HIV Exceptionalism: Development through Disease in Sierra Leone [1 ed.] 0816692424, 9780816692422

Table of contents :
Dedication
Contents
Preface
Introduction. HIV Exceptionalism in Sierra Leone: Christiana’s Story
I. The Exceptional Life of HIV in Sierra Leone
1. The HIV Industry in Postwar Sierra Leone
2. Exceptional Life, Exceptional Suffering: Enumerating HIV’s Truths
II. Becoming HIV-Positive
3. The Imperative to Talk: Disclosure and Its Preoccupations
4. Positive Living: Hierarchies of Visibility, Vulnerability, and Self-Reliance
III. HIV and Governance
5. For Love of Country: Model Citizens, Good Governance, and the Nationalization of HIV
Conclusion: The Future of HIV Exceptionalism
Acknowledgments
Notes
Bibliography
Index
About the Author

Citation preview

HIV Exceptionalism

This page intentionally left blank

HIV Exceptionalism Development through Disease in Sierra Leone

Adia Benton

A Quadrant Book

University of Minnesota Press Minneapolis London

Quadrant, a joint initiative of the University of Minnesota Press and the Institute for Advanced Study at the University of Minnesota, provides support for interdisciplinary scholarship within a new, more collaborative model of research and publication. http://quadrant.umn.edu.

Sponsored by Quadrant’s Health and Society group (advisory board: Susan Craddock, Jennifer Gunn, Alex Rothman, and Karen-­Sue Taussig) and by the Center for Bioethics at the University of Minnesota. Quadrant is generously funded by the Andrew W. Mellon Foundation.

A different version of chapter 2 was previously published as “Exceptional Suffering? Enumeration and Vernacular Accounting in the HIV-­Positive Experience,” Medical Anthropology 31, no. 4 (July 2012): 310−28. Medical Anthropology is available online at http://www.informaworld.com. Copyright 2015 by the Regents of the University of Minnesota All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher. Published by the University of Minnesota Press 111 Third Avenue South, Suite 290 Minneapolis, MN 55401–­2520 http://www.upress.umn.edu Library of Congress Cataloging-in-Publication Data Benton, Adia.   HIV exceptionalism : development through disease in Sierra Leone / Adia Benton.   Includes bibliographical references and index.   ISBN 978-0-8166-9242-2 (hc : alk. paper) — ISBN 978-0-8166-9243-9 (pb : alk. paper)  1. HIV-positive persons—Care—Government policy—Sierra Leone.  2. AIDS (Disease)—Government policy—Sierra Leone.  3.  Health facilities—Sierra Leone—Finance. 4.  Federal aid to health facilities—Sierra Leone.  5.  Public health—Anthropological aspects—Sierra Leone.  I.  Title.   RA643.86.SSB46 2015  362.1969792009664—dc23

2014019918

Printed in the United States of America on acid-­f ree paper The University of Minnesota is an equal-­opportunity educator and employer. 21 20 19 18 17 16 15    10 9 8 7 6 5 4 3 2 1

For Salma, Pauline, and Bessie Mae

This page intentionally left blank

Contents Preface ix Introduction. HIV Exceptionalism in Sierra Leone: Christiana’s Story

1

I.  The Exceptional Life of HIV in Sierra Leone 1. The HIV Industry in Postwar Sierra Leone

27

2. Exceptional Life, Exceptional Suffering: Enumerating HIV’s Truths

42

II.  Becoming HIV-­Positive 3. The Imperative to Talk: Disclosure and Its Preoccupations

61

4. Positive Living: Hierarchies of Visibility, Vulnerability, and Self-­Reliance

89

III.  HIV and Governance 5. For Love of Country: Model Citizens, Good Governance, and the Nationalization of HIV

117

Conclusion: The Future of HIV Exceptionalism

138

Acknowledgments 147 Notes 151 Bibliography 159 Index 173

This page intentionally left blank

Preface

The civil war in Sierra Leone (1991–­2002) lasted more than eleven years and left over 50,000 people dead. In early 2003, in the war’s aftermath, 500,000 Sierra Leoneans—­10 percent of the population—­were still living outside the country, and hundreds of thousands were displaced from their homes. More than 3,000 houses in 300 towns and villages were destroyed by the war. Nearly 80 percent of health posts needed rehabilitation or reconstruction and more than 60 aid agencies and nongovernmental organizations (NGOs) were on the ground, trying to facilitate and assist in this process. Post-­conflict Sierra Leone witnessed an influx of aid from the international community. Leading agencies, such as the United Kingdom’s Department for International Development (DfID), United Nations High Commissioner for Refugees (UNHCR), United Nations Development Program (UNDP), and United Nations Mission in Sierra Leone (UNAMSIL), devised a four-­Rs plan—­repatriation, reintegration, rehabilitation, and reconstruction—­for rebuilding the country. Reconstruction costs were estimated to be more than $16 billion per year beginning in 2002 (Baker and May 2004, 36–­37). Approximately $45 million was allotted for reintegrating former combatants and improving the management of the diamond sector (www.usaid.gov). Through the efforts of a number of NGOs—­who acted as subcontractors to the United Nations and Western donor governments—­health clinics and educational facilities were rebuilt and staff were trained. Education for younger women and men was instituted in camps, but many were unable to afford the primary and secondary schools that were reestablished in the post-­conflict period. Shorter-­ term vocational education and skills training initiatives were often packaged with demobilization and reintegration projects. At the end of the war, Sierra Leone ranked second from the bottom of the UNDP Human Development Index (176th out of 177 countries). Post-­conflict recovery has been a slow process, but many development ix

x   · Preface

indicators show some improvement. In 2011, the life expectancy in Sierra Leone was 57 years (www.cia.gov). Other development measures present a similarly grim but slowly improving situation: approximately 42 percent of Sierra Leonean adults are literate, and more than half of the population is considered to be living in poverty, with per capita income in 2012 at $1,400. Three-­fourths of Sierra Leone’s population between the ages of eighteen and thirty-­five are unemployed (Baker and May 2006, 225), and even when jobs are available, the wages are particularly low, given the inflated prices of common goods like rice, fuel, and housing. Despite the dire conditions faced by a majority of Sierra Leoneans in the post-­conflict era, one statistic defied expectations: Sierra Leone has a relatively low prevalence of HIV/AIDS. During the war, the expert consensus was that war and HIV/AIDS always conspired against affected populations and constituted a “double emergency” (Lawday 2002). When HIV prevalence in conflict-­affected Sierra Leone was lower than anticipated, experts argued that normalization in the post-­conflict period could lead to increased HIV transmission, although this has yet to transpire (IRIN 2005; Spiegel 2004). Most recent estimates put the country’s HIV prevalence at 1.5 percent, which is essentially no different than the prewar figures from 1999 and significantly lower than figures from the 1980s and mid-­1990s (Dunham 2007; IRIN 2005; Spiegel 2004; Spiegel et al. 2007). Unlike many of the countries of southern and eastern Africa—­but very much like its West African neighbors—­Sierra Leone has a low prevalence of HIV spread throughout the general population. Despite these low numbers, however, Sierra Leone—­like most African countries—­benefits from a large influx of foreign aid money specifically targeted at HIV/ AIDS prevention and care programs. This foreign aid comes, in large part, because international donors believe HIV is an exceptional condition, requiring a focused, intensive response that is unlike any directed to other diseases. As Peter Piot, the former head of UNAIDS, argued, “This pandemic is exceptional because there is no plateau in sight, exceptional because of the severity and longevity of its impact, and exceptional because of the special challenges it poses to effective public action” (Piot 2005, 2). The exceptional status accorded to HIV, along with the large amount of funding appropriated for HIV-­specific projects, has produced the largest vertical public health program in history (England 2007a; England 2007b; Pisani 2008). While some experts critique this notion of exceptionality, it is still the primary idea

Preface  ·  xi

around which AIDS programs—­including those in Sierra Leone—­are organized. “Vertical” programming is fairly common in public health; most disease eradication, elimination, and control programs rely on some version of this disease-­specific model. Unlike disease eradication programs, HIV is not only ideologically vertical but also methodologically horizontal in its scale, scope, and reach. “Horizontal” methodology refers to the wide range of on-­the-­ground approaches taken to address HIV as an exceptional disease: medical care, antistigma education, support groups, income generation, education, food supplements, and skills training, among others. In the dire social and economic circumstances of postwar Sierra Leone, these support services are welcomed; however, their requirements often seem difficult, unrealistic, or contradictory to those who choose to participate. In addition, all the well-­f unded programming created to support a small number of HIV-­positive individuals has created a privileged minority of the afflicted, a situation that threatens the health and well-­being of the vast majority of people who are in need of caregiving services but who are not HIV-­positive. Exceptionalism in AIDS programs creates an economy of suffering, whereby those who have HIV can claim unique hardship in a country where daily suffering is the norm. Nongovernmental and governmental organizations created support groups for HIV-­positive persons in Freetown to foster solidarity, mutual support, and self-­help among those living with HIV/AIDS. Because this system of care was created from a separate vertical funding stream, it operates independently of other health services, leading to an unintentional marginalization. Within these marginalized programs, HIV-­positive individuals compete for the resources—­and even prestige—­that these organizations provide by enacting their programming requirements, which include performing their “unique” suffering and vulnerability, rendering their HIV status visible, and acting out various forms of self-­sufficiency. The people who apply the concepts of these HIV programs reimagine, rework, and deploy them self-­referentially, often in unexpected ways. HIV programs have given rise to new forms of identity and social relations based on biological (in this case, HIV) status. In the negative extreme, they have even spurred “biosociopathy”—­or antisocial and discriminatory relations—­related to HIV serostatus (Kalofonos 2010). AIDS programs have not only created opportunities for HIV-­positive individuals to forge new personal identities and social relations, but also

xii  · Preface

to consider their relationship to the nation state as well. The staff members who work for HIV support groups express the need for Sierra Leoneans to care about the welfare of their country and to be sexually responsible in service of the country’s economic development and social progress. The discourses that link Sierra Leone’s development, governance, and HIV are profoundly gendered, placing the majority of the burden on girls and women. The idea of an individual’s responsibility to the state is especially salient in the context of postwar rebuilding and development. In addition to considering their own responsibility to Sierra Leone, HIV-­positive individuals use support groups as outlets to express their desires and fantasies about recognition and care from their government in return. Members of HIV support groups are aware of the ephemeral and distant funding sources that support their workshops, their food rations, and the medicines that keep them alive. To deserve the continued support of wealthy donors who, in turn, support the government and NGOs, they understand that they must be good biological citizens of a global order, as well as within the context of the state. Still, these responsibilities do not keep many of them from imagining a state and global apparatus that better cares for their country’s needs, not just the small minority of HIV-­ positive individuals who lead “exceptional lives.”

Introduction HIV Exceptionalism in Sierra Leone: Christiana’s Story

I first met Christiana in mid-­2006, at a social club in Freetown, Sierra Leone. A mother of two who had married her childhood sweetheart, Christiana had almond-­shaped eyes and an infectious smile that immediately endeared her to me. Within days of meeting, she witnessed my unsuccessful attempts to hail a shared taxi and gave me a ride home. Later that day, she invited me to join her vibrant circle of friends. She hosted ladies’ nights at the Lagoonda nightclub, where I joined Christiana’s group to gossip about acquaintances’ (seemingly) clandestine love affairs and dance to the “Electric Slide.” On Sundays, I would meet the ladies at De Base beach bar, where we enjoyed drinks and snacks with sand under our feet, the sights and smells of Atlantic surf blending with smoke from the grill, and the latest music from Sierra Leone and abroad. After some months of making new friends at these gatherings, I became too busy with my fieldwork to keep up with these late nights. Soon, Christiana was also unable to commit to these activities, because she had decided to return to school. She began a college preparatory course at a local university and lost touch with many of our other friends. I spotted her a few times after—­driving around town in her old, beaten-­up car or out shopping—­and I noticed that she had lost a lot of weight. When we finally had time to talk together at a party, I inquired about her weight loss. She told me that she had been dieting to lose some of her baby weight. But, she confided, she was now trying to gain some of the weight back, because her father said she “looked sick. Like an AIDS patient.” Laughing, she grabbed her plate to show me that she was eating healthy portions to regain some of the weight she had lost. In late August 2007, my research assistant and roommate, Leah, informed me that Christiana had fallen ill. Leah went to visit her at the 1

2  · Introduction

hospital—­incidentally, one of my observation sites—­with two of her friends. When Leah returned, she reported on Christiana’s condition. Shaking her head, she described how thin she was, comparing her to Mary, the achingly thin woman who cleaned our house once a week. We were all shocked. Christiana—­once the life of the party, vibrant, funny, beautiful, and plump—­was now skin-­and-­bones, unable to eat, and too tired to walk even a short distance. A few days later, I visited Christiana in the hospital. Armed with bottles of imported juice from my neighborhood supermarket, I peeked into dark hospital rooms, where tall IV drips stood awkwardly on freshly mopped linoleum floors. Hospital staff moved in and out of the rooms as they checked on patients. As I reached the end of the open air corridor, I heard my name. “Adia!” Startled, I peered into one of the rooms. “I am in here,” Christiana cried. I thought I would have recognized Christiana immediately, despite my friends’ warnings to the contrary. I didn’t. She was so thin. I grinned widely, trying to hide my surprise. The formerly shapely mother of two had tucked her shoulder-­length hair under a cotton scarf and shrouded her body in a patterned flannel nightgown and robe. Christiana was sitting up, dangling her feet off the hospital bed. She shared the room with an older woman who fell in and out of consciousness, moaned in pain, and every so often, scanned the room for a female relative. After a few cycles of the old woman’s waking and watching, the relative returned and took her to the bathroom. When the two women were out of earshot, Christiana whispered, “I don’t like it when she’s in here. I worry that she’s going to die in the night.” Christiana described how she had become ill some months before and checked into a private clinic on the outskirts of town. She received a blood transfusion, and eventually, she got better. When she checked out of the clinic, however, she noticed that hepatitis B had been checked on her medical chart. Why had they not told her she had hepatitis, she wondered. Soon after leaving that clinic, she became sick again. This time, her abdomen became swollen, and her skin and the whites of her eyes turned yellow. Her doctors told her that she was severely anemic and needed another blood transfusion. She felt better after the transfusion, but she didn’t feel quite the same. At this point in her story, I asked her, “Did you have an HIV test?” She answered softly, “Yes, I wondered about that, too. I took the test. But it

Introduction  ·  3

was negative.” She continued talking about hepatitis and her other ailments and how she kept occupied when visitors were not allowed. I checked her prescriptions against a tropical medicine book and an information sheet about hepatitis that I had found on the Internet. As we chatted, a doctor I recognized from the HIV/AIDS counseling office entered with some medical students and interns. He wrote something on her chart and briefly discussed her case with his students, all of whom had pens and pencils poised to paper. The students listened intently as he reviewed her case, and he quickly transitioned to the next set of cases they would be seeing on rounds. As he turned to leave, I interrupted: “Excuse me, Dr. Sahr? Your patient was wondering what she’s being treated for.” “She’s being treated for a chest infection and anemia. That’s all. Nothing to worry about.” He smiled at me and again turned to leave. Calling after him, I asked, “And not hepatitis?” “Nooooo,” he droned with certainty. “She doesn’t have hepatitis.” Dr. Sahr returned to the room to answer my question more fully. He explained that she had antibodies to hepatitis, but not the antigen. He assured me that he had checked the results himself. He reviewed her chart again and confirmed: Yes, Christiana had pneumonia. “How do you explain the jaundice, doctor?” I asked. “Oh, that was probably hemolysis. The antibiotics should easily clear her chest infection, and she will eventually regain her strength.” When I shared this information with Christiana, she seemed relieved. She explained that she had lost her appetite in part because she had worried that she would die of hepatitis. From what she had been told (by people like me, who had the resources to do some quick research on hepatitis B), she knew there was no treatment for the virus. I passed a few hours at Christiana’s bedside. More visitors streamed in. Among them was a physician friend who came to examine Christiana’s prescriptions and explain the purpose for each item: the B-­v itamins were for energy, antibiotics for the infection, iron to help rebuild the blood, and an antidepressant to help with her mood. Christiana’s husband and other friends came with food, drinks, and reading material. By the end of the visit, I was relieved that Christiana seemed to be doing better than Leah and others had suggested. I returned home to tell my roommates that she looked better than I expected and was in good

4  · Introduction

spirits. Over the next few days, visitors brought me news about her improving condition. A week later, I returned to the hospital to deliver some items Christiana had requested—­headphones for her radio and a couple of long novels—­to help to alleviate her anxiety about her remaining days in the hospital. The runoff elections were imminent, and she wanted to be at home in case violence erupted. Later that week, she was able to leave the hospital. Friends reported that she was able to walk down the corridor without assistance and that she had regained her appetite. Early on a mid-­September morning, Leah told me that Christiana had died. I was terribly shaken by the news, and I canceled my plans for the day so that I could grieve with the family. This was my first adult wake in Sierra Leone, and I did not know what to do or how to behave. Luckily, I was able to find three other women I could accompany. When we arrived at the wake, dozens of people were waiting outside, talking to Christiana’s siblings and consoling them. Recognizing her younger brother and sister from previous meetings, I extended my condolences. My heart dropped when I leaned in to embrace her husband. Inside, family and friends sat quietly in chairs and on couches pushed against the walls to form a wide semicircle. As I settled into a chair facing the outside porch, a woman wailed in the back of the house. It turned out to be Christiana’s mother, whom I will call Auntie Agnes. The madam, dressed in floor-­length, full-­bodied dark-­blue dress and head-­tie, entered with a woman flanking her on either side. She sat weakly between two relatives on a weathered couch. One by one, new visitors approached her. When my turn came, I curtsied deeply at her feet and avoided making eye contact—­in the way that one often addresses elders—­and expressed my condolences. She greeted us through her tears and began recounting the events that led to Christiana’s death. The night before, Christiana had been in the hospital for yet another blood transfusion for her severe anemia. When the nurses came with the blood, Christiana noticed that the blood “looked darker” than the supply she had received before. She asked the nurses to make sure that they were giving her the correct blood. The nurses protested, began the transfusion, and left the room. Within a few seconds, Christiana told her brother that she felt cold. She couldn’t breathe, and a rash began to form on her skin. Christiana’s brother frantically called the nurses to come to his sister’s aid, but they ignored his plea, stating that Christiana was simply being a difficult patient.

Introduction  ·  5

Her brother’s desperate cries must have finally swayed them, because the nurses eventually came to her bedside. When they saw the rash, they stopped the transfusion and administered antihistamines to counteract what they recognized to be a transfusion reaction. The nurses immediately sent her brother into town to buy more blood, but by the time he reached the edge of downtown—­a five-­minute drive from the hospital—­ the nurses called and told him to come back. Christiana had died. Auntie Agnes clarified Christiana’s uncertain diagnosis for the roomful of mourners: “She had hepatitis B. We called one of the hepatitis experts in town, and he told us that she might be able to get some medicine for the right kind of hepatitis, but with the hepatitis B, her system should clear it. And then . . . Oh, that blood. They told us that she lost so much blood. Where did all that blood go, Lord? We tested her for the HIV/ AIDS, but she didn’t have HIV/AIDS. She didn’t have HIV.”

HIV’s Exceptional Life in Sierra Leone Judging from Auntie Agnes’s insistence that Christiana had not been infected with HIV, one would assume that HIV/AIDS was a widespread problem in Sierra Leone. Yet, despite an eleven-­year war (1991–­2002) characterized by high rates of sexual violence, massive displacement, economic instability, and an influx of foreign troops from high-­prevalence countries (all presumed risk factors for increased HIV transmission in the NGO literature), the prevalence of HIV/AIDS in Sierra Leone is actually quite low. Most recent estimates peg the country prevalence at 1.5 percent, which is essentially unchanged from seroprevalence figures in 1999 and significantly lower than sentinel surveillance figures collected during the 1980s and mid-­1990s (Dunham 2007; IRIN 2005; Spiegel 2004; Spiegel et al. 2007). Unlike many countries in southern and eastern Africa, but similar to its West African neighbors, Sierra Leone is a low-­prevalence country with a generalized epidemic.1 Yet, as Auntie Agnes’s and Christiana’s worries about HIV and AIDS demonstrate, the disease remains an underlying concern for Sierra Leoneans—­despite its failure to manifest as a widespread health problem.2 When I first arrived in Sierra Leone in 2003, efforts to rebuild after the decade-­long war were visible at every turn. Many of these efforts were signaled by widespread educational campaigns and outreach activities. There were visible signs of the awareness raising about HIV/AIDS in the

6  · Introduction

form of billboards and signs posted at the edges of towns and on major thoroughfares. However, this response was deemed insufficient by international observers of Sierra Leone’s epidemic (UNAIDS 2007). By early 2005, a UNAIDS office had been erected in Freetown to help focus the response and ‘mainstream’ it into existing poverty reduction and public health initiatives. The HIV/AIDS response in Sierra Leone closely resembled those responses carried out elsewhere. Marketing campaigns employing radio, billboards, and public events and parades were scaled up. The messages were heard far and wide, as they drew on existing ideas about HIV/AIDS common among a population that had seen the ravages of the disease in the 1980s through various media and communication channels. Images of emaciated young men and women who had fallen terminally ill in the prime of their lives—­in addition to the moral panic around sexuality during the early years of the epidemic—­persisted in collective memory. Writing about social life in the war’s aftermath, newspaper editorial staff communicated deep anxieties linking economic deprivation, shifting values and sexual norms, and cultural loss. Surprisingly—­at least when I first began reading the local newspapers regularly—­t hese anxious editors explicitly mentioned HIV/AIDS, a “coming plague,” and judged young women to be sexually promiscuous, economically dependent on older men, and careless toward their nation’s development. Similar anxieties were expressed in a variety of additional sites. Literature from a local Pentecostal church, for instance, featured testimony by (formerly) HIV-­positive people who were cured through prayer and the pastor’s healing hands. A college student described how, when she needed pocket money, she would lobby local NGOs for funding to educate her neighbors about HIV/AIDS and sexual health. A focus group’s debate over the existence of AIDS was settled when one of the participants exclaimed: “Have you seen the billboards? The radio ads? They wouldn’t be spending this much money on something that doesn’t exist. In other countries, it’s a big problem.” HIV and AIDS are also a concern for the wide range of international actors that were involved in development and postwar reconstruction efforts in Sierra Leone. During the war, it was taken as fact that violent conflict and HIV/AIDS conspired against war-­affected populations and constituted a “double emergency” (Lawday 2002). When prevalence in conflict-­affected Sierra Leone proved to be lower than anticipated, ex-

Introduction  ·  7

perts argued that stability and normalization in the post-­conflict period might lead to an increase in HIV transmission (IRIN 2005; Spiegel 2004). While the evidence suggesting no obvious link between HIV/AIDS and conflict accumulated during this period, the persistent cultural significance of AIDS in the global imagination, and the fear it inspired, helped keep HIV/AIDS high on the national public health agenda. The potent fear that HIV would spread to epic proportions in the post-­conflict period resulted in large capital input for programs addressing HIV/AIDS. Over a five-­year period, nearly $80 million was allocated to the government and nongovernmental organizations in Sierra Leone for HIV/AIDS prevention, care, and treatment. In 2004, $8 million of the $14 million allotted to health was spent on HIV prevention outreach efforts (Bate 2006).3 During my fieldwork in 2006–­07, at least thirty nongovernmental organizations in Freetown, a city of one million people, administered programs that included HIV prevention, suggesting the powerful hold that HIV also has on the development imaginary 4—­and its funding streams. The situation in Sierra Leone is not atypical. HIV/AIDS programs occupy a unique space in development and public health initiatives worldwide—­at least in the parts of the world that are often selected for development and public health and humanitarian interventions. Since critical social scientists and experts have suggested that various forms of inequality—­from poverty to patriarchy—­shape HIV risk, HIV programs have been integrated into numerous development and health activities. Such programs also command well-­developed professional, infrastructural, and financial “streams” that flow vertically, which is to say within disease-­specific programs. This is in contrast to programs that look more holistically at public health problems. In this book, I refer to this situation as “ideological verticality,” in which HIV is exceptional and requires separate funding, programs, and personnel. This creates a “silo effect” in ideological terms. Yet, it also produces what I call “methodological horizontality,” or the tendency of HIV/AIDS to creep and seep into all kinds of development and health programming. Annual funding for AIDS programs in low-­and middle-­income countries rose from US$300 million in 1996 to US$10 billion in 2007 (UNAIDS 2008). In 2008, international donors spent $13.7 billion on HIV/AIDS prevention and treatment programs in poor countries (UNAIDS 2009). Much of this funding increase can be attributed to fierce advocacy by

8  · Introduction

AIDS activists and commitments by international NGOs, UN agencies, and community-­ based organizations that pressured pharmaceutical companies to lower the prices of antiretroviral drugs.5 Although HIV-­positive individuals, public health advocates, and administrators of health and development programs welcomed the robust increases in HIV/AIDS spending, there were those who questioned the efficiency, effectiveness, and even the ethical underpinnings of HIV-­ specific aid. A small group of vocal critics lamented both the increasing numbers of new HIV infections and the increasing budgets (England 2007b; England 2008; Morris 2008). Specifically, they asked whether HIV exceptionalism—­t he idea that HIV/AIDS is always a biologically, socially, culturally, and politically unique disease requiring an exceptional response—had failed to prevent new infections and reduce AIDS-­ related deaths. Had such programs, which considered HIV to be not only a major public health crisis, but also a problem of development and for development, made health systems function better (Shiffman 2008)? Most of these critics say no. In essence, these critics were wary of the assumptions guiding both HIV programs’ ideological verticality and their methodological horizontality. According to these expert-­critics, ideological verticality draws attention away from other priorities, including strengthening health care systems and meeting primary care objectives (Oomman et al. 2008; Shiffman et al. 2009; El-­Sadr and Abrams 2007). It may also unwittingly sustain the stigma and marginalization that HIV programs aim to combat (Jewkes 2006). They also criticized the wide range of approaches for addressing HIV as an exceptional disease: economic independence for women, education for girls, food supplements, and skills training, among others. All can be good and worthy interventions on their own, but must they be harnessed to HIV for their value to be recognized by donors? So, in addition to being vulnerable to critiques of verticality that foreground the narrowness of vision and lack of significant impact, HIV programs are also susceptible to broader criticism of development programs. These critiques focus on whether the cumulative “social engineering” projects of development produce changes in knowledge, attitude, behavior, and HIV incidence. The same critiques also raise questions about whether specific program approaches contributed to program failures and successes in shifting norms and values, and whether aspirations expressed in funding proposals were unrealistic.

Introduction  ·  9

This book is an effort to describe a complex set of relationships between transnational governance, as exemplified by the HIV treatment regime and global health projects, more generally, and subjectivity, as shaped by this same regime (and others associated with post-­conflict development). Overlapping biopolitical arrangements, in which certain truths are defined and deployed in the name of fighting HIV/AIDS—­and the kinds of people who are “made up” during this process—­are also the focus of this book (Hacking 2006). In this book, I ask: If HIV exceptionalism, as ideology, guides funding and interventions, what enabled and facilitated its conception, circulation, and penetration in Sierra Leone? Moreover, if these interventions have not resulted in the behavioral, social, and cultural changes presumed to curb new infections and prevent deaths, what changes are instilled through these encounters? In short, what kinds of sociality and selves do these programs create? Upon what socialities and subjectivities do they depend? The argument of the book is primarily that the collection of HIV interventions that aim to mitigate the effects of the disease among HIV-­ positive people (particularly those interventions focused on modifying disclosure practices, changing sexual behavior, and encouraging visibility) entrench and reinforce HIV’s exceptional status. In addition to providing treatment options for people who meet certain clinical criteria, HIV care and support programs define and shape the process of “becoming HIV-­positive.” Learning how to become HIV-­positive entails rehearsing disclosure narratives and keeping up “appearances” (in the many senses of the word), which in turn enable and facilitate subjective experiences of exceptionality and hierarchy among the HIV-­positive. Exceptionalism also reproduces and reflects global hierarchies in relationships between the various donors, NGOs, and government agencies and community-­ based organizations that comprise the AIDS industry. A word of clarification is in order here. Although it at times appears that NGO presence —­with its logo-­emblazoned Land Cruisers, office buildings, gated residential compounds, and billboards—­was overwhelming and loomed large in everyday social life, it was not an overdetermining presence. It was, however, a deeply influential presence for which many Sierra Leoneans expressed some ambivalence. For some, NGOs represented an avenue for economic opportunity, employment, and social change; for others, they constituted a threat to existing social and cultural institutions. There is also a way that international NGOs and donors were

10  · Introduction

simply part of an ever-­shifting institutional and cultural landscape, in which they exerted varied levels of influence on social, economic, and political realms of everyday life. Rather than overdetermining subjectivity, some aspects of HIV/AIDS programs resonated quite strongly with existing notions of selfhood and the aspirations, fantasies, and desires associated with them. Other aspects of these programs came into conflict with personal aims and desires. While HIV programs do influence and shape self-­presentation, opportunity structures, and “structures of fee­ ling,” they do not overdetermine them.

AIDS Programs as Development Programs The global health and HIV/AIDS industries, like development programs, have their own distinctive sociocultural and political economic practices. Commenting on earlier anthropological investigations of development—­ which have primarily focused on development discourses, effectiveness, or ideologies—­Jean-­Pierre Olivier de Sardan warns against paying sustained anthropological attention to “saving or condemning, deconstructing or reforming” development (Olivier de Sardan 2005, 2). Instead, he understands development to be a social phenomenon. From this standpoint, he argues, one can intervene based on thick description and analysis. Thus, to take Olivier de Sardan’s prescription for an anthropology of development seriously—­and I do—­is not to ask only whether a program’s effects match its intentions (they often do not). Nor is it particularly valuable to ask only whether perceived failures could have been averted with better managerial apparatuses, enhanced “capacity,” more sensitization, better cultural awareness, or fewer “cultural barriers” (projects with all these attributes can and do fail to meet their objectives). Rather, anthropologists are better served when they attempt to understand and interrogate such projects as social phenomena and processes. To talk of “processes” is to “convey an analytic emphasis on continuous production and construction” of cultural norms, ideas, and values around a particular issue (Moore 1987, 729). Understanding these processes in Sierra Leone (or elsewhere) requires two major projects: mapping the complex networks of governments, nongovernmental organizations, ideas, commodities, and forms of knowledge that comprise the response to HIV/AIDS; and describing the ways

Introduction  ·  11

in which these networks influence individual lives. Put another way, such a study “is at once a political anthropology, a sociology of organizations, an economic anthropology, a sociology of networks, and an anthropology of conceptions and belief systems” (Olivier de Sardan 2005, 2). Certainly studying HIV programs and the people who encounter them falls into this category. A number of institutions are engaged in managing the epidemic, ranging from international donor agencies, government agencies, and nongovernmental organizations. Modes of state governance are shaped by international imperatives for record-­keeping, hierarchical organizational structures, planning models, and the like. Such programs occur under the aegis of “the gift” in which economic anthropological notions of exchange, reciprocity, and goodwill are implicit conditions of global health aid. As mentioned previously, complex networks of institutions, communities, and individuals are engaged in a range of activities through these programs. A detailed ethnography of these networks entails uncovering the nodes that enable certain kinds of health interventions in “resource poor” places. And the belief systems and conceptions about HIV/AIDS, the HIV-­positive, the “at-­risk,” and the many bureaucrats responsible for carrying out prevention, care, support, and treatment, shape how these interventions take root and are perceived locally. This anthropological project of mapping networks, institutions, beliefs, and conceptions must simultaneously hold subjective, lived experience in focus. When experience is held in focus, it is possible to uncover and interrogate the fantasies, motivations, and desires that shape development initiatives on the ground. Such a move offers the possibility of critique from the perspectives of people whose lives are affected by the large-­scale social processes that influence the HIV apparatus. Christiana’s story illuminates many of these dimensions, as she attempted to seek care in a system “cannibalized” by HIV (Nguyen 2010, 181). And finally, to return to processes: Sally Falk Moore suggests that identifying and analyzing diagnostic events is important for the anthropologist adopting a processual perspective that “treats fieldwork as current history.” By beginning with the story of Christiana as a diagnostic event, and by threading other such events throughout this book, I hope to “reveal ongoing contests and conflicts and competitions and the efforts to prevent, suppress, or repress these [confrontations],” shedding light on the dynamic social process that a large-­scale commitment to addressing HIV/

12  · Introduction

AIDS entails (Moore 1987, 730). I also seek to elucidate the multiplicity of local perspectives on the disease and the programs created around it, as well as Sierra Leoneans’ connections with social fields beyond the ethnographic site.

Sierra Leone as a Diagnostic Site Sierra Leone has long been central to the historical co-­construction of humanitarian movements and to enduring, racialized characterizations of Africa as a site of danger to the European body politic (Duffield 2001). In the nineteenth century, for example, the country was characterized as a “white man’s grave” (Rankin 1836). At the same time, during the late-­ eighteenth and early-­nineteenth centuries, the country also served as a repository and haven for the so-­called Black poor living in England, African-­ descended slaves who fought with the British during the American Revolution and, later, for Africans recaptured from slave ships by the British. In the late-­twentieth century, the disfigurements, rapes, and amputations that came to characterize Sierra Leone’s civil war established the country’s reputation as the home of the “coming anarchy,” which threatened to spill over into the “civilized” nations of the West (Kaplan 1994). Some demographers have ascribed high levels of HIV infection in other African regions to unbridled female promiscuity and sexual freedom and then pointed to West African sexual norms as signs of imminent outbreak (Caldwell et al. 1989). The low prevalence of HIV in Sierra Leone, therefore, is the source of cognitive dissonance for those who attempt to map multiple “African disorders”—­poverty, HIV/AIDS, brutal war, and conflict-­related sexual violence—­neatly onto each other. As one American who had spent years working on development in South Africa told me: “You wonder how people in Sierra Leone do all the wrong things, and there’s still no HIV problem.” What I have come to learn—­after spending twenty-­seven months over a four-­year period (2003–­2007) in various parts of Sierra Leone and having traveled extensively in many countries where HIV programs have taken root—­is that HIV/AIDS intervention models, like many bureaucratized efforts to attenuate social problems, (necessarily) rely on static, reductive, and miniaturizing rubrics and methods. These intervention models create an almost universal, traveling set of categories that allow

Introduction  ·  13

for comparison, contrast, and priority setting. But what these models do not adequately account for is the shifting, situation-­specific, and dynamic nature of risk—­risk as lived and experienced, as socially constituted and culturally constructed. In short, poverty may be a factor in structuring certain individuals’ risk for HIV/AIDS—­both through biological routes of mucosal vulnerability and economic routes that necessitate risky, paid sex—­but it does not necessarily determine uniform patterns of transmission. This is not to say that poverty, social inequities, and marginalization—­revealed through cultural and structural analyses—­are not at the core of suffering in Sierra Leone. Yet, I would argue that they are not (or at least not yet) the primary determinants in the HIV/AIDS epidemic. Unlike the country’s general population, which was once ranked fourth in the world in terms of income inequality, Sierra Leone’s HIV-­positive population is comprised of diverse economic classes. Among their ranks are highly educated and financially stable individuals. Also, West Africa has the lowest HIV prevalence of all the regions in Africa, suggesting the possibility of different patterns of transmission and/or different viral strains. Recently, wealth distribution and poverty have been shown to have unpredictable effects on HIV risk and transmission, calling into question the models that have long suggested a straightforward connection between the two (Gillespie et al. 2007a; Gillespie et al. 2007b; Mishra et al. 2007). Although poverty and uneven distribution of wealth do not appear to be driving HIV prevalence rates in the region, poverty, social inequalities, and marginalization do affect where HIV-­positive people seek care, the terms under which this care is provided, the quality of the care they receive, and the efficacy of the treatment they undergo (Gillespie et al. 2007a; Piot et al. 2007). This is especially clear with HIV care, support, and treatment programs in Sierra Leone, which perform the role of social welfare for many of Sierra Leone’s poor HIV-­positive people, but are consciously evaded by wealthier HIV-­positive individuals.

The AIDS Industry and the Politics of Care After Christiana died, I discussed her case with the HIV counselors at the hospital, all of whom had heard about the events leading to her death. The ones who knew me well admitted that her death was caused by negligence.

14  · Introduction

Sergeant Bangura, a laboratory technician who had worked on several international missions, used to be the main technician at the blood bank from which Christiana received the blood that eventually killed her. In his nearly two decades of working there, he told me, he had never had a patient experience—­let alone die from—­a transfusion reaction, because he was always very careful about how he tested the blood for cross-­reactions. (Besides, he added, the former head of the hospital would quickly fire anyone who might make such an egregious mistake.) The military hospital, established to serve not only the military but also members of the surrounding community, received separate donor funding from foreign military sources for its HIV/AIDS and infectious disease work. The U.S. government, for example, donated millions of dollars to HIV-­specific military programs in sub-­Saharan Africa (United States Department of Defense 2009). This investment is rooted in the logic that HIV infection within the military directly threatens both the United States and the aid recipient countries’ security (Feldbaum et al. 2006; Johnson 2002). When the U.S. Department of Defense transferred money to the Republic of Sierra Leone’s Armed Forces to implement HIV/AIDS prevention, testing, and treatment services among soldiers and their families, Bangura left the blood bank to take a more lucrative—­ and less time-­consuming—­job, performing rapid HIV tests and counseling soldiers and their civilian neighbors about their test results. Such seemingly insignificant changes in health facility operations can have powerful ripple effects. They also demonstrate how donor-­driven priorities in health care funding—­a nd the vertical programs that often accompany them—­can produce negative effects for people for whom these health issues are not a problem (England 2007a; England 2007b; England 2008; Mills 2005; Morris 2008). Taken together with the anecdote related by Sergeant Bangura, the story of Christiana’s mysterious illness and subsequent death illustrates how parallel health care structures like the HIV/AIDS program can “cannibalize” existing health systems, leaving a void in primary health care for people who are not HIV-­positive (Oomman et al. 2008).6 Under these new health care regimes, HIV/AIDS programs directly impact HIV-­negative persons through biotribalism—­t he carving up of spaces and distribution of resources to people according to the presence or absence of HIV antigen or antibodies in their blood (Nguyen 2010). Sadly, Christiana’s story is all too common throughout Sierra Leone. The fact that she was wealthier than the

Introduction  ·  15

many who die in hospice care, hospitals, or at home only makes the limits of care in this parallel system all the more puzzling and infuriatingly complex.

A Biopolitical Embrace: The State as a Caring Institution Christiana’s story took place against the backdrop of the presidential elections in late 2007, illustrating Sierra Leoneans’ preoccupation with how the state fits into their vision of a better life. Aside from her fear of election violence, she was very excited about the All People’s Congress (APC) party’s growing support within the country. Though previously disavowed for its connection with a severe economic downturn that closed schools, spurred inflation, and ultimately led to the civil conflict, the APC’s popularity had been restored during the 2007 presidential and parliamentary elections. When Christiana and I talked about the presidential runoff between the APC and the Sierra Leone People’s Party (SLPP), I told her that I felt that SLPP had been making positive changes in the country. She felt that the government had not progressed as much as people had hoped, and it was time for a new party with new ideas and strategies to take over. “It’s someone else’s turn now,” she told me. In fact, she laughed when I told her about all the progress that I had seen in Freetown since 2003. Smiling, she repeated my descriptions to her husband: “Adia says that in 2003, when she was living in Kenema, that she could not stand Freetown!” As a resident of the more easygoing, electricity-­and water-­rich Kenema, I felt that the water shortages, electricity problems, and the general malaise of Freetown made the city an undesirable destination, let alone a place I would want to call home. Yet, in June and July 2005, I had lived in the city and grew familiar with the nooks and corners of the commercial and recreational areas in the city center. There were still electricity and water shortages, but the city was pumping with vibrant activity that seemed to be restricted to certain sites in the immediate aftermath of the war. I had witnessed increased access to public transportation, a better variety of fresh, local goods, and a livelier atmosphere. Perhaps I had changed more than the city had, but Freetown definitely had a new sheen to it.7 Many people observed the postwar changes in the country I describe, but not everyone agreed that these changes were sufficient to alleviate hardship associated with broken infrastructure, limited social safety

16  · Introduction

nets, and constrained opportunities for economic, education, and professional advancement. In the run-­up to the 2007 presidential and parliamentary elections, it was nearly impossible to avoid overhearing a passionate conversation about politics. Despite being weakened by her illness, Christiana fervently tried to convince me of the need for change in the country’s leadership. While her financial situation was better than that of many of my acquaintances, her deep interest in the function and welfare of the state was part of a moral discourse taking place throughout the country. Christiana highlighted the role of the ordinary citizen in effecting change through participation in the elections. Christiana had correctly perceived Sierra Leoneans’ readiness for change. During the primary elections and the run-­offs, Sierra Leoneans made a moral assessment of Ahmad Tejan Kabbah’s presidency by not electing his vice president as his successor.8 They also demonstrated their hope for a radically changed and thoroughly reformed APC party. A relatively large majority of Sierra Leoneans voted for the APC candidate—­ now, President Ernest Bai Koroma—­who built his campaign on rhetoric of systematic, large-­scale change. His promises of electricity, clean water, education, and jobs for the nearly 75 percent unemployed were the key selling points for his campaign. As I will argue in chapter 5, Sierra Leoneans, to varying degrees, imagine and describe the state as a prominent site for care, even if this vision has not yet been realized. To say that a powerful politician or community leader does not care—­as I heard numerous times during my fieldwork—­is to emphasize a moral failure of the state. And in this definition of moral failure, not only have the state’s representatives failed to alleviate suffering, but they also appear to have failed to recognize people’s suffering in the first place. Many analysts have discussed the question of care in the context of the state, usually highlighting the implications of familism—­or metaphors of the family—­for describing the intimate attachments between citizens and the state (Herzfeld 2004; Jackson 2007). From these perspectives, people look to government, and the global institutions that support them, to exercise “caring power” and “care of the living,” associated with biopower and biopolitics (Foucault 1982, 782–­85; Prozorov 2007). In addition to rendering visible the connection between care and biopolitics in their accounts of good governance, Sierra Leonean political leaders and their constituencies often use familial terms when describing the state’s relationship and responsibilities to its citizens (Eaton 2006;

Introduction  ·  17

Schatzberg 2001, 35). Moreover, governments often rely on kinship metaphors to engender allegiance among their citizens. The use of these familial metaphors by citizens suggests a “moral matrix of legitimate governance,” where the legitimacy of states is dependent upon the extent to which they “share the fruits of their power” with their kin (Eaton 2006, 60–­61; Schatzberg 2001, 220).9 The use of these metaphors by states, however, does not usually require that they follow through on this moral pact with their citizens (Jackson 2007, 262). Yet, individuals—­ especially through their sexual behavior—­can be judged in terms of how they contribute to improving society. In other words, individuals, as citizens, are expected to “care for” the state.

