Mistreated: The Political Consequences of the Fight against AIDS in Lesotho

By Nora Kenworthy

As global health institutions and aid donors expanded HIV treatment throughout Africa, they rapidly "scaled up" programs, projects, and organizations meant to address HIV and AIDS. Yet these efforts did not simply have biological effects: in addition to extending lives and preventing further infections, treatment scale-up initiated remarkable political and social shifts.

In Lesotho, which has the world's second highest HIV prevalence, HIV treatment has had unintentional but pervasive political costs, distancing citizens from the government, fostering distrust of health programs, and disrupting the social contract. Based on ethnographic observation between 2008 and 2014, this book chillingly anticipates the political violence and instability that swept through Lesotho in 2014.

This book is a recipient of the Norman L. and Roselea J. Goldberg Prize from Vanderbilt University Press for the best book in the area of medicine.

• Language: English
• Publisher: Vanderbilt University Press
• Release date: Oct 3, 2017
• ISBN: 9780826503985

Nora Kenworthy

Nora Kenworthy is an assistant professor in the School of Nursing and Health Studies at the University of Washington Bothell and an adjunct assistant professor of anthropology at the University of Washington Seattle.

Book preview

Mistreated

The Political Consequences of the Fight against AIDS in Lesotho

Nora Kenworthy

Vanderbilt University Press | Nashville

© 2017 by Vanderbilt University Press

Nashville, Tennessee 37235

All rights reserved

First printing 2017

This book is a recipient of the Norman L. and Roselea J. Goldberg Prize for the best project in the area of medicine.

Library of Congress Cataloging-in-Publication Data on file

LC control number 2016042798

LC classification number RA643.86.L5

Dewey classification number 362.19697/920096885—dc23

LC record available at lccn.loc.gov/2016042798

ISBN 978-0-8265-2154-5 (hardcover)

ISBN 978-0-8265-2155-2 (paperback)

ISBN 978-0-8265-2156-9 (ebook)

For Ethan

Contents

Acknowledgments

A Note on Terminology, Pronunciation, and Spelling

1 Promises Unfulfilled

2 Democratic Deficits

3 Building Competent Citizens

4 Venerated Communities, Vulnerable Citizens

5 The Privileged and the Damned

6 Corporate Clinics and Humanitarian Consumption

7 Envisioning Lesotho

Notes

References

Index

Acknowledgments

A book, especially a first book, accrues a profound debt of gratitude that cannot be fully repaid. I owe boundless thanks to the many extraordinary people in Lesotho whose lives informed this project for nearly six years. As I carried out this research, they treated me with a respect, generosity, humility, honesty, and patience that far exceeded what I deserved. What I have learned of these characteristics, I have tried to apply in my recounting of their stories, lives, and experiences. Any failures in doing so, any unintended misrepresentations or errors, and all opinions included herein are my own, and for them I take full responsibility.

I owe particular thanks to the support groups and clinics, as well as research informants and institutional partners, who hosted me for long periods of time, tolerating my questions and disruptions. There will be too many names left out of these acknowledgments because of the need to protect identities with pseudonyms. Many of those who helped the project took risks to do so, and to them I am especially indebted. Kea leboha haholo, bo-mme le bo-ntate.

The woman I call Lebohang in this text was one of my first and closest friends, and my primary language teacher. Lebohang passed away—painfully, and far too soon—in December 2010. To her family, I hope this work serves, in some small way, as a memorial to her work and the generosity with which she approached the world.

A few research assistants worked on this project over the years. Pontšo Tseounyane was an extraordinary help in data gathering, translation, and interviewing. Sabina Montši and Thabo Liphoto assisted in the research for shorter but no less crucial periods of time. I am indebted to them for their insights, but must underscore that any political opinions or critiques are entirely my own. Though she is far more an expert than an assistant, MaOxford Lerotholi provided an essential review of the manuscript in the later stages of writing. I am thankful to her keen eye.

