Shared secrets – concealed sufferings : social responses to the AIDS epidemic in Bushbuckridge, South Africa

Abstract

From the early 1990s, rates of HIV infection increased dramatically in South Africa and by the early 2000s, AIDS emerged as the main cause of death for adult South Africans. During the first half of the 2000s, the South African government’s response to this crisis was inadequate, marked by denial and delays in implementing prevention and treatment, resulting in thousands of preventable deaths. Yet, apart from the challenges posed by the predominantly urban-based Treatment Action Campaign (TAC), the absence of a social response to this crisis is notable, especially in rural settings. This scenario forms the broad backdrop to this ethnographic study that draws on participant observation and interviews undertaken over a three-year period (2002-2005) in KwaBomba village previously in the Gazankulu Homeland, now located in the Bushbuckridge municipality of the South African lowveld. An ethnographic perspective provides an intimate vantage point from which to view peoples’ experiences of the AIDS epidemic and their responses in context. This perspective draws attention to gaps in public health and biomedical understandings of the epidemic and suggests alternatives to these understandings. In Bushbuckridge, mortality and morbidity due to AIDS became visible in the late 1990s and early 2000s. Households were incapable of dealing with the burden of illness and death while the health services were often unwilling and ill-prepared. HIV prevention campaigns based on individual behaviour change were not well suited to a context in which HIV spread through sexual networks. Despite widespread awareness of the threat of AIDS, the disease was subjected to public censorship and AIDS suffering was concealed. Public discourses of AIDS were hidden within gossip and rumour and articulated as witchcraft suspicions and accusations. Although these discourses appear to deny and suppress the reality of AIDS, I suggest that they are active attempts to deal with the AIDS crisis: gossip and rumour allocate blame and construct a local epidemiology through which the epidemic can be surveilled; interpreting AIDS as witchcraft creates the possibility of avenging untimely death. These discursive forms are critical in informing individual and social responses to the AIDS epidemic. While the absence of public acknowledgement of AIDS as a cause of illness and death suggests denial and fatalism and appears to limit public action, subaltern discourses create shared secrets to manage the AIDS epidemic at the local level. Furthermore, these discourses may constitute a form of resistance against biomedical models of causality. Ethnographic enquiry at the local level offers a nuanced understanding of social responses to the AIDS epidemic. By examining forms of expression that lie outside the domain of public health, the thesis reveals how these constitute significant forms of social action in response to the epidemic.