The untold stories of women in historically disadvantaged communities, infected and/or affected by HIV/AIDS, about care and/or the lack of care

Abstract

Black women in historically challenged communities in South Africa carry the burden of triple oppression: (a) the social engineering policies synonymous with apartheid have marginalised women economically and socially, (b) patriarchy, embedded in cultural and religious discourses, has rendered women voiceless and powerless and (c) HIV/AIDS targets the most vulnerable: women and children. Not only are women carrying the brunt of HIV infections, but they also carry the extra burden of caring for the sick and the orphaned. The main aim of this research was to reach a holistic understanding of the untold stories of women in historically challenged communities, infected and/or affected by HIV/AIDS, and specifically about their experiences of care and the lack of care. The two secondary aims were: 1) to research alternative ways and means of making the unheard stories known in South African society; and 2) to disseminate research findings on the stories of these women in such a way that developmental policies could be influenced to enhance alternative, holistic stories of care in the South African society. A family of three women and a translator participated as co-researchers with the writer in this research experience. The researcher reflected on the research experience with volunteers from two home-based care programs in the community. The researcher uses drama as metaphor to document her ‘colourful’ research experience and to make sense of the many intricate and intertwined narratives and discourses, documented over a period of six months in her research diary, through recorded interviews, through her participation with the co-researchers and through the ethnography she had engaged in. The research experience has found that to be able to ‘care someone else into existence’; it is paramount that you as carer experience ‘empowering care’ yourself. ‘Empowering care’ is not possible if injustice prevails. This research experience challenges Government to investigate the ethical implications of the policy of placing the burden of care for the dying and the orphans on the shoulders of women in historically challenged communities.