Living and Dying in the Contemporary World: A Compendium 9780520961067

Table of contents :
Contents
Acknowledgments
Introduction: A Concept Note
Section 1. Natality, Sexuality, Reproduction
1. Maternal Mortality, Technological Innovations, and Therapeutic Strategies
2. Conceiving Life and Death: Stem Cell Technologies and Assisted Conception in India and the Middle East
3. The Pregnant Hijra: Laughter, Dead Babies, and Invaluable Love
4. New Lives for Children: Adoption Documents and the Law in Central Mexico
5. Transnational Adoption and (Im)possible Lives
6. “Forced Pregnancy,” Humanitarian Access to Reproductive Rights, and Locating “Life” within the Powers of “Death”
7. Bleeding Dreams: Miscarriage and the Bindings of the Unborn in the Palestinian Refugee Community of Tyre, South Lebanon
Section 2. Medical, Legal, and Pharmaceutical Spaces
8. Waiting and the Architecture of Care
9. The Social Phenomenology of the Next Epidemic: Pain and the Politics of Relief in Botswana’s Cancer Ward
10. Living and Dying in Mental Health: Guns, Race, and the History of Schizophrenic Violence
11. The Wealth of Populations: Poverty and HIV/AIDS in Rural Central China
12. Living and Dying with Mycobacteria: Tuberculosis and the Regulation of Anti-tuberculous Drugs in Nepal
13. The Juridical Hospital
14. The Right of Recovery
15. Just Living: Law, Life, Livelihood, and Sexual Assault
16. “If You Remember, You Can’t Live”: Trauma, Insecurity, and the F/utility of “PTSD” in Haiti
17. Death as a Resource for Life
Section 3. Healing: Religious and Secular Bodies
18. Thinking about the Secular Body, Pain, and Liberal Politics
19. Nonself Help: How Immunology Might Reframe the Enlightenment
20. Secular Histories, Saintly Returns: Death and Devotion in Modern Turkey
21. The Good and the Bad Breast: Cosmetic Surgery and Breast Cancer
22. Attachments of Life: Intimacy, Genital Injury, and the Flesh of the U.S. Soldier Body
23. Key Acts: Organ Transplantation and Subjectivities in the Public Sphere
24. Life, Death, and Reverie: Method in a Congolese Medical History
Section 4. Precarious Lives
25. Life and Concept
26. Never Quite Given: Calling into Question the Relation between Person and World in Postinvasion Iraq
27. Mourning, Grief, and the Loss of Politics in Palestine: The Unvoiced Effects of Military Occupation in the West Bank
28. Echoes of a Death: Violence, Endurance, and the Experiences of Loss
29. Walking Through: Movement, Schizophrenia, and the Vicissitudes of Presence
30. “Not Dead Yet”: Changing Disability Imaginaries in the Twenty-First Century
31. Suffering from Evidence: Expertise, Racial Health Disparities, and the Case of Jerry
32. “God Isn’t Finished with This City Yet”: Disputing Katrina-Related Deaths in Postdisaster New Orleans
33. Hunger and Thirst: Crises at Varying Thresholds of Life
34. “Tibet on Fire”: Self-Immolation, Affect, and the Global “N of 1”
Section 5. Death and Dying
35. After Life
36. A Good Death, Recorded
37. Lonely Death: Possibilities for a Not-Yet Sociality
38. Chemonotes
39. The Experience of Death in a Dutch Nursing Home: On Touching the Other
40. Life beside Itself
41. Traces of Destruction and the Thread of Continuity in Postgenocide Cambodia
42. Corpus Vile: Death and Expendable Youth in Urban Congo
43. The Value of Life and the Worth of Lives
44. The Evolution of Mortality Rates by Sex: The Experiences of the Rich and the Uncertainties of the Not-So-Rich
Contributors
Index

Citation preview

LIVING AND DYING IN THE CONTEMPORARY WORLD

the publisher gratefully acknowledges the generous support of the general endowment fund of the university of california press foundation.

LIVING AND DYING IN THE CONTEMPORARY WORLD A Compendium Veena Das and Clara Han, editors

UNIVERSITY OF CALIFORNIA PRESS

University of California Press, one of the most distinguished university presses in the United States, enriches lives around the world by advancing scholarship in the humanities, social sciences, and natural sciences. Its activities are supported by the UC Press Foundation and by philanthropic contributions from individuals and institutions. For more information, visit www.ucpress.edu. University of California Press Oakland, California © 2016 by The Regents of the University of California Library of Congress Cataloging-in-Publication Data Living and dying in the contemporary world : a compendium / Veena Das and Clara Han, editors. pages cm Includes bibliographical references and index. isbn 978-0-520-27841-7 (cloth : alk. paper) — isbn 978-0-520-96106-7 (ebook) 1. Social history—21st century. 2. Life—Cross-cultural studies. 3. Death—Cross-cultural studies. I. Das, Veena, editor. II. Han, Clara, 1975– editor. hn18.3.l59 2016 306—dc23 2015022484 Manufactured in the United States of America 25 24 23 22 21 20 19 18 10 9 8 7 6 5 4 3 2 1

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The paper used in this publication meets the minimum requirements of ansi/niso z39.48-1992 (r 2002) (Permanence of Paper).

For Harry Marks

CONTENTS

Acknowledgments

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Introduction: A Concept Note

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1

Clara Han and Veena Das SECTION 1. NATALITY, SEXUALITY, REPRODUCTION

1.

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39

Maternal Mortality, Technological Innovations, and Therapeutic Strategies 47 •

Stanford–ISERDD Study Collective

2.

Conceiving Life and Death: Stem Cell Technologies and Assisted Conception in India and the Middle East 67 •

Aditya Bharadwaj and Marcia C. Inhorn

3.

The Pregnant Hijra: Laughter, Dead Babies, and Invaluable Love 83 •

Vaibhav Saria

4.

New Lives for Children: Adoption Documents and the Law in Central Mexico 100 •

Anaid Citlalli Reyes Kipp

5.

Transnational Adoption and (Im)possible Lives

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114

Eleana Kim

6.

“Forced Pregnancy,” Humanitarian Access to Reproductive Rights, and Locating “Life” within the Powers of “Death”

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130

Nayanika Mookherjee

7.

Bleeding Dreams: Miscarriage and the Bindings of the Unborn in the Palestinian Refugee Community of Tyre, South Lebanon 143 •

Sylvain Perdigon SECTION 2. MEDICAL, LEGAL, AND PHARMACEUTICAL SPACES

8.

Waiting and the Architecture of Care

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159

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167

Sophie Day

9.

The Social Phenomenology of the Next Epidemic: Pain and the Politics of Relief in Botswana’s Cancer Ward 185 •

Julie Livingston

10.

Living and Dying in Mental Health: Guns, Race, and the History of Schizophrenic Violence 205 •

Jonathan M. Metzl

11.

The Wealth of Populations: Poverty and HIV/AIDS in Rural Central China 217 •

Shao Jing

12.

Living and Dying with Mycobacteria: Tuberculosis and the Regulation of Anti-tuberculous Drugs in Nepal 232 •

Ian Harper and Nabin Rawal

13.

The Juridical Hospital

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251

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270

João Biehl

14.

The Right of Recovery Adriana Petryna

15.

Just Living: Law, Life, Livelihood, and Sexual Assault

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289

Sameena Mulla

16.

“If You Remember, You Can’t Live”: Trauma, Insecurity, and the F/utility of “PTSD” in Haiti 301 •

Erica Caple James

17.

Death as a Resource for Life Angela Garcia

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316

SECTION 3. HEALING: RELIGIOUS AND SECULAR BODIES

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329

Thinking about the Secular Body, Pain, and Liberal Politics

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337

Talal Asad

19.

Nonself Help: How Immunology Might Reframe the Enlightenment 354 •

A. David Napier

20.

Secular Histories, Saintly Returns: Death and Devotion in Modern Turkey 367 •

Christopher Dole

21.

The Good and the Bad Breast: Cosmetic Surgery and Breast Cancer 382 •

Bernadette Wegenstein

22.

Attachments of Life: Intimacy, Genital Injury, and the Flesh of the U.S. Soldier Body 399 •

Zoë H. Wool

23.

Key Acts: Organ Transplantation and Subjectivities in the Public Sphere 418 •

Aslıhan Sanal

24.

Life, Death, and Reverie: Method in a Congolese Medical History 431 •

Nancy Rose Hunt SECTION 4. PRECARIOUS LIVES

25.

Life and Concept

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441

449

Michael D. Jackson

26.

Never Quite Given: Calling into Question the Relation between Person and World in Postinvastion Iraq 463 •

Hayder Al-Mohammad

27.

Mourning, Grief, and the Loss of Politics in Palestine: The Unvoiced Effects of Military Occupation in the West Bank 475 •

Lotte Buch Segal

28.

Echoes of a Death: Violence, Endurance, and the Experiences of Loss 493 •

Clara Han

29.

Walking Through: Movement, Schizophrenia, and the Vicissitudes of Presence 510 •

Sarah Pinto

30.

“Not Dead Yet”: Changing Disability Imaginaries in the Twenty-First Century 525 •

Faye Ginsburg and Rayna Rapp

31.

Suffering from Evidence: Expertise, Racial Health Disparities, and the Case of Jerry 542 •

Carolyn Moxley Rouse

32.

“God Isn’t Finished with This City Yet”: Disputing Katrina-Related Deaths in Postdisaster New Orleans 559 •

Anne M. Lovell

33.

Hunger and Thirst: Crises at Varying Thresholds of Life

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576

Bhrigupati Singh

34.

“Tibet on Fire”: Self-Immolation, Affect, and the Global “N of 1” 599 •

Vincanne Adams SECTION 5: DEATH AND DYING

35.

After Life

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629

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Michael Lambek

36.

A Good Death, Recorded

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648

Robert Desjarlais

37.

Lonely Death: Possibilities for a Not-Yet Sociality

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662

Anne Allison

38.

Chemonotes

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675

Harry M. Marks

39.

The Experience of Death in a Dutch Nursing Home: On Touching the Other 696 •

Roma Chatterji

40.

Life beside Itself

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712

Lisa Stevenson

41.

Traces of Destruction and the Thread of Continuity in Postgenocide Cambodia 729 •

Anne Yvonne Guillou

42.

Corpus Vile: Death and Expendable Youth in Urban Congo

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Filip De Boeck

43.

The Value of Life and the Worth of Lives

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770

Didier Fassin

44.

The Evolution of Mortality Rates by Sex: The Experiences of the Rich and the Uncertainties of the Not-So-Rich 784 •

Rabia Ali and Jishnu Das

Contributors Index 829 •

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ACKNOWLEDGMENTS

There have been many friends and colleagues who have helped bring this project to fruition. We are grateful to Reed Malcolm, who, on behalf of the University of California Press, invited us to edit a medical anthropology handbook suitable for upperlevel undergraduates and graduate students. He allowed this book to take unconventional paths as it took on a life of its own. We are so very grateful for his openness to the project. Our contributors cannot be thanked enough for the richness of their engagement. We thank the following authors and holders of copyright for permission to reproduce previously published pieces in revised form: Talal Asad, “Thinking about the Secular Body, Pain, and Liberal Politics,” Cultural Anthropology 26 (4): 657–75, November 2011; Harry Marks, “Chemonotes,” Social History of Medicine 25 (2): 520–39, 2012; David Napier, “Nonself Help: How Immunology Might Help Reframe the Enlightenment,” Cultural Anthropology 27 (1): 122–37, February 2012; Adriana Petryna, “The Right of Recovery,” Current Anthropology (based on the Wenner-Gren Symposium, The Anthropology of Potentiality), 2013, 54(S7): S67–S76; Lisa Stevenson, chapter 5 of Life Beside Itself: Imagining Care in the Canadian Artic (Berkeley: University of California Press, 2014). Raqs Media Collective created a beautiful new artwork to be placed on this book’s front cover, a work that can be taken as a chapter in its own right. Thank you, Raqs, for your generous and brilliant participation in this project. We would also like to express our gratitude to our colleagues in the Department of Anthropology, our colleagues in the Critical Global Health Seminar, and especially to our

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graduate students at Johns Hopkins University, whose conversations in seminars, over coffee, and on Skype have contributed so much to our thoughts here. Our enormous thanks to Amy Krauss, Andrew Brandel, Grégoire Hervouet-Zeiber, and Mariam Banahi, who helped this volume come together for submission. And we thank Maarten Ottens, who graciously made time to give assistance with the illustrations and designed the front cover. This book is dedicated to our late colleague and friend Harry Marks, whose curiosity, generosity, and wondrous depth of knowledge continually inspire us.

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INTRODUCTION A Concept Note

Clara Han and Veena Das

Dōgen, a thirteenth-century Buddhist scholar from Japan, provocatively reversed the commonsense notion of life and death, which takes birth as the inception of a linear stretch of time over which a particular life is lived and death as the moment of cessation of that time. Instead, he thought that within Buddhist practice and hence within each moment, life and death can be seen as working together. What if we took such ways of conceptualizing the relation between life and death as present not only in exotic practices but also in concepts generated from the experiences of everyday life and its perils? Then we could become attentive to the multiple forms in which human societies generate understanding of life that comes from their varied experiences of how living and dying have been transformed in our contemporary conditions. This book is conceived as a response to the idea that our concepts are honed from the everyday experiences to which the people we study struggle to give expression, and to the idea that we ourselves become apprentices to death as we survey the altered landscape on which life and death become conjoined in our contemporary world. Our intention in this introductory chapter is not to summarize the chapters that follow: the section introductions show how the particular chapters in each section take forward the ways in which life and death are folded together in the lives of individuals and communities. Here we want to reflect on how anthropological conceptions of life have absorbed the discussion of these issues from philosophy and from the history of medicine even as the anthropological attention to the concreteness of lives and deaths has put pressure on the abstract formulations of these other disciplines. We do not intend to treat philosophy as anthropology’s theory any more than

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we claim to provide empirical evidence for the abstract theorization of philosophers: rather, we hope to trace the multiple paths that we want to keep open for anthropological explorations in the investigation of life and how it is conjoined to death in specific, concrete ways. Recent attempts in the anthropology of medicine (or medical anthropology), as well as science and technology studies, have made impressive gains in understanding how the emergence of the biopolitical state, neoliberal restructuring of markets, globalization, and advances in biology have shifted the emphasis from society as an object of study and reform to life as an object of study and reform. Yet, narrowing down the notion of life to biological life alone has drawn a boundary between more classical questions about life, including those from within an anthropology of religion on the impulse to regeneration within the rituals of death and of sacrifice (see Bloch and Parry 1982; Puett 2004) and the so-called new questions that assume that unless the prefix bio- can be added to a concept, that concept becomes irrelevant to our contemporary conditions. Might we reposition anthropology to ask such questions as: What description would be adequate to our sense of life and even reality as precarious or fragile? What is it for a human being to be awakened to his or her existence? What is it for humans to have a life in language? What is the relation between cultural differences expressed in notions of context, milieu, and disposition that bind us to our culture and the impulse toward criticism, skepticism, or denial of the connections that might create positive energies toward reform or secrete destructive impulses that drain life out of our relations, making them ghostly or spectral? How do attachment and detachment, trust and skepticism, between those who are close or distant, or between the human and the inhuman, play out at different thresholds of life? Do the critique of humanitarianism and the taken-for-granted assumptions about the human that privilege sentimental connections exhaust the possibilities of the anthropological impulse to respond to suffering? How can we rethink notions of the ideal, the normal, and the pathological? It is not our claim that such questions are completely absent from the recent magisterial anthologies in medical anthropology. Yet we may ask how the very impulse to put these texts within the subdiscipline of medical anthropology or of science and technology studies tends to create the idea of these subdisciplines as fully constituted domains of inquiry, which then try to establish relations with other such subdisciplines as anthropology of religion and linguistic anthropology (e.g., Briggs 2004). We are curious as to how the notion of life and what is asked in relation to living and dying may be subtly shaped by assuming these boundaries. Why are “ethics” and “politics” marked out as domains separate from each other and from everyday life, for instance? What if these boundaries were not there in the first place?1 Is the impulse to carve a different domain for medical anthropology also a way of acknowledging the dominance of public health and medicine? The rest of this introduction is organized as follows: We first take issue with recent work that has privileged the power of biology to generate “newness” in contemporary social life. The mystery, we suggest, is how newness comes to be embedded in older

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forms even as it transforms them. Instead of seeking to find what is common to all in the form of a general theory of biopower, we take three complexes—biosecurity and biopolitics in relation to the colonial order; the varied ways in which identity and existence are tied to each other in the politics of recognition around biological conditions; and the sites of scientific knowledge production in relation to the search for cure—to examine both the ways in which newness is embedded in older forms of politics and sociality, and the varied ways in which the biological and social come to be inflected in each other. We reflect on the ways in which the demand for recognition may surpass the framework of rights liberalism relied on in recent work on biological citizenship and biosociality. Second, we ask how attention to the singular living being might shift our understanding of this mutual absorption of the natural and social. If norms are part of the way in which the body is experienced, in what way might newness be born in the world? While the concept of local biologies has contributed much to unsettling any universal idea of biology, we suggest that the particular way in which it deploys the idea of contextualization tends to emphasize the production of regularities. We turn to philosopher and historian of science Georges Canguilhem to suggest that his thoughts on individuality as that which is precariously achieved through enormous effort may be helpful in seeing context in an entirely different light. Canguilhem asks us to pay attention to the relation of living being and milieu—neither of which is held constant. Yet we also suggest that Canguilhem’s commitment to retrieving the vital from mechanism may lead him to take the human as a rather stable entity, clearly differentiated from other organisms through the customs, social organization, and technologies that only “man” partakes in. How might we attend to the fragility of life, in the sense of a human form of life? We respond to this question in the third section by giving sustained attention to the nuances of the expression “form of life,” which Wittgenstein introduced as an ordinary expression and not as a conceptual schema. The expression “form of life” helps us see language not as linguistic philosophy does—as about language—but rather as human beings’ life in language. Cavell’s (1989) analysis of the two separate dimensions of the expressions form and life and Das’s (2007) elaboration of the idea of naturalness in terms of the acts and expressions that belong to our lives as humans—rather than, say, to what is natural for birds or animals—help us see the two aspects of the expression form of life as nestled in each other: sociocultural differences, or the form that human existence takes, as well as the way in which the social and the natural mutually absorb each other. We come to see that a form of life rests on nothing more but nothing less than that we agree or find ourselves agreeing to a life together. As such, agreement in a form of life is not a matter settled once and for all but must be secured through the work on the everyday. The fragility that marks our agreements reveals not just how our experience is opaque to us but also the precarious nature of reality. Thus the ideas of limit and of thresholds are integral to the ways in which life is reconstituted. The notion of limit then becomes the point at which the natural and the social come apart. Shifting our attention to varying

INTRODUCTION

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intensities and the waxing and waning of force through which life is reconstituted, on the other hand, offers a possibility that something new might emerge to sustain life (Singh 2014). We thus suggest, as the chapters in this book beautifully demonstrate, that embracing an idea of life and death that goes beyond the notions of the biological (even while including it) may help anthropology be genuinely open to pathways for reimagining human life as the mutual absorption of the natural and the social and the fragility with which they come to be aligned.

THE TRAFFIC BETWEEN BIOPOWER AND LIFE

In a series of essays, Didier Fassin (2009; 2014) proposed the term politics of life in order to highlight the elusiveness of life in Michel Foucault’s work on biopolitics and to draw attention to what politics concretely does to life in terms of the simultaneous assertion of the sacredness of life as an abstract concept and the differential valuation of concrete lives in the actual institutional practices of modernity. Through an acute analysis, Fassin takes issue with a widely held view that Foucault’s concept of biopower and his subsequent work on biopolitics take as their object “life itself.” As is well known, Foucault elaborated biopolitics through a detailed description of how population emerged as a biological reality independent of individual lives through the application of statistical reasoning in eighteenth- and nineteenth-century France (Foucault [1975–76] 2003; [1977–78] 2007). As a technology of power distinct from mechanisms of discipline, which sought the individual’s conformity to the norm, biopolitics was the “control of life and the biological processes of man-as-species and of ensuring that they are not disciplined, but regularized”—a regulation made possible through “statistics, forecasts, and overall measures” (Foucault [1975–76] 2003). Foucault’s analysis of the regulation of the population, or the efforts to intervene in the vital characteristics of “man-as-species,” spurred a whole gamut of terms in anthropology that took bio- as a qualifier: biosociality, biological citizenship, biocapital, and bioavailability, to name a few. Yet, as Fassin points out, those working within the tradition of Foucault have tended to take the notion of life as that which is defined by biological knowledge alone. We may here note a curious divide in anthropology between an impulse to see life as an object of intervention and a biological reality that is regularized through deliberate actions grounded in biological knowledge and statistics on the one hand, and an impulse to see life as a complex entanglement of norms, customs, and practices that escape this regularization on the other. While we are in agreement with the idea that the social is not the ground of all being, as well as with the need to question the givenness of biology as that which underwrites societal variation, the questions that arise from the dual notion that life needs forms but that forms are not pure human constructions are so difficult that most discussions fall into the known divisions between the given and constructed or the conventional and the natural. Even such issues as those of finding adequate ways of describing the entanglement of the natural and the social need more

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elaboration: Wittgenstein asks us to look and see, and not to just think, what is common between, say, two kinds of games, and he tells us that what we find is not something common to all games but, rather, relationships, overlaps, and series—what he also called family resemblances (Wittgenstein 1953, paras. 66, 67). We shall take precisely such an idea forward in our understanding of the modifier bio- not by examining what is common to all forms of biologically mediated life but by looking at three such constellations of the biological with the social. Scholars in science and technology studies and in the anthropology of biomedicine acknowledge that human life entails the mutual inflection of the biological and the social, and that neither is reducible to the other. However, there is a tendency to privilege developments in the biological sciences and informatics as generating “newness” in contemporary social life, thereby introducing a kind of evolutionary thinking through which it is assumed that biology is the new motor of history and that its power to reshape life will be replicated in time in all societies, too.2 According a privileged place to biology in the form of synthetic biology (Rabinow 2011) or neurosciences (Ramachandran 2012; Varela 1999) as the site of “the new” tends to overlook connections to older forms of socialities and their power to redefine the shape that biology will itself take. The presumption of a “we,” while clearly constructed in a particular site (usually Europe or North America), is often generalized to all sites of the world, assuming a linear development that will replicate the existing structures in the West. In some ways such a formulation re-creates all the assumptions of modernization theory on convergence that were the subject of stringent critiques in the late twentieth century.3 In what follows, we take three complexes with which to look at the mutual imbrications of the biological and the social: biosecurity and biolegitimacy in relation to colonial orders and the securing of European identity; the politics of recognition in relation to biological conditions; and the sites of scientific knowledge production in relation to the search for cure. Our discussion here is not so much a wholesale rejection of science and technology studies as it is the voicing of a caution: neither do developments in biological sciences make older forms of politics redundant, nor is it easy to locate newness as if it were a complete rupture from the past. Rather, as the ancients formulated the mystery of time: How can something that exists bring about something that is other than itself, as newness? Or, put differently, What is the relation between situation and event? In his lectures “Security, Territory, Population,” Michel Foucault elaborates how the mechanism of security emerges in concert with the idea of the population in eighteenthcentury Europe. The population, which he calls a “thick natural phenomenon,” allows for the transition from classificatory identifications of natural history to the regularities, mutations, and eliminations of biology (Foucault [1975–76] 2003, 63–64). But what does the “naturalness” of the population signify? Foucault argues that this naturalness rests on the regularities that can be discerned even in accidents, the universal of desire— understood as the pursuit of the individual’s interest—which “regularly produces the benefit of all,” and a number of modifiable variables on which this desire depends (74).

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Technologies of security seek to transform those regularities into those considered more “favorable”—what Foucault calls “normalization.” Consider variolation for smallpox. Through artificially inoculated disease, future cases can be prevented, thus allowing for “the progressive self-cancellation of phenomena by the phenomena themselves” (66). Government of the population, then, involves the deployment of “reflected procedures”— calculations of risk and identifications of dangers, but also the fears, prejudices, and opinions of a public, which can be got hold of through campaigns and education. Yet we may ask: How are these internal dangers discerned? Does normalization necessarily follow such discernment, and if so, in relation to whom, and in what registers of social life? Do technologies of security necessarily entail deliberate action on the basis of categories that are settled in advance? In her classic work on race, sexuality, and empire, Anne Stoler both extends and shows the limits of Foucault’s concept of biopower, in that it was constructed primarily with regard to a history of European sexuality and to state racism within the boundaries of a Europe largely extricated from its embeddedness in empire (Stoler 1995). Of particular interest to us is her finely tuned discussion of how internal dangers to European society came to be constituted through the entanglement with colonial settlement. Instead of relying on a picture of colonialism as simply the exportation of secure ideas of European supremacy and the bourgeois self, Stoler demonstrates how a pervasive anxiety over the security of the European population was expressed not only in relation to a clearly demarcated other, but perhaps more so in relation to mixedblood children and destitute white colonial settlers who would be legally identified as European but threatening to European identity as such. That is, European identity came to be forged through threats that were dubiously internal. Stoler argues that in colonial orders, “the concept of a ‘population’ did not substitute for a ‘people’: both conceptions represent state-building and nation-building projects in which a racial grammar tying certain physical attributes to specific hidden dispositions played a crucial role” (1995, 39). Thus, extending Foucault’s concern not “with modern racism’s break with earlier forms, but the discursive bricolage whereby an older discourse of race is ‘recovered, modified, encased and encrusted’ in new form” (Stoler 1995, 61), Stoler examines the ways in which vulnerabilities of the bourgeois colonial project were given expression and shored up, particularly in the domain of sexuality and the domestic: “management and knowledge of home environments, childrearing practices, and sexual arrangements of European colonials were based on the notion that the domestic domain harbored potential threats both to the ‘defense of society’ and to the future ‘security’ of the [European] population and the [colonial] state” (96). The harried efforts in discerning these vulnerabilities demonstrate the instability and flux of who or what was to be defended: defense was forged through responses to anxieties over securing whiteness and bourgeois respectability, yet their nature, too, was being forged. These anxieties found a potent locus in the presumed vulnerability of children’s sexuality, which could be deformed

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through subjection to “tropical circumstances and/or to those of native or impure blood” (156). Bringing into focus the nervousness with which colonial regimes attempted to discern mobile internal dangers and to purify them from the social body shows us the way in which projects to secure the health of the population are embedded in older racial discourses of blood and forms of sociality on which colonial rule rested, such as slavery and forms of domestic servitude. And further, it illuminates how technologies of security are mediated by anxieties surrounding these older formations and discourses, such that the “naturalness” of the population is penetrated not just by agents and techniques at once “enlightened, reflected, analytical, calculated, and calculating” but also by agents and techniques permeated by senses of threat and powerlessness (Foucault [1975–76] 2003, 71). In her ethnohistorical study of the colonial Congo, Nancy Rose Hunt makes the perceptive remark that such nervousness, frailty, and vulnerability can be understood as one of the two faces or “moods” of the colonial state: the biopolitical state focused on medicine, demography, and public health; and the security state “focused on security, crime, and fearful healing movements, . . . one more guilty and humanitarian, the other nervous and energized by dread” (Hunt 2013, 22). Paying attention to these two interdependent moods may illuminate how biolegitimacy—or the power of life in terms of an abstract sacredness of life that may be understood as undergirding current humanitarian impulses in government (see Fassin 2009)—is simultaneously asserted with the concrete valuation of lives, both of which are embedded in a meshwork of contradictory impulses regarding the legitimacy of a state’s rule and what the state would do to ensure its existence, the security of the [European] population, and their intersections with forms of life.4 As David Arnold has demonstrated in his study of cholera epidemics in nineteenthcentury India, while there were massive deaths among the rural poor from cholera, it was perceived primarily as a military and political threat by a colonial regime heavily dependent on European soldiers (Arnold 1993). As a disease that was unresponsive to the favored therapies at the time, either Western or Indian, cholera not only revealed the physical frailty of colonial rule but also emphasized its political vulnerability. This vulnerability manifested itself in the colonial government’s preoccupation with practices of disease propitiation and expulsion in villages, anxiously viewed as a possible political threat and in need of policing. It also was revealed, however, in the colonial government’s “determinedly anticontagionist” stance vis-à-vis the 1866 International Sanitary Conference, on cholera, which—like the preceding International Sanitary Conferences that sought to secure Europe against the threat of cholera and other diseases they viewed in terms of racialized scourges (see Bynum 1993)—“declared pilgrimages in India to be ‘the most powerful of all the causes which conduce to the development and to the propagation of epidemics of cholera’ ”(Arnold 1993, 187). This commitment to an anticontagionist stance was not simply a product of colonial medical experts out of touch with cutting-edge

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European medicine; rather, it arose both from the reluctance to foot the bill for medical provision for the rural poor and from fear that interference with pilgrimages would threaten the legitimacy of colonial rule by infringing on its promise of “religious tolerance.” Thus the colonial government pursued what Arnold calls a “noninterventionist laissez-faire policy toward cholera” that took cholera not as an urgent issue but as a longestablished disease, to be handled in the form of piecemeal intervention and rather complacently, except with regard to specific bodies (195). Even as the cholera vaccine became an available technology of prevention, its use was primarily confined to soldiers, prisoners, and tea-estate workers: those who secured the territory and the existence of the colonial state militarily and commercially, or those who were incarcerated in a site of medical observation and control that was deemed accessible to colonial power and knowledge (see also Misra 2000). Here we see that what is at stake for the colonial government is not only the securing of the biological existence of the European population but also the life of a political entity—stakes that can come into contradiction (see Asad 2013). The abstract nature of biolegitimacy finds its concrete specificity in such contradictions. We have suggested throughout this discussion that, rather than consider the qualifier of bio- as that which allows for a clean break from older forms of sociality and of politics, as some recent work on security threats and bioterrorism would suggest (see Lakoff and Collier 2008), we can query the ways in which biosecurity, biopolitics, and biolegitimacy are embedded in these older forms and may be transformed by them or transforming of them. Further, an attunement to the senses of vulnerability and fragility suffusing the state can illuminate the contradictory ways in which projects of biosecurity and biopolitics are tied together.5 Keeping in view the ways in which newness is embedded in older forms complicates an evolutionary or linearly accretive view of citizenship that scholarship that privileges the power of biology to generate newness in social life tends to rely on. Nikolas Rose, for instance, finds it “useful” to “think of a kind of evolution of citizenship since the eighteenth century in Europe, North America, and Australia: the civil rights granted in the eighteenth century necessitated the extension of political citizenship in the nineteenth century and of social citizenship in the twentieth century” as the starting point for his discussion of biological citizenship (Rose and Novas 2005, 440). In this view, citizenship projects move along an evolutionary line from the rights of man, which finds their origins in natural law, to the emergence of the liberal state, which guarantees the rights of those bound to a nation-state through law that humans themselves author. This national citizenship, Rose argues, is today challenged by citizenship claims on the basis of “bare life” in the form of human rights claims and by what he calls “biological citizenship”: claims to citizenship on the basis of biological knowledge in the form of genomics. Rose posits that this citizenship is both individual and collectivizing. Individuals come to have a relationship to themselves in terms of their biology—the knowledge of risks of disease and capacity for health inscribed in their genomes. And this knowledge gives rise to “new forms of ‘biosociality’ ” in which collectivities are created around “a biological conception of shared identity” (442).

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In their discussion of “biopower today,” Rabinow and Rose further elaborate this model of citizenship based on the new genomics. They contend that after World War II, a biological understanding of race was “no longer ‘in the true’ in political or policy discourse” and that race, though a socioeconomic category, was largely unhooked from a biological understanding (Rabinow and Rose 2006, 206). However, with genomics a new molecular deployment of race emerges that has opened up new ways of conceptualizing population differences in terms of geography and ancestry and has spurred on the creation of patient groups who demand “genomic self-knowledge” (207). Biopower today does not involve the “wholesale management of populations”; instead, Rabinow and Rose insist, the form that biopolitics takes has to do with “attempts to develop and maximize targets for pharmaceutical markets and other health-care interventions which entail enrolling individuals, patient groups, doctors, and political actors in campaigns of disease awareness and treatment in the name of the maximization of the quality of life” (211). Thus, a defining characteristic of biological citizenship is that of “active” citizenship, in which the citizen is made up through his or her “self-care” and participates in biosocial groupings that engage in forms of medical and patient activism, largely geared toward gaining access to services and combating stigma (Rose 2007). What is striking in this discussion, however, is that the issues surrounding identity and the demand for recognition are largely absorbed within a liberal framework that is implicitly taken as universal and all-encompassing. Our claim is that these elaborations of biological citizenship and biosociality tend to sidestep the knotting together of identity and existence in the politics of recognition around biological conditions. We emphasize that the point here is not to simply assume a commonality among various conditions or to meld diverse stakes in biological conditions into a general theory of biological citizenship, but rather to look at the ways in which identity and existence are tied to each other. Existence, we suggest, can involve both biological existence and one’s place or one’s way of being in the world. The notion of life encompasses both biological life and one’s life as a social being, just as death is not only about biological death but also about the disappearing of a whole way of being so that the individual can find no recognition of his or her collective existence in the world. Looking and seeing may reveal the varied ways in which the biological and social are knitted into each other in the demand for recognition, and may also demonstrate, as philosopher Charles Taylor delicately suggests, that the demand for recognition may surpass a framework of rights liberalism (Taylor 1994); for it may involve issues of the survival of culture, or of one’s way of life, which is connected to the acknowledgement of worth. Let us take three cases—Deaf activism, the neurodiversity movement, and AIDS activism—to give further substance to this thought.6 In a beautiful essay on being and reality, Ghassan Hage describes his gradual loss of hearing and then its recuperation with a cochlear implant (Hage 2014). The loss of hearing implicated not just a changed biological status, but indeed a loss of “part of my being.” As Hage relates, since he was a child he was inclined toward eavesdropping—a

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habit that became a durable mode of being and situated him as a listener within a “different hearing reality” (149). He remarks, “Indeed, when I lost my capacity to eavesdrop [due to his deafness] it wasn’t a ‘point of view’ on or a representation of reality that I lost but a whole reality that I had been inhabiting and that was no longer available for me to inhabit” (150). Yet after Hage received a cochlear implant, he began to “yearn every now and then for the world of deafness, which was not as dominated by symbolic or symbolizable dimensions. . . . It is not a world without words, but rather even words themselves, as they lose this sharp differentiation, start conveying less symbolic meaning and more an emotional charge” (154). What Hage brilliantly renders here is how deafness—a biological condition—becomes a part of one’s being, one’s disposition. We can expand these thoughts to the contentious debates over cochlear implant technology within the Deaf community and between Deaf activists, hearing parents, and medical professionals. Whereas medical professionals and hearing parents have applauded cochlear implant technology as an alternative to deafness, Deaf activists have argued that the cochlear implant casts deafness as a disability, and moreover is a denial of Deaf culture (see Blume 1997; Blume 2010; Brusky 1995). This denial, they argue, is acutely threatening because it not only denies the recognition of actually existing members of Deaf culture but, even more, presents a threat to the survival of Deaf culture by making hearing children out of deaf children. Cochlear implant technology, however, has also provoked heated debates within the Deaf community, particularly between late-deafened adults and those born deaf, indicating that the ties between identity and existence vary not only in relation to a biological condition, but in how that biological condition emerges in a life. This heterogeneity of experience shaped Deaf activism’s public criticism of this technology. Stuart Blume remarks that the British Deaf Association (BDA) made a public position of “non-support” only after heated internal debate. Yet the language deployed in their demonstration of nonsupport is illuminating: “The drive to ‘normalise’ Deaf people, by increasing the quantity of sound which can be sensed, carries with it the danger of alienating the Deaf person from their own self-identity, and from their own natural community and its living language, without allowing full integration and access to hearing society” (BDA 1994, 25–26, quoted in Blume 1997, 49; emphasis ours). Note here how deafness is expressed in terms of a “natural community” with a “living language.” This “living language” involves sign language, but the stakes here are not just to make accessible different options to learn (about) sign language. The idea of a natural community with a living language points to the way in which we inhabit our life in language. Whereas those who are blind would not consider themselves as inhabiting a “blind culture,” or at least have not done so, those with deafness identify with a culture in which a notion of the good life arises.7 As a Deaf activist remarks, “In the broadest sense, a human being, hearing or deaf, is better off having rich, meaningful and satisfying dialogues with only 100 individuals than to have superficial, parrot like, and stifled dialogues with 10 million individuals” (quoted in Brusky 1995, 255). Rich, meaningful, and satisfying dialogues

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contrast with a “parrot like” repetition of sounds that would render language lifeless. At stake is the inhabitation of the world in a human way, at least in this corner of the human. Thus, the threat of cochlear implant technology is perceived in its capacity to extinguish a collective way of being—ways of feeling, of attuning, of sharing, and of selfunderstanding that give one a future in one’s culture. It may be for this reason that the deaf child is at the center of this heated debate. As the bearer of the future of culture, the child learns language not simply as an individual accomplishment but also as the one who holds the promise that the potential inherent in language will not disappear. Deaf activists see cochlear implant technology as extinguishing this possibility that, although born through a biological condition, allows a culture to survive. We can locate overlapping concerns with the activists of the neurodiversity movement, particularly around the controversial therapy called Applied Behavior Analysis—a cognitive behavioral therapy that has been applied to ever-younger children with autism in order to assist these children in establishing and maintaining visual contact and performing limited cognitive tasks (Ortega 2009). For some autistic self-advocates, this therapy suppresses the autistic way of being and casts autism as a disease to be normalized rather than a different way of being that should be celebrated. As scholars have pointed out, the formation of an autistic culture can be understood as inspired by Deaf culture, and self-advocates draw parallels between the Internet as a technology that has done “what was thought impossible, to bind autistics together into groups,” as sign language did for Deaf culture (see Grinker 2008; Singer 1999, quoted in Ortega 2009, 432). It is interesting in this context to turn to the terms with which individuals with autism draw on Deaf culture. As one autism self-advocate remarks, “The computer is kind of like what sign language is for the Deaf. It’s the autistic way of communicating” (quoted in Bagatell 2010, 37; emphasis ours). Here we see the computer emerge as a technology that allows for communication by virtue of its being a “buffer” or “mediator” (Bagatell 2010, 37). The emphasis on communication may reveal more about the stakes in achieving sociality in diverse ways. Against a picture of autism as a disease that disallows sociality in terms of emotional attachment and the capacity for interaction, self-advocates in the neurodiversity movement seek to amplify and extend the assumed boundaries of human sociality. Forms of autistic sociality, self-advocates argue, emerge from ways of being that are integral to who they are: “[I]t colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence (Sinclair 1993, quoted in Ortega 2009, 433). An autistic way of being is therefore not in need of cure or prevention, but rather in need of social and technological supports that would allow for a mode of communication that comes naturally. In this sense, autism is seen as contingently disabling, and thus a “socially constructed” disability that derives from neurological difference (Bagatell 2010, 38). Those with low-functioning autism and their caregivers, however, argue that medical intervention may be the only way to live with what they experience as disease. They argue that in the neurodiversity movement’s celebration of neurological difference, self-advocates—who are primarily

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“high-functioning”—tend to uphold an idea of independence that those parents of children with low-functioning autism or those with low-functioning autism themselves find discordant with the enormous efforts that go into care and into living. Underlying the tensions over whether one has autism or is autistic—that is, how one identifies with this biological condition—may be the delicate question of how dependency is admitted into social and political life. Is the disability lived by low-functioning autistics a social construction that can be addressed through social supports to allow for “independent” living, or is there a genuine dependency that calls for acknowledgment not only for the person with autism, but for his or her caregivers? Is lifelong dependency compatible with a liberal conception of citizenship? The feminist philosopher Eva Feder Kittay points out the difficulties that have arisen for severely mentally retarded people in relation to the disability rights movement, which she argues has “followed a blueprint developed by persons of color, women, and gays and lesbians. All of these attempts by the marginalized to be recognized and fully enfranchised demand that the practice of liberalism be consistent with its tenets of universal equality and freedom” (Kittay 2001, 559). Severe mental retardation, however, may be “liberalism’s limit case”: “liberalism invokes a notion of political participation in which one makes one’s voice heard. It depends on a conception of the person as independent, rational, and capable of self-sufficiency. And it holds to a conception of society as an association of such independent equals” (559). For the mentally retarded individual, to be heard or recognized, to have her or his needs and wants responded to, requires “an advocate” and entails a relationship between dependent and advocate that “falls outside the conventional understandings of the relationship between equals within liberalism” (562), while also revealing the mutual dependency that is constitutive to our lives as humans. With dependency, care becomes central, both as a labor and in terms of its texture: “how the care is bestowed makes all the difference between the potential for harm and spirit-sustaining aid” (575). Kittay’s discussion of care points to limitations in Rose’s model of “active” biological citizenship discussed earlier. The demand for recognition for the severely mentally retarded demonstrates that ideas of “self-care” in which the self is understood as the independent, rational, and self-possessed actor who seeks to maximize his or her interest may be a potent fiction of liberalism, which contributes to the failure to be open to other ways of being and to the crucial place of care in making a world inhabitable. Acknowledging the demand for recognition may entail seeing the self in terms of relationships, such that the responses to the concrete other reveal the human self. In turning to AIDS activism, we see how existence and identity are tied to each other in ways that contrast with both Deaf activism and the neurodiversity movement. AIDS activism in the United States found an anchor in the gay community and was folded into that community’s forging of identity as it sought to challenge the linked stigmas of so-called deviant sexuality and disease. Yet, we might say that HIV/AIDS is not a biological condi-

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tion that people with AIDS would claim as their culture—a way of being in itself that demanded recognition. Rather, AIDS threatened ways of being both in terms of the stigma it generated and also in terms of biological existence. Activism can be understood as responding to these threats as well as to the deaths from AIDS that marked communities and individuals. In his study of the impassioned and often harrowing work of the AIDS movement in the late 1980s and ‘90s, Steven Epstein (1996) elaborates how the AIDS movement is “more than just a ‘disease constituency’ pressuring the government for more funding” but also an “alternative basis of expertise.” This “expertification” of the AIDS movement, however, grew not only out of AIDS activists learning of a new scientific language but also in their deployment of images and discourses that conveyed the matters of physical life and death at stake in scientific research and its regulation. Thus Epstein notes how, amid growing concern over the Food and Drug Administration’s regulatory requirements and the commitment of the National Institute for AIDS to placebo-controlled clinical trials, the notion of “genocide-by-neglect” emerged within activist rhetoric. As New York activist Larry Kramer argued, “Many of us who live in daily terror of the AIDS epidemic cannot understand why the Food and Drug Administration has been so intransigent in the face of this monstrous tidal wave of death” (quoted in Epstein 1996, 222). Seeing the FDA as one of the major barriers to access to AIDS treatments, the activist organization ACT UP, initiated in the late 1980s, staged events and demonstrations that drew on this notion of genocide. As Epstein describes it, the October 11, 1988, protest at the FDA headquarters sought to “ ‘seize control’ of what was labeled the ‘Federal Death Administration.’ Protestors fell to the ground holding mock tombstones with caustic inscriptions: ‘I got the placebo R.I.P.’; ‘As a person of color I was exempt from the drug trials’ ” (225). The emphasis on impending deaths of individuals and communities “touched by AIDS” shows us how activism around this condition tied the efforts to secure biological existence into varied projects of identity making. Working both to secure access to treatment and to transform how science was done with respect to AIDS were ways in which AIDS activists sought to secure the lives of themselves and others already marked by death and disease. In the search for treatment, AIDS activism also revealed both the scientific conventions that constituted “good science” and the form of the liberal contract that underpins human experimentation in medical science. Arguing on the basis of their rights as research subjects, activists sought to change the design of clinical trials from the convention of placebo control. While seeking to expand access to experimental therapies outside of the boundaries of clinical trials, activists drew attention to the implicit coercion in clinical trials research that was emerging as people with AIDS sought treatment. As an AIDS activist remarked, “[I]t was morally offensive to use access to treatment as a lever to force subjects into studies” (quoted in Epstein 1996, 227–28). Such controversies over the boundaries between research subject and patient, and over what constitutes “good science,” have been extensively examined in terms of the ways in which market-driven

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medical research and state regulatory norms work in tandem in the exploitation of the individual’s search for cure and the appropriation of bodies as biological resources. Adriana Petryna, in her study of the global clinical trials industry, argues that the conventions of “good science” are mobilized in the rationale for seeking “treatment naive” populations outside of the United States and Western Europe for clinical trials, which rely on the notion of informed consent in which subjects assume risks in their search for cure (Petryna 2009). Elaborating what he calls “biocapital,” Kaushik Sunder Rajan argues that structural violence underpins globalizing ethics in clinical trials. The violence of the liberal contract is evidenced in its freeing of subjects to make their bodies available to experimentation; in low-income sites, healthy subjects subject themselves to risk as a means of economic survival (Sunder Rajan 2006). Studying the clinical applications of human embryonic stem cell therapies in India, Aditya Bharadwaj insightfully remarks that the case of “structurally violent clinical trials” demonstrates how “the inherently violent nature of demarcated spaces . . . gets stabilized as a global gold standard [of ] good manufacturing or good clinical practice” (Bharadwaj 2014, 97). Demarcated spaces of science, or what Bharadwaj calls “normal science,” are those spaces restricted to a polity of interested professionals and demand specific ways of performing, witnessing, and validating. Focusing on a maverick experimental site that has gained a large patient base through the clinical application of experimental stem cell therapies, Bharadwaj shows how a sense of norm violation underlies its global reception as a “dangerous experiment.” The scientific director of this clinic, for instance, has not moved through the “obligatory passage points” of demonstrating efficacy in animal models and validation of one’s findings in the form of publications, which are the modality of witnessing for the scientific polity. As such, “[t]he agency of spinal cord patients traversing the globe in the search of recovery and their narratives of healing are rejected as mere placebo or desperation as opposed to credible data” (97). Bharadwaj’s analysis reveals limitations to straightforward narratives of innocent victimhood or willful, informed decision making, which seem to fall along taken-for-granted ideas of a North– South divide and of an unregulated Third World that the First World exploits. Instead, focusing on individuals’ search for therapeutic possibilities may cast the conditions for scientific knowledge and care in an entirely different light: “their frail and failing bodies, having reached the definite limits of therapeutic possibilities embedded in biomedicine, compel projects of experimental self-formation around the globe. For these protagonists, therapeutic options at ‘home’ come with a caveat: demands for care can be honoured only so long as these can be normalized within disciplinary confines of state, science, and clinic” (104). The search for cure and the limits of therapeutic security associated with citizenship that it reveals bring us back to Fassin’s insights with which we started this section: that in engaging life, there is more at stake than the regulation of populations and the deliberate actions of the state to create regularities. The challenge is to see how the biological and the social come to be absorbed into each other in concrete, specific ways. Fassin

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suggests that this absorption can be understood in terms of the biological and the biographical. The politics of life, he argues, involves the valuation of lives in terms of the inequality of lives as much as in the ways in which the physical existence of the singular living being is imbricated with the social norms and the social inequalities in which she or he is embedded. Might paying attention to the singular living being illuminate this imbrication of the biological and social in ways that escape the confines of regularities and deliberate action? If norms are not simply represented but also experienced in the body, how might newness emerge for the living being?

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We respond to these questions by first turning to the ways in which anthropology has approached the entanglement of the biological and the social. One concept that has been particularly powerful is that of local biologies, which Margaret Lock developed in order to acknowledge the significance of the biological and to challenge a presumed biological universality of the human body that biomedicine was seen to uphold (Lock 1993; Lock 2013). In her comparative study of aging and menopause in Japan and the United States, Lock raises the question of whether different symptoms are indicative of having been socialized into representing the same disease differently or whether these symptoms are expressive of a different biology. Indeed, she argues, the norms of gender and sexuality were part of how the body itself was experienced; they were not only representations of the body (Lock 1993). More recently, Lock and Vinh-Kim Nguyen extended the idea of local biologies through elaborating the notion of “biosocial differentiation,” which they define as “the continual interactions of biological and social processes across time and space that eventually sediment into local biologies” (Lock and Nguyen 2010, 90). “Local biologies” are here understood as “snapshots” of both evolutionary time and the longue durée of historical change: “Understanding the body as contextually situated means that we attribute variations in biology to regularities produced by temporal processes rather than to statistical laws.” It may be helpful at this point to consider the emphasis on contextualization in both the earlier and recent work of Lock more closely. Although the scholarship on local biologies has certainly gone a long way in unsettling any idea of a universal biology, we find it striking how context arises as, for the most part, a taken-for-granted entity through which the material body gains its particularity. In the commitment to illustrating the “context-dependence” of biology as defined against an abstract universal body, however, far less attention is paid to the problem of individuality, or variation as an aspect of the living being (see, for instance, Brotherton and Nguyen 2013; Hamdy 2013).8 Although Lock and Nguyen acknowledge that “humans are unique with respect to both their genomes and their lived experience and in this respect embodiment is personal,” the case studies they offer—on the neurological disease kuru, health disparities in birthweight

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and preterm birth, and the transformation of microbes by human activity—are attempts to discern what the authors call “regularities” that distinguish groups or “patterned variation in subjective bodily experience” based on the assumption that “inevitably certain experiences are relatively similar across groups of people living in shared environments” (2010, 91). If we take the problem of individuality—or variation—instead as a starting point for the mutual inflection of biological and social norms, “context” begins to appear in a different light. We take as our guiding inspiration here Georges Canguilhem’s repeated attention to the problem of individuality as a problem of the relation of the organism with the milieu.9 As is well known, in The Normal and the Pathological Canguilhem challenged a pervasive view in medicine, biology, and physiology that conceived of the normal and the pathological as a matter of quantitative difference (Canguilhem 1991). Instead, the concepts of the normal and the pathological, he argued, must be interpreted as vital values: for it is the organism as a whole that experiences disease. Take the presence of sugar in the urine, known as glycosuria—a classic symptom of diabetes. As Canguilhem argues, in seeing glycosuria in terms of physico-chemical laws—as a problem of colloidal equilibria—we fail to see the vital quality of glycosuria. A quantitative difference matters insofar as it takes on a vital value for the living being, be it the patient or the physician. It is the experience of the sick man that is generative of biological knowledge through therapeutics, or the search for cure. To put it on an even more quotidian level, we might recall Wittgenstein’s wonderful example in which he says that as I sympathize with a man who has pain in his hand, I do not look at the hand but look at the face or in his eyes—for I take it for granted that it is not the hand that suffers but the person who suffers. This attention to the concrete living being in its specificity forms the basis for Canguilhem’s elaboration of the concept of normativity. Drawing on Kurt Goldstein’s clinical observations of men with head wounds during the 1914–18 war, he remarks, What Goldstein pointed out in his patients is the establishment of new norms of life by a reduction in their level of activity as related to a new but narrowed environment. The narrowing of the environment in patients with cerebral lesions corresponds to their impotence in responding to the demands of the normal, that is, the previous environment. . . . The patient is sick because he can admit of only one norm . . . the sick man is not abnormal because of the absence of the norm but because of his incapacity to be normative. . . . The content of the pathological cannot be deduced, save for a difference in format, from the content of health; disease is not a variation on the dimension of health; it is a new dimension of life.” (1991, 186)

Health, on the other hand, cannot be simply equated with normal, as the pathological is “one kind of normal” and being healthy is “not only normal in a given situation, but being normative in this and in other eventual situations” (Canguilhem 1991, 196).

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Goldstein’s observations guide Canguilhem to the remarkable idea that there are “two kinds of original modes of life,” or the “dynamic polarity of life”: the normatively normal, in which normal constants may be transcended; and the pathologically normal, which “have the death of normativity” in them (206). At stake here is the relation of the living being and the milieu, neither of which are held constant, that defines the pathological for the living being. In his essay “The Normal and the Pathological” in Knowledge of Life, Canguilhem further elaborates the problem of individuality as a stance and a method (Canguilhem 2008). Taking issue with the Platonic conception of laws in experimental physiologist Claude Bernard’s biology, Canguilhem proposes life as an “order of properties”: “an organization of forces and a hierarchy of functions whose stability is necessarily precarious, for it is the solution to the problem of equilibrium, compensation, and compromise between different and competing powers” (125). While Bernard’s biology would see the individual as “a provisional and regrettable irrationality” against an ideal type, Canguilhem sees the individual as the site of novelty: “individual singularity can be interpreted as either a failure or as an attempt, as a fault or as an adventure” (125). Anomalies do not in themselves constitute pathological facts, but can acquire a negative vital value when their effects are assessed in relation to the milieu in which certain tasks have become unavoidable in the living being (129). The moment when anomaly shifts to disease cannot therefore be determined in advance, just as for Wittgenstein the scale of the human body or the range of the human voice cannot be determined in advance but must be found in each case (see Das 1998; 2007). Canguilhem remarks, “We cannot determine the normal by simple reference to a statistical mean but only comparing the individual to itself, either in identical successive situations or in varied situations” (2008, 113; emphasis added). We can appreciate that “individual singularity” is conceived here not only as a difference between individual living beings but also, in terms of variation, as an aspect of the individual himself or herself. Vital norms are internal to the singular concrete living being; as Canguilhem paraphrases Goldstein: “[T]he norm, he tells us, must help us understand concrete individual cases” (129). Lock and Nguyen’s impulse to discern the entanglement of “biological and social processes” as they sediment in local biologies is of great importance, but their research strategy is to discern differences across groups, whereas Canguilhem’s perspective inclines us to attend to the singular relationship of the organism with its environment.10 At this point we might ask, But isn’t this attention to individuality, or variation as an aspect of the individual, already at the heart of the medical gaze? As is well known, Michel Foucault, in The Birth of the Clinic, meticulously charts the shift from a pedagogy of species and classes to one of function and space made possible through pathological anatomy (Foucault 1994). Whereas in the former the individual was absorbed into the type, in the latter, individuality is the basis for understanding disease. As Foucault argues, through pathological anatomy’s detailing of the “most individual of flesh” (171), a new perception of death gives birth to a form of the individual: “It is when death became the

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concrete a priori of medical experience that death could detach itself from counter-nature and become embodied in the living bodies of individuals” (195). Human finitude thus authorizes a scientific discourse in which individuality is to appear in “the objectivity that manifests and conceals it, that denies it and yet forms its basis” (198). Foucault’s preoccupation here is with the positive knowledge that defines disease to stabilize health. Clinical norms emerge on the basis of the knowledge of individual bodies and their variations, but medicine’s knowledge of “the individual” cannot be confused with the problem of individuality for the living being. We suggest here that Canguilhem explores the problem of individuality precisely as a problem: not that which is settled, but that which is precarious and thus achieved through enormous effort. We can appreciate this precariousness in his essay “Is a Pedagogy of Healing Possible?” in Writings on Medicine (Canguilhem 2012). Here, Canguilhem explores how healing is placed awkwardly in and beyond the doctor–patient relationship. Whereas cure in medicine is defined externally through conventionally accepted knowledge for the purpose of treating the patient, healing “is experienced and avowed by the patient” (58). The patient’s experience with disease and the hope to recover a lost health introduces into medicine an experience that is not at all transparent. A patient who might be cured of infection might continue to insist on feeling unwell, while a patient might also become ill through being cured, by perceiving around himself or herself a “residual noxiousness” or an anxiety in the patient’s circle that lingers around an unforgiving disease. As such, “health and healing arise from a genre of discourse other than the one whose vocabulary and syntax we learn in medical treatises and clinical lectures” (59). Vital norms can be mismatched with clinical norms, a reality that the physician has difficulty considering precisely because the mismatch reveals the limits of his efficacy. Canguilhem thus rejects responses within medical education that would seek to transform this experience into a matter that can be adequately addressed through textbooks: “Should one introduce into university-hospital education of future doctors instruction in ‘convivial’ participation and thus tests and exams in aptitude for human contact? . . . Human contact is neither taught nor learned in the same way as the physiology of the autonomic nervous system” (64–65). To learn to heal, then, moves beyond medical knowledge proper to acknowledge that healing is not a return to a previous state, but rather a new state that is marked by the experience of disease.11 We now come to the question, Does an attention to the problem of individuality help us see “context” in a different light? Up to this point in our discussion, we have seen how vital norms are internal to the living being but would not have significance independent of the milieu. We have considered how the sick person experiences his or her milieu as a new milieu, one that is “narrowed” or shrunk, while a healthy person is able not only to stabilize the relationship to the milieu but also to transcend it by positing new norms. In this sense, we can suggest that the singularity of the living being and the milieu, while semiautonomous from each other, are woven together and being woven simultaneously. There is no fixed milieu as much as there is no taken-for-granted individual.

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In his essay “The Living and Its Milieu,” Canguilhem provides a critical comparison of theories of the milieu to find their common point of departure and thus postulate “their fecundity for a philosophy of nature centered on the problem of individuality” (Canguilhem 2008, 98). Canguilhem intricately traces the migration of the notion of milieu from Newtonian mechanics to biology, and the reversals in the relation of the living being and the milieu as this view acquired diverse lives in evolutionary theory, geography, and physiology. The notion of milieu in Newtonian mechanics followed a principle of action and reaction in which the milieu represented “an indefinitely extendable line or plane, at once continuous and homogenous” (103). While bringing the notion of milieu into biology, Comte’s Course of Positive Philosophy may have had a “hint of an authentically biological acceptance and more flexible usage of the word,” according to Canguilhem, but it ultimately gave way to “the prestige of mechanics, an exact science in which prediction is based on calculation” (102). This spatialized notion of milieu thus becomes the “universal instrument for the dissolution of individualized organic syntheses into the anonymity of universal elements and movements” (103). As this notion of milieu migrated into geography, “the treatment of anthropological and human ethological questions . . . became more and more deterministic, or rather, mechanistic.” The living in these studies is “light and heat, carbon and oxygen, calcium and weight. It responds by muscular contractions to sensory excitations; it responds with a scratch to an itch, with flight to an explosion. But one can and must ask: Where is the living? We see individuals, but these are objects; we see gestures, but these are displacements; centers, but these are environments; machinists, but these are machines. The milieu of behavior coincides with the geographical milieu, with the physical milieu.” But, as Canguilhem argues, as life offers solutions to problems, “human reaction to provocation by the milieu is diversified” (2008, 109). In Jakob von Uexküll’s study of animal psychology and Goldstein’s study of human pathology, Canguilhem observes, “the relation between the living and the milieu establishes itself as a debate, to which the living brings its own proper norms of appreciating situations, both dominating the milieu and accommodating itself to it” (113). This relation does not essentially consist in a struggle, but can also be one of “suppleness, almost softness.” In this relation, we can further appreciate how the living being’s responsiveness reveals a capacity for newness in the world. It is here that we might locate a significant tension between the way in which contextualization is deployed in local biologies and the relation of the living being and milieu that we are elaborating here. If contextualization is understood as demonstrating the impact or sedimentation of history in biology such that there is no universal body, we might further ask what picture of inheritance this notion of contextualization implies. Let us take Lock’s (2013) recent discussion of epigenetics, which she argues not only draws attention to the entanglements of nature/nurture at the molecular level but also may create new imaginations of what social justice and accountability would entail (304). Drawing on neo-Lamarckian thought, Lock proposes that in light of massive human tragedies, “matters of restitution should, surely,

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extend beyond individuals directly affected by trauma, and incorporate recognition of neo-Lamarckian marks of human atrocities and abuse.” Such neo-Lamarckian marks consist of the “intergenerational transmission of biological changes brought about by traumatic effects” (304). We might compare this perspective with the mechanistic view implicated in French neo-Lamarckism, which Canguilhem characterizes in the following way: “When the French neo-Lamarckians borrow from Lamarck, if not the term milieu in the singular and its absolute sense, then at least the idea they have of it, they retained of the morphological characteristics and functions of the living only their formation by exterior conditioning—only, so to speak, their formation by deformation” (Canguilhem 2008, 103; emphasis added). For Canguilhem, what is essential to Lamarck’s ideas is that the organism’s adaptation to, in Lamarck’s view, a largely indifferent milieu crucially depended on the initiative of the organism’s needs, efforts, and continual reactions: “The milieu provokes the organism to orient its becoming by itself. Biological response far exceeds physical stimulation” (115). With Canguilhem, we come to see the milieu from the vantage point of the singular living being, in which the place of perception is crucial: “The milieu proper to man is the world of his perception—in other words, the field of his pragmatic experience in which his actions, oriented and regulated by the values immanent to his tendencies, pick out quality-bearing objects and situate them in relation to each other and him” (118). The milieu is centered on the living being, whose precarious responses to need, to disease, to health lost, and to healing reveal its singularity. But, just as Canguilhem helps us see the problem of individuality for the living being, thus helping us see how the shift from anomaly to disease cannot be known in advance, we may ask of Canguilhem if the human voice and the scale and range of the human body, too, cannot be known in advance. For we might query how Canguilhem’s commitment to retrieving the vital from mechanism may lead him to take the human as a somewhat stable entity, clearly differentiated from other organisms through the customs, social organization, and technologies that define the existence of “man” as a living being. Whereas Canguilhem helps us attune to the variation internal to the living being as it is tied to a dynamic milieu, thus illuminating the mutual inflection of biological and social norms in man, there is far less attention paid to the tenuousness with which social norms, customs, and practices are aligned with man’s sense as a living being. How might we attend to the fragility of life, in the sense of a human form of life?

F O R M S O F L I F E : A W I T T G E N S T E I N I A N P R O V O C AT I O N

The network of concepts that have emerged so far—the relation between the natural and the social; the mobility of the normal and the pathological in both individual and collective life; the variability across social formations as well as that which is internal to the life of the individual; and how death is absorbed within life—all these issues point to concerns

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that traverse the whole field of anthropology rather than being confined within the boundaries of medical anthropology or STS alone. In this final section we turn to the concept of form of life from Wittgenstein to ask if we might find a different way of conceptualizing the issues we discussed—the way in which the natural appears as integral to the social but goes beyond the current conceptions of biology; how the singularity of individual lives is to be understood; and how forms of life might also nurture forms of death. As we suggested earlier, a more sustained attention to the expression “form of life” might help to introduce the idea that human beings have a life in language and that their expressions constitute a kind of natural history of humankind as found in a particular corner of the human.12 Otherwise said, language and the world have a relation that is internal to each. As is well known, Wittgenstein did not provide a sustained discussion of the notion of form(s) of life: references to this expression occur only five times in Philosophical Investigations (herewith PI), though there are other occasions when the phrase resurfaces, such as in Wittgenstein’s remarks on certainty (Wittgenstein 1953). This lack of a sustained discussion is not because the notion of form of life was peripheral in Wittgenstein’s philosophy but because he thought of it as an ordinary expression—not one that could serve as a conceptual schema. Hence he elucidated it with examples from ordinary life, showing how thought arises from immersion in a form of life. Also consistent with the form of writing in Philosophical Investigations that sets the appropriate tone for reading it, we find several voices in conversation—those of accusation and temptation and a countervoice, the voice of calm that reinstates the ordinary. If it is felicitous to describe Wittgenstein as an ordinary language philosopher, it is only on condition that we remember that his picture of the ordinary is neither that of Russell’s or Frege’s, nor is his commonsense that of Moore’s. Further, as Sandra Laugier (among others) has noted, a philosophy of language is a very different mode of engaging the issue of language than linguistic philosophy (or Oxford philosophy) and linguistics, so that even when words such as performance and practice seem to be common to both, there is a world of difference in how these are deployed (Laugier 2011, 2013). We consider it important that on the whole Wittgenstein does not think of form of life in the plural (forms of life or form of lives)—though in Remarks on the Philosophy of Psychology he does use the plural form (Wittgenstein 1980). What interests us is the resonances among the notions of form of life, culture, society, and sociality on the one hand and those of language-game, expression, and a sense of the natural as they pertain to notions of life on the other. Let us recapitulate the occasions when the expression “forms of life” appears in PI. Consider first the builder’s language, which consists of only four words, orders for bringing something to the construction site. After having discussed how it is easy to imagine a language consisting only of orders and reports in battle and other such contexts, Wittgenstein says famously, “And to imagine a language is to imagine a form of life” (PI para. 19). In other words, a language consisting of only orders might be thought of as an

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internal part of the operations in the battlefield, whereas it might be a sign of a strange relationship if it were to occur within a matrimonial relationship. The paragraph before the one cited above had already laid out beautifully the way Wittgenstein thinks of language as always incomplete—growing new dimensions within as a form of life grows or changes: “If you want to say that this shows them [some languages] to be incomplete, ask yourself whether our language is complete;—whether it was so before the symbolism of chemistry and the notation of the infinitesimal calculus were incorporated in it; for these are, so to speak, suburbs of our language” (PI para. 18). The picture of language as a city of words in which there are old and new streets, mazes of streets and squares, houses with additions from different periods, as well as new boroughs with straight streets and uniform houses is compelling for the idea that the form of life in which language is housed is heterogeneous with many layers of time; newness here is incorporated but retains the signs of its friction with previously existing forms. Consider now paragraph 23, where Wittgenstein states, “Here the term ‘languagegame’ is meant to bring into prominence the fact that the speaking of language is part of an activity, or of a form of life.” He then goes on to give examples that are varied and include such acts as giving orders and obeying them, forming and testing a hypothesis, doing an addition, asking, thanking, cursing, greeting, and praying. We take from this paragraph the idea that what Wittgenstein is emphasizing is that forming and testing a hypothesis or solving a sum in arithmetic on the one hand, and praying or greeting on the other, are all actions that spring from our form of life. It is not that the former activities are undertaken in response to objective requirements of science (as the references to the suburbs in the city of words as including notations in chemistry in the previous citation also attest) and the latter activities are indicative of cultural forms that are shared. Rather, both kinds of activities—those we might think of ordinarily as logical operations independent of culture and those we might think of as cultural activities par excellence, such as praying—are grown within a form of life. Thus, for instance, the fact that when we perform an addition in arithmetic we do not assume that the sum of the number will change according to the time of the day is something we naturally assume from within our form of life; it is what makes it possible to correct someone who gets the number wrong but not to come to blows over whether the sum changes when the clock strikes twelve. Now consider paragraph 241. It marks the third time that the expression “form of life” occurs in PI, and here Wittgenstein says: “ ‘So you are saying [here is the voice of accusation] that human agreement decides what is true and what is false?’—It is what human beings say that is true and false; and they agree in the language that they use. This is not agreement in opinions but in form of life.” Since the preceding paragraph, 240, had shown a scene in which mathematicians do not come to blows over the question of whether a rule was obeyed (they may write scientific papers about it), Wittgenstein suggests that to have an agreement in a form of life is what allows disputes to take one form rather than another; so our idea of form of life is

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deepened by the notion that agreement of the kind described by Wittgenstein is what constitutes the condition of possibility for disputes and disagreements to be voiced. Finally, we want to offer a thought from the remarks Wittgenstein made at the end of his life that are collected in the book On Certainty: “You must bear in mind that the language-game is so to say something unpredictable. I mean it is not based on grounds. It is not reasonable (or unreasonable). It is there—like our life” (Wittgenstein [1969] 1972). A form of life then rests on nothing more than that we agree, or find ourselves agreeing, on the way that we size up things or respond to what we encounter. In Stanley Cavell’s perceptive remarks, nothing is deeper than the fact or the extent of our agreement. But given that Cavell also says that I cannot know in advance as to what I am in accord with, one might say that life has a pulsating, dynamic quality and that the question of what it is to have agreement in a form of life is not a matter settled once and for all but has to be secured by the work that is done on the everyday. Bhrigupati Singh (2014), in his remarkable observations on village life in Rajasthan, India, conceptualizes this dynamic quality in terms of varying intensities, waxing and waning of affect, and movements across different thresholds of life. Let us pause for a moment and review the implications of the citations on forms of life that we have considered till now. First, Wittgenstein refuses a distinction between logical operations and cultural ones—the domain of nature that is studied objectively and the domain of culture in which our actions are oriented to meaning, affect, or other subjective states. Instead, he suggests that our form of life is the soil from which the activities grow—say, of praying and of solving mathematical puzzles—as well as the forms that disputations on these activities take. This way of imagining a form of life carries important implications for thinking about the “natural” that includes the biological but is not exhausted by it. Second, since a form of life rests on nothing more than the fact of our agreement—we read this as an agreement to have a future together—neither is it static nor does it follow some pregiven laws that provide the grid on which it will move. What makes this agreement possible is not a formal contract but because ordinary language “embodies all the distinctions men have found worth drawing and the connections they have found worth marking in the lifetimes of many generations” (Austin [1956] 1961, 182). How far does the idea of a form of life then correspond to our notions of shared conventions? Is Wittgenstein talking about forms of life as that of culturally distinct social groups whose agreements with each other rest on convention, or is he talking of forms of life as the human form of life—or, put another way, the form that our existence as human beings takes? We shall see the unique directions in which Wittgenstein’s discussion on these questions takes us. Third, a form of life, says Wittgenstein, is not reasonable or unreasonable; it is there like our life. What does this sense of a given mean? “What has to be accepted, the given, is—so one could say—forms of life.” (PI, para. 226e). Some have interpreted such statements as

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evidence of the conservative character of Wittgenstein’s writing; we shall argue that this passage (and others) point to a unique understanding of convention as forming a bedrock beyond which there is no appeal; or, as the famous example of the spade states, “[M]y spade is turned” (PI, para. 217). Yet Wittgenstein is also insistent that it is philosophical grammar (Stanley Cavell calls this “criteria”) that tells us what an object in our world is: yet grammar for Wittgenstein is completely arbitrary: “Grammar is not accountable to any reality. It is grammatical rules that determine meaning (constitute it) and so they themselves are not answerable to any meaning and to that extent are arbitrary” (Philosophical Grammar [1974], para. 184). This mutual implication of the conventional and the natural, the given and the arbitrary, blocks any temptation for a quick answer on the side of either mere convention or complete determination for defining what a form of life is, and it constitutes one of the richest archives one could imagine for thinking of our lives as humans. There is some debate in the literature as to whether a form of life corresponds completely to the boundaries of a given community—hence Wittgenstein is evoking an ethnological sense of a shared culture of habits and dispositions, rules and customs—or whether the expression refers to a single human form of life. But the issue as we see it is not an either-or kind of issue. We can follow a lead from Cavell’s remarkable analysis of the two separate dimensions of the expressions “form” and “life”—or the horizontal dimension of forms and the vertical dimension of life—the former corresponding to different societal arrangements and the latter to the idea of how life might be defined as a human form of life. It is helpful here to pay attention to the examples Cavell gives of the horizontal or ethnological sense of form and the vertical dimension of life. In the former case we might think of the difference between, say, coronation and inauguration, or different societal arrangements for the devolution of property. In the latter case the differences alluded to are those of being human or being animal or being bird—thus eating, pawing, or pecking, each act meeting a biological need but only in ways that humans or animals or birds do. Das (1998, 2007) has elaborated further that what language expresses here is the idea of a naturalness of the act of eating, pawing, or pecking as belonging to our lives as humans, as distinct from what is natural for animals or birds. It was this sense of the naturalness of what the human form of life implied that was broken in the terrible violence of the Partition of India that Das (2007) studied. She showed that women’s bodies were not only broken but claimed as if they were just property—surfaces to write male enmities on. Thus the parodying of the social contract by its sexualization did not simply rupture the fabric of the social but questioned the very idea that one had a human form of life. Thus instead of finding criteria by which we could determine what constituted the boundaries of a form of life or determining whether the expression “form of life” refers to the sociocultural differences or to the form human existence takes, we might, following Cavell and Das, think of these two aspects as nestling into each other, the social and the natural mutually absorbing each other. In a justly famous paragraph, Cavell says,

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We learn and we teach certain words in certain contexts, and then we are expected, and expect others, to be able to project them into further contexts. Nothing insures that this projection will take place (in particular, not the grasping of universals nor the grasping of books of rules), just as nothing insures that we will make, and understand, the same projections. That on the whole we do is a matter of our sharing routes of interest and feeling, modes of response, senses of humor and of significance and of fulfillment, of what is outrageous, of what is similar to what else, what a rebuke, what forgiveness, of when an utterance is an assertion, when an appeal, when an explanation—all the whirl of organism Wittgenstein calls “forms of life.” Human speech and activity, sanity and community, rest upon nothing more, but nothing less, than this. It is a vision as simple as it is difficult, and as difficult as it is (and because it is) terrifying. (1969, 52)

The agreement that Cavell then points out redefines our understanding of how language and the world are not external to each other but have an internal relation. Thus the issue is not whether we understand the meaning of words but whether we understand each other about when an utterance is a rebuke or an assertion or a joke. This agreement does not arise from the fact that we share the meanings of the words we use but rather arises because in learning a language we learn a form of life and hence can project words into the future with some assurance that they will be received in a spirit of our wanting to be understood by each other, for if our words cannot be received, they cannot be understood, either. Here is a remarkable formulation on the physiognomy of words in Remarks on the Philosophy of Psychology (vol. 1), where Wittgenstein says: “The familiar face of a word; the feeling that a word is as it were a picture of its meaning; that it has, as it were, taken its meaning up into itself—it’s possible for there to be a language to which all that is alien. And how is that expressed among us? By the way we choose and value words” (p. 3e, para. 6). Or the earlier “meaning is a physiognomy” (PI, para. 568). It is worth pausing to take a deep breath here, for Wittgenstein is cautioning us about any hurried conclusions about what is natural and what is mere convention. Is our feeling of familiarity with how we use words arising from the facts of shared conventions an arbitrary construct of culture? Or is this feeling something that evokes the idea of the naturalness of certain ways of being in the world that are recognized in one’s culture but that also allow us to project the idea of the humanity of an other who is embedded in a different social group? Let us see a remarkable formulation of this issue in PI (paras. 595, 596): It is natural for us to say a sentence in such-and-such surroundings, and unnatural to say it in isolation. Are we to say that there is a particular feeling accompanying the utterance of every sentence when we say it naturally? The feeling of “familiarity” and of “naturalness.” It is easier to get at a feeling of unfamiliarity and unnaturalness. Or, at feelings. For not everything that is unfamiliar to us makes

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an impression of unfamiliarity upon us. If we find a boulder on the road we know it to be a boulder but perhaps not for the one that has always lain there. We recognize a man as a man but not perhaps as an acquaintance.

We want to flag two thoughts here: first, that our feelings of familiarity arise from being within a form of life, so we accept certain actions—such as a way of speaking, or recognizing emotion, or expecting the world to be like this and not like that. If something appears to be strange, we know that we can find explanations, ways of reordering the object we found strange, from within our way of life. Say, a boulder that has always lain on a path I usually take is replaced by another boulder. I will have explanations that come to me—perhaps, that someone is going to build something there. Or, if I expect to see an acquaintance and find someone else, I know this person to be a man and not a tiger. I do not have to work to compare this man with an existing picture of men I have in my mind to recognize that this nonacquaintance is still a man. But now consider that something unfamiliar confronts me that is entirely outside my experience. I go to visit another country and find that everybody there assumes that twice two is five. What would it mean to say that though everyone believes twice two is five, it still is four. Wittgenstein says, “Well I could imagine that people had a different calculus, or a technique we should not call ‘calculating.’ But would it be wrong? (Is a coronation wrong?)” (PI, 226e–227e). What is fascinating in this account in which we think of rightness and wrongness is that these feelings seem to be grounded in something natural and something conventional. If everyone believes twice two is five, we must also imagine that what they mean by calculation is not what we mean by it—in other words, the sense of rightness and wrongness comes from feeling that this is not just a matter of “shared beliefs,” for other things that elsewhere Wittgenstein calls “the apparatus of everyday life” must be different, too. Finally, consider one of the last three passages in PI (para. 230e): If the formation of concepts can be explained by facts of nature, should we not be interested, not in grammar, but rather in that in nature, which is the basis of grammar?—Our interest certainly includes the correspondence between concepts and very general facts of nature. (Such facts as mostly do not strike us because of their generality.) But our interest does not fall back upon these possible causes of the formation of concepts; we are not doing natural science; nor yet natural history—since we can also invent fictitious natural history for our purposes.

The ideas here are of rightness, fitness, of our expressions carrying greater natural weight in such a way that we might come to feel that our language and world are in harmony with each other. Laugier (2011) elaborates that the issue for Austin, Cavell, and Wittgenstein is not that of a correspondence between a statement and some fact in the external world to which the statement refers; not even of correctness; but rather of the appropriateness of a statement within the circumstances—the fact that it is proper. Thus how we

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choose and value words is not about having a common framework for interpreting the meaning of what is said but what the person means in saying them—the sense in which one’s words are an expression of what matters to one. The whirl of organism refers in part to what Austin characterized as made possible by our ordinary language because it “embodies all the distinctions men have found worth drawing and the connections they have found worth marking in the lifetimes of many generations” (Austin [1956] 1961, 182), and partly because we share a sense of the natural, as in Austin’s example that one cannot say, “I stepped on the baby inadvertently.” It is not that the sentence is not grammatical or that words cannot be made to mean; rather, the sense of life that would support them slips away in such a construction: it violates our sense of what is the natural stance one takes to a child. Instead, if one had said, “I stepped on the child accidentally,” that would be a possible construction, for such accidents do happen. Here Austin shows the intimacy between language and the world by bringing expression in harmony with action that alludes to distinctions (inadvertently and accidentally) as natural to our way of being in the world. If the natural and the social thus mutually absorb each other, do they leave room for recognition of the singularity of the individual? We saw earlier that Canguilhem saw the individual as a site of novelty. Given his notion of disease as an experiment with life, he was interested in variations internal to the individual. Recently, Caroline Humphrey (2008) perceptively argued that “[c]ertain kinds of anthropological experience seem to require the conceptualization of singular analytical subjects: individual actors who are constituted as subjects in particular circumstances.” The circumstances she is alluding to are “the advent of new regimes, convulsions wrought by war, schisms of former social wholes, and, in general, the overturning of accepted patterns of intelligibility and the advent of radical new ideas” (Humphrey 2008, 357). One might think that there is some similarity in Canguilhem’s attention to the individual precisely because disease or old age invites experimentation with norms, normality, and normativity, and with Humphrey’s attention to collective upheavals that leave their traces in public archives through the work of individuals. Yet there are interesting differences, since for Humphrey the individual becomes a subject through a decision event, as in the example of the lives of specific individuals she discusses in the case of the revolution and counterrevolution in Inner Mongolia in 1926–30. Here individuals appear through their allegiance to or their betrayal of changing regimes and charismatic leaders. But whereas for Canguilhem disease is a normal part of life, and the new norms with which an individual experiments are embedded in his or her everyday, for Humphrey it is in leaving the everyday that the individual becomes a subject. The vision of singular individuals is strikingly different in scholars who take their inspiration from Wittgenstein and Cavell. Laugier (2011) asserts that whereas for Wittgenstein the central question was the common use of language, Cavell makes a new question arise from that problematic—that of the relation between an individual speaker

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and the linguistic community: “For Cavell, this leads to a reintroduction of the voice into philosophy and to a redefinition of subjectivity in language precisely on the basis of the relationship of the individual voice to the linguistic community: the relation of a voice to voices” (Laugier 2011, 633). Thus for Cavell an abiding question is how one finds one’s own voice in one’s history. Cavell repeatedly evokes Emerson’s essay on self-reliance to show that finding this voice is a matter not of a dramatic decision that would mark a before and an after but rather of learning how to align my voice with that of the others within a form of life. Heidegger (1962), too, had argued that an identification with the “we” that simply reproduces the common chatter does not allow an authentic (in the sense of mine) self to appear, but he also recognized that even when the same words are repeated as habit, when others repeat what I have said, my words get thickened through such social usage; they acquire greater reality. For Cavell, too, the question of singularity of the individual is not that of escaping the shared life in language but of being able to confront one’s culture with one’s own imagination of one’s words and one’s life. This could lead to the receiving of one’s voice as a gift from one’s culture; or, in the alternate case in which my voice is stifled through institutional arrangements, it might take the character of a rebuke. Cavell takes the former as demonstrated in the Hollywood comedy of remarriage and the latter in the case of denial of the woman’s voice in the genre of such films as Gaslight. The question is whether one’s culture is able to receive the individuality of the voice. Cavell grows this idea later by a profound analysis of perlocutionary objectives contained in passionate statements and wants philosophy to remain open to the order of law through a better understanding of expressions that carry illocutionary force when convention and context are in place, and open to the disorder of desire through perlocutionary force when expression must create a new context and carry the uniqueness of the individual voice. There might be some resonances between Humphrey’s contrast between “the situation” and “the event,” but for Cavell it is crucial that we recognize the fragility of the real in both cases. The everyday is not overcome in the process of individuation but appears as the natural expression through which desire finds expression, as in the classic declaration of love in which it is imperative that the “I” and the “you” are signaled out as unique rather than as representatives of institutional power. As Cavell (2005) says, if in declaring my love for you I am counting on institutional power (my wealth or patrimonial power) to ensure that you say yes, this fragile situation becomes a way of stifling your voice rather than risking a rejection because my desire is not answered. The risks to which statements with perlocutionary force are open shows that everyday life harbors within itself the possibility that modes of subjectivation might occur in circumstances that are most ordinary from the perspective of the collective and yet hold great risks for the individual, such as one finds in the vicissitudes of the erotic event or in the disorders of desire. The specific event, such as the experience of falling in love or falling into madness or encountering violence, reveals one’s vulnerability not only to an external world but also to the other with whom one inhabits the world. Even more terrifying is the thought that

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the fragility of our agreements reveals everyday life as a whole to be vulnerable, as we argued earlier. Laugier (2011) argues forcefully that this fragility is not only about our experience as subjective or opaque to us, but also about the character of the real. One of the threats of skepticism—one that gives everyday life sometimes a trancelike character—is that it cannot be resolved by giving more evidence about questions that besiege one when one is in the grip of the skeptical moment. Cavell argues that it is only by accepting the finitude and fallibility of our existence as human, the flesh-and-blood character of the concrete other, that skepticism’s doubts can be calmed. Although it would take another paper to show how the fragility and vulnerability of the real brings Cavell into the vicinity of Freud, we might indicate the direction of such an argument from Jacques Lacan’s ([1986] 1992) remarks on the precarious nature of reality:13 From a Freudian point of view, the reality principle is presented as functioning in a way that is essentially precarious. . . . No previous philosophy has gone so far in that direction. It is not that reality is called into question; it is certainly not called into question in the way that the idealists did so. Compared to Freud the idealists of the philosophical tradition are small bear indeed, for in the last analysis they don’t seriously contest that famous reality, they merely tame it. Idealism consists in affirming that we are the ones who gave shape to reality, and that there is no point in looking any further. It is a comfortable position. Freud’s position . . . is something very different. . . . Reality is precarious. And it is precisely to the extent that access to it is precarious that the commandments which trace its path are so tyrannical. (Lacan [1986] 1992, 30)

For both Lacan and Cavell the access to the real is precarious: the commandments do not protect us from being besieged by skeptical doubts, and though both would agree that we are the ones who give shape to our reality, this is only the beginning of the story and not its end. The role that defenses play in Lacan might be compared with the defenses we set up against the everyday in Cavell, which is why securing the everyday is an achievement. We move to a related issue—that of understanding how the notion of the limit becomes the point at which we can see the folding of the natural and the social coming apart. Let us consider briefly Wittgenstein’s “ethnological” examples, which are invariably of imaginary tribes or otherwise hypothetical individuals and which give PI an eerie character mirroring the trancelike character that everyday life sometime takes (see Das 1998). Thus, consider the imagined tribe in which there is no grammatical expression for the first person, or the imaginary tribe in which people act as if others have no soul or that they cannot dissimulate. One kind of interpretation of these imaginary tribes veers toward the idea that the function of conjuring these tribes whose interests and activities differ from ours is not to help us see how these tribes are “other minded,” but rather to illuminate aspects of our own forms of life. Thus Lear (1989; 2006) explicitly states that the sketches of the imaginary tribes who are, say, “meaning blind” or who lack the

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concept of a first-person perspective should not be seen as a genuine possibility or sites for future fieldwork, but conceptual forms of thinking about our own lives. Does this mean that for Wittgenstein no other form of life except our own is imaginable? We suggest that what these examples show is precisely how the world might become lost to us even as we live in it. Wittgenstein’s particular picture of this is that of our sense of the natural way of doing things being put into question when words, as Wittgenstein says, are drained of life. “We might say: in all cases, what one means by ‘thought’ is what is alive in the sentence. That without which it is dead, a mere sequence of sounds or written shapes” (Wittgenstein 1967, para. 143). But it is not only thought that is alive in a sentence but the possibility of the projection of words, of their being received, or of the way that they might be abandoned, becoming merely frozen slides, as the ethnographic examples from Das (2007) about women who could only withdraw their words in the face of violence that seemed to have destroyed the fabric not only of the social but also of the natural show. This is one way of reading the chapters in which several authors of this book try to convey what it is to lose one’s world. Healing, then, is not some kind of a return to the everyday after all accounts have been settled, but being able to inhabit this very space of devastation once again in a mode that Laugier (2013) and Han (2012) characterize as the stance of care. There are no guarantees that our language can regain life; indeed, one could be consigned to inhabiting the world as a spectral figure, a ghost. Yet the chapters show how embracing an idea of life and of death that goes beyond the notions of the biological as defined in science and technology studies will help anthropology to be genuinely open to the pathways that still remain open for reimagining human life as expressing the social and the natural in their mutual absorption as well as the fragility that comes from the ever-present possibility that the fine alignment between these two modes will be lost. Does a privileging of care as a mode of being in the world negate the search for social justice, or somehow distract from the forms of cruelty that modern states and neoliberal markets end up imposing on societies? The chapters in this book will show that the darkness of our times is made palpable precisely in the mode in which we can see how large events such as wars and occupations are nestled with the so-called small events, and that it is their mutual braiding with each other that defines the texture of living. If the idea of limits in Wittgenstein shows that we cannot know in advance the scale and shape of the human body, the human voice, or the way forms of life might nurture forms of dying, the concept of thresholds, which plays a vital role for Gilles Deleuze and Félix Guattari, makes a shift toward tracing the varying intensities, and the waxing and waning, of the forces through which life is reconstituted. Deleuze and Guattari (1980) describe the self as the threshold, a becoming between two multiplicities that are themselves made of contingent assemblages between the biological and the social, points of singularity in which several temporalities coalesce. Taking this idea into the anthropological register, Bhrigupati Singh argues that the concept can be animated ethnographically, demonstrating this through his attentiveness to varying intensities that relationships take over a period of time (Singh 2014). Thus such affects as intense political

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enmity at one threshold of life can become religious intimacy at another threshold due to impersonal forces such as the force exerted by nomadic gods and spirits. Instead of identities in which we are locked, Singh shows the dynamic quality of the agon that allows relations to be sustained in the everyday. Even powerful agencies such as the state are shown to embody contradictory aspects of punishment and nurture, now becoming the punitive god Varuna and now the friendly god Mitra of Indo-European mythology. If the notion of limit to forms of life shows what cannot be absorbed in the notion of life (madness, disintegration of the body through extreme violence), the notion of thresholds offers the possibility that something new might emerge to find once again the capacity to sustain life. Finding as founding, as Cavell would say, rather than searching for secure foundations in either nature or culture takes us to unaccustomed paths through which we seek to trace our contemporary conditions anthropologically, philosophically, and simply by learning to inhabit our everyday through mutual acknowledgment. This concept note that we have written is not a summary of the chapters that follow; nor does it provide the secure framework within which authors were invited to write. Instead, it has emerged from our rereading of the authors we think have shaped contemporary thought on questions of life and death. It was written after we had read and absorbed the chapters that follow, and so one way of reading it is in the mode of return, when we hope it will become apparent how much our interpretation of the issues we discuss in Lock, Canguilhem, Wittgenstein, and Cavell, or pathways into their texts that we found, were guided by the manner in which all the authors of this volume chose to engage their respective ethnographies and other kinds of empirical data. For such rich stimulation we can only say, Thinking is indeed an act of thanking.

N OT E S

1. Several notable anthologies on medical anthropology and the anthropology of biomedicine and edited volumes on topics as wide-ranging as global health, subjectivity, and postcolonial disorders illustrate that the very subject matter of health, disease, and suffering impels anthropologists to go beyond subdisciplinary boundaries, even as they rely on these boundaries as identifying fully formed fields of inquiry. For example, see Biehl et al. 2007; DelVecchio Good et al. 2008; Good et al. 2010; and Lock and Nguyen 2010. Arthur Kleinman, from his work on neurasthenia and the Cultural Revolution in China (Kleinman 1986) and his formulation with colleagues Das and Lock of the notion of social suffering (Kleinman, Das, and Lock 1997) to his most recent work on caregiving (Kleinman 2010; Kleinman 2014), clearly breaks subdisciplinary boundaries and embraces a notion of life beyond that of biological life. Michael Jackson, too, in his Life within Limits, also breaks these subdisciplinary boundaries by attending to the elusiveness of well-being and tying it to the sense of existential discontent that can haunt us (Jackson 2011). 2. Our purpose here is not to give a comprehensive review of this literature, as available in Helmreich 2011. Instead, we are drawing attention to tendencies within the literature that we see as particularly significant.

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3. However, see Michael Fischer, who has explored the ways in which technoscience and massive social traumas can challenge our standing languages. Such challenges, he argues, are experienced within social theory, which must pay detailed attention to the life that is forming around us. For Fischer, anthropology must remain an open venture, dissatisfied with overarching theories and broad claims that are about the alienation of the technicization of life, or globalization. See Fischer 2003 and 2007. 4. However, see Singh 2012 on the much older conceptions of the dual character of sovereignty as punitive and protective in the Indo-European mythic imagination. 5. We question the recent fascination with and concern over bioterrorism and DIY biology as generating the primary challenge to global health, ethics, and security as Bennett et al. (2009) and Collier et al. (2004) suggest. For it is not at all clear that such concerns over bioterrorism are accorded the same privileged status for the political and ethical across the globe. Moreover, bioterrorism or “terrorism” is stable only if a conventional geopolitics and politics of emergency rooted in the United States is the taken-for-granted way of seeing the world, such that deaths from “war” provoke a justification based on necessity, whereas terrorism inspires horror and fascination. In his acute analysis, Talal Asad turns the mirror back on the conventional discourse of terrorism and fascination with suicide bombing to ask what moral assumptions are embedded in this discourse and what moral responses are assumed in this distinction of “just war” and “terrorism” (Asad 2007). 6. We might compare our approach to Michael Walzer’s discussion of thick substantive morality and minimal morality, the latter of which could be identified in responding only to the most offensive injustices (Walzer 1994). Yet Walzer argues that minimalism can be identified in reiterated rules and principles across substantive thick moral cultures that reflect different histories and different versions of the world. We, however, would take issue with the idea of multiple versions of one world, and suggest that acknowledging the many-worlds problem entails a genuine challenge for thought as the otherness cannot be tamed into representational difference (see Das et al. 2014). 7. However, see the fascinating discussion between a blind philosopher and a sighted one on whether statements on seeing convey experiential knowledge or only propositional knowledge for the blind (Magee and Malligan 1995). 8. Duana Fullwiley’s work on localized biologies is perhaps one of the most significant innovations on Lock’s concept. Fullwiley, however, is exploring biologists’ definition of biological difference in Senegal as made possible through the territorial boundaries of the nationstate created under French colonialism (Fullwiley 2011). 9. The French philosopher Jean Gayon also sees the problem of individuality as a thread running throughout Canguilhem’s work—as axiological, ontological, and in the relationship of life and knowledge (Gayon 1998; see also Lecourt 1998). 10. It should be evident that our view of life as an analytical category is not derived from the perspective of a vitalist philosophy, which would take life primarily in terms of living organic matter. However, we find it helpful in this discussion of Canguilhem to note that Canguilhem himself was drawn to vitalism—not in terms of defining a set of properties to life, but rather as more a “method, or a commitment to an ethical system more than a theory,” that keeps life and knowledge in an open relation. For a further discussion, please see the chapter titled “Aspects of Vitalism” in Canguilhem’s Knowledge of Life and Paola Marrati and

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Todd Meyer’s excellent introduction to that work, translated and edited by Daniela Ginsburg and Stefanos Geroulanos (Canguilhem 2008). 11. We may note, however, that the impact of narrative medicine as a pedagogic tool in medical education today has shifted more attention to the noncognitive dimensions of medical care, and that it is widely recognized that convivial participation cannot be taught in the same way that the nervous system can be taught. 12. Our intention is not to review the large corpus of literature that has emerged on the idea of form of life but rather to show how thinking of both—forms and life together—might take the discussion on life in a different direction than that of the biopolitical state or sovereignty. For a thoughtful analysis of the role and place of Wittgenstein in anthropological discussions, see Salgues 2008. Salgues is particularly attentive to the differences in the posing of epistemological questions in the United States as opposed to France, and the traffic between these two academic cultures. 13. Although we are not aware of any published sources in which Cavell engages Lacan directly despite his (Cavell’s) deep interest in showing where his differences with Freud rest, one of us (Das) attended some of Cavell’s seminars on Lacan in the late 1990s in which the vulnerability of human action came up for discussion.

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Brusky, Amy Elizabeth. 1995. Making Decisions for Deaf Children regarding Cochlear Implants: The Legal Ramifications of Recognizing Deafness as a Culture rather than a Disability. Wisconsin Law Review, January/February, 235–70. Bynum, W. F. 1993. Policing Hearts of Darkness: Aspects of the International Sanitary Conferences. History and Philosophy of the Life Sciences 15 (3): 421–34. Canguilhem, Georges. 1991. The Normal and the Pathological. New York and Cambridge, MA: Zone Books. ———. 2008. Knowledge of Life. New York: Fordham University Press. ———. 2012. Writings on Medicine. New York: Fordham University Press. Cavell, Stanley. 1969. Must We Mean What We Say? Cambridge: Cambridge University Press. ———. 2005. Philosophy the Day after Tomorrow. Cambridge, MA: Belknap Press of Harvard University Press. Collier, Stephen J., Andrew Lakoff, and Paul Rabinow. 2004. Biosecurity: Towards an Anthropology of the Contemporary. Anthropology Today 30 (5): 3–7. Das, Veena. 1998. Wittgenstein and Anthropology. Annual Review of Anthropology 27: 171–95. ———. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Das, Veena, Michael Jackson, Arthur Kleinman, and Bhrigupati Singh. 2014. The Ground Between: Anthropologists Engage Philosophy. Durham, NC: Duke University Press. Deleuze, Gilles, and Félix Guattari. 1980. Mille Plateaux. Vol. 2 of Capitalisme et Schizophrénie. Paris: Les Editions Minuit. DelVecchio Good, Mary-Jo, Sandra Teresa Hyde, Sarah Pinto, and Byron J. Good. 2008. Postcolonial Disorders. Berkeley: University of California Press. Epstein, Steven. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press. Fassin, Didier. 2009. Another Politics of Life Is Possible. Theory, Culture & Society 26 (5): 44–60. ———. 2014. The Parallel Lives of Anthropology and Philosophy. In The Ground Between: Anthropologists Engage Philosophy, edited by V. Das, M. Jackson, A. Kleinman, and B. Singh, 50–70. Durham, NC: Duke University Press. Fischer, Michael M. J. 2003. Emergent Forms of Life and the Anthropological Voice. Durham, NC: Duke University Press. ———. 2007. Four Genealogies for a Recombinant Anthropology of Science and Technology. Cultural Anthropology 22 (4): 539–615. Foucault, Michel. 1994. The Birth of the Clinic: An Archaeology of Medical Perception. New York: Vintage Books. ———. (1975–76) 2003. “Society Must Be Defended”: Lectures at the Collège de France 1975–1976. New York: Picador. ———. (1977–78) 2007. Security, Territory, Population: Lectures at the Collège de France 1977–1978. New York: Picador. Fullwiley, Duana. 2011. The Enculturated Gene: Sickle Cell Health Politics and Biological Difference in West Africa. Princeton, NJ: Princeton University Press.

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Gayon, Jean. 1998. The Concept of Individuality in Canguilhem’s Philosophy of Biology. Journal of the History of Biology 31 (3): 305–25. Good, Byron J., Michael M. J. Fischer, Sarah S. Willen, and Mary-Jo DelVecchio Good. 2010. A Reader in Medical Anthropology: Theoretical Trajectories, Emergent Realities. Malden, MA: Wiley-Blackwell. Grinker, Richard. 2008. Unstrange Minds: Remapping the World of Autism. New York: Perseus Book Group. Hage, Ghassan. 2014. Eavesdropping on Bourdieu’s Philosophers. In The Ground Between: Anthropologists Engage Philosophy, edited by V. Das, M. Jackson, A. Kleinman, and B. Singh, 138–58. Durham, NC: Duke University Press. Hamdy, Sherine. 2013. Political Challenges to Biomedical Universalism: Kidney Failure among Egypt’s Poor. Medical Anthropology 32:374–92. Han, Clara. 2012. Life in Debt: Times of Care and Violence in Neoliberal Chile. Berkeley: University of California Press. Heidegger, Martin. 1962. Being and Time. New York: Harper & Row Publishers. Helmreich, Stefan. 2011. What Was Life? Answers from Three Limit Biologies. Critical Inquiry 37 (4): 671–96. Humphrey, Caroline. 2008. Reassembling Individual Subjects: Events and Decisions in Troubled Times. Anthropological Theory 8:357–80. Hunt, Nancy Rose. 2013. Suturing the New Medical Histories of Africa. Vienna and Zurich: LIT Verlag. Jackson, Michael. 2011. Life within Limits: Well-Being in a World of Want. Durham, NC: Duke University Press. Kittay, Eva Feder. 2001. When Caring Is Just and Justice Is Caring: Justice and Mental Retardation. Public Culture 13 (3): 557–79. Kleinman, Arthur. 1986. Social Origins of Distress and Disease: Depression, Neurasthenia, and Pain in Modern China. New Haven, CT: Yale University Press. ———. 2010. Caregiving: The Divided Meaning of Being Human and the Divided Self of the Caregiver. In Rethinking the Human, edited by J. M. Molina and D. K. Swearer, 17–31. Cambridge, MA: Harvard University Press. ———. 2014. The Search for Wisdom: Why William James Still Matters. In The Ground Between: Anthropologists Engage Philosophy, edited by V. Das, M. Jackson, A. Kleinman, and B. Singh, 119–37. Durham, NC: Duke University Press. Kleinman, Arthur, Veena Das, and Margaret M. Lock. 1997. Social Suffering. Berkeley: University of California Press. Lacan, Jacques. (1986) 1992. The Ethics of Psychoanalysis, 1959–1960: The Seminar of Jacques Lacan. London: Routledge. Lakoff, Andrew, and Stephen J. Collier. 2008. Biosecurity Interventions: Global Health & Security in Question. New York: Columbia University Press. Laugier, Sandra. 2011. Introduction to the French edition of Must We Mean What We Say? Critical Inquiry 37 (4): 627–51. ———. 2013. Face aux désastres: Une conversation à quatre voix sur la folie, le care, et les grandes détresses collectives. In Face aux désastres: Une conversation à quatre voix sur la

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folie, le care, et les grandes détresses collectives, edited by A. M. Lovell, S. Pandolfo, V. Das, and S. Laugier. Paris: Les Editions Ithaque. Lear, Jonathan. 1989. On Reflection: The Legacy of Wittgenstein’s Later Philosophy. Ratio 2 (1): 19–45. ———. 2006. Radical Hope: Ethics in the Face of Cultural Devastation. Cambridge, MA: Harvard University Press. Lecourt, Dominique. 1998. Georges Canguilhem on the Question of the Individual. Economy and Society 27 (2–3): 217–24. Lock, Margaret M. 1993. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press. ———. 2013. The Epigenome and Nature/Nurture Reunification: A Challenge for Anthropology. Medical Anthropology 32:291–308. Lock, Margaret M., and Vinh-Kim Nguyen. 2010. An Anthropology of Biomedicine. Malden, MA: Wiley-Blackwell. Magee, Bryan, and Martin Malligan. 1995. On Blindness. London: Oxford University Press. Misra, Kavita. 2000. Productivity of Crisis: Disease, Scientific Knowledge and State in India. Economic and Political Weekly 35 (43/44): 3885–97. Ortega, Francisco. 2009. The Cerebral Subject and the Challenge of Neurodiversity. BioSocieties 4:425–45. Petryna, Adriana. 2009. When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. Princeton, NJ: Princeton University Press. Puett, Michael. 2004. To Become a God: Cosmology, Sacrifice, and Self-Divinization in Early China. Cambridge, MA: Harvard University Asia Center. Rabinow, Paul. 2011. The Accompaniment: Assembling the Contemporary. Chicago: University of Chicago Press. Rabinow, Paul, and Nikolas S. Rose. 2006. Biopower Today. BioSocieties 1 (2): 195–217. Ramachandran, V. S. 2012. The Tell-Tail Brain: A Neuroscientist’s Quest for What Makes Us Human. New York: W. W. Norton & Company. Rose, Nikolas S. 2007. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ: Princeton University Press. Rose, Nikolas S., and Carlos Novas. 2005. Biological Citizenship. In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, edited by A. Ong and S. J. Collier, 439–63. Malden, MA: Blackwell Publishing. Salgues, Camille. 2008. Un nouveau Wittgenstein encore inapprochable: Le rôle et la place du philosophe dans l’anthropologie. L’Homme nos. 187/188: 201–22. Singh, Bhrigupati. 2012. The Headless Horseman of Central India: Sovereignty at Varying Thresholds of Life. Cultural Anthropology 27 (2): 383–407. ———. 2014. Poverty and the Quest for Life: Spiritual and Material Striving in Rural India. Chicago: Chicago University Press. Stoler, Anne. 1995. Race and the Education of Desire: Foucault’s History of Sexuality and the Colonial Order of Things. Durham, NC: Duke University Press. Sunder Rajan, Kaushik. 2006. Biocapital: The Constitution of Postgenomic Life. Durham, NC: Duke University Press.

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Taylor, Charles. 1994. The Politics of Recognition. In Multiculturalism and the Politics of Recognition, edited by A. Gutmann, 27–78. Princeton, NJ: Princeton University Press. Varela, Francisco. 1999. Ethical Know-How: Action, Wisdom and Cognition. Stanford, CA: Stanford University Press. Walzer, Michael. 1994. Thick and Thin: Moral Argument at Home and Abroad. Notre Dame, IN: University of Notre Dame. Wittgenstein, Ludwig. 1953. Philosophical Investigations. Malden, MA: Blackwell Publishers. ———. 1967. Zettel. Berkeley: University of California Press. ———. (1969) 1972. On Certainty. New York: Harper & Row, Publishers. ———. 1974. Philosophical Grammar. Malden, MA: Blackwell Publishers. ———. 1980. Remarks on the Philosophy of Psychology. Vol. 1. Oxford: Basil Blackwell.

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SECTION 1

NATALITY, SEXUALITY, REPRODUCTION

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Much recent work on the anthropology of reproduction demonstrates how technological developments such as in vitro fertilization (IVF) and stem cell technologies are remaking life and also making new kinds of life. Though scholars writing on the “newness” of reproductive technologies also recognize that lineages of technology bequeathed from the past are numerous and are equally formative of contemporary social life, there is a tendency to privilege new reproductive technologies in their analyses. Yet, to the extent that reproducing the individual and reproducing the social are interconnected events, we cannot but ask how reimagining life is also an act of reimagining death, which takes us to a serious consideration of the dangers that shadow all forms of reproduction. Indeed, while students of new reproductive technologies have been acutely aware of the embedding of these technologies into what are called the social technologies of kinship, law, and gender, there is curious divide between those who privilege biopolitical citizenship and new biology as technology—and those who look at social reproduction through older vocabularies of social institutions. Reproduction is never then a matter of the simple givenness of biology, as the concept note in the opening chapter also laid out in some detail. The collective achievement of the seven chapters in this section is to think of reproduction in the crevices between the everyday and crisis, and also to take a more expanded view of technology to include material and symbolic mediations performed to fill the gaps between desire and fulfillment, to avert dangers and help channel aspirations for good or for ill through the social forms in which technologies are embedded. In different ways these chapters interrogate the picturing of all relations as technology. Let us take the most quotidian of circumstances in which a woman is giving birth. Why is this also a moment shadowed by the risk of dying or bringing forth a baby that is deemed inappropriate? At the simplest level, the first anxiety relates to the physical dangers of childbirth. As the last chapter in this volume by Ali and Das (chapter 44) shows, historically the reproductive years were the most dangerous years for the survival of girls and women—a situation that marks the lives of women in many low-income countries in the contemporary world. The second anxiety might relate to the sexual and reproductive history of a woman; the valuation of one kind of child versus another, as for instance the child being of the wrong gender or the wrong color; and the consequences that might hold for the making of the family. The first chapter in this section, on the theme of maternal mortality, technological innovations, and therapeutic strategies, written by the Stanford-ISERDD Study Collective, takes the scene of high maternal mortality in one of the poorest states in India, Uttar Pradesh, and examines how an innovation in the design of rural health for women links the goal of reducing maternal mortality to increasing institutional births. The chapter shows that the State speaks of its actions with far greater certainty than is warranted, as

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if the relation between institutional births and reduction of maternal mortality were an established fact. It is, however, the changes in practices—the creation of a new cadre of health workers and a conditional cash-transfer program, which become bundled with other techniques such as those of meeting targets for sterilization operations and medical techniques for management of pain—that reconfigure the power dynamics of the family. Kinship, technology, and the State intersect to create unique therapeutic strategies, which might be measured on one dimension by the State and on completely other dimensions by the users in terms of what constitutes the success or failure of an intervention in public health. In a fascinating follow-up of this study, Veena Das observes in a footnote that in the course of one year one can observe very interesting changes in which even dais (traditional birth attendants) begin to incorporate the administration of oxytocin injections not for management of emergencies but for normal births on the grounds that without an injection infants do not “come out”; in other words, nature begins to be imagined differently. We might recall here Wittgenstein’s remark on the “invented natural history” that we discussed in the general introduction to this book. Technology appears in a more recognizable form in the chapter titled “Conceiving Life and Death,” in which Aditya Bharadwaj and Marcia C. Inhorn do a subtle reading of the darker side of the so-called hope technologies, especially assisted conception and stem cell technology. With devastating simplicity the authors state that while they are seen as making, gestating, and supporting life, these technologies are also replete with “little deaths.” The little deaths include destruction of elusive embryos created in IVF labs or for stem cell generation, or the excess embryos that have to be terminated in assisted conception so that the mother can safely carry the other embryos to term. Remarkably, Bharadwaj and Inhorn are able to navigate the bitter politics that usually pits conservative pro-life proponents against advocates for giving women full rights over their bodies by sidestepping argument through principles and instead allowing experiences of loss and premature endings to find expression. Instead of confining the discussion of ethics to the authoritative and authorizing discourses of bioethics alone, they draw on wider understandings of how loss and premature endings are braided with notions of regeneration and sustenance from wider Hindu and Islamic philosophical traditions. Vaibhav Saria’s chapter (chapter 3), “The Pregnant Hijra,” takes up the question of reproductive futures from a different angle. He tracks hijra aspirations for bearing children and the future it promises, and the narratives of constant failure that accompanies that aspiration by aligning the social and the mythological in a very creative way. Saria asks what it is that survives this scene of failure. What survives, it seems, is the ability of the hijra to turn her infertile body into a source of blessing for all couples to become fertile; there is an exquisite play between curses and blessings in the way that all those whose carnality rubs against the social in the wrong way are shown to be the figures through whom ideas of true love acquire life. The vocabulary of science and technology studies that now dominates anthropology makes us think of relations only as networks;

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or kinship as primarily a form of technology. Saria’s chapter offers a meditation on different ways of thinking of kinship—perhaps religious, perhaps mythological—for it shows that the life that flows in us draws from other lives known and unknown. Living on the penumbra of the social, the lives and loves of hijras show us our indebtedness to forms of life that are tangential to the normative social order and yet necessary for its continuity. Anaid Citlalli Reyes Kipp’s chapter, “New Lives for Children,” and Eleana Kim’s “Transnational Adoption and (Im)Possible Lives” both address the question of reproductive futures through the figure of the adopted child. As Reyes Kipp points out, new laws have redefined adoption in Mexico on the model of biological rather than contractual relations. Legally, for the first time, adoption in central Mexico creates an irrevocable status that extinguishes all previous kinship ties of the adoptee. The legal severance of all ties with the birth family allows functionaries of the State to reconfigure families in such a manner that poor women or those seen to have a dubious moral character are now unable to claim any rights over their birth children. As the child becomes an emblem of the nation’s futurity, kinship ties authorized by the State are much more rigid, to the exclusion of the looser arrangements of fosterage or temporary adoptions through which the poor earlier managed to retain connections between generations. In her insightful analysis, Eleana Kim takes a close look at transnational adoptions in the case of Korea that began in 1953 and grew massively in the decades of the seventies and eighties, when poor women gave up their children for adoption to parents in Western countries in the hope that they would have a better future there. As these women grew into middle age and South Korea began to rewrite the story of its past as an orphanexporting nation, history and biography came together in uncanny ways. First, the label for the children who were given up as “war orphans” came under tremendous pressure as it became evident that these children were not orphans at all. Second, as the movement to connect adoptees with their birth mothers in Korea (as is the case with many other transnational adoptions), adoptees had to reimagine their pasts: while many joined the movement to claim relatives who they did not know had existed, for others the new revelations had to be reconciled with the actual lives they had lived in Europe or the United States with loving parents and relatives. The birth into something new turns out to be also a death or a disavowal of something old. The creativity with which the young adoptees try to stitch these parts of broken biographies—and even for those who disavow the pasts coming to light now, there is a haunting feeling of the possibility of some other life that could have been theirs. If technologically assisted birth is accompanied with the enormous grief of having to choose which embryos to preserve and which to destroy, the lives re-created through adoption also might be steeped in the contradictory affects of hope and grief at the inability to repair a past that comes unbidden. The themes of sexual and reproductive violence in the context of the birth of a new nation as described by Nayanika Mookherjee, in chapter 6, show the complex web of relations through which individual and collective futures tie the themes of sexuality, natality,

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and reproduction. The ordinariness of rape during periods of collective violence, and the enormity of it that has come to light in several studies, still staggers the imagination: an estimated two hundred thousand women were raped by Pakistani soldiers and their collaborators in a period of nine months during the war in Bangladesh in 1971. The deep question of why women are raped during such social upheavals has no simple explanation; in this case, Pakistani soldiers often claimed that making women forcibly pregnant would improve the Bengali genes and make the country more Islamic. We should be cautious in attaching too much explanatory weight to such statements, but they do show how large political projects come to haunt or distort the experience of carnality and intimacy. Bangladesh, in embracing the project of rehabilitation of the raped women and proclaiming them to be “war heroines,” reversed the everyday notions of shame and abandonment that were the staple of Partition stories in India in 1947. Yet in inaugurating the new nation, the children born of such unions could not be absorbed into the body politic: either women were “cleansed” through abortions, or the children were given away in transnational adoption. The disconnect between national regeneration and the expulsion of the children to an elsewhere is still unfolding. Mookherjee’s chapter provides an important commentary along with that of Kim and Reyes-Kip on the relation between the shaping of intimacy and the imagination of the polity in terms of race, nationality, and religion. The absorption of the natural in the social as seen through the lens of reproduction rehearses some familiar themes of the biopolitical state and its differential evaluation of different kinds of lives, but these essays also show that the biopolitical is itself shaped by older lineages of thought derived from religious or mythological imagination through which family, kinship, and nation learn to shift their horizons. With Sylvain Perdigon’s chapter, “Bleeding Dreams,” we come back to the scene of the everyday—but a wounded everyday, in which Palestinian refugees in the camps of Tyre in Palestine try to make sense of their encounters with al-Qireyne. Lying between the experience of dreaming and (dis)possession, al-Qireyne is said to be particularly dangerous to pregnant women. In the camps of Tyre, war is not encountered through the dramatic enactment of sexual and reproductive violence as it was in Bangladesh, but its injuries are registered in the bodies of women, manifested in the anxieties that surround them regarding their ability to provide care to their children in such fraught circumstances, or even their ability to carry a fetus to full term. Above all, there is the devastating, unsaid question of what is owed by the living to the dead. With the proliferation of trauma discourses in global humanitarian discourse to mark the condition of Palestinian refugees, can we say that they have lost the ability to engage a future? Perdigon is not contesting that the trauma of war might manifest itself through the displacement of violence onto one’s intimate relations, but he is pointing to another alternate space that is created to attend to the quandaries of kinship through which everyday life is engaged. The picture he presents is not a comforting one, but it is one that asks us to think of how people in a torn and conflicted world attend to the task of creating sustenance for themselves and for the generations to come.

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Together these seven chapters help to inaugurate the discussion on how the scene of natality is also turning out to be the scene of mortality in our cotemporary conditions. Reproduction is far from automatic or habitual; the whole domain points to the task entailed in the being-together that must be forged in the face of the experience of death and dying of individuals, of relationships, and of the body politic itself. The chapters are also a demonstration of how forms of life nurture forms of dying and of the fine negotiations between a changing milieu and the adventures and risks that individuals take for everyday forms of crises.

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1 MATERNAL MORTALITY, TECHNOLOGICAL INNOVATIONS, AND THERAPEUTIC STRATEGIES Stanford–ISERDD Study Collective

In their understanding of biotechnologically mediated life as evidenced in assisted conception and stem cell therapy that depends on the harvesting of embryo cells, Aditya Bharadwaj and Marcia Inhorn (see chapter 2 of this volume) see such life as pregnant with death. Such conjoining of life and death, they argue, leads to fundamental questions such as, When does life begin? and, What are the criteria for determining death? In this paper we examine the conjoining of life and death at a much more quotidian level—that of the dangers of pregnancy and childbirth in the context of poverty and resource constraint. While the questions raised by biotechnologically mediated birth and the use of embryos for new therapies raise issues that are seen as critical and of deep concern to the bioethical community as well as to legal scholars, the ordinary dangers of childbirth are squarely placed in the domain of public health, in which ethical questions are seen as largely settled. The emphasis shifts in such cases to modalities of intervention and implementation. Yet, we argue that the dangers to the lives of mothers and infants entailed in practices of childbirth when neither preventive care nor the facilities to manage complications of pregnancy are easily available might be regarded as the tragedy of the ordinary, to use a phrase coined by Anne Lovell (2013) in a different context. We find here a tight embrace between life and death, pain and pleasure, grief and joy that bringing a new life into the world entails in these social worlds. Looking at the ordinary worlds of women and children allows us to ask how, within what has been called the larger problematic of missing women in South Asia, the state addresses the problem of the risks to life that women face in their reproductive years. (See World Bank 2012 for a succinct

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discussion of these issues in a comparative context.) Looking at the interventions on reproductive health that address this most ordinary of tragedies will, we hope, enable us to better decipher the dynamic of the family and the state in this crucial area of social life.

CONTEXT

India accounted for 20% of the globally estimated maternal deaths and 30% of neonatal deaths worldwide in 2010 (UN Interagency Group for Child Mortality Estimates 2013). Although the rates of maternal mortality declined in India between 1999 and 2010, a rate of 212 annual deaths per 100,000 births (Vora et al. 2009) is still considered unacceptably high. As with several other indices of public health, the aggregate figures hide a huge regional variation. Whereas Kerala, Tamil Nadu, and Maharashtra show a steep decline in maternal mortality, with a maternal mortality rate (MMR) of 81, 97, and 104, respectively, nine other states (Rajasthan, Uttarakhand, Uttar Pradesh, Madhya Pradesh, Chhattisgarh, Orissa, Jharkhand, Bihar, and Assam) account for 62% maternal deaths in India (Randive, Diwan, and De Costa 2013). The government of India has, over the years, instituted several national-level programs to reduce maternal mortality. The most significant of these programs were the Child Survival and Safe Motherhood Program (1992–97) and phase one of the Reproductive and Child Health Program (1997–2004). The emphasis in these programs was on improving institutional capacity by increasing the availability of emergency obstetric care. Despite what were seen as improvements in supply-side factors, the decline in maternal mortality was slow. Although the proportion of institutional deliveries in this period increased from 26% to 41% and skilled birth attendance increased from 33% to 47%, further reduction in maternal mortality was seen in policy discussions to be dependent on increasing the demand for institutional births. A consolidated program for improving rural health that was implemented in 2005 placed special emphasis on reducing maternal and infant mortality in rural areas, especially in eighteen states with poor public health indices. Figure 1.1 gives a rough timeline for the different programs initiated since 1945 and shows the shift that has happened—at least in officially stated norms—from family-planning initiatives to programs that address safe pregnancy and safe delivery. The mission statement of the National Rural Health Mission (hereafter NRHM) might be regarded as a turning point in health policy toward the goal of increasing institutional births as a means of reduction of maternal and infant mortality, especially in rural areas in underserved states. This shift in policy followed the recognition at the global level that the policy of training midwives, or “traditional birth attendants,” to address maternal deaths was not working and that the causes of maternal deaths such as undiagnosed preeclampsia, severe bleeding, infections, and anemia required facilities for emergency obstetric care. The core strategies of the mission statement of NRHM (NRHM 2013) emphasized local control and empowerment, and toward this end a new cadre of female health workers were

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Child Survival and Safe Motherhood (CSSM) program First program to categorically focus on maternal health

Family Planning program FP and FW program merged and increased focus on maternal health

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figure 1.1 Policies and programs for reducing maternal mortality in India from 1945 to 2010. (FW, family welfare; MCH, maternal and child health; FP, family planning; RTIs, reproductive tract infections; STIs, sexually transmitted infections.)

created. They were called ASHA workers—from an acronym for Accredited Social Health Activist. (The word asha also implies “hope” in many Indian languages.) The mission statement also envisaged the enhancement of facilities at primary health subcenters, which, along with more skilled staff and equipment, is also given unassigned funds under the control of local elected bodies. The main feature of the ASHA workers was that the recruitment process was left in the hands of a locally elected body such as the village or block-level panchayat, to which the ASHA worker was to be accountable. She was to be “the interface between the community and public health system” and also to assist the ANM (auxiliary nurse midwife), who is usually responsible for conducting antenatal checkups and maintaining villagelevel records with regard to pregnancy, childbirth, and the immunization of children. Many ANMs also conduct deliveries at the level of primary and community health centers, though complicated deliveries were to be referred to the district hospital, where facilities for cesarean sections and blood banks are available. The idea behind this distribution of roles seems to be that because the ANM is seen as a salaried employee of the government, the ASHA worker, as someone far better integrated into the village community, could assuage any fears women and their families might have of governmentrun facilities and thus make them more accessible. Accordingly, the ASHA workers do not receive a regular salary but are given case-wise compensation or incentive for each institutional delivery if they accompany the pregnant woman. In addition to these features, India also launched a program of conditional cash transfers to women who gave birth in a government facility (fourteen hundred rupees in each case of delivery) in the high-focus states that had high rates of maternal mortality, under a new

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2010

scheme entitled Janani Suraksha Yojana (JSY) in 2005. It was hoped that with the incentive of cash rewards, demand for institutional births would register significant improvement. However, using secondary data from two large population-based national surveys—Sample Registration Survey and Annual Health Survey, both conducted by the government of India—Randive, Diwan, and De Costa (2013) recently concluded that though institutional births had gone up significantly in the nine states mentioned above (from 20% to 49% in five years), the impact of institutional deliveries on the reduction of maternal mortality seemed to be marginal.1 Other studies point to the same results. Thus, Lim et al. (2010) reported that implementation of JSY in 2007–8 was highly variable across different states— from less than 5% to 44% of women who had given birth in medical institutions receiving the cash incentive. The authors found that the poorest women were generally excluded. They calculated that although JSY had some impact on the reduction of perinatal and neonatal mortality, they could not detect any impact on the reduction of maternal mortality. Lim et al. based their findings on statistical data made available through district-level household surveys conducted at two data points: 2002–4 and 2007–9. More localized studies led to similar results. Thus Gupta et al. (2012) reported on an observational study conducted in a tertiary hospital in Madhya Pradesh comparing data on changes in institutional births and maternal mortality between 2003–5 and 2005–9. They found that although institutional deliveries increased under the JSY scheme by 42.6%, the absolute number of maternal deaths also increased in this period. It seemed likely that because the hospital served as a catchment area, the cash-transfer scheme enabled cases in which complications arose during delivery (but in which the mother could not be saved) to be brought to the hospital. So what kind of story might one tell from these figures? Randive et al. (2013) draw two lessons from the statistics that are of relevance here. First, they offer the hypothesis that the conditional cash transfers attract more women with uncomplicated pregnancies to the institutional settings; if complicated pregnancies are primarily happening at home, they argue, it is likely that institutional births would not have a significant impact on maternal mortality. However, in the absence of reliable estimates of the proportion of women with complications who give birth at home versus those who undergo institutional deliveries, it is hard to say anything conclusive about this issue. The second speculation is that though more women are giving birth in institutional settings (both public and private), the quality of care in these institutions is poor. An evaluation report of JSY stated that very few public-sector institutions actually have the facilities for attending to complicated births. It is likely, then, that many rural women manage to reach only those facilities that are not equipped to deal with complications of pregnancy (Lim et al. 2010). Finally, one of the important innovations made under the National Rural Health Mission, a program launched in 2005 by the government of India to improve health infrastructure especially for poorly served rural populations, was the introduction of an ambulance service as a public–private partnership with GVK and EMRI, who are considered to be pioneers in emergency medical management in India. The success of the program, first introduced in Andhra Pradesh, led the government of India to take the responsibility of

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bearing a major part of the operational expenses; the facility is now available in sixteen states in India. The purpose of the ambulance service is to transport patients in cases of emergency to district hospitals or PHCs (primary health centers). The ambulance service 108 is geared to transporting cases requiring critical care, such as accident victims, to specialized facilities, whereas the 102 service is especially geared to pregnant women and children who can be taken either to a PHC where they have registered earlier or to morespecialized facilities on referral. The protocols on whether an ambulance under this scheme will take a pregnant woman to a private facility or only to public facilities varies by states. At the time that fieldwork was conducted for this study, it was the 108 service that was used for the transportation of pregnant women in Uttar Pradesh. Despite the availability of this service in Gujarat, women were not as dependent on the ambulances because of much better roads and the availability of alternative transport.

I N N O VAT I O N , I N T E RV E N T I O N , A N D T H E F I E L D O F S O C I A L R E L AT I O N S

The term institutional delivery stands not only for the actual event of birth in a medicalized space but also for provisions for a medical oversight of the entire period of pregnancy that would ensure the health of mother and child. Toward this end, the recommendations for the implementation of JSY included at least four antenatal checkups (ANCs), including maternal immunization against tetanus, regular monitoring of the pregnant woman’s weight and blood pressure, and advice on nutrition as well as diagnostic tests for diabetes and HIV infection. In much public health discussion of the demand-side statistics, the pregnant woman is seen as either compliant or noncompliant—depending on whether she chooses to give birth in an institutional setting or at home. This binary of compliant versus noncompliant women is premised on the idea that a medical innovation such as the inauguration of the JSY program has a teleological goal and that the success of the program depends on the ability to devise measures through which success or failure may be measured. We do not contest the importance of using measures such as MMR and IMR (infant mortality rate)—but we are interested in asking whether an innovation might be seen as releasing a number of potentialities that families and health care workers might be able to use in ways that are different from how these innovations were envisaged by policy makers. Said otherwise, What are the field of possibilities and the network of relations within which an innovation comes to be implemented? Already, from the works of scholars such as David Mosse (2005), we know that a development scheme may have multiple intended and unintended consequences and that these might be very differently evaluated by a range of actors who are affected by the scheme. (See also Goodfellow 2015 for an analysis of small technologies and their impact on social relations.) Yet official evaluations have no means of taking account of these multiple outcomes, focusing only on those outcomes that are officially recognized as the aim of the scheme.

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In our research, we did not follow the usual anthropological method of intensive work at one or more sites over a long period of time. Instead, our team carried out an initial investigation into the variety of ways that the JSY program was implemented at the level of primary health centers (PHCs), community health centers (CHCs), first referral units (FRUs), and district hospitals as cases moved up and down from the home to the institutional spaces where deliveries were taking place in two districts in Uttar Pradesh and two districts in Gujarat. Uttar Pradesh is a high-focus state under the JSY program because of the low rate of institutional deliveries. In contrast, Gujarat is a low-focus state for JSY and had earlier implemented a statewide program to promote institutional deliveries called Chiranjeevi Yojana (CY). In all we visited eighteen villages in two districts in Uttar Pradesh and nine villages in two districts in Gujarat and conducted over 250 interviews with health officials, medical officers, ANMs, ASHA workers, traditional midwives (dais), village headmen, experienced women who help with deliveries, pregnant women, and mothers as well as members of households in which birth had taken place in the last few years. Observations were conducted at every level of the local health system, with one member of the team taking notes of interactions for two to three hours at the peak time of patient visits. In addition, we attended meetings of ANMs and ASHA workers at the PHC, where we had the opportunity to ask questions and learn about the difficulties that these women were reporting. We did not observe any birth in process, but we did interact with women and their family members as they waited in PHCs or in the hospital. Finally, there were two focus-group discussions in Delhi, one with ASHA workers and ANMs and the other with women from one of the slum areas in Sector V from NOIDA, in the National Capital Region, conducted in the pilot phase of the project. Though lacking in depth, our data gave us a perspective on the wide variety of concerns that people expressed as well some emerging patterns that we could detect in the way birth was being reimagined as a process that happens outside the domestic space. Our focus in this chapter is on the two districts of Uttar Pradesh that we visited (Allahabad and Bareilly), because adding Gujarat to the already-complex issues of variations that we encountered in the field in Uttar Pradesh would have made the chapter unwieldy.

M AT E R N A L M O RTA L I T Y A N D S TAT E I N T E RV E N T I O N

As we saw in the time line of various government-sponsored schemes designed to address maternal and child mortality, although new plans were introduced at regular intervals, their relation to earlier plans was not spelled out in policy documents with any clarity. At the level of officially stated norms, the earlier emphasis on family planning gradually gave way to plans for the reduction of maternal and child mortality. But as we see later, at the local level new goals were simply added to earlier ones, with the result that ANMs or health workers who had to translate these goals into action were much more prone to see continuity rather than discontinuity in the goals they pursued on the ground.

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Sarah Pinto (2008) describes the scene of medical care in the context of a village in rural Uttar Pradesh in the following terms: In what Michel Foucault (2000) called “governmentality” morally laden messages and biomedical techniques flow across boundaries between institution and non-institution, between real and ersatz doctors, clinics and households. . . . Where bona fide health institutions are concerned, governance is made up of recurring, short-term schemes aimed overwhelmingly at limiting births, though many also intend to provide care, often in traveling “camps” and by way of local agents. . . . Amid the cycling of schemes, things meant to be permanent— government health centers and hospitals—are at best unreliable, at worst empty shells, a set of inconsistencies and uncertainties in which poor infrastructure means not knowing when and for how long there will be electricity, when or if a bus will come, when or if a doctor will be present at the health center, how much one will be expected to pay. (362)

As an example of the recycling of government schemes that come and go, Pinto explains how the family-planning scheme active in 2001 ceased operation in 2006 while a new government rural health program began its early stages of design and implementation. Pinto’s description of the geographies of blame that she tracks in the government documents is very effective in showing how stereotypes of women (especially those from lower castes) as ignorant and uncouth were sustained in government documents. However, Pinto does not actually show us how new innovations are absorbed or abandoned; the descriptions of schemes remain general rather than specific. Thus, instead of looking at the specifics of the new scheme, she assumes that there is continuity with earlier schemes. To cite Pinto: “The ‘dai trainings’ [the term dai generally refers to traditional birth attendants, or TBAs] so often presented by NGOs and the government as part of ‘innovative’ designs have been a familiar feature of intervention from the late nineteenthcentury, and the village health worker, with an ever-shifting set of responsibilities, has been a staple of post independence health planning” (2008, 362). Though our data lacks the depth that comes from intensive long-term work in the same site, as in Pinto’s work, it is more attentive to discontinuities and the variations that we encountered in the course of our investigations in the different villages and PHCs in both Uttar Pradesh and Gujarat. Part of this variation, we submit, comes from the different ways in which the different provisions encoded in JSY under NRHM were adapted and even transformed as women and families devised therapeutic strategies to take advantage of the presence of ASHA workers, the new ambulance service for transportation of pregnant women and their children, and the conditional cash-transfer scheme. There was also a changed communicative landscape brought about by the availability of cell phones and improved infrastructure of roads in many villages we visited. Some state governments such as that of Karnataka had made the distribution of cell phones to ASHA workers part of the NRHM scheme since 2013. In other states such as Uttar Pradesh, a scheme for providing mobile phones to ASHA workers was launched by the

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chief minister in January 2013, but systematic data and follow-up studies on the implementation of this scheme are lacking. At the time of our fieldwork, ASHA workers had access to mobile phones but could also use any phone available within the household or the village headman to call the ambulance service.

THE ANM, THE ASHA WORKER, AND THE DAI

Within the complex web of health professionals found at the local level, the ANM, the ASHA worker, and the traditional (trained or untrained) dais stand out as those with the necessary skills to help in the pregnancy and delivery process. Of these three, the ANM receives two years of basic training in maternal and child care and is responsible for maintaining villagelevel records on pregnant women and infants, immunization, and antenatal checkups, as well as for conducting uncomplicated deliveries at the PHC level or at CHCs where facilities for deliveries are available. The ASHA, as described earlier, is a village-level worker who receives some training in health education but whose main job is to provide a link between the pregnant woman, her family, and the medical facility where the pregnant woman is to be taken for antenatal checkups, delivery, and postnatal checkups. The ASHA worker is supervised by the ANM assigned to a particular area. Dais, or “traditional birth attendants,” typically learn their craft from older women in their own caste groups and from other dais but some received short-term training under different government training programs that have now been discontinued. Dais were usually from the lower castes, since the work of assisting at delivery was considered polluting. With the new emphasis on institutional deliveries JSY scheme, the role of the dais is not officially recognized, but we found that some dais had found employment in government hospitals or in private nursing homes as helpers or ayahs. Finally, in Uttar Pradesh, we found that dais continue to assist in home births but that in Gujarat the profession seems to have all but disappeared as institutional births have become the norm. Finally, among some caste groups in Uttar Pradesh, it was the elder women of the family who assisted at births, with no assistance from any other attendant, though in cases of difficult birth or other complications they might try to transfer the woman to a specialized facility. Even when older women or other relatives conducted the delivery, the task of cutting the cord and burying the placenta was assigned to a dai or a woman of a lower caste among both Hindus and Muslims. We give below short descriptions of how the availability of ASHA workers and the conditional cash transfers have led families to reconfigure their relation to the traditional practices of childbearing even as they learn to take advantage of new opportunities that have become available to them.

CASE 1: MEERA DEVI

Meera Devi is a twenty-nine-year-old woman from a village in the Allahabad district of Uttar Pradesh. She has three children. Her husband, who owns a rice mill, migrated from

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another village in search of economic opportunities. His parents and brothers live in their village of origin. When Meera Devi became pregnant with her first child, she went to her parents’ village for the delivery because there were no older women from her conjugal family around to provide her with the care she needed. It is often the case that women are sent for the first delivery to the parents’ house, since it is felt that a young woman needs her mother around her when she gives birth for the first time. Meera Devi’s younger two children were born at a government hospital at some distance from her village. As she related the events, when she became pregnant the second time, the ASHA worker from the village came to register her name. Beyond filling out the necessary details in her register, the ASHA worker seemed to have done little by way of advice or help during the pregnancy. Meera Devi had not even been informed about the cash compensation in the case of an institutional birth. At the completion of the ninth month of her pregnancy, Meera Devi felt some discomfort, and the ASHA worker accompanied her to the PHC for what she thought would be a checkup. A dai who was in attendance at the PHC (according to Meera Devi, neither the doctor nor the staff nurse was present) advised her that birth was imminent. Meera Devi, however, had not come prepared for a delivery, nor was the absence of the doctor or nurse very reassuring. She returned home, but the pains increased. Her husband thought it was best for them to go straight to the hospital. The ASHA worker pleaded that she did not have any access to transport, so Meera Devi’s husband took her on his motorbike to the district hospital. It was an easy delivery at the hospital. The baby was born healthy, and she found the hospital staff to be competent and kind. Meera Devi attributed the ease with which she could negotiate the hospital to the fact that one of their relatives worked as a nurse in that hospital and thus could use her contacts with the doctors and nurses to ensure that Meera Devi received good care. She had not been aware that she was entitled to fourteen hundred rupees for giving birth in the hospital, and so she failed to claim the cash incentive. After the birth of her third child, though, she decided to opt for tubectomy, which was performed at a government hospital, and for which she was given two hundred rupees as incentive. We might note two important attributes of this family. First, the husband and wife are relatively autonomous in the decision making regarding where the delivery is to take place and in seeking out a terminal method for dealing with future pregnancies. In other cases we recorded, the decision making was much more embroiled in joint family dynamics, with the husband’s mother playing a major role in the reproductive decisions pertaining to the daughter-in-law. Second, what made the government hospital accessible for this family and gave them the confidence to go there in the first place was that they could count on the relative who worked in the hospital as a nurse. The ASHA worker played a minimal role—so although the delivery took place in a hospital, Meera Devi was not aware of the need for antenatal and postnatal checkups. Yet we see how ideas about institutional delivery, the obligations of ASHA workers, and the entitlement to cash as incentive for institutional delivery had begun to circulate in these villages. Many families

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had begun to integrate these provisions in a variety of ways to craft their therapeutic strategies through which pregnancy and birth were managed. However, it is important to note that a straightforward mapping of the differential utilization of existing services to caste or religious hierarchies would be misleading. Whereas the ASHA worker played a rather cursory role in the care of Meera Devi, whose relative affluence and connections meant that she could use other resources to receive the kind of care her husband and she thought appropriate, the next case shows how important the ASHA worker turned out to be in the therapeutic decisions of another family—one that did not possess the material and symbolic capital of Meera Devi’s family.

CASE 2: PUSHPA

The second case we describe is that of Pushpa, a Dalit woman who lived with her husband’s mother and her two-and-a-half-year-old son at the edge of the same village. Dalit households, assigned the lowest position in caste hierarchy, are typically located at a distance from the upper castes in multicaste villages. Pushpa’s husband was a daily wage laborer who worked in the city and hence was able to visit the village only periodically. The field diary kept by Rajan Singh, an ISERDD team member, describes the material conditions of the house as follows: “At the edge of the village were a line of houses in which Dalit families live. The tiny houses were made of mud and straw—there was one small room in which there was nothing except a string cot. Some clothes were hanging on the wall.” Pushpa was very forthcoming with her story. She had been married for six years. She became pregnant in the third year of her marriage. The ASHA worker came to her house to register her name and then took her to the CHC at Kondhiyara (the block headquarters, an administrative unit lower than the district), where she gave blood and urine samples and received a routine ultrasound screening. She was given iron tablets and a nutritional supplement and advised to return for a follow-up after three months. The ASHA worker visited her every two or three months and gave her advice on nutrition, on activities to be avoided, such as lifting heavy objects, and on the maternal immunization she was to receive. She recalled receiving an injection from the ANM but otherwise did not go back to the CHC for any checkups. In the ninth month, when Pushpa experienced labor pains, she phoned the ASHA worker, who took her to the hospital in an auto rickshaw—even paying for the transport. A staff nurse attended the delivery after Pushpa was put on a glucose drip. Pushpa felt that the birth was quicker because of the drip and that overall she was treated kindly. She attributed the care and kindness to the fact that she was familiar with both the ASHA worker and another ANM who used to visit the village regularly. “I will go to the hospital for my next delivery, too, because there are good facilities in the hospital,” she told us. Pushpa also received fourteen hundred rupees, and though some of this money was used

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as gifts to lower-level staff, she was generally very satisfied with the services she had received at the health center. Pushpa’s mother-in-law, Ameera, joined the conversation at one stage. She said that she herself performs deliveries but usually only for members of her extended biradari (collateral kin). In the case of her daughter-in-law, too, she had tried to conduct the delivery in the house, but when Pushpa’s pains increased they decided to call the ASHA worker for transport to the hospital. In Ameera’s opinion, the great advantage of a hospital birth is that the family does not have to deal with the dirt and pollution of childbirth. The cash incentive, she said, is very helpful to poor families, and the fact that the ASHA worker stays with the woman during the birth process is reassuring for the woman as she deals with her pain. Ameera said that women used to be scared of hospitals because they would be left alone and nurses were often rude and unsympathetic when the women cried in pain. For the kinds of reproductive issues not covered by the JSY program, many families reported consulting local practitioners who have clinics in the larger villages or on highways. Practitioner markets are saturated by untrained practitioners known in the villages as jhola chaap doctors (doctors known by the bags of medicines they carry). In this case, too, Pushpa had spent about two thousand rupees on a private doctor to get fertility treatment. The doctor had dispensed some pills and syrup, but she did not comment on whether she thought the pregnancy was a result of this treatment. Pushpa’s case demonstrates the complex ways in which caste and economic hierarchies work in relation to the entitlements created by the state. Several people reiterated that villagers who were rich or were higher in status preferred private nursing homes because the high prestige they enjoyed was better protected by refusing any cash compensation and opting for more-expensive private nursing-home facilities. Contrary to what one might have expected, the presence of the ASHA worker enabled women who were lower in caste status to access medical institutions, whereas more-affluent villagers from upper castes could use their resources to either get direct access to government hospitals or use the private nursing homes that are now available in larger villages. The next few cases we present are from Muslim villages in the Allahabad district, where we interviewed both men and women. The negative stereotypes about Muslims within the local administration became evident as we encountered two policemen on motorcycles at the boundary of a village who advised us not to go into the village because it was inhabited by “bad characters” (badmash). A little ahead we met four Muslim men hanging out together. Each had an interesting and somewhat different story to tell, pointing out how an innovation is not implemented in an empty space but is rather influenced by family dynamics of the intended beneficiaries. Although policy makers may think of policy innovations as targeting discrete conditions, people’s experiences with the other sectors of the health system have an influence not only on acceptance and rejection of a new policy but also on how a particular aspect of it might be integrated into a specific therapeutic strategy.

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C A S E 3: R A H I M U D I N

Rahimudin, a thirty-year-old man with four children, stated that all his four children were born in government-run facilities—the younger three in the PHC in a nearby large village and the oldest in another PHC in a somewhat distant village where his wife’s parents resided. His wife had gone for the first delivery to her parents’ village. In each delivery his wife received help from the ASHA worker to push forward the claim to receive fourteen hundred rupees, as these were institutional deliveries, and his wife was successful in receiving this amount. He was not sure what kind of diagnostic or preventive care his wife received in the prenatal checkups—which is not rare for men who claim they know little about “women’s affairs.” Rahimudin was critical of the kind of care patients generally received in government facilities, pointing to widespread absenteeism and corruption, but said that the presence of ASHA workers had made it easier for women to get better care in government facilities. He narrated an incident when he had fractured his arm and the doctor at the CHC asked him to come to his private practice for consultation, where he was charged five thousand rupees for diagnostics and treatment. This was despite the fact that facilities for X-rays and treatment of factures were available at the CHC. He added that “without medicines and injections, women cannot give birth easily.”2

CASE 4: SARFRAZ

Sarfraz was older (about forty years old) than the other three men we met. He said that all his four children were born at home. When his wife became pregnant for the first time they had gone to the government hospital for a checkup. A nurse in the hospital had given a cursory checkup and asked his wife to come back the next month. His wife found the nurse to be curt, if not outright rude. She also told him how many women were screaming in pain but no one among the hospital staff was giving them any attention or offering comfort. Sarfraz also added that in government facilities, they “make a cut even before the pains have started” and this makes the woman very nervous (aurentein ghabra jati hain). They had decided to have the birth at home with the help of the local dai, and since the first birth went well, they followed the same procedure for the next three births. Though all four babies had been born at home, Sarfraz said that the ASHA worker had put in enormous efforts to secure the cash incentive in the case of the last two births and so had taken his wife soon after the birth to the PHC to get the checks for institutional delivery issued. Out of the fourteen hundred rupees, she had given nine hundred to his wife and kept the rest as the fee for her own efforts to get the money. Sarfraz did not resent the ASHA worker taking a share of the money since she had to put forth extra effort to get the cash compensation—showing that ideas of corruption and fairness might be at odds between policy makers and users.

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In two Muslim-dominated villages that we visited we found that most households had some information about the cash compensation for institutional deliveries, the services of ASHA for pregnant women, and the newly instituted ambulance service. Each of the women we met had at least four living children, and it was usually later in their reproductive life that they had been able to use these services. The ASHA worker was not from their own village; she was a Hindu woman who came from a neighboring village. The women in these Muslim villages felt that because the ASHA worker was not from their village, she tried to do her job but lacked the ability to put in the extra effort that ASHA workers who were seen as “daughters-in-law” of the village could put in by way of companionship and care. As one woman said, the ASHA worker comes to the village every week; she registers the pregnant women; she fills out the information on the members of the household; she distributes sattu (nutritious chickpea powder); she informs them about the necessity of getting immunization against tetanus and also about the cash compensation they are entitled to—but because she is not a resident of the village, women do not have easy access to her services. In a few cases the ASHA worker had been able to accompany the woman to the PHC for delivery. However, most of the time the ASHA worker could not come in time when called, and the families were not confident that they could navigate the paperwork or complete other formalities that would ensure timely attention at the PHC or CHC. This is why the families here preferred to use a dai who also came from a nearby village, and would go to the PHC or the district hospital only in cases when complications such as prolonged labor arose that could not be handled by the dai.

C A S E 5 : M U M TA Z

What is women’s experience of institutional deliveries in the Muslim villages? It’s interesting that younger women expressed opinions about the desirability of medical interventions that were quite different from the views of older women and men. For instance, Mumtaz, a young woman, said, “Bas jao, sui lagaate hain, pani chadate hain aur ho gaya baccha—as soon as you go there, they administer an injection, put you on drip, and the child pops out.” From this woman’s perspective, a pressing issue was that of the management of pain and the shortening of labor. Even as concern is rightly expressed in the medical community about the overuse of drugs such as oxytocin to stimulate contractions, the policy documents are silent on the management of pain. Though for the women the concern with the safety of the mother and the child and its relation to the competence of the person conducting the delivery is paramount, it is not unlinked to the question of how pain is managed. Mumtaz said that it was important for the jaccha (birthing mother) to receive companionship and care. Mumtaz said that some nurses in the hospital were very unsympathetic if she cried out in pain, admonishing her or even slapping her. One of the older men said that women were given very little information on what would happen during the delivery and so were dependent on bits of information that they

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had picked up from others who had attended meetings called by health officers or learned from neighbors about the actual experience. As one older woman who had all her children at home said, “Earlier, there was a fear of the unknown among women. They wondered, How will a child be delivered? Will the doctor use instruments? How will the baby be pulled out from the womb? They feared that they may be administered a wrong injection or their vaginas might be ‘cut’ or they might be operated upon, after which they will become weak and may not be able to conceive again.” Another woman explained, “Aurat mein nuks aa jaata hai” (literally, “a defect comes in the woman”).3 What is this “defect,” and what “operation” is being referred to? Unpacking this enigmatic statement will help us see how the use of modern biomedical techniques is seen both as a lure and as something to be feared. The term operation is a multivalent one— referring to both the possibility of a cesarean section and a sterilization operation. Dais often summarized the hospital experience as that of being administered a “cut”—referring to operations as well as the performance of episiotomy. Although medical opinion is rightly wary of an increased use of episiotomies and oxytocin injections to manage labor in India and other low-income or middle-income countries as a routine measure, women might be alternately attracted by the possibility of less pain and its implied promise of safety for mother and child or apprehensive as to what such measures might do to their sexual and reproductive futures.

T H E C U T A S M E D I C A L I Z E D B I RT H

India officially abandoned contraceptive targets, including sterilization targets, in 2000, but at the local level health workers and ANMs are given targets for sterilization every month and are expected to comply. Some scholars have argued that the draconian measures for male sterilization used during the National Emergency in 1976 were not a deviation but represented long-standing policies of mass sterilization through both family-planning clinics and camps in which the emphasis was on population control and not patient care (Vicziany 1982a, 1982b; on the high rates of female sterilization in the southern states, see Steinbrook 2007). Our interviews with ANMs confirmed the findings from other studies that meeting targets for female sterilization are an important part of the ANM’s job description as understood at the local level; the health bureaucracy at this level does not even register that this practice has been officially abandoned. Some ANMs spoke with great pride of their success in meeting targets. The interviews with women on this issue were much more ambivalent. In the Muslim villages both men and women confirmed that sterilization was “against their religion.” According to them, the imams regularly announced in the mosque that if a man or woman were to be sterilized he or she would lose the right to read the namaz (obligatory prayer) or to keep rozas (obligatory fasting) during the holy month of Ramzan. None of the men or women we spoke to had any experience of forced sterilization or of having attended a sterilization camp, but elusive references to sterilization came up

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during discussions on institutional births. Women also reiterated that methods such as uterine devices were also forbidden since they were invasive methods but that they knew of no prohibition against contraceptive pills. Using birth-control pills, however, was not always a practical solution to the risk of pregnancy, since it was difficult to establish a regular supply of pills, which would require visits to the PHC, where in any case medicines were not always available. In the case of Hindu women, the younger women spoke of their wish to limit births but said that the pressures from older women in the family, especially mothers-in-law, did not allow them to seek out sterilizations. Sometimes women who had already borne three children by the time they were twenty-two or twenty-three said that “ghar mein operation karane se mana karte hain—family members forbid us to seek operations.” The ambiguous ways in which women expressed the desire to limit births does not make it easy to make any straightforward analysis of how to read the various statements about operations and “cuts.” Nevertheless, in some cases it seems that women who had three or more live children sought hospital births with an understanding that it might be possible to find ways of halting further births. For instance, in a focus group discussion in Delhi, a woman related how she had got a copper T inserted after she lost her baby during a complicated delivery in a hospital. She had three older children who were all born at home, but her last two pregnancies ended in a very late miscarriage and stillbirth, respectively—because, she felt, she did not receive timely attention even in the emergency room. She experienced overwhelming grief and did not want any further pregnancies, but pressure from her mother-in-law made it difficult for her to seek out contraception in a family-planning clinic. She said that the hospital could not have performed an “operation” right then—but she had gone back for a checkup a month later and taken the opportunity to get contraception. The copper T was uncomfortable, yet she did not want to risk another pregnancy. If given the opportunity, she would have preferred to get herself sterilized, but in the face of opposition from her mother-in-law she could not get her husband’s cooperation to arrange for an operation. Although women were somewhat reluctant to speak about their desire for contraceptives, women who had already given birth to three or four children wanted to stop further pregnancies both because of their desire for smaller families and because of the risks further pregnancies posed to their health and their lives. The availability of ASHA workers had opened up the opportunity for negotiating the otherwise intimidating space of medical institutions. The relation between overt and subtle coercion by government medical institutions and the freedom that many women seem to want from frequent pregnancies needs further exploration. There is clearly a bundling of goals in which the overt goal of increasing institutional births becomes tied to the covert goal of meeting targets for sterilization. Many women we talked to who had opted for institutional birth nevertheless left the PHC or CHC within a few hours of giving birth, riding pillion on the husband’s motorbike with the newborn in their laps rather than staying the mandatory forty-eight hours in which their postdelivery status and the

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baby could be monitored. The explicit reason they gave for this action was that it was difficult to entertain relatives who would come visiting when they were in the PHC or CHC. It seems likely that they might be avoiding a discussion on sterilization or contraceptive advice. But in the light of statements by ANMs that they were able to meet their targets for sterilization quite easily, it seems likely that the desire for controlling pain during childbirth also makes the woman available as a body to be targeted for contraceptive advice and even sterilization. Instead of assuming, then, that the rates of sterilization are a result of subtle coercion by state functionaries, it might be important to think about how the medical space might offer an opportunity to negotiate norms that younger women feel are being imposed on them by older women.

T H E M AT E R N A L B O DY

The dominant health-policy narrative of how to reduce maternal mortality in India has shifted from thinking of the training of dais and the re-forming of traditional practices of childbirth as a major pivot for maternal health policy to thinking of institutional births as the major policy tool for this purpose. As this discourse shifted, so did the representation of the dai from being a major ally to the major obstacle in realizing the goal of reducing maternal mortality. The strategy of relying on traditional birth attendants was already under pressure in 2001 when a review of evidence showed that it had little direct effect on maternal mortality (De Brouwere and Van Lerberghe 2001). Longitudinal data from Bangladesh suggests that maternal mortality declined despite the low level of skilled attendance at births partly because of the significant decline in mortality from abortions and partly because of emergency care. Thus any firm conclusion about the association between the increase in institutional births and the decrease in maternal mortality cannot be sustained. Nevertheless, this has not stopped health officials from blaming the dais for creating obstructions to the fulfillment of this policy. Anthropological work on dais argued that the work of traditional midwives was considered so degraded and polluting that there was little scope for improving maternal care through training them since training did not improve their social status (P. Jeffery et al. 1987). On the opposite side was a passionate defense of the knowledge and practices of dais by feminists such as Janet Chawla (2006), who felt that the knowledge the dai commanded had the status of subjugated knowledge and that there should be a system of referrals so that they could get help in the case of complicated births, but that normal birth should take place within the domestic space in a comforting and joyful atmosphere. At issue for Chawla has been the question of restoring the joyful aspect of pregnancy and childbirth rather than treating it as purely a medical condition. We think Chawla is right: while child birth is thought to be polluting, requiring the specialized services of lower castes, it is also seen as an auspicious event, full of joy and celebration. The texts on ritual make a distinction between the auspicious pollution (shubher ashauacha) of childbirth and the inauspicious pollution of death (Das [1976]

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2012). As Vidya Rao (2006) demonstrates, there is a specialized vocabulary in the birth songs sung on the occasion of childbirth that gives expression and collective recognition to the experiences of the mother. These songs bring to life the mixed experience of pain and joy. Through the use of metaphors, the placenta is transformed into the locus stalk, which has nourished the child, who is seen as the flower that will bloom in the welcoming arms of the women. Yet if one thinks of the high rates of infant mortality and the wounding experiences of loss, one cannot simply endorse a nostalgic view of childbirth under these conditions (Pinto 2008). The diversity of expressions through which childbirth is represented in these songs and experienced by women has its institutional counterpart in the dispersal of specialized functions around the management of birth. One of the most interesting interventions in this debate is that made by Sarah Pinto (2006), who points out that although the dai may or may not conduct the actual birth, it is her responsibility to cut the cord and deliver the placenta (but see R. Jeffery et al. 1984). Chawla (2006) points out that the care for the placenta is seen as the cord cutter’s way of caring for the child whose life was once dependent upon this placenta. Childbirth is located then in a series of relations and does not fall in the domain of any single expert: actual birth may be conducted by a dai or by older women; the cord is cut by a specialist whose task is to give proper care to the placenta and see that it is buried appropriately; the dai may be called in to give massages to the new mother and to wash the birth clothes to remove the pollution; the barber’s wife, to clip the woman’s nails at the end of the period of pollution; the priest, to perform the ritual of welcoming the child to the world of wider kin and ancestors; and kinswomen, to come and sing songs celebrating childbirth. Clearly the medical model abbreviates or does away with this social model in which birth is encompassed within a range of ritual, ceremonial, and medical events. Yet it is the case that in devising their own therapeutic models, women and families seem to disaggregate the process into different nodal points. What is seen as continuous in the medical model—ANC, delivery, postpartum management, and care of the infant—gets disaggregated in ways that can allow women to gain some control over what is happening to their bodies. Thus they have incorporated some parts of the medical model and combined them with other practices that seem to make more sense within the constraints of their social situation. We might characterize these combinations as the making of individual therapeutic strategies on the model of a bricolage that takes the newly available provisions in the public sector together with what is available in local-practitioner markets and within the sphere of the domestic, and then crafts a mode of action that brings the social model of healing and the medical model into alignment with each other. Thus ASHA becomes the source of information and for negotiating the medical and bureaucratic spaces; the ANM becomes the resource for the anti-tetanus injection and to access iron pills for free; the PHC or the CHC as these are accessed through the agency of ASHA are spaces where the pain of childbirth can be medically managed and cash claimed; the husband’s motorcycle is a means of escape from the medical spaces before

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the mandatory forty-eight hours. Families will often choose where to go for delivery according to the reputation of the ANM and will sometimes travel to a more distant CHC because a reputed ANM is located there. They also use the practitioners in the local markets for any other illnesses that might crop up during the pregnancy or after birth. Although safe delivery is a shared goal between the families and the medical system, the maternal body is a much more complex entity in the social world than it is in the medical imaginary. In the introduction to this chapter we pointed out that while new reproductive technologies are seen to raise profound issues about the conjoining of life and death, the ordinary tragedies of maternal and infant mortality raise an equally profound but different set of issues. Here death is present in the very crevices of everyday life: in the figures of the woman who wants to limit future births because grief of miscarriages and stillbirths is overwhelming; in the desire for technologies that would make the pain of childbirth easier to bear; in the fear and apprehension that something might go wrong during a delivery at the hospital or that the dai might realize too late that this particular delivery is beyond her competence. What we encounter here is not dramatic choices regarding which embryos to save and which to destroy but rather the interweaving of the social model and the medical model in such a way that death can be held at bay. For that very reason it is a challenge to describe the manifold desires and fears, the braiding of hope and anxiety, that arise out of the feeling that even slight changes, such as the addition of a new cadre of ASHA workers, might have consequences not intended by the designers of the policy. In the final analysis the issue is not simply that of increasing institutional births but making sure that preferences of women can be respected in a way that provides for safe and joyful motherhood.

N OT E S

The following authors belonging to the Stanford–ISERDD Study Collective contributed to the fieldwork, analysis, and writing of the report: Bina Choi, Roopa Das, Mita Deshpande, Charu Nanda, Meera Ragavan, Himabindu Reddy, Roshan Shankar, Rajan Singh, Geeta, and Purshottam. The group was collectively supervised by Veena Das, Nomita Divi, and Grant Miller. Veena Das took primary responsibility for the final writing. The authors gratefully acknowledge the generous help provided by Dr. Rajiv Tandon and Dr. Anuradha Jain from Save the Children India in helping to negotiate the field visits and for their comments. Finally, many thanks to the villagers, and to the health workers in the PHCs and the CHCs, who answered out questions ungrudgingly and offered us hospitality. 1. The wide variation in the success reported by different states in India seems to pose important questions for future research. Thus, for instance, Tamil Nadu reports a dramatic increase in institutional births (97.7% in 2007–8) and a reduction of maternal mortality (MMR down from 380 in 1983 to 90 in 2007). Based on an analysis of secondary materials and a case study of one PHC (primary health center), Padmanabhan, Raman, and Mavalankar (2009) conclude that supply-side interventions—such as a state-level system of surveillance and audit

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of maternal deaths as well as near misses; the provision of staff nurses to conduct births at PHCs and round-the-clock facilities for emergency obstetric care on a twenty-four-hour basis; and the provision of ambulances to transport pregnant women from rural areas for delivery to PHCs or hospitals—have contributed to this dramatic success.) 2. Rahmuddin’s matter-of-fact statement should alert us to the fact that cultural explanations are subject to constant revision, though they are not infinitely elastic. 3. See Hollen 2003 for a discussion of the use of such technologies as a way of managing medicalized birth. See Diniz and Chaccham 2004 for a documentation of the overuse of cesareans and episiotomy in Brazil, and Wagner 1999 for a critique of the frequent use of episiotomy. In our experience women did not talk openly about “the cut,” though as we show, they alluded to it obliquely. There was, however, widespread support for receiving oxytocin for increasing contractions, as it was seen to contribute to quick delivery. One year after this fieldwork was conducted, the ISERDD team found that in the low-income areas in Delhi and in one urban village they visited in July 2014, some reported that even trained dais were beginning to call in a provider at the time of delivery to administer this injection. As one dai told the team, “Earlier, children could be born without injections, but now they do not come out till an injection is administered to the mother.”

REFERENCES

Chawla, Janet. 2006. Introduction to Birth and Birth Givers: The Power behind the Shame, edited by Janet Chawla, 1–25. Delhi: Harnanad Publications. Das, Veena. (1976) 2012. Structure and Cognition: Aspects of Hindu Caste and Ritual. Delhi: Oxford University Press. De Brouwere, Vincent, and Win Van Lerberghe. 2001. Safe Motherhood Strategies: A Review of the Evidence. Antwerp: Studies in Health Studies Organization and Policy. Diniz, Simone G., and Alessandra S. Chacham. 2004. “ ‘The Cut Above’ and ‘the Cut Below’: The Abuse of Caesareans and Episiotomy in São Paulo, Brazil.” Reproductive Health Matters 12 (23): 100–110. Foucault, Michel. 2000. “Governmentality.” In Power: Essential Works of Foucault 1954–1984, vol. 3, edited by James D. Fabion, translated by Robert Hurley, 201–22. New York: New Press. Goodfellow, Aaron. 2015. “Pedagogies of the Clinic: Learning to Live (Again and Again).” In Wording the World: Veena Das and Scenes of Inheritance, edited by Roma Chatterji, 38–54. New York: Fordham University Press. Gupta, Sanjeev K., D. K. Pal, R. Tiwari, R. Garg, A. Shrivastava, R. Sarawagi, R. Patil, et al. 2012. “Impact of Janani Suraksha Yojana on Institutional Delivery Rate and Maternal Morbidity and Mortality: An Observational Study in India.” Journal of Health, Population and Nutrition 30 (4): 464–71. Hollen, Cecilia Van. 2003. “Invoking Vali: Painful Technologies of Modern Birth in South India.” Medical Anthropology Quarterly 17 (1): 49–77. Jeffery, Patricia, Roger Jeffery, and Andrew Lyon. 1987. “Contaminating States: Midwifery, Childbearing and the State in Rural North India.” In Women, State and Ideology: Studies from Africa and Asia, edited by Haleh Afshar, 152–69. London: Macmillan.

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Jeffery, Roger, Patricia Jeffery, and Andrew Lyon. 1984. “Only Cord-Cutters? Midwifery and Childbirth in Rural North India.” Social Action 34 (3): 229–41. Lim, Stephen S., Lalit Dandona, Joseph A. Hoisington, Spencer L. James, Margaret C. Hogan, and Emmanuela Gakidou. 2010. “India’s Janani Suraksha Yojana, a Conditional Cash Transfer Programme to Increase Births in Health Facilities: An Impact Evaluation.” Lancet 375 (9730): 2009–23. Lovell, A. M., S. Pandolfo, V. Das, and S. Laugier. 2013. Face aux désastres: Une conversation à quatre voix sur le care, la folie et les grandes détresses collectives. Montreuil-sous-Bois, France: Ithaque. Mosse, David. 2005. Cultivating Development: An Ethnography of Aid Policy and Practice. London: Pluto Press. NRHM. 2013. National Rural Health Mission: Meeting People’s Health Needs in Rural Areas, Framework for Implementation 2005–2012. Delhi: Ministry of Health and Family Welfare. Padmanabhan, P., Parvathy Sankara Raman, and Dileep V. Mavalankar. 2009. “Innovations and Challenges in Reducing Maternal Mortality in Tamil Nadu, India.” Journal of Health, Population and Nutrition 27 (2): 202- 15. Pinto, Sarah. 2006. “Division of Labour: Rethinking the ‘Midwife’ in Rural Uttar Pradesh.” In Birth and Birth Givers: The Power behind the Shame, edited by Janet Chawla, 203–38. Delhi: Harnanad Publications. ———. 2008. “Consuming Grief: Infant Death in the Postcolonial Time of Intervention.” In Postcolonial Disorders, edited by Mary-Jo DelVecchio Good, Sandra T. Hyde, Sarah Pinto, and Byron J. Good, 359–76. Berkeley: University of California Press. Randive, Bharat, Vishal Diwan, and Ayesha De Costa. 2013. “India’s Conditional Cash Transfer Programmes (the JSY) to Promote Institutional Birth: Is There an Association between Institutional Birth Proportion and Maternal Mortality?” PLOS One 8 (6): e67452. Rao, Vidya. 2006. “Singing the Female Body: An Exploration of Sohar Songs.” In Birth and Birth Givers: The Power behind the Shame, edited by Janet Chawla, 80–122. Delhi: Harnanad Publications. Steinbrook, Robert. 2007. “HIV in India—a Complex Epidemic.” New England Journal of Medicine 356 (11): 1089–93. UN Interagency Group for Child Mortality Estimates. 2013. Levels and Trends for Child Mortality. New York: United Nations Publications. Vicziany, Marika. 1982a. “Coercion in a Soft State: The Family-Planning Program of India: Part 1: The Myth of Voluntarism.” Pacific Affairs 55, no. 3 (Autumn): 373–402. ———. 1982b. “Coercion in a Soft State: The Family-Planning Program of India: Part 2: The Sources of Coercion.” Pacific Affairs 55, no. 4 (Winter): 557–92. Vora, Kranti S., Dileep V. Mavalankar, K. V. Ramani, Mudita Upadhyaya, Bharati Sharma, Sharad Iyengar, Vikram Gupta, and Kirti Iyengar. 2009. “Maternal Health Situation in India: A Case Study.” Journal of Health, Population and Nutrition 27 (2): 184–201. Wagner, Marsden. 1999. “Episiotomy: A Form of Genital Mutilation.” Lancet 353 (9168): 1977–78. World Bank. 2012. Word Development Report 2012: Gender Equality and Development. Washington: World Bank Publications.

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2 CONCEIVING LIFE AND DEATH Stem Cell Technologies and Assisted Conception in India and the Middle East

Aditya Bharadwaj and Marcia C. Inhorn

Emerging biotechnologies are radically readjusting the meaning of life and death. In the biotechnological terrain, the seemingly opposing ends of the life course emerge curiously “conjoined” as the very process of conceiving and supporting life becomes imaginable as always pregnant with death. Life mediated by biotechnologies has a fraught and continually evolving ontological status. Following Canguilhem (1989), biotechnological “life” can be imagined as a constant but only partially successful attempt at resisting death. The biotechnological trickery lies in cheating death while unwittingly turning living into resisting the inevitable. To live in the biotechnological mode is to continually negotiate with death—to define and interpret it. As Margaret Lock (2002) so eloquently shows, death is not self-evident; the space between life and death is constructed, complex, and open to dispute. In a similar vein, notions of “good death” (Green 2008), mythic constructs of “sudden death” (Timmermans 1999), and assertions of the “right to die” (Richards 2012) occupy an ambivalent cultural space around the globe, as biotechnological mediations perform the double-jointed task of both resisting death and empowering life. While anthropology has done much to deepen our understanding of “beginnings and ends of life” (Kaufman and Morgan 2005), the life-and-death questions stalking biotechnologically assisted forms of life have received less critical and cross-cultural attention. This is especially true if we shift our ethnographic gaze from biotechnological interpolations into macro-anatomical forms (Waldby 2002) to conceptions about life and death at cellular, microscopic levels (Landecker 2003). As anthropology grapples with

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life and death on the threshold of human tissue and molecular intricacies, it is perhaps timely to revisit not just life but death itself as forever emergent. In other words, if life in late modernity is outrunning the pedagogies in which we have been trained (Fischer 2003), death ought to compel a similar reimagining (Franklin and Lock 2003). In this chapter, we turn our attention to two of the most powerful biotechnologies of life: stem cell technologies and assisted conception. We argue that in order to make, gestate, and support life, these technologies are in fact replete with “little deaths.” We are not suggesting that some deaths are “little” because they are not devastating or are in some sense insignificant. On the contrary, our intention is to show how both temporality and scale are implicated in the “early ends” of technologically mediated life, and how these “early endings”—having so far received little analytical attention—affect the lives of others. In so doing, we also wish to show how the experience of early life and death is burdened by the bioethical and now increasingly bureaucratically expedient question, When does life begin? Not surprisingly, then, logics structuring the governance of biotechnologies of life around the globe seldom acknowledge or account for the experience of little deaths embedded in “sensibilities populating the everyday” (Das 2012). It is essential to bear in mind that little deaths are not so much about personhood imputed, assumed, or ascribed as they are about persons and institutions directly or indirectly implicated in biotechnologically mediated life-and-death conundrums. Little deaths in the biotechnological mode can be, ironically, “life altering.” As we hope this chapter will show, they can impact and shape conceptions about loss and premature endings as well as regeneration and perpetuation. Drawing upon our ethnographic immersions into the inextricably linked local moral worlds of stem cell generation and assisted conception in India and the Muslim Middle East, our argument traces five main intersections of life and “little deaths”: (1) the creation and early loss of the “elusive” embryos created in in vitro fertilization (IVF) labs; (2) the altruistic, life-giving donation of embryos that are then “destroyed” for the purposes of stem cell generation; (3) the attempts to prolong the lives of the dying through human-embryo-generated therapeutic stem cells; (4) the calculated “deaths” of excess fetuses created through assisted conception; and (5) the unintended deaths of lives brought into existence through IVF and related biotechnologies. Although the moral and ontological meanings associated with these life/death intersections are multiple and prone to mutation, they nevertheless remain culturally specific, as illustrated through ethnographic vignettes from India and the Arab world.

A S S I S T E D, D E S I S T E D

From assisted conception to embryonic stem cell generation, the embryonic form has emerged as one of the key ingredients in the biomedicalization of the human life course (Clarke et al. 2010). Stem cell research and clinical application in India, for example, has located the human embryonic form on the intersection of ethical, legislative, and clinical

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deliberations. In India today, the figure of “assisted” (created) and “desisted” (destroyed) embryonic forms has become a prominent signifier of biotechnologically assisted life. The biotechnology of embryonic stem cells empowers forces of both life and death, creation and destruction, to work in tandem to assist and support life. While this seemingly paradoxical tension has globally become the subject matter of intense bioethical deliberations and adjudications, Hindu philosophy and cosmology have for millennia accommodated this irony as the underlying force animating the procreative and regenerative capacity of the universe. Like Shiva, the Hindu deity of creation and destruction, belief in life and death symbiosis along with overt expressions of religiosity continue to populate everyday ethics and theodicies, which are produced in India in response to biotechnological interventions into the (dis)orderly flow of life (Bharadwaj 2005; 2009). Whereas the Indian story of assisted conception is as old as the history of IVF itself (Bharadwaj 2002), more recently the abundant availability of embryos as “surplus” corollaries of IVF procedures has fueled unprecedented interest in stem cell research and therapeutics. These scientific developments by necessity dictate the creation and destruction of embryos to generate research-worthy stem lines and therapeutic applications. The life/death, creation/destruction symbiosis is being pulled into the sphere of emerging bureaucratic and governance protocols in India. These moves are producing significant displacement and ejection of innovative theodicies and nuanced interpretations shaping clinical, scientific, and patient perspectives on biotechnologies. In large part, proposed legislative framings of these developments are drawing on a genre of regulatory enunciations that seek cross-cultural standardization of the human embryonic form as an ethically fraught entity (Bharadwaj 2005, 2009). Although the genealogy of these developments can be traced back to the emergence of “right-to-life” movements in the Euro-American landscape, the stem cell–specific history of these developments in India, indeed as in Euro-America, is relatively recent. On August 9, 2001, U.S. President George W. Bush allowed federal funding for embryonic stem cell research on those cells already in existence. Globally, only sixty-four lines could meet this criterion. Of these, ten were in India. Shortly after the presidential decree marked some embryos as “destroyed” and thus usable for stem cell research, while others still possessed the “right to life,” the U.S. National Institutes of Health announced that Reliance Life Sciences and the National Centre for Biological Sciences in India would be among ten of the institutions worldwide receiving federal funding for stem cell research. While surplus “American embryos” were now declared “living but orphaned,” and thus “thawable for adoption” by the Nightlight Christian Adoption–sponsored Snowflakes Program (Ganchoff 2004, 765–66), Indian laboratories could be federally funded to “destroy” embryos in order to generate viable stem cell lines. In India, there is no consensus on the moral status of the human embryo. Different philosophical and religious persuasions continue to define and debate life in an eclectic and open-ended way (Bharadwaj 2005). Nevertheless, the U.S. presidential decree of 2001 proved to be a significant watershed moment. In a deft preemptive move, largely

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influenced by the Euro-American ethical and governance protocols, the Indian state began to enact guidelines that would frame “life” in opposition to “death”—very much counter to the aforementioned symbiotic composite of life and death populating the mundane, everyday engagements of Indians with questions of living and dying (Indian Council of Medical Research 2006). The task of ensuring the provenance and strictest ethical scrutiny of embryonic entities became not so much a local cultural response to the question of life and death—that is, how one enables the other—as it did a strategic investment in “future global markets, potential scientific collaborators, and probable international lay consumers of embryonic entities and their ethical/moral thresholds” (Bharadwaj 2009, 247).

REDUCTION, ENHANCEMENT

The biotechnology of stem cells drawn from embryonic sources is embroiled in protracted ethical and moral panics around the globe. This disquiet has come to rest on profound concerns over the ways in which advances in research may precipitate an insatiable demand for the creation and destruction of human embryos. The fear of a limitless demand for “embryonic death” in the service of “life-supporting” therapeutic interventions has polarized public and political opinion for and against such interventions in the United States and beyond. Recent therapeutic developments in India, however, challenge this view, both at the level of established scientific practice and in prevailing public moral uncertainty. The ethnographic focus on a clinic in New Delhi offers a compelling illustration of the therapeutic application of human embryonic stem cells, despite domestic and international regulatory unease at the rapid translation from bench to bedside (Jayaraman 2005). Since the year 2000, a major New Delhi clinic has offered human embryonic stem cell therapies for a range of disorders such as diabetes, multiple sclerosis, Parkinson’s disease, cardiac conditions, spinal-cord injuries, and Lyme disease. The stem cells at the clinic are all derived from a single, left-over embryo from an IVF cycle. With informed consent from the couple, the embryo was put through a series of tests, including the medical and genetic history of the donors, to determine the viability of any resulting stem cell lines. The clinical director controversially claims that, theoretically, one human embryo can generate enough cell lines to treat the entire human population. Thus for nearly ten years a single embryo has purportedly supplied stem cells for a diverse range of conditions for more than one thousand patients. This suggestion puts a very different perspective not only on the prevailing “panics and ethics” surrounding the use of human embryos for stem cell generation (Bharadwaj 2012), but also on the very notion of “supplementarity”: an ability of individuals or populations to constitute their longevity through access to the organic forms of other persons (Cohen 2010, 253–54; 2003). If, indeed, a single embryo can divide into perpetuity to supply cells for therapeutic use, then a one-off “death” of “little” magnitude could rapidly

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transform into a one-off “sacrifice” imbued with the potential to rewrite the rules of supplementarity. Additionally, while this unwittingly turns the conception story of a therapeutic intervention into a totemic sacrifice for the collective good, it nevertheless carries the potential to assuage globally dispersed fears of many millions of “little embryonic deaths.” These developments are posed as probabilities in the projective mode, because this radical new technique of generating an unlimited supply of cells from a single human embryo remains hotly contested and outside of the consensible limits of peer-reviewed science (Bharadwaj 2013). The developmental trajectory and enhancement of cells to treat the many intractable and disabling conditions they seek to cure at this clinical facility also offers a fascinating insight into the life/death coproduction in enhancing therapeutic outcomes. From chronic spinal cord injury patients to Lyme sufferers, the dramatic reversal and in some cases enhancement to “near normal” functioning (Bharadwaj 2013) amply illustrates how “transfer of young, pluripotent human cells to old, infirm human bodies disrupts linear life-cycle narratives” (Kaufman and Morgan 2005, 320). Thus, with biotechnologically mediated “little deaths,” the very act of ending one symbol of life (embryo) can rebirth another (stem cell), transforming termination into therapeutic “rebirths” of those with life-threatening conditions.

T E R M I N AT I O N , C O N T I N U AT I O N

However, terminations and continuations achieved through biotechnological mediation are not entirely pain free. These endings and potential new beginnings can be life altering, and not just in a therapeutic sense. The notion of death, even at the cellular level, is saturated with meaning, affect, bonds of relatedness, and attachment. These bonds are far removed from the political rhetoric that attributes potentiality to shards of biogenetic substance. The affect and attachments at work here are deeply embedded in intimate biographies, personal struggles, and shared pain. Rekha (a pseudonym), who is a potential embryo donor in a New Delhi fertility clinic, is one among many whose deeply personal, life-affirming stories are produced in the face of little deaths. Ever since the premature birth of her son some eight years before, Rekha has suffered from secondary infertility. Soon after her son’s birth, Rekha became pregnant, but she and her husband opted to undergo what she called a “medical termination of pregnancy” (MTP). Looking after their premature baby had become overwhelming, and thus an abortion seemed like a sensible solution. However, much to Rekha’s dismay, all their subsequent attempts at pregnancy failed. Rekha was riddled with guilt and even contemplated her secondary infertility as divine retribution for “killing [her] unborn child.” At the time of her interview with the first author (Bharadwaj), Rekha was undergoing IVF in the hope of providing her son with a sibling. She had also been asked by the clinical director to “donate” her excess embryos for stem cell research. Reflecting on this question, she continually reiterated in her interview how embryo donation—if done for a “cause” such

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as medical research—might benefit others in due course. She was quick to point out that people who have had the time to “think through” and thus feel “genuinely committed” to making such a contribution should contemplate giving up their embryos for research. As she spoke, she couldn’t help but add that making up one’s mind “for or against” such research was still difficult, since ultimately it is a “thin dividing line.” Indeed, Rekha appeared deeply conflicted, her hands defensively folded against her chest, her voice wavering and uncertain, and her facial expression deeply somber. After a long, thoughtful silence she said, “In the interest of science, it’s OK. After all, some sacrifices were made by some people for research and the advances I benefit from right now. Some sacrifices were made.” She added, Going through this process, you think differently. If I had naturally conceived a couple of children, I would not think about it, but I feel I am reaping the benefits of someone’s sacrifices. You realize the value of something. . . . I now view an embryo as a child. If I had thought like this before I would not have gone for MTP. So, going through this difficulty [i.e., secondary infertility], you feel differently. Until I went through this process, I viewed it differently. But when it actually hits you, you realize how much of a difference it makes to your life. Otherwise, it’s drawing-room talk. Only when it hurts [do] you realize how much it hurts.

In Rekha’s pursuit of conception, her worldview was riddled by guilt and frustration. The pregnancy termination stood out as a thorny subtext in her reproductive biography. She regretted the decision taken all those years before as she struggled to look after her “preemie baby.” However, this decision and its subsequent biographical reverberations served to forge an empathetic connection with her “terminated” embryo, to the point that she now saw in the embryonic form a potential sibling for her son. Her worldview was shaped not by some rhetorical investment in bioethical, religious, or bureaucratic attempts at ascribing sentient potentiality to an embryo, but rather by a deeply personal struggle with secondary infertility and the guilt of believing that her decision to opt for termination of an earlier pregnancy was now responsible for her current predicament. Rekha used the word chilling to describe the thought of giving up an embryo for research. But she also felt that sacrifices had to be made for science. Throughout her interview, she oscillated between the old Rekha, who had opted for the pregnancy termination, and the new Rekha, who was shaped by pain, hurt, and regret. Rekha’s conflict is not an isolated case. There is ample evidence to suggest that the use of fetal tissue, as opposed to IVF-conceived embryos, for the purposes of stem cell extraction can disturb boundaries between human/embryo and life/death (Bharadwaj 2012). For example, in her paper on her research project in the United Kingdom, Pfeiffer (2008) argues that what made stem cell research involving fetal tissue particularly troubling for women in her study was the “association with renewal, regeneration, and immortality,” which reinstated and developed the “fetus’ physical existence and social biography, the very thing abortion is meant to eliminate” (2008, 2544; 2009).

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Indeed, Rekha’s story shows how both human embryos and human fetuses become a source of conflict when mediated by painful personal experiences of their loss. Rekha’s “termination” of a fetus is difficult for her to assimilate when she is eventually asked to “give up” embryos in the service of assisting life. These little deaths are inextricably intertwined in her life story, and are difficult for her to untangle. The mutual imbrication of life and death is, as we argue, a prominent feature of assisted conception in general, even though the “life” side of these “hope technologies” (Franklin 1997) is what is valorized within assisted-conception discourses. What remains hidden in these life-enabling discourses are the many “little deaths” involved in the pursuit of life.1

C O N C E P T I O N , F R U S T R AT I O N

Indeed, assisted conception is replete with death. Although worldwide the IVF industry likes to boast of its success—with five million “miracle babies” now born around the globe (Franklin 2012)—the truth is that millions and millions of IVF conceptions end in “little deaths”: deaths of gametes (sperm and eggs), deaths of embryos, deaths of fetuses, and deaths of IVF babies themselves. Even in the best IVF clinics in the world, IVF success rates are never more than about 33 percent per cycle (Gnoth et al. 2011). But this statistic entails a major erasure: 40 percent of IVF cycles may lead to conception in the best clinics, but many of these conceptions do not yield “take-home” babies, whose existence remains quite elusive for the majority of infertile couples. For many infertile couples, assisted conception is replete with loss, which must be absorbed, made sense of, rationalized, and grieved by infertile couples—husbands as well as wives. Although Rekha’s story bespeaks the heartache of female infertility, men, too, may be infertile, requiring them to face up to their own “defective sperm,” as well as to the considerable losses encountered by them as men and potential fathers who have pinned their hopes for offspring on the life-giving promise of assisted conception (Inhorn 2012). Until the early 1990s, the only known solution to male infertility was sperm donation, which, although practiced in the West (Becker 2002), is widely prohibited in most Muslim-majority countries (Inhorn and Tremayne 2012). In the Muslim communities of the Arab world and South Asia, most men refuse to consider sperm donation, equating it with mistaken paternity, genealogical confusion, and illicit sexuality (Inhorn 2004, 2006, 2012). Similarly, legal adoption as it is practiced in the West—where a child takes the adoptive parents’ surname, can legally inherit from them, and is treated “as if” he or she is a biological child—is prohibited in Islam for reasons of patrilineal purity and is rarely viewed as a tenable option among infertile Hindu couples as well (Bharadwaj 2003; Inhorn 2003). In the absence of sperm donation and child adoption, infertile men are left with few avenues to fatherhood. Given these prohibitions, the introduction of intracytoplasmic sperm injection (ICSI, pronounced “ik-see”)—which was introduced in Belgium in 1991 and which overcomes male infertility by using a man’s own sperm—was a watershed event, perhaps particularly

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within the Muslim world (Inhorn 2003, 2012). A variant of IVF, ICSI solves the problem of male infertility in a way that IVF cannot. With standard IVF, spermatozoa are removed from a man’s body through masturbation, and oocytes (eggs) are surgically removed from a woman’s ovaries following hormonal stimulation. Once these male and female gametes are retrieved, they are introduced to each other in a petri dish in an IVF laboratory, in the hopes of fertilization. However, “weak” sperm (i.e., low numbers, poor movement, misshapen) are poor fertilizers. Through their “micromanipulation” under a highpowered microscope, otherwise infertile sperm can be injected directly into human oocytes, effectively aiding fertilization. As long as one viable spermatozoon can be extracted from an infertile man’s body, it can be “ICSI-injected” into an oocyte, leading to the potential creation of a human embryo. With ICSI, then, otherwise “sterile” men can father biogenetic offspring. This includes azoospermic men, who produce no sperm in their ejaculate and must therefore have their testicles painfully aspirated or biopsied in the search for sperm. In short, ICSI gives even the most infertile men a chance of producing a “test-tube baby.” First introduced to the Muslim world in Egypt in 1994 (Inhorn 2003), ICSI has led to a virtual “coming out” of male infertility across the Middle East as men acknowledge their infertility and seek the ICSI solution (Inhorn 2012). The coming of this new “hope technology” (Franklin 1997) has repaired diminished masculinity in men who were once silently suffering from their infertility. Furthermore, ICSI is being used in the Middle East and elsewhere as the preferred assisted reproductive technology, effectively replacing its predecessor, IVF. Whereas IVF leaves fertilization up to chance, ICSI does not. Thus, ICSI provides a more guaranteed way of creating “the elusive embryo” (Becker 2000). With ICSI, then, human fertilization is increasingly aided and abetted by embryologists working in IVF laboratories around the world. As the “only hope” for most infertile men, especially those with serious infertility problems, ICSI has led to an immediate boom in demand for this technology across the Middle East—a demand that has never waned over nearly two decades. ICSI is by far the most common assisted reproductive technology now undertaken in the Middle East, and IVF clinics today are filled with ICSI-seeking men and their wives. For many of these men, the search for ICSI success is relentless. As one infertile Lebanese man stated, “I will try again and again and again. I will never lose hope.” Or, as another concluded, “I will try until I die.” However hopeful ICSI has been for Middle Eastern men—who suffer significantly higher rates of male infertility than their Euro-American counterparts (Inhorn 2012)2— ICSI has brought with it untold “little deaths.” Such little deaths are apparent in the story of Ibrahim (a pseudonym), a Palestinian man whose ardent desire for fatherhood has propelled him on a valiant and transnational quest for ICSI. Married for thirteen years, Ibrahim knew that he had a serious male infertility problem within the first year of marriage. “I did many tests,” he explained. “And still, the results turned out to be very bad.” Speaking to the second author (Inhorn), he then

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volunteered, “I have a copy of all my medical reports. I could show them to you on Sunday. Always, the semen count was four to five hundred thousand—very, very weak. And after one-half hour, everything died. There was fragmentation, also. “Our journey starts here,” Ibrahim continued, immediately launching into a story of thirteen failed ICSI attempts between 1995 and 2007. Most of these failed cycles were undertaken at “famous” clinics in Jordan, eventually making Ibrahim convinced to “stop searching in Arab countries.” A Palestinian friend in France made an appointment for Ibrahim and his wife, Nura, at an IVF clinic in Rouen. There, a chromosome test of Ibrahim’s sperm showed “fragmentation,” an indication of a chromosomal defect. Reviewing Ibrahim’s case, the French doctors told him bluntly, “We can’t do anything for you. And since you did ICSI more than nine to ten times, we cannot do it again, because the French rules say that we cannot do ICSI after four times.” They then suggested adoption, which shocked Ibrahim. “That’s fine for you,” Ibrahim told the French doctors. “But for us, as Muslims, we have a different tradition.” Demoralized but not destroyed, Ibrahim began his “research,” drawing upon his global network of relatives and acquaintances in the Palestinian diaspora. Fortunately, one of Ibrahim’s Palestinian friends in Los Angeles told him that he would be willing to help with the ICSI quest. Despite the difficulty of obtaining visas for travel to the post-9/11 United States, Ibrahim and Nura’s patience paid off. They were eventually allowed to seek medical care in America. There, they visited IVF centers in both Las Vegas and Los Angeles, agreeing that their best chances for ICSI success were at the University of California, Los Angeles, where, in the words of Ibrahim, a “master doctor” was in charge of the IVF clinic. For the first time in a decade of ICSI seeking, Ibrahim and Nura were offered preimplantation genetic diagnosis (PGD) to determine whether the couple’s ICSI embryos were carrying genetic defects, causing repeated ICSI failures. After verifying that PGD was religiously acceptable, Ibrahim and Nura agreed to PGD, and learned that eight of their twenty embryos were free from obvious genetic disease. As Ibrahim recalled, “He [the IVF doctor] told me something funny then. He said, ‘You have seven girls and one boy.’ I said, ‘I don’t give a damn shit for girls or boys, doctor! All I want is a child!’ So he returned back [to Nura’s uterus] three girls and one boy.” Ibrahim and Nura were scheduled to return to Dubai a week after the embryo transfer, and Ibrahim carefully changed their tickets from economy to business class so that Nura and the four ICSI embryos could “recline” in transit. After their return to Dubai, Nura underwent a pregnancy test—again negative. “My God, you cannot imagine how disappointed we were,” Ibrahim exclaimed. Calling the anthropologist by her first name, he continued: “In the U.S., Marcia, the trip cost me, with the travel, with everything, around thirty-five thousand dollars. Maybe I’ve spent more than one hundred thousand dollars in total for all of the [ICSI] trials. If somebody else had done this to Nura, I’m sure she couldn’t stand it. Sometimes, I come back home, and I find her crying. The environment here in the Arab countries—I mean, her sister is getting pregnant, my brother’s wife is

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getting pregnant, and sometimes they cannot stop it [their fertility]! Our family is not interfering, and it’s a love marriage. But sometimes, you know, I told her, ‘All of the problem is because of me, not you. It’s from my side. If you want, we can divorce.’ But she refused. She told me, ‘If there is going to be a baby, it has to come from you.’ ” Ibrahim said that he had contemplated going to Belgium, where ICSI was invented, but he had decided against it: “One doctor, he advised us to go to Belgium. But after we tried ICSI in America, I feel that what we do here [in the Middle East] is the same.” At the time of his interview, Ibrahim had placed his hopes in a private IVF clinic on the edge of Dubai. Although the IVF physician was a Hindu from India, Ibrahim found him “down-to-earth,” a physician who had still “found hope” in Ibrahim’s poor sperm profile, with its “dead and dying” sperm. Furthermore, the clinic employed an “embryo courier” service that could bring frozen embryos to Dubai from as far away as Los Angeles. Ibrahim was very excited about the prospect of transporting his three frozen embryos from the United States to the UAE, but was told by the courier that this would cost approximately twenty-five hundred dollars. Ibrahim laughed, “What the hell! After all I’ve paid, this is nothing!” Indeed, the three embryos were flown from Los Angeles in a cryopreservation tank that was hand-carried all the way from LAX through customs at Dubai International Airport. The embryos survived the journey, and with the help of the Indian doctor, Ibrahim’s and Nura’s “three girl embryos”—made in America and thawed in the UAE—were transferred into Nura’s uterus on the Emirati IVF clinic’s operating table. Unfortunately, however, on this fifteenth attempt at assisted conception, the three female embryos “died” in utero. Without successful implantation in Nura’s womb, Ibrahim’s dreams of fathering three little “American-made” Palestinian daughters vanished.

REDUCTION, DEMISE

In Ibrahim’s story, a “hope technology” encounters a “hopeless case.” In his thwarted attempt to bring forth life, Ibrahim is not alone. Many couples never conceive with IVF or ICSI, and among those who do, many of these conceptive quests do not lead to happy endings. Whereas Ibrahim’s story bespeaks the death of defective sperm, the culling of genetically marred embryos that are tested and then discarded, and the expiration of embryos already imagined as little girls, other conception stories move beyond the embryonic phase into the realm of dead fetuses. Indeed, the amount of fetal demise in the world of assisted conception is quite staggering. To illustrate the frequency of death at the beginning of life, an example from Beirut, Lebanon, seems appropriate. In 2003, the second author interviewed 220 Arab men (mostly Lebanese, Palestinians, and Syrians) about their experiences of infertility and assisted conception (Inhorn 2012). Of this group of 220, exactly 177 of them had already undertaken ICSI. Among these 177 men, there was a grand total of 434 ICSI attempts—274 among the 120 infertile men in the study, and 160 among the 100 fertile

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men with infertile wives. Yet, only eighteen ICSI children were born to these men, including thirteen ICSI sons and five ICSI daughters (including one set of female twins). Thus, the so-called take-home baby rate was astonishingly low—only 4 percent. This low rate of ICSI success increased considerably if all conceptions were considered, including current pregnancies (7), ectopic pregnancies (9), miscarriages and stillbirths (29), and neonatal deaths (4). In other words, 66 total conceptions took place after 434 ICSI attempts, for a pregnancy rate (as opposed to a “take-home” baby rate) of 29 percent. This makes the overall success of ICSI in this Middle Eastern population seem closer to global standards. Nonetheless, most of these ICSI conceptions ended in heartbreak and suffering, including life-threatening ectopic (tubal) pregnancies among men’s wives, many miscarriages, the stillbirth of seven sets of twins, and the deaths of three ICSI sons (including one with Down syndrome) and one ICSI daughter (due to a congenital heart defect). Recounting their fetal and neonatal losses, men often wiped tears from their eyes. Indeed, these “little deaths” did not feel “little” at all for the Arab men (and women) who had experienced them. Furthermore, one of the most “chilling”—to use Rekha’s term—forms of fetal demise in the world of assisted conception occurs when “excess” fetuses are intentionally aborted. So-called fetal reduction might be thought of as the “dirty little secret” of assisted conception. In many Western countries (although not the United States), legislation or professional bioethical guidelines prohibit the placement of more than two IVF or ICSI embryos back in a woman’s uterus. This is to prevent the possibility of a so-called highorder multiple pregnancy (HOMP) with triplets, quadruplets, or beyond. HOMPs are “risky” pregnancies—both to the mother and to the fetuses—given the higher likelihood of miscarriages, stillbirths, or the birth of very preterm, low-birth-weight babies. In other words, despite the purported “miracle of multiples,” such pregnancies often end in tragedy, with preterm birth, neonatal death, and maternal morbidity and even mortality. Among surviving high-order multiples, a lifetime of disability may await. Despite these risks of HOMP, clinics in many parts of the world attempt to boost their IVF and ICSI success rates by transferring three, four, five, or even six embryos back into a woman’s womb (Inhorn 2003). Although such multiple-embryo transfers increase the likelihood that a pregnancy will be achieved, that pregnancy may be literally “overloaded with fetuses”—fetuses that will compete for space and nourishment and lead to preterm labor. To prevent such an eventuality from occurring, women with HOMP are often encouraged to undergo “multifetal pregnancy reduction” (MFPR), also known as “selective reduction.” MFPR is basically a procedure of selective abortion, which, although clinically accepted as a “therapeutic” option in pregnancies with three, four, or more fetuses, remains highly controversial. Although several techniques of MFPR have been established, the most common is the injection of potassium chloride directly into the fetal heart through the woman’s abdomen at ten to twelve weeks of gestation. This injection stops the fetal heart from beating, and, depending on the number of fetuses and injections, may be used to “remove” one or more fetuses in a HOMP pregnancy. Most HOMP

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pregnancies are thus “reduced” to twins—a number that is often perceived as clinically manageable. The risk of MFPR is that “reduction” of some fetuses will jeopardize the others. Indeed, it is not uncommon for women to “lose” the entire pregnancy. Women who have undergone MFPR are often deeply shaken by the experience— equating this “reductive” technology with the “killing” of some of their precious IVF babies. For example, in 2007 the second author interviewed 125 infertile couples in the United Arab Emirates, five of whom had undergone MFPR outside of the country.3 For most, the experience was emotionally fraught—even in the absence of moral qualms about abortion. To take but one example, Aisha (a pseudonym), a thirty-year-old Indian Hindu woman currently living with her husband in Dubai, had undertaken IVF in the UAE, becoming pregnant with triplets. Her IVF physician recommended that she return to India for a reduction of the pregnancy to twins. Although abortion is legal in India, it is not allowed in the UAE, even for “therapeutic” purposes such as HOMP. Thus Aisha was forced to travel back to Bombay for the fetal-reduction procedure. However, Aisha’s case was complicated: among the triplets were identical twin fetuses sharing the same amniotic sac. The “reduction” of one twin led to the demise of the other, resulting in a singleton pregnancy. In an interview that focused almost solely on this experience, Aisha recounted the “trauma” of the fetal reduction: It was very, very traumatic. The doctors said there could be complications with twins in the same sac, and we definitely couldn’t keep triplets, which would be too much of a risk. And we didn’t want to gamble. But it is traumatic. After all of the [IVF] treatment, this baby does look . . . it’s precious, you know? I would have kept all three. That would have been totally fine, and my husband was the same as me. But the radiologist, and the gynecologist, and even my family doctor were all saying the same thing: “This is the best thing that you can do, and it’s better not to get all emotional.” But we were both very emotional about it. They did the reduction with one twin, but we lost both of them. They did the reduction on one, but we lost both. So now we’re down to one.

Aisha added quietly, “In the end, however, it was obviously our decision. I have lots of family there in Bombay, but I didn’t tell them. I decided to keep it quiet. They didn’t even know about the pregnancy. I don’t think I’d be in the mood to make any small talk after this, with people asking, ‘What did you do?’ We decided to do it quietly, so we wouldn’t have to describe the trauma, the inertia.” In Aisha’s story we see clearly how “beginnings” are also “endings” in the world of assisted conception. In Aisha’s case, “too much life” has taken hold in her womb, such that some of these lives had to be “taken” through fetal reduction. Although she stresses her own agency in the matter (“it was obviously our decision”), Aisha’s compliance with doctors’ demands means that she must “take lives”—lives that, to her as an infertile woman, are particularly precious. The experience—which she recounted to the anthropologist almost as a confession—leaves her doubtful and shaken. Aisha herself wanted

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to keep all three babies, as did her husband. As Hindu Indians, they were not morally opposed to abortion, and Aisha noted that abortion is widely available in India. However, Aisha’s own abortion of IVF fetuses leaves her traumatized—in a state of emotional “inertia.” “Choosing” to abort precious IVF fetuses is perhaps one of the most difficult decisions that infertile women like Aisha will ever make. Indeed, multifetal pregnancy reduction is perhaps the single clearest example of the morally ambiguous intersection of life and death in assisted conception, where hoped-for beginnings become aborted endings. Of all the “little deaths” of assisted conception, it is these “chosen” endings of “miracle babies” that are experienced as especially and acutely painful.

C O N C L U S I O N : L I T T L E D E AT H S , B I G L O S S E S

In the globalized late modernity of the new century, multiple, emergent meanings are ascribed to life conceived and maintained through biotechnological mediation. We can say that biotechnologies are reconceiving preconceived notions of life and death. Here we have attempted to trace the intersections of life and death at the nexus of new millennial biotechnologies. As the foregoing ethnographic vignettes have shown, in the globalized, biotechnological landscape, “little” deaths can generate “big,” life-altering losses. In producing stem cells and assisting conception, embryos are made, discarded, donated, implanted, and lost; fetuses are gestated, miscarried, and reduced; and “take-home babies” may or may not be brought to life through biotechnological means—and more often not. Although the “life-giving” qualities of therapeutic stem cells and assisted conceptive technologies are most often valorized, our chapter has focused on the many “little deaths” that normally elude our analytical gaze. As we have attempted to show through the stories of Rekha, Ibrahim, and Aisha, the “little deaths” of purportedly life-giving biotechnology may feel quite “big” to those who endure them. Through these stories, we have tried to show how the life-and-death dialectic is not only technologically determined and defined, but also bound up in everyday bonds of kinship, conjugality, child desire, and the search for therapeutic resolution. It is in these everyday, affect-saturated acts of both accommodating and resisting death that we can fleetingly glimpse the Janus-faced nature of the biotechnologies of human life. Such technologies entail life-enabling sacrifice; stalled births and stillbirths; the death of biogenetic tissues such as sperm; and destroyed embryos and fetuses as “killable” bare life. As anthropology tracks these emergent meanings, it becomes obvious that death, like life itself, remains emergent, context sensitive, and ambiguous. At a moment of twenty-first century history that holds great promise for future technological salvation, it seems quite salient to pause, to reflect, to urge caution, to critique (Bharadwaj and Glasner 2009; Inhorn 2012). In our own ethnographic worlds in India and the Middle East, we see the many “little deaths” that account for “big losses” in twenty-first-century biotechnological modes of being. In the final analysis, it seems

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imperative that we illuminate these local and global complexities, for the biotechnologies of human life—though life making and sustaining—have significant consequences for death itself.

N OT E S

1. Perhaps pregnancy loss and fetal demise are seen as exceptionally morbid topics, because, with few exceptions (Cecil 1996; Layne 2002), they are poorly covered in the anthropological literature. 2. In most Western IVF clinics, approximately half of all cases involve male infertility. In clinics in the Middle East, the percentages are much higher, ranging from 60 to 90 percent. Most of this male infertility is probably genetic in nature and related to high rates of consanguineous (cousin) marriage across the region. Indeed, in the Middle East male infertility tends to cluster in families (Inhorn 2012; Inhorn et al. 2009). 3. Fetal reduction, along with all forms of abortion, occupies a controversial legal status in many Muslim Middle Eastern countries, including the UAE. Thus most IVF physicians in the UAE will not perform fetal reduction and instead send their patients outside of the country, to India or the United Kingdom.

REFERENCES

Becker, Gay. 2000. The Elusive Embryo: How Women and Men Approach New Reproductive Technologies. Berkeley: University of California Press. ———. 2002. “Deciding Whether to Tell Children about Donor Insemination: An Unresolved Issue in the United States.” In Infertility around the Globe: New Thinking on Childlessness, Gender, and Reproductive Technologies, edited by M. C. Inhorn and F. van Balen, 119–33. Berkeley: University of California Press. Bharadwaj, Aditya. 2002. “Conception Politics: Medical Egos, Media Spotlights, and the Contest over Test-tube Firsts in India.” In Infertility around the Globe: New Thinking on Childlessness, Gender, and Reproductive Technologies, edited by M. C. Inhorn and F. van Balen, 315–33. Berkeley: University of California Press. ———. 2003. Why Adoption Is Not an Option in India: The Visibility of Infertility, the Secrecy of Donor Insemination, and Other Cultural Complexities.” Social Science and Medicine 56:1867–80. ———. 2005. “Cultures of Embryonic Stem Cell Research in India.” In Crossing Borders: Cultural, Religious and Political Differences Concerning Stem Cell Research, edited by Wolfgang Bender, Christine Hauskeller, and Alexandra Manzei, 325–42. Münster: Agenda Verlag. ———. 2009. “Assisted Life: The Neoliberal Moral Economy of Embryonic Stem Cells in India.” In Assisting Reproduction, Testing Genes: Global Encounters with New Biotechnologies, edited by Daphna Birenbaum-Carmeli and Marcia C. Inhorn, 239–57. New York: Berghahn Books. ———. 2012. “Enculturating Cells: Anthropology, Substance and Science of Stem Cells.” Annual Review of Anthropology 41:303–17.

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———. 2013. “Ethic of Consensibility, Subaltern Ethicality: The Clinical Application of Embryonic Stem Cells in India.” Biosocieties 8 (1): 25–40. Bharadwaj, Aditya, and Peter Glasner. 2009. Local Cells, Global Science: The Rise of Embryonic Stem Cell Research in India. London: Routledge. Canguilhem, George. 1989. The Normal and the Pathological. New York: Zone Books. Cecil, Rosanne, ed. 1996. Anthropology of Pregnancy Loss: Comparative Studies in Miscarriage, Stillbirth and Neo-natal Death. London: Berg. Clarke, Adele E., Laura Mamo, Jennifer Ruth Fosket, Jennifer R. Fishman, and Janet K. Shim, eds. 2010. Biomedicalization: Technoscience, Health, and Illness in the U.S. Durham, NC: Duke University Press. Cohen, Lawrence. 2003. “Operability.” In Anthropology in the Margins of the State, edited by Veena Das and Deborah Poole, 165–90. Santa Fe, NM: School of American Research Press. ———. 2010. “Ethical Publicity: On Transplant Victims, Wounded Communities, and the Moral Demands of Dreaming.” In Ethical Life in South Asia, edited by Anand Pandian and Daud Ali, 253–74. Bloomington and Indianapolis: Indiana University Press. Das, Veena. 2012. “Ordinary Ethics: The Perils and Pleasures of Everyday Life.” http:// johnshopkins.academia.edu/VeenaDas/Papers/1742853/Das_Ordinary_Ethics. Accessed 1 August 2012. Fischer, Michael J. 2003. Emergent Forms of Life and the Anthropological Voice. Durham, NC: Duke University Press Franklin, Sarah 1997. Embodied Progress: A Cultural Account of Assisted Conception. New York: Routledge. ———. 2012. “Five Million Miracle Babies Later: The Biocultural Legacies of IVF.” In Reproductive Technologies as Global Form: Ethnographies of Knowledge, Practice, and Transnational Encounters, edited by M. Knecht, M. Klotz, and S. Beck, 27–58. Frankfurt am Main: Campus Verlag. Franklin, Sarah, and Margaret Lock, eds. 2003. Remaking Life and Death: Toward an Anthropology of the Biosciences. Santa Fe, NM: School of American Research Press. Ganchoff, Chris. 2004. “Regenerating Movements: Embryonic Stem Cells and the Politics of Potentiality.” Sociology of Health and Illness 26 (6): 757–74. Gnoth, C., B. Maxrath, T. Skonieczny, K. Friol, E. Godehardt, and J. Tigges. 2011. “Final ART Success Rates: A 10 Years Survey.” Human Reproduction 26 (8): 2239–46. Green, James W. 2008. Beyond the Good Death: The Anthropology of Modern Dying. Philadelphia: University of Pennsylvanian Press. Indian Council of Medical Research. 2006. ICMR-DBT Guidelines for Stem Cell Research and Therapy. New Delhi: Indian Council of Medical Research and Department of Biotechnology. Inhorn, Marcia C. 2003. Local Babies, Global Science: Gender, Religion, and In Vitro Fertilization in Egypt. New York: Routledge. ———. 2004. “Middle Eastern Masculinities in the Age of New Reproductive Technologies: Male Infertility and Stigma in Egypt and Lebanon.” Medical Anthropology Quarterly 18 (2): 34–54. ———. 2006. “ ‘He Won’t Be My Son’: Middle Eastern Men’s Discourses of Adoption and Gamete Donation.” Medical Anthropology Quarterly 20 (1): 94–120.

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———. 2012. The New Arab Man: Emergent Masculinities, Technologies, and Islam in the Middle East. Princeton, NJ: Princeton University Press. Inhorn, Marcia C., Loulou Kobeissi, Zaher Nassar, Da’ad Lakkis, and Michael Hassan Fakih. 2009. “Consanguinity and Family Clustering of Male Infertility in Lebanon.” Fertility and Sterility 91 (4): 1104–9. Inhorn, Marcia C., and Soraya Tremayne, eds. 2012. Islam and Assisted Reproductive Technologies: Sunni and Shia Perspectives. New York: Berghahn. Jayaraman, K. S. 2005. “Indian Regulations Fail to Monitor Growing Stem-Cell Use in Clinics.” Nature 434:259. Kaufman, Sharon R., and Lynn M. Morgan. 2005. “The Anthropology of the Beginnings and Ends of Life.” Annual Review of Anthropology 34:317–41. Landecker, Hannah. 2003 “On Beginning and Ending with Apoptosis: Cell Death and Biomedicine.” In Remaking Life and Death: Toward an Anthropology of the Biosciences, edited by Sarah Franklin and Margaret Lock, 23–60. Santa Fe, NM: School of American Research Press. Layne, Linda. 2002 Motherhood Lost: A Feminist Account of Pregnancy Loss in America. New York: Routledge. Lock, Margaret. 2002. Twice Dead: Organ Transplants and Reinvention of Death. Berkeley: University of California Press. Pfeiffer, Naomi. 2008. “What British Women Say Matters to Them about Donating an Aborted Fetus to Stem Cell Research: A Focus Group Study.” Social Science and Medicine 66 (12): 2544–54. Richards, Naomi. 2012. “The Fight-to-Die: Older People and Death Activism.” International Journal of Aging and Later Life 7 (1): 7–32. Timmermans, Stefan. 1999. Sudden Death and the Myth of CPR. Philadelphia: Temple University Press. Waldby, Catherine. 2002. “Stem Cells, Tissue Cultures and the Production of Biovalue.” Health 6:305–23.

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3 THE PREGNANT HIJRA Laughter, Dead Babies, and Invaluable Love

Vaibhav Saria

Hijras are now easily recognizable figures of what has been referenced as the third gender. Over the past thirty years hijras have been studied quite intensively as legitimizing historical forms of queerness in India and concurrently a targeted site for HIV prevention and treatment.1 This chapter responds to Lawrence Cohen’s provocation to study the intersection of sexuality and poverty and the ways in which each comes to invoke the carnality of hijra bodies. More specifically, it tracks hijra aspirations toward reproduction, the future it promises even when granted mythically, and the narratives of constant failure that accompany that aspiration. I end by discussing the resolutions that are negotiated, which can be seen as an allegory for what is survivable.2 The ethnography that follows studies the forms of relating between hijras and their lovers in rural Orissa and offers some thoughts on the position of the hijra in a world that is seen to offer little by way of care or sustenance. It describes scenes from the everyday with the purpose of tracing the figure of the pregnant hijra and her baby to show how it is invoked by the hijras either to provoke laughter in the audience that inevitably gathers around them, or to flirt with and seduce men. The baby is also mentioned in myths and in the narratives that hijras weave about themselves. I claim that hijras can be understood as standing in a metonymic relationship between their local moral world, with its imagination of a future, and their desire for sex with men. By studying the different ways in which the baby figures in a variety of conversations, I hope to show how the baby signals anxieties found in the reproductive futurity that progeny offers, which hijras see as denied to them. These anxieties are inhabited not just

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by hijras but also by men and women who were hopeful for children and would seek the blessings of hijras to get rid of a childless existence. Hijras are invited to bless newly married couples with fertility and bless newborn babies with good fortune, reminding us that the child cannot be just the result of the complementarity of men and women’s biologies but invites and needs the participation of a whole host of actors and characters. The hijra is one such character, who is appended to reproductive futures through her own impossible desire and relatedly through her ability to curse people with infertility or bless them with fruition.

HIJRAS AND THEIR MEN: SEDUCTION AND PEDAGOGY

By evening, lots of young men would gather in my room in the bangle factory in Orissa, tired after a long day’s work. They would lounge about, chatting, living a bit dangerously, and would engage in prurient banter with Jaina, Azgari, and the other hijras who would come to visit me. Jaina would inevitably get tired of the conversations that would be a strange mash-up of religious diktats, singing, and flirting that did not result in sex, and would start pretending she was in labor. She would untie her lungi and tie it around her neck like women who tie their petticoats when they go bathing in public. She would then start writhing on my straw mat, squealing loudly about the pain she was in and grab her perfectly round belly. The boys would be extremely amused, and soon hysterical laughing and teasing would ensue: “Whose child is it, Jaina?” they would enquire, and Jaina would reply either by uttering the name of some boy she had recently had sex with or by gesturing toward one on whom she had harbored a crush for a while or, if he was absent, by saying, “The one whose child it is knows. Why don’t you go ask him?” Azgari would often join in the drama and begin giving advice: “Why aren’t you drinking water? The baby will come out swimming!” or “Shall I rub soap in your vagina so that that baby slips out?” The whole impromptu drama would end with everybody laughing hysterically. I want to study the implications of this comic performance, because, as we shall see, it relates to the various other ethnographic instances of conversations and discussions about the hijra’s body and the open question as to whether a hijra could give birth to children. I lived behind Azgari’s bicycle shop, and I would often go there to sit and have tea. During these times, she would often start talking loudly about how many boys came to fuck her the previous night.3 She would usually divulge this information in the presence of some boy she was teasing for his lust that she had satiated the previous night. Through this form of recollection, Azgari was perhaps inviting him for another visit, but it also might be, for her, another chance to get the fertilizing fuck that will render her pregnant. When she was trying to seduce somebody by provoking him, she would say, “Oh, he used to talk so big about how he would impregnate me at the first shot, fuck me till I wouldn’t be able to take it, fuck me so hard that he would send me to the hospital, but when it

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came the time to do it, his cock was so small [measuring with her hand to show the length of her middle finger].” This scene of teasing would be repeated in the shop every day with different iterations, and the boy, by this time, if he had already fucked her, would start blushing and smiling to himself or start concentrating on his bicycle and the task of pumping air into its tires. Usually his friends were near, and they would also tease him: “What is she saying? You don’t have any power?” Size, prowess, virility, and the ability to fertilize—all signified by a large cock. If the boy had not fucked her she would change the tense of her statements to “Oh, he talks big . . . but I am sure his is very small, that’s why he can’t fuck me, that’s why he doesn’t come. How will he come, sister [turning to me]? What will he do if he comes? He is so small he can’t fuck.” The reaction of the boys usually would be the same as it was toward their counterpart who had fucked her. The laughter was in this case directed toward the boy who refuses to become a man and go through the rite of passage of losing his virginity, of fucking one of these old, bawdy, pushy hijras. Usually the luckless youth was forced by the merciless teasing of his friends to prove Azgari’s claims wrong—by, “as luck would have it,” fucking Azgari herself. In this drama of seduction can be detected a certain agony that lends itself to be read as sexual pedagogy that shifts somebody’s picture and protocols of the world. I mention seduction because I want to understand what the implications of the sexual pedagogy proffered by the hijra are. The following is an ethnographic example that I want to study as one instance of sexual pedagogy between the hijra and her lover. Jaina would say, A hijra can never set up a house with a man. He is a man, he requires children, heirs, he requires din-duniya [a religion/world]. With a hijra, he won’t have any children, he won’t be able to set up his duniya with her. But then, not all men are the same, very rarely, there is one in a million who forsakes the din-duniya and the desire to have aulaad (children), sets up house with a maichiya,4 and marries her. But then they can’t desire anything else, they don’t think about anything and can spend their days in the manner they want. Every man, no matter how much he loves a hijra, and no matter how long they live like husband and wife, must leave her to set up din-duniya. Look at my case: I spent ten years with Kutty, like husband and wife we lived. He wouldn’t eat anywhere but from my hand. The whole world knew. But his sister’s husband came to me once, when he had gone to Balasore, and said, “Look, Jaina, Allah and I know how pure your love is, but Kutty will need to set up his home, settle down according to religion/law/customs of the world, he will need to worry about children [Kutty ko ghar basana hai, din duniya basana hoga, aulad karna hoga]. If you won’t help us in convincing him to get married he will never get married.” In the night, his sister and mother came to me, pleading to convince him to get married. He was always refusing to get married. So I told him, “I will live with you, I will do this whenever you want, wherever you want, but tu ghar basa, you will have children, you need to work for your future. What will you get staying with me? I can’t give you children or heirs. This is wrong, what is all this?” He said, “You want me to get married, you go find a woman.” So I went

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to the place with the family when the marriage was happening and then when they asked, “Who gives the permission for this marriage?” they pointed toward me. “I was so embarrassed because it is the mother or the father’s right to give permission.” But Kutty said, “No, Jaina will have to give the permission.” So I got them married and came back. After the marriage celebrations, Kutty, that bastard, landed up at my place in the middle of the night and refused to go to his wife. I was scared, about the girl’s side, who was staying with Kutty’s family. They, the brothers of the girl, came to look for him. They told me, “Please send him home, it’s one in the morning,” but he wouldn’t leave. I was in such a fix. What if they get angry? It takes only a second for men to become animals. What if they kill me for stealing their son, brother, brother-in-law? I was so scared that they would start abusing, wake up the entire muhallah (locality). Won’t it cause trouble if he doesn’t go near his wife? He has gotten married, people will abuse him if he doesn’t go to his wife. So I figured out how to send him. I start touching his penis, pleading all the time. When he got hot, I quickly had sex with him and then I told him to go to his wife. He went away. God knows what he did with her, he was back at my place with the morning azaan. I thought, This guy is going to get me beaten up, bastard. I told him, “At least spend the first night completely with your new wife.” He said, “Shut up,” and slipped into my bed. Men will always go to women, there is nothing to feel sad about this. This is the world’s dastoor (tradition) and we are barkhilaaf (out of joint/spoiled/out of step/against) from this dastoor. What to do? Allah pak has made us maichiyas, but to marry men is not our work, this is our shauq (enjoyment). Marrying men is not what Allah made us capable to do, it is very wrong. For men to set up din-duniya is not wrong (galat).

This story illustrates the agonizing quality of seduction and the antagonism inherent in the flirting. With the invitation to participate in a carnal transaction that frees the body from the disciplines of the moral and the social, the hijra must remind the man/boy of the restraints and the risks he runs in renouncing the moral altogether. The hijra must also calibrate the relationship in such a way so as to push the young lad back into the world so that he can become the householder if he is not one already. Calibration refers to the etiquette through which risks and freedoms can be negotiated to sustain not only the social but also those expressions and experiences of the carnal that refuse to stick to the social amicably. The calibration or etiquette allows carnality that might potentially fracture the social to be absorbed while retaining its odd quality. Instances of what I am calling calibration or etiquette can be seen in Malinowski’s Sex and Repression in Savage Society, in which he mentions a variety of sexual taboos in the Trobriands and the varying charges of moral shame attached to them. Although the incest between brother and sister threatens the future held out by the social, Malinowski is still able to document an incident in which the siblings “were able to brave it out and lived in incest for several months till she [the sister] married and left the village” (Malinowski [1927] 2001, 82). He cannot document any incidents of mother–son incest, but there were many instances of breaking the exogamous rules called suvasova that resulted in shame and “eruption of

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boils all over the body.” Thankfully, there was magic to cure the bodily infliction, and the shame for the woman was accompanied by admiration for the man’s plucky nature. The case of the infraction of the incest taboo was resolved through the sister’s marriage. We must read this primal myth of incest as one that allows for a viable socially sanctified love. The following sections will read the myths that the hijras recite similarly—as an allegory of which kinds of love survive and which must necessarily die. Just as incest can be calculated very widely through rules of gotra exogamy, the sexual act within the household must be carefully positioned within axes of kinship, generational distance, and rules of endo- or exogamy to resist incest and result in a viable child, family, and future. The sexual act outside of the house, between the hijra and her lover in a space that is literally a field adjoined to the house or the neighborhood and that I call a fucking field, threatens with a formless future: they don’t desire anything else; they don’t think about anything and can spend their days in the manner they want. The pedagogy of the sexual encounters in Malinowski’s analysis and in the fucking fields of the hijras is the teaching offered to lovers of the contradiction at the heart of the social, around which it congeals and which gives it its kinetic force.5 The primal myth of the death-dealing incest committed by a sister who falls in love with her brother results in two sacred places in the island, one of which has springs where lovers must bathe and the other a plant that is reputed to grow from the chests of the dead lovers. The ritual that ensures success in love needs that plant to make a potion. Death of the incestuous siblings makes fertile the land for all the other lovers. Incest also explains the social etiquette of siblings in the Trobriands; if the brother and sister are supposed to avoid inquiring about and addressing each other directly to ward off the threat or suspicion of incest, even though they are inextricably linked with each other for life, what is this form of etiquette supposed to do? Is this the force of the moral that anthropologists have articulated in kinship? What are the threats that emerge from the social that endanger it and how do the hijras domesticate them? Let us begin by studying the etiquette, the threats it wards off, the contradictions that it hides and reveals, and resolutions offered in the fucking fields where the hijras meet their lovers.

THE DEAD BABIES

Statements about the baby or references to the pregnant state of the hijra did not surprise any of us that lolled about every day; they were an established pathway of humorous disruption of mundane everyday concerns. They were disruptive because, even when not unintelligible, they would appear suddenly, and even though they didn’t surprise us, they would make us laugh. Might we read the constant reappearance of this ghastly baby as a form of repetition? If so, then we might read the flirting and fucking as sustaining for the social body, by allowing, in Lévi-Straussian terms, the animal in the human to be repressed and released. Or in other words, the baby and in turn the future it promises attenuates the bestial hijra, suturing it to the social but never squaring with it.

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The way that Jaina, her friend Shamsheri, and I would amuse ourselves in the hot summer months would be by playing tricks on a certain blind old maulvi. Coming across him in our early-afternoon/before-lunch rambles, Jaina would drag me in front of him and say, “Oh maulvi saheb, please breathe on her, she is not able to get pregnant.” The maulvi saheb would touch my head with my long hair bunched up and would be convinced that I am a woman and would breathe and mumble some lines while Jaina and Shamsheri would be at pains trying to control their laughter. They would finally start laughing hysterically while I would look amused at this trick, which was growing old after the twentieth time we had done it. Jaina would say breathlessly, “Oh, you’re sure to get pregnant tonight.” The baby was, in many instances in the marketplace, an invitation to flirt, to flatter men about their virility, or to provoke them into proving their prowess. But, as I have mentioned, it is also pedagogic. Siegel (2007) writes: There is always a trickster in the game, a joker in the deck to prevent the rules from becoming oppression, the contest from becoming tedious or dull in losing its surprises and enchantments. . . . Through his lies, pranks, games, and jokes, turning the world upside down, the trickster—divine, human, or bestial—in the heavens, court, market, village, or jungle—is the guardian of humor, prompting us to laugh at ourselves, to take nothing seriously, to realize that profundities are but vain inventions of desperate intelligence. He exists in order to remind us of the game, that the game is all. (292)

The trick that Jaina and Shamsheri played on the blind maulvi was perhaps an instance of turning the world upside down and a way of negotiating the chafing social. The bestial hijra reminds her lover that the world, the family, and the household are all a game, but nevertheless a game that he must necessarily play, and the fucking is a constant reminder that the rules of the game are never in one’s favor, that the carnal even though mediated through the social will never sit with it comfortably. The stakes of coming to endure the social, hijras remind us, are mortal: at its heart it exacts a cost that cannot be survived intact. Hijras’ babies did not always cause amusement and humor. When one’s audience is not the young men with whom one is flirting or in love, or when the scene is not that of seduction, the story often turns wistful. Akhtari, another hijra in Bhadrak, told me this story on a hot afternoon when she was uncharacteristically despondent. At Chisti’s dargah6 in Ajmer, there lives a sada suhaagan (one whose husband is always alive/always married/never a widow). She is a hijra. She is not actually married to a man or the baba but she dresses that way, her hands are full of bangles and her body covered in beautiful gold jewelry. A person has to go and plead to her and say, “Suhaagan, we don’t have a child, please ask the khwaja to bless us with a girl or boy, whichever they want.” If somebody wants a child they have to go to the dargah, the khazim over there will direct them to the suhaagan. Then the suhaagan will start pleading to Allah, “Ya allah, look, this woman has come, asking for a child. It’s been so long since she’s married, why haven’t you given her a child?” She will become very passionate in her pleadings. She is very beautiful,

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more beautiful than women. She will not leave till it becomes Allah’s wish to give the woman a child. She will remove her jewelry and break her bangles in josh, asking Allah, “Tell me, are you going to give a child or not?” Finally, Allah will change his mind and say, “Go, girl, go home. In nine months you will have a child in your lap.” After Ramzan, during Eid, the first shroud at the khwaja saheb has to come from a hijra, a maichhiya, otherwise the stove will not catch fire, nobody will be able to make the wood burn, for the feast. Nobody else is supposed to put the first shroud besides a hijra. There was a maichiya that used to live with Chisti, she was well versed in the Quran, so her name was Hafiz Jamal, but she was a hijra. She had started talking to a rich man’s son, and soon they became lovers. They both were very beautiful. Soon, people got to know that they were in love. The villagers went to the seth: “Your boy is roaming around with a hijra, aren’t you scared he will become spoiled?” The man went to his son and asked why he was roaming around with the hijra. The son replied, because he loved her, why are you displeased with this? “No, people are starting to talk, you are my son and she is a hijra, she is not a woman. What can she give you [Tumhara usse kya kuch hoga]?” The son replied, “But she is also a beloved by khwaja sahib like all of us.” The boy and the hijra both went to the khwaja and told him, “This is a seth’s son and I am a hijra. You know everything about me. Do one thing: give me a child of my lover in my stomach, that looks exactly like my lover, and as soon as I give birth kill me.”7 After a few days, she was pregnant. They went to the doctor, who was so surprised. He took the baby out through an operation. After the child was born the word had to be kept that she had to die. But as she has asked, the world knew that a hijra had given birth to a child. The child died as well with the mother. But the whole world knew that her love was true because khwaja saheb had given her a child. Her mazhar (shrine) is still there, and it is written, “Hafiz Jamal Bibi,” now that she had become a mother. vs:

What happened to the boy? [Akhtari looked a bit confused]

a:

He got married to someone else. [I was a bit surprised and extremely disappointed that he hadn’t killed himself because of the pain of being separated from his beloved, but Akhtari didn’t register that and was lost in her story.]

a:

Since then the hijra’s chaddhar is the first chaddhar to go on the shrine on the tenth day of Rajab, three months after Muharram.

There are many different versions of this story. The other version, recounted by Gayatri Reddy in her ethnography, goes as follows: “There was once a hijra named Tarabai who desperately wanted children of her own. So she went to Ajmer Baba and asked for this wish to be granted. Only, she said, ‘I want a child to be produced in my womb,’ and did not explicitly ask for it to be born. So her pregnancy continued for several months and finally, unable to bear the pain and burden any longer, Tarabai slit her stomach and removed the baby, killing herself and the baby. But to this day, hijras who go to Ajmer Baba’s dargah inevitably pay homage to Tarabai as well” (2005b, 134–35).

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Yet another version was told to Serena Nanda when she was conducting her ethnography in 1981: In Ajmer, in North India, there is a holy place that belongs to the hijras. It is called Baba Darga, and it is on top of a hill. One time, during Urs, many people were going up the hill to pay respects to Baba. One hijra was also there. She saw a lady with four children and offered to carry one or two of them. The lady became very angry and told the hijra, “You are a hijra, so don’t touch my children.” This made the hijra feel very sad, so she asked Baba for his blessings for a child of her own. But she only asked for a child and didn’t ask Baba to bring the child out. The pregnancy went on for ten months, and her stomach became very bloated. She went to the doctors but they didn’t want to perform an operation [cesarean section] on her. Eventually she couldn’t stand the weight any longer so she prayed to the Baba to redeem her from this situation. But Baba could only grant her the boon, he could not reverse it. When the hijra felt she could stand it no more, she found a sword at the darga [sic] and slit herself open. She removed the child and placed it on the ground. The child died and the hijra also died. Now at this darga prayers are performed to this hijra and the child and then to the Baba. (Nanda 1999, 19)

And in yet another widely circulated version—one that you will never hear from the hijras—the khwaja saheb was mocked by a hijra who said that he was no saint and could perform no miracles, challenging him that if he could perform miracles he should be able to make her pregnant. The hijra got pregnant but could not give birth since she had no vagina, so she prayed to khwaja to relieve her and asked for his forgiveness. The khwaja could not take the child back so she died along with the baby in her, but since then the hijras have flocked every year to pray and ask for the khwaja’s blessing. The Chisti dargah is not the only one associated with myths or legends of saints and their ability to bestow fertility on hijras. I was told a similar story of the saint Ganj Rawan Ganj Baksh, whose shrine is near Aurangabad. His powers to bestow fertility were mocked by a hijra as well, who then found herself pregnant, and, as the story goes, she gave birth, but both she and the baby died at childbirth. As in Ajmer, the tombs of the hijra and the baby are near the shrine, and the fruits of the trees of this shrine are supposed to make an infertile woman pregnant. Similar to the workings of the primal myth of incest in Malinowski that becomes the basis of socially sanctified love, the one that renews the social, the dead hijra and her baby offer a resolution when the social threatens with death in the form of infertility—a resolution riddled with pathos because it is also an allegory of what is survivable. Each version, differing ever so slightly, was told to make a point to the anthropologist. For Malinowski, the slight variations point to a complete cultural formulation, or “picture”; for example, Reddy’s informants told her the story to make comprehensible to her that hijras were different from women. Reddy (2005b) analyzes the story to ask, “Are hijras primary agents of gender subversion in the Indian cultural context, or are they uncritically reinscribing gendered categories through their desires and practices?” and

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concludes that hijras’ “gender performances instantiate their ‘inherently ambiguous’ and axial position in the Indian imaginary” (135–36). Though a great deal of scholarship reiterates the point about the “ambiguous nature” of hijras, and some scholars do it with good intentions, the formulations end up with the categories of resistance, subversion, and resignification of the already given to forefront the normative in Indian sexualities. But let us instead make a different move and locate the hijra within the larger Indic imaginary and ask how, in Akhtari’s story, religious idioms and myth make comprehensible the topography of desiring men. Then the story reveals the pathos in such desires that can never achieve currency. In Georg Simmel’s words, desires that cannot twist themselves into a price and hence acquirement, exchange, and possession and can lead the desiring subject only to her death, as shown in the stories above—but deaths from which the social sustains itself and ensures fertility and futurity (1984, 134). While Reddy’s analysis is precise and helps us realize that the hijra has placed herself outside the complementarity of the male/female, we will need to place it next to Nanda’s conclusion, which focuses instead on the register of asceticism in the hijra. Then the hijra appears not only outside the male–female binary but also outside the project of the family and its various economies and moral constraints. Nanda writes of the story, “On the one hand it [the myth] expresses the wish of some hijras to have a child, and yet on the other hand acknowledges its impossibility. The death of the hijra and the child suggests that hijras cannot become women—in the most fundamental sense of being able to bear a child” (1999, 19). But one may yet ask, How can one respond to impossible desires and longings? The impossibility of a desire that does not cool down no matter how crippling the discouraging evidence, and tugs at the carnal to seek comfort, solace, or release, makes a claim of a different sort on the subject and on the anthropologist.

CONTIGUITIES

Let me now return to the story and draw out two sets of concerns, the first being the contiguity between God, the khwaja, the hijra or the sadaa suhaagan, and the couple that wants a child. The asceticism of the khwaja and the asceticism of the hijra in Ajmer come together here to bestow the infertile couple with a baby, whereas the fruits from the trees growing near the grave of the pregnant hijra in the mazhar of Aurangabad are supposed to grant fertility to an infertile woman. Lives and families are lived in the wake of the dead hijras and their babies, and the wood in their stoves will burn only after the hijras have given their shroud to the khwaja. The form of exhortations of the hijra from the khwaja are telling; they can also be read as flirtatious—sweetly coercing the god to bless the infertile couple with a child. The khwaja is similar to the hijra to the extent that his desires are focused toward god and consequently he steps out from the domestic economy as well, resulting in a different set of obligations. In the story Akhtari told me, the miraclegiving powers of the khwaja are relied upon to bring meaning to the claims of love that the hijra feels toward her man. When the father interrupts the love affair by saying that

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the hijra won’t be able to give anything, or will be useless in the task of setting up home and house, and thus dismisses the love precisely because it cannot transform the man into a father and a householder and thus push him into the economy, the hijra has to make visible her love, and it is this act of making it visible that also gives value to her love in a form that will be recognizable by the father, here standing for the social. She does so by giving birth to a baby. But the baby and the hijra both die necessarily, perhaps because the point of the child was to show the world that the love was true—that the love was valuable. The implication of this death is that perhaps the love between the hijra and her lover cannot survive in the realm of visibility and value, that it can endure only in the darkness of night. It can exist only in shadows and outside economy, exchange, and value—like the one-in-a-million men that Jaina spoke about who fall in love with the hijra and leave the world of men to spend their remaining life doing whatever they want. In the last version of the myth, the one that features the hijra mocking the saint, the hijra becomes the skeptic; she questions the value of the khwaja’s grace and his proximity to god. The khwaja is then called upon to give visibility/value to his love for god. He does so through a miracle: he makes the hijra pregnant. But once again this sign of love, the hijra’s baby, cannot survive in the realm of visibility/value or it cannot gain entry into the public and a foothold in the social, and both the witness and the visible form of that love must die. The khwaja and the hijra are then not only contiguous but congruent as well in the way their desires find a moment of visibility but then quickly disintegrate to return to a priceless world, which is free of questions of value and fruition. It is the inextricability of value and the baby that prevents the hijra’s love from having any currency. In other words, her love will never become valuable because she cannot have babies, and the moment she does, she won’t remain a hijra anymore, she will become a woman—a possibility impossible to sustain, even with the help of god. This set of myths also offers us a key to the understanding of the love between the hijra and her lover. If the khwaja and his god are placed in exactly the same position as the hijra and her lover, then we might ask, What are the implications of same-sex desire and love in this site where the lover is deified? The sadaa suhaagan, at the point where the hijra and the khwaja meet, reveals the form of loving that Akhtari’s myth was signaling. The following are a few lines from the poetry of the Sufi Madho Lal Husain to illustrate the figure of the sadaa suhaagan. Shak gia beshaki hoi ta mai augan nacci na je shahu nal mai jhumar pava sada suhagan sacci hai jhuthe da mukh kala hoya ashak di gall sacci hai shak gia beshaki hoi ta mai augan naaci hai (Hanif 2000, 135)

The doubt has vanished and doubtlessness is established, therefore I, devoid of qualities, dance If I play (thus) with the Beloved I am ever a happy woman [sadaa suhaagan]

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The liar’s face (he who accuses) has been blackened and the lover’s statement has been proven true. Because the doubt has vanished and doubtlessness is established, therefore I, devoid of qualities, dance.8 (135)

The contiguity between the Khwaja and the hijra, who both meet at the point of the sadaa suhaagan, would explain why so many men would come to Jaina and ask her to breathe on a small vessel of water after reading the Quran. Upon inquiring, Jaina would say, “His wife is pregnant, and ill, so that her health and the baby’s health is not harmed and to ensure everything happens smoothly, they will take the water and cook their dinner with it.” Apart from having the power of barakat, Jaina made her living by making garlands of flowers, and only her garlands were allowed in the mazhar. The Khwaja and the hijra both in their turning away from the world into a formless future, which some would call liberation, point out the inevitable failure of the social in organizing bodies, anatomies, and least of all the carnal. The tomb of the khwaja as well as the fruit and leaves growing out of the carcasses of the hijra and out of Malinowski’s sibling lovers make fertile grounds for the social to sustain itself. The sexual pedagogy makes apparent the uncertainty of the world, the contradictions that the social harbors within it, and makes apparent that the alternative to this meaning- and value-giving game is a formless future, which for the khwaja is liberation and consummation with god. The hijra finds her liberation in fucking, in consummating with everybody who might be seduced. The second concern is the men’s obsession with the hijra’s reproductive capabilities. Whenever Lovely, that beautiful hijra, would come to Jaina’s flower shop in Bhadrak while she was waiting for her train to Jaipur, she would create a hungama (pandemonium) with her spangly sari revealing her breasts and the inviting sway of her hips with which she used to walk. The men would smile and stare, with desire dripping from their eyes. Jaina would not help matters by screaming loudly throughout the market to Lovely’s embarrassed amusement, “Come, somebody, buy her for tonight. Seven hundred rupees for one night.” The men would not ask Lovely directly but would come to Jaina. The barber who regularly gave me a shave would ask her, “Can she give birth? Can she get pregnant [baccha kar sakti hai kya]?” Whenever a particularly feminine, young, womanlike hijra would appear in the public places, the boys would embark upon a long conversation with hijras they did know very well, discussing whether the beautiful hijra had got herself operated, whether that operation also meant that she could now give babies, and how that was possible. I find both the men’s inquiries and the hijras’ answers very interesting. The fact that the question was asked would allow the hijra to say, “Yes, of course she can, the doctors in Calcutta, Delhi, Bombay can do all this now.” If Jaina were asked this question then, depending on her mood, the hijras would sometimes be able to give birth. When Jaina was flirty and not tired (“Of course she can, why don’t you try? Come tonight, you can see for yourself”). But when she was cross and sleepy the answer

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would rob the hijras of the miraculous operation that would allow them to give birth (No, how will she give birth? You mad fucker). The questions would then be whether she could get penetrated, the answer to which would always be yes. What does this encounter, consisting of questions asked repeatedly in the face of all evidence to the contrary, tell us? The men know that the hijras can’t give birth. Why then do they hold onto the hope? Does their persistence show that perhaps they could one day achieve the impossible goal with the help of doctors in large cities, actualize a miracle similar to the one performed by the Khwaja Garib Nawaz? What is being heard in these repeated references to this phantom baby? What can we make of the laughter that ensues? What of the serious questions asked, not just out of curiosity? Even when they receive misleading answers, the questions don’t go away; they appear once again at the appearance of a beautiful new face or an old familiar face just looking very beautiful at that moment. If repetition belies the impossibility of choice, then the anxiety that the persistently asked question signals is one that Jaina has already mentioned: men require dinduniya; no matter how beautiful the hijra is, she can’t give them children, just terror and beauty. The hijras with their laughter, and unbearability, signal the same anxiety that Siegel writes about: “Buddha negated the value of empirical existence, of family, society, and self, for the sake of liberation from the world of life and death. His negation was an affirmation of the possibility of liberation, of the great joy of extinction. The satirist, on the other hand, affirms the value and necessity of social, domestic, and personal interaction. His liberation is in, not from, the world” (1987, 225). Both the men and the hijra want to have babies; unfortunately, they can’t have them with each other. This incongruence is the scratching of the social against the carnal, felt in the wistful repetitions and sympathetic clucking, resulting in the never-ending violent play between the human and the animal, manifesting in the idea of the sex drive, and excused in the idea of instinct. The affirmation of the social, the resolution, ironically comes from this wild sex, the satirist, the hijra, like Jaina tells her lover, you have to set up your house, din duniya, that is where liberation is, otherwise one becomes an ascetic, a hijra facing a formless future, the “great joy of extinction,” the pleasures of castration. The difference in the two forms of liberation also offers a resolution to the impossible desires, the inevitable failure; the threat of the animal, like the risk of incest, is also attenuated through temporal and spatial deferral. Jaina and I ran into an old man hobbling along, leaning on his stick. He called Jaina away for five minutes, whispered something in her ear, and went away. I asked Jaina who he was and what he wanted. She said, “Oh, his name is Ghaffoor babu, he is the grandfather of that man who came yesterday to your hut.” I said, “Oh, what was he saying? Was he asking you to not do kaam [fuck his grandson]?” Jaina laughed and said, “He might be walking with a stick but he himself is ever ready to fuck.” vs: j:

Have you ever fucked him? Yes, when we were both young, now I am scared by the way he is out of breath that he will die fucking me.

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vs: j:

You’ve fucked him and his grandson? I’ve fucked his younger brother, both his sons, and two of his grandsons.

Not what I had in mind when I came collecting narratives of love affairs, I was a bit gobsmacked by this largesse that didn’t pay any heed to laws of incest. When I finally undertook the daunting task of drawing kinship charts, I discovered Jaina, Shamsheri, Azgari, Akhar, Mehraaj, and Mangu had between them fucked generations of men. Perhaps this might be the sweet sad resolution of repeated failures of fertility, repeated attempts that fuel the play between failure and hope, animal and human, nature and culture, the social and its carnality through sons and grandsons—an allegory of survivability.

S U K H D U K H : T R A N S A C T I O N S I N L A U G H T E R A N D PA I N

The laughter is important. It makes lives in Bhadrak, one of the poorest districts in India, bearable; it is a transaction of sukh dukh (sadness and joy). Once, when a child not yet in his teens was staring at Jaina’s breasts with a lot of hunger, she picked up her lungi and flashed the seductive darkness of the region between her legs and screamed, “Come fuck me.” I started laughing uncontrollably, but Amrita, the NGO tranny, told me not to encourage Jaina.9 Later I asked Jaina, Akhtari, and Shamsheri, “Why do you always talk like that? Why do you do that?” Jaina said, “I try to make everybody laugh, even you, who have come so far away from your mulk [land]. You must feel strange here. . . . By laughing, the heart becomes light. These men they come to me to talk, they share their sukh dukh and their problems and I try to make them laugh and make their ji halka (lighten the heart/chest/soul).” Ji Ghabrana is when the heart beats fast because anxiety and worry have gripped it in the face of some problem that one cannot surmount, and in Bhadrak there were problems aplenty, the external conditions of structural poverty manifest in all their guises, consequences, and effects. Men were forever signaling Jaina and the others to come aside, and when asked about the animated, surreptitious conversation, Jaina would tell me (in confidence, of course) what the man said about the problems he was facing. Laughter (or hasya one of the sthayibhava of srngara) that made the ji halka, was a form of care that the hijras offered, the references to the baby and the fucking would arouse the men—and would reveal the pleasure of desiring and result in the pleasure of being desired in men that were scarcely desired in the world next door. It is this form of sharing, sukh dukh and making the ji halka to allow the burden of life to be borne by beautiful men that would result sometimes in love. Love, manifested through the feeling of being pregnant—of carrying its moral witness, the baby. The baby that would transform by its very existence, and likeness, dead or alive, the hijra into an appropriate object of desire— a woman. Hijras through their theatricality inherit a form of aesthetics that can be read

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as Rasa. Rasa is the making of an emotion present when it is not an experience that one has gone through; this aestheticization of the everyday through srngara helps form a buffer against the world.

T H E P R E S E RV E R

What form of caring is done by the sharing of sukh dukh (happiness and sadness) and by associating the laughter and the fucking? It is not the economy of creation and destruction but I would argue the actions of preservation, of sustaining and sustenance. Looking at the care afforded by the erotic relationships of hijras through the eyes of preservation or, more accurately, of sustenance would then allow the hijra to enter the economy of life diagonally. She is bent, or banka. Rasa preserves us from the despair of this transient world, it is what triangulates and makes possible the economy of creation and destruction. It is also the form of care taken up by the sadaa suhaagan who implores passionately for a child to be given to the barren woman. The sadaa suhaagan cannot produce children and the family, and like Jaina, she doesn’t destroy the possibility of the householder in men. This form of care sends the lover to his wife, asks Allah to give the child to the woman, blesses the child and the woman with prosperity, fertility, and fortune so as to make her life bearable in the world, while directly opting out from these projects at the same time. The care that makes the ji halka, cannot remove or solve the problems of the world, but it fortifies its inhabitants to bear its knocks once again. The men would speak of the carnality of the fucking in explicitly constitutional ways: “There was so much heat built up in my body, kaam karne ke baad [doing work/fucking] the body has turned calm”— the anxieties of the world, the heat generated through desire, all of this calmed by the fucking. The sharing of the sukh dukh allows her to partake in the world in a certain way. This is what qualifies her renunciation, her diagonal entrance into the economy; she is not inside or outside of the home and world but lives beside it. This also explains the laughter, the irony. In his study of the laughter of Krishna, an avatar of Vishnu, the preserver, Siegel writes, “Within the history of religion of Krsna there has been a dialectic at work between the theologian and the comedian, one that balances the god and creates an invigorating tension. The theologian, stressing the absolute divinity of Krishna, makes the god serious; the comedian emphasizing the absolute humanness of Krsna, makes the cowherd funny. The more divinely serious he becomes, however, the greater his potential for comedy, for comic revelations of his humanness; conversely the more comic he is, the greater his appeal, the greater his potential for being taken seriously. Comedy vitalizes, then, the very devotion of which it makes fun. It preserves what it seems to destroy” (1987, 370). The rectum then might be the grave, but the semen it ingests is an accursed share and its death inevitable. The plenitude celebrated by the hijra in the form of blessing other people’s babies and marriages, through which they earn their living and materially sustain their existence, is

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related to the laughter and fucking through the myth retold by Akhtari. She reads a myth of fertility bestowing fruits and shrines as one emerging from a love story failed by the world, the connection is offered through rasa. The granting of fertility and the sexual pedagogy that the hijra instantiates alleviates the cruelties of the world and the domestic that result in ji ghabrana. Siegel wrote of laughter, “Comedy can be refuge, if not redemption; its laughter can be solace, if not release.” The fucking can offer respite while running the risk of rendering one a hijra ascetic as well, but there is a limit to this relief, though, and it comes in the figure of the fetuses that the hijras imagine and claim to have had fertilized in their wombs. While desires might be resolved through the lover’s son and grandson as she is impregnated every evening, the hijra’s repeated forms of love, in their ceaseless waves, can result in a very melancholic experience of temporality with no liberation in sight. But at least there is the laughter and the fucking.

N OT E S

1. See Reddy 2005a for the deployment of hijras in this double-pronged set of discourses: Interestingly, it is perhaps for the first time in hijra history that they are not perceived globally as sexual (rather than asexual) figured, as metonymic figures of “sexual difference” in compendia of Lesbian, Gay, Bisexual and Transgendered (LGBT) studies on the one hand, and as an integral part of the MSM [men having sex with men] or kothi sexual culture on the other. While hijras might have thought themselves a part of this wider kothi universe and engaged in practices considered “homosexual” for years it appears to be only recently that their sexual practices have become commodified and that they are now primarily perceived as “sex workers.” (263)

2. See Cohen 1995, in which he writes: “[E]conomic marginality is not irrelevant to the construction of sexual difference and sexual desire—without reducing desire and difference to utilitarian schemas and without erasing the pleasures of inalienable difference. My suggestion is that sexual difference is experienced and enacted through other forms of hierarchical social difference, that it gives meaning to and takes meaning from other hierarchies; patriarchal, racial, economic, generational, national, and so forth” (295). 3. I use fuck throughout the article not only to remain close to the word most used, chodhna, by my friends in Bhadrak but also because I would like my exercise in writing about sex to be taken in an enthusiastic sympathy with Mark Doty. Doty (2010) writes, in his short story “The Unwriteable,” I have the language of pornography, I have the language of anatomy or medicine, I have the language of euphemism and I’m happy with none of them. In Nick Flynn’s memoir Another Bullshit Night in Suck City there’s a list, maybe two or three hundred terms, for being drunk. I could make a list like that for fucking and come absolutely no closer to what I want to say; it is as if the transformative bodily experience lives on one side of the veil and language on the other. What can I say? I fucked him, he fucked me, and then we’d go out and get something to eat and then we’d go back and pick up where we left off. Wild nights, wild nights!—pressurized to diamond-light by secrecy for nearly three years. We never spoke of them to anyone, not a single word.

4. Maichiya is the Odia word for “hijra” and is used interchangeably in this paper, as it was in my conversations in Orissa.

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5. By saying that the myth offers the social a kinetic energy I mean that incest, and with it the rules of exogamy, not only stand as the most dangerous taboo to break but, as Malinowski points out, also become extremely erotically charged and temptable, resulting in a dialectic of eroticism and prohibition that defines the landscape of desire. Malinowski writes, “Again, the brother–sister incest is the most reprehensible form of breach of the rules of exogamy—which institution makes it illicit to have connection with any woman of the same clan. But though the brother–sister incest is regarded with the utmost horror, a breach of clan exogamy is a thing both smart and desirable, owing to the piquant difficulties in carrying it out. In accordance with this, dreams about clan incest are very frequent” (2001, 80). 6. Akhtari is referring to the famous shrine (dargah) of the Sufi saint Moinuddin Chishti. There were well-planned bus tours that took people from Bhadrak in the east, across the subcontinent to the northwestern city of Ajmer. A lot of daily talk was about how to raise money for family members who wanted to take these bus tours. 7. This demand for resemblance can be traced back to the laws governing adultery in Manushashtra. Doniger writes, “Manu assumes that the field is entirely neutral, and that the crop (son) sown in it will always resemble the seed (the father). Therefore, you should never waste your seed by shedding it in another man’s ‘field’ or wife, but you are not harmed if another man sheds his seed in your wife (in that you own the son resulting from that act)” (Doniger 1995, 163; emphasis mine). The hijra’s demand for resemblance is then also a demand for the legal proof for paternity. She is owned by that man, and the baby is his. 8. Sultan Bahu, a seventeenth-century saint, has also mentioned Sadaa Suhagan in at least one of his poems. The one that comes to mind is the following: zabani kalma her koe pad-dha, dil da pad-dha koi hoo Jithe kalma dil da padhiye uthey mile zabaan na dhoi hu Dil da kalma aashiq perdhe ki janan yaad galoi hu Aeh kalma asa nu pir parhaya bahu main sada suhagan hoyi hu Everyone recites the creed of the tongue, few say the creed of the heart Where the creed of the heart is said, there is no room for the tongue The lovers say the creed of the heart, what do sophists know? It is this creed that the master taught us, Bahu, and now I am eternally blessed [sadaa suhagan]. Translated by Jamal Elias (1998, 75)

9. The term NGO tranny refers to a transsexual or a transgendered person who is usually from the cities and works in NGOs that constitute the network of AIDS cosmopolitanism that depend on imparting public health wisdom to Female Commercial Sex Workers, Hijras, Kothis, Active and Passive Men who have Sex with Men. They are a conduit and travel to and fro between the local sites where the infection takes place and conferences across the world where global speak about health and wisdom take place and to which they are invited so as to gain legitimacy for their concerns. Some don’t identify as hijras because of their class and caste differentials whereas some hijras on the other hand are invited precisely because of these differences that legitimize their role as local experts.

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REFERENCES

Cohen, Lawrence. 1995. “The Pleasures of Castration: The Postoperative Status of Hijras, Jankhas and Academics.” In Sexual Nature, Sexual Culture, edited by Paul R. Abramson and Steven D. Pinkerton, 276–304. Chicago: University of Chicago Press. Doniger, Wendy. 1995. “Begetting on Margin: Adultery and Surrogate Pseudomarriage in Hinduism.” In From the Margins of Hindu Marriage, edited by Lindsey Harlan and Paul B. Courtright, 160–83. Oxford: Oxford University Press. Doty, Mark. 2010. “The Unwriteable.” Granta 110 (2010): 7–24. Elias, Jamal. 1998. Death before Dying: The Sufi Poems of Sultan Bahu. Berkeley and Los Angeles: University of California Press. Hanif, N. 2000. Biographical Encyclopaedia of Sufis—South Asia. New Delhi: Sarup and Sons. Malinowski, Bronislaw. (1927) 2001. Sex and Repression in Savage Society. London and New York: Routledge. Nanda, Serena. 1999. The Hijras of India: Neither Man nor Woman. Belmont, CA: Wadsworth Publishing Company. Reddy, Gayatri. 2005a. “Geographies of Contagion: Hijras, Kothis, and the Politics of Sexual Marginality in Hyderabad.” Anthropology and Medicine 12, no. 3 (December): 255–70. ———. 2005b. With Respect to Sex: Negotiating Hijra Identity in South India. Chicago: University of Chicago Press. Siegel, Lee. 1987. Laughing Matters: Comic Tradition in India. Chicago: University of Chicago Press. Simmel, Georg. 1984. Georg Simmel: On Women, Sexuality, and Love. Translated by Guy Oakes. New Haven, CT, and London: Yale University Press, 1984.

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4 NEW LIVES FOR CHILDREN Adoption Documents and the Law in Central Mexico

Anaid Citlalli Reyes Kipp

It was in the context of a media scandal that I was able to visit for the first time the dead archive of the local DIF (Sistema para el Desarrollo Integral de la Familia [System for Integral Family Development]), in central Mexico, where I was carrying out research on adoption.1 The DIF is the government office charged with coordinating and implementing adoptions and other social-assistance policies in Mexico. The media scandal involved the case of a poor indigenous mother who had accused the DIF of unlawfully giving her children up for adoption a year earlier. In response, local NGOs and opposition-party members were demanding an immediate review of all adoption cases administered by the state government.2 The imperative to open the dead archive reached new levels when newspapers reported three months later that information about the total number of adoptions carried out since 2000 did not exist. Indeed, according to the written response one DIF worker gave to the NGO inquiring about the scandal, the dead archive “was lost.” In reply, the DIF’s director told the press that there were no lost files, that what happened was merely a wrong response on the part of the worker, and then went on to praise the work of the previous governor. He promised that a precise review of the files would be made to make the information transparent to the public, with punctuality and objectivity. When the news broke, I had been conducting fieldwork in the DIF’s Adoption Department for a year. Although DIF authorities knew of my intentions to write a dissertation on adoptions, I was absorbed into the DIF’s bureaucratic structure in a rank similar to that of a professional trainee, like other students carrying out the social service that is

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required by the Mexican educational system. Specifically, I worked as a trainee to the female social workers, secretary, psychologist, and lawyers in the Adoption Department, which is formally part of the DIF’s legal arm—the PDMF (Procuraduría de la Defensa del Menor y la Familia [Office for the Defense of the Minor and the Family]). The head of the Adoption Department, the only male in the office, was our immediate jefe, or boss. We usually called him licenciado, alluding to the fact that he had a licenciatura degree as a lawyer and was our superior. As soon as the media scandal unfolded, the licenciado received a “higher order”: Numbers about all adoptions since 2000 had to be created, and a complete legal adoption file needed to be presented to back up each number. Those adoptions with no complete file or judicial ruling could not be counted or registered in the official list. Yet there was no record of the dead archive files anywhere, and no way to know what information it contained. A lawyer by profession, the licenciado was well aware of the dangers that conjuring up these not-so-dead documents posed to the state government. As he said to me: “To dig up all this information is a double-edged sword. It could bring us a lot of trouble in the future.” He feared the powers in the old files—their capacity to come back to life and haunt the state authorities for their own nonconformance to law—and was nervous about making an adoption list with information that could be traced in the future. Who knew what sorts of secrets these documents contained and how they might further damage the legitimacy of the DIF? The more these legal documents were to be scrutinized outside of their regular bureaucratic path, outside of the context that legitimated them in the first place, the more they could “put to death the very thing [. . .] which carries the law in its tradition” (Derrida 1998, 79; emphasis in original). The dead files held within them the power to expose the fragilities and arbitrariness of the state’s legal work. In part, the licenciado knew that his superiors would have preferred the archive to be really dead, forgotten, and concealed, with all its secrets and heterogeneity buried forever. But he also knew that there was no other site through which the state could try to restore its credibility as a “rightful” holder of legality and the past. As Max Weber (1978, 957) famously noted, bureaucratic authority is based upon written documents. The compilation of documents and the repetitions of filing were what supported the conditions of possibility for governmental authority (Feldman 2008). For the licenciado it was also a matter of pleasing his superiors, and thus of keeping his job and possibly even rising within the DIF’s bureaucracy. As such, it became clear to me how adoption files, in their greater or lesser capacity to fulfill the legal requirements of Mexican civil law, carry a double—and unevenly felt—threat: they are threatening to birth families and parents such as the women of the media scandal, who can be separated from their children definitively with such rulings; and they also pose a threat to the state government itself (Hull 2003; 2012a), as documents that can expose an arbitrary use of the law. The spectral structure of the archive and its documents (Derrida 1998), articulated in the demand of remaining dead and alive at the same time, is precisely what makes it both a source of danger and a hope for future justice.

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At the level where bureaucracy imprints itself in law, government representatives fear the traces left by their own production of these legal files at the unstable limits between the legal and the extralegal. By paying close attention to how government workers not only “use facts,” but also produce knowledge that can serve as legal “evidence” (Valverde 2003, 5), I explore the power of documents to simultaneously terminate and give life to relationships. As I will argue, the ordinary intersection of the law with other normative “non-expert knowledges” (Valverde 2003) both authorizes the state’s legal outcomes and makes documents a site of uncertainty and ambiguity. Specifically, I am interested in exploring how unquestioned understandings of “stratified reproduction” (Colen 1995; Ginsburg and Rapp 1995) that allow for the imagination of some poor mothers as unfit to nurture and reproduce filter into the production of official paperwork and help it move smoothly across the layers of state bureaucracy and its legal system. In the following pages I look at the blurred—and changeable—spaces between the law and its violation (Das 2004) in which documents that conform to the requirements of Mexican adoption laws are produced. I am particularly interested in understanding how these spaces are filled in with forms of common knowledge that sanction differential valuations of life for poor mothers and their children. I understand these legal requirements as involving the production of a certain “form” of uniformity, repetition, and generalizability across files, through which a specific content is allowed to move forward. As Das (2004) has argued, legal protocols require rerecording events into a template legible to the law. Here, formulaic modes of recording and encoding truths are oriented toward “the imagination of how a case will be presented in the court of law” (229), and also toward how the case might be able to move through the system as easily as possible. As such, the form in which documents are created “anticipate and enable certain actions by others” (Riles 2006, 21). The creation of “sound” adoption files is in this sense facilitated by normative or “common sense” (Geertz 1983) knowledges about whose life is worth saving, whose relationships can be put to death, and who has the right to reproduce and produce the nation. To explore this dynamic, I focus on two events: a meeting in a temporary children’s shelter, or state albergue, and an adoption council meeting. It is through the procedures followed in these two spaces that a category of children—those who are considered to be legally freed from all previous kinship attachments and thus eligible for adoption—is brought into being. Here, I am specifically interested in how the documents and files that emerge from such contexts are able to produce actionable cases and “effects of law” (Rose and Valverde 1998; Valverde 2003) in terms of their ability to both generate threats and guarantee rights to children (Poole 2004). Instead of trying to uncover “hidden truths,” such as corruption and disorder beneath an image of order and legality (Nuijten and Anders 2007), my interest is in the ordinary procedures that enable files to successfully move across bureaucratic and legal sites, facilitating the production of a category of adoptable children. In this regard, my aim is to question where law is located in the first place by looking at how its boundaries are constituted in specific cases. Thus I pay attention to the mobility both of the documents

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themselves and of the very line between the legal and extralegal. Here, Bruno Latour’s work on the making of law in the French Conseil d’État is methodologically interesting because it also aims to study the production of legal knowledge by treating the law as a network of things and people (Latour 2010). As Levi and Valverde (2008, 817) have observed, Latour arrives, through the examination of the “physical and administrative details of the formations of the file,” at the conclusion that legality “is not an inherent quality of certain disputes or even certain pieces of paper. Legality is instead, a quality with which the papers are endowed—retroactively.” As I will show in the following pages, it is in specific configurations that documents such as birth certificates, reports, and visiting logs become legal. Yet I also pay attention to how the production of the law intersects with unspoken forms of stratified reproduction that allow the maintenance of forms of inequality for poor families. In what follows, I remain circumspect in giving precise dates and locations to respect the anonymity of those involved.

A N I N T E G R A L FA M I LY D E V E L O P M E N T

The promotion of adoption as the best alternative for poor institutionalized children whose birth relatives are deemed unfit to raise them is part of a broader shift in governmental approaches to the family in Mexico. With the state’s adherence to international adoption conventions in the late 1980s and 1990s,3 and political shifts toward the right in the PAN governments of Vicente Fox (2000–2006) and Felipe Calderon (2006–12), as well as with the newly elected PRI government in 2012, the adoption of children has gained unprecedented attention as a means to both protect the rights of children and promote the importance of the nuclear family in the creation of citizens. In the 1990s, Mexican federal and state governments began to adjust existing codes to facilitate the “plenary” adoption (adopción plena) of vulnerable children. These newer reforms—which follow Euro-American understandings of adoption—define adoption as the juridical institution that allows children or disabled persons to become part of a new family as if they were biological offspring. As such, adoption has become, for the first time in Mexico, configured as an irrevocable status that extinguishes all previous kinship ties of the adoptee. The new laws stand in stark contrast to earlier, “simple” adoption provisions— derogated from the federal civil code only in 2013—in which adoption was defined as a contractual relationship between the adopter and the adoptee. This relationship did not sever bonds with the birth family and could be dissolved by such things as the ungratefulness of the adoptee. These reforms have in turn opened up new spaces from which the state can regulate the formation and dissolution of families. Following the guidelines of a new Social Assistance Law passed in 2004, the DIF is now in charge of coordinating all public and private social-assistance institutions in Mexico. As a decentralized public institution with its own patrimony and juridical personality, the DIF has been a central governmental apparatus in making the family the privileged unit through which “vulnerable” individuals can receive social welfare. In the

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case of adoptions, this brings together discursive practices that emphasize the need to save children—and the nation—from life-denying relationships and settings by shifting the burdens of care for vulnerable subjects to the nuclear family. As such, by promising a new life for children in families, adoption takes over from state institutions the obligation to turn children into useful citizens. These attempts to turn the family into a normalizing mechanism for institutionalized children have become an integral part of the promotion of legal and social policies for children. In this context, normalizing and biopolitical objectives (Foucault 1990) have supported the unquestioned value of the child’s life as an emblem of the nation’s futurity. As part of the continuum of governmental apparatuses with regulatory functions that incorporate norms and juridical domains into their ordinary work, the DIF’s forms of intervention have thus been differentiated according to social norms and assumptions about the superior value of children’s lives. Here, those families or individuals that cannot ensure the return of children in the form of valuable citizens (Foucault 2003, 257) are not entitled to parenthood. As Donzelot has pointed out, this brings together forms of assistance and repression for “the care and custody of children without families and of rebels against the family” (1997, 89). Through the following ethnographic passages, I will further explore how the production of legal evidence in adoption cases falls within a general field of normativity that presents institutionalized children’s birth mothers, in particular, as irresponsible and unfit to parent their children.

THE ALBERGUE MEETING

The meeting, held in the children’s toy library, started half an hour late, at 10:30 a.m. Except for the main lawyer who directed the event, there were only women in the room that morning. Sitting around adjoined red children’s tables were the albergue’s director, psychologists, therapists, lawyers, social workers, and a doctor. Counting me, there were twelve of us in all. Thirty-five cases—which included groups of siblings—were going to be discussed that day. In Mexico, the majority of children enter state albergues as part of a judicial investigation ordered by the Ministry of the Public Prosecutor (Ministerio Público). That is, children are placed under the “temporary” care of a state institution while a crime—such as child neglect, rape, sexual abuse, or family violence—is being investigated. Albergue meetings, such as the one I attended, are occasions in which DIF staff assess each child’s legal situation and monitor the status of the reports and investigations that are necessary to resolve their individual legal cases. This means, in part, deciding whether children will be sent to another, usually private, long-term orphanage; will be reintegrated with suitable family members; or can become candidates for adoption. Yet, to achieve an outcome that complies with the legal requirement to safeguard the “superior interest of each child,” careful techniques of timing and pacing must be observed in the production of the documents that will serve as legal proof.

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For a file to be considered “ready” to be sent to the Adoption Department, it needs to include a series of documents proving the child’s adoptability. Usually, files start with an identification and entrance sheet, as well as a copy of the preliminary juridical investigation prepared by the Ministerio Público. In the cases where children are placed in the albergue by their parents and family members, a signed form of “voluntary appearance” (comparecencia voluntaria) is also in the file. Social workers also take pictures, as well as footprints and handprints of all children, at the moment of admission. More-current pictures at the time of adoption are usually also added. These initial documents are supplemented with medical, psychological, developmental, and social reports that must be up-to-date if the child is to be considered a candidate for adoption. All these reports now follow standardized formats, and are signed and/or stamped by the respective professionals. Files also have to contain children’s birth certificates for children to be adoptable. Usually, files also include different “informative notes” addressed to the DIF’s attorney (procuradora) or the albergue’s director, describing children’s developmental needs or special situations concerning their birth families that could strengthen their adoption cases. Finally, all files need to include a “no-visits report” and a statement of abandonment or exposure (constancia de abandono o exposición) signed by the DIF’s procuradora. Once the file is in the Adoption Department, an adoption petition, or demanda de adopción, is prepared. It is placed in a new file together with information on the adopting couple—who are legally the petitioners—and documents from the child’s original adoption file. The adoption petition is based in the presentation of a number of “facts” and “proofs,” which are extracted from an adoptive couple’s dossier and children’s files. As such, this new adoption file also follows a preestablished format, or machote,4 which only requires filling in the personal information of each new couple and child. As Valverde (2003, 24) has argued, the selection of the correct format is strongly related to “the question of epistemological authority, since certain formats have a built-in tendency to empower certain knowers.” In these files, information about birth parents is avoided, unless it appears in the Ministerio Público’s juridical investigation, which has to be attached as one of the proofs. Here, in the creation of the child’s file, it is possible to see how government workers produce a category of adoptable children by facilitating conditions under which normative understandings about the family can become part of legal paperwork, in such a way that it delivers the outcomes seen as more suitable for children and adoptive couples. Let me focus on two cases that were discussed at the meeting. The first involved two siblings, neither of which had a birth certificate. One was a seven-year-old boy, the other a toddler girl. Their mother had just given birth to a third child in a state hospital. During the youngest child’s birth, the hospital staff had noticed the older sibling’s state of malnutrition and extreme poverty, and convinced the mother to sign the necessary legal paperwork to send the children to the DIF’s albergue while she regained strength. She had stated that she did not have any known relatives and was illiterate, unmarried, and

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poor. A month later, at the time of the junta, she was living in a women’s shelter in a nearby city with her newborn child and was unable to find work, but stated that she wanted to get her two older children back. Yet the albergue staff were suspicious of her moral standing, since she admitted that each child had a different father. The meeting members were reluctant to return the children to their mother, unless she—and I quote the lawyer—“showed interest, got a job with a day-care facility, and underwent surgery to avoid having more children.” In this case, the group agreed that what was needed was to delay the production of the children’s birth certificate until the legal time had elapsed for the children to be declared “exposed” (expósitos). For legal purposes, minors not directly relinquished by their guardians in a legally binding “voluntary surrender” need to be declared in “state of abandonment” (estado de abandono) or “state of exposure” (estado de exposición) in order to be placed in adoption. Legally, the difference between an expósito and an abandoned child is that the former has no known legal guardians, whereas the second does. In preparing such legal declarations, government workers focus on the documentation of family-member visits to minors held in social-assistance institutions. If no visits are recorded in the entrance guard’s log since the children’s admission or for a period of thirty consecutive days, a “no-visits report” can be issued. This supports the elaboration of a statement of abandonment or exposición, both of which can terminate parental rights and make children adoptable. Aware of the ambiguities of this law, government workers preferred to handle expósito rather than abandoned children’s files, sometimes omitting information about birth parents from birth certificates and other legal documents to assure a “cleaner” and “tighter” adoption file that could move faster and more smoothly through different bureaucratic instances and into the superior court. The less that files referred to birth parents, the more they could carry with them the force of the law. Here we see how waiting and timing are not only part of how subjects experience bureaucracies (Hoag 2011; Verdery 1996), but also part of how bureaucratic and legal documents are created. The kind of knowledge manifested in these files could be responsible for letting cases move quickly or slowly, smoothly or jaggedly, through the hands of diverse governmental authorities. In the case of these two siblings, waiting to elaborate the birth certificate until the “time of exposure” had elapsed gave state workers the opportunity to register them with “administrative” last names, by leaving the line for their parents’ names blank in the certificate. Without this data in the document, children were legally expósitos and had only “alleged parents” (presuntos padres) with no legal rights over the child, even in those cases in which the parents were in fact known to the albergue’s staff. The second case was that of a girl named Anahi. At the time, Anahi was two years old. Her mother had voluntarily brought her to the albergue because she feared for her daughter’s safety at her workplace. She was a trash scavenger, or pepenadora, and had just started a relationship with a new man. She had moved into a small room with him at his mother’s house, but the child was not welcome. She said she had planned to save money

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to build her own room and get her daughter back, but she had failed to visit her child regularly. “In this case we have to talk it through with the director,” the lawyer said, “for the good of the child, to see that, if the mother only comes to visit her sporadically, her visits are not registered in our log.” The mother does not even have a birth certificate for herself, he explained, and the child could be considered for adoption. He feared that if these measures weren’t taken, Anahi would be deprived of a “proper” family and end up growing up in the albergue. As a social worker commented: “That señora takes the albergue as her personal child-care facility. That’s all she wants!” Anahi’s mother was regarded as an irresponsible woman who put her own happiness with a man before that of her child. As I learned later through informal conversations, Anahi’s mother had a history in the albergue: her older baby boy had also been placed in adoption as an expósito some years ago. This fact, however, was not mentioned in any of the legal files and did not come to bear in any of the formal conversations. Since neither Anahi nor her mother had a birth certificate, there existed no legal relationship between the boy and Anahi or their mother; yet the albergue staff knew of the relationship, and evaluated the mother’s worthiness accordingly. For the staff, it was in Anahi’s best interest to be placed in a new family. Her birth mother did show up in the albergue after some more months to get her child back, but Anahi had already been placed in an adoptive family. In trying to protect the future life of Anahi, DIF workers had to make her mother invisible to the state and its own system of care. As such, the staff had to agree to avoid recording her sporadic visits (which, if recorded, would have prevented the “time of exposure” to run out) in order to assure that Anahi’s adoption could be approved smoothly, and that her file was expunged of “excessive” information about natal relatives that could delay her case. These cases elucidate how government workers’ goal to give children new lives in “better” families as soon as possible simultaneously involves purging legal files of excessive references—in this case, to birth mothers. As such, in order to liberate minors for adoption by turning them into the legal object of the parentless child, government workers ordinarily move across normative fields that exceed what we often take to be the stable limits of the law. State workers have to manage the particularities of cases, placing them into legal molds and frameworks that will do the work that is needed for them to ensure that the documents travel successfully through different government offices and deliver “justice” to children—at the expense, perhaps, of birth parents. For state bureaucrats the boundaries of law are not something fixed. Normative understandings that discredit the maternity of poor women can thus be invoked to authorize the need to expunge or depurate information from documents so that they can move forward in the legal system. As Mathews (2005) has pointed out in the context of the Mexican forestry bureaucracy, the state works not only through the production of legibility and visibility, as some scholars have argued (Scott 1998), but also by leaving things out of documents and claiming ignorance, which can help perpetuate forms of structural violence against the poor (Gupta 2012, 147). Here, what also allows documents to move effectively are the racialized and classbased understandings about birth parents that support social norms preventing them

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from gaining access to the legal mechanisms to contest such legal rulings in the first place. As these cases show, more than the management of rules and regulations, the government’s legal work is an ordinary struggle in which those in charge make use of diverse personal motivations and assessments—such as, for example, their sense of what the “best interest of the minor” might be and their readings of the wishes of their superiors—to produce particular legal effects (see also Das 2004, 238–39). As Luhmann (1982) pointed out, bureaucrats always already belong to a social environment that exceeds the organization (Brans and Rossbach 1997, 421–22). Here, unspoken norms about the unworthiness of poor mothers to raise their children as useful citizens become part of forms of “common sense” (Geertz 1983) that authorize certain documentary manipulations and understandings of the law. I now move to the second meeting in order to show how words are carefully placed in documents so that the documents adhere to a legal form that could create actionable cases.

T H E A D O P T I O N C O U N C I L’ S M E E T I N G

The Technical Adoption Council is in charge of determining the “viability” of couples’ applications and of matching legally liberated minors (menores liberados) with approved applicants or preassigning them to such applicants. The council is officially formed by a combination of DIF authorities: a president (the DIF’s general director), a technical secretary (the DIF’s procuradora), three councilors (the albergue’s director and the heads of the Adoption Department’s Social Work Unit and Psychology Unit), as well as the head of the DIF’s internal control organ (órgano interno de control). Yet members often designate alternates who will vote for them, or invite other government members or adoption specialists to participate without vote. The main points and results of this meeting are registered in official proceedings, or actas, signed by the members, which need to be carefully worded to make data uniform across other legal documents. As the media scandal mentioned at the beginning unfolded, the imperative to expunge actas of information about natal kinship grew stronger. What follows is an example of one particular meeting. Participants discussed the case of two siblings, around four and two years old, who had been sent to the albergue six months before as part of a judiciary investigation of parental neglect. At the meeting itself only a few people—the albergue lawyer and the head of the Adoption Department—were familiar with the children’s complete files. The other members based their decisions exclusively on data sheets that showed the basic information about each case. Responding to questions from some of the members who had not read the complete files, the albergue lawyer explained: In this case, who abandoned them is the mother, a young woman, twenty-two years old. [. . .] She does not have a stable life. She likes to go out to bars, drink alcoholic beverages, and she only returns home like around five in the morning. She did not legally register the children, either. The one that placed the complaint is the alleged person who took care of the children

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while the mother went out to the parties [a los bailes]. At the beginning, the mother tried to complete the paperwork [to recuperate the children], but then she stopped coming.

After listening to the lawyer and asking some questions, the procuradora asked what was known about the children’s father. The lawyer replied promptly: “This is precisely a situation where the alleged father is married. And he wants to have both the señora in one bedroom and his wife in another. . . . So we agreed with the mother that she should declare that it is her will to give up the children for adoption, to avoid all the cumbersome legal paperwork involved in retrieving her parental rights.” The head attorney added quickly: “Well, in this case the children are not registered as her own. . . . Look, you know what happens? Sometimes because we try to sensitize [these people], a lot of time is lost. . . . Well, what I mean is that those of us who are mothers are always looking after our children. . . . You see, if one of my children got lost, in five minutes I would already be crazy!” The head of the Adoption Department interrupted: “I have dealt with those cases, too, trying to [convince mothers to] do a voluntary surrender of the child, but [later] they repent, they say we are dealing arbitrarily with their children, that their children are fine with them.” The procuradora replied: Those cases are typical . . . but if we say, “Let’s give the mother another chance,” in two years—if we are still working here—we will see each other again and it’s going to be the same story: the children will be older, and the mother never came, and all that because we paid attention to her [por estarle haciendo caso]! Hey, she already committed a crime, she entrusted her children to others [los encargaba], she abandoned them, she went out to parties and didn’t give a damn about her kids [y le valían gorro sus hijos], and we are still trying to make her understand? . . . If the children have no birth certificate and we registered them [as expósitos], at this point there is no [legal] kinship tie with her. What will happen now? Well, we will give them in adoption!