Responsibility and Self-­Esteem With states’ receding responsibilities to provide care, individual responsibility and self-­esteem are increasingly central to how states and state-­like institutions expect individuals to create positive social change (Cruikshank 1993). Many of my interlocutors, especially those who held leadership positions within HIV support organizations, invoked “personal responsibility” to emphasize the diminished role of the state. They also did so to advocate for greater responsibility for communities and individuals to care for each other. Some, like the leader of one of the support associations I observed, felt that self-­reliance and self-­esteem were the cornerstones of rebuilding the country and ensuring political stability. Such perceptions resonate with public health experts’ beliefs that self-­ esteem and self-­efficacy can improve population health (DiClemente et al. 2009; Bartholomew et al. 2011). It is only partly true, however, to say that proponents of self-­esteem language believe that individuals are solely responsible for effecting change. In Freetown, the rhetoric of individualism, thrift, and self-­ improvement were accompanied by complaints and critiques of state and global institutions, which were perceived to have marginalized basic care. These sentiments were given strong expression in popular cultural forms like the dance music that blared from poda podas, street side stalls, and the numerous dance spots of Aberdeen, Lumley Beach, and Siaka Stevens Street. The Jungle Leaders, a popular dance and hip-­hop group, conveyed these sentiments in their song, “Di Sistem, Di Sistem” (The System, the System):

18  · Introduction

As soon as [the poor man] gets sick, it’s his funeral How can you live a life when you don’t have money? . . . Families just suffer with hunger and disease . . . The worst thing was when trash caused traffic jams According to this song, making a good life is nearly impossible in the economic crisis facing Sierra Leone’s poor. Hunger, disease, and even the trash piles on the street sides in Freetown serve as reminders that elected officials, the perceived custodians of the general welfare of Sierra Leone’s citizens, simply do not care about poor people. Nor, it seems, do they intend to be caregivers. As Arthur Kleinman has noted, caregiving is an ethical act in which recognition of suffering plays a crucial role (Kleinman 2007; Kleinman 2008). If those who control “the system” would include care within it, they would openly acknowledge and seek to remedy the “sorry” situations that the Jungle Leaders describe. The song reflects a common sentiment that “the system” is clearly not structured to facilitate such ethical acts. The government will not respond to its poorest citizens’ visible misery or the disappointment that results from their inability to make a better life. The singers—­and those for whom they sing—­lament that they cannot expect recognition from those whom they have elected as their leaders—­and to whom they direct their musical pleas.

Biological and Therapeutic Forms of Citizenship To talk about the kinds of subjects and identities these interventions produce—­and the modes of subjectification that they entail—­is to engage in recent conversations in medical anthropology about citizenship. Using the phrase “biological citizenship,” Adriana Petryna describes post-­ Chernobyl Ukraine and the claims that people with radiation-­related illness make upon the state (2002). Nguyen, having conducted his fieldwork in Francophone West Africa on HIV/AIDS, coined the phrase “therapeutic citizenship” to refer to a “form of stateless citizenship whereby claims are made on a global order on the basis of one’s biomedical condition” (Nguyen 2005, 142). Both concepts are centered on individuals’ relationship to the state—­ and in particular, the claims, rights, and entitlements conferred to citizens

Introduction  ·  19

by states or state-­like institutions. However, they are premised on two different readings of the role of state institutions in the management of life and death and the social formations that emerge from this process. Biological citizenship is based on an individual’s recognition of and by a state on the basis of physiological difficulties arising from an “abnormal” biological condition (radiation exposure, in the case studied by Petryna). Therapeutic citizenship highlights the emergence of global governance structures that provide social services that the state has failed to provide, despite a mandate to do so.10 Multilateral institutions like the Global Fund for AIDS, Tuberculosis, and Malaria and bilateral initiatives funded by Western governments act as “quasi-­states”—­or state-­like entities—­t hat produce control, regulation, and legitimacy (Trouillot 2001). While these state-­like entities lay bare the failure of African governments to care and the (seemingly) neocolonial imperatives of donor institutions, they obscure a normative statement about states. While citizens might express disdain for the government in power, this same disdain also reveals a set of expectations for the government’s role in individuals’ lives. Namely, citizens expect their government to play a significant role in improving their quality of life through the provision of employment, safe water, viable roadways, affordable food, and quality medical care. Moreover, the government’s duty is couched in familial terms, which suggests a specific mandate for the state to both nurture and discipline its people. More subtly articulated is the role of citizens to be available for nurture and discipline and to engage in acts of caregiving. Although most accounts focus on Sierra Leone’s war as evidence of state failure, I understand the war to be an affirmation of the state’s perceived legitimacy, since the state remained a significant symbolic and physical site for power struggles during the conflict. The contest for state control was essentially a battle to “control aid flows, to punish, appoint, and grant impunity. Sobels [soldiers who sided with rebels and committed the acts of atrocity most noted in media accounts] and rebels, though often content with exploitation, have repeatedly sought to secure the benefit of state power” (Keen 2005, 297). State power, no matter how marginalized in systems of global governance, still represented a form of power worth fighting for. Such realities cast political and national interests as moral ones, in which the state is not just “good” or “bad,” but rather represents what matters most to—­and what is at stake for—­a group of people in a particular local world (Kleinman 2006). Rather than simply eroding

20  · Introduction

the power or legitimacy of the state in global health governance, the proliferation of AIDS organizations and programs as a form of caregiving supplements and buttresses state power as “caring power,” as it also points to a failure of the state to provide services.

Morality, National Progress, Gender, and Illness As a diagnostic event, Christiana’s story shows how an interpretive approach to studying links between culture and the response to HIV in Sierra Leone must account for the interplay among the political-­economic, symbolic, and intersubjective registers of social life. At the end of her recounting of Christiana’s search for health care, Auntie Agnes made sure to tell us that her daughter did not have AIDS. Slipped in between “hepatitis B” and “bad blood” in her retelling of the events leading to Christiana’s death, this “not AIDS” hangs there, an act of negation, an invitation to the audience to reflect upon the deceased woman’s sexual character. The moral logics of HIV programming rely upon gendered notions of responsibility, vulnerability, caring, and nurture. Masculine and feminine character traits are sutured to appropriate behaviors for disclosure, involvement in HIV activism, and the shifting dynamics of transmission. Such gendered moral logics are entangled with national political imaginings and desires for economic and social progress. As I will discuss in chapter 5, sexual character has long been at the root of discussion around women’s role in the development of the country, and sexual behavior has been used as an indicator of moral values and social change (Little 1973; Moran 1990; Moran 2000). Talk about women’s sexuality often reflects upon certain sexual behaviors as both causing and resulting from underdevelopment.11 Men are vilified either as “willful infectors” or as unequivocally abusive upon learning of a female partner’s diagnosis—­if they are subjected to scrutiny at all. In Christiana’s case, the madam’s mention of the absence of HIV in her blood reveals the weight of the disease in places where it has not (yet?) ravaged the population. To pronounce Christiana’s condition as not HIV, therefore, was also to insist that she was a monogamous, faithful wife and a careful mother. Defying a highly sexualized, gendered, nationalist trope, Christiana had not been tempted to “stray” from a committed monogamous relationship by the allure of money, prestige, or power in the dire economic and social milieu of post-­conflict Sierra Leone. A recurring

Introduction  ·  21

theme during my fieldwork, such gendered, nationalist readings of HIV resonate with many local moralized readings of sickness: as rendering individual bodies vulnerable to attacks from spiritual and human enemies; as a means for mediating ideas about self and identity; and as indicative of moral decay and misdeeds by individuals or communities (Ferme 2001; Henry 2006; Opala and Boillot 1996; Shaw 2002).

Chapter Overviews The book is organized into three parts that mirror biopolitical arrangements and processes. In Part One, I examine how knowledge produced and circulated about HIV and AIDS comes to be held true and commonsense in Sierra Leone. In Part Two, I describe how such truths form the basis for intervention on specific populations, and I identify the kinds of subjects, affects, and moral dilemmas that arise in the context of such interventions. In Part Three, I outline how HIV as a “global health issue” is constituted as both an object of national significance, reflecting a state’s ability to govern well, and of individual nationalist sentiment, reflecting one’s commitment to caring for the state. In the first part, which includes chapters 1 and 2, I trace the emergence of contested truths about Sierra Leone’s HIV epidemic. I provide the context for HIV as an object of social and cultural analysis in post-­conflict Freetown, Sierra Leone, and I explain the role of these analyses in creating “truths” about the disease. Chapter 1 orients the reader to the topography of HIV aid in Freetown and the ethnographic tools employed for mapping the various terrains, landmarks, and routes central to navigating HIV programming in the city. In chapter 2, I describe the debates over HIV prevalence figures, epistemic struggles over truth claims related to Sierra Leone’s epidemic, and HIV’s exceptional status. I also describe which forms of “accounting”—­enumerative, confessional, and other means for coming to terms with the epidemic—­can be legitimately used by people involved with the management of HIV prevention, care, and support programming. I share the competing truths that are simultaneously deployed by HIV-­positive people, many of whom suggest that HIV exceptionalism constitutes not simply a programmatic reality, but also a uniquely experienced truth. The book’s second part—­comprising chapters 3 and 4—­focuses on the effects of HIV programs and policies on the lives of the people most

22  · Introduction

intimately involved in the programs. Particularly, I explore the institutional demands for people diagnosed with HIV to “live positively,” opening my discussion with a scenario in which the president of a local HIV NGO urges her HIV-­positive audience members to “live positively” and “raise their self-­esteem.” Events described in these chapters largely take place in HIV support associations, positive living workshops, and testing centers in Freetown, Sierra Leone, addressing some of the “surfacing practices” that recruit individuals into the political economies of HIV-­ positivity and suffering. In suggesting a relationship between political economy and surfacing practices, I draw attention to how certain kinds of tales and images that give materiality to the virus are drawn into “social and material circulation, acquiring new value and valences and entering into circuits of commodification” (Taylor 2005, 748). In this sense, “surfacing” not only describes the practices that facilitate HIV’s emergence from “hiding” under the skin (e.g., testing, disclosure, visible sickness). In fact, “surfacing” also includes practices that smooth over contradictions and mask imperfections of the programs created in r­ esponse to HIV infection. In chapter 3, I describe how the “imperative to talk” formed the core of peace-­building and healing efforts in the postwar period, during which men, women, and children were encouraged to come forward, talk, and testify about brutal war-­time experiences and participate in public, ritual acts of forgiveness. In the context of HIV/AIDS interventions, the imperative to talk primarily registers as an imperative to disclose one’s HIV status to a wide range of audiences—­friends, sexual partners, families, and strangers—­in exchange for social support, NGO assistance, and peace of mind. In addition to being understood in terms of postwar programmatic agendas, the imperative to talk must also be understood within a broader sociological context in which individuals operate as “if on a theatrical stage, carefully presenting and framing information about themselves” (Goffman 1959; Klitzman and Bayer 2003). Such questions of everyday self-­ presentation, moreover, dovetail with local cultural notions of concealment and their links to power, prestige, and moral personhood. Surfacing positivity is not simply a narrative practice mediated by power, privilege, and want; it is also an ocular one. Visibility, moreover, operates within fields of articulability. Chapter 4 focuses on the spectral and elusive character of “positive living” and its relationship to visibility—­ an equation in which “looking good” means “looking well” and implies

Introduction  ·  23

complicity with and acceptance of “positive living” ideals. As I briefly addressed in chapter 2, many of my interlocutors—­t he majority of whom saw HIV programs as economic and professional resources—­grappled with how visibly to demonstrate their vulnerability to anyone presumed to have connections to resource-­rich donor institutions or NGOs. Thus, balancing the requirements to demonstrate both “positive living” and “vulnerability” was a topic of sustained ethical deliberation. Others—­usually those HIV-­positive people who are relatively well-­off and educated—­ insisted upon avoiding the gaze of HIV programs, suggesting that the demands for spectatorship and recognition are uneven in their significance, scope, and reach. In the third part of the book, I examine how claims of suffering are situated within a broader critique of the state and at the nexus of its paradoxes. On one hand, Sierra Leoneans lament the inadequacy of the state to provide care for its citizens. On the other, they uphold its indispensability as the embodiment of sovereignty and social order and see the state as an entity capable of providing care through its policies (for a discussion of this paradox and its analytical uses, see Hansen and Stepputat 2001, 2). The failure of the state to “care” is powerfully articulated both within and outside the circles of HIV support groups. Wealthier HIV-­ positive individuals tend to avoid the state’s biopolitical embrace, hoping both that their identities are not fixed to HIV and that they can effectively manage their illness without government intervention. The discourses that link Sierra Leone’s development, governance, and HIV are also ordered by moral, gendered, and sexualized logics. Specifically, the moral failures of the state to provide care and persist through threats to its stability are often articulated in terms of how these failures affect gender norms and heterosexual relationships. In turn, ideas related to regulating women’s sexual conduct to prevent HIV are intimately connected with ideas of nation rebuilding in the post-­conflict era. Women are urged to commit to safe sex for the benefit of their country, and women’s sex lives are seen as diagnostic of the civility of social and political discourse. The international AIDS and development communities judge state forms of caregiving in terms of the numbers (of seroprevalence, incidence, mortality, and drug stores), and such numbers are held up as evidence of good governance. The abundance of resources for HIV in sites of scarcity and inequality raises new questions for the anthropology of development and global

24  · Introduction

health interventions. The density of meaning and social action that coalesces around HIV/AIDS has resulted in new challenges to governance. Christiana’s death in a time of ever-­expanding access to HIV care in a weakened and rebuilding health system reminds us that the debates about the relevance of HIV/AIDS in Africa must involve serious deliberations of AIDS exceptionalism in this fourth decade of the epidemic.

I

The Exceptional Life of HIV in Sierra Leone

This page intentionally left blank

1

The HIV Industry in Postwar Sierra Leone

In late June 2005, I attended a two-­day strategic planning meeting to discuss Sierra Leone’s response to HIV/AIDS. Representatives from community-­ based and international nongovernmental organizations, private industry, and government agencies were all in attendance. This meeting was a crucial step in securing funding from the Global Fund for AIDS, Tuberculosis, and Malaria, the largest financier of state-­run programs to combat these three diseases. The Global Fund disburses 20 percent of global HIV funding. By April 2012, the Global Fund had allocated or disbursed more than $60 million in HIV-­related aid to Sierra Leone (www. theglobalfund.org). A Nigerian consultant guided us through the reams of documents that we would evaluate over the course of our two-­day workshop: explaining results and logical frameworks (“log frames,” in NGO parlance); outlining programs’ overarching objectives; identifying intended program beneficiaries; defining program strategies and expected outcomes; and setting numerical targets and benchmarks.1 The alphabetical garden of acronyms on the strategic plan revealed the wide array of actors involved in developing a comprehensive HIV/AIDS response. These diverse organizations create the methodological horizontality that is criticized by many opponents of HIV/AIDS exceptionalism in programming. Because this meeting took place in the early stages of my field ­research—­a two-­month stint, which would be followed by seventeen months the subsequent year—­I did not question the generic nature of the plan. Only later did I recognize that, despite the unique situation posed by Sierra Leone’s then-­recent emergence from civil war (and the insistence by numerous meeting participants that war had shaped the country’s HIV/AIDS epidemic in unique ways), the plan’s only reference to the war was the mention of refugees. For example, one of my informants, James, implied that war uniquely shaped his experience of being HIV-­positive. 27

28  · The HIV Industry in Postwar Sierra Leone

He was arrested for his involvement in rebel recruitment during the war and suspects that he was either infected while in prison or during his long and ongoing intimate partnership with a “bush widow,” a woman captured by the rebels and who lived for several years with a rebel commander. The planning documents for the post-­conflict moment, however, outlined specific priority areas for HIV prevention, care, support, and treatment that could have been developed anywhere else in the world for almost any setting. I point out the significance of the war for HIV-­positive experiences and the generic nature of the strategic plan not to suggest the incongruity of the “local” and the “global,” but rather to highlight how public health universals travel and settle, sometimes uneasily, and often in ways that escape note—­even in settings like Sierra Leone, where a universal approach has a legitimate reason to be challenged. Universals are the substrate for HIV initiatives, allowing for shared language, approaches, and tools in the quest for progress toward subnational, national, and global health goals. In essence, meetings like these—­with West African expatriate consultants, U.S.-­developed technocratic log frames, global funding schemes, and myriad national and international institutions—­are a starting point for developing a topography of HIV programming in Sierra Leone. By using “topography” to describe the outcome of this process, I want not only to sketch an abstract map of HIV programming, but also to outline the “movements of . . . social agents, and the paths they carve out, physically and socially, through their way-­finding” (Hastrup 2005, 145). To do this, I will begin with my first encounter with humanitarian and development work in Sierra Leone. I will then briefly trace the topography of HIV/AIDS programming in Freetown by describing the ethnographic tools I used to map the overlapping networks, landmarks, and routes central to navigating this complicated terrain.

The Lay of the Land I first visited Sierra Leone in September 2003, more than a year after the ceasefire, to conduct research among Liberian refugees living in Kenema and Bo Districts, located in the southeastern part of the country. At the time, Freetown and towns in other regional centers, like Bo and Kenema, were flooded with humanitarian organizations. These organizations were tasked with meeting the basic needs of Sierra Leoneans attempting to

The HIV Industry in Postwar Sierra Leone  ·  29

rebuild their lives in the aftermath of war, as well as Liberian refugees, who had fled to neighboring Sierra Leone to escape their own war. Many of the programs at the time focused on a range of efforts to demobilize, rehabilitate, and reintegrate ex-­combatants and to facilitate “transitions” from conflict to peace, from impunity to justice, and from impoverishment to development. During my seven months of research in the field of gender-­based violence, I also witnessed personal and institutional transitions.2 Some of my close colleagues arrived from and then moved on to emergency operations in the Democratic Republic of the Congo, Indonesia, Darfur, or Afghanistan. Others left because they were promoted or took up employment in other development-­oriented organizations. International donor mandates shifted from emergency relief to development, with some organizations jockeying to shift their portfolios to address the liminal, newly emerging field of “postconflict development.”3 Such programs were neither oriented strictly to emergency relief nor to full-­on development, but rather, they straddled the two, resting on assumptions that people and local social institutions were situated somewhere “in between,” where concerns about creating a durable peace and securing sustainable livelihoods were both central and interconnected. In keeping with an agenda that equated the post-­conflict period with liminality, many international programs developed in the post-­conflict period sought to address both the perceived root causes of the war and the devastation left in the conflict’s wake. HIV/AIDS prevention, care, and support activities were integrated into some of these programs, because war was perceived to increase the risk of HIV transmission. This rise in transmission presumably occurred several ways: by amplifying inequitable gender norms and dynamics (Taylor 2003); by changing the means of pursuit and maintenance of intimate heterosexual relationships (Henry 2005; Utas 2005); and through the wartime sexual violence and exploitation experienced by women at the hands of rebel, military, and peacekeeping forces (Elbe 2002; Fofana 1999). Shortly before my initial two-­month exploratory research in 2005, UNAIDS established an office in Freetown (Figure 1) to “pave the way for HIV to be mainstreamed into development instruments and forums” and to “strengthen the response to AIDS in the country,” thereby making HIV/AIDS a high-­priority issue (UNAIDS 2007). The UN organization worked closely with the National AIDS Secretariat, which served as a

30  · The HIV Industry in Postwar Sierra Leone

Figure 1. Map of Freetown. By Lynn Carlson.

coordinating body for the government and NGO responses to HIV/AIDS in the country. According to my contacts at UNAIDS, this collaboration was largely responsible for the Global Fund’s decision to finance the National AIDS Secretariat’s HIV initiatives, which in turn, financed collaborations with approximately thirty local and international nongovernmental organizations based in Freetown.

Way-­Finding: Dead Ends, Detours, and Alternate Routes Automobility When I returned to Sierra Leone in June 2006, I began searching for an inexpensive but robust vehicle that could travel “upcountry” and handle the pothole-­fi lled roads, the torrential downpours of the rainy season, and the resulting mud pits. I knew that having a car would provide increased social, cultural, and physical access to places both in and beyond Freetown. Although used cars seemed to flood the market—­and the streets—­in reality, few people owned or operated private vehicles.4 The

The HIV Industry in Postwar Sierra Leone  ·  31

cost of securing, operating, and maintaining a vehicle was simply out of reach for the majority of Sierra Leoneans. An automobile, therefore, conferred a special status to its owner. The make and model of the car you drove indicated your social status. Toyota Land Cruisers, for example, were associated with the UN and international NGOs, while smaller, less robust Japanese SUVs—­like the Toyota Prado, Isuzu Trooper, and Nissan Pathfinder—­were associated with businessmen, employees of international organizations, or members of other well-­paid occupations. Small sedans, like the Nissan Sunny, formed the bulk of shared taxis in town. I purchased a mid-­’90s, two-­door Mitsubishi Pajero with four-­wheel drive from an aging Fula-­Mandingo diamond dealer.5 Maintaining this inexpensive used vehicle came with its own set of challenges and learning opportunities. I spent countless hours with my close friend and engine mechanic, Mohammed, searching for elusive spare parts or refashioning makeshift ones and looking under the hood. Such endeavors proved crucial for my acclimatization to the syncopated rhythms of life in Freetown. When my vehicle was not being inspected, repaired, or otherwise out-­of-­ commission, I offered rides to neighbors and colleagues, especially if they needed to travel long distances. In addition to saving them poda poda (a public minibus with a designated route and fixed cost) or taxi fare and getting them to their destinations safely and quickly, chauffeuring program staff and clients allowed me to become better acquainted with them. As we drove together, we learned about each other’s lives, our work, and our opinions about life in Freetown.

Unexpected Turns There were many missteps and unexpected turns in fieldwork. At the beginning of my fieldwork, I initially sent letters to the thirty organizations listed in the Global Fund documents, in an attempt to set up interviews with the individuals responsible for HIV programming. The interviews, I had hoped, would provide me with a sense of how organizations “thought” about HIV/AIDS programming within their work (Douglas 1986). At first, responses were few and far between; only four accepted in the first few months. A dozen others, mostly those from the smaller organizations, I would later meet with informally during workshops, press conferences, and HIV-­oriented events. Some of their insights are shared in this book in aggregate.

32  · The HIV Industry in Postwar Sierra Leone

I also planned to conduct twelve to fifteen focus group discussions with people targeted in the national HIV/AIDS strategies, particularly young men and women. Focus groups can be a useful complement to participant observation, because they provide information about social and cultural norms and attitudes about sexuality (often these include public fictions surrounding sex). My research assistant, a college student, convened four groups with youth from a variety of neighborhoods, for which I cofacilitated and took notes. These group discussions were designed to focus on sexuality and sexual health questions, emphasizing dating practices, perspectives on sexual relationships (e.g., sexual debut, ways of demonstrating attraction), and knowledge about sexually transmitted infections. I hosted two groups for female participants and two groups for males. Each focus group had at least six participants, mostly between the ages of eighteen and thirty. Although I was not able to conduct the twelve to fifteen focus group discussions I had originally planned, the discussions I did host provided me with useful information, although it was not the information that I had originally anticipated. Rather than focusing on conventional matters related to condom negotiation and knowledge about sexually transmitted infections, these conversations ran the gamut from conspiracy theories around AIDS (Does it really exist? Is it the white man’s invention to keep the black man from having sex and children?) to ideas about same-­sex attraction among women and prostitution. There was also much discussion about the role of the war in shaping post-­conflict sexual norms and values, which, while not generalizable, supported many insights gleaned from intensive participant observation and guided some of the questions I posed throughout fieldwork.

Deep Hanging Out Interviews and focus group discussions—­for all their authority in short-­ term public health research projects—­are not sufficient to understand the complex dynamics occurring within particular institutions and in everyday life. So when I arrived in Freetown in June 2006, I sought (informal) membership in social clubs and regularly participated in social events like beauty pageants, sporting matches, and concerts. I also joined a running club, in which I befriended several people outside the circles of development and HIV/AIDS care. The conversations I had with friends revealed

The HIV Industry in Postwar Sierra Leone  ·  33

the extent to which HIV/AIDS had caught on as a metaphor for understanding human suffering and social change. Deeper discussions led me to understand HIV/AIDS as a prism through which idioms of responsibility, vulnerability, rehabilitation, and reconciliation were framed. During the early stages of my fieldwork, I devoted my evenings to social gatherings at nightclubs and bars near the beach and in central Freetown, chatting with people, like my friend, Christiana, over drinks and learning about their concerns about family, friends, and work.6 Even when these conversations were focused on very intimate social relations and personal experiences, people’s worries as well as jokes were often couched in a litany of lacks—­goods and services that ought to be available to the average Sierra Leonean—­such as water, electricity, adequate and affordable housing, and jobs. These lacking resources were often attributed to corruption or incompetence at various levels of government. Equally often in our discussions, however, Sierra Leoneans expressed seemingly contradictory combinations of resignation and hope. They went about the business of living their lives, trying to eke out a comfortable living. For as many people who struggled to make ends meet or to maintain positive relationships with their lovers, friends, and neighbors, however, just as many continued to hope that substantive changes were on the horizon—­ changes that would relieve them of their seemingly insurmountable daily hardships.

Guideposts and Road Signs Hearsay When we were out and about, my research assistant and I paid careful attention to gossip, rumors, and conversations about intimate relationships, and we cataloged what we overheard in “hearsay notebooks.” Our activity was, perhaps, something akin to hearsay ethnography. According to Watkins and Swidler, hearsay ethnography “captures spontaneous conversation rather than responses to researchers’ questions or probes . . . varied personal and collective agendas that lead people to confront” specific problems that they face, and “the ongoing shared enterprise of constituting and revising cultural understandings” (Watkins and Swidler 2005, 1). When placed in proper context, these conversations reveal how culturally shared understandings are constantly negotiated and subject

34  · The HIV Industry in Postwar Sierra Leone

to revision. Using this method as part of a larger ethnographic toolkit, I learned how people talk about the issues that matter the most to them. I learned a lot from the rumors and gossip that circulated in a variety of sites. In the nightclubs of Aberdeen (a neighborhood on the West End of Freetown), I heard about the scandals brewing among friends and acquaintances, including a disgruntled wife who beat up her husband’s mistress in one of the food markets and a businessman who kicked his wife out of the house because he found her love juju (magic) under the bed. Mundane activities such as going to the hairdresser or sipping drinks with girlfriends illuminated many salacious aspects of everyday life. I heard stories of expatriate men who slept with young, local beach bums; of well-­connected female entrepreneurs entangled in transnational cocaine smuggling networks from Guinea to the Netherlands; of suspected human sacrifice for political gain during the presidential elections; and of clever Nigerian businessmen who sabotaged others’ success by destroying their competitors’ products, among many others. It is also through these networks that I heard stories about people who were HIV-­positive but did not access the institutional support systems I describe in the book. On the days I did not drive, I took poda podas or shared taxis to my destination. If the music was not blaring, it was difficult not to eavesdrop on conversations in these cramped passenger vehicles. When the music made it impossible to hear, I learned the most popular songs among the young men in their teens and twenties who worked as drivers and apprentices, the workers who collect fares and call out destinations to potential passengers on the street. The musical canon included the most recent songs from Sierra Leonean artists Emmerson Bockarie, Daddy Saj, K-­Man, and Vida; deceased American rapper Tupac Shakur; Senegalese-­ American singer Akon; Colombian singer-­ songwriter Shakira; and Haitian-­American artist Wyclef Jean.

Radio and Newspapers Listening to the radio is a popular activity in Sierra Leone, and when invited, listeners often called in to local, national, and international radio stations to share their opinions (Khan 1998). As part of my morning ritual, before heading off to one of my field sites, I listened to BBC Africa and Radio France International (RFI). In the car and during the evenings, especially during the elections or when socializing with friends, I listened

The HIV Industry in Postwar Sierra Leone  ·  35

to local radio in Krio and English, keeping my ear especially tuned to the presidential election coverage and other important issues. Three or four times per week, I would hear radio spots for HIV/AIDS prevention and testing, many of which informed people about the treatment available to those who test positive for HIV. Newspapers were also an important method for learning about current events taking place in Freetown and throughout Sierra Leone. A daily perusal of newspaper clippings gave me a sense of what piqued people’s interests and which issues concerned them most. The daily papers were fairly inexpensive and circulated through town by paper hawkers, delivery people who would visit individual houses or travel between businesses that paid for a subscription. Even though literacy rates were reportedly low among Sierra Leoneans, it was not uncommon to see individuals frequenting places where they could read the newspaper for free, including government and nongovernmental offices, businesses, and the city library. Our household purchased several newspaper subscriptions, and I read those papers and magazines upon their arrival, along with those archived in the offices where I worked. A weekly serial about love and sex was a particular favorite of mine, and I also collected clippings or transcribed articles that discussed sexuality, HIV/AIDS, or development and politics. While these methods gave me a sense of how HIV prevention strategies were communicated through everyday conversations and in the media, other research sites afforded me opportunities to see how HIV-­related services are delivered on a day-­to-­day basis. In the next sections, I describe testing centers, the reasons that people come to be tested, the support associations to which “clients” are referred upon receiving an HIV diagnosis, and the related goods and services made available through these associations.

Therapeutic Itineraries HIV Testing During my fieldwork in Freetown, there were six official testing centers located in community-­based organizations, public health institutions, and private laboratories. People can also be tested for HIV through private medical practitioners and pharmacists. I conducted my participant

36  · The HIV Industry in Postwar Sierra Leone

observation in two public, government-­supported clinics: Connaught Hospital’s AIDS Response Group and the 34 Military Hospital. At both these organizations, I both observed daily work and participated in it, helping to sort pills into bags or arranging client booklets in the office. In a place where HIV prevalence is low, as in Sierra Leone, the demand for voluntary counseling and testing services is also low. In 2006, nearly 5,000 people were tested for HIV public health facilities in Freetown, a city of one million people.7 This number of people seeking testing did grow over time, however. According to the nurses, counselors, and government statisticians I interviewed, more Freetown residents had become interested in knowing their HIV status. Staff suggested that increased marketing of testing services on popular radio stations and in newspapers—­and a readily available supply of antiretrovirals (ARVs)—­ contributed to this increased demand for testing services.8 The reasons cited by both HIV-­positive and HIV-­negative individuals for being tested, however, are varied. Many men and women sought the test—­or their doctors advised them to take it—­after a not-­so-­mysterious illness like malaria, typhoid, or tuberculosis manifested in mysterious ways. For the immuno-­compromised, this could mean that there were persistent and recurrent bouts of diarrhea or increasingly high numbers of plasmodium in a malaria blood smear even after the use of normally effective therapies. During a conversation in the AIDS Response Group office in Connaught Hospital, James explained his story to me: I was really feeling sick . . . for close to a year. Close to a year before I started doing my tests. I started getting persistent fever. High temperature. Sweating at night. You know. I usually do malaria and typhoid tests, and most of the times, malaria, the test normally showed positive. At one point, I think I had up to 1,040 malaria parasites per milliliter. The last time before I did my HIV test, I did the malaria parasite test and the typhoid test. The typhoid test was 6,000 to 100. Yeah. My urine was completely yellow . . . like that flower. [He pointed to a plastic flower on a counselor’s desk.] I seldom go to toilet. I seldom go to toilet. I sweat excessively at night until I did the test. For over a year, I was in that state. I would take malaria and typhoid treatment for about two weeks. I would suppress it for about two weeks. But after that two weeks, it would come up again.

The HIV Industry in Postwar Sierra Leone  ·  37

Judson, a former politician and businessman in a central Freetown neighborhood, told a similar story. He and his wife had fallen ill in 2004. Quietly crying during our interview, he told me that doctors had started to suspect that his wife was HIV-­positive when she was being treated for tuberculosis. After treatment, she would get better for some time, only to become ill again. Finally, after seeing that her symptoms were failing to subside, her doctor recommended an HIV test. Her test was positive. Judson, after spending a few months denying that he could also be HIV-­ positive, decided to take an HIV test, too. He told me that he refused to accept the results at first, but after some months, he realized that his denial would do nothing for his illness. Just as he began to feel better, Judson learned that his wife’s treatment was failing. The ARVs her doctors prescribed for her were not effective, and she passed away within a year of learning her diagnosis. Others, particularly the HIV-­negative individuals I interviewed, decided to get tested for HIV because they wanted to travel abroad. Until January 2010, the United States, a popular travel and resettlement destination for Sierra Leoneans, required a negative HIV test to obtain a visa.9 At the time of my fieldwork, numerous other countries—­including Canada and many countries in both the Middle East and Eastern Europe—­ denied entry to anyone who tested positive for HIV during a pretravel medical examination. Still others sought an HIV test because they were curious about whether they might have contracted the virus through sexual contact or risky medical procedures, like blood transfusions. I talked to a woman at the office of the AIDS Response Group (ARG) who told me that she believed that she had been infected during a blood transfusion ten years before our interview. She had been traveling in the north of the country when she fell ill. Her doctor told her that she had “lost blood” (meaning she was anemic). She was transfused with blood that she purchased from a local blood bank. During the transfusion, she told me, she felt chills and saw a rash developing on her arm (possibly a transfusion reaction). She believed that the chill that she had felt during the transfusion was HIV entering her bloodstream. Still other people opted to take the test out of curiosity. This curiosity was piqued by radio ads, billboards, and other forms of literature urging people to get tested and learn their status. Siaka, a program manager for an HIV/AIDS support association, explained that he decided to be tested

38  · The HIV Industry in Postwar Sierra Leone

after reading an article about HIV/AIDS in Awake Magazine, a publication of the Jehovah’s Witnesses. The article motivated him to seek testing, and later, he learned that he, too, was HIV-­positive.

Support Groups There are several formal support groups in Freetown; many of them are neighborhood associations, while others are wider in their geographical reach. After a person tests positive for HIV at a clinic or community-­ based organization in Freetown, a social worker or counselor trained by the National AIDS Secretariat (NAS) usually suggests that she attend one of these support groups. Over the course of ten months, I participated in the support association meetings for three groups: Families United, a group serving military families and civilian families living near the barracks and military hospital; Community Health Program (CHP); and the AIDS Support Association (ASA). I chose these three associations because they served geographically diffuse and diverse clientele and are located in three distinct areas of Freetown—the West End, the East End, and central Freetown. Together, they serve hundreds of people living with HIV/AIDS in the greater Freetown area. During my time with these groups, I was able to develop detailed narrative accounts of the interactions between program staff and support group attendees, coworkers, and even donors. I became close friends with a few association leaders, and I tried to help them by using the skills I had learned while working as a public health professional for the past decade. I provided assistance by seeking additional support from the NAS, sorting pills and medications for distribution, and creating informational pamphlets. In addition, I interviewed more than two dozen “clients” formally—­and just as many informally—­ throughout the course of support group meetings.

The Functions and Funding of Support Groups Support associations in Freetown are intended to provide a “safe space” for people to share their experiences about being HIV-­positive. They also purport to help support association leaders build community and solidarity around group members’ HIV status. Leaders expect participants to share the various problems—­health-­related, familial, financial, and

The HIV Industry in Postwar Sierra Leone  ·  39

professional, among others—­that arise from their HIV-­positive status. Like similar groups in other parts of the world, these support groups are intended to educate people about their condition, so they can use this knowledge to improve their lives and protect others from infection. A  counselor who refers her clients to these associations usually highlights the benefits conferred by attending a group in both emotional and economic terms: “It can be a place where you can talk about your problems” or “maybe they can help you with baby formula or nutritional support.” Presumably, these are important resources for their clients. Indeed, when I discussed their motivations for belonging to the groups, participants often cited social support from their peers and the tangible perks that accompanied their membership. It should be no surprise, then, that an individual’s decision to attend support association meetings does not depend primarily on a feeling of solidarity (although this plays a part) or a desire to learn more about HIV. Instead, the most important reason driving an individual’s decision to join a support group is often her economic circumstances. This is because regular meals, transportation allowances, food rations, and information linking members to wider resource networks are often distributed through these associations. Multilateral donors like the Global Fund and bilateral donors like the U.S. government and the European Union countries collaborate to allow the government of Sierra Leone and NGOs to provide this level of support to people living with HIV/AIDS. Although their methods and objectives were similar, the sources of financial and technical support for these organizations varied. Families United received start-­up funds from a former UNAIDS staff member and collected monthly membership dues. In addition, its members received food rations from the U.S. Department of Defense and other resources from the U.S. government and—­to a lesser extent—­t he United Kingdom. The Community Health Program received technical and financial support from both a Christian denominational church and an international Christian NGO based in the United Kingdom. The AIDS Support Association received most of its financial and technical support through the National AIDS Secretariat, the national agency that coordinates HIV-­related activities in Sierra Leone. In addition to support provided by the Global Fund, international NGOs, and Western donor governments, there were other collaborative efforts to provide assistance to HIV-­positive people. The World Food

40  · The HIV Industry in Postwar Sierra Leone

Program (WFP), a UN agency funded by numerous wealthy countries, is one example of the many-­sided collaborations that occur in developing countries like Sierra Leone. The WFP provides “nutritional support” to people seeking HIV and AIDS care at nationally recognized clinics. As a general practice, the WFP provides surplus agricultural products from richer donor countries to poorer ones, and it counts the United States among its biggest donors. The types of food the organization distributes include vegetable oil, split peas, and bulgur wheat—­a very controversial grain among its recipients, because of its limited resale value and a strong preference for rice among Sierra Leoneans.10 Best known for its provision of foodstuffs during complex humanitarian emergencies, the WFP usually works with nongovernmental organizations to distribute food that has been donated. This distribution can be done through a variety of contractual agreements. The WFP does not knowingly provide food to uniformed military personnel, because the organization is supposed to be “operationally neutral.” One can assume, however, that the WFP cannot always know for certain if it is supplying military personnel with food. The U.S. government, however, does not have such a neutrality policy. It considers HIV/AIDS within the military to be a national security threat (for both Sierra Leone and the United States); thus, the U.S. Department of Defense, through the U.S. Embassy, provides additional foodstuffs and “supply” (the local term for food rations) for military personnel. As one might expect—­and as I describe in more detail in later chapters—­t he kinds of items included in the monthly supply, their estimated market and social value, as well as the specific amounts distributed to individuals, are the subject of tense debates and creative maneuvering among people living with HIV/AIDS.

Support Group Meetings The typical support group meeting is facilitated by a model-­leader who is HIV-­positive. In some of the groups, volunteers and paid social workers model appropriate behavior using skits and role-­plays. These minidramas focus on specific types of problems that HIV-­positive men and women face in their everyday lives. The staff members who write the skits focus on common ethical issues that arise among HIV-­positive people, especially in this age of increased access to antiretrovirals and medicines for opportunistic infections. The skits garner lively debate and discussion

The HIV Industry in Postwar Sierra Leone  ·  41

among the members. During and after these skits, audience members and performers alike discuss issues related to disclosure: how, and under what circumstances, do you disclose to your friends, family, and lovers? In the skits, the actors try to model favorable conditions for disclosure. They also promote facilitated discussion related to condom use and medication compliance—­critical issues for any HIV prevention, care, and support program. As I became a fixture in these associations, I was invited to observe informal meetings and discussions in government offices, take part in workshops as a trainee, and march in rallies for HIV-­related issues. Observing these events helped me to understand that these public performances often mirrored smaller, more intimate encounters occurring within the support groups and during home and site visits.

