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Beyond the disease of discrimination: a critical analysis of HIV-related stigma in KTC, Cape Town

Elizabeth Mills

University of Cape Town

CSSR Working Paper No. 100, December 2004

Posted with permission of the Centre for Social Science Research, University of Cape Town.
Further details on the work of the Centre can be obtained from:
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The aim of this paper is to explore the nature and dynamics of HIV-related stigma in the KTC with a view to understand the impact of stigma on the lives of HIV+ people and their social environment. This paper draws on qualitative research methods, including focus groups, interviews and participant observation. Research was conducted in KTC, a shack settlement in Cape Town, with a group of home-based carers, and their HIV-positive clients, in 2003 and 2004. The complex matrix of factors, like socio-economic and gender inequality, which perpetuate HIV-related stigma in the context of KTC, is explored through this paper. This paper argues that social networks in KTC can play both a constructive and destructive role in facilitating care, and HIV-related stigma respectively. Finally, the research and findings of this paper point to the need to shift away from the notion that stigma is experienced by the individual to a more multifaceted understanding of the impact of HIV-related stigma on the HIV+ individual’s social environment.

HIV is an epidemic of global proportions and at the same time it cuts into the heart of individual experiences of illness. In South Africa, despite significant changes that have taken place in the last eleven years of democracy (for example the transformation of the public health care system), people are still dying of AIDS-related illnesses when they could be living healthy lives with the assistance of antiretroviral treatment and adequate food. Another significant aspect of the HIV epidemic, nationally and internationally, is the extent to which individuals and their families are affected by stigmatising discourses and behaviours.

This paper aims to bring out some of the experiences of people living with HIV, or dying of AIDS-related illnesses in KTC, an informal shack settlement in Cape Town, South Africa. The research that forms the basis of this paper was conducted in 2003 and 2004 with a home-based care (HBC) organisation, called Luvuyolwethu. This organisation provides HBC for over 80 HIV+ people living in KTC. The experiences of both the carers and the clients of Luvuyolwethu form the basis of this critical exploration into the myriad ways in which the HIV epidemic plays out in the lives of HIV+ people and their families, and focuses particularly on the shape, derivation and consequences of HIV-related stigma in this area of South Africa.

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