met Matamela during one of my first visits to TAC’s office in Khayelitsha. A tall Xhosa-speaking black South African in his mid-thirties, his expression alternated between a broad smile and a searing gaze. As one of the senior activists at the district office, Matamela was often too busy to sit and discuss the broader politics of the South African HIV/AIDS epidemic. That night, another activist had left with the only set of keys, and we had been locked in the office due to a power failure in the township. As was the case for many homes and offices in South Africa, the TAC office had a steel gate and a locking door that had been installed to deter would-be intruders, imagined or real. As I had realized the first time I had locked a gate of this kind, the barrier not only prevents someone from entering but also restricts the movement of those inside. Now, fortunately for me, being locked in the office enabled me to learn more about Matamela’s background and his experiences confronting the HIV/AIDS epidemic.
Matamela was born and raised in the Cape Flats, a series of townships that stretch out from the Cape Town city center across a broad floodplain. Brought up in a working-class household, he was radicalized by the Soweto student uprising in 1976 and the subsequent intensification of government violence. During the late apartheid era, Matamela was a member of the Pan-African Congress, an African nationalist organization that was part of the anti-apartheid movement. He also helped to found TAC and subsequently served as a leading member for the district office and the organization as a whole. As we discussed the political history of the epidemic, Matamela underscored the significance of a TAC protest at the International AIDS Conference held in Toronto in 2006. The South African government delegation to the conference, which included the nation’s minister of health, Dr. Manto Tshabalala-Msimang, had placed garlic, lemon, and beetroot alongside anti-retroviral drugs (ARVs) in their display of HIV/AIDS treatments. Protesters from TAC, including Matamela, confronted the delegation for suggesting equivalence between homeopathic remedies and ARVs.
The health minister was part of a powerful dissident faction within the ruling African National Congress (ANC) that questioned the underlying science linking HIV to AIDS. The faction critiqued the efficacy and toxicity of ARVs, challenged the characterization of Africans as oversexualized and unable to govern themselves, and condemned the global pharmaceutical industry for profiting from African illnesses. The messages emanating from ANC members in high government positions had a tangible effect on perceptions of HIV/AIDS within TAC’s district branch in Khayelitsha. Matamela recounted:
The problem is—with AIDS, which emanates from poverty—people deny completely that they are having HIV. And these people are going to deny that there is an existence of HIV, so there is no point for them to use condoms. So the rate of infection becomes high. The death rate is huge. There are people who are delaying to start treatment. There are people in TAC who have been delaying their treatment. You ask them “why?” [and] they say that they are afraid. “Of what? Of drugs, why?” “Because the minister is saying this.”
Tell me, if people in TAC, who are more informed, are having those doubts, how much more for people who aren’t informed, who are listening only on the radio, watching the television, catching those messages from the minister of health and from the president? I stand by what I said. The president and minister of health, they need to be charged for genocide. Many people have died from AIDS because of their confusing messages.
Matamela was not alone in offering a harsh assessment of the AIDS-dissident faction within the ruling party and its effects on South African society. Its obfuscating statements on the relationship between HIV and AIDS and critiques of orthodox biomedical HIV/AIDS treatments provoked a transnational response that included American and European HIV/AIDS activists, scientists, academics, and international organizations. Within South Africa, TAC was at the forefront of the South African HIV/AIDS movement, confronting government inaction on access to HIV/AIDS treatment and highlighting AIDS-dissident attempts to limit the public sector response to the epidemic. But even an organization leading the campaign for HIV/AIDS treatment access was not immune to the broader social effects of AIDS dissidence.
A brief window of political opportunity opened because the HIV/AIDS movement’s confrontation with South African AIDS dissidents in Toronto brought intensified international attention and the minister of health left office on sick leave in the aftermath of the protest. Over the next several months, HIV/AIDS activists, including Matamela, worked with government officials to develop a new HIV/AIDS policy and revamp national health institutions to include input from the HIV/AIDS movement. Together, they made significant progress in laying the groundwork for expanding HIV/AIDS treatment access.
South African activists’ participation in the transnational HIV/AIDS movement and their convergence at strategic sites was decisive for HIV/AIDS politics in South Africa, influencing sociopolitical dynamics and shaping the campaign for HIV/AIDS treatment, often in unpredictable ways. Focusing on activists such as Matamela, this book tells the story of how the South African HIV/AIDS movement transformed public health institutions and enabled access to HIV/AIDS treatment, thereby sustaining the lives of people living with HIV/AIDS. Based on extended participant observation and in-depth interviews with members of the movement, I trace how the political principles of the anti-apartheid struggle were leveraged to build a broad coalition that changed national policy and institutions to increase access to HIV/AIDS treatment.
From the historical roots of HIV/AIDS activism in the struggle for African liberation to the everyday work of community education in Khayelitsha, I show how people and organizations negotiated access to treatment in South Africa. Sustaining Life, then, offers an on-the-ground ethnographic analysis of the ways that HIV/AIDS activists built alliances, developed new policy, and transformed national health institutions to increase access to HIV/AIDS treatment. In analyzing how encounters among activists, state health administrators, and people living with HIV/AIDS transformed access to treatment in South Africa, the book addresses three key questions: How were the activists of the South African HIV/AIDS movement able to overcome an AIDS-dissident faction that was backed by government power? How exactly were state health institutions and HIV/AIDS policy transformed to increase public sector access to treatment? How should the South African campaign for treatment access inform academic debates on social movements, transnationalism, and the state, and what insights does it provide for health care activism?
To answer these questions, my account tracks the activities of the South African HIV/AIDS movement in space, through time, and across the institutional levels of the state. Having conducted research at multiple field sites, I link social process across institutional levels and identify important sociopolitical “hot spots” where the work of transforming life possibilities for people living with HIV/AIDS unfolded. As South African HIV/AIDS activists secured the right to health for HIV-positive people, they encountered many obstacles, including a powerful bloc of ANC leaders, dissidents who promulgated the virtues of alternative HIV/AIDS treatment and obfuscated the scientific link between HIV and AIDS. In order to understand how and why the political contestation over HIV/AIDS unfolded as it did, it is necessary to first situate the epidemic within its global and regional context, and within the circuits of social inequality that pervade contemporary South African society.
HIV/AIDS, Social Inequality, and the Global South
The global HIV/AIDS epidemic is a phenomenon that is simultaneously everywhere and nowhere, contravening expectation and assumption as it manifests and necessitating a reconsideration of the foundational categories through which social scientists understand the world. The epidemic is intensely public, as evidenced through contentious debates on sexuality and public sector programs that address its social impact. Yet it is also private, via the networks of intimacy through which it is spread and through the intellectual property rights that govern access to life-extending medication (Thornton 2008). The epidemic transgresses the analytical categories of academic and social thought while exerting violence on the bodies of poor and working-class people across the world (Farmer 1992, 2004). The HIV/AIDS epidemic expanded alongside a process of increased political, economic, social, and cultural integration—what has come to be called globalization—that