That day the council members unanimously voted that the siblings should be placed in an adoptive family. Yet the exchanges leading to the final vote did not figure in the official proceedings, which consisted of the same copied-and-pasted information that was written down in the children’s adoption file—the one that would be sent to the superior court for judicial approval. In anticipation of “future moments in which documents will be received, circulated, instrumentalized, and taken apart” (Riles 2006, 18), the final version supported the image of an absent mother not available for her children. The knowledge about the siblings’ birth mother had to be managed, limiting the document’s contents to repetitive words. This move was also closely aligned with the need to produce “auditable” documents. In general, mentioning birth relatives was avoided as much as possible, and when that was not possible, the word for “alleged,”—presunta—was included before the kinship

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words. If children’s parents’ names did not appear in their birth certificates, the children had only alleged relatives, with no legal weight. Documents needed to be freed from any excessive information that might stop or hinder the efficacy of the law in procuring the social mobility of children and their insertion into a new, state-approved family. Once uniformity across different legal documents was achieved, and the criteria of their comparability in relation to similar files were met, they would be able to be integrated into a coherent adoption file and move into the superior court promptly, where a judge could finally approve the adoption. For children to move into a new family, the legal adoption files had to be able to move, too, and this required the careful wording of documents, to convey both the legal strength of the adoption procedures and the superfluity of natal kinship. Here we see how the form through which knowledge is produced in documents has the power of erasing or terminating relationships. Through these cases, the implementation of law emerges not so much as the sole outcome of rules or distant powers, but rather as a process or movement that is made possible by combining normative and commonsense understandings about institutionalized children’s parents as unworthy with legal imperatives to protect vulnerable minors. As Poole (2012, 84) has shown in the implementation of participatory budgets in Peru, law is not a transcendental expression of the state’s will, but a space of experimentation in which flexible understandings of norm and risk intervene. As I have shown here, the bureaucratic space of the DIF is also inflected by different normative understandings about children and families that authorize the elaboration of official paperwork.

FINAL REMARKS

I started this paper with a media adoption scandal in which a birth mother’s story threatened the legitimacy of the state institution charged with regulating adoptions and forced it to review its own “dead” archives. Later I moved to the DIF workers’ daily attempts at managing both the content of files and the form in which this content is presented, in order to focus on the materiality and work that go into producing an archive. By looking at the early stages of the elaboration of documents that serve as proofs in legal adoption files, my intention has been to focus on the movements and procedures (Das 2004; Poole 2004) by which the legal object of the parentless child is produced. In this task, my work draws on the growing literature on bureaucracy and documents (Feldman 2008; Ferguson 1990; Gupta 2012; Herzfeld 1992; Hull 2012b; Riles 2006; Verdery 1996), which has focused on the everyday workings of the state and the production of knowledge in its material formation (Hoag 2011, 81). Contrary to Weber’s ideal image of bureaucracy as a machinelike entity that should be characterized by “precision, speed, unambiguity, knowledge of the files, continuity, discretion, unity, strict subordination” (1978, 973), scholars have shown how government workers not only follow rules blindly and carry out decisions in a mechanical fashion but also engage in practical forms

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of creativity in producing documents by anticipating how the documents can generate desired legal results (Bernstein and Mertz 2011, 7; Hoag 2011, 81). As I showed, while bureaucrats’ knowledge of the general rules of the office is part of their “technical expertise” (Weber 1978, 958), this expertise extends into concrete knowledge of how to manipulate, extend, and break those very rules. As such, it is possible to see the tensions that emerge in government workers’ attempts to both achieve normative and “efficient,” rulegoverned bureaucratic practices and at the same time create the conditions under which normative ideals about the family and reproduction can be realized. Through the generation of a certain uniformity and generalizability across files, cases rerecord known kinship relations into a template that fits into the general form of the legal case. This involves truncating the ambiguities of kin relations that do not conform to the requirements of the legal case. The careful management of the content of the file is what will allow it to constitute itself into an actionable legal case, determining the legibility of the information and the limits of what can go into it. Here, legal outcomes are made possible precisely through the invitation of commonsense knowledge and understandings about birth mothers as unworthy and irresponsible. By exploring how government workers, rather than only using facts or applying rules, actively produce both legal evidence and the borders of the law itself, I highlight the power of documents to simultaneously extinguish and give life to relationships. Here, assumptions about who is entitled to reproduce and raise a family become absorbed into commonsense knowledge that supports the image of institutionalized children’s mothers as unfit parents. These understandings authorize the production of official paperwork that can move efficiently across state offices and produce adoptive families while erasing children’s birth kinship. The legitimacy of the state is constantly brought into contact with the domain of norms that sanction different valuations of life for children and birth mothers and that are central to governmental work and the implementation of the law. In fact, arbitrariness is central to how the state is able to give materiality to the law—by producing legibility and illegibility, opacity and transparency. Documents, as such, are both legal and personal pieces of work. As Deborah Poole has argued, particular styles of privatization (or corruption) are ordinarily located between ideals of justice and judicial processes (Poole 2004, 62). Paradoxically, as the state increased its advertisements about legal and transparent “plenary” adoptions, the specter of those left out—particularly birth mothers—became more and more apparent in the media.

N OT E S

1. Common parlance in Mexico refers to files that are no longer in use and have been stored indefinitely as constituting a dead archive, or archivo muerto. 2. In accordance with the state’s gendered imagination of its own division of labor, it is always the duty of the “first ladies” to head the DIF at the municipal, state, and federal levels. As such, the gendered and hierarchized organization of social assistance in the country, which

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developed during the seventy-one years of PRI (Institutional Revolutionary Party) rule (1929– 2000), has been intimately related to the creation of clientelist networks that would assure the maintenance of the party’s power. 3. In this period Mexico signed major Western international adoption and child laws, such as the Inter-American Convention on Conflicts of Laws Regarding Adoption of Minors (1987); the UN Convention on the Rights of Children (1991); and the Hague Convention on the Protection of Minors and Cooperation Regarding International Adoption (1994). 4. The word machote is interesting in that it simultaneously alludes to a standardized format or draft and to a masculine force.

REFERENCES

Bernstein, Anya, and Elizabeth Mertz. 2011. “Introduction: Bureaucracy; Ethnography of the State in Everyday Life.” PoLAR: Political and Legal Anthropology Review 34 (1): 6–10. Brans, Marleen, and Stefan Rossbach. 1997. “The Autopoesis of Administrative Systems: Niklas Luhmann on Public Administration and Public Policy.” Public Administration 75: 417–39. Colen, Shellee. 1995. “ ‘Like a Mother to Them’: Stratified Reproduction and West Indian Childcare Workers and Employers in New York.” In Conceiving the New World Order: The Global Politics of Reproduction, edited by Faye Ginsburg and Rayna Rapp, 78–102. Berkeley: University of California Press. Das, Veena. 2004. “The Signature of the State: The Paradox of Illegibility.” In Anthropology in the Margins of the State, edited by Veena Das and Deborah Poole, 225–52. Santa Fe, NM: School of American Research Press; Oxford: James Currey. Derrida, Jacques. 1998. Archive Fever: A Freudian Impression. Chicago: University of Chicago Press. Donzelot, Jacques. 1997. The Policing of Families. Baltimore, MD: Johns Hopkins University Press. Feldman, Ilana. 2008. Governing Gaza: Bureaucracy, Authority, and the Work of Rule, 1917–1967. Durham, NC, and London: Duke University Press. Ferguson, James. 1990. The Anti-Politics Machine: Development, Depolitization, and Bureaucratic Power in Lesotho. New York: Cambridge University Press. Foucault, Michel. 1990. The History of Sexuality. Vol. 1. New York: Vintage Books. ———. 2003. Abnormal: Lectures at the Collège de France, 1974–1975. New York: Picador. Geertz, Clifford. 1983. Local Knowledge: Further Essays in Interpretive Anthropology. New York: Basic Books. Ginsburg, Faye, and Rayna Rapp. 1995 “Introduction: Conceiving the New World Order.” In Conceiving the New World Order: The Global Politics of Reproduction, edited by F. Ginsburg and R. Rapp, 1–18. Berkeley: University of California Press. Gupta, Akhil. 2012. Red Tape: Bureaucracy, Structural Violence and Poverty in India. Durham, NC, and London: Duke University Press. Herzfeld, Michael. 1992. The Social Production of Indifference: Exploring the Symbolic Roots of Western Bureaucracies. Chicago: University of Chicago Press.

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Hoag, Colin. 2011. “Assembling Partial Perspectives: Thoughts on the Anthropology of Bureaucracy.” PoLAR: Political and Legal Anthropology Review 34 (1): 81–94. Hull, Matthew. 2003. “The File: Agency, Authority, and Autography in a Pakistan Bureaucracy.” Language and Communication 23:287–314. ———. 2012a. “Documents and Bureaucracy.” Annual Review of Anthropology 41:251–67. ———. 2012b. Government of Paper: The Materiality of Bureaucracy in Urban Pakistan. Berkeley: University of California Press. Latour, Bruno. 2010. The Making of the Law: An Ethnography of the Conseil d’État. Cambridge: Polity Press. Levi, Ron, and Mariana Valverde. 2008. “Studying Law by Association: Bruno Latour Goes to the Conseil d’État.” Law and Social Inquiry 33 (3): 805–25. Luhmann, Niklas. 1982. The Differentiation of Society. New York: Columbia University Press. Mathews, Andrew. 2005. “Power/Knowledge, Power/Ignorance: Forest Fires and the State in Mexico.” Human Ecology 33 (6): 795–820. Nuijten, Monique, and Gerhard Anders, eds. 2007. Corruption and the Secret of Law: A Legal Anthropological Perspective. Hampshire, UK: Ashgate. Poole, Deborah. 2004. “Between Threat and Guarantee: Justice and Community in the Margins of the Peruvian State.” In Anthropology in the Margins of the State, edited by Veena Das and Deborah Poole, 35–66. Santa Fe, NM: School of American Research Press; Oxford: James Currey. ———. 2012. “Corriendo riesgos: Normas, ley y participación en el Estado neoliberal.” Anthropologica 30:83–100. Riles, Annelise, ed. 2006. Documents: Artifacts of Modern Knowledge. Ann Arbor: University of Michigan Press. Rose, Nikolas, and Mariana Valverde. 1998. “Governed by Law?” Social and Legal Studies 7 (4): 541–51. Scott, James. 1998. Seeing like a State: How Certain Schemes to Improve the Human Condition Have Failed. New Haven, CT: Yale University Press. Valverde, Mariana. 2003. Law’s Dream of a Common Knowledge. Princeton, NJ: Princeton University Press. Verdery, Katherine. 1996. What Was Socialism, and What Comes Next? Princeton, NJ: Princeton University Press. Weber, Max. 1978. Economy and Society: An Outline of Interpretative Sociology. Edited by Guenther Roth and Claus Wittich. Berkeley: University of California Press.

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5 TRANSNATIONAL ADOPTION AND (IM)POSSIBLE LIVES Eleana Kim

“Let’s throw off the disgrace of being the ‘orphan exporting country’!! Oppose overseas adoption. Our babies [raised with] our own hands!” I signed the petition and tied a colored bandana around my neck in a show of solidarity with the Korean birth mothers and transnational Korean adoptees who had gathered for this demonstration. We were at a subway station in central Seoul, South Korea, to protest the system of overseas adoption, which had been ongoing since 1953. That the women had filtered a discourse of reproductive rights through nationalist slogans was an intriguing and evocative strategy. These women, in their forties and fifties, had sent children overseas in the 1970s and ‘80s, during the largest wave of South Korean adoptions, and their phrases resonated with the political discourses from those decades, when adoptions first became associated with national shame and then became a harsh blight on the nation’s international reputation as an economic miracle and development success story. It was August 2007, during the fourth international Gathering of Korean Adoptees, which brought roughly five hundred adult adoptees from fifteen different nations in North America, Western Europe, and Oceania to Seoul. During the various workshops and breakout sessions, activist adoptees canvassed other participants to support this demonstration planned by a newly formed group of activist birth mothers known as Mindeollae (“Dandelions”). These middle-aged and older women had met each other through the work of an adoptee filmmaker who had been interviewing women who had sent children overseas for adoption. As they shared their stories of regret, sadness, and injustice, they gained confidence in telling their stories publicly, and began to mobilize

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so that young women today would not have to suffer the same emotional and psychological traumas they continued to endure. I arrived at the protest with a group of adoptees, following a workshop that examined the political economy of international adoption. We had left one person behind, however: a recent college graduate named Ben, whose Korean birth mother was a main organizer of the event. Before we departed the workshop location, I lingered to ask Ben whether he would join us, but he was seemingly unable to move down the hallway through which the rest had departed. When I asked him whether he would come, he said that, as much as he wanted to support his birth mother, he felt that it would be “negating [his] own existence” to attend an “anti-adoption rally.” His literal paralysis emerged from his simultaneous sense of kinship obligation to support his Korean mother and a profound sense of existential risk. Ben eventually came to the protest site to greet his birth mother, but he didn’t wear a bandana or brandish a sandwich board with a slogan such as “Korean babies not for export” or “End Korean adoption,” as did the other adoptees. He came only to greet his mother and to be introduced to her friends, and left soon afterward. I was struck by Ben’s statement, and the powerful sentiments that informed it. Why was being “anti-adoption” so threatening to his very sense of self? How can problematizing adoption entail such existential risks? These sentiments are not unique to Ben, and, indeed, some adoptees might have diagnosed Ben as needing to liberate himself from false consciousness regarding adoption as an unproblematically ethical and moral practice. Indeed, the most politically active adoptees I knew agreed that a process of “separating” adoption as a political and economic system from the “personal or emotional experience” of kinship was a necessary step. Adoptees had to confront the fact that their political opposition to adoption as a stratified, raced, and gendered system would be an affront to their adoptive parents or interpreted as a rejection of the relatively privileged life they had led in their Western, middle-class families. Amy, a Korean-American adoptee activist, argued that the inability to “separate” was the reason that “[adoptee] groups fall apart when they get political. . . . People sometimes have almost a violent reaction to some of the stuff that’s going on with us [activist adoptees] because it’s really hard for them—for us also—to separate the emotional from what we think is political.” This separation of the emotional from the political, however, is precisely what was repaired at the site of the rally. Adoptees and birth mothers interacted as if they were related, with the older women and adoptees creating bonds of solidarity and kinship through mutual recognition of their respective losses. Their solidarity was premised on a sense of shared victimhood at the hands of the indifferent and misogynistic South Korean state, which privileged national security and economic development over the welfare of poor families, women, and children. At the rally, reuniting the emotional and the political granted affective potency to the event. If separating the emotional and the political is necessary for activist adoptees to articulate their progressive views to themselves and their adoptive kin, reuniting with actual and fictive Korean kin permits activist adoptees to reconnect emotional trauma and political injustice. Especially when

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unethical circumstances are revealed, in which children were stolen, kidnapped, or illegally relinquished, or when gendered forms of violence and mothers’ disempowerment contributed to children’s abandonment, adoptees closely identify with the pain, loss, and guilt of their birth mothers and connect those feelings to the political economic contexts and social inequalities that made South Korea’s the largest and longest international adoption program in the world. This kind of cathexis, however, was not available to Ben. Even if he were to separate the emotional from the political in the abstract, at the rally they were reconnected in the very body and memories of his birth mother and others who had come out of the shadows to publicize their secrete shame and traumatic pasts. Furthermore, Ben did not feel as if he had lost anything by having been adopted, and to acknowledge the pain and suffering of his birth mother and their separation through adoption would, in his mind’s calculus, require him to “negate” his life as a privileged suburban kid who studied abroad in Japan and was excited to spend more time in South Korea. His relationship with his birth mother was not founded on a sense of loss and restitution, but was a supplement to his already full and satisfying life as an adopted person. It gave him an opportunity to learn more about Asian graphic novels, an obsession that had led him to study in Japan, and it offered a chance for him to learn Korean, as he was already fluent in Japanese. Years later, Ben’s words were echoed to me by Brigitta, a Korean adoptee in Germany who had, after some encouragement from a friend, decided to contact her adoption agency for more information about her past. The European agency wrote her back informing her that it had discontinued its work in international adoption because it felt that adoption could no longer be considered to be in the best interests of the child. Brigitta was shocked and confused. As she explained to me, “They said they had discontinued adoption because they did not think it was right. It was not a good thing––it was a bad thing. . . . I just couldn’t understand why they would write this to me. It was like negating my existence in some way.” Brigitta had complicated adoptive-family relations, with many siblings, divorces, stepparents, and a peripatetic mother, yet adoption for her was simply a fact of life. She had been found as an infant with no identifying information and was adopted soon afterward. Now, married and with two young children, she doubted whether she would have the time or resources to travel to South Korea to seek out more information. For both Ben and Brigitta, adoption’s shifting moral and political values destabilized their sense of self, opening up a gap between adoption as a particular mode of creating kinship ties and family bonds, and adoption as a generalized system of circulating children in a global economy. If adoption was not “good,” but “bad,” then they should never have been adopted, and their very lives risked becoming unhinged and canceled out in a fundamental way. The moral logics of adoption have long depended upon a particular set of associations between humanitarianism, orphan rescue, and liberalism that have been unraveling in recent years, especially as adoptees have been returning to Korea in increasing numbers. As critical discourses of adoption produce topsy-turvy moral logics in

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which what was good is now bad, some adoptees like Ben and Brigitta find themselves unmoored from taken-for-granted certainties.

(IM)POSSIBLE LIVES

In this chapter, I explore the “(im)possible lives” of transnational Korean adoptees whose quests for self-knowledge and adoption histories underscore Janet Carsten’s claim that the “history of kinship is always, among other things, a political history” (2007, 24). It has become commonplace and expected that adult adoptees will travel to their country of birth to seek out information about their pasts and to search for relatives. For adult Korean adoptees, who constitute the largest and oldest cohort of internationally adopted people in the world, these movements to and from the “birth country” invariably generate new questions more numerous than the answers they provide, since the quest for biological origins and biographical continuity more often than not reveals the contingency of their life trajectories, the incommensurability of past and present, and the disjunctures between the lives they have lived and other possible biographies. These other possible lives are like the “phantom lives” that Elizabeth Honig (2005) writes of, referring to the narratives and fictions that adoptees and adoptive parents tell about the origins of the child. As Honig writes, phantom lives are “lives defined as possible but unlived.” She continues: “While the recognition that their lives could have been different is common to many transnational adoptees, the story each tells himself or herself about what that difference would have meant is intensely personal. The narratives are often fiercely owned and held on to: an individual dispossessed of his or her past can at least have control over a narrative of possibility.” Like the phantom limbs of amputees, phantom lives are characterized by a “yearning for something that no longer exists” (215). The phantom lives of adoptees, however, are also marked by impossibility and haunted by the specter of social death—of having lived an abject, better-off-dead life in South Korea as a beggar or a prostitute, of literally dying as a thrown-away child, or of dying at one’s own hands, for adoptees who have attempted to commit or have committed suicide. These alternative scenarios are what Laurel Kendall (2005) calls “imagined antiautobiographies.” Shaped in relation to dominant Euro-American kinship ideologies that continue to privilege biogenetic relatedness, Korean adoptee subjectivities are also constrained by and respond to received narratives of adoption as the rescue of abandoned orphans, and the closely imbricated moral logics and humanitarian rationalities that accompany those narratives. The (im)possible lives of my title describes the simultaneous and dialectical relationship between the parallel lives and abject deaths of adoptees, where phantom lives and imagined antiautobiographies converge. Adoptees I met, especially those who had been adopted at older ages, would have identified with the idea of phantom lives, but even as these narratives are “fiercely owned and held on to,” they have increasingly become collectively imagined by a self-consciously global “community” of adult adopted Koreans that has taken shape online and in person

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through dozens of adult Korean adoptee associations and, most important, through the triannual international “Gathering” conferences. At the first Gathering conference in 1999, which convened more than four hundred adoptees in Washington, D.C., adoptees began to vocally claim ownership over their own experiences and feelings, largely in reaction to the infantilization they perceived from nonadopted attendees at the conference, including adoption professionals, adoptive parents, and state officials from South Korea. Since the 1999 conference, a “for us by us” ethos of self-empowerment has come to define the Gatherings and other adoptee world-making activities (Warner 2002), in which “affective self-determination” (Eng 2010, 123) is a key aspect. Affects of “loss,” emerging out of experiences of racialized difference, refigured nuclear kinship, and cultural alienation, provide the central points of collective identification and affective self-determination in adoptee actual and virtual spaces. The stories that adoptees share are woven through with loss, such that the word itself now stands in for a host of affectively powerful social ties that bind adoptees across multiple vectors of difference, informing their practices of identification as “Korean adoptees.” The multiple dislocations and disconnections––from original family, nation, culture, language, ethnic community, and social memory––that adoptees have identified as defining their common experiences constitute an inalienable aspect of their lives as displaced persons and “unnatural” kin. This inalienable tie, which I refer to as “contingent essentialism,” is the basis for their identities as “Korean adoptees” (Kim 2010). Loss is the catchall for these disconnections, and encompasses the diminished personhood that many adoptees experience as nonwhite others in monoracial families and communities, and as racialized minorities who lack multicultural capital in a globalized world. In other senses, however, “loss” can only approximate what some call “a hole in the heart,” “the glass at half empty,” being an alien,” or “beyond words.”

I M A G I N E D A N T I A U TO B I O G R A P H I E S

The figure of the orphan has been a hallmark of transnational adoption since its origins in the aftermath of World War II, and its institutionalization following the Korean War (1950–53).1 Referred to as “orphans,” or even “war orphans,” well into the 1970s and even 1980s, Korean adoptees in their everyday lives and in mainstream representations were framed in humanitarian terms for decades after the war. In addition, legal terminology in U.S. immigration law reinforced the idea that these children were “orphans,” even as the legal category of “eligible orphans” ensured that children had been consensually relinquished by at least one parent or a legal guardian. By the 1980s, it became clear that these children were no longer “war orphans,” and a developmentalist logic set in, framing South Korea as a “developing nation” that had no choice but to send away its poor children. Those two decades witnessed the largest number of children sent overseas from Korea (more than one hundred thousand), even as the “miracle on the Han,” forcefully led by a series of authoritarian dictators, was propelling South Korea into global modernity as one of the “Asian Tiger” nations.

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As adult adoptees began returning to Korea from the late 1980s and began actively networking with each other in the late 1990s, the sudden and widespread realization that they were not literal orphans laid the groundwork for a broader critique of the semiotic violence of the “orphan.” Many who were involved in adoptee self-empowerment and community organizing actively rejected the infantilizing and inaccurate label, whether in Korea or in the West. Adoptees discussed how the “orphan” represented the “silencing” and erasure of their pre-adoption pasts, processes that were part and parcel of the “affective embargo” (Eng 2010) of family life that restricted their affective self-determination. Yet adoptee subjectivities are still deeply inflected by the inherited logics of the humanitarian war orphan and the developmentalist social orphan, which frame adoptees as “lucky.” Thus for adoptees like Ben, questioning the legitimacy of adoption as a system also entails an interrogation of kinship, love, and the happiness that comes with adoption into a nuclear family—which can result in feelings of guilt, betrayal, or even self-negation. The four hundred adoptees at the first International Gathering of the First Generation of Korean Adoptees in 1999 were divided up by age cohort, and in groups of twenty to forty they discussed various aspects of their adoption experiences. A striking commonality among the first wave of adoptees—those who were adopted in the 1950s and ’60s, and many of whom were of mixed race—was the discourse of gratitude expected, if not demanded, by adoptive parents. As one adoptee from the 1950s told me, Among the oldest ones—there was some deep sadness in that group—a lot of them were describing that their parents adopted them saying that they had saved them. . . . [There] was a lot of missionary zeal: “God told us to adopt you,” kind of thing. . . . These are people in their forties at this point––saying that there wasn’t a day in their lives that their parents didn’t say to them, “You should be grateful we adopted you, you would’ve been a prostitute or you would’ve been a beggar or something like that. You should worship the ground I walk on.”

The “prostitute” or the “beggar” were common “antiautobiographies” (Kendall 2005) provided by adoptive parents, but also taken up by adoption-agency social workers—and by adoptees themselves, when they attempted to weigh what their lives might have been had they not been adopted. The injunction to be grateful for being saved from a life of abjection, however, was considered by most adoptees to be oppressive, especially when it came from their own parents. Adoptees of later waves—those who were not literally “saved” in the postwar years—also echoed the idea of the abject life, but also frequently spoke in terms of present-day opportunity (Lo 2006). If the humanitarian orphan is saved from certain death or abject exploitation, the developmentalist orphan is saved in order to be given a “better life.” As one Belgian adoptee who was in his thirties in 2005 asked me, “Would you stay in an orphanage and live like a bum and have no future, or choose to be in a family and receive everything I have had?”

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The hypothetical, counterfactual question posed by this adoptee was presented as a commonsensical, pragmatic choice between having a life of “everything” and a life of a “bum” with “no future.” Framed in this way, adoption is actually a nonchoice between a good life and a life of social death. Indeed, this adoptee, like other male adoptees I knew, would often indulge in black humor about being thrown out with the garbage as an infant and being “lucky” for having been found by the garbage collector. The absurdity and mock gratitude expressed in a joke like this encapsulates the (im)possible lives of adoptees, for whom any phantom life they might imagine is laced with resentment toward the nation and Koreans for throwing away their children and the specter of destitution or death. These sentiments dovetail with institutionalized rationales that reinforce the humanitarian and developmentalist moral logics of adoption, shaping the affective horizons and political imaginaries of adoptees who are encouraged to feel “grateful” for the life of possibility and freedom that adoption permitted them. Motherland tours sponsored by adoption agencies frequently bring adoptees to orphanages and homes for unwed mothers, thereby providing historically disembedded narratives or “imagined antiautobiographies” (Kendall 2005) that encourage adoptees to connect their adoption origins from a generation earlier to what they see today. These become opportunities for adoptees to witness firsthand and to project directly onto the children and women they meet (but with whom they cannot communicate directly) how differently their lives might have turned out if they had stayed in Korea. These visits may be seen as extensions of the “euphemized violence” (Anagnost 1997) to which Korean birth mothers were subjected—the nonchoice between adoption or something worse for themselves and their children. An adoptee from Minnesota who went to Korea on an agency motherland visit described how the Korean social worker told the participants after a visit to an orphanage, “Don’t you feel lucky? That could’ve been you.” Yet the visit had a different effect on the adoptee: rather than making her feel grateful for having been saved from the fate of the children at the orphanage, it provoked a desire for other alternatives. As she told me, “I just wish it wasn’t always a choice between being adopted or being in an orphanage.” Thus, returns also open up questions about other possibilities, if not for the adoptee’s own life, then for the hundreds of infants who leave Korea annually for adoption to other nations. For some adoptees who were adopted at older ages, returns to Korea can be disorienting as they attempt to reconcile their present and past lives. For Amy Frank, who was in a master’s program in political science when I met her in 2005, returning to Korea to live and to meet her birth parents for the first time since she was six years old undermined her sense of moral certitude. Amy had been active since high school in adoption-related activities, starting a memory-book business for other adoptees with her twin sister and participating in adoptee organizations, as well as appearing on adoption-agency information panels for prospective parents, which is where I first met her. Amy’s memory books were projects of self-authorship, giving her a way to make sense of her adopted identity by taking bits of her past from her adoption records and her own phantom lives and piecing

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them together into the coherent frame of a book. This project of kinship memory and selffashioning (Carsten 2007) even became part of a family-based entrepreneurial venture. Yet the work of kinship memory did not prepare her for the confusion and ambivalence that she experienced when she first returned to Korea in her early twenties: It’s a very strange thing for me. [. . .] I remember walking down the street, and thinking the last time I really lived in Korea, I had a different name, a different family. [. . .] I just spent a lot of time trying to figure out, now that I was back in Korea and living there for a while, how I picked back up or if I picked back up. If I’m still Amy, still Eun-joo, or where those two meet. At [the adoption agency], my social worker always calls me Eun-joo––that’s how she knows me, in my case. It’s really weird, so many people calling me Eun-joo, things like that. It was very, very—just, a lot of things to think about. So when I came back, I had a lot of different ideas that I just never even considered.

The project of the memory book, depicting a smooth transformation of the adopted child, from Eun-joo to Amy, from Korean orphan to American girl—which is designed to preempt this kind of identity confusion—was thwarted by Amy’s return to Korea. Phantom lives opened up onto (im)possible lives––the possibility of “picking back up,” but also the question of whether or not it was possible: “[i]f I’m still Amy, still Eun-joo, or where those two meet.” Along with the indeterminacy, incoherence, and ambiguity opened up by her return, confronting her past life as Eun-joo and attempting to reconcile two incommensurable histories and lives, Amy’s feelings about adoption also began to shift dramatically: I don’t know how I feel about adoption. At this point in my life the ideal would not be adoption. I feel awful about saying that. Maybe it’s because of the feeling of loss I feel toward my birth family. Not that my life is horrible or difficult. It’s weird. I’m trying to think of a P.C. way to configure my thoughts on adoption, because I feel horrible saying that. My parents did a very good job. [. . .] At the baby-reception home, I don’t want them to leave. I know it’s a naive thought. I know adoption is good. My family is fabulous. [Adoption] gives children families. At the same time I think I’m still frustrated with the idea of loss and the idea of odd motivation of people who adopt. I don’t understand fully. Why are you adopting? Do you want to feel better about yourself?

Amy struggled with the fact that her life is not “horrible or difficult,” and with the fact that she felt “horrible” admitting that she had mixed feelings about adoption. Asserting that her parents did a “good job” and that “adoption is good,” she nevertheless could not reconcile this with “the idea of loss.” The notion that her parents’ happiness is predicated on her own feelings of loss led her to question the egocentric motivations of adopting parents, and to a personal struggle over the moral values of adoption. Like many adoptees, Amy eagerly participated in the reproduction of adoption as a system of finding

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“forever families” for children in need, as a volunteer in a baby-reception center for the adoption agency that placed her in the United States. Yet, rather than reproducing the happy family that adoption promises, the experience, in conjunction with her reunion with her birth parents, provoked the opposite effect: When I went to Korea it all totally exploded, in my face. [. . .] I was also going to [my adoption agency] every week, to the baby-reception center, and that was actually very draining. It was a great experience, I love going there, I want to go back there . . . it’s just those times, when no one else is around, nurses are doing something, you’re holding one of the babies, and you just know, not that they’re going to have a bad life, or anything like that, but you know the possibilities, or the issues, or the positive and negative possibilities of their life, the kinds of questions they’re going to ask, ten or fifteen years down the line. So that really got to me, and being in Korea and trying to figure out a lot about my life if I had stayed there.

Given that she had been a “model” adoptee in her home community and had a close relationship with her parents, Amy’s ambivalence was more marked than that of other adoptees who were less attached to their parents and may have even been estranged from them. Thus, the relative stability or strength of her kinship relations to her adoptive family—that is, whether her “adoption experience” was “positive” or “negative”—is less significant to her questioning of the received moral values of adoption than are the experiences she had returning to Korea. Like Ben, the adoptee who couldn’t imagine participating in a protest about transnational adoption, Amy struggled to articulate her feelings of ambivalence about adoption (“not that my life is horrible or difficult”) within the prevalent moral discourses that frame the adoptee’s “good life” with “good parents.” Amy felt “horrible” saying that adoption was not the “ideal,” because in doing so, like Sara Ahmed’s “affect alien,” she would be the one who “converts good feelings into bad and, as it were, ‘kills’ the joy of the family” (Ahmed 2010, 49). For some adoptees, “coming out” as an adoptee was like being the “killjoy,” disrupting the positive family dynamic, which required them to be “happy,” “grateful,” or “well-adjusted.” As a thirty-year-old queer adoptee in Los Angeles told me, coming out to her adoptive family as a lesbian was nothing compared to coming out to them as a transracial adoptee—that is, asserting the significance of her adoption and Korea to her personal biography, and no longer denying her identification as a racialized person in a racist society. Coming out is risky for adoptees because it entails the disruption of multiple familial myths of the as-if genealogical family, the questioning of the idea of love triumphing over racial difference the notion of the well-adjusted adoptee. Indeed, asserting the adoptee’s difference from the adoptive family entails “bad feelings” that can feel like a betrayal, suggesting that parental love is inadequate for overcoming the dynamics of racialized power, imperialism, and gendered violence that haunt transnational transracial adoption. For adoptees who begin to question the power relations that transnational adoption encodes, even questioning the moral value of adoption as a humanitarian good or liberal progressive

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act can be destabilizing and threatening to the self. Amy’s experiences with the infants being sent for adoption situated her within what has become a transgenerational, biopolitical project. Imagining her past and the children’s future in one spatiotemporal plane, however, introduced a sense of emotional and ethical vertigo. Many adoptees enjoy the experience of caring for babies who are going to be sent for adoption because it “closes the circle,” allowing them to participate in the social reproduction of adoption as a system that they believe to be a humanitarian good. Yet for Amy, this experience was destabilizing and opened up a host of ambivalent feelings around the “positive and negative possibilities” of the children’s lives, leading to a reflection on her own life “if I had stayed [in Korea].” This moment of “moral breakdown” (Zigon 2010) led Amy to seek out answers about the history of adoption and its political economy, and to become a founding member of Adoptee Solidarity Korea (ASK), the first adoptee organization in South Korea to oppose transnational adoption as a social-welfare solution for out-of-wedlock children.

BIOPOLITICAL CONSCIOUSNESS

Since 1999, the international Gatherings have served as important counterpublic spaces where adoptees constitute for themselves and project to various dominant publics a coherent “adult Korean adoptee network.” Until recently, in these and other adoptee spaces of therapeutic talk and community building, common expressions of loss were encouraged as modes of public intimacy, yet more “negative” emotions of anger or activism were proactively marginalized as fractious. A more recent development has brought “unhappy” affects of resistance into acceptability: extending individuated affects of grief and loss into collective ones of anger and mobilization, adoptees are connecting their experiences to those of other disenfranchised Koreans, the generations of women and men that may have been their own relatives. In these narratives, what has been “lost” is not just natal family, original culture, and nation, but also social belonging and shared history. Since the founding of ASK in 2003, adoptee activists in Korea have been actively mobilizing around reproductive politics in South Korea, and a remarkable convergence of domestic adoptive families, unwed mothers’ groups, and birth mothers have created new kinds of political collectivities and genealogies of South Korean biopolitics, which include adoptees as one of many subjugated histories of South Korean modernity. Not only are adoptees beginning to deconstruct the orphan in their personal lives, learning that they might have histories and existing social relations in Korea; they also are historicizing and politicizing the figure of the orphan as part of an ideology that made adoption as a biopolitical technology possible. Anders Müller had been placed in a South Korean orphanage temporarily at the age of three and then, without parental consent, adopted to Denmark in 1977. In an op-ed that was published in an English-language Korean daily, he described his rapid and

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successful adjustment to his family in Denmark. As for many adoptees, however, a sense of loss and phantom lives haunted him: What happened to my family in Korea? Why was I adopted? My adopted parents having no basis for understanding what I was going through just told me “Korea is a very poor country. Your family was probably poor, and the only reason they gave you up for adoption was probably because they only wanted the best for you.” So the years went on and I continued to accept this story, but the questions and the feeling of loss and pain never went away. I went through more than 12 years of birth search before I found my family. Since then I have been in Korea almost every year to visit my family and familiarize myself with Korean society. In getting to know my [Korean] family’s history, and in digging into Korean economic history, I started to question the conventional narrative of a poor country which had no option than sending children overseas for better lives. Rather, my understanding of overseas adoption has now come to the point where I see adoption as a political choice to address the social problems that proceeded from rapid economic transformation. (Müller 2012, n.p.)

Instead of viewing himself as a beneficiary of adoption migration, he reorients the narrative from an individual story of “good luck” to a collective one of injustice, exploitation, and dispossession, arguing that the children sent for adoption “were one of many groups who had to sacrifice in the name of industrialization. . . . [W]e were certainly too young to realize our sacrifice, or to make ourselves heard, but we have grown up and we have a voice now. For a long time, I was focused mostly on adoption issues, but adoption justice is not an isolated struggle. It is connected to all the other struggles of marginalized groups in this country” (Müller 2012, n.p.). In this op-ed, Müller—who is also a Ph.D. candidate in international development and environmental policy, as well as a food-sovereignty activist—explicitly connects his personal adoption history, and that of thousands of others who were sent during the height of South Korea’s “economic miracle,” to South Korea’s developmentalist past. Müller and other adoptees who have been engaged in activism in South Korea demonstrate an emergent biopolitical consciousness that connects adoptees to South Korea’s modern history; to the struggles of disenfranchised Koreans, especially poor and working-class women and unwed mothers; and to the histories and social relations erased and obscured by the myth of the orphan. Adoptees are now supporting unwed mothers’ groups who actively resist pressures from adoption agencies and other “helping” institutions that would rather see them relinquish their children for overseas adoption. They have successfully lobbied the South Korean government to reform adoption legislation to support family preservation and adoptees’ rights to information. The biopolitical consciousness among some adoptees emerges out of an affective disease, but also out of psychic struggle over competing moral economies. Their narratives

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and affective states point to the powerful ways in which biopolitics structure how the good life can be imagined, and also how the promise of the good life can constrain political imaginaries. Adoptees may be among the most privileged migrants in the world, yet their experiences of displacement open them up to new social relations based on the struggles that they were not able to live, the very social conditions that they were rescued from. Against the “lucky” paradigm of the good life that is premised on (neo) liberal notions of self-realization and the commodification of social relations made possible by the freestanding orphan, adoptees like Müller suggest that in being “saved,” they lost not only a connection to birth family and birth culture, but also a connection to a social body––generations of Korean women and men and their own pursuits of the good life. Yet Müller and other adoptees who have developed a well-considered discourse around the politics of adoption and who advocate for a decolonization of adoptee subjectivities would not say that their losses have been solved through political enlightenment. Rather, following Judith Butler, “loss becomes condition and necessity for a certain sense of community, where community does not overcome the loss, where community cannot overcome the loss without losing the very sense of itself as community” (2002:468). Being a part of the “Korean adoptee global network” is often framed as part of a therapeutic journey in which individual losses can be articulated into a collective body, helping adoptees to acknowledge their shared traumas and also to move beyond them. Adult adoptees’ counterhistories now provide a location in which adoptees’ (im)possible lives gain political purchase through alliance and solidarity with activist birth mothers and progressive South Koreans. After two decades of social networking among adult Korean adoptees, in which questions of cultural identity and belonging constituted the basis for adoptee community building, more recent adoptee practices and discourses foreground a collective sense of injustice, informed by postcolonial politics and a critique of state biopower. Adoptee loss has become politicized, and the impossibility of restoration and a full accounting, which in the past granted a tragic pathos to adoptee subjectivity, now fuels a resistant politics in which adoptees’ relatedness to the nation is grounded in a generational history of collective suffering.

CONCLUSION

The reparations and commensurations that adoptees often seek through returns to Korea, the search for relatives, and political activism are organized around origins of different kinds—whether biological, cultural, or social-political. In this way, these agentive practices are also attempts to fashion coherent biographies and histories. I conclude with a discussion of Korean adoptee artist Anna Jin Hwa Borstam’s performance piece Missing O, because it suggests alternative ways in which adoptees convert their experiences of loss into agentive modes of expression that do not seek to repair fractured histories or

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biographies, but rather dwell in the space of (im)possibility, marked by alienation, incoherence, and incommensurability. Missing O was documented in Luxembourg in 2010. In the video of the same name we see, from a far distance, a small figure in a lush, park-like setting, standing unsteadily on the side of a slope intercut by a pathway that overlooks a tree-lined road heading off into the distance. The figure (who is Borstam) slowly raises large white letters over her head; she raises each one, holding it for a few seconds before putting it down to pick up the next one. We watch her in real time, and are forced to make out the words at the pace of her deliberate cadence, letter by letter: I-M-T-O-S-A-D-T-O-T-E-L-L-Y-O-U. The video ends after she picks up her stack of letters and walks away. This brief performance provides an experience of suspense, revelation, anticlimax, and pathos as, the moment we figure out her “message,” we realize that the painfully slow utterance (re)iterates the speaker’s aphasia, her inability to communicate her inner thoughts and feelings, even at this safe distance. The artist is singularly alone in the natural yet unnatural landscape of the park, “missing” something that is only partially linguistic (the letter O). The message conveys innocence, and, lacking punctuation or proper spelling as it does, could be a missive from a child who is perhaps entering into the symbolic and recognizing the fundamental lack that will organize her subjectivity. It also calls forth the lack that organizes language and desire. I locate the emotional power of this piece in its simplicity and the slow revealing of the letters, which invites us into the performative co-construction of meaning—an unfolding that circles back and negates itself to convey an irreparable condition of sadness beyond words. The extreme wide shot miniaturizes Borstam, granting the viewer an omniscient perspective, but also frustrates the desire to see more: Borstam is reduced to a tiny figure in the landscape, who escapes gendered, racialized, or other categorical distinctions. Moreover, the large cut-out letters and the wide camera angle produce a paradox: it is as if Borstam is metaphorically shouting her message, but the video is utterly silent, except for the ambient noises of the park. Borstam was adopted from South Korea to a small town in southern Sweden in 1977 at the age of two, yet this biographical information is absent from this short piece. I first viewed the video at an adoptee conference in South Korea, as part of an adoptee artist showcase, where Korean adoptee cultural producers—poets, fiction writers, filmmakers, playwrights, artists, and songwriters––from around the world presented their work. During the discussion following the showcase, many of the artists, despite the fact that their work explicitly represented their adopted histories, refused to be identified as an “adoptee artist,” finding the label to be overly limiting, and certainly out of fashion for cosmopolitan artists producing work in a “post-identity-politics” moment. In contrast, Borstam described how, as a student in a Swedish art academy, she was discouraged from making work that was about her “roots,” because it was too “personal” or self-exploratory. Rather, she was instructed to create work that was “universal.”

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After some years of agonizing paralysis over her work, she met other adopted Korean artists in Scandinavia, and they formed the collective Unidentified Foreign Objects Lab (UFOLab). As she explained to the conference audience, it was only after she embraced her identity as an “adoptee artist” that she felt free to make art again. What was striking to me was the fact that Borstam actively claimed herself to be an adoptee artist, and yet among her peers at the artists’ showcase, she produced work that was the least identifiably “adoption themed.” Thus, although the work might be applauded by her art instructors for taking on a “universal” register, for Borstam, her active identification as a person with a particular life history is what allowed her to make the work in the first place. In this essay, I take Ben’s statement as a starting point for thinking through what I call adoptees’ (im)possible lives. These are the simultaneous and incommensurable biographies that constitute the subjectivities of transnationally adopted people for whom kinship, memory, and identity are entangled with the contested politics of adoption. Adoptees’ struggle for personal and biographical coherence is often performed through a process of searching for and reuniting with birth parents as they seek definitive accounts of their adoption histories in order to “repair the broken narrative” (Tomes 1998). Through the process of search, which is always also about a “journey of the self,” many encounter the institutions that mediated their transformations from “eligible orphans” to “international adoptees,” providing evidence of their past lives as expendable bodies in the context of South Korea’s rapid modernization and biopolitical state projects. Common experiences with South Korean bureaucracy and the revelation of unethical practices by adoption agencies and social workers have brought long-marginalized critiques of adoption into the center, such that it is no longer surprising to see strongly worded analyses of adoption as an imperialist practice iterated on adoptee blogs and also in mainstream media venues. This collective narrative offers a new biography for adoptees, most notably among those who identify as “Koreans,” not through blood or genealogy, but through a common history of shared suffering, oppression, and violence. Yet this narrative replaces kinship––which privileges biological relatedness as the “truth” of personal identity––with politics, which privileges state power as the “truth” of collective identity. In contrast, adoptees like Ben suggest that there can be no consensus among adoptees about the moral or ethical value of adoption as a highly stratified system and as a defining aspect of their lives. What remains are the possible and impossible lives that continue to bind adoptees, regardless of their political views, around what adoptee artist Anna Borstam might call “the missing O.”

N OT E S

1. A full accounting of the history of adoptions from South Korea is beyond the scope of this article. More than two hundred thousand children have been adopted from South Korea

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since 1953, with more than 70 percent adopted in the United States. The first wave was that of “mixed-race” children, born to Korean women and fathered by U.S. or UN soldiers, and identified as Korean “war orphans.” As the mixed-race population declined in the mid-1960s, children of full Korean parentage were sent abroad, but the circumstances of their abandonment had more to do with poverty and a lack of social-welfare support for poor families. By the 1970s and ‘80s, divorce and unwed motherhood were the main causes for adoption relinquishment, but under an unregulated system that aligned with the state’s development and population reduction goals and that encouraged the out-migration of children, missing children (children accidentally separated from their parents, put into orphanages, and slated for adoption without any attempt to reunite them with their parents) and children who were never relinquished were also sent for adoption overseas. The tide turned after the 1988 summer Olympic Games, when international media attention on the large number of children “exported” by the newly industrialized country became a source of national shame. By the 1990s, more than 90 percent of children sent overseas were born to unwed mothers in their early twenties and late teens. Since the early 2000s, overseas adoption numbers have fallen steadily, mostly due to government efforts to limit the numbers of children sent abroad, and to encourage domestic adoption. In addition, South Korean NGOs and transnational adoptee organizations have worked to promote family-preservation policies and programs to encourage single women to keep their children. For more information on the origins of Korean adoption, see Kim 2009.

REFERENCES

Ahmed, Sara. 2010. The Promise of Happiness. Durham, NC: Duke University Press. Anagnost, Ann. 1997. National Past-Times: Narrative, Representation, and Power in Modern China. Durham, NC: Duke University Press. Butler, Judith. 2003. “Afterward: After Loss, What Then?” In Loss: The Politics of Mourning, edited by David Eng and David Kajanjian, 467–74. Berkeley: University of California Press. Carsten, Janet. 2007. “Introduction: Ghosts of Memory.” In Ghosts of Memory: Essays on Remembrance and Relatedness, 1–35. London: Blackwell. Eng, David. 2010. The Feeling of Kinship: Queer Liberalism and the Racialization of Intimacy. Durham, NC: Duke University Press. Honig, Elizabeth. 2005. “Phantom Lives, Narratives of Possibility.” In Cultures of Transnational Adoption, edited by T. A. Volkman, 213–22. Durham, NC: Duke University Press. Kendall, Laurel. 2005. “Birth Mothers and Imaginary Lives.” In Cultures of Transnational Adoption, ed. T. A. Volkman, 162–81. Durham, NC: Duke University Press. Kim, Eleana. 2009. The Origins of Korean Adoption: Cold War Geopolitics and Intimate Diplomacy. Working Paper Series (WP 09–09). Washington: U.S.–Korea Institute at SAIS, Johns Hopkins University. ———. 2010. Adopted Territory: Transnational Korean Adoptees and the Politics of Belonging. Durham, NC: Duke University Press. Lo, Beth Kyong. 2006. “Korean Psych 101: Concepts of Hwa-Byung in Relation to Korean Adoption.” In Outsiders Within: Writing on Transracial Adoption, edited by J. J. Trenka, J. C. Oparah, and S. Y. Shin, 167–76. Cambridge, MA: South End Press.

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Müller, Anders Riel. 2012. “Rethinking Adoptee Justice: Linking Adoptees to Other Groups That Labored to Make Korea’s Economic Miracle.” Korea Policy Institute website, November 12. http://kpolicy.org/1211123andersmullerrethinkingadopteejustice/. Accessed January 30. Tomes, Kimberly Saree. 1998. Looking for Wendy. Video. New York: Third World Newsreel. Warner, Michael. 2002. “Publics and Counterpublics.” Public Culture 14 (1): 49–90. Zigon, Jarrett. 2010. “Moral and Ethical Assemblages: A Response to Fassin and Stoczkowski.” Anthropological Theory 10 (1–2): 3–15.

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6 “FORCED PREGNANCY,” HUMANITARIAN ACCESS TO REPRODUCTIVE RIGHTS, AND LOCATING “LIFE” WITHIN THE POWERS OF “DEATH” Nayanika Mookherjee

The power over and right of life and death is central to most contemporary events of conflict. This is more so the case in the context of wartime rape and “forced pregnancy.” Through the declaration of rape as a war crime at the UN Beijing conference in 1995, feminists and human-rights activists have highlighted the consequences of gender-based violence during conflicts. The United Nations Commission on Human Rights and the Rome Statute of the International Criminal Court have condemned “forced pregnancy” as a “crime against humanity.” According to the Rome Statute, “ ‘Forced pregnancy’ means the unlawful confinement of a woman forcibly made pregnant, with the intent of affecting the ethnic composition of any population or carrying out other grave violations of international law. This definition shall not in any way be interpreted as affecting national laws relating to pregnancy” (United Nations 1998).1 Through “forced pregnancy,” women’s access to abortion is restricted in the context of wartime rape, as their perpetrators might confine them till it is ensured that they cannot terminate their pregnancies. Further, in postconflict situations the situation of women is exacerbated, as various sovereigns—their own governments, social workers, doctors, and national laws—might restrict their access to the termination of their pregnancies engendered through wartime rape. However, the politics of sovereignty in terms of determining the right and power of life and death can also come to operate in instances of humanitarian intervention in terms of providing access to reproductive rights in the context of forced pregnancies during times of conflict.

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In this chapter, I seek to unravel the contradictions that emerge from the realization of reproductive rights in the face of traumatic and gendered violence in military conflicts. Here, I focus on the figure of the raped woman during the Bangladesh war of 1971 as well as the figure of the pregnant woman (as a result of these rapes during the war of 1971). This chapter is based on a decade of ethnographic research in Bangladesh that involved interviews with doctors, social workers, and organizations working with raped women, along with an examination of archival government documents and press reports after the war. This research examined public memories of sexual violence during the Bangladesh war of 1971 (Mookherjee 2004, 2006, 2015). By addressing the processes of abortion and adoption that were made available to women raped during the Bangladesh war and the subsequent introduction of family planning in Bangladesh, the chapter asks, Which reproductive futures were to be invested in and which futures were obliterated? These are difficult, painful questions with no easy answers. This chapter is an attempt to address these uncomfortable issues, which lie between/along with death and life. It seeks to track the various historical, political realities of the practices of sovereignty and biopolitics and to provide a multifaceted, grounded account of these manifestations beyond their abstractions.

L O C AT I N G T H E S O V E R E I G N DY N A M I C S O F T H E R E H A B I L I TAT I O N P R O G R A M

In 1947, the independence of India from British colonial rule resulted in the partition of India by carving out the eastern and northwestern corners of the country, which came to be known as East and West Pakistan, respectively. Despite different imaginations (around geography, culture, and language) of what the new state of Pakistan would be, what was common to West and East Pakistan was the idea of a Muslim homeland. West Pakistani authorities, however, considered the practice of Islam in East Pakistan as too Bengali (perceived as Hinduized). Distrustful of the religious allegiance of Bengali Muslims, over the years the West Pakistani government imposed various administrative, linguistic, military, civil, and economic controls. This led to the nine-month-long liberation war in 1971. Thereafter, East Pakistan became independent from West Pakistan, and Bangladesh was formed. In 1971, with the end of the liberation war, Bangladesh was faced with the staggering number of three million dead and two hundred thousand women raped (official and contested statistics) in a span of nine months (Brownmiller 1975). This damage was perpetrated by the Pakistani army and Razakars (local Bengali collaborators), purportedly in their mission to “improve the genes of the Bengali people,” populating Bangladesh with a new race of “pure” Muslims, and to dilute, weaken, and destroy Bengali nationalism.2 One of the purported and oft-cited reasons for the prevalence of rape of Bangladeshi women by the Pakistani army was to “improve the genes of the Bengali people,”

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because Pakistan apparently considered the practice of Islam in Bengal as “inferior and impure” (Roy 1983; Ahmed 2001). After the war, instead of consigning the issue of wartime rape to oblivion, the Bangladeshi government publicly referred to the women raped as birangonas (war heroines). In the case of wartime rape, this public pronouncement has been an unprecedented move to date and as yet known by few outside Bangladesh. The following government announcement in 1971 first brought this reference to the public eye: “On 22nd December 1971, A. H. M. Kamruzzamman, Home Minister of the Interim Government of Bangladesh, announced on radio from Mujibnagar that all young girls and women who have been subjected to inhuman torture by the occupying Pakistani army in the last nine months will all be accorded full respect as birangonas (war heroines) of the Bangladesh liberation struggle” (Purbodesh, December 23, 1971). The overall attempt of the rehabilitation program was to prevent the birangonas from being socially ostracized, and as a result the government attempted to rehabilitate them.3 This rehabilitation was made possible by ensuring that the women who had become pregnant as a result of the rapes had access to abortion or were able to put their children up for international adoption. At the same time, the government attempted to marry off the “war heroines” or provided them with vocational training so that they could secure jobs. The eulogization of raped women as “war heroines” and their rehabilitation were thus rooted in a multifaceted modernist agenda. Following the rules of Bengali grammar, birangona is a combination of the two words bir and ongona, literally meaning “brave woman,” and in Bangladesh connoting a war heroine, it referred predominantly to the women raped during 1971. Muslim birangonas, according to the theological author Moinuddin (1978), were the “eminent historical and religious Muslim women who fought gallantly in the battle fields alongside their husbands for the sake of defending Islam.” The heroic and virtuous connotations of the term are best exemplified by precolonial materials from North India identified by Kathryn Hansen in various secondary sources (Hansen 1988). To her the virangana (the North Indian reference to birangona) emerges as an unconventional figure of Indian womanhood, neither the self-sacrificing wife nor the omnipotent matriarch. Instead, the virangana is an acceptable, legitimate, virtuous, and powerful figure for the purpose of the group’s defense, even though her acts transgress normative gender roles. Sufia Kamal, a noted poet of Bangladesh, tried to locate the raped women of 1971 within these heroic iconographies, not only by calling them birangonas but by saying that men fought with weapons but women fought with their bodies. Younger Bangladeshi feminists also consider the state’s attempt to categorize all raped women as birangonas as a reformist and modernist attempt to enable the state to rehabilitate the raped women in part by disrupting middle-class values about women’s chastity and purity. At the same time older feminists assumed that women would be socially ostracized in independent Bangladesh because of its rural and religious background. Hence these practices of the rehabilitation program came to stand in for the development of Bangladeshi society out

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of the “traditions and taboos of Muslim society” (NBBWRP 1974). At the same time the modernist aspect of the rehabilitation program came to stand in for the symbolic evocation of the dynamism of the new nation. Although the sovereign and biopolitical practices of the Bangladeshi state seem to be intrinsic to the various dynamics of the rehabilitation program, these practices need to be located in their various historical and political contexts to highlight how the state dealt with the women raped during 1971. The very public invocation by the Bangladeshi government to refer to the women as birangonas was starkly distinct from the accounts of “honour killing” (as a mark of masculine honour) that are prevalent in the scholarship on the partition (Das 1995).4 By referring to the women as birangonas, the Bangladeshi state was able to highlight its own position as a victim of the West Pakistani state’s abuses as well as to emphasize the rape perpetrated by the Pakistani army on the Bangladeshi women. The representation of Bangladesh as “deficient in the Islam it practised was evoked repeatedly by Pakistani forces during the war—it folded into the rapes of Bangladeshi women and men by the Pakistani soldiers who sometimes saw themselves as physically introducing Islamic substance into perceived nonIslamic bodies” (Mookherjee 2012). The Bangladeshi government’s position further constituted a distinct break from what it rendered as the Sharia-law-driven “Pakistani” way of dealing with the issues of rape and reproductive violence. Under Sharia, rape is often seen to be akin to jena (adultery) for married women and fornication for unmarried women. Thus, declaring that women raped during 1971 were war heroines enabled the Bangladeshi government to distinguish itself as practicing a different kind of Islam than that of the Pakistani government. Thus it subversively overturned the label attached to Bangladesh as a country practicing a supposedly deficient form of Islam and instead helped it to claim that it was a different kind of Muslim nation, one that valued its women and their contributions to the freedom struggle. Not only was this claim of being a different kind of Muslim nation projected for the benefit of external entities; it was also implicated in the internal dynamics of the “taboos and traditions” of Muslim society within Bangladesh, which the rehabilitation program was seeking to deliver the women from. According to older feminists, this declaration of the raped women as birangonas was directed toward the religious practices of Bangladeshi communities who were deemed to be rural, illiterate, and traditional by the leftliberal activists in Dhaka and who, it was feared, were bound to ostracize the birangonas. For the younger feminists, this declaration was meant to address and correct middleclass hypocrisy around the transgression of female chastity. Thus the rehabilitation program and its principles came to stand in for the dynamism of the new nation. The aim to reduce the ostracizing of raped women was deemed possible only under a left-liberal Awami League government led by Sheikh Mujibur Rehman, considered by some to be the father of the nation. At a time when abortion was not widely available in Europe and America, Bangladesh’s role in introducing abortion to deal with issues of forced pregnancy was unprecedented. These practices of the “Muslim” country

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of Bangladesh in the early 1970s were radical precursors to international legislation on abortion in circumstances of forced pregnancy adopted in the 1990s. Yet from the perspectives of social workers who carried out everyday bureaucratic tasks, the main objective of the rehabilitation program was to address the sheer logistical aspect of the large number of raped women to be absorbed into the new nation. Rather than concerning itself with the Sharia law prevalent under the Pakistani government, this very emotive and public designation of the women as birangonas by the Bangladeshi government was an attempt to bring into the fold of the nation the large numbers of women raped during the war. Without these historical and political contingencies, the biopolitical and sovereign practices inherent in the rehabilitation program cannot be identified and comprehended adequately.

L O C AT I N G L I F E I N T H E P O W E R O F D E AT H : T H E R O L E O F L AW S

Not only did the invocation of the raped woman as a birangona generate a way through which life could be accorded to her. At the same time, the figure of the war heroine can be juxtaposed to the various laws that sought to reconfigure the raped and pregnant women of the war of 1971. The state established a Relief and Rehabilitation Board in 1972 that was charged with the specific duties of rendering relief and rehabilitation to war-affected women. The board’s work was framed in terms of “emergency.” The emergency here was understood in terms of the numbers of women who were pregnant as a result of rape. Different newspapers estimated these numbers at twenty-five hundred to twenty-five thousand women. The work itself was primarily organized around two processes: abortion and adoption. The clinical aspects of the “emergency programmes” undertaken by the Rehabilitation Board were expressed in this manner: “for the termination of pregnancies and treatment of gynaecological disorders for the victims of the Pakistani army’s physical torture” (NBBWRP 1974, 7)—that is, abortion, the illegality of which was temporarily suspended (since under Sharia law under the Pakistani government, abortion was illegal), whereby the practices of abortion were located in realms of legality and illegality. Expressed in board documents as “medical help” for the termination of pregnancies, abortions were carried out with the assistance of American and British doctors. This medical assistance was organized under the auspices of the International Planned Parenthood Federation (IPPF), London, which, besides donating money, provided medicine and the services of internationally famed gynaecologists who trained other local doctors in the latest techniques of abortion. The “Abortion Centers” were set up in middle-class residential areas in Dhaka, which alone carried out 95% of the total abortions performed, more than one hundred in its first month, with an overall number of twenty-five hundred over time. Western feminists applauded these efforts as proof of women’s access to reproductive rights, in contrast to the restrictions prevalent in the United States (Greer 1972; Brownmiller 1975). In interviews undertaken in the late 1990s, social workers and doctors vividly recall the abortions and the state of the women after they were “cured” (Akhtar et al. 2001, 221, 238).

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Dr. Geoffrey Davis, an Australian doctor, estimated that 200,000 women underwent abortion and hence considered the number of raped women to be higher, at 470,000, instead of the official 200,000 (Banglar Bani, December 1972 [genocide issue]). Abortion was being carried out at this time as a government initiative. However, in contrast to Pakistan, which disallowed abortion according to its Sharia law, there seemed to be no legislation or legal fiat with respect to the practices of abortion in Bangladesh. Yet even in the absence of legislation that would legalize abortions or penalize providers performing them, Davis found that local doctors were hesitant to carry out abortions. Since the Koran disallowed abortion, menstrual regulation (MR) rather than abortion was made legal in Bangladesh in 1973. Menstrual regulation allowed for the termination of the fetus within ninety days, within the range of Islamic law’s (Sura al Bekhara) consideration of when and at what point life comes to the fetus (personal communication from a doctor). The time frame within which abortion is usually possible is twenty-four to twenty-eight weeks. Following the norms established by Islamic law, MR, as the legal form of pregnancy termination, continues to be central to Bangladesh’s family-planning program today. MR is not considered abortion, yet it provides cheap and safe termination of pregnancy without circumventing the law. Yet in the period 1971–72, abortions—not MR—were being performed through this internationally supported government program in a context where abortion had an ambiguous relationship to law. It was neither illegal nor legal in this period. This ambiguity was expressed, for instance, in a doctor’s denial that abortion had taken place (though it was known by other doctors and social workers that she had helped/conducted the abortions). In spite of the well-documented role of the International Planned Parenthood Association (IPPF) in facilitating abortions in Bangladesh (NBBWRP 1974; Brownmiller 1975; newspaper reports), IPPF claimed ignorance and said it had no records of its role. Throughout my fieldwork, I found people quite reticent to talk about the prevalence of abortion after the war, perhaps because abortion, in contrast to MR, is illegal in Bangladesh today. Curiously, no documentation can be found about the legalization of abortion, and its fiat seems to be based on word of mouth and its neither legal nor illegal status. As soon as the pregnancies caused by rape during 1971 were “cleansed,” MR5 was introduced as the acceptable legal form of termination of the fetus in Bangladesh. Alongside abortion, women were also giving birth to babies born as a result of rape. In my interviews, physicians delineated a “two-tier cleansing process,” as they called it: either the women were conditioned to go through abortion, or they were urged to give up the babies for adoption rather than keep them and develop an attachment to them. In discussions with social workers, some were of the opinion that most birangonas would not want to look at the babies after they were born. Other social workers, contrarily, asserted that some of the women cried when the babies were forcibly taken away from them. Such assertions of mother–infant attachment were also echoed by politicians, such as a British Labour MP I interviewed, who recalled how a young Muslim woman from a poor family wanted to meet the adoptive parents before agreeing to give up her baby for adoption.

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Other humanitarian organizations established services oriented toward the future child. Such services included assistance with birth, international adoption of children, and the care of abandoned children. In 1972, Mother Teresa established the organization Shishubhaban, a drop-in center for women to give birth to babies (Doinik Songbad, January 17, 1972). The center facilitated the international adoption of many war babies. Still located in an alleyway of Islampur in Old Dhaka, today it continues its role as an orphanage. In my interviews with staff it seemed that most of the women came to Shishubhaban in the last phase of pregnancy for the purpose of giving birth to their babies and leaving them in the care of the institution. Against the backdrop of the prevailing Muslim personal law and Sharia law, which forbids adoption, the parliament passed the Inter-Country Adoption Law (Habiba 1997) and the Bangladesh Abandoned Children (Special Provision) Order on October 23, 1972, in order to facilitate this process (Mookherjee 2007).6 Yet international adoptions had already begun as early as July 1972 (Toronto Star, July 16, 1972; Globe and Mail, July 16, 1972). Throughout 1972, adopted children were sent to the United Kingdom, the United States, Canada, Sweden, Switzerland, Norway, the Netherlands, and Belgium. Under this law, people interested in adopting abandoned children applied to the director of social welfare, who took the final decision on their behalf. According to Chowdhury and Shamim (1994, 5–6), the Adoption Law was enacted in order to legitimize the adoption of abandoned children—a practice that contradicted the prevailing Muslim personal law. The law defined abandoned children as those who were “deserted or unclaimed or born out of wedlock” and authorized the government to appoint “statutory guardians”—persons or authorities (usually government officials) entrusted with the care and custody of the persons of abandoned children. However, no mention was made about the adoptees’ right of inheritance. Inheritance under Muslim personal law in Bangladesh is primarily determined by “blood,” which would prevent adopted children from inheriting any property from their adoptive parents unless the parents specifically bequeathed it to them. At the intersection of the Adoption Law and the Muslim personal law, apparently, the government was interested only in “providing substitute homes for the unfortunate children” (Chowdhury and Shamim 1994, 6). Ten years later, in 1982, the Adoption Law was repealed by Ordinance no. 5. A humanrights lawyer mentioned in an interview to me that the Islamicist party Jamaat-e-Islami opposed the law on the basis of its belief that these children were being converted to Christianity or being used for child pornography and prostitution in the Netherlands and Thailand (Chowdhury and Shamim 1994, 6, 25). This view is also shared by some British doctors who worked in Bangladesh in the late 1970s, as well as by some of the Bangladeshi adoptees now based in Europe. Thus the phenomenon of adoption and its repeal is understood through these multiple narratives. With the 1982 repeal of the law, a nineteenthcentury colonial law known as the Guardian and Wards Act 1890 was reinstated with an amendment that prohibits foreigners from being appointed guardians of minors who are citizens of Bangladesh. The aim was to ensure adoption of children by Bangladeshis

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instead of foreigners. The process of appointing a guardian (formerly a government official, now a Bangladeshi citizen) was also deemed to be consistent with Muslim personal law, and by birth the child was defined by the contours of the personal law (Chowdhury and Shamim 1994, 25). Henceforth, religious laws would predominate over secular laws in the case of acquiring guardianship (instead of adoption) of a child. Organizational, bureaucratic practices surrounding abortion were considered necessary for the “cleansing” of the wombs of the women. In the case of advanced pregnancies, women were meant not to have any emotional, maternal attachment to their newly born babies. Hence, the womb of the Bengali woman is made accessible again not only through the birth of the child, but also through ensuring an emotional effacement between mother and child, by keeping the women away from their babies—the latter being further obliterated from Bangladesh through international adoption. Their presence would affect the social structure and perpetuate painful memories of the war. The logistical issue of separating the children from the women thereby became significant. The raped women had to be freed from the motherhood of these babies so that they could be reinstated in their roles as mothers and wives within legitimate heterosexual alliances guaranteed under the umbrella of the new nation. Both abortion and adoption inhabited peculiar relationships to the law in the wake of wartime rape. Yet these relationships were quite different. In the case of adoption, although the prevailing Muslim personal law and Sharia law forbade adoption, these laws were informally and temporarily suspended during this postwar context. This suspension occurred first in terms of a ceasing of enforcement of the law and subsequently in legislation that legalized international adoption. Children born as a result of wartime rapes were immediately put up for international adoption, even before it was “legalized” in 1972. Yet, as we have seen, in time this legislation was repealed, and guardianship replaced adoption. In the case of abortion, it never received an official legal or illegal status. Although international medical assistance was mobilized to provide abortions and education on how to perform abortions to physicians, much like the international humanitarian assistance to set up orphanages and international child adoption, the practice of providing abortions was tacit and surrounded by silence. Today, legislative debates are not available, nor is medical assistance documented in the archives of state institutions and international organizations. Framed within a discourse of “emergency,” abortion was legitimized as a practical necessity arising from the crisis of wartime rape. An oft-repeated comment by social workers and doctors who worked in the rehabilitation program is that they “did not know what else to do. The women had to be returned back to society.” This necessity of “returning” the women reflects Giorgio Agamben’s point: “not only is necessity not unrelated to the juridical order, it is the first and originary source of law” (1995, 27). Though not legal right after the war, abortion did operate as a form of fiat. In spite of local doctors being reluctant to carry out abortion, foreign medical personnel could carry out abortions knowing that there was government authorization for it. It is true that the mass rapes and subsequent

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abortions made it necessary for the law to explicitly address the question of abortion. From 1973 the government took a position against it, whereas earlier there was judicial silence on this issue. This fiat responded to the necessity that women needed to be absorbed into and returned back to society and hence needed to be “cleansed” to enable that return. The war ended in mid-December 1971, and during the subsequent ten months—from January to October 1972—the termination of any pregnancy resulting from rape was permissible. As soon as the pregnancies caused by rape during 1971 were “cleansed,” abortion was made illegal and MR, which followed the norms of Islamic law, was introduced as the acceptable legal form of termination of the fetus in Bangladesh. The repeal of the Adoption Law (ten years after the war) and the reinstitution of the Guardian and Wards Act restricted international adoption. The child–state relationship was reformulated with a renewed interest in the child, a child who had to be reinstated within Muslim personhood. It is important to understand abortion and adoption together, even if they had different subsequent relationships with the law, only because of the rushed necessity with which both were introduced and practiced. The suspension of the illegality of abortion and adoption ensured that these became the official practices guaranteeing the termination of pregnancies and the removal of “war babies” from Bangladesh after the war. Above all, the codification of MR and the Guardian and Wards Act ensured the institutionalization of the national norm of Islamic personhood for women and children, which became pivotal to the nation-state.

C O N C L U S I O N : P U B L I C I T Y A N D P O S T WA R L E G A L C O N F I G U R AT I O N

There is no doubt that the Bangladeshi government’s role in providing access to abortion and to the adoption of children enabled many women who had been raped during the war and had “forced pregnancy” imposed on them to find ways to rebuild their lives. Behind these extensive programs of “rehabilitation” lay the raw wounds of innumerable “war heroines” and the choices they had been confronted with. That reproductive rights should be accessible to women across a whole range of circumstances goes without saying. However, when governments intervene to ensure these rights, reproductive rights become intertwined with biopolitical modalities.7 If biopolitics is the operation of different kinds of political power through which the reproduction of a population is regulated, here the humanitarian need of access to abortion and adoption in a postconflict situation becomes the means through which such power is exercised by the newly formed Bangladeshi state and the multiple sovereigns acting in its name. By ensuring access to the humanitarian need of the hour—that of abortion and adoption—the state also ensured that these raped women would be available for future legitimate sexualities and motherhoods in independent Bangladesh. Through investing in these reproductive futures, and obliterating the motherhoods and futures of the “war babies,” the legitimacy of the newly formed Bangladeshi state is also

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ensured. Here, the provision of reproductive rights becomes the means through which biopolitics controls and regulates the racial connotations and sexuality of the population.8 We have seen how war-related violence (sexual and reproductive) has brought the state and international organizations centrally into issues pertaining to women’s reproductive rights and the concerns with sexually and racially pure populations in the context of the Bangladesh war of 1971. The operation of sovereign power, however, can be comprehended by locating these biopolitical modalities within historical and political contingencies and across different state formations and humanitarian interventions. It is clear that the very laws enabling the practices of abortion and adoption were ambiguous. This ambiguity primarily concerned itself with the presence of the child and the need to expunge it from the newly formed nation. At the same time the birangona could be a citizen of this new nation only as a nonpregnant figure. This is where the sovereign power of the new nation through the rehabilitation program comes into play. While being intertwined with ambiguity, the interventions and regulating mechanisms of abortion and adoption had direct impact in instituting ideas of what constitutes life and of the place of the woman in relation to war and the nation. The heteronormative concerns of the rehabilitation program are primarily with “recovering” the war heroines for the project of the new nation—either to be positioned as productive workers or to be located within legitimate sexual alliances for the purpose of lawful reproduction. These practices would make sense only if we keep in mind the various modernist dimensions of the rehabilitation program, which through its practices around gender issues (relating to the raped woman) sought to stand in for the new vigor of the independent Bangladeshi nation. This vigor would also make sense in the way the state, through its rehabilitation program, also saw itself as a victim of Pakistani military abuses and at the same time distinct from those abuses as a Muslim nation. Through this vision it could deploy its image as an inauthentic Muslim country to make a point about its distinctive Bengali Muslim practices. Bangladesh’s complex negotiation with its identity is also revealed in the legal trajectory surrounding abortion and adoption. That the events of abortion and adoption of the “war babies” after the war could operate without a legal framework highlights how norms and laws were suspended so as to actualize and operationalize the concern relating to the “cleansing” of children born as a result of wartime rape. This is because “authority proves itself not to need law to create law” (Agamben 1995, 16). That a certain form of these exceptional practices—namely, MR instead of abortion, and the Guardian and Wards Act instead of international adoption—becomes the norm and is intitutionalized in the postwar Bangladeshi context highlights how the state seeks to establish Islamic personhood as a foundation for its operation in independent Bangladesh. This discursive shift to MR in 1973 occurs in the context of various international population-control policies being introduced in Bangladesh (Murphy 2013) as well as Sheikh Mujib’s attempt to seek a greater alliance with Pakistan and other Islamic countries. The shift to the normative connotations of the Guardian and Wards Act in the early 1980s coincides with the increased Islamization and militarization put in place by General Zia since the mid-1970s.

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Hence Islamic personhood has become the basis through which the state regulates the unborn and abandoned children in contemporary Bangladesh. At the same time, the publicity relating to the announcements of the rehabilitation program has enabled a certain strengthening of the figure of the raped woman and the public memory surrounding this history. This is how the Bangladeshi government sought to establish a different kind of Muslim nation in the public culture and also how the state understands itself. This public invocation of the birangona is distinct from the public secrecy related to the pregnant raped woman. Whereas the rehabilitation program sought to give a new life to the birangona, the practices of abortion and adoption sought to erase the pregnant woman and her baby. The power of life and death thereby were intricately interlinked with this public memory and secrecy and cannot be understood without this interconnection. The attempt to physically and emotionally expunge the war baby and the multiple sets of desires of the pregnant birangona further leads to the institutionalization of Islamic personhood as the lens through which the state sets up its relationship with the unborn and abandoned children in contemporary Bangladesh. These attempts at certainty in terms of its identity need to be understood in tandem with the quandaries faced by the law and the self-definition of Bangladesh. An unpacking of these historical and political contexts thereby becomes essential to understanding the practices of Bangladeshi sovereign power, its vulnerabilities, and its implications on life and death. Bangladeshi nationhood thereby seems to be riveted with an inherent search for its own legitimacy, given the various fractures in its trajectory, and its reproductive pasts and futures.

N OT E S

1. The last sentence highlights the compromise adopted in this resolution vis-à-vis the debate between the pro-life and pro-choice groups. 2. See Ali 1983, 91; Guhathakurta 1996; Mookherjee 2012a. 3. The government designation of “war heroines” applied to all women who had been raped during the war, as women from all socioeconomic backgrounds encountered rape. It is important to note that the history of rape has remained a topic of literary and visual media through the last forty-two years in Bangladesh, thereby ensuring that the raped woman endured as an iconic figure. 4. For similar debates during the partition of India, see Butalia 1998; Das 1995; and Menon and Bhasin 1998. 5. According to Murphy 2013, MR was the name given to a device in transnational familyplanning circles organized by USAID’s Office of Population and the IPPF. It was designated as “the evacuation of uterine contents from a woman who is at risk of being pregnant, before she can be declared ‘obviously pregnant’ by clinical examination and other diagnostic measures” (Soderstrom 1979, cited in Murphy 2013). 6. Reference: President’s Order no. 124 of 1972, later repealed by Ordinance no. 5 of 1982 (Dhaka Law Review, 1972–75).

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7. My critique of this government intervention should not be read as a pro-life position. 8. For an insightful analysis on race and biopower in the context of apartheid and slavery, see Mbembe 2003.

REFERENCES

Agamben, Giorgio. 2005. State of Exception. Translated by K. Attell. Chicago and London: University of Chicago Press. Ahmed, Rafiuddin, ed. 2001. Understanding the Bengali Muslims: Interpretative Essays. Dhaka, Bangladesh: University Press Limited. Akhtar, Shaheen, Suraiya Begum, Hameeda Hossein, Sufia Kamal, and Meghna Guhathakurta, eds. 2001. Narir ekattor o juddhoporoborti koththo kahini [Oral history accounts of women’s experiences during 1971 and after the war]. Dhaka: Ain-O-Shalish-Kendro (ASK). Ali, Tariq. 1983. Can Pakistan Survive? The Death of a State. London: Penguin Books. Begum, Suraiya. 2001. “Begum Hosneara: Onekdin nikhoj shamir oppekhai chilen” [Begum Hosneara: She waited long for her disappeared husband]. In Narir ekattor o juddhoporoborti koththo kahini [Oral history accounts of women’s experiences during 1971 and after the war], edited by Shaheen Akhtar, Suraiya Begum, Hameeda Hossein, Sufia Kamal, and Meghna Guhathakurta, 227–47. Dhaka: Ain-O-Shalish-Kendro (ASK). Brownmiller, Susan. 1975. “Bangladesh.” In Against Our Will: Men, Women and Rape, 78–86. London: Secker & Warburg. Butalia, Urvashi. 1998. The Other Side of Silence: Voices from the Partition of India. New Delhi: Viking Penguin India. Chowdhury, A., and I. Shamim. 1994. Abandoned Children: Better Home, Better Future. Dhaka, Bangladesh: Centres for Training and Rehabilitation of Destitute Women (CTRDW). Das, Veena. 1995. “National Honour and Practical Kinship: Of Unwanted Women and Children.” In Critical Events, 55–83. Delhi: Oxford University Press. Eaton, Richard. M. 2001. “Who Are the Bengali Muslims? Conversion and Islamization in Bengal.” In Understanding the Bengali Muslims: Interpretative Essays, edited by Rafiuddin Ahmed, 26–51. Dhaka, Bangladesh: University Press Limited. Ewing, Katharine, ed. 1988. Shariat and Ambiguity in South Asian Islam. Berkeley: University of California Press. Foucault, Michel. 1997. “17 March 1976.” In Society Must Be Defended: Lectures at the College de France, 1975–76, translated by David Macey, 239–64. London: Penguin, Allen Lane. Greer, Germaine. 1972. “The Rape of the Bengali Women.” Sunday Times (London), April 9. Guhathakurta, Meghna. 1996. “Dhorshon ekti juddhaporadh” [Rape is a war crime]. Bulletin of Ain O Salish Kendra (ASK) (Dhaka), February 6–8. Habiba, U. 1997. “71 er Gonodhorshoner bichar proshonge [The issue of justice as regards the mass rapes of 1971].” Bulletin of Ain-O-Shalish Kendra, December, 2–6. Hansen, Kathryn. 1988. “The Virangana in North Indian History: Myth and Popular Culture.” Economic and Political Weekly 23, no. 18 (April 30), WS25–WS33. Mbembe, Achille. 2003. “Necropolitics.” Public Culture 15 (1): 11–40. Menon, Ritu, and Kamla Bhasin. 1998. Borders and Boundaries: Women in India’s Partition. New Delhi: Kali for Women.

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Moinuddin, 1978. Muslim Birangona. Dhaka: Al Hamra Library. Mookherjee, Nayanika. 2004. “ ‘My Man (Honour) Is Lost but I Still Have My Iman (Principle)’: Sexual Violence and Articulations of Masculinity.” In South Asian Masculinities, edited by Radhika Chopra, Caroline Osella, and Filippo Osella, 131–59. New Delhi: Kali for Women. ———. 2006. “ ‘Remembering to Forget’: Public Secrecy and Memory of Sexual Violence in Bangladesh.” Journal of the Royal Anthropological Institute (JRAI) 12, no. 2 (June): 433–50. ———. 2007. “Available Motherhood: Legal Technologies, ‘State of Exception’ and the Dekinning of ‘War Babies’ in Bangladesh.” Special issue, “The State and Children’s Fate: Reproduction in Traumatic Times,” Childhood: A Journal of Global Child Research 14, no. 3 (August): 339–54. ———. 2012a. “The Absent Piece of Skin: Sexual Violence in the Bangladesh War and Its Gendered and Racialised Inscriptions.” Modern Asian Studies 46 (6): 1572–1601. ———. 2012b. “Reproductive Heteronormativity and Sexual Violence in the Bangladesh War of 1971: Discussion with Prof. Gayatri Chakravorty Spivak.” Social Text 30, no. 2, issue 111 (Summer): 123–31. ———2015. The Spectral Wound: Sexual Violence, Public Memories and the Bangladesh War of 1971. Foreword by Veena Das. Durham, NC: Duke University Press. Murphy, M. 2013. Seizing the Means of Reproduction: Entanglements of Feminism, Health, and Technoscience (Experimental Futures). Durham, NC: Duke University Press. NBBWRP (National Board of Bangladesh Women’s Rehabilitation Programme). 1974. Women’s Work. Dhaka: Bangladesh Co-operative Book Society. Roy, Asim. 1983. The Islamic Syncretic Tradition in Bengal. Princeton, NJ: Princeton University Press. Soderstrom, R. 1979. “Menstrual Regulation Technology.” In Pregnancy Termination, edited by G. I. Zatuchni, J. J. Sciarra, and J. J. Speidel, PARFR Series on Fertility Regulation, 60–68. Hagerstown, MD: Harper and Row. Stiglmayer, Alexandra. 1994. “The Rapes in Bosnia-Herzegovina.” In Mass Rape: The War against Women in Bosnia, translated by Marion Faber, 82–169. Lincoln: University of Nebraska Press. Taylor, Christopher. 1999. Sacrifice as Terror: The Rwandan Genocide of 1994. Oxford: Berg. United Nations. 1998. Rome Statute of the International Criminal Court. http://legal.un.org /icc/statute/romefra.htm.

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7 BLEEDING DREAMS Miscarriage and the Bindings of the Unborn in the Palestinian Refugee Community of Tyre, South Lebanon

Sylvain Perdigon

In recent years, the discourse of trauma has provided a medium through which the Palestinian family came to elicit peculiar textures of anxiety. Didier Fassin and Richard Rechtman (2009) thus note the “power of collective evidence” acquired, among global audiences, by the notion that historical subjects like Palestinians are prone to misuse each other by misusing the pains inflicted upon them by political violence, war, and the (post-) colonial condition. A compassionate demand often accompanies such anxieties: that those subjects should be given access to psychotherapeutic pedagogies aimed at the reclaiming of individual mastery over traumatic representations of the past (e.g., Fischer 2007). Yet one is reminded here of Veena Das’s important warning that “narratives [of violence] cannot be told unless we see the relation between pain and language that a culture has evolved” (Das 2007, 57). In this chapter I want to show how, in the Palestinian refugee camps of Tyre, South Lebanon, an enigmatic life form called al-Qireyne contributes to keeping alive an alternative analytical space for attending to the quandaries of kinship, or of “the mutuality of being” (Sahlins 2013), in the spaces of living and dying that the politics of empire, nationhood, and sovereignty precipitated in the eastern Mediterranean in the last hundred years. Toward this end, I explore a register of experience and discourse associated in the camps of Tyre with the encounter of al-Qireyne. This experience is difficult to characterize in one fell swoop, falling as it does somewhere between dreaming and spirit possession while not coinciding with either of them. In the words of my Palestinian friends and interlocutors, “al-Qireyne is not a dream, but she comes in one’s dreams.” The formula, as

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we can see, slips from a negative predicate to one that indexes the context and the mode of appearance of a subject whose identity remains studiously unspecified. What the grammatical break felicitously conveys, instead, is the passive experience of the force of a mysterious life-form originating outside the subject. The experience is always unsettling, upsetting, dysphoric. What signals the encounter of al-Qireyne are not only dreams that are peculiarly frightening and gloomy, but also the dreary continuation of these dreams in waking life. These effects make their presence felt as deep anxiety and mental and physical exhaustion, as well as in episodes of miscarriage and infertility. Al-Qireyne dwells in the deep recesses of the everyday, and it—she—seems to have escaped the attention of even sharp observers of camp life.1 She would have escaped my attention, too, were it not for a fortuitous bit of conversation in July 2007. It was brutally hot that day, and Nasser and his wife, Ibtissam, two members of the family that took me in when I lived for two years in al-Bass refugee camp, had urged me to spend the afternoon with them in the relative coolness of their house.2 The conversation had been wandering rather idly, when at some point I mentioned old studies I had read about the belief in “al Qarineh, a she-demon, who attacks children” in Mandatory Palestine (e.g., Canaan 1927). There was some initial confusion caused by my pronunciation of “Qarineh,” until Ibtissam recognized what I was speaking of—“Iiiiiii! You mean alQireyne”—and went on to say that, indeed, she “had had al-Qireyne” herself when she was pregnant with her first child, Khadija, now aged ten. Nasser then intervened, admitting somewhat uneasily that he, too, “had had” al-Qireyne: when he came back to Tyre from Saida, where he had spent the last years of the war, and a few months before he got married. I realized before long that the encounter of al-Qireyne is a common, dreaded occurrence in the camps of Tyre. By simply mentioning al-Qireyne to my closest contacts, I had drawn, after a week, a list of a dozen other of her victims who were willing—in some cases, in fact eager—to speak to me about their experience. Lest it be misunderstood, my argument is not that suffering at the hands of al-Qireyne constitutes a Palestinian vernacular of trauma. Instead, I suggest a certain family resemblance between two idioms of psychic and bodily suffering while also maintaining their definite incommensurability. The family resemblance concerns the constraining power and unruly life of certain images in the mind. Like the notion of trauma that hinges on the disruptive quasi-agency accorded to some mental images, al-Qireyne’s imagery, too, evokes the unruliness of unbidden thoughts and images that invade one’s being. However, the destinies of the two concepts branch off irrevocably when it comes to the horizon, or telos, of these two concepts. Whereas the treatment of trauma aims at the reclaiming of mastery over those representations that have taken over the subject, there is no such telos to the images in which al-Qireyne manifests herself. To the contrary, the recognition of al-Qireyne’s works in one’s own dreams signals the acceptance that a radical, indomitable separateness may, on occasion, lie in one’s imaginary itself. And if such an occasion also signals threats hanging over the connections of al-rahim—the word my Palestinian interlocutors in Tyre use to speak of the most intense ties of

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kinship—it also becomes in their hands an occasion to care for, nurture, and intensify these connections.

W H AT I S A L - Q I R E Y N E A N Y WAY ?

The signifier qarin appears eight times in the Quran, often (e.g., 43:36) to speak of a mysterious and demonic “companion.” The term also appears in a hadith frequently quoted in commentaries on this particular line: “The Messenger of God (may peace be upon him) said: There is none amongst you who does not have his qarin [qarinuhu] from amongst the jinn [men al-jinn]. They said: you too, O Messenger of God? Thereupon he said: Yes, but God helps me against him and so I am safe from his hand and he does not command me but for good” (Sahih Muslim 6757). Exegetes of the Quran typically interpret these passages so as to confine its relevance purely to the domain of personal ethics. In this reading, al-Qarin is described as the demon (al-shaytan) individually appointed to each human being and tasked with tempting and misguiding her with its whispers. Muhammad Asad takes this ethical interpretation to the limit by translating “shaytan,” in the Quranic aya mentioned above, as “evil impulse,” and “qarin” as “his other self,” thus also enclosing al-Qarin definitely into the subject. Such interpretations stand in tension with alternative, orally based traditions that, on the contrary, emphasize the relative exteriority of al-Qarin (often in the feminine form al-Qarina) to the self, and endow it with attributes such as a sexual identity and personality traits—including, most prominently, jealousy (e.g., Drieskens 2008, 151–54). These ontological debates, however, do not resonate strongly with the concerns of everyday life in the camps in Tyre. My Palestinian interlocutors who either were themselves afflicted by al-Qireyne or attended to the anguish of others seemed to adhere to a shared understanding of al-Qireyne as a reality intermediate, and mediating, between the jinn and the self (al-nafs). When asked, many of them described al-Qireyne as “mush jinn, bas men al-jinn” (literally, “not a jinn, but from the jinn”), in a phrase that in some respects echoes the words of the Prophet in the aforementioned hadith. But that’s about it. When I persisted in asking broad, definitional questions such as “Shou al-Qireyne?” (“What is al-Qireyne?”), the answer as a rule was an unapologetic “I don’t know.” Most of my interlocutors expressed or showed a clear reluctance to offer a decontextualized account of al-Qireyne divorced from the evidence of their own experience. The encounters with al-Qireyne disproportionately coincide in the camps of Tyre with difficult pregnancies or stress and anxiety about female fertility. Women and men, however, both insisted that gender (womanhood) and pregnancy are, at most, factors that increase one’s vulnerability to the attacks of al-Qireyne, and that men, too, suffered such attacks. They were anxious that I might map its disruptive (un)doings too hastily onto the gendered boundaries that in numerous other respects structure and overcode everyday life in the camps. With this caution in mind, I now turn to two actual case histories of encounters with al-Qireyne. The first of these has an ideal-typical quality, insofar as it

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gathers together elements that recur individually or in clusters in the other accounts. In this respect, it is useful for laying out some essential qualities of the medium, or milieu, that al-Qireyne’s irruptions help to precipitate, and render available for further transactions within the dar (joint, patrilocal family residence) and beyond.

MANAL

Manal was twenty-two years old when we sat together, in October 2007, for a conversation about her experience with al-Qireyne. The eldest of five children, she had been then living for three years in the dar of her father-in-law, Abou Nabil, in Jall al-Bahar, a cramped Palestinian Bedouin “gathering” (tajammu’: unofficial squatter camp) stretching on a narrow strip of land between the sea and the coastal road north of Tyre. Emm Nabil, her mother-in-law, attended the interview and took a great interest in it, sometimes adding details and making comparisons with her own experience. I also interviewed Manal’s father, separately, on the role he played in the episode. Things had started three years before, when Manal first became pregnant. She suddenly found herself having scary dreams. Most of the time, she would see a huge snake coming through the door to devour her; once, thousands of smaller ones rained down upon her from the beams that hold the corrugated iron roof. Sometimes, she would feel that somebody was forcing a living snake down her throat to make her give birth before term. Or else she would see somebody, or something, hitting her on the stomach in her dreams, and she would wake up feeling sore and enervated. On awakening, she would sometimes find marks on the veins of her arm, as though a needle had been used to siphon off blood from her body. As a result, Manal was terrified to even go to bed. In this period she experienced repeated miscarriages—six in total. Manal was told by others in the settlement that her miscarriages might be caused by the mischief of al-Qireyne, about which, she insists, she had not heard before. Her father, Nabil, took a significant part in the story from that point on. He explained to me that the same thing had happened four or five times in the family, including to his own sister. In his rounds as a fish seller in the hills of Jabal ‘Amil, he learned about a sheykh (healer). A niece who had been married off in the same village from which the sheykh hailed, and who had herself suffered many miscarriages, vouched for his powers. Nabil decided to take Manal to the sheykh for consultation because he seemed honest and genuinely benevolent. Manal, thus flanked by her father and mother-in-law, saw the sheykh twice in a fortnight, each time in his grocery store, where he received the afflicted. The first time, he told Manal not to offer any information or comment, but to answer only yes or no to his questions. After ten minutes of such exchanges, he wrote down “something difficult to read” on a sheet of paper and gave Manal precise instructions on how to use it. Three days in a row she was asked to rub her whole body with this paper strip after dipping it in oil. After that, she was to put it in a small bottle and bury it in a clean (tahir, lit. “pure”) place—in this case, the orange grove behind Abou Nabil’s dar. A

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couple of weeks later, having completed this ritual, Manal returned to the sheykh, who did not ask her anything this time but simply gave her the hijab (“talisman,” lit. “screen, veil, protection”; pl. hujub) that he had prepared specifically for her. It consisted of a larger piece of paper, with a long text written in red ink and with a nice smell like musk or ambergris. Again, Manal and her father did not know what the text actually said; she knew only that the text was from the Quran. On the sheykh’s advice, she asked a cobbler to sew the folded hijab and seal it within a small sheath. After she started to wear it, her dreams became normal again. After some time, she gave birth to her and Mansour’s first child, a boy, Salah. Now Manal wears the hijab on her body at night or, alternatively, leaves it with Salah when she feels that al-Qireyne is coming to him—a possibility to which she had been alerted by the sheykh.

T H E D A R A N D T H E OT H E R S C E N E

Like many other interviewees, Manal depicted herself as enduring an experience that she only later recognized through the mediation of relatives, neighbors, and the sheykh as persecution by al-Qireyne. The extralinguistic authenticity and reality of her story and of al-Qireyne more generally is shored up in this and other cases by the temporal sequencing of an experience that remains elusive till named by others. Such an account, in other words, seems to beg the delicate question of the performative aspect of the diagnosis, and of its effect, in particular, on the deferred and recollected experience of symptoms. Yet it also contains indications that this process cannot be equated with a straight causative line going either from symptoms to diagnosis (as in Manal’s presentation) or from diagnosis to (the retrospective misrepresentation of ) symptoms, as in the odd skeptical construal of al-Qireyne that I came by in Tyre. The occasional placement of the hijab next to an infant—Salah, for example—suggests that one gets drawn into the lifeworld where the intrusion of al-Qireyne is possible at different stages and through modes of transmission that do not always involve the medium of expository discourse. What’s more, Manal’s account shows the recognition of al-Qireyne’s intervention to be performative in another, potent way: it recasts relationships in and between dars (here, the household into which Manal is married and the one in which she was born) into a new context (cf. Boddy 1989, 191)—one transfigured by the addition of at least three fundamental, new dimensions. My interlocutors in Tyre see the actual forms in which al-Qireyne appears as a fairly inconsequential matter. For them, the phenomenon’s essence is the state of fear in which it plunges its victims. It is all the more significant since they also consider fear (al-khawf, vb. bikhaf) to be an emotion that is at once spiritually misleading (God only is to be feared) and practically incompatible with the self-discipline necessary to beat the demoralizing uncertainty of refugee life. In contrast, the diagnosis that a member suffers from the assaults of al-Qireyne clears a space in the dar for a type of fear exempt from—because Fear.

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not amenable to—the censure and impatient remonstrance that this emotion habitually invites. Al-Qireyne gives a right to fear, as it were, that camp life evokes and disapproves of at once. The advent, and mooring, of the signifier al-Qireyne also signals the virtual presence of a nonhuman agent mediated through the victim’s body. Although the texture of its various, oneiric incarnations eludes clear-cut categorization, animality is a dominant streak. A majority of my interlocutors, like Manal, strove against one or many snakes, but others mentioned rats, black cats, or a camel. For Emm Nabil, Manal’s mother-in-law, al-Qireyne had even taken the form of a helicopter hovering threateningly over her for hours on end. Last but not least, al-Qireyne also occasionally donned repulsive human forms while hounding some of my interlocutors: an ugly old woman, a baby with a horribly wrinkled face, or even a beloved relative who suddenly takes on a ghastly countenance. Such human appearances are always associated with specific actions on alQireyne’s part: hitting the victim’s abdomen when she is pregnant, strangling her or him, giving him or her a beating.

A nonhuman form of life.

Dream bleeding into waking life. Finally, the naming of al-Qireyne’s role in the woes of a dar’s member attests to the possibility that dreams bleed into the physical world—the dar itself becoming, by the same token, the primary scene of this bleeding. Contacts with al-Qireyne are certainly not the only occasion for this type of porosity. Dreams constitute an everyday feature of dar conversation, and what fuels their circulation is in good part a shared sense of their potential relevance to what is going on or is about to happen. But the irruption of al-Qireyne gives a more dramatic consistency to the crossing of dreams into reality. Witness, for example, the bloody trace of a needle on a vein of Manal’s arm. One could say that alQireyne inscribes in her victims’ bodies signs that operate as pivots, or thresholds, between the world of dreams and waking life. Miscarriage, a bloody speck on the arm, a suffocating weight on the chest, or even just fatigue becomes an event of signification signaling to all the members of the dar the contiguity of an enigmatic other scene. The sense of this contiguity endows the day-to-day temporality of relationships with particular intensities: at least, this is how I understand the intriguing fact that virtually all my interlocutors who struggled with al-Qireyne emphasized that just going to sleep became a terrifying thing to do. For, lest we fail to notice it, this “imaginal” (Corbin 1976) other scene is like the obverse of the dar, an institution entirely built on “maximally embodied relations” and the value of time spent together. One has no choice but to face the dangers of al-Qireyne alone.

TEXTUALITY AND HEALING

Despite Manal’s successful cure from her problems with al-Qireyne by means of a hijab, the making and manipulation of these devices were the subject of fierce disputations (ikhtilaf) in the camp of Tyre. About half my interlocutors afflicted by al-Qireyne con-

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demned such practices in the strongest possible terms. Many of my friends in Tyre would describe themselves as mutadayyin, a label applied to a form of self-fashioning that involves everyday practices of authentication in pursuit of a modernist and rigorist form of Islam purified of al-taqalid (here, traditional practices and usages not in accordance with the orthodox sunna). For them, the dismissal of hujub and cognate practices indeed constitutes a perfect example of piety thus understood; in order to be rid of al-Qireyne they would advocate their own recitation (including in one’s dreams) of specific Quranic suras rather than the writing of the text by a learned stranger. What is it, then, that makes the use of hujub so reprehensible? Amal, one of the residents of the dar I lived in while in Tyre, explained that it is haram (forbidden) to sunder the text of the Quran, and she referred in particular to the healer’s alleged usage of abbreviating Quranic verses on hujub by writing down only the first letter of each word. As for Nasser and Ibtissam, they pointed to the sums of money involved, however small, so that the process of actualizing the text was tainted by the lure of material gain. The difference in semiotic ideology that sets mutadayyins like Nasser, Ibtissam, and Amal apart from hijab users such as Manal does not concern the paradoxical powers of the Quran’s words: their capacity, as text, to exist independently from, and travel across, an infinity of contexts and, at the same time, to forcefully reshape the particular context in which they are actualized is never in question. Rather, the controversies concern the work on the self that the mobilization of this potential requires—lest one forget that the Quranic text puts demands on al-Qireyne but on the supplicant, too. In other words, the recourse to the hijab sidesteps the demands one must put on oneself in getting rid of the perils of this alien intruder.

LAMIS

Lamis was my forty-two-year-old neighbor in Al-Bustan and landlady-by-proxy. Widowed ten years earlier at thirty-two, Lamis was said to be mu’attira, exceptionally unfortunate, and there was a strong sense that the orphanhood (yatim) of her children put obligations upon all, peculiarly on the men of the two more populous dars that dominated the community. Various discrete acts of kindness were performed to ensure that the family’s needs were met. Yet Lamis was an ambiguous figure, since gossip and “people’s talk” is always volatile around young widows and divorcées in the camp. The following account is based on two long interviews I conducted with Lamis in October 2006 and December 2007. As we shall see, there are significant crossings and reverberations between these two stories told one year apart. Lamis’s account of her dealings with al-Qireyne is extraordinary insofar as it starts at her very birth, with al-Qireyne’s persecution of her mother, Emm Ghassan (“My mother had it when she brought me into the world”). Lamis was born the fourth of five children—all girls save for the eldest, Ghassan—in alBass camp in 1964. Her mother had lost two newborn babies to the works of al-Qireyne before. Each time, Emm Ghassan had seen a cat laying on his back, suffocating, and finally dying, in her dreams. Upon waking up, she had found the newborn child dead from

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suffocation. Shortly after the birth of yet another new girl, Emm Ghassan had the same dream again and woke up to find that the baby was choking. Her family immediately took both of them to a sheykh who wrote a hijab and said that the name of the child, whom Emm Ghassan had called Wehde, like her previous, deceased daughter, had to be changed. The sheykh suggested the name “Lamis,” of which she herself says, “It suits me best, otherwise I would not live.” There was a price to pay for surviving, however: al-Qireyne passed from her mother to her (“She came from her to me. [. . .] I carried al-Qireyne”). Lamis spoke sparingly of her childhood and teenage years. When she was nine, her father left her mother to marry a Lebanese woman from Tyre. For Lamis it was still a burning wound, whose pain is compounded by the memory of the years of hardship that followed. Lamis described the abandonment by her father as the original event that cast her into a dark hole of destitution from which she had yet to emerge completely. Not incidentally, it is also the time when Emm Ghassan and her children were stripped of a permanent abode in al-Bass camp. They relocated to a rented ground-floor flat in the ghastly, ramshackle tenements of al-madine al-sana’iyye—a far less secure environment for a Palestinian refugee family at the onset of the 1975–90 war. Lamis got married in 1981 at the age of seventeen. Her husband, Khaled, was born and grew up in Rashidiyye camp, three miles down the road. There are significant differences between the social makeup of Rashidiyye and al-Bass, and intermarriage between the two camps was not very common. Lamis said that she was never fully accepted in Khaled’s family, where “they marry each other.” There might be some exaggeration in this statement since, ten years after Khaled’s death, ties were still strong enough for Lamis to take shelter with one of Khaled’s brother during the bombing of Tyre by the Israeli air force in the July 2006 war. In any event, the couple did not settle in Rashidiyye, counter to the norm of patrilocal residence still widely followed in the camps of Tyre, but next to Emm Ghassan in al-madine al-sana’iyye. This proved to be a fateful decision when, one year later, in June 1982, Israeli forces invaded Lebanon. After a fierce battle, Israeli forces took control of the area: “They asked us to empty the houses and to go to the rest house. We stayed, all gathered there, we came back, we found the houses destroyed” (October 2006). For a time, Lamis and Khaled moved up north to the small town of Choueifat, in the southeastern suburbs of Beirut. She gave birth to her first child there, a daughter, ‘Abir, after a pregnancy during which she “did not see anything.” Lamis and Khaled did not stay long in Choueifat, though: There started a war, in Choueifat [in 1983] between the Lebanese Forces and the Druze, a sectarian war. Again a shell fell upon the house, and it was gone.3 I had gone down for a visit to my husband’s sister’s, in Beirut, in Mazr’a. I was stuck. I had come for a visit and I stayed at her place for three years. After three years, we rented a house and stayed in Borj al-Barajna [camp], on the airport road. We lived there for nine months. The war between the Palestinians and the Amal movement started, also a sectarian war. A shell fell on the house, everything was gone [rawwah kul shi]. As for me, I had come to Tyre for a visit to

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my family, I was pregnant with Rabah. I came for a visit, I did not have any clothes, nothing. I had come for the day, and I was stuck. It was in 1986. (October 2006)

Lamis and Khaled ended up staying at his sister’s for two mortifying more years: “We stayed at his sister’s for five years. We had no home, we were without a home. We were guests [duyyouf] for five years!” (October 2006). It was after the birth of ‘Abir, and after the loss of the house in Choueifat, that Lamis started to see al-Qireyne: “After ‘Abir, I was pregnant again. I saw a woman hitting me on my back. And there was a group of people. When I woke up, I was tired. They took me to the hospital, and I had a miscarriage. It always happened when I was pregnant with boys. Four died like that. I would always see a woman, hitting me on my back or running after me, and I would run away and she would catch me. But not the same woman. I had four miscarriages, all boys, all in the same way” (December 2007). This is how Lamis dates some of these miscarriages later in the interview: “Once I had a miscarriage when there was a war between the Druze and the Phalangists. I also had another miscarriage when there was a war between the Murabitoun and the Ishtirakiyin. They took me to al-Maqassed hospital” (December 2007). Eventually, when, still living at her sister-in-law’s in Beirut, Lamis was pregnant with Rabah (in 1986–87), the neighbors told her that there was a Kurdish sheykh in the neighborhood who wrote hujub: “I went to him and he made a hijab for me. He put a lock [qufl] with an elastic band around my belly and he closed the lock. Thus the baby would not die. The sheykh forbade me to attend any ajir [sitting for the dead] or to go to the cemetery, because going to an ajir or a cemetery would break the hijab and the baby would die. I delivered Rabah” (December 2007). Two years later, Lamis gave birth to Shadouiya. She had not seen al-Qireyne during the pregnancy, even though she had not taken any similar precautions. For this reason, Lamis thought that she was rid of al-Qireyne. However, she shortly became pregnant again, and as she was in the fifth month, “I saw war in my dreams, some people attacking me and trying to take a baby from me. They were pulling it from me and me from them [henn yeshiddo wa ana ashidd]. Thereupon I woke up, found that the baby was dead. They took me to the hospital. It was a boy” (December 2007). Lamis did not get pregnant again for the next five years. With the cessation of hostilities in Lebanon in 1990, she, Khaled, and their three young children relocated to Tyre. For a while they lived in a small house, in Al-Bustan, belonging to a sister of Lamis’s who had emigrated to Germany. If anything, Palestinians became even more vulnerable socially, politically, and economically with the return to civil peace in Lebanon. The soft violence exerted against the refugee community in this period—in particular through the strict application, and the reinforcement, of the administrative apparatus excluding Palestinians from the labor market—is dramatically reflected in Lamis and Khaled’s tragic circumstances in those years:

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Our situation got back to zero [irja’na al-hala al-sefr], because we did not have money any longer, nor a house, nor clothes to wear. Everything was gone [kulo rah]. . . . there was no money. And him, he kept on being without work. He opened a butchery, people set up a butchery for him, it did not work. Then my sister and my mother, there was the little store of my sister’s husband, the one in Germany. They gave it to us, they sold it to us and we had to pay for it. We sold the stock and we gave them the money, and there were no more goods to sell. Then people loaned him money to buy a car. He started to work [as a collective taxi driver] on the line [between Tyre and Saida], he paid the loan back. And we were in my sister’s house, and there is our neighbor, the father-in-law of my sister who is in Germany. He gave us a piece of land and he told us “Build!” We borrowed some money, and I had some gold jewelry, I sold it, and we built [the house where Lamis currently lives]. And we got back to being very poor. We did not have anything, we did not have a chair or a sofa if a guest came. And from his strained circumstances (lit., “from being thus subjugated”) he died from a stroke, because of poverty [min al-faqr]. There was no money, nothing. He was thirty-seven and he died. He had a stroke because of the hardship [min al-qahr]. (October 2006)

Lamis was pregnant at the time, and she saw al-Qireyne one last, dramatic time: I went to a sheykh in al-Bass and he made a hijab for me. He said that I must not go to places where there are dead people or a cemetery, nor step on water that flowed from a dead body being cleansed. I also went to an old woman who made a lock for me. Then my husband died and I was pregnant with twins, a boy and a girl. I forgot what the sheykh had told me and I attended the funeral. The boy died but the girl lived. It was because of alQireyne. I saw my husband coming and taking the baby from me. The day after, I woke up and said that the baby within me was dead. They took me to the doctor and he did not know that I had twins. He did not see that one baby was dead. When I delivered, the boy was dead, and Mirwat, the girl, was alive. . . . The Qireyne that I have goes against boys, not girls. (December 2007)

In the ten years since Khaled’s death, Lamis’s woes have abated somewhat. Neighbors joined forces, in a discreet but decisive manner, to make sure that she and the children would remain good-standing members of the hara (neighborhood). Four years before our first interview, ‘Abir married Muhammad, a cheerful young man from dar Abou Rizq at the end of the alleyway; they had had a three-year-old son. They lived on the outskirts of Tyre but visited Lamis almost daily. She took pride in the self-discipline that she nurtured her children with, and in her efforts to grow them out of the environment of numbing harm they grew up in: “I don’t like to lower their morale, to weaken them, I like to make them stronger . . . from nothing I brought them up for ten years: I made a house, I got them furniture, I got a sofa for them, a room for them to sleep in, I got a computer for him [Rabah], I clothed them, I fed them. All this, it’s strength. And me, same thing. I make them walk on this path, that they be strong, look with hope and optimism [yakouno qawiye yanz.aro bi-amal tafaul].”

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T H E Q U E S T F O R S A N I T Y, B E T W E E N T H E L I V I N G A N D T H E D E A D

Lamis’s account might suggest at first sight that she is focusing on the events of al-Qireyne targeting specially male offspring to deflect doubts about her (and her mother’s) ability and commitment to fulfill a tightly defined female mandate to produce male offspring for the continuity of a social order that places women in a position subordinate to men. In this vein, Janice Boddy writes in her study of the zar cult in Sudan that “possession lifts from [the woman’s] shoulders a measure of the responsibility for social reproduction she is continually schooled to accept via the process of socialization” by redirecting the failure or delays in fulfilling this mandate to “a transcendental third, the zar, which replaces gender discourse as the current locus of meaning” (Boddy 1989, 189–91). I agree that this type of analysis captures part of the truth some of the time, including in Lamis’s case, but it still falls short on a number of counts. Most important, for me, it seriously underestimates the power of the oneiric images in which al-Qireyne manifests itself to not only symbolize, but indeed to effect, actual change in this world. I do not intend here to engage the question of the ontological reality of the imaginal, which I am in no better position to assert than Boddy and others who have written on spirit possession. Rather, I am referring to the power of al-Qireyne, in its immediate aspect of dream images, to enter into a plurality of semiotic processes so as to thicken the spaces of connectivity through which the subject is tied to others and to the world. In this regard, I further want to suggest that an account such as Lamis’s should not be framed just as a “counterhegemonic” expression of “resistance” to, and “consciousness” of, female subordination (Boddy 1989, 341–48), but rather that it bespeaks a more inclusive quest for sanity. With this vocabulary, I think specifically of Susan Wolf’s gloss of the desire to be sane as “not a desire for another form of control [but] rather a desire that the self be connected to the world in a certain way—we could even say it is a desire that one’s self be controlled by the world in certain ways and not in others” (Wolf 1987, 55, quoted in Asad 2003,73). I also seek to attend, if obliquely, to Lamis’s self-avowed struggle with “nerves” (a’ssab), and to the sense pervading her account that she brought children into a mad world—a world in which three times in a row she left her house to return to a pile of debris; where she found herself a “guest” (dayf) for five full years; where her refugee husband’s capacity to make a living was severely restricted by law—a world, that is, that long seemed to reject or even actively cut ordinary connections. In her accounts of al-Qireyne’s attacks on the womb, we see a series of unruly signs and interpretive moves where a woman is never entirely certain of the exact meaning of the dream or the experience of suffocation or of what in her own actions might have triggered al-Qireyne to act in this vengeful manner. Instead of a sovereign subject who can impose meaning on her experiences, we see a subject being born, in part, through the encounters with these signs that are remarkably domineering and unruly. At the simplest level of interpretation, one might say Lamis comes to attribute the loss of her pregnancies to al-Qireyne (“I have/had al-Qireyne”) because fragments of a semiotic

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ideology of dream images that circulate in the camps invite such an association. When seen from this perspective, the meaning that al-Qireyne acquires is dependent on the conventions or tacit, shared agreements that underwrite symbolical thought. The habitual association between the adverse reproductive events that women suffer and the mischief of al-Qireyne actualizes the claim that some dream images originate neither in the self nor in communication with others but in another realm—‘alam al-mithal, the “imaginal” (Corbin 1976)—and that such dreams can have a direct effect in the waking world: in this case, they create a crisis by curtailing the ties of kinship (al-rahim) in a most literal sense— the physical womb (al-rahim) failing in its life-giving capacity. But there are more ways that emerge in Lamis’s account in which the image events of al-Qireyne hinder, enable, or complicate the spaces of connectivity of al-rahim. Take, for example, the very first episode Lamis mentions (that concerning Emm Ghassan bringing her into the world) and the last (the stillbirth of the male twin in the aftermath of Khaled’s death), which strongly echo each other. In both cases, a human deed emerges in hindsight as what triggered the nonhuman agency of al-Qireyne: the naming of the newborn child “Wehde,” after her dead sister, or “Khaled,” after his dead father; and the performance of funerary rites for her husband by Lamis when she was pregnant, bringing her in physical contact with the water used to cleanse the corpse. In these episodes, the misfortunes heaped on the women through the agency of al-Qireyne turn out to be, in fact, the results of their own actions. Conventions for expressing piety toward the dead (naming a newborn after a dead sibling, performing funerary rituals) reveal themselves to be transgressions of a yet-unknown order leading to the miscarriages. Surely Emm Ghassan and later Lamis invested these conventions with personal meaning, trying to express their lasting attachment to actual, departed relatives. Participating in the funerary rituals may also have been for the latter a matter of displaying the policed behavior expected of her as a young widow. Or perhaps, as Lamis suggests, she was simply “forgetful” of the sheykh’s advice. In any event, these acts, conventional in themselves, unleashed another force: the memory of departed relatives took on a new, threatening aspect manifested in the onslaught of al-Qireyne. It seems that the contiguity between a person and her name, or the spatiotemporal contiguity with the dead body essential to the mourning rites, becomes a semiotic channel or medium for another type of contiguity: that of the world of the dead in life, effectuated in the ghastly works of al-Qireyne. A new, opaque, and treacherous property of the signs habitually used to express love and respect for dead relatives is disclosed. Hence, it seems to be the case that the irrepressible visitations of al-Qireyne allow for a larger commentary, or analytic, on the bindings of al-rahim or ties of kinship, and in particular on the ethical question—which is unremitting in its demands in a refugee community that has been, and continues to be, chronically vulnerable to war, homelessness, and destitution—of what devotion is due to the dead, however untimely, and what to the living in the here and now. It is also apparent, I believe, if we consider the last encounter Lamis had with al-Qireyne, by means of a dream in which her recently deceased husband, Khaled, took from her one of the twins (the male) she was then carrying. This striking and

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extraordinarily condensed motif evidently brings together al-Qireyne and al-rahim, but in a specific fashion that deserves minute attention. I want to argue against the temptation of resorting to a ready analytical template that would suggest that the motif exhibits the properties of a somehow traumatic image: that we can take for granted an indexical relation of contiguity, for example, between Lamis’s unsettling dream and the event of Khaled’s death. I think we must also resist the idea that Khaled’s dreadful action in the dream was an expression of some deep-rooted, ambivalent feelings Lamis would have harbored, and repressed, toward him. The dream does have these properties if we privilege a semiotic ideology of the imaginary that makes the modern, secular self the ultimate source and referent of its own oneiric experience. But Lamis inserts this dream in the series of her encounters with al-Qireyne, and in doing so, she also draws a very different set of connections. Her statement “It was because of al-Qireyne. I saw my husband coming and taking the baby from me” expresses a specific kind of seeing. “Al-Qireyne” functions here as a shifter that both indicates and, perhaps, opens up the rule of use of the image seen. In this context, it specifically underscores, I believe, the divorce or disjunction between the indexical and iconic properties of the motif—that is, between the two different modes by which the dream image relates to the world. I said earlier that for my interlocutors, the actual forms in which al-Qireyne manifests herself seem to be largely a matter of cruel whim on her part, but her appearance in a dream attests to her ability to effect changes in the world. Thus the imagery of al-Qireyne enables semiotic processes in which contextual (here causal) contiguity operates independently from resemblance or similarity. It makes it possible for al-Qireyne to mediate, in this case, a disjunctive relation between the memory of a dearly beloved departed relative and the evil content and significate effect of the dream. I do not want to imply that as a result the motif is voided of all iconic power. But iconicity operates in a concurrent place of its own, further determined, it seems to me, by contextual elements extraneous to the dream situation proper. There is the fact, of course, that the reference to “my husband” in the dream is also a reference to the father of the child he carries away. There is also the later revealed circumstance that Lamis was pregnant with twins, and thus that Khaled had left one of the two children, Mirwat, in the mother’s care. As indicating the presence of al-Qireyne in the scene of devastation, the dream image is that of a killing. As the icon of a husband gone before his time, the dream is a mournful scene of parting that also bespeaks the tenacity of a bond between the dead and the living.

CONCLUSION

There is another thread in Lamis’s account, one that concerns the devastation of refugee lives exposed to constant abuse from war, homelessness, and destitution. Lamis claimed, quite convincingly to me, that it is al-qahr—the throes of degradation, the humiliation of homelessness, hospitality, and unemployment—that killed Khaled before al-Qireyne took over his physiognomy and carried off his unborn child to the realm of the dead. And although Lamis’s miscarriages were bound up with her oneiric life, she also pinpointed,

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in parallel, their occurrences to specific rounds of urban fighting in the fifteen-year-long war of Lebanon. Indeed, the two threads seemed to merge when, upon dreaming of a war scene in which a mob drags an infant from her arms, Lamis miscarried on the way to the hospital. Surely Lamis’s and others’ claim that this last dream is a dispatch from al-Qireyne, endowed with the same actual lethal potency as the wars and displacements that killed Khaled, is not supported by the world as it is currently organized (c.f. Povinelli and DiFruscia 2010). This world is more readily able to receive as truth, instead, the notion that such dreams, and the somaticized responses that accompany them, are Lamis’s own compulsive, and morbid, elaborations of a string of actual, shattering experiences. Yet the compassionate demand often made by mental health NGOs and echoed sometimes in the writings of anthropologists (e.g., Fischer 2007) that in order to be helped people like Lamis would have to learn to take responsibility for such dream images misses something: namely, that relinquishing to al-Qireyne all claims over such images is also a way for her victims to recast their ties to others and to the world in a unique manner. The French psychoanalyst Jean Laplanche famously coined the concept of “enigmatic signifier” to refer to the messages that the infant receives from the adult other, and through which she is brought into the intersubjective world while not having herself the language to make sense of her experience (Laplanche 1989, 127–33; 2005, 136–39, 169– 75).4 As I understand it, this concept allows Laplanche not only to point out the original presence of the other in the unconscious, but also to draw attention to an aspect of signification, and of relatedness, “before a subject, induced into language, becomes a subject as such” (Povinelli 2001, 402). While the enigmatic signifier for Laplanche concerns primarily the early stages of life, it “comes to the fore,” he also writes, whenever “the signifier [is] designified, or lose[s] what it signifies, without thereby losing its power to signify to” (Laplanche 1989, 44–45; emphasis in the original). Laplanche thus writes elsewhere of the binding “enigma” of “the message conveyed to us by the other in taking leave of us once and for all” at the moment of dying (2005, 175). The irruptions of alQireyne, it seems to me, are enigmatic signifiers in this sense. Or, perhaps, should we say that al-Qireyne is a semiotic operator (an “interpretant”) that, by producing signifiers with no reachable signified, also summons the memory of very primordial forms of relationality? Incidentally, that, to me, would excuse—pace my dear friends Nasser, Ibtissam, and Amal—the caress of a hijab on a sleeping body.

N OT E S

1. In particular, al-Qireyne is mentioned neither in the monograph of Julie Peteet (1991) nor in that of of Rosemary Sayigh (1994). 2. All names of individuals and some names of places have been changed. 3. The war that Lamis mentions opposed the Christian, conservative Lebanese Forces to Walid Jumblat’s PSP for the control of the Shouf Mountains in the wake of the Israeli withdrawal from the area in August 1983.

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4. “[The schema] represents an encounter between an individual whose psycho-somatic structures are situated predominantly at the level of need, and signifiers emanating from an adult. Those signifiers pertain to the satisfaction of the child’s needs, but they also convey the purely interrogative potential of other messages—and those other messages are sexual. These enigmatic messages set the child a difficult, or even impossible, task of mastery and symbolization and the attempt to perform it inevitably leaves behind unconscious residues” (Laplanche 1989, 130).

REFERENCES

Asad, Talal. 2003. Formations of the Secular: Christianity, Islam, Modernity. Stanford, CA: Stanford University Press. Boddy, Janice. 1989. Wombs and Alien Spirits: Women, Men, and the Zār Cult in Northern Sudan. Madison: University of Wisconsin Press Canaan, Tawfic. 1927. “The Child in Palestinian Arab Superstition.” Journal of the Palestine Oriental Society 7 (4): 159–86. Corbin, Henry. 1976. Mundus Imaginalis, or the Imaginary and the Imaginal. Ipswich, UK: Golgonooza Press. Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Drieskens, Barbara. 2008. Living with Djinns: Understanding and Dealing with the Invisible in Cairo. London: Saqi. Fassin, Didier, and Richard Rechtman. 2009. The Empire of Trauma: An Inquiry into the Condition of Victimhood. Princeton, NJ: Princeton University Press. Fischer, Michael M. J. 2007. “Epilogue: To Live with What Would Otherwise Be Unendurable: Return(s) to Subjectivities.” In Subjectivity: Ethnographic Investigations, edited by Arthur Kleinman, João Biehl, and Byron Good, 423–46. Berkeley: University of California Press. Laplanche, Jean. 1989. New Foundations for Psychoanalysis. Oxford: Basil Blackwell. ———. 2005. Essays on Otherness. London: Routledge. Peteet, Julie. 1991. Gender in Crisis: Women and the Palestinian Resistance Movement. New York: Columbia University Press. Povinelli, Elizabeth. 2001. “Sexuality at Risk: Psychoanalysis Metapragmatically.” In Homosexuality & Psychoanalysis, edited by T. Dean and C. Lane, 387–411. Chicago: University of Chicago Press. Povinelli, Elizabeth, and Kim Turcot DiFruscia. 2010. “Shapes of Freedom: A Conversation with Elizabeth A. Povinelli.” Altérités 7 (1): 88–98. Sahlins, Marshall. 2013. What Kinship Is—and Is Not. Chicago: University of Chicago Press. Sayigh, Rosemary. 1994. Too Many Enemies: The Palestinian Experience in Lebanon. London: Zed Books. Wolf, Suzan. 1987. “Sanity and the Metaphysics of Responsibility.” In Responsibility, Character, and the Emotions, edited by F. Schoeman, 46–62. Cambridge: Cambridge University Press.

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SECTION 2

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Much recent and long-standing work in the anthropology of biomedicine has critically engaged the power of biomedicine to reshape responses to illness and suffering. Critiques of medicalization, however, have had a tendency to privilege the very vocabularies of biomedicine and public health that they seek to dislodge, even as scholars recognize that aspirations for recovery and the quest for cure are also given expression through a range of vocabularies available in contemporary social life, and that the techniques to manage the population have differed across contexts, as our discussion of Foucault and Canguilhem in the introductory concept note shows. Curiously, while studies of biomedicine have increasingly challenged the doctor–patient relationship as the privileged site to study medical intervention and therapeutics, the clinic itself continues to be taken as a stable entity primarily studied in terms of the production of medical knowledge and authority. The following ten chapters not only unsettle the boundaries between medical, legal, and pharmaceutical spaces but also ask, What social forms do aspirations for justice and recovery take? How are affliction and suffering enfolded in complexes of institutions, what is the labor entailed in the quest for cure, and who or what is to be recovered? The collective accomplishment of these chapters is that they show the ways in which responses to pain might be made possible in institutional complexes, while also illuminating the contradictory experiences of the social institutions of law and medicine by those living in wounded worlds. The first set of chapters, by Sophie Day, Julie Livingston, and Jonathan M. Metzl (chapters 8, 9, and 10, respectively), invite us to rethink both the clinic and psychiatric knowledge in terms of the affects surrounding care, disease, and violence. In her chapter “Waiting and the Architecture of Care,” Sophie Day (chapter 8) takes the quotidian experience of waiting as the entry point to explore the tensions of subjection and citizenship attached to the U.K. National Health Service at a time when its very existence is in question. The NHS is a key site for polemics over the inefficiency of an overcentralized bureaucracy, crystallized in the notion of waiting. Focusing on the experiences of patients and staff in cancer-care services, however, Day subtly shows how waiting produces fleeting moments of noticing and responsiveness as staff, alongside patients, experience being caught within a “system” even as the impersonality of bureaucracy protects staff against the claims of patients. Scholars have noted that the idea of abstraction and the notion of equivalence are integral to the modern liberal state and that they rest on uncertainty; as such, suspicion suffuses the space between law and its application (Asad 2004). Day, however, demonstrates that abstraction and substitutability can create a feeling of safety and trust, albeit one that is “inhuman.” Drawing upon factorylike images, such as the conveyor belt, that permeate patients’ talk of their treatment, Day fascinatingly highlights

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the simultaneous feelings of reassurance and chilling subjection attached to the machine aspect of care. Here, the quest for cure involves a picture of care that conjoins the human and the machine: on one side, the triage that comes with responding to different needs; and on the other, the reassuring indifference in which one is held, for good or for ill, in a form of belonging. In the next chapter, “The Social Phenomenology of the Next Epidemic,” Julie Livingston (chapter 9) vividly describes the predicament of living and dying with pain in a cancer ward in Botswana. In this setting, pain management in cancer care cannot be understood under pharmaceutical politics premised on policing access to abundant pain medications, as in Britain or the United States. Instead, clinical oncology in Botswana proceeds in a context in which concerns over pain have been historically marginalized in public health and in which clinical care is beset with chronic drug shortages. The scarcity of pain medications, however, meets a world in which striving for silence in the face of pain is one aspect of learning what pain is. In descriptions that render concrete and visceral painful medical interventions such as amputations and bone-marrow biopsies, Livingston shows how the silences surrounding pain and the quiet anxieties over dying that suffuse these scenes are in some senses palliated through the social effects of laughter. Laughter, as Livingston says, erupts when the physicality of pain and the anxieties surrounding death become unbearable for patients and their relatives, as well as for the clinical staff. Here, we see how laughter can momentarily secure aspects of social life from within the dying space, and thus we see how the dying space itself participates in the making of social life. It is not here a matter of shared conventions but of the whirl of organism in which this response to pain is elicited from the body or from bodies in concert with each other in an unbearable situation. Whereas Day and Livingston take the clinic as a reflective prism to explore the contradictory affects around care, pain, and dying within institutional spaces, Jonathan M. Metzl, in his chapter, “Living and Dying in Mental Health” (chapter 10), takes as his object the emotional charge surrounding the association of serious mental illness and violence in the United States. Metzl asks how anxieties over race may surround the current debates over guns, violence, and schizophrenia, even as such anxieties are stripped of evident racial connotations. In an acute analysis, Metzl demonstrates how schizophrenia mutated from a disease of white docility to one of black violence and hostility in the 1960s, coinciding with the civil rights movement. Conflating Black Power and madness, psychiatric discourse in tandem with state institutions authorized a narrative of black activist politics as potentially violent and insane. Here, in contrast to Day’s discussion of citizenship as one of an established belonging that is endured—in the form of bureaucratic care—we see how claims to belonging may be cast as insane to maintain the social order. While Metzl shows us how an aura of violence surrounds mental illness in today’s debates over mass shootings, we might also see within this history the dark side of how institutions and expert opinion work together to reproduce the nation. The second set of chapters—by Shao Jing; Ian Harper and Nabin Rawal; João Biehl; and Adriana Petryna (chapters 11, 12, 13, and 14, respectively)—invite us to examine how

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unequal distributions of disease and death are produced and responded to by markets, institutions, and expert knowledge. In his chapter “The Wealth of Populations,” Shao Jing (chapter 11) analyzes the conditions that made possible the AIDS epidemic in the early 2000s in rural villages in Henan Province, China. Shao cogently argues that to take rural poverty itself as a predictor of vulnerability to HIV infection would not only eclipse the multiple forces that contributed to producing the epidemic, but also fail to see how older techniques of the management of the population under state socialism, such as the “hukou” system of household registration, created the very population called “rural” and subjected this population to devastating famines resulting in massive death. The Henan provincial government’s promotion of the plasma fractionation industry to foster rural development in the context of a population “surfeit” and a scarcity of arable land was made possible through these older techniques. Promotion of plasma harvesting to impoverished villagers occurred through vocabularies of both gift and commodity, while villagers gave frequent donations of plasma at the risk of contracting blood-borne diseases in order to inject cash into agricultural production. Here, as government officials engaged in a deliberate economy of populations on the ground, we see the risk of exposure to what was a deadly disease intimately entangled with the reproduction of the household. In their chapter, “Living and Dying with Mycobacteria,” Ian Harper and Rabin Rawal (chapter 12) move us from a perspective centered on the nation-state to explore how pharmaceutical politics shape the conditions for local markets in drugs. Focusing on the effects of the National DOTS program on the availability of TB drugs in the marketplace in Nepal, they begin with the seemingly simple empirical question, What is the range of drugs available and used for the treatment of tuberculosis? Harper and Rawal meticulously show how the implementation of the WHO-mandated DOTS program helped set in motion the international procurement of TB drugs. Although this may have come to the detriment of the national pharmaceutical industry, the increased availability of fixeddose combinations of drugs has meant that there are fewer uncombined medicines in the marketplace, which, from a public health perspective, is significant in the prevention of the transmission of MDRTB. While the DOTS program may be heralded as a success on the basis of self-reported treatment and cure rates, Harper and Rawal show a more complex picture in which effects on disease transmission may not stem solely from deliberate actions oriented toward treatment, but rather from the contingencies of pharmaceutical politics itself. In the next chapter, “The Juridical Hospital,” João Biehl (chapter 13) examines the increase in right-to-health litigation in Brazil to ask, What are the sites for claiming political rights and addressing political failures in Brazil today? Right-to-health litigation emerged in Brazil, Biehl argues, in the aftermath of the AIDS treatment program, which oriented public health toward pharmaceutical treatments rather than prevention. Creating a database of lawsuits against the state of Rio Grande do Sul, Biehl and his research team have shown that roughly two-thirds of the medications were already on government drug formularies and the majority were low-cost drugs for chronic conditions. Patients’

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resorts to the judiciary not only expose the administrative failures of the state but also challenge existing treatment protocols based on cost-effectiveness or risk-benefit ratios drawn from epidemiological data. In this interpenetration of the domains of health care and law, the clinic is dispersed into the judiciary, where the needs of patient-citizens are evaluated in a case-by-case manner. Biehl resists the immediate negative valuation of this litigation in terms of spiraling administrative costs and instead allows us to see how the hope invested in medical technologies dovetails with hope in equality before the law, such that “entering justice” is folded into the quest for cure. Here we can see the knitting of identity and existence in a related but different way, from the cases of the three different constellations of deaf cultures, autism, and AIDS activism in the United States in our introduction. Adriana Petryna’s chapter, “The Right of Recovery” (chapter 14), bundles this emerging legal subject of health litigation with other subjects—such as the experimental subject—to explore how the project of care seeking has been displaced from the privileged site of the doctor–patient relationship to other institutional domains. While recovery here is understood specifically in terms of the recovery from disease, Petryna’s three ethnographic cases bring us into the experimental and juridical settings in which patients stage acts of compliance and noncompliance to experimental therapies in the hopes of continued treatment. Here, the institutional conditions for recovery from disease are not guaranteed. Indeed, Petryna’s discussion illuminates how contrasting pictures grow for institutional complexes in different contexts, indexing the specific conditions of medical care and claims to rights in these settings: contrast, for instance, the conveyor belt in Sophie Day’s chapter with, in Biehl’s chapter, “open source.” Her descriptions of the ways in which individuals cobble together various subject positions—experimental, legal, and clinical—illuminates how the search for cure impels individuals to create their own therapeutic geographies. Under these conditions, idiosyncrasy in medicine is intensified as anticipated by Canguilhem, and the clinic must be rethought in terms of the transnational connections that contribute to its dispersal over multiple sites. In the final set of chapters, Sameena Mulla, Erica Caple James, and Angela Garcia (chapters 15, 16, and 17, respectively) expand our imagination of recovery beyond one of recovery from discrete diseases. The chapters ask, What has been wounded, and what is to be recovered? What social forms does recovery take? Working with sexual assault victims in Baltimore, Sameena Mulla, in her chapter, “Just Living” (chapter 15), perceptively asks what justice is aspired to outside of and perhaps beyond the formal legal system? Mulla describes the way in which sexual assault victims voice a desire for a kind of quotidian justice: “just living,” the desire to momentarily be free from harm or from a part of their lives in which the threat of violence arises and shadows the whole of their existence. Stepping outside the boundaries of the formal legal system, Mulla finds that the imagination of recovery is deeply tied to a future in work, and yet the very conditions in which livelihoods are sustained may be the basis for vulnerability: reestablishing connections with kin to find work exposes victims to boundary-violating flirtation; getting to and from

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work in “hack” taxis exposes them to sexual assault. To be momentarily free from the shadow of violence here entails a world in which the sexual contract is honored, as is the contract of employer and employed in which labor is not deeply gendered. Here, we see how recovery is not for any discrete end, but rather to live life as recovered, in the simplicity of receiving a paycheck and being out from under the shadow of the harms of men. In the next chapter, “ ‘If You Remember, You Can’t Live,’ ” Erica Caple James (chapter 16) also asks what it might be to live life as recovered in spaces marked with devastation and ongoing insecurity. In the aftermath of the coup of Jean-Bertrand Aristide in Haiti, the coup apparatus enacted a style of violence that sought to shred the very fabric of life of those whom the apparatus deemed targets. James explores the psychosocial treatment programs established by international humanitarian organizations in Haiti as “purgatorial spaces” that sought to transform victims’ relationship to themselves. Significantly, while Haitian psychiatrists and aid workers were doubtful about the clinical utility of the diagnostic category of PTSD, its diagnosis allowed for access to a whole array of assistance offered by international humanitarian organizations. Taking us through the biography of a man and a woman, James shows contrasting ways in which these programs were or were not absorbed into individual lives and in the healing of the social fabric. While narration of past events as past within a framework of human rights might be therapeutic for some, for others, the enduring of ongoing violence in everyday life impels a need to forget in order to survive. Through conversion experiences that form in the space of treatment or in the church, we see how the labor of recovery involves death and rebirth. In the final chapter of this section, “Death as a Resource for Life,” Angela Garcia (chapter 17) asks how loss might contain the seeds for life. Drawing us into the fraught lives of a mother and daughter in northern New Mexico’s Española Valley, Garcia shows us how today’s intimate connections of addiction, incarceration, and institutional neglect are as much a part of the present-day political economy of the region as they index the death of a way of life for Hispano communities. In the lives of this mother and daughter, institutional languages are projected into the intimate labors of caring, even as these labors are criminalized by these institutions. In this world, medicine is heroin, and “scoring” heroin for a mother is a labor of love, showing medicine as containing elements of both healing and poison. Allowing herself to be incarcerated for drug possession in place of her mother, a daughter expresses her commitment to her mother through the language of law, an “oath,” which she endures even at the cost to her other intimate relationships and at the cost of an intimacy with herself. Here, we appreciate how the very seeds for life might be planted within a zone of death, yet what grows is not a redemptive narrative, but rather a complex of intimate estrangements in which loss and hope are intertwined. These ten chapters together present us with a new way of looking at the imbrications of affliction and suffering with institutions and markets, while also ushering forth a discussion on the social forms that justice and recovery might take, adjacent to institutions. In attending to the labors involved in the search for cure and the aspirations for

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justice, we come to see how life and death are embedded in one another as also the way in which the natural and the social might be knitted into each other or fall apart.

REFERENCE

Asad, Talal. 2004. “Where Are the Margins of the State?” In Anthropology in the Margins of the State, edited by Veena Das and Deborah Poole, 279–88. Santa Fe, NM: School of American Research Press.

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8 WAITING AND THE ARCHITECTURE OF CARE Sophie Day

The U.K. National Health Service (NHS) provides universal care that is free at the point of delivery to the vast majority of residents. Traditionally, it supplied well over 90 percent of the services in the country, topped up with private care that is concentrated in London and other urban centers. Since the 1980s, a raft of reforms has introduced markets and new management, accelerating dramatically with the 2012 Health and Social Care Act. NHS markets will be open to all “qualified” or “willing providers” from 2013, and public organizations will be able to raise funds in the same way as the private.1 In this moment of turbulence, the NHS attracts intense public concern in the media, in parliamentary debates, and during street protests. In the 2012 summer Olympics, Danny Boyle’s opening ceremony depicted the NHS as a symbol of the best of the nation, which attracted commentary on the efficiency, sense of fairness, and equality of the NHS, and also on the patriotism of service, associated with the war dead in whose memory we came together to pool social risk and give citizens equal access to what was theirs by right.2 Post–World War II, Britain and other governments systematically turned to the reduction of inequalities between rich and poor, the redistribution of purchasing power through wage policy, and an expansion of public services. In this story of collaborative rebuilding, we were privileged to pay the taxes that would permit such a future, and rationing, notably of food, was a way of ensuring something for everyone, now and in the future. Danny Boyle’s vision of sentimental domesticity, unquestioned and undifferentiated belonging to the nation epitomized by an NHS, had a sharper edge. It asked whether this future has gone. Did unique wartime destruction provide the only galvanizing force

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capable of such radical redistribution, and will continuing austerity dissolve the last remaining commons in the United Kingdom? At present, it is impossible to know whether the NHS was dissolved when “providers” and “purchasers” were formally segregated under Thatcher’s government during the early 1980s or when the 2012 legislation required competitive tendering for services; it is impossible to know whether the NHS still exists and what the tipping point will prove to be. Now, we wonder if the postwar achievements were exceptional and, once gone, will be lost forever. Simultaneously, the media have been full of the real-time inequalities and failures of service experienced by those requesting care. They contemplate dying as you wait for a response, and the arbitrary rationing of life and death. Reports and fictionalized stories about the impossible inefficiencies of an overcentralized bureaucracy, by far the largest employer in the United Kingdom, display the worst of the nation: the lack of care and recognition that serves only to confirm patients as alienated and subordinated subjects of an overweening state. This chapter asks how the NHS attaches a sense both of citizenship and of subjection, recognizing one who belongs “cradle to grave” alongside the demeaning humiliation of a claimant, often at one and the same time. It probes the nature of an “untenable hyphen” that links and separates nation and state (Aretxaga 2003), citizen and subject, by exploring the topic of waiting.3 The NHS wait is visible to all and is one of the most prominent topics of complaint. Newspaper, radio, and television coverage anatomize the waiting for a referral or an intervention, unnecessary delays and government targets, average waits by region and waits on-site—to register your position in a queue, to see the health-care worker, to obtain results and drugs, to receive a letter or another appointment. Waiting lists, waiting rooms, and queues aggregate people in ways that can seem archaic by contrast with less visible or fast-moving queues online, in games, and during other forms of play. For the supplicant, waiting is dead time, a form of entrapment that accentuates inferiority and steals away your life, while, for managers, it can be counted and audited in the way of other commodities. In all its negative forms, waiting is associated with the “other” side, as in Churchill’s well-known observations about queuing and the Cold War divide and more recent anatomies of the end of socialism. Everyone apparently considers waiting a bad thing, and many anticipate that waits for health care will soon belong to the past. Some consider that waiting will be dissolved through market mechanisms such as pricing that mediate supply and demand in alternative ways. It is also possible, however, that the end of waiting will empty out or eviscerate the NHS. Waiting has been considered definitional of the worst aspects of bureaucracies, but I shall suggest that it is more than simply a refusal of hospitality or service. Times, I suggest, are not simply emptied and stolen. On the contrary, ordinary processes of bargaining with what there is (Berlant 2008; Das 2007) build an uncomfortable apprehension of the hyphen between belonging and subjection, the triage of equivalence and equality, and the improvisation of forms that have paced gender and generation, class and race, in specific ways through the NHS over the past seventy-five years.

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Anthropologists have called for attention to the materialities and indeterminacies of bureaucracies in an attempt to avoid official perspectives that tend to be formulated from a bird’s-eye view in terms of success and failure, goals and rationality. In this context, a view of waiting that is prospective (Hoag 2011) may suggest that the practice carries capaciously an assortment of expectations and hopes as well as frustrations. A concept of generic waiting may both capture this indeterminacy and also point toward the particularities of the NHS, which is seen as a generic service, a bureaucracy, and a form of care. It is not supposed to be branded, and it also stands for values associated with a second meaning of generic as “fundamentally general, relating to all.” A third sense of the term captures the indeterminacy of what is unspecified, as in a generic noun, like worker, that does not specify gender. Generic waiting may suggest bureaucratic delay and depersonalization as well as the promise of care. I ask what waiting does in the NHS by reference to preliminary research in cancer care with my colleague, Helen Ward. I draw on vignettes from our work mapping and observing the services and from our conversations with patients. This example presents early findings from a larger study of patient experience (2011–14), and it is framed by reference to our long-standing engagement with the Praed Street Project. Our research on what I am now calling patient experience informed the provision of services for sex workers that in 1991 became part of the NHS Trust, within which we are now working once more.4

A N T H R O P O L O G I S T A S B U R E A U C R AT: W O R K I N G W I T H T H E N H S

My earlier research in this NHS Trust began when I joined the sexual-health clinic in 1986. I had an honorary contract that allowed me to see patients and their medical notes. I was to follow standard protocols and liaise closely with other staff, and, with time, I realized that our work fell well within the range of NHS service work and research. I described some of the standard procedures and spaces in the traditional chapter 1 of my monograph On the Game, and discussed the difficulties of separating research from a politics of domination, continuing practices of medicalization, and an often-invidious set of conventions for displaying and narrativizing the self (Day 2007). I was unable to explore relations between patients and staff in greater detail and felt dissatisfied with this framing. As indicated, health care has changed in the last thirty years. Markets have been created within the NHS, investment has been followed by disinvestment, and administrators largely responsible to clinicians have been replaced by an extensive structure associated with the ethos and practices of a widespread new public management in place of the previous and more minimal bureaucracy. This new, entrepreneurial governance favors competition, choice, decentralization, and various preferences for participation and the market mechanism.5 In consequence, strategic direction can look like a race for ghoulish business and profits, as distasteful as the previous procedural form.6 Nonetheless, marketization persists in place of the previous impersonal, bureaucratic “paradigm that

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failed.” Consider the following notes from a service evaluation: “2012: a chief strategist notes, ‘we have half the cancer market in this region.’ No one visibly bats an eyelid and everyone understands that an expanded market share might attract funds and possibilities to improve services.” Mystified by the NHS I have rejoined, I still find the mundane routines, gestures, and small asides familiar. The procedures or equipment that did not work in the 1980s, such as paper records and endless, replicated IT systems, still fail to do the job. As others have noted, anthropologists, too, are bureaucrats. I had participated in the allocation of time and resources as well as the form and content of a range of procedures as though I were a health or social worker and a gatekeeper: how much time for what, who was seen first and last, the precise contours of a condition that precluded or permitted intervention. Like other staff, I found this position difficult to occupy, and I constantly displaced it backstage, up the ladder, and onto a system that did not seem to be peopled. Considering my unease about the traditional arrival and scene-setting chapter of On the Game, I find now that stranger sociability is as important within the NHS as it is outside, where most of my previous discussion about strangers and migrants in the world of sex work was located.

P AT I E N T S ’ E X P E R I E N C E S

The waits are of many kinds. Even physical waiting rooms differ from one another. You can simply turn up and wait to be seen at the sexual-health clinic I knew in the 1980s, although most outpatient clinics run an appointment-based waiting list. Other spaces such as the chemotherapy units we observed in 2012 are rooms for treatment as well as waiting. In some clinics, patients take numbered tickets as place markers of the ordinal sequence; in others, they rely on receptionists to use their medical records to mark the order in which they registered. Inpatients will wait for medication, food, or ward rounds, pushing a bell or calling out for attention at other times. Many people wait in one place and then another: perhaps you wait to have your bloods taken, to see an oncologist, for your prescription to be filled in the pharmacy, for a chair in the chemotherapy suite, and still get out within the day. You might also do all this work and leave empty-handed, with a new appointment on the horizon. Waiting was not differentiated strongly from the usual bureaucratic inefficiencies: delays, lost notes, missing letters, nonexistent appointments, unsigned prescriptions, and incorrect treatments. Staff, students, patients, companions, and others such as hospital visitors complained about these issues in very similar terms. But for patients, waiting often served as a cover term for their problems, and it also carried a sense of expectation, an orientation toward the impossible fantasy of finding someone who would take responsibility for your care and prevent or solve these problems in the future, a person who might also be thinking about you in between visits. Helen Ward and I were asked to feed patient voices into a meeting evaluating services

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for all staff in cancer-care. We spoke of “staff versus the system,” in keeping with several other accounts. Michael Herzfeld, for example, drew attention to practices of reification where the “system” appears to be an impersonal force on which you can blame all sorts of things, whether you are an official or a supplicant (1992, 147–48). It is the system that is to blame, and functionaries commonly wave vaguely in the distance as they blame another department or the system in general. As Herzfeld emphasizes, there is no disembodied bureaucracy in reality, and bureaucrats are not really a race apart, so we must see this characterization as a cliché requiring analysis. Appropriately, Herzfeld notes that managers travel in a different direction; they find fault in and replace their personnel, thus reproducing the tyrannies of the system as a whole. Patients, however, distinguished health-care workers from managers and the front line from backstage. Scarcely did we hear a negative comment about any frontline, flesh-and-blood person. The problems experienced were real enough. Transport could create insuperable hurdles. A woman waited with her husband and her niece as he had his chemotherapy; somehow or other they were to come fourteen days in a row even though he could not use public transport and the hospital no longer permitted the chemotherapy unit to sort out hospital transport. A separate department assessed and organized the coming and going. In another chemotherapy unit, a woman was supporting her mother. When they last came, she had contacted Transport to help travel from the hospital entrance along the many corridors. Two hours of waiting later, she simply stole a wheelchair and brought her mother herself. New arrivals never knew about the reduced-fee or free car parking to which they were entitled and were liable to experience the indeterminacy of waiting, not knowing what had happened, what might happen, and what should happen, as a ticking of the parking meter. As one young man said, in reference to his father, who had visited all the sites within this hospital group, “[M]ost of the waiting is unwarranted; it is the same wherever you go.” It cost him a day of paid work each visit, since he drove his father to and fro. Father and son talked me through various stories about bloods and pharmacy. The son began, “If you have bloods at 9:00 and see the doctor at 9:30, you should get your chemo by 12:30 but it can be 2:30. At the site [my father] usually attends, it doesn’t always matter as they [the nurses] will stay back till 7:00 if there is a problem. They get paid but, you know, it’s not all finance—they have dinners to get and families to see. Here, you stop at 5:00 p.m. and so it will now make a big difference whether he needs one bag [of blood] or two.” If it were the latter, this man’s father would not get his treatment and would have to come back. I asked how they knew what was happening and the father responded, “They just tell you it depends on the queue. That’s the nurse who will say that. They say it depends on how many there are in front of you but they don’t know the answer. If you get through to the pharmacy, they say either we haven’t had the fax or we just got the fax.” As he quickly confirmed, “No one wants to admit they made a mistake or that something went wrong so you just never know when you’ll get the chemo or the blood.”7

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Back at the first site, a couple new to the chemotherapy unit were attempting similar measurements without much success. The previous week, they had come for treatment but were sent away to return the following day for the first infusion. The husband wondered, “I can’t tell if the doctor forgot to order the chemo . . . when we came or if there was a real reason why we didn’t get the treatment that day and had to wait four hours to find out. . . . People always pass the buck, don’t they?” I agree. “And it is always the ones at the bottom that get into trouble,” adds the wife. “If you don’t take the ticket to get in the queue for bloods,” he continues, “no one tells you. I waited forty-five minutes and then asked [before] I found out I had to take a ticket. I wonder if I’d still be waiting otherwise. Still, it is better than other places you wait in the hospital; at least if you have a number, you know where you are and you can pop out to get a glass of water.” We were in a narrow and crowded waiting room next to the unit, and my presence led to general conversations among several people waiting. I heard about the intricacies of this first job of the morning, doing the bloods: “I had to wait an hour this morning [to have my bloods taken] because . . . first of all, there was only one person to take the bloods . . . but, second, if you have a line, you have to wait for a nurse. All these people who came after me with numbered tickets were seen before I was.” A neighbor, wife to a patient who had just left the room, asks, “Why didn’t they do him [her husband] first? It only takes twenty minutes. Now, they say, the chairs are full and it will be three hours before one is free.” She had gone to find out about the wait, and the nurse apparently said, “Look, you can see all the chairs are full.” She says, “Yes I can see they are full, but why didn’t you put him in first?” Later on, the husband returns, dejected. The morning had been a miracle, no wait for the bloods, no wait for the doctor, and, for the first time ever, no wait for the tablets. That day, it was the chemotherapy waiting room that saw them stranded from 9:30 a.m. to 1:00 p.m. They needed to get home, far away, to ready themselves for the priest’s visit that night. In preparation, the wife had risen at 4:30 a.m. to cook. No, the bloods were not right after all, and he was not going to get any treatment and had to go see the doctor. “What a waste of time,” he said to us all in calm resignation as his wife’s emotions silenced her altogether. The first couple were very confused about the day’s program. A nurse had taken bloods and said she would be back in half an hour to let them know if it was OK for chemo today. But the nurse hadn’t returned. As they had waited an hour in the morning, they wondered if that hour would be added on to the 1:30 appointment so that it became 2:30, or would the “system” catch up with itself? Did it mean anything that the nurse hadn’t come back with the results? They were unaware of a built-in wait along this particular pathway when you have your bloods tested and the chemotherapy administered in a single day. At best, you would wait over an hour, probably two, after seeing the doctor. The incomprehensible wait stood in for all the concerns that then bubbled up about medication, eating, pain relief, comorbidities, and about who exactly was looking after them. The couple thought they were under a doctor from their local hospital but were unclear since he had not wanted to talk to them that first fateful day at the center; he said he’d seen them the week before.

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Waits in the form of queues have been described as property claims. Marilyn Strathern asked about legal precepts of property in Sharing, Stealing and Giving Simultaneously (2009), referring to Kevin Gray’s suggestion that queuing does the work of property (Gray [2007] 2010).8 Gray emphasizes the significance of the ordinal sequence; only the order of arrival matters through a rule of first possession that involves the commoditization of time.9 “First come, first served,” however, also creates a sense of persons of potentially equal worth regardless of connections and status. Insofar as the queue holds formally equivalent units in order, Gray sees a property form akin to estates (from the Latin stare, “to stand”) as they are held and distributed each generation (Gray [2007] 2010, 176–78). Several patients asked whether delays would affect the course of a cancer that would not wait. The woman cited above, whose husband could not use public transport, saw their current situation in the context of previous delays. After initial surgery and treatment, she said, “we went afterwards for regular appointments but they stopped suddenly. We thought, ‘Well, he is better; there are no more appointments, maybe everything is OK.’ ” When her husband developed symptoms, they returned to the doctor, who said simply, “Why didn’t you come before?” A year had gone by and the doctor checked his computer, confirming that a letter had been sent. “You know, no letter ever arrived. We might have got it earlier if we had been followed up,” and, she added, they might have avoided another operation and the next course of treatment that apparently cured one side; this year, it was the turn of the other side.10 The nonarrival of a letter seared into the memory had made all subsequent delays a concern and promoted doubts about treatment. This current round had begun after another, shorter delay when the doctor was on holiday. When he returned, he had insisted they attend straightaway, to have an operation at once. Would her husband ever eat again? An elderly woman told me she was only just out of hospital; she had been an inpatient for a week. The story featured a stent of the wrong size and letters that did not arrive, along with appointments that were promised but never made. It was clear to the doctor and patient early in 2012 that the stent should be replaced with a smaller one. But a stent of just as large a size was substituted even though, she said, “I was getting problems. I got problems again, the same infection, and I am a bit cross about that.” Once inserted, it proved difficult to correct the procedure. Eventually, this woman took herself to the hospital doctor, who said he would change it. This was the beginning of June. The doctor said he would do the operation in July or early August. “I heard nothing. . . . I got my [routine] appointment in October. [By this time] the infection was very bad, whizzing around my blood, and I said to the doctor, ‘I never heard from you.’ ” She described the shock of her time as an inpatient: “I did stay in one night that first time as I live alone [that is] when they put back the big stent, not the smaller one.” This time, however, she was taken to theatre at 10:00 p.m. from a ward with elderly and very sick patients. Her neighbors could not get out of bed at all, and she soon acquired a sense of her own mortality, having never

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suffered a day’s illness in her life: “I was feeling sorry for myself and then I looked around, and it brings it home to you if you are not used to sickness. . . . When I saw the doctor again . . . he said, ‘[B]etween you and me, never do that again. If you aren’t sent the appointment after seven to ten days, you have to keep on ringing till you get one.’ ‘But, doctor,’ I said, ‘I’m the patient and you’re the hospital. I’m not going to pester the life out of them.’ I said, ‘I’m old. Maybe younger people will do that, but I haven’t been brought up like that.’ ” He said to her that she would go to the bottom of the pile otherwise. She had waited nearly three months for the correct stent to be fitted, and it was this wait that led to her inpatient stay as she had such extensive infection by the time she was seen. She explained, “I live in a tiny flat [with no shower]. I was fine until I came out of hospital last Thursday; now I cannot get out of the bath.” I met a particular patient almost every time I visited one of the chemotherapy units. He spent many hours in the waiting room, in the treatment room, in the waiting room for the clinic downstairs, and generally hanging around. Early on, he sometimes left without treatment: “There have been times when they can’t find my notes, when [the treatment] has not been authorized in the computer, when there is no pharmacy script; it is all disconnected. I have been sent home without my pump. . . . You know, there must be a big room somewhere with all those notes. . . . I spent two whole days in the waiting room without receiving any treatment. . . . “What happens then if I miss a week’s treatment? Is it detrimental to the cancer?” Discussing various ways of addressing such problems, he concluded, “I have to be very vigilant, that is the only way.” On the sixth or seventh occasion that the treatment did not materialize, I was told, “It’s the same old story. We spent the whole weekend building up to this. We work out the whole week around treatment so that I can pick my son up from school and so my wife can work. She took today off and moved her work towards the end of the week. You know, I am unemployed now, we need her income.” Another time he explained, “[I]f it was me on my own, I could come back tomorrow”; “if it was a one-off, if it had happened just once, I wouldn’t mind. But every single time!” During one of these conversations, his wife articulates the unbearable: “How can they be moving the patients without moving the systems? There is someone in an office doing this to the nurses and, more important, the patients. They should hang their heads in shame. It’s not aspirins they’re handing out; it’s chemotherapy.” Last time we met, the chemotherapy had arrived promptly two weeks in a row. But the bloods had gone missing; “we had to wait and wait. So today, they told me to take the results with me. But the phlebotomist won’t let me. Look, there he goes [the man was himself taking the results from one clinic, where a long line were waiting for their bloods, to the chemotherapy unit to ensure that the patient would not have any more difficulties]. You know, all being well, we’ll be out by 3:00 p.m. today!” It was around 10:00 a.m. at the time, and the couple were going to hurry off to the chemotherapy suite in another part of the hospital to check that the script materialized. Alongside all these problems—the difficulties of transport, waiting for indeterminate periods with little sense of what might happen next, failed communication, lost notes,

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nonexistent appointments, unsigned prescriptions, hospital information technologies that were not integrated across sites and more—every individual to whom we spoke commented on staff in glowing terms. They spoke of excellent care, the best hospitals, long-suffering and harried workers handicapped by a dysfunctional administration, constantly required to work harder and therefore too busy to attend to patients. My most constant interlocutor had said the first time we met, “The main thing that needs to happen is that the system has to be changed. . . . It is all very, very difficult, even though the staff are fantastic.” This was the theme reproduced in subsequent conversations with patients in both chemotherapy units.11 Conversations were structured in similar ways, and they generated an emphasis on the uncommon kindnesses, the admirable skills, and the excellence of care on the part of individual staff within the pervasive structural violence that was the “system” (Graeber 2006, Gupta 2012). This theme—staff versus system—was neither abstract nor clichéd. It came to life as patients described particular incidents: a woman spoke with gratitude of a nurse who, beyond the call of duty (at least in the patient’s view), helped her fill in forms that might allow her to carry on living alone with some social support; another concluded a complex story simply, with the words, “I cannot fault the service they’ve given me.” Such appreciation related to many different aspects of care. For example, I was struck by the comments of a woman on her own who had waited full of anxiety about her first treatment of chemotherapy. Telling me her story, she stopped and emphasized, “Best of all, they realized that my English was poor. They spoke slowly. The doctors speak nicely.” Someone had given her a leaflet in Urdu for reference, and in recollecting this recognition of her situation, this humanity, her face lit up. A couple I met in a diagnostic clinic in Cancer Services told me how worried they had been and how worried everyone was at home. The test results took so long to come back: “But,” they paused, “all is well,” and there was nothing more to say. “She,” said the husband, “was treated like a queen, no, like a small child.” His eyes shone; he smiled. “It would be too much to complain about anything. That wouldn’t be fair; it would be selfish.” The man struggled for the English words: “It made us proud to be in the U.K. It was, even, they did extra things. Like, it was not his duty, the doctor, when there wasn’t a chair for me to sit in, and he went to bring a chair, the doctor. They even did these extra things.” The waits were nothing by comparison to this kindness. Many of the individual acts that patients noted might appear mundane and were in fact routine. But the surrounding chaos, in which staff were caught alongside patients, drew attention to these events and rendered them extraordinary.12 Personal attention from health-care workers, and especially a response attuned to the details of your life and situation, stood out in this environment, whether it was the language you spoke, the anxiety you felt in waiting, or the paper forms that had defeated you. Care in waiting encompassed relations among patients, too, often fleeting and worrying, but constitutive of the business of noticing. Some patients may talk too much or

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need too much. Others offer dystopian mirrors of your own future. Some intervene on your behalf. If the wait constitutes a claim or a property right, these observations suggest that the property is common to those who meet and occupy hospital spaces. But this common claim seems to be differentiated; for example, companions objected to waiting more than, and often in contrast to, patients, who just waited expecting that their presence would elicit a response at some point. Gray presents the property claims of a queue as a self-help community in which those waiting extended collaborative and mutual support in the honoring of debts and response to needs: rights, he argues, are inseparable from responsibilities ([2007] 2010, 193). But Candace Vogler’s (1998) discussion of depersonalized intimacy may capture more nearly the ways in which patients lost and found themselves in intimate encounters with variably anonymous others, sometimes totally involved without actively participating. Waiting, if the manifestation of bureaucratic indifference, also produces a routine of care that adds responsiveness and common humanity to expert practice and professional conduct. In the United Kingdom, bed space has become more and more tightly controlled in the drive for efficiency at a time when the legitimacy of the sick role has been restricted more generally. It is more difficult than previously to be signed off work or to claim welfare support for ill health. The time off or time out in recognized sickness used to mean a period of waiting and resting that was described equally as a form of healing and care. Now, waiting cannot be included within NHS accounting except as a practice to be reformed or a target to be reached: delays signal inefficiency, while resting belongs within private, domestic accounts. Care in turn has become exclusively active in the process of treating and intervening, at least in cancer services. Bed rest is no longer an aspect of formal care, and patients are housed for increasingly short periods of time. In consequence, the informal care embedded in waiting together has been reduced significantly, too.13

WA I T I N G I N P U B L I C

Mapping the complex pathways for cancer care before our service evaluation, I was invited to sit with oncologists in their clinics. I was puzzled by the comments one woman made about how she had returned to the NHS after experiencing private health care, which is growing in London and includes various services that were not previously covered by insurance. This woman was attending the clinic four years after her diagnosis, and the doctor wanted to discharge her. They reached a compromise with one further visit planned in a year’s time. She turned to me to explain: “I always come here. I don’t go privately, I don’t trust them. I tell all my friends to come here. My one friend died; she went privately. . . . [Here, in the NHS hospital] it is like a conveyor belt. No one talks to you for six months. You have this medicine and that surgery, this treatment and then that. It is hard to remember it all, and you are just on a conveyor belt. Then, after six

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months, it is all explained. It is safe. I would never go anywhere else. I come here for my [continuing] treatment. I know everyone now.” This conveyor belt of treatment was associated with a positively evaluated lack of communication, an inhuman but also safe form of therapy. She continued: “They do it all for you; you don’t need to think. You are like a robot as you go through the system. And even though no one examines you for months, this is this, this is that—it’s all in the right order, it is all good.” She attributed a sense of safety to the number of staff involved who knew what they were doing. One was equivalent to another; they were somehow stacked up, always ready for substitution. If you didn’t see the doctor you met last time, a replacement appeared. He or she might be a junior rather than a specialist, but they were answerable to each other, and a junior could always find a senior to advise. At the time of our conversation, she was meeting the doctor for only the second time in these four years and had to hope that the infamous system of notes and computer screens would ensure some temporal continuity from her last visit. I never discovered what had happened to her in private care. This conveyor belt, known as the care pathway, was neither pleasant nor easy. In addition to the scarcely tolerable treatment, patients fought to register their own individual and unique attributes. At its simplest, you had to think what to do when someone left the waiting room ahead of you even though they had arrived later. But you also had to be generally attentive to ensure that you were not mistaken for someone else. You had to work hard at your own reassembly when, for example, medical notes recording your own particular history went missing or when two tests gave apparently inconsistent results. You had to persist when the doctor insisted that your symptoms were due to a cold since the treatment did not, in theory, cause such effects. The vignettes presented suggest that patients railed against a bureaucratic logic of equivalence and substitution applied to their own conditions and epitomized in the wait. They fought against impersonal norms of the average, typical, or normal applied to the patient body. Nonetheless, they considered this very same logic to make for safety, for a positively evaluated conveyer belt, when applied to staffing. Like patients, clinical staff both resisted and welcomed the factorylike features of the NHS. Although it is beyond the scope of this chapter to address staff perspectives in any detail, it is important to recognize the symmetry associated with my suggestion of common property rights. Like the patient cited above, frontline staff also contrasted public and private practice; this contrast is a core feature of NHS hospital spaces as well as a means of discriminating between sites. Senior clinical staff in London often combine private practice with an NHS post. Note the voices raised against bureaucratic indifference in a recent consultation as staff complained about redundancies, the loss of secretarial support, and staff shortages. Incomprehension greeted the apparently rational solutions to cuts such as the savings introduced by sending all letters dictated in clinics to India for transcription—an innovation associated with patient complaints about delayed

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communication and incomprehensible English. In this context, wistful comments evoked the succor that a clublike atmosphere provides to senior doctors when they “retire” to their “rooms” for a few hours to recover from the grind of the NHS. Staff, too, resisted the constant play of substitution and equivalence, even though the division of labor made these an intrinsic aspect of their own collaborative work. In private practice, value was correctly recognized in their view to flow from the skills of particular expert clinicians, both in the form of the money that makes it possible to employ other staff and in the response of patients who “show you more respect” and “value what you have to give.” Doctors, nurses, and other staff enjoy the continuity of attention that they can provide in private practice via telephone, text, email, and letter as well as visits on demand because of well-paid secretarial support. Neither of these gold standards—of clinical expertise and continuity of care—is easily realized within the NHS, although they inform many frontline innovations. At the same time, however, clinical staff enjoyed the protective security of thick NHS walls, as did patients. When patients complain about mistakes or omissions unacknowledged, staff can enjoy the impersonal rather than personal accountability of a bureau. They did not have to present themselves in person to justify an outcome or rewrite an apparent problem; they could blame the system instead or substitute another. NHS hospital spaces can protect both staff and patients, albeit in different ways. From these few comments, it might seem that the impersonal, procedural, hierarchical, and technical organization of the NHS would pit frontline staff against patients. The features that allow clinicians and others to hide from personal accountability cause patients significant problems, while the safety that patients associate with notions of equivalence among staff lined up in the clinic alienate clinicians from their environment. However significant the dividing line, both staff and patients are also able to give their grievances to a “system,” thus forming an inclusive commons accommodating carers and the cared for—all those who occupy the spaces.14 Waiting, then, is a dense affair in the NHS, winding together various idioms of public and private, of “us and them” or “us and the system,” notions of archaic forms in state and industry alike, as opposed to more flexible and responsive, often therefore virtual and temporary, real-time productions of the spaces of care through an apparently more active participation. The factory imagery suggests a solidity that can be reassuring as well as chilling. The sheer hard work of waiting that constrains health workers and patients alike provides a commentary on the two themes so prominent during 2012 associated with Danny Boyle’s Olympic extravaganza of domestic belonging on the part of citizens and the notion of theft and humiliation from subjects by officials. What sorts of property rights exist in the hyphen between nation and state, expert and supplicant?

THE HYPHEN: CITIZEN-SUBJECT

Marx, in his 1875 Critique of the Gotha Programme, asks what is fair. What might an equal right or equivalent be other than a measure of commodity exchange? “The exchange of

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equivalents in commodity exchange exists only on the average and not in the individual case,” he writes. It is the measurement of abstract labor that produces equivalence: “The right of the producers is proportional to the labor they supply; the equality consists in the fact that measurement is made with an equal standard, labor.” This notion of average measure and equivalence is contrasted with equality: But one man is superior to another physically, or mentally, and supplies more labor in the same time, or can labor for a longer time; and labor, to serve as a measure, must be defined by its duration or intensity, otherwise it ceases to be a standard of measurement. This equal right is an unequal right for unequal labor. It recognizes no class differences, because everyone is only a worker like everyone else; but it tacitly recognizes unequal individual endowment, and thus productive capacity, as a natural privilege. It is, therefore, a right of inequality, in its content, like every right. Right, by its very nature, can consist only in the application of an equal standard; but unequal individuals (and they would not be different individuals if they were not unequal) are measurable only by an equal standard insofar as they are brought under an equal point of view, are taken from one definite side only—for instance, in the present case, are regarded only as workers and nothing more is seen in them, everything else being ignored. Further, one worker is married, another is not; one has more children than another, and so on and so forth. Thus, with an equal performance of labor, and hence an equal in the social consumption fund, one will in fact receive more than another, one will be richer than another, and so on. To avoid all these defects, right, instead of being equal, would have to be unequal. (Marx [1890–91] 1999)

This distinction between equality and equivalence points to the impossible situations our interlocutors described and lived as substitutable individuals, so uncomfortably experienced through bureaucratic encounters of all kinds, alongside the care taken and shown among those unique persons present to each other. Waits assemble forms of equivalence comparable to those expressed in the language of rights and duties among citizens. They also allow for and positively generate practices of equality—that is, a response to what is needed or wanted. This contrast is captured by distinctions in public health between equal rights to care and the care appropriate to different needs or possibilities: everyone has the right of access to a primary-care physician, for example, but this doctor will respond differently to the needs presented. In this context, Marx’s commentary evokes Aristotle’s distinction between the equal treatment of equals and the unequal treatment of unequals.15 Waiting constitutes one prospective view of triage, which exceeds the linear order of a queue (ordinality) in processes that rearrange and sift the assembly (triage, trier: “to separate, sift, select”).16 If no one much enjoys that strange legal subjectivity of being substituted for or considered equivalent to another, the wait nonetheless elicits a response and attentiveness that amounts to a process of focusing or differentiating—that is, a triage of the potential or transitional space of the generic.17 Triage involves active calibration and commensuration across the hyphen between equality in the sense of sameness,

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where units are equivalent and can be substituted, and equity in the sense of difference, where units cannot be substituted for each other, eliciting instead different responses. A triage reorders, frames, or interrupts temporarily this mixture, “the hyphen,” in the wait. Preliminary research in a London hospital group and especially two of their chemotherapy units, where waiting has been elaborated into an art form, suggests that a prospective view reveals a combination of rationing, ordering, pricing, and holding that generates a politics of care that will retrospectively become part of the triage that has been improvised and accomplished.18 This care is not known ahead of time, and it mediates two very different calculations: the formal and the substantive. A patient told my colleague, Helen Ward, about the nurses who had no time, emphasizing that “nursing is all about care, taking time and doing it well.” He pointed to his neat IV cannula in illustration, suggesting that in waiting he had elicited attention from others to whom he was attuned. Waiting is an intense form of occupying the NHS and being held in place, which can approximate to a process of articulation between those who wait together and the worlds in which they wait (Despret 2004). As long as this world of an overbureaucratized NHS epitomized in waiting and queuing appears as a world that, to borrow Vinciane Despret’s argument, “we don’t care for,” it becomes an impoverished world.

CONCLUSION

Waiting only recently became associated so closely with queuing. The waiting room dates from the 1680s and the waiting game from 1890. The waiting list is recorded from 1897, although its connotations of a delay endured, and an expectation unfulfilled existed earlier (Shorter Oxford English Dictionary 1980, s.vv. “wait,” “waiting”). In Middle English, though, via German roots, waiting was an active process of watching, guarding, and being awake, of looking on, visiting as well as spying, in uses such as the ambush or trap associated with lying “in wait.” Moreover, we can wait on (attend, assist, attend to, and serve) those who present themselves without any of the contemporary connotations of subservience, especially in highly valued public and religious service. I have presented waiting as a material occupation, a stranger sociability (Berlant 2008; Vogler 1998; Warner 2002), and recognition of the care claimed and given that defines a public to which you belong. I have shown, too, the tensions within such a public, since participants consider that the NHS belongs to them while, at the same time, they are defined, contained, and put on hold by “the system.” If this material is convincing, then the end of waiting, universally seen as a positive outcome, might have unanticipated effects on the care that the NHS can deliver. Those who wait and those who wait on (or attend) sometimes become attuned and learn to be affected—that is, to care (Despret 2004, 131). A politics of care animates social contracts among strangers, and U.K. residents associate this vitality with “their” NHS specifically, whose values and practices produce the hyphen between nation and state, citizen and subject, equality and equity.

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N OT E S

1. The details are widely available; see, for example, the site set up by the British Medical Journal at http://journals.bmj.com/site/nhsreforms/index.xhtml. They also change rapidly: the fieldwork reported here and the writing of this piece took place in 2012. 2. For examples of this coverage, see Tim Stanley of the Telegraph (July 28, 2012), Polly Toynbee of the Guardian (July 30, 2012), and blogs and commentaries such as those at www.politics .co.uk/comment-analysis/2012/07/30/comment-the-politics-of-the-opening-ceremony and www .opendemocracy.net/ourkingdom/sunder-katwala/island-story-boyles-olympic-opening-wasirresistibly-british (accessed December 7, 2012). 3. Begoña Aretxaga suggested that “one should consider a variety of relations that are ambivalent, ambiguous, hostile, violent, porous . . . in which the nature of the hyphen [between state and nation] is more a cipher than a self-evident reality” (2003, 398). 4. This research was funded through the National Institute for Health Research Imperial BioMedical Research Centre with approval from the NHS Health Research Authority (NRES committee London—City & East). I should like to acknowledge in particular Helen Ward’s contributions to my account of our work. We are grateful to colleagues in the NHS Trust and University for supporting the research, and especially to patients affected by cancer who have enabled us to understand the dense fabric of waiting in the NHS. Participants at a Sussex University anthropology seminar (2012) and through joint research on numeracy (with Celia Lury and Nina Wakeford, 2011–14) have contributed to the development of my argument, and I would also like to thank Victoria Goddard and Jonathan Weber for comments on an earlier draft of this chapter. The following pages do not address my earlier research directly, since the peculiar stigma attached to sex work in the United Kingdom makes NHS waiting for them highly particular. Nor do I discriminate between the different forms of waiting in a queue, in a room, at a distance, and so forth, although I hope to do so elsewhere. 5. Ten essential principles are listed by David Osborne and Ted Gaebler (1992, 19–20, in Paul du Gay 2000). 6. I am referring literally to markets in life and death, although I borrow the term from Elizabeth Povinelli (2006). 7. Vignettes are not reported verbatim but are taken from my notes of informal conversations and interviews. 8. Gray’s 2007 paper was published in 2010. 9. Given this commoditization, it is widely noted that many poor people earn a salary by waiting and queuing on behalf of the wealthy. 10. Many of these people used the first person plural for treatment that one of them was receiving. 11. I heard just two negative comments from others who were waiting along the cancer pathways. 12. Deborah James and Evan Killick, writing of immigration case workers in London faced with developments comparable to those within the NHS, emphasize the collaboration between case workers and their clients in order to show that “episodes of compassion” are more than “privileged moments” in the administration of repression (Fassin 2005, 375, in James and Killick 2012, 437).

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13. The extent of the reforms to waiting over recent years came home to me when I watched Melissa Llewelyn-Davies’s outstanding 1986 documentary from a busy London hospital again recently. It is hard to distinguish waiting from holding, and care from treatment, as we watch nurses tending to the elderly on a general medical ward. Waiting is of course an important disposition to cultivate outside the hospital still, as suggested by the many fine cancer biographies and autobiographies by anthropologists such as Paul Stoller (2005) from the United States. Like so many of the patients we met, Stoller found that he had to pace himself; that’s all there was to it. Remission meant waiting: spending years “being on hold,” “waiting for the other shoe to drop,” or “sitting on your hands” (Stoller 2005, 182; see also Frank 1995 on remission society). 14. I cannot extend the argument here to the back room, but I have talked to senior managers who are also clinicians. They expressed unease at this ready separation of a front line from management. I should also clarify the rhetorical sense of “public” in these NHS spaces, since the care that is free at the point of delivery is combined with all sorts of private enterprise as well as academic, public-health, and voluntary efforts. I wondered, for example, whether anyone else contemplated the elevator as I did in one hospital site. It traveled from the ground some twenty floors without stopping. Had it been earmarked for the private patients who were seen on that floor, and did no one object? 15. See for example, the public-health textbook for NHS staff, which follows the Faculty of Public Health syllabus in the United Kingdom: “Aristotle’s formal theory of distributive justice makes the distinction between vertical and horizontal equity: horizontal equity refers to equity between people with the same health care needs, whilst vertical equity refers to those with unequal needs [who] should receive different or unequal health care” (www.healthknowledge .org.uk/public-health-textbook/research-methods/1c-health-care-evaluation-health-careassessment/equity-health-care; accessed January 9, 2013). 16. Triage has been discussed extensively in anthropology, especially with reference to state practices, including state medicine, of letting die (and live). My comments are intended to refer more narrowly to the expectation in waiting. Elsewhere, Livingston (2012) also considers expectations of care as a political promise in Botswana, which has a universal health-care system, as does the United Kingdom. She presents an ethics of distribution that is intrinsic to citizenship in her inspiring account of oncology. She shows, too, how oncology nursing— “with its touching, feeding, bathing, listening, noticing—concretizes the humanistic promise of medicine. When shirked or performed as just another bureaucratic function, it concretizes the immorality, the coldness of modern institutions” (Livingston 2012, 97). 17. Winnicott’s “space between,” “potential,” or “transitional space” is the place where narrative can be inscribed or held but is not the narrative itself. In this area, fantasy and reality overlap, and creativity and play originate (Winnicott 1971). 18. Compare with Jane Guyer’s account of the allocation of scarce fuel in Nigeria. Guyer notes the many linked registers of a repertoire for distribution where oil is considered to belong to the people collectively. She describes a particular event at length in order to show that it “was not rationing devised from a blueprint from above, and neither was it the free operation of supply and demand on the nominal price.” It involved the skill of improvisation in a volatile situation and the performance of flexibility and resilience that was routine in general but always extraordinary in each instance (Guyer 2004, 113–14).

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REFERENCES

Aretxaga, Begoña. 2003. Maddening States. Annual Review of Anthropology 32:393–410. Berlant, Lauren. 2008. The Female Complaint: The Unfinished Business of Sentimentality in American Culture. Durham, NC: Duke University Press. Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Day, Sophie. 2007. On the Game: Women and Sex Work. London: Pluto Press. Despret, Vinciane. 2004. The Body We Care For: Figures of Anthropo-zoo-genesis. Body & Society 10 (2/3): 111–34. du Gay, Paul. 2000. In Praise of Bureaucracy: Weber, Organization, Ethics. London: Sage. Fassin, Didier. 2005. Compassion and Repression: The Moral Economy of Immigration Policies in France. Cultural Anthropology 20 (3): 362–87. Frank, Arthur W. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Gibson, Janine. 1999. Tory Advert Rated Poster of the Century. Guardian, October 16. www .guardian.co.uk/media/1999/oct/16/advertising.mondaymediasection. Accessed December 7, 2012. Graeber, David. 2006. Beyond Power/Knowledge: An Exploration of the Relation of Power, Ignorance and Stupidity. Malinowksi Lecture, LSE. Unpublished. http://libcom.org /files/20060525-Graeber.pdf. Accessed January 9, 2013. Gray, Kevin. (2007) 2010. Property in a Queue. In Property and Community, edited by Gregory S. Alexander and Eduardo M. Peñalver, 165–95. Oxford: Oxford University Press. Gupta, Akhil. 2012. Red Tape: Bureaucracy, Structural Violence, and Poverty in India. Durham, NC: Duke University Press. Guyer, Jane. 2004. Marginal Gains: Monetary Transactions in Atlantic Africa. Chicago: University of Chicago Press. Herzfeld, Michael. 1992. The Social Production of Indifference: Exploring the Symbolic Roots of Western Bureaucracy. Chicago: University of Chicago Press. Hoag, Colin. 2011. Assembling Partial Perspectives: Thoughts on the Anthropology of Bureaucracy. PoLAR: Political and Legal Anthropology Review 34 (1): 81–94. James, Deborah, and Evan Killick. 2012. Empathy and Expertise: Case Workers and Immigration/Asylum Applicants in London. Law & Social Inquiry 37 (2): 430–55. Livingston, Julie. 2012. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham, NC: Duke University Press. Llewelyn-Davies, Melissa, director. 1986. Nurses: The Team on B6. 47 min. BBC Television. Marx, Karl. (1890–91) 1999. Critique of the Gotha Programme. In Marx/Engels Selected Works, vol. 3, 13–30. Moscow: Progress Publishers. Online version (transcribed by Zodiac and Brian Baggins; HTML markup by Brian Baggins) available at www.marxists.org /archive/marx/works/1875/gotha/. Osborne, David, and Ted Gaebler. 1992. Re-inventing Government: How the Entrepreneurial Spirit Is Transforming the Public Sector. Reading, MA: Addison-Wesley. Povinelli, Elizabeth. 2006. The Empire of Love: Toward a Theory of Intimacy, Genealogy, and Carnality. Durham, NC: Duke University Press.

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Shorter Oxford English Dictionary. 1980. 3rd ed. Oxford: Oxford University Press. Stanley, Tim. 2012. Danny Boyle’s Olympic Opening Ceremony Was As Ironic, Complex and Beautiful As Britain Herself. Telegraph, July 28. http://blogs.telegraph.co.uk/news /timstanley/100173004/danny-boyles-olympic-opening-ceremony-was-as-ironic-complexand-beautiful-as-britain-herself/. Accessed December 7, 2012. Stoller, Paul. 2005. Stranger in the Village of the Sick: A Memoir of Cancer, Sorcery and Healing. Boston: Beacon Press. Strathern, Marilyn. 2009. Sharing, Stealing and Borrowing Simultaneously. In Ownership and Appropriation, ASA Monograph 47, edited by Veronica Strang and Mark Busse, 23–42. Oxford: Berg. Toynbee, Polly. 2012. London 2012: Danny Boyle’s Opening Ceremony History Is Only a Partial Truth. Guardian, July 30. www.guardian.co.uk/commentisfree/2012/jul/30/dannyboyle-olympics-ceremony-partial-history. Accessed December 7, 2012. UK Uncut. 2012. Austerity Isn’t Working. www.ukuncut.org.uk/blog/austerity-isnt-working. Accessed December 7, 2012. Vogler, Candace. 1998. Sex and Talk. Critical Inquiry 24 (2): 328–65. Warner, Michael. 2002. Publics and Counterpublics. New York: Zone Books/MIT Press. Winnicott, Donald W. 1971. Playing and Reality. London: Tavistock.

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9 THE SOCIAL PHENOMENOLOGY OF THE NEXT EPIDEMIC Pain and the Politics of Relief in Botswana’s Cancer Ward

Julie Livingston

This chapter looks closely at some of the more fine-grained processes of clinical care to suggest how cancer, as an emergent issue in African public health, forces long-standing questions of palliation to the foreground and highlights the intensely social nature of pain. I will explore the conditions that facilitate the marginalization of pain and palliation in African clinical practice and in global health more widely, and I will examine the contemporary clinical dynamics that engender this marginalization in the specific context of oncology, where many patients suffer severe and intractable pain as a result either of their illness or of the effects of biomedical therapies. In other words, this essay is an exploration of how and why biomedicine proceeds in Africa with so little palliation and so much compliance. The context for this ethnography is Botswana’s lone cancer ward, where I have been researching conditions of care since 2006. The ward opened in late 2001 in Princess Marina Hospital (PMH), Botswana’s central referral hospital, in anticipation of the cancer that would follow the scaling up of the national antiretroviral (ARV) program. At the time Botswana had the highest reported prevalence of HIV in the world, and was initiating what would become the first public ARV program in Africa. Pain is a capacious category of experience, and in what follows I will remain tightly focused around cancer-associated pain. I will not make claims about any other forms of pain, which may have different moral valences, engender different phenomenological experiences, and carry different social effects. In any event, cancer pain is quite a worthy site of investigation in contemporary Botswana. A cancer epidemic is emerging rapidly in the country, and this appears to be a trend across the continent.1 Botswana now boasts

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higher reported incidence rates of certain cancers (e.g., cancers of the esophagus, cancers of the cervix, and Kaposi’s sarcoma) than the United States, and in 2003 Lancet Oncology reported a projected rise in cancer rates across Africa of 400 percent over the next five decades.2 A more recent study reports that “even leaving aside the huge load of AIDSrelated Kaposi’s sarcoma (KS), a woman living in present-day Uganda (Kampala) or Zimbabwe (Harare) has a chance of developing a cancer by the age of sixty-five that is only about 30 percent lower than that of a woman in Western Europe, and her probability of dying from a cancer by this age is almost twice as high” (Parkin et al. 2008, 683). Thanks to the widespread public provision of antiretroviral drugs, many patients in Botswana are now surviving their HIV disease only to find themselves grappling with viral-associated cancers facilitated by their history of immunosuppression.3 This unfortunate by-product of the otherwise marked success of Africa’s first national antiretroviral program couples with the significant burden of other cancers already prevalent in the population to create a situation of overwhelming proportions. The biological and clinical challenges of oncology in the face of HIV are tremendous, as are the technical challenges of providing meaningful cancer care in an essentially ad hoc clinical setting, and the public health challenges that an emerging epidemic of cancer poses for a health system with extremely limited screening capacities.4 Profound pain highlights one critical aspect of these difficulties. Many of Botswana’s cancer patients have aggressive and advanced disease. Such cancers are often relentlessly painful, and clinicians may respond to them with therapies that are deeply aversive.5 At the same time, because such patients are understood to be very sick, and because many of them become known to clinical staff through cyclical visits and hospitalizations, the ethic of palliation that holds in the cancer ward is unique in the hospital and in the broader health system. A focus on pain in such a ward suggests how ethnography at the coal-face of clinical care helps to sharpen and contextualize the complexities of drug policy while also reminding us that biomedicine is a localized practice as much as it is a global system of thought and technology (Long et al. 2008; Van der Geest and Finkler 2004; Finkler et al. 2008). While the chemical tools of palliation are standard, the circulation of drugs and the politics and logics of palliation vary tremendously across clinical contexts. For example, in the modern United States the issue of doubt is at the center of the long and thorny history of pain politics and often hinges on fears of malingering and/or opiate addiction (Rouse 2009; Good et al. 1992; Jackson 2000).6 Botswana’s oncology ward points us in other directions, suggesting the need for a very different sort of pain politics than one that focuses on gatekeeping individual access to an assumed supply of palliative technologies, or on developing new analgesics. As Human Rights Watch has documented, though cancer rates are rising, widespread shortages, and in many cases the outright absence of strong pain relief, are the norm across Botswana and much of the global South, and it is on this issue that African pain politics should focus (Human Rights Watch 2009). This focus on doubt that drives American pain politics is also at the center of Elaine Scarry’s now-famous proposition that pain is an individually held experience, one that

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“shatters language” (Scarry 1985). Scarry found that pain simultaneously produces certainty in the person in pain and doubt in the onlooker, a dynamic of witnessing (and even inflicting) from which a series of ethical problems around what to do about pain cascades. She goes on to examine these ethical problems of doing, in part through an examination of a wide variety of texts, including writings on torture and war, scripture, memoirs, and Marx—all the while rendering pain as an object located in an individually bounded body. Yet this conceptualization is ill suited to capture the logics of pain and the processes of palliation on Botswana’s oncology ward, and I suspect in many other places as well. In conversations with Tswana healers I found that it was nearly impossible to talk about pain as pain—to imbue it with ontological import, to construct it as an object. Pain, it seemed, could not be separated out. Invariably, it collapsed back into its underlying pathology, which in Tswana medicine is necessarily a social pathology.7 This total situatedness of pain, its refusal to be separated from the flow of pathological social experience, is meaningful, and helps us move from the problem that doubt presents to the social effects of certainty.8 The oncology ward is an intensely social space, one where doubt is simply not at the center of the problem around “doing” that pain presents. As we will see in what follows, everyone knows with certainty that drilling into a patient’s bone marrow or sawing off a patient’s leg produces pain, and yet this pain, which is caused in order to heal, is often seemingly ignored as it is being inflicted. In taking a social approach to pain I am in sympathy with anthropologist Talal Asad’s ideas about the body, agency, and pain, which contrast with Scarry’s proposition. In moving from text to experience, from the specificity of torture to broader categories of social interaction, Asad does not see pain as an object to be overcome by an agentive individual. Instead, he argues that pain is a relationship. Asad acknowledges that the somatic experiences of injured persons cannot be fully accessed by observers, but he reminds us that this is not all there is to pain. He writes: “Sufferers are also social persons (animals) and their suffering is partly constituted by the way they inhabit, or are constrained to inhabit, their relationship with others” (Asad 2003, 85; see also Das 1997). In other words, pain begs a response. In order to take a close-up view of these social dynamics of pain and palliation, I am going to offer an unfortunately somewhat grisly excerpt from my ethnographic field notes.

A F T E R T H E A M P U TAT I O N F I E L D N OT E S

January 25, 2007 A Kaposi’s sarcoma patient, M. This man is in his 30s—he was amputated above the knee on the 15th. We are on ward rounds visiting cancer patients in men’s surgical and he requests to see Dr. P. Dr. P asks for him to be brought to the oncology clinic after rounds. I remember the meeting before the amputation, and how M (accompanied by his sister) willingly agreed to rid himself of the swollen, rotting, and now useless leg. Later in the

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morning M arrives in oncology from the men’s surgical ward in a wheelchair with an orderly. He is in CRAZY pain. His eyes are bulging and rolling and he is pouring sweat. He is in agony. (I looked later at his medical card—he was originally given pethidine [known as meperidine in the United States] 100 mg then tapering to 50 mg, and then codeine for a few days, and now for about a week he has been given ibuprofen only.)9 He is anxious and he tells Dr. P: They want to push me out—to send me home! But I can’t manage. There is a problem with the leg. You can even smell it. Dr. P tries to touch up high on the stump and M cringes in agony. Silent—but in agony nonetheless. I am on the edge of my seat, cringing, and wondering if I should say something about the obvious pain. Dr. P seems cognizant of the pain, but not particularly interested in it. Intense. At one point he absently places his hand on M’s thigh as a sign of compassion, and M recoils with force. Dr. P has him unwind the bandage and show the wound—M is squirming in pain as he does it and as he gets down to the last layer of gauze he is really crying out short breathy sounds. Eesh! Tjo!! With force. It is unbearable and it is just coming out of his mouth involuntarily. Then as he gets to the point of exposing the wound it is too much and he can’t go on. I fear he will pass out. I can see that Dr. P is a bit impatient, and I know why. There is a tremendous queue of patients waiting for him (the only oncologist), many of them are very ill, and this is taking a long time. Besides, it is a surgical problem not the KS that is causing this. So Dr. P calls for a nurse and Mma L comes. Dr. P asks her to take M to the treatment room across the hall and take off the bandage with water, because it is stuck to the wound. And please give 75 mg pethidine first. As you can see it is very painful. Mma L glances over at M and protests that she is covering the ward and she can’t also be here. Dr. P asks where is Mma M who should be here? Mma M has gone on tea break. A little debate and then Mma L agrees to do it. But she wants Dr. P to put the pethidine order in the hospital card. He says he will do it later. No, you must do it first. All the while I am squirming, feeling like I am the only one with a sense of urgency about the pain here. I also feel like M must be SO freaked out to see his leg like this. He is only 10 days after the surgery. Who knows how he is currently making sense of the trauma of profound disfigurement. We leave and go to the private ward to see another patient. When we return Dr. P is about to eat a peach for his impromptu tea when Mma T says No, don’t eat that. You need to go and look at the leg in the treatment room first. What? It will make me vomit—I won’t want to eat afterwards. So we have some joking. Dr. P quickly finishes his peach and washes his hands. We enter the treatment room and M’s stump is covered with a piece of gauze just resting on it. M is still sweating and his eyes are still bulging, but he is calmer after the pethidine. Dr. P lifts the gauze and exposes the wound. It has completely burst the sutures—the jagged end of the bone is jutting out like a roast beef and it is all totally infected, swollen, white rotting meat. They failed to disarticulate the bone during the surgery.10 He can’t possibly be discharged. Nor should he be transferred to oncology—he needs to be reamputated immediately– and as Dr. A later says, the remainder of the femur removed and the wound closed. I am appalled! Dr. P less so. Dr. A comes in and is a bit dazed by it—asking if we’ve seen it (did he say “it”? Or did he say “the guy with the KS amputation”? Or did he say “M”?) and then commenting on how dangerous this is. I remember this

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patient—I remember M—he had accepted the need for amputation and was almost cheerful about it—now this. If I were his relative I would be through the roof. Go ferosa sebete.

P A I N M A N A G E M E N T I N B O T S WA N A

My purpose in presenting this very visceral incident is not to exploit poor M for theatrical purposes, and I confess that I feel a bit uncomfortable about exposing the intimacies of his vulnerability. Yet, given how abstract (and in doubt; cf. Scarry 1985) the pain of others can be, I fear that ethnography of this sort is necessary here in order that you might begin to imagine what it would be like to be in extreme and serious bodily distress, groping for some sort of communicative possibility that will bring relief to you, and this in an institutional setting where the mechanisms of relief are closely controlled, and where the nearest thing to a relative or friend you have—someone actually invested in you—is (you hope) this German oncologist. And at the same time I am also asking you to imagine being a nurse or a doctor in a chronically overwhelmed hospital, a decade into an AIDS epidemic in which you have seen untold suffering and death. What are we to make of this decidedly African scene, with its German oncologist (Dr. P) in a profoundly overcrowded urban hospital named for a European princess? Setting aside the clinical issue of how M’s amputation went so wrong, we are left with his pain. Where were the pain charts of smiling and frowning faces, and the 1-to-5 pain scales we see in contemporary American and European hospitals?11 How is it possible that someone in such obvious distress was not given pain medicine sooner? Why was it that M drew attention to the smell of his leg but did not complain of his substantial pain? Why did I (and perhaps you) feel such discomfort at M’s obvious pain while the clinical staff seemed significantly less affected, even though Dr. P and the oncology nurses were caring people and passionate about their work? How and why did M manage to stay so relatively calm and quiet in the face of such agony? Why is it that almost every patient leaves the hospital or clinic with a packet of paracetamol or ibuprofen—whether they need it or not—yet many clinical staff are reluctant to use opioids even for patients who are dying, despite long-standing WHO protocols encouraging their use? How could we be joking and laughing about this human leg of rotting meat while enjoying a peach? It is ironic that biomedicine proceeds in Africa with so little palliation, given that pain is what propels many patients into clinics and (often iatrogenic) hospital spaces. Health planners go to great lengths to encourage patients to go to biomedical sites rather than “traditional” healers, yet they seem generally (there are exceptions) to ignore the role of pain, this fundamental bodily experience, as a motivation for seeking help. The sheer force of pain has many swimming upstream in an overwrought health system. True, there is now an African palliative-care movement. The Botswana Ministry of Health has been developing palliative-care guidelines, as have other governments that are following WHO recommendations. But so much has been pushed under the palliative-care rubric—from the writing of wills to the provision of soap and basic nutrition—that the

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imperative of pain has been greatly diluted (McNeil 2007; Logie and Leng 2007; World Health Organization 2003). In such a configuration, attention to bodily pain may be compromised by the vast array of other problems in need of attention. But the fact of pain, the desire for relief, and the phenomenology and materiality of palliation are not to be underestimated, even though much of it seems to happen around the edges and in the interstitial spaces of African health care. In Botswana there is a particular economy of expression, and an ethic of palliation, such that pain may be spoken of, but is rarely screamed or cried over. This has critical consequences in contemporary clinical practice that are compounded by a nursing culture that has historically shied away from the use of strong painkillers (Mosweunyane 1994; Moyo 1994). But we should not romanticize patient silence. A national survey of terminally ill patients and their caregivers conducted in four districts of the country found that 64 percent of respondents listed “severe pain” as a crucial problem of the terminally ill, making it the most commonly reported issue (World Health Organization 2003, 25). Nor is the problem limited to Botswana. Another study that contrasted the experience of dying of cancer in Scotland and western Kenya found that “the emotional pain of facing death was the primary concern of Scottish patients and their carers, while physical pain and financial worries dominated the lives of Kenyan patients and their carers” (Murray et al. 2003). There are many factors that contribute to the marginalization of concerns about pain in contemporary African clinical medicine. African medicine, even in a comparatively wealthy country like Botswana, as an outgrowth of British colonial medicine and as a particular node in a broader international health logic, has historically operated as a grossly underfunded zero-sum enterprise. Its history of vertical health campaigns and strong focus on primary care, and its politics of emergency, don’t favor robust attention to issues of pain and symptom control. In such a system meaningful pain relief is also invisible when it comes to the evaluation of care (which is structured to record statistically known mortality, fertility, and disease-transmission outcomes). Thus pain management can appear to be something of a frill rather than an imperative in policy formulations, a status that manifests itself in the daily logics of clinical practice. Though pharmaceutical interventions are only one aspect of pain relief, they are nonetheless suggestive of the wider problem. In 2004 the International Narcotics Control Board reported, “Developing countries, which represent about 80 per cent of the world’s population, accounted for only about 6 per cent of global consumption of morphine” (International Narcotics Control Board 2005, 25). Why and how is it that Botswana, with its relatively strong economy, progressive public health infrastructure and politics, public–private health partnerships, and profound AIDS and cancer epidemics (with all the attendant pain that implies), in 2004 had a per capita morphine consumption of .52 mg, while in its former colonizer, the United Kingdom, per capita morphine consumption was more than thirty-fives times greater at 19.15 mg per person?12 The challenges are complex. Maintaining adequate stocks of drugs (any drugs) in African health systems has long been problematic. Even when adequate national stocks

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of morphine are available, they are difficult for many nonhospitalized patients to access, due to barriers of travel, the need for a professional referral from a clinic to a hospital, and so forth (Koshy et al. 1998). There is reluctance to allow nurses to prescribe opiates, and they are the ones who by and large staff rural health centers. This is certainly the case in Botswana, where opioids are available only in the pharmacies of referral hospitals, and where morphine and codeine are frequently out of stock (as are all medical supplies). Nurses, for their part, may limit the use of opiates for pain management, and thereby the demand they broker, on account of widespread anxieties about creating addiction. And of course the presence of opioids in a broader pharmacy network does potentially invite the development of a black market in highly addictive drugs—a dynamic the Ministry of Health quite understandably wishes to avoid. In addition, a lack of expectation around chemical palliation also shapes patient demands. In other words, if patients do not know that such relief is possible, they are much less likely to demand it. M’s agony was created out of a complex political, economic, technocratic, and cultural history. In a place where the reliance on chemical analgesics is as greatly attenuated as it is in Botswana, efforts to socialize pain are particularly important, if subtle. Nowhere perhaps is this more important than in relation to cancer. In the PMH colposcopy clinic, Dr. T, a Central European gynecologist, diagnoses cervical cancers. He remarks to me that the women here endure pain much differently than in Europe—even the pain of stage-three cervical cancer. He has to struggle to convince the nurses to give morphine, because the patients will tolerate the pain with just ibuprofen. In the cancer ward, there is now less hesitation to chemically palliate—evidence surely of the ease by which the culture of palliative care for the critically ill can be changed. The oncologist jokes that he beat it out of the nurses when he arrived, this reluctance to use strong painkillers. That is a good joke: pain is inflicted in some to ameliorate it in others. Hospitals are full of such jokes, and in Botswana there is a rich culture of joking about beating. It should be noted that nurses in oncology (all of whom are Batswana, except for one Cuban woman) do take note of pain and will advocate on behalf of patients for relief when they think it necessary.13 Cancer and palliative care share a history, and pain highlights the particular somatic predicament of Africa’s cancer patients. Oncology in particular is a set of grueling, and at times brutal and violent, practices, albeit ones performed with great hope and determination. And cancers themselves are often extremely and relentlessly painful in their own right, especially in places like Botswana, where so many patients are diagnosed when their disease is already advanced. What are we to make of the insults of oncology at its rawest when we realize that often in Botswana, chemotherapy, radiation, and amputative surgery are performed as palliative measures for terminally ill patients? And yet clinical oncology, like all public biomedical care in Botswana, proceeds with few of the niceties—the powerful antiemetics, the morphine pumps, the fentanyl patches, the sedatives, the informational literature, the counseling—that can smooth the rough edges of chemotherapy, radiation burns, severe mucositis, surgical wounds, nasalgastric tubes, and invasive diagnostic procedures. Cost matters, but cost alone cannot

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explain how a health system could afford to irradiate MmaPula Motswapele’s cervical cancer but could not properly palliate her when terminally ill. When I accompanied local clinic staff to her village home, we found her in severe pain, with profound wasting. She had developed an intense fear of the pain of defecation after the aforementioned costly radiation treatments had created an inoperable fistula so deep and painful that she tried by all measures to resist her own hunger.14

STRIVING FOR SILENCE

Most patients comply with painful diagnostic and therapeutic procedures with minimal complaint. Some of course simply fail to return for subsequent rounds of dreaded chemotherapy, and others reach a point in the advancement of metastatic disease and treatment complications where they are overwhelmed by the pain and so begin to cry out or to grip the nurse’s (or visiting ethnographer’s) arm in a silent plea for help. Over time, acute, prolonged agony has the ability to grind down even those highly practiced in the art of forbearance, such that eventually even the scratch of the sheets, the prick of the needle, and the grip of the blood-pressure cuff become exquisite insults. Many do not mention their pain unless directly asked about it by the doctor, nurse, or ethnographer, but when asked what their problem is, these patients will readily report pain, with great firmness. This is not to say that there is no complaining. In many ways the minor insult is easier to express than the major one. After exchanging greetings during social visits and clinical encounters alike, elderly women often recite a litany of places in their body where it hurts. Such are the privileges of old age. Cancer patients, or their relatives, protest the nausea of chemotherapy, which for some can be overwhelming. But generally in Botswana, people from approximately age five up are expected to endure all but the worst pain in silence. The few who do cry excessively are sources of hilarity for onlookers (including medical staff ), and even for themselves. This means that subtle calculations are continually being made by onlookers, who would never laugh at the cries of a patient they deemed to be in true agony or distress.

F I E L D N OT E S

Achieving Silence in the Surgical Ward

June 18, 2008 We are rounding [i.e., making rounds] in a female surgical ward, because we don’t have a bed in oncology for Margaret, the woman with the massive Burkitt’s lymphoma swelling in her thigh. While there we can visit our post-mastectomy patients. At the far end of the cubicle, I see Dr. Z, a senior surgeon from India who has been working at PMH for decades, with his team. The woman in bed 1 begins crying out in pain as he palpates her. We all turn to look. Dr. Z is firm and a bit irritated. Non, Mma. You may not do that! We see these

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problems all the time and I know it may hurt, but it is no reason to cry. He chastises her further and then continues with his exam. She is now quiet with maybe 7 or 8 people all looking at her. Almost Achieving Silence in the Obstetrics and Gynecology Ward

March 31, 2007 9:30 p.m. I arrive at the Labor department for the night shift and meet Dr. M, a Bangladeshi doctor in his early forties, who is currently assigned to Obs and Gynae. We go straight to Gynae. There is a patient—a woman age 41 moaning and writhing in pain. She is in the corridor on a narrow gurney. She has had pethidine in Accident and Emergency and is still in a good deal of pain. Dr. M. takes her case history. She’s been bleeding and gets bad pain each period since 2001—but this time is by far the worst. Grava 5 para 2. Dr. M examines and suspects fibroids—he can feel a large one. As he examines and she cries out he says each time firmly, but gently: NO. Try to tolerate. And she does. The crying stops, but she is still moaning. An obese woman in bra and panty. She’s had 80 mg pethidine already, but when we see her she is still writhing, putting her leg into the handle of the supply closet door to brace herself while on the exam table, clutching the table, etc. Dr. M tells the nurse to give her 100 mg IM stat of pethidine. It is amazing that she was in so much pain—but when she had to climb from the stretcher onto the exam table she just was able to focus and get it done though I am sure it was a huge challenge for her. Dr. M acknowledges to her: This is very painful!—but explains it is not life-threatening. But that it will have to come out. Achieving Silence during a Bone-Marrow Biopsy in Oncology

January 31, 2007 It is about 4:30 p.m.—nearing the end of a long day that began at 7:45 a.m. in the incredible heat of Botswana’s summer. This will be Dr. A’s very first bone marrow biopsy. He has watched Dr. P perform many of these procedures—but now it is his turn to try himself. The patient, O, speaks good English. He has been waiting on one of the long benches outside the clinic for his turn. O is in his mid forties, and he has what looks like a hematological tumor in his abdomen of unknown origin. By sampling his bone marrow, Dr. P [the German hematologist/oncologist and head of Botswana’s cancer ward] hopes to identify the precise nature of the tumor and to learn if the tumor is a metastasis that actually originated in O’s bone marrow. This is explained to O: We are to do a test so that we can help you with your cancer. You will need to lie still. Kitso, one of the nursing sisters (a really excellent nurse) in her early 30s, sets up a sterile surgical pack on the small cart next to the high narrow exam table. We pull the exam table away from the wall so that Dr. P can fit alongside Dr. A, a medical officer (“resident” in American terms) from Egypt who has been assigned to the oncology ward, though his specialty is actually anesthesia. Kitso, a student nurse, and I are all on the other side. After being instructed to do so, O takes his shoes off, pulls his trousers off, folds them and places them on an empty chair, pulls up his t-shirt a bit, to expose his buttocks. He lies face down, head tilted towards Kitso and me on the table, the student a bit behind us. You must remain still. Drs. P and A both put on sterile gloves from the packs over the regular latex exam gloves. Dr. A wipes the area with betadine (a rust-colored antiseptic). They give O a shot of local anesthetic first. This will numb the flesh on his buttock and make it possible for them to

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go through the flesh with the big boring needle. But it will not numb the bone itself. The needle is very large, and hollow. O is lying on his stomach, and so he cannot see how big the needle is. Dr. A guides it in until he hits the bone, then he pulls the needle guide out. Now comes the painful part, the anesthetic we use does nothing for the pain of extraction, Dr. P explains to me, knowing my interest in pain. Keep still, they tell O, and I keep my hand on O’s upper back in what I hope is a gesture of comfort and solidarity. Dr. A starts drilling into the bone, twisting the boring needle in a mechanical way that requires deep pressure, and hard physical labor. Turning and turning the needle with effort. At one point Dr. P has to step in, because Dr. A is not hitting the bone quickly enough. He lays his hands over Dr. A’s and guides him, showing him how the bone runs in one direction and it will be easier to run with the bone. O’s eyes are open. He is still. Dr. A keeps drilling. Dr. P explains to me: You see as you drill in, it pushes the material further in—so in extracting the sample you have to wiggle the drill back out while holding a finger over the opening in the needle where you removed the guide—this will make a vacuum. It has been at least 15 minutes. Kitso turns to me and says BOTLHOKO! (Setswana: PAIN!). I almost don’t dare look at poor O—but there he is still as can be, his face pouring sweat. My only job was to open the specimen container of formalyn and pour a bit out to make room for the sample and even this small thing I was having a hard time managing. The last thing I wanted was to be the reason this procedure needed to be repeated. Dr. A pulls out the core sample and drops slices of it into my jar of formalyn. He too is sweating. Dr. P puts the lid on the container and then, not trusting the pathologist entirely, presses a few pieces between glass slides to examine personally, taking care not to crush the cells. Dr. A presses a piece of betadine-soaked gauze over the wound, and then we hand him strips of tape to cover it. He and Dr. P pull off their gloves and step out of the clinic and across the breezeway to the lab to take the slides for staining. Kitso folds up the used surgical packs and goes with the student nurse to deposit the used instruments. O pulls up his trousers and comes and sits down next to me on one of the other empty chairs in the clinic room. He turns to me and quite calmly says in a combination of Setswana and English: Well, that was certainly the worst pain I have ever experienced in my life. Please tell me that they don’t ever do that to children. I can’t even imagine what would happen if they did that to a child. He looks a bit dazed. I say, OK, I won’t tell you, but yes it is done to children and it takes several adults holding them down to accomplish. Tell me again, why exactly they did that to me? I try to give him a more detailed explanation of the biomedical logic behind the procedure. It is hard to express in Setswana, and I stick mostly to English. But I too am dazed—even though Kitso had said “BOTLHOKO!” I hadn’t fully realized the extent I think, since O had lain there so calmly until I talked to him afterwards. O wants to leave to catch his bus, he needs to squeeze into a crowded minibus taxi to the bus rank, from which he will catch a bumpy bus ride to a stop in his village, and then walk the path to his house. I check with the doctors and let O go, he will return next week for the results.15

In the oncology ward, an open ward of twenty beds, there was pain as far as the eye could see, yet it was rarely given voice. But even pain that remains unvocalized is nonetheless meant to be actively heard, anticipated, and negotiated. The social nature of pain

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and of embodiment in Botswana places a grave burden upon both patient and practitioner. Unlike the individuated patient encased in her envelope of skin as envisioned by contemporary clinical practice, here patients’ surgical and other anxieties are as much about maintaining composure in front of others as they are about the potentially isolating, individuated experience of bodily pain. Kitso did her job well by announcing “BOTLHOKO!” She did it so that O would not have to. Effective nurses here often announce the pain of patients. “Botlhoko!” they will say during a bone-marrow biopsy. “Botlhoko, sorry my dear, botlhoko!”—while cleaning a necrotic wound. Of course not all nurses are so effective. The entire bone-marrow biopsy is enacted as a drama of few words, but of many meaningful glances, looks, gestures. Bodily contact keeps participants linked in a silent network of social connection, and this socialization is an inherent part of palliation and healing. As the procedure ends, O speaks to me, drawing me into his experience, seeking to socialize his pain. In an in-patient ward, with minimal and highly regulated visiting hours, with patients drawn from a catchment stretching hundreds of kilometers, socializing pain is one of the most significant tasks facing the oncology team, where the ward as a social space must do some of the proxy work of the family. Botswana’s cancer patients come to the ward usually after some months or even years of debilitating pain, fearful for their children, parents, siblings, and lovers as much as for themselves, uncertain of the outcome. The anxiety of pain in oncology is also the anxiety of death, of orphaning one’s children, one’s parents, one’s siblings, one’s lover. They learn of cancer mainly through experience, and through a lengthy quest for relief, but they are almost entirely disempowered by rituals of communication and process that seek to shield and protect them from knowledge of their fate. Though they embrace biomedical practice, it is within a context where its hegemony is far from certain. And lastly, of necessity, they bear these procedures with minimal expectation of chemical palliation. I think there is a way in which a particular institutional culture in the hospital and clinics meets a particular patient culture of complaint to complicate the problem of pain. In the clinic patients rarely announce their pain unasked. This job is left to the relatives who accompany them, or else it is left up to the doctor to ask them. In interviews and clinic visits, relatives often revealed a tremendous depth of concern for the pain of their loved ones. In private homes mothers, aunts, daughters, brothers, fathers, and even entire families might wake in the night to stay with and provide solidarity and comfort to relatives whose pain was intense enough to prevent or interrupt their sleep (though not every patient is fortunate enough to have such a family). Young men in their twenties would pause in interviews with me to reflect on how loved and well cared for they were by a favorite aunt or mother who massaged them and sat with them through endless nights of wakeful pain. Such patients knew that their relatives, motivated by care and love, read them closely, noticing when they became too quiet by day, or too restless or mournful at night, seeking out and affirming their pain. In clinic visits when patients failed to mention their own suffering, accompanying relatives would often raise the

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issue, requesting assistance for their patient. For those like M, whose relatives were far away, it fell to the clinical staff, or a patient in a neighboring bed to announce his pain, as Dr. P had done in telling Mma L, “As you can see it is quite painful.” Pain begs a response. In 2006 my friend Boitumelo and her sister-in-law Glorious held down Glorious’s twenty-three-year old son, D, and forced morphine down his throat. D was dying of a head and neck tumor that had already resulted in the surgical removal of a quarter of his jaw. The tumor was now pushing his eye out of its socket. Profoundly disfigured, perpetually nauseous, and in serious agony, D “just wanted to let the pain kill him,” but his mother and aunt felt differently. Unfortunately, by this stage in his disease the maximum dose of oral morphine was providing him with only thirty minutes of relief. While patients like O usually sat calmly and quietly for bone-marrow biopsies and aspirates, and even lung biopsies performed with only a superficial local anesthetic, when asked directly, they would report intense burning or crushing pain. Some writhed or moaned or wept as the nurse painted gentian violet into open sores in their anus or mouth, the sores themselves products of palliative radiation treatments. Others sat with teeth clenched as I drove them to the private hospital across town to get a radiological consult—carrying back to PMH X-rays riddled with the clear white circles of bone metastases that explained why they winced every time I hit a bump in the road. Pain, after all, was what had pushed so many of them through the health referral system and into the ward and clinic. But expressions of pain were highly constrained. There is a complex logic to this disposition. Bodily reserve and continence in the face of pain is in and of itself a technique of autopalliation. Women learn during labor, and children during the scrapes and accidents of childhood, that becoming overwrought only intensifies their pain. In the past, this knowledge was further concretized during painful initiation rituals. This is a cultivated disposition—one that is respected as much for its rationality as because it is a mark of self-discipline and control. Unfortunately, this logic, which is never recognized as the product of an intellectual effort to grapple with the dilemma of pain, produces contradictory effects in contemporary biomedical settings.

PA I N A N D L A U G H T E R

There is also, sometimes, absolute hilarity in the face of pain. Patients will laugh in interviews when talking about their pain or the pain of others. Women reference labor pains and laugh at the image and the memory. And in the oncology ward and clinic, somewhat to my surprise, I have found (and deeply enjoyed) that laughter is ubiquitous: elderly women performed outrageous, hysterical pantomimes of the predicament of simultaneous nausea and diarrhea after chemo; middle-aged men mock the very German mannerisms of the oncologist; young men and women make deadpan humor out of their hair loss; women with breast cancer joke about their own fear of death. There was one truly funny fifty-year-old woman who would joke about going out and hooking for

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tamoxifen. And then there is the black humor that sometimes follows death, when an oncologist strides into the ward and asks the nurses, “Which of you killed my patient?” In the final section I will explore the way in which this laughter begins to open up a social phenomenology of pain in Botswana’s cancer ward.

F I E L D N OT E S

December 19, 2006 A woman patient, in her 50s(?), who is also a nurse, is lying on the narrow table in the clinic office. She is getting a bone marrow aspirate—but she doesn’t want it. She had one in 2003, and she doesn’t want it again. But it takes only two minutes, Dr. P insists. They negotiate as she tries to wheedle out, but then he does it, quickly, plunging the needle into her sternum. She whimpers, he talks her through—there is a small wail, and then it is over. Now everyone is laughing. The other nurse in the room kept saying sorry, sorry as the procedure went on. They know each other. “Sorry, my dear.” But then she burst out laughing at the wail. In the end, even the patient laughed when told by her friend that she had cried like a baby. Even ten minutes later another small bout of laughter at the memory sends us all up again. January 8, 2007 A young woman, 19, with breast lumps. Probably not cancer—she needs an aspirate and there is much struggle. She keeps wriggling away. Her aunt is laughing so hard at the spectacle, and then she says she needs to leave the room. Dr. P asks the aunt to hold the patient’s hand—he is doing it very quickly, but the aunt starts laughing and leaves. We all laugh—all of us. She struggles more and 2 nursing assistants and the nurse all now are holding her and laughing—it is very comical and Dr. P is chuckling. Chasing her across the table. Just a small prick. It is nothing. You must sit still. Why all this fuss? This is not painful really. Afterwards she finally has it done, lying down and three people helping hold her in place—Dr. P jabs the needle in, pushing it in and out several times to collect any possible calcius material in the lump. She is crying and the nurse is starting to look a bit annoyed (a young nurse—L, she is only in her early 20s) and Dr. P asks what is wrong? It’s over. But she says botlhoko (pain) in a quiet voice and looks injured and angry. March 13, 2007 Dr. P needs to do a fine-needle aspiration on a 3-and-a-half-year-old boy. He gives him a banana first, trying to make friends. Then, at the nurse’s instruction, the boy hands his mother the banana and lies on the table as Dr. P says—“small prick”—and then jabs the needle into the swollen lymph node on the boy’s neck. The kid is screaming and writhing, so the whole thing is chaotic, but the procedure is over in a minute and the nurse, myself, and the nursing assistant have successfully held the boy still enough to get the needle in and out. Afterwards he is crying and screaming and lying on the table demanding his banana—ke kopa banana ya me, banana, banana! His mother gets up and brings it to him. Dr. P is happy that he wants to eat his banana now, feeling certain this will calm him down, and terribly proud that he has thought to give him a piece of fruit. As Dr. P turns his back

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to empty the syringe onto the slides, the boy comes up behind him and throws the banana at Dr. P’s bum with all his might. Everyone collapses to the ground in laughter.

Missionaries, expatriate clinicians, and other observers from the nineteenth century through to the present often took such examples of laughter in the face of the pain of others as a troubling comment on the nature of care and compassion in Botswana, or as a curious cultural artifact (Landau 1996). And yet upon closer examination it appears to be something other than just insensitivity or some feature of an exotic culture at play. In fact, the banana-throwing boy became a favorite memory in the clinic, affirming as he did that the procedure was painful, though we all (including the patient) were meant to pretend that it wasn’t. The laughter was particularly cathartic for the oncologist, who spent his days inflicting pain in the name of care. Laughter, it seems, has long been a social strategy for shaping particular forms of autopalliation. Laughter, when it works, as in the case of the nurse/patient above, is meant to socialize and redirect patient anxiety into the disposition of calm forbearance that lies at the heart of autopalliation. It is followed by patting or stroking and the repetition of “sorry, sorry”—a common way of soothing babies and small children. When laughter doesn’t work, as in the case of the young woman with the breast aspiration, it is put down to the dramatic excesses and foolishness of the young, and this, too, is comical. In the same way, women often laugh and openly mock the screams of young women in labor; their cries are seen as a sign that these girls, who thought they were ready for sex, are not yet ready for motherhood. This is certainly not to suggest that the laughter is disingenuous, or an explicit and conscious strategy, but rather to remark on its social effects. If pain with its potential for isolating embodiment threatens social rupture, laughter offers the prospect of reestablishing an embodied sociality. I do not intend to be overly functionalist here. Laughter is often an overwhelming experience that comes on suddenly, not a practice that emerges out of purpose and forethought. We know that laughter, like all emotional experiences and expressions, has a cultural logic, and that it is possible to decode this logic, though at the risk of taking all the fun out the laughter itself. Some of its joy, no doubt, derives from its irreverence. Laughter in the oncology ward often acted to acknowledge the absolute absurdity of misfortune. This, as we well know, is not unique to Botswana, and while there I was often reminded not only of Bakhtin, but also of keeping my friend Matthew company while he sat receiving the chemo drip for the liver cancer that killed him back in 1994 at age twenty-eight. When the nurse would check in and ask if he was OK, he would reply, “Nothing to worry about here, just a little cancer,” and somehow it was absolutely hilarious to us. Laughter often comes in moments when a cultural norm fails to be enacted—the patient fails to keep silent, the doctor fails to maintain his authority—and in its recognition of the absurd, laughter reinforces the norm, by socializing it. In none of these scenarios does anyone laugh alone!

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Of course laughter can be cruel, like when R, a long-standing KS patient, cried all the way back to her bed from the toilet, where defecation had been painful. Her overwrought cries, so out of place on the ward, were met with cynical laughter by the nurses. But R had a long history in oncology, and though she could be wickedly funny in her own right, cracking jokes that would have us howling with laughter, she was also “naughty,” as one fellow patient put it, drinking to excess, sleeping with many men, and even joking about making a sexual advance on her own brother. “She likes this hospital too much,” a nursing assistant commented, meaning that R was not taking enough responsibility for her own well-being. Pain and laughter, as fundamental and at times overwhelming bodily experiences, point to the potential for both positive social connection and profoundly isolating social alienation, and they often bundle together for just this reason. They can counteract and balance or accelerate one another—and in tandem they reveal something of the strength of social embodiment. In Tswana medicine and popular thought, pathological experience is at least in one key sense the outcome of social rupture and antagonism. In this configuration pain is a fundamentally social phenomenon, and palliation, like healing, an attempt to resocialize through the benign intimacy of companionship, physical touch, and, of course—laughter. This socialization and intimacy that laughter provides is especially critical in the face of cancer. Because of the constraints of the health system, many cancer patients not only are suffering from pain, but also must endure the disfigurement of tumors or amputations. There are some whose throats overflow with saliva because they are entirely blocked by an esophageal tumor; others stink because necrotic tumors have broken through their skin, exposing rotting flesh.16 Sociality is potentially tenuous for these patients, and laughter all the more powerful for its potential not only to facilitate autopalliation, but also to strengthen and animate benign social connectivity, which is healing and care for Batswana. Laughter, of course, is not the only popular response to pain in this culture of silent expression. Nor did callousness seem to be at issue when S, a woman with stage-four metastatic breast cancer began crying out in terrific pain in the ward. In my field notes I wrote, “After lunch in the ward, S—the woman with metastatic cancer of the breast, who got chemo in a lumbar puncture on Friday, is really crying out in pain. This is such an unusual sound in the oncology ward. Drs. A and P and Mma M all hurry over. She has a crushing pain in the head and wants to vomit. Dr. A doubles her dose of pethidine and then there is a question—Does she have meningitis? She will get antibiotics just in case, etc. But there is a deep and swift reaction to her crying out in pain. I am impressed.” Though pain threatens to isolate an individual in her body, ideally (if not always in practice) every effort is made to socialize it through active affirmation of its presence, through palliation, through laughter, through bodily contact. Many patients, when I asked them if they thought their pain had a purpose, remarked on its ability to deepen their empathetic and perceptive capacities. They replied that it had given them new insight into their fellow citizens in the “country of the sick,” as Susan Sontag would have put it. Some remarked that the purpose of pain was to

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cause them to remember God, and to recognize and care for others in times of suffering. And yet, for many veteran patients, the experience of traumatic pain opens them to perceiving pain in others without any need for words. Doubt was no longer an issue, for they knew pain. Some felt that they had to turn away when they now witnessed the pain of others. It was simply too exquisite, too intense of a mnemonic for their own agony, now that they had such a clearly embodied sense of what a grimace, a cringe, a tightly held brow indexed. Some found themselves comparing their pain with that of others they met on the ward or while waiting in the clinic, measuring their own pain against the presumed suffering of others, “placing it on the scale to weigh,” as of the patients put it. In this way they either consoled themselves, openly acknowledging the pain of a fellow patient, or affirmed their sense that their own suffering was indeed extreme. Maybe pain doesn’t shatter language; maybe instead it is a language—one that needs to be learned.17

CONCLUSION

I have tried to suggest that pain is a fundamental social experience in Botswana’s cancer ward. Pain drives patients into the institution, and pain is also created by the practices of the institution itself. Yet, despite the fact that pain is one of the central animating forces of biomedical care in Africa, of which Botswana’s cancer ward is but one instantiation, the biomedical technologies of palliation are in short supply and put to often uneven and uncertain use. Pain reveals the intensely social nature of the ward; and the ward, the intensely social nature of pain. But in this context, the mechanisms and semantics of acceptable expression are particular, and often difficult to achieve. There may be problems of expression and access, but they do not center around doubt. Into the breach of expression comes laughter, a social experience for re-instantiating and reestablishing community in moments of terrible anxiety and duress.

C O D A O N A FA I L E D L E A R N I N G C U RV E F I E L D N OT E S

January 20, 2007 In the bed opposite Michael’s in men’s surgical lies M, the man with the botched amputation, which is now scheduled to be cleaned up, the bone removed, etc. He is still here. M sees Dr. P and beckons him—then, after Dr. P leaves, he grabs the male nurse who is with me and asks him for pain meds—the pain is too much—“I need an injection.” The nurse says no, he can’t have an overdose of pethidine. But the nurse hasn’t looked at the file, I am not sure if he knows when the last dose was. The patient says maybe I can take it at noon— and the nurse agrees. I am not sure why he is still on pethidine and not on morphine. The nurse doesn’t seem concerned about this. He wants to ask me instead about job opportunities in the US. M, empowered by my presence in this context where my white skin and moniker (“Dr. Livingston”—as Dr. P insists everyone call me) causes this nurse to mistake me for an American doctor, is learning to ask for relief. Yet, the effort comes up short.

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N OT E S

1. See, for example, Travis 2007a and Morris 2003. For Botswana, see Botswana National Cancer Registry, Analysis of Registered Cancer Patients 1986–2006 (2006). 2. For comparative rates, see the International Agency for Research on Cancer (IARC) global fact sheets at http://globocan.iarc.fr/ (accessed June 14, 2010). Note also that there is much more likely to be serious underreporting of cancers in Botswana, where the registry is new, diagnostic sites are few, and screening nonexistent, except for a new and still developing pap-smear program for HIV-positive women (Morris 2003). 3. I say “public provision” because the drugs are provided free of charge to all citizens who require them. But the program itself is provided through a public-private partnership of which Botswana pays 80 percent of the bill. Anthropologist Betsey Brada (2011) is currently researching these partnerships in Botswana. 4. Many of these ideas and analytic frameworks around improvised medicine come out of conversations with Steve Feierman about an ongoing collaborative project. I am grateful to Steve for sharing his ideas about how biological, technical, and social challenges combine to shape clinical uncertainties in Africa. On oncology, see the excellent work of Kenyan anthropologist Benson A. Mulemi (2010). 5. Because of the lack of screening capabilities, a majority of Botswana’s cancer patients are diagnosed after their disease is already advanced. Such cancers are widely recognized to cause moderate to severe pain in the vast majority of patients (Cleland et al. 1996; Daut and Cleland 1982; Portenoy and Lesage 1999; Foley 1979). 6. Keith Wailoo (2010) is currently writing a book that hinges on this question in American medical policy. 7. Tshenolo Thebe and Difelo Botsang, interview with the author, Kumakwane, December 7, 2006; Mmatli Rannokgwane, interview with the author, Thamaga, December 10, 2006; Mma Mantshadi, Ikgopoleng Keoreme, Ketlantshang Piet, and Omphemetse Piet, interview with the author, Kumakwane, December 9, 2006; Modise Thebe, interview with the author, Kumakwane, December 15, 2006; Modisaetsile Thapelo, interview with the author, Kumakwane, December 15, 2006. 8. Pain medicines, however, do have a thingy-ness. Patients are clear that some medicines are “painkillers,” separating pain from pathology. This dynamic of separation and attendant individuation around pain (in dentistry) has been beautifully articulated by historian Paul Landau (1996) in relation to early-twentieth-century mission practice. 9. Pethidine is a strong synthetic opioid. American readers may be familiar with its brand name, Demerol. 10. Later there would be some debate as to why they failed to do this, with the surgeons arguing that M himself had requested to keep as much of his thigh as possible, balking at the loss of the femur. My point here is not to showcase surgical failure. I am not qualified to judge who, if anyone, was at fault in this case of amputation gone wrong, and I have the utmost respect for the skill and commitment of the hospital’s orthopedic surgeon. Advanced Kaposi’s sarcoma often necessitates amputation, but surgeons are faced with a difficult challenge since the skin above the amputation site is often unhealthy, thus making it difficult to close the wound safely.

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11. Pain assessment has been part of nursing training in Botswana since the mid-1970s, but is not integral to daily practice in the hospitals and clinics (Manyere 1996, 3). 12. University of Wisconsin Pain and Policy Studies Group, Availability of Morphine and Pethidine in the World and Africa, table 1 (Vienna: International Narcotics Control Board, 2005). These statistics need to be taken with a grain of salt. Some necessary figures appear to be missing, and there are some dramatic and unexplained spikes. Distribution through Central Medical Stores (the national centralized pharmaceutical procurement system) has been a problem in Botswana, as it scales up the quantity and array of drugs available in the face of changing epidemiological norms, the AIDS epidemic in particular, and as attempts to localize purchasing and distribution continue. It is not my aim to pin down exact figures, but rather to make the general point (which can be supported by the statistics) that in this place with a lot of sick people, strong painkillers are not widely used. 13. Yet, upon occasion I also found myself—an ethnographer with a public-health background but no medical training—being the one who suggested or requested that a patient receive pethidine before wound cleaning, or a prescription for morphine tablets for use at home. This, I think, was the result of the pressures of work in this setting, where the clinical staff were extremely busy. The attitude by nurses on the oncology ward, where they were usually fairly attendant to pain, was quite different from that on the medical and surgical wards, where some doctors (mainly European or American expatriates) and one Motswana nursing professor complained about the reluctance of nurses to administer strong pain relief. And yet when I went on rounds with staff in these other wards, I found that often these same doctors did not explicitly ask patients about pain. Nurses in Botswana are shifted among posts every two years, so the explanation is not that oncology nurses had special training in oncology or were otherwise different from the other nurses in the hospital. Rather, the strong personality of the oncologist, his emphasis on palliation as a critical element of cancer care, and the oncology training and ethos of compassion of the nursing matron in charge of the ward were responsible for this marked difference from other domains in the hospital. Once the doctor and nursing matron emphasized palliation as an important practice, nurses in the ward did so as well. 14. MmaPula Motswapele, interview with the author, January 12, 2007. I use pseudonyms throughout. 15. Field notes: I have seen Dr. P do bone-marrow biopsies already, and I understand the purpose. But after my conversation with O, I want to double-check my understanding of the procedure, so I get on the Internet. Web MD and the Mayo Clinic both describe the procedure and advise their presumably middle-class (Internet-accessing) American patients, who learn they may receive a sedative, and who will presumably be provided with a hospital gown to wear during the procedure. The contrast between the description provided online and what I witnessed is instructive: www.mayoclinic.com/health/bone-marrow-biopsy/CA00068; www .webmd.com/a-to-z-guides/bone-marrow-aspiration-and-biopsy?page = 3. 16. For more about disgust and its effects in the cancer ward, see Livingston 2008. 17. I think these patients were trying to convey a sensibility quite like that described by Veena Das (1997) in her meditations on Wittgenstein and pain—a rumination perhaps best explicated by her interlocutor Stanley Cavell (1997). Or, as Carolyn Nordstrom (1997, 171) puts it, “There are many ‘languages’ in any social setting, some competing, even contradictory, but

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nonetheless true. Pain both undermines communication and communicates throughout a society at large.”

REFERENCES

Asad, Talal. 2003. Formations of the Secular: Christianity, Islam, Modernity. Palo Alto, CA: Stanford University Press Botswana National Cancer Registry. 2006. “Analysis of Registered Cancer Patients 1986– 2006.” Gaborone: Republic of Botswana Ministry of Health, Department of Public Health Disease Control Unit, Non-Communicable Diseases Programme. Brada, Betsey. 2011. “Botswana as a Living Experiment.” PhD diss., Anthropology, University of Chicago. Cavell, Stanley. 1997. “Comments on Veena Das’s Essay, ‘Language and Body: Transactions in the Construction of Pain.’ ” In Social Suffering, edited by Arthur Kleinman, Veena Das, and Margaret Lock, 93–99. Berkeley: University of California Press. Cleland, C. S., Y. Nakamura, T. R. Mendoza, K. R. Edwards, J. Douglas, and R. C. Serlin. 1996. “Dimensions of the Impact of Cancer Pain in a Four Country Sample: New Information from Multidimensional Scaling.” Pain 67:2–3, 267–73. Das, Veena. 1997. “Language and the Body: Transactions in the Construction of Pain.” In Social Suffering, edited by Arthur Kleinman, Veena Das, and Margaret Lock, 67–91. Berkeley: University of California Press. Daut, R. L. and C. S. Cleland. 1982. “The Prevalence and Severity of Pain in Cancer.” Cancer 50: 1913–18. Finkler, Kaja, Cynthia Hunter, and Rick Idema. 2008. “What Is Going On? Ethnography in Hospital Spaces.” Journal of Contemporary Ethnography 37 (2): 246–50. Foley, K. M. 1979. “Pain Syndromes in Patients with Cancer.” In Advances in Pain Research and Therapy, edited by K. M. Foley, J. J. Bonica, and V. Ventafridda, 59–75. New York: Raven Press. Good, M. J., P. Brodwin, A. Kleinman, and B. Good, eds. 1992. Pain and Human Experience: Anthropological Perspectives on the Lived Worlds of Chronic Pain Patients in North America. Berkeley: University of California Press. Human Rights Watch. 2009. Unbearable Pain: India’s Obligation to Ensure Palliative Care. New York: HRW. International Narcotics Control Board. 2005. Report of the International Narcotics Control Board for 2004. New York: United Nations. http://www.incb.org/documents/Publications /AnnualReports/AR2004/AR_04_English.pdf. Jackson, Jean. 2000. Camp Pain: Talking with Chronic Pain Patients. Philadelphia: University of Pennsylvania Press. Koshy, Rachel C., et al. 1998. “Cancer Pain Management in Developing Countries: A Mosaic of Complex Issues Resulting in Inadequate Analgesia.” Supportive Care in Cancer 6:430–37. Landau, Paul. 1996. “Explaining Surgical Evangelism in Colonial Southern Africa: Teeth, Pain and Faith.” Journal of African History 37 (2): 261–81. Livingston, Julie. 2008. “Disgust, Bodily Aesthetics, and the Ethic of Being Human in Botswana.” Africa 78 (2): 288–307.

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Logie, Dorothy, and Mhoira Leng. 2007. “Africans Die in Pain because of Fears of Opiate Addiction.” British Medical Journal 335 (7622): 685. Long, Debbie, Cynthia L. Hunter, and Sjaak Van der Geest. 2008. “Introduction: When the Field Is a Ward or Clinic: Hospital Ethnography.” Anthropology and Medicine 15 (2): 71–78. Manyere, Irene. 1996. “The Uses of the Pain Assessment Tools by Nurses in Botswana in Assessing and Managing Pain.” BEd thesis, Nursing, University of Botswana. McNeil, Donald. 2007. “Drugs Banned, World’s Poor Suffer in Pain.” New York Times, September 10. http://nytimes.com/2007/09/10/health/10pain.html. Morris, Kelly. 2003. “Cancer? In Africa?” Lancet Oncology 4 (1): 5. Mosweunyane, Tjantilili. 1994. “The Knowledge of Nurses Working in Botswana Health Care Settings in Regard to Pain Control.” BEd thesis, Nursing, University of Botswana. Moyo, J. M. 1994. “The Extent to Which Nurses Meet Clients’ Needs for Pain Management within the First 48 Hours Post C-Section,” BEd thesis, Nursing, University of Botswana. Mulemi, B. A. 2010. “Coping with Cancer and Adversity: Hospital Ethnography in Kenya.” PhD diss., University of Amsterdam. Murray, Scott A., Elizabeth Grant, Angus Grant, and Marilyn Kendall. 2003. “Dying from Cancer in Developed and Developing Countries: Lessons from Two Qualitative Interview Studies of Patients and Their Carers.” British Medical Journal 326 (7385): 368. Accessed online at bmj.com. Parkin, D. M., et al. 2008. “Part I: Cancer in Indigenous Africans: Burden, Distribution, and Trends,” Lancet Oncology 9 (7): 683–92. Portenoy, R., and P. Lesage. 1999. “Management of Cancer Pain,” Lancet 353 (9165): 1695–1700. Nordstrom, Carolyn. 1997. A Different Kind of War Story. Philadelphia: University of Pennsylvania Press. Rouse, Carolyn. 2009. Uncertain Suffering: Racial Health Disparities and Sickle Cell Disease. Berkeley: University of California Press. Scarry, Elaine. 1985. The Body in Pain: The Making and Unmaking of the World. Oxford: Oxford University Press. Travis, Kate. 2007a. “Cancer Control in Africa.” European Journal of Cancer 43:1493. ———. 2007b. “Cancer in Africa: Health Experts Aim to Curb Potential Epidemic.” Journal of the National Cancer Institute 99 (15): 1146–47. Van der Geest, Sjaak, and Kaja Finkler. 2004. “Hospital Ethnography: Introduction.” Social Science and Medicine 59 (10): 1995–2001. Wailoo, Keith. 2010. “The Politics of Pain: Liberal Medicine, Conservative Care, and the Governance of Relief in America since the 1950s.” The Fielding Garrison Lecture, presented at American Association for the History of Medicine Annual Meeting, Rochester, MN, April–May. World Health Organization. 2003. A Community Health Approach to Palliative Care for HIV/ AIDS and Cancer Patients. http://whqlibdoc.who.int/publications/2004/9241591498.pdf.

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10 LIVING AND DYING IN MENTAL HEALTH Guns, Race, and the History of Schizophrenic Violence

Jonathan M. Metzl

Random acts of mass violence raise the specter of death from schizophrenia. This is because, in the United States, random acts of violence invariably produce widespread anxieties that “sane” persons will be killed by “insane” ones. For instance, American popular opinion often reflexively focuses on the causal impact of mental illness in the aftermath of mass shootings. In the days following the school shooting in Newtown, Connecticut, in December 2012, the American media rushed to diagnose the shooter, Adam Lanza, as such. “Was Adam Lanza an Undiagnosed Schizophrenic?” asked a headline in Psychology Today (Turndorf 2012). “Too many people with acute schizophrenia have gone untreated,” added the New York Times. “There have been too many Glocks, too many kids and adults cut down in their prime” (Steinberg 2012). Schizophrenia also featured prominently in National Rifle Association president Wayne Lapierre’s press conference held one week after the shooting. Lapierre blamed “delusional killers” for American violence while calling for a “national registry” of persons with mental illness (Kliff 2012). Conservative commentator Anne Coulter then upped the ante, arguing that “guns don’t kill people—the mentally ill do” (Coulter 2013). Such associations undoubtedly make sense on many levels. Crimes like Newtown fall outside the bounds of sanity: who but an insane person would do such horrific things? And of course, narrative scripts linking guns and mental illness arise in the aftermath of many mass killings, in no small part because of the mental-health histories of the assailants. Aurora, Colorado, movie-theater shooter James Holmes “was seeing a psychiatrist specializing in schizophrenia” (WNYC 2012). Classmates felt unsafe around Arizona shooter

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Jared Loughner because he would “laugh randomly and loudly at nonevents” (Pickert and Cloud 2011). Mother Jones magazine reported that the perpetrators of “at least” thirtyeight of sixty-two mass shootings in the United States displayed “symptoms . . . including acute paranoia, delusions, and depression” prior to committing their crimes (Follman 2012). However, the contention that schizophrenia or other serious mental illness causes particular acts of violence is more complicated than it might seem. On the aggregate level, surprisingly little population-level evidence supports the notion that individuals with serious mental illness are more likely than anyone else to kill other people. According to Columbia University psychiatrist Paul Appelbaum and Duke psychologist Jeffrey Swanson, less than 3%–5% of American crimes involve people with mental illness, and the percentages of these crimes that involve guns are actually lower than the national average (Appelbaum and Swanson 2010). Similar findings appear in databases that track gun homicides, such as the database of the National Center for Health Statistics—which found that fewer than 5% of the 120,000 gun-related killings in the United States between 2001 and 2010 were perpetrated by people with mental illness (CDC 2013). Studies also suggest that the stereotype of the violent madman represents an inversion of on-the-ground reality. Psychologist Paul Nestor (2002) shows that being diagnosed with schizophrenia reduces a person’s risk of violence over time, since the illness is in many cases marked by social isolation and withdrawal. Social workers John Brekke, Cathy Prindle, and their collaborators (2001) illustrate that the risk is exponentially greater that individuals diagnosed with schizophrenia will be assaulted by others rather than the other way around. Their extensive surveys of police incident reports demonstrate that, far from posing threats to others, people diagnosed with schizophrenia have “victimization rates 65 to 130 percent higher than those of the general public.” Similarly, a 2013 investigation by the Portland (Maine) Press Herald (2013) found that “at least half” of persons shot and killed by police in Maine suffered from diagnosable mental illness. Moreover, the overwhelming majority of persons who fit the profile of “mass shooters” and who end up seeing psychiatrists—gun-owning, paranoid, angry white men—do not commit crimes. And psychiatrists are notoriously poor at predicting which of their patients will shoot or attack; psychiatry, after all, is more a preventative science than a predictive one (Swanson 2011; Friedman 2012; RWJF 2012). As Swanson (2011) puts it, “[P]sychiatrists using clinical judgment are not much better than chance at predicting which individual patients will do something violent and which will not.” Why, then, do we associate schizophrenia and other serious mental illness with mass violence, if the association is not based in real-world events? What gives these associations their emotional charge? To be sure, beliefs about the volatility of insanity date back to burr-hole surgery and ships of fools. As the eminent historian Roy Porter (2002, 10–33) aptly described it, narratives of insane violence “may be as old as mankind.” Yet arguments about the timeless nature of stigma against schizophrenia often fail to address the impact of relatively

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recent events on present-day attitudes and beliefs. For instance, the sociologists Jo Phelan, Bruce Link, and their colleagues (2000) show that, in the United States, stigmatizations of schizophrenic and psychotic violence are decidedly second-half-of-the-twentiethcentury phenomena. In an extensive analysis of surveys of public conceptions about mental illness, Phelan, Link, and their colleagues found that comparison of 1950 and 1996 results shows that conceptions of mental illness have broadened somewhat over this time period . . . but that perceptions that people [with schizophrenia] are violent or frightening substantially increased, rather than decreased. . . . [T]he proportion who described a mentally ill person as being violent increased by nearly 2 1/2 times between 1950 and 1996. . . . [T]here has been a real move toward acceptance of many forms of mental illness as something that can happen to one of “us,” but people with psychosis remain a “them” who are more feared than they were half a century ago. (188)

This brief chapter—adapted from a larger study of race, violence, and mental illness (Metzl 2010)—contends that associations between schizophrenia, violence, and guns attain particular valence because of their oft-invisible associations with American anxieties about race. These associations gained charge during the American civil rights era of the 1960s and 1970s in the context of a set of larger conversations about racial protest and social justice. During this vital period, new clinical ways of defining mental illness unintentionally combined with growing cultural anxieties about armed revolt on the part of black political leaders and groups. Meanwhile, reports about new diagnostic technologies merged with concerns about the “uncontrolled” nature of urban unrest. As these historical contingencies evolved, the American public, and at times members of the scientific community, increasingly described schizophrenia as a violent social disease, even as psychiatry took its first steps toward defining schizophrenia as a disorder of biological brain function. The chapter begins by discussing changing twentieth-century relationships between U.S. psychiatric and popular understandings of schizophrenia and increasingly medicalized notions of violence. It then highlights 1960s- and 1970s-era links between U.S. psychiatric concerns about schizophrenic violence and mainstream anxieties about racial protest. The chapter concludes by discussing how the certainty of the diagnosis that many Americans make about insanity and mass violence is undermined by the shifting historical and racialized nature of the discourse surrounding guns and mental illness.

C H A N G I N G A S S O C I AT I O N S B E T W E E N SCHIZOPHRENIA AND VIOLENCE

Early definitions of schizophrenia contained no mention of violence. Coined by the Swiss psychiatrist Paul Eugen Bleuler in his infamous Dementia Praecox, or the Group of Schizophrenias in 1911, schizophrenia initially implied a “loosening of associations” in which

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patients existed in the real world and at the same time turned away from reality (“autism”) into the world of fantasy, wishes, fears, and symbols. Bleuler believed that emotional splitting was accompanied not by violence, but by symptoms such as indifference, creativity, and passion. He wrote: “Even in the less severe forms of illness, indifference seems to be the external sign of their state; an indifference to everything—to friends and relations, to vacation or enjoyment, to duties or rights, to good fortune or bad” (Bleuler [1911] 1950, 7–8, 41–42). When this nomenclature came to the United States in the 1920s and 1930s, doctors deployed this framing to code schizophrenia as an illness of white docility. Psychiatric authors frequently diagnosed academics, poets, women, and eccentrics among the afflicted. Textbook authors cited Bleuler’s emphasis on the intellect and personality to depict schizophrenia as a disease of white, male genius. For instance, in the 1927 edition of his influential Textbook of Psychiatry, the psychiatrist Arthur P. Noyes described a rupture in “the fundamental basis of personality” that resulted in a disorder of “feeling and thinking” in white men. Such patients were “quiet, serious, shy, easily embarrassed and without sense of humor. . . . [I]f he has intellectual opportunities he may attempt to write poetry, particularly of a dreamy, idealistic type. He has a genuine love of nature and is often found alone in the woods and fields; he may be extravagantly enraptured by a beautiful sunset” (1927, 127). Similarly, the 1918 edition of the Committee on Statistics of the American Medico-Psychological Association’s Statistical Manual for the Use of Institutions for the Insane, the precursor of the Diagnostic and Statistical Manual (DSM), explained how “schizophrenia afflicts . . . the seclusive type of personality or one showing other evidences of abnormality in the development of instincts or feelings” (CSAMPA 1918, 24). Given this flowery framework, it is not surprising that many Americans believed that persons with schizophrenia—and particularly white persons with schizophrenia—were to be neither feared nor avoided. The New York Times described schizophrenia as a disorder of “dual personality” found in men of luminosity. Mainstream newspaper articles explained how brilliant white poets and novelists were touched by what they called “grandiloquence,” a propensity toward flowery prose believed to be one of the “telltale phrases of schizophrenia, the mild form of insanity known as split personality” (“Insanity Ascribed to Some Authors” 1935, 23). Meanwhile, popular magazines such as Ladies’ Home Journal and Better Homes and Gardens wrote of unhappily married, middle-class white women whose schizophrenic mood swings were suggestive of “Doctor Jekyll and Mrs. Hyde” (“Are You Likely” 1949)—a theme that also appeared in Olivia de Havilland’s infamous depiction of a “schizophrenic housewife” named Virginia Stuart Cunningham in the 1948 Anatole Litvak film The Snake Pit. Of course, it was far from the case that all persons who suffered from a disease called schizophrenia during the first half of the twentieth century were members of a category called “white.” Rather, American culture marked schizophrenia as a disease of the mainstream in ways that encouraged identification with certain groups of persons while rendering other groups invisible. For example, popular magazines from the 1920s through

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the 1950s incorrectly assumed that schizophrenia was a psychoanalytic condition connected to neurosis, and as a result affixed the term to middle-class housewives. Meanwhile, researchers conducted most published clinical studies in white-only wards. Such strategies occluded recognition of the countless men and women diagnosed with schizophrenia who resided in so-called Negro hospitals and suffered well outside most realms of public awareness (“Insanity: Mental Illness among Negroes” 1949). American assumptions about the race, gender, and temperament of schizophrenia changed beginning in the 1960s. Many leading psychiatric and popular sources suddenly described schizophrenia as an illness marked not by docility, but by rage. This shift went hand-in-hand with shifting beliefs about the “race,” the volatility, and even the politics of the illness as well. Growing numbers of research articles from leading psychiatric journals asserted that schizophrenia was a condition that also afflicted “Negro men,” and that black forms of the illness were more hostile and aggressive than were white ones. In the worst cases, psychiatric authors conflated the schizophrenic symptoms of African-American patients with the perceived schizophrenia of civil rights protests, particularly those organized by Black Power, Black Panthers, Nation of Islam, and other activist groups. For instance, in 1968 the psychiatrists Walter Bromberg and Frank Simon described schizophrenia as a “Protest Psychosis” whereby black men developed “hostile and aggressive feelings” and “delusional anti-whiteness” after listening to the words of Malcolm X, joining the Black Muslims, or aligning with groups that preached militant resistance to white society (155–60). Meanwhile, mainstream newspapers in the 1960s and 1970s described schizophrenia as a condition of angry black masculinity or warned of crazed black schizophrenic killers on the loose. “FBI Adds Negro Mental Patient to ‘10 Most Wanted’ List” warned a Chicago Tribune headline on July 6, 1966, above an article that advised readers to remain clear of “Leroy Ambrosia Frazier, an extremely dangerous and mentally unbalanced schizophrenic escapee from a mental institution, who has a lengthy criminal record and history of violent assaults.” Hollywood films such as Samuel Fuller’s 1963 B-movie classic Shock Corridor similarly cast the illness as arising in black men, and particularly men who participated in civil rights protests.

A F R A M E S H I F T I N T H E C O N T E X T O F A R A C I A L LY C H A R G E D POLITICAL MOMENT

Why did schizophrenia morph in the 1960s from an illness of white docility to one of black violence and hostility? Two key contextual factors help explain the transformation—neither of which suggests any actual increase in violent behavior by angry black men. First, notions of violence became increasingly central to psychiatric definitions of schizophrenic illness. Again, prior to the 1960s, psychiatry posited that schizophrenia was a psychological “reaction” to a splitting of the basic functions of personality. Official descriptors emphasized the generally calm nature of such persons in ways that encouraged

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associations with middle-class housewives and men of genius. For instance, the first edition of the DSM, published in 1952 as Mental Disorders: Diagnostic and Statistical Manual, defined schizophrenia as a psychological “reaction . . . characterized by fundamental disturbances in reality relationships” as well as “emotional disharmony, unpredictable disturbances in stream of thought,” and “regressive behavior” (Mental Disorders, 26–27). But the frame changed in the 1960s. In 1968, in the midst of a political climate marked by profound protest and social unrest, psychiatry published the second edition of the Diagnostic and Statistical Manual (DSM II). That text recast the paranoid subtype of schizophrenia as a disorder of masculinized belligerence. “The patient’s attitude is frequently hostile and aggressive,” the DSM II claimed about the paranoid subtype of the illness, “and his behavior tends to be consistent with his delusions. . . . The patient manifests the mechanism of projection, which attributes to others characteristics he cannot accept in himself” (Diagnostic and Statistical Manual, 33–35). The drive for revision was almost certainly grounded in a desire for diagnostic accuracy, and the revisers likely felt little connection between their task at hand and the politics of civil rights. Yet the DSM II mirrored the social context of its origins in ways that enabled users to knowingly or unknowingly pathologize protest as mental illness. Indeed, the 1960s were an era when the notion that large groups of persons acted in hostile ways while rationalizing their aggression as a justifiable response to the attitudes of others was a tremendously powerful social message. This connects to the second factor that provides context for 1960s-era links between schizophrenia and violence: at the same moment that psychiatry produced the DSM II, questions of violence became increasingly central to civil-rights-era politics. As is well known, mass protest based in nonviolent resistance and civil disobedience, as championed by the National Association for the Advancement of Colored People (NAACP) and the Southern Christian Leadership Conference (SCLC), had led to a series of key victories following the U.S. Supreme Court’s Brown v. Board of Education of Topeka decision of 1954. Sit-ins, boycotts, freedom rides, and other direct-action tactics resulted in major, if painful, steps toward stated goals of desegregation, racial integration, and equality. However, in the aftermath of the Watts riots of 1965, voices from within and beyond the movement argued that equality would never be attained in racist America. Black Power became the rallying cry of Stokely Carmichael (later Kwame Ture), Willie Ricks (later Mukasa Dada), Eldridge Cleaver, and others. Black Power advocates rejected what they held to be the “accommodationist” strategies of mainstream civil rights leaders. Their goal was not so much equality as independence, and as such they believed that African-Americans needed to seize power rather than seek compromise. Carmichael advocated revolutionary violence to overthrow oppression, while denouncing even sympathetic whites. His successor as leader of the Student Nonviolent Coordinating Committee (later the Student National Coordinating Committee), H. Rap Brown (later Jamil Abdullah Al-Amin), famously described violence as being “as American as cherry pie.” In 1966, Huey Newton and Bobby Seale formed the Black Panther Party, an organization that espoused a doctrine of

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armed resistance in the interest of African-American justice. Meanwhile, Pan-Africanists and African nationalists such as Malcolm X described a “global African community” connecting “native” and “diaspora” Africans, or argued, as did Elijah Muhammad, that “the white devil’s day is over.” In 1968, a pair of brothers from Detroit named Milton and Richard Henry (later Gaidi and Imari Abubakari Obadele) argued that U.S. blacks should form their own independent nation-state, the Republic of New Afrika, in the so-called Black Belt South (see Carmichael 2005; Carson 1981; Lewis 1998; Obadele 1975). These two 1960s-era trajectories—psychiatric diagnostic revision and increasingly confrontational civil rights protests—merged in the pages of leading professional psychiatric journals. Growing numbers of research articles from the 1960s and 1970s used DSM II language to assert that schizophrenia was a condition that also afflicted “Negro men,” and that black forms of the illness were more hostile and aggressive than were white ones. Researchers used DSM II criteria to uncover hostile aspects of black schizophrenia, such as paranoia, delusions, and rage, or to associate schizophrenia with civil rights demonstrations. Meanwhile, studies conflated black schizophrenia with Black Power in order to illustrate evolving understandings of the illness as hostile or violent, or used long-standing stereotypes about manic, crazy black men to demonstrate “new” forms of schizophrenic illness. Again, the New York psychiatrists Walter Bromberg and Franck Simon (1968) described a new form of what they called “protest psychosis,” a condition in which the rhetoric of the Black Power movement drove “Negro men” to insanity. In their formulation, black psychosis produced the threat of bodily attacks on “Caucasians” as a result of “antiwhite productions and attitudes” (155–60). Bromberg’s and Simon’s central contention—that participation in civil rights protests caused violent schizophrenic symptoms in “Negro populations” in ways that threatened “white” civilization—also appeared in other mainstream psychiatric research articles in the 1960s and 1970s. An article titled “Six Years of Sit-Ins: Psychodynamic Causes and Effects,” in the International Journal of Social Psychiatry (Pierce and West 1966, 29), argued that Negroes developed “dangerous aggressive feelings” when they participated in civil rights sitins. And an extensive article in the Journal of Consulting & Clinical Psychology (Raskin,Crook, and Herman 1970, 73) argued that “blacks” with schizophrenia rated higher than “whites” on a set of “hostility variables” due to delusional beliefs that “their civil rights were being compromised or violated.” The American Journal of Psychiatry sounded a similar refrain in a study, “Hallucinations and Delusions in White and Negro Schizophrenics” (Vitols, Waters, and Keeler 1963, 472), that linked the finding that “incidence of hallucinations was significantly higher among Negro schizophrenics than among white schizophrenics first admitted to the state hospital system” to the possibility that “there are factors in the Negro culture that predispose to more severe schizophrenic illness.” At the time, it likely appeared to many psychiatrists that an epidemic of schizophrenia was spreading among angry black men. In fact, psychiatry’s frame shift produced new categories of schizophrenic illness.

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A similar transformation can be seen in visual iconography. As but one example, through the 1950s advertisements for antipsychotic medications in leading psychiatric journals showed images of docile white women with schizophrenia. A 1950s-era advertisement for Serpasil (reserpine) in the American Journal of Psychiatry (Serpasil 1955) touted the ways in which the breakthrough medication rendered white women “clean, cooperative, and communicative,” and thus able to calmly suture away their psychotic symptoms in unthreatening placidity with the help of new drugs. Yet by the 1960s and 1970s, antipsychotic-medication advertisements shifted to show angry black men. An advertisement for the antipsychotic medication Haldol that appeared in the May 1974 Archives of General Psychiatry (Haldol 1974) shows the troubling, distorted image of an angry African-American man in an urban scene. The man shakes a threatening, inverted Black Power fist. “Assaultive and belligerent?” the text asks. “Cooperation often begins with Haldol.” The shifting frame surrounding schizophrenia had consequences in real-world clinical settings: starting in the late 1960s, schizophrenia became a diagnosis disproportionately applied to African-American men. For instance, in the 1960s, National Institute of Mental Health studies found that “blacks have a 65% higher rate of schizophrenia than whites.” In 1973, a series of studies in the Archives of General Psychiatry found that African-American patients were “significantly more likely” than white patients to receive schizophrenia diagnoses, and “significantly less likely” than white patients to receive diagnoses for other mental illnesses such as depression and bipolar disorder. Throughout the 1980s and 1990s, a host of articles from leading psychiatric and medical journals showed that doctors diagnosed the paranoid subtype of schizophrenia in African-American men five to seven times more often than in white men (e.g., Delahanty 2001). Central to a discussion of living and dying in mental health, evolving 1960s-era frames for schizophrenia also impacted 1960s-era representations of “crazed” gun violence. Here as well, the language of hostility, aggression, and projected anger allowed for the conflation of madness with anxieties about racial protest. Many men that American mainstream society depicted as being armed, violent, and mentally ill were also, it turned out, African-American. And when the potential shooters were black, American society often blamed “black culture” or black activist politics—not the actions of individual brains—for potential violence. For instance, the Federal Bureau of Investigation spuriously diagnosed many black political leaders with the illness as a way of highlighting the insanity of their allegedly militant revolt against the United States. According to declassified documents, the FBI diagnosed Malcolm X with “pre-psychotic paranoid schizophrenia,” and with membership in the Communist Party and the “Muslim Cult of Islam,” while highlighting his attempts to obtain firearms and his “plots” to overthrow the government (Metzl 2010, 230 n34). In the early 1960s, the FBI also diagnosed Robert Williams, the controversial head of the Monroe, North Carolina, chapter of the NAACP, as schizophrenic, armed, and dangerous during his flight from trumped-up kidnapping charges. As the New York Amsterdam

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News reported on September 23, 1961, in an article titled “FBI Hunts NAACP Leader”: “Agents for the Federal Bureau of Investigation were searching many areas of Harlem this week as part of a nation-wide hunt for bearded Robert F. Williams, Monroe, N.C., NAACP leader. . . . ‘Williams allegedly has possession of a large quantity of firearms, including a .45 caliber pistol. . . . He has previously been diagnosed as schizophrenic and has advocated and threatened violence.’ ” The FBI distributed 250,000 posters to the same effect. Malcolm X, Robert Williams, and other leaders of African-American political groups were far from schizophrenic. But fears about their political sentiments, guns, and sanity mobilized significant public response. Articles in the American Journal of Psychiatry— such as a 1968 piece titled “Who Should Have a Gun?”—urged psychiatrists to address “the urgent social issue” of firearms in response to “the threat of civil disorder” (Rotenberg and Sadoff 1968, 841). And Congress began serious debate about gun-control legislation, leading to the Gun Control Act of 1968.

CONCLUSION

In no way is this brief history meant to suggest that mental illness is socially fabricated, or, worse, that people’s symptoms are somehow inauthentic. Hallucinations, delusions, social withdrawal, cognitive decline, and profound isolation rupture lives, careers, families, and dreams in profoundly material ways. Such symptoms afflict persons of many different social, economic, and racial backgrounds, many of whom are deeply aware of the sense of loss that their disease represents, even if society is less attuned. And again, compelling evidence suggests that many mass shooters do indeed suffer from mental conditions, and that their horrific crimes might have been prevented had they come sooner to the attention of mental-health professionals. At the same time, history suggests that decisions about which crimes American culture diagnoses as crazy, violent, or militant are driven as much by the politics and anxieties of particular cultural moments as by the actions of individually disturbed brains. Only during the civil rights era did emerging scientific understandings of schizophrenia become enmeshed in a set of historical currents that marked particular bodies, and particular psyches, as armed and violent in particular ways. And only during that era did the mechanisms of racialized logic emerge, whereby schizophrenic violence came to represent a threat to civilized society. This history remains invisible today—and this is in part the point. Psychiatry long ago removed terminology connoting aggression and hostility from the DSM, and overt expressions of medical racism became increasingly taboo. Meanwhile, when shootings are linked to crazed, white male shooters, the end result is not bipartisan calls for guncontrol legislation, as was the case in the 1960s, but reaffirmations of gun rights by leading U.S. politicians and by the National Rifle Association. And groups that advocate antigovernment platforms and support the broadening of gun rights to defend against

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government tyranny, such as the Tea Party, take seats in Congress rather than being subjected to FBI scrutiny. Yet, as this history suggests, in the case of schizophrenia, the racialized logic of the 1960s lives on. And when that logic is not overtly linked to black bodies, it spreads in the historically racialized but seemingly race-neutral discourses of mental-illness stigma and gun violence. Mentally ill persons are far more likely to be the victims than the perpetrators of violence. Yet widespread claims that “guns don’t kill people—the mentally ill do” remain both acceptable and largely unchallenged. Questioning the links between living and dying with violence, guns, and mental illness should in no way detract from the horrifying nature of events that transpired at places like Tucson, Denver, and Sandy Hook. Those shootings, like many others, are so far beyond the boundaries of acceptable behavior that insanity understandably seems the most apt descriptor. And, of course, society needs to do everything it possibly can to take violent weapons out of the hands of potentially dangerous assailants (Metzl 2011). But the certainty of diagnosis—who else but a crazy person would commit such a lethal crime?—is belied by the shifting historical and racialized nature of the discourse surrounding guns and mental illness. Beneath seemingly absolute questions of whether particular killers meet criteria for particular mental illnesses lie ever-changing categories of race, of violence, and indeed of diagnosis itself. Perhaps more important, the focus on mentally ill crime effaces narratives that, by default or by design, fall out of the collective purview. Understanding a person’s mental state is vital to understanding that person’s violent actions. But focusing so centrally on individualized psychology isolates the problem onto lone “deviants” while making it ever harder to address how mass shootings might reflect cultural as well as individual states of mind. We in the United States live in an era that has seen an unprecedented proliferation of gun crimes, and indeed of guns But in the post-1960s era, this proliferation has gone hand in hand with a narrowing of the lexicon through which American culture can, or is allowed to, talk about the problem. Ironically, the question of whether the insane should be allowed to bear arms becomes the only publicly permissible way to talk about questions of gun control. Meanwhile a host of other narratives, such as the mass psychology of needing so many guns in the first place and the anxieties created by being surrounded by them, often remain unspoken. In other words, if not closely examined, the overemphasis on insanity in gun debates risks taking the United States further away from real conversations about guns at the very moment when more cultural debate seems badly needed, whether or not these guns are allowed, regulated, or banned. As America’s reckoning with gun violence progresses, it seems imperative to recognize that connections between violence and mental illness, like connections between violence and political discourse, are nuanced and complex. Ultimately, the ways a society frames these connections reveal as much about its particular cultural psychopathologies and blind spots as it does about the acts of lone, and obviously troubled, individuals.

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REFERENCES

Appelbaum, P. S., and J. W. Swanson. 2010. “Gun Laws and Mental Illness: How Sensible Are the Current Restrictions?” Psychiatric Services 61 (7): 652–54. “Are You Likely to Be a Happily Married Woman?” 1949. Ladies’ Home Journal, March 31. Bleuler E. (1911) 1950. Dementia Praecox, or the Group of Schizophrenias. Translated by Joseph Zinkin. New York: International Universities Press. Originally published as Dementia praecox oder die Gruppe der Schizophrenien, in Handbuch der Psychiatrie, edited by Gustav Aschaffenburg (Leipzig and Vienna, 1911–28). Brekke, J. S., C. Prindle, S. W. Bae, and J. D. Long. 2001. “Risks for Individuals with Schizophrenia Who Are Living in the Community.” Psychiatric Services 52 (10): 1358–66. Bromberg, Walter, and Frank Simon. 1968. “The ‘Protest’ Psychosis: A Special Type of Reactive Psychosis.” Archives of General Psychiatry 19:155–60. Carmichael, Stokely. 2005. Ready for Revolution: The Life and Struggles of Stokely Carmichael (Kwame Ture). New York: Scribner. Carson, Clayborne. 1981. In Struggle: SNCC and the Black Awakening of the 1960s. Cambridge, MA: Harvard University Press. CDC (Centers for Disease Control and Prevention). 2013. “Leading Causes of Death Reports, National and Regional, 1999–2010.” http://webappa.cdc.gov/sasweb/ncipc/leadcaus10_ us.html. Accessed July 23, 2014. CSAMPA (Committee on Statistics of the American Medico-Psychological Association). 1918. Statistical Manual for the Use of Institutions for the Insane. New York: American MedicoPsychological Association. Coulter, Ann. 2013. “Guns Don’t Kill People, the Mentally Ill Do.” anncoulter.com, January 16. www.anncoulter.com/columns/2013–01–16.html. Accessed November 1, 2013. Delahanty, J. 2001. “Differences in Rates of Depression in Schizophrenia by Race.” Schizophrenia Bulletin 152 (1): 29–38. Diagnostic and Statistical Manual of Mental Disorders. 1968. 2nd ed. Washington: APA Press. Follman, Mark. 2012. “Mass Shootings: Maybe What We Need Is a Better Mental-Health Policy.” Mothjerjones.com, November 9. www.motherjones.com/politics/2012/11/jaredloughner-mass-shootings-mental-illness. Accessed November 1, 2013. Friedman, Richard A. 2012. “In Gun Debate, a Misguided Focus on Mental Illness.” New York Times, December 18, D5. Haldol. 1974. Advertisement. Archives of General Psychiatry 31 (5): 732–33. “Insanity Ascribed to Some Authors: Psychiatrists Are Told of ‘Literary Artists’ Who Evidence Schizophrenia: Grandiloquence Is Sign.” 1935. New York Times, May 15, 23. “Insanity: Mental Illness among Negroes Exceeds Whites, Overcrowds Already-Jammed ‘Snake Pits.’ ” 1949. Ebony, April, 19–23. Kliff, Sarah. 2012. “The NRA Wants an ‘Active’ Mental Illness Database.” Washington Post (blog), December 21. www.washingtonpost.com/blogs/wonkblog/wp/2012/12/21/thenra-wants-an-active-mental-illness-database-thirty-eight-states-have-that-now. Accessed November 1, 2013. Lewis, John. 1998. Walking with the Wind: A Memoir of the Movement. New York: Simon & Schuster.

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Mental Disorders: Diagnostic and Statistical Manual. 1952. Washington: APA Press. Metzl, Jonathan M. 2010. The Protest Psychosis: How Schizophrenia Became a Black Disease. Boston: Beacon. ———. 2011. “Should the Mentally Ill Bear Arms?: Mental Illness Stigma in the Aftermath of Tucson.” Lancet 377: 2172–73. Nestor, P. G. 2002. “Mental Disorder and Violence: Personality Dimensions and Clinical Features.” American Journal of Psychiatry 159:1973–78. Noyes, Arthur P. 1927. A Textbook of Psychiatry. New York: Macmillan. Obadele, Imari Abubakari. 1975. Foundations of the Black Nation. Detroit: House of Songay. Phelan, Jo C., Bruce G. Link, Ann Stueve, and Bernice A. Pescosolido. 2000. “Public Conceptions of Mental Illness in 1950 and 1996: What Is Mental Illness and Is It to Be Feared?” Journal of Health and Social Behavior 41 (2): 188–207. Pickert, Kate, and John Cloud. 2011. “If You Think Someone Is Mentally Ill: Loughner’s Six Warning Signs.” Time.com, January 11. http://content.time.com/time/nation/article /0,8599,2041733,00.html. Accessed November 1, 2013. Pierce, C. M., and L. J. West. 1966. “Six Years of Sit-Ins: Psychodynamic Causes and Effects.” International Journal of Social Psychiatry 12 (1): 29–34. Portland (ME) Press Herald. 2013. “Deadly Force: Police and the Mentally Ill.” http://www .pressherald.com/special/Maine_police_deadly_force_series_Day_1.html. Accessed November 1, 2013. Porter, Roy. 2002. Madness: A Brief History. Oxford: Oxford University Press. Raskin, A., T. H. Crook, and K. D. Herman. 1970. “Psychiatric History and Symptom Differences in Black and White Patients.” Journal of Consulting & Clinical Psychology 431:73–80. Rotenberg, L. A., and Robert L. Sadoff. 1968. “Who Should Have a Gun? Some Preliminary Psychiatric Thoughts.” American Journal of Psychiatry 125 (6): 841–43. RWJF (Robert Wood Johnson Foundation). 2012. “Preventing Gun Violence: How Laws Can Help.” http://www.rwjf.org/en/blogs/new-public-health/2012/12/preventing_gun_viole .html. Accessed November 1, 2013. Serpasil. 1955. Advertisement. American Journal of Psychiatry 112 (5): xi. Steinberg, Paul. 2012. “Our Failed Approach to Schizophrenia.” New York Times, December 26, A25. Swanson, J. W. 2011. “ Explaining Rare Acts of Violence: The Limits of Evidence from Population Research.” Psychiatric Services 62, no. 11 (November): 1369–71. Turndorf, Jamie. 2012. “Was Adam Lanza an Undiagnosed Schizophrenic?” Psychology Today (blog), December 20. http://www.psychologytoday.com/blog/we-can-work-it-out/201212 /was-adam-lanza-undiagnosed-schizophrenic. Accessed November 1, 2013. Vitols, M. M., H. G. Waters, and M. H. Keeler. 1963. “Hallucinations and Delusions in White and Negro Schizophrenics.” American Journal of Psychiatry 120:472–76. WNYC. 2012. “Mental Health and the Aurora Shooting.” Brian Lehror Show, July 31. http:// www.wnyc.org/story/226661-mental-health-and-aurora-colorado-shooting. Accessed November 1, 2013.

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11 THE WEALTH OF POPULATIONS Poverty and HIV/AIDS in Rural Central China

Shao Jing

In this chapter, I will examine the disastrous irony that confronts us when populations, especially populations in poverty, become valued as economic resources. Rather than accepting “poverty,” variously measured or proclaimed, as a source of vulnerability, I argue, we need to interrogate regimes of population custodianship that demonstrate a fierce rationality that serves to legitimize political power in the name of “fighting poverty.” Productivity, styled as the lifeline for household farming and local industry and largerscale policies, is itself implicated in massive deaths among the most vulnerable. This is the story of how rural Chinese villages approached and absorbed such death. A massive HIV infection of uncounted numbers of people in rural central China sets the stage for this reflection. As I elaborate below, in the early 2000s, many rural villages of Henan Province experienced a devastating HIV epidemic. However, at the time of infection and as the infection was spreading, villagers had no knowledge of the disease that in the absence of appropriate treatment would eventually claim their lives. Only several years later, when many villagers in their prime died after falling severely ill or not responding to any available medical treatment, did others in the village begin to realize that they would soon follow suit. Eventually their suspicions became a crushing reality when they found out that what they shared with the departed was a deadly virus that had silently entered their blood when they donated blood to commercial plasma collectors.1 What struck me most powerfully when I first began field research on this epidemic early in the 2000s was the absence of the gloom I had expected to encounter in these rural communities where so many people were living in the midst of constant reminders

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of death. Instead, I found defiant exertions of dwindling vitality, heightened solidarity among the inflicted, and a stubborn refusal to accept the finality of death in the tireless search for a cure. For example, in many cases this defiance was often demonstrated by their heightened attention to finding a partner or starting a family after the death of their HIV-positive spouse. Within the villages, living was permeated by this intensity of affects around death and dying. At the same time, a thick wall of fear surrounded the villages, manifesting itself concretely in the lack of official acknowledgment and possibility for diagnosis and treatment. A few years and many deaths later, most survivors started the antiviral-drug treatment that the state provided. The certainty of death was replaced by uncertainties over making a living, raising young children, and providing for them. Yet many still looked back with fond memories upon the “bad old days,” as they sometimes referred to those times. These impressions and experiences that I had early in my field research were hardly “cultural” in themselves. They were personal emotions and individual actions that one might find in many similar zones of death and social death. For a cultural analysis, I argue, we need to examine the social and political forces that brought about the abandonment that the villagers experienced so profoundly. Not only did their lives and deaths cease to count; they themselves also became objects of avoidance and concealment.2 At least in this Chinese story, we are confronted with a political culture tenacious in that it has survived upheavals of many radical ideological shifts in recent history, and powerful in that it has reconsolidated the social or structural arrangements for its perpetuation. It is also a political culture that is becoming increasingly self-conscious as “culture,” and often expresses itself strenuously as deriving from and hence justified by the uniqueness of Chinese social and historical conditions. Consequently, in our cultural analysis of the epidemic that has brought out numerous individual calamities, we should scrutinize critically the same operations of political power that are now widely regarded with admiration or envy as having also created the stunning economic success in China.

