Framing rights and responsibilities: accounts of women with a history of AIDS activism

Abstract

Background: In South Africa, policy with respect to HIV/AIDS has had a strong rights-based framing in line with international trends and in keeping with the constitutional overhaul in the post-Apartheid era. There have also been considerable advances since 1994 towards legal enshrinement of sexual and reproductive health rights and in the provision of related services. Since HIV in this setting has heavily affected women of reproductive age, there has been discussion about the particular needs of this subgroup, especially in the context of service integration. This paper is concerned with the way in which HIV positive women conceptualise these rights and whether they wish and are able to actualise them in their daily lives.

Methods: In 2003 a group of women involved with the Treatment Action Campaign and Medicines Sans Frontières participated in an initiative to 'map' their bodies as affected by the virus. A book containing the maps and narratives was published and used as a political tool to pressure the government of the day to roll out antiretroviral therapy (ART) to the population. In 2008, the authors coordinated an initiative that involved conducting follow-up in-depth interviews in which five of these women reflected on those body maps and on how their lives had changed in the intervening five years since gaining the right to treatment through the public sector.

Results: Drawing upon this qualitative data and published sources, these new accounts are analysed in order to reflect the perspectives of these women living with chronic HIV with respect to their sexual relations and fertility desires. The paper reveals difficulties faced by these women in negotiating sexual relationships and disclosure of their HIV positive status. It focuses on how they perceive relative responsibilities in terms of taking preventative measures in sexual encounters. Women adopt tactics within a context characterised by various inequalities in order to 'make do', such as by remaining silent about their status. Concerns about childbearing can be addressed by information and support from a health care worker.

Conclusions: Women's experience of HIV as a chronic illness and the need to adhere to ART, is linked to the way in which the language of responsibility can come to counter-balance a language of rights in treatment programmes.