The faculty and staff of the Institute of Southern African Studies (ISAS) at the National University of Lesotho (NUL) provided a much-needed academic home during 2010–2011, and my colleagues there guided the research in innumerable ways. I am particularly thankful to Drs. Resetselemang Leduka, Setsabi Sestabis, and ’Matšeliso Mapetla, as well as NUL colleagues Amelia Ranotsi and James Molapo. Further afield, Alan Whiteside provided essential feedback on portions of the manuscript. Early on in the research process, Nicoli Nattrass, Jeremy Seekings, Mokhantšo Makoae, Stephen Rule, and David Turkon helped orient me to the region and to Lesotho. In 2014, Annali Fichardt warmly welcomed me into her home, and other faculty and postdoctoral fellows at the University of the Free State gave generously of their time and insights on the project.

The research also benefited from numerous connections with organizations, agencies, and institutions in Lesotho and South Africa, including IDASA, MSF, TAC, FIDA, NAC, HEARD, LENEPWHA, LECAWU, FAWU, the Transformation Resource Center, the LCN, M2M, the Lesotho Consumer Protection Association, the Office of the First Lady, the Lesotho Planned Parenthood Association, the Clinton Foundation, Management Sciences for Health, BIPAI, CHAL, UNAIDS, WHO, UNDP, USAID, and those involved in the Health Development Partners Forum. Partners and friends at ALAFA, GTZ (GIZ), the Ministry of Local Government and Chieftainship, and ICAP provided essential and unwavering support at various stages of the research process. To those individuals at these organizations who gave so freely of their time and expertise, I am particularly thankful. I am also grateful to the Lesotho Ministry of Health and Social Welfare for granting permission and ethical approval for this project to be carried out.

As someone who has not always felt comfortable in academic settings, one of the most unexpected and deepest joys of academic life has been finding a network of wonderful colleagues, mentors, and friends. The Department of Sociomedical Sciences at Columbia University nurtured my work from the beginning, giving me the confidence to shift disciplinary boundaries and pursue this project as an ethnography. For that, as well as his unwavering support, patience, and kindness, I am especially indebted to Richard Parker. One could not ask for a more brilliant or generous mentor. Ron Bayer was a steadfast presence throughout my time at Columbia, and lent his expertise in the history and politics of the HIV epidemic to many iterations of this project. Kim Hopper first introduced me to rigorous ethnographic methods, and then patiently mentored me through not one but multiple research projects. His mantra to trust the method got me through fieldwork; his craftsmanship as a writer helped me translate field notes into chapters. I was deeply honored that Rosalind Petchesky and Mamdou Diouf also provided extensive feedback on chapters throughout the process; their unique perspectives have shaped much of this work. Also at Columbia, I am indebted to Wafaa El-Sadr, Jennifer Hirsch, Connie Nathanson, and Carole Vance, as well as many other faculty for their mentorship and support. At ICAP, Elaine Abrams and Jessica Justman provided support for early work in Lesotho on HIV/AIDS. Finally, I would not have gotten through Columbia without the camaraderie of fellow students I now am lucky to consider professional colleagues. There are too many to mention here by name. Sara Lewis, Anne Montgomery, Brendan Hart, Robert Frey, Brooke West, Allison Goldberg, Radhika Gore, Ashley Fox, Siri Suh, Kirk Fiereck, and Ronna Popkin all provided essential insights and much-needed doses of reality throughout this project.

I consider myself extraordinarily fortunate to have landed in a place as rich in friends and colleagues as the University of Washington. I am particularly thankful to my writing group colleagues—Johanna Crane, Ben Gardner, Danny Hoffman, Ron Krabill, and Lynn Thomas—for the mentorship, feedback, and company needed to finish this manuscript. Johanna Crane also provided extensive edits on various proposals, chapter drafts, and book dilemmas that made me feel all the more blessed to have her as a friend and colleague. Lauren Berliner was an exceedingly supportive friend and partner throughout the last two years of writing. Many other colleagues—including David Allen, Charlie Collins, Jody Early, Andrea Kovalesky, Lauren Lichty, Selina Mohammed, Jamie Shirley, Chris Wade, and Mayumi Wilgerodt—provided various forms of much-needed encouragement and mentorship throughout the process. On the Seattle campus, I feel especially lucky to be connected to so many remarkable scholars whose insights and support have shaped this book, including Rachel Chapman, Steve Gloyd, Amy Hagopian, James Pfeiffer, Bettina Shell-Duncan, Matt Sparke, and Janelle Taylor. Finally, I am thankful to my students, especially those in my global health classes who joined me on trips to foundations and organizations in Seattle that informed much of Chapter 7.