2

Exceptional Life, Exceptional Suffering Enumerating HIV’s Truths

In October 2007, a press conference held in Freetown launched a week dedicated to ending stigma and discrimination against people living with HIV and AIDS. Although few cases of discrimination against people living with HIV/AIDS had been reported in Sierra Leone, the event was nevertheless presented with great fanfare at a venue near the National Stadium.1 High-­ranking officials from the UN, the National Network for HIV-­Positive People (NETHIPS), and the National AIDS Secretariat all attended the event; many were seated at a high table reserved for dignitaries. These officials presented statistics, delivered rousing sermons, and called on the HIV-­positive among them to disavow silence and shame and to speak publicly about their illness. Such public disclosures, they argued, would inform community members that the HIV-­positive are “like everyone else,” coping with a chronic disease like any other. During the question-­and-­answer session, a journalist asked the expert panel, “How can you tell us that the disease is like any other disease but then treat it like it’s not? We’re having a press conference about it. There’s separate money for treating and dealing with the disease. Isn’t separating it also marginalizing the disease? Aren’t you marginalizing and causing discrimination by making it separate like this?”2 The journalist’s question was provocative, as it openly acknowledged the contradictions inherent in and produced by HIV exceptionalism. “HIV exceptionalism” is a term used by policymakers and researchers to denote the relatively large amount of money designated for programming associated with HIV. With Sierra Leone’s HIV prevalence hovering around one percent, and with substantial amounts of the country’s health budgets going to HIV/AIDS prevention, care, and support, the journalist’s question made a lot of sense. Why did these HIV campaigns exist in isolation from other pressing health concerns? 42

Exceptional Life, Exceptional Suffering  ·  43

This question remained unarticulated—­inarticulable even—­among the people with whom I worked. Because HIV-­specific programs provided generous stipends to their workers and other unique benefits for the HIV-­positive, challenges to HIV exceptionalism were expressed indirectly and with ambivalence, if at all. Sometimes, government health workers and social service providers working “on loan” to HIV projects told me that they had become bored with caring exclusively for HIV-­positive patients. Still, they used the flexibility, comfortable pay scales, and perquisites to build their resumes, travel internationally, and expand their professional and social networks. Some of my HIV-­positive friends expressed ambivalence about embracing HIV-­based identities and, at times, flatly refused to govern their lives based on their positive status. Yet, identifying as HIV-­positive and shaping one’s life around HIV status—­what the NGO programs deemed “living positively”—­provided an opportunity to secure desperately needed financial and food aid. In places like Sierra Leone that suffer from radical inequalities and broken health systems, HIV exceptionalism actually serves to amplify existing disparities. On the other hand, it also provides a means by which poorer HIV-­positive people can benefit from a health care system that normally privileges the priorities of its wealthy donors. HIV exceptionalism produces unique representational and accounting practices (who and what counts) that shape HIV-­oriented programs and the formation of HIV-­positive identities. Institutional discourses that foreground the war—­as discussed in the previous chapter—­are linked to interagency attempts to establish connections among HIV/AIDS prevalence, sexual violence, and an “exemplary” war. Key debates among public health experts over HIV exceptionalism prompt questions about what and who counts—­in multiple senses of the word—­in determining the allotment of health, HIV/AIDS, and development aid. In the context of the post-­conflict state, whether and how war affects HIV transmission and prevalence—­and consequently, funding streams for HIV prevention and treatment—­are intimately linked to debates about HIV exceptionalism. Together, conceptions of war and the presumed links between war and HIV lay the foundation for programs shaped both by a belief in HIV exceptionalism and Sierra Leone’s exemplariness. These conceptions also reveal the calculus of power through which development and ­public health projects operate and the program-­inflected identities they produce.3

44  ·  Exceptional Life, Exceptional Suffering

This chapter examines the ways HIV-­positive individuals use knowledge produced by and communicated through both enumerative (sero­ prevalence rates) and vernacular accounting (often in the form of NGO narratives of vulnerability). HIV sufferers use both forms of knowledge to demarcate and police the boundaries of their exceptional status. Interagency debates over the relative importance of enumerative and vernacular evidence also shape people’s interactions with HIV programs in Sierra Leone.

Reckoning with an Exemplary War Accounting for Sierra Leone as a “failed,” rebuilding, and “developing” nation usually involves reckoning (with) assaults against Sierra Leonean bodies and transgressions of Sierra Leone’s borders during the war. The effects of the war were numerous and devastating. One to two million people (25 percent to 50 percent of the population) were displaced from their homes; 25,000 to 50,000 people were killed or disfigured; 80 percent of structures in the most-­affected regions were destroyed; and tens of thousands (about 9 percent) of women experienced sexual violence. Other numerical forms, ranking, indices, and proportions highlight the dire situation of Sierra Leoneans in the war’s aftermath. In 2005, Sierra Leone ranked 176 out of 177 countries in the Human Development Index; 70 percent of Sierra Leoneans live below the poverty line; 35 percent of Sierra Leoneans are literate; and in 2009, the annual per capita income was $900, up from $500 at the end of the war. Nonenumerative—­or vernacular—­accounts also figure prominently in assessing the war and its effects.4 I use “vernacular accounting” to distinguish narrative and journalistic accounting practices from statistical and enumerative ones. More specifically, I suggest that NGO vernacular accounting practices involve collecting narratives from “wounded subjects” to describe a problem and propose programmatic interventions (Brown 1995). In contrast, governmental and multilateral organizations often rely on enumerative and probabilistic practices to quantify problems and their trajectories. In its common usage, vernacular can refer to a native or indigenous perspective; this use applies when NGOs claim that their knowledge about communities derives from an ability to engage local perspectives and document “grounded” experience—­however contested these claims may be.5

Exceptional Life, Exceptional Suffering  ·  45

When used disparagingly, vernacular accounting refers to a nonstandard or disfavored method of communicating the nature of a problem. Conversely, enumerative (e.g., census-­taking) and statistical accounts provide a bird’s eye—­some might say an objective—­v iew of a population and its problems (Scott 1998). In debates maintaining an antagonistic opposition between the vernacular and the enumerative, quantitative accounts are the standard; if expertly implemented, they are assumed to precisely and accurately depict the extent of a problem. This distinction between vernacular accounting and enumeration—­ with NGOs linked to the former and governments to the latter—­does not reflect the messy reality of development work. NGOs count their beneficiaries and are often required by their donors to conduct surveys and use numbers to justify their work. Quantitative researchers work with NGOs, sometimes conducting focus groups or interviews to supplement survey or costing data. Yet, as I will later argue, there is a tension underlying many of the debates over the authority of knowledge produced by NGOs and that produced by their governmental and UN counterparts. This tension highlights the distinction between the nonenumerative and the enumerative, the vernacular and expert, the grounded and the objective.6

HIV Exceptionalism: Numerical Incongruence and Vernacular Double-­Binds The proponents of HIV exceptionalism assert that HIV is a disease like no other, necessitating a focused, intensive response not required by other diseases. As Peter Piot, the former head of UNAIDS, argued: “This pandemic is exceptional because there is no plateau in sight, exceptional because of the severity and longevity of its impact, and exceptional because of the special challenges it poses to effective public action” (Piot 2005, 2). “The exceptional status accorded HIV, and its excessive relative funding, has produced the biggest vertical programme in history, with its own staff, systems, and  structure” (England 2007b). Health economists and health systems experts openly question such programs, often highlighting numerical inconsistencies and downplaying vernacular accounts that privilege HIV’s uniqueness. For example, Roger England, an independent health systems analyst and vocal opponent of HIV/AIDS exceptionalism, notes that HIV/AIDS funding makes up 40 percent of total funding for

46  ·  Exceptional Life, Exceptional Suffering

health in Africa, despite comprising only 18 percent of disease burden (England 2007b). Roger Bate, a health economist at the American Enterprise Institute, testified before the U.S. Presidential Advisory Council on HIV/AIDS (PACHA) in 2006, noting that $8 million of the $14 million devoted to health in Sierra Leone was disproportionately allotted to HIV/ AIDS (Bate 2006). Critiquing the “multiple vulnerabilities” model for dealing with HIV, England asks: What is all this money being spent on? Much of it goes to “­multisectoral” activities and “mainstreaming” HIV into just about every social activity. These have become the emperor’s new clothes of public health. The World Bank’s evaluation notes: “projects are complex with many participants engaged in activities for which they have little capacity, technical expertise, or comparative advantage.” (England 2007b) Others have suggested that political agendas and moral anxieties around sexuality are to blame for ineffective HIV prevention programs (Epstein 2007; Scheper-­Hughes 1994). Recent research by health economists and political scientists has suggested that vertical HIV funding has not helped to improve health systems, as was once suggested (Shiffman 2008; Shiffman et al. 2009; Piot 2005). Health aid, from these critical perspectives, would be best used to strengthen health systems and to integrate HIV/AIDS into existing systems of care. These recommendations suggest another way in which numbers matter and can work in tandem with vernacular accounts of HIV’s uniqueness to shape HIV/AIDS prevention and treatment. While the problems with HIV exceptionalism were first debated in the United States in the late 1980s, discussions about HIV exceptionalism within the global health realm first appeared to be confined to Western elites, with few insights from HIV-­burdened communities.7 However, a recent study conducted in Malawi, where the HIV burden is quite high, showed that many respondents favor reducing HIV-­specific services in support of expanding and improving general health services and development activities (Dionne et al. 2011; Dionne 2012). Still, the wider NGO community largely supports exceptionalism, by citing grounded experiences with HIV in countries of the developing world (England 2008; see, for example, responses by Over and Pettitt).

Exceptional Life, Exceptional Suffering  ·  47

Many donors and the nongovernmental organizations that fund and implement prevention and care programs—­some of whom have responded to Roger England’s arguments directly—­oppose any change in the way HIV/AIDS is funded. These proponents of the status quo cite the stigma that continues to accompany an HIV diagnosis and the multifactorial vulnerabilities (e.g., gender inequality, poverty, and marginalization) that contribute to HIV transmission (England 2008; see, for example, responses by Greyling and Cohen). Herein lies the double-­bind of HIV exceptionalism: to deem HIV a run-­of-­the-­mill public health problem is to understate one of the most challenging biomedical and social problems of our time. When we ascribe such enormous cultural weight to the disease, however, it becomes almost impossible to justify sublimating HIV to a broader health care agenda—­even in low-­prevalence settings. This double-­bind shapes interinstitutional debates about the relationship between HIV prevalence and war and the “calculations” upon which institutions base their respective claims. These debates amplify epistemological rifts—­particularly around the use of numbers and vernacular accounting practices—­and shape the power dynamics among the development and NGO communities in Sierra Leone and abroad.

The Truths about HIV With the HIV/AIDS epidemic increasingly framed as a security issue—­ as both emerging from political disorder and, at times, causing it—­HIV/ AIDS prevention and treatment programs figured prominently in official and unofficial discussions about postwar rebuilding (Vieira 2007; de Waal 2003; Whiteside 2008). The numbers associated with “seeing” the epidemic—­a long with the widespread violence and instability presumed to be characteristic of postcolonial Africa—­are central to these framing projects. The following statistics and associated facts from UNAIDS set a numerical stage. At the end of 2007, about 33 million people worldwide were living with HIV, the virus that causes AIDS. Each year around 2.7 million more people become infected with HIV, and two million die of AIDS. Although HIV/AIDS has been found in all parts of the world, southern Africa is the most affected, with nearly one in five adults infected with HIV (UNAIDS 2008). West Africa, however, has some of the lowest infection rates in all of sub-­Saharan Africa. The highest rates are in Nigeria,

48  ·  Exceptional Life, Exceptional Suffering

with a prevalence of 3 percent, and Côte d’Ivoire, with a prevalence of 4 percent. Around one percent of Sierra Leoneans are HIV-­positive; this figure is among the lowest in West Africa. Because Sierra Leone’s civil war was characterized by widespread sexual violence, an influx of troops from high-­prevalence areas, and changing sexual networks, this prevalence figure is lower than many observers would have expected. Debates over prevalence figures reveal how numbers and the conditions of their collection, interpretation, and dissemination mirror concerns about the power, truth, and trust in representations of suffering and risk. These figures are often contrasted with vernacular accounts—­particularly those disseminated by NGOs—­revealing the rifts in public health’s data collection modalities and their differing constructions and productions of HIV-­related knowledge.

Immodest Claims of (Non)Causality: The Link between War and HIV In 2002, Save the Children (SC) issued a report entitled, “HIV and Conflict: A Double Emergency,” in which the author drew an explicit link between HIV/AIDS and war (Lawday 2002). Speaking specifically about African conflicts and drawing on testimonies collected in conflict-­affected countries, the report claims that “in war, HIV/AIDS spreads rapidly as a result of sexual bartering, sexual violence, low awareness about HIV, and the breakdown of vital services in health and education” (Lawday 2002, 1). According to this logic, Sierra Leone’s civil war should have increased HIV within Sierra Leone. Yet later during the year the SC report was released, the U.S. Centers for Disease Control and Prevention (CDC) conducted a seroprevalence survey that showed HIV prevalence for the entire country to be less than one percent, as I already noted.8 The low figures reported by the CDC were questioned by a variety of actors. Many government health officials expressed their doubts about the figures publicly. During a training workshop in 2007, a support group leader and an infectious disease physician both openly expressed disbelief that HIV prevalence could be so low, given the high rates of sexual assault against women. In February 2005, Brima Kargbo, then the acting head of the National AIDS Secretariat (NAS), said that “we plan to carry out a national survey in March or April to determine the real AIDS prevalence rate in the country” (IRIN 2005, emphasis added).

Exceptional Life, Exceptional Suffering  ·  49

In mid-­2005, I attended a joint meeting of the NAS, UNAIDS, and international and local NGOs. My workgroup was tasked with deciding which surveys and routine data collection activities should be included in Sierra Leone’s application to the Global Fund for AIDS, Tuberculosis, and Malaria. To ensure that we did not propose duplicating existing data collection efforts, the head statistician for NAS told us that a national prevalence survey was already underway. This survey would provide the new baseline information for planning prevention and treatment programs. He said the new data would replace the CDC figures reported years before, stating, “Those CDC numbers just can’t be correct.” Government officials and health workers insisted that the CDC sero­ prevalence figures were incorrect for at least three reasons: they distrusted foreign sources’ ability to produce reliable information about local contexts; the CDC numbers were incompatible with “vernacular accounts” linking war and HIV; and both government and health workers wanted their AIDS funding to continue. Several of my informants—­including doctors, nurses, and HIV activists—­expressed doubts that a foreign agency would be capable of knowing and representing the local experiences of war through the calculations they produced. The doubt derives, in part, from the “commonsense” assumptions—­or vernacular accounts—­linking war and increased HIV transmission. Together these doubts suggest that the “present absence of certainty itself [is] constitutive of the hope for, and drive for, future truths” (Brown 2005, 332). The “future truth” for which these doubters hoped was, ironically, a higher HIV prevalence. A higher prevalence estimate would corroborate the small-­scale studies and sentinel surveillance data collected from government antenatal clinics and sex workers in the 1990s, which estimated a 7 percent to 20 percent prevalence, a figure that justified extensive HIV prevention efforts (Government of Sierra Leone 2001). These sentinel surveillance figures were also used to estimate the amount of AIDS funding that Sierra Leone received (which comprised more than half of the country’s health budget in 2004), and higher figures were required to justify the continuation of this generous HIV/AIDS funding. The government’s need to know the “real prevalence”—­a nd its doubts about U.S.-­based experts’ ability to understand and represent local realities—­ prompted the government to contract a Ghanaian consulting firm for data collection and analysis. In 2005, the firm reported seroprevalence estimates similar to those published by the CDC years before. For those

50  ·  Exceptional Life, Exceptional Suffering

who anticipated an HIV prevalence “four or five times” the CDC estimate—­a prominent UNAIDS official among them—­t his new figure came as a surprise. Inverting the role of war in HIV transmission, they warned that post-­conflict economic conditions could cause the epidemic to “explode” (IRIN 2005). Thus, officials redirected their focus from war’s role in the production of uncertain estimates of “present truths” to the present truths’ uncertain predictive value. In 2007, as a follow-­up to a 2004 Disasters article, which criticized media and institutional reports for making a facile link between HIV and conflict, Spiegel and colleagues published an article in Lancet that presented epidemiological evidence to support their critique (Spiegel 2004; Spiegel et al. 2007). The authors drew seroprevalence data from seven conflict-­affected countries and established that the association between war and HIV transmission is neither a predictable nor a causal one. The Reuters news agency, upon receiving the results of the study, released an article with the provocative title “Wars Don’t Fuel African HIV Crisis: Study” (Dunham 2007). In an interview with Reuters, Spiegel stated that the discrepancy between his findings and those of the NGOs—­like those reported in 2002 by SC—­probably stemmed from “incorrect interpretation of data” or “inadequate study methods.” In other words, the methods used by NGOs to understand their target populations were insufficient to discern the relationship between HIV/AIDS and war in these communities. Nor were they up to interpretive snuff for predicting or explaining “truths” about the HIV epidemic in Sierra Leone. Such bold claims to truth revealed the powerful stakes for state and nongovernmental institutions to produce authoritative knowledge. They also inform how audiences judge the types of investigative practices governing authoritative knowledge statements. The HIV/AIDS advisor for SC, Gopa Kumar Nair, rebutted Spiegel’s claims in an interview with Reuters, emphasizing SC’s own claims to producing knowledge about the HIV epidemic in Sierra Leone. He said, “Our experience from the field clearly shows that there is a huge link between vulnerability to HIV and conflict. We have seen community-­based health systems breaking down” (Dunham 2007). By focusing specifically on “vulnerability to” HIV, Nair highlights the centrality of the potential and the emergent in his own calculations. Like Kargbo and the government statistician, he also refocuses the debate on the uncertainty and

Exceptional Life, Exceptional Suffering  ·  51

ambiguity that lie at the core of both probabilistic reasoning and vernacular accounting of experience. The two ways of seeing and knowing about the HIV epidemic in Sierra Leone—­when juxtaposed with each other—­are epistemes engaged in a struggle for the “real,” “the attempt to impose . . . a particular conception of how things at the bottom are and how men are therefore obliged to act” (Geertz 1973, 116). The tension between the enumerative and the vernacular is central to understanding debates between SC and the United Nations High Commissioner for Refugees (UNHCR) and epistemological conflicts within global health institutions more generally. When Spiegel expresses distrust of NGO-­documented narratives of suffering and the claims of causality that they presume, he rehashes a common critique of vernacular accounts: such accounts are substandard and fail to reflect “reality.” While vernacular accounts of the HIV-­positive—­or the HIV-­v ulnerable—­may adequately represent experiences of living with HIV or of extreme suffering in wartime, they do not tell us the extent to which HIV qualifies (or quantifies?) as a problem. But Nair’s defense of SC’s methods should remind us that statistics’ ability to “see” populations is also limited by the nature of the “universe” from which they draw their sample, the “purity” of the sample itself, the data collection protocols, and the management of data outside the field (Biruk 2012). The seroprevalence figures fall, as anthropologists Jean Comaroff and John Comaroff have noted about South African crime statistics, “somewhere between unknowable and axiomatic” (Comaroff and Comaroff 2006, 239). If we take seriously the government’s and NGOs’ focus on HIV as an issue that is separate from but central to other post-­conflict development concerns, the accounting debate demonstrates that, regardless of their proximity to truth, both statistical and vernacular accounts have their use value—­even if they contradict each other. In fact, when they do contradict each other, they can be deployed simultaneously to represent another “fact” or “truth.” Symbolically, HIV is a marker of disorder and vulnerability; when coupled with low prevalence, it renders HIV-­positive individuals’ suffering unique. As I describe in the next section, the experience of HIV sufferers is modified both by the insignificant number of people who have the disease and by the seemingly vast resources allotted to them. These numbers do not reflect the magnitude of the disorder and disintegration that many Sierra Leoneans experienced—­or expected—­as

52  ·  Exceptional Life, Exceptional Suffering

a result of the war. Still, the conflation of HIV with vulnerability buttresses the claims of those who adopt HIV-­linked vulnerability as part of their identity, or as representative of a special—­perhaps, exceptional—­ kind of affliction.

On Exceptional Suffering and HIV Exclusivity Before the antistigma press conference in October 2007, I spotted several soldiers, whom I recognized from HIV support groups, in the middle of an argument. They were upset that, until a few weeks before the press conference, they had been allowed to obtain multiple food rations and home-­based care kits from different HIV support groups. The support group leaders had more recently forbidden this practice. Angrily, the soldiers suggested that they had been “outed” by an “informant.” I soon discovered that they thought the informant was me. For at least a year, support group leaders had been devising a plan to stop “duplication of services” (their term for people seeking assistance from multiple groups), ensuring that everyone who needed food aid would receive it. They knew that many of the “duplicators” were soldiers and their wives. The soldiers held steady jobs and, for the most part, received steady pay. By visiting multiple groups for supplemental food and other forms of assistance, the soldiers were perceived to be unjustly supplementing their incomes. Granted, men and women who had a steady source of income often had more dependents—­a couple of cousins from the provinces, an extra set of nieces and nephews to put through school—­but they also received a (meager) monthly salary, preferential enrollment for their children in the military’s schools, free health care, and a rice ration beyond what they received from the HIV groups. Others knew that their military service provided them with a relatively stable source of income and other forms of support from the government. When the soldiers confronted me at the end of the press conference, I reminded them that their leaders had long talked about stopping duplication and that most of the staff already knew they were seeking assistance from more than one source. (For example, one nurse at a civilian support group said she suspected that some of her clients belonged to the military support group because they had listed the barracks as their home ­address.) The soldiers’ anger was palpable. Siaka, who managed the support group with the reputation for providing the “best supply” and the

Exceptional Life, Exceptional Suffering  ·  53

“best meetings,” chimed in. He had previously warned the soldiers that they would have to choose one group from which to gather their supply. As I echoed Siaka and tried to explain that I had not “informed on” them, Abdul—­a soldier whom I had long admired—­interrupted me. “But you don’t know how we suffer! You don’t know what it’s like to be HIV-­ positive! You’re not HIV-­positive yourself. You don’t know what it’s like,” he said. Assertions like Abdul’s were common. Enumerative accounts of HIV in Sierra Leone, which suggest that HIV is not a problem for the larger population, and “grounded” descriptive accounts of HIV-­related vulnerability, work together to justify claims that being HIV-­positive represents a unique experience of suffering. In other words, everyone suffers, but HIV-­positive individuals can say that they suffer more—­no matter what their life experiences—­and that the nature of their suffering is incomprehensible to those not afflicted with the virus. To suggest that I had no idea what it was like to be HIV-­positive, Abdul was claiming that the HIV-­ positive experience was unique and that it was uniquely shared by people who harbored the virus in their bodies. During a support association meeting on the East End of Freetown, a group member shared her experience managing others’ knowledge of her HIV status and the goods her HIV status conferred. Hands on her hips and baby tied to her back, Safiatu rose from a wooden bench. She told us that after she collected a food ration from her support association, she walked back to her neighborhood with a bag of grain that she clearly could not have purchased herself. Her neighbors asked her, “Where did you get that bag of rice?” Her audience interjected that they, too, had similar experiences when they returned to their neighborhoods with food rations from the HIV/AIDS association meetings. After her compatriots quieted, she told us, “I told them my baby was born small, and the people [presumably from the health organization that she said gave her the rice] felt sorry for me. So yu no get chans [so you won’t have an opportunity to get anything from them].” Her explanation quieted neighbors’ curiosity about her coveted rice source. It also kept her neighbors from questioning her means of acquiring such valuable goods, which they might believe to be possible only because of HIV/AIDS or bambot (exchange of money or goods for sexual favors). People in the audience nodded, a few clapped, and others made noises of agreement. Safiatu sat down, with a satisfied expression; she appeared to be proud that she could share her quick thinking

54  ·  Exceptional Life, Exceptional Suffering

with the others. Indeed, she was praised by the support group leader for astutely managing information about her HIV status and the source of her rations. In another case, members and staff at a support association near the hospital suspected that some of their members were not HIV-­positive. Even members from other support groups gossiped that this particular association distributed food rations without having verified every member’s status. In response to gossip and member concerns, two women were sent to a testing center for a process the HIV counselor called “verification.” Mariatu, a counselor whom I observed intermittently for several months, admitted them as her clients. When she was about to take their blood, they “begged” her for a false positive report so that they could continue to collect the benefits. Of course, Mariatu could not agree to give them what she called “false positives,” but she empathized with their predicament. Food supplements, skills training, and business start-­ up kits were not easy to come by—­even in the most saturated of NGO markets like Sierra Leone’s. The women who sought to falsify their test results were eventually turned away from receiving general HIV benefits, but were kept in the program ledgers as “vulnerable women.” This way, the two young women could continue to be counted among those receiving benefits (“beneficiaries”) in reports to donors. Beneficiary numbers—­inflated by these two women and others without verified test results—­bolstered the organization’s claims that it was supporting a range of “at-­risk” or “vulnerable women” with donor resources. As a consequence, the organization was able to leverage its status as a prevention, care, and support organization to a variety of national and international donors (diversifying its programming portfolio), ensuring a variety of funding sources. Unsurprisingly, perhaps, the retention of “vulnerable” women in HIV programs continued to provoke grumbling among members of other HIV support groups. This indicates that the boundaries of HIV-­positivity are carefully monitored—­if not always successfully policed—­by those who reside within them. In this context, program planners have sutured numbers—­in the form of donor funds, beneficiary counts, and vernacular accounts of hardship and vulnerability—­to bolster their authority to intervene in the distribution of goods and services. Recently, long-­term observers of HIV care in other countries have argued that HIV care and support programs foster competition for scarce

Exceptional Life, Exceptional Suffering  ·  55

resources (Kalofonos 2010). But I suggest that something different is happening here. First, the low prevalence of HIV and the relatively generous support provided through these programs means that resources are not scarce; in fact, they are actually plentiful compared to other health and development programs. Members of support associations did not “inform on” Abdul and his soldier colleagues. Program leaders simply withdrew resources, citing bureaucratic and managerial concerns with equity. Thus, the emphasis is not on who among the HIV-­positive receives her share, but who can rightfully claim to be HIV-­positive in the first place. In other words, the limits on determining resource recipients are driven by the boundaries erected between the HIV-­positive and the non-­HIV-­ positive, not within the ranks of the HIV-­positive. This is not to say that resources are always distributed equally among members of the support associations. Members who actively pursue leadership roles or appear to advance HIV-­oriented agendas in the public sphere (e.g., publicly disclosing status or performing educational outreach) may have greater access to the perquisites of HIV workshops, per diem allowances, and international conference travel. Being literate, charismatic, or publicly articulate has helped some HIV-­positive individuals move from member to manager, volunteer to employee, Freetown to London. These differences do cause conflicts within the groups, but they are not as problematic as an HIV-­negative person claiming benefits from the group. Unlike the soldiers who were caught “duplicating,” however, civilian members often chose a single group from which to draw their benefits out of respect for other HIV-­positive individuals. When HIV support group members quietly grumbled that two women had been obtaining rations without having had their serostatus verified, the two female “suspects” were excluded from special meetings and rations distribution (although these women did retain their vulnerable women status and continued to draw funding from their organization and took advantage of vocational education benefits). When support group members received their monthly ration, they hid its source—­not only to shield themselves from judgment that might accompany an HIV-­positive status (as some antistigma advocates might suggest), but also to send a message to those in the know that they belonged to a special group to which HIV-­negative people had little to no access. When it seems useful, people like Abdul claim HIV is a unique form of suffering that requires special attention from those with the resources

56  ·  Exceptional Life, Exceptional Suffering

to ameliorate it. Vernacular accounting by institutions—­the kind of accounting that conflates HIV with vulnerability—­buttresses Abdul’s claim that HIV is a special entity. The disease’s uniqueness in Sierra Leone is further compounded by low prevalence and the mystery surrounding this “fact” of statistics. The epidemiology of HIV/AIDS in Sierra Leone, as I described earlier, is incommensurate with local knowledge about what conflict does to people and the lack of neat overlap of multiple idioms (and indicators) of disorder—­war, AIDS, and poverty—­onto Sierra Leone. The most pressing of vulnerabilities that HIV-­ positive individuals face—­albeit to different degrees—­is the possibility that they may fail. “Failure,” in this case, means an inability to perform well enough, to model the most responsible behavior, or to showcase a robust self-­esteem. In other words, their vulnerability depends on the seemingly fickle whims of individuals working for powerful institutions who decide the “rightful” recipients of this care. This perception results in frustration and cynicism about health programs, particularly when there are insufficient resources for all who need them, and when inequitable structures destabilize the country’s economy, making a life of poverty nearly inescapable. Many observers have focused on the role of enumerative practices in self-­and state-­governance and the ways that people embrace these numbers to self-­identify and organize around a shared experience (see, for example, Comaroff and Comaroff 2006; Hacking 1982; Urla 1993). Adding to these observations, I have argued that vernacular accounting modifies enumerative accounts, consolidating HIV-­infected identities and practices of exclusion among HIV-­positive individuals. Although experts claim that vernacular accounts defy scientific and rational modes of identifying, categorizing, and governing bodies, I have found that they are in a mutually constitutive relationship with enumerative and statistical accounts. The categories produced through techniques of enumeration are always already constituted in vernacular accounts of experiences of war, HIV/ AIDS, and the social, cultural, and political ills they claim to represent. In other words, the numbers inform how people tell their stories; the stories people tell shape the categories used to collect numerical data. The public health and development power brokers distinguish their modes of “accounting” or reckoning the HIV problem in Sierra Leone by highlighting their differences in approach—­including their ontological perspectives (being “on the ground” versus viewing from above), their techniques for generating such knowledge (enumeration versus descrip-

Exceptional Life, Exceptional Suffering  ·  57

tion), and their ability to represent and predict present and future truths. These various shades of gloss are useless to the individuals these forms of knowledge purport to describe, depict, and represent. The HIV-­positive people I encountered often adopted useful aspects of both accounting methods, to promote their own welfare and to generate opportunities for accumulating goods, services, and benefits from varying institutions and organizations. HIV experts center their debates on the authority of these seemingly disparate truths and how they diverge from each other in terms of perspective, techniques, and relations to time. On the other hand, HIV sufferers—­ through their embrace of and unique mastery of both “truths”—­suggest how these truths converge and work together to confirm preexisting ideas about Africa, AIDS, and war.

This page intentionally left blank

II

Becoming HIV-­Positive

This page intentionally left blank

3

The Imperative to Talk Disclosure and Its Preoccupations

NAS-­NETHIPS-­U NAIDS NETWORK OF HIV POSITIVES IN SIERRA LEONE In collaboration with NAS/UNAIDS LAUNCHING CEREMONY ON 19TH DECEMBER, 2006 Miatta Conference Hall, Brookfields Theme: Time to deliver Motto: Living positively with HIV Time: 9 am When I entered the Miatta Conference Hall for the launch of a new network of HIV support associations, a meticulously produced choral version of “The First Noel” was blaring over a rock concert−grade sound system. Bottles of water were placed at the high table, and the coordinators, wearing HIV/AIDS-­themed T-­shirts were traveling up and down the aisles, putting small, plastic waste bins at the end of each row for financial contributions to the new organization. After a few minutes of loud music and a rapid ascent of dignitaries to the front of the auditorium, the meeting opened. The emcee introduced Fatmata Kuyateh, acting director of Women Fighting AIDS (WFA), and read her impressive and long resume: she had trained at the PhD level in microbiology and public health in the United Kingdom, and had been recently appointed as the chairman of the board of directors for a local AIDS organization. When Kuyateh rose to speak, she prefaced her formal speech by telling the audience that she was traveling in England when she was invited to speak at the meeting. She was set to refuse the invitation, but the person who invited her told her that she really needed to attend the meeting. She agreed to come and deliver her speech, she told us, because she “had been prioritizing the needs of 61

62  · The Imperative to Talk

HIV-­positive people for years,” especially through her work as acting director of WFA.1 She continued: “I tried to write a speech on my journey back to Freetown from the U.K., but decided, instead, that I needed to speak from the heart.” After pausing for dramatic effect, she continued with her speech in English (a language that many audience members did not speak well, if at all), in which she emphasized that they needed to be self-­reliant and independent. She argued that they should not expect to receive assistance from HIV organizations, but instead, devise new ways to make a living and to secure a livelihood. “A human being is only respected when he does things for himself!” she said. Kuyateh scolded the audience for asking for handouts: “What were you doing before you had HIV?” She suggested that people venture beyond soapmaking and gara tie-­and-­dye projects to make their living.2 There was spirited applause in the front row of seats. Kuyateh ended her speech with a stern declaration to her audience: “Raise your self-­esteem!” That Kuyateh ended her speech on the subject of self-­esteem—­addressed to an audience of government and NGO officials, and HIV-­positive people, no less—­was no coincidence. In addition to hinting at her own healthy self-­ esteem (which was evinced by her impressive qualifications, seat at the high table, and humble acceptance of an invitation to deliver her speech), she also drew our attention to how self-­esteem language is deployed in conjunction with experiments to generate social change, economic advancement, and self-­improvement in Sierra Leone. Barbara Cruikshank, writing of social welfare reform in the United States, demonstrates how “self-­esteem movements,” or movements that look to individuals’ self-­ concepts and self-­esteem for effecting and sustaining positive social change, are “premised upon the limits of politics and the welfare state, the failures of . . . democracy, and upon the inability of government to control conflict” (Cruikshank 1993, 328). Her description seems especially apropos to the Sierra Leonean context, where social service programs like the HIV/AIDS and gender-­based violence programs, with which I am most familiar, focused on individual change in tandem with local activism against oppressive “cultural” regimes. In late 2006, for example, I was asked to evaluate a peace-­building program in Kailahun district, the site of the first and last battles of the country’s civil war and therefore a prime location for grassroots civic

The Imperative to Talk  ·  63

education and peace-­building programs. Implemented by a consortium of international NGOs with expertise in gender-­based violence prevention and case management, psychosocial therapies, and media approaches to conflict resolution, the programs I evaluated—­a longside others that I learned about during a month-­long stay in Kailahun—­focused on transforming community values presumed to have sparked the conflict and cultivating democratic governance. In addition to “strengthening civil society,” the stated objective of the program’s funders (in this case, the U.S. government) was to instill democratic values in individuals, and by extension, families and communities, through (civic) education initiatives (www.usaid.gov). These programs also promoted conflict resolution skills among a population brutalized by a decade of war, suggesting that individuals’ inability to resolve interpersonal conflicts was among the war’s causes. During and immediately after the civil war, international NGOs in collaboration with UN agencies and local NGOs often bypassed state institutions, suggesting the inability of the state or its institutions to carry out the work of social change, and necessitating that individuals generate a “revolution from within” (Cruikshank 1993). Thus, programs focused on initiating social change did so through instigating self-­transformation, self-­actualization, and behavior modification. Unlike the American case addressed by Cruikshank, in which the failure of the American state is implicit, the failures of the Sierra Leonean state are explicit and central to the aims of these programs, as well as their execution. More specifically, the failure of the state to provide adequate welfare solutions for the multitudes of poor (even with the abundant assistance of Western donors) is evidenced by high maternal and under-­five mortality rates, poor marks on key economic development indices, and, redundantly, its consequent inability to institute a welfare state. In other words, individual change—­in the form of “rehabilitation” and “reintegration” for ex-­combatants, mother-­centered campaigns around improved breastfeeding practices, or in individual-­level behavior change espoused in HIV/AIDS prevention programs—­lies at the center of narratives that posit a solution for social change at the national level. Related to Kuyateh’s insistence that HIV-­positive people in attendance at the meeting raise their self-­esteem is also an insistence that they “live positively,” a mantra with which anyone familiar with HIV programs is certainly acquainted. As the banner at the beginning of this interlude also shows, the command also served as the motto for the celebration. It

64  · The Imperative to Talk

featured prominently in the carefully crafted and well-­rehearsed skits performed during the course of the daylong events. And like any mantra, “positive living” has both spiritual and mundane dimensions. That is, its invocation in support groups and workshops indexes a curiously transcendent form of self-­transformation, while its constant repetition in these same settings dampens its spiritual quality, often eliding careful consideration of what “positive living” might mean for the people expected to espouse the ideals presumed within it. In addition to describing the rise of self-­esteem in efforts to effect social change, Cruikshank argues that self-­esteem is a technology for “producing certain kinds of selves, or ‘making up people,’ (Hacking 1982)—­ and using specialized knowledge of how to esteem ourselves, to estimate, calculate, measure, evaluate, discipline, and judge ourselves” (Cruikshank 1993, 329). It also provides the framework for activities or technologies that inculcate a sense of what it means to “live positively” with HIV. Such technologies that bring HIV-­positive people into being are what I will call, drawing on the work of Janelle Taylor, “surfacing projects,” or a set of interventions that aim to encourage HIV-­positive people to speak openly about their HIV status, and to be engaged in a wide range of activities that render their condition visible (or invisible) to agents responsible for designing and implementing health interventions (Taylor 2005). While the sociological and anthropological literature is clear about the various political, cultural, and social stakes for concealing intimate knowledge about oneself and managing self-­presentation (Bok 1989; Ferme 2001)—­of which literature on HIV disclosure is technically a part—­it is less clear about how we might interpret an ethics of HIV disclosure when it is sutured to programmatic virtues like “positive living,” economic enrichment, and professional advancement. How do we navigate the various ethical and moral (dis)closures, stumbling blocks, and opportunities that coerced disclosure, or an imperative to talk, constitutes in the experience of HIV-­positive, poor people? Or, more broadly, what are the stakes of a “surfaced” positivity that is intimately connected to an industry?

. . . On a dry, hot day in early 2007, I offered a ride to Hawa and Abu, two social workers at the Community Health Program’s (CHP) HIV care

The Imperative to Talk  ·  65

and support organization, to conduct home visits in the city’s West End. As we entered the downtown area, we saw Nafisatu, a staff member from the AIDS Support Association (ASA), walking toward her organization’s headquarters. I decelerated and honked the horn as Hawa and Abu waved at her. Nafisatu waved shyly, but she did not stop to chat. As we continued to our destination, Abu nodded back in Nafisatu’s direction and said, “Too many people remain silent about their HIV status.” Such silence, he added, affected those who were willing to talk publicly about the illness and their experiences with it. Abu went on to describe the experience of learning his diagnosis and his subsequent coming out as HIV-­positive: I really thought it was a death sentence. It was a woman, a woman who looked like an older version of you, who told me that I did not have to lose heart. She counseled me and told me that I could live with the disease if I took care of myself. I knew that I could keep living. It was not a death sentence. That’s what I tell the people I counsel. Despite his initial ambivalence about disclosing his status, Abu seemed perplexed by HIV-­positive people who refused to discuss their HIV status in support groups or in public—­especially if they looked healthy and attractive. Abu felt that Nafisatu should leverage her healthy appearance and speaking skills to help break down the “stigma” and “discrimination” that he felt HIV-­positive people generally faced. Abu was not Nafisatu’s only critic on this issue. Months before our encounter on the street, Alfred, the leader of the support association where Nafisatu worked, had told me that he wanted her to assume the role of deputy director. He said that her intelligence and competence—­ along with her secretarial training and managerial experience—­would make her an ideal second-­in-­command. Others in the health community supported his decision to hire a deputy and expected him to select someone who was HIV-­positive, as part of existing global initiatives to inspire “greater involvement of people living with AIDS (GIPA).” Nafisatu’s unwillingness to talk publicly about her HIV status, however, made it difficult for him to promote her to this new post. Alfred’s greatest concern was that she would not be able to make authentic claims on the behalf of HIV-­positive people in Freetown without

66  · The Imperative to Talk

having disclosed her status in some public forum. Alfred was considered to head the support association precisely because he had spoken about his illness at a widely publicized World AIDS Day event on international radio. As these stories about Nafisatu reveal, disclosure performs a multivalent role within HIV-­oriented organizations and programs. In this chapter, I locate the imperative to disclose within a history of the HIV epidemic in North America, where early public health efforts to identify the sources of AIDS and to contain its transmission were mapped onto multiple marginalized identities (such as “heroin addict” and “homosexual”); practices (like anal sex, sex work, and injection drug use); and geographies (such as San Francisco bathhouses, Haiti, and the inner cities). Activists seeking to disentangle stigma and blame from the disease openly targeted government silence; public ignorance, panic, and paranoia; and feelings of shame among the infected. A palliative for this collection of symptoms—­silence, fear, ignorance, and shame—­could be found in speaking out. Alongside this historical narrative of palliative HIV disclosure are the recent histories of Sierra Leonean truth and reconciliation initiatives and NGO advocacy for victims of war-­related sexual and physical violence. Public accounts of crimes committed, witnessed, and experienced—­at least, according to the architects and proponents of these initiatives—­are also palliative, in that they purport to rehabilitate ex-­combatants, anesthetize injured bodies, cool warm hearts, and soothe a wounded nation.3 Like layers of a palimpsest, these histories underlie and reveal themselves in present preoccupations with and interpretations of HIV disclosure in Sierra Leone, interpretations that also assign moral and emotional significance to silence and concealment. HIV disclosure and programmers’ preoccupation with it produces multiple meanings, interpretations, and social practices. Enshrined in moral discourse about what to believe and how to act in relation to HIV, disclosure shapes these expectations around “positive” behavior, particularly for HIV-­positive individuals. Disclosure is potentially profitable, given its role in professional advancement—­as demonstrated in Nafisatu’s story—­and its potential material and social benefits. Disclosure is speculative, in that it is risky in nature. It is also speculative in terms of what people believe that they can deduce about a person from his disclosure sta-

The Imperative to Talk  ·  67

tus. Disclosure is corrective, in that it is intended to help destigmatize and debunk myths about the disease. It is (re)generative, in that it is said to redeem the discloser. In its deployment, disclosure is meant to produce a wide array of sexual, moral, and behavioral choices for the discloser and her audience and to confer a politically valuable identity on the sufferer. In disclosing, the HIV-­positive individual responsibilizes—­generates responsible acts—­in both others and herself. Above all, disclosure practices are limited by clinical, interpersonal, and community ethics and couched in seemingly incommensurate—­but overlapping—­moral discourses: privacy and confidentiality, love and empathy, responsibility and propriety.

