‘The Secret is the Power, not the Knowledge’: Reconfiguring the Discourse of HIV/AIDS-related Stigma in Durham, NC

Abstract

What are the conditions in which stigma is held to be a common sense factor of HIV/AIDS, yet is mutable in the ways people experience stigma? My research analyzes the terrain in which this question is precipitated, and I will evaluate stigma as a lens for understanding broader questions of politics and care that are embedded with American notions of self-hood. The national history of HIV/AIDS, Goffman’s work on stigma, and neoliberal policies, laws, and education measures have converged to create certain imaginations of attribution and individuality for those who live with the disease. People who are HIV-positive are feared, seen as immoral and tainted, and they are blamed for contracting the virus and failing to receive the proper care. The dominant discourse creates feelings of isolation and has led to beliefs that stigma is permanent and universally affects HIV/AIDS patients, so one must remain confidential about a diagnosis for protection from stigma. From policies that move towards privatized healthcare to the rationale that stigma can be localized to a body, these aspects of life rely on ideals of self-help and have precipitated perceptions of HIV/AIDS as solely individual experiences. Instead of seeking ways to confront these perceptions, society ultimately advocates for concealing diagnoses to mitigate stigma. The localization of stigma ignores the social construction of stigma that