I was fortunate to receive a number of grants and fellowships that enabled me to carry the field research on which this book is based: these include a National Science Foundation Law and Social Sciences Program Doctoral Dissertation Improvement Grant (grant 1024097); a US/IIE Fulbright Program student fellowship; a fellowship from the American Association of University Women; the Leitner Family Fellowship from the Institute for African Studies at Columbia University; and a Columbia Population Research Center seed grant. I was able both to begin and to complete the manuscript in large part because of the hospitality and support of the Helen Riaboff Whiteley Center on San Juan Island, which offered necessary solitude and breathtaking scenery throughout repeated stays. Any opinions, findings, conclusions, or recommendations expressed in this material are my own, and do not necessarily reflect the views of these institutions.

Some of the material in this book has been published in different forms elsewhere. A version of Chapter 6 appeared as a 2014 article in Medical Anthropology Quarterly under the title A Manufactu(RED) Ethics; a small portion of that chapter’s data on ALAFA’s closure appears in the 2016 book Case Studies on Corporations and Global Health Governance: Impacts, Influence and Accountability. Chapter 3 includes data that appeared in a 2014 Global Public Health article entitled Participation, Decentralisation and Déjà Vu. I first published about some of the themes that appear throughout this book in a 2014 Women’s Studies Quarterly article, Global Health: The Debts of Gratitude.

It has been a genuine pleasure to work with Vanderbilt University Press in developing and revising this book. Michael Ames’s straightforward, insightful, and reassuring feedback—as well as his frighteningly fast responses to revised chapters—nurtured a manuscript that became far better than I could have imagined at the outset. I am deeply grateful to the press’s three anonymous reviewers, whose detailed insights and specific knowledge about Lesotho helped transform the manuscript.

I have benefited most of all, however, from friends and family who provided an unwavering faith in my abilities and a much-needed perspective on life outside the academy. On two continents and over the span of more than a decade, I have found solace, adventures, and deep connections with a community of friends whose love repeatedly humbles me. My deepest thanks to all of you. I consider myself especially lucky to have in-laws as loving and entertaining as mine: Jonnet, Peter, and Oren Abeles welcomed me into their home numerous times, cared for our dog, Harper, for more than a year while my husband and I lived in Lesotho, and wholeheartedly shared in the successes and anxieties of this project.

To my own parents and the rest of my family, words cannot express my gratitude. What I know about hard work, about the importance of telling a story with fierce accuracy and gentle words, and about striving for a world that is more fair, I have learned from my parents. My husband, Ethan, makes all of this work worth it. He braved boredom, illness, and misadventures to be at my side in Lesotho; that he chose to stick with me afterward and into the future is the greatest gift I have ever been given. This book is for him.

A Note on Terminology, Pronunciation, and Spelling

The official languages of Lesotho (pronounced less-oo-too) are Sesotho and English. Those who reside in Lesotho, as well as those who claim heritage from Lesotho or speak Sesotho in South Africa, refer to themselves as Basotho; an individual is called a Mosotho. The multiple meanings of Basotho can cause confusion, particularly in a study of politics. This terminology is further complicated by the considerable migration of Basotho between Lesotho and South Africa for work, as well as cross-border familial connections. Here, because I am interested in the experiences of citizens currently living in Lesotho, I typically use the term Basotho to refer to political rather than cultural, linguistic, or familial connections, but this is not intended to discount those other aspects of Basotho identity.

As in other parts of Southern Africa, titles and terms of respect are extremely important in Lesotho, and denote symbolic relations according to age, stature, and familiarity. Adult men are typically referred to as Ntate, or father, and adult or married women as Mme, or mother (an abbreviated spelling is ’Mè). Older adults or those garnering particular respect are referred to as Ntate-moholo (grandfather) or Nkhono (grandmother). Teens and unmarried girls and boys are referred to as abuti (brother) and ausi (sister). Here, for the sake of simplicity and to assist readers, I typically use only the appellations Ntate and Mme. I use them as I would in everyday conversation in Lesotho (which is to say, very frequently). I do this as a way of showing respect for my informants, and to call them as they would wish to be called, though many would also be referred to as Ntate-moholo or Nkhono in person. I have refrained from using these other terms in the text to avoid confusing readers who are not familiar with the appellations.

