From ‘Death Sentence to Hope’, HIV and AIDS in South Africa: Transforming Shame in Context

Abstract

HIV/AIDS is one of the most stigmatized illnesses in history. People living with HIV and AIDS have been experiencing shame, stigma and discrimination and this fuelled the epidemic especially in sub-Saharan Africa including South Africa. For a long period, HIV and AIDS seemed like a death sentence. The association of HIV/AIDS with personal moral failures intensified the stigma and shame associated with HIV and undermines the rights of individuals to effective health care. And, deservingness to receive health services based on social and moral grounds discourages and marginalises individuals infected and affected by the HIV epidemic. Support groups for people living with HIV and AIDS offer arenas for addressing psychosocial issues, enabling them to resist and overcome negative stereotypes, shame, guilt and stigma. The significance and complexity of the work done by the support groups highlights the perceived lack of effective response by government to the HIV and AIDS care needs confronting communities which has left a ‘care gap’ that support groups fill. The transformative potential of HIV/AIDS is encountered in a much more localised and personalised space in support groups and those groups have evolved into major social and political movements in South Africa. First, this chapter contextualizes HIV stigma as a socio-political process. It demonstrates that HIV stigma and shame expressed and experienced by people infected by the HIV epidemic varies and that gender influences the way men and women deal with HIV/AIDS shame, and how this colours their participation in support groups. This chapter argues that more HIV healthcare resources should be channelled to non-biomedical and interactive dimensions of stigma and discrimination with psycho-social support interventions provided by the support group which is often in the periphery of health care systems. We also argue that the local contexts and understanding of the socio-cultural systems is important in transforming shame into a positive experience. We show this by demonstrating how support groups initiated by local members often in the periphery of health systems without access to specialised therapists transformed the adversities resulting from HIV into major social change and public discourse, while influencing their own lives and that of many in positive ways. We also show the value and use of visual participatory methods as therapeutic tools and for social change and illustrate how these techniques are increasingly used to share intersectional experiences and transform stigma and shame into positive experiences through creative expression.