P O P U L AT I O N S A N D N U M B E R S

I first began ethnographic work in Henan Province in the fall of 2002. The previous year, while teaching anthropology at a small liberal-arts college in the United States, I had read an article in the New York Times that reported on the massive HIV infection and alarming number of deaths from AIDS in some rural villages in that province. Through selling their blood plasma to plasma collectors, villagers had become infected with HIV. The majority of these commercial donors came from rural areas, places that later came to be called “AIDS villages.”3 My journey began in Beijing, where a friend introduced me to two writers originally from Henan, hoping that they would provide contacts for my research. They had both heard about the “AIDS villages” but had little knowledge beyond an awareness that the government—particularly the Henan provincial government—was keeping the existence

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of these villages and their whereabouts a secret. They arranged for me to ask for help from an associate of theirs who was the head of the Writer’s Association of Nanyang, a prefecture of Henan. They also advised me to keep mum on exactly what I was looking for on that trip. After being introduced to officials as a cultural anthropologist interested in studying the rural health-care system in a township two hours’ drive from the city of Nanyang, I stayed in the government building for several days as a guest of the township Communist Party chief. There, I spent most of my time visiting primary schools in the villages under the township’s jurisdiction. I was assigned a companion, a young official from the township’s education office, who never let me out of his sight. In our time together, he recommended many other cultural sites he thought appropriate, such as remnants of old temples and monuments, which I dutifully visited. It became clear that I was not to meet with a single villager struck down by AIDS on this trip because nobody I talked to would dare give me any useful leads with the official always present with me. Furthermore, I would have little chance of hearing of the experiences of those already infected with HIV—even if they were standing right in front of me—because most of those infected had not yet been checked and diagnosed. They themselves would not have known of their infection. The trip was far from fruitless, however. I was struck by the odd demography of the schools I visited. They all seemed to have the same anomaly in enrollments: two or more loaded years of forty to fifty students followed by one lean year with only about twenty. The explanation that my companion gave was perfectly plausible: the fat years came from when the township relaxed its enforcement of the nation’s population policy. I then had the opportunity to witness how a lean year could be made. The township government threw a banquet one afternoon for a gang of some three dozen strong-bodied men, some in police uniforms. I was invited to join the conviviality. During the meal, I heard mention of “a task” the men were to “execute” at midnight. Yet I could neither discern exactly what the nature of the banquet was nor figure out what the “task” might be. The next morning, I was woken up by both a loud commotion outside the tightly closed gate to the courtyard on the side of the government building and the wailing and cursing of the many women locked inside the courtyard. I asked a nearby shopkeeper about the commotion and wailing. He replied that the women had been rounded up the night before for out-of-quota pregnancies. Their pregnancies would have to be terminated so that the township government could fulfill its enforcement requirements. Another story surfaced: the fat years had more than handsomely funded these very raids through fines that the township government collected on the numerous out-of-quota pregnancies that had been carried to term. These fines had already become a vital source of revenue for bloated township bureaucracies in many parts of rural China.4 What I was allowed to see on that trip has important implications for understanding the HIV/AIDS epidemic in a great many of the rural areas in Henan and to a lesser extent in a few other provinces in central China. In what follows, I will discuss these implications

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in addition to providing an ethnography of the social, political, and economic forces that have shaped the particular epidemiological profile of this local outbreak as it figures within and sheds light upon the global epidemic.

T H E W E A LT H O F P O P U L AT I O N S

The official shroud of secrecy did little to hamper my eventual access to many devastated “AIDS villages” in other parts of Henan. In this, I was initially helped by a few journalists, who risked their jobs by tenaciously following the hidden epidemic. Many of the HIVinfected villagers I encountered early in my research expressed a kind of remorse for having brought the disease onto themselves, yet I noted how this expression was given almost as an afterthought: “Had I known that I could get this horrible dirty disease, I would never have sold blood!”5 They had participated actively in the economy of plasma collection and fractionation as paid suppliers of the raw material, or what in the industry is referred to as “source plasma.” They were, in fact, aware of the health risks they took when they obtained multiple donor IDs and traveled from one location to another so that they could sell far more frequently than allowed by the official standards. Many of them even knew that they had already been infected with hepatitis B and C, and they sought to evade routine screenings in order to keep selling.6 But none could have envisioned the finality and the complete certainty of painful death from a disease without any cure as a result of their own calculated risk taking.7 This last perspective is where the individual donors diverge from the impersonal views and calculations of the plasma-fraction industry, the health-care sector, and the government—a confluence of interests on the opposite side of this business bargain. For these latter interests, what might be final and complete for one individual becomes a calculable probability within a population and thus worthy of the name “risk.” For example, an established chronic infection of hepatitis B or C may or may not lead to terminal liver diseases, cirrhosis, or cancer, and ultimately death, and therefore can be seen as a risk by the individual donor. But the fact that infection with hepatitis C, which had been noted to be rising sharply in China among plasma donors, presents a much higher likelihood of ending in terminal liver diseases than hepatitis B was never communicated forcibly to enthusiastic donors. They thought of hepatitis C as a variant of the more familiar hepatitis B already endemic in China. Indeed, I heard many seasoned former donors jokingly mention the medical abbreviation of HCV; it was as if it were rendered perfectly harmless since it sounded exactly like the Chinese pronunciation of the word for “crackers” (binggan). When in April 1996 the government acted, upon clear evidence that the HIV epidemic had already spread to the millions of plasma donors in Henan and its neighboring provinces, to shut down all plasma-collection stations in the country, it was evidently trying to contain a major HIV outbreak. However, there was no mention of HIV in the official pronouncements prohibiting plasma collection. The unexplained crackdown

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served only to drive many of the existing plasma operations underground, leading to greater numbers of HIV infections among those unaware that the virus had already infected fellow donors. It would be futile to speculate here on the political motivations for the government’s decision not to make public the risk of contracting HIV from unsanitary plasma donation. But from the institution’s point of view, the certain existence of those who had already been infected, or those who might be at risk, would have been a matter of population control and management, a mere matter of statistics. Further supporting this point is the fact that no large-scale epidemiological survey was conducted to ascertain the scope of the HIV epidemic in the large population of rural commercial plasma donors until well after its existence was made impossible to hide following the sudden increase of deaths in the “AIDS villages.” What the Ministry of Health did do following the ban in 1996 was conduct a comprehensive overhaul of the industry by restructuring and relicensing plasma-collecting operations. The ministry moved these operations out of Henan and its immediate neighboring areas to other provinces with large, impoverished rural populations as replacement sources of “source plasma.” The sudden disappearance of a viable source of cash income from plasma donation in Henan, however, led a good number of the former plasma donors to sell whole blood at hospitals. Within the province, this shift resulted in large numbers of hospital patients with transfusion-related HIV infections after the ban was put in place. Rural poverty alone cannot serve as a predictor of a population’s vulnerability to HIV. It is when rural poverty becomes an explicit target of intervention, a reason for development projects, as happened in Henan, that it might create conditions in which such vulnerability comes into being. Indeed, Henan became the center of this disastrous human economy as a result of the deliberate efforts on the part of the provincial government to tackle what it perceived as the primary obstacle to the province’s economic development: a large rural population “surfeit” (Anagnost 1995) with its economic value diminished by the scarcity of available productive agricultural land. It does not take a tremendous leap of imagination to convert this nonperforming “surfeit” into a selfreplenishing fund of valued raw material for a value-adding industry. While harvesting plasma in Henan for fractionation facilities both in the province and in other locations was a commercial endeavor from the very beginning, initial mobilization campaigns to recruit donors—as many HIV-infected villagers I talked to remembered clearly—had deliberately blurred the distinction between voluntary blood donation and giving plasma for cash by calling the latter also an act of selfless “glory.” The villagers were also told that since they were not giving any blood cells but only the liquid part of their blood, which could be easily replaced by the body, they would not suffer any harmful consequences of frequent donation. Instead, they would provide themselves the opportunity to achieve another kind of “glory”, à la Deng Xiaoping’s exhortation, of lifting themselves out of poverty, even “getting rich.”8 What we are examining here, however, does not result simply from China’s embracing of neoliberalism (Harvey 2007), which became more pronounced during the reform

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era under Deng Xiaoping. We must also consider how aspects of the radical regimes of population management under Mao’s state socialism in China were animated in this economy of blood and blood products. A key piece of this legacy is the notorious, castelike “hukou” system of household registration, which assigns a permanent “rural” or “urban” status to every individual, not by residence, but by birth. Along with the assignment, a “hukou” status is the entitlement or the lack thereof of social services and opportunities such as education, health care, and employment.9 Calls for the abolishment of this system of discrimination have intensified in recent years but have been met with strong political resistance. No legislative change by China’s National People’s Congress is anywhere in sight. Such resistance reveals the system’s resilient versatility in serving purposes of wildly different social and political agendas. Created and perfected in the first three decades of the People’s Republic’s existence (1949–78) to fund the nation’s industrialization ambitions with value extracted from the agricultural sector, the “hukou” primarily and effectively prevented rural-to-urban population movement throughout the nation. The system functioned to keep the majority of people with rural status from entitlements and services reserved for the far less numerous urban people. At the same time, it allowed the planned procurement of grains and foodstuffs from a largely subsistence agriculture barely capable of providing for the rural population itself. The exploitative extractions of agricultural value from the rural population, however, were largely kept hidden within the mechanism of the so-called price scissors that economics planners used to suppress the prices of agricultural products and inflate those of industrial products. Also kept hidden were the disastrous consequences of the often zealous application of the “scissors.” The large numbers of deaths of rural people during periods of severe food shortage in the socialist era have never been officially acknowledged and largely remain a taboo subject (see Yang 2012). Such refusal to accept responsibility for population mismanagement, I argue, goes beyond loyalty to specific political ideologies. Instead, it is testimony to the undiminished strength of regimes of political power that continue to treat and manage populations (and people) as economic resources. Many epidemiological analyses we have seen in the aftermath of the outbreak of HIV infections among commercial plasma donors have listed uncritically their “rural” status as the most statistically significant determinant for their HIV infection status (Wu, Rou, and Cui 2004). But suggesting, as these analyses do, a quasi-statistical inevitability only serves to undermine our appreciation of the deliberate and calculated economy of populations that created the conditions necessary for the outbreak to take hold in the first place.

A CONFLUENCE OF INTERESTS: WHEN BLOOD FLOWS LIKE MONEY

We can now identify a number of forces that contributed to the feverish thriving of the fractionation industry in China early in the 1990s, which in turn allowed the stunningly

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efficient transmission of HIV among the industry’s suppliers of the raw material crucial for its growth. Perhaps most decisive were the restrictions that the Ministry of Health placed upon the importation of blood products from “capitalist countries” where “homosexuality and intravenous drug use” had become “serious social problems.”10 These restrictions were explicitly prompted by what the ministry saw as the urgent need to keep the HIV epidemic outside of China’s borders. At the same time, the ministry also vowed to expand China’s own industry rapidly, by as much as tenfold, measured by the total amount of human serum albumin that it would be capable of supplying annually. In the midst of the reform-era restructuring of China’s revenue-consuming healthcare system into a self-supporting and even profitable service industry, the appearance of a conflict of interest was the least of the ministry’s concerns. A large number of new fractionation companies were licensed. Many of these companies were spinoffs created by staff members of the six major regional institutes of biological products. In the socialist era, the ministry had set up these institutes primarily to supply vaccines for the national public-health programs. In the early stages of the industry’s development, commercial collection of source plasma was performed by local public-health facilities, such as county-level disease-control stations, health centers for women and children, primaryhealth-care clinics and hospitals operated by large state enterprises and the military. From a business point of view, the ministry was certainly doing an admirable job of providing economic opportunities for public-health facilities that were far less competitive than the major urban hospitals in attracting patients and turning a profit. The financially robust hospitals themselves, as it turns out, also benefited tremendously from the increased supply of plasma-derived blood products. Chief among those products was albumin, generously prescribed as a “life-saving drug” (jiuming yao) for critical-care or terminally ill patients as part of the growing trend of heroic medicine, as well as for a great diversity of many other clinical conditions. Following the boom of the fractionation industry, albumin has been topping the list of the most-prescribed medicines in terms of cash value in many of these hospitals, which until recently have relied on drug prescriptions and diagnostic procedures for their revenue rather than charging for services that physicians provide.11 In the early 1940s, the need to obtain human albumin originally prompted the technical development of industrial-scale plasmapheresis and fractionation in the United States as part of war medicine. Albumin was found to have many advantages over whole blood in procurement, storage, and transportation. By allowing the quick expansion of blood volume, it was an effective agent in reducing deaths of wounded combat soldiers from shock due to blood loss. Subsequent additions of other curative proteins, such as coagulating factors, which can be obtained from the same collected stock of plasma, have expanded the profits for the industry. Albumin, being the most abundant of plasma proteins, has remained an important source of revenue because it has been aggressively marketed as a superior, though much more costly, option for treating shock and a few other indications not only in combat but also in the peacetime hospital setting.

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In the mid-1990s, however, right about the time when the fractionation industry in China reached its peak in terms of sheer tonnage of plasma collected and fractionated, the costly use of albumin in hospitals in the United States and Europe came under increased scrutiny. In 1995, the University Hospitals Consortium (UHC) in the United States published guidelines that aimed at limiting the indications for albumin use (Vermeulen et al. 1995). In 1998, Cochrane Injuries Group (CIG) published a systematic review that concluded that, in comparison with the much cheaper saline solution, albumin administered in critical care could result in a greater number of deaths (Cochrane Injuries Group 1998). Clearly, the industry and the medical profession are motivated by opposite concerns over cost and benefit in the debates over the clinical justification for albumin, which has become more and more a by-product of plasma fractionation. In the last several years, a number of studies on hospital consumption of albumin in China have also been published in Chinese medical journals. These studies have been conducted in the context of periodic shortfalls in the supply of albumin. Such shortfalls have triggered highly publicized panic among many hospital patients and their families and even the appearance of counterfeit albumin on the black market. By and large, the flurry of industry analysts’ opinions blamed the stringent Ministry of Health–imposed safety standards on plasma collection and processing after the HIV epidemic in Henan, as well as the harsh price setting it has also imposed on both source plasma and fractionated-blood products. The hospital surveys and analyses, however, presented quite a different explanation. One study, for example, demonstrated that only 18 percent of all albumin use in a major hospital was prescribed for the indications specified by the manufacturers. Measured against the University Hospitals Consortium guidelines, the fit dropped to 12 percent (Zhai, Fu, and Wang 2008). A persistent inflation of demand, rather than a decline in supply, would have to be the real cause of the scarcity of albumin. The far more numerous nonindicated and even counter-indicated prescriptions have accounted for the bulk of albumin consumption in hospitals in China. In this strange economy of life and death, the price elasticity of a lifesaving drug with a very limited scope of application somehow disappeared when its potency became widely generalized by concerted efforts on the part of its manufacturers, the medical profession, and inevitably the consumers themselves. The high cost of albumin then becomes reified as a reliable indicator of its reputed efficacy. This “efficacy” in turn serves to expand the scope of clinical indications, which has crucially guaranteed the high cost and hence the profit of the product.12 We need to point out here, however, that albumin is by no means the only drug that derives its perceived efficacy in part from its cash value. As we have seen in the case of albumin, there is a blurring of the distinction between commodity and cash in terms of their specific utilities. This blurring is also evident in the ambiguity of the status of source plasma, with its central place in the maintenance of the health of the Chinese fractionation industry and in light of the setbacks source plasma suffered after the HIV outbreak among its rural suppliers.13 In reviewing industry analyses, I have observed a kind of recurrent poignant reference to the “volume

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expansion” (kuorong) role that source plasma plays in keeping the starved fractionation businesses afloat in their competition for official approval for setting up and operating plasma-collection facilities (see, for example, Wei 2005). In other words, the value of the capital that the industry raised and invested in building fractionation plants can be realized only if it is matched by a sufficient supply of source plasma to keep them operating at full capacity. Such a supply to the industry is expressed, in metaphorical terms, as what an infusion of albumin itself would do to the body in a state of shock. Yet the callousness that we detect in the “death” of this physiology-derived metaphor, as the metaphorical slips into the literal, points to the virtual monetization of human plasma, complete in its calm literalness. The monetization of plasma for those rural donors on the supply side, however, demands a different analysis. Many accounts I have seen on the plasma economy in rural central China, while completely sympathetic to the plight of HIV-infected donors, have dwelled upon an image of these donors as ever ready to extend their arm to the needle in return for a sum of quick cash in the years of feverish plasma collection. It is as if the forces for donation could be simply explained away by an unsavory horror at the careless speed of the money rush. In one account, however, the donor was reported to have carefully earmarked the cash he would receive from each of his arms for different kinds of fertilizers that he would have to purchase for his crops that year. Indeed, an often-overlooked circumstance that allowed the plasma economy to emerge was the demand for cash input for factors of production, including seeds, fertilizers, pesticides, fuel, and electricity. Since the decollectivization of the agricultural sectors that marked the beginning of Deng Xiaoping’s reform era late in 1978, these costs have been absorbed by household-based farming in China. The margin of profit for such household farming was small and highly undependable to begin with because of the necessary cash input, the small size of the household land allocation, and changes in weather conditions from year to year. It was further squeezed by the heavy burden of a host of taxes and fees that many levels of local governments were allowed to collect, in addition to the steep punitive fines for out-of-quota children noted earlier. Post-Mao economic liberalization was promoted to give the agricultural producers the incentive to work for themselves, so as to liberate the productivity of the land stifled under socialist collectivism. But the increased burdens they came to bear had forced them to turn to what their bodies could produce as sources of capital in order to inject these sources not only into the cycles of agricultural production, but also into the reproduction of themselves. In the calculations that these producers had to perform, the value of their labor was often not included, since it was eclipsed more and more by the more tangible value of cash. Only in light of this analysis can we comprehend the villagers’ atrophied aversion to the risks of their endeavors. They braved damage to their health as a result of excessively frequent donations, as well as the risk of contracting blood-borne diseases that did not present death with the same stark certainty as HIV did.

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The much-hated head of the provincial health bureau of Henan Province chiefly responsible for promoting plasma collection in his province has never had to face the grave consequences of his irresponsibility, as demanded by the victims and also loudly by their advocates. Perhaps we should recognize the stroke of genius in doing what he did. Outstepping his responsibility for the health of the people in his province, he had found a way to bring cash to his rural constituents without their having to sell their labor in China’s coastal zones of manufacturing. Not only was this maneuver intended to keep agriculture, the mainstay of his province’s economy, viable, in that it defied the severe limitations of the population-to-land ratio; it also allowed agricultural producers to become profitable farmers of their own bodies.14 Many advocates for justice for the victims of this plasma economy have cited cases of other countries in which officials are punished for their negligence early in an epidemic, a negligence that results in large-scale HIV infections of recipients of blood and blood products. They also point to the large compensations that many victims have been legally awarded in these countries, and they lament the delay and insolence of justice in China in the face of a scandal many times the cost in human lives compared with those in other countries. But the precise number of lives of rural donors cut short or altered as a result of this HIV epidemic shaped by the economy and politics of post-Mao reform-era China has remained unavailable.

THE POLITICS IN NUMBERS

Efforts over the years to track, conceal, or expose the HIV epidemic among rural commercial plasma donors in China by people with diverse political persuasions, agendas, and interests have yielded bewildering crops of contradicting numbers and estimates. I have always found it impossible to agree with any of them, and I have refused to add to the confusion with my own estimates. Close encounters with the lives, and sometimes deaths, of many individual people in my field research have also made me averse to the perspective as well as distance that discoursing in large numbers would impose. I also want to insist that my aversion is neither entirely personal nor of a purely disciplinary origin, but rather is necessary for an account of the political culture without the analysis itself being absorbed into the perspective of that same culture. In this exercise, it is illuminating to look at a few of the numbers concerned with the scope of the epidemic that have come from different sources. In 2001, an alarming report by the United Nations Theme Group on HIV/AIDS in China included two estimates on the number of HIV infections resulting from commercial plasma collection (UN Theme Group on HIV/AIDS in China 2001). The figure supplied by the Ministry of Health was 150,000, whereas the other, much higher figure advanced by the well-known and controversial activist Dr. Gao Yaojie was above one million. The Chinese government refused to endorse the estimates, projections, and conclusions in this report, although much of the data in it came from Chinese sources. The application that the Chinese government

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submitted to the Global Fund in 2003, however, claimed that among the 1.5 million commercial plasma donors, 250,000 could have already been infected (CCM China 2003). This figure is much higher than what was originally provided in the Ministry of Health’s estimate that appeared in the UN group’s report (Ministry of Health 2003). The application also noted that these were low estimates that did not include many possible unreported cases. If political discourse often has to rely upon numbers for its power of persuasion, powerful politics seems to have the capacity to create a reality to which numbers must conform. Large figures that seemed to be casually rounded to the nearest ten thousand appeared only in these documents, numbers that eclipsed those they represented. These figures hardly related to the individual sufferings I encountered on the ground. One year later, the government of Henan released the results of what it called a “dragnet” survey with the aim of officially ascertaining the exact scope of the plasma-collectionrelated HIV epidemic with 100 percent coverage (“Henan lawang pucha aizhibing renshu” 2004). Yet again, the figures were rounded to the nearest thousand: 25,000 people infected out of a total population of 280,000 former plasma donors. While the province had supplied by far the largest tonnage of plasma collected until April 1996, the survey figures accounted for only one-tenth of the cases of HIV infection nationwide officially projected in the previous year. Such inconsistencies have rendered the numbers themselves highly suspect, either of deliberate inflation or of deliberate deflation, which in turn can reveal the political interests at stake when these statistical operations were performed differently by the national and local bureaucracies.15 Such statistical creativity in these demonstrations of the power of politics has led to a profusion of speculations on the “true” reality of the epidemic. In addition to Dr. Gao Yaojie’s insistence that at least one million have been infected in this “bloody disaster” (xuehuo), mentioned above, Dr. Zhang Ke, for example, a Beijing-based infectious disease specialist as well as a vocal advocate for the Henan victims, came up with different estimates, based on five years of providing treatment and care for the infected in the province and the informal surveys he himself conducted on the side. In a long unpublished report he wrote in 2004, he concluded that the number of people infected in Henan Province should be between 170,000 and 470,000, and mostly likely around 300,000 (K. Zhang 2004). But what exact political impact can these unofficial figures have if they are competing for attention and validity with official ones that have been created with the same type of rhetorical force, inspiring the same cynical disbelief? The issue we should address then becomes how such figures of HIV prevalence, or likewise other statistical indicators of wealth and poverty as well as of the health and malaise of populations and regions, can and do serve national and local political purposes by creating regional zones for administratively managed development. Here we are dealing with a political culture with “Chinese characteristics.” But the implications of our examination go beyond the local, since these Chinese characteristics are now widely admired and envied for bringing about a spectacular economic success in a world broadly plagued by economic gloom.

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CONCLUSION

These Chinese, or perhaps not-so-Chinese, characteristics have persisted through socialism, market economy, planned regional developments, and most recently the resurgence of large state-run corporations. Such characteristics are indeed symptomatic of the powerful political management of populations as economic resources in China. The barriers of segregation politically erected between populations defined as either “rural” or “urban,” as well as by their regional belonging to various levels of local government, have created conditions in which their movement or stability, growth or decline, wealth or poverty, can be systematically controlled. In this context, poverty per se can no longer help us understand the profile of an epidemic clearly corresponding to the economic conditions of the afflicted demographic, because poverty was mobilized as an alibi for the economic “harvesting” of that population. Indeed, the local governments of many regions blessed with the hard-earned official designation of being poverty-stricken and hence in need of capital investment from the outside sometimes fight to keep that designation. Poverty, or rather a population in poverty, can indeed become a valued property when economy and politics merge. In this scenario, matters of life and death are also matters of the political economy of populations. On a more tangible level, even though the value of the uniquely Chinese measures of population control have increasingly become a topic of debate in what has been referred to as the alarming disappearance of the “demographic dividend,” this control is still in place: one still has to pay the fines and bribe officials if the uncontrolled birth of a child is to be counted officially in the system of “hukou” registration. N OT E S

1. Blood cells are removed from whole blood and reinfused to the plasma donor. This opens the transmission route to blood-borne infections such as malaria, hepatitis B and C, and HIV. 2. A recent study published in a Chinese medical journal, for example, concludes that HIV-related deaths in a rural area in Henan do not have any statistically significant impact on the overall life expectancy of the population in the area (M. Wang et al. 2011). 3. I have reported aspects of this research in other publications: in Shao 2006 and Shao and Scoggin 2009. See also Erwin 2006. 4. When China was hit by the SARS epidemic in the spring of 2003, it was the network of the population-control agencies, well funded and functioning, that was mobilized to delegate and execute the necessary public-health response, which consisted of detecting, reporting, and quarantining people suspected of the infection, and effectively reducing movements of the already high number of the nation’s mobile populations. 5. A persistent mispronunciation of “aizibing” (“AIDS”) as “aisibing” (“love-death-disease”) was often heard among villages and sometimes among the orphaned children during my field trips. 6. For epidemiological data on hepatitis B and C infections among Chinese commercial plasma donors, see Qian et al. 2005 and F. Zhang et al. 2012.

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7. The point here is that the scandalous visibility of HIV-related deaths should not divert our attention away from the pattern of exploitation and deliberate neglect that allowed the HIV epidemic to establish itself quickly and effectively among the rural plasma donors. Prior to the outbreak of HIV infection among plasma donors, there were already a significant number of studies published in Chinese medical and public-health journals on the sharp rise of blood-borne diseases associated with plasma collection, such as hepatitis C and malaria (see, for example, S. Wang et al. 1994; S. Chen et al. 1994; and S. Chen et al. 2010). 8. According to Dr. Liu Xiuxiang, the senior research at the Beijing Institute of Biological Products, who promoted plasmapheresis as well as helped develop its technical procedures and standards early in the 1980s, the method has an advantage over whole-blood donation because it “makes possible the collection of large quantities of plasma from small numbers of donors” (Liu and Youchu 1989, 4). 9. Thus, a migrant worker with the “rural” status is referred to as a “peasant worker” (nongmin gong) although he or she has never worked on the land but lived for the most part in an urban area, working manufacturing, construction, retail, or service jobs. A change from a “rural” to an “urban” status is granted only to those who find white-collar jobs through higher education, military service, or employment in the government. 10. The 1984 Ministry of Health administrative decision also detailed that China was at the time importing twelve million dollars’ worth of blood products annually, including human serum albumin, immune globulins, coagulating factors, and fibrinogen, from such countries as Germany, Australia, France, the United States, and Spain. In the same year the domestic industry, still largely confined to the six major institutes of biological products directly controlled by the ministry, was able to produce only 1.2 tons of albumin, which fell far short of the growing demand in China (see Ministry of Health 1984). 11. Recently, attempts on reforming the health-care sectors have included the gradual separation of pharmacies from hospitals to curtail the conflict of interest that has led to skyrocketing costs for consumers. 12. In my recent field research on leprosy in the Nuoso minority region in Southwest China, I encountered a similar situation in which the drug Dapsone (diamino diphenal sulphone) was widely sought after by patients suffering from a wide array of ailments but most certainly not leprosy. If the drug could treat the most feared of all diseases in the region, they reasoned, it also had to be effective in treating any lesser conditions. In this case, however, the perceived potency attributed to the drug was in part created by its being no longer available on the market but incorporated into the government-supplied multidrug therapy for leprosy administered strictly through disease-control agencies. 13. The point that nonmonetary objects often have the potential of becoming money—that is, being monetized and therefore used as a means of exchange—is beautifully brought out in Guyer 2004. 14. Any personal gains from being the head of an arm of the government that would regulate such a “farming” enterprise, gigantic given the size of the rural population in the province, would then be completely within the realm of justifiable incentives. 15. This, of course, is not uniquely a Chinese phenomenon by any means. See, for example, Boseley 2007.

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REFERENCES

Anagnost, Ann. 1995. “A Surfeit of Bodies: Population and the Rationality of the State in Post-Mao China.” In Conceiving the New World Order: The Global Politics of Reproduction, edited by Faye D. Ginsburg and Rayna Rapp, 22–41. Berkeley: University of California Press. Boseley, Sarah. 2007. “UN Lowers Estimate of Worldwide HIV/Aids Cases by 6m.” Guardian, November 21. Accessed February 4, 2013. www.guardian.co.uk/world/2007/nov/21/aids .society. CCM China. 2003. “Zhongguo di sanlun quanqiu jijing xianmu shenqingshu gaiyao” [A summary of China’s third-round application for Global Fund projects by Country Coordinating Mechanism China]. Accessed May 12, 2012. http://wenku.baidu.com/view/e22b8940 be1e650e52ea992f.html. Chen, Suliang, Zhikun Zhang, Yong Zhao, et al. 1994. “An Epidemiological Study on Malaria Infection in Plasmapheresis Donors.” Chinese Journal of Disease Control and Prevention 8 (6): 350–52. Chen, Suliang, Hongru Zhao, Degui Sun, et al. 2010. “Study on the Origin of HIV Outbreak among Plasmapheresis Donors in Hebei Province.” Chinese Journal of Disease Control and Prevention 14 (9): 848–51. Cochrane Injuries Group. 1998. “Human Albumin Administration in Critically Ill Patients: Systematic Review of Randomised Controlled Trials—Why Albumin May Not Work.” British Medical Journal 317 (7153): 235–40. Erwin, Kathleen. 2006. “The Circulatory System: Blood Procurement, AIDS, and the Social Body in China.” Medical Anthropology Quarterly 20 (2): 139–59. Guyer, Jane I. 2004. Marginal Gains: Monetary Transactions in Atlantic Africa. Chicago: University of Chicago Press. Harvey, David. 2007. A Brief History of Neoliberalism. Oxford: Oxford University Press. “Henan lawang pucha aizhibing renshu” [Henan conducts dragnet survey to ascertain AIDS cases]. 2004. Beijing qingnian bao [Beijing youth news], September 11. Accessed February 4, 2013. http://news.xinhuanet.com/health/2004–09/11/content_1968508.htm. Liu, Junxiang, and Ji Youchu. 1989. Dancai xuejiang shu shouche [Plasmaphereisis handbook]. Beijing: Remin Weishen Chubanshe [People’s Health Publisher]. Ministry of Health. 1984. “Weisheng bu, duiwai jingji maoyi bu, haiguan zhongshu guanyu xianshi jingkou xuezhibing fangzhi AIDS chuanru woguo de lianghe tongzhi” [Joint circular by the Ministry of Health, the Ministry of Foreign Economy and Trade, and the General Administration of Customs on restricting imported blood products in order to prevent the spread of AIDS into our country]. Accessed May 13, 2012. http://www.people .com.cn/item/flfgk/gwyfg/1984/407106198404.html. Qian, Han-Zhu, Zhongmin Yang, Xiaoming Shi, Jianhua Guo, Cuiling Xu, Lan Wang, Kai Zhou, et al. 2005. “Hepatitis C Virus Infection in Former Commercial Plasma/Blood Donors in Rural Shanxi Province, China: The China Integrated Programs for Research on AIDS.” Journal of Infectious Diseases 192 (10): 1694–1700. Shao, Jing. 2006. “Fluid Labor and Blood Money: The Economy of HIV/AIDS in Rural Central China.” Cultural Anthropology 21 (4): 535–69.

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Shao, Jing, and Mary Scoggin. 2009. “Solidarity and Distinction in Blood: Contamination, Morality and Variability.” Body Society 15 (2): 29–49. UN Theme Group on HIV/AIDS in China. 2001. “HIV/AIDS, China’s Titanic Peril: 2001 Update of the AIDS Situation and Needs Assessment Report.” Accessed April 2, 2011. http:// www.hivpolicy.org/Library/HPP000056.pdf. Vermeulen, L. C., T. A. Ratko, B. L. Erstad, M. E. Brecher, and K. A. Matuszewski. 1995. “A Paradigm for Consensus: The University Hospital Consortium Guidelines for the Use of Albumin, Nonprotein Colloid, and Crystalloid Solutions.” Archives of Internal Medicine 155 (4): 373–79. Wang, Meng, Shuhuang Wu, Zhe Wang, and Jianbin Yu. 2011. “Influence of AIDS Mortality on Life Expectancy in a Township Abounds with Former Paid Blood Donors in 2005 in Henan Province.” Modern Preventative Medicine 38 (24): 5216–17. Wang, Shuping, Hong Ding, Hongqi Zhang, et al. 1994. “Hepatitis C Virus Infection among the Plasmapheresis Donors.” Chinese Journal of Epidemiology 15 (2): 71–73. Wei, Shaofeng. 2005. “Xuezhipin: You qunxiong fenzheng jinru guatou longduan” [Blood products: From competition to monopoly]. Yiyao jing ji bao [Economic news in pharmaceutics], May 27. www.yyjjb.com.cn/articledetail05. asp?id = 17. Wu, Zunyou, Keming Rou, and Haixia Cui. 2004. “The HIV/AIDS Epidemic in China: History, Current Strategies and Future Challenges.” In AIDS Education and Prevention: Official Publication of the International Society for AIDS Education 16 (3), supp. A: 7–17. New York: Guilford Press. Yang, Jisheng. 2012. Tombstone: The Great Chinese Famine 1958–1962. Translated from Chinese by Stacy Mosher and Guo Jian. New York: Farrar, Straus and Giroux. Zhai, Lijie, Xiujuan Fu, and Zhuowei Wang. 2008. “Cong woyuan renxue baidanbai de linchuang yingyong fengxi qi jinque de yuanyin” [The shortage of human albumin resulted from analysis of prescriptions in the hospital]. Zhongguo yaoshi [Chinese pharmaceutical affairs] 22 (5): 431–34. Zhang, Fujie, Shuntai Zhou, Xi Chen, et al. 2012. “Seroprevalence of HBV and HCV among HIV-Infected Adults in China according to Route of HIV Infection: High Rate of HBV and HCV Exposure.” Future Virology 7 (10): 1015–20. Zhang, Ke. 2004. “Henan aizhibing wunian diaocha baogao” [A report on AIDS in Henan based on five years of investigations]. Accessed January 2, 2013. http://www.usc.cuhk.edu .hk/PaperCollection/Details.aspx?id=4955.

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12 LIVING AND DYING WITH MYCOBACTERIA Tuberculosis and the Regulation of Anti-tuberculous Drugs in Nepal

Ian Harper and Nabin Rawal

With the advent of streptomycin—first used in 1943—the management and treatment of tuberculosis was transformed from being sanatoria based to the taking of pharmaceuticals. From this initial discovery and marketing, there followed a period of experimentation involving the use of a range of potential TB drugs. Para-aminosalicylic acid (PAS) was first used in 1948, and isoniazid and pyrazinamide first became available for use in the market in 1952. The introduction of rifampicin, in 1967, allowed for the first fully oral treatments. Currently, five compounds are designated as “first-line drugs” and used for the treatment of non-drug-resistant tuberculosis. There is a wider spectrum of socalled second-line drugs that are used in various combinations for the treatment of drugresistant tuberculosis (MDR-TB).1 Unfortunately, the so-called short-course regimens— developed after rifampicin entered the market after the late 1960s—still require that treatment be continued for at least six months. In this chapter we look at the availability of anti-TB drugs in the context of Nepal. We ask the following questions: What is the range of drugs available and used for the treatment of tuberculosis? From which companies are they available, and what market forces drive this availability? What has been the impact of the government-and-state-run program on this availability, if any? And what are the implications for the control of the disease? We examine how the regimen used in the national program was unrolled, adapted, and changed, and the reactions to this program from private physicians. We reflect on the perceptions of those working in the pharmaceutical industry as to the effect of the national program on market sales. Our goal is to understand the market and other forces driving the sales of TB drugs.2

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The chapter is divided into a number of sections. First, as a point of departure, we provide some ethnographic snippets of a visit to a TB clinic in the western region of Nepal. This provides the backdrop for the section outlining the history of attempts at introducing the WHO-sanctioned TB program Direct Observation of Treatment, ShortCourse (DOTS) in the context of Nepal, focusing in particular on the drug regimens that were introduced with this national program. We reproduce some of the reactions of private practitioners to this program, and the drugs used. The following section looks at Nepal’s failed attempts to produce its own rifampicin, from both the state-run company Nepal Drugs and from private pharmaceutical companies—both of which were destined to fail as the national program moved toward international procurement through the WHO and its Global Drug Facility because of concerns with the quality of the products. We then look at how the private market for TB drugs has shifted to products procured and imported from large Indian multinational companies, and to the availability of drugs in combined forms. This, combined with the success of the DOTS program in Nepal, has resulted in the availability of fewer company products in the market—a positive development from the perspective of attempts to prevent the rise of drug resistance. Finally, we return to a snippet of ethnography at one of the TB clinics from which drug-resistant tuberculosis is being treated. That the government-procured drugs had expired here points to the difficulty of managing second-line drugs.

A V I S I T T O T H E W E S T E R N R E G I O N A L H O S P I TA L

The DOTS clinic in the regional hospital in Butwal took some finding. It is tucked away out of sight and mind behind the hospital itself. On the walls outside, with their peeling paint, are posters of the importance of taking the DOTS treatment. The room itself was well organized, and the clinic seemingly well run. On the walls of the clinic were several charts of last year’s figures: 217 category-one patients; 87 category-two; 54 category-three. A list of the various DOTS subcenters within the city was displayed—a mix of state and NGO-run/privately run institutions: Paropkar Sewa Kendra; the Family Planning Association; Butwal DOTS Centre; Rotary Club of BTL “South”; the Ayurvedic Hospital; Maya Devi Nursing College. Another large hand-drawn poster showed the quarterly case finding rates: a pie chart represented the TB patient classification on the basis of treatment category; TB patient classification on the basis of age and sex were represented; quarterly treatment outcomes were displayed. On the table the relevant registers were all neatly aligned, with the strips of tablets being used for that day placed in boxes. Behind on a concrete tabletop coming out of the wall were the notes for patients, each with photographs attached and aligned in compartments by category of treatment: a total of 225 then on treatment in the city. It was very different from the large public-hospital DOTS center in Kathmandu that we had visited earlier, which was disordered, unkempt, and uninviting. The young man responsible for running this clinic had been in charge of the DOTS program for the last eight months, and he obviously took great pride in his job. He

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explained that the DOTS clinic itself had been opened eight years earlier. He is a lab assistant, and also works as a volunteer for the Red Cross. He explained that the clinic was in negotiations to start treating MDR TB patients as well, and that the WHO TB adviser had recently been on a trip to discuss this. However, he felt that the current hospital superintendent was not particularly enthusiastic. The National Tuberculosis Program (NTP) was at the time expanding the number of centers through which it treats drug-resistant tuberculosis, as had been recommended by a number of recent program reviews. As we talk, a patient comes in who is in the process of being referred out to a DOTS center nearer his home. He is advised to stay at his sasural (in-laws) and to bring in his children in for a checkup. After the patient leaves, we talk about the supply of drugs to the clinic, which come from the Bhairawa District Public Health Office via the National Tuberculosis Center, based in Sano Thimi, in Kathmandu. They have no supply problems with TB drugs, we are informed (which is not the case with other essential drugs, as the first author had discovered on a visit to another district center near Kathmandu the previous year; despite recommendations to the contrary, the TB program had maintained tight control of the ordering and distribution of TB drugs for the national program). The drugs are all stacked neatly on metal shelves in their boxes, some still with the airlines stickers attached. Several have Thai airlines stickers on them—“dep. Bombay, destination Kathmandu”—via (we imagine) Bangkok. He explained that he keeps the ones about to expire near the front, using them first and stacking the newer boxes behind them. We move on to discuss the problems he has with his work, and he says that he has no problems with the DOTS policy itself. The problem, he says, is that the patients tend to take the medicines for only three months and then stop. It is a particular problem with “villagers,” he adds. He also complains that the building he is in is a bit old and needs to be better maintained. There is no place for “counseling.” His predecessor used to counsel patients through the bars on the window, but he has changed that and wants to be friendlier, so he has recently been inviting them inside as he talks to them. This is better, he thinks. He asked us what we thought, and we agreed. A young man comes in for his father’s tablets, is given them, and heads off. Another man gets referred back to the health post near his home, and it is explained to him that he has kira (insects) in his lungs and that he has TB. He doesn’t need any more tests, the young man in charge explains, but has to take the full course of medicines. Two others arrive: a young man and his mother. The mother has TB. The young man’s father had TB as well. The mother needs to take the daily medicines, her son is told, for the full eight months, and she needs to stop smoking. After two to three months she will feel better, but it is very important that she takes the medicines for the remainder of the eight months. It is an infectious disease, and she should cover her mouth while coughing, and not put young children in front of her. The phone rings, the “hello moto” tone rebounds through the clinic, and the young man in charge answers it. The caller asks about which foods someone with TB can eat and is transferred to the nearest health post. The young

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man turns to us and explains that it is not necessary to have referral letters within the district, but only when someone is referred to another clinic. He goes on to explain that there are some problems with several of the doctors in the hospital, who ignore the DOTS program and treat their patients privately. He has been to see the doctors, and they say that the national regimen is no good. They tell him they are concerned with the quality of the drugs. (“I was born in Butwal. Do you think I would give poor-quality drugs to people here?” is his reply.) They ask why they should dispense poor-quality medicines when they have their own medicines. He thinks their resistance is probably business related and has to do with their profits, and with the fact that they own private clinics or have shares in private clinics. Some patients come here after two months or so and then are very surprised that the medications are free. We then ask about stigma, he suggests that this is certainly the case for those with MDR TB. He mentions “patient 41,” who had been treated for MDR but had defaulted because he could not afford to stay in Pokhara for the whole two years. His family had thrown him out of the house after he got back. At this point the phone rings, and he says to the caller, “Don’t be afraid, you can come here. There are no patients,” . . . and we laugh about the stigma. Outside, we spoke to TP, a thirty-five-year-old man, who was wearing a mask covering his mouth and nose. He was wearing shorts and a blue jacket; a Nepali “topi” adorned his head. He hailed from Myagdi District and was currently working in one of the hotels in the Butwal bus park. He stated that he had gone to Kathmandu during Jestha 2064 (May-June 2007) to fly to Dubai, but before leaving, he had needed to take a medical test. When the manpower company x-rayed his chest, a white mark was found on the image, and they gave him four capsules to take for four days, saying that the capsules would clear the white blot in his lungs. After four days, TP again had his chest x-rayed, but the white mark was still there. He was sent to the Alka Nursing Home in the Jawalakhel area of Kathmandu—one of the many, and proliferating, private treatment facilities to be found in the capital city. The doctors there checked his sputum and wrote a report stating that he had TB. He came back to the DOTS center in Butwal, where they again checked his sputum, told him that there was no evidence of TB, and sent him back. After about two months he went back to Kathmandu, since his working visa had arrived from Dubai. A routine medical test was repeated, and his chest X-ray again revealed a white blot. This time he was sent to Kalimati Clinic (run by the NGO GENETUP). After his sputum was checked, the clinic staff wrote a letter to the DOTS center in Butwal saying that he had TB. TP again returned to the DOTS center in Butwal and showed them the clinic’s report. He started to take TB drugs in August 2007. His sputum was checked again two months later, and the result was positive. In November he was put under category-two treatment. He said that the doctors had told him that “aba bigryo bhane [if it fails now],” and that if the medicine did not work this time around he would have to stay in the hospital in Kathmandu and take the medicines for twentyfour months. Commenting on the drugs he was taking now, he told us that he used to

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take six drugs and now he has to take eight. He contended that he was taking drugs regularly for the first two months and added, “Khai khana bigrera hola ki Dasaima [Perhaps it may be due to the food and drinks I took in Dasai].” But TP also added that he had completely stopped drinking alcohol in October. He said that the person in charge at the DOTS clinic treated him very well, and further added, “He counsels us in a very reassuring manner.”

TB CONTROL IN NEPAL AND TB DRUG PROCUREMENT

The DOTS clinic in Butwal—part of the program into which TP was referred as one of an estimated forty thousand patients who develop the disease annually in Nepal—and the drugs to which TP had access were not always at hand. Historically, a sanatorium established at Tokha, in the northern part of the Kathmandu, was the state’s first attempt at managing tuberculosis in the 1930s. At the Central Chest Clinic, established in 1951, the first tentative attempts at diagnosis and treatment were made, with the first systematic endeavor at organizing the TB control program beginning in 1965 (with an agreement signed with the WHO and UNICEF).3 Despite this, the implementation of TB control measures remained sporadic and underresourced. There were a number of international NGOs and other medically oriented nongovernmental organizations—all poorly centrally coordinated—that were working in various parts of the country. Attempts at greater coordination among these organizations, and with the NTP, followed the declaration by the WHO of tuberculosis as a global emergency in 1993, as the available resources and political will increased substantially. Within the NTP’s own representation of milestones of the TB program, the first milestone begins only in 1996, with “DOTS implementation” (Tuberculosis Control Programme Nepal, 2010). As soon as DOTS was announced as the WHO-proposed global strategy to deal with the “global emergency,” Nepal took steps toward its adoption. This strategy emphasizes case-finding activities using smear microscopy of those suspected of having TB, and then the administration of a short course of therapy under the “direct observation” of those responsible to the health system. The DOTS policy, when it was initially introduced, included five core elements: a political commitment to increasing resources for the fight against TB as an activity integral to national health systems; sputum microscopy services so that the disease could be correctly identified; short-course chemotherapy, including the direct observation of treatment; uninterrupted supply of drugs; and, finally, recording and reporting systems (Hamlet and Baral 2002). After this directive to follow the DOTS strategy, by the year 2001 over thirty-one thousand TB patients were registered and being treated under the NTP. By mid-2001 the DOTS strategy had been rolled out to 227 treatment centers, with 684 subcenters, covering 84% of the total population across all seventy-five districts in the country. Treatment success rates of 85% or greater were reported (Hamlet and Baral 2002). We have elsewhere written critically of how the categories of entry into the program have almost

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certainly painted a better picture than what is actually the case, and next to nothing is known about the private sector within the NTPs own representations (Harper 2005, 2006). Nonetheless, by the 2009–10 annual report, the NTP was able to state that by mid-2010 a total of 4,220 health institutions were offering DOTS provision, with treatment cure rates of those registered at a staggering 90% (NTC 2011). In relation to the drugs, in the context of Nepal, the short-course regimen chosen for the DOTS program—which was a shift from the “standard” regimen used before—was divided into three different categories.4 Category one: two months of isoniazid (H), rifampicin (R), ethambutol (E), pyrazinamide (Z), followed by two months of isoniazid (H) and ethambutol (2HRZE/6HE). Category two included the addition of streptomycin (S) to the initial phase, followed by one month of HRZE, then five months of HRE (2SHRZE/1HRZE/5HRE). Category three: two months of HRZ and six months of HE (2HRZ/6HE). Category one is intended for those with smear-positive disease and serious patients; category two, for treatment “failures,” “relapse,” and treatment after “default”; category three, for less serious, noninfectious disease. This eight-month regimen—for categories one and three, and administered daily—lacked rifampicin in the continuation phase (CP). This was changed in late 2008, as this research was finishing, to HR in the CP. This technical decision on regimen choice was made by a small groups of national and international experts, in part because of widespread criticisms of the initial choice of not having the drug rifampicin in the CP. This initial choice of regimen hindered the acceptance of the DOTS program.

P R I VAT E P R A C T I T I O N E R S ’ C R I T I C I S M S O F THE DOTS PROGRAM AND ITS DRUG REGIMEN

Despite its self-reported success—in Nepal there was widespread criticism of the choice of regimen that the national program had initially decided upon when it rolled out the DOTS program. In particular, the continuation-phase drugs concerned the private physicians we interviewed (quite different from the scenario in India, where the national program had introduced an intermittent regimen—that is, three times a week—and was criticized for this reason). A senior well-known TB specialist in Kathmandu explained that he used a six-month regimen, because he preferred the CP with rifampicin in it. For this reason, he said, he referred only those who could not afford it into the DOTS program. He was concerned with the “slightly higher” relapse rates when the CP contained ethambutol instead of rifampicin. He had talked the issue of rifampicin in the CP over with many of his colleagues and stated that they shared his concern. Another senior Kathmandu chest physician stated that he was somewhat suspicious of the cure rates claimed by the DOTS program. He also gave rifampicin to all his patients throughout the full regimen, and because he was responsible for the treatment of army personnel with tuberculosis, he had not adopted the Nepal DOTS regimen. He saw the DOTS regimen in Nepal as an inferior regimen, and was surprised that the patients themselves were not

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shouting for better. He was unable to accept that they were having 90% cure rates with the ethambutol-based regimens, he explained. He also said that he treated patients privately because many have difficulties and “hassles” going to the DOTS clinic every day, and taking time off work can be expensive. Outside Kathmandu, the concerns were the same. A senior physician in Lumbini, in the Western Region, also complained that the category-one regimen was not good, and that he did not like HE in the regimen at all. Since the HE combination was “bacteristatic,” he explained, they should have HR in the continuation phase because it is “bactericidal.” As he said, “From my experience, by giving HE in the continuation phase there is a high chance of relapse.” So he did not refer patients to the DOTS program, but instead prescribed the HR regimen. He also had a problem with the quality of the government drugs, and with the lack of accountability in the DOTS system: “One person does the checkup, another person does the test, and then another person gives the medicine, so no one cares.” A well-known and popular doctor among Tibetan refugees, based in Kathmandu, had similar issues with the DOTS program. The advantage, he said, is that “it is free, and we know if the patients take the treatment to completion, so this is good.” “Functionality” was the drawback in his opinion. There are many patients with no fixed abode or location, and they have no proper address. There is a lack of manpower to track people down who don’t turn up for their treatment. People work, and they don’t have time to attend the clinics. As a consequence, they drop out, and the default rate is high. In his experience, the relapse rate is also higher than it is for the conventional regime because the treatment is too short. Another doctor, who had his own private clinic as well as working in the NTP, pointed out that currently it costs only sixteen rupees per day to buy treatment from the private sector. Many patients—50%—would rather buy medicines than go daily to the DOTS clinic. They would rather take them at home; and stigma is a problem as well, because they don’t want to be seen in the clinic. (“Thulo Gharko Manche lai, TB lagnu hudaina [A person from a family of good social standing should not get TB].”) The problem was, he said, that if you refuse to allow them treatment in the private sector, they can always just go somewhere else, even in the same hospital. Many of the private physicians then had issues with the DOTS program, both with the regimen itself and with the restrictions that it placed on their patients. Disentangling these criticisms from the broader cynicism toward private doctors that we encountered in those working in the DOTS system is difficult (it’s all about not losing the income), but nonetheless the choice of regimen had an effect on perceptions of the quality of treatment provision. We turn next to the issue of the production of rifampicin in Nepal from the late 1990s, as Nepal adopted the DOTS regimen and tried to catch up with the increased demand for the drug. We shall also see the impact of this development as concern with both quality and drug resistance increased.

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N E P A L’ S AT T E M P T S T O P R O D U C E T B D R U G S

There had been an attempt to produce TB drugs in Nepal in the early 1990s, as the country was beginning to strengthen its TB program. Focusing on rifampicin, one of our key drugs in the research, attempts to produce or package the drug in Nepal for the TB program had started with Nepal Drugs (or Royal Drugs Nepal, as it was known before the royal family was overthrown and the country became a republic). It started with support from the Japan International Cooperation Agency (JICA), which, prior to the advent of the Global Fund against AIDS, Tuberculosis and Malaria (GFATM), was one of the major funders and supporters of the TB program. This was before Nepal acquired its drugs for the national program through the WHO program, via the international Global Drugs Facility (GDF)—a mechanism that the first WHO TB adviser to Nepal was instrumental in setting up in 2001, after he left and went to Geneva. As this adviser suggested in an e-mail interview, this production of rifampicin was an attempt to introduce shortcourse chemotherapy into the NTP, which until then had been using the standard regimen. The Japan Pharmaceutical Manufacturers Association (JPMA) had suggested that they shift from supplying the capsules to providing technical assistance so that Royal Drugs Nepal could produce their own. With the demand for rifampicin exceeding supply, the NTP also started procuring the drug from other international suppliers at this time. In addition, a WHO official we interviewed told us, “Nepal wanted to move toward using Fixed Dose Combinations (FDCs) in line with international recommendations, but JPMAdonated rifampicin was not allowed to be combined, and Royal Drugs Nepal did not have the capacity to make FDCs anyway. With support from the Norwegian Heart and Lung Foundation (LHL) and later from the British Department for International Development (DFID), there was a move to international competitive bidding for TB drugs.” The WHO official we interviewed felt that it was the rise of FDCs and the shift to international procurement that caused this attempt to flounder. An employee of Royal Drugs at the time agreed with this assessment: “Due to new inventions on TB drug, a combined form of drugs was developed by Indian companies and multinational companies, and this was supported by WHO and other donors. In my opinion, this is the main cause for not continuing rifampicin production in Nepal. . . . As the WHO and donor organizations decided to buy combined form into one single capsule, we could not produce such sophisticated types of medicine.” This attempt by Nepal at packaging its own rifampicin also became embroiled in political fallout when an editorial published in the Lancet suggested that this availability of uncombined rifampicin could create conditions that would lead to the rise of resistance (Fryatt 1995). The editorial was published at the same time that the NTP was about to move toward DOTS and direct observation of therapy, but the move was still in its nascent phase. The minister for health at the time, whom we interviewed around the event, was still angry at the publication of the editorial, and felt that this was an irresponsible act. Although the JPMA had wanted to support the production of combined tablets,

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they were bound by Japanese patent laws, so they could not recombine the tablets as the minister of health suggested. There were accusations and counteraccusations, and the JPMA became tired of it all and left Nepal. While Nepal Drugs became weakened—state subsidies to the national company were stopped, for example—and unable to compete during Nepal’s rapid period of neoliberalization, attempts at packaging rifampicin by private Nepalese companies fared little better. Nepal’s own pharmaceutical industry was started in the 1970s with the opening of Royal Drugs Nepal and had till this time been totally dominated by the Indian industry. By 2010, there were forty-five national companies engaged in formulation production only (that is, the raw materials are imported, and packaged in Nepal), and these companies had managed to capture over 30% of the market back from India (Harper, Rawal, and Subedi 2011). Those company representatives whom we interviewed about rifampicin production mentioned that the DOTS program had resulted in decreased sales, but also that they could not compete with the Indian companies, particularly Lupin Pharmaceuticals. For example, the product manager of Nepal Pharmaceuticals Laboratory, one of Nepal’s largest pharmaceutical companies, explained that they had tried to get into the TB market fifteen years or so ago but had not been successful. They abandoned it after two or three years. They saw the government procurement of drugs as their potential main target, but the risk was too great—what if the government were not to buy their product?—and anyway Lupin had started to develop “kits” or strips, the success of which would mean they couldn’t compete. In addition, the administration manager of CTL Pharmaceuticals told us that CTL had also stopped their production of rifampicin in 2004. Their sales had been decreasing, and, he added, “the National Tuberculosis Centre started getting rifampicin for free, from donor countries, so we stopped its production.” Thus although Nepal was attempting to wean itself off its dependence on India for the production of generic drugs within its own borders, in relation to TB drugs Nepal was having little to no success and had become dependent on the products of a few key Indian companies. Since the advent of Global Fund funding, the procurement of the national program purchase order is done through the WHO through the GDF. Because the WHO does not have to comply with national procurement regulations—procurement has to be done through international competitive bidding—and would have to base its award on lowest cost, this has been the main mechanism for bringing in the highquality products supplied by the GDF. The prequalified suppliers to the GDF include a number of Indian companies, including Lupin, but this was really the nail in the coffin of Nepal’s own nascent attempts to manufacture and package its own TB drugs.

T H E P R I VAT E M A R K E T F O R T B D R U G S I N N E P A L

There have been significant shifts in the availability of anti-TB medicines in Nepal since the introduction of the DOTS program. The market is now totally dominated by a few

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products made by Indian companies—in turn dominated by the company Lupin. And these are products of a certain kind—in particular, combinations of drugs in strips and as combined tablets.5 As part of our research we visited all the pharmacy retail outlets outside a number of the largest public hospitals in Kathmandu and in the western region (Butwal and Pokhara, in particular) from which DOTS clinics were also being run. All of these hospitals have large numbers of pharmacy retail outlets clustered in the streets outside their gates. Outside the Bir Hospital in Kathmandu, for example, five of these retailers stocked TB medications. All had Lupin’s products, and several had Macleods’, with Cadila’s products also represented for first-line drugs. One shop also had rifampicin from a single company, Concept Pharmaceuticals. The shops in combination stocked drugs for MDR treatment as well.6 All these retailers told us how their sales of TB drugs had decreased since the introduction of the DOTS program, one saying that sales were down 99% and another that “far more [was] sold in the past.” They also used to sell single drugs more, but with the emergence of AKT4 in particular—Lupin’s four-dose strip packet—this had all changed recently. As one senior pediatrician in one of Kathmandu’s new medical colleges explained to us, obtaining uncombined rifampicin was a particular problem for him, as this product was just not available in the market in the capital city. Outside the valley, in the city of Butwal, where the regional hospital is located, we found a similar pattern of drug availability. We counted at least thirty-four private pharmacy retail outlets around the hospital and asked staff at several of the shops which TB drugs they stocked. Again Lupin, Macleods, and Concept products dominated, although there were no second-line drugs except for a range of brands of ofloxacin.7 Thus this pattern of products, and the decrease in sales we were to see repeated everywhere we visited. Outside two of the new medical colleges in Kathmandu we visited, and outside one in Pokhara that we also visited—all of which ran seemingly successful and busy DOTS clinics—we found no sales of TB drugs in the private marketplace. Outside another hospital that housed a DOTS clinic, the pharmacist stocked Lupin products so that he could tide over those patients who came for their drugs when the DOTS clinic was shut. (It was open only between 10 a.m. and 2 p.m.) As he explained, and as we were to hear repeatedly, this was for the convenience of those patients who preferred to pay for the drugs rather than wait for the clinic to open; they could then work, and collect the drugs at their convenience.

C O M PA N Y P E R S P E C T I V E S A N D P R O D U C T S A L E S

Thus the market for TB drugs has shifted, and in direct consequence of two major factors: first, the running of the DOTS program, and second, the increased availability of combined TB drugs and those in “strips,” both types supplied by Indian companies. Those few companies that still maintained a hold in the Nepal marketplace for TB drugs talked of differing strategies for keeping their products competitive. For example, Concept

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Pharmaceuticals had a range of products that added vitamin B6. As one of their medical representatives explained: “We have Rifa-i-6, which is a combination of rifampicin, isoniazid, and vitamin B6. This product is available for people weighing up to fifty kilograms. Other companies usually do not have vitamin combinations, but we have vitamin combinations. Likewise, we have Rifacept-3, which is a combination of rifampicin, pyrazinamide, isoniazid, and vitamin B6. We also have Rifacept Kid.” As Concept’s field manager also suggested in the interview, this gave them an advantage over the other companies’ products, since the combination with B6 prevented side effects like peripheral neuropathy. Nonetheless, he stated that their sales were down, in relation to Lupin in particular. Sales, the regional manager told us, had gone down about 90% after the introduction of DOTS. A medical representative for Lupin explained how they kept their place in the market. As we were sitting drinking tea in one of Kathmandu’s largest and most profitable private hospitals, he opened his case and brought out his flip book for tuberculosis and Lupin’s related products. As he talked to us, he worked his way through the text, as he would with a possible client. Rifampicin, he explained, is bactericidal. It is one of the four main drugs for tuberculosis, he said, along with isoniazid, pyrazinamide, and ethambutol. (He then added streptomycin as a fifth.) He told us how they had introduced their four-drug combinations in the 1980s. In the five years that he had been working in Kathmandu he had not seen any change in sales, with Lupin shifting 200 boxes per month of AKT-4 in Kathmandu alone (each box contains forty days’ worth of strips). He was critical of the DOTS program, saying that it had resulted in an increase in drug resistance, and as a consequence, DOTS-Plus (the more complex drug regimens and management strategies used for MDR-TB treatment) had to be started as well. He explained that there are many patients who arrive from outside the valley and stay for a few days, but then stop taking the drugs and leave. He indicated that the cost of AKT-4 was only sixteen Nepali rupees per day, and the continuation phase only seven rupees per day. He pointed out that the cost of transportation for the patients to get to the DOTS clinic can be more than this, including lost earnings. In addition, pointing to how they align themselves in the marketplace, he said that taking all four drugs at the same time was not recommended and that the rifampicin should be taken before breakfast. AKT-4 comes in a “combi-pack,” and so each tablet is separately packed and can be removed separately; this packaging prevents hydroscopic degeneration of ethambutol and oxidation of rifampicin. He went on to mention that the Macleods preparation has the four drugs together and that this is not good because the bioavailability of the rifampicin is reduced. Nonetheless, as this interview concluded it became apparent that he was happy with the dominance of Lupin in the TB market in Nepal and was eager to promote the sales of other products, leaving Lupin’s reputation to do much of the marketing work. (In our interviews with chest physicians, they nearly all mentioned that the Lupin product range was good and reliable and that the company was trustworthy.)8 Macleods had launched their products in Nepal in 2002. They entered the Nepal market after Lupin, and had failed to compete with them as they would have liked. As

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one of their medical representatives explained, their sales had taken a beating with the success of the DOTS program: Our pharmaceutical marketing is doctor oriented. We visit doctors and promote our products, and we need to convince them. And once doctors are convinced and such patients come to them, the doctors prescribe the products, the prescription goes to the retailers, and the retailer demand those products from us. But for TB, doctors do not prescribe TB drugs because the government has published the notice that they should send those patients for DOTS. They get free drugs, why should they buy them? And some patients cannot afford it because of their economic condition. Generally, doctors prefer sending TB patients for DOTS rather than to retailers’ shops. Some patients who want to hide their disease, or who have high social status, go to private consultants and buy these TB drugs from retailers. But there are very few like them.

The company had introduced second-line drugs as well, but already their sales were decreasing after the NTP introduced its nationwide attempt at treating MDR patients through the national system. As he explained: “Before the launching of DOTS-Plus, the sales were high. After its launch, the sales really decreased. At that time, no one else has distributed their drugs and we had no competitor, and patients were bound to buy it for cure. Everyone wants to live longer. After the launch, we do not have sales. They are distributing it for free.” Yet to maintain their share in the market, Macleods made sure that certain other forms of interaction with doctors still took place. One medical representative explained how they incentivized the chest physicians who used their anti-tuberculosis products: Yes, we also fund conferences and provide air tickets and accommodation to the doctors when they go to attend workshops and conferences in India, but these are for doctors who prescribe our products. We give them gifts according to the prescriptions issued by them per month or per annum. . . . Every year Dr. X “demands” to be given a book that is not available here, but apart from that we also give him bags and other “small gifts.” . . . We have a sort of “contract” with Dr. Y. Just a few days ago I handed him a check for five thousand rupees, and sometimes the check amount may be up to twenty thousand rupees. In fact Dr. Y was asking for twenty thousand rupees a few days ago. . . . Apart from that we also give him other “small gifts” like bags.

In our previous work we have looked at these patterns of incentivization in the Nepal pharmaceutical sector, and at how the state attempted, and failed, to regulate these marketing practices through the production of a set of ethical guidelines (Harper, Rawal, and Subedi 2011). Here we point out that this is one of the methods that pharmaceutical companies use to maintain their presence in the market with certain key prescribers. In the final section we turn to the issue of MDR-TB and its treatment.

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D R U G R E S I S TA N C E A N D T H E S E C O N D - L I N E D R U G S

The rise of drug resistance in Nepal has been (mercifully) slow, in comparison to many other countries—South Africa and the former Soviet Union, for example—but the available figures are difficult to interpret in terms of trends. According to the 2010–15 national strategic plan for Nepal, new cases of MDR-TB in Nepal have oscillated from 1.1% (of all those diagnosed with TB) in 1996–97, to 3.7% in 1998–99, to 1.3% in 2001–2, and up to 2.9% in 2006–7. The rate is higher among retreatment cases, with an estimate of 11.7% (Tuberculosis Control Programme Nepal, 2010). The national Nepal MDR-TB treatments started in 2005 as the DOTS program expanded into the broader STOP TB program, and with WHO Green Light Committee (GLC) approval, which meant that the program was given the green light to treat 350 MDR-TB patients over a two-year period. After two international reviews—the WHO maintains a tight control over who is allowed to roll out MDR treatments—the GLC gave permission for a further 1,200 MDR-TB patients over the course of four years. A grant from UNITAID was secured to fund this program. Nepal thus became the first country in the world to develop a countrywide MDR strategy. By 2010 there were twelve treatment centers for MDR (with fifty-four subcenters) across the country and 910 patients registered for treatment (NTC 2011). The regimen was decided as follows: an intensive phase (eight to twelve months) consisting of kanamycin (KM), pyrazinamide (Z), ofloxacin (Ofx), ethionamide (Eto), and cycloserine (Cs); and a continuation phase (sixteen to twenty months) of pyrazinamide (Z), ofloxacin (Ofx), ethionamide (Eto), and cycloserine (Cs). By 2008, 494 MDR TB cases were registered for this treatment, with an initial cure rate of 70% (for the eightyeight patients who completed treatment) (Tuberculosis Control Programme Nepal, 2010). In November 2007 we visited a DOTS clinic in one of the capital’s main public hospitals, where MDR treatments were dispensed. Compared with the Butwal clinic described earlier, this clinic was far less tidy. Near the window on the counter, eight boxes were piled up haphazardly. Each had a label on it that read “Humanitarian Donation from the WHO,” with an International Dispensary Association (IDA) label on it. The donations had been procured through the GDF for the DOTS-Plus program, and had been delivered through Thai Airways. On the table was a referral form, two disposable syringes, a register, and a small notebook to jot down the names of the patients who came to take the medicines each day. Two calendars were hung on the wall—one from Everest Pharmaceuticals, and the other from Deurali-Janta Pharmaceuticals. The counter near the window had pockets where DOTS medicines could be stored: ethambutol 400mg/isoniazid 150 (Cadila), rifampicin 150mg/isoniazid 75 (Svizera), pyrazinamide 400 (Cadila), ethambutol 400 (Svizera), RIFA-CTL 150 (CTL)—this had expired earlier in the year but had not been disposed of. All had been procured through the GDF. A small box contained drugs for MDR treatment: ofloxacin 200 mg (Microlabs),

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pyridoxine (B6) (Macleods), ethionamide 200 (Macleods), pyrazinamide 400 (Micro), kanamycin (Panpharma SA), and cycloserine 250 mg (Lily). On closer inspection, it was apparent that three of the boxes of cycloserine had already expired that month. The supervisor told us that they have particular problems with the expiry dates of cycloserine, that they were using the stock that had expired in November at present but would have to send quite a bit back to the NTC. There they try not to waste things and try to redistribute stock. He thinks this is not a problem in the Kathmandu Valley but that it certainly is a problem outside. He explained: the cycloserine has to be taken for two years, but it is currently supplied for only four months at a time. Twenty-nine patients were registered as being on MDR treatment at this clinic, and were indeed on treatment. The doctor mentioned how difficult it was for those patients to come to the clinic every day, as was currently demanded by policy. Because the Global Fund had refused to pay for incidental costs, something the NTP staff were struggling with, it was even harder for them, he explained. There is a problem for the “local community”: “Bus ma aucha, Khak, khak Khokcha, MDR jharcha [They come on the bus, they cough and spread MDR].” Given the darkness of the room (which had no window giving directly to the outside) and the absence of any measures to control infection at the clinic, this would also be a problem—although this was not mentioned by the doctor. As the brief description above shows, there are some particular problems with the MDR drugs. Although some of these drugs are available in the marketplace, particularly around the larger hospitals and when prescribed by the more well known chest physicians, we do not know how widely available they are. There are significant issues in managing the distribution of MDR-TB drugs in the public system, however. An international review of the TB program undertaken in 2007 indicated that for second-line drugs there are significant logistical issues. On a scale of one to three—“relatively easy,” “some challenges,” and “extremely difficult”—for the full range of logistical activities in procuring, storing, and distributing drugs, in all but the cold chain (the refrigeration system used to protect some drugs from perishing in the heat during transportation and storage) these drugs ranked as “extremely difficult.”9 As the report also pointed out, some of the kits provided by the GDF stored in the center had an expiry date for five months hence, and their expiry could not be avoided even if they sent out immediately. Acknowledging that this is a problem everywhere where these drugs are procured through the GDF, the review warned that these drugs are both far more expensive than first-line drugs as well as being amongst the most difficult of health products to manage.

CONCLUSIONS

Much has been written about DOTS, both positive and negative, and the policy has divided academics, policy makers, and practitioners (Ogden, Walt, and Lush 2003). On the one hand, this vertical policy—that is, one addressing a single disease rather than broader health-system strengthening—has been seen as successful within the terms of its own

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epidemiological representational parameters, and has been politically very visible. On the other, it has opened up a space for considerable criticism and debate within international health circles, ranging from ideological issues to practical criticisms on technical aspects of the policy. It certainly does little to address the broader issue of poverty and the social and economic inequalities that nurture the spread of the disease (Porter et al. 2002; Gandy and Zumla 2002). One particularly damning technical criticism is that the policy itself has facilitated the spread of MDR and XDR (extensively drug-resistant) TB—for example, in South Africa (Pillay and Sturm 2007). This is the so-called amplifier effect: the propagation of MDR-TB when the rifampicin-based short-course regimens are used in areas where the levels of MDR-TB are unknown (Gandy 2003; Farmer and Kim 1998). This concern led to the formation of the WHO-hosted Green Light Committee in 2000 to deal with the growing problem of MDR-TB. The direct-observation component, in particular, has come under sustained scrutiny, in part because it consistently fails to take into account the issues faced by patients. (See, for example, the systematic reviews of the now-voluminous research literature into this [Noyes and Popay 2007; Volmink and Garner 2007].) We have not specifically focused here on the perspective of the patients, although even from the material presented here—as those availing themselves of services slipped in and out of our ethnographic frame of observation—it is obvious that those unfortunate enough to be diagnosed with tuberculosis will be thrown into a complex “local ecology” (Das and Das 2006) in part defined by the state and markets we have described, and by much else we do not consider in this chapter. In our research we found that the views of the private physicians toward DOTS tend to favor a more patient-centered care, and should be taken seriously—despite cynicism toward possible financial motives—since they highlight inadequacies with both the regimen and the inflexibility of the system, such as having the DOTS clinics open only during midday. However, the most important finding of the research, and one we have chosen to highlight here, is one that, as far as we know, no other research into DOTS programs has addressed—namely, the impact that the DOTS program has had on local markets of TB drugs. The Department of Drug Administration is very underresourced and has failed at the regulation of marketing strategies of drug companies in the context of Nepal (Harper, Rawal, and Subedi 2011). Within this vacuum, other mechanisms have come into play. It has not been acknowledged that the success of the DOTS program in Nepal has had a significant impact on the market availability of anti-TB drugs, with retailers reporting decreased sales as a consequence. In addition, the increased availability of fixed-dose combinations and strips from reputable Indian multinational companies—in particular, Lupin—means that there are fewer uncombined medicines in the marketplace. This is a considerable public-health advance from the perspective of preventing the transmission of MDR-TB, even if it means that there is less choice for individual physicians and that Nepali companies have failed to enter into this market. At present, levels of MDR-TB in Nepal remain low, and whatever support mechanisms are available to patients and their families—we live in hope that the emergent patient-

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centered discourse from the NTP will truly translate into greater trust in patients to manage their own illnesses—the market trends of available TB drugs should mean, in Nepal, at least, that the chances of developing MDR remain low. Unfortunately, while this is true now, Nepal is not isolated from the rest of the world, and how long this will remain the case is open to question. With the current high levels of migration as Nepalis move to other parts of the world in search of work (particularly to India and the Middle East),10 they will increasingly be exposed to higher levels of MDR-TB and bring it home.

N OT E S

This chapter emerged from the collaborative research project “Tracing Pharmaceuticals in South Asia” (2006–2009) that was jointly funded by the Economic and Social Research Council and the Department for International Development (RES-167-25-0110). The project team comprised Soumita Basu, Gitanjali Priti Bhatia, Samita Bhattarai, Petra Brhlikova, Erin Court, Abhijit Das, Stefan Ecks, Ian Harper, Patricia Jeffery, Roger Jeffery, Rachel Manners, Allyson Pollock, Nabin Rawal, Liz Richardson, Santosh M. R., and Madhusudan Subedi. Martin Chautari (Kathmandu) and the Centre for Health and Social Justice (New Delhi) provided resources drawn upon in the writing of this paper. Neither the ESRC nor DfID is responsible for views advanced here. 1. The “first-line drugs” are as follows: isoniazid (H), rifampicin (R), ethambutol (E), pyrazinamide (Z), and streptomycin (S). “Second-line drugs” include kanamycin (KM); amikacin (AMK); capreomycin (CM); the quinolones (FQ)—Cipro, Ofx, Gfz, Mfx; the thiamides (ethionamide or prothionamide); cycloserine (CS); and para-aminosalicylic acid (PAS). (The abbreviations are those currently used by the WHO.) 2. In “Tracing Pharmaceuticals in South Asia” we mapped patterns of production, distribution, marketing, and retail of three key generic drugs (oxytocin, rifampicin, and fluoxetine) in three regions of South Asia (Nepal, West Bengal [WB], and Uttar Pradesh [UP]). We drew on qualitative data using semistructured interviews—in particular, with producers, medical representatives, pharmacists (including distributors and retailers), and providers (including qualified and unqualified prescribers). Topics included questions about the everyday working practices of the interviewees, with specific questions about our focus drugs—here rifampicin and other associated TB drugs. We asked about substandard and counterfeit medicines; patterns of supply; prescriptions by certified and noncertified medical practitioners; and over-thecounter sales by pharmacists. Since each of the drugs is inserted in different ways into national and international health programs, and drug-procurement procedures differ widely, we also interviewed donor agencies and health activists about how they saw the problems posed by the supply chains and the distribution and consumption patterns of each of the three drugs. Over 80 percent of the interviews were recorded, transcribed, and (where necessary) translated into English by the research assistants. In each site we also took whatever opportunities were presented to observe interactions among key members of the field—providers with clients and medical representatives, for example. All unrecorded interviews, and any observation material, were noted down (either at the time or immediately after) and typed up in as much detail as possible as soon as we were able to reach a computer. Because of the roles played by

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global donors in TB control, we made special studies of the documents on the national TB programs in India and Nepal in order to investigate linkages between international organizations and donors, and national governments and health systems, as well as how these national programs interact with the pharmaceutical commodity. 3. See http://nepalntp.gov.np/. 4. When Ian Harper first came to Nepal to work as a medical practitioner in 1990, the national regimen being used was a combination of streptomycin, thiacetazone, and isonaizid for two months, and then a further ten months of thiacetazone and isonazid (shortened to: 2SHT/10 HT). Working with the INGO the Britain Nepal Medical Trust from 1990 to 1994, he was involved in a systematic attempt to provide evidence for the introduction of Short Course Chemotherapy into the National Programme. As Sir John Crofton, who was the then chair of BNMT TB subcommittee for the trustees’ board, reported at a Wellcome Trust witness seminar on short-course chemotherapy in 2005: “Short-course chemotherapy was initiated at a stage when the relevant drugs were very expensive. Accordingly, the Britain–Nepal Medical Trust, with which I was involved, did a carefully controlled trial comparing results in two groups of remote hill districts that had previously had similar success rates using previously standard therapy. If I remember correctly, it was 87 per cent success rate with short-course chemotherapy and 61 per cent with the other, so confirming the general impression that patients seemed to have much lower defaulter rate and thus did better with the short-course chemotherapy.” By the early 1990s, when we undertook this trial, the weight of evidence and the shift to short-course chemotherapy around the globe were inexorable and inevitable. There was, however, no national recommendation as to the use of short-course chemotherapy (SCC). Resistance to this regimen in Nepal was related to cost (thiacetazone—despite some very nasty side effects, including a sometimes fatal reaction called Steven-Johnson syndrome, that Ian Harper witnessed and treated several times while working in the Eastern Hills—was very cheap), and there was a strong sense that the loss of education possibilities if patients were no longer having to receive their daily injectable streptomycin might result in higher levels of “default.” 5. See Ecks and Harper 2013 for an ethnography of Lupin, with a particular focus on its medical representatives. 6. The first shop had Lupin and Cadila products. The brand names were as follows: AKT4; R-CINEX; Combutol; and, for MDR treatment, Capriomycin (Lupin). The second shop had Concepts products as well (AKT4, AKT3, and R-CINEX; Combutol; Pyrazina; Rifa-16 and for MDR Cycloserine; ethionamide; ofloxacin). The third shop stocked Macleods products as well as Lupin: AKT4—of which they sold approximately three boxes per month, with forty strips per box (this equals about four patients’ worth); AKT3; Combutol and R-Cinex; Macoxplus (isoniazid and rifampicin—Macleods); usually Macoplus Kid (Macleods), which was then currently unavailable, and Forecox (Macleods). They said that there was a shortage of streptomycin currently, but that it was usually supplied by Hindusatan Ltd. In addition, they had the following MDR treatments: amikacin (from ALKEM, Aristo) and they usually stocked ethionamide, but didn’t have it at present. In the fourth shop to stock TB drugs they had AKT4, AKT3, Combutol, Pyzina and two Cadila products—Microbutol and P-zide; and for MDR they had ethionamide, amikacin, streptomycin (usually but currently having difficulty getting hold of it), and ofloxacin; finally, in the fifth shop they stocked AKT4 (selling about two boxes per

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month, so equivalent to three patients worth); RCinex; Solunex (Macleods’ isoniazid); Macoxplus (Macleods) and Micobutol (Cadila). Also he used to have ethionamide five to six years ago before DOTS but not now. 7. AKT-4 (Lupin), R-Cinex (Lupin), and Forecox (Macleods) at one; Combutol (Lupin), Combunex (Lupin), AKT-4 (Lupin), R-Cinex (Lupin), Forecox (Macleods), Rifa i-6 (Concept), Rifa i-6 kid forte (Concept), Rifacept Kid-3 (Concept), and Pyzina-500/700 (Lupin) at the next; Combutol (Lupin), AKT-4 (Lupin), R-Cinex (Lupin), Rifa i-6 (Concept), and Rifacept Kid-3 (Concept) at the third; and Combutol (Lupin), AKT-4 (Lupin), R-Cinex (Lupin), Rifa i-6 (Concept), and Rifacept Kid-3 (Concept) at the fourth. 8. For more on the history of Lupin, and it place in the Indian market place for TB drugs, see Ecks and Harper 2013. For an article on the importance of trust in the pharmaceutical industry and its role in the TB program, see Brhlikova, Harper et al. 2011. 9. These categories were as follows: need for long-term forecast; predictability of demand; ease of quantification; patent issues; alternative suppliers; price stability; cost; quality risk; cold chain; dispensing challenges; duration of treatment; risk of expiry; consequence of stock out; and reporting requirements. In contrast, only the category of quality risk was extremely difficult for first-line drugs. 10. For more on this, see Brusle 2010 and the contributions to the special edition of the European Bulletin of Himalayan Research on Nepalese migrations of which Brusle’s introduction is a part.

REFERENCES

Brusle, T. 2010. “Nepalese Migrations: Introduction.” European Bulletin of Himalayan Research, special edition on Nepalese migrations, vols. 35–36:16–23. Brhlikova, P., I. Harper, R. Jeffery, N. Rawal, M. Subedi, and M. Santhosh. 2011. “Trust and the Regulation of Pharmaceuticals: South Asia in a Globalised World.” Global Health 7, no. 1 (April 29): 10. Christie, D. A., and E. M. Tansey, eds. 2004. “Short-Course Chemotherapy for Tuberculosis.” In Wellcome Witnesses to Twentieth Century Medicine 24. London: Wellcome Trust Centre for the History of Medicine at UCL. www.history.qmul.ac.uk/research/modbiomed /Publications/wit_vols/44847.pdf. Das, V., and R. K. Das. 2006. “Pharmaceuticals in Urban Ecologies: The Register of the Local.” In Global Pharmaceuticals: Ethics, Markets, Practices, edited by A. Petryna, A. Lakoff, and A. Kleinman, 171–205. Durham, NC, and London: Duke University Press. Ecks, S., and I. Harper. 2013. “ ‘There Is No Regulation, Actually’: The Private Market for AntiTB Drugs in India.” In When People Come First: Anthropology, Actuality and Theory in Global Health, edited by J. Biehl and A. Petryna, 252–75. Durham, NC: Duke University Press. Farmer, P., and J. Kim. 1998. “Community Based Approaches to the Control of Multidrug Resistant Tuberculosis: Introducing ‘DOTS-Plus.’ ” BMJ 317:104–10. Fryatt, R. 1995. “Foreign Aid and TB Control Policy in Nepal.” Lancet 346 (8971): 328. Gandy, M. 2003. “Life without Germs: Contested Episodes in the History of Tuberculosis.” In The Return of the White Plague: Global Poverty and the “New” Tuberculosis, edited by M. Gandy and A. Zumla, 15–38. London and New York: Verso.

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Gandy, M., and A. Zumla. 2002. “The Resurgence of Disease: Social and Historical Perspectives on the ‘New’ Tuberculosis.” Social Science and Medicine 55:385–96. Hamlet, Neil, and Sushil Chandra Baral. 2002. Case Study of National Tuberculosis Programme Implementation in Nepal. Washington: World Bank. http://documents.worldbank .org/curated/en/2002/10/5173594/case-study-national-tuberculosis-programme -implementation-nepal. Harper, I. 2005. “Interconnected and Interinfected: DOTS and the Stabilisation of the Tuberculosis Control Programme in Nepal.” In The Aid Effect: Giving and Governing in International Development, edited by David Mosse and David Lewis, 126–49. London: Pluto. ———. 2006. “Anthropology, DOTS and Understanding Tuberculosis Control in Nepal.” Journal of Biosocial Science 38:57–67. Harper, I., N. Rawal, and M. Subedi. 2011. “Disputing Distribution: Ethics and Pharmaceutical Regulation in Nepal.” Studies in Nepali History and Society 16 (1): 1–40. Jochem, K., R. Fryatt, I. Harper, A. White, H. Luitel, and R. Dahal. 1997. “Tuberculosis Control in Remote Districts of Nepal Comparing Patient-Responsible Short-Course Chemotherapy with Long-Course Treatment.” International Journal of Tuberculosis and Lung Disease 1: 502–8. Noyes, J., and J. Popay. 2007. “Directly Observed Therapy and Tuberculosis: How Can a Systematic Review of Qualitative Research Contribute to Improving Services? A Qualitative Meta-synthesis.” Journal of Advanced Nursing 57, no. 3 (February): 227–43. NTC (National Tuberculosis Centre, Government of Nepal). 2011. “National Tuberculosis Control Programme Nepal: Annual Report, 2066/67 (2009/2010).” http://nepalntp.gov .np/index.php?view=publication. Ogden J, G. Walt, and L. Lush. 2003. “The Politics of ‘Branding’ in Policy Transfer: The Case of DOTS for Tuberculosis Control.” Social Science & Medicine 57, no. 1 (July): 179–88. Pillay, M., and W. Sturm. 2007. “Evolution of the Extensively Drug-Resistant F15/LAM4/KZN Strain of Mycobacterium Tuberculosis in KwaZulu-Natal, South Africa.” Clinical Infectious Diseases 45:1409–14. Porter, J., K. Lee, and J. Ogden. 2002. “The Globalisation of DOTS: Tuberculosis as a Global Emergency.” In Health Policy in a Globalising World, edited by K. Lee, K. Buse, and S. Fustukian, 181–94. Cambridge: Cambridge University Press. Tuberculosis Control Programme Nepal. 2010. “Nepal National Strategic Plan: Implementation of Stop TB Strategy 2067/68–2071/72 (16 July 2010–15 July 2015).” http://nepalccm .org/resources/tuberculosis/pdf/nationalstrategicplan2010–15.pdf. Volmink, J., and P. Garner. 2007. “Directly Observed Therapy for Treating Tuberculosis.” Cochrane Database of Systematic Reviews, no. 4 (October 17), article no. CD003343.

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13 THE JURIDICAL HOSPITAL João Biehl

While the justiciability of socioeconomic rights is of increasing interest internationally, the volume of individual right-to-health lawsuits in Brazil stands out (Biehl, Petryna, et al. 2009; Collucci 2009; Gauri and Brinks 2008; Scheffer et al. 2005; Yamin and Gloppen 2011). Brazilian states are seeing the number of successful lawsuits brought in their courts reaching into the tens of thousands—a process that is, according to officials and some public-health scholars, altering administrative practices, encroaching upon health budgets, and ultimately producing inequality (Azevedo 2007; An Injection of Reality 2011; Ferraz 2009). For the past four years, I have been coordinating a collaborative multisited ethnographic study of right-to-health litigation in the southern Brazilian state of Rio Grande do Sul, trying to understand this judicialization of health from a grassroots perspective (Biehl n.d.). With a population of eleven million, this state has the highest number of such health-related lawsuits in the country. The number of new lawsuits grew more than 1,000 percent in just seven years, from 1,126 new cases in 2002 to 17,025 new cases in 2009 (figure 13.1). The majority of these judicial claims involved access to medicines, making up 70 percent of cases in 2008 and 2009. Our task was to find the people who judicialize and to illuminate their travails. For me, what is extraordinary in right-to-health litigation—and why it is so important to study this phenomenon—is not simply its ever-growing numbers, but the fact that it allows the reentry of human voices into public debates about the object and scope of the right to health, the nature of care through and beyond technology, and the public–private

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figure 13.1 Health lawsuits, Rio Grande do Sul, 2002–9.

interface in contemporary governmental institutions. In order to address these issues in some depth, let me begin with an individual story.

“ I O N LY J U D I C I A L I Z E T H I S M E D I C I N E B E C A U S E I W E N T I N T O D E B T PAY I N G F O R I T ”

Edgar Lemos, a retired bus driver, lives in a lower-middle-class neighborhood of Porto Alegre, the capital of Rio Grande do Sul. Dealing with significant motor difficulties, Edgar had to wait for more than a year for a specialized neurological appointment at a nearby public hospital. He was finally diagnosed with hereditary cerebral ataxia in November 2008. The neurologist prescribed the drug Somazina, which is not included on any governmental drug formulary. Coming from a destitute family, Edgar had worked since the age of eight. He was proud of the gated brick-and-mortar house he himself had built on the top of a hill. Edgar’s ataxia affected not only his mobility but also his sense of dignity and worth, since it made him dependent on the care of his wife and two adult daughters. While Edgar felt that Somazina was helping to halt the degeneration of his motor abilities, he was also taking a variety of other drugs, from statins to antihypertensives and antianxiolytics, to soothe additional symptoms. During a conversation I had with him over his dining-room table in August 2011, Edgar opened a box containing the five medicines that make up his regimen. As he held each one in turn, he said, “This one I don’t judicialize, this one I don’t judicialize. . . .

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I only judicialize this medicine because I went into debt paying for it.” A monthly supply of Somazina costs about two hundred dollars. After paying for the drug out of pocket for several months, Edgar had to take out a bank loan. Unable to keep up with house expenses and his loan interest, he had “no other alternative but to judicialize.” He learned about the Public Defender’s Office from other patients also waiting for specialists’ referrals at the public-health post, and filed a lawsuit to compel the state to pay for his medication. Attorney Paula Pinto de Souza, who handled Edgar’s case, says that the Public Defender’s Office has become “a juridical hospital.” As a legal advocate for the poor and chronically ill, she sees her job as being to ameliorate suffering and to restore the rights of her clients. “The person,” she explains, “comes here sick and wronged by the failure of public policies. We are beyond preventive medicine here, and the concept of health as physical, mental, and social well-being is no more.” The Porto Alegre district judge issued a court injunction on his behalf, and Edgar received the medicine for several months, but then, Edgar said, “the delivery stopped.” He filed a new claim and won another injunction for three additional months of treatment. As state attorneys were appealing the judge’s decision, Edgar nervously anticipated having to renew the lawsuit again. As for why he was not judicializing the other drugs he was taking, Edgar reasoned, “I know that the state cannot give everything to everyone. I have to do my part and pay for whatever I can.” The lawsuit is only one part of Edgar’s labyrinthine treatment travail. Judicialization is not an attractive option to begin with. And although it saves him money, Edgar must periodically renew the lawsuit, with no guarantee that drug delivery will continue. One could say that Edgar even prefers the position of consumer instead of citizen since it gives him more control and confidence. The market, in this case, is more reliable than the welfare state. The medicine box is Edgar’s arsenal. Yet what does not fit in this box is the psychosocial care, for example, that could help Edgar improve his quality of life as the disease progresses. And a lawsuit would not help him gain access to such services.

T H E J U D I C I A L I Z AT I O N O F B I O P O L I T I C S

Our research team moved across domestic, clinical, judicial, and administrative domains to track the interconnection of sites and the interplay of scales that the judicialization of health calls on and calls into question (Biehl 2013). And while examining the tense negotiations of the Brazilian constitutional right to health in daily life, I often had a sense of social roles and political positions out of place: of the judiciary as a sort of pharmacy, the public defender as a physician, the physician as an activist, the patient association as legal counsel, and the patient-citizen becoming the consumer—among other translocations and displacements. I found Michel Foucault’s (2008) tentative reflections on biopolitics and neoliberalism helpful as I tried to understand the form and reach of these novel medico-socio-legal

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realities—in particular, his observations on the frugality of government in contexts where market exchange determines value. But these realities also contravened Foucault’s reflections, since they underscored the importance of the juridical subject to late-liberal political economies. In his 1978–79 lectures at the Collège de France, Foucault argued that we can adequately analyze biopolitics only when we understand the economic reason within governmental reason, suggesting that the market shapes and even determines governmental logics. In Foucault’s words, “The market constitutes a site of veridiction-falsification for governmental practice. Consequently, the market determines that good government is no longer simply government that functions according to justice” (2008, 32). The ways and means of right-to-health litigation in Brazil reveal an intense experiential-political-economic field. Here the penetration of market principles in health-care delivery is unexpectedly aligned with the juridical subject of rights. The rational choicemaking economic subject (necessarily a consumer of technoscience) is also the subject of legal rights. The right to life is claimed somewhere between the clinic, the court, and the marketplace. What do these processes of judicialization mean for how anthropologists approach the study of politics and engage with ongoing debates, inside and outside the academy, about the relationship of health to human rights and social justice? How are the interpenetrating domains of health, therapeutic markets, and the law emerging as implicit and explicit sites for claiming political rights and confronting political failures? While much recent anthropology has stayed attuned to politics (Comaroff and Comaroff 2011; Das 2007; Ferguson 2006; Petryna 2013; Spencer 2007)—even as the substance of what is considered “political” has varied—and anthropologists have indeed productively applied Foucault’s concept of “biopower” to a variety of contexts (Fassin 2007; Fassin and Pandolfi 2010; Nguyen 2010; Ong and Collier 2005; Rabinow and Rose 2006), we are only beginning to capture the fluidity and fragility of biopolitical processes and their entanglement with the market as a testing ground for techniques of governance and self-fashioning (Biehl 2005, 2007; Biehl and Petryna 2011; Edmonds 2010; Han 2012). Most compellingly, anthropologists have begun to examine the politics involved in the formation of para-infrastructures such as humanitarian interventions and therapeutic policies (Biehl and McKay 2012). With the term para-infrastructure, I mean to call attention to, and account for, the interstitial domain of political experimentation that becomes visible in people’s case-bycase attempts to “enter justice” in Brazil. There is no predetermined strategy of control in the judicial para-infrastructure. Norms are constantly in flux, and numerous parties— state and market institutions as well as experts, legal representatives, and citizens—can manipulate levers of access. While laying claims to life or facing off over and disputing responsibility, evidence, and costs–benefits, these various parties bide their time and become at once empirically present and permeable. Although precarious, para-infrastructures such as the judicialization of health significantly inform the ways of living that people take up in the context of ailing or inadequate

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public institutions, as well as the scope and reach of governance in real time. Attention to such “intermediary power formations,” as I considered them elsewhere (Biehl 2007, 94)—and to the growing “judicialization of politics” (Comaroff and Comaroff 2006)— presents new ethnographic quandaries. They compel us to engage and think through the ambiguous political subjectivities and social formations that crystallize amid the blurring of distinctions between populations, market segments, political movements and constituencies, and collective objects of intervention or disregard. Moving across various scales of anthropological analysis, this chapter brings into view lives and living forged across exceedingly complex and often contradictory institutions. In what follows, I try to describe the entanglements of the judicialization of health without claiming that it is seamless. Instead, I urge us to consider how this new political phenomenon compels sick persons, laws, experts, officials, and commodities to shuttle between the home, the hospital, public offices, and the courtroom, remaking those spaces and themselves. As ethnographic descriptions and people’s stories move in and out of this larger narrative of the pharmaceuticalization and judicialization of health, I mean to leave us with a sense of how present-day institutions and social fields dance, and how ethnographic writing situated at their intersections must also keep in step. Ethnographic realities can help us to refine, complicate, and even dislodge totalizing assumptions about neoliberal structural adjustments and market-driven societies. In the Brazilian judicialization of health, we do not see a top-down biopolitical model of governance in which population well-being is the object of knowledge and control, but rather a struggle over the utility and purpose of government by multiple private and public stakeholders. At stake here are the ways in which government (qua drug regulator, purchaser, and distributor) facilitates a more direct relationship, in the form of technology access, between the atomized and ambiguous political subjects of rights and interests and the biomedical market. Surprisingly, the decentralization of state authority has created the space for a return of the juridical subject, but in an altered form. Neither entirely controlled by nor fully accountable to the state or the market, those who inhabit this new political subject position negotiate the constraints and possibilities of a technological society using jurisprudence. They work through available legal mechanisms and instantiate new sociopolitical domains to engage and adjudicate their demands, making abstract human rights concrete. These various developments, in turn, end up consolidating the judiciary as a critical site of politics—and of political economy.

F R O M T H E R I G H T TO H E A LT H TO T H E R I G H T TO PHARMACEUTICALS

Even if only cursorily, let me first place these realities and claims in historical context. Two concurrent and paradoxical trends informed the structure of Brazil’s Unified Health System (SUS), which extended health coverage to all citizens in the late 1980s: on the

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one hand, the trend toward greater recognition of the role of government in the fulfillment of social rights through the democratic constitution of 1988; and, on the other hand, the neoliberal theory of government in which state functions were decentralized and outsourced to the private sector. While the federal government assumed a central role in public-health funding (also managing some programs of prioritized diseases requiring high-cost treatments), state and municipal health secretariats had to develop new structures to assess health needs and to manage funds for care delivery. This arrangement delegated responsibility but did not ensure funding compliance and technical capacity for implementation. Thus, although Brazil today has one of the world’s most advanced AIDS programs, many people go to public pharmacies only to find that basic medicines are out of stock and that the newer medicines they seek—as in Edgar’s case—are not included on official formularies. Governments at all levels have not been able to manage a complex health-care system under the increasing technological, infrastructural, and economic demands of the public and private sectors, which are becoming less distinguishable from one another. With a population of about two hundred million people and an economy on the rise, Brazil has one of the fastest-growing pharmaceutical markets in the world (with an estimated total value of more than twenty-five billion dollars in 2012, according to SINDUSFARMA). Public and private doctors increasingly prescribe, and patients demand, new medicines, some of uncertain benefit (Petryna 2009; Gertner 2010). Newer medicines, however, are often available only through private purchase. Unable to pay out of pocket or to find low-cost generics at public pharmacies, patients are increasingly suing the government to obtain what they need. As I documented in the book Will to Live: AIDS Therapies and the Politics of Survival (2007), AIDS activists were among the first to successfully equate the constitutional right to health with access to pharmaceuticals. In the context of the fight against HIV before the availability of antiretroviral drugs (ARVs), there was an incredible emphasis on knowledge, empowerment, and the recognition of how stigma, discrimination, and social marginalization led to infection. But these are hard issues to address, and with the availability of ARVs, the emphasis of the response shifted to a more biomedical and less comprehensive approach. What we are seeing now in Brazil is both how the success of this shift has affected how other health issues are addressed, and the limitations of the emphasis on pharmaceuticalization. In terms of both delivery and demand, public health is now understood less as prevention and primary care and more as access to medicines and community-outsourced care; that is, public health has become increasingly pharmaceuticalized and privatized. In this process, the country is becoming a profitable platform of global medicine. It is estimated that almost 50 percent of the adult population (about sixty million people) uses pharmaceuticals on a daily basis. The judicialization of the right to health does not resist these trends. But it can, I believe, point to what is missing in the health systems and provide a critical supplement to fragile social support networks as patients face the increasing privatization of health

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care. People often use the expression entrar na justiça, “to enter the judiciary” or, literally, “to enter justice,” to refer to their lawsuits. There is a poetic force to this expression: the recognition of a generalized desire to want to belong to the body politic and to no longer live out of justice—the vision of a country with less inequality and discrimination. Recognizing the fact that the judicialization of health raises questions not only philosophical but also practical, the judiciary has by and large chosen as its main guide the concrete circumstances of patients litigants instead of abstract legal arguments. In questioning the place of the people in the design and implementation of public policy, the judiciary is also exposing the realpolitik of the executive and the legislative branches of government, and this, in turn, is opening a new chapter in the history of democracy in Brazil. In this panorama in flux, the social is up for grabs. As Chief Justice Joaquim Barbosa told me in an interview in June 2013, “It is the judiciary that represents society.”

T H E M Y T H S O F J U D I C I A L I Z AT I O N

There is an emerging body of scholarship on right-to-health litigation, but most studies tend to corroborate the views of many public-health administrators: that the judiciary is overstepping its role and that judicialization generates enormous administrative and fiscal burdens, distorts pharmaceutical policies, encourages irrational drug use within the public health-care system, and, ultimately, widens inequalities in health-care access (Borges and Ugá 2010; Da Silva and Terrazas 2011; Messeder et al. 2005; Pepe et al. 2010; Vieira and Zucchi 2007). Yet the evidence for these claims is too often obscured by ideological arguments and constrained by small samples and limited geographic coverage, with few variables examined. Many scholars have argued that the judiciary should be more concerned with the problem of limited resources and should abide by established clinical protocols. The constitutional right to health, they say, is a governmental mandate, not the right of any single individual. And throughout these works, people—their healthseeking struggles, hopes, and outcomes—are nowhere to be found. In my view, this line of critique does not account for the on-the-ground realities of patient-citizens, nor does it acknowledge the political possibility that individual litigation represents. Ideologically committed to evidence-based public health, these critics fail to recognize that right-to-health litigation can be an urgently needed corrective measure when administrative mechanisms fail people. There are important differences in the field of evidence-based medicine itself, and critics don’t seem to grasp that judicialization itself could serve to compel the creation of new sources of evidence to improve the management of public health. Individual demands are not simply the antithesis of a collective need: individual experiences are often modeled by common phenomena within different communities. I am not saying that right-to-health litigation is a perfect process—it is rather costly administratively and humanly—but that it is instead an opportunity to ask how these citizens’ demands could be politicized to attend to the diverse, urgent needs of all people.

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Certainly, litigation is not a substitute for health policy, but it can be a crucial adjunct; individual claims highlight what is missing in health policy and make systems responsive to citizens, making the state care. To respond to the need for a people-centered knowledge of the struggles to realize the right to health, we created a database of lawsuits against the state of Rio Grande do Sul. Our data-collection team worked in the Solicitor General’s Office, which is responsible for defending the state. From September 2008 to June 2009, we analyzed 1,080 lawsuits being reviewed by state prosecutors. Edgar’s case (presented earlier) was not among these lawsuits, but as I share some of our results you will see that his travails are not an exception. Among the plaintiffs who reported their employment status, more than half were retired, and about one-fifth were unemployed. Among those who reported income, over half earned less than the monthly national minimum wage (about three hundred dollars) and relied on the free legal services of public defenders. Past research has suggested that right-to-treatment litigation is, for the most part, a practice of the financially better off (Chieffi and Barata 2009; Vieira and Zucchi 2007) and that low-income patients tend to sue for low-cost medicines while higher-income patients tend to sue for very expensive medicines (Da Silva and Terrazas 2008, 12). In contrast, our results suggest that patients who procure medicines through the courts are mostly poor individuals who are not working and who depend on the public system for both health care and legal representation. Roughly two-thirds of the medicines sought through litigation were already on governmental drug formularies. About a quarter of lawsuits were exclusively for access to specialized high-cost medicines, though low-cost essential medicines were frequently requested alongside them. Off-formulary medicines requested by plaintiffs were also often low cost, and many had been available in the market for a long time. This suggests that government pharmaceutical programs are failing to fulfill their role of expanding access and rationalizing use. Moreover, judges at district and higher court levels almost universally grant access to all medicines requested, recognizing that their provision is consistent with Brazil’s constitutional right to health. For example, in almost all cases, district judges granted plaintiffs an immediate injunction for access to medicines. In cases where the initial ruling was in favor of the provision of medicines, the state’s higher court most often upheld the decision. This staggering number of lawsuits is generating significant legal and administrative costs. In 2008, the state, which has a population of about eleven million people, spent $30.2 million on court-mandated drugs. This expense represents 22 percent of the total amount spent by the state on medicines that year (Biehl et al. 2009). While decentralization tried to establish clear responsibility at specific administrative levels—municipal, state, federal—our analysis found that plaintiffs tend to hold the regional state responsible for medicines, regardless of the designated responsible party,

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and that judges rarely disagree. State attorneys frequently argue that the state is not responsible for the provision of certain services. Judges, however, cite the principle of “solidarity” between levels of government to assert broad shared responsibility in guaranteeing the right to health. Lawsuits become the site of a reluctant and undisciplined cooperation. In this way, the judicialization of the right to health momentarily instantiates the state as the singular governmental entity responsible for the provision of social rights.

T H E J U R I D I C A L H O S P I TA L

Patients in our sample of 1,080 lawsuits were, for the most part, chronically ill. Almost half of patients (48 percent) reported cardiovascular disease, diabetes, disorders of the lipid metabolism, and pulmonary diseases. Some 16 percent of the patients reported neurologic and psychiatric conditions. Patient-plaintiffs in our sample had various comorbidities and procured multiple drugs for their treatments. On average, they reported 1.5 diagnoses and requested 2.8 drugs. Among the twenty-five most requested drugs, twentythree were medicines to treat chronic diseases, and only seven were not on official drug formularies. However, we also found patients with a single disease who demanded one high-cost treatment. Patients with chronic hepatitis C, for example, made up a significant number of cases. These patients typically demanded ribavirin and peginterferon alfa, both of which are on the federal government’s exceptional-medicines formulary. The high frequency of requests for drugs to treat chronic hepatitis C in our sample stands in sharp juxtaposition to the rare request—one single case—for medicines for HIV/AIDS. Both pathologies have a similar prevalence in the south of Brazil, and both treatments are distributed by governmental programs at no cost. What are some of the possible reasons for this sharp contrast? It may reflect variations in the efficiency of governmental pharmaceutical-distribution programs. Whereas the strategic-medicines program that distributes HIV/AIDS drugs is centrally managed and funded by the federal Health Ministry, with a single acquisition process for the entire country, the exceptional-medicines program is decentralized: it is managed by states that are federally reimbursed. The latter program depends on administrative cooperation among federal and state governments and is vulnerable to the vagaries of regional health policy and management. The contrast may also result from the specific eligibility criteria and, in some cases, from the detailed treatment protocols through which exceptional and special medicines must be accessed in the public health-care system. When patients fall outside of eligibility requirements and protocols, they may use lawsuits to access treatment. In addition, patients who were granted requests may use lawsuits to expedite treatment delivery or to guarantee provision of medicines when the government fails to provide them. Lawsuits may be a mechanism with which to challenge treatment protocols that

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limit access based on cost-effectiveness and epidemiologically derived risk–benefit considerations. Rather than accepting these protocols, our results show that judges give broad deference to individual circumstances and physicians’ prescriptions—deference that may undercut efforts to rationalize pharmaceutical use. As in the case of one patient named Nelson Silveira, the judiciary seems to offer citizens who are diseased and politically injured the possibility of articulating a time-sensitive legal effort to make the state act biopolitically so as to guarantee the possibility of survival. Head down, Nelson Silva walked into the Public Defender’s Office in August 2010 accompanied by his wife, Sandra, who did most of the talking. At first, attorney Paula Pinto de Souza and I mistook Sandra for the patient, but it soon became evident that the “we” she referred to in our conversation was a kind of domestic advocacy group. “We cannot interrupt the treatment one more time,” said Sandra. Nelson had retired as a steel-factory worker, and she was still a kindergarten teacher. They resided in the nearby city of Esteio and had two adult children. Sandra begged the public defender to “treat us,” for “we know that people who come here get the medicine they need.” Nelson had chronic hepatitis C, and he was greatly benefiting from the forty-eightweek treatment regimen of ribavirin and peginterferon alfa. His doctor said that he needed twenty-four extra weeks of treatment, but the state’s medical expert denied the request, and “my doctor told me to come here,” Nelson said. “It’s just a matter of the judge releasing the treatment.” “Our first treatment,” Sandra continued, “was in 2001 with regular interferon.” Nelson then added, “But after a while the state pharmacy did not have interferon, so I had to interrupt the treatment.” In 2005, he fell ill and a doctor at Hospital Conceição prescribed ribavirin and peginterferon alfa. The Health Secretariat denied Nelson’s treatment request, alleging that this would be “re-treatment,” which was not allowed by the medical protocol in place. “Then we had to file a lawsuit for him to get it,” Sandra stated. In 2009, he was eligible for re-treatment and now needed the medicines for twenty-four additional weeks. “The doctor gave me the meds for two weeks,” Nelson continued, “but I am afraid that the legal procedure will take too long and that by the time I get the meds, if I get them, I will have to stop treatment, for it failed once again. I need it fast.” Nelson was desperate to adhere to the treatment. For him and so many other patient-plaintiffs facing a fatal condition, judicialization is a temporal lever. “We don’t want to stop everything we started,” lamented Sandra. In line with the philosophy of “I will not let the citizen die,” Souza gave them a road map of all they had to do and the documents they had to bring so that she could open the lawsuit the following day. Here, the court system— so often thought of as a place where claims go to die a quiet, bureaucratic slowmotion death—winds up being a surprising milieu of catalysis for the uncertainty and time-sensitivity of the body and its possibilities of repair and, ultimately, of survival. “Afterward,” Souza told Nelson, “you open a lawsuit against the state for medical injury.”

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T E M P O R A RY C O L L E C T I V E S

The next story I want to tell suggests new social forms emerging on the interface of rightto-health litigation, medical technology, and the state. Where institutions fail, communities articulate fragile and short-range solutions that nevertheless demonstrate that social ties are often the last and best resource in the face of disregard and death. Sixteen-year-old Leticia and nine-year-old Katiele are the daughters of a migrant family that lives on the outskirts of Porto Alegre. Both suffer from Phenylketonuria, or PKU, a metabolic genetic disorder. The difference is that the younger sister, Katiele, was immediately diagnosed and treated with a combination of diet and medication, whereas Leticia, who now suffers from severe mental retardation, was not. Leticia was diagnosed only because when her sister was born screening had become mandatory, and the special baby formula needed to prevent the development of the disease had become universally available via SUS. In the state of Rio Grande do Sul, about 120 patients need this formula. But given distribution problems, twenty-five families had to file lawsuits to ensure access. We interviewed all these litigant families, who, for the most part, live in the interior and are in fact poor. Like Marizete and Neri (Leticia and Katiele’s parents), they all have had low levels of formal education. But this does not stop them from judicializing. Leticia and Katiele’s family receives the formula through administrative procedures, but they decided to file lawsuits to obtain special food (such as pasta and flour), which is vastly more expensive than the common food that the sisters are not allowed to eat, and which took up much of the family’s budget. Because the state failed to make the formula available, the parents also thought about judicializing it. At the very last moment, however, the family decided not to do so because Dr. Paula Vargas, the girls’ beloved physician, and other families lent them formulas till distribution resumed. As Marizete puts it, “Mothers help each other. When one gets something she teaches the others. So one keeps helping the other, until we get it.” In this example, the family of Leticia and Katiele found something that they identified as more useful than or preferable to judicialization: a caring health professional and a social network. Rather than turning to the courts, Dr. Vargas helped to create and sustain solidarity networks among her patients, facilitating the sharing of the formula when it was missing, and mutual support among families living with PKU: “When the formula is lacking, families can call me anytime and I’m sure I can do something even when the state is not doing its job. These patients simply cannot go without the treatment. It would be a crime.” Rightto-health lawsuits give us only a partial view of the therapeutic trajectories of patients and their families: new sociomedical forms also become a kind of para-infrastructure for access to treatment and care. Without this, Dr. Vargas says, “many more would judicialize.” As the cases of Edgar and of Leticia and Katiele show, the booming number of rightto-health lawsuits not only points out the weakness of public-health administration and

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figure 13.2 From left, Marizete, Leticia, Neri, and Katiele. Photograph by Torben Eskerod.

policy in Brazil and that the judiciary has indeed become a powerful purveyor of medical technology access, but also puts into focus a widespread reductionist approach to health care. The needs of patients are not addressed holistically, and in spite of the universality of health care, its delivery is stuck in an access and volume mind-set, rather than focusing on the value of interventions to patients and families over time (Kim, Farmer, and Porter 2013).

OPEN-SOURCE ANARCHY

According to legal scholar David Fidler, developments in health jurisprudence “have produced open-source anarchy and a more elastic relationship between power and ideas in global politics” (2008, 410). In such an elastic relationship, “changes in material capabilities of state and non-state actors, and changes in the world of ideas, have more impact on each other than in the closed, state-centric system that prevailed during the Cold War” (410). Fidler recognizes a “deeper importance for law in public health endeavors within and between countries” (394). Anthropologists John Comaroff and Jean Comaroff have been attending to such a “judicialization of politics” in postapartheid South Africa and how it has affected social mobilization, particularly in the field of HIV/AIDS. Class struggles, they argue, “seem to have metamorphosed into class actions. Citizens, subjects, governments, and corporations litigate against one another, often at the intersection of tort law, human rights law, and the criminal law, in an ever mutating kaleidoscope of coalitions and cleavages” (Comaroff and Comaroff 2006, 26; see also Vianna 1999). The judicialization of right-to-health litigation thus speaks to productive open-source anarchy at both macro- and microlevels in Brazil today. As I mentioned earlier, policy makers contend that the judiciary is overstepping its role and that judicialization skews

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budgets and increases inequalities in health-care access. Yet many local judges working on right-to-health cases feel they are responding to state failures to provide needed medicines and that these waves of lawsuits are a milestone in the democratization of a culture of rights. For these judges, the poor Brazilians who are working through modes of legally arbitrated justice to access health care are not just fighting against legalized privileges and legitimated inequalities, as in James Holston’s (2009) chronicle of “insurgent citizenship” practices in Brazil’s new urban spaces. Rather, the judges see widespread litigation as the expression of a distinct, equalizing legal system and of a novel rights-conscious society. Whether such a democratization of socioeconomic rights can be attained through individual claims and in courts, however, is contested. District judge Eugenio Terra, who is in charge of all health-related cases in Porto Alegre, does not agree that the judiciary is exceeding its role. In line with the experience of attorney Souza at the Public Defender’s Office, he, too, finds that lawsuits are filed largely by poor and desperate patients seeking treatments that should be available in the public system. “I am doing social justice, one by one,” he told me in an interview in August 2011. “When I am issuing an injunction for cancer-treatment provision, I am also indicting services that have not kept up with people’s needs.” Rather than accepting one-size-fits-all medical protocols, judges give broad deference to individual circumstances and physicians’ prescriptions—a practice that may appear to undercut state efforts to rationalize pharmaceutical use. State high-court judges like Denise Oliveira Cezar are also holding pharmaceutical companies accountable, particularly to patients participating in clinical trials. As she puts it, “We struggle for jurisprudence. We are challenged to create the right and to enable the person of rights.” If access to AIDS therapies was the litmus test of the right to health in the 1990s, it is access to genetic therapies now. The last story I want to tell is that of twelve-year-old Alexandre Lima de Moura, who suffers from mucopolysaccharidosis (MPS), an inherited metabolic disorder. Every week, the fourth-grader travels with his mother, Cleonice, to Hospital de Clinicas in Porto Alegre, where he receives enzyme-replacement therapy—a treatment that costs about two hundred thousand dollars per year. Because of his age, Alexandre was not allowed to enroll in a clinical trial taking place at the hospital. Without “the right to be researched,” as the mother of another MPS patient put it, Alexandre became a patient litigant. With the legal support of a well-organized patient association in São Paulo (partially funded by the drug manufacturer), the family won a court injunction forcing the federal government to begin providing the therapy. Like all parents of MPS children we spoke to, Cleonice suggested that not obtaining this treatment would be unconscionable and tantamount to killing her child. She knew that the federal attorneys would appeal and was ready for the struggle: “Besides entering the judiciary, we also entered the media.” Cleonice has taken Alexandre’s cause to all possible media outlets and is also using his condition to educate neighbors, local medical personnel, and officials about the meaning of, in her words, “citizenship” and a “normal life.” “Ela é uma mãe boa” [She is a good

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mother], says Alexandre, who is thriving in school and seems to be responding positively to treatment. The role of market forces in judicialization—a mix of clinical trials and marketing strategies that target physicians’ prescriptions and fuel patient demand, and of industry lobbying to have new treatments included in governmental drug formularies while facing limited regulatory oversight—must not be overlooked. Ample evidence shows how laboratories’ monopoly on medico-scientific information and pharmaceutical marketing strongly inform physicians’ prescriptive habits and patients’ demands (Diniz, Medeiros, and Schwartz 2012). Additional ethnographic studies are in order; they could help us chart how judicialization has also become part of a pharmaceutical business plan in Brazil, supporting patient associations and lawsuits for access to high-cost medicines specifically to open or enlarge markets.

T H E R I G H T TO A N O N P R O J E C T E D F U T U R E

There is a heated debate in Brazilian courts on the positive duty the constitutional right to health imposes on the state and the extent to which the courts must enforce this right. But the country lacks a substantial public debate about the meaning of the right to health in light of medical advancements and financing, between what is possible and feasible and what is frugal and essential. As a “right to pharmaceuticals” is consolidated in Brazil, the various branches of government have yet to develop a systematic approach to tackling drug costs and financing or to determine the responsibilities of private health-insurance plans in covering drug costs and medical services. Local governments should certainly track court cases and use them to inform efforts to remedy specific disease policies, administrative shortcomings, and poor public-health budgetary planning. Attention is also needed to broader aspects of the right to health, including interventions that tackle the social and political determinants of health such as education, water, sanitation, vector control, air pollution, and violence prevention, as well as access to justice. As for our understanding of the ever-growing and complex judicialization of the right to health, I believe that field research has much to contribute and that ethnography can work as an early warning system. People on the ground recognize what’s troubling them. And it is somewhere in the middle of their social lives that our critical work begins. Ethnographers are uniquely positioned to see what more categorically minded experts may overlook—namely, the empirical evidence that emerges when people express their most pressing and ordinary concerns, which then open up to complex human stories in time and space that should be the center of public debate and action. The judicialization of the right to health has become a para-infrastructure in which various public- and private-health actors and sectors come into contact, face off, and enact limited “one by one” missions. There is no pregiven biopolitical population in Brazil today to which Edgar, Leticia, Katiele, Alexandre, and thousands of other atomized subjects of rights belong. Seen from the perspective of these medical subjects and their

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fragile collectives—undesirable, according to actual care-delivery policies, budgets, and state public-relations efforts—biopolitics is an insecure enterprise—indeed, more a symptom of the limits of government than a marker of its presence and control. The ethnographic realities presented throughout this chapter also suggest that the subject of rights and the economic subject may actually be included or excluded according to shared or similar logics, practices, technologies, and knowledges, and that the pursuit and enforcement of rights may be a key means by which one becomes part of a market segment. If, for Foucault, “the question of the frugality of government is indeed the question of liberalism” (2008, 29), then in Brazil’s late-liberal moment, one could argue, the biopolitical question is not necessarily about the “futility” of the rehabilitation of diseased and underserved poor subjects but about the expansion of frugal government in the form of pharmaceutical access in lieu of infrastructural reform. Thus, in this contemporary republic of interests, we see the consolidation of “state activism without statism” (Arbix and Martin 2010, 6) coupled with extraordinary market expansion and the vanishing of “civil society” as a viable transactional reality. Yet people refuse to be stratified out of existence. The humanism and in-your-face politics of public defenders such as Paula Pinto de Souza (whom I briefly introduced you to) produces a pathway to improving patients’ situations. Against institutional realities that undermine health, control, and effectiveness, public defenders utilize medical and legal modes of veridiction and the framework of constitutional rights and human dignity to sustain their work and demand that the state act biopolitically. Chronically ill and poor people find their way into the judiciary reluctantly, tinkering with available human and material resources. They are neither governable nor disruptive of the system. This minimum biopolitical belonging is part and parcel of the immanent field people invent to live in and by as they navigate the vagaries of market inclusion and survival in wounded cities. The hard-to-pin-down patient-citizen-consumers to whom I introduced you speak to novel forms of social becoming at the interface of law and medicine, and their medicolegal trajectories show that politics matters differently to a growing number of low- and middle-income sick Brazilians. People’s life chances and health outcomes are overdetermined by the kinds of marketized juridical subjects they are able to become through appeals to the judiciary, government, and research and health industries driven by profit and the construction of new therapeutic market segments. As ethnographers, we must attend to the forms of statecraft (national and regional) and jurisprudence as well as to the kinds of medico-scientific literacies and political subjectivities that are built into the para-infrastructure of rights and interests that the judicialization of health has occasioned. We must consider both the possibilities opened up and the exclusionary dynamics at work at the judicialization front evident throughout Brazil and in other emergent economic powers. It is, paradoxically, by revealing the fragility of biopolitical interventions, showing how they are constantly entangled with and shaped by other (often

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economic) imperatives, that the stories of these patient litigants point to the temporal dimensions of medical technologies and to their own power to remake subjectivities and social worlds as they open up new spaces for claim making, contestation, and ethical problematization over what is frugal and what is vital. Taken together, these human accounts and numbers that I have shared with you also affirm the urgency of a crosscutting and holistic framework that integrates the right to health with comprehensive care and that links social justice to sustainable forms of development. At stake is the development of institutional capacities that go beyond the repetition of history and help to defend—in the luminous words of economist Albert Hirschman (1971, 37)—“the right to a nonprojected future as one of the truly inalienable rights of every person and nation.”

N OT E

I want to express my deepest gratitude to Torben Eskerod for his powerful photographic work and to Joseph J. Amon, Mariana P. Socal, and Adriana Petryna for all their creative insights and wonderful help with this research project. I also want to thank Alex Gertner, Joshua Franklin, Peter Locke, Alexander Wamboldt, and Igor Rubinov for their help, which has been particularly important. The Ford Foundation and Princeton’s Health Grand Challenges Initiative and the Woodrow Wilson School of Public and International Affairs generously supported research. Sections of this chapter appeared in American Ethnologist 40, no. 3 (2013): 419–36.

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Biehl, João, and Ramah McKay. 2012. Ethnography as Political Critique. Anthropological Quarterly 85 (4): 1211–30. Biehl, João, and Adriana Petryna. 2011. Bodies of Rights and Therapeutic Markets. Social Research 78 (2): 359–86. Biehl, João, Adriana Petryna, Alex Gertner, Joseph Amon, and Paulo Picon. 2009. Judicialisation and the Right to Health in Brazil. Lancet 373:2182–84. Borges, Danielle da Costa Leite, and Maria Alicia Dominguez Ugá. 2010. Conflitos e impasses da judicialização na obtenção de medicamentos: As decisões de 1a instância nas ações individuais contra o Estado do Rio de Janeiro, Brasil, em 2005. Cadernos de Saúde Pública 26 (1): 59–69. Chieffi, Ana Luiza, and Rita Barradas Barata. 2009. Judicialização da política pública de assistência farmacêutica e eqüidade. Cadernos de Saúde Pública 25 (8): 1839–49. Collucci, Cláudia. 2009. Triplicam as ações judiciais para obter medicamentos. Folha de São Paulo, January 9. www1.folha.uol.com.br/fsp/saude/sd0901200901.htm. Accessed April 21, 2013. Comaroff, John, and Jean Comaroff. 2006. Law and Disorder in the Postcolony: An Introduction. In Law and Disorder in the Postcolony, edited by Jean Comaroff and John Comaroff, 1–56. Chicago: University of Chicago Press. ———. 2011. Theory from the South; or, How Euro-America Is Evolving toward Africa. Boulder, CO: Paradigm. Constituição Federal do Brasil. 1988. http://dtr2004.saude.gov.br/susdeaz/legislacao /arquivo/01_Constituicao.pdf. Accessed April 21, 2012. Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Da Silva, Virgilio Alfonso, and Fernanda Vargas Terrazas. 2011. Claiming the Right to Health in Brazilian Courts: The Exclusion of the Already Excluded? Law and Social Inquiry 36 (4): 825–53. Diniz, Debora, Marcelo Medeiros, and Ida Vanessa D. Schwartz. 2012. Consequences of the Judicialization of Health Policies: The Cost of Medicines for Mucopolysaccharidosis. Cadernos de Saúde Pública 28 (3): 479–89. Edmonds, Alexander. 2010. Pretty Modern: Beauty, Sex, and Plastic Surgery in Brazil. Durham, NC: Duke University Press. Fassin, Didier. 2007. When Bodies Remember: Experiences and Politics of AIDS in South Africa. Berkeley: University of California Press. Fassin, Didier, and Mariella Pandolfi. 2010. Contemporary States of Emergency: The Politics of Military and Humanitarian Interventions. New York: Zone Books. Ferguson, James. 2006. Global Shadows: Africa in the Neoliberal Order. Durham, NC: Duke University Press. Ferraz, Octavio Luiz Motta. 2009. The Right to Health in the Courts of Brazil: Worsening Health Inequities? Health and Human Rights 11 (2): 33–45. Fidler, David. 2007. Architecture amidst Anarchy: Global Health’s Quest for Governance. Global Health Governance 1 (1): 1–17. ———. 2008. “Global Health Jurisprudence: A Time of Reckoning.” Georgetown Law Journal 96 (2): 393–412.

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Foucault, Michel. 2008. The Birth of Biopolitics: Lectures at the Collège de France, 1978–1979. Edited by Michel Senellart. Translated by Graham Burchell. New York: Palgrave Macmillan. Gauri, Varun, and Daniel M. Brinks, eds. 2008. Courting Social Justice: Judicial Enforcement of Social and Economic Rights in the Developing World. Cambridge: Cambridge University Press. Gertner, Alex. 2010. Science of Uncertainty: Making Cases for Drug Incorporation in Brazil. Anthropological Quarterly 83 (1): 97–122. Han, Clara. 2012. Life in Debt: Times of Care and Violence in Neoliberal Chile. Berkeley: University of California Press. Holston, James. 2009. Insurgent Citizenship: Disjunctions of Democracy and Modernity in Brazil. Princeton, NJ: Princeton University Press. An Injection of Reality. 2011. Economist, July 30. http://www.economist.com/node/21524879. Accessed April 21, 2013. Kim, Jim Yong, Paul Farmer, and Michael Porter. 2013. “Redefining Global Health-Care Delivery.” Lancet 382 (9897): 1060–69. Messeder, Ana Márcia, Claudia Garcia Serpa Osorio-de-Castro, and Vera Lucia Luiza. 2005. Mandados judiciais como ferramenta para garantia do acesso a medicamentos no setor público: A experiência do Estado do Rio de Janeiro, Brasil. Cadernos de Saúde Pública 21 (2): 525–34. Nguyen, Vinh-Kim. 2010. The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham, NC: Duke University Press. Ong, Aihwa. 2006. Neoliberalism as Exception: Mutations in Citizenship and Sovereignty. Durham, NC: Duke University Press. Ong, Aihwa, and Stephen J. Collier. 2005. Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems. Boston: Wiley-Blackwell. Pepe, Vera Lúcia Edais, Miriam Ventura, João Maurício Brambati Sant’ana, Tatiana Aaragão Figueiredo, Vanessa dos Reis de Souza, Luciana Simas, and Claudia Garcia Serpa Osoriode-Castro. 2010. Caracterização de demandas judiciais de fornecimento de medicamentos “essenciais” no Estado do Rio de Janeiro, Brasil. Cadernos de Saúde Pública 26 (3): 461–71. Petryna, Adriana. 2009 When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. Princeton: Princeton University Press. ———. 2013 Life Exposed: Biological Citizens after Chernobyl. New ed. Princeton, NJ: Princeton University Press. Rabinow, Paul, and Nikolas Rose. 2006. Biopower Today. Biosocieties 1 (2): 195–217. Scheffer, Mario, Andrea Lazzarini Salazar, and Karina Bozola Grou. 2005. O remédio via justiça: Um estudo sobre o acesso a novos medicamentos e exames em HIV/Aids no Brasil por meio de ações judiciais. Brasília, DF: Ministério da Saúde. SINDUSFARMA (Sindicato da Indústria de Produtos Farmacêuticos no Estado de São Paulo). 2012. Indicadores econômicos. Vendas em dólares (US$). www.sindusfarmacomunica.org .br/indicadores-economicos. Accessed April 21, 2013. Spencer, Jonathan. 2007. Anthropology, Politics and the State: Democracy and Violence in South Asia. Cambridge: Cambridge University Press. Vianna, Luiz Werneck. 1999. A judicialização da política e das relações sociais no Brasil. Rio de Janeiro: Revan.

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Vieira, Fabiola Sulpino. 2009. Ministry of Health’s Spending on Drugs: Program Trends from 2002 to 2007. Revista de Saúde Pública 43 (4): 674–81. Vieira, Fabiola Sulpino, and Paola Zucchi. 2007. Distorções causadas pelas ações judiciais à política de medicamentos no Brasil. Revista de Saúde Pública 41 (2): 1–8. Yamin, Alicia Ely, and Siri Gloppen, eds. 2011. Litigating Health Rights: Can Courts Bring More Justice to Health? Cambridge, MA: Harvard University Press.

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14 THE RIGHT OF RECOVERY Adriana Petryna “Do you know,” I hear, said into my ear, “my faith in you is very limited. You have been shaken off from somewhere, you have not come here on your own two feet. Instead of helping me, you make my deathbed more narrow.” FRANZ KAFKA, A COUNTRY DOCTOR

R E C O V E RY ’ S P E R I L S

Whether it is in the American privatized and extremely fragmented health system or in emergent economies such as Brazil, where a right to health is constitutionally mandated, sick individuals worldwide continue to struggle desperately to access medical care. All too aware of the prohibitive cost of such access, they may postpone it or never receive it. Insurance companies in the United States have discriminated against patients with preexisting conditions, and courts in Brazil routinely hear cases of patients litigating for treatment access. In the United States, for example, mortality rates for all cancers are 12% lower among the privately insured than they are for the uninsured. Even the most advanced cancer treatments science has to offer cannot reduce the risk of death from cancer by this much.1 That a “cure” for cancer is not merely hypothetical but a reality out of reach for so many raises questions not only about who has a right to access medical goods and a right to health, but also about who has a right to heal from disease. What social and political arrangements optimize recovery? And what arrangements make this path so perilous, even fatal? These questions are pertinent to the United States, where President Obama’s Patient Protection and Affordable Care Act was signed into law in 2010. This act focuses on the quality of patient outcomes rather than on the quantity of care. Yet the meaning of “quality outcome” has been hard to gauge. Understood as the affordance of the best chance for recovery (as well as a right not to be tormented by technological excess), what remains

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unthought with respect to quality, as I suggest in this chapter, is a meaningful narrative of the “morality” of medical recovery. While cost-effectiveness research, mandated by the new legislation, gains a more prominent role, such research largely focuses on a collective optimality, not on an individual one. In this essay I argue that quality is more than a research matter, a metric of savings, or a question of coverage or even of patients’ access to medical goods. I suggest that the focus on quality should prompt a reimagination of the ways we see and think about recovery, the missing coordinate in current health-reform debates that is also an urgent moral and scientific domain. The “true north” of my argument is not health or rescue at all costs but a conversation about what the new constellation of quality might look like and how patients can engage this constellation as a less costly and more obvious set of rights of recovery. The “measure of health,” wrote medical philosopher Georges Canguilhem (2008), “is a certain capacity to overcome crises and to establish a new physiological order, different from the old. Health is the luxury of being able to fall ill and recover” (132; italics mine). This essay juxtaposes this idea of health as luxury with the unbearable cost of survival in a variety of industrialized medical settings. It asks, What insures not only the right to health but also a right to heal, or a right of exit from one’s disease? What is a right of recovery? In invoking such a right, I do not mean to attribute omnipotence to the medical profession (which it does not possess). Rather, I highlight the moral challenges associated with recent mandated shifts from volume-based to quality-based conceptions of health care, of harnessing therapeutic potential in a wide range of patients and circumstances. This harnessing of therapeutic potential becomes even more complicated in global health, where responses to epidemics such as AIDS have been considerable but where a citizen’s right to health (mandated by over one hundred national constitutions worldwide) often equates with a citizen’s right to pharmaceuticals. Varieties of therapeutic agents and medical authorities proliferate, from physicians working in clinics to judges ruling on medicinal claims in courts and physician-researchers providing temporary care, albeit through an experimental compound, in global clinical-trial settings that are nested in local public-health facilities.2 State public-health obligations move from clinics and patient–doctor relations to “outsourced” institutions—transnational and nongovernmental organizations to be sure, but also state judicial and local experimental public/ private domains. As the trajectories of patient-subjects and patient-litigants considered in this essay suggest, these “paramedical” health-care settings are, for better or worse, acting as surrogates for treatment access in Brazil and Eastern Europe—two regions about which I have the most ethnographic knowledge and familiarity.3 This essay captures some of the therapeutic dynamics of these “proxy” terrains of health access, where patients experience medical attention episodically (registered in terms of medicinal legal cases won or clinical trials accessed) and where powerful therapeutic misconceptions are often at play. Clinical trials in Poland and right-to-health

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courts in Brazil are all about innovation, be it technical or social. The globalization of clinical trials, for example, transferred critical biomedical resources as well as practical and commercial know-how to medical experts and authorities working in Eastern European public-health systems. And in the wake of a progressive 1988 democratic constitution affirming health as a right of the people and a duty of the state, courts in Brazil have been inundated with citizens’ legal challenges for access to a variety of medicines, including ones that are on government lists but out of stock. Humanitarian, legal, and experimental settings make up new infrastructures of survival and global patient life.4 Yet one key feature of these proxy health infrastructures is the impermanence of obligation. Patients must overcome this impermanence with specific kinds of appeals. As patients’ roles are redefined—from patients to clients or patientsubjects and patient-litigants in the pursuit of biomedical care or goods—their experiences belie traditional (or idealized) notions of doctor–patient interactions. I illustrate these dynamics with three ethnographic case studies. In the first case, I show how patients experience an untethering from their “sick roles” to fit new criteria of biomedical access. The sick role, a concept introduced into the sociology-of-medicine lexicon in the last century (Parsons 1951), describes the social dimensions of falling sick and the attendant rights and duties of doctors and patients and their families toward a patient’s recovery.5 The sick role was a deviance-controlling script meant to “guarantee” reintegration of the sick into a functioning social world. To be sure, the work of health-service agencies involved distributing medicines, but the goal of therapeutics was predominantly a reintegrative process (Parsons 1975, 260). The sick role ascribed moral efficacy to a social world in which the sick not only are managed in terms of disease but also have a chance to recover through good faith, unmotivated by secondary gains. Today, when judges become pharmacists or state health agents are emergency-care providers, there are often few explicit norms informing decisions about whom to care for, when to care for them, and for how long. Where disease may lead to capitalizable data (as in for-profit clinical trials), the focus of health is not on recovery from disease per se but on the political and economic exploitation of diseased states. In the United States, health systems do not even calculate outcomes or profits by how well people get but by the volume of services and technologies delivered (Porter and Teisberg 2006). Volumetric conceptions and risks of disease eclipse therapeutic potentials.6 The loss of recovery as a moral (and even economic) domain of potential reflects the motives and professional ethics of medicine that are at present too narrowly conceived in terms of delivery of services and management of disease. Left unchecked, the impermanence of obligation (toward recovery) generates intensely complex—and largely unseen—sociomedical realities that may adversely affect more people. This diminishment of therapeutic potential is not only structural; it takes concrete ethnographic form. In this chapter’s second case, such diminishment inevitably becomes part of a physician’s professional skill set as external, commercial pressures come to define the value of a doctor–patient interaction.7 I am interested in how patients fare in situations where

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health professionals can exhibit wide latitudes of action or inaction or indifference and how patients and families instantiate, through one-on-one confrontation, senses of obligation: a right to recovery that they perceive to be encompassed within their rights and duties as patients. How do the sick themselves bargain for the sick role and medical obligation within nonoptimal medical settings where strategic misrecognition or dangerous nonneutrality can prevail? How do they re-create some form of therapeutic complicity between all interested parties that the concept of the sick role generally aspires to? Few cases are successful, but, strung together, I hope they tell a story about potential, not only of the inherently social nature of medical technologies or access to them but also—more centrally—of the inherently social indeterminacy of recovery in contexts where medical technologies are largely available but where the sick role is missing. Most of the medical and paramedical experts encountered here form the core of a tragic plot structure—nonrecovery—involving a misrecognition of their patients’ desire for care or a devaluation of the “expected value of their patients’ futures,” among other things.8 I make a distinction between a right to medical goods on one hand and a right to health and a right to heal on the other. This is because what constitutes a medical good can be vague.9 As such, a medical agent can provide medical goods (such as clinical trials) but “comfortably” not commit to a patient’s recovery. In his Poetics, Aristotle (2005) suggests a way of thinking about potential vis-à-vis tragedy. Potential is a plot or narrative arc that heightens the power of “structure and incidents” rather than “spectacle” to achieve a desired effect. The incidents he refers to are not self-contained dramas but more like increments of recognition that accumulate along “a spectrum between seeing and blindness.”10 Those increments include “halfunfolded” disclosures to false inferencing and “blind seeing”—all of which can block critical discoveries (Merback 2012). I track potential here in terms of how the expected value of patients’ futures is formulated, rises, or is lost within various medical encounters, and I track the potential for injury that can go largely unchecked in the absence of a mitigating force. I also track how patients lose and reclaim their identities as careworthy subjects in the global and experimental contexts in which I worked. I am interested in what Sharon Kaufman (2013) calls the “cultural work of potentiality”: to carve out a conceptual space for a form of recognition that can address—and hedge against—evolving spaces of medical neglect or unintended tyrannies. In this chapter’s last case, I explore the case of a man whose severe genetic disorder is not “recoverable” within the public-health system because the medicines are far too expensive. His participation in a clinical trial for a high-cost genetic therapy is followed by a traumatic post-clinical-trial experience in which he reluctantly litigates for his “right to health.” I explore the insurgencies of this patient who demanded care, as well as those of his clinicians, whose power to heal they perceived to be literally taken away from them by chaotic commercial and institutional forces they were just learning to recognize. To be sure, potentiality operates as a moral category that can fail patients; it is the failure of recognition that moves the tragic script of nonrecovery along. Potentiality is

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also a moment when telling increments combine, when idiosyncratic social knowledge of very real and desperate experiences accumulates and can push medical actors beyond the constraints of predetermined ethics or laws. Potentiality is thus about how this knowledge becomes coincident with a new structure of recognition in medicine, even virtue. This “becoming coincident” is what I take an anthropology of potentiality to be looking toward: a horizon in which a different kind of truth, objectivity, and outcome can become actual and operational. Turning to the first case, I show how other kinds of horizons can quickly appear in the absence of mitigating conceptual or institutional investments.

“ I D O N ’ T S E E PAT I E N T S , I S E E D ATA”

In the early 1990s, an unprecedented space of opportunity opened up in Poland and for Poland’s health-care workers such that up until the mid-2000s, Poland and the rest of Eastern Europe would occupy a major share of what is known as the global clinical-trial market (Petryna 2009). Available technical expertise, English proficiency, and high rates of certain untreated disease as well as centralized public-health systems that could more easily become functional clinical-trial platforms meant that drug companies would annually invest almost half a billion dollars each in clinical research in Poland (a country with one of the lowest shares of public expenditure on health in the Organisation for Economic Co-operation and Development countries). Trials for everything from hypertension treatments to high-risk surgical techniques moved to Poland and other Eastern European countries, providing data for drug approvals from the U.S. Food and Drug Administration or the European Medicines Agency while transforming public health care in these countries into an ever-greater mosaic of private-sector involvement and mounting patient demand for new drugs. Dr. Jiri Stanek, a Czech public-health specialist I interviewed in 2006, was a clinicaltrial market insider and an expert on how such markets rise and fall. He got his start in the early 1990s by turning ailing but centralized public-health systems into nominally functional clinical-trial platforms.11 “For companies it was cheap. They got good data quick. There was a need for services, and all of a sudden Western companies realized the huge potential here. Our population was not treated by remedies that were available in the West. So it was all quite attractive. We had many untreated populations. There were treatment-naive, steroid-naive, statin-naive people—people you could hardly find in the U.S. or Western Europe. We had extremely high recruitment rates,” he told me. Trials had become so pervasive, particularly in cardiology- and oncology-related services, that by the end of the 1990s roughly 30% of expenditures on oncological treatment in Polish hospitals were covered as part of a clinical-trial program.12 Yet Stanek also hinted that each stage of developing clinical-trial markets involved an unscripting of patients from their roles. He pointed out that clinical-trial subjects as a general rule are only “temporarily loyal,” and that after a while “they no longer see the immediate benefit

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in participating in trials.” For example, he mentioned that pools of “steroid-free asthmatic children are starting to get exhausted a little” in the Czech Republic. At a point of increased competitiveness for the right kind of patients and investigators, and when state regulators show signs of less flexibility, he said, “[i]t simply becomes too expensive for us, just like in the United States, Western Europe, and Canada.” Moving between corporate and scientific offices in the United States and research and public-health sites in Poland and Brazil, I documented the organizational cultures of industry-sponsored clinical research, probing scientific, ethical, and regulatory practices from the perspective of national regulators, corporate sponsors, trial workers, and monitors as well as public-health physicians and scientists who were being recruited to do clinical-trial work. As I tracked how clinical-trial markets rose and ultimately fell, I observed the complex ways that commercial medical science, with all its benefits and risks, was being integrated into local health systems and emerging drug markets. Neither the language of coercion nor that of rational choice could fully capture the range of value systems at work in medical experiments today. Questions of posttrial treatment access and long-term care were often left unaddressed in an ever-expanding global market of health. As markets for research moved eastward and southward, the ethics of placebo research were being hotly debated. I observed as industry actors scrambled to learn from U.S. regulators about the legal enforceability of guideline documents (such as the Helsinki Declaration) and found ways to continue using the placebo (Petryna 2005).13 A placebo is an inactive treatment made to appear like real treatment; it amounts to no treatment. During the time of my research, I observed how debates over its appropriate use, particularly in resource-poor settings, began to focus narrowly on the “ethics of research” and the role of the researcher—as opposed to, for example, challenges to the therapeutic role of the physician in these settings. In spite of these ambiguities, a U.S. regulatory requirement to test new drugs using a placebo control remained a key factor driving clinical-trial globalization, and U.S. Food and Drug Administration regulators remain committed to the placebo for scientific reasons (although they would be increasingly marginalized by their regulatory partners in Europe). As justifications for placebo use butted up against reality (most Americans who are sick generally do not want to be on the placebo arm of the study), many placebo-controlled study protocols originating in the United States “floated” to other countries, where there were people, according to industry and U.S. regulatory reasoning, who were willing to enter a placebo-controlled study. The industry expansion of placebo research proceeded as if there were a world of willing subjects, as if there were something completely obvious about how patients, no matter how poor or untreated, “consented” to trials, let alone placebo-controlled trials in which patients faced the possibility of not receiving treatment but just a sugar pill. Working in the field with clinical-trial experts, I learned that such consent did not come spontaneously; it had to be engineered. Therapeutic expectation was manipulated; therapeutic obligation became negotiable; sick roles were untethered and at times sacrificed.

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Dr. Henryk Król, an experienced human-subjects recruiter in Eastern Europe, was one such expert “shredder” of therapeutic expectation and obligation. Like Jiri Stanek, he was a public-health physician in a former life and led his firm’s expansion across Eastern Europe. Joining him on a trip to Moscow, where he would carry out surprise inspections of his company’s trial monitors that were supplied by a local company,14 he recounted to me an enterprising, but ethical, way in which to enlist untreated patients for a placebocontrolled study: “We all know that it is unethical to withdraw treatment from patients during a trial. If a patient can get the required treatment where they live, then we certainly cannot withhold treatment or use the placebo. But for a patient with a newly diagnosed condition—say, hypertension—withholding treatment is ethically justified. That is because you cannot put the second patient immediately on the medication anyway. It is totally acceptable to wait and see if, say, the patient’s hypertension can be controlled by nonpharmaceutical means.” A patient can be treated “through diet, less salt, exercise,” he added. This lifestyle-treatment approach—which could be positive in its own right—was a mere stepping-stone to remaking a hypothetical hypertension patient into a placebo subject. The recruiter’s task here is to identify people who are in a “window” of nontreatment. But that window, as Król suggests, must be engineered. In this window, patients will be diagnosed and told about their condition. They will learn about a new treatment that is available elsewhere but is unaffordable for them. Finally, they will be told that they would have a 50% chance of getting the treatment if they sign up for the trial. Here consent is culturally reoriented toward the pharmaceutical and toward a patienthood that is yet to be realized. A therapeutic potential is manipulated to facilitate consent and for the project to conform to ethics standards with respect to “autonomy.” Yet for Król, the moment of informed consent is also the moment when patients are fully informed and fully exposed to the realities of a high-cost-pharmaceutical market that excludes them. The intriguing process through which a person comes to “voluntarily” consent to participate in a trial is not easily observed here. In this “ethical” recruitment, populations, either by intention or by default, can be reconfigured as “fair game” in global research structurally different and dislocated from normal, anticipated, or nonutilitarian paths of expected care. As this case shows, although ethics may be suited to protect subjects in trials, they may not be suited to protect patients in trials. It also shows that a pro-placebo regulatory push for creating “exceptions” to the best-care standard overinvests physicians (turned researchers) with powers to define that standard and to redirect the therapeutic desires of patients toward settling for a second-best option, understood as the trial, and thus propagating therapeutic misconception and thwarting patient roles toward some other, utilitarian market end. These incremental steps toward exposure are implied in Król’s ethics of what “we all [presumably] know.” In other words, and to invoke Aristotle’s sense, we are “seeing blind.” The words of one of Król’s colleagues—“I don’t see patients, I see data”—are echoed in the blind recasting of the patient role as data to be captured, transferred, or

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manipulated. In what follows I turn to Brazil, a country that has seen considerable growth in its clinical-trial markets and where I explore how patients attempt to reinstate “sick roles” (often via the judiciary, as we will see) following their exposure to trials, all the while challenging an impermanence of obligation in medicine and its legal, market, and ethical justifications.

“ TA K E C A R E O F M E ”

Inês kept saying to me, “I am a number, I am just a number there.” She is a fifty-fiveyear-old Brazilian mother of four daughters who for the last decade has suffered from an untreatable and often fatal lung disorder (a type of pulmonary hypertension) that is resistant to current treatments. Once she learned that her breathing difficulties were linked to this particularly rare disorder, she was able to find a specialist through a network of family and friends. Inês tried the standard plan of medical care, but it did not work for her. To help with her symptoms, she took five other medications. In 2008, her pulmonologist invited Inês to participate in a clinical trial for a new medicine for someone with her exact medical condition. Knowing that Inês was a “good” patient (she was reliable and compliant), the doctor pressed Inês hard to join the trial, which he told her would be of benefit to her medically. The trial had a placebo arm. And, after much discussion in her family, Inês decided to join the trial because she “trusted the doctor,” she told me. For the first three months, the study was double-blind, meaning that no one, including the patient-subject and the physician-researcher, would know who was on the placebo and who was on the active arm. After three months, patients would learn who was getting what. Complications began to arise. Inês, the once-trusted patient, stopped taking the experimental pills that she had been given. “The doctor chastised me. He told me that I couldn’t come back to the clinic with all these leftover pills.” Every pill Inês took or didn’t take was counted. “I told my doctor that I am taking too many pills already, a diuretic, a heart pill, a high blood pressure pill, I can’t take any more pills!” Her doctor responded, “If you are going to skip any medicines, skip the ones you are taking now, not the experimental one!” I realized in the course of our discussion over unconsumed pills that she was staging a “noncompliance” as a way of leveraging the doctor’s care and commitment to her wellbeing—to reinstate a doctor–patient relationship. Inês continued to be a “deviant” subject in exchange for having “given up” her sick role. But when she discovered (given her palpable improvements) that she was probably not on the placebo arm, she understood that she may not have a sick role to return to, in part because of the overwhelming cost of the medicine she was being tested with. As she told me, “I asked the doctor, ‘What happens to me afterwards? Who is going to take care of me? I’ll take your pill only if you guarantee that I will get it after the trial ends.’ ” Faced with disappearing avenues of care, her question rises to a level of quiet revolt. In his short story A Country Doctor, Franz Kafka ([1919] 1997) describes a hapless doctor

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whose values are controlled by other, unknown, and unnamed forces. He is called one evening to attend to a boy in the countryside who is suffering from a fatal stab wound. The physician reluctantly arrives at the boy’s home and without much of an examination tells the boy halfheartedly that he will be fine. Sensing betrayal, family members shove the doctor into the same bed as the patient. Next, the sick boy whispers searingly into the doctor’s ear: “Do you know . . . my faith in you is very limited. You have been shaken off from somewhere, you have not come here on your own two feet. Instead of helping me, you make my deathbed more narrow.” Stories of narrowing deathbeds and withholdings of obligation suggest the pressing need for a less morally costly and more obvious set of rights of recovery to be born. In the first (Polish) case, sick roles are thwarted while therapeutic hopes are manipulated; in the second, these same events occur but with possibly more dire outcomes. And finally, here in Kafka’s story, one reaches a point at which the patient ceases to be medicine’s reason for being and becomes its very reason for nonbeing. Importantly, Inês did not want to use the legal options afforded to Brazilian citizens (i.e., suing the state to provide medicine) as a hedge against such dire, Kafkaesque prospects. Many physicians in Brazil are encouraging patients who lack access to newly tested technologies to “judicialize” their case. Inês used the expression entrar na justiça—“to enter the judiciary” (or, literally, “to enter justice”)—to refer to this process. However, cases can take years to resolve. Most defendants ask for temporary court injunctions, and if those are granted, they can receive treatment immediately. They can also be trapped in an endless cycle of requesting new court injunctions, depending on the judge. Already in the third stage of her pulmonary disease, Inês felt that “judicializing would surely take me into stage four.”15 She held a narrative of the “morality” of her own recovery—of what would be lost (time, energy, hope, health) in the maelstrom of “judicialized disease” and the increasingly smaller increments of what was to be gained (dignity, a future, family and political belonging)—in the struggle for her right to stay in the sick role along recovery’s perilous path. Medical obligation is a “thought-style” (Fleck 1981), with active legal and ethical norms. Today its parameters are shaped by a host of differently invested political agents entering the field of medical provisioning with a certain readiness to provide “life-anddeath” rulings. Left unthought are the terrifyingly vague institutional assignments of ultimate responsibility for the sustained recovery of patients such as Inês. The hypothetical lawsuit that she did not file most likely would have ended up at her local public defender’s office (where the majority of the lawsuits requesting medicines from the state travel) and in the able hands of one very fiercely committed public defender, Paula Pinto de Souza, who stated, “By the time an ill person gets to me, all [her] vulnerabilities are exposed; the cure is most likely no longer possible. . . . This is the ‘medicine’ that I practice here.” As her comment suggests, healing becomes a moral act for patients who have been overly exposed to the impermanences of medical obligation. But why did we have to wait so long for healing to be moral? What can act as a mitigating force to such overexposure?

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Even where there is universal health care, as in Brazil, seemingly rational processes of prescription butt up against—and fall apart in the face of—serious obstacles to the harnessing of a medical system’s therapeutic potential. The long struggle for universal health care worldwide, particularly in the United States (Starr 2011), is a case in point. After the Second World War, President Harry S. Truman advocated for a single-payer universal health-care system. Yet vehement opposition by the American Medical Association scuttled the plan, and the United States ended up with a tiered system of private health insurance, welfare services for other qualified groups, and vast pools of the uninsured. As the above public defender’s words suggest, even universal health care will not solve all problems of disease. Quality medicine inheres in relations and is itself subject to moral and literal deterioration (Kleinman 2009). Curiously, it was in the fraught moments of aborted universalization in the United States that Parsons conjured the “total interaction of being sick.” The sick role, one could argue, became a conceptual prescription of sorts for “deviance control” in modern medicine as well as a reminder of medicine’s sociocurative obligations.16 Even American economist Kenneth Arrow (1963), a contemporary of Parsons, gestures to the sick role as a normative ideal in a leading economic paper of the postwar era, “Uncertainty and the Welfare Economics of Medical Care.” Acknowledging his indebtedness to Parsons, Arrow warned of the encroachment of market principles in health care—namely, in doctor–patient relations—and deploys aspects of the Parsonian ideal as a kind of moral corrective to “asymmetric” biomedical power. With “informational asymmetry,” as he called it, Arrow warned of physicians becoming merchants of a growing stock of biomedical information, using information to “please customers” (1963, 950) rather than socially reintegrating the sick in the Parsonian sense. Arrow referred to the ills bound up in this informational asymmetry as “moral hazard.”17 In such a system, he argued, “the risks of gaps in medical knowledge and skill are borne primarily by the patient, not the physician” (1963, 967; italics mine). In analyzing some of the clinical-trial environments in which a similar information asymmetry rules, I have seen that ethical standards have not been enough to eliminate such moral hazard but have only provoked it. In the cases I have shown, physicians, like Kafka’s country doctor, may have knowledge of the proper deed but “leave it undone.” Arrow (1963) hoped that new social institutions “in which the usual assumptions of the market are to some extent contradicted” could “create guarantees of behavior which would otherwise be afflicted with excessive uncertainty” (967). Here the problem of the sick role was not that it was too fixed or inflexible, as some of its sociological critics would hold.18 Rather, it was not scripted enough to eliminate the moral hazard stemming from asymmetric biomedical power. To be sure, an unbearability of “excessive uncertainty” plagues Inês and is buried in her passionate plea, “Take care of me.” Her plea poses a series of other empirical questions linked to such excess and how to insure against it. How do patients—be they in a clinical trial, part of a struggling household, or members of a litigant and activist group—gain a

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sense of value of their own participation in the broad political economy of health? How do they resist sacrifice (of themselves or of others) as a predominant political strategy of health-care access? How do they engage chances of recovery as both medical and political realities? Like Inês, the following case involves a patient who sets the terms for what defines the sick role, medical compliance, and rights of access and recovery. It also shows how practices that legitimate disease as a manipulable potential can change as a group of physicianresearchers confront the hazards of impermanent obligation and reassert their healing role.

AT T E M P T E D E X I T

Inacio Santos is a fifty-six-year-old former bank employee and public servant residing in a small town in Brazil’s interior. I met him in 2008 in the Center for Clinical Genetic Excellence at a large hospital in the capital of the southern state of Rio Grande do Sul, where he traveled bimonthly to be medically monitored and to receive clinical care and support from a group of talented clinical geneticists. Since adolescence, Inacio suffered from a rare genetic disorder that had for years gone undiagnosed. The disease is merciless. According to one clinician, “Patients complain of extreme pain and numbness in hands and feet. They usually survive into adulthood but they are at an increased risk for strokes, heart attacks, and kidney failure.” Moreover, symptoms of the disease are not age dependent: “A twenty-five-year-old might suffer from end-stage renal failure; a forty-fiveyear-old may just be starting on hemodialysis.” Often patients have gone undiagnosed because the “disease is unknown to many physicians. Many times, their complaint of pain is brushed off as psychosomatic.” That was fortunately not the case for Inacio. Before coming to this center of genetic excellence, Inacio was under the care of a private endocrinologist in his hometown who took an active interest in his case and provided him with symptom relief and palliative care. Inacio spoke admiringly of him: “When I had the money, I paid, and when I didn’t have it, he saw me anyway.” Once Inacio landed a steady job as a public servant, half of his medical expenses were paid. Not knowing what disease Inacio had, the doctor “taught me how to live with the disease” nonetheless. The day he figured out that Inacio’s affliction had a genetic root and no known cure, he referred him to the Center for Clinical Genetic Excellence, a key referral center, which biotechnology companies coveted as a site for multinational studies in the area of enzyme-replacement therapy. When I met him, Inacio was in the midst of navigating a medical and legal quagmire. The clinical trial he had diligently participated in had been stopped abruptly by the sponsors. With the sudden withdrawal of the study drug, he ran the risk of quickly relapsing to a physical state that was even worse than when he began the trial. The cliniciangeneticists who had initially enrolled him were desperate to figure out some institutional recourse so as to continue Inacio on the experimental therapy and to protect him from any damage that was sure to come in its absence.

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In the past two decades, biotechnology companies have increasingly innovated in the field of orphan-disease treatments, always breaking new ground (Petryna 2009). For these companies, Brazil was ground zero for testing and market making as companies incorporated the country’s constitutional right to health and active judiciary as a path to getting the country to purchase these treatments for its universal health-care system. Indeed, statepurchased high-cost medicines now make up a formidable market in Brazil. Inacio’s trial, sponsored by a U.S. biotechnology company, tested the safety and efficacy of a new therapy for the disorder of which he was now experiencing the advanced stages. Inacio was an ideal candidate for the trial as defined by its protocol’s strict enrollment criteria: his renal disease was advanced and never treated. In earlier-stage trials, the therapy had proven to be somewhat successful in stopping the progression of renal failure, and so from both a study protocol and a patient perspective, it made good clinical sense for Inacio to be in the trial. All who knew Inacio considered him to be a highly compliant patient and trial subject. He was motivated to live: “At my age, most people with the disease were already dead or had killed themselves,” he told me. Yet while his seasoned clinicians were excited about the possibilities of finally offering their patients something more than just an accurate diagnosis of their genetic ailments, they were also extremely cautious about hyped claims of efficacy. “It is a new world,” said Dr. Maria, an innovator in palliative and rehabilitative care. And if the drug worked, there would be other problems: “I think we are bringing new things from genetics to Brazil’s universal health-care system. But to guarantee treatment access and to follow up on the effectiveness is very problematic.” Clinicians told me that the experimental drug worked well for Inacio; in fact, his renal disease markedly improved, and the drug’s clinical efficacy for this patient was absolutely clear. But its effectiveness—in the real world Inacio was living in—would be a whole other matter. The sponsor, who had agreed to provide medication for two years, withdrew the study drug midway through the trial. The clinicians who worked closely with Inacio learned about this “right to withdraw” too late. Much to their dismay and horror, they discovered that a clause stipulating the sponsor’s right to withdraw the drug at any time was written into the consent forms that the patients signed or fingerprinted. This “right,” they learned, apparently was a last-minute concession that the trial sponsor had extracted from the center’s director, who thought that it was better to concede rather than risk losing important resources that the trial would bring. The reason for the withdrawal was market related: a company representative hinted to the clinicians that Brazil was too slow in registering the drug for countrywide sale. Company lawyers actually instructed patients about how to sue the state for treatment access and encouraged them to form a patient-activist group to pressure the government to buy the needed drug. (Its cost is roughly two hundred thousand dollars per patient per year.) Here therapeutic potential is engineered to mobilize vulnerable people as leverage for the pharmaceutical industry. This effort failed. Later, I learned that the company running the trial had been sold. Whatever had led to the withdrawal, clinicians knew that their advanced-stage patients’ conditions would deteriorate owing to the lack of the drug.

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One sad irony in this story so far is that although the drug had worked well for Inacio, he did not know himself how well it actually had worked. Owing to protocol, Inacio could not be told. In his self-assessment, he complained of raised stress levels: “I know that when I began treatment, I only had the problem with swelling. But now I have hypertension too.” As he made sense of his new medical and legal challenges, he asked himself questions: Should he go home and live out his normal life span? Should he wait, in hopes of another company stepping in to run other trials? Should he instead press his case in an attempt to make the government pay for an unaffordable drug? One of the five subjects who participated in the trial moved to another research unit in another state; two were starting to file legal suits against the state of Rio Grande do Sul; and one, according to the subject’s clinician, called weekly, “asking whether we have gotten the therapy.” As the interests of clinical research, public health, and biomedical markets swallowed up Inacio’s disease and body whole, he tried his best not to be overcome by the drive to have the drug at all costs. In fact, Inacio was never drawn to the hype of a cure when he enrolled in the trial. He explained his reasoning as follows: “What is research? It is something that can turn out right or not. It is risk. All in life is risk. I understand that quite well. And I decided to enter the study. The die was cast.” I asked him whether the enzyme had improved the quality of his life. His answer: “I have survived. I made a choice to enter the study. I could have chosen not to do anything, and maybe I would not be talking to you today. But there is no way I can know the actual impact of the study. . . . We exposed ourselves to the drug without knowing if it was or was not going to work. Some benefits the company had. We didn’t die.” He told me that the only document he remembered signing said “that I was not responsible for paying the bill for anything. For two years they even provided me with a full tank of gas.” In case the treatment worked, “those patients who were willing to continue were told they were going to have continued treatment until they died.” Inacio and other patients couldn’t understand how a company had been allowed to begin a trial and could now be exempted from the legal responsibility to provide the treatment. With his life precariously tethered to a new medical commodity, who was responsible for Inacio’s treatment access? Who would pay? How was he actually doing medically? All were open questions. His disease was mapped and capitalized on in all kinds of ways except for the recovery way. Yes, I am using a very low bar here; by recovery I mean restoration to his pretrial state of disease. His case was being lost in the cracks of a clinicalresearch enterprise whose ethical labor was divided, one that shifted risks to those who were not necessarily in a position to flag them. Like Inês, Inacio resisted becoming a patient-litigant at first. In fact, he said he was ashamed of taking on that role. Finally, when he joined a class-action suit against the state, the question of Inacio’s treatment was temporarily settled when the highest court in the state of Rio Grande do Sul, through majority opinion, required the drug maker to continue providing the treatment to those who did not have the means. The drug maker, sensing an impending media scandal around these patients, finally conceded and provided treatment for some patients.

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When I spoke to him recently, Inacio told me he was hard of hearing and had experienced five small strokes in the past three years. His physician was helping to organize his medical paperwork to obtain back taxes that were owed to him because of his disability status. His disease had progressed far more rapidly than those in his cohort of clinicaltrial subjects. Of the five patients in the trial, three were now obtaining their medicines directly from the manufacturer, and two were receiving it from the government.

CONCLUSION

In diverse settings, the project of health has progressively been displaced from the clinic and the doctor–patient relationship to precarious paramedical settings that themselves enact distinct moralities that limit patients’ access to the sick role only to privilege some other role (such as trial subject, activist, patient-subject, or patient-litigant). As this essay shows, there is nothing certain in the doctor–patient relation as the legal and economic bases for dispensing or triaging care and ethical rationales for withholding treatment unleash their own kinds of hazards. At stake is how patients, the un-reflected-on collective in these settings, make sense of these conflicting values and enact therapeutic potential and a politics of recovery not only in clinical but also in juridical and experimental settings. The sick, perhaps like never before, are being confronted with the full cost of their survival. At the same time, recovery has become much more idiosyncratic and unpredictable or much less guaranteed or calculable. In Brazil, for example, information about right-to-health rulings for individual patients is not traveling up the state administrative chain to effect systemic political change or create a sense of permanence of obligation. The same cases can be litigated and relitigated so that rights never get bureaucratically fixed. Recovery from disease, actual recovery—which involves continued access to proper medicines and unbroken care or access to state health guarantees—entails new problems that are beyond biomedicine but that also pose challenges to its ethics, expertise, and scope. Inês’s and Inacio’s “expertise” suggest ways that the sick must summon the sick role within nonoptimal medical settings. The fine-grained social realities of patients on whom the burden of recovery lies and their subjacent sociopolitical worlds beg for analytic attention that would allow for such people-centered evidence to add up and matter publicly beyond the rhetoric of human rights or individual consumer choice. If the mastery of the “social interaction of being sick” was staged largely within the confines of an ideal doctor–patient relationship, today the fields in which patients enact that social interaction in order to obtain care are far more complicated. It is striking that although Inacio’s initial therapeutic agent from the interior did not have any medicines for him—he did not even have a diagnosis—he did not lose sight of the cure: “He taught me to live with the disease,” Inacio told me. Such a “cure,” however, was an impossibility in the clinical-trial setting that gave him hope and even stopped the progression of his renal failure. But because of the impermanence of obligation written into the trial’s very

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protocol, his injury became the scene of a litigious public-health trial. And every professional around him, no matter how caring and capable or narrowly self-interested, became “complicit” in the mismanagement of his disease. The 12% higher death rate experienced by cancer patients among the uninsured means that they will have encountered a multitude of discriminations, sporadic treatments, or denials on their private and perilous paths toward therapeutic potential. More stories can be told about how this all adds up to untold percentages of thwarted recoveries. In politicized fields of transnational medicine, as in the United States, recovery remains somewhat of a black box: a kind of afterthought, highly arbitrary, individual, and even idiosyncratic. This essay illuminates why this may be the case and shows that the burdens of impermanence and high medical costs are shifted to individuals who may or may not be successful in demanding or negotiating care. The real-life phenomenon of patient recovery entails much more than a right to access medical goods or a right to health; it entails a right to exit from disease. The social and political fabrics of Inês’s and Inacio’s attempted exits speak to the morally ambiguous uses of therapeutic potential that blocked their way.

N OT E S

This chapter appeared originally in Current Anthropology 54, no. S7 (October 2013): S67–S76. www.jstor.org/stable/10.1086/670720. 1. See “Ezekiel Emanuel: Ethics of Healthcare” (YouTube video, 1:03:04, https://www .youtube.com/watch?v=HKJY0riwlMo). 2. On the concept of pharmaceuticalization, see Biehl 2007a and 2007b. On the judicialization of the right to health, or the widespread adjudication of medicinal claims in courts, in Brazil, see Biehl and Petryna 2013 and Biehl et al. 2012. On global clinical-trial settings as a crossroads for the twin phenomena of pharmaceuticalization and judicialization, see Biehl and Petryna 2013 and Petryna 2009. On the different roles patients take on, such as that of client, see Whyte et al. 2013. For an analysis of pharmacists as key therapeutic agents and the consequences for health, see Das and Das 2006, Ecks and Harper 2013, and Kamat and Nichter 1998. 3. For other theoretical and empirical explorations of clinical trials in broad contexts, see Abadie 2010, Dumit 2012, Fisher 2009, Geissler and Molyneux 2011, Nguyen 2011, and Sunder Rajan 2007, among others. 4. See Fassin 2011, Feldman and Ticktin 2010, Redfield 2013, and Samsky 2011, among others. 5. Parsons understood this not as a dyadic doctor–patient relationship but as a triad that also included the family. 6. For a critique of the volume-based mind-set, see J. Y. Kim and M. E. Porter, “Redefining Global Health Care Delivery” (unpublished manuscript). On a discussion of the sick role and its “death” in U.S. medicine, see Burnham 2012. Social scientists have poignantly moved caregiving out of the neglected corners of biomedicine to show its true ambit. See Kleinman 2010, Livingston 2012, Mol 2008, Taylor 2008, and Han 2012, for example.

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7. On such latitudes, see Petryna 2007; Petryna 2009, chap. 3. For an exploration of the moral perils of doctor–patient relations in a context of commercialized health care, see Kleinman and Hanna 2008. For other explorations of the moral perils of doctor–patient relations in a postdisaster context, see Petryna 2002. 8. I adapted the phrase “the expected value of their patients’ futures” from the brilliant essay “Obstacles to the Perception of Change” by development economist Albert Hirschman (1971, 341). 9. I found this in my work on global clinical trials in which access to trials was often conflated with access to medicine (Petryna 2009). 10. On the nature of tragedy in Aristotle’s concept of recognition, see Merback 2012. 11. I employ pseudonyms throughout this essay. 12. With the rush of clinical-trial programs and financial capital, governments eventually caught up with the new practices. With different degrees of success, they fostered a culture of regulation, compliance, monitoring, and auditing—all the capability that was necessary in hosting transnational commercial research. 13. They had a strong incentive: placebos lower costs, and many argue that placebo trials produce better evidence. 14. Monitors ensure proper documentation of informed consent and trial procedures and create an audit trail. They are critical to insuring the inflow of finance capital and the outflow of products (data) from new or untested research areas. 15. Indeed, treatment disbursements may be stalled through the state pharmacies. As a result, treatments are interrupted, compromising adherence and health outcomes. Some people die before a final decision is reached. See Biehl et al. 2012. 16. Social scientists for many years have critiqued the sick role as facilitating unchecked biomedical authority; its inherent focus on deviance control places too much blame on patients when they do not recover. Lost in the notion of “secondary gain” in which a patient “chooses” sickness over health for a variety of reasons is a broader sense of the sociopolitical fields and actors that limit health. We could not have so vast a literature as exists today on “noncompliance” if it were not for Parsons’s analysis. 17. Indeed, in the debate over U.S. health reform, progressive economists drew on Arrow’s work on information asymmetry and moral hazard to critique the workings of a purely profitdriven health market. They saw that informational asymmetry was at the root of moral hazard, allowing for a nonoptimal and even predatory “social interaction of being sick” (in which the insured use health care even when they are not sick) to evolve. Another facet of moral hazard is revealed when insurance companies take advantage of this situation by increasing the cost of insurance (high premiums) to insured groups, thus driving up the cost of health insurance for everyone else. Such “predatory” processes linked to information asymmetry insure that someone will be driven out of the insured pool. See A. Petryna, unpublished manuscript; and Brief Amici Curiae of Economic Scholars in Support of Defendants, 2010, State of Florida, by and through Bill McCollum, et al., Plaintiffs, v. United States Department of Health and Human Services, et al., Defendants, Case no. 3:10-cv-91-RV/EMT. For a different take on informational asymmetry in terms of power differentials and the importance of knowledge flows in global health, see Feierman et al. 2010.

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18. Within midcentury medical sociology, Parsons’s structural-functionalist approach to health-care systems and his theory of the sick role were the subjects of considerable debate. For example, he took multiple empirical questions—for example, the decision to seek care or the obligation to comply—and made them normative. The work of several scholars shifted the field’s gaze from the macrolevel “social system” to microlevel individual social interactions (Conrad 2007; Hafferty and Castellani 2006) and developed complex notions of patienthood that can partly account for the novel illness experiences above. In particular, Anselm Strauss, Erving Goffman, and Eliot Freidson—three prominent mid-twentieth-century sociologists trained at the University of Chicago in the school of symbolic interactionism—each took dayto-day interactions between individuals as a point of departure for their sociological work on patienthood.

REFERENCES

Abadie, Roberto. 2010. The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects. Durham, NC: Duke University Press. Aristotle. 2005. Poetics. Translated by Ingram Bywater. Stilwell, KS: Digireads.com. Arrow, Kenneth. 1963. “Uncertainty and the Welfare Economics of Medical Care.” American Economic Review 53 (5): 941–73. Biehl, João. 2007a. “Pharmaceuticalization: AIDS Treatment and Global Health Politics.” Anthropological Quarterly 80 (4): 1083–1126. ———. 2007b. Will to Live: AIDS Therapies and the Politics of Survival. Princeton, NJ: Princeton University Press. Biehl, João, Joseph J. Amon, Mariana P. Socal, and Adriana Petryna. 2012. “Between the Court and the Clinic: Lawsuits for Medicines and the Right to Health in Brazil.” Health and Human Rights 14 (1): 1–17. Biehl, João, and Adriana Petryna. 2013. “Legal Remedies: Therapeutic Markets and the Judicialization of the Right to Health.” In When People Come First: Critical Studies in Global Health, edited by João Biehl and Adriana Petryna, 325–47. Princeton, NJ: Princeton University Press. Burnham, John. 2012. “The Death of the Sick Role.” Social History of Medicine 25 (4): 761–76. Canguilhem, Georges. 2008. “The Normal and the Pathological.” In Knowledge of Life, translated by Stefanos Geroulanos and Daniela Ginsburg, edited by Paola Marrati and Todd Meyers, 121–34. New York: Fordham University Press. Conrad, Peter. 2007. “Eliot Freidson’s Revolution in Medical Sociology.” Health 11 (2): 141–44. Das, Veena, and Ranendra Das. 2006. “Pharmaceuticals in Urban Ecologies: The Register of the Local.” In Global Pharmaceuticals: Ethics, Markets, Practices, edited by Adriana Petryna, Andrew Lakoff, and Arthur Kleinman, 171–206. Durham, NC: Duke University Press. Dumit, Joseph. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham, NC: Duke University Press. Ecks, Stefan, and Ian Harper. 2013. “Public-Private Mixes: The Market for Anti-tuberculosis Drugs in India.” In When People Come First: Critical Studies in Global Health, edited by João Biehl and Adriana Petryna, 252–76. Princeton, NJ: Princeton University Press.

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Fassin, Didier. 2011. Humanitarian Reason: A Moral History of the Present. Berkeley: University of California Press. Feierman, Steven, Arthur Kleinman, Kathleen Stewart, Paul Farmer, and Veena Das. 2010. “Anthropology, Knowledge-Flows and Global Health.” Global Public Health 5 (2): 122–28. Feldman, Ilana, and Miriam Ticktin. 2010. In the Name of Humanity: The Government of Threat and Care. Durham, NC: Duke University Press. Fisher, Jill. 2009. Medical Research for Hire: The Political Economy of Pharmaceutical Clinical Trials. New Brunswick, NJ: Rutgers University Press. Fleck, Ludwik. 1981. Genesis and Development of a Scientific Fact. Chicago: University of Chicago Press. Geissler, P. Wenzel, and Catherine Molyneux, eds. 2011. Evidence, Ethos, and Experiments: The Anthropology and History of Medical Research in Africa. New York: Berghahn. Hafferty, Frederic, and Brian Castellani. 2006. “Medical Sociology.” In 21st-Century Sociology: A Reference Handbook, vol. 1, edited by Clifton Bryant and Dennis L. Peck, 331–38. Thousand Oaks, CA: Sage. Han, Clara. 2012. Life in Debt: Times of Care and Violence in Neoliberal Chile. Berkeley: University of California Press. Hirschman, Albert. 1971. A Bias for Hope: Essays on Development and Latin America. New Haven, CT: Yale University Press. Kafka, Franz. (1919) 1997. A Country Doctor. Prague: Twisted Spoon Press. Kamat, Vinay R., and Mark Nichter. 1998. “Pharmacies, Self-Medication and Pharmaceutical Marketing in Bombay, India.” Social Science and Medicine 47 (6): 779–94. Kaufman, Sharon R. 2013. “Fairness and the Tyranny of Potential in Kidney Transplantation.” Current Anthropology 54, suppl. 7: S56–S66. Kleinman, Arthur. 2009. “Caregiving: The Odyssey of Becoming More Human.” Lancet 373 (9660): 292–93. ———. 2010. “Caregiving: The Divided Meaning of Being Human and the Divided Self of the Caregiver.” In Rethinking the Human, edited by J. Michelle Molina, Donald K. Swearer, and Susan Lloyd McGarry, 17–31. Cambridge, MA: Harvard University Press. Kleinman, Arthur, and Bridget Hanna. 2008. “Catastrophe, Caregiving and Today’s Biomedicine.” Biosocieties 3 (3): 287–301. Livingston, Julie. 2012. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham, NC: Duke University Press. Merback, Mitchell. 2012. Recognition: Theme and Meta-theme in Northern Renaissance Art. Princeton, NJ: School for Historical Studies, Institute for Advanced Study. Mol, Annemarie. 2008. The Logic of Care: Health and the Problem of Patient Choice. New York: Routledge. Nguyen, Vinh-Kim. 2011. “Trial Communities: HIV and Therapeutic Citizenship in West Africa.” In Evidence, Ethos and Experiment: The Anthropology and History of Medical Research in Africa, edited by Paul Wenzel Geissler and Catherine Molyneux, 429–44. New York: Berghahn. Parsons, Talcott. 1951. The Social System. Glencoe, IL: Free Press. ———. 1975. “The Sick Role and the Role of the Physician Reconsidered.” Health and Society 53 (3): 257–78.

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Petryna, Adriana. 2002. Life Exposed: Biological Citizens after Chernobyl. Princeton, NJ: Princeton University Press. ———. 2005. “Ethical Variability: Drug Development and the Globalization of Clinical Trials.” American Ethnologist 32 (2): 183–97. ———. 2007. “Experimentality: On the Global Regulation and Movement of Human Subjects Research.” Political and Legal Anthropology Review 30 (2): 288–305. ———. 2009. When Experiments Travel: Clinical Trials and the Global Search for Human Subjects. Princeton, NJ: Princeton University Press. Porter, Michael, and Elizabeth Teisberg. 2006. Redefining Health Care: Creating Value-Based Competition on Results. Cambridge, MA: Harvard Business Press. Redfield, Peter. 2013. Life in Crisis: The Ethical Journey of Doctors without Borders. Berkeley: University of California Press. Samsky, Ari. 2011. “ ‘Since We Are Taking the Drugs’: Labor and Value in Two International Drug Donation Programs.” Journal of Cultural Economy 4 (1): 27–43. Starr, Paul. 2011. Remedy and Reaction: The Peculiar American Struggle over Health Care Reform. New Haven, CT: Yale University Press. Sunder Rajan, Kaushik. 2007. Biocapital: The Constitution of Postgenomic Life. Durham, NC: Duke University Press. Taylor, Janelle. 2008. “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly 22 (4):313–35. Whyte, Susan Reynolds, Michael A. Whyte, Lotte Meinert, and Jenipher Twebaze. 2013. “Therapeutic Clientship: Belonging in Uganda’s Projectified Landscape of AIDS Care.” In When People Come First: Critical Studies in Global Health, edited by João Biehl and Adriana Petryna, 140–66. Princeton, NJ: Princeton University Press.

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15 JUST LIVING Law, Life, Livelihood, and Sexual Assault

Sameena Mulla

“I just want to live.” I replay and listen to these words once more on my digital recorder. The recorder captures the rasping textures of the wind and the husky sound of Rachel’s voice as we sat at the end of a dock in a Baltimore suburb.1 On that warm, breeze-swept afternoon, we discussed her future. Rachel was one of four local sexual assault victims I had been interviewing about their experiences of making a formal report, undergoing a medico-legal forensic intervention, and interacting with police officers and prosecutors who were handling her case. I had first met Rachel in 2004, about a week following her forensic examination; she saw a flyer about my research project and contacted me. We had been meeting to talk, run errands, share meals, and spend time together every two weeks. Over the past few months, Rachel had shared many details with me about her uncle’s attack against her. Though like many other victims, she deliberated for a day or two over making a formal report, the rape eventually drove Rachel to the police. In the days that followed she had adopted a range of strategies to normalize her day-to-day life while negotiating the impact of intrafamilial sexual assault on her evolving kin relations (Mulla 2014a). With her birdlike frame, narrow shoulders, and skinny arms, Rachel seemed to me to embody a youthful vulnerability. No doubt my perception of her fragility was enmeshed in my research interests and my knowledge that Rachel’s life had recently been marred by violence. The lake by which we sat was carefully man-made: regular in its shape, with a shore of concrete that seemed more curb than coast. Between the docks, there were benches spaced evenly at the water’s edge, though we always preferred to sit at the end of a

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particular dock. Though heavily manicured, the setting was not without its charm and comfort. This was a favorite spot for Rachel, and she frequently suggested that we drive to the dock for our interviews. There, with water on three sides and the shore almost a hundred feet away, we often sat to talk. This afternoon Rachel was telling me that she had called the Office of the State’s Attorney and requested that they suspend the sexual assault charges against her uncle. “Are you disappointed?” she had asked me after making her announcement. When I shook my head and responded quietly, “Of course I am not disappointed,” she told me she just wanted to live. “I just want to live. I just . . . want . . . to live.” When I listen to the recording, I hear how the cadence of the second utterance is slower and measured. At the time, it was also accompanied by Rachel’s gesturing, by hand and head, to the world around her. Her arm swept in the lake, the sun, and the benches one at a time. Each sweep emphasized her words, almost as though she was swearing by each of the elements toward which she gestured. As our conversation took on the loping qualities of the afternoon, we discussed how Rachel had come to the decision to make this request of the prosecutor handling her case, as well as where and how Rachel wanted to spend her energies and attention in the months ahead. As was my custom, I allowed Rachel to lead the conversation where it would, and for the next forty minutes she returned again and again to the subject of work. After the frenzy of the past few months, Rachel was ready to get to work. It had been one month since she had found a job at a popular food chain. She was working long hours at the store, and had recently opened a bank account in which she was beginning to save a little bit of cash. “I love my work. I just love it,” she told me. These sentences are also repeated periodically throughout the recording of our discussion. Each time, they are uttered emphatically and with conviction. I asked her to elaborate: “What do you love about your work?” “It’s just simple is all,” she answered. “I go in, and clean and do whatever, and run the register. And it’s like I’m good at it. I just love it. I wear a uniform. I love it.” I toggle back and forth between the separate instances of repetition: “I just want to live.” “I just love work.” “I just love it.” “I just want to live.” I hear these utterances contiguously, as one can with the handy manipulations of the digital recorder. I string these utterances together like pearls on a string. They are tied together by the wind, by the warmth and weight of Rachel’s voice, and by the energy she pours into her declarations. I find myself considering not simply the repetition of her desire to live, her love for her job, but her repeated inclusion of the modifier just. And though it is through my own manipulation that I am able to reverse the order of words in her utterances, I begin to wonder whether what Rachel is telling me is not that she wants to live simply and simply to work. Rather, she is sharing with me what it means to her to live justly. In my work with sexual assault victims, it is evident that from the very early moments of making a formal report, justice is at stake. The justice that is at stake is not simply in the formal institutional procedures that are initiated by making a report to the police, like the medico-legal sexual assault forensic examination, the prosecutor’s decision to charge

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(or not), and any formal case disposition through the progress of a legal trial. If anything, the formal disposition of criminal trials in the criminal justice system is quite predictable, with police, forensic examiners, crime lab personnel, and prosecutors fairly well apprised of high case attrition rates and the low likelihood of prosecution in any criminal case, particularly in sexual assault felony cases (Frazier and Haney 1996; McMillan 2010; Spohn and Tellis 2012). Among all of those who participate in the sexual assault intervention, it is, perhaps, the victim who is least familiar with the most likely trajectory of the formal process that her complaint has set in motion. As time passes and the possibility of a trial and a formal resolution to the criminal justice process grows less likely and more remote, victims’ talk frequently turns toward voicing a different notion of justice than what the court of law might make possible. As the days and months following the initial report grew, Rachel and the others I worked with spoke less frequently about the formal legal proceedings while increasingly seeking to work through and deepen their relationships to a more quotidian justice that might permeate their daily lives. The kernels of desire for this type of justice, what I term here “just living,” are found even in the early moments of reporting a crime and making a formal complaint of having suffered sexual assault, even during the medico-legal sexual assault examination. What, then, is “just living”? What are the many layers of meaning that Rachel and the other men and women with whom I worked describe, inflect, and deploy when they invoke the term “just living”? One obvious component of just living that Rachel describes with deep desire is a daily life in which she can live without the immediacy of violence. To just live is to put aside, or from time to time delight in forgetting, or not remembering, and even to carry on outside of the shadow of violence and its consequences. It is an ideal, perhaps unattainable, of a life unconscripted by the harm of others. When Rachel describes just wanting to live, she clearly indicates that she means to do so without having to suffer her uncle’s attacks. She would often say that she did not want to talk to her Uncle George any more. “I just don’t want to deal with him or that part of my family,” Rachel would often say. Other victims I interviewed often expressed similar sentiments toward individual perpetrators, wishes that the perpetrator was no longer a part of their life, or that the threat of violence was somehow neutralized. A moment free of worry or unconscripted by the harm of others may be a moment in which the subject can shed the weight of structural and historical subjection; so argues Didier Fassin in an article that engages the ethnographic significance of resentment and ressentiment (2013). To take such worries seriously, anthropologists must recognize them as an instantiation of the porous boundaries between moral, ethical, and political dilemmas. To make this move is to unite the reactive attitudes of the ethnographic subject with a political framework. What are the reactive attitudes of sexual assault victims, and what are the social and political contingencies marking such sentiments? The reactive attitude of sexual assault victims in Baltimore is what I term the desire for just living, characterized in part as a longing to forget, on occasion, the harm of others. In his response to Fassin’s

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article, Bhrigu Singh remarks that “intensities of pain may wax and wane, even as the injury is not ‘forgotten,’ ” while elaborating that forgetting, in the Nietzchean sense, “is not a form of erasure but a possible way of protecting oneself from the poisonous secretions of a wound” (2013, 263). In this sense, the desire to live justly in the wake of sexual violence may encapsulate a longing to be insulated from the poisonous secretions of the wound of sexual assault, particularly as it is suffered at the hands of one’s kin. Just living, however, meant more than simply living outside of the influence of the violence of an individual perpetrator. Threats to one’s life and livelihood did not emanate strictly from individual humans; many of the women and men in my study expressed frustration and insecurity due to their tentative economic and social position.2 Poverty and incarceration were characteristic concerns, and one was never sure how one would make a living, or whether one might continue to find oneself on the “right side” of the law—as one research participant phrased it. The instability of household composition and finances was, for many families, experienced in conjunction with the flow of family members in and out of prison (Das, Ellen, and Leonard 2008). Anthropology has certainly tracked the “cascade of violence and its effects along the social fault lines of society,” one of the many ways in which violent events are experienced as a multiplicity in everyday life (Kleinman 2000, 228). Ethnographically, anthropology might attend to these multiplications of violence by tracking how persons in distress voice more than their distress over the violent event that has just recently disrupted their life, but rather embeds such worries in their anxieties about their general welfare and circumstances. In my ethnographic work, however, it is not simply that to worry about sexual assault initiated a tailspin of worries about the multiple insecurities destabilizing the victim’s daily life. Rather, there is a particular way in which sexual assault is very directly implicated in questions of livelihood, legal subjectivity, and imagining the future. Livelihood and the ability to make a living were a major preoccupation in Rachel’s world. She was relatively young, had never graduated from high school, and had no immediate plans for or access to a college education. We met more than twenty times over a six-month period, and at every single meeting, without fail, she mentioned either the search for work or her success at finding work, and, eventually, her satisfaction with her job. Work is even a topic of discussion in Rachel’s descriptions of her encounters with Uncle George. Below, I return to an excerpt of an interview with Rachel that I have considered in other ethnographic contexts (Mulla 2014a). Here, Rachel describes how it is she came to try to reconnect with her paternal kin, and therefore Uncle George, following her uncle’s release from prison: r:

All right. My uncle—he just came home from jail the beginning of this year. This is my first time meeting him. Well, my mom said I met him when I was younger but I don’t ever remember meeting him. And my father wanted me to meet him. It’s my father’s brother. And me and my cousin went to meet him one day. And at first—

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s:

Where did you go to meet him?

r:

At my father’s house. At first—we got along, well, we always got along pretty good the couple times that I’ve seen him. And we had stopped talking because me and my cousin Violet—that’s like my best friend—me and my cousin we was supposed to meet him downtown. And he had us standing downtown for an hour and a half in the rain and he never showed up. So, I stopped talking to him. And he used to say little smart stuff to my cousin like, “Violet, you fat as I don’t know what. You look good. You look just like your mother and somethin’ somethin’ somethin’.” And one day I was sitting down there with him and I was like, “Uncle George, I need a job.” He said, “Well, what kind of job you need?” I said, “Any job, a job is a job it doesn’t matter.” He said, “What kind of stuff can you do?” I said, “I can type, I can do office work, waitress, cashier, I can do anything.” He said “Well, do you dance?” I said, “I can dance but I am shy around people so I am not just going to come out and dance.” And he was like, “Well, you can be a stripper.” So I just looked at him and he started laughing so I am sort of like, “Well, he is joking with me,” so I started laughing and joking with him. So we went back and I told my cousin about it and she called her mother and her mother was like, “You need to stay away from him because that side of your family is nothing but pedophiles.” Cause it’s a history of that going on my father’s side of the family. My Uncle George has a daughter named Lia. Their younger brother [Rachel’s father’s and George’s younger brother] got Lia pregnant. That’s his niece. So it’s been going on for a while. We have a couple people that’s in that family that’s molested—a couple men molested boys, young boys, and stuff like that. It’s crazy. And, well—

s:

Did you know this before, or is this something that you found out afterward?

r:

I found out that after I met him, but it was before this incident [of rape] happened. Because I wasn’t going to sit there and say, “Oh well, y’all got a history of raping people” ‘cause I never heard of my Uncle George doing anything like that. And this my first time actually getting to know that side of the family. I really don’t deal with my father like that. He hasn’t been in my life but I was trying to give him a chance. And, I didn’t want to just say, “Oh well, I don’t want to be around y’all.” I want to get to know them also. I know my mother’s side, why not get to know my father’s?

In this short exchange, Rachel begins by explaining to me her estrangement from her paternal kin, and how she recently made an effort to reconnect with her father and his family. In her speech, this connection is often proxied through the trope of talk. It is “talking to” that creates avenues for sustaining relationships. The more one talks, the more one inhabits a world of shared language. The efforts to talk constitute a gesture of forging family (Mulla 2011). The efforts to reconnect are not without complications. Each gesture seems destined to be paired with a setback. Soon after seeking to meet her uncle, Rachel and her cousin, Violet, were left waiting for him in the rain at an agreed-upon downtown rendezvous. This reflection is followed by Rachel’s comment that she and

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Uncle George “got along well,” but after her summation of her relationship with Uncle George, Rachel mentioned his remarks about the sexual appeal of Violet. Her tone on the recording is one of discomfort and repulsion. Uncle George’s calling Violet “fat” and “like your mother” fades into the unquotable “somethin’ somethin’ somethin’ ” that Rachel would rather not (or cannot) recall. As Rachel marked the inappropriateness of Uncle George’s comments, she then mentioned that she had appealed to him about her need for a job. Normative professional culture in the United States would certainly tout the merits of networking and marketing oneself to and through one’s personal and professional network (Lane 2011). By appealing to Uncle George as a potential resource for securing employment, Rachel is not unusual. Recently paroled himself, Uncle George is also seeking employment, and so Rachel sought to exploit any knowledge he may have had about potential opportunities.3 While George represented one part of her network that might serve and assist in her job search, other parts of her network were neutralized in that some family members, like her mother, were either currently incarcerated or facing imminent arrest because of outstanding warrants. Given that her prospects seem so limited by her experience and educational qualifications, she displays initiative in tapping into her network to find a job. Again, according to Rachel, the exchange focused on issues of employment: r:

And one day I was sitting down there with him and I was like, “Uncle George, I need a job.” He said, “Well what kind of job you need?” I said, “Any job, a job is a job it doesn’t matter.” He said, “What kind of stuff can you do?” I said, “I can type, I can do office work, waitress, cashier, I can do anything.” He said, “Well do you dance?” I said, “I can dance but I am shy around people so I am not just going to come out and dance.” And he was like, “Well, you can be a stripper.” So I just looked at him and he started laughing so I am sort of like, “Well, he is joking with me,” so I started laughing and joking with him. (Emphasis my own.)

As Rachel enumerates those jobs for which she feels she is qualified, ranging from pink collar to service industry positions including typist, office worker, waitress, and cashier, Uncle George twists her request into a perverse and boundary-violating flirtation by asking her if she dances. In her account, she demonstrates a sense that she left a verbal opening for him to follow this line of talk. She needs “any job . . . it doesn’t matter.” Though she follows this utterance with a list of what type of work she thinks is suitable, it is simply the process of talk that provides Uncle George with the opportunity to turn the conversation. The turn the conversation takes is uncomfortable for Rachel. Rachel initiated the conversation because she needs to find work; her need for work in this case serves as the opening for Uncle George to recast Rachel from aspiring worker to potential stripper. Seeking to reframe the lewd nature of his comments, Rachel engages him with a gaze before coding the exchange as a joke and laughing off her discomfort.

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It is the seeking of a reliable job and a desire to make a living that here form the very basis of Rachel’s vulnerability. The difficulties of securing employment are complicated not only by Rachel’s lack of credentials, but also by her own criminal record. Though her sentence was reduced to probation, her criminal record presents an additional burden when she is seeking gainful employment. Given the challenges she overcame to find a job, Rachel’s satisfaction in her employed state is well warranted. Her satisfaction with finding a position, even if at a fast food restaurant far outside of Baltimore’s city limits, demonstrates the depth of her desire. The position required Rachel to uproot herself from her family home in the city, to depend on friends (or anthropologists) with cars to give her lifts when she did have business in the city, and to impose on the kindness of yet another friend who lived out in the suburbs and could give her a place to rest her head. Her new household was made up of only adult women and girl and boy children. While she liked her living situation, staying with this friend and her friend’s mother, what she liked most about her new household was its proximity to work. From the house, she could simply walk to her job and walk home. The bank at which she had opened an account was on the way. Rachel’s strategy for just living is tied to a newly established and short circuit between work and home. In the suburbs, she is away from her family, her younger brother, her infant half-brother, her stepfather, and her mother, to whom she says she is deeply attached. She is also at a distance from her estranged paternal family, including her uncle, who originated the violent act that most recently set her world on its head. Even the evolving court case had presented an entanglement, requiring her to modify her work schedule and find a ride, most often from me, from the suburbs to the downtown location of the Office of the State’s Attorney. Choosing to withdraw her own participation from the criminal justice proceedings allowed Rachel to maintain the closed and predictable nature of her home-to-work circuit. As I have stated earlier, victims’ impulses to return to work and secure a livelihood are apparent even during the very early moments of sexual assault intervention. The most common form this concern or desire takes is in the modest request for a note from the nurse making an excuse for missed work. It was not uncommon for victims, even in the throes of deeply felt emotion and heightened distress, to ask pointedly that they receive a note or some official hospital documentation for their employers to show that they were good workers who had not skipped work. Such a request was almost routinely made during the weekdays, and even, at times, on the weekends. The careful management of small administrative tasks, such as requesting proper documentation, indicates that while one may be in the midst of a crisis, it is imperative to secure one’s future in employment if one is to make a recovery. Alternately, one’s imagination of recovery is tied to a future in work. In addition to requests for administrative assistance for their efforts to return to work, other victims narrated a set of events that located the risk of sexual violence in their work (or the need to work) itself. One victim I attended was a despondent taxi cab dispatcher who described how one of the drivers had taken advantage of the isolated and solitary

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nature of the dispatch station to rape her in the middle of the night. As she expressed her shock over how terrifying and disgusted she felt, she also wondered whether her boss would make trouble, because she was under the impression that her boss held dispatchers to be more easily replaced than cab drivers. “And I always take the overnight shift because that’s when I can switch off with my husband, so that’s not going to change,” she lamented. The need to take overnight shifts to support oneself and one’s household would not end as a result of experiencing violence. Work, a necessity, might remain a continued source of risk. Another victim, Laura, a former medical professional and now shopgirl whom I have written about at length (Mulla 2014b), had lost her job following a devastating divorce. Her work had formerly been quite well paid, and had afforded her the freedom to finally leave her abusive husband and make her own living. When the hospital she worked for laid her off, it was quite a blow, and for almost a year, the only steady employment she could find was working the sales floor of a high-end women’s retail clothing store. Although this was not a job that called on the professional training she had worked her whole career toward, at the moment, the job provided some stability and assured Laura she could pay her mortgage and take care of her other bills. It was one of her coworkers—another sales staffer, who had wormed his way into Laura’s home, claiming he had locked his keys in his car and could not recover them until the next morning—who plunged her life into deeper disarray. Hearing that he had a long commute home, Laura had offered him a place to stay for the night. Once in her home, he had attacked. While Laura wondered what would happen to her coworker and whether he would be held responsible for what he had done to her, she also expressed her lack of certainty about how work would proceed: “I mean, until things are settled, how will my manager swing this? Will she schedule us for different shifts? I mean, will I have to see him?” Laura’s narration of sexual assault is itself the second episode in her struggles with sexual violence. Earlier in her life, she had an abusive husband, from whom she separated with some difficulty. Her professional achievements were part of the reason she was able to escape his violence, and had guaranteed her stability and independence. As she had lost her employment and been propelled into a different working world, her life was further destabilized by the violence of her coworker. For two other victims that I saw, it was not work itself but its inconvenient location that led to violence. Tonya and Leda were both sexually assaulted on their way to and from work; the assailants in all cases were hack drivers or hack passengers. A “hack” is the local parlance for an unofficial taxi cab. Private drivers frequently pull over and accept fares for transporting people around town. The fares are significantly cheaper than those of an official taxi cab, and even if one insisted on taking only a regulated taxi service, cabs are not easy to find in all neighborhoods and at all hours. Leda had been sexually assaulted not once but twice, by two different hack drivers in separate incidents roughly one month apart (Mulla 2008). She was living, with her two children, in a domesticviolence shelter well outside the city. The shelter was the only one that had room for her and her children. Her job, a well-paying professional position, was in Baltimore. There

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was no public transportation to speak of, so Leda depended on hacks to get to and from work. Most of the time she made the commute without incident. Like Laura’s, Leda’s experience of victimization is embedded in a life history of escaping one type of sexual violence—in this case, that of an abusive husband—only to face another. Her commitment to secure a living for herself and her children also constitutes the risk she faces as she struggles to get to work every day. Leda’s victimization twice in one month generated suspicion from the forensic nurses, who have a shadowy awareness of women’s economic vulnerability but are quick to mischaracterize it within a framework of criminality. Many of the nurses began suggesting that Leda was involved in transactional sex, and that rather than being a victim of rape, she was simply a poor woman who had bargained to exchange sex for a ride and had come to the emergency room when the hack drivers, whom they cast as johns, became violent. This interpretation hinged on ignoring Leda’s second trajectory to the emergency room, to which she had been admitted for attempted suicide and not as a rape complainant. It was only when they learned that she had attempted suicide following the second rape that the emergency room staff paged the forensic nurse and asked Leda to make a formal complaint (Mulla 2008). Like Leda, Tonya had been catching a cross-town hack in the city to return home from her job (Mulla 2014b). Although city buses did run late into the night, they were very slow. In addition, whereas north–south routes near the center of the city ran with regularity, traveling east–west routes often involved depending on very intermittent routes and multiple transfers. Catching a hack was much more convenient, and would insure that Tonya got home in time to relieve her babysitter. Usually, Tonya had the cell phone number of a hack driver she used regularly, but since he was not responding to her this evening, she was left with no other option than to flag down an unknown hack. The hack driver picked up two additional passengers on his way to Tonya’s drop-off point. These two passengers— like the driver, both male—convinced the driver to pull over in a parking lot and look the other way as they dragged Tonya from the car. The driver left the scene. Tonya mentioned that he was bribed: the other passengers cut a deal with him so that Tonya’s preexisting deal with the driver was somehow arrogated. Here again, the complex economies of risk and harm are aligned with gender such that a woman alone is denied her standing within the contractual relationship between driver and passenger. Her contract is commandeered by the sweeping power of the greater economic resources of the two male passengers, who can offer the driver the drugs and cash that will compel him to look the other way. The added dynamic of gendered alignments between male passengers and a male driver can also be understood as compounding Tonya’s risk. The driver and the passengers do business, and it is Tonya herself who becomes the commodity for which they trade. When I layer the voices of Tonya, Laura, Leda, and Rachel into a multitextured concatenation, what contours of just living come into sight? Part of the descriptive work that these women do is to produce a negative definition of justice, one narrated in their accounts of injustice. The sexual aggression and exploitation by men—some who are strangers, others family members, and still others coworkers—forms the backbone of the justice denied to

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the women here. Would-be perpetrators reside both within and beyond domestic space; abusive husbands, coworkers, and uncles are disruptive forces, both like and unlike strangers. To escape from such men sometimes requires women to gather enough economic force to enable them to exercise choices where the opportunity to make a choice exists. Economic force requires a reliable income, and thus the women are thrust back into the circuits of masculine care and violence, where their economic interests collide with (or compound) their vulnerabilities. To escape the violence of the known—the abusive husband, for example—one must face the violence of the unknown in the figure of the hack driver or the strange men he picks up, or a coworker one does not know very well. Or even the inconvenience and the risk of accepting shelter at a location far away from one’s source of income, which requires a woman to subject herself to the risk of the unknown driver who may or may not choose to honor his contractual obligation to give her a ride for an agreed-upon price. Injustice is then a world in which one’s word is not one’s bond, and men can dissolve contracts at whim, with devastating consequences for women. Both Tonya and Leda narrate tales in which informal contracts in which they negotiate for safe transport from one location to another are dissolved or arrogated to others in the blink of an eye. For Rachel, it is the negotiation of kin relations with a relatively unknown (but close) male relative that results in the exploitation of one’s relatedness and the possibility of sexual violence. Because the majority of incidents of sexual assault involve relatives and acquaintances (Black et al. 2011), the injustice of sexual violence is marked by the unreliability of the sexual contract. A gendered notion of just living imagines a world in which the sexual contract is always in place, and conditions for upholding the sexual contract felicitously align with the social contract (Pateman 1988). Outside of the city, with her job within walking distance and her home free of adult men, Rachel’s world can settle, if only for a few moments, into the rhythms of just living. In her simple uniform—dark trousers, a button-down shirt, name tag, and visor—Rachel has slipped into a livery that marks her as part of the ordered landscape. As time passes, her weeks will fill up with more hours on the job. The return to work stands in for a contract between employer and employed, one that Rachel hopes will be honored. The duration of the honoring of the contract will be measured in the slow accretions of the bank account: as the deposits trickle in, the balance will attest to the enduring nature of Rachel’s state as contracted labor. The uniform is donned every day, and washed and pressed from time to time. Every time she puts on the uniform, the effect is the same. Rachel is on duty, in place, a vital though interchangeable part. Her uniform can be filled by a man or a woman, her role at work occupied by either since she is not performing a deeply gendered labor. In fact, her pride at how well she mops, hauls garbage to the dumpster, and offloads heavy food deliveries from the weekly shipments that come by truck points to a rather different gendered sensibility—one that is far from those sensibilities that Rachel associates with “stripper” and other forms of sexualized gendered labor. As we were sitting on the dock in the manufactured suburban idyll, I wondered if Rachel’s attachment to this place and time was a neat utopian projection of social order.

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When she gestured to the elements surrounding us, seeming to swear by the lawn, the evenly spaced trees and benches, and even the manmade lake, her desires for just living bodied forth as the homogeneous predictability of the world we inhabited in this particular moment.4 That we could not see beneath the lake’s surface—or glimpse behind the curtain, so to speak—to see how the grass, benches, and “coastline” were maintained left us only a suburban topography upon which to project the sensibility and desire for just living in the here and now. This present that Rachel had worked so hard to maintain was fleeting and evasive. It could easily be relinquished or invaded, or simply evaporate, but for the time being, its possibility was real. To live justly and to just live were always already to be far from the willful desires of men, any men. “Just living” unfolded in a world that required all critical guarantees to be honored, and the prison to be held in abeyance. “Just living” was the pause of satisfaction with one’s small (but regular) paycheck, the short walk to and from work, the sensation of pressing and slipping on a clean uniform, the safety of resting one’s head in a houseful of women, and the direction of one’s energies, if only for a while, into the labors of the self. N OT E S

1. All of the names in this work are pseudonyms. 2. As I will discuss in depth in this chapter, victims frequently voiced concerns about economic insecurity in both emergency-room and post-rape care settings. As I began my research in 2002, this was a full three to five years before the United States experienced a deep economic downturn. Although this downturn resulted in economic insecurity for the middle class, it was already deeply etched into the lifeworlds of the working class and the poor. 3. Being employed or actively seeking employment was a condition of Uncle George’s parole. This is common in the U.S. criminal justice system, and sheds light on the institutional view of the transformative power of labor and continued employment by ex-offenders who reenter society. Structurally, the problem of unemployment is exacerbated by the longer sentences served by prisoners, their lack of access to training and educational resources, and their returning to communities already burdened by high rates of poverty and unemployment (Bushway, Stoll, and Weiman 2007). 4. The term bodying forth references the picture of voice described by Veena Das in “Wittgenstein and Anthropology” (1998). In this and other works, Das suggests that Wittgenstein’s picture of voicing is always tied to the body in that the voice can never be imagined without the body. Voices, like Rachel’s, are thus enfleshed, and reflect utterances that neither can nor should be divorced from the flesh.

REFERENCES

Black, Michele C., Kathleen C. Basile, Matthew J. Breiding, Sharon G. Smith, Mikel L. Walters, Melissa T. Merrick, Jieru Chen, and Mark R. Stevens. 2011. National Intimate Partner and Sexual Violence Survey: 2010 Summary Report. Atlanta: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention.

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Bushway, Shawn, Michael A. Stoll, and David Weiman. 2007. Barriers to Reentry? The Labor Market for Released Prisoners in Post-Industrial America. New York: Russell Sage Foundation. Das, Veena. 1998. “Wittgenstein and Anthropology.” Annual Review of Anthropology 27:171–95. Das, Veena, Jonathan Ellen, and Lori Leonard. 2008. “On the Modalities of the Domestic.” Home Cultures 5 (3): 349–72. Fassin, Didier. 2013. “On Resentment and Ressentiment: The Politics and Ethics of Moral Emotions.” Current Anthropology 54 (3): 249–60. Frazier, Patricia A., and Beth Haney. 1996. “Sexual Assault Cases in the Legal System: Police, Prosecutor, and Victim Perspectives.” Law and Human Behavior 20:607–28. Kleinman, Arthur. 2000. “The Violence of Everyday Life: The Multiple Forms and Dynamics of Social Violence.” In Violence and Subjectivity, edited by V. Das, A. Kleinman, M. Ramphele, and P. Reynolds, 226–41. Berkeley: University of California Press. Lane, Carrie. 2011. A Company of One: Insecurity, Independence, and the New World of WhiteCollar Unemployment. Ithaca, NY: Cornell University Press. McMillan, Lesley. 2010. Understanding Attrition in Rape Cases: ESRC End of Award Report. Swindon, UK: Economic and Social Research Council. Mulla, Sameena. 2008. “There Is No Place like Home: The Body as the Scene of the Crime in Sexual Assault Interventions.” Home Cultures 5 (3): 301–26. ———. 2011. “Introduction to Forging Family: Legal Documents as New Kinship Technologies.” Law, Culture and the Humanities 7 (3): 352–58. ———. 2014a. “Sexual Violence, Law and Qualities of Affiliation: On Relatedness in Rape’s Aftermath.” In Wording the World: Veena Das and Scenes of Inheritance, edited by R. Chatterjee, 172–90. New York: Fordham University Press. ———. 2014b. The Violence of Care: Rape Victims, Forensic Nurses, and Sexual Assault Intervention. New York: New York University Press. Pateman, Carole. 1988. The Sexual Contract. Cambridge: Polity Press. Singh, Bhrigu. 2013. “Comment on ‘On Resentment and Ressentiment.’ ” Current Anthropology 54 (3): 263–64. Spohn, Cassia, and Katharine Tellis. 2012. Policing and Prosecuting Sexual Assault in Los Angeles City and County: A Collaborative Study in Partnership with the Los Angeles Police Department, the Los Angeles County Sheriff ’s Department, and the Los Angeles County District Attorney’s Office: Final Report. Washington: National Institute of Justice.

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16 “IF YOU REMEMBER, YOU CAN’T LIVE” Trauma, Insecurity, and the F/utility of “PTSD” in Haiti

Erica Caple James

In recent years Haitians have struggled to live with a seemingly unceasing chain of human-authored and natural disasters that have placed their nation’s most vulnerable populations in states of ensekirite (Haitian Creole for “insecurity”). The trope of ensekirite provides a metaphor for the lived experience of fear and anxiety provoked by quotidian risks. The mid-1980s through the mid-1990s was a period that saw the rise of human rights activism in protest of the Duvalier dictatorships (1957–86) and the election, exile, and then restoration of President Jean-Bertrand Aristide, who many thought would usher in an era of sustained peace and security. During this period of political turmoil, the term ensekirite began to be used to describe cycles of political violence that was directed primarily against the poor pro-democracy sector by reactionary military and paramilitary forces. More recently the term has come to signify the uncertainties of living with crime, multiple forms of violence, kidnappings, economic stagnation, environmental hazards, and other social precarities. During therapeutic work and ethnographic research I conducted between 1995 and 2000 among Haitians who were beneficiaries of a number of publicly and privately funded victim advocacy programs, I learned that the ontological uncertainties wrought by ensekirite were especially acute for those who were targets of organized violence. After the years of terror—between the September 30, 1991, coup that ousted the nation’s first democratically elected president and the October 15, 1994, restoration of democracy by the U.S. and UN Multinational Force—international and national governmental and nongovernmental actors worked to support the recovery and rehabilitation of both the

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nation and its citizens. In this chapter I suggest that the complex challenges that faced those who gave and received care during those years prefigure many of the struggles that individuals and institutions have confronted following the January 12, 2010, earthquake. During the 1990s (and now in unprecedented levels), humanitarian and development interveners attempted to reduce social precarities and repair the psychosocial ruptures that Haiti’s survivors experience between life and death, and between the living and the dead. International humanitarian actors intervened in the postcoup era to provide safety and security to populations that had been persecuted during the nation’s protracted transition to democracy. A plethora of new governmental and nongovernmental psychosocial treatment programs that the Haitian government was unable (and in many cases unwilling) to provide were inaugurated for Haiti’s “victims.” In the context of these reconstruction and rehabilitation efforts, the psychiatric diagnostic category posttraumatic stress disorder (PTSD) became an organizing trope influencing how many humanitarian and development interventions in Haiti were conceived. As I have described elsewhere (James 2010, 2011), a variety of individual and institutional interveners attempted to disseminate an understanding of “trauma” as defined within the Diagnostic and Statistical Manual of Mental Disorders (DSM) of the American Psychiatric Association and that conformed to the criteria of other Western nosological systems that categorize mental and emotional distress. In their interactions with Haitian viktim—survivors of human rights abuses who claimed victim status as a marker of their political identity—international and Haitian mental-health-care providers, and women’s- and human rights organizational staff members (among others), vernacularized and disseminated the concept of PTSD among their clients. The medico-legal framework through which these institutional actors documented and classified the material and psychosocial effects of traumatic suffering offered a means of transforming experiences intended to dehumanize and abase their targets into forms that could launch quests for justice and reparations. Amid an unpredictable climate of ensekirite, the programs that these actors inaugurated also created what I call purgatorial spaces:1 material spaces of security (or containment) outside everyday life or the normal social order in which caregivers introduce a set of therapeutic or “penitential” practices in order to instill moral dispositions and practices in recipients of care that can help relieve (and redeem) suffering. In Christian theology the concept of purgatory has been used to describe a liminal space (or condition) into which the souls of the dead who have failed to fully repent their sins are temporarily assigned in order that they may undergo purification prior to salvation. External actors may intercede on the soul’s behalf through prayer and other religious works. In temporal therapeutic spaces, facilitators encourage the confession of suffering and the analysis of traumatic experiences, and then prescribe practical modes of action to remedy pain and sorrow that in many respects can be considered penitential. Through such secular acts of discipline and penance, beneficiaries were “converted” from one social status to another and encouraged to repair ruptured relationships between the living and the dead.

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T H E P O W E R O F D E AT H TO S U B J U G AT E L I F E

Members of the coup apparatus inflicted upon their targets a style of violence that can only be described as necropolitical (Mbembe 2003). Through intimidation, detention, torture, killings, and “disappearances” of those persons deemed enemies, and by forcing their targets to engage in acts that violated moral norms (such as rape, gang rape, and forced incest), the terror regime mobilized the power of death to subjugate the living. As I discuss elsewhere (James 2008), these egregious acts ruptured bonds of kinship within the family. Many of the Haitians targeted understood the individual to be at the nexus of an extended social group that includes the living, the ancestors, and the lwa (divine spirits). The style of violence perpetrated inculcated in victims a status that resembles Orlando Patterson’s (1982) description of “natal alienation” and “social death” among enslaved populations. Alongside the destruction of material property (homes, movable goods, and items like personal identification papers), necropolitical acts dehumanized individuals, families, and whole neighborhoods during the coup years in Haiti. Violent campaigns perpetrated against activists and their families reduced many of them to a life more “bare” than the desperate conditions prompting their struggles for human rights, democracy, and economic justice in the first place (Agamben 1998). In addition to the physical damage inflicted upon the bodies of activists, their families, and the neighborhoods viewed as pro-Aristide, the disappearance of loved ones, and in particular the absence of the “corpus”—the material body of the living (or the presumed dead)—produced tremendous fear, anxiety, grief, and guilt among a number of survivors. An inability to observe kinship obligations to the living, and especially mortuary rites for the dead, was a cause of tremendous affliction for viktim with whom humanitarians worked. Some interventions aimed at ameliorating and redressing trauma inscribed or made legible the ineffable but enduring marks on the “souls” (de Certeau 1984; Foucault 1979) of individuals and families who were harmed through direct and indirect means by agents of the state and other parastatal actors. When tethered to a legal understanding of the violation of “human” rights, the concept of PTSD offered a secular moral discourse that laid blame for ongoing psychosocial suffering at the hands of state actors rather than in the survivors’ failure to observe norms of sociality and reciprocity in Haiti. In many cases, such discourses and practices of trauma remoralized individuals whose victimization had produced shame, isolation, avoidance of social interactions with others, and pervasive feelings of guilt and embodied fear (Frank and Frank 1991; James 2010; Kleinman 2006). But the processes by which individual and collective histories of suffering and ensekirite were rendered visible (and legible) also produced what I have characterized previously as “political economies of trauma” (James 2004). Haitian psychiatrists with whom I worked questioned whether the concept of posttraumatic stress was actually required to identify and treat the symptoms of patients living with the complex sequelae of egregious events: the categories of “depression” and “anxiety” were deemed sufficient.

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Despite such professional ambivalence about the necessity of a new diagnosis, both care providers and recipients quickly recognized that framing suffering through the language of PTSD was useful to gain recognition of their worthiness and status as political martyrs, as well as to gain greater access to humanitarian and development resources that circulated in this political economy. As will be discussed below, the adoption of the PTSD construct, particularly in individual and group psychotherapy sessions, created new subjectivities for Haiti’s victims that challenged conceptions of distress arising from “traditional” understandings of personhood and embodiment. The example of Christian Dieusibon demonstrates how the narration of “individual” traumatic experience through the legal framework of “human” rights could be therapeutic and empowering. At the same time, structured forms of confession reinforced the groups as purgatorial spaces in which clients engaged in penitential practices of self-reflection. In so doing, posttrauma rehabilitation programs encouraged a new manner of life and identity that transformed the so-called boundaries between the living and the dead, the political and the civil, the sacred and the secular, and between “tradition” and “modernity.” In other cases, however, discourses of trauma and the therapeutic practices offered to aid traumatized victims were inadequate to mitigate the ongoing challenges of living with ensekirite. The case of Odette Jean demonstrates that for many traumatized individuals coping with contemporary states of ensekirite, everyday life remains an unending struggle between past and present social ruptures into which specters of the past may irrupt, especially as Jean stated, “if one remembers.”

HUMAN RIGHTS AND CIVIL RIGHTS AS THERAPEUTIC DISCOURSES

In 1994, the Americas Development Foundation (ADF), a controversial private voluntary organization that had been promoting democracy abroad since the 1980s, began offering victim assistance with financial support from USAID through a program called the Human Rights Fund. Beneficiaries of the initial program were Haitian activists (militan) who had been targeted during the coup years. In 1997, former members of the Medical Unit of the UN Civilian Mission in Haiti inaugurated a new Victim Assistance Rehabilitation Program (the Rehab Program) within the Human Rights Fund (HRF, or the Fund). The program provided comprehensive medical, legal, psychological, educational, and social services. During the time of my research at the Fund (1997–2000), the Rehab Program’s therapy groups offered a space of security that permitted viktim to recount and reassess past traumatic experiences. The well-attended groups challenged a common perception among many Haitian mental health professionals that “talk therapy” was beyond the comprehension and capacity of poor Haitians and that psychotherapy is, therefore, unnecessary or superfluous. In my discussions and interviews with these caregivers, many expressed the view that the satisfaction of “basic needs,” rather than the exploration of psychosomatic conditions, was a priority for viktim. Negating such

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conventional views, however, was the fact that after the Rehab Program reduced the material benefits it was able to provide to beneficiaries, many of the Fund’s clients continued to attend the therapy groups in order to share their experiences with others and to give voice to their feelings of injustice and moral angst—in some cases attending after having waited several months to participate. Between fall 1998 and spring 1999, I participated in five biweekly therapy groups of four months’ duration to learn about the experience of viktim and to understand how attending the groups helped members live in the postcoup era. Psychiatrists, psychologists, and psychiatric nurses with whom I studied at the State University Hospital Mars/ Kline Psychiatric Center (between 1998 and 1999), “traditional” healers (practitioners of manual therapies, herbal medicine, etc.), lawyers, and others with expertise in aiding traumatized Haitians facilitated the sessions. One group had a psychological orientation: Rehab Program staff members had diagnosed the participants as suffering from prolonged somatic stress and other acute psychological symptoms and thought their clients would benefit from participation. A second therapy group had a legal counseling orientation: facilitators with medical and legal expertise advised participants on how to move from recounting stories of suffering to preparing for potential legal cases against their perpetrators. (This group seemed to be the most effective in enabling its participants to regain a sense of empowerment and agency to change their circumstances.) The third group was for women only; the majority of participants had been raped during the coup years. While the latter was intended as a support group, the information disseminated there was primarily in the form of reproductive health and nutritional counseling and was less focused on the devastating acts of gendered torture that had brought these women to the Fund. A fourth group focused on treatment methods arising from Haitian traditional healing modalities. A fifth group also had a psychological orientation.2 As each group commenced, Dr. Christine Thomas, a French ethnopsychiatrist who directed the Rehab Program, reiterated that the purpose of the sessions was for participants to “work” on the memories of the past (travay sou memwa).3 Although there was little implication that the beneficiary was expected to examine his or her own merits and faults—a practice characteristic of a purgatorial mode of self-reflection that recalls Michel Foucault’s (2007) description of pastoral power—the mode of therapeutic work occurring among beneficiaries and care providers possessed a “confessional” character (Nguyen 2010). Each participant was asked to recount the story of the traumatic events that led to his or her experience of victimization or that gave eligibility for beneficiary status, whether the events were experienced directly or indirectly. Fellow beneficiaries and facilitators acted as witnesses and supporters, but also provided constructive comments regarding action the narrator could take to improve his or her quality of life in the aftermath of trauma. Dr. Thomas stressed, however, that if a participant failed to recount the details of past experiences of human rights violations, the memories of the event or events would linger or stagnate inside them “like a poison in their minds.” Without engaging in this process of purification, the client remained trapped, as it were, in a

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purgatory of the body and mind. Thomas assured viktim that by verbalizing past experiences they would no longer have nightmares and intrusive recollections of traumatic events throughout their lives. Externalizing the details of private suffering and sharing them among a group of individuals who had suffered similarly would also reduce feelings of isolation and shame. The ultimate goal of the groups, however, was for each participant to adopt a subject position or identity that no longer was oriented toward or framed by “victimhood.” Because militan had become viktim by protesting conditions of abject poverty, political exclusion, limited educational opportunities, and widespread unemployment—and some discovered that victim status conferred secondary benefits through access to posttrauma rehabilitation programs—this task of remoralization and self-transformation prove challenging. Many viktim saw themselves as martyrs for the cause of democracy and wore that status as a badge of honor deserving of political recognition. The majority also continued to live with risk, uncertainty, and the dangers of ensekirite in everyday life. Viktim status provided a means of asserting claims for recognition, rights, and justice, not only upon the Haitian state, but also upon members of the international aid apparatus whose transnational institutions appeared to offer a kind of belonging that supplanted the negligence (and even predation) of either the Haitian state or foreign governments. For a limited time, these mobile humanitarian actors offered multiple forms of support and intervals of security and protection from the hazards of ensekirite. At the opening of each meeting, Dr. Thomas and the other therapy group staff members asked beneficiaries how the intervening two weeks had gone. The daily struggle for survival of self and family was a typical focus of the first part of the discussion. Then after each person had checked in, one or two viktim recounted the narrative of the events that had brought him or her to the Fund, so that by the third or fourth session most beneficiaries had had a chance to introduce themselves and to share their stories. Facilitators also discussed their own past experiences working with Haitians to promote human rights and health. Although participants had unequal power and authority, the meetings were not solely performances by beneficiaries for an audience of clinical spectators, but rather a group dialogue among people grappling to understand and move forward from diverse histories of trauma. The focus on individual experiences in the therapy sessions and a greater emphasis on past rather than present tribulations attempted to inculcate in participants a mode of purgatorial self-reflection. Many men in the groups displayed a common practice involved in public displays of masculinity by debating Haitian politics vociferously. However, the therapeutic staff decided to keep the focus on personal suffering rather than foreground the broader political and economic situation from which such experiences arose. To some degree this strategy countered the human rights frame through which the Fund operated and produced double binds for participants. Typically, HRF’s justice and human rights education programs acknowledged how individual beneficiaries were typically embedded in extended family networks. Indeed, an individual’s eligibility extended to his or her

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dependents, whether consanguineous or not. In the therapy group setting, however, the attention to individual experience encouraged the adoption of a subjectivity that may not have been customary for the participant, but that aligned more closely with predominant Western conceptions of human rights (An-Na’im 1992; Mutua 2001). Limiting discussions of the broader political and economic structures that contributed to victimization and focusing on individual trauma further engendered the transformation of militan into viktim. In the group with the psychological orientation, participants first recounted their trauma narratives and then were asked to describe the more distant past. Each was asked to respond to the question, Who were you before you became a victim? The question often provoked nostalgic and emotional descriptions of childhoods spent in the countryside, where “one could at least live and eat from the land.” These recollections of idyllic lives in rural areas were often nostalgic representations of the past: although less vulnerable to the waves of political and criminal ensekirite than was Portau-Prince, the provinces were generally acknowledged to be the poorest areas in Haiti and those least protected by the centralized state. In the stories that viktim told, however, life in the city was, by contrast, precarious, dangerous, and also unpredictable. Both men and women viktim told stories of leaving behind extended families and the routines of agricultural life to chèche lavi (search for life or a living) in the city only to be confronted with the “depravity,” “risk,” and “lawlessness” of life. During the coup years, many of them were forced to flee an mawonaj (into hiding)—a state of internal displacement that evoked the flight of slaves from plantations in Haiti’s colonial period—after having been subjected to threats, assault, and truly debasing treatment by affiliates of the extensive military apparatus. In some cases, viktim returned surreptitiously to the safety of their provincial homes. Being compelled to flee the city and seek security in a natal home compounded many participants’ sense of shame and humiliation; a number of them expressed feelings of failure or inadequacy at not being able to uphold expected obligations to support their kin. The question, Who were you before you became a victim? was also intended to encourage the participant to revive or recreate an identity that existed prior to victimization, a transformation of self presumed to have been provoked by an instance of “grave psychophysical threat” to the narrator or someone close to him or her. Focusing on a particular event that conferred viktim status reinforced contemporary understandings of PTSD that identify singular historical events or occurrences as the cause of trauma, rather than the routines of rupture characteristic of ensekirite. As I have elsewhere discussed (James 2010), a framework of “PTSD” that privileges the recounting of singular acts of “politically motivated” repression rather than an emphasis on the routine threats to economic, cultural, and social security paralleled contemporary emphases on promoting and protecting civil and political rights in human rights discourse. Although the framework of PTSD was not taught in an explicit way in these groups, facilitators emphasized that participants should work to transcend or leave behind a victim identity through this memory work.

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CHRISTIAN DIEUSIBON

The trauma narratives of some participants in the therapy groups did not solely convey feelings of anger at perpetrators of violence, nostalgia for the past, or laments for the loss of a public political identity as a militan; rather, viktim also expressed feelings of trepidation, anguish, and remorse for failing to honor kinship obligations to family, whether living or dead. As I have previously described (James 2008), the inability to perform expected mortuary rites for the dead provoked profound feelings of guilt and sadness, whether such losses occurred at the hands of human-authored or “natural” disasters. Anthropologist Alfred Métraux ([1959] 1972, 243) has written that regardless of the religion that Haitians observe (Catholic, Protestant, Vodou, etc.), Vodou funeral ceremonies are “always observed over every dead body.” Furthermore, Métraux asserts that “fear of the dead is such that their close relations would never dare, under any pretext whatever, to avoid those duties which custom exacts. Even the most destitute family does not hesitate to sacrifice its last pennies to ensure a proper funeral for one of its members,” since such rituals are linked to the soul’s fate in death (243–44). During the coup years, the parents of Christian Dieusibon, a young man who lived in the rural northwestern Artibonite department, were murdered. His father’s body was never found. Christian became the sole breadwinner and protector of his siblings and felt tremendous pressure in that role. But not only was it difficult to support the family, he had not yet been able to hold a funeral to lay his father’s spirit to rest. The impact of neglecting to perform such funerary rites could be profound: “The dead . . . have the power of bringing down a ‘punishment’ on the head of a guilty relative. This can take the form of illness or persistent bad luck” (Métraux [1959] 1972, 256). After we listened to Christian share his feelings of grief at the loss of his parents, angst from the new pressures of guardianship, and remorse over his failure to honor the dead, Dr. Thomas and a psychiatrist from the Mars/Kline Psychiatric Center proposed that he offer a “symbolic” funeral for his father to reorder the relationship between the dead and the living (mete an plas moun ki mouri ak moun ki vivan). Once he had completed the ceremonies, these caregivers suggested, both living and dead would be at rest (tèt yo pli trankil). Dr. Thomas also said that even in the absence of the corpus, the observance of expected mortuary rites would enable Christian to transform his own condition in life and move forward. The intent of the ceremony would not be solely about honoring the dead, but also about performing what can be viewed as a penitential act of restitution to repair the relationships with the deceased and, in so doing, to transcend the binds of “traditional” culture that seemingly contributed to his distress. Christian next asked whether the Fund still offered the burial assistance it had once provided to viktim during the coup years; unfortunately, this form of aid had since been discontinued. In the weeks following this meeting, however, he procured funding and material resources from members of the community in which he lived to offer mortuary rites for his father. (It was not clear whether such rituals were conducted with an effigy of

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the body or in some other manner.) At the group therapy meeting following these commemorative activities he expressed feeling relieved of feelings of remorse for not having yet been able to meet customary obligations to family and community. Although the malfeasance of state actors had prevented him from being able to “produce the body,” the rituals enabled both Christian and, presumably, his deceased father to make the transition from this purgatorial condition to another state of being. He later consulted with a lawyer to learn whether he might be able to mount a case (revandikasyon) through the Haitian judicial system. The complex psycholegal and sociocultural strategies that he pursued over the course of the groups contributed to a compelling comment he made at their closure. Before attending the Fund’s programs, he said, he “did not know that [he] was a person.” Through participation in the therapy group and with the communal support he received to honor the ritual obligations to the dead, he now recognized himself “kòm moun”—as a human being or as an “individual” in the Western sense—and as a subject possessing human and civil rights. Although in its focus on individuality this model of “modern” personhood challenged Haitian “traditional” conceptions of the relational self, it was not incompatible with them. Christian had undergone what can be interpreted as a process of conversion: after receiving human rights training at the Fund, he became a field agent and worked to identify and assist other survivors of organized violence living in the Artibonite region. Thus far, I have discussed how experiences of trauma are grounded in material and social losses and can be expressed as feelings of guilt because of an inability to properly mourn for, and lay to rest, the dead. In cases like Christian’s, the narration of trauma in a structured or circumscribed manner in contained spaces of security helped to remoralize the victim. In others, the intersubjective sharing of traumatic stories did not inculcate a sense of self and identity that necessarily transcended victim status. Many viktim endured the legacies of being targets of organized violence—psychosocial fragmentation and natal alienation—in contexts of chronic urban violence. In such contexts, some viktim interpreted the singular experience of victimization that made them eligible for beneficiary status as a part of routines of rupture occurring in daily life. In contexts of chronic ensekirite, explicitly religious interpretations of suffering and purgatorial practices of self-mortification helped viktim to put words around and mitigate the embodied experience of social precarity.

ODETTE JEAN

In February 1999, I interviewed Odette Jean, a fifty-eight-year-old woman, at “Chanm Fanm” (the Women’s Room), a women’s clinic at which I had been volunteering since its founding in March 1996 to provide physical therapy to rape survivors and other patients. Chanm Fanm was established in Martissant, a highly populated poor area southwest of the capital, through a partnership between Haitian and American women’s rights organizations. The goal of the clinic was to improve the health status of poor women in the area, and especially to support survivors of human rights abuses.

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In the small room where we worked, Odette told me her life story. The endemic violence in the Martissant neighborhood—a zone virtually ruled by armed gangs and beyond the capacity of the fledgling Haitian National Police force (established in 1995) to survey and protect—figured prominently in her tale of sorrow. A few days prior to our meeting, the body of a young man had been discovered in the mountains above the clinic. Odette learned about the killing from other women viktim who lived near the murder site in the Zòn (zone) Siyon, a section of a deforested mountain from whose heights was visible the densely populated capital and the bay below. During the coup years, the siyon, an open-air church, provided sanctuary to many internally displaced Haitians. In the postcoup period the mountain had become the permanent home of large families of squatters who resided in flimsy shacks and one-room cinderblock homes with corrugated tin roofs. Odette told me that the murder victim was the son of a close friend of hers. Gang members had drowned him in an oil drum that stored rainwater. The reasons for the killing were unknown. Because the suspected perpetrators lived in the same vicinity, neighborhood residents were too frightened to retrieve the body or to report the murder to the police. Eventually, two women viktim who were also my clients at the clinic reported the death to the police, and the young man was eventually buried. These events were extremely distressing for Odette because it reminded her of past ruptures when her own family members were attacked while living in the same neighborhood roughly eight years prior to our interview. Although devastating tropical storms had wrought changes in the topographical landscape, and a steady influx of Haitians from rural areas had transformed the neighborhood’s social space, her memories of tragic events had become unavoidable lenses through which she saw and experienced the zone. I had heard many disturbing stories about violent crime in Martissant during and after the coup years, and witnessed its effects on the women I saw at the clinic and at the Fund. The way that Odette recounted her story was in stark contrast to the semistructured narratives that the Rehab Program therapy groups encouraged and produced. Her words were hesitant, coming sometimes in fragments and then erupting into longer discourses on the recent murder. In disjointed elliptical phrases Odette would then describe feelings of shock that struck her at a bodily level (sezisman) and sentiments of resignation and lamentation for her losses of loved ones. A few words later, she spoke barely above a whisper about the recently murdered young man, and then gazed at a distance at a scene that I could not see. Because she seemed to be experiencing “intrusive memories,” I asked to use a semistructured diagnostic interview schedule (the ClinicianAdministered PTSD Scale) to provide a discursive framework through which to document the ruptures that had marked her family’s life in the city. Using a quasi-formal interview format, we attempted to record her life history. Throughout the interview, the events from 1990 were interwoven with the 1999 drowning of the young man. Odette’s journey paralleled that of many Haitians who left the provinces at a young age to seek a better life in the capital. After years of exploitation as a veritable slave

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(restavèk) in her stepmother’s household (her birth mother died when she was very young and her father died after remarrying), she escaped to the city at age sixteen. She worked as a maid, and found love—and then loss, when an unexpected pregnancy provoked her partner to abandon her and the unborn child. Without his help she could not pay for medical care for the delivery, and this lack of support had devastating consequences. After days of labor on her own, she was finally admitted to a public hospital, only to survive the birth of a stillborn son. After this tragedy she began life once again, this time as a madanm sara (market woman), and eventually, as the mother of five more children. Odette could not recall the exact date when her family was attacked but said it occurred prior to Jean-Bertrand Aristide’s inauguration in February 1991. Odette was living with her brother, sister, and sister’s children. Reactionary political forces in her neighborhood had pressured the family to vote against Aristide, but they remained loyal to the prodemocratic coalition. Then members of the civilian paramilitary killed one of her sons while he was out at a local market. Others stormed her house and gang-raped her daughter, who became pregnant. Another son was beaten senseless, but later fled the house, never to return. Odette was also beaten during the course of the attack. When she was able to escape, she fled to the mountains and ravines south of the squatter settlement. (It is possible that she ran while her children were still under attack, but I am uncertain of these details.) It was unclear when she returned to the area, but presumably after the October 15, 1994, restoration of constitutional democracy. Despite the promise to “uphold democracy” by military intervention, the U.S. and UN Multinational Force failed to disarm the coup regime fully, and many residents who were formerly subjected to repression had no other choice but to live in the same neighborhoods as these armed perpetrators. Upon returning to Martissant, Odette felt tremendous guilt about not being able to protect her own daughter, who had since abandoned a baby girl born from the gang rape. The little girl lived with another family in the neighborhood and knew that Odette was her grandmother. The girl sometimes asked her for food and care, but Odette’s destitute material condition, and, perhaps, ambivalent feelings about how the child came to exist, prevented her from aiding the girl. The disappearance of Odette’s son was most distressing. She had not heard from or seen the young man in almost ten years, and he was presumed dead. It was the lack of knowledge about the son who had fled that persecuted her and exacerbated her tansyon (literally, “tension”), a disorder of the blood that results from emotional distress. Odette described experiencing problems in her head (mwen gen pwoblèm nan tèt mwen) that the recent drowning of the young man had intensified. His murder reminded her of her own flight from the house during the coup years and of her inability to protect her children. Odette also told me about how she survived the insecurity of the zone by forgetting. She said, “If you remember, you can’t live.” The intrusive memories she experienced dominated her thoughts and were likened to blows to the head (frape tèt ou). Odette anticipated that these thoughts would eventually kill her. But her reflections on how she survived suggest that other kinds of purgatorial spaces and the practices inculcated in

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them may offer deliverance from embodied traumas. Odette had converted to Protestantism and attended a siyon, an open-air church in the mountains above Martissant, where several times a week Haitians made pilgrimages to worship together and seek divine assistance. As Paul Brodwin (1996) has described in his work on medical pluralism in Haiti, conversion to Protestantism is viewed as shielding Haitians from negative supernatural influences like sorcery. Perhaps religious conversion also protects the pious from the demands and afflictions of the vengeful dead, as well as the specters of the absent persons whose status as living or dead cannot be determined. Through faith in God, and by centering herself in the conversion experience, Odette felt she was becoming another person. She could not control or order the unpredictable risks of ensekirite in Martissant, nor had she been able to resume the economic activity that had previously brought her temporal successes. But by forgetting past traumas and blocking awareness of what could not be controlled around her, she coped with the violences of everyday life (Kleinman 2000). She exercised agency instead through her prayer practices and through self-mortification. By fasting on behalf of others, for Haiti, and the world, she experienced some liberation from the conditions around her and from her past. Odette’s story contains a chain of deeply distressing events, any one of which could provoke posttraumatic stress. Her strategies for survival challenge contemporary conceptions of PTSD that view systematic avoidance of situations and places that evoke traumatic memories as somehow pathological. Her tactics of building and maintaining hope—by centering life around religious experience, by attempting to heal others through self-sacrifice and mortification, and, especially, by deliberately forgetting the past—challenge trauma-treatment modalities that encourage direct engagement with traumatic memories. The January 12, 2010, earthquake killed more than two hundred thousand people, many of whom were buried in mass graves without customary mortuary rites for each individual soul. Nearly five thousand inmates escaped from prison facilities and remain at large (Pankhurst 2012). Some of these escapees have resumed careers as agents of the terror apparatus and have exacerbated ensekirite through violence, crime, rape, and intimidation of those inside and outside camps for internally displaced persons. While the nation continues the process of rebuilding infrastructure and lives devastated by the disaster, Haiti also grapples with a devastating cholera epidemic and the spread of other infectious diseases. It is imperative that international interveners, and their counterparts at the national and local levels in Haiti, continue working toward creating opportunities that enable the nation’s poorest citizens to meet their “basic needs” while also living amid secure social spaces. Numerous international organizations have also created programs to treat postearthquake “PTSD” (alongside other mental health conditions). These programs resemble, but are not identical to, interventions that were implemented during and after the 1991–94 coup years. The trauma treatment programs I observed and in which I participated in the

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1990s and early 2000s contained an explicit focus on violations of law, and of human and civil rights. Preliminary research suggests that, rather than offer comprehensive psychosocial rehabilitation, the philosophies and scientific assumptions underlying postearthquake treatment methods increasingly medicalize and locate within individual biology the traumatic stress reactions of their clients. For example, the Israel Center for the Treatment of Psychotrauma (ICTP) has launched Project Resilience Haiti: Rebuilding Community— an intervention that deploys cognitive behavioral therapy, Eye Movement Desensitization Retraining (EMDR), Somatic Experiencing, and other therapeutic modalities to treat PTSD in Haitians.4 The U.S.-based Trauma Resource Institute (TRI),5 an initiative of the Unitarian Universalist Service Committee, promotes somatic trauma-healing techniques to address PTSD in Haiti (Atcheson 2014). The TRI’s Trauma Resiliency Model (TRM) depicts PTSD as a biological phenomenon.6 TRI treatment methods build upon “current science about the physiological and psychological impact of traumatic and highly stressful experiences.” Initial models for the method drew from “Peter Levine’s Somatic Experiencing, Jean Ayres’ Sensory Integration Theory, Eugene Gendlin’s Focusing, basic biology and the laws of nature,” 7 to engender treatment modalities aimed at transforming the individual bodies, minds, and consciousnesses of their clients. It is possible that, given the proliferation of international governmental and nongovernmental actors that have intervened to assist with postdisaster reconstruction, there has been a concomitant specialization and compartmentalization of “rehabilitation” programs and technologies. It is also likely that as each intervention is implemented and completed, what I characterize as a political economy of trauma has only expanded internationally and throughout Haiti. Each “new” method contains and reinforces a purgatorial mode of treatment that inculcates in the client a set of techniques and practices of self-care intended to transform internal dispositions and consciousness. More research is needed to determine the extent to which these technologies of trauma also propose penitential modes of reparation between living survivors and the dead. It also remains unclear the extent to which emotional distress resulting from the earthquake has exacerbated or revived traumatic stress that resulted from earlier periods of political upheaval, for example, among Haiti’s viktim. Although many scholars have suggested that no disaster is “natural” and without disparate impact on a population because of prior sociopolitical inequalities (or subsequent failures of human actors to respond adequately), on the surface, a massive earthquake lacks a human agent responsible for individual and collective suffering. “Blame” or causation for negative symptoms and suffering can, therefore, more easily be attributed to personal biology than to an external actor or perpetrator. In times of emergency, a narrow or limited treatment focus also enables interveners to more easily demonstrate tangible results to their organizations’ constituents and donors. Only time will tell whether such programs will have been effective; but at a minimum, they will reinforce institutional attempts to transform the identities, minds, and bodies of Haitian clients while ensekirite grows unabated.

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N OT E S

1. See also Cohen 1999, Garcia 2010, and Rabinow 1999 for additional applications of the concept of purgatory in social theory. 2. Both of these latter groups were begun late in 1998 and dwindled in attendance in early 1999 because a new cycle of heightened ensekirite commenced after President René Préval’s January 11, 1999, dissolution of parliament and decision to rule by decree. 3. See Richard C. Keller, Colonial Madness: Psychiatry in French North Africa (Chicago: University of Chicago Press, 2008) for a compelling analysis of the emergence of ethnopsychiatry as a discipline. See also Didier Fassin’s critique of contemporary ethnopsychiatry in his dialogue with one of its leaders, Tobie Nathan, in Genèses 35 (June 1999): 146–71; and 38 (March 2000): 136–59. 4. See the Israeli Center for the Treatment of Psychotrauma website (accessed February 28, 2012, www.traumaweb.org/content.asp?pageid = 434). 5. According to the Trauma Research Institute’s website (http://traumaresourceinstitute .com/trauma-resiliency-model-trm/, last accessed February 28, 2012), “Trauma Resiliency Model (TRM) Training is a program designed to teach skills to clinicians working with children and adults with traumatic stress reactions. TRM is a mind–body approach and focuses on the biological basis of trauma and the automatic, defensive ways that the human body responds when faced with perceived threats to self and others, including the responses of ‘tend and befriend,’ fight, flight and freeze. TRM explores the concept of resiliency and how to restore balance to the body and the mind after traumatic experiences. When the focus is on normal biological responses to extraordinary events, there is a paradigm shift from symptoms being described as biological rather than as pathological or as mental weakness. As traumatic stress symptoms are normalized, feelings of shame and self-blame are reduced or eliminated. Symptoms are viewed as the body’s attempt to re-establish balance to the nervous system.” 6. See Trauma Resource Institute, “Trauma Resiliency Model (TRM),” accessed February 15, 2015, http://traumaresourceinstitute.com/trauma-resiliency-model-trm/. 7. See Trauma Resource Institute, “History,” accessed February 15, 2015, http:// traumaresourceinstitute.com/history/.

REFERENCES

Agamben, Giorgio. 1998. Homo Sacer: Sovereign Power and Bare Life. Translated by Daniel Heller-Roazen. Stanford: Stanford University Press. An-Na’im, Abdullah Ahmed. 1992. Human Rights in Cross-Cultural Perspectives: A Quest for Consensus. Philadelphia: University of Pennsylvania Press. Atcheson, Jessica L. “Healing Trauma after Disaster.” Rights Now, Winter 2014. Accessed February 15, 2015. http://www.uusc.org/updates/starting-to-live-again. Brodwin, Paul. 1996. Medicine and Morality in Haiti: The Contest for Healing Power. Cambridge: Cambridge University Press. Cohen, Lawrence. 1999. “Where It Hurts: Indian Material for and Ethics of Organ Transplantation.” Daedalus 128 (4): 135–65. de Certeau, Michel. 1984. The Practice of Everyday Life. Translated by Steven Rendall. Berkeley: University of California Press.

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Foucault, Michel. 1979. Discipline and Punish: The Birth of the Prison. New York: Random House. Originally published in France as Surveiller et punir: Naissance de la prison. Paris: Éditions Gallimard, 1975. ———. 2006. Security, Territory, Population: Lectures at the Collège de France, 1977–1978. Edited by Michel Senellart. Translated by Graham Burchell. New York: Palgrave Macmillan. Frank, Jerome D., and Julia B. Frank.1991. Persuasion and Healing: A Comparative Study. 3rd ed. Baltimore: Johns Hopkins University Press. Garcia, Angela. 2010. The Pastoral Clinic: Addiction and Dispossession along the Rio Grande. Berkeley: University of California Press. James, Erica Caple. 2004. “The Political Economy of ‘Trauma’ in Haiti in the Democratic Era of Insecurity.” Culture, Medicine and Psychiatry (28): 127–49. ———. 2008. “Haunting Ghosts: Madness, Gender, and Ensekirite in Haiti in the Democratic Era.” In Postcolonial Disorders, edited by Mary-Jo DelVecchio Good, Sandra Teresa Hyde, Sarah Pinto, and Byron J. Good, 132–56. Berkeley: University of California Press. ———. 2010. Democratic Insecurities: Violence, Trauma, and Intervention in Haiti. California Series in Public Anthropology. Berkeley: University of California Press. ———. 2011. “Haiti, Insecurity, and the Politics of Asylum.” Medical Anthropology Quarterly 25 (3): 357–76. Kleinman, Arthur. 2000. “The Violences of Everyday Life: The Multiple Forms and Dynamics of Social Violence.” In Violence and Subjectivity, edited by Veena Das, Arthur Kleinman, and Mamphela Ramphele, 226–41. Berkeley: University of California Press. ———. 2006. What Really Matters: Living a Moral Life amidst Uncertainty and Danger. New York: Oxford University Press. Mbembe, Achille. 2003. “Necropolitics.” Translated by Libby Meintjes. Public Culture 15 (1): 11–40. Métraux, Alfred. (1959) 1972. Voodoo in Haiti. Translated by Hugo Charteris. New York: Schocken Books. Mutua, Makau. 2001. “Savages, Victims, and Saviors: The Metaphor of Human Rights.” Harvard International Law Journal (42): 201–45. Nguyen, Vinh-Kim. 2010. The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham, NC: Duke University Press. Pankhurst, Nigel. 2012. “Haiti Earthquake: Did Appeal Money Make a Difference?” BBC News, January 11. www.bbc.co.uk/news/uk-16283942. Accessed February 28, 2012. Patterson, Orlando. 1982. Slavery and Social Death: A Comparative Study. Cambridge, MA, and London: Harvard University Press. Rabinow, Paul. 1999. French DNA: Trouble in Purgatory. Chicago: University of Chicago Press.

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17 DEATH AS A RESOURCE FOR LIFE Angela Garcia For Bernadette

In this chapter, I reflect on the way death, as involving loss, is realized within kin relations as a resource for life. Specifically, I explore how death manifests itself in affects and practices that may lessen the injury of loss and strengthen the commitment to live in contexts of uncertainty and pain. My goal is to show how death-in-life is not a morbid manifestation that is somehow opposed to life, but rather a vital experience that provides a basis for life’s meaningful unfolding, even generating hope for a future. However, as this future is expressed through loss, doubt is also cast upon any possibility of its coming to pass. I focus on this tension and try to capture the sense in which it shapes the efforts of kin to protect and care for one another—to hold on to the possibility of life—but with the knowledge that there is no assurance that their efforts will succeed. For me these are not issues concerning the moral or psychological foundations of certain behaviors. Rather, I am concerned with understanding the existential situations of people as they struggle to live in a world in which loss is deeply rooted in the rhythms of history and the everyday. There is an enormous literature on death and the experience of loss. My own thinking about these matters is influenced by theories of melancholy that point to sources beyond individual consciousness and that develop melancholy’s potential for understanding personal loss within the context of a larger history already laden with it.1 The experience of loss is thus encumbered with a variety of implications, meanings, and temporalities. I seek to unfold and disclose loss as a way of inhabiting the world and as a condition connecting past and future. I do so not in the pursuit of healing or happiness, but to renegotiate the very terms of life and living in a world so often characterized as destructive and deadly.

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My concern with these issues derives from my engagement with multigenerational households struggling with heroin addiction in northern New Mexico’s Española Valley, which has suffered the highest rate of heroin addiction and heroin-induced death in the United States. Between 1995 and 2000, this network of rural communities saw over one hundred deaths attributed to heroin overdose. My family has roots in the Española Valley, and I lived there as a child. Several of my schoolmates died from an overdose of heroin. In 2003, I returned to the Valley as a doctoral student and lived there for three consecutive years, studying families contending with heroin addiction. I return to the Valley at least twice a year. Twelve of my interlocutors died from heroin overdose during that time. They were my neighbors and friends, people I longed to see and sometimes tried to avoid. I miss them all. Heroin addiction in the Española Valley primarily affects the Hispano population, which traces its ancestry back to the Spanish colonialists. Among Hispanos, addiction is commonly shared across multiple generations of kin, who often live in a single shared household. This living arrangement reflects Hispano traditions and ideals of family as cohesive, self-reliant, and enduring. It also reflects—and, to a degree, offsets—conditions of poverty, which include high rates of unemployment, chronic health problems, and lack of health insurance, among other conditions.2 The multigenerational heroin-using household is a site of illness and care, death and survival. It is worth dwelling for a moment on this tension. The Española Valley was settled by Spanish families beginning in the seventeenth century through a system of land grants, which remained in the family lineage for generations. These land grants enabled kin to live in close geographic proximity and to work collectively, thereby creating and sustaining crucial affective, material, and social bonds.3 Elsewhere I have written in detail about the successive cycles of colonial conquest and dispossession, especially through the establishment of the U.S. Forest Service and the sudden imposition of the Los Alamos National Laboratories, both of which violently disrupted these connections (Garcia 2010). Let me summarize here by noting that the vast majority of Hispano land grants are no longer in the possession of their “heirs.” Today, most Hispanos are forced to commute long distances to work low-wage service-sector jobs. Whatever inherited land remains is increasingly sold to survive, creating tensions and resentments within many families.4 The land, ever present but out of reach, produces an idiom of loss and longing that expresses both the cohesiveness and fissures of family life. It is a witness to another time and to the death of a way of life. To a certain extent, today’s multigenerational household is a form of connection that seems to have survived the collapse of this life, since it enables kin to continue to live together and to contribute to the care of the household and each other. This living arrangement has become enmeshed in material and emotional pressures from property loss, incarceration, addiction, and institutional neglect. As a result, these households carry an overwhelming responsibility for the care of their family members. The heroinaddicted household has been torn open by the cumulative losses of the past, but it also

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demands that it cohere in the present, even as the present incites more losses through heroin addiction. These losses, in turn, weave kin relations together ever more tightly, and unravel them as well. In exploring family narratives that reflect this tension, what has been at stake for me is to understand how bodily and affective states associated with addiction sustain a sense of familial commitment by generating salient ties of injury and care. In this process, the profound losses from the past, and those that accompany addiction today, are evoked and lessened; a rhythm is put into motion by the very rituals of familial drug use. Closely attending to family-based practices that involve heroin—practices like preparing, injecting, and sharing heroin; shared states of being high; and caring for one another during heroin withdrawal—calls for a refinement of prevailing assumptions about the object of desire in the context of addiction. It also calls for a refinement of the relations of injury and care, loss and survival, as they unfold among multigenerations of heroin-addicted kin. Within a domain of inquiry where definitive answers to complex human matters proliferate, the commitment to this tension emerges as an epistemic and ethical stance, one that affirms the ambiguities of everyday life for those whose existence is already assumed to be determined.5 In saying this, I do not mean to suggest that we rest easy with ambiguity or indeterminacy. Indeed, in living and working with addicted families over many years, I have seen what the unknown may become. A grandmother with debilitating arthritis becomes addicted to prescription opiate medication; she begins injecting heroin with her granddaughter because, as she said, it is cheaper and less lonely. Or a child shy of eleven years old helps fill a syringe with heroin, his father trembling beside him. He finds his father’s vein and pushes the plunger in, upon which his father stops trembling and embraces him. Considered in abstraction, identities and actions can be disentangled and moral positions pronounced, often with legal consequences. But from the vantage of close ethnographic engagement one may see how these experiences reveal the intricate imbrication of vulnerability and hope. The affective dimensions of such experience, and their connections to social and political domains, can be reckoned to allow for a more robust understanding of expressions of care. They can be reckoned within and against the knowledge that these life-making gestures also wear on life, sometimes dangerously. This wearing is not, in my view, a form of “cruel optimism,” to borrow Laurent Berlant’s evocative term for relations of attachment that diminish conditions of possibility (2006). Rather, it is the articulation of daily efforts to maintain and increase one’s hold on life, while acknowledging the uncertainty and risk such efforts entail. In what follows, I focus on a relationship of a mother and daughter—I call them Eugenia and Bernadette—because their narrative helps us to conceive of the ways death deeply penetrates life, not only in the sense of diminishing it, but also in the sense of giving it new resources to survive, perhaps even flourish. The story I share hinges on two moments that are separated by a span of nearly twenty years. Without filling out a complete picture of these moments, I hope to show how they open up horizons for contemplating the

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possibilities for life enabled by death, and to apprehend how loss is one basis for claiming a future.

F I R S T M O M E N T: A W I N T E R N I G H T

I begin with a memory. The memory is Bernadette’s, whom I met in 2004 shortly after I began conducting fieldwork.6 Like so many of her memories, this one takes place in the village where she spent most of her childhood, the only child of a single mother named Eugenia. The house where Bernadette grew up figures prominently here; it is also the house Eugenia was born in and where her mother (Bernadette’s grandmother) died. Eugenia sold the home over twenty years ago. I’ve visited it many times, sometimes with Bernadette and sometimes alone, but always from the outside. It is an earth-colored adobe with a pitched tin roof and is framed by old fruit trees. It looks grand in comparison to the neighboring residences, all of which are narrow trailer homes that sit very close to the road. Bernadette was living in a rented trailer home the day she recalled this memory. But she spoke of the old adobe in the present possessive, as if it still belonged to her family, as it had for many generations. It was summer, too hot for us to sit outside. From the tidy but dark living room of her trailer Bernadette recalled being ten years old. Christmas had just passed without much celebration because her mother was too ill to participate in the usual holiday festivities. She recalled that the house was cold and there was little to eat or do. Her days were spent trying to keep a fire going in the old wood stove and checking on her mother, who mostly stayed in her bedroom beneath heavy wool blankets. Eugenia was drying out—detoxing. Bernadette never said what she was detoxing from, perhaps because she never used the word heroin, preferring (as many Hispanos do) the term medicina, emphasizing the drug’s capacity to heal, not hurt. However, in this context, it wouldn’t make sense to say Eugenia was detoxing from medicina, just that she was drying out. On one of these winter afternoons, Bernadette left her mother home alone to visit family who lived in a nearby village. Many relatives had gathered there, bringing with them leftover foods from earlier celebrations and small gifts to exchange. For a few hours, Bernadette’s mood brightened. But the pleasant and relaxing atmosphere was interrupted when she overheard some of her relatives whisper angry words about Eugenia. They criticized her for being addicted to heroin, for being a “bad mother,” and for not taking care of the ancestral home, which she (and not her brothers) had inherited. Bernadette recalled feeling angry and shamed. She asked her uncle Ray (Eugenia’s brother) to drive her back home. Later that evening, one of Bernadette’s cousins came by unannounced and asked her to join him for a walk. Although it was dark and bitterly cold, Bernadette agreed. She imagined that he wanted to see if she wanted to talk, given that he was at the gathering and saw her leave upset. The cousins were close in age and size. They walked up the narrow, snow-covered road that snaked through the village. Bernadette recalled that it was a quiet night and that

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the moon shone brightly. She said that they didn’t hear the tractor that approached from behind them, clearing the road for morning travel. The driver didn’t see the two children beyond the blade of the tractor, which hit and killed Bernadette’s cousin. I recall my own eyes filling with tears as Bernadette described the terrible scene: the blood darkening the snow, her running back down the road, now cleared of the footprints she and her cousin had only just made. She found her mother in her bedroom, crouched beside her uncle Ray, who was also the father of her cousin who had been hit. They were doing something; at the time Bernadette did not know what. Many hours later she learned that they were assembling a belated Christmas gift for Bernadette, from her mother. It was a bed frame, white with elaborate swirls of gold trim. Bernadette described it as a princess bed. In the painful days following the accident, Bernadette learned that her mother and uncle had planned to build the bed that evening, while Bernadette was at the party. Because she came home earlier than expected, her cousin suggested the idea of the nighttime walk. He wanted the gift to be a surprise for Bernadette, presumably to amplify her moment of unexpected joy. The bed sat unused in Bernadette’s room for years. She told me that she neatened its blankets and pillows but couldn’t sleep on it. Instead, she slept, as she had before her cousin’s death, on a mattress on the wood floor. She placed it alongside the bed, like a companion to it. Bernadette described the many nights she lay on her mattress, facing the empty bed, filled with deep sadness. The gesture of the gift was thus transformed into one of loss, and the routine of sleep into one of mourning. I could stop rendering Bernadette’s memory here. But after she recalled the story of her cousin’s death, Bernadette asked me to follow her, and she led me down the short hallway of her trailer. I assumed she was going to show me a picture of her cousin, but she opened the door of her daughter’s bedroom, revealing the bed, which nearly filled the small space. It was made up with flowery bedclothes and displayed a collection of brightly colored stuffed animals. Bernadette told me that she liked to watch Ashley sleep on the bed, peaceful and able to dream. It is difficult for me to imagine a more profound example of the possibilities embedded in loss. At the time she told me this story, nearly twenty years had passed since her cousin’s death. Bernadette not only had preserved this loss but had taken it and projected it into new ways of being. By passing the bed to her daughter, she brought the gift to life. Much could be said about this incident, but here I want to focus on the questions it raises about inhabiting loss. In the interpretation I am exploring, the death of Bernadette’s cousin and the gift of the bed cannot be differentiated. The gift of the bed is always and already an experience of loss, but it is also a vision and dream of the future. In short, it is an expression of the horizon of life—of life’s fragility, durability, and potential to change. To me, Bernadette’s memory offers resources for reflecting on the experience of death, and for protecting a space within it in which life can flourish. I believe this interpretation to be plausible because Bernadette had been eager to tell me this story on that

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particular day, which was a few days before she was about to go prison. At a time of impending loss—of her home, her daughter, and her “freedom”—the memory of her cousin’s death manifested new and intensified meanings. She seemed to be expressing something about what it is to be committed to loss, to inhabit it—not as a form of nostalgia, but in order to clear the ground for a different kind of future. What would be required, she seemed to suggest, was time and hope, of living with death for many years as a condition for new forms of life. The memory of the death of her cousin and the sorrowful gift refracted possibility through her life, enabling her to glimpse a future different from the one pressing upon her.

I N T E R L U D E : I N J U RY A N D C A R E

When I met Bernadette in 2004, she had just been charged with a felony-level offense. Prior to her trial, she was ordered to the rural drug-recovery program where I worked as an ethnographer and on the clinical staff. I observed Bernadette’s monthlong stay during my work on the night shift and often attended to her basic needs, like providing food or medications or dialing the telephone for her outgoing calls. We got along easily. Having been a patient at the clinic before, Bernadette was used to the routine of rehab and avoided conflict with the other patients and staff. Without my ever asking, she would wash the evening dishes, sweep the floors, or help straighten the common room. If I protested, she insisted. She never joined the other patients in watching television, saying that she preferred to stay busy by cleaning or writing in her daily journal, which patients were encouraged to keep. It was during casual conversations that I first learned that her mother, Eugenia, was also addicted to heroin and suffered from lifelong, debilitating depression. I also learned that Bernadette had two children: an estranged teenage son and a young daughter named Ashley who had lived with her until her arrest. On the day of Bernadette’s departure from the clinic, an electronic monitoring bracelet was attached to her ankle. She was confined to her trailer until her impending trial date. Her only legal time away from home was to meet with her probation officer or to attend 12-step meetings. Still, she would steal a few moments between these meetings to visit Ashley, who had been placed under the care of a relative after her arrest, or to see her mother, whose trailer was located only a few miles away from her own. Mostly, however, Bernadette spent her days at home alone. I visited Bernadette often during this period, making the short drive from my village to hers. I brought her groceries and cigarettes, and she told me stories about her life. Often these stories centered on “another time,” well before she started using heroin, when she and Eugenia lived in their ancestral village, in their ancestral home. Bernadette spoke lovingly about the home and the events that took place within it—birthday parties, Christmases, picking fruit from the apple and apricot trees from surrounding acres. Sometimes she showed me photos that corroborated her memories. But the bucolic image of the house and the quaint memories of it stood in tension with the other stories

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Bernadette eventually told me: her recollections of her mother’s addiction and mental state; their deepening poverty; and her own growing loneliness and worry. During an especially vulnerable time, Eugenia sold the beloved home and the two relocated to a rented trailer. (Later I realized that this happened two years after her cousin’s tragic death.) At the age of thirteen, Bernadette worked in the evenings and on weekends in order to contribute to the running of the new household. There were very few mentalhealth or addiction services in the area, despite an increasing awareness of the growing drug problem. The profound stigma attached to being a heroin-addicted woman, especially a mother, made accessing these limited services even more challenging for Eugenia. Mother and daughter thus crafted their own services by caring for each other, often obtaining medicina to relieve Eugenia’s pain. In one interview with me Bernadette described those times: When I was a teenager, that’s when I really knew there was something going on with my mom with drugs. She’d be crying all the time and sick with las malias [literally, “maladies”; pain associated with heroin withdrawal]. She didn’t go to work and I started staying home from school, you know, to watch her, make sure nothing worse happened. She’d cry for her medicina. . . . I wanted her to feel better. That’s all that mattered to me. I was afraid she was going to die. I was afraid, and the only thing I could do is help her get high.

During this period of Bernadette’s youth, the first epidemiological studies of heroin addiction in the Española Valley were under way, coinciding with the escalation of the nation’s War on Drugs. In New Mexico, arrests for nonviolent drug offenses skyrocketed. An outcome of these processes was the establishment of the first privately run women’s prison in the United States, located in a remote corner of northwestern New Mexico; Bernadette was eventually incarcerated there. Returning briefly to Bernadette’s youth, what I wish to emphasize is that the institutions concerned with the governance of illness, gender, and social life shaped, in part, the way Bernadette cared for her mother—and the way she would eventually be cared for by her. That is, the institutional arrangements for the treatment of addiction were projected into the small routines of intimacy Bernadette and Eugenia developed. Such routines can never be reduced to being merely an outcome of governance; thus, I have found Elizabeth Povinelli’s (2006) concept of the “intimate event” helpful in thinking about how such routines are produced at the intersection of individual agency and social constraint.7 In the context of pervasive sexism, the criminalization of addiction, and the lack of alternative health resources, heroin is medicine. The labor of “scoring” is a means of caring. Bernadette often said that “once Eugenia got her fix, life would go back to normal,” meaning Eugenia would stop hurting and would be released into feelings of love and connectedness—feelings Bernadette also craved and needed. As an intimate event, we might understand such scenes as both Bernadette’s individual demonstration of her love and care for her mother and a manifestation of the inflexible constraints (legal, therapeutic,

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gendered) that occluded other possible forms of loving and caring. Bernadette’s actions simultaneously absorbed and repelled these repressive structures. This tension is also evident in Bernadette’s own history of heroin use, which I turn to now. Bernadette began smoking heroin with a boyfriend at the age of fifteen. Soon, her mother became her primary drug partner—a transition she once described to me as “natural” and “safe,” especially given the more precarious and frequently violent relations she had with male drug partners. At sixteen, Bernadette dropped out of high school and became her mother’s “running partner.” Their relationship as kin became mutually organized around heroin: they hustled for it, shared it, “kicked it,” and took care of one another when one was ill with drug-related sickness. The interdependencies that were produced through heroin become part of Bernadette and Eugenia’s relational mix—a kind of “ethical substance” through which care was performed and commitment reaffirmed.8 But often that care was performed and the commitment reaffirmed in the context of further fragmentation and subjections. Family members began refusing their requests for money, drugs, and “another chance.” There were more run-ins with law enforcement and more close calls with overdoses, especially for Eugenia. At the age of seventeen, Bernadette gave birth to a boy who would be raised by his paternal grandparents. Within the local norms of gender and kinship, where mothers or maternal grandmothers are expected to take on the role of parenting, this arrangement only seemed to emphasize Bernadette’s and Eugenia’s instability and difference. However, Bernadette’s significant decision to give her son to his paternal grandparents emerged from a similar experience of care that she had cultivated with her own mother. That is, in circumstances of profound uncertainty, she developed a new understanding of what being a parent is. In this case, it meant relinquishing her status as a mother. At the same time, however, her connection to her own mother intensified. Configured in part by loss and addiction, this connection provided Bernadette with resources for living. I have told the story of Bernadette’s early years in a linear way to provide a basic sketch of her life. Most of what I have shared thus far Bernadette told me during my visits with her while she was under house arrest. There were many other points of interaction, too, which took place in different settings at different times and with other people, including her mother and extended family, legal officials, and health-care providers. All of these interactions impressed upon me the varying and often conflicting understandings of what Bernadette described as “care,” and how articulations of it emerged simultaneously from feelings of longing and love, as well as from histories and experiences of loss and hurt. These sensibilities and modes of engagement arise from the exigencies of everyday life and from the broader political histories that inform it. I engage these sensibilities as the ethnographic material of an ethics embedded within everyday life. Such an ethics would therefore be an outline not of how one should ethically respond, but of how to develop a sense of the ethical as “a striving—the play of uncertainty, doubt, and the deepening of intimate relations within a whole weave of life” (Das 2010, 378). This sense of

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a striving is exemplified in this chapter’s second moment, which I describe below. Let me begin by providing some necessary details of the circumstances that led to it. On a late winter morning in 2003, after a series of domestic disturbances and complaints of drug dealing by neighbors, police raided Eugenia’s home. Significant quantities of heroin, marijuana, and drug paraphernalia were discovered at the scene. Bernadette was present at the time of the bust; Eugenia was not. Approximately a year after the raid, Bernadette was sentenced to five years in prison. Shortly thereafter, Eugenia received three years of probation. At first, Bernadette’s physical presence in her mother’s trailer, along with the drugs, seemed to be the deciding factor in the disproportionate ruling. Moreover, Bernadette had a well-known history of drug addiction, which involved prior misdemeanor convictions. Although this criminal history influenced her sentence, the most significant factor was later revealed to be what she eventually described to me as her “oath of silence.” In describing this expression of care as an “oath,” Bernadette drew on the language of law, but in a way that recalibrated its norms to affirm a gesture that was conceived as care. I first learned of Bernadette’s oath, or what she sometimes referred to as a “promise,” during my visits with her in the months before her sentencing. She told me the story in a series of fragments—a few details one visit, a few more the next—leaving me to piece together its major threads. She often began recounting scenes or conversations with the disclosure that she didn’t want to talk about what it was she was about to say, or that she shouldn’t talk about it. I never pushed and often shifted the conversation toward other matters. But Bernadette would steer the conversation back, repeating her ambivalence about talking about the events surrounding her arrest, but also expressing relief in discussing them. As it turned out, Eugenia was helping to “move” the drugs for someone else in exchange for heroin to sustain her own addiction as well as Bernadette’s. The other person disappeared immediately after the raid, leaving Eugenia and Bernadette to sort out the consequences. Around this time, Eugenia was in an especially bad state. Her depression had deepened, and she had recently suffered an overdose. “I couldn’t let her go through it,” Bernadette explained, referring to the consequences that would likely have resulted from a trial. Initially, Bernadette’s version of events seemed to me like a harrowing story of kinship roles and obligations gone awry—of a daughter assuming the role of an overprotective and self-effacing mother, while the mother sank into the role of a victimized child. In time, however, it became clear to me that the texture of emotions that bound Bernadette to Eugenia, and Bernadette to her promise, went beyond the figurations of kinship and principles of duty. What weighed most heavily upon Bernadette was the fear of Eugenia’s worsening mental health and possible death. First and foremost, Bernadette took responsibility for the drugs as a means to keep Eugenia out of prison and alive. But her response expressed much more, including her desire for a certain kind of future—one she could not yet imagine. It was not an arrangement she entered into lightly. She was well aware

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that she might lose her own daughter and that her action would cause friction with others. Thus, in caring for her mother, Bernadette’s relationship with her own children, and her relationship with the larger social world, were threatened. But she felt called to respond to the vulnerability of her mother, which also held Bernadette’s desire to make possible the continuity of Eugenia’s presence within her own life. In other words, her loss also held her hope. Bernadette’s awareness of this loss was especially acute when she calculated her likely prison sentence in terms of Ashley’s age and the passing of time. Anticipating conviction, she imagined: “If I am convicted tomorrow and get three years I’ll be out by the time she’s seven.” Or, “If I am paroled in two, I’ll be out by time she’s in kindergarten.” Such calculations might be understood as lamentations, or a resentful compromise. But they were also articulations of Bernadette’s own desire for a life for and with her daughter, Ashley.

S E C O N D M O M E N T: A F I G U R E O F I S O L AT I O N

I visited Bernadette in prison and spoke to her often by phone. During our visits, we sat together in the brightly lit visiting room. Although these visits were designated “open contact,” meaning prisoners were not separated by a screen or intercom system, touch was prohibited. Bernadette was untouchable, a figure of isolation. Our first visit took place a few months into her sentence and lasted several hours. Given the circumstances, I found her to be in relatively good spirits. Bernadette said that she missed Ashley but was certain that Eugenia “couldn’t survive” prison, thus implying that she would survive. Confounded and perhaps chastened by her sacrifice, I challenged her: was it possible that she was overestimating Eugenia’s vulnerability and taking too lightly her own? Bernadette was resolute. “At night there are so many noises,” she said. “You can hear all these ladies crying.” Bernadette suggested that the emotional outpouring of the other inmates would generate an overwhelming feeling of despair in Eugenia, threatening her chances of survival. Didier Fassin suggests that the concept of survival “shifts lines that are too often hardened between biological and political lives: it opens an ethical space for reflection and action” (2010, 93). Fassin cautions against reductionist understandings of survival for those living under oppressive circumstances, emphasizing the complexity and potentiality of subtle gestures and affects produced within the context of oppression. Similarly, I have come to understand Bernadette’s insistence that she could survive what Eugenia could not as far more nuanced than a calculation of their respective capacities to withstand hardship; it was an expression of her care for her mother, as well as an affirmation of her own strength. That Bernadette drew upon the sounds of women crying at night to evoke her mother’s vulnerability struck me. I recalled our earlier conversations about her mother’s depression, especially her childhood memories of Eugenia’s long bouts of crying, which inspired contradictory feelings of helplessness and protectiveness in her. As it turned

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out, in protecting her mother from the hurt of prison, Bernadette subjected herself to the haunting chorus of nightly crying, and to new battles with sleeplessness and anxiety. The next time I visited Bernadette there I found her noticeably heavier and downcast. She placed her swollen hands on the table and spread her fingers wide, revealing her raw, bitten skin. “I am eating myself,” she said. Self-mutilation provides a “voice on the skin” when the actual voice is forbidden or constrained (McLane 1996). A gestural modality of language, it expresses the boundary between existence and nonexistence, self and other, pain and relief. Maurice MerleauPonty (1962, 196) writes that gestural language “makes its appearance like the boiling point of a liquid, when in the density of being, volumes of empty space are built up and move outwards.” Constrained by the physical and social bounds of incarceration, untouchable, Bernadette was isolated from a mode of engagement that came to define the shape of her injury and comfort—her inextricable connection with Eugenia. One might say that the absence of this engagement became present through self-injury. She compulsively bit her fingers day and night, eliciting and then tending to her own wounds. During that visit, Bernadette recounted that when her fingers had become infected, the prison infirmary treated her with antidepressants. Given her addiction to heroin, she was denied prescription medication that might help her sleep at night. The antidepressants helped level off the problem temporarily, but the biting eventually returned, and with renewed urgency. The infirmary supplied gloves that were locked onto her hands at night. Bernadette described the gloves as a kind of torture, a double imprisonment: “They made me think about how alone I was.” Gloves locked on, her sores began to blister, and her sleeplessness worsened. Eventually, the infirmary’s nurse gave up and, in Bernadette’s words, told her to eat herself to the bone. Bernadette was anxious. She hadn’t seen Eugenia or Ashley in several weeks, and she worried that they’d forgotten about her. What if her mother moved away? What if she did not regain custody of her daughter? How would she—Bernadette—live? I tried to soothe her worries with updates from family members and friends and by offering empty assurances that things would be OK. The path of caring for Eugenia led Bernadette to suffer a profound loss. But it was a loss that also expressed her hope for life. I came to understand this in 2009, shortly after Bernadette was released on parole. Back in the Española Valley, she was living with her mother and daughter again. Their housing situation was unstable: Bernadette was finding it difficult to find a job, and Eugenia’s monthly SSI check barely covered the rent for the apartment. During a visit, I found her new residence to be worryingly vacant. The white bed frame was gone. The apartment seemed to embody a duality of holding onto and losing what is most dear. Still, Bernadette was happy to be home and spoke of plans to fix up the apartment once their financial situation improved. Frankly, my visit that day was intended in part to suggest other living arrangements for Bernadette and Ashley. I was worried that living with Eugenia would increase Bernadette’s

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chance of relapse and a return to prison. We were alone in their apartment and could talk openly. Bernadette was patient with my concerns but said that there was nowhere else in the world she would rather be, or even could be. After such a long and painful period of separation, she had no intention of leaving. I felt embarrassed and prepared to leave, noting, as I always did, my planned date of return. (Only recently did I realize that I always said this when I left New Mexico—as if to say, Please be here when I come back.) Before we said good-bye Bernadette asked me if I would do her a favor and presented me with a cardboard box. She asked me to hold onto it for her, explaining that she didn’t want the contents around her or Ashley any longer, but didn’t want to lose them, either. The box contained her correspondence with Eugenia and Ashley during her years in prison. For now, the letters remain in my home, in my care. In letting go of them, Bernadette tried to preserve them—in a memory, a cardboard box, an essay.

N OT E S

1. Melancholy speaks to the fundamental fact of loss and positions it as a potential site of a relation to, rather than a remove from, the world. As a paradigm for the enduring attachment to objects of loss, it opens anew questions of the relationship between past and present, death and survival. See Benjamin 1977, Eng and Kazanjian 2002, and Freud 1989. 2. New Mexico has the highest national rate of residents living in poverty and the secondhighest percentage of those living without health insurance. One-fourth of the residents of Rio Arriba County, where the Española Valley is located, live below the poverty level. 3. Hispano land assumed a lexical structure of kinship as represented in the idiom la tierra es madre (“land is mother”), and agricultural terms were imbued with connotations of kinship, such as acequia madre (“mother ditch”) and sangrías (literally “bloods,” or smaller ditches). Such naming practices yield insight into the interconnectedness of kinship and land and, by extension, the proximity of loss. 4. Between 2002 and 2007, Hispano land holdings declined by nearly four million acres, reflecting the stark economic pressures Hispanos face. Many landless heirs poignantly consider themselves as “hijos de nada” (“heirs of nothing”). 5. I refer here to both the biologizing of addiction—especially the dominance of neurobiological knowledge that takes up addiction as a chronic dysfunction of normal brain systems— and the criminalization of addiction. 6. I do not have an audio recording of Bernadette’s recollection of this memory, so I present it here in assimilated form. Thus, Bernadette’s memory might also be framed as my memory. I prefer to consider myself as having been touched by this memory, and marginally connected to it, through my rendering of it here. 7. Drawing attention to specific practices of indigenous and gay communities, Povinelli argues that both are caught, albeit differently, within the liberal colonial regimes, which “constitute a subjectivity and sociality that not only absorbs the poison of a vicious pervasive racism and homophobia . . . but also produce from these repressive social fields a viable antidote to them” (2006, 100).