A few brief notes on pronunciation and spelling may assist readers. Th (as in Lesotho) is pronounced as an aspirated /t/, as in Thailand, not there. An 1 preceding the vowels i or u is pronounced as a hard /d/, so lumela, meaning hello, is pronounced doo-may-lah. A q is pronounced as a sharp click, as it is in Zulu and Xhosa. Readers may note that some words are spelled differently in Lesotho and South Africa. For example, in Lesotho, an aspirated /ts/ sound is written as tš-, while in South Africa it would be spelled tsh-. I follow the spellings used in Lesotho in all cases.

1

Promises Unfulfilled

The Mapoteng Community Association convened its meeting atop a windswept hill at the center of their remote village in the mountains of central Lesotho. Members sat on a collection of battered plastic chairs and wooden benches, wrapped in the thick woolen blankets that serve as necessary insulation in Lesotho’s mountainous climate, especially during its frigid winters. The alpine air was so clear and cold that the sky seemed a surreal, dark blue against the dusky green of enormous mountain aloes encircling the hillside. From this vantage, the group watched the dirt highway in the valley below, on which the occasional SUV or pick-up came into sight, its far-off hum punctuating our conversation. As each vehicle appeared, the discussion paused, and I watched the eyes of the group’s members turn to follow its movement up or down the road. Every truck was white, the ubiquitous color of vehicles owned by the government, development agencies, and nongovernmental organizations (NGOs). If we had been closer, we could have silently noted the logos emblazoned on their sides: Lesotho Ministry of Health and Social Welfare; National AIDS Commission; United Nations Development Programme; World Vision; CARE Lesotho. In the silence that followed another vehicle’s passing, Thabo, one of the group’s members, spoke: We are working all alone. . . . We are working hard but the government just closes its eyes.

It is hard not to feel deliberately unseen in places like Mapoteng. The villagers here, like others in Lesotho, live with the social and political ramifications of having the world’s second-highest HIV prevalence, meaning that nearly one-quarter of all adults are living with HIV (UNAIDS 2014). Earlier in the day, a few women had led me on a tour of homes of the sick and deceased. It was an exercise in mapping local geographies and histories of the epidemic to which I had become eerily accustomed. We passed only a few houses without comment. Though I was told of those who had died of tuberculosis, old age, childbirth, or hunger, my guides said that they knew HIV had come to their village when the coffins came out of the houses in twos and threes, one after another. Access to HIV treatment had more recently slowed the pace of death in Mapoteng, but there were numerous social and bodily ailments that HIV treatment could not assuage.

"We want to be seen with eyes that are helpful," Thabo spat out in frustration. It was not enough, after all, to be seen by the world or the government as a population at risk, or a collection of patients living with HIV. The local clinic, some 10 kilometers away by foot or donkey, offered treatment, but it could no longer be accessed by car or taxi because the bridge had washed out more than a year ago. And though the community association had carefully crafted some twenty-five garden beds—one for each sick patient in the village—as a means of ensuring that those on treatment would have the food they needed to keep taking their medicines, they could not find a donor who would give them seeds with which to grow any vegetables.

Despite common perceptions of HIV as highly stigmatized throughout Africa, the Mapoteng group seemed too depleted by illness for stigma to be their primary concern. Everyone knew who had died and who was too sick to work or farm. What remained was a kind of solidarity forged from senseless and long-term suffering. The bare plots of earth reminded me of the expectations and the distress of the HIV response in highly affected communities: the voluntary labors that formed such a backbone for treatment efforts; the simple needs that had not been met, even as donors poured money into the country; and the hopes deferred as communities prepared for support that did not materialize.

