"These African stories": Life, labor, and dying in northern Zambia

Abstract

This paper analyzes the effects of antiretroviral therapy (ART) on the social worlds of people living with HIV and ART (PLHA) in rural northern Zambia. Studies have demonstrated high rates of ART adherence over a range of sites in southern Africa. Drawing on a year of ethnographic research conducted in Zambia's Mukungule chiefdom between 2006 and 2008, this study investigates expectations of this exemplary adherence, and experiences of treatment failure. Motivated by the life and AIDS-related death of a Mukungule resident, Grace, it moves beyond asking "what made initial cohorts of African PLHA exceptionally adherent?" to raise the pressing question of "what happens next?" Previous scholarship addressing this question has analyzed how PLHA navigate the competing moral and political economies of local kinship and social networks and global HIV/AIDS initiatives. Scholars have emphasized the afterlives of access and adherence, looking beyond survival to what "the good life" means for PLHA, and placing PLHA at the center of action and analysis. This paper flips that script, by focusing on the stories that Grace's death spurred Mukungule residents to share. It shows how attention to and analysis of stories told not just about, but by members of PLHA's kinship and social networks, are critical to developing a more robust understanding of exemplary adherence and treatment failure. Such understanding critically depends on paying more attention to how those living with and caring for PLHA (and especially their families) facilitate PLHA's pursuit of good and "normal" lives - not just while, but also through, pursuing their own.

Keywords: Adherence; Antiretroviral therapy; Ethnography; Family; HIV/AIDS; Moral economy; Social networks; Zambia.