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8. Here I engage Michel Foucault’s notion of ethical substance as he described it in volume 2 of The History of Sexuality, The Use of Pleasure, wherein bodily pleasure is the prime substance or material of ethical practice. The ethical work of the self is to establish conduct in relation to this material. See Foucault 1990.

REFERENCES

Benjamin, Walter. 1977. The Origin of German Tragic Drama. Translated by John Osborne. New York: Verso. Berlant, Laurent. 2006. “Cruel Optimism.” Differences 17 (3): 20–36. Das, Veena. 2010. “Engaging the Life of the Other: Love and Everyday Life.” In Ordinary Ethics: Anthropology, Language and Action, edited by Michael Lambek, 376–99. New York: Fordham University Press. Eng, David, and David Kazanjian. 2002. Loss: The Politics of Mourning. Berkeley: University of California Press. Fassin, Didier. 2010. “Ethics of Survival: A Democratic Approach to the Politics of Life.” Humanity: An International Journal of Human Rights, Humanitarianism, and Development 1 (1): 81–95. Foucault, Michel. 1990. The History of Sexuality. Vol. 2, The Use of Pleasure. Translated by Robert Hurley. New York: Vintage Books. Freud, Sigmund. 1989. “Mourning and Melancholia.” In The Freud Reader, edited by Peter Gay, 584–85. New York: W. W. Norton. Garcia, Angela. 2010. The Pastoral Clinic: Addiction and Dispossession along the Rio Grande. Berkeley: University of California Press. McLane, Janice. 1996. “The Voice on the Skin: Self-Mutilation and Merleau-Ponty’s Theory of Language.” Hypatia 11 (4): 107–18. Merleau-Ponty, Maurice. 1995. Phenomenology of Perception. Translated by Colin Smith. New York: Routledge. Povinelli, Elizabeth A. 2006. The Empire of Love: Toward a Theory of Intimacy, Genealogy, and Carnality. Durham, NC: Duke University Press.

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SECTION 3

HEALING Religious and Secular Bodies

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The section on healing is not about the cure of illnesses seen as discrete or bounded entities, but rather about the way individual lives and the social milieu constitute each other at moments when life is undone by events large and small and is reconstituted or remade sometimes in simultaneity and sometimes in succession. We do not wish to present a beatific image of healing but to suggest, instead, that our pictures of healing are also pictures of how pain is distributed in the social body, of futures that have to be made in the face of routine as well as catastrophic suffering, and of learning to endure. We might ask, Who are the people who take up the burden of attending to a torn and disrupted world? Healing, like care, has its light side and its dark side; we need to understand both sides to see how the social and the natural are made to hold together. The seven chapters in this section do not take “healing” as their direct subject of inquiry; one could as well think of them as being about secularism, or about the body or about precarious lives—which, indeed, they are. Read together, they show the social forms through which alone the complex of ideas and experiences of healing can be made to appear, but they also show the waxing and waning of the impulses to find life or forsake it. The particular contribution of these chapters is to show not only the social conditions in which institutional experiments happen but also the existential stakes in the impulse to address pain; to catch the moment of joy, however ephemeral, that humans find in each other; and also to reimagine one’s future by learning to endure the idea of one’s own death in relation to the death of the other. In the chapter on the secular body that opens this section (chapter 18), Talal Asad asks, What are the distinctive ways of living and working through suffering? His masterly exposition into the historically shifting grammar through which the healthy body and the sick body are defined cautions us that before we attend to the question of healing there is the prior question of who or what is in need of cure. Is the purpose of healing to find ways of getting rid of pain, or is it to learn the deeper significance of pain? How are the secular body and the religious body connected, and is pain the major medium through which the psychic structure of the political body is articulated? Thus the theological notion of disease as a secret disobedience to God is continuous in some ways with the secular notion of the obligation to maintain the body in health as an obligation to the biopolitical State. Similarly, the secularized view of the body is never as disenchanted as hard secularists are prone to believe. This mutual intertwining of the religious and the secular sets up a very important framework for understanding what Wittgenstein would call grammar (see the discussion in the introduction), through which we learn what kind of object is disease or pain or what it means to be in living relationship to these entities.

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In the next chapter, entitled “Nonself Help” (chapter 19), A. David Napier examines the debates in immunology and the shift from the earlier, reactive definition of immunology to that of protection through expulsion. What is so often overlooked throughout these debates over models of immunity, says Napier, is the degree to which immunological identity hinges on culture-bound notions of a wholly autonomous “self” that persists over time and protects its integrity through the expulsion of the other. Yet for some conditions such as pregnancy, the relation between a pregnant woman and the fetus is not that of expulsion but of temporary respite in the fight against the “foreign presence” in the body that allows reproduction to happen. Through a fascinating exploration of such objects as viruses that stand between life and nonlife, Napier is able to show how healing might be redefined as explorations on the borders of life. We harbor within ourselves the desire to court risk: our bodies not only fight viruses, they also nourish them. The new ways of conceptualizing immunity lead one to reimage the relation between life and death as having far greater intimacy than the notion of life as fundamentally opposed to death. Of course, the insight that the impulse to life and regeneration is integral to the way societies deal with death is not new (see Bloch and Parry 1982), but whereas earlier studies privileged symbolic or ritual constructions, Napier makes the case that our bodies nourish death as much as they nourish life as an ontological claim. This shift opens up a whole plethora of questions regarding individual variability and the relation between human and nonhuman that should engage anthropologists of medicine as much as scholars of religion. The subject of Christopher Dole’s chapter, “Secular Histories, Saintly Returns” (chapter 20), is the poetic speech and saintly biography of the Turkish healer Zöhre Ana, which stands in an ironic relation to the secular reforms in Turkey in which such forms of healing were made illegitimate as characteristic of “superstition.” The irony lay in the fact that Zöhre Ana was, for her followers, the inheritor of Atatürk’s spirit (ruh) and a person through whom Atatürk, as a deceased evliya, was able to speak again to the living. Yet this is the same Atatürk, the modernist founder of Turkey as a nation-state, who had pronounced such forms of healing that appealed to the spirits of the dead as a disgrace to civilization. Of course people go to healers because they want cure or solace in the face of suffering, not because they are engaged in a deliberative discourse over secularism. But in the light of the continuing confrontations between the authority of the State to redefine Islam in modernist terms and the authority ascribed to a variety of spiritual healers, Dole finds that when people recounted their experiences of healing, the story of personal and familial loss was knotted into struggles over the status of death, loss, and devotion in relation to State power. Since a large variety of people sought the assistance of healers outside the State’s authorized network of clinics and medical practitioners such as Qur’anic healers, living saints, and other religious figures, the therapeutic was shot through with the political in their accounts. Thus when Zöhre Ana speaks in the voice of Atatürk, the founder of the secularist critique that supported the suppression of her forms of religious authority, ironically he is the one who returns in the manner of unbidden thoughts to authorize her status as an evliya. Just as death was expelled to the

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margins of the nation-state under secular reforms that defined life as the biological life of the population but returned to the center when people tried to find spaces of healing within which they could express aspirations for a life beyond biological life, so the saintly forms of healing that were expelled from the nation returned in the illicit but revered healing practices of saints such as Zöhre Ana. The great twist in the plot is that this is accomplished not by a mode of resistance to secular authority but by making the secular authority itself the agent of this return. As Dole says, such forms of healing might have been expelled from the nation-state, but they cannot be expelled from history. The next two chapters—that by Bernadette Wegenstein, entitled “The Good and the Bad Breast” (chapter 21), relating to the themes of cosmetic surgery and breast cancer; and that by Zoë H. Wool, entitled “Attachments of Life” (chapter 22), which looks at modes of rehabilitation of injured soldiers at the Walter Reed Army Medical Center in Washington, D.C.—bring issues of gender to the center of analysis. Addressing herself to what she calls “beauty’s dark side,” where beauty and death coincide, Wegenstein looks at the increasing demand for breast augmentation through cosmetic surgery that goes along with single or double mastectomy in U.S. hospitals. Working with twelve breast cancer patients in a hospital in Baltimore as part of a documentary project, Wegenstein takes us through the biographies in which the hope for surgical improvement on one’s body stays in the vicinity of the fear of death that women live with after they have been diagnosed with cancer or are informed of a genetic risk for developing cancer. While Wegenstein clearly recognizes that certain cultural hegemonic discourses such as an internalized racism and the impact of advertisements on the idealized female body are present in the way the desire for self-improvement comes to focus on the breast, she insists that no single principle can explain the valence of the idea that the suffering caused by breast cancer can be redeemed by making a new breast appear and cover up the place in which the ugly cancer revealed itself. Wegenstein finds a deep grammar in which ideas about the good breast and the bad breast as well as Christian notions of martyrdom as applied to female saints appear as fragments in the stories of the twelve women she followed. Deeply held notions—of beauty as masquerade, of skin-deep beauty as hiding the ugliness of the decaying body, of the presence of death that mocks beauty as well as the possibility that the appearance of breast cancer is also a chance of being born to a new life—are given expression in the narratives of the twelve women, showing the closeness of birth and death in the career of the disease. Canguilhem’s astute notions of the pathologically normal and diseases as an experiment with life are displayed with great finesse in this chapter. Zoë H. Wool’s account of the practices of rehabilitation of soldiers injured in the wars in Afghanistan and Iraq raises the fundamental question of what the soldiers are being rehabilitated to or as. The site where Wool conducted her fieldwork, Walter Reed Army Medical Center, is the flagship medical institution where the promise of attending to combat injured soldiers has been publicly displayed since World War I. The rehabilitation of combat-injured soldiers into socially productive men who would contribute to the regeneration of national life involves the dual task of making these men fit into their

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altered bodies and helping them to reengage life as husbands and fathers as well as productive citizens of the State. It is fascinating to see how the conjugal relation is seen as the key to their rehabilitation: Wool interprets this in terms of the place of carnality within the imagination of sociality under neoliberalism. The irony, of course, is that such notions of carnality, sexuality, and gender not only define the market place but are incorporated within the State programs of rehabilitation. The emphasis on restoring the masculinity of the injured soldiers and their own anxiety around their masculinity are evident in the cases of, and interviews with, the injured soldiers and their nonmedical caregivers. Wool’s analysis raises the important question of what rehabilitation for female soldiers might mean within this scenario, in which the return to civil society is so strongly knotted with the idea of remaking men as husbands and fathers. Though Wool sees her problematic primarily in terms of a critique of the social underpinnings of ideas about masculinity, we could ask if the place of carnality under neoliberalism that she speaks of is a problem of “opinions” and “ideologies” alone, or if, for the individuals who are injured, the ideas of masculinity become so embedded in their bodies that healing might be hard for them to imagine in other ways. The issues of existence and identity cannot be so easily disentangled, which is obviously not to say that other ways of imagining masculinity are not available theoretically—just that within the forms of life that grew the modes of participation in war, perhaps modes of healing, too, grew as part of that very life. When can we say that a language game is complete? asked Wittgenstein, pointing us to the fact that we must leave open the idea that new experiences will come to be coded in the natural and the social to grow our forms of life. But we cannot determine beforehand how such streets and suburbs in the cities of words and of life will grow. Aslihan Sanal, in her chapter, “Key Acts” (chapter 23), tells a fascinating story of the intertwining of religious and secular notions in the strategies for encouraging cadaver donations in Turkey’s organ transplant programs. Sanal’s major claim is that behind the surface symbol of “organ donation” lies the dominant (what Victor Turner might have called “root”) symbol of sacrifice that is indicated not only in semantic echoing but also at the level of affects mobilized by the two forms of action. She shows how the stigmatizing and religiously condemned action of suicide in women is turned into the redemptive event of nourishing another person through the act of cadaver donation. There is a very interesting analysis of how the publicity around the event of suicide and donation of organs becomes the occasion for another kind of publicity by the transplant community of encouraging people to consider cadaver donation. The mobilization of the symbol of sacrifice helps to overcome the taboo against what might have been seen as the mutilation of the body—for the body must be returned whole to God, to whom it rightfully belongs. Here, too, the secular body and the religious body become aspects of the same body in death, in which the end of biological life is seen to regenerate the lives of others much as the animal killed in sacrifice generates life. Nancy Rose Hunt’s chapter, “Life, Death, and Reverie” (chapter 24), asks what is to be gained by a methodological shift away from the temporal logic of the event-aftermath

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that forefronts the atrocious violence in the Equateur region of King Leopold’s Congo Free State in the 1890s and 1900s and its aftermath in terms of the inability of women to give birth due to either high rates of infertility or miscarriages, toward a “vernacular zone,” in which we may discern “a sometimes joyful, sometimes expulsive, domain . . . that produced horizons, reverie, and insurgency” (433). These distinct registers or currents of the archive—the colonial biomedical state concerned with restoring reproduction and a vernacular zone that Hunt describes in terms of flight, refuge and, respite, and in terms of the festive—singing, dancing, anticipation, and hope—are not parallel domains. They sometimes intersect; importantly, the vernacular shows how the colonial state is nervous, imagining itself to be surrounded by dangers of all kinds and developing a security apparatus in anticipation of emergency and death (see the related discussion in the volume introduction on the interpenetration of the biopolitical and security state in colonial governance). This apparatus is joined in the vernacular zone by eviction reverie, a collective daydreaming in which besieged natives are rescued by heroic figures whose identity changes according to the collective imagination. As Hunt puts it, life and death, like healing and harming in African therapeutics, intermingle in eviction reverie. Instead of relying on the repertoire of trauma theory or assuming that what the historical record shows in the vernacular is the loss of the real, Hunt stunningly shows how the impulse toward life is already contained within a zone of death, and that it does not simply follow in the aftermath of an event of violence. Together, the chapters in this section help us to look at healing as a way in which life—or Dasein, as the existence human life takes—is the work of making these poles speak to one another so that each contains the seed of the other.

REFERENCE

Bloch, Maurice, and Jonathan Parry. 1982. Death & the Regeneration of Life. Cambridge: Cambridge University Press.

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18 THINKING ABOUT THE SECULAR BODY, PAIN, AND LIBERAL POLITICS Talal Asad

When we hear someone speak of a religious body, we tend to think of it as the body of a believer. Can we also speak of a secular body? If so, what might that mean? And how is “the secular body,” whatever it may be, related to liberalism and modernity? Does pain have an ineradicable place in secularism? Is Christianity, with its sacred narrative of pain and suffering, nevertheless the immanent frame of modern secularity? In what follows I speculate about the “secular body” as the site of sensibilities and convictions, and the ways in which it may or may not be distinguishable from a “religious body.” I do so by paying special attention to pain, because it directs us to the human body as a finite organism. I also consider what relevance the secular body might have for secularism as a political system, particularly as a precondition for democratic life, and whether the emergence of secularism must be told in terms of a theological narrative. Let me begin, then, with the painful body. Consider this: I wake up one morning in deep pain; anxiety, wild speculation, and fear follow. The pain pushes me/my body into a particular interpretive language, an interpretation that is at the same time a translation. It leads me to the conviction that I am ill. A firm conviction about the pain as more than itself—as a clue to some hidden meaning—in the absence of “real” evidence is usually called “hypochondria.” I refer to hypochondria not to suggest that we sometimes misinterpret perceived objects within the external world, including bodily sensations, or that we sometimes imagine that something exists when it really doesn’t. I take “hypochondria” as alerting us to the fact that relations between the self and the objective world—or between the “mental” and the “physical”—are often

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accidental, post hoc, recursive, and practical. It is one way of problematizing the standard distinction between the spiritual and the material, between belief and action. Charles Taylor (2007), a leading authority on Hegel, has proposed that the “buffered self” is a precondition of modern secularity, a self that has learned to interpret the world objectively because it has separated itself from the world while remaining in a dialectical (i.e., narrative) relationship with it. This reference to disjunction seems to me useful but not quite adequate, because what matters is not simply disconnection of the body/self from the world, but the multiple ways in which body and world have come to be severed or yoked together. The hypochondriac’s encounter with his own feelings is real enough, but the medical experts (and skeptical friends) tell him they are not real. The category of “hypochondria” as an illness is, in an obvious sense, modern and secular—by which I mean simply that it is a product of biomedicine, of an institutionalized practical knowledge that presents itself as rational and progressive, and sometimes as an epistemological model that can be opposed to theological definitions and explanations of unwellness. The hypochondriac belongs to a modern, ruptured world; yet an individual’s deep entanglement with the sensations of her own body (an object in the world) is not easily described as “buffered.” Sometimes the hypochondriac’s body may be called “religious,” but this is not because he cannot distinguish the truth of his own body from forces external to him, and so should be called “superstitious/enchanted.” It is identified as “religious” (or “secular”) for other, more complicated reasons. What might these be? Rather than analyzing the institutional conditions within which “religious” or “secular” attitudes are cultivated, one might look directly at the body’s responses to pain for an answer. Pain is a function of the living body, and the life of the secular body is finite, and so, too, its ability to feel pain. Thinking about pain as an unsolicited—and unwelcome—state of the body as a living body may allow one to conclude that it is not pain as such that is secular or religious but the way it is lived by the subject. Furthermore, pain is especially interesting because of its ambiguous position between the “material” and the “ideal,” or “the secular” and “the religious.” “Hypochondria” (like “hysteria”) tests the limits of sympathy for another’s suffering. Although the pain, anxiety, and fear are genuinely experienced by someone labeled a hypochondriac, in ordinary life these feelings tend to be dismissed as “imaginary” and therefore as not worthy of being taken seriously. It is the fact that he believes he is ill when he is not that makes him a figure of fun. That critical act of unmasking is, one might say, a secular take on the unwell body. But is “hypochondria” a real disease or just an imagined one? Modern medicine has now decided that it is indeed a disease, one of several identifiable “anxiety disorders” (anorexia, claustrophobia, etc.), and that although there may be physical disorders that indirectly create the experience of pain, the disease known as hypochondria can be successfully treated— or more precisely, because it is the object of investigation and therapy, hypochondria is a psychological disease (Goodman 1994). What was once thought to be an instance of mere illusion is now regarded as in an important sense real. The authoritative medical view

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(which today even “religious” people in a secular state may accept) is that the pain and fear experienced by the hypochondriac are not “healthy”: there is no place in a healthy body for pain and fear that isn’t based on “something real.” The hypochondriac may feel pain, but in taking that pain to be a sign of hidden illness he reveals himself to be unwell. His painful feelings are not disputed; only his obsession with and his interpretation of them are. So here is a familiar perspective on pain: pain as such is “real,” capable of being cured or alleviated, and as a signifier of something “unreal” it should be disabused. But there is also another perspective on pain that doesn’t involve the real/unreal opposition, to which I now turn. Many religious and nonreligious persons have used their hypochondria to secure spaces for living in a particular, productive way. For them pain is not merely a sign of unwellness (something to be explained and treated) but a means of resolving problems they encounter. The hypochondriac is not simply an embodied subject; he has a particular body with a unique history. It is not merely that his alarmist reasoning may be mistaken, or that the effect of his visceral register on his beliefs is often not taken into account in explanations of behavior. In that particular body, illness and pain might also be a claim to much desired privacy, a distancing from the world and its unwelcome demands; in short, it may be a distinctive way of living and working through suffering. The hypochondriac in a sense embraces pain rather than rejecting it and seeing it entirely as a deficit. The central question here, therefore, is not the truth or untruth of the hypochondriac’s relation to the world, not his lack of satisfaction with his life, not even the ethical status of his pain (“pain can sometimes be ethically valuable/pain is essentially and always evil”). It is what the grammar of statements about his pain are, what they show about his relationship to himself and to others in his life. So—what might “the secular body” be? I want to draw attention here to something other than the act of explaining or justifying pain, something that is evident in the public life of the body (shown by it and not explained, as Wittgenstein would say), something that doesn’t refer to “ritual-and-belief” as a consolation but to a de facto living out, far-reaching or temporary, of life itself. In his history of nineteenth-century British secularism, Edward Royle has shown that this movement was initially linked strongly to both political and epistemological reform. Rationalistic (i.e., “antireligious”) explanations of seemingly extraordinary experience, political demands for inclusion, and endorsements of an ideal universal morality (one that was “truly democratic”) were all at the center of what one of its leaders, George Jacob Holyoake, called “secularism” (Royle 1974; see also Royle 1980). The general usage of the term secularism today is explicitly political rather than epistemological, perhaps because it is assumed that the philosophical battle of truth has been won but the political battle for tolerance has not. Regardless of whether one “believes” in secularism, however, its commonly accepted grammar can be explored with the aim of tracing the range of possible modes of living that it articulates, without making judgments about its truth or ethical value.1 Thus Winnifred Sullivan has recently argued that the

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legal discourse of a secular state operates in ways that are contrary to the general sense of “secularism” as a political doctrine: complete separation from and strict neutrality toward all “religions” turn out to be neither a good nor a bad thing but impossible (Sullivan 2005). So how does the grammar of “the secular” work for the individual body that suffers pain? What role does pain have in the psychic structure of the political body? In the West, justifications of the desire to punish the body—to make it suffer pain— lie partly in Christian theology, especially in the theology of atonement. What kind of Christian and post-Christian body is being defined and regulated when punishment is shifted entirely to this world? Timothy Gorringe, in his history of the significance of the Crucifixion for secular theories of punishment, describes how “[t]he death of Christ dominated the ‘structures of affect’ of Europe for five hundred years, and in so doing they pumped retributivism into the legal bloodstream” (Gorringe 1996, 224). The legal bloodstream sustains the life of the liberal political body. So the gradual “humanization” of theological doctrines on punishment in the late nineteenth and twentieth centuries that Gorringe charts—and especially the increasingly permissive attitude toward the pleasures of sex that liberal Christianity took—alert us to how one might think not only about the secular body but also about aspects of the secular state. Punishing the captive body is still regarded as necessary even if it isn’t justified in theological terms, and its secular justifications (prevention and suppression of crime, reaffirmation of social and political solidarity, rehabilitation of criminals) cover up a strong desire to witness the “proper” infliction of suffering. There is clearly more to the “secular body” than disbelief in supernatural beings, a self that is buffered, the demand for causal explanations of pain, or the acceptance that one should live tolerantly with the followers of other beliefs. What might this “more” be? Consider this: Christians and non-Christians, believers and nonbelievers, live more or less the same kind of life in modern capitalist society and in that sense can be said to have similar bodies. Put another way: unless you knew someone well you couldn’t tell whether she was a believer merely from the way she spoke or behaved. What does this say about the secular body? One answer may be that “belief,” where it exists among liberal moderns, is so deeply repressed that it has at best a very tenuous connection with observable behavior. Consequently, the connection can be easily denied altogether, as in this statement of the chief minister of Ontario quoted in a local newspaper: “ ‘As premier, I have made decisions that defy the beliefs of my own religion,’ Mr. McGuinty said, citing his support for same-sex marriage and abortion. ‘My Catholicism, my private faith, does not determine my position.’ ” (Agrell 2007). In this perspective, political life is profane whereas belief about the sacred is located in a private self (thus paralleling the modern notion of pain as a purely private experience). And even if that belief can be publicly acknowledged as a belief, it cannot be publicly put into action, because not everyone can be persuaded by reason to accept it—and according to secularism as a political doctrine, beliefs may not (cannot) be imposed by force but established by persuasion. However, the familiar opposition between “persuasion” and “coercion” is less secure than is often supposed. As a

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philosophical name for a discursive process, “reason” (“reasoning”) covers a range of persuasive (and dissuasive) discourses: threats, promises, hidden appeals, and indirect influences. Persuasive discourses can be deceptive as well as rational at one and the same time—as anyone who has reflected on intimate relationships knows. They can be modes of conquest as well as illuminating ways to the truth. “Belief” as an implicit relationship to others and oneself can be generated in many ways. According to secularists like Sam Harris, the matter is much simpler: “Belief is a lever that, once pulled, moves almost everything else in a person’s life. Are you a scientist? A liberal? A racist? These are merely species of belief in action. Your beliefs define your vision of the world; they dictate your behavior; they determine your emotional responses to other human beings” (Harris 2004, 12). So in contrast to McGuinty (who is able and willing to cordon off his own Catholic beliefs), for Harris belief is for everyone the causal basis of all one’s behavior, all one’s attitudes. One has to have the right kind of beliefs in order to act reasonably and tolerantly, and since religious beliefs are by definition irrational and intolerant, they must be forcibly eliminated, even if this involves inflicting great distress and pain on the religious. The religious must be punished because people whose vision of the world is determined by religious beliefs are themselves impelled to penalize nonbelievers without just cause. Harris wants to root his vision of the “tolerant” state in secular knowledge, in beliefs that are based on “reason,” because reason is the only path to certainty. (Certainty, however, is not a matter of abstract “reason” or “logic,” as Wittgenstein pointed out; it rests on conviction arising from what lies around it. And one might add that what “conviction” implies—as the judicial sense of that word indicates—is a readiness not only to judge the truth, but to employ force and inflict punishment for the sake of truth.) What the McGuinty example shows, therefore, is that it is not “secular beliefs” (whether of Harris the liberal atheist or of McGuinty the liberal Catholic) that directly protect against intolerance and unreason. It suggests that it is the disjunction between private conviction (private in the sense of being a claim to immunity from interference by others) and political behavior—together with the exercise of order-maintaining force— that contributes to a particular conception of “tolerance.” Thus although both Harris and McGuinty have an equal claim to being “secular,” they are not the same: the former desires to expand the scope of good (i.e., rational) beliefs; the latter insists on a disjunction between private beliefs and political behavior for defining reasonable and tolerant behavior. Whereas McGuinty looks to minimizing distress in a plural society, Harris seeks to maximize truth in an irrational world by using pain to eliminate pain. The latter takes up a passionate and hostile attitude, the former an attitude that represses passion. In this respect they together recapitulate the history of liberalism from the early nineteenth century, when it was an aggressive and passionate movement, eager to overturn hegemonic authorities and exclusions, until today, when it seeks to contain and repress passions in the routine politics of the state. I say “routine” because the fear of violence— especially violence produced by “religious” passions—lies at the heart of the modern

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state (and in secularist thinking), and it is evoked again and again in “crises” by the modern liberal states. But that evocation now serves the consolidation of dominant power and responds to a paranoid preoccupation with enmity. But the relations connecting belief, pain, and worldliness to one another are more complex. For epistemological secularists, the living human ends with death. The end is final and there is nothing else. Pain accompanies the dying body. Left to itself, the body after death putrefies and eventually disintegrates into its chemical components. And yet the law has long recognized that a person’s will extends beyond death, disposing of his or her properties in prearranged ways: the body may be cremated, but the personality of the deceased lives on in palpable ways; indeed some aspects of that personality (its intentions regarding property) can be put into effect only after bodily death. Henry Maine ([1861] 1950) recounted how this legal fiction, indispensable to the continuity of secular liberal society, was genealogically related to “ancient beliefs” about life after death. So, too, the law’s requirement that cadavers be treated with respect: the dead body may not feel pain, but it appears nevertheless to retain the right to dignity that the person possessed in life. It is as though the legal personality to which the cadaver once belonged continues after death, indicating that the living organism may not always be essential to human personality. Yet this continuity of personality bestows on the cadaver something it otherwise does not possess. Which is why even secularists are shocked at seeing images of dead bodies thrown carelessly in a heap. (The law finds it easier to protect the dignity of a dead body than a living one, because in death all cadavers are evidently equal.) Is it possible to say that because it feels no pain and entertains no illusions, the human cadaver is the ultimate expression of the secular body? If so, this would mean that it is not a particular kind of discipline that defines secularity but belief in an essential quality of the body. But then couldn’t one also say that the dignity it possesses in the eyes of the living, and the reverence with which it is to be treated, bestow on the cadaver a measure of sanctity—and therefore a quasi-“religious” status? There is a more recent problematization of the secular body as one that rejects certain illusions (principally, that there is life after death) and that clings to life in this world precisely because of its finitude. The anthropologist Abou Farmaian has recently produced a rich account of the U.S.-based groups that have developed the ideology he calls “immortalism.” Immortalists seek an indefinite extension of human life by the use of scientific means—specifically, cryonics, biogerontology, and artificial intelligence. Paradoxically, immortalism is so committed to the world that it aims to overturn a basic principle of secular life as understood hitherto: that there is no life after death. Immortalists, Farmaian argues, believe that given the development of scientific knowledge, human beings can enjoy life after death, and it is precisely their attachment to life in this world that leads them to their faith in the truth of this proposition (Farmaian 2011). Let me return to pain and unwellness as expressed in what Henry Maine called “corporation aggregate” (the collective body) and “corporation sole” (the individual body).

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In one of his famous meditations, John Donne reflects on faith and the body through the image of microcosmos: the individual body mirrors the city, the city mirrors the earth, and the earth mirrors the heavens, all in concentric fashion, and their common (worldly) center is disease and decay—a secret rebellion against order: God knew many heavy sins of the people, in the wildernes and after, but still he charges them with that one, with Murmuring, murmuring in their hearts, secret disobediences, secret repugnances against his declar’d wil; and these are the most deadly, the most pernicious. And it is so too, with the diseases of the body; and that is my case. The pulse, the urine, the sweat, all have sworn to say nothing, to give no Indication, of any dangerous sicknesse. My forces are not enfeebled, I find no decay in my strength; my provisions are not cut off, I find no abhorring in mine appetite; my counsels are not corrupted or infatuated, I find no false apprehensions, to work upon mine understanding; and yet they see, that invisibly, and I feele, that insensibly the disease prevailes. The disease hath established a Kingdome, an Empire in mee, and will have certaine Arcana Imperii, secrets of State, by which it will proceed, and not be bound to declare them. (Donne 1952, 428–29)

Implied in this text is an affinity, within the illness modern medicine now calls hypochondria, between “religious”—specifically Christian—and “secular” elements, between the refusal of the body’s fluids (blood, urine, sweat) to disclose anything of its hidden disorder on the one hand, and secret disobedience to God on the other, between corruption within earthly bodies and disease itself as a political form. Yet Donne’s account of his corporeal condition is not simply a medical category mistakenly expressed in theological guise. It assumes a particular mode of life and a polity in which some norms of health (social, theological, corporeal) are to be promoted and other norms discouraged, in which the illness, decay, and death of the state are echoed in the disease, disintegration, and death of the individuals who make it up. It is not just the body but the living (ensouled) body that is invoked. In seventeenth-century political theory this affinity was expressed in the metaphysical view that the individual in a state of nature possesses the same inalienable right to defend himself from the threat of death as the sovereign (state) does. “Donne,” notes Ramie Targoff (2008, 22), “was haunted throughout his life by feelings of the awkward dissociation between his body and soul: the tensions that arose between their respective needs; their irreconcilable states of health or illness; the occasional discrepancies between their objects of desire.” Donne’s theological uncertainties led him to agonize over the possibility that the rupture between body and soul at death might not be healed at resurrection, to wonder anxiously whether, in being given a new, sinless body at resurrection, his soul might not be reunited with his own familiar body. But his faith gave him the confidence that he, John Donne, would be present—his body-and-soul as one— beside Christ in heaven as He had promised His believers. Donne’s theological anxieties and preoccupations entered into and shaped his poetry, his prose, and his life, making his very act of writing into what Targoff memorably calls an instance of “the word made

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flesh.” We might (counterintuitively) call Donne’s body “secular”—not because he was emotionally attached to it but because its earthly experience was indispensable to him as a Christian preacher, poet, and lover—to his worldly hope in the resurrection of the body after it has perished. But what would be gained by calling it secular—other than the suggestion that it is merely worldly experience that explains Donne’s hope and anguish, despite the fact that the latter were soaked in theological language? During his tormented life, Ludwig Wittgenstein was convinced that his anguish—frequently expressed in bouts of wanting to commit suicide—was due to his own “baseness and rottenness.” Modern medical science would certainly not categorize that state as one of “wellness.” And yet, according to his biographer, Ray Monk (1991), for Wittgenstein his ailment constituted a positive state of affairs, because in trying to rectify the “unworthiness” he glimpsed in himself, he was in effect living religiously (185). On occasion he was convinced that he was “physically” ill because of abdominal pains and high temperature (which then turned out to have been normal) (374). Monk comments on the controversy over Wittgenstein’s homosexuality: “Wittgenstein was uneasy, not about homosexuality, but about sexuality itself. Love, whether of a man or a woman[,] was something he treasured. He regarded it as a gift, almost as a divine gift. But . . . he sharply differentiated love from sex. Sexual arousal, both homo- and heterosexual, troubled him enormously. He seemed to regard it as incompatible with the sort of person he wanted to be” (585). It was this deep internal conflict, and the signs by which it was to be recognized (sensibility is too weak a word here), that made Wittgenstein obsessed with the need for “confession,” for being “ruthlessly honest” with himself and his bodily desires. As in depth psychology (he was familiar with Freud’s writings, although not uncritical of them), corporeal signs were indicators of something hidden and therefore in need of interpretation. Rightly or wrongly his suffering, and his continual attempts to interpret and understand himself, were central to the way he lived, the way he interacted with others, and the way he thought as a philosopher. He was deeply absorbed by the signs of unwellness in his own body, and by his repeated—and repeatedly failed—efforts to overcome it by his “religious task.” Wittgenstein spoke of “the soul” not as a part of the human being (as Donne did) but as something best represented by the body (“The human body is the best picture of the soul” [Wittgenstein 1953, pt. 2, sec. 4]). Should we call his a “religious body” even though as an adult he never practiced Catholic rites or presented himself as a “believer”? At the very least one must conclude that if we are to call him secular, this is not because of his disciplined sensibilities—and certainly not because of his denial of “supernatural” beliefs. He might be called secular (but why not for the same reason “religious”?) because he tried to live his painful body integrally, without invoking the duality of flesh and spirit (body and mind). If “hypochondria” is a particular reading of the secular body, how does it compare with other readings of pain that have emerged or disappeared in history—like “hysteria,” say? What can hysteria tell us about the secular body? Early-modern medical treatises sometimes spoke of “hysteria” as the female version of “hypochondria,” as a perversion of the virtue of “sensibility.” By the beginning of the

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nineteenth century “hypochondria” was applicable to women as well as men, and considered a kind of heightened sensibility. In her study of the eighteenth-century concepts and practices of privacy Patricia Meyer Spacks makes an illuminating comparison between what was understood by sensibility and later, in nineteenth-century medical thought, by hysteria—that is, between sympathy offered and sympathy denied, between public and private reactions to pain (Spacks 2003, 11–12). Spacks’s comparison makes it clear that sensibility (an admired ability to respond generously to another’s suffering) is the inverse of hysteria (an embarrassing expression of pain demanding but not deserving sympathy). Sensibility and hysteria are both said to be uncontrollable responses in the subject’s encounter with pain; each articulates the relationship of the individual person with worldly power. Because hysteria is seen as transgressive, as an expression of indiscipline, it is taken as a sign of the subject’s need for cure; the appropriate response of the observer is not compassion with the hysteric’s anguish but distance from it. Whereas sensibility was an approved expression of the tactful feelings of the private self, the publicity of hysteria, the inarticulate passion it displayed, was a sign of a troubled interiority that therefore indicated something hidden. Yet the performance of sensibility also encouraged concealment by invoking privacy; unlike hysteria, sensibility discouraged the public knowability of the subject’s emotions, but it was not a sickness calling for treatment. Thus the sympathy cultivated and offered (sensibility) and the sympathy desired and denied (hysteria) that made up emotional aspects of the emerging modern subject discussed by Spacks, taken together, reflect in miniature a political contradiction in modern liberal society. On the one hand, there are private spaces of “freedom” that secular power cannot legally invade; on the other hand, there are the secret spaces of “sickness”—the incidence of illegitimate violence—that the state must penetrate, identify, and eliminate if it is to defend the equal freedom of each body against internal and external enemies. The relation between the sick body and secular authority that can interpret its ailing signs correctly and respond properly to it is thus at once political and individual. For the secular story goes that in premodern times the hysteric could not be scientifically treated because she was believed to be possessed by divine or demonic forces. Her irrational individual violence— exactly like the irrational collective violence of religious believers—could be treated properly only once secular knowledge and practice had triumphed. And as secularists overseeing a more humane world, we now require that religious discourse remain in its assigned space and not encroach on either science or politics. But that story isn’t quite adequate to the reality the hysteric now lives, because there are different structures of pain itself. Here is another example: Like the hypochondriac (though in his own special way), the sadist is obsessed with pain and lives in a disjunctive world. This disjunction, however, does not distinguish types of belief (religious and secular, as Harris does) or the sanctity of the private from the profaneness of the political (as McGuinty does). It opposes the sadist’s unsatisfied desire on the one hand to his possession of the victim’s body on the other. Sadism is a late-eighteenth-century arrival articulating the sovereignty of human

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reason and individual desire. It is repeated and repeatedly condemned in the centuries that follow, and attempts are made to box it in as a self-contained horror—but without success, for sadistic desire has a strong tendency to enter the motives and feelings of those considered “normal,” and to seek from there its own readings of the truth. In his history of madness Michel Foucault wrote that “sadism” was not simply the name given in the eighteenth century to a practice that had always existed but a striking cultural fact that appeared at that moment—what he called the mark of a great transformation of the Western imagination (Foucault 1972, 381). (It appears at the same time as those great classical texts of reason and humanity, the American Declaration of Independence and the French Declaration of the Rights of Man and Citizen.) Later, in The Order of Things, Foucault relates sadism to the complex rise of the life sciences in the late eighteenth century (exemplified by Cuvier’s Lessons of Comparative Anatomy), when the human emerges as animal (Foucault 1973, 277–78). Sade was an individual, but sadism for Foucault is a collective phenomenon that marks an appetite without limit—a force that becomes a source of human singularity, of human monstrosity, that is at once implicit in but goes beyond man’s animal nature. If human reason explodes divine law by subordinating itself to life functions, then for Sade murder—“killing for life”—is a part of nature, not of law. The secular state’s willingness, like that of the religious state, to kill at home and abroad is an expression of that nature. In an interesting commentary on Sade, Georges Bataille notes that when the torturer inflicts punishment on his victim, he normally uses the language of an established authority; his violence is thereby given an impersonal, silent character; he speaks, that is, not in his own name but in the name of authority. In Sade’s novels, however, those who inflict pain do speak for themselves, claiming that in enacting their cruelty they are truly following Nature. This claim, it might be said, renders their bodies “secular.” However, there is more to the sadist’s obsession with pain than the invocation of Nature in justifying it. Regardless of whether it is treated as a sickness or as a moral fault, the sadist’s enjoyment of another’s pain has a strong erotic dimension. According to the U.S. Bureau of Justice Statistics on Homicide, of all children under age five murdered from 1979 to 2005 in that country, 60 per cent were killed by a parent; the statistics on violence by spouses and lovers is also very high (Fox and Zawitz, n.d.). In Europe the violence sustained by women from their husbands or lovers is no less impressive: “That is what happens in Europe,” writes Ignacio Ramonet (2004). “The violence perpetrated against women by a male partner has reached extraordinary dimensions there. For Europeans from the age of 16 to 44, brutality within the family has become the primary cause of death and disability—above even road accidents and cancer. Depending on the country, between a quarter and a half of all women are victims of abuse. . . . In all fifteen states of the European Union (i.e., before its expansion to twentyfive) more than 600 women die each year—almost two a day—from sexist violence within the family circle” (Ramonet 2004).2 The twin desires of loving, and of hurting and killing, to which these large figures point make the urging of fellow feeling toward vic-

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tims and antipathy toward perpetrators seem inadequate. Something more complicated than choosing pleasure-in-inflicting-pain-and-death (an abomination) is at work here. Nor are sadistic acts and their compulsive repetition merely the work of psychopaths. One might see them as being in part expressions of the fact that in modern secular society individual desire is a high value for every body. The question, then, is not simply how widespread “sadism” has been since the late eighteenth century. It is whether the significance of “sadism” lies only in what we are conventionally asked to attend to—the reprehensible motives of a psychopath, and the secular treatments that society provides for his sickness (medication and/or physical constraint). The interesting question is this: What precisely does the cruelty of sadism consist in? Does it tell us anything about the secular body and the secular state? Here is one interesting answer: Although it has become common since the nineteenth century to refer to “sadomasochism” as the name of a single pathology, Gilles Deleuze (1991) insists that sadism and masochism are two quite different conditions that should not be confused.3 In the work of Masoch, he points out, “[w]e are no longer in the presence of a torturer seizing upon a victim and enjoying her all the more because she is unconsenting and unpersuaded. We are dealing instead with a victim in search of a torturer and who needs to educate, persuade and conclude an alliance with the torturer in order to realize the strangest of schemes. . . . The sadist is in need of institutions, the masochist of contractual relations. The middle ages distinguished with considerable insight between two types of commerce with the devil: the first resulted from possession, the second from a pact of alliance. The sadist thinks in terms of institutionalized possession, the masochist in terms of contractual alliance. Possession is the sadist’s particular form of madness just as the pact is the masochist’s” (20–21). The masochist is an educator who fashions the dominatrix, dressing her and telling her what hurtful words she must utter and what physical pain she must subject him to. Thus, unlike the cruelty of the sadist, here “it is the victim who speaks through the mouth of his torturer, without sparing himself” (22). What Deleuze does not say is that the hypochondriac’s symptoms and the masochist’s schemes (so different in other respects) have a similar psychic structure of self-imposed suffering that may sometimes open up creative talents—by shutting out the world, by obsessive attentiveness, and even by the continuous desire and repeated failure to control oneself. At any rate, these two kinds of cruelty—the one emerging apparently from persuasion (masochism) and the other from coercion (sadism)—are thus not the same. Both exchange (contract) and forceful possession (property) are of course found in all historical societies, but they are together uniquely constitutive of liberal democratic states (based, as we are often told, on the idea of a founding social contract) and modern empires (driven by the appropriation of land and labor as property).4 One might venture that, as channels for cruelty, contract and property are together in large part how bodies are distinctively connected to and disconnected from one another in modern societies. Might it be said that for this reason all bodies that flourish in the cruelties of capitalist

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society and modern empire are “secular”? Would it be too rash to say that—recalling the cadaver—the secular body is one that can thrive or decay only materially? Authorized possibilities of emotional expression of pain depend not only on whether they are evoked by depictions or realities but also on how the pain expressed is recognized. Pain, and compassion for pain, can fit into different stories. Christ’s suffering and death on the cross is essential to the redemption of mankind, and regardless of whether it is interpreted as divine satisfaction for human sins or as the divinely created paradigm of human injustice, the cruelty of the crucifixion cannot be expunged from the Christian story. In a secular key, Pamela’s suffering, in Samuel Richardson’s eighteenth-century novel by that name, allows the redemption of Mr. B., her persecuting employer. Both cases of suffering are directed at evoking the virtue of compassion, but Pamela’s pain is felt to be gratuitous; Christ’s is not. Indeed, Henry Fielding’s parody Shamela suggests that there is something about the rhetorical structure of redemption stories such as Pamela that allows them to be satirized in a secularizing world. For secularists, publicly exhibited suffering endured for the sake of another individual or collectivity (“a sacrifice”) may be suspected of having an ulterior motive—one that justifies discounting its claim to sympathy. When pleasure is taken, in and through another person’s painful experience, by integrating it into one’s desire, it is no longer quite gratuitous. If the sentimental readers of Pamela embraced her miseries as their own, how should we understand their instrumental use of that emotion? Entering into Christ’s passion was an important part of religious devotion in the later Middle Ages, and again in the eighteenth-century religious revival (Mack 2008). Compassion is not unique to modern Western society of course—nor is cruelty. What seems to be original and what links bodies to one another in different modalities is the fusion of compassion and cruelty into what the eighteenth century sometimes named “delight.” This theme has a long history, but the Scottish moralists addressed it in a revealing way. Thus David Fordyce wrote in 1754 of the man of sensibility, the benevolent man: “It is true, his friendly Sympathy with others subjects him to some Pains . . . yet to give a loose to it is a kind of agreeable Discharge. It is such a Sorrow as he loves to indulge; a sort of pleasing Anguish, that sweetly melts the Mind.”5 Can this be seen as articulating another aspect of the secular body? Cultural historians have described how the idea of sympathy, first propounded by enlightened moral philosophers, gave rise to a distinctive genre of literature and art: “If pornography,” one of them writes, “is best defined as the representation of sexual behavior with a deliberate violation of moral and social taboos, then the growing violence of pornography in the late eighteenth and nineteenth centuries is attributable to the new shock value of pain within a culture redefining it as forbidden and therefore obscene” (Halttunen 1995, 318; emphasis in original). Thus pictorial depictions of sexual flagellation, virtually unknown before the eighteenth century, become common in the nineteenth and twentieth centuries, and point like so much else to the pleasure taken in exhibitions of

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pain, precisely when it was forbidden or frowned upon (Halttunen 1995, 315; see also Halttunen 1998). The pleasure obtained from actively subjecting the other to pain is not, of course, the same as feeling oneself into another’s suffering—even if that, too, can be experienced, in Fordyce’s orgasmic metaphor, as “a sort of pleasing Anguish, that sweetly melts the Mind.” The point I want to stress, however, is that empathy is not a simple emotion, or one that is necessarily benign in secular, liberal culture. It is consistent with the satisfaction felt at observing the “justified punishment” of a monstrous criminal, the normal cinema audience’s enjoyment of torture and death finally inflicted on the villain. How to understand this well-known desire to see certain kinds of individuals treated cruelly, to find satisfaction (pleasure) in that spectacle? How to explain the enormous popularity of violent movies that depict realistically human agony, dismemberment, and death?6 Of course representations of cruelty on the screen belong to the imaginary world of cinema and should not be taken as clear evidence of incitement to cruelty, as many who denounce it often do. But it is still a human world—whose experience can be named and is meant to be enjoyed aesthetically precisely because it appears as an imaginary representation, presented in a particular time and place, but in itself as “real” as anything else, as the hypochondriac’s sickness. They are occasions for enjoying passions among normal persons that neither polite society nor fastidious persons find worthy of respect—except in the guise of art. Could one say that this pornography of pain—drawing at once on the legal prohibition of cruelty and on its secret pleasure—is an option available typically to the modern secular body? Of course, spectacles of cruelty are at least as old as the gladiatorial games in ancient Rome, but my question has to do with the attitudes to pain when it is located in structures that combine prohibition with pleasure. I have been trying to suggest that thinking about the “secular body” by way of pain directs attention to disjunctions, parallels, permeations, and recursivities, and that this gives some sense to the notion. I have found it more useful to approach the question this way than to use the logic of dialectics. It is, incidentally, partly the attractiveness of dialectics that accounts for so many scholars in our time wanting to explain our contemporary world (capitalism, liberal democracy, secular subjectivity, etc.) through a narrative of “Christianity.” Writers as disparate as Carl Schmitt, Francis Fukuyama, Alain Badiou, Slavoj Zizek, Marcel Gauchet, Charles Taylor, and Jacques Derrida are among the many contemporary theorists who have held to one version of this position or another. Here is Jean-Luc Nancy (2008, 385): “After all, ‘modern’ signifies a world always awaiting its truth of, and as, world [sa vérité de monde], a world whose proper sense is not given, is not available, is, rather, in project or in promise, and perhaps beyond: a sense that consists in not being given, but only in being promised. Now, is this not characteristic of Christianity and monotheism in general: the contract or the alliance of the promise, the commitment that commits before all else to be committed to it? In Christianity, the promise is at once already realized and yet to come.” The move from God to man and back dialectically to God through death (incarnation, crucifixion, resurrection) is part of Christianity’s

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founding story, part of the promise that is said to be handed on to the secular project of modernity: democratic ideal, suffering and sacrifice for a just future, a restored humanity at once historically situated and transcendent. “Henceforth, the democratic ethic of the rights of man and of solidarity . . . constitutes, in sum, the durable sediment of Christianity” (Nancy 2008, 387). For Nancy the deconstruction of Christianity is at one and the same time the construction of secularism. And yet: what logical necessity is there for the move from the incarnation of God to secular humanity? Doesn’t the absence of the resurrection in humanism evacuate what is absolutely central to the Christian story? Doesn’t the body that is willing to embrace pain (as in the latter) stand in opposition to its utter rejection (as in the former)? The only way that “secularism” can be read as a trace of Christianity is by viewing the emergence of modernity-secularism-capitalism as the history of Spirit that is always identical with the secular, that advances dialectically with an increasing sense of being at home in the world and subject to historicized—that is, continually outdated—ethical principles. This brings me finally to an old question, one that hasn’t, in my view, been satisfactorily answered: Does democracy presuppose secularism? But there is a prior question about “democracy” itself: What is the difference between what is sometimes called a democratic ethos and representative democracy? Although this question can’t be answered briefly, here are a few points. When we speak of the former we often think of the desire for mutual care and respect, the concern to understand the other individual—to listen and not merely to tell—and the readiness to suffer for the sake of another. In the democratic ethos the individual is imbued with a sense of his finitude, of vulnerability and decay,7 and the spectacle of pain and disintegration in others evokes compassion. But the individual takes his or her own pain not simply as a sign (something to be interpreted) of being unwell but as a way of living positively without glorying in it. On the other hand, when we refer to representative democracy, we think of the state as the guardian of order and the focus of collective identity. We are aware of sovereignty as the power of a unified body, of the legal freedom and equality of citizens, of the state’s paramount concern with security. We recognize that the state is a collective body with the right to punish violators of national order (see Whitman 2005, 203) and to wage war in defense of its national safety. In a representative democracy the individual is the object of state protection from the violence of others, and the monopoly of violence is a means to that end. Pain in a liberal state is regarded as an evil to be used only reluctantly to deal with a greater evil (meeting the threat of external and internal enemies, treating physical disease). The liberal state recognizes the citizen’s right to dissent. It is, however, only in a secular democracy and not in a democratic ethos that a sharp distinction is made between conscientious objection (protected as religious/ethical freedom) and civil disobedience (regarded as a politically motivated violation of legal order). A democratic ethos, however, predisposes one to civil disobedience when it is ethically necessary. In a liberal democracy citizens are constitutionally represented by parties, but whom the parties actually represent, and why, is structurally ambiguous—largely because of the lobby system and the funding of elections.

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A democratic ethos, on the other hand, doesn’t work through representation but through direct connection. The two understandings of democracy presuppose different kinds of bodies, living in different ways. Or perhaps better: they can be seen as aspects of a single body pulled in opposing directions, at once “political” and “religious”—a tension that can never be finally resolved because each depends for its difference on the other. Although secularists lay claim to both senses of democracy, they often assert that democracy as a comprehensive concept can be traced to a particular religion, Christianity. However, it is certainly not the case that the democratic ethos is specifically Christian; it is found also in Judaism, Islam, Buddhism, and other traditions. And although in a demonstrable sense Christianity is part of the history of the modern state, that doesn’t prove the Christian origin of what is indicated by the term secular. It is one thing to seek essential origins, and quite another to identify elements of a tradition that have been retrieved, reorganized, and put to modern use in contemporary formations. One of those elements, as Gil Anidjar has begun to show us, is the obsession with blood in European history;8 another is the mutual constitution of love and cruelty. It is this recursivity that makes political theology a justification for today’s imperial wars, but that doesn’t mean that Christianity is the fundamental frame for understanding our present so-called secular world. The modern culture of commodity consumption, the new techniques of politicaleconomic control and discipline at national and global levels, the increasing degradation of the natural environment (making the planet a hostile place for human habitation)— even the growing consciousness that mass poverty should be eliminated—are not the products of a specifically Christian history. The accumulation of knowledge and power on which so much contemporary practice depends is generated by a complex institutional landscape with long-term consequences that are only partly foreseen. In fact, particular histories in different localities have shaped different norms of the healthy body, different experiences of unacceptable pain, and different stories of why a just distribution of suffering depends on the “separation of religion and state.” If I am skeptical of the claim made for secularism’s essential roots in Christianity, this is not because I argue that its real historical roots lie elsewhere, that secularism has no connection with Christianity whatever, but because I don’t think we are entirely clear about what we are seeking to explain with such confidence—or for that matter, why that explanation has become so urgent. So I conclude briefly. Instead of trying to determine the essential meaning of “the secular”—including the secular body—I propose a more modest endeavor: an inquiry into what is involved when “the secular” is invoked—who tries to define it, in what context, and with what practical consequences. I think it is more useful to inquire into how its historically shifting grammar identifies “the healthy body” and “the body that is sick,” in the political as well as corporeal senses. Grammar tells us that there is no definitive answer to questions like, What is “a secular body”? There are only conventional rules (connected to particular ways of life) that tell us when a particular usage of the term is regarded as correct or incorrect. It does not follow from this, of course, that grammar commits us irrevocably to present usage.

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I would like to thank Hussein Agrama, Gil Anidjar, and Abou Farman Farmaian for their comments and questions on an early draft of this essay. 1. This is elegantly shown in Dillon 2010. 2. Ramonet (2004) points out that according to the statistical evidence, such violence is as common in well-to-do families as among the poor. 3. I myself have mistakenly confused the two in Formations of the Secular. 4. Bhrigupati Singh (who is writing a book on Indian concepts of sovereignty) has reminded me that Gilles Deleuze, in A Thousand Plateaus, drew the idea of the contract/force couple from Georges Dumezil’s account of Indo-European concepts of sovereignty, Mitra-Varuna. 5. Quoted in Crane 1934, 205. 6. For a useful survey of the efflorescence of violent films in American cinema, see Murray 2008; see also Carroll 1990. 7. Hauerwas and Coles (2008) describe some of these attitudes by distinguishing what they call radical democracy from liberal democracy. 8. This is a theme that Gil Anidjar has begun to explore in an original way. See especially Anidjar 2009.

REFERENCES

Agrell, S. 2007. “It’s Wrong to Fund Private Religious Schools.” Globe and Mail, September 17. Accessed December 8, 2008. www.theglobeandmail.com/servlet/story/RTGAM .20070917.wlibs0917/BNStory/ontarioelection2007/. Anidjar, Gil. 2009. Jewish Blood: Metaphor and Reality in Jewish History, Culture, and Religion. Edited by Mitchell Hart. New York and London: Routledge, 2009. Carroll, Noel. 1990. The Philosophy of Horror or Paradoxes of the Heart. New York and London: Routledge. Crane, R. S. 1934. “Suggestions toward a Genealogy of the ‘Man of Feeling.’ ” Journal of English Literary History 1 (3): 205. Deleuze, Gilles. 1991. Masochism. Published together with Venus in Fur, by Leopold von SacherMasoch. New York: Zone Books. Dillon, Bryan. 2010. The Hypochondriacs: Nine Tormented Lives. New York: Faber and Faber. Donne, John. 1952. The Complete Poetry and Selected Prose of John Donne. Edited by Charles M. Coffin. New York: Modern Library. Farmaian, Abou Ali Farman. 2010. “Secular Immortal.” PhD diss., City University of New York. Foucault, Michel. 1972. Folie et déraison: Histoire de la folie à l’âge classique. Paris: Gallimard. ———. 1973. The Order of Things. New York: Vintage Books. Fox, James Alan, and Marianne W. Zwaitz. n.d. Statistics on Homicide Trends in the U.S. Washington: Bureau of Justice Statistics. Goodman, Berney. 1994. When the Body Speaks the Mind: A Psychiatrist Probes the Mysteries of Hypochondria and Munchausen’s Syndrome. New York: Putnam. Gorringe, Timothy. 1996. God’s Just Vengeance: Crime, Violence and the Rhetoric of Salvation. Cambridge: Cambridge University Press.

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Halttunen, Karen. 1995. “Humanitarianism and the Pornography of Pain in Anglo-American Culture.” American Historical Review 100 (2): 303–34. ———. 1998. Murder Most Foul: The Killer in the American Gothic Imagination. Cambridge, MA: Harvard University Press. Harris, Sam. 2004. The End of Faith. New York: Norton. Hauerwas, Stanley, and Romand Coles. 2008. Christianity, Democracy, and the Radical Ordinary. Eugene, OR: Cascade Books. Mack, Phyllis. 2008. Heart Religion in the British Enlightenment. Cambridge: Cambridge University Press. Maine, Henry. (1861) 1950. Ancient Law: Its Connection with the Early History of Society and Its Relation to Modern Ideas. Oxford: Oxford University Press. Monk, Ray. 1991. Ludwig Wittgenstein: The Duty of Genius. London: Penguin Books. Murray, Gabrielle. 2008. “Representations of the Body in Pain and the Cinema Experience in Torture-Porn.” Jump Cut: A Review of Contemporary Media, no. 50 (Spring). http://www .ejumpcut.org/archive/jc50.2008/TortureHostel2/text.html. Nancy, Jean-Luc. 2008. “A Deconstruction of Monotheism.” In Religion beyond a Concept, edited by Hent de Vries, 380–91. New York: Fordham University Press. Ramonet, Ignacio. 2004. “Violences mâles.” Le Monde diplomatique, June. Royle, Edward. 1974. Victorian Infidels: The Origins of the British Secularist Movement, 1791– 1866. Manchester, UK: Manchester University Press. ———. 1980. Radicals, Secularists and Republicans: Popular Freethought in Britain, 1866–1915. Manchester, UK: Manchester University Press. Spacks, Patricia Meyer. 2003. Privacy: Concealing the Eighteenth-Century Self. Chicago: University of Chicago Press. Sullivan, Winnifred Fallers. 2005. The Impossibility of Religious Freedom. Princeton, NJ: Princeton University Press. Targoff, Ramie. 2008. John Donne: Body and Soul. Chicago: University of Chicago Press. Taylor, Charles. 2007. A Secular Age. Cambridge, MA: Harvard University Press. Whitman, James Q. 2005. Harsh Justice: Criminal Punishment and the Widening Divide between America and Europe. New York: Oxford University Press. Wittgenstein, Ludwig. 1953. Philosophical Investigations. Oxford: Blackwell.

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19 NONSELF HELP How Immunology Might Reframe the Enlightenment

A. David Napier Tat tvam asi [That art Thou] —CHANDOGYA UPANISHAD 6.8.7

I. ILLOGICAL “SELF”

In 1960, Peter Medawar and F. Macfarlane Burnet were awarded the Nobel Prize in Physiology or Medicine for their groundbreaking work on immunity and the role of “self” and “nonself” in maintaining and destroying organic integrity. Medawar’s ideas on acquired immunologic tolerance developed from his demonstration that mice “learned” to accept foreign tissue if injected with allogenic bone marrow at or before birth—that is, that one could tolerate difference until defensive intolerance was acquired. Burnet’s contribution was that the body produced the protective antibody (“defender” of “self”—i.e., anti–foreign body) for recognizing a foreign invading antigen (“nonself”— i.e., antibody generator); and that in so doing it failed to recognize “self.” To put it simply, one’s defense mechanism worked by not recognizing the self it protected. By the early 1970s the idea that there was something called an “immune system” was just beginning to take root in general practice, having first appeared in the scientific literature only in the mid-1960s (Moulin 1989, 221–22; 1991), which is why, I would argue, its recent history is so important. This change was subtle but significant; for the science of immunology moved away from an earlier, reactive definition of itself that went far back into the nineteenth century to one now characterized by protection through expulsion; an earlier belief that dramatic, hypersensitive reactions (such as in anaphylactic shock) were “the unavoidable preliminary step in the production of immunity” (Moulin 1989, 232) now gave way to the idea that immunity once acquired stood principally as a mechanism of defense and boundary maintenance.

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Immunology courses at medical schools have, since then, borne such titles as “Identity: Microbes and Defense.” As one leading introductory textbook puts it: While normally acquired immunity is carefully regulated so that it is not induced against components of “self,” for various reasons, when this regulation is defective, an immune response against “self” is mounted. This type of immune response is termed autoimmunity. In many cases, exposure to foreign substances results from clinical situations in which tissue is transplanted or blood is transfused from one person to another. . . . Rejection of the transplant or transfusion is not a manifestation of some force of nature designed to frustrate the physician and the patient. Rather, such rejection occurs because of the central tenet of acquired immunity—recognition and elimination of “not-self.” (Benjamini and Leskowitz 1988, 10)

For several decades, the work of the early pioneers of this model defined the rapidly growing field of immunology while inspiring our present understanding of transplantation biology. In the absence of a fully articulated and well-understood immune system (which, to our surprise when we now look back, first appeared in the literature only in the 1960s), no one could foresee that the human “self” was now defended by a mechanism that could function only by not “knowing,” or otherwise “recognizing,” the very “self” it was designed to look after. Indeed, this may be immunology’s first and ultimate paradox of identity—namely, How can a mechanism defend by not identifying the thing, the person, defended? In successive decades (following Medawar and Burnet), several complex theoretical models emerged: the systemic network theory of Niels Jerne, the associative recognition theory of Melvin Cohn, and the diversified cell theories of David W. Talmage and Burnet—to name some important examples. Through these and others, the systemic nature of immune function became solidified, explaining the idea of immunologic “memory” and the logarithmic rate of antibody formation by showing how molecules could quickly replicate on binding to an injected antigen. Through evidencing such an orchestrated defense against what was viewed as a “pathogenic assault,” the concept of the immune “system” became an acknowledged fact, even though yet today its very existence remains based, to quote Cohn, the Salk Institute’s dean of theoretical immunology and head of its Conceptual Immunology Group, “on experimental systems of such great complexity that many interpretations are possible and reproducibility becomes a luxury” (Cohn et al. 1980; see also Cohn 1992, 1997a, 1997b, 1998a, 1998b, 1998c). Almost overnight the “killing” and “consuming” concepts of pathogenic microbial invasion took root in immunology even though at the time the nature of viruses (which I will get to in a moment) was yet very poorly understood. Indeed, despite early optimism about the explanatory usefulness of an immune system structured to defend against invaders, the fundamental paradigm of immunology— the recognition and elimination of “nonself ”—has yet to resolve the field’s major

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concerns of autoimmunity, transplantation, and tumor immunology (Carosella and Pradeu 2006, 2010; Carosella et al. 2006; Pradeu 2009; Pradeu and Carosella 2006). Indeed, “the self–nonself” model has created so many intractable problems (e.g., Tauber 1991, 1994, 1999, 2000, 2003; Tauber and Chernyak 1991) that theorists and bench researchers alike frequently suggest that it ought to be put to rest (Tauber 1994), or replaced by a model in which antigen-presenting cells (macrophages and dendritic cells) allow the body to become “aware” of viral “danger.” This was, and yet remains, the contested view of Polly Matzinger (e.g., Matzinger and Fuchs 1996; Schaffner 1997), one of the most popularly acknowledged (e.g., Pennisi 1996) and most controversial of U.S. immunologists. There is still a fascinating book to be written specifically about how these models were rapidly transformed between the 1960s and the new millennium (see, e.g., Eichmann 2008)—both about how notions of what viruses were evolved out of the study of microbes, and about how immune-systems models related in the 1950s and 1960s to the Macy Foundation’s studies of social information feedback, carried out by the “father of cybernetics,” Norbert Weiner, along with Harvard sociologist Talcott Parsons and anthropologist Gregory Bateson. However, what is so often overlooked throughout these debates over models of immunity is the degree to which immunological identity hinges on culture-bound notions of a wholly autonomous “self”—a concept made manifest in two basic assumptions: (1) that organic integrity depends on the recognition and elimination of biological difference (there would be no immunology without recognition and elimination); and (2) that the notion of a prior and persistent “self” is not contestable. Overall, these premises converge on a singular assumption: that a “self” must preserve its integrity through a protective mechanism. Were a “self” not salient, persistent, and protectionist, that “self” would soon become, as Cohn himself once reminded me, a toxic dump site. While the “recognition-and-elimination” model worked well for autonomous biological pathogens (such as those bacteria and parasites that really do attack us), we now know that defending the body against a viral “attack” is nothing like defending it from invading organisms. Viruses need cells to achieve vitality, and cannot attack without the life that autogenous, “self-made” cells (ones made by our own bodies) bring to each and every viral encounter. Furthermore, because immunity demands the ongoing and ever-changing acquisition of tolerance to one’s own proteins, it is often argued by contemporary immunologists who are dissatisfied with the self–nonself model that if, as we now know, the self “is constantly being defined anew” through defensive antibody production and related acquired immunity, isn’t that another way of saying “that it doesn’t really exist at all” (Richardson 1996, 86)? In other words, if the self is a prior and persistent Cartesian entity, then what we now know about immunity makes its focus on self both misconstrued and inappropriate. Either immunology is not about the self, or, if it is about selfhood, then that self is not Cartesian.

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II. A BASIC CONUNDRUM

If so much in immunology depends on what a “self” is, can what we have learned from immunology, to reverse our terms, make possible a rethinking of our time-honored concept of selfhood? Does immunology, to reverse our inquiry, tell us something new regarding our cultural and historical assumptions about identity and what it is that makes for a “self”? Although good bench science depends on building on existing assumptions, anthropologists can look toward other cultures for models of self and other; for there are many examples (Hinduism being one famous one) in which body-image boundary is defined by a careful familiarity with, and a regulation of, new stimuli that may in turn be helpful or harming. Without providing the extensive inventory of possible models that a full historical and anthropological assessment of these questions would require—a thing, by the way, very much in need of being done—we may and should ask what might be gained by such an inquiry. Are other notions of “self ” applicable in any way to theoretical immunology? To answer this we need briefly to revisit the famous question of whether viruses are living things; for we will see that the virus stands somewhere at the borders of “self” and “nonself,” and is thus as much a conditioner and definer of a body’s boundaries as it is a “single-minded attacker.” A comparison of an excellent contemporary introduction to cellular biology (Becker, Reece, and Poenie 1996) and any of the early popular attempts at explaining whether viruses are living things reveals that our assumptions about the vitality of the virus have changed little over the past forty years; for despite the fact that viruses have no mobility, we continue to describe them as if they do. Indeed, today’s texts put the question aside as intractable: The question is sometimes asked whether or not viruses are living. The answer depends crucially on what we mean by “living,” and it is probably worth pondering only to the extent that it helps us more fully understand what viruses are—and what they are not. The most fundamental properties of living things are mobility, irritability (perception of, and response to, environmental stimuli), and the ability to reproduce. Viruses clearly do not satisfy the first two criteria. Outside their host cells, viruses are inert and inactive. They can, in fact, be isolated and crystallized almost like a chemical compound. It is only in an appropriate host cell that a virus becomes functional, undergoing a cycle of synthesis and assembly that gives rise to more viruses. (Becker, Reece, and Poenie 1996, 105)

And because it is intractable, we continue to use volitional, intentional metaphors that encourage us to think of the virus as a living thing that can commandeer a healthy cell, reduce it to a nursery, and reproduce itself at breakneck speed. But how can a virus do such things if it is inert and without locomotion? How can viruses recognize, scout, trick, discover,

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alert, evade, sense, recruit, mobilize, prod, mask, defend, scavenge, attack, invade, adapt, appropriate, sacrifice, and kill (Napier 2003a, 60) if they lack mobility and do not respond to environmental stimuli? If these are mere linguistic conventions, why should we continue to employ them when they are so inaccurate? Here is a common example of the consequences of such conceptualizing made famous by Susan Sontag in AIDS and Its Metaphors (1990).1 It will resonate easily with what most of us have been told: The invader is tiny, about one sixteen-thousandth the size of the head of a pin. . . . Scouts of the body’s immune system, large cells called macrophages, sense the presence of the diminutive foreigner and promptly alert the immune system. It begins to mobilize an array of cells that, among other things, produce antibodies to deal with the threat. Single-mindedly, the AIDS virus ignores many of the blood cells in its path, evades the rapidly advancing defenders and homes in on the master coordinator of the immune system, a helper T cell. . . . On the surface of that cell, it finds a receptor into which one of its envelope proteins fits perfectly, like a key in a lock. Docking with the cell, the virus penetrates the cell membrane and is stripped of its protective shell in the process. . . . The naked AIDS virus converts its RNA into DNA, the master molecule of life. The molecule then penetrates the cell nucleus, inserting itself into a chromosome[,] and takes over part of the cellular machinery, directing it to produce more AIDS viruses. Eventually, overcome by its alien product, the cell swells and dies, releasing a flood of new viruses to attack other cells. (105–7)

Here is another example: When faced with a foreign invader, the immune system mounts either of two defenses. One, humoral immunity, involves primarily B cells. These white cells recognize a particular antigen, then make antibodies that bind to that molecule. The other depends heavily on T cells . . . that can destroy tumors and cells infected with viruses and bacteria. These assassins, including natural killer cells, become part of the cell-mediated immune response. T helper cells are the sergeants that roust T or B cells into action. As helpers form in the thymus, each becomes sensitive to just one antigen trigger. They drift in the bloodstream or hang out in lymph nodes in a “naïve” state until they meet the antigen they were primed to recognize. At that moment, a helper cell’s fate is sealed as either a TH1 or a TH2, or so some researchers think. If it becomes a TH1, the cell then readies cytolytic T cells to do battle, generating the TH1 response. As a TH2 cell, it initiates humoral immunity. . . . These beneficial assassins can destroy a cell that has been tricked into harboring pathogens where antibodies and TH2 components can’t get at them. (Pennisi 1994, 121; emphasis added)

But if, on its own, a virus remains inert and without locomotion, why should we privilege it with agency? Why should we in fact refer to viruses as foreign agents, if a virus

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is lifeless outside a living cell? And if the floating virus is not an active “other” to be defeated, what generates a so-called viral attack? Why, furthermore, should the body’s bringing it to life be understood as primarily a defensive activity, if a virus on its own is inanimate? Finally, if the so-called defensive antibodies we create (and those proteins essential for identify foreign bacteria and viruses) are de facto not coded for marking “self,” how can we see them at all as “self”—or a defensive mechanism of “self”? Might it be that our persistent characterization of viruses as active agents arises partly from the cultural belief that harboring otherness within us is principally dangerous—a belief whereby a persistent “self” must in turn always be protected against things “foreign”? Although we all have cancer cells within our bodies, for example, we never say we have cancer until those cells become problematic. In fact, this ambivalence about and concern over things foreign within us is why, until the arrival of stem-cell research, studying the maternal–fetal was so often unsatisfying for immunologists (Charlesworth et al. 1989). To put things in perspective in an era of research now dominated by attention to “uncommitted” embryonic stem cells, it is worth listening to a well-known Australian immunologist’s view of the maternal–fetal only a few decades ago. In 1975–76, the Nuffield Foundation had supported the distinguished Australian immunologist Graham Mitchell in what was hoped to be new, groundbreaking work in this area. But this kind of immunology was unsatisfying for most immunologists, whose training emerged from the understanding of the invasive agents of bacteriology and parasitology. As Mitchell put it, commenting on this period of his research in the 1970s: The maternal/foetal was a good idea, but we just didn’t have the techniques, just didn’t have the way of approaching the question. It’s something which a lot of people have actually got into for a short time and then got out of—the immunological aspects of nature’s most successful foreign graft [i.e., pregnancy]—how the foetus actually survives inside the immunologically hostile mother. We know she is responding to antigens from the foetus. So we did a little bit on that and then got a couple of publications. But that was a bad year. We had the idea and we thought, wouldn’t it be nice to have got some money for it, and then we were under pressure to deliver on the money we got from the Nuffield Foundation. . . . We weren’t into the field enough and I must say we really didn’t get into the field because I got absolutely seduced by host/parasite relationships. (Charlesworth et al. 1989, 214)

As a group of social scientists then studying Mitchell’s work pointed out, it is clear that Mitchell’s own background, experience and contacts fitted him better for research into the immunology of host/parasite relationships. He had no special background in reproductive physiology [most immunologists didn’t prior to the era of stem-cell research] and was unfamiliar with key techniques needed in the foetal/maternal studies—as he [Mitchell] put it, “we were not particularly good at tissue culture.” But he was au fait with the basics of parasitology: “I didn’t [Mitchell claimed] have the hangup, which a lot of students do have,

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of learning the list of fifty parasites and remembering the life cycles and remembering what host they parasitize and so on. . . . That was behind me as an undergraduate. A little bit of boning up and that’s all I needed for that.” (Charlesworth et al. 1989, 214–15)

But Mitchell was far from alone at that time in being unsettled by the areas of embryonic-cell research that now dominate the science-news media; embryology had since World War II faded in importance as microbiology grew dramatically, leaving immunology and virology to evolve alongside and out of the studies of invasive agents and infectious diseases. Why do autoimmune symptoms often subside in pregnancy? Why do women have much higher rates of autoimmune infection (as much as seven or eight times) than men? Might even childbirth itself, as immunologists often think, be understood in terms of immunological rejection? These are today’s questions more than yesterday’s. But given them (perhaps precisely because of them), we should, I would argue, persist in revisiting our earlier question: How can viral antigens be considered foreign invaders if our own cells animate viruses? In Darwinian evolution there is no reason for a healthy organism to seek out something that might harm itself, except when in retrospect we call that encounter conditioning. And, because organisms do not spontaneously endanger themselves in a “naturally selective” world, viruses must at some level, it is assumed, be aggressive killers, even if they are actually inert until brought to life by a cell. There is, however, another possible view—namely, that antibodies are a key to exploring the dividing line between self and other, a mechanism by which one’s identity, as a living thing, becomes contested and eventually defined. Identity, in this sense, remains—to the considerable relief of immunologists—a prior and persistent condition, but one that is now defined at the peripheries of selfhood, where it is contested and challenged. If we can accept such a view of identity (one widely evidenced in the anthropological literature), there is only one logically consistent and satisfying conclusion to be drawn: namely, if viruses need cells to come alive, the so-called immune self (our antibodies) must attract, or otherwise absorb, those potentially pathological viral antigens. We know, that is, who we are by the risky, dynamic, and sometimes painful process of discovering what we can and cannot accommodate. “If you can’t stand the heat,” as Richard Nixon was so fond of repeating ad nauseam, “get out of the kitchen”—survival, in this view, being predicated on stepping forward, “taking the heat,” and hopefully doing something with it besides caving in. Although a completely different paradigm, the notion that antibodies absorb potentially harmful bits of inert matter to transform (for better or worse) their packaging of information actually makes good sense and withstands all logical trials we might set against immunology’s major conundrums; for an antibody is the tool that enables a living thing to explore the boundaries of life—to engage that danger that is the precondition of real change, whether that change be life giving or life taking. Although many may find the concept of inviting danger intolerable, in some non-Western notions of selfhood it is considered both logical and coherent. There are multiple anthropological examples of how self is made up and defined by potentially dangerous encounters at one’s boundaries.2

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I I I . N O N S E L F H E L P : C O M PAT I B I L I T Y R E C O N S I D E R E D

I have suggested how an alternative view of viral activation—one arising from within cotemporary immunology—can reframe immunology’s former “paradox of identity”; but what of its other, more vexing paradoxes? Can this assimilative view of viral life also reframe them? Let us briefly apply such an interpretation to two other outstanding and famous paradoxes of theoretical immunology. First, the Evolutionary Paradox (Silverstein 1989): How can the human body continue to create a broad-specificity repertoire—a wide range of “B” (bone marrow) and “T” (thymus) white blood cells—when natural selection would otherwise demand that apparently superfluous “deformations” be eliminated? The answer is that, in an anthropologically and historically informed model, natural selection is no longer a problem because the body is creating possible versions of “otherness” rather than mutations of “self”—that is, the bone marrow (“B”) and thymus (“T”) cells explore “otherness” rather than defend “self”; for the human body appears to produce an extraordinary number of antigen-inducing antibodies. Indeed, estimates of the human antibody repertoire run from 105 to 1016. And if these figures weren’t already mind-boggling, “because most antigens have many epitopes [i.e., amino acids or sugar residues that are antigenic—“outside”—determinants] and a given epitope can be recognized by more than one lymphocyte [response cells in the lymph nodes], the number of lymphocytes that can respond to a given antigen is much larger than the number of cells possessing a certain antigen receptor” (Becker, Reece, and Poenie 1996, 788). According to natural selection, these numbers should be naturally limited. Superfluous creations should be eliminated. Bodies don’t, for instance, spontaneously generate organic variations in anticipation of unanticipated events. In evolution the body responds and adjusts to stimuli; it does not create spontaneous mutants, or at least does not do so as a function of health-enhancing activity. Saltation—sudden and unexpected change— troubled Darwin; it was thought unnatural. Since, however, cellular diversity by definition proliferates in immunology, this socalled immunological repertoire appears “paradoxical” to immunologists when it creates mutants that have no apparent target. A body should not produce spontaneous, experimental deformities in anticipation of a single cellular mutation out of millions upon millions that might be useful for some future, unknown threat. Furthermore, for binding to take place, an antibody must be created with a locking mechanism that works for an unknown antigen. This makes no sense either, because variation, by definition, is infinite—unless immunologists, as have some evolutionary biologists, come to accept the possibility that antigens develop from the nucleic acids of normal cell genes (i.e., out of the attenuated nucleic acids of [as it were] “former selves,” or at least something very much like them). If this connection between pathology and prior normality is posited, what of antibodies—those mutations we generate in anticipation? Might they not be seen, then,

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as creative attempts to engage risk at the borders of self? In numerous non-Western models identity depends on just such a dynamic engagement. However, I refrain from making the complex digressions that such an explication would necessitate, but refer to the many examples of spiritual engagement, ritual warfare, and marital customs described in the anthropological literature wherein the assimilation—the vaccination—of “otherness” proliferates. Although elsewhere I discuss alternate concepts of self at some length (e.g., Napier 1986; 1992, 190–99; 2003a), suffice it here to say that the anthropological literature is replete with examples not only of how body-image boundaries may become transformed or otherwise malleable but also of where they position themselves to assimilate other selves, or, as it were, evolutionary “former selves,” as a means of establishing and negotiating identity. If natural selection is the parent of traditional immunological identity, cell biology shows that there is nothing natural about selection, at least as it relates to the benefits and drawbacks of encountering danger; for a self understood as a “prior and persistent identity” can never ascertain in advance whether a selective pressure is ultimately destructive or constructive. (Which is why, incidentally, natural selection is so frequently accused of being teleological.) Therefore such a “self” can only constantly attempt—as it were, “selfishly”— to eliminate difference. The result of this elimination may reflect the immunology we have inherited, but it will not answer the contradictions of the field now being taken on by contemporary immunology—contradictions whose resolutions shake the very foundations of Cartesian thinking about what makes a “self” prior, persistent, and autonomous. So much for the evolutionary paradox and immunology. But there is another, equally famous outstanding paradox that an assimilative view of viral encounters resolves. This is what is known as the Repertoire Paradox (Silverstein 1989). And it goes like this: How can we argue that the proliferation of B cells and T cells is adaptive when neither the size of the immunological repertoire, nor even the presence or absence of the thymus (our major generator of immunity), can be construed as an indicator of resistance? Some organisms do very well indeed with a quite limited repertoire; and it is widely accepted that repertoire scope is relevant only to the number of potentially pathogenic viruses that can influence an organism: one may not need a thymus at all if there is no danger, no alienated variation of identity—no “similar,” “other,” or “former” self, as it were—being expressed. Furthermore, “foreign” viruses and prokaryotes (those organisms whose DNA is not contained inside a cellular nucleus) are not always harmful: some are innocuous; others are real mutation–transformation factories without a clearly defined “target,” undermining the very notion that the body seeks always to rid itself of difference. But identifying “nonself ” need not be defensive in this new, immunologically and anthropologically informed model of “self”; for immunity can now be understood more as a creative attempt to engage difference than solely as a battle to eliminate it. Here, immunity is less a system of protection and defense than a system of information assessment, even of creation, for we survive through risking engagement with difference—as so many new students of mirror neurons, for instance, are eager to tell us.

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Today, then, immunology sees itself quite differently, and, I would argue, is well positioned—perhaps better positioned than any other domain of modern science—to help us rethink notions of the self that have dominated Western philosophy at least since the Enlightenment; for it is with the Enlightenment that we get the birth of scientific agnosticism and the first consistent argument for a prior and persistent person that is not predicated on divine intervention.3 Compare the “recognition and elimination” model of immunity with, for instance, a recent Salk Institute discovery that certain skin cells with a hereditary blood disease called Fanconi anaemia could be reengineered to revert to stem cells, which could then be recommitted by use of a virus. What this means is that the repaired cells—constructed by reverse engineering to a naive stem cell and then, as it were, reinfecting it—can now be used to replace the defective bone-marrow cells characteristic of a disease that also results in very low blood-cell counts. A cure becomes possible because, rather than suppressing immune responses, we reshape them by encouraging and feeding novel viral information—information of a new type that one day may well lead to therapies for what were once incurable genetic disorders. What made this possible, I would argue, is an unrecognized but giant leap that has almost subconsciously become a core immunological precept—namely, that viruses do not invade us. We, for better or worse, bring life to the sometimes dangerous encounters that define the limits of who we are, that limit what we can be, and that (hopefully) do so without taking the very life that those viruses, once embodied, now inform—or, as we used to say, infect. Burnet’s antibodies, which recognize “foreignness” (“nonself”) but fail to recognize “self,” are now replaced by antibodies that function as “self” search engines—search engines for the information (harmful or helpful) that sits latently in viruses like books in a library. If, as evolutionary biologists now widely suppose, pathogens evolve from normal cell genes or entities much like genes (for how else can they bind with cell surface receptors?), what our antibodies must be recognizing are as much aspects of selfhood as aspects of foreignness. The difference made possible by this view is neither subtle nor semantic; for it shows us that cellular antibodies risk bringing life to alien viruses to revitalize these biologically binding—and therefore related, even if dangerous—forms of “self ” so as to adjust and respond to them. In this view the “self” stands not only as something prior and persistent but also as a living thing capable of constantly re-creating and reclaiming its identity through engaging viral information. “Know your friends well, your enemies better.” Thus understood, the body interacts with its environment in an attempt to create a new future. Burnet, who said “it could be no other way” than for antibodies to fail in recognizing “self,” did not suspect that there was another way of resolving immunology’s paradoxes—a way that might change how we view the self and its environment. Part of this not knowing was because of immunology’s evolving out of cell biology—where real organisms do attack one another. Part of this was because we needed molecular genetics and stem-cell research to demonstrate the real advantages of modifying and loading cells over killing them off.

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The alternative view outlined here, although not the last word on the immunological self, does provide an explanation by which immunology’s paradoxes can be reconciled with what is known. If proven correct, it may or may not help reshape scientific research—as it, however, seems now at the threshold of so doing; but it will certainly force us to reconsider immunology’s contribution to the metaphysics of human identity.

N OT E S

1. For further discussion, see Napier 2003a. See also Cohen 2004, 2009; Martin 1990, 1994; Moulin 1989, 1990; and Napier 1996a, 1996b. 2. See several examples in Napier 2003a and 2003b. On the idea that identity is defined at its peripheries, see Fredrik Barth’s landmark Ethnic Groups and Boundaries: The Social Organization of Cultural Difference (1969). 3. More specifically, I say “Enlightenment” because Descartes begins his own Meditations with the claim that he is about to embark on his famous exploration of (self-) consciousness, and that (like a modern-day “infectious” virus) he comes forth masked.

REFERENCES

Barth, Fredrik.1969. Ethnic Groups and Boundaries: The Social Organization of Cultural Difference. Oslo: Universitetsforlaget. Becker, Wayne M., Jane B. Reece, and Martin F. Poenie. 1996. The World of the Cell. 3rd ed. Menlo Park, CA: Benjamin-Cummings. Benjamini, Eli, and Sydney Leskowitz. 1988. Immunology: A Short Course. New York: WileyLiss. Carosella, Edgardo D., and Thomas Pradeu. 2006. Transplantation and Identity: A Dangerous Split. Lancet 368(9531):183–84. ———. 2010. L’identité, la part de l’autre: Immunologie et philosophie. Paris: Odile Jacob. Carosella, Edgardo D., Thomas Pradeu, B. Saint-Sernin, and C. Debru. 2006. L’identité? Soi et non-soi, individu et personne. Paris: Presses Universitaires de France. Charlesworth, Max, Lyndsay Farrall, Terry Stokes, and David Turnbull. 1989. Life among the Scientists: An Anthropological Study of an Australian Scientific Community. Melbourne: Oxford University Press. Cohen, E. 2004. My Self as an Other: On Autoimmunity and “Other” Paradoxes. Medical Humanities 30:7–11. ———. 2009. A Body Worth Defending: Immunity, Biopolitics, and the Apotheosis of the Modern Body. Durham, NC: Duke University Press. Cohn, Melvin. 1992. The Self/Nonself Discrimination: Reconstructing a Cabbage from Sauerkraut. Research in Immunology 143 (3): 323–34. ———. 1997a. A New Concept of Specificity Emerges from a Consideration of the Self/Nonself Discrimination. Cellular Immunology 18:103–8. ———. 1997b. Some Thoughts on the Response to Antigens That Are Effector T-Helper Independent (“Thymus Independence”). Scandinavian Journal of Immunology 46:565–71.

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———. 1998a. At the Feet of the Master: The Search for Universalities; Divining the Evolutionary Selection Pressures That Resulted in an Immune System. Cytogenetics and Cell Genetics 80:54–60. ———. 1998b. A Reply to Tauber. Theoretical Medicine and Bioethics 19:495–504. ———. 1998c. The Self/Nonself Discrimination in the Context of Function. Theoretical Medicine and Bioethics 19:475–84. Cohn, Melvin, R. Langman, and W. Geckeler. 1980. Diversity. Progress in Immunology 4:153–201. Eichmann, Klaus. 2008. The Network Collective: Rise and Fall of a Scientific Paradigm. Basel: Birkhäuser Verlag. Martin, Emily. 1990. Towards an Anthropology of Immunology: The Body as Nation State. Medical Anthropology Quarterly 4 (4): 410–26. ———. 1994. Flexible Bodies: Tracking Immunity in American Culture from the Days of Polio to the Age of AIDS. Boston: Beacon. Matzinger, Polly, and E. J. Fuch. 1996. Beyond “Self” and “Nonself”: Immunity Is a Conversation Not a War. Journal of NIH Research 8:35. Moulin, Anne-Marie. 1989. The Immune System: A Key Concept for the History of Immunology. History and Philosophy of the Life Sciences 11:221–36. ———. 1990. La Métaphore du soi et le tabou de l’auto-immunité. In Soi et non-soi: Des biologistes, médecins, philosophes, et théologiens s’interrogent, edited by J. Bernard et al., 55–68. Paris: Seuil. ———. 1991. Le dernier langage de la médecine: Histoire de l’immunologie de Pasteur au Sida. Paris: Presses Universitaires de France. Napier, A. David.1986. Masks, Transformation, and Paradox. Berkeley: University of California Press. ———. 1992. Foreign Bodies: Performance, Art, and Symbolic Anthropology. Berkeley: University of California Press. ———. 1996a. Penser “vaccinologiquement”: Une sélection qui n’est pas vraiment naturelle. In L’Aventure de la vaccination, edited by Anne Marie Moulin, 409–22. Paris: Fayard. ———. 1996b. Unnatural Selection: Social Models of the Microbial World. In Proceedings, International Meeting on the History of Vaccinology, Marnes-la-Coquette, France, edited by S. Plotkin and B. Fantini, 335–40. New York: Elsevier. ———. 2003a. The Age of Immunology: Conceiving a Future in an Alienating World. Chicago: University of Chicago Press. ———. 2003b. Stressful Encounters of an Immunological Kind: The Social Dimensions of Psychoneuroimmunology. In Social and Cultural Lives of Immune Systems, edited by James Wilce, 269–81. New York: Routledge. Pennisi, Elizabeth.1994. Number 12 Steps Up to Bat: Will This Immune System Messenger Hit a Grand Slam? Science News 146 (8):120–21, 124. ———. 1996. Teetering on the Brink of Danger. Science 27 (5256):1665–67. Pradeu, Thomas. 2009. Les Limites du soi: Immunologie et identité biologique. Montreal: Presses Universitaires de Montréal. Pradeu, Thomas, and Edgardo D. Carosella. 2006. The Self Model and the Conception of Biological Identity in Immunology. Biology and Philosophy 21 (2): 235–52. Richardson, Sarah.1996. The End of the Self. Discover 17 (4): 80–87.

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Schaffner, Kenneth F., moderator. 1997. Sense of Self: Models of Immunologic Tolerance; Synopsis of the Debate on Self–Nonself, Danger, Integrity, and Beyond. HMS Beagle 11, June 27:1–5. Silverstein, Arthur M. 1989. A History of Immunology. San Diego: Academic Press. Sontag, Susan. 1990. Illness as Metaphor, and AIDS and Its Metaphors. New York: Doubleday. Tauber, Alfred I. 1991. Organism and the Origins of the Self. Dordrecht, Netherlands: Kluwer Academic. ———. 1994. The Immune Self: Theory or Metaphor? Cambridge: Cambridge University Press. ———. 1999. The Elusive Immune Self: A Case of Category Error. Perspectives in Biological Medicine 42:458–74. ———. 2000. Moving beyond the Immune Self? Seminars in Immunology 12:241–48. ———. 2003. Review of The Age of Immunology: Conceiving a Future in an Alienating World, by A. David Napier. Journal of the American Medical Association 289:3309–11. Tauber, Alfred I., and Leon Chernyak. 1991. Metchnikoff and the Origins of Immunology: From Metaphor to Theory. New York: Oxford University Press.

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20 SECULAR HISTORIES, SAINTLY RETURNS Death and Devotion in Modern Turkey

Christopher Dole

In 2005, while visiting a saint whose ability to perform miracles—especially for the sick and dying—had attracted a modest following in Turkey, as well as having earned her the title of evliya, or “saint,” I was invited by a group of her followers on an excursion to a nearby tomb. Our trip was meant to celebrate the circumcision of their sons, and the destination was specifically recommended by the saint, Zöhre Ana. As we traveled through the streets of Ankara—through outer squatter neighborhoods, new yet rapidly decaying industrial districts, blocks of upscale apartments—I learned that this would be not a typical tomb visitation but a trip to Anıt-Kabir, the final resting place of the great revolutionary leader of the republic, Mustafa Kemal Atatürk. The irony of this pilgrimage was inescapable. Atatürk, Turkey’s arch-secularist and modernist founder, ardently opposed the forms of popular Islamic practice represented by Zöhre Ana, and once remarked venomously that it was “a disgrace for a civilized society to appeal for help from the dead” (Mango 1999, 435; cited in Soileau 2006). Yet for my fellow travelers, Zöhre Ana was the inheritor of Atatürk’s spirit (ruh) and a person through whom Atatürk, as a deceased evliya, was able to speak again to the living. Upon arriving at Anıt-Kabir, we joined the lines of tourists trailing into the mausoleum. As we passed in front of the tomb’s marker, the group suddenly took formation, with circumcised children in front and others lined up behind, their palms turned upward in prayer. Security guards appeared immediately. Descending from the rear, they ordered the group to move forward. The saint’s followers asserted their freedom to worship as they pleased. The guards, enraged, insisted that this was no place for “worship.”

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The argument continued to escalate as guards began to push men in the group. Tourists gawked and took photos. Eventually, the group relented, returning to their cars and traveling back across the city to the saint’s compound to continue celebrating their boys’ circumcisions. In time, I would come to understand this confrontation between the followers of a saint who gives voice to the nation’s dead founder and government officials laboring to regulate how the state and its past are venerated as a public staging of what I had been hearing with unexpected urgency in the stories of suffering and loss I encountered over the course of my research. That is, to recount one’s experiences of healing and being healed was not only to reflect on one’s experiences of personal and familial loss. It was also, and simultaneously, to engage in a series of interlocking struggles over the status of death, loss, and devotion in relation to state power. And it would be in accounts of those seeking the assistance of healers and forms of care outside the country’s network of state-authorized health clinics and hospitals—among a diverse collection of Qur’anic healers, living saints, and religious figures offering miraculous cures—that I would find these political-therapeutic entanglements growing especially dense. In this chapter I want to examine the efforts of a living saint, Zöhre Ana, to find a voice and a home within Turkey’s project of secular modern development. Here I am particularly interested in considering how Zöhre Ana’s saintly engagement with secularism embodies what Achille Mbembe has described as a certain “conviviality” of power. For Mbembe, relations of power defined in convivial terms are not to be reduced to a dynamic of opposition or resistance, but should be recognized instead as processes of mutual borrowing—where “officialdom” and “popular vulgarity” rely on one another’s repertoire of idioms and forms in a common desire for “majesty” and “grandeur” (Mbembe 2001, 110). Relationships of subjection, as Mbembe argues, are thus marked not simply by disjunction and opposition but by familiarity and domesticity, in that state power and the “popular world” share a common living space (2001, 110). With this formulation in mind, I want to examine how the conviviality of secular state power and saintly revelation in Turkey unfolds as a distinct problem of relating death to life, one that will reveal both the infidelities of secularism as a social reality and the forms of violence that were its conditions of possibility.

S E C U L A R R E F O R M A N D T H E P R O B L E M O F D E AT H

It is not incidental that the visit of Zöhre Ana’s followers to Atatürk’s tomb caused such an uproar and, beyond the tomb, that Zöhre Ana’s saintliness reliably stages larger social commentaries about the status and future of Turkey’s secular modernity. Although figures such as Zöhre Ana, and religious healers more generally, would seem marginal if not irrelevant to prominent struggles between “Islamists” and “secularists” over political power—struggles that have become imagined as the primary if not exclusive site for working out new models of secular democratic rule in the Muslim world—the history of

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secular reform in Turkey turns in no small measure on the figure of the religious healer, and the sorts of authority he or she embodies. In order to understand the distinctive ways that secularism and death configure in Zöhre Ana’s saintly discourse, we need to appreciate first the historical specificity of Turkey’s project of secular modernity. In Turkey, the concept of secularism, or laiklik, occupies a fundamental position in the nation’s vision of its own past, the limits of the present, and the possibilities of political futures.1 Under the influential leadership of Mustafa Kemal Atatürk, political reformers of the 1920s and 1930s conceived secularism as a project of political and societal regeneration. It was not only to function as the cornerstone of national sovereignty and offer an integrative framework for binding an ethnically, linguistically, and religiously fragmented society; it was also to serve as the basis of individual and collective liberation, an encompassing project of world and subject making that would leave no aspect of social life untouched. Unlike elsewhere, the secularization reforms of this period did not aim simply to separate religious and political institutional structures. As a new nation emerged from the remnants of an Ottoman state organized around interdependent political and religious institutions, secular reformers sought to remove religious institutional influence from state structures, regulate public forms of religious expression, subordinate Islam’s role as a binding force of the polity to Turkish nationalism, and restrict religion to a matter of personal or private concern. An overarching aim of these reforms was to consolidate a version of Islam that would be both amenable to state regulation and appealing to an emerging nation of scientific-minded citizens. Consequently, the conception of Islamic orthodoxy that emerged in this period was itself constituted to a significant extent by the reforms undertaken in the name of secularism (see Asad 1993, 2003). Rather than incorporating saints, shrines, and religious orders into state-sponsored forms of Islamic religiosity, a central aim of the state’s efforts to sort acceptable from unacceptable forms of religiosity was the elimination of the institutional infrastructure of religious orders. By 1925, the country’s network of religious orders and lodges, many organized around the tombs of holy persons, would be legally prohibited and forcibly closed. In addition to eliminating religious institutional structures deemed threatening to the state, secular reformers also sought to submit the remaining religious institutions to government regulation. It would be during this period, for instance, that the state would assume control of the education of religious professionals, and positions such as imam and mufti would become government appointed. Alongside these efforts to regulate religious institutions and subvert bases of political opposition found among the country’s network of religious orders, the forms of religiosity associated with the veneration of saints would also emerge at this time as prominent targets in the state’s effort to eradicate the sorts of “superstition” deemed contrary to the national and technological promises of a rationally organized society. In the state’s struggle against “superstition,” the therapeutic claims of the saint and other forms of religious healing would become entangled in an emergent politics of truth,

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wherein both the health of individual bodies and a nation’s collective health emerged as corresponding problems of political power. In such a biopolitical rationale of governance (see Foucault 1978, 2003), a distinct relationship between life, death, and political reform would be promoted, one that placed special emphasis on the collective well-being of the population as both an index and means of secular modern development. This emerging political relationship to death and life would assert its most explicit formulation in the campaigns of scientific literacy and medical reform that swept the nation during its early years (Dole 2004, 2012). Death, as measured in rates of morbidity and mortality in the population, would here become opposed to life in a novel way—as the limit against which the state would struggle and a newly liberated population’s modernity would be measured. Within this encompassing project of secular modern world making, the saint, and others offering “miraculous” cures, were not only obstructing the rational enlightenment of the national public. They also embodied a relationship with death at odds with the biopolitics of secular reform. With this in mind, the “disgrace” that Atatürk invoked in disparaging those who “appeal for help from the dead,” as well as the anger of the security guards at Atatürk’s tomb, can thus be understood as expressing not merely a civilizational discourse of ignorance and enlightenment, but also a distinctively biopolitical sensibility. I have discussed elsewhere the ways that religious healing and secularism in Turkey represent overlapping projects of world and subject making (Dole 2012). In what follows, I am interested in exploring the ways that the relationship with death presumed by Turkey’s project of secular modern development enters into and takes part in contemporary manifestations of saintliness in Turkey. How does Zöhre Ana’s authority as a saint, which is both premised on and allows for a particular relationship with death, articulate with secular regimes of truth and history? How does a healer, through whom deceased saints are able to speak again to the living, relate to a political order whose origins are to be found not only in the rejection of such capacities but in the very “disqualification of death” from its political life (Foucault 2003)? As these questions indicate, my interests in this essay are not primarily with the therapeutic aspects of Zöhre Ana’s practices. Rather, I am principally concerned with the broader relationship between Zöhre Ana’s saintly authority and secular political rule as a means for considering the inconsistencies, affordances, and infidelities of secularism as a generative social reality.

S A I N T LY S P E E C H A N D S E C U L A R W O N D E R

I want to begin to address these questions regarding death, secularism, and saintliness by attending first to the distinctive form of speech for which Zöhre Ana is renowned— namely, her nefesler. As both basis and evidence of her miraculous ability to intercede with deceased evliyas, Zöhre Ana’s nefesler (pl. of nefes) are forms of divinely inspired poetic speech that emerge from her entrance into the umman (literally, “ocean”), a state in which she is overcome by the presence of visiting saints and through which they are able to speak again to the living.2 Zöhre Ana’s nefesler give voice to a long genealogy of saintly

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authority as they position her squarely within an established tradition of saintly devotion in the region.3 Whereas her nefesler index a familiar performative genre (of Zöhre Ana subsumed in the umman, taken over by deceased evliyas, their words emanating from her twisting body) and invoke well-known religious figures and settings, they are also important settings for innovation. In this play between convention and innovation, I am interested in the ways that Zöhre Ana’s nefesler take form as a capacity of speaking made possible by a distinctive relationship with death, one that is both indebted to and yet betrays the legacy of Turkey’s project of secular modern development. These dynamics are exemplified in the particular ways that the figure of Mustafa Kemal Atatürk enters into and moves through Zöhre Ana’s saintly language. In standard accounts of her life, a defining moment in Zöhre Ana’s career as a saint comes when Atatürk first reveals himself to her followers through her nefesler, a moment at which Atatürk announces himself as an evliya whose miraculous powers had played a decisive role in ushering in a new nation. While the open veneration of Atatürk as a saint is undoubtedly rare in Turkey, he would, in time, become a central figure in Zöhre Ana’s saintly universe, with his image and words recurring incessantly throughout her compound and ritual language. Unlike typical recuperations of Atatürk’s voice—the reading of his speeches before crowds, their distillation into slogans to promote competing political visions, or simply the theatrical and cinematic staging of his life—Atatürk’s presence in Zöhre Ana’s nefesler establishes him once more as the agent of his own voice:

I left my glory to Turkishness For those ignorant of religion I was unenlightened Now I dispatch a message with you Make me known Zöhre Ana Mustafa Kemal is coming He is extending his glory from Ankara He who knows who is dying I did not die Zöhre Ana . . . . . . . . . . . . . . . . . . . . The entire world knows of the Turkish military I established sovereignty, a national homeland The truth of God is proclaimed in many languages I brought peace and accord to the world Mustafa Kemal’s eyes are like the sea All people were born of Adam and Eve Turn back the English, French, and Greeks Whoever is in need of help while at Kocatepe4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . They added to my name Atatürk I gave my declaration, Ali is my Pir5 My guide Zöhre Ana is my representative

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The Latin alphabet spills from my tongue6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Speak, my Zöhre, speak! Speak without pause Write from the radiance of the dervish’s pen Sometimes boasting, sometimes blushing Mustafa Kemal’s essence belongs to God Hoca,7 you cannot fathom the essence of the Alevi Come establish your Islamic party, it will be for nothing Even I cannot discern Islam, and you? God forbid! Mustafa Kemal Paşa is the one who established secularism

There is little that distinguishes this from other nefesler. As with a typical nefes, a deceased evliya holds forth before his audience, recounting the major events of his life, confirming his position within an ancient saintly genealogy, castigating those who presume to understand God’s intentions, and criticizing unwelcome developments in contemporary society. We also encounter a characteristic ambiguity surrounding the authorship of individual nefesler. Although a nefes may issue from Zöhre Ana’s body (and one could well question the extent to which this speaking body, at these moments, belongs to Zöhre Ana), the identity of the speaking subject regularly shifts over the course of an individual nefes. Nefesler that begin with the visiting saint speaking in the first person to Zöhre Ana may well end with Zöhre Ana, as the primary speaker, addressing the visiting saint. Like other nefesler as well, there is a distinctive spatiality to this nefes, an enumeration of names of significant sites that map a recognizable geography of saintly manifestation. In addition to signaling the (miraculous) ability of her nefesler to bring together figures and landscapes from the sweep of history into a single (linguistic) setting, such a genealogy of names, spaces, and events also designates Zöhre Ana as the manifestation of an ancient voice, with a capacity to speak that has passed along an unbroken chain of holy figures who share a common spirit, or ruh. It is important to note that Zöhre Ana and many of her followers are Alevi, a Shi’i religious minority estimated to comprise 15 to 20 percent of Turkey’s population. Although Alevism encompasses a complex set of interdependent religious, political, linguistic, and ethnic associations, Alevis are widely acknowledged for their long-standing commitment to secular democratic reform, especially as it is personified in the figure of Mustafa Kemal Atatürk.8 Although we could thus read Atatürk’s appearance in Zöhre Ana’s nefesler as an extension of the admiration for Atatürk common among Alevis, I want to underscore the paradox of Atatürk’s presence by drawing attention to the specific historical context of its enunciation—namely, his speaking through Zöhre Ana today. It is here that we can appreciate Zöhre Ana’s nefesler as a distinctive convergence of language and death within secular regimes of truth and history. In particular, these shifting capacities of speaking and inhabiting space that characterize her nefesler, and especially the aura of “past-ness” that enframes them, will prove important for our consideration of the configurations of death and secularism that animate her saintliness.

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To begin with, it is difficult to ignore the seeming irony at play in Atatürk’s presence as a deceased evliya in Zöhre Ana’s saintly discourse. Not only do Zöhre Ana and her followers embody a formation of religious life opposed to the nation’s founding secularist ideals—a form of religious organization that had been expressly targeted for suppression to make way for the current secular political order—but the object of their devotion is generally recognized as the principal agent of this history of religious suppression. In turn, Atatürk’s appearance as a deceased evliya to whom one can appeal for help enacts a relationship to death and sovereignty at odds with the biopolitical economy of life and death at the center of Turkey’s project of secular modernity. Not only was the nation founded on principles that fundamentally rejected the possibility of the founder’s sanctity and the state’s sacredness as a legitimate basis of sovereignty, but the emerging political order whose rationale was the fostering of life had banished death to the limits of political power, where “a civilized society,” as Atatürk invected, would no longer appeal for help. Beyond Atatürk’s presence, this nefes is also noteworthy for the way it juxtaposes idioms of saintly revelation and secularist critique. We encounter, for instance, the interweaving of proclamations of Atatürk’s oneness with God (“Mustafa Kemal’s essence belongs to God”), humanist calls for inclusion (“all people were born of Adam and Eve”), and saintly articulations of explicitly secularist critique. The closing quatrain is exemplary in the latter case, where Atatürk reproaches the claims of Islamists not simply as “the one who established secularism,” but simultaneously as an evliya whose proximity to God allows him to see the incomprehensibility of Islam. Moreover, as this nefes indicates, to recount the saint’s life and miraculous deeds is to recount the story of the nation—the leading of Turkey’s nationalist movement against foreign invaders, the defense of Turkey’s sovereignty, the establishment of secularism as the organizing principle of both state and society, and the sweeping political reform of society (e.g., the introduction of the Latin alphabet to replace the Arabic script, as captured in the wonderful imagery of “The Latin alphabet spill[ing] from my tongue”). Although not reflected in this particular nefes, there is also an important gendered register to the secular modernity of Zöhre Ana’s saintly revelations. Indeed, while there is not space here to adequately address the subject, a secular nationalist discourse of ideal womanhood runs throughout her saintly practices, as an idiom of her saintly wonder.9 These juxtaposing idioms of saintly revelation and secularist critique similarly give rise to a distinctive convergence of temporalities, wherein the historical time of the nation-state—the homogeneous, empty time of successive events (Benjamin 1968; see also Anderson 1991)—braids together with the ancient genealogical time associated with saints. I will have more to say about these converging temporalities in the next section. For now, I want to simply draw attention to the way Zöhre Ana is able to breathe new life into a form of speaking that was to be disqualified as an anachronism in Turkey’s secular modern development. That is, rather than an outmoded voice that speaks from an obsolete past, Zöhre Ana is able to realize a form of saintly discourse capable of speaking in the same tense as the secular nation.10

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In this intertwining of saintly revelation and secularist critique, of divinely inspired poetic speech and the voice of the nation’s secularist founder, we thus encounter Turkey’s project of secular modern development giving rise to an aesthetics that folds back on itself. With Zöhre Ana, the very idioms and temporalities of secularist critique that supported the suppression of such forms of religious authority return to authorize her status as an evliya. Not only do Zöhre Ana’s nefesler represent a capacity of speaking premised on a relationship with death disqualified in Turkey’s project of secular modern development, but the very figure regarded as the principal agent of this project returns to speak the saint’s illicit tongue. And in this conviviality of saintly authority and secular political rule, Zöhre Ana is able to animate a seemingly obsolete form of speech, as she simultaneously reveals both the fragility and infidelities of secular regimes of speaking, history, and truth.

MUSEUMS ETHNOGRAPHIC AND HAGIOGRAPHIC

To extend this discussion of the relationship between death, saintly revelation, and secular reform, I want to turn from Zöhre Ana’s nefesler to their material externality—namely, the complex of buildings where she receives visitors and where the majority of ritual activities occur, a space commonly referred to as her dergâh. Built according to architectural plans that came to her in a series of visions while in the umman, the dergâh is designed to signify the singularity of Zöhre Ana’s saintliness. While resembling the pragmatic and utilitarian modernist vocabulary of much of Turkey’s urban architecture— cement buildings composed of repetitions of parallel lines and corresponding angles—it also expresses a series of departures, particularly in its need to accommodate a range of specialized activities (e.g., spaces for communal worship, an area for performing sacrifices, a kitchen and cafeteria, a wedding salon, a gift shop, a tea salon, numerous guest rooms, an area for preparing bodies for burial, and the administrative offices of her foundation). For our purposes, I am interested in the building’s underground existence. In sharp contrast to the design and organization of space in the main building, much of the dergâh’s subterranean structure has been enclosed and modeled to resemble the interior of a cave. Constructed with walls of textured cement, this space consists of an area cordoned off for receiving visitors, a fireplace for cooking, a simulated well, a series of small ponds lining the walls, a lion-shaped spigot dispensing sacred water (zem zem), and myriad items labeled “antiquities valuable to history” strewn across the floor and hung on the walls. When the area is staffed—as is often the case on spring and summer weekends—visitors will find female followers reenacting a version of domestic village life: women wearing loose-fitting combinations of homemade sweaters, skirts, and headscarves sitting before the open fireplace cooking gözleme (a popular stuffed flatbread) that is to be blessed by Zöhre Ana and sold upstairs in the gift shop. The overwhelming aesthetic of the cave is of a self-consciously construed traditionality—what one reporter, after a visit to the dergâh, referred to as its underground “culture complex” (kültür kompleksi) (“Zöhre Ana Yolun Sonunda” 1999).

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As I read this “culture complex,” the simulated cave relates to the larger dergâh in much the same way that Atatürk’s presence in Zöhre Ana’s nefesler relates to her corpus of divinely inspired poetic speech. The cave, rupturing the linear and symmetric consistency of the rest of the building, combines architectural forms that belong alternatively to the vernacular vocabulary of the tomb (türbe) or dervish lodge (dergâh, tekke) and the state-sponsored ethnographic or folklore museum. Much as in the nefesler, the dergâh thus relies on the idiom and temporality of the secular nation as a means to authorize her saintliness; to return to Mbembe’s vocabulary, the dergâh draws on the state’s “grandeur” in an effort to confirm Zöhre Ana’s own popular “wonder.” As in her nefesler, then, a secular-nationalist idiom reappears to authorize that which was disqualified in the state’s project of secular modern development. In so doing, the historical time of the nation again weaves into the ancient, genealogical time of the saints, allowing them to share not only a common tense but also a common space. Yet there is an older aesthetic commerce at work here, which I want to introduce as a means of extending our consideration of the relationship with death that Zöhre Ana’s saintliness exemplifies and what this communicates about the legacy of secular regimes of history and world making in Turkey. Here, I am particularly interested in the ways that the dergâh, especially its underground kültür kompleksi, rehearses one of secularism’s originary scenes of violence, which consisted of the conditions of possibility for the secular nation as well as the illicit status of Zöhre Ana’s saintliness. Indeed, this is not the first time that such forms of religious practice and the ethnographic museum have come together. In the closure of religious orders, lodges, and tombs that defined the early republic’s project of secular reform, the ethnographic museum played a vital role. Writing in 1937, John Kingsley Birge, the preeminent scholar of Bektashism, noted that with the passage of a series of laws in 1925, “[a]ll tombs of the Sultans and all tombs in connection with tekkes [dervish lodges] were declared closed” and that, as a later law required, “all articles within the tekkes—candles, swords, wall pictures, begging bowls, musical instruments, etc.—should be held for the use of the Ethnographical Museum” (Birge 1937, 84–85). Indeed, many of the former lodges of religious orders—as well as abandoned churches—would in due course be transformed into museums and filled once again with the objects that had been confiscated from them. As institutions that offered historical and archeological support for an emerging political order, ethnographic museums labored at the front lines of the state’s efforts to consolidate a secular nationalist historical consciousness (Kezer 2000; Gür 2007). In our case, the conversion of objects confiscated from religious orders and tombs into museum collections sought to stage a decisive historical partition on which would hinge the nation’s development (from tradition to modernity, ignorance to enlightenment, illness to health, and subjugation to freedom). As such, the architectural idiom of the ethnographic museum assumed a defining role in efforts to desacralize and repurpose spaces and objects that ran counter to secularist visions of appropriate (and nonthreatening) forms of Islamic religiosity, as an aspect of the state’s wider efforts to subordinate religious life

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to political will. In the process, confiscated objects would thereby gain a new life, now as artifacts, and their new purpose would be to function as material remains of a distant, outmoded cultural past that had been surmounted in the nation’s progressive movement forward. As such, Zöhre Ana’s dergâh thus stands as an architectural convergence of juxtaposing configurations of life and death. Although the tomb is necessarily contingent on the saint’s death, it cannot be regarded simply as an endpoint, the terminus of a saint’s life. In fact, for a saint’s followers, the tomb stands as both a continuity (the continuation of the saint’s miraculous powers) and a point of departure, a setting from which networks of social obligation extend into the future and to which one returns regularly to give and sustain life. As such, the saint’s tomb embodies an enduring vitality. The ethnographic museum, while also a space contingent on death, takes part in an architectural discourse animated by a divergent rationale. Unlike the saint’s tomb, the museum functions as an endpoint, a repository of artifacts that speak not to the future but to the passing of a former way of life. Its architecture and design are invested in preserving and displaying material remnants of a former vitality. Within Zöhre Ana’s dergâh, these seemingly incompatible configurations of life and death thus come together to share a common space, not as parody but as an example of Zöhre Ana’s saintly wonder, which is also an unanticipated commentary on their interwoven legacies. Within Zöhre Ana’s dergâh, we encounter the materiality of the state’s historical imagination entering the architectural idiom of the saint’s tomb—a space to whose existence and vitality death is so central. In the process, the dergâh stages in one setting both a historical commerce between saintly and political authority that was foundational to the nation’s secular political order, and the illicit quality of the saint’s voice. At the same time, the dergâh carries this commerce forward. That which was confiscated by the state to confirm its vision of historical progress reappears in the dergâh as material evidence of Zöhre Ana’s place within an ancient genealogy of saintly revelation. Beyond underscoring again the infidelities of secularist discourse, Zöhre Ana’s dergâh—a space by all measures distant from conventional debates about secularism in Turkey—thus bears witness to as it enacts the historical processes of religious subordination that constituted both secularism and the forms of Islamic religiosity it authorized.

S E C U L A R H I S T O R I E S , S A I N T LY R E T U R N S

What then are we to make of the return of these histories of secular reform in contemporary manifestations of saintliness in Turkey? How are we to listen to the voice of a saint struggling to find a home in a political order constituted in opposition to the very powers she claims? By way of a conclusion, I want to turn briefly to a religious tradition and set of events seemingly far removed from our concern with saintliness in contemporary Turkey: the epidemic of demonic possession and accusations of sorcery that gripped seventeenth-century France, which led up to the well-chronicled trials at Loudun. In his

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commentary on the trials, Michel de Certeau (2000) has argued that the key to understanding these events resides in the ways that the language of possession was able to express, as it simultaneously took part in reworking, wider societal reconfigurations of political, religious, and medical authority. In the events surrounding the trials, as representatives of each struggled to claim the right to speak the truth of possession (such that a form of speaking that had once been the priest’s to discern would become, with political backing, a voice to diagnose; where the enigmatic would be transformed into objects of medical classification), one encounters both the instability of truth in the circulation of language and its capacity to reveal social and historical processes that would otherwise remain, as de Certeau put it, “an underground existence, an inner resistance that has never been broken” (2000, 1). As I read de Certeau, such forms of language, when set in motion, are simultaneously iterative and anticipatory. “These languages,” as he puts it, “seem to reject both the limits of a present and the real conditions of its future. Like scars that mark for a new illness the spot of an earlier one, they designate in advance the signs and location of a flight (or return?) of time” (2000, 1). In other words, these forms of language—of possession for de Certeau, or of divinely inspired poetic speech, as I want to suggest—not only display an affinity for attracting expressions of the past (former conflicts, unresolved traumas, the “nocturnal”), but also, in their very expression, establish a site for their future articulation. Indeed, as the circulation of secularist forms through Zöhre Ana’s saintliness indicates, the enmity with which Atatürk and early secular reformers sought to banish the saint from the order of the nation appears to have had the opposite effect. The efforts of reformers to suppress the forms of devotion that the saint embodied, as de Certeau would suggest, marked in advance the speech of the saint as a site of future struggle, which simultaneously marked the saint as a site of future return. Although cast out of the order of the nation, the saint was not so easily banished from history. In our case, this dynamic of past conflict and future return played itself out with particular consistency in the convergence of juxtaposing configuration of life and death within Zöhre Ana’s nefesler and dergâh. Here, the nation’s dead founder—who derided those who appealed to the dead for help, and who sought to eradicate the forms of religiosity associated with the veneration of saints—would return through Zöhre Ana’s nefesler as a saint and the object of just such an appeal. Likewise, the architectural discourse of the ethnographic museum—whose purpose was to provide material support for a secular nationalist historical imagination—would reappear in Zöhre Ana’s dergâh as evidence of her saintliness. These returns, however, are not simply a repetition of past forms. As opposed to the desires of Turkey’s early secular reformers—who would have transformed the voice of the evliya or holy person into a dead language, a lifeless vestige of a premodern “traditional” past—it appears here as a living voice speaking in the tense of the contemporary. “While presupposing earlier rifts,” to return again to de Certeau, “it constitutes a different experience, with a new language” (2000, 23). As such, and importantly, Zöhre Ana’s saintly identity cannot be defined simply by its opposition to secular

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discourse. In fact, she is distinguished less by her oppositionality in relation to secular principles and ideals than by her capacity to manifest a saintly presence through them— a capacity repeatedly noted by her followers as evidence of her miraculous powers. We must take care, however, in too quickly transposing these dynamics of saintly revelation and secular truth onto conventional debates about secularism, especially those being waged over the proper place of Islam within secular-liberal models of democratic governance. Rather than locating our discussion in settings where secularism is being directly contested on religious terms (as one finds in the more common study of “Islamist politics,” “political Islam,” and the like) or among self-described “secularists” who endorse such models of secular political rule and public sociability (see Navaro-Yashin 2002; Özyürek 2006; Turam 2008), I have approached secularism instead by examining a form of religiosity that was excluded from the field of secular debate about the role of religion within democratic state structures. That is, my interest has been with those forms of speaking and practice that were prohibited from the public sphere of free speech and rational debate in Turkey’s history of secular reform—namely, the divinely inspired speech of the saint. In tracing Zöhre Ana’s efforts to find a voice and a home within the legacy of Turkey’s project of secular modernity, it has become evident that hers is not simply a voice of resistance, nor is her speech merely an expression of state power, or its parody. It articulates a relationship to power that cannot be reduced to a discourse of appropriation and instrumentality. Instead, Zöhre Ana’s saintly presence takes shape as a persistent process of formation and return within the conviviality of saintly and state power, where the two can rely on one another’s repertoire of idioms and forms in a common desire for “majesty” and “grandeur” (Mbembe 2001). Although this cannot fully explain why people are drawn to Zöhre Ana—a matter that I consider elsewhere (Dole 2012)—the conviviality of saintly and state forms that one finds here nonetheless attests to the generative force of death’s appearance at the limits of secular rule, where the state’s ideological repertoire can be read as evidence of popular wonder. And through this popular wonder, we can conceive of Zöhre Ana as offering her audiences a novel language for participating in and—for better or for worse, welcomed or not—finding a home within the state’s ongoing project of secular world making, at the same time that it offers the possibility of healing wounds and repairing broken relationships. N OT E S

1. Although I translate the term laiklik as “secularism,” some argue that it is better translated as “laicism” to capture the specificity of Turkey’s model of political secularism (Davison 1998, 2003; Parla and Davison 2008; White 2002; Berkes 1964). Although the term laicism might have the benefit of being a closer linguistic approximation of laiklik and thus better capture Turkey’s indebtedness to French models of laïcité, I will use the term secularism— although imperfect—as a larger category within which laicism could be included. For additional studies of the historical specificity of secularism in Turkey, see Kuru 2009 and Tapper and Tapper 1987.

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2. The term nefes carries the literal connotation of “breath.” It is being used here in reference to lyrical poems attributed to Alevi and Bektashi poets. 3. I can only gesture here toward the sizable scholarly literature that addresses manifestations of sainthood in different Islamic traditions, as well as the complex theological basis of sainthood in Islam (see, e.g., Goldziher 1971; Denny 1988; Smith and Ernst 1993; Faroquhi 1979; Crapanzano 1973; Ewing 1997; Gellner 1969; Gilsenan 1973; Keddie 1972; Cruise O’Brien and Coulon 1988; Basu and Werbner 1998). As many have argued (Cornell 1998; Turner 1974; Denny 1988), we must take great care in applying the label “saint” to the forms of religious life considered here. “When we use the term ‘saint’ to apply to Islamic cases of the holiness of persons,” writes Frederick Denny (1988, 70), “we must do so with the understanding that we are importing a foreign notion that only partially fits the data.” For Denny, the Arabic term commonly translated as “saint”—awliyā (plural of walī, and evliya in Turkish)—suggests one’s proximity to God (e.g., being “one of God’s friends”) rather than an individual’s holiness. 4. Kocatepe was the setting of the Battle of Dumlupınar, the final major battle of Turkey’s War of Independence. 5. The term Pir is commonly translated as “Muslim saint,” and for Zöhre Ana’s followers it was used interchangeably with evliya. 6. One of the significant reforms introduced by Atatürk was the replacement of the Arabic script used for Ottoman Turkish with a modified Latin alphabet. 7. Although hoca (alt., hodja) is used widely as an honorific when addressing a teacher or scholar, it is used here to ridicule what Zöhre Ana regards as a regressive and dogmatic form of Sunni religious authority. 8. Historically, Alevis were generally enthusiastic supporters of Atatürk and the secularist reform he introduced. As a religious minority that had experienced centuries of persecution under the Ottoman state, they had much to gain by secularization policy. While an intense admiration for Atatürk is assuredly commonplace, especially among Alevis, it is worth pointing out again that he is regarded by the vast majority of the Turkish people as a political hero, not as an evliya. 9. It’s important to note that Zöhre Ana is not exceptional for being a female saint. Though the majority of saintly figures in the region are male, there is an established tradition of women being ascribed such miraculous powers. She was distinctive, however, in the ways that gender was performed through her saintliness; as a visitor recalled her first encounter with Zöhre Ana, “She was the image of the Republican generation’s fully modernized Turkish woman.” 10. For a related discussion of the “social tense” of later liberalism, see Povinelli 2011.

REFERENCES

Anderson, Benedict. 1991. Imagined Communities: Reflections on the Origin and Spread of Nationalism. London: Verso. Asad, Talal. 1993. Genealogies of Religion: Discipline and Reasons of Power in Christianity and Islam. Baltimore: Johns Hopkins University Press. ———. 2003. Formations of the Secular: Christianity, Islam, Modernity. Stanford, CA: Stanford University Press.

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Basu, Helene, and Pnina Werbner, eds. 1998. Embodying Charisma: Modernity, Locality and the Performance of Emotion in Sufi Cults. New York: Routledge. Benjamin, Walter. 1968. Illuminations. New York: Schocken Books. Berkes, Niyazi. 1964. The Development of Secularism in Turkey. Montreal: McGill University Press. Birge, John Kingsley. 1937. The Bektashi Order of Dervishes. London: Luzac Oriental. Bozdoğan, Sibel. 2001. Modernism and Nation Building: Turkish Architectural Culture in the Early Republic. Seattle: University of Washington Press. Cornell, Vincent. 1998. Realm of the Saint: Power and Authority in Moroccan Sufism. Austin: University of Texas Press. Crapanzano, Vincent. 1973. The Hamadsha: A Study in Moroccan Ethnopsychiatry. Berkeley: University of California Press. Cruise O’Brien, Donald, and Christian Coulon, eds. 1988. Charisma and Brotherhood in African Islam. Oxford: Clarendon Press. Davison, Andrew. 1998. Secularism and Revivalism in Turkey: A Hermeneutic Question. New Haven, CT: Yale University Press. ———. 2003. “Turkey, a ‘Secular’ State?: The Challenge of Description.” South Atlantic Quarterly 10 (2): 333–50. de Certeau, Michel. 2000. The Possession at Loudun. Chicago: University of Chicago Press. Denny, Frederick. 1988. “ ‘God’s Friends’: The Sanctity of Persons in Islam.” In Sainthood: Its Manifestations in World Religions, edited by R. Kieckhefer and G. Bond, 69–97. Oxford: Oxford University Press. Dole, Christopher. 2004. “In the Shadows of Medicine and Modernity: Medical Integration and Secular Histories of Religious Healing in Turkey.” Culture, Medicine, and Psychiatry 28 (3): 255–80. ———. 2012. Healing Secular Life: Loss and Devotion in Modern Turkey. Philadelphia: University of Pennsylvania Press. Ewing, Katherine. 1997. Arguing Sainthood: Modernity, Psychoanalysis, and Islam. Durham, NC: Duke University Press. Faroquhi, Suraiya. 1979. “The Life Story of an Urban Saint in the Ottoman Empire: Piri Baba of Merzifon.” İstanbul üniversite fakültesi tarih dergisi 32:651–76. Foucault, Michel. 1978. The History of Sexuality. Vol. 1. New York: Vintage Books ———. 2003. Society Must Be Defended: Lectures at the Collège de France, 1975–1976. London: Picador. Gellner, Ernest. 1969. Saints of the Atlas. London: Weidenfeld and Nicolson. Gilsenan, Michael. 1973. Saint and Sufi in Modern Egypt: An Essay in the Sociology of Religion. Oxford: Clarendon Press. Goldziher, Ignaz. 1971. “Veneration of Saints in Islam.” In Muslim Studies, edited by S. M. Stern, 255–341. London: George Allen and Unwin. Gür, Aslı. 2007. “Stories in Three Dimensions: Narratives of Nation and the Anatolian Civilizations Museum.” In The Politics of Public Memory in Turkey, edited by E. Özyürek, 40–69. Syracuse, NY: Syracuse University Press. Keddie, Nikki, ed. 1972. Scholars, Saints, and Sufis: Muslim Religious Institutions since 1500. Berkeley: University of California Press.

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Kezer, Zeynep. 2000. “Familiar Things in Strange Places: Ankara’s Ethnography Museum and the Legacy of Islam in Republican Turkey.” Perspectives in Vernacular Architecture 8:101–16. Kuru, Ahmet. 2009. Secularism and State Policies toward Religion: The United States, France, and Turkey. Cambridge: Cambridge University Press Mango, Andrew. 1999. Atatürk: The Biography of the Founder of Modern Turkey. Woodstock, NY: Overlook Press. Mbembe, Achille. 2001. On the Postcolony. Berkeley: University of California Press. Navaro-Yashin, Yael. 2002. Faces of the State: Secularism and Public Life in Turkey. Princeton, NJ: Princeton University Press. Özyürek, Esra. 2006. Nostalgia for the Modern: State Secularism and Everyday Politics in Turkey. Durham, NC: Duke University Press. Parla, Taha, and Andrew Davison. 2008. “Secularism and Laicism in Turkey.” In Secularisms, edited by Janet R. Jakobsen and Ann Pellegrini, 58–75. Durham, NC: Duke University Press. Povinelli, Elizabeth. 2011. Economies of Abandonment: Social Belonging and Endurance in Late Liberalism. Durham, NC: Duke University Press. Smith, Grace Martin, and Carl Ernst, eds. 1993. Manifestations of Sainthood in Islam. Istanbul: İsis Press. Soileau, Mark. 2006. “Humanist Mystics: Nationalism and the Commemoration of Saints in Turkey.” PhD diss., University of California, Santa Barbara. Tapper, Richard, and Nancy Tapper. 1987. “ ‘Thank God We’re Secular!’: Aspects of Fundamentalism in a Turkish Town.” In Studies in Religious Fundamentalism, edited by L. Caplan, 51–78. Albany: State University of New York Press. Turam, Berna. 2008. “Turkish Women Divided by Politics: Secularist Activism versus Pious Non-Resistance.” International Feminist Journal of Politics 10 (4): 475–94. Turner, Bryan S. 1974. Weber and Islam: A Critical Study. London: Routledge & Kegan Paul. White, Jenny. 2002. Islamist Mobilization in Turkey: A Study in Vernacular Politics. Seattle: University of Washington Press. “Zöhre Ana Yolun Sonunda.” 1999. Sabah, February 5.

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21 THE GOOD AND THE BAD BREAST Cosmetic Surgery and Breast Cancer

Bernadette Wegenstein

I have studied the phenomenon of cosmetic surgery both historically and ethnographically: as a media scholar and feminist theorist in my book The Cosmetic Gaze: Body Modification and the Construction of Beauty (2012); and as a cinema verité filmmaker in my most recent project, the documentary feature The Good Breast.1 In studies whose foci range from the eighteenth-century Swiss physiognomist Johann Kasper Lavater to today’s televisual extreme-makeover shows, I have found a persistent connection between beauty and the promise of moral betterment and happiness. A person’s transformation of her body through cosmetic surgery is not inspired by a single principle, be that rejuvenation, aesthetic change in the service of an internalized racism (Munzer 2011), or sexism (Blum 2005; Weber 2005). Rather, while these cultural hegemonic principles are definitely real and the female body is one of the first places to showcase them, I am interested in the extent to which this change of the body is experienced as a “greater good” to the person undergoing it. One can trace this sense of bettering or “self-improvement” to the principle of the Platonic (and pre-Platonic) kalokagathia (literally, beautiful and good) that started to evolve in the sixth century b.c.e. At that time, the new social class of Athenians was no longer defined purely via an aristocracy by birth but rather via an aristocracy of merit and money organized around the implicit mandate: You must improve and better yourself in order to thrive! In other words, this physical change aims at framing a moral change from good to better that is supposed to overwrite the subjective impression of “appearance,” and that expresses itself on the “outside” while pointing to a happiness that is more than skin-deep. It is at this intersection that my study of cosmetic surgery—what Meredith Jones has

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labeled makeover culture’s most quintessential expression (2008)—connects with my research into the culture and history of breast cancer, an illness that, as S. Lochlann Jain (2007, 505) has it, “demands a surrender to femininity and to the mortality doled out by the feminine body.” I came across breast cancer via my interest in cosmetic surgery and the construction of beauty, and their place in twenty-first-century makeover discourses. I was specifically curious about the overall increase in demand for breast augmentation in the United States over the past decade.2 I wondered if there was a connection between breast cancer and cosmetic surgery, and to what extent women’s suffering through the loss of the breast due to cancer was related to the Christian theme of martyrdom and the consequent idea of being rewarded with a new and better breast after surviving this life-threatening illness. I started working with twelve breast-cancer patients at the Greater Baltimore Medical Center, a top U.S. breast clinic, where I learned that about half of the patients diagnosed with breast cancer who have to undergo a single or a double mastectomy opt for either breast augmentation or (rarely) reduction to customize their breasts to their individual needs and imaginations—as well as those of their partners, children, and others. This suggests that about half of the estimated breast-cancer population for 2013—that is, more than one hundred thousand women3—had cosmetic surgery done on their breasts, amounting to about a third of all breast augmentations listed by the American Association for Aesthetic Plastic Surgery. While this is an interesting fact per se—one that demands attention and more qualitative interpretation than I can currently provide—this chapter deals in particular with beauty’s “dark side,” with the question of the “good” and the “bad” breast, and with the coupling of a deadly illness such as breast cancer with the question of the makeover’s irresistible promise of happiness through, despite, and even because of an illness such as cancer. As Susan Sontag and others have shown in their semiotics of cancer, there is a long history of interpreting breast cancer as something bigger or “other” than its biology—that is, the uncontrolled division of a single cell. In 1826, for instance, the English surgeon and anatomist Sir Astley Cooper said that “grief and anxiety” provoked a woman’s breast cancer (quoted in Bradley 1852). This perspective resonated with the story of one of my current documentary characters: that of Doris, whose boyfriend, Randy, explained that she got cancer because she was “too stressed out” and because she “went back to school”—not a woman’s place. In The Good Breast, her experience with breast cancer and reconstructive surgery is shown in full detail. Innumerable testimonies of cancer patients have shown that they can experience the overcoming of a life-threatening illness such as cancer as rebirth and a chance at a second life. In particular with the case of breast cancer—more so than, for instance, the experience of pancreatic cancer—enduring the loss of a part of one’s body has been a source of women’s desire to share this experience as something existential and an opportunity for expressing who they are or are not as a person and as a woman. The reason for this is obviously the fact that a pancreas does not have the symbolic power to stand in for the whole body or identity of a woman. There is a quite expansive literary and cinematic

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oeuvre—growing exponentially—that documents the experience of breast cancer, in genres such as the domestic ethnographic documentary (e.g., Naked, Baring It All, The Education of Dee Ricks, Tig), the activism documentary (e.g., Pink Ribbons, Inc.), prose (e.g., Before I Say Goodbye, Pretty Is What Changes), photographic series (e.g., The SCAR Project), and more recently blogs and online forums (e.g., ihatebreastcancer.wordpress .com, mbcn.org). Some literary testimonies have become very prominent. One example is the American poet Audre Lourde’s well-known Cancer Journals (1980), in which she gave voice to a silent struggle with the loss of her breasts and delved into what losing the breast to cancer meant to her individual identity as a black lesbian. In recent years, and partly as a result of the “infantilizing pink-ribbon-kitsch-discourse” (Ehrenreich 2009), overcoming breast cancer has been connected not only to a sense of general rebirth, but specifically to the experience of a renewed or reborn beauty. If one considers once again the concept of kalokagathia in the sense of overcoming breast cancer with a “better” or “better suited” breast, this change through breast cancer is strongly tied to the rebirth of a new, reconstructed, and overall better breast than the one before. In other words, we cannot look at the cancer-affected or ill breast alone to understand the blurring lines between illness and beauty. Rather, the ways in which women opt to reconstruct (or not, although it is a very rare choice not to have a breast reconstructed) speak to their entire identity as women, and not just to their breast cancer as such. This realization was a pivotal point in my current work documenting women’s breast cancer, and their breast reconstructions as renewed beauty, in The Good Breast. Further, it was the moment when I understood the “pink-ribbon discourse” not just from an economic and consumer-driven standpoint, but as an answer to the question, What is the relationship between the breast and its reconstructed double in the case of breast cancer?

THE GOOD AND THE BAD BREAST

I have described the place where beauty and death unite as “beauty’s dark side” (Wegenstein 2012, 61–97). This is strongly connected to the ancient concept of femininity and female beauty as masquerade. While beauty is related to the “good” of agathos (see the story below of Saint Agatha), it is equally related to the concept of desire. Thus beauty is not something static or eternal but something that we want and desire to acquire or achieve: every promise of beauty has a vector of desire built into it that says, “I want beauty”; beauty always aims at something beyond itself. Going back to the physiognomists of the eighteenth century and their wish to understand facial expression as revealing a moral behavior underneath the skin, the fear of a “beautiful appearance” is always an expression of the fear that underneath beauty’s perfection and seduction are hidden the abyss and the ugly, which can “erupt” at any time. This cultural topos expresses precisely the idea that beauty is an acquired good, one that need not have always been the way we see it here and now. What does this mean for breast cancer and cosmetic surgery? Perhaps the beautiful breast that has been reconstructed on the site of “ugliness” where cancer revealed itself

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“covers up” an ill or cancerous breast, and becomes a masquerade of cancer itself. To better exemplify this conceptual relationship between the “good” and the “bad” breast in breast cancer, I want to briefly allude both to Simon Richter’s reading of Melanie Klein and to the story of the Sicilian Saint Agatha, who in 251 c.e. gave up her breasts, which were torturously shorn off as a sacrifice for her religious belief in Christ—a sacrifice that made her into the most celebrated female saint in the Catholic world. “I have repeatedly put forward the hypothesis that the primal good object, the mother’s breast, forms the core of the ego and vitally contributes to its growth and integration” (Klein 1975a, 118). In her psychoanalytic, object-relations theory of the good and bad breast, Richter (2006, 65) notes, Klein notably diverges from Freud’s theory of sublimation to the theory of the breast as double, and as signifying both plentitude and lack: “In the baby’s mind, one part of the body can stand for another part, and an object for parts of the body or for people. In this symbolical way, any round object may, in the child’s unconscious mind, come to stand for his mother’s breast. By a gradual process, anything that is felt to give out goodness and beauty, and that calls forth pleasure and satisfaction, in the physical or wider sense, can in the unconscious mind take the place of this everbountiful breast, and of the whole mother” (Klein 1975b, 333).4 As a primal good object, the breast assumes the status of a phallic symbol; but unlike a phallic symbol, which is based on oneness, the breast is based on duality. One breast represents the continuation of life and the source of pleasure, the other, “devouring” breast representing the imminent presence of frustration, loss, and of mortality itself. The good and the bad breast can be illustrated in the myth of Saint Agatha’s sacrifice of her breasts. During the persecution of Christians under Decius in the third century c.e., the Roman prefect Quintinian threatened the young Sicilian virgin and early Christian Agatha with having her breasts amputated if she did not respond positively to his advances. Two folk tales of the story tell a slightly different version of Quintinian’s threat: in one he wanted to marry her and she refused him, upon which he decided to remove her breasts as an assault on her femininity (hence, making it impossible for any other man to desire her); in the other, a Christianized version, he wanted to dissuade her from her love of Jesus Christ, which prevented her from loving him as a pagan, and as a worldly god in his own right.5 The effect of the prefect’s threat on Agatha, however, is consistently narrated according to the canonical tradition of the martyrdom,6 in which Agatha is first broken on the rack, then flayed, and then burned with hot irons. During this torture, Quintinian is said to have asked Agatha one last time to “abandon this idea from your soul, so you can save your life.” Agatha responds by explaining why she chooses torture over following Quintinian’s offer: “I feel much joy in these pains: like someone who is delivered a happy notice, or someone who is reunited with someone he has longed for, or someone who finds a great treasure, so also do I, posed into this suffering of short duration, take great pleasure [gioisco].”7 At this point, Quintinian orders the torturers to amputate her breasts, as has been represented in many famous paintings—for instance, in Sebastiano del Piombo’s Martyrdom of Saint Agatha. (See figure 21.1)

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figure 21.1 Il martirio di Sant’Agata (1520), by Sebastiano del Piombo, Pitti Palace, Florence.

But Agatha warns the prefect once more, “You cruel, inhuman tyrant, do you not feel shame for taking away a woman’s breast, from which you yourself have sucked on your mother? But I have other breasts, that are intact, in my most intimate soul and with which I nurture all my sentiments.” Agatha’s breast sacrifice turns her breast into Klein’s primal good object. Sebastiano del Piombo has rendered her sacrifice with a masculinized Agatha, whose “quasi-phallus-shaped knot in her drapery” (Richter 2006, 27) has been compared to a stand-in for Christ, and her torture a visual allusion to the crucifixion itself. Agatha, “the good,” sacrificed her breast not as an organ that represents fertility, reproduction, and motherhood, but as the symbol of the sacred and the untouchable. Hence, her sacrifice becomes the primal sacrifice by which a loss is turned into a gain, her disfigurement into an aesthetic experience of beauty, and her bad breast into the good and unattainable “über-breast.”

T H E G O O D B R E A S T: A D O C U M E N TA RY I N P R O G R E S S

In the second half of this chapter, I would like to attempt the academically “forbidden” and perhaps “unthinkable”—which is to apply the above concepts to four of the living cinema verité characters in my documentary The Good Breast.8 “Forbidden” because cinema verité supposedly finds the truth in the field and not the other way round (although, as Errol Morris says in Believing Is Seeing [2011], “seeing is also believing”), and “unthinkable” because I want to present these four characters and their desire for cosmetic change and beauty within the experience of their mortality from the point of view of the semiotic square of breast cancer—a qualitative schema that is based not on data and extensive field work, but entirely on interpretation (Greimas 1966). During the film’s editing process we were looking for its story—a normal procedure that, especially with cinema verité, can reveal something different from what one set out to produce. One of

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the storylines that emerged in this laborious process is that of our female characters finding new beauty in the place of ugliness, and exchanging the bad, cancerous breast for the good breast;9 another one is about constructing masculinity in the place of femininity. For all of the following examples, the vicinity and possibility of mortality in the construction of this new femininity and beauty are crucial. After the brief case studies, I will show how these concepts are related in the semiotic square of breast cancer.

1

Elizabeth Hammond, an accountant and home-schooling mother of six from Westminster, Maryland, was diagnosed with breast cancer at age forty-nine, when she went for her annual mammogram on November 15, 2010, the day before her birthday.10 The pathology reported a stage IIB ductal carcinoma in situ (DCIS).11 Her largest tumor was 6 mm, and she had two of them. Elizabeth had two lumpectomies in December 2010, and the first one revealed that out of five of her lymph nodes, two were positive. She started chemotherapy shortly after her surgeries in January 2011. Between her third and fourth treatment, Elizabeth sought the advice of a plastic surgeon, Dr. Gedge Rosson, who specializes in the DIEP flap breast reconstruction, in which blood vessels (deep inferior epigastric perforators), along with the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct the breast. Elizabeth’s mastectomy was done on May 6, 2011, when Dr. Rosson first put in her tissue expanders to help decide whether a DIEP flap could be done. Her reconstruction was done in stages to make sure there was no tumor close to the chest wall; a total of five MRIs and biopsies and their path reports ensured that a DIEP flap could be done, and one was performed on July 25, 2011. A half a year later, in December 2011, Dr. Rosson grafted Elizabeth’s nipple. After a one-year healing process Elizabeth decided to have abdominal modifications (liposuction) and nipple alteration. In April 2013 she had her areola and nipple tattooed by tattoo specialist Vinnie Meyers, recently dubbed the “Michelangelo of nipple tattoos” by Vice magazine.12 This constituted, in Elizabeth’s own words, the “icing on the cake.” Although Elizabeth did not increase her overall breast size, she says her breasts have improved dramatically because they are “fuller on top.” This allows her to show more cleavage than before, and she feels that she is able to fit into her clothes better. While waiting for her nipple reconstruction, Elizabeth decided to have liposuction done to her flanks, putting back a contour into her waistline; but with this procedure a fold was created on her waist “where the front was pulled down and the back wasn’t. It kind of made a strange fold.” Elizabeth explains that because the surgeon took out a lot flesh from the abdomen, the surgery rearranged her body in the wrong way. She felt uncomfortable when sitting down. When modifying the fold, the surgeon additionally liposucted her hips and upper thighs. She had always wanted to have this additional cosmetic procedure, but would not have done it only for the aesthetics of it. However, with the breast reconstruction spanning over a year, she felt it was an opportune moment to have it done. Today there are still holes and

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figure 21.2 Elizabeth Hammond, on the set of The Good Breast, May 17, 2013. Photograph by Sandra Geroux.

depressions in her thighs that Elizabeth wants smoothed out. She is also dissatisfied with a “dog ear” at the end of her scar; additionally, her right hip feels flattened out, but on her left hip there is still extra skin, which she would eventually like to have removed. Finally, the abdominal scars on her hips require more work. She underwent a last cosmetic intervention to fix these features in the fall of 2014, three years after her original diagnosis. As Elizabeth puts it, “I feel I am so much of a better person after being through this. I feel just like Jesus Christ. Seriously, I am more of a conqueror. I have overcome so many things that I would not even have realized. [Like what?] Such as being willing to be vulnerable to people. I say what I really think. I am an influence for positive overcoming. Being able to encourage other people that they can get through a trial. Be those financial problems, marital or health problems . . . there is always something that I can draw on from my experience.” Elizabeth says she is now truly satisfied, more so than ever before, with who she is. Her breast cancer was a process and a trial to help her become a more beautiful human being, not only physically (she finds her body definitely more attractive than it was before), but in her relationships, which she feels are a fuller and richer experience; “I like the new person better.” The most interesting aspects of her testimony are the emphasis on the theme of the breast sacrifice. Elizabeth’s renewed, middle-aged beauty, and a feeling of femininity that she says she had never felt before as intensely, reveal themselves as a makeover strategy to becoming a better person.

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Debra Nelson, a fifty-six-year-old nurse from Baltimore, was diagnosed with stage 0 DCIS in 2009 at age fifty-one. Her biopsy revealed that one axillary lymph node was positive, while her sentinel lymph nodes were all clear of cancer. After a long reflection with her breast surgeon and the plastic surgeon, Debra decided to have a single mastectomy on

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her left cancerous breast, and to keep the other “good” breast intact. While many women opt for a double mastectomy exclusively for the purpose of symmetry, for Debra this was never an option. She mourns the one breast she has lost more than any other woman whose case I have documented over the course of two years, and said she could never have imagined losing a breast that was in fact originally healthy. Debra did feel the need to make her breasts—one “good” and one “bad”—feel more symmetrical; but more than that, she felt the need for the breasts to exchange each other’s flesh and “get closer” to each other in size and shape. After her single mastectomy, she decided to augment the healthy, and originally quite small, breast slightly, to attain a size the reconstructed breast had reached. But that was not enough. After a few years, Debra desired to exchange the nipples, making her original, smaller nipple smaller, and increasing the reconstructed left nipple slightly (see transcript below). Debra’s story is not as straightforwardly positive (to put it mildly) as Elizabeth’s, and this may be due to a troubled femininity that preceded Debra’s cancer diagnosis. Debra maintains not only that she perhaps did not have cancer, but that she does not deserve the treatment she received. At her checkup appointment with her oncologist, Dr. Robert Donegan, in August 2013, Debra arrived in tears and, because of the recent media debate about DCIS and whether it could even be labeled cancer, questioned whether she had had her mastectomy in vain. She said that perhaps she would not have to lose her breast if she were diagnosed today, five years later, when the debates and recommendations around DCIS were being scrutinized. The oncologist calmed Debra down by saying he did not think it was in vain, but he also admitted that many cases of DCIS are indeed overdiagnosed. In the end, he blamed the dilemma of diagnosing and treating DCIS on the preventative culture of overscreening the breast for cancer, and the fact that once you find something, you have to act on it because you don’t know if that particular case of DCIS will spread or not. Debra countered that she somehow wished to be a more “normal” cancer patient, one who had also undergone chemo treatment and radiation, and for whom cancer was a “clear” situation. She compared this to her running team and the experience of vomiting and falling unconscious at the end of a marathon. If that was missing, to her, it felt like she had not earned the “success.” When Debra was prompted by the doctor to share what the loss of her left breast meant to her overall, she answered without hesitation, “It represents everything that I have lost, including my femininity, and especially the fact that I did not have a daughter.” For Debra the loss of her breast is symbolic. She is uncertain if she had cancer and if she lost her breast in vain. This loss now becomes something bigger than cancer. It represents all the losses and missed opportunities in her life, including the daughter she never had. If we consider Klein’s theory in this context, one could claim that she never nourished with her own breast. Debra cannot accept her new breast as “good” because she does not feel that her “old” one was truly ill. For her, as for many people undergoing a bodily transformation in the process of a makeover, the outcome needs to feel “earned” in order to be experienced as a reward, and it needs to display the struggle that the subject endured to achieve betterment. Debra’s dilemma is not easily solved.

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figure 21.3 Debra Nelson discussing her nipple exchange with plastic surgeon Dr. Sheri Slezak, January 18, 2013. Film still from The Good Breast.

In figure 21.3 we see Debra at what she herself calls her “six-month self-imposed doctor’s visit” with her plastic surgeon, Dr. Sheri Slezak. During this visit Debra expressed her desire to have a nipple exchange. Her reasoning revealed her psychological confusion over her own body trauma. The following are portions of the transcript of Debra’s visit with Dr. Slezak from November 30, 2011, during which she displays a clear confusion over two paradoxical sensations in the nipple that showcase her breast trauma: on the one hand, the rubbing of her own “good” nipple against her shirt, which she says bothers her as a marathon runner; and on the other hand, the lack of sensation in the nipple of the “bad” breast due to the missing nerves. In other words, the good nipple in Debra’s mind is “too good” and the bad nipple “too bad.” The doctor listens to Debra’s needs and decides that nipple sharing may be the answer to her problem. dr. sheri slezak: debra nelson:

Not really. It’s not just the fact that it’s numb. I mean, I have sensation, it’s just not pleasurable.

dr. s:

So you can feel it being touched but it’s just not pleasurable? That’s interesting.

dn:

Yeah. And this nipple [points to the right, healthy breast], as you said, “You have dominant nipples.” [Laughs.] It still rubs against the inside of a bra, and it is just kind of annoying to me. So I didn’t know if there was anything you could do with it.

dr. s: dn: dr. s:

dn: dr. s:

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Has it [the sensation] changed at all over the past six months to a year?

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Well, so do you think it’s the size of the nipple? Yeah. The protrusion. Because you could certainly make it smaller. But would that help, is the question. But it wouldn’t rub inside of a brassiere then. Can I look? [She examines her.] Looks great. Perfect shape. One of the best that I’ve ever done. [They talk about how they both enjoy the

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documentary crew filming Debra’s beautiful breasts.] So this nipple bugs you when you’re in a bra, and it chafes? dn: dr. s:

dn: dr. s:

dn: dr. s:

dn:

dr. s:

dn:

Yeah. And I’m still running. Yeah, well, I hear that from women who haven’t gone through what you’ve gone through. Like marathon runners have bleeding nipples and they get really irritated. It’s not that bad. You can make it smaller, but the more you cut away, the more chance you have of more numbness. So you say right now you can feel it, but it just isn’t pleasurable. Would it be better if it were numb? Like, does it actually hurt? Sometimes. So you certainly could make it smaller. But I’m kind of surprised that you asked that, because that’s your normal side. I know. I know. And I liked it before, I mean when I had two that size. But after the augmentation, it became even more pronounced. And it’s true. When you augment, your breast is more forward, so you probably see it more than you used to. Sure.

dr. s:

But would smaller be better? Is that the question? A smaller nipple? Not sticking out as much?

dn:

In my mind, that’s what I wanted to talk with you about. So you’re saying one of the consequences could be that there would even more change in sensation?

dr. s:

dn:

dr. s:

dn: dr. s: dn: dr. s: dn:

Yes. So what you’d do is essentially what you did before, the nipple sharing—you’d take the lower half and make it even a little bit smaller, which would match this one better. Do you ever want that one bigger? Well, you said something one time about putting a little purse string around it? I could do that, but if you want that one smaller I could take a little bit of that and put it over here again. Oh really? Yeah. And you think it would take again? Mmm-hmm. Nipple sharing. You could do it as an outpatient? [Looks excited and satisfied.]

Two weeks later, the plastic surgeon performed the nipple exchange and, still under local anesthesia, Debra felt much better. Debra has been going back to her doctors, the

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plastic surgeon or the oncologist, to requestion and relive her breast trauma. The one thing that seems to make her happy is to feel her breasts, and her nipples, in a new way. As pointed out recently by Joanna Montgomery (2013) in her Huffington Post piece about her breast reconstruction postmastectomy, women who receive new breasts after a mastectomy struggle with the reception and acceptance of these new breasts in two ways that are absent from women who merely have “boob jobs” done: one, they may have never imagined these breast augmentations before their cancer, as in Debra’s case, and therefore have a harder time incorporating that new body image into their overall identity; and two, as Montgomery points out, these new “foobs” are far from being real breasts: “What is attached to my chest right now are a pair of silicone implants with no breast tissue in front of them. I am essentially sporting implants covered with skin.” This difficulty is evidently a result of the mastectomy and sometimes radiation treatment; they make it very hard to surgically reconstruct a breast in the place of thinned skin due to cancer. Debra struggles with accepting her reconstructed “good” breast as good, and her nipple sharing is an attempt to “go back to normal,” as she puts it, or “as it was before.” Debra refers to herself as the “old” and the “new” Debra. The cancer and the breast reconstruction have changed her identity, and she is working on accepting her new body image. It is hard for her doctors and us documentarians to understand her perceived failure. The plastic surgeon stresses that with patients like Debra, reconstruction never ends. It is impossible to really “cure” such patients, and Debra is one of them.

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Katherine (Katie) Martinez is a PhD student working in Cancer Prevention and Treatment Demonstration at the Department of Epidemiology at Johns Hopkins Bloomberg School of Public Health.13 Katie was diagnosed with a 1.7 cm invasive ductal carcinoma throughout her breast at the young age of twenty-seven in 2009. After a successful chemo treatment, her lymph nodes were clear of cancer, yet her tumor had a high KI-67 proliferation index and was moving very fast.14 The FDA approved the drug Herceptin, used to treat HER2-positive metastatic breast cancer, the day Katherine was diagnosed. Her breast cancer was in fact HER2-positive, and Herceptin saved her life. At the time of her diagnosis, Katie was married to a man and was trying to get pregnant. She had to undergo several lumpectomies, and four difficult treatments with the chemo drug Taxil that led to the yellowing of her skin and abrupt menopause. In addition, she experienced nausea and depression during the entire treatment. After this experience, Katie elected to have a double mastectomy and breast reconstruction. Further, she divorced when she realized she was gay. Katie reports having experienced a sexual reawakening in a newly found masculinity that gave her a new sense of beauty and self-esteem. In a way, by negating her hetero-normative femininity, she was able to regain strength and find new love as a lesbian. She remembers how her illness influenced her heterosexual relationship in a negative way: “I had a husband and

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he was physically present but he was like addicted to the video game World of Warcraft. It was like his escape route. When I was sick, he would put on his headphones and play that. I spent a lot of time lying in bed watching movies, and he never came in and watched a movie with me or anything, so it was pretty lonely.”15 Katie talks about her femininity as a heterosexual woman before her cancer diagnosis and a gay woman afterward: I don’t think femininity is something that is determined by parts, but instead it’s in your brain. And the way you see yourself and the way you interact with the world. I was always in a way better position dealing with these things. I have always been pretty confident, sexually independent. I have not felt shame about my body in my lifetime, where there are other women who have felt that way before they get cancer and it just adds to it. I have had partners that have not cared or not been grossed out. To be honest for my own sense of confidence I wear a bra if I am having sex. It gives me an illusion that everything is normal. I can look down and be, like, right, that’s what it looks like. It hasn’t affected me too much, but I do think it has an impact on a lot of people.

Recently, at the age of thirty-four, Katie went into menopause and realized that she won’t be able to have children anymore, which she admits affects her sense of femininity: “I know that having children does not make or break a woman, but sometimes it just feels unfair that I never got the opportunity all because of a 1.7 cm tumor. For being so small, it really upended my life.” Katie has been cancer-free for seven years now, which technically signifies that she is cured of the disease. As a result of her breast cancer she gained a new self and a new happiness that she finds in a certain negation of a traditional femininity that she left behind. She refuses the title “breast cancer survivor,” and instead prefers to think of herself simply as a cancer survivor. If I hadn’t gotten cancer I wouldn’t be as happy as I am now. If I hadn’t gotten cancer what would’ve happened is that I would’ve gotten pregnant with his kid, and I would have never come to Hopkins, never would’ve got a PhD, and I would still be living in a subdivision in San Jose, and I would be miserable. But I don’t like to say that cancer is the best thing that happened to me. Because cancer is never the best thing that happens to anyone. The trajectory of getting cancer and then not being able to have a baby, then wanting to pursue other things, ultimately made me a lot happier now. But also destroyed my marriage, because I couldn’t settle for anything less than what I really wanted. After you have confronted death it’s really hard to go back to mediocrity.

By negating the term “breast cancer survivor” Katie points to the mastectomy as gendered stigma and the “femininity trap” that it produces: it forces women into the markedness of the breast and doesn’t let it become a political question. S. Lochlann Jain asks the pivotal question, Can women not show their chests in public because they are women,

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figure 21.4 Katherine Martinez. Image © David Jay/ The SCAR Project.

or because they have breasts? (2007, 515). She bases her answer on her experience of a mastectomy without breast reconstruction, recounting the taking off of her shirt during a yoga class in small-town Canada and saying, “Look or don’t, I used to have another body that you couldn’t by law look at, but now I have this body that you can, because its breasts have been taken off and in that place remains a flat space that is sort of coded male but really is very different, and when I take off my shirt you can see that, and anyway, why should males get to hoard masculinity and shirtlessness to themselves?” (516). Jain elaborates on what it means to have breast cancer as a gay woman, pointing to the fact that there is no subject position available for cancer butch: “[T]he public coding of breast cancer provides a strange inter-gendered space such that the butch woman literally cannot be tough ‘battling’ cancer, and still maintain a gender identity as butch” (521). Jain is right in that the “adopted masculinity” through the experience of breast cancer is equally feminized, in that it is a negation of femininity and not its own subject position. (See the semiotic square of breast cancer that follows the next case study.)

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figure 21.5 Shelia Westry during a prayer the night before her mastectomy on May 24, 2012.

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Shelia Westry was fifty-two when she was diagnosed with stage IV triple negative breast cancer on November 11, 2011. Her right breast contained a 17 cm tumor, and she also had regionally advanced breast cancer. Because of this late discovery, Shelia had poor response to induction chemotherapy. Shelia was a religious person before her diagnosis, but she faced her mortality with a renewed and strengthened faith in the midst of her caring family. Breast cancer runs in Shelia’s family: her mom died of it, and several aunts. The night before her mastectomy the family gathered to talk about the past and the future. The younger family members were scared. Pastor Parker uttered a special prayer for Shelia’s upcoming mastectomy, but clarified that only the Lord would decide if Shelia was to survive or not. The family members referred to Shelia as a saint. But she countered with modesty: “A saint is someone who walks with Jesus. I am not saint. I wish I was.”

T H E S E M I OT I C S Q U A R E O F B R E A S T C A N C E R

The semiotic square was introduced by Algirdas J. Greimas (1966) to interpret semiotic signs through the opposition of concepts. In the case of breast cancer, it helps us see the apparently paradoxical promise that breast cancer holds for some of its victims: not exclusively a threat of death, but also the possibility of escape from a prison constructed by the desires of others. (See figure 21.6.) The myth of Saint Agatha is, in many ways, the primal exploration of this paradoxical relation between femininity, death, and freedom through the excision of the very symbol of femininity and, indeed, of life itself. By equating the bad breast of cancer with constraints of a variety of kinds, the choice to mastectomize and replace that breast with one of one’s own making becomes like Agatha’s choice to render up her own breasts rather than give up her virtue. Thus it turns into an ultimate demonstration of kalokagathia, of the good that real beauty—beauty that is more than skin-deep— should always hold. When one of the subjects of The Good Breast was asked what was more

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figure 21.6 The semiotic square graph for breast cancer. Design by Maarten Ottens.

important to her in the reconstruction of her breast—her life or the breast itself?—she answered immediately that it was her breast. The fixation on the breast is what drives our culture. Cosmetic surgery, cancer rallies, and domestic ethnographies are only the effects of this fixation. But in order to understand cosmetic surgery, we need to understand the body parts that demand the change.

N OT E S

1. I began developing the documentary The Good Breast in 2011, shooting a total of approximately five hundred hours through 2015. The independently funded film was produced by Jon Reiss and coproduced by Rebecca Messner, edited by Victor Livingston, and produced and directed by Bernadette Wegenstein. It will be released in Fall 2015. 2. The American Society for Aesthetic Plastic Surgery (ASAPS), “Cosmetic Procedures Increase in 2012,” http://www.surgery.org/media/news-releases/cosmetic-procedures-increase-in-2012. 3. The National Cancer Institute estimated that 232,340 women would be diagnosed with breast cancer in 2013. See SEER n.d. 4. Klein’s theory is important because it describes women’s ability to contribute to culture in a primal and not secondary sense. This is unlike that of Freud, for whom the “riddle of the

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nature of femininity” was “reduced to a function and functioning whose historic causes must be reconsidered: property systems, philosophical, mythological, or religious systems—the theory and practice of psychoanalysis itself—all continually, even today, prescribe and define that destiny laid down for women’s sexuality” (Irigaray 1985, 129). 5. It is likely that these two stories are a pagan and a Christianized version of the same story. 6. These are oral tales by the people of Catania. 7. The dialogue here represents my own translation from the Italian of the hagiographic acts of Agatha’s martyrdom. See “Il Martirio” 2011. 8. I would like to thank my entire production team for their efforts in helping me bring my theoretical ideas onto the screen in the shape of a cinema verité essay film. 9. I would like to thank my editor, Victor Livingston, for his help in articulating the story of breast cancer and martyrdom in relation to my characters. 10. All patient-characters in The Good Breast signed HIPAA privacy agreements to disclose their health information in the context of this study. This patient story, however, was not included in the feature documentary but only in the form of an individual webisode. 11. See the recent debate on whether or not to call DCIS (ductal carcinoma in situ) cancer at all, because of the recommendation from a working group at the National Cancer Institute published in the Journal of the American Medical Association, discussed by Tara Parker-Pope in the New York Times blog on July 29, 2013 (http://well.blogs.nytimes.com/2013/07/29/reportsuggests-sweeping-changes-to-cancer-detection-and-treatment/?_r = 0). 12. http://www.vice.com/read/breast-cancer-survivors-find-the-michelangelo-of-nippletattoos. 13. I met Katie when I was doing my research on breast cancer, outside the breast clinic where I filmed The Good Breast. 14. A KI-67 proliferation index over 35% is considered high, and Katie’s was 95%. 15. The original interview was conducted by my research assistant and student Komal Kumar on November 17, 2011, and followed up by me on September 6, 2013.

REFERENCES

Blum, Virginia. 2005. Flesh Wounds: The Culture of Cosmetic Surgery. Berkeley: University of California Press. Bradley, J. C., M.D. 1852. “The Reciprocal Agencies of Mind and Matter.” In A Collection of Papers on the Subjects of Medicine, Surgery, and the Collateral Sciences. New York: Struyer & Townsend. Ehrenreich, Barbara. 2001. “Welcome to Cancerland.” Harper’s Magazine, November. http:// barbaraehrenreich.com/website/cancerland.htm. ———. 2009. Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. New York: Metropolitan. Greimas, Algirdas J. 1966. Sémantique structural: Recherche de méthode. Paris: Larousse. Irigaray, Luce. 1985. Speculum of the Other Woman. Translated by Gillian C. Gill. Ithaca, NY: Cornell University Press. Jain, S. Lochlann. 2007. “Cancer Butch.” Cultural Anthropology 22 (4): 501–38. Jones, Meredith. 2008. Skintight: An Anatomy of Cosmetic Surgery. Oxford: Berg.

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Klein, Melanie. 1975a. Envy and Gratitude and Other Works, 1946–1963. New York: Delacorte Press/S. Lawrence. ———. 1975b. Love, Guilt and Reparations and Other Works, 1921–1945. New York: Delacorte Press/S. Lawrence. Lorde, Audre. (1980) 1997. The Cancer Journals. San Francisco: Aunt Lute Books. “Il Martirio.” 2011. Basilica Cattedrale Sant’Agata V.M. Catania. www.cattedralecatania.it /martirio.aspx. Montgomery, Joanna. 2013. “Me and My Foobs: What It’s Really Like Post-mastectomy.” Huffington Post, September 13. http://www.huffingtonpost.com/joannamontgomery/postmastectomy-my-new-foobs_b_3886195.html. Munzer, Stephen R. 2011. “Cosmetic Surgery, Racial Identity, and Aesthetics.” Configurations 19 (2): 243–86. Pope-Parker, Tara. 2013. “Scientists Seek to Rein in Diagnoses of Cancer.” New York Times, July 29. http://well.blogs.nytimes.com/2013/07/29/report-suggests-sweeping-changes-tocancer-detection-and-treatment/?_r = 0. Richter, Simon. 2006. Missing the Breast: Gender, Fantasy, and the Body in the German Enlightenment. Seattle: University of Washington Press. SEER (Surveillance, Epidemiology, and End Results Program). N.d. “SEER Cancer Statistics Factsheets: Breast Cancer.” National Cancer Institute, National Institutes of Health. http:// seer.cancer.gov/statfacts/html/breast.html. Sontag, Susan. (1979) 1990. Illness as Metaphor; and, AIDS and Its Metaphors. New York: Doubleday. Weber, Brenda R. 2005. “Beauty, Desire, and Anxiety: The Economy of Sameness on ABC’s Extreme Makeover.” Genders 41:1–24. ———. 2007. “Makeover as Takeover: Scenes of Affective Domination on Makeover TV.” Configurations 15 (1): 77–99. Wegenstein, Bernadette. 2012. The Cosmetic Gaze: Body Modification and Construction of Beauty. Cambridge, MA: MIT Press.

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22 ATTACHMENTS OF LIFE Intimacy, Genital Injury, and the Flesh of the U.S. Soldier Body

Zoë H. Wool

T H E R E P R O D U C T I V E C A PA C I T Y O F T H E U . S . S O L D I E R B O DY

The value of American soldierly life is exceptional and ambivalent, forged at the melting point between the sacred, the sovereign, and the imminently killable (MacLeish 2013, 12). While soldiers’ lives are often considered in terms of death and material destruction, their bodies have also long been bound to the reproduction of life in normatively gendered and nationally valued forms (Canaday 2009; Linker 2011; see also Mosse 1998, 1990). Across this uneven field of valuation, the bodies of injured soldiers have emerged as uniquely compensable among forms of American life (Linker 2011).1 Though the stereotype of the war-crazed U.S. veteran endures against a background of Vietnam-era scandals of neglect and mistreatment, today the grievously war-injured soldier body is treated as both virtuous and valuable (cf. Lambek 2008)—a living and iconically male body marked by his closest encounter with that “ultimate sacrifice” of war: death. And yet, in the presence of such exceptionally worthy fleshy forms, the elliptical proposition of “better off dead . . .” springs eternal; contemporary American soldierly life does not escape those normative arrangements of flesh that qualify a body for worthy life under liberal regimes of bio- and necropolitics. Under such regimes, worthy life is vested in a full, rights-bearing personhood that entails, among other things, particular alignments of flesh, gender, sexuality, and dependencies and attachments legible as chosen by, and capacitating of, rational, agentive, self-sufficient, and individuated human beings.2 These alignments are understood to qualify a body for a life worth living,

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even in the case of war-injured American soldiers whose bodies are, arguably now more than ever, imbued with the highest national value. Drawing on ethnographic fieldwork with such injured soldiers in 2007–8 at Walter Reed Army Medical Center, the flagship of American military medicine, my effort here is to trace how gender, sexuality, and life worth living get nested within each other and routed through soldiers’ actual flesh. I do this by thinking about and around genital injury, situating the remaking of life and limb at Walter Reed within a perennial concern that soldiers with genital injuries might indeed be better off dead.3 Within a liberal logic that collapses gender, sexuality, and the worth of life into specified forms of individuated human bodies, the living body of the grievously injured American soldier thus presents a particular problem: a figure of exceptionally worthy heteronational citizenship and iconic masculinity captured in an emasculated and “invalidated” form (Hughes 2000). I understand this concern with soldiers’ lives and genital injuries as one that resonates with many other forms of flesh and forms of life.4 The ethnographic effort at hand thus moves us away from the soldiers’ bodies in themselves—as if they contained problems of gender, sexuality, and life itself within the limits of their own flesh—and toward a broader fleshy puzzling of gender, sexuality, and life through and across multiple bodies and their forms of attachment, arrangements of flesh, modes of touch, and the regimes of intimacy that coordinate them.

T H E R E M A K I N G O F L I F E AT WA LT E R R E E D

Since it opened its doors in 1909, Walter Reed has been bound to the frictions of soldier carnality, even as they shift across eras of American war making. Mere miles from the White House, it is both a public staging ground for careful and historic displays of injured soldier bodies and a zone of life within which injured soldiers’ precarious lives are stabilized and remade.5 During times of war, it becomes a space in which national anxieties about value and virtue are publicly dramatized and intimately born in the bodies of injured soldiers, and where the exposed lives of soldiers must be shored up and supplemented by medical technologies, national symbolic and material investments, and corporeal attachments. First designated for the treatment of combat-injured soldiers during World War I, it quickly became the place where the moral and political promise of postwar rehabilitation would be publicly fulfilled: where, as historian Beth Linker (2011) has shown, injured soldiers could be remade into socially reproductive men, thereby repurposing what would otherwise have been war’s insufferable waste. Normative forms of productive masculinity have thus been key to American rehabilitation since its very beginnings.6 In the shadow of the corrupt Civil War pension system, an early emphasis of rehabilitation was cultivating financial independence, re-forming injured bodies into wage-earning men (Linker 2011). By the aftermath of World War II, turning these wage-earning men into proper husbands and fathers by working on the sexual and reproductive capacities

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of their bodies was already becoming more pronounced (Serlin 2006, esp. 171; Gurtler 2013). With these interventions into the heteronationally reproductive capacities of injured soldier bodies, American postcombat rehabilitation has increasingly edged soldiers away from the queerly multiple homosocial attachments of military life and toward a hoped-for heteronormative domesticity.7 In the post-9/11 era, achieving this domestic and sexual arrangement is emerging as the apotheosis of successful rehabilitation. The emphasis on both marriage and fatherhood as the barometer for an injured soldier’s very ability to live on is ubiquitous, both in talk about injured soldiers’ future lives and in the practices through which their bodies are prepared for future life. And for the first time in American history, the body of virtually every injured soldier at Walter Reed is surrounded primarily not by his fellows but by a family member— whenever possible, a wife or girlfriend. This family member is capacitated as what is called a Non-Medical Attendant or NMA, receiving a per diem (sixty dollars during my fieldwork) and living with a soldier in his cramped on-post hotel-type room throughout the protracted medical and therapeutic stabilization of the body, a period that can easily stretch into years. Though military injury and survival rates are far from transparent, it is fair to say that soldiers today survive injuries that would have killed them in previous wars (Goldberg 2010), and throughout the wars in Iraq and Afghanistan, the largest portion of injuries sustained by U.S. soldiers have been from the class of weapons known as improvised explosive devices (IEDs). The vectors of force of an IED are sheered and shaped by the physical specificities of military tactics and battle space, by the kinds of armor the military constantly redesigns to keep soldiers from dying, and by the responsiveness of battlefield medicine, which finds new ways to intervene in the midst of these forces and to keep soldiers alive. Though soldiers can get blown up by an IED and still walk away relatively unscathed, the injuries of survival form a specific array of multiple confounding conditions, including wounds caused by burns, shrapnel, or other infection-susceptible foreign matter, broken or shattered bones, traumatically amputated limbs, organ damage or rupture, concussively flayed skin, and broken eardrums, along with the new “signature injury” of traumatic brain injury (TBI)8—a combination clinically known as polytrauma. Jake, for example, was a national guardsman in his midtwenties who spent years at Walter Reed, sometimes sharing a room with his wife, sometimes with his mother. He had been injured while inside an armored vehicle that drove over an IED outside one of Iraq’s holiest cities in 2006. In addition to the injuries he sustained in the blast itself, including the shattering of his right foot, there were others he suffered while trying to clamber out of the vehicle, full armor on, while rounds of ammunition cooked off inside. At Walter Reed he went through scores of surgeries to reconstruct his foot, eventually enabling him to move from using a wheelchair to a cane. But without enough flesh to pad his heel, and with a surgically fused ankle joint, even after months of physical therapy he was unable to walk for more than fifteen or twenty minutes without excruciating

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pain. He diligently tried various therapeutic techniques offered, but after a round of aquatic therapy brought no improvement he began lobbying for an amputation. About a year and half into his stay at Walter Reed, he finally got it. He would spend another year and half there, three years and twenty surgeries in total, and along the way he got married, was dad to one child of a different father, fathered one child of his own, struggled with depression, and witnessed the degeneration of his marriage, which culminated in an agonized separation after his wife hit him during an argument a few months after his amputation. Though, like Jake, injured soldiers were likely to be in and out of the hospital for scores of surgeries throughout their time at Walter Reed, there was generally a period of weeks of intensive inpatient care, when their bodies were too open or too fragile for soldiers to venture too far from the hospital bed, and then many months stretching into years of outpatient medical and therapeutic intervention through which the body was stabilized in its new form. As outpatients, soldiers lived for months or years with their NMAs, and sometimes their own young kids, mostly in one of the two hundred rooms of the on-post Mologne House Hotel, others in the nineteen rooms of the nonprofit communal family-style Fisher House. Although soldiers and NMAs spent much of the first half of each day in physical therapy or at other appointments in the hospital, daily life at Walter Reed unfolded with remarkable boredom largely beyond such obviously institutional spaces. Soldiers killed time smoking on patios, watching movies or playing video games, breaking up the intractable days with trips to the mall or nights at the bar or special events intended to honor “Wounded Warriors.” It was across all these spaces that soldiers spent years engaged in an effort of remaking life not at all captured by the term rehabilitation. Throughout all of this, Non-Medical Attendants were “attending,” for example, to wound care, toileting, medications, making and keeping hospital appointments, and staying on top of endless amounts of paperwork. But NMAs were also fiancées or wives, or parents, cousins, or best friends, obligated by kinship and love to the bodies of their most significant others (Wool and Messinger 2012). They enervated Walter Reed’s institutional space with the nervous conditions of domestic dramas, and life there was made as an uncanny simulacrum of the normative domesticity soldiers were supposed to be rehabilitating toward. Though American postwar rehabilitation was always about remaking men, it never looked quite like this, with flesh being rendered sufficient for life by ideally securing it within that “thinnest embrace of the conjugal couple” (Povinelli 2006, 46)—a relation that amounts to much more than a pair of socially valued gender roles called by the names husband and wife. Elizabeth Povinelli elaborates the conjugal couple as an intimate political relation of liberalism in which two gendered bodies become sexually oriented toward each other; through the force of “true love” that brings their bodies into impassioned and regulated contact and proximity, each may be made as a properly enfleshed liberal individual (Povinelli 2006, 175–236). The conjugal couple, rather than the group (Povinelli 2006,

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181)—a competing social form of military life beyond the rehabilitative context of Walter Reed—is a carnal arrangement. Within this arrangement, flesh that might otherwise be too attached or not attached enough can be made as a properly individuated, selfsufficient, gendered, and whole person in the contemporary United States (among other spaces governed through late liberal democracy). Here, the intimate dependencies constituting a conjugal couple “count as freedom” rather than “undue social constraint” (Povinelli 2006, 3), capacitating a properly liberal individual. This proper configuration of self-making dependencies acquires special consequence in relation to the “dilemma of disabled masculinity” (Shuttleworth, Wedgwood, and Wilson 2012). This dilemma is presented by normatively gendered bodies that take a form of debility or difference that undermines liberal enactments of independence, heteronational masculinity, and the fleshy sexual practices that constitute normative political relations of intimacy (McRuer 2006a; Shakespeare, Gillespie-Sells, and Davies 1997; cf. Berlant 2000). It is a problem of the intimate dependencies of personhood rerouted through bodies and beyond the limit of normative arrangements of masculinized flesh (e.g., Shuttleworth 2004; Shakespeare 1999; Tepper 1999) and supposedly universal embodiments of citizenship (Davis 2002b). In myriad ways, conjugal couplehood was built into and imminent in life at Walter Reed as a heteronationally reproductive solution to the threatening dilemma of disabled masculinity. For most soldiers, conjugal couplehood already held a special place within the “vicissitudes of love” (MacLeish 2013, 134) that characterize U.S. army life. And it came to bear on soldiers’ bodies with newly focused force at Walter Reed in the normative orientations of daily life, explicitly rehabilitative and otherwise, and through soldiers’ own emphasis on the possibility of stabilizing and capacitating their emergent selves through the normativefuture-making orientations of heteronormative sexual contact and domesticity. A new rehabilitation facility included a family room with a kitchen, table, and chairs where soldiers and families could practice cooking and eating together as part of occupational therapy. Special dinners and sports trips could accommodate soldiers and any guest but anticipated soldiers and their wives or girlfriends. Evidence of heteronormative sexual contact was pointed to as a sign that life blown apart could be properly enfleshed. Soldiers, including Jake, not only had, and joked about having, heteronormative, penetrative sex with their wives but also asked their wives to become pregnant in this way. That so many got pregnant was reflected in the nickname “Walter Breed” occasionally trotted out by soldiers with a certain amount of self-satisfaction. Conversely, the absence of sex was pointed to as a sign that attachments had become strained and self-founding intimate relations estranged, transforming girlfriends or wives into “nurses” or “roommates,” and threatening the aspirational forms of life to come. And the form and function of soldier’s genitals were woven into many other concerns, surfacing almost incidentally. Carl, a recently married double amputee, sat on the counter in the Fisher House kitchen, his two prosthetic legs dangling below. He said he had developed a nagging

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infection in one stump and that just as he was thinking “What the fuck can go wrong now?” he started urinating blood. This was attributed to an interaction among some of the many medications he was on. He said they kept him on Viagra and switched his antidepressants from Prozac to Zoloft, but he was still urinating blood. Peter, a nineteen-year-old reservist, stepped on an IED shortly after arriving for his first tour in Iraq. He said he’d been lucky to be wearing his skirt that day. The skirt is a removable piece of Kevlar armor that attaches to the vest or SAPI (small arms protective insert) plates protecting the torso, hanging down in front to protect the genitals and proximal arteries. It was cumbersome, and given the extra eighty to one hundred pounds that armor and gear added to a soldier’s frame, shedding weight was certainly welcome. But as I listened to Peter and another soldier discuss why soldiers didn’t want to—and sometimes didn’t—wear the skirt, neither weight nor agility was a sufficient explanation. These deliberations hinged on the gruesome irony that soldiers considered the skirt emasculating. Jake, like many soldiers at Walter Reed, had an injury story with which to responded to the question “What happened?” that was often asked by the endless stream of grateful strangers who passed through. As a genre, such stories were pithy, gruesome, brief, and laced with gallows humor. They included details about what pieces of hot metal penetrated a soldier’s flesh in what spot, and how many procedures of which kinds a soldier had since been subjected to, counting surgeries, or pints of blood products received, or the seconds or minutes of technical death the soldier survived. Like all of them, Jake’s story omitted much, like the fact that he had been on fire as he scrambled out of his blown-up vehicle, but he always made sure to joke that “a piece shrapnel came millimeters away from making me a eunuch.” Discernable across such practices and logics is a fleshy linchpin of love and life: a correspondence of soldierhood, manhood, personhood, and genitals that exerts its pressures within the late liberal “empire of love” (Povinelli 2006). Time and again, as eras of war making unfold through varying structures of feeling and contours of normative intimacy, this correspondence is rendered as if it were a straightforward equivalence; as if the form and function of a soldier’s genitals were, in themselves, the contours of his manhood and the worth of his living on.

T H E U . S . S O L D I E R ’ S P U B L I C S E X U A L A N AT O M Y

During the protracted closing years of the American war in Vietnam, vociferously antiwar senator and soon-to-be Democratic presidential candidate George McGovern stood on the floor of Congress and declared: “In one sense this chamber literally reeks of blood. Every senator here is partly responsible for that human wreckage at Walter Reed and all across this land—young boys without legs, without arms, or genitals, or faces, or hopes.” The speech was excerpted the following day on the front page of the New York Times and circulated widely and rapidly. It was celebrated by the political left as an impassioned

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call to end an unjust war, and it still maintains citational relevance, forming a minor part of the American left’s antiwar canon.9 Though not generally discussed, the way McGovern specified and ordered these bodies matters: they are boys without legs, arms, genitals, faces, hopes. Missing arms and legs signal the human costs of war, and in the historical context of American practices of rehabilitation it is precisely injuries that form the redemptive foundation on which rehabilitated or even “bionic” life can be built through prosthetic technologies. Hopelessness, futurelessness, the worthless status of “human wreckage” thus appear as a concatenation of those aspirational injuries with the gendered absence of fleshy fetishes in which manhood and reproductive futurity (genitals) and basic human recognition (faces) are supposed to reside. Some three decades later, as injured soldiers once again filled Walter Reed in the aftermath of U.S.-led military interventions in Iraq and Afghanistan, limb amputations remained the most iconic procedures (the “signature injuries” of these wars—PTSD and TBI—do not mark the body in obvious ways), and, as has been the case throughout modern American war, the preponderance of them are of the lower limbs (Stansbury et al. 2008). And the body of the soldier so marked is bound, perhaps more than ever, to a normative sexual anatomy of masculinity and its intimate orientations.10 Perhaps it is not surprising, then, that in late 2011 reports began to appear in the U.S. media positing soldiers’ genital injuries as a problem of life or death. Veteran war reporter David Wood devoted one part of the ten-part Pulitzer Prize–winning article series Beyond the Battlefield to genital injuries (Wood 2011, 2012). The stories he tells about them are stories of heteronormative sexual penetration and reproduction. Testosterone therapy, erectile-dysfunction drugs, and surgery are posited first and foremost as paths to a semblance of heteronormative sexual contact, rather than, say, to bodily integrity or solitary sexual function or pleasure. The piece naturalizes a healed soldier body as one that can sustain, and be sustained by, heteronormative intimacies and attachments, making genital injury matter in relation to a normative and concomitantly disability-phobic and trans-phobic fleshy essence of manhood. (The section of the series about genital-reconstruction surgery is introduced by the quotation: “I ain’t going to no sex-change doctor.”) This problem of gender and flesh is simultaneously figured as a problem of life itself. The piece opens with a gruesome description of how these genital injuries occur, which ends: “Some guys said they’d rather be dead.” And when asked in a National Public Radio interview by host Terry Gross, “at the risk of asking the obvious,” why he describes these kinds of genital injuries as “the most disturbing,” Wood pointed to that fleshy limit of life worth living: “I am reflecting what soldiers say. . . . On patrol in Afghanistan that’s the thing that they worry about the most, is losing their manhood. The army sent a team of doctors to Afghanistan . . . to talk to soldiers about these kinds of weapons, IEDs, and the kinds of injuries, and one of the things they reported back is that soldiers and marines are signing do-not-resuscitate pacts in the thought that if they lose their genitals, they don’t want to live” (Wood and Gross 2011).

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The “team of doctors” Wood refers to is the army’s Dismounted Complex Blast Injury Task Force sent to investigate blast injuries sustained on foot patrols, which were increasingly common in Afghanistan.11 The task force report refers to do-not-resuscitate pacts only in its introduction, in which it explains the need for the report. It also specifies that its evidence for these pacts is only anecdotal (Dismounted Complex Blast Injury Task Force 2011, 1). At a press briefing, the task force clarified that it had no other evidence of anyone actually entering into such death pacts, nor did it imagine that medics or corpsmen ever would (Dao 2011). All the same, the task force chair, Brig. Gen. Joseph Caravalho Jr., said he found the rumors not only “concerning,” but entirely “plausible” (Dao 2011).12 Rather than gasp at the “obvious” meaning of male soldiers’ genital injuries, I want to trace how the worth of life gets woven into the sexual anatomy of a soldier in such a way that liberal modes of recognition can read such symbolically and politically vested bodies as “human wreckage,” as lives that might be logically treated as better off dead. Thinking of Jake, for example, we might ask how soldiers’ bodies are configured such that grateful strangers can reasonably request from them stories about what exactly has happened to their flesh and why, in this context, it is taken as reasonable for Jake to reply with a joke about the physical margin that separated his currently intact genitals from the possibility of castration. I suggest that the correspondence between soldiers’ genitals, masculinity, and life itself is not a straightforward equivalence and that the remaking of life under way at Walter Reed is both sensitive to, and not the same as, that common sense. Tracing it ethnographically entails an extension of gender, sexuality, and life worth living through and across the contours of multiple forms of flesh as they are configured in and for conjugal couplehood. Consequently, my ethnographic attention to “manhood” is not an attention to the condition of a social body in itself, but to intimate attachments and regimes of touch through which properly gendered life and self-sufficient personhood are made and on which they are seen to depend in the case of American soldiers.

H E T E R O N AT I O N A L AT TA C H M E N T S A N D T H E S E C U R I N G O F L I F E

In the rehabilitative context of Walter Reed, the social skins of injured soldiers are being carefully calibrated to sustain life: thick enough to ward off infection and not require others’ constant care, but not so thick, as it sometimes threatens to be in military life, as to preclude the configuration of dependencies that constitute appropriately intimate attachments: a properly rehabilitated soldier body should be able to live alone, so that he can find love and won’t have to. Though solitary injured soldiers involved in feats of athleticism can index heroic self-sufficiency (Linker 2010; Serlin 2006, 173–75)—a military subgenre of the “supercrip”—in the absence of such ostentatious vitality and amid increasing concern about unprecedented rates of soldier suicide (seen as a problem of risk and withdrawal), the solitary body of the injured soldier suggests a comorbidity

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of social and biological death against which conjugal couplehood is figured as a bulwark.13 As the injured soldier’s body may become haunted by death when figured alone, bereft of intimate attachments, so the future life of an injured soldier is figured very precisely through heteronationally reproductive domestic ones.14 Such heteronationally reproductive forms of domesticity are not only discursive artifacts. Injured soldiers willfully sought to arrange themselves in this way, to stabilize and forge their lives to come through the “thinnest embrace of the conjugal couple” (Povinelli 2006, 46), even as doing so presented considerable hazards. Peter had joined the army at seventeen—mostly, he said, because he didn’t want to keep living as his parents’ son—having a curfew, walking the dogs, keeping an eye on his little sister when he’d rather be out with a girl or blowing stuff up in the backyard. When he told me about army life, he figured it as the perfect release from that by describing camaraderie and drunken nights out with his unit in his brief time before deployment, stories that revolved around sex. When I asked him about “the whole patriotism thing,” he said infantry life was really about “the lifestyle, the buddies, the pussy, the adventure.” But it was his parents who stayed with him after he arrived at Walter Reed. In his first weeks out of the hospital, when he shared his Fisher House room with both parents, Peter was overwhelmed by bitter anger. He would sit in the living room, a furious scowl on his face, staring through everyone, responding to nothing. Jake told me he recognized the feeling. “We’ve all been through it,” he said. And for Peter “it” was focused on his parents more than anything else. One night, as Jake and I sat talking on the living-room couch, we heard Peter, his temper long gone, shouting at his parents as he mounted the stairs with an unfamiliar prosthetic leg, vertigo from a blown-out eardrum and incus, and fresh stitches from surgery to set his fractured arm. His parents stood anxiously below. “Don’t treat me like a child!” he yelled. His mother gently pleaded, “But you have a suture, you need to be careful.” He hollered out the apparent absurdity that in Iraq he had dragged himself and his equipment—a total of three hundred pounds—out of harm’s way with only one good arm, and now they think he can’t walk up the stairs. Peter’s vitriolic admonition that he not be treated like a child indexed much more than a temporal line between adulthood and infancy.15 Being treated like a child, even by his parents, meant obviating the masculinizing forms of self-sufficiency and self-sovereignty he had sought and found in the army, a self-sovereignty paradoxically proved in the very same condition of his body that makes it subject to his parents’ presence as they try to keep his flesh safe and clean and intact. Offered out of parental love and well-founded concern, Peter’s parents’ interventions into his physical precarity subject him to unchosen dependencies that cannot sustain the life he feels his body requires. The form of life Peter is feeling for entails, among other things, a deeply and normatively and specifically heterosexualized body, again opposed to life made with his parents. He spends hours on the phone locked in the bathroom, trying to earn back the trust of

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two betrayed girlfriends from back home. He finally reconciles with one, Sharon—a model and high-school senior. In the summer, she agrees to move in to Walter Reed and takes over from Peter’s parents as his NMA. Peter and Sharon fought almost incessantly. She was controlling and jealous to the point of paranoia. Other wives and girlfriends at the Fisher House found her gossipy, even crazy. She burdened Peter’s life with melodrama. Even simple social plans involved elaborate negotiations. And Peter worked hard to keep the relationship going, sometimes by appeasing her and sometimes by egging her on. Out of this, a degree of violence developed. One afternoon, Peter admitted to breaking his prosthetic limb when he threw it at a wall during a fight. When I suggested this was abusive, he responded, “That’s not abuse. Abuse is when you push the thing I’m leaning on out from under me,” which Sharon had done at least once. Doing all he did to keep Sharon appeased enough to stay was about more than not wanting to be around his parents. But it was not so simple as opting for some unfettered independence and freedom of manhood made possible by having a girlfriend, rather than parents, as his most intimate kin. After all, the strictures Sharon placed on Peter, and with which he reckoned to keep her present, were both tighter and more precarious than any rules from his concerned parents. So he could not be radically independent and self-determining with Sharon; but radical independence and self-determination were not really the point. There are always dependencies; it is the character of their distribution that makes the difference. In his earliest days at Walter Reed, the caring touch of his parents threatened to make Peter’s flesh into the body of a child—“helpless” and desexualized. He was reluctant to be done for by them, preferring to do for himself—to climb the stairs alone, to try to keep his own body clean and his stitches dry, even though in doing so he risked damaging his flesh. Adulthood thus emerged as a vital entailment of Peter’s future, masculinized life routed through the sexual capacities of his body. But this manhood is not just about the contours or integrity of his flesh; it is a property of the intimate attachments through which his flesh is conditioned, couplehood over childhood, regardless of whether they make his flesh more or less whole. They are for the better if they make his social skin appropriately thin, even if they make the condition of his life more precarious. In fleshy contact with Sharon, shove and caress alike, Peter’s body becomes more like the kind that can sustain the life he feels is worth so much. When his flesh is exposed or vulnerable to hers, conjugal couplehood is more readily inhabitable. And though their relationship did not last the length of his time at Walter Reed, it lasted as long as it did in no small part because of how it limned that life. After Sharon, Peter found a steadier girlfriend, and when it was time for him to leave, they moved in together in an apartment in Washington, D.C. The intensities of life at Walter Reed—the close quarters and publicity, the precarity so profound it cut right to and through the body itself—strained life-making attachments, and re-formed vital intimacies. Arrangements more ideal than Peter and Sharon’s, attachments

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avowed as true love and formed already into marriages with precedents of domesticity, did not reliably produce dependencies that counted as freely chosen and productive of selfsufficient life. But they still linked life and couplehood through a regime of intimacy that worked through flesh, proximity, and sexualized touch. James and his wife, Erin, first met just months before his deployment, and they both swore it had been love at first sight. By the time James left for Iraq, they were married and Erin was pregnant. She gave birth to a daughter while he was in combat. A few months later, James got blown up by an IED. I met them and their little girl on the day they moved from the Mologne House Hotel into the Fisher House, about nine months after their arrival. The form of James’s body was still unstable. He had had one leg successfully amputated above the knee, and, although the flesh of his remaining leg had healed from the surgeries to repair its broken bones, the new arrangement of bone and nerve at his ankle joint made it impossible for him to walk, hampering his physical therapy, which made his stump swell and become unruly and painful. Eventually, he would have more surgery on his ankle, more rehab, and then have the lower portion of that painful leg amputated as well. Through these shifting contours, his enfleshed life was forged through the heteronormative domestic arrangement of his body and Erin’s body. This is not to say that mere proximity was sufficient to make this attachment matter. Erin’s presence, and their daughter’s, were part of the normative future James was doing his best to make in the present—a life that mattered in relation to this attachment, and vice versa. James relished the role of fiduciary patriarch, partly enabled by insurance payments for his lost limbs. He bought a new car for Erin and a house in the suburbs that they planned to move into once they left Walter Reed. When Erin’s mother got laid off, James’s first response was to call her live-in boyfriend and help make a financial plan. And it mattered, in the present and for that future, that he and Erin were living like a couple; that she would do laundry while he entertained their daughter, zipping around at high speeds in his wheelchair with her in his lap. What anchored the significance of this arrangement and made it productive of heteronormative futurity rather than, say, evidence of sterile generosity was the heterosexual intimacy of James’s attachment to Erin. As for the salient distinction between wives that were like wives and wives that were like roommates, at the heart of the matter was sex. And across the changing contours of James’s body, evidence of James and Erin’s properly intimate contact was not difficult to find. There was kissing and playful grab-ass, and they both talked openly about their ongoing sex life when the subject was broached. One night, as their daughter stood in her crib restless before bed, she grabbed hold of a bottle of self-warming lube that sat on the dresser alongside piles of makeup and video games. Erin snatched it from her hand with some embarrassment, but went on to recount how it was something she and James had wanted to try, though she hadn’t liked it. Later that night, out with other soldiers and girlfriends at the bar nearby, Erin brought it up, and the conversation turned to sex. When James said something about masturbating

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at the Fisher House, Erin got mad. “When were you masturbating?” she demanded, and his unperturbed reply was “I don’t know, the other day.” Erin took offense both at the fact that he was touching his own body in this solitary way, without her touch and without her knowledge, and at the implication that he might not be satisfied with the sex they were having. To this, James responded not with recourse to his own flesh and desire, not to his “manly” sex drive, but to their mutual heteronormative conjugal pleasure: he said the more he masturbated, the better their sex would be for them both, reasoning that he would be able to sustain intercourse without ejaculation for Erin’s presumed pleasure and better know his own desires. In such a moment, his potentially excessively self-sufficient touch becomes part of the proper, securing heterosexualization of his unstable flesh as it is made to fortify his intimate attachment to Erin. But this carnal anchor was not always fixed so fast, and in its absence, the condition and conditioning of the body was seen to have so transformed the nature of touch that freely and mutually chosen dependencies once called love now seemed like proof of unfree obligation, no longer the stuff of properly configured liberal persons. Erin told me that there was a time, just after James became an outpatient, when he wouldn’t get out of bed for days on end, not eating, not getting up to go to the bathroom, and hardly talking at all. Erin took over the basic maintenance of his body as best she could—changing his catheter, keeping his wounds clean—but her touch of his exposed body was changing from an enactment of true love to an obligatory kind of care that was opposed to conjugal couplehood. She said that when she couldn’t take it anymore, when she had reached the limit of her capacity for this obligation to maintain nothing but James’s life, she went to the bathroom, got a cup of water and a toothbrush, and brought them to him. She demanded that he brush his teeth; otherwise, she would stop kissing him. She offered this as an ultimatum, a final choice between a kind of caring contact that might still be tinged with unfree obligation but that at least held the promise of conjugal couplehood, and, on the other hand, a kind of abandonment compelled by obligated and desexualized flesh that therefore had nothing to promise for the future. By Erin’s account, imperiling their sexual contact was a turning point in James’s rehabilitation. It was from this last resort to their intimate attachment, anchored once more in properly conjugal touch, that James reemerged as a viable person. This foundational attachment also brought risks, risks that were not the same as those wagered by Peter and Sharon, whose lives and flesh were not bound by love with the same intensity, not previously and properly made through the domestic arrangements of conjugal couplehood. On separate occasions, without the other present, James and Erin each told me about their reunion at Walter Reed. It was in James’s hospital room, the first time they had seen each other after his injury. In both versions of the story, James is described as in pain and heavily medicated. And in both versions of the story the first thing he wanted to do when he saw Erin was have sex, begging her to close the door and get into the hospital bed with him. It was a common enough story at Walter Reed.

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In his telling, James was proud of his desire; there was a continuity of personhood in it, a kind of self—an enfleshed self bound to Erin—that seemed to have weathered combat well, despite his being blown up by an IED. Not only was his heteronormative sexual desire intact in his body, but Erin was there, at his bedside, close enough to touch. While James’s desire may have been about lust, it was also about being constituted as a sufficient individual, desirous and desiring, through the attachments of the conjugal couple; it was about living on as a husband and a father, and all the material and fleshy dimensions of past and future livelihood that that represented. But in her telling, Erin described confusion, concern, and disgust. When he asked her to get into his hospital bed, she saw the condition of his flesh, the clinical ways it was attached, and was concerned for its precarity; it did not seem to her able to survive sex or sustain intimate attachments. And she was disgusted by the thought of such contact with this unfamiliar arrangement of flesh, which to her did not seem entirely recognizable as the person to whom her life was bound. Though at the time she kept those feelings to herself, she resisted sexual contact, giving instead strained and otherwise obligated kinds of caring touch. Then one night, as we sit around the TV with a group of other injured soldiers and their wives, the conversation turns to the urgency of these soldiers’ medical needs. Erin begins describing James as the inpatient he had been when she arrived at Walter Reed—that time about which their memories and feelings seem to be so separate. As she speaks, James is sitting on the plush wall-to-wall carpet of the living-room floor. He has taken off both of his prostheses and one of his snugly fit liners, which sits on the coffee table. Though not uncommon, this is a posture of both comfort and exposure, a physical arrangement of James’s limbs that acquiesces to injury and to certain queer mobilities (like scooting across the floor) rather than aspiring to normative ones (be they passing with prosthetic limbs or zipping with athletic agility in a lightweight titanium wheelchair). And so it is especially painful when, referring to the large, padded, high-backed wheelchair with a headrest that is sometimes used for soldiers in the earliest days after their arrival at Walter Reed, when they have the least bodily strength or control and require the most physical support, Erin says James had been “just sitting there in his retard chair.” From his position on the floor, James says, “Thanks a lot,” his tone sarcastic but tinged with anger. “Sorry, but seriously . . .,” Erin replies, and gives a ghoulish description of James in his hospital room, overmedicated and drooling. James just turns, silent and hurt and sad and put in his place, and stares down the hall. Thinking of James’s description of himself in that hospital room, of his hopeful heteronormative sexual desire, and of the way that conjugal couplehood seemed to be the only form of intimate attachment through which properly rehabilitated life could be secured at Walter Reed, this moment seemed to expose with particular clarity the vulnerability of life that soldiers and wives forge and navigate in remaking it, those “ties or bonds that compose us” (Butler 2004, 20, 22), and so may be our undoing; the fleshy and intimate attachments that may put lives at loose ends. This is how the intimate attachments of conjugal couplehood matter as they ward off solitude, calibrate the skin, and gesture toward a viable future.

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CONCLUSION

When soldiers are injured in war, their injuries may both amplify and impugn their special reproductivity, searing a question mark into the iconicity of their heteronationally reproductive bodies and rendering them in newly questionable forms. In this body, all sorts of transparent and buttressing tensions secreted within the universalism of late liberal life become rather suddenly visible. In this, the figure of the injured soldier keeps strange company with the worthy and unworthy poor, the juridically incapacitated adult, the companionable animal, and those many proliferating particularities of rights to life and death—from abortion to euthanasia to the death penalty to “wrongful birth.” In the contemporary United States, injured soldiers occasion this “mirage of universality” (Berlant 2002, 144) to writhe and flicker with a particular intensity. They body forth exceptional citizenship and institutionally produced and supported forms of abjection that coincide with a patriotic embrace. Theirs is a habilitation of supermasculinity built on disability and erected in the service of nothing more than a heteronational domestic good life. Neither an ideally flat liberal person nor a necropolitically flattened body edged toward bare life, the figure of the injured soldier is aspirationally normative and unwillingly queer, and these features are folded into the contours of actual injured soldiers’ lives through regimes of intimate touch. Manhood, in its fleshiest sense, becomes the apotheosis of rehabilitation at Walter Reed because it seems to produce liberal persons, persons who must, as a condition of their “self-sufficient” personhood in this historical and political moment, at least have bodies that are properly sexed even if they are not properly limbed and who can be made whole through intimate attachments. Masculinity thus appears in the equation not as a quality of the body but as a quality of the specific and sexualizing orientations, modes of touch, and distributions of dependency that span intimately attached forms of human flesh and render them sufficient for valued, politically legible, heteronormative life. The young male soldier’s limbs, genitals, and supplements—from prosthetic limbs to Viagra—constitute the sufficiency of his personhood in relation to significant others and to gendered material arrangements of domesticity and dependence. Life then can sometimes be made to be about genitals, but never in their mere presence or absence or fleshy condition, and never merely because of their symbolic significance. The worth of a soldier’s life becomes hinged to the form and function of genitals always and only insofar as they are made the fleshy anchor for the attachments that are supposed to both secure the body and delimit the contours of the good life after war. N OT E S

Many thanks to Veena Das and Clara Han for their invaluable comments on an earlier draft of this chapter. I must also thank the participants in the 2011 Gender Studies Research Roundtable at Whitman College and the Intimacies of War workshop at the University of Colorado,

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Boulder, as well as members of the departments of anthropology at the University of Toronto and Rice University, for their thoughts on other iterations of the arguments I make here. 1. The history of this emergence is not as natural as one might assume given the seemingly timeless sacralization of soldiers in the United States today. On the stormy political history of compensation for U.S. veterans, see Frydl 2009 and Skocpol 1995. 2. An elaboration of this form of personhood is far beyond my present scope (see, inter alia, Balibar 2012; Berlant 1997; Brown 1995; Davis 2002a; Povinelli 2011), but I note that I include here personhood that takes shape within the political and social ethics of “care” (Kittay 1999) and “capabilities” (Nussbaum 2007; Sen 1992)—two recent approaches to the liberal problem with and of debility. 3. This perennial concern echoes Foucault’s succinct observation that the modern deployment of sexuality has created an arrangement of life in which “sex is worth dying for” (Foucault [1979] 1990, 156). 4. The most immediately relevant examples are those arising from disability, and abjectedly queer and transgendered forms of life (e.g., Haritaworn, Kuntsman, and Posocco 2013; McRuer 2006a; Puar 2007). 5. Though recently moved from its original location in Washington, D.C., to nearby Bethesda, Maryland, it remains a short drive from the capital, and its name and wartime significance endure. 6. During World War I, these were also racially multiplied (Lawrie 2014). 7. With the claims to same-sex entitlements of normative intimacy that have followed the repeal of Don’t Ask Don’t Tell, it seems we can now add homonormativity (Duggan 2002) and homonationalism (Puar 2007) to heteronationalism here. (See Jennifer Hlad, “Same-Sex Spouse Not Allowed to Join Group at Ft. Bragg,” Stars and Stripes, December 12, 2012; Rachel L. Swarns, “Military Rules Leave Gay Spouses Out in Cold,” New York Times, January 19, 2013, A1.) 8. Interestingly, TBI had been displacing posttraumatic stress disorder (PTSD) on this score. For more on PTSD in the context of Iraq and Afghanistan veterans, see Finley 2011. 9. The remark was made on September 1, 1970, following the (expected) defeat of the McGovern–Hatfield Amendment, which would have set a deadline for the withdrawal of U.S. troops from Vietnam, effectively ending the war. The quotation above was included in the page 1 New York Times story about the amendment the next day (Robert Smith, “Senate Defeats ‘End War’ Move by Vote of 55–39,” New York Times, September 2, 1970). On the occasion of McGovern’s death on October 21, 2012, it was also cited in a number of obituaries and remembrances—from Fox News (Pergram 2012) to Al Jazeera (Rosenberg 2012). That its profoundly ableist meaning has not been acknowledged by the political left that celebrates it speaks to the varied necropolitical organization of disabled bodies and injured soldier bodies, even though the flesh of these different bodies can be isomorphic and even though the shared dimensions of their experiences were, in the very moment of McGovern’s speech, being made the ground of a political alliance instrumental in the eventual passing of the Americans with Disabilities Act (ADA) (see Shapiro 1994). 10. This emphasis on normative genitals and reproductive sex (among still typically straight, male injured soldiers) is more pronounced than during the Vietnam War, which coincided with the public proliferation of diverse sexual practices and emphases on bodily pleasure and alternative social forms. That’s not to suggest that alternative sexual practices were part of Vietnam-era rehabilitation; indeed, there was then a greater lack of institutional attention to injured soldiers’

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social and sexual lives altogether. But due in part to the absence of such institutional attention, some nonnormative social, political, and sexual formations arose in that era that are less possible today. These included the alliance of Vietnam vets and disability activists—something virtually absent from contemporary veteran politics—and a cultural emphasis on modes of sexual pleasure among injured vets that, while not less tied to compulsory heterosexuality, were often less squarely configured within heteronormative logics of domesticity and reproductive futurism. (See, for example, Hal Ashby’s 1978 film Coming Home.) 11. This is distinguished from the Iraq War, when soldiers would more often be blown up while inside vehicles. The report defines a dismounted complex blast injury (DCBI) as “an explosion-induced battle injury (BI) sustained by a warfighter [sic] on foot patrol that produces a specific pattern of wounds. In particular, it involves traumatic amputation of at least one leg, a minimum of severe injury to another extremity, and pelvic, abdominal, or urogenital wounding.” (Dismounted Complex Blast Injury Task Force 2011, i). The report focuses on multiple-limb amputation and genital injury. 12. An AP report, in reporting the words of a navy surgeon, significantly complicates the idea of such a pact: “ ‘It is a conversation . . . that every Marine has with his corpsman, the buddy who is first to treat him if he is wounded by an insurgent’s bomb. The Marine says, “If I lose my manhood, then I don’t want to live through it.” . . . They ask us not to save them if their “junk” gets blown off,’ said [Lt. Richard] Whitehead. . . . ‘Usually, we laugh. We joke with them about it. At the same time, you know that you’re going to treat them anyway’ ” (Torchia 2011). 13. A notable example is images of solitary soldiers used to powerful effect by Washington Post photographer Michelle duCille as part of the paper’s Pulitzer Prize–winning exposé about the plight of injured soldiers at Walter Reed. The Pulitzer citation includes ten stories and accompanying images, as well as two additional slide shows of duCille’s photographs. The most notorious was of Specialist Jeremy Duncan in his mold-infested room, illustrating the overall problem of neglect and its cycle of abandonment and withdrawal. There is also an image of Specialist Josh Calloway sitting alone on the bed of his darkened room, head in hands, conveying his struggle with psychiatric problems and the psychiatric care he had been sent to Walter Reed to receive (www.pulitzer.org/archives/7824). 14. One of the most-discussed images of an injured soldier was the 2006 wedding portrait of twenty-four-year-old marine Ty Ziegel, whose body and face had been severely burned by a car bomb in Iraq in 2004, and his twenty-one-year-old fiancée, Renée. The photo was taken by Nina Berman for the People magazine story “Coming Home: A Love Story” (Kramer and Jerome 2006). It went on to win the World Press Photo award for portraiture and was exhibited in the 2010 biennial at the Whitey Museum. While public interpretations of the photo’s pro- or antiwar implications ranged widely, both interpretations consistently drew on the heteronormative futurity that structured the narrative of the image itself. The couple divorced in 2008, and Ty Ziegel died on December 26, 2012, after collapsing on the ice outside a bar near Peoria, Illinois (Truesdell 2013). Less spectacular images of injured soldiers and their wives, fiancées, or committed girlfriends also circulate widely (e.g. Solider Walks Down Aisle Buoyed by Love, Science [Broadway 2004]; Healing, with New Limbs, Fragile Dreams [Macur 2006]; and Platon’s portrait of Sgt. Tim Johannsen and his wife, Jacquelyne Kay, for the New Yorker’s online “Service” profile (New Yorker, September 29, 2008; www.newyorker.com /online/2008/09/29/slideshow_080929_platon#ixzz2FoAehYIS).

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15. On infantilization and disability more generally, see Kumari Campbell 2008, 152–54; and Thomas 2007, 88.

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23 KEY ACTS Organ Transplantation and Subjectivities in the Public Sphere

Aslıhan Sanal İbrahim would not have a child and prayed God for a son. After long years of waiting, his wife gave birth to a son and they called him İsmail. Yet one day, God asked him to sacrifice his son to him to test his faith. İbrahim was torn and sad. He did not know what to do. Finally one day he decided to take his son high up to a mountain to sacrifice him to the God he loved and believed in. And just as he was about to kill İsmail, God sent a lamb down from the sky so that he could sacrifice the lamb instead of his own son. God, seeing İbrahim’s devotion to his faith, had mercy on him and spared him his only son. And from that day on, to celebrate God’s love for İbrahim, people sacrifice a lamb once a year and bond with God through İbrahim’s story. ABRAHAM’S STORY AS TOLD IN ORAL TURKISH TRADITIONS TO ADDRESS THE ORIGINS OF SACRIFICE AND THE FESTIVAL OF SACRIFICE

Turkish transplant practices—founded upon the idea of public organ donation (organ bağıșı), a procedure akin to the central mechanism of sacrificial donation (kurban bağıșı) of the Abrahamic ritual sacrifice—were launched in 1975 in Ankara during the years of terror and violence in the streets. Twenty years later, the practice had expanded to some fourteen cities but still remained modest in size. Lack of technical and pharmaceutical infrastructures, political disputes among transplant physicians, political instability in the country, and social inequalities were some of the reasons for the slow expansion of the practice. All these issues affected the public trust needed for efficient transplant practices, since transplant practices were not a closed or “endogamic practice”1 producing the cure within the boundaries of the biotechnological and biomedical sphere, but were instead one with great need of public support and openness to new ideas of kinship. Only with the public embrace of transplant technology could organs be harvested and patients be treated. The head of a pioneering transplant unit even believed the power of religion and the media to be on an equal footing with that of surgery to establish and maintain a successful transplant practice.

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By the end of the millennium, transplant physicians were still arguing over how to encourage public support for organ donations. Donations from deceased donors were still very low (10%–25% of annual transplants), while the kidney market was growing on the outskirts of a high-tech practice that used to be praised for its idealist physicians. The transplant community believed that increasing the number of transplants from deceased donors would be a countermeasure against organ sale and the commodification of the living body, yet the community failed in most cases because family members were hesitant to donate their deceased loved ones’ bodies for the benefit of transplant medicine. Extending its mistrust to public services and authorities, the Turkish public has learned to mistrust its physicians. Yet in 1998 there was a turn of events in favor of public donations. A young woman who had first killed her husband and then shot herself was found almost dead at the Istanbul airport. At the hospital she was diagnosed with brain death, and her family gave consent to the donation of her organs. What made this consent case so different and historic was that after physicians, together with religious authorities and the media, invented a legend out of this suicide tragedy, public donations for transplant medicine increased multifold for the first time in transplant history. In this chapter, I will discuss the place of this event in the public sphere in a country where the utilization of the dead body for medical ends has been a challenge; I will talk about how physicians deployed individual dramas as keys in activating collectively affirmed norms and ideas of personhood in inventing transcendental moments in favor of technological progress. Following on Victor Turner’s ([1961] 1981) ideas of the ritual process and symbolic action, I will try to explore how transplants operate though cultural mechanisms in the public domain, allowing a victim of suicide to be deployed for transplants in a heroic way.

A S U I C I D E V I C T I M A N D H E R L I F E - S AV I N G O R G A N S

After the establishment of the Turkish Republic in 1923, the country’s medical infrastructure was established as a modern public service with reputable medical schools—some newly founded, and some taken over from the Ottoman legacy. Among the latter was Istanbul University, where this suicide transplantation took place. Until the end of the Cold War in 1989, public medical services remained reputable, especially if the hospital was attached to a medical school. Also for this reason, transplants were conducted in public hospitals only, and transplant physicians were known for their idealism in their efforts to help patients and engage the public to ask for donations despite political instability, poverty, and social unrest. In the 1990s Turkish medicine began changing with the breeze of Turgut Özal’s neoliberal policies. The end of the Cold War began affecting people’s everyday engagement with public services slowly; in time, private television channels were permitted, just like private hospitals, schools, and universities. Throughout the 1990s there was reasonable economic growth in the country owing to these changes. Nevertheless, the eastern regions of the country suffered from political unrest

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among Kurds and the Turkish military, unrest that had begun taking a toll on Istanbul, which already had a population of fourteen million by the mid-1980s. Many people began immigrating to the big city with hopes of a better future. In public hospitals such as the reputable Istanbul University Hospital, physicians were attending more and more to poorer patients coming from the newly emerging suburbs of Istanbul, because the physicians’ everyday lives were preconditioned by the big metropolis’s changing population and its immediate material and emotional needs. Maybe for this reason, like their colleagues in other fields of medicine, transplant surgeons tried to maintain stable practices by balancing their professional vigor with the dramas of Istanbul’s inhabitants. The invention of the suicide drama was such an effort—almost an iconic one. In the fall of 1997, a young woman named Ebru Esler committed suicide after killing her husband. He had just come back from his military service. When the police arrived at the scene, he was already dead, but she was found still breathing. After six hours of struggle to keep her alive in a nearby hospital, at midnight the doctors had to tell her parents that they were unable to save her life, that she was brain-dead (Taşdemir and Genç 1997). Her mother gave consent for organ donation, and the body was transported to Istanbul University Hospital, where it was delivered to the transplant unit for organ harvesting. Moved by the circumstances and history of the event, transplant surgeons believed this to be an opportunity to transform the image of transplants in the public sphere. The next day, the Turkish public awoke to a media campaign announcing the increasing number of dialysis patients throughout the nation—some twenty thousand at that time—and decrying the suffering they endured. In interviews, doctors spoke about the long waiting lists for organs and the virtues of organ donation. The minister of health declared the woman, a victim of suicide, a heroine: in spite of having killed her husband, she had saved many people’s lives. With the story becoming headlines in the press, doctors called on everyone to fill out organ-donation cards as a legacy to their loved ones (Altaylı 1997). The media campaign was provocative; it mobilized hundreds of people, increasing the number of signed organ-donation cards fourfold.2 The media took up the case and turned it into a legend.3 In a departure from the media’s prior tendency always to bring up the “organ mafia” in every transplantation story, this time the reporting was supportive, and transplant physicians publicly expressed their gratitude (Coşkun 1997). In the days and months that followed, the media started focusing on the lives and stories of the patients who had been saved by her organs. Her heart found a place in a man in Istanbul, her liver was flown to Izmir to another man, and one of her kidneys was given to a mother in Istanbul (Coşkun 1997). A couple of months later, the patient who had received her transplanted liver met with four other patients who had all received organs from cadavers donated after her suicide. They met at a hospital in Izmir and thanked the donors in prayers. “May those who have given us life rest in peace, in light [nur içinde yatsınlar],” they said. “We are grateful to their families” (Coşkun 1997). The suicide drama unfolded ever so intensely in the years to come. First, six months later, one of Ebru Esler’s friends was killed in a traffic accident in which the driver without

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a license was driving a truck on a jammed highway in Istanbul. When she was delivered to the hospital, she, too, was diagnosed as brain-dead. Her parents recalled their daughter’s testimony: “If anything is ever to happen to me, please donate my organs like . . . hers [Esler’s].” She had even told her mother of a recent dream in which she was calling her to join her. Reading this dream as a metaphysical sign from the beyond, a newspaper headline reported the donation story by underlining the dream’s deeper message: “She Knew She Would Die” (Gökmenoğlu 1998b). Then, another woman who committed suicide left a note behind asking her mother not to donate her organs, to let them rot with her in her grave inside her own body. Her resistance actually was a sign telling not only how commonplace it had become to expect the deployment of the human body for transplants but also how commonplace it had become that people committed suicide: it happened in Istanbul as it happened in the eastern parts of Turkey; most of its victims were women, but also men who were desperate in the middle of an economic crisis by the beginning of 2000s. The late 1990s were a time when female suicides were much debated in the public sphere. A study had shown that Turkey ranked second highest in female suicides after China. This finding stirred much public debate, mobilizing several sociologists, feminists, and activists to investigate the causes of this unusual ratio between female and male suicides. In a more or less feudally ruled poor region, honor killings were a social control mechanism used to prevent young women from going against their families’ wishes, and for several of these women suicide had become a way out. While the modernization project entailed ideas about citizenship and living a fulfilled communal life secured by the state, honor killings were dark violations of the ideals of happiness secured by the social contract. The donation of the suicide body for transplant medicine happened in parallel with such public awareness of female suicides and mingled with debates that cast female suicides as an unfortunate outcome of political and social instability—a clash of traditions and modernity by the end of the twentieth century. It would be the state’s responsibility to restore young women’s lives. It is not hard to see, then, that transplant medicine’s deployment of suicides, even if unrelated to the circumstances in the east, did however operate on the same political discourse invented by the state to save, restore, and honor the vulnerable female suicide.4 Besides, historically the definitions of the body, of life, and of death in medicine reflected the widely accepted cultural norms of purity and personhood determined by religious ideas, which kept persons and bodies pure and safe for centuries. “Normal bodies” of “full persons” could not be used for medicine but could only benefit from it. As such, this use of the bodies of the vulnerable to restore them into full personhood was not taking place for the first time in Turkish medical history. Physicians had run their practices knowing that they could not utilize the dead body for medical ends in anatomy or in orthopedic surgery unless the donor bodies belonged to marginalized people or groups such as the abandoned patients at a mental hospital. Transplant’s utilization of the suicide operated through a similar discourse that transformed such marginalized nonpersons

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into “laborious bodies” to honor them. In a major transplant unit, in the early 2000s, suicides would constitute half of the cadaveric donor pool even though this meant few bodies since there were so few cadaveric transplants conducted (Sanal 2011). In this sense, the suicide act and its donation to the social body not only revealed how subjectivities have long been construed via personhood norms, but also continued construing such identities in modernity. It took place right at the heart of culture, where transformation could take place through cultural processes and linguistic tools such as myths, dramas, and rites of passage. Similarly, biomedical subjectivities are construed within culture, where language protects and gives meaning to life. In principle, language, operating through symbols, not only evokes but also construes meaningful continuities, reproducing the body, personhood, and subjectivities in the public sphere.

BURIED SYMBOL

A symbol is like a layered container of coded meanings. Beneath the surface of the wording of organ donation lies buried a dominant symbol, sacrifice, celebrated through the ritual of animal sacrifice during the festivities of Kurban bayramı (Eid al-Adha in Arabic, also known as the Feast of the Sacrifice in English). Thus semantically, organ donation signifies sacrificial donation (kurban bağıșı), since both words are rooted in the verb bağıș (“donation”), which is an act conducted so that one is forgiven (bağıșlanma). Moreover, bağıș means a donation for salvation, for forgiveness—a concept with an undertone implying charity and exchange to restore communication with the divine. Originally the word bağıș referred to salvation through sacrifice; for example, kurban bağıșı is the practice of offering an animal sacrifice following the model or mythic charter of the Qur’anic story of the sacrifice of Ismail by Ibrahim (or of Isaac by Abraham) mentioned in the opening. These semantic references are deeply rooted in the religious references of collective life. Bağıș also means a charitable gift, less attached to the meaning entailed by salvation. Yet organ bağıșı (organ donation) echoes the more traditional kurban bağıșı (sacrificial offering), a sacrificial ritual in which the animal sacrifice, in parts and pieces, is drawn into a liminal intermediary world to open a connection to the world of the dead. During this liminal phase of communication, the deceased is remembered in good memories. Thus transplant practices’ central expression—organ donation—is coded under the meaning of the dominant symbol of ritual sacrifice because of an essential semantic link between the Turkish term for organ donation, organ bağıșı, and the term for sacrificial donation, kurban bağıșı. The ritual sacrifice’s magneticism as a religious form is evident in Muslim societies. It allows salvation; it restores memory; it brings the living and the dead together in rituals and festivities; it addresses uncanny dreams; it allows the living to ease the worries of the dead; it is a metaphoric shelter upon which vow papers for good wishes are folded, tagged, and decorated with wishful illustrations as it opens dimensions otherwise sealed. The branches of sacrifice reach out to all to bring together the living and the dead. The processes that

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seemed to lead to the making of the suicide-harvesting act resembled the central place “ritual sacrifice” occupied in collective life. For example, with an animal sacrifice, with the exposure of inner organs and their charitable donation to the poor, a connection with the world of the dead reveals itself—to restore memory, to forgive and be forgiven. Another relevant semantic link is that between suicide and sacrifice. Intihar means “self-sacrifice” in Arabic, with roots in the word “nahr” (“sacrifice”), a meaning actually lost in its translation into Turkish. In the past, instead of intihar, one used to use the wording “kendini katletmek,” meaning “to kill (or slaughter) oneself.” With the modernization of Turkish in the Tanzimât reform era (1839–76), the “killing oneself” meaning of katletmek was replaced with “self-sacrifice,” also indicating the changing place of individual destinies as a consequence of modernization and technological progress, while implying the significance of personal sacrifices for the collective well-being. Both organ donation (organ bağıșı) and suicide (intihar) thus have their semantic roots in “sacrifice,” and its ritualistic and symbolic place in the everyday life of a Muslim. In anthropological theory, symbols are seen as potent forms representing collective thought and action. In Forest of Symbols ([1967] 1981), Victor Turner argues that “symbols instigate social action”—that symbols can encourage people to act in certain ways for collective well-being. Turner illustrates symbols nearly as phylogenic trees growing up toward collective life, covering the landscape of the symbolic registra; their branches grow up with the impulse of social life while their roots simultaneously reach deep down into the individual psyche. And in this way the presence of symbols influences different domains of collective life, and keeps encouraging social action in particular ways. Turner’s metaphoric universe provides us with a glimpse of cultural processes with which technology transforms subjectivities: Turner situates the symbol’s logical axis between two poles, which he calls “the ideological/technological pole” and “the sensory pole.” The significata point from the ideological pole, which he locates outside the human body, toward the sensory pole, which he locates within the human psyche, “striking deeper and deeper roots in the unconscious” (Turner [1967] 1981, 33). To Turner, whatever happens outside the human body has a deep effect on the individual psyche because social action finds itself a potent symbol to carve a place from which the particular act operates “harmoniously” between the external world and one’s inner sense of being. Like Emile Durkheim, who was invested in understanding the role of religion in what he termed “collective consciousness,” Turner is fascinated by the problem of why many social norms and imperatives were felt to be at the same time “obligatory” and “desirable” in collective life: “Ritual . . . is precisely a mechanism that periodically converts the obligatory into the desirable. The basic unit of ritual, the dominant symbol, encapsulates the major properties of the total ritual process which brings about this transmutation.” Through the ritual form, Turner continues, “norms and values become saturated with emotion while basic emotions become ennobled through contact with social values. The irksomeness of moral constraint is transformed into ‘love of virtue,’ and a process is born that moves obligation from the outskirts of social life towards the inner self” (30).

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“Obligation” dominated the anthropological discourse on transplants as well. In the United States, transplant discourse had adopted the phrase gift of life early on.5 When Renée Fox and Judith Swazey (1992), who pioneered fieldwork among transplant patients, wanted to understand what kind of a gift the organ was, they turned to Marcel Mauss’s ([1924] 1954) essay The Gift, in which Mauss argued that “gift exchange” served to reaffirm social bonds and interpersonal relationships. Giving and receiving not only reinforced the strength of relationships among groups, but inevitably tied the exchanging parties to the spirit of the exchanged objects; a sense of obligation to reciprocate, which was usually beyond mere equivalence of value, governed the relationship between the recipient and the donor.6 Fox and Swazey termed this as the “tyranny of the gift” (40) within the transplant discourse to refer to the obligation to reciprocate, especially if the organ donor was a family member. While in Turkey bağıș (“charitable gift”) dominated the discourse of living related transplants, organ harvesting from brain-dead donors entailed other kinds of tensions related to the place of the dead body and the meaning of gift. Not only were physicians reluctant to approach families for organ harvesting when they observed brain death, but families were also reluctant to donate organs of their loved ones whose bodies now in death belonged to God: bodies of the deceased could no longer be part of the economic system of the living. To accommodate those social values, which reminded people of who they were, the transplantation law was initially drafted in such a way that it did not oblige physicians to report a brain death when they observed one. Organ donation and organ harvesting, however, invoked social values that were hard to handle both for physicians and for patients. Yet in time, because of the idealism invested in the progress of transplant medicine, and with delicate discursive moves, what used to be an obligation was felt desirable, and what used to be a constraint was welcomed as a virtuous social act— topographically, departing from the public sphere and moving toward a soothing place in people’s hearts. Sacrifice was operating between the two polarized states of the act of organ donation: the technological pole representing political ideological life, and the sensory pole representing how people were affected by it, how they made sense of it, how they internalized it. As the semantic link between donation, suicide, and sacrifice, bağıș seemed to reveal new meanings about the grammar of transplantation practices. Likewise, the suicide tragedy and its restoration into an act of kindness revealed symbolic processes of sacrifice and their newly attained meanings for subjectivities.

P R O C E S S E S O F T R A N S F O R M AT I V E S Y M B O L I C A C T I O N IN THE PUBLIC SPHERE I . F O R M AT I O N O F T H E E X T E R N A L T E C H N O L O G I C A L P O L E

The first successful transplant in Turkey was a kidney transplant from a living-relative donor conducted in 1975 by Dr. Mehmed Haberal. In 1978 Hacettepe physicians successfully transplanted a cadaveric kidney provided by the Eurotransplant organ-allocation

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network. Despite the success of that operation, physicians believed that Turkey was not yet ready to integrate local brain-dead bodies into its technological transformation. The insufficient infrastructure, from dialysis machines to respirators, was a pending problem, as was a lack of regulations along with the aura of political terror vibrating from the streets to households. What followed this early history of 1970s transplants was a military putsch in 1980 and a new political life in its aftermath. Throughout the 1980s, the practice was kept at a low profile, partly due to the stagnant nature of political life in the postputsch era, and partly due to lack of technical infrastructure for transplants. For these reason patients were encouraged to go to the United Kingdom when they needed transplants. In the meantime, physicians kept thinking of obtaining brain-dead donors locally; they even received kidneys from Germany and other European countries with the help of Eurotransplant. In Ankara, after conducting pioneering transplant operations and proposing the transplant law to the Turkish Grand National Assembly in 1979, Haberal had managed to establish a small practice, which he would later on move to Bașkent University Hospital. By the end of the calm 1980s, the Berlin Wall fell, bringing a feeling of openness and flexibility to transplants’ mobile nature. By the mid-1990s, there was stunning growth in the health care sector. Private universities, foundations, and transplant societies were slowly established, and surgeons would in time become more free to make decisions in favor of transplant infrastructure and legislation. By then, Haberal had already established Bașkent University and its medical school; with this move he had become more free to run his own transplant unit and dialysis centers. Around the same time, other transplant units began emerging in Izmir, Antalya, Bursa, and other big cities. At Istanbul University Medical School, Dr. Uluğ Eldegez, in an effort to improve transplants from cadaveric donors, had established a unit dedicated to transplants from brain-dead donors only. With it, he had also established an NGO that would run the organ-share database and regionally coordinate physicians in Istanbul, Izmir, and other western cities. This was how Eldegez and Haberal had become rivals in authority over transplants. Eldegez’s idealism lay in his courage to challenge the place of the dead body in medicine. He wanted to deploy mainly brain-dead donors for transplants instead of risking the lives of living donors. It was a very disputed realm in the 1990s as he started his own unit, and it would become the central issue of transplant politics, fragmenting biopolitical agendas over the next decade. Beyond this specific dispute, heads of transplant units had differences of opinion as to how to obtain “cadaveric donors” for transplants, how to improve transplants through the “collective consent” in the public sphere—in short, how to evoke the “love of virtue” for a technological practice in a culture deeply preconditioned by taboos surrounding death and the dead body. When in 1998 the suicide organ harvest came about, it was under the wind of such biopolitical fragmentation and tension.7 Death was a difficult domain to utilize for transplants. In 1979, Haberal had prepared the transplant law and made the criteria for brain-death diagnosis very stringent (with the presence and confirmation of four experts at the same time), keeping Muslim people’s sensibilities in mind. He did not want to give the public the feeling that transplant

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physicians were scavengers, nor did he want to force physicians into a diagnosis they were not confident in making. In search of a legal inspiration that would not challenge Turkish sensibilities, Haberal turned to the regulations in the United States. It was “possible” to transplant organs from loved ones—people who were biologically unrelated but emotionally close. In order to secure a stable donor pool for transplantation, he introduced the emotional attachment as a new category to the transplant kinship regulations in the 1980s. This, however, would in the following years become the gray zone in which organ trafficking would flourish. In public hospitals patients would bring donors along, claiming they were emotionally attached. When the consent forms were signed, physicians would conduct operations. Beyond organ trafficking, the practice of transplants in public hospitals was flourishing upon the living organ donor, and it did not even need any justification. Physicians seemed to agree that transplants from living relatives had higher survival rates; because of low trauma, organs would endure. But independent of this observation, doctors had to establish their practices mainly based on living donors defined by law under three types of relatedness. Transplants lacked the non-heart-beating brain-dead donor, as anatomy had lacked the cadaver donations for dissection. The technological pole of transplants from suicide donors was preconditioned by the tension between the lack of public donations and the emergence of organ trafficking under inequalities where suicide was seen as one of the growing wounds upon modernity. Transplant’s brain-dead organ donor was an object, which first had to materialize in translations, then attain meanings, and then be evocative enough to reach to individual lives to move people to donate their bodies for medicine. Inventing a donor pool of “victims of suicide” that resembled anatomy’s “homeless cadavers” could be a way of reaching out to the public to ask for donations for technological progress and healing. Subjectivities were construed this way because nonpersons could be rehabilitated into full personhood through technology, which utilized central cultural mechanisms in the public sphere coded in language.

I I . T H E I N N E R S E N S O RY P O L E

Transplant’s inner life touched exactly upon those values that reminded people “who they were” and “what they would become”—primarily with words loaded with affect. These words touched the realm of the dead and evoked personal relations with God and religious feelings and individual sensibilities—a domain that had proved to be the hardest to transform, a domain where humane sensibilities toward life and death were forged. At the heart of it lay the long-disputed concept of brain death. Brain death is the criterion by which a body is declared dead and is made available for organ harvesting. Its definition was first drafted in 1968 by a committee of experts at Harvard University in an effort to help increase the supply of viable organs for transplants. It was later adopted in many countries as the standard for harvesting organs such as the heart, liver, lungs, kidneys, and pancreas. In Turkey, the legal definition of brain death was

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inspired by the Harvard definition and modeled after international norms. Drafted in 1979 by Haberal, the Regulation on Organ Transplantations and Brain Death laid out the principles for organ and tissue harvesting from humans. The brain-death diagnosis required confirmation of irreversible coma, absence of brain-stem reflexes, and a positive apnea test in a normothermic, nondrugged patient, unanimously confirmed by the opinions of four specialists: a neurologist, a neurosurgeon, an anesthesiologist, and a cardiologist. In the United States, by contrast, only one or two specialists were required, depending on state regulations. In addition, unlike in the United States and most European countries, Turkish doctors were not obliged by law to inform the hospital administration of all cases in which brain death seemed likely. The Turkish doctors understood that the requirements in their country made brain-death diagnoses more difficult to make. The scientific and organizational requirements were giving physicians room to act according to their consciences. In this way, the requirements were reducing the chances of brain-death diagnosis and keeping donors’ relatives away from such a difficult decision. Consequently, it had become difficult to actually identify brain-dead bodies and perform transplants. Already in 1982 the term used to describe brain death had been changed from beyin ölümü (literally, “brain death”) to tıbbi ölüm hali (“medical death condition”) in the hope of emphasizing brain death as “real” death and not “the death of the brain.” In the new translation, the word ölüm (“death”) was absorbed by the power of the word tıbbi (“medical”) and its hegemonic, technical, and institutional connotations. This semantic change, however, did not work: the diagnostic criteria did not become more flexible, nor did the number of brain-dead donors improve. The brain/self analogy of clinical brain death contradicted the body/jann (“life force”) relationship. Jann was everywhere in the body, and partly it also constituted the essence of the self. With the change in wording to the “death of the brain,” it became a “medical condition.” The new words decentralized death and shifted the center of the diagnosis from the brain to the entire body. In the end, jann was not located in one organ but throughout the body: it was in the lungs, the heart, the pulse, and also in the nefes (“breath”). Brain death reduced death to the lack of brain function and not to the passage of jann out of the body. For this reason, the head of the organ coordination center preferred to describe brain death as “son nefesini verdi” (the patient gave away “his last breath”), which meant that the jann had left the body and there was no longer life in it. He avoided the terms brain death and medical death condition. The brain-dead donor was commonly referred to as the kadavra, to mean “cadaveric donor”—a word that was semantically and thus genealogically linked to anatomy’s research object, the kadavra (“cadaver”). With this, transplant physicians were trying to make a leap that would make brain death sound more deathlike in their everyday references. Adopting anatomy’s kadavra to transplant medicine was a leap for this reason, and this leap transported a requirement with it into the practice: the need for a re-formable identity whose body could become a kadavra, whose body could be used in death and whose personhood could improve through such deployment. These would be bodies that could be saved by medicine even in death. The biopolitical fragmentation was evident;

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physicians had reservations about how to challenge the public view of the value of the dead body. The dispute had begun shaping the institutionalization process early on, and was at a peak when the suicide harvest act took place. In a way, this was a modernist move toward a soothing relationship with technology that utilized death for the well-being of the social body through the act of forgiving and being forgiven. With such sensibility, it could invent words and then attribute soothing feelings to them, contextualizing technology, allowing common sense to flow, allowing progress to be seen not just as alien to human senses but as something that one could relate to intimately through salvation.

HOW KEY ACTS CONSTRUCT SUBJECTIVITIES THROUGH RITUAL PROCESSES IN THE PUBLIC SPHERE

In conclusion, I would like to call this kind of powerful act a key act, underlining its significance as a key symbolic process that unites the technological to the sensory to maintain or reset social values. A key act, in this sense, can be seen as a significant act that allows the flow of common sense from the public to the private sphere; sheds light on the emotions by which people live technology and politics; transforms social roles and values for technological progress; and occupies a central place in collective life, activated by its container, the dominant symbol. In the worlds of the dead and the living, which “ritual sacrifice” traditionally bonded, I saw how symbols could play a significant role. With the processes taking place in the container symbol, sacrifice—a powerful key act— was placed into collective life ritualistically to justify means to an end and to restore a tragedy into a bearable drama according with emotions and technologies. At a deeper cultural level, transplants had to take place in a sealed space and in nontime as far as human practices organized “life cycles” for the living and the dead; thus it was not an economic realm of possibilities. The practice resisted liminality. Transplant surgeons themselves had to be convinced of “brain death” as real death, and then define a new “mental space” and a new “ritual time” for this liminal biomedical human activity. Only in this way, it seemed, could common sense rule again between public and private spheres of collective life. Only in this way could transplant technology make a place in people’s hearts, and become sensible. As such, suicide allowed the symbolic process to be complete; it allowed healing both for the mourning family members of the victim of suicide and for transplant patients. Cadaveric transplants from suicides could address all these issues and open a positive relationship between technological progress and individual well-being through the novel ritualistic forms embedded in sacrifice and its symbolic process coded in the wording of bağıș, in forgiving and being forgiven.

N OT E S

1. I use the anthropological term endogamic here to refer to the closed social nature of transplant practices and the organizations of its objects and objectives within its closed

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biomedical circles, which resemble the marital structures of endogamic communities, in which marriage is allowed only within the members of a community. 2. In the previous ten years only 1,212 people had filled out the organ-donation cards at Istanbul University’s transplantation unit. Within three months of the praise-filled broadcasts about Ebru Esler’s gift of life to six strangers, 4,615 people asked for donation forms. See Gökmenoğlu 1997 and 1998a. 3. One of the elements that mobilized the media to carry out this dramatic pro-transplantation media blitz—with the support of the minister of health—was the death of a young newspaper reporter named Nurcan Cakiroglu, who died while waiting to receive a liver transplant. See Gökmenoğlu 1998a. 4. This political take on suicide was much different from what it was in the early days of the republic and the Ottoman rule, during which suicide was a taboo theme, and burial rites could not be conducted for victims of suicide. On the history of suicide in modern Turkey, see Nezahat Arkun in Sanal 2011. 5. See Sharp 2006 and Joralemon 1995 for a brief summary of the economy of bodies and body parts in the United States. The term gift of life was originally used to describe blood donation, and currently it is also applied to gestational surrogacy (Sharp 2006, 17). 6. This “obligation was expressed in myth and imagery, symbolically and collectively. . . . The lasting influence of the objects exchanged was a direct expression of the manner in which sub-groups within segmentary societies were constantly embroiled with and felt themselves in debt to each other” (Mauss 1967, 31). 7. Even during the Ottoman Empire, when Turkish reformers tried to modernize medicine, the issue of the dead body to be used in anatomy was a challenge. Turkish modernization had proved that advances could be made only within boundaries: when the sultan had permitted dissection for the progress of medicine, he had also made sure that Muslim bodies would not be used for this purpose. Later on, after the foundation of the Turkish Republic, medical legislation allowed the deployment of unclaimed bodies of the mentally ill for dissection. Practitioners were inspired by the regulations in the nineteenth-century British Empire for this regulation. For this reason the kadavra’s (cadaver’s) medical genealogy was tainted with stigmatization from early on (see Sanal 2011).

REFERENCES

Altaylı, F. 1997. “Teke Tek: Ebruya Değil Aileye Bakın.” Hürriyet, November 13. http://hurarsiv .hurriyet.com.tr/arsiv/. Arkun, Nezahat. 1963. İntiharın Psikodinamikleri. Istanbul: Baha Matbaası. Coşkun, N. 1997. “Gündem: Can Kardesler.” Hürriyet, December 6. http://hurarsiv.hurriyet .com.tr/arsiv/. Fox, Renne, and Judith P. Swazey. 1992. Spare Parts: Organ Replacement in American Society. New York: Oxford University Press. Gennep, Arnold van. 1960. The Rites of Passage. London: Routledge and Kegan Paul. Gökmenoğlu, Hüseyin Tekin. 1996. İslâm’da Şahsiyet Hakları. Ankara: Türkiye Diyanet Vakfı. ———. 1997. “Gündem: Ebru Olayından Sonra Bağış Arttı.” Hürriyet, November 12. http:// hurarsiv.hurriyet.com.tr/arsiv/.

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———. 1998a. “Gündem: Organ Bağışında Büyük Artış Var.” Hürriyet, January 2. http:// hurarsiv.hurriyet.com.tr/arsiv/. ———. 1998b. “Gündem: Arkadaşın Ortak Kaderi.” Hürriyet, April 4. http://hurarsiv.hurriyet .com.tr/arsiv/. Haberal, Mehmed, G. Moray, H. Karakayali, Ali Bilgin, and N. Bilgin. 1998. “Transplantation Practice and Legislation in Turkey: A Brief History.” Transplantation Proceedings 30: 3027–29. Kahya, E. 1979. “Bizde disseksiyon ne zaman ve nasıl başladı?” Belleten 172:739–59. Keskioğlu, Osman. 1969. Fıkıh Tarihi ve İslâm Hukuku. Ankara: Ayyıldız Matbaası. Mauss, Marcel. (1924) 1990. The Gift: Forms and Functions of Exchange in Archaic Societies. Translated by W. D. Halls. New York: Routledge. Örnek Buken, N. 1996. “Organ Aktarımında Beyin Ölümünün Tıbbi, felsefi ve Teolojik Yönleri.” In Türkiye Klinikleri Tıp Etiği-Hukuku-Tarihi 4:82–84. Sanal, Aslıhan. 2004. “Robin Hood of Techno-Turkey; or, Organ Trafficking the State of Ethical Beings.” Culture, Medicine, and Psychiatry 28 (3): 281–309. ———. 2005. “Flesh Mine, Bones Yours.” PhD diss., MIT. ———. 2011. New Organs within Us: Transplants and the Moral Economy. Durham, NC: Duke University Press. Şehirli, Ümit Süleyman, E. Saka, and C. Sarıkaya. 2004. “Attitudes of Turkish Anatomists toward Cadaver Donation.” Clinical Anatomy 17:677–81. Sever, Aysan, and Rustem Erkan. 2007. The Dark Faces of Poverty, Patriarchal Oppression, and Social Change: Female Suicides in Batman Turkey. Working Papers no. 282, Office of International Development. East Lansing: Michigan State University. Taşdemir, A., and S. Genç. 1997. “Çıldırtan Ayrılık.” Hürriyet, November 7. http://hurarsiv .hurriyet.com.tr/arsiv/. Titiz, İzzet. 2000. Renal Transplantasyona Pratik Yaklaşım. Istanbul: Eczacıbaşı İlaç Pazarlama. Turner, Victor W. (1967) 1981. The Forest of Symbols. Ithaca, NY: Cornell University Press. ———. 1995. The Ritual Process: Structure and Anti-structure. New York: Aldine de Gruyter.

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24 LIFE, DEATH, AND REVERIE Method in a Congolese Medical History

Nancy Rose Hunt

What does it mean to undertake a colonial history of death and life? Medical historians and anthropologists of African clinical and therapeutic spaces have been turning to memory traces and material remains of projects in science, medicine, and development as source material for interrogating relations between Africa’s pasts and present. Some use concrete archives, ruins, or more affective traces like nostalgia, often in relation to a present of relative crisis, in order to better understand the past and present of illness, suffering, medicine, and science. Such work poses questions that are first and foremost methodological: how may we locate and work with diverse kinds of memory and concrete traces? Whether we think of memory as collective or individual, social or autobiographical, whether the focus is life or death, it always involves subjectivity. Memory borders on the imaginary and the affective, even though much intellectual and cognitive content is often included as well. Memory obviously involves an orientation to time: with memory, one often looks backward and remembers. A memory object or commemorative event turns to or contains the past. When historians work with material objects that collect or condense memory and signify or suggest a past, these traces may involve temporal layers. Material remains provide a vantage point for posing questions about the production of life and death in the past, or they may be visceral sites that enable narrative memories or feelings (Hunt 1999). Yet what does this methodology have to do with life and death? My questions revolve around how “spaces of experience” and “horizons of expectation,” to use Reinhart Koselleck’s (2004, 255–76) language, may enable moving historical perception beyond illness,

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suffering, and death alone, and toward life and its production of joy and futures. What do we gain by moving beyond memory and debris as our primary methodological anchors for our ethnographic histories? When should we set aside temporal orientations of event– aftermath, past–consequence in the ways we narrate history, thinking not in terms of the impact of event on subsequent experience and remembering? What do we gain by reading our sources to discern “horizons of expectations,” or reverie—to use the language of Gaston Bachelard (e.g., 1987, 2004)? In a sense, the move is one from death to life. My work in assembling a history of the Equateur region of colonial Congo wrestles with these questions. There is surely some event–aftermath to its temporal structure. A Nervous State (Hunt 2015) begins with event as death and suffering, with the atrocious violence in the Equateur region of King Leopold’s Congo Free State in the 1890s and 1900s. The sources require it to interrogate aftermath—that is, medical and demographic issues that became a colonial obsession in the 1930s, 1940s, and 1950s. Gonorrhea rates were high. Childlessness affected about one-third of women; and the miscarriage rate sometimes exceeded the birthrate. Event–aftermath was present within colonial perceptions at the time; trauma, though not always voiced or acknowledged, was often implicit in the mood of colonial dread permeating the colonial medical archive. In a demographic, reproductive sense, this case is fitting material for an event–aftermath narration that places a premium on death as disaster. If I were to follow the paths of historians and anthropologists working in the fields of trauma studies or studies of social suffering, a portrayal might emerge of Congolese remaining in this equatorial region as forlorn, bereft, and miserable. Some doctors’ reports suggest as much. A few doctors in the 1950s looked to the terribly violent past as the source of conditions of reproductive mishap and disruption. Were they wrong? Quite likely not. Yet should we stop there? Surely not. The same temporal logic—event-aftermath, shock–trauma—was integral to colonial degenerationist medicine at the time. Implicit was the idea that the “shock” of colonialism had had somatic effects, producing a frail race unable to reproduce itself. From a magistrate-novelist to doctors to missionaries, many Europeans broached everyday life with gloom and saw a damaged people marked by stigmata. Is the medical and demographic evidence wrong? Probably not, or surely not entirely anyway. But the way we introduce such material on reproductive disruption into historical narrative matters very much. At my disposal is a remarkable set of some 170 essays written by Congolese in the early 1950s (Boelaert et al. 1995, 1996). They are memory texts about the same violent decades of conquest, rubber, wars, and mutilation of the 1890s and 1900s. This rich memory archive is striking for two reasons. First, several Congolese authors recount how their elder informants objected to speaking about this traumatic past; they did not want to remember. They were refusing memory, in a sense. Were they refusing to locate themselves temporally as the aftermath to death? Perhaps. These accounts also suggest, however, that some memories about this time of horrific violence were full not of death but of life. They told of reverie, of times of music and feasting, of making powerful medicinal war charms that produced victories against the white man, and enabled wonder amid violence

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and cruelty. These memory accounts suggest that all was never broken. Rather, a ludic, therapeutic insurgency kept many alive. As is always the case with history, in many ways everything comes down to one question: how to tell the story. I refuse simple event–aftermath narration. And, I have read the archive for forms of life and living amid violence and death. I deny neither the devastation of early colonial violence nor later medical evidence of infection and childlessness. Mostly, I question what a colonial history of medicine should embrace, while rejecting a narrow history of science and development that privileges the colonial and the Western, and effaces the challenges and openings that the vernacular posed. Our colonial histories should be total and wide. My intervention complicates the story of what happened in this region following excessive early colonial violence. If I sought only to understand the facts produced by the biopolitical apparatus of the state, the result would be an impoverished history echoing the colonial biomedical archive focused on ailing, suffering subjects. It would become embroiled in death, and leave out the life and futures of vernacular healing. I do not want parity, either, however. There were not two parallel therapeutic domains or medical systems. Questions about spaces of experience and horizons of expectation help bring the vernacular zone, often a shadow network, to the fore. It emerges as a festive, sometimes expulsive, sometimes joyful domain, and it produced horizons, reverie, and insurgency. Sometimes the actors from these two worlds crossed in confrontation and conflict. Gynecological intrusions of doctors met the purifying, expulsive dances of healing ritual. But a critical point about the vernacular is how it brings to the fore another aspect of colonial state power, and this side was nervous, securitizing, and urgent. Alive. Koselleck’s (2004) vocabulary suggests that the historian should make tangible or at least apparent both positions—spaces and horizons—as perches of perceptibility held by the subjects who lived at the time of our histories. I marry horizons of expectation with Bachelard’s (1987, 2004) reverie. Daydreaming, poetic wonder, and well-being go together, Bachelard insists (2004; 1994, 8). Daydreaming tells us about imaginary futures and also subjectivities not weighed down either by death, by the present, or by memories of terrible times gone by. For colonial Congo, thinking about the spaces of experience that marked lives is productive. It enables taking stock of boundaries, institutions, enclosures, camp-like places (Agamben 2000), and also spaces of refuge. Some contained, confined, and limited, like a plantation worker’s compound, a mission station, a clinic, or a prison. All were spaces people worked with or worked against as they moved among them while forging lives, making do, and making the best out of possible worlds. Some involved paid labor, some forced labor, some prayer, punishment, schooling, injections, or music. But in the main, colonial spaces of experience in Congo’s Equateur in the 1930s, 1940s, and 1950s had a harsh edge to them: they locked down lives as much as they structured opportunities. Two kinds of spaces emerge as significant because they more obviously opened horizons and reverie. First were nganda spaces of flight, refuge, and respite. These ancient

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places deep in the marshy forest went with the seasonality of fishing and waters rising. People would settle in them for months at a time to fish and collect one forest product: copal. It became a commercial export crop used to make industrial paints and lacquers. People often used nganda time to achieve some edge of independent wealth, apart from customary forced labor in villages or wage labor for palm companies. These same nganda ended up being pathologized by colonial authorities as abnormal, as productive of ill health. The pathologization was surely a reaction to the economic autonomy that these free zones afforded. The colonial regime was losing too many people to nganda. Part of its demographic crisis lay right here. Nganda were an alternative space of experience, and their more gentle rhythms enabled daydreaming and wonder. Congolese kept them alive, including as ritual space, into the 1950s and surely up to today. A second kind of siting opened horizons and reverie. These were therapeutic spaces of experience. These were for healing, for sweeping away calamity, for watching a woman dance as she emerged from months of seclusion in healing and special dancing labors. These spaces blurred with festive zones; there was often a watching, participating, singing public. Sometimes large numbers joined in a healing procession to cleanse a network of villages (Hunt 2015). These places and pathways of spectacle provided refuge, a perch on past and future, and opportunities to mend and repair (but also to expel, as we will see). Both nganda and festive therapeutic places allowed for anticipation, hope, and dreams. In Bachelard’s words, they opened wonder and reverie. These spaces help push historical narration away from event–aftermath, away from locating the living of the 1920s, 1930s, 1940s, and 1950s as under the imprint of early imperial violence. People did not forget. But they also forged rich and spirited lives, partially anchored within spaces that enabled poetic imaginations, pleasure, and daydreaming about evicting the Belgians. I have moved away from ethnographic fieldwork as method. I might have settled for several months in a village or town or two or three, and posed questions about what people remembered from some fifty to sixty years before, as well as stories heard from grandparents and elders. With this method, I could have sought spatial memories and present practices about strong places—whether work spaces, battle sites, clinics, nganda, therapeutic places, or perhaps some graves or massacre locations. Surely there would have been debris, in the sense that I defined debris in A Colonial Lexicon (Hunt 1999)— material bits and remains that are not necessarily part of discursive consciousness or spoken memory, but concrete objects whose arrival into colonial lives may be precisely dated, and whose continued presence in postcolonial practice suggests an ongoing— often ironic, twisted, paradoxical—vantage point or reworking of the past. It is surely still possible to do ethnography in Africa in order to identify debris, as well as past reverie about past futures. In my case, war in Congo steered me away from ethnographic history as method, and toward a deeper engagement with a complexly assembled archive. The archive may be separated into registers or read as streams of derivation, of provenance. I first thought about registers when rethinking iconic imperial violence in Congo

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(Hunt 2008a). This work engaged events in relation to an aftermath. My point was to separate the visual register from the acoustic register of evidence available within the textual archive. Photographs showed maimed, handless human beings. Recycled many times since, in their ubiquity these atrocity photographs work to distort historical perception; researchers and readers see Africans only as violated, suffering subjects. The humanitarian pity that results makes all Congolese seem like mutilated victims. African claims and refusal are omitted. The visual also omits some kinds of violence critical to a reproductive history—namely, rape. By carefully rereading published and unpublished sources for sounds and silences, I detected much speech, the sounds of guns, the silences of fear and huddling, and brief moments of laughter. The latter told about moods of nervousness and contempt, how they bled into sadism and rape. Later, a kind of repetition in the colonial security archive caught my eye. The repetition suggests a recurring kind of daydream or horizon. I call this dream work eviction reverie. First evident in 1915, it recurs through the mid-1950s. Life and death, like healing and harming in most African therapeutics, intermingle in eviction reverie. The collective daydream is about rescue figures arriving, somewhat magically, and helping Congolese end Belgian colonial rule. In 1915, these rescue figures were conjured as Germani or Germans, then at war with Belgians in colonial Kamerun. By 1931, the imagined rescue figures were Americans or African-Americans, and Marcus Garvey–like imagery took over the collective imagination. In all cases, the future was about Belgians being driven out of their colony and replaced by other, kinder foreigners. Sometimes the Belgians are massacred in the process, but regardless, their colonial state comes to an end, opening up a new, brighter future (Hunt 2015). Bachelard is helpful. He points out that reverie is always poetic, always about hypothetical lives, always awake (Bachelard 2004, 8, 14, 150, 159). This daydreaming often entails reckoning with brutality. Yet it begins from a position not of trauma but of poetic wonder, and it always works with and as consciousness. Reverie is not about hallucination, delusion, or trance. It is a kind of aspiration and claim. Fantasy may enter, but reverie is conscious. What work does eviction reverie perform? For the historian, it permits rewriting subaltern subjects from the downtrodden to subjects engaging reality with alert reverie. Ultimately we may say these daydreamers were not wrong: the Belgians did go away, and the relentlessness of their unrest, which fed colonial nervousness at every turn, helped produce this outcome. Eviction reverie also suggests a kind of well-being, a kind of life. It suggests social health, a spry energy, and a feisty vernacular culture of therapeutics and dissent. Reverie always crossed with or emerged from vernacular therapeutics and the latter’s insurgent dimensions. Colonial medical doctors never discussed reverie, just as they never mentioned vernacular therapeutics. Knowledge of the contents of eviction reverie almost always emerges as typed lines within the security archive, within military, police, security, and interrogation reports. Reverie circulated as stories, rumors, wishes, and collective

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daydreams. Police interrogators posed questions to Congolese suspects and the answers became French words on a page. The security archive always announced emergency: what was about to happen, what spelled disaster. There was some looking to the immediate past—who said what when and where—but this rarely exceeded a week, sometimes a month, once in a while a few years back. The security state was looking to the future not with wonder but with nervousness, an urgency to prevent disaster. It was a hurried, panicked modality, rushing toward death, though trying to avert and arrest it. Verging on paranoia, it helps remind us why Georges Balandier (1951) called colonial situations pathological. The interrogation reports are usually truncated. Interrogators sought information about who told whom what about the upcoming raising of an American flag instead of a Belgian flag in 1931 or about the arrival of American rescuers as late as the 1950s (Hunt 2015). No elaborations of these daydreams ever seem to have been sought; their presence was enough to suggest a kind of trouble that needed to be further tracked or was grounds for arrest and relegation. There are two other currents to the archive I have assembled for this history. One is the biopolitical archive with much medical and demographic reporting mixed in. Not only numbers and statistics, it often includes narration and analysis. It moves between quantitative and qualitative registers, between more positivist facts and a more visceral assessment of conditions and being. In this humid, forested ecological zone, where there was untold human disaster in the early twentieth century, including war, mutilation, massacre, rape, and madness, one result (if not also a cause) was European dread, aversion, and revulsion. We can see this racialized mood in Joseph Conrad’s Heart of Darkness (1902). We can read it in E. D. Morel’s and even Roger Casement’s humanitarian reports (Morel 1904, 1907; Síocháin and Sullivan 2003). It also comes through in a 1922 short story about a healer woman who caused a tax rebellion and armed insurrection during the First World War, and who spoke of the Germani as saviors, ancestral figures who would be arriving to rescue everyone from the Belgians. The colonial novelist portrayed her as a degenerate with stigmata (Jadot 1922). This same dread and abjection are there in doctors’ reports, which grow more shrill from 1930 through the late 1940s. This medical language is intermixed with degenerationist and Darwinian language about shock, extinction, and stigmata. It is event– aftermath language; it speaks of traumatism. The space of the present stood in as aftermath. The suggestion was feebleness in relation to an unspecified, precursor time of distressing event: the word shock was common. The language was somatic: it suggested that shock in the past had had bodily effects. The space of relevant experience sometimes became reduced to the marked, medicalized human body. In the eyes of the writing doctor, dehistoricized tremors—the shock of two colliding worlds or “civilizations”—marked the individual body and the collective, ethnic race (Hunt 2015). I call the third archival stream poetic; it was generated by this region’s colonial humanists and their Congolese protégés. Most were missionary priests, but theirs was hardly a

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theological discourse. These Flemish priests imagined themselves as linguists, anthropologists, folklorists, historians, and conservators. This stream resembles a heritagestudies track. These men saw themselves before a world that was in the process of disappearing, and they made it their business to write down all they could, and trained a generation of Africans to write down even more (Hunt 2008b). In this poetic archive, the vernacular therapeutic zone widens as a space of experience that fostered horizons of expectation. It was oriented in relation to a mythical, ancestral past worthy of remembering, reenacting, and keeping alive, and thus also as a present horizon of creativity, mending, generating, and daydreaming. There is one ancestral hero who is worth burying again, collectively, with everyone in several interconnected villages involved, and in a way that expels polluted matter and also renews. These ancestral figures were not quite rescue figures swooping in and declaring a new day. Rather, purging movements of renewal were central to these festive processions, with a sweeping out of toxic debris that might make people ill, and a bringing back to life of signs of these ancestors. The creation of new and better futures was subtly suggested through such explusive processes. And let’s not forget: expulsion was also at the very crux of colonial eviction reverie. I once used debris as a methodological entry point for a colonial history of medicine (Hunt 1999). More recently, I turned to sensory visual and acoustic registers as a way to distinguish alternative interpretations of the colonial past. Both methods still had me largely anchored in a temporal orientation of event–aftermath. More recently, the reverie in my evidence grabbed my attention. It opens a history not only of colonial biomedicine, but also of vernacular therapeutic insurgency. In the process, my attention turned from memory to a diversity of temporal orientations. These vary in relation to the remains left and found within my three archival streams, produced respectively by biopolitical state agents; security technicians of the colonial state; and humanists on the scene. Any space of experience may prove relevant as a historical site productive of illness, duress, health, or creativity. A mining compound, plantation, mission station, clinic, school, township, hospital, prison, or dancing bar—medical historians may have a heyday with any of these. Yet in this history of Congo’s Equateur, two zones of distraction are salient, as is the relationship among the festive, wonder, and well-being. In nganda, Congolese withdrew, hid out, and sometimes achieved a purchase on life, pleasure, wealth, and wonder. In a fluid, festive therapeutic zone, Congolese created and moved in dance performances, acting out storied bits from oral tradition, enacting therapeutic segments, practicing healing ritual, expelling and purging toxic material, and dancing with song and wonder. With reverie. There was memory in these performances—a sedimented, sometimes magical past of sorts. But as lived creations, they had not been reduced to “heritage.” There is a tension between the way the missionary heritage producers wished to keep this zone enchanted and alive, and the way their acts of inscription reified it as “tradition.” It is from the latter inscribed versions that some of my historical interpretations necessarily begin.

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Moving between three currents of the colonial knowledge, I have found links between the nervous state’s urgent interrogating and typing of voices heard and eviction reverie spoken on the one hand, and the way the poetic current opens up bits of the same as therapeutic, rebellious events. These kinds of therapeutic distraction and insurgency freaked out the Belgian colonial state aplenty. The poetic archive helps thicken thin lines from the security archive into a wider understanding of vernacular words and practice. The state had two moods and orientations to time: the urgent, nervous mood of the security state; and a pitying, sentimental side mixed with disgust, that of the biopolitical state. The heritage keepers romanticized as they locked down bits of living, festive therapeutic culture as text. But these Flemish admirers did not miss therapeutic dimensions or idioms about calamity prevention. There was a science to their cataloging and recording methods, even more so to their linguistic work. Like the agencies of the colonial state, they left behind archives (2008b). But their mood was never dread. Rather, these vitalists anticipated ruins as they proceeded with an almost enchanted nostalgia in relation to what they imagined would soon disappear. Thus, I do not diagnose subjectivities from one perspective alone—that of the biopolitical state—but rather through experiential spaces and horizons of expectation that may be glimpsed through diverse archival streams. My exploration of the material and affective presences of the past does not neglect practices of science and development in Africa. But it moves African medical history well beyond biomedicine. It opens vernacular healing as a zone of refuge, of producing joy as life, with Congolese often oriented toward the future through poetic imaginaries and therapeutic practice—notably, dance and spectacle. Thus this history is less interested in traces of a remembered past—even though memories of terrible death and mutilation and the generational naming of those who survived the years of rubber violence receded. Yet by highlighting a present time full of edginess, and faced toward futures with near-apocalyptic events, collective daydreaming comes into view. These inspired struggle, collective healing, and above all a willfulness to disturb, agitate, and refuse. The same processes entangled in life and death produced and reproduced the profound nervousness of the Belgian colonial state, ever perched with security technologies and a sense of urgency.

REFERENCES

Agamben, Giorgio. 2000. “What Is a Camp.” In Means without End: Notes on Politics, translated by Vincenzo Binetti and Cesare Casarino, 37–45. Minneapolis: University of Minnesota Press. Bachelard, Gaston. 1987. On Poetic Imagination and Reverie: Selections from Gaston Bachelard. Rev. ed. Translated by Colette Gaudin. Dallas: Spring Publications. ———. 2004. The Poetics of Reverie: Childhood, Language, and the Cosmos. Translated by Daniel Russell. Boston: Beacon Press.

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Balandier, Georges. 1951. “Le situation coloniale: Approche théorique.” Cahiers internationaux de sociologie 11:44–79. Boelaert, Edmond, Honoré Vinck, and Charles Lonkama. 1995. “Arrivée des blancs sure les bords des rivières équatoriales (Partie I).” Annales Aequatoria 16:13–134. ———. 1996. “Arrivée des blancs sure les bords des rivières équatoriales (Partie II et fin).” Annales Aequatoria 17:7–415. Conrad, Joseph. 1902. “Heart of Darkness.” In Youth: A Narrative, and Two Other Stories, 45–162. London: William Blackwood. Hunt, Nancy Rose. 1999. A Colonial Lexicon: Of Birth Ritual, Medicalization, and Mobility in the Congo. Durham, NC: Duke University Press. ———. 2008a. “An Acoustic Register, Tenacious Images, and Congolese Scenes of Rape and Ruination.” In “Imperial Debris,” special issue, Cultural Anthropology 23 (2): 220–53. ———. 2008b. “Rewriting the Soul in a Flemish Congo.” Past and Present (198): 185–215. ———. 2013. Suturing New Medical Histories of Africa. Carl Schlettwein Lectures 7. Basel: Centre for African Studies. ———. 2015. A Nervous State: Violence, Remedies, and Reverie in Colonial Congo. Durham, NC: Duke University Press. Jadot, Joseph-Marie. 1922. “Marie aux léopards.” In Sous les manguiers en fleurs: Histoires de Bantous, 177–224. Paris: Éditions de Belles Lettres. Koselleck, Reinhart. 2004. “Space of Experience and Horizon of Expectation: Two Historical Categories.” In Futures Past: On the Semantics of Historical Time, translated by Keith Tribe, 255–76. New York: Columbia University Press. Morel, E. D. 1904. King Leopold’s Rule in Africa. London: William Heinemann. ———. 1907. Red Rubber. 4th ed. London: T. Fisher Unwin. Síocháin, Séamas O., and Michael Sullivan, eds. 2003. The Eyes of Another Race: Roger Casement’s Congo Report and 1903 Diary. Dublin: University College Dublin Press.

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SECTION 4

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In her writings on war, grievability, and mourning, Judith Butler (2004, 2009) proposes “precariousness” as a generalized condition of life: the living being requires supports to survive. While Butler defines precariousness as a fact of an embodied existence independent of forms of life, she also seems compelled to continually remember that this existence is embedded within the social. The chapters in this section, however, attend to precariousness from a different vantage point. By attending to the ways in which sociality is struggled for and the price of belonging, these chapters are pointing to the fraught and precarious claims to a “we.” As we saw in the introduction to this book, the assumption of a “we” that has underwritten many of the large claims behind such overarching concepts as those of “biocitizenship” and “biosociality” manages to eclipse the differences in biological conditions and their differential possibilities for forming collective identities. We took the insight from Wittgenstein that the fragility of our forms of life relates to the fragility of our agreements. The chapters here elaborate further that such agreements are not arrived at once and for all since they are not based on any contractual models of belonging but are a testimony both to the ways in which individual lives endure and strive for possibilities of life together, and to the tensions between experience and standing languages that might come in the way of aligning one’s own voice with the collective representations of who or what one is supposed to be. In exploring the fragility of the “we” that arises both in moments of crisis and in the very enduring and striving in everyday life, these chapters also present us with an expanded view of the ethical and the political and their relation, though we appreciate how such questions as who belongs to a collective political project and how violence is endured are not transparent. The political and ethical may emerge in minute actions and one-to-one encounters in which belonging is secured or individuals fall out of collective cohabitation as much as they emerge in dramatic enactments and public actions. In the first chapter of this section, “Life and Concept,” Michael D. Jackson (chapter 25) offers a probing discussion of the tensions between experience and collective representation in quotidian encounters of indigenous life in Australia, in a context of war in Sierra Leone, and in conversations with African migrants in Europe. Turning to both an event within the ordinary and an event of crisis, Jackson elaborates the oscillation between modes of experience that outstrip concepts at hand and modes of experience in which concepts at hand organize and make intelligible lived experience. This tension between collective representation (the concept, the abstract idea) and subjective experience tracks through Jackson’s conversations with African migrants in Europe, as well as with his reader. He sees this tension as analogous to the desire to “consummate oneself” or “cultivate one’s own garden,” a desire in tension with the circumstances that shape our lives and the responsibility to others, “working on one’s father’s farm.” Indeed, Jackson is asking what it is that might be common to all humans; might we locate a dialectic of subjective experience and

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collective thought that is common to the human, prior to finding its expression in a particular cultural form? Yet here we may also see how Jackson’s own route to this dialectic is none other than its engagement in a form of life, and thus one could have easily reversed the question to ask how our understanding of the human is expanded by paying attention to how it comes to be realized in this particular formation. Precariousness marks the text in an interestingly related but different way in the next chapter. In “Never Quite Given,” Hayder Al-Mohammad (chapter 26), too, is concerned with the precariousness of being. Yet he is tracing how a life can slip out or “fall out” of the enmeshments of worldly being, such that the making of the social is not simply a given but rather that which is striven and struggled for. In contexts of turbulence and ongoing violence, such as in the case of everyday life in postinvasion Iraq, we may ask how everyday life is achieved in and around violence, but also at what point it becomes impossible to sustain. Through his encounters with one man, Al-Mohammad provides a very rich description of the subtle ways in which shifting circumstances of security may create more or less accommodating dispositions to others, and the ways in which economic struggles, which may be imperceptibly borne, can become overwhelming and burst into the public. These small shifts in welcoming or rebuffing others, in receiving their eccentricities as an invitation to shared laughter or as nuisance, and the success and failures of the work to economically survive are the medium through which lives are enmeshed in the world and become disentangled from it. In locating an uneasiness of the “not-at-home” at the heart of being-in-the-world, Al-Mohammad thus presents us with the strivings and failures of belonging in small unremarkable acts and in minute shifts in the mood of relationships. “Falling out” is not simply a product of deliberate action but rather emerges from a multiplicity of forces so that the singularity and individuality to which the anthropologist becomes attuned are not achieved through an act of “decision” but in relation to the multiplicity that courses through individual lives. Both Lotte Buch Segal’s chapter, “Mourning, Grief, and the Loss of Politics in Palestine” (chapter 27), and Clara Han’s chapter, “Echoes of a Death” (chapter 28), address the questions of belonging and subjectivation in relation to loss and endurance. Segal insightfully elaborates how intimate experiences of loss brought about by occupation in the Palestinian Occupied Territories cannot be easily voiced within standing languages. Although the maddening quality of loss and suffering is absorbed into the normal through the moassa’ab category of emotion, experiences of loss for both widows and detainees may not be fully contained or encompassed by this category. Segal delicately suggests that there may be an exhaustion to the repetition of political resistance and forms of heroic endurance that the wives of detainees are expected to embody. The need to reiterate the Palestinian national narrative because of the ongoing occupation, however, makes it difficult to acknowledge the effects of detention on detainees’ wives and to acknowledge the doubts that they as well as the widows may experience with the cumulative costs of supporting the Palestinian collective. This “loss of politics,” Segal perceptively suggests, is not simply a disagreement over opinions but rather a doubt in the “we” as a vantage point. Although this may not be

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comforting, it raises a very important question as to how expectations of and for social and political movements may eclipse the costs of enduring a collective narrative. How then might a possibility of life together be forged in the braiding of loss and endurance? In her chapter, Clara Han closely engages the grief of one woman who lost her son to police violence in a military-occupied low-income neighborhood of Santiago, Chile. While literature on the “new violence” in Latin America has focused on the magnitude and pervasiveness of violent death in the region and has argued that such death has become “normalized,” attending to a woman’s grief over the loss of her son invites us to attune to the individuality of death such that death, even if pervasive, does not become “normal.” Here, as with both Al-Mohammad and Segal, we are in the scene of an everyday in which violence is part and parcel of the ordinary and, much as Segal and Jackson relate, the loss of the individual implicates not only physical death, but also the deaths of whole ways of being in the world, of intimacies lost. The cumulative nature of loss endured is registered in women’s bodies and minute actions and shows how the very endurance of loss may erode the capacity to sustain life. Here, a woman’s labors in carefully saving and documenting the legal case of her son for when her granddaughter grows into adulthood is one way to create possibility of a life together for others and in which the uniqueness of being is affirmed. The themes of care and neglect in the experience of mental illness described in Sarah Pinto’s chapter, “Walking Through” (chapter 29), shows the web of intimate relationships in which a life oscillates between belonging to and falling out of a world. The story of a woman’s long-term institutionalization in a psychiatric hospital and her subsequent deinstitutionalization and care in a house bought by her son might be received as a story of abandonment predicated on an upper-middle-class neoliberal ethos in India. However, Pinto’s close attention to how the desires, hopes, and disappointments of intimate kin imprint the illness trajectory reveals how experiences of loss are interwoven with an estranged intimacy that may come with mental illness. Here, the flux of intimacies and the small deaths of relationships are perhaps better conveyed by choreographies of presence and absence of others in a life than a narrative of abandonment. The chapter shows madness not as a border that separates the normal and the pathological but as something that reveals several experiences of thresholds and limits that show not only what can be absorbed in everyday life but also that which cannot find a footing in it. Together, these chapters (along with that of Zoë H. Wool, discussed in the previous section) invite further thought on how vulnerability is gendered and how masculine and feminine regions may voice limits and possibilities differently. For instance, Jackson attunes to the impulse of “consummating oneself in the world,” in which the question of obligation and autonomy are posed in terms of “cultivating one’s own garden or working on the father’s farm”—a story of a son’s struggle to find voice while shadowed by the father. In contrast, Han attunes to a grandmother’s labor to make a world reinhabited by and for others, while Segal attunes to losses unvoiced in the history of Palestinian becoming, remaining unvoiced precisely for that becoming—reinhabiting everyday life and skepticism borne silently in the feminine. While these chapters track tensions between

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experience and collective representations, belonging to and falling out of a world, through experiences of grief, loss, and endurance, and attempts to confront one’s culture with specificity of one’s life, the next set of chapters engages these tensions in relation to the scientific knowledge(s) and technologies of medicine and public health. In “Not Dead Yet,” Faye Ginsburg and Rayna Rapp (chapter 30) offer a subtle discussion of the precarious valuation of living with disability. Activism and cultural labor in the United States and elsewhere have fostered the inclusion of disability within the public sphere in terms of rights, as our discussion of deaf culture and of autism brought out. In a more lethal way, medical technologies such as prenatal genetic testing, embedded in an imaginary of perfection, harbor the potential to cast disability as a life that should not be borne or that can be “appropriately ended”; this is why the issue with disability activism is never only that of identity but must address issues of existence as well. Like Bharadwaj and Inhorn (chapter 2), Ginsburg and Rapp, too, deftly steer through the politics that pit pro-life against pro-choice advocates by attuning instead to the ways in which disability is incorporated into the lives of families and communities. They ask how the experience of living with disability—if understood as a condition common to all—can expand the range of the normal beyond the boundaries of the medical model. The valuation of disability thus hinges upon political debates as to what constitutes normality as much as it does upon apprehending and valuing a fragility that may be common to all. In “Suffering from Evidence,” Carolyn Rouse (chapter 31), too, brings an apprehension of precariousness within the domain of medicine. If medical uncertainty with regard to treatment is foregrounded, then how might the production of racial inequalities in health be rethought? Rouse very subtly reorients the study of race and inequality from one that emphasizes the securing of identities and rights through legislation to one that asks how racial inequalities may be emergent phenomena produced by cultural patterns beyond state interests. Pointing to the failures of the Healthy People 2010 initiative to address racial health disparities at the population level, Rouse suggests shifting perspective from state policies to one-on-one encounters in the clinic, as Canguilhem also was prone to see the experience of disease. Such encounters reveal how physicians draw upon evidence-based medicine to make “rational” decisions regarding care. Yet in the case of African-American sickle cell patients, decision making is based on quasi-scientific behavioral research couched in commonsense ideas of black pathology and irrationality that discount and misrecognize experiential knowledge of living with sickle cell anemia. Rather than draw attention to exclusions produced through deliberate actions, Rouse acutely brings into view how racial health inequalities are emergent to the demand for rational decision making in medical care and to physicians’ and patients’ responses to the very uncertainty over efficacious treatments and interventions for sickle cell anemia. This uncertainty is forgotten as physicians interpret patients according to behavioral research rather than attend to their symptoms. What emerges in physicians’ evaluations of patients is not treatment of illness per se, but the evaluation of patients’ belonging to the project of freedom, of their capacity to be citizens.

