Imagining a right to health: HIV/AIDS, subjectivities and notions of entitlement

This research is an investigation into how the subjectivities of people living with HIV/AIDS (PLWHAs) are shaped by their illness and how this ultimately influences their conceptualization of entitlements and rights. It achieves this by analyzing the broader historical and modern contexts in which the Kenyan PLWHA’s sense of self is constructed, including the norms on which attitudes about AIDS and those who suffer from it are grounded. As part of this analysis, the research also probes the intricate power dynamics and systems of privileges and obligations that bind individuals to their wider social network, including the family, community, and the State. It then looks at the responses of PLWHAs interviewed for this research in order to examine awareness about human rights, which health entitlements they claim (and which they do not), from whom and why. What emerges is an insight into how members of this sizeable population locate themselves within their wider socio-economic matrices; how HIV infection often then dislocates them; how they imagine their resultant entitlements; the competing moral frameworks of reference on which they base such claims, and last, but not least, the language they use to articulate them. As this research contends, the human rights paradigm is not the sole, or even the dominant, framework of reference by which Kenyan PLWHAs or laypeople more generally imagine and articulate their grievances and entitlements. Further, how the PLWHAs at the heart of this research incorporate human rights norms and how they attempt to reconcile the tensions and contradictions in these competing frames of reference illuminates the way in which the HIV epidemic has shaped the human rights discourse. Moreover, it highlights the often-ignored role of laypeople as agents in the advancement- or not- of the broader human rights project. As the research concludes, proponents of human rights have much to do to promote its norms and cultivate support for it in the grassroots. They would do well to understand the complex processes by which laypeople’s notions of entitlement are constructed, and the pivotal role their varied subjectivities play.