From “Rights” to “Ritual”: AIDS Activism in South Africa

Abstract

In this article, I investigate how the moral politics of HIV/AIDS activism in South Africa is contributing toward new forms of citizenship that are concerned with both rights-based struggles and with creating collectively shared meanings of the extreme experiences of illness and stigmatization of individual HIV/AIDS sufferers. I argue that it is precisely the extremity of the "near death" experiences of full-blown AIDS, and the profound stigma and "social death" associated with the later stages of the disease, that produce the conditions for HIV/AIDS survivors' commitment to "new life" and social activism. It is the activist mediation and retelling of these traumatic experiences that facilitates HIV/AIDS activist commitment and grassroots mobilization. It is also the profound negativity of stigma and social death that animates the activist's construction of a new positive HIV-positive identity and understanding of what it means to be a citizen-activist and member of a social movement.

Factors Related to HIV Disclosure in 2 South African Communities

“…18 Social movements such as the Treatment Action Campaign have created a "moral economy" based on altruism, affiliation, and care. Our study design made it difficult to assign the different social and political contexts of disclosure between the communities as a causal factor for the much higher rates of disclosure of HIV infection.…”

Mobilising and Mediating Global Medicine and Health Citizenship: The Politics of AIDS Knowledge Production in Rural South Africa

“…VihnKim Nguyen (2005), for example, describes 'antiretroviral globalisation' in Africa as an intervention on a scale similar to that of colonialism. Similarly, I have written elsewhere about how AIDS activists in South Africa have become part of a global health movement that has introduced new ideas about rights to health care as well as new forms of health citizenship (Robins 2004). This paper is concerned with how these global biomedical interventions are mediated by a group of AIDS activists in the rural villages of Lusikisiki District in the Eastern Cape Province, South Africa.…”

“…In addition to the infusion of these global health resources, there has been a dramatic expansion of NGOs, communitybased organisations and globally connected health social movements such as South Africa's Treatment Action Campaign (TAC). These social movements, together with NGO allies such as Medecins San Frontieres (MSF or Doctors Without Borders), mediate these new biomedical technologies of health citizenship in ways that can, under certain conditions, contribute towards the promotion of innovative forms of agency, citizenship and solidarity (Robins 2004). But this is clearly not a seamless narrative of scientific and biomedical progress and citizen empowerment.…”

“…Similarly, the 'conversion' of people living with AIDS into activists and 'true believers' of modern science and medicine can be understood as evidence of the potentially empowering and 'redemptive' consequences of access to biomedical resources. Alongside this heroic and emancipatory narrative of the progress of biomedicine and science in Africa, there is of course considerable evidence of colonial legacies of distrust and scepticism of scientific expertise (Robins 2004;Steinberg 2008a;Cassidy and Leach 2007). There is also the phenomenon of contemporary forms of globalised technocratisation and medicalisation that are generating their own resistances as part of emergent regional modernities and nationalist politics (Melissa Leach, pers.…”

“…Yet, these political demands and rights claims were somewhat clouded by former President Mbeki's AIDS dissident views and his persistent denial of the scale of the pandemic. It became increasingly clear from the former President's speeches that he believed that AIDS discourses, including those of health professionals and AIDS activists, reproduced racist and colonial assumptions about disorderly and undisciplined African bodies and sexualities (Robins, 2004;Fassin 2007;Steinberg 2008a). The former President's dissident position, and his reluctance to respond to calls for the provision of antiretroviral therapy in the public health sector, also resonated with those black South Africans who had learnt to distrust colonial and 'Western' science and medicine (Robins 2004 responses to it, were associated with the excesses of colonial domination and white minority rule.…”