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How tensions over experiential knowledge and forms of scientific knowledge map onto the struggles over belonging are also found in Anne M. Lovell’s chapter, “ ‘God Isn’t Finished with This City Yet’” (chapter 32). Epidemiological studies claiming no excess mortality due to suicide from Hurricane Katrina and the Centers for Disease Control’s assessment of excess deaths set in motion a local science of statistics in New Orleans that countered these assessments. The City of New Orleans Department of Health showed a 47 percent increase in deaths per month based on a sampling of daily death notices in the city newspaper. Beyond obituaries, Internet bulletins emerged to memorialize each and every Katrina-related death while also showing the cumulative force of some ones’ deaths in the city. With great originality, Lovell turns to the local science of statistics, and these memorial devices create a counternarrative of the event, extending the event in time and place, and thus questioning and expanding what counted officially as being affected by or dying from Katrina. Vital statistics are then folded into an older impulse to find and reclaim the dead, memorializing the dead who died alone or died not-good deaths, and bringing the dead back into a mutuality of existence with the living. Recall here Wittgenstein’s examples that showed that solving mathematical puzzles and praying are not examples of logic and culture per se; rather, both activities take their form from rules, customs, habits, and feelings of familiarity within a form of life. We can see that Lovell is not drawing a contrast between statistics as science and mourning as culture—but rather showing that the local forms of knowing are integrally connected to the life form. While the statistical wars over Katrina-related deaths showed the political significance of drawing boundaries around the event of Katrina, Bhrigupati Singh’s chapter, “Hunger and Thirst” (chapter 33), asks how an event bursts into publicity and impels action, and what it might mean to retain an interest in forms of scarcity that do not garner such attention and action. In 2002, starvation deaths related to drought in Shahabad, India, burst into publicity, mobilizing humanitarian assistance and catalyzing a host of governmental and nongovernmental initiatives to address endemic scarcity. Yet while public interest waned in a crisis over starvation deaths, anthropological attention reveals the overlapping of different crises as the ordinary itself shifts. Hunger is enmeshed in an emerging crisis in water through a very complex web of relationships. The shifting social valuation of grains in a hierarchy of “coarser” and “finer” tastes gave wheat its status as a “fine” grain while demoting millet to a “coarse”-grain status. Yet wheat crops consume four times as much water as millet. Thus, the social valuation of wheat as a “fine” grain and its consequent expanded production may be depleting the water table, while the demotion of millet may make a resort to millet an experience of crisis, when its consumption was formerly ordinary. Here, politics emerges not in terms of commitment to a transcendent struggle, but rather in the attention to values in everyday life, and Singh demonstrates how rising and waning intensities around hunger, water shortage, and agriculture might be understood through the concept of thresholds of life—a notion he elaborates through his ethnography. With Vincanne Adams’s chapter, “ ‘Tibet on Fire’ ” (chapter 34), we return to the questions of life, experience, and concept that began this section, but we now ask how the

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ordinary can itself become the very site of political and ethical contestation. Since 2009, Tibetans have performed self-immolation in increasing numbers to protest Chinese intrusions into their forms of life. But how should we receive the performance of tragic selfimmolations? In this powerful chapter, Adams explores how logics of enumeration enter into and may even intensify the problem of the escalating self-immolations of Tibetans. First, if these acts gain political significance for human-rights work only through enumeration, then the very forms of evidence making in human rights may be part of the problem of its escalation. Second, in occupied Tibet, the Chinese government consistently tries to make Tibetans complicit in their own oppression by using techniques of enumeration to demonstrate tremendous progress in such indices as decline in mortality while subtly eroding their sense of being ethical beings by attacking everyday practices that make them Tibetan Buddhists in their own eyes. Tibetans’ ways of being ethical emerge in the minutest of actions—such as feeding the fish on a particular ritual occasion—that tie into their cosmology. Adams acutely observes that the Chinese State attacks these actions and gestures, thus making the ordinary become such a contested site. For Tibetans, living ethically is a constant struggle while, ironically, occupation has made a virtuous death possible. Enhancing biological life while making your life as conceived under Buddhism disappear—these techniques almost produce the difficult decisions for self-immolation that are produced not as proper “Buddhist” responses of a generalized kind but as singularities that embody the impossibility of this reality. Through the very space that enumeration and statistics have come to occupy in political discourse, we are asked to shift to a register other than that of the scientific and to let the experience of witnessing respond to acknowledge the ethical possibilities that Tibetans themselves define as being Tibetan while also asking us to apprehend the singularity of a life. These ten chapters together help usher forth a discussion of precarious lives in the tensions among collective representations, individual life trajectories, experience, and aspirations. These chapters show that attention to rhythms of belonging and of falling out of a world—the waxing and waning of life, the potential of sociality to nurture or betray— asks for a more expansive view of politics and ethics with which to confront how we might engage precarity as produced through milieus that are changing rapidly through threats that are both new (globalization, climate change, new forms of warfare) and old (exclusions based on race, colonial occupations, gender discrimination) while also remaining attentive to the enormous efforts made by ordinary people to produce spaces of affirmation, joy, and care through a kind of ordinary realism about life and death.

REFERENCES

Butler, Judith. 2004. Precarious Life: The Powers of Mourning and Violence. London: Verso Press. ———. 2009. Frames of War: When Is Life Grievable? London: Verso Press.

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25 LIFE AND CONCEPT Michael D. Jackson

In charting the “divided and dialectical character” of French philosophy through the twentieth century, Alain Badiou (2012, liii) draws a contrast between Henri Bergson’s “philosophy of vital interiority” and Léon Brunschvicg’s mathematically based “conceptual formalism.” Both philosophers published seminal works—in 1911 and 1912, respectively—initiating radically different intellectual orientations and genealogies: the first focused on life; the second focused on the concept. As Badiou notes, though both orientations “coincide” in the human subject, who is simultaneously a living organism and a creator of concepts, the quarrel between the “existential vitalism” of thinkers like Bergson, Sartre, Merleau-Ponty, Bachelard, and Deleuze and the “conceptual formalism” of thinkers like Brunschvicg, Lévi-Strauss, Althusser, and Lacan is never resolved. The illusion persists “that the concept can transcend the concept” and “thus reach the nonconceptual”—and this remains “one of philosophy’s inalienable features and part of the naïveté that ails it” (Adorno 1973, 9). Similar dilemmas and divisions have pervaded late-twentieth-century cultural anthropology, for while some anthropologists argue that human emotions, thoughts, sensibilities, motivations, and interests are largely shaped by cultural and historical forces, others emphasize the surprising malleability and multiplicity of the human subject, whose potential to adapt to different situations and respond to other human subjects renders it irreducible to the conceptual forms and essences with which it is customarily identified.1 In arguing for the complementarity of these perspectives, I have often invoked Sartre’s “progressive-regressive method,” whose focus is the dynamic relationship between the

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preexisting conditions that circumscribe an individual’s possibilities and the purposeful actions whereby that individual projects himself or herself into the world, making something of what he or she was made (Jackson 1998, 27; Sartre 1968, 150–51). According to this view, concepts are like tools and techniques that lie ready-to-hand; whatever meaning they may have acquired in the minds or at the hands of others, one takes them up and deploys them on one’s own terms, in relation to one’s particular situation or project. Rather than separate concept and existence, we therefore seek “to demonstrate that the concept is a living thing, a creation, a process, an event, and, as such, not divorced from existence” (Badiou 2012, lxi). At the same time, however, it is important to acknowledge the limitations of any tool—material or conceptual—in securing the ends to which it is applied, be this interpreting the world, changing the world, or renegotiating our relationship with the world. In stressing the nonidentity of words and worlds, thought and being, Adorno’s negative dialectics reminds us that concepts never fully cover or contain our life experiences (Adorno 1973, 5, 8). As I will show, Adorno’s critique of identity thinking uncannily echoes Wilfrid Bion’s observation that “the mental domain . . . cannot be contained within the framework of psychoanalytic theory.” “Is this a sign of defective theory?” Bion asks, “or a sign that psychoanalysts do not understand that psychoanalysis cannot be contained permanently within the definitions they use? It would be a valid observation to say that psychoanalysis cannot ‘contain’ the mental domain because it is not a ‘container’ but a ‘probe.’ ” (Bion 1975, 65). Yet we cannot resist reifying our concepts and fetishizing our tools, confusing means and ends, allowing ourselves to become estranged from the life situations that our worldviews were intended to make intelligible, so that the concept appears to possess a life and logic of its own. Mathematically speaking, a concept cannot be divided by life without leaving a remainder, and it is “the memory of this remainder that haunts us” (de Certeau 1984, 14). No matter how sophisticated our concepts become, they fail to do justice to what William James called the “plenum of existence”—the full range of human experience, intransitive and transitive, fixed and fluid, rational and emotional, coherent and wild, real and symbolic. But while concepts are epistemologically flawed, they remain existentially necessary, for like other discursive and practical techniques, they enable us to process experiences that threaten to overwhelm us, and give us consolation that life is intelligible, comprehensible, and controllable. I use the image of the penumbral2 to capture this ambiguity of our experience as it oscillates between what we can and cannot grasp. The penumbral bears comparison with what Jaspers (1997) calls “the Encompassing” (das Umgreifende) or refers to as “border situations” (Grenzsituationen)—situations in which we come up against the limits of language, the limits of our strength, the limits of our knowledge, yet are sometimes thrown open to new ways of understanding our being-in-the-world, new ways of connecting with others (Jaspers 2000, 97). Whether such border situations are quintessentially “religious,” “spiritual,” “historical,” “social,” or “biographical” may be beside the point, for though such terms help us describe the conditions of the possibility of our experience or help us retrospectively explain our experience to ourselves and to others, the meaning

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of all human experience remains ambiguous, containing within it both the seeds of its own comprehensibility and nuances and shadings that go beyond what can be comprehensively thought or said.

M AT T E R S O F L I F E A N D D E AT H

Taking a leaf out of Badiou’s book, let me begin with two concrete events from my fieldwork among the Warlpiri of central Australia and the Kuranko of northeastern Sierra Leone. In the winter of 1990, my wife and I were living in the Warlpiri settlement of Lajamanu in the northern Tanami Desert of central Australia. Our trailer was parked under a ghost gum behind the Wulaign Outstation Resource Centre—a prefabricated, aluminum-sided shed and center of operations for the Central Land Council, under whose aegis Francine and I were doing our fieldwork. Wulaign’s veranda afforded shade, and I would sometimes sit there with older Warlpiri men, clumped together on the concrete as if a single body. One afternoon we were joined by Barnaby Japaljarri, a thickset, middle-aged man with a penchant for pama (“sweet things,” including alcohol), but whose grumpy and taciturn manner suggested complete indifference to our desultory talk of Dreamings and related matters. Suddenly, Japaljarri toppled over. I thought he might be drunk and had passed out. But the other men did not even stop to think. Moving as one, they reached out to him, pressing the palms of their hands against his body and his head. A few minutes passed, and Japaljarri revived. Not a word was said as he sat up, resuming his place among us. What prompted the men to act as they had? If a person loses consciousness, as Japaljarri had, it meant that his life force (pirlirrpa) had momentarily deserted him. To prevent this loss of life, this draining away of the pirlirrpa, one placed one’s hands on the body of the afflicted individual—holding him together, so to speak; containing him. The second event was the invasion of the Kuranko village of Kondembaia by Revolutionary United Front soldiers in 1999. Sporadic gunfire signaled the arrival of the rebels. People were seized at random and assembled under one of the great cotton trees in the center of the village. There, drug-addled rebels used one of the tree’s buttressing roots as a butcher’s block to sever the limbs of their victims. Forty men, women, and children were murdered that day, and three years later survivors would recall the event in a series of disconnected phrases: Yuge bi nala (“Badness has come”) was the first terrified cry. Then, as word spread of what was happening, Ma faga yo (“We are being murdered”), A bi na faga (“They are killing us”), Ma bin na faga (“We are all dead”). And finally, Allah ma ma dembe (“God help us”), Kele na l bama (“The world is coming to an end”). It was as if the event unfolded outside of people’s ability to process it—“an unbearable sequence of sheer happenings” (Arendt 1973, 106). These events are critical events (Das 1995)—matters of life and death. They were experienced limbically, as it were, rather than cerebrally. For as long as the event lasted, one’s experience was neither comprehensible nor narratable.

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If overwhelming emotions such as terror, panic, and bereavement can momentarily obliterate our conceptual awareness, what are we to make of Badiou’s assertion, in an obituary for Gilles Deleuze, that for Deleuze thinking was “a component of life” (Badiou 2012, 339). Is it not empirically more accurate to say that life often confounds, interrupts, disturbs, and outstrips our concepts of what life means? And is it not the case that our concepts are often playing catch-up—which is to say that they are deployed retrospectively in order to make sense of experiences and events that defied reason, confounded our expectations, and called all our assumptions into question? If this is so, then the burning question is not one of dissolving the distinction between life and concept, as Badiou suggests, or even claiming that concepts are implicit in experience, but one of exploring the oscillations in human consciousness between modes of experience that appear to occlude or obliterate conceptual thought on the one hand, and modes of experience that rationalize and reorganize lived experience in ways that make it bearable and intelligible on the other. What concepts, then, might help us elucidate the events described above without diminishing or erasing their immediate impact? Let me begin with an indigenous exegesis. In the Warlpiri view, a person contains, holds, or is filled with life, but this life essence (pirlirrpa) derives from and is sustained by one’s relationship with a greater existential matrix that comprises the eternal and encompassing field of the Dreaming (jukurrpa) as well as the significant others on whom one’s life depends in the here and now—kinsmen, affines, and countrymen. Despite the value placed on rugged individualism, Warlpiri stress the importance of jinamardarni—of looking after or caring for others as well as the land, and the rituals that sustain a vital relationship with the land. The Warlpiri concept of “being held” is directly comparable to the neighboring Pintup, whose concept of kanyininpa, may refer to the possession of physical objects (“I have two spears”), to the protective and nurturing relationship of parent to child (“My mother’s breast milk nourished me”; “My father held me and grew me up”), and to rights over “Dreaming” rituals, songs, and designs. Thus, the significations of kanyininpa “derive from the basic idea of an intimate and active relationship between a ‘holder’ and that which is ‘held,’ as suggested in the primary meaning of physical grasp” (Myers 1986, 146; cf. Myers 1989, 18). The conflation of having rights to use an object without asking and of being held or taken care of by a significant other is also demonstrated by the complementary term wantininpa, which means “leaving” or “losing” something or someone that sustains one’s life (Myers 1986, 146). Although a great cultural and geographical distance separates central Australia and West Africa, Kuranko concepts of being-in-the-world bear an uncanny resemblance to those of the Warlpiri and Pintupi. When Kondembaia was overrun by rebels in 1999, villagers felt utterly defenseless and vulnerable. The cries “A bi na faga” (“They are killing us”) and “Ma bin na faga” (“We

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are all dead”) articulated an individual and collective sense that life itself was over: “Allah ma ma dembe” (“God help us”), “Kele na l bama” (“The world is coming to an end”). But not only did people lose their lives that fateful day; the village itself was pillaged and burned to the ground. This metaphorical fusion of persons and possessions implies a concept of reciprocity that operates at the level of being and of having. What one has objectifies who one is. The Kuranko notion of miran makes this clear. Mirannu (pl.) can refer both to material possessions—particularly those that contain and protect, such as a house, clothing, water vessels, and cooking pots—and to personal attributes that give one a sense of self-possession, presence, and substantiality of being, such as forceful speech, physical skill, and social adroitness. But miran, in both senses of the term— material possession and personal disposition—is never a fixed property or attribute. In practice, a person’s miran may be bolstered by fetishes that symbolically enclose, contain, and protect the vital spaces that define his or her being—body, house, village, chiefdom—in exactly the same way that in a consumer society material possessions bolster and define a person’s sense of well-being, substantiality, and standing. For Kuranko, the notion of a full container is a common metaphor for anyone who is in command of himself and working his utmost to do what is expected of him, to do his duty. But self-possession and morale may be undermined, sapped, or lost. Just as a person’s property can be stolen, a pot broken, and a house fall into disrepair, so a person can lose self-possession and confidence, as when his or her miran is “taken away” by more powerful others (such as autocratic parents, forceful public speakers, and powerful bush spirits) whose voice and power “press down” with great weight, diminishing the miran of those in their presence. Then, it is said that “the container has tipped over and its contents spilled out”—a metaphor for loss of self-control, or for a state of laziness or despair when one has “let oneself go” (nyere bila). In the case under discussion, the superior force and military might of the rebels left people feeling like shattered vessels or ruined houses, their defenses breached, their autonomy lost, the life drained from them. Although I have explored two events in which life itself was at stake, quotidian life is generally not a literal matter of being either alive or dead; rather, it is a struggle to get an edge on those forces that threaten to sap one’s energies, wear one down, and make life unfulfilling, dispiriting, and scarcely worth living. This is reminiscent of those passages in Spinoza’s Ethics where he proposes that life and death are never absolute poles of being and nothingness, but matters of being more or less alive, since every life form “endeavors to persist in its own being” (Spinoza 2002, 283), seeking whatever augments and amplifies its existence while avoiding all that imperils or reduces it. Here, Spinoza’s thought resonates with non-Western thought. Maori posit a dialectical movement between tupu—the unfolding or efflorescence of life—and mate—the fading or withering away of life. This dialectic of tupu and mate is likened to the waxing and waning of the moon, the rise and fall of tides, the lighting and dying of a fire, or a tree that is growing and a tree that has been felled. But whether tupu or mate triumphs depends on human action. Thus, whereas an insult reduces or weakens one’s honor,

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avenging the insult restores it. This dialectic is echoed in the Warlpiri notions of patency (palka) and latency (lawa). Palka means embodied in present time (jalanguju palkalku). Lawa means just the opposite. The words apply equally to the perpetual coming and going in Warlpiri social life and to the flux of things. Anything that has “body” is palka— a rock hole or river with water in it, the trunk of a tree, a person whose belly is full, country where game is plentiful, a person who is present. But if a rock hole is dry, a stomach is empty, tracks are erased, or a person faints, falls asleep, goes away, or dies, then there is lawa, absence. Palka is that which is existent, whether persons or possessions. By contrast, lawa connotes the loss of the persons and things that sustain one’s life. However, just as persons disperse and then gradually come together again (pina yani), so human ritual action can bring the ancestral order back into being, fleshing it out in the painting, song, and mimetic dance of the living. Giving birth to a child, conjuring up the country in song, and dancing the Dreaming into life are all modes of “bringing forth being” (palka jarrimi). And the passage from absence to presence is like the passage from night to day. These ethnographic observations from West Africa, Polynesia, and Aboriginal Australia not only reinforce Spinoza’s view that life and death are relative matters; they direct our attention to the fact that the wherewithal of life is always scarce and must be struggled for. This struggle unfolds in our relations with others, with the gods we worship, and with the scarce resources, both within ourselves and without, on which we draw in sustaining our lives. Existence is never simply a Darwinian struggle for survival, for what is at stake for human beings are existential imperatives like striking a balance between our commitment to others and our duty to ourselves, and transforming the world into which we are thrown into a world we have a hand in making—so that we are actors and not merely acted upon. Life is never simply bare survival, but realizing one’s humanity in relation to others; and death is never physical extinction but the nullification of these relations that sustain one’s life among others. That being is precarious and unstable is obvious from the ontological metaphors with which we typically describe it. Quotidian existence is marked by ups (being high, feeling on top of things) and downs (being blue, snowed under, depressed)—and often compared, in popular thought, to changes in the weather or market oscillations between profit and loss. Allusions are also made to fullness (being full of life) or emptiness (being drained), or the contrast between activity (being on the move, being creative, making something of oneself, going places) and stasis, which is often synonymous with nothingness (being stuck, being trapped, getting nowhere). That one’s sense of well-being is susceptible to constant change is shown by the way that an affectionate glance, a gesture of recognition or concern, the company of close friends, or an unexpected gift can make one’s day, while a cutting remark, a snub, ill health, the loss of a job, or a falling-out with a friend can cast a pall over everything. Although these minutiae of everyday life suggest recurring symbolic motifs—the need to be recognized, healthy, loved, happy, or free; to have security, wealth, an identity, a fulfilling job, a family and friends; and to do well in

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life—it is important to note that being is never an “either/or” thing, but a “more or less” question. Being is always what Jaspers calls “potential being.”

THE SOCIAL LIFE OF CONCEPTS

It is sometimes assumed that concepts are a product of rational contemplation—of pure reason. One deliberately forms a plan of action, then implements it, or one retrospectively reviews one’s experience and discovers an order within it (induction) or brings an order to it (deduction). Rather than preserve the traditional antinomies of concrete/abstract, sensible/intelligible, percept/concept that inform both inductive and deductive methods, I seek to identify the prototypes of these forms of thought in everyday consciousness. It may be the case that we sometimes experience ourselves as disinterested beings to whom life simply happens, or feel that the world impresses itself upon our consciousness, disclosing hitherto invisible or underlying causes, motives, rules, or ordering principles. It may also be the case that we sometimes experience ourselves as viewing our lives from afar, as if our very existence had become an object of contemplation. But neither of these modes of experience necessarily entails scientific methods or philosophical truths. They are simply alternating forms of consciousness, both of which may provide a fleeting and consoling sense that we may comprehend our relationship to the world. They echo a distinction that precedes the development of modern science and is recognized in all human societies—that we are creatures who suffer an existence we have not chosen, fated to exercise patience in the hope that we may in the fullness of time or by the grace of God be indemnified for our pains, and that we are creators of our own lives, responsible for our actions, and capable of knowing and controlling with increasingly higher degrees of certainty the world in which we move. Phenomenology and radical empiricism refuse to ontologize percept and concept, sensibility and intelligibility. These terms are false antinomies. They do not denote real differences between “pure experience” and “explanatory concepts” but convey a sense that our experience is constantly oscillating between a mode in which we act without much conscious thought and another mode in which we consciously think about or reflect upon our actions. That our experience of our being-in-the-world continually and imperceptibly moves between these extremes does not imply that unreflective or habitual action is less significant than actions that are premeditated or reflected upon; it urges us to focus on the interplay between experiences that slip from the mind’s grasp, as it were, resisting language, and experiences that are formed as thoughts we can readily put into words. Phenomenology is not concerned with prereflective or pretheoretical life per se, but with this indeterminate relation, this perpetual tension and slippage, between modes of apprehending reality that we typically characterize in either-or terms as feeling versus thought, percept versus concept, and so on. As such, our focus is on those concepts that retain some sense of what precipitated them in consciousness, even as they anticipate the more reified character they often come to assume.

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It is this focus on the transitive, on the in-between, that has led phenomenologists to focus on poetic imagery, vernacular idioms, proverbial sayings, and mundane metaphors, for in these incipient, immanent, inchoate forms of expression are disclosed the amorphous forms of consciousness as well as the abstract figures of thought we call concepts or ideas. These rudimentary modes of expression are not to be disparaged because they are less “objective” than, or give us less purchase on, the world of “subjectivity”; rather, they are to be explored as offering our best access to the elusive field of subjective experience. Moreover, because human differences are customarily couched in substantive terms, such as ethnicity, religion, and gender, any attempt to write a comparative anthropology of the human must develop methods for apprehending what forms of consciousness may be common to all before they find expression in a particular cultural, conceptual, or concrete form.

T H E D I A L E C T I C O F C O N TA I N E R - C O N TA I N E D

Let me return to the vernacular images of container-contained that emerged from my discussion of Warlpiri and Kuranko conceptions of intersubjective life. Just as a sense of reciprocal exchange—of expressions, gestures, and objects—underlies a child’s earliest experiences of being-in-the-world, so the dialectic of holding and being held—of being a container and being contained—seems to be one of the most ontological primitive ways in which we apprehend our relation to others and our environment. In other words, the connection between Warlpiri and Kuranko concepts is ontogenetic, and the similar ontological metaphors that are found in these very disparate societies disclose something so fundamental about our nature that some might call them preconceptual or protocultural. The model of container-contained was central to the psychoanalytic work of Wilfrid Bion, who postulated that we can process, comprehend, and accept overwhelming life experiences (“Beta elements”) only by working them through with a caring other—someone who can contain or safely hold us and on whom we can rely in constructing a lifeaffirming rather than life-negating response to unbearable experiences. In the more recent work of Peter Fonagy and Mary Target (2003), this process of “working through” is construed as a form of play. With others, we play with reality—oscillating between a “pretend mode” in which images and ideas are allowed to take on a life of their own, and a mode of “psychic equivalence” in which ideas are made to stand for some external reality. Both for Bion and for Fonagy and Target, concepts are equated with other things that help a child objectify and vicariously control its relationship with the world, such as mother’s milk, food, toys, blocks, paints, and found objects. Conceptual thought, in this view, is a means whereby one manages one’s life in relation with others, a way in which we contain and control the life experiences that threaten to engulf, undermine, or nullify us. However, to be contained is not simply to be held securely, for being held may also be experienced as constricting, confining, and claustrophobic.

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How we balance the need to be contained against the equally powerful imperative to open ourselves up to the world—including experiences that may take us to the very limit of what can be contained, processed, or endured—is perhaps nowhere more vexed than at the transitional periods of our lives, and in the lives of migrants.

THE OEDIPAL PROJECT

In the course of recent fieldwork among African migrants in Europe (Jackson 2013), I recorded a series of conversations in Amsterdam with Ibrahim Ouédraogo, a young man from Burkina Faso. In the following excerpt, Ibrahim describes his childhood longing to leave his village and explore the wider world. “My father was the tenga naba [village chief ]. Our family had always been in the village. We could not move as others did. There were times when I thought about it, but I knew my father’s importance in that place, and why we had to stay.” “Why did you want to move? Was it because of the drought, the famine?” “Not really. From age seven, I wanted to go elsewhere. You feel it inside. You can’t give words to it, but it’s a strong feeling, to go to a big town, to move elsewhere. When visitors came, I always wanted to be present, to hear the stories about where they came from. I was always being chased away! When I saw people who lived in bigger villages or towns, I was curious to know what life was like in those places. There was no school in my village, so I was curious to know what school was like. I wanted to discover things on the other side, though I could also see that people in towns had more to eat than in the village.”

When the American anthropologist Della McMillan first visited Burkina Faso in 1977, people in the village of Damesma were suffering the effects of declining crop yields, low income, and impoverished soils, and many were leaving the village to resettle in river basins where “some of the most debilitating diseases known to humanity—malaria, schistosomiasis, sleeping sickness (trypanosomiasis) and river blindness (onchocerciasis)”—had been partially brought under control (McMillan 1995, 1). I was therefore surprised that Ibrahim would downplay climate change and hunger as reasons that his thoughts turned to places beyond the horizon as offering the chance of a more fulfilling life. “Did you want to go far away?” “No, I didn’t think of going far. I thought mainly of going to Kaya, which was about ten kilometers from my village.”3 “How old were you when you first left your village?” “I was twelve. I went to Kaya. Up to that time, my father was afraid to let us to go to Kaya. He wanted us to know our traditions, to be strong in our customary way of life. Even now, I hear my father’s voice saying, ‘You must be a good example. You must honor the traditions.’ But I did not want to spend all my life in Damesma. It was too limited [limité] for me.”

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“Can you tell me about your first impressions of Kaya?” “It was the first time in my life that I saw ice.”

I instantly recalled Aureliano Buendia’s last memory in Gabriel García Márquez’s One Hundred Years of Solitude—of a distant afternoon when his father took him to see a block of ice. Ibrahim continued: “I had never seen ice before. I asked myself how it was possible. Was it magic, or what? It wasn’t water. Water could not be solid. I could not believe it was real. But they were selling wooden sticks with ice formed around them. There was a long line to buy one. I asked what was going on. When they told me, I joined the line.” “Were there other things that you found surprising?” “Yes, everything!” “For example?” “The houses, the cars . . .” “Had you never seen a car?” “I had seen one, two or three years before, but not up close. Now we could run up to it and look at it, look at the tires, the places where people sat. We could walk around it, and look at it properly.” “When you returned home to Damesma, what did you remember about Kaya?” “I knew that my life would be better in a bigger place. I thought, ‘Maybe one day I will go far,’ but I had no way of doing this. I could not move without my family, and my family had to stay in Damesma. So I stayed, too.”

I spoke briefly to Ibrahim of American teenagers rebelling against their parents, and asked him if he had ever rebelled. “Sometimes I would refuse to help my mum when she wanted me to work in the fields. I would refuse to carry the peas or the water. I’d say, ‘I’m going to a party.’ She would say, ‘I need you to work,’ but I would go to the party just the same. I’d do things she didn’t approve of. For example, she would prepare some food especially for us, but I would say, ‘No, this is no good, make it differently,’ or I would steal some sugar or sauce, or beans or maize, and go and cook my own food on a fire in the bush. Or I would go out in the morning and come home late at night. Go hunting. Things that our parents didn’t want us to do, but that we felt we had to do at that age. If you don’t do what you want to do, you’ll regret it later.” “How old were you at this time?” “Around eighteen. I didn’t rebel so much against my father. But with my mother it was very different. When I got older and thought about it, I realized it was something you have to do at that age to know life, to discover society. Even girls will rebel, going off with boys, stealing, having sex, sometimes getting pregnant. In Burkina we try to keep these things hidden, but here [in Amsterdam] it’s much more out in the open. You see children on television screaming at their fathers, ‘I don’t want that! I’m not going to do that!’ Back home you would not see that. Parents are more respected.”

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I was fascinated by the ethical dilemma Ibrahim faced, wanting to make his own way in the world yet keenly aware of his filial obligations, to keep faith with his parents’ values. At stake here is the Oedipal project4—the existential imperative to discover and create one’s own ground, objectifying oneself in a form other than the form first defined for one by parents, tradition, or circumstance. This implies severing one’s exclusive attachments to parents in order to enter a phase of generalized attachment to peers—“to know life, to discover society,” as Ibrahim put it. This transition from being a child in one’s parents’ household to being an adult in a home of one’s own also anticipates the transition that is mediated by migration. Both involve initiatory ordeals. Both entail symbolic death and rebirth. And the ethos of filial piety is often at odds with the imperative of self-definition. When I broached this matter with Ibrahim, he readily acknowledged the potential double-bind. “It’s because of our culture. This responsibility to our family and to our parents is always on our minds. We think, ‘Is this really what I should be doing? Do I have the right to do this?’ Even if our parents are dead, we ask ourselves if it is really necessary or really right to do what we are doing. We grow up with this. We can’t overcome this way of thinking. It’s something we are born into. Sometimes I feel guilty about being in Europe without my parents’ blessings. Or I think back to the time when I was finishing Qur’anic school, and my mother wanted me to return to Damesma. Even now, I regret not respecting her wishes. She died before I could explain to her why I could not go back. When I was working in the hotel in Ouaga, my father would come to visit me. He would say he had arranged for me to marry. I would tell him that it wasn’t time, it wasn’t good timing. I would put him off rather than do his bidding. Now I wonder whether my refusal to take his advice led to his death, and whether I am going to have bad luck in life because I went against his will.”

The process of becoming a person in one’s own right is characterized by a tension that is never fully resolved, for the desire to become autonomous is countermanded by a yearning to be dependent, the desire to do what one wants is no less urgent than the desire for limits, and the dream of a more fulfilling life for oneself comes up against one’s sense of responsibility for and indebtedness to others.

LIFE WITHIN LIMITS

For more than forty years, my fieldwork among the Kuranko of northeastern Sierra Leone has provided me with culturally specific examples of how freedom is never limitless but exercised within limits, contained rather than unconfined.5 Whereas one’s social identity is determined patrilineally (and one’s physiological essence stems solely from one’s father’s semen), one’s destiny may depend as much upon one’s mother and mother’s brother as on one’s father and his brothers. This counterpoint between a space dominated by rules and a space of greater informality, affection, and playfulness finds expression in the contrast between one’s father’s place (fa ware)—the place where one was born and

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raised—and one’s mother’s place (na ware)—the home of one’s mother’s brothers.6 This tension between the patriarchal law of the father and the loving care of the mother not only informs the intersubjective life of the family, but finds expression in images of the polis, since rulers, whether local or national, are expected to embody the power to administer the law of the land as well as the power to protect and care for their subjects.7 When Kuranko say they are “in the hands of” a chief or power holder, the metaphor is doubleedged, since they are at once subject to his whims, under his thumb, at his mercy, and in his debt. Among the Kuranko, the dialectic of obligation and choice is evident in the interplay between village and bush, for while the village is often associated—particularly by the youth of today—with oppressive limitations—“the bush” signifies an encompassing, dangerous, yet potentially liberating space in which social norms are placed in abeyance, social boundaries are transgressed, and miraculous transformations are undergone. The bush is an imagined elsewhere, a transitional space, in which the socio-moral ties of the town can be loosened and a person can experience his relations with others in transcendental terms, mediated by music, palm wine, money, friendship, spirit possession, laughter, love, magical mobility, and even the promise of eternity. But just as the achievement of independence carries the responsibility to provide for those who brought one into the world, so any gains won in the wilderness must be shared with the community from which one originally set forth. This ethical ambiguity informs all the migrant narratives I have collected. One can agree with Ernst Bloch (1988) that “something is missing” in a person’s life, making him or her feel empty, dissatisfied, unfulfilled, and incomplete; but exactly what will satisfy this inchoate need is seldom clear to the person who experiences it (1–17). Inchoate, amorphous, and volatile, one’s will to exist fastens or focuses opportunistically on various objects, some actually at hand, some absent, some wholly fantastic, in a search to objectify or consummate oneself in the world. But unlike reality testing, the imagination always goes beyond what the world actually is, or any person can actually be (Sartre 2004). Money begins, Philippe Rospabé argues, as “a substitute for life” (quoted in Graeber 2011, 133).8 But many other things besides money can give momentary form to the vague sense of what will make good the lack in one’s life. When a migrant speaks of a quest for a better life, we cannot presume to know what this “life” may be. Utopia, need we remind ourselves, means “no-place” (ou-topos). Migrant narratives bring into sharp relief the variety of things that have been lost, or gone missing, or not yet been found, and without which one’s life is profoundly impaired—an absent parent, a lost home, a lack of food, money, mobility, or companionship—while at the same time suggesting that dreams are seldom realized. This view that the world as given is not enough, or is too confining, and its corollary—that one must choose another world for oneself, cultivating one’s own garden rather than working on one’s father’s farm—entail a double bind that every migrant experiences in some measure, yet speaks to us all, caught as we inevitably are between the circumstances that shape our lives and the lives we project and struggle to shape for ourselves.

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N OT E S

1. “We are entirely made up of bits and pieces, woven together so diversely and shapelessly that each one of them pulls its own way at every moment. And there is as much difference between us and ourselves as there is between us and other people” (Montaigne 2004, 131). “Properly speaking, a man has as many social selves as there are individuals who recognize him and carry an image of him in their minds” (James 1950, 294). 2. From the Latin paene (“almost”) plus umbra (“shadow”), the penumbral connotes a phenomenologically indeterminate zone “between regions of complete shadow and complete illumination,” “an area in which something exists to a lesser or uncertain degree,” and “an outlying surrounding region; a periphery” (American Heritage Dictionary, 4th ed., s.v. “penumbra”). 3. Kaya is a provincial capital on the Mossi Plateau, a center for weaving and tanning. When Ibrahim first visited that city it had a population of about thirty thousand. 4. I borrow and adapt this term from Norman O. Brown (1985). 5. I refer here to my recent ethnographic study of Firawa—the Kuranko village in which I first did fieldwork in 1969 (Jackson 2011). A sequel to this work, focused on African migrants in Europe, was published 2013. 6. A similar contrast may be drawn between the formality of relations within one’s own generation and relations with grandparents, with whom, as with the mother’s brother, a playful or “joking” relationship obtains. 7. George Lakoff argues that this same tension between patriarchal control and maternal care finds expression in American political ideologies. While liberals emphasize the responsibility of the state to care for its citizens, conservatives emphasize the state’s responsibility to protect the country and its constitution (Lakoff 1996, 62–63; cf. Hage 1996, 463–85). 8. David Graeber points out that this substitution of money for life explains why debts are often collected in the form of “bloodwealth,” or through the taking of life, or pain inflicted on the body of the debtor (2011, 133).

REFERENCES

Adorno, Theodor. 1973. Negative Dialectics. Translated by E. B. Ashton. New York: Seabury Press. Arendt, Hannah. 1973. Men in Dark Times. Harmondsworth, UK: Penguin. Badiou, Alain. 2012. The Adventure of French Philosophy. Translated by Bruno Bosteels. London: Verso. Bion, Wilfrid. 1975. Attention and Interpretation: A Scientific Approach to Insight in Psychoanalysis and Groups. London: Tavistock. Bloch, Ernst, and Theodor W. Adorno. 1988. “Something’s Missing: A Discussion between Ernst Bloch and Theodor W. Adorno on the Contradictions of Utopian Longing.” In The Utopian Function of Art and Literature: Selected Essays, translated by Jack Zipes and Frank Mecklenburg, 1–17. Cambridge, MA: MIT Press. Brown, Norman. 1985. Life against Death: The Psychoanalytical Meaning of History. Middletown, CT: Wesleyan University Press.

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Das, Veena. 1975. Critical Events: An Anthropological Perspective on Contemporary India. Delhi: Oxford University Press. de Certeau, Michel. 1984. The Practice of Everyday Life. Translated by Steven Rendall. Berkeley: University of California Press. Fonagy, Peter, and Mary Target. 2003. Psychoanalytic Theories: Perspectives from Developmental Psychopathology. New York: Brunner-Routledge. Graeber, David. 2011. Debt: The First 5000 Years. New York: Melville House. Hage, Ghassan. 1996. “The Spatial Imaginary of National Practices: Dwelling-Domesticating/ Being-Exterminating.” Environment and Planning D: Society and Space 14:463–85. Jackson, Michael. 1998. Minima Ethnographica: Intersubjectivity and the Anthropological Project. Chicago: University of Chicago Press. ———. 2011. Life within Limits: Well-Being in a World of Want. Durham, NC: Duke University Press. ———. 2013. The Wherewithal of Life: Ethics, Migration and the Question of Well-Being. Berkeley: University of California Press. James, William. 1950. The Principles of Psychology. Vol. 1. New York: Dover. ———. 1977. A Pluralistic Universe. Cambridge, MA: Harvard University Press. Jaspers, Karl. 1997. Reason and Existenz. Translated by William Earle. Milwaukee, WI: Marquette University Press. ———. 2000. Karl Jaspers: Basic Philosophical Writings. Edited and translated by Edith Ehrlich, Leonard H. Ehrlich, and George B. Pepper. New York: Humanity Books. Lakoff, George. 1996. Moral Politics: What Conservatives Know That Liberals Don’t. Chicago: University of Chicago Press. McMillan, Della. 1995. Sahel Visions: Planned Settlement and River Blindness Control in Burkina Faso. Tucson: University of Arizona Press. Montaigne, Michel de. 2004. “On the Inconstancy of Our Actions.” In The Essays: A Selection, translated by M. A. Screech. Harmondsworth, UK: Penguin. Myers, Fred. 1986. Pintupi Country, Pintupi Self: Sentiment, Place, and Politics among Western Desert Aborigines. Washington: Smithsonian Institution Press. ———. 1989. “Burning the Truck and Holding the Country: Pintupi Forms of Property and Identity.” In We Are Here: Politics of Aboriginal Land Tenure, edited by Edwin N. Wilmsen, 15–42. Berkeley: University of California Press. Rospabé, Phillipe. 1993. “Don archaïque et monnaie sauvage.” In Ce que donner veut dire: Don et intérêt, edited by MAUSS (Mouvement Anti-utilitariste dans les Sciences Sociales). Paris: Éditions la Découverte. Sartre, Jean-Paul. 1968. Search for a Method. Translated by Hazel Barnes. New York: Vintage. ———. 2004. The Imaginary: A Phenomenological Psychology of the Imagination. Translated by Jonathan Webber. Revised by Arlette Elkaïm Sartre. London: Routledge. Spinoza, Benedictus de. 2002. Complete Works. Translated by Samuel Shirley. Edited by Michael L. Morgan. Indianapolis: Hackett.

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26 NEVER QUITE GIVEN Calling into Question the Relation between Person and World in Postinvasion Iraq

Hayder Al-Mohammad

I first met Adel in the summer of 2005. I had checked in to the hotel where he was working as a security guard. I saw Adel from some distance making his way to the entrance of the hotel, and out of politeness, and some curiosity, I waited for him with the door open. He did not notice me. He walked straight into my chest. His dark blue shirt, many sizes too large for him, hung over his dark blue trousers. His skin was thick and scorched, even for a Basran who lives with summer heat exceeding forty-five degrees Celsius for many months of the year. He looked at me, wondering what I was doing holding the door for him, then made a remark or two under his breath and moved on hurriedly. It was my first time in Iraq as an adult that summer. I was born in Baghdad in 1982, but my family and I were to leave the country only a few months later. I didn’t know many people in Basra and Baghdad in those early days, so I spent much of my time initially in the hotel and the surrounding areas. Adel, like many of the other workers in the hotel, became a good friend of mine in a relatively short time. His twelve-hour shifts were meant to begin at seven in the evening. He worked every day except Sundays, his day off. I never knew Adel to arrive on time for his shift even once, however; nor can I remember a week when he worked all six days. That was Adel. At the time, the city of Basra was under the control of militias, gangs, and thugs. Furthermore, no one could be quite sure what the British soldiers roaming the streets might stir up. Thus, few ventured beyond their homes or places of work. The hotel workers, guests, and I were usually locked in the hotel by the evening. It was in those years of having little to do that Adel and I would talk endlessly about the price of cigarettes, my

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life in the United Kingdom, and the different personal struggles he and I were going through. Adel took tremendous interest in my life in the United Kingdom, my life as a PhD student, and other such trivialities. We’ve all got problems. . . . It doesn’t matter how big or small they are, in the end they always produce the same headaches. That was Adel’s mantra. Life was one big long headache unto death. In one of our conversations, several years after I first arrived in Basra, Adel turned to me as we stood outside the hotel alone, asked me for a cigarette, and then shook his head, muttering silently, I just can’t make it work. He was referring to his life and how at his age—he was then in his early forties—he had not been able to secure any stability for himself and his family. People have built homes, they have cars, and cars for their children. Even a foreigner, even someone from a different planet could have found a way to build a proper life in this country . . . everyone but me. The dehiscence of Adel and his world was a continual theme in our conversations throughout the years. It was never articulated as a sense of foreignness or alienness in his world, but rather that some gap between him and the world was, at the very least, forever requiring surmounting in his struggles for money and security for him and his family. Or worse, that the gap between him and the world of postinvasion Iraq was an insurmountable one—always there from the very beginning, but becoming greater with his poverty and uncertainty. Such “gaps” or “schisms,” however, should not be dismissed glibly as merely private mental events. Nor should we as anthropologists recoil from the idea that persons are in as much doubt (maybe more?) about their own socio-cultural lifeworlds as the everinquisitive anthropologist is. More than half a century ago, the philosopher Wilfred Sellars (1997) attacked the epistemologists and philosophers of mind of his time for the “bad philosophical habit” of seeking the unmediated grounds of contact between person and world. This “bad philosophical habit” came to form, according to Sellars, the “myth of the given”: it could not dispense with the idea that there lies a primordial bedrock upon which truth claims, perceptions, and judgments rest. Anthropology, however, is not without its own “given.” Not necessarily universal, but ubiquitous enough to require, if not debunking, then certainly critical work. The given in anthropological inquiry goes something like this: people exist within socially, culturally, and historically specific contexts. They just do—that is not up for question! We are dealing here in bedrock claims; to dig any further, the spade will simply turn. The easiness by which we assert, or unquestioningly proceed by, such seemingly uncontroversial claims disquiets me, and I imagine a fair few others (cf. Dilley 1999; Last 2007). Is it really as easy as that? The relations of person and world are just a dumb given? Or maybe it is more of the order, as Wittgenstein once put it: “[T]he questions we raise and our doubts depend on the fact that some propositions are exempt from doubt, as it were like hinges on which those turn” (1969, §341). There is, however, far too much at stake in simply asserting a relation given between person and world. More than the critical work of clarifying anthropological categories, the relation between person and world, and its givenness or otherwise, is at root an

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ethnographic problem. If person(s) and world are fundamentally related in some form or another, related in a way that is just given, then the anthropologist is simply left to elucidate, account for, or engage with the heterogeneous ways in which that fundamental relation, or relations, is played out in the world. Defeating a picture of sociality as originating from a wordless subject, or disembodied Mind, as Cartesianism has been characterized and caricatured as, has certainly been the thrust of much work throughout the last several decades. However, the corrective work to disturb the perceived certainties of one episteme has come at a cost. The world as just given to persons should disquiet the anthropologist and social scientist as much as the positing of the Mind prior to the living of life itself. Many anthropologists and social scientists have turned to Heidegger’s felicitous formulation, though less to its actual adumbration and explication, of “being” as “being-inthe-world” to counter the priority given to mind and being over the world. Heidegger’s hyphenation of the terms does not just signal their intrinsic relation. Rather, the terms are primordially one. Are persons born into this oneness, or is coming to be in the world a project that persons take on resolutely, in their everyday, affective, spiritual, and extramundane work? Anthropological inquiries into medicine and ill health have done much to make precarious the grip personhood has on well-being, worldhood, and life itself, and to indicate some of the possible tensions or frailties inherent to being-in-the-world. Considerable literature is available on the lived experience of disability in general (Charmaz 2000; Kay-Toombs 1992; Kleinman 1988; Murphy 1987) and of the experiences of suffering, violence, and ill health (Good et al. 1994; Irving 2004), which draws attention to the disruptive and destructive impact such experiences have not only on a person’s own life, but on personhood itself—its very enmeshment in sociality and the world. In rather general terms Arthur Frank, in his book The Wounded Storyteller, notes of disease: “In the beginning is an interruption. Disease interrupts a life, and illness then means living with perpetual interruption” (1995, 56).1 Even in such domains as medical anthropology and sociology, however, which highlight the breakdown and reconfiguration of the relation of body and world within the complex of being-in-the-world, much of the stress is of disease, injury, or ill health as a form of disruption into life, which is taken as almost without disruption. This chapter is not an investigation into how breakdown opens up a disclosive space to engage the conditions of possibility of social life; it is not about how registers of suffering, uncertainty, or the looming figure of death and the limits of life open different horizons of meaning, intelligibility, and experiences. Rather, I turn to exchanges, moments, and events from my friendship with Adel, and how his struggles to keep him and his family alive during the violence and uncertainty of postinvasion Iraq point to a much more unsettled and fraught relation between Adel and the everyday world in which he tries to make his way. It was neither illness nor any injury that interrupted the flow of Adel’s life, but the flow of life itself, which was continually caught in the turbulence of

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the terror and violence of postinvasion Iraq, his poverty and financial uncertainty, and ultimately the contingency and precariousness of the relation between Adel and the world. By seeing the relationship of person and world not as something we are born into, but as a contingent and uncertain enmeshment that is continually forged and reforged, we open to the possibility to move beyond the given to an understanding of the enigma inherent in personhood, worldhood, and the intimate, though precarious, hold we have on life and death, being, and meaning.

E V E RY D AY S T R U G G L E S

Whenever Adel would finally appear for his twelve-hour shift in the evening, he would rush to the hotel’s kitchen, pour himself a large mug of tea, and stand outside chatting with whoever was prepared to have a chat with him. Or he would run off somewhere on an errand that he claimed was urgent, or disappear to sleep on some cardboard next to the hotel generator, where he was well hidden from view. He had to be back at his station in the front of the hotel before eleven in the evening, however, because the sheikh2 who was running the hotel on behalf of the owner would come back to check the receipts of the restaurant and the hotel for the day. The sheikh would ask to see all the hotel’s employees and would consider it a personal offense if they were not fulfilling the roles they were being paid for. Those of us in the hotel, workers and guests, would rush to find Adel to either wake him or shout down the road in the hope he might hear us and return before the sheikh arrived.3 The workers in the hotel did not particularly like Adel. He was not related to anyone there, and his tribe was small and considered to deal in petty crime and little else. In the hotel Adel was the butt of many jokes; we all were, but Adel more so than the rest. During the peak of the violence in Basra between 2005 and 2008, the militias would battle among each other in front and behind the hotel. Mortars would fly over the hotel, inadequately directed somewhere in the region of the Palace, where the British Army was resident, though landing anywhere but at the Palace in most cases. Street shootings, kidnappings, rape, and dead bodies on the streets were not events out of the ordinary during that period. In such circumstances, it made the figure of Adel, or rather the position he was in—of having to be the first line of protection against any attack on the hotel or its occupants— seem utterly ludicrous. Adel was, at best, a security guard in name only. At night, after the sheikh had left, Adel would sleep on the hotel doorsteps, with an inadequate fence between him and the street. He was bitten by rats, bugs, and even dogs; stray bullets glowing red and yellow in the dark night would stream across the sky as he tried to get some sleep. He would awake at five or six in the morning, breakfast quickly, and run to the open market. From seven in the morning till four in the afternoon he could be seen selling remote controls, or batteries, or whatever he had at hand. Under the extreme heat of the summer sun, among lots of other sellers, Adel would shout and scream what he was selling at the passers-by to try to gain their attention. He was not the

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only one shouting and competing for the attention of buyers; bigger stalls had loudspeakers that drowned out his voice, and some had cassettes playing on a loop that announced, through large speakers, the product being sold and its price. By the time he arrived for his shift at the hotel in the evening, Adel’s throat was sore, his voice coarse, his skin scorched by the sun, and his face somewhat dazed and tired. Many days he sold nothing. Although he had six daughters (two at the University of Basra) and three sons—only one was working; the other two were either at a technical college or at the University of Basra—his dejection never seemed to reach panic. Instead, he was resigned to play this all out again the next day. The math was simple: his monthly income as a security guard was approximately $160, and six days a week in the market rarely brought in more than $120 per month. His rent was a flat $200, and from somewhere he had to find enough to feed and support his family. Adel’s position was always a precarious one. He could not fulfill the role he was being paid for, and his attitude to his job was careless. On rare occasions Adel could be lucky. Some years ago he was resting at the reception bar with a large mug of tea, telling one of his tall tales. Everybody was laughing. I walked in amid the fuss, and Adel warned me that in a few months he would be giving up his job and would stay in the room opposite mine in the hotel. “Did you marry a rich woman?” I asked. Better. I was sleeping and needed to urinate. It was about 5 a.m. I get up and behind the palm tree in front of the hotel door and am about to unzip my trousers when Abu-Mustafa [the owner of the hotel] spots me, thinking I am doing my morning checks. “We need someone like you who is prepared to stay awake all night,” he said to me. I’ll be managing his businesses in Basra in a few weeks. . . . You all better show me some respect. . . . The hotel staff and I were all laughing. We knew Abu-Mustafa was desperate to be rid of him. He thought Adel was unclean, stupid (“hmaar,” i.e., a donkey), and an embarrassment to the hotel, but this bit of luck would keep Abu-Mustafa quiet about Adel for a while. Adel’s ability to maintain his job at the hotel even though several of the employees wanted to be rid of him so they could bring one of their own relatives to fill his post; his ability to stand among lots of other sellers on the street around the grocer’s souk in AlAshar, the commercial center of Basra, and shout and scream his way to being noticed by passers-by in the hope that they would buy whatever he had to sell that day—these things were only a small part of the relentless work Adel and his family put in to try to sustain themselves. Any picture of, or attempt at describing, the souk where Adel worked in the center of Basra could not account for the heat, the smell, and the violent sounds of hundreds of megaphones announcing, repeatedly, the names and prices of the products on sale by each vendor. In this great sonic battle Adel, one voice among a cacophony of mechanical sounds, shouted out what he was selling for seven or eight hours every day, six days a week. The sound from a person’s voice is different. My throat and head hurt every day, but I tried the megaphone and I did not sell anything. We didn’t have anything. After the invasion [March 2003] there was no work and money. I took what we had in our house to sell in “souk al-haraj.” Our things ran out and I saw others

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selling small things like cheap Chinese torches. I bought a few and stood there in the souk. Slowly I became used to the people, the fighting, the shouting. . . . Now I’m the sheikh of the souk. Experience and encounters shape how Adel comports himself in order to function in the market—a continual testing of what buyers want, of his manner, and of what is required of him to withstand the onslaught of sellers competing with him for precious dollars. These attunements are negotiated and renegotiated constantly. The souk is never stable. We have months when there is money and just like now, it has been dead since the arb’eeniya.4 Adel’s endless struggles for money to keep up with the demands of his family’s life, and the almost blind indifference he managed to maintain to the violence around him and threats against him, were not his only problems. Adel was difficult; he was unbearably rude at times and prone to behaving oddly. He once threw a vase down the hotel stairs after storming into the hotel and shouting at nobody in particular. He was also known to speak to people who were senior to him in age and social status in remarkably brusque terms. People around him in the hotel had learned to deal with all of these oddities. Some would mock and belittle him. Others would brush his behavior off as that of an uncouth buffoon. Others still would talk to him quietly and try to protect him. Up until the improvement in security in Basra from the end of 2008 and onward, the hotel guests never numbered more than a dozen, though usually it was me, Abu-Daif, AbuMohanad, and one or two other regular guests. In such an environment Adel’s eccentricities were there to be seen by only a select few, and since we were forced to spend much time together, we all became, to varying degrees, close to one another.

U N R AV E L I N G A N D D I S E N TA N G L I N G

By 2009 the security situation had improved tremendously in Basra. The Iraqi government had launched Operation Saulat Al-Fursan (Charge of the Knights) the previous year to dismantle the control the militias and gangs exercised over Basra. It was much safer to travel in the evenings, and many coffee shops, restaurants, and businesses were staying open till late in the evening and into the early hours of the morning. I was spending less time in the hotel during that period because I was out meeting friends and acquaintances who were more prepared to venture out during the evenings. The more I was out meeting friends in Basra, the less I was in the hotel and talking to Adel. Nevertheless, I would hear stories from the other hotel workers and sometimes even from the guests, who had begun to slowly increase in number. Abu Zaynab, the evening receptionist, said to me: It’s impossible to hide Adel’s craziness from all these people. Whereas Adel was previously considered eccentric and slightly rude at times, with the increase in the number of guests in the hotel he was now seen as someone “crazy”; someone who had the potential to scare customers away. Adel was also becoming a stranger in the place where he worked. New staff had come into the hotel as others found work elsewhere when the economy in Basra began to improve. The relations Adel had formed, even antagonistic ones, through many years of working together with men and women such as Salah, Hazim, Ammar,

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Ahmed, Oum Karim, and Oum Zaynab, and his sense of who he was in that hotel was beginning to fall apart. One particular evening I was chatting to a group of shop owners near the hotel. I had come to know them well through the months and years of being at the hotel and buying water and soda in their shops. Two of us were hungry but did not want a proper meal, so we wandered down the street to buy some bread and maybe eat a bowl of hot chickpeas from one of the street sellers. I was irritated at the time by some builders dumping their waste on the street, blocking almost any traffic. Because I knew the foreman I started talking with him about the sloppiness of his work. My friend joined in and then several others as well who were sitting nearby. Stern words were exchanged but nothing threatening or even unfriendly. The foreman said, “The whole country is broken, why worry about his slight indiscretion?” The exchange became louder, so I was not immediately drawn to the distant shouts. A few from the group I was with began to look down the road. We all quieted down. Yelps and screams were now clear and audible. They were coming from the side road of the hotel. We all knew each other on this road, so we rushed to see who from among our acquaintances was in trouble. Immediately, from the corner of the street I could see Adel scrapping away. His large shirt was shredded and his face was cut and bleeding. He was being pushed and pulled by several people I had seen him talking to over recent months. We plowed in, trying to pull everyone apart. Adel was screaming that he would murder anyone who touched him. I grabbed him, but he was too strong. Several others quickly joined me, and we practically lifted Adel and threw him on the ground; we collected ourselves and gathered around him, trying to form a barrier. He charged at us. We blocked him. I was screaming at Adel, trying to bring him back from wherever his mind had wandered away to. He was not calming down. Instead, he pretended to walk away only to run around us to get back into the scrap we had managed to rip him apart from. This time when we peeled him off we were angry from taking blows from Adel and the others, and our bodies were full of adrenalin. We pinned Adel against a wall, letting him expend his energy as he tried to fight us off. He was shouting and swearing, and so were we. As the others were dispersed I could hear indiscriminate insults and threats made against Adel. Briefly, this brought his rage back to life. We pinned him hard this time, almost slamming him against the wall. As the tension eased and everyone started to return to their shops and groups of friends, I made Adel go for a walk with me to try to calm him down and find out what happened. As we wandered along the streets in the dark of the evening, Adel explained how he had been borrowing money from the men he was fighting against. He had told them of a business deal he was concocting that required several hundred dollars. There was no business deal, though. He had been using the money on things his family required. He knew there would be trouble down the line, but he felt he had no options. Once he had calmed down and we had both finished with the stories, admonishments, and regrets, Adel returned to utterances he had repeated on many occasions to me: I’m not made for this world. I just can’t make it.

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UN-GIVEN

In the winter of 2009 I was sitting outside the hotel’s restaurant, waiting for Adel to appear for his evening shift to joke and chat with him. Your friend is not coming back, Abu-Ali said, and this with a smile. He was told to stay at home. “What happened?” I noticed that Adel had signed in yesterday when he had not shown up for work and told the owner. He said that shit was never to come near the hotel again. “When did this happen?” Just now. I was looking at the book and saw that he had signed for yesterday, today, and tomorrow. . . . I took it to Abu-Shadha and that was that. That evening I saw the hotel owner, who I would usually have breakfast with on the rare occasions when he would be in Basra. I asked if there was any chance of his reinstating Adel. None at all. Adel had a stall in one of the larger markets in Basra, though he would rarely keep to one location. By a stall I mean nothing more than a blanket on the ground with whatever bits he was selling. The next day I looked for him in the various markets in the center of Basra and could not find him. One of the men Adel was constantly fighting with in souk al-haraj was packing up for the day. I asked of Adel’s whereabouts. He swore at Adel, calling him a thief. None of this was helpful. After a week or so had passed even the workers in the hotel were asking of his whereabouts. What struck all of us in our conversations about Adel’s plight was that even in his poverty he managed to have three of his children at university and doing well—a feat that nobody was able to match among the hotel workers. Even some of the richer guests’ children had not managed the necessary grades that would enable them to attend the better universities in Iraq such as the University of Basra. Adel lived in an area of Basra called “khamsa meel”—literally, “five miles”—so called because it is located approximately five miles from the city center. One of the poorest districts in Basra, it is a place outsiders rarely enter. One day I had a funeral to go to in the area with a few of the hotel workers. We decided that it was a good opportunity to find out Adel’s whereabouts. Within half an hour of searching, a few people had told us of an area where we could find his wife and family. We haven’t seen him for a while. He’s nowhere. How am I supposed to raise his children? What disaster has God thrown on my head? . . . I walked away in the midst of the shouting. As we were returning, Abu-Latif, from the back of the car, muttered: If you worry about this family then there are others, and others still. . . . We can’t even look after ourselves. . . . Adel was gone. He was not the first to simply go missing in postinvasion Iraq. He was not the last, either.

B E I N G - I N A N D FA L L I N G - O U T

How is someone able to fall out of the world, as Adel did? If being is being-in-the-world, and being-in-the-world is not a contingent fact about human being but is ontologically primordial, and if, as Tim Ingold (2007) has so evocatively argued, life is to be thought

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of as lines entangled and enmeshed among other lines/lives, how is it possible for a life to slip out of the enmeshment of our necessarily worldly being? Before I proceed to discuss what I believe to be the deficiencies in the account of “beingin-the-world,” it is important to bear in mind that the problem is not at root a theoretical one. A misunderstanding of accounts of being-in-the-world is not what I aim to show. Rather, it is the picture of the very fundamentals of how we think of, and attempt to account for, the struggles of and—importantly—for sociality that should be at stake. That is to say, sociality and worldhood are not simply conditions or dumb givens, but that which persons struggle for, are confused about, and can become estranged or foreclosed from. In more formal terms, if existence is being-in-the-world, how is it possible for beings to be disembedded from the world that primordially we must be in? In our everyday state, Heidegger suggests in his account of being-in-the-world, we do indeed enjoy the sensation of being-at-home when persons are able to take on their social positions: “This character of being-in was then made more concretely visible through the everyday publicness of the ‘they’ which brings tranquillized self-assurance—‘Being-at-home’ with all its obviousness—into the average everydayness of Dasein” (Heidegger [1927] 1967, 233). However, in the experience of “anxiety” in which persons feel a discontinuity with the world of “tranquillized self-assurance,” “Being-in” enters the existential “mode” of “the not-at-home” (233). Thus, when being experiences uncanny discontinuity with the world, the relationship to the worldly place vacillates from being-at-home to not-beingat-home. However, if such is Heidegger’s position, we may be faced with a contradiction and not an ambiguity regarding whether being is necessarily in-the-world or not-at-home in the world? Is the sense of being-at-home to be regarded as more “real” than not-beingat-home, or vice versa? Or are they to be thought of as equivalent, existentially speaking? Heidegger’s answer is unambiguous: “Tranquillized, familiar being-in-the-world is a mode of the uncanniness of Dasein, not the other way around. Not Being-at-home must be conceived existentially and ontologically as the more primordial phenomenon” ([1927] 1967, 234; emphasis in original). This quote from Being and Time should make clear, initially, that for Heidegger beingin-the-world is a much more fraught existential structure. World and being are not entities, let alone separate and separable ones, yet being’s most fundamental existential grounds in the Heideggerian account are unsettled and unsettling. Even in philosophical accounts of being-in-the-world so prevalent in anthropology and the social sciences we have overlooked the uneasiness of the relationship between being and world. Being-inthe-world does not simply have aspects or moments of fraughtness; on the contrary, uneasiness and unhomeliness (Unheimlichkeit) are to be thought of as part of its constitution. This points to the inherent dynamism and preciousness of persons’ attempts to make their way, and to found a place in the world. Anthropologists have desperately tried to break into the disparate worlds they work in by becoming ever more practically immersed and better versed in the liturgical traditions

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or histories of the people they work with, often overlooking the struggles people have in immersing themselves and being part of their “own” supposed worlds. These worlds are never simply given, waiting for the anthropologist to interpret and theorize the “ontologies” or networks that underlie the living of life itself. There is a long tradition within the discipline of anthropology of counterpoising continuity with discontinuity and of accounting for the dialectical movements within the social between such poles of structure and antistructure (e.g. Leach [1954] 1970; Turner [1969] 1995). With Adel’s disappearance and Heidegger’s phenomenology of unhomeliness there is a possibility to think of the discontinuous as inherent in the continuous, in which both poles are coincident with the other, and not as ruptures or breaks in the smooth flow of life or the everyday, gaining insight into which requires ever newer methods and techniques. Adel’s corpse was found several weeks after he initially went missing. His family did not hold a funeral for him. Whenever his name was mentioned by the people at the hotel over the last several years, there was that faint recognition that it is not only Adel who could slip out from the enmeshment of social life. His fate indicated just how provisional voice, meaning, well-being, and life were. Moving away from the assumption of the world as given relocates the focus onto the physical, emotional, intellectual, practical work that goes into trying to sustain not only our existence, but the type(s) of existence we want to lead. Michael Jackson talks of “the struggle for being” to denote something similar to what I am trying to capture. In Jackson’s words: “Though human existence is relational— a mode of being-in-the-world—it is continually at risk. This implies not only that our being is conditional on our interactions . . . with the world in which we live, but that we are involved in a constant struggle to sustain and augment our being in relation to the being of others, as well as the nonbeing of the physical and material world, and the ultimate extinction of being that is death” (2004, xiv). Where I would disagree with Jackson is in thinking of death itself, or nonbeing, as what William James ([1902] 2002, 113) called the “worm at the core” of our pretensions to happiness. The opposition of life as somehow “fullness” and death as absolute limit and extinction elides the much more precarious relation and entwinement of life and death in which life is lived with death and even, at times, against death.

CONCLUSION

Phenomenological anthropologists have rightly stressed the necessity of persons being-inthe-world. Now, I believe we should inquire instead into the nature of the necessity of the relation between world and persons. Do anomie, madness, disease, and praxical failures occur as part of “being-in-the-world” or as part of the radical experiential discontinuity of the “not-at-home’? In the laboring of everyday life to secure a form of existence for oneself and one’s family and friends, our lives overlap with the lives of others. The countless situations in which as persons and anthropologists we are faced with life projects that are

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struggling, however, suggest a greater dynamism to being-in-the-world since it is never an “account” that is settled, so to speak. Being-in-the-world does not mean one cannot fall out of the world; we are never held so securely. The world, though given to us in experience as the given, is nevertheless a given that can be taken, or simply fall, away. When discussing Adel with several friends I was struck by how they all had a prethematized understanding of how each life was reliant on others and how insecure these forms of reliances could be. One particular friend recounted the last weeks of his mother’s life, when it was all too clear that she had not long to live. She had fought for over a year against her illness, but during those last days she had, as my friend said, “loosened her grip on life.” Persons themselves can also disentangle themselves or simply let go and fall away when the struggle becomes too much to bear. It is this strange intermingling of disparate intentionalities—our own and those of others—through which life emerges in the forms we all too rarely are able to recognize in our everyday world. As an indirect homage to the difficulties that Adel had to endure in working in the hotel, several replacements have come and gone, unable to work the long hours for the low wages. Adel’s labor is marked both physically and existentially by the inability of those others to maintain the struggling and productivity that Adel had maintained for more than three years at that hotel. Being-in-the-world is as much about our ability to maintain a grip on the social meshwork as it is about our slipping and disentangling.

N OT E S

I am very grateful to both Veena Das and Clara Han for their helpful comments and encouragement. I am particularly grateful to Clara for her eagle eye and the time she spent on this piece, which improved it immeasurably. 1. Or take, for instance, Oliver Sacks’s account of the insights that injury and ill health afford into life itself: “I found the abyss [caused by “an injury with peculiar effects”] a horror, and recovery a wonder; and I have since had a deeper sense of the horror and wonder which lurk behind life and which are concealed, as it were, behind the usual surface of health” (1984, ix). 2. Though there are many senses of the Arabic word sheikh, in this chapter it will be used only to refer to the head of a tribe (‘ashira). 3. Because of the violence in Basra and the instability of the region, from 2005 until the end of 2008 there were hardly any guests at the hotel. At that time staying in a hotel in Basra suggested that one was not a local and possibly that one had money, which made one susceptible to the risk of being kidnapped. The few guests that were in the hotel tended to be there on long-term business projects. The hotel has thirty-eight rooms of various sizes; until 2009, I did not know of more than eight rooms ever being occupied by guests at any one time. 4. The arb’eeniya or “fortieth” is the forty days’ remembrance of ashura, in which the Prophet Mohammad’s grandchildren and their followers were killed in the great battle of Karbala.

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REFERENCES

Charmaz, Kathy. 2000. “Experiencing Chronic Illness.” In The Handbook of Social Studies in Health and Medicine, edited by R. Fitzpatrick and S. Scrimshaw, 277–92. Thousand Oaks, CA: Sage Publications. del Vecchio Good, Mary-Jo, Paul E. Brodwin, Byron J. Good, and Arthur Kleinman, eds. 1994. Pain as Human Experience: An Anthropological Perspective. Berkeley: University of California Press. Dilley, Roy. 1999. The Problem of Context. New York: Berghahn Books. Frank, Arthur W. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Ingold, Tim. 2007. Lines: A Brief History. London: Routledge. Irving, Andrew. 2004. “Life Made Strange: An Essay on the Reinhabitation of Bodies and Landscapes.” In Qualities of Time, edited by W. James and D. Mills, 317–31. ASA Monograph 41. Oxford and New York: Berg. Jackson, Michael. 2004. Existential Anthropology: Events, Exigencies, and Effects. New York: Berghahn. James, William. (1902) 2002. Varieties of Religious Experience: A Study in Human Nature. London and New York: Routledge. Kleinman, Arthur. 1988 The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books. Last, Murray. 2007. “The Importance of Knowing about Not Knowing.” In On Knowing and Not Knowing in the Anthropology of Medicine, edited by E. R. Littlewood, 18–39. Walnut Creek, CA: Left Coast Press. Leach, Edmund Ronald. (1954) 1970. Political Systems of Highland Burma: A Study of Kachin Social Structure. London: Athlone Press. Murphy, Robert Francis. 1987. The Body Silent. New York: H. Holt. Sacks, Oliver W. 1984. A Leg to Stand On. New York: Summit Books. Sellars, Wilfrid. 1997. Empiricism and the Philosophy of Mind. Cambridge, MA: Harvard University Press. Toombs, S. Kay. 1992. “The Body in Multiple Sclerosis: A Patient’s Perspective.” In The Body in Medical Thought and Practice, edited by D. Leder, 127–37. London: Kluwer Academic Publishers. Turner, Victor Witter. (1969) 1995. The Ritual Process: Structure and Anti-structure. New York: Aldine de Gruyter. Wittgenstein, Ludwig. 1969. On Certainty. Translated by G. E. M. Anscombe and G. H. von Wright. New York: Harper.

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27 MOURNING, GRIEF, AND THE LOSS OF POLITICS IN PALESTINE The Unvoiced Effects of Military Occupation in the West Bank

Lotte Buch Segal

The duration and oscillating intensity of the Israeli–Palestinian conflict have meant that events of death and detention have become woven into the fabric of everyday life for most Palestinians. Many earlier studies of the conflict focused on how these events were voiced, as well as on the ways in which the suffering they entail was palliated by recourse to a language of collective struggle for Palestinian statehood (cf. Peteet 1991; Jean-Klein 2001; Allen 2006, 2008, 2009, 2012; Asad 2007; Khalili 2007). In recent years, however, this language of politics, resistance, and endurance seems to have lost some of its force and cannot encompass the full spectrum of experiences of loss brought about by occupation, not least in intimate relations in the occupied Palestinian territories (hereafter OPT). Based on ethnographic fieldwork in the OPT conducted between 2007 and 2011, this chapter presents two different examples of loss caused by the ongoing, violent conflict. I compare the conjugal loss experienced in the case of widowhood with another instance of loss in which the consequences of detention reverberate over other family members but whose effects cannot be easily voiced or acknowledged publicly. I also argue that, unlike the language of trauma through which public-health literature registers the experiences of relatives and detainees, people are at a loss at giving expression to these experiences in everyday life. Therefore, such experiences tend to be placed outside language and at times even in the delicate register of madness. This failed attempt to bring forth experiences in available languages registers painfully how the occupation splinters the Palestinian territory as much as the hearts and minds belonging there. I anticipate the

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thought that calling something and someone “mad” may tell us how maddening the circumstance of occupation is experienced to be. In the first case I offer from my fieldwork, the cultural nuances through which the maddening effect of violence is gestured at are experienced directly by the widow of a martyr. In the second case—that of a mother and a daughter of a detainee—mental disorder is admitted to but not acknowledged by the audience invited to witness how the toxic effects of the occupation permeate the whole fabric of relations. The latter case opens the equally toxic discussion of how prolonged suffering might erode the capacity to offer mutual sustenance. The argument developed in this chapter is that not all suffering can be equally well articulated or, as Veena Das would say, can find a home in language (1998, 183). Whereas death in the shape of martyrdom appears to be integrated into discourses emerging from shared criteria, other residual effects of the occupation, such as mental disorders and the fracturing of intimacy caused by prolonged detention, are not easily expressed or explicitly acknowledged. Some twenty years after the interim agreements in 1993, “resistance” seems to have lost its allure (Segal 2013, 128, 129). The cases that I present will, I hope, demonstrate the different ways in which occupation becomes absorbed within particular scenes of intimacy related to experiences of loss. I ask how forms of loss are mourned or whether they are even allowed to be mourned at all. I hope thereby to track the consequences of the occupation as they become part and parcel of everyday life and ways of being intimate. Finally, I want to suggest that there is another register of loss—which I tentatively term loss of politics. I am not suggesting that people have renounced any engagement with politics but that there is an exhaustion with registering and mourning every loss (Kelly 2009). While violent death still causes people to mobilize and express anger at the political situation, less grievous forms of loss increasingly fail to register as they are absorbed within everyday life—not quite normalized, but not worthy of public acknowledgment, either. In her book The Rise and Fall of Human Rights, Lori Allen writes convincingly that this exhaustion has occurred in the maelstrom of Palestinian NGOs that are engaged in the burgeoning human rights industry at the very same time that they witness the complete absence of improving basic human rights in the relationship between Palestinians, the Palestinian National Authority, and the State of Israel. The result of this, argues Allen, is a sense of cynicism across “Palestinian human rights defenders, abusers, victims, critics, and observers alike” (Allen 2012b, 2). Whereas I recognize cynicism from my own fieldwork among NGOs, the feelings conveyed in the cases presented in this chapter seem to me to belong to a tragic rather than a cynical register. Nonetheless, I follow Allen by suggesting that even words for political resistance appear to have lost their force by dint of repetition. They are still uttered, but they ring hollow—so loss of politics is a loss of hope for a temporal horizon in which one’s form of life, following Wittgenstein, may actually have a future in language (Buch 2010; L. B. Segal 2014a; Das 1998b, 174).

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LOSS AND MOURNING

Let us first consider the meaning of loss within conjugal relationships in Palestine. The punitive practices of occupation have resulted in profound losses of intimacy to the extent that we could say that what has been lost is a way of being together within the different modalities of married life (L. B. Segal, in press A; P. Johnson et al. 2009). In the felicitous words of Aaron Goodfellow (2008, 17), a loss of a sexual relation might become so profound as to constitute “a passing of a way of being in the world.” I contend that for Palestinian women, the loss of their husbands to martyrdom and/or imprisonment in Israel is precisely such a passing of a whole way of being rather than simply the loss of a particular person. In the two ethnographic cases that I present, I try to show what it means to keep on, to endure—holding on to everyday routines even when life has been, as it were, drained from the everyday. Whereas this ground has been well covered by scholars of the OPT, there is a tendency for such accounts either to emphasize the Palestinians’ preternatural ability to wrest agency from the direst of circumstances or to let the undoubted suffering occasioned by the conflict obscure the fact that life is, as Tobias Kelly (2007, 5) puts it, something “else than blood and violence.” Here, I show how the simultaneity of endurance and loss unfolds for women in two different situations that, on the surface, look similar and yet, on the level of experience, hold out different promises of what it means to endure and how endurance is actually lived. What I wish to specifically emphasize is that the cultural repertoire of mourning is not able to encompass the experience of all form of loss and that there may be room to think of grief as separate from the loss that can be given expression through available forms of mourning. Analytically, the tonality of this chapter is that of Das’s work on the relationship between violence and everyday life. In particular I take my cue from her subtle analysis of how some forms of suffering challenge the idea that all forms of violation can be “voiced.” I concur with her on the need to acknowledge how violence has splintered everyday life in the OPT and yet at the same time worked itself so deeply into it that violence itself has become ordinary. Toward the end of the chapter I shall use Das’s writing more explicitly to ponder the experiential difference between mourning and grief in the face of the two different kinds of conjugal loss I describe here.

L O S S I N PA L E S T I N E

Historically, the occupied territory is a highly problematic site for understanding loss. A brief historical outline will be in order here to convey how the unsettled national boundaries in the area are interlaced with the violence of everyday life in Palestine. In one of her recent essays, Das (2010) argues that the way in which events are told and retold is intimately linked with the construction of people as ethical subjects—in this case, national subjects. Thus, the way in which a given narrator relates the history of Israel and the Palestinians gestures at the kind of ethical being he is striving to be in the context of the

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conflict. The New Israeli Historians demonstrate with meticulous care that the Arabs did not, as is generally assumed in earlier Israeli accounts of this history, voluntarily leave the areas that are now part of Israel, but rather that they were forced out by the Israeli army (Pappé 2004, 2006). In 1947, the newly formed United Nations devised its so-called Partition Plan for Palestine, which allocated 56 percent and 42 percent of Mandate Palestine to the area’s Jewish and Arab populations, respectively. On May 14, 1948, David Ben Gurion, head of the Jewish Agency and de facto leader of Palestine’s Jews, proclaimed the State of Israel. In the war that ensued between Israel and Arab forces from five neighboring countries—known to the Israelis as the War of Independence and to the Palestinians as al-Nakba (the Catastrophe)—Israel claimed the territory that makes up present-day Israel excluding the occupied territory—in total, 78 percent of Mandate Palestine—with Egypt occupying the Gaza Strip and Jordan occupying what is today known as the West Bank, with the alleged aim of founding a new Arab state: Palestine (Pappé 2004). In the so-called Six-Day War, in 1967, Israel gained control of the Gaza Strip and the West Bank, which it has occupied ever since. The so-called Oslo Accords of 1993 marked an attempt— albeit a highly disputed one—to settle the conflict between Israel and the Palestinians. Emblematic of the enduring temporariness of the conflict is the official name of the Oslo Accords: “Interim Agreement on the West Bank and the Gaza Strip or Israeli-Palestinian Interim Agreement” (Pappé 2004). The uncertain character of life lived in the OPT may best be described as a “nonlinear permanency” in the sense that it does not move toward a resolution, nor is the occupation any longer understood as a temporary state of affairs (Kublitz 2013). This permanency of latent conflict makes it necessary to think of violence not as a discrete event, or as an interruption of the ordinary, but as an essential part of it. More specifically, I want to convey the idea that while violent events do indeed occur in the OPT, they tend to be concentrated around certain periods, such as Israeli military incursions. Such violence took place, for instance, during the intifada al-awwal, the intifada al-aqsa, and most recently operation “Protective Edge” in Gaza during the summer of 2012. As poisonous as these acts of explicit violence are, they often hide the permanent structures of violence that have been set up as part of the security apparatus of the Israeli state, which requires most Palestinians to confront, negotiate, and work around Israeli bureaucratic procedures (L. B. Segal 2013). Palestinians face ongoing restrictions on mobility and live under the constant, almost default suspicion of terrorism (Kelly 2006, 2007). The deformation of most ordinary activities through the constant need to negotiate the Israeli military and police presence seems extraordinary from the outside, but to Palestinians in the occupied territory it has become part of ordinary, everyday life (Kelly 2009; L. B. Segal 2013). Since 1967, seven hundred thousand Palestinians have been incarcerated in Israel (PASSIA 2008, 331). As such, most Palestinians have a family member who is or has been imprisoned in Israel. Palestinian detainees are referred to by the term al-asra’ (Nashif 2008), and according to the Israeli organization B’Tselem, 5,609 Palestinians were incarcerated in Israeli prisons at the end of February 2015 (B’Tselem 2015). Two categories—

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aš-šuhadâ’, the martyrs, or those who have lost their lives in the conflict between Israel and the Palestinians; and al-asra’, the detainees—appear at the heart of Palestinian narratives of suffering, victimhood, and heroism (see Allen 2007; Nashif 2008; Khalili 2007). The majority of aš-šuhadâ’ and al-asra’ are men. In 2007 there were 104 female detainees in Israeli prisons, and among the 4,791 casualties sustained between September 2000 and December 2008, 142 were female (PASSIA 2008, 331). The gendered division of victimhood is thus fairly clear (for comparison, see Massad 1995). Elsewhere, I have described how the sentiments expressed in both public and private realms around the figure of the martyr are much more intense because the martyr falls within a culturally understood frame of heroic death—whereas sentiments around the figure of imprisoned detainees are hard to fit into agreed categories of representation (Buch 2010). Some scholars have argued that Palestinian narratives of suffering are represented in similar terms across personal accounts—that they lack individuality of expression. Lori Allen, for instance, argues that NGOs in the occupied territory have evolved a common language for representing the plight of the Palestinians as unmediated, raw, human suffering in an attempt to make Western audiences aware of the sheer weight of their suffering and to make a case for Palestinians to be included in the human rights category of an individual with a right to integrity. Allen (2009, 162) terms this form of representation “the politics of immediation.” I would add that this discourse takes its importance from the context in which the very humanity of Palestinians is called into question on the grounds that their forms of politics fall outside the realm of statesanctioned and thus to a large extent legitimate violence (Das 1995). The deceased body in the form of the martyr’s displayed corpse then becomes emblematic of this discourse by way of its displaying unintentional victimhood (Khalili 2007, 114). In this chapter, however, I focus less on the victimhood of martyrs and detainees than on widows’ and wives’ experiences of the ways in which loss constitutes conjugal life in the West Bank. A martyr’s continuing presence among his bereaved family is secured via objects, memories, and sensory perceptions. For the widows I spoke to, the husband’s absence from their lives was certain and unequivocal. Although martyrdom brings the martyr back from the dead by granting him eternal life, thus giving him a presence in the lives of the bereaved, this presence is definitive and thus distinct from the unsettled presence of a ghost. Ghosts, W. G. Sebald writes, are caused by an excess of grief that haunts everyday lives (as cited in Carsten 2007, 10). In contrast, the martyr, who is both dead and simultaneously present, lets his relatives reorganize their lives without him, which, according to Freud, is the parameter of an accomplished process of mourning (Freud [1917] 1957). To the widows I met, a martyr’s presence in their lives was not experienced as a ghostly presence.1 This is because there is a fully developed repertoire of religious vocabulary within which the death of a Palestinian martyr can be placed and which makes the death definitive (N. Johnson 1982, 77) As writes Talal Asad, this should be seen in the light of martyrdom in Islamic theology not being a sacrifice, for its literal meaning is an act of witnessing (2007). This meaning of the term may partly explain why

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Palestinians often refer to themselves as a collective of aš-šuhadâ’; they testify collectively to the violations brought upon them by the Israeli state. Meanwhile, my interlocutors also invoked aš-šuhadâ’ (“martyrdom”) as a religious sacrifice in everyday conversation among each other and with me. The fact that the meaning of aš-šahīd extends beyond a form of national sacrifice allows us to understand the pivotal difference between aš-šahīd and al-asīr and therefore also the difference between being the relative of a martyr and of a prisoner, respectively. Elsewhere I have suggested that other than a question of the nature of one’s national sacrifice, this difference is a question of temporality (L. B. Segal 2013). It may hinge in part on how the circumstances of martyrs’ widows and prisoners’ wives diverge with regard to the duration of their husbands’ absence (Buch 2010). Absence in the form of permanent loss is markedly different from absence that is supposedly temporary, lasting in principle as long as the prison sentence. Therefore, in the public discourse losing a son, a father, or a husband to martyrdom is a loss that has its place in the vocabulary of naming and acknowledging the consequences of the occupation. Whether this also applies on the emotional level varies from woman to woman. Detainees’ wives, by contrast, live with an absence that is perceived in public discourse to be temporary, irrespective of the fact that it may last for the rest of the women’s lives. Because of the hope that, with a peace agreement with Israel, all Palestinian detainees in Israeli detention will be released, the issue of captivity potentially remains within the realm of the temporary, no matter how many life sentences the detainee in question has been given. The absence of the detainee is marked by what it is not—namely, death. Part of the ambiguity resides in the fact that a detainee’s wife’s life is not supposed to change, or if it does, then only for the better, because of the honor of being married to a hero. Despite this, nothing stays the same: previously treated as a respectable housewife, she becomes suspended between the stability associated with being married and the potentially dangerous lack of restraint caused by her husband’s absence. In my understanding of this difference I refer to Das’s (1998b) reading of Wittgenstein on the manner in which forms of expression grow out of the shared criteria honed within forms of life. The notion of standing language gives us a clue about the lives that can be voiced and acknowledged because they participate in the shared criteria that grow within a form of life. In the OPT, however, there seem to be kinds of violence and loss whose consequences are unable to be expressed within the standing languages available within a particular form of life (see also L. B. Segal 2014b). Thus, the loss that a woman experiences because her husband has died the death of a martyr can be voiced because of the availability of collectively shared forms of mourning through which a martyr’s death is remembered. In contrast, the feelings of loss experienced by a woman whose husband is imprisoned cannot be easily verbalized since the figure of the prisoner is neither fully present in the life of a woman, nor fully absent. (See L. B. Segal 2014a for an elaboration of this point.) The question looming large in this chapter is why, then, there is no such place in language for experiences like this.

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The two following examples of conjugal loss allow us to interrogate the intricate differences and similarities between losses that can and cannot be mourned and thereby point toward the grammar of mourning among West Bank Palestinians.

LUMA: RASH, MADNESS, AND MOURNING

Luma had a rash on her stomach. She complained about it every time my assistant, Mayy, and I saw her. Since we could neither see nor diagnose the rash, we urged her to see a doctor. Luma did not go. Paying a martyr’s widow the respect she was due, Mayy had kindly proposed that her own father, a famous physician in this particular West Bank town, have a look at it. When a few weeks later Luma had still not visited Mayy’s father’s, we told her one Friday morning that instead of coming by for a cup of tea as usual we would pick her up and drive her to the clinic. Luma hesitated, but got into the cab happy that two women were escorting her; that way, neither her neighbors nor her family could witness her disappearing into a car with an unknown driver. We entered the doctor’s practice, naturally quiet and empty on a Friday. Luma insisted that Mayy and I join her in the consultation room. We were all quiet, and the doctor gestured at Luma to lie down and lift her dress so that he could see the rash. There was nothing to see. Luma, however, insisted that it itched, and he prescribed some cream (perhaps cortisol). Luma gratefully thanked the doctor, and we drove back to her house, where we drank coffee and watched a video recording of her daughter’s fifteenth-birthday party. Luma is a physically imposing and stentorian woman. Her laughter does not go unnoticed, and when she cries her tears are, as she makes clear, a sign not only of her sorrow but also of her achievements in coping with her situation as the widowed wife of a martyr and the single mother of four teenage children. It is through tiny everyday gestures that Luma conveys how she has managed to thrive in adverse circumstances. For instance, when we first visited her house, she made a point of offering my assistant and me two different kinds of homemade cake rather than shop-bought cakes from just next door. Similarly, she threw a fancy party, inviting her nieces and female acquaintances, when her daughter turned fifteen. One of the most important things about the party was that it later allowed her to show and narrate at length a video recording of it to willing (or unwilling) guests. From conversations with her and with women she knew both directly and indirectly, it is clear to me that her gestures of both resilience and lamentation are seen by others, and indeed by Luma herself, as those of an understandably nervous woman. The pain associated with the violent death of her husband hovers over Luma’s life and underwrites her expressions of both mourning and coping. In 2002, at the height of intifada al-aqsa, Luma’s husband died in an air raid in the vicinity of their house. Luma heard the bombing, aware that her husband was its most likely target. Though it is now ten years since his death and she could remarry without any social censure, as other widows have done, Luma refuses to do so.

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Whenever she narrated her husband’s death, Luma’s voice rose to a higher pitch; her face and cheeks would take on color, and one could almost feel the adrenaline coursing through her body. Talking about his death in its minutest details, Luma would recount how she went through stages of fear, anticipation, and knowledge, and then absolute desolation when she was finally certain that her husband had been killed. Her narrative was both a way to convey the sorrow of losing her husband in culturally appropriate terms and of reliving her feelings for him then. If we think about her life story, we can get a sense of how her husband’s death enabled her to reconnect with a certain “normality” in her life. In her account, the twelve years of their relationship up until his death in 2002 oscillated between events of happiness, like their marriage and the birth of their children, and events of imprisonment. Interestingly, she described his first imprisonment as just as grievous for her life as his death ten years later. What stands out in her narrative is the notion that a year after her husband’s death, life once again, or perhaps for the first time, became “normal.” This framing is hardly surprising, given the violent ups and downs of her past. Her way of visualizing her life, however, allows us to ponder what loss and mourning are to Luma. One conclusion might be that her sorrow is still raw, even though five years had passed since her husband’s death when I first met her. This interpretation relies on the idea that talk of normality hides the fact that she is unable to express her grief. Another possible interpretation might be that Luma’s feelings of loss follow Freud’s classic linear description of mourning, in which loss slowly recedes into the background and life is inhabited and regained anew each day (Freud [1917] 1957). Even if we were to assume that the linearity of Freud’s understanding of loss applies to Luma, it is still necessary to look beyond this and ask, How does Luma’s life as a widow allow her to express certain affects that other women, who are wives of detainees, cannot express? While her life now goes on and so falls within what we can think of as normality in Palestine, her agitation and her arousal seemed a way for her to make use of the legitimate space allowed a widow mourning her martyred husband to express the sensuality of the conjugal relation. Moments of remembering performed as mourning allow Luma to embody, however temporarily or fleetingly, areas of womanhood other than those of being a mother, a daughter, and a dutiful daughter-in-law in the family of a martyr. Luma’s performances were intense and could as such have placed her in the local category of moassa’abeh. The notion of moassa’abeh describes an emotional state somewhere along the spectrum of anger, hot temper, and nerves. As a category of emotion, moassa’abeh is thought to occur as a consequence of both everyday stressful chores like caring for children and physical conditions that hamper one’s activities; Luma’s rash is a relatively minor example of this. Moassa’abeh is, however, also used to describe the consequences for people who have suffered, for instance, loss, imprisonment, or humiliation through violent encounters with the occupying forces. The emotional category of moassa’abeh thus figures as a container of a wide array of feelings, traits, and mental states, ranging from a nervousness of character to the psychological consequences of the

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occupation that in professional language would be characterized as mental disorders. This I encountered at a counseling center in Ramallah where I carried out part of my fieldwork. This center offered psychosocial counseling to survivors of violence and their relatives. Here, the term moassa’abeh covered diagnoses such as posttraumatic stress disorder, obsessive-compulsive disorder, anxiety, depression, and even schizoid states. As regards the latter, it became clear that moassa’abeh is also a way of naming that which cannot be named—that is, that someone suffers from a mental disorder, which is a very sensitive issue in the OPT. As one of my acquaintances, a doctor, left-wing activist, and founder of a pivotal health NGO in the West Bank, told me, Palestinians may have availed themselves of many psychosocial interventions since the second intifada, but mental illness (or “madness”) was still a cultural taboo and hence difficult to diagnose and treat. Accordingly, the term moassa’abeh sometimes stands in for anything that carries the taint of madness. This was clear when I studied the journals of ex-detainees and their relatives in order to learn why people are referred to a place that offers psychological services. People would complain that they or their relatives are moassa’abeh, yet the diagnostic category that they become placed in by their therapist may well be that of a psychiatric disorder. This I also encountered during a research project in Gaza in 2005. In a collaborative interdisciplinary research project between Dignity: The Danish Institute against Torture (formerly RCT) and Palestinian psychologists in Gaza, twenty male exdetainees were sampled to participate in a study on the impact of psychotherapy on their symptoms of different psychological disorders. Besides the ex-detainees themselves, we also interviewed their relatives. I interviewed these relatives, in particular the ex-detainees’ wives, first. The women complained that the ex-detainees were, and stayed, moassa’abeh after returning from prison. Upon actually meeting the ex-detainees themselves, I was startled to learn that their state of mind was permanently other than moassa’abeh—many of them suffered severe psychiatric disorders like schizophrenia and related schizoid syndromes. When confronted with this, their relatives would say, “A’di (“normal”), he has been to prison.” Further, when I asked the clinical staff about the state of a particular ex-detainee, their response would still be that he was perhaps very nervous and that this might be due to the interview situation rather than the psychiatric diagnosis written in the client’s journal. The reason for this is that, whereas behavior that is described by people as moassa’abeh falls within the acceptable, behavior that is diagnosed as a mental disorder or is rumored to be “mad” is less so. Naming the behavior of a relative as moassa’abeh rather than mad or with a psychiatric diagnosis may therefore figure as a gesture of care that alludes to how anger and nervousness can be contained in the social fabric whether or not that person’s behavior transgresses the thin line between moassa’abeh and majnuuneh—madness. So how does this relate to Luma, her loss, and her rash? Juxtaposing the continuing rawness of her loss with her focus on her rash could be interpreted psychosomatically in the sense that, rather than working through the loss of her husband, she was preoccupied with the rash. This, however, should be read in the context of how losing a close relative

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to violent death is publicly recognized as a harrowing experience. In other words, public expectations contained and encompassed Luma’s emotional responses to her loss. That the standing language for acknowledging loss might not be commensurable with her experience may be seen in her preoccupation with her seemingly absent rash. Also, at times, she voiced how she herself felt that she was going mad, yet even when I heard other martyrs’ widows talk about her, they would say, “Moassa’abeh, sure, but how could she be anything else?” I am not suggesting that Luma is in any sense mad, but I do think that by suggesting to us that she sometimes felt she might be, she was probing the limits of the language of moassa’abeh, seeing just what could be voiced and what could not. Judging from how people in the community (her former therapist, my assistant, and her family) spoke of her, whatever kind of emotional response she might have had in the wake of her husband’s violent death appeared to have the possibility of coming forth in the language of moassa’abeh. Emblematic, however, of the excess of emotions that Luma herself termed as madness was the rash that was there, itching violently yet nowhere to be seen by anyone other than herself. Luma’s case allows a glimpse of the kind of emotions that can be voiced within the standing language available to acknowledge and console a widow who has lost her husband to violent death. The ways in which Luma’s testing of the reach of this language was contained by those around her (her family, acquaintances, and other martyrs’ families) convey the practices of care the community showed toward Luma. The fact that no one picked up on Luma’s highly strung way of being, her inexplicable rash, and her partial confession that she felt like she was going mad shows us both how used the Palestinians are to accommodating loss caused by the conflict (in the sense that people know how maddening loss can be) and also that no matter how mad someone feels as she endure her loss, it does not count as having gone mad—majnooneh. Tentatively I wish to put forward the idea that we think of the distinction between moassa’abeh and majnooneh as one of outside versus inside: Luma’s narrative shows us how public and religious notions of mourning a martyr may in fact go some way toward consoling a widow for the loss of the spouse due to the collective understanding of how shattering such a loss may be. The fact, however, that when Luma is on her own or in the company of people whom she trusts she admits not only to the feeling of loss but also that she feels as if she sometimes looses her grip on herself alludes to the failure of these very institutions to fully render her loss meaningful. How the inside and the outside are, in the words of Das, “stitched together” (Das 2007, 62) in the case of Luma shows us that even loss that is contained within the category of martyrdom still exceeds what the collective acknowledgement of heroic death has to offer.

YA R A : FA I L I N G TO K E E P G R I E F AT B AY

Yara is the wife of a politician who is serving a life sentence in Israel. He has been detained since 2001 and was put in isolation at the time of my fieldwork. In Yara’s narrative of her

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loss, what stands out is how the history of the Palestinian resistance movement and its varying intensities are knitted into the account of her own emotions about her husband’s imprisonment. As she recounted the early phase of their love: “He told me that his life wouldn’t be easy . . . [that] it might be a life where one year later, he would be in jail or be killed, and that he was not going to stop working in politics. . . . He asked me if I could handle all that. At that time, political men had a highly respected position among Palestinian people and society. So that’s why I was really in love with him. I thought it would be enough if my name were to be related to his name. I didn’t want to think further than that.” Later, Yara began to relate how doubt had slowly but persistently invaded her earlier conviction to devote their lives to politics: “I couldn’t handle the situation anymore. Ba’ha’ didn’t stop working for politics, but I stopped. I was thinking, ‘Why are you leaving your house and your wife and your kids? Who are you doing this for? No one cares anymore.’ ” She has accepted the stark fact that her husband will most likely never be released from prison. What Yara has lost is not only her husband but also a whole mode of what their being together meant for her. This statement is true in a double sense. First, her husband now figures in her everyday life only as an absent presence. Second, and perhaps even more important, they are not a political couple any longer. Their paths have split: he is still fighting for a cause, but for her and her family this cause has lost its meaning. Yet Yara herself speaks with a divided voice. That she is still active in politics and loyal to the cause for which her husband is in prison comes through powerfully when she is invited to speak in public, both within Palestine and outside. I give a description of one such occasion, when a campaign for the release of political prisoners was being launched. Despite the organizer’s expectations, very few people had turned up for the meeting. Yara began her talk by emphasizing that she was speaking in order to raise awareness of the conditions of all Palestinian prisoners and not only for her own husband. She spoke about the numbers of people held in detention, their ordeals, and then illustrated the general issues with examples of difficulties faced by her husband in prison and how she had not been allowed to visit him for many years now. When the floor opened for questions from the audience, a woman from a human rights movement asked if she would say something about the conditions faced by family members of the prisoners. Yara recounted the humiliations many families faced when visiting their relatives in prison and how they moved back and forth between Palestinian and Israeli human rights lawyers for years on end in the hope that yet another hearing might lead to the release of a loved one. When a woman asked the more personal question “What about you?” Yara’s voice suddenly fell. She was quiet for a while, took a deep breath, and then spoke in a different tone of voice from what she had used to discuss the Palestinian cause and the prisoners’ issues. She could not hold back her tears when she told the audience about her daughter’s psychological disorder and the difficulties she was having in arranging her marriage. Yet neither the activists in the solidarity movement nor the members of the audience seemed interested in this aspect of her story. Yara somehow spoke to an audience

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that was unable to take in the full extent of her experience—that she, the most heroic wife of them all, expressed doubt about the worth of the struggle. Her experiences were considered relevant only to the extent that she could represent the brave but suffering wife of a prisoner and thus contribute to the political cause. Yara was unable to express her own anguish and resorted to the suffering of her daughter, for if she were to allow herself to express her ambivalence toward her husband’s dedication to the cause of Palestine and its consequences for their own lives, she would be considered as one who had betrayed her husband and the cause he stood for. It is not that Yara’s predictament is completely ignored. For instance, the leader of the company where Yara’s daughter works told me that they do what they can in the workplace to support her (the daughter), both as the daughter of a heroic detainee and as a human being suffering because of the periods of imprisonment that both her father and her mother have been negotiating since her early childhood. Yara’s daughter was only a few months old when her mother was detained in Israel for a couple of months. When Yara told me about that on a rainy November day in Ramallah, the times she went quiet were when she spoke about her children and the effect their father’s political activism may have had on them. The idea of mourning might not be the best way to characterize Yara’s feelings. We might instead think of grief as the emotion that is held in private but consistently blocked from being given public acknowledgement. Karen Brison and Stephen Leavitt write that there seems to be a general agreement in anthropology that bereavement is best understood as a “core grieving process” that is then shaped according to cultural models of mourning (Brison and Leavitt 1995). I would argue, though, that we can use Yara’s case to calibrate this understanding: violent loss in Palestine is often described as a human experience that is countered by the available cultural idioms of sumoud (“endurance, steadfastness”) and the value of supporting the collective struggle for statehood, also at the cost of losing loved ones (Sayigh 1993; Jean-Klein 2001; Peteet 1991). If we follow Brison and Leavitt, then sumoud would be the home in language to contain and offer consolation for both Luma’s loss and Yara’s grief. Even with large political campaigns for the prisoners’ cause and impressive parties on the occasion of a prisoner’s release, however, there is no publicly supported realm of mourning that could be called upon to express the profound loss of belief in the political projects of resistance that once gave meaning to the lives of Yara and her husband as a couple. This is what I mean by the loss of politics. Rather than being limited to the lack of hope or belief in the materialization of Palestinian statehood, we may think of the loss of politics as a moment of skepticism in the history of the Palestinian struggle for becoming. It is against this background that in current Palestine there seems to be no language for Yara’s personal grief, thereby questioning Brison and Leavitt’s argument. Rather, I see Yara’s loss in resonance with what Das terms an experience that language has difficulty reaching (1998, 183). Wittgenstein’s premise that language is fundamentally social is relevant here since language is both about finding the appropriate words and about the possibility of finding an ear that can listen (Das 1998b). As writes

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Kelly on the failure of British judges to listen to claims about torture in cases of asylum seekers, the claimants’ words are doubted because the judges themselves would not know how to provide proper proof of their suffering were they in the asylum seekers’ place (Kelly 2012). The inability, then, of Yara’s audience to listen may be due to their own quiet acknowledgment that had they been in her place, sumoud would go only part of the way in offering consolation for the grief and doubt in the future life of one’s children that the occupation and its twin of heroic struggle for statehood had brought upon them.

G R I E F, M O U R N I N G , A N D T H E L O S S O F P O L I T I C S I N P A L E S T I N E

The cases of Luma and Yara illuminate how the death or indefinite absence of a spouse suffuses all relationships—so that the sadness that women express over such loss is about losing a whole way of being in the world. As the event of the loss of a husband unfolds over time, it looses its place as the definitive event of sadness in a marriage in contemporary Palestine. Yet there are important differences in the cases of Yara and Luma. For Yara, the losses she has had to endure are not easily expressed or recognized within the repertoire of stories of loss that women tell in Palestine. Thus one might say that they lend themselves niether to the process of mourning nor to the relief that mourning can potentially bring. To the martyr’s widow Luma, the languages of mourning such as her lamentations allow a space in which she can give expression to her love and her desire for the husband who died prematurely. Thus she can both inhabit and admit to feelings of love and desire in a way that is socially accepted insofar as these feelings are directed toward her deceased husband. In Yara’s case there is no available language for expressing the grief that invades her being, for it includes not only the loss of her husband but also the doubt in the roles she has filled and still does fill in the Palestinian political community: Yara as a female exdetainee and the proud wife of a hero. We saw the divided self in the sense of how she publicly continues to speak on behalf of the Palestinian cause while also reflecting on what her daughter and she have had to endure at the cost of her famous husband’s heroic imprisonment. For the Palestinian population as a whole that continues to bear the daily hardships that result from the imprisonment of such a large number of men, the prisoners’ problem is too sensitive to allow for any story to emerge other than that of equally heroic endurance. This is why the audience at her talk was silenced by Yara’s account of her personal experience of her husband’s imprisonment. In private conversations Palestinians will tacitly agree now that the golden era of Palestinian resistance to the occupation is but a faint memory from the first intifada. The language of resistance, however, still figures as representing collective hope for Palestinian freedom from occupation. People staying in Palestine have no option but to act as if they still believed in a collective future, but the worlds with which collective hopes are narrated are now emptied of life (see L. B. Segal 2014a).

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The need to keep reiterating the Palestinian national narrative even though it is no longer seen as believable makes it hard to acknowledge what has happened to the wives of detainees. The psychological effects of imprisonment both directly and derivatively, then, tap into the well-known register of madness. Whereas the audience of Yara’s revelations about her daughter’s psychological disorder was not able to acknowledge the extent to which the resistance struggle causes human hearts and minds to split, the people who live through these experiences on a day-to-day basis understand these costs only too well. Once at a small gathering in my flat in Ramallah with three friends, all of whom have husbands serving lengthy prison sentences, one interlocutor, Amina, told us about how nervous her husband was on the occasion of her last visit. In this atmosphere of casual women’s talk she ended her account by saying, “Kulhum majaniin, bnhibhum”— meaning “They [the prisoners / our husbands] are all mad, we love them.” Her words, I would argue, display the split self that is eclipsed in the grandiose political speeches made in national and international arenas. Amina, Yara, and other women in the same situation perhaps inhabit a most intricate space. These women experience the wound at the heart of the conjugal relation but must go on loving and supporting their respective husbands in small everyday gestures, such as paying visits to the prisoners, writing letters, sending photos, and engaging in those acts of caring that make up the everyday for the women and their children. Amina’s words crystallize the tragic recognition that the occupation is supposed to foster an endurance on the part of those who suffer its consequences even though what it causes is madness. Despite Amina’s lighthearted tone, all the women in my living room that day knew the pain of admitting that living as the wife of a detainee through a fourteen-year stretch of a spouse’s imprisonment deadens the heroic impulse. Her words were but one instance of the murmured conversations within families and among friends in which it is said that the long detentions of so many may turn out to have been simply a debilitating loss of time and sanity for the prisoner himself and his relatives.

CONCLUDING THOUGHTS

How can these two cases of Palestinian women’s contradictory emotions on the death or imprisonment, respectively, of their husbands push our thinking further about loss, mourning, and grief? Let us first ask, What work does language do here? There is an elaborate repertoire of narrative styles, laments, folk song, poetry, and performance of bodily gestures through which mourning (including the mourning that is tied to a political cause) can be articulated in Palestine. Why are these collective forms of expression found wanting in the cases of detainees’? As stated, it seems to me that the problem hinges on the question of temporality. Although the death of a significant other is a grievous event in all cases, it tends to be contained within a bounded period of time. The process of mourning the dead is ritually structured, and although the personal time of grieving is not identical to the ritual time, the latter sanctions a societal recognition that

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the period of mourning has come to an end (Buch 2010; L. B. Segal 2014a). Henrik Vigh has suggested the term chronic crisis to designate societies in which the frequency of violence has made it ordinary (Vigh 2008). The word crisis, however, signals a temporal horizon that, however normalized, will come to an end. To think of the case of the detainees’ wives through the notion of crisis seems to me to understate the potential permanency of their temporal horizon. Finally, I wish to bring in Das’s recent work about a salient aspect of loss being the fact that human life goes on, even in the face of harrowing loss (Das 2011). Discussing Stanley Cavell’s reading of Emerson’s account of the loss of his son, Das writes that when Emerson says that grief has taught him nothing, he is alluding to the absence of any publicly available forms through which consolation could be sought. In the case of the Palestinian women figuring in this chapter, it might have been possible for them to frame their suffering in religious terms such as their travails being a test from God or political sacrifices. In public speech as well as in everyday talks with acquaintances, women will in fact often use these languages. As Allen’s (2009) analysis with which I started indicates, the politics of immediation permeates Palestinian narratives about loss. I found, though, not only that it was easier for the widows of martyrs to present their suffering in these terms than it was for the wives of prisoners to use these available vocabularies, but also that mourning did not contain the full extent of the grief, even that of the widows of martyrs. I wonder whether anthropology, too, lacks the vocabulary with which to talk of the experiences of the wives of Palestinian prisoners. As stated earlier, we can talk rather easily about the social arrangements through which life is restructured for these women (cf. Brison and Leavitt 1995), but we have not honed a language to talk about their experiences when such social arrangements fail to do their work. One possible explanation would be to follow Wittgenstein’s claim that language can never be truly private, since it is at the outset a part of sociality (see also Geertz 2000). Yara’s situation, and the situations of many others, are politically precarious, and thus their grief and loss of belief in the political project are removed from the narratives that circulate in the public realm— narratives that at the outset appear to include the entire scale of affliction brought upon the Palestinians by the military occupation. There is, however, a further aspect of how the experiences of loss of martyrs’ widows as well as detainees’ wives figure differently in relation to the standing languages of mourning. This is the painful element of betrayal that stays in the atmosphere for the wives of detainees once the personal cost of engaging in the struggle becomes weightier than the value accorded to supporting heroically the Palestinian collective. Betrayal, writes Vincent Crapanzano (2011), is the more or less intentional loss of belief in the “we” as a vantage point. And since Palestinians understand the objective of the military occupation to be to splinter the Palestinian population and never allow it to become a national “we,” voicing doubt in the worth of the struggle amounts to admitting that the occupation has won. This doubt, I argue, is part and parcel of the grief felt by prisoners’ wives and the loneliness that has to follow it in order to endure. The weight of this doubt is best illuminated by Das’s

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argument that, with abhorrent violence, one consequence is that we reach the limit of a form of life (1998, 182). Therefore, this attempt at understanding the grammar of mourning and its limits in the OPT contains the recognition that the failure to acknowledge the grief of prisoners’ wives perhaps equals the unbearable acknowledgment of the doubt that the Palestinian project can find a future in language.

N OT E S

This research was made possible by the Carlsberg Foundation and the Consultative Committee for Development Research (FFU) in Denmark. First of all I want to thank the women figuring in this chapter for sharing and wording their lives with me. Second, I am immensely grateful for the careful and constructive comments by Veena Das and Clara Han. You have been remarkable as editors and helped the chapter flow when I could not push its argument any further. For copyediting the chapter Matthey Carey and Rachel Taube have both been very helpful. As always the invisible hand of Andrew Brandel makes all the difference. 1. Though South Africa’s struggle against apartheid and the Palestinian struggle against Israel are often compared (cf. Farsakh 2005), the widows of Palestinian martyrs—contrary to Ramphele’s (1997) analysis of the widows of South African freedom fighters—are not ambiguous figures.

REFERENCES

Allen, Lori. 2006. “The Polyvalent Politics of Martyr Commemorations in the Palestinian Intifada.” History and Memory 18(2): 107–38. ———. 2008. “Getting by the Occupation: How Violence Became Normal during the Second Palestinian Intifada.” Cultural Anthropology 23 (3): 453–87. ———. 2009. “Martyr Bodies in the Media: Human Rights, Aesthetics, and the Politics of Immediation in the Palestinian Intifada.” American Ethnologist 36 (1): 161–80. ———. 2012a. The Rise and Fall of Human Rights: Cynicism and Politics in Occupied Palestine. Stanford, CA: Stanford Studies in Human Rights. ———. 2012b “The Scales of Occupation: ‘Operation Cast Lead’ and the Targeting of the Gaza Strip.” Critique of Anthropology 32 (3) 261–84. Asad, Talal. 2007. On Suicide Bombing. New York: Columbia University Press. Austin. J. L. (2009) 1962. How to Do Things with Words. Oxford: Oxford University Press. B’Tselem. 2015. “Statistics on Palestinians in the Custody of the Israeli Security Forces.” Accessed April 29, 2015. www.btselem.org/statistics/detainees_and_prisoners. Buch, Lotte. 2010. “Derivative Presence: Lives and Loss in Limbo in the West Bank.” In An Anthropology of Absence: Materialisations and Transcendence of Loss, edited by Mikkel Bille, Frida Hastrup, and Tim Flohr Sørensen, 83–97. New York: Springer. Carsten, Janet, ed. 2007. Ghosts of Memory: Essays on Remembrance and Relatedness. Malden, MA: Blackwell. Crapanzano, Vincent. 2011. The Harkis: The Wound That Never Heals. Chicago: University of Chicago Press.

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Das, Veena. 1998a. National Honour and Practical Kinship: Of Unwanted Women and Children. In Critical Events. An Anthropological Perspective on Contemporary India, 171–95. Delhi: Oxford University Press. ———. 1998b. “Wittgenstein and Anthropology.” Annual Review of Anthropology 27:171–95. ———. 2010. “Engaging the Life of the Other: Love and Everyday Life.” In Ordinary Ethics: Anthropology, Language, and Action, edited by Michael Lambek, 376–99. New York: Fordham University Press. ———. 2011. “Time Is a Trickster and Other Fleeting Thoughts on Cavell, His Life, His Work.” MLN 126 (5): 943–53. Derrida, Jacques. 1996. The Gift of Death. Chicago: University of Chicago Press. “Detainees and Prisoners: Statistics on Palestinians in the Custody of the Israeli Security Forces.” 2013. B’Tselem, February 20. www.btselem.org/English/Statistics/Detainees_and_ Captives.asp. Farsakh, Leila. 2005. “Independence, Cantons, or Bantustans: Whither the Palestinian State?” Middle East Journal 59 (2): 230–45. Fassin, Didier, and Richard Rechtman. 2009. The Empire of Trauma: An Inquiry into the Condition of Victimhood. Princeton, NJ: Princeton University Press. Freud, Sigmund. (1917) 1957. Mourning and Melancholia. London: Penguin Books. Geertz, Clifford. 2000. Preface to Available Light: Anthropological Reflections on Philosophical Topics, x–xiv. Princeton, NJ: Princeton University Press. Goodfellow, Aaron. 2008. “Pharmaceutical Intimacy: Sex, Death, and Methamphetamine.” Home Cultures 5 (3): 271–300. Jean-Klein, Iris. 2001. “Nationalism and Resistance: The Two Faces of Everyday Activism in Palestine during the Intifada.” Cultural Anthropology 16 (1): 83–126. Johnson, Nels. 1982. Islam and the Politics of Meaning in Palestinian Nationalism. London: Kegan Paul International. Johnson, Penny. 2006. “Living Together in a Nation in Fragments.” In Living Palestine: Family Survival, Resistance, and Mobility under Occupation, edited by Lisa Taraki, 51–102. Syracuse, NY: Syracuse University Press. Johnson, Penny, Lamis Abu Nahleh, and Annelise Moors. 2009. “Weddings and War: Marriage Arrangements and Celebrations in Two Palestinian Intifadas.” Journal of Middle East Women’s Studies 5 (3): 11–35. Kelly, Tobias. 2006. “Documented Lives: Fear and the Uncertainties of Law during the Second Palestinian Intifada.” Journal of the Royal Anthropological Institute 11 (1): 89–107. ———. 2007. Law, Violence and Sovereignty among West Bank Palestinians. Cambridge: Cambridge University Press. ———. 2009. “The Attractions of Accountancy: Living an Ordinary Life during the Second Palestinian Intifada.” Ethnography 9 (3): 351–76. ———. 2010. “In a Treacherous State: The Fear of Collaboration among West Bank Palestinians.” In Traitors: Suspicion, Intimacy and the Ethics of Statebuilding, edited by Tobias Kelly and Sharika Thiranagama, 169–87. Philadelphia: University of Pennsylvania Press. Kelly, Tobias, and Sharika Thiranagama. 2010. Traitors: Suspicion, Intimacy and the Ethics of Statebuilding. Philadelphia: University of Pennsylvania Press.

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———. 2012. “Sympathy and Suspicion: Torture, Asylum, and Humanity.” Journal of the Royal Anthropological Institute 18 (4): 753–68. Khalili, Laleh. 2007. Heroes and Martyrs of Palestine: The Politics of National Commemoration. Cambridge: Cambridge University Press. Kublitz, Anja. 2013. “Seizing Catastrophes: The Temporality of Nakba among Palestinians in Denmark.” In Times of Security, edited by Martin Holbraad and Morten Axel Pedersen, 103–21. London: Routledge. Brison, Karen J., and Stephen C. Leavitt. 1995. “Coping with Bereavement: Long Term Perspectives on Grief and Mourning.” Ethos 23 (4): 395–400. Massad, Jospeh. 1995. “Conceiving the Masculine: Gender and Palestinian Nationalism.” Middle East Journal 49 (3): 467–83. Nashif, E. 2008. Palestinian Political Captives: Identity and Community. Abingdon, UK: Routledge. Pappé, Ilan. 2004. A History of Modern Palestine: One Land, Two Peoples. Cambridge: Cambridge University Press. ———. 2006. The Ethnic Cleansing of Palestine. Oxford: Oneworld. PASSIA (Palestinian Academic Society for the Study of International Affairs). 2008. PASSIA Diary 2008: 60 Years Palestine Nakba. Jerusalem. Peteet, J. M. 1991. Gender in Crisis: Women and the Palestinian Resistance Movement. New York: Columbia University Press. Ramphele, M. 1997. “Political Widowhood in South Africa: The Embodiment of Ambiguity.” In Social Suffering, edited by Arthur Kleinman, Veena Das, and Margaret M. Lock, 99–118. Berkeley: Univeristy of California Press. Sayigh, R. 1993. “Palestinian Women and Politics in Lebanon.” In Arab Women: Old Boundaries, New Frontiers, edited by J. Tucher, 175–92. Bloomington: Indiana University Press. Segal, Lotte Buch. 2013. “Enduring Presents: Living a Prison Sentence as the Wife of a Detainee in Israel.” In The Times of Security, edited by M. Holbraad and M. A. Pedersen, 122–40. London: Routledge. ———. 2014a. “Disembodied Conjugality.” In Wording the World: Veena Das and the Scenes of Inheritance, edited by Roma Chatterji, 55–68. New York: Fordham University Press. ———. 2014b. “Why Is Muna Crying? Event, Relation, and Immediacy as Criteria for Acknowledging Suffering in Palestine.” In Histories of Victimhood, edited by Steffen Jensen and Henrik Rønsbo, 179–97. Philadelphia: University of Pennsylvania Press. Vigh, Henrik. 2008. “Crisis and Chronicity.” Ethnos 73 (1): 5–24.

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28 ECHOES OF A DEATH Violence, Endurance, and the Experiences of Loss

Clara Han

Recent social science literature on urban poverty and social inequality in Latin America has emphasized the spectacularity and pervasiveness of violence that has arisen in concert with growing social inequalities during the region’s democratic transition. In studies of what is termed the new violence—affirmed by the key figure of rising homicide rates— social scientists have portrayed low-income neighborhoods as steeped in and largely defined by violence, a cluster of conditions involving urban gangs and criminal networks, forms of police violence, and urban poverty (Arias 2006; Arias and Goldstein 2010; Benson et al. 2008; Koonings and Kruijt 2007; Rodgers 2006; Wilding 2011). In a literature where violence is largely assumed to be immediately knowable and transparent, individual narratives of violent death become constructed around gang loyalties, state abandonment, and stories of revenge (Auyero and Burbano de Lara 2012; Goldstein 2003). In this persistent focus on normative ordering, however, we might appreciate the difficulty of coming to grips with a pervasiveness of death that is real. How might the individuality of death relate to the pervasiveness of death? Does an engagement with this individuality provide a way to recast these dominant narratives of cycles of revenge, thus helping us attune to the everyday endurances in and around violence in low-income neighborhoods? In this chapter, I attend to one woman’s grief and experiences of loss in relation to the violent death of her son in El Zanjón, a low-income neighborhood in Santiago, Chile, under military police occupation.1 In May 2012, I began nine continuous months of fieldwork in this neighborhood, followed by visits in 2013 and accompanied by chats over Facebook and

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Skype. Several months before I met her, Martita’s son, Camilo, was killed by a police functionary during a drug raid performed by the Tactical Reaction Team of the civilian Police Investigations [Equipo de Reacción Táctica, Policia de Investigaciones]. Her youngest of three sons, Camilo was twenty-two years old when he was killed and was expecting the birth of his first child, a daughter, with his girlfriend, who at the time of his death was eight months pregnant. In the early days of my visits with her, Martita recounted to me the pain she experienced on coming into a deep awareness of the reality of her son’s death: “I have begun to live my grief because I realized things that before I did not realize. . . . I became aware of the reality that, whatever I do, no one and nothing will return my son. Nothing. So, that is what has me tormented. I feel mal. The only thing I need is help to help me feel ‘Why live?’ . . . They say that this [grief ] is normal, but I am learning to live it.” In her remark “They say that this is normal, but I am learning to live it,” Martita expresses the sensibility that despite the pervasiveness of death, death—from the perspective of the singular other—does not become normal. Learning to live grief is learning it anew, for each and every death. Let me bring Martita’s words into conversation with the words of anthropologist Veena Das and philosopher Stanley Cavell. In the forward to Das’s Life and Words, Cavell cites a remark of Wittgenstein’s that he (Cavell) “imperfectly, or only intermittently” understands, but that he says Das’s text surely illuminates: “The whole planet can suffer no greater torment than a single soul” (Cavell 2007, xiv). At stake for me in Das’s text is what it helps me hear in Martita’s words: “But I am learning to live it.” We are asked to attune to how every death is mourned, and in so doing to pay attention to how “the same space now marked as a space of devastation” is made into one’s own again (Das 2007, 62). Such an engagement with the singular other, in which we “remain mindful of the projecting character of human existence (Das 2007, 62),” allows us to attend to the possibilities forged in and through loss. In this chapter I ask, What might be the experience of death in a world in which death is pervasive? How do endurance and loss interweave in this context? One of the core arguments of this chapter is that such questions simply cannot be responded to independent of an engagement with the singular other. Listening to grief, in this sense, asks us to listen to the torment of a single soul.

T H E C O N T E X T O F O C C U PAT I O N

Before turning to Martita, let me briefly provide a context for the current occupation. When I began fieldwork in El Zanjón in May 2012, the neighborhood had been under military-police occupation for several years. In 2001, the Chilean Ministry of the Interior enacted a policing scheme called “Barrio Seguro,” or Secure Neighborhood, that focalized intensive policing to sections of poblaciones, or low-income neighborhoods, understood to be sites of drug trafficking and delinquency. Although resonating with the longstanding policies of targeting social programs to geographic territories—such as in the case of programs for extreme poverty—Secure Neighborhood was not initiated on the basis of evidence that demonstrated certain neighborhoods to be foci of drug trafficking

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and delinquency. Rather, it was catalyzed by publicity around the funeral of a young man from La Legua, a neighborhood known for drug trafficking in the media and popular imaginary. A major national newspaper, El Mercurio, covered the funeral in the General Cemetery, at which the aunt of the young man was said to have presented herself to the newspaper as “the queen of pasta base” (a cocaine-based drug) and to have intimated seeking vengeance for the death of her nephew. The story spurred the subsecretary of the Ministry of the Interior to issue criminal charges against this woman for issuing a public death threat and to reassert the rule of law in Chile to the press: “There is no territory in Chile where the rule of law is not in force, and the law of Aunt Nena is not in force in La Legua, the law of Chile is” (“Jorge Correa Sutil” 2001). Intertwined with references to the criminal underworld with terms like hampa (“riffraff ” or “scum”) and clan in this story and multiple stories that rapidly appeared in the days following, kinship was cast as a threat to sovereign power. Within four days of the story’s publication, the Ministry of the Interior authorized the first police occupation of a low-income neighborhood in Santiago. This police occupation was replicated in a handful of small neighborhood sections known in the popular imaginary as sites of drug trafficking and delinquency within the city. Only later did sociological and public-policy publications lend coherence to these occupations, casting them as “necessary” interventions to bring these “territorially stigmatized” and “ghettoized” neighborhoods back into the normative social order (Cornejo 2012; Frühling and Gallardo 2012). In El Zanjón, identity checkpoints by the Carabineros—a branch of the military police responsible for street patrol—were established on each passageway that served as an entrance and exit; Special Forces were brought in as a fixed point within the neighborhood to deter the open sale of drugs and to act as backup in drug raids; the GOPE, the Special Police Operations Group, rounds the street in armored vehicles; and the civilian Police Investigations (Policia de Investigaciones de Chile) Anti-Narcotics Brigade and Tactical Response Teams conduct drug raids. Often involving several dozens of police functionaries, these raids are authorized by judicial orders secured by the public prosecutor and authorized by judges through a grounding in the 2005 Drug Law. It was during one of these drug raids that Martita’s son was killed.2

A WORLD LOST

Martita and I sat in the storefront built into the patio of her house. We looked out across the iron gate into the bright sun that warmed the dusty street. Children made loops on bicycles while women walked up and down the street buying food to prepare for lunch. The neighbor’s ten-year-old daughter swung by on her bicycle with her big smile and chirpy voice: “Hola, Señora Marta!” Women glanced into the storefront to greet Martita and cheer her on: “Ánimo, hijita [Keep on going!].” Camilo was the last intimate kin to live with her in the house. After Martita’s separation from her husband the year before Camilo’s death, she and Camilo had worked together

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to build a successful business selling fast food—pizzas, sandwiches, hot dogs—in the storefront. “Pizza—600,” “Completos (hotdogs)—250” in adhesive lettering on the wall framed an empty fridge for soft drinks and a clear plastic box still full of hard candy and lighters. When I stopped by to visit, Martita had just gotten out of bed and it looked as if she had been crying. I asked her lightly how she was doing, and told her that if she was feeling unwell I could come back another time. She responded that she was remembering her son, and insisted that I stay. She began, “Look, everyone in the world said that the reason for living was hearing Camilo’s laugh in my house. He filled my entire space.” As she continued to talk, descriptions of Camilo were interspersed with her descriptions of the moment he was killed, itself an intersection of other contexts and other lives and deaths. Many of these contexts were not available to me on the day that I sat with Martita, and became available only as I continued to spend time with her, her sister, her other sons, and their families. The afternoon Camilo was killed, Martita had gone to her older sister Lola’s house. Four years earlier, Lola’s husband had been killed inside his house when gunfire between rival gangs ripped through the wooden house where they lived with their son. Lola’s intimacy with her husband was one in which sexual desire and violence were tightly knotted together, and was marked with multiple attempts at separation initiated by Martita, the police, and family courts. Upon the death of her husband, Lola fell into what Martita alternatively calls “a grave dementia” or “a terrible depression.” She stopped bathing, did not change her clothes, talked little, and chain-smoked day and night. For several months, Lola was interned in the Psychiatric Hospital, and despite minimal improvement, she was released into the care of her sister. (Neighbors simply called Lola “mad,” but this madness was accommodated in the everyday life of the neighborhood in various ways.) As she did every day, Martita was visiting Lola to urge her to bathe herself and to provide Lola’s son with a portion of lunch. The raid began when she was at Lola’s down the street. Several trucks of Police Investigations functionaries dressed in black combat gear and face masks entered the neighborhood. Throwing tear-gas bombs, they raided several houses and detained suspects. As the chaos subsided, Martita heard her neighbors yelling. Her son had been found, shot, and killed at the entrance of their house. She reflects: I never imagined that a thing like this could happen because we always conversed. This door is reinforced [steel] and you have to close it [a large sliding door to the storefront]. When there was a gunfight [balacera], we closed it and we were inside [the house] when they were firing [their guns]. Or if he was alone, he would have to just close it, or if I was alone, I closed it and always went inside. . . . And just that day, I left him alone, so from the beginning, I felt feelings of guilt: “Why did I leave him alone?” But I had left when he was still in bed. When the police arrive, everyone yells, and also when they leave, “They left!” So, he had to go have lunch with the girl [his girlfriend] who was waiting for him. Because of that, he got up from bed. When he heard the yelling “They left!” he opened the door to stick out his head to see if he could leave, and he was shot, and he fell right here

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inside. I don’t know. I feel that they have killed me, too. They killed a part of me. . . . Never in my life did it pass through my mind to live something like this, because we protected him so much. Sometimes, when there were fights, I would call him. “Son,” I would say to him, “do not let it even occur to you to come here. They are fighting outside [on the street].” “Ok, mamá.” Afterwards he called me: “Mamí, are they still fighting?” And I told him, “I will call you when it’s tranquil.” That’s how we lived, that’s how we communicated.

Drug raids and crossfire are neither dramatic nor exceptional; they are part and parcel of everyday life in this territory. Understanding this violence as part of the ordinary allows us to pay attention to the common sensibility that life is held and protected through the quotidian actions of “communicating” and “conversing” as well as Martita’s sense of guilt that arises simply from the efforts in attending to other kin. “Communicating” and “conversing” are what one has at hand to protect and hold a life, and this thought can be maddening. As Martita says, “Never did it pass through my mind,” “I never imagined a thing like this could happen.” But conversing and communicating also matter for a different sense of staying alive, in holding together a shared life: of life acquiring its life. When Martita spoke of her son, she spoke in the form of a conversation with him, as if recounting their life together was a recounting of the conversations that they shared. Each moment of acknowledging his death turned into a recounting of this sharing. Her recounting of how visiting the cemetery spurs her memory of “the entirety of him, his body” transfigures into a conversation in which Martita tries to persuade Camilo not to get a tattoo. Her recounting of her gesture of kissing his photo each night transfigures into their quotidian acts of a kiss good night and a morning greeting. I come in, I come out [of the house]. I don’t encounter meaning for my life. . . . I have this photo here [a large poster-size photo of Camilo that says, “You will always be in our thoughts”]. Every night I give him a kiss and say, “Bye, my son, I love you, you know that I have you . . . [fades].” Until sixteen or seventeen years old, he asked me permission to go to bed. After he started to date, he stopped doing that, but the kiss every night was sacred. “OK,” he would tell me, “I am going to bed. Bye. A kiss. Wake up well.” “OK, son, thanks to you, too, and you too wake up well.” In the morning, “Hi! How did you wake up?” And with his laugh. On Mother’s Day, his was the first kiss that I received since we lived here together, us two.

In these conversations, intimacies move beyond the normative ideas of mothering to one of an intimate partnership, “us two.” This is not to say that one mode of relationship—that of partnership—came to dominate the other relationship—that of mothering—as Camilo grew older. Rather, it is to be noted that Martita’s reflections move between what she says in terms of the nurturing and raising of Camilo and what is shown through the conversations that she stages: that Camilo had become her companion and that companionship was the liveliness of the house. Such boundaries between saying and showing

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not only show what losses fall under the normative idea of a mother’s grief—a loss that can be told and publicly acknowledged—but also show how the death of Camilo implicated the loss of a way of being in the world: the intimacy of companionship. Here, let me turn to Martita’s separation from her husband to show how the event of Camilo’s death resounded through her intimate relationships and entailed new estrangements. As Martita recounted to me over several different occasions, her husband, Pedro, had led a “double life” for several years that she suspected began when she was pregnant with Camilo. Over the course of time, his other life began to bleed into their life. Hints of the other lover appeared in his actions and increasingly drove her to what she calls “depression” and a resulting facial paralysis on one side of her face that she has had since Camilo was a small child. Pedro would insist that she sleep on the couch rather than sleep in bed with him because of her snoring. She suspected that he took tea at his lover’s house before returning home to take evening tea with her and the children, as he hardly had any appetite when he returned from work. The lover eventually appeared in a letter addressed to Martita, which her older sons opened and read, making her experience intense humiliation. Without providing the name of the sender, the letter recounted the life that Pedro and his lover had made together. Yet Pedro continued to deny the existence of the lover to her, saying that the letter was a fabrication. Because the letter had no name to attach to it, it became a ghost that circulated in their relationship. Their relationship became one of small insults that accumulated—an accumulation that Martita called “la mochila” (“the backpack”), the weight that she endured. Pedro wounded Martita with petty words. Martita recounted to me multiple times one specific scene that seemed to crystallize this wounding. Pedro was disgusted by aging and expressed his disgust in the physicality of growing old by constantly harping on the smell of her father’s aged body. Yet Martita prided herself on the care she took of her father, through which his dignity remained intact. It was Christmas. Martita had readied the house for the family dinner: wiping down the ceramic floor with chlorine bleach, decorating, and cooking. The dinner was ready and the table was set. Her older sons were going to show up shortly, and Camilo was sent out to get some soft drinks. When Pedro arrived, however, he said with great irritation, “Why does your dad always have the smell of feet [olor de pata]?” When Camilo returned minutes later, he found Martita in the bathroom weeping. He asked her why she was crying, and she told him, “Your father told me that your grandpa smells of feet.” By this time, Camilo was around fifteen years old. He confronted his father, who was sitting at the dinner table: “Why did you say that to her? It’s cloro that you are smelling.” An argument ensued. Camilo pushed his father out of the house, locking the gate behind him. Martita recounts that this was the first time that Camilo had stood up against his father, and it propelled Pedro to move out of the house, although they continued to consider themselves married. The year before Camilo’s death, Martita bitterly separated from Pedro. She stopped receiving financial support from him, and he stopped counting on the use of her car to

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go to work as a bus driver. Yet her eldest son, Luis, refused to acknowledge the separation. And, despite the deep rancors, every Sunday, Martita continued to prepare the family meal together in the house that Pedro had moved out of, everyone partaking in the concealment of a separation they knew had taken place. In the months after Camilo’s death, the affects surrounding the separation took on a different valence. With the deaths of her mother, father, older brother, older sister, and now Camilo and with the move of her two eldest sons to other low-income neighborhoods far from El Zanjón years earlier when the occupation had just begun, Martita would often say that she and her surviving sister were the “only huachas” (“orphans”) who lived in El Zanjón, since it indeed seemed that almost everyone else in the neighborhood was held, for good or for ill, in the webs of living kin. Her eldest son’s wife, Allegra, was not unaware of Martita’s solitude in El Zanjón and called her every day without fail, often attempting to persuade her to spend time with them in their house. Yet as Martita said to me bitterly after a long conversation with Allegra in which she learned that Pedro would also come to a barbecue at her son’s house, “I played the clown for so many years. Now that they killed my son, that moment is past.” In breaking that concealed past into the open, the event of violent death allowed Martita to claim this past rather than be a hostage to it. Yet that claiming simultaneously estranged her from relationships with her intimate kin.

L I F E B E T W E E N T W O D E AT H S

Camilo’s room had been left just as he left it that day, with stacks of Pampers baby diapers piled up in the armoire next to the television set, his bicycle leaning against the wall, a T-shirt hanging from a hook where he left it, and above the bed a large purple and pink banner with figures of balloons and teddy bears that said, “Welcome,” in anticipation of the baby to be born. A thick layer of dust had settled across his things, as with the rest of the furniture in the house. Martita struggled with that lifelessness, to be with it and in it, and to not be in it. These struggles, in turn, implicated a wider set of relationships in which she was enmeshed. But because of these very struggles she found herself at times estranged from these relationships. Blondie considered Martita to be her closest friend and the “mother I never had.” In her late thirties, Blondie lived down the street with her partner and her children from a previous relationship. Starting as a street vendor, she eventually established a storefront bazaar where she sold goods ranging from children’s toys to paper and pencils, detergent, and shampoo. For years, Blondie and Martita had called each other every day to chat and laugh. In a gesture of helping, concealed as needing help, Blondie pleaded with Martita to take over the chore of picking up her children from school. As she told me, she made up the excuse that she was so busy working in her bazaar that she couldn’t get away. Giving Martita this daily chore meant that Martita would necessarily have to pass by Blondie’s house to pick up the children, and thus Blondie could invite her in for lunch and tea.

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Blondie, too, saw “communicating” and “conversing” as a way of staying alive. Yet although Martita did eventually spend time with Blondie and took pleasure in Blondie’s stream of wisecracks and impersonations, she would grow uneasy and restless. “I have to go my house. My house is calling me,” she would say to Blondie. Later, she would comment to me with some exasperation, “It’s just that Blondie is very absorbing. I need to live my reality, now, here.” Like many row houses in El Zanjón, the only natural light that came into the house was from skylights cut into the roof. But because police often pursue young men on rooftops, the skylights were broken and covered with boards. During the day, the house was completely dark but for electric light bulbs, and one had little sense of the time passing. Martita’s bedroom was pitch-black, and she could spend days in bed. During one of those very dark moments when she could not get out of bed, she expressed to me her fear that her death would give even more pain to her living children, conveying this fear in terms of both the accumulation of deaths in her life and the specificity of Camilo’s violent death. I feel like a grandma because it’s hard for me to walk. The weight that I feel in the body: it is a very large weight. I came standing up [venía parando, conveys having endured] from the death of my dad and my sister who were carried [to heaven] within five months [of each other]. And now this happens to me. My father died, my sister died, and I separated. Three losses together. And I remained with him [Camilo]. . . . And, well, not a problem, because these were deaths that I had to overcome. But I do not think that I will overcome this [Camilo’s death], not even if I am very faithful [in God] or if God helps me. . . . I told my husband that my soul hurt when my dad died. And my husband said that the soul does not hurt [that the soul is incapable of feeling pain]. And now I tell him, “Now what happened with Camilo, do you understand what I said to you? Because according to you that day, the heart does not hurt.” . . . There remains only me and my sister who comes to see me, and I say, overall, it does not scare me to die in the manner that it happens and when it happens. As I told you, look at the deaths that I have, but I know that it will cause pain for my sons [if I die]. My sons were the fathers of Camilo. They loved him as fathers. The respect that they had between themselves. It scares me to become more ill than I am already, of pain. Because there are people who have died of pain.

In his essay “The Survivor’s Paradox,” anthropologist and psychiatrist Richard Rechtman (2006) draws attention to the limitations of PTSD, not in terms of its historical construction as a diagnostic category, but in terms of the clinical description that it renders by focusing solely on the empirical event. Discussing the Khmer Rouge extermination and his long-term work with patients who had experienced this genocide, Rechtman points out that the very fidelity to the dead can cast the living into the world of death. Thus, Rechtman’s therapeutic gesture in the clinic is to disinvest the power of the perpetrator’s rhetoric that sought to obliterate the symbolic frontier between the dead and the living, and in so doing, affirm that the patient is still alive. Moving beyond the bedside, however,

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may provide a different route to understanding the predicament of the “survivor.” For Martita’s struggle does not seem to be one in which she is bound into world of death through a fidelity to the dead so much as grieving a being in the world that was lost, an intimacy in which life acquired its life. That loss, as she said to me many times, was “killing” her. What pains Martita is imagining what her death might do to her living sons. Writing on the everyday and violence in the aftermath of the Partition of India in 1947, Veena Das asks the open-ended question of what it means to be a witness to violence. In a brilliant analysis, Das first turns to the figure of Antigone as witness, which in the West “provides a kind of foundational myth that explores the conditions under which conscience may find a voice in the feminine” (Das 2007, 60). Das suggests that Jacques Lacan’s reading of Antigone reveals two points: first, Antigone is moved toward the limit at which the self separates into that which can be destroyed and that which must endure; second, although Antigone’s brother is a criminal by the laws of the city, he is for her a unique being. “Antigone is making that speech when she can imagine herself as already dead—and yet she endures this awesome play of pain to affirm not her own desire but the nonsubstitutability of her brother” (Das 2007, 61). Antigone thus speaks from the zone between two deaths (her own death and her brother’s), voicing the truth of the uniqueness of being. Das contrasts Lacan’s rendering of Antigone with the far less dramatic speech of women, such as Asha, one of Das’s respondents, who descend into the zone of the everyday to inhabit it again—a space marked by the violence of the Partition of India: “What is it to bear witness to the criminality of the societal rule that consigns the uniqueness of being to eternal forgetfulness through a descent into everyday life—to not simply articulate loss through a dramatic gesture of defiance but to inhabit the world, or inhabit it again, in the gesture of mourning” (Das 2007, 62). Das, then, provides a juxtaposition of Antigone and Asha, of a zone between two deaths in which speech ascends to a higher plane and a zone of the everyday that has to be recovered by reoccupying the very signs of injury that were marked to provide continuity. Yet in both cases, we see the woman as witness who is not simply within the frame of events, but marked by those events (Das 2007, 74). With Martita, I would like to ask how one inhabits a zone between two deaths in relation to the ordinary. Listening to Martita’s anguish, I sense that Martita is speaking from this zone between two deaths, voicing the uniqueness of being of her son. For she, too, is imagining her life as having already been lived when she voices her fears of what her death will do to her living sons. Indeed, this projecting into the future in terms of seeing her life as having been lived—of imagining herself dead—seems to animate her actions in the present. Two months after her son’s death, Martita initiated formal proceedings within the criminal-justice system against the police functionary who shot her son. She sought out the parish priest who had called for an intensification of the police occupation, which she saw as directly causing the death of her son. After receiving some convincing that her son was not “one of those whom he did not like [that is, “a delinquent”],” the parish priest accompanied her to the mayor’s office, where she presented her case. The mayor

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put her into contact with the Municipal Victims’ Support Unit, a unit composed of a social workers, lawyers, and a psychologist, who work with those legally designated as victims of violent crimes, and he accompanied her to an appointment with the public prosecutor who would initiate the criminal investigation. As Martita recounted, the mayor pledged to give his “personal support,” promising Martita that when the case went to trial, he would personally see to it that a “lawyer with weight” was assigned to her case, rather than one of the lawyers of the Support Unit who had recently graduated and were undertaking their practicum in the Support Unit. What he did not tell her, however, was just how difficult it would be to even get to trial. When I met Martita, she was carefully saving documents related to her son’s legal case in a paper shopping bag: newspaper clippings on the case, a ballistics report that she had received clandestinely, a petition signed by hundreds of neighbors asking for justice for Camilo, a poem given to her by a friend. It was an archive of the afterlife of the event as it took form through the justice system, the press, and the neighborhood. She told me she was saving all of these documents for her granddaughter, Vivi, “[b]ecause one day she is going to grow and ask what happened to her father.” These documents were embedded in Martita’s imagination of her granddaughter’s future, a future in which the granddaughter would be connected to her father through the grandmother’s labor. Yet this imagination was braided with Martita’s concerns over how Camilo would be perceived by state institutions: as a victim of a crime, or as a criminal whose appeals to justice within the law are delegitimized from the start. Such worries draw from the experience of living in this neighborhood in which the very fact of being from El Zanjón casts one as a criminal whose claim to the law is always already threatened. Indeed, when I helped Martita get onto Facebook as a way to “communicate” with her kin and her friends when she simply couldn’t get out of bed, she wrote, “I ask God, Please give me the strength to clean my son’s name.” In his work with chronically ill and dying AIDS patients in conditions of poverty, Didier Fassin offers a profound meditation on the ethics of survival that occurs in seemingly unremarkable acts. A memory box containing a photo, a tape of an autobiographical narrative, a shoe, and a plaster handprint allows a woman to live on for her children (Fassin 2010, 90). Fassin discusses how this “ethics of survival” shows the tenacity of an attachment to life in circumstances that are frequently characterized as “bare life”: leaving traces of oneself allows one to live beyond death, to survive. Yet in compiling the archive and in her hopes for the criminal case, Martita is forging and nurturing a connection in which she is absent. Martita is not leaving traces of herself—her autobiographical narrative, her photo—but rather compiling traces of her son for her granddaughter. The labor is not expressive of an attachment to life as survival, but rather expressive of projecting oneself into the future as dead, in which what is at stake is how a possibility of a life together might be nurtured by the one who is absent. Here, a quiet striving to create possibility and affirm her son’s uniqueness of being is imprinted by the enduring of the illness of pain, a loss that is “killing” her.

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As the months passed, achieving a formal resolution through a trial became more and more elusive for lack of evidence that would prove without a doubt the individual culpability of the actor. This was not for lack of effort and care on the part of the team of lawyers, composed of a committed criminal lawyer from the criminal-law clinic of a major university as well as the Municipal Victims’ Support Unit. The case was framed within penal law; as such, it foreclosed any judgment as to whether or not such state disordering through a drug raid exposes people to lethality.

EXPERIENCE OF DISPLACEMENT

At the end of January 2013, I returned to Baltimore to teach, returning to El Zanjón six months later in July. I had known from staying in touch with Martita over Facebook and Skype that she often felt so unwell she could simply not get out of bed. As part of the Victims’ Support Unit program, she had received six sessions with a psychiatrist, who had prescribed Buxon (Wellbutrin) for depression, which she took alongside fluoxetine and clonazepam. But Wellbutrin was not available in the primary-care clinic, so she took what she could from samples gathered by the psychiatrist. When her samples ran out, she stopped taking the medication. She then began to experience trouble walking even one block without exhaustion. Her son Ángel paid for a private consultation with a cardiologist, who ordered an echocardiogram that revealed a leaky mitral valve. Over Facebook chat, she expressed relief to me that she did not yet have “el corazón agrandado” (an enlarged heart), which comes when so much pain is swallowed and held within the body. Within the space of a few weeks of my return to El Zanjón in July, three young men were killed in the neighborhood, after several weeks without crossfire. Martita had known all of the young men since they were little boys. One of the young men was shot in the head and was in a coma for two weeks before he died. He had struggled with addiction to pasta base, and in ambling around the neighborhood was inadvertently caught in crossfire between rival gangs. Martita related to me that this man’s mother had been her neighbor since her childhood. They grew up together, were pregnant with their youngest children around the same time, and her neighbor’s son had spent countless afternoons with Camilo, playing in the street and in their houses. While the first young man was in a coma, the second young man was shot and killed in what was said to be a dispute between gangs. The mother of the second young man was also Martita’s neighbor, and she remembered when the little boy would run back from school with her older sons. When I came to El Zanjón to visit Martita, police investigators were accompanying the Carabineros, and neighbors were watching closely their every move, stopping in the streets to observe them. There was tension in the streets; my heart was pounding. One of the women I spent time with saw me come down the street and waved me over. She told me that she had known the second young man since childhood; they played together, grew up together: “Sure, he went to the ‘other side’ and all, but it still hurts, and he left his wife and a little baby girl.” As she related to me the details of how he died, she

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grabbed her chest. “I still feel it here in my heart,” she told me. Violent deaths resound through the proximities that come with living in this territory. I sensed that for Martita, the violent deaths of young men whom she helped raise and whose mothers and aunts were her neighbors since childhood had a cumulative effect—like multiple wounds— sapping the energy she needed to remain alive. Martita was in bed and could hardly move. Blondie had also come to visit, and we sat at the edge of Martita’s bed. Blondie attempted to convince Martita to take a trip to see a machi (a Mapuche healer) who lives in shack in San Bernardo, and who according to Blondie has treated famous TV personalities. She related how the machi had performed a limpieza (ritual cleaning) of her house, ridding it of all the evil, when her husband had temporarily run off with her niece. Martita said, “Bien, bien,” a kind of agreeing to go, but I sensed that she was agreeing only to assuage Blondie’s desire to care for her. When I came to her house to check in on her a few days later, I asked her about the machi. She responded, “Blondie is really superficial. She does not see beyond. [No ve más allá.] What will a machi do for me? Will she give me my son back? I see his body decomposing in the ground. That is what I see. I see Laura’s son on the machine [ventilator], with a bullet in his little head [cabecita, expressing endearment], and I do not have the strength to visit her. She supported me when Camilo died; she came to the wake, passed by my house, greeted me with “Ánimo, Martita.” There’s so much evil [maldad] here in this población, but my problem is not one of evil.” An occult force was not animating the house, creating misfortune and suffering. Rather, a region of herself died; and it wounded her that she could not give that bit of life to others, as they had done for her in the simple word ánimo. In the next few days, the third young man was shot and killed, a young man whose aunt Martita knew well from their having grown up together in the neighborhood. I had promised to visit Martita in a week’s time, but when another friend from the neighborhood warned me via Facebook that things were very “brígido” (slang for “extremely tense”), I decided to postpone my visit. I called Martita to say that I did not think I could come to visit. She hesitated and said, “But I thought you might accompany me to the doctor . . .” Her words were so slow and faint; I felt compelled to go. When I reach her house, Martita is standing in the doorway, looking onto the street. Blue and white balloons are tied to the houses down the passageway where the young man’s aunt lives, in anticipation of the bringing of the body and guiding it to where the velorio would be held. The streets are still; the balloons dance in the breeze. Dressed in fuzzy sweatpants and sweaters with a thick scarf around her neck, Martita holds onto my arm as we walk down the street without speaking. Tears roll down her face, and she wipes them away again and again. We reach the private medical appointment. She tells the physician that she has not been able to get out of bed and that she has not been able to eat without vomiting. “I just want to sleep, but I cannot sleep,” she says. The physician is listening attentively, and asks her if this is the same as before. “Depression?” he asks, “Yes, doctor.”

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Once he begins to listen to her heart with the stethoscope, tears roll down her face again. She tells the physician that her neighbor’s son was killed, like Camilo, for he also received a bullet in the head. She says that she wants to go to the velorio, as her neighbor had done for her, but she just cannot face it. The physician encourages her not to go to the velorio, and advises her that if she can, it would be best if she could leave El Zanjón, at least for a while. This conversation occurs while the physician is listening to her heart with his stethoscope. The physician gives her sample boxes of Posivyl (Paxil) that he says can be taken along with the fluoxetine, and ups her dose of clonazepam. We take a taxi back to her house. Martita asks me if she should take the Paxil. I respond that I think she might want to see a psychiatrist who can manage her medications. She asks me if I have any connections with a psychiatrist who could help her. I agree to look into it. When we arrive at her house, Martita insists that I call her daughter-in-law Allegra and tell her what the doctor said. I call Allegra and describe Martita’s condition and the physician’s advice, adding that I, too, am very worried. “Do you think it would be possible to come get her today?” I ask. Allegra comes later that night. A week passes. I meet with a colleague in the Department of Psychiatry at the University of Chile who specializes in mood disorders, and he agrees to take Martita on as a pro bono patient. (He continues to see her at monthly appointments.) I call Martita to arrange the first appointment, and Allegra, Martita, and I meet at the Psychiatric Clinic. When we enter the clinic, Martita remarks that this is where her sister was treated. “And now I arrive,” she says, intimating that she herself might be going mad. As Allegra and I have coffee in the food court during the clinical interview, Allegra tells me how she found Martita crying in the kitchen the day before: “She told me that she was scared to be a burden, that she thought we did not want her here in our house. I told her, ‘But you don’t have to return to El Zanjón. We want you to stay with us.’ ” As we are walking out of the clinic, Martita tells us, “The doctor prohibited me from returning to the house.” It dawns on me then that her desires with respect to leaving and returning to the house and to El Zanjón were undetectable in her talk. She is not speaking in the first person. Instead, others are speaking in her place or she speaks in the passive voice. My call to Allegra, describing her condition and citing the physician’s advice, allowed Martita to remain silent. Later on, when I am back in Baltimore, she tells me over Facebook that now “they [her son and daughter-in-law] are not letting me return to El Zanjón” and that “the doctor still prohibits me from returning.” It is as if, with respect to El Zanjón and her house, her autobiographical voice needs to be fugitive amid all of ours, ranging from the voices of experts to those of friends and kin. Might this withholding of the autobiographical voice with respect to the territory be registering an experience of displacement? And how might the experience of displacement allow for a reinhabiting of the life of the neighborhood when endurance wears thin? In a sense, Martita’s phrases—“they are not letting me return,” “the doctor still prohibits me from returning”—allow her to experience leaving El Zanjón as an experience of displacement in

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which external forces allow for and authorize a break from the territory of El Zanjón, where violent deaths resound through a living-with born out of proximity. By experiencing this leaving as displacement, in which she herself is not declaring herself to leave, she is also re-creating a relationship to El Zanjón, but one in which the neighborhood El Zanjón is not identical with its territory. As with many others who have been exiled from El Zanjón, the neighborhood becomes the network of relationships in which the territory is enfolded. Yet the experience of displacement also entails a loss—a loss of the simple living-with of proximity in which a neighbor might stop by and say, “Ánimo.” Here, we might locate the loss—or death—involved in the relation of the actual and the eventual. The experience of displacement might be one avenue to healing, reinhabiting an everyday life, but it itself involves a form of dying—the loss of that proximity, a way of being in the world—that, for Martita, cannot be rendered in the autobiographical voice.

R E F L E C T I O N S : L I F E BY A T H R E A D

The cumulative effect of these violent deaths on Martita returns us to how the pervasiveness of death relates to the individuality of death. For Martita, these violent deaths signify the losses of multiple being-in-the-worlds: a death entails not an abstract other’s grief, but the grief of those with whom one has shared a life by virtue of kinship and proximity. Here, we are asked to engage the concrete living of this pervasiveness and to understand how it differs from the idea of the pervasiveness of death as enumerated in homicide statistics or in the stories of “cycles of revenge,” which consign the uniqueness of being to eternal forgetfulness. The cumulative nature of deaths is not insignificant in relation to the individuality of death; its experiential significance arises with regard to each and every death. This pervasiveness of violent death is endured through the small actions of communicating and conversing that achieve everyday life. That these actions sometimes may not be enough to hold life shows the very fragility of life in El Zanjón, expressed in women’s words: “life is by a thread” (la vida está por un hilo). Martita’s sense that a region of herself was dead, and her viewing her life as having already lived, from the perspective of being dead, reveal just how tenuous that thread can be. Not only does life by a thread encompass the actions that protect and hold a life from the very real dangers of gunfire on the street; it also encompasses the small and unremarkable acts that forge intimacies in which life acquires its life. Here, I believe it is necessary to move from an emphasis on “everyday resilience” in which individuals demonstrate an extraordinary talent for life against a background defined by a “continuum of violence” (Scheper-Hughes 2008). Instead, we might begin to appreciate the actual labor in threading life again and again through ordinary gestures and words in and through violence. In so doing, we can attune ourselves to the deep embodied sensibility that this endurance may not keep up with the fraying from violence, when one thread is put in place for every three threads lost: when multiple losses are

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those multiple deaths of regions of the self. In El Zanjón, women speak of “ceasing to want to live” (dejando de querer vivir), a common experience in which one stops eating meals and taking medications, stops taking the sun in the street and greeting one’s neighbors. Ceasing to want to live can be understood in terms of what Hayder AlMohammad helpfully conceptualizes as “to fall out of the world,” in which the relation between person and world is not a given but is achieved. (See chapter 26, “Never Quite Given: Calling into Question the Relation between Person and World in Postinvasion Iraq.”) Martita deeply knew it. Enduring the multiple losses can push enduring past its limit. Displacement was a way to stay alive. Yet the experience of displacement, a form of enduring, also entailed loss. Glimmers of madness emerge in this unsettling limit where endurance is braided with loss. We might consider this an “inner” limit to the constancy of language revealed in the small failures of the ordinary. In her thoughtful work on violence, endurance, and everyday life in Sri Lanka, Rebecca Walker (2013) describes a tree-planting ceremony undertaken by an informal human rights group in which a tree is planted for each and every death, regardless of who was responsible for that death. Rani, a woman whose son was killed and whose husband was disappeared, incorporated watering her son’s tree into her daily chores, thus making mourning a part of her daily activities while also expanding the ordinary ways in which such mourning gains expression. In her closing reflections on the possibilities of peace in Sri Lanka, Walker turns to Judith Butler’s formulation of grief as revealing a “primary human vulnerability” from which a tenuous “we” emerges, arguing that it is both human vulnerability to loss and loss itself that can be mobilized to forge connections (Butler 2004). Yet my sense is that in reaching toward a theory of political community in which the central question is whose lives are grievable with regard to a public, the actual range of grief and what it does in forging as well as making tenuous those connections in and to a lifeworld are somewhat muffled. Indeed, what Walker so powerfully shows is how grief cannot be “known” independent of the singular other, inviting an engagement with a whole range of relationships intimate and strange. Learning to listen to grief attunes us to the echoes of a death in which the loss of that uniqueness of being resounds for a single soul, such that we somehow deeply know that which we “imperfectly, or only intermittently” understand: “The whole planet can suffer no greater torment than a single soul.” This listening is what I have attempted to undertake with Martita’s expression “But I am learning to live it.” Each and every death presents a learning anew of grief, which is also a learning anew of a world in terms of making it one’s own. With Martita, I learned that this labor of making a world one’s own is not simply finding again one’s place in the world but rather involves nurturing the possibility of a life together in one’s absence. Here, we may appreciate the conditions under which conscience may find a voice in the feminine: how the reinhabiting of life is performed by the one who is falling out, making a world one’s own—for others—from the zone between two deaths.

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N OT E S

The research for this chapter was generously funded by National Science Foundation Grant no. 1123505. I would like to thank Martita for allowing me to listen, and the many women in El Zanjón whose embraces allowed me to conduct my fieldwork and whom I consider my respondents. I thank Veena Das for her words, which I learn from immensely. I thank Maarten Ottens for bearing this work with me. 1. All names are pseudonyms, including the name of the El Zanjón neighborhood. 2. Elsewhere I have discussed the fluctuating relationship of intimacy and estrangement between police and neighbors; see Han 2013.

REFERENCES

Arias, Enrique Desmond. 2006. Drugs & Democracy: Trafficking, Social Networks, and Public Security. Chapel Hill: University of North Carolina Press. Arias, Enrique Desmond, and Daniel M. Goldstein. 2010. Violent Democracies in Latin America. Durham, NC: Duke University Press. Auyero, Javier, and Agustín Burbano de Lara. 2012. In Harm’s Way at the Urban Margins. Ethnography 13 (4): 531–57. Benson, Peter, Edward F. Fischer, and Kendron Thomas. 2008. Resocializing Suffering: Neoliberalism, Accusation, and the Sociopolitical Context of Guatemala’s New Violence. Latin American Perspectives 35 (5): 38–58. Butler, Judith. 2004. Precarious Life: The Powers of Mourning and Violence. London and New York: Verso. Cavell, Stanley. 2007. Forward to Life and Words: Violence and the Descent into the Ordinary, edited by Veena Das, ix–xiv. Berkeley: University of California Press. Cornejo, Catalina Andrea. 2012. Estigma territorial como forma de violencia barrial: El caso del sector El Castillo. Revista invi 27:177–200. Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Fassin, Didier. 2010. Ethics of Survival: A Democratic Approach to the Politics of Life. Humanity: An International Journal of Human Rights, Humanitarianism, and Development (Fall): 81–95. Frühling, Hugo, and Roberto Gallardo. 2012. Programas de seguridad dirigidos a barrios en la experiencia chilena reciente. Revista invi 27:149–85. Goldstein, Donna. 2003. Laughter out of Place: Race, Class, Violence, and Sexuality in a Rio Shantytown. Berkeley: University of California Press. “Jorge Correa Sutil: ‘En la legua no regirá ley de la “Tía Nena.”’” 2001. La Cuarta, September 27. Koonings, Kees, and Dirk Kruijt. 2007. Fractured Cities: Social Exclusion, Urban Violence and Contested Space in Latin America. New York: Zed Books. Rechtman, Richard. 2006. The Survivor’s Paradox: Psychological Consequences of the Khmer Rouge Rhetoric of Extermination. Anthropology & Medicine 13 (1): 1–11. Rodgers, Dennis. 2006. Living in the Shadow of Death: Gangs, Violence, and Social Order in Urban Nicaragua, 1996–2002. Journal of Latin American Studies 38 (2): 267–92.

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Scheper-Hughes, Nancy. 2008. A Talent for Life: Reflections on Human Vulnerability and Resilience. Ethnos 73 (1): 25–56. Walker, Rebecca. 2013. Enduring Violence: Everyday Life and Conflict in Eastern Sri Lanka. Manchester, UK: Manchester University Press. Wilding, Polly. 2011. “New Violence”: Silencing Women’s Experiences in the Favelas of Brazil. Journal of Latin American Studies 42 (4): 719–47.

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29 WALKING THROUGH Movement, Schizophrenia, and the Vicissitudes of Presence

Sarah Pinto

In the mid-1980s, a young army officer took his bride to Agra. This was no honeymoon to the Taj Mahal, but a visit to Agra’s other storied destination. At the Agra Institute of Mental Health (formerly the Agra Asylum, then the Agra Mental Hospital)—an institution that has made the city as associated with the lonely fate of the mad as with remembrance of the beloved, as well known for lost lives as for loves immortalized in marble— Nishchal introduced Tulsi to his mother. Ammi, as they called her, had been living there for fifteen years, since, defeated by efforts to abate her schizophrenia, her husband, Keshav, Nishchal’s father, institutionalized her. Nearly fifteen years after that first visit as a married couple, Tulsi and Nishchal brought Ammi out of Agra. They had waited for conditions to be right—when Nishchal could leave a military career and life in motion, when family tensions calmed. The latter never happened, so “one fine day,” as Tulsi described it, Nishchal just “took the car, drove to Agra, and brought her home.” Tulsi had accompanied Nishchal to Agra twice yearly, in timings dependent on army placements. Their stays were brief and told little of Ammi’s day-to-day existence. They brought supplies—saris, petticoats, blouses, soap, food—that they suspected hospital workers kept for themselves. They gave Ammi sweets and, when in season, mangoes, whose juices may have reminded her of childhood visits to the family’s country landholding, when she and her eight siblings were attended by village girls assigned one to each daughter, summers when they ate ripe mangoes by the bucketful. After receiving her gifts, Ammi would, in Tulsi’s words, “go back into her own world,” singing bhajans,

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conducting pujas in the air, speaking to gods and unseen entities. She returned to the yard and walked up and down its long pathways. In India, master narratives about aging and mental illness channel into two plots: the myth of abandonment, the casting out of those deemed unfit for society (epitomized by women “dumped” in mental institutions); and the myth of the “Indian family,” the embrace of the ill and aged by the caring attentions of kin. These counterstories portray India as fissured by modernity and its others, the bane of the “backward” or the succor of tradition—as what Lawrence Cohen calls “an irrevocably split world” (2007, 105). But Cohen and other ethnographers of aging in India find other things of note: tensions and vulnerabilities within kinship, responses to social and economic pressures of contemporary life— things that tell more complicated and cosmopolitan tales than those encapsulated by “the good family,” “the bad family,” or “the family” at all (Cohen 1999; Lamb 2000). I met Tulsi in the city of Ammi’s youth. For several years, I visited Ammi, Tulsi, and their extended family in interactions that were, for me, welcome commas in longer stretches spent working in psychiatric wards. In making sense of circumstances in those places, I was steeped not only in forceful cultural narratives, but in anthropological writing about abandonment, critiques of new institutions, products of global biopolitical arrangements that served as catchment areas for the socially excluded, places where the normalizing work of clinical knowledge practices dovetailed with the moral codes of family life (Biehl 2005; Povinelli 2006, 2011). Ammi’s life upended this idea, too. Neither abandonment nor inclusion was fully accomplished in her movements. They certainly did not map onto institutions or households in a meaningful way. I found more to make of ways of living and moving, Ammi’s and those of the people who passed through her wake: small bodily movements that patterned hours into days, and large passages between cities and continents that patterned days into months, years, and lifetimes. This involved a look toward literal movements, and required seeking in Ammi’s bodily habitations something other than the ordering work of normalization or the resistant work of insubordination; something other than bodies as nodes of discourse, “performing” and “making sense”; something involving, instead, the “real incorporeality of the concrete,” all-but-inscrutable ways of being-in-passage (Massumi 2002, 5). In Agra and out of it, walking, gestures, and passages were the ordering elements of Ammi’s life, suggesting paradoxes of selfhood at once ontological and deeply social. They involved history, not only in the sense of habitus described by Pierre Bourdieu (1977) as symbolic fields enlivened in durable bodily practices, but in the immediacy of sensations conditioned, but never completely, by spaces and the relations that enter them. A person can walk only so far before she meets a wall; a door locked when one person visits may be opened when another comes. Though no less choreographed than movements in which one might find evidence of cultural norms, ideals, or roles—the gestures of daily labors, aspirations, or skilled executions (Bourdieu 1977; Downey 1998; Wacquant 2004; Boddy 1989)—Ammi’s movements were happenstance patterns, particular and peculiar.

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Their relationship to meaning was uncertain. They were toned by symbolic arrangements, but only in subtle shades. They were equally things of psychosis. Meanings were locked into Ammi’s particular grammars, difficult to translate into more conventional language. While her movements, like her words, might have borrowed from recognizable vocabularies, they were, if not entirely illegible, never fully readable. Speech and movement exceeded interpretation. Of primary importance was not what anyone could make of them; rather, Ammi’s movements, and the movements of a family that coalesced and broke apart around her, were signs of life, indexes of living, even if unnarratable (though one might try). The question was not, in other words, what did her movements mean, but what kind of living did they involve. Of their visits to Agra, Tulsi and Nishchal’s descriptions suggest pauses of intensity across decades of marriage. Agra struck Tulsi as being “quite nice,” “just a quiet old place.” But that was on the outside. “You get inside, into the sections where the men are and the women are, the inmates, it’s quite terrible. They are just lying there, and you see the attendants there yelling at them, ‘Chelo,’ [“move it”] and they just treat them like cattle. And what happened in the dorm, I don’t know.” It took an hour or more for Ammi to be brought to the visiting shed. Tulsi suspected that this was the time it took to make her presentable. Ammi rarely spoke of Agra and never directly. Her speech was full of loops, turns, and breaks, unfamiliar idioms and entities whose ontology could only be surmised. Little of her time in Agra could be known through this thicket of florid speech; little could, in Gilles Deleuze’s phrase, be “debased into recollection” (1989, 120). When she did speak of Agra, it was no surprise to Tulsi that she referred to it as “the ashram,” a place of sanctuary, gardens, and pathways. But the treatment she received suggested anything but safety, though Tulsi and Nishchal could glean nothing more than impressions and fragments of imagery. They suspected the ayas had bribed, threatened, and abused patients. They saw evidence of poor conditions in Ammi’s weight loss, ill health, and tendency to urinate on the floor. That part of Ammi’s past was opaque, its memory hidden in patterned movements and florid words. “The women’s section was kind of enclosed,” Nishchal said. He described the wall dividing the living quarters from the visitors’ area, the large yards, and the gate bisecting inside and outside. “Mom, she was very fond of walking, pacing, pacing up and down, which is typically one of the things that symptomatic, schizophrenic people do. So she would pace up the walk, and she could walk for five hours a day. And that’s why she’s in physically very good shape. . . . The good thing about that place is that there was a lot of walking space for her, and that was the kind of thing she would want to do, she would walk around. Typically she had this habit of feeding the birds . . . and you know, making friends with the animals.” Tulsi cut in: “The pallu of her sari . . . whatever you give her, that habit [she has], you know, she’ll offer you [food]. What used to happen was the pallu of that sari would get

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eaten by rats, and cockroaches, and all sorts of things, so we had to say don’t—not don’t, but we had to get her out of that habit over there, always in her sari a laddu to put it out for the squirrels and for the birds.” Out of Agra, feeding others remained one of Ammi’s habits. She offered pieces from her plate before taking bites herself. Agra’s reputation as a place of confinement and stasis is interrupted by its own history. In the 1960s, its director, K. C. Dube, an internationally renowned scholar and friend of Nishchal’s family, published a paper in the Indian Journal of Psychiatry that called for “unlocking the wards.” Critical of the use of physical restraint, Dube described his efforts to reinstate patients’ “personal liberty” by allowing freedom of movement through hospital grounds (1963, 2). Patients permitted mobility showed less “hostility,” were “relaxed and happier,” and “escapes were very few” (4). Dube felt that freedom of movement was not only ethical, but healing, necessary for creating “therapeutic communities” (2, 6). He described encountering terrible conditions in Agra’s locked wards and his distress at the way patients begged to be discharged (4). Clinical environment was an essential part of patient well-being, he wrote, and movement integral to social life; a healthy clinical setting was formed through “healthy relationships” (2). Agra was, then, even during Ammi’s time, a place for experiments in freedom, for challenging received wisdom about the nature of the “mental patient” and the mobility she might be allowed. Ammi’s pacing is part of this history, though how it speaks to health and liberation is open to question. Where walking might involve a journey, the tracing of a narrative, or where lines of movement might map the trails of a story, or pathways represent progress (Ingold 2007), the repetitive movements of pacing suggest something different. Unlike walking, pacing is nonnarrative (Desjarlais 1997). It is not a journey and does not lend itself to the emplotment that makes walking like storytelling, or pathways evidence of a remembered self (Desjarlais 1997). Pacing destabilizes the relationship of presence to experience, the “mode of being known in the modern West . . ., an inwardly reflexive, hermeneutically rich process that coheres through time by way of narrative” (Desjarlais 1997, 17). Pacing defers cohesion and interpretive depth. Its directionless movement, or movement of limited direction, involves “acutely sensorial . . . awareness” and has “little room for introspection” (22). Or so much we may surmise. There may be stories, plots, and contemplation in Ammi’s footsteps, but they are not available to us. Pacing condenses the two histories of Agra—Ammi’s and Dube’s. It contains contrasts between Ammi’s poor condition and Dube’s progressive efforts, between movement as therapeutic or symptomatic, as liberating or sign of confinement. It bears the irony of Dube’s efforts, or at least indicates differences between scholarly ideals and realities of clinical practice. It is easy to think of places like Agra as settings of exclusion and confinement, places of enclosure defined by a lack of mobility and epitomized by locked doors. It is just as easy to conflate movement with freedom. But Ammi’s pacing in Agra, and movements surrounding her, involved different arrangements. In the mid-1990s Nishchal took leave from the military and began planning for life with Ammi. Dube had been insisting she no longer belonged in a hospital. Ideas about

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institutionalization had changed. Hospitals were no longer places for long-term residence, and Ammi’s disease had, in Dube’s words, “burned itself out.” Her symptoms were not aggressive and were unlikely to change. She needed space to move. Tulsi said, “The doctor was telling him, ‘She needs open space. You can’t put a person like this in a closed space or she’ll just have a breakdown again.’ So we were just trying to figure out what to do.” Bringing Ammi home presented enormous physical and emotional challenges, trials that fell largely on Tulsi. Ammi was angry, erratic, and wild, ungroomed, lice-ridden, incontinent, and unwilling to bathe. She was often terrified. The world she returned to was transformed. There were more cars and buses on the road. There was more commotion. Conditioned by decades of treatment, she was afraid of electricity and refused to touch a light switch or see doctors. Tulsi and Nishchal felt she had developed “addictions” in Agra to paan and pharmaceuticals. They took her off antipsychotic drugs— instantly, without weaning. Ammi’s psychosis became (and remained) florid. “Rehabilitation” involved “breaking Ammi into a routine.” Dube advised Tulsi to remember that Ammi was a mental patient, “not like a normal person.” They had to find out what her routine had been—what time she had taken tea, what time she expected to bathe—how her life had been organized for the last decades. They learned little of this directly, so they watched her actions and observed the timings of her demands. Around Ammi, the family was falling apart. Nishchal’s father objected to “bringing her out.” He had returned to India from decades overseas, divorced and in a poor emotional state. Ammi’s younger son, also objecting to Nishchal’s actions, was angry. The usual small conflicts of family life were loaded with heavier histories of blame and conflicting senses of responsibility. The brothers disagreed on whether it was necessary to spend time with Ammi. Ammi did not recognize her younger son, a fact that for Keshav meant the family could not remain coherent in her presence. Nishchal blamed his father and brother for failing to try to “connect” with Ammi. The brothers stopped speaking. Ammi’s moving body, in this case, not only bore the marks of social life; it also left marks in space and time (Franko 2004, 118), marks on other moving bodies. “Connection” was at the heart of an emerging ethos of love, healing, and family life. In Agra, Tulsi said, Ammi “was nothing, barely human, like a worm.” Made so by institutional life and the cruelties of treatment, she had forgotten how to be among others. She needed to be socialized to be a person capable of “connection” and “recognition.” Nishchal said that Tulsi was largely responsible for the success of these efforts, especially in her constant efforts to “connect.” For Keshav, Ammi’s inability to “recognize” others was a breach of kinship, a rupture in the fabric of relationships. When the house proved too small to contain it all, Nishchal bought a plot in a city a night’s train journey away and built a spacious home for Ammi. There, she stayed with a servant, Rani, and Rani’s husband and young sons. The house was “for” others as well, if dedication can be gauged by time spent and feelings of belonging. Keshav found a haven in monthly visits to this comfortable home. The neighborhood was full of other

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retirees, and he had relatives and friends around the corner. Ammi’s bedroom was shifted from the house to the servant’s quarters. Though smaller than her original room, it had a view of the mountains. Tulsi was not happy with this arrangement. She worried about Ammi and about how it looked to others that Ammi lived in the servant quarters. But there was little she felt she could do to change this. It was a small sacrifice in the larger scheme of things. Once Ammi was quieted into familiarity with her surroundings, her limbs settled into a rhythm of predictable flows. Her days involved walking through the house, the rooftop, and the small front and back gardens. Rather than the back-and-forth of pacing, these passages were repeated circuits, round and cyclical, with stations along the way, at once small journeys marking out the day and ways of getting from one place to another. She entered the house through one of the back doors—into the kitchen or bedrooms, then into the living area via the dining room, where the saint Sai Baba castigated her from his photo on the wall. Then down a step into the drawing room and out the front door to the veranda. Though she walked up to the gate, she was too frightened, Tulsi said, to go farther. A year or so after Tulsi and I first met, she confessed (as she put it) that they had received residence papers overseas, where Nishchal had accepted a posting. She asked me not to speak of this until the news was open: “If anyone hears, they will immediately say, ‘They have abandoned that woman.’ ” I asked if they had considered taking Ammi with them. “It really wouldn’t be possible,” Tulsi said. The change would be too traumatic. “And she hates going out. Even now, she will only go out of the house with Nishchal.” The apartment in the new city would be too small. Here, “she can be outside and come and go through the house and her own room in the outhouse.” She recalled that when they moved Ammi into the new home, they had also built a room onto their home in Delhi in case it became necessary to bring her back. But Tulsi soon realized this would never be possible. It would be too confining and at the same time “too public,” too close to others in the house. The same would be true in the new place. “This is the best we can manage. She’s in a home, she’s not lost, she is healthy, she is with people. We visit her every month. As long as she is healthy and happy, she is in a home, we have built a home for her, that’s good.” Tulsi and Nishchal moved away, Ammi remained in her home, and Nishchal’s father continued his visits. He seldom acknowledged Ammi. When he was not there, she ate at the dining-room table. When he was, she took her metal plate to her bedroom or sat on a chair at the edge of the dining room. Tulsi and Nishchal visited as often as they could— a few times a year, at least. Amid comings and goings, Ammi’s world was measured into time frames that were, at the same time, spatial arrangements and distillations of kinship. The presence of others determined possibilities for movement. When others were there, the house was open. Bedroom doors (and the telephone) were unlocked; additional doors onto the garden were opened. When Keshav, Tulsi, and Nishchal left, they locked

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the bedrooms (and the phone), shutting off pathways to the outside, dimming central living spaces, and leaving one circuit from outside to inside. Different routes for walking depended on others’ movements, on the presence or absence of family, on relationships with domestic workers, and on feelings of dependency and suspicion. Where pacing in Agra may have pushed against institutional life, these routes for the passage of time involved the contours of intimacy, stitching space and time to social circumstances, one day to the next, one visit to the next. Anything but journeys, these were eddies at the margins of social life, conditioned by the lives of others but separate from them. Much like pacing, they indicated the shifting status of presence. These were choreographies of togetherness and loss, of presence by degree. Though intensely solitary, this was intersubjective life. As such, it had products, if intersubjectivity is “understood in terms of the dialogue as creating a third, something like the dance that is distinct from the dancers yet co-created by them” (Benjamin 2001, 55). From such solo movements emerged entities: “insanity,” “the family,” “marriage,” “schizophrenia.” As a form of living, it made sense of dying—of the deaths of intimacies and the dissipations of subjects, even in the spaces of their coming into being. It would be easy to valorize the times when the house was full of kin, doors opened, and spaces multiplied. But what Ammi preferred, or what her days were like when family were gone, was difficult to know. Might there be contentment in stillness and absence? Or predictability and comfort in fewer passageways? Like more formal choreographies, circuits around and through alternately opened and closed-off rooms, circuits that demarcated morning from afternoon from evening, day from night, “affirm[ed] . . . the mournful perception of the temporality of the present as an ongoing, ceaseless passing away of the ‘now’ ” (Lepecki 2006, 123). These were choreographies of presence and loss and the cyclicality of both. Not least of which may have been the loss of time. Ammi said, “The three cycles, when they go, they go and I don’t have any cycles anymore. But I don’t know where they go.” According to her sisters, Ammi—whom they knew by her name, Neelam—paced as a child. She also talked to herself, but this was “just part of her personality.” Neelam was a spirited girl, “artistic by nature,” performative and drawn to drama. At times she walked back and forth on the rooftop of the family home—a grand kothi that had been gifted to Neelam’s great-grandfather by a courtesan. But those episodes were brief. As one of her sisters put it, “She used to walk by herself, talk in the mirror, but for a short time—not so long because there were so many of us around, there was always some interruption.” Much later, well into her marriage to Keshav, pacing stopped being a matter of quirky intensity and became a sign that something was wrong. After the birth of a second son, Neelam’s life was full of the hardships of army life. Along with frequent moves and Keshav’s long postings, there were financial struggles. Keshav’s family was not rich, and Neelam struggled to run a household in which she was often “alone”—in the absence of her husband though surrounded by people. She was responsible for many: a household

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staff, her sons, and the infant daughter of Keshav’s widowed sister who was taking a teacher-training course. When Keshav was at the front in the war with China, Ammi became depressed, sleeping for long stretches and then not at all, pacing for hours. Though Nishchal and the servants became her caregivers, the task overwhelmed them. Tulsi said, “The servants couldn’t handle her because she was very angry. She’d walk out in her petticoat, not in her clothes. Once she hit the servant, she punched a woman, she broke her nose, and she’d go sit in the local chai stall in the corner.” Embarrassed by his mother’s behavior, Nishchal would go outside and beg her to come in. When Nishchal’s father returned, he started Neelam on a series of treatments. She saw a European psychiatrist and began what would become decades of electroshock therapy. It is unlikely that Ammi was anaesthetized for ECT (electroconvulsive therapy); “direct” application of ECT is common practice in Indian psychiatry. That these treatments were traumatic was evident in the way, decades later, she spoke about “wires on her head,” “electricity,” and “shocks,” and refused to turn on lights or touch an electrical outlet. Keshav came to feel that Neelam’s mental condition in old age was as much the result of ECT as of the illness itself. When Nishchal was in his late teens, his father, now retired from the military and entering the foreign service, sent Neelam to her family home—the infamous estate with its crowd of siblings, in-laws, servants, and visitors. There, her symptoms worsened and her diagnosis changed from depression to schizophrenia. She may have been teased by her brother, who inflated her paranoid suspicion that her husband was having an affair (this is what Tulsi said). Or the account of her brother’s ruthlessness may have been a story told by a woman in the throes of delusion (what Neelam’s sister-in-law said). When Keshav returned, devastated by his wife’s condition, he took her home. Not long afterward, Ammi was put in Agra. People disagree on how and when the decision was made, but for Nishchal, his mother’s commitment to an institution came as a surprise. He returned home from army training to find his mother absent. “Where is Mummy?” he asked. His brother said he and their father had taken her to Agra. Though accounts of this period are inconsistent, this was the start of decades of strife and a core episode in family narratives. People debated the role Ammi’s brother played in her commitment and the culpability of Keshav and Nishchal’s younger brother. They differed not only on who was to blame for Ammi’s decades in Agra, but on the source of her illness. According to Ammi’s sisters, the instability of army life, financial struggles, overwhelming household labors, and a husband’s long absences pushed a woman with a vivid emotional life into mental illness. For Keshav’s family, Neelam brought illness into the marriage. Details depended on the teller’s stakes in the decisions that led to Ammi’s commitment, and confounded any easy sense of a “subject,” of how a person might bear or relate to her own past or the pasts of others. In a challenge to narration, Ammi was the concatenation of multiple and conflicting histories, including family histories and histories

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of Agra, inhabiting what Deleuze referred to as “forked” time (1989, 50). Across stories and in the void that was Agra, whatever it was that brought Ammi to her circuitous pacing in the house in the foothills consisted not of a linear tale, or multiple perspectives, or even movement toward the present, but “sheets of the past” (Deleuze 1989, 99). Some of these pasts contradicted others. Many were never fully knowable. None conformed to easy meaning making. In reflecting on these lives and histories, I have found myself turning to metaphors of dance. This is not to say that there was something dance-like in Ammi’s movements (though there was), or that hers were choreographies with aesthetic sensibility or intentional structure (though they may have been). Rather, ontological conditions of dance offer ways of thinking about intersubjective life in, and of thinking about schizophrenia as imbricated with, vicissitudes of presence, presence in itself, and presence in life with others—the constant habitation of deaths-in-life. For many who think about choreography, its most striking ontological offering is its ephemerality. In dance, time and change are conditions of existence, not only in symbolic portrayals, but in the ways loss is inherent to the medium. At the same time, choreographed dance provides a way for one body to inhabit another—that of a lost other, or a lost self (Jackson and Shapiro-Phim, 2008). As in Ammi’s case, thinking with dance permits an unstable status of “subjecthood,” a sense of subjects as malleable and elusive, lost in daily choreographies and formed in encounters with the contours of others’ movements. But there was one literal connection to dance. Regardless of what Ammi’s family blamed for her illness, nearly all spoke of her childhood talent for Kathak, a dance form associated with the city of her birth. “She was a very romantic person,” one of Neelam’s sisters said. “She used to love dance. She loved poetry. She was a very, very good dancer, extremely good.” That sister had visited Neelam in Agra only once. After that, she said, it was too difficult to “see her in such a place.” She did not return. Speaking to me in her home in Delhi, as Tulsi sat by and my daughter played in the garden, she described Neelam’s childhood. A renowned Kathak guru, invited to the house to give lessons, felt that Neelam had special promise, even more than his own son. He told Neelam’s father he wanted to make Neelam his special student, to ritually bind her in discipleship. But her father objected, the sister explained: “He thought that if she goes out and performs here and there it will bring a bad name. . . . He didn’t want her to be like one of those dancing girls. It was very backward then. It’s not like South India, where they think of [dance] as a good art.” Neelam had been performing at programs and competitions, earning medals and recognition. “One day, someone said, ‘[The guru] is calling, there is a function going on, and they want her to perform.’ And my father was there. And he said, ‘At this time of night? It’s seven o’clock, it’s getting dark, she can’t go.’ And from that day onward it all stopped.” “Everything, even the lessons?” I asked.

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“Yah, no dancing. ‘Not from my family, no one will go out and dance like that’ [my father said]. So that was it. She used to dance in front of others, she was the center of attraction; she felt important. And suddenly all of that was gone. It was gone. So that also had something to do with it.” It was not that their father objected to educating girls. “We were all encouraged in our education. In that there was no discrimination. My father was very broad-minded, he loved to teach people. Hanh, he said—yes, study as much as you want. She studied to her MA. In Hindi, in X college. She was a good student. All that was there, but somehow I think the artist inside her got broke.” Neelam was not surprised by her father’s pronouncement. She knew she would not be allowed to dance forever. She said nothing. But for years she would retreat to her room and, surrounded by mirrors, dance for hours. In the early days of her illness Nishchal’s father enrolled Neelam in dance classes, thinking it might be therapeutic to reawaken her creativity. But her body was aged, stiffened by bearing and raising children. The movements were too difficult to relearn, and her thinking was too disorganized. Classes were abandoned. When preparing for Ammi’s move to the new house, Tulsi came across her ghungroo, her dancing bells. She gave them to Ammi, who tied them around her ankles and took tentative steps. Sometimes, Tulsi said, she brings out the bells. “And sometimes she even does a few small steps.” Not long before writing this, in a large concert hall in Boston, I attended a performance given by the same boy Neelam had studied with, the son of her master, now patriarch of the lineage and performing with his own son. In the elderly man’s movements I felt dancerly echoes of Ammi’s embodiment. This was less so of footsteps and turns, things most evocative of “dance” to my Western-trained eye. I had never seen Ammi dance, so there was no sense of connection there. Rather, in refined facial and hand gestures of storytelling, rehearsed movements shared Ammi’s unchoreographed ones, the delicacy and precision of small moves as she responded to invisible persons and gods. A virtuosic demonstration of complex rhythms evoked Ammi’s habit of counting on her fingers, over and over, interrupting streams of language with numbers. Kathak is a narrative art. The dancer becomes a character in an epic tale—a deity, a mortal intimate with a god—and conveys plot, conversation, and emotion in facial expression. A solitary dancer may interact with ranks of invisible others as she appears to respond to entities just out of sight. Either this vocabulary remained in Ammi’s own ways of being, or its dialogic grammar simply brought to my mind the way bodies wear— often with marked clarity—their delusions. Or I was imposing connections. I had gone to the performance looking for shades of Ammi, for continuity with her life. I did not expect to feel her presence in such a vivid, uncanny way. But perhaps I shouldn’t have been surprised. I was, after all, still seeking a person through the lives of others, even when she had long ceased to be present to them, still finding the doubleness of presence and absence in moving bodies.

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Watching the performance, I sensed that the body—sane or psychotic, choreographed or habitual, across decades and across the divide between art and symptom—was at once necessary to and separable from the gestures of which it was part, bearing similar tectonics across vastly different paradigms of living and being. Like more everyday choreographies, these echoed movements across time, space, and context, illuminating the way dance involves but is never entirely of the body, the way absence is among the terms of dancerly presence. In the same way, Ammi was, though, absent from kin for decades, a vortex in their lives. This kind of subject extended from a single body to bodies together and apart, from dance to relations, to the movements of people toward and away from one another, the vicissitudes of presence-with-others. Shortly after admitting Neelam to Agra, Nishchal’s father moved to Europe. There, he fell in love with another expatriate and returned to India saying he wanted to remarry. He convinced Nishchal, still a young man, to take on Ammi’s guardianship. Ammi was not legally capable of consent, so divorce was attained on grounds of her mental unfitness. It was not clear whether Neelam was aware of her divorce. I was convinced she was. Tulsi and Nishchal thought not. They reminded me of Ammi’s delusion that she was married to a Bollywood actor and had converted to Islam. Ammi seemed to recognize her husband, though she never spoke of him in that way, calling him, instead, Pandit-ji (“librarian”). Where it would be easy enough to assign to Keshav the role of agent of abandonment, and to see in his actions callous disregard, this would be several paces too far. Keshav, who considered himself perpetually unlucky in love, had been besotted with Neelam, falling in love during their courtship after their engagement was arranged. In his own account, Ammi’s schizophrenia had meant the loss of a wife. Tulsi said, “He was a complete slave to her charms. That was his weakness, that he would do anything for her. They were very attached. . . . He loved her. He used to say, ‘Neelu, Neelu.’ ” In the new house, Keshav took the sunny front bedroom with a window onto the veranda. Guests awakened to the drone and melody of religious chants broadcast from his stereo. Though he seldom looked at or spoke to Ammi, in a morning ritual, she knocked on his bedroom door (“the library”) and received from him (“the librarian”) a book, pamphlet, or card—gifts that were recycled as they circled into Ammi’s possession and out again to be gifted another morning. She touched it to her head in gratitude. There was sadness in this. Tulsi described the way Ammi always seemed to be looking for Keshav, following him but keeping a distance, knowing “what the rules are.” She went to his room at mealtimes to offer food from her plate. In his absence, she sometimes asked for him. One afternoon while Tulsi and I sat in the drawing room, Keshav came over carrying a folder printed with the name of a nursing home. I expected him to tell us about a place he wanted to put Ammi. Instead, he held out a black-and-white photograph. “This is a picture a day before my marriage. My wedding to Neelam.” There was a strange

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disorientation in seeing Ammi as a young woman—filled out, rounded, her eyes alert and intense, looking straight ahead. Later, Tulsi told me about something Ammi had said about “the Tagore Library.” I asked what she meant. “She means Nishchal’s father,” she answered. Then, turning to Ammi, she said, “The librarian is coming on Friday. Are you happy he is coming?” Ammi looked down. She nodded gently as she turned the pages of a magazine. “You adore him, don’t you, Ammi?” “Hanh, yes, but I can live without him. He can see that. I adore him, but I can fight also.” Tulsi laughed. “I will be very happy when he comes.” “Will you miss him? Will you miss him when he goes away?” Ammi gave no answer. Tulsi asked again. After a pause, Ammi said, “I see the car when it is going. See how it goes. But there is no . . . ” She gestured vaguely at her cheeks. It would have been easy to miss the motion. “No tears,” Tulsi offered. “No.” “I know. You don’t feel emotions like that.” “No, no tears. Not for any car.” Another time, Tulsi had asked Ammi if she had missed “Pandit-ji” and “Chittu” (her nickname for Nishchal) and Nishchal’s younger brother when she was “in the ashram with the gate.” Ammi replied, “The wind that blew in the trees outside came inside also.” Thinking about similarities and differences between Agra and Ammi’s new home, I was reminded of the paintings of Edward Hopper. Many feature women gazing out of interior spaces. Some, in the absence of a human subject, portray empty, windowed rooms, boundaries between interior and exterior—spaces divided by shadow and sunlight, windows onto sea or sky. Are these images of confinement or contentment; safety in domesticity with a gesture toward freedom, or containment with freedom denied? Yellow wallpaper or rooms of one’s own? Distinctions are unclear, and the relationships of “interior” and “exterior” to each other is mutable. Light flooding through windows is strikingly warm, but it divides interiors into angular fragments of light and dark while remaining undifferentiated outside. Does light illuminate and beckon or intrude and expose? Does it fragment or conjoin? Is it movement or stasis? In both its elsewhereness and broken availability, light in its passage destabilizes associations of interiors with either containment or security, and exteriors with either freedom or dislocation. In Ammi’s life, locations were difficult to evaluate. It is impossible to know, though we might conjecture, what “the wind in the trees” brought with it. One can think of Ammi’s view of the mountains from a room in the servant’s quarters. Or of her “liberation” from medication into a consciousness swamped by delusion. Or her place “at home” in a house

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devoid of kin, near a beloved husband who will not speak to her. Like the light passing through Hopper’s windows and slicing space into lines of shadow, Ammi’s was a life of motion that was, at the same time, a static state of being. So many of her passages crossed divides: circuits between household and garden (but never beyond the gate), “inside” and “outside” Agra. In these movements, categories of freedom and containment, aloneness and togetherness, presence and absence were reordered, becoming things in motion. These were choreographies of loss. Though Ammi’s family did not place her childhood loss of dance in an absolute relationship to mental illness, their reflections figured dance as a statement about loss, about a soul living fully and the kinds of death involved in its denial. Perhaps this was a quiet reference to other, more intimate losses—the loss of mothers, sons, husbands, and wives—that made hers a story about love and its ends as much as about a mind and its dissolution. There is in dance a sense of loss in the momentariness of movement. Scholars have made much of the ways the existence of the dance is fluid and unstable, the way, in it, “the presence of the body is always preceded, always prefaced by, always grounded on, an open field of absence” (Lepecki 2004, 3). Poet and essayist Paul Valéry described the dancer as a body that disappears into its motions, one that is “devoured”—by time, by form. “One can no longer speak of ‘movement.’ . . . Its acts are no longer distinguishable from its limbs” (Valéry 1950, 198). Dance theorists have long contested Valéry’s vision of the dancer, but interest remains in dance’s unique status as an art that evaporates as it comes into being, one that has a peculiar status of existence. But, they have observed, the ephemerality of dance is remarkable only when we think of dance as juxtaposed with other art forms; considered in relation to other aspects of social life, dance is no more evanescent than anything else (Jackson and Shapiro-Phim 2008). Stories about Ammi’s loss of dance may have been literal, but they may also have been a way of whispering of the vulnerabilities of life more generally. So, too, they suggested the loss involved in love and kinship. Ammi’s daily choreographies, not dances as such, were paced by the presence and absence of others, by the flux of intimacies and different kinds of solitude, by “connection” and rejection. Where movement and dance were literal elements in Ammi’s life, they were also signs of life with others, of the lives and deaths of love, the micromortalities of social life. Like modern Western choreography, circuits taken through an empty house may have been a “technology” whose “drive is to fixate absence in presence, to occasion the dancer’s ‘joining again’ those already departed” (Lepecki 2006, 124). In focusing on movement in social analysis, casually or otherwise, there is a danger of emphasizing its liberatory capacity. But Valéry’s vision, even where it acknowledges the vitality and joy in dancing, sits unsteadily where liberation is concerned. Invoking movement often means invoking agency. The loss of self into movement can be a pleasure. But the vicissitudes of presence involved in Ammi’s domestic circuits situate existence in a different relationship to selfhood than notions of agency or liberation imply. Movement, here, speaks to loss and containment as much as freedom and pleasure. It

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evokes the alterity of stasis in the way bodies in motion among other bodies in motion, whether in hospitals or in homes, on stages, or in studios, play out the momentariness of their conditions, the violence of time. Like dance, “it rehearses and repeats the disappearance of the subject who longs to be remembered” (Phelan 1993, 147). As I have suggested, the beauty of such a body may not be that it is a vehicle for meaning—about societies, selves, or structures—but that it is capable of eluding meaning. This body in motion involves more than a capacity for signification—as normal or abnormal, as living up to moral or political codes for personhood—or for bearing social disciplines. The limited legibility of movement can provide access to forms of presence elided by a sense of the body as a text or object of scrutiny. So much about Ammi’s life involved illegibility simultaneous with efforts—asymptotic at best—to understand, to make life explainable. But Ammi’s was a fierce and tensile presence at the edges of legibility and social life. That her life involved dance literally was just part of the way in which fraught ways of being, forms of consciousness and affect, lived out the vulnerabilities of presence, the self’s uneven relationship to existence. Here, movement may have been a sign of life and being, but only in its relationship with death and nonbeing, presence perceptible as in direct relation to absence. Such dances involved constant, inevitable deaths—the repeated death of the subject in the moments of its making (Lepecki 2006). In other words, although movement offers signs of life, we should not see it as other than a sign of life’s relationship to death, the many small instances of dying that make up a life. Neelam’s pacing both bore and carved into time and space arrangements of love and its dissolutions. Her relocations left imprints in the lives of others, and her schizophrenia created a life knowable (in conventional terms) only in relief, in the contours pressed into the lives of others. Her movement was a way of living. It was at the same time a way of dying, of bearing the many small and large deaths involved in life with others and in the passage of time. Habitations of movement were repeated contracts with the immediate future. Neither speech nor embodiment, abandonment nor incorporation, these many footsteps on grass and polished concrete, the gestures from a forgotten dance, these movements of illness and “rehabilitation,” this togetherness and separateness—these contained the tractability of living, of life as constant encounter with things that fade away.

REFERENCES

Benjamin, Jessica. 2001. “The Primal Leap of Psychoanalysis, from Body to Speech: Freud, Feminism, and the Vicissitudes of the Transference.” In Storms in Her Head: Freud and the Construction of Hysteria, edited by Muriel Dimen and Adrienne Harris, 31–64. New York: Other Press Biehl, João. 2005. Vita: Life in a Zone of Social Abandonment. Berkeley: University of California Press.

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Boddy, Janice. 1989. Wombs and Alien Spirits: Women, Men and the Zar Cult in Northern Sudan. Madison: University of Wisconsin Press. Bourdieu, Pierre. 1977. Outline of a Theory of Practice. Translated by Richard Nice. Cambridge: Cambridge University Press. Cohen, Lawrence. 1999. No Aging in India: Alzheimer’s, the Bad Family, and Other Modern Things. Berkeley: University of California Press. ———. 2007. “Song for Pushkin.” Daedalus, Spring, 103–15. Deleuze, Gilles. 1989. Cinema 2: The Time-Image. Translated by Hugh Tomlinson and Robert Galeta. Minneapolis: University of Minnesota Press. Dempster, Elizabeth. 1995. “Women Writing the Body: Let’s Watch a Little How She Dances.” In Bodies of the Text: Dance as Theory, Literature as Dance, edited by Ellen W. Goellner and Jacqueline Shea Murphy, 20–38. New Brunswick, NJ: Rutgers University Press. Desjarlais, Robert. 1997. Shelter Blues: Sanity and Selfhood among the Homeless. Philadelphia: University of Pennsylvania Press. Downey, Greg. 1998. Learning Capoeira: Lessons in Cunning from an Afro-Brazilian Art. Oxford: Oxford University Press. Dube, K. C. 1963. “Unlocking of Wards: An Agra Experiment.” Indian Journal of Psychiatry 5 (1): 2–7. Franko, Mark. 2004. “Given Movement: Dance and the Event.” In Of the Presence of the Body: Essays in Dance and Performance Theory, edited by André Lepecki, 113–23. Middletown, CT: Wesleyan University Press. Ingold, Tim. 2007. Lines: A Brief History. New York: Routledge. Jackson, Naomi, and Judith Shapiro-Phim. 2008. Introduction to Dance, Human Rights and Social Justice: Dignity in Motion, edited by Naomi Jackson and Judith Shapiro-Phim, xv–xxxv. Lanham, MD: Scarecrow Press. Lamb, Sarah. 2000. White Saris and Sweet Mangoes: Aging, Gender and Body in North India. Berkeley: University of California Press. Lepecki, André. 2004. “Introduction: Presence and Body in Dance and Performance Theory.” In Of the Presence of the Body: Essays in Dance and Performance Theory, edited by André Lepecki, 1–12. Middletown, CT: Wesleyan University Press. ———. 2006. Exhausting Dance: Performance and the Politics of Movement. New York: Routledge. Massumi, Brian. 2002. Parables for the Virtual: Movement, Affect, Sensation. Durham, NC: Duke University Press. Phelan, Peggy. 1993. Unmarked: The Politics of Performance. New York: Routledge. Povinelli, Elizabeth. 2006. The Empire of Love: Toward a Theory of Intimacy, Genealogy, and Carnality. Durham, NC: Duke University Press. ———. 2011. Economies of Abandonment: Social Belonging and Endurance in Late Capitalism. Durham, NC: Duke University Press. Ross, Janice. 2008. “Doing Time: Dance in Prison.” In Dance, Human Rights and Social Justice: Dignity in Motion, edited by Naomi Jackson and Judith Shapiro-Phim, 270–84. Lanham, MD: Scarecrow Press. Valéry, Paul. 1950. Selected Writings of Paul Valéry. New York: New Directions Publishing. Wacquant, Loïc. 2004. Body and Soul: Notebooks of an Apprentice Boxer. Oxford: Oxford University Press.

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30 “NOT DEAD YET” Changing Disability Imaginaries in the Twenty-First Century

Faye Ginsburg and Rayna Rapp But I’m not dead yet!! MONTY PYTHON AND THE HOLY GRAIL

Not Dead Yet (NDY) is a U.S.-based disability rights group founded in 1996 that opposes euthanasia and assisted suicide. The group—establishing its credentials for ironic and deadpan humor—takes its name from the scene quoted above in the film Monty Python and the Holy Grail, in which plague victims are thrown onto a cart and hauled off to be buried. A man dumped on a pile of corpses protests that he is “not dead yet!!” but his cries are ignored as the tumbrel rolls on in a Pythonesque moment of gallows humor. Not Dead Yet offers noisy opposition to “deadly forms of discrimination against old, ill and disabled people . . . [and] demands the equal protection of the law for the targets of so called ‘mercy killing’ whose lives are seen as worthless” (Drake 2013). We start our chapter with the case of NDY to highlight the cultural labor and activism that have been crucial to changing the disability imaginary in America (and elsewhere) beginning in the late twentieth century, when the presence of disability in public life became increasingly visible. A central part of these conversations has to do with who is entitled not only to the rights of citizenship, a watershed accomplishment of legislation in the United States and elsewhere, but to life itself, whatever supports that might require. Not Dead Yet is one of many social formations that make up the evolving American “disability world” that we have been studying over the last decade, starting with questions about how knowledge (or ignorance) of disability enters into prenatal diagnosis decisions (R. Rapp 2000; Ginsburg and Rapp 1999). Later, as parents of children with disabilities, we began an exploration of how children have come to be classified for special educational

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services. They currently represent 13%–15% of the nation’s students; in New York City, where we focus our work, the number is 17%. We became particularly interested in how families, schools, clinicians, scientists, media makers, and activists have all been reimagining both domestic and public life around that social fact. As we follow children, families, and projects over time, we have expanded our framework to encompass questions of disability as they are imagined and organized over the life cycle (R. Rapp and Ginsburg 2011, 2012; Ginsburg 2012). In 1999, Not Dead Yet made headlines through its demonstrations against Peter Singer, an Australian philosopher hired by Princeton University, whose writings support infanticide of disabled newborns. Not inclined to pull punches, NDY labeled him “the most dangerous man on earth” (Hari 2004). In the twenty-first century, NDY activists amplified their dissent, becoming increasingly visible during high-profile controversies about living and dying with disabilities. In 2004, for example, the group protested the removal of Terri Schiavo’s feeding tube1, as well as the message of the movie Million Dollar Baby, in which the injection of an overdose of adrenalin to euthanize a suicidal woman rendered quadriplegic from a boxing accident is depicted as a compassionate act. Not Dead Yet’s unruly and disruptive protests underscore the dark edge of the current zeitgeist, illuminated by their activism on behalf of people with disabilities. The questions of life and death that these eruptions pose—infanticide for profoundly disabled newborns, the complex issues raised by long-term life support, the popular cinematic portrayal of a “preference” for death over living with disability—are unquestionably part of contemporary social life. Yet they build on a history in which assumptions about the appropriateness of ending the lives of those with what were then considered severe disabilities were widely accepted as part of the heritage of eugenic thinking.

THE LONG SHADOW OF EUGENICS: THE DOUBLED TELOS OF MODERNITY

Our opening examples emphasize that issues of living and dying related to disability are “not dead yet”—always in conversation with a long trajectory of debate on vexed issues of medical intervention, stigma, and social isolation. Indeed, the present-day disability rights movement is haunted by—and protesting against—the legacy of eugenic ideas and resulting social policies that in the early twentieth century made their way from the United Kingdom to the United States to Germany and then resonated across the globe. These clashing perspectives—of eugenics and disability rights—represent what we have elsewhere labeled the doubled telos of modernity (R. Rapp and Ginsburg 2001). By this we mean that the democratizing impulse toward the inclusion of disability is inevitably in tension with what may be considered its opposite: the drive toward perfectibility that fuels much recent culturally seductive neoeugenic medical innovation and intervention. These seeming antinomies, we argue, are foundational to the complex biopolitics that shape living and dying in the current era. We suggest that the intensity and salience of disability

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in contemporary public discourse, whether repressed or embraced, flows from the fact that disability is a category that any of us might enter in a heartbeat, or over the slower course of the debility that comes if we are lucky enough to live on into old age. As disability activists frame it, we are all only “TAB”: temporarily able-bodied. Whether Foucauldian, Freudian, or Freirian, this chapter is deeply indebted to that perspective and the recognition it demands of the existential fragility of all bodily states and the consequent deep need for human interdependence across the life course. The “disability world” profoundly rejects the reduction of impairments to a medical model. Our perspective is in harmony with our editors’ concerns to show how life and death are not “polar opposites but intensities that wax and wane and are co-present in all life events.” Indeed, as some of our subjects “aged out” of the school system into young adulthood, our own fieldwork expanded to encompass what has come to be understood as the crisis in transition. Schools have been compelled by federal and state law to meet the needs of all children, however imperfectly, regardless of disability. Once people with disabilities (PWDs) enter the world beyond the educational system, access to services, higher education, meaningful work, independent living, and caretaking needs is far less available, particularly for those at the lower ends of the socioeconomic spectrum. If demographic trends increase as projected—a point we address below—this situation will only intensify: the number of disabled citizens in the total U.S. population, currently estimated at 19%, will undoubtedly increase significantly over the next decade (Administration on Aging 2013). As we have learned repeatedly in our research, the concept and experience of disability are always deeply entangled with changing family and kinship formations, state policies, caretaking economies, and forms of public culture that literally can shape life and death in North America and around the globe. Historians have played an important role in showing us how quickly attitudes toward disability can change from life enhancing to deeply discriminatory and even eugenic. Their scholarship reminds us, for example, that people with disabilities were proscribed from civic space across much of the twentieth century. Such practices were reinforced in the United States beginning in the 1860s, when the so-called Ugly Laws prohibited citizens with disabilities from appearing in public space, enduring in some states until the 1970s (Schweik 2009). Such prejudice against disability included the encouragement of passive infanticide and other eugenic ideologies in early-twentieth-century America that migrated to Nazi Germany, where murderous policies against people with disabilities (among other populations) escalated to genocide (Pernick 1996; Longmore and Umansky 2001). In much of the developed West, more mundane forms of institutionalized bias against disability persisted well after World War II, as families were regularly encouraged to institutionalize their disabled children “for their own good,” despite the fact that in such settings, people suffered from neglect and abuse and were at times used as captive experimental subjects for medical trials (Stern 2005). Such practices and their life-threatening consequences were accepted as normative aspects of living and dying until the rising disability rights movement and

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other allied forces scrutinized and protested this kind of dehumanization that was being muffled by the language of medical expertise. This kind of eugenic thinking, we argue, is “not dead yet” and continues to shadow the status of disability in the present in what we would call its neoeugenic form, over the life cycle from birth to death. As noted above, the philosopher Peter Singer’s utilitarian argument that families should have the choice to euthanize severely disabled newborn infants is based on the hypothetical burden such children might place on parents’ “preferences for happiness” (Singer 1993, 1995). His position has been widely challenged by disability rights activists as with the aforementioned case of the 1996 Not Dead Yet protests. In 2002, he engaged in a public debate with the late Harriet MacBryde Johnson, the highprofile disability rights activist and lawyer who lived until 2008 with a congenital degenerative neuromuscular disease. Their debate became the subject of a subsequent widely circulated New York Times Magazine cover story, “Unspeakable Conversations” (Johnson 2003). Johnson began her critique by sketching a primal family drama about living and dying imagined from Singer’s philosophical perspective: He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. . . . As a shield from the terrible purity of Singer’s vision, I’ll look to the corruption that comes from interconnectedness. To justify my hopes that Singer’s theoretical world—and its entirely logical extensions—won’t become real, I’ll invoke the muck and mess and undeniable reality of disabled lives well lived. That’s the best I can do. (Johnson 2003)

Anthropologist Gail Landsman, drawing on her work on maternal care of disabled infants, offers another critique of the instrumentalism that Singer brings to the evaluation of the worth of human life when disability is involved. In contradistinction to Singer’s assertion that “killing a disabled infant is not morally equivalent to killing a person” (Singer 1993, 161), Landsman takes his position as a point of entry “for analyzing the relationship among concepts of personhood, the transformative experience of mothering infants with disabilities, and the commodification of babies in North American culture” (Landsman 2004, 101). In her 2009 ethnography, Reconstructing Motherhood and Disability in the Age of “Perfect” Babies, Landsman analyzes changes in maternal narratives of sixty mothers with babies newly diagnosed with congenital disabilities over their first several years of adjustment. She shows how this group of mothers, using medical services in upstate New York, have struggled to transform the medical model that initially defined their children into a counternarrative of maternal and familial incorporation (Landsman 2009). In our own research among families in the New York City area with children with disabilities, we constantly encounter the construction of such “new kinship imaginaries.” We use this term to describe the substantial sociocultural work that parents

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and especially mothers engage in to create alternative models of family life that creatively encompass life with a difference (R. Rapp and Ginsburg 2011). We note that these parental narratives are the foundation for more-public disability imaginaries as they emerge from the intimacies and injuries of familial life and into a range of media, from books and blogs to curricular innovation. They speak to the concerns of the editors of this volume to “capture the texture of contemporary life by showing how one becomes vulnerable to disease, accident, death, but also forms of institutional creativity and attentiveness to others in one’s world, the formations and deformations of life and death.” Narratives of difference and their place in family life cycles can have profound and contested consequences. This is evident in cases that have emerged as public social dramas—notably, the case of so-called pillow angel “Ashley X,” born in 1997 with static encephalopathy, a condition in which her brain does not develop. In 2004, anticipating the complexities of puberty for a vulnerable child, her parents requested and received permission from the bioethics board at their hospital for radical surgery that excised Ashley’s breast buds and reproductive organs in order to control her growth. Their goal was to more easily manage her care at home as she grew older and larger. When this story became public in 2006 in an article in the Archives of Pediatrics & Adolescent Medicine (Gunther and Diekema 2006), this decision was subject to considerable scrutiny and critique by disability activists, medical professionals, and scholars alike (Battles and Manderson 2008; Kittay 1999, 2011). For example, bioethicist Arthur Caplan criticized what has come to be called the Ashley Treatment on national television, where it was discussed widely. His argument succinctly summarized the disability rights position: it is “a pharmacological solution for a social failure—the fact that American society does not do what it should to help severely disabled children and their families” (Caplan 2007). Others weighed in with more emotionally laden language: Not Dead Yet, together with Feminist Response in Disability (FRIDA), spoke of the treatment as a violation of Ashley’s human rights, labeling it “invasive medical experimentation,” “mutilation” and “desexualization.” The Disability Rights Education and Defense Fund (DREDF) declared, “[W]e hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct” (“Ashley Treatment” 2013). As the Ashley X debate renders evident, medical technologies are frequently embroiled in questions regarding living and dying with disability. Complex ethical questions are often framed in medical terms as they emerge in a variety of situations across the life cycle. Yet, this social drama and our research demonstrate that such a frame is too narrow: they need to be understood in the context of kin and community, the often substantial demands of caretaking, and the perspectives brought into view by disability rights activism.

L I F E , D E AT H , A N D A S S I S T I V E R E P R O D U C T I V E T E C H N O L O G I E S

Of the many recently developed medical technologies, assistive reproductive technologies (ARTs) play one of the most prominent roles in discussions of living and dying in the

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context of disability, resurrecting older eugenic questions in new form. Since the 1970s, a burgeoning popular and scholarly literature has emerged, responding to the escalating panoply of genetic tests increasingly being used for “quality control” of anomalies present in both parents and fetuses (Adams 2012; Parens and Asch 2000). Such ideas have a complex resonance with the selective but worldwide uptake of ARTs and the choices placed upon pregnant women and their supporters as knowledge of fetal anomalies expands. Feminist disability scholars in particular have raised ethical issues about the cultural values that discourage the continuation of pregnancies when embryos or fetuses are diagnosed with genetic variances (Asch 2000; Kittay and Kittay 2000; Saxton 2000). The growing need to incorporate disability inclusion perspectives—what we call the social fund of knowledge about what might be required to live with impairment—as a necessary part of reproductive testing (and consequently, potential abortion decisions) is more acute than ever. The case of a recently introduced ART, noninvasive prenatal testing (NIPT), is exemplary. This test, first used in 2011 and increasingly available, promises earlier diagnostic first-trimester information regarding “fetal anomalies” with a simple blood test that might lead directly to the choice to terminate a pregnancy. Right now, for the 75% of American women with access to standard prenatal care, routine screening blood tests in both the first and second trimesters tell a pregnant woman that she is at heightened or lower-than-average risk for carrying a fetus with a known impairment, but they do not provide a direct diagnosis. Those promoting NIPT tests claim that they can perform a direct diagnosis of fetal abnormalities significantly earlier and more accurately than can older forms of blood screening. Right now, however, NIPT can pick up only chromosomal conditions such as Down syndrome. Its capacity to diagnose a wider range of disorders at the level of DNA analysis, with consequences we may not yet clinically understand, is under investigation. As a result of its potential diagnostic strength, ease of delivery, and capacity to reach a much wider demographic, those working on NIPT make powerful, and potentially lucrative, claims to replace older forms of prenatal screening. With prior screening technologies, only women considered to be “at risk” went on to have their fetuses directly diagnosed. Now, as NIPT is becoming routinized as a replacement for prior screening systems, the goal of having all pregnant women tested relatively quickly radically expands the likelihood that many more women will encounter a diagnosis of fetal impairment and be faced with an abortion decision (Lo et al. 1998).2 The molecular science behind these new technologies is commercializing at a rapid rate. Moreover, new tests now pick up some anomalies that have unknown clinical significance. In such cases, women and their supporters will be faced with a decision to end or continue a pregnancy without understanding how a fetus with atypical genetic sequences might actually develop. Early studies suggest that virtually all who are involved, from medical staff to the women who receive the test, have very little comprehension of the serious consequences that this “simple blood test” may entail, even if the diagnosis is clear (Bernhardt et al. 2013; Sayres et al. 2012). Yet current market-driven techno-innovation threatens

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to muffle a necessary conversation about the ways that neoeugenic thinking is proliferating in routinized prenatal care, with abortion as the likely outcome of a “positive diagnosis.” In other words, the range of conditions available for testing is increasing geometrically under market-driven conditions, but the fund of social knowledge accompanying such decision making—what it might be like to live with a particular disability—is woefully inadequate for a generation of women and their partners who face the dilemma of being “moral pioneers” in these intimate matters of life and death (Dollar 2012; Franklin and Roberts 2006; R. Rapp 2000; R. Rapp and Ginsburg 2007, 2012). The “choice” regarding who is admitted to the human community—with or without a disability—is officially placed on the shoulders of the family, assisted by emergent Foucauldian pastoral professions such as genetic counseling (Roberts 2009; Samerski 2009). Despite the fact that genetic counselors are trained to be “value neutral,” some argue that the very existence of this technology and its routinized use assume that potentially disabled fetuses will be aborted, and thus suggest the need for more public awareness around these practices (Parens and Asch 2000). Additionally, the aura of scientific expertise surrounding such testing obscures the limitations built into virtually all medical technology and procedures. As a result, people are particularly unprepared when they unexpectedly fall into the very small minority who receive a false negative diagnosis. This was the case of author Emily Rapp, whose child was born with an anomalous and fatal form of Tay-Sachs disease. As she explained in a blog post: “The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative” (E. Rapp 2011). Despite the rarity of her situation, the resulting ethnographic reality that Emily Rapp provides in her compelling account of parenting a child with Tay-Sachs is nonetheless instructive. Such cases are particularly challenging for the creation of a “new kinship imaginary” in the face of a severely foreshortened life. In her influential 2013 memoir, The Still Point of the Turning World, Rapp writes movingly of what it’s like to live with so truncated a horizon as a parent, and how that shifts her understanding of the deep humanity of caretaking: “How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit? Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love, about how to be not just a mother or a father but how to be human” (2013, 11). Although books chronicling parental grief over the loss of a child are a well-known genre, we single this one out because it serves as a cautionary tale regarding the imperfections of medical technology, and the entanglement of expectations of life and death that ensue when it fails. When books such as this are widely reviewed and subject to commentary (as was the case with Rapp’s acclaimed account of a “genetic mistake”), they enter into our “cultural DNA,” stimulating a renewed public conversation about life, death, and disability. Indeed, she chronicles the problematic consequences of the muting

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of such discussions. She writes about bristling “at the lack of information and resources for parents . . . involved in the daily grind of making the short lives of their children as full as possible for two, three, maybe six years at the outward reach” (2013, 12). Her words remind us that attention to medical and scientific arenas too often masks an important site of social significance: the creation of new cultural imaginaries that address the daily challenges of caretaking that some disabilities can require. This is not to deny that medical technologies often offer life-enhancing possibilities, enabling the survival and inclusion of many people with disabilities who in the past might have died or lived under far more limited circumstances. These range from neonatal intensive care units (NICUs) to feeding tubes to breathing technologies and even antibiotics and antiseizure meds. Of course, the question of disability, its cultural location, and technological supports in resource-poor contexts where such interventions are rarely available raises other questions that we address elsewhere (Ginsburg and Rapp 2013). In the developed world, for example, such interventions help sustain the lives of compromised infants, those with spinal-cord injuries, wounded soldiers, the frail elderly, and many others who have benefited from a range of techno-possibilities. Furthermore, turning eugenics on its head, the spread of disability consciousness has given greater support to couples with disabilities who choose to create families of their own, enhancing what the experience of disability means in both the contemporary moment and an imagined future (Finger 1999; O’Toole and Doe 2002).

K I N S H I P, C A R E TA K I N G , A N D T H E N E W N O R M A L

As our chapter thus far makes clear, the category of disability frequently escapes the confines of the medical, establishing the grounds for a “new normal.” Disability imaginaries are constantly reinvented. They reverberate across multiple arenas, from the most intimate realms of sociality shaped by religion, kinship, and family life to schools, to housing, and to community-based forms of recognition. Other arenas in which disability issues are being reframed include a remarkably wide range of arts and letters, along with national legislative and juridical bodies, and international arenas such as the United Nations. These emerging cultural claims on inclusion, from pregnancy decisions to care for those dealing with extreme old age, bring new challenges to families and other intimates whose experiences of living and dying are necessarily shaped by the fact of disability, and the daily life adjustments it entails. In addition to the medical innovations discussed above, a range of seemingly mundane material alterations contribute to a sense of the “new normal” as incorporative of disability. These might include (among other things) the routinization of universal design in the built environment, the incorporation of service dogs, closed captioning and audio description for media, and a variety of other creative accommodations (Becker 1980; Cohen 1998; Layne 1996; Leibing and Cohen 2006: Livingston 2005; MacMakin 2011).

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Such cultural shifts in thinking about living with disability—from kinship imaginaries and daily practices to legislative and judicial interventions—have taken place over the last half century. In particular, the relationship of people with disabilities to their natal families was redefined dramatically in the wake of the movement for deinstitutionalization in the 1970s that required households and families to accommodate unanticipated “returning” members. As a result, caretaking responsibilities in the household and the production of family narratives embracing rather than excluding the fact of disability have required continual creativity, and have moved cultural circuits beyond the intimacy of family life. This sort of “public storytelling” has worked its way into media of all sorts and in many parts of the world, ranging from personal memoirs and television shows to scholarly works that offer compelling perspectives on the “new normal” established by living life with a difference (Bérubé 1996; Frank 2000; Grinker 2007; Phillips 2009; R. Rapp and Ginsburg 2001). A recent exemplary case of such cultural activism, Andrew Solomon’s 2012 book Far From the Tree: Parents, Children and the Search for Identity, tells the collective story of over three hundred families whose children have a range of disabilities and differences such that they “fell far from the family tree” as it was once imagined. Solomon interviewed these parents over a period of ten years in order to understand their experiences of creating family life with children whose differences include deafness, Down syndrome, autism, dwarfism, schizophrenia, multiple congenital disabilities, criminality, transgender identity, being prodigies, and being children of rape. While these categories do not fit together seamlessly, collectively the stories enable Solomon to claim that such families are “united in our differences.” As he writes on his book jacket, “Many families grow closer through caring for a challenging child; most discover supportive communities of others similarly affected; some are inspired to become advocates and activists, celebrating the very conditions they once feared.” Although he doesn’t name these activities as a dimension of caretaking, learning to enact a supportive kinship imaginary makes these cases compelling evidence of the possibilities of living life with a difference. The broad range of families that appear in his book, along with its enthusiastic public reception, illustrate a pervasive hunger for narratives that reflect the evidence of experience of “the new normal” as widespread. A prominent theme in all these works is the significance and life-changing intensity of caretaking as an activity that frequently underscores the particular kind of interdependence that shapes the circumstances of life with a disability. Influential feminist philosophers Eva Kittay and Martha Nussbaum have taken an analytic approach to this topic, using it as an optic to examine the fundamental interdependence of social life. They argue that a recognition of caretaking—in its mundane as well as more extreme forms—is an often unarticulated requirement of real social justice. For example, Kittay attends to “love’s labor” (also the title of her book); by this she means the often unrecognized, mostly unremunerated, and deeply gendered work of caring for family members whose disabilities render them profoundly dependent. Kittay’s work was inspired by her experiences providing constant

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care for her daughter Sesha, born with severe cognitive impairment (Kittay 1999). She develops a sophisticated analysis of the gendered assumptions built into our kinship imaginary via a “dependency critique” of equality: “A conception of society viewed as an association of equals masks inequitable dependencies, those of infancy, childhood, old age, illness and disability” (xi). She champions the political and economic recognition of caretaking labor that human dependency requires and the particular nexus of interdependence that characterizes all family life. Her fellow feminist philosopher Martha Nussbaum (2006) also critiques theories of social justice built on notions of rational autonomous subjects. Speaking as a scholar and devoted aunt to a nephew diagnosed with both Asperger’s and Tourette’s syndromes, she advocates a legal philosophy that accounts for unequal capacity as well as human dignity. Nussbaum asks how we can best extend recognition and the rights of citizenship to those with profound mental and physical disabilities, appreciating that these capacities vary significantly for individuals across the life course. She writes of these instances with an exquisite sensitivity to the ways that legal theory and policy have consequences in daily life: Extreme dependency comes in many forms. . . . Washing the body of a child with Down Syndrome seems vastly easier to contemplate than washing the incapacitated and incontinent body of a parent who hates being in such a condition, especially when both the washer and the washed remember the parent’s prime. So the way we think about the needs of children and adults with disabilities is not a special department of life, easily cordoned off from the “average case.” It also has implications for the way we think about our parents as they age—and about the needs we ourselves are likely to have if we live long enough. As the life span increases, the relative independence many of us enjoy looks more and more like a temporary condition, a phase of life that we move into gradually, and which we all too quickly begin to leave. Even in our prime, many of us encounter shorter or longer periods of extreme dependency on others—after surgery or a severe injury, or during a period of depression or acute mental stress. (Nussbaum 2001)

The implication of Nussbaum’s prescient discussion of not only everyday life but the vagaries of dependency over the life cycle helps “scale up” our analysis. The eruption of disability into public consciousness in places like North America is linked to a transforming demographic reality that we ignore at our peril. A growing number of people are surviving who might not have in the past, from those diagnosed with life-threatening conditions as infants, to people of all ages living with disabilities however they were acquired, to the increasing longevity of people into extreme old age, with all the frailties that might entail. These social facts not only broaden the range of disability awareness but also raise difficult questions regarding both the daily life experience and political economy of care. Indeed, more and more adults with and without disabilities find themselves in the center of what we have come to call the “Intergenerational Vortex of Caretaking” (or IVoC) as kin demands extend across households and life

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cycles. The immediate recognition of this term as accurate, humorous, and dismaying among many of our respondents (who find popular terms such as the sandwich generation too anemic) suggests its resonance with the complexity of their lives as caretakers. A glance at national statistics makes clear that their domestic experiences are very much part of a broader social reality.

DISABILITY AND DEMOGRAPHICS

In the demographic projections from the U.S. Census and accompanying studies, it is evident that the percentage of Americans with disabilities is both an expanding portion of the population and a growing absolute number. To give a rough sense of the scale, as of 2010, the U.S. Census estimates that there were fifty-seven million people with disabilities in the civilian noninstitutionalized population; they constitute 19% of the population. Approximately 15% of these are of school age (between four and twenty-one years of age) while 50% of adults over sixty-five (currently 12.4% of the population) are living with some form of disability, whether or not they comfortably embrace that label (U.S. Census Bureau 2012). By 2030, the elderly population of the United States is expected to grow to 19% of the total population, with significant consequences for the total number of disabled citizens potentially requiring care (Administration on Aging 2013; Knickman and Snell 2002). The implications for the rapid growth of disability as a social category and its attendant consequences in terms of services and caretaking are clearly visible, for example, in the data on two conditions that emerge at different positions in the life cycle. Both have gained considerable public attention in twenty-first-century America: autism spectrum disorders (ASDs) and age-related dementia, particularly with the rise of “the new old age”—the issues that have emerged as many more of our elderly live beyond eighty-five years of age, and some well into their nineties. Together the numbers associated with these diagnoses indicate an escalating presence of disability in daily life, raising questions of caretaking and incorporation of difference into the body politic. A 2008 Centers for Disease Control and Prevention (CDC) study, based on school records, noted the increasing prevalence of ASDs since 2000; the numbers have almost doubled in less than a decade. This research estimates that one in eighty-eight children (aged one through eight) has been diagnosed with an ASD, one that generally requires considerable support (Hoffman 2013). A more recent, 2011 survey by the CDC based on random telephone interviews shows an even higher incidence, “with parents describing 1 in 50 children as having significant social or other challenges” (CDC 2011). Whatever the correct number (and these are constantly contested figures), the implications for social support are clear. As autism expert Deborah A. Fein explained in response to the latter study: “We need to find ways of funding and providing help to these children” (quoted in Hoffman 2013). At the other end of the age spectrum, a recent report suggests that the number of people over sixty-five diagnosed with

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dementia will double by 2040, “skyrocketing at a rate that rarely occurs with a chronic disease” (Hurd et al. 2013). As Donald Moulds, acting assistant secretary for planning and evaluation at the federal Department of Health and Human Services, commented, “The long-term care costs associated with people with dementia are particularly high because of the nature of the disease. People eventually become incapable of caring for themselves, and then in the vast majority of cases, their loved ones become incapable of caring for them” (quoted in Belluck 2013). Dr. Michael Hurd (an economist and lead author of the study), speaking to the implications of this research, made clear that the costs go beyond the numbers, which, he explained “could not capture the full toll of the disease.” In a refreshingly candid if sobering moment on the limits of disciplinary knowledge, Hurd offered an existential reflection on the implications of this study: “‘One thing we haven’t talked about, and it’s not in the paper, is the tremendous emotional cost,’ he said. ‘Economists are coldhearted, but they’re not that coldhearted’” (quoted in Belluck 2013).

T H I N K I N G F O RWA R D

These numbers provide powerful evidence of the significance of the study of disability for anthropologists and others. Despite the social and political progress that has been made toward recognizing full citizenship of people with disabilities in North America and beyond, for many this topic evokes the problems of marginalized identities. On the contrary, we argue that disability should be recognized as central to the human condition and also part of a tectonic shift in our overall social structure, with enormous implications for the political economy of caretaking. Our ethnographic work on disability across cycles of living and dying is helping us to understand how new cultural imaginaries are emerging in many sectors of everyday life. Disability consciousness both erupts and is suppressed continually in many dispersed social locations in which questions of living and dying are never far from the surface. These include but are not limited to in vitro fertilization (IVF) clinics, mothers’ groups, special-education classrooms, activist initiatives, and the popular realm of books, film festivals, television shows, and a mushrooming digital presence (Ginsburg 2012), not to mention the long-standing sites of doctors’ offices and scientific laboratories, where the medical model of disability is constantly reinvented. While their connections are not always evident, collectively they demonstrate the complexity of the doubled telos of modernity we have identified in the cases we discuss in this chapter. As we have followed our subjects and our topic across such multisited domains, we as anthropologists have come to appreciate how ubiquitous disability is as a social fact. The demographic statistics we cite are an instantiation in another register of this recognition. The numbers underscore what our ethnographic allies have been teaching us about their quotidian experiences with the differences that disabilities make. In order to comprehend the impact of the upturn in numbers of Americans with disabilities throughout the life cycle, we have had to tack back and forth between the

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intimacy of qualitative interviews and observations that offer insight into their experiential reality, and the abstractions of population trends. Social policy needs to take both these levels of concern into account, yet qualitative knowledge drawn from the daily life is too frequently sidelined. As we carry out research that attends closely to living, dying, and disability, we feel compelled to pose questions that we hope anthropology can illuminate. Why is it that we rarely hear of disability in political debate, even when a vicepresidential candidate is carrying around a child with Down syndrome? What kinds of resources are implicated if we are committed to a world that embraces inclusion and the necessary supports for people with disabilities to live as fully as possible in their communities? This is a particularly complicated question to address in an increasingly neoliberal zeitgeist where public expenditures are constantly at risk. For example, day programs for the elderly with dementia are under siege coast-to-coast, while school systems are struggling to provide basic related services for children with newly diagnosed disabilities. At the same time, the initiatives of people with disabilities and their supporters are changing the face of both public and private culture, slowly but surely. Beyond accessibility ramps (Russell 2002), we now have many accommodations that were unimaginable even two decades ago: closed captioning on television, service dogs on buses and in courtrooms and department stores, programs for those with autism and Alzheimer’s in museums, and adaptive technologies built into digital tablets—to mention a few relatively recent innovations. Given the inevitable increase in disability across the life cycle sketched in the demographic profiles above, we predict that the shape of the “new normal” will continuously be under constant negotiation. As the disability rights activists with whom we work have taught us, we all have skin in this game. The lessons we learn from embodied difference are certainly not dead yet.

N OT E S

We thank Veena Das and Clara Han for calling this essay into existence and for their patience with delays resulting from our own adventures in disability worlds. We are grateful to the Spencer Foundation and the NYU Institute for Human Development and Social Change for their support of this work, as well as to the many people who generously shared their stories with us. We also want to acknowledge with gratitude the excellent bibliographic assistance of Dr. Alison Cool. 1. Terri Schiavo was a young woman who at age twenty-seven, in 1990, suffered a cardiac arrest resulting in massive brain damage. She was put on prolonged life support and continued to live in a persistent vegetative state. Her husband’s wish to terminate life support for her was challenged by Schiavo’s parents; she stayed on life support due to state and federal legislative intervention until 2005, when life support finally was terminated. The controversial case became a public social drama attracting strong opinions and extensive multimedia coverage in support of both sides. 2. The rollout of NIPT has already begun, with twenty-seven academic medical centers in the United States and several national health ministries in Western Europe testing these new

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diagnostic technologies on women deemed high risk who also receive amniocentesis and/or sonograms so that results can be compared.

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Leibing, Annette, and Lawrence Cohen, eds. 2006. Thinking about Dementia: Culture, Loss, and the Anthropology of Senility. New Brunswick, NJ: Rutgers University Press. Livingston, Julie. 2005. Debility and the Moral Imagination in Botswana. Bloomington: Indiana University Press. Lo, Y. M., N. M. Hjelm, C. Fidler, I. L Sargent, M. F. Murphy, P. F. Chamberlain, P. M. Poon, C. W. Redman, and J. S. Wainscoat. 1998. “Prenatal Diagnosis of Fetal RhD Status by Molecular Analysis of Maternal Plasma.” New England Journal of Medicine 339 (24): 1734–38. Longmore, Paul K., and Lauri Umansky. 2001. The New Disability History: American Perspectives. New York: New York University Press. MacMakin, Mary. 2011. “Women with Disabilities.” In Land of the Unconquerable: The Lives of Contemporary Afghan Women, edited by Jennifer Heath and Ashraf Zahedi, 200–211. Berkeley: University of California Press. Not Dead Yet. N.d. “About Not Dead Yet.” www.notdeadyet.org. Accessed June 15, 2012 Nussbaum, Martha C. 2001. “Disabled Lives: Who Cares?” New York Review of Books, January 11. Accessed September 24, 2012. www.nybooks.com/articles/archives/2001/jan/11 /disabled-lives-who-cares/. ———. 2006. Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge, MA: Belknap Press; Harvard University Press. O’Toole, Corbett Joan, and Tanis Doe. 2002. “Sexuality and Disabled Parents with Disabled Children.” Sexuality and Disability 20 (1): 89–101. Parens, Erik, and Adrienne Asch, eds. 2000. Prenatal Testing and Disability Rights. Washington: Georgetown University Press. Pernick, Martin S. 1996. The Black Stork: Eugenics and the Death of “Defective” Babies in American Medicine and Motion Pictures since 1915. New York: Oxford University Press. Phillips, S. D. 2009. “Civil Society and Disability Rights in Post-Soviet Ukraine: NGOs and Prospects for Change.” Indiana Journal of Global Legal Studies 16 (1): 275–91. Rapp, Emily. 2011. “Notes from a Dragon Mom.” New York Times, October 15. Accessed June 20, 2013. www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom .html. ———. 2013. The Still Point of the Turning World. New York: Penguin Press. Rapp, Rayna. 2000. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge. Rapp, Rayna, and Faye Ginsburg. 2001. “Enabling Disability: Rewriting Kinship, Reimagining Citizenship.” Public Culture 13 (3): 533–56. ———. 2007. “Enlarging Reproduction, Screening Disability.” In Reproductive Disruptions: Gender, Technology, and Biopolitics in the New Millennium, edited by Marsha C. Inhorn, 98–121. New York: Berghahn Books. ———. 2011. “Reverberations: Disability and the New Kinship Imaginary.” Anthropological Quarterly 84 (2): 379–410. ———. 2012. “The Paradox of Recognition: Success or Stigma for Children with Learning Disabilities.” In Contesting Recognition: Culture, Identity and Citizenship, edited by Janice McLaughlin, Peter Phillimore, and Diane Richardson. London: Palgrave. Roberts, Dorothy E. 2009. “Race, Gender, and Genetic Technologies: A New Reproductive Dystopia?” Signs 34 (4): 783–804.

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Russell, Marta. 2002. Beyond Ramps: Disability at the End of the Social Contract. Monroe, ME: Common Courage Press. Samerski, Silja. 2009. “Genetic Counseling and the Fiction of Choice: Taught Self
Determination as a New Technique of Social Engineering.” Signs 34 (4): 735–61. Saxton, Marsha. 2000. “Why Members of the Disability Community Oppose Prenatal Testing and Abortion.” In Prenatal Testing and Disability Rights, edited by Erik Parens and Adrienne Asch, 147–64. Washington: Georgetown University Press. Sayres, Lauren C., Megan Allyse, Taylor A. Goodspeed, and Mildred K. Cho. 2012. “In the Public Interest?” Science Translational Medicine 4 (144): 144fs23. Schweik, Susan M. 2009. The Ugly Laws: Disability in Public. New York: New York University. Singer, Peter. 1993. Practical Ethics. Cambridge and New York: Cambridge University Press. ———. 1995. Rethinking Life and Death: The Collapse of Our Traditional Ethics. New York: St. Martin’s Press. Solomon, Andrew. 2012. Far from the Tree: Parents, Children and the Search for Identity. New York: Scribner. Stern, Alexandra. 2005. Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America. Berkeley: University of California Press. U.S. Census Bureau. 2012. “Profile America Facts for Features: Anniversary of Americans with Disabilities Act: July 26.” U.S. Census Bureau, July 25. Accessed June 20, 2013. www .census.gov/newsroom/releases/archives/facts_for_features_special_editions/cb12-ff16 .html.

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31 SUFFERING FROM EVIDENCE Expertise, Racial Health Disparities, and the Case of Jerry

Carolyn Moxley Rouse

Jerry was a thin, light-skinned African-American who suffered from sickle-cell anemia. The hallmark of the condition is acute painful episodes, comparable to advanced bonecancer pain. These excruciating events are often treated in hospital emergency rooms, where patients are given access to severely restricted Schedule II pain medications. For a number of reasons, many sickle-cell patients find that they are denied access to opiates like oxycodone and morphine, or denied the necessary dosage to adequately relieve their pain. Jerry explained to me why he had been denied access in his home state. jerry:

carolyn: jerry:

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Drugs are drugs, legal or illegal. There are some benefits to them and then there are some uncool benefits to them. When you’re talking about [illegal] drugs for profit or gain, I got a problem with that. When you’re talking about [legal] drugs to resolve certain medical issues, I understand it, but it still [is about] profit and gain. I got problems when people who may have minimal chronic illness, or minimal chronic pain, who get one hundred tablets of Percocet and don’t need them. And then sell them for profit. And then someone like myself can’t get them. Why can’t you get them? Because I’m labeled as, um, I’m labeled as a drug seeker. [Voice becomes confident and strong.] I’m labeled as a drug seeker. Are those in your medical records? Yes. They’re in my medical records and I mean, it still goes back to the stigmatization that they have in terms of sickle-cell patients. I’m fifty-nine

years old. My first experience with drugs was probably age five. And I’m saying probably because that’s the only thing that calmed me down when they diagnosed me with sickle-cell. I grew up taking legal drugs. It wasn’t no question.

In this excerpt, Jerry highlights the questionable distinction between legal versus illegal drugs. Given his decades of experience with prescribed Schedule II drugs, it made little sense to him that his occasional use of illegal drugs like marijuana and cocaine to alleviate pain cost him access to prescription opiates. After a positive urine test, Jerry was disallowed prescription pain medications for six months, at which point he tested positive again. It took two years and three months for him to be allowed access to Schedule II prescription narcotics again. Regardless of his medical status as a drug seeker, Jerry lived daily with levels of pain most people could only image. His solution was to purchase legal medications illegally from friends at exorbitant cost—as much as five dollars a pill: “There has been times when I’ve literally suffered and ended up . . . buying legal drugs off the street to maintain my level of productivity and function.”1 Given that the drug that provided Jerry the greatest pain relief was marijuana, a drug that was legal in many states, how do we understand mandated medical monitoring of patients? The medical rationale is that patients can become more dependent, can become tolerant, or can develop hyperalgesia. But, as has been noted in a number of ethnographies, forms of drug dependency and the leading of a functional life are not mutually exclusive (Bourgois and Schonberg 2009; Campbell and Shaw 2008). Jerry was indeed highly functional when he was not in pain. He had a job and a postgraduate education. He was married and had raised two children. So rather than protect Jerry from himself, or society from a dangerous drug addict, the highly bureaucratic drug-monitoring regimen practiced at the discretion of Jerry’s physician protected the institution and the profession. In the clinic, current models of health care try to bring together evidence-based medicine (rational action) and consumerist models of care (individualism). In theory, evidence-based medicine is supposed to push back against physician bias, and patientdirected care against paternalism. Both approaches have been treated as possible solutions to racial health disparities. However, trying to bring together best practices with patient-centered care has produced only confusion and ambiguity. These slippages allow doctors to choose either to assert the authority of medicine by demanding that patients submit to their authority or lose access to care; or to let a patient make his or her own decision just to free the doctor and the institution from responsibility for a bad outcome. In complete contradistinction, best evidence-based practices are sold as available on demand—a consumerist approach to care suggested in advertisements for integrative medicine and personalized care. Because these approaches contradict one another, what we see in the clinic is that both approaches do a better job of limiting the liability of the institution than in equalizing

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treatment outcomes across racial and socioeconomic lines. In calculations of whom to treat, the state’s interests are often far less relevant than the simple need for the institution to maintain its legitimacy and financially viability. And it is important to note that institutional legitimacy requires proof not only that an institution provides care; the institution must show that it limits care as well. A medical institution must demonstrate that it is not simply a drug dispenser, not open to every patient demand, and not open to unethical experimentation. When it comes to demarcating the borders of professional expertise by limiting care, African-Americans become useful subjects. This chapter explores the role of expertise, in this case medical expertise, in the reproduction of racial inequities. Anthropological work on race and inequality in the United States tends to focus on how relations of domination produce political and personal subjectivities that range from protective to pathological (Gwaltney 1993; Jackson 2005; Jacobs-Huey 2006; Liebow 1967; Mullings and Wali 2001; Stack 1974). This literature describes how religious, artistic, economic, and/or political identities are forged in part by threats to the integrity of the social body, and how identities have the potential to ward off abjection (Frederick 2003; Alim 2006; Matory 2005; Rouse 2004a). While most of the research on race in the United States describes in ethnographic detail how subjectivities respond to external assaults, far less of the anthropological literature theorizes whether the post-civil-rights state is engaged in a project of racial exclusion or whether continued racial disparities are second-order phenomena produced by cultural patterns beyond the interests of the state (Gregory 1999; Ramos-Zayas 2003). The answer to this question leads us to consider what type of postnormative state (postracial, postcolonial, or otherwise) the United States has become. Whether or not inequities are a product of the state or of forces beyond the state is not simply an academic question. Civil rights legislation ensured that there would be financial and legal consequences for those held responsible for discriminatory acts. In keeping with this mandate, the federal government now requires that institutions, including state institutions, either find justification for their exclusionary practices or ameliorate them. The only allowable exception is if civil rights legislation infringes on individual liberties or impedes free-market capitalism. What we find in negotiations over, for example, the Americans with Disabilities Act is that these sometimes competing legal mandates leave plenty of room for negotiation (Greenhouse 2011, 87–88).2 Critical race scholar Kimberle Crenshaw argues that civil rights law was effective in reducing symbolic forms of discrimination but not material inequities. As she states in an article on legal retrenchment, “[A]ntidiscrimination discourse is fundamentally ambiguous and can accommodate conservative as well as liberal views of race and equality” (Crenshaw 1988, 1335). Given this ambiguity, state attempts at adjudicating social justice are more akin to directing improvisational theater than refereeing a game with clear winners and losers. Rather than acting authoritatively, the state allows competing claimants to present an array of discursive and administrative arguments that speak less to truth and fact than to a kind of social-justice aesthetic. The elements of this aesthetic include everything

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from behind-the-scenes power and influence to appeals to a national sense of fairness read through personal narratives, history, and iconic signifiers. Importantly, the performative aspects of social justice and law, including tropes about race, are often disconnected from the day-to-day experiences of American citizens. An example of this would be the attempt by Health and Human Services to equalize racial and ethnic health outcomes by 2010. Although a valiant effort, the Healthy People 2010 initiative defined the relevance of race and ethnicity at the state level in ways that barely mapped onto how race and ethnicity organized people’s lives at the community level. Healthy People initiatives started in 1979, and every decade since health leaders have established new national health goals. In 1998, President Clinton, along with Surgeon General David Satcher, announced that the 2010 goal would be to understand and eliminate the causes of racial and ethnic health and health-care disparities. The state rightly handed authority for managing these goals over to medical and policy experts. These experts were then allowed to authorize the research questions, methodologies, and conclusions. They chose as their gold standard evidence-based research or randomized control trials, which, intentionally or not, invalidated other forms of knowledge production. In the end, Healthy People 2010 produced almost no significant changes in racial health disparities.3 As well-meaning as these efforts were, the state–institution–experiential disconnects meant that this approach to health-care justice was bound to fail. It is important to note that by ceding its authority to medical experts, the state can hardly be characterized as the emissary of racial exclusions except by proxy. Michel Foucault’s biopolitics is not, importantly, a suitable analytic for understanding race and medicine in the United States. The question we need to ask is, What are the characteristics of medical expertise such that it is unable to ameliorate disparities generally (read through national data), but able to produce uneven improvements at the local level (read through regional data)? This means that when it comes to higher rates of black morbidity and mortality, we must examine institutions like health care—or, more specifically, the clinic. Healthy People 2010 was supposed to focus specifically on differential treatment in the clinic. This meant that physicians and health-care institutions were being studied as the possible purveyors of racist discrimination. For the first few years of the initiative, differential treatment by doctors was documented, but was soon followed by research attacking the assumptions, methods, and conclusions of these studies. As a qualitative researcher, I, too, was critical, but for different reasons. My first concern was that differential treatment certainly exists, but that this does not always mean that it is worse care. Less medical care sometimes improves health outcomes and quality of life (Chen et al. 2001; Temel et al. 2010). Health-care access is certainly important, but as Joseph Dumit argues, there is also surplus health (Dumit 2012). Many of the causes of differential health start at birth and are the result of inequities outside the domain of health care. My other criticism was that all of these studies were divorced from any mandate to restructure health care. The abstractness of these studies made it impossible for hospital

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administrators, who have real financial constraints and work with populations with particular health issues, to know what to do with this evidence-based knowledge. My final concern was that the data was using race and ethnicity in ways that were so disconnected from the experiences of patients and doctors that, under the threat of being called racists, medical experts began to retrench. Health-disparities researchers pulled back from studying differential treatment by doctors and institutions, and began instead to attack the entire premise of Healthy People 2010. They did so with a challenge to the quality of statistical proof. Expert knowledge then became the means for rationalizing differential treatment in the clinic. This was not done at the state level. Instead it was physicians, epidemiologists, and policy experts— often academics—who published against the thesis that differential treatment in the clinic produced health disparities. Expertise has become the way by which most racial inequality is reproduced in “postracial” America. The evidence used to explain racial inequities now relies on behaviorist arguments that simply state that black people are sicker, poorer, and in prison at higher rates because they lack certain behavioral capacities (Herrnstein and Murray 1994; Klick and Satel 2006). Culture-of-poverty arguments have found new life in neuroscience, behavioral economics, neuropsychology, and neuroeconomics, and the list of sub-subdisciplines devoted to scientized behavioral research keeps growing. This chapter focuses on the story of a chronically ill sickle-cell patient whose struggle with health-care access demonstrates the stakes of these behavioral narratives, which are best described as forms of misrecognition (Balibar 1991). The ways in which Jerry was misidentified in the clinic produced a cascade of institutional and administrative hurdles that profoundly impacted multiple aspects of his life.4 Rather than describe these effects as motivated by state interests, I argue that the clinic space is where medical professionals are asked to act rationally. Since there is so much uncertainty in medical care for chronic illness, reasonable action becomes that which mimics a modern commonsenseness. In the behavioral literature, these dispositions of reason, morality, and intelligence are contrasted with black pathology and dysfunction. Racial exclusions are made, therefore, in one-on-one encounters where the stakes are claims to rationality and the evidence in evidence-based medicine is linked to race. Power, in these instances, is fragmentary and deployed by individuals who perform expertise for reasons that range from maintaining one’s ego to maintaining one’s job to faith in positivism. This representation of the clinic contrasts with Michel Foucault’s theory of biopolitics that describes the modern state as an entity bent on expanding its power and reach through modernizing projects like population health (Redfield 2005). In Foucault’s reading of the state, the state’s goal is to produce healthy, educated, and identifiably loyal European subjects.5 In the United States, African-Americans like Jerry have remained loyal to the state: fighting in wars, embodying the American work ethic, and/or participating in religious organizations. Despite centuries of attempts to be treated as subjects

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of American progress and history, blacks still occupy the savage slot as articulated in the eighteenth and early nineteenth centuries by, for example, Georg Hegel, Immanuel Kant, and David Hume.6 The characterization of blacks as lacking reason became housed in the scientific racisms of the nineteenth and early twentieth centuries. Now these essentialist discourses have found yet another home in the behavioral sciences and the quasigenetic and deterministic neurosciences of the late twentieth and early twenty-first centuries.7 The inability of blacks to take advantage of American freedom and opportunity is now “scientifically” traced to everything from maternal behavior while pregnant to mothers not speaking enough to young children.8 Put simply, the biopolitics model of state power and concern for the citizenry does not map onto the experiences of AfricanAmericans. In the literature on expertise, institutions like finance, law, and the state are described as having fragmentary power given that they are the product of an array of ethical discourses and bureaucratic practices (Maurer 2005). Ethnographers have also shown how technical expertise is not simply deployed, but rather creatively reworked in order to suit the ethical and social needs of the moment (Zaloom 2003; Mitchell 2002). Almost all the work on expertise points to the space of uncertainty, where rationalization meets social and biological complexity. It is in this space that expert knowledge turns to an array of cultural discourses upon which to scaffold “proof” (Choy 2005). With respect to racial health-care disparities it becomes critical to examine the ways in which evidence in the clinic is entangled in commonsense notions about black Americans: that they prefer welfare to work, are disorganized, lack self-control, and are intellectually inferior. Instead of looking at the state as leading the reproduction of racial exclusions and health disparities, it has become clear that we must look to how expert knowledge is produced and deployed in the intimate space of the clinic. Jerry’s story offers us a window into the limits of even the Affordable Care Act to equalize health access and outcomes. Rather than providing treatments that supported Jerry’s aspiration to be self-sufficient and live with minimal pain, Jerry was denied access to medications based on criteria that had very little to do with Jerry’s health. Drug monitoring, it seems, was an attempt by physicians to manage the borders of illicit versus licit drug use, or—put slightly differently—to manage the borders of experiential versus evidence-based approaches to treating pain and debility (Manchikanti 2008). If many illicit and licit drugs are effectively similar for patients like Jerry, what treatment expertise does a physician versus a pharmacist provide? With respect to deciding who has the authority to validate Jerry’s suffering—physicians, nurses, pharmacists, lay healers, drug dealers, or Jerry—what is at stake are the borders of professional medical expertise and methods for demarcating the science and art of medicine. In other words, race played a role, but instead of prohibiting Jerry’s access based on his race, access barriers were rationalized as evidence based. These same protocols are used for white patients, but since drug testing is done at the discretion of a physician, we can assume, given our extraordinary disparities in rates of incarceration for drug offenses,

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that white patients are less likely to be tested (Bloche 2001, 95–126; Alexander 2012, 97–139). We also know, from numerous studies, that black patients receive far less pain medication for comparable conditions (Anderson, Green, and Payne 2009). While it is true that evidence-based medicine can be a useful tool for improving African-American access to health care, much more research needs to be done to recognize how evidence-based approaches to health care leave plenty of room for physician bias to enter into the clinic (Rouse 2009). Jerry’s suffering and life struggles offer an example of how the narrowness of an evidence-based treatment gaze may be far from “rational.” In Jerry’s story, what we find is a willingness to withhold medications regardless of the positive or negative impact on his life or health.

J E R RY

Given that the science of pain treatment and addiction are still in their infancy, Jerry’s clinical experiences are framed more profoundly by art and aesthetics than science. For one, many legal and illegal drugs have the same effect on the body, making unclear the rationale behind the licit/illicit distinction. Second, Jerry’s race and economic class impacted how he was diagnosed and treated, and whether he was drug-tested. And third, Jerry’s suffering was read narrowly through the medical gaze without appreciation for the complicated ways in which he improvised living with a chronic illness (Kleinman, Das, and Lock 1997). This means that many of his treatments, even evidence-based, did not actually improve his health or quality of life. There are many sickle-cell patients who argue that using legally prescribed pain medications causes secondary complications and more pain, and even hastens death.9 Jerry’s physical pain was only a part of his life. He still had to make a living and maintain relationships. His safety net was his network of friends and family, who exchanged not only love but services, goods, and often a place to live. Jerry had to nurture these relationships or fall through the only safety net somewhat under his control. Right now I’m in a very devastating state of mind. Is it because of the disease? Part of it is. I’m borderline homeless. I’m living with a cousin right now all the way down in Maryland. He took me in. I just recently divorced. . . . And sickle cell patients have a tendency to have this big open heart and I’m using a generalization but I see it like this. We’ve been sick all of our lives. We’ve always seeked help from other people. We’re so grateful because we get the help that we tend to open ourselves with our hearts to help others.

jerry:

Pain made it difficult for Jerry to get to work and difficult to maintain the exchangebased relationships that obligated him to give in order to receive support from others. Punishing Jerry for using illicit pain medications by forbidding his access to prescription pain medications treated his suffering with pain and debility as unrelated to the economic

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insecurities that have become part of the lives of so many urban lower-middle-class African-Americans. In our conversation, Jerry described a typical day: jerry:

Getting up at four o’clock in the morning. Getting ready to leave at five o’clock in the morning. Sit around, wait two hours for my bus. Go to work. I’m in the classroom three hours out of the day and two hours I’m just wasting. Come back. Do the routine all over again and still have enough time to do the little extra things that I like to do like sit on the computer and creatively design and things of that nature. But this past week, I took four buses to just go get my paycheck. And then the elements with the humidity, the rain, and hurting the whole time and didn’t have one pill to take. I mean literally hurting the whole time. And walking without a cane.

Even without access to prescription pain medication, Jerry rarely missed a day of work. The logic of denying pain medication to a by all accounts functional adult makes little sense. If Jerry were unable to maintain a job or continue his education, then perhaps a urine test would be justified. But according to his sickle-cell nurse, doctors read Jerry through the dominant narrative about black dysfunction. This is one of the most significant ways in which Jerry was misread in the clinic. Self-efficacy is a term used by physicians to describe a chronically ill patient who does not need family, friends, or significant medical support in order to flourish and stay healthy. The medical literature argues that in order for patients to practice self-efficacy, they must strictly follow the medication regimens determined by a physician. But more important, they must do their best not to overuse or become dependent on medical care. The self-efficacious patient can best be described as a kind of Horatio Alger in the clinic. But chronically ill patients who are stoic and self-effacing in order for physicians to like and respect them, using what sociologist Janet Shim calls cultural health capital, avoid demanding treatment at their own peril (Shim 2010; Rouse 2011). Despite the potential negative health outcomes that can come from rejecting treatment, Jerry, like most sicklecell patients I have interviewed, takes pride in being independent. jerry:

If I keep complaining, that’s negativity going through my body. If I keep looking at “It will be better,” being optimistic, that’s positive energy going through my body—knowing that it will be better. I have a strong belief that I can do whatever I can do based on the power I am given. I guess you can do all things through Christ who strengthens you.

In the clinic, signifiers like race, class, gender, dress, occupation, and speech are factored into how patients are read as either dependent or independent, inappropriate or appropriate. But what does it require to be an independent chronically ill adult? For

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most sickle-cell patients, self-efficacy requires dependence on health-care services as well as family and friends. If we follow the lives of sickle-cell patients like Jerry, for example, drug use is part of self-efficacy and self-sufficiency. Dependence facilitates independence. Jerry was dependent on pain medication for good reason, but he was not an addict. An addict could not function without pain medication, but Jerry could. In fact, Jerry was proud of the fact that for his entire adult life he had defied expectations. jerry:

I can’t count on my hands and toes how many jobs I’ve had. My earnings is poverty level. My education is higher than the standard person having sickle-cell. And I don’t want to discredit anyone because I ran into some sickle-cell patients who haven’t even gotten their high school diploma. In fact, I’ve been trying to encourage them to get their GED or something. I have a bachelor’s plus. It was hard and long because the only graduation I was able to walk across the floor on was when I got my bachelor’s degree. That’s the only one. My high school, my certificate program—none of the other programs was I there physically because I was hospitalized. My high school graduation I was hospitalized getting eye surgery. When I was graduating around to American Business School, and they had a big graduation, I was hospitalized having six inches of my lower intestine removed because it was gangrene because of a previous operation. I haven’t had no other opportunity. In my lifetime, if the Lord keeps blessing me, I’m going to walk across somebody’s floor with a doctorate. I don’t know if it’s possible. I’m having a hard time finishing my master’s [laughs]. I don’t know, anything’s possible.

At the time I interviewed Jerry in 2012, he was finishing his master’s degree in technical management from a state college, and he had a job teaching computers to incarcerated youth. He also set himself up as a small business, which meant that he could do computer consulting and make as much as thirty-four hundred dollars a month over and above his disability benefits without losing them. This was in contrast to the twelvehundred-dollar limit for standard employment. His business license allowed him to bank money for the months he was too sick to work. Jerry was highly functional, and with pain medication he was able to do more and suffer less. In the United States, it’s important not to confuse homelessness with joblessness or lack of education. Jerry was the perfect example of this. He taught computer skills in two juvenile-corrections facilities, getting up at 4:00 a.m. in order to catch the first of several buses to get to his jobs. He then taught two three-hour classes about which he said, “I’m teaching kids how to use the computer to better their life when they get out, and some of these are hard-core criminals. Though they are juveniles, they are hard-core. A lot of it is drug related. Drug trafficking, firearms violations, auto theft, burglary.” Although Jerry had never been in trouble with the law, he acknowledged that fractions of a degree separated him from the children he worked with. He easily imagined himself in their place given his economic class and race. He achingly described how one of the sixteen-

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year-olds was being sentenced such that his juvenile drug-trafficking record would never be sealed: “So he’s set up to fail in life. I mean as far as I’m concerned, he’s in my class but he will never be able to use his skill because he won’t be hired by anyone because they are not going to trust him because his case will never be sealed or closed. It’s kind of interesting the way the system is set up.” Jerry was well aware that racial disparities, from health care to incarceration, were entangled in administrative logics that set black people up for exclusions of all sorts—from medical to, in the case of the sixteen-year-old, citizenship. Over a year after interviewing Jerry I learned that he had once again been granted access to prescription pain medications. Passing several drug tests over a two-year period meant that his health insurance would once again reimburse his prescription pain medication. With respect to his work and educational aspirations, though, very little had changed. He was still employed in low-wage jobs, still working toward his master’s degree, and still struggling with homelessness. Importantly, the punishment Jerry received for testing positive was never meant to help him. He did not receive drug counseling (which he arguably did not need), housing, or medical treatments to help him with his pain. What the punishment did was encourage him to find better ways to avoid getting caught.

DISCUSSION

What is most peculiar about the persistence and even growth of racial disparities since the 1960s is that they occurred as state and nonstate institutions began to take an active role in attempts to ameliorate them. Foucault’s descriptions of the role institutions play in enacting and operationalizing state discourses suggest a state with an interest not only in disciplining subjects, but in helping its subjects become “modern.” For example, Foucault describes the imperative of French military schools in the nineteenth century to create vigorous, competent, qualified, obedient, and moral subjects (Foucault 1995, 172). The architect of these schools imagined a place where students’ physical, academic, political, and spiritual educations were built around the latest “scientific” approaches to human engineering. With respect to the clinic in the eighteenth century, Foucault says about the emergent medical gaze, “For clinical experience to become possible as a form of knowledge, a reorganization of the hospital field, a new definition of the status of the patient in society, and the establishment of a certain relationship between public assistance and medical experience, between help and knowledge, became necessary; the patient has to be enveloped in a collective, homogenous space. It was also necessary to open up language to a whole new domain; that of a perpetual and objectively based correlation of the visible and the expressible” (Foucault 1994, 196). One can say many things about the encompassment of the French state and the sometimes brutal assertion of state power. But from the perspective of African-American social history, at least the state had an interest in homogenizing rather than differentiating modern and nonmodern subjects. The modern American state is built on notions of free will and meritocratic reward, and Americans willingly subscribe to this fiction, even Jerry. Americans accept that a

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small percentage of modern subjects deserve their wealth because there exist subcategories of American citizens who are unable to take advantage of their freedom. These premoderns lack the work ethic, organization, reason, and a moral character to attain the good life. The (white) modern subject, in this mythic binary, is made legible only against (black) premodern subjects (Gikandi 2011). I put the races in parentheses because without black modern subjects like President Obama, and white premodern subjects like hillbillies, the illusion that “this is not about race” would fall away. As a foil, black “social pathology” and a black “culture of poverty” render American exceptionalism and freedom real and just. Reiterations of black dysfunction in the behavioral sciences and journalistic screeds may not be represented statistically—for example, whites and blacks are in an almost statistical dead heat for levels of legal and illegal drug overuse—but without the narrative, racial disparities in education, health, wealth, and incarceration might cause shame, guilt, maybe embarrassment. It might even force a reassessment of just how enlightened we are. President Reagan promoted corporate deregulation and individual freedom at the same time that the rates of black incarceration skyrocketed and health disparities retreated back to pre-civil-rights ratios (Alexander 2012; Levine et al. 2001). Before Reagan, from 1950 to 1980, Jerry’s father made a living at a leather company and was able to support his wife and five children on one salary. His father even purchased his own house in the city: “My father being a hard-working man made sure I had the best medical coverage you can provide to a person of our class. We were at the time middle-class. Not overly wealthy, but . . . with his job he was able to provide top medical coverage up until I was twenty-one.” Today, even with insurance Jerry has not been protected from interactions in the clinic that left him puzzled: “Still, if I had been white, with any type of other disease, what kind of respect, resources, and availability would I have, to do what I need medically? I have struggled with this disease. I’ve been labeled all kinds of things. How can you come into the hospital, be in pain, the pain unfortunately was around my groin area, and whoever’s examining me says that I have some type of venereal disease? [The test] came back negative. ‘What’s the diagnosis here? I’m telling you I have sickle-cell. You brought me in. You didn’t give me no IV. Fluids is the first thing that you’re supposed to have.’ Now my question would be, If I was white, would I have been through all of that?” Jerry is, in some ways, better informed about what constitutes best practices when it comes to him than the medical professionals he must deal with. Before ending our interview Jerry said: jerry:

carolyn:

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I’m blind in one eye since the age of thirteen. I have avascular necrosis of the hip and necrosis of the bone marrow in my shoulders and my hips. My hips are deteriorating so rapidly that I actually have been fighting off the hip replacement for twelve, thirteen years now. Why?

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jerry:

I’ve been paranoid about hip replacement. The other patients that I know who have gotten hip replacement that have sickle-cell, after being opened up, they only survive five, maybe six years. I mean that’s my research, and it’s not like I’m doing it on the Internet, I’m talking to people. Titanium hip is the better hip to have replaced in your system. You might get a life expectancy of ten years. I’ve already had three treatments on my hip, but the one on the right is deteriorating much more rapidly. According to my orthopedist, the bone marrow in my hip is paper-thin. He’s honestly afraid that my hip is going to collapse. Right now he’s pressuring me to have the hip-replacement surgery. I scheduled it in March, but I postponed it because my life . . . I’m not stable right now. I mean it’s too much unstableness for me to really recuperate. And then there’s the other factor of income. There are times I can get up and I physically feel bone rubbing against bone. There are times when . . . this past week in fact. I mean right now I’m moving and all. I feel the bone itself. I mean I’m not in no pain, a little discomfort, but on a scale of one to ten I’m at a two. That’s where I’m at because I’ve been able to take a little medication [conspiratorial laugh] along the way.

In the clinic, Jerry’s rejection of a hip replacement was read as a sign of his inability to reason—a conclusion that gave professionals more evidence for considering his use of illegal drugs detrimental to his ability to function. But when set against an internal analysis that came out six months after our interview, Jerry’s experiential knowledge seems less like the ravings of a lunatic and more like a riddle. The analysis by Johnson & Johnson showed that their chromium-and-cobalt articular surface replacement (ASR) for hip-resurfacing arthroplasty (hip replacement) had a 40 percent failure rate within five years (Meier 2013). In one FDA adverse-event report, a patient’s cobalt and chromium levels were so high the physician ordered a new hip replacement and the patient was tested for cobalt-induced cardiomyopathy.10 And herein lies the dilemma: Jerry is at the mercy of professionals who for professional and institutional reasons must adhere to treatment regimens built on abstracted randomized studies. These statistically significant findings, like the ASR that went through extensive testing before being allowed on the market, are rarely tested against the types of experiential knowledge that Jerry has had to learn in order to survive. This means that whatever illegal medication he used to dull the pain in his hip in order to avoid surgery may have actually extended his life. But his resistance to medical authority also cost him access to medications that, when available, have made his journey through life less complicated and less painful. CONCLUSION

Scholars of inequality continue to scratch their heads about why a country that elected a black president for two terms continued, in the early part of the twenty-first century, to

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produce such vast racial health, educational, and incarceration disparities. Rather than look toward the state, or biopolitics, as the cause of continued exclusions, I argue that racial inequality is often a second-order phenomenon, or an emergent phenomenon caused, in the Aristotelian sense, by material and nonmaterial cultural forms. In this case, I focus on expertise that causes patient misrecognition. Racial disparities are reproduced in spaces where quasi-objective behavioral categories—for example, self-efficacy—are grafted onto quasi-scientific rationales—in this case, drug dependency. Racial disparities are made worse when the punishment produces and then amplifies the original justification for exclusion. In the case of Jerry, loss of access to prescription medications made it more difficult for him to function, reinforcing a physician’s sense that Jerry lacked self-efficacy. Having followed many wonderful physicians who work with African-American sickle-cell patients, I am led to conclude that strategies of exclusion are not the product of conscious bias. The physicians recognized that whatever they do to increase patient access would have to be evidence-based in order to be institutionalized. These evidence-based approaches are supposed to supplant professional subjectivities. What is forgotten or ignored is how much medical uncertainty exists, particularly in the case of chronically ill adults. Behaviorist social science, most of which is common sense standing in for fact, is then used to interpret patients rather than symptoms, and to rationalize choices based on evidence-based medicine without seriously interrogating whether evidence equals truth.

N OT E S

I want to thank Jerry, and also Nina Anderson, PhD, his nurse practitioner. Nina, who is African-American, first described Jerry to me during a meeting where we discussed her struggle to make patients like Jerry legible to physicians and institutions. I was so intrigued that she arranged for me to interview Jerry. Nina was present at the interview. The name “Jerry” is a pseudonym. 1. In the case of the 1990 Americans with Disabilities Act (ADA), for example, employers can legally justify noncompliance by claiming that the ADA reduces their economic competitiveness. So, if the goal of civil rights legislation was to make discriminatory acts unambiguous, it failed. 2. In a paper entitled “Racial Health Disparities and Questions of Evidence: What Went Wrong with Healthy People 2010,” I describe in depth the history of the program, the evidence used, and the ultimate outcome of the initiative. 3. This conclusion is similar to Michelle Alexander’s (2012) finding that whether or not an African-American is guilty, an arrest sets off a series of falling dominoes that ends in social and economic disfranchisement. 4. In “The Politics of Health in the Eighteenth Century,” Michel Foucault (1980) describes the mandate of the modern state, and the “emergence of the health and physical well-being of the population in general as one of the essential objectives of political power” (169–70). Foucault goes on to say, “Different power apparatuses are called upon to take charge of ‘bod-

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ies,’ not simply so as to exact blood service from them or levy dues, but to help and if necessary constrain them to ensure their own good health. The imperative of health: at once the duty of each and the objective of all” (170). 5. Simon Gikandi documents the philosophical articulations of reason and aesthetics emergent in the eighteenth century in Slavery and the Culture of Taste (2011, 1–29). 6. Critical race theory of the 1980s and 1990s offers some of the best examples of how expertise in the case of law reproduced racial inequalities. 7. This is an amazing finding given the noted oratory skills of adults and children in many black communities, from preachers to musicians. One should also note the reproduction of maternal blame for social problems. One of the best places to find the latest theories is in science journalism, or op-eds, where these ideas of persistent inequalities are boiled down to, for example, a theory that poor women need to cuddle their children more. See, for example, Nicholas D. Kristof, “Cuddle Your Kid!” New York Times, October 20, 2012, www.nytimes.com/2012/10/21 /opinion/sunday/kristof-cuddle-your-kid.html?ref = nicholasdkristof&_r = 0. 8. In 2012, the Substance Abuse and Mental Health Services Administration (SAMSHA) of the U.S. Department of Health and Human Services reported that the majority of people who “abused” prescription medications received medications from friends and family who purchased them legally (SAMSHA 2012, 29). 9. Sickle-cell patient concerns about “evidence-based” treatments were a common theme in my interviews with more than fifty sickle-cell patients over many years. One said that her headaches went away after she stopped taking the medications prescribed by her neurologist. Another said her husband died because of the effects of long-term use of narcotics for pain. Even Jerry had rejected a hip transplant for over ten years. He chose the pain over the treatment because, he said, everyone he knows who had a hip replacement died within five years. 10. Adverse Event Report, FDA, for Johnson & Johnson ASR Acetabular Cupacetabular Cup Size 46, http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfMAUDE/detail.cfm?mdrfoi__ id=2302293.

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Bourgois, Philippe, and Jeffrey Schonberg. 2009. Righteous Dopefiend. Berkeley: University of California Press. Campbell, Nancy D., and Susan J. Shaw. 2008. Incitements to Discourse: Illicit Drugs, Harm Reduction, and the Production of Ethnographic Subjects. Cultural Anthropology 23 (4): 688–717. Chen, Jersey, Saif S. Rathore, Martha J. Radford, Yun Wang, and Harlan M. Krumholz. 2001. Racial Differences in the Use of Cardiac Catheterization after Acute Myocardial Infarction. New England Journal of Medicine 344:1443–49. Choy, Timothy. 2005. Articulated Knowledges: Environmental Forms after Universality’s Demise. American Anthropologist 107 (1): 5–18. Crenshaw, Kimberle. 1988. Race, Reform, and Retrenchment: Transformation and Legitimation in Antidiscrimination Law. Harvard Law Review 101 (7): 1331–87. Dumit, Joseph. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham, NC: Duke University Press. Foucault, Michel. 1994. The Birth of the Clinic: An Archaeology of Medical Perception. New York: Vintage Press. ———. 1995. Discipline and Punish: The Birth of the Prison. New York: Vintage Books. ———. 1980. The Politics of Health in the Eighteenth Century. In Foucault, Power/Knowledge: Selected Interviews & Other Writings, 1972–1977, edited by Colin Gordon, 166–83. New York: Pantheon Books. Frederick, Marla. 2003. Between Sundays: Black Women and Everyday Struggles of Faith. Berkeley: University of California Press. Gikandi, Simon. 2011. Slavery and the Culture of Taste. Princeton, NJ: Princeton University Press. Greenhouse, Carol J. 2011. The Paradox of Relevance: Ethnography and Citizenship in the United States. Philadelphia: University of Pennsylvania Press. Gregory, Steven. 1999. Black Corona: Race and the Politics of Place in an Urban Community. Princeton, NJ: Princeton University Press. Gwaltney, John Langston. 1993. Drylongso: A Self-Portrait of Black America. New York: New Press. Herrnstein, Richard, and Charles Murray. 1994. The Bell Curve: Intelligence and Class Structure in American Life. New York: Free Press. Jacobs-Huey, Lanita. 2006. From the Kitchen to the Parlor: Language and Becoming in African American Women’s Hair Care. New York: Oxford University Press. Jones, Carla. 2010. Better Women: The Cultural Politics of Gendered Expertise in Indonesia. American Anthropologist 112 (2): 270–82. Kleinman, Arthur, Veena Das, and Margaret M. Lock. 1997. Social Suffering. Berkeley: University of California Press. Klick, Jonathan, and Sally Satel. 2006. The Health Disparity Myth. Washington: American Enterprise Institute. Levine, Robert S., James E. Foster, Robert E. Fullilove, Mindy T. Fullilove, Nathaniel C. Briggs, Pamela C. Hull, Baqar A. Husaini, and Charles H. Hennekens. 2001. Black-White Inequalities in Mortality and Life Expectancy, 1933–1999: Implications for Healthy People 2010. Public Health Reports 116:474–83.

