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.
|Publisher:||Vanderbilt University Press|
|Product dimensions:||6.00(w) x 9.00(h) x (d)|
About the Author
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.
More information about Kenworthy's work—which focuses on questions of how politics and policy relate to population health in both global and domestic contexts—can be found at http://faculty.washington.edu/njk8.
Read an Excerpt
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). 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. 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 'Mateliso, 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 'Mateliso 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 'Mateliso 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 'Mateliso, 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?
It's not [Prime Minister] Ntate Mosisili.
It's not him.
It's not these other guys.
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?
Don't they know that you are here?
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].
'Mateliso 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 'Mateliso 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 'Mateliso 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. 'Mateliso 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 will join Batswana [people of Botswana] with diabetes, epilepsy, and hypertension who are living with a serious illness transmuted by biomedical management.
In addition, HIV treatment and subsequent global health initiatives, by primarily focusing on the "biomedical management" of select diseases, inadvertently ushered in a new form of sociopolitical death, whereby citizens felt ever more disenfranchised and invisible even as they were increasingly targeted as populations for such interventions. How people are treated shifts their future expectations about what they deserve by reinforcing how much (or how little) their lives, input, and perspectives are worth. While global health repeatedly asserts the value of biological life — of bodies that can be diagnosed, treated, and thus saved — it simultaneously, and often unintentionally, reinforces the idea that the citizenship, identity, subjectivity, and social rights of people living in those bodies are worth very little. These impacts can be thought of as a type of political rather than medical iatrogenesis — a form of largely unintentional, but no less damaging, mistreatment.
Excerpted from "Mistreated"
Copyright © 2017 Vanderbilt University Press.
Excerpted by permission of Vanderbilt University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
A Note on Terminology, Pronunciation, and Spelling xv
1 Promises Unfulfilled 1
2 Democratic Deficits 35
3 Building Competent Citizens 65
4 Venerated Communities, Vulnerable Citizens 95
5 The Privileged and the Damned 127
6 Corporate Clinics and Humanitarian Consumption 159
7 Envisioning Lesotho 185