Care, Disability and HIV in Africa: diverging or interconnected concepts and practices?

Ruth Evans, Agnes Atim
2011 Third World Quarterly  
Recent research and policy has recognised the central role of unpaid care-givers (often women and girls) in providing care for people living with HIV in the global South. Disability rights perspectives, however, challenge the language of 'care' and 'dependence'. Disabled people's views have often been overlooked in global policy debates about care, while organisations of people living with HIV have tended to advocate for their rights in isolation from disabled people's organisations. Drawing on
more » ... qualitative research with women living with HIV and children caring for them in Tanzania and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. The research reveals commonalities between women with HIV's embodied experiences of a fluctuating life-limiting illness and disabled people's experiences of hidden impairments and chronic illnesses. Emotional interactions between children and parents/relatives living with HIV challenge assumptions about the 'dependence' and 'autonomy' of care-givers and care-recipients. Despite the development of interdependent caring relations, mutual trust and responsibility, both caregivers and people living with HIV in Tanzania experience 'diminished autonomy' and relative powerlessness in relation to the limited material, healthcare and social supports available in much of the global South. Learning from NACWOLA in Uganda, however, suggests that the participation of people living with HIV, including disabled people, in homebased care and in peer support groups can enhance 'relational autonomy' for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and transnational cross-movement advocacy by disabled people, people living with HIV and care-
doi:10.1080/01436597.2011.604517 fatcat:vz5zalwhu5bfff6lqc63fm5ojq