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Liebow, Elliott. 1967. Tally’s Corner: A Study of Negro Streetcorner Men. New York: Little, Brown and Company. Manchikanti, Laxmaiah. 2008. Evidence-Based Medicine, Systematic Review and Guidelines in Interventional Pain Management; Part I: Introduction and General Considerations. Pain Physician 11:161–86. Matory, J. Lorand. 2005. Black Atlantic Religion: Tradition Transnationalism, and Matriarchy in the Afro-Brazilian Candomble. Princeton, NJ: Princeton University Press. Maurer, Bill. 2005. Due Diligence and “Reasonable Man,” Offshore. Cultural Anthropology 20 (4): 474–505. Meier, Barry. 2013. “Maker Aware of 40% Failure in Hip Implant.” New York Times, January 22. www.nytimes.com/2013/01/23/business/jj-study-suggested-hip-device-could-fail-inthousands-more.html?hp&_r = 0. Mitchell, Timothy. 2002. Rule of Experts: Egypt, Techno-Politics, Modernity. Berkeley: University of California Press. Miyazaki, Hirokazu. 2003. The Temporalities of the Market. American Anthropologist 105 (2): 255–65. Mullings, Leith, and Alaka Wali. 2001. Stress and Resilience: The Social Context of Reproduction in Central Harlem. New York: Kluwer Academic/Plenum Publishers. Ramos-Zayas, Ana Y. 2003. National Performances: The Politics of Class, Race, and Space in Puerto Rican Chicago. Chicago: University of Chicago Press. Redfield, Peter. 2005. Doctors, Borders, and Life in Crisis. Cultural Anthropology 20 (3): 328–61. Rouse, Carolyn. 2004a. Engaged Surrender: African American Women and Islam. Berkeley: University of California Press. ———. 2004b. Paradigms and Politics: Shaping Health Care Access for Sickle Cell Patients through the Discursive Regimes of Biomedicine. Culture, Medicine and Psychiatry 28 (3): 369–87. ———. 2009. Uncertain Suffering: Racial Health Disparities and Sickle Cell Disease. Berkeley: University of California Press. ———. 2011. Informing Choice or Teaching Submission to Medical Authority: A Case Study of Adolescent Transitioning for Sickle Cell Patients. Ethnicity and Health 116 (4–5): 313–25. SAMSHA. 2012. Results from the 2011 National Survey on Drug Use and Health: Summary of National Findings. Rockville, MD: Substance Abuse and Mental Health Services Administration. www.samhsa.gov/data/NSDUH/2k11Results/NSDUHresults2011.pdf. Schultz, Amy J., and Leith Mullings. 2006. Intersectionality and Health: An Introduction. In Gender, Race, Class, & Health: Intersectional Approaches, edited by Amy J. Schultz and Leith Mullings, 3–20. San Francisco: John Wiley & Sons. Shim, Janet. 2010. Cultural Health Capital: A Theoretical Approach to Understanding Health Care Interactions and the Dynamics of Unequal Treatment. Journal of Health and Social Behavior 51 (1): 1–15. Smith, Daniel W. 2003. Deleuze and the Liberal Tradition: Normativity, Freedom and Judgment. Economy and Society 32 (2): 299–324. Stack, Carol. 1974. All Our Kin. New York: Basic Books.

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Temel, Jennifer S., Joseph A. Greer, Alona Muzikansky, Emily R. Gallagher, Sonal Admane, Vicki A. Jackson, Constance M. Dahlin, et al. 2010. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. New England Journal of Medicine 363:733–42. Zaloom, Caitlin. 2003. Ambiguous Numbers: Trading Technologies and Interpretation in Financial Markets. American Ethnologist 30 (2): 258–72.

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32 “GOD ISN’T FINISHED WITH THIS CITY YET” Disputing Katrina-Related Deaths in Postdisaster New Orleans

Anne M. Lovell Une mort est autre chose qu’un effet nécessaire de causes générales au niveau d’un individu. La “mort de quelqu’un” est la conjonction d’événements singuliers qui imposent à un parcours de vie un terme qu’on ne peut pas confondre avec le terme inéluctable de la “voie finale commune.” GEORGES CANGUILHEM

If death is the great leveler, it does not erase the social inequalities that shape forms of dying, and disaster-induced ones are no exception (Garcia-Acosta 2002; Klinenberg 2002; Oliver-Smith 2002). Hurricane Katrina and the flooding of New Orleans exacerbated preexisting vulnerabilities, culminating in socially patterned ways of dying. Those who died in or near their homes or whose bodies were amassed in public spaces for later collection were probably disproportionately African-Americans, poor, or elderly.1 Many could not or would not evacuate, an agentivity—and not necessarily passivity or dependence (N. Stephens et al. 2009)2—rooted in lack of resources, fears of being moved when dependent on therapeutic or life-support devices, and solidarity of family members remaining with their sick and disabled.3 Suicides, on the other hand, have been presented as a fatality of the better-off and “whites.”4 The fewness of suicides precluded generalizations about their social dimensions. Yet police and local media tended to present the suicide prone as having “more to lose” economically, like the widower perched on top of the Greater New Orleans Bridge, “a lovely gentleman in a beautiful suit with an umbrella, probably early sixties,” as one police officer recounted. “He’d lost his house. He told [us] that, quite honestly, all he had left was the umbrella—and the best thing [we] could do for him was to let him go over the bridge.”5 While structural relations underlying patterns of dying provide crucial clues for understanding the social shaping of disasters, such analyses sidestep the question of the

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diversity of languages deployed in relating forms of dying. As Veena Das (2002) has noted in a different context, language, and sociological theories that assume only certain deaths as understandable, can undermine efforts to discern the circumstances under which some lives are valued but others not. I am interested here in such politics as they surface when disaster survivors appropriate the deaths of others, reconstructing narratives of agency at the same time that they reestablish connectedness. I examine this process through the collective struggles to define Katrina-related deaths6 that surfaced in the public “statistical wars” waged over suicides and death rates; in everyday postdisaster conversations that I term Katrina talk; but also in a zeitgeist that I, too, experienced, as an anthropologist and a part-time resident of New Orleans. I explore a local science of death statistics that responds to the devastation wrought on health, relationality, and citizenship. Along with the language of contagion, or “dying from Katrina,” homegrown devices like the obituary extend the disastrous event in time and space, producing a paradoxical response to the city’s fragmentation. My observations are based on eighteen months of fieldwork, interviews, and document analysis over four years, beginning five months after Katrina made landfall, on August 28, 2005. I also use online commentary to news articles, Internet bulletins, and the blogosphere, which constituted a unique post-Katrina public space where aid and civic action mobilized, especially among dispersed communities (Bordreuil 2011). From these interconnected sources emerge valuations of death hewn from a double ambiguity—produced by aggregate statistics and encountered in expressions of the loss of some ones, of individuals—but filtered through the pervasive culture of New Orleans as a “city of the dead.”

WA G I N G T H E S TAT I S T I C A L WA R S : K AT R I N A S U I C I D E S A N D E XC E S S M O RTA L I T Y

Within weeks of Katrina, media and mental-health professionals noted a “sharp increase” in suicides: a pediatrician hanged himself in his partly destroyed home; a Bourbon Street bar customer shot himself against the background of dance music; a first responder cracked up. Even young children talked about not wanting to live (Nossiter 2005). Health officials evoked the “walking wounded” poised to kill themselves. The local police department’s crisis-intervention team, the main de facto mental-health service in operation post-Katrina, reported high levels of emergency calls for suicidal behavior, including what is euphemistically known as attempted “suicide by cop” (aiming weapons at police in hopes of being shot and killed). Katrina’s “aftermath that kills”—the broken infrastructure, destroyed homes, dispersed communities, inoperative institutions, lost jobs, emptied pockets and bank accounts, let alone deaths and illnesses—shrouded the city in a collective, endemic sense of hopelessness and despair. Yet a few months later, world-renowned psychiatric epidemiologists would challenge this worldview by presenting the first results of a survey of Katrina survivors

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(McConnaughey 2006). This Harvard University study produced a counterintuitive finding: suicidality—thinking about, planning, or attempting suicide—turned out to be less common among Katrina survivors interviewed than among a sample of residents from hurricane-affected areas, including the New Orleans Metropolitan Area (NMA) and other urban and rural areas, interviewed before Katrina (Kessler et al. 2006). Even when only clearly distressed survivors were considered, their likelihood of suicidal ideation was below that of similarly distressed respondents in the pre-Katrina sample. The Harvard study’s design was not problem free, as its authors admitted.7 Ronald Kessler, its lead epidemiologist, publicly cautioned that suicidality might still increase, because effects of trauma develop over time (McConnaughey 2006). But he also suggested a psychological mechanism at play: “post-traumatic personal growth,” defined as inner strength and faith in the ability to rebuild one’s life, buffered against suicidality. Epidemiological surveys of this sort aim to capture the psycho-logics of distress, reflecting the turn toward an individualizing yet ecumenical language that narrowly translates the effects of collectively experienced violence and socially shaped trauma. But my concern is with the local skepticism with which low-suicidality claims were met. Months earlier, Louisiana’s state epidemiologist had released numbers showing more suicides for the preceding few months than for similar periods before Katrina—sixteen versus eleven. But he also summoned cautionary statistical logic by noting that with such small numbers, the difference could be “due to chance”—a statement that drew compliments from Kessler. (“That’s a clever epidemiologist!” he told a New York Times reporter [Saulny 2006].) Both public figures and ordinary people I interviewed were quick to counter the small numbers with their own anecdotes of coworkers or friends who had committed suicide since Katrina. The Orleans Parish deputy coroner announced that suicide rates had actually tripled in the four months post-Katrina (Walsh 2006). Others remarked that suicide counts left out evacuees outside Louisiana. Even the state’s medical director for mental health called the official suicide rates “suspicious,” noting that deaths certified as suicides constitute an exclusionary clause for life insurance and that numerous self-inflicted deaths are misclassified as accidents (Saulny 2006). Controversy over suicidality, conflated with actual deaths by suicide, penetrated the local blogosphere.8 Bloggers debated the merits of a public act—the “coming out of the Zoloft closet” (Oyster 2006) of a Pulitzer-Prize nominated journalist at the Times-Picayune, the New Orleans daily, after he journeyed “to the edge of the post-Katrina abyss, and back again” (Rose 2006). His essay, published in the Times-Picayune and widely republished, described the generalized severe depression and suicidality he witnessed after the hurricane: “Three friends of mine have, in fact, killed themselves in the past year and I have wondered what that was like. I rejected it. But, for the first time, I understood why they did it. . . . Hopeless, helpless and unable to function. A mind shutting down and taking the body with it.” The constant flow of “accounts of death, destruction and despondency,” he wrote, had eventually brought about his own suicidality, breakdown, and psycho-pharmacological treatment (Rose 2006). Bloggers argued the merits of

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medication and psychiatric versus existential understandings of despair (Oyster 2006); but no one denied the despondent feel to the city—a veritable zeitgeist. By 2008, Centers for Disease Control and Prevention (CDC) researchers and the state epidemiologist published a final assessment of excess deaths, based on official cause of death for eight hundred individuals (out of some 971 bodies recovered in Louisiana after Hurricane Katrina, not counting an unknown number of missing people). The information was compiled from the federal Disaster Mortuary Operational Response Team (DMORT) that collaborated with parish coroners and examined the Louisiana Vital Records office’s death certificates. The CDC/state study concluded there were four suicides for the entire state following Katrina (Brunkard et al. 2008), far less than lay anecdotes and public officials claimed. By then, the Harvard study’s follow-up had found an increase in suicidality among Katrina survivors, thus supporting Kessler’s prediction that the worst reactions to trauma were yet to come (Kessler et al. 2008). But the CDC/state study had examined suicides only in the two months following Katrina, in keeping with the narrow but standard definition of the International Classification of Disease-10 (ICD-10) of the World Health Organization (WHO). The cause of the category “Victim of cataclysmic storm and flood (ICD10) Code X37” is limited to drowning, trauma, or injury within two months of the disaster. Code X37 clearly does not correspond to the definitions that not only bloggers but even some Louisiana officials and researchers employed in qualifying a death as Katrina related. For example, the website of the Orleans Parish Coroner, who coordinated most of the recovery and identification of bodies, publicly expanded the definition in a video on his office’s website: “The number-one killer of Katrina was not drowning,” he tells the camera. “It was not accidental falls. It was the exacerbation, in other words, [the] making it worse, of a heart condition, a liver condition, or a lung cancer or a brain cancer or of any kind of disease that was going on” (Minyard, n.d.). Similarly, the Louisiana Department of Health and Hospitals, in an unpublished report, included deaths from disease (DHH 2007). Columbia University’s Earth Institute, which attempted to resolve the problem of uncounted Katrina-related deaths by asking survivors to submit death notices, raised similar points: “There are two principal reasons why the death toll remains unclear. One is that a large number of people remain missing. The second is that the number of deceased depends on exactly who is counted as being a victim of the hurricane. We must count all who drowned or were crushed in building collapses, but do we count those who had a prior medical condition such as heart disease or respiratory problems that were fatally aggravated by the trauma of the hurricane? Do we count those who committed suicide in the days after?” (Mutter, 2013). In the Katrina statistics wars, then, the instability of death statistics brushed up against the personal experience of individuals and communities, drawing anger and indignation. One could focus on the power relations encompassed though the “strong language” of statistics as discursive practices capable of transforming the modes of existence of

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subaltern groups (Asad 1994) or of strengthening hegemony more generally. Statistics can also be viewed as a capital of sorts, crucial for legitimizing social problems as worthy of public attention (Gusfield 1980), though this involves the symbolic power of numbers as much as the truth claims attached to them (Lovell 1992). The Katrina deaths, however, suggest that ways of counting and representing function in distinct ways according to what is at stake in the specific circumstances in which these acts are generated. In this vein, I now turn to local languages of death.

D I S P U T I N G K AT R I N A - R E L AT E D D E AT H S : T H E P U L S E O F T H E C I T I Z E N RY

The death of some one, as Canguilhem termed it (1989, xiii), constitutes a building block in the construction of the very mortality statistics through which that individual’s erasure is realized. However, the very complexity involved in constructing excess mortality statistics in disaster situations paradoxically motivated a return to “single” deaths. Such complexity merits a brief detour. Disaster excess deaths are usually expressed as the difference between the total number of deaths following disaster compared with the number of deaths in the same population before disaster. Excess mortality compares rates before and after the event. Local conditions compromise the quality and completeness of such statistics, just as bodies missing, unclassifiable, or lost in the Katrina diaspora resisted counting, and Katrina disrupted routine vital-statistics functions, destroying offices and records and dispersing personnel.9 (One result was that for the four months following Katrina, the population of New Orleans could not be estimated; hence death rates were impossible to calculate.) Yet as conceptual practices common to demography, clinical trials, humanitarian interventions, and other domains, death statistics may serve policy, moral, and ethical considerations in crucial ways. The social and political uses of statistics concerning “missing girls” at birth, and the excess female mortality rate after birth, provide probing examples, despite their limitations.10 One response to the limitations of Katrina death statistics was the recourse to a locally grown science of death rates based on the daily obituaries. At once public announcement and personalized device, New Orleans obituaries speak through local idiom and endearing nicknames, anecdotes, religious evocations, and photographs, accompanied by long lists of family and friends left behind or joined in the afterlife. Unlike anonymous mortality statistics, the “hot anecdote” incorporated into the obituary presents an individual’s death, a potential single—and singular—number. In the absence of reliable official statistics, some local professionals turned to the obituaries less for their intimate function than as a public source of information. One resourceful social worker, unable to locate her elderly clients after she returned to New Orleans, discovered, by checking the daily obituaries, that one-fourth of them had died. During the early postdisaster period, obituaries also functioned alongside online bulletins, blogs, and listservs—and information taped to

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street signs, makeshift memorials, and empty homes—as threads of communication patching the torn fabric of the city. It is in this context that the New Orleans City Department of Health undertook an unconventional study of excess mortality by sampling daily death notices in the principal daily newspaper, the Times-Picayune. They counted excess deaths beginning the fifth month after Katrina, January 2006, through June 2006. To calculate rates, they extrapolated numbers from obituaries and used a New Orleans population estimate for January 2006. This generated a startling 47% in deaths beyond the average deaths per month before Katrina (in 2002 and 2003). Once standardized, the data translated into a postKatrina mortality rate of 91.37 per 100,000 for January to June 2006, compared with the pre-Katrina mortality rate of 62.17 deaths per 100,000 population (K. Stephens et al. 2007). In the flurry of media attention, these rates, released before the final CDC/state statistics, provided political leverage. New Orleans Mayor Ray Nagin cited the 47% increase in his State of the City address, insisting that “people are dying” because “the local health system remains in tatters” (Moran 2007). (After Katrina, the public hospital closed permanently, and many health facilities took years to reopen [Lovell 2011]). Dr. Kevin Stephens, the city’s health director and lead author of the obituary study, presented it in testimony to Congress, bolstering his request for additional disaster funds (K. Stephens 2007). Reflecting long-standing political tensions between state government and the City of New Orleans, the State Director of Health and Hospitals (DHH) entered the fray. Calling the numbers misleading and inflated, he told CNN: “[W]e feel comfortable that the death rate itself is roughly where it was pre-Katrina” (Gupta 2007). Some state public health officials scoffed privately at the obituary’s naive methodology, although the city health director defended the obituaries as better data sources than the deficient post-Katrina death-registration system. The analysis later published by the state addressed “concerns . . . expressed about excess post-Katrina mortality,” referring explicitly to the obituary study (Eavey and Ratard 2008), though their conclusion of no excess mortality came with slippage. Rates could not be estimated for the four months following Katrina. And while the state found no significant increase from January to June 2006 in the New Orleans metropolitan area, they did show significant excess mortality for Orleans Parish. But as death rates descended “back to normal” by the end of 2006, the authors refuted post-Katrina excess mortality.11 Beyond politics, the obituary study grew from a hybrid methodology, able to respond, like the “hot” anecdote, to the personal consequences of disaster in a way that “cold” statistics alone cannot. When the lead author told me, “[W]e have names, histories, pictures—it’s more accurate,” he inadvertently alluded to the culturally thick, emotionally charged, personalized device of the obituary.12 But his study contrasted with the CDC and state reports in still another way. Published in the American Medical Association’s disaster journal, the obituary study explicitly addresses nothing less than a crisis of citizenship after Katrina: “The significant increase in proportion of deaths in the first 6 months of 2006 supports the civilian population’s suspicions about the enduring heath consequences of the hurricane” (K. Stephens et al. 2007).

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Even the journal’s editor stated the salience of a locally grown science. In his foreword to the article, he wrote, “[The authors], alerted by the concerns of the citizenry, again took the pulse of the community and found that the rate of death notices, as just 1 ‘imperfect’ measure of excess mortality, was suspiciously elevated.” Short-circuiting methodological critiques, he added, “Is this an ideal population-based study? No, but both the question and the strength of this preliminary report are something that disaster medicine specialists have been struggling with for decades” (K. Stephens et al. 2007). At the same time, the editor underscored a major concern within disaster studies that has emerged hand in hand with the “new science of war,” crystallized in the debate over excess deaths following the 2003 invasion of Iraq. Two controversial papers in the Lancet employed a broad definition of mortality, resulting in far higher death rates than official reports, to the disapproval of U.S. and U.K. coalition forces. The authors included deaths indirectly associated with violence, such as from contaminated water supplies and degraded health infrastructures (Burnham et al. 2006; Roberts et al. 2004). The obituary study also expanded the time frame for Katrina-related deaths (to five to ten months post-Katrina), to the praise of some disaster specialists, who argue for including “delayed deaths” still further displaced from the original events (Uscher-Pines 2007), such as long-term exposure to toxic spills and other disasters-within-the-disaster.

AFFECT AND EFFECTS: THE DISASTER IN TIME AND SPACE

As we saw, official death statistics developed for bureaucratic (vital-statistics and administrative) purposes were harnessed in reaction to citizen concerns, once the controversy over numbers exploded. Language anchored the controversy by defining which type of mortal effects counted, and by placing temporal markers and localizing them. In contrast, many New Orleanians redefined such deaths by essentially extending the time frame of the disaster as event and resituating its effects. In the place of administrative functions, this local language of excess death became, as we shall see, a device of conservatism (Sahlins 2013), assuring structures of relationality in the face of fragmentation and dispersion. Besides the daily obituaries, the “pulse” of the New Orleans citizenry made itself felt at sites like an Internet bulletin published by a local African-American entrepreneur, entertainment mogul, and political consultant, Vincent Sylvain. His New Orleans Agenda, which covered politics, entertainment, African-American leadership, and Katrina-recovery issues, replaced its “Katrina Missing” section in late 2005 with a memorial column entitled “Katrina Related Deaths—Let’s Not Forget.” The dates on the Sylvain postings also inadvertently revealed the time it took to recover loved ones for burial, as in one mother’s entry: “My only child Anthony Atiim Jones, Sr. (born, reared, lived his entire 32 years in New Orleans) died in the flood water of Katrina on August 30, 2005. He was buried in Baton Rouge La. on November 7, 2005. He is survived by his wife and a two-year old son Anthony Jr.” Parallel to scientific critiques of what constitutes a “legitimate” disaster-related death, Sylvain’s “Katrina Related Deaths” column in essence stretched the time frame and

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expanded the sites and legitimate causes of such deaths, in contrast to administrative conceptual practices. Long after statisticians had stopped counting excess deaths, families continued, not without pathos, to post announcements of deaths from Katrina: November 4, 2007: “Just a note on the ‘Katrina related deaths’. Last week I lost a dear friend to sarcoidosis. He and his family were displaced Katrina victims and had moved five times this past year, causing his health services to be compromised after each move. I know most African-Americans have a story of someone in New Orleans who may have had a similar experience. . . . Our families and friends are grieving badly from this unnecessary loss. . . . Thank you for remaining vigilant on the Katrina issue.” January 17, 2007: “Earnest Bunn, Sr. age 79. A former owner of Bunn’s Grocery in Mid-City passed away on December 21, 2006 in Memphis, TN. Mr. Bunn deeply missed his home, his business, and his sons he had to leave since being displaced by Hurricane Katrina.” February 15, 2007: “I’d like to list my uncle’s name in the Katrina Related Deaths (Albert Joseph Butler Jr., Age 69). He died Friday, February 9th. He stayed during Katrina and was rescued . . . via raft. Since Katrina he had been in various hospitals . . . suffering from respiratory and heart problems.” March 11, 2007: “Please add our father Eddie Anderson from the 7th Ward, St. Raymond Church, Sunrise June 16, 1936–Sunset April 11, 2006.” May 30, 2007: “Darlene Jenice Mason, age 43, of New Orleans was displaced to Memphis, TN by Hurricane Kattrina.” January 28, 2008: “Hi Vincent, Jeff Trepagnier here. Please add my father’s name to your list of Katrina Victims. He died last night, January 27, 2008.” The contrast between these memorial devices and vital statistics highlights the incongruity created by the public imposition and circulation of statistics—what Theodore Porter calls a “technology of trust”—as a truth constructed and witnessed by few yet imbued with a moral quality of objectivity (Porter 1996). Death statistics—a device enrolled in the search for general, comparable tendencies—mask the “truth” of the individual case. As philosopher of science Anne Fagot-Largeault argues, medicine cannot ignore the individual and history—hence the casuistry of physicians in contrast to the generalizing science behind vital statistics (Fagot-Largeault 1989). Canguilhem’s (1989) assertion that the contingencies of an individual death cannot be subsumed under the effects of general laws works as a vitalist argument and corresponds empirically to the experience of those confronted with the dying of others but facing authoritative counterproclamations about deaths after Katrina. English lacks a language to express this distinction. In France, which produced a science of mortality statistics in the nineteenth century, that difference is manifest in the opposition between two nouns, mort and décès, both of which translate as “death” in English (although “deceased” exists as noun and past participle). Deaths

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happen in the worlds of animals, vegetation, objects, words, and ideas. Décès, on the other hand, is a notarial and vital-statistics term that has slowly crept into everyday language where mort would be more appropriate, thereby neutralizing a human experience through a language of authority.13 The singular death, Canguilhem writes, has been transformed into the plural, “les décès” (Canguilhem 1989). The statistical wars in New Orleans similarly materialize the work of distinction whereby epidemiological statistics suppress the ambiguities and guesswork underlying them and mask the some ones— forms of life preceding aggregation and irreducible to generalization. The political potentiality of the citizenry’s pulse is ultimately deflected as the epidemiological science of disaster unfurls a veil of objectivity over a messy biopolitical reality, closing off a conversation on the agentivity of death, the violence of a supposedly natural disaster, governmental responsibility, and the shrinking of public goods after Katrina.14 Thus far, I have emphasized a collective counternarrative through which deaths excluded by administrative definitions are revived—a cumulative force of some ones’ deaths. I propose not only that the production of obituaries and other local reports of death and dying extend the event in time and place, replacing them within a popular (lay) causal web of government abandonment and indifference, against the backdrop of a city in the process of permanently eliminating its poorer and racialized segments (Lovell et al. 2011). I further propose that, beyond tracing a geography of blame, the production of obituaries and other reports also nourishes local forms of communicability, a productive capacity (Briggs 2005). In other words, publicizing loss, grief, and memory at once seeks out and creates new and renewed links among the dispersed of the disaster’s aftermath. Hence, the city is doubled by an archipelago of virtual and solid islands, Internet arenas, and sites of everyday city life comprising numerous public spaces that permit crossings and proximity of often-separated fellow travelers, strangers and nonstrangers alike— lines along which affect flows. On one level, this communicability resembles the spread of contagion, like the great epidemics that take form in cities. Adi Ophir (2010), citing late-medieval and modern plagues, in fact considers the city the true subject and hero of disaster.15 He argues that modern catastrophes, or the crumbling of normal expectations about life and death within a devastated population, can be articulated only in relation to populations. I suggest, however, that the living fabric of the city cannot be presupposed after disaster. What contaminates after Katrina, through communicability, is nothing less than affect (as the depression, suicidality, and stories of death indicate), a dying from Katrina that simultaneously produces the very channels through which affect itself flows, both between strangers and within morally cohesive but spatially dispersed communities. These stories assume contact, but virtual contacts—readers of newspapers (Lovell et al. 2011) or commentators on the Internet—suffice. Contagion depends on the similarities in and identifications with stories, as much as on the uncanniness of falling sick or dying from Katrina—an affective quality that destabilizes the listener. Someone too young to die “caught a stroke” after Katrina and went “just

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like that.” An old man, otherwise doing well, “caught the Alzheimer” in the overcrowded sports-arena-turned-shelter, during the flooding (Lovell 2014). Just like Katrina brain—the dystonic cognitive symptoms, like memory loss, forgetfulness, lack of concentration, and depression, that clinicians and survivors complained about (Sakuaye 2006)16—the cause of unexpected Katrina deaths defied simple causal classification. A conversation with a psychiatrist the year after Katrina illustrates that intensity. He had been called into a temporary emergency facility to examine a new patient, a mother of two teen-agers, so depressed she could not care for them. “She started taking medication. She was relating well to me,” he told me. He paused. “Then she died.” When I pressed for an explanation, he repeated: “She just died!” And as if to substantiate the possibility of such deaths, he presented another example of a very depressed patient: “One night he just died in his sleep.” Another pause. “The head just tells the body to stop. You [the researcher] know more about this than I do.” Not only does the cumulative effect of individual Katrina deaths heighten ambiguity that administrative statistics erase. The overlapping and cumulative effects of stories and expressions of depression, suicidality, and death not only extend the boundaries around a “Katrina-related death” but also create a dangerous proximity, as happened to the suicidal journalist. The “nightmare” of constantly coming into contact with devastated evacuees communicated something almost as devastating in its effect. “Life and death go on here, storm or no storm,” one New Orleanian blogged about a friend’s death from a “probable” heart attack. “But the impact of a sudden death like this on someone who made it through the storm and the aftermath is emotionally catastrophic” (Jasper 2006). A vaguer malaise, an air of (to quote one local blogger) “mild depression,” pervaded “everything”—the volatile environment to which disaster survivors had to adapt to preserve themselves.

F O R M S O F DY I N G : C O N T I N U I T Y A N D R E L AT I O N A L I T Y

If the affective quality of local expressions of grief and suffering creates proximity, the appropriation of causes as a truth claim about another’s death also reinforces ties among the living. To live, or “go on,” after loss from death, the living must fold the departed into the mutuality of their existence.17 In Katrina’s aftermath, this process was filtered through the work of distinguishing between a “good” and a “bad” death. Katrina survivors abhorred the abandonment of their dead. In the above-mentioned Sylvain online bulletin and other media, they contested the recovery and identification of bodies. The federal DMORT unit left Louisiana before body identification ended, and disorganized handling of Katrina deaths met wide criticism. One group picketed the morgue with placards reading “Free the Souls Held Hostage at the St. Gabriel Morgue.” Families complained that loved ones, taken from them after dying, were subsequently lost (Dewan 2005). Others decried bureaucratic obstruction that violated corpses (“sitting” on them), thus wronging the living: “We have been victimized by the hurricane, and now we are

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being victimized by the political system and medical investigators’ identification people sitting on deceased bodies and doing nothing to release these death certificates.” Abandonment reduces some ones to decomposed, personless bodies, animal-like corpses. Questioning a death enables those left behind to absorb it by acknowledging how that life was lived. For many New Orleanians, a good death is an accompanied form of dying. It is expressed in active tense and metonymic language (people wake their dead, bury them; the departed pass from the visible world to the invisible one). In the traditional jazz funeral, the accompaniers “cut loose” the body as the band shifts from dirge to upbeat, often with humorously titled standards recalling the departed’s quirks and character. Thus, witnessing the body of even a stranger who died alone or animal-like produces shared grief and anguish, at once threatening and reconstituting the relationality—kin based and anonymous—that constitutes the wounded city as a living body. Notgood deaths might be corpses that the living saw floating in the waters, alongside dead dogs and remnants of houses, or the body that died twice, when onlookers failed to stop an army vehicle from running it over (Lovell 2013). “It’s not the way an individual like that was supposed to go,” one man said of his ninety-year-old uncle, who died in a house that flooded to the rooftop within minutes after the levee broke. “To go like that, drowning like a rat, it’s terrible” (Dewan and Roberts 2005). Throughout Katrina’s aftermath, survivors had transformed if not humanized bad deaths, through small, spontaneous gestures: placing a photograph before the flattened house where a grandparent died, covering a body abandoned on a sidewalk, burying a neighbor temporarily, until officials could reach her. A terrible Katrina-related end could also be redeemed through its transformation into a divine death. The day of the flood might simply have been one’s “appointed time” to leave earth and join God (Sontag 2005). And when a security guard told me, “God isn’t finished with this city yet” as we listened to a news report about the rising murder rate after Katrina, she meant divine intervention as a punishment that also extended the time frame of disaster. In noncatastrophic situations, New Orleans street traditions of Indians, second lines, and the funeral rites for members of social and pleasure clubs (mutual-aid societies) (Regis 2001) constitute routine types of accompaniment, though not all African-Americans partake or even approve of them, and “white” New Orleanians increasingly commercialize these traditions, hiring marching bands to play at private memorial services or remembering well-known “white” public figures in funeral parades winding through the city. Citywide funeral marches became important elements of Katrina commemorative events and protests alike (Lovell 2011). But the positive valence of death, maintaining the presence of those who have died, is built into the body of the city itself. New Orleans incorporates “cities of the dead” (Florence and Florence 1997; Roach 1996) constructed for the living: cemeteries built close to if not within residential areas, their monumental architecture, streets, and alleyways mirroring the social and physical structure of the surrounding environment (Miller and

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Rivera 2006). Tombs—New Orleans’s “homes of the dead” (Roach 1996)—soar aboveground, a solution crafted to avoid the problems of burial in below-sea-level and easily rained-out soils. The striking visibility and proximity of these cemeteries to residential areas ensures a continuity of life and death. This potential is enacted in the performance of second lines, funeral marches, and other memorial rites; in the embodiment of memory of the dead through movement, music, words, and figures that fill the void left by the absence of the actual dead. It is a form of representation linked to what Joseph Roach calls “surrogation,” the primary mechanism for reproducing collective social memory within the “circum-Atlantic world,” the economic and cultural system that emerged in the sixteenth century through the trade of enslaved people and commodities (Roach 1996). The appropriation of Katrina deaths does not replace so much as ensure a presence. Beyond Katrina, the reclamation and quest to identify bodies after war and disaster comprise some of the most atavistic of rituals in those very high-modern societies from which, social commentators would have us believe, death has become invisibilized, alienated from the living. After Katrina, statistical wars, appropriations of a disaster’s definition, protests against souls held hostage, and gestures that personalize corpses ensure the continuity of the dying and dead in the mutuality of existence, a relationality of the living to which the presence of the departed is so crucial.

N OT E S

This chapter draws on research funded through a French Agence National de la Recherche grant, ANR-07-BLAN-0008–02. It benefited from Veena Das’s and Clara Han’s highly insightful comments; any shortcomings are my own. It also reflects valuable discussions with Richard Rechtman, Samuel Bordreuil, Sue Makiesky Barrow, Todd Meyers, and Helen Regis. The epigraph is from Canguilhem 1989, xiii: “Death is something other than the necessary effect of general causes at the level of an individual. ‘Someone’s death’ is a conjunction of singular events that impose a finality on a life course that cannot be confused with the inevitable ‘common final pathway.’ ” 1. According to final Katrina excess mortality statistics, men and the elderly—but not African-Americans—were disproportionately represented among the New Orleans dead. Among the dead who could be identified, 63% were African-American, versus 67.9% of the pre-Katrina number of African-American Orleans Parish residents, according to the 2004 census (Jonkman et al. 2009). (In Louisiana, parishes are the equivalent of counties elsewhere in the United States.) However, these data do not take into account unidentified bodies and missing bodies, which were most likely those of the poorest and the most marginal. 2. Survivors who evacuated prior to Katrina, and middle-class “white” survivors generally, expressed disjoint agency—or assumptions of independence, individual motives, choice, and control. Survivors who stayed and working-class African-Americans tended to focus on conjoint agency—or interdependence with others and faith in God and in the labor of prayer (Stephens et al. 2009).

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3. Online comments about a wrongful-death lawsuit brought on behalf of families whose members died while stranded without proper public health services during Katrina dismiss government abandonment with racist and classist stereotypes: “This is the reason why it is time for lower class citizens to stop relying on the government to take care of them”; “Why were these people still in New Orleans when they were so ill? Who in their families took them out of harm’s way?”; “I left, I came back, I work to support my family out of town. My house in the east [African-American neighborhood] is almost complete. Life must go on . . . if you don’t own a part of the American dream, wake up!” Others laud the lawsuit: “I must respond to the gentleman who is suing the government for his mother’s death. First, I applaud you, as it is time that we as Afro-Americans begin standing up for ourselves again. [. . .] [S]ome people are living barely from day to day with their finances, and if the gentleman would have decided to just walk away from New Orleans to evacuate without any funds, he would have been taking a risk of being picked up and arrested for being BBWW (BEING BLACK WHILE WALKING).” Or “[A]ll you ‘help yourselves’ types [. . .] as you SHOULD know, the hurricane missed us, and our flooding was sustained 100% due to faulty MAN-MADE levees—levees that the feds built & paid for, on the order of the US Congress.” These comments were in response to an article by Gwen Filosa (“Judge Dismisses Wrongful Death Claims from Katrina”) that appeared in the Times-Picayune on May 2, 2007 (blog.nola.com/times-picayune/about.html, downloaded May 3, 2007). 4. As a Coroner’s Office physician told me, “It’s almost as if the persons who ended up committing suicide had more to lose, were further up the socioeconomic chain, had moreadvanced degrees.” 5. Cecile Tebo, interview by the author, New Orleans, December 5, 2008. 6. I use “Katrina” as shorthand for the hurricane, flooding, and “disasters-within-thedisaster” (refinery explosions, toxic spills, fires, and so forth)—that is, for the folding of the manmade (e.g., faulty levees) and the natural. 7. Problems included low response rates, statistical adjustments to equalize the pre-Katrina and post-Katrina samples, the probability that sampling methods missed the most marginal, and the use of screening instead of diagnostic instruments. 8. Suicidality tends to lump suicide with behavior (suicide attempts and plans, and suicidal ideation), though the Harvard study did not. 9. On triangulating data of uneven quality and from disparate methodologies, see World Bank 2012, 139–41. 10. In the World Bank reports, missing girls at birth is the comparison of the sex ratio at birth with the sex ratio in “typically” high-income countries where sex discrimination (i.e., preference for males) is not widely realized through prenatal technologies. Excess female mortality is the comparison of the ratio of male–female mortality in every country and at every age group with that ratio in high-income countries at the same age in 2000. Such measures reveal crucial puzzles, such as excess female mortality in the last decade only in sub-Saharan Africa, despite contrasting conditions within that region (World Bank 2012, chap. 3). At the analytic level, the excess female mortality construct is indicated by single numbers achieved through data reduction and weighting. Although the equations used are considered robust, every move, from computation to choice of reference group, requires many steps of prior reasoned assumptions. Interpreting results entails understanding the meshing of technologies

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(e.g., statistical, curative), principles (e.g., public goods, equity), politics, and policies (e.g., institutional changes) in the lives of women and their communities. 11. The discrepancy between the studies stemmed partly from different population estimates. 12. Dr. Kevin Stephens, interview by the author, New Orleans, October 29, 2008. 13. http://correcteurs.blog.lemonde.fr/2011/04/13/la-mort-agonise/. 14. The literature on the biopolitics of manmade disasters, from Chernobyl to Bhopal, is too vast to cite here. 15. The city form is not necessary to initiating modern epidemics. Think of the recent cholera epidemic in Haiti, beginning in a UN encampment; the start of the 2014 Ebola outbreaks; or AIDS and similar diseases to which the banalization of travel and sex tourism were initially contributors. 16. The term Katrina brain was so commonly used that year that the New York Times listed it among the top neologisms that had “flitted to the fore” in 2006 (Barrett 2006). 17. I am referring to Sahlins (2013, 14), aware that for him the mutuality of existence constitutes the distinct quality of kinship. It is beyond the scope of this paper to examine Sahlins’s strong hypothesis, but in my example, relationality through communicability, whether kinship or kinship-like, structures postdisaster communities.

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McConnaughey, Janet. 2006. “Suicide Rate Higher, but Nowhere Near Double than PreKatrina.” News report transcripts. WAFB Baton Rouge. Miller, DeMond Shondell, and Jason David Rivera. 2006. “Hallowed Ground, Place, and Culture: The Cemetery and the Creation of Place.” Space and Culture 9 (4): 334–50. Minyard, Frank. n.d. “In Their Memory.” Interview with FEMA. http://www.fema.gov/medialibrary-data/befc2c3e-1f0d-45e5-a0dc-0dd44292e862/1621.txt. Moran, Kate. 2007. “Katrina Death Rates Murky: State, City Using Different Numbers.” New Orleans Times-Picayune, June 1. www.nola.com/timespic/stories/index.ssf?/base/news8/118068369488590.xml&coll = 1. Mutter, John C. 2013. Hurricane Katrina Deceased-Victims List. New York: The Earth Institute, Columbia University. Nossiter, Adam. 2005. “Hurricane Takes a Further Toll: Suicides Up in New Orleans.” New York Times, December 27. www.nytimes.com/2005/12/27/national/nationalspecial/27suicides .html. Oliver-Smith, Anthony. 2002. “Theorizing Disasters: Nature, Power and Culture.” In Catastrophe & Culture: the Anthropology of Disaster, edited by S. Hoffman and A. Oliver-Smith, 23–48. Santa Fe, NM: School of American Research Press. Ophir, Adi. 2010. “The Politics of Catastrophization: Emergency and Exception.” In Contemporary States of Emergency, edited by D. Fassin and M. Pandolfi, 59–88. New York: Zone Books. Oyster. 2006. “On ‘To Hell and Back.’ ” October 30. Your Right Hand Thief: Laughing Off Hard Truths in New Orleans (blog). http://righthandthief.blogspot.fr/2006/10/on-to-helland-back.html. Porter, Theodore M. 1996. Trust in Numbers: The Pursuit of Objectivity in Science and Public Life. Princeton, NJ: Princeton University Press. Regis, Helen A. 2001. “Blackness and the Politics of Memory in the New Orleans Second Line.” American Ethnologist 28 (4): 752–77. Roach, Joseph R. 1996. Cities of the Dead: Circum-Atlantic Performance. New York: Columbia University Press. Roberts, Les, Lafta Riyadh, Richard Garfield, Jamal Khudhairi, and Gilbert Burnham. 2004. “Mortality before and after the 2003 Invasion of Iraq: Cluster Sample Survey.” Lancet 364 (9448):1857–64. Rose, Chris. 2006. “Hell and Back.” New Orleans Times-Picayune, October 22. www.nola.com /rose/index.ssf/2006/10/hell_and_back.html. Sahlins, Marshall. 2013. What Kinship Is—and Is Not. Chicago: University of Chicago Press. Saulny, Susan. 2006. “A Legacy of the Storm: Depression and Suicide.” New York Times, June 21. www.nytimes.com/2006/06/21/us/21depress.html?pagewanted = all. Sontag, Deborah. 2005. “At Storm Victim’s Funeral, a Celebration of Life and a City.” New York Times, November 14. www.nytimes.com/2005/11/14/national/nationalspecial/14delery .html?pagewanted = all. Stephens, Kevin U., Sr. 2007. “Testimony of Kevin U. Stephens, Sr., MD, JD.” In Homeland Security and Governmental Affairs, Ad Hoc Subcommittee on Disaster Recovery, United States Senate. Washington: GPO. Stephens, Kevin U., Sr., David Grew, Katren Chin, Paul Kadetz, P. Gregg Greenough, Frederick M. Burkle Jr., Sandra L. Robinson, and Evangeline R. Franklin. 2007. “Excess Mortality

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in the Aftermath of Hurricane Katrina: A Preliminary Report.” Disaster Medicine and Public Health Preparedness 1 (1): 15–20. Stephens, Nicole M., MarYam G. Hamedani, Hazel Rose Marcus, Hilary B. Birgsieker, and Liyam Eloul. 2009. “Why Did They ‘Choose’ to Stay? Perspectives of Hurricane Katrina Observers and Survivors.” Psychological Science 20 (7): 878–86. Uscher-Pines, Lori. 2007. “ ‘But for the Hurricane’: Measuring Natural Disaster Mortality over the Long Term.” Prehospital and Disaster Medicine 22 (2): 149. Walsh, Bill. 2006. “Study: People Standing Tall after Katrina; Survivors Report Drop in Suicidal Thoughts.” New Orleans Times-Picayune, August 31. www.nola.com/katrina/index .ssf/2006/08/study_people_standing_tall_after_katrina.html. World Bank. 2012. World Development Report 2012: Gender Equality and Development. Washington: World Bank Publications.

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33 HUNGER AND THIRST Crises at Varying Thresholds of Life

Bhrigupati Singh In the past few decades the interest in hunger artists has declined considerably. FRANZ KAFKA, A HUNGER ARTIST (1922)

The political drama over the 20 “starvation deaths” in the last two months among the Sahariya tribes of Rajasthan is dying. . . . “It took the death of my sons for people to wake up. I think the good times will last for at least a few months,” says Noori Lal in his spartan hut in Brahmpura village, 350 km south of Jaipur. And slowly, everyone in Brahmpura is coming to believe that a death is good. “It gets us immediate attention, we get food, money. Otherwise, who cares?” INDIAN EXPRESS, TUESDAY, SEPTEMBER 28, 2004

Hunger can take different forms. Voluntary hunger can be a form of self-fashioning, as aesthetic or ascetic striving. Alternatively, in disorders such as anorexia nervosa, the line between voluntary and involuntary hunger, between self-creation and self-destruction, may become blurred, as several authors have shown.1 Fasting may be a private act, but it can also take public, political forms—a theme I previously approached in relation to a gifted hunger artist, Gandhi (Singh 2010; see also Alter 2000). In this chapter I want to take up another, familiar sense of hunger, as a collective crisis of food, manifest in events such as famines and in less eventful forms such as endemic scarcity. In what ways does hunger become an event or a nonevent? What might it mean to retain an interest in uneventful forms of hunger? In the pages ahead I briefly review the anthropological literature on the everyday life of hunger, in famine, drought, and endemic scarcity. Then, drawing on my ethnographic fieldwork in rural central India, I discuss a slow-moving crisis of food and water that subsists and intensifies long after newsworthy narratives of culpability and horror seem to be over. The anthropology of living and dying, as I see it, differs from the news precisely

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in that the calamities it reports are not dramatic but endemic. I will end by asking what this relationship between food and water—one that moves us beyond a straightforward conception of hunger as a lack of food—may teach us about our conceptions of life, and living and dying.

A B R I E F H I S T O RY O F H U N G E R

Kafka’s story of the waning popularity of the hunger artist suggests a provocative question: Can there be a viewing public for hunger, and what happens when this public loses interest, as publics sometimes do? In Hunger: A Modern History (2007), James Vernon argues that the possibility that hunger, of near or distant others, can be an object of sympathy and of institutional intervention is a relatively recent phenomenon, dating roughly to the mid–nineteenth century, with the emergence of a particular modern sensibility. Focusing on imperial Britain, Vernon describes two ways of perceiving hunger that had to recede (or partially recede) for hunger to emerge as an object of sympathy. The first was a theological sense of hunger as divine punishment. The second, a secularized variant of this view, was the Malthusian sense—the dominant view in the early nineteenth century, according to Vernon—of hunger as providing a natural basis for moral order in forcing the indigent to work and preventing overpopulation (17). This “dismal science of political economy” (18), as Vernon calls it, inspired the 1834 New Poor Law, which curbed poor relief and led to the creation of British workhouses. Significant internal political opposition emerged in relation to the New Poor Law. More than this opposition though, what most forcefully enabled the emergence of hunger as a humanitarian subject, according to Vernon, was a new type of British news reporting centered on the workhouses. As Vernon puts it: “Hunger first became news in the 1840s” (14). It was the “personal stories about helpless starving children, the anguish of a mother unable to make ends meet to feed her family, or even, later, the plight of the industrious but unemployed workingman—[that] helped establish the moral innocence of the hungry as victims of forces beyond their control” (18). How did this emerging mode of perception relate to hunger in the colonies? In “Famine in the Landscape: Imagining Hunger in South Asian History, 1860– 1990,” Darren Zook emphasizes the centrality of hunger to the early Indian nationalist imagination. The best-known text in this genre of Indian nationalist writing is Dadabhai Naoroji’s Poverty and Un-British Rule in India (1901). As is well known to students of South Asian history, while Naoroji was one of the founders of the Indian National Congress, at this stage elite nationalist thought was not necessarily anticolonial. Naoroji’s text is an exhortation to the British to follow principles of liberal government, “to care for the people of India, to save them from famine, and to ease them out of poverty” (quoted in Zook 2000, 119). Spurred by a sequence of famines in various Indian states between 1860 and 1877, and by debates in Britain and in India (that also predate Naoroji’s text) on the form that British rule ought to take, colonial authorities sought to codify

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administrative responses to food crises through the Indian Famine Codes. Scholars studying colonial famine codes, such as Sanjay Sharma (2001), Stephen Devereux (2007) and Alex de Waal (1997), have pointed out how these codes were premised on a tension between offering and withholding aid, if the level of suffering was not perceived to be high enough. The Famine Codes set out three levels of food stress—“near scarcity,” “scarcity,” and “famine” (Devereux 2007, 31). Relief was offered only if the level of “famine” was reached, measured by a sharp rise in food prices (at least 40% above the “normal price”), by increased migration, and, most important, by death (31). As the Punjab Famine Code stated: “Imminence of death is the sole criterion for declaration of a famine” (31). The opening excerpt above from the Indian Express tells us that this tension, of a death bringing “good times” in terms of welfare provisions, very much remains alive in contemporary India. Let us understand the stakes of this difference between the eventfulness of famine and the uneventfulness of endemic scarcity more clearly. If we take the case of India, the general consensus is that there has been no large-scale famine in postcolonial India (Dreze and Sen 1990, 16). This is in some ways a “monumental achievement,” as even a critical scholar like Alex de Waal has called it (2007, 7). At the same time, the tension between famine and scarcity is not a minor issue, as de Waal points out, drawing on the work of the economists Jean Dreze and Amartya Sen (de Waal 1997, 12). As Dreze and Sen famously argued in Hunger and Public Action (1989), no major famine has ever occurred in an independent and democratic country with a free press, since particular forms of reportage, public outrage, and oppositional politics often keep state institutions alert about noticeably high levels of mortality. The issue becomes more complex, as Kafka’s story suggests, when the viewing public loses interest. As Dreze and Sen further argue in their discussion of public action: “Starvation deaths and extreme deprivation are newsworthy in a way that the quiet persistence of regular hunger and non-extreme deprivation are not” (1989, 212). The largest recorded famine in world history, Dreze and Sen tell us, is the famine of 1958–61 in China that occurred during the Great Leap Forward, where nearly thirty million people died. This famine, Dreze and Sen argue, was the result of faulty governmental policies that went unreported or underreported for nearly three years. Democracies seem to be relatively successful in preventing such “newsworthy” disasters. And yet, as Dreze and Sen argue, the extra mortality in India from regular deprivation in “normal” times vastly overshadows the death toll of disasters: “Every eight years or so more people die in India because of its higher regular death rate than died in China in the gigantic famine of 1958–61” (Dreze and Sen 1989, 212). In this light we return to Kafka’s picture of the disinterested public, to ask: What might it mean to retain an interest after the spectacle is over? In other words, how might we engage the everyday life of hunger? Anthropology makes a claim on the everyday and the quotidian. So we might ask if there is an anthropology of hunger.

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THE ANTHROPOLOGY OF HUNGER

Anthropologists of hunger, such as Kirsten Hastrup (1993), lament the paucity of writings in this field, which Hastrup suggests has to do with the anthropological emphasis on wellfunctioning social systems and structures rather than on suffering (727). Nancy ScheperHughes (1992) puts the issue more polemically, arguing that anthropology has been complicit in a “denial of the plain fact of hunger as a lived experience” (132). That said, there is a discontinuous trail of anthropological engagements with hunger, some signposts of which we might glean, even from Scheper-Hughes’s own book, among other summaries.2 For several anthropologists of food, Audrey Richards’s 1939 study of the Bantu and Bemba tribes of Southern Rhodesia (now Zimbabwe) is the starting point for the anthropology of hunger. Working with botanists, nutritionists, and biochemists, Richards examined women’s increasing undernutrition, as the men were drawn away from seasonal tasks and from earlier forms of agricultural labor to employment in British-owned mines (Messer 1984, 208). Richards also demonstrated how kinship obligations and culturally prescribed rules of sharing could break down in times of dearth (Messer 1984, 209). For Scheper-Hughes even more than Richards, it is Colin Turnbull’s book The Mountain People (1972) that “broke the taboo of silence against hunger in anthropology” (Scheper-Hughes 1992, 132), with his chilling account of a drought in Uganda and the collapse of all social norms of care and reciprocity among the Ik tribe, former hunters and gatherers forced to resettle as agriculturalists after the establishment of the Kidepo National Park in colonial Uganda. Turnbull describes how Ik individuals fought for their lone survival, against all competitors including their own parents and children (132). According to Scheper-Hughes, Turnbull’s ethnography was discredited by Africanist colleagues as having exaggerated the situation, although for Scheper-Hughes it continues to have strong resonances with her own ethnography and with accounts of other societies in calamity, including Europe during times of extreme deprivation (133). Approaching such contexts of deprivation, we might notice two related trajectories in the anthropology of hunger. The first, as with Richards and Turnbull above, describes the breakdown of social relations—including, at times, at the intrahousehold level—during periods of scarcity.3 This is not a cultural peculiarity found only by Africanist ethnographers. In India, Paul Greenhough (1982) analyzes the Bengal famine of 1943–44, described by many analysts as the last large-scale famine in India. Here, colonial culpability was particularly strong and perceived as such by the nationalist movement, since, partly because of wartime pressures on the British, Famine Code norms were ignored and “the famine was simply not declared” (Dreze and Sen 1990, 16). In this context Greenhough asks how household decisions were made on who would get to eat in a situation of scarcity. Through mortality data and archival work, Greenhough finds that the nutrition of men was perceived as the moral priority, in order to secure the survival of the lineage and society, which led to the conscious deprivation of women, children,

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and the old (Greenhough 1982, 271). Further, Greenhough produces evidence to show that as the situation worsened, many adult males attempted to save themselves by deserting their families. In contrast to social breakdown, a different but related trajectory within the anthropology of hunger analyzes coping strategies in times of scarcity, even in the absence of effective governmental presence. In his review of hunger-related literature, Jeremy Swift, for instance, conceptualizes two types of coping strategies, aside from reduced consumption, that he calls horizontal (reciprocal) redistribution and vertical (patronage/moral economy) forms of security mechanisms (1993, 5). As Swift argues, forms of customary collective coping, particularly “vertical” arrangements, often decline with the intensification of state power and commercial agriculture. In his study of the decline of moral economy arrangements in western Rajasthan, N. S. Jodha (1986) argues that such decline is often spoken of paradoxically, particularly by lower castes and tribes, as a condition of increased insecurity, but also of increased freedom from caste hierarchies. One further animating tension might also be located within the anthropology of hunger, between political economy and subjectivity. In recent anthropology perhaps the most comprehensive overview of political-economy approaches to the anthropology of hunger is offered by Johan Pottier’s Anthropology of Food: The Social Dynamics of Food Security (1999). Pottier focuses on a range of themes including the intrahousehold allocation of scarce resources, gender inequality, risk management, the effects of the Green Revolution, rural class polarization, local agricultural knowledge, loss of genetic diversity, and effective famine intervention (Mintz and Du Bois 2002, 106). However, the initial lament from Hastrup and Scheper-Hughes was not, or not primarily, for more comprehensive details on the political economy of hunger. It was regarding what Hastrup calls the “emotional imagination” or the “lived experience” of hunger (1993, 731). Different, for instance, from Pottier’s approach, Scheper-Hughes’s Death without Weeping: The Violence of Everyday Life in Brazil (1992) remains perhaps the most significant attempt to extend questions of political economy into the realm of subjective, embodied experience. Scheper-Hughes combines the “hard facts” of hunger in the Brazilian northeast with descriptions of forms of delirium and moods specific to hunger, the facial expressions and agonies (“agonia da morte”) of hunger deaths, the long-term emotional effects of living with deprivation, the sexual frenzies that propagate cycles of birth and death, and other affective dimensions of material scarcity. Majestic as this ethnography is, the overriding affect of horror alerts us to a question shared by journalists of the 1840s with those who continue to report on hunger today, a problem that Kakfa’s hunger artist alerted us to: Will the public remain interested if the spectacle is not so spectacular? What does it mean to retain an interest in hunger when it is neither newsworthy nor spectacularly horrifying? I was faced with this question in my own fieldwork. Let me outline the contours of the particular calamity I entered, drawing on which I want to add a thought to the anthropology of hunger, somewhat different from those summarized so far.

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B R I E F LY N E W S W O RT H Y

In a recent book, Ash in the Belly: India’s Unfinished Battle against Hunger (2012), Harsh Mander points out that even as India is touted as an emerging power, said to have overcome large-scale famine, it is also home to 42% of the world’s underweight children (Mander 2012, 19). And further, if starvation were to be defined as a daily intake of less than sixteen hundred kilocalories, described by nutritionists as the minimum requirement to keep the human body functioning, then 17% of Indians grapple with starvation as an element of daily living (21). When starvation appears in the news nowadays, though, the term is often contested. As Mander puts it: “The pattern is monotonously, soullessly uniform: sensational media reports, agitations by local activists, angry denials by government officials suggesting illness or natural ageing to have caused the deaths, and attacks on the government for its failures by a usually slothful political opposition. The dust rapidly settles, as the desperate forgotten survivors of the dead, sometimes without any living adult earning member, struggle to somehow continue to live” (175). One such controversy began in 2002, in the subdistricts of Shahabad and Kishanganj, in the Baran district of Rajasthan. In early 2002 all thirty-two districts of Rajasthan were declared drought affected. In October 2002, after reading sporadic reports in the Hindi news media about starvation deaths, a five-member team from the People’s Union for Civil Liberties (PUCL, Rajasthan) visited Shahabad. The team reported eighteen starvation deaths among the Sahariyas, a “Primitive Tribal Group” (a subcategory within “Scheduled Tribes”) in Shahabad and Kishanganj. The PUCL team sent a letter to the chief minister of Rajasthan demanding intensified government intervention in the area. PUCL also filed a public-interest litigation in the supreme court of India, claiming state negligence as regards famine relief: “The country’s food stocks reached unprecedented levels while hunger intensified in drought-affected areas and elsewhere” (Right to Food 2002b, 1). This litigation was joined by NGOs across six Indian states, describing food security situations comparable to Shahabad and Kishanganj, even in non-droughtaffected areas, beginning the national Right to Food campaign (Khera 2006). A flurry of news reports followed on the Sahariyas in the English-language press, including an article in the New York Times, “India’s Poor Starve as Wheat Rots,” said to be a major embarrassment for the Indian government. A political controversy flared up between rival parties—the Congress (I) in power at the Rajasthan state government level and the Bharatiya Janta Party (BJP), the central government at the time—over the respective misuse of funds. How does a crisis end? In November 2002, a disaster-response manager from the global NGO Doctors without Borders assessed eight villages in Shahabad and Kishanganj, detecting “pockets of malnutrition” (Quinn 2003, 2). Following a reassessment three months later, the end-of-mission report tells us that the crisis is now over: “It can be presumed that the huge influx of relief programs undertaken through Government bodies has effectively reduced the prevalence of malnutrition” (Quinn 2003, 8). Journalists

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continued to trickle in for a while to keep track of deaths in the area and to write about rural poverty. Anthropologists usually enter a space of disaster long after the “drama” is over. I first heard about Shahabad and the Sahariyas just as their share of newsworthy excitement was ending, at a presentation by the Right to Food campaign at the World Social Forum in 2004. I slowly covered the few degrees of separation to a potential host in Shahabad, through members of the PUCL team who had visited the area in 2002, who introduced me to their hosts, now mine: an NGO called Sankalp, almost wholly locally staffed, led by a couple, Moti and Charu, from the nearby city of Kota. Starting in early 2006, I lived in Shahabad, a subdistrict of 236 villages, for the next year and a half.

WRITING AFTER A DISASTER

Endemic scarcity is hard to engage without returning to more ordinary anthropological preoccupations such as the social structure of an area. To briefly describe the demographic composition of Shahabad: the Sahariyas constitute 34% of the population (Government of Rajasthan 2004, 44), along with the Kiraads (a cultivator caste—30%) and the Ahirs (a pastoralist caste—10%), both governmentally classified as Other Backward Castes (OBCs), to whom previous generations of Sahariyas served as bonded laborers—a type of labor relation involving intergenerational servitude and indebtedness. Other groups of high and low status also compose the social fabric of Shahabad, including the Chamars (10%), Bhil Scheduled Tribes (8%), and other Hindu castes in smaller numbers including Baniya (traders), Brahmins, Namdev (tailors), Teli (oil pressers), and others. Colonial and postcolonial governments have attempted to pass legislations banning bonded labor,4 leading neighboring groups such as the Sahariyas and the cultivator Kiraads to periodically renegotiate their transactional relations, usually to more temporary, seasonal arrangements. Alongside agricultural labor, the more long-standing occupation with which the Sahariyas are “traditionally” associated, is the gathering and trading of forest produce—a life option that has waned after the drastic decline of forest cover in Shahabad in recent decades, a decline that most people in the area date to as recently as the 1990s.5 At present most Sahariya families earn their livelihood through agricultural labor. Others cultivate small landholdings assigned to them by the state as part of land-reform movements.6 By the time I began living in Shahabad, the drought was a somewhat more contested memory. Although there was no unified “insider’s” perspective, there was a kind of shared irritation or embarrassment about the term starvation death (bhookmari). Chanda, a Brahmin, next-in-command at my host NGO Sankalp after Moti and Charu, told me early on in my fieldwork: “In today’s day and age no one really dies of starvation.” I had asked him about his village of Mundiar, which appeared in many news reports as a site of such deaths. “That was just a political stew (khichdi), cooked up. Our area got defamed.” Many in Shahabad disputed the term starvation. I asked Moti about this: “The debate is whether it was malnutrition [kuposhan], which it certainly was, or whether it was starvation

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[bhookhmari].7 People don’t like the term starvation because it hurts their self-respect. What can’t be disputed is that everyone faced difficulties at the time.” There was no dispute that there had indeed been a period of heightened scarcity, measurable, for instance, by the staggering numbers of people employed in famine-relief work in 2002.8 What was the history of scarcity in this area? No one in Shahabad, no matter whom and how often I asked, could remember a comparable situation in living memory. The Kota State archives record a severe famine in 1897 that extended to 1899, although the attitude to governmental relief seems to have been quite different then. British colonial records of Shahabad express surprise at the seeming reserve of the Sahariyas during the famine of 1897: “There are some who are actually in distress but feel ashamed to mention it. Sehar caste [at the time, the Sahariyas were one among other “castes”—jatis], suffer much. They have not eaten grain since a month and live on Bel fruit and Jungali (wild) grass. Relief works may be started” (KSA 1897, 7). A colonial official reviewing these relief works expresses his disappointment at low turnouts, which he blames on “the irritating conduct of petty officials in keeping back part of the wages of the poor. In their bitter resentment against the Munshis (accountants), the people lose sight of the paternal kindness and care of the government” (KSA 1900, 7). As a result, people “often leave the relief works and return to their villages to die, as their only way of protesting against oppression” (KSA 1900, 7). From oral accounts, though, I could conjecture what the alternative coping strategies might have been in such times. Even though this region had not known large-scale famines, the Sahariyas were no strangers to scarcity, which until relatively recently was almost an annual, seasonal ritual. I came to know these temporalities of scarcity through a slightly different line of questioning. I had been asking older Sahariya men how they became enmeshed in bonded relations, particularly at a time when (until the 1990s, some said) forest produce was relatively plentiful. My initial conjecture was that, like Turnbull’s Ik tribe above, the hardships were caused by the Sahariyas being made to move away (through governmental coercions and incentives) from shifting to settled cultivation. In Shahabad shifting cultivation continued till the 1970s. Most older Sahariyas, though, did not paint an idealized picture of shifting cultivation, instead describing how labor-intensive it was, and how the grain yields would often be less than the needs of a family, particularly during the monsoon months, which even today remain difficult, if one maps seasonal work cycles and the maximum possible number of agricultural labor days in a year. As Dhojiaji Sahariya, my occasional host in the village of Khushalpura in Shahabad, put it: “In earlier times, during the barsaat [monsoon] months, bhookh padti [hunger would strike].” Dhojiaji was in his midsixties. He had been a haali (bonded laborer) in his youth before receiving a plot of land from the government, which he now cultivated. “In those months, people would enter into difficult arrangements to fend for their families. I have worked day and night for five months a year to earn one hundred rupees. If I missed even a day, I would have to pay four days’ wages, or the equivalent share of grain.” As with Jodha’s villagers in western Rajasthan, Sahariyas in

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Shahabad also spoke with relief about not having to depend on such “vertical” arrangements, much preferring instead to join government famine-relief works. The other option, if we can call it that, during times of scarcity was what colonial authorities call “wild” or “distress” foods. People in Shahabad enjoyed describing “wild” vegetables to me, as if to challenge my ideas of what constitutes food. “There was one called totam ki bhaji [a root vegetable preparation]. If you eat it raw your tongue will bleed. You have to boil it for hours. Or chandi jadi [a fat root vegetable], which has to be left in flowing water for a day. There were many others—phang, chireta [leafy vegetables often found near wells that may be eaten even ordinarily in poorer households]—but you have to know how to prepare them and then be able to eat and digest it.”9 During the drought period in 2002–3, part of the starvation-deaths controversy was the charge by activists and journalists that Sahariyas were consuming distress foods such as sama, a “wild grass.” Further outrage resulted when local government officers described this as a “traditional” part of Sahariya diets. Sama is indeed a long-standing food, but its consumption was and is a sign of food insecurity. The measure of such signs of distress is not necessarily dictated by governmental fiat, but neither is it entirely at odds with what one could find in official documents. Botanically sama would be classified as “small millet” (E. crusgalli) or a “wild cereal,” one among other edible millets (Seetharam et al. 1986, 25). Locally however, the difference between consuming sama and other millets is a difference of kind, a kind of social death, since sama grows as a weed among other crops. As such, it is classified as ghaas (edible grass), as distinct from other, “larger” millets such as jwar (great millet) and bajra (pearl millet), which are cultivated as crops, and thereby count as grain, anna. Taken together, in considering the possibilities of survival during times of scarcity in Shahabad, we arrive at a dismal roster: bonded labor, famine-relief works, and distress foods. No one seemed to add “horizontal” possibilities of mutual assistance to this list. “Koi kisi ka nahin hai saab [No one belongs to anyone at times like these]” was the general refrain. At the same time, the experience of hunger in Shahabad was not described in terms of social breakdown and the abandonment of the vulnerable, as with Richards, Turnbull, and Greenhough’s accounts above—in no small part because of the security measures instituted by the state and because of the presence of a watchful media and political opposition. Also, people’s memories of receiving such governmental assistance were not necessarily cast in terms of a self-evident “entitlement.” Nor was the act of receiving remembered as a form of abjection and dependency. I gradually began to appreciate the fluctuating vitalities that may appear even in zones of precarity. For instance, the drought in Shahabad had generated its own unpredictable gains and losses. A few local leaders had also emerged in this period. The most vivid accounts I received of this period were from one such leader, Kalli Sahariya, a former bonded laborer, who had joined my hosts Sankalp during the drought, and gained an impressive local reputation by the time of my fieldwork. Many Sankalp colleagues told me how Kalli’s chavi (reputation) was established when she organized a

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major dharna (rally) at a police station close to her village during the drought, after a controversial incident in which a drunken man from the numerically and economically dominant OBCs beat up a relative of hers. The OBCs were and continue to be the dominant cultivators in the area and the primary employers of the Sahariyas. As the story goes: The Nagar (OBC) wanted to be included in the “muster roll” (labor payment record) for the drought-relief work so he could be paid although he hadn’t done a day of work. Even they (the OBCs) were in difficulty at that time. He thought he could just bully the Sahariya meth (labor manager) and got violent when he was refused. The police always side with the Nagars. A complaint was filed, but they released him in a few days. Kalli organized a massive rally in front of the police station. People from about 150 to 200 villages participated in a nine-day protest. The Nagar man was finally arrested and charged.

With Kalli I came to sense that the vulnerabilities of those dear to her had spurred her to explore new regions of strength. Her own memory of the drought was of a kind of purposeful intensity that she and others around her had felt at the time. She had never worked for an NGO or any institution before that and knew no form of life other than agricultural labor. She first joined Sankalp as a temporary replacement for a relative. bhrigu: kalli:

In the first drought year, you had just started working for Sankalp? I joined once before, but I left because I was felt udaasi [sadness] at having to leave my family and keep traveling to other villages.

b:

So then why did you rejoin?

k:

During the drought he [her husband, whom I also came to know] and I once fought to the death [lad mareya]. [Laughs]

b:

What was the fight about?

k:

He was ill. I said, “Why aren’t you getting treated? What are you saving the money for?” “Don’t ever talk about money,” he snapped, and slapped me twice. I was so angry I didn’t eat for three days. [Laughs] So then in anger I left to work with Bhenji [Charu, at Sankalp]. This was during the drought.

This was a particularly intense time to join Sankalp. This time around, rather than sadness, Kalli felt something else: k:

Charu Bhenji sent me to many villages to pick up muddas [issues], to make sangathans [women’s groups], to see what [relief ] work had started in different villages. So I went from village to village with others. Some villages had relief work, so we found those villages in which there wasn’t any work. There was no fasal katai [harvest] that year, so there was no demand for labor. There was no water in the tube wells. Not even one field had crops. We went to make presentations all over—

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in Delhi, Jaipur, Hyderabad, lots of places far away. We said, “We are not asking for free food, we are asking for work.” Many people came: Sonia Gandhi, the chief minister. The government had to listen. I came on TV many times! [Laughs] Then I joined the ADM [a district government officer], going from village to village to see the relief work.

This period of intensity brought forth capacities that might otherwise have remained latent in Kalli—her ability to bring people together, to fight and make demands on those who wield institutional power—many of the qualities that her colleagues in Sankalp came to admire, and that continue at present as she heads a human rights center in Baran. Governmental and nongovernmental relief initiatives are often criticized as palliative measures that ignore longer-term issues of scarcity and inequality. In this instance, though, through the time of my fieldwork and after, a host of longer-term measures seemed to be emerging. Inhabiting life in Shahabad after the newsworthy disaster, I found that another common postmortem contention, particularly on the part of neighboring middle and upper castes, was that the akaal (drought) had turned into a sukaal (period of grace) for the Sahariyas. Before 2002 only 25% of Sahariya families had official Below Poverty Line (BPL) status. As a result of the starvation-deaths controversy, all Sahariya families had been declared BPL, which entitled them to thirty-five kilograms of government-subsidized wheat every month, to be bought from the local Public Distribution Service shop, at the rate of two rupees per kilogram. Large budgetary allocations were announced for new development programs. Scores of new NGOs had mushroomed in the area. The precise number of NGOs now serving Shahabad and Kishanganj was disputed, but the most popular figure was 217. Most of them are just “shops for profit,” I was told. That said, not all such measures were an eyewash. Rather than being a straightforward story of neoliberalism, these were also the years when the first glimmerings of welfare-state-like provisions were being tried out in India, with the Employment Guarantee Act, the Right to Food, and other such initiatives. With local NGOs such as Sankalp being closely connected to wider activist circuits, a vigilant local media, and a government apparatus on high alert, Shahabad became a kind of laboratory for many of these welfare experiments. Educational initiatives had long been part of the state development apparatus in Shahabad. And for those who were unlettered, a large-scale JFM (Joint Forest Management) project was under way to “restore” the forests to forest-dwelling tribes. Through famine-relief-like labor such as digging trenches, unappealing as that sounds, the JFM projects also aimed to provide one hundred days of employment to Sahariyas families, as part of the Employment Guarantee Scheme, to make up for periods of scarcity in the annual labor cycle. With all of these initiatives under way, was the crisis now well and truly over? I gradually realized that if one thinks of food and water as interrelated, then a different kind of crisis was just beginning, below the threshold of disaster.

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At various points I tried to ascertain when exactly the drought ended. Some said, halfjokingly, that it was still going on. Others were not joking at all, and would try to explain the extent of the water problem to me and argue that it extended far beyond a one-off drought and famine. “Water is the number-one problem of this area,” I was told. This was the general consensus, among high and low castes and tribes alike. After ignoring such statements for some months as a kind of everyday conversational lament, I began to pay more attention to the specific shift that people in Shahabad were pointing to, which also had to do with notions of food security and consumption, and an expanding definition of hunger, which I now approach in the remainder of this chapter.

A S L O W- M O V I N G C R I S I S B E L O W T H E T H R E S H O L D O F D I S A S T E R

When did the difficulties with water begin? “Jab nadi-talaab toot gaye [When the streams and ponds “broke”—i.e., dried up].” Until recent decades Shahabad would have been described as a relatively lush forest area. The water-related difficulties began in the last twenty years, “once everyone began to use tube wells and pump sets,” I was told. At one level this is a “natural” shift toward mechanized agriculture. What is not natural or necessary, although it may seem so, is a seemingly minor dietary shift that I began to pay attention to in the course of fieldwork, from millets to wheat—which is, I found, a somewhat subterranean cause at the heart of the emerging water shortage, here and in many other parts of the world. I came to Shahabad drawn by a newsworthy form of hunger. Living here, I became interested in a less newsworthy, everyday anxiety around water. These phenomena, it turned out, were not unrelated if we look to an issue that has long interested anthropologists—namely, what constitutes food. What kind of food is indicative of hunger, or of plenty? It was common knowledge, although it came to me late, that in these parts of northern and central India, wheat, seemingly a staple and ubiquitous grain at present, was an expensive, relatively rare and coveted food item until as recently as twenty years ago. Until a generation earlier, everyday diet was strongly differentiated across castes in Shahabad. How would we understand this differentiation? Scholarly writings on Hindu dietary practices have often focused on questions of vegetarianism, transactional purity (Dumont 1980, 130), and ascetic ideals of self-control (Khare 1992, 27). Slightly differently, I began to get interested in contrasts that surfaced even when a dietary norm was shared by low and high castes. These contrasts could not be arranged into hierarchies of “purity,” for instance, with vegetables. Middle castes such as Kiraads and Ahirs ate few or no vegetables. “Their staple was lapta and maheri [types of porridge] with curd or ghee [clarified butter], since they own so many cows,” was how Kailash, my closest friend in the area, described it. Kailash, in his late thirties, belonged to the low-status (SC) Chamar caste, and worked for my host, NGO Sankalp. Vegetables were more regularly consumed by the highest castes such as Brahmins and Baniyas and by the lowest, such as Sahariyas and Chamars. Qualitative differences between “high”- and “low”-caste diets were often

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stark, understood not in terms of purity, but between “coarser” and “finer” tastes. “Brahmins and Baniyas eat naram [fine] vegetables like palak [spinach], kaddu [pumpkin], and lockey [zucchini] with thin flatbreads [patli roti], not the tickker [coarse/thick/bumpkin] bread that everyone else eats,” Kailash added. At the coarsest end of the vegetable spectrum were the jungli bhaji (wild vegetables) mentioned above, some of which are now seen as primarily “distress” foods, indicative of hunger. In earlier generations, then, lower down in the caste hierarchy, diet became “coarser.” Then again, coarse is not a natural category. What we find coarse is a matter of habits and desires, which may also change. Until the late 1980s, the two main grain crops of Shahabad roughly followed an upreti (upland) and talheti (lowland) division of the region. The main crop upland, where the soil is loamy (maar), was jowar (sorghum/great millet). The main crop in the drier lowlands was bajra (pearl millet). The different value of grains did not exactly mirror social hierarchies. Jowar, for instance, was a staple diet for high and low castes in the uplands. There were other hierarchies, though, even within households, as the anthropologists of hunger mentioned above describe, that determined which grain one got to eat. For instance, Rajnish Parihar, in his late thirties, from the high-status Rajput caste, described a childhood memory: “When I was a child, we only ate jowar. My village of Tejgarh is in the uplands. My elder brother had a problem digesting jowar, so my father used to buy a ten-kilogram bag of wheat for him every month. We younger ones would feel bad, like we were poorer. Rich relatives sometimes mock you, saying, ‘Unke tau jaape mei bhi gehu nahin milti [You aren’t served wheat even on the most auspicious occasions].’” For most people wheat was a festival food. Many remembered the delight of newfound access to wheat in recent decades. Lower-caste schoolteachers joked that one of their main attractions to government hostels as children was the fine wheat roti (flatbread) that was daily served there. “It was like every day was a festival! We would ask to stay in school even in the summer holidays, so we could continue to eat there.” Millet was the coarser, everyday reality. Statistical studies of Rajasthan in the 1960s show bajra and jowar ranking highest in terms of regular consumption (Government of Rajasthan 1964, 34). In contrast, recent reports tell us that even as the per capita production of bajra in Rajasthan has drastically declined from eighty kilograms in 1970–71 to thirty kilograms in 2001–2, a major production surplus continues because the demand for the grain has fallen even more sharply, due to “changes in the consumption basket against coarse cereals generally and bajra in particular”10 (“Procurement Shift to Solve Bajra Row” 2003, 1). Policy discussions are under way to reposition bajra as animal feed (“Procurement Shift to Solve Bajra Row” 2003, 1). What we have, then, is the undramatic but drastic demotion of millets and the potential expansion of the category of distress foods. The main technological enabler of this shift in diet and cropping patterns is the transnational Green Revolution, said to have begun in 1964–65 with the emergence of new agricultural technologies—most famously, the Mexican “dwarf wheat” high-yielding varieties of seeds, subsequently exported to many parts of the world, including India (Evenson 2004, 547). Half a century later, there are now well-established positions praising

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and criticizing the Green Revolution.11 The praise usually centers on the role of new agricultural technologies in addressing food shortages. Following the Green Revolution, wheat productivity boomed in India, from yield of 663 kilograms per hectare in 1950–51 to 2,033 kilograms per hectare in 1976, creating buffer stocks of wheat (ICAR 1988, 2). Between 1966 and 1976, the area under wheat cultivation also rose from 12.6 million hectares to 20.1 million hectares (ICAR 1976, 1). One of the first adopters of these new technologies in Shahabad was Mangilal Mehta, a middle-caste cultivator, now in his midsixties, who vividly remembered the transformation: “The first new seed was Sunehra 64 [the Mexican dwarf-wheat seed Sonora 64, translated into Hindi as “Sunehra ‘Golden’ 64”]. I was the first to try it in my village. I bought the seed at a subsidy from our local agricultural-extension officer. The first time I tried it only on one bigha. I bought fifteen kilograms of seeds, twenty kilograms of DAP [phosphorus fertilizers], and twenty kilograms of urea [nitrogen fertilizers]. It yielded fifteen mann, thrice the amount from the previous year! I never went back to the old seeds.” Mangilal was noncommittal when I asked about the criticisms of Green Revolution technologies that one occasionally overheard, in academic and everyday forms. “Some say that urea hardens the ground,” I said. “My field is still fertile,” Mangilal responded. I continued: “Others say that fertilizers cause diseases.” “Who knows? People used to fall sick earlier, too.” What concerned Mangilal more was an immediate threat—namely, the increasing lack of water. Millets are almost entirely rain-fed crops. Even in an irrigated field, millets need four or five times less water than wheat. Agricultural manuals tell us that the most crucial input for the heightened yields from high-yielding-variety seeds is irrigation. Four to six irrigations are needed to obtain the optimum yield from wheat (ICAR 1976, 90). In Shahabad, this is known as the char paani (four waters) needed for wheat production. New technologies enable intensified water extraction. The Green Revolution was accompanied by the proliferation of water-extraction technologies, mostly known by their English names: the diesel-run “pump set” that “pulls” water from surface sources such as ponds and rivers, and bore wells and tube wells (the pataal tod kuan—a “netherworld-breaker” well), which burrow to extract directly from the groundwater— now a staple of many urban Indian households as well. These new technologies are decisive markers of socioeconomic divisions in Shahabad and most of rural India. A family that owns a tube well is considered well-off. Those at the lower-middle end will be saving up for a tube well. Everyone else is considered poor. Rural land prices now hinge almost entirely on the source of irrigation. From zero in the 1960s, privately owned tube wells in rural Rajasthan at the time of my fieldwork had increased to 1.33 million (Birkenholtz 2005, 2). Even though it is an aspiration for many, Shahabad has a relatively meager 712 tube wells and 1,310 registered pump sets (Government of Rajasthan 2003, 66). The reason for the comparatively low number of tube wells in Shahabad is the fact that the “netherworld-breaker” technology is relatively unsuccessful in the talheti lowland villages, since the bedrock below the soil

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is popra (shale), the irregular softness of which makes for poor groundwater-extraction potential. As a result, most cultivators in the lowlands, like Mangilal, use a pump set if their land is close enough to an exploitable surface source of water such as a well, pond, or river. Mangilal shares a well with his two brothers, each of whom has installed a pump set in the well. Their village has a hundred families, all of whom have some form of mechanized access to water. Many in their village began to encounter a water shortage in the early 2000s. If Mangilal and his brothers have their three pump sets on simultaneously, their well will run dry in five minutes. As a result, the brothers arrived at a shared arrangement. One pump remains on for an hour, then off for two hours, and so on. Each brother fulfills his seasonal water requirements in four to five days, although this is a tense transaction, because the timing of the water input is critical for the crop. Because of these changes in water levels, in the last few years Mangilal has reduced his wheat cultivation to only two of his seven bighas, using the remaining land for soybeans, which require slightly less water. Because of the diminished water supply, his wheat yield has now waned to pre–Green Revolution levels. As yet, cultivators in Shahabad describe the water situation as a samasya (problem). Passersby from neighboring, more intensely irrigated parts of central India would bring more worrisome accounts of water-related crises from their areas. Two itinerant fruit sellers arrived one night, looking for shelter in the home of a Sahariya cultivator, where I, too, happened to be spending the night. They were from Shivpuri, the district immediately north of Shahabad in Madhya Pradesh. They shared their worries: “In Shivpuri, there are bores going to five hundred feet, even one thousand feet, but finding no water. People are queuing up for a dish of water. Fights are breaking out daily. People are leaving in large numbers for cities. The government is seizing tube wells and forcing owners to provide fixed periods of service to the public. The owners are fighting back. They say that soon new laws will be passed, and no one will have water except for the government and rich people.” In comparison, “your Shahabad is blessed,” the fruit sellers added. How do we understand crisis with respect to water? Government criteria for crisis evaluation are based on groundwater-balance estimates—the ratio of extraction to recharge, called E/R estimates. Environmentalists argue that E/R estimates are unreliable, since an important factor is water quality, not just volumetric availability (VIKSAT 1993, 10). These uncertainties notwithstanding, E/R percentages may be used to signal levels of danger as regards groundwater extraction—below 70% (secure), 70%–90% (borderline moderate to high), 90%–100% (high), and above 100% (dangerous). In the most recent study of groundwater levels in the region, Shahabad was measured to be at the relatively secure level of 42%. In the more “developed” neighboring subdistricts, E/R danger levels gradually increase: Chippabarod (88.52%), Anta (99.18%), Atru (104.72%), and Baran (113.38%) (Government of Rajasthan 2006, 22). While Shahabad is more secure than its immediate neighbors at present, over the last two decades the groundwater level in Shahabad has

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also dropped significantly from an average of 5.9 meters in 1984 to 8.62 meters in 2005 (Government of Rajasthan 2006, 28). In “Green Revolution and Desertification” (1986) Vandana Shiva and Jayanta Bandyopadhyay describe “aquifer drought” brought on by “exponential growth in water usage” (340). In contrast, Shiva and Bandyopadhyay argue, “indigenous cropping patterns” reduced vulnerability to drought with a low demand for water, mixed cropping, and high organic-matter production (344). In Shahabad I never found cultivators exalting traditional agriculture. Instead, the narratives of older cultivators centered on the much more intense physical labor required in earlier times, as well as the prohibitive taxes from which they were now thankfully exempt. And yet, most cultivators at present live with a sense of threat, and of an ongoing and impending crisis, of increasing “desertification” even in formerly lush areas, in addition to widespread fears regarding the rising costs of seeds and fertilizers, which have resulted in increasingly smaller profit margins. Environmental and socioeconomic critiques occasionally rely on an inadequate picture of people’s desires. For instance, somewhat differently from Shiva and Bandyopadhyay above, we might ask, What attraction did these new technologies exert on a mass scale that led them to be adopted? A simple answer would be the economic benefits. This is not the end of the story, though, as we see with Mangilal or any small-scale cultivator who may have a waxing and then severely waning trajectory with these technologies. Rather than a commonsensical idea of economic self-interest, I will emphasize a different kind of value, somewhere between the necessity of overcoming hunger and the aspiration to eat “well,” to do with the demotion of millets as a coarse “poor man’s” food and the rise and redistribution of “finer” wheat. Tastes and values such as coarse and fine may seem like a minor footnote in the agrarian dramas of the twentieth century. However, I want to suggest that these more ephemeral values, not necessarily imposed on “indigenous” ways of life by policy fiat or economic incentives, are also involved in these processes of desertification. Consider again the empowering aspect of wheat as the food item through which hunger is overcome. Most Sahariyas and other castes in Shahabad ate wheat only a few times a year until even twenty years ago—for instance, bonded laborers who received a fistful of wheat during a festival, or, as we saw with Rajnish above, even the high-caste Rajput family in which the younger brothers would look on jealously at their elder brother’s “richer” plate. Now the poor eat wheat every day. Would they (or “we”) agree to restore millets to our diets? This depends on the value ascribed to millets, values that might be changeable. This is not a difference between Western versus indigenous perspectives. Wheat is in no way foreign or new to India (Evenson 2004, 548). Nor are all “traditional” millets necessarily indigenous. Millet researchers tell us that pearl millet (bajra), “traditionally” consumed in so many parts of India, is a relatively recent entrant into South Asia, introduced roughly six centuries ago by migrants and invaders from West Asia (ICRISAT 1975, 23). Accepting these tectonic movements, we might instead focus on how life (understood here as a sense of vitality and plenitude) waxes and

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wanes. What may have been life giving at a certain point—say, a growth spurt in wheat— may become life denying at a later point, in creating a water scarcity. Millets, as we see, which sustained life for centuries, were demoted. Perhaps at a later stage, soon enough, they may have to ascend again. The critical question is how to sense and participate in these waxing and waning movements at a given juncture. We are at some distance from a simple idea of hunger as a problem to be solved simply by sending food aid to the poor. By whose logic or feeling did millets come to be demoted and classified as “coarse” or “inferior”? Was it government policy, or local tastes, or both? British colonial archives, particularly inquiries into “famine foods,” reveal strong hierarchies and value-laden preferences in the “objective” classification of vegetables and grain, with millets consistently at a lower rank. For instance, one such inquiry conducted in Shahabad in the aftermath of 1899 famine lists many of the “wild” vegetables and “small” millets consumed by Sahariyas as unsuitable “distress foods.” The Agency Surgeon for Kota writes, “There appears to be little doubt that the intractable diarrhea met with among famine-stricken people was to a great extent due to the use of these articles as diet” (KSA 1902). As we saw, this concern continued a century later in Shahabad, during the starvation-deaths controversy in 2002–3, with the argument between activists and state officials around the consumption of sama (a wild “grass”) by Sahariyas. In the section above I argued that sama is indeed a distress food, even in local understandings not entirely dictated by the state. That acknowledged, in light of the decline of a range of other millets, I want to pose a slightly different question: What constitutes food, and how do specific foods define our status as living with lack or plenty? In a well-known article, Amartya Sen discusses the difference between “absolute” and “relative” poverty. Poverty, some argue, is relative to one’s milieu, one’s neighbors. In contrast, Sen emphasizes the “irreducible absolutist core” of poverty: “If there is starvation and hunger, then—no matter what the relative picture looks like—there clearly is poverty” (1983, 159). The problem is that the definition of hunger itself may be up for debate. This is not to say that hunger is wholly relative. There are, for instance, recognizable distress foods within particular dietary cultures. The problem here, as I see it, arises with the gradual expansion of the category of distress foods, through state dictates and social values. Our habits may shift, creating a crisis out of what was formerly ordinary. Millets themselves, as we saw, are not a unified category. There are hierarchies of value among different millets, such as those between “grass” and grain above, that may lead one to be perceived as food less fit for human consumption. These hierarchies are currently in the process of a seismic shift, with an unprecedented and harmful ascent of wheat to the detriment of other grains. For instance, with the proposals above to reposition bajra as animal feed, there may come a time in the not-too-distant future when bajra, too, is transformed from a sign of “relative” into “absolute” poverty, as a distress food indicative of hunger. Is there any scientific basis to describe millets as “inferior”? The postcolonial Indian state inherited many of the scientific values of its colonial predecessor, including ideas

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of nutrition. A postindependence study of Shahabad in 1961 declares that the inhabitants live on a “forest diet,” composed primarily of “inferior millets” (Government of Rajasthan 1964, 23). The recent, slightly belated scientific consensus on millets is that their “nutritional content is no less than the fine grains and superior in certain constituent elements” (Survey of Indian Agriculture 2004, 38). In recent years, Indian agricultural scientists have decided to drop the labels “inferior” and “coarse,” and are encouraging the adoption of the more positive term “nutritious cereals” (Survey of Indian Agriculture 2004, 37). Scientists, however, recognize the critical “social” dimension of the problem: millets are considered a “poor man’s food,” and consequently there is “a shift away from coarse cereals due to changing food preferences” (ICRISAT 1993, 94). In examining this shift in Shahabad, we see that tastes are not entirely dictated by governmental policy. Policies in turn may express social prejudices and values. Even lower in value than jowar and bajra were other millets that have entirely disappeared from the area, kodo and raali (“small” millets common in various parts of Asia and Africa) (Seetharam et al. 1986, 25). Lower-caste men would often tell me their memories of small millets from earlier decades. “We grew it in the dhaanda [dry land]. My father liked it, but I just couldn’t eat it. It was too khiss-khissi [(dry/coarse/hard to swallow],” Kailash said. The word khiss-khissi (“coarse”) expressed a visceral revulsion that was not necessarily ideological. One may gradually learn or unlearn a “traditional” diet. Is it possible to eat without injuring life? The question is what kind of injury may be preventable. When I spoke enthusiastically about readopting millets, I was warned by some in Shahabad, “You’ll fall sick if you eat it every day.” They added informatively, “I can’t shit if I eat bajra for three days in a row.” If millets are to make a return, perhaps they will have to reemerge as a more “cultivated” taste, rearranged in hierarchy and value, and mode of preparation. Some with more radical political tastes may scoff at such minor “lifestyle” changes. On a larger scale, though, a sympathetic reinvitation of millets into global diets may have more beneficial environmental and social consequences than many of the more newsworthy revolutions of the twentieth century. Simply put, if consumed on a large enough scale, say, by the upper and middle classes worldwide, even once every three days, millets have the potential to gradually regenerate the water table, perhaps preventing the water wars of the future.12

C O N C L U S I O N : T H E Q U A L I T Y O F L I F E , AT VA RY I N G THRESHOLDS OF LIFE

The decline of millets is not limited to Shahabad. Even a cursory glance at statistics informs us of the number of states across India where millet consumption is waning. Further, in China, the millet area has been decreasing at the rate of 6.5% annually since 1970 (ICRISAT 1993, 99). Still further afield, we learn that the colonial officers who described these grains as “coarse” were not speaking without a cultural memory of their own. Millets were “the principal foods of the poorer people of ancient Rome and Europe

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generally, replaced in the nineteenth century by rice, maize, and potatoes” (ICRISAT 1975, 9). In present-day Europe and the United States, millets are grown as animal feed. As a result, world statistics for millets are often combined under feed rather than food grains (ICRISAT 1975, 14). The related question of water security is also quite global. In India, 85% of water use is for agriculture (Survey of Indian Agriculture 2004, 135). On a worldwide scale, groundwater overpumping by world farmers at present exceeds recharge rates by at least 160 billion cubic meters per year, such that by 2025, 50% of the world population may face some form of water scarcity (Birkenholtz 2005, 1). In this light it may be worthwhile to welcome some coarseness, and to ask what kinds of values may be altered, including those of food, and the kinds of food that come to be defined as a sign of hunger. Let us return, finally, to Kafka’s hunger artist. As spectators, are we fated to merely gawk at hunger and then to gradually lose interest? What would it mean to sustain an interest? And in what are we expressing an interest? Let us call this a question of the anthropology of living and dying. In a recent paper (Singh 2012), I asked, With what conception of life can we consider the dead as participants among the living? In response I offered the term varying thresholds of life (392) as a conception of life that includes ancestors, spirits, and the not yet born, who might exert conscious or unconscious pressures and intensities on the living. As such, the nonliving, too, may be vital, or at least participate in life. In outlining this definition, I understood life from the monist perspective of Gilles Deleuze as a “vast continuum of human and non-human life” (Deleuze 2001, 12). Thresholds are strata within this continuum, and a way of signaling movements and passages between one form of life and another. I will conclude this chapter by suggesting that perhaps this concept can be usefully reterritorialized from the domain of spirits, where I used it earlier, to a different kind of materiality. For example, let us use this concept to unsettle or resettle an economic term by asking, What is meant by the term life when economists, for instance, use the term quality of life? Rather than “basic capabilities” (Sen 1993, 31) or virtues (Nussbaum 1993, 257), or even “minimally adequate levels for the sustenance of life” (Sen 1993, 41), I want to suggest that the quality of life also involves understanding the relationship between different thresholds of life, since well-being is not one-dimensional. Our calorific intake, for instance, may meet the minimum requirement of internationally standardized, quantifiable definitions of the quality of life. And is the problem of hunger then “solved”? Not quite, since our daily bread, as we saw, may gradually deplete the water table. In this sense crises may also occur at different thresholds, with different speeds and temporalities. Some temporalities are newsworthy, others less so. A step toward heightened awareness may be to remain attentive to the slow-moving interrelation of varying thresholds of life such as we have examined here with food and water and desire and chains of value, and the force they exert on one another. This is a story of hunger and thirst that affects the poor and the hungry, but it is also a matter in which we all continue to participate through our daily bread.

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N OT E S

1. For a wonderful summary of the anthropological literature on anorexia nervosa (including its overlap with forms of aesthetic and ascetic striving), see Karin Eli and Stanley Ulijaszek’s entry on “Anorexia Nervosa” in Oxford Bibliographies Online (http://www.oxfordbiblio graphies.com/view/document/obo-9780199766567/obo-9780199766567–0116.xml). 2. For good Annual Review of Anthropology summaries on food (including issues of food insecurity), see Messer 1984 and Mintz and Du Bois 2002. 3. Another instance in this genre would be Vaughan’s 1983 study of women’s memories of abandonment during a drought in Malawi in 1949, memorialized in songs and figures of speech. Drawing on these memories, Vaughan argues that in understanding hunger, divisions within the family are important as divisions within the community (Vaughan 1985, 202). 4. On questions of feudal “bonded” labor in India and its relation to contemporary forms of wage labor, see Prakash 1990 and Breman 2003 and 2007, among others. 5. In the book emerging from this ethnography, titled Poverty and the Quest for Life: Spiritual and Material Striving in Rural India (University of Chicago Press, 2015), I take up competing narratives of culpability that assign blame differently to state and social actors for the decline of forest cover in Shahabad. 6. A United Nations Development Programme (UNDP)–funded study by the government of Rajasthan in 2004 found 57% of Sahariya households to be landless (Government of Rajasthan 2004, 37). According to the study, at present, 88% of Sahariya households are primarily dependent on wage labor, with only 5.6% wholly self-employed agriculturalists (Government of Rajasthan 2004, 32). Among the laborers, only 1.3% describe themselves as working in nonagricultural labor (Government of Rajasthan 2004, 34). 7. During the drought, the JSA (Jan Swasthya Abhiyan) Hunger Watch group prepared methodological “Guidelines for Investigating Suspected Starvation Deaths” (JSA Hunger Watch 2003). The guidelines are meant to address precisely the dividing line between malnutrition and starvation in terms of body mass index and calorific intake. The postdrought debate among locals in Shahabad seemed unconcerned with these technical norms. It was more a matter of the prestige of the area. Interestingly, in the colonial archive of Shahabad I found a comparable debate in 1899. 8. The number of people employed in famine-relief work in Rajasthan more than doubled from four hundred thousand in 2000–2001 to nearly ten hundred thousand in 2002–3 (Khera 2006, 5165). 9. In her ethno-botanical study Forest Food of Tribals (2006), Ambika Nag describes over two hundred varieties of plants consumed by Scheduled Tribe groups in Rajasthan such as the Bhils, Damors, Garasias, and Minas as well as the Sahariyas. In contrast, I found that most people in Shahabad, including Sahariyas, spoke about the “wild” vegetables in the past tense. Even in the most extended periods of stay in the villages and Sahariya settlements of Shahabad, even those located at the periphery of forest areas, I found almost negligible interest in the gathering of existing forest-based vegetables and plants for regular consumption. This may have been in part because of the drastic depletion of forests in recent years in Shahabad, which has diminished the stock of available resources. It also has something to do with changing food preferences, which is an element of the present chapter.

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10. In postindependence India, the national average of millet consumption was 109 grams per person per day (Kodesia 1975, 16). In contrast, by 2004, millets cumulatively constitute only 8% of cereal consumption, with the remaining portion covered by “fine” cereals such as rice and wheat (Survey of Indian Agriculture 2004, 37). 11. For anthropological accounts of the Green Revolution in India, see Gupta 1998; for Indonesia, see Lansing 1991. For early, celebratory accounts by Indian agricultural scientists, see Kodesia 1975. For a contrasting critical account by an Indian environmentalist, see Shiva 1991. 12. While I make this assertion in a somewhat open-ended Gandhian sense, there have been groups engaged in sustained, data-based advocacy for higher global and national policy priority for millets, such as the All-India Coordinated Small Millets Improvement Project (www.smallmillets.res.in/html/profile.html). However, the problem, as such groups point out, is not only one of policy priority, but also a question of social values and consumer demand. In recent years, even the existing production of bajra (pearl millet), which is still widely grown in the arid regions of western Rajasthan, is far from being consumed, resulting in the policy proposal to reposition bajra as animal feed (“Procurement Shift to Solve Bajra Row” 2003, 1).

REFERENCES

Alter, J. 2000. Gandhi’s Body: Sex, Diet and the Politics of Nationalism. Philadelphia: University of Pennsylvania Press. Birkenholtz, T. 2005. “Tube-Well Institutions in Rajasthan, India.” Paper presented at the Fifth International Conference on Rajasthan, Institute of Rajasthan Studies, Jaipur, December 29–31. de Waal, A. 1989. Famine That Kills: Darfur, Sudan. New York: Oxford University Press. ———. 1997. Famine Crimes: Politics and the Disaster Relief Industry in Africa. Bloomington: Indiana University Press. Devereux, S., ed. 2007. The New Famines: Why Famines Persist in the Era of Globalization. London: Routledge. Dreze, J., and A. Sen. 1989. Hunger and Public Action. Oxford: Clarendon Press. ———. 1990. The Political Economy of Hunger. Vol. 1. Oxford: Oxford University Press. Dumont L. 1980. Homo Hierarchicus: The Caste System and Its Implications. Chicago: University of Chicago Press. Eli, K., and S. Ulijaszek. “Anorexia Nervosa.” Oxford Bibliographies Online. Accessed on March 12, 2014. www.oxfordbibliographies.com/view/document/obo-9780199766567/obo9780199766567–0116.xml. Evenson, R. E. 2004. “Food and Population: D. Gale Johnson and the Green Revolution.” Economic Development and Cultural Change 52:543–69. Government of Rajasthan. 1964. Recent Developments in Rajasthan. Symposium on Problems of Indian Arid Zones. Jodhpur: Ministry of Food and Agriculture and Central Arid Zone Research Institute. ———. 2003. District-Wise Statistical Outline, Baran District. Jaipur: Department of Economics and Statistics.

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———. 2004. Baseline Survey and Study of the Sahariyas of Shahbad and Kishanganj Tehsil. Udaipur: Tribal Research Institute. ———. 2006. Jal Manthan. (Booklet to accompany Water Conservation Campaign, Baran District.) Baran: District Administrative Office. Greenhough, P. 1982. Prosperity and Misery in Modern Bengal: The Famine of 1943–44. Oxford: Oxford University Press. Gupta, A. 1998. Postcolonial Developments: Agriculture in the Making of Modern India. Durham, NC: Duke University Press. Hastrup, K. 1993. “Hunger and the Hardness of Facts.” Man, n.s. 28, no. 4 (December): 727–39. IARI. 1968. Five Years of Research on Dwarf Wheats. Indian Agricultural Research Institute. New Delhi. ICAR (Indian Council for Agricultural Research). 1976. Wheat Research in India, 1966–1976. New Delhi. ———. 1988. Major Crop Production Constraints and Their Remedial Measures in Different AgroClimactic Zones of India. New Delhi: ICAR, Division of Agronomy. ICRISAT (International Crops Research Institute for the Semi-Arid Tropics). 1975. Millets: Importance, Utilization and Outlook. Edited by K. O. Rachie. Hyderabad. ———. 1993. Sorghum and Millets: Commodity and Research Environments. Edited by David E. Blyth. Hyderabad. Jodha, N. S. 1986. “Common Property Resources and Rural Poor in Dry Regions of India.” Economic and Political Weekly 21 (27): 1169–81. JSA Hunger Watch 2003. “Guidelines for Investigating Suspected Starvation Deaths.” Accessed March 1, 2015. www.righttofood.com. Kafka, F. 2011. A Hunger Artist. Translated by Kevin Blahut. Prague: Twisted Spoon Press. Khare, R. S., ed. 1992. The Eternal Food: Gastronomic Ideas and Experiences of Hindus and Buddhists. Albany, NY: SUNY Press. Khera, R. 2006. “Political Economy of State Response to Drought in Rajasthan, 2000–03.” Economic & Political Weekly, December 16, 5163–72. Kodesia, J., ed. 1975. Wheat in India. New Delhi: Indian Agricultural Research Institute. KSA (Kota State Archives). 1897. “Condition of the People in Samvat 1954.” Mahakma Khas Kotah, subject no. 16, compilation no. 3, basta no. 22. ———. 1900. “Final Famine Report by Mr. Bonnar.” Mahakma Khas Kotah, subject no. 16, compilation no. 36, basta no. 22. Lansing, S. 1991. Priests and Programmers: Technologies of Power in the Engineered Landscape of Bali. Princeton, NJ: Princeton University Press. Mander, H. 2012. Ash in the Belly: India’s Unfinished Battle against Hunger. Delhi: Penguin Books. Messer, E. 1984. “Anthropological Perspectives on Diet.” Annual Review of Anthropology 13:205–49. Mintz, S. W., and C. M. Du Bois. 2002. “The Anthropology of Food and Eating.” Annual Review of Anthropology 31:99–119. Naoroji, Dadabhai. (1901) 2000. Poverty and Un-British Rule in India. London: Routledge.

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Nussbaum, Martha. 1993. “Non-Relative Virtues: An Aristotelian Approach.” In The Quality of Life, edited by Martha Nussbaum and Amartya Sen, 242–70. Oxford: Clarendon Press. Pottier J. 1999. Anthropology of Food: The Social Dynamics of Food Security. Malden, MA: Blackwell. “Procurement Shift to Solve Bajra Row.” 2003. Hindu, October 16. Quinn, T. 2003. “End of Mission Nutrition Status Report: Baran—Rajasthan.” Internal document, Doctors without Borders, December 18–February 23. Richards, A. F. 1939. Land, Labour, and Diet in Northern Rhodesia: An Economic Study of the Bemba Tribe. London: Routledge. Scheper-Hughes, N. 1992. Death without Weeping: The Violence of Everyday Life in Brazil. Berkeley: University of California Press. Seetharam, A., K. W. Riley, and G. Harinarayana, eds. 1986. Small Millets in Global Agriculture. New Delhi: Oxford & IBH. Sen, Amartya. 1983. “Poor, Relatively Speaking.” Oxford Economic Papers, n.s., vol. 35, no. 2 (July): 153–69. ———. 1993. “Capability and Well-Being.” In The Quality of Life, edited by Martha Nussbaum and Amartya Sen, 30–54. Oxford: Clarendon Press. Singh, B. 2010. “Asceticism and Eroticism in Gandhi, Thoreau and Nietzsche.” Borderlands, Special Issue on Religion and Sexuality, vol. 9, no. 3 (December): 1–34. ———. 2012. “The Headless Horseman of Central India: Sovereignty at Varying Thresholds of Life.” Cultural Anhropology 27, no. 2 (May): 383–407. ———. 2015. Poverty and the Quest for Life: Spiritural and Material Striving in Rural India. Chicago: University of Chicago Press. Sharma, Sanjay. 2001. Famine, Philanthropy and the Colonial State: North India in the Early Nineteenth Century. New Delhi: Oxford University Press. Shiva, Vandana. 1991. The Violence of the Green Revolution. London and New York: Zed Books. Shiva, Vandana, and Jayanta Bandyopadhyay. 1986. “Green Revolution and Desertification.” Paper presented at the Seminar on Control of Drought, Desertification and Famine, India International Center, New Delhi, 17–18 May. Survey of Indian Agriculture. 2004. Chennai: The Hindu. Swift, Jeremy. 1993. “Understanding and Preventing Famine and Famine Mortality.” IDS Bulletin 24 (4): 1–16. Varshney, A. 1995. Democracy, Development and the Countryside: Urban-Rural Struggles in India. Cambridge: Cambridge University Press. Vaughan, Megan. 1985. “Famine Analysis and Family Relations: 1949 in Nyasaland.” Past & Present 108 (1985): 177–205. Vernon, J. 2007. Hunger: A Modern History. Cambridge, MA: Harvard University Press. VIKSAT/Pacific Institute Collaborative Groundwater Project. 1993. When Good Water Becomes Scarce: Objectives and Criteria for Assessing Overdevelopment in Groundwater Resources. Ahmedabad: Gujarat. Zook, D. 2000. “Famine in the Landscape: Imagining Hunger in South Asian History, 1860–1990.” In Agrarian Environments, edited by A. Agrawal and K. Sivaramakrishnan. Durham, NC: Duke University Press.

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34 “TIBET ON FIRE” Self-Immolation, Affect, and the Global “N of 1”

Vincanne Adams

During the summer of 2012, the policemen walking in the cities of Tibet began to carry fire extinguishers in case they encountered Tibetans who had set themselves on fire.1 The recent and, as of the writing of this chapter, ongoing epidemic of self-immolations in Tibet is cause of “unspeakable sadness” (J. Gyatso 2012). Not without historical precedent, the suicides nevertheless disrupt any easy categorization or explanation, and yet they seem to produce the opposite of unspeakability; if anything they speak too much, say too much, even while leaving unanswered the question of what they accomplish.2 Today, social theory and human rights campaigns are similarly challenged to translate the political suicide in ways that attend to the efficacy of its speech while simultaneously avoiding its escalation. In this chapter, I explore how different strategies of evidence making about these deaths—namely, the use of affect and enumeration—work in relation to both translation and performance of self-immolation suicide in Tibet, in order to not just understand this tragedy but also contemplate what might be done to end it.3

THE SCOPE OF THE PROBLEM

Since 2009, there have been over 130 Tibetans who have set themselves on fire,4 and the number increases as I write. Despite the fact that Tibetan culture has no tradition of either suicide or political martyrdom,5 few observers outside of China dispute that Tibetan selfimmolations are motivated by political causes stemming from sixty years of perceived occupation of Tibet.6 In all cases, the immolators called out their rationale. They offered

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anti-Chinese sentiments alongside praise and hopes for the long life of his holiness the Dalai Lama, asking him to return to Tibet. They raised Tibetan flags and shouted independence slogans before swallowing gasoline and setting themselves ablaze. One of the immolators, a mother in her early thirties named Rinchen, was reported to have shouted: “We need freedom!” before lighting herself on fire. One monk from eastern Tibet explained before he died that he had been banned from making a religious ceremony and that he had openly objected to a rigorous “patriotic education” campaign at his monastery. When I asked my Tibetan colleague Tenzing Norbu about why so many Tibetans were self-immolating, he said, “I ask this question also: From where did they get this idea . . . that if they sacrifice themselves there will be an improvement? Tibetans learned this from outside of Tibet,” he said. “They learned from the Chinese, from living in China. They think that if more and more people do this, it will get more attention.” “Attention from whom?” I asked. “Attention from China, from Western countries, Western people.” “Will this work?” I asked. “Like in Vietnam,” he answered. “When the monk set himself on fire . . . was it effective? I think so. If there is only one, then maybe only a few people will notice. But if there are so many, I think they will pay attention. They will do something. They will change their minds.” Tenzing reminds us that the historic cases of self-immolation (in Vietnam, and in Tunisia more recently) point to a human rights efficacy that is, in part, what inspires the Tibetans. The conditions that make Tibetans feel that suicide as a gesture in response to perceived human rights violation is the best way to voice their political concerns are, I believe, tied to how Tibetans envision making their voices heard by escalating their numbers.7 These concerns take us to the heart of problems of enumeration and affect as generative modalities for the production and circulation of evidence in human rights work. Elsewhere I have been writing about the dynamics of evidence making in and around both an affect economy and a politics of enumeration. (Adams 2013a, 2013b). Briefly, I argue in these works that enumerative logics that prevail in global humanitarian and development programs advance evidence-based auditing and accountability practices that rely on statistical reasoning and (sometimes) experimental platforms (frequently with the randomized controlled trial as the gold standard). I argue that these enumerative logics cannot encompass certain cultural realities and conditions, even though these realities and conditions still matter in a life-and-death sort of way. Some things cannot be apprehended using the tools that produce robust power calculations or even simple statistical facts. Sometimes the numbers can’t be found, and sometimes things cannot be counted. Sometimes counting can do harm. I believe that some truths are better apprehended through strategies that rely on evidence of affect—emotional and ethical sensibilities that structure feeling and condition behavior. Affective evidence includes kinds of media that fall outside the enumerative

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field—the anecdotal, the case study, narrative testimonials, illustrations, and other aesthetic forms (such as photography and video)—which give rise to an emotional sense of urgency to act. Human rights activism has traditionally used strategies of both affect and enumeration. In turning to Tibet, I want to explore how both affect and enumeration enter into problems of what Veena Das has called “ordinary ethics” that in large part define the Tibet–China crisis. I argue for a heuristic that attempts to theorize affect in order to interrogate how logics of enumeration enter into and may even contribute to the problem of escalating self-immolation, or, as Tenzing noted, to the belief that if more Tibetans self-immolate, people will change their minds. I argue that the work of affect, in contrast, may better help constitute a space for ethical refashioning and even political change.

T R A N S L AT I O N S I : S E L F - I M M O L AT I O N A S A N I N D I C ATO R O F H U M A N R I G H T S V I O L AT I O N S

Two fundamental translations must be accomplished in human rights advocacy in the case of Tibetan self-immolation. First, human rights advocacy must carefully script the suicide as an outcome of human rights violations, not as a violation itself. The self-willed death must be transformed from suicide into something more like a homicide—an inevitable violence against the self that boldly says that although it is Tibetans who set themselves on fire, it is the Chinese government that has blood on its hands. Making Tibetan self-immolation effective political speech against human rights violations in Tibet must contend, though, with a long list of Chinese official counterclaims that maintain that when it comes to basic rights for Tibetans, including health care, education, economic opportunity, and security, China’s record is unassailable. In these accounts, Tibet is considered to have more freedom now than it has had in centuries. They are also considered to have had, since the 1950s, as much religious freedom as, if not more than, the citizens in the rest of China. Using this logic, when government forces arrest, incarcerate, or execute Tibetans, when they raid monasteries, and even when they rewrite monastic curricula, they say it is because laws have been broken— because there is a threat to laws that are designed to protect citizens and preserve the social order necessary to provide these more important rights and freedoms.8 Human rights advocates dismiss China’s claims about protecting basic human rights in Tibet because, they note, these achievements are overshadowed by larger oppressions Tibetans face on a daily basis for being religious in ways that get them into political trouble. Their reasoning is that if Tibetans were truly satisfied that at least their basic rights were protected, why would they want to set themselves on fire? The political stalemate over human rights in Tibet is tied to the stalemate between the Chinese government and the exile Tibetan government. This stalemate is hardened in efforts to assign blame for the self-immolations. The exile community assigns blame to the Chinese state, while Chinese officials place the blame on both the immolators (claiming they are hooligans,

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criminals, or psychologically unstable) and on what they have historically called the “Dalai clique,” which they say foments political “splittism” and violence from abroad.9 Kamala Visveswaran, in her own work on immolation violence (2011), illustrates how the circulation of violent images can elongate the temporal impact of the immolation in ways that blur its complexities of purpose. In fact, this is what we have seen in Tibet. As human rights talk is affixed to the problem of suicides in Tibet in specific political ways, these deaths are forced to enact and reenact a well-worn political theater in languages that precede them and that are governed by political agents far beyond them (in Beijing and in the exile community in Dharamsala).10 Self-immolations have become a new weapon in the ongoing political arms race, and like most arms races, this one has escalated, and as we have seen, more and more Tibetans are joining in. The suicide-immolation of any particular Tibetan becomes in some sense a political asterisk in an ongoing battle whose terms are already fixed and, so far, inflexible.11 This has created shared concern, voiced by one of Tibet’s highest-ranking lamas, Ugyen Trinley Dorje, the seventeenth Karmapa, when he early on stated, “Now it’s 50, soon maybe 70 or 80. I am worried that soon we will only be talking about numbers, not about the individual stories” (quoted in “Tibet Situation ‘Tragic’” 2012). Something is lost in the translation of self-immolation from suicide to homicide, and, I would argue, this triggers its escalation. It subverts the potency of the single case of selfimmolation and turns the act into a game of numbers. How, then, can the problem of numbers be replaced by concerns over the problem and potency of meaning of even the single self-immolation?

T R A N S L AT I O N S I I : T H E V I RT U O U S D E AT H

Watching the immolations grow from one to many from outside of Tibet, many Tibetans living in exile have been in mourning. They have canceled religious celebrations. They perform circumambulations around prayer wheels and monasteries in their new exile homelands and pray for the speedy and fortunate rebirth for the Tibetans who have died. They talk endlessly about the escalating numbers and the tragic illogic of it all. Among their greatest concerns is the question, How can the self-immolators be praised for their political sacrifice if they have done something that is essentially unvirtuous? Buddhism forbids suicide—a presumption that is based, foundationally at least, on the idea that as a form of killing, it causes harm not only to the being who dies but to all the other beings who are affected by it.12 Suicide, in other words, is usually not a success but a failure of virtue. This tragedy is doubly felt among Tibetans when they note that the majority of those self-immolating have, in fact, been monks and nuns who are subsequently called “heroes” by many who remain behind.13 Thus, the second essential translation of selfimmolation is that in order for it to “succeed” it must be transformed from an act that is morally bereft into an act that is virtuous in both a political and a Buddhist sense. Thupten, a Tibetan friend who was raised in Tibet but is now living in the United States, explained this to me in the following way:

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Self-immolations are not good because if they [the immolators] die and are full of sadness, negative emotions, and attachment while they are dying, they create a bad situation for their next life. You know, even the Buddha . . . the scripture talks about how the Buddha gave up his body to take care of a tiger who was starving and could not feed her cubs. So this idea of sacrifice for the benefit of other beings is not new. It is there, in Buddhism. But most of these young people, they do not have the skill they need to do this sort of sacrifice correctly. Normally, it takes many years of meditation and training. Normal people, most people, if they are suicidal, they have a lot of sadness, attachment, anger when they die. Young people in Tibet, many . . . most of them, even if they are monks, are they educated? Not really, and if they are not then they have a lot of sadness, anger, and hatred at the moment they die, even hatred for the Chinese. Then that is not positive. From the perspective of Buddhism, from the perspective of religion, it matters.

It is partly for these reasons that many Tibetans met the shocking news of self-immolation of a high-ranking lama named Soeba with a kind of tragic relief. Lama Soeba, the roughly thirty-eighth self-immolator in Tibet, recorded his intentions on videotape before taking his life. He said: This is the twenty-first century, and this is the year in which so many Tibetan heroes have died. I am sacrificing my body both to stand in solidarity with them in flesh and blood, and to seek repentance through this highest tantric honor of offering one’s body. This is not to seek personal fame or glory. I am giving away my body as an offering of light to chase away the darkness, to free all beings from suffering, and to lead them—each of whom has been our mother in the past and yet has been led by ignorance to commit immoral acts—to the Amitabha, the Buddha of infinite light. My offering of light is for all living beings, even as insignificant as lice and nits, to dispel their pain and to guide them to the state of enlightenment. I offer this sacrifice as a token of long-life offering to our root guru His Holiness the Dalai Lama and all other spiritual teachers and lamas. [Lama Soeba recites the Prayer of the Mandala Offering.] . . . All the Tibetan heroes too have sacrificed their lives with similar principles. But in practical terms, their lives may have ended with some sort of anger. Therefore, to guide their souls on the path to enlightenment, I offer prayers that may lead all of them to Buddhahood.14

When I asked Thubten about Lama Soeba’s death, he explained that it was like a “moral correction” for the others: “Lama Soeba . . . did [self-immolation] in a different way. He left a message for his monastic people and his followers and he said, ‘I dedicate my life to the peace of the Tibetan people and Chinese people and the whole world, all sentient beings.’ So it seems to be that if he really did while he is dying, his motivation is peaceful, then that will be helpful. Himself . . . that will be helpful. . . . Lama Soeba . . . self-immolated for the benefit of the other Tibetans who did this in a wrong way.” Thubten’s suggestion that Lama Soeba makes the political immolation-suicide virtuous by reminding us that in order to be virtuous, self-immolation must be about benefitting all

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beings, including the Chinese, and not just Tibetans, is telling.15 His account offers insight into what is at stake for Tibetans in this translation toward virtue. The tragedy provoking self-immolation, Thubten reminds us, is that so many of the immolators don’t know about virtue in this way. Soeba’s actions suggest that immolations are themselves a response to but also a reflection of a kind of breach in the collective ethical order of Tibetan society. The situation of loss is so great that it calls for further acts of self-immolation to rectify the potential spiritual/ethical disaster of other immolators! The translational feats that turn political suicides into virtuous sacrifices for a free Tibet thus return us to questions about what kind of human rights work, then, might help their cause.16 What kinds of evidence of self-immolation might work to change China’s policy in Tibet? Lama Soeba’s message offers the sad truth that despite the intentions of self-immolators to sacrifice themselves for the cause of a free Tibet, their actions will be for nothing if they have lost their sense of what it means to be Tibetan in this way.

T R A N S L AT I O N S I I I : D E AT H I N L I F E U N D E R O C C U PAT I O N

The final translation that might still be explored is how this particular form of political protest—self-willed death—is produced. What makes this choice the obvious one as a political strategy? Here, we might turn to explorations of enumeration and affect in relation to the lived experience of being Tibetan under conditions of political occupation. I have written elsewhere about how Tibetan struggles for political freedom get tangled up in a more complicated set of conflicts over how to become modern via adoption of first socialist and now market-driven reforms issued from Beijing.17 Although much of the focus on Tibetan suffering has been on repression of religion, other government strategies have also resulted in everyday ethical troubles that seep far beyond both the walls of the monasteries and the texts of lineage teachings of Tibet’s great lamas. These everyday forms of ethical struggle may help us to think about what kinds of evidence might or might not work in human rights advocacy there. Veena Das notes that ordinary ethics “trace the vulnerability of everyday life to the facts of our being both embodied creatures and beings who have a life in language.” Ordinary ethics are “made up of judgments we arrive at when we stand away from our ordinary practices to that of thinking of the ethical as a dimension of everyday life in which we are not aspiring to escape the ordinary but rather to descend into it as a way of becoming moral subjects” (Das 2006, 1–2; emphasis added).18 Most Tibetans have cultivated a strong sense of cultural identity in and around being ethical in Buddhist ways. This is not to say that all Tibetans are Buddhist, or that all Buddhist Tibetans are particularly skilled at living up to Buddhist ideals. Rather, ordinary ethics arise in the way Tibetans think of themselves as being in the world, achieved through language, behavior, and thoughts (or, in the Buddhist sense, through mind, speech, and body).19 Here is where the history of perceived political occupation has created problems.

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Under programs of at first gradual and then later rapid modernization, Tibetans have been asked to participate in health, education, and welfare programs that are ostensibly designed to improve their standards of living, their social security, and their well-being. Thus today many Tibetans find themselves hoping to become successful in modern China by availing themselves of these opportunities. Families have embraced teaching their children Mandarin over Tibetan, algebra over Buddhist ethics, socialist political history over cosmology and astrology, and the list goes on. To some extent these regimes of modernization have helped Tibetans to achieve the very goals they set out for themselves as modern Tibetans, but they entail more than a simple substitution of one kind of knowledge for another, one set of political commitments for another. They entail new ways of being and thinking about how to be ethical. One way, then, that expectations for modernity arrive for Tibetans is through a calculus of achievements scripted in the languages of enumeration. Official accounts of Tibet generally begin with evidence that Tibetans are better off because of the things that can be counted and measured. These include fiscal investments, population demographics— quantitative indices of things that are supposed to indicate well-being. The result is found in accounts like the following, which are pronounced by Chinese officials and some Tibet scholars alike: Infrastructure improvements have not only helped grow the economy but also have aided in modernizing remote parts of the Tibetan plateau, an area with 3 million people about twice the size of France. Paved roads allow herders easier access to hospitals and the capital, where they sell handicrafts; . . . cellphone service in parts of western Tibet is better than in parts of New Jersey; . . . Material living standards among the 80 to 90 percent of the population living in rural Tibet are rising rapidly. Health-insurance plans are getting better, bank loans are now more accessible, schooling is free for primary school and middle school, and access to electricity and water is improving. At the improved schools, students learn Mandarin, which gives Tibetans access to work opportunities in government offices in Tibet and in companies throughout China.20

To affirm these claims, the government is very good at providing long lists of statistics that purport to show that Tibetans are better off than they were before “liberation”:

.

Tibetan birth rate and natural growth rate has exceeded that of China since the 1970s (because they are exempted from the one child only policy);

.

Death rate for pregnant women has decreased from 5 percent in 1959 to the current 0.399 percent;

. .

Infant mortality rate is down from 45 percent to 0.31 percent;

.

The average income of the urban population rose 24.5 percent last year to 11,131 yuan (1,590 U.S. dollars);

The life expectancy of Tibetans reaches 67 years, almost double the figure in the 1950s;

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. .

Farmers and herders had a per capita net income of 2,788 yuan, up 14.5 percent;

.

Less than 2 percent of children went to school and the illiteracy rate among young and middle-aged adults was 95 percent before 1951, while the current education policy in Tibet also allows the urban students to receive free nine-year compulsory education, and the illiteracy rate has dropped to 4.8 percent among young and middle-aged adults and the overall rate is below 30 percent.21

In 2007, the region’s gross domestic product (GDP) grew 14 percent to more than 34.2 billion yuan, about 12,100 yuan per capita (higher than the rest of China, and favorable in comparison with the US GDP growth of between 1–3% currently);

In these accounts, one senses that what matters most about them to government officials is that they are factual; they can be presented as statistical truth, affirming by objective measures of enumeration the many ways that Tibetans are better off now than historically. It is important for the government to be able to make this claim not just to Tibetans but to the wider outside world. While some would take issue with these statistics on grounds that they are simply not true (or that, for instance, it is impossible to actually know in a statistically valid way what things like maternal mortality rates are in rural areas),22 I want to focus instead on other ways to think about the problem of enumeration. The use of this kind of evidence is part and parcel of the experience of modernization under what many perceive as Chinese occupation. Knowing how to think about themselves as modern means, for Tibetans, thinking of their everyday lives in terms of these enumerations, whether in relation to their income, their participation in productive work-unit activities, the number of children they have in relation to national and regional statistics, or even in the intimate terms of their menstrual regulation, when they can get married, ask for promotions, educate their children, and so on. The penetration of state efforts to enumerate the practices of everyday decision making are in a very real sense organized around these specific socialist framings of what it means to be good citizens. I have witnessed this in hospitals in Lhasa, as women talked about the pressure they faced to have abortions in order to avoid going over their work-unit birth-rate quotas, and in villages as farmers talked about their crop productivity in relation to regional harvest norms that were expected of them at county tax offices. In this, Tibetans have much in common with everyone else in China. I don’t mean to suggest that Tibetans do not historically, or did not, have ways of enumerating things, or that there is a uniformly ethical way of being Tibetan (i.e., not all Tibetans care about being virtuous in the same ways). However, I would argue that in terms of political debate over how well Tibetans are doing under Chinese rule, the tyrannical use of numbers and enumeration now takes on somewhat different and highly charged meanings. In China’s Tibet, the use of this kind of enumeration is how the government lays claim to being ethical in relation to Tibetans. When assessments and decision making about the quality of life are enumerated in statistical ways that attest to how well Tibetans are doing, Tibetans are left with no real

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way to counter them or to contest the evidence. Even efforts to produce counterstatistics would, I suggest, miss the more important problem: how troubling modernization has become as a set of ethical demands that challenge them in an everyday ordinary way. The numbers used by the state often displace Tibetans’ own sensibilities about how to be ethical—how to be moral persons—in modern China. My point is that it is in part in the numbers that China’s failure to win over the hearts and minds of Tibetans is seen. When Tibetans talk about being ethical, they refer to things that spread far beyond explicit reference to dharma and religious precepts. The way people say hello, the direction in which they walk around prayer stones, the kind of food they eat and how they eat it in relation to who they eat with—all are ethical enactments for them. Ethicality emerges in how they make decisions to have children based on family alliances, romance, and accidents attributed to the force of karma. It is in how they think of their crops in relation to protective deities who remain guardians of the village because they are treated with respect. Most Tibetans know that things are not as rosy as official numbers make them seem, but the evidence they would use to show this is not constituted in numerical ways (or at least it has not been historically). It is in the way they talk about the hardships of life, their fears of poor rebirth because of having killed a fetus, their concerns that protective deities of their village have left for good because of the mining and quarrying they have been forced to do on the mountains where these deities reside. These stories that reveal a kind of ethical violence are ignored by the state because, in part, that kind of evidence exists in a world that has no purchase in numerical terms. They are individual stories, anecdotal accounts, experiences based on perception rather than facts. But, I would argue, it is in these unique and specific accounts that we see how ethicality becomes a force of life and death. A few more examples of everyday ethical violence might be useful: I sat next to my friend Namgyal at a Chinese-hosted banquet to celebrate the signing of his new business deal when his hosts ordered turtle soup. This happened often, he noted, and when Tibetans are offered the soup, the hosts often wait to see who will eat it and who will not. For Tibetans, my other Tibetan friend sitting on the other side of me explained, eating turtle constitutes a kind of irreparable harm in that it prevents rebirth as a human. She whispered this to me before I took my first bite. I sensed mounting anxiety at the table as I realized that to refuse it in front of Chinese hosts would be to openly resist not just the food but a version of government-imposed modernity that rejected as backward and superstitious fears about rebirth in relation to turtles. Namgyal sat for a long time watching the others and perhaps deliberating whether or not to eat the soup as well. In the end, he ate the soup, perhaps thinking a few rebirths might not be as important as the short term gains promised by this business deal. In 1998, during a brief period when restrictions on religious freedoms were being lifted in Lhasa, my friend and colleague Tashi and I joined thousands of Tibetans who were

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making a pilgrimage around the holy sites of the city in honor of the birthday of the Dalai Lama. At these events, it was customary for Tibetans to throw fistfuls of tsampa flour in the air and to bring large amounts of ghee (clarified butter) into monasteries and temples for butter lamps. We threw tsampa together and hauled the butter in and out until we were coated with a layer of its grease. She explained that both of these were offered as ways of gaining merit, bringing about health and happiness for not only this life, but future lives. It was also a way to ensure the survival of Buddhist dharma—of giving offerings to the monasteries and temples we passed. By the final leg of the route, we were covered in ghee and coated with by now quite thick layers of flour, laughing and reveling in what felt like a rare moment in which the normal political tensions of everyday life seemed to be suspended. But as we turned the corner that would bring us back into the paved section of the city, we were halted by a black sedan that blocked our path. A government official jumped out of the car and, with policemen who followed him, began to physically rip bags of butter and tsampa out of the hands of the pilgrims around us, yelling to others about their stupidity and wastefulness. It was surreal. He was red-faced in anger and marched up to an embankment where he gave an impromptu speech, spitting with curses, about how these Tibetans should be ashamed of their behavior. They were throwing away food while so many Tibetans in the countryside were hungry. Festivities for celebrating the birthday of His Holiness were criminalized by the next year. In 2003, Jampa, a young Tibetan entrepreneur, told me about the time he went with his mother to perform tsetar, which is saving the lives of beings who are destined to be killed. Every year they would buy a bucketful of live fish from the market and then drive to the Kyichu River just outside of the city, where they released them. One time, while on their mission, they delivered the fish into the water but as they drove away noticed a Chinese fisherman just downstream who was catching them! Jampa pulled over and pleaded with the fisherman to stop fishing there, explaining to him the merit making of having just released them. But the fisherman refused, arguing that Jampa and his mother had already gained the merit for releasing them and now he was entitled to catch them, as he was poor and had no other source of income. Jampa got so mad at him he grabbed the fisherman’s bucket of fish and threw them all back into the river.

These ordinary encounters reveal an everyday form of ethical contestation that is often missed in the grand claims about how well Tibet is doing under Chinese governance and in counterclaims offered by human rights campaigns in the exile community that focus on lack of religious and political freedom. Of course, the most conflicted of these everyday encounters are those in and around formal religious activities. Tibetans often say that although the majority of the Chinese in Tibet pay lip service to religion, they are not religious in the ways that matter to them. Chinese policies force Tibetans (but more tragically monks) to sell the dharma by turning their most holy religious temples into tourist attractions that required entrance tickets and the peddling of religious objects, all the while reminding the monks of the large fiscal support they are given by the state. They arrest rural pilgrims who have made their way

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to Lhasa for begging during the holy month of Saga Dawa (when wealthy urbanites make offerings to the pilgrims, thus allowing both to gain merit), but then publish statistics stating that farmers’ per capita income increased by 14.5% and therefore they don’t need to beg. Military crews regularly destroy prayer stones and shrines on pilgrim routes throughout the city on grounds that they are disruptive to the flow of traffic. They have on occasion then turned these prayer stones into flagstones for walking paths, forcing Tibetans who are doing circumambulations to walk on and desecrate them with every step they take. In the meantime, official reports focus on the fact that investment in urban infrastructures like these have made Tibet’s cities not only cleaner and more efficient but also economically sustainable. Infringements on traditions and traditional spaces are calibrated by Tibetans as a set of trade-offs between those things that can be counted as measures of Tibetan happiness by the state and their experiences of losing what in some sense defines them as ethically virtuous Tibetans. Under conditions of perceived occupation, Tibetans struggle with many of the same political and cultural tensions that have characterized oppressive political relations in other places at other times.23 At the core of Tibetans’ experiences of oppression under Chinese rule is the problem of how the two cultures have failed to understand one another. Tenzing explained: Tibetans learn very early that they must give up being Tibetan in order to succeed [in China’s Tibet]. Like business transactions, . . . everything they do, they learn that they must give up much to succeed. But not in a good way. It is in a bad way; they must give up being Tibetan. The problem is that it is like a marriage, you know? It is a sixty-year marriage between Tibetans and Chinese, and yet still they don’t know us. Sixty years, but they still don’t know us. They think they do, but they don’t. They don’t really understand us. They say they support religion, but they don’t really. They just use Buddhism for getting rich. They show off Tibetan culture as their “treasure” but they don’t really support Tibetan culture. Then, they get angry when they see Tibetans protest. . . . These Chinese, they don’t really know what is happening in Tibet.

Tenzing’s suspicion that the Chinese people he and his compatriots are forced to embrace in their homeland just don’t really understand Tibetans or their sense of everyday ethicality poses an interesting problem to Tibetans. For, if it were simply a matter of educating the Chinese about what Tibetans really want, I suspect that few Tibetans would resort to such drastic measures to make their point. The problem, I would guess, is not that the “Chinese” do not understand this kind of ethicality but that they do. In fact, I suspect that given the harsh reaction the government has offered toward self-immolating Tibetans— including incarcerating those suspected of or helping others who may be plotting to selfimmolate, and labeling self-immolators as terrorists—it is likely because officials do know what this sort of ethicality is and why it means so much to the Tibetans. In fact, it is precisely because they cannot stop Tibetans from embracing this kind of ethicality in their

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everyday ordinary lives, and because Tibetans value these things more than those the state uses to make claims about how “well off ” Tibetans are, that leads the state to crack down even harder on freedoms of Tibetans in Tibet. That is, it may be, as Das has suggested, “precisely because the state imbues these actions with significance commensurable to the significance they have within the community that ordinariness becomes such a contested site.”24 Ordinary problems make extraordinary things like self-immolation seem justified. It is thus not surprising that the ordinary ethics that frame contemporary problems of occupation in Tibet also contribute to the regimes of carcerality that human rights activists have identified as a target for reform and action. The government has cultivated a heavy-handed set of policies to deal with what it sees as ongoing dissent among Tibetans. But what gets constituted as suspicious behavior by Chinese armed forces and secret policemen tends to blur together politics with all kinds of Tibetan culture. Hence, many Tibetans in Tibet, and not just monks and nuns, live in a fairly high state of political paranoia all the time. They never know when their everyday activities, whether at work, at home, at school, or even at the market, will be seen as suspicious or construed as acts of “splittism” (separatism), and therefore as grounds for arrest. This is true when students decide to learn English rather than Chinese as their second language. It is true when nomad families try to put their children in monasteries instead of secular schools. It is true when Tibetans start to sing patriotic folksongs in nightclubs only to find out that soldiers have reported them for criminal acts of national separatism that, at minimum, result in the closing of these clubs, but might possibly be used to imprison them.25 These everyday frictions, in Anna Tsing’s sense of the term (2005, 4), create monstrous consequences that are experienced in ways that are moral, social, and corporeal. Life in this Tibet makes life as a virtuous Tibetan a constant struggle while, ironically, making a virtuous death possible. One can also talk about this in ways that render death in life concrete and corporeal. Tibetans hold that vital bodily essences, such as the force of wind (rlung) and fire (mkhris pa), course through the body and enable life itself. These essences have corporeal form. Wind is responsible for all movement (including that involved with breathing, digestion, absorption, excretion, etc.) and is itself considered a manifestation of past and present moral possibilities mediated by perception of desire or attraction. Fire, manifest in the essence of bile (mkhris pa), is associated with aversion or anger and in a literal sense is responsible for change.26 Here one begins to grasp a literal sense of life as experienced as a form of death for Tibetans. The assault on one’s morality as a politically overdetermined set of constraints and possibilities under occupation is thus experienced in a very literal sense as the extinguishing of one’s life essences or forces. Under conditions in which the body fails, or dies a little, each time one is unable to be moral in the ways that make life possible, what is the difference between living and dying? Here, the turn to the use of fire may be equally overdetermined among those who choose to use their bodies to resist occupation. It is not hard to see why setting oneself on fire becomes, for some Tibetans, a therapeutic option. A change in form is called for.

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A F F E C T A N D E N U M E R AT I O N

Ethical conflicts like the ones I’ve mapped out occur as affective experiences, as does the inhabiting of bodies in ways that make ethical experience the basis for corporeal existence. In everyday encounters in which Tibetans are made to feel not only frustration, but a deep sense of cultural loss under conditions of occupation, I would argue that affect produces a surplus of emotions and ethical demands that call urgently for action that produces monstrous responses. Over the past decades, these responses have taken the form of protests and, more recently, assaults on Chinese merchants who were burned alive in Lhasa storefronts. Now they take the form of Tibetans setting themselves on fire in acts of the ultimate defiance of perceived occupation but also ultimate acquiescence to a new set of demands about how to be ethical. Returning, then, to the problem of enumeration, I note that these regimes that are used to make Tibetans feel they are being cared for by the state also produce a kind of friction in relation not only to their everyday experience of life (and what it means to be living in an ethical sense) but also to their resistance efforts. Regimes of enumeration in Tibet are offered as a mode of being ethical, and yet such engagements often undermine Tibetans’ abilities to be ethical in ways that make life possible. In this space of friction, multiple strategies of political action are mobilized. Logics of internal moral worth are brought up against state-mandated forms of expression of ethicality. If Tibetans feel they must self-immolate in large numbers in order to be heard, from where do they get this idea if not from the linguistic nexus that is already given to them as a strategy for being ethical under Chinese governance? Stated another way: If it is in the numbers that China’s failure to win over the hearts and minds of Tibetans can be seen, then will it be in the numbers that Tibetans think they will, finally, be heard by them? Or, more critically, by observers like those of us who use rubrics like human rights to help them? Are they using numbers to counter the numbers, so to speak? Perhaps this, ultimately, may be what Tenzing referred to when he told me that Tibetans got this idea from the Chinese. I am arguing here for a reading of everyday ethics that is embodied and experiential, in which the options for effecting change emerge in this conflicted space of death in life, and in which strategies for being “seen” by being numerous (literally by becoming epidemic in proportion) are mingled with modes of being ethical by way of bringing about change through fire. Enumerative logics play a role in these performances of change making, serving as a sort of fuel to the fire of self-immolation. Tibetans now account for nearly a third of all politically motivated self-immolations that have occurred worldwide since the 1960s. These numbers should make a difference. Perhaps they will because the global stage is also one where counting, and high numbers, matter. Rather than sit uncomfortably with the possibility that this is true, and that consequently more and more Tibetans should join in in order to force change, I would offer a different ethical proposition. I wonder if we should be speaking numerically about them

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at all. Why would we use the same techniques of counting that are read by many Tibetans as a form of ethical assault upon Tibetan ways of living? Counting up self-immolations to show that something has gone tragically wrong in Tibet may contribute to escalating numbers of self-immolations. This is not an ethical solution; it is part of the ethical problem.27

T H E O RY A S V I RT U E

Imagine the face of a twenty-two-year-old Tibetan monk engulfed in flames. His grimace is torture, his hand waving wildly as his burgundy robes turn to bright orange. He is running as if to escape the searing of his flesh. People stand behind him, screaming but helpless; they cannot catch him in time to put out the flames. The discomfort produced as a visceral response to the suffering of a being who has decided to sacrifice his or her life by setting himself or herself on fire traffics in an affect that, in its imposition of a kind of violence of its own, also has great potential. Unlike the political martyr who kills others as well as himself for a cause, Tibetans are killing themselves for a political cause. In bearing witness to this violence, we may feel troubled, but in some ways, however unequal in its outcomes and however wretched in its aesthetic, in this witnessing we are also made to share the space of suffering inhabited by Tibetans. Inviting people to share this space is, in obvious ways, risky. It is hard to imagine how to read this act as one that is about virtue, about politics, or even about everyday ethical conflicts, when it is so clearly also about violence—about inflicting a kind of trauma not only on the victim but on those who have seen it. And this is, in part, my point. How can we make use of this productivity of affect—this surfeit of feelings about what is happening? How can we talk about its virtue or its causes in ways that justify (or simply explain) why it happens without simultaneously contributing to its escalation? Even more important, how might this productivity enable us to use this affective surplus in order to bring about change? Since Durkheim, suicide has been the case in point for a theory of society, both explaining its causes and defining a sociological method that would have some kind of efficacy. Others have pushed in similar ways to see suicide in relation not to the anomie of the individual but to the collective experience of structured oppressions. Supporters of both positions have probed for ever more sophisticated ways of providing evidence of suffering in order to reveal what is at stake for those whose lives are lost, but also to perhaps intervene upon the conditions that give rise to the desire for suicide, if we can call it that, in the case of Tibet. I have picked up on these threads here, in particular using Das’s concern with the relationship between pain and language, to understand how “ordinary ethical” experiences contribute to suffering in Tibet and to posit that the enumerative linguistic regimes of Chinese governance may be implicated in the way Tibetans are making sense of selfimmolations, escalating their number. My attempt in this exploration has been to move

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self-immolation beyond the terms of debate already framed by the political and human rights stalemates that currently both define the acts and render them somewhat impotent. The threads I trace invite us to think through theory and interventions in terms of these enumerative logics and, in contrast, the affective possibilities of self-immolation. My argument is that affect is experiential, not just conceptual. This is as true for Tibetans who must contend on a daily basis with choices about how to be “ethical beings” as it is for those of us who try to read and write about self-immolation as witnesses. Focusing on ordinary ethics helps direct our attention to the ways in which affective forms of evidence—with their emotional hooks, their aesthetic assaults, and their ethical imperatives—work to create conditions of both conflict and potential change. Affect, because it is experiential, has a way of being uncontainable by other kinds of reasoning. Emotions spill over and exceed the bounds that enumerative logics try to put on these sort of phenomena. Thus, I suspect that even though the growth in the numbers of selfimmolations generates an affective response of its own, it is not the numbers that will help Tibetans to move the political conversation forward, because those enumerative strategies are already in some sense owned by the very infrastructures that oppress them, and that now, in human rights terms, are causing more and more to die.28 Rather, I suspect that it will be in the visceral and emotional experience of these deaths, and in knowing how they emerge from a place in which individual corporeality of death in life makes self-immolation possible, that affective evidence will do its work by repeatedly translating self-immolation into a problem of virtue. I would argue—in the way Zigon and Throop (2014) have identified emotion as that which lies between conceptual reflection and embodied recognition—that it is here that affect enables an opening for possibility and perhaps for a kind of moral change, or even a change of minds. If this is the moment where a change of mind might occur or, more important, a moment in which in order to change minds we must be situated in this affective space, then it has done its work. In the emotional upheaval that comes with recognition of the suicide as not only a form of speech but also an enacting of virtue about the embrace of death as a way to change things, we are asked to think about what is being asked for on behalf of and in relation to not just Tibetans but also Chinese and all of us who are looking on from a distance, from our modern secular perches.29 In order to move beyond enumeration, then, one might hope to make a case for the global “n of 1” or, as Clara Han suggests (chapter 28), a case for recognizing that the “one” here is a one of “one too many,” set in relation to an expansive “all.” It suggests that the one is enough, or perhaps already too much, in its ability to stand for the suffering whole. The “n of 1” here is not encompassed by enumeration but is standing outside of it. In order for it to be virtuous, the self-immolation and its capacity to be a sacrifice for all is not dependent upon a counting of its instances or its audiences. In fact, in order for it to be virtuous, it is dependent not only on the one who immolates but also on how we receive it as members of the inclusive and expansive field of its reception—something akin perhaps to what Tibetan Buddhism claims in the notion of a “merit field,” which is taken

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to be the ethical universe within which we live in morally accountable and culpable ways. The counterpoint a moral affect offers to enumeration should in this sense be dependent on no more than the “one” in the sense offered by Wittgenstein—that “the universe cannot suffer more than the suffering of a single individual.”30 Thus, if we take self-immolation as an affective form of evidence, we might read Tibetans as saying to us in loud shouts not only “LOOK AT ME,” “LOOK AT ME,” but, more important: “DO SOMETHING.” Tibetans are asking us to lay claim to their burned and charred bodies as something we might to respond to in ways that attend to the very kinds of ethical possibilities that define, for them, being Tibetan. Perhaps what is needed is thus not so much a reimposing of the terms of intervention that we already know don’t work—whether in enumerative exclamations or in the old worn political stalemates. Perhaps what is needed instead is an unraveling of what has been set in motion on the global landscape in order to create a new kind of ethical possibility found in the feelings aroused, for better or worse, by this type of death. Perhaps Tenzing is right that in the end, self-immolation may change people’s minds, but let us hope that he is at least wrong about how many more it will take to make this happen. N OT E S

Tibet on Fire is the name of a Web-based listserve media organization that posts information about pro-Tibet activities and news (www.tibetonfire.org). An earlier version of this chapter was presented at the conference Human Rights in Translation: Bodies of Evidence, sponsored by the International Institute and the Department of Comparative Literature at the University of Michigan, October 26, 2012. I benefited from comments by Michael Lempert and David Porter on that version of the chapter. And many thanks to Carl Walesa for editing help. 1. Songpan, “China’s Restive Tibetan Regions/No Mercy: Self-Immolations Continue, As Does the Communist Party’s Hardline Policies,” Economist, November 12, 2011, www .economist.com/node/21538173. 2. Adding to the growing group of sophisticated and sensitive voices writing and speaking about these acts is not an easy task, and not one that should be undertaken without a sense of purpose or without respect for those who have already done so. An excellent collection was put together by Carole McGranahan and Ralph Litzinger (2012). I suggest, in keeping with these sensitive analyses, that there is more to our task than simply getting the politics of the suicides correct, or noting that these suicides have galvanized political engagement for support of Tibetan independence (Sperling 2012). My question, following that asked by McGranahan (2012) in relation to pedagogy, is: How do we, as social scientists, make the suicide-immolation meaningful in and through our analysis, but also impactful? 3. For an example of a visual experience of this, see Lucy Li, “Young monk died from selfimmolation in Tibet,” Free More News, July 18, 2012, fmnnow.com/2012/07/18/young-monkdied-from-self-immolation-in-tibet/. 4. International Campaign for Tibet, www.savetibet.org/resource-center/maps-data-factsheets/self-immolation-fact-sheet. See also Phayul.com for up-to-date news: for example, www .phayul.com/news/article.aspx?article=China+arrests+two+monks+in+Golok%2C+expels+ 614

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schoolteacher&id=34367 offers 123 self-immolations. The numbers vary depending on the source. For these numbers, please visit the Web sites. See also Voice of America reports. The first Tibetan self-immolator in recent times was Ngodup, a retired veteran in India in 1998 (L. Gyatso 2012). Woeser (2012) notes that three self-immolations have occurred among Tibetans in exile. 5. I note below that there is one sixteenth-century case of a monk who self-immolated for politico-religious causes, and ample debate about the parallels between these immolations and the notion of sacrifice as demonstrated by actions of the Buddha in previous lifetimes. 6. Nearly half of the immolators have been monks or nuns, some of whom were highly educated and revered Buddhist teachers. Most of the immolators have been men, though roughly a fifth are women. About 80% of the immolators have succeeded in killing themselves. 7. Stephanie Brigden, the director of Free Tibet, lends credence to the possibility that selfimmolation is in part a result of Tibetans hoping to get people outside of Tibet, and outside of China, to hear them. In a report to the Voice of America, she notes that “Tibetans want change. . . . I think the fact that Tibetans are using self-immolation as a form of protest illustrates that there really is no other political recourse, legal, or other recourse that Tibetans can utilize to be heard, either in Beijing or internationally” (“One Dead After Two Tibetans SelfImmolate,” accessed August 7, 2012, blogs.voanews.com/breaking-news/2012/08/07/onedead-after-two-tibetans-self-immolate/). Emily Yeh (2012) also offers the insights of a Tibetan scholar who says of the self-immolators: “They’ve given us courage. No one thinks that selfimmolation will lead immediately to independence. But this is a way of letting the world know what is happening, so that the world can see the truth.” 8. See, for example, “China: UN Members Should Address Rights Crisis in Tibet” (New Park Forest, IL, accessed September 20, 2012, www.enewspf.com/latest-news/latestnational/36745-china-un-members-should-address-rights-crisis-in-tibet.html?tmpl = com ponent&print = 1&page =). Although I have been writing a book about these Tibetan experiences (several nearly published manuscripts, in fact), others now offer ethnographic details about conditions of life in urban Tibet. In particular, I note Barnett 2006, Makley 2007, and Yeh 2013. 9. Even the Chinese government has had to step delicately around this question, leading it to, at first, blame the immolations on immolators themselves. They were “mentally unstable” or “troubled,” or they were “hooligans,” consumed with guilt over purported criminal acts, like theft. The most famous of the immolators, a senior scholar named Lama Soeba, was characterized as having broken his monastic vows by having sexual relations with a married person (L. Gyatso 2012). Take this view found in a Xinhua News Agency report: “By playing up the Tibet issue in the international community and smearing China’s ethnic policy, they intended to create excuses for the so-called ‘independence of Tibet,’ ” said Ms. Hua Zi in a November 2011 interview with Xinhua News” (cited in “Buddhist Mother Self Immolation Death Sparks Growing Concern for Tibetans In China,” by Lys Anzia, Women News Network, accessed August 9, 2012, http://womennewsnetwork.net/2012/08/09/buddhist-mothe-selfimmolation). Eventually the official rhetoric shifted blame to the Dalai Lama, arguing that he has fueled enough anti-China sentiment among Tibetans to compel them to self-immolate. That the terms of conflict have devolved to a level of everyday violence for both Tibetans and other Chinese citizens is made visible in the fact that this rhetoric has apparently fueled enough “TIBET ON FIRE”

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hostile anti-Tibet sentiment among Han Chinese to prompt postings on Internet blogs about wishing the Dalai Lama would himself self-immolate! (Woeser 2012). Meanwhile, Tibet scholars noted that the idea of suicide as a sacrificial political act was, in fact, something introduced to Tibetans by the Chinese, in the figure of Lei Feng, a “model soldier of the 1960s” who exemplified the ethics of self-sacrifice for the good of the nation (Shakya 2012). 10. See L. Gyatso 2012 for a good description of some of this theater. Makley (2012) considers the suicide protests as a situated form of communication that enables dead bodies to have political lives that live beyond their enactment. One consideration is what Loren Coleman argued is a copycat effect in which the circulation of media images of self-immolators can lead to their escalation. This is surely true for Tibetans, who are more inspired to follow suit the more they see and hear about these self-immolators. This was particularly true for selfimmolation in India, where, Coleman notes, self-immolation has become a way of protesting or demanding even the most mundane things, like increased pay (Loren Coleman, The Copycat Effect: How the Media and Popular Culture Trigger the Mayhem in Tomorrow’s Headlines [New York: Paraview Pocket–Simon and Schuster, 2004]). 11. As with most acts of resistance by Tibetans in China’s Tibet, the response on the part of the government is to crack down even harder and impose stricter restrictions on daily life, speech, and action. They don’t change. They aren’t moved by the self-immolation of Tibetans. Likewise, the exile government in Dharamsala redoubles its campaign and calls even more loudly for independence—a strategy that seems to have had very little impact on changing policies about Tibet in China. The efficacy of self-immolation here remains questionable. On the one hand, the acts of suicide strengthen the visibility of the movement for an independent Tibet and galvanize international support. On the other hand, the reduction of self-immolation to a political speech act has the unintended effect of also muting its potency, of subverting the act itself to a mere political statement about the contest between Tibet and China. 12. Moreover, the self-immolation suicide shares nothing with the suicide bomber, as Yeh (2012) and Shakya (2012) note, since the self-immolation suicide takes no life other than his own (even if he shares with the suicide bomber the sense of violent resistance). 13. Thanks to Sara Lewis, who reported this (personal communication) from Dharamsala in October 2012. See also Craig 2012 and Tan 2012 for more on perceptions among Tibetans in Tibet of the cultural and affective dimensions of self-immolation. 14. This was an audio recorded message, translated by Bhuchung D. Sonam, spoken by Lama Soeba in Dharamsala, India. See “Tibetan Lama Urges Unity” 2012. 15. The precedent is according to the sixteenth-century scholar Pawo Tsuklak Trengwa (Warner 2012). Warner (2012) also offers a nice set of insights about how social media are involved in mediating these suicides and attempted suicides. 16. Giovanni Da Col (2012) makes the interesting move of reading self-immolators in terms of religious practices of sacrifice, and in particular the use of effigies as “scapegoat” entities in ritual exorcisms. Here, he notes, one might think of the immolators as serving as a sort of conduit for the casting off of the state’s claims. Interestingly, he also notes that “[i]t is not preposterous to think that within this cosmological paradigm, a single self-immolator could protect and benefit the whole Tibetan nation.” It is worth drawing this to its logical conclusion: that if self-immolators are the sacrificial offerings, then it is for the purpose of chasing out the demonic and haunting presence of the Chinese state and its oppressive colonial policies. However,

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others take issue with the idea that immolators would identify with something as hideous or reviling as the scapegoat effigy. 17. See also Makley 2012, Barnett 2010, and many accounts on the Free Tibet and Campaign for a Free Tibet Web sites, and also some of my own work (Adams 2008, 2005a, 2005b, 1998, 1996). 18. Inspired, for Das, by a strand of philosophy found in the works of J. L. Austin and Stanley Cavell. 19. I attribute this in part to a modern sensibility that entails a sort of reflexivity about themselves in ways that transcend a version of this already found in Tibetan Buddhism. Again, I am not suggesting a romantic version of Tibetans as uniformly religious or virtuous in their commitments to religion, or even uniformly ethical in their everyday lives. In generalizing about “Tibetans” as a whole here, I am thinking more of a general cultural ethos that Tibetans variously ascribe to a way of thinking about themselves as “Tibetan” (following Rabindranath Tagore’s portrayal of the struggle among Bengali modernists in The Home and The World). It is an ideal that informs their actions, and it is an ideal that modernity, through its demands for a type of ethico-cultural reflexivity, has made more imperative than ever. 20. This is taken from the article “China Is Good for Tibet,” by Isaac Stone Fish (Newsweek, February 16, 2010). Fish also quotes from Mel Goldstein and Gray Tuttle in this article. http:// www.thedailybeast.com/newsweek/2010/02/16/charity-case.html. 21. “Facts and Figures: Tibet’s Population.” Accessed January 27, 2015. http://is.chinaembassy.org/eng/zt/ChinasTibet/t427565.htm. 22. See Adams 2008. I also note that exile Tibetans have been very good at producing statistics of their own in counterclaims that account, in evidence-based ways, for all of the violations against Tibetans, including (as mentioned) numbers of arrests, incarcerations, executions, and now, of course, self-immolations. The use of this kind of evidence is partly what I am interrogating here. 23. Andrew Fischer (2012) writes, “Chinese Sichuan government officials in 2007 . . . admitted then that although their economic strategies had been thus far a success (from a government perspective), their political strategies of creating stability had been a dismal failure.” Accessed January 26, 2015. http://www.culanth.org/fieldsights/100-the-geopolitics-ofpolitico-religious-protest-in-eastern-tibet. 24. Veena Das, personal communication, January 18, 2013. 25. Woeser, a Tibetan opposition writer, summed up Tibetan fears when she said in a video report on the topic: “Modern development should not be an excuse for assimilation with the Chinese. At the end of the process, if you lose your culture, religion and many other things, then you become another ethnicity. Then, nothing means anything anymore.” She then reminded us that despite China’s claims to having public support among Tibetans, in fact “China relies on military strength not public support for stability in the region.” See “Reuters: ‘China Spends in Tibet to Little Gain’ ,” September 29, 2012 (video report, accessed October 1, 2012, www.examiner.com/video/china-spends-tibet-to-little-gain-1.) 26. See Craig 2012, where this set of considerations (about the body and its virtue) is set in relation to self-immolation and the question of what constitutes a good death. 27. Sonam Dargye, a forty-four-year old father of three from the town of Rongpo, was the second Tibetan in the Rebkong area to set fire to himself, which he did on March 19, 2012.

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28. I recognize that there are arguments to be made for the use of numbers to do the work of politics and affect that are called upon in this case. In fact, one might argue that it is precisely because of the large numbers that people have been moved to do something and call for action to end the occupation of Tibet. There are numerous human rights efforts that rely on the specific use of enumeration to show that human rights atrocities have been committed, and it is often only through the generation of numbers that the violation is made visible. (Patrick Ball is a key figure here.) Das notes that in some cases the argument could be made that it would be unethical to “count” things like deaths or self-immolations specifically because numbers are not neutral and measuring through counting can carry affective dimensions that do the work of political rectification (Das, personal communication). I acknowledge this point of view and think that these logics may also be at work in the case of Tibetan self-immolations. I would also point to the counterexample of how “counting” logics can coexist with ethical effects in ways that have little to do with numbers or investing the numbers with a power all their own. The Buddhist story of the Buddha’s admonition to a mother who is inconsolable because her child has died that she should go house to house in her village and see if there is any house in which there has not been suffering or loss like her own is a case in point. Enumeration is an exercise that leads to a change in affect—the experience of compassion—and it is this perceptual phenomenon that is the source of enumeration’s power, not the idea that the number somehow contains a kind of truth-power of its own. 29. Another way to approach this problem of affect is in and through the work on compassion and states of exception. Following a circuitous path through the work of Maalki, Fassin, Agamben, Tiktin, and Redfield, one could explore the dangers of using affect to arouse intervention. The risks are that affective appeals require reductions of human experience to a kind of “bare life” and, in turn, arouse operations of emergency that further suspend not only rights but basic forms of civility and humanity. Elsewhere, I am writing about how these processes are turned upside down in the case of Tibetan self-immolations; self-immolation invests the person who has been stripped of sociopolitical existence with a kind of luminous power of both sociality and political force. Simultaneously, such acts strip the government, which has the capability to impose emergency decrees through martial law (and in fact has done so repeatedly over the past sixty years in Tibet), of its power to effect control in this way. But that is another paper. 30. I am borrowing phrasings here from both Clara Han and Veena Das (personal communication).

REFERENCES

Adams, V. 1996. “Karaoke as Modern Lhasa, Tibet: A Western Encounter with Cultural Politics.” Cultural Anthropology 11 (4): 510–46. ———. 1998. “Suffering the Winds of Lhasa: Human Rights, Cultural Difference, and Humanism in Tibet.” Medical Anthropology Quarterly 11 (2): 1–28. ———. 2005a. “Moral Orgasm and Productive Sex: Tantrism Faces Fertility Control in Lhasa, Tibet, China.” In Sex and Development, edited by Vincanne Adams and Stacy L. Pigg, 207–40. Durham, NC: Duke University Press. ———. 2005b. “Saving Tibet? An Inquiry into Modernity, Lies, Truths, and Belief.” Medical Anthropology 24 (1): 71–110.

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———. 2008. “Modernity and the Problem of Secular Morality in Tibet.” In Figurations of Modernity: Global and Local Representations in Comparative Perspective, edited by Vincent Houben and Mona Schrempf, 105–20. Frankfurt am Main: Campus Verlag. ———. 2013a. “Evidence Based Global Public Health: Subjects, Profits, Erasures.” In When People Come First, edited by J. Biehl and A. Petryna, 54–90. Princeton, NJ: Princeton University Press. ———. 2013b. “Metrics of the Global Sovereign: Numbers and Stories in Global Health.” Paper presented at the Department of Social Medicine, McGill University, September 18. Barnett, Robert. 2003. “Essay.” In The Tibetans: A Struggle to Survive, by Steve Lehman. New York: Umbrage Editions. http://www.columbia.edu/cu/weai/documents/LEHMN2b.pdf. Accessed January 26, 2015. ———. 2006. Lhasa: Streets with Memories. New York: Columbia University Press. Craig, Sienna R. 2012. “Social Suffering and Embodied Political Crisis.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org /fieldsights/97-social-suffering-and-embodied-political-crisis. Da Col, Giovanni. 2012. “Five Armchair Reflections on Tibetan Personhood.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org /fieldsights/99-five-armchair-reflections-on-tibetan-personhood. Das, Veena. 1997. “Language and Body: Transactions in the Construction of Pain.” In Social Suffering, edited by A. Kleinman, V. Das, and M. Lock, 67–91. Berkeley: University of California Press. ———. 2006. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Fischer, Andrew M. 2012. “The Geopolitics of Politico-Religious Protest in Eastern Tibet.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://culanth.org /?q = node/530. Gyatso, Janet. 2012. “Discipline and Resistance on the Tibet Plateau.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights/96discipline-and-resistance-on-the-tibetan-plateau. Gyatso, Losang. 2012. “The Information Gauntlet.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights/107-the-informationgauntlet. Litzinger, Ralph. 2012. “Tibet Talk—On Life, Death and the State.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. Makley, Charlene. 2007. The Violence of Liberation: Gender and Tibetan Buddhist Revival in Post-Mao China. Berkeley: University of California Press. ———. 2012. “The Political Lives of Dead Bodies.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. McGranahan, Carole. 2012. “Teaching Tibet in a Time of Precarious Emotion.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org /fieldsights/116-teaching-tibet-in-a-time-of-precarious-emotion. McGranahan, Carole, and Ralph Litzinger. 2012. “Self-Immolation as Protest in Tibet.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://culanth.org /?q = node/526, http://www.culanth.org/fieldsights/93-self-immolation-as-protest-in-tibet.

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Pemba, Dechen. 2012. “Mourning Online.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights/110-mourning-online. Shakya, Tsering. 2012. “Transforming the Language of Protest.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights /94-transforming-the-language-of-protest. Sperling, Elliot. 2012. “On the Questions of Why and to What End.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights/106-onthe-questions-of-why-and-to-what-end. Tan, Gillian G. 2012. “The Place of Hope in Acts of Protest and Offering.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org /fieldsights/101-the-place-of-hope-in-acts-of-protest-and-offering. “Tibet Situation ‘Tragic,’ Says Potential Next Dalai Lama.” Bangkok Post, September 24. Accessed September 24, 2012. www.bangkokpost.com/news/asia/313693/tibet-situation-tragic-sayspotential-next-dalai-lama. “Tibetan Lama Urges Unity, Nationhood Before Self-Immolating,” 2012. Tibetan Political Review, February 2. Accessed July 28, 2012. http://www.tibetanpoliticalreview.org/articles /tibetanlamaurgesunitynationhoodbeforeself-immolating. Tsing, Anna. 2005. Frictions: An Ethnography of Global Connections. Princeton, NJ: Princeton University Press. Visveswaran, Kamala. 2011. “Genocide/Genre: Rethinking the Archive of Sexual Violence” Lecture given at the Western Humanities Alliance and Center for Humanities and Health Sciences, University of California, San Francisco, November 7. Warner, Cameron David. 2012. “The Blazing Horror of Now.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights/115-theblazing-horror-of-now. Woeser. 2012. “Self-Immolation and Slander.” Translated by Kevin Carrico. Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org /fieldsights/105-self-immolation-and-slander-woeser. Yeh, Emily T. 2012. “On ‘Terrorism’ and the Politics of Naming.” Hot Spot Forum, Cultural Anthropology Online. Accessed April 11, 2012. http://www.culanth.org/fieldsights/102-onterrorism-and-the-politics-of-naming. ———. 2013. Taming Tibet: Landscape Transformation and the Gift of Chinese Development. Ithaca, NY: Cornell University Press. Zigon, Jarrett, and Jason Throop. 2014. “Moral Experience: Introduction.” Ethos 42 (1): 1–15.

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SECTION 5

DEATH AND DYING

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Writing in 1972, Johannes Fabian lamented that investigators of death in modern society had become mere spectators of the primitive, offering up “their deaths” as violent and exotic counterpoints to “our” deaths, seen as peaceful and rational. The imperceptible transformation of culture into folklore, he felt, was a way of eluding the question of the universal significance of death. The chapters in this section show the distance anthropology has traveled in redefining how experiences of death and dying might provide a key to the transformation of institutions and experience in contemporary societies. The two terms, death and dying, joined by a conjunction, are, however, not symmetrical: they refer to different regions of experience and are joined to the idea of life in different ways. It is a commonplace of both psychoanalysis and philosophy that one cannot claim experience of one’s own death, for the subject narrating this experience is implicitly seen to have survived that death. Though one might, indeed, never have a genuine embodied sense of one’s own extinction, the chapters in this section interrogate the very privileging of individual experience and the positing of a self-sufficient subject in possession of her experience. Instead, foregrounding how death might be seen as relational allows us to think of both—how death is present within life, and how dying is not simply something that happens to individuals but calls forth a response from all those affected by this process as much as it does from the dying person. In the opening chapter of this section on what we already know about death, Michael Lambek (chapter 35) argues that all societies have a tacit knowledge of death, expressed and even dramatized in myths, rituals, and other forms of cultural performances. These collective products of societal creation show the intimacy between life and death, each becoming the condition of the other. Substituting the ideas of animation, de-animation, and reanimation for those of living and dying, Lambek refocuses our vision and asks, What is it that dies in the event of death and what is it that lives? Lambek’s questions—Do death and life come in parts or in whole? What criteria might we use for deciding what lives and what dies? Is it an organ, the organism as a whole, the life-form, or the whole biosphere that lives and dies?—are not esoteric, rhetorical, or metaphysical questions addressed to the expert. These are questions that societies ask of themselves, and we can track their unfolding in rituals of sacrifice, of shamanism, and in the myths of beginnings and endings. There are two different and even opposed contexts in which the problematic of death and dying is engaged in the chapters of this section. In one case, as in Robert Desjarlais’s chapter (chapter 36), set among the Yolmo Buddhists in Nepal, the scene is that of an ordinary or normal death. We might see Harry M. Marks’s extraordinary record of medicalized dying (chapter 38) along with Roma Chatterji’s account of how she learned to relate to a dying woman (chapter 39) as being about death’s potential to unsettle the ordinary rhythms and taken-for-granted trust in our ways of being by its very normality. In another

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chapter, death is encountered in a violent setting in which a vast part of the population has been targeted through genocide (chapter 41, by Anne Yvonne Guillou). At a tangent to these two scenes are the chapters by Anne Allison (chapter 37) and Lisa Stevenson (chapter 40), where the surface normality hides turbulent waters in which lonely old people are arranging mock funerals for themselves in Japan or death by suicide has become ubiquitous among the Inuit in Canada, who have been subjected to medical reform by a paternalistic state. Death here registers on the body through unbidden thoughts and dreams that besiege the survivors. Though the differences in the contexts in which death is experienced are profound, there is a similarity in the manner in which one might read these chapters as providing a way of seeing how individuals and whole communities become apprenticed to death. As Desjarlais says, the death of an individual is a singular event that, however normal or ordinary it might be, cannot be simply derived from cultural discourses or representations of death. In the case of the old Yolmo man in this chapter, whose death we witness through the mediation of a videotaped rendering prepared for his absent son and the narratives that grow around his death, we are made aware of how much work the dying do to leave things “all right” for the living. To be apprenticed to death then means that for both the dying person and the caregivers and survivors, the issue is of coming to death not so much in general but with the particular—a sense of an ending here and now in relation to a concrete other as body, as person, as future memory. Consider the different ways in which the dying person in these chapters himself or herself cultivates the conditions to die well. Desjarlais speaks of the work dying persons do for what he calls a “creative subtraction” of their place within the world. Thus, they try to dissolve their attachments to the world, visualize the forms of Buddhist deities, and contemplate the impermanent nature of all life. On the other side, Anne Allison captures the sense of disquiet as more and more elderly people die alone in Japan in conditions of what are being called “lonely deaths” or “relationless deaths.” Allison connects the conditions of the lonely elderly with that of the withdrawn youth who might be living with parents but are affectively alone. But along with the death of sociality we find new forms such as “rental intimacy,” in which a make-believe sociality is created through the market. We might ask whether this form of intimacy is different from that created through “professionalization,” as when the management of death becomes a matter for trained nurses or death counselors in the space of a hospice or a nursing home. Two of the chapters (38 and 39) describe what happens in medicalized spaces. Harry M. Marks gives expression to his sense of ending as a patient in the medicalized space of an oncology outpatient facility—though Marks is no ordinary patient, seeing, as he does, the medicalization of death through the professional eye of a historian of medicine: confirming and correcting through his own experiences in a dying space what he had learned of the medicalization of death. In the other case the author, Roma Chatterji, is being initiated into forms of care for the dying as she prepares to undertake a study of Regina Pacis, a nursing home dedicated to the care of the terminally ill and the dying in a small Dutch town.

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Harry Marks’s extraordinary notes on his experiences as a cancer patient whose disease has resurfaced and his battle with shaping the form of his dying are impossible to summarize, but he relentlessly fights any urge to sentimentalize his condition and puts an obligation on us as readers to collaborate with his almost biological urge to not let go of the analytical spaces he has carved in this milieu. “Ugh, already the chemo fatigue, I think.” Or “What’s it all for?—I ask not existentially, but as an accountant (or the Congressional Budget Office) might.” We find that the blog he kept educates us as much as the experience educated him about what is happening to his body, how the attentiveness to his experience is a part of the tapestry of experiences he witnesses as he waits in waiting rooms, while he receives drips, while he seeks an answer to a legal question. Clearly a Yolmo Buddhist way of shaping one’s end of life is not the same as the professor’s way of feeling astonishment that a body can change so much: “What kind of extended bodies are these, anyway, Profs. Haraway, Löwy, Latour?” Roma Chatterji’s experiences as a death companion to two women who were assigned to her in the nursing home shows how we cannot apply previously acquired knowledge to the scene of dying. In a subtle analysis of the unstated norms that emerge in the nursing home, Chatterji shows how keeping order in the wards is not simply about the application of rational techniques, but about trying to keep the rage against death in some kind of control so that it does not overwhelm either the nurses and social workers or the patients. Describing the anguish of one of the women who was dying, Chatterji says, “She was fully conscious of the hopelessness of her situation. Her inability to communicate her anguish in words sometimes resulted in the most heartrending of screams that threatened to tear apart the fragile calm established in the ward. . . . The nurses were helpless, unable to communicate with her, and her fellow patients, absorbed in their own personal tragedies, seemed deeply disturbed by the open expression of the turmoil that seethed within” (704). The norm in the nursing home was for caregivers and patients to treat each other as polite strangers; the inability to deal with the physical decay of death and its demands on the living had to be rearticulated in the form of a dignified death. For Chatterji, her instincts, such as that to touch or stroke the person who was in her care, had to be calibrated to the way sensory regimes were disciplined in the medical facility. But this is not simply a difference in cultural norms; the norms here are shaping what is considered natural to the human. Thus the dying person is not simply culturally offended by a stranger trying to convey her closeness to her through touch; her body reacts. There could be other examples in which it would indeed be a matter of good manners, but here in the scene of dying it conveys the deep way in which our ideas of what is natural to the human are shaped by our forms of life. A much darker picture of medicalization and the operations of biopower come from Lisa Stevenson, whose chapter (chapter 40) shows how suicide encircles the stories that Inuk men and women tell about their dreams. How has the rational application of techniques by the Canadian state to prolong biological life managed to diminish the sense of a good life for the community, leading to high rates of suicide among the Inuk men and women in Arctic Canada? With exquisite sensibility, Stevenson shows us the longing for another time on the

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part of the Inuk—the lost Eskimo time written on the landscape. Longing for traditional activities that have been lost is how one becomes an Inuk, containing the ubiquity of the selfchosen death of relatives and friends by learning to revel in the present moment of longing or dreaming, making a recently dead friend or relative present once again. The time of the lost Eskimo past seems to contest the bureaucratic time of the biopolitical state and leads us to ask with Stevenson, What is the labor of keeping alive to oneself individuals who have died by their own hands, and how does it relate to the labor of keeping that possible other time alive? A simplistic description might have just rendered this as a problematic of tradition and modernity; it is that, but in allowing the story to unfold in this way, Stevenson truly expands our understanding of new folds that appear in the problematic of living and dying. What is it to honor the open credit of survival after a genocide in which a quarter of the population was killed or died of starvation? When Anne Yvonne Guillou (chapter 41) arrived for her fieldwork in rural Cambodia, it seemed to her that the genocide had left no mark. Instead of the obsessive recollections of the traumatic past that she had been led to expect, she found that people were engaged much more with making a living and rebuilding their lives in very quotidian ways. Yet slowly she began to see the complex feelings that haunted the survivors and that pertained to the question of what bad karma the dead (including their own kin) had acquired in their past lives to have merited such untimely deaths in such huge numbers. And why had the survivors been spared? Guillou tracks the complex notions of obligations to the dead from the localized versions of Theravadin Buddhism and shows how survivors learned to rebuild ties with the dead, helping them to move to a higher order of the world. They also rebuild ties with the land, finding statues of deities and of the Buddhas that were disfigured and thrown away and reinstating them in temples or shrines. The power of the rituals to redirect the negative energies of lives that were cut off and hence unlived into channels that can quietly reestablish the disturbed relations with the dead raises some very fundamental questions about what it is for a form of life to survive. In what way do Buddhist rituals of donating good karmas or providing feasts for the dead, become the anchors through which life might be reengaged by settling the dead? Contrasting this chapter with Filip De Boeck’s powerful description of the relation of the young to death in Kinshasa (chapter 42) gives a stunning picture of a darker side of rituals—that in which they might be innovated upon and parodied to express the utter destruction of the possibility of life worth living. De Boeck gives a vivid description of the collapse of the infrastructure of the city by focusing on the way that even graveyards become signs of urban decay. In Kinshasa the groups that come to most embody the sense of collapse are the urban youth, whose actions portray a complete break of any trust between the generations. In the graveyards the youth take charge of the death of young people, accusing the adult kin of the dead of having abandoned their own young. Instead of the traditional rituals, the youth express their rage through lewd songs and insults, exposure of body parts, miming copulating gestures with the “corpse,” and so on. De Boeck discerns a kind of politics in these practices by which the youth impress themselves on public places. But these

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languages, which simultaneously recall Bakhtin’s descriptions of the grotesque body through which hierarchy is upended, manage to convey here not a renewal of the human spirit but a scene of despair in which the youth end up cursing death and disease by these performances. De Boeck argues that through these performances that draw on a ritual syntax, the youngsters shape a future for older ritual forms of which they often do not even have firsthand knowledge, but which they nonetheless employ anew in the urban context, in a creative act of local actualization. One might ask then under what conditions the very deployment of rituals becomes not a sign of being in possession of one’s culture, as in the case of Kampuchea, but of enacting its loss. Otherwise said, when does a form of life slip into becoming a form of death? The final two chapters ask similar questions of what death might tell us about the conditions of life, but in a different register. Didier Fassin (chapter 43) starts with Maurice Halbwachs’s unsettling statement that there are good reasons to think that a society has the mortality that suits it, meaning that the distribution of mortality in a population is not a random distribution but reflects what resources a society is willing to put into extending life in general, but also how a cut is made between those whose life is to be saved and those who, to use the felicitous phrase of Foucault, are “let die.” Fassin carefully traces the contradiction at the heart of our contemporary world that holds on to the dogma on the one hand that human life is sacred, and on the other hand assigns different values to different categories of people defined by racial, ethnic, gender, or class hierarchies. The former aspiration to treat all human life as of equal value is represented in discourses such as those of human rights or humanitarian interventions to save lives—the latter in the practices by which different financial value is assigned to people based on calculations of their projected lifetime earnings when they are judicially or administratively compensated for injury or death, for instance, or in practices of exclusion all too evident in the way in which some people come to be defined as less than human, whose deaths matter less. Fassin also provides an important corrective to the narrative that traces the idea of sacredness of life and equal worth of all human beings to Christian dogma. Instead, he says that “Catholic raciology and eschatology establish that humans, divided between Christians and non-Christians, are naturally unequal, and that life—meaning restrictively the life of the Christians—is worthy only when it is sacrificed” (774). One might also track a different genealogy of the emergence of human rights discourse in the concrete work done by international agencies, as well as NGOs and rights activists in various national contexts in the 1970s, when anticolonial movements gave way to movements for monitoring the state in newly independent countries. Fassin’s chapter concludes by showing how a story about a concrete life to be saved moves the public much more to act than a demonstration of the statistical facts of inequality in health care access that might kill a much larger number but fails to mobilize affective force. Statistical life, as Fassin calls it after Thomas Schelling, is precisely the topic of the final chapter, by Rabia Ali and Jishnu Das (chapter 44). Examining mortality patterns over the life course of men and women as a lens through which to examine gender inequality,

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the authors ask if mortality patterns in low- and middle-income countries today are likely to follow the historical patterns observed in high-income countries that were characterized by a decline in relative female disadvantage in mortality since the early twentieth century, ultimately giving way to excess male mortality at all ages toward the end of the century. Whether the decline in female mortality was due to changes in the public-health infrastructure or an improvement in the status of women or a combination of these factors, the question Ali and Das ask is, Does the demographic transition in low- and middle-income countries follow the expected path outlined above? Based on their work on the data on mortality provided by the World Health Organization (WHO) until March 2013, they had earlier concluded that mortality transition in these countries was moving in the same direction as in the rich countries until the 1990s but was then derailed by the differential impact of HIV/ AIDS on female and male mortality, as well as excess male mortality in post-transition societies, such as Russia and Ukraine. Incidentally the authors also show that the risk of dying for adults in some countries in sub-Saharan Africa turns out to be higher than the risk of dying in countries that are in the middle of war or prolonged civil conflict. Finally, in some countries, such as India and China, the female disadvantage in mortality shows itself even before birth due to sex-selective abortion. However, there turns out to be a twist in the story. Ali and Das document that in the mortality data released by the WHO after March 2013, the estimates for the years 1990 and 2000 were revised, and that these revisions could lead to dramatic differences in the patterns of sex mortality rates for today’s lowincome countries. Using the examples of China, India, and Tanzania, they show that the new data are not comparable to the old in some cases (China and Tanzania) but closely resemble the old in others (India). The problem that arises then is that because, depending on the direction of the change, even seemingly small revisions in the mortality rates for men and women separately could lead to substantial revisions in the sex ratio of mortality (since this ratio is arrived at by dividing one small number [the mortality rate among men at every age] by another small number [the mortality rate among women at every age]), the estimations become pure guesswork. What does this whole story about numbers and narratives tell us about the way our geographies of living and dying are constructed? For Ali and Das, mortality estimates on which so much faith is placed in the global health community should be taken (at the minimum) with a large degree of skepticism and caution. For us, the editors, the story resonates with other accounts, such as those of the self-immolation by Tibetan monks in China and the biomedical interventions in Arctic Canada, in which, too, numbers are as much about politics as they are about rational, deliberative ways of managing life and death in the contemporary world.

REFERENCE

Fabian, Johannes. 1972. “How Others Die: Reflections on the Anthropology of Death.” Social Research 39 (3): 543–67.

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35 AFTER LIFE Michael Lambek

“Philosophy,” says Stanley Cavell (2010, 204), “does not seek to tell us anything new but rather to understand what human beings cannot on the whole simply not already know.”1 Whether or in what sense death is something that we human beings cannot not already know is itself an interesting question. Most people do know something about death from the personal experience of losing friends and family or witnessing death in road accidents, wars, or hospitals, and possibly also from personal intuition. Some cognitive anthropologists have lucidly argued that knowledge of death, learned also through the observation of the killing of animals for food or pleasure, is something that human beings cannot not already know (Astuti 2007, 2011). Another kind of knowledge about death, less experience-near, is what has been collected in the ethnographic record as mortuary practices, professions of an afterlife, mythological mediations, and so on.2 Anthropologists have rarely put these two kinds of knowledge together (but see Astuti and Bloch 2014) or moved from a knowing about death to an understanding of death. Indeed, producing knowledge about death may be one of the ways we deny or compensate for our inability to fully accept or understand it.

1

About death there cannot be much new to say. And yet what there is to say is something that every generation must know and say for itself. In fact, the very possibility of generation (of a new generation) is intimately connected to the death of prior generations. Every

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human being faces death, living in the knowledge (and usually the experience) of the death of others and the impending death of the self. Death is a certainty of life, ostensibly the opposite of life but also its very condition. Death is irreversible and incontrovertible. It is the fate of all living things3 and is the other to being.4 But death itself is also quite literally unimaginable; being dead is an oxymoron. Human beings have various ways to soften, repress, deny, or transcend this concurrent knowledge and absence of knowledge. It is arguable whether or in what sense public and collective means (mortuary rituals, etc.) increase or decrease knowledge, but they shape understanding, and they themselves become the objects of knowledge and subjects of understanding for anthropologists, philosophers, and laypersons alike. It is the ideas and practices concerning death that as anthropologists we come to know, not death itself.5 Since these practices are variable, ethnography, in contrast to philosophy, also contains much that, on the surface, we could not have already known; that is part of the point of it. Many people have argued that humans are driven by the anxiety of death, that mortality is the salient feature of our thrownness in the world, or that religions exist primarily to assuage our fear of death, or to rectify in their pictures and promises of the afterlife the injustices and uncertainties of this life. Religion may at times and places and for some persons do these things. But if the cumulative anthropological knowledge on the subject tells us anything, it is that mortuary practices and conceptualizations of life and death are surely larger than any given function we can attribute to them.6 An alternative to functionalism has been to understand cultural texts and practices as forms of mediation. Lévi-Strauss (1961) proposed that human beings are, by nature, by culture, mediators. What we attempt to mediate, he claimed, are binary oppositions. He did not say that the only opposition that thought mediates is that of life and death, and he certainly leaves open the possibility that in any given instance life and death could serve as mediating terms for some deeper opposition. Yet what if life and death are understood to stand in a relation that is not binary, or not only binary—for example, as interconnected or as incommensurable to one another—such that they cannot be compared or contrasted along a single measure? What if the binary perception is not primary?7 No terms are more common than life and death, no opposition more obvious than that between them. Yet we do not know with certainty what happens at death or what it is to die. Even medical scientists now argue over the criteria and boundary of life and death (Lock 2002), possibly approaching issues that religious thinkers have long recognized. Perhaps the terms are too simple, too static, too exclusive, turned on and off as though by a switch (as technology now makes possible), and too dependent on thinking in terms of the individual organism. Today, in some locations, it is possible to receive transplanted organs, whether from living or ostensibly dead bodies. But in that case the body part itself is not dead, leading to puzzles both ethical and conceptual;8 whose heart (or eye, etc.) is this; whose “life” is it; do death and life come in parts or in whole; are they criteria of the organ, the organism, the life-form, or the whole biosphere?

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We could speak instead of the animate and inanimate, of animation, in-animation, and reanimation. Carsten (2014) speaks lucidly of the suspended animation of life in the body on the operating table or in packets of donated blood. Does animation circulate, or is it better understood as reproduced? Is it continuous or discontinuous, personal or impersonal, mortal or immortal? Is this what we talk about when we talk about the soul?

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Bodies die and decay; bones and ashes lie silent. What happens to the life that inhabits them? Is it “life” itself that dies, or only particular, animate bodies? A philosopher might retort that, phrased this way, the question is nonsense: it is a category error to distinguish the life from the body.9 But the anthropologist will counter that this is a distinction that the majority of human societies (cultural traditions) do in fact make. The fact that a category error can be so widespread and popular itself calls for philosophical understanding. Distinguished from the individual body, perhaps “released” from it, what happens to life? Where does it go? Where and how is it stored or kept from dissipating? Does it circulate to other bodies, continuously or discontinuously, fully or partially, “naturally” and mechanically or as the result of deliberate human action (“performatively”), personally or impersonally, directly or as a distorted copy? In moving, how distinctive is it in the new bodies compared to the bodies it once inhabited? Does it transmit features of former living persons? What is the nature of the connection between old and new bodies or persons who share the same life force or substance? (Is soul substance equivalent to the genetic code?) Does the transmission of life substance take place only before death (as in conception) or also after death (as in ancestral blessing)? What is the connection between the generations, between the living and the dead? Is there an analogy, or even a direct connection—a further part of the cycle—between what is transmitted from parents to offspring in acts of conception, carrying the fetus, giving birth, or nourishing the child, and what is transmitted from the dead to the living or the living to the dead? Are relations of the dead to the living ones of “kinship”? We hear much from some quarters about animism, and much from other quarters about animation, in the sense of virtual reality, but what about animation in a more literal sense? How are material beings animated, can animation be transferred, how is it conceptualized, and can such conceptualization avoid, transcend, or repeal death (de-animation)? How different is animation, in its abstract, general, material, or physical sense, from personalization, from the individual uniqueness or social specificity of the named beings animated?

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The literature and ethnography of sacrifice speak to the question of animation and deanimation. For if life is released at death to be channeled elsewhere, perhaps this happens

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best or most easily when the death is controlled and deliberate, as was the case for the Dinka spear masters described to Godfrey Lienhardt (1970), Hindus who come to die in Benares (Parry 1994), Jains who fast to the death, or the many instances of regicide in sacred kingship.10 More controversially, is this the grand theme of Christ’s sacrifice and the Eucharist (Leach 2011) or a framework in which to think about suicide bombers (who, like soldiers, “give their life for their country” or cause)? Let us say, for the sake of argument, that there are two kinds of sacrifice. In the one kind you kill to give, definitively giving up one thing in order to possibly receive another— a death for a life. Here the death and the life are discrete from one another, separated by time and the reception and return of the gift. This kind of sacrifice can also be interpreted as destroying something in order to show your readiness, your commitment (Lambek 2007), your deference, your obeisance, your love, your determination, your willpower or will-to-power, your devotion, your craziness. So did Abraham (or Ibrahim) climb Mount Moriah with his son and his knife. (Here, though, the death was offered in return for a prior gift of life, the son given Abraham in his old age.) And so eventually, and in turn (and possibly long before, in Egypt or Mesopotamia), did God offer up his son, himself. So did Jesus climb Golgotha with the cross. So thereafter have Christians devoted themselves in return, though their devotion is never quite good enough, and even though, may God forgive me for saying it, Jesus was quite quickly resurrected, restored from his suffering—point made. De-animation is followed by reanimation. There is the twist. Christian reanimation is finally not with respect to life here on earth, but eternal life, in the hereafter. Earthly life is simultaneously valued through Christ’s sacrifice and devalued through his resurrection. The pain of life in this world is but sacrifice for well-being in the next. Mortal animation, interrupted by de-animation, is succeeded by immortal but otherworldly animation. Sacrifice here is understood in the first instance as a gift, but not just any gift—as a first gift and, in the Christian case, as an impossible, pure gift, with no justifiable or certain expectation of return. And yet with every expectation, Christians are promised they will be saved in turn. They partake of Christ if they are orthodox or Catholic, eat his flesh and drink his blood, and so ingest a piece of him (literally, they insist, not metaphorically), materially enabling their own eventual resurrection. Or maybe, if they are Reformed (and hence consume Christ only metaphorically), they are born again here on earth, reanimated by Jesus through his love or, if they are Charismatic, infilled and animated by the Holy Spirit, again here on earth but in anticipation of what is to come after. This materialized animation is premised on another model of sacrifice, quite apart from the gift. In the second kind of sacrifice, lucidly identified by Malcolm Ruel (1990) but called by him specifically “non-sacrificial ritual killing” (but because it is deliberate, among other reasons, I call it sacrifice), the point is not the gesture made to another. There is (need be) no Other, no recipient, and hence no gift and return; the aim is a more purely

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direct and material one of rechanneling life, of revitalizing a moribund world, a weary community, a sickly person, with the very stuff of life, captured in one body and transported to another. This is what James Frazer imputes to the sacrifice of the divine king and what Edmund Leach attributes to the Christ story. In parts of Africa the vehicle is chyme, extracted from one body (say, an ox) and spat onto another (usually a human). As Ruel aptly puts it, the significance lies not in the life of the ox, but the life in it. The Africans that Ruel describes are naturalists—supreme naturalists, not supernaturalists. (How could we have got it so wrong?) Life is taken from one being or state to apply it to another. There is only circulating life, no afterlife.11 In this second kind of sacrifice, where the aim is the capture and rechanneling of the life force, as in blood transfusion or transplant surgery, the death of the original vehicle is merely an unfortunate condition or accidental side effect. Whereas in the first kind of sacrifice, killing is precisely the point—the means, force, or principle itself—here sacrifice means the relinquishment, giving up, destruction, spilling, or wastage of something precious or dear. It is parting with, as Sakalava in northwestern Madagascar say, raha tsy foinao, precisely what you cannot part with. And Sakalava add (as many people do) that it must be given freely and willingly. A cow offered in sacrifice that moos in complaint when it is thrown is immediately released; such a beast is an embarrassing index that the gift is insincere or ambivalent. In the second kind of sacrifice, the death is merely an awkward necessity; if the effects could be produced without bloodshed, so much the better. (And as Ruel points out, very often the death is produced without bloodshed—e.g., by means of suffocation. In life, breath circulates freely beyond the body, and between bodies; in death it is stopped or contained. Blood circulates within the body; in death it is spilled.) Blood and breath, sacrificial and nonsacrificial ritual killing: one kind of sacrifice as a personal, intentional gift, the first move in a sequence of hoped-for reciprocity (albeit one where insofar as the original gift is destroyed it cannot be directly returned) or the giving of thanks or obeisance; and another kind of sacrifice as an objective, material redirection of life force. But perhaps not so different after all and perhaps often combined in a single practice. Perhaps these are merely local shifts of emphasis or interpretation of one and the same thing, relatively personalized and depersonalized circulations of life, based on the same premise—namely, that death is necessary to renew life. Are not Christian, Muslim, and Hindu offerings also about the channeling and renewal of life? Is that not what the Lenten fast, a form of relatively depersonalized sacrifice, and the Easter feast, its culminating inversion, tell us (Boylston 2014)? What hunters acknowledge in making offerings to their prey? What head-hunting is about? Are not all positive forms (I omit witchcraft, though it has its place here) of ritual killing about recirculating life? As Maurice Bloch puts it (1992), are they not about the rebounding of vitality? And do not otherwise instrumentally and materially conceived forms of circulating life also enjoy the passion and drama of the killing, heightening the energy or the expectation of the aftermath?

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Are these practices not also telling us we cannot take life lightly, that at the root of all human value is life itself (Lambek 2008)? If sacrifice expends value, enjoys its willful dissipation or destruction, does it not also posit (even or especially in human sacrifice) that human life itself is the ultimate value; it is only on behalf of life (of one kind) that it is worth expending life (of the same or another kind).12 If sacrifice is about the making or circulation of life, using de-animation as a means to reanimation, it asserts that there is no higher value than life itself. It is life (or life well lived) against which other things may be valued, against which their value is relative. And does not sacrifice mark a definitive break with what has come before, in order to build a new future? The killing of the old, as Dinka of southern Sudan saw, is necessary for the birth of the new. Does it not bind all the participants in a common commitment (sometimes sealed with a communal feast) to what has newly been brought into being? And is not what has transpired, what has been brought into being, a putting of the world, or of one’s relations in and to the world, under a new or renewed definition, making, or rather taking, or even staking, a new beginning? And is not that new definition, achieved through death, not one of established intention, direction, purpose, well-being, fertility, vitality—in short, of life? Life in its ethical no less than its biological sense.13 But if these performative intentions and effects shape the ethical force and message of sacrifice, and assist our understanding of sacrifice as an ethical practice, let us not forget Ruel’s point that there is also a directly material, organic process and understanding.

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Are these practices then not also all saying that without spirit there is no living matter? (Spirit, as Ruel puts it, and as many religious traditions do, is breath, is life.) Equally, perhaps, that without acknowledging matter (and how better to acknowledge it than to solemnly destroy it) there is no spirit? Perhaps they operate in a realm in which the material and spiritual are not as sharply distinguished as in some theologies or social science (cf. Houtman and Meyer 2012). We think of life and death in binary opposition to one another, absolute states and mutually exclusive. But everywhere they are not. The culmination of life is surely death, and the only way to make sense of death is surely life. They are two sides of a coin, and in fact literal coins are frequently what are placed in the mouths of the deceased, ready to help them make the passage, either from this life to an afterlife, or from death back to life. Without life there could be no death. Without death there could be no life. Death and life are the mutual conditions for one another. We don’t need fancy intellectuals or exotic rituals to tell us these things; they are things that every society has known, things that, as Cavell has put it, “we cannot not already know.” But perhaps this is also knowledge that every society has understood, elaborated, and interpreted differently.

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And so to northwestern Madagascar. Madagascar suffers from poverty, poverty that has grown over the years rather than receded. Many people do not get enough to eat; many suffer from malaria and infectious diseases; many suffer from conditions for which satisfactory health care is not available. And so, too many people die too young—in infancy, childhood, or young adulthood. At the same time, many live to a ripe old age, being still largely relatively free from the twin conditions of modernity that my friends in Mayotte, who have a larger but nutritionally less-balanced diet, call the disease of salt (hypertension) and the disease of sugar (diabetes). People in northwestern Madagascar are also unlikely to die from drug overdose or gunshot, from domestic violence or military violence or from leftover land mines.14 The frequency of death does not undermine its pain or poignancy for the living. But nor do the brute facts explain how people in Madagascar, widely reputed for elaborate burial practices, understand death.15 In their beautiful book on southern Sakalava funeral art, Sophie Goedefroit and Jacques Lombard (2007, 79) make the following startling remark: “The living and the dead of the same lineage are contemporaries.”16 Goedefroit and Lombard depict a world that is in many respects very different from the one inhabited by the northern Sakalava in Mahajanga whom I encountered. The people they describe are much further removed from the orbit of Islam, and they were visited by the ethnographers in the 1980s and earlier. The life in death that the authors describe, the burial practices and tombs, and most notably the erotic funerary sculptures that speak so directly to the connections of sex and vitality to death, are not things I have seen. I am attuned only to distant echoes. But the remark about the living and the dead as contemporaries is apposite. Malagasy people address these matters with a story in which humans were offered the choice between two models of life and death—whether to die like the banana tree or the moon.17 In the image of the banana tree, the old are cut down so that new shoots can rise: without death there would be nothing new in the world, no variety, no life. By contrast, the moon provides an image of life without full death but without reproduction either, a continuous and sterile cycling between half-death and half-life, a selfsame singularity. In the story, humans choose the banana tree. But in fact this story also provides a commoner’s perspective on Sakalava royalty. What distinguishes Sakalava ampanjaka, members of the royal clan, is that they appear to have chosen the moon (although I don’t know any myth that explicitly states the case). They live on in half-life after death (or halfdeath after life) by rising intermittently as spirits (tromba) in the living, and conversely, they limit the number of their offspring, contestants for their power (Feeley-Harnik 1991). Ritual work is centered on reproducing ancestors, not descendants. The core myth of northern Sakalava, which establishes the foundation of their dynasty, tells of a queen who chose both options, dying (like the banana plant) so that her son could rule, but as a condition of her dying, ruling out all competitors (Lambek 2002) and

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assuring her own commemoration and return (like the moon). Bound by their taboos, limited in their offspring, attending to their predecessors, and placed at a distance from ordinary people (olo chotra) through their higher status, members of the ruling clan are in some sense only half alive, but subsequently they are only half dead as well. Implicitly, there is a kind of sacrifice here, a sort of Faustian bargain. Alongside royalty are servants, the kinds of people referred to explicitly as “ancestorpeople” (razan’olo), who attend on the death of royalty, whether by treating the bodies of “fallen” monarchs (a euphemism; it is forbidden to say that members of the royal clan “die”), guarding their graves in perpetuity, or serving at the shrine where ancestral relics are kept, and hence live a kind of half-life as well. In the old days (it is said), a youthful ancestor person was killed at the death of a sovereign, and perhaps another at the annual ceremony to bathe the relics. The victims provided the blood necessary at all momentous occasions and today provided by cattle. The death of the ancestor person, whose corpse became the “mat” or “groundsheet” of the monarch, was final and unambiguous. Although not understood to be causally related to the monarch’s ability to rise again, the death of the slave or ancestor person also partially replaced or displaced the royal death, complementing the reappearance of the monarch in a kind of half-life.18 This reappearance in half-life is what I elsewhere call spirit possession, in which halfdeceased members of the royal clan (and a few of their servants) attach themselves to the bodies of selected living persons, making demands on the daily bodily practices of their mediums and at times rising and speaking through them. As the spirit enters the body of the medium, and as the medium’s body animates the spirit, it is sometimes made explicit that the spirit arrives from under the burial shroud. Thus the royal death is an incomplete death in which the deceased returns periodically and in a kind of reflected and reanimated form. In their subsequent durability (lasting forever), their periodicity (coming into presence and leaving it again), and their being not quite the full or whole living person, the spirits of the deceased who come to possess people and speak through them are like the moon. I think of the world in which people reappear after death, like the moon, as a sublunary world, the world under the sign of the moon, the world in reflected half-light. The moon is visible indirectly, as a reflection of the sun. If darkness opposes light or night opposes day, so the moon mediates those oppositions. But as a light opposed to the darkness of the night, it is a secondary one, a kind of half-light. It is the negation of the negation of light. So, too, are the spirits a negation of the negation of life. Circulating between their tombs and the bodies of their mediums, the spirits are in a state of halfdeath and half-life, a reflected, evanescent, sublunary form of life. Sakalava say of the moon that it dies monthly. Its monthly death, rebirth, growth, and decline are evident to anyone who lives outside a town, where nights are otherwise dark and horizons broad, but even in a big city like Mahajanga, where the street lights are dim and far between. Weather permitting, the full moon is bright, regular, and predictable. Sakalava assert that actions are more propitious if they are started when the moon is on

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the rise, not the wane. Spirit mediums bathe in the ocean each month at the new moon, and royal ancestral work happens when the moon is full. The force of the ocean (rano masing; literally, “sacred/potent water”) is evident in the tides, as pulled by the moon. Public events for spirits happen only at night, and the more senior the spirits, the later in the night their appearance. When spirit mediums immerse themselves in the ocean at the beginning of each new month, they often toss a small coin into the waves. They also keep a large silver coin at home on their altar table, generally in a white dish, with water and white clay. The water in which the silver rests is used to bless and purify people. The coin is linked to the person of the spirit, purchased when the medium first becomes actively possessed by that spirit. A medium with many spirits tries to have a coin for each of them. Indeed, the person of whom the spirit is the animated half-life lies in a grave that contains a similar silver coin, resting either in the mouth, where it was placed before burial, between the jaws, or in a white plate adjacent to the head. All members of the royal clan are buried with such a silver coin, probably even those whose burial practices otherwise accord with Islam or Christianity. And when the spirit rises for the first time in a new medium, the lips are wiped with such a coin (or with a silver bracelet), or the coin is spat out from the mouth (as though the corpse were rising from the grave), so that the spirit can speak, or can speak clearly and truthfully. Royalty are closely associated with precious metal; their clans are known as the Descendants of Gold and the Descendants of Silver. The coins were once currency, withdrawn from the market as material signs of royal power and duration. Likening money explicitly to speech, the words for speech and for money or precious metal are homonyms, vola. Like pure or real silver, the words of the spirit should be real, solid, and truthful, not counterfeit. They should have incommensurable value. The word for month and moon, fanjava, was formerly also used for money, and at times moon and month are called by the older terms vola and volaña. Like the moon at its height, coins made of silver are round and shiny. Like the moon they appear and disappear. Like the moon they cycle, but ultimately remain permanent, singular, and unexchangeable, the standard of value. In sum, there is a thick chain of association between the moon and the months on one hand and coins, precious metal, royalty, immutability, perdurance, speech, truth, and ultimate value on the other.19 It is not just any coin that is placed in the mouth of the royal corpse or emerges from the mouth of the spirit medium, not just any coin that rests in the dish in the tomb or the dish on the medium’s altar. The coin must be made with a significant portion of silver, and it must be of a kind known as tsangan’olo. It has long been a practice for Malagasy to refer to coins by name rather than by denomination. This made eminent economic sense during the long mercantile period in which coins of many currencies circulated— Dutch, Portuguese, British, American, French, and Indian, among others—whose relative values presumably fluctuated. Better to consider the size and material of the coin than the number engraved on its face, better to name it for a feature of the image

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engraved on it. To follow Keith Hart (1986), in the absence of a single standardized, authorized currency or stable exchange rate, the heads of the coins were more salient than the tails. The tsangan’olo are French coins, but ones that precisely do not simply contain a “head” on their face but rather three full standing persons. In fact, this image has been on French coins of different but high denominations and under different republics since it was first designed; for Sakalava these are equivalent so long as they have the same engraved image. Tsangan’olo means “standing persons,” and here it signifies the rising of dead royalty as spirits who possess the living, but equally their encapsulation in and as a certain kind of materiality. The verticality of the standing position is found is a variety of other forms as well: the salience of standing trees (Feeley-Harnik 1991), the sharpened wooden posts that enclose ancestral spaces, the erection of posts or stones for commemorative purposes, the funerary statuary of the southern Sakalava, the very tall tree trunk that is erected in the royal ritual known as tsangan’saigny (“erection of the flag,” but saigny also means “mind” or “collective will”) of the related Antankaraña to the north (Lambek and Walsh 1997), and so forth. Ultimately the vertically erect figure symbolizes the interconnection of durability, renewal, and growth, as well as the potentiality for action—in a word, life.20 I have discussed the coins at length elsewhere.21 While the standing figures on the tsangan’olo are originally those of liberty, equality, and fraternity from the French Revolution, replacing the (decapitated) heads of individual French monarchs, among Sakalava they have come, on the contrary, to stand (and stand up!) for the power of royalty. This inversion is a kind of irony of history. The coins are, I have claimed, a fetish of the hierarchy entailed in royalty and the wealth and power produced through the former trade in living people (who could also serve as sacrificial victims). However, that significance is far from the current understanding of the coins. The coins are kept in the dishes of the mediums, as stores of sacred power (hasina) through which speech, potency, and purification can be conferred. Additionally, there is the habit of certain mediums, especially mediums of the diviner spirit Ndramisara (said to have set up the terms of the monarchy) and mediums who hail from the northern city of Antsiranana (Diego Suarez), to wear a tsangan’olo on a chain around their neck, the figures on the “head” of the coin always displayed outward on their chest, almost as though the figures were the Sakalava equivalent of the standing figure of Jesus on the cross. The crucifix, too, let us recall, is a potent, vertical, and visible sign of life in death, resurrection, and the movement between death and life. And the chest on which it rests is the source of respiration, the seat of the soul. Although spirits are not regularly fully present in overt possession of their mediums, they are a permanent presence in the lives of the mediums, who are affected by that presence—rendered at once more powerful, but also in greater danger. Danger comes from angering the spirit, and that anger is most often produced by inadvertently evoking the death of the historical person the spirit was. In other words, the medium is vulnerable also to the circumstances and pollution of death, especially as mediums threaten somehow to pull the spirits in their half-life toward death in its fullness, to remind them that

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they are, in fact, dead. While living with and sometimes as the reanimated monarch, the medium must avoid everything that had to do with the monarch’s original de-animation. Because Sakalava frequently attribute death to poisoning, so the medium must avoid all foods the monarch ate on the last day of life, foods whose ingestion may have contributed to the death. The medium has to pay special attention on the day of the week on which the monarch died, a day on which not only can the spirit not rise in the medium but the medium must not be reminded of the monarch’s story on pain of illness. I have frequently made the mistake of trying to talk to a medium about his or her spirit on days when the medium cannot talk. In the case of a very powerful and dangerous spirit, it may never be possible for the medium to speak directly about the monarch’s demise. The division of the deceased monarch into inanimate but hard and enduring bodily remains and animate mobile spirit—half-death and half-life, respectively—is replicated in the division of labor between the tomb guardian and the spirit medium. Each former monarch is assigned a guardian who lives at the settlement adjacent to the cemetery and oversees a house there constructed by the mediums of that spirit and home for them when they visit the cemetery. A given ancestor can appear in many mediums but will have only one guardian, permanently assigned to his or her tomb. The guardian, who comes from a class of former slaves or a specialized kind of “ancestor person,” can deal with the polluting elements of death without harm.22 It is only the guardians who can enter the tombs to rewrap the bones in new shrouds purchased through the energies of the mediums. Upon the death of any medium of the particular ancestor he tends, the guardian (who is always male) receives the tsangan’olo coin, clothing, and other paraphernalia of the spirit, rendered impure by these objects’ association with the death of the medium. In the guardian’s hands these are desanctified; guardians can wear the old clothing of royalty, and they—but only they—can resell the coins on the market (to a jeweler, who is usually of South Asian background and hence at arm’s length from the system), where they can be purchased and resanctified by a new medium.23 In this way, guardians are compensated for their work by the half-living ancestors. Coins thus circulate among mediums as spirits do, returning to their grave sites before reemerging. Both spirit mediums and tomb guardians have intimate relationships with the ancestors, but the intimacy is of a different kind and has different consequences in the two cases. When the spirits rise in their mediums, they can issue commands to their servants. To add to the complexity and intimacy, guardians are often married to mediums (who are frequently female) of one and the same royal ancestor. The spirits are neither fully living nor fully dead but move back and forth between death and life, or rather, half-life. They rise from their shrouds and tombs, dress, greet people, smoke, drink or eat, listen and speak—and then take their leave, some of them going directly under their shrouds, and return to their tombs. Often they emerge into presence showing the symptoms of their death, most dramatically in a prince (Ndranaverona) who choked to death, most poignantly and very powerfully in the queen (Ankanjovola, “blouse of silver”) who appears in the throes of childbirth that caused her demise.

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Their homes are in their tombs, their closest companions the other members of the clan buried in the particular cemetery where they reside. When they emerge into presence, spirits are focused or very brilliant, caricatures of the living person, caught forever in the circumstances of their dying and summarized in the key events of their life or death, compelling, charismatic, fierce or comic, intense and powerful, and for all that fleeting, in need of deference and care. The living keep up and renovate their tombs, watch over them, and ensure that the ancestors are not reminded of their deaths. Some mediums even provide material assistance to their living descendants. The mediums mind their taboos, purchase and keep their clothing, suffer their anger, and defer in the strongest way possible—giving way to them periodically, lending the dead their living bodies. At the same time they provide vivid evidence of the suffering and indeed the pathos of death.

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I now turn briefly to a different half-life, a half-world away, where the permeability rather than strict opposition of life and death is also found. In Switzerland if you visit the cemetery of a small village you are likely to find that the graves are not very old, dating back perhaps thirty years or maybe fifty, but no more. They are laid out close together, in neat rows, with engraved tombstones. Within the cemetery all the graves are likely to be well cared for, all with the same pattern, or perhaps one of several patterns, of planted flowers. The graves are tended by the municipal gardener, their upkeep paid for by taxes and perhaps additional fees provided by the families of the deceased. The cemetery is pretty in the Swiss way of things, neither baroque and ornate nor gloomy and magisterial. There is harmony of color and scale with the flower boxes hanging from the homes of the living. The flowers are symbols of life, perhaps also of ephemerality, temporality, and the cycling of all things, and, like Sakalava spirits, they are also fresh and colorful, intense with life. They demonstrate care for the dead and provide death and perhaps the dead with beauty, scent, and the very quality of blooming. However, this treatment of the dead in Switzerland is not permanent. There are no older graves or tombstones because every generation or so, when the coffins and bodies have been absorbed by the earth, the tombstones are returned to the families and the plots turned over to receive new bodies. It makes sense in a long-inhabited country with a shortage of surface space; if something were not done, the dead would surely crowd out the living.24 But if bodies do not have long lives, so to speak, if they return fully to earth within a generation or are matter-of-factly turned back into the earth, the same is not necessarily true of other parts of the person: the Geist (spirit) and the Seele (soul). Many Swiss would leave matters of the Seele to the church and to God and would refer to the Geist with respect to the secular life of the mind. Others would see things somewhat differently. Notably, a number of Swiss, though I do not know what proportion or how many, entertain

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the possibility of reincarnation. Many societies around the globe, from the Inuit to the Tibetans, entertain similar and often more elaborate, if not always historically related, propositions (Obeyesekere 2002). I mentioned earlier that Lévi-Strauss’s binary oppositions could be supplemented by recognition of incommensurability. Thus in Europe the binary opposition between mind and body—if indeed it is a simple dualism and not an incommensurable difference of its own—sits alongside a tripartite division of mind, body, and soul (Geist, Körper, Seele).25 These two models, the binary and the tripartite, are incommensurable with one another. So, too, are the Christian model of an afterlife and the non- but not anti-Christian model of reincarnation. If asked, many Europeans could probably not clarify the distinction between what transmigrates and what is subject to heavenly reception. Reincarnation is not the same as spirit possession, but there is an affinity. In Sakalava possession the predecessor remains half-alive in perpetuity, periodically entering into relationship with individual spirit mediums, who are each distinct human beings. The difference between spirit and spirit medium is important. In Swiss reincarnation the predecessor goes through a succession of lives and deaths as an ordinary human being. There is a quality of sameness, not difference, asserted between the person being reincarnated and the person who now identifies as the reincarnated predecessor. They are simultaneously individuated and merged. But both the Sakalava possessing spirit and the European reincarnated spirit are beings who do live beyond or outside death—and yet not in some entirely different transcendent world, nor in some unique state of hellfire or salvation, or even limbo, but, at least partly, here in this world, in the bodies of the living. Both spirit possession and reincarnation can be understood as forms of dividuality (Strathern 1988) or mimetic personhood (Lambek 2013), but a major difference is that in Malagasy spirit possession the dividuality is played out in public ways and through multiple social relationships: each medium has relationships with other mediums possessed by the same or closely related spirits, and with guardians, shrine officials, living royalty, and clients; likewise each spirit with historically related spirits, guardians and mediums, clients, and living descendants. In reincarnation the past and present person are condensed, and in Switzerland (as opposed to manifestations among Inuit or Tibetans) the relationship is quite private. The dead person infuses and subsists in the subjectivity of the living person and perhaps through the latter’s narrative accounts, but not in fully realized social relationships or other objectifications. Specific instances of reincarnation are not publicly authorized and indeed would then likely be rejected by Christianity or science. As it developed in Europe, science became the study of the material world. The origins and development of science entailed thereby a divorce of matter from spirit. The spirit was left to religion, philosophy, and then the rest of the humanities, or was successively rematerialized as mind, memory, and brain. But at their historical roots matter and spirit were not understood as opposed or incommensurable, and another tradition survived alongside

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science, developing in parallel but also always in relation and response to it. Today in North America this is referred to as New Age, but the Swiss practitioners I spoke with strongly rejected this epithet, pointing to the antiquity of their traditions. In Switzerland (and elsewhere in Europe) the tradition has been refracted in what became a number of distinct disciplines (that then influenced each other), including homeopathy, anthroposophy, and Jungian analysis. Outside these institutional structures, ideas and practices flow and percolate and need not belong specifically to one tradition. Indeed they draw on elements of Mediterranean esotericism, ostensibly from ancient Egypt, from pre-Christian European traditions, and from Asian ideas brought to Europe in movements like theosophy and, more recently, TCM (“traditional Chinese medicine”). There are also ideas of electromagnetism and of healing by means of secretly transmitted Christian prayers. Many Swiss draw on a selection of such ideas and practices as well as on scientific medicine (Schulmedizin) and Christianity, in a kind of heteropraxy not so different from the way people in Mayotte drew upon a practical balance of Islam, cosmology, and spirit possession (Lambek 1993). The lesson perhaps is that no one single system seems adequate to fully (consistently and completely) address existential questions and practical dilemmas, such as illness and death.26 Today one can find in Switzerland both medical practitioners and pharmacies that specialize in only one tradition and others that explicitly combine more than one. One of the oldest traditions is alchemy, associated with Paracelsus, a monk who was born in Switzerland in 1493 and resided in Switzerland at certain times during his peripatetic life. He was enormously influential for a time, before chemistry and pharmacy became distinct sciences (the latter, in particular, becoming a dominant industry in Switzerland), and has regained popularity in certain circles today. At the basis of alchemy (Spagyric) as propounded in the name of Paracelsus today is the transposition of matter from one kind to another via the distillation to its essence or spirit. Paracelsus used this approach in medical treatment and perhaps (ostensibly) to produce gold, but no doubt, as a Christian monk, he did not apply it to dead bodies. However, there is evidently an elective affinity, if not more, between the ideas of alchemy and reincarnation. In alchemy, matter does not disappear permanently; it is only transformed. Distilled to its spiritual essence through death, the soul can then remanifest in new and different bodies. Such a model was reinforced in the past century through the influence of Indian philosophy and mysticism, most evident in the development of anthroposophy, which acknowledges reincarnation.27 Of course, I am not saying that these ideas are characteristic of all Swiss or even the majority. While they could be read as an alternative to Christianity (for some practitioners that difference is critical, while for others there is synthesis),28 the ideas and practices are more salient in their relation to science or medicine as a kind of para-science or alternative medicine. Refusing to defer to the authority or hegemony of established science and medicine, albeit mimetically drawing upon them, these practices offer a kind of popular science and medicine. But the difference is quite radical if one considers them an alternative to materialism. It is in this respect that they relate to reincarnation.

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So the questions are: What ceases to be? What is irretrievably gone, absent, missing, no more? And what is it that remains? Or what is it that is transformed by the (natural) fact of death and what is it that is retrieved or reanimated by the (cultural) acts of living people in the face of death? What are the units that live and die, or through which life moves? What passes between the generations as our parents and predecessors animate us and as we shall animate our successors (or vice versa)?29 Or can and do we in fact perceive and comprehend radical disappearance, sharp separation, pure absence, nothingness? As anthropologists look around, with the particular kind of gaze we have, we see everywhere signs of afterlives and practices of transformation. In China, the statues of gods are animated upon their installation in temples and Mao remains undecayed in body in Tiananmen Square, iconized on the “head” side of all circulating paper money, and residing deeply and ambivalently in memory among his contemporaries and their offspring.30 If one mediation is to think of humans resurrected in some kind of paradise or other transcendent space (hell, a distant island) or waiting in limbo to be assigned a new location, another is to see the dead or some part of the dead, the part that is not precisely dead or that precisely is not dead, as still here among us. Thinking of and with the Malagasy material, I call this kind of afterlife a sublunary one. The sublunary is a half-life, visible by reflection, like the moon, but it is also here on earth, under the moon, and bearing some kind of materiality. Sublunary creatures are multiple and often incommensurable with one another, not strictly definable by means of binary criteria, assignable within taxa, or distributable along clear intersecting semantic axes; they could include ghosts and ancestors, individual persons and collective abstractions, material relics or portraits, biographies, and reputations. Photographs, in fact, are reflected emanations of light in much the way I have described the moon.31 Sublunary creatures could include Malagasy royal ancestors who possess the living and historical figures who reincarnate as contemporary citizens of Switzerland. They invite us to think about the historical ontology (Hacking 2002) of bodies and souls, and matter and spirit, and perhaps to rethink opposed states of life and death as connected processes of animation, de-animation, and reanimation.

POSTSCRIPT

At presentations of this talk I have been unsatisfied by my inability to address the responses it has elicited.32 To return to the introduction, death is at once all too well known and completely unknown. While it inserts itself continually as one half of a binary opposition— death and life, before death and after death, and so on—it is equally imagined in other ways: as part of a circulation or flow of what could be called soul, life force, spirit, energy, or animation. There is no conclusive knowledge about death to report, certainly no conclusive knowledge that is satisfying or welcome. So in reading this, you have used an hour of your time in order for me to tell you what you cannot not already have known.

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N OT E S

Research has been generously supported by the Canada Research Chair at the University of Toronto Scarborough and the Social Sciences and Humanities Research Council of Canada. Thanks to Veena Das, Nicholas Evans, Elisabeth Hsu, Shao Jing, Jonathan Mair, Piers Vitebsky, Robert Weller, Der-Ruey Yang, and other colleagues and students at the Anthropology Institute, Nanjing University; at King’s College, Cambridge; the Institute for Social and Cultural Anthropology, Oxford; the Graduate Student Conference at the Department of Religion, Columbia University; and the Centre of Ethnography, University of Toronto Scarborough, for penetrating responses. I offered this paper at Cambridge in memory of Malcolm Ruel and in New York in memory of Helen Tartar. 1. The thought continues: “Yet we are shown repeatedly in the [Wittgenstein’s Philosophical] Investigations that one cannot tell another something unless it is news to that other. It follows that philosophy takes place before or after we tell things to each other, in art or in rumor or in confidence or as information. So what moves philosophy to speak?” The title of Cavell’s great memoir appears to approach knowing from a slightly different angle. 2. The literature on mortuary practices, ghosts, and ancestors is enormous, indexing how important each of these things have been, not only for anthropologists but in human ways of life. 3. It has been suggested that one-celled organisms may be in effect immortal. 4. “To be or not to be.” On the centrality of the verb to be in Hamlet, see the very interesting discussion by Freddie Rokem (2010). 5. This is not to deny that we have the experience of the death of others, sometimes right in front of us. 6. Moreover, I cannot see a reason to single out death from all the other anxieties that best us. 7. To be clear, I am not asserting that it is not primary. I am constructing an ethnographic thought experiment. However, compare Descola 2013. 8. The ethical issues concern the fact that reanimation of one organism may entail deanimation of another. 9. In some circles this category error is known as vitalism. 10. The latter is addressed by a vast literature since Frazer (1922). For a good overview, see Feeley-Harnik 1985, and for a more recent careful historical-ethnographic analysis of an individual case, see Vaughan 2008. 11. Or rather, the afterlife—and death—are beside the point. 12. This implies hierarchy of value, and of lives. 13. I develop these points with respect to enactments in general in Lambek 2010. 14. These remarks are all based on informal observation, not statistics, though some points, like the prevalence of malaria and the absence of land mines, are unquestionable. 15. For powerful accounts of burial practices, see especially Bloch 1971, Feeley-Harnik 1991, Huntington and Metcalf 1991, and Middleton 1999. 16. “Les vivants et les morts d’un même lignage sont des contemporains.” 17. I have not heard the story recounted myself, but Sarah Gould did, and it was recorded by Dandouau (1922). Eva Keller (2008) has also found it on the northeast coast. I am indebted to Sarah Gould for drawing my attention to the story in an unpublished paper.

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18. For an extended discussion of these points, as well as those in the next paragraph, see Lambek 2002. 19. The coins can be likened to what Rappaport (1999) calls ultimate sacred postulates and which he sees as the core of religious systems. 20. One could make connections to circumcision and of course the phallus, though the latter is not an explicit association. 21. Many of the points in this section have been extensively developed in Lambek 2001. 22. It is another kind of “ancestor person” who deals with the pollution of preparing royal corpses for burial and who, in the past, could serve as a sacrifice. 23. In 2012 I saw tsangan’olo dating from 1850 for sale from a street vendor at the big market for 350,000 Malagasy ariary (about thirty-five dollars)—a great deal of money locally. 24. Elisabeth Hsu (personal communication) has pointed out that some people get around this by building family tombs. 25. The fact that that I have not always been able to clarify a consistent distinction between Seele (soul) and Geist (spirit) is possibly due not only to insufficient fieldwork but because the very ambiguity or incommensurability between the terms soul and spirit, and between both terms and body (Körper), is necessary in order to retain other ideas alongside and in no direct opposition to or confrontation with Christianity or science. 26. This is, of course, an extension of the argument of Evans-Prichard (1937). 27. The influence has not been entirely one-way. Homeopathic medicine, which was a development from alchemy insofar as it is also based on the reduction of the material toward its nonmaterial essence, has had enormous success in India. 28. See, for example, the book compiled by a group of Catholic anthroposophists (Branche Nicolas de Flue, de Fribourg 1994). 29. What passes between the generations includes half the genetic substance of each parent (so in genetic transmission, there is half life and half death . . .), mimetic replication or resemblance, and memory. Thanks to interlocutors in Nanjing for pointing this out. 30. With thanks to Shao Jing. 31. My thanks to Katie Kilroy-Marac for this point. 32. Questions and comments have addressed such issues as abortion and organ transplantation.

REFERENCES

Astuti, Rita. 2007. “What Happens after Death?” In Questions of Anthropology, London School of Economics Monographs, edited by Rita Astuti, Johnny Parry, and Charles Stafford, 222–47. Oxford: Berg. ———. 2011. “Death, Ancestors and the Living Dead: Learning without Teaching in Madagascar.” In Children’s Understanding of Death: From Biological to Supernatural Conceptions, edited by Victoria Talwar, Paul Harris, and Michael Schleifer, 1–18. New York: Cambridge University Press. Astuti, Rita, and Maurice Bloch. 2014. “Are Ancestors Dead?” In A Companion to the Anthropology of Religion, edited by Janice Boddy and Michael Lambek, 103–17. Boston: Wiley-Blackwell.

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Bloch, Maurice. 1971. Placing the Dead: Tombs, Ancestral Villages and Kinship Organization in Madagascar. London: Seminar Press. ———. 1992. Prey into Hunter. Cambridge: Cambridge University Press. Boylston, Tom. 2014. “Food, Life, and Material Religion in Ethiopian Orthodox Christianity.” In A Companion to the Anthropology of Religion, edited by Janice Boddy and Michael Lambek, 257–73. Boston: Wiley-Blackwell. Branche Nicolas de Flue, de Fribourg. 1994. La Métamorphose de la Suisse: Les arrièreplans spirituels de la mission de la Confédération. Geneva: Editions Anthroposophiques Romandes. Carsten, Janet. 2014. “The Stuff of Life: Mysteries of Blood and Connection from Malaysian Clinical Pathology Labs.” Lecture delivered at the University of Toronto, Scarborough, Ontario, March 3. Cavell, Stanley. 2010. Little Did I Know. Palo Alto, CA: Stanford University Press. Dandouau, André. 1922. Contes populaires des Sakalava et des Tsimihety de la région d’Analalava. Algiers: Jules Carbonel. Descola, Philippe, 2013. Beyond Nature and Culture. Chicago: University of Chicago Press. Evans-Pritchard, E. E. 1937. Witchcraft, Oracles and Magic among the Azande. Oxford: Clarendon. Feeley-Harnik, Gillian. 1985. “Issues in Divine Kingship.” Annual Review of Anthropology 14:273–313. ———. 1991. A Green Estate. Washington: Smithsonian Institution Press. Frazer, Sir James G. 1922. The Golden Bough: A Study in Magic and Religion. Abridged ed. London: Macmillan. Goedefroit, Sophie, and Jacques Lombard. 2007. Andolo: L’art funéraire Sakalava à Madagascar. Paris: Biro Editeur—Coédition Institut de Recherche pour le Développement. Hacking, Ian. 2002. Historical Ontology. Cambridge, MA: Harvard University Press. Hart, Keith. 1986. “Heads or Tails? Two Sides of the Coin.” Man 21 (4): 637–56. Houtman, Dick, and Birgit Meyer, eds. 2012. Things: Religion and the Question of Materiality. New York: Fordham University Press. Huntington, Richard, and Peter Metcalf. 1991. Celebrations of Death: The Anthropology of Mortuary Ritual. Cambridge: Cambridge University Press. Keller, Eva. 2008. “The Banana Plant and the Moon: Conservation and the Malagasy Ethos of Life in Masoala, Madagascar.” American Ethnologist 35 (4): 650–64. Lambek, Michael. 1993. Knowledge and Practice in Mayotte: Local Discourses of Islam, Sorcery, and Spirit Possession. Toronto: University of Toronto Press. ———. 2001. “The Value of Coins in a Sakalava Polity: Money, Death, and Historicity in Mahajanga, Madagascar.” Comparative Studies in Society and History 43 (4): 735–62. ———. 2002. The Weight of the Past: Living with History in Mahajanga, Madagascar. New York: Palgrave Macmillan. ———. 2007. “Sacrifice and the Problem of Beginning: Reflections from Sakalava Mythopraxis.” Journal of the Royal Anthropological Institute 13 (1): 19–38. ———. 2008. “Value and Virtue.” Anthropological Theory 8 (2): 133–57. ———. 2013. “The Continuous and Discontinuous Person: Two Dimensions of Ethical Life.” Journal of the Royal Anthropological Institute 19:837–58.

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Lambek, Michael, and Andrew Walsh. 1997. “The Imagined Community of the Antankaraña: Identity, History, and Ritual in Northern Madagascar.” Journal of Religion in Africa 27 (3): 308–33. Leach, Sir Edmund R. 2011. “Kingship and Divinity: The Unpublished Frazer Lecture, Oxford, 28 October 1982.” Hau: Journal of Ethnographic Theory 1 (1): 279–98. Lévi-Strauss, Claude. 1961. Structural Anthropology. Vol. 1. Translated by Claire Jacobson and Brooke Grundfest Schoepf. Garden City, NY: Doubleday. Lienhardt, Godfrey. 1970. Divinity and Experience. Oxford: Clarendon Press. Lock, Margaret. 2002. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press. Middleton, Karen. 1999. Ancestors, Power and History in Madagascar. Leiden: Brill. Obeyesekere, Gananath. 2002. Imagining Karma: Ethical Transformation in Amerindian, Buddhist, and Greek Rebirth. Berkeley: University of California Press. Parry, Jonathan. 1994. Death in Banaras. Cambridge: Cambridge University Press. Rappaport, Roy. 1999. Ritual and Religion in the Making of Humanity. Cambridge: Cambridge University Press. Rokem, Freddie, 2010. Philosophers and Thespians: Thinking Performance. Stanford, CA: Stanford University Press. Ruel, Malcolm. 1990. “Non-sacrificial Ritual Killing.” Man 25:323–35. ———. 1997. Belief, Ritual and the Securing of Life: Reflexive Essays on a Bantu Religion. Leiden: Brill. Strathern, Marilyn. 1988. The Gender of the Gift. Berkeley: University of California Press. Vaughan, Megan. 2008. “ ‘Divine Kings’: Sex, Death and Anthropology in Inter-war East/ Central Africa.” Journal of African History 49:383–401.

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36 A GOOD DEATH, RECORDED Robert Desjarlais

Many deaths in the world are quite normal, in the sense that people die in familiar circumstances, unmarked by situations of violence or terror where normally available modalities of cessation, ritual, and mourning cannot be accessed.1 The manner and formations of such unexceptional deaths speak to the ways in which certain features of human existence—such as consciousness, identity, memory, desire, bodiliness, and relationality—are enacted and dissolved through a range of social and ritual practices. This is evident among the Yolmo people, an ethnically Tibetan Buddhist people from the Yolmo region of Nepal with whom I have conducted research during the past twenty-five years. For many Yolmo families, transformations recurrent in life contribute to how people make sense of dying, loss, and mourning. “The dead are attached to the living, and the living are attached to the dead” runs one Yolmo saying. The task of the living is to cut off the deceased from their world, to diminish that person’s attachment to that world, to the point of a zero-degree desire. The living, the dying, and the recently dead are thus engaged in delicate technologies of cessation and transformation. Life itself is generative, even within the burned-out shadow of death. Some combination of these themes was evident in the makings of a death that I came to know about in the course of conducting ethnographic fieldwork in Nepal in 2001. In August of that year, while living in the Boudhanath area of Kathmandu, I watched a video recording that documented the passing of an elderly man I will refer to as Sange’s father. The man cast on the screen was on the margins of death, and then beyond.

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Sange’s father was a well-respected head of a Yolmo family. Late in life, he had moved with his wife to Kathmandu, and they lived in a three-story house on the outskirts of Boudhanath. Sange’s family and his mother and father shared the second floor with an unmarried sister and aunt. In the mid-1990s Sange obtained a visa to travel to the United States. He arrived in New York City, and has lived and worked there since, phoning home often to speak with family. His wife joined him in New York in late 2001, after receiving a visa of her own, and she soon gave birth to their third daughter. In 2001, I lived for two months in a room on the second floor of this family’s house in Nepal. The father’s absence was noticeable in the house. It was evident in the quiet of conversation and the stillness of rooms. The father had died in 1999, after a lengthy illness. It was Sange’s niece Tshering, a young woman who lived on the top floor of the house, who alerted me to the video’s existence. When I asked Tshering if it would be possible for me to see this video, she said that would be fine, but noted that it was at her aunt’s house. “It will be good to watch it there,” she said. “Because when it’s shown among close family members, they cry. It’s difficult for them to watch it.” A few days later, early on a Saturday afternoon, my friend and then research assistant Temba Yolmo and I met Tshering at the home of her father’s sister, and the three of us watched the video together on a large color television set. We sat in a tidy room with family photographs on a mantel, thangka paintings on the walls, and a portrait of the Dalai Lama close to the altar. I felt uncomfortable, voyeuristic. I was watching the intimate visual record of the death of a man I had never met in life. Temba and Tshering appeared to be fine with the viewing, perhaps because they had seen videos of this sort, but also, perhaps, because they were more at ease with death than I was. They commented on the events playing out on the screen, and I took notes. The video contained a series of unedited segments, recorded on successive days. The first segments showed scenes of relatives and friends visiting to sit with the dying man in the home’s main room. The man sat, and rested, in his bed. He appeared gaunt and weak, with tired eyes. He looked at his guests when they spoke, and nodded at what they said. At times he contributed to the conversations in a faint, measured voice. His wife sat on the floor in the room amid a group of women. She was quiet, looking on, and listening to the conversations. In one scene of the video, the father, smiling, with his eldest son by his side, handed an envelope to another man, while others looked on approvingly. Temba told me that the son had given his father a significant amount of money, which he donated to a temple in the Yolmo region. Images followed of people visiting, and family members preparing food in the kitchen. The video then cut to a scene at night, when the man was dying. Several men talked quietly among themselves, in the room with him, as though to help him die peacefully. Soon after, a lama, a Buddhist priest, leaned over the man to check his breathing. He determined that he had died. He draped a white cloth over the body. People whispered and stepped silently about the room. “He looked quite alive, but also weak, and somewhat vacant,” I wrote in a notebook later that day. “What must it be like to know you’re dying, and these people have come

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because they know you’re dying? Later on he was lying down, then sitting up, then he was as though dead, and then he was dead. He was also talking a bit, at times. . . . He didn’t look especially sad or frightened. He knew what was happening, and he appeared to be accepting of it. There was a sunken look around his eyes, as though he had been sick for some time, and he was already on the margins of death.” A later segment of the video showed two Tibetan lamas performing a rite beside the body. People returned to the house on the day of the cremation, three days after the death. The final frames depicted the cremation rites and several funeral rites. Several weeks after watching the recording, I asked Sange’s wife, Pemba Dolma, if she would be willing to relate to me how her father-in-law had died. She agreed to this. Accompanied by Tshering, we sat together one afternoon and Pemba spoke in Nepali into a tape recorder. She told of how her father-in-law had gotten injured and went to several doctors for treatment for damage to “the internal parts” of his body. None of the treatments worked well, however, and his condition slowly worsened. Sange was living in New York City then, but he phoned home often, especially in the weeks preceding the death, to talk with his family. When it became clear that his father was to die soon, Sange considered flying from the States to Nepal to see and talk with him before he died. His father told him by phone that he should not come to Nepal, for if he did, it would be difficult for him to return to the States, and there were few good jobs to be found in Kathmandu. “The father knew that he was going to die,” a friend later told me. “And he himself said to Sange, ‘Don’t come. Don’t come. Once you come back, you’ll have a hard time getting back to America. You’ve tried so hard to get there, just to have the chance to be there. And we’ll talk over the phone.’ ” Sange agreed to this. But he also asked his family to prepare a video of his father’s passing and the cremation and funeral rites that followed. That way, he could behold his father one last time and he could participate, from afar, in his death. Pemba spoke of the final days: Many people used to visit our house to see my father-in-law. When they did so, he would sit with them and say to them, “Now, as it is my age to die, so I have to die. But don’t be upset or sad.” He was not afraid even of his death. He was satisfied because all of his sons had work of their own, and they all are responsible and can look after their families. All of these thoughts made him relaxed and satisfied. He became sure of his death, so he called all his sons, one of whom was in India, and another who was in America. The eldest one was in Nepal itself. He asked one of the sons, who was in India, to come back as early as he could, because now he was about to die.

And Pemba told of the final hours: A few male relatives were staying here to look after him. I gave soup to him and after taking my dinner I went to sleep. His wife was in his room, looking after him.

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Suddenly he put his rosary down on the table. It made a loud noise. He never put his rosary down like that, but when his wife asked him what had happened, he told her that he wanted to go to the toilet. Then she called a few men to take him to the toilet. After they took him there, they set him on the bed, and he fell unconscious, without any pain. After that we called the lamas, and they did a pūjā [ritual].

Others spoke of how Sange’s father died a peaceful death, without fear, and with little longing for the life he was leaving behind. He knew he was dying, but he was at ease with that fact. “When I saw him in those days, I saw that he was very confident,” Pemba’s brother Karma, a good friend of mine, told me. “He didn’t appear nervous about it,” he continued. “ ‘Who knows? Tomorrow, or the day after, my breath will go.’ That’s what he was saying, calmly. We felt uncomfortable, but he did not.” “He wasn’t afraid at all,” I proposed. “No, he wasn’t. Not at all. He wanted to hear the ‘Liberation upon Hearing in the Between,’ because he knew that the time was near.2 And my brother Sonam was there, explaining everything. He [my father] even stopped his son from coming from America.” “To me,” I said, “in seeing him on the video, it was like he was going on a trip, and he was saying good-bye to people.” “Yes, to him it was just like that,” Karma answered. “To him it was just like he wasn’t going to see these people anymore.” “Is it usually like that, or was that exceptional?” “Not everyone is like that. In his case, I don’t think he was in so much pain. And some people are in a lot of pain, and that’s a totally different situation.” Sange’s father, certain of his death, prepared for it. Content that it was his time, he was spiritually engaged until the end, his family beside him and his desires fulfilled. He died at home without fear, regret, or longing for the world.

THE MAKING OF UNMAKING

Yolmo Buddhists are often concerned with a good death, one that helps them to achieve liberation or a good rebirth. Undertaking a quiet apprenticeship on the matter, they often adopt a number of techniques that help them to die well, from preparing for their deaths, to giving a last testament in their final days, to forging a calm and peaceful state of mind in the hours of their demise. Family and friends often help in these endeavors. They try to calm and support the fading loved one, help him to sever his attachments to his life, exchange final words and glances, and accompany him in the process of dying, up to the “mouth” of death itself. As Yolmo people envision it, after a person dies, his consciousness departs from his body and enters into a phantasmagoric liminal realm between one life and the next, known as the bardo. This “between” can last up to forty-nine days after the death—until the consciousness moves into a new life-form and is subsequently reborn

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in that life, or it achieves nirvana altogether and steps out of the samsaric cycle of worldly, karmic existence. While in the bardo between, the consciousness is bereft of a tangible body. That spectral subject lacks the capacity for personal action, while needing to find the right route to a good rebirth.3 He must depend on the aid of the living, who should perform a number of rituals on his behalf. Mourners render the deceased no longer a living, fully human, flesh-and-body person. If the funeral rites go well, the personhood of the deceased fades in time. His persona becomes increasingly nameless, apersonal, and distant from the world of the living. Family members sponsor and participate in these rituals in a spirit of care and responsibility while often attending to wounding grief, which diminishes but never fully expires in time. Dying calls for an active patterning of self and other, as do the funerary rites. An element of poiesis courses through Yolmo responses to death. There is a creative making, a generative fashioning of sense and consciousness, that serves to aid the deceased’s plight, while tending to the ache of grief and longing. Poiesis implies a begetting, a fabrication and bringing forth, of some new form or reality; something that was not present is made present. The concept first took form in Greek philosophy, most significantly in the writings of Plato and Aristotle. It has subsequently been adopted by modern philosophers such as Martin Heidegger (1982) and Hannah Arendt (1958), as well as some anthropologists (Lambek [2008], Stewart [2005]). Taken from the Greek poiein, “to act, to do, or to make,” and related to the words poetics and poetry, the term poiesis has come to designate any making or doing beyond purely practical efforts. Poiesis is involved in the crafting of poems and in the art of shipbuilding. Ideas of poiesis skirt dichotomies problematically common to Western thought, such as art and deed, virtuality and actuality, and idea and matter (Lambek 2002, 15–16). Imaginative visualizations are as much a matter of poiesis as religious statues. Such begetting is central to procedures of dying, death, and mourning in Yolmo communities. Consciousness is transformed, ceremonies performed, substitute bodies made and unmade, and memories revised—all in ways that entail techniques of fabricating, bringing forth, and transmutation. The concept of poiesis developed here is an attempt to redescribe certain processes of subjectivity, social life, and cultural form, particularly as they occur in situations of death and mourning. Our aim is not so much to apply Western concepts of poiesis to Yolmo lives as it is to grasp how Buddhist orientations to generative fashioning and creative subtraction shed light on processes at work in all of our lives. A strong inclination toward creative fashioning recurs in many domains of life in Yolmo communities, from the inventive industriousness often displayed by individuals and families, to the “skilled means” employed by Buddhist adepts, to the diligent attempts to generate positive karmic merit for oneself and others. The focus on self-transformation central to Tibetan Buddhist religious practices similarly involves motifs of overt and active fashioning (Gyatso 2002). The idea of poiesis in life and death accords well with Yolmo ways of thinking of, and engaging in, the world. I have often consulted with

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Karma Gyalsten Yolmo in my efforts to write anthropologically about Yolmo lives and life more generally. When I introduced to him the idea of relating Yolmo lives and deaths to the concept of poiesis, he immediately warmed to the idea and its implications, and he grasped, more than I did then, its pervasive relevance for Yolmo lives. “It fits into so much of what Yolmo people are concerned with,” Karma said. “There is a focus on creating things in a more beautiful way. Fashioning—that’s a good word. . . . So much is about composing and creating.” While ideas and doings of poiesis are central to many Yolmo lives, they involve only one particular cultural rendering of something at work in the lives of peoples throughout the world. Poiesis is found in the strivings of all peoples—and, perhaps, of all life forms more generally. Poiesis is there in the urge people have to make something of, and in, their lives, both individually and collectively. It ties in to Spinoza’s (1985) idea that “[e]ach thing, as far as it can by its own power, strives to persevere in its being,” and it has resonance with Gilles Deleuze’s philosophy of becoming (2001). It echoes Kathleen Stewart’s considerations of “cultural poesis,” which she richly locates in “the generativity of emergent things” (2005). And it parallels a theme in Michael D. Jackson’s writings on the generative capacities of human beings (2005, 2011). There is a creative tendency in life itself. Poiesis is found in moments of joy and suffering, and of life and death. It is inscribed in the very fact of rituals. Something is made present when something else is no longer present. The catch to all of this is that those weavings often run up against the strivings of others similarly intent on making something of their lives. We all know of moments of counterpoiesis: a boy at play crosses creations with a man at play. Or, more harshly, our efforts hit up against the world at large, blind and inert to human strivings: a man respected by his community for his inspired, generative contributions to their lives falls ill of a sudden fever, and dies. A “coefficient of resistance” is involved in any human strivings in life, to use a term of Sartre’s (1963, xii). People create and fashion, most often, within situations of struggle, denial, want, and the wastages of time. There is a recurrent tension between what people aspire to in their lives and the forces that shape and constrain those lives. One significant way that this tension takes form in Yolmo lives ties in to ideas of karma. Karma involves a kind of natural poiesis, in that a person’s deeds, positive and negative, bear “fruit” down the road. It is a matter of karmic “cause and effect,” wherein a person reaps what he has sown, even if that sowing occurred in previous lifetimes of his. Karmic forces bring forth certain situations, be they a stretch of happiness or a lifetime of hardship, and there’s not much that a person can do to change that. He or she can, however, strive to generate positive karma, by undertaking virtuous deeds and “cutting” negative ones. Many a Yolmo life—and death—is founded on an intricate play between the generative designs of karma in a person’s life and that person’s attempts to steer the consequential flow of karmic actions. While a person might strive for a good death, for instance, he and others know well that his karmic heritage will play a large role

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in the ease or suffering of that death. Two types of deaths are consistently in play in Yolmo lives: the death that a person anticipates and prepares for, and the death that actually occurs. It’s a matter of what is karmically “written on the forehead,” as many phrase it, and what a person endeavors to contribute to what is, or can be, written. Poiesis can assume many forms. Among them are inclinations, in no particular or purely distinct or finite order, to do the following:

. . . . . . . . . . . .

To make new things, more or less concrete or virtual To alter or fashion the appearances of the world To shape or change the consciousness of someone or something To sense or perceive the world in a particular way To shape memories To change the form of someone or something To teach someone something significant or lasting To create relations between forces in the world To alter the ways in which relations take form or proceed To bring forth something previously dormant, hidden, or germinating To play with the forms and formations of life To unmake something; to dissolve something or take it apart

Each of these efforts plays a central role in how Yolmo peoples go about their lives, as well as how they tend to moments of death and loss. Rituals are performed. Consciousnesses and memories are fashioned and refashioned. Selves are made. And selves are unmade. The procedures of dying and death often entail a poiesis of cessation, in the seemingly paradoxical sense that a dying self endeavors to dissolve its self. As was the case with Sange’s father, there is often a gentle art to dying. Dying often emerges as an active, conscious project in life, as an action to be undertaken. A person strives, often with the help of others, to create the conditions whereby she can contribute to the creative subtraction of her place within the world. Many strive to craft appropriate states of mind while dying. They try to dissolve their attachments to the world, visualize the forms of Buddhist deities, and contemplate the impermanent nature of all life. Through these efforts, a person can maintain some control over the dying process and be conscious of his or her passing. Mourners, in turn, try to facilitate these endeavors on behalf of lost loved ones, while trying to abate their own attachments to them. Much of the dying process and the cremation and funeral rites orbits around an intricate making of unmaking, a calm forging of undoing, dissolving, and stillness. Attachments are diminished, sensory engagements extinguished, and the now-gone one is resolved of his worldly existence. In many respects, these efforts fit well with the intent of Buddhist teachings and practices, which tirelessly work toward the idea of letting go of ego, attachments, sensory dependencies,

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and the sense of a solid and unchanging self in the world. Dissolving, taking away, releasing, removing, until all is emptiness, until the self itself is stilled: these hard-gained endeavors apply both to Buddhist practices and to Yolmo methods of dying and postlife transformations. In thinking of how people engage constructively in the world, we need to entertain Buddhist ideas of “taking away” and consequential “nondoing” as much as we do Western philosophical ideas of poiesis as entailing a directly active “bringing forth.” Stable ideas of active and passive break down here. At the same time, poiesis here implies a tentative making and fashioning, one couched in the virtuality and impermanence of its own constructedness. Given that people usually do not engage in these efforts on their own, it’s clear that much of the “bringing forth” that takes place in situations of dying and death, as in those of life, have a decidedly social cast to them. Most often what is involved is a kind of copoiesis, of a collaborative fashioning and unfashioning of self and other, as well as of a poiesis-on-behalf-of-another. What people often bring forth, or dissolve, is on behalf of others. This is particularly crucial after a person dies, since the dead can accomplish little on their own as they roam a “land without power,” a domain where they no longer have powers to act. They cannot effectively “act” or “produce” anymore or alter their karmic heritage in any forthright way. They must rely on the living to do this. The ritual assistance is a welcome responsibility, since the living long to act in ways that can benefit lost loved ones. These efforts at the cooperative enactment of assisted cessation trip up prevalent ideas of agency in Western social and political thought, which often paint “personal agency” as being a question of actions undertaken by individuals, often while under the constraining weight of political forces. The designs most in circuit here involve social and ritual practices whose effects are to transform people or situations in some way. The actualities and virtualities generated in these moments are in line with a world familiar with tantric energies and transformative intensities. They proceed without any single author or known agent. They have powerful effects in and on life. There is a singularity to many deaths. Something in the way the details of a death unfold makes them stand apart from the typicality of cultural discourses and representations or any general story one might want to tell about how women and men die. Dying unsettles the same, the familiar, the expected—much as life does, when it comes down to it. It’s also true that death is cultural, that dying and cessation take on particular forms in distinct social and historical settings. Certain “dying scripts” (Green 2008, 11) are often at work in such settings. Most Yolmo people desire to die as Sange’s father did—in their homes, among loved ones. The dying should be at ease, surrounded by family members, relatives, and friends, without fear or longing, prepared to die. While many say it’s best to die while sleeping, with an absence of awareness, others, especially those familiar with Buddhist principles, find it’s important to die while awake and conscious of one’s death. In that way, a person can say good-bye to loved ones on good terms and embrace new situations to come.

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Others are not so fortunate. Hospitals present bad places in which to die. For most Yolmo people they are an unpleasant scene of medical instruments, tubes, infections, contagions, unfamiliar protocols, and operations that go well or poorly. They can be costly in the long run and far from home. It’s difficult for many family members to stay with a hospitalized person for long stretches of time, hashing a situation where a person might die alone or with only one or two acquaintances nearby. “When we see on television a person dying in a hospital alone,” Karma told me, “we say that it’s a very bad death. ‘What bad karma,’ we say. ‘Not even a chance to say good-bye.’ ” Hospitals are known as spiritually impure places. The fact that many different people, including many who might be spiritually impure, have died within their confines, perhaps in the same bed to which “one’s own” would be assigned, makes them a place of impurity (dhip). Such “death impurity” can further harm and weaken a person, as well as contaminate her body or consciousness if she does die. Due to this, many resist being taken to a hospital if it looks like they might die there. In recent years a few people living in the United States who have been gravely injured have been cared for in hospitals. They have been kept alive, while in comas, with the aid of life-support systems, attended to by family members. “That is very sad,” a friend named Nogapu Sherpa said in speaking of these situations while conversing with me in his home in Boudhanath one evening. “If a person like this had died by now, he would have already come back [been reborn]. That kind of thing is difficult for everyone. If something like this happens in Nepal, the person would die soon after getting injured. They don’t have those kinds of machines here.” Unable to die, a person is stuck between lives. The tempo of a good death is obstructed. The person is also situated between two technologies of death: the Buddhist practices his family knew best, and the biomedical procedures of a big city hospital. Once those procedures embrace an unconscious body they establish a situation often found today in American hospitals—“a prolonged hovering at the threshold between life and death,” as anthropologist Sharon Kaufman (2006) has observed. “Instead of death,” Kaufman notes, “the hospital opens up an indefinite period of waiting during which patients do not cross that threshold until it is decided when it is time for them to die” (4). Like others in hospitals sustained through ventilators and additional life-support systems, the person enters a “zone of indistinction”—biologically alive, though only because he is “sustained by biomedical technology, and without signs of unique, purposeful life” (98). Situations such as these throw Yolmo families up against forms of the “new death” taking hold in many societies (Lock 2002). These emergent, technologically mediated ways of dying configure death as occurring not as it will appear “naturally” but “delayed, managed, and timed” (Green 2008, 47). The medical technologies continue to such an interminable point that they beg the question, painfully felt, of whether or not a person whose body is sustained in such a way is still vitally alive. The gamut of biomedical interventions often applied in hospital settings to prevent a person from dying often stand in stark contrast to forms of dying in the Yolmo region, where there is more a sense of calm,

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compassionate, and patient attending to a person’s cessation than any kind of radical efforts to forbid the death from happening. There is caring comfort in the face of death, but there is also a sense of quiet restraint and “practices of nondoing” (Sedgwick 2003, 175). This sentiment can be compared with the combative zeal that medical practitioners in Europe and the United States often show in trying to preserve a life.

RITUAL POIESIS, IN TIME

The generative dimensions of Yolmo lives and deaths are as much in evidence in the funeral rites that follow a death as they are in the life that precedes those rites. The funeral rites, which are usually performed in the first seven weeks after the death, similarly involve ritual and sensorial means to transform situations, consciousnesses, relations, and the phenomenal grounds of people’s lives. One aspect of the rites that is worth noting here is that a series of tangible images of the deceased serve to simulate the deceased’s identity, as it changes through time. Each of these images is first invoked, and then taken away, by being either burned or dismantled. In the hours and days immediate to a death, the corpse is prepared for the cremation and visualized as a deity. It is then cremated in an elaborate ceremony of dissolution and ritual sacrifice. Once the cremation is completed, a malsa, or “resting place,” is made and set up in the home of the deceased. Composed of the former clothes of the dead person, this resting place serves as a way station whereby the consciousness of the deceased can remain in its former home. The malsa is later dismantled and the clothes discarded. During the first main funeral rite after the death and cremation, a jhang par, or “name card,” is used. This piece of paper often holds the printed figure of a human being on one of its sides, and prayers on the other. The name of the dead person is written in an appropriate place in these prayers. At the crux of the ritual proceedings, a lama summons the consciousness of the deceased and then transfers it into the “name card.” The lama burns the print just as he “elevates” the consciousness to the Pure Land of Amitābha. The consciousness is elevated, lifted up, and transported to a purer, more enlightened realm, just as the name card, and the figure and identity inscribed within it, are dissolved into flames. During the final funeral rite, commonly held in the seventh week after the death, a life-size effigy of the deceased is often made. Built out of the clothes of the dead person and adorned with a sheer white cloth of a face, it is set up at the site of the funeral proceedings. People tend to treat the effigy as a simulacrum of the deceased, and they often relate to it as though the dead person’s consciousness is inhabiting that lifelike form. A name card is again produced and again set to flames to a flurry of dramatic music. At this moment, the effigy is dismantled, leaving a pile of loose clothing. The effigy’s sudden dissolution serves as an object lesson in the methods of life, death, and impermanence. The presence-then-absence of the effigy nods, again, to the constructed, relational, and empty nature of all reality. The act of “dismantling the effigy”

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reflects a second cremation: the deceased’s body is eliminated once again. Gone in a matter of seconds, it is torn asunder, disaggregated. In effect, images of the deceased are made and then destroyed time and again throughout the funeral rites. While it’s difficult to say for sure why this is the case, it’s evident that the making and unmaking of corpse images models the ebb and flow of life, as known by Yolmo Buddhists and perhaps Buddhist peoples more generally. Composite forms arise, exist, and cease to exist. Something once constructed is soon deconstructed. Persons are made and then unmade. A series of minor, fleeting rebirths and sudden, dramatic redeaths occur throughout the funeral rites. Apparently, there is a need to enact the death of a person time and again. Once the name card is burned for the last time, people tend not to speak the name of the dead person again in daily life. “The dead have no need for names,” I have often been told. The funeral rites as a whole trip a process of effacement, in which the deceased person’s “name” and “face” are gradually but decisively dissolved. The body is soon covered up in a white cloth. The corpse is cremated. No body remains after that. The name card, bearing the figure of a human being, is burned, after which the deceased no longer has a proper “name.” Bones, ashes, and the cinders of the name card are taken and molded into generic figurines known as tsha-tsha, which are placed in “pure places” far removed from the traffic of everyday life. No names are inscribed on these figurines, resulting, in time, in an air of collective anonymity to the dead. The deceased’s identity undergoes a comprehensive transmutation. What occurs is a ritually geared movement from more personalized and concrete physical images of the deceased to more depersonalized, abstract, and collective ones. Step by ritual step, image after image, the deceased comes to be signaled in more remote, subtle, nameless, and unworldly terms. Other transitions arise as well. The dangerous impurity and coarseness generated by the corpse alters into the purity and transcendent otherworldliness associated with figurines and relics. Whereas corpses, effigies, and name cards are but fleeting images, the qualities central to figurines, relics, and shrines point to objects that can last for years, generations even. In this dizzying swirl of cessation and continuity, images of the deceased skirt from the world of the living to that of the dying, from painful cycles of samsara and suffering to realms removed from this world, nodding toward the timeless and the painless. The imagery advanced by the funeral rites serves as an object lesson in the ways of life. The funeral rites teach both the living and the dead that living forms exist and then cease to exit. They offer a weeks-long meditation on what Yolmo people call chhiwa mitakpa, “death and impermanence.” Form slides into emptiness, and emptiness into form. The recurrent, successive body images model the life and death process, in a temporally abrupt, accelerated form: arising, abiding, ceasing. “The great lesson of Buddhism,” scholar John Strong points out, “is not that of impermanence, if, by impermanence is simply meant ‘nothing lasts forever.’ It is rather that of process—that things, beings, buddhas come into existence due to certain causes and go out of existence due

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to certain causes” (2004, 6). The funeral rites convey just this lesson. A Buddhist philosophy of life and death is conveyed, but through ritual practice rather than explicit statement or textual exegesis. Traces of a person are here, then gone, present and absent afresh, in a cycle of rebirth and redeath. Form flows into formlessness, and then tides back to form and formlessness again, with neither of these ever fully complete. Seen from another perspective, it may well be that the recurrent reinvocations of the deceased involve a play of ambivalence. Mourners want to hold on to their lost loved one, to preserve their ties to the deceased, to keep the deceased alive and present in their lives and thoughts, as though he or she were not really dead. But they also concede that it’s best to sever attachments and help the consciousness of the deceased wean itself from its present life and move on to a next life. Stay, don’t go. You must go, the rites seem to be saying. In line with this tug-of-war of competing desires, presences of the deceased are invoked and then undermined in the same ritual breath. Care for a corpse, but eliminate it. Call the consciousness back to the house, only to tell it that it must leave. Construct an effigy, then dismantle it. Retain, yet relinquish. The funeral rites tender a theater of ambivalence. They gird this wavering ambivalence, make a theme of it. The funeral rites also mark the progression and passing of time, both through the weeks-long expansion of the rites and by route of the churning transformations and temporal density of so many ritual moments. As such, the rites show how the passing of time inevitably involves difference and change.4 Does this pressing sense of temporal difference help mourners to grasp how the forms of their loss can come to be altered?

L I V I N G A N D DY I N G

As the years march on, my work with Yolmo people has led me to better appreciate the intricate weave between life and death. When I began this research on dying and death among Yolmo people, more than a decade ago, I saw in death endings only, a terminus of life and relation. It’s now clear that with many unexceptional deaths new connections take form, in vast swirls of continuity. Mourners find new ways to relate. They rethread linkages, with the strands available to them. They sustain contact through specific remembrances, through a strong sense of ritual responsibility, through offerings of food and sensate touch, through new involvements and a fix of imaginative and ritual efforts. The living keep lost ones “near.” Rituals fill in the blankness. The pulse of life finds new channels. Life itself is generative, transitive, echoic. All of this might help us to glean a better angle on life more generally. Death is often taken to be the absolute other of life. Yet it can also be said that the words life and death mark situations more complicated than that binary arrangement alone. Being alive is clearly different from not being alive; there is a “difference of kind” between the two, not simply a difference of degree.5 Yet the ever-changing flow of life and death, presence and absence, includes varying intensities and thresholds of existence, the circling of memories plush with life, moments at once actual and virtual, ghosts as real as people and

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people as vacant as ghosts. The end of one set of bonds leads to new strands of connection. A life implies the imminent remove of that life, while the loss of a life can bring a fullness of memories, feelings, and reverberations. There can be a richness to loss, much as there can be a paucity to life, making for nondualistic swirls of vitalities quick to alter. Moments of dying are found in moments of living, and vice versa. An abiding theme in many a life is the knack for crafting new conditions and relations in life. And yet so often people face continued hardships, the edge is rough, and there is a fine shaky line between despair and renewal.

N OT E S

1. For recent anthropological accounts of death and dying in a number of societies, see Scheper-Hughes 1993, Lock 2002, Kaufman 2006, Pinto 2008, Desjarlais 2002, Das 2007, and Green 2008. For accounts of death in Tibetan Buddhist societies, see Mullin 1988, Thurman 1994, and Dorje 2006. 2. The “Liberation upon Hearing in the Between,” written as bardo thos grol in Tibetan, is a set of mortuary texts that detail what people can expect to encounter during the phantasmagoric journey through the bardo “between” that follows a death. Usually pronounced as “Bardo Thedol” in Yolmo, thought to be authored by the great master Padma Sambhava in the eighth or ninth century, used primarily by adherents of the Nyingma sect of Tibetan Buddhism, and famously and somewhat inappropriately known in the West as “The Tibetan Book of the Dead,” the set of texts explains in great detail what a person can expect to occur in the hours and days after dying. If a reader or listener understands the texts’ teachings well, it is held, he or she can achieve liberation from the world of samsara. 3. I take the term spectral subject from Boulter 2008. 4. This observation relates to Henri Bergson’s idea that time—and life more generally— imply processes of differentiation and novelty, as evident in his claim that “[t]ime is the invention of the new, or is nothing at all” (Bergson [1907] 1998, 340). On this see also Marrati 2011, 48. 5. To use terms of Deleuze (1994, 4).

REFERENCES

Arendt, Hannah. 1958. The Human Condition. Chicago: University of Chicago Press. Bergson, Henri. (1907) 1998. Creative Evolution. New York: Dover Publications. Boulter, Jonathan. 2008. Beckett: A Guide for the Perplexed. New York: Continuum. Das, Veena. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Deleuze, Gilles. 1994. Difference and Repetition. New York: Columbia University Press. ———. 2001. Pure Immanence: Essays on a Life. Cambridge, MA: Zone Books. Desjarlais, Robert. 2002. Sensory Biographies: Lives and Deaths among Nepal’s Yolmo Buddhists. Berkeley: University of California Press. Dorje, Gyurme, trans. 2006. The Tibetan Book of the Dead: First Complete Translation. Edited by Graham Coleman with Thupten Jinpa. New York: Penguin Press.

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Green, James. 2008. Beyond the Good Death: The Anthropology of Modern Dying. Philadelphia: University of Pennsylvania Press. Gyatso, Janet. 2002. “The Ins and Outs of Self-Transformation: Personal and Social Sides of Visionary Practice in Tibetan Buddhism.” In Self and Self-Transformation in the History of Religions, edited by David Shulman and Guy Stroumsa, 183–94. New York: Oxford University Press. Heidegger, Martin. 1982. The Question Concerning Technology, and Other Essays. New York: Harper Perennial. Jackson, Michael. 2005. Existential Anthropology. New York: Berghahn Books. ———. 2011. Life within Limits: Well-Being in a World of Want. Durham, NC: Duke University Press. Kaufman, Sharon. 2006. . . . And a Time to Die: How American Hospitals Shape the End of Life. Berkeley: University of California Press. Lambek, Michael. 2002. The Weight of the Past: Living with History in Mahajanga, Madagascar. Hampshire, UK: Palgrave. ———, ed. 2008. A Reader in the Anthropology of Religion. New York: Wiley-Blackwell. Lock, Margaret. 2002. “Inventing a New Death and Making It Believable.” Anthropology and Medicine 9:97–115. Marrati, Paola. 2011. “The Novelty of Life.” Constellations 18:48–52. Mullin, Glen. 1988. Death and Dying: The Tibetan Tradition. New York: Penguin Press. Pinto, Sarah. 2008. Where There Is No Midwife. New York: Berghahn Books. Sartre, Jean-Paul. 1963. Search for a Method. Translated by Hazel Barnes. New York: Knopf. Scheper-Hughes, Nancy. 1993. Death without Weeping: The Violence of Everyday Life in Brazil. Berkeley: University of California Press. Sedgwick, Eve. 2003. Touching Feeling: Affect, Pedagogy, Performativity. Durham, NC: Duke University Press. Spinoza, Baruch. 1985. The Collected Works of Spinoza. Vol. 1. Edited and translated by Edwin Curley. Princeton, NJ: Princeton University Press. Stevenson, Lisa. 2009. “The Suicidal Wound and Fieldwork among Canadian Inuit.” In Being There: The Fieldwork Encounter and the Making of Truth, edited by John Borneman and Abdellah Hammoudi, 55–76. Berkeley: University of California Press. Stewart, Kathleen. 2005. “Cultural Poesis: The Generativity of Emergent Things.” In Handbook of Qualitative Research, 3rd ed., edited by Norman Denzin and Yvonna Lincoln, 1027–42. New York: Sage Publications. Strong, John. 2004. Relics of the Buddha. Princeton, NJ: Princeton University Press. Thurman, Robert, trans. and ed. 1994. The Tibetan Book of the Dead. New York: Random House.

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37 LONELY DEATH Possibilities for a Not-Yet Sociality

Anne Allison

Despite their ubiquity in a country that is demographically aging, old people are disappearing in Japan. Or at least that was a lead story in August 2010: the case of the missing elderly. On August 4, the headlines read: “Fourteen elderly, status unknown.” By the next day, the number had risen to thirty-one nationwide. And by the 6th, forty-nine centenarians couldn’t be found. “Whereabouts unknown” (shozai wakaranu); “existence unclear” (kōreisha fumei); elderly gone (“Kobe, 100sai ijō 105 nin fumei” 2010). August is marked by searing heat and memorialization of the dead. This is the season for Obon, the Buddhist custom of returning to the family grave to honor and rejoin deceased spirits. This makes it (also) a time when Japanese go back to natal homes, often in the countryside, for a short respite from work and hectic lives to gather with family. As things slow down and bygone times are revisited, Obon stirs up an affective cocktail— of longing, nostalgia, and anxiety—around home. It was in this season, of dead spirits and heat, that police investigated the whereabouts of its centenarians. What started things off was a would-be birthday greeting. But when local officials visited his home in Adachi ward, Tokyo, on what should have been his 111th birthday, Katō Sogen turned out to be a mummy, dead for almost three decades. A seventy-nine-year-old daughter admitted she had kept his body since the late 1970s to pocket the man’s monthly pension payments. In a nation priding itself on having the highest longevity in the world (86.4 years for women; 79.59 years for men) and on keeping fastidious official records on all matters of life and death, the news disturbed people. Local governments responded immediately. Sending out teams of investigators to check on the whereabouts of their

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own centenarians, they discovered that many, in fact, were missing, unaccounted for, or already dead. In some instances, it was clear that deaths had been willfully concealed so family members could gather pension payments. But more often neglect was to blame. Neglect in the reporting of death by family members and in sloppy record-keeping by governmental officials. And neglect in the treatment of the elderly themselves by a social order where filial piety, once considered sacred, had obviously slipped. In asking citizens about their elderly, the police often learned that families didn’t know where they actually were or even, in some case, if they were still alive. As with one resident in the Minato district of Tokyo whose records reported him to be 105, the family responded about his whereabouts: “He left home several years ago. But where he went then or whether he is dead now, we don’t know” (“Fumei 100 sai ijō 279 nin” 2010). After a month of investigations, the government announced the tally; more than 230,000 centenarians who had been listed as still alive on government records were actually missing and assumed to be dead. But there was one upside to the story. Regarding Japan’s claim to the highest longevity in the world, the government assured the country that this statistic, at least, was still intact. The case of Japan’s “disappearing old people” (kieta otoshiyori) rubbed a raw nerve. It was another sign of “Japan’s loss of relationality in family and community alike,” as commentators decried. More evidence of Japan’s “relationless society” (muen shakai)—a phrase coined by NHK, Japan’s national broadcasting network,1 in a much-publicized special it ran in January 2010 on a related phenomenon: the incidence of elderly Japanese who die all alone in their homes. Here, in gritty relief, the reportage showed the desperate straits of isolated elderly trying to survive daily life, as well as the cleaning service that comes in to mop up after they’ve died—usually throwing everything away because no one is willing to claim the remains. The traces of a person’s life, and that life itself, treated as garbage. On the screen, the number “32,000” kept flashing to indicate how many elderly had died alone the previous year in Japan—a new condition that is called both “lonely death” (kodokushi) and “relationless death” (muenshi). At a time when one-third of all Japanese and 23% of the elderly now live alone—and when the overall population is shrinking due to low childbirth but the percentage of those who are aged is expanding quickly—the incidence of lonely death is on the rise. The rate has tripled over the last two decades (Manabe 2012), and stories of decaying or mummified remains discovered in an apartment or room where someone has lived isolated for years have become commonplace. Approximately twenty lonely deaths occur nationwide every day, with the rate double for men, higher in the cities, and the discovery of bodies after the fact (part of the definition of “lonely death”) averaging twelve days for men and six days for women. Friends sobbed when watching the NHK special, they told me, out of sympathy for those profiled on the show but also out of identification with the state of solitude so wretchedly portrayed—something they’d experienced already or could well imagine becoming entombed in themselves as they aged.

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But what are the conditions under which people lose track of their elderly and are left, or leave others, to live and die unaccompanied by anyone else? Something in the calculus of human worth—in what and who counts as having a grievable life (Butler 2009) and the role played by social institutions like family in upholding this—would seem to be amiss. For, as Alphonso Lingis suggests, “a society that would forsake the dying to die alone, whether in hospitals or in the gutters, undermines itself radically” (1994, x). Or, as a Japanese reporter put it in reference to the case of the missing elderly, the failure to attend to those members of society who are vulnerable by age (or anything else) demonstrates a “a type of abandonment through disinterest” (New York Times, August 15, 2010). This is the issue I take up in this chapter: lonely death as symptomatic of a state of social life today of increased loneliness and disconnectivity that Japanese debate and sometimes protest against, a state they call muen shakai. And there are other examples such as hikikomori: a condition of social withdrawal in which young people, as many as one million in Japan today, retreat to a single room where they stay, disconnected and uncommunicative, sometimes for years; and NEET (not-in-education, employment, or training), a related syndrome, with estimates of 2.5 million in Japan today. And suicide—the state of disconnecting from life itself—which, spiraling to a troubling rate (of thirty-two thousand to thirty-three thousand deaths per year) in 1998, has stayed high ever since, with the highest demographics being middle-aged men and youth. As with lonely death, these behaviors— of disassociation, somehow, to some degree, and for some longevity, from the world of other humans—signal a shift of the social as it has been organized in Japan’s recent past, at least for some people. Those most susceptible and at risk are in the muen shakai: a society (shakai) of not (mu) having ties (en). A stage where being isolated or disconnected from others has become chronic—where those who would be “already dead” in another time period (due to old age or not fitting in) stay biologically if not socially alive. And in what Eric Cazdyn (2012) calls this “new chronic time,” the already dead live longer and longer these days, albeit in a state that is “in between everything else.” A social state—in the case of the lonely dead, missing elderly, withdrawn youth in Japan—that, “whatever this something in between is, . . . is as supple as hope and as hard-felt as a needle in the arm” (2012, 10). Hard-felt but supple: what I contemplate in this chapter as a precarity of living with(out) others that has possibilities for pushing into a social something else. Whatever it is, however, lonely dying/living produces a kind of suffering that, in Elizabeth Povinelli’s terms, is ordinary, chronic, and cruddy rather than catastrophic, crisis laden, and sublime. A dispersed suffering that, driven by an unequal distribution of life and death, accompanies a neoliberal economy with its modes of making die, letting die, and managing to live hyped to a system where all social value is reduced to that of the market (Povinelli 2011). What is the ecology here of social belonging and care—and its apparent antithesis, abandonment and solitude—in life as well as death? And what is the sociology of potentiality: conditions under which new forms of social life, or a social otherwise, are emerging that resist what the commentator above referred to as “abandonment through disinterest”? Abandonment even, or particularly, by family: the social unit

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still expected to register the life and death of Japanese citizens despite the fact that its aspirationally normative form, which emerged as part and parcel of the postwar capitalist state, is severely at risk now for many Japanese (Allison 2013). This is the gist of my argument: that it is both the genesis and degeneration of the postwar “family-corporate system” that conditions the very specific form of social precarity experienced by Japan and the Japanese today. A precarity that produces suffering—ordinary, chronic, and cruddy— but also carries the seeds of new possibilities of being, belonging, and caregiving others for, and from, the (otherwise) already dead.

