An ethnographic account of the South African AIDS movement and activists
From the historical roots of AIDS activism in the struggle for African liberation to the everyday work of community education in Khayelitsha, Sustaining Life tells the story of how the rights-based South African AIDS movement successfully transformed public health institutions, enabled access to HIV/AIDS treatment, and sustained the lives of people living with the disease. Typical accounts of the South African epidemic have focused on the political conflict surrounding it, Theodore Powers observes, but have yet to examine the process by which the national HIV/AIDS treatment program achieved near-universal access.
In Sustaining Life, Powers demonstrates the ways in which non-state actors, from caregivers to activists, worked within the state to transform policy and state-based institutions in order to improve health-based outcomes. He shows how advocates in the South African AIDS movement channeled the everyday experiences of poor and working-class people living with HIV/AIDS into tangible policy changes at varying institutional levels, revealing the primacy of local action for expanding treatment access. In his analysis of the transformation of the state health system, Powers addresses three key questions: How were the activists of the movement able to overcome an AIDS-dissident faction that was backed by government power? How were state health institutions and HIV/AIDS policy transformed to increase public sector access to treatment? Finally, how should the South African campaign for treatment access inform academic debates on social movements, transnationalism, and the state?
Based on extended participant observation and in-depth interviews with members of the South African AIDS movement, Sustaining Life traces how the political principles of the anti-apartheid movement were leveraged to build a broad coalition that changed national HIV/AIDS policy norms and highlights how changes in state-society relations can be produced by local activism.
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Theodore Powers teaches in the Department of Anthropology and Global Heath Studies Program at the University of Iowa.
From the Preface
Anthropology, it is often said, attempts to bridge social and cultural difference in order to make ideas and practices from the Global South seem more familiar to those living in the Global North. In this characterization, anthropologists are seen to act as mediators who engage with "the other" in order to make their lives more comprehensible to northern publics. In doing so, anthropologists are imagined as bringing a set of academic practices to bear relative to the question of cultural variation by brandishing an expertise of a particular sort. Inherent in this formulation is a hierarchy regarding academic knowledge and an understanding of the broader context within which ideas and practices are situated, purportedly the purview of the anthropologist.
The situation that I encountered as I began research on the politics of the South African HIV/AIDS epidemic did not cohere with the generalized understanding of anthropological fieldwork described above. If anything, the hierarchy of expertise relative to the HIV/AIDS epidemic was reversed, as some research participants had contributed to publications in esteemed academic journals such as the Lancet. But, as I was to learn, the inverse relationship between researcher and expertise was not isolated to debates on epidemiology; it extended far beyond to the social dynamics that drove HIV infection, the politics that limited the public sector HIV/AIDS response, and the material privations that community-based HIV/AIDS activists navigated as part of their everyday lives.
Indeed, while my name may appear on the cover of this book, it is the knowledge and experiences of those who opened their lives to me that has provided the basis for the ethnography that follows. I was, and remain, a student of South African society, and those whose lives are outlined in this book are, and continue to be, my teachers. This book would not have been possible without their generosity, patience, and understanding as I learned about the everyday challenges of HIV/AIDS and the political struggle required to expand HIV/AIDS treatment access in South Africa. However, the contributions of my research participants were not limited to the gathering of data. They were also central to the research design that I employed in my work. As I describe in detail in Chapter 1, I followed the life pathways of research participants in order to locate field sites where politics, policy, and HIV/AIDS treatment access were negotiated. Thus, rather than a predetermined conception of the field and research sites, my project grew out of the lived experiences of those navigating the landscape of HIV/AIDS politics in South Africa.
Following people involved with the campaign for HIV/AIDS treatment access shed light onto how transnational forces articulate with HIV/AIDS politics, how debates on AIDS dissidence manifested in the townships of the Cape Flats, and how HIV/AIDS activists occupied the state to transform treatment access. This project—and the insights that it offers relative to academic debates on transnationalism, social movements, and the state—largely belongs to those who fought for HIV/AIDS treatment access in South Africa. I offer my deep thanks for their contributions, and I hope that I have done justice to their life histories and political campaigns in the pages that follow.
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