Disclosure and Its (Pre)Occupations Disclosure is a crucial organizing concept for HIV prevention, care, support, and advocacy activities, and it performs specific kinds of cultural work. Since the mid-­1990s, public health advocates and HIV activists have asserted the efficacy of public disclosure of and discussion about HIV to prevent transmission of the disease, to reduce discrimination against people living with HIV, and to relieve the psychological burdens of an HIV diagnosis. The gay-­led HIV movement emerging out of the 1980s promoted disclosure, the imperative of which rested on the powerful language of gay rights activism, which discursively linked HIV with “the closet” or “the secret” (see Alonzo and Reynolds 1995). Thus for liberation and a realization of their rights, HIV-­positive people needed to come forward—­or “come out”—­in public to give face and voice to the epidemic and to make others aware of their plight and their shared humanity. This gay rights−inflected disclosure model equated silence with shame, while public discussion of stigmatized identity was equated with “pride” (see Robins 2006). What are the pathways through which HIV disclosure is presumed to do its work? In addition to educating people and urging them to examine their risk, influential health institutions like the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) have suggested that disclosure prevents HIV transmission by intervening at individual, interpersonal, and community levels (Maman et al. 2003; Obermeyer et al. 2011). When one discloses HIV to a family member or

68  · The Imperative to Talk

friend, for example, one may receive encouragement and assistance in following the complex drug regimen, thereby improving adherence to treatment. Properly adhering to treatment reduces viral load, which reduces the likelihood of HIV-­related illnesses and transmission. Disclosing to a potential sexual partner, moreover, may increase the likelihood that sexual intercourse will be “safer,” as an informed partner may successfully “negotiate” for condom use. And finally, talking about one’s HIV diagnosis in public—­exemplified by HIV outreach speakers’ bureaus common in the United States, but not so common in Sierra Leone—­ may decrease HIV-­related stigma and discrimination. Additionally, psychological benefits have been widely cited as a benefit to disclosing HIV status; to disclose is to “liberate” oneself from the burden of a secret and to relieve feelings of shame and fear of rejection (Paxton 2002). Despite the apparent health, medical, and psychological benefits of disclosure, most people choose to reveal their HIV status to certain audiences only, whether public or private. This widespread practice of selective disclosure has prompted public health researchers to identify reasons for not disclosing one’s status—­as if full disclosure of one’s illness status could or should be the default behavior for HIV-­positive people. Researchers have found that people choose not to disclose their status fully because it confers a range of social risks, including loss of support, abandonment, physical and emotional abuse, and disruption of family relationships (Medley et al. 2004). These risks were especially serious during the earlier stages of the epidemic, when the disease etiology was unknown and no effective treatments existed for HIV and AIDS-­ related illnesses (Castro and Farmer 2005). Ultimately, these social risks fell under the rubric of stigma, in that they conferred “spoiled identities” on HIV-­positive people and alienated and marginalized these individuals from mainstream society. More recently, these risks depend on the availability of antiretroviral therapies, social safety nets, legal protection related to HIV status, community knowledge about HIV/AIDS transmission, and cultural constructions of HIV risk and epidemiology—­in other words, whether a nation claims to have “gotten HIV under control,” as in the current American discourse around HIV/AIDS. What has been underexamined in these discussions about selective disclosure, however, is the extent to which the interventions themselves—­outside the clinical interventions that specifically focus on disclosure as a program objective—­

The Imperative to Talk  ·  69

promote and shape disclosure. Locally inscribed notions of secrecy and revelation, and of silence and talking, also shape motivations and decisions to disclose.

How Interventions Promote and Shape Disclosure Post-­conflict development initiatives—­particularly those aiming to facilitate national healing and rebuilding—­often relied on narrative accounts of horrific war events. In particular, NGO advocacy against sexual and gender-­based violence sought to shed light on acts of sexual violence against women during war. The Truth and Reconciliation Commission (TRC), for example, encouraged people to come forward and “blow mind” (tell what has been troubling one’s mind), in an effort to “clear chest” (relieve psychological stress), in order to reconstruct an “objective account” of past events and make lasting peace (Truth and Reconciliation Commission 2004, 3–­4). Shaw describes an interview with one TRC community worker: I sensitize them. I explain what the TRC is. “Have you heard about the TRC on the radio? Let you come and clear your chest. The bad things that they did to you during the war, you should come and say them out.” I tell them the objectives of the TRC: “All the statements we collect will make one big book, to make history. . . . What they have done to you, it did not happen in vain.” Then normally they ask, “What will the government give me now?” They expect something. I tell them, “If you know what happened during the war [say it]. We don’t want that kind of thing again . . . When someone does you wrong, he comes and says he is sorry. You forgive him. So peace will come.” (Shaw 2007, 197) As part of my work documenting abuses against Liberian women refugees living in Sierra Leone, I also collected these stories. I offered my informants small remuneration for their time spent in the long, difficult interview, and I relied on earlier detailed accounts collected by Human Rights Watch and Physicians for Human Rights to buttress the quantitative data I collected. When anthropologist Rosalind Shaw returned to Sierra Leone to examine transitional justice initiatives in the war’s aftermath,

70  · The Imperative to Talk

she observed that many people were disillusioned with the “memorial imperative” that programs like the TRC entailed (Colvin 2005, 453–­54). Participants especially condemned the lack of reparative justice available for the traumatic events they narrated in service of transitional justice initiatives: A: I thought that when I talked, people would know my ­problems, and that I could sit in my house and see people coming to help me. RS: Has this happened? A: No. The TRC told the government to help us, but up to now, there’s no help. RS: Why did you feel bad when you talked? A: What happened to me, I didn’t want to explain it too much. RS: Are you glad or sorry that you talked? A: I am glad. RS: Has the TRC helped you get a cool heart? A: I got a cool heart—­a little. Because what they put on paper to pass on to the government, I haven’t seen any result. . . . If I get help, I’ll forget about the war. But if you don’t have help, you’ll remember the war all the time. Now I remember because no one helps me. . . . What happened to the paper carried to the government? Right now, we’re taking care of ourselves. (Shaw 2007, 207) I, too, faced questions about the extractive quality of the gender-­based violence survey and the data collection I coordinated among Liberian refugees. What would become of the stories, the countless survey cross-­ tabulations, beyond advocacy and justifying continued intervention? The unfulfilled promises, disappointments, and yes, the benefits of development and post-­conflict initiatives requiring testimonials remained fresh in the collective consciousness upon my return some years later. Voluntary, induced, and coerced confessions about war-­time experiences—­ prescribed by international institutions as a healing salve during the conflict and immediate post-­conflict periods—­invigorated a political economy in which narratives of suffering were produced, circulated, and accumulated. Such narratives acquired economic, professional, and therapeutic value.

The Imperative to Talk  ·  71

While reconciliation initiatives have clearly made their mark on how people interpret the imperative to testify, confess, and recount their experiences of suffering, HIV programs most significantly shape the risks and benefits of HIV disclosure. They do so, first, by ascribing particular meanings to HIV (“the secret,” “the exceptional”) and second, by defining the speculative social, financial, and professional benefits conferred through disclosure. Such programs assume that HIV is a secret requiring liberation from a place underneath a surfaced, visible reality. By making this assumption, HIV activists and programmers, perhaps unintentionally, align HIV with the specific cultural baggage—­meanings, interpretations, and power dynamics—­t hat accompanies secrecy and silence. Thus, efforts to compel people to disclose their HIV status—­and the intensity, depth, and scale of the penetration and reception of these efforts—­may be deeply challenged by individual and community notions of concealment, silence, and the appropriate management of clandestine knowledge, as described above. These accounts highlight the limits of “talk therapy” in settings where silence also has a role in mending social relations and rebuilding lives. Michael Jackson, writing of his return to Sierra Leone thirty years after his original fieldwork, writes: “There’s a radio jingle you hear on Freetown radio these days. ‘Come blow your mind, come clear your chest. Truth and Reconciliation—­the Commission we come for help we yone, Make peace sidon na Salone.’ But as a child ex-­combatant said to me, ‘I don’t want a lot of that kind of talk. I want to forget what happened’” (Jackson 2004, 154). Numerous scholars of the Mano River region—­which includes Sierra Leone, Guinea, and Liberia—­have focused on the cultural significance of concealment and its relationship to power in the lives of the region’s inhabitants. Mariane Ferme, in her writing about Mende strategies of concealment, notes that people often use strategies of concealment to protect themselves from threats posed by powerful individuals and institutions with whom they frequently interact (Ferme 2001, 161). This is where local notions of concealment and secrecy dovetail with global health conceptions of HIV disclosure. The HIV-­positive person maintains control of information about his health and thus of the situations in which this knowledge could be used to harm him or to challenge his control over himself and others. Rosalind Shaw, drawing on examples from her work among Sierra Leone’s Temne-­speaking people, suggests that openness

72  · The Imperative to Talk

and concealment are markers of moral personhood. The capacity to keep a secret is central to understanding one’s capacity to live a moral life (Shaw 2000). Techniques of concealment, moreover, are techniques of the self, in which the notion of the self is deeply entangled with one’s demonstrable ability to keep a secret. As Michael Jackson also notes in his work on local perceptions of the TRC, silence has value, and to talk too much is a form of excess too, one that risks doing violence to the very experiences it struggles to make sense of. This is why our language must be measured and tempered, rather than used to fill silences, or speak that which the sufferer cannot speak. And this is why we should learn the value of silence, seeing it not as a sign of indifference or resignation, but of respect. This is not shocked silence—­as when one is struck dumb by events that beggar belief or cannot be narrated—­but silence as a deliberate choice. For there are certain events and experiences of which we choose not to speak. Not because they hold us in thrall, freezing the tongue. Nor because we fear they might reveal our flaws or frailty. Still less because we feel our words can never do them justice. Silence is sometimes the only way we can honour the ineffability and privacy of certain experiences. (Jackson 2004, 56) While ideas about secrecy, concealment, and silence are central concerns in the anthropological studies of the Mano River region, there are some features that strike me as common to many cultural contexts. In this setting, where local notions of secrecy and concealment meet the secret of HIV, this resonance becomes clear. The problem of HIV as a secret to be concealed or hidden from view, or about which to remain silent, is a global phenomenon. Wherever HIV/AIDS programs exist, the “secret” of HIV is actively constituted through consistent reinforcement of HIV’s exceptional status. This global predicament is also interpreted within local moral notions of secrecy and concealment that are linked to gender and class. Singling out the virus as a particularly pernicious secret—­ which if left undisclosed wounds its host biologically, psychologically, and spiritually—­only serves to buttress its exceptional status. An individual’s introduction to the significance of disclosure—­a nd by extension, the idea of an HIV diagnosis as a condition potentially requiring

The Imperative to Talk  ·  73

concealment—­occurs from the point of diagnosis, making its first appearance after the post-­test counseling session. During these sessions, individuals also begin to speculate about potential routes of infection and to assess the potential benefits and pitfalls of disclosure.

The Post-­Test Counseling Session Because HIV program logics have deemed disclosure to be self-­evidently good and critical to an HIV-­positive identity, as Nafisatu’s story illustrates, counseling and testing program staff actively pursue information about their clients’ disclosure status during their meetings. As part of managing their client load, staff members record patients’ steps toward disclosure. For example, during the first session after a positive diagnosis, the patient is asked to make a plan for disclosure. The counselor asks, “To whom do you plan to disclose your status?” The response is recorded on a form, which stays in the patient’s file. Disclosure, as it is literally inscribed into a client’s file, is subject to recording, tracking, and management that is central to health program audit logics. While it was never made clear to me if patient forms were actually transferred to program databases—­although this was one of the plans for national monitoring and health information systems that I discussed with government officials—­these records represented the enrollment of patients into surveillance modalities by their disclosure status. When clinicians and patients revisited disclosure status during their monthly or quarterly checkups, the reappearance and circulation of disclosure accrued value, at least for the program of which the patient was a part. During follow-­up visits, a counselor might say to his or her client, “The last time you were here, you hadn’t told anyone about your illness. Do you plan to do so?” The counselor would then explain practical reasons to disclose, emphasizing HIV-­specific social support, including obtaining support for taking medications or help with acquiring nutritious food to accompany these medicines. Disclosure plays a specific role in a multilayered process of responsibilization, which includes—­but moves beyond—­“ helping people to help themselves.” Helping HIV-­positive people to help themselves by assisting others in supporting them is another one of these layers. One of the specific mechanisms of support outside of the clinic, aptly named the “support group,” helps newly diagnosed individuals develop strategies for leveraging disclosure to enlist support.

74   · The Imperative to Talk

Modeling Appropriate Modes of Disclosure During a meeting at the Community Health Program (CHP) in the late rainy season of 2007, staff and volunteers presented a two-­part series in which they acted out ways for disclosing one’s HIV status. The first skit featured a mother named Musu, who had just received an HIV diagnosis and was sobbing uncontrollably at the news. When Musu’s family asked why she was crying, she told them, “I found out I have AIDS!” Her sons and daughters abused her verbally, calling her a prostitute for having left their father and for being HIV-­positive. The children walked away from her, disgusted, astounded, and angry. Musu, visibly distressed, threatened to kill herself after witnessing her children’s negative reaction to her illness. A counselor later entered the room to inform Musu that if she took care of herself, she would not die immediately because of her disease. At first, the audience members watched in silence. Then they sucked their teeth at the lack of consideration exhibited by the family and the woman’s own strange public reaction to her illness. Another skit immediately followed. Staff member Hawa portrayed a mother who decided to disclose her HIV status to her family. During the skit, Hawa sat in a chair surrounded by volunteer outreach workers who portrayed her character’s children. For weeks, Hawa’s character had been gradually educating her children about HIV. She provided them with HIV-­oriented pamphlets, suggested that they listen to the local radio program on HIV (which was, incidentally, moderated by members of this and other support organizations in town), and initiated discussions about HIV with them. After recounting for the audience all the methods she used to educate her children about HIV, Hawa asked them, “What did you learn about HIV?” Her children responded to her question with the important facts about HIV: it is transmitted through blood, breast milk, and “mommy and daddy business [sexual intercourse],” and someone cannot contract the illness through casual contact. “It is just a sickness like any other sickness,” replied the son. “You can ‘cure’ yourself if you maintain yourself,” said the daughter. Then Hawa asked, “What if someone said a friend has HIV and is admitted to the hospital?” Her daughter responded positively, “You talk to them and never avoid them [because of their illness]. Go to the hospital and talk freely with them.”

The Imperative to Talk  ·  75

“There are drugs that keep the virus from killing the person immediately,” said the son. After the children told their mother what they had learned about HIV during the preceding months, Hawa finally revealed why she was telling them the story. About six months before, she had learned that she was HIV-­positive. Because the children had been faithfully reading the texts, listening to the HIV/AIDS radio programs, and engaging in their mother’s impromptu HIV discussions, they understood that the appropriate response to a family member with HIV is compassion and empathy. Besides, as the children noted, she is their mother, and she deserved their compassion more than anyone. They promised that they would support her; they would help her to remember her medicines and would make sure that she was eating properly—­all the things that HIV-­positive people must do in order to stay well. During facilitated discussion about the skits, members of the audience were quick to note that the skits modeled one inappropriate and one appropriate method for disclosing one’s HIV status. The audience knew that the first skit featuring Musu modeled inappropriate methods of disclosure, since it produced negative responses from the family members to whom she revealed her HIV status. But what, in particular, was inappropriate about her disclosure? Timing and comportment were both critical dimensions for examining Musu’s experience. First, the time lag between her receiving a diagnosis and her telling her family—­ though compressed for storytelling—­appeared to be too short. She had not planned appropriately for her revelation. The haste with which she revealed her HIV diagnosis, moreover, did not afford her the time to do the work of becoming HIV-­positive: to process, accept, and learn more about her HIV diagnosis. Second, Musu’s comportment was inappropriate. At the time, I assumed that the audience’s reaction (sucking teeth and shaking heads) was solely about the punishment the mother received from her children. But as I discussed the scenario with others familiar with role-­plays in Sierra Leone, I learned that, in absence of provocation, Musu’s utterance resembled ritual confession—­t he kind in which witches, adulterers, and other moral defaulters are ritually compelled to talk about their sins in public, often with grave consequences for the confessor (Shaw 2002; Turner 1967). Thus, the children’s reactions evoked classic notions of illness-­related stigma, in which Musu’s HIV was the result of both an

76  · The Imperative to Talk

ontological and moral deficit. In such an interpretation, Musu is deviant and blameworthy. She confesses like a witch, and her illness is a retribution for her misdeeds. Even in the most generous light, her outburst would be read as socially inappropriate and awkward. To have discussed a largely misunderstood disease (with so little tact) and to have threatened suicide without provocation was simply not good behavior for a mature adult with children. The wide gulf between the two groups of children’s responses to their mothers’ respective confessions drew attention to the peculiar character of and requirements for disclosure. Hawa’s skit showed that, when an HIV diagnosis is revealed slowly, and accompanied by facts and reassurances, it can provoke an empathic response. Conversely, Musu’s children abandoned her, because she sought care and compassion without setting the proper stage for it. She further compromised an already precarious disclosure scenario when she threatened suicide, indexing a kind of inner turmoil that far exceeded the psychological struggles portended by an HIV infection. Although the two skits are clearly intended to demonstrate the “right” and “wrong” ways to disclose (as well as the respective consequences of each scenario), the skits also reveal the crucial function that disclosure plays in responsibilizing HIV-­ positive individuals and consolidating their role as HIV educators, risk assessors, and risk managers. In both skits, the HIV-­positive person carries the burden for setting the stage, directing the act of disclosure, and anticipating and managing the reactions to it. A successful disclosure scenario features a well-­educated family and support network that embraces the loved one’s HIV identity and assists the HIV-­positive individual in managing a healthful life, suggesting that a primary reason to disclose is to receive social support from family and friends. Successful disclosure, moreover, hinges upon whether the “disclosed-­to” have internalized NGO-­determined appropriate messages delivered through NGO communication channels—­radio, newspapers, billboards, posters, and outreach. Regardless of the outcomes of their disclosure, the mothers in both skits are deemed responsible for raising consciousness about the social and scientific truths about HIV, presenting their illness to others, cultivating compassionate responses, and maximizing the capacity of others to provide them with HIV-­related care and support. In other words, they must learn to help others help them to help themselves.

The Imperative to Talk  ·  77

Gender Responsibilized The disclosure skits focused not only on appropriate methods of disclosure, but also on what makes good HIV-­positive mothers and wives. Musu, the mother in the first skit, was accused of committing adultery and abandoning her husband; her HIV diagnosis, by extension, was punishment for her sexual and moral misdeeds. She blurted out her HIV status in the same manner as one would confess to witchcraft, reinforcing a moral etiology of disease in which afflicted individuals fall ill because they have done something morally suspect. Both skits also questioned the integrity of familial obligations in the context of HIV disclosure. Would each group of children respond to their mother’s HIV status in terms that reflected their own moral sense of the proper treatment of mothers? That is, would they show compassion and care for the woman who has proved to be nurturing, even as she has revealed that she has a disease with the capacity to disfigure, debilitate, and kill its carriers? When Hawa gradually discloses her status, she is repaid with kindness for her considerations of others’ feelings and her simultaneous concern for her own well-­being. In the skit modeling an appropriate form of disclosure, motherly self-­sacrifice ran alongside motherly self-­preservation. But where are the fathers, husbands, boyfriends, and male lovers in these scenarios? What role should they play in real-­life deliberations about disclosure, if we are to take the skits as appropriate templates? Men were rarely the subjects of disclosure scenarios, but they were still subject to programmatic oversight and scrutiny. Men were often the subject of rumors, praise, or bad-­mouthing, and they were perceived to need more individualized counseling on the matter. Yet their willingness to disclose and the consequences of nondisclosure were still read through the bodies of their female partners. One morning, I attended a hospital-­based support association, which was sustained by membership dues and a small grant from a private individual donor. Irene, the regular facilitator and manager of the group, asked me to sit in on the meeting (“Don’t take any notes!”) while she led a peer education workshop on the other side of the hospital’s campus. She briefly told the lab technician—­whose lab was adjacent to the office waiting room—­to make sure that the support group members did not cause any trouble for me. On her way out the door, she gave me a stack of folded

78  · The Imperative to Talk

papers containing the members’ names on the outside and their CD4 counts inside. The group, consisting mostly of men who worked for the military or lived in the neighborhood surrounding the hospital, met in the office’s waiting room, which held ample seating for the approximately two dozen regularly attending members. As the meeting room filled, Turay, one of the members, closed the door and drew the curtains. To the annoyance of many of the meeting’s attendees, Turay’s actions had made the room unbearably stuffy and hot. Another meeting attendee, Abubakar, began to berate Turay and other nondisclosers for hiding their status and not speaking out about their illness. This line of discussion would again be taken up later in the meeting when Abubakar called out his fellow support group members for not having disclosed their status to their partners or the public. As the meeting began, I introduced myself. Despite my having been working in the office three times a week for over a month, several members asked me why I was attending the meeting. Turay, in particular, objected to my presence. He had seen me taking notes at a public event and assumed that I was a journalist who sought to reveal the identities of HIV-­ positive support group members. After the lab technician again explained my reason for attending the meeting, including the aims of my research, Turay settled down. (He would later become a colleague and ally, with whom I frequently chatted on the phone.) The meeting—­which lasted for nearly two hours—­consisted of bickering over how dues would be spent and members’ sharing their perceptions about whether the staff was caring sufficiently for their needs. By the end of the meeting, they had made a lengthy list of demands to be delivered to Irene. The group’s secretary, eyeglasses perched on the bridge of his nose, studiously documented this list in the minutes. Immediately after the meeting, I ventured to the peer education workshop to report the meeting’s outcomes to Irene. She responded with a smile, nodding and saying, “Well, I know them. I know them very well.” She apologized about Turay: “Don’t mind him! He’s so difficult!” During a late-­afternoon break from the workshop, I walked with Irene and some of the other meeting organizers to a local bar to discuss the progress they were making during the workshop. As we walked down the uneven, red clay road to the bar, Irene told the U.S. government liaison, Auntie Jay, about my report from the support group meeting, detailing my experience with

The Imperative to Talk  ·  79

Turay. Smiling conspiratorially, Auntie Jay joined in the laughter about Turay’s misbehavior and the list of demands that the soldiers had put together for the organization’s staff. Irene replied with some exasperation, “It is always demands.” Speaking generally about the men she counseled, she described how they continue to “impregnate their wives and girlfriends . . . and they don’t tell them about their status, so that is willful infection.” She recalled an earlier conversation with Turay, whose partner had recently suffered a miscarriage. Irene asserted—­first to Turay and now to us—­that the miscarriage was evidence that his partner had contracted HIV from him. This made Turay “guilty” of willful infection. Irene was certain that Turay had not disclosed his status to his partner. When she confronted him about whether he had considered that HIV had caused the miscarriage, he offered a more exculpatory explanation: his girlfriend had miscarried because of a serious episode of malaria. “What happened to the bed nets we distributed to you people?” “Well, she slept under the net. But we both know that there are times when the mosquito can bite, and the woman isn’t under the net.” Judging from the way the staff members talked during our meandering walk through the trees, they knew otherwise. Shaking their heads yet again, they settled on the veracity of their original speculation—­Turay’s girlfriend had contracted HIV from him, and she miscarried because he had willfully infected her. He chose not to disclose his status, and the domino effect of his nondisclosure was revealing itself in his girlfriend’s reproductive failures. A pregnancy was evidence not only that Turay had been having unprotected sex, but it also must have meant that his girlfriend did not know about his HIV status. Therefore, she did not have the chance to negotiate for condom use. As part of their clinical ethics, Irene and her counterparts at the hospital would not reveal his status, no matter how frustrated they were with his “willful infection” of his female partners. Besides, Turay had been explicit about what would happen to anyone who revealed his HIV status. Aping Turay, one of the staff members deepened her voice and mocked his frequently agitated affect: “I will shoot anyone who tells my woman that I have this disease!” Giggling about what they perceived to be the ridiculousness of Turay’s threat, the two women sobered when they returned to the issue of the miscarriage. He must have been having unprotected sex with her. “He got her pregnant. That’s evidence that he’s been having unprotected sex with

80  · The Imperative to Talk

her. And she did not even have a choice. That’s willful infection.” Thus, disclosure’s generative capacity is revealed even in instances of nondisclosure and concealment. Its speculative nature—­in which Irene and Auntie Jay could come to various conclusions about the nature of Turay’s relationship and his moral character—­is also revealed. When Turay refused to disclose his status, he limited the range of choices for his partner with regard to “safer sex.” When his nondisclosure becomes known to others—­others who learned about his status through their clinical relationship—­t hose “in the know” harbored ill will toward him. Further, the clinical ethics around disclosure, in which health professionals are compelled to not reveal their patients’ or clients’ HIV status, hyper-­responsibilizes the HIV-­positive individual, giving him the sole burden of disclosing his status and assuming the responsibility for others’ response to this information.

Disclosure as Love As a part of the series of skits about disclosure, Hawa opened a discussion about how disclosure provides the opportunity to negotiate condom use between sexual partners. A heated discussion about condoms—­and the multiple meanings assigned to them—­ensued. “Condoms cause arguments!” one woman shouted. “Men can be very stubborn about using condoms!” exclaimed another. “You will have to talk about HIV, but don’t disclose until you have a chance to talk more generally,” suggested another, who clearly agreed with the messages presented in the disclosure skits. Hawa replied, “If you like a man, you don’t want him to be sick. And it’s the same for women. Men, you don’t want your woman to be sick. It’s just not love if you infect the person.” Rather than summoning feelings of infidelity and distrust between partners, the condom—­when coupled with sincere discussion about one’s HIV serostatus—­can be a symbol of love, caring, commitment, and respect for an intimate partner (Bledsoe 1991; Tavory and Swidler 2009). Hawa imbued the condom with a potentially new meaning, as she also outlined new terms for practices of concealment and disclosure. Thus, in addition to providing an opportunity to demonstrate one’s desire to become a responsible citizen, disclosure also signals a careful consideration for intimate partners. This consideration is evidenced by the changing meanings of condom use and other informed, rational decision making about safer sex methods.

The Imperative to Talk  ·  81

In addition to being expressed in terms of love and respect for intimate partners, responsibilization finds expression in ethics of a juridico-­ legal kind. Siaka, the group’s other facilitator, reminded the support group members about the parliamentary bill that had advanced rights for people living with HIV, but also held them responsible for protecting others from the illness. Armed with a dangerous virus in their bodies, HIV-­positive people bore the responsibility to protect others. In this case, the goal for the confessor—­as I understood it—­was to disclose “with an eye to the social good.” The social good to which they are contributing is, first, to protect people from becoming infected (by them), and second, to cultivate an environment in which stigma no longer drives discrimination against people living with HIV/AIDS. By speaking frankly about their condition and by looking good, HIV-­positive people are seemingly disconnecting the image of the debilitating sickness from the (invisible) virus. More specifically, they are trying to establish HIV as a chronic illness. At the same time, many people who choose to disclose in public spaces pursue the intrinsic benefits of disclosure, including the potential for reparations and rewards. The TRC and other trauma recovery programs reinforce this political economy of suffering by imbuing narratives of suffering with economic value (Colvin 2004; Shaw 2007). Using people who look good and speak well as ambassadors for HIV-­ positive individuals can backfire. Those who recognize the force and money behind HIV programs—­through the proliferation of billboards, radio ads, parades, and rallies in Sierra Leone—­also recognize that people who reveal their HIV status have much to gain by doing so. In one of my focus group discussions with male college students, I learned that this idea might not be limited to people familiar with the AIDS industry in Freetown. One of the group members doubted HIV/AIDS existed. He told the group, “I have had a lot of unprotected sex and have been burned too. Those STIs, I know about. But I have never seen anyone with HIV. Have you? I think it’s something that they tell people to stop them from having sex. I think those people who say they have it are lying.” Two other focus group participants immediately disputed his claim. One said, “Have you seen the billboards? The radio ads? They wouldn’t be spending this much money on something that doesn’t exist. In other countries, it’s a big problem.” Others in the group nodded in agreement, suggesting that financial investment revealed the “true” seriousness and intrinsic value of HIV education efforts. This discussion also reflected the young men’s

82  · The Imperative to Talk

recognition that specific social and biological issues and the responses to them are commodified—­imbued with cultural, social, and economic value—­in public health practice and development programs. Anthropologists working elsewhere in West Africa have noted how audiences at HIV disclosure events often questioned the veracity of the claims of HIV-­positive spokespersons. In particular, HIV-­positive spokespeople are accused of falsifying their status to secure the economic benefits that accompany disclosure (Cassidy 2010; Nguyen 2002). Stories of falsification were also common within the Freetown support groups. During one meeting, Siaka announced a press conference, which was scheduled during a series of antistigma and antidiscrimination events, and he urged support group members to attend. He claimed that their attendance would dispel misperceptions about HIV-­positive individuals participating in these events: “People still expect you to be thin if you have HIV. They believe that when you look good, you’re showing up to these events for the money. You have to speak up and show them that that’s not the case,” he said. This perception is further colored by collective experiences with the use of narratives for economic and social gain in the TRC and other trauma recovery programs (Shaw 2007). These stories also remind us that, for every revelation, there is something that is concealed; for every utterance, there is something that is left unsaid. Events and circumstances occurring outside the clinic setting also affect how HIV disclosure is interpreted. These events and circumstances include: cultural and historical significance of concealment; initiatives that emphasize the significance of “talking through,” like truth and reconciliation commissions; special court testimonies; and NGO advocacy research. To partake in social interventions funded through international donors and administered by government and nongovernmental organizations often requires disclosure, usually to a support group leader or a bureaucrat of some kind. To disclose one’s HIV status within a group of fellow HIV sufferers may create bonds among HIV-­positive persons, thereby hardening the possibility of an HIV-­identity or personhood. Failure to acknowledge one’s HIV status, even in these circles, can be the grounds for exclusion from a series of events and benefits conferred through HIV support groups. Management of knowledge about one’s HIV status may have little to do with the disease itself and public perceptions; rather, it can provide the motivation for excluding the HIV-­negative from a pool of resources. This may happen in unexpected ways in the context of

The Imperative to Talk  ·  83

i­nterpersonal relationships, as in the story of Safiatu, who strategically concealed the source of her rice ration, as I narrated in chapter 2. It may also happen at the institutional level, where processes of inclusion and exclusion are mediated through HIV testing and emphasize biological notions of belonging.

Resisting Disclosure The greater the scope of the audience for an HIV-­positive individual’s disclosure story, the more praise and access to powerful social networks and resources she will receive—­first within the country, and then outward to other African countries and the West. Despite NGO and academic claims about the liberation and empowerment that disclosure produces, the pressure to disclose against one’s wishes can also be a burden that challenges modes of personhood that are rooted in discretion. I saw Nafisatu fairly frequently on my visits to the ASA office, and because of the gossip that surrounded her HIV status, I did not want to address the issue with her until I knew her better. After I did get to know her better, I requested an appointment for an interview, but she told me, “I have nothing to say. What would I talk to you about?” I am sure that part of her reluctance to talk was my position as an anthropologist studying HIV/ AIDS programs. Whatever she told me might find its way into written record. In addition, her right to disclose to whomever she wanted and at whatever time she chose was something she held dear. “Should HIV define me?” she seemed to ask during our conversations about others who walked into the office, seeking HIV services, social support, and general updates. Although she initially did not want to participate in an interview, Nafisatu supported my project in other ways. She recruited some of the ASA’s members for interviews and helped me to understand some of their concerns, as well as the challenges of working with the people who accessed program services to meet their everyday needs. Eventually, Nafisatu agreed to be interviewed, primarily by suggesting that she could provide insight into the organization and work of the ASA. During the interview, I asked her about her childhood, her education, and her family. Finally, after talking about her experiences during the war and how she came to work for the support association, I asked her point-­blank if she was HIV-­positive. I did so because I thought other people exaggerated her secrecy and also because, if she were HIV-­positive, I wanted to

84  · The Imperative to Talk

ask her about her experiences living with HIV. How could she reconcile working in an HIV/AIDS social services office and not disclosing her status to others? If she were HIV-­negative, what experiences—­if any—­ compelled her to work in this type of association? After I posed the question, she stared at me with wide eyes, saying nothing. Her silence precipitated my own, and I averted my glance from her face, first to my notebook, and then to the red light on the digital recorder that lay on the table between us. I retreated from this line of interrogation, lest I be guilty of what I had accused the others of doing: betraying Nafisatu’s desire to keep her HIV status private. Much was at stake if she were HIV-­negative. Would she be able to keep working in the same capacity? If she were positive, she would face the kind of scrutiny to which support group members were often subjected. Why did I need to know, and what would I do with this information when I had it? Why did I understand her nondisclosure and desire to work for an HIV/AIDS social services organization as a contradiction, or as a contentious way of being? It did not seem to be either for Nafisatu. I lowered my voice and said, “You don’t have to tell me whether you are HIV-­ positive or not. It’s a question I ask people because that’s what my research is about. But I also want to know what makes people test for HIV to begin with. Have you ever been tested?” “Yes,” she answered. “Why were you tested?” “Because I was sick. I was very ill.” Nafisatu later took a job at the organization because an acquaintance of hers left the job to study abroad and recommended her to the administrative officer. As part of her work duties, Nafisatu was trained to provide post-­test and general counseling to people who benefited from the organization’s services, which included school fees for children, food supply, and job skills training. As a trained secretary, she also typed letters, made copies, and ran errands. Nafisatu took advantage of the skills training courses that the ASA provided to its clientele, because, as she remarked, “You never know whether a job will be there. If you have skills, you can make small money.” At that point, Nafisatu diverted the conversation away from her life history to some of her frustrations with the “clients” and the day-­ to-­day management of the support association. But, as quickly as she changed the subject, she steered the conversation back to disclosure, the issue that had originally piqued my interest in her situation and the discussions surrounding it.

The Imperative to Talk  ·  85

Nafisatu said, “I heard that, in London, no one makes you disclose.” Not having studied HIV disclosure in London, I had no idea, but I imagined that this could be true, given my earlier work on HIV in the urban United States. I sensed that she wanted me to confirm that a double standard existed. These differences animate the contradictory ethical messages related to disclosure—­that certain people’s right to privacy, to confidential clinical information, should be respected, even if the public health benefits of disclosure were far-­ranging. Her statement also signaled the inconsistent operating logics of development programs that privilege the rich over the poor, that distinguish Africa from the West, that send contradictory messages about social responsibility and individual responsibility. These distinctions create uneven revelatory burdens. In other words, if someone wanted to keep her HIV status secret in London, she would not feel pressured to come out in public and declare her status—­not for the broader social good, or even for the purpose of reducing stigma. Although an HIV-­positive Londoner would likely face severe judgment—­perhaps even imprisonment—­ for “willfully infecting” an unsuspecting sexual partner, confidentiality is part of a moral discourse that informs clinical practice (“something that should be upheld for the benefit of the patient”). Confidentiality and the right to privacy also pervade everyday encounters in an increasingly liability-­and risk-­averse society (“should information about this person’s health get out, and it adversely affects her life, we could be blamed and even sued”). “Is it true?” Nafisatu asked. Hinting at her own situation—­in which there was not-­so-­subtle pressure to disclose her status—­she added, “Disclosure should be something one chooses to do or not do, rather than something one should be pressured to do.” As she became increasingly involved in program activities, she told me, she realized that it is difficult to disclose one’s status because “people think that HIV is a death sentence.” But wasn’t that one of the presumed functions of disclosure? To reassure people that HIV was now manageable with the appropriate clinical care and that there were numerous resources available for people who tested positive? One might see this as evidence that more education about HIV and available treatment is needed. Certainly, providing information to HIV-­positive people about the disease and its management is a good thing. But Nafisatu’s question alerts us to a perceived injustice; the burden of professing one’s HIV status was unevenly distributed. Not everyone’s HIV status was expected to serve the public good. The “Londoners” to whom

86  · The Imperative to Talk

she referred were not only expected to want to keep their HIV status private, but their presumed desire to do so was also respected, even buttressed, by legal and bioethical mandates and expertise. HIV-­positive Sierra Leoneans, in contrast, were expected to disclose their HIV status and educate the public—­often in violation of clinical ethics that esteem the right to privacy and local norms that foreground protecting intimate knowledge. These institutions appeared to value certain people’s right to privacy while blatantly disregarding others’ desire to do the same. It seemed to me that another set of contradictory assumptions were at the root of the problem: programmatic focus on the communal, nonindividual-­centered nature of African communities has essentially made ethical lapses regarding privacy a foregone conclusion; at the same time, disclosure in African contexts is also viewed by the same NGOs as potentially exceptionally dangerous.4 As Nafisatu suggests in her account, the rewards for disclosing one’s HIV status are not simply psychological, but material, economic, professional, and social. HIV programs primarily generate these benefits, which means that they, too, have a role in shaping disclosure practices. Yet, Nafisatu’s story indicates that individual considerations may also be important to HIV-­positive Africans. As I have already discussed, making oneself intelligible to the HIV/AIDS apparatus (e.g., through disclosure and presence at meetings) confers a variety of tangible benefits. Nafisatu’s salaried post was due to her friend’s successfully leveraging her HIV status to pursue further HIV/AIDS-­related education in the United Kingdom. Nafisatu’s position in the organization had allowed her to enroll in special skills training courses free of charge, and it also gave her access to the people and places that could broaden and strengthen her social networks. Although she had expressed misgivings about disclosure, Nafisatu told me that describing one’s experiences with HIV/AIDS was important for debunking common myths and misunderstandings about the disease. Our conversation about this issue ultimately revealed her ambivalence about the profound stakes of disclosure. More broadly, it reflected the ambivalent and recursive relationship between disclosure as therapeutic and confidentiality as an a priori therapeutic standard. To admit to being HIV-­positive opened up one’s personal conduct to speculation and discussion within the public realm (or at least within the public to which one’s HIV status has been revealed). Yet, experiential knowledge arising from earlier activism around HIV suggested that

The Imperative to Talk  ·  87

“giving voice” to the epidemic would improve social conditions for HIV-­ positive people, reduce feelings of alienation for the afflicted, and buffer against discrimination by those who have (supposedly) not been infected with the virus. Disclosure has functioned to reinforce and legitimate the claim that HIV is exceptional, while it has also responsibilized those who choose to disclose their status—­as well as those who choose not to. Disclosure may well have promoted catharsis, redemption, and intimacy for some people living with HIV. But, like the quest for visibility (of HIV-­positive people and the evidence of progress toward HIV program goals described in chapter 4), disclosure has also produced rifts and formed the basis for distinction and hierarchy within the groups supporting HIV-­positive people. Many of these rifts are caused by the incentives given to individuals who willingly confess their condition to a broad range of audiences. This is not to say that responsibilization is optimized through full disclosure. Although communicated inconsistently, particularly through the scholarly and public health quest among HIV-­positive people for “reasons not to disclose” and constant encouragement to disclose, the most responsibilized way to act as an HIV-­positive individual is by selectively disclosing one’s status. This is because selective disclosure demonstrates that one has learned about his illness and has acknowledged and assumed the public health, social, and cultural risks of disclosing. James, for example, openly discussed his HIV status with his family and a few friends. “I am always talking on the radio and television about my status. But I don’t tell some people because they would just want to spread the news far and wide with malicious intent. I want people to know but to not think about it like it’s a scandal.” Ultimately, he told me, casual friends do not need to know, only intimate ones do: Well, really, my reason for not telling some people really is that I still feel some people . . . like the idea of spreading the news wide. I would like people to know about it, but not in the scandalous way that people might look at it. I feel more confident with people who are close to me. For people who are casual friends, I don’t think it’s necessary to tell them. I tell my intimate friends, really. By not disclosing to some, fully responsibilized individuals have simultaneously protected themselves from retribution and rejection and

88  · The Imperative to Talk

chosen to relieve others from the burden of their HIV disease. In the situations where they learn to manage disclosure narratives—­content, audience, and audience response—­HIV-­positive people must actively negotiate their revelation with the knowledge that they will always be judged by the fact that they, seemingly unprovoked, revealed information about themselves. In these scenarios, the responsibilities for managing others’ responses to the illness, for protecting others from infection, and for transferring caregiving responsibilities to others are all carried by the HIV-­positive person. In this chapter, I have described how a moral discourse surrounding disclosure—­defined as a dual preoccupation with disclosure as catharsis, redemption, and self-­love, and with secrecy as guilt, shame, and fear—­is crucial to understanding how disclosure functions in HIV programs. This dual preoccupation operates alongside a moral logic of responsibilization, which, in this context, refers to a process by which individuals learn and inform others about their biomedical condition, assume risks associated with the condition, and become prudent and rational citizens to avoid burdening others. Bureaucratic and therapeutic practice in clinical care, as well as adult education techniques like skits, role-­play, and facilitated discussions on the topic of disclosure, enable and guide this process of responsibilization. Specifically, in clinical encounters and support groups, HIV-­positive individuals learn why they should disclose, the appropriate ways to do so, and the best ways to manage outcomes of disclosure. While responsibilization is actively pursued and even embraced by HIV-­positive people through idioms of love, protection, and commitment, it also poses existential, juridical, and interpersonal predicaments for many of them. How do they manage knowledge about themselves in a cultural milieu where concealment and silence can be moral markers, post-­conflict programmatic imperatives to talk prevail, and economic advancement through disclosure is a promising possibility? Responsibilization through disclosure—­although posed as a virtue and readily embraced—­has its limits. It overemphasizes the individualized and disease-­centered nature of risk calculations, foreclosing critical reevaluation of the cathartic role of HIV disclosure and the shame of secrets. Such inattention to the multiple and overlapping loci, interpretations, and layers of risk, disclosure, and secrecy obscures the role that HIV programs play in actively shaping the risks, burdens, and opportunities presented by disclosure.