I N T E R E S T E D B E L O N G I N G : T H E C O R P O R AT E FA M I LY S YS T E M

Disinterest is akin to dis-belonging: a part that becomes extraneous to the entity that no longer incorporates it and expels it as waste. The quality of being needed is “the first and most common use of the word human,” Tova Hojdestrand writes in her book on homelessness in postsocialist Russia (2009, 10). Treated as social waste and excluded from a moral community, the homeless are “needed by nobody” because they lack what is needed to acquire identity and citizenship: a proper residence and the papers (propiska) to show it. In this sense, social waste is a result of modern social design: of creating human “leftovers” because its resources—including housing—are distributed according to a model of what society should be like and how its members will (or won’t) fit in. In Japan, human leftovers get created according to a social design premised on both family and economics—and their intertwinement in postwar Japan under state-sponsored corporate capitalism (“Japan Inc.”), rapid urbanization and industrialization, and a decrease in family size along with its nuclearization. Family and workplace became ensconced together in a vise of competitive productivity: the “family corporate system” in which belonging was tied to role, geared to productive output, and morally infused. This meant men put in long hours at work as “corporate warriors,” women devoted themselves to running the household and raising children as “education mothers,” and children trudged between school, cram school, and desks at home in study regimens programmed to ensure academic success (Allison 2012). Designed according to a model of competitive capitalism, the family operated as a distributive mechanism (for extending the “family wage” of the breadwinner); as a privatized machine of social reproduction (ensuring longer working hours and more labor extracted from core workers—mainly men); as a disciplinary apparatus (extracting highfueled competitiveness from its members); and as the de facto care provider (so the state could save on welfare expenditures) (Weeks 2011). In Miranda Joseph’s terms, the “community” of family serves as a supplement to capital: “a surplus that completes it, providing the coherence, the continuity, the stability that it cannot provide for itself, although it is already complete” (2002, 2). Supplementary (but instrumental) to capitalism, the family engineers competitive productivity in return—as the bargain went in postwar Japan—for security and prosperity of daily life. And, indeed, this bargain worked well

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(enough) during the boom years of high economic growth: an era when, during the 1970s and ‘80s, 75% of the population identified as part of the middle class, seeing the good life—of stable jobs, material prosperity—as within their reach. But as the neoliberal marketplace shifts more to irregular labor and away from the lifelong jobs of the salary-man so tied to the male-breadwinner/female-caregiver familial model, the life of the family is in crisis, particularly for those un(der)employed (Takeda 2008). Currently, one-third of the labor force but one-half of all young workers (aged eighteen to twenty-four) are irregularly employed, which includes contract, temporary, and part-time jobs (Osawa 2010). Such precarious employment (Standing 2011) is risky in any number of ways; typically much lower paid, without benefits or bonuses, and unguaranteed overtime, it rarely accords a worker the kind of identity or security once tied to a steady job. This makes acquiring a family and home of one’s own—the “my-homeism” of the Japanese postwar dream—ever more remote as well. Irregular workers are only half as likely to marry as those with regular jobs, and economic insecurity is the foremost reason given for the decreasing marriage rate in a country where, while most young people say they’d like to marry, fewer and fewer do (Yamada 2001). As the younger generation of precariat fail to find their place as adults2—marked by a steady job, marriage, and such materialist accoutrements as a car—they linger as children in a social limbo where they feel disposable and discounted: “already dead,” as one thirty-one-year-old put it after working eleven years at the same low-wage job and still living in his parent’s home (Akagi 2007). Given, too, that bearing children out of wedlock remains rare in Japan (only 2% of births) and that even those who are married are reproducing less and less, the fertility rate has decreased below replenishment of the population, and all the while the numbers of the aging/aged are rising fast. With its “lowbirthrate highly aged” (shoshikōreika) demographics, Japan sports a population that not only is becoming disproportionately elderly (23% over sixty-five, with the figure predicted to be 40% by 2040) but has been shrinking since 2007 as well. But this does not mean that the horizons of expectation or calculus for well-being and social worth have radically changed in post-postwar times. Many Japanese remain “cruelly optimistic” (Berlant 2011) in their attachments to the standards of productivity and benefits of belonging that accrue to those successful in the male-breadwinner/female-caregiver formula of the family corporate system. But no one speaks of the country anymore in terms of “Japan Inc.,” which makes its imbrication—of corporation and family—out-of-date: a fact realized only too cruelly by all those pegged as “losers” (un[der]employed, unmarried, childless) in what is increasingly becoming a two-classed society, polarized between those with—and without—economic security, prospects for the future, and hope.3

ABANDONMENT THROUGH DISINTEREST

If the logic of familial/social value is economic productivity, then those who are unproductive in an era of increasing socioeconomic precarity risk being abandoned as waste; needed

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by nobody—abandonment “by disinterest.” The fate of the missing elderly. In the investigative study that NHK did for its TV special and follow-up book of muen shakai (relationless society) (NHK purojekuto 2011), it tracked a number of the cases of the thirty-two thousand who die alone every year. Typically, ties with families—by birth or marriage or both—have been stagnant for years. This was the case of “Fujita-san,” who died relationless at age fifty-five in April 2009 in Tōyama. Having been raised in a wealthy family that went bankrupt, he inherited nothing, and after his father got sick, the brothers dispersed. He subsequently married as a yōshi,4 thereby assuming his wife’s family name, and was gainfully employed in construction and then as a taxi driver for years. But after divorcing, he didn’t stay in touch. When later, in his fifties, he lost his job and became sick, Fujita was all alone—the state in which he died. As in many of the cases of the lonely dead they investigated, the NHK research team discovered that, when the next of kin is contacted by the municipal office, they often refuse to claim the belongings or bodies of the deceased. To the researchers, this “refusal to claim” (hikitori kyohi)—belonging as much as belongings—symptomizes the deterioration of family/social connectedness (tsunagari) in Japan’s relationless society today. When they tracked down his next of kin, his ex-wife said that she hadn’t heard from him for twenty years, and his relatives told them that, since he’d changed his family name upon marriage and had never changed it back, Fujita was no longer part of the family registry and couldn’t be buried in the family plot (haka). To be alone in life continues then into death. For those “with no place [ibasho] in life, it’s the same, with no place to go [yukiba] when dead” (NHK purojekuto 2011, 83). Some Buddhist temples accept such human leftovers; often located in the countryside, they are sent the unclaimed dead by municipal offices in the cities and place them in containers for “muenbotoke” (relationless “Buddhas,” as the dead are called). But there is another destination for the unclaimed dead, as the NHK team discovered in the case of Fujita. This is as corpses “gifted” to science in Japanese public hospitals or research institutions. Fujita wound up at Niigata Hospital, where the officiating doctor told the researchers that, due to a shortage in their supply of medical corpses, the hospital had started turning to municipal offices for unclaimed bodies—always, he reassured them, seeking permission first from any next of kin. Apparently Fujita’s brother had signed off in his case (being given the legal right to dispose of a member that the family no longer claimed in any other sense). This became Fujita’s endpoint: “kentai [gifted corpse] no. 94” at Niigata Hospital. A gift, in death, to the state. In the registry, next to the reason for donation, is written “didn’t have a survivor.” So, without the ties of interest to one’s family, one can get abandoned as a medical corpse to the state (NHK purojekuto 2011). As “the function” of family changes in twenty-first-century Japan, so does the capacity to give recognition and care—a duty once assumed by family but increasingly by no one or nothing definitively these days. Without a “blood relation to claim one’s body upon death, there is no one to be recognized by as a general rule” (NHK purojekto 2011, 98). This leads to not only missing elderly and relationless dead but also abandoned souls—a pressing

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issue after 3.11 (the compound disaster of earthquake/tsunami/nuclear meltdown on March 11, 2011), when thousands of bodies remained missing even months later. But the “refusal to claim” belonging(s) is not just the effect of soulless families abandoning their useless members—the lean and mean model of capitalist efficiency at home. Increasingly, Japanese themselves are choosing to limit their dependency on others by living alone and embracing an ethos of self-responsibility (jiko sekinin). Self-reliance, self-independence, self-sustainability—selfness itself is the new credo of post-postwar times. And along with this is the desire (or injunction) to not bother anyone else, which seems to circumscribe moral community sometimes to an entity of one. This is what the NHK team uncovered when interviewing a number of the residents living alone (30% of the total) in a large housing complex in Osaka. For 48%, their days were spent basically alone, sometimes uneasily—such as when having no one to help them if they fell down going to the store. But whereas only 12.8% lacked kin altogether (and 70% had children), only 4% answered yes to the question of whether they planned to live with family in the future. For those who said no, the overwhelming reason given was not wanting to bother anyone (NHK purojekuto 2011). Care as a burden. Burdening others, which extends to the need for recognition and grief. But the desire—to be recognized by others (when alive) and grieved by loved ones (upon death)—remains all the same: a sign of cruel optimism. This is the story of Noriko’s Dinner Table, a parodic film released in 2005 about the dystopic landscape of relationless Japan where families, disjoined in real life, restage attachment in a fictive, commodified form. In one scene, halfway through the film, an elderly man appears to be dying. Flat in bed and body totally inert, he seems finally gone, which triggers wailings of grief from the distraught family members gathered around. Clutching the bed and shrieking their adieus, the family extends their drama for a few minutes. Then the old man abruptly jumps up and laughs in glee. Satisfied by the performance, he happily pays the actors their fees before they rush off to perform somewhere else. As if investing in a proxy for the familial grief that won’t come when he dies (all alone), the man has purchased the services of a rental family. Playacting “family” repeats throughout Noriko’s Dinner Table. Though done for comedic effect in the movie, rental family is an actual practice in Japan, where a family of four, for example, will visit an elderly couple on a Sunday afternoon, sharing a meal, showing off well-behaved kids, and fussing over the old man’s bonsai or woman’s tea utensils as if the kinship (and attachment) were authentic. Gestures of family outliving, and standing in for, familial life itself.

P O S T- P R E C A R I O U S P O S S I B I L I T I E S

But the family is not only getting playacted, kept alive by staging its performance in rituals paid for by Japanese who feel lonely for, or abandoned by, its (cruel) optimism. Out of the very precariousness of social living today—an age when more Japanese live alone, more are falling into the ranks of the working poor or un(der)employed, and more public

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attention is being paid to such social dis-eases as suicide, social withdrawal, and lonely death—people are also experimenting with different arrangements for finding companionship, care, and social credibility outside that of the family corporate system. A system in which sociality was overly, and too narrowly, conscripted to forms of relationship calculated to be durable over time—long-term contracts to the workplace, patrilineal descent lines congealed to heteronormative marriage and the reproductive futurism of kids (Edelman 2004), a sense of place sutured to the accumulation of material possessions and consumerist excess. A format for being and belonging that has become too exclusive and precarious these days. As Manabe Hiroki writes in his book on the state of the family following the compound disaster of March 11, 2011, if the last function of the family is to provide a space where one belongs (2012), then the challenge facing those without such a space is to find or create a new one. The word Manabe uses here is ibasho (where one feels comfortable and at home), a term I heard repeatedly in the course of doing fieldwork on social precarity in Japan from 2008 to 2011 to reference mainly its absence or loss. As people told me—across age, gender, job, and marital circumstance—there is a widespread sense of unease in everyday living. Something that registers existentially as insecurity (fuan, fuantei)—not in a major way (that is, before 3.11 hit and made visible and large scale the precarity percolating already), but in the daily reminders of discomfiture and not-athomeness felt by those worried about work, struggling with loans, pegged a “loser” for not having attained success, marriage, or family (or with an adult child still stuck—going nowhere—at home). Unease in ways that are cruddy, chronic, ordinary. Writing about the hikikomori (socially withdrawn) he works with, psychiatrist Serizawa Shunsuke notes how homeless so many feel—psychologically, existentially, intimately (Nihon kodomo sōshyaru wāku kyōkai 2005). And these, for the most part, are young people who live in their parents’ homes, but are affectively alone, feeling untouched, unaccompanied, unrecognized by anyone else. A condition of sociality in between life and death: what so many elderly report. But these are not only the elderly and withdrawn youth, but also many others strewn in between. In a society where disconnectedness (muen shakai) makes Japan and the Japanese today a “lonely tribe” (as a series in the Asahi Shimbun newspaper labeled this). But as I discovered in the course of my research, resistance to encrypted living is occurring as well. Not exactly a social revolution or activism for life, what I found were attempts made—typically by or for those most endangered by social isolation—to build or foster connectivity to other humans or living beings beyond those that have been so relied upon (workplace, family) in the past. Calls to reanimate life—and new forms of it—out of the precariousness of a sociality becoming defunct. I don’t quite know what to call this, but, whether a politics of survival, virtualization of the social, or rental intimacy, sociality is undergoing some change. For example: Targeted to the lonely and all alone, there is a nationwide movement to establish “regional living rooms” (chiiki no chanoma): spaces, often in converted houses,

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that serve as drop-in centers where anyone can spend the day drinking tea, eating lunch, “humanly touching” others: an ibasho without membership open to a generic “us.” NALC (Nippon Active Life Club) is a care bank where volunteers donate time tending to others and bank their hours in a currency that can be withdrawn later when in need of care themselves (or converted to care for a family member living elsewhere). “Share-houses,” a new fad, are the basis of a coresidential practice where (once-) strangers live together to save money and provide mutual support (Nishikawa 2012). Digital communication/ relationality is exploding through high-tech machinery and social media (Slater, Nishimura, and Kindstrand 2012). Some young people say that this is their primary site of/for sociality (opening up possibilities, however, for bullying as well as intimacy), and techno-companions, such as the virtual pet tamagotchi, become portable ibasho for their owners (Allison 2006). Japanese research and development in care robotics is the most advanced worldwide, and the market in commercial services for care and companionship of polymorphously perverse kinds (cat cafés, rental dogs, host clubs, and every iteration of sex service) has skyrocketed. And, for youth suffering from social withdrawal and un(der)employment, there is a rise in initiatives (sponsored by the state, local governance, and/or NPOs) such as in Niigata City with an entire facility to support young people that has recently added personal counselors to give individualized “coaching” to anyone who seeks it. Recent events have also jolted the country into what, particularly in the early aftermath of 3.11, was repeatedly articulated as the need for a collective will—“Japanese united as one,” Japanese refinding their communal ties (kizuna). In the wake of the worst earthquake in the country’s recorded history with the compounded effects of a killer tsunami and nuclear-reactor meltdown (with over twenty thousand dead, eight hundred thousand displaced, and trillions of yen in damage of property and costs for compensation, relief, and reconstruction), people felt struck by a precarity of a new order and newly shared (or shareable) form. Some (such as author Murakami Ryū and fandom guru Azuma Hiroki) declared this an opportunity to reclaim their collective humanity, as if, shocked by natural/national crisis, the Japanese could regain their sociality. And, indeed, in the outpouring of volunteerism, concatenation of NGOs (many DIY, put together literally overnight), and efforts made to help out those in Tōhoku, to cut back on power consumption in Tokyo, and to reassess the country’s reliance on nuclear energy, Japan’s muen shakai (disconnectedness) was at least a bit shaken—massive protests in Tokyo, mothers marching to protect their kids from nuclear contamination, volunteers digging mud in the disaster zones in the hopes of saving if not someone’s life at least the photos they left behind. And out of all the death, displacement, and threat of contamination infecting those closest to the crisis zones, there have also been new social possibilities arising to accompany the living, and sometimes the dead. Many lost everything: family members, homes, the fields and boats used to subsist. Living in evacuation shelters sometimes close to the damaged nuclear plants, those with families often split up: men staying back to seek work, women and children resettling

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with relatives elsewhere in Japan. Alongside such “diaspora families” were also high numbers of elderly already living alone and a random mixing of people from different locales. As evacuees started moving into temporary shelters three months after 3.11, these jumbled living arrangements often continued for people dislocated multiple times over. One year later, 41,236 were still living in these shelters, sometimes anticipating a stay of far more than the two years originally predicted. Yet multiple initiatives sprang up— many infused by the energy of NPOs, volunteers, schoolchildren, and vacationers incorporating volunteerism in Tōhoku into their summer trips—to mitigate the alienation and disrupture faced by the displaced. In Sumita, Iwate, at a slight remove from where the tsunami struck, for example, it was the town itself that came forward to help build temporary shelters for evacuees from neighboring towns, to pay the extra costs to make these out of wood (instead of metal), and to help on a daily basis in providing services. And the town of Ōfunato provides an emergency service on cell phones for all its residents living in temporary shelters. If someone is in danger or just needs to talk, he or she can reach an operator anytime, day or night. The incidence of lonely death is proportionately far less following 3.11 than it was after the Hanshin earthquake in Kobe in 1995 (thirty-three reported by July 2012, compared with forty-six the first year alone following Hanshin), probably due to such measures to ward it off (Manabe 2012). But this does not mean that a social otherwise is, or should be, limited to the realm of the living per se—or to the realm of giving life to those dying (otherwise) alone. Sometimes it may be in death (or its in-betweenness with life) that sociality gets not only deframed but potentially reframed (Grosz 2008). I see such a possibility in a movie that was released the summer following 3.11 that tells a story about a man who dies what would be categorized a lonely death. Before that, however, he exists in a zone of social abandonment where he—already dead in multiple ways—exhibits a kind of longing nonetheless. Like J. M. Coetzee’s Michael K, this is a man whose life is pure bios and who lives—dead and missing to others—in a state of near (but not quite) human extinction. The rhythms and textures of this life—socially bare, existentially immediate, humanly ambiguous—point to something not yet known or in place. How to be in and belong to the world beyond the social death of lacking a job, having no family or spouse, being no longer productive or without secure income or career. Already dead but not expiring right away: a gesture to something else (if not quite yet). Set against a backdrop of sunflowers (which became a symbol of the rebirth of Japan following the crisis because, growing fast and tall, they also absorb radiation from contaminated soil) and based, in part, on a true story, the film The Dog Who Protects the Stars (Hoshi Mamoru Inu) tells the story of a middle-aged man who, after losing his job through restructuring, falls into a funk.5 Sitting at home doing nothing to find a new job or help around the house, he becomes crabby to his daughter and wife, who eventually asks him for a divorce. Agreeing to leave his family because he feels he already has done so by no longer being able to support them as breadwinner, “Father”—as the fallen patriarch is identified throughout the film—is now uprooted from both family and job. Becoming

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homeless, he hits the road in his van and takes the family dog, ironically (or not?) named “Happy.” The two wander the country from place to place: cashing in on a coupon he has at a B and B, trying to sell some of his possessions at a resale shop, befriending a young teenager he meets at a convenience shop (who subsequently robs him of his money), ending up in a café on the beach where he spends the last cash he has on a cup of coffee. On this journey to nowhere and in a temporality that is endlessly now, Father manages to keep going. But when he runs out of funds and can no longer afford gas, he parks the van in a forest preserve, where he and Happy scavenge the garbage bins for food. But once winter sets in, Father grows weak. Despite the bits of food his dog retrieves from a nearby town, he eventually dies—a death scene that goes on for nearly half an hour, aestheticized in close-up scenes of Father’s dying face. His dog survives him. But not for long. Soon Happy dies, too. Right next to Father, on the front seat of the van. When the two bodies are discovered by an official from the local municipal office, a man who is socially disconnected as well (which is a subtext of the film—the two stories of solitary men playing off one another throughout), he notices the cross of a grave built by the side of the car for Happy. Something about this story, and the grave the dying man built for his dog, inspires the younger man who, in the course of tracking the older man’s road trip, befriends a teenage girl and winds up with a dog himself. As the director has said about the film, he intended it to be about a kind of hope that comes from refusing to abandon longing. About finding a way to live despite, or within, being (socially) dead already. About living, then, in a new way. In a new social tense. In the film, though, Father does die. And he never reaches out to seek assistance from places or people who may have been able to prevent him from dying as he does. His profile is that of the typical victim of lonely death: a middle-aged man, impoverished and out of work, estranged from family and friends. The collapse of the patriarch who abandons, as much as is abandoned by, the family when his role as breadwinner dries up. But in this case, the man does not die entirely alone and has found not only a companion but also a “longing” in the life he has right up to death. This is something. Or, as Elizabeth Povinelli (2011) puts it, it is between something and nothing. Where potentiality of elsewhere begins. From death (of family-man) to something, possibly, else. A not-yet sociality playing off the borders of living, dying, and the ways we construct the in-between. N OT E S

1. Japan’s national broadcasting service. 2. The word precariat (from “precarious proletariat”) was first adopted in the context of Italian and French worker movements in the 1970s and has been picked up by Japanese activists for youth and the working poor such as Karin Amamiya (2007) and Yuasa Makoto (2006). 3. Yamada Masahiro has written that hope is becoming as precarious as jobs and marriage these days, to which he couples it, in his 2003 book A Differential Hope Society.

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4. Adopted at marriage. 5. Based on a manga (comic book) by the same name and directed by Takimoto Tomoyuki, the film was released in Tokyo on June 11, 2011 (three months after 3.11).

REFERENCES

Akagi, Tomohiro. 2007. “ ‘Kibō wa sensō: Maruyama Masao’ o hippatakitai 31 sai furīta.” Ronza, January, 53–59. Allison, Anne. 2006. Millennial Monsters: Japanese Toys and the Global Imagination. Berkeley: University of California Press. ———. 2013. Precarious Japan. Durham, NC: Duke University Press. Amamiya, Karin. 2007. Ikisasero! Nanminkasuru wakamonotachi. Tokyo: Ōtashuppan. Berlant, Lauren. 2011. Cruel Optimism. Durham, NC: Duke University Press, 2011. Butler, Judith. 2009. Frames of War: When Is Life Grievable? New York and London: Verso. Cazdyn, Eric M. 2012. The Already Dead: The New Time of Politics, Culture, and Illness. Durham, NC: Duke University Press. Edelman, Lee. 2004. No Future: Queer Theory and Death Drive. Durham, NC: Duke University Press. “Fumei 100 sai ijō 279 nin.” 2010. Asahi Shimbun, August 31. Grosz, E. A. 2008. Chaos, Territory, Art: Deleuze and the Framing of the Earth. New York: Columbia University Press. Hojdestrand, Tova. 2009. Needed by Nobody: Homelessness and Humanness in Post-Socialist Russia. Ithaca, NY, and London: Cornell University Press. Joseph, Miranda. 2002. Against the Romance of Community. Minneapolis: University of Minnesota Press. “Kobe, 100sai ijō 105 nin fumei.” 2010. Asahi Shimbun, August 11. Lingis, Alphonso. 1994. The Community of Those Who Have Nothing in Common. Bloomington: Indiana University Press. Manabe, Hiroki. 2012. 3.11 kara kangaeru “kazoku.” Tokyo: Iwanami Shoten. NHK purojekuto. 2011. Muen shakai. Tokyo: NHK shuppan sha. Nihon kodomo sōshyaru wāku kyōkai. 2005. Kazoku nishite hoshikoto shite hoshikunaikoto. Tokyo. Nishikawa, Atsuko. 2012. Otona no tame no shea hausu annai. Tokyo: Daiyamondosha. Osawa, Machiko. 2010. Nihongata-Working Poor-no Honshitsu. Tokyo: Iwanami Shoten. Povinelli, Elizabeth. 2011. Economies of Abandonment: Social Belonging and Endurance in Late Liberalism. Durham, NC: Duke University Press. Slater, David, Keiko Nishimura, and Love Kindstrand. 2012. “Social Media, Information and Political Activism in Japan’s 3.11 Crisis.” Asia-Pacific Journal, June 11. Accessed August 30, 2012. http://japanfocus.org/-Nishimura-Keiko/3762. Standing, Guy. 2011. The Precariat: The New Dangerous Class. New York: Bloomsbury Academic. Takeda, Hiroko. 2008. “Structural Reform of the Family and the Neoliberalisation of Everyday Life in Japan.” New Political Economy 13, no. 2 (June): 153–72.

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Weeks, Kathi. 2011. The Problem with Work: Marxism, Feminism, Antiwork Politics, and Postwork Imaginaries. Durham, NC: Duke University Press. Yamada, Masahiro. 2001. Kazokutoiu Risuku. Tokyo: Keiso Shobō. ———. 2003. Kibō kakusa shakai: “Makegumi” no zetsubōkan ga Nihon o hikisaku. Tokyo: Chikuma Shobō. Yuasa, Makoto. 2008. Hanhinkon: “Suberidaishakai” kara no dasshutsu. Tokyo: Iwanami Shinsho.

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38 CHEMONOTES Harry M. Marks Harry M. Marks died on January 25, 2011, at the age of sixty-four. The following emails were personal reflections that he shared with family members, friends, and colleagues during his time as an outpatient undergoing treatment for prostate cancer. Posthumously published in Social History of Medicine 25, no. 2 (2012): 520–39, they are reproduced here by permission of Oxford University Press on behalf of the Society for the Social History of Medicine.

15 A U G U S T 2 0 0 9 “MY, WHAT BIG TEETH YOU HAVE GRANDMA!”

Chemotherapy, I can now see, is going to be like those weekly serials my dad used to watch as a boy at the movie theatres in western Pennsylvania: “Will Randolph Scott / William Boyd save the fair maiden from the fierce Comanche?” “Will the green Army Lt. realize that his scouts are leading him to an ambush before it’s too late?” und so weiter. They tell you at the outset, of course, that suppression of white blood cells is one of the common side effects of chemo, and even that, in a minority of cases (∼10 percent) hospitalization to administer i.v. antibiotics post-infection occurs. Which doesn’t lead one to suspect that the first dose of taxotere will plunge one’s neutrophil count from an adequate 3800/cc to the low 700s, and stay there for two weeks while you are living with “neutrophil precautions”: avoid crowds and/or wear a mask, no air travel (crowds + enclosed space + death-bearing fellow passengers), take your temperature twice a day to watch for infections, scrub everything with soap and water 24/7, and, oh yes, no gardening (plants + molds + woe is you). Still, this week’s episode ends with our hero’s neutrophils restored to respectability [wow, some bone marrow, eh!], just in time for Tuesday’s scheduled dose 2 of treatment. Will our hero’s neutrophils again plunge downward? ‘Dunno, we’ll have a better idea after this round of treatment whether this was a characteristic or idiosyncratic response. Doesn’t usually happen in chemotherapy-naïve patients but everyone’s different.’ Which is coming to be the mantra of contemporary medicine, along with ‘we’ll see.’ Tune in next week for the next installment of our thrilling saga. Of course, life isn’t quite so medically defined. Restored neutrophils means I got to hear 3 generations of McComiskey’s last night [Billy, Sean, Michael] on the button

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accordion, along with a rocking band—two accordions, two fiddles, two flutes, banjo, drummer, and pianist—which is trying to raise money for their trip to Ireland to compete in the 2009 Fleadh in Tullamore. Maybe it’s three fiddles—Rosie Shipley will join them over in Ireland, where she is already. The turnout was not extraordinary—money is tight in Baltimore at the moment. Ordinarily, between uncles, aunts, cousins and camp followers, these folks would have a full house. There’s a benefit Sunday at J Patrick’s pub, which apparently has been suffering poor business this year. These are unusually accomplished musicians, but I doubt any of the younger generation who do the traveling musician bit can actually live off it. The drummer, for one, has a day job in the U.S. Army. According to today’s NY Times, the bioethicist Daniel Callahan did time in the hospital earlier this summer with heart surgery. No, he reported, he did not comparison shop when his chest pains started, but headed out to the medical center his cardiologist directed him to. He did spend much time musing on the irrationalities of contemporary health care delivery and health care reform, once he came out of anesthesia. Moi aussi, Dan—been doing that a lot lately. Meanwhile, Obama’s having a hard time making his case in Wyoming and Colorado (and apparently on Capitol Hill); it’s once again remarkable how quickly the issue turns to ‘what will I lose’ whenever health care reform achieves serious legislative momentum. Though it is clear that at least some of the dis-ease with the current plan has to do with a general sentiment that Obama has already mortgaged the farm, what with the bank bailout and other parts of the stimulus package, the Afghanistan initiative, and the like. At this point, even Obama seems on the defensive, spending more time telling people what he will not do (‘no, Virginia, there are no death panels’) than outlining what he is doing/will do. This is in part a function of the political dynamic, and in part a function of Obama’s handling of the reform initiative. At this point, it’s hard to imagine him talking seriously about managing care and resource allocation, given the anxieties already out there about these issues. Which leaves him with no plausible way to pay for health care reform. The other news which struck me were the several thousand people showing up for free medical and dental care in LA. The care was provided by an outfit which formerly delivered services to underserved rural populations—Navajo shepherds in the Nevada mountains?—but which has found its hands full in LA. Somehow, this story, which should speak for itself, has no purchase. I find it far more compelling than the Nation’s story about the woman whose insurer denied coverage for a cancer treatment that seeks out tumor cells “like a smart bomb.” Uh huh. What’s the data on that one, I wonder. Enough about health care! Two cover stories this week about my former colleague Ashraf Ghani, who is running for President of Afghanistan. An anthropologist and former World Bank staffer, Ghani long ago sketched out some of the smartest ideas I’ve heard about rescuing the Afghani economy—by getting access to European flower markets and the like. Apparently, the Dutch and German flower markets are one of the few outlets for crops as profitable as opium. The EU did not welcome this proposal with open arms. Anyway, the Times has been following AG’s campaign admiringly. I know

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what they mean: the man is a hero, and it is quite remarkable that he hasn’t been simply assassinated by some faction or other in the years since he returned home to work for reform. The Times doesn’t quite manage to come out and say that the only way for AG to get elected is to give a vote in the Afghanistan presidential elections to the Upper West Side.

18 A U G U S T 2 0 0 9 NOTES FROM THE MEDICAL FRONT LINES: THE BATTLE FOR HARRY’S BODY

In the waiting room. Three women. Cancer veterans. All have been through several successful treatments, two have metastatic disease, one has leukemia—all the aftermaths of previous cancers/treatments. They exchange information about treatments, stories about their doctors, their careseeking, their information seeking, their negotiations of cancer treatment, work, family. All existentialists, of the ‘They Drive By Night’ sort, even the one with the Holy Bible in her lap, a white woman from somewhere around York, PA, with her adopted AfricanAmerican daughter, a pre-teen. The second drives up each day from northern Virginia, then drives home and goes to night work. She shares her story of ‘taxotere’ with the woman who is just beginning a round of ‘taxotere’ for her disseminated cancer: “It was hard on me, very hard, taxotere, but it did knock the cancer way back.” (Hurrah for my drug, say I silently.) Her work is connected to drug development, somehow, and she is the most knowledgeable of the three, but they are all supportive of one another’s choices, whatever they have been. Like the doctors, they invoke the mantra of individuality to tell their stories, past, present and future. The premises of individuality are distinctive, from biological idiosyncrasy to the Lord’s hand, but the premise is explicit. Pennsylvania tells a funny story about firing her doctor in York after she had to call him at home to convince him that she had developed pneumonia during a episode of neutropenia [that low white blood cell thing], and needed to be treated now! Soon thereafter she switched to the Hopkins hematologist who had been consulting on her case. But no judgments, even when she cops to working with a neutrophil count of 300 (but she won’t tell her current doctors that). Virginia’s in a clinical trial, having run out of all the other tricks in the medical bag. They exchange notes—treatments they’ve tried, treatments they’ve heard about, treatments they can’t have for one reason or another. Dragon ladies, if you ask me, keeping grounded through all this—fierce women, though you wouldn’t know it outside of this peculiar context or possibly their own closest of friends. Men don’t have this ability, this reach, at least not outside of bars or poetry, which is a silent art. Bonding, sharing, not judging, as effortlessly as an Olympic skier coursing down the Grand Slalom. And even more impressive. Toad goes for a ride. I finally get to go in back, after several hours of waiting: it’s usually bloods first, and then the chemo is ordered, and then you are invited back. Even though Friday’s bloods are good for me, I am still waiting a fair bit. “Go back and find a

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chair,” says Jenny (‘my’ oncology nurse), so I ramble round the treatment room and find one on a cubbyhole along the wall. Everyone’s having problems today, with their ports, with their blood chemistry, and with I don’t know what. So I’m sitting a good deal longer in the treatment area, trying to read Tony Grafton on Kepler and chronohistory. One or two techs wander by, wondering what I’m doing in a chair, reading a book w/o an IV hooked up. Hopkins is supposed to validate my DNR orders today; I have drawn up the paperwork, but no one seems to know who has to witness it: a doctor? an attending? a social worker? So the line goes in, w/o that business. Times a wasting. First the steroids and the anti-nausea drug, then the taxotere. Last time, they were very cautious, running it very slowly and only increasing the flow after an hour or so of drip, drip. This time we start at the normal rate. About 10–15 minutes in I give a cough and feel warm all around my face and head. I mean warm! Past blush, past the warmth of the dye they use in the CT scan to ‘whoa, who turned on the stove!’ warm. Instantly, I am surrounded: Jenny disconnects the drip from the line, another nurse holds up an O2 mask for me, someone else hooks me up to the BP machine and puts an O2 sensor on my finger, another nurse runs back to the duty station and grabs 50 cc of benadryl, which Jenny jams into the line. ‘First time on taxo?’ asks the senior nurse. ‘No, second,’ says Jenny. ‘Huh,’ says the first in a Mandy Patinkin sort of way (sorry, the iPod insists on putting on the original Broadway cast CD of Sweeney Todd.) Benadryl is your friend: the heat leaves, we didn’t really get to airway constriction though Jenny insists on referring to a coughing ‘fit’ but I won’t argue the call, and I sink into the somnolence of 50 cc IV benadryl, which feels a lot like a post adrenalin rush minus the cold sweats. After a while, and after checking the BP again at my insistence (I don’t feel normal but I am), she starts up the rest of the taxo at a slow drip and ramps it up over the remaining 45 minutes and the end of the bag. ‘So, I could refer to that as “drug reaction” if asked?’ ‘Yeah, happens sometimes—we’ll give you a 20 cc of benadryl next time before the chemo. And I need to do some research on this DNR so I’ll call you about it.’ Whew, benadryl is your friend, but by the time I walk back to the office, am ready to pack up and go home where I crawl into bed. Ugh, already the chemo fatigue, I think. But it is just the remnants of the anti-histamine working their way through my tissues, and at 5 pm I’m up and peckish, due to the steroids. It’s going to be a while before I am ready to bid good night to ‘the close and holy darkness,’ and call it a day. Meanwhile, I thought I’d write up the story of The Women, and Toad’s Exciting Ride. What to say about all this, beyond the obvious? Cancer treatment is now biological, we say, but it operates in the biological short term as well as the middle term. Middle term: (a) taxotere kills white cells, and (b) hopefully cancer cells as well. Long term the cumulative effects of (b). But the IV bags holding the treatment become an extension of my body, and when the taxotere starts circulating, my histamines go on alert, producing a reaction. Now of course, my histamines have learned to recognize taxotere molecules, so next time a reaction can be expected. So we add an anti-histamine to the bodily

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mix at the outset. What kind of extended bodies are these, anyway, Prof. Haraway, Löwy, Latour?

21 A U G U S T 2 0 0 9

The rhythms of chemotherapy are harder to catch. Radiation was straightforward—in the long walk each afternoon through the length of the hospital to the southwest corner, chugging a bottle of water; down to the basement, find a free changing room, get into a hospital johny, and join the boys in the waiting area outside our room. Monday–Friday, same time, with occasional interruptions (machine problems, problems with the radiation safety door). Then up on the table, aim, fire, and back down the hall to a toilet (all that water!), dress, and head back to work. Chemo has its rhythms—bloods, wait, treatment— day 1–2 up from the steroid boost, day 3–x down from chemo fatigue and chemo head— but they are harder to catch. Tuesday night’s wipeout was from the IV benadryl, not the chemo, whose effects surfaced Thursday.

30 A U G U S T 2 0 0 9 DEATH PANELS? YA GOTTA BE KIDDING. LET ME TELL YOU A STORY . . .

For a long time, I have known that I do not want an extended, medicalized death, and also that it is not so easy to avoid, once one starts the medical grand slalom. On the other hand, when it comes to life decisions, I am a devout procrastinator. Still . . . after three years I finally got around to composing a set of DNR and advance directives, listing all the things my medical caregivers were forbidden to do. I brought it with me to the second chemotherapy—the one with the unexpected anaphylaxis adventure—but no one around knew exactly what to do to get my paper legitimated. I brought it back on Friday, and after a consult with Jenny—‘We need to get a nurse practitioner to go over this with you—why don’t you hang out over there?’ ‘There’ being the waiting area for families of patients who are getting their ports checked. Forty-five minutes later she came back apologetically— ‘well, it’s actually the social workers who handle these, and I’ve called downstairs and she’s waiting for you.’ Downstairs, no social worker in. I sit down to read their version of the advance directives, drafted by the state’s Attorney General, and heavily geared toward people who already know they’re terminal, medico-officially speaking. (Having taken basic logic, ‘All humans are mortal’; ‘Harry is a human’; ‘Harry is mortal,’ I have long been in advance of the bureaucrats and lawyers on this one: ‘we are all terminal’). Anyway, the social worker arrives and I express my desire to use my own drafting. Well, she’s not sure about that and has to ‘consult’ a colleague. Meanwhile, I go back to my office, and modify the document slightly, having picked up from their forms that I need to waive my HIPPA rights for Christine, my decision-maker designate, plus give her a few other rights, like being allowed to stay at my bedside, discharging me from hospital, etc. Shortly after, the social worker calls, and I make the trek from office

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through hospital to her office, where she again has to be paged. We get the document signed and witnessed, after three weeks and the better part of my morning. ‘Now,’ I ask, ‘is this valid throughout Hopkins—cancer center, hospital, etc.?’ ‘Yes.’ ‘And what if I am picked up by EMS & an ambulance?’ ‘Well, you have to give them a copy, so you have to carry it with you at all times.’ ‘What if I have an epileptic fit on the sidewalk and can’t communicate? Is there a bracelet I can wear, like an organ donor or a hemophiliac?’ ‘Well, no, not so far as I know.’ The penny finally drops: this elaborate medico-legal charade is mainly designed to provide legal protection to specific medical institutions, rather than to the rights of patient-citizens to have their desires regarding medical treatment carried out. Your rights in this regard extend only to the sidewalk which designates the legal boundaries of institutional liability. So, if you’re like me, and averse to medicalized deaths (or medically extended life), always travel with a certified copy of your advance directives, in a pack of friends (ideally including a lawyer), and be sure your medical surrogate is available 24/7, and that you have given her/him rights under HIPPA that will allow your EMS/ resident/physician to talk to her/him about your medical condition. Oh, and if you cross any state borders, make sure your advance directives meet local legal guidelines. Death panels? Ya godda be kidding (What’s the ASCII code to symbolize a deep, contemptuous snort?) Well, the neutrophils dropped back down, a little further this time to 600. I’ll bet you think that’s got me worried. No, what has me worried (today) is that I haven’t yet received a statement from Blue Cross regarding my first chemotherapy at the end of July. There are many reasons, including the crumbling Hopkins infrastructure, why this claim might not have been processed as yet, but I won’t rest easy ‘til I know for sure that BC is going to cover this w/o a fight. They should—my understanding is that the drug is FDA approved for this indication, which is more than can be said for some of the other treatments I’ve gotten, and that this is now a recommended course after treatment failure with various forms of hormone antagonists (‘check’), for prostate cancer patients with radiologically-certified bone metastases (‘check’). The treatment is even validated by a pretty good RCT! Still, I keep looking for that statement in the mail. Unoriginal thought for the day, with apologies to Diderot and Marx, and, I suspect, also the Situationists: “La justice ne arrivera pas avant que le dernier bureaucrat serait étranguleé dans les entrailles de le dernier advocat.” Some of you may be wondering about my bureaucrat-lawyer paranoia (DSM 900.??). It seems that I approach these encounters with the well-honed reflexes of someone who did battle with Selective Service for three + years. Thank you, Lewis Hershey, and above all, Leonard Jaffe, my American-Friends-Service-Committee–trained advocate and counselor in the jujitsu of the law. It’s true, you never forget how to ride a bike (or to anticipate the way the tracks of bureaucractic mètis run). Some of us, apparently, have antibodies which fly into motion at the first whiff of a bureaucratic/legal antigen, with all the efficiency and force of our molecular antibodies. Take a memo, Herr Professor Marks.

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31 A U G U S T 2 0 0 9 THE DNR STORY: CORRECTIONS AND A PARTIAL RECANTATION BUT NOT MUCH

So, one of my medical friends points out that everything I was told Friday last about nonportable DNRs is bullshit, and sure enough, she’s right. There is a Maryland law covering this, and if you and your doctor fill out the right forms, there is a bracelet you can get to wear. Apparently, however, no one I spoke to at the Kimmel Center, JHMI was aware of this. Knowing me, you will not be surprised to hear that they are now! But the question remains, if a law is on the statute books, but no one affected by it knows about it, what exactly shall we say about the rights granted by the law? Some of you may say that if I had only looked on the web in the first place, I would have found out about this already. I, however, thought I had a doctor–patient relationship in which the institution took care of those gaps in knowledge which must befall even the most omniscient caregiver. You’d think that, given all I know about institutional memory and organizations, I’d know better, wouldn’t you? OK, I’m still learning about all this. Apparently, if your physician signs the Maryland form, it is binding on all health care providers in Maryland (if they know about the law). And there is an outfit in California (medicalert.org) which will provide you with a bracelet, containing the Maryland medico-legal language, once you provide them with a copy of the Maryland forms and $50+ (annual renewal ~$25). But apparently, the validity of these instructions ends when I go up to Shrewsbury (PA) for prime rib, or down to DC for some kulchah (or Belgian frites). So consider this only a partial recantation of my analysis on Friday. To wit, an exchange with the head of social services, which was alternately apologetic and institutionally defensive. Apparently, advance directives and the like remain something for ‘you and your physician’ to decide on, and it appears as it is up to your physician to initiate this discussion when he/she deems it necessary. (Or you, if you are a particularly uppity patient.) To summarize the lesson so far: yes, you have rights, but not everyone is aware of these. Yes, you have rights but only in certain legal jurisdictions. And the organization’s interest remains, for the most part, more in covering its medico-legal tush than in making you fully aware of these rights. Given that our culture remains profoundly embarrassed (ashamed?) about death, not all that surprising. Thank goodness I have a very menschlich physician who needed neither explanation nor persuasion in order to sign the papers. I just have to find him tomorrow . . .

11 S E P T E M B E R 2 0 0 9

Where to begin? With a non-medical event, time spent in the waiting room, mostly trying to proof-read an article and some Tony Grafton essays, but being distracted by the show on the wide-screen TV. CNN is broadcasting an image of the Potomac River outside of Washington, where apparently the Coast Guard intercepted a boat that had transgressed

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the river’s security boundaries, lobbing a few rounds at it and forcing it to shore. That image, and various puerile commentaries on it (9/11, what was the boat doing there, who was on it?) occupy the screen for a full half-hour. Warhol’s ‘Sleep’ had more dramatic tension. It then emerges from various sources that this was a training exercise, at which point the CNN worm turns. We get a series of commentators (a) excoriating The Government (aka the Coast Guard) for running a training exercise anywhere near the Pentagon on 9/11 and (b) for failing to inform the press offices at Homeland Security and the Coast Guard that it was a training exercise so they could inform CNN news managers!1 The volte-face was astonishing; La société du spectacle indeed! Do you think I ought to tell them that running CNN in the clinic is bad for the mental health of some of their patients, and for the blood-pressure of others? And now on to our medical soap opera segment. Every cycle, as I say, a surprise. Chemotherapy is, for a medical treatment, meticulously planned—far more so than most. Still, it is full of contingencies—patients whose white cell or red cell counts are not up to snuff, and who must cancel; weeks (like this one) in which five days worth of treatments must be crammed into four. Herewith today’s tale of contingencies. I get to the Kimmel Center a little before 8, having enjoyed a good hi-cholesterol breakfast at Jimmy’s in Fell’s Point. I’m the second one to get their bloods drawn, and while my veins are especially fussy today, I am upstairs in the chemo waiting area by 8:20. The nurses are in their Friday meeting, so I have a sit-down and start correcting some proofs that arrived yesterday. 9:00; 9:30 . . . I hunt up Jenny and she says the blood results are ‘good to go’ and the chemo is ordered. (They will not fill the Rx for the drug until they know it will be used.) ‘An hour, maybe less,’ says Jenny, and ‘we’ll start the premedication.’ 10:00; 10:10; 10:18; 10:30; 10:55; 11:15 . . . It’s 11:50 before I go back. ‘We’re short on spaces today—no chairs, no window beds. We’ll put you in this room.’ ‘Hmm,’ says I, ‘and if I have another reaction? I’m not in anyone’s line of sight.’ ‘Don’t worry, I’ll check you often.’ Well, I’m up on the bed and waiting for someone to come put the line in. Open door gets closed by someone passing by and I’m sequestered. 12:00; 12:10 . . . . Jenny pops in a couple of times: ‘They haven’t put the line in?’ ‘Nope.’ About 12:20, we are rolling. The first time the pump beeps, it turns out that it’s run out of battery power. I get down from the gurney/bed, grab the IV pole, negotiate my way out of the room—think of a water ballet with a particularly inept hippo in the back room of a furniture store—and find Jenny, who plugs the machine in. The next time, I’ve got to reach around under the bed and behind with my free hand to unplug the pump, then grab the IV, negotiate it out of the room . . . Jenny?! The third time I become assertive: ‘I don’t think this is working.’ The Miracle Worker finds me a chair.

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Because of a strong histamine reaction to the drug last time, I have been pre-medicated with benadryl and something else to tamp down the reaction. The taxotere is rolling in, and Jenny comes by to take a log of recent medical events. We are chatting when I start coughing and getting flush. Not so bad this time. No oxygen, just an IV drug (not benadryl) and a sensor on my finger and a BP cuff. Two nurses, not six. IV drug works like a charm; histamines be gone. We wait 20 minutes and start taxotere again, running it in a little more slowly. I am running slow myself by this point. Have eaten my two hard-boiled eggs, and a couple of packs of Oreos from the pantry, and have just about finished Grafton’s latest (I think) book of essays. (Next time I will pack for an overnight trip: ‘fall camping is winter camping.’) But all these drugs to potentiate and neutralize histamines have neutralized me as well, and I drift off to sleep for several short naps. Around 2:50 I awake. The drug bag is almost, but not quite, done; my bladder is almost but not quite overflowing. Stop the pump again? Wait it out? Stop? Wait? You know me, never call attention to oneself. The drug finishes, I grab a nurse to turn it off and head for the bathroom. Ah, life is sweet.

THE PART ABOUT OR

Since I spend some time each month in a chemo treatment suite, I have been musing about the organization of chemo work and hospital space. To begin with, architecture. There are four-five adjacent suites laid out in an incomplete hexagon. There is an interior corridor which connects all the suites, allowing patients and staff to get from one to another if there is no direct passage, as there is for some adjacent suites. Important for the ‘circulating’ nurses who perform functions in more than one suite, and convenient for staff and even patients, once they figure out the layout. I am still sorting it out but almost have a map in my head. Still, it’s confusing. The central waiting room has three doors, all of which lead to different parts of the interior hexagon, but connected by the interior corridor! Wish I had a CAD program or knew how to use one but you’ll have to go with inferior verbiage. Anyway—forget the hexagon. What I have to say is about my suite. At one edge of the suite is the nurses station. There are beds along the two far walls, and in the middle, an office partion allowing for 4–5 stations with chairs, for those of us who prefer to sit up. The nurses have a direct view of maybe 50–65% of the patients; for the rest of us, they have to come around to our side of the room to check us out. The layout is not as bad as it sounds— there is usually some staff person within eyeshot, and all within hearing (except in the closed room where I started yesterday). Just yell ‘I can’t breathe.’ And the layout is used intelligently. My first time out, I had a window bed so Jenny could keep an eye out. You heard about yesterday—my good fortune that Jenny was chatting with me when I started to react to the drugs. Still response time is remarkable—especially in the last session with the more severe reaction. The nurses and staff are well attuned to crisis events and don’t miss a beat. So the space works well, the lack of X-ray vision notwithstanding.

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OR. Once upon a time, I was an aficionado of operations research and queuing theory. These are the methods by which engineers mathematically plan highways which are going to be heavily used twice a day, and near-empty at 2 in the morning. And airplane scheduling, and ‘just in time’ inventory and . . . hospital capacity. As you read earlier today, there are practical limits to OR. Units planned for five-day use are a bit pressed during four-day holiday weeks, even if not everyone reschedules their missed day for the same week. Bio-medical events intervene unpredictably: the patient who stays longer because he/she needs a pre-chemo transfusion that day, or the one whose chemo gets slowed down because of an anaphylactic reaction. There is probably a hierarchy of predictability: in-patient units (but not ICUs/CCUs/ NICUs), operating room suites (ORs), emergency rooms, MASH units. Chemo units must be well below emergency rooms but certainly above in-patient units and possibly ORs. But this is a social process as well as a mathematical one: I am reminded of the heart-vascular surgeons who stomped out of a Town Meeting with our Dean whining because they had been having to turn away patients from Arizona—and for all I know, the United Arab Emirates—because of a shortage of intensive care beds to cover their patients post-surgically. Well, probably they managed to fit the UAE folks in . . . So, I must, if I ever get to talk with her on a non-busy day (hah), ask Jenny what input they had into the design of the suites, and how they work/don’t work for them. Other ethnographic inquiries I should pursue, dear readers?

6 OCTOBER 2009 DOLLARS AND NON-SENSE

Some time ago, you may remember, I was getting anxious: I had not heard from Blue Cross about reimbursement for my initial (and subsequent) chemotherapy. Well, the claims did go through, though it took them longer to pay than usual, as well as it might. By the time I had heard from Blue Cross about the first treatment, I had run up$11,753.16 in charges for the first two treatments, plus an additional $9,744.08 for the first use of a radioactive drug used to tamp down bone pain (and maybe also reduce disease progression): total $21,497.24. It’s a good thing they paid; I don’t seem to have $21,000 lying around anywhere. No reason—other than the delay—to think they wouldn’t cover the treatment, which is FDA approved for the indication—the chemo (taxotere) at any rate. The radioactive drug (samarium) is being given off-label. And you wonder how people’s medical bills mount up here. So, let’s see: 10 treatments at more or less $5,800 per treatment, that’s $58,000. We won’t count the small change of weekly blood tests, any possible hospitalizations for infections or other complications in my future, or even the ancillary samarium—which I will get three times, I think—for another $29,000. Actuarily, that $58,000 buys one 3–4 months additional life, though one hopes for more in this particular case. What’s it worth to you, fella?

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What’s it all for—I ask not existentially but as an accountant (or the Congressional Budget Office) might. Well, that’s a bit of a state—or rather a non–state—secret. A few years ago, my insurer decided to stop telling its customers what exactly it was paying for. Used to be, the ‘Explanation of Benefits’ would say ‘amputation—right leg’ or something like that. Now it’s just ‘Hospital services.’ If you want to know what they are paying for, you have to file a written ‘privacy waiver’ each time. Why? Again a mystery: they are apparently protecting my ‘privacy’—not to mind that the clerk I call at the 800 number can see exactly what I have been charged for. I can’t, without I make a written request. I’ve been around the ropes on this one a couple of times already with Blue Cross, and short of writing the Insurance Commissioner of Maryland, have given up on a coherent and believable account of the policy. I have been thrown various lines, which in turn are in the scripts they give their phone operators, and none of which has any basis in law (or possibly even reality). Still, I’ve learned the drill: file a written request and you get a certified letter—trip to the post office required—detailing the charges for a specific visit. Yesterday, the statement for my initial treatments (7/23 and 8/18) arrived, and it was a little less than forthcoming. As I expected, the lion’s share of the bill was for the chemotherapy ($5,194.80 of 5,799.28)—the rest for tubing, supplies and a mysterious $0.20 for some additional drug. I would tell you more, honestly I would, but here is where the system breaks down. I assume that the $5,194.80 is for taxotere, but what it says on the detailed, custom-made, at your special request “summary of services” is “Y6360—Drugs requiring detailed coding.” I assume that would be the taxotere rather than, say, the saline or dextrose solutions they give you with the drug, but who knows. Blue Cross obviously is not telling. What is it about taxotere that makes it so expensive, you might be wondering?2 Hard to say, but Willie Sutton might have some idea. Apparently, in Australia it goes for $18,286 per treatment – depending on what the South Australia Sunday Mail means by “treatment,” that is either a lot cheaper or a lot more expensive than Blue Cross allows. In the UK it goes for £7,000—at the time (2006) around $14,000 or more. A lot less than $58,000 (or $51,000 if you like), but then again, the UK NHS and the Australians were not letting men have the drug for some time, given how little the drug offered the men. That brought a series of preposterous but politically effective charges of gender inequality—the drug is approved for breast cancer, but for that condition, it appears to produce real remissions. Taxotere has been on the market since 1996 (for other neoplasms), and was approved for prostate cancer in 2004. I couldn’t sort out the patent history, nor did I find anyone who did it for me. It’d make a nice study: drug companies as rentiers, aka ‘monopoly rents.’ As I say, Willie Sutton would understand. It’s actually a bit surprising how hard it is to find out how much the drug costs, much less why. I suppose if one dug deeper than I did into the trade press, one could find out. Maybe. Meanwhile, and until I reach the lifetime benefits cap on my insurance, all this costs me is around $1,500 a year, which is the annual limit on my out-of-pocket costs. To all those who have helped to underwrite my oncology treatments by paying their health

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insurance premiums while staying (relatively) healthy, my profoundest thanks. To Sen. Baucus and President Obama, my deepest contempt.

3 NOVEMBER 2009 ALICE’S ADVENTURES IN MEDICAL LAND: OF BIOLOGY, ECONOMICS, AND SAMPLING FRAMES

One of my treatments is a drug called samarium, a radioisotope administered by Radiation Oncology. Samarium goes to the bones, and does various mysterious things to the lesions there. Medical Oncology thought it was time for another dose of it, and so I arranged with Radiation Oncology to get it the day after my fifth chemotherapy treatment, per the instructions I was given. This was all supposed to happen during the week of October 19. Turns out they do not like to give samarium to patients whose neutrophil counts are below 1,500; at the beginning of the week, I got an e-mail saying they didn’t want to treat me because when my neutrophils were last measured, the previous Friday, they were still low. The problem, it turns out, is economic. Samarium is a very costly drug; it has to be ordered in advance (from the nuclear reactor?) in customized doses. As the chair of Radiation Oncology and earlier in this disease, my principal physician explained: If my neutrophils didn’t rebound by treatment day (Friday), Radiation Oncology was out around $7,800 (or whatever the cost is to them of this rather expensive treatment). If this had all been explained to me, of course, I could have had my bloods drawn after the weekend, by which time, in all probability my neutrophils would have crossed the threshold. And as it happened, I couldn’t put the whole sequence off a week w/o interfering with a long-planned lecture at Ohio State. So, always remember the sampling frame, and make sure you know the management routines your physicians work with—their nurses operate in silos, each knowing what happens in their sphere but not outside it. Never knew continuity of care was this complicated, eh? Not to worry, I’m on top of it now. We are going to try this all again in the next round of treatment, when I have made sure that my bloods are taken at the last possible moment to order the treatment. Sure am glad I’m not sick or something—no telling what might slip through the cracks.

6 DECEMBER 2009 THE COSSACKS ARE / ARE NOT / POSSIBLY MIGHT BE COMING. WHO ARE THE COSSACKS, ANYWAY?

My doctor has decided to give my hardworking hematopoietic system a break, possibly because of the plunge to 260 last time around (the first time it went below the critical value of 500). Or maybe it’s just the difficulties of holiday scheduling— my next treatment would fall due either on Christmas or New Year’s. In any case, I get an extra 7–10 days’

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break, with my next treatment scheduled for January 5, 2010, my 63rd birthday (whoopee!). Which should allow me to go up to New York for a few days of museum touring either before or after Christmas (assuming we can find an affordable room at this late date). Let’s hope so: my eyes are eager. (Anyone who wants to meet us at the Neue Gallerie or the Moma Bauhaus show should book time now—we’re either going up the week before or the week after Christmas.) Doctor K and I also began discussing ‘what’s next?’ Friday’s treatment was cycle 7, and we are going—I was corrected—for nine, not ten. They won’t be able to interpret the scans used to evaluate the treatment until late in the Spring—April/May maybe. Meanwhile, he’s floated the notion of a phase 2 trial studying a monoclonal antibody meant to unleash the immune system against the neoplastic (cancer) cells. Apart from the relatively poor track record of monoclonals, the idea of an unleashed immune system doesn’t strike me as a necessarily good idea, to say nothing of whatever monitoring costs go with the study. But we’ll leave those negotiations to a reading of the protocol and January discussions. While I sort out treatment logistics and my spring-summer lebenswelt, the health care reform (sic) process churns on in Congress. At this point, I figure the only ones paying attention are the folks who are putting off needed care, and the many interested parties whose economic and/or professional futures might be affected. Plus a few vicarious onlookers from the left and the right, outraged or motivated (as you like) by the exclusion of abortion coverage or other maneuvers. I confess, I haven’t been paying much attention to a 2,000+ page bill whose details change daily. Like most of the country, I am waiting to see what we end up with, after the Senate, the Senate–House negotiations, and the final bill’s details—if there is such a thing as a final bill. Still, I confess that I was particularly irritated at the latest Democratic scam—to raise money for the bill by cutting back on home health care benefits under Medicare. Granted, there’s a lot about Medicare that needs fixing, and not very much in the bill to do so—some promissary notes in the form of another Commission to look for Medicare savings. Still, a measure which will reduce the immediate fiscal cost of the bill while almost certainly raising the real costs down the road—all those individuals who will now end up with more hospital and nursing home stays—strikes me as a particularly cynical maneuver. The sort of thing one expects from the other party when they are in charge. I might actually get off my duff and write my Senators and Representative, for all the good that will do. OK, loves, its back to my day job—reading, teaching and managing my doctors. Happy Holidays to all and a very Happy New Year.

8 J A N U A RY 2 0 1 0 RADIO FREE HARRY SIGNING OFF

For the most part, contemporary medicine (physicians, practices, routines) is aimed at mastering, or at the very least managing disease. Sometimes they rise to the occasion

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and focus on controlling treatment. Visited my oncologist on Tuesday, and by the end of the visit he had decided that Tuesday’s chemotherapy (# 8) would be my last, at least for a while. A combination of patient factors—I strongly articulated my desire to avoid medical dependence as long as possible—and biology—the treatment has been hitting my red cells hard of late, and apparently there is an outside chance of additional treatment producing bone marrow failure which at this point would be, as they say, counterproductive. So, I am currently negotiating the iatrogenic effects of Tuesday’s treatment; the nurses and I are a bit triste about my imminent disappearance from their weekly life. They’ll get over it but what will I do on Fridays once the monitoring for the current round of treatment ends? So much of my life since July has been structured by the cycles of treatment, monitoring and restricted activity that it’s a bit hard to accept. Apart from the suddenness with which the script was rewritten, there is the delightful prospect of a temporarily chemo-free life. To judge from my brief experiences after Christmas—ten extra, blissful, restorative days of non-toxicity—that’s going to be wonderful, once it comes. In terms of prognosis, it’s a watching brief at this point: monthly clinic visits, reporting in if any symptoms appear, and waiting ‘til late spring to do bone scans and assess the impact of taxotere plus samarium more definitively—bone lesions (more/bigger; lesions—static; lesions diminished in size and number. Check one). And figuring out the best (most pleasure-producing) use of my time over the next 4–5 months, or the parts of it not already committed to various university and professional activities. So do not expect any future bulletins in the short term; will keep you all apprised if something exceptionally good or bad happens. And thanks so much for all your responses to my musings and experiences of the past six months.

22 JUNE 2010

On the one hand, I haven’t been sending out any ‘chemonotes’ for a while. On the other hand, I find the existential aspects of (my) disease boring, and I haven’t had much to say. On the third, or gripping hand, to invoke the sci-fi author Larry Niven, sending out a collective bulletin is more efficient—there is a reason for the press briefing, after all. So. Where we are/have been. Chemo ended in January, and it took a while before they were willing to order new bone scans (which are hard to interpret in the few months following chemo). And for the most part, though the biomarkers (PSA) continued to rise, I was holding my own through the spring, in terms of activity, weight, etc. But fatigue—related to disease and not treatment—has been recurring at intervals this spring, and we are now in the end zones of symptom management, having left the City of Medical Hope, even though I had to drag my oncologist out of there. So, steroids and other tricks to deal with fatigue, and the promise of other tricks to deal with other manifestations of disease (e.g., anemia, bone pain, and other zones of disease progression we have yet to visit).

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2 5 J U LY 2 0 1 0

In the late nineteenth century, various health reformers—some physicians among them—believed that the accumulation of animal protein in the body was a profound danger, and that bodies should be purged of such matter before accumulated ‘poisons’ could harm it (cf. Jim Whorton). The advent of bacteriology brought science and more physicians into the fold, as Barbara Rosenkrantz has shown: animal matter in the gums and gut were a dangerous source of bacterial toxins which needed to be eliminated before the patients sickened and died. Nowadays, our own attentions are focused far more on understanding and manipulating the molecular pathways of disease; perhaps, as the following tale suggests, we need to be more cognizant of the complex links between the musculo-skeletal system and the gut . . . Saturday July 17th. While the avalanche of ‘read and advise’ has slowed somewhat, I have not discouraged everyone and the list of overdue tasks is growing higher. Go down to the office to do a promised review for Social Studies of Science, of an intriguing article exploring the ways in which ‘translation medicine’ is destabilizing long-established relations in therapeutic research. I heard a version of the paper earlier this spring, and it doesn’t take beyond the early afternoon to send a combination of technical comments and a few conceptual modifications of the argument, and upload it via Mss Central. That done, Irina, my daughter who is hanging out here this summer, working on her stuff and helping me out, and I do a loop to MSE library before heading home around 2. Earlier in the week, my oncologist had discontinued one IV med, which looked to be doing more harm than good, and started me on a new regimen of oral cytoxic agent plus an accompanying steroid. The new regimen was unusual in leaving me foggy headed by late morning, and I was planning to talk with him about this at length. Anyway, this is all background, possibly irrelevant, to a feeling of bone pain developing by evening, for which I began taking NSAIDs (mostly tylenol) without much success. The rest of this story is best understood by knowing that I was having two kinds of pain w/o sorting them clearly enough in my own body or mind—one, possibly, an appearance of cancerrelated bone pain which I keep awaiting; the other, muscular tension (lower and upper back), which, I eventually figured out, is a distinct and non-cancer connected phenomenon, easily aggravated by fear, anxiety and my body’s own habits of somatizing emotions precisely in these muscle systems. Anyway, Saturday was a largely sleepless night with the NSAIDs doing little to relieve the pain and me progressively distressed. I turned Sunday AM, sometime, to the bottle of oxycontin I have been carrying around for a year, in case of serious cancer pain, but hadn’t used. It’s a nasty drug, and I was an inexperienced (and already possibly deranged) user, which accounts for what follows. Oxycontin, even at low levels, has two relevant effects other than pain relief. The first is a kind of hashish-like disordering of cognition—which can seem like a relief in taking you out of pain—but is very rapidly stupefying. The second is constipation, which I knew about but was not taking into account, in

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efforts to escape the pain. I was taking oxy only at the extended intervals (4–5 hours) suggested on the bottle, but did not then realize how imprudent or ill-advised that was. One needs to be more experienced in using this drug before one can use it intelligently. By Sunday night, I had discontinued it but the damage was done ; my intestines were locked up like quick drying cement. The events of the ensuing week are narratively complex; for my purposes here, I focus on the psycho-physical effects of the muscles. You all, presumably, have strained one time or another to force a bowel movement, using the muscles of the lower back and abdomen to aid the gut. Well, sure. Something else happens, I think, when the intestines are frozen solid—each attempt to initiate or aid peristalsis simply frustrates the back muscles which then start radiating contractions and pain up and down the back. At least in my case. The harm in all this is not the pain (which is not so bad and which I ultimately figure out how to distinguish and manage). Rather, it is the subjective sense, early on in the week, that this is now the beginning of cancer’s end—I lack either the strength or the will to get out of my low-lying Ikea bed unassisted. I spend lots of time flopping around like a turtle, trying to figure out a strategy for rising. Rina, in the early days, must come to the ring of the phone to help me out; I do my ablutions or drink or meds or whatever, then sink back into a semi-dozing state where, initially, all I can do is obsess unendingly about this blog and about all the undone things I meant to do to get the house, finances, and job-things in order. Given that I cannot put two thoughts together, that would be a trick. And weakness, moral or physical, aside, a glimpse at the various unhealing bruises on my arms does not encourage thoughts of continued vitality. I spend much of Monday at the Kimmel center, where Nurse J and Oncologist K have written me into an already overbooked schedule. Along with an IV dose of steroids, which is revivifying, J works a plan for the constipation. As with all else this weekend I am clueless—Rina has been helping me out of bed, driving me to the Kimmel center (I feel as if I can’t possibly make the walk from my end of campus to theirs, which I have been doing all along these last four years), keeping track of what is said. The Kimmel philosophy, or Dr. K’s, with regard to laxatives is incremental, properly conservative—you can do as much harm as good by starting out aggressively, losing lots of fluids, producing electrolyte imbalances, and so on. All this is left unsaid, but I endorse the principle—primum no nocere. Start Monday and continue Tuesday with OTC laxative # 1; Wednesday start the next more powerful OTC remedy. By now I can aid this by consuming melon, grape juice, and trying some bran, although none of it in amounts to keep a sparrow alive over the long run. I am a bit less dozy but still exhausted: nothing like deep or uninterrupted sleep since before the weekend. Dozing most of the day, I am hardly inclined to sleep through the night anyway. Coping with the muscular tension and pain calls for activity (heating pad, intensely hot showers, tylenol), which must be done immediately to have an effect. I’m not sure how much sleep I get overall since the weekend, but even with the emotional/cognitive effects under some control, I am pretty insane with sleep deprivation.

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By Thursday I e-mail/call in: nothing in the lower forty—what’s the next increment? They call in a prescription laxative, to be taken every two hours until a bowel movement results. Start at four, then 6 then 8, miss 10 pm but by 11, the lovely stuff has started to do the job. I am resurrected! Though now two days out, I still have yet to resume anything like a normal sleep/eat routine. Much better, nonetheless, than lying bedbound contemplating the end stages of prostate cancer. Dr. K says we don’t know what kills patients with metastatic prostate cancer—nothing in the bones does it. Maybe it’s constipation . . .

LESSONS & IRONIES

1) All along, my concern has been avoiding some medical intervention which ends up leaving me not in control of events. And here the problem ends up being constipation!, caused by an imprudent, injudicious use of oxycontin which I initiated. Adding irony to injury, my only bowel concern for the last four years has been handling those occasional episodes where my bowels are intensely ready to unload, where my control of the last 4–5 inches of the colon is not what it used to be, and where I am struggling between cramps and embarrassment while I try to make it to a toilet. It’s happened infrequently enough, but still, go figure. 2) To paraphrase Philip Larkin, ‘they f--- you up, your soma and psyche.’ Everything I wrote here is probably generally true, but it’s true that my psyche has had more practice than some in rewiring the emotional–somatic connection. 3) To return to the beginning, we don’t think much more about the more superficial wiring of the muscles and the gut—at least not off the post-surgical floors. Our attention is on the molecular pathways which lead to the production/reproduction of disease. Perhaps it is not only our concepts of disease which are occasionally layered with multiple archeological layers, but that our bodies themselves operate at more levels than the molecular. Trivial, I know, but seemingly very pertinent at the moment—sure am glad that USP formulation of a laxative is still on shelf in the dispensary. Anyway, folks, I’m (slowly) on the mend and might be back to something like normal, importuning you all with more consequential missives beyond these latest reports from the field. Eventually, anyway.

25 A U G U S T 2 0 1 0 UP AND DOWN; OR, “CAPTAIN KIRK, WE APPEAR TO BE IN SOME SORT OF STRANGE E-SPACE; NONE OF OUR NAVIGATION EQUIPMENT SEEMS TO BE WORKING . . .”

As some of you know in more detail than you would like, this has been a rocky summer for me. Over the past two weeks, I have been experiencing daily fatigue, impaired ability to concentrate, work, or for that matter, on days like yesterday, to put one foot down after the other. Despite feeling a bit ‘low energy’ over the weekend, I let things ride until

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Tuesday AMs labs and appointment with the oncologist. By which time, I was seriously anemic—RBC 2.27, Hemoglobin 7.2; platelets 36—for those of you for whom these numbers have meaning. (For me, it was more the feeling of being a stumble-bum walking over the clinic.) Anyway, long story short, they gave me 3 units of red cells yesterday, and today my nail beds and knuckles look as pink as when one goes for a long walk or mild run in fall. (When I woke up and looked at my fingernails and knuckles, I thought I had some strange version of roseola or scarlet fever.) Blood is your friend (though one’s friends remain the true medicine in all this). So . . . It appears most likely that the anemia and fatigue is a sign that the neoplasm is beginning to consume/impair bone marrow. Transfusions are a sort of maintenance therapy—wonderfully restorative but not therapeutic. Unlike my first transfusion, the effects of the one before yesterday’s lasted only two weeks, by which time the anemia was far more severe (lower values, etc.) than at any earlier point, and they upped the ‘dosage’ from two units to three. As I have suggested to some of you already, we will be playing this phase out improvisationally—depending on how long this transfusion lasts, they may try a reducedschedule version of the last drug I was on to see if that can slow down the neoplasm. So, we are back in the terrain of medium / long-term certainty (no cures) and short-term uncertainty, except that the time horizons for me are more like ‘will I feel this good at 3 pm?’ and for them, ‘come in next Tuesday and we’ll check your blood count again.’ In terms of information, I can’t give you better than this; as for me, I’ve got to go in and clean up the onehanded typing/writing I did yesterday for my September 1 talk on the ‘lessons of Avandia.’ I am hoping to see some of you soon, and almost all of you October 30 at ‘harryfest’ but will be under the radar for a while—as soon as ‘avandia’ and slides are finished, I’ve got to go back to revising a paper for the Anthropology Department on ‘a historian’s vain quest for social theory.’ And then, I promise, no more talks or papers for a while . . . Really, truly . . . I am adapting—ordered the roller version of my L L Bean book bag yesterday, so me and the second-graders will be schlepping our laptops, papers, and books on the sidewalk, rather than on our backs, an effort for which I, on days like yesterday, no longer have the energy. à la prochaine

2 4 –2 6 N O V E M B E R 2 0 1 0 ILLNESS NARRATIVES—HM AND THE ETHNOGRAPHERS

Those of you who have read earlier versions of my “chemonotes” know how much I despise personal illness narratives, both in the general sense and more specific, the sort of drivel Dana Paulson, an NYT writer, invites us to share about his “experiences” with prostate cancer. Who cares, Dana, I have muttered, and certainly, who cares, Harry? Yet it seems to me that the time has come to explore the personal. But to begin with, the biological. As I understand it, given the failure of various standard therapies, we are now largely in a situation where the neo-plastic cells are destroying not simply bone but bone marrow where the body makes blood cells. This produces

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periodic anemia, for which the only temporary intervention is periodic transfusions of red blood cells. (I don’t know why this whole biological frame is so difficult to understand. I find myself explaining it again and again, largely to people who can’t take it in. And while I hadn’t given it much thought until I got sick, it does not seem to me a very complex notion.) My oncologist operates, in the long run, on his clinical experience of other patients at similar points in disease, which is that ultimately, even the transfusions will fail to produce clinical and cognitive benefit. Nonetheless, to interpret any particular episode he relies in part on my reporting of responses to the transfusion; in part on a set of decisions (of late) to devote more effort to managing or reducing particular side effects, such as allowing me to take regular tylenol to manage bone pain levels (still minor) which interfere with my sleep; in part our extraordinary relationship in which he defers to MY priorities about the limits of medical/therapeutic salvage in this particularly case, which is why I LOVE my oncologist, and why I have to thank Steve Goodman for intervening at a crucial point to get me on my oncologist’s patient list, rather than that of someone whose main impulses are technical and interventionist. Whatever his impulses, my oncologist has been willing to defer to my existential priorities. Which brings me to the (unavoidably) personal. Here is a brief time line, edited somewhat to focus on the illness trajectory which currently preoccupies me. Jan, 2010: chemotherapy—the last standard treatment ends; April/May 2010—bone scans pronounce it a failure; May–Aug 2010—still high functioning; September, 2010, holding my own but with effort; late October, increasing deterioration. Which brings me to my illness trajectories. When experiences begin happening, I do not know when/how to interpret them. One reading, to which I am inclined in my paranoia, is that event A is the start of a straight downward cycle. In September, I am doing fine, giving seminars for the clinical trials group and then for the anthropologists, texts for which talks are on my website, for as long as that lasts. By October 30, when 140 people (former students, colleagues from UK and North America and one from Rio, where she is temporarily based) show up for ‘harryfest,’ my performance is sustained mostly by a transfusion plus some IV steroids given to me beforehand. The result of which is that post facto, I seriously collapse, mostly from the after-effects of the drugs, and somewhat from my mis-management of energy at the event itself. That plunged me into serious disorientation, to the point of incoherence, in early November; I am now writing this at the end of the month. So one line here is of a line, existentially observed, of heading downward toward the bottom. An alternative illness trajectory, which I favor, is of a spiral but a spiral which, while headed downward (less cognitive and physical capacity) in the long run nonetheless experiences updrafts (recovery of some cognitive and physical capacity), which makes the interpretation of any one sequence of events more difficult. So, despite being plunged into incoherence post ‘harryfest’ (October 30), I did, sometime toward mid-November, begin to recover, both cognitively and physically. There were, nonetheless, some losses I cannot recover: short-term memory, ranging from ‘did x happen a week ago, or yesterday?’ to ‘did I take this pill at 11 am or did I just think I took it?’ On the other hand, my

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ability to intellectually focus on some problems has clearly improved since midNovember. So, am I headed ‘down’ (short-term memory loss, need to use a cane and, ideally, a minder to make sure I don’t fall; time–date disorientation) or ‘up’ (increased ability to cognitive focus and also, apparently, less objective need for a cane to get around)? Who knows? There are clearly illness trajectories at work (thanks, Anselm Strauss and disciples), but how to interpret them is more difficult. JUMP CUT TO THE SOCIAL WORLD(S)

Yesterday, I am in for transfusions, but owing to some screw-ups, the appointment is not in the system when I arrive at 7 am for the lab work, which means that it is noonish before the transfusions get started and 3–4:30 pm before we are done. I give you this as background just so you know this is a longish day in which both events and readings of these events emerge. From 8-ish (a.m.) to noonish, I am in the oncology outpatient waiting room, whose aisles are not really wide enough to accommodate two of the overly wide wheelchairs some of the sicker patients (including me) are using. Space and bumps. I guess I have gone through life with a clear sense of the physical space around me, and made every effort to avoid collisions—the product, no doubt, of time spent in Manhattan weaving and bobbing around tourists. Equally clear yesterday was that while some patients and their minders are willing to engage (with eyes, steering, etc.), many people are just as happy to bump into you and offer a “sorry” or not even that. Since I feel like glass that could shatter at any moment, I do not take the second group (who outnumber the first) kindly. They do not imagine the insides of the body of those we encounter in the waiting room—maybe when the outside picture resembles the inside (skull damage, or even baldness) but not in my case, where the inside vulnerabilities (bones painful to touch) and interior imagining (glass shattering) are invisible. Race, class, and the waiting room. There are a couple of working-class African-American women there with an infant around 12 months (my age sense re babies is no longer precise)—the most objective sign of their social and economic status is the decision to head off in search of a pay phone, as they have no other means (the ubiquitous cell phones) of reaching the people they need to talk with. They return. The kid they are with has some kind of bad cold and intermittent diaper needs, and it is protests (from the child) about one or the other that force their attention on the child. Until . . . I play my game with small ones. I open up my eyes and brow as wide as possible, and fix my face in a grin (child developmental psych 101). The child cannot move her eyes away from me—forgotten the poop, the head cold, etc.—her gaze is transfixed on Harry (they are across the wheelchair aisle from me on a diagonal). Baby (not defined by race or class yet) and I play the eye game, until eventually, one of the minders moves the angle of the wheelchair so that babe and I cannot make eye contact. Gotcha whitey, honkie, or whatever the current vernacular fifty years out is for the likes of me. Disability. Of course, the ‘disabled,’ marked by wheelchair or cane or the like are often invisible. The streets around Hopkins medicine, especially near Monument and Wolfe, 694

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have long been full of African-American patients, disabled by the complications of weight and/or disease. I can’t say as I ever paid much attention, other than to occasionally play with notions of social epidemiology. But as individuals, invisible, and yet their disabilities were far more visible than mine—marked on their bodies, on their pace, and so on. Inside. So finally, I am inside, in a chair, invisible from the nursing station, hooked up to the drip pump and alarm which alerts staff to the fact that something is done, not working, etc. But since all the pumps sound alike, it can take a while to sort them. On my left, in two of the stretchers against the wall, are the really sick patients—people with serious complications of disease and/or treatment. They are the nursing priority, as they should be. One fellow, immediately on my left, is doubled over much of the time; does not get much attention. Catty-corner, towards the exit, is a woman suffering—I am pretty sure— from complications of treatment. She is nauseous, has serious rashes on her body; and her doctor is trying to decide whether to admit her or just to alter some of her meds, being used to handle the complications of treatment and see if she can slide through ‘til Friday after T-day. The doctor explains some meds she might drop, some she might pick up to meliorate her nausea—these are not therapeutic meds, but meds to deal with complications of treatment. The MD does explain his thinking, but much of what he says seems jargon-laden. Her partner/husband is trying to sort out what to do, especially about what will / will not be covered by insurance—try getting that resolved two days before Thanksgiving. The nurse (my nurse, as it happens) is trying to translate in the spare moments when the physician is not at the bedside, and to find out what the patient, and especially her partner, need to come up with a decision—what are their concerns? At the same time, when the MD is at the bedside, she must not challenge him. It’s just that the MD’s capacities and concerns, and the patient’s, along with the nurse’s, do not necessarily converge. Or so I am reading things. It’s all I can do to grab the nurses’ attention in a spare moment (by shouting across the room) to get permission to unhook the pump to get to the bathroom before I pee and shit in my pants. I get permission, but not by being patient. I am somewhere far down the list of sicker patients, who rightly get priority. Coda: Triage. I write this over Thanksgiving weekend 2010; a great deal has been going on in my life, medically, practically, and emotionally. It is possible that I have left out a great many additional layers of social history and its ramifications, but I can’t reliably say. So I add this amendment for what it is worth.

N OT E S

1. Implicit here, of course, is that CNN can only get their news from press offices rather than investigating a non-story before running it. Streaming news = we get you the news before it never happened. 2. To those of you who follow these sorts of things professionally (or avocationally) I should say that the ‘drug cost’ may be entirely fictive. It’s hard to imagine that they are paying all those nurses, phlebotomists and oncologists on the roughly $800 left once the drug cost is covered.

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39 THE EXPERIENCE OF DEATH IN A DUTCH NURSING HOME On Touching the Other

Roma Chatterji

Mw. Overbeek is admitted from home in the pre-terminal phase (pancreas kopra metastasis operated last year). From this summer major deterioration, since two months largely in bed. Has had home care—2 daughters involved—neighborhood nursing and project terminal house care. The daughter chiefly responsible for coordinating home care has developed a bad back. Mw. Overbeek looks thin and exhausted but is still in denial—“in the bargaining phase.”1 She is clinging to life—has had several relapses when the family felt she was going but her eyes are still alert. She seems to be exhibiting all the different phases of mourning (see Kübler-Ross)—especially anger, depression and bargaining. She has worked hard all her life—twice married, twice widowed, 4 children. Given her condition her time on earth should be short. Cornelie Mous, 28 August 1986

This is an extract from the case file of a terminal patient who was admitted to the verpleeghuis (nursing home) Regina Pacis, in Arnhem, the Netherlands, in the first month of my fieldwork there.2 I had just begun as an “unofficial trainee,” attached to the socialwork section of the medical and paramedical department. Since the social worker mediates all relations between the verpleeghuis and the wider society and performs a crucial function in the admission and discharge of patients, it was felt that this would be the best place for me to get a sense of the work culture of the institution and the kinds of patients that it dealt with.3 In the weeks that followed I came to know Mw. Overbeek more intimately since I was appointed as her bereavement counselor. (The Dutch title “Mw.,” an

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abbreviation of the Dutch word mevrouw, corresponds to the English “Mrs.”) It was through my interactions with her that I had my first introduction to death and dying in the Netherlands and the ways in which professionals such as nurses and other medical personnel relate to the dying process.

M E D I C A L I Z AT I O N A N D T H E DY I N G P R O C E S S

Despite the growing significance of the hospice movement in the United Kingdom and the United States, at the time of my fieldwork in the mid-1980s, palliative care was relatively undeveloped in the Netherlands (Jenssens, Ten Have, and Zylicz 1999). There were few specialized hospices for the care of dying patients, so that institutions such as the verpleeghuis that were primarily meant for the care and management of severe chronic diseases in old age came to include some of the functions of a hospice by default. The hospice movement, as is well known, dates back to the late sixties in the United Kingdom and emerged out of a growing dissatisfaction with the impersonality of care given to dying patients in hospital settings. The concern was to provide social spaces where the needs of the dying and their families could be met and where patients could regain control of the dying process. Cicely Saunders and Elisabeth Kübler-Ross became the leaders of the “death with dignity” movement, as the hospice movement is popularly known. The proponents of the movement were also concerned with inadequate pain management in terminal care. Patients were often left alone by the medical staff and had to endure constant pain, or were so heavily drugged that they remained either unconscious or semiconscious until they died (Siebold 1992).4 In their pioneering work on the “dying trajectory” in hospital settings, Barney Glaser and Anselm Strauss (1970, 1968, 1965) develop a powerful critique of the medicalization of death, using detailed case studies to show the ambivalence of hospital staff toward dying patients because of the unpredictability of the terminal trajectory and their inability or unwillingness to give credence to their patients’ complaints of pain and the need for its control. More recent studies on palliative care and euthanasia in the United Kingdom and the Netherlands (Lawton 2000; Pool 2000) have focused on conceptions of the Western self through an analysis of dying patients and the negotiations around control over the time of death. More specifically, Abraam de Swaan (1985) and Anne-Mei The (1997, 1999) in the Netherlands have focused on cancer patients, describing the often “unrealistic” optimism of such patients as a consequence of failure in communication between doctors, patients, and nurses (The 1999). Doctors often frame their communication with patients in the “short-term perspective,” restricting themselves to information about the current phase of the illness and thereby sustaining the “system of hope” that underpins the ideology of the medical institution (de Swaan 1985).5 It would seem at first sight that the verpleeghuis as an institution that specializes in the care of geriatric patients suffering from severe impairment should be more professionally equipped to deal with the ambiguities surrounding the dying process. But even though

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verpleeghuis patients rarely live long, the institution is characterized as a place of hope. Still, the early 1980s might be regarded as the time when a new self-consciousness about the dying process was beginning to emerge in verpleeghuis care. Cornelie Mous, the social worker attached to Regina Pacis, had attended a course on the subject conducted by the eminent psychologist Elisabeth Kübler-Ross, and the latter’s model of the bereavement trajectory informed her interactions with patients and their families.6 For nurses who did the physical work of care, the death of a patient was experienced as an unexpected, enigmatic, and often distressing event that could not be fitted into a trajectory of the dying process. In this chapter I will discuss the soteriological concerns that suffuse verpleeghuis practice, describing some of the events that “irrupt into awareness,” to use Byron Good’s (1994) felicitous phrase, disturbing ward routine and turning attention to the moral dimensions of illness, suffering, and the fear of death. Medical knowledge, as Good argues, is not just a medium of perception but also a mode of engagement with the world, for it is deeply implicated in the way societies think about finitude and its relationship to the human body. Anthropology is also deeply concerned with the temporality of being, with corporeality and the encounter with death. In retrospect, then, it was at this intersection between forms of knowing in anthropology and medicine that I was made aware of the significance of different sensory modes through which boundaries between self and other were maintained in the dying process. I take up particularly the significance of touch. The place of touch in Dutch society is ambiguous. Within the private domain of the family, touch is a gesture of intimacy, but within care institutions like the verpleeghuis, relationships are guided by the norms of stranger sociability based on respect for bodily boundaries even within the intimate bodywork that caring for patients with severe illness involves. Touch is strongly regulated through both explicit and tacit norms within the verpleeghuis through a bureaucratically organized nursing regime of “bed and body” work. Though many scholars maintain that medical institutions deal with the dilemmas posed by death by routinizing it (de Swaan 1985; Glaser and Strauss 1970, 1968), my experience in the verpleeghuis shows the opposite. I found that death was an event that disrupted the norm of stranger sociability and brought religious notions associated with touching the flesh of the other as a mode of compassionate responsiveness to the surface. Such affects are otherwise hidden behind the secular medico-rational framework within which care is organized. In the section that follows I will present three vignettes to explore the phenomenology of touch and the experience of death in the nursing home.

T H E WA R D A S A DY I N G S PA C E When Christ was facing death in the Garden of Gethsemane he said to His disciples “Watch with Me.” This is the attitude of mind and heart in which we must approach the dying so that we may try to learn from them and give to them. CICELY SAUNDERS, 2006

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“I believe we are getting a nice, easy revalidation patient, Cornelie,” said Ellen, who was in charge of the Linde (lime tree) ward, sarcastically. “We [the nurses] believe that a terminal patient needs counseling—she should not be left alone.” Ellen was alluding to the chronic shortage of nursing staff at Regina Pacis. I had been at Regina Pacis for less than a month, and Cornelie Mous was my official mentor. I went with her to work meetings in the verpleeghuis and made patient visits in hospitals and old-age homes. After an initial period with the social work department, I moved to the wards and participated in the nursing care of both psycho-geriatric and somatic patients. Cornelie had recently completed a course on the bereavement process, as I mentioned earlier, and she was convinced that as an anthropologist from India I would have had some experience with death. She immediately offered my services as bereavement counselor to Mw. Overbeek. I had accompanied Cornelie on several home visits to Mw. Overbeek after she had been discharged from the hospital earlier. Mw. Overbeek was fully aware that she had only a little while left to live. Her two daughters took turns in caring for her during the day, and they were both present on the day when it was finally decided that she would be moved to the verpleeghuis. Mw. Overbeek lay on a day bed in the living room. The daughters spoke in a matterof-fact way about her condition, about her operation the February before, her two relapses since then, and the arrangements for her nursing at home. Mw. Overbeek lay quietly listening but not participating directly in the talk. She had earlier indicated that she did not want to be admitted to the verpleeghuis but was aware that her daughters were worried about leaving her alone at night. “Her legs no longer support her,” one of the daughters said. “We worry about her getting out of bed at night. We are with her all day and need our rest at night. There is of course our brother’s wife, but daughters-in-law cannot do as much as daughters can. It is natural.” Mw. Overbeek was admitted to Regina Pacis, to the ward named Linde, the next day. Over the following two weeks I visited Mw. Overbeek every day. She had a single room so that she would not be disturbed by other patients and could spend as much time with her family as she wished. At first she talked incessantly about her life before the illness. She spoke about how hard she had had to work, managing her shop while bringing up four children during the war;7 about her two husbands, both of whom had died unexpectedly, and the holidays and camping trips she had made with them. She also spoke quite freely about her illness, about the renewal of hope after the operation and the sudden loss of energy and the weakness in the limbs. “The legs are the first to go, my doctor told me,” she said. She described the beautiful dresses that she had had to give away and the delicacies that she could no longer eat. But behind the frank acceptance of the inevitability of death I sensed an underlying resentment, even anger. She wanted no visitors apart from her immediate family. She spoke bitterly about former camping friends who wanted to visit her only after they heard about her illness, and the neighbors who brought only depressing news. She did not want strangers to see her in this condition. She was angry with the nurses for neglecting her and complained about

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the tasteless food that she was given to eat. I tried to listen sympathetically, keeping my responses to a minimum. At times she was drowsy from the pain medication that she was receiving. I would stroke her hand, interjecting a word now and then. It was only later that I came to know that what I thought was a sympathetic gesture was actually unwelcome and even intrusive. I had realized after about a week of daily visits to the patient that there was something not quite right in our interactions, but I could not figure out what bothered me. I had put this unease down to my lack of experience and discomfort with the workings of the verpleeghuis and to the rapid deterioration in her condition. But then the ward in charge told me tactfully that my visits were unwelcome: Mw. Overbeek found my touch uncomfortable. I was devastated. Cornelie tried to comfort me by explaining that for Dutch women of a certain generation, physical contact—touch—has an implicit sexual connotation. “Mw. Overbeek is angry about her physical deterioration and does not want to let go of her autonomy—her bodily integrity,” she said. “She cannot accept the touch of a stranger. Even the touch of the nurses who bathe and dress her is accepted only grudgingly, which is why admission to the verpleeghuis has been delayed as long as this. This is why she wants no visitors.” I stopped visiting Mw. Overbeek, and within a few days she was dead. She had not been a difficult patient as terminal patients go—so why was there this reluctance on the part of the nurses to interact with her? Why had I been given the role of bereavement counselor? Cicely Saunders speaks of a particular modality of sharing the experience of the dying patient. “If we ‘watch with them,’ they will be relieved of some of their isolation, of being mere burdens, and together we can learn that dying is not mere loss” (2006, 39). Other scholars (Glaser and Strauss 1970, 1968; Jenssens, Ten Have, and Zylicz 1999) have spoken about the inaccessibility of the experience of pain and of language’s inadequacy in the communication and understanding of this experience. Neither Cornelie Mous nor I had a language that was adequate to share or understand what Mw. Overbeek was going through. As I have already mentioned, Cornelie was deeply influenced by Kübler-Ross’s thesis on the importance of psychiatric counseling in cases of impending death, and believed that the healthy approach to dying involved accepting the fact of one’s own finitude. Then why not involve the verpleeghuis psychologist in Mw. Overbeek’s case? On the face of it Mw. Overbeek had accepted her impending death. She did nothing but talk about it. But she was also very angry at the thought of losing control of her life. Her anger manifested itself in her refusal to meet old friends, in her inability to eat the food that she once loved, in the complaints she registered, her speech remaining strong and vital even when the body’s vitality had all but gone. Did my touch threaten her because it confronted her with the fact of her own finitude? She was forced to accept the touch of her caregivers—but their touch was purposive, an instrumental part of the “bodywork” that is involved in the nursing and care regime, while mine perhaps conveyed that for all the anger she expressed at her former friends and the quality of care she was receiving, in fact we were together inhabiting a dying space.

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In his posthumously published work on touching, Jacques Derrida tells us that to touch is to reduce one to an anonymity that is close to death—the one touched is neither a thing nor a person but animality or childhood itself (2005, 87). Respect commands us to keep our distance by the gaze, which is a kind of touch without touching.8 But, as Christian Moraru reminds us in a review of Derrida’s book On Touching—Jean-Luc Nancy, touching is also a way of knowing in conditions of obscurity: “[T]ruth and being are tied into the problematic of the haptical. . . . One reaches the limit of things of what we know of our habit and comfort zone, that point that we need to go beyond in order to ‘find out,’ only insofar as we activate this sense” (Moraru 2006, 307). Perhaps my attempt to relate to Mw. Overbeek through the haptic confronted her with the extreme passivity to which her condition had reduced her—to the limits of bodily being. The nurses, already overworked because of the chronic shortage of staff on the wards, were worried about the emotional claims that a terminal patient who was a stranger to the ward might make on them and about their ability or inability to respond. Even though, in the Netherlands, the verpleeghuis is commonly perceived as the place where people go to die, death is not easily routinized within the life of the ward. During my fieldwork I was surprised to note that many nurses actually feared death and avoided handling dead bodies as far as possible. “I will do everything for the living but will not go near the dead,” one nurse told me. The occasion was a night shift that I was just beginning on a psycho-geriatric ward called the Wilg (willow). I sensed a feeling of suppressed agitation as I walked in that evening. I was told that Mw. Jensie, a long-term resident who had come to the Wilg when Regina Pacis had just been set up, was dying at long last. “She has been given a one-person’s room”—the inference was clear—so that she could die in peace.9 The night nurse, Irene, and I would go into her room periodically to check on her. “The blue patches are traveling upwards— this is surely the end,” Irene said. Mw. Jensie was breathing heavily, her eyes wide open, staring fixedly at a point on the opposite wall. “She doesn’t want to give up,” Irene told the nursing head on one of her visits to the Wilg, “but it could be at any moment.” Irene was visibly tense—not knowing when the moment would come. She did not want to sit in Mw. Jensie’s room with nothing to do but also did not want her to be alone when she breathed her last. Unfortunately, when the final moment did arrive Mw. Jensie was alone. We were checking on her at intervals of ten minutes. On our previous visit her breathing was unchanged. Irene was really upset that we had not gone in sooner, and the fact that she was comatose was no consolation. “It has happened” was all Irene said over the phone to the night head, who was probably waiting for the call, because she came to the ward almost immediately. I learned that the afleging (laying out—bathing the body one last time and preparing it for the undertakers) was always done by a senior nurse with the assistance of others on the ward. All young nurses had to participate in an afleging as part of their training.10 “It is never nice,” Irene said. She was also worried about when to inform the ward in charge, who was on leave. Mw. Jensie and the ward in charge had come to Regina Pacis

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together when the Wilg had first started, and she was a special favorite. The ward had left instructions that she was to be informed of any change in Mw. Jensie’s condition. It was three in the morning then, and Irene was not sure just when to disturb her. We were sitting in Mw. Jensie’s room together. Irene told me that she was scared of going down to the mortuary alone; she called it the “cellar” (kelder). She had been asked to do so once before, she said, when she was a trainee—to wait there while the others brought down the body from the ward—but she could not do so. The afleging box had been prepared in advance, and Irene brought it out once the night head joined us. It was a wooden box with a list of contents pasted on the side— gloves, scissors, gauze, a role of tape, and surgical gowns. We donned the gowns and gloves—though I was only a bystander watching the proceedings for the most part and not responsible for the work on the corpse. Mw. Jensie’s body was washed and cleaned in the same way that live verpleeghuis patients’ usually are. Warm soapy water was poured into a green bowl and was used on her face and upper body and then dried off with white towels. A red washbowl and yellow towels were used for the lower part of the body.11 The night head kept up a continuous flow of chatter all the while we were cleaning the body. “The soap is no longer rinsed off,” she said, “so the body continues to smell nice when the relatives come to pay their last respects. We shouldn’t plug the orifices—it looks better this way—like as if she was asleep. But if her feces keeps coming out we may have to anyway. Our people are so well cared for we do not really have to do much at the laying out—just the normal washing and grooming. It’s not as if they smell or anything.” She had recently completed a course with an undertaker and had picked up many useful tips on how to deal with recalcitrant aspects of the body after death.12 We took off our gloves when we started on Mw. Jensie’s face: “We are not professional undertakers, they keep their gloves on for all bodily procedures. But Mw. Jensie was known to us. We need gloves down there—she had had a urinary-tract infection before she died—but not her face. That would be too impersonal.” While the night head was talking to us about dead bodies—facts such as the time it takes rigor mortis to set in and so on—she seemed also to be addressing Mw. Jensie directly. “How does it feel, Mw. Jensie? It’s nice for everything to be finally over isn’t it?” Then she turned to us: “Look, Mw. Jensie is supervising our work here, looking down at us. She must be thinking, ‘I no longer have anything to worry about—I am deliciously dead [lekker dood].’ ” We dressed her in a beautiful new nightgown that the ward in charge had bought especially for the laying out and combed her hair. As we lifted her onto the trolley to take her down to the mortuary, a trickle of yellow mucus seeped out from her mouth, staining her gown. “I always knew that Janikke [an affectionate diminutive of Mw. Jensie’s name] had a perverse [gemeen] streak to her,” the night head laughed. “It’s as if she heard me telling you about not plugging her nose and mouth.” I realized then that the somewhat bizarre tone of the conversation was an attempt to lighten the atmosphere. Senior nurses sometimes take recourse to a comic tone to ease the confrontation with the corporeal aspects of death. Mw. Jensie had, after all, been dying for a long time.

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When I first started work on the ward she was no longer mobile. She would lie in a day bed babbling to herself. But she was a “personality” on the ward—someone who embodied a piece of ward history. The interactions over her dead body reflected this intimacy between patient and caregivers. After we came up to the ward, Irene said, “I am glad that it’s finally over. But now Sister will have to arrange the funeral. I don’t think that she has any family. She has been with us for fourteen years. We will all go to the service. It will be awful if no one turns up.” A relative did attend—a niece-in-law of Mw. Jensie’s who had seen the notice that the ward in charge had placed in the local newspaper. It was she who made all the funeral arrangements—from choosing the music and the flowers to making the funeral oratory. The nursing staff and I made up the funeral cortege. Unlike Mw. Overbeek, who had come to the verpleeghuis to die, Mw. Jensie had a history of living in the ward and was a much-loved member of the ward community. She had been at the Wilg since its inception—a patient with a chronic psychiatric condition that had over time transformed into a kind of dementia.13 Even though she had entered the phase of social death a long time ago, losing aspects of her selfhood and identity along the way, her persona cast a long shadow as far as institutional memory is concerned. Neither of the two vignettes presented here conform to the cases discussed by Kübler-Ross (1969) or Saunders (2006). Instead we see contrasting pictures of the dying process. Mw. Overbeek’s anxiety about her helplessness and her resentment about the loss of bodily integrity found expression in complaints about food and lack of care in the verpleeghuis. Her strongly expressed desire to keep strangers at bay made any form of companionship impossible unless it was expressed through physical aspects of nursing. In contrast, the nursing staff became a kind of surrogate family in the case of Mw. Jensie and gave her a new identity in the face of the slow process of loss of self. Some scholars talk of avoidance as a coping mechanism by nurses and criticize the tendency they have of personalizing the reactions of patients in very difficult situations (Glaser and Strauss 1970; de Swaan 1985). Implicit in this critique is the expectation that the dying space must be therapeutic—achieved through open communication between caregivers and patient. Kübler-Ross (1969) in fact advocates psychiatric intervention to achieve acceptance as a healthy approach to impending death. Kübler-Ross (1969) and Saunders (2006) seem to feel that words come easily to the dying, especially if there are sympathetic strangers to listen to them—that once their pain is understood, words become their solace: “Hearing is the last sense to go and we should go on talking to our patients as though we were sure they can hear” (Saunders 2006, 32). But words do not always come easily, as we shall see, and even if they do they are sometimes so painful to hear that even caregivers trained to hear such words may have to turn away. There is no easy way to relate to the complexity of the inner at the time of death. It is to the unknowability of suffering that we now turn—to the uncertainty of relationships that may be part of the weave of social life and to our relationship to language as a kind of bodying forth so that words become gestures or expressive acts (Das 1998).

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I now turn to the third case, which expresses this uncertainty in a different way than the first two cases. I first came to know Aagje Klaasen when I was attached to the Peppel (Poplar), a somatic ward, for three months. I had been assigned the task of feeding her, a task that required little skill but a lot of patience, ideal for a fieldworker who was singularly lacking in the skills necessary for the physical care of patients. She was partially paralyzed on the right side, including her throat, and could no longer speak, swallow easily, or use her right hand. I remember the first time she actually noticed me. We were sitting together in the living room when one of the residents asked for the television to be switched on. A program on classical music came on, and Mw. Klaasen looked up at the screen transfixed. She was a restless woman—inattentive, fidgeting with the armrest on her wheelchair, moving around the ward constantly as if to compensate for her inability to communicate. Suddenly I remembered reading in her case file that she had been a musician. Unable to contain myself, I exclaimed, “You played the recorder once, didn’t you, Mevrouw?” Her face broke into a radiant smile. Mw. Klaasen and I came to share a special relationship. She was sixty-three years old at the time of her admission, comparatively young for a verpleeghuis patient. She was extremely gifted, and even though she had not received a university education, she had educated herself and had learned to play an instrument. At the time of the stroke that paralyzed her right side she had been trying to learn Latin through a correspondence course. She was fully conscious of the hopelessness of her situation. Her inability to communicate her anguish in words sometimes resulted in the most heartrending of screams that threatened to tear apart the fragile calm established in the ward. She presented a bizarre picture—saliva dribbling down her chin because she could not swallow properly, her dress bunched up over her knees so that her catheter tube was visible. The nurses were helpless, unable to communicate with her, and her fellow patients, absorbed in their own personal tragedies, seemed deeply disturbed by the open expression of the turmoil that seethed within. I found that she did respond to my touch, however. Her bouts of screaming ended immediately if she was held and caressed—given undivided attention by the caregiver. But it was difficult to do this within the confines of a somatic ward, where physical gestures are restrained and largely confined to bed work and bodywork. The ward was supposed to create an alternative community in which patients could lead “normal lives.” Considerable thought was given to the seating arrangement in the living rooms of the ward so that impaired patients could carry on conversations among themselves—“as they would in their homes,” I was told. However, the norm of interaction here was governed by what is considered appropriate conduct in public spaces, on the street, or while entertaining guests in one’s drawing room. There was a conscious effort to maintain the status of patients as “normal.” Nurses were taught to frame invasive activities carefully so as to make them seem impersonal, so as to not seem violative of patients’ privacy. Officially, the relationship between patients and caregivers was supposed to be that of polite strangers, signaled by status behavior that emphasized distance and respect. Mw. Klaasen’s restless movement around the ward breached the norm of

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spatial distance that sustained the normal conception of personhood on the ward and finally led to her transfer to a psycho-geriatric ward even though she was not a typical psycho-geriatric case. It was felt that a psycho-geriatric ward would be more suitable for her because it tolerated a wider range of differences. The loss of inhibitions brought on by dementia allowed nurses far greater emotional contact with patients—contact that could be expressed in haptic forms. Thus the move to the psycho-geriatric ward would also allow her to be provided with a form of therapy through touch that was not possible in a somatic ward, where Dutch inhibitions on touch between strangers was carefully observed. As it happens, Mw. Klaasen was much happier in the psycho-geriatric ward. She developed a special relationship with another patient—an elderly man who in his confused state thought that she was his daughter. She also tried to establish links with her former life. She expressed a desire to see her old books and the poems she had once written.14 When I visited her she would show me pictures from her childhood, books from her nursery school, and poems that she had once written. But even though she was trying to establish a new relationship with her past, there was also another part of her past that she was trying to renounce—the torment and suffering that had dominated a part of her adult life. Her sister had told me that she was an intensely emotional person and had begun to feel herself disintegrating long before she succumbed to the stroke. I sorted out her papers with her. She was anxious to look at her schoolbooks and the children’s poems that she had written, but turned away in distress when we came across some of her other poems in which she had expressed her despair at the meaninglessness of passing time. For Mw. Klaasen the past was in a way embodied in the family and the community from which she had been dislocated after entering the verpleeghuis. In the somatic ward, she expressed this dislocation through screaming. After being shifted to the psycho-geriatric ward she seemed to calm herself down by inhabiting only a certain region of the past and bracketing the rest away. The tolerance in the psycho-geriatric ward of “childlike” behavior allowed a temporary equilibrium.15 She died a few months after her transfer. I discussed Mw. Klaasen’s case with the doctor who had been responsible for her transfer.16 The decision had been a difficult one since he did not think that she really was a psycho-geriatric patient. Although he was relieved that she had responded positively to the new ward, he also felt that this was due to a loss of resistance on her part. While she had been on the Peppel she was still trying to regain control of her life in the new context of the ward, to restore a sense of self. Her restlessness, the ceaseless wondering around the ward, was her way of trying to come to terms with her new environment and the altered sense of corporeal capability. He interpreted her acceptance of the psycho-geriatric community in the new ward as a sign of defeat—a loss of the will to resist, a loss of hope. What about the nurses who had cared for her in the somatic ward? It was their inability to communicate with her that was the main reason for her transfer. She threatened the sense of order on the ward, and the idea of the ward as a community in which residents can live a normal life. Shaped by an ideology of care, the verpleeghuis saw itself as

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offering an alternate community for people who could not live “normal” lives on the outside. Normality was supposed to be reconstituted in the ward so that severe impairment could be thought of as a normal part of the aging process.17 The sense of the ward as a living space that was the center of verpleeghuis activity was sustained by keeping death and deterioration at bay. Thus time was oriented to the present, since the future could be perceived only as a kind of loss. A strict adherence to ward routine, including the physical aspect of care of the body, was one of the ways in which this goal was achieved. In common with other Western societies, the Dutch notion of self-autonomy includes the idea of “corporeal self-containment,”—that is, the bodily ability to be an agent who is physically in control of his or her actions (Lawton 2000, 7). Nurses would go to elaborate lengths to sustain the appearance of normality by dressing and grooming patients so that they conformed to the codes of social decorum.18 The danger of extreme dependence on the ward was that in the process of providing “total bodily care” the patient’s body may become assimilated to the nurse’s own sense of self, which is why there were elaborate codes by which bodily care was made impersonal (Lawton 2000, 36). Mw. Klaasen’s refusal to conform to the norms of physical containment threatened to disrupt not only ward routine but also the sense of personhood that the nurses were trying so hard to help their patients achieve. In the absence of any possibility of cure, the sense of hope that verpleeghuis nurses tried to cultivate was maintained through this fiction of normality.

O N TO U C H I N G T H E OT H E R Survival is life beyond life. JACQUES DERRIDA, 2004

In a discussion of Jacques Derrida’s last interview before he died, Didier Fassin (2010) reflects on the gap between a death foretold and the hope of life, in the context of an ethics of survival. Using biographical fragments of AIDS patients whom he worked with in South Africa, Fassin shows how survival as a deferment or postponement of death becomes an ethical space in which the dimension of human meaning is opened up (see also Derrida 2004 and Cohen 2006). He describes how persons living under the shadow of a death foretold live out the remainder of their lives with heightened intensity and with the hope that their memory will live on after death so that they will continue to exist for others after bodily extinction. There is a hope of moral rebirth and spiritual felicity encouraged by the many churches in South Africa that recruit believers from the rising population of AIDS sufferers. In contrast to Fassin’s respondents, who were all still living within the community of neighbors and kin and were able to get support from these networks of care, verpleeghuis patients have already undergone a process of social death at the time of their admission to the institution. Mw. Overbeek probably came closest to the kind of death that Fassin

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describes. She had had time to put her life in order and to distribute the personal possessions that she had cherished in life, in order to mark the ways in which she wanted to be remembered. Neither she nor the two daughters whom I met were given to an open display of emotion. Instead, emotion was expressed through day-to-day activities of care, and the fact that the verpleeghuis displaced that mode of expression led to some tension in the last days before Mw. Overbeek finally succumbed to her illness. Among the three patients discussed here, it was Mw. Jensie who, because of her unusually long stay in the verpleeghuis, had developed a social network in the ward. The nurses were her surrogate family, and her death was mourned in a way that is rarely discussed in the literature on hospitalized dying. She had what John Costello (2006) calls a good death—one that followed a predictable course and did not disturb the order of sentiment on the ward. Mw. Klaasen, unfortunately, died just as she was beginning to find acceptance in the ward community. Her neighbors in the psycho-geriatric ward were unlikely to remember her for long since they all suffered memory disorders, and it is unlikely that the nursing staff developed a strong emotional bond with her in the short time that she was there. She probably was remembered far longer by the residents and staff of the Peppel—the first ward to which she had been admitted. Her presence confronted the patients with the face of their own suffering and disrupted the sentimental order of the ward—the subtle pattern of mood established on the ward that influences the feelings of all its members, inmates as well as nursing staff (see Costello 2006). My own interactions with these three women also influenced the way in which I perceived their deaths. My relationship with Mw. Overbeek and Mw. Klaasen was mediated largely through the sense of the haptic. Touch was a substitute for words that had failed. Mw. Overbeek used words as a barrier to communication—to keep away those who threatened her sense of bodily integrity and to express her resentment at the thought of dying. Words became meaningless in Mw. Klaasen’s case. Not only was she not able to speak, but she was also unable to listen. The touch that was so threatening to Mw. Overbeek’s sense of self was the only way to communicate with Mw. Klaasen, though as many in the verpleeghuis thought, it was also a mode of infantilization. Stroking is more than a form of soothing, Derrida says; it addresses a “who” rather than a “what,” an “other” who is concrete, in your presence, rather than some other in general (2005, 69).19 For Saunders and Kübler-Ross, access to the other, to the dying patient, is through words. A dignified death is achieved with the help of bereavement counselors and nurses who have the ability to watch with the dying patient and listen to her or him come to an awareness and acceptance of death. Perhaps watching could also be thought of as a kind of touching—a tactful kind of touching with the eye, as Derrida says. But as Veena Das (2007) reminds us, the eye is not merely an organ with which we see but also the one through which we weep. Saunders and Kübler-Ross present idealized pictures of the dying process and do not confront death as embodiment—an embodiment that is marked by physical decay and the loss of “corporeal self-containment,” to use Lawton’s (2000) felicitous phrase.

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How do nurses express concern for their patients? Is the empathic emotional attunement to a patient a sign of failure? The extreme response to Mw. Klaasen on the Peppel may in part have been due to the impossibility of maintaining a detached concern toward her by the nurses. Some scholars describe nurses as “expressive specialists” (Cadge and Hammonds 2012) who are supposed to provide competent care and to manage their emotions at the same time. The routinization of care itself may be a kind of coping strategy by which strong emotions are sought to be managed. The dualism between detachment and concern may be negotiated through hands-on body care, where empathy for patients’ suffering is expressed through purposive touching rather than words, especially in somatic wards like the Peppel, where norms of detachment are publically expressed. Death, even in a nursing home where one has gone to die, is a social event—as an appeal to and responsiveness to the suffering of the other. Touch, in this context, becomes a mark of “compassionate responsiveness such that in touching the other one is as a touching (on) death” (Elvey 2006, 15.1). The resonances of this idea with the biblical theme of openness to embodiment, to the world as skin and flesh that is known through the mediation of compassionate touch, as well as Cicely Saunders’s evocative allusion to the death of Christ, make me think of the religious imaginary as limning the secular work of care in the nursing home. Anne Elvey (2006) brings some narratives from the Gospel of Luke in conversation with Derrida’s text on touching to explore the different modalities of “being towards the other”—being interrelated—that can be expressed through the language of touch. She describes acts of touching as forms of blessing, such as the healing of a woman with the flow of blood when she touches Jesus. Here Jesus is the one who is touched, and he responds by healing the wounds of the one touching him—a form of compassionate contact. As Derrida says, it is through the intimacy of touch that one comes to a sense of one’s finiteness—through the reversibility of touching and being touched—to a sense of the presence and proximity of the other without image, without representation, and with a sense of the ungraspable that is at the heart of interrelatedness (2005, 260). For an anthropologist to have shared these moments through participation in the work of the nurses was an education in a different modality of care that complements the discussions of the dying experience constructed through a reliance on words. It also shows that the secular body is limned with a religious imagination.

N OT E S

1. See Kübler-Ross 1969. 2. I spent a year and a half at Regina Pacis—from August 1986 to September 1988. 3. I subsequently spent time in the wards as well. Regina Pacis is known as a “combination” (gecombineerd) verpleeghuis, which means that it caters to both somatic and psycho-geriatric patients. I spent three months each in a somatic and psycho-geriatric ward and was also able to accompany the verpleeghuis doctors on their visits to patients in the hospital as well as at home. The verpleeghuis is a long-term residential facility that caters to geriatric patients with severe

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chronic impairment who need intensive nursing care. Even though Regina Pacis is defined as a reactivation and revalidation center, most of its patients are there to stay. 4. Cicely Saunders (2006) also spoke out against euthanasia as a form of active termination of life, and most hospices do not offer euthanasia as an option. In most hospices the distinction between euthanasia or physician-assisted suicide and the unintentional hastening of a patient’s death by giving very high doses of morphine is crucial (Jenssens, Ten Have, and Zylicz 1999). 5. Bert Keizer (1994) is a significant exception. He writes as a medical practitioner about his experience with patients near death and his ambivalent relationship to the Catholic Church and to clinical practice and the ways in which they seek to come to terms with bodily decay. He is also quite critical of the hospice movement and of the distinction that it makes between physician-assisted suicide and the unintentional death of a patient who has been very heavily drugged. 6. According to Kübler-Ross (1969) there are five stages exhibited by the dying patient: denial, anger, bargaining (usually with God), depression, and acceptance. 7. This is the Second World War. The Netherlands was under German occupation during the war. The majority of verpleeghuis patients in the 1980s had lived through both world wars. 8. As Derrida says, there is a hiatus at the core of “con-tact”—an avoidance or letting go. 9. Julia Lawton (2000) has said that this kind of room assignment may have more to do with other patients, with the fear of an open confrontation with death, especially with its physical aspects. 10. The unofficial term for a nurse’s first attendance at an afleging is ontgroening (“initiation”). 11. Caring for the body is a specialized activity, broken up into different tasks that are colorcoded for easy recall. For the day-to-day washing of the body there is a division into upper and lower. Weekly showers are classified somewhat differently. 12. If a person dies with her eyes open, a drop of glycerin helps to close the eyelids without applying undue force to the eyes. This was one of the tips that we were able to apply in Mw. Jensie’s case. The closing of the eyes after death is a symbolically charged act in the anthropological literature on hospital death. In an early work David Sudnow (1967) gives examples of nurses who would close the eyes of patients before they actually died since this is so much more difficult after death. 13. At the time when Mw. Jensie was institutionalized geriatrics was still a nascent discipline in the Netherlands. Young people in the Netherlands today are no longer sent to the verpleeghuis. 14. Mw. Klaasen started to make an effort in using the mechanical communicator that she had been given. Her hand was still too weak to be able to type properly, but with great effort she could type in a few syllables, which allowed the nurses to figure out what she wanted. 15. This was the word used by her sister to describe the changes in Mw. Klaasen’s behavior. Els van Dongen (1997) speaks of infantilization as a way of relating to the ungovernable body. She is speaking of nurses, however, and not to the deliberate infantilization of self that a person may choose to adopt as an orientation to the world. 16. Even though the final decision for the transfer came to rest with the doctor, the process of decision making involved the multidisciplinary team responsible for her care—including the nurses, the social worker, and the psychologist. Since the decision for her transfer was

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partly determined by their observation of my interactions with Mw. Klaasen, I was also considered to be an important part of the team and was asked to be with her during the period of transition. 17. The verpleeghuis defines itself in opposition to the hospital, which is supposed to be based on a model of cure. 18. No patients wear nightclothes during the day. Women wear stockings and shoes, and their costumes are accessorized with matching handbags, necklaces, and so on. 19. This sense of touching was also brought out very clearly in the way that Mw. Jensie’s dead body was handled. We took off our gloves to wash her face because we knew her as a person.

REFERENCES

Cadge, Wendy, and Clare Hammonds. 2012. “Reconsidering Detached Concern: The Case of Intensive-Care Nurses.” Perspectives in Biology and Medicine 55 (2): 266–82. Cohen, Richard A. 2006. “Levinas: Thinking Least about Death: Contra Heidegger.” International Journal for Philosophy of Religion 60 (1/3): 21–39. Costello, John. 2006. “Dying Well: Nurses’ Experience of Good and Bad Deaths in Hospital.” Journal of Advanced Nursing 54 (5): 594–601. Das, Veena. 1998. “Wittgenstein and Anthropology.” Annual Review of Anthropology 27:171–95. ———. 2007. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press. Derrida, Jacques. 2004. “The Last Interview.” SV, November, 1–16. http://m.friendfeed-media .com/1a5bc7e65ea7a00a0fcfda2ad242360ed9f2d3c4. ———. 2005. On Touching—Jean-Luc Nancy. Stanford, CA: Stanford University Press. de Swaan, Abraam. 1985. Het Medisch Regiem. Amsterdam: Meulenhoff. Elvey, Anne. 2006. “Touching (on) Death: On ‘Being Toward’ the Other in the Gospel of Luke.” Bible and Critical Theory 2 (2): 15.1–15.17. Fassin, Didier. 2010. “The Ethics of Survival.” Humanity, Fall, 1–15. Glaser, Barney G., and Anselm L. Strauss. 1965. Awareness of Dying. Chicago: Aldine Publishing. ———. 1968. Time for Dying. Chicago: Aldine Publishing. ———. 1970. Anguish: A Case History of a Dying Trajectory. London: Martin Robertson. Good, Byron. 1994. Medicine, Rationality and Experience. Cambridge: Cambridge University Press. Jenssens, Rien J. P., A. Ten Have, and Zbigniew Zylicz. 1999. “Hospice and Euthanasia in the Netherlands: An Ethical Point of View.” Journal of Medical Ethics 25 (5): 408–12. Keizer, Bert. 1994. Het Refrein is Hein. Nijmegen, Netherlands: Sun. Kübler-Ross, Elisabeth. 1969. On Death and Dying. New York: Macmillan. Lawton, Julia. 2000. The Dying Process: Patients’ Experience of Palliative Care. London: Routledge. Moraru, Christian. 2006. “Touching: Proximity, Remove and the Measure of Things.” Symploke 14 (1–2): 306–10. Pool, Robert. 2000. Negotiating a Good Death: Euthanasia in the Netherlands. Binghamton, NY: Haworth Press. Saunders, Cicely. 2006. Selected Writings, 1958–2004. Oxford: Oxford University Press.

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Siebold, Cathy. 1992. The Hospice Movement: Easing Death’s Pain. New York: Twayne Publishers. Sudnow, D. 1967. Passing On: The Social Organization of Dying. Englewood Cliffs, NJ: Prentice Hall. The, Anne-Mei. 1997. Vanavond om 8 Uur: Verpleegkundige Dilemma’s bij Euthanasie en andere Beslissingen van het Levenseinde. Houten/Diegem, Netherlands: Bohn Staflen Van Loghum. ———. 2005. In de Wachtkamer van de Dood: Leven en Sterven met Dementie in een Verkleured Samenleven. Amsterdam: Thoeris. Van Dongen, Els. 1997. “Ongelukjes en Niet-Ongelukjes: Infantilisering en het Oude Lichaam.” Medische Anthropologie 9 (1): 41–60.

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40 LIFE BESIDE ITSELF Lisa Stevenson

The house where Sila lives with her parents is a boxy wooden structure, stained brown, with a row of bedrooms along a hall, and in the living room a small picture window that looks onto the tidal flats of Frobisher Bay. The window usually has a curtain drawn across it. On the walls of the living room are photographs of all the children, including Issac, who died in a snowmobile accident. Below the house, on a jumble of boulders, Sila’s mother and an older woman were sitting, making a fire for tea and eating pitsi, dried fish. Every now and then they would brush away the mosquitoes massing around their heads. The receding tide had left wasted rocks and seaweed scattered across the grayish mudflats. Farther out there were people looking for clams, heads bent, white plastic bags flapping in one hand and a spoon in the other. Sila looked as she usually did—her hair pulled tightly against her forehead, her eyes darkened by eyeliner, wearing jeans and a T-shirt. The only thing that was different was the pair of rubber boots she was wearing. She had lent me a pair, too, which I pulled up over my maternity pants. Walking out onto the mudflats, now veined by shining saltwater rivulets, she began to tell me more about the dreams she’d spoken of the day before. “Usually,” she began, “when I have a dream about somebody passing away . . . somebody always passes away. And when I get up . . . I wake up friggin’ cranky and just knowing that somebody I know is going to pass away but I don’t know who.” Such dreams—unbidden and unwelcome—portend a death. But there are other dreams, too. She tells me a dream in which she and a dead friend meet to smoke a final joint. In turn, that dream reminded her of another—one in which that same friend, look-

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ing at her from the porch of the Northmart, the local store, tries to speak, tries to say something to her, but is unable to. And so, one dream summoning another, we walked out into the bay, sitting for a while on a stranded boulder and then getting up quickly to move closer to the shore when the incoming tide started rushing past our feet. Some of the dreams she told were properly hers, in the sense that she was the dreamer. Others were dreams her best friend told her before she committed suicide, and still others were dreams her own mother had told her, dreams her mother had dreamed when she was pregnant with her—and feeling suicidal. Suicide encircled the stories—her mother’s suicidal dreams, her friend’s dreams of suicide before she took her life, her own dreams of meeting a boyfriend who had committed suicide, and a final story about her namesake who had committed suicide. Listening to the succession of dreams pressing outward like the pulsing of blood from an arterial wound, I was caught in a stream of stories about death and the dead. Yet strangely, the dreams were told in such a way that I came to think they were also about life and the living. I want to say that through dreams she described a life in which she is encircled by death and the dead, but is also doggedly alive. Is it possible that all stories, like dreams, are alive in the sense that narrative makes a life for the author, even if the story itself describes the way death circumambulates that life? In some sense, what Sila provides is stories in the time of suicide. The dreams she tells and the telling of the dreams come after the searing pain of being there when someone chooses to die—a pain that I have not found a way to write about directly. Instead I am trying to write and describe the living that goes on in the company of dying—what I am calling life beside itself. That kind of living, that life, seems to contradict some tenaciously held assumptions—assumptions that are central to colonial and bureaucratic regimes, but that also seem to slip into our own anthropological discourse from time to time. One of those assumptions is that it is possible to locate something like “life itself”— a kind of biological persistence that might be preserved at the expense or exclusion of life in community. Life itself—a central object of the welfare colonialism through which Canada has long governed its Arctic territories—is also the short-term object of many suicide-prevention campaigns where keeping people alive has become the primary goal. My argument in this chapter is that when we go looking for “life itself” (even if we hold that such life is actually “bare life” and thus a product of diabolical exclusions such as the kind João Biehl documents in Vita [2005] or Giorgio Agamben describes in Homo Sacer [1998]), we actually find life-beside-itself. Michel Foucault argued that modern forms of power (which he called biopolitical) have increasingly turned to control over the life of a population (rather than the maintenance of territorial boundaries) as the site of enacting their sovereignty. In a biopolitical regime, the maintenance of such life itself—the biological persistence of a population—places death “beyond the reach of power, and power has a grip on it only in general, overall, or statistical terms” (2003, 248). Biopolitics is active with regard to life, and passive with regard to death. It makes populations live and lets portions of the population die.

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In other places I have questioned the psychic life of such biopolitics—the psychic effect of what Foucault called “making live” and “letting die” (2003, 247). That is, biopolitics as a logic of care informs not only the way policies concerning the population are enacted, but also how individuals engage with other individuals while adhering to the logic of biopolitics that treats individuals as members of a population. Thus in previous work, I pay particular attention to the conjuncture of biopolitics with colonial reason. I ask what difference it makes that Inuit youth are exhorted to live and expected to die (see esp. Stevenson 2012). In this chapter I want to turn in another direction: to question the presumption that it is possible to isolate something like life “itself” (rather than life that is outside, beside, or otherwise not self ) at the level of the individual (rather than just at the level of the species body). Suicide, whatever else it may be, is the active usurpation of the individual’s power over death—a power that biopolitics has forgone. By reasserting the question of life or death at the level of the individual Inuit, suicide is thus the ultimate affront to the biopolitical regime that has existed since the 1940s in the Canadian Arctic. It also draws our attention to the possibility of something like life-beside-itself. In fact, confronting this presumption that there is such a thing as life itself (in the clinic, in the field, in philosophical texts) often pushes anthropologists, myself included, to a renewed investigation of some of the empirical ways that life is not itself—what I call life beside itself. Because as we shall see, one can actually be dead and alive at the same time, one can live in dreams, and one can be already dead in one’s own imagination. Attention to life beside itself reveals how the notion of “life itself” depends both on a series of untenable binaries—alive/dead, present/future, itself/not itself—and on the notion of the singularity of time. Several of the dreams Sila told me revolved around her best friend, Linda, who had committed suicide a year earlier. Of the dream where Linda and Sila meet again to have a final smoke, Sila says: We always used to hang around and say whoever passes away first we’re going to go and have our last drink or smoke in one of our dreams. So I had a dream—it was me and Linda and her two kids’ dad. He was driving and we were in between High School and Brown Building, just parked there, and we had a nice view of the town. And we started smoking. And she looked at the joint and was like, “See . . . I told you I was going to come back and we were going to smoke!”

So promises made in life are kept in dreams. And to whom does the dream belong really? Sila or Linda? The dead return, as they promised they would, and a friendship, begun in life, is enjoyed in death. “We had a nice view of the town,” Sila tells me. A promise, Nietzsche reminded us, projects the self, and by extension life, into the future. For Nietzsche this is what the self was—a series of promissory notes that give the illusion of continuity over time. But what happens when the life of the self, projected into the future,

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is no longer living? Such dreams are not simply the subjective fabulations of the dreamer, but another time, a discrepant temporality in which the dead and the living can meet again. A temporality in which it makes no sense to talk about “life itself,” but instead of life beside itself. The languorous pleasure of this dream—two friends smoking a last joint and the promise of a friendship in death—is disrupted by the next dream she tells: But the last dream I had about Linda was . . . It was wintertime and I went [to] Northmart and I was walking all alone, I couldn’t find any of my friends, and I saw her and she had all her winter stuff on and we were just at the porch. We were waiting for a cab but there was nothing coming. So I just started going home. It was like we wanted to say hi to each other but . . . we couldn’t . . . I don’t know.

Her voice, low and flat, trails off. “Like you were trying to say hi, but you just couldn’t?” I ask. “It was—I knew it was her, but it wasn’t her.” I have known Sila at times when it was hard for her to get out of bed. The pitch of her voice could descend so low that it would seem to be dropping away into her body. At those times, the force or desire needed to send a voice beyond its body seemed unavailable and I would have the corresponding desire to shake her, to shake something out of her. To loosen something. This was different. She told me some beautiful, some sad, and some terrifying dreams. But as she told the dreams her voice had its own force. It lifted away from her body. She was telling me something; the filaments of story reached outward. I wonder, then, if we don’t lend enough importance to the grammar of a life. Do we at least begin to create a world for ourselves through simply stating that something, anything, is?1 Listening to the tape I made of our conversation later, however, I realized that there were moments when her voice did become low again. It happened in the interstices of the stories, between one dream and the next. “I don’t know . . .,” she would say, and her voice, low and flat, would trail off as if each dream was a proposition that she would lose faith in once it had been stated. What if that isn’t the way it is? What if I haven’t managed to communicate how it is? What if this isn’t a livable world?2 These dreams, I realized, were more than curiosities, more than a cathartic retelling of past events. Each seemed to encapsulate or at least gesture toward a whole epistemology: How do we know and what do we know about the dead? About ourselves? What is the time and place of the dead? What, then, is the sense of the word know in Sila’s assertion that she “knew it was her, but it wasn’t her?” What does it mean to know it was Linda, but also to be able to state with conviction that “it wasn’t her”? What is this sense, familiar to dreamers, that the rules of everyday life, especially the rule of noncontradiction, no longer apply? The simultaneity of dreams seems to compress something that is and then later isn’t into something that is

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and isn’t at the same time. Sila described this compression of time in the following way: “Because you know how you think very fast when you’re dreaming? Like you could say a whole story in ten seconds or something?” So for a period of Sila’s life, Linda was alive, was herself, and then after she committed suicide she wasn’t alive, wasn’t herself. But in the dream she seems to be both at the same time—available and unavailable, herself and not herself, wanting to speak but not able to. The way Sila puts it is this: “I knew it was her, but it wasn’t her.” My question is, What relation does this doubled knowing (when something is and isn’t at the same time) bear to her words, her negation spoken just prior: I don’t know. I don’t know. Three words scattered throughout a conversation, three words spoken in tones that suggest that the speaker wasn’t fully there, was moving elsewhere, an elsewhere that called her conviction about what she was saying into question. As Ludwig Binswanger says (and in so saying he makes dreaming a mode of existence rather than a play of shadows), “To dream means: I don’t know what is happening to me” (1993, 102).

WHY TWO CLOCKS? KNOWING AND TEMPORALITY

Perhaps it’s my own dreamlike association, but I keep thinking of an image of two alarm clocks that I first came across while I was writing my dissertation. In a government publication ominously entitled Eskimo Mortality and Housing (DHWC 1960, 44), there is a photo of a young girl in a tent sitting on a sleeping platform with her legs stretched out before her and her baby asleep beside her. Everything is neat and tidy and in its place. The woman is smiling. The caption below the photo reads: “A clean tent interior, Lake Harbour, July, 1955. Why two clocks? Note the stone seal oil ‘lamp’ and the wooden frame above it on which pots and the kettle are suspended” (44). Sure enough, when you look closely enough, you can see on the counter beside the sleeping platform two almost identical round-faced alarm clocks with bells on top.3 Why two clocks indeed? The question is both derisive—these Inuit have no indoor plumbing, and only one bed for a family, but two alarm clocks—and bewildered. The excess, in a document designed to demonstrate the dire inadequacies of government housing for Inuit, is curious, but also almost galling. Do Inuit really need such luxuries? One alarm clock would be enough to produce the regulated life that the colonial bureaucrats are trying to inspire and that researchers were trying to measure. One alarm clock is enough to train and discipline a whole family to wake at the same time each morning, each season, no matter where the sun is outside the door.4 It has now been half a century since Inuit families were brought from their dispersed camps on the land to settlements clustered around administrative centers. Is it possible that, as others have suggested, territory is a minor trophy of colonialism—when compared to the domination of time?5 However we feel about the answer to this question, there remains a curious affinity between clock time and what I have called elsewhere “anonymous care” (Stevenson 2012). Clock time homogenizes time and empties it of its

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subjective and emotional qualities, just as anonymous care is indifferent to who precisely is being cared for, thus in some sense standardizing what it means to care. During the colonial period Inuit were charged with adopting the way of life of a people—the Qallunaat (or non-Inuit)—for whom time was an extractable resource and for whom “a life” could be invested wisely or foolishly.6 Clock and calendar time reifies minutes or seconds of time into slots, “into which we ‘drop’ activities or commodities which we can ‘save,’ ‘spend’ or ‘waste’ ” (Christie and Halpern 1990, 742). Inuit who came to live and work in Iqaluit, then known as Frobisher Bay, in the 1950s (first on a temporary basis and then permanently) resisted the dramatic reordering of time that a welfare bureaucracy demanded (Tester 2006). Out on the land, Inuit hunt when the weather or ice conditions are favorable, with little regard for what time of day it is. People generally eat when they are hungry and sleep when they are tired. In the settlement, Inuit were expected to work regular hours on a regular weekly schedule. It was no longer appropriate to go hunting “when the conditions were right.” Describing the pain of being taken from her parents’ camp on the land near Igloolik to a residential school, one woman recalled, “We were so controlled. Every minute of the day. We had to line up for this and line up for that. And we couldn’t do this or that.” The image of two alarm clocks recurs in the archival record. Phyllis Harrison, a social worker in Iqaluit who published a piece in 1962 on what she called the Inuit transition from the “stone age to the atomic age,” was also unsettled by two alarm clocks she notices in the home of an Inuit family. For Harrison the clocks were a sign that the Inuit were trying desperately to fit in with non-Inuit norms of cleanliness and time management and sometimes overdid it. Writing about Anawakaloo, a woman who had been given subsidized housing by the government, Harrison writes: “And time! At camp, there’d been nothing to divide time except night and day, hunger or the urge to sleep. Now two shiny clocks ticked busily—a sign of her over-anxiousness, not to forget when it was time for school—or Anawakaloo to go to work” (Harrison 1962). One clock, one temporality, is surely enough. Two alarm clocks are slightly scandalous. Perhaps the clocks are also uncanny, in the way twins are uncanny for Freud. In having two clocks, the clocks cease to be simply a functional tool, useful for producing disciplined subjects. Amos Oz has said that when he was a child he dreamed of becoming not a writer but a book. Perhaps now we dream not of living orderly lives, but of becoming clocks. We wear clocks, as watches, on our bodies like a second skin. It becomes hard to say whether the clock becomes like us, with its “hands” and its “face”—or we become like clocks, experiencing our bodies as biological clocks. What’s certain is that the clock becomes such a familiar tool that we can represent it to ourselves, truly notice its presence, only in a moment of shock—as when there are two clocks instead of one. In 1955, the same year the picture of the two clocks was taken, John Willis, the medical director on board the Eastern Arctic Patrol, returned with his own image of two clocks, this time a “photograph in prose” rather than an actual photograph. He wrote, “One tent had two perfectly good alarm clocks ticking side by side and set within a

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minute of each other, and yet I am sure that twenty minutes meant nothing to the owner” (Willis 1955). Again, amid the other apparently useless items, the doubled clocks. This time they are ticking side by side, and they are juxtaposed with the collection of small bottles neatly arranged on a shelf, bottles that conjure up for Willis what he calls, further on in the passage, “votive offerings on the altar of a heathen temple.” What Willis intuits is that the clocks, like the bottles, are not being used for their Christian, or at least their Protestant, purpose—to help produce disciplined bodies able to contribute to the accumulation of capital. Instead their very “clockiness” seems to be celebrated, the beauty of their faces and hands rather than their function—and in this way, like the bottles seen through the haze of an oil lamp, they seem to pay homage to a different god. Willis’s dismissive comment that “twenty minutes meant nothing to the owner” of the two clocks in turn reminds me of a story an Inuit teenager told about the events that occurred when one of the last camp leaders died. The man had been born and lived most of his life on the land, resisting the pull of settlement life. Some time after his death his family returned to his camp to visit. “When they entered the house the clock started— like the arms or whatever you call them . . . the hands—started going crazy.” She was trying to tell me that the house was haunted, that something untoward was happening out there at the camp. But what does a haunted clock signify? Why is the crazy spinning of its hands so spooky? Are the clocks instruments of colonial time or offerings to a heathen god, or something else altogether? An Inuit teenager once told about the time he stayed for a month with his great-uncle, an elderly man, in a small community on Baffin Island. He woke up one night to hear the Teletubby toy talking. First, it was saying things in its regular voice, “You know, ‘Babacababa,’ ” he said, imitating the high pitch of a Teletubby toy, “and then it would start speaking different words with a deep voice. My great-uncle, he just let it be, it didn’t bother him because he’s a Christian and he knows it wouldn’t harm him or anything. The next morning when we woke up we see him holding the Teletubby and he told us all to come out and they were making a fire out there. And we were wondering why he was holding the Teletubby and making a fire out there. We were walking down the stairs and all of a sudden—like he’s holding on the top of the Teletubby’s head—and out of nowhere it just starts speaking. I don’t remember what it said. And so my great-uncle, he threw it into the fire, and you could see really dark, black soap, going anywhere, all over the place, and then it just went into the ground and disappeared. And the next night we were killing Elmo. Yeah, so we were beating up the rest of the dolls.

Conversion to Christianity is here glossed as not letting the spirits of childhood bother you anymore. Taking place over a century and a half, conversion to Christianity is not something that is ever complete. It’s not surprising that the contest between different ways of approaching what is alive and real should also take place in the realm of toys—those

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objects that animate our childhood and are simultaneously real and not, alive and inert, fact and fiction. Teletubbies that talk in deep voices are exorcised, the deep black soap of their insides disappearing into the ground. So rather than decisively unpacking what it might mean for an Inuit woman to have two clocks, I want to question also my own (and Willis’s) sense of the strangeness or uncanniness of having two clocks. I want to suggest that part of this has to do with the doubling, and the doubling of a timekeeper when time is something we think of—at least in the workaday world that the Inuit colonial administration was trying to impose—as importantly singular. So we have the doubling of something that usually exists by itself (one clock at the side of a bed, as a token of the category clock, as a token of time passing), here appearing in a pair, disrupting our sense that we know what a clock is for, that we know what a clock, or time, is. The possibility of a clock-in-itself seems to be dissolving. Returning now to the flush of Sila’s dreams, I am suggesting that the dream-time is contradictory and, in that sense, importantly doubled. Sila tells me another dream. This time it’s a dream her mother had when she was pregnant with Sila. The dream concerns three friends of her mother’s who had recently died. One had died by suicide, another had got “lost” (presumably on the tundra or ice, I didn’t ask), and Sila couldn’t remember how the third had died. The dead friends were menacing her mother, threatening to follow her when she tried to leave them and go “home” to return to the living. Sila explains: Cuz it wasn’t very nice where she was. It was like scary, creepy or something. She [her mother] was saying “Eeee, I wanna go home now!” and those three dead people were saying “Malijangajarit,” I’m going to follow you. Seriously: “I’m going to follow you!” And she was like, “No, I’m going home! You guys can’t come!” Because she knew they were dead, but . . . when you dream about somebody who’s dead, you just can’t say, “Hey, you’re dead.” You just think about it.

Through telling me her mother’s dream Sila describes the strangeness of knowing something that can’t be expressed in the time of a dream. Knowing something in two temporalities. The interesting question, of course, is why you can’t say: “Hey you’re dead!” to someone in a dream. Partly, I think it’s a question of the dead being both dead and not dead, much in the way Linda was and was not Linda in Sila’s earlier dream. That is, the dead may be dead in waking life, but not dead in the dream. And the dreamer may have both knowledges simultaneously. And so while Linda may have a singular aspect, she is two things at once: dead and alive. Here things get complicated; discrete forms of knowledge and agency are hard for me to disentangle, though perhaps that’s precisely the point of dreaming. For the sake of clarity (however ill-advised when dealing with dreams), let me outline a few things about how this particular dream of the three dead friends worked. First, when Sila’s mother told an elder that she had dreamed about her dead friends, the elder immediately knew that

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her mother had been thinking about suicide. The dream revealed to the elder her unexpressed thoughts. Even still, this is not a simple case of a decoded metaphor that would run something like this: dreaming of dead people equals having thoughts of suicide in waking life. Instead, having a dream about dead people when you are suicidal does not explain away (and thus de-realize) the dead as latent desires or fears that belong properly to the world of the living. Rather, the dead in dreams act on the dreamer, and following the dead of dreams to the places that they call the dreamer to would mean almost certain death. As Sila explains, “In your dreams, when you feel like committing suicide or something, then you see dead people trying to get you . . . to go to a certain spot or area. Then you go on that spot or something, then you die.” This complicates what Sila means when she says of her mother’s dream, “She knew they were dead, but . . . when you dream about somebody who’s dead, you just can’t say, ‘Hey you’re dead.’ You just think about it.” You can’t say it partly because the dead are alive to the dreamer and can still exert their power over the dreamer’s very life. They are alive in some sense, or at least their power over the dreamer is very much alive. It’s not that you know the dead are dead and thus they’re false, or merely the melancholic fabulations of a dreamer. Not being able to say, “Hey you’re dead” seems less about being under the thrall of a dream and thus unable to speak the truth of the situation, and more about experiencing a moment when two temporalities, that of the dream and that of waking life, are superimposed—twinned, as the two clocks are. As often is the case for the anthropologist, it’s about being caught in one time but aware of the truths of another. You can’t say, “Hey, you’re dead” because they both are and aren’t dead—and you are responsible (in the sense of being mortally affected by) the truths of both temporalities. For example, Sila tells me about a dream her friend Linda had before she committed suicide. She had a dream that she killed herself. And I was at the hospital, crying and looking for her, to see which room she was in, and she was like, “I’m right here! Hello, Sila! I’m right here. Why can’t you see me?” She said I was still crying and she was waving [her hand] in my face. “Hello, I’m right here, Sila.” But I can’t . . . then she realized . . . After that [dream] she killed herself . . . I don’t know.

Once again, Sila’s I don’t know at the end of the retelling of a dream marks her ambivalence about what it means to know something, and the way that ambivalence marks the contours of her subjectivity. For some, the webs of phatic interjections in a conversation are a constant reaffirmation of hope (“Anyway, wow!”; “Can you believe it!”; etc., etc.); for others they seem to call on the listener to accede to a kind of agreement (“You see what I mean!”; “Amazing, isn’t it?”). But for Sila the words that fill in when no other words

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swim to mind are I don’t know. Her friend Linda, in a dream she has before she dies, realizes that she is dead and can’t talk to Sila anymore, when in fact she isn’t yet dead but will be soon. Her dream doubles one Sila will have later, when she can’t express her knowledge that her friend is now dead, since she is alive in the dream. In recounting these dreams Linda becomes a storyteller, in Walter Benjamin’s sense of the term. Benjamin contrasts storytelling with the communication of information that occurs through a newspaper. He suggests that information, unlike a story, “lays claim to prompt verifiability. The prime requirement [of information] is that it appear . . . ‘understandable in itself ’ ” (1968a, 89). Like life itself, information should be intelligible in itself. Storytelling, on the other hand, “does not aim to convey the pure essence of the thing, like information or a report” (91), nor does it even try to appear understandable in itself. In fact, one of Benjamin’s storytellers says, “You can learn nothing from the papers. . . . They always want to explain everything to you” (Benjamin 1999, 660). Sila’s dreams, and their retellings, don’t explain much at all. They leave open the possibility that Linda is and isn’t herself. That life is and isn’t itself. But Sila’s dreams, and their retellings, recognize Linda’s presence, the fact that she was there in the dream. And that seems to matter. A lot. I am suggesting that life itself is something like “information” for Benjamin, intelligible in itself, but without a future. Stories, like life, open onto an undecidable future. Sila’s dead friend Linda both is and is not herself. And Sila doesn’t know exactly whether she knows what she is talking about when she tells her stories. But she tells them, and in telling them Linda lives. She is there, taking in the beautiful view of the town, she is there trying and failing to speak. As a companion, Linda lives a life that is somehow beside itself. At a party in Iqaluit, a psychiatric intern from Toronto (who had flown in to do consultations in several Baffin communities) comes over to talk to me, hears about my research, and proceeds to tell me she’s convinced that much of the suicide problem would disappear if only parents would make sure their children and teenagers went to bed by 9 p.m.7 I was affronted at the time, feeling the way her comment resonated with so much colonial advice on keeping clean, keeping warm, and being good Canadian citizens. But I also knew what she meant; I, too, need a lot of sleep to stay sane. The psychiatrist was right to point out that many children and teenagers don’t have regular bedtimes. In the springtime young people, responding to the endless daylight, often stay up into the early hours of the morning and then sleep in past school time. I celebrated one seven-year-old’s birthday at eleven o’clock at night when the sun was still slanting across the bay, the wind had died down, and the teenagers had finally finished playing a game of golf across the soggy tundra. We played circle games with dice, ate barbecued seal meat cooked over an open fire, and had juggling contests. The children played with the toy trucks and cars scattered outside our tent until three or four in the morning.

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A few months after the party at the nurse’s house I receive an email entitled “BEING INUK IS . . .” The body text contains thirty sentences, all beginning with “Being Inuk is . . .” One of them read, “Being Inuk is . . . playing basketball at the outdoor courts at the Youth Dome till 3:00 a.m.”8 In the summer when the sun hardly sets, Inuit today still stay awake until late into the night, sometimes sleeping very little at all. At two in the morning the “ring road” around the downtown core is humming with teenagers walking in threes and fours, and groups in cars, “driving around.” This question of an Inuit way of being in time was posed in a somewhat different way when I went caribou hunting with two teenage guys, Joetanie and Ili. For several hours we hiked through a series of valleys carved by a sharply twisting river and flanked by tall gray cliffs. We saw many animals, but they all disappeared as soon as we spotted them: four caribou vanished over the crest of a hill, a hare hopped behind a crop of boulders, a wolf evaporated into the valley walls, and a falcon swooped overhead and was gone. Yet the day was kajjarnaqtuq—something that creates longing. So instead of feeling frustrated we talked about the meanings of animals disappearing and the likelihood that there was an angakkuq, or shaman, living in the area. Perhaps it was Ili’s grandfather, whose body was buried in a rocky grave not far from where we were. Then I asked a banal question about whether Inuit actually eat wolf. “Real Eskimo do. But I don’t,” Ili responded. And as if to clarify, he added, “I’m not Eskimo, I’m an Inuk.” “There are probably still Eskimo around here somewhere,” Joetanie added, spreading his arms to the valleys and hills around us. “Do you really think so?” I asked. “Definitely.” In Ili’s classification, “Eskimo” are the people who lived before the arrival of the Qallunaat (non-Inuit) to Inuit lands. Inuit are modern-day, town-dwelling, school-going, hip-hop-listening descendants of those Eskimo, the ones who successfully negotiated land-claims agreements with the Canadian government. We talked for a little while about the possibility that some Inuit families had never been “found” by the eager ambassadors of Canada’s welfare state—the Royal Canadian Mounted Police, the fur trader, and the missionary—and still lived nomadically in the traditional way. Or as Joetanie put it, maybe there were people who were still living in the “stone age.” This reminds me of another story I was told about an ancient camp that was found outside of Pangnirtung: “There was a camp that was found outside of Pang. Because it was really old, they brought the stuff here to the museum. After that you could hear stories—from a lot of people—saying there’s Tuniits9 coming to Iqaluit to get their stuff back. People say they’ve seen them from a helicopter.”10 From the glass windows of a helicopter, people look down on the treeless tundra, rock and lakes and caribou, and see the forms of an ancient people making off with their belongings that had been, in an act of violence, displayed in the local museum. But that’s another story.

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After we had walked deeper into the valley Joetanie announced quietly, “I want to be lost.” “You mean so we could camp here tonight?” I asked, puzzled. “No. Forever.” The longing to be lost, forever, in a geographical space where the “Eskimo” past is written physically on the land—by the graves sheltering in rocky gullies, by the ancient lichen-covered meat caches, and by the abandoned tent rings—expresses not only a longing to belong to a different time, but also, I will argue, a longing to belong differently to time, to have the possibility of building a different relationship to what is, what has been, and what may be.11 So I find my way into the question of “another time” that disrupts the sense of homogenous empty time that can be minutely managed—through the Inuktitut concept of kajjarniq—longing. Longing in this sense is not something that overcomes someone in a fit of melancholy, but something that is actively cultivated, produced for the future. An understanding of kajjarniq reveals a whole temporal structure, one that puts past and future into dialogue, and one that binds a community. Longing for traditional activities— hunting, fishing, camping—is what one does to become an Inuk (Stevenson 2006). The cultivation of longing was apparent at one “healing camp” I attended, which was designed to give single mothers a chance to take their families camping. There was very little scheduled, and activities arose spontaneously; at high tide some decided to go fishing, others went hunting, the children played games on the rocks behind the camp or shyly shadowed an adult. One night in my tent while I was preparing for sleep with my friend and her two young boys, my friend commented, “It is good for them [her boys] to be here. They will learn to long for it when they are older.” I was struck by her words “learn to long.” Here was a mother self-consciously trying to instill longing in her sons by exposing them to traditional Inuit activities. As with many Inuktitut concepts, kajjarnaqtuq has many valences beyond the most literal (cf. Graburn and Stern 1999 on the concept of beauty in Inuktitut). When my Inuktitut teacher emerged from a lunch at the hospital cafeteria to a bright sunny afternoon with views down Frobisher Bay, she raised her head as she said, “Kajjarnaqtuq,” which she translated for me as “Like paradise!” Longing seems to be embedded in the beauty or the correctness of the moment. A beautiful moment is also, always, a potentially longed-for moment. Trying to reconcile these uses of kajjarnaqtuq, I later consulted Jaypeetee Arnakak, for his thoughts on the concept of longing in Inuktitut. He told me that when he complained about the hassle of getting ready to go camping on the land his mother would say, “Imaittuq kajjaqattalaaraviuk [So that you will long for this]”). He continued, “The term kajjaq [in kajjarniq] implies being fully present in the now because one is enjoying oneself, and making a memory to be enjoyed and reflected upon later.” The idea of a time and place where everything feels right is closely linked to the Inuktitut concept of beauty. “Beauty is ‘rightness’ in appearance, performance, taste, and

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sensual experience” (Graburn and Stern 1999).12 In fact, losing track of time, becoming lost in time, thinking without a watch is an integral part of kajjarniq. As Jaypeetee described it, “When a dog is really intent on gnawing on a bone and is oblivious to everything else, we call that kajjaqtuq. . . . We could say that the dog is immersed in his experience. I don’t think kajjarniq is an incidental concept, but a profound reshaping of that which makes us so utterly human: desire.” Such desire is often more important than making sure one gets enough sleep to carry out one’s office job the next morning. The existential psychiatrist Ludwig Binswanger tried to show how mental “pathologies” could be rethought as different styles of existence. Are we ready to think about other ways of being in time without immediately pathologizing them? As I’ve been intimating, I think this requires different ways of being toward death.

CONCLUSION

The question of the clocks does not ultimately need to be resolved. Have Inuit been fully transformed into successful bureaucratic subjects?—have they learned to think like a clock? Have any of us? Why two clocks after all? But I am arguing that there are other ways of being in time, other ways of looking at life in time that point to other possible worlds, times, and selves—worlds, times, and selves that do not always require self-sameness. I recognize that such a project risks being trapped by the paradigm in anthropology of reading the Other as a corrective to the Self. However, in the complexity of the Canadian colonial/postcolonial, these modes of being are constantly encountering one another, constantly grappling with the difference of the other, and so I think there is more at stake. The location of such an Inuit temporality is complex: historically it is located in the memories and remnants of a presettlement past; geographically it is found out on the land away from town,13 but existentially it is carried in the bodies and dreams of Inuit as they live out their lives in what Max Weber pessimistically called the iron cage of modernity.14 For the Inuit that cage seems to have something to do with the biopolitical imperative that they seize “life itself” instead of recognizing the fact that knowing is often doubled: we know and don’t know at the same time; life is and isn’t itself. If Inuit still manage to periodically lose themselves in time—on the basketball court, out on the land—and if the bureaucratic rationality always works to “find” lost Eskimo souls, what does this say about the colonial context in Canada, when the process of Inuit assimilation to southern Canadian norms is still being carried out? At what cost do Inuit youth belong, as they do, to Canadian bureaucratic society, where life itself has become a secular sacred? With what words do we describe the pain of also belonging to another time—that of the unfound Eskimos, of driving around and around, or that of the dreamworld in which dead friends look out at the view? How do we pose the question of suicide alongside the question of time?15

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As a way of concluding I would like to raise the possibility that Inuit suicide is not so much a question of life versus death (of “life itself” or “death itself”) as an answer in one temporality (the time of spinning clocks, driving around, and getting lost) to a question that cannot be formulated by another (bureaucratic time). The clock has no time for suicide (except perhaps as the ultimate sin in a secular world, a node of passivity in the active project of making live), and so it ticks inexorably on. When life is beside itself, the hands of the clocks start spinning uncontrollably, dead friends share a smoke in a dream, and “real Eskimo” are glimpsed through the metal and glass of a helicopter.

N OT E S

1. Foucault in an early publication says something similar: “More positively, an act of signification even the most thwarted, the most elementary, the most bound-up in some perceptual content, opens onto a new horizon” (1993, 40). 2. As Foucault notices, “When someone speaks, we understand what he says not only by a meaningful grasp of the words he uses and the sentence structures he puts into play, but we also let ourselves be guided by the vocal melody, which now modulates and trembles, now assumes the hardness and glow by which we recognize anger” (1993, 38–39). 3. For an excellent discussion of the shifting government policies regarding Inuit housing, as well as the relationship between clock time and rigid-frame houses, see Frank James Tester’s “Iglu to Iglurjuaq” (2006). 4. Nelson Graburn (1982) describes the way the introduction of television also worked to unify settlement time. 5. Laird Christie and Joel Halpern suggest that “[b]y means of linear temporal reckoning we coordinate the pasts of other peoples into our own, we chronologically absorb them as we spatially absorb them through territorial conquest” (1990, 742). 6. Christie and Halpern describe settlement time as “mathematically based, mechanically, electronically or geophysically regulated . . . the clock and calendar time of Western society” (1990, 741). Walter Benjamin would call it “homogeneous empty time” (1968, 261). 7. Inuit time management is a source of consternation for many in the caring professions. Caring, as it becomes an operationalizable concept—something that can be measured and evaluated, fed through a system of best practices and evidence-based science—simultaneously becomes invested in a certain way of being in time. Caring now occurs on shifts, with most shifts concentrated between nine and five. It is no longer professional to care after hours. Implicit in the system of care is that the object of care must learn to mime the caregiver’s attitudes toward time and care. If you—the patient, the distressed, the sick—care enough you will seek out psychologists, social workers, and counselors for your family, and you will be on time to your appointments, and not stay overlong. 8. Clearly not everyone shares the psychiatrist’s sense of the temporality of care. Jaypeetee Arnakak, responding to a conversation we had had about the machinery of care in Iqaluit, told me: “What I really want to do is celebrate the organic development of lives lived [my children’s lives], not the number of times that that life has had to access social programs over the course of existing.”

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9. The speaker added an English plural to the Inuktitut word. 10. The coeval (doubled) nature of the stone-age past and the technological present is also clear in the story of a camp of Inuit “who had not been found”—although their belongings had. 11. It is also evidence of the way nostalgia can be an active refusal of the “disempowering conditions of postcolonial life” (Battaglia 1995, 77). Through nostalgia, the past and the present coexist. 12. Longing, of course, is closely related to nostalgia, the bête noir of pragmatic, forwardthinking subjects of modernity. Nostalgia is understood to imply a distaste for the present, an attitude that Baudelaire famously decried. The criticism of nostalgia (as a cultural form or analytic tool) is that it has no future (Hutcheon 1988; Robertson 1992). Nostalgia, it is said, binds us to the past in unproductive ways. Such alliances (of a self to a vanished past) ultimately betray a decline and decay that ought not to be made public—if one wishes to be productive and, above all, upwardly mobile. Today it is only those left behind by the present who can afford to be nostalgic, because they have nothing left to lose. Currently there is also an attempt to recuperate nostalgia, to bear witness to its possibilities, its spaces of production (Battaglia 1995; Stewart 1998; Strathern 1995). To this end Marilyn Strathern distinguishes between two types of nostalgia, synthetic and substantive. Synthetic nostalgia imagines an irrevocable break between the past and the present and thus longs for the lost Eden. It is a prime exemplar of the decadence of modern affectivity. Substantive nostalgia, on the other hand, always has an effect on the living: it makes explicit “an attachment to a past that is and can only be realized in the present. The act of origin does not, as it were, exist until the [nostalgic] act is done” (Strathern 1995, 111–12). Strathern uses kinship as the prime example of substantive nostalgia: “Substantive nostalgia would come from thinking that kinship is the constitution of the past in the present, the enacting of obligations because a prior relationship exists, belonging to a family because of one’s name, being a child because one’s parents had children” (112). Such nostalgic forms depend on a relationship between past and present that is continually reenacted, rather than a representational break with the past, thus contributing “to the making of persons in the present world” (113). 13. Cathrine Degnen makes a similar point about the contemporary healing properties of country life for the Innu of Sheshatshiu: “Community life and country life are not polar opposites but rather, compose complementary parts of contemporary life in Sheshatshiu. People live in both settings and move between them, but when they talk about being in the country, they speak of a wholly distinct time and space from that of the community” (Degnen 2001, 373). 14. And Weber’s pessimism may still be called for. If in this modern way of reckoning time one must always have a future in order to vouchsafe the present, then to be without a bright future is also to be denied a present. Living in an age that is obsessed with controlling the future as a way of having the present, we may come to see Inuit suicide as a response to a future that attempts to erase surprise, a response that instead pays attention to the poverty and pain of the “now.” The pain, of course, is the shadow of this chapter, a constitutive absence. It is the pain of living in the future’s wreckage, through which the now has become unlivable, in order that the future may be orderly. It is in this sense that suicide answers in one temporality a question posed by another. Suicide is also, whatever else it may be, a leap into another way of being in time, one that questions whether there is always a brighter future around the corner.

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15. Is suicide “to be understood as the painful and unspeakable knot connecting discrepant and juxtaposed registers” (Pandolfo 2000, 118)?

REFERENCES

Agamben, Giorgio. 1998. Homo Sacer: Sovereign Power and Bare Life. Stanford, CA: Stanford University Press. Battaglia, Debbora. 1995. “On Practical Nostalgia: Self-Prospecting among Urban Trobrianders.” In Rhetorics of Self-Making, edited by D. Battaglia, 77–96. Berkeley: University of California Press. Benjamin, Walter. 1968a. “The Storyteller: Reflections on the Work of Nicolai Leskov.” In Illuminations, 83–110. New York: Harcourt Brace & World. ———. 1968b. “Theses on the Philosophy of History.” In Illuminations, 253–63. New York: Harcourt Brace & World. ———. 1999. Selected Writings. Vol. 2, pt. 2, 1931–1934. Cambridge, MA: Harvard University Press. Biehl, João Guilherme. 2005. Vita: Life in a Zone of Social Abandonment. Berkeley: University of California Press. Binswanger, Ludwig. 1993. Dream & Existence. Atlantic Highlands, NJ: Humanities Press International. Christie, Laird, and Joel M. Halpern. 1990. “Temporal Constructs and Inuit Mental Health.” Social Science and Medicine 30 (6): 739–49. Degnen, Cathrine. 2001. “Country Space as a Healing Place: Community Healing at Sheshatshiu.” In Aboriginal Autonomy and Development in Northern Quebec and Labrador, edited by C. H. Scott, 357–78. Vancouver: University of British Columbia Press. DHWC (Department of Health and Welfare Canada). 1960. Eskimo Mortality and Housing. Ottawa: Department of Health and Welfare Canada, Indian and Northern Health Services Directorate Canada, Northern Administration Branch. Foucault, Michel. 2003. Society Must Be Defended: Lectures at the College de France, 1975–76. New York: Picador. Graburn, Nelson. 1982. “Television and the Canadian Inuit.” Etudes/Inuit/Studies 6 (1): 7–17. Graburn, Nelson, and Pamela Stern. 1999. “Ce qui est bien est beau: Un regard sur la beauté chez les Inuit du Canada.” Terrain 32:21–36. Harrison, Phyllis. 1962. “Eskimos in Transition.” North 9 (5): 14–16. Hutcheon, Linda. 1988. A Poetics of Postmodernism: History, Theory, Fiction. New York: Routledge. Pandolfo, Stefania. 2000. “The Thin Line of Modernity: Some Moroccan Debates on Subjectivity.” In Questions of Modernity, edited by T. Mitchell, 115–47. Minneapolis: University of Minnesota Press. Robertson, Roland. 1992. Globalization: Social Theory and Global Culture. London: Sage Publications. Stevenson, Lisa. 2006. “The Ethical Injunction to Remember: Memory, Cultural Survival and Ethics in Nunavut.” In Critical Inuit Studies, edited by P. Stern and L. Stevenson, 168–83. Lincoln: University of Nebraska Press.

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———. 2012. “The Psychic Life of Biopolitics: Survival, Cooperation, and Inuit Community.” American Ethnologist 39 (3): 592–613. Stewart, Kathleen. 1998. “Nostalgia—A Polemic.” Cultural Anthropology 3 (3): 227–41. Strathern, Marilyn. 1995. “Nostalgia and the New Genetics.” In Rhetorics of Self-Making, edited by D. Battaglia, 97–120. Berkeley: University of California Press. Tester, Frank James. 2006. “Iglu to Iglurjuaq.” In Critical Inuit Studies, edited by P. Stern and L. Stevenson, 230–52. Lincoln: University of Nebraska Press. Willis, John S. 1955. “Preliminary Report of the Medical Party, ‘C. D. Howe,’ July 1955.” National Archives of Canada (Ottawa), RG85, vol. 1903, file 1009–13(1).

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41 TRACES OF DESTRUCTION AND THE THREAD OF CONTINUITY IN POSTGENOCIDE CAMBODIA Anne Yvonne Guillou

F O R G E T T I N G A N D S U RV I V I N G

When I settled in Cambodia in September 1990, I felt as if I were moving into Jean Delvert’s book Le paysan cambodgien (The Cambodian Peasant). This classic study had been the major reference for students of Cambodia since its publication in 1961. Drawing on data gathered at the end of colonial times in the early 1950s, it describes a peaceful, simple world in which Buddhist villagers make their living from their rice fields and their natural environment. Of course, in 1990 I was not allowed to live outside Phnom Penh since many areas in the country were still controlled by the Khmer Rouge guerrilla forces. But during my short but frequent trips outside the capital, the palm sugar trees planted on the dykes separating the rice fields, the slow movement of the oxcarts, the serene smiles of the people met on the road gave me a strange feeling that the Cambodians— particularly those living in the countryside—had gone through the totalitarian Democratic Kampuchea regime (1975–79) without any major trouble, confirming Delvert’s imaginary view of a forever unchanging Cambodia. It seemed to me that no mark had been left of the genocide that had killed—in one way or another—almost a quarter of the Cambodian population less than fifteen years earlier. Extreme poverty and insecurity—including thousands of land mines—were of course devastating, but, rather than a clear trace of the Khmer Rouge destruction, they could be seen as a consequence of the political and economic isolation of Cambodia as much as of the military activity of the opposed armed factions (including the still-active Khmer Rouge guerrilla forces). The most outstanding traces were the huge number of

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widows struggling to feed their children and to bring them up. I was also struck by the way people ate their meals. They did so quickly and in silence, with serious expressions on their faces. Even during wedding ceremonies, guests ate as if their food could be stolen, as if it was the most important thing in their lives, as if they were making up for lost time or were eating for those who had starved. On the other hand, people were obsessed by the necessity to save money. Money—or more often gold, whose exchange rate was more stable and which was easier to hide1—and the cost of goods were the main topics of conversation. My Cambodian friends could spend hours asking each other how much they had spent on a bunch of bananas or a piece of fabric at the market, not to mention a motorcycle or a house. The few foreigners who lived in Phnom Penh at that time were bored with this and sought conversations on less materialistic topics. In hospitals, Western medical professionals working in NGOs, for example, were upset by what they called the lack of medical ethics and the indifference to the patients’ comfort and recovery shown by their Cambodian counterparts (Guillou 2009). Many people had remarried and had changed their names. Changing one’s name is a common practice among Khmer when one seeks to change one’s life and “upgrade” one’s destiny. In the countryside, paddy, fruits, and vegetables were planted on some old killing fields so that the ghosts would leave these places and find new dark, uninhabited shelters. Instead of the obsessive recollections of the traumatic past that I had been led to expect, I was discovering people using their energy to make a living and to rebuild their lives. Even as recently as in 2010, in the village where I work in western Cambodia, I met a man in his sixties who had never spoken to his new wife and children about his former deceased family. They sat around us and listened to their father’s story for the first time. Although speaking about the genocide and personal loss was not taboo, people acted as if it was better to remain silent if they wanted to forget. I came to the conclusion, with Maurice Bloch (1996, 229), that “there is not a generalized need of human beings to remember the past,” and I spent the next fifteen years doing field research in medical anthropology in Cambodia without directly addressing the question of the Khmer Rouge genocide. In this chapter, I have tried to understand why I feel it is so hard to analyze the effect of the genocide on Cambodian society from an anthropological point of view. The answer that I have found to date is twofold. First, it is linked to how people express painful emotions. It brings us to the issue of forms of narratives of the genocide and perceptions of time and continuity in Cambodia after the Pol Pot regime. Second, when I arrived in Cambodia, more than ten years had passed since the massive destruction occurred, and people had already set up their own collective resilience devices, which helped them to build a bridge between that past and their future. This resilience system, as I call it, is framed in the Khmer religious system. Within it, relationship to the land is of critical importance in the elaboration of a pragmatic idea of continuity—in particular through the popular Khmer concept of boromey (“potency,” “sacred energy”), which I explain later.

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EXPRESSIONS OF SUFFERING AND LOSS AMONG KHMER PEOPLE S T E R E OT Y P E S

In 1990, one could hardly find a Cambodian family in which all family members had survived. Everybody I spoke to had lost a sister, a husband, a child, a cousin, or friends, colleagues, or neighbors.2 During my first four-year stay, it was almost a rule that people I met introduced themselves and soon described what they had gone through under the Pol Pot regime. But they did so in a very specific way that sounded unfamiliar and almost shocking to a young and inexperienced anthropologist. Indeed, people expressed themselves in a standardized, stereotyped way, using the same words, the same official expressions that I had heard many times in the mouths of members of the Cambodian People’s Party. In particular, the official words “three years, eight months, and twenty days” were repeated over and over to underline the duration of the Khmer Rouge regime. People would describe in the same stereotypical way the ordeal they had gone through by giving a detailed account of the number of cans of rice the cook was allowed in the rice porridge—and how, over time, the porridge contained less and less rice and more and more water and banana trunks and leaves, which is usually food of the pigs. In contrast, although it was not a taboo, most people would not speak spontaneously of the death of their family members until they were asked questions about it. I did not know what to do with all these stereotyped stories, since they seemed unreal and far from expressing what I considered as true emotions. Later, after I read Veena Das’s work, I came to understand that the Cambodian people protected themselves from overwhelming sorrow by using the official words they had heard so many times in official discourses on the radio and at the party meetings they had to attend. Moreover, in the 1980s and 1990s, talking about the suffering caused by the Khmer Rouge regime by using these stereotyped expressions was politically correct and encouraged by the government. It was the expression of national identity and political affiliation to the ruling Cambodian People’s Party with which the expression of personal suffering was merged. These stereotypes were less and less used over the years when the political game evolved following the 1991 Paris Peace Agreement between the four opposing armed factions, including Democratic Kampuchea. At this time the state memorials (as well as the former Security Prison S-21, transformed into a genocide museum in Phnom Penh)—built all over the country in order to gather human remains, to use as proof of genocide, and to build a sense of political collective memory—were gradually neglected, and many of them fell apart (Guillou 2012). In one of his essays about time and narratives, Maurice Bloch (1998) argues against the central position that Paul Ricoeur, Marshall Sahlins, and Michel de Certeau accord to textuality in their work on time perception. For example, Ricoeur writes in his most

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famous books on this issue: “Time becomes human time only in so far as it is constructed in a narrative and at the same time a story is significant in so far as it accords with the experience of living in time” (Ricoeur 1983, 1985, as translated in Bloch 1998, 101, following the French version). As Bloch has argued, anthropologists learn from their fieldwork that many patterns of representation of the past can exist in one society. In Madagascar, where eighty thousand people were killed during the anticolonial revolt of 1947, the Zafimaniry use at least three models of narratives suitable for different contexts. The tantara (“history”) mode “tends to reduce events to exemplary tales where the moral structures of the society win against the requirement of transmitting information” (Bloch 1998, 108). On the other hand, the anganon transmitted by the ancestors “refer[s] to events which take place in an unspecified past and concern fantastic beings as well as normal people” (108). And there is still a third category of evocation of the past, but, unlike the others, it is not expressed in a verbal narrative frame. Bloch discovered it when he was sitting in a shelter with an old man, waiting for the rain to stop in a valley. The man then gave Bloch a detailed account of what had happened in this place during the 1947 rebellion in a totally different style from the two previous narratives. The account was focused on events and inspired by the topography of the landscape, which lay before them. In Cambodia as well, verbal narratives are only a small part of the production of memory. Most of the expressions of “painful memories” (Graeber 1997) have been more structured by the idioms of rituals and religion, which in turn were used to reassert the moral and social order.

IDIOMS OF RITUAL AND RELIGION

Several facts can explain why the expression of painful emotions related to the genocide seemed to me so poor and impersonal in the early 1990s. First of all, the suffering caused by the death of relatives is hardly ever expressed in terms of regret, loss, and absence, according to Theravadin Buddhist values. Feeling bad about the absence of loved ones and expressing it would prevent the dead from leaving . the human world and entering the Buddhist cycle of conditioned existence (samsāra) in order to be reborn. The dead person would stay near his or her relatives as a ghost and would not be able to gain a higher existence. In peaceful circumstances, during “normal” agony, religious assistance is offered to the dying person by reminding him or her of the principle of impermanence (anicca) and helping him or her to leave the material world. Then, the children’s duty of the utmost importance is to accompany the dead person on his or her way by “dedicating merits” (oteuh kosal) to them in order to make their future existence as good as possible. In Khmer popular religious practices, the most pious act consists in making offerings to the Buddhist monks. This “produces” merits, which can be sent to the dead by calling their names during a ritual called bangskol. This ritual can be performed even in the absence of the corpse, which was the case for the great majority of the people who died under the Khmer Rouge regime. It is organized in many

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circumstances, but the major occasion is the annual festival called the Offering of the Rice Balls (Dak Ben), which ends with the biggest ceremony, the Gathering of the Rice Balls (Phchum Ben), when the dead come to meet the living in the monasteries during the fifteen-day period of the waning moon of the photrobot month (September–October). On this occasion, food is offered to the unknown, as well as to the family’s “souls.” When this festival was authorized again by the government in the early 1990s, I witnessed a huge relief among the population, as if the atmosphere had suddenly become lighter and quieter (Guillou 2012). During Dak Ben rituals (and on many other occasions), year after year, the victims of the Khmer Rouge who died of “bad death” (i.e., fearful and untimely death) are being cared after and are progressively reintegrated into the “normal” life-death cycle. At the same time, when people perform these rituals, they are reminded of the general ideological framework of Buddhism in a similar way, as Maurice Bloch has described concerning the tantara mode of narrative, which is “very poor on information but very strong on the reestablishment of order” (1998, 105). During the fourteen nights of Dak Ben indeed, when the faithful walk around the sacred sanctuary (vihear) of the monastery (wat) before dawn and throw rice balls in the eight directions for the wandering spirits (pret), monks or lay specialists chant a famous poem called paraphevesot (Parābhavasutta in Pali), which recalls the twelve kinds of bad actions that lead to “destructions” (vineah) and the descent to lower worlds. This helps to place destructive events within the general framework of Buddhism and restore moral order by reminding people how to behave. Veena Das writes, of healing and death, that “instead of the simplified images of healing that assume that reliving a trauma or decathecting desire from the lost object and reinvesting it elsewhere, we need to think of healing as a kind of relationship with death” (Das 1997, 78). Echoing her writings, in postgenocide Cambodia the expression of suffering and the possibility of relief from it are shaped by the crucial value of one’s duty toward one’s parents, whether dead or alive, in gratitude for all the personal sacrifices they have made as parents (deung kun, “being aware [of parents’] good acts”). In the perception and emotional economy of most of the Khmer people I have met over the years, their suffering is caused by their incapacity to properly accompany their relatives when they were dying. On this point, the Khmer moral economy is similar to that of the Vietnamese after the so-called Vietnam War: “[T]he souls of the dead can suffer from the enduring effects of a traumatic historical experience.” In the United States, conversely, the same collective painful experience3 is given meaning and expression through the idiom of the psychic trauma of war veterans and posttraumatic stress disorder (PTSD) syndrome (Kwon 2012, 234). And indeed in Cambodia, most of the relief activities consist of rituals for the dead. Other characteristics of the expression of suffering are related to perceptions of karma and misfortune. The question of why so many people died a bad death during the Khmer Rouge regime is embarrassing. It is also a complex question that deserves many different

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answers. These are embedded within the complex religious system that largely consists of a “localized” version of Theravadin Buddhism influenced by cults of several kinds of “spirits,” including ancestors, land-guardian spirits, lineage-guardian spirits, and so on. The general and theoretical standpoint of karma4 is that living beings—including human beings—(sat, from Pali satva) suffer or live a happy life according to their past actions and thoughts. One might infer from this formulation that people who died under Democratic Kampuchea disappeared as a result of their own karma. Indeed, I have had several conversations with Khmer monks and lay specialists of ritual (achar) about the “careers” of those who died, which confirmed that this is one correct interpretation of the bad deaths. In particular, I studied a text from the Khmer version of the Suttapit.aka (one part of the Theravada canon) with a young monk.5 The text goes through all the categories of wandering souls (pret) and describes their ordeal as pret according to their bad actions in a previous life. However, in their everyday lives, ordinary people refer to this theory in a positive way and do not focus on the dead of the Pol Pot regime. For example, one night when I was leaving the village at dusk on my motorcycle, I went past a friend gardening in front of her house. She asked me if I was not afraid to ride alone at night. I answered that the village was safe, and she kindly said that it was safe for me because I was a “person with Buddhist merits” (neak mean bon)— probably because I asked many questions about religion. Villagers also refer to Buddhist merits when they speak about high-ranking officers who are supposed to have gained a good present life as a result of their past actions. In a few cases, in informal conversations at friends’ houses, I heard them telling stories of men who could not be killed by the Khmer Rouge even if they tried to drown them or beat them on the neck with a stick. These people were said to be protected by their huge accumulation of Buddhist merits (bon). Sometimes, things were less explicit. Once in Bakan monastery (see below), a man rushed at the shrine of the guardian spirit of the monastery where I was sitting with the (human) keeper of the place, and my host and he made an offering. The newcomer was visibly very moved. He explained to us that it was the first time he had had the opportunity to come back there since the Pol Pot regime. He was caught there when the revolutionaries took power in 1975. Later on, in a dream he saw the Buddha rising up from an old tower (prasat) in the middle of the monastery. The Buddha showed him the direction he should take in order to find a place where the Khmer Rouge were not too brutal and where he could live. He survived, he said, because of this protection. Instead of “thinking too much” (ket chraeun pek) about how and why their relatives died,6 people adopt a pragmatic attitude and transfer as many Buddhist merits as they can to their vanished relatives. During the 1990s I often heard people develop the pessimistic view that Cambodia as a whole was experiencing the fruition of its collective karma. A popular etymology of the country’s name, Kampuchea, was given to me on a few occasions. Generally speaking, playing on words and syllables (particularly as spoonerisms) is widely appreciated as a form of humor. Such a play on words is made easier by the structure of the Khmer language, which is monosyllabic and creates words by affixation. Polysyllabic

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words can almost always be truncated into meaningful syllables, thus creating imaginary etymologies. People often indulge in the creation of such etymologies when choosing children’s names, especially in urban and educated milieus, where the personal names are longer and more sophisticated (Guillou 1999).7 The imaginary etymology of Kampuchea8 stated that while this name meant “the descents of Kambu,” a mythical ancestor of Indian origin,9 another hidden meaning could be found. It reads Kampuchea as kammpuch-chea, which can be translated as “the race of (bad) karma.” The fact that “Khmer have killed Khmer”—which was among the stereotypical phrases that I heard in the 1990s but is less frequently heard today—brought a sense of collective shame and failure that was not easy to express in view of the fact that many people had placed their hope for social justice and national grandeur in the Cambodian communist movement in the 1960s, when it disseminated its propaganda among urban intellectuals as well as peasants (Chandler 1991). Destiny is another side of Khmer religious popular thought. Besides the abstract concept of karma, which nobody can know precisely and have a quick effect on, (mis)fortune (kruh) is perceived as a destiny with more material factual qualities. Kruh today means “bad luck.” It is like a contagious disease that would “infect” you if you “called” the kruh by talking too much about it or by talking too much to people who are experiencing the effects of kruh. Besides this perception of kruh as a material element, its Sanskrit origin, graha (“planet”), is still noticeable because it is associated with the planet presiding over the day of one’s birth (Ang 1986, 80). In the case of repeated traffic accidents, disease, death, or bad business, for example, people perform a ritual called “cutting kruh” in order to relieve themselves from bad luck and symbolically change their lives into new ones.10 The ritual is organized in certain traditional monasteries by lay specialists of ritual (achar) and monks. A human shape is formed using handfuls of raw rice thrown on a white fabric laid on the floor. The amount of rice used equals the number of years of the “patient’s” age and thus represents his or her body.11 Then the “patient’s” name is called while the small mound of rice is remodeled into a new human shape and the white fabric is torn up. This symbolizes the metamorphosis of the “patient’s” “name-physical form” (Pali: nāma-rūpa), which is considered—along with the age—as the main component of the individual (at least in this ritual and some others). In the second part of the “cutting kruh” ritual, the lay specialist stretches three white cotton strings around the “person with kruh” and chants Buddhist prayers along with monks sitting around the “patient.” These prayers are considered as protective ones, asking the bad spirits (like priey and beysach) to stay away and asking for well-being and happiness. Then the most powerful monk of the monastery sprinkles holy water on the “patient” while chanting magic protection formulas. In this first section, I have aimed to show that forms of silence do not mean that there are no memory-production and transmission or symbolic-reconstruction efforts. But my own insistence in wondering why and how it has been possible for so many Cambodians

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to appear detached from the traumatic past clearly deserves further research. One of the approaches is to be found in the “hegemonic remembering” (Kidron 2009) system with regard to Cambodia, introduced by Western NGOs and revivified by the media in the wake of the establishment of the UN-sponsored Khmer Rouge Tribunal in Phnom Penh since 2007. The “Eurocentric psychosocial norm of voice” that Carol Kidron reexamines in her own “ethnography of silence” among children of Holocaust survivors gives another possible answer. It remains to find other possible ways to explore “these silent traces [that] maintain an intimate and nonpathological presence of the [genocide] death-world in the everyday life-world” (Kidron 2009, 6). I will try to do so in the second section. When massive destruction reaches the point that it did in Cambodia in 1975–79 and to a lesser extent in the years before and during the U.S. bombing of the country— destruction of lives, family ties, religion, and homes—one wonders if “all societies ‘recover’ or [if ] some merely capitulate and disappear” as such, and one also wonders “what is seen as essential and what is seen as liable to be altered or abandoned, both in local discourses and in practice” (Guillou and Vignato 2012, 165). In the second section I will draw on my ethnographic work and argue that the “local narrative styles” (Das and Kleinman 2001, 20) used by the Khmer peasants grow from their link with the soil. These links have provided the means by which their communities have been able to gain vitality as well as a sense of continuity after massive death and social destruction. Recovering has been more difficult when the link with the land has been cut, as has happened for the refugees.12

P E R C E P T I O N O F H I S T O RY T H R O U G H P OT E N T P L A C E S : T H E N OT I O N O F B O R O M E Y (“ P OT E N C Y,” “ S A C R E D E N E R G Y ”)

In 2007 I started a new research program that directly addressed the question of the traces of the genocide. I looked for a village that would agree to welcome me during my field trips. I had short-listed two areas, in the provinces of Pursat and Kompong Thom, where I prospected in search of such a village. I had selected these areas because they had experienced harsh treatment under Democratic Kampuchea and were representative of average Cambodian village life, with subsistence production of paddy cultivated in nonirrigated rice fields by Khmer people.13 A friend and former student of mine introduced me to the director of the Department of Culture of the province of Pursat, who (in addition to other things) was also in charge of the shrine of Grandfather Khleang Mueng, one of the most famous and potent land guardian spirits (neak ta) in Cambodia. The director brought me to Grandfather Khleang Mueng’s shrine, and that became the entry point of my new research. I soon met a young female teacher in Kompong Tralach,14 a village near the land spirit’s sanctuary. Her family was one of the founding families of the village. She became my host as well as my guide in the area, along with her fortyeight-year-old mother and eighty-year-old grandmother. Both women showed interest in my research, although neither of them had had much schooling.

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Lok Ta Khleang Mueng’s shrine has been progressively renovated by the Pursat Department of Culture since 1979. Today it is magnificent, and frequented not only by villagers, but also by high-ranking dignitaries of the regime and travelers passing along the (small) Phnom Penh–Battambang national road. Along with some other (but not all) land guardian spirits, Lok Ta Khleang Mueng shares the feature of being a former human being and a war chief. As a military commander, he led the troops of the Khmer king known locally as Ang Chan Reacha (Paramarājā II) against a Siamese army in the sixteenth century. Khleang Mueng is venerated throughout the country as a national hero, since oral legends, backed by the Royal Chronicles, claim that he committed suicide in order to go to the world of the dead and raise an army of ghosts to rout the Siamese army that had come to support the Khmer usurper Kan. Grandfather Khleang Mueng’s shrine is now the center of a mythic-historic map that structures and gives sense to the lived space of the village area. It tells the story, embodied in the landscape and its toponymy, of the violent and bloody wars between the Khmer and the Siamese during the troubled sixteenth century,15 when the kings of Cambodia were expelled from Angkor and temporarily stayed in the province of Pursat on their way to the south of the Tonle Sap Great Lake, where they built their new capitals. Indeed, within a one- to five-kilometer radius around Khleang Mueng’s shrine, about ten sites are associated with this history and are considered as potent places. For example, a small Buddhicized shrine is perceived by some villagers as the home of the personal spirit (kru) of Khleang Mueng but now transformed into a land guardian spirit;16 the monastery called King’s Monastery (voat Luong) shelters a funeral monument said to contain the ashes of King Ang Chan’s child. In Bakan Monastery (which was a political prison around which hundreds of corpses were found after the Khmer Rouge regime) an immense and potent Bodhi tree growing on an ancient tower (prasat) is believed to have floated upstream to Pursat Province from the royal city of Oudong because it was overcome with homesickness. Another place, called the Monastery of the Merit-Filled Bodhi Tree (voat Po Mean Bon), is perceived as highly potent by the villagers because of its sixteenthcentury tower (called balang),17 where the villagers say that a long-dead Bodhi tree miraculously started to grow again when the Khmer army was about to do battle four hundred years ago. This miracle was interpreted as a portent of victory by King Ang Chan. All these sites are regarded as potent places but are also seen as ambivalent by people. Villagers always act cautiously when they visit these places and must ask for permission if they want to cut a tree, gather fruit, or even have a rest and chat with friends there. Their behavior and words are also strictly self- or mutually controlled in order to respect the places—some of them being personified as a “master of the land” (like Khleang Mueng). Stories circulate of people who were severely punished because they broke a rule. Grandfather Khleang Mueng himself is said to have killed the Khmer Rouge soldiers who dared to cut trees and destroy his shrine in order to dig a canal, implementing the Maoist policy of destroying unproductive sacred spaces, and to give a boost to rice production by setting up irrigation systems. Potent places can, however, also protect

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individuals, communicate with them through dreams, and help them in their daily lives in exchange for offerings. In the perception of many people, land guardian spirits such as Khleang Mueng are associated or even merged with “sacred” energy that stems from the land. This is one of the key features of the popular spirit cult in Cambodia and other Southeast Asian societies (Mus 1934). The potency of all those places stems from a form of circulating spiritual energy called boromey emanating from certain objects, places, trees (especially big old ones), and stones, people, or spirits. This is not the place to analyze in detail the etymology of boromey. Suffice it to say that this Khmer word comes from the Sanskrit term paramita (the six virtues cultivated by a bodhisattva in order to become a Buddha in Mahayana Buddhism) and the Pali term parami (in Southeast Asian manuscripts, the ten powers left by the Buddha on earth to protect the dharma for five thousand years) (Bizot 1994). This etymology provides an insight into the process of Buddhicization of a pre-Buddhist concept of energy stemming from the land itself in association with spirit cults. Boromey is made of all the elements that are central to Cambodian social and symbolic structures: kingship, Buddhism, and spirit cults in association with the cult of the dead and the natural environment. All the striking events of the past and present as well as the villagers’ daily lives are framed by the mythic-historic geography punctuated by sites full of boromey. Moreover, events that occurred during the Khmer Rouge period—but also during French colonization—are mentally drawn on this map and remembered through spatial experiences. One day, I witnessed a woman begging for justice at the small Buddhicized shrine of Khleang Mueng’s personal spirit mentioned above. She prayed to the land spirit to help her in a dispute in which a high-ranking local government officer had dispossessed her neighbor of his land. (Land grabbing is a major issue in Cambodia today.) Another day, I was having lunch with friends at their home when the village head came and asked for a financial contribution. He was organizing a collection because a neighbor had dreamed that Khleang Mueng was angry with the villagers, who were mean and did not make offerings to him, while outsiders were far more generous. This dream in fact occurred in the context of a latent conflict between the Department of Culture and the villagers because the latter felt that they were gradually being dispossessed of their traditional rights over the shrine. As a spatiotemporal concept, boromey (spiritual, sacred energy) is instrumental in relating the past and the present in Khmer life. Generally speaking, the Khmer villagers interpret the global consequences of the Khmer Rouge regime as a decline of boromey due to the physical destruction of potent places and the objects related to them, such as the toppling of Buddhist statues, the felling of big old trees (which has increased in the past fifteen years, with massive deforestation), the destruction and even simply the neglect of the shrines. In Kompong Tralach, some villagers say that Grandfather Khleang Mueng himself has left his shrine, together with his wife, sons, and army, in order to reach a more potent dwelling in the Cardamom Mountains. Others think that he is still

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there but has become weak: no tigers are seen around anymore, and branches no longer move miraculously by themselves to protect the shrine. The Merit-Filled Bodhi Tree Monastery is also more sap (“tasteless,” “out of potency”) than before. The three old lay officers at the monastery told me that the 1.2-meter-high laterite foundations of the tower in the middle of the monastery, probably dating back to the sixteenth century,18 were far less potent than in the past. In particular, this tower has ceased to lend the precious tableware “and all other ancient kings’ objects made of gold, silver, and sapphire” that it used to lend to the villagers for their rituals. Now, the tower remains doggedly closed because “people have become bad, they have lost honesty, they have not brought back the precious plates and flasks.” At the same time, new significant places are born in relation to massive human death. Indeed, some of the sites at which corpses were simply thrown into mass graves by the Khmer Rouge are in the process of being constructed as potent places, similar to those of the land guardian spirits (neak ta). “Bad death,” in particular, often produces huge amounts of ambivalent energy that merge (in this case) with the energy of the earth. This energy is that of the lives that were cut short before the natural end of the “string of life” (khsae chivit). It is in a way the energy of unlived life. The pits and mass graves constructed as neak ta–like potent places are taken care of like any other place of neak ta. A small house is constructed where offerings of food, cigarettes, incense, and sometimes water or alcohol (following the neak ta’s tastes) are prepared. And one or several villagers communicate with the neak ta through dreams from time to time.

T H E R E G E N E R AT I O N O F L I F E

Living together after the Khmer Rouge genocide means rebuilding ties with the dead and helping them get to a higher world.19 It also means, among other things, rebuilding ties with the native land, where history is embodied, and developing the spiritual energy, boromey, by all means possible—rebuilding the shrines of the land guardian spirits; organizing sumptuous annual festivals to pay tribute to them (the presence of high-ranking officials or even guests of royal blood enhances the brilliance of the ritual); finding ancient statues that have been thrown away or stolen and putting them back in their old place at shrines near the new statues; protecting the trees and planting Bodhi trees—and besides all this activity, giving alms to the monks20 and helping to rebuild Buddhist monasteries, stupas, and statues, for one’s own sake, one’s parents’ next life, and Cambodia’s collective destiny (Marston 2008). However, all these activities are given new meanings related to today’s problems such as land-dispute issues, massive logging, and escalating socioeconomic gaps between urban and rural dwellers. Cambodian peasants have been doing so for twenty years now, and the fruits of their efforts can clearly be seen. Near Grandfather Khleang Mueng’s shrine, his wife, Dame Khan Khieu, has a smaller shrine where a big, old samrong tree (Sterculia foetida) was cut down by the Khmer Rouge. In 2010, the head of the shrine told me that a shoot has slowly begun to grow from the dead stump.

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N OT E S

1. The Pol Pot regime had abolished currency and had blown up the National Bank. Witnesses remember the dollars and riels flying all over the building during the mass exodus from Phnom Penh. People who had been able to hide small gold bars in their clothes proved more likely to survive. However, Lon Nol riels were still on the streets of Phnom Penh in 1981. 2. Almost one-quarter of the overall Cambodian population (around 1.7 million persons) died from execution, starvation, overwork, untreated diseases, and other abuses as well as internal purges during Democratic Kampuchea. 3. The experience was not exactly the same, however, as Heonik Kwon rightly points out, because the war occurred on Vietnamese soil while most of the American people watched it at a distance. 4. Kamm (“karma”) or kammaphol (“fruits of the karma”) in current Khmer always refers to bad actions that bear bad fruit. 5. I wish to thank Bhikkhu Logn Sok Chea, from Leap monastery, Battambang, for his help. 6. “Thinking too much” is said to bring mental disorder. 7. For example, Novann Khemari is the granddaughter of Non and Van. Her personal name is constructed after her grandparents’ names, but it also means, she says, “the Khmer vessel of high rank” because Novann can be decomposed as neavea (literary word for “vessel”) and van. n. a (from Pali “color of skin” [showing high rank] and also one of the four wishes wished during New Year celebrations) and khemari (imaginary feminine Pali form of the word “khmer”). 8. Kampuchea and Cambodia are two names of the same origin. Kampuchea is the official name of Cambodia in the Khmer language. In the late 1970s and 1980s, the use of the word Kampuchea in English often denoted left-wing political affiliation. 9. In one of the two versions of this myth, Kambu, also known as Kaundinya, comes from India. 10. Ang (1986) reports that this ritual can also be used in a preventive way if the planet of one’s day of birth is predicted (by a fortune teller) to have a bad influence at some time. 11. A monk told me that the amount of rice is often changed and upgraded (more handfuls of rice than real years of age of the patient) in order to extend the individual’s longevity. 12. The anthropologist Fabienne Luco has done extensive fieldwork over a span of more than ten years in a village in the Angkor area. In her PhD thesis (in process) she underlines the importance of space in structuring the whole social life. Her findings corroborate what I have observed myself in western Cambodia. 13. Khmer people represent around 90% of the population of Cambodia. 14. The name of the village has been changed in order to respect the anonymity of the people I have met. 15. Among other examples, two hamlets are locally called Citadel of Victory (Banteay Chey) and Siamese Camp (Chumrum Siem). 16. This place is an example of deep interaction between various religious practices, including Buddhism in rural Cambodia. Indeed this shrine looks today like a Buddhist sacred sanctuary (vihear), with its old sacred markers (seyma) (snatched during the Pol Pot regime). Statues of the Buddha Sākyamuni are placed on the altar, including the remains of a big one

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whose face has been hit with an axe (during the same period). But on the ritual ground, this place is perceived as the shrine of a land guardian spirit (neak ta) where collective prayers to bring rain as well as individual prayers for protection and justice are offered. 17. Although this site has not been dated by archaeologists, it is probably one of the places mentioned in the Royal Chronicles telling the story of King Paramarājā II and Khleang Mueng. 18. No dating has ever been made by archaeologists, but the Merit-Filled Bodhi Tree Monastery is identified in the Interactive Map for Archaeological Khmer Sites (CISARK) of the Ecole Française d’Extrême-Orient (French Institute for Oriental Studies). I have compared the information (including the distances separating each place) provided in the Khmer Royal Chronicles about the sixteenth-century war between a Siamese army and the Khmer king Ang Chan assisted by the war chief Khleang Mueng (Khin Sok 1988, 153, 157, 290) with the places I describe in this chapter. It is likely that these events actually occurred in this village. 19. I do not address here the issue of communities where former Khmer Rouge and non– Khmer Rouge villagers have to live together. For an anthropological account of such a context, see Zucker 2008. 20. Reformist trends in Theravada Buddhism are now developing again in Cambodia, carried out by a young generation of educated monks. They denigrate the old beliefs in land spirits and the taste for offerings to the monks and praise personal development through the learning of the dharma. It is thus likely that they will offer an articulated alternative of understanding the genocide in the years to come.

REFERENCES

Ang, Choulean. 1986. Les êtres surnaturels dans la religion populaire khmère. Paris: Cedoreck. Bizot, François. 1994. “La consécration des statues et le culte des morts.” In Recherches nouvelles sur le Cambodge, edited by François Bizot, 101–39. Paris: Publications de l’EFEO. Bloch, Maurice. 1996. “Internal and External Memory: Different Ways of Being in History.” In Tense Past: Cultural Essays in Trauma and Memory, edited by Paul Antze and Mickael Lambeck, 215–33. New York: Routledge. ———. 1998. “Time, Narratives and the Multiplicity of Representations of the Past.” In How We Think They Think: Anthropological Approaches to Cognition, Memory, and Literacy, edited by M. Bloch, 100–113. Boulder, CO, and Oxford: Westview Press. Bloch, Maurice, and Jonathan Parry, eds. 1982. Death and the Regeneration of Life. Cambridge: Cambridge University Press. Chandler, David P. 1991. The Tragedy of Cambodian History: Politics, War, and Revolution since 1945. New Haven, CT, and London: Yale University Press. Das, Veena. 1997. “Language and Body: Transactions in the Construction of Pain.” In Social Suffering, edited by Arthur Kleinman, Veena Das, and Margaret Lock, 67–91. Berkeley: University of California Press. Das, Veena, and Arthur Kleinman. 2001. Introduction to Remaking a World: Violence, Social Suffering, and Recovery, edited by Veena Das, Arthur Kleinman, Margaret Lock, Mamphela Rawphele, and Pamela Reynolds, 1–30. Berkeley: University of California Press. Graeber, David. 1997. “Painful Memories.” Journal of Religion in Africa 27 (4): 374–400.

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Guillou, Anne Yvonne. 1999. “Noms personnels et termes d’adresse au Cambodge.” In D’un nom à l’autre en Asie du Sud-Est, edited by Josiane Massard-Vincent and Simone Pauwels, 245–74. Paris: Karthala. ———. 2009. Cambodge, soigner dans les fracas de l’histoire: Médecins et société. Paris: Les Indes Savantes. ———. 2012. “An Alternative Memory of the Khmer Rouge Genocide: The Dead of the Mass Graves and the Land Guardian Spirits (neak ta).” In Life after Collective Death in SoutheastAsia: Part 1, special issue of South East Asia Research (SOAS, London), vol. 20, no 2: 207–26. Guillou, Anne Yvonne, and Silvia Vignato. 2012. Introduction to Life after Collective Death in Southeast-Asia: Part 1, special issue of South East Asia Research (SOAS, London), vol. 20, no 2: 161–74. Khin, Sok. 1988. Chroniques royales du Cambodge. Vol. 2. Paris: Ecole française d’ExtrêmeOrient. Kidron, Carol A. 2009. “Toward an Ethnography of Silence: The Lived Presence of the Past in the Everyday Life of Holocaust Trauma Survivors and Their Descendants in Israel.” Current Anthropology 50 (1): 5–27. Kwon, Heonik. 2012. “Rethinking Traumas of War.” In Life after Collective Death in SoutheastAsia: Part 1, special issue of South East Asia Research (SOAS, London), vol. 20, no 2: 227–37. Marston, John. 2008. “Constructing Narratives of Order: Religious-Building Projects and Moral Chaos.” In At the Edge of the Forest: Essays on Cambodia, History, and Narrative in Honor of David Chandler, edited by Anne Ruth Hansen and Judy Ledgerwood, 163–93. Ithaca, NY: Cornell Southeast Asia Program Publications. Mus, Paul. 1934. “Cultes indiens et indigènes au Champa.” Bulletin de l’Ecole Française d’Extrême Orient 33 (1): 367–410. Ricoeur, Paul. 1984, 1985, 1988. Time and Narrative. 3 vols. Chicago: University of Chicago Press. First French publication, 1983, 1984, and 1985. Zucker, Eve Monique. 2008. “In the Absence of Elders: Chaos and Moral Order in the Aftermath of the Khmer Rouge.” In People of Virtue: Reconfiguring Religion, Power and Moral Order in Cambodia Today, edited by Alexandra Kent and David Chandler, 195–212. Copenhagen: Nordic Institute of Asian Studies Press.

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42 CORPUS VILE Death and Expendable Youth in Urban Congo

Filip De Boeck corpus vile (plural: corpora vilia) [from Latin corpus (“body”) vile (“worthless”)]: A person, animal or thing treated as expendable, to therefore use as an experimental subject regardless of whatever loss or damage it may suffer as a result. Figuratively: the subject of an experiment.

D E AT H A S A D E FA M I L I A R I Z I N G T E C H N I Q U E

Focusing on the ethnographic site of the cemetery, this chapter is situated at the nexus between (corporeal) intimacy, violence, and the production of social and political criticisms and moral claims by urban youth in Kinshasa, the capital of the Democratic Republic of Congo (DRC). More specifically, I will focus on the ways in which, in this urban site, the vitality of the youthful body and the “life of the corpse,” to use a phrase coined by the Mexican artist Teresa Margolles (cf. Kittelmann and Gorner 2004), are made to collude and to collide in today’s urban setting. Youth and death are two categories that normally exclude each other but that have become intimately connected in Kinshasa since the early 1990s (Vangu Ngimbi 1997). It is this connection that provokes us to think about the seemingly counterintuitive ways in which young people confronted with powerful societal problems articulate their sociality and their “law” out of the very source of their own desperation and death. By eliding life and death, by placing the city as a whole in the presence of death, Kinois youngsters remove the distance we would normally place between ourselves and the dead. And by forcefully taking over funerals and turning their own dead bodies into a powerful medium to refocalize the refracting histories and experiences of death within the urban site, by using death as a “technique” of “defamiliarization” (or ostranenie, a notion I borrow from Viktor Shklovsky’s seminal text “Art as Technique” [2004])—that is, by converting death into a presence of estrangement that constantly decenters the taken-for-granted nature of local experiences of the urban—Kinshasa’s young inhabitants successfully manage to squarely position themselves in the public eye,

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thereby establishing a highly conspicuous presence in a city that denies them a place otherwise. After an ethnographic description of some of the complex ways in which death continues to be dealt with in Kinshasa’s rural hinterlands, followed by a summary description of the material infrastructure of Kinshasa’s cemeteries and the mourning rituals and funeral events unfolding around them, the remainder of this chapter offers an attempt at understanding exactly what the use of death as a technique of defamiliarization entails.

> : D E AT H A N D T H E C I T Y

Ah, Maman Chantal! No kidding, if someone tells you that you are ugly, thank him, and tell him: “Why do you call me ugly? You want to know what ugly means? Have you ever been to a morgue? And did you see how corpses are put on top of each other there, like parcels? And seeing all these dead bodies, didn’t your heart cringe and didn’t you want to run away? Some have their eyes wide open, some corpses are already rotting, their mouths hang open, aah, really, the human body is ugly! Part of a conversation between two women, recorded during a matanga nocturnal wake, Camp Luka, Kinshasa, March 2008

The vivid description of the situation in Kinshasa’s morgues, rendered in a casual conversation during a nocturnal mourning ritual, stands in sharp contrast to the cautious and ritualized treatment of death as it existed, and to some extent continues to exist, in Kinshasa’s rural hinterlands, as the Luunda example above attests (see also Devisch and de Mahieu 1979 for a detailed description of funerary rituals among the Yaka, who are the Luunda’s northern neighbors in Bandundu Province, and who have constituted an important portion of Kinshasa’s population since the early days of its creation [Roosens 1971]). Deaths, mourning rituals, and funerals still mobilize a lot of social capital in an urban context such as Kinshasa’s, but, as elsewhere in Congo (Noret and Petit 2011), the emotional contents of death, its ritual handling, and the affective dimensions surrounding its occurrence have radically changed. These changes are due to several factors. First, the specific nature of the city’s infrastructure imposes important transformations in the way urban residents are forced to cope with death. Few morgues in Kinshasa function well enough to hold corpses in good condition for more than a couple of days, and the overall failing nature of public utilities in the city does not help to improve this situation. One can hardly underestimate the importance of the history of the city’s built form and its material, physical infrastructure if one wants to understand the ways in which urban residents unfold, generate, and design urban space in general, or, to bring it back to the topic of this chapter, the manner in which they deal with their dead more specifically. For many decades, especially after 1960, Kinshasa was—and to a considerable extent still is—a city where formal urban planning and architecture remained and remains almost nonexistent. This was not for lack of master plans. In fact, such plans abounded, but for various reasons they were never, or only very partially, implemented after independence (Beeckmans 2013). Therefore, a significant part of the city’s material infrastructure, and certainly public utilities such as water supply, electricity, road infrastructure, and public buildings (administration, schools, etc.), still rely on what was put in place during the colonial era. By now, however, this colonial infrastructure is mainly present through its degradation, and its “absent presence”: as a splintering conglomerate of decaying fragments—rotting figments and distant echoes of what once was. Often of a tragicomic nature, and usually demanding a lot of energy and a high degree of inventiveness to keep

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up appearances and to keep it going, this infrastructure, more often than not, is characterized by constant breakdown, by lack, by paucity, by failure, and by disrepair and recycling. As such, urban residents are constantly confronted with infrastructural shortcomings and impossibilities. These become very visible in the city’s graveyards. During the colonial era, which formally lasted from 1908 to 1960, large plots of land within the city were set aside by the Belgian colonial administration for the construction of cemeteries. These graveyards, modeled upon the typical form of nineteenth-century European cemeteries, were thus the immediate result of a colonial intervention, bringing about the invention of a new type of space within the novel urban context that emerged in Congo in the first half of the twentieth century. In the urban planning for Léopoldville, most of these cemeteries were situated in empty zones and no-man’s-lands that purposely formed effective buffers between the city’s expatriate “white” colonial heart, La Ville, and La Cité, its “indigenous” periphery, to employ the colonial vocabulary. This African periphery consisted of a number of large municipalities, most of which emerged as huge reservoirs of black labor to service the residential and commercial urban center. Because formal urban planning ground to an almost complete standstill after independence, and because of the mounting pressures caused by the demographic explosion that Kinshasa underwent in the second half of the twentieth century, many of the colonial cemeteries were rapidly engulfed by living areas after 1960. These often took the ad hoc and makeshift form of slums and camps, and this infrastructural history has to a large extent continued to define the material outlook, the sensory feel, and the generally poor quality of life in the city as it has emerged since 1960. This haphazard city is often referred to by Kinois (Kinshasa’s inhabitants) as a cité cimetière, a cemetery city or necropolis where the material infrastructure has become totally “cadaverous” (cadavéré),16 and in which life is constantly rhythmed by the inescapable presence of death. Many of these older colonial cemeteries within the city have since been abandoned by the urban authorities, mostly because they had by far exceeded their capacity to take in more corpses. Some of the older city cemeteries, such as Kintambo and Kasavubu, were already closed in the late 1980s. Other centrally located cemeteries such as Gombe, in the very center of the city, and more peripheral cemeteries such as Kinkole and Kinsuka were officially closed by André Kimbuta, the city’s current governor, in 2010. Some of the colonial cemeteries such as Kasavubu were converted into gardens and fields, and some were just left as they were, such as the large cemetery of Kintambo. New cemeteries were—and continue to be—constructed in the eastern and western peripheries of the city. Nécropole entre terre et ciel (Necropolis between Heaven and Earth) would have been an appropriate nickname for Kinshasa, but it is instead the official name of the city’s most recent (2010) cemetery, a public–private joint venture on the city’s easternmost outskirts in Nsele. Let us have a closer look at the cemetery of Kintambo.17 Once the main cemetery of Léopoldville, and in use since the early 1950s, today it is certainly the city’s most emblematic graveyard, literally overflowing with corpses, and epitomizing to the full the decay of the infrastructure of most of Kinshasa’s public utilities. Already in the late 1980s the

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urban authorities closed this cemetery down, but today, after two more official closures, the inhabitants of the neighboring quartiers—the populated slum areas of Camp Luka, Quartier Congo, and the slightly more upscale Jamaïk— still continue to bury their dead there. Every day, more corpses arrive in this cemetery, which has long been abandoned by the city’s authorities. A lot of burials are still taking place at the cemetery of Kintambo. At the Division Urbaine of Kinshasa, the city’s administrative unit responsible for all of Kinshasa’s cemeteries, no official statistics are kept about the number of burials performed every year throughout the city. However, between 2002 and 2005, the head of the Service d’Inhumation kept track of the number of reported burials,18 and arrived at a yearly average of 21,968 deaths during this period. The cemetery of Tsuenge seemed to absorb more bodies than any other cemetery, but Kintambo still ranked second, with 25.17% of the city’s burials in 2002, 24.31% in 2003, and 21.47% in 2004.19 That means that 23.65% of all of Kinshasa’s deceased for those years were buried in a cemetery that no longer exists officially. No longer taken care of, the cemetery has become, in the words of the Kinois, “a forest where snakes lay their eggs.” The cemetery’s original ground plan, with its asphalted streets and alleys, has totally disappeared. It has made way for a lush vegetation that has totally overgrown this thanatopolis, burying the dead for a second time. Here indeed one dies twice: tombs and coffins are looted, or washed away by the rainy season’s torrential storms, causing the dead bodies to disappear as rapidly as they were buried. Often, also, graves are recycled and different corpses are buried on top of each other for lack of space, or bodies are exhumed so that the coffin may be recuperated and resold. Other tombs are destroyed to make way for illegal housing constructions, for in this urban jungle the living and the dead are engaged in a sometimes fierce competition over land. Like many other cemeteries in the city, such as Kinsuka and Kisenso, Kintambo is constantly menaced by an uncontrolled and rapid urban sprawl that makes it difficult to maintain the dividing line between the living and the dead. As Kinois say: “We [the living and the dead] are all the same” (biso nionso bato moko). In Kintambo and other cemeteries in Kinshasa, the living and the dead indeed live in close proximity; their lives seem intimately related. Kids play football between eroded graves, or burn the cemetery’s vegetation during the dry season in order to hunt for bush rats, which may be sold for consumption; tombstones along the road serve as shop windows for secondhand clothes, bottles of palm wine, or plastic vessels made in China, which vendors with loud voices try to sell to passersby; women harvest the corn and groundnuts that grow from the bellies of the dead; mortuary houses inside the cemetery are used as shelters by street children (whom Kinois refer to as société morte, “dead society”), while young musicians offer their services as drummers and singers during funerals. Others attempt to get hired as laborers by the gravediggers’ associations that occupy and control the cemetery on an informal basis and turn the tombstones along the main road into their personal office space. In fact, through a spontaneous commoditization of death, the cemetery has become a market, a place to satisfy one’s “thirst for money” (lokoso).20

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figure 42.1 Soccer field. Kintambo cemetery, Kinshasa, May 2007. (Reprinted with kind permission from R. Lambeets.)

M O M E N T S O F M O U R N I N G : M ATA N G A A N D T H E M O R A L I T Y OF DISORDER

“Mokolo nakokufa” (The day I die) is a classic title from the great songbook of Congolese rumba, a musical genre that started to emerge together with a new urban infrastructure and the novel experience of an urban lifeworld under Belgian colonial rule. Composed in the late 1960s by Seigneur Tabu Ley Rochereau, and offering a timeless philosophical reflection on human mortality, this song has since become an inextricable part of the collective musical memory of Kinshasa. One of the elements that made this composition so successful is the fact that Tabu Ley conjures up a kaleidoscopic view of an urban collectivity, pieced together from the fragmented perspectives of different individual voices— all imagining, in the singular form of the first person, the day of their own death: the singer himself, the pauper, the rich man, the drunkard, the prostitute . . . It is no coincidence that in this famous song, mortality becomes the prism through which different splintering perspectives and identities are turned into a collective experience. Then as now, death is the spectral lens through which the city is imagined as a shared social body. Even today, in a megalopolis such as Kinshasa where kinship ties,

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clan and lineage identities, and other forms of social belonging referencing a shared preurban past have lost a lot of their cohesive power, the dead body is an important social infrastructure, while the matanga, the mourning rituals preceding the actual burial, have remained important social events, engendering communal moments of encounter and creating wide-ranging social networks that are regenerated from one matanga to the next. As Deborah Durham and Frederick Klaits (2002, 778) remark with regard to funerals in Botswana, “[P]eople find themselves connected in their very physical well-being through emotional states and sentimental connections recognized and forged in public space.” What produces this connectedness between all those present is the sense of shared, collective Trauerarbeit, shaping up around an intimate, often corporeal and tactile, and always emotionally charged relationship with the body of the deceased. During nocturnal wakes that last all night and well into the next day, culminating in the journey toward the cemetery and the actual burial of the corpse, these moments of mourning bring together relatives, neighbors, and friends. Once the corpse has been retrieved from the morgue and is lying in repose for public viewing in the family compound or (if the compound does not offer enough room, as is often the case) in the street or in any other available public space,21 all these people gather around the dead body to weep, sing, address the deceased, touch and embrace the body, dance around it, and take care of it until the actual moment of burial the next day. This collective labor of loss is, therefore, also a ludic happening. Matanga invariably offer occasions for laughter, amusement, flirting, and excitement; they hold out the promise of new encounters, or the joy of meeting up with old friends and acquaintances. But at the same time, matanga remain very weighty occasions in which existing hierarchies and power relations within and between families, lineages, and clans are reaffirmed or contested. Usually, the maternal uncles of the deceased are the ones in charge of the funeral. They decide upon the time and place of burial, and they are also the ones to raise the necessary money, hire chairs, contract an orchestra and/or choir, contact the authorities, take care of the formalities for burial, meet the cemetery authorities, supervise the unfolding of the mourning period until the burial, assemble the deceased’s family (on the mother’s and father’s sides, and the in-laws), conduct the palavers surrounding heritage and funeral contributions, and, most important, establish the cause of death—certainly in cases where witchcraft is suspected to be at the origin of a person’s death. Death thus remains an important group event, and a focal point to assemble people and to reimagine and replenish the social weave in the urban context. Matanga continue, therefore, to reflect the rhythm of social life in the city. They function as important motors for the reproduction and renewal of social networks, offering a nocturnal spacetime in which the social landscapes unfolding between people during the day are constructed. Yet in recent years, matanga, as ritualized forms of a shared, collective labor of loss, also seem to have lost a lot of their socially constructive force. Partly due to the corrosive impact of decennia of political mismanagement and state neglect, which have

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heavily affected the quality of social life in general, the transformations surrounding death also epitomize increasingly divisive new societal tensions. Among other things, these are caused by the seemingly unstoppable growth of the city, as well as by the increasing generational imbalance that accompanies this growth. In 1945, when Kinshasa still went by the name of Léopoldville, the city housed forty thousand inhabitants. In 1960, the urban population had already grown to four hundred thousand, and since then Kinshasa has become home to a population of approximately ten million people. Although the female fertility rate in Kinshasa has dropped dramatically since the 1970s (Shapiro and Tambashe 2003), Kinshasa’s yearly growth rate, currently exceeding 5%, still makes it one of the largest and fastest-growing urban centers on the continent. A closer analysis of the available (though shaky) demographic data for Congo reveals that 65% of the total Congolese population is under the age of twenty-five, and that this figure is probably higher for Kinshasa. And although the official life expectancy at birth for the total Congolese population has gone up from forty-seven years in 1960 to fifty-four years in 2010 (according to the statistics of the World Health Organization’s world health rankings), Congo has gone down in the world ranking from the 106th position in 1960 to the 163rd position in 2010. In the past few decades, urban centers such as Kinshasa have indeed experienced an excessive mortality rate. Due in part to the AIDS epidemic, the high death rate must also be blamed on the overall harsh conditions of life prevailing in the city. Death has thus become omnipresent in daily life, and, as elsewhere throughout the continent, it has started to restructure urban living in many fundamental ways—a fact that has not remained unnoticed by social scientists and historiographers. Although the classic topics of death and mourning have never ceased to be of importance to anthropology (see, for a recent example, Connerton 2011), the increasing production of death throughout the African continent has given rise to a recent revival of anthropological and historical studies concerning funerals and mourning rituals in various African, and mostly urban, contexts (see, e.g., De Boeck 1998, 2005, 2008a, 2009b; Dississa 2009; Grootaers 1998; Jewsiewicki and White 2005; Jindra and Noret 2011; Noret 2010; Noret and Petit 2011; Lamont 2009; Lee 2011; Vangu Ngimbi 1997; Vaughan and Lee 2008, 2012). That death, and the dead body itself, increasingly become important “means of reimagining the social” (Nuttall 2013, 418) is indicative of the hardships that continue to be part of the lives of many Congolese. Even more puzzling is the fact that, given the city’s demographics, young people are affected by death in significantly larger numbers than their elders.22 It would not have occurred to Tabu Ley to include in his song a young person’s voice, musing about the day of his or her own death. Today, however, the categories of “youth” and “death” have become inextricably linked. As a result, throughout Congo’s urban centers, but most strongly in Kinshasa, young people have made death one of the central elements through which they express themselves and stake out their place in the city. This phenomenon might be observed throughout the city, as well as in other Congolese towns, but it is especially the case in Camp Luka, the overpopulated slum area

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that borders on the cemetery of Kintambo and that grew out of an illegal squatting area in the 1970s. Among its inhabitants (who are mostly of Yaka origin—see above), Camp Luka is known as “the State” (Leta). Camp Luka’s youngsters, who call themselves the “children of the State” (Bana Etat) or “the children of disorder” (bana désordre), impose disorder, their “law,” the unruly rules of this strange and ragged state, onto the cemetery and indeed the rest of the city. They do so in effervescent ways, ludic and violent at once, during the mourning rituals (matanga) and funerals, and through the materiality and aesthetics of the body—both their own and the bodies of the dead. As stated above, the fathers and uncles of the deceased are normally the ones in charge of the funeral. In recent years, however, the city has witnessed a powerful reversal of the standard norms and rules that regulate the intergenerational dialogue in the spheres of kinship and public life. Increasingly, children and youngsters are taking over control of the mourning and burial rituals. This is especially true when a young person dies, and as I already indicated, premature deaths have become the rule rather than the exception. The demise of a young person is an emotive moment of crisis, triggering a lot of anger and fomenting strong rebellious sentiments among the deceased’s age mates. This anger is mostly directed at older generations. More specifically, the parents and elders of the deceased will be the first ones to be blamed for this death. In such a case, youngsters will invade the scene, single out fathers, maternal uncles, and other elders, and, typically making use of the available vocabularies of witchcraft that pervade the urban site, will accuse them of having “eaten” their young relative or friend (balei ye, babomi ye: they [the elders] “ate” him, they killed him). Usually, such witchcraft accusations tend to radically alter the course of the funeral itself. The matanga almost invariably “turns into disorder” (matanga ekomi désordre, pito-pale) to become an intergenerational battlefield. When that happens, the deceased’s friends, classmates, or just any young person living in the same neighborhood are likely to take over control of the matanga and of the funeral rituals. These groups of young people, sometimes in collaboration with local youth gangs—referred to as kuluna,23 as “strong people” (bato ya makassi), pomba, or yanke (from “Yankee”) (see also Geenen 2009; Gondola 2009; Pype 2007)—will start to throw stones at all who are present at the site of mourning. They might uproot the trees in the compound, or attack the deceased’s parental home, often destroying or burning it down in the process, while beating up, chasing away, and sometimes even lynching or burning to death the parents, uncles, aunts, and preachers who are gathered there to mourn the deceased. Sometimes, the family of the deceased tries to mobilize the police to regain control of the corpse during the funeral procedures, but often the police refuse to get involved. And when they do, their intervention often leads to a further deterioration of the situation. On several occasions in the recent past, youngsters were hit and even killed by police bullets, provoking yet another round of violent funerals. In any case, the general atmosphere quickly turns into a chaotic and often very violent mood that is further enhanced by the youngsters’ singing and dancing, as well as

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their lavish use of marijuana and locally brewed alcohol (lungwuila, chichampa, lotoko, or supu na tolo [“chest sauce”]). Invading the scene of mourning, they will single out certain elders. While singing, “Tango mosusu ndoki ye oyo ye oyo” (Maybe the witch is this one or that one), they proceed to confiscate the abandoned dead body. Sometimes they also block the street and erect a “frontier” (barrière), forcing passersby to make a monetary contribution. In case the latter refuse, they risk, at the very least, to be dirtied with a mixture of burned rubber and palm oil. The money thus extracted is often spent on the burial itself.24 Under these circumstances, the funeral itself almost inevitably turns into a highly chaotic event. Minibuses and cars are randomly confiscated in the street by youths. Sitting on the cars’ rooftops or hanging out of the windows while singing and shouting, or flashing their buttocks or breasts from the cars’ windows, they use these hijacked vehicles to drive to the cemetery at high speed. More often, the coffin with the corpse is paraded through the streets, carried by the deceased’s friends and surrounded by dancing boys and girls singing songs full of sexual license: “Lelo libola etuli, lelo libola ekei kopola” (Today the vagina no longer works, today the vagina will rot away). Other song lyrics include: “Awa ezali hotel. Oyei, osali, ya premier coup ezalaka direct!” (Here it [the cemetery] is a hotel. You come, you make love, and from the very first shot it is goal!) and “Mayi! Mayi! Mayi mibali, mayi mikongo, mayi! Soki nakangi yo nakocha yo etsubeli, etsubeli, etsubeli! Nakosiba yo!” (Water, men’s water, water from the backbone [sperm], water, water! When I catch you, I will put my penis inside you, the penis, the penis, I will fuck you!). Regularly, young boys and girls sit down on top of the coffin, putting it between their legs and making copulating movements as if they were having sex with the corpse. During these funeral processions toward the cemetery, the songs’ lyrics often also become outspokenly political, attacking in no uncertain terms the political leaders of the city and the country, or elders and other authority figures such as priests and preachers:25 “Toyei, toyei matanga, toboyi baconseillers, soki olingi koteya, teya bandimi na yo. Soki olingi koteya teya bana na yo. Soki olingi koteya teya na ndako na yo” (We go, we go to the mourning ritual. We refuse the councilors’ [the elders’] authority. If you want to preach, preach for your believers. If you want to preach, preach for your own children. If you want to preach, preach in your own house). Other songs voice the youths’ discontent with the state of the nation—“Bana na diplome bakei koteka mayi, bana na diplome bakei koteka boudin. Pays riche lokumu ezali wapi?” (Children with a diploma sell water, children with a diploma sell sausages. A rich country, but where is dignity?)—or openly criticize its current leadership. Sometimes they even give voice to a nostalgia for the former Mobutist regime (“Mobutu tango okenda loso na loso” [Mobutu ever since you left, we only eat rice (we are hungry)]) or openly attack the country’s current political elites. Often, also, during these unruly funeral processions, the young carriers of the body perform a divinatory ritual on the corpse. By tapping with a stick on the left- and the

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figure 42.2 Copulating with the corpse. Camp Luka, Kinshasa, March 2007. (Reprinted with kind permission from R. Lambeets.)

right-foot corners of the coffin, they ask the dead person to direct them to those responsible for his or her death (namely, the maternal [left] or paternal [right] elders, respectively). In response, the coffin with the corpse will lead the carriers to the house of the person responsible for the “eating” of the dead person. Here, the girls accompanying the funeral procession play a very active role, because they are the ones who voice the suspicions of witchcraft, directly addressing the culprits while encouraging the dead person to reveal the truth about his or her death: Now that you have eaten X, watch out! [To the corpse:] Even if it is someone from the father’s side Even if it is someone from the mother’s side, Follow those that ate you Track them down Lead us to their hiding place So that we can kill them Track them down during the night Track them down during the day Find them, even if they hide in the water

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Open your eyes and your face Even if they take a bus, follow them Don’t let them escape Even if they hide in the fields, follow them Even if they hide in the forest, follow them Even if they are more than ten We know the witch, we know the village he comes from. Those who killed X are known!

It frequently happens that the coffin directs the crowd in this manner to the house of an elder, which often leads to the destruction of the house and to a public beating or mob killing of the one thus denounced as a witch by the corpse. When, after all this upheaval, the funeral procession finally arrives at the cemetery with the corpse, the young people who followed the coffin on its journey regularly destroy tombs and often also attack the cemetery’s grave diggers, or mere bystanders happening to be in the wrong place at the wrong time. Funerals have thus become much more than moments of political contestation for a rebellious urban youth. Funeral rites are used to address civic wrongs, but the violence and anger that are unleashed during these events spring from a place deep inside, far beyond the level of official state or church politics. The aggressive display of the disorder of affect (and the affect of disorder) touches on deeply moral issues, and is related to the much more intimate domains of young people’s own bodies and lives. Their actions pose fundamental questions with regard to the possibility of intersubjective relations; they address possible reconfigurations of what kinship might mean, and attempt to redraw the dividing lines between insider and stranger; or they question the very definition of the notions of ancestrality and sacrality, and the feasibility of continued intergenerational transmission of social knowledge. These are some of the issues that I will explore in the next section.

C O R P O R A V I L E A : E X P E N D A B L E YO U T H A N D T H E N OT I O N OF SACRIFICE

If, as Lévi-Strauss famously remarked in the concluding pages of Tristes Tropiques, cities are machines, “instruments intended to create inertia, at a rate and in a proportion infinitely higher than the amount of organization they involve” (Lévi-Strauss [1955] 1974, 413), the cemetery of Kintambo seems indeed to be the right place to redefine anthropology as entropology, “the discipline concerned with the study of the highest manifestations of this process of disintegration” (414). But is this what is really going on in Kinshasa’s burial grounds? It is easy to read a space such as the cemetery of Kintambo, with its infrastructural degradation and the breakdown of cultural norms and long-standing notions of social order that accompanies this material decay, as a general metaphor for the zombified state of a city and a country that, in the words of Kinois, “died” or “rotted

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figure 42.3 Still from the documentary film Cemetery State (2010). Photography by R. Lambeets.

a long time ago” (mboka ekufi, mboka ebebi), or that are being perceived as terminally ill and cadavéré. But are notions of entropy, chaos, disorder, or dissipation of energy adequate tools to understand the dynamics of a place such as the cemetery of Kintambo? Do they have sufficient explanatory power to fully capture the meanings embedded in the new mourning and funeral practices that have developed around it? It is indeed tempting, perhaps even too obvious, to understand Kinshasa’s postcolonial cemetery as a mere zone of social abandonment, to use Biehl’s term (2005), with specific Agambenesque connotations, in which the law is in force but no longer has substantive meaning (Agamben 2005). The cemetery of Kintambo and its surrounding slums indeed offer an almost camp-like infrastructure (as Camp Luka’s name already indicates in itself ) that exemplifies the state of exception that has become the rule in postcolonial Congo and beyond (cf. Norris 2000). This abandonment fully illustrates to what extent Kinois are turned into homines sacri, collectively reduced to the specific forms of raw bare life—that is, a politicized form of natural life, a life exposed and subjugated to death, placed outside both divine and profane law. Kinshasa’s young inhabitants strongly sense that they have become the corpora vilea of a (post-)colonial experiment called Congo, that they are the expendable subjects of a ruthless necropolitical form of governmentality (Mbembe 2003), of a thanatocracy that is controlled by previous generations who, reducing their own children to “animals,” have “sacrificed” them in the process. Indeed, the phrase “We live like animals” (Lingala: tokomi kovivre lokola banyama) may often be heard in Kinshasa’s streets. But although young people in Kinshasa often speak

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about themselves as a generation that has been “sacrificed” by its own elders, the sacrificial aspect sensu stricto is absent from the way the state produces death (and, as Agamben reminds us, under Roman law homo sacer could be killed with impunity, but his death could never constitute a sacrifice). Indeed, there is no sacrifice here, but only “eating,” a witchlike killing, devoid of any meaning or sense of sacrality. The act of killing an animal, for example, may be called sacrificial only if a form of identification between the sacrificer and the sacrificial object is made and then unmade during a ritual process (cf. Cartry 1987, 8). In the Congolese setting, however, this sense of identification is totally absent. Not only does the state constantly outlaw its own youth, excluding it from any real rights to the city and expelling (and often even physically eliminating) it from the public sphere in general, but the city’s older generations, the parents of these young people, have also completely “desolidarized” themselves from their own children. This act of desolidarization has radically transformed the nature, and the very possibility, of intergenerational transmission in Congo’s urban world. Kinshasa’s neo-Pentecostal and other churches of Christian fundamentalist signature have significantly contributed to this trend of parental delinking, or “de-parentalization” (Tonda 2008). Preaching a radical rupture with the autochthonous ancestral past, which is constantly demonized (Engelke 2010), these “churches of awakening” (églises de réveil) have been strongly contributing to an ongoing redefinition of long-standing Central African landscapes of lineage and kinship affiliation. They do so by propagating a move away from the extended family and its accompanying kin-based model of solidarity, by recentering the focus toward the more “Western” model of the nuclear family and its related forms of singularization and individual rather than collective subject formation, and by trading the logic of reciprocity and kin-based solidarity for a monetary and capitalist-oriented logic, with everything this entails (a new work ethos, new notions of accumulation and maximization of profit, new forms of self-realization and individualism). This explains why Pentecostal preachers in Kinshasa often state that “family is witchcraft”: given the neoliberal notions of selfhood that are promoted by these churches, those family members (nephews, nieces, and other dependents) who, within the gift-based logic of kinship solidarity, could always turn to maternal uncles for help are now not only being reformatted as “strangers” but also redefined as “witches” when they try to do so, because, for a true and authentic Christian, it is “by the sweat of your brow that you will eat your food until you return to the ground” (Genesis 3:19). Profound changes such as these processes of deparentalization have provoked dramatic shifts in the city’s social realm, as is attested by new forms of witchcraft accusations directed against “witch children” (bana bandoki), the collateral damage produced by these new definitions of relatedness. Since the early 1990s, and coinciding with the rise of Pentecostalism, children in Kinshasa and elsewhere in the country have increasingly been blamed by their parents and elders for all the mishaps, misfortunes, illnesses, and deaths that occur in their families. As an immediate consequence of these accusations and of the elders’ often authentic fear of being “eaten” by their own offspring, thousands

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of children have been excluded from their homes, to be secluded in (mostly Pentecostal) churches in order to be exorcised (see De Boeck 2008b, 2009a). As a result of such newly emerging processes of exclusion, children regularly end up in the street, and the more their numbers grow, the more these street kids—or bashege, as they are commonly known—are regarded as a real nuisance and a danger to the city. Today, they are being considered in the same way as the many kuluna street gangs that are increasingly terrorizing the city’s neighborhoods (and who have partly sprung from the ranks of this growing army of street “rats”). In public opinion, both categories (“street child” and “gang member”) have become merged (also because, in part, both are associated with the space of the cemetery, often the space in which they live or from where they operate). Moreover both categories are held responsible not only for the increasing sense of insecurity in the city, but also for the profound banalization and desacralization of death within the urban context. Most adults in Kinshasa are deeply shocked by the fact that children and young adolescents “no longer respect the dead.” They are utterly upset by the fact that children and young people eat and sleep on tombs in the city’s cemeteries, that they turn funerals into a bêtise that disregards former ancestral beliefs and moral frames of reference and that mocks long-standing gerontocratic orders and gendered structures of authority. They are also appalled by the fact that their “children” have converted corpses into a mere “toy” (eloko ya jeu), or that coffins have become like a football to be kicked around during the soccer “match” that the funeral has become. This moral indignation is also the general sentiment that is conveyed by Kinshasa’s numerous TV stations (and in recent years, Kinshasa has indeed witnessed the birth of an unprecedented number of—mostly privately owned—TV stations) (Frère 2007). Lingala Facile, for example, is the name of a widely watched TV program. Conceived by the Congolese star journalist Zacharie Bababaswe, this program comes in the form of a “proximity account” (cf. Pype 2011). The visual pendant of radio trottoir (“sidewalk radio”; i.e., rumors or gossip), it offers a platform for spectators to send in their own witness accounts and images, usually filmed with a mobile phone, of what is going on in their streets and neighborhoods. In this way, the whole of Kinshasa is frequently subjected to amateur footage showing, among other things, the material decay of the city’s graveyards. Similarly, Kinois report about ill-functioning morgues and their rotting corpses, document and comment upon the life of children in the cemetery, or display and condemn the chaotic and violent effervescence that frequently accompanies the burial of a young person. The widespread use of mobile phones has greatly contributed to a further intensification of the mediatization of death’s penetration of the public sphere.26 Again, as in Tabu Ley’s song, death, in its enhanced visibility, reveals itself to be a central focal point of urban life in which different converging views come together. A divisive yet also uniting presence, it engenders simultaneous multiplicities while also constituting the unique lens through which the city’s obverse and reverse points of view come together. In this way, death seems to offer one of the few vantage points from which the possibility of initiating an intergenerational dialogue might be envisaged, even if that

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dialogue often turns into a dialogue of the deaf. In the eyes of their (grand)parents’ generation, most people act as if death signifies the end; as if there is nothing beyond death, as if one just disappears. In sharp contrast with long-standing autochthonous beliefs in ancestrality (see also Kopytoff 1971), elders find that, in the minds of their children, the production of ancestors has come to a standstill. And yet the latter constantly exclaim: “How can we still respect the elders? They are the ones who should uphold tradition, who tell us about the important place of the ancestors, but when you see how they cope with the dead, who will become the ancestors, when you observe how corpses are put in the street, how they are buried hastily, how they are left to rot in morgues, how can we continue to believe that these corpses will turn into ancestors one day? Our elders have turned the process of dying into a trivial matter, and they have started to treat the dead with disrespect. So why should we still respect the elders?” In this way, funerals have become a means for political contestation against a generation of postindependence politicians who have squandered the future of the following generations while refusing to make room for them. But in a much broader sense, death has also become an occasion for this urban youth to criticize the role of parents and elders who have, in their eyes, démissionné, who have given up, who no longer seem to be able to fulfill their promises, whose moral authority has vanished, and who, while “eating” their children, accuse the latter of “eating” them. In the light of this failure of gerontocracy, young Kinois claim that “corpses have become the responsibility of the young people of the neighborhood” (bibembe ekoma ya bana quartier). It is out of necessity, therefore, that the young, in their own words, have become “the directors” (bazali kodiriger). They take over the control of the dead because elders have abused their power and authority, have squandered their wisdom, and therefore “have become little children” (bakomi bana mike). Young Kinois have thus designed a new architecture of urban survival for which death, and the very materiality and aesthetics of the dead body, by seeping so visibly and violently into the fabric of life, now serves as an inspirational force, a structural support, a framing device for negotiating social relationships and constructing identities. In a world where mourning has reconfigured meaning, where cemeteries have become dwellings for the living, and where coffins are likened to the footballs that boys toss around, the only way to live is to reframe death into something else. For young Kinois who deal with dead bodies on a routine basis, dying is no longer a departure from life; instead, it has become that which gives life its significance, density, and directionality. Life in fact cannot be lived, or spoken, or even imagined outside of the space of death. Youth’s instrumentalization of death as the single surface of a prismatic form has thus turned corpses into points of a strategic retroversion or retroflexion, a curving or bending back onto itself of the elders’ discourses, and of the city’s own fascination and disgust. For this is what these urban young do: by means of their funeral raids, they offer a mirror in which the city’s moral indignation is turned against itself, thereby forcing the city to behold itself, and reflect upon its own future.

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Paradoxically, though, this opening up of alternative futures goes hand in hand with the reintroduction of preurban ritual dynamics, in an “enactment of moral sentiment” (Livingston 2008, 293). As my long ethnography of a Luunda mourning ritual illustrated, rather than producing a breach with an ancestral past or with the precolonial ritual vocabularies that are so typical of this Central African region, the lewd songs and insults, urban youth’s exposure of body parts—the whole play with the body’s surface and its politics of undress (cf. Masquelier 2005), the “copulating” with the “corpse” and so on— are playful but also deadly serious replays of long-standing ritual syntaxes. In this sense, also, one should understand the way in which youngsters ritually ridicule and curse death and disease, by performing dances in front of the corpse of their dead friend, by imitating physically impaired people, thereby keeping death, disease, and misfortune itself at bay.27 In various ways, then, Kinois youngsters shape a future for older ritual forms of which they often do not even have firsthand knowledge, but which they nonetheless employ anew in the urban context, in a creative act of local actualization—a specific form of reprendre (Mudimbe 1999). Echoing AbdouMaliq Simone’s notions of “people as infrastructure” and “social infrastructure” (2004; 2012), the youthful body thus imposes its scale, its mobility, and its temporal and relational logic onto the city. Within the urban context of Kinshasa, this body’s infrastructural importance becomes obvious, for example, through the ways in which the private and intimate corporeal realms often reveal themselves to be the public stage par excellence. Think, for example, of the importance of the playful body, of bodily appearance, and of “stage presence”—as epitomized by the famous Congolese sapeurs (Gondola 1999), who are so apt at turning the urban nightmare into oneiric lines of flight (and by using the graveyard’s tombstones as a catwalk, as they often do, their contest of costumes often literally provokes a collision between the lethal and the ludic).28 Against the order of the state and the church, and their promotion of what essentially remains a very colonialist modernity, Kinshasa’s urban youth thus introduce their own moral frameworks. In using corpses as alternative political platforms to speak out, they introduce death as a powerful tool for self-making and for exercising their critique against older forms of authority. In this they seem to exemplify and confirm the observation made by Bogumil Jewsiewicki and Bob White (2005, 1) that, “[a]s death seems increasingly present in the lives of people in many parts of Africa, emerging forms of social mourning echo the need for new political futures, and mourning shows itself as an important terrain for the social production of meaning.” So far, this does not seem to crystallize, however, into a more formally organized political youth movement. It does not immediately seem to spark off a Central African Spring (and remember that it was a corpse—the burned body of Mohamed Bouazizi, a young Tunisian street vendor—that ignited the Arab Spring in 2010). Kinois youth’s criticism transcends the mere political level. Theirs is essentially a moral criticism of the world they live in. The outside, the urban public sphere, is criticized, reshaped by positing it against its opposite: the intimate corporeal space of inner self and intersubjective relations. Through a discourse and

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through songs that refer to lovemaking, sexuality, and play, and by means of a powerful and transgressive act of symbolic copulation between two bodies—that is, the strong and youthful body and the corpse, with all of its rotting, disintegrating, dissolving, smelly immediacy—youngsters shout this basic question to Kinois society as a whole: What does it mean to be human in the light of the constant threat of sudden disappearance and annihilation, in a context of systematic abandon and generalized infrastructural decay and material as well as spiritual insecurity? Against the omnipresence of death, and the constant threat of being annihilated and forgotten, the corporeal dimension of juvenile vocabularies of self-realization powerfully posits the city in the immediate time frame of the moment, the now, to celebrate its vitality and life and to offer an alternative to this degradation. This urban life, saturated with deadness that numbs everything and everyone, stands paradoxically against what is shown as the generative dimension of death—that is, the power that death has not simply to mortify life but in fact to enliven it. At the same time, the strange cartel between youth and death forces the city to stare into the face of its own death, and thereby into the darkest corners of its own modalities of existence. Juvenile bodies, whether dead or alive, here appear as lucid, ludic, but also subversive sites and frontiers of reterritorialization, not only of official cultural and political programs, but also of the much deeper and darker sides of what constitutes humanity in this urban setting. They struggle to redefine the vie nue, with all of the horror and disgust that comes with it, and to reanimate this bare life with new forms of profane and divine law, in an attempt at injecting elements of sacrality in the banality of dying, and at exploring the possibility of turning their own bodies into properly sacrificial bodies. That is also the new meaning of the graveyard. It provides urban youth with a heterotopic space to express the crisis, and to find forms to both embody and overcome the disintegration of their state, their city, their society, and its moral values.

CONCLUSION

In this chapter, my focus of attention has been not so much on the processes of zombification that strongly pervade the cité cimetière, the cemetery city, that Kinshasa as well as the “thanatocracy” called Congo have become. Rather, I have focused on the often perplexing ways in which young urban residents, through their cohabitation with death and the generation of new forms of mourning and coping with dispersal and loss, endeavor to reframe the harsh conditions of urban living in Kinshasa into something else. Death makes youth visible in a city that otherwise condemns them to a peripheral and marginal existence. Death is the stone that the young throw into Kinshasa’s pool, giving them an agency, and a force to disturb, to defamiliarize, and to decenter. Through an ethnographic description of their— sometimes violent—involvement in matters pertaining to death, I analyzed specific local attempts made by Kinshasa’s youth to turn the aporia of a naked life-form into more euphoric solutions. In the process, I argued, urban youngsters reconceptualize the camp, the very territory of death itself, in terms of a more heterotopic space where death may be reconceived

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as sacrifice. This effort enables Kinois youth to contest and rethink the time of the state and the postcolonial political order, and in so doing to express their longing for new political futures. First, funerals offer the possibility to reject current official political and religious order (all the more surprising given the thorough grasp of the millennial churches on all other aspects of public life in Congo today). It also offers them an even more powerful opportunity to redefine Congo’s ongoing economic and sociopolitical crisis in terms of a primarily moral critique of the specific necropolitics that underpins the postcolonial state of exception. By replacing the rule of the state, the church, the ancestor, and the elder with their own rule, which is characterized by “disorder,” young Kinois thus offer a powerful attempt at reshaping the moral (and religious) cartography of the urban public sphere.

N OT E S

1. This cycle of songs is normally part of the elaborate initiation rituals that take place when a member of the mwiingoony funerary association dies (see De Boeck 1991a). 2. This widow, a relative of the mufidi, should not have participated at another mourning night since her own husband’s death. 3. In former times, the mourning period could take up to four months or even a year. Today, this period has been much shortened. 4. De Boeck 1991b; see also Wastiau 2000 on mahaamb spiritual entities among the Luunda-related Luvale of the Upper Zambezi, and Turner (e.g., 1968) on similar “shades” among the Ndembu. 5. Nseew means “arrow,” and is also the word used for a gift made by the wife takers to the wife givers in order to open marriage negotiations. In the mourning context, the gift signifies the fact that the widow is divorcing her deceased husband’s family by ritually marrying into the healer’s clan. 6. This mixture consisted of bark scrapings of the following trees: mupach (Dacryodis edulis), muund (not identified), mujiw (not identified), and muleeng (Uapaca guineensis, U. nitida). These scrapings are pounded on a large piece of bark from the nsuumb tree, and further mixed with leaves from saansas, mbul a mulwalw, and djaangudjaangu plants (all unidentified). The resulting powder preparation is mixed with hot and cold water and will be used to ritually “wash” the widow. 7. The same name is given to a subsequent nocturnal wake, some two years after the actual burial, when the deceased’s own kin group (and thus without the widow and her relatives) will spend another night together, singing munem songs in memory of the deceased. The phrase “to disperse the charcoal” is synonymous with “to dethrone a chief.” 8. Syzygium guineense, from the family Myrtaceae. This tree plays a prominent role in hunting rituals. Its wood is used to make rifle butts. 9. In this specific case it was the sister’s son because a divinatory oracle had revealed he was partly responsible for triggering the anger of the haamb shade that had caused the husbands’ deaths. 10. The three “gates” again referred to the three dead husbands. By “breaking” the three gates with her right foot, she assures that her future husband will live.

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11. For a more in-depth analysis of the different meanings of the kapwiip (Swartzia madagascariensis, family Leguminosae), see De Boeck 1994. 12. The mukos tree (Erythrophleum africanum, or African blackwood, in the family Caesalpinacea). Its gum is used for purification, as the tree’s name indicates (-kos: “to cleanse, to wash away”). 13. At other performances of this ritual, I witnessed how the person undergoing the cleansing ritual was made to “copulate” with the earthen figure as well. 14. Sometimes, the kitchen utensils and pots used to prepare food for the deceased are left on top of the haamb figurine as well. Usually, they are deposited on top of the deceased’s grave, with the cooking pots turned upside down to “block” and prevent the dead person from returning. Often, also, some personal belongings of the dead person are put on top of the grave. 15. This time the healer used the bark of the musehe (Vangueriopsis lanciflora, a species of flowering shrub in the family Rubiaceae), also referred to as the “little one of kapwiip” (see note 11), to purify her from the muf spirit and the shadow of her deceased husbands, thereby “whitening” her (i.e., returning her to life). As in many Luunda rituals, the whole ritual thus unfolded as a progressive movement toward white, for this is the color of life, while red, in all Luunda-related cultures (cf. Turner 1967), is a much more ambiguous color that may connote life-giving forces (as with the blood of giving birth) but also death (menstrual blood, the blood of warfare, etc.). 16. The word cadavéré became a standard Kinois expression thanks to the 1984 hit “Ancien combattant,” by Zao, a musician from Brazzaville. 17. The cemetery of Kintambo is also the setting of Cemetery State, a documentary film that I directed (De Boeck 2010). 18. Not only there are numerous burial sites in and around the city of Kinshasa that are not officially known to the city’s authorities, but many deaths remain unreported because a significant portion of Kinshasa’s residents have never been registered in the city’s civil registry. 19. I received figures only for the first nine months of 2005, and none at all for later years. 20. A loosely structured association of twelve groups or “stables” (écuries) of self-appointed grave diggers oversees the cemetery of Kintambo. This association is called Shamukwale, the name of a village near the Angolan border. At this location people enter into Angola in order to engage in clandestine artisanal diamond mining. Grave digging is here compared, not without irony, to diamond digging. The Shamukwale association consists of a number of separate smaller groups, such as the Ecurie Bana Cimetière, Ecurie Etat-Major or Camp Kawele, Ecurie Camp PM (Military Police), Ecurie Camp Police, and so forth. Until 2010, the person recognized by most as the head of the Shamukwale association was the older brother of one of the cemetery’s administrative officials, who operate under the city governor’s authority. These officials, who still have a makeshift “office” on the cemetery grounds, are supposed to register the dead and collect certain taxes, even though officially the cemetery no longer exists. The members of the informal grave-digger groups are all young boys and men from the surrounding neighborhoods. Other youngsters who offer informal services in and around the cemetery are often also organized in similar écurie structures. These various groups at the cemetery of Kintambo offer specific services (digging graves, fabricating crosses, maintaining the tombs, etc.). Some of these youngsters also offer their services for clandestine burials. Very often, people who cannot afford to finance a burial are forced to bury their dead in a secret and nonofficial way. This happens more frequently when the deceased is a young child. Along

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the dusty road that cuts through the cemetery and forms the access to the neighborhood of Camp Luka, a small group of male adolescents, members of the Ecurie Tshico, wait to be contacted by parents who want to bury their child without officially registering the burial with the authorities. In such a case the burial is carried out at night. Other groups of young people await nightfall to dig up and steal the coffins of those who were buried during the day. These coffins are subsequently resold (cf. De Boeck and Plissart 2004, 136). Finally, some youngsters await the night to pillage the graves in the hope of laying their hands on clothes and jewelry. 21. The physical presence of dead bodies in the street has indeed profoundly reconfigured the access and use of public space in the urban setting. Some decades ago, in Kinshasa, placing the body of a deceased person in the middle of the street would have been unthinkable. In the 1960s and ‘70s mourning rituals took place inside the compounds, while children and youngsters were barred from any contact with death itself. If a funeral procession passed through the street, mothers would call their children indoors: children were not supposed to come into contact with death, since they represent the beginning of life and should not be contaminated by its end. Today, however, the body of the deceased is often placed upon a bier in the middle of the street, under a funeral chapel, around which people gather to mourn the deceased and hold nocturnal wakes accessible to all. To mark the presence of a corpse, streets are blocked and palm leaves are placed at their entrance. As such, the dead, also because they have become so numerous, have quite literally taken possession of the urban public space and constantly redraw the cartography of one’s neighborhood, redefining the meaning and use of the city’s public space in the process. 22. A recent radio broadcast from Radio Okapi, the UN radio station in the DRC, revealed, rather unsurprisingly, that child mortality is on the rise again in many parts of Kinshasa’s vast periphery (Radio Okapi, May 4, 2013), while in the 2013 annual State of the World’s Mothers (SOTWM) report “Surviving the First Day,” issued by the international NGO Save the Children, Congo occupies the world’s last position when it comes to the number of newborn deaths (Huffington Post, May 7, 2013). 23. The word kuluna refers not only to street gangs but also to the violent appropriation of the matanga itself (interpreted by many older Kinois as an unlawful privatization of the matanga as public event). The word kuluna is derived from the Lingala verb kolona (“to plant, to sow, to cultivate”), but it is also a derivative of the French coloniser. Thirdly, it refers to the military notion of colonne. In a city that does not otherwise give a full right of access to the urban public sphere, the young thus “militarily” occupy, appropriate, colonize and reterritorialize the cemetery, a pars pro toto for the city and the nation as a whole. 24. Clearly, at that point the deceased’s family members no longer control the funeral, and often do not take the risk of showing up at the funeral itself. Frequently, it is only after completion of the burial that the responsibility for the dead person is handed over again to his or her family, after the latter has paid a fine to the youth that performed the burial. Often, this payment consists of the muziku, the amount of money raised by the matanga’s participants to finance the burial. 25. Surprisingly, given the Catholic and Protestant imprint imposed by colonialism onto the Congolese life-world, and also given the more recent strong impact of new forms of Christian fundamentalism, death is one of the fields that increasingly seems to fall outside of their hegemonic control. In recent years, not only has Kinshasa witnessed attacks against elders

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during funerals, but increasingly kuluna street gangs have also started to target churches and priests. In February 2012, for example, several Catholic churches throughout the capital were attacked by street gangs, and most recently (14 May 2013), the church of Saint Augustin in the municipality of Lemba became the target of another kuluna attack. Some of these attacks are clearly ordered and manipulated by political factions in the city, as was the case in the June 2006 ransacking of the church of Soni Kafuta, one of Kinshasa’s most prominent Pentecostal preachers, known for his pro-Kabila views. Other attacks seem to originate more spontaneously. 26. YouTube, for example, contains numerous uncensored postings with raw footage showing mob killings during funerals, in all of their gruesome details. 27. Other ways in which regional ritual traditions are creatively recycled, for example, is through the performance of dances such as musangu, which is usually performed by Lunda and Yaka elders on important political occasions such as a title holder’s enthronement. In the urban context this dance is enacted by the young friends of the deceased to salute and honor him. And finally, the reuse of older divinatory practices (see above) constructs another bridge with preurban ritual vocabularies and practices that continue to exert a strong influence on daily life in the urban setting. 28. As illustrated by the photographic work of Congolese photographer Yves Sambu (see Sambu 2009).

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———. 2008b. “On Being Shege in Kinshasa: Children, the Occult and the Street.” In A Reader in the Anthropology of Religion, 2nd ed., edited by M. Lambek. Oxford: Blackwell. ———. 2009a. “At Risk, as Risk: Abandonment and Care in a World of Spiritual Insecurity.” In The Devil’s Children: From Spirit Possession to Witchcraft; New Allegations that Affect Children, edited by J. La Fontaine. Farnham, Surrey, UK: Ashgate. ———. 2009b. “Death Matters: Intimacy, Violence and the Production of Social Knowledge by Urban Youth in the Democratic Republic of Congo.” In Can There Be Life without the Other?, edited by A. P. Ribeiro. Manchester, UK: Carcanet Press. ———. 2010. Cemetery State. Antwerp and Amsterdam: Filmnatie/Viewpoint. Documentary film. 70 min. De Boeck, Filip, and M.-F. Plissart. 2004. Kinshasa: Tales of the Invisible City. Ghent and Tervuren, Belgium: Ludion/Royal Museum for Central Africa. Devisch, R., and W. de Mahieu. 1979. Mort, deuil et compensations mortuaires chez les Komo et les Yaka du nord au Zaïre. Tervuren, Belgium: Royal Museum for Central Africa. Dississa, Vincent. 2009. “Pouvoirs et chansons populaires au Congo-Brazzaville: Les funérailles comme lieu de la dénonciation politique.” Civilisations (Revue international d’anthropologie et de sciences humaines) 58 (2): 81–95. Durham, D., and F. Klaits. 2002. “Funerals and the Public Space of Sentiment in Botswana.” Journal of Southern African Studies 28 (4): 777–96. Engelke, Matthew. 2010. “Past Pentecostalism: Notes on Rupture, Realignment, and Everyday Life in Pentecostal and African Independent Churches.” Africa 80 (2): 177–99. Frère, M.-S. 2007. “Quand le pluralisme déraille: Images et manipulations télévisuelles à Kinshasa.” Africultures 71 (October): 47–55. Geenen, Kristien. 2009. “ ‘Sleep Occupies No Space.’ The Use of Public Space by Street Gangs in Kinshasa.” Africa 79 (3): 347–68. Gondola, Ch. Didier. 1999. “Dream and Drama: The Search for Elegance among Congolese Youth.” African Studies Review 42 (1): 23–48. ———. 2009. “Tropical Cowboys: Westerns, Violence, and Masculinity among the Young Bills of Kinshasa.” Afrique & Histoire 7:75–98. Grootaers, J. L. 1998. Mort et maladie au Zaïre. Tervuren, Belgium, and Paris: Institut AfricainCEDAF/L’Harmattan. Jewsiewicki, B., and B. White. 2005. Introduction to Mourning and the Imagination of Political Time in Contemporary Central Africa, special issue, African Studies Review 48 (2): 1–9. Jindra, Michael, and Joël Noret, eds. 2011. Funerals in Africa: Explorations of a Social Phenomenon. New York and Oxford: Berghahn Books. Kittelmann, U., and K. Gorner, eds. 2004. Teresa Margolles: Muerte sin fin. Ostfildern-Ruit, Germany: Hatje Cantz. Kopytoff, I. 1971. “Ancestors as Elders in Africa.” Africa 41 (2): 129–42. Lamont, Mark. 2009. “Interroger les morts pour critiquer les vivants, ou exotisme morbide? Encounters with African Funerary Practices in Francophone Anthropology.” Africa 79 (3): 455–62. Lee, Rebekka. 2011. “Death ‘on the Move’: Funerals, Entrepreneurs and the Rural-Urban Nexus in South Africa.” Africa 81 (2): 226–47. Lévi-Strauss, Claude. (1955) 1974. Tristes Tropiques. New York: Atheneum.

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Livingston, J. 2008. “Disgust, Bodily Aesthetics and the Ethics of Being Human.” Africa 78 (2): 288–307. Masquelier, A., ed. 2005. Dirt, Undress and Difference: Critical Perspectives on the Body’s Surface. Bloomington and Indianapolis: Indiana University Press. Mbembe, Achille. 2003. “Necropolitics.” Public Culture 15 (1): 11–40. Mudimbe, V. Y. 1999. “Reprendre: Enunciations and Strategies in Contemporary African Arts.” In Reading the Contemporary: African Art from Theory to the Marketplace, edited by O. Oguibe and O. Enwezor. London: Institute of International Visual Arts. Noret, Joel. 2010. Deuil et funérailles dans le Bénin méridional: Enterrer à tout prix. Brussels: Editions de l’Université de Bruxelles. Noret J., and P. Petit. 2011. Mort et dynamiques sociales au Katanga (République démocratique du Congo). Paris: L’Harmattan; Tervuren, Belgium: Royal Museum of Central Africa. Norris, A. 2000. “Giorgio Agamben and the Politics of the Living Dead.” Diacritics 30 (4): 38–58. Nuttall, S. 2013. “Wound, Surface, Skin.” Cultural Studies 27 (3): 418–37. Pype, K. 2007. “Fighting Boys, Strong Men, and Gorillas: Notes on the Imagination of Masculinities in Postcolonial Kinshasa (DR Congo).” Africa 77 (2): 250–71. ———. 2011. “Visual Media and Political Communication: Reporting about Suffering in Kinshasa.” Journal of Modern African Studies 49 (4): 625–45. Roosens, E. 1971. De Yaka van Kwaango: Een gevalstudie; Socio-culturele verandering in MiddenAfrika. Antwerp: Standaard Wetenschappelijke Uitgeverij. Sambu, Y. 2009. “Why, When, How.” Transition 102:12–17. Shapiro, D., and B. O. Tambashe. 2003. Kinshasa in Transition: Women’s Education, Employment and Fertility. Chicago and London: University of Chicago Press. Shklovsky, V. 2004. “Art as Technique.” In Literary Theory: An Anthology, edited by J. Rivkin and M. Ryan. Malden, MA: Carlton; Oxford: Wiley-Blackwell. Simone, AbdouMaliq. 2004. For the City Yet to Come: Changing African Life in Four Cities. Durham, NC, and London: Duke University Press. ———. 2012. The Social Infrastructure of City Life in Contemporary Africa. Discussion paper 51. Uppsala: Nordic Africa Institute. Tonda, J. 2008. “La violence de l’imaginaire des enfants-sorciers.” Cahiers d’Etudes africaines 48 (189–90): 325–43. Turner, Victor. 1967. The Forest of Symbols: Aspects of Ndembu Ritual. Ithaca, NY, and London: Cornell University Press. ———. 1968. The Drums of Affliction: A Study of Religious Processes among the Ndembu of Zambia. Ithaca, NY: Cornell University Press. Vangu Ngimbi, I. 1997. Jeunesse, funérailles et contestation socio-politique en Afrique. Paris: L’Harmattan. Vaughan, M., and R. Lee 2008. “Death and Dying in the History of Africa since 1800.” Journal of African History 49:341–59. ———. 2012. “Introduction: Themes in the Study of Death and Loss in Africa.” African Studies 71 (2): 163–75. Wastiau, B. 2000. Mahamba: The Transforming Arts of Spirit Possession among the LuvaleSpeaking People of the Upper Zambezi. Fribourg, Switzerland: University Press.

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43 THE VALUE OF LIFE AND THE WORTH OF LIVES Didier Fassin

In what is often considered to be the first tentative “comparative ethics” in anthropological literature—namely, the systematic parallel between Christian morality in Western Europe and the morality of the Gahuku-Gama of New Guinea Highlands—Kenneth Read (1955, 280) states: “From the standpoint of Christian ethics, men are moral equals. As persons, their value is constant.” This means much more than belonging to a common humanity: “The spiritual component in which all men constitute their person also confers on them an incomparable value which man is required to recognize and to espouse above all others. This worth is inalienable; it is also intrinsic, belonging to all men irrespective of status or individual accomplishments and irrespective of what they do or may have done in the usual moral sense. Thus the absolute value of the human person is prior to all other created values” (251). By contrast, the Gahuku–Gama assume that the value of men “is dependent on the position they occupy within a system of inter-personal and inter-group relationships,” which has for a corollary that “moral obligation is distributive in the sense that it varies with this social positioning of individuals” (260). A striking example of this ethical difference, the author continues, concerns homicide. For the Gahuku-Gama, “it is wrong to kill a member of his own tribe, but it is commendable to kill members of opposed tribes, provided that they are not related to him,” whereas the Christians’ “attitude toward homicide is indissolubly linked with the intrinsic personal value of the individual” (262). Turning to a more personal formulation, which includes the reader in his supposed moral community, the Australian anthropologist concludes: “With us, the individual life has an absolute value which is greater than and quite sharply

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distinguished from a value which is conferred by a specific social tie or by membership of a particular social group. With the Gahuku-Gama, however, the value of an individual life is primarily dependent on these social criteria. The reaction to homicide emphasizes the moral nature of the social bonds between individuals and groups of individuals rather than the inviolability of human life itself” (262). Thus the sanctity of human life and the equal values of all human beings would be a crucial element of the foundations of Western heritage. Writing almost half a century earlier from a radically different perspective and criticizing Adolphe Quetelet’s [remove accent over first e] famous thesis about the average man that underlies his programmatic “moral statistics,” Maurice Halbwachs (1912, 97) suggested: “There are good reasons to think that a society has the mortality that suits it, and that the number of deaths and their distribution at the different ages accurately expresses the importance a society attaches to prolonging life more or less.” This importance concerns life in general as well as the lives of certain categories whose differentiation by sex, age, or profession translates into disparities in death rates. Mortality cannot be described as a random phenomenon, just as death cannot be regarded only as a physical event: “Death, and the age when it happens, depends above all on life, on the conditions where it unfolds, and these conditions are social as much as physical” (94). In that, the French sociologist opposes the Belgian mathematician, who “would compare deaths with the fall of balls thrown by a man representing nature,” while “the distance traveled by each ball would epitomize the life of each man”; according to this model, “the average duration of life would merely result from the laws of chance” (97). Such a view supposes, however, that “the importance attached to human life, in a given society, does not vary,” which is definitely not the case, and that the unequal value of life is “the essential cause of the variations of mortality” (96). Death is therefore a social fact whose fluctuations reflect the oscillating valuation of life. How can one account for these apparently contradictory positions? Is it possible to reconcile the affirmation that the equal value of all humans is a foundational postulate of our world and the acknowledgment that the relative worth of lives is what explains the disparities in mortality rates in our societies? Is the anthropology of life irreparably incompatible with a sociology of lives? An obvious answer to these questions would be to consider that Kenneth Read’s idea that all human lives are equally sacred pertains to the moral realm and expresses an ideal principle, whereas Maurice Halbwachs’s assertion that all human lives are not worth the same concerns the social world and describes an empirical fact. Both authors would certainly have agreed on this distinction. But rather than trying to solve the contradiction, my intention here is to push it somewhat further, to recognize that the two statements tell us something different and that their confrontation is more heuristic than their tentative addition or subtraction. The first one is qualitative and concerns the equal sanctity of life. The second one is quantitative and concerns the actual inequality of lives. Both imply ideas of value and worth—in a moral rather than an economic sense.

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By considering the symbolic (life as inviolable) and material (life as duration) dimensions of life from the perspective of equality and inequality, I intend to bring back into anthropology an idea of life that is not biological but physical. Inspired by Georges Canguilhem’s pioneering work (2008), an important field of research has been developed on living matter and the life sciences (Rabinow and Caduff 2006), sometimes under the expression of “life itself” (Franklin 2000), later expanded as the “politics of life itself” (Rose 2000). Yet the physicality of life I am contemplating here does not reside in the cells or the genes but in a body and an experience. The shift I am suggesting is therefore from life as an object of science to life as the matter of an existence, delimited by birth and death—life as it is lived by human beings (Fassin 2009a). Because societies do not treat all men and women in the same way and because they do not secure similar longevity for all human lives, this approach reintegrates the question of equality and inequality, which has been largely as absent from the anthropology of life as it had been conspicuously ignored by the philosophers of biopolitics (Foucault 2008). Indeed, it is rather in what can be called, by contrast, the anthropology of lives that physical life has been apprehended as social life—in the works of Adriana Petryna on biological citizenship in Ukraine (2002), of João Biehl on patients’ relegation in Brazil (2005), of Veena Das on victims of violence in India (2007), and in mine on persons living with AIDS in South Africa (2007), for instance. Pursuing a tentative reorientation of the anthropology of biopolitics (Fassin 2010), my intention is not to present an ethnographic study but to propose a general discussion regarding the inequality of lives and its invisibility.

PRECIOUS LIFE

“Pricing life raises daunting questions,” observes Viviana Zelizer (2011, 13). “How can we establish monetary equivalents for human existence? Should we? Are all lives worth the same, or are some more valuable than others? Who decides? After the terrorist attacks of September 11, 2001, Kenneth Feinberg, appointed by Congress as special master of the Victim Compensation Fund, faced such troublesome issues. Because his compensation scheme used lost economic values as its main standard, survivors of victims with low or no earning received significantly less compensation than high earners.” Two facts are remarkable in this example: the translation of life in financial terms (the families of the deceased received an average of $3.1 million) and the affirmation of the inequality of lives (the amounts distributed ranged from $788,000 to $6,379,000, depending on the previous income of the victim), a situation that could be paralleled with that of the Bhopal disaster and the legal litigations about victim compensation studied by Veena Das (1995). Clearly, this economic evaluation of lives lost and the bureaucratic work it implies seem to contradict the sacredness of life, which would imply its pricelessness. But the variations, with a ratio of one to nine, in the financial compensation appear to violate the principle of equality of lives. Indeed, these are the criticisms that were publicly expressed about the process and its author: How can one dare allocate a financial equivalent to a

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human life? And how can one consider that one human life deserves a higher compensation than another? (Of course, the two recriminations are incompatible since the first one annuls the second.) One might be tempted to see in this commodification of life, with its corollary of social injustice, a contemporary neoliberal deviance from the original principles that defined Western morality. But is this so indisputable? That Christian ethics be grounded in the equal sanctity of life, meaning both the equality of all human beings and the sanctity of life, as Kenneth Read and probably many people born and raised in the Christian world would believe, is more a recent intellectual construction than a historical fact. In his study of “asymmetrical antonyms” in Western representations of the human world, Reinhart Koselleck (1990, 212–13) analyzes the political concepts that were used to distinguish the self and the other, often with tragic consequences on the way to contemplate and treat this other, whether one considers the Hellenes and barbarians in Greek antiquity or the Christians and Pagans in the Catholic Middle Ages. Rather than the idea of a common humanity, these antonyms imply the existence of two social categories, the second one being the negation of the first: barbarians as non-Hellenes and pagans as non-Christians. No moral universalism there. This representation of human beings had concrete outcomes in words and acts. In the Catholic world, explains the German historian, Muslims and Jews were both racialized and caricatured, described as perfidi and inimici Dei, accused of blackness both literally and metaphorically, which justified combating and killing them. The Spanish Inquisition pushed this logic to an extreme, repressing even the conversos. Later the French Wars of Religion revealed that, even among Christians, divisions could also lead to exclusions and massacres in the name of their faith. The First Crusade offers an interesting example of how the Church dealt with life and lives. According to William of Malmesbury ([1120] 1848, 359–63), in 1095 Pope Urban II exhorted his “dearest brethren” to fight “the Turks and the Saracens” who “usurp even the sepulchre of our Lord.” In his speech, he uses a racial interpretation to account for the victorious conquests of his enemies and justify his fiery call for vengeance: “Every race born in that region, being scorched with the intense heat of the sun, abound more in reflexion, than in blood; and therefore they avoid coming to close quarters, because they are aware of how little blood they possess. You are a nation born in the more temperate regions of the world; who may be both prodigal of blood, in defiance of death and wounds, and are not deficient in prudence. Go, soldiers everywhere renowned in fame, go, and subdue these dastardly nations.” A difference of physical nature is therefore the cause of the difference in the culture of warfare, since the Muslim “never ventures upon close fight, but bends his bow at a distance and trusts the winds with his meditated wounds, and as he has poisoned arrows, venom and not valour, inflicts the death on the man he strikes.” From the racial traits (lack of “blood”) derive the moral features (want of “valour”). In the rest of his plea, the pope urges his troops to accept “martyrdom” in the name of God: “Do you fear death? Know ye not ‘that for men to live is wretchedness, and happiness to die?’ This doctrine, your ancestors, the martyrs, held out by example.

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Death sets free from its filthy prison the human soul. Death cuts short the wickedness of the ungodly. So long as it is fettered to the body, the soul derives from it earthly contagion; or to say more truly, is dead.” Thus, not only is life not sacred, but it is through its sacrifice that the believer can please God. What should be valued is not life but death—that is, the death of the martyrs. Indeed, handling the paradox, Urban II even affirms that, because of the imperfection of the body, the soul is dead as long as one is alive, and only death revives it. In other words, Catholic raciology and eschatology establish that humans, divided between Christians and non-Christians, are naturally unequal, and that life—meaning restrictively the life of the Christians—is worthy only when it is sacrificed. The prelate’s eloquence on this occasion was rewarded, since following his sermon, “the itinerants were estimated at six millions,” passionately rushing toward their holy mission. “Never did so many nations unite in one opinion,” the chronicler enthusiastically concludes. The Christian doctrine of the time is certainly at odds with its contemporary reinterpretation. Far from being an immutable truth, the ideal of the equality of all human beings and of the sanctity of life seems a more recent invention. However, its genealogy is complex and debated. Whereas it is often considered that the concept of humanity comes from the Enlightenment, having reached its more powerful expression with Kant, the first edition of the Dictionnaire de l’Académie française (1694) already provides these definitions of man: “Reasonable animal. In this sense comprises the entire human species”; and of humanity: “Human nature. Kindness, honesty, goodness.” And these two meanings of mankind and humaneness are even abundantly present in Cicero’s work in the dual form of “commune humanitas,” in association with “jus” or “causa”; and of “cum humanitate,” in association with “clementia” or “mansuetudinis” (Lewis and Short 1879). Consequently, does the idea of humanity, in both of these senses, derive from eighteenth-century philosophers, classical authors, or ancient thinkers? Even more troubling, while Giorgio Agamben (1998) situates the origin of the sacredness of life in ancient Rome with the figure of “homo sacer,” Hannah Arendt devotes a chapter to “Life as the Highest Good,” in The Human Condition (1998, 314), in which she focuses on “a Christian society whose fundamental belief in the sacredness of life has survived,” but argues, in the chapter titled “The Social Question” in On Revolution (1990, 109, 112), that the French Declaration of the Rights of Man privileged “the rights of life and nature rather than the rights of freedom and citizenship” and that the French Revolution as well as those later influenced by Marxist ideology were merely “nourished by the necessity of biological life itself.” So, did the valuation of life as supreme commonweal originate in the Roman Republic, with the Church Fathers, or among revolutionary thinkers? Rather than tracing the uncertain genealogy of this principle, it may be more reasonable to analyze how and where the ideas of common humanity and sacred life came together. A first approach, often celebratory, consists in examining foundational texts of modern societies. Thus Lynn Hunt (2007, 15) begins her “history of human rights” with

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the terms of the preamble of the Declaration of Independence of the United States, in the first draft written by Thomas Jefferson: “We hold these truths to be sacred and undeniable, that all men are created equal and independent, that from that equal creation they derive rights inherent and inalienable, among which are the preservation of life, and liberty, and the pursuit of happiness.” As is well known, the final version removed the word sacred and added the Creator. As is also common knowledge, this generous formulation did not stop the organization of slavery and its moral justification for the next century, the massacre of native populations and the rendering of an inferior status to its survivors, the practice of racial discrimination for almost one hundred years more, and the upholding of the death penalty until today—all elements that substantially limit the empirical scope of the equality of human beings and the sanctity of life. A second approach, more realistic, accounts for the formation of this ideal in practices rather than in texts, whether these practices are discourses or actions. This is the path followed by Samuel Moyn (2010, 9) in his alternative “human rights in history,” attentive to “how and when human rights took shape as a widespread and powerful set of aspirations for a better and more humane world,” which leads him to propose a much shorter history, starting in the 1970s, as this novel utopia replaces previous ones that had served to combat colonial oppression, capitalist exploitation, or class domination. Rather than the existence of values inscribed in religious doctrines, philosophical writings, or official documents, it is their concrete mobilization by international agencies, nongovernmental organizations, and various sorts of activists across the world that defines the birth of human rights. Adopting this perspective, one can assert that the recent emergence of humanitarianism epitomizes the encounter between the two principles of human equality and sacred life: it is founded on the responsibility toward all mankind and on the obligation to save lives wherever they are threatened (Fassin 2012). Interestingly, the remote origins of humanitarianism take two distinct forms in two different historical moments: the antislavery movement, in the late eighteenth and early nineteenth centuries, which proclaims the equality of all human beings, pleading for the abolition of the slave trade and the emancipation of slaves; and the affirmation of humanitarian rights on the battlefield at the end of the nineteenth century, emphasizing the protection of wounded soldiers and of civilians. Yet, in spite of this long genealogy, humanitarianism remained a relatively marginal utopia until the 1970s, when it took on a growing importance in political rhetoric, soon becoming a global leitmotif in the justification of human action. On the one hand, in the aftermath of the Biafra tragedy, Médecins sans Frontières and Médecins du Monde were created in 1971 and 1980, respectively, opening the way for a new creed among nongovernmental organizations: saving lives and alleviating suffering increasingly replaced previous progressive doctrines, whether developmentist or revolutionary. On the other hand, although the 1971 intervention of the Indian army in Bangladesh in the name of the defense of endangered populations did not receive international approval, the idea of a right to intervene gained momentum among Western states, eventually being transformed into the principle

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of the “responsibility to protect” in 2005 by a vote at the United Nations: with or without the clearance of international bodies, military operations in Somalia, Kosovo, and Afghanistan were declared humanitarian (Fassin and Pandolfi 2010). This parallel evolution consecrated a new language in international relations. The paradox, however, is that the humanitarianization of the theater of military operations did not achieve the two goals of treating human beings equally and saving lives. Thus, whereas the 1999 intervention in Kosovo was described as “humanitarian” by the Czech president, Vaclav Havel, and the British prime minister, Tony Blair, the decision by NATO commanders to have bombers fly at an altitude inaccessible to Serb antiaircraft defense led to ballistic errors that resulted in the deaths on the ground of at least five hundred Albanian-speaking civilians (Ignatieff 2000): in order to obtain a “zero death” objective for Western pilots—and indeed no casualties were suffered—one had to accept substantial “collateral damage” among the very populations in favor of whom the operations were decided. Even in the context of “peacekeeping” operations, the way local populations are treated often reveals dramatically differential norms and values, as was the case when Canadian troops secured Somalia in 1993 (Razack 2004): far from being exceptional, as the military authorities argued, racism was constitutive of this form of a mostly Western presence in the global South and generated various kinds of abuse, including murder. In some cases, the death of local civilians—by mistake or on purpose—can lead to compensations, which in fact confirm the inequality of lives. In Iraq, in 2006, the “tariff ” set by the U.S. government was twenty-five hundred dollars. By comparison, it was four hundred thousand dollars for a U.S. soldier killed in the line of duty. The life of the former was 160 times less valued than that of the latter. In a much more benign manner but with sometimes no less tragic outcomes, nongovernmental organizations themselves do not escape these logics: the distinction, in their personnel, between expatriates and nationals implies substantial discrepancies in terms of employment contracts, remunerations, and rights; undesirable and unintentional effects may also include the impossibility of providing nationals costly medical treatments, which are available for expatriates, and even of ensuring the former protection in cases of attacks, which generally spare the latter. In 2004, the ransom paid for the release of a director of the Swiss branch of Médecins sans Frontières taken hostage in Dagestan was rendered public when the Dutch government sued the humanitarian organization for not repaying the money the former had loaned it: one learned that the price of the life of a Western aid worker could be as high as one million euros. By contrast, in most places where relief is conducted in the world, local workers are usually not kidnapped, but simply killed: belligerents or gangs operating in these areas do not consider them to be serious candidates for ransoms. To return to the compensation provided to the families of victims of 9/11, neither the principle of a financial evaluation of human life nor the dissimilar implementation of this principle should be a surprise. Even in humanitarian interventions, whether conducted by military forces or by aid agencies, a figure can be set for a human life, and

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this price varies considerably according to the status, citizenship, or origin of the person. The fact is all the more remarkable, however, since the ethical premises of humanitarianism are based on the sacredness of life and the equality of human beings. What it suggests is that the valuation of life as supreme good does not mean it is priceless and that the affirmation of its universality does not prevent compromises in practice. This conclusion, which might have been a cause of perplexity for Kenneth Read, would probably have seemed quite reasonable to Maurice Halbwachs.

