Beyond Social Suffering: Rethinking Structural Violence and Care in Urban America through the Work of the Hyacinth AIDS Foundation

Abstract

The story of HIV/AIDS in the United States is a complicated one, marked by both discrimination and inaction, and activist and biomedical inventiveness. Since its official emergence in 1981, the epidemic has come to hold a multiplicity of meanings for the larger American public and diversely afflicted communities. As New Jersey’s largest AIDS organization, the Hyacinth AIDS Foundation has developed an array of services over the last three decades in an effort to both slow the epidemic and treat HIV/AIDS patients to help them live a full and dignified life. The thesis is based on ethnographic research carried out at Hyacinth’s Trenton office and is a critical review of historical, epidemiological, and medical anthropological literatures. This people-centered study keeps the social precariousness and the uncertainty of living with HIV/AIDS in focus and expands our biosocial understanding of the interface of disease, social environment, and the markers of difference. It exposes the personal effects of an entrenched and stigmatizing AIDS narrative and critically reflects on the social and political determinants of HIV/AIDS through the lens of the multi-layered care services provided by Hyacinth. While the gradients of violence and stigma addressed in this thesis will to a certain extent always permeate the experience of Hyacinth’s clients, they are also capable of disrupting harmful, discriminatory narratives, as they are encouraged to craft a new story for themselves and their peers. As shown throughout this thesis, it is the active, activist voices of the afflicted that are most powerful and that are most influential in producing tidal waves of change.