4

Positive Living Hierarchies of Visibility, Vulnerability, and Self-­Reliance

In early 2007, I drove into the center of town from the West End, to attend an AIDS Support Association (ASA) group meeting at their new office. When I arrived, I found a set of red metal doors that had been left ajar, revealing a dark, cool entryway leading to a set of stairs. As I climbed the stairs, a sliver of light from a single window at the top of the stairs revealed the contours of a wooden table and bench. No signs of the meeting. To the right of the window was a door leading to a computer school—­ one of many in central Freetown—­which taught Microsoft Word and Excel to students fortunate enough to have scraped together money for the tuition. Although the door to the school was open, a locked metal gate barred the entryway. To the window’s left was a door leading into the ASA office. It was a little after four o’clock, the time for the regularly scheduled support group meeting. Alfred, the head of the organization, was sitting in the stairwell landing of the organization’s new office. A former pharmacist’s practice, the office was fitted with a plywood reception desk and hand-­painted signs welcoming patients and outlining payment options. The ASA had vacated their former office—­an old board house only a block away—­for security reasons. Someone had broken in and stolen their computer and generator. Alfred had one of the staff members take me on a tour of the new office, where I briefly surveyed the empty rooms and scattered barrels of office materials, a reminder of all the things that needed to be done before business as usual could begin again. Later, as we sat together at the doorway, Alfred commiserated with one of the meeting’s guests and some of his colleagues about the lack of commitment and self-­reliance exhibited by the support group members. As he talked, I glanced at the clock and noticed that we had been waiting for more than twenty minutes. “Not only do the members not come on 89

90  ·  Positive Living

time,” Alfred noted, “but when they do come, they come with demands.” If they did manage to arrive at the meetings on time, he continued, it was because food or other goods were being distributed. Referring to his ability to cope with personal difficulties—­his housing situation was in limbo, his teenage daughter was in the custody of her irresponsible mother and was possibly sexually active, and he had trouble managing his blood sugar—­he wondered aloud, “Why can’t they be more like me?” In this chapter, I explore what it means to ask why support group members are not “more like” Alfred, why their actions and comportment as HIV-­positive people don’t closely resemble his. I address how visibility, as a social field, and visuality, as a set of social practices and orientations, mediated judging relationships among the HIV-­positive individuals with whom I interacted. Support group leaders and program managers—­many of whom are also HIV-­positive, like Alfred—­pursued and fashioned identities that distinguished them from other members. They were role models, which placed them in the upper echelons of a hierarchy of positivity. How an HIV-­positive individual was situated within this hierarchy depended on how well she was judged to have complied with institutional and interpersonal demands to live positively. The requirements of positive living included exhibiting self-­reliance; espousing healthful dietary, psychological, and physical regimens; and eagerly engaging in learning opportunities afforded through HIV workshops and state-­sponsored activities. These distinctions—­distances, even—­between HIV-­positive individuals and the hierarchies established among them materialized in everyday encounters with HIV institutional requirements.

Greater Involvement of People with AIDS: The Pyramid In 1999, UNAIDS outlined a new strategy for “greater involvement of people with AIDS” (GIPA). The call to involve more HIV-­positive people in the response to HIV/AIDS arose from observations and assumptions that programs are more effective if people affected by the issue driving the program are involved. But how is “involvement” defined? How do we know when someone is adequately or appropriately ‘involved’? A diagram (Figure 2) created by UNAIDS in the late 1990s provides a framework that elaborates the range and level of involvement and what each level entails. While the text’s authors openly challenge any attempts to oversimplify the question of involvement, and probably recognize that a diagram—­

Positive Living  ·  91

Figure 2. Greater Involvement of People Living with AIDS pyramid, UNAIDS.

like any pictorial representation—­might oversimplify an on-­t he-­ground reality of involvement, the model became a method of assessing an organization’s compliance with GIPA ideals (Maxwell et al. 2008). Rather than heeding the warning that invisibility does not equal noninvolvement (and therefore that disclosure and appearances at special events were not required for participation), this model, and its subsequent circulation and deployment, hardened into something quite different than intended. Pyramid diagrams, at their most basic level, depict a hierarchy of interrelated concepts; this hierarchical relationship is also expressed in terms of relational quantities. As we move up the pyramid, there are

92  ·  Positive Living

increasingly fewer of the entity in question. Thus, in this diagram, HIV-­ positive people are placed in a hierarchy on the basis of their involvement in institutional responses to HIV/AIDS; the target audience of passive recipients for HIV programs is very large, while the number of experts and decision makers is relatively small. Expertise is “above” (perhaps, better than) implementation, speaking above contributing. Likewise, a tree diagram, created some years later by an NGO working primarily with HIV-­positive women, suggests that only “original ideas” are “fruitful” and that one must pass from being told what to do, to various levels of involvement before realizing the fruits of one’s labor. In other words, there are rites of passage, acts that one must perform, roles one must play before one is recognized as productive and useful to HIV programs (http://www.icw.org/icw/files/icw_poster.jpg). While some people might argue that the pyramid (and the tree, for that matter) fails to reflect a reality that is often fluid, situational, and context-­ specific (e.g., that members of target audiences may also be spokespersons, or that a single person may inhabit all of these boxes at once or at various times throughout his or her life), I argue that this pyramid reflects a range of options for involvement that prioritizes and ranks them, assigns them value, and makes higher value equivalent with scarcity and uniqueness. A careful analysis of how these levels of involvement are interpreted, and gain traction in HIV programs themselves, shows how this depiction—­and ones like it—­reflect a predicament related to how to meet the competing demands of programmatic virtues of participation, scalability, and responsibilization and of an ethos of HIV exceptionalism, which suggests that HIV-­positive people should foreground HIV in their experiences and behave in relation to an illness identity. This is especially true when it comes to public disclosure and appearances at events. In many ways, the limits experienced by HIV-­positives seeking assistance result, in part, from competing messages that ask that they aspire to these upper levels of the hierarchy when, in fact, these spots are limited, reserved for the exceptional few capable of managing the multiple demands placed upon HIV-­positive people involved in these programs. It is unlikely that these effects were intentional. The original report, for example, states: “Although there should be nothing to stop People with HIV AIDS (PWHAs) being open about their serostatus to their colleagues and their community, PWHAs also have the right to choose to be

Positive Living  ·  93

involved without making their serostatus public. In other words, GIPA cannot be reduced to ‘no visibility = no involvement’” (Van Roey 1999). Yet, GIPA often is. Compliance with institutional entreaties to live positively foreground visuality and the distance between keen adopters of positive living ideals and “everyone else.” Positive living introduces dialectics between looking good and looking well, between being seen and inviting onlookers, and between appearing vulnerable and exhibiting self-­reliance. Similar to the concept of “disclosure,” the political and normative dimensions of the visible correspond “to connection between the possible and the proper, between what can be seen and what should or should not be seen, between who can and who cannot see others” (Brighenti 2008, 98). The concept of visibility requires an examination of the multiple registers in which the gaze and spectatorship ­come to articulate specific kinds of social relations among HIV-­positive people.

More Like Me: Modeling Positive Living What did it mean to be like Alfred, who was struggling himself with the sundries of daily life? He often told me about his troubles with his moody, teenage daughter; a messy divorce proceeding; grossly inflated housing costs (as a result of the war and massive influx of NGOs in his preferred neighborhoods); the rising price of nutritious foods; and exorbitant fuel costs that made public transportation expensive. His electronics business and support association job—­a long with remittances from family living abroad—­helped to absorb some of the financial and social shocks he experienced regularly. Most people at the free HIV clinics and support group meetings worked as traders selling soft drinks, tinned fish, tomato paste, processed cheese, cigarettes, and hard candies out of their homes or at makeshift roadside stalls. A handful of members had salaried positions as cooks or cleaners in wealthier families’ homes. What separated Alfred from the others—­at least by his account—­is that he had managed to cope with the numerous stressors that all Freetonians living with HIV faced. Why couldn’t others do the same? Why couldn’t they follow his example? When Alfred insisted that others be more like him, he demanded that they witness, observe, and emulate the positive life he was leading. He wanted to serve and be recognized as a role model. “Modeling” is almost

94  ·  Positive Living

always linked to fields of visibility, in which the role model is “before everybody’s eyes . . . [and] tends to be defined in moral terms . . . [as he] inspires behavior and attitude . . . [as] an example to follow” (Brighenti 2007, 334). Such “modeling” pursuits—­at least as described by Alfred—­ are inherently asymmetrical. The role model not only lays bare and demonstrates inspired behaviors and attitudes but also bears witness to and evaluates others’ espousal of these same behaviors and attitudes. When clients do not show up to meetings on time or fail to make an appearance at a workshop, parade, or press conference, or they “appear” (not) to be doing well, these behaviors reflect (on) programs, patient-­leaders, and the individual who is under intense scrutiny. The concept of “positive living”—­or “living positively with HIV”—­ emerged in an attempt to transform negative representations of the disease into a more empowered approach to living with (as opposed to dying from) HIV/AIDS. Although subject to varied interpretations and shifting meanings, definitions of what it means to live positively have consistently referred to hope, empowerment, support, and being informed about one’s illness. When a newly diagnosed client would attend his post-­test meeting, a counselor would usually emphasize the benefits of belonging to a support group and explain the types of resources that he could receive through membership. While regular one-­on-­one meetings only touched on issues of positive living, the support groups addressed this concept more explicitly. The groups also served to inculcate a sense of belonging among HIV-­ positive members and to instantiate ranking of HIV-­positive people and their experiences. Particularly during meetings and other official encounters, support group leaders emphasized the importance of embracing a “positive lifestyle”—­“ being more like me,” to echo Alfred—­in which an individual discloses her status, refuses drugs and alcohol, practices safer sex, embraces a positive outlook, and eagerly participates in HIV activism and patient education. Aside from being a space for supportive discussion and therapeutic camaraderie, the support group meetings also provided many poor HIV-­positive men and women with an opportunity to leverage their HIV status to obtain resources that would not otherwise be available to them. Attendance at ASA meetings and occasional drop-­ins at the office gave members access to information about upcoming workshops, regulations for obtaining food rations, and opportunities for generating additional income.

Positive Living  ·  95

Statements like Alfred’s—­ “Why can’t they be more like me?”—­ demonstrate how positive living discourses articulate standards by which patient-­leaders esteem, judge, and value their peers, particularly in relation to themselves. “Higher-­ranked” HIV-­positive individuals like Alfred emphasize how they manage to thrive with HIV despite facing hardships. These “success stories” buttress claims that any HIV-­positive person—­ whatever his origins and present living conditions—­can anticipate and overcome the potential social, physical, and psychological challenges of HIV through hard work, positive thinking, and perseverance. Poor HIV-­ positive people attend support group meetings, workshops, and other high-­profile events so that their suffering will be recognized by HIV-­ oriented organizations, a topic upon which I will elaborate later in this chapter. Somewhat paradoxically, to rise within the ranks of the HIV-­positive hierarchy, individuals must at least appear to espouse the “positive living” ideals when they make their appearance at these events. Visibility is equated with properly timed presence: arriving punctually, showing up at public events about HIV/AIDS, and looking good all count toward how one is visibly positioned in relation to others. In many ways, HIV programs—­a lthough fragmented in their approaches and their ability (or even their willingness) to alter fundamental social conditions—­draw their legitimacy from their ability to institute a scopic regime, or “an ensemble of practices that establish the truth claims, typicality, and credibility of visual acts and objects and politically correct modes of seeing” (Feldman 1997, 31). This is not to say that some members do not look askance (fit yay) at their model leaders or actively reject these ideals and the hierarchies that they (re)produce. Because members reported that they felt “infantilized”—­ as I will discuss in detail later—­a nd because of the relatively high levels of attendance and punctuality at other groups, I read support group members’ refusal to come on time—­and their failure to live up to Alfred’s expectations—­as acts of defiance. Such defiance was not often expressed out in the open. Refusing program agendas too outwardly—­too visibly—­ could affect one’s access to the benefits that are part of these groups. Suffice it to say that, even if they failed to show themselves on time, they still appeared; and if they appeared despite looking unwell, they were demonstrating their desire to be helped.

96  ·  Positive Living

More Like Me: Visibility as a Social Process The following stories highlight the role of visibility as a social process. At a meeting for HIV-­positive soldiers, Turay draws the curtains to the room, blocking out prying eyes. He is scolded by another support group member, who asks him how he could ever “live positively” if he doesn’t acknowledge or embrace his illness. Across town, a parade to rally opposition to HIV/AIDS stigma converges in the city center from the east and west ends of town, ensuring that residents along the main thoroughfares hear and see its message. At a press conference against stigma for HIV-­ positive people, a group of soldiers question whether I am HIV-­positive because they have not seen my test. A quick scan of the entryway walls of the ASA office reveals portraits of HIV-­positive people giving testimony about their illness. A woman at a support group meeting brags that no one knows she’s HIV-­positive because she looks so beautiful. These fleeting moments from my time in Sierra Leone point to the role that (in)visibility plays in socializing HIV-­positive people and others involved in HIV programs. Enormous demands are placed on HIV-­positive individuals to navigate a paradoxical and circular process of “surfacing” one’s HIV status through testing, disclosure, and appearing “well” and in the appropriate places. They must also embody programmatic virtues like responsibilization and accountability that emphasize both self-­assessments against moving benchmarks of “living positively” and visible evidence of progress toward program goals. At each moment, the techniques, interpretations, and effectiveness of (in)visibility are mediated through social class, privilege, and various articulations of need. In the sections that follow, I highlight the multiple ways that the visual—­through dilemmas and labors of vision and manipulations of visibility—­organize how individuals interpret and respond to HIV programs.

Surfacing HIV through Testing During a public HIV testimonial, an older man addressed an audience of HIV-­positive people and their guests, urging them to be tested for HIV to alleviate anxiety and stress: “If you don’t know your status, I’m sorry for you, oh!” To be considered HIV-­positive, one must receive an HIV diagnosis, which usually requires having one’s blood subjected to an antibody

Positive Living  ·  97

or antigen test. Yet, like James, the HIV activist discussed in previous chapters, who learned that he had HIV after repeatedly falling ill from malaria and typhoid, most of the people I interviewed learned of their HIV infection when they became sick and treatment failed. Thus, often appearing unwell, coupled with inexplicable, observed changes in bodily fluids—­ James’s bright yellow urine, or uncommonly high parasite loads—­are less specific visible markers of an HIV infection. For the individual who has no symptoms or visible signs of illness, an HIV test is the only means by which the disease is made visible, as the living virus is impenetrable to sight (Brighenti 2007, 327). Thus the task of the HIV test and of HIV disclosure—­in the case where a test is not available for public display—­is to bring HIV to the surface. Once one has received a diagnosis, the confirmatory results—­written on paper (even if kept in a private file) and presented as evidence of one’s status—­are drawn into circulation as evidence that one belongs to a growing rank of HIV-­positive people. Once an individual has disclosed his status, additional evidence circulates—­but with considerably less certainty, specificity, and verifiability.

Imaging Rituals, Ritual Images How does someone know if an HIV program is proceeding as planned? And how does someone determine if the goals of a specific HIV program are being met? Reports written for donors, government, and the public relations literature are collated from numerous data sources—­interviews, regular monitoring reports, program ledgers, and personal accounts. These are the institutional artifacts that operate as visible evidence of program progress. Often, the people responsible for distributing funds and overseeing program progress want to see for themselves—­with their own eyes—­how programs operate. These “snapshots” of program operations, outputs, and effects, culled from site visits, allow for verification of what has been written and for assurance that money is being spent well. These reports and program-­sponsored site visits act as an optical prosthesis, overseeing and addressing the concerns of audit cultures—­ efficiency, effectiveness, relevance, and accountability—­t hat characterize development work. During a meeting of peer health educators, for example, one of the managers of the military’s health outreach efforts reminded her audience

98  ·  Positive Living

Figure 3. Photographic evidence of program activities. Photograph by author.

that they needed to submit photographs of all of their outreach activities. “How will we know that you are doing what you say you’re doing? You must put pictures in your reports, people!” Similarly, when I visited the support group offices in town, I often noticed photographs of program activities, many captioned by location, date, and event (e.g., “HIV sensitization,” “positive living workshop”). These pictures (Figure 3) were prominently placed—­often near the entryway or on a centrally located bulletin board—­demonstrating that work was being done.

Seeking Recognition Parades—­or marches past, as they were called in Sierra Leone—­were often used to raise awareness and rally support around an issue. For example, political rallies often took the form of a parade, as did activism against sexual and gender-­based violence and in support of childhood immunizations. Parades were chosen for the visibility they would bring to a cause. Marching routes through densely populated areas, proudly displayed signs, and live or recorded music all registered the message in question both audibly and visually. What benefits, however, beyond “being seen” do such events confer? I remember talking to a friend who had worked for development agencies in Sierra Leone about a march past that I was planning to attend. “March past, yeah?” she remarked. “Of all the activities we

Positive Living  ·  99

fund to raise awareness of an issue, I really think the march past is probably the most useless, the biggest waste of money.” Yet, while they might not always meet the goals of shifting attitudes or deepening awareness, it seemed to me that these marches past certainly heightened the audience’s sensibilities—­however briefly—­of the political actors on display and the issues that mattered to them. The march past, with its ostentatious display of logo-­donning bodies moving, marching, and dancing to catchy tunes, focused eyes and ears on an agenda created by international NGOs, the national government, and donor agencies. This is not to say that the marchers did not write their own scripts or collaborate in performance and authorship, but these acts were often based upon a well-­known template. The march past lays bare the concerns of its architects and the machinations (many unconscious or taken for granted) that lend legitimacy to an event for raising awareness. This public spectacle helps to determine whose messages matter and demarcates the “appropriate” techniques for establishing claims as true, significant, and important. I describe one such event below, highlighting the gestures, objects, forms, and sounds that make up the march past performance and “penetrate the life world by intimate touch of sight” (Linke 2006, 212). At the end of the rainy season in 2007, the newly minted network of HIV-­positive people staged a parade in which two groups marched from the east and west ends of Freetown to converge in the city center at Victoria Park. Because I lived on the West End of town, I joined its group at the Youyi Building, the location for many of the national government offices. As a large crowd gathered, support group members and staff of various HIV and health organizations corralled us to a side street to explain the parade route. Drivers of Toyota trucks and jeeps, displaying logos from a World Bank−funded HIV/AIDS initiative, NGOs, and the National AIDS Secretariat, unloaded T-­shirts emblazoned with key program messages—­ “Do not stigmatize people living with HIV/AIDS” and “Show love and compassion to people living with HIV/AIDS”—­and the logos of the four sponsoring agencies, listed, I presumed, in order of their contribution to organizing the parade. After slipping one of the parade T-­shirts over my head, I accepted a hat advertising the brand of condoms that the U.S. government had donated as part of a multinational social marketing program it developed in the late 1990s. Professionally painted banners were distributed to volunteers, who held them close to their chests, taut, so that they could be seen (Figure 4). The banners read:

100  ·  Positive Living

The network of HIV-­positives (NETHIPS) in collaboration with National AIDS Secretariat, network of African people living with HIV (NAP+/West Africa) and AWARE Mass HIV/AIDS ­sensitization campaign Theme: Fight Stigma and Discrimination against people living with HIV in Sierra Leone, Venue: Victoria Park F/Town, Date: 6 October, 2007 The all-­male marching band stood at the margins of the group, wearing faded purple marching outfits, some with little burn holes on the sleeves; hats; and white pants. When they were given the signal to start, the bass and snare drummers played a cadence, and the brass players flared the bells of their horns in unison. Marching in time, and shaking their hips, the marchers began to walk down the street running alongside the Youyi Building. When we reached the one-­way street that leads to a roundabout that would take us into town, we began to attract onlookers; people stepped onto their porches or out of their homes to watch us pass. Some children and adults danced, and others craned their necks to read the banner. Once we reached the crowded roundabout, we continued to Sanders Street, a main thoroughfare leading into the heart of Freetown. As we marched down this thoroughfare, men sitting on stools at the edge of the road watched us. One asked, “Will you give me a T-­shirt if I join you?” A man in a cone hat and an HIV/AIDS prevention T-­shirt, known as Condom Man, carried a megaphone and barked prevention messages at the onlookers. Condom Man walked in front and distributed Gold Circle brand condoms to men and women inside the shops lining the boulevard. The foil covering the U.S. government−issued condoms glimmered in the light as they fell through many of the hands reaching out for them. By the time the processional reached the spots where Condom Man had passed, people were dancing with condoms in their hands. Small children followed alongside us, marching on the side of the road and dancing to the beat of the drum. Scads of town residents watched us from the first, second, and third floors of the homes and businesses lining the streets. As we passed one business on Siaka Stevens Street, the last street on the way to our destination, four gray-­haired men with wrinkled, sun-­weathered skin were struggling over an abandoned Gold Circle con-

Positive Living  ·  101

Figure 4. Antistigma and discrimination march, Freetown 2007. Photograph by author.

dom box. As the men tugged at the sides of the box, streams of condoms went flying, and the men dove to the ground to retrieve the scattered commodities. Finally, we reached the Cotton Tree, which serves as the central focal point for Freetown. There, Fina, a core support group member who spoke openly about how she became infected with HIV, and another woman carrying the front banner turned it toward the right and up the hill toward the building where parliamentary meetings took place. Turning back to me, Fina smiled, her teeth gleaming in the sunlight, and exclaimed, “Let the president see the banner!” As we turned left at the roundabout and continued down Siaka Stevens Street, we passed the judiciary, where people waved to us from their balconies. We finally turned up Gloucester Street to enter the front gates of Victoria Park. The marching band blasted a local hit and began marching. A few of the marchers commented on how the band was playing “fine music,” and shook their hips as they continued down the street (Figure 4). In addition to gaining recognition for HIV/AIDS stigma and discrimination, at least for that moment, Fina’s insistence that they raise their banner for the president suggests yet another way that people sought to make themselves visible, manipulating the kinds of images that can be seen and for whom.

102  ·  Positive Living

The Power of Invisibility For many of Sierra Leone’s HIV-­positive people, however, being legible or coherent to the AIDS industry is not the goal. A high proportion of Sierra Leone’s HIV-­positive population has a tertiary-­level education, which suggests that the country’s elite—­as in earlier stages of epidemics elsewhere in Africa—­is disproportionately affected. Although this trend appears to be changing throughout Africa (Gillespie et al. 2007a), it raises interesting questions about the ways that social vulnerability as a risk factor has superseded epidemiological realities. As I learned from nurses who work in Connaught Hospital’s AIDS treatment center, many of Freetown’s “high-­profile clients”—­HIV-­positive people with money and powerful connections—­rarely visited the well-­stocked public hospital. Even fewer attended support group meetings. The very few who did (only one or two in the organizations I visited) attended because they wanted to build relationships with other HIV-­positive people and learn more about their illness. Thus, the biopolitical embrace has a limited reach, and these limits are amplified through class distinctions. The high-­profile HIV/AIDS clients are not subject to the multiple levels of surveillance and audit logics that HIV/AIDS programs often entail. Poor HIV-­positive individuals have the added burden of performing their vulnerability, while wealthier clients more closely manage their visibility and the level of scrutiny to which they are exposed. A former counselor told me that when he encouraged some of his wealthier clients to attend support groups, they often refused, highlighting the differences they perceived between themselves and the people who belonged to the groups: “What would we talk about? What do we have in common [with the poor people who attend the meetings]?” In the cases of high-­profiles clients, then, the idea was not to be visible or intelligible, but to remain invisible, or at least illegible, to the HIV care and support regimes. By seeing private, expensive specialists in the downtown area, they were assured of their privacy. Moreover, they are able to disentangle their biomedical condition from the knotty, bureaucratic complexity of vulnerability and poverty. In other words, by refusing to take on illness identity, they also managed to evade an “impoverished” or “vulnerable” identity that these programs presume and often produce.

Positive Living  ·  103

Imagining the Scale of Care As I waited outside with Alfred and the staff for the support group members to arrive, individuals began to gather on wooden benches outside the office entrance. By five o’clock, we had all migrated to one of the rooms in the office suite to start the meeting. Eight association members were present. Two other visitors—­a middle-­aged male representative from a religious organization, and a female nutritionist and researcher from a local university—­attended the meeting, hoping that they could involve support group members in their projects. After the guests introduced themselves and their potential HIV projects to the group, Alfred officially opened the meeting, “I am sad to see so few faces. The date is set for the first Monday of the month. We didn’t meet during World AIDS Day events and in January because of the holidays, but I expected that people would remember the date,” he said. Meeting attendees responded with silence. Looking to his agenda for the next topic, he asked the group members if they knew what the letters in the acronym of the organization stood for. The members were silent again, so he prompted them: “First, what does it do? What do the letters stand for?” The members shifted uncomfortably in their chairs and on the makeshift countertop seating in the back of the room. Some answered, a few with their hands tentatively raised: “a center for sharing experiences,” “a place for meeting with each other . . .” Nodding in approval, Alfred chose words from the organization’s mission and asked, “Care. What does that mean? Is it only sick people who are cared for?” “No!” a couple of the members shouted. “ASA is a kombra [nursing mother] to its members,” Alfred explained. By using kombra to describe the organization, he explained that the organization provides nurturing that is not only physical, but also social and emotional.1 Extending the parenting metaphor, Alfred tells a story about parents who have four children. Two of the children are very well behaved, while the other two are a constant source of problems for the parents. “When sababu time comes,” he asks the group, “and the parents have to choose which children to take with them to America, who should they take?” A couple of the members replied, “The ones that are good.” “Exactly. Global Fund, who has been providing funds to help the group,” he said, “will see people not doing well from the resources that they provide, and then they will leave.”2 Hinting at his own sacrifices for the sake

104  ·  Positive Living

of people living with HIV/AIDS, Alfred told the ASA members that because the government provided free antiretroviral drugs, he had no real reason to belong to the organization. But he was “called to do work to help . . . a lot of work.” A deeply religious man, who suggested that this “calling” to work in the HIV/AIDS industry came from God, he encouraged the members to behave responsibly, stating that donors would continue to provide funding as long as they appropriately and effectively used program resources: “God is praised through our good use of things given to us.” Not for the first time, Alfred reminded ASA members that he had been diagnosed with HIV-­1 and HIV-­2 and diabetes. But, he said, what he “learned at the workshops conducted by various groups gave [him] hope and courage about [his] illness. This is not a bambot [prostitute] disease.” He urged the members to “live positively” because it “leads to long life.” Ultimately, when ASA members “live positively,” they look good, which is to say that they look well. And this reflects well on ASA as an organization of HIV-­positive persons. Alfred added that if they followed the guidelines set out by the experts who spoke at workshops, association members would be able to “show off” how good they looked, thereby countering common understandings of what it means to look—­and therefore be—­ HIV-­positive. He returned to the story about the good children and the promised trip to America: “The ones that try hard are the ones that we take.” Closing this item on the agenda, he warned, “Do not waste mother’s and father’s resources.” In framing his discussion in familial terms, Alfred implied that the members’ resistance to “living positively” signaled their disavowal of kinship-­based rules of reciprocity and their socially inappropriate resistance to “being good children.” He seemed to ask: is this how you repay your parents for all their generous support? Alfred’s comments revealed a moral predicament that social service providers and HIV-­positive individuals both experience, but providers articulate the dilemma in terms of choice, self-­reliance, and compliance. Association members seem to choose not to be self-­reliant and compliant, yet they demand access to the entitlements that should only be available to citizens with these qualities. The predicament is moral because what is at stake for service providers are both their professional survival and the survival of their organizations, which can only be achieved through the “responsible” uptake of their ser-

Positive Living  ·  105

vices and favorable program outputs, outcomes, and impacts. Organizational survival provides the means for bringing about improvements in their clients’ lives. For the people seeking HIV-­related services, the stakes are many—­social support, financial support for their families, and lifesaving medicines. Alfred’s simultaneous deployment of idioms of kinship relations and of individual responsibility reveals the seemingly contradictory nodes through which HIV positivity is enacted and achieved. He invokes a model of the individual that is at once self-­interested and focused on the larger social welfare of HIV-­positive people. Moreover, his story highlights how donors like the Global Fund become folded into networks of obligations and reciprocity well beyond individual members of a support group, family members, or friends. Program managers and other beneficiaries of organizations like the Global Fund suggest that the organizations are recognized as authorities whose resources are to be respected and whose mandates are to be revered.3 In exchange for their compliance, members will continue to receive the financial support that will help them support their families, maintain high white blood cell counts, and ultimately, improve their quality of life. HIV-­positive people who fail to meet the obligations to the donors outlined by organizational leaders like Alfred—­but not explicitly outlined by the donors themselves—­are “not good children.” Nor do they deserve the rewards customarily bestowed upon good children. By imagining a familial role for donors, Alfred lays bare the failures of the state to provide such support. And as he highlights a scale-­back in the state’s ability to provide social welfare services, Alfred also points to a scale-­up of a new kind of family of HIV care and support.4 Concurrent with this scale-­up of family is the (not entirely intentional) infantilization of HIV-­positive persons who are active participants in these groups. “Scaling up” is a phrase used in international health and development projects to describe “the ambition or process of expanding health coverage of health interventions but can also refer to increasing the financial, human, and capital resources required to expand coverage” (Mangham and Hanson 2010, 85). To talk of bringing a program to scale is not only to describe the expansion of program resources and their potential effects, but also to highlight the standards and values that accompany such a massive undertaking.

106  ·  Positive Living

(No) More Like Me: Like Children After concluding his story about the parents and the good children, Alfred said that “2007 should provide people with the opportunity to better themselves. Which reminds me: Are you going to meetings to eat?” Throughout the year, numerous “positive living” workshops were organized for people living with HIV in Freetown and other major towns. At most workshops, including one that I attended in December 2006, each participant wrote her name on an attendance list. Such lists provided the means by which meeting organizers verified per diem and transportation allowance recipients. Although well attended in the morning, the meetings’ ranks would swell by lunch, and hundreds of people waited in line to collect their meals. By the middle of the day, participants received a lunch of fried rice with chicken and vegetables and a canned soft drink. Many of the women in the dining area wrapped their meals and drinks and packed them away in their bags to take home. At the end of the meeting, all who were listed on the sign-­in sheet were asked to gather outside the meeting room to collect at least 10,000 leones—­or approximately three U.S. dollars—­for their transportation allowance. At the time, it cost less than fifty cents to travel to the meeting site from the farthest destinations in Freetown. Meeting organizers often complained that participants attended the meetings for the per diem, free meals and snacks, but did not take seriously the messages relayed during the sessions. Given the high cost of food and the rarity of free meals in Freetown, it should not have been surprising that many people did attend the meetings to eat, to collect transportation allowances, and to get HIV prevention-­themed T-­shirts. To deny this would be to deny that many members of the associations found it difficult to make ends meet. They often leveraged their serostatus to obtain goods that they could not otherwise afford to buy. I once asked and often wondered if leaders like Alfred ever considered that the messages being relayed might not be important to their intended audience, or that audience members had, indeed, considered the information they received but simply disregarded some or all of it. Conversely, did it matter whether the messages were being communicated or absorbed properly? In their answers, they suggested that conveying information was always good. In Alfred’s case, he felt a religious duty to warn his constituents about HIV. Yet one cannot ignore that these conflicts provided

Positive Living  ·  107

an opportunity for Alfred to showcase his compliance, to demonstrate his worthiness for aid (although he declared that he didn’t need it), and to highlight the sacrifices that he had made for his fellow “HIV patients.” Many of the association members complained that he treated them like children, raising questions about how his own process of subjectification—­ of self-­making—­was constituted through his scrutiny of others, through his determination of whether others “looked good.”

Labors of Vision In HIV programs, looking good reflects an HIV-­positive person’s espousal of positive living ideals and his compliance with program agendas. When an “openly” HIV-­positive person looks good, she effectively debunks persistent images of HIV/AIDS as a visible “killer” and of an HIV diagnosis as a “death sentence.” When an HIV support group member looks good, she is making appropriate use of program inputs. In both of these cases, looking good has a moral underpinning; it is conflated with “looking well,” being well, and being good. A consideration of the nature of HIV and of how antiretroviral medications work, however, raises suspicion about such a neat overlap.

Looking Good, Looking Well When someone is diagnosed with HIV, she may not have any symptoms or visible signs of illness. Recovery from HIV-­related illnesses may not always be attributable to anything besides medications. Conversely, some patients may do “all the right things” and still become sick and appear ill. Yet these possibilities—­of doing nothing and looking well or of doing the right thing and appearing unwell—­rarely surface in discussions about what it means to live positively. Rather, positive living, as it is currently imagined, forecloses these possibilities. “Living positively with HIV” calcifies the preeminence of the will, of positive affect, and of self-­reliance. Positive living is advanced through specific programs directed at improving quality of life, increasing treatment adherence, and averting AIDS deaths. Still, HIV programs themselves—­from donors, the state, NGOs, and community-­based organizations on down—­do not regularly consider why surfacing practices like living positively, showcasing vulnerability, or even disclosing one’s status, produces unstable effects.

108  ·  Positive Living

At one of the ASA meetings, when Alfred gave members the opportunity to air their concerns, Fina, one of the members who led the parade described earlier in the chapter, began a tirade against what she felt were the shortcomings of the organization: staff members had promised to provide tarpaulin to cover the roofs of members’ houses to protect them from the lengthy rainy season that Freetown experiences from mid-­May to mid-­November each year. Distribution of tarpaulin and other goods, she argued, would have to account fairly for specific vulnerabilities that many of her comrades were living with on a daily basis. She requested that the group leaders and staff visit their homes to see their poor living conditions. The others, who formed a movement within the group to encourage more active spectatorship among the ASA staff, supported Fina’s demand.

Keeping Up Appearances Community Health Program (CHP), located in the notoriously crowded and traffic-­burdened East End of Freetown, is funded by a faith-­based parent organization. More than eighty people attended meetings on a biweekly basis, often spending three or more hours at the office, chatting, joking, and collecting antibiotic prophylaxis against opportunistic infections. At CHP, the production of making oneself and one’s condition visible is often raised in the context of the group. During one Friday meeting in September 2007, Jeneba, a pretty, plump woman wearing a yellow African design shirt, stood up. She elaborated on another woman’s comment about creating income-­generating opportunities for women to improve their ability to prevent the transmission of HIV. Pointing at her body she said, “It’s women who spread this disease. You see how good I look? I have men around me all the time, men who want to be with me. And if I tell them that I have HIV, you think they will believe?” Members of the group answered her question, as did I, with the shake of the head: “No.” “Aha! So when I ask for them to use a condom, they won’t agree!” She finished by saying that providing women with the means to make money would allow them to better choose their partners, specifically rejecting men who refuse to use condoms. In my field notes describing this event, I wrote questions in the margins: if so many men were pursuing her, didn’t that mean that she had a choice of men, regardless of her own poverty? If she had money, how

Positive Living  ·  109

would this change her own desires for sex and companionship with a man? Would condom use and its meanings disappear or possess a different significance in a more economically balanced relationship? How do I make sense of the characterization of a universally weak African woman in a context where women often do exercise a great deal of agency—­ almost to the point of independence—­in their lives? Jeneba’s comments seemed at odds with the women I had come to know during the years that I lived in Freetown and other parts of Sierra Leone. After months of revisiting this scene and learning more about how the meeting attendees postured in the presence of outsiders—­especially those presumed to have powerful connections to donors and large NGOs—­I wondered if this was a strategic attempt to articulate struggles that women face in a way that resonated with common representations of them. Recognizing the performance and its success as objects worthy of analysis, I realized that my focus on the inconsistencies in Jeneba’s story was the product of a well-­honed humanitarian skepticism of such stories, but it also mirrored a cynical anticipation of how I might be positioned to “read” her story. As Liisa Malkki noted about Burundian refugees living in Tanzania, these stories are told so that they can be legible and audible to the humanitarian enterprise (Malkki 1996). Yet her informants do this strategically, and they are aware of the terms of the narration and requirements for self-­portrayal. Informants get so good at this type of narration that humanitarian workers often struggle to sort truth from fiction, even as they attempt to appropriate these stories for their own missions. Jeneba was aware that wealthy outsiders often (only?) came to Sierra Leone to bear witness to suffering and perhaps to make short-­term strides to alleviate it. Jeneba performed her vulnerability in a way similar to that outlined by postcolonial theorist and psychoanalyst Frantz Fanon, in which essential difference is performed in the manner colonizers had envisioned, imagined, or anticipated. In this case, Jeneba imitates—­or at least narrates—­the “Western global health” version of African women’s essential difference. The difference is characterized in terms that privilege classical economic utilitarianism, in which risk-­benefit analysis is rationally evaluated by an independent, autonomous actor. When this model is applied to women living in poverty, all decisions are motivated by a desire for money. Thus, when it comes to sexual decision making—­which is motivated by many things, like love, trust, fear, and even boredom—­poverty is represented as the ultimate factor in the decisions Jeneba was making

110  ·  Positive Living

about sexual relationships. She gave voice to this essential difference, staging and performing the images and discourses already circulating about the African woman within humanitarian circles. To continue to receive financial and nutritional support, clients of HIV treatment programs like Jeneba constantly reshape and refashion themselves to meet the multiple demands placed on them by shifting programs, donors, and other institutions with the means to provide support to people living with HIV/AIDS. To reap benefits from these institutions, one must make oneself intelligible to the numerous agencies that serve HIV-­positive people. In so doing, people also help to structure and maintain the conditions of their subjection, while bureaucratic institutions continue to rely on these categories of vulnerability to organize their work.

Being Seen, Inviting Onlookers At another meeting of this same CHP support group, rice was scheduled to be distributed to group members. When the time came to distribute the food, Siaka, the program manager, and one of the nurses, Hawa, left the meeting room to review the new World Food Program (WFP) food agreement. According to the new contract, only forty-­eight people would receive food rations, rather than the 100 or so who had been benefiting under the previous agreement. WFP was explicit in its letter: the amount of food given to each beneficiary was not to be reduced to accommodate all 100 people in the group. After all, not all HIV-­positive persons were sick enough to require additional nutritional support or impaired enough not to be able to provide for their families. The two of them sat with the letter, trying to figure out how to tell the support group members about this serious shift in protocol. As I sat with them, they told me that this was not the first time WFP had asked them to cut the rations provided to the group members. Rather than limiting the number of people who would receive the rations, they had simply reduced the rations and distributed them to all members in attendance. That way, they suggested, no one would be singled out and removed from the receiving line, nor would CHP be responsible for making subjective determinations of “vulnerability.” It was clear from this new agreement letter, however, that WFP had caught on to Hawa and Siaka’s redistributive plot—­most likely when they discovered that the recipient list had not

Positive Living  ·  111

decreased with the food supply. Upon receipt of the WFP’s more explicit instructions, Hawa and Siaka had no choice but to reduce the number of members who would receive the WFP rations. When Hawa and Siaka announced to the group that rations would be provided to fewer people, several members immediately pleaded with Hawa to invite the WFP people to their meetings. If only WFP could come, exclaimed one woman, they could explain the hardships they faced, the various problems they experienced. “Yes, we should talk to them!” exclaimed another. In response to the support group members’ reaction to the news, Hawa and Siaka looked skeptical. They doubted that “talking” to the WFP—­who had cut its rations without remorse and in anticipation of the organization’s response—­would change the amount of food it would donate to the group. WFP would no longer allow redistribution of fewer goods to more people. This letter seemed to be a harbinger for further reductions and the eventual phasing out of food rations in general. Now, the support group had to work together to decide who would receive the substantially reduced food rations. Suddenly, the discussion turned to the central question of suffering and vulnerability. How would they measure it? Surely not by how wonderful they looked at meetings or by how much weight they gained from week to week. “When you do make your decision about who gets the rice, you should visit each support group member’s home,” said another member. The rationale underlying their request was that they all try to come to the meetings looking their best. Many of them donned their finest clothes and shoes and brought their scrubbed-­down and immaculately dressed children. They contrasted how they appeared at meetings, however, with how things looked at home, where they were struggling to make ends meet for their families. For their vulnerability to be properly assessed, they argued, the team must come to their houses, see how things “really are.”