I begin this book with Mapoteng because I believe it helps refocus our attention in a world already saturated with narratives of HIV and AIDS. Mapoteng reminds us that HIV is not experienced simply as a biological tragedy, though it has certainly been that as well. Since the advent of HIV program scale-up—the vast expansion of resources, programs, and policies to address and treat HIV/AIDS globally, which began in the early 2000s—communities like Mapoteng have experienced the political, as well as the biological and social, impacts of HIV. Programs and resources, along with billboards, SUVs, and exhortations for citizens to know their (HIV) status, have multiplied rapidly. But in Lesotho I find myself most often in social landscapes of labors unrecognized, needs unmet, and promises unfulfilled. Organizations and initiatives circulate rapidly through communal and clinical sites, conferring programs and technologies and pharmaceuticals. But they rarely provide a more robust or secure means of survival for citizens living in one of the poorest and most economically unequal places on earth (UNDP 2014; World Bank 2015).¹ With the advent of treatment, citizens went from barely surviving—watching sickness consume families and communities in the absence of antiretroviral treatment (ART)—to surviving barely, equipped with the pharmaceuticals necessary to treat the disease, but having little else with which they might carve out a living and a life.

Of course, life was hard in Lesotho prior to HIV. And, too often, narratives of Africa and of aid efforts have been suffused with an all-encompassing pessimism. HIV treatment extended lives, brought individuals and families back from death’s doorstep, and saved children from suffering and early death by preventing mother-to-child transmission. Many communities like Mapoteng discovered deep wells of solidarity and communal efficacy, despite the challenges brought by the virus. And it is important to note that HIV efforts were most often undertaken with noble intentions, by skilled and committed professionals.

But scale-up—a resource-intensive process, led by external donors and NGOs in the absence of a robust civil society—changed citizens’ expectations about what the government could provide, and the resources it could mobilize in a time of perpetual crisis. Perceptions of the epidemic as an exceptional emergency motivated and justified an ethos of humanitarian intervention rather than democratic process (Benton 2015; Redfield 2013). The influx of NGOs and programs to address HIV changed the landscape of service provision in the country, such that overlapping, often temporary projects became responsible for essential social services, while jobs and financial resources accrued unequally and HIV became one of the country’s most significant industries.² Citizens increasingly looked to fleeting, unpredictable relationships with NGOs and donors, rather than a social contract with the state, to ensure their means of survival. Meanwhile, state institutions became more attentive to the priorities and expectations of donors and experts than to the demands and desires of citizens. These changes took place as NGOs, donors, and the government promised citizens that HIV programs would bring new hope and opportunity to the country, and billboards showcased smiling, urbanite couples and the positive life they lived thanks to such interventions.

It is these political consequences of scale-up—what I call a politics of recipiency—that this book sets out to examine. In doing so, I want to refocus our attention on places like Mapoteng, rather than simply examining the policies and priorities that have given rise to such politics on the world’s stage and in the offices of bureaucrats in Maseru, Lesotho’s capital. I wish to examine how the everyday life of politics has changed for citizens, and not only for those living with HIV or seeking care within clinic spaces. By looking beyond the typical settings and populations of HIV treatment and intervention, it is possible to observe how political life and citizen subjectivity in this small African democracy have been unexpectedly and inexorably altered by the response to HIV.

As the conversation continued in Mapoteng, the community’s grievances and anxieties came to the fore. I had arrived in the company of a grassroots AIDS advocate, Mme ’Matšeliso, the coordinator of a large network of community groups dispersed throughout the country. Despite the reach of this network, most of the groups, including the one Mme ’Matšeliso ran in her own village, lacked formal, steady support from donors or NGOs. For the most part, they disseminated knowledge and skills among themselves. Their discussions focused on income-generating schemes as often as they concerned aspects of HIV care or education. Their labors always outpaced the resources that they could mobilize: as priorities shifted over the years toward more technical, expert-led innovations for addressing HIV, groups like theirs found it harder to compete for donor attention.

Mme ’Matšeliso had come to Mapoteng this time with little to offer, except for prayers and words of encouragement. As it often did, attention turned to me: I was frequently mistaken for an NGO worker or a clinician, and the group reasonably assumed that I could offer some material help. I again explained that the purpose of my visit was for research, feeling especially chagrined at the futility of this answer. An older, retired miner stood up and spoke to me. I understand this [situation], but I, as one of the people who went to the mines [in South Africa] to earn a living, I know that it is not easy for me to have a voice in that country. It is difficult to have a voice abroad the way you do as a citizen in your own home [country]. His speech gently, and generously, offered me an excuse for my inability to change their situation. But he continued, explaining patiently that my own government decided much of what defined survival in Lesotho. He asked me to return home to the United States and report what I had seen. Please, go back and tell them, ‘I went to Ha Mapoteng and I saw these problems.’ He insisted that my citizenship mattered more than his in fixing these problems. I felt anguished; I had few reasons to argue with him.