S TAT I S T I C A L L I V E S

“There is a distinction between individual life and statistical life,” writes Thomas Schelling (1984, 115). “Let a six-year old girl with brown hair need thousands of dollars for an operation that will prolong her life until Christmas, and the post office will be swamped with nickels and dimes to save her. But let it be reported that without a sales tax the hospital facilities of Massachusetts will deteriorate and cause a barely perceptible increase in preventable deaths, not many will drop a tear or reach for their checkbooks.” This brief observation by an economist celebrated for his contribution to game theory can actually be interpreted on two distinct levels: emotional and cognitive. The first one concerns the attachment one manifests toward the suffering individual as opposed to the distance one feels for statistics of mortality. The second one involves the differential capacity to apprehend a case with a story on one hand and a number with a probability on the other. We are more susceptible to act in favor of the little girl than of the prevention measure not only because we are moved by her concrete situation, but also because we cannot seize the abstract reality of the second example. Statistical lives are not only more distant; they are also more opaque. Hence their social and moral invisibility. In the introduction to his famous Discourse upon the Origin and the Foundation of the Inequality among Mankind, Jean-Jacques Rousseau ([1755] 1910, 167) establishes a distinction between two kinds of disparities: “I conceive two species of inequality among men; one which I call natural, or physical inequality, because it is established by nature, and consists in the difference of age, health, bodily strength, and the qualities of the mind, or of the soul; the other which may be termed moral, or political inequality, because it depends on a kind of convention, and is established, or at least authorized, by the common consent of mankind.” And he adds: “It were absurd to ask, what is the cause of natural inequality, seeing the bare definition of natural inequality answers the question: it would be more absurd still to enquire, if there might not be some essential connection between the two species of inequality, as it would be asking, in other words, if those who command are necessarily better men than those who obey; and if strength of body or of mind, wisdom or virtue are always to be found in individuals, in the same proportion with power, or riches: a question, fit perhaps to be discussed by slaves in the hearing of their masters, but unbecoming free and reasonable beings in quest of truth.” Not only is it ludicrous to investigate “natural inequality,” but it is also preposterous to attempt to

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relate it to “moral inequality.” Actually, at the time, what was missing was an instrument and a concept to think of physical inequality as being socially determined. The instrument is statistics, and the concept is that of population. Ironically, the classic study in historical demography carried out by Alfred Perrenoud in Geneva long after the publication of this discourse demonstrated that in the city where Rousseau lived, those who reached the age of sixty were 63% more numerous among the wealthy than among the poor (Bourdelais 2000). But to become visible, this disparity necessitated the formulation of tables of mortality, which the English mathematician John Graunt, considered to be the founder of the statistical study of population, had conceived in the seventeenth century. Yet the acquisition of this method was not sufficient. To establish the existence of social inequality in death rates or life duration, two other elements were indispensable: the elaboration of a socioeconomic stratification and the intuition of the correct interpretation. At the end of the eighteenth century, the French demographer Jean-Baptiste Moheau (1778) succeeded in the former, but partially failed at the latter. In his Recherches et considérations sur la population de la France, commenting on mortality tables, he correctly remarks that “fortune, which introduces such a large difference in the fate of men, dooms some to work and suffer, and allows others to profit and oppress, is also unfair in the distribution of the most precious of all goods: the duration of life” (154–58). However, his further remarks involve more moral than social arguments: admittedly, he acknowledges that “destitution is a slow poison,” but he immediately adds that if, during their first year of life, abandoned children die twice as much as those raised in a family, “it is due not only to lack of care, but also often from the bad constitution of these children who, being the fruit of debauchery, keep traces of it.” Half a century later, the French hygienist Louis-René Villermé (1830) undertook a systematic comparison of death rates in the neighborhoods of Paris, introducing three main variables: the density of the population, which was at the time a major explanation; the quality of the environment, in terms of proximity of the river, force of the wind, or presence of waste water; and finally, the level of poverty, estimated from the proportion of inhabitants not paying taxes. The first two series did not show any correlation, but the last one clearly did, and the author concludes that “wealth and poverty are, via the conditions in which they place people, the main causes (not the only ones) to which one must attribute the great differences observed in mortality,” later developing the material conditions of living that seem to explain “the influence of fortune and the impact of destitution” (312, 332). This study is regarded as the first to establish the economic determination of differences in mortality rates and thus the social inequality in life duration. The development of “moral statistics” in the nineteenth century and the emergence of “social epidemiology” in the second half of the twentieth century engendered increasingly sophisticated knowledge and evolved into a prolific field of research in recent decades: social inequality in health (Marmot and Wilkinson 1999; Berkman and Kawachi 2000). This considerable production of empirical and theoretical information discussed in conferences and disseminated in books has not sufficed, though, to generate a collective

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awareness of the problem. France prides itself on having the world’s best health-care system, after a ranking of national performances by the World Health Organization in 2000, but no one ever mentions that it is the country with the greatest disparity in mortality rate and life expectancy in Western Europe: at the age of thirty-five, a nonskilled worker has two and a half times more risk of dying before the age of sixty and nine years less left to live than a physician or a professor (Fassin 2009). But there is no public debate and no public policy taking into account this reality. When the law that raised the minimum age of retirement was discussed and then enacted in 2010, the fact that according to one’s social class the number of years left to enjoy this period of life could vary substantially was not evoked: blue-collar workers retire at the same age as senior executives, despite a difference of almost five years in life expectancy at the age of sixty. This ignorance is wittingly maintained. During the discussion of the 2004 Public Health Law, one senator submitted an amendment to inscribe in the legislation the objective of combating social inequality in health: both the minister of health and the chair of the Health Committee in the parliament rejected the proposal. During the preparation of the National Strategy for Research and Innovation in 2009, a scholar participating in the Committee for Life Sciences and Medicine requested that health inequality be included in the scientific priorities for the future: the Ministry of Higher Education disregarded the suggestion. Thus, while the murder of a young woman by a man recently liberated from jail on parole provoked a national outcry in France and, in spite of the extremely low rate of this type of recidivism, prompted the president, Nicolas Sarkozy, to call for a new law rendering the conditions of parole much stricter, no public official ever expressed any concern regarding the tens of thousands of premature deaths due to social conditions. The United States provides an extreme example of inequality in life expectancy according to social and racial characteristics. Using data from 1980—that is, before the beginning of the AIDS epidemic, which exacted a dramatic toll on the lives of urban African-Americans—two epidemiologists published a “special article” in the New England Journal of Medicine titled “Excess Mortality in Harlem” (McCord and Freeman 1990). They established that among inhabitants of central Harlem, 96% of whom were black, the standardized mortality ratio was respectively 2.91 and 2.70 for men and women when compared with ratios for U.S. whites, meaning a death rate almost three times higher. This figure reached six times higher for men thirty-five to forty-four years old and women twenty-five to thirty-four years old. Contrary to what one would have imagined, violent causes or drug abuse were not mainly responsible for this excess mortality, which was due instead to cardiovascular disease, cirrhosis, and cancer—in other words, ordinary etiologies—with homicide representing only one death out of seven. A striking parallel was drawn: men living in this part of New York City were less likely to reach the age of sixty-five than men in Bangladesh. The authors concluded: “Harlem and probably other inner-city areas with largely black populations have extremely high mortality rates that justify special consideration analogous to that given to natural-disaster areas.” But they realistically added: “Knowledge of the history of previous efforts to improve health

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in Harlem does not lead to optimism about the future” due to lack of funding and will (173, 177). Indeed, despite these extraordinary findings, which situate part of the population of the richest nation on the planet below that of one of the poorest countries, it does not seem that such a reality has raised awareness in the general public or among policy makers. Actually, since this study was published, most demographic data point to an increase in disparities, indicating a decline of the average performance of the country (Bezruchka 2012). The United States appears to be one of the rare developed nations with a recent decrease in life expectancy at birth: 78.5 years in 2011, 1.1 year less than in 2010. In fact, from ninth in rank in the 1950s, it has plummeted to thirty-fourth for life expectancy at birth, behind most European countries, including Greece, as well as several Latin American ones, such as Chile and Cuba. There is an even more spectacular trend downward with regard to indicators particularly sensitive to socioeconomic conditions and medicalsystem accessibility: the United States now ranks forty-first for childhood mortality and fifty-first for maternal mortality, when it had the lowest rate worldwide for these benchmarks six decades ago (Bezruchka 2012, 160–62). This poor performance is all the more remarkable since the country has by far the highest expenses for medical care, which represent 42% of the global health budget (Bezruchka 2012, 165–67). The apparent paradox has two simple explanations. First, the profound disparities in access to the medical system imply that part of the population spends large amounts on health while many have minimal coverage, twenty million being completely excluded from care in spite of what is considered to be comprehensive health reform. Second, on a more general level, it is well established that medical care has little impact on health disparities, which are essentially dependent on structural changes in society. But the overall disastrous mortality rates and life expectancies in the United States represent only the quantitative aspect of a broader situation that could be analyzed in qualitative terms, considering living and housing conditions, the decline in welfare benefits, and the practice of mass incarceration—that is, the experience of precarious lives in dire circumstances with uncertain futures. Statistical lives are not an abstraction; they are a reflection of concretely lived lives. In her article titled “Life, Chance & Life Chances,” Lorraine Daston (2008) opposes two “social fantasies”: that of the Borgesian “lottery,” which randomly distributes social places, and that of the Rawlsian “veil of ignorance,” which fairly allocates resources to citizens. Luck reigns in the first, justice in the second, and chance in both. Using this distinction, one can understand why, when reality moves so flagrantly away from the ideal of justice, luck seems to be a reasonable option to account for one’s fate. In a world of profound inequalities in life chances, fairness is difficult to lucidly envisage, and most people tend to believe that their existence is like a lottery. Rather than confronting the unjust social system that produces such deep disparities in the value of lives, those who benefit from it consider that people deserve to be where they are, whereas those whom it penalizes are doomed to accept it, hoping for the moral relief of religion and the financial assistance of charities, with the distant expectation that chance might favor the next

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generation. The meritocratic myth and philanthropic practices allow the reproduction of this delicate balance, which justifies and consolidates the inequality of lives. The imagined case of the little brown-haired girl needing a vital operation and of the hospital improvements preventing numerous deaths is an allegory of which real examples are not lacking. Emotional mobilization, cognitive apprehension, and social awareness are much more intense regarding the few unfortunate (mostly white middle-class) victims of a shooting than the hundreds of thousands of (mostly black lower-class) lives lost due to social inequalities. The fact that the didactic fable concerns a girl whose life is threatened could, however, be a pretext to examine the unfavorable situation of women in many parts of the globe that translates into dramatic differentials in mortality rates and life expectancies, which are not rendered more visible than those related to social class. Rarely debated in the public sphere and little acknowledged by public policies, these statistical lives are rendered insignificant. Yet the disparities they reveal are the indication of the value that a given society is ready to assign to the life of the human beings who constitute it. But this public secret is well kept.

CONCLUSION

Confronting Kenneth Read’s view of ethics and Maurice Halbwachs’s approach of demographics raises important questions for contemporary societies. The affirmation of the sacredness of life and the equality of human beings—which is indeed part of the modern creed—can thus be put to the test of the reality of unequal lives, which contradicts both principles, even in the domain where one would assume they are best defended (humanitarianism) and in the country where they are allegedly foundational to the spirit of the nation (the United States). Anthropologists have mostly left these questions to philosophers, epidemiologists, and sociologists. There might be an intellectual and political urgency to reconsider the anthropology of life from this perspective.

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Rabinow, Paul, and Carlo Caduff. 2006. “Life—after Canguilhem.” Theory, Culture & Society 23 (2–3): 329–31. Razack, Sherene. 2004. Dark Threats and White Knights: The Somalia Affair, Peacekeeping, and the New Imperialism. Toronto: University of Toronto Press. Read, Kenneth. 1955. “Morality and the Concept of the Person among the Gahuku-Gama.” Oceania 25 (4): 233–82. Rose, Nikolas. 2000. “The Politics of Life Itself.” Theory, Culture & Society 18 (6): 1–30. Rousseau, Jean-Jacques. (1755) 1910. A Discourse upon the Origin and the Foundation of the Inequality among Mankind. Harvard Classics. New York: P. F. Collier & Son. Schelling, Thomas. 1984. Choice and Consequence. Cambridge, MA: Harvard University Press. Villermé, Louis-René. 1830. “De la mortalité dans les divers quartiers de la ville de Paris, et des causes qui la rendent très différente dans plusieurs d’entre eux, ainsi que dans les divers quartiers de beaucoup de grandes villes.” Annales d’hygiène publique et de médecine légale 3:294–341. William of Malmesbury. (1120) 1848. Chronicle of the Kings of England. Translated from Latin by J. A. Giles. London: Henry G. Bohn. Zelizer, Viviana. 2011. Economic Lives: How Culture Shapes the Economy. Princeton, NJ: Princeton University Press.

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44 THE EVOLUTION OF MORTALITY RATES BY SEX The Experiences of the Rich and the Uncertainties of the Not-So-Rich

Rabia Ali and Jishnu Das

Large variations in mortality rates arguably reflect one of the severest manifestations of global inequities in the world today. If mortality numbers routinely released by the World Health Organization (WHO) are taken at face value, in countries like Iceland, 56 of every 1,000 men and women will die between the ages of fifteen and sixty. In China that number rises to 113 and in India closer to 213. In central and western Africa, these mortality rates regularly exceed 300, and in many countries they are closer to 400. And in HIV/AIDS-affected countries, the numbers rise to between 481 (Malawi) and 772 (Zimbabwe). Starkly put, the risk of dying for adults in many countries in sub-Saharan Africa, for instance, is higher than for those in the midst of conflict (such as that in Iraq [285] or Afghanistan [479]). This chapter uses mortality patterns over the life course of men and women as a lens through which to examine gender inequality and health. At the heart of this chapter is a worldwide historical exercise based on mortality patterns going as far back as data allow— in some cases, like Sweden, to the mid–eighteenth century. These historical data have been used extensively, for instance, to document the sharp and continuing decline in overall mortality since the eighteenth century, a decline that has increased life spans by thirty years just since 1900 (see Cutler, Deaton, and Lleras-Muney 2006). We construct at every age the sex ratio of mortality or the ratio of the mortality rate for men and women, for all countries with available data from the earliest date available. By the way it is defined, the sex ratio of mortality, or SRM, will fall with a decline in female mortality (keeping male mortality constant) and will rise with an increase in male mortality (keeping female

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mortality constant). These data then allow us to examine historical patterns of mortality transitions for men and women in today’s high-income countries and (potentially) compare them with the recent experience of low- and middle-income countries. We first document striking similarities in the historical evolution of the SRM for today’s high-income countries. In the nineteenth century, women died at higher rates than men between the ages of ten and forty, but at lower rates for the older ages. As the nineteenth century came to a close, the decline in female mortality exceeded the decline in male mortality. Throughout the twentieth century, the female advantage in mortality continued to rise, and by the 1990s the SRM in many high-income countries had a similar pattern: women enjoyed lower mortality rates throughout their lives, with the differences particularly accentuated in late adolescence and the early twenties and then again past the age of sixty. Between 1990 and 2010, there have been signs of an incipient turnaround in male mortality, which appears to have decreased at a faster rate than female mortality both in the late adolescent years and in the older years. Two broad sets of hypotheses have been advanced for the observed evolution of the SRM. One view, based on the spatial and occupational distribution of mortality, suggests that female mortality rates were high in regions and occupations where the status of women was low. Economic opportunities improved the status of women in society and reduced mortality rates, more so for women than for men. Better nutrition is arguably one channel through which higher status for women within the family translated into decreased mortality (see Tabutin 1978; Ginsberg and Swedlund 1986; Kennedy 1973; Johansson 1977; Humphries 1991). A second view, based on remarkable similarities across countries in the timing of SRM changes, privileges the arrival of modern public health in the form of clean water and sanitation systems, and later the rise of modern medicine and the concomitant decline in maternal mortality, as driving forces in the decline of female mortality (World Bank 2011). The two views are not mutually exclusive: discrimination against women and their low status could have been dominant forces in the nineteenth century when medicine was largely ineffectual and the germ theory of disease was in its infancy. However, as public-health measures became part of the institutional landscape in high-income countries, the costs of discrimination could have declined. Perhaps households still favored sons over daughters, but if the water that came from the tap was clean, it didn’t matter whether you boiled it for the son and not for the daughter. This line of argument mirrors the debate over the causes of overall mortality decline and recognizes that individual-specific determinants (like nutrition) were likely predominant in historical periods when medicine had little to contribute to population health (Cutler, Deaton, and Lleras-Muney 2006). The proximate determinants for mortality declines among men and women are important for low-income countries today. With a wider understanding of both how diseases propagate in populations and the link between basic public-health measures and the health of a population, the institutional view offers an alternate path to reductions in mortality. There are tantalizing hints from studies based on a small number of

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countries that the historical evolution of SRMs in high-income countries may be similar to those patterns observed in low-income countries today, despite the immense advances in our knowledge and use of medicine. For instance, Dominique Tabutin (1992) and M. A. el-Badry (1969) use survey data to demonstrate that excess female mortality has been a feature of the mortality profiles in some low-income parts of the world and has indeed declined, mirroring the experience of the Organisation for Economic Co-operation and Development (OECD) member countries. Unfortunately, data issues limit the extent to which these studies can be extended to a wider sample of low-income countries and to a longer time period. As we document below, the primary source of information for mortality rates in all countries is the World Health Organization’s Global Health Observatory. As it turns out, whether this story resonates with the experience of low-income countries today depends on the date when these mortality data published by the World Health Organization were accessed. Data that we accessed before March 2013 showed that low-income countries were proceeding through a transition similar to that of the high-income countries till the 1990s, so that the SRM in several such countries looked very much like that in European countries around the turn of the nineteenth century. This is what is highlighted both in the 2012 World Development Report (World Bank 2011) and in previous research by Siwan Anderson and Debraj Ray (2010), who derive a composite measure of “missing women” by age for a number of countries by relating the sex ratios of mortality in low-income countries to those in OECD countries today. The story that is then told by the data accessed prior to March 2013 is that the transition derailed due to, first, the differential effect of HIV/ AIDS on female and male mortality in several African countries,1 and second, the dramatic rise in male mortality in posttransition countries like Ukraine and Russia.2 Finally, in countries like India and China (but also the Caucasus), a female deficit manifested itself in gender-disaggregated risks of mortality observed not just during the life course, but also at the moment life begins, through the rise of sex selection at birth.3 The narrative becomes less clear when we recomputed SRMs using the latest revision of the data after March 2013. Using the examples of China, India, and Tanzania, we show that the new data are not comparable to the old in some cases (China and Tanzania) but closely resemble the old in others (India). Where the data change, they fundamentally alter the nature of the comparison, and there is no clear rationale for why they have changed for some countries and not others. As we will show later in this chapter, the problem arises because, depending on the direction of the change, even seemingly small revisions in mortality rates for men and women separately can lead to substantial revisions in the SRM, which divides one small number (the mortality rate among men at every age) by another (the mortality rate among women at every age). Revisions in mortality rates for the year 1990, for example, were large—in some cases reducing mortality to 30 percent of the original value (age group twenty to twenty-four in China) and in others increasing it to 148 percent of the original value (age group fifteen to nineteen in Tanzania).

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These revised data are not accompanied with documentation of revisions for each country, the reasons for the revisions, or how they may affect previous analyses of mortality rates. Neither could we find a repository of the older estimates that would allow researchers to evaluate how the data have changed; we are able to do so here because we used data that we had accessed both before and after the revisions. Given that these changes affected the estimated mortality rates for 1990 as well, at this point it is difficult to take this revision as sacrosanct. Therefore, the only message we can support is caveat emptor: we will probably never know how SRMs evolved or are evolving in low-income countries today before either death-registration systems improve or mortality data are collected and made available routinely through nationally representative surveys. In the remainder of this chapter we discuss where the data come from, present the main findings from high-income countries, discuss the problems of extending this analysis to low-income countries, and conclude with a short discussion.

D ATA

For a number of countries that are today classified as having high-income economies, gender-disaggregated mortality data are available as far back as the eighteenth century through the Human Mortality Database (HMD). The database contains detailed population and mortality data for thirty-seven countries or areas, including original calculations of death rates and life tables for populations (countries or areas), and the input data used in constructing those tables. The input data consist of death counts from vital statistics, plus census counts, birth counts, and population estimates from various sources. The database is limited by design to populations where death registration and census data are virtually complete, since this type of information is required for the uniform method used to reconstruct historical data series. As a result, the countries and areas included are relatively wealthy and for the most part highly industrialized. The process for computing mortality rates and life tables4 consists of six steps, corresponding to six data types that are available from the HMD: births, deaths, population size, exposure to risk,5 death rates,6 and life tables. All mortality data for high-income countries presented or used in this chapter are extracted from the HMD. Although the populations included in the HMD have a relatively high coverage of census and vital registration systems, there is evidence of both age heaping7 and age exaggeration in the data.8 (See the HMD at www.mortality.org.) The data have been corrected for gross errors9 but not for systematic misreporting of age or over- or underenumeration of people or events (coverage errors). There is little information on the extent of such coverage errors, since studies assessing the completeness of census coverage or death registration in these countries do not exist. The misreporting of age is, in part, dealt with by analyzing data in five-year age groups, but age exaggeration remains a problem. Since age reporting in death-registration systems is typically more reliable than in census counts or official population estimates, population estimates at older ages are derived

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from the death counts themselves. Such methods eliminate some but not all of the biases in old-age mortality estimates that occur due to age exaggeration. Uninterrupted series of gender-disaggregated mortality estimates from other parts of the world not included in the HMD are sparse and, where they exist, are available for recent decades only. Mortality data for low- and middle-income countries used in this paper are available from the WHO, which began producing annual life tables for all its member states in 1999. These life tables are available from the WHO Global Health Observatory for the years 1990, 2000, and 2011, and are based on a systematic review of all available evidence—from surveys, censuses, sample registration systems, population laboratories, and vital registration—on levels and trends in under-five and adult mortality rates. According to the WHO, the estimates are most reliable for countries whose deathregistration data are assessed as complete, followed by those based on incomplete or sample death-registration data with adjustments for levels of completeness. For countries without usable death-registration data, uncertainties are substantially higher, and two categories can be distinguished: (a) those countries for which there is independent evidence on adult mortality rates from surveys or censuses; and (b) those for which estimates of adult mortality levels are derived from model life tables, with estimated infant and child mortality rates as inputs. Estimates for countries with significant levels of mortality due to conflict and natural disasters (say, greater than one death per 10,000 population per annum), or HIV/AIDS, have additional uncertainty due to further adjustments needed for estimating conflict and disaster death rates.10 Therefore, considerable caution is required in taking these data at face value. Although in our original analysis (World Bank 2011) we realized that the data were problematic and based on extrapolation for several countries, we did not fully comprehend how these errors could affect the analysis of sex mortality rates till we started looking at the WHO’s 2013 release of the data. As we document below, in this latest release, the estimates for the years 1990 and 2000 were revised, and these revisions can lead to dramatic differences in the patterns of sex mortality rates for today’s low-income countries. Understanding precisely what can and cannot be said based on these data remains beyond the scope of this chapter; in either case, what the story below does suggest is that these mortality estimates should be taken (at the minimum) with a degree of skepticism and caution.

PAT T E R N S

The idea that women’s overall advantage in mortality—a higher life expectancy or lower aggregate mortality rate compared with men—conceals a significant disadvantage in mortality at certain age groups is not new. In 1885, William Farr, who initiated the collection of vital statistics in England and Wales, showed that English girls and women died at higher rates than English boys and men between the ages of ten and forty in the early nineteenth century (Farr 1885). Further, between the ages of ten and twenty, about 5 percent more females died than males, and between thirty and forty, female mortality

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was about 10 percent higher. Studies examining trends in sex differences in age-specific mortality started appearing in the second half of the twentieth century. George Stolnitz, in his 1955 review of mortality declines across the globe, notes that in most of Western and non-Western Europe, survival rates for males were lower than for females at some age groups prior to the 1920s, but that at least since 1930, lower female mortality became typical at all ages. Moreover, the female advantage in longevity increased in most of these countries during the earlier half of the twentieth century. Similarly, Dominique Tabutin (1978) looks at the emergence and growth of excess female mortality in France, Sweden, Belgium, and England and Wales. In France from 1750 to 1790, he finds excess female mortality between the ages of one and ten and between twenty-five and forty-five as well as higher mortality among males above the age of sixty-five. Excess mortality among girls five to fourteen years old persists through the first two decades of the twentieth century, while that among women in the reproductive ages vanishes by the last quarter of the century. In Sweden, mortality rates at each age are higher among men than among women until 1870–75, when excess female mortality first appears in the ten-to-nineteen-year age group, worsens, and then disappears completely by 1925–30. Excess female mortality in the reproductive ages appears briefly during 1901–10, but disappears by 1921–30. In England and Wales and in Belgium, excess female mortality exists among adolescents in the nineteenth century (the earliest data used in the study) and disappears by 1920. Ingrid Waldron (1993), in her study of twenty-two high-income countries and three regions of the United Kingdom, examines more-recent developments in gender differences in mortality. She shows that between 1979 and 1987, sex ratios of mortality generally increased for twenty-five-to-thirty-four-year-olds, while other age groups showed mixed trends. For example, for adults aged fifty-five to sixty-four, sex ratios of mortality increased in the southern and eastern European countries and Japan but decreased in the northern European and Anglophone countries. Here, we expand the set of countries and lengthen the time span of the analysis to more recent years, essentially weaving together previous analyses and adding to them by looking at the most recent data available. We reach similar conclusions: historical mortality rates across today’s rich countries evolved in similar ways and are characterized by a decline in relative female disadvantage in mortality, ultimately giving way to excess male mortality at all ages in the twentieth century. More specifically, during the nineteenth century, our “rich country” sample had excess female mortality between the ages of ten and twenty and between thirty and forty, and excess male mortality at the higher ages. These female disadvantages vanished as countries headed into the twentieth century, and by 1950 every country displayed excess male mortality at every age. The SRMs in 1950 looked remarkably similar across these countries, with a peak in late adolescence and again around the age of sixty. This “doublepeaked” SRM remains a stubborn feature of sex mortality profiles today, although there is evidence that it is beginning to change. Most notably, between 1990 and 2010, the

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male disadvantage in rich countries started to decline, both in late adolescence and in the older ages, although the timing of the decline and the age groups that were most affected varies across countries.

E N G L A N D A N D WA L E S

The experience of England and Wales, where we have data as far back as 1845, is useful to first show this broad pattern of transition in a single country. We then show that the mortality experience of this population mirrors historical trends in many neighboring European countries. Figures 44.1a–b present the historical transition in the SRM for England and Wales. In the first figure, figure 44.1a, we present the SRMs at each age between 1845 and 2005, noting the high SRMs around the young-adult ages in the two war years—1915 and 1945. Given significantly higher war casualties among men, it is difficult to discern changes in the SRM outside these abnormal spikes. Therefore, in the second figure, figure 44.1b, we truncate the war years’ SRM, allowing for finer variation in the non–war years to emerge more clearly. During the nineteenth century, these life tables estimate 1.2 male deaths for each female death during the first year of life. After that, the SRM declines with age as the male disadvantage in mortality diminishes, deviating from equality most significantly between the ages of fifteen and twenty and between twenty-five and thirty-five, reaching as high as 1.25 female deaths for each male death. The female advantage in mortality at birth erodes through early childhood and adulthood, leading to excess female mortality at these ages.11 Thereafter, the SRM rises, peaks around the fifty-to-fifty-five-year age group, and hovers between 1 and 1.2 male deaths for every female death. Through the century, this pattern in the age structure of mortality shifted fundamentally, with increasing SRMs giving rise to a reversal in excess female mortality. Between 1845 and 1905, age-specific female mortality between the ages of five and thirty-five declined faster than male mortality. These shifts in the SRM continued through the twentieth century. By 1925, excess female mortality had completely disappeared in England and Wales, and age-specific SRMs continued to rise, leading to a two-peaked age profile of SRM, with peaks between fifteen and twenty-five years and between fifty-five and seventy years by 1955. The SRM at the former age group (a peak of roughly three male deaths for each female death) was higher than that at the latter (a peak of roughly two deaths per female death). This pattern—of excess male mortality concentrated among young adults and at the older ages—persisted through the latter half of the century. Finally, between 1990 and 2010, age-specific SRMs declined significantly at the older ages, but the peak in SRM among young adults persisted. The fundamental feature of the mortality transition in England and Wales was thus a faster reduction in female relative to male mortality through the nineteenth and twentieth centuries. Excess female mortality observed in early childhood through to adulthood in the early nineteenth century declined consistently through the twentieth century, disappearing 7 90

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completely by the middle of the century. Through the latter half of the twentieth century, female mortality continued to decline faster than male mortality, and SRMs rose to produce a two-peaked profile, with excess male mortality concentrated among young adults and the elderly. More recently, age-specific SRMs declined somewhat at all ages (contrast, for instance, 1995 and 2005), but the “two-peaked” age profile persists to date. T H E D E C L I N E O F E XC E S S F E M A L E M O RTA L I T Y F R O M 1 8 0 0 T O 1950 IN MANY RICH COUNTRIES

Mortality data extracted from the Human Mortality Database (HMD) allow construction of a long series of age-specific mortality rates for twelve of today’s high-income countries, dating back to the 1800s. During the nineteenth century, the age profiles of the SRM looked remarkably similar across this set of countries, reflecting features that broadly resemble those described above for England and Wales. Figures 44.2a–d illustrate this for Belgium, France, and Sweden, in addition to England and Wales. For the first year of life, life tables estimate 1.2 male deaths for each female death in every country. After that, age-specific SRM declines with age and exhibits a double-trough pattern, with the first trough in SRM between the ages of ten and fifteen or between fifteen and twenty, depending on the country. The SRM then rises above 1 before falling again to produce a second trough between the ages of twenty-five and thirty and between thirty and thirty-five. Thereafter, the SRM rises, peaks in some instances around the fifty-to-fifty-five-year age group, and generally hovers between 1 and 1.2 male deaths for every female death. Thus, each of the twelve European countries for which long mortality series are available in the HMD exhibited excess female mortality through the 1800s and early 1900s, notably during early childhood12 and young adulthood (the reproductive years of peak fertility and just after). However, this excess female mortality was not a static feature of these mortality profiles; as with England and Wales, excess female mortality diminished over time in each country and completely disappeared between 1900 and 1930, with sex ratios of mortality rising above 1 at every age. (See figures 44.3a–b and 44.4a–b.)13 Within this group of twelve countries, consider the experience of Belgium, Denmark, France, Italy, Netherlands, and Spain. Each had sex ratios of mortality in childhood and young adulthood consistently lower than 1 for extended periods of time before the start of the nineteenth century. The SRMs at these ages then rose through the early 1900s, and excess female mortality disappeared by 1930. The remaining six countries or areas with time-series data representing a long period— England and Wales, Finland, Norway, Scotland, Sweden, and Switzerland—experienced fluctuation in excess female mortality, with SRMs fluctuating above and below 1 before 1900. Excess female mortality appeared and disappeared during the 1800s, always appearing at the childhood and adult years. Norway and Sweden were the only countries that did not exhibit significant levels of excess female mortality outside of childhood. As with the first set of countries, SRMs rose at every age through the 1900s, and between 1900 and 1930 excess female mortality had completely disappeared in these countries.

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figure 44.3b Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 10–14 year age group. The vertical axis represents sex ratio of mortality; the horizontal axis, year. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 10–14 year age group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with those in fig. 44.3a) zoom in on the mortality experience of older children/adolescents in high-income countries, and show how excess female mortality at these ages declined and gave way to excess male mortality.

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figure 44.4a Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 25–29 year age group. The vertical axis represents sex ratio of mortality; the horizontal axis, year. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 25–29 year age group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with those in figure 44.4b) highlight the mortality experience of adults in high-income countries, and show how excess female mortality at these ages declined and gave way to excess male mortality.

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figure 44.4b Historical sex ratios of mortality in 20 high-income countries, 1720–1950, in the 30–34 year age group. The vertical axis represents sex ratio of mortality; the horizontal axis, year. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 30–34 year age group between 1720 and 1950 in 20 high-income countries. SRM data are missing for early years in countries whose mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with those in fig. 44.4a) zoom in on the mortality experience of adults in high-income countries, and show how excess female mortality at these ages declined and gave way to excess male mortality.

15–20 years

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figure 44.5a Sex ratios of mortality in 21 high-income countries by age group during 1925–1950. The solid line represents no change in SRMs over time. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in 1950 against those in 1925, for young adults (age groups 15–20 and 20–25) and older adults (age groups 55–60 and 60–65) in 21 highincome countries. The solid line is the line of equality; if a data point falls on this line, the sex ratio of mortality in the corresponding country and age group did not change between 1925 and 1950. All data points fall above the line and indicate that sex ratios of mortality among both young and older adults increased across all countries in the sample during this period. Countries included are Australia, Austria, Belgium, Canada, Denmark, Finland, France, Iceland, Ireland, Italy, Japan, Luxembourg, Netherlands, New Zealand, Norway, Portugal, Spain, Sweden, Switzerland, the United Kingdom, and the United States.

For some advanced economies, the HMD series start during the twentieth century (1920 or later). This includes Australia, Austria, Canada, Japan, New Zealand, Portugal, and the United States. During this period of observation, sex-disaggregated mortality rates in these countries do not exhibit higher female mortality rates at the childhood ages. The same is true of mortality at the adult ages. The only exception is for Australia and Canada, both of which exhibit SRMs lower than 1 in the twenty-five to thirty-year and thirty–to thirty-five-year age groups, but once again, by 1950 each of these has risen above 1. Excess female mortality was thus a prominent feature of the historical mortality profiles of today’s high-income countries. Although it appeared and disappeared at somewhat different times across these countries, the excess mortality among females, while it lasted, was most concentrated during early childhood and the adult years, just past the age of peak fertility. At older ages, a relative male disadvantage was always present, dating back to data from 1820 in Sweden.

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figure 44.5b Sex ratios of mortality in 21 high-income countries by age group during 1950–1975. The solid line represents no change in SRMs over time. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in 1975 against those in 1950, for young adults (age groups 15–20 and 20–25) and older adults (age groups 55–60 and 60–65) in 21 highincome countries. The solid line is the line of equality; if a data point falls on this line, the sex ratio of mortality in the corresponding country and age group did not change between 1950 and 1975. All data points fall above the line (except for Iceland) and indicate that sex ratios of mortality among both young and older adults increased across all countries in the sample during this period. Countries included are Australia, Austria, Belgium, Canada, Denmark, Finland, France, Iceland, Ireland, Italy, Japan, Luxembourg, Netherlands, New Zealand, Norway, Portugal, Spain, Sweden, Switzerland, the United Kingdom, and the United States.

T H E 1950 S A N D L AT E R : A G R O W I N G M A L E D I S A D VA N TA G E

During the twentieth century, any female disadvantage in mortality further declined in the group of high-income countries, and age-specific SRMs continued to rise. Figures 44.2a–d again show this for Belgium, France, England and Wales, and Sweden. By 1950, excess female mortality not only disappeared in these countries but gave way to excess male mortality at all ages. Moreover, between 1950 and 1975, SRMs developed a persistent two-peaked age profile across the four countries, with the SRM peaking at between fifteen and twenty-five years and then again between fifty-five and seventy years. The SRM at the former age group (a peak of roughly 3 male deaths for each female death) was always higher than that at the latter (a peak of roughly 2 deaths per female death). This doublepeak profile was characteristic of these four countries, but it was also experienced at this time by each of the countries in the high-income group examined in the HMD. Figures 44.5a–b examine further the age-specific SRMs at those ages where the SRM

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usually peaks—between fifteen and twenty-five and between fifty-five and sixty-five. In figure 44.5a, we plot on the horizontal axis the SRM in 1925 and on the vertical the SRM in 1950 and depict each of the twenty-one countries with a dot. To document the nature of the evolution in the SRM, we show in every figure the line of equality; any country on this line has an SRM that is the same (in the relevant age group) in 1925 and 1950. Countries that lie above the line have a higher SRM in that age group in 1950 than in 1925. As is clear, every country in our sample saw a rise in the SRM at the two age groups identified above. (They are all above the line of equality.) Between the ages of fifteen and twenty-five, the age-specific SRM in every country increased between 1925 and 1950, and rose further between 1950 and 1975 (see figure 44.5b). The same was true of the fiftyfive-to-sixty-five-year age groups; the only exception was Iceland (marked in the figure), where the SRM in the twenty-to-twenty-five-year age group rose to 8 in the middle of the century before declining to 2.

1 9 9 0 –2 0 1 2 : A R E L AT I V E I M P R O V E M E N T I N M A L E M O RTA L I T Y

Between 1990 and 2010, the picture started to change. While the two-peaked age profile, indicating a concentration of excess male mortality at the young-adult and old ages, proved to be stubborn and persisted in practically every country between 1990 and 2010, age-specific SRM did decline in most countries. This relatively recent decline occurred differently across high-income countries, in terms of both its timing and the age groups at which it occurred. First, declines in age-specific SRMs, when they occurred, were greater at earlier ages (fifteen to twenty-five and up to thirty) than at older ages (fifty to seventy). Second, declines in age-specific SRM occurred differently across countries. Figures 44.6a–b show the variety of experiences, again documenting the SRM in 1990 and 2007–11 at the age groups with the highest SRMs. (As before, the line in each figure shows where countries would fall if there was no change.) The age-specific SRM at age groups fifteen to twenty and twenty to twenty-five declined significantly in most high-income countries. Ireland was the notable exception, where the SRM increased at the young-adult ages. Declines were particularly large in Portugal (from a peak of 4.4 in 2000 to 2.6 in 2009), Spain (from 3.5 in 1990 to 2.5 in 2009), and Sweden (from 3 in 2000 to 2.5 in 2011). In Belgium, Finland, Italy, and Switzerland, the SRM remained more or less unchanged. Declines in SRM and a relative improvement in male mortality were also evident among older adults during this period. Surprisingly, Spain and Portugal, which had experienced declines in SRM at the younger ages, were exceptions, with small increases in SRM at the older ages. Iceland also experienced a significant increase in SRM in the fifty-five-to-fifty-nine-year age group, and Japan in the sixty-to-sixty-four-year age group. Outside these countries, the magnitude of declines varied. Countries with relatively larger declines were the western European and Nordic countries (France, Austria, Belgium, Switzerland, Luxembourg, Norway, Sweden, Finland, and the Netherlands).

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figure 44.6a–b Sex ratios of mortality in 21 high-income countries between 1990 and 2007–11, by age group. The solid line represents no change in SRMs over time. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of SRM in 2007–11 (the most recent year for which data were available in the HMD, and it varied by country) against those in 1990, for young adults (age groups 15–20 and 20–25) and older adults (age groups 55–60 and 60–65) in 21 high-income countries. The solid line is the line of equality; if a data point falls on this line, the sex ratio of mortality in the corresponding country and age group did not change between 1990 and the most recent year for which data were available. Countries included are Australia, Austria, Belgium, Canada, Denmark, Finland, France, Iceland, Ireland, Italy, Japan, Luxembourg, Netherlands, New Zealand, Norway, Portugal, Spain, Sweden, Switzerland, the United Kingdom, and the United States. SRM among young and older adults falls in most countries. Ireland was an exception, since SRMs rose there for young adults, as they did in Spain, Portugal, Iceland, and Japan among older adults.

Notably, these countries generally had higher SRMs in 1990 than the Anglophone countries. In summary, the SRM continued to rise through the twentieth century and into the twenty-first century, exhibiting a concentration of excess male mortality at the youngadult ages and again in old age. In the last two decades, this relative male disadvantage in mortality has declined, but it still remains significant across the high-income world.

WHY?

Considerable debate surrounds the proximate determinants of the historical evolution of SRMs in high-income countries. To contextualize these debates, it may be useful to think of the SRM as arising from the interaction between biology and social determinants of mortality. The key issue that scholars have grappled with is whether changes in the institutional environment that could affect mortality rates through better medical care and lower rates of infectious diseases are the primary drivers of changes in the SRM, or whether such institutional changes can work effectively only together with changes in the position of women in society. Evidence on both sides of the debate is largely circumstantial. For instance, Dominique Tabutin (1978) hypothesizes that the social status of women in nineteenth-century Europe placed women in a role secondary to that of men and in a position of dependence. The social condition to which this gave rise, whether in living conditions, work environment, hygiene, or prostitution, could very well have led to the excess female mortality observed in Europe at the time. This idea—that fewer economic opportunities, and therefore lower status for women, led to higher female mortality—is echoed in a number of studies from nineteenth-century Massachusetts (Ginsberg and Swedlund 1986), Ireland (Kennedy 1973), and rural Cornwall (Johansson 1977). Each of these studies starts with the observation that excess female mortality was most pronounced in the rural and agrarian sectors of the economy. The authors then argue that these were the precise regions and sectors where women had fewer opportunities to contribute to the family income, and therefore lower status in family and community. With urbanization and industrialization, which opened up economic opportunities for women, females began to lose their mortality disadvantage. The fundamental assumption—that women’s status was lower in rural and agrarian societies and this in turn led to higher mortality—is debated, even among those who hold female empowerment as one of the main causes of higher mortality. For instance, Jane Humphries (1991) argues that predominantly agricultural counties in nineteenth-century England were hostile to female life chances not because they traditionally afforded few productive opportunities to women, but rather because the transformation of agriculture, in which female employment and self-employment were almost eliminated, led to conditions where women, as weakened and ill-fed dependents, were disproportionately susceptible to epidemic and respiratory disease. At the same time,

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while female participation in wage labor was associated with an environment supportive of female life, participation in wage labor in trades and industries was not always life sustaining: factors such as competition and deskilling led to exploitative conditions, which were in turn harmful for women when they led to labor demands for which women were biologically and culturally unfitted, especially in combination with the heavy duties of nineteenth-century motherhood and housework. These arguments, each based on a single country, are harder to reconcile with the remarkable congruence in the timing of female mortality declines across various countries. For instance, excess female mortality in infancy and early childhood disappeared uniformly across many rich countries between 1900 and 1920. One reason may be that each of these countries saw an improvement in women’s status precisely during this time. Another suggestion is that these declines coincided with large investments in public health—notably, clean water and sanitation, along with outreach to improve domestic hygiene practices. Epidemiological changes caused by these public-health investments explain both declining infant mortality and the disappearance of excess female mortality in infancy and early childhood (World Bank 2011). Between the early 1900s and 1930, the share of infectious diseases as a cause of death declined, increasing the share of perinatal and congenital factors. Although girls were (and are) more robust than boys for both infectious diseases and perinatal conditions, they are even more robust than boys for perinatal conditions relative to infectious diseases. Boys always had a disadvantage in mortality, and as infectious diseases declined, their disadvantage increased (Drevenstedt et al. 2008). In addition, declines in maternal mortality ratios, in the context of declining fertility, may have been an important contributing factor underlying declines in excess female mortality in adulthood during the first half of the twentieth century. (Albanesi 2011 provides a documentation of the trends in maternal mortality using new digitized data from twenty-five advanced and emerging economies between 1900 and 2000.) In fact, trends in excess female mortality followed closely those in maternal mortality ratios (World Bank 2011). Between 1930 and 1960, the maternal mortality ratio—the risk of death for every birth—fell significantly in developed countries. Excess female mortality in adulthood, which had remained fairly high until 1930, declined to zero between 1930 and 1960. The late declines were precisely for those countries—Italy, Japan, and Portugal— where declines in maternal mortality occurred last. The suggestion therefore is that the rising SRM through the earlier half of the twentieth century was in part a result of the declining share of infectious disease in the overall burden of death, with mortality improvements taking place faster for girls than for boys, and in part a result of sharp declines in maternal mortality, which allowed adult mortality to drop faster for women than for men. By 1960, maternal mortality ratios had reached present-day levels across the OECD countries, while chronic disease had started to replace infectious disease as the leading cause of death. Ingrid Waldron (1993) investigates this using cause-of-death data for

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twenty-two countries and for three regions of the United Kingdom between 1979 and 1987. She argues that the SRM continued to increase among young adults aged twentyfive to thirty-four during the 1980s in part due to males’ unfavorable suicide trends, relating these in turn to recent changes in social roles and mores. Another cause of increasing sex ratios of mortality for these young adults was the spread of a major new infectious disease, AIDS, which in these countries affected males far more than females for both behavioral and biological reasons. The cause-of-death data yield a somewhat more complex story for older adults, among whom trends in SRM between 1979 and 1987 varied in different regions. Among older middle-aged adults in the Anglophone and northern European countries, SRMs decreased recently, due in part to decreasing sex differences in lung cancer mortality, reflecting decreasing sex differences in smoking in previous decades. In addition, ischemic heart disease mortality decreased for both men and women, contributing to greater decreases in total mortality for men, since ischemic heart disease constitutes a greater proportion of total mortality for men. The trends in ischemic heart disease mortality reflect the effects of improvements in health-related behavior and medical care interacting with males’ inherently greater vulnerability to ischemic heart disease mortality. We note that the relative role of discrimination against women and of better institutions is important for low-income countries today. One model that could nest both hypotheses is that in which discrimination becomes important precisely in contexts where medical infrastructure and knowledge are poor. In the nineteenth century, there were no notable successes in medicine, and it is only around the late nineteenth century that the germ theory of disease started emerging as a dominant paradigm of disease propagation. In such contexts, it is very likely that poor nutrition among women, greater susceptibility to illnesses, and ineffective medical technology contributed to higher female mortality in regions where discrimination was higher. This does not necessarily rule out the complementary hypothesis that even when there is discrimination, better health institutions can help decrease female (and male) mortality. For instance, studies of overall mortality in the United States show persistent declines with the arrival of clean water in U.S. municipalities (Cutler and Miller 2005). If so, a high burden of infectious disease in countries where poor public-health systems do not provide clean water, sanitation, waste disposal, and drainage may be part of the reason for higher relative female mortality risks in early childhood.14 Clearly, this debate matters. If we think that excess female mortality will respond only to improvements in women’s status in society, this is where we need to direct our efforts. Alternately, if we believe that better health institutions will help decrease mortality for both men and women (and note that by the mid–nineteenth century, males were at a mortality disadvantage at all ages) and may be sufficient even in regions with significant discrimination against women, this offers an alternate set of policies for governments and the global health community to follow.

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Key to this question is whether the trends in male and female mortality that persist across OECD countries generalize to other parts of the world as well. In particular, as mortality rates have fallen in large parts of the world and in a large number of low- and middle-income countries, what have gender differences in mortality looked like? As we show in the next section, the data required to address this question are not sufficiently reliable. We are therefore left at the end with a set of hypotheses, but little in the nature of reliable data to guide us forward. We conclude with a brief description of the precise problems in these data.

T O D AY ’ S L O W- I N C O M E C O U N T R I E S : T H E U N C E RTA I N T Y O F T H E D ATA

The vast literature documenting a “female deficit” in the low-income world, particularly in southern and eastern Asia, has primarily relied upon the ratio of men to women in these populations to infer the existence of a female disadvantage in mortality. Yet, as Siwan Anderson and Debraj Ray (2010) point out, such comparisons can confound historical differences with current differentials: the census data offer a measure of population stocks that have been subject to flow mortality rates over a (potentially) long period of time. Studies comparing mortality rates among men and women at different ages are rare. Dominique Tabutin (1992) undertakes this exercise for four countries in northern Africa (Algeria, Egypt, Tunisia, and Morocco) over the period from 1965 to the late 1980s. He compiles mortality data for these countries from a variety of sources that include civil registration systems, surveys, and official sources like the UN, and documents the existence of excess female mortality in northern Africa at the beginning of this period, and its subsequent decline and concentration in the under-five age group. M. A. el-Badry (1969) also compares gender-disaggregated age-specific mortality rates using a combination of sources, and reports excess female mortality in India, what was then Ceylon (now Sri Lanka), and Pakistan during the 1950s and 1960s, and documents declines over time in Sri Lanka. Needless to say, studies like these are rare and hard to conduct due to lack of data: unlike the group of high-income countries today for which uninterrupted genderdisaggregated mortality estimates are available as far back as the 1700s from registration systems, vital statistics, and census data, mortality data from other parts of the world are sparse, and where they exist, they are available for recent decades only. The primary data source on mortality that claims to allow a comparison of mortality rates across countries and years is data from the WHO, which has constructed life tables for its member states for the years 1990, 2000, and 2009/2011. In 2012, when the data for this chapter were first accessed, age-specific mortality rates for males and females were available through WHO life tables constructed for the years

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China 2.5 2.3

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figure 44.7a–c Sex ratios of mortality in China, using both the older release of the data from 2012 and the new release from 2013, for the years 1990 (a), 2000 (b), and 2009 and 2011 (c). source: Authors’ calculations based on data from the World Health Organization 2012, and the Global Health Observatory, World Health Organization, 2013. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age for China. The data for 1990, 2000, and 2009 were accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised the 1990 and 2000 data and published new data for 2011. These were accessed in June 2013 and are presented here as “new data.” Note the strikingly different patterns of gender differences in mortality between the old and the revised data. In the new data, there is no instance of excess female mortality at any age across the entire period of observation. Also, the two-peaked profile of SRM—similar to that observed in high-income countries—with the male disadvantage concentrated at the young adult and older ages has disappeared.

1990, 2000, and 2009. In the 2013 release of the data, estimates for the years 1990 and 2000 were revised, and new estimates were published for the year 2011. For some countries, the revised 2013 estimates differed significantly from those published in 2012, with significant changes in sex-specific mortality risks for the years 1990 and 2000. As a result of these changes, trends in male and female mortality rates between the years 1990 and 2000 estimated using the 2012 version of the data were different for these countries from those estimated using the 2013 data. These differences in turn implied that changes in sex differences in mortality rates over time look significantly different depending on the version of data used. Figures 44.7a–c present sex ratios of mortality in China, using the 2012 and 2013 releases of the mortality data. The pattern of gender differences in mortality is strikingly different in the two versions of the data. The older data exhibit excess female mortality at ages ten and below in 1990, which remains only during the first year of life by 2009. The profile at all ages above this closely resembles that observed in modern times in the

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high-income world—rising sex ratios of mortality in the past two decades, with excess male mortality concentrated in adolescence and again in the older ages. In the newly released data, however, mortality risks are much more “equitable,” especially at the youngest ages. There is no excess female mortality at any age during the entire period of observation. The age profile of sex ratios of mortality is fairly flat, with no concentration of relative male disadvantage at specific ages comparable to that observed in the older data. Age-specific SRM hovers between 1 and 1.5, generally increasing between 1990 and 2000, and declining somewhat by 2011. For India, the differences between the 2012 and 2013 versions of the data are not as

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figure 44.8a–c Sex ratios of mortality in India, using both the older release of the data from 2012 and the new release from 2013 for the years 1990 (a), 2000 (b), and 2009 and 2011 (c). source: Authors’ calculations based on data from the World Health Organization 2012 and the Global Health Observatory, World Health Organization, 2013. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age for India. The data for 1990, 2000, and 2009 were accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised the 1990 and 2000 data and published new data for 2011. These were accessed in June 2013 and are presented here as “new data.” In comparison to China, the differences between the old and revised data are much smaller in India. The age group five years and under is the only exception: it exhibited a higher magnitude of female disadvantage in the old version of the data.

dramatic. (See figures 44.8a–c.) There is little or no difference between the revised mortality estimates for the years 1990 and 2000. The only exception is risks under the age of five. The older version of the data exhibits a significantly higher level of excess female mortality in 1990 and 2000. Both the revised estimates and earlier data tell a similar story of a relative female disadvantage in mortality up to the age of thirty, which significantly reduced in the last decade, and steadily rising male-biased sex ratios of mortality at all higher ages. In the 2012 data release, the sex structure of mortality risks in 1990 in Tanzania closely resembles that observed in the higher-income European countries in the late 1800s. Figures 44.9a–c illustrate this: the sex mortality ratio after the first year of life up to the twenty-five-to-thirty-year age group is significantly lower than 1, indicating excess female mortality. By 2000, the age profile of sex ratios of mortality has shifted upward, and excess female mortality is visible only in early childhood (one to four years) and again between the ages of twenty and thirty-five. By 2009, excess female mortality has disappeared at all ages except in the one-to-four-year age group, and the sex structure of mortality closely

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resembles that observed in today’s high-income countries—that is, a double-peaked profile, with excess male mortality concentrated in adolescence and the older ages. In the 2013 release, the picture looks very different. For one, the revised mortality estimates for year 1990 display no excess female mortality at any age. By 2000, sex ratios of mortality at ages under fifty years have fallen, and excess female mortality appears between the ages of twenty and thirty-five. In 2011, the age-specific SRMs rise somewhat once again in this age group; however, some excess female mortality remains. The older ages exhibit a concentration of excess male mortality, with the SRM peaking at the fiftyfive-to-fifty-nine-year age group; however, there is no consistent trend, since the SRM in old age rises between 1990 and 2000 and then falls between 2000 and 2011.

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figure 44.9a–c Sex ratios of mortality in Tanzania, using both the older release of the data from 2012 and the new release from 2013 for the years 1990 (a), 2000 (b), and 2009 and 2011 (c). source: Authors’ calculations based on data from the World Health Organization 2012 and the Global Health Observatory, World Health Organization, 2013. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) against age for Tanzania. The data for 1990, 2000, and 2009 were accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised the 1990 and 2000 data and published new data for 2011. These were accessed in June 2013 and are presented here as “new data.” In the revised data, there is no excess female mortality in Tanzania in 1990 at any age, but it is present in early adulthood by the year 2000 in both releases of the data.

E X P L A N AT I O N S — H O W T H E U N D E R LY I N G M A L E A N D F E M A L E M O RTA L I T Y E S T I M AT E S C H A N G E D

A comparison of mortality risks among males and females explains why the sex structure of mortality is strikingly different in the new and old versions of the WHO data. Consider the case of mortality estimates for the year 1990 for three countries: China, India, and Tanzania.15 In the old data for China, male mortality under the age of five in 1990 is somewhat lower than female mortality at the same age. (See figures 44.10a–d.) Hence we see excess female mortality at this age. In the revised data, male mortality under the age of five is significantly higher than that in the earlier data, while female mortality is lower—indeed, lower not just than its value in the 2012 data, but even lower than the revised level of male mortality. As a result, we don’t see any excess female mortality in childhood. It is worth highlighting that the precision required to construct accurate SRMs is very high. Because mortality rates are small numbers, and become very small above the age of five, the SRM is the ratio of two very small numbers. Small changes in either the male or the female mortality rates could lead to large changes in the SRM, depending on the

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direction of the change. For instance, in the Chinese case as seen earlier, at the older ages (figures 44.7a–c and 44.10c–d), the revised mortality risks do not show the two-peaked age profile of sex ratios of mortality visible in the old data. In the old data, the first peak in SRM was centered at twenty to twenty-five years. Why do we see this? In the new data (figures 44.10c–d), the male mortality rates in and around this age group (0.00124) are significantly lower than those in the old data (0.00179), while female mortality risks in this age group were revised downward by a smaller amount (0.00100, versus 0.00114 in the old). The new SRM (1.24) is thus significantly lower than that observed in the old data (1.57). The second peak in the SRM, centered at sixty to sixty-five years, also disappears because the revised estimates for male mortality in this age range are somewhat lower (and for female mortality, slightly higher) than the earlier estimates.

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figure 44.10a–d Age-specific mortality rates in China, 1990, using both the older release of the data from 2012 and the new release from 2013 for males (a) and females (b) aged 0–44, and for males (c) and females (d) aged 45–100. source: World Health Organization 2012, and the Global Health Observatory, World Health Organization, 2013. notes: Plots of mortality rates among younger (0–44 years) and older (45 years and above) males and females in China against age. The data for year 1990 were accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised these data. These were accessed in June 2013 and are presented here as “new data.” The 2013 release of the data revised childhood male mortality in 1990 upward and female mortality downward, so that excess female mortality is no longer present in this age group. At the older ages (consider age groups 20–24 and 60–64), both male and female mortality were revised downward, but since female mortality was revised by a smaller amount, the SRM was significantly lower, and the two-peaked SRM profile observed in the old data flattened out considerably in the new data.

For India, the differences in the old and revised estimates for 1990 were mainly visible at age five and under. (See figures 44.11a–b.) Focus on the age group one to four years, since this is the age group with the largest deviation. In the 2013 release of the data, male mortality is higher than its value previously estimated. Female mortality, on the other hand, is lower. This results in a higher value of the sex mortality ratio at this age in the new release of the data.

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India, 1990 .1 .09

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figure 44.11a–b Age-specific mortality rates in India, 1990, using both the older release of the data from 2012 and the new release from 2013 for males (a) and females (b) aged 0–74. source: World Health Organization 2012, and the Global Health Observatory, World Health Organization, 2013. notes: Plots of mortality rates among males and females in India against age. The data for year 1990 were accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised these data. These were accessed in June 2013 and are presented here as “new data.” The 2013 release of the data revised the 1990 childhood male mortality upward and female mortality downward, so that SRM in this age group is higher in the new data.

For Tanzania, the most dramatic difference is that the data in the 2012 release exhibited significant levels of excess female mortality after the first year of life up to the age of thirty, while in the 2013 release there is no excess female mortality through the life course. Different things happened at different ages. (See figures 44.12a–b.) In the oneto-four-year age group, female mortality was revised downward (0.01940 to 0.01694)

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Tanzania, 1990 .12

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figure 44.12a–b Age-specific mortality rates in Tanzania, 1990, using both the older release of the data from 2012 and the new release from 2013 for males (a) and females (b) aged 0–34. source: World Health Organization 2012 and the Global Health Observatory, World Health Organization, 2013. notes: Plots of mortality rates among males and females in Tanzania against age. The data for year 1990 were accessed in October 2012 and are presented here as “old data.” The WHO subsequently revised these data. These were accessed in June 2013 and are presented here as “new data.” In the new data, the 1990 childhood male mortality was revised upward while female mortality was revised downward. At higher ages, both male and female mortality were revised upward, but the revision for male mortality was larger. The combined result was a higher SRM (and elimination of excess female mortality) at these ages in the new data for 1990.

while male mortality was revised upward (0.01697 to 0.01837); the changes were big enough to reverse the disadvantage and raise the sex mortality ratio above 1. At age five and above, both male and female mortality were revised upward: for example, in the fifteen-to-nineteen-year age group, male mortality was revised from 0.00173 to 0.00429, and 0.00252 to 0.00393 for females. Since the revision in male mortality was larger than that in female mortality, the change was once again large enough to flip the disadvantage to males, with the SRM rising from 0.69 to 1.09.

W H AT T H E S E C H A N G E S M E A N F O R T H E A N A LYS I S O F G E N D E R D I F F E R E N C E S I N M O RTA L I T Y I N L O W E R - I N C O M E C O U N T R I E S

A comparison of trends in sex ratios of mortality in lower-income countries using the older version of the WHO data with those using the new version yields strikingly different results. How large the differences are depends on the country and on the age group in question. These differences arise from significant revisions of estimates of mortality rates among males and females; and for the three countries examined here—China, India, and Tanzania—the revisions are sometimes so large that they essentially reverse the direction of the mortality disadvantage at some ages. Given these large swings in the direction of the gender bias from one release of the mortality data to the next, without a very close, critical examination of the methods

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used to arrive at the mortality estimates for each country, it is difficult to say anything with certainty. Our suspicion is that without reliable mortality data from registration systems and vital statistics, at this point it is simply not feasible to identify trends in gender differences in low-income countries with any acceptable level of certainty or precision.

CONCLUSION

In today’s rich countries, relative mortality for men and women evolved in remarkably similar ways. A historical disadvantage for women till the age of forty and a historical advantage thereafter gave way to a female advantage in mortality for all ages by the early twentieth century. The record of the twentieth century shows increasing female advantages and the arrival of a two-peaked distribution of the sex ratio of mortality. It is only around 1990 that we see an incipient change in favor of men, with a slow decline in the peaks in some countries. Like discussions around the overall mortality transition, the proximate determinants for this evolutionary pattern likely differed over time. It is possible that the early female disadvantage, at a time when medical technology was largely ineffective, reflected the low status of women in society. Yet, with the arrival of the germ theory of disease and large public-health campaigns around clean water and sanitation at the turn of the century, a reduction in infectious diseases could have impacted female more than male mortality—even in societies where discrimination against women continued. These debates are important for low-income countries today, and studies based on a small number of countries from various data sources do suggest that a similar evolution is under way in these countries. If so, it is the dramatic failure to provide better publichealth measures that could be driving the pattern of mortality rates across men and women. Examining this hypothesis in a large number of countries runs into severe data issues: despite attempts by the World Health Organization to compile mortality data by age and sex, there are large uncertainties. Depending on which version of these data is used, different stories can be told. It is arguably prudent, as this stage, to focus our efforts on improving the quality of vital statistics in low-income countries rather than on analyzing data that are inherently unreliable. N OT E S

This chapter draws on previous work by the authors for the 2012 World Development Report. We thank Clara Han, Veena Das, and Monica Das Gupta for comments and conversations. It was funded, in part, through grants from the KCP trust funds at the World Bank. The findings, interpretations, and conclusions expressed in this paper are entirely those of the authors. They do not necessarily reflect the view of the World Bank, its executive directors, or the countries they represent. 1. Data accessed prior to March 2013—and used in the 2012 World Development Report (World Bank 2011)—suggest that in high-HIV-prevalence countries like Botswana, Kenya, and Uganda, between 1990 and 2000, the sex ratio of mortality (henceforth SRM) decreased sharply

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at the peak of the epidemic (female mortality rates rose much faster than male mortality rates) but that by 2010, the effects of more widely available treatments were seen in mortality rates, and the SRM started to increase again. South Africa, by contrast, where the availability of muchneeded treatment increased only later, showed a slower decline over the same period. 2. In these countries, the SRM through the reproductive years has risen sharply since the 1990s to a level comparable to that observed in the European countries only during the two World Wars. 3. In countries like China and India, in some geographic regions, there are 1.2 boys born for every girl (relative to a historical norm of 1.05). To the extent that excess female mortality takes place as infanticide, it will be reflected not in mortality-rate estimates (based on reported deaths), but in the sex ratio at birth. Although China and India account, by far, for the largest number of “missing girls at birth,” the practice has now spread to the Caucasus, where in countries like Azerbaijan the ratios look very similar to those in India. See World Bank 2011 for a review of the evidence. 4. A life table is a listing of the number of survivors at different ages (up to the highest age attained) in a hypothetical cohort of individuals subject from time of birth to a particular set of age-specific mortality rates. The rates are usually those observed in a given population during a particular period of time. 5. Estimates of the population exposed to the risk of death during some age interval over a given period of time are based on annual (January 1) population estimates, with a small correction that reflects the timing of deaths within the interval. 6. Death rates are always a ratio of the death count for a given age-time interval divided by an estimate of the exposure to risk in the same interval. 7. That is, overreporting of ages ending in “0” or “5.” 8. Age misreporting is a well-documented problem and occurs for a variety of reasons. In settings with poor vital registration systems and records, respondents’ knowledge of age may be poor. Age heaping occurs when exaggerated numbers of persons are reported with ages ending in the digits 0 or 5. Heaping in certain age groups has been linked to social preferences. For example, in African populations there is a tendency to exaggerate the ages of girls aged ten to fourteen if they have passed puberty and to understate the ages of girls who have not reached puberty. Ages of older persons may sometimes be exaggerated due to the idea that advanced age is a sign of personal or social distinction. See Ewbank 1981; Preston and Elo 1999. 9. For example, a processing error whereby “3,800” became “38,000” in a published statistical table would be obvious in most cases, and it would be corrected. 10. For these countries, disaster/conflict-free mortality rates for the reference years are first interpolated from available life tables, and then estimates of the number of disaster/ conflict-related deaths are added to the interpolated rates to compute total death rates for all causes by year. A similar strategy is used for estimating mortality rates in countries with a high prevalence of HIV/AIDS. 11. Henceforth, we refer to all instances of a sex ratio of mortality under 1 as excess female mortality and an SRM of greater than 1 as excess male mortality. 12. At ages younger than five—that is, less than age one and between ages one and four— the mortality profiles of these countries exhibit excess male mortality over the entire period of observation. See figs. 44.13a and 44.13b.

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figure 44.13a Historical sex ratios of mortality in 22 high-income countries, 1720–1950, in the 0–1 year age group. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 0–1 year age group between 1720 and 1950 in 22 high-income countries. SRM data are missing for early years in countries whose mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with those in figure 44.13b) zoom in on the mortality experience of infants and young children in high-income countries, and show how at these ages mortality profiles of these countries always exhibit a male disadvantage in mortality, unlike at older ages, where excess female mortality persisted for a long time before giving way to excess male mortality.

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figure 44.13b Historical sex ratios of mortality in 22 high-income countries, 1720–1950, in the 1–4 year age group. source: Human Mortality Database 2012, Max Planck Institute for Demographic Research, and University of California, Berkeley. notes: Plots of sex ratios of mortality (male mortality rate divided by the female mortality rate) in the 1–4 year age group between 1720 and 1950 in 22 high-income countries. SRM data are missing for early years in countries whose mortality data series start later than 1720. Sex mortality ratios during the two World Wars are suppressed. These plots (along with those in fig. 44.13a) zoom in on the mortality experience of infants and young children in high-income countries and show how at these ages mortality profiles of these countries always exhibit a male disadvantage in mortality, unlike at older ages, where excess female mortality persisted for a long time before giving way to excess male mortality.

13. Note that figures 44.3a–b and 44.4a–b suppress data points for years corresponding to the two World Wars, as well as the 1918 influenza pandemic. The sex ratio of mortality spikes for the former (the wars took a disproportionate toll on males), and exhibits a large dip for the latter (because the pandemic disproportionately took at a toll on females). 14. The 2012 World Development Report uses the WHO data and cites the examples of Bangladesh, China, and Vietnam, which have managed to reduce overall infant mortality through clean water and better sanitation, and have also reduced excess female mortality in infancy and early childhood. But in much of western Africa, there has been less focus on clean water and sanitation: between 1990 and 2005, the fraction of urban households with piped water actually declined from 50 percent to 39 percent in thirty-two African countries. According to the WHO data, countries like Burkina Faso and Nigeria have seen a much slower decline in early-childhood excess female mortality. 15. Similar explanations underlie the differences observed for the year 2000, and thus they are not described here.

REFERENCES

Albanesi, Stefania. 2011. “Maternal Health and Fertility: An International Perspective.” Manuscript. Anderson, Siwan, and Debraj Ray. 2010. “Missing Women: Age and Disease.” Review of Economic Studies 77:1262–1300. el-Badry, M. A. 1969. “Higher Female than Male Mortality in Some Countries of South Asia: A Digest.” Journal of the American Statistical Association 64 (328): 1234–44.Cutler, David, Angus Deaton, and Adriana Lleras-Muney. 2006. “The Determinants of Mortality.” Journal of Economic Perspectives 20 (3): 97–120. Cutler, David M., and Grant Miller. 2005. “The Role of Public Health Improvements in Health Advances: The Twentieth-Century United States.” Demography 42 (1): 1–22. Drevenstedt, Greg L., Eileen M. Crimmins, Sarinnapha Vasunilashorn, and Caleb E. Finch. 2008. “The Rise and Fall of Excess Male Infant Mortality.” PNAS 105 (13): 5016–21. Ewbank, Douglas C. 1981. Age Misreporting and Age-Selective Underenumeration: Sources Patterns and Consequences for Demographic Analysis. Committee on Population and Demography, Report no. 4. Washington: National Academy Press. http://pdf.usaid.gov/pdf_docs/PNAAJ514.pdf. Farr, W. 1881. Vital Statistics: A Memorial Volume of Selections from the Reports and the Writings of William Farr. London: Offices of the Sanitary Institute. Ginsberg, C., and A. Swedlund. 1986. “Sex Specific Mortality and Economic Opportunity: Massachusetts, 1860–1899.” Continuity and Change 1 (3): 415–45. Human Mortality Database. University of California, Berkeley (USA), and Max Planck Institute for Demographic Research (Germany). Accessed September 15. www.mortality.org and www.humanmortality.de. Humphries, Jane. 1991. “ ‘Bread and a Pennyworth of Treacle’: Excess Female Mortality in England in the 1840s.” Cambridge Journal of Economics 5:451–73. Johansson, S. R. 1977. “Sex and Death in Victorian England: An Examination of Age-and SexSpecific Death Rates, 1840–1910.” In A Widening Sphere: Changing Roles of Victorian Women, edited by M. Vicinus, 163–81. Bloomington: Indiana University Press.

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Kennedy, R. E. 1973. The Irish: Emigration, Marriage and Fertility. Berkeley: University of California Press. Preston, Samuel H. and Irma T. Elo. 1999. “Effects of Age Misreporting on Mortality Estimates at Older Ages.” Population Studies 53 (2): 165–77. Sen, A. 1990. “More than 100 Million Women Are Missing.” New York Review of Books, December 20. http://www.nybooks.com/articles/archives/1990/dec/20/more-than-100-millionwomen-are-missing/. ———. 1992. “Missing Women.” British Medical Journal 304:587–88. Stolnitz, George J. 1955. “A Century of International Mortality Trends: I.” Population Studies 9 (1): 24–55. Tabutin, Dominique. 1978. “La surmortalité féminine en Europe avant 1940.” Population (French edition) 33 (1): 121–48. ———. 1992. “Excess Female Mortality in Northern Africa since 1965: A Description.” Population: An English Section 4:187–207. Waldron, Ingrid. 1993. “Recent Trends in Sex Mortality Ratios for Adults in Developed Countries.” Social Science and Medicine 26 (4): 451–62. World Bank. 2011. World Development Report: Gender Equality and Development. Washington.

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CONTRIBUTORS

V I N C A N N E A D A M S is Professor of Medical Anthropology at the University of California, San Francisco. She is the author most recently of Markets of Sorrow, Labors of Faith: New Orleans in the Wake of Katrina (2013) and a coeditor of Medicine between Science and Religion: Explorations on Tibetan Grounds (2010). RABIA ALI is Economist with the World Bank’s Education Global Practice, East Asia and Pacific Region. A N N E A L L I S O N is Robert O. Keohane Professor of Anthropology at Duke University. She is the author of Precarious Japan (2013) and Millennial Monsters: Japanese Toys and the Global Imagination (2006). H AY D E R A L - M O H A M M A D is Assistant Professor of Anthropology at University of Wisconsin, Madison. He has conducted extensive research on life in postinvasion Iraq.

is Distinguished Professor of Anthropology at the City University of New York. He is the author of On Suicide Bombing (2009), Formations of the Secular: Christianity, Islam, Modernity (2003), and Genealogies of Religion: Discipline and Reasons of Power in Christianity and Islam (1993). TALAL ASAD

A D I T YA B H A R A D WA J is Research Professor of Anthropology and Sociology of Development at the Graduate Institute of Geneva. He is the author of Conceptions: Infertility and Procreative Modernity in India (2014) and a coauthor of Local Cells, Global Science: The Proliferation of Stem Cell Technologies in India (2009)

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J O Ã O B I E H L is Susan Dod Brown Professor of Anthropology and Woodrow Wilson School Faculty Associate at Princeton University. He is the author of Will to Live: AIDS Therapies and the Politics of Survival (2007) and Vita: Life in a Zone of Social Abandonment (2005), and a coeditor of When People Come First: Critical Studies in Global Health (2013).

is Professor of Sociology at the University of Delhi. She is the author most recently of Speaking with Pictures: Folk Art and the Narrative Tradition in India (2012) and the editor of Wording the World: Veena Das and Scenes of Inheritance (2014). R O M A C H AT T E R J I

J I S H N U D A S is Lead Economist in the Development Research Group at the World Bank and a Visiting Fellow at the Center for Policy Research, New Delhi. He formed part of the core team for the World Development Report on Gender Equality and Development (2012). V E E N A D A S is Krieger-Eisenhower Professor of Anthropology and Humanities at Johns Hopkins University. She is the author most recently of Affliction: Health, Disease, Poverty (2014) and Life and Words: Violence and the Descent into the Ordinary (2007), and a coeditor of The Ground Between: Anthropologists Engage Philosophy (2014). S O P H I E D AY is Professor of Anthropology at Goldsmiths College, University of London. She is the author most recently of On the Game: Women and Sex Work (2007) and a coeditor of Sex Work, Mobility and Health in Europe (2004). F I L I P D E B O E C K is Research Coordinator of the Institute for Anthropological Research in Africa at the University of Leuven. He is the author most recently of Kinshasa: Tales of the Invisible City (2004) and a coeditor of The Global Horizon: Expectations of Migration in Africa and the Middle East (2012). R O B E RT D E S J A R L A I S is Professor of Anthropology at Sarah Lawrence College. He is the author most recently of Counterplay: An Anthropologist at the Chessboard (2011) and Sensory Biographies: Lives and Deaths among Nepal’s Yolmo Buddhists (2003). C H R I S T O P H E R D O L E is Associate Professor of Anthropology and Sociology at Amherst College. He is the author of Healing Secular Life (2012). D I D I E R FA S S I N is James D. Wolfensohn Professor of Social Science at the Institute for Advanced Study. He is the author most recently of Enforcing Order: An Ethnography of Urban Policing (2013) and Humanitarian Reason: A Moral History of the Present (2011), and the editor of A Companion to Moral Anthropology (2012). A N G E L A G A R C I A is Assistant Professor of Anthropology at Stanford University. She is the author of The Pastoral Clinic: Addiction and Dispossession along the Rio Grande (2010). FAY E G I N S B U R G is David B. Kriser Professor of Anthropology at New York University. She is the author most recently of Mediating Culture: Indigenous Identity in a Digital Age (forthcoming) and a coeditor of Media Worlds: Anthropology on New Terrain (2002).

is a Researcher at the French National Center of Scientific Research (CNRS). She is the author of Cambodge, soigner dans les fracas de l’histoire: Médecins et société (2009). ANNE YVONNE GUILLOU

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C L A R A H A N is Associate Professor of Anthropology at Johns Hopkins University. She is the author of Life in Debt: Times of Care and Violence in Neoliberal Chile (2012). I A N H A R P E R is Senior Lecturer and Head of Anthropology at University of Edinburgh. He is the author of Development and Public Health in the Himalayas: Reflections on Healing in Contemporary Nepal (2014). N A N C Y R O S E H U N T is Professor of History and Obstetrics/Gynecology at University of Michigan, Ann Arbor. She is the author of A Nervous State: Violence, Remedies, and Reverie in Colonial Congo (forthcoming) and A Colonial Lexicon: Of Birth Ritual, Medicalization, and Mobility in the Congo (1999). M A R C I A C . I N H O R N is William K. Lanman Jr. Professor of Anthropology and International Affairs at Yale University. She is the author most recently of The New Arab Man: Emergent Masculinities, Technologies, and Islam in the Middle East (2012) and a coeditor of Medical Anthropology at the Intersections: Histories, Activisms, and Futures (2012).

is Distinguished Visiting Professor of World Religions at Harvard Divinity School. He is the author most recently of Lifeworlds: Essays in Existential Anthropology (2013) and Between One and One Another (2012), and a coeditor of The Ground Between: Anthropologists Engage Philosophy (2014). M I C H A E L D. J A C K S O N

E R I C A C A P L E J A M E S is Associate Professor of Anthropology at MIT. She is the author of Democratic Insecurities (2010). E L E A N A K I M is Associate Professor of Anthropology at the University of California, Irvine. She is the author of Adopted Territory: Transnational Korean Adoptees and the Politics of Belonging (2010). M I C H A E L L A M B E K is Professor of Anthropology at the University of Toronto, Scarborough. He is the author most recently of The Weight of the Past: Living with History in Mahajanga, Madagascar (2002) and the editor of Ordinary Ethics: Anthropology, Language and Action (2010) and A Companion to the Anthropology of Religion (2013). J U L I E L I V I N G S T O N is Professor of History at Rutgers University. She is the author most recently of Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic (2012) and Debility and the Moral Imagination in Botswana (2005), and a coeditor of Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine’s Simple Solutions (2010). A N N E M . L O V E L L is Directeur de Recherche at Université Paris Descartes. She is the coauthor of Santé mentale et société (2004) and the editor of Face aux désastres: Une conversation à quatre voix sur la folie, le care et les grandes détresses collectives (2013). H A R RY M . M A R K S was Elizabeth Treide and A. McGehee Harvey Professor of Medical History at Johns Hopkins University. He is the author of The Progress of Experiment: Science and Therapeutic Reform in the United States, 1900–1990 (2000). J O N AT H A N M . M E T Z L is Frederick B. Rentschler II Professor of Sociology and Medicine, Health, and Society at Vanderbilt University. He is the author most recently of The Protest

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Psychosis: How Schizophrenia Became a Black Disease (2011) and a coeditor of Against Health: How Health Became the New Morality (2010). N AYA N I K A M O O K H E R J E E is Reader in Socio-Cultural Anthropology at Durham University. She is the author of The Spectral Wound: Sexual Violence, Public Memories and the Bangladesh War of 1971 (forthcoming). SAMEENA MULLA is Assistant Professor of Anthropology at Marquette University. She is the author of The Violence of Care: Rape Victims, Forensic Nurses, and Sexual Assault Intervention (2014). A . D AV I D N A P I E R is Professor of Medical Anthropology at University College London. He is the author of Making Things Better: A Workbook on Ritual, Cultural Values, and Environmental Behavior (2013) and a coeditor of Law and Anthropology (2009).

is Assistant Professor of Anthropology at the American University of Beirut. He is currently preparing a manuscript entitled “Between the Womb and the Hour: Statelessness, Obligation and the Disclosure of the World in a Palestinian Refugee Community.” SYLVAIN PERDIGON

ADRIANA PETRYNA is Edmund J. and Louise W. Kahn Term Professor in Anthropology at the University of Pennsylvania. She is the author most recently of When Experiments Travel: Clinical Trials and the Global Search for Human Subjects (2009) and Life Exposed: Biological Citizens after Chernobyl (2013), and a coeditor of When People Come First: Critical Studies in Global Health (2013). S A R A H P I N T O is Associate Professor of Anthropology at Tufts University. She is the author of Daughters of Parvati (2014) and Where There is No Midwife: Birth and Loss in Rural India (2008), and a coeditor of Postcolonial Disorders (2008). R AY N A R A P P is Professor of Anthropology at New York University. She is the author most recently of Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (2000) and a coeditor of Reproduction, Globalization, and the State: New Theoretical and Ethnographic Perspectives (2011). N A B I N R AWA L

is Lecturer in Sociology and Anthropology at Tribhuvan University.

completed her PhD in Anthropology in October 2014 with a dissertation titled “Adoption Bureaucracies: Expert Knowledge, Documents, and Race in the Making of Adoptive Families in Central Mexico” (Johns Hopkins University). Her research interests include the anthropology of the state, race studies, kinship and adoption studies, and legal anthropology and bureaucracy in Mexico and Latin America. ANAID CITLALLI REYES KIPP

is Professor of Anthropology at Princeton University. She is the author of Uncertain Suffering: Racial Health Disparities and Sickle Cell Disease (2009) and Engaged Surrender: African American Women and Islam (2004). C A R O LY N M OX L E Y R O U S E

ASLIHAN SANAL is Cultural Anthropologist at the European Molecular Biology Laboratory, Hamburg. She is the author of New Organs within Us: Transplants and the Moral Economy (2011).

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VA I B H AV S A R I A completed his PhD in Anthropology in December 2014 with a dissertation titled “The Perfumed Semen: The Labour of Loving in Rural Orissa, India” (Johns Hopkins University). He is currently a Postdoctoral Research Fellow at ISERDD.

is Postdoctoral Fellow in Anthropology at the University of Copenhagen. She is the author of Confined Marriages: Absence, Trauma and the Promise of the Ordinary in Occupied Palestine (forthcoming). L OT T E B U C H S E G A L

S H A O J I N G is Associate Professor of Anthropology at Nanjing University. Since 2002, he has conducted extensive field research among HIV-infected commercial plasma donors in rural central China. B H R I G U PAT I S I N G H is Assistant Professor of Anthropology at Brown University. He is the author of Poverty and the Quest for Life: Spiritual and Material Striving in Rural India (2015) and a coeditor of The Ground Between: Anthropologists Engage Philosophy (2014). T H E S TA N F O R D – I S E R D D S T U DY C O L L E C T I V E is a partnership between the India Health Policy Initiative at Stanford University and the Institute of Socio-Economic Research on Development and Democracy (ISERDD), a nonprofit trust devoted to longitudinal research on social and economic issues. L I S A S T E V E N S O N is Assistant Professor of Anthropology at McGill University. She is the author of Life beside Itself: Imagining Care in the Canadian Arctic (2014) and a coeditor of Critical Inuit Studies: An Anthology of Contemporary Arctic Ethnography (2006). B E R N A D E T T E W E G E N S T E I N is Research Professor at Johns Hopkins University. She is the author of The Cosmetic Gaze: Body Modification and the Construction of Beauty (2012) and Getting under the Skin: Body and Media Theory (2006), and the director of the documentary film The Good Breast (2014). Z O Ë H . W O O L is Postdoctoral Fellow and Lecturer in Anthropology at Columbia University. She is the author of Emergent Ordinaries: The Weight of Life at Walter Reed (forthcoming).

CONTRIBUTORS

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INDEX

Page numbers in italics indicate illustrations. abandonment: children and, 105–106, 108–109, 116–117, 127n1, 136, 140; disinterest and, 664–668, 671–672; mental health/illness, 511, 515, 520, 523; youth/death relation and, 758, 763 abortion, 62, 71–72, 77–79, 80n3, 130, 132–135, 137–140, 530–531, 643, 645n32 Abraham/Ibrahim’s ritual sacrifice, 418, 422, 632 accredited social health activist (ASHA), 48–49, 52–59, 61, 63 addiction: overview of, 165, 316–319; addiction treatment services and, 322–323, 327n7; agency and, 322, 327n7; care/caregiving and, 165, 317–319, 322–323, 325–326; continuity and, 325; death and, 317, 319–320, 327n1; desires and, 318, 324–325; ethics and, 318, 323, 325, 328n8; everyday life and, 316, 318, 323, 327n5; futurity and, 318–321, 324–325; gender and, 322–323, 327n7; gift and, 319–321; healers/healing and, 165, 319, 322–323; incarceration and, 320–327; institutions and, 165, 317, 322; intimacies

and, 165, 322; kinship and, 165, 317, 321–324, 327nn3–4; loss and, 165, 316, 318–321, 323–325, 327n1, 327n3; materiality and, 317, 323, 328n8; memory and, 319–321, 327, 327n6; mental health/illness and, 322, 324; mother and daughter relationship and, 165, 318, 322, 324–327; poverty and, 317, 321–322, 327n2; self and, 313, 326; shame and, 319; silence and, 324; survival and, 317–318, 325, 327n1; temporality/ies and, 317–319, 321; touch/haptic and, 325–326; vulnerabilities and, 318, 322, 325 adoptees: overview of, 43, 114–118, 127n1; abandonment and, 116–117, 127n1; adoptive parents of, 115, 119, 121–122; affective self-determination and, 118–119, 122–123; alternative expressions of loss and, 125–127; antiautobiographies and, 117–120; anti-transnational adoption activism and, 114–115, 117–119, 123–124; ASK and, 123; better off dead and, 117; biopolitics and, 123–125; biopower and, 125; bureaucracy and, 127; choice/nonchoice and, 118, 120,

82 9

adoptees (continued) 124; collective identification and, 118, 125, 127; commodification and, 125; continuity and, 117; development and, 115, 118–120, 124; ethics and, 115–116, 121–124; family and, 115, 119, 121–123; Gathering conferences and, 114, 117–119, 123; gender and, 115–116, 120; guilt and, 116, 119; happiness and, 119, 121; historical narrative for, 118, 127n1; humanitarianism and, 116, 117–120, 122–125; humanity and, 116–122; (im) possible lives of, 117, 120–121, 123–125; justice/injustices and, 115–116, 124–125; kinship and, 115, 117–119, 121–122, 127; language and desire and, 126; legislative reforms and, 124; life and death as conjoined and, 117; loss and, 115–116, 118, 121, 123–127; memory and, 120–121, 127; motherhood/birth mothers and, 115–116, 120; myths and, 118, 124; (neo)liberalism and, 116, 122–123, 125; poverty and, 115, 118, 124, 127n1; race and, 115, 119–120; reproductive rights and, 114; risk and, 115–116, 120; sacrifice and, 124; self and, 115–119, 121–123, 127; shame and, 114, 116, 127n1; social issues and, 117, 120, 125; subjectivity and, 119, 125–127; suffering and, 116, 125, 127; symbolism and, 119, 126; trauma and, 115–116, 120 Adoption Law (Inter-Country Adoption Law) of 1972, 136, 138, 140n6 adoptions: overview of, 43, 100–103, 110–111; abandonment and, 105–106, 108–109; alleged parents or presuntos padres and, 106, 108–110; biopolitical objectives and, 104; biopolitics and, 104; bureaucracy and, 101–102, 104–111, 112n4; children’s shelter or albergue and, 102, 104–108; DIF and, 100–102, 100–104, 110, 111n1, 111n2; documents/documentation and bureaucracy and, 101–102, 104–106, 108–110, 112n4; expert/non-expert knowledge and, 102; exposed status of children or expósitos and, 106–107; family and, 102–104, 107–110; gender and, 111; government and, 101–104, 107, 109–110; heterogeneity and, 101; Hinduism and, 73; Islam and, 73, 136; justice/injustices and children and,

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107–108, 111; kinship and, 102–111, 112n4; knowledge and government and, 102, 107, 109–110; law/s and, 101–104, 106–108, 111; legitimacy and bureaucracy and, 101, 110–111; life and death as conjoined and adoption files and, 101; malnutrition and, 105; media and, 100–101, 108, 110; movement of documents through system and, 102, 104–106, 110, 112n4; nationalism and, 102–104; obligations and, 104; parental rights and, 106, 109; plenary adoption or adopción plena and, 103; population control/management and, 110; poverty and, 100–101, 104–110; queer adoptees and, 122; rights of children and, 102–104, 112n3; sexual/reproductive violence and, 132, 134–137, 139, 140n6; status of children and, 106; structural violence and, 107; Technical Adoption Council meeting and, 108–110; tradition and documents and, 101; visible/invisible and, 107. See also adoptees Adorno, Theodor, 449–450 advance directives, and medicalization of dying, 679–681 aesthetics, 95–96, 349, 374–375, 382, 386–387, 544–545, 548, 754, 761 affects: Katrina-related deaths and, 567–568; organ transplant programs and, 334, 426; self-determination, 118–119, 122–123, 600–601, 612–614, 618nn28–29; valuation of lives and, 627, 770, 777, 781; youth/ death relation and, 757 Afghanistan war, 333, 401, 405–406, 413n8, 775–776, 784 African Americans. See blacks Agamben, Giorgio, 137, 139, 713, 758–759, 774 Agatha, Saint, 383–386, 386, 395, 396, 397nn5–7 agency: addiction and, 322, 327n7; al-Qireyne and, 144, 154; ASHA workers and, 63; dying and, 706; immunology and viruses and, 357–359; Katrina-related deaths and, 559–560, 567, 570n2; loss and, 477; MFPR and, 78; normative death and, 655; pain and, 187; psychosocial treatment programs and, 305, 312; of secular authority, 333, 371, 379n4; social issues and, 322, 327n7; stem cell biotechnologies and patients’, 14;

suicides and, 719; viruses as living thing and, 357–359 agriculture, 217, 225–226, 229n14, 447, 580, 582–585, 588–591, 595n6 Ahmed, Sara, 122 “AIDS villages” populations, and HIV/AIDS, 218–221 albumin (human serum albumin), as plasmaderived blood product, 223–225, 229n10, 229n13 alchemy, and healing, 642, 645n27 Alevism, 372, 379n2, 379n8 Alexander, Michelle, 554n3 alleged parents (presuntos padres), 106, 108–110 Allen, Lori, 476, 479, 489 al-Qireyne (“enigmatic life form”), and refugee community: agency and, 144, 154; cemetery and healer and, 151–152; cleansing and corpses and, 152, 154; compassion and, 143, 156; contiguities and, 151–152, 154–155; continuity and, 153; death and, 143, 149–150, 152; desires and, 143, 153; dreams and, 143–144, 148, 153–155; everyday life and, 144–145, 148–149; evidence and, 143, 145; family residence or dar and, 145–148; fear and, 147–148; female infertility and, 144–145; gender and, 145, 153; healer or sheykh and, 146–147, 150–152, 154; healers/ healing and textuality and, 148; humanitarianism and, 44; humanity and, 148, 154; identity and, 144–145; intersubjectivity/ies and, 156; kinship and, 44, 143–145, 147, 150–151, 153–155; life and death as conjoined and, 143, 152; men’s experiences and, 145; military conflicts/operations and, 150–151, 155–156, 156n3; miscarriages and, 144–146, 148, 151–152, 154–156; modernist form of Islam and, 149; mothers’ anxieties caring for children and, 44, 147, 156; mourning and, 154; nationalism and, 143; nonhuman forms of life and, 148; obligations and, 149; pain and language relation and, 146–147, 156; performativity and, 147; political violence and, 143; poverty and, 152; pregnant women and, 145–147, 151–152, 154–155; psychic and, 144; psychotherapeutic pedagogies and, 143; Quran and, 145, 148–149; reproductive

futures and, 44, 155–156; sanity/”mad” and, 153; self and, 145, 149, 153–154; soft violence against refugee community and, 151–152; spirit possession or dis/possession and, 44, 143, 153; stillbirth and, 154; the subject and the world and, 153; suffering and, 144; symbolism and, 149, 153–156, 157n4; “talisman or hijab and, 147–152; therapy/therapeutics and, 143; tradition/s and, 145; trauma and, 143–144, 155; the unconscious and, 156; vulnerabilities and, 145 Althusser, Louis, 449 ambulance service, and reproductive health, 50–51, 53–54, 59 American Society for Aesthetic Plastic Surgery (ASAPS), 383 Americas Development Foundation (ADF), 304 ancestors, 63, 303, 437, 594, 635–636, 639–640, 643, 644n3, 645n22 Anderson, Siwan, 786, 807 Ang, Choulean, 735, 740n10 anger, 482–484, 625, 699–700, 703, 707 Anidjar, Gil, 351 animation/de-animation/reanimation, 623, 630–631, 643, 644n8, 645n29 Anıt-kabir tomb, of Atatürk, 367–368, 370 anthropology of medicine (medical anthropology), 2, 5, 20–21, 31n1, 161, 730 antibodies, and immunology, 358–363 antiretroviral (ARV) drugs programs, 185–186, 201n3, 218, 256 anti-transnational adoption activism, 114–115, 117–119, 123–124 anxiety, when heart beats fast due to (ji ghabrana), 95, 97 Applebaum, Paul, 206 Arendt, Hannah, 451, 652, 774 Aretxaga, Begoña, 168, 181n3 Aristide, Jean-Bertrand, 165, 301, 303, 311 Aristotle, 179, 182n15, 273, 554, 652 Arnakak, Jaypeetee, 723–724, 725n8 Arnold, David, 7–8 Arrow, Kenneth, 279, 285n17 Asad, Talal, 32n5, 187, 479 asceticism, 91, 94, 97, 576, 587 Ashley Treatment, and disabilities, 529

INDEX

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aspirations: overview of, 41, 448; colonialism and, 435; combat-injured soldiers’ rehabilitation and, 403, 405, 411–412; hijras and, 42, 83; hunger and, 589, 591; justice/ injustices and, 161, 165–166; mental health/ illness, 511, 517–518; racial health disparities and, 547, 551; for recovery, 161; valuation of lives and, 627, 775 assisted conception, 42, 47, 67–69, 71–79, 529–530 assisted suicide, 525–526, 709n4 associative recognition theory, 355–356 Atatürk, Mustafa Kemal, 332, 367–372, 375–376, 379n8 aural/acoustic evidence, and colonialism, 435, 437 Austin, J. L., 26–27 autism spectrum disorders (ASDs), 9–12, 164, 446, 535 autobiographies/antiautobiographies, 117–120, 505 autonomy/self-autonomy, 276, 434, 445, 453, 529, 534, 700, 706 auxiliary nurse midwives (ANMs), 49, 52, 54, 56, 60, 62–64 Azuma Hiroki, 670 Bababaswe, Zacharie, 760 Bachelard, Gaston, 432–435 bad death, 447, 568–569, 656. See also death; good death Badiou, Alain, 349, 449–452 Bakhtin, Mikhail, 198, 626–627 Ball, Patrick, 618n28 banana tree model, 635–636, 644n17 Bandyopadhyay, Jayanta, 591 Barbosa, Joaquim, 257 Bataille, Georges, 346 Bateson, Gregory, 356 Baucus, Max, 686 “beautiful and good” (kalokagathia), 382, 384, 395 beauty’s “dark side,” and cosmetic surgery after breast cancer, 333, 383–385 being-in-the-world, 444–445, 465, 470–473, 497–498, 506, 604, 617n19. See also world/worldliness being/to be versus death, 630, 644nn3–4, 698, 701, 708

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INDEX

belief/secular belief, and secular body, 340–342 belonging, 161–162, 168, 176–177, 444, 475, 664, 667–668, 669 Benjamin, Jessica, 516 Benjamin, Walter, 721, 725n6 Bennett, Gaymon, 32n5 bereavement, 696–700, 707, 709n6 Bergson, Henri, 449, 660n4 Berman, Nina, 414n14 Bernard, Claude, 17 better off dead, 117, 399–400, 405–406, 413n3, 414n12 “between” (bardo), 651–652, 660n2 Bharadwaj, Aditya, 14, 23 Biehl, João Guilherme, 713, 758, 772 binary oppositions, and life and death, 630, 634, 641, 644n7, 659 Binswanger, Ludwig, 716, 724 bioethics, 47, 68–71, 529 biological: biolegitimacy and, 7–8; biological sciences/informatics and, 2, 5, 6–7; healers/healing and, 332–333, 369–370; idiosyncrasy and, 164, 273–274, 283–284, 675, 677; natural and social mutual absorption and, 9; oncology and medicalization of dying and, 678; organ transplant programs and, 334, 426; regeneration within rituals of death and sacrifice and, 2; subdisciplinary boundaries and, 2, 31n1; valuation of lives and, 772 biomedical: overview of, 161; care/caregiving and, 284n6; life course and, 68; local biologies contextualization and, 15, 186; reproductive health and, 53, 60; suicideprevention campaigns in Canada and, 625, 628, 713–714; universality of the body/ies and, 15 Bion, Wilfrid, 450, 456 biopolitics: adoptions and, 104, 123–125; biopolitical objectives and, 104; biosecurity relation to, 8, 32n5; biosociality and, 8–9; colonialism and, 335, 433, 436, 438; definition of, 4; disabilities and, 526; healers/healing and, 370; humanitarianism and, 7; individual as subject and, 27; justice/injustices and, 254; Katrina-related deaths and, 567; life and, 4, 8, 14–15;

“newness” and, 3, 5–6, 8; normativity and, 4; organ transplant programs and, 425, 427–428, 429n7; psychic and, 124, 331, 340, 714; racial health disparities and, 545–547, 554; right-to-health litigation and, 253–254, 264–265; secular body/ies and, 331, 340; self-fashioning and, 254; sexual/ reproductive violence and, 131, 134, 138–139; situation and event relation and, 5, 27–28; suicides and, 626, 713–714, 724; valuation of lives and, 44, 772; vulnerabilities of state and, 8 biopower, 2–4, 6–8, 6–9, 14–15, 125, 254, 625, 713 biosecurity, 3, 5–8, 32n5 biosociality, 3, 8–9, 12, 32n6, 443 biotechnologies, and reproduction: overview of, 41, 47, 67–68, 79–80; ARTs and, 529–530; assisted conception and, 42, 47, 67–69, 71–79; bioethics and, 68–71; conception success statistics and, 73, 77; creation/ destruction of embryos and, 68–73, 77–78; death and, 67–68; disabilities and, 529–530, 537n2; Euro-America and, 69–70, 73, 80n2; female infertility and, 71–73; fetal demise/pregnancy loss and, 76–78, 80n1; fetal tissue use in, 72; genetics and, 75–76; global and, 14, 69–71, 79–80; guilt and, 71–72; HOMP and, 77–78; “hope technologies” and, 42, 73–74, 76; humanity and, 68–74; ICSI and, 73–77, 80n2; individuals’ conflicts and, 71–72, 78–79; individuals’ conflicts and embryo “donation” and, 71–72; Islam/Muslim and, 68, 73–77, 80n2; IVF and, 41, 68–74, 76–79, 80n2; kinship and, 79; legislation and, 68–70; life and death as conjoined and, 47, 67–71, 79; little deaths and, 68, 70–74, 77, 79; local biologies contextualization and, 79–80; loss and little deaths and, 68, 70–73; male infertility and, 73–77, 80n2; MFPR and, 77–79; miscarriages and, 61, 64, 77; “newness” and, 41; pregnancy dangers and, 77; rebirth/reborn and, 71; regeneration/perpetuation and little deaths and, 68; resisting death and, 67; “right to die” and, 67; “right-to-life” movements and, 69, 446; risk and, 61;

sacrifice and, 70–72, 79; stem cell biotechnologies and, 14, 42, 47, 68–73, 79; stillbirth and, 79; structural violence and, 14; suffering and, 74, 77; supplementarity and, 70–71; symbolism and, 71; “takehome” babies and, 73, 77; therapeutic security and, 14, 68–71, 79 bioterrorism, 32n5 Birge, John Kingsley, 375 birth mothers and motherhood. See motherhood and birth mothers blacks (African Americans): abolitionism and, 775; black pathology/behaviorist and, 446, 546–549, 552, 554, 555nn6–7; Black Power and, 162, 209–212; civil rights movement and, 162, 207, 209–213, 544, 552, 554n1; HIV/AIDS and, 779; illegal/legal drug overuse and, 552; incarceration and, 547–548, 551–554; Katrina-related deaths and, 559, 567, 569, 570nn1–2; life expectancy and, 779–780; mortality rates and, 779–780; schizophrenia and, 209–212; schizophrenia and black activist and, 162, 207, 209–213; symptoms versus black pathology and, 446, 547–548, 554; urban and, 207, 212, 779–780; waiting rooms and, 694–695. See also whites Blair, Tony, 776 blame, 514, 517–518, 601–602, 615n9 blessing/curse of fertility for married couples, 84, 88–89, 91, 96–97 Bleuler, Paul Eugen, 207–208 Bloch, Ernst, 460 Bloch, Maurice, 633, 730–733 blood donations, 163, 217, 220–225, 228n1, 229n8, 229n10, 229n13, 631 Blume, Stuart S., 10 Boddy, Janice, 153 body/ies: biomedicine and universality of, 15; bodying/bodied forth and, 299, 299n4, 703; combat-injured soldiers’ rehabilitation and, 333–334, 399–401, 403–406, 413nn9–10, 413n10, 414n12; death and, 631, 644n9; dying and, 625, 698, 700–703, 705–707, 709n5, 709nn10–12; fragility of, 3–4, 28–30, 165–166, 443, 527; healers/healing and, 332–333, 368–370,

INDEX

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83 3

body/ies (continued) 369–370, 378; healthy body/ies and, 331, 339, 351; life and, 332, 354, 357, 631, 644n9; maternal body/ies and, 64; medicalization of dying and, 625, 678–679, 688–691; mind, body, soul or Geist, Körper, Seele and, 640–641, 645n25; normative death and, 624, 653, 657–658; pain and, 187; scale of, 17, 20, 30; social issues and, 7, 87, 125; voices as tied to, 299n4; youth/death relation and, 754, 757, 762–763. See also embodiment Borges, Jorge Luis, 780 Borstam, Anna Jin Hwa, 125–127 Bouazizi, Mohamed, 762 Bourdieu, Pierre, 511 brain death, and organ transplant programs, 419, 424–428 “breath” (nefes), and healers, 370–375, 377, 379n2 Brekke, John, 206 bricolage, 6, 63–64 Brigden, Stephanie, 615n7 Brison, Karen J., 486, 489 Brodwin, Paul, 312 Bromberg, Walter, 209, 211 brother-sister incest, 86–87, 90, 93, 98n5 Brunschvicg, Léon, 449 Buddhism: cemeteries/burials and, 667; life and death as conjoined and, 1; merits and, 732, 734; self-immolation and, 448, 602–604, 607–608, 613–614, 615n5; Theravadin, 626, 732, 734, 741n20 bureaucracy: adoptees and, 127; adoptions and, 101–102, 104–111, 112n4; documents/ documentation and, 101–102, 104–106, 108–110, 112n4; dying and, 698; legitimacy/illegitimacy and, 101, 110–111; local townships and, 219, 225–226, 228n4, 229n14; medicalization of dying and, 680; suicides and, 713, 716, 725; tradition/s versus legitimacy of documents and, 101; waiting in clinics and, 161, 168–171, 177–178 Burnet, F. Macfarlane, 354–355, 363 Bush, George W., 69 Butler, Judith, 125, 411, 443, 507

834

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INDEX

cadaverous (cadavéré), and youth/death relation, 749, 757–758, 765n16 cadavers (corpses), 152, 154, 334, 420, 422, 424–427, 429n7, 667, 743, 746–748, 755–756, 758, 760–763, 765n13 calibration of relationship, and hijras, 86 Callahan, Daniel, 676 cancer: overview of, 162, 182n16, 185–187, 200; autopalliation and, 196, 198–199; cancer-care evaluation services in clinics and, 161, 169–176; cancer statistics and, 185–186, 201n2; care/caregiving and, 162, 182n16, 190, 195–196, 199–200; chemotherapy and, 191–192; clinic and, 162; compassion and, 188, 198, 202n13; DCIS and, 387–389, 392–395, 394, 397n14; diagnosis and, 191–192, 201n2, 201n5; dying space and, 162, 189, 195; embodiment and, 194–195, 198–199; ethic of palliation and, 182n16, 186, 190; gender and medical costs and, 685; healers/ healing and, 187, 195, 199; local biologies contextualization and, 186; pain and, 162, 186, 201nn9–10, 202n11, 202n13, 202n15, 202n17; palliation and, 186–187, 190–192, 195, 199–200, 202n13; pharmaceutical politics and, 162, 186, 190; phenomenology and, 185, 190, 197, 199; PMH and, 185; prostate cancer and, 675, 680, 685, 691; silence of patients and, 162, 192–196, 200, 202n15; social issues and, 162, 187, 191, 194–200; statistics and, 270, 284, 383, 396n3; suffering and, 187, 199–200; touch/haptic and, 199; visible/invisible and, 190; vulnerabilities and, 189; WHO and, 190; women and, 677. See also cosmetic surgery after breast cancer cancer outpatient facility: overview of, 623–625, 675; advance directives and, 679–681; biological and, 678; blacks and waiting rooms and, 694–695; the body/ies and, 625, 678–679, 688–691; bureaucracy and, 680; care/caregiving and, 676–677, 679, 681, 686–687, 697; class/es and, 694–695; clinical trials and, 687; continuity and, 686; death and, 681; disabilities and, 694–695; DNR orders and, 678–679, 681; everyday

life and, 675–676, 686–687, 691–692, 695; experiences and, 625, 692; health care reform and, 676, 687; health insurance and, 680, 684–686; human rights and advance directives and, 681; idiosyncrasy in biology and, 675, 677; individuality and, 677, 692–694; law/s and, 625, 680–681; loss and, 694; medical costs and, 684–686; medicine/medical technologies and, 675, 678–679, 683, 686–687, 689, 692–693, 695; milieu and individuality and, 625; pain and, 689–691; palliation and, 697; prostate cancer and, 675, 680, 685, 691; shame and, 681; social issues and, 694–695; spaces/ places and, 683–684, 694; temporality/ies and, 677–678, 686–687; visible/invisible and, 694–695; vitality and, 690; waiting and, 677–678, 681–683; waiting rooms and, 677, 681–682; women and, 677 Canguilhem, Georges: biotechnological “life” and resistance to death, 67; clinic, 164, 446; death and situation relation to event, 559, 570; diseases and normal pathology, 333; everyday life and normal and pathological, 27; healing and individuality, 18; idiosyncrasy in medicine, 164; individuality, 3, 16–20, 27, 32n9, 559; knowledge of life, 772; life and milieu relation, 3, 16–20, 27, 32n9; “measure of health,” 271; normal and pathological, 16–18, 27, 32n10; some ones’ death, 563, 566–567; vitalism, 32n10, 566; vitality, 3, 16–18, 32n10 capitalism, and family corporate system, 665–666, 669, 672n3 Caravalho, Joseph, Jr., 406 care: anonymous, 716–717; self-care and, 9, 12, 313 care/caregiving: addiction and, 165, 317–319, 322–323, 325–326; anonymous, 716–717; antenatal, 47–49, 51, 54; ASDs and, 11–12; biomedical and, 284n6; cancer and, 162, 182n16, 190, 195–196, 199–200; combatinjured soldiers’ rehabilitation and, 334, 401–402, 408, 410; conveyor belt, 161–162, 164, 176–177; for disabled persons, 413n2, 529, 531, 533–536; dying and, 624–625, 697–708, 699–700, 703–704, 709nn10–

12; healers/healing and, 18, 30, 176, 368; hijras and, 83, 95–96; justice/injustices and, 30; lonely deaths of elders and, 664, 667, 669–670; loss and, 483–485, 488; medicalization of dying and, 676–677, 679, 681, 686–687; mental illness, 517; mothers’ anxieties for children and, 44, 147, 156; normative death and, 624, 652, 659; police violence and, 504; psychosocial treatment programs and, 302, 304, 308; racial health disparities and, 446, 543–544; reproductive health and, 47–48, 50–59, 62–63, 64n1; right-to-health litigation and, 261–262; the state and, 31; suicides and, 722, 725nn7–8; waiting in clinics and, 161–162, 164, 168, 175–177, 180, 182n13 carnality, 42, 83, 86, 88, 93–96, 334, 400–403, 410 Carsten, Janet, 117, 121, 479, 631 Cartesianism, 356, 362, 465 Casement, Roger, 436 caste hierarchies, 53–54, 56–57, 62, 580–582, 584–588, 591, 593, 595n9 Catholic Church, 627, 709n5, 766n25, 773–774. See also Christianity Cavell, Stanley, 3, 23–29, 31, 33n13, 202n17, 489, 494, 629, 634, 644n1 Cazdyn, Eric, 664 celebration (joy), 62–64, 95–96, 334–335, 431–434, 438, 706 cemeteries/burials: death and, 635–640; healers/healing and, 151–152, 367–370, 375, 376; lonely deaths of elders and, 667; Switzerland and, 640–641, 645n24; youth/ death relation and, 626, 743–744, 748–754, 751, 757–758, 760, 760, 763, 765nn16–20 Centers for Disease Control and Prevention (CDC), 206, 447, 535, 562, 564 cerebral ataxia case, and exceptional-medicines program, 252–253, 256, 258, 261–262, 264 Cezar, Denise Oliveira, 263 Chawla, Janet, 62–63 chemotherapy, 170–172, 174–175, 180, 191–192, 236, 239, 247n4 childbirth: birth songs and, 63; hijras’ pregnancy and childbirth question and, 84, 87–89, 91, 93–95, 98n8; institutional

INDEX

•

83 5

childbirth (continued) deliveries and, 48–51, 54–59, 61–63, 64n1; life and death as conjoined and, 41; newborn babies and, 42, 83–84, 89–92, 94–97, 149–150, 526, 528, 532; poverty and, 47; reproductive health and, 47–64; risks and reproductive health and, 47, 59–60, 64; stillbirth and, 79, 154 children: abandoned, 105–106, 108–109, 116–117, 127n1, 136, 140; disabilities and, 525–526; Hindu adoptions and, 73; homicide rate, 346; homicide rate and, 346; human rights and, 102–104, 103, 112n3; “justice” for, 107–108; mortality rate and, 780; mortality rates and, 753, 765n20, 766n22; mothers’ anxieties in caring for, 44, 147, 156; personhood after sexual/ reproductive violence and, 44, 137–140, 138–140; silence and, 736; street children and, 760. See also adoptees; adoptions; youth/death relation children’s shelter, state temporary (albergue), 102, 104–108 choice/nonchoice, 118, 120, 124 Christianity: biopower and, 718; death and, 632–633, 637, 641–642, 645n25; dying and, 709n5; gifts and, 632–633; martyrdom and, 333, 383–386, 386, 395, 396, 397nn5–7; mind, body, soul or Geist, Körper, Seele and, 640–641, 645n25; psychosocial treatment programs and, 165, 302, 312; reincarnation and, 641; sacrifice and, 632–633, 773–774; secret prayers/healing and, 642; secular body/ies and, 337, 340–341, 343–344, 349–350; souls and, 302; suicides and, 718; touch/haptic and, 708; valuation of lives and, 627, 773–774; youth/death relation and, 755, 759–760, 766n25 Christie, Laird, 717, 725nn5–6 chronic crisis, and loss, 489 Cicero, 774 citizenship: biocitizenship and, 3, 8–9, 12, 32n6, 443, 772; biopolitical, 41; combat-injured soldiers’ rehabilitation and, 333–334, 400, 403; disabilities and, 525–526, 536; embodiment of, 403; humanity and, 400; racial health disparities and, 446, 551–552; therapeutic security and, 14; waiting in

836

•

INDEX

clinics and, 161–162, 168, 178–180, 181n3, 182nn15–18; women and, 373, 379n9. See also personhood class/es, 208–210, 548, 550–551, 559, 571n4, 627, 694–695, 776–778, 781. See also caste hierarchies cleansing, 135, 137–139, 152, 154, 434, 745–747, 765nn12–13 clinic, the: cancer and, 162; clinical trials, 14, 164, 263–264, 271–278, 281–284, 285n9, 285nn12–14, 687; DOTS TB program and, 233–236, 238, 241–242, 244–246; healers/ healing and, 332, 368; medical education/ knowledge and, 161–162, 164; racial health disparities and, 543, 545–549, 551–553; recovery from disease and, 164, 271; right-to-health litigation and, 253–254, 257. See also cancer outpatient facility; waiting, and the clinic Clinton, Bill, 545 Coetzee, J. M., 671 Cohen, Lawrence, 83, 97n2, 511 Cohn, Melvin, 355–356 coins, and death, 634, 637–639, 645n19 Coleman, Loren, 616n10 collective identification: adoptees and, 118, 125, 127; loss and, 475, 479–480, 484, 486–489; mourning and, 570; normative death and, 624, 653, 655, 658; organ transplant programs and, 419, 422–423, 425, 428, 429n6; secular body/ies and, 350; self-immolation and, 603–604, 613, 616n15; survival and, 731; “we” and, 28, 443–444, 489, 507. See also identity Collier, Stephen J., 32n5 colonialism: overview of, 6–8, 334–335, 431–433, 438; ancestors and, 437; aspiration/ aspirational and, 435; aural/acoustic evidence and, 435, 437; autonomy/ self-autonomy and, 434; biolegitimacy and, 7–8; biopolitics and, 335, 433, 436, 438; biopower and, 6; biosecurity and, 7–8; cleansing and, 434; cruelty and, 432–433; death and, 431–433, 435–436, 438; debris/ material bits and, 431–432, 434, 437–438; demographic and, 432, 434, 436; development and, 432–433, 438; dream/reverie and, 334–335, 432–438; event-aftermath

and, 334–335, 432–434, 436–437; event and situation relation and, 334–335, 432–434, 436–437; expectations/horizons of expectation and, 431–433, 437–438; experiences and spaces/places and, 431–434, 436–438; expulsion/eviction dream/reverie and, 334–335, 434–438; festive zone and, 334–335, 432–434, 437–438; futurity and, 431–438; healers/ healing and, 433–436, 438; health of population and, 7; humanitarianism and, 435–437; humanitarianism and hunger and, 577–578; insurgency and, 334–335, 432–433; joy/celebration and, 334–335, 431–434, 438; life and death as conjoined and, 335, 432–433, 435; ludic and, 432–433; materiality and, 431–432, 434, 437–438; medical archive and, 431–433, 435–438; medical archive during, 431–433, 435–438; memory and, 431–434, 437–438; methodologies and, 431–434; nervousness and, 7, 335, 433, 435–438; “newness” and, 6–7; race and, 436, 438; refuge spaces and, 335, 433–434, 437–438; reproductive health and, 334–335, 432–433; respite experience and, 335, 433–434, 437; security/secure spaces and, 435–438; sexual assault and, 435–436; social issues and, 7–8; spaces of flight/ refuge/respite and, 335, 433–434, 437; spaces/places and, 335, 431–438; subjectivity/ies and, 431, 433, 435, 438; suffering and, 431–433, 435; suicides and, 713–714, 716–719, 721, 724, 725nn4–5, 726n11; symbolism and, 432; temporality/ies and, 334–335, 431–433, 436–438; therapy/ therapeutics during, 335, 431–438; tradition/s and, 436–438; trauma and, 432, 435–436; vernacular zone and, 334–335, 433, 437–438; violence and, 334–335, 432–435, 438; visible/invisible and, 435, 437; vulnerabilities and, 6–7; youth/death relation and, 748–749, 751, 766n23 Comaroff, Jean, 255, 262 Comaroff, John, 255, 262 combat-injured soldiers’ rehabilitation: overview of, 333–334, 399–400, 412, 413n5; Afghanistan war and, 333, 401, 405–406, 413n8, 784; aspirations/aspirational and, 403, 405,

411–412; better off dead and, 399–400, 405–406, 413n3, 414n12; body/ies and, 333–334, 399–401, 403–406, 413nn9–10, 413n10, 414n12; care/caregiving and, 334, 401–402, 408, 410; carnality and, 334, 400–403, 410; compensation for veterans and, 399, 413n1; conjugal relations and, 333–334, 401–403, 406–411, 414n14; continuity and, 411; DCBIs and, 405–406, 414n11; death and, 399, 406–407; disabilities and, 405, 412, 413n4, 413nn9– 10; flesh/fleshy and, 399–401, 403–408, 411–412, 413n9; gender and, 334, 399–400, 402–403, 406; heterogeneity and, 400–401, 403, 405–412, 413n7, 413n10, 414n14; homosexuality and, 413n7; IEDs injuries and, 401, 404, 406, 409, 411; individuality and, 399–400, 403; infantalization and, 407–408; intimacies and, 400, 403–412, 413n7; Iraq war and, 333, 401, 405, 413n8, 414n11; kinship and, 401–403, 407–408; life and, 334, 399–400, 403–408, 413n4, 414n12; masculinity and, 334, 400, 403, 405–408, 412; materiality and, 399–400, 411–412; nationalism and, 333–334, 399–400, 403, 413n7; necropolitics and, 399, 412, 413n9; (neo)liberalism and, 334, 399–400, 402–404, 406, 410, 412; NMAs and, 401–402, 407–408; normativity and, 399–400, 402–405, 407–412, 413n7, 413n10, 414n14; personhood and, 399–400, 403, 406, 411, 413n2; precarity and, 400, 407–408, 411; psychic and, 733, 740n3; PTSD and, 413n8, 733; queer/queerness and, 401, 411–412, 413n4; race and, 413n6; reproductive futures and, 399–401, 403, 405, 407, 409–411, 413n10, 414n14; risk and, 406, 408, 410; self-reliance/self-sufficiency and, 399–400, 403, 406–407, 410–411; sexuality and, 334, 399–401, 407–411, 413n10; social issues and, 334, 406–407, 414n13; solitude and, 411; suicides and, 406; symbolism and, 400, 406, 412; TBI and, 401, 405, 413n8; touch/haptic and, 400, 406, 408–412; Vietnam War and, 399, 404–405, 413n10, 733, 740n3; vitality and, 406; vulnerabilities and, 408, 411; world wars and, 333, 400–401, 413n6

INDEX

•

83 7

commodification: adoptees and, 125; albumin as plasma-derived blood product efficacy and, 224, 229n13; China and leprosy treatments and, 229n12; citizenship and, 252–253, 256, 258, 261–262; disabilities and newborn babies and, 528, 530–531; 9/11 deaths and, 772, 776–777; organ sales and, 419; plasma-fraction industry and, 163, 224–225, 229n13; racial health disparities and, 543; of time and waiting in clinic, 173, 181n9; valuation of lives and, 771–773, 776–777; youth/death relation and, 750, 755, 765n20, 766n24 communication, 11, 53–54, 497–500, 506, 602, 616n10, 703–704, 707, 709n14. See also language communities: adoptees’ loss and, 125; disabilities and, 446, 529, 531–533, 537; dying and, 703–707, 705; healers/healing and, 726n13; right-to-health litigation and, 257, 264–265; suicides and, 713, 718, 723; survival and, 736 community health centers (CHCs), 52, 56, 59, 61–64 compassion, 143, 156, 181n12, 188, 198, 202n13, 348, 350 conditional cash-transfer program, and reproductive health, 49–50, 55–59 confessional therapeutics, and psychosocial treatment programs, 302, 304–305 conjugal relations, 333–334, 401–403, 406–411, 414n14, 475–477, 480–490, 490n1, 495–496, 498–499, 510, 514–517, 520–521 connections, and mental illness, 514, 518–519, 522 Conrad, Joseph, 436 consciousness, and normative death, 648, 652, 654–655, 657. See also unconscious, the consent, and organ transplant programs, 419–420 container-contained model, and life/concept tension, 456–457 contiguities, 91–93, 95, 151–152, 154–155 continuity: addiction and, 325; adoptees and, 117; al-Qireyne in refugee community and, 153; cancer outpatient facility and, 686; combat-injured soldiers’ rehabilitation and, 411; healers/healing and, 342, 376;

838

•

INDEX

individual/world relation and, 472; Katrina-related deaths and, 570; lonely deaths of elders and, 665; mental health/ illness and, 501, 519; normative death and, 658–659; reproductive health and discontinuities and, 52–53; survival and, 730–731, 736; waiting in clinics and, 177–178 contraception, 61–62 conversations, as everyday actions, 497–500, 506 conversion experiences, 165, 309, 312 Cooper, Astley, 383 copulation, 84–85, 87–88, 93–97, 97n3, 747, 755, 756, 762–763, 765n13 corpses (cadavers), 152, 154, 334, 420, 422, 424–427, 429n7, 667, 743, 746–748, 755–756, 758, 760–763, 765n13 cosmetic surgery after breast cancer: overview of, 333, 382–384, 395–396; aesthetics and, 382, 386–387; “beautiful and good” or kalokagathia and, 382, 384, 395; beauty’s “dark side” and, 333, 383–385; Christian martyrdom and, 333, 383–386, 386, 395, 396, 397nn5–7; DCIS and, 387–389, 392–395, 394, 397n14; death and, 333, 383–385, 387, 393, 395; documentaries on, 384; documentary and, 333, 382–384, 386–396, 396n1; ego and, 385; femininity and, 382–385, 387–389, 392–395, 396n4; gender and, 333, 383, 385, 393–394, 396n4; the “good” and the “bad” breast and, 333, 383, 385–391; grammar and, 333; happiness and, 382, 392–393; heterogeneity and, 392–393; identity and, 383–384, 392, 394; lesbianism and, 392–395, 394; loss and, 383, 385, 389; makeover and, 382–383, 388–389; masculinity and, 385–387, 386, 392–395, 394; normal pathology and, 333, 389; pink-ribbon and, 384; racism as internalized and, 333, 382; rebirth/reborn and, 333, 383–384; self-improvement and, 333, 382, 387–388, 388; semiotics/semiotic square of breast cancer and, 383, 386–387, 395–396, 396; skin-deep beauty and, 382, 384, 395; statistics and, 383, 396n3; suffering and, 333, 383; symbolism and, 383, 385–386, 389, 395–396, 396; touch/

haptic and, 390; the unconscious and, 385; vulnerabilities and, 388 Coulter, Ann, 205 counseling, in TB clinics, 234, 236 court cases, and sexual assault victims, 289–291, 295 Crapanzano, Vincent, 489 creation/destruction of embryos, and assisted conception, 68–73, 77–78 cremation, and normative death, 650, 654, 657–658 Crenshaw, Kimberle, 544 cruelty, 30, 346–349, 351, 432–433 cure: DOTS TB program and, 163, 237–238, 244; healers/healing and, 332, 370, 378; HIV/AIDS and, 218; hospital institutions and, 710n17; humanity and, 162; institutions and, 161, 710n17; law/s and, 161, 164; MDR-TB and, 244; medicine/medical technologies and, 161; pharmaceuticals and, 161; recovery from disease and, 164, 270, 274, 280, 283–284; risks and, 14; scientific knowledge and, 3, 5. See also healers/healing; recovery Da Col, Giovanni, 616n16 Dalai Lama, 599–603, 607–608, 615n9 dance, and mental illness, 518–520, 522–523 Dandouau, André, 644n17 Das, Veena: Bhopal disaster in 1984 victims compensation, 772; bodying/bodied forth, 299n4, 703; deaths and valuation of lives, 560; ethical subjects, 477, 731; eye and observation/weeping, 707; healing and death, 733; inside and outside as “stitched together,” 484; loss and everyday life, 489–490; mourning, 501; naturalness and everyday life, 3; numbers/enumeration and self-immolation, 618n28; ordinariness of everyday lives, 610; “ordinary ethics,” 601, 604, 610; pain and language, 612; space between law/s and violence, 102; suffering, 476–477, 480, 494; violence victims, 772; voiced/unvoiced effects, 30, 202n17, 476–477, 480; witnesses of violence, 501; women’s words and violence, 30, 202n17 Daston, Lorraine, 780 Davis, Geoffrey, 135

deaf community and activism, 9–11, 164, 446 death: overview of, 623–628, 635, 641–642, 644n14; abortion and, 643, 645n32; addiction and, 317, 319–320, 327n1; al-Qireyne in refugee community and, 143, 149–150, 152; ancestors and, 635–636, 639–640, 643, 644n3, 645n22; animation/ de-animation/reanimation and, 623, 630–631, 643, 644n8, 645n29; anticolonial revolt of 1947 and, 732; bad, 447, 568–569, 656; banana tree model and, 635–636, 644n17; being/to be versus, 630, 644nn3–4; binary oppositions and, 630, 634, 641, 644n7, 659; biotechnologies and, 67–68; body/ies and, 631, 644n9; brain death and, 419, 424–428; cemeteries/ burials and, 635–640; Christianity and, 632–633, 637, 641–642, 645n25; coins and, 634, 637–639, 645n19; colonialism and, 431–433, 435–436, 438; combat-injured soldiers’ rehabilitation and, 399, 406–407; cosmetic surgery after breast cancer and, 333, 383–385, 387, 393, 395; death/rebirth cycle and, 651–652, 658–659, 660n2, 732; Dinkas of southern Sudan and, 632, 634; dying and, 625, 698, 701–702, 706–708, 709n9; embodiment and, 17–18; ethics of survival in nursing home and, 698, 706–707; experience of, 629–630, 644nn5–6; functionalism and, 630; ghosts and, 643, 644n2; gifts and, 632–633; good, 67, 447, 568–569, 623, 625, 649–651, 701, 707; good/bad, 447, 568–569; half-life/ half-death cycling and, 635–640, 635–641, 643, 645n24; healers/healing and, 332, 347–349, 368–378, 733; health insurance and, 270, 284; Hinduism/Hindus and, 633; historical narratives and, 732; HIV/ AIDS and, 162–163, 217–218, 221–222, 227, 229n9; humanity and, 17–18; individuality and, 17–18, 641; individual/ world relation and, 472; institutions and, 162–163, 623; Islam and, 632–633, 635, 637, 642; knowing/knowledge and, 629, 634, 643; life/zone between two deaths, 501–502, 504, 507; little deaths and, 68, 70–74, 77, 79; loss and, 445; making live/ letting die and, 627, 714; materiality and,

INDEX

•

83 9

death (continued) 631–634, 637–638, 640–641, 643, 645n27; mediation forms and, 624, 629–630, 643, 644n2, 648–651; mental health/illness and, 523; mind, body, soul or Geist, Körper, Seele and, 640–641, 645n25; modernity and, 68, 79, 628, 635; moon model and, 635–636, 643, 644n17, 645n19; mortuary and, 629–630, 644n2, 645n22; mourning/ mortuary and, 635–640; myths and, 623, 629, 634–636, 635–636; nutrition and, 635; organ transplant programs and, 421, 424–428, 643, 645n32; performativity and, 623, 631, 634; personhood and, 641; pleasure-in-inflicting-pain-and-, 347–349; police violence and, 494, 496–497, 500–501, 500–502, 500–504, 507; poverty and, 635; psychosocial treatment programs and, 302–304, 308–309; rebirth/reborn and, 633, 636; recovery from disease and, 165; reincarnation and, 640–642; religions and, 630, 632–633, 635, 637, 642; reproductive health and, 64; right-to-health litigation and, 251, 285n15; rituals and, 623, 630, 632–635; sacrifice and, 623, 631–634, 633, 636, 639, 645n22; self-immolation and, 448, 599–600, 602–604, 607, 610, 613–614, 616n12, 616n15; shame and, 681; situation relation to event and, 559, 570; souls and, 631, 640–641, 645n25; spirit and, 634, 635–641, 636–638, 641–642; “standing persons” coins or tsangan’olo and, 637–639, 645n20, 645n23; sublunary and, 636, 643; suicides and, 712–715, 719–721, 724, 725; survival and, 500, 626, 731–734, 740n2, 740n6; Switzerland and, 640–643, 645n24; symbolism and, 638, 640, 671, 709n12; temporality/ies and medicine/ medical technologies and, 656–657; thick description and, 637; valuation of lives and, 560, 634, 644n12, 770–771, 773–778; virtue/virtuous deaths and, 448, 602–604, 610, 613, 616n12, 616n15; visible/invisible and, 636, 638, 643; vitalism versus, 631, 644n9; vitality and, 633–635, 644n9; youth/death relation and, 626, 627, 750, 751–754, 757, 760–761, 763, 767n26, 767n27. See also dying; normative death

840

•

INDEX

death and rebirth cycle (sam ˙ sāra), 651–652, 658–659, 660n2, 732 debris (material bits), and colonialism, 431–432, 434, 437–438 de Certeau, Michel, 303, 377, 450, 731 De Costa, Ayesha, 48, 50 “defamiliarization” (ostranenie), and youth/death relation, 743–744, 763 Degnen, Cathrine, 726n13 Deleuze, Gilles, 30, 347, 352n4, 449, 452, 512, 517–518, 594, 653 Delvert, Jean, 729 dementia, age-related, 535–537 democracy (politics of democracy), 301–304, 306, 311, 350–351, 352n7 Deng Xiaoping, 221–222, 225 Denny, Frederick, 379n3 Derrida, Jacques, 101, 349, 701, 706–708, 709n8 Descartes, René, 356, 362, 364n3 desires, 5, 28, 41, 83–85, 87, 91–97, 126, 140, 143, 153, 318, 324–325, 724 Despret, Vincaine, 180 de Swaan, Abraam, 697 detainees (al-asra’), and loss, 444, 475–476, 478–480, 483–490 development (economic development), 115, 118–120, 124, 221, 227–228, 432–433, 438 Devereux, Stephen, 578 de Waal, Alex, 578 diagnosis, 191–192, 201n2, 201n5, 218–219, 236, 244, 246 Diderot, Denis, 680 disabilities: overview of, 446, 536–537; abortion and, 530–531; ADA and, 413n9, 554n1; ARTs and, 529–530; ASDs and, 9–12, 164, 446, 535; Ashley Treatment and, 529; assisted suicide and, 525–526; autonomy/ self-autonomy and, 529, 534; bioethics and, 529; biopolitics and, 526; biotechnologies for reproduction and, 529–530, 537n2; cancer outpatient facility and, 694–695; care/caregiving and, 413n2, 529, 531, 533–536; children and, 525–526; citizenship and, 525–526, 536; combat-injured soldiers’ rehabilitation and, 405, 412, 413n4, 413nn9–10; commodification and newborn babies and, 528, 530–531; communities

and, 446, 529, 531–533, 537; deaf community and activism and, 9–11, 164, 446; dementia and, 535–537; disability rights movement and, 12, 446, 525–529; discrimination against, 525, 527; equality and, 534; equality/inequality and, 534; ethics and, 413n2, 529–531; eugenics/ neoeugenics and, 526–532; euthanasia and, 525–526; family and, 446, 527–529, 531–534; feminism and, 529–530, 534; futurity and, 532, 536–537; genocide in Nazi Germany and, 527; HOMP and, 77; humanity and, 527–528, 531, 534, 536; identity and, 446, 533, 536; infanticide and, 526, 528; institutions and, 528; IVF and, 536; IVoC and, 534–535; justice/ injustices and, 533–534; kinship imagining/ reimagining and, 526–529, 531–534; life and, 413n4, 446, 526–529, 534–537; longevity and, 534; long-term life support and termination and, 526, 537n1; loss and, 531; materiality and, 544, 554; medical model and, 526–529; modernity and, 526–527, 529, 532, 536; motherhood and, 528–529, 536; NDY rights group and, 525–526, 528–529; NIPT and, 530, 537n2; normativity and, 446, 527–528, 532–533; personhood and, 413n2, 528; prenatal tests and, 525, 529–532, 537n2; public space and, 525–529, 531, 533–535, 537; social issues and, 11, 532; statistics and, 526–527, 535–536; survival and, 532, 534; symbolism and, 10; Tay-Sachs disease and, 531–532; visible/invisible and, 525–526, 535 Disability Rights Education and Defense Fund (DREDF), 529 Disaster Mortuary Operational Response Team (DMORT), 562, 568 discrimination: against disabilities, 525, 527; health insurance and, 270, 284; HIV/AIDS and, 222, 256; homophobia and, 327n7; marginalization and, 185, 190, 421–422, 429n7; racial health disparities and, 543–545, 548, 551–552, 554n1; racism and, 6, 213, 327n7, 333, 382; right-to-health litigation and, 256–257. See also racial health disparities

dismounted complex blast injuries (DCBIs), 406, 414n11 disorder, and youth/death relation, 754–757, 766nn23–24 displacement experience, and police violence, 502–506 Diwan, Bishal, 48, 50 Doctors without Borders, 581 documentation, 101–102, 104–106, 108–110, 112n4, 384, 662–663 Dōgen, 1 Donne, John, 343–344 Donzelot, Jacques, 104 DOTS TB program: overview of, 163, 232–234, 236, 245–246; chemotherapy and, 236, 239, 247n4; clinic and, 233–236, 238, 241–242, 244–246; cure rates and, 163, 237–238, 244; diagnosis and, 236, 244, 246; disease control and, 232, 236, 245; DOTS-Plus and, 242–244; drugs and, 162–163, 232–234, 233, 236–242, 244–246, 247n4, 248nn6–7, 249n9; historical narrative for, 233, 236, 239; marketization and, 162–163, 232–233, 239–242, 245–246, 248nn6–7; MDR-TB and, 232–235, 241–247, 247n1, 248nn6–7, 249n9; methodology and, 163, 232, 236–237, 239, 246, 247n2; NTP and, 236–237; pharmaceutical industries and, 163, 232–233, 237–242, 246, 248nn6–7; private practitioners and, 232–233, 235, 237–238; stigmatization and, 235, 238; WHO and, 163, 232–233, 239–240, 244, 246 Doty, Mark, 97n3 dream (reverie), 143–144, 148, 153–155, 334–335, 432–438, 625–626, 712–713, 719–721, 725, 734, 738 Dreze, Jean, 578–579 Dube, K. C., 513–514 duCille, Michelle, 414n13 ductal carcinoma in situ (DCIS), and cosmetic surgery, 387–389, 392–395, 394, 397n14 Dumit, Joseph, 545 Durham, Deborah, 752 Durkheim, Émil, 423, 612 dying: overview of, 623–625, 623–628, 696–697, 708, 708nn2–3, 709n13, 709n16, 710n17; agency and, 706; anger

INDEX

•

841

dying (continued) about, 625, 699–700, 703, 707; autonomy/ self-autonomy and, 700, 706; bereavement and, 696, 698–699, 709n6; bereavement counselors and, 696–697, 699–700, 707; the body/ies and, 625, 698, 700–703, 705–707, 709n5, 709nn10–12; bodying/ bodied forth and, 703; bureaucracy and, 698; cancer and, 162, 189, 196; care/ caregiving and, 624–625, 697–708, 709nn10–12; communicability/dying from Katrina and, 447, 560, 567–568, 572nn16– 17; communication and, 703–704, 707, 709n14; communities and, 703–707; death and, 625, 698, 701–702, 706–708, 709n9; embodiment and, 705, 707–708; ethics of survival and, 698, 706–707; euthanasia and, 697, 709n4; finitude and, 698, 700, 708; flesh/fleshy and, 698, 708; funerals and, 703; futurity and, 706; good death and, 625, 701, 707; hope/hopelessness and, 625, 697–699, 704–706, 709n5; hospice movement and, 697, 709n4; humanity and, 625, 706; identity and, 703; illness and, 698, 703–705; infantalization and, 705, 707, 709n15; institutions and, 623; intimacies and, 624, 702–703, 710n19; Katrina hurricane and, 447, 560, 567–568, 572nn16–17; language and, 700, 703, 707–708; laying out the body/ies for undertakers or afleging and, 701–702, 709nn10–12, 710n19; life and, 30, 45, 706; loss and, 700, 703, 705–707, 706; moral rebirth/reborn and, 706; normative death and, 648, 649–652, 654–655, 660n2; normativity and, 625, 698, 704–706; nurses and, 625, 697–699, 701–702, 704–708, 709n10, 709n16; observation of, 700, 707; observation of dying and, 700, 707; order and work culture and, 625, 696, 704–708; pain and, 697, 700; pain management and, 697; palliation and, 697; personhood and, 704–706; psychologists and, 700, 709n16; secular body/ies and religions and, 708; self and, 697, 700, 703, 705–707; social issues and, 624–625, 698–700, 703, 706–707; social workers and, 625, 696, 699, 709n16; spaces/

842

•

INDEX

places and, 700, 706; suffering and, 698, 705, 707–708; temporality/ies and, 698, 705, 706; touch/haptic and, 625, 698, 700, 704–705, 708, 709n8, 710n19; vitality and, 700; waiting in clinics and, 168; world wars and, 699, 709n7. See also death; normative death economic development, 115, 118–120, 124, 221, 227–228, 432–433, 438 economic insecurity, 14, 164–165, 292, 296–298, 299n2, 465–466, 666, 669, 729–730, 740n1 educational achievement, and racial health disparities, 543, 549–554 ego, 385, 654–655 el-Badry, M. A., 786, 807 Eldegez, Uluğ, 425 elders, and Katrina-related deaths, 559, 563, 570n1 electroconvulsive therapy (ECT), 517 Elvey, Anne, 708 embodiment: cancer and, 194–195, 198–199; citizenship and, 403; death and, 17–18; dying and, 705, 707–708; healers/healing and, 368–370, 373, 376–377; hunger and, 580; hypochondria and secular body/ies and, 339; Katrina-related deaths and, 569–570; loss and, 444, 482; mental health/illness, 519, 523; personhood and, 15, 304; psychosocial treatment programs and, 303, 309–312; secular body/ies and, 339; self-immolation and, 448, 604, 610–611; social, 198–199; suicides and, 724; women and loss and, 445; youth/ death relation and, 763. See also body/ies emotion present, making an (rasa), 95–97 employment: hunger an, 582–584, 586, 591, 595n6; individual/world relation and, 444, 463, 466–468, 473; parolees/ex-offenders and, 294, 299n3; racial health disparities and, 543, 546–552; risk and, 14, 164–165, 296–298; sexual assault victims imagining recovery and future, 164–165, 290, 292–298, 299n2 endurance (sumoud), and loss, 444–445, 477, 486–488 Epstein, Steven, 13

equality/inequality: adoptions and, 103, 107–108; disabilities and, 534; earthquake in 2010 relief and, 313; expert knowledge and disease/death and, 162–163; HIV/ AIDS and, 162–163, 217, 221–222, 227, 229n9; institutions and, 162–163; marketization and, 162–163; (neo) liberalism and, 12; racial health disparities and, 544; right-to-health litigation and, 162–164, 257, 262–263; schizophrenia and, 210; secular body/ies and, 350; valuation of lives and, 627, 770–778, 780–781; waiting in clinics and, 167–168, 178–180, 182n15. See also justice/injustices Esler, Ebru, 420–421, 429n2 ethics: addiction and, 318, 323, 325, 328n8; adoptees and, 115–116, 121–124; bioethics and, 47, 68–71, 529; brother-sister incest and shame and, 86–87; disabilities and, 413n2, 529–531; ethic of palliation and, 182n16, 186, 190; Islam and, 145; memory and survival, 502, 706; obligations and, 271–273, 275–280, 285n14; organ transplant programs and, 630, 644n8; politics/political power/secular authority and, 443, 447–448; recovery from disease and, 270–273, 275–280, 282–283, 285n14; reproductive health and, 47; self-immolation and, 447–448, 601, 604–614, 618n28; subjectivity/ies and, 444, 477–478, 731; survival and, 732–733, 739; survival in nursing home and, 698, 706–707; survival of HIV/AIDS patients and, 502; valuation of lives and, 627, 770–771, 773, 777–778, 781; youth/death relation and, 743, 757, 760–762, 763 ethnographic museum, and healers, 375–377 eugenics/neoeugenics, 526–532 euthanasia, 525–526, 697, 709n4 event and situation relation, 5, 27–29, 334–335, 432–434, 436–437, 559, 570 everyday life (quotidian experience): overview of, 1–3, 16, 26–31; addiction and, 317–318, 323, 327n5; al-Qireyne in refugee community and, 144–145, 148–149; cancer outpatient facility and, 675–676, 686–687, 691–692, 695; conversations and, 497–500, 506; disabilities and, 446, 534;

hunger and, 447, 576–578, 587–588; individual/world relation and, 444, 465–468, 471–473, 473n1, 473n3; laughter and, 87–88, 95–96; lonely deaths of elders and, 663, 669; loss and, 444–445, 476, 482, 487; mental health/illness, 445, 510–512, 514, 518, 520, 522; organ transplant programs and, 419–420, 423, 427; police violence and, 493, 495–504, 506–507; psychosocial treatment programs and, 165, 301–306, 312; racial health disparities and, 446, 545, 548, 552–553; reproductive health and, 47, 64, 68–70; self-immolation and, 447–448, 601–602, 604–612, 615n9, 616n11, 617n22; sexual assault victims and, 164, 289–292, 295, 298–299; situation and event relation and, 30; suicides and, 713–716, 718–719, 721–722, 725, 725n8; survival and, 626, 730, 734, 736–738; valuation of lives and, 772; vulnerabilities and, 28–29, 33n13; youth/death relation and, 753, 767n27 evidence-based knowledge, 102, 104, 111, 143, 145, 257, 446, 543–546, 548, 554, 555n9, 600, 604–606, 617n22 evolutionary paradox, 361–362 exceptional-medicines program, 252–253, 256, 258–264, 262 excess mortality rates: excess female mortality rates and global SRM and, 563, 571n10, 628, 779–780, 786, 793–802, 794–802, 818n3, 818n11, 821n14; excess male mortality rates and global SRM and, 628, 789–790, 793, 801–802, 803, 804, 808–811, 818n11; Katrina-related deaths and, 447, 560–566, 570n1, 571n10; missing girls/sex selection at birth statistics and female, 563, 571n10, 628, 786, 818n3 existence and identity relation, 9–15, 32n6, 164 expectations (horizons of expectation), and colonialism, 431–433, 437–438 experiences: cancer outpatient facility and, 625, 692; death and, 629–630, 644nn5–6; dream/reverie and colonialism and, 334–335, 432–438; observation of dying, 700, 707; pain and, 700; patients and waiting in clinics and, 169–176, 181nn9–11; police violence and displacement and,

INDEX

•

843

experiences (continued) 502–506; respite and colonialism and, 335, 433–434, 437; spaces/places and, 431–434, 436–438 experimental therapies, 164, 273, 277–280, 285n16 exposed (expósitos) status, 106–107 expulsion/eviction dream/reverie, and colonialism, 334–335, 434–438 extensively drug-resistant tuberculosis (XDR TB), 246 Fabian, Johannes, 623 Fagot-Largeault, Anne, 566 fall out of the world, 444–446, 448, 470–471, 473, 507. See also “not-at-home” family: adoptees and, 115, 119, 121–123; adoptions and, 102–104, 107–108, 110; brother-sister incest and, 86–87, 90, 93, 98n5; disabilities and, 446, 527–529, 531–534; familial loss and, 332, 368; family corporate capitalist system and, 665–666, 669, 672n3; family-planning programs and, 48, 49, 52–53, 60–61, 131, 135; intergenerational conflict and, 626, 754–761, 764, 766nn24– 25; older women’s/relatives’ role and, 54–55, 57, 59, 61–63; parental rights and, 106, 109; refugee community residence and, 145–148; as symbolic capital, 55–56; valuation of children and, 41. See also kinship family residence (dar), and al-Qireyne in refugee community, 145–148 Farmaian, Abou, 342 Farr, William, 788–789 fashioning/unfashioning, 121, 149, 254, 652–655 Fassin, Didier, 4, 14–15, 291, 325, 502, 706 fear, and al-Qireyne in refugee community, 147–148 Federal Bureau of Investigation (FBI), 209, 212–214 Feierman, Steven, 201n4 Fein, Deborah A., 535 Feinberg, Kenneth, 772 femininity, and cosmetic surgery after breast cancer, 382–385, 387–389, 392–395, 396n4. See also masculinity feminism, 130, 132–134, 529–530, 534

844

•

INDEX

Feminist Response in Disability (FRIDA), 529 fertility/infertility: fertilization and, 41, 76; genetics and male, 80n2; hijras and, 84–91, 95–97; IVF and, 41, 68–74, 76–79, 80n2, 140; men and, 73–79, 80n2; women and, 41, 68–74, 76–79, 80n2, 144–145 festive zone, and colonialism, 334–335, 432–434, 437–438 fetus, 72, 76–79, 80n1, 332, 359–360 finer/coarser tastes in grains (grain hierarchies), 447, 587–588, 591–594, 596n10, 596n12 finitude, 18, 29, 342, 350, 698, 700, 708 Fischer, Andrew M., 617n23 Fischer, Michael, 32n3 fixed dose combinations (FDCs), 239 flesh/fleshy, 299n4, 326, 382, 384, 395, 399–401, 403–408, 411–412, 413n9, 698, 708 flirting and seduction of men, by hijras, 83–86, 88 food, 447, 576–578, 581, 584, 586–594, 596n10, 596n12 forced pregnancy, 130, 133–134, 138. See also pregnancy Fordyce, David, 348 forgetting, 291–292, 311–312. See also memory (remembering) forgive/forgiven, 25, 422–423, 428 form/s of life: combat-injured soldiers’ rehabilitation and, 334, 400, 403, 407–408, 413n4; continuity and, 43; disabilities and, 413n4; dying and, 30, 45; everyday life and, 3, 23, 26, 45; experience and, 19; forgive/forgiven and, 25; form and, 3, 24; fragility of the body/life and, 3–4, 28–29, 443; given/givenness and, 23–24; grammar and, 24, 26; heterogeneity and, 10, 22; “invented natural history” and, 26, 42; language and, 3, 10–11, 21–29, 32n3, 334; life and, 3, 24; loss and, 476, 480, 489–490; milieu and, 45; “newness” and, 2; nonhuman life and, 148, 178, 332; ordinary expression versus conceptual schema and, 3, 33n12; self and, 12, 30; situation and event relation and, 5, 27–28; social issues and, 3–4, 21, 23; sublunary,

636, 643; vitality and, 3–4; waxing and waning and, 3–4, 30–31, 331, 448 Foucault, Michel: biopolitics, 4, 253–254, 545, 713–714; biopower, 4, 254, 713; confessional therapeutics, 305; ethical substance, 328n8; finitude, 18; “governmentality,” 53; government frugality and markets versus justice, 253–254, 265; grammar, 725nn1–2; individuality and pathological, 17–18; institutions and modernity, 551; making live/ letting die, 627, 714; (neo)liberalism, 253–254; pastoral power, 305, 531; population management, 161; racism and bricolage, 6; sadism, 346; security and population, 5–6; sex and better off dead, 413n3; “thick natural phenomenon” and population, 5; universal of desire, 5 Fox, Renée, 424 fractionation (plasma-fraction) industry, and HIV/AIDS, 163, 217, 220–224, 228n1, 229n8, 229n13 fragility of the body/life, 3–4, 28–30, 165–166, 443, 527 Frank, Arthur, 465 Frazer, James G., 633 Freud, Sigmund, 29, 33n13, 385, 396n4, 479, 482, 717 fucking, and hijras, 84–85, 87–88, 93–97, 97n3. See also copulation Fullwiley, Duana, 32n8 functionalism, 198, 286n18, 630 funerals: Botswana and, 752; dying and, 703; individual/world relation and, 472; Katrinarelated deaths and, 569–570; normative death and, 650, 652, 654, 657–658; police violence and, 494–495; psychosocial treatment programs and, 308; public space and, 752; youth/death relation and, 744, 748, 750, 754–757, 756, 760, 766n21, 766n24, 767n26 futurity: addiction and, 318–321, 324–325; colonialism and, 431–438; disabilities and, 532, 536–537; dreams and suicides and, 714–715; dying and, 706; law/s and adoptions and, 101, 104; loss and, 318–321, 324–325; police violence and, 501–502; recovery from disease and, 273; sexual assault victims imagining recovery and,

164–165, 290, 292–298, 299n2; suicides and, 721, 723, 726n14; survival and, 730, 732; youth/death relation and, 627, 761–762. See also hope/hopelessness; reproductive future/s gay community (homosexuality), 327n7, 392–395, 394, 413n7 Gayon, Jean, 32n9 Geertz, Clifford, 102, 108 gender: addiction and, 322–323, 327n7; adoptees and, 115–116; adoptions and, 111; al-Qireyne in refugee community and, 145, 153; brother-sister incest and, 90; combatinjured soldiers’ rehabilitation and, 334, 399–400, 402–403, 406; cosmetic surgery after breast cancer and, 333, 383, 385, 393–394, 396n4; hijras and, 83, 91; medical costs and, 685; sexual assault victims and, 165, 297–298; sexual contract and, 297–298; sexual/reproductive violence and, 130–132; valuation of lives and, 627, 772, 781; violence and, 30, 116, 122, 130–132 genetics, 75–76, 80n2, 261–262, 262, 273, 282–284, 363 genitals, and combat-injured soldiers’ rehabilitation, 400, 403–406, 413n10, 414n12 genocide/postgenocide, 526–527, 536–537, 736 Ghani, Ashraf, 676–677 ghosts (spectral), 2, 30, 479, 490n1, 643, 644n2, 652, 659–660, 730, 732, 737 gifts, 319–321, 424, 429n2, 429n5, 632–633, 667 given/givenness, 4, 23–24, 41, 444, 464–466, 470 Glaser, Barney, 697 global discourse: bioethics and, 70–71; biotechnologies of reproduction and, 14, 69–71, 79–80; care/caregiving and, 753; clinical trials and, 14, 164, 263–264, 271–278, 281–284, 285n9, 285nn12–14, 687; evidence-based knowledge and humanitarianism and, 600; experimental therapies and, 164, 273, 277–280, 285n16; export/import of blood products and, 223, 229n10; grain hierarchies and, 593–594,

INDEX

•

845

global discourse (continued) 596n12; Green Revolution and, 588; health care rankings and, 779; local versus global biologies and, 185; medical costs and, 780; middle-income countries and, 60, 627–628, 785, 788, 807; North-South divide and, 14, 186, 776; pain/pain management and, 185, 189–190; palliation marginalization and, 185; pharmaceutical/ biomedical markets and, 255; population control/management and, 139; recovery from disease and, 164, 271–276, 280, 284, 285n12; self-immolation and, 600, 616n10, 762; stem cell biotechnologies and, 14, 69–71; TB and, 239, 244; water (shortages) relation to food and, 594. See also sex ratio of mortality (SRM) Global Fund against AIDS, Tuberculosis and Malaria (GFATM), 239–240, 245 Goedefroit, Sophie, 635 Goldstein, Kurt, 16–17, 19 “gone mad” (majnooneh), and loss, 484, 488 Good, Byron, 698 “good” and “bad” breast, 333, 383, 385–391 good death, 67, 568–569, 623, 625, 649–651, 701, 707. See also bad death; death Goodfellow, Aaron, 51, 477 Goodman, Steve, 693 “good science,” and global clinical trials, 14 Gorringe, Timothy, 340 Gould, Sara, 644n17 Graburn, Nelson, 725n4 Graeber, David, 461n8 grain hierarchies (coarser/finer tastes in grains), 447, 587–588, 591–594, 596n10, 596n12 grammar, 24, 26, 331, 333, 339–340, 351, 424, 481, 490, 512, 519, 715. See also language Graunt, John, 778 Gray, Kevin, 173, 176 Greece, ancient, 652, 773 Green, James W., 67 Greenhough, Paul, 579–580, 584 Green Revolution, 580, 588–591 Greimas, Algirdas J., 386, 395 grief, 479, 486–487, 490n1, 494, 497–498, 506–507, 568–569, 652, 664, 668 Gross, Terri, 405

846

•

INDEX

guardian spirit (neak ta), and survival, 737–739, 740n16 Guattari, Félix, 30 guilt, 71–72, 116, 119, 303, 308–309, 311, 496–497 gun violence, 162, 205–206, 212–213 Gupta, Akhil, 107 Gupta, Sanjeev K., 50 Guyer, Jane I., 182n18, 229n13 Gyalsten Yolmo, Karma, 651–653 Gyatso, Janet, 599 Haberal, Mehmed, 424–426 hack taxi drivers, and sexual assault victims, 164–165, 296–298 Hage, Ghassan, 9–10 Halbwachs, Maurice, 627, 771, 777, 781 half-life/half-death cycling, and death, 635–640, 635–641, 643, 645n24 Halpern, Joel M., 717, 725nn5–6 Hammond, Elizabeth, 387–388, 388 Han, Clara, 30 Hansen, Kathryn, 132 happiness, 119, 121, 382, 392–393 haptic (touch), 199, 325–326, 390, 400, 406, 408–412, 625, 698, 700, 704–705, 708, 709n8, 710n19 Harris, Sam, 341 Hart, Keith, 638 Harvard University study on Katrina survivors, 561–562, 571n8 Hastrup, Kirsten, 579–580 Havel, Vaclav, 776 healers/healing: overview of, 331, 332–333, 337, 351, 378, 444–448, 642; addiction and, 165, 319, 322–323; aesthetics and, 349, 374–375; agency of politics/political power/secular authority and, 333, 371, 379n4; alchemy and, 642, 645n27; Alevism and, 372, 379n2, 379n8; belief/secular belief and, 340–342; biopolitics and, 331, 340, 370; the body/ies and healing rituals and, 333, 371–372; “breath” or nefes and, 370–375, 377, 379n2; cancer and, 187, 195, 199; care/ caregiving and, 18, 30, 176, 368; cemeteries/burials and, 151–152, 367–370, 370, 370, 375, 376; Christianity and, 337, 340–341, 343–344, 349–350; Christian prayers and,

642; clinicians power/powerlessness and clinical trials and, 271–273, 282–283; clinics and, 332, 368; collective identification and, 350; colonialism and, 433–436, 438; communities and, 726n13; compassion and, 348, 350; continuity and, 342, 376; cruelty and, 346–349, 351; cures and, 332, 370, 378; death and, 332, 347–349, 368–378, 733; democracy/politics of democracy and, 350–351, 352n7; disease/ event and, 18, 30; embodied subject and, 339; embodiment and, 368–370, 373, 376–377; equality and, 350; ethnographic museum and, 375–377; familial loss and, 332, 368; finitude and, 342, 350; grammar and, 331, 339–340, 351; health of population and, 369–370; healthy body/ies and, 331, 339, 351; homeopathy and, 642, 645n27; homicide of children and, 346; humanity and, 341–342, 344–346, 349–350; hypochondria and, 337–339, 343–345, 347, 349; hysteria and, 338, 344–345; immortalism and, 342; individuality and, 18, 33n11; individual violence and, 345–347; Islam and modernity and, 332, 367–369, 375–376; language/poetic speech and, 332, 370–374, 377–378, 379nn2–7; legitimacy/illegitimacy and, 332, 373; life and, 338–339, 342–343, 350–351, 376–377; loss and, 332, 368; materiality and, 338, 374, 376–377; medical education/knowledge and, 18, 33n11; medical knowledge and, 18, 33n11; mental health/illness, 513–514; modernity and, 332, 337–338, 340–345, 347–350, 368–370, 372–375, 378, 379n6; (neo)liberalism and, 337, 340–342, 345, 347, 349–350, 352n7; pain and, 331, 337–339, 342–344, 348; psychic and, 331, 340, 347; psychosocial treatment programs and, 165, 305, 312–313; Qur’anic, 332, 368; the real/unreal and, 339; religions and, 331, 338–339, 341–344; religious activities space or dergâh and, 374–376; sadism and, 345–347; saintly authority relation with political power and, 368, 370, 373–374, 377–378; saint or evliya and, 332, 367–368, 370–374, 377–378, 379n3, 379n5, 379n9; saints in modernity and, 373, 379n9; secular and, 332–333,

367–378, 378n1, 379n4; secular and politics/political power and, 339–340; secularism and, 369, 378n1; self and, 338, 340; sensibility and, 344–345, 348; sheykh in refugee community and, 146–147, 150–152, 154; sickness/sick body/ies and, 331, 342–343, 345–347, 351; social issues and, 347, 352n4; souls and, 343–344; spirit and, 332, 367, 372; subjectivity/ies and, 368–370, 372; suffering and, 332, 337–340, 344–345, 347–351, 368; sympathy and, 338, 345, 348; TCM and, 642; temporality/ies and, 368–370, 372–378; textuality and al-Qireyne in refugee community and, 148; therapy/therapeutics and, 332, 369–370; tomb or türbe of, 369, 375–376; torture and, 346–347, 349; tradition/s and, 342, 367–368, 370–372, 375–377, 379n3, 379n9; violence and, 346, 352n2, 368, 375; vulnerabilities and, 350; waiting in clinics and, 176; women and, 344–346; worldliness and, 342–345. See also cure; recovery health care: equality/inequality and, 779; global and, 753; health insurance and, 270–271, 279, 284, 285n17, 547, 680, 684–686, 780; public, 51–55, 58–59, 61–63, 64n1, 559, 564, 571n3, 628, 785, 805–806, 817, 821n14; racial health disparities and, 545–546, 554n4; rankings of, 779; reforms and, 50–52, 54, 58–62, 176, 182n13, 270–271, 547, 676, 687, 780; valuation of lives and, 778–779 health of populations, 7, 226, 369–370, 753, 785, 804–807, 817 Healthy People 2010, 545–546 Heidegger, Martin, 28, 465, 471–472, 652 hepatitis B, 220, 228n1 hepatitis C, 220, 228n1, 259–260 Herzfeld, Michael, 171 heterogeneity, 10, 22, 101, 137, 139, 392–393, 400–401, 403, 405–412, 413n7, 413n10, 414n14 high-order multiple pregnancy (HOMP), 77–78 hijab (“talisman”), and al-Qireyne in refugee community, 147–152 hijras: overview of, 42–43, 83–84, 97n1; aesthetics and, 95–96; asceticism and, 91, 94, 97; aspirations toward reproduction

INDEX

•

847

hijras (continued) and, 42, 83; calibration of relationship and, 86; care/caregiving and, 83, 95–96; carnality and, 42, 83, 86, 88, 93–96; contiguities and, 91–93, 95; death/dead babies and, 89–91; desires and, 83–85, 87, 91–97; etiquette and, 86–87; everyday life disruptions and, 87, 95–96; fertility/ infertility and, 84–91, 95–97; flirting and seduction of men and, 83–86, 88; fucking and, 84–85, 87–88, 93–97, 97n3; gender and, 83, 91; HIV/AIDS activism and, 83, 98n9; humanity and, 87–88, 94–96; incest and, 87, 94–95; ji ghabrana and, 95, 97; ji halka and, 95–96; khwaja and, 88–93, 95; laughter provocation by, 83–85, 87–88, 95–97; legitimacy/illegitimacy and, 83, 98n9; life/death and, 83–84, 89–92, 94–97; lovers relation with, 83, 85–86, 89, 92–93; myths and, 87–92, 95–97; obligations and, 91; performativity and, 84, 90–91; poverty and, 83, 95; pregnancy and childbirth question and, 83–84, 87–90, 91, 93–95, 98n8; queer/queerness and, 83; rasa and, 95–97; reproductive futurity anxieties and, 42, 83–84, 91–92, 94–95; risk and, 86, 94, 97; sadaa suhaagan and, 88–89, 91–93, 96, 98n8; sadness/joy sharing or sukh dukh and, 95–96; sexual differences/practices and, 83, 90–91, 97nn1–2; sexual pedagogy and, 85, 88, 93, 97; social issues and, 86, 88, 92; tradition or dastoor and, 86; visible/invisible and, 92 Hinduism/Hindus, 42, 54–55, 59, 61, 69, 73, 633 HIV/AIDS: overview of, 163, 217–220, 228, 228n5; “AIDS villages” populations and, 218–221; ARV drugs programs and, 185–186, 201n3, 218, 256; Botswana and, 186, 190; commodification and plasmafraction industry and, 163, 224–225, 229n13; cures and, 218; death and, 162–163, 217–218, 221–222, 227, 229n9; development and, 221, 227–228; diagnosis and, 218–219; discrimination and, 222, 256; economic resources and population and, 163, 217, 221–222, 229n8; equality/ inequality and, 162–163, 217, 221–222, 227,

848

•

INDEX

229n9; ethics of survival and, 502, 706; health-care rights and, 256, 263; health of population and, 226; hijras activism and, 83, 98n9; hope/hopelessness and, 706; household farming economy and, 217, 225–226, 229n14; hukou system and, 163, 222, 229n9; identity and existence relation and, 9, 12–15, 164; importation of blood products and, 223, 229n10; joy/felicity and, 706; justice/injustices and, 226; local township bureaucracies and, 226, 229n14; monetization and plasma-fraction industry and, 225; mortality rate and, 753; (neo)liberalism and, 221–222, 225; pharmaceutical rights and, 256; plasma-fraction industry and, 163, 217, 220–224, 228n1, 229n8, 229n13; political power and, 218, 222, 227; population control/management and, 163, 217, 218–219, 221–222, 229n8; poverty and, 221, 227–228; public-private interface in governmental institutions and, 256; rebirth/reborn and, 706; reproduction of household and, 163, 225; risk and, 220–221, 225, 229n7; secrecy and, 218–220, 222, 228n2; social issues and, 218, 262, 706; SRM and, 628, 784, 786, 788, 806, 817n1, 818n10; statistics and, 226–227; suffering and, 227; treatment programs for, 163–164, 256, 259; urban and, 222–223, 228, 229n9; viruses as living thing and, 358; vulnerabilities and, 163, 217, 221 Hojdestrand, Tova, 665 Holmes, James, 205 Holocaust, 526–527, 736 Holston, James, 263 homelessness, 548, 550–551, 665, 669, 671–672 homeopathy, and healing, 642, 645n27 homosexuality (gay community), 327n7, 392–395, 394, 413n7 Honig, Elizabeth, 117 hope/hopelessness, 42, 73–74, 76, 625, 666, 672, 697–699, 704–706, 709n5. See also futurity Hopper, Edward, 521–522 horizons of expectation, and colonialism, 431–433, 437–438 hospice movement, 624, 697, 709nn4–5

Hsu, Elisabeth, 645n24 humanitarianism: abolitionism and, 775; adoptees and, 116, 117–120, 122–125; al-Qireyne in refugee community and, 44; biopolitics and, 7; colonialism and, 435–437; critiques of, 2; evidence-based knowledge and global for, 600; human rights activism and, 130; human rights activism during conflicts and, 130; hunger and, 447, 577–578, 583–587; hunger and colonialism and, 577–578; politics and, 254; psychosocial treatment programs and, 165, 302–310; Rajasthan and, 595n8; sexual/ reproductive violence and, 136–139; suffering and, 2; UN and, 775–776; valuation of lives and, 627, 775–777, 781 Human Mortality Database (HMD), 787, 793, 800 human rights: advance directives and, 681; civil rights movement and, 162, 207, 209–213, 544, 552, 554n1; Declaration of Independence and, 346, 774–775; Declaration of the Rights of Man and, 346, 774; disability rights movement and, 12, 446, 525–529; health-care rights and HIV/AIDS and, 256, 263; homophobia and, 327n7; humanitarianism and, 130; loss and, 476, 479, 485; pharmaceutical rights and HIV/AIDS and, 256; psychosocial treatment programs and, 301–307, 309; reproductive rights and, 114, 130–134, 138–139; right to heal and, 270–271, 273; right to health and, 270–271, 273, 281, 284; right-to-health litigation and, 255; right to medicines and, 270, 273, 280, 284, 285n9; self-immolation and, 448, 600–601, 604, 608, 612–613, 617n22, 618nn28–29; valuation of lives and, 627, 774 Human Rights Fund (HRF), 304–310 Humphrey, Caroline, 27–28 Humphries, Jane, 804 hunger: overview of, 447, 576–577, 593–594; agriculture and, 447, 582–585, 588–591, 595n6; anthropology of, 578–580, 595n3; aspirations/aspirational and, 589, 591; caste hierarchies and, 581–582, 584–588, 591, 593, 595n9; embodiment and, 580; employment and, 582–584, 586, 591,

595n6; food shortages and, 447, 576–577, 581, 584, 589; grain hierarchies and, 447–448, 591–592; Green Revolution and, 580, 588–591; humanitarianism and, 447, 577–578, 583–587; life and, 447, 576–578, 587–588, 594; malnutrition/undernutrition and, 581–583, 595n7; modernity and, 577; nutrition and, 592–593; politics and, 577, 580; politics/political power and, 447, 581, 583–584, 586; poverty and, 583–584, 588–589, 591–594; public space and, 447, 576–578, 580, 581–582, 594; PUCL and, 581–582; social issues and, 447, 580, 582–585, 595n6; starvation and, 447, 576, 578, 581–583, 586, 592, 595n7; subjectivity/ ies and, 580; temporality/ies and, 576, 583, 594; “traditional” gathering/trading and, 582–584, 586–587, 593, 595n5, 595n9; vulnerabilities and, 584–585, 591; water (shortages) and, 447, 576–577, 586–587, 589–591, 593–594; waxing and waning and, 447–448, 591–592 Hunt, Lynn, 774–775 Hurd, Michael, 536 Hurricane Katrina, 2005. See Katrina-related deaths hypochondria, and secular body, 337–339, 343–345, 347, 349 hysteria, and secular body, 338, 344–345 identity: adoptees and, 118, 125, 127; al-Qireyne in refugee community and, 144–145; ASDs and, 9, 11–12, 164; biocitizenship and, 8–9, 32n6; biosociality and, 9, 32n6; collective identification and adoptees and, 118, 125, 127; cosmetic surgery after breast cancer and, 383–384, 392, 394; deaf community/ activism and, 9–11, 164; disabilities and, 446, 533, 536; dying and, 703; existence and, 9–15, 32n6, 164, 265; HIV/AIDS and, 9, 12–15, 164; immunology and, 355–357, 360–364; life/concept tension and, 450, 454–455, 459; normative death and, 648, 657–658; organ transplant programs and, 422, 427; post-identity politics and, 126; psychosocial treatment programs and, 302–304, 306–309, 313; racial health disparities and, 544; sexual/reproductive

INDEX

•

849

identity (continued) violence and, 139–140; youth/death relation and, 759, 761–763. See also collective identification idiosyncrasy in biology, 164, 273–274, 283–284, 675, 677 illegal/legal drugs, and racial health disparities, 542–543, 547–549, 552–553 illness: DOTS TB program and disease control and, 232, 236, 245; individual/world relation and, 465–466, 468–469, 472, 473n1; nursing home and, 698, 703–705; sick body/ies and, 331, 342–343, 345–347, 351; sick roles and, 272, 274–276, 278–279, 284n5, 285n16, 286n18 imagining/reimagining: antiautobiographies of adoptees and, 117–120; kinship and disabilities and, 527–529, 531–534; in late modernity, 68, 79; life and death as conjoined in late modernity and, 68, 79; poetic imaginaries of colonialism and, 433–438; poor birth mothers imagined as unfit and, 104–109; recovery from sexual assault and work/employment and, 164–165, 290, 292–298, 299n3 (im)possible lives of adoptees, 117, 120–121, 123–125 immortalism, and secular body, 342 immunology: overview of, 332, 354–355; agency of viruses and, 357–359; antibodies and, 358–363; associative recognition theory and, 355–356; autoimmune infections and, 360; Cartesianism and, 356, 362; evolutionary paradox and, 361–362; genetics and, 363; identity and, 355–357, 360–364; life and body/ies boundary and, 332, 354, 357; maternal-fetal relation and, 332, 359–360; nonhuman life and, 332; “nonself”/”foreignness” and, 332, 354–360, 362–363; repertoire paradox and, 361–362; risk and, 332, 360, 361–363; self and, 332, 354–357, 359–363, 364n3; stem cell biotechnologies and, 359–360; systemic network theory and, 355; viruses and, 332, 355–360, 362–363 improvised explosive devices (IEDs), and combat-injured soldiers’ rehabilitation, 401, 404, 406, 409, 411

850

•

INDEX

in-betweenness, and lonely deaths of elders, 664, 669, 671, 672 incarceration issues, 320–327, 547–548, 551–554 incest, 86–87, 90, 93–95, 98n5 indifference, 161–162, 168, 176–177, 272–273, 567 individual and world relation: overview of, 444, 463–464, 472–473; being-in-the-world and, 444, 465, 470–473; Cartesianism and, 465; continuity and, 472; death and, 472; economic/financial insecurity and, 465–466; everyday life and, 444, 465–468, 471–473, 473n1, 473n3; falling out of the world and, 444, 470–471, 473, 507; funerals and, 472; given/givenness and, 444, 464–466, 470; illness and, 465–466, 468–469, 472, 473n1; laughter and, 444, 467–468; ludic and, 466; “not-at-home” and, 444, 471–472; personhood and, 465; phenomenology and, 471–472; poverty and, 465–470; precarity and, 465–466; security and, 444, 464, 468; social issues and, 465, 470; violence and, 444, 465–466, 468; work/employment and, 444, 463, 466–468, 473 individuality: biopolitics and, 27; cancer outpatient facility and, 677, 692–694; combat-injured soldiers’ rehabilitation and, 399–400, 403; death and, 17–18, 641; fragility of the body/life and, 29, 33n13; healers/healing and, 18, 33n11; individual life story versus statistics and, 627, 770, 777; life and, 3, 15–20, 27, 32nn8–9; life in language and, 28; medicalization of dying and, 677, 692–694; milieu and, 3, 16–20, 27, 32n9, 625; natural and social mutual absorption and, 4; normative death and, 624, 653, 655; pain management and, 186–187, 189; pathology and, 17–18; police violence and, 493, 503, 506; psychosocial treatment programs and, 302–304, 307, 309, 312–313; right-tohealth litigation and, 164, 255, 257–258, 260, 263–265; self-immolation and suffering and, 448, 614; situation and event relation and, 27; some ones’ death in Katrina hurricane and, 447, 560, 566–567, 569; violence and secular body/ies and,

345–347. See also individual and world relation inequality/equality. See equality/inequality; justice/injustices infanticide, 526, 528 infantilization, 407–408, 705, 707, 709n15 infant mortality rate (IMR), 51, 63, 766n22, 821n14 infants (newborn babies), 42, 83–84, 89–92, 94–97, 149–150, 526, 528, 532 infertility/fertility. See fertility/infertility informed consent, for clinical trials, 14, 275–276, 281, 285n14 Ingold, Tim, 470–471, 513 insecurity and political violence (ensekirite), and psychosocial treatment programs, 301–304, 306–307, 309, 312–313, 314n2 institutions: addiction and, 165, 317, 322; cures and, 161, 710n17; death and, 162–163, 623; disabilities and, 528; dying and, 623; earthquake in 2010 relief and, 302, 312–313; health/administrative costs and, 251, 255, 257; hope/hopelessness in medical, 697, 709n5; law/s and, 161; modernity and, 551; pain and, 161; pharmaceutical spaces and, 161; publicprivate interface in governmental, 251–252, 255–256, 262; racial health disparities and, 543–545; recovery from disease and, 164, 271, 273–274, 278–280, 285n15, 285n17; reproductive health and childbirth in, 48–51, 54–59, 61–62, 64n1; right-to-health litigation and, 162–163, 251–252, 255–257, 262, 265; SRM and, 785, 804, 806, 817 insurgencies, and colonialism, 334–335, 432–433 Inter-Country Adoption Law (Adoption Law) of 1972, 136, 138, 140n6 intergenerational conflict, and youth/death relation, 626, 754–761, 764, 766nn24–25 intergenerational vortex of caretaking (IVoC), 534–535 International Criminal Court Statute (Rome Statute of the International Criminal Court), 130, 140n1 International Planned Parenthood Federation (IPPF), 134–135, 140n5 intersubjectivity/ies, 156, 309, 456, 460, 516, 518, 757–758. See also subjectivity/ies

intimacy/ies: addiction and, 165, 322; adoptees and public space and, 123; combat-injured soldiers’ rehabilitation and, 400, 403–412, 413n7; dying and, 624, 702–703, 710n19; lonely deaths of elders and, 624, 669–670; loss and, 476–477; mental health/illness, 445, 516, 522; police violence and, 496–498, 501, 506; sexual/reproductive violence and, 44; waiting in clinics and depersonalization of, 176; youth/death relation and, 743, 750, 757, 762 intracytoplasmic sperm injection (ICSI), 73–77, 80n2 in vitro fertilization (IVF), 41, 68–74, 76–79, 80n2, 536 Iraq war/postinvasion, 333, 401, 405, 413n8, 414n11, 565, 776, 784 Islam (Muslims): Abraham/Ibrahim’s ritual sacrifice, 418, 422, 632; adoption prohibition in, 73, 136; Alevism and, 372, 379n2, 379n8; as ASHA workers, 59; assisted conception and, 68, 73–77, 80n2; Bengal and, 131, 617n19; biotechnologies of reproduction and, 68, 73–77, 80n2; contraception and, 61; death and, 632–633, 635, 637, 642; ethics and, 145; female sterilization and, 60–61; healers/healing and, 332, 367–369, 375–376; ICSI and, 73–77, 80n2; law/s and, 133–136, 136–137, 138; life and death as conjoined and, 332, 367; male infertility and, 73–77, 80n2; martyrdom and, 479; MFPR and, 77–79, 80n3; modernity and, 149, 332, 367–369, 375–376; nationhood and, 133, 140; organ transplant programs and, 422–423, 425–426, 429n7; Pakistani political project and, 131–133; personhood and, 138–140; practices of, 131, 133, 139–140; Quran and, 145, 148–149, 332, 368; race and, 131; reproductive health and, 54, 57–61; sexual/ reproductive violence and, 133–136; stem cell biotechnologies and, 68; tradition/s in, 132–133; valuation of lives and, 773 Jackson, Michael D., 31n1, 472, 653 Jain, S. Lochlann, 382–383, 393–394 Jains, and death, 632 James, Deborah, 181n12

INDEX

•

85 1

James, William, 472 Janani Suraksha Yojana (JSY), 49–54, 57 Jaspers, Karl, 450, 454–455 Jefferson, Thomas, 775 Jews, 527, 531, 736, 773 Jewsiewicki, Bogumil, 762 Jodha, N. S., 580 Johnson, Harriet MacBryde, 528 Jones, Meredith, 382–383 Joseph, Miranda, 665 joy (celebration), 62–64, 95–96, 334–335, 431–434, 438, 706 justice/injustices: adoptees and, 115–116, 124–125; adoptions and, 101, 107–108; aspirations/aspirational and, 161, 165–166; aspirations for, 161; biopolitics and, 254; care/caregiving and, 30; civil rights movement and, 207; disabilities and, 533–534; fragility of the body/life and, 165–166; government frugality and markets versus, 253–254; HIV/AIDS and, 226; ideals of, 111; life and milieu relation and, 19; racial health disparities and, 544–545; right-to-health litigation and, 164, 254–255, 257, 263–264, 266; sexual assault victims and, 164, 290–292, 299; survival and, 735; valuation of lives and, 773, 780. See also equality/inequality “just living” everyday life, 164, 289–292, 295, 298–299 Kafka, Franz, 270, 277–279, 576–578, 580, 594 Kamal, Sufia, 132 Kant, Immanuel, 774 karma, 626, 653–656, 733–735, 740n4 Katrina-related deaths: overview of, 447, 559–560, 570, 570nn1–2, 571nn3–4, 571n6; affects and, 567–568; agency and, 559–560, 567, 570n2; biopolitics and, 567; blacks and, 559, 567, 569, 570nn1–2; CDC and, 447, 562, 564; class/es and, 559, 571n4; collective identification and, 570; continuity and, 570; DDH and, 562, 564; DHH and, 562, 564; DMORT and, 562, 568; dying from Katrina/communicability and, 447, 560, 567–568, 572nn16–17; Earth Institute of Columbia University and, 562; elderly mortality statistics and, 559, 563,

852

•

INDEX

570n1; embodiment and, 569–570; excess mortality rates and, 447, 560–566, 570n1, 571n10; experiential knowledge and, 447, 561–562; funerals and, 569–570; good/bad death and, 447, 568–569; grief and, 568–569; Harvard University study and, 561–562, 571n8; indifference and, 567; Katrina talk and, 560; kinship and, 569, 572n17; language and, 559–563, 565–567, 569; legitimacy/illegitimacy and, 563, 565–566; life and death as conjoined and, 447, 568–570, 572n17; local science of mortality rate statistics and, 447, 563–567, 572n11; memory and, 567–570; mourning and, 447, 569–570; numbers/enumeration and, 563; politics/political power and, 562–564, 571n10; poverty and mortality statistics and, 559, 567, 570n1; public health and, 559, 564, 571n3; scientific knowledge and, 447, 560–563, 565–566, 571nn7–8; situation and event relation and death and, 559, 570; some ones’ or individuals’ death and, 447, 560, 566–567, 569; spaces/places and, 447, 560, 565–567; statistical wars and, 560–563, 571nn7–8; suffering and, 568; suicidality and, 561–562, 567–568, 571nn7–8; suicides and, 447, 559–562, 571n4; survival of Katrina and, 559, 568, 569, 570n2; temporality/ies and, 447, 560, 565–567, 569; thick description and, 564; tradition/s and, 569–570; visible/invisible and, 569–570; vitalism and, 566; vulnerabilities and, 559; whites and, 559, 567, 569, 570n2; WHO and, 562 Kaufman, Sharon R., 273, 656 Keizer, Bert, 709n5 Keller, Eva, 644n17 Kelly, Tobias, 477–478, 486–487 Kendall, Laurel, 117, 119–120 Kessler, Ronald, 561–562 key act/s, 428 kidney transplant programs, 419–420, 424–425 Kidron, Carol, 736 Killick, Evan, 181n12 Kimbuta, André, 749 kinship: addiction and, 165, 317, 321–324, 327nn3–4; adoptees and, 115, 117–119,

121–122, 127; adoptions and, 102–111, 112n4; alleged parents and, 106, 108–110; al-Qireyne in refugee community and, 44, 143–145, 147, 150–151, 153–155; biotechnologies and reproduction and, 79; boundaryviolating flirtation and, 164, 294; combat-injured soldiers’ rehabilitation and, 401–403, 407–408; imagining/reimagining and disabilities and, 527–529, 531–534; incest and, 86–87, 90, 93–95, 98n5; Katrina-related deaths and, 569, 572n17; law/s and, 109–110; memory and, 121, 127; mental health/illness, 445, 511, 514–518, 520–522; natal alienation and, 303, 309; obligation of, 115; or al-rahim and al-Qireyne in refugee community, 144–145, 154–155; police violence and, 498–499; psychosocial treatment programs and, 303, 306–309; “talking to” and, 292–294; youth/death relation and, 744–747, 751–752, 754–757. See also family Kittay, Eva Feder, 12, 413n2, 533–534 Klaits, Frederick, 752 Klein, Melanie, 385–386, 396n4 Kleinman, Arthur, 31n1 knowing/knowledge: adoptions and, 102, 107, 109–110; death and, 629, 634, 643; experiential, 447, 552–553, 561–562; expert/ non-expert, 102, 161–163; scientific, 3, 5, 14, 447, 560–563, 565–566, 571nn7–8, 641–642, 725n7; suicides and, 715–716, 719–721 Koselleck, Reinhart, 431–433, 773 Kramer, Larry, 13 Król, Henryk, 276 Kübler-Ross, Elisabeth, 696–698, 703, 707, 709n6 Lacan, Jacques, 29, 33n13, 449 Landsman, Gail, 528 language: al-Qireyne in refugee community and pain relation with, 146–147, 156; cancer and, 186–187, 200, 202n17; dying and, 700, 703, 707–708; form/s of life and, 3, 10–11, 21–29, 32n3, 334; grammar and, 24, 26, 331, 333, 339–340, 351, 424, 481, 490, 512, 519, 715; Katrina-related deaths and, 559–563, 565–567, 569; loss and, 484,

486–489; organ transplant programs and, 422–424; pain and, 612; pain/pain management and, 186–187, 612; poetic speech of healers/healing and, 332, 370–374, 377–378, 379nn2–7; self-immolation and, 612; survival and, 734–735, 740nn7–9; touch/haptic and, 708. See also communication Lanza, Adam, 205 Lapierre, Wayne, 205 Laplanche, Jean, 156, 157n4 Larkin, Philip, 691 Latour, Bruno, 103 laughter, 83–85, 87–88, 95–97, 162, 188–189, 191, 196–200, 444, 467–468 Laugier, Sandra, 21, 26–30 Lavater, Johann Kasper, 382 law/s: overview of, 161–166; abortion law/s and, 134–135, 137–139; adoptions and, 101–103, 106–107, 106–108, 111, 136–139, 140n6; Americans with Disabilities Act of 1990, 413n9, 544, 554n1; cure and, 161, 164; evidence and, 102, 104, 111; Guardian and Wards Act of 1890, 136–139; Gun Control Act of 1968, 213; health care and, 164, 253, 257, 260–265; Islamic, 133–136, 136–137, 138; kinship and, 109–110; knowledge and adoptions and, 102–104, 107–108; location/ boundaries of, 102–103, 107; medicalization of dying and, 625, 680–681; (neo) liberalism/modern liberal state and, 161; normativity and, 110; Ordinance no. 5 of 1982, 136, 140n6; organ transplant programs and, 425–427; Patient Protection and Affordable Care Act of 2010, 270–271, 547; police violence documentation for case and, 501–503; recording/encoding truths and, 102; recovery from disease and, 271–272, 277–278, 281–284; right-to-health litigation and, 251, 253–259, 261–263, 265, 271–272, 277–278, 281–284, 285n15; sexual assault victims and, 289–291, 295; sexual/ reproductive violence and, 133–139, 140n5 Lawton, Julia, 706–707, 709n9 laying out the body/ies for undertakers (afleging), 701–702, 709nn10–12, 710n19 Leach, Edmund R., 632–633 Lear, Jonathan, 29–30

INDEX

•

85 3

Leavitt, Stephen C., 486, 489 legitimacy/illegitimacy: adoptions and, 101, 110–111; biolegitimacy and, 7–8; healers/ healing and, 332, 373; hijras and, 83, 98n9; Katrina-related deaths and, 563, 565–566; loss and, 479, 482; mental health/illness, 512, 523; police violence and, 502; recovery from disease and, 263, 280; sexual/ reproductive violence and, 132, 136–140 lesbianism, and cosmetic surgery after breast cancer, 392–395, 394 letting die/making live, 627, 714 Levi, Ron, 103 Lévi-Strauss, Claude, 87, 449, 630, 641, 757 Liberation upon Hearing in the Between (The Tibetan Book of the Dead), 651, 660n2 Lienhardt, Godfrey, 632 life: overview and definition of, 594; binary oppositions and, 630, 634, 641, 644n7, 659; biopolitics and, 4, 8, 14–15; body/ies and, 332, 354, 357, 631, 644n9; the body’s boundary with, 332, 354, 357; combatinjured soldiers’ rehabilitation and, 334, 399–400, 403–408, 413n4, 414n12; cycles of, 71, 428, 526–529, 534–537, 706; as between two deaths, 501–502, 504, 507; death’s boundary with, 67, 630; death versus, 631, 644n9; disabilities and, 413n4, 446, 526–529, 534–537; dying and, 30, 45, 706; fragility of, 3–4, 28–30, 165–166, 443, 527; healers/healing and, 338–339, 342–343, 350–351, 376–377; hunger and, 447, 576–578, 587–588, 594; immunology and, 332, 354, 357; individuality and, 3, 15–20, 27, 32nn8–9; life beside itself and, 713–714, 724–725; life expectancy rates and, 779–781; limits and, 459–460, 461nn6–8; loss and, 444–445, 476, 480, 482, 486–487, 489–490; milieu and, 3, 16–25, 27, 32n9; modernity and, 68, 79, 628; natural and social mutual absorption and, 3–4; organ transplant programs and, 419–420, 422–423, 427, 428; police violence and, 493, 495–497, 500–504, 506–507; psychosocial treatment programs and, 165, 301–306, 308–309, 312; quality of, 9, 253, 270–271, 282, 305, 545, 548, 594, 606–607, 749, 753, 767n27; secular body/

854

•

INDEX

ies and, 338–339, 342–343, 350–351; STS and, 2; suicides and, 712–716, 718–722, 724–725, 725n8; survival and, 500, 626, 730, 734, 736–738; thresholds of life and, 23, 30–31, 594; as worth living, 399–400, 404–406, 408, 414n12, 626, 743; youth/ death relation and, 626–627, 743, 749, 750, 753, 763, 767n27. See also everyday life; valuation of lives (worth of lives) life, and concept tension: overview of, 443–445, 449–450, 461nn1–2; autonomy/self-autonomy and, 445, 453; container-contained model and, 456–457; humanity and, 443–444, 454; identity and, 450, 454–455, 459; intersubjectivity/ies and, 456, 460; Kuranko of Sierra Leone and, 443, 451–454, 459–460; life within limits and, 459–460, 461nn6–8; Maori of New Zealand and, 453–454; materiality and, 450, 453; maternal care and, 459–460, 461n7; migrant narratives and, 443, 457–458, 460, 461n8; migrants and, 443, 457–458; obligations and, 445, 459–460; Oedipal project and, 457–459; ordinary expression versus conceptual schema and, 3, 33n12; patriarchy and, 459–460, 461n7; phenomenology and, 455–456; psychic and, 456; symbolism and, 450, 453–454, 459; tradition/s and, 457–460; violence and, 443, 451–453; Warlpiri of Australia and, 443, 451–454, 456 life and death as conjoined: adoptees and, 117; adoption files and, 101; al-Qireyne in refugee community and, 148, 152; ancestors and, 594; binary oppositions and, 630, 634, 641, 644n7, 659; biotechnologies for reproduction and, 47, 67–68, 67–71, 79; boundary and, 67, 630; in Buddhism, 1; childbirth and, 41; colonialism and, 335, 432–433, 435; in contemporary world, 1; death and, 631, 635; form/s of life and, 30; healers/healing and, 376–377; Katrina-related deaths and, 447, 568–570, 572n17; life as circulating and, 633, 644n11; making live/letting die and, 627, 714; mental health/illness, 523; normative death and, 658–659; organ transplant programs and, 422, 428; philosophy and, 1–2; police

violence and, 500–501; psychosocial treatment programs and, 302, 304, 308–309; reproductive health and, 64; self-immolation and, 600, 607, 610; sexual/reproductive violence and, 131, 134, 140; spirit and, 594; stem cell biotechnologies and, 47, 71; subjugated relations and, 152, 303; suicides and, 712–715, 719–721, 725; survival and, 500, 626; waxing and waning and, 527; youth/death relation and, 627, 750, 763, 767n27 life beside itself, 713–714, 724–725 life expectancy rates, 779–781 life itself. See everyday life Lim, Stephen S., 50 Lingis, Alphonso, 664 Link, Bruce, 207 Linker, Beth, 399–400 little death, 68, 70–73, 79 Litzinger, Ralph, 614n2 Llewelyn-Davies, Melissa, 182n13 local, the, 15–17, 19–20, 32n8, 79–80, 185–186, 219, 225–226, 228n4, 229n14, 447, 563–567, 572n11, 627, 762 Lock, Margaret M., 15, 17, 19–20, 32n8, 67, 630, 656 Lombard, Jacques, 635 lonely deaths (kodokushi) of elders: overview of, 663; abandonment through disinterest and, 664–668, 671–672; belonging and, 664, 667–668, 669; care/caregiving and, 664, 667, 669–670; cemeteries/burials and, 667; continuity and, 665; corpse donations or “gifts” and, 667; demographic statistics and, 666; documentation and, 662–663; economic/financial insecurity and, 666, 669; everyday life and, 663, 669; family corporate capitalist system and, 665–666, 669, 672n3; grief and, 664, 668; homelessness and, 665, 669, 671–672; hope/hopelessness and, 666, 672; in-betweenness and, 664, 669, 671, 672; intimacies and, 624, 669–670; longevity and, 662–664; loss and, 669; marketization and, 624, 664, 666; materiality and, 666, 669; NALC and, 670; NEET and, 664; (neo)liberalism and, 664, 666; NHK and, 663, 667–668;

“not-at-home” and, 669; post-3/11 and, 667–672, 672n5; precariat/precarious proletariat and, 666, 672n2; precarity and, 664–667, 669–670, 672n2; rebirth/ reborn and, 671; regional living rooms or chiiki no chanoma and, 669–670; relationless society or muen shakai and, 663–664, 667, 669–670; self-sufficiency and, 668; social issues and, 624, 663–672, 672n2; socially withdrawn youth and, 624, 664, 669; solitude and, 663–664, 669; suffering and, 664; suicide and, 624, 664, 669; survival and, 663; symbolism and, 671; temporality/ies and, 664; valuation of lives and, 664, 668; visible/invisible and, 669; vulnerabilities and, 664 longevity, 534, 662–664, 772 longing (kajjarniq), and suicides, 722–723, 726nn11–12 loss: overview of, 444–445, 475–477, 488–490; addiction and, 165, 318–321, 323–325, 327n1, 327n3; adoptees and, 115–116, 118, 121, 123–127; agency and, 477; alternative expressions of, 125–127; anger and, 482–484; belonging and, 444, 475; care/ caregiving and, 483–485, 488; chronic crisis and, 489; collective identification and, 475, 479–480, 484, 486–489; conjugal loss and, 475–477, 480–490, 490n1; cosmetic surgery after breast cancer and, 383, 385, 389; death and, 445; detainees or al-asra’ and, 444, 475–476, 478–480, 483; disabilities and, 531; dying and, 700, 703, 705–707, 706; embodiment and, 444–445, 482; endurance or sumoud and, 444–445, 477, 486–488; ghosts and, 479, 490n1; grammar and, 481, 490; grief and, 445, 479, 486–487, 490n1; healers/ healing and, 332, 368; historical narrative for, 477–480; humanity and, 479; human rights and, 476, 479, 485; individuality and, 445; intimacies and, 476–477; language and, 484, 486–489; law/s and, 445; legitimacy/illegitimacy and, 479, 482; life and, 444–445, 476, 480, 482, 486–487, 489–490; lonely deaths of elders and, 669; loss and, 444–445; loss of politics and, 444–445, 476, 484–488,

INDEX

•

85 5

loss (continued) 487–488; martyrdom and, 478–480, 479; medicalization of dying and, 694; men as detaineess statistics and, 479; mental health/illness and, 445, 475–476, 481, 482–483, 488, 516, 518, 520, 522–523; mourning and, 476–477, 479–482, 484, 486–490; normative death and, 648, 660; pain and, 481; police violence and, 494, 497–498, 500–502, 506–507; pregnancy and al-Qireyne in refugee community and, 153; psychosocial treatment programs and, 308–311; sanity/”mad” and, 484, 488; self-immolation and, 604; subjectivity/ies and, 444, 477–478; suffering and, 476–479, 482, 485–486, 488; survival and, 730; temporality/ies and, 476, 480; victimhood/victimization and, 478–479; violence and, 477–478, 480; voiced/ unvoiced effects and, 475, 477, 480, 489; “we” and, 444, 489; widows of martyrs and, 475–476, 480–484, 487, 489, 490n1; wives of detainees and, 475–476, 480, 484–490; women as detainees and, 479, 487; youth/death relation and, 743, 752, 763 Loughner, Jared, 205–206 Lourde, Audre, 384 Lovell, Anne M., 47 lovers, and relation with hijras, 83, 85–86, 89, 92–93 ludic, 432–433, 466, 626–627, 752, 754, 762–763 Macleods, 241–245, 248nn6–7 “mad”/sanity, 153, 162, 205–206, 211–212, 214, 484, 488 Maine, Henry, 342 makeovers, 382–383, 388–389 making live/letting die, 627, 714 Makley, Charlene, 616n10 Malcolm X, 209, 211–213 Malinowski, Bronislaw, 86–87, 90, 93, 98n5 Mander, Harsh, 581 Mao Zedong, 222, 643, 737 March 11, 2011 earthquake/tsunami/nuclear meltdown, 667–672, 672n5 marginalization, 185, 190, 421–422, 429n7

856

•

INDEX

Margolles, Teresa, 743 marketization: inequality of disease/death and, 162–163; lonely deaths of elders and, 624, 664, 666; of plasma, 162–163, 223–224; private TB drug marketization and, 233, 239–242, 245–246, 248nn6–7; right-tohealth litigation and, 253–255, 263–264; TB drugs and, 162–163, 232–233, 239–242, 245–246, 248nn6–7; waiting in clinics and, 169–170, 181n6. See also (neo) liberalism Martinez, Katherine “Katie,” 392–395, 394, 397n14 martyrs (aš-šuhadâ’), and loss, 478–480 Marx, Karl, 178–179, 680 masculinity, 306, 334, 385–387, 386, 392–395, 394, 400, 403, 405–408, 412. See also femininity, and cosmetic surgery after breast cancer mass killings, 162, 205–206, 213–214, 632 materiality: addiction and, 317, 323, 328n8; the body/ies and, 12, 303; colonialism and, 431–432, 434, 437–438; combat-injured soldiers’ rehabilitation and, 399–400, 411–412; death and, 631–634, 637–638, 640–641, 643, 645n27; disabilities and, 544, 554; healers/healing and, 374, 376–377; life/concept tension and, 450, 453; lonely deaths of elders and, 666, 669; psychosocial treatment programs and, 302–303, 305, 308–309, 311; reproduction and, 41, 56; secular body/ies and, 338; survival and, 732, 735; valuation of lives and, 772, 778; youth/death relation and, 744, 748–749, 754, 757, 760–761, 763 maternal-fetal relation, 332, 359–360 maternal mortality rate (MMR), 41–42, 48–50, 49, 62, 64n1, 77, 780, 785, 805 Mathews, Andrew, 107 Mavalankar, Dileep V., 64n1 Mbembe, Achille, 303, 368, 375, 378 McGovern, George, 404–405, 413n9 McGranahan, Carole, 614n2 McGuinty, Patrick, Jr., 340–341 McMillan, Della, 457 Medawar, Peter, 354 Médecins du Monde, 775 Médecins sans Frontières, 775

media, 100–101, 108, 110, 418, 420, 429nn2–3, 751, 753, 760, 767n26 mediation forms, and death, 624, 629–630, 643, 644n2, 648–651 medical anthropology (anthropology of medicine), 2, 5, 20–21, 31n1, 161, 730 medically terminated pregnancies (MTPs), 71–72 medicine/medical technologies: overview of, 161–166; cancer and, 162, 190–196, 200, 202n13, 202n15; colonial medical archive and, 431–433, 435–438; death and temporality/ies and, 657; exceptional-medicines program for diseases and right-to-health litigation and, 252–253, 256, 258–264, 262; human rights and, 256–257, 264–265; idiosyncrasy in biology and, 164; marketization and, 162–164, 186, 190, 239, 245–246, 253, 255–256, 263–264; medical education/knowledge and, 18, 33n11, 161–162, 164; medicalization critiques and, 161, 207, 212; medicalization of dying and, 675, 678–679, 683, 686–687, 689, 692–693, 695; medical model, and disabilities and, 526–529; medico-legal sexual assault forensic intervention and, 289–291; needs/nature imagined and reproductive health and, 42, 56, 58–59, 65nn2–3; normative death and, 656–657; painkillers and, 162, 190–196, 200, 202n13, 202n15; pharmaceutical industries and, 163, 232–233, 237–242, 246, 248nn6–7; preventive medicine versus, 163–164, 253, 256; public health care costs and, 273, 282; right-to-health litigation and temporality/ies of, 260, 266; right to medicines and, 270, 273, 280, 284, 285n9; SRM and, 785–786, 806; TCM healing and, 642; temporality/ies and death and, 656–657 memory (remembering): addiction and, 319–321, 327, 327n6; adoptees and, 120–121, 127; colonialism and, 431–434, 437–438; ethics of survival and, 502, 706; forgetting versus, 291–292, 311–312; Katrina-related deaths and, 567–570; kinship and, 121, 127; memory books by adoptees and, 120–121; normative death

and, 648, 652, 654; organ transplant programs and, 422–423; psychosocial treatment programs and, 165, 304–305, 307, 310–312; sexual/reproductive violence and, 140; suicides and, 723–724; survival and, 730, 732, 735–736; texts for, 432–433 menstrual regulation (MR) law, 135, 138–139, 140n5 mental health/illness: overview of, 445, 511, 522–523; Agra Institute of Mental Health and, 510, 512–514, 522; aspirations/ aspirational and, 511, 517–518; blame and, 514, 517–518; care/caregiving and, 517; circuits and movement and, 514–517, 520–522; conjugal loss/relations and, 475–476, 481, 482–483, 488, 510, 514–517, 520–521; connections and, 514, 518–519, 522; continuity and, 501, 519; corpse donations for dissections and, 429n7; dance and movement and, 518–520, 522–523; death and, 523; ECT and, 517; embodiment and, 519, 523; everyday life and, 445, 510–512, 514, 518, 520; grammar and, 512, 519; habitus and, 511; healers/healing and, 513–514; intersubjectivity/ies and, 516, 518; intimacies and, 445, 516, 522; kinship and, 445, 511, 514–518, 520–522; legitimacy/illegitimacy and, 512, 523; life and, 522–523; loss and, 445, 516, 518, 520, 522–523; mass killings and, 162, 205–206, 213–214; modernity and, 511; motion/ movement and, 512–518, 520–522; myths and, 511, 515, 520, 523; pacing and, 512–513, 516; police violence and, 496, 503–505; presence/absence and, 445, 513–516, 518–520, 522–523; sanity/”mad” and, 153; schizophrenia and, 510, 512, 516–518, 520, 523; self and, 511, 513, 518, 522–523; solitude and, 522; subjectivity/ies and, 517–518; symbolism and, 511–512, 518; temporality/ ies and, 513–518, 520, 522–523; therapy/ therapeutics and, 513, 517, 519; tradition/s and, 511; treatment services and, 322, 324; visible/invisible and, 519 Métraux, Alfred, 308 migrant narratives, 443, 457–458, 460, 461n8 milieu, 3, 16–25, 27, 32n9, 45, 625 militan (Haitian activists), 304, 306–308, 307

INDEX

•

85 7

military conflicts/operations, 150–151, 155–156, 156n3, 628, 775–776, 784, 788, 818n10 mind, body, soul (Geist, Körper, Seele), 640–641, 645n25 miscarriages, 61, 64, 77, 144–146, 148, 151–152, 154–156 (mis)fortune (kruh), and survival, 735, 740n10 missing girls/women (sex selection) at birth statistics, 47, 563, 571n10, 628, 786, 818n3 Mitchell, Graham, 359–360 modernity: adoptees and, 118, 123; cruelty and, 30; death and, 635; death and late, 68, 79, 628; disabilities and, 526–527, 529, 532, 536; good death and, 623; healers/healing and, 332, 368–370, 372–375, 378, 379n6; hunger and, 577; institutions and, 551; Islam and, 149, 332, 367–369, 375–376; Islamic, 332, 367; late, 68, 79, 628; mental health/illness and, 511; “newness” and, 2; organ transplant programs and, 419, 421–423, 426, 428; psychosocial treatment programs and, 304, 309; race and, 6; racial health disparities and, 551–552; secular body/ies and, 337–338, 340–345, 347–350; self-immolation and, 604–607, 610, 617n19, 617n25; sexual/reproductive violence and, 132–133, 139; subjectivity/ies and, 551–552; suicides and, 626, 722, 724, 725, 726n10; survival and, 738, 739; valuation of lives and, 773–774, 781; valuation of lives in institutional practices of, 4; whites and, 552; youth/death relation and, 758, 762. See also (neo)liberalism Monk, Ray, 344 Montaigne, Michel de, 461n1 Montgomery, Joanna, 392 moon model, and death, 635–636, 643, 644n17, 645n19 morals. See ethics Moraru, Christian, 701 Morel, E. D., 436 morgues, and youth/death relation, 748, 752, 760–761 Morris, Errol, 386 mortality rates: overview of, 779–780; children and, 753, 765n20, 766n22; HIV/AIDS and, 753; IMR and, 51, 63, 766n22; local science and, 447, 563–567, 572n11; MMR and,

858

•

INDEX

41–42, 48, 49, 50, 62, 64n1, 77, 780; valuation of lives and, 779–781; youth/ death relation and, 753 Mosse, David, 51 motherhood and birth mothers: addiction and mother-daughter relationship and, 165, 318, 322, 324–327; adoptees and, 115–116, 120; adoptions and, 104–109; disabilities and, 528–529, 536; gender violence and adoptees and, 116, 120; mother-infant attachment and, 135, 137–139; reproductive health and, 64; sexual/reproductive violence and, 137–138; trauma and adoptees and, 115–116, 120 motion/movement, and mental illness, 512–517, 512–518, 520–522 Moulds, Donald, 536 mourning: addiction and, 320; bereavement and, 696–700, 707, 709n6; Katrinarelated deaths and, 447, 569–570; loss and, 476–477, 479–482, 484, 486–490; matanga and, 744–748, 758, 761–763, 764nn1–10, 765nn12–15, 766n21, 766n23; normative death and, 648, 652, 654, 659; police violence and, 494, 501, 507; psychosocial treatment programs and, 309; rural areas and, 744–748, 762, 764nn1–10, 765nn12–15, 767n27; self-immolation and, 602; stages of bereavement and, 696, 698–699, 709n6; youth/death relation and, 744–748, 751–757, 758, 761–763, 764nn1–10, 765nn12–15, 766n21, 766n23 Mous, Cornelie, 696, 698, 700 Moyn, Samuel, 775 mucopolysaccharidosis (MPS), 263–264 Mueller, Anders, 123–125 multidrug-resistant tuberculosis (MDR-TB), 232–235, 241–247, 247n1, 248nn6–7, 249n9 multifetal pregnancy reduction (MFPR), 77–79 Murakami Ryū, 670 Muslims. See Islam myths, 31, 86–92, 95–97, 98n5, 118, 124, 511, 515, 520, 523, 623, 629, 634–636 Nagin, Ray, 564 Nancy, Jean-Luc, 349–350 Nanda, Serena, 90–91

Naoroji, Dadabhai, 577 natal alienation, 303, 309 National Association for the Advancement of Colored People (NAACP), 210, 212–213 National Health Service (NHS), 167–168 nationalism: adoptions and, 102–104; al-Qireyne in refugee community and, 143; combatinjured soldiers’ rehabilitation and, 333–334, 399–400, 403, 413n7; Islamic nationhood and, 133, 140; personhood and, 44; race and, 6; self-immolation and, 599–600, 602, 615n7, 615n9, 616n11; sexual/reproductive violence and, 44, 132–133, 138, 139–140; survival and, 731, 735 National Rural Health Mission (NRHM), 48–49, 49, 50, 53 National Tuberculosis Program (NTP), 234, 236–237, 236–239, 243, 245–247 natural and social mutual absorption, 3–5, 9, 15, 23, 30–31, 32n3, 44, 140, 165–166, 334 necropolitics, 303, 399, 412, 413n9, 758, 764 Nelson, Debra, 388–392, 390 (neo)liberalism, 122–123, 125; combat-injured soldiers’ rehabilitation and, 334, 399–400, 402–404, 406, 410, 412; cruelty and, 30; equality and, 12; HIV/AIDS and, 221–222, 225; law/s and, 161; lonely deaths of elders and, 664, 666; maternal care and, 461n7; rights liberalism and, 3, 9, 12; right-tohealth litigation and, 253–256, 265; secular body/ies and, 337, 340–342, 345, 347, 349–350, 352n7; subjectivity/ies and, 327n7; valuation of lives and, 773; waiting in clinics and, 161; youth/death relation and, 759. See also marketization; modernity neonatal intensive care units (NICUs), 532 nervousness, 335, 433, 435–438 Nestor, Paul, 206 neurodiversity movement and ASDs, 9–12, 164, 446, 535 newborn babies, 42, 83–84, 89–92, 94–97, 149–150, 526, 528, 532 “newness,” 2–5, 32n3, 41 Nguyen, Vinh-Kim, 15, 17 Nietzsche, Friedrich, 714 Niven, Larry, 688 nocturnal wake ritual, 744–746, 748, 752, 764n7

nonchoice/choice, and adoptees, 118, 120, 124 non-Christians, and valuation of lives, 627, 773–774 nonhuman life, 148, 178, 332, 594 noninvasive prenatal testing (NIPT), 530, 537n2 non-medical attendants (NMAs), and combatinjured soldiers’ rehabilitation, 401–402, 407–408 “nonself”/”foreignness,” and immunology, 332, 354–360, 362–363 Norbu, Tenzing, 600–601, 609, 611, 614 Nordstrom, Carolyn, 202n17 normative death: overview of, 623–624, 648–649, 659–660; agency and, 655; bad death and, 656; “between” or bardo and, 651–652, 660n2; the body/ies and, 624, 653, 657–658; care/caregiving and, 624, 652, 659; collective identification and, 624, 653, 655, 658; consciousness and, 648, 652, 654–655, 657; continuity and, 658–659; cremation and, 650, 654, 657–658; death/ rebirth cycle or sam ˙ sāra and, 651–652, 658–659, 660n2; dying and, 648, 649–652, 654–655, 660n2; ego and, 654–655; fashioning/unfashioning and, 652–655; funerals and, 650, 652, 654, 657–658; ghosts and, 652, 659–660; good death and, 649–651; grief and, 652; identity and, 648, 657–658; individuality and, 624, 653, 655; injury and treatments and, 650; karma and, 653–656; life and death as conjoined and, 658–659; loss and, 648, 660; medicine/medical technologies and, 656–657; memory and, 648, 652, 654; mourning and, 648, 652, 654, 659; pain and, 651, 658; personhood and, 624, 652; poiesis and, 652–655; rituals and, 648, 651–655, 657–659; sacrifice and, 657; self and, 652, 654; sensibility and, 652; social issues and, 648, 652, 655; spectral and, 652; suffering and, 653–654, 658; temporality/ ies and, 656–659, 660n4; transformations and, 648, 652, 655; videotape as mediation form and, 624, 648–651 normativity: biopolitics and, 4; combat-injured soldiers’ rehabilitation and, 399–400, 402–405, 407–412, 413n7, 413n10, 414n14; cosmetic surgery after breast cancer and,

INDEX

•

85 9

normativity (continued) 333, 389; disabilities and, 446, 527–528, 532–533; dying and, 625, 698, 704–706; family/ies and, 102, 104, 107–108, 110; law/s and, 110; “normal science” in global and, 14; vitality and, 16–18, 32n10 North-South divide, 14, 186, 776 “not-at-home,” 444, 471–472, 669. See also fall out of the world Not Dead Yet (NDY), 525–526, 528–529 Noyes, Arthur P., 208 numbers/enumeration, 448, 563, 600–602, 605–607, 611–613, 617n22, 617n27, 618n28, 628 nursing home (verpleeghuis). See dying Nussbaum, Martha C., 413n2, 533–534 nutrition: death and, 635; hunger and, 592–593; malnutrition/undernutrition and, 105, 579–580, 581–583, 582–583, 595n7; reproductive health and, 51, 56; SRM and, 785, 804, 806 Obama, Barack, 270, 552, 676, 686 obligation/s, 91, 104, 149, 283–284, 424, 429n6, 445, 459–460 Oedipal project, 457–459 organ donation (organ bağıșı), 418, 422–423 Organisation for Economic Co-operation and Development (OECD), 786, 805–807 organ sales, and commodification, 419 organ transplant programs: overview of, 334, 418–419, 428; affects and, 334, 426; biological and, 334, 426; biopolitics and, 425, 427–428, 429n7; brain death and, 419, 424–428; cadaver donations and, 334, 420, 422, 424–427, 429n7; cards for donors and, 420, 429n2; collective identification and, 419, 422–423, 425, 428, 429n6; commodification and organ sales and, 419; consent cases and, 419–420; death and, 419, 421, 422, 424–428, 630, 643, 644n8, 645n32; endogamic practices and, 418, 428n1; ethics and, 630, 644n8; Feast of the Sacrifice and, 418, 422; female suicides and, 334, 420–421, 429n2, 429n4; forgive/forgiven and, 422–423, 428; gift and, 424, 429n5; grammar and, 424;

8 60

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INDEX

identity and, 422, 427; Islam and, 422–423, 425–426, 429n7; key acts and, 428; kidneys and, 419–420, 424–425; language and, 422–424; law/s and, 425–427; life and, 419–420, 422–423, 427, 428; male suicides and, 421; marginalization and, 421–422, 429n7; media and, 418, 420, 429nn2–3; memory and, 422–423; modernity and, 419, 421–423, 426, 428; obligations and, 424, 429n6; organ donation and, 418, 422–423; personhood and, 421–422; politics/political power and, 421, 425, 429n4; public space and, 418–422, 425–426, 428; religions and, 334, 418, 422–424; rituals and, 419, 422–424; sacrifice and, 334, 418, 422–424; sensibility and, 425–426, 428; stigmatization and, 334, 429n7; subjectivity/ies and, 422–424; suicides and, 334, 418–426, 428, 429n2, 429n4; symbolism and, 334, 419, 422–424, 428, 429n6; tradition/s and, 418, 421–422; the unconscious and, 423 Other, the, 494, 507, 632–633, 724, 773 Oz, Amos, 717 Padmanabhan, P., 64n1 pain/pain management: cancer and, 162, 186, 189–191, 201nn9–10, 202n11, 202n13, 202n15, 202n17; dying and, 697, 700; global discourse and, 185, 189–190; hijras and, 95–97; humanity and, 338; individuality and, 186–187, 189; institutional complexes and responses to, 161; language and, 146–147, 156, 186–187, 200, 202n17, 612; laughter and, 162, 188–189, 191, 196–200; loss and, 481; marginalization of, 185, 190; medical interventions as painful and, 162, 186, 187–189, 193–196, 201nn9–10; medicalization of dying and, 689–691; normative death and, 651, 658; pain medications and, 542–543, 547–549, 551, 553–554, 555nn8–9; pain politics and, 186–187, 202n11; police violence and, 494, 500, 502–504; racial health disparities and, 542–543, 547–549, 547–553, 551, 553–554, 555nn8–9, 555n9; reproductive health and, 57–60, 62–64, 65n3; secular body/ies and, 331, 337–339, 342–344, 348; symbolism

and, 187; WHO protocols for, 189. See also suffering palliation, 182n16, 185–187, 189–192, 195–196, 198–200, 202n13, 697; autopalliation and, 196, 198–199 Pandolfo, Stefania, 727n15 Parsons, Talcott, 272, 279, 284n5, 285n16, 286n18, 356 pathology/ies, 16–18, 17–18, 27, 32n10, 333, 389, 446, 546–549, 552, 554, 555nn6–7 patients: compliance/noncompliance of, 164, 273, 277–280, 285n16; doctor relations with, 271–273, 277–280; recovery from disease and, 271–272, 277–278, 281–284; right-to-health litigation and, 164, 255, 257–258, 260, 263–265, 271–272, 277–278, 281–284; waitng in clinics and, 169–176, 181nn9–11 patriarchy, 459–460, 461n7 Patterson, Orlando, 303 Paulson, Dana, 692 penitential practices, and psychosocial treatment programs, 302, 304, 308, 313 performativity, 21, 84, 90–91, 147, 602, 616n10, 623, 626–627, 631, 634, 755–756, 762, 766n24, 767n27 Perrenoud, Alfred, 778 personhood: combat-injured soldiers’ rehabilitation and, 399–400, 403, 406, 411, 413n2; death and, 641; disabilities and, 413n2, 528; dying and, 704–706; embodiment and, 15, 304; individual/world relation and, 465; Islam and, 138–140; little deaths and biotechnologies of reproduction and, 68; normative death and, 624, 652; organ transplant programs and, 421–422; psychosocial treatment programs and, 304, 309; reincarnation and, 641; sexual/ reproductive violence and, 44, 137–140, 138–140. See also citizenship Petryna, Adriana, 14, 772 Pfeiffer, Naomi, 72 Phelan, Jo, 207 phenomenology, 185, 190, 197, 199, 455–456, 471–472, 544, 554 phenylketonuria (PKU), 261–262, 262, 264 philosophy, 1–2, 12, 21 Pinto, Sarah, 53, 63

Piombo, Sebastiano del, 386, 386 placebo research, and clinical trials, 275, 285n13 plasma-fraction industry, and HIV/AIDS, 163, 217, 220–224, 228n1, 229n8, 229n13 Plato, 17, 382, 652 pleasure-in-inflicting-pain-and-death, 347–349 plenary adoption (adopción plena), 103 poiesis, 652–655 police violence: overview of, 445, 493–494, 506–507; autobiographical voice and, 505; being-in-the-world and, 445, 497–498, 506; care/caregiving and, 504; conjugal relations and, 495–496, 498–499; conversations as everyday actions and, 497–500, 506; death and, 494, 496–497, 500–501, 500–502, 503–504, 507; displacement experience and, 502–506; ethics of survival and, 502; falling out of the world and, 507; funerals and, 494–495; futurity and, 501–502; grief and, 494, 497–498, 506–507; guilt and, 496–497; historical narrative for, 494–495; individuality and, 493, 503, 506; intimacies and, 496–498, 501, 506; kinship and, 498–499; law/s and, 501–503; legitimacy/ illegitimacy and, 502; life and, 493, 495–497, 500–501, 500–504, 506–507; loss and, 494, 497–498, 500–502, 506–507; mental health/illness and, 496, 503–505; mourning and, 494, 501, 507; the other/Other and, 494, 507; pain and, 494, 500, 502–504; PTSD and, 500; solitude and, 499; suffering and, 494, 507; survival and, 500–502; “we” and, 507; witnesses of violence and, 501 politics/political power/secular authority: agency and, 333, 371, 379n4; democracy and, 301–304, 306, 311; ethics and, 443, 447–448; healers/healing and, 332–333, 367–378, 378n1, 379n4; HIV/AIDS and, 218, 222, 227; humanitarianism and, 254; hunger and, 447, 577, 580, 581, 583–584, 586; individual violence and, 346; Katrina-related deaths and, 562–564, 571n10; life and, 4, 15; loss of politics and, 444–445, 476, 484–488; maternal care and, 461n7; medical costs and, 163–164, 253–255, 259–260; organ transplant

INDEX

•

86 1

politics/political power/secular authority (continued) programs and, 421, 425, 429n4; patriarchy and, 461n7; politics of recognition and biological conditions and, 3, 5, 9–15, 32n6, 164; punitive/protective duality and, 32n4, 352n4; right-to-health litigation and, 163, 253–259, 255, 262–263; saintly authority relation with political power and, 368, 370, 373–374, 377–378; schizophrenia and black activist politics and, 162, 207, 209–213; self-immolation and, 447–448, 599–601, 606, 609, 617n23, 618nn28–29; sexual/reproductive violence and, 134, 138–140, 141n7; trauma and, 313; violence and psychosocial treatment programs and, 301, 303; youth/death relation and, 626, 743, 755, 757–758, 761, 764, 766n25 population control/management, 5–7, 60, 110, 162, 163, 206–214, 217, 221–222, 229n8. See also security Porter, Roy, 206 Porter, Theodore, 566 postgenocide, 536–537, 736 posttraumatic stress disorder (PTSD), 165, 302–304, 307, 310, 312, 413n8, 500, 733 potential/potentiality, and recovery, 273–274 Pottier, Johan, 580 poverty: addiction and, 317, 321–322, 327n2; adoptees and, 115, 118, 124, 127n1; adoptions and, 100–101, 104–110; al-Qireyne in refugee community and, 152; death and, 635; excess mortality rates and Katrina-related deaths and, 559, 567, 570n1; hijras and, 83, 95; HIV/AIDS and, 221, 227–228; hunger and, 583–584, 588–589, 591–594; individual/world relation and, 465–470; psychosocial treatment programs and, 301, 304, 306–307, 309, 312; sexuality and, 83; survival and, 729–730 Povinelli, Elizabeth, 181n6, 322, 327n7, 402–404, 407, 664, 672 precarity: overview of, 29, 33n13, 443–448; individual/world relation and, 465–466; lonely deaths of elders and, 664–667, 669–670, 672n2; precariat and, 666, 672n2; psychosocial treatment programs

8 62

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and, 309; valuation of lives and, 780; waxing and waning and, 448 pregnancy: al-Qireyne and, 145–147, 151–152, 154–155; assisted conception and, 42, 47, 68–69, 71–79; fetal demise/pregnancy loss and, 76–78, 80n1; forced, 130, 133–134, 138; hijras’ pregnancy and childbirth question and, 83–84, 87–90, 91, 93–95, 98n8; IVF and, 41, 68–74, 76–79, 80n2; loss and al-Qireyne in refugee community and, 153; maternal-fetal relation during, 332, 359–360; nationalism and, 131, 139; out-of-quota, 219, 225; poverty and, 47; prenatal tests and disabilities and, 525, 529–532, 537n2; reproduction biotechnologies and, 77; reproductive health and, 48, 50, 54, 59–61, 64; risk and, 47, 61, 77 prenatal tests, 525, 529–532, 537n2 presence/absence, and mental illness, 445, 513–516, 518–520, 522–523 preventive medicine, 163–164, 253, 256 primary health centers (PHCs), 51–55, 58–59, 61–63, 64n1 Prindle, Cathy, 206 private practitioners/health care, 50–51, 54, 57–58, 176–178, 232–233, 235, 237–238, 251–252, 255–257, 262, 264 pro-choice movements, 130, 140n1, 446 pro-life (“right-to-life”) movements, 69, 130, 140n1, 446 psychic, 124, 144, 331, 340, 347, 456, 714, 733, 740n3 psychosocial treatment programs: overview of and, 165, 301–302, 313; agency and, 305, 312; ancestors and, 303; care/caregiving and, 302, 304, 308; Christianity and, 165, 302, 312; confessional therapeutics and, 302, 304–305; conversion experiences and, 165, 309, 312; death and, 302–304, 308–309; death and recovery and, 165; democracy/politics of democracy and, 301–304, 306, 311; divine spirit or lwa and, 303; DSM and, 302; earthquake in 2010 and, 302, 312–313; embodiment and, 303, 304, 309–312; forgetting and, 311–312; funerals and, 308; guilt and, 303, 308–309, 311; healers/healing and, 165, 305, 312–313; humanitarianism and, 165, 302–310;

human rights and, 301–307, 309; identity and, 302–304, 306–309, 313; individuality and, 302–304, 307, 309, 312–313; insecurity or ensekirite and political violence and, 301–304, 306–307, 309, 312–313, 314n2; intersubjectivity/ies and, 309; kinship and, 303, 306–309; life and, 165, 301–306, 308–309, 312; loss and, 308–311; masculinity and, 306; materiality and, 302–303, 305, 308–309, 311; memory and, 165, 304–305, 307, 310–312; militan and, 304, 306–308, 307; modernity and, 304, 309; mortuary and, 303, 308–309, 312; mourning and, 309; natal alienation and, 303, 309; necropolitics and, 303; organized violence and, 301, 309; penitential practices and, 302, 304, 308, 313; personhood and, 304, 309; political violence and, 301, 303; poverty and, 301, 304, 306–307, 309, 312; precarity and, 309; PTSD diagnosis and, 165, 302–304, 307, 310, 312; purgatorial spaces and, 165, 302, 304–306, 309, 311–313; rebirth/reborn and, 165; risk and, 301, 306–307, 312; rural and, 307–308, 310; security/secure spaces and, 301–302, 304, 306–307, 309; self and, 304–306, 306–307, 309, 312; sexual assault and, 305, 309; shame and, 303, 306–307, 314n5; social death and, 303; social issues and, 303; souls of the dead and, 302–303, 308; spaces/ places and, 165, 301–302, 304–307, 309, 311–313; subjectivity/ies and, 304, 306–307, 309; suffering and, 302–306, 309, 313; temporality/ies and, 302, 304–308, 310, 312; therapy groups and, 304–310, 314n2; therapy/therapeutics and, 301–302, 304–306, 313; torture and, 303, 305; tradition/s and, 304–305, 308–309; TRM and, 313, 314n5; viktim and, 302–310, 313; visible/invisible and, 303; vulnerabilities and, 301, 307 psychotherapeutic pedagogies, 143 public space: disabilities and, 525–529, 531, 533–535, 537; funeral rituals and, 752; hunger and, 447, 576–578, 580, 581–582, 594; organ transplant programs and, 418–422, 425–426, 428; public attitudes/ beliefs and schizophrenia and, 206–208;

public-private interface and right-to-health litigation and, 251–252, 255–256, 262; secrecy versus, 140; self-immolation and, 600–602, 611, 613, 615n7, 615n9, 616n11; starvation and, 581; youth/death relation and, 626, 743–744, 752, 760, 766n21, 766n23, 767n26 purgatorial spaces, 165, 302, 304–306, 309, 311–313 qualitative/quantitative terms, 771, 780 queer/queerness, 83, 122, 401, 411–412, 413n4 Quetelet, Adolphe, 771 queuing, and waiting in clinics, 168, 173, 176, 180, 181n9 quotidian experience. See everyday life Rabinow, Paul, 5, 9 race: adoptees and, 115, 119, 120; biopower and, 6, 9; bricolage and, 6; colonialism and, 436, 438; combat-injured soldiers’ rehabilitation and, 413n6; cosmetic surgery after breast cancer and, 333, 382; modernity and, 6; nationalism and, 6; racism and, 6, 213, 327n7, 333, 382; schizophrenia and, 162, 206–214; security/population control/ management and, 7, 162, 206–214; sexual/ reproductive violence and, 131, 139; valuation of lives and, 627, 773–776, 779–780 racial health disparities: overview of, 446, 553–554; ADA and, 544, 554n1; aesthetics and, 544–545, 548; aspirations/aspirational and, 547, 551; biopolitics and, 545–547, 554; black pathology and, 446, 546–547, 549, 552, 555nn6–7; care/caregiving and, 446, 543–547, 554n4; citizenship and, 446, 551–552; civil rights movement and, 544, 552, 554n1; class/es and, 548, 550–551; clinic and, 543, 545–549, 551–553; consumerism and, 543; discrimination and, 543–545, 548, 551–552, 554n1; educational achievement and, 543, 549–554; equality and, 544; evidence-based medicine/ treatments and, 446, 543–546, 548, 554, 555n9; evidence-based research/knowledge production and, 544–546, 554; experiential knowledge and, 552–553; health-care access

INDEX

•

86 3

racial health disparities (continued) and, 545–546; Healthy People 2010 and, 545–546; homelessness and, 548, 550–551; identity and, 544; illegal/legal drugs and, 542–543, 547–549, 552–553; institutions and, 543–545; justice/injustices and, 544–545; life and, 446, 545, 548, 552–553; modernity and, 551–552; pain and, 542–543, 547–553, 555n9; pain medications and, 542–543, 547–549, 551, 553–554, 555nn8–9; second-order phenomenon/emergent phenomenon and, 544, 554; self and, 547–550, 549–550; sickle-cell anemia and, 446, 542–543, 546, 548–550, 552–554, 555n9; subjectivity/ies and, 544, 546–547, 551–552, 554; suffering and, 548–549; symbolism and, 544; visible/invisible and, 551; whites and, 547–548, 552; work/ employment and, 543, 546–552; World War I and, 527. See also discrimination racism, 6, 213, 327n7, 333, 382 Raman, Parvathy Sankara, 64n1 Ramonet, Ignacio, 346, 352n2 Randive, Bharat, 48, 50 Rao, Vidya, 63 rape. See sexual assault Rapp, Emily, 531–532 Rappaport, Roy, 645n19 Rawls, John, 780 Ray, Debraj, 786, 807 Read, Kenneth, 770–771, 777, 781 real/unreal, the, 28–29, 339 rebirth (reborn): biotechnologies for reproduction and, 71; cosmetic surgery after breast cancer and, 333, 383–384; death and, 633, 636; death and rebirth cycle or sam ˙ sāra and, 651–652, 658–659, 660n2, 732; HIV/ AIDS and, 706; lonely deaths of elders and, 671; psychosocial treatment programs and, 165; self-immolation and, 602, 607 recovery: overview of, 164, 270–274, 283–284; aspirations for, 161; clinical trials and, 14, 164, 263–264, 271–278, 281–284, 285n9, 285nn12–14, 687; clinic and, 164, 271; cost of/expensive medicines and public health and, 273, 282; cures and, 164, 270, 274, 280, 283–284; death and, 165; ethics and, 270–273, 275–280, 282–283, 285n14; from

8 64

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INDEX

events, 736; experimental therapies and, 164, 273, 277–280, 285n16; futurity and, 273; genetic disorder cases and, 273, 282–284; global and, 164, 271–276, 280, 284, 285n12; health insurance and, 270, 284; idiosyncrasy in biology and, 164, 273–274, 283–284; indifference and, 272–273; informed consent for clinical trials and, 275–276, 281, 285n14; institutions and, 164, 271, 273–274, 278–280, 285n15, 285n17; legitimacy/illegitimacy and, 263, 280; obligations and, 271–273, 275–280, 283–284, 285n14, 286n18; patient compliance/noncompliance and experimental therapies and, 164, 273, 277–280, 285n16; patient-doctor relations and, 271–273, 277–280; patient-litigants and, 271–272, 277–278, 281–284; placebo research in clinical trials and, 275, 285n13; potential/potentiality and, 273–274; power/ powerlessness of clinicians in clinical trials and, 271–273, 282–283; quality of patient outcomes and, 270–271, 282; right to heal and, 270–271, 273; right to health and, 270–271, 273, 281, 284; right-to-health litigation and, 271–272, 277–278, 281–284; right to medicines and, 270, 273, 280, 284, 285n9; sick roles and, 272, 274–276, 278–279, 284n5, 285n16, 286n18; state judicial domains and, 271; subjectivity/ies as patients and, 164, 271–277, 281–283. See also cure; healers/healing Reddy, Gayatri, 87, 89–91, 97n1 refuge spaces, and colonialism, 335, 433–434, 437–438 regional living rooms (chiiki no chanoma), and lonely deaths of elders, 669–670 rehabilitation programs, 132–134, 137, 139–140 Rehab Program, the (Victim Assistance Rehabilitation Program), 304–305, 310 reincarnation, 640–642 relationless death (muenshi) of elders, 624, 663, 667–668 relationless society (muen shakai), 663–664, 667, 669–670 relationships as technology, 41 relatives’/older women’s role, and reproductive health, 54–55, 57, 59, 61–63

religions: death and, 630, 632–633, 635, 637, 642; organ transplant programs and, 334, 418, 422–424; religious activities space and, 374–376; secular body/ies and, 331, 338–339, 341–344, 708; survival and, 730, 732, 734, 738, 740n4, 740n16, 741n20 religious activities space (dergâh), and healers, 374–376 remembering. See forgetting; memory repertoire paradox, and immunology, 361–362 reproduction of household, and HIV/AIDS, 163, 225 reproductive future/s: al-Qireyne in refugee community and, 44, 155–156; combatinjured soldiers’ rehabilitation and, 399–401, 403, 405, 407, 409–411, 413n10, 414n14; hijras and newborn babies and, 42, 83–84, 91–92, 94–95; reproductive health and, 60–61; sexual/reproductive violence and, 131, 138–140. See also futurity reproductive health: overview of, 41–42, 47–48, 62–64; actions and certainty of the state and, 41–42, 47; ambulance service for patient transport to, 50–51, 53–54, 59; ancestors and, 63; ANMs and, 49, 52, 56, 60, 62–64; antenatal care and, 47–49, 51, 54; ASHA workers and, 48–49, 52–59, 61, 63; biomedical and, 53, 60; birth songs and, 63; bricolage of technologies and tradition/s and, 63–64; care/caregiving and, 47–48, 50–59, 62–63, 64n1; caste hierarchies and, 53–54, 56–57, 62; CHCs and, 52, 56, 59, 61–64; childbirth and, 47–64; and colonialism, 334–335, 432–433; communication and, 53–54; conditional cash-transfer program and, 49–50, 55–59; continuities/discontinuities in state programs and, 52–53; contraception and, 61–62; corruption experiences and, 58; death and, 64; economic hierarchies and, 56–57; ethics and, 47; everyday life and, 47, 64, 68–70; family-planning programs and, 48, 49, 52–53, 60–61; family/relatives as symbolic capital and, 55–56; Gujarat and, 51–54; health care differences and, 56; Hindus and, 54–55, 59, 61; IMR and, 51, 63; institutional deliveries and, 48–51, 54–59, 61–63, 64n1; joy/celebration versus

medical condition and, 62–64; JSY program and, 49–54, 57; materiality and, 56; maternal body/ies and, 64; medical innovation and multiple outcomes and, 51, 55–56, 58; medical intervention needs/ nature imagined and, 42, 56, 58–59, 65nn2–3; methodology and, 52; missing women statistics and, 47; MMR and, 48, 50, 62, 64n1; models for, 63–64; motherhood and, 64; Muslims and, 54, 57–61; nutrition and, 51, 56; older women/ relatives’ role and, 54–55, 57, 59, 61–63; operations as multivalent and, 60; overt/ covert coercion by the state and, 61–62; pain management and, 57–60, 62–64, 65n3; PHCs and, 51–55, 58–59, 61–63, 64n1; population control/management and, 60; pregnancy and, 48, 50, 54, 59–61, 64; private health care and, 50–51, 54, 57–58; programs by the state to reduce MMR and, 48, 49, 52–53; public health care and, 51–55, 58–59, 61–63, 64n1; risks of childbirth and, 47, 59–60, 64; rural and, 48, 53–54; sexual and reproductive futures and, 60–61; sterilization and, 55, 60–62; traditional birth attendants or dais and, 55, 58–59, 62–63; traditional practices and reforms and, 50–52, 54, 58–62; training programs by the state and, 48, 53–54, 62; Uttar Pradesh and, 51–52 reproductive rights, 114, 130–134, 138–139 Research Centre for Torture Victims against Torture (RCT, now Danish Institute), 483 resilience system, and survival, 730 respite experience, and colonialism, 335, 433–434, 437 reverie (dream), 143–144, 148, 153–155, 334–335, 432–438, 625–626, 712–713, 719–721, 725, 734, 738 Richards, Audrey F., 579, 584 Richards, Naomi, 67 Richardson, Samuel, 348 Richardson, Sarah, 356 Richter, Simon, 385–386 Ricoeur, Paul, 731–732 rights liberalism, 3, 9, 12 right-to-health litigation: overview of, 163–164, 255, 264–266, 271–272, 281, 283;

INDEX

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86 5

right-to-health litigation (continued) biopolitics and, 253–254, 264–265; care/ caregiving and, 260–265; cerebral ataxia case and, 252–253, 256, 258, 261–262; chronic hepatitis C cases and, 259–260; clinical trials and, 164, 263–264, 271–273, 275–280; clinic and, 253–254, 257; consumer versus patient-citizens and, 252–253, 256–258, 257, 261–262, 264–265; discrimination and, 256–257; equality and, 164; evidence-based medicine and, 257; exceptional-medicines program for diseases and, 252–253, 256, 258–264, 262; genetics cases and, 261–262, 262, 273, 282–284; health-care access and, 257; historical narrative for, 255–257; HIV/AIDS and, 259; human rights and, 255; identity relation to existence and, 164, 265; individuality and, 164, 255, 257–258, 260, 263–265; inequality and, 162–163, 257, 262–263; institutions and, 162–163, 251, 255, 257, 265; justice/injustices and, 164, 254–255, 257, 263–264, 266; law/s and, 163–164, 251, 252, 253–259, 261–263, 265, 278; marketization and, 253–255; medical costs and, 163–164, 251–255, 257–260, 273, 282; MPS case and, 263–264; (neo) liberalism and, 253–256, 265; obligations and, 283–284; open-source anarchy and, 262–263; para-infrastructures and, 254–255, 261, 264–265; pharmaceutical/ biomedical markets and, 255, 263–264; pharmaceuticalization of health and, 163–164, 253, 255–256; pharmaceuticals rights and, 256–257, 264–265; PKU case and, 261–262, 262, 264; politics and, 163, 253–259, 255, 262–263; preventive versus pharmaceutical treatments and, 163–164, 253, 256; privatization of health care and, 255–257, 264; public-private interface in governmental institutions and, 251–252, 255–256, 262; quality of life and, 253; recovery from disease and, 271–272, 277–278, 281–284; shame and, 282; social issues and, 253–254, 257, 261–262, 262; subjectivity/ies and, 255, 262, 264–266; suffering and, 253; SUS and, 255–256, 261; temporality/ies and

8 66

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medicine/medical technologies and, 260, 266 “right-to-life” (pro-life) movements, 69, 130, 140n1, 446 risk: overview of, 8; adoptees and, 115–116, 120; childbirth and reproductive health and, 47, 59–60, 64; combat-injured soldiers’ rehabilitation and, 406, 408, 410; cure and, 14; desires and, 28; economic survival and, 14, 164–165, 296–298; hijras and, 86, 94, 97; HIV/AIDS and, 220–221, 225, 229n7; immunology and, 332, 360, 361–363; MFPR and, 78; moral hazard and health insurance and, 279, 285n17; population control/management and, 6, 110; pregnancy and, 47, 61, 77; psychosocial treatment programs and, 301, 306–307, 312; SRM and, 628, 784, 786–787, 805–806, 808–810, 818n5; work/ employment and sexual assault victims and, 164–165, 296–298 rituals: brother-sister incest and, 87; death and, 623, 630, 632–635; normative death and, 648, 651–655, 657–659; organ transplant programs and, 419, 422–424; self-immolation and, 448, 602, 607–609, 616n16; survival and, 626, 732–733, 735, 738–739, 740nn10–11, 741n18 Roach, Joseph R., 570 Rochereau, Seigneur Tabu Ley, 751, 753, 760 Rome, ancient, 349, 593–594, 759, 774 Rome Statute of the International Criminal Court (International Criminal Court Statute), 130, 140n1 Rose, Nikolas S., 8–9, 12 Rosenkrantz, Barbara, 689 Rospabé, Philippe, 460 Rosson, Gedge, 387 Rousseau, Jean-Jacques, 777 Royle, Edward, 339 Ruel, Malcolm, 632–634 rural areas, 48, 53–54, 163, 222, 229n9, 626, 676, 744–748, 761–762, 764nn1–10, 765nn12–15, 767n27. See also urban centers sacredness, 627, 730, 738–739, 772–773, 777, 781

sacrifice: Abraham/Ibrahim and, 418, 422, 632; adoptees and, 124; biological regeneration within rituals of death and, 2; biotechnologies of reproduction and, 70–72, 79; Christianity and, 632–633, 773–774; death and, 623, 631–634, 633, 636, 639, 645n22; gift and, 632–633; normative death and, 657; organ transplant programs and, 334, 418, 422–424; the other/Other and, 632–633; sacrificial donation or kurban bağıșı and, 418, 422; self-immolation and, 600, 603–604, 615n5, 615n9, 616n16; valuation of lives and, 773–774; youth/ death relation and, 758–759, 763 Sade, Marquis de, 346 sadism, 345–347 sadness and joy (sukh dukh) sharing, 95–96 Sahlins, Marshall, 143, 565, 572n17, 731 saints, 332–333, 367–368, 370–374, 377–378, 379n3, 379n5, 379n9, 383–386, 386, 395, 396, 397nn5–7; evliya and, 332, 367–368, 370–374, 377–378, 379n3, 379n5, 379n9 Salgues, Camille, 33n12 sanity/“mad,” 153, 162, 205–206, 211–212, 214, 484, 488 Sarkozy, Nicolas, 779 Sartre, Jean-Paul, 449–450, 460, 653 Saunders, Cicely, 697–698, 700, 703, 707–708, 709n4 Scarry, Elaine, 186–187, 189 Schelling, Thomas, 627, 777 Scheper-Hughes, Nancy, 506, 579–580 Schiavo, Terri, 526, 537n1 schizophrenia: overview of, 162, 205–207, 213–214; Black Power and, 162, 209–212; blacks and, 209–212; civil rights movement and, 162, 207, 209–213; docility of whites and, 162, 206–210, 212; DSM and, 208, 210–211, 213; equality and, 210; FBI and, 209, 212–214; gun violence and, 162, 205–206, 212–213; medicalization of violence and, 207, 212; medical racism and, 213; motion/movement and, 512, 516–518, 520, 523; public attitudes/beliefs and, 206–208; race and, 162, 206–214; sanity/”mad” and, 162, 205–206, 211–212, 214; victimhood/victimization of schizophrenics and, 206, 214; violence and,

161–162, 205–207, 209–214; visible/ invisible and, 207–208, 213; whites and, 206, 208–210, 212 science and technology studies (STS), 2, 5, 30, 32n3 Sebald, W. G., 479 secrecy, 140, 218–220, 222, 228n2, 642 secular, 332–333, 367–378, 369, 378n1, 708 security, 3, 5–8, 14, 32n5, 68–71, 79, 301–302, 304, 306–307, 309, 435–438, 444, 464, 468. See also population control/management self: addiction and, 313, 326; adoptees and, 115–119, 121–123, 127; affective self-determination and, 118–119, 122–123, 600–601, 612–614, 618nn28–29; al-Qireyne in refugee community and, 145, 149, 153–154; buffered, 338, 340; dying and, 697, 700, 703, 705–707; efficacy and, 549–550; empowerment and, 118–119; Enlightenment and, 363, 364n3; fashioning and, 121, 149, 254; healers/healing and, 338, 340; immunology and, 332, 354–357, 359–363, 364n3; improvement and, 333, 382, 387–388, 388; mental illness and, 511, 513, 518, 522–523; mortification and, 309, 312; negation and, 115–117, 119; normative death and, 652, 654; the other/Other and, 773; reflection and, 304–306; reliance/ sufficiency and, 399–400, 403, 406–407, 410–411, 547–550, 668; sacrifice and, 312, 423, 615n9; suicides and, 714, 724; survival and, 741n18; transformation and, 306–307, 309, 312; valuation of lives AND, 773; waiting in clinics and, 169 self-immolation: overview of, 447–448, 599–602, 614n2, 614n4, 615nn5–7, 617n27; affects and, 600–601, 612–614, 618nn28–29; being-in-the-world and, 604, 617n19; blame and, 601–602, 615n9; Buddhism and, 448, 602–604, 607–608, 613–614, 615n5; collective identification and, 603–604, 613, 616n15; communication and, 602, 616n10; Dalai Lama and, 599–603, 607–608, 615n9; death and, 448, 599–600, 602–604, 607, 610, 613–614, 616n12, 616n15; embodiment and, 448, 604, 610–611; ethics and,

INDEX

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86 7

self-immolation (continued) 447–448, 601, 604–614, 618n28; evidencebased knowledge and, 600, 604–606, 617n22; global discourse and, 600, 616n10, 762; human rights and, 448, 600–601, 604, 608, 612–613, 617n22, 618nn28–29; individuality and suffering and, 448, 614; language and pain and, 612; life and, 447–448, 600–602, 604–612, 607, 610, 615n9, 616n11, 617n22; loss and, 604; men and, 615n6; modernity and, 604–607, 610, 617n19, 617n25; mourning and, 602; nationalism and, 599–600, 602, 615n7, 615n9, 616n11; numbers/ enumeration and, 448, 600–602, 605–607, 611–613, 617n22, 617n27, 618n28, 628; performativity and, 602, 616n10; politics/political power and, 447–448, 599–601, 606, 609, 617n23, 618nn28–29; public space and, 600–602, 611, 613, 615n7, 615n9, 616n11; rebirth/ reborn and, 602, 607; rituals and, 448, 602, 607–609, 616n16; sacrifice and, 600, 603–604, 615n5, 615n9, 616n16; social issues and, 448, 601, 618n29; statistics and, 599, 614n4, 615nn5–6; suffering and, 448, 604, 612, 614; therapy/ therapeutics and, 610; tradition/s and, 599, 609; violence and, 601–602, 607–610, 609–610, 612, 615n9, 617n22, 617n25; virtue/virtuous deaths and, 448, 602–604, 610, 613, 616n12, 616n15; visible/invisible and, 615–616, 618n28; voiced/unvoiced effects and, 599, 614n2; witnessing/ witnesses and, 448, 612; women and, 600, 615n6. See also self Sellars, Wilfrid, 464 Sen, Amartya, 578–579, 592 sensibility/ies, 115–117, 119, 344–345, 348, 425–426, 428, 652 September 11, 2001 terrorist attacks, 75, 401, 682, 772, 776–777 sex ratio of mortality (SRM): overview of, 41, 627–628, 784–787, 817; health of populations and, 785, 817; institutions and, 785, 817; Iraq postinvasion era and, 784; medicine/medical technologies and, 785–786; middle-income countries and,

8 68

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INDEX

627–628, 785, 788, 807; military conflicts/ operations and, 628; missing women by age and, 786; missing women statistics and, 47, 786; MMR and, 785; numbers/ enumeration and, 628; nutrition and, 785; OECD and, 786, 805–807; postransition societies and, 628, 786, 818n2; public health and, 628, 785, 817; risk and, 628; statistical life and valuation of lives and, 627, 777–781; WHO and, 628, 784, 786, 788, 807–808, 808, 810, 812, 812, 814–816, 816–817, 821n14; women’s status and, 628, 785, 817; World Bank and, 785–786 sexual and reproductive violence: overview of, 43–44, 130–131; abandoned children and, 136; abortions and, 130, 132–135, 137–140; adoptions and, 132, 134–137, 139, 140n6; biopolitics and, 131, 134, 138–139; children’s personhood and, 44, 138–140; cleansing and, 135, 137–139; desires and, 140; family-planning programs postwar and, 131, 135; feminists and, 132–134; forced pregnancy and, 130, 133–134, 138; gender and, 130–132; heterogeneity and, 137, 139; humanitarian interventions and, 136–139; identity and, 139–140; intimacies and, 44; IPPF and, 134–135, 140n5; Islam and, 133, 136, 139–140; judicial silence and, 138; law/s and, 133–139, 140n5; legitimate sexualities and, 132, 137–139; life and death as conjoined and, 131, 134, 140; memory and, 140; modernist agenda and, 132–133; motherhood and, 137–138; mother-infant attachment and, 135, 137–139; nationalism and, 44, 131–133, 138, 139–140; natural and social mutual absorption and, 44, 140; Pakistani political project and Islam and, 131–133; personhood and, 137–138; politics/ political power and, 134, 138–140, 141n7; public secrecy versus memory of, 140; race and, 131, 139; rape against men and, 133; rape as war crime and, 130; rehabilitation program for women and, 132–134, 137, 139–140; reproductive futures and, 131, 138–140; reproductive rights and, 130–134, 138–139; shame and, 44; statistics and, 44, 131; symbolism and, 133; torture and, 132, 134; tradition/s in Islam and, 132–133;

vulnerabilities and, 140; vulnerabilities and political power and, 140; war heroines or birangonas raped women and, 132–134, 139–140, 140n3; war of 1971 and, 44, 131, 139, 775; wartime rape and, 44, 130–132, 137, 139 sexual assault (rape): overview of, 164–165, 298–299; bodying/bodied forth and, 299, 299n4; boundary-violating flirtation and, 164, 294; colonialism and, 435–436; court case and, 289–291, 295; co-workers and, 296–297; economic/financial insecurity and, 292, 299n2; forced pregnancy and, 130, 133–134, 138; forgetting and, 291–292; gender and, 165, 297–298; hack taxi drivers and, 164–165, 296–298; imagining/reimagining recovery and future work/ employment and, 164–165, 290, 292–298, 299n2; justice/live justly and, 164, 290–292, 299; “just living” everyday life and, 164, 289–292, 295, 298–299; kinship and, 164, 291–294, 299n3; medico-legal forensic intervention and, 289–291; against men, 133; parolees/ex-offenders’ work/employment and, 294, 299n3; psychosocial treatment programs and, 305, 309; risk at work/employment and, 164–165, 296–298; sexual contract and, 165, 297–298; social issues and, 165, 297–299; statistics and, 44, 131; subjectivity/ies and, 291–292; suicide and, 297; “talking to” and kinship and, 292–294; violence/threat of violence and, 164, 289, 291, 296; vulnerabilities and, 164, 289, 295, 297–298; as war crime, 130; wartime rape and, 44, 130–132, 137, 139; work/ employment and, 164–165, 290, 292–298, 299n3 sexuality: better off dead and, 413n3; combatinjured soldiers’ rehabilitation and, 334, 399–401, 407–411, 413n10; differences and, 83, 90–91, 97nn1–2; gender and, 15; pedagogy and, 85, 88, 93, 97; poverty and, 83; sex selection at birth statistics and, 563, 571n10, 628, 818n3; sexual/reproductive violence and, 132, 137–139; social contract and, 297–298 Shakya, Tsering, 615n9, 616n12

shame, 44, 86–87, 114, 116, 127n1, 282, 303, 306–307, 314n5, 319, 681, 735 Sharma, Sanjay, 578 Shim, Janet, 549 Shiva, Vandana, 591 Shklovsky, Viktor, 743 Shunsuke, Serizawa, 669 sickle-cell anemia, 446, 542–543, 546, 548–550, 552–554, 555n9 Siegel, Lee, 88, 94, 96–97 Sierra Leone, Kuranko of, 443, 451–454, 459–460 silence, 138, 162, 192–196, 200, 202n15, 324, 735–736 Simmel, Georg, 91 Simon, Frank, 209, 211 Simone, AbdouMaliq, 762 Singer, Peter, 526, 528 Singh, Bhrigupati, 3–4, 30–31, 32n4, 291–292, 352n4, 447, 591–592 Sistema para el Desarrollo Integral de la Familia (DIF), 100–104, 111nn1–2 situation and event relation, 5, 27–29, 559, 570 skin-deep beauty, 382, 384, 395 Slezak, Sheri, 390–391 social issues: adoptees and, 125; agency and, 322, 327n7; al-Qireyne in refugee community and, 153; biosociality and, 3, 8–9, 12, 32n6, 443; the body, 7, 87, 125; cancer and, 162, 187, 191, 194–200, 694–695; colonialism and, 7–8; combat-injured soldiers’ rehabilitation and, 334, 406–407, 414n13; disabilities and, 11, 532; dying and, 624–625, 698–700, 703, 706–707; embodiment and, 198–199; form/s of life and, 3–4, 21, 23; healers/healing and, 347, 352n4; hijras and, 86, 88, 92; HIV/AIDS and, 218, 262, 706; hunger and, 447, 580, 582–585, 595n6; individual/world relation and, 465, 470; lonely deaths of elders and, 624, 663–672, 672n2; natural and social mutual absorption and, 3–5, 9, 15, 23, 30–31, 32n3, 44, 140, 165–166, 334; normative death and, 648, 652, 655; nursing home and, 624–625, 698–700, 703, 707; psychosocial treatment programs and, 303; right-to-health litigation and, 253–254, 257, 261–262, 262; self-

INDEX

•

86 9

social issues (continued) immolation and, 448, 601, 618n29; sexual assault victims and, 165, 298–299; sick roles and, 272, 274–276, 278–279, 284n5, 285n16, 286n18; social death and, 117, 120, 218, 303, 406–407, 414n13, 703, 706; SRM and, 628, 786, 818n2; survival and, 732, 734, 739; valuation of lives and, 772, 780–781; youth/death relation and, 743, 752–753, 755, 758–759, 761, 766n25. See also specific social issues socially withdrawn (hikikomori) youth, 624, 664, 669 social workers, and nursing home, 625, 696, 699, 709n16 Soeba, Lama, 603–604 soft violence, 151–152 solitude, 411, 499, 522, 663–664, 669 Solomon, Andrew, 533 some ones’ (individuals’) death, 447, 560, 566–567, 569 Sontag, Susan, 199–200, 358, 383 soul, 2, 30, 95–96, 302–303, 308, 343–344, 631, 640–641, 645n25, 652, 733–734, 751 Souza, Paula Pinto de, 253, 260, 263, 265, 278 spaces (places): cancer and, 162, 187, 191, 194–200; cancer outpatient facility and, 683–684, 694; colonialism and, 335, 431–438; dying and, 700, 706; jinn, 145; Katrina-related deaths and, 447, 560, 565–567; land and, 730, 736–739, 740n12, 740nn15–16, 740nn15–17; purgatorial, 165, 302, 304–306, 309, 311–313; religious activities space or dergâh and Zöhre Ana and, 374–376; suicides and, 715–716, 724, 725n5, 726n13; transitional space in clinics and, 179, 182n17 Spacks, Patricia Meyer, 345 spectral (ghosts), 2, 30, 479, 490n1, 643, 644n2, 652, 659–660, 730, 732, 737 Spinoza, Baruch, 453–454, 653 spirit: healers/healing and, 332, 367, 372; life and death as conjoined and, 594; and possession and dis/possession, 44, 143, 153, 634, 636–638, 641–642; psychosocial treatment programs and, 303; sacred energy and, 730, 738–739; spectral and, 2, 30, 652, 751; spirit and, 635–641; spirit of

870

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INDEX

Atatürk or ruh and, 332, 367, 372; thresholds of life and, 30–31, 594; wandering spirits/souls or pret and, 733–734 staffing and staff ’s responsiveness, and waiting in clinic, 170–171, 174–175, 177–178, 180, 181nn11–12 “standing persons” (tsangan’olo) coins, and death, 637–639, 645n20, 645n23 Stanek, Jiri, 274, 276 starvation, 447, 576, 578, 580–583, 586–587, 592, 595n7, 729–730 state of abandonment (estado de abandono) status, 106 statistical life, 627, 777–781 statistical wars, and Katrina-related deaths, 560–563, 571nn7–8 stem cell biotechnologies, embryonic, 14, 42, 47, 68–73, 79, 359–360 Stephens, Kevin, 564–565 sterilization, and reproductive health, 55, 60–62 Stewart, Kathleen, 653 stigmatization, 235, 238, 334, 429n7 Stoler, Anne, 6–7 Stoller, Paul, 182n13 Stolnitz, George J., 789 Strathern, Marilyn, 173, 641, 726n12 Strauss, Anselm L., 694, 697 street children (bashege), 760 Strong, John, 658–659 structural violence, 14, 107, 161, 175. See also violence subjectivity/ies: adoptees and, 119, 125–127; citizenship and, 161–162, 168, 178–180, 182nn15–18; colonialism and, 431, 433, 435, 438; ethical, 444, 477–478, 731; healers/ healing and, 368–370, 372; hijras as desiring subject and, 91; hunger and, 580; intersubjectivity/ies and, 156, 309, 456, 460, 516, 518, 757–758; mental health/ illness and, 517–518; modernity and, 551–552; (neo)liberalism and, 327n7; organ transplant programs and, 422–424; psychosocial treatment programs and, 304, 306–307, 309; racial health disparities and, 544, 546–547, 551–552, 554; recovery from disease and, 164, 271–277, 281–283; right-to-health litigation and, 255, 262,

264–266; secular body/ies and, 339; secular body/ies and hypochondria and, 339; sexual assault victims and, 291–292; the subject and the world and, 153; suicides and, 716–717, 720, 724, 726n12; whites and, 552 sublunary form of life/world, and death, 636, 643 suffering: adoptees and, 116, 125, 127; al-Qireyne in refugee community and, 144; biotechnologies of reproduction and, 74, 77; cancer and, 187, 199–200; colonialism and, 431–433, 435; cosmetic surgery after breast cancer and, 333, 383; dying and, 698, 705, 707–708; healers/healing and, 332, 368; HIV/AIDS and, 227; humanitarianism and, 2; Katrina-related deaths and, 568; lonely deaths of elders and, 664; loss and, 476–479, 482, 485–486, 488; male infertility and, 74; normative death and, 653–654, 658; police violence and, 494, 507; psychosocial treatment programs and, 302–306, 309, 313; racial health disparities and, 548–549; right-to-health litigation and, 253; secular body/ies and, 337–340, 344–345, 347–351; self-immolation and, 448, 604, 612, 614; subdisciplinary boundaries and, 2, 31n1; survival and, 731–733; valuation of lives and, 777; Vietnam War and, 733. See also pain/pain management suicides: overview of, 625–626, 725; agency and, 719; assisted suicide and, 525–526, 709n4; biopolitics and, 626, 713–714, 724; biopower and, 625, 713, 718; bureaucracy and, 713, 716, 725; care/caregiving and, 716–717, 722, 725nn7–8; clock time and, 716–717, 716–719, 724–725, 725nn4–6; colonialism and, 713–714, 716–719, 721, 724, 725nn4–5, 726n11; combat-injured soldiers’ rehabilitation and, 406; communities and, 713, 718, 723; continuity and, 714; death and, 712–715, 719–721, 724, 725; desires and, 724; dreams and, 625–626, 712–713, 712–717, 713, 719–721, 725; embodiment and, 724; evidence-based science and temporality/ies and, 725n7; futurity and, 714–715, 721, 723, 726n14;

grammar and, 715; Katrina-related deaths and suicidality and, 447, 559–562, 561–562, 567–568, 571n4, 571nn7–8; knowing and, 715–716, 719–721; life and, 712–716, 718–722, 724–725, 725n8; lonely deaths of elders and, 624, 664, 669; longing or kajjarniq and, 722–723, 726nn11–12; memory and, 723–724; modernity and, 626, 722, 724, 725, 726n10; organ transplant programs and, 334, 418–426, 420–421, 428, 429n2, 429n4; the other/ Other and, 724; psychic and, 714; reincarnation and, 640–641; self and, 714, 724; sexual assault victims and, 297; spaces/places and, 715–716, 724, 725n5, 726n13; SRM and, 806; subjectivity/ies and, 716–717, 720, 724, 726n12; suicidality and, 117, 561–562, 567–568, 571nn7–8; suicide bombers and, 616n12, 632; suicide-prevention campaigns/biomedical interventions and, 625, 628, 713–714; temporality/ies and, 625–626, 714–717, 719, 721–724, 725nn4–8; tradition/s and, 625–626, 722–723, 726n10, 726n11; voiced/unvoiced effects and, 715, 720–721, 725n12 Sullivan, Winnifred, 339–340 Sunder Rajan, Kaushik, 14 supplementarity, and biotechnologies, 70–71 survival: overview of, 623–624, 626, 729–730, 739; addiction and, 317–318, 325, 327n1; Buddhist merits or bon and, 732, 734; collective identification and, 731; communities and, 736; continuity and, 730–731, 736; death and, 500, 626, 731–734, 740n2, 740n6; death and rebirth cycle or sam ˙ sāra and, 732; dharma and, 738, 741n20; disabilities and, 532, 534; dream and, 734, 738; economic/financial insecurity and, 729–730, 740n1; ethics of survival and, 698, 706–707, 732–733, 739; futurity and, 730, 732; ghosts and, 730, 732, 737; guardian spirit or neak ta and, 737–739, 740n16; historical narratives and, 730, 732–738, 740nn8–9, 740nn15–17, 741n18; Holocaust and, 736; justice/injustices and, 735; karma or kamm and, 626, 733–735, 740n4; of Katrina hurricane, 559, 568,

INDEX

•

871

survival (continued) 569, 570n2; language and, 734–735, 740nn7–9; life and, 500, 626, 730, 734, 736–738; lonely deaths of elders and, 663; loss and, 730; materiality and, 732, 735; memory and, 730, 732, 735–736; memory and ethics of survival and, 502, 706; (mis) fortune or kruh and, 735, 740n10; modernity and, 738, 739; nationalism and, 731, 735; police violence and, 500–502; poverty and, 729–730; psychic and, 733; recovery and, 736; religions and, 730, 732, 734, 738, 740n4, 740n16, 741n20; resilience system and, 730; risk and economic survival and, 14, 164–165, 296–298; rituals and, 626, 732–733, 735, 738–739, 740nn10–11, 741n18; self and, 741n18; shame and, 735; silence and, 735; social issues and, 732, 734, 739; space/ place and, 730, 736–739, 740n12, 740nn15–16, 740nn15–17; spiritual/sacred energy and, 730, 738–739; starvation and, 729–730; statistics and, 731, 740n2; suffering and, 731–733; symbolism and, 735, 738; temporality/ies and, 730–732; Theravadin Buddhism and, 626, 732, 734, 741n20; viktim and, 302–310, 313; wandering spirits/souls or pret and, 733–734 Sutton, Willie, 685 Swanson, Jeffrey, 206 Swazey, Judith P., 424 Swift, Jeremy, 580 Sylvain, Vincent, 565, 568 symbolism: adoptees and, 126; al-Qireyne in refugee community and, 149, 153–156, 157n4; biotechnologies of reproduction and, 71; colonialism and, 432; combatinjured soldiers’ rehabilitation and, 400, 406, 412; cosmetic surgery after breast and, 383, 385–386, 389, 395–396, 396; death and, 638, 640, 671, 709n12; disabilities and, 10; life/concept tension and, 450, 453–454, 459; mental health/ illness and, 511–512, 518; organ transplant programs and, 334, 419, 422–424, 428, 429n6; pain and, 187; racial health disparities and, 544; reproduction and, 41;

872

•

INDEX

reproductive health and, 55–56; semiotic square of breast cancer and, 383, 386–387, 395–396, 396; sexual/reproductive violence and, 133; survival and, 735, 738; valuation of lives and, 772; violence and adoptees and, 119 sympathy, and secular body, 338, 345, 348 Tabutin, Dominique, 786, 789, 804, 807 Tagore, Rabindranath, 617n19 “take-home” babies, and reproduction biotechnologies, 73, 77 “talisman” (hijab), and al-Qireyne in refugee community, 147–152 “talking to,” and kinship, 292–294 Talmage, David W., 355 Targoff, Ramie, 343–344 Taylor, Charles, 9, 338, 349 Tay-Sachs disease, 531–532 Technical Adoption Council, 108–110 temporality/ies: addiction and, 317–319, 321; cancer outpatient facility and, 677–678, 686–687; clock time and, 716–719, 724–725, 725nn4–6; colonialism and, 334–335, 431–433, 436–438; death and medicine/medical technologies and, 657; dreams and suicides and, 714–717; dying and, 698, 705, 706; evidence-based science and, 725n7; healers/healing and, 368–370, 372–378; hunger and, 576, 583, 594; Katrina-related deaths and, 447, 560, 565–567, 569; lonely deaths of elders and, 664; loss and, 476, 480; medicine/medical technologies and right-to-health litigation and, 260, 266; mental health/illness and, 513–518, 520, 522–523; normative death and, 656–659, 660n4; psychosocial treatment programs and, 302, 304–308, 310, 312; scientific knowledge and, 725n7; suicides and, 625–626, 719, 721–724, 725nn4–8, 726n11, 726n14, 727n15; survival and, 730–732 Teresa, Mother, 136 Terra, Eugenio, 263 thanatocracy, and youth/death relation, 758, 763 The, Anne-Mei, 697 therapy/therapeutic/s: al-Qireyne in refugee community and, 143; during colonialism,

335, 431–438; consumer versus patientcitizens and, 252–253, 256–258, 261–262; healers/healing and, 332, 369–370; health-care rights and, 256, 263; mental health/illness and, 513, 517, 519; obligations and, 271–273, 275–280, 283–284, 285n14, 286n18; psychosocial treatment programs and, 301–302, 304–306, 313; security and, 14, 68–71, 79; self-immolation and, 610; therapy groups and, 304–310, 314n2 thick description, 5, 32n6, 637 Thomas, Christine, 305–306, 308 thresholds of life, 23, 30–31, 594 Throop, Jason, 613 Timmermans, Stefan, 67 torture, 132, 134, 303, 305, 346–347, 349 touch (haptic), 199, 325–326, 390, 400, 406, 408–412, 625, 698, 700, 704–705, 708, 709n8, 710n19 tradition/s: al-Qireyne in refugee community and, 145; biomedical health care versus healers/healing and, 189; bureaucratic legitimacy and documents and, 101; colonialism and, 436–438; healers/healing and, 367–368, 370–372, 375–377, 379n3, 379n9; hijras and, 86; home birth practices and, 50–52, 54, 58–62; life/concept tension and, 457–460; mental health/illness and, 511; organ transplant programs and, 418, 421–422; psychosocial treatment programs and, 304–305, 308–309; secular body/ies and, 342; self-immolation and, 599, 609; suicides and, 625–626, 722–723, 726n10, 726n11; TCM and, 642; traditional birth attendants and, 42, 48, 52–55, 58–59, 62–63, 65n3; traditional birth attendants or dais and, 42, 48, 52–55, 58–59, 62–63, 65n3; “traditional” gathering/trading of forest produce and, 582–584, 586–587, 593, 595n5, 595n9; youth/death relation and, 626, 744–748, 761–762, 764nn1–10, 764n7, 765nn12–15, 765n13, 767n27 transformations, 648, 652, 655 transnational adoptions, 114–115, 117–119, 123–125, 127n1, 132, 134–137 transplant programs, organ. See organ transplant programs transracial adoptees/adoption, 122

trauma: al-Qireyne in refugee community and, 143–144, 155; birth mothers of adoptees and, 115–116, 120; colonialism and, 432, 435–436; PTSD and, 165, 302–304, 307, 310, 312, 413n8, 500, 733; TBI and combat-injured soldiers’ rehabilitation and, 401, 405, 413n8. See also violence Trauma Resiliency Model (TRM), 313, 314n5 traumatic brain injury (TBI), 401, 405, 413n8 triage, and waiting in clinics, 162, 168, 179–180, 182nn16–18 Tsing, Anna, 610 tuberculosis (TB). See DOTS TB program Turnbull, Colin, 579, 583–584 Turner, Victor W., 334, 419, 423, 745, 765n15 Uexküll, Jakob von, 19 uncanny, the, 717 unconscious, the, 156, 157n4, 385, 423. See also consciousness, and normative death United Nations, 130, 226–227, 301, 311, 775–776 unvoiced/voiced effects, 30, 202n17, 475, 477, 480, 489, 599, 614n2, 715, 720–721, 725n12 urban centers, 207, 212, 222–223, 228, 229n9, 735, 739, 779–780. See also rural areas; youth/death relation Valéry, Paul, 522 valuation of lives (worth of lives): overview of, 627, 770–772, 781; abolitionism and, 775; affects and, 627, 770, 777, 781; aspirations and, 627, 775; biocitizenship and, 772; biolegitimacy and, 7; biological and, 772; biopolitics and, 44, 772; care/caregiving and, 778–779; Christianity and, 627, 773–774; class/es and, 627, 776–778, 781; commodification and, 771–773, 776–777; death and, 560, 634, 644n12, 770–771, 773–778; Enlightenment and, 774; equality and, 627, 700–702, 772–775, 774–775, 777; ethics and, 627, 770–771, 773, 777–778, 781; family making and children and, 41; gender and, 627, 772, 781; humanitarianism and, 627, 775–777, 781; humanity and, 770, 772–774, 781; human rights and, 627, 774; inequality and, 627, 770–778, 780–781; institutional practices and moder

INDEX

•

873

valuation of lives (worth of lives) (continued) nity and, 4; justice/injustices and, 773, 780; life expectancy and, 779–781; lonely deaths of elders and, 664, 668; longevity and, 772; materiality and, 772, 778; military conflicts/operations and, 775–776; modernity and, 773–774, 781; mortality rates and, 779–781; (neo)liberalism and, 773; non-Christians and, 627, 773–774; North-South divide and, 776; precarity and, 780; qualitative terms and, 771, 780; quantitative terms and, 771, 780; race and, 627, 773–775, 773–776, 779–780; sacredness and, 627, 772–773, 777, 781; sacrifice and, 773–774; self and, 773; social issues and, 15, 772, 780–781; statistics and, 627, 777–781; suffering and, 777; symbolism and, 772 Valverde, Mariana, 102–103, 105 Vaughan, Megan, 595n4 vernacular zone, and colonialism, 334–335, 433, 437–438 Vernon, James, 577 veterans, and compensation, 399, 413n1 Victim Assistance Rehabilitation Program (the Rehab Program), 304–305, 310 victimhood/victimization, 206, 214, 478–479 videotape, and mediation and death, 624, 648–651 Vigh, Henrik, 489 Villermé, Louis-René, 778 violence: colonialism and, 334–335, 432–435, 438; gender, 30, 116, 120, 122, 130–132; gun violence and, 162, 205–206, 212–213; healers/healing and, 368, 375; individual/ world relation and, 444, 465–466, 468; intimacies and, 44; life/concept tension and, 443, 451–453; loss and, 477–478, 480; medicalization of, 207, 212; mental health/ illness, 162, 205–206, 210, 212–214; organized violence and, 301, 309; political violence and, 143, 301, 303; politics/ political power and, 346; psychosocial treatment programs and, 301, 303; sanity/”mad” and, 162, 205–206, 211–212, 214; schizophrenia and, 161–162, 205–207, 209–214; secular body/ies and individual violence and, 345–347; self-immolation

874

•

INDEX

and, 601–602, 607–610, 609–610, 612, 615n9, 617n22, 617n25; sexual assault victims and, 164, 289, 291, 296; soft violence and, 151–152; structural violence and, 14, 107, 161, 175; suicide bombers and, 616n12; symbolism and, 119; torture and, 132, 134, 303, 305, 346–347, 349; witnesses of, 501, 612; youth/death relation and, 743, 754–757, 762, 766n23. See also police violence; trauma virtue/virtuous death, and self-immolation, 448, 602–604, 610, 613, 616n12, 616n15 visible/invisible: adoptions and, 107; cancer and, 190; cancer outpatient facility and, 694–695; colonialism and, 435, 437; death and, 636, 638, 643; disabilities and, 525–526, 535; hijras and, 92; Katrinarelated deaths and, 569–570; lonely deaths of elders and, 669; mental health/illness and, 519; psychosocial treatment programs and, 303; racial health disparities and, 551; schizophrenia and, 207–208, 213; self-immolation and, 615–616, 618n28; valuation of lives and, 778, 781; waiting in clinics and, 168; youth/death relation and, 749, 761 Visveswaran, Kamala, 602 vitality: combat-injured soldiers’ rehabilitation and, 406; death and, 633–635, 644n9; dying and, 700; form/s of life and, 3–4; medicalization of dying and, 690; normativity and, 16–18, 32n10; pathology and, 16–18, 32n10; vitalism and, 32n10, 566, 631, 644n9; youth/death relation and, 743–744, 763 Vogler, Candace, 176 voiced/unvoiced effects, 30, 202n17, 475, 477, 480, 489, 599, 614n2, 715, 720–721, 725n12 vulnerabilities: addiction and, 318, 322, 325; al-Qireyne in refugee community and, 145; biopolitics and, 8; biosecurity and, 8; cancer and, 189; colonialism and, 6–7; combat-injured soldiers’ rehabilitation and, 408, 411; cosmetic surgery after breast cancer and, 388; everyday life and, 28–29, 33n13; HIV/AIDS and, 163, 217, 221; of human action, 33n13; hunger and, 584–585,

591; lonely deaths of elders and, 664; psychosocial treatment programs and, 301, 307; the real/unreal and, 28–29; secular body/ies and, 350; sexual assault victims and, 164, 289, 295, 297–298; sexual/ reproductive violence and, 140; and the state, 7–8 waiting, and the clinic: overview of, 161–162, 167–169, 180; belonging and, 161–162, 168, 176–177; bureaucracy and, 161, 168–171, 177–178; care/caregiving and, 161–162, 164, 168–176, 175–178, 180, 182n13; chemotherapy and, 170–172, 174–175, 180; citizenship and, 161–162, 168, 178–180, 181n3, 182nn15–18; commoditization of time and, 173, 181n9; compassion and, 181n12; continuity and, 177–178; dying and, 168; equality and, 167–168, 179–180; healers/healing and, 176; humanity and, 162, 175–176; inequality and, 168, 178–179, 182n15; intimacies and, 176; marketization and, 169–170, 181n6; methodology and, 169, 181n4; (neo)liberalism and, 161; NHS and, 167–168; oncology outpatient facility and, 677–678, 681–683; patient experiences and, 169–176, 181nn9–11; private versus public health care and, 176–178; queuing and, 168, 173, 176, 180, 181n9; reforms and, 176, 182n13; self and, 169; staffing and staff ’s responsiveness and, 170–171, 174–175, 177–178, 180, 181nn11–12; structural violence and, 161, 175; subject/ citizen tension and, 161–162, 168, 178–180, 182nn15–18; transitional space and, 179, 182n17; triage and, 162, 168, 179–180, 182nn16–18; visible/invisible and, 168 Waldron, Ingrid, 789, 805–806 Walker, Rebecca, 507 Walter Reed Army Medical Center, 333, 400, 413n5, 414n13. See also combat-injured soldiers’ rehabilitation Walzer, Michael, 32n6 wandering spirits/souls (pret), and survival, 733–734 war heroines (birangonas), 132–134, 139–140, 140n3

Warner, Cameron David, 616n15 wartime rape, 44, 130–132, 137, 139 water (shortages), and food, 447, 576–577, 586–587, 589–591, 593–594 waxing and waning, 3–4, 23, 30–31, 291–292, 331, 447–448, 527, 591–592 “we,” 28, 443–444, 489, 507. See also collective identification Weber, Max, 101, 110, 724 Weiner, Norbert, 356 Westry, Shelia, 395, 395 White, Bob, 762 whites, 162, 206–210, 212, 547–548, 551–554, 552, 779. See also blacks (African Americans) Whorton, Jim, 689 widows of martyrs, 475–476, 480–484, 487, 489, 490n1 “wild”/“distress” foods, and hunger, 584, 588, 592 William of Malmesby, 773 Williams, Robert, 212–213 Willis, John, 717–718 Winnicott, Donald W., 182n17 witchcraft, 747, 752, 754, 756–757, 759–760 witnessing/witnesses, and self-immolation, 448, 612 Wittgenstein, Ludwig: evidence, 4–5, 339, 341; form/s of life, 3, 21–26, 29–30, 476, 480; given/givenness, 464; grammar, 24, 26, 331, 480; individuality, 17, 614; “invented natural history,” 26, 42; language, 21–29, 334, 476, 480, 486, 489; secular body, 344; suffering, 16, 494; telling something and news to others, 644n1 wives of detainees, and loss, 475–476, 480, 484–490 Woeser, 614n4, 615n9, 617n25 Wolf, Susan, 153 Wood, David, 405–406 World Bank, 571n10, 785–786, 788, 805 World Health Organization (WHO): cancer and, 190; DOTS TB program and, 163, 233–234, 236, 244; FDCs and, 239; first-line drugs for TB abbreviations and, 247n1; health care rankings and, 779; health of populations rankings and, 753; IMR and, 821n14; Katrina-related deaths

INDEX

•

875

World Health Organization (WHO) (continued) classifications and, 562; pain management protocols and, 189; SRM and, 628, 784, 786, 788, 807–808, 808, 810, 812, 812, 814–816, 816–817, 821n14 world wars, 118, 333, 400–401, 413n6, 527, 699, 709n7 world/worldliness, 153, 342–345, 444–446, 448, 470–471, 471–472, 507, 636, 643 worth of lives. See valuation of lives XDR TB (extensively drug-resistant tuberculosis), 246 Yamada Masahiro, 672n3 Yaojie, Gao, 226–227 Yeh, Emily T., 615n7, 616n12 youth/death relation: overview of, 626–627, 743–744, 763–764; abandonment and, 758, 763; aesthetics and, 754, 761; affects and funerals and, 757; the body/ies and, 754, 757, 762–763; cadaverous or cadavéré and, 749, 757–758, 765n16; Camp Luka and, 748–750, 753–754, 756, 758, 765n20; cemeteries/burials and, 626, 743–744, 748–754, 751, 757–758, 760, 760, 765nn16– 20; cemetery city or cité cimetière and, 749, 763; child mortality and, 753, 765n20, 766n22; Christianity and, 755, 759–760, 766n25; colonialism and, 748–749, 751, 766n23; commodification and, 750, 755, 765n20, 766n24; copulation and, 747, 755, 756, 762–763, 765n13; corpse and, 743, 746–748, 755–756, 758, 760–763, 765n13; corpus vile and, 743, 758; death and, 626, 627, 750, 751–754, 757, 760–761, 763, 767n26, 767n27; “defamiliarization” or ostranenie and, 743–744, 763; disorder and, 754–757, 766nn23–24; documentary and, 758, 765n17; embodiment and, 763; entropology and, 757; ethics and, 743, 757, 760–762, 763; funerals and, 744, 748, 750, 754–757, 756, 760, 766n21, 766n24, 767n26; futurity and, 627, 761–762; grave diggers and, 750, 757, 765n20; humanity

876

•

INDEX

and, 763; identity and, 759, 761–763; IMR and, 766n22; infrastructure and, 748–749, 762–763; intergenerational conflict and, 626, 754–761, 764, 766nn24–25; intersubjectivity/ies and, 460, 757–758; intimacies and, 743, 750, 757, 762; kinship and, 744–747, 751–752, 754–757, 764n2, 764n5, 764n7, 764n9, 766n24; life and, 626–627, 743, 749, 750, 753, 763, 767n27; local actualization and, 627, 762; loss and, 743, 752, 763; ludic and, 626–627, 752, 754, 762–763; materiality and, 744, 748–749, 754, 757, 760–761, 763; media and, 751, 753, 760, 767n26; modernity and, 758, 762; morgues and, 748, 752, 760–761; mortality rate and, 753; mourning ritual and, 744–748, 751–757, 758, 761–763, 764nn1–10, 765nn12–15, 766n21, 766n23; necropolitics and, 758, 764; (neo)liberalism and, 759; nocturnal wake ritual and, 744–746, 748, 752, 764n7; performativity and, 626–627, 755–756, 762, 766n24, 767n27; politics/political power and, 626, 743, 755, 757–758, 761, 764, 766n25; population statistics and, 753; public space and, 626, 743–744, 752, 760, 766n21, 766n23, 767n26; sacrifice and, 758–759, 763; social issues and, 743, 752–753, 755, 758–759, 761, 766n25; street children or bashege and, 760; thanatocracy and, 758, 763; traditional death-related rituals and, 626, 744–748, 761–762, 764nn1–10, 765nn12–15, 767n27; violence and, 743, 754–757, 762, 766n23; visible/invisible and, 749, 761; vitality and, 743–744, 763; witchcraft and, 747, 752, 754, 756–757, 759–760; “youth gangs” or kuluna and, 754, 760, 766n23, 766n25. See also children Zelizer, Viviana, 772 Zhang Ke, 227 Ziegel, Ty, 414n14 Zigon, Jarrett, 613 Zook, Darren, 577