Exhibiting Self-­Reliance, Demonstrating Vulnerability By making an effort to “look good”—­washing with warm water and soap, oiling bodies, putting on perfume, and wearing African dress to meetings—­ HIV-­positive people demonstrated their responsible uptake of donor-­ funded interventions and, more generally, their determination to look good to their neighbors, family, and friends in everyday encounters. In so doing, they are recognized by these institutions as responsible subjects,

112  ·  Positive Living

actively taking part in producing their own well-­being and demonstrating their gratefulness for the resources provided by “mother and father” (to quote Alfred). Yet these men and women must also perform vulnerability—­exemplified both by Jeneba’s speech and by the reaction of the CHP association members to the WFP cutbacks—­to continue to receive the financial and nutritional support that helps them to look so good in the first place. In this sense, clients of the support programs are impossible subjects. They constantly reshape and refashion themselves to meet the multiple demands created by programs and their donors. An individual must make herself intelligible to the numerous agencies that serve HIV-­positive people. In so doing, she facilitates and maintains the conditions of her subjection. At the same time, bureaucratic institutions continue to rely on these categories of vulnerability to organize their work. Rather than simply evoking visibility as a pernicious tool of surveillance, domination, and control—­or as having the potential to produce relations of mutual recognition—­these scenes also reveal how multiple actors strategically manage what is made visible to their intended audiences. These manipulations must confront the duality that visibility poses in the context of asymmetrical power relations. As Star and Strauss write, “On the one hand, visibility can mean legitimacy, rescue from obscurity, or other aspects of exploitation. On the other, visibility can create reification . . . for surveillance, or come to increase group communication and process burdens” (Star and Strauss 1999, 9–­10). Recently, Danny Hoffman has described the “attention economy” that emerged during and after the Sierra Leone and Liberian wars. He observed how young ex-­combatants worked to “direct” and “capture” another’s gaze to generate not only profit, but also media attention for their cause (Hoffman 2011, 958). Jeneba’s account, taken together with others, is an example of the kind of visual labor he describes. Put more plainly, it takes a lot of work to look so vulnerable. The poor Sierra Leoneans who patch together food aid, odd jobs, and other social assistance to eke out their living are ensconced in what David Graeber has characterized as lopsided structures of imagination (Graeber 2012). Crudely put, lopsided structures of imagination refer to the situations in which the oppressed are in the position of having to imagine what the oppressor is thinking in order to behave appropriately in his presence. In this particular case, they are placed in the position of not only proving their vulnerability—­t heir

Positive Living  ·  113

essential humanity—­but also of guessing what type of human they need to be for humanitarian projects to continue to operate. In the case of support group members who expected people to visit their homes and “really see” how they were suffering, recognition of one’s vulnerability and of one’s daily struggles, even in relation to other members, are primary aims in their encounters with aid groups. That visibility of vulnerability is the desired effect of these pleas turns Foucault’s ideas on their head. Observed vulnerability, ironically, shifts power relations in favor of those being seen, especially if it results in increased food rations, invitations to participate in income-­generating projects, or other valuable resources. To assume that this power shift has overturned the uneven power relations between donors and their recipients would be an overestimation, however. These techniques of staging vulnerability might fall under a rubric of tactic agency—­or the art of the weak—­as a means of retaining access to seemingly fickle HIV/AIDS resources (de Certeau and Rendell 1984; Scott 1987). More concretely, the subject of the humanitarian gaze has invited her onlookers, in hopes that they will see what she has effectively gauged for herself; she is, indeed, “vulnerable,” however agents from NGOs and donors conceive of vulnerability.

This page intentionally left blank

III

HIV and Governance

This page intentionally left blank

5

For Love of Country Model Citizens, Good Governance, and the Nationalization of HIV As a Government, we will remain committed for a well-­governed HIV response. I urge our mothers and fathers to be accountable to their children to ensure that the virus is not transmitted to their unborn. Our young men and young women, who we look up to for future leadership, should be accountable to each other for responsible relationships. To be serious about zero new HIV infections in our country, we must not only prevent HIV infection but also care for those infected. —­President Ernest Bai Koroma, World AIDS Day Presidential Address, 2012

When I arrived in Sierra Leone to do preliminary fieldwork for this project in 2005, my host Omar, a government worker and son of a former civil servant, offered to introduce me to two high-­ranking officials in the National AIDS Secretariat (NAS). Part of the government of Sierra Leone, the NAS is responsible for coordinating the national HIV/AIDS response. It also helps to manage the National AIDS Council, for which the president serves as chairman. At the time of my preliminary fieldwork, the NAS was only three years old and its leaders were “returnees” or “just come” Sierra Leonean elders—­t he name for Sierra Leoneans who had lived abroad and returned to help rebuild the country—­who had built distinguished international careers in public health, laboratory science, and sociology. Although Omar seemed to respect the elder statesmen, he disparaged the NAS’s relative opulence: the building had twenty-­four-­ hour electricity at a time when the majority of Freetown’s residents were lucky to have two to three hours of light once or twice a week. (Said Omar, “Even the president’s office turns out the lights!”) Each of the offices was reportedly equipped with satellite television; the leadership’s seemingly exorbitant salaries were paid in U.S. dollars; and the secretariat possessed a fleet of brand new Land Cruisers to traverse the heavily pitted roads of Freetown. 117

118  · For Love of Country

Omar was also skeptical of the organization’s methods. Rather than developing new, context-­appropriate health education materials, he noted, the office team had instead replicated signs from earlier prevention efforts in other African countries (one poster, for example, featured the “AIDS can get you totally wasted” slogan from a 1980s campaign in Zambia). At first glance, Omar seemed to be criticizing the organization’s leaders for mismanaged funds and misplaced institutional priorities. In reality, he reserved his most biting criticism for “the system”—­in this case, health and development aid—­for creating these disparities and the misplaced priorities that he perceived. After all, the constant electricity, new vehicles, and big salaries did not violate any official rules, since none of these expenses could have been incurred without approval from donors and government officials. If anything, the cars, the logos, and the nondescript posters were characteristic features of development aid worldwide. But Omar did suggest that such extravagances came at the cost of local legitimacy. Besides posters and public campaigns, what had the NAS done to prevent and mitigate the effects of HIV/AIDS? To be fair to the NAS leadership, antiretroviral therapies were not widely accessible in Sierra Leone in 2005, so speeches, posters, and public education were among the only options organizations had to address the AIDS epidemic. But the disparity between the resources invested and the outcomes achieved, between the perks given to the employees of this organization and those given to other government workers, and between the resources distributed for HIV/AIDS and those given to other diseases, all offended Omar’s sensibilities. Any system that distorted the local economy and deepened disparities under the pretense of improving lives, he suggested, was not above critique. Omar’s criticism of the NAS reflected a common critique of standard practices across a range of development projects. The development and humanitarian industries—­which Omar often dismissed as neocolonial in their organization and scope—­transgressed local norms against conspicuous consumption among public (and nonprofit) employees. But Omar was also railing against an HIV/AIDS industry that he believed to be cultivating and rewarding empty performances for a presumptive “international community.” The “emptiness” of these performances appeared to go unacknowledged—­at least, officially—­by donors. Omar saw this as evidence that Western donors condoned posturing as part of a le-

For Love of Country  ·  119

gitimate, organizational response for a disease as globally important as HIV/AIDS. In such performances, government officials actively sought and received praise from international bodies for the seeming improvements they were making. In these same performances, they also entreated Sierra Leoneans to “govern themselves” better. This better self-­governance was couched in terms of both sexual responsibility and care. In this chapter, I address some of ways that global HIV/AIDS programming norms shape both the official performances of “good governance” and local expressions of political subjectivity among HIV-­positive people. My argument is threefold. First, taking up a thread from chapter 2, I highlight how both the counting imperative of biopolitics (the management of populations and optimization of their vitality) and the caring and nurturing side of the biopolitical embrace (one might ironically call it “the armed side”) shape how government officials describe and demonstrate national progress to international observers. I briefly examine how the metrics and standards for national HIV response served as proxies for measuring good governance and political will. Specifically, I describe how the numbers matter—­how they come to be meaningful in everyday political calculations, narrowly defined. The numbers also demonstrate progress in the rebuilding of a post-­conflict African nation on a global stage, even as they also draw attention to hypocrisy of the “developed” countries that fund these initiatives but have trouble managing their own epidemics among marginalized groups.1 Second, I argue that state officials, like the president, and social commentators, like newspaper editorial writers, appear to address two audiences when they discuss national progress and development in terms of “the fight against AIDS.” The first (and primary) audience appears to be “the international community,” for whom specific measures of progress are recounted. The second audience is Sierra Leonean citizens, who are repeatedly implored to monitor their sexual comportment, to pursue heterosexual intimacies responsibly, and in doing so, to contribute to national economic and social development. Third, I identify the HIV clinic as a diagnostic site for exploring the connections between state forms of caregiving and sexual citizenship, a place where individuals receive instructions about how to leverage their sexual comportment for national progress. The clinic is also the location where HIV-­positive leaders express their personal and political

120  · For Love of Country

commitments to their intimate partners, their fellow citizens, and to Sierra Leone. Ultimately, I describe how an examination of sites at different “scales”—­t he national and the clinical—­has theoretical implications for medical anthropology’s concepts of therapeutic citizenship, biological citizenship, and biosociality.

Accounting for Progress: Does an Epidemic Speak? The presumed strategic importance and efficacy of state leaders “speaking out” about HIV/AIDS for the sake of public health—­and then talking about their achievements in light of the numbers—­has a distinct history. Speaking out about HIV has long served as a proxy for political will: after all, if leaders speak openly about AIDS, the logic goes, then they are likely to make it a priority in policy agendas. And if HIV prevalence figures decline, reflecting this political commitment, then there is evidence that “speaking out” serves an epidemiological purpose. Many critical observers interpreted the spectacular silence of U.S. President Ronald Reagan on AIDS during the 1980s to be a form of deep denial that was equated with death (Nelson 1999; Shilts 2000). By the time that Reagan had made his first official statement about the disease in 1987, 20,000 Americans had died, and 36,000 had been diagnosed with AIDS-­related complex (Gamson 1989, 359). The magnitude of these numbers, oft-­repeated by radical AIDS activists, signaled Reagan’s disregard for the lives of his fellow citizens and a lack of political will to address the problem. Like Reagan, French President François Mitterrand was relatively late acknowledging the problem in public forums. The legacy of negligence in North America and Europe, reflected through silence in the midst of increasing numbers, can be felt today. During a plenary session at the biennial meeting of the Association for Social Sciences and Humanities in HIV/AIDS in Paris in July 2013, French AIDS activist and politician, Jean-­Luc Romero, described how HIV-­positive individuals in France continued to struggle with securing housing, employment, and medical care, using the numbers to buttress his case. In the United States, there has been an increase in new infections among young people of color. Such statistics only appear to gain national attention during election cycles or, as in the case of 2012, when the International AIDS meeting took place in Washington, D.C. (Silva 2011).

For Love of Country  ·  121

In the African context, tracking HIV infection numbers and the “accounting” practices of HIV programs provide the organizing logic for describing national advancement toward indices of development and social progress. During the early 2000s, Uganda’s Yoweri Museveni became a darling of the international health set, as Uganda’s prevalence declined from 15 percent to 7 percent between 1991 and 2007 (Allen and Heald 2004; Butler 2005; Green et al. 2006; Parkhurst 2002; Stoneburner and Low-­Beer 2004). Many argued that the decline was directly attributable to his aggressive Zero Grazing campaign, in which Museveni publicly advocated for monogamy and the so-­called “ABC” method of HIV prevention—­Abstain, Be faithful, and use Condoms. More skeptical observers were less certain about the causal links among outspoken leadership, demonstrable political will, behavior change, and HIV prevalence. During a presentation by anthropologist Ted Green on Uganda’s HIV prevention successes, given at Harvard’s Center for Population and Development Studies in 2004, a prominent political scientist suggested that Museveni “threw everything but the kitchen sink” at the HIV epidemic; thus, no particular factor could be identified as the definitive cause for the decline in prevalence. During this same heated discussion, skeptics in the room subtly hinted that the Ministry of Health might have fudged the numbers to appear successful to outside observers. And others—­ epidemiologists, social scientists, and other public health practitioners—­ wondered whether deaths accounted for the shift, or if Ugandans simply changed their sexual behaviors after watching friends, neighbors, and family members fall ill and die from the disease. Former South African President Thabo Mbeki was often portrayed as a foil to Museveni in popular discourse on the fight against AIDS in Africa (Parkhurst and Lush 2004).2 In addition to witnessing little positive change in prevalence during his presidency, Mbeki was also vilified for giving voice to alternative scientific arguments about the links between HIV and AIDS. The leader also made reference to an inherited and embodied legacy of apartheid and colonial violence in shaping transmission dynamics (Fassin and Schneider 2003; Fassin 2007). South Africa’s prevalence continues to be the highest in the world, although incidence did begin to decline among younger groups in the mid-­2000s, even as it increased among older groups. As of this writing, prevalence in South Africa has stabilized (Karim et al. 2011; Katz and Low-­Beer 2008; Rehle et

122  · For Love of Country

al. 2010). Deliberations about weakness and failure in light of HIV prevalence and incidence numbers—­and the anemic hug of biopolitics they reflect—­are uneven in their application. As the United States tries to throw its arms around the world, so to speak, with the largest HIV/AIDS program ever in Africa, African American women, Latinas, and gay men of color comprise a disproportionate share of AIDS infections and deaths (aids.gov; minorityhealth.hhs.gov). Focusing on political will in light of HIV prevalence and incidence figures—­high seroprevalence, in the case of South Africa; declining and then rising numbers, in the case of Uganda; and low but rising incidence among marginalized groups in the United States—­suggests that states’ abilities to respond to epidemics says something more general about their relative strength and organization, about their perceived failures or weaknesses. Where African leadership is concerned, an inability to control an epidemic seems to point to an inability to govern. While it seems that there’s no reason for leaders not to be proud of declining HIV incidence, or to hold it up as progress toward national goals, it is less clear that it should be an important standard against which their ability to govern is judged. Undergirding the practice of calculating countries’ responses to AIDS is an uneven global distribution of power. This emphasis on numbers in calculating national progress toward global benchmarks raises the question: Who is subject to assessment in the first place? Whose authority dictates the standards against which progress is measured? Who succeeds and fails according to these metrics? In the United States, for example, the disproportionate numbers of men and women of color living with HIV and dying from AIDS is not seen—­at least not in mainstream narratives—­ as a failure of governance, but rather a failure of the will, the consequence of a faded collective memory of struggle, and a complacency borne of past successes now taken for granted (Morris 2012; Sessums 2009; Brown et al. 2012). In Sierra Leone, accountability for shifting the numbers works at multiple levels: leaders are accountable to donors and partner NGOs as well as to an “international community”; and clinic and supply chain managers are accountable to both the HIV-­positive individuals who rely on the drugs to keep their CD4 counts high and their viral loads low, and to the monitors who frequently visit from abroad to check their work. President Ernest Bai Koroma, who took office in 2007, and who, at the time of this writing, is serving his second five-­year term, delivered sev-

For Love of Country  ·  123

eral speeches in which he mentioned the government of Sierra Leone’s successes in fighting the HIV epidemic. On World AIDS Day 2012, for example, he addressed Sierra Leoneans: Fellow Citizens. Today . . . marks yet another World AIDS Day, a day we continue to commemorate and to demonstrate our commitment to addressing HIV/AIDS. It is a great honor for me to address the nation today on an issue that is very pertinent to our economic growth, prosperity, and survival as a nation. Fellow Citizens. The Global Theme for this year’s commemoration is “Getting to the Three Zeros by 2015.” That is Zero New HIV Infections, Zero HIV-­related Stigma and Discrimination, and Zero AIDS-­related Deaths. We can achieve this goal by collectively harnessing the full power of our will and the full engagement of our partnership with civil society and our development partners. I am pleased to inform the nation that HIV/AIDS will continue to be one of the key issues on my Government’s Development Agenda. As long as we have Sierra Leoneans infected and affected by HIV/AIDS, we will continue to remind ourselves that the struggle against HIV/AIDS is far from over. Our national HIV prevalence has stabilized at 1.5 percent over a four-­year period and we are today witnessing a decline in the infection rate among our pregnant women. (http://www.statehouse.gov.sl/) In other speeches he delivered on HIV/AIDS and development, Koroma acknowledges that these successes have not gone unnoticed by international observers. In 2010, Sierra Leone received a Millennium Development Goal (MDG) Award for its progress toward MDG6, “to combat HIV/ AIDS, malaria, and other diseases.” The award—­not given by the UN itself but rather a firm working “in consultation” with the UN—­serves as evidence of the country’s progress toward global indicators of development and its compliance with biopolitical values. Sierra Leone’s progress in curbing new HIV infections has boosted President Koroma’s credibility as a leader. In July 2013, he was asked to make a statement during the Special Summit of the African Union on HIV/AIDS, Tuberculosis, and Malaria in Abuja, Nigeria. The meeting’s theme was “Ownership, Accountability, and Sustainability of HIV/AIDS,

124  · For Love of Country

Tuberculosis, and Malaria Response in Africa: Past, Present, and the Future.” Addressing African heads of state, Koroma drew on data that showed that Sierra Leone had reduced new HIV infections and was in agreement with the “aiming for zero” goal set by UNAIDS in its most recent global campaign. Koroma noted, “We have shown leadership as a nation” (http://aidsaccountability.org/?p=8877). Social commentators, like the author of the editorial below, aim their criticism at Sierra Leonean women and look outward for role models, as they point to changing sexual norms and their relationship to national progress and the threat of HIV/AIDS: Most of our ladies today in the different spheres of life are more or less a liability to the nation due to the diverse ways they prostitute themselves. . . . We must not also forget that out there are so many sexually transmitted diseases including the most dreaded and deadly HIV. So go and get one with HIV/AIDS and you’ll become history in no time . . . I look at Liberians with blissful eyes today for creating a space for a new era in the lives of African women because they could rely on the credibility of Ellen Johnson-­Sirleaf who makes the first woman [president] in the Continent. And back home I pity some of my fellow sisters who are yet to come together and work in unison to push the country forward. We should be thinking of development rather than steadily concentrating on how many catches one should have per day; the little a woman can do will go a long way in making this country a better place. As we approach a New Year emancipate your minds from immorality and distortion due to the heavy workload in the city, be vigilant and seek betterment in a transparent way. Do not say you are not strong. In terms of output, the ratio of men to women is 50–­50, but that does not mean that you should treat men like a set of inferior people and they also deserve some respect. Remember this is Africa. (Kandeh 2005) The president’s speech addressed to “fellow citizens” and the national newspaper editorial addressed to “our ladies” implicate multiple actors and audiences in the addressees’ attempts to analyze and shape the HIV epidemic—­and its associated sexual practices. The audiences, however, are

For Love of Country  ·  125

not simply the people to whom these comments are directly and explicitly addressed; they are also outward-­facing demands: to Liberia (in the case of the editorial) and comparatively across the continent; and to a presumed international community (in the case of the president’s speech). These self-­ conscious articulations raise additional questions about how various forms of governance—­self, national, and international—­are entangled with each other and perceptions about HIV transmission. Encounters between international visitors and program managers also reveal the tensions associated with demonstrating competence through efficient use of program goods and the kinds of self-­questioning that oversight engenders. One such instance occurs with the frequent evaluations of health departments’ supply chain management and pharmaceutical logistics, and the ways that clinicians also become involved in discussions about the drug supply.

Making the Drugs Count In September 2007, I attended an HIV workshop for physicians who worked at government health facilities. During the meeting, one of the facilitators, a doctor responsible for educating clinicians about the HIV treatment guidelines, announced that anyone who tested positive for HIV should receive treatment. This was not standard practice at the time. Sierra Leonean clinicians had been following WHO standards, which instructed clinicians to provide antiretroviral therapies only for patients with CD4 cell counts of less than 350 cells/mm3 or with one or more of the opportunistic infections listed in the staging guidelines. The doctors who advocated changing the treatment guidelines felt that some people who tested positive—­even if they did not meet the WHO criteria—­would wonder why they got tested if they were not going to receive immediate treatment for their HIV. Were they supposed to wait until they were sick to seek treatment? For those who were tested because they were sick, this was less of a problem, because any of the opportunistic infections would warrant treatment. But what about patients who had received the test while pregnant, before undergoing another procedure, or out of curiosity? The public service announcements that encouraged healthy people to be tested for HIV emphasized the fact that free treatment was now available. Whether they should prescribe drugs to earn their patients’ trust, however, was not the doctors’ only concern. They also worried that an

126  · For Love of Country

oversupply of drugs would appear wasteful to international donors. On a fairly routine basis, donors and NGO staff from the United States and Europe were sent on two-­week missions to assess how well the government facilities were managing the diagnostic equipment and drug supply. During these trips, foreign visitors reviewed stocking records, visited the storehouses, and interviewed the program logisticians. Program managers were concerned that their drugstores had remained too full to receive positive evaluations. They felt that any negative assessments reflected poorly on their management skills. To have overstocked was a management error with potentially grave consequences. The overstock of drugs came as a result of the previously inflated prevalence estimates and the assumptions about what the postwar period would hold for HIV epidemiology. Staff members worried about if they would be perceived as ineffective bureaucratic managers of donor goods if they had an overstock of drugs.3 Donors’ perceptions about the “ineffectiveness” of the Sierra Leonean state were personally felt by program managers and government staff who worked hard to prove their value and competence to international donors and to bring lifesaving technologies to the people who needed them. That they devoted any time, moreover, to thinking about how donors and their representatives perceived them and their actions (in terms of state failure, ineffectiveness, and inefficiency) and that donors and their representatives rarely engaged in self-­ assessment in the same way, revealed the transnational hierarchies in which HIV care is delivered.4

Do It for Your Country HIV prevention, care, and treatment sites create opportunities to articulate particular fantasies about the obligations of the state to its people and vice versa. They enable discussions about sexual morals with specific resonance for the progress of the state. Even as transnational entities dictate the terms of development, the state remains a potent entity imbued with meaning and “meta-­capital” for those who recognize its legitimacy and authority. In fact, the transnational character of development and health programs may even fuel these debates and enable previously unimagined relationships between so-­called “failed states” and individual citizens (Aretxaga 2003; Biehl 2004).

For Love of Country  ·  127

It was not uncommon to see a model of the citizen caring for the state expressed in terms of a “sexual citizenship” in the everyday work of the public HIV counseling clinics. This was particularly true in the clinics managed by the more patriotic employees—­like those working at the military hospital. One February, when the office was bubbling with pre− Valentine’s Day cheer, I walked into the HIV/AIDS office to observe daily activities and socialize with the group of counselors. Office occupants prominently displayed Valentine’s Day cards from their admirers. Sergeant Irene had just started a pretest counseling session with a girl in her early teens. Three or four staff members sat in chairs crammed into the corners of the cramped office. As I sat at my own desk—­which was situated about three feet from the sergeant’s—­t he chairman of the HIV support group came through a door that led to the office’s only toilet and two examination rooms. The chairman closed the door behind him and pointed his finger at the girl. Whistling softly, he adjusted his cap and asked, “This one is already sleeping with men?” He shook his head in disbelief as he exited the office. The girl sat with her back to me and faced Sergeant Irene, her hands folded in front of her. Throughout the counseling session, she would look back at me, as if to catch a disapproving look or gesture. Her hair was braided back in fuzzy cornrows, a hairstyle befitting her age, upbringing, and occupation. As she waited quietly, Sergeant Irene pulled out an expensive, U.S. government−issued rubber penis. The penis model, which was pink flesh-­toned and perfectly symmetrical, inspired jokes, giggles, and admiration from the office staff when Irene pulled it out for counseling sessions. Holding the rubber penis in her hand, Irene asked the girl if she knew what the object was. Gripping it firmly at its base, she shook it at the girl, and said, “It can make girls pregnant, and it can bring sickness. It is dangerous, but if you know how to use it, it’s very nice.” She continued to speak, using her “counseling script,” reminding the young girl that she was not fit to be having sex at her age. Expressionless, Irene asked the girl who initiated the sexual relationship. Did he approach her for sex? The girl admitted, again quietly, that she initiated sexual contact with a man. Sergeant Irene, craning her neck to see around the girl, addressed me with a raised voice. She spoke to me in English. “You see the difference? She went for it. That man is not her boyfriend. He didn’t come to her. . . .

128  · For Love of Country

She went to him!” Turning back to the girl, she said, “Now that you have begun, let me advise you to delay . . . because you will not be able to concentrate on school. When you sleep [she closed her eyes to feign sleep], you’ll remember it when you close your eyes at night.” She opened one eye, kept the other closed, and held up the rubber penis. “You enjoy? Is that what makes you go to him, one time, two times, three times? How many times did you go to see him?” Digressing again, Sergeant Irene told the girl and me about her first sexual encounters as a college student. “I thought I was old enough and knew what I was doing. But I didn’t know anything,” she said. “How many times did you go to him?” she asked again. “One time,” the girl said. “You lie. You know that when you do this. . . . When you see dogs do it, what happens?” The girl remained quiet. “You’ve never seen dogs do it? When they do it, they have children. You are doing this for what reason? To have children?” Sergeant Irene noisily rifled through her desk drawer. As she pulled a condom from the desk drawer and carefully tore its foil wrapper, she explained the significance of using condoms. “You must use them for your country. It will help to drive the poverty away, and then you can help yourself, your people, so that your time in Freetown would not be in vain. [If you use the condom,] you won’t get children before your time. You can grow up to be a doctor or a lawyer. When you’re a lawyer, you can be fighting for women’s rights. What other professions are there?” “Police . . . nurse . . .” “Don’t try to take the style of the city girls,” Sergeant Irene warned. “Your parents sent you to the city so that you can learn. Forget sex. It’s not bad, but you have to do it at the right time, when you’re ripe. When you can take care of yourself. . . . Sex is a fine thing—­but do it when you’re responsible and when you know that the man is responsible. But now, I suffer. I suffer.” Sergeant Irene looked down at her desk. Gazing at the girl again, Sergeant Irene reminded her that she came from her rural town in the north to get an education. “Instead,” she added, “you have followed a man.” Director, the woman who cleaned the office and greeted the guests in the waiting room, entered the office to take a bottle of water out of the refrigerator. Sergeant Irene continued to speak: “They try to have sex with you in exchange, for 1000 [leones] bread, or 500 [leones] this.” Director

For Love of Country  ·  129

laughed audibly. Sergeant Irene, hearing her laughter, made eye contact with Director and replied, “Na tru?” (“Isn’t it true?”) Director nodded, drank a large gulp of the water, and returned to the waiting room. Shifting her attention back to the girl seated at the corner of her desk, Sergeant Irene told her, “You should enjoy sex. But not now. I am taking time to talk to you, because I care about the country. They say send children to go to school. But you go to school and then you go sleep three days with man. . . . Ask me a question. Any question.” The girl seemed embarrassed. She sat silently, with her right hand at her temple. Sergeant Irene asked the girl her name. She answered very quietly, “Aminata.” “Aminata, you want to suffer like your mother?” The girl shook her head, as Sergeant Irene continued: “The poor ones remain poor because they don’t love their parents. They send you [to Freetown] to better yourself. People will talk about you. Talk, talk. He’s already done that, and other men will too. When you go to school and learn, you will help your mother. Which class are you in?” “Class four.” She explained to Aminata the kind of script that she needed to present to a man before having sex. “You can say, ‘I like you, but I don’t want to become pregnant or get an STI. . . .’ If he says no, say leave me alone. But if he says yes”—­she then used the penis model to demonstrate how to put on a condom—­“make sure that it’s standing up strong before you put the condom on.” Irene unrolled the condom on to the model, pinched the reservoir tip, and suggested methods for disposing of the used condom. After finishing the condom demonstration, she tossed a wrapped condom on the desk and told Aminata to put a condom on the model as if it were a real man. Aminata placed the condom on the rubber penis with surprising ease, all the while repeating the script that Sergeant Irene had dictated to her. By telling Aminata to delay or to have “safer sex” for the benefit of her country—­and as a contribution to the loftier goal of poverty eradication—­ Sergeant Irene suggested that negotiating for condom use constituted a politically charged act. Moreover, Irene implies that, while she and her clients are resigned to accepting HIV policy, goods, and services emanating from sites outside Sierra Leone, they can also “imagine” a nation-­ state within which they can instigate social change through individual

130  · For Love of Country

acts. As Alfred reminded us in chapter 3, there is a role for the individual in bringing about social change. By embracing self-­esteem, self-­awareness, and a willingness to talk through one’s condition, individuals can aid the state’s progression to self-­sufficiency. Although relatively few people can—­or even need to—­access HIV/ AIDS treatment services in Sierra Leone, the clinic remains an instructive site for trying to understand how desires, fantasies, and connections between Sierra Leoneans and the state emerge. In the space of HIV prevention, care, and support, debates around self-­sufficiency, independence, and responsibility surface continually. This is not surprising, since public health workers also rely on these idioms to organize prevention work. Individuals can be criticized for expecting too much from the government or from other institutions that provide care, support, and nurture. They can also be urged to showcase their vulnerability to access goods and services from these institutions and to use resources responsibly. More broadly, discussing social problems in terms of HIV risk is one way to address women’s roles and behaviors in the context of rebuilding nations, national progress, and national identity. In her counseling session with Aminata, Irene makes clear the role of individual women—­as she also relies on collective representations of urban women—­in determining the health and well-­being of the state. Anxieties about the moral national character are often articulated in gendered terms, focusing on the regulation of female sexuality. Writing specifically about the shame of teenage pregnancy in neighboring Liberia, Mary Moran notes that “virtuous civilized status is possible only at the cost of sexual and economic dependence. . . . Pregnant girls misappropriate and waste resources of both their families and the nation at large. In effect, they threaten the orderly production of the nation by exerting control over a resource (their own sexuality) not rightfully theirs” (Moran 1990, 129). Male anxieties about their own economic vulnerability are also important in these critiques (Nguyen 2010; Vidal 2001). It was not uncommon, as I have already described, to overhear men’s insecurities articulated in terms of the war’s changing of sexual norms, as well as how postwar sexual behaviors reflected a breakdown of “natural” gender hierarchies, cultural dissolution, and disorder. Upon leaving a well-­k nown restaurant near Lumley Beach, I observed two security guards as they watched two young, long-­legged women leaving with a much older, white American male development worker. I overheard them say, “Before the

For Love of Country  ·  131

war, you couldn’t see so many women going with men like that. Two women going with a man at one time. It’s the poverty. They’ll do anything nowadays. A man without money can’t even find a respectable girl. It’s the war that made women turn to hookers.” That the war served as a temporal break that shattered the intelligibility of sexual relations resurfaced as a trope, deployed by those trying to understand subversions they perceived in postwar life. Such discussions also reveal social divisions related to class, ethnicity, and profession in Sierra Leone. In the case of the counseling session, for example, Irene is a member of the Krio ethnic group. Krios are the descendants of freed slaves and “recaptive” Africans after England abolished slavery in its colonies. This ethnic group was perceived to be “Europeanized” for much of British colonial rule and often took on clerical and civil service roles in the colonial and postcolonial periods. Scholars of Sierra Leone have noted that this characterization refers to a middle-­class and elite group of descendants and does not include the largely working-­ class Krio population for whom religious and ethnic delineations are blurred (Fyfe 2006). Yet the politicization of ethnicity often surfaced in encounters and matters of national significance. Irene’s concern for Aminata’s sexual reputation reveals multiple personal agendas; her professional and ethnic identities are coterminous with agendas for state progress, promotion of HIV program logics, and protection of sovereign bodies. While ethnicity played a less than central role in daily interactions in the sites where I worked, these historical constructions did play a subtle role in how professional and political life was organized and how local geographies were imagined (Kandeh 1992). As a military officer, a nurse, and an HIV counselor, Irene expands her own responsibilities to include the welfare of the Sierra Leonean state. Thus, a counseling session with Irene reveals the ways that gender and sexuality are implicated in the co-­construction of national and subnational identities, particularly in the aftermath of the civil conflict. In this conversation with Aminata, Irene implies that moving from the country to the city has the potential both to improve the girl’s life and to corrupt her morally (and sexually). Though Irene was born and raised in the city of Freetown—­she is a Krio, and therefore the city is her “natural” place—­she reinforces a decades-­old critique of urban women in West Africa, which deems them to be “greedy, sexually uncontrolled parasites who divert men from their responsibilities and impede the progress of

132  · For Love of Country

national development” (Goerg 1995; Fyfe 2006; Dixon-­Fyle and Cole 2006; Little 1973; Moran 2000, 116). As anthropologist James Ferguson has argued, in contrast to the city, rural places provide “powerful metaphors for the construction of indigenous critiques of urban, capitalist, industrial encroachments . . . [providing] powerful alternative moral images to be contrasted with urban realities conceived as artificial, immoral, corrupt, and anomic” (Ferguson 1992, 80). In Sierra Leone, the city takes on an additional set of meanings in everyday talk (Mbembe and Nuttall 2004). Freetown, as the country’s capital and its largest city, is a site of independence, opportunity, and unparalleled access to both formal and informal educational opportunities. For parents and guardians in rural areas, the city can be an important place to send their children to build their character and resilience (Gale 2008). Thus, the city poses both threats and opportunities to individual and national moral character. It serves as a powerful metaphor in the critiques of negative changes in Sierra Leonean society, but the city is also a site for opportunity and growth, as it operates as a node in expansive social networks that run throughout the region and to urban centers in “the West.” As I discussed in the previous chapter, this rhetoric and performance of individual responsibility is linked not only to self-­esteem and its potential to effect social change; it is also linked to how one imagines family, kinship, and belonging in a rebuilding state. As Irene’s counseling session shows, it is also related to the networks of obligations and expectations that arise within families, and among HIV-­positive individuals, the state, and global health institutions. Affective ties between the support associations and their members constitute new forms of kinship and reciprocity, while they also implicate the state and individuals within a moral matrix that frames expectations for care and for critiques of the state’s failure to meet these expectations.

On Biological Citizenship and Biosociality The relationships among HIV support associations, counseling sessions, and the state bring to mind two concepts that have been important in medical anthropology: biosociality and biological citizenship. Adriana Petryna coined the phrase “biological citizenship” to describe how the

For Love of Country  ·  133

Ukrainian state has conferred incentives to people who can convincingly and quantifiably demonstrate illness related to the Chernobyl radiation disaster (Petryna 2002). The people in her ethnography make claims on the government based upon their level of exposure to radiation; they also blame radiation-­related illnesses for interpersonal conflicts and a whole host of social problems. Their illness becomes the means through which they understand their relationships with their families, communities, and the state. As I have already described, multilateral donors—­like the Global Fund for AIDS, Tuberculosis, and Malaria (GFATM, or the Global Fund)—­and bilateral donors like the U.S. government—­make it possible for the government of Sierra Leone and NGOs to provide support to people living with HIV/AIDS. The World Food Program, a UN agency that derives its funding from numerous wealthy countries, provides food rations to the people seeking HIV care at government-­sponsored clinics. These food rations are usually surplus goods from donor countries, like the infamous bulgur wheat and marmite.5 Claims upon the nation-­state, therefore, are not central to biological citizenship in Sierra Leone; rather, they coexist with claims upon multilateral agencies that supplement the government’s efforts. Sierra Leoneans’ claims also draw upon multiple notions of belonging and moral obligations that foreground care, compassion, and empathy in the face of suffering. Members of these support groups are painfully aware of the ephemeral and distant funding sources that support their workshops, provide their much-­maligned bulgur wheat rations, and supply the medicines that keep their CD4 counts high. To deserve the continued support of wealthy donors who, in turn, support the government, members understand that they must be good biological citizens of a global order. Alfred made this point abundantly clear in his interactions with his support group members. Members know that they should be good biological citizens in the sense conveyed by Rose and Novas, who, building on the work of Petryna and others, link biological citizenship to the concept of biosociality—­ “forming associational communities around biological conditions to influence state policy and science” (Rabinow 1996; Rose and Novas 2005; Das 2001). The expectations for citizenship and sociality under HIV/AIDS regimes are not rooted in shared disease biology alone. They are also rooted

134  · For Love of Country

in and differ according to expectations related to gender roles and norms. In the editorial piece from a national newspaper excerpted in this chapter, women and girls are the purveyors of national progress through their decision making about intimate and sexual partnerships. They are vectors of infection because of their choices about their sexual partners—­t he number, class, age, and intention. Rarely were men in the counseling chair questioned about their personal futures in terms of national futures, at least not where sexual practice and intimate partnerships were concerned. The president, however, in the speech delivered some years after that editorial was published, addressed both young men and women, fathers and mothers, and their role in reducing HIV infections and in shaping national futures, suggesting at least a strategic shift in talking about gender and HIV transmission at the level of official national discourse, if not in daily practice. Rose and Novas suggest that biological citizens use information gleaned from their involvement in biosocial organizations (such as support groups) to make medical decisions, often contesting practitioner claims and asserting their rights to specific types of care. They also argue that citizenship projects related to health and illness are centered on particular understandings of the self, citizenship, and personhood that assume a distinction between “the West” and other geographical regions: The forms of biosociality with which they are linked, are specific to certain times and spaces. . . . The kinds of biosociality we have documented in the United States, Europe, and Australia are not merely a product of the availability of certain technological means of communication, but of conceptions of citizenship and personhood. In particular, they connect up, in various ways, with the history of previous forms of activism in the feminist, gay, and AIDS movements, with the varieties of identity politics and the existence of a vociferous politics of rights and recompense. Hence the forms of biosociality that we have documented have no visible presence in whole geographical regions. (Rose and Novas 2005) In this passage, Rose and Novas imply that complex conceptions of the self related to health activism are peculiar to the West. The dearth of members who attended the AIDS Support Association (ASA) monthly meet-

For Love of Country  ·  135

ings (and, conversely, the huge turnouts for meetings at the Community Health Program [CHP]); the accusations of greed and laziness leveled against ASA members; and the considerable praise for model citizen-­ leaders like Alfred from government officials and others, all suggest that biosociality, biological citizenship, and their relationship to personhood require further ethnographic scrutiny. They should not simply be assumed to be the product of obvious (read: cultural) differences between Africa and “the West.” Contrary to what Rose and Novas suggest about non-­Western forms of biosociality and their links to biological citizenship, HIV-­positive Sierra Leoneans also draw upon multiple notions of belonging and concepts of personhood—­many of which could be called “Western”—­to advance their personal and political agendas. James—­who tested positive for HIV in 2005 and was an active member of the National Network for HIV-­Positive People (NETHIPS) when I undertook fieldwork—­ told me that he wants to be a career HIV activist, to fight against the effects of the illness in Sierra Leone. His involvement in national politics both before and during the civil war informed his willingness to be an outspoken leader within and for the HIV community. James’s plan relied on the narratives of assuming personal responsibility to bring about social change provided by the global health apparatus, but it also reflected a commitment to political life in Sierra Leone that he had already demonstrated. There are others—­like support group leaders Alfred and Siaka, for example—­who express similar desires to organize politically around HIV identity, suggesting that local notions of what it means to be a citizen may be, for some, profoundly shaped by a history of activism around political identities, as in the case of North American and European activism around HIV/AIDS. On the other hand, the examples that I presented earlier in this chapter suggest other biosocial and antisocial formations that arise around HIV identity. Some support group members visited multiple groups to maximize their benefits for the good of their families and their own economic advancement—­often at the expense of poorer members of the group. Others consciously sought help from only one group so that more people could benefit from available services. Thus, local notions of citizenship and personhood are also continually reshaped by broader social and economic arrangements that make some forms of

136  · For Love of Country

activism more important than others or, in some cases, that make activism not important at all. Until recently, and as Rose and Novas demonstrate, Africa’s role in conversations about biosociality and biological citizenship has been limited to acting as a foil against which Western forms of biological citizenship are measured. For Francophone West Africa, Nguyen has introduced the concept of “therapeutic citizenship,” which he defines as “claims made on a global social order on the basis of a therapeutic predicament.” Arguing that this concept “broadens ‘biological’ notions of citizenship, whereby a biological construct—­such as being HIV-­positive—­is used to ascribe an essentialized identity,” he suggests that biological citizenship, as an organizing concept, fails to recognize that HIV-­positive West Africans make their claims to global health institutions, rather than to the state (Nguyen 2005, 126). By emphasizing the failure of the state to provide assistance to its people, Nguyen overlooks two critical aspects of the delivery of HIV care in Africa over the past five years. First, as more recently noted by Nattrass, “national governments play a profound mediating role in shaping the supply, demand, and feasibility of a HAART rollout for the national citizens within their borders” (Nattrass 2008, 578). Through funding mechanisms like the Global Fund—­but perhaps not the U.S.-­f unded President’s Emergency Plan for AIDS Relief (PEPFAR), which were a part of Nguyen’s study—­t he state takes on responsibility for distributing antiretrovirals and other resources intended to reduce the HIV-­positive person’s social and economic vulnerability.6 Second, Nguyen understates the extent to which a receding state may still have its “citizens”—­people who continue to pledge allegiance to it, to criticize it in hopes of improving it, and to expect the state’s protection and care in return. Ultimately, HIV-­positive people present their claims for entitlements and justice to both state and supranational governance structures. In other words, they are citizens of both global and national institutions—­if the term “citizenship” is even necessary to define these relationships at all. To emphasize the state’s inability to provide social welfare and to care for its members presumes a natural function of the state. Even as the state “fails” in its perceived responsibilities, it remains a potent fantasy in its members’ claims for justice and aspirations to live moral lives. It is an entity embodied, experienced, and intimately felt. The con-

For Love of Country  ·  137

testations over state power during the civil war, in electoral politics, and in popular cultural forms have left an indelible mark. More important, even as the state recedes from its presumed responsibilities, many Sierra Leoneans still believe in the possibility of a caring state, as they also continue to imagine their ability to care for the state in return.

Conclusion The Future of HIV Exceptionalism

During a debate at the Fourteenth International AIDS Conference in Washington, D.C., in 2012, Mead Over, a health economist and senior fellow at the Center for Global Development, recounted an anecdote from his work: A couple of years ago, I visited a PEPFAR-­supported AIDS treatment center in Western Kenya. It was quite an extraordinary experience because the beautiful, modern, clean, efficient AIDS treatment center was constructed at a clinic which had an existing health structure, and I talked to [the] director who was in charge of managing both of those parts of that facility, and I asked him about that contrast. What he said was, “When I see patients coming out of the AIDS treatment center, those patients are smiling. When I see them coming out of the other part of the health clinic, they’re sad.” I put to you today: what is it that’s special about the babies who are dying of AIDS? What about the babies dying of diarrhea, of malaria, of measles. . . . Why aren’t they special also? Why is it that we, in this resource-­constrained environment, should prioritize AIDS above all these other tremendously important vital ways to save lives? This discussion, hosted by the World Bank, The Lancet, and USAID/ PEPFAR, was the final installment in a series of debates about how to best respond to the HIV pandemic. While the previous six discussions were focused on improving HIV programs, this final debate questioned whether continuing to invest in HIV programs was sound health policy. In addition to Over, Jeffrey Sachs, another development economist; Roger England, a health systems analyst; and Michel Sidibé, the head of UN138

Conclusion  ·  139

AIDS, participated in the panel. They debated the following proposition: “Continued AIDS investments by donors and governments is a sound investment, even in a resource-­constrained environment.” When the debate’s moderator, Richard Horton, editor-­in-­chief of The Lancet, asked the more than 150 people in the audience which side they were on, the vast majority raised their hands in support of the proposition. When a few hands were raised in opposition, Horton joked, “You are very brave to put your hands up. The Bank has a special room for people like you.” The four panelists—­two for and two against—­were preceded, as one panelist noted, by four speakers who also supported the proposition; each had recounted the successes of HIV programming they had experienced, implying that they believed continued investment in HIV was, indeed, sound. As the debate continued, punctuated by sobering statistics, poignant stories, as well as jokes and laughter, one thing became clear: both sides could make a compelling case on the basis of human rights and social justice. The proposition’s supporters claimed that they had seen HIV/ AIDS treatment improve other aspects of care, while AIDS programs had raised the visibility of health as a human rights issue, which had cut across all kinds of social programming. The opponents pointed to the relative burden of disease to the cost ratio of HIV/AIDS interventions, and the lacunae in other forms of care that the heavy AIDS programming burden produced. They also deftly critiqued the “aid colonialism” that appeared to coalesce around HIV/AIDS; governments were forced to comply with donor priorities that did not necessarily match their own. But only one position in support of the proposition was buttressed by what had become a multibillion-­dollar industry, and only one carried the affective weight and collective memory of an AIDS epidemic that killed—­and continues to kill—­people in their most productive years. Even as funding for poverty-­related issues has seen an overall decline, the HIV/AIDS epidemic continues to “enjoy” its exceptional status, with a dramatic increase in money for HIV/AIDS interventions in the past decade. It has also produced paradoxical forms of privilege, in which HIV-­ positive individuals have a better chance of receiving support services—­ and surviving—­than many people who do not. Although the global health network and local institutions have established support groups and other forms of assistance, a distinctly anti-­biosocial formation has emerged alongside these social movements. This formation, I have argued, threatens

140  · Conclusion

the health and well-­being of the multitudes of people who are not HIV-­positive. As Lawson writes, “Marginalizing care furthers the myth that our successes are achieved as autonomous individuals and, as such, we have no responsibility to share the fruits of our success with others or to dedicate public resources to the work of care. The marginalization of care allows ideologies of the ‘autonomous self-­made man’ to go unchallenged” (Lawson 2007, 3). HIV-­positive individuals who are involved in the support groups and counseling services grapple with the balance of care and self-­ sufficiency in daily practice. Individuals are responsible for caring for themselves and protecting others from the disease through particular modes of disclosure and their performances of vulnerability and self-­ sufficiency. More broadly, individuals are responsible for caring for the state, and they expect protection from the government in return. Thus, individuals, the state, and the global institutions that support them are embroiled in relationships of reciprocity, which are often couched in terms of familial responsibility and obligation. All too often, global institutions and the national government do not hold up their ends of this relationship. In 2002, Sierra Leone emerged from a civil war characterized by widespread sexual violence and massive displacement. Numerous social interventions—­notably those promoting trauma recovery, reconciliation, and skills training—­were implemented in post-­conflict Sierra Leone to establish new ethical, moral, and social orders in the country. These interventions, described elsewhere as “technologies of repair,” are rooted in the notion that war annihilated moral states (Wagner 2008). They are financed primarily by Western donors and implemented by a host of international, national, and local NGOs with diverse agendas. These projects reflected the institutional ethics of self-­regulation and moral reconstitution that defined how vertically funded HIV prevention, treatment, care, and support efforts would be implemented. Individual responsibility and social repair were also central to how both care providers and beneficiaries interpreted the aims of HIV/AIDS programs. The agendas for these programs were built on modes of confession, similar to those accompanying truth-­telling and reconciliation programs. Program-­prescribed identities that emerged during the war and its aftermath—­“HIV-­positive” “former combatant,” “vulnerable woman,” “bush wife,” and “traumatized,” among others—­were influential foundations for HIV-­infected identities.

Conclusion  ·  141

Support groups for HIV-­positive persons in Freetown—­as in other places throughout the world—­were initiated by the government and by nongovernmental organizations to foster solidarity, mutual support, and self-­help among those living with HIV/AIDS. With a prevalence of only 1.5 percent, HIV in Sierra Leone is epidemiologically insignificant compared to other diseases. Nevertheless, Sierra Leone’s HIV problem has captured transnational imaginaries, resulting in disproportionate and separate funding streams that have marginalized HIV from other systems of care. These forms of exceptionalism have resulted in distinctly anti-­biosocial formations around HIV status, or as Kalofonos has called it in Mozambique, biosociopathy (Kalofonos 2010). Competition for the resources, and even prestige, produces novel forms of exclusion and compels HIV-­positive people—­or, at least, the poor ones—­to perform authentic vulnerability and to render their conditions visible, all while balancing these program requirements with a simultaneous need to demonstrate self-­sufficiency. HIV-­positive individuals must constantly evaluate the potential benefits and problems that could arise from how well (or how poorly) they manage their illness. In the book, I described how HIV was an object of social and cultural analysis in Freetown, Sierra Leone, and the role these analyses played in framing the problem of the disease in developing countries. More specifically, I addressed how concepts like vulnerability and exceptionalism have shaped HIV prevention and treatment work. Ironically, whereas these concepts were once the tools of social justice and political activism, their deployment within the public health sphere has emptied them of their meaning, practical application, and significance. Even though meaning is lost during the depoliticizing process of program design, these concepts do not remain void of significance once enacted (or to use the NGO term, implemented) at the local level. The people to whom these concepts and categories are to be applied also reimagine, rework, and deploy them self-­referentially, in ways that are often anticipated—­but not openly acknowledged—­in program design. Notably, some of my informants relied on the idea of the epidemiological uniqueness of AIDS to emphasize the uniqueness of their own suffering—­suffering that set them apart from other poor and marginalized groups. They also relied on specific NGO narratives to gain access to food, stipends, and powerful individuals. As I have explained, ideas about Sierra Leone’s HIV epidemic are rooted in various ways of “knowing about” the country’s civil war and

142  · Conclusion

HIV. For NGOs and the government, war was at the center of their belief that Sierra Leoneans were experiencing an increasing vulnerability to HIV, although statistical analyses suggested this was not the case. These two “truths”—­the on-­the-­ground and sensorial experience versus the epidemiological, population-­based approach—­were opposed to each other in the global health discourse. Privileging of one way of knowing over the other, at first glance, appears to sustain the conditions of marginalization and exclusion by increasing the funding of HIV-­specific programs to the exclusion of others. However, when interpreted on the ground, as I showed in chapter 2 and chapter 5, the uniqueness of the disease was held up as a signifier of unique suffering, while it was also the means through which HIV-­positive individuals could invite onlookers to witness their unique vulnerabilities in comparison to others. In addition to providing a social support network for HIV-­positive people, HIV support associations and testing centers in Freetown, Sierra Leone, focused on regulating and shaping self-­conduct, self-­presentation, and sexual subjectivities. As I described in chapter 3 and chapter 4, role-­ play exercises and facilitated discussions during regular meetings and events provided crucial methods for HIV-­positive people to learn how to be HIV-­positive. The discussions and responses to these techniques revealed how members embraced or rejected the content and implications of these lessons, challenging and reaffirming the role of HIV in their everyday lives. In particular, HIV-­positive people with whom I interacted deftly used the vocabulary and grammar of global health discourse around HIV treatment. Specifically, they talked about disclosure, stigma, positive living, and empowerment to alleviate the suffering of poor people with the disease, as well as to invest in the moral economy of HIV care. To have successfully deployed these terms was evidence of one’s advancement beyond novice HIV-­positivity and one’s heightened sense of responsibility, duty, and membership related to HIV status. Many of the people I interviewed also described the changes in self-­perception, affective states, and personal relationships that emerged from their participation in HIV support groups. James, for example, explained how he changed his strategies for seeking intimate partners, while others shared that they transformed their strategies for disclosure and concealment. Yet others, like Nafisatu, and the so-­called high-­profile clients, evaded or consciously rejected aspects of programs that did not fit their individual perspectives or agendas.

Conclusion  ·  143

Ultimately, I argued, the aggregate of HIV programming techniques has given rise to new forms of social relations based on biological status and further entrenched AIDS as having exceptional status. Unlike previous iterations of vertical programs (such as malaria elimination and vaccination campaigns), HIV programs focused not just on behavior modification, but rather on a holistic modification of the self. Because the programs focus on intimate aspects of their targets’ lives—­from how they choose sexual partners, to what they eat and drink, to how they present their illness in relation to their identities—­they play a unique role in shaping subjectivities. The work of surfacing one’s HIV status—­t hrough disclosure and “timely appearances” at the requisite workshops and meetings—­ reaches beyond the realm of interpersonal relationships. HIV-­positive people come to understand their relationship to the state, to transnational health agendas, and to each other in ways that may not manifest themselves in tuberculosis, family planning, or malaria programs. Individuals learned how to become HIV-­positive and to navigate a variety of social and political terrains through their HIV status. As I suggested in chapter 3 and chapter 4, some HIV-­positive people make specific claims of suffering to the local institutions that support them, as well as to the state and the international institutions that support government endeavors. For those who are poor and HIV-­positive, HIV is an idiom deployed to alert their audience to the unique nature of their suffering. This uniqueness stems from the virus’s relative epidemiological insignificance; clinical anomalies; and HIV’s role as a modifier of normal, everyday suffering of ordinary Sierra Leoneans. Those who effectively articulated their needs and forged a positive living identity became the privileged subset of people living with HIV/AIDS, and their very survival was premised on the designation of “HIV-­positive.” The failure of the state to “care” was powerfully articulated both within and outside of HIV support groups. One outcome of the state’s perceived failure was an additional set of duties for Sierra Leoneans. As I explained in chapter 5, staff members, like Irene, expressed the need for Sierra Leoneans to care about the welfare of their country and to act responsibly in their sexual lives in service of the country’s economic development and social progress. Moreover, the discourses that link Sierra Leone’s development, governance, and HIV are profoundly gendered. The moral failures of the state during war were often articulated in terms of how they affected gender norms and heterosexual relationships. In

144  · Conclusion

turn, ideas about regulating sexual conduct, so common in the discourse around conflict-­related HIV transmission, were conflated with ideas about rebuilding the nation. By warning people about HIV or suggesting ways to manage illness or prevent transmission, HIV support staff performed the duty of caring for and protecting the state. This responsibility was particularly salient in the context of postwar rebuilding and development. Referring to Uganda’s success in reducing HIV prevalence and comparing this success to HIV/AIDS interventions in southern Africa, observers of the HIV pandemic in Africa—­like Epstein and Green—­have identified how locally initiated solutions can bring about sustained change in sexual norms; usher in new, comprehensive treatment models; and reduce AIDS-­related stigma and denial (Epstein 2007; Green et al. 2006; Green and Farmer 2003). They argue that these cultural shifts resulted from grassroots knowledge and efforts, supported through transnational and national governmental entities. When these observations are taken together with those from others who have examined the HIV epidemic from historical, political, and economic perspectives, it is clear that the relatively unsuccessful efforts in southern Africa—­which also had broad-­ based social movements and provided antiretroviral therapies early on—­ may have resulted from historically constituted and geopolitical factors. These factors—­such as complex migrant labor systems, earlier spread of certain sexually transmitted infections, colonial rule, and legacies of apartheid—­a lso affect transmission. Such analyses suggest that we must simultaneously focus on the local and the transnational to find the way forward in low-­prevalence sites like Sierra Leone. Although antiretroviral therapy, nutritional aid, and social support are significant and welcomed responses to the suffering of HIV-­ positive individuals in Sierra Leone, the disease’s exceptional status provides little comfort to the numerous others who do not suffer from the disease, but who would benefit immensely from well-­trained primary health care staff, high-­tech equipment and therapies, and access to affordable food. This is not to say that such critical efforts are not already underway. Strengthening health systems and rebalancing the distribution of funding is currently on the global health radar. However, these efforts have been stymied by the 2008 financial crisis and still pale in comparison to those incorporating or focusing on HIV. As Mead Over noted during the 2012 AIDS conference debate, vertical programs like HIV—­and increas-

Conclusion  ·  145

ingly those focused on malaria and tuberculosis—­can create imbalances in health priorities and actual provision of health care. Moreover, as the journalist in chapter 2 noted, providing exceptional care for HIV to the exclusion of other diseases may serve to reinforce the stigma that proponents of these exceptional programs claim to combat. They also produce exceptional forms of exclusion and privilege based on a diagnosis that affects a very limited number of people. For me—­and for the many others who have experienced this painful reality in other parts of the world—­ this is unacceptable. The fact that vertical programs can create new and reproduce existing imbalances and inequities is not new information (Mills 2005; Oliveira-­Cruz et al. 2003); however, my experiences both as a practitioner in and a critical observer of global health programs suggests that past mistakes are often overlooked in the midst of good intentions. At the end of the debate at the AIDS 2012 meeting, moderator Richard Horton asked for another show of hands to see if any audience members had changed their minds about the exceptional nature of HIV/AIDS. Many more hands shot up than he expected. He declared wryly, “As an impartial moderator”—­a moniker that gets a chuckle from the UNAIDS head, Michel Sidibé—­“I see a small, but nevertheless measurable transfer of votes to those against the proposition.” Perhaps incremental changes like these, along with other indicators of policy change (as in the case of health systems strengthening initiatives), show promise for how global health will continue its work in this age of the HIV/AIDS pandemic. The findings in this book suggest the role that HIV care, treatment, and support are to play in future global health endeavors needs to be carefully considered—­and its exceptional status reconsidered—­without losing sight of the immense benefits and successes that have accompanied an intensive focus on HIV. To do so would require an honest assessment of how these programs operate in places where HIV is not the most urgent primary concern, with the express purpose of improving the overall quality of comprehensive health care for those who seek it.

This page intentionally left blank

Acknowledgments

Many of the ideas here came out of conversations with numerous interlocutors in Sierra Leone, the United States, and other locales where I have worked over the years. These individuals continue to push my thinking about global health and its implications for people’s lives. Any errors that one sees in these texts, however, are my own. In Sierra Leone, I owe my sincerest thanks to the individuals who invited me into their organizations and who encouraged their members to embrace me as an honorary member. I would especially like to thank the leaders and members of three HIV/AIDS support associations, which I have called the AIDS Support Association (ASA), the Community Health Program (CHP), and Families United. Members’ and leaders’ discussions with me were crucial to my understanding how the programs affect their daily lives. Confidentiality prohibits me from naming them here, but I am eternally grateful for their willingness to talk to me about their experiences inside and outside the clinic. Among the important institutions that welcomed me, my technical support, and my critiques were UNAIDS, the 34 Military Hospital, Connaught Hospital, and the National AIDS Secretariat. In particular, I thank the former UNAIDS country director, Leopold Zekeng, and the former head of the National AIDS Secretariat, Brima Kargbo. Other staff members in these institutions played an important role in helping me to understand the challenges of their work, the way these institutions operated, and their professional and personal experiences. Again, confidentiality prevents me from writing their names here, but I hope that they recognize their contributions and insights and don’t judge me too harshly for any limitations in my expression of those contributions. I made some good friends in Freetown. Omalara Leah Balogun, in particular, was a wonderful housemate and provided invaluable research assistance at the beginning of fieldwork. Her brother, Ademola, another of my housemates, provided much-­needed comic relief. If not for him, I 147

148  · Acknowledgments

might not have indulged my love for football—­and in particular, for Arsenal FC. For their help in sorting out everyday matters, I would like to thank: Mohammed Jalloh, who was a great friend and provided tea and roadside assistance when I needed it most; Mariatu Jalloh, who served warm meals and a sister-­talk when things were looking bleak; and David Gatare, who offered frank advice about working in Sierra Leone after I was a few years out of practice. For help with lodging, I am grateful to Saio and Kadiatu Kamara and Gary Walker, Obai Taylor-­Kamara, Ina Bonsu, and Madam Lois Taylor-­Kamara. A special thanks to my mentors at Harvard, whose scholarship and counsel can be seen clearly in this text: Byron Good and Mary-­Jo DelVecchio Good; Arthur Kleinman; Michael Herzfeld; and Sally Falk Moore. A special line of thanks goes to Rosalind Shaw. She has challenged me to engage the literature about Sierra Leone critically, and without her early input, I certainly would not have been able to make some of the arguments I advance in the book. Her ability to draw connections between seemingly disparate pieces, as well as her eye for detail, has been invaluable in the writing process. The book also benefits from years of discussion with my peers in the anthropology graduate program there, as well as my comrades in the Friday Morning Seminar: Laurie Mcintosh; Anthony Shenoda; Felicity Aulino; Kwame Zulu Shabazz; Jesse Grayman; Ernesto Martinez; Sharon Abramowitz; Sarah Willen; Seth Hannah; and many others. At Dartmouth College, where I completed a postdoctoral fellowship in global health at the John Sloan Dickey Center for International Understanding, I was given the time and space to begin work on the manuscript. Additional words of gratitude are in order to the anthropology department at Dartmouth, which sponsored visiting scholar status when I extended my stay in Hanover. At the Institute for Advanced Study at the University of Minnesota, I completed a semester-­long fellowship with the Quadrant Program. There, scholars from a range of disciplines helped me to push my thinking about my work. In particular, I would like to thank Marcus Filipello, Rachel Schurman, Amy Kaminsky, Karen-­Sue Taussig, Christine Marran, and the entire cohort of faculty, graduate students, and independent scholars who provided a wonderful intellectual environment as I was revising parts of this book. At the University of Minnesota Press, Jason Weidemann, Doug Armato, and Anne Carter were particularly encouraging and supportive of this book in its early

Acknowledgments  ·  149

stages. At Oberlin College, Baron Pineda welcomed me to the anthropology department, where I taught an advanced undergraduate seminar on global health. The students in that seminar read a draft of the book, providing the kinds of insights that I’ve come to respect and admire from my hopeful and optimistic students (and future public health professionals). The expansive networks that have developed around the anthropology of HIV/AIDS, global health, and science and technology studies have also broadened my network of colleagues and friends. Thurka Sangaramoorthy and Jennifer Liu, in particular, have been wonderful writing companions throughout the years, and I look forward to many more fruitful writing collaborations. Ted Gideonse and Chanda Meek were generous with their feedback on various versions of the chapters here. I would also like to thank Ippy Kalofonos for his careful reading of seminal drafts of the papers that would later become chapters, and Vinh-­Kim Nguyen, who first suggested connections between my work and his. Although he would probably never take credit for having been so influential in my trajectory, I thank Paul Farmer, without whom I might not have considered pursuing a degree in medical anthropology. Our early e-­mail correspondence, which continued for years, had me rethinking the kind of transformations possible within the fields of medical anthropology and global health. Similarly, Lakshmi Goparaju’s example also encouraged me to consider graduate work in anthropology. At Brown, colleagues attended talks and seminars and provided excellent counsel as I finished work on the book. The mechanics and psychology of finishing a book require another sort of support system. For editing assistance, I thank Roxanne Willis, whose careful eye, encouragement, and patience have been remarkable. Peter Bendix has been a partner in the field and back in the United States. From the very first day we met, he has shared his experiences of working in medicine and public health in West Africa, and later, in Latin America and Mozambique. Although it was a near miss, Peter was there to greet our wee Salma when she made her first appearance. Other family members, especially during those early months of Salma’s life, have been essential throughout this process. My parents, Almateen and Joe, my brother Joey, his wife Bianca, and my niece and nephew, Brianna and Jeremy, were constant sources of support. Gerry Bendix, Ursula Bendix, and Kathleen Liebenow provided additional backup care when needed. I have presented parts of this work and received substantive feedback in the following conference panels, seminars, and speaker series: the NIMH

150  · Acknowledgments

Cultural Psychiatry and Medical Anthropology Friday Morning Seminar at Harvard University; two panels at the American Anthropological Association annual meetings; the Society for Medical Anthropology meeting at Yale in 2009; the International Association for the Study of Sexuality and Culture; the African Studies Association meetings; ASSHH—­ Association for the Social Sciences and Humanities in HIV; University of Texas at Austin Department of African and African Diaspora Studies; Colgate University; Boston University School of Public Health; and Dartmouth College. Fieldwork for this research was supported by a T32 training grant (NIAID AI 007433) from the National Institute of Allergy and Infectious Diseases at the National Institutes of Health. Additional funding came from the Department of Anthropology, Committee for African Studies, the Center for International Development, and the Center for Population and Development Studies, Cora DuBois Fellowship for Dissertation Completion, all at Harvard.

Notes

Introduction 1. Sentinel surveillance, usually taken from antenatal clinics testing data, often overestimates HIV prevalence in certain populations. Still, most of these figures have likely been precise, if not accurate, over the course of the epidemic in Sierra Leone (Misinguzi et al. 2009; Montana et al. 2008; Rice et al. 2007). 2. The diseases and conditions I encountered among coworkers, friends, neighbors, and hospital patients included typhoid and other diarrheal diseases, malaria, tuberculosis, hepatitis, chlamydia, syphilis, complications during childbirth, hernias, diabetes, and hypertension. The list varied by region. When I lived in Kenema, for example, Lassa fever—­rare outside of Equatorial West and Central Africa—­had nearly killed a coworker and was responsible for the death of another coworker’s child. Lassa fever was also common in the refugee camps, resulting in massive rat-­k illing campaigns and efforts to encourage camp residents to protect water and food sources. During my stay, even one of the leading experts in treating Lassa succumbed to the disease after being infected by needle. 3. The figure of $14 million seems appallingly low for total health expenditures. Given the sad state of health budgeting for the post-­conflict nation, however, the $8 million spent on HIV prevention probably reflects a proportional reality, dictated by (national?) and international restrictions on how social spending is allocated, and rooted in the on-­the-­ground reality in which each district health system was at the time managed by an international NGO. 4. The development imaginary refers to a common set of values, beliefs, institutions, and symbols within the field(s) of international development. Although the name suggests an “unreal” dimension of development aid, the active creation and effects of the development imaginary are very real. The material significance of the development imaginary is due in part to its role in representing the beneficiaries of aid, the work that various institutions perform in the name of development, and in how it structures the relationships of NGOs, donors, governments, and the people who work with and within these institutions. 5. I also suspect that shame among mostly liberal-­leaning and well-­intentioned development practitioners was, in part, responsible for this funding increase. 151

152 · Notes to Introduction

The work of Paul Farmer and other progressive, critical social scientists makes a compelling case that the public health focus on cost-­effectiveness and low-­cost technologies for poor people was yet another form of violence being perpetrated against them, a “structural violence” in which the undervaluing of poor people’s lives was explicit and central. Put more bluntly: if those who claimed to want to help the poor did not back an agenda advocating the highest standard of care for the poorest, they were complicit in the subjugation of poor people (Kidder 2003, 40). While these challenges were unorthodox at the time, they became part of a mainstream movement within public health. Since 2009, funding has been threatened by the enduring global economic crisis and efforts to broaden health agendas have been stymied. As the economy improves, however, efforts to focus on health systems have been rekindled. 6. These unintended negative consequences account for the recently renewed interest in health systems strengthening and primary health care models. The last round of Global Fund money had been focused on health systems strengthening; however, with the global economic crisis, the funding round was postponed. 7. In retrospect, I should have considered my words more carefully. The Freetown I had described to Christiana was very different from Freetown in 2007, when water shortages, extended power outages, and increases in the price of rice made life in the city, once again, incredibly difficult. 8. Kabbah seemed popular, but his vice president, Solomon Berewa, did not benefit from Kabbah’s popularity when he launched his campaign for Sierra Leone’s presidency. In fact, many people with whom I talked felt that Berewa lacked the moral fortitude that Kabbah possessed, and that if Kabbah had been able to run for president again, he could have won. Yet, Kabbah’s endorsement of Berewa, and subsequent disregard for it, seem to point to some dissatisfaction about the gains of the Kabbah’s presidency. 9. Such redistribution of power has been more thoroughly outlined in Bayart’s “politics of the belly,” and “big man” clientelism, as described by Chabal and Daloz (Bayart 1993; Chabal and Daloz 1999; Schatzberg 2001). 10. Biehl introduced “biomedical citizenship” to this conversation, highlighting the role of activism by people living with AIDS and their claims on the state resources. Having conducted his work in Brazil, he observes that “economic globalization does not necessarily limit states.” I would also emphasize that the global does not eclipse the local or the national; rather, globalization adds new layers of responsibility and visibility for negotiation by state and local actors (Biehl 2004; Biehl 2007). 11. The argument to which I am referring here is that the economic marginalization of young women from well-­paying sectors has made sex work the only viable option for securing a livelihood.

Notes to Chapter 1  ·  153

1. The HIV Industry in Postwar Sierra Leone 1. Results frameworks and “log frames” are tools used to design, monitor, and evaluate a range of international development projects. They are tailored to results-­based management approaches. Both concepts were developed by the United States Agency for International Development (USAID). The former has been used since the 1990s and the latter has been used since the late 1960s. 2. The complexities of these conflict and post-­conflict situations were not limited to the programs themselves. The mere presence of these mobile institutions caused local social, cultural, and economic dynamics to shift. Local economies were built up around refugee camps and thrived on the bartering and selling of imported goods and emergency aid. In these markets, one could find Japanese tuna, American wheat, and Burmese rice for sale next to cassava leaf, country rice, and sweet potatoes. Women farmers had taken to growing coriander, ginger, basil, and mint—­herbs not commonly found in Sierra Leonean cuisine—­to cater to East African, South Asian, and North American tastes. Businesses servicing UN peacekeepers and expatriate aid workers from all over the globe—­ including eastern Europe, South Asia, and East and Central Africa—­built and sustained a client base by providing relatively inexpensive imported beers and liquors; good music; and “European-­style” dishes, including fried chicken, beef stew, and fish and chips. 3. Although the phrase “post-­conflict development” first appeared in the practitioner literature in the mid-­to-­early 1990s, much of the scholarly and professional writing about what post-­conflict development entails was done in the early 2000s. Humanitarian aid organizations led the charge for post-­conflict activities to be focused primarily on development objectives, and less on so-­called political objectives like democratization and stabilization (Barakat and Zyck 2009, 4). 4. Used cars usually came with Sierra Leoneans returning from abroad, were sent to relatives in Sierra Leone for private or commercial use, or were purchased through remittances for personal use or resale. 5. In its heyday, the Pajero was a “big man’s” car, one that signified high social standing, and the name “Pajero” was even used to describe powerful men and women. By the time I owned this car, however, the seats were coated with dust, the sunroof had been sealed shut to keep out the torrential rains (it leaked anyway), and the interior fabric had begun to droop. 6. At the time, most of the vibrant nightlife occurred on the West End of Freetown in Aberdeen, Lumley, and Congo Cross; in central Freetown around St. John’s Roundabout; and in the city proper. Later in my fieldwork, a few more clubs opened on the East End, but it was still common to see women and men crowding into taxis and poda podas from the East End to go to the bars and clubs on the West End.

154 · Notes to Chapter 1

7. These data were gathered from the monitoring and evaluation staff at the National AIDS Secretariat. 8. This reasoning resonates with data presented by Castro and Farmer (2005), who suggest that HIV stigma is reduced when antiretrovirals are readily available. 9. For as long as this policy existed, activists worked to change the discriminatory laws around HIV status and immigration. Advocacy for abolishing this policy was largely successful in the 2000s, with the U.S. decision to change its law being one of the most significant successes. 10. Rice is the staple food in Sierra Leone, and the introduction of bulgur wheat through these programs has been the source of tension between providers and clients. Recipients of the bulgur wheat had several complaints. Most simply, they did not enjoy the taste as much. People also said they had difficulty selling the grain for prices as high as those they could get for rice. Some even claimed that bulgur caused diarrhea.

2. Exceptional Life, Exceptional Suffering 1. HIV-­related discrimination was rarely reported in HIV support groups, suggesting that it did not exist on a large scale. Some people I interviewed chose not to tell family or friends because of fear of reprisal or judgment about their sexual activities. Others said that they had experienced discrimination when they had other (non-­HIV-­related) illnesses and feared that HIV would be no different. Others maintained that they never experienced discrimination because of HIV, but had experienced discrimination based on class or other social status. 2. Researchers are just beginning to examine whether stigma and discrimination might be produced through these exceptional programs (Jewkes 2006). 3. I use “calculus” here to highlight the role of calculation and counting as central to these concerns. In the mathematical sense, calculus involves studying limits, change, functions, and the infinitesimal; in a physiological sense, calculus refers to concretized blockages, which also characterize the hardening nature and effects of power in transnationally mediated social welfare programs. 4. I use nonenumerative instead of qualitative as a reminder that not all nonenumerative accounts are qualitative (or in-­depth) evaluations of an aspect of social life or inquiry. 5. From the perspective of the anthropologist and of many local communities that regularly deal with NGO representatives, however, these accounts are often thin descriptions based more on stereotypes and NGO presumptions of African vulnerability and wounded subjects, rather than on a deep, extended engagement with local meanings and interpretations of social life. 6. The NGO-­government-­multilateral schematic I employed here is only one of many typologies that could be used to discuss the tensions arising around modes

Notes to Chapter 3  ·  155

of representing suffering and addressing community needs for care and support. I use it here because it resonates not only with my experiences in Sierra Leone, but also during my years of working in monitoring, evaluation, and research for global health and development programs. Over the past ten to fifteen years, NGOs have worked to demonstrate the effectiveness of their programs, and whether intended or not, indicators of program effectiveness have tended toward the numerical. At the same time, advocates within NGOs realize that program-­inspired social change and impacts have a qualitative component. Observing such changes often requires extensive narrative accounting of changes witnessed by community members and program staff “on the ground.” Governments, unlike NGOs, have fewer legitimate qualitative tools with which to measure their success in the biopolitical projects of governing, monitoring, and caring for their citizens. 7. I use the word “appeared” because some debates—­a lbeit less publicized—­ have taken place within community organizations, even as these same organizations attempt to “mainstream” HIV/AIDS components into their programs in compliance with donors’ demands. HIV exceptionalism has also been criticized by public health advocates and by people suffering from “neglected” but prevalent diseases like sickle cell anemia (Fullwiley 2004). 8. The CDC survey (which included blood samples and behavioral information) covered accessible areas that included 79 percent of the country’s adult population. Although sexual violence was reportedly high in Sierra Leone, the relatively low prevalence among prewar populations, peacekeeping forces, and paramilitaries might have been sufficient to prevent a massive spread of HIV infection during the war (Kaiser et al. 2002; for additional information on sampling techniques used in both the 2002 and 2006 studies, see Kaiser et al. 2002 and the 2006 Ghana report available from the Government of Sierra Leone).

3. The Imperative to Talk 1. Kuyateh also owned and managed a for-­profit laboratory service that received a contract to perform HIV tests and all the other tests required before beginning antiretroviral treatment. 2. The irony here is that funding cycles and funding amounts do not allow for extended, more complex training, and her organization is beholden to such funding cycles and amounts. The critique, it seems, would be better directed at donors who set the agenda for the types of income-­generation activities made available to program beneficiaries. 3. To have a “warm heart” is to be under psychological distress, which manifests as anger, anxiety, or deep sadness. Various forms of therapy exist to cool warm hearts, but talk therapy was promoted as the legitimate means for “cooling” warm hearts in the aftermath of the war.

156 · Notes to Chapter 3

4. Maman et al. (2003) and Obermeyer et al. (2011) also identify an individual versus social distinction in the literature, suggesting that this disconnect is recognized by some experts located within the centers.

4. Positive Living 1. For example, when you have spent time with your mother as an adult, you are said to have sok bobi (literally, “sucked breast”; figuratively, returned to the warm fold of the parent’s love). 2. The Global Fund for AIDS, Tuberculosis, and Malaria has provided funding to Sierra Leone’s National AIDS Secretariat to support antiretroviral treatment for those who have CD4 counts less than 250 or AIDS-­defining illnesses. (There were conversations about how to change this guideline while I was doing fieldwork.) A significant amount of Global Fund money is directed to prevention, support for ARV treatment, personnel training, and support for member associations. One of the realities that those who receive support understand is that support will eventually be withdrawn from these types of programs, and they will again be left without additional sources of income, lifesaving drugs, and the other perks that result from their involvement with these groups. 3. Michael Herzfeld (2004) makes the case that these relationships are premised in notions of familism, but these are often only acknowledged by citizens’ nations. For the government or donors like Global Fund to acknowledge their role as the “parents” in the family would be to accept their obligation to citizens (Jackson 2007). 4. Thanks to Joao Biehl for suggesting this observation.

5. For Love of Country 1. There is an implicit assumption that the West has solved its HIV problem because it provides technical assistance and funding for HIV in the developing world, although Western countries are actually experiencing rising HIV rates among marginal groups. 2. In 2001, Nelson Mandela made what appeared to be “an implicit dig at his successor Thabo Mbeki . . . [after praising] world leaders who actively sought to combat AIDS, particularly Ugandan President Yoweri Museveni. ‘Countries that have succeeded in bringing down the levels of AIDS are those where the president of the country takes the lead,’ Mandela told reporters on December 1.” (Uganda’s Daily Monitor, December 1, 2001). 3. These demands to see records and to scrutinize drugstores seemed to take a toll on the Sierra Leonean managers. At a lunch meeting during one of these visits, a U.S.-­based consultant interrogated the staff responsible for managing the drug

NOTES TO CHAPTER 5  ·  157

supply. He asked them about their methods, took detailed notes, and pushed his preferred itinerary. Annoyed by the visitor’s questions and requests, the staff members grumbled about the man when he went to the bathroom. They switched from English to Krio and declared, “White people are crazy [Wetman krehs]. [Do] they think that we can just drop everything to meet their demands?” 4. This is not to say that there are not independent evaluations that serve as assessments of failure or ineffectiveness. These evaluations, however, often operate using the logics of the programs themselves, spinning failures or mistakes into “lessons learned” or “best practices.” 5. As established in the earlier chapters, rice is the staple food in Sierra Leone, and the introduction of bulgur wheat through these programs has been the source of tension between providers and clients. Some of the recipients have difficulty selling the grain because of its association with food aid during the war, and because it is not as socially valued as rice. 6. The President’s Emergency Plan for AIDS Relief (PEPFAR) is a program directed at improving HIV care in developing countries, primarily in Africa. Because of the complicated reporting structures and distribution mechanisms, the program relies less on African governments to distribute goods. Instead, it uses its own parallel structures for distribution.

This page intentionally left blank

Bibliography

Allen, Tim, and Suzette Heald. 2004. “HIV/AIDS Policy in Africa: What Has Worked in Uganda and What Has Failed in Botswana?” Journal of International Development 16, no. 8: 1141–­54. Alonzo, Angelo A., and Nancy R. Reynolds. 1995. “Stigma, HIV, and AIDS: An Exploration and Elaboration of a Stigma Trajectory.” Social Science & Medicine 41, no. 3: 303–­15. Annan, Jeannie, Christopher Blattman, Khristopher Carlson, and Dyan Mazurana. 2008. “The State of Female Youth in Northern Uganda: Findings from the Survey of War Affected Youth (SWAY).” Available from Tufts Digital Library, Digital Collections and Archives, Medford, Mass. http://hdl.han​ dle.net/10427/71115. (Accessed July 16, 2014.) Aretxaga, Begona. 2003. “Maddening States.” Annual Review of Anthropology 32: 393–­410. Ba, Oumar, Christopher O’Regan, Jean Nachega, Curtis Cooper, Aranka Anema, Beth Rachlis, and Edward J. Mills. 2008. “HIV/AIDS in African Militaries: An Ecological Analysis.” Medicine, Conflict and Survival 24, no. 2: 88–­100. Baker, Bruce, and Roy May. 2004. “Reconstructing Sierra Leone.” Commonwealth and Comparative Politics 42, no. 1: 35–­60. ———. 2006. “A Sustainable Peace? Sierra Leone.” In Ending Africa’s Wars: Progressing to Peace, ed. Oliver Furley, 221–­38. Aldershot, U.K. and Burlington, Vt.: Ashgate Publishing. Barakat, Sultan, and Steven A. Zyck. 2009. “The Evolution of Post-­Conflict Recovery.” Third World Quarterly 30, no. 6: 1069–­86. Bartholomew, L. Kay, Guy S. Parcel, Gerjo Kok, Nell H. Gottlieb, and María E. Fernández. 2011. Planning Health Promotion Programs: An Intervention Mapping Approach. San Francisco: John Wiley & Sons. Bate, Roger. 2006. “Access to Essential Medical Intervention and Mission Creep in Aid Agencies.” Testimony, Presidential Advisory Council on HIV/AIDS (PACHA). Bayart, Jean-­François. 1993. The State in Africa: The Politics of the Belly. New York: Longman. 159

160 · Bibliography

Becker, Joseph U., Christian Theodosis, and Rick Kulkarni. 2008. “HIV/AIDS, Conflict, and Security in Africa: Rethinking Relationships.” Journal of the International AIDS Society 11, no. 1: 3. Biehl, João. 2004. “The Activist State: Global Pharmaceuticals, AIDS, and Citizenship in Brazil.” Social Text 22, no. 3: 105–­32. ———. 2007. “Pharmaceuticalization: AIDS Treatment and Global Health Politics.” Anthropological Quarterly 80, no. 4: 1083–­126. Biehl, João, and Torben Eskerod. 2007. Will to Live: AIDS Therapies and the Politics of Survival. Princeton, N.J.: Princeton University Press. Biruk, Crystal. 2012. “Seeing Like a Research Project: Producing ‘High-­Quality Data’ in AIDS Research in Malawi.” Medical Anthropology 31, no. 4: 347–­66. Bledsoe, Caroline. 1990. “No Success without Struggle: Social Mobility and Hardship for Foster Children in Sierra Leone.” Man 25: 70–­88. ———. 1991. “The Politics of AIDS and Condoms for Stable Heterosexual Relations in Africa: Recent Evidence from the Local Print Media.” Disasters 15, no. 1: 1–­11. Bok, Sissela. 1989. Secrets: On the Ethics of Concealment and Revelation. New York: Vintage. Brighenti, Andrea. 2007. “Visibility: A Category for the Social Sciences.” Current Sociology 55, no. 3: 323–­42. ———. 2008. “Visual, Visible, Ethnographic.” Etnografia e Ricerca Qualitativa 1 (April): 91–­114. Brown, David, Katherine Shaver, and Alyssa Botelho. 2012. “Global AIDS Conference Rally Calls for Cheaper Medicines, More Funding.” Washington Post, July 22, 2012. Brown, Nik. 2005. “Shifting Tenses: Reconnecting Regimes of Truth to Regimes of Hope.” Configurations 13, no. 3: 331–­55. Brown, Wendy. 1995. States of Injury: Power and Freedom in Late Modernity. Princeton, N.J.: Princeton University Press. Butler, Anthony. 2005. “South Africa’s HIV/AIDS Policy, 1994–­2004: How Can It Be Explained?” African Affairs 104, no. 417: 591–­614. Caldwell, John, Pat Caldwell, and Pat Quiggen. 1989. “The Social Context of AIDS in Sub-­Saharan Africa.” Population and Development Review 15, no. 2: 185–­243. Campbell, Catherine. 2003. “Letting Them Die”: Why HIV/AIDS Prevention Programmes Fail. Bloomington: Indiana University Press. Cassidy, Rebecca. 2010. “Global Expectations and Local Practices: HIV Support Groups in the Gambia.” AIDS Care 22, no. S2: 1598–­1605. Castro, Arachu, and Paul Farmer. 2005. “Understanding and Addressing AIDS-­ Related Stigma: From Anthropological Theory to Clinical Practice.” American Journal of Public Health 95, no. 1: 53–­59.