Mme ’Matšeliso, however, disagreed. She believed that the source of their problems, and its solution, lay with the government, and the group’s ability to reforge a relationship of accountability and mutual responsibility with their political representatives. She spoke like a preacher, drawing on religious metaphors and the call-and-response patterns used in many African churches. The group responded collectively and enthusiastically, as noted in italics:

I believe everything is good here, because everything is good in Heaven, and so on Earth it shall be good! Because the government is your children, isn’t this so?

Yes!

It’s not [Prime Minister] Ntate Mosisili.

It’s not him.

It’s not these other guys.

It’s not.

It’s not [the prime minister’s wife] Mme ’Mathato. It is your own children. Your children are being sent out but they never fulfill their duties. As we have talked, the cars have been going by. The cars are passing us by time and again. Do you think they don’t see you?

No.

Don’t they know that you are here?

They know!

Why is it that they are doing nothing about anything? It’s because of their hearts—they don’t have generous and good hearts. And yet we are even taken care of by people from other countries! There—over there—are your children! [She points to the road.] Right now I have already seen about three cars [passing us by, on the road]! The government cars, they are just passing by aimlessly, and not entering into the villages! But when you come to the places where they have claimed to be going [and giving services], then you find only mahlomola pelo [tons of suffering].

’Matšeliso acknowledged the strange politics of visibility and invisibility at the very heart of the HIV response: that governments and donors professed to be helping communities just like this one—communities that felt they were supposed to be the recipients of such aid. And yet the cars always seemed to pass by; suffering persisted even as the clinics stocked their ARVs (antiretroviral drugs), and roadside signs advertised new prevention messages. But ’Matšeliso was also trying to convince the group to fundamentally reimagine their relationship with the government. In a place where patrimonialism has been a defining feature of politics, she inverted the power structure between the governors and the governed. If the government was their children, then citizens, as parents, needed to ensure that it was able to do their bidding and fulfill its duties. She compared a government that refused to see their suffering and did not recognize their needs to a naughty child that had to be lovingly but firmly brought to heel.

You shouldn’t be discouraged, Mme ’Matšeliso continued. You should refuse to be discouraged, because everything is going to work out. Even Thokolosi is running out of power. Thokolosi is a well-known evil spirit in Sotho folklore. This tricky, gremlin-like creature is blamed for mishaps ranging from everyday accidents to unwanted pregnancies and death. ’Matšeliso seemed to indicate that their optimism, solidarity, and commitment would protect them from Thokolosi. Jokingly, she looked around and shouted, as if to Thokolosi himself, Now there is no one you can strangle and kill! But before she could continue, a woman in the audience yelled out a chilling retort: Because AIDS has killed us all! While phrased as a macabre joke, her sentiment merits further reflection. Surely she was thinking of the coffins coming out of their houses in twos and threes. But she also seemed to be speaking metaphorically of the broader grievances that had plagued this community in the wake of global efforts to address HIV. We are corpses in the eyes of the government, another informant told me only a few months later. These sentiments referenced social, in addition to literal, forms of illness and death that remained untreated and underacknowledged. How could AIDS be so aggressively treated and yet said to have killed us all?

This book proposes that even as new global health initiatives treat diseases, they ignore and exacerbate other social ailments. Prominent among these ailments are political changes that have imperiled democratic processes and social solidarities in African countries where democracy and statehood are already fragile. For Lesotho’s citizens, the provision of HIV treatment alone is simply not enough. As Julie Livingston (2005, 238) observed in her ethnographic study of multiple and intertwined debilities in Botswana,

These [HIV] medications, doctors rightly stress, do not cure the disease, they only calm it, though patients, prospective patients, and their loved ones (in short everyone) will surely appreciate this powerful and much-needed form of palliation. Provision of anti-retroviral therapy only reinforces the need to accommodate a model of debility in international health, as patients taking complex drug regimens