Bibliography ·  161

Centers for Disease Control and Prevention. 2002. “Revised Guidelines for HIV Counselling, Testing and Referral.” MMWR Morbidity and Mortality Weekly Report 50: 1–­57. Chabal, Patrick, and Jean-­Pascal Daloz. 1999. Africa Works: Disorder as a Political Instrument. Bloomington: Indiana University Press. Coll, Steve. 2000. “The Other War.” The Washington Post Magazine 9: 8–­27. Colvin, Christopher J. 2004. “Ambivalence Narrations: Pursuing the Political through Traumatic Storytelling. PoLAR: Political and Legal Anthropology Review 27: 72–­89. ———. 2005. “Political Violence.” In A Companion to Psychological Anthropology: Modernity and Psychocultural Change, ed. Conerly Casey and Robert B. Edgerton, 453–­68. Malden, Mass.: Blackwell. Comaroff, Jean, and John L. Comaroff. 2006. “Figuring Crime: Quantifacts and the Production of the Un/Real.” Public Culture 18, no. 1: 209–­46. Cruikshank, Barbara. 1993. “Revolutions within: Self-­Government and Self-­ Esteem.” Economy and Society 22, no. 3: 327–­44. Das, Veena. 2001. “Stigma, Contagion, Defect: Issues in the Anthropology of Public Health.” Stigma and Global Health: Developing a Research Agenda. Paper presented at Stigma and Global Health: Developing a Research Agenda, Bethesda, Md., September 5–­7. Dawes, James. 1995. “Narrating Disease: AIDS, Consent, and the Ethics of Representation.” Social Text 43 (Autumn): 27–­44. De Certeau, Michel, and Steven Rendell. 1984. The Practice of Everyday Life. Berkeley: University of California Press. Delor, Francois, and Michel Hubert. 2000. “Revisiting the Concept of ‘Vulnerability.’” Social Science & Medicine 50, no. 11: 1557–­70. De Waal, Alexander. 2003. “How Will HIV/AIDS Transform African Governance?” African Affairs 102: 1–­23. DiClemente, Ralph, Richard Crosby, and Michelle Kegler, eds. 2009. Emerging Theories in Health Promotion Practice and Research. San Francisco: John Wiley & Sons. Dionne, Kim Yi. 2012. “Local Demand for a Global Intervention: Policy Priorities in the Time of AIDS.” World Development 40, no. 12: 2468–­77. Dionne, Kim Yi, Patrick Gerland, and Susan Watkins. 2011. “AIDS Exceptionalism: Another Constituency Heard From.” AIDS and Behavior 17, no. 3: 825–­31. Dixon-­Fyle, Mac, and Gibril Raschid Cole. 2006. New Perspectives on the Sierra Leone Krio. Bern: Peter Lang. Douglas, Mary. 1986. How Institutions Think. Syracuse, N.Y.: Syracuse University Press. Duffield, Mark R. 2001. Global Governance and the New Wars: The Merging of Development and Security. London: Zed Books.

162 · Bibliography

Dunham, Will. 2007. “Wars Don’t Fuel African HIV Crisis: Study.” Reuters. June 28, 2007. Eaton, David. 2006. “Diagnosing the Crisis in the Republic of Congo.” Africa 76, no. 1: 45–­69. Elbe, Stefan. 2002. “HIV/AIDS and the Changing Landscape of War in Africa.” International Security 27, no. 2: 159–­77. El-­Sadr, Wafaa M., and Elaine J. Abrams. 2007. “Scale-­Up of HIV Care and Treatment: Can It Transform Healthcare Services in Resource-­Limited Settings?” AIDS 21, Suppl. no. 5: S65–­S70. England, Roger. 2007a. “The Dangers of Disease Specific Programmes for Developing Countries.” BMJ 335: 565. ———. 2007b. “Are We Spending Too Much on HIV?” BMJ 334: 344. ———. 2008. “The Writing Is on the Wall for UNAIDS.” BMJ 336: 1072. Epstein, Helen. 2007. The Invisible Cure: Africa, the West, and the Fight Against AIDS. New York: Farrar, Straus and Giroux. Fanon, Frantz. 1963. The Wretched of the Earth. New York: Grove Press. Farmer, Paul. 1992. AIDS and Accusation: Haiti and the Geography of Blame. Berkeley: University of California Press. ———. 1999. Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press. Farmer, Paul, Margaret Connors, Janie Simmons, Avi Chomsky, Shelly Errington, Kenneth Fox, Jennifer Furin, Jim Yong Kim, Joe Rhatigan, and Haun Saussy. 1996. Women, Poverty, and AIDS: Sex, Drugs and Structural Violence. Monroe, Maine: Common Courage Press. Fassin, Didier. 2007. When Bodies Remember: Experiences and Politics of AIDS in South Africa. Berkeley: University of California Press. Fassin, Didier, and Helen Schneider. 2003. “The Politics of AIDS in South Africa: Beyond the Controversies.” BMJ 326, no. 7387: 495. Feldbaum, Harley, Kelley Lee, and Preeti Patel. 2006. “The National Security Implications of HIV/AIDS.” PloS Med 3, no. 6: e171. Feldman, Alan. 1997. “Violence and Vision: The Prosthetics and Aesthetics of Terror.” Public Culture 10, no. 1: 24–­60. Ferguson, James. 1992. “The Country and the City on the Copperbelt.” Cultural Anthropology 7, no. 1: 80–­92. ———. 1994. The Anti-­Politics Machine: “Development,” Depoliticization, and Bureaucratic Power in Lesotho. Minneapolis: University of Minnesota Press. Ferme, Mariane. 2001. The Underneath of Things: Violence, History, and the Everyday in Sierra Leone. Berkeley: University of California Press. Fofana, Lansana. 1999. “Sierra Leone: Conflict Spurs the Spread of HIV/AIDS.” Inter Press, July 5, 1999.

Bibliography ·  163

Foucault, Michel. 1982. “The Subject and Power.” Critical Inquiry 8, no. 4: 777–­95. Fullwiley, Duana. 2004. “Discriminate Biopower and Everyday Biopolitics: Views on Sickle Cell Testing in Dakar.” Medical Anthropology 23, no. 2: 157–­94. Fyfe, Christopher. 2006. “Akintola Wyse: Creator of the Krio Myth.” In New Perspectives on the Sierra Leone Krio, 25–­32. New York: Peter Lang. Gale, Lacey Andrews. 2008. “Beyond Men Pikin—­Improving Understanding of Post-­Conflict Child Fostering in Sierra Leone.” Feinstein International Center Briefing Paper. Gamson, Josh. 1989. “Silence, Death, and the Invisible Enemy: AIDS Activism and Social Movement Newness.” Social Problems: 351–­67. Geertz, Clifford. 1973. “The Politics of Meaning.” In The Interpretation of Cultures. New York: Basic Books. Gillespie, Stuart, Robert Greener, Alan Whiteside, and James Whitworth. 2007a. “Introduction: Investigating the Empirical Evidence for Understanding Vulnerability and the Association between Poverty, HIV Infection, and AIDS Impact.” AIDS 21, Suppl. no. 7: S1–­S4. Gillespie, Stuart, Suneetha Kadiyala, and Robert Greener. 2007b. “Is Poverty or Wealth Driving HIV Transmission?” AIDS 21, Suppl. no. 7: S5–­S16. Goerg, Odile. 1995. “Sierra Leonais, Créoles, Krio: La Dialectique de l’Identité.” Africa: Journal of the International African Institute 65, no. 1: 114–­32. Goffman, Erving. 1959. The Presentation of Self in Everyday Life. Garden City, N.Y.: Doubleday. Government of Sierra Leone. 2001. HIV/AIDS in Sierra Leone, Situation Analysis. Freetown: Government of Sierra Leone. ———. 2006. National Population Based HIV Seroprevalence Survey of Sierra Leone. Freetown: Government of Sierra Leone. Graeber, David. 2012. “Dead Zones of the Imagination: On Violence, Bureaucracy, and Interpretive Labor. The 2006 Malinowski Memorial Lecture.”  HAU: Journal of Ethnographic Theory 2, no. 2: 105–­28. Green, Edward, and Paul Farmer. 2003. “New Challenges to the AIDS Prevention Paradigm.” Anthropology News 44, no. 6: 5–­6. Green, Edward, Daniel Halperin, Vinand Nantulya, and Janice Hogle. 2006. “Uganda’s HIV Prevention Success: The Role of Sexual Behavior Change and the National Response.” AIDS and Behavior 10, no. 4: 335–­46. Hacking, Ian. 1982. “Biopower and the Avalanche of Printed Numbers.” Humanities in Society 5, no. 3: 279–­95. ———. 2006. “Making Up People: Clinical Classifications.” London Review of Books 28, no. 16: 23–­26. Halperin, Daniel. 2008. “Putting a Plague in Perspective.” New York Times, January 1, 2008, A17.

164 · Bibliography

Hansen, Thomas Blom, and Finn Stepputat. 2001. States of Imagination: Ethnographic Explorations of the Post-­Colonial State. Durham, N.C.: Duke University Press. Hastrup, Kirsten. 2005. “Social Anthropology: Towards Pragmatic Enlightenment?” Social Anthropology 13, no. 2: 133–­49. Henry, Doug. 2005. “Social Thought and Commentary: The Legacy of the Tank: The Violence of Peace.” Anthropological Quarterly 78, no. 2: 443–­56. ———. 2006. “Violence and the Body: Somatic Expressions of Trauma and Vulnerability during Conflict.” Medical Anthropology Quarterly 20, no. 3: 379–­98. Herzfeld, Michael. 2004. “Intimating Culture: Local Contexts and International Power.” In Off Stage, On Display: Intimacy and Ethnography in the Age of Public Culture, 317–­36. Stanford: Stanford University Press. Higgins, Jenny, Susie Hoffman, and Shari Dworkin. 2010. “Rethinking Gender, Heterosexual Men, and Women’s Vulnerability to HIV/AIDS.” American Journal of Public Health 100, no. 3: 435–­45. “HIV/AIDS in Conflict Situations. Editor’s Comment.” 1998. AIDS Analysis Africa 8, no. 5: 13. Hoffman, Danny. 2011. “Violent Virtuosity: Visual Labor in West Africa’s Mano River War.” Anthropological Quarterly 84, no. 4: 949–­75. International Crisis Group. 2004. “Liberia and Sierra Leone: Rebuilding Failed States.” Crisis Group Africa Report. Brussels: International Crisis Group. IRIN. 2005. “Sierra Leone: New Survey Expected to Show Much Higher HIV Prevalence Rate.” Plusnews. United Nations Office for the Coordination of Humanitarian Affairs: Integrated Regional Information Network. Jackson, Michael. 2004. “The Prose of Suffering and the Practice of Silence.” Spiritus 4, no. 1: 44–­59. ———. 2005. “Whose Human Rights? Suffering and Reconstruction in Post-­War Sierra Leone.” Sites: A Journal of Social Anthropology & Cultural Studies 2, no. 2: 141–­59. ———. 2007. Excursions. Durham, N.C.: Duke University Press. Jewkes, Rachel. 2006. “Beyond Stigma: Social Responses to HIV in South Africa.” The Lancet 368, no. 9534: 430–­31. Johnson, Karin. 2002. “AIDS as a U.S. National Security Threat: Media Effects and Geographical Imaginations.” Feminist Media Studies 2, no. 1: 81–­96. Jungle Leaders, The. 2006. Di Sistem, Di Sistem. Kaiser, Reinhard, Paul Spiegel, Peter Salama, William Brady, Elizabeth Bell, Kyle Bond, and Marie Downer. 2002. HIV Seroprevalence and Behavioral Risk Factor Survey in Sierra Leone. Atlanta: Centers for Disease Control and Prevention. Kaldor, Mary, and James Vincent. 2006. Evaluation of UNDP Assistance to Conflict-­Affected Countries: Case Study Sierra Leone. Geneva: United Nations Development Program.

Bibliography ·  165

Kaler, Amy. 2004. “The Moral Lens of Population Control: Condoms and Controversies in Southern Malawi.” Studies in Family Planning 35, no. 2: 105–­15. Kalofonos, Ippolytos. 2010. “All I Eat Is ARVs: The Paradox of AIDS Treatment Interventions in Central Mozambique.” Medical Anthropology Quarterly 24, no. 3: 363–­80. Kandeh, Jimmy D. 1992. “Politicization of Ethnic Identities in Sierra Leone.” African Studies Review 35, no. 1: 81–­99. Kandeh, Mariama. 2005. “Sierra Leone: Women, Money, and Prostitution.” Freetown Concord Times. Kaplan, Robert. 1994. “The Coming Anarchy: How Scarcity, Crime, Overpopulation, and Disease Are Rapidly Destroying the Social Fabric of our Planet.” Atlantic Monthly, February 1994: 485–­505. Karim, Quarraisha Abdool, Ayesha BM Kharsany, Janet A. Frohlich, Lise Werner, May Mashego, Mukelisiwe Mlotshwa, Bernadette T. Madlala, Fanelesibonge Ntombela, and Salim S. Abdool Karim. 2011. “Stabilizing HIV Prevalence Masks High HIV Incidence Rates Amongst Rural and Urban Women in KwaZulu-­Natal, South Africa.” International Journal of Epidemiology 40, no. 4: 922–­30. Katz, Itamar, and Daniel Low-­Beer. 2008. “Why Has HIV Stabilized in South Africa, Yet Not Declined Further? Age and Sexual Behavior Patterns among Youth.” Sexually Transmitted Diseases 35, no. 10: 837–­42. Keen, David. 2005. Conflict and Collusion in Sierra Leone. Oxford: James Currey. Khan, Amadu Wurie. 1998. “Journalism and Armed Conflict in Africa: The Civil War in Sierra Leone.” Review of African Political Economy 25, no. 78: 585–­97. Kidder, Tracy. 2003. Mountains beyond Mountains: The Quest of Dr. Paul Farmer, A Man Who Would Cure the World. New York: Random House. Kleinman, Arthur. 2006. What Really Matters: Living a Moral Life amidst Uncertainty and Danger. New York: Oxford University Press. ———. 2007. “The Bioculture of Caregiving: A Commentary on Biocultures.” New Literary History 38: 593–­99. ———. 2008. “Caregiving: The Odyssey of Becoming More Human.” The Lancet 373, no. 9660: 292–­93. Klitzman, Robert, and Ronald Bayer. 2003. Mortal Secrets: Truth and Lies in the Age of AIDS. Baltimore: Johns Hopkins University. Lahai-­Momoh, Judith C., and Michael W. Ross. 1997. “HIV/AIDS Prevention-­ Related Social Skills and Knowledge among Adolescents in Sierra Leone, West Africa.” African Journal of Reproductive Health 1 no. 1: 37–­44. Lawday, Andrew. 2002. “HIV and Conflict: A Double Emergency.” Westport, Conn.: Save the Children. Lawson, Victoria. 2007. “Geographies of Care and Responsibility.” Annals of the Association of American Geographers 97, no. 2: 1–­11.

166 · Bibliography

Linke, Uli. 2006. “Contact Zones.” Anthropological Theory 6, no. 2: 205–­25. Little, Kenneth Lindsay. 1973. African Women in Towns: An Aspect of Africa’s Social Revolution. London: Cambridge University Press. Lowicki-­Zucca, Massimo, Paul Spiegel, and Filippo Ciantia. 2005. “AIDS, Conflict, and the Media in Africa: Risks in Reporting Bad Data Badly.” Emerging Themes in Epidemiology 2, no. 1: 12. MacQueen, Kathleen M. 1994. “The Epidemiology of HIV Transmission: Trends, Structure, and Dynamics.” Annual Review of Anthropology 23, no. 1: 509. Malkki, Liisa. 1996. “Speechless Emissaries: Refugees, Humanitarianism, and Dehistoricization.” Cultural Anthropology 11, no. 3: 377–­404. Maman, Suzanne, Jessie K. Mbwambo, Nora M. Hogan, Ellen Weiss, Gad P. Kilonzo, and Michael D. Sweat. 2003. “High Rates and Positive Outcomes of HIV-­Serostatus Disclosure to Sexual Partners: Reasons for Cautious Optimism from a Voluntary Counseling and Testing Clinic in Dar Es Salaam, Tanzania.” AIDS and Behavior 7, no. 4: 373–­82. Mangham, Lindsay J., and Kara Hanson. 2010. “Scaling Up in International Health: What Are the Key Issues?” Health Policy and Planning 25, no. 2: 85–­96. Maxwell, Claire, Peter Aggleton, and Ian Warwick. 2008. “Involving HIV-­ Positive People in Policy and Service Development: Recent Experiences in England.” AIDS Care 20, no. 1: 72–­79. Mbembe, Achille, and Sarah Nuttall. 2004. “Writing the World from an African Metropolis.” Public Culture 16, no. 3: 347–­72. Medley, Ann, Claudia García-­Moreno, Scott McGill, and Suzanne Maman. 2004. “Rates, Barriers, and Outcomes of HIV Serostatus Disclosure among Women in Developing Countries: Implication for Prevention of Mother-­to-­ Child Transmission Programs.” Bulletin of the World Health Organization 82, no. 4: 299–­307. Menon-­Johansson, Anatole S. 2005. “Good Governance and Good Health: The Role of Societal Structures in the HIV Pandemic.” BMC International Health and Human Rights 5: 4. “Migration and HIV: War, Oppression, Refugee Camps Fuel Spread of HIV.” 1998. The Bridge 5: 4–­5. Mills, Anne. 2005. “Mass Campaigns versus General Health Services: What Have We Learnt in 40 Years about Vertical versus Horizontal Approaches?” Bulletin of the World Health Organization 83, no. 4: 315–­16. Mills, Edward J., Sonal Singh, Brett D. Nelson, and Jean B. Nachega. 2006. “The Impact of Conflict on HIV/AIDS in Sub-­Saharan Africa.” International Journal of STD & AIDS 17, no. 11: 713–­17. Mishra, Vinod, Simona Bignami-­Van Assche, Robert Greener, Martin Vaessen, Rathavuth Hong, Peter D. Ghys, J. Ties Boerma, Ari Van Assche,

Bibliography ·  167

Shane Khan, and Shea Rutstein. 2007. “HIV Infection Does Not Disproportionately Affect the Poorer in Sub-­Saharan Africa.” AIDS 21, Suppl. no. 7: S17–­S28. Misinguzi, Joshua, Wilford Kirungi, Alex Opio, Livia Montana, Vinod Mishra, Elizabeth Madraa, Benon Biryahwaho et al. 2009. “Comparison of HIV Prevalence Estimates from Sentinel Surveillance and a National Population-­Based Survey in Uganda, 2004–­2005.” Journal of Acquired Immune Deficiency Syndrome (JAIDS) 51, no. 1: 78–­84. Montana, Livia, Vinod Mishra, and Rathavuth Hong. 2008. “Comparison of HIV Prevalence Estimates from Antenatal Care Surveillance and Population-­ Based Surveys in Sub-­Saharan Africa.” Sexually Transmitted Infections 84, Suppl. no. 1: 78–­84. Moore, Sally Falk. 1987. “Explaining the Present: Theoretical Dilemmas in Processual Ethnography.” American Ethnologist 14, no. 4: 727–­36. Moran, Mary H. 1990. Civilized Women: Gender and Prestige in Southeastern Liberia. Ithaca, N.Y.: Cornell University Press. ———. 2000. “Uneasy Images: Contested Representations of Gender, Modernity, and Nationalism in Pre-­War Liberia.” In Gender Ironies of Nationalism, ed. Tamar Mayer, 113–­38. New York: Routledge. Morris, Kelly. 2008. “The Effect of HIV/AIDS on International Health.” The Lancet 8, no. 8: 468–­69. Morris, Wesley. 2012. “‘How to Survive a Plague’ Looks Back at AIDS Activism’s Power.” Boston Globe, Arts and Entertainment section. September 27,  2012. http://www.boston.com/ae/movies/2012/09/27/how-survive-plague​ -looks-​back-aids-activism-power/oblpTnrDN4PTNO496sZgyO/story.html. (Accessed July 15, 2014.) Nattrass, Nicoli J. 2008. “The (Political) Economics of Antiretroviral Treatment in Developing Countries.” Trends in Microbiology 16, no. 12: 574–­79. ———. 2009. “Poverty, Sex and HIV.” AIDS and Behavior 13 no. 5: 833–­40. Nelson, Victoria S. 1999. “The Reagan Administration’s Response to AIDS: Conservative Argument and Conflict.” In Power in the Blood: AIDS, Politics, and Communication, ed. William N. Elwood, 53–­66. New York: Lawrence Erlbaum Associates. Nguyen, Vinh-­K im. 2002. “Ties that Might Heal: Testimonials, Solidarity, and Antiretrovirals in West Africa.” In Unraveling Ties: From Social Cohesion to New Practices of Connectedness, ed. Yehuda Elkana, Ivan Krastev, Elisio Macamo, and Shalini Randeria, 117–­46. Frankfurt: Campus Verlag. ———. 2005. “Antiretroviral Globalism, Biopolitics, and Therapeutic Citizenship.” In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, ed. Aiwha Ong and Stephen Collier, 124–­44. Malden, Mass.: Blackwell.

168 · Bibliography

———. 2010. Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS. Durham, N.C.: Duke University Press. Obermeyer, Carla Makhlouf, Parijat Baijal, and Elisabetta Pegurri. 2011. “Facilitating HIV Disclosure Across Diverse Settings: A Review.” American Journal of Public Health 101, no. 6: 1011–­23. Oliveira-­Cruz, Valeria, Christoph Kurowski, and Anne Mills. 2003. “Delivery of Priority Health Services: Searching for Synergies within the Vertical versus Horizontal Debate.” Journal of International Development 15, no. 1: 67–­86. Olivier de Sardan, Jean-­Pierre, and Antoinette Tidjani Alou, trans. 2005. Anthropology and Development: Understanding Contemporary Social Change. London: Zed Books. Oomman, Nandini, Michael Bernstein, and Steven Rosenzweig. 2008. Seizing the Opportunity on AIDS and Health Systems. Washington, D.C.: Center for Global Development. Opala, Joseph, and Francois Boillot. 1996. “Leprosy among the Limba: Illness and Healing in the Context of World View.” Social Science & Medicine 42, no. 1: 3–­19. Parkhurst, Justin O. 2002. “The Ugandan Success Story? Evidence and Claims of HIV-­1 Prevention.” The Lancet 360, no. 9326: 78–­80. Parkhurst, Justin O. and Louisiana Lush. 2004. “The Political Environment of HIV: Lessons from a Comparison of Uganda and South Africa.” Social Science & Medicine 59, no. 9: 1913–­24. Paxton, Susan. 2002. “The Paradox of Public HIV Disclosure.” AIDS Care 14, no. 4: 559–­67. Petryna, Adriana. 2002. Life Exposed: Biological Citizens after Chernobyl. Princeton, N.J.: Princeton University Press. Piot, Peter. 2005. “Why AIDS Is Exceptional.” Speech given at the London School of Economics. Piot, Peter, Robert Greener, and Sarah Russell. 2007. “Squaring the Circle: AIDS, Poverty, and Human Development.” PLoS Medicine 4, no. 10: e314. Pisani, Elizabeth. 2008. The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS. London: Granta Books. Prejean, Joseph, Ruiguang Song, Angela Hernandez, Rebecca Ziebell, Timothy Green, Frances Walker, Lillian S. Lin, Qian An, Jonathan Mermin, and Amy Lansky. 2011. “Estimated HIV Incidence in the United States, 2006–­2009.” PloS One 6, no. 8: e17502. Prozorov, Sergei. 2007. “The Unrequited Love of Power: Biopolitical Investment and the Refusal of Care.” Foucault Studies 4: 53–­77. Rabinow, Paul. 1996. Essays on the Anthropology of Reason. Princeton, N.J.: Princeton University Press. Rankin, F. Harrison. 1836. The White Man’s Grave: A Visit to Sierra Leone in 1834. London: Richard Bentley.

Bibliography ·  169

Rehle, Thomas M., Timothy B. Hallett, Olive Shisana, Victoria Pillay-­van Wyk, Khangelani Zuma, Henri Carrara, and Sean Jooste. 2010. “A Decline in New HIV Infections in South Africa: Estimating HIV Incidence from Three National HIV Surveys in 2002, 2005, and 2008.” PloS One 5, no. 6: e11094. Rice, Brian, Jörg Bätzing-­Feigenbaum, Victoria Hosegood, Frank Tanser, Caterina Hill, Till Barnighausen, Kobus Herbst, Tanya Welz, and Marie-­Louise Newell. 2007. “Population and Antenatal-­Based HIV Prevalence Estimates in a High Contracepting Female Population in Rural South Africa.” BMC Public Health 7: 160. Richter, Donna L., Muriel J. Harris, Ann L. Coker, and Jacquie Fraser. 2001. “Limiting the Spread of HIV/AIDS in Sierra Leone: Opportunities for Intervention.” Journal of the Association of Nurses in AIDS Care 12, no. 5: 48–­54. Robins, Steven. 2006. “From Rights to Ritual: AIDS Activism in South Africa.” American Anthropologist 108, no. 2: 312–­28. Rose, Nikolas, and Carlos Novas. 2005. “Biological Citizenship.” In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, ed. Aihwa Ong and Stephen Collier. Malden, Mass: Blackwell. Schatzberg, Michael. 2001. Political Legitimacy in Middle Africa: Father, Family, Food. Bloomington: Indiana University Press. Scheper-­Hughes, Nancy. 1994. “An Essay: AIDS and the Social Body.” Social Science & Medicine 39, no. 7: 991–­1003. Schneider, Helen, and Didier Fassin. 2002. “Denial and Defiance: A Socio-­ Political Analysis of AIDS in South Africa.” AIDS 16: S45–­S51. Scott, James C. 1987. Weapons of the Weak: Everyday Forms of Peasant Resistance. New Haven, Conn.: Yale University Press. ———. 1998. Seeing Like a State: How Certain Schemes to Improve the Human Condition Have Failed. New Haven, Conn.: Yale University Press. Sessums, Kevin. 2009. “Awful Middle-­Class Queens.” The Daily Beast. http://www​ .­thedailybeast.com/articles/2009/04/09/awful-middle-class-queens.html. Shaw, Rosalind. 2000. “Tok Af, Lef Af: A Political Economy of Temne Techniques of Secrecy and Self.” In African Philosophy as Cultural Inquiry, ed. Ivan Karp and D. A. Masolo, 25–­49. Bloomington: Indiana University Press. ———. 2002. Memories of the Slave Trade: Ritual and the Historical Imagination in Sierra Leone. Chicago: University of Chicago. ———. 2005. “Rethinking Truth and Reconciliation Commissions: Lessons from Sierra Leone.” United States Institute of Peace Reports, Special Report 130: 1–­12. ———. 2007. “Memory Frictions: Localizing the Truth and Reconciliation Commission in Sierra Leone.” International Journal of Transitional Justice 1, no. 2: 183–­207. Shiffman, Jeremy. 2008. “Has Donor Prioritization of HIV/AIDS Displaced Aid for Other Health Issues?” Health Policy and Planning 23, no. 2: 95–­100.

170 · Bibliography

Shiffman, Jeremy, David Berlan, and Tamara Hafner. 2009. “Has Aid for AIDS Raised All Health Funding Boats?” JAIDS 52, Suppl. no. 1: S45–­S48. Shilts, Randy. 2000. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press. Silva, Cristobal. 2011. Miraculous Plagues: An Epidemiology of Early New England Narrative. Oxford: Oxford University Press. Sontag, Susan. 1990. Illness as Metaphor and AIDS and Its Metaphors. New York: Doubleday. Spiegel, Paul. 2004. “HIV/AIDS among Conflict-­Affected and Displaced Populations: Dispelling Myths and Taking Action.” Disasters 28, no. 3: 322–­39. Spiegel, Paul, Anne Rygaard Bennedsen, Johanna Claass, Laurie Bruns, Njogu Patterson, Dieudonne Yiweza, and Marian Schilperoord. 2007. “Prevalence of HIV Infection in Conflict-­Affected and Displaced People in Seven Sub-­ Saharan African Countries: A Systematic Review.” The Lancet 369, no. 9580: 2187–­95. Star, Susan Leigh, and Anselm Strauss. 1999. “Layers of Silence, Arenas of Voice: The Ecology of Visible and Invisible Work.” Computer Supported Cooperative Work (CSCW) 8, no. 1: 9–­30. Stoneburner, Rand L., and Daniel Low-­Beer. 2004. “Population-­L evel HIV Declines and Behavioral Risk Avoidance in Uganda.” Science 304, no. 5671: 714–­18. Tavory, Iddo, and Ann Swidler. 2009. “Condom Semiotics: Meaning and Condom Use in Rural Malawi.” American Sociological Review 74 (April): 171–­89. Taylor, Janelle S. 2005. “Surfacing the Body Interior.” Annual Review of Anthropology 34: 741–­56. Taylor, Louise. 2003. “We’ll Kill You if You Cry”: Sexual Violence in the Sierra Leone Conflict. Washington, D.C.: Human Rights Watch. Trouillot, Michel-­Rolph. 2001. “The Anthropology of the State in the Age of Globalization: Close Encounters of the Deceptive Kind.” Current Anthropology 42, no. 1: 125–­38. Truth and Reconciliation Commission. 2004. Witness to Truth: Report of the Sierra Leone Truth and Reconciliation Commission. Vol. 3A. Freetown: Truth and Reconciliation Commission. Turner, Victor. 1967. The Forest of Symbols: Aspects of Ndembu Ritual. Ithaca, N.Y.: Cornell University Press. UNAIDS. 1997. Counselling and HIV/AIDS. Geneva: UNAIDS. ———. 2007. AIDS Responses in Post-­Conflict Sierra Leone, June 12. Geneva: UNAIDS. ———. 2008. Report on the Global AIDS Epidemic. Geneva: UNAIDS. ———. 2009. What Countries Need: Investments for 2010 Targets. Geneva: UNAIDS.

Bibliography ·  171

United States Department of Defense. 2009. Department of Defense HIV/AIDS Prevention Program Information Sheet, April 2009. Urla, Jacqueline. 1993. “Cultural Politics in an Age of Statistics: Numbers, Nations, and the Making of Basque Identity.” American Ethnologist 20, no. 4: 818–­43. Utas, Mats. 2005. “Victimcy, Girlfriending, Soldiering: Tactic Agency in a Young Woman’s Social Navigation of the Liberian War Zone.” Anthropological Quarterly 78, no. 2: 403–­30. Van Roey, Jens. 1999. From Principle to Practice: Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA), UNAIDS/99.43E. Geneva: UNAIDS. Vidal, Laurent. 2001. “Sida et Situations Sociales des Femmes en Afrique: Des Notions aux Methodes de Recherche.” Cahiers d’Etudes et de Recherches Francophones/ Sante 11, no. 4: 265–­72. Vieira, Marco A. 2007. “The Securitization of the HIV/AIDS Epidemic as a Norm: A Contribution to Constructivist Scholarship on the Emergence and Diffusion of International Norms.” Brazilian Political Science Review 1, no. 2: 137–­81. Wagner, Sarah. 2008. To Know Where He Lies: DNA Technology and the Search for Srebrenica’s Missing. Berkeley: University of California Press. Watkins, Susan, and Ann Swidler. 2005. “Hearsay Ethnography: Capturing Collective Life.” Paper presented at the Population Association of America annual meeting in Philadelphia, March 29−April 2, 2005. Whiteside, Alan. 2008. “The Implications Beyond Public Health If We Don’t Manage the HIV Epidemic.” Journal of the International AIDS Society 11, Suppl. no. 1: K3.

This page intentionally left blank

Index

Accounting, 21, 43–49, 51, 53–54, 56–57, 121; enumerative, 21, 44–45, 51, 53, 56; vernacular, 44–49, 51, 54, 56 AIDS Response Group (ARG), 36–37 All People’s Congress (APC), 15–16

Class, 13, 23, 31, 43–44, 56, 64, 93, 95–96, 102, 131 Concealment, 22, 53, 66, 71–73, 80, 82–83, 88, 96, 142 Confidentiality, right to, 67, 85–86. See also Privacy Cruikshank, Barbara, 62–64

Biopolitics, 9, 15–16, 21, 23, 102, 119, 122, 123 Biosociality, 120, 132–36, 139, 141 Biotribalism, 14

Development, 6–8, 10–12, 22–23, 28–29, 43–47, 55–56, 63, 70, 82, 85, 88, 97, 105, 118–19, 121, 123–24, 127, 132, 143–44, 151n4 Disclosure, 20, 22, 41–42, 61–88, 91–94, 96–97, 107, 140, 142–43; appropriate modes of, 41, 74–77, 80, 88; as opportunity to negotiate condom use, 68, 80; as reinforcing HIV exceptionalism, 72, 87; coerced, 42, 64, 69–71, 73, 78, 83, 85–87; in exchange for social and economic support, 22, 39, 52, 66, 68, 71, 73, 75, 82–83, 86–87; narratives, 9, 88; practices of, 9–10, 74–76, 142; purpose of, 42, 66–71, 73, 75–76, 80–82, 85–88, 97; refusal to disclose, 53, 65, 68, 78–80, 83–84, 96; risks of, 66, 68, 71–76, 84, 86–88, 107; selective, 53, 68, 71, 79–80, 87; strategies for leveraging, 52, 73, 86, 106. See also Imperative to talk

Care, 14, 17–20, 23, 104–5, 132; ethics of care, 4, 14, 104; marginalization of, 14, 17, 140–41; state failure to provide, 15, 18–20, 23, 63, 105, 132, 136–37, 143; state forms of, 119 Citizenship, 18, 133–37; biological citizenship, 18–19, 120, 132–36, 152n10; expectations for, 17–19, 80; expectations of citizens for government’s role, 19, 126–27, 130, 136–37; government’s duty to individuals, 19; sexual citizenship, 119, 127; therapeutic citizenship, 18–19, 120, 136 Civil war, 5–6, 15, 19, 27–29, 43–44, 48–50, 56–57, 66, 69–70, 131, 135, 137, 140

173

174 · INDEX

England, Roger, 45–47 Ethics, 4, 18, 23, 40, 64, 67, 79–81, 85–86, 117, 140 Ethnicity, 131 Familism, 16–17, 19, 77, 103–5, 112, 129, 140, 156n3 Farmer, Paul, 152n5 Ferme, Mariane, 71 Funding, 6–9, 14, 27–28, 38–40, 42–43, 45–47, 49, 54–55, 61, 63, 97, 99, 103–5, 109–10, 112–13, 118, 123, 126, 133, 136, 139–42, 144, 155n2 Gay rights, 67, 135 Gender, 20–21, 23, 29, 47, 72, 77, 80, 130–31, 134, 143; male culpability, 20, 77, 79–80, 134; moral logics of, 12, 20, 23, 77, 130–31; norms, 12, 23, 32, 77, 131, 134, 143; roles, 20, 29, 77, 130–31, 134; female vulnerability, 54–55, 79–80, 131, 140; willful infection, 20, 79–80, 85 Global Fund for AIDS, Tuberculosis, and Malaria (GFATM, or Global Fund), 19, 27, 30–31, 39, 49, 103, 105, 133, 136, 152n2, 152n6 Governance, 9, 11, 15–17, 19–21, 23–24, 33, 56, 63, 115, 117, 119, 122, 125, 143 Greater Involvement of People with AIDS (GIPA), 65, 90–91, 93 Hierarchy, 9, 11, 87, 89–92, 95, 126, 131 HIV activism, 7–8, 20, 66–67, 71, 86, 94, 120, 135–36 HIV as emergency, 6, 48 HIV exceptionalism, 8–9, 21, 24, 27, 42–43, 45–47, 52–53, 55–56, 72, 92, 138–39, 141, 143, 145 HIV prevalence, 5–7, 12–13, 36, 42–43, 47–51, 55–56, 120–23, 141, 144;

debates, 21, 47–51, 56, 141–42; explanations of, 49–51, 121; predictions, 6–7, 48–50, 126 HIV testing, 2, 5, 14, 22, 35–38, 54, 73, 83–84, 96–97, 125–27, 135, 142 Human Rights Watch, 69 Identity, 21, 43, 52, 56, 67–68, 73, 76, 82–83, 90, 92, 102, 130, 133, 135–36, 140, 142–43 Ideological verticality, 7–8 Imperative to talk, 22, 42, 64, 66–67, 94, 140. See also Disclosure International AIDS Conference, Fourteenth, 138, 144–45 Jackson, Michael, 71–72 Joint United Nations Program on HIV and AIDS (UNAIDS), 29–30, 39, 45, 47, 49–50, 61, 90–91, 138–39, 145 Jungle Leaders, The, 17–18 Kabbah, Ahmad Tejan, 16, 152n8 Kinship, 17, 103–5, 112, 129, 132 Kleinman, Arthur, 18–19 Koroma, Ernest Bai, 16, 117, 122–24 Lancet, The, 50, 138–39 Mbeki, Thabo, 121 Methodological horizontality, 7–8, 27 Millennium Development Goal (MDG) Award, 123 Ministry of Health and Sanitation, 121 Mitterrand, Francois, 120 Moore, Sally Falk, 11–12 Morality, 16–17, 72, 85, 137; and state failure, 16–18, 23; and sexual character, 6, 17, 20, 23, 46, 67, 76–77, 80, 119–21, 124–25 Museveni, Yoweri, 121

INDEX ·  175

National AIDS Secretariat (NAS), 29–30, 38–39, 42, 48–49, 61, 99–100, 117–18 National Network for HIV-Positive People (NETHIPS), 42, 61, 100, 135 Network of African people living with HIV (NAP+/West Africa), 61, 100 Nguyen, Vinh-Kim, 18, 136 Novas, Carlos, 134–36 Olivier de Sardan, Jean-Pierre, 10–11 Personhood, 22, 72, 82–83, 134–36 Petryna, Adriana, 18–19, 133–34 Physicians for Human Rights, 69 Piot, Peter, 45–46 Political economy: of HIV-positivity, 22, 52–54, 82, 106, 112, 130; of suffering, 22, 70, 81 Political will, 119–22 Positive living, 22–23, 43, 55, 61, 64, 89–113, 142–43; becoming HIV positive, 9, 65, 75, 142–43; compliance with ideals, 55, 64, 66, 92–94, 105, 107, 110–11; modeling positive living, 90, 93–95, 107, 135 Post-conflict development, 5–6, 9, 22–23, 28–29, 47, 51, 69–70, 88, 119, 131, 144, 153n3 President’s Emergency Plan for AIDS Relief (PEPFAR), 136, 138, 157n6 Privacy, right to, 67, 72, 84–86, 102. See also Confidentiality Racism, 12, 32, 85–86, 121–22, 144 Reagan, Ronald, 120. See also Gay rights Reciprocity, 11, 104–5, 132, 140 Refugees, 27–29, 51, 69–70, 109

Republic of Sierra Leone’s Armed Forces, 14 Research methods, 11, 31–38, 49–50, 69–70, 83 Responsibilization, 17, 67, 71, 73–74, 76, 80–81, 85, 87–88, 92, 104–5, 119, 135, 140–43 Rose, Nikolas, 134–36 Save the Children (SC), 48, 50–51 Scaling up, 6, 105 Secrecy, 53, 65, 67–69, 71–72, 83, 85, 88, 96. See also Concealment; Silence Self-esteem, 17, 22, 56, 62–64, 130, 132 Self-reliance, 17, 62, 89–90, 93, 104, 107, 111, 141 Shaw, Rosalind, 69–72 Sierra Leone People’s Party (SLPP), 15 Silence, 42, 65–67, 69, 71–72, 84, 88, 120. See also Secrecy Special Summit of the African Union on HIV/AIDS, TB and Malaria, 123–24 State: as caring institution, 16, 20, 23; critique of, 16–20, 23, 33, 63, 132, 136–37, 143 Stigma, 42, 47, 55, 65–68, 75, 85, 96, 99–101, 142, 144–45, 154n2; and discrimination, 42, 65, 68, 81–82, 100–101, 123, 154n1; marginalization, 8, 13, 17, 42, 68, 122, 141–42 Subjectivity, 9–10, 143 Suffering, 16, 18, 22–23, 33, 48, 51–53, 81, 109, 111, 133, 141, 143–44; exceptional forms of, 51–53, 55, 141–44; narratives of, 48, 51, 70–71, 81, 109; visibility of, 16, 95, 109, 111

176 · INDEX

Support association, 17, 22–23, 35, 37–41, 48, 52–55, 61, 64–66, 73–74, 77–78, 81–84, 88–90, 93–96, 98–99, 101–5, 107–8, 110–13, 127, 132–36, 139–43 Truth and Reconciliation Commission (TRC), 69–72, 81–82 United Nations High Commissioner for Refugees (UNHCR), 51 United States Agency for International Development (USAID), 138 United States Centers for Disease Control and Prevention (CDC), 48–50, 67 United States Department of Defense, 14, 39–40 United States Embassy, 40 United States Presidential Advisory Council on HIV/AIDS (PACHA), 46

Violence, 4, 15, 47, 66, 72, 121; gender-based, 29, 62–63, 69–70, 98; sexual violence, 5, 12, 29, 43–44, 48, 66, 69, 98, 140 Visibility, 9, 22–23, 64–65, 71, 81, 89–91, 93–102, 107–13, 139, 141–43; keeping up appearances, 9, 22, 65, 81, 93, 95–96, 104, 107–8; surfaces, 22, 64, 71, 96–97, 107, 143; visuality, 90, 93, 95–96 Vulnerability, 20, 23, 33, 44, 50–54, 56, 89, 102, 110–13, 141–42; performing, 93, 102, 107–10, 112, 130, 140–41; visibility of, 23, 108–10, 112, 142 World AIDS Day, 66, 103, 117, 123 World Bank, 99, 138 World Food Program (WFP), 39–40, 110–12, 133 World Health Organization (WHO), 67, 125 Zero Grazing Campaign, 121

ADIA BENTON is assistant professor of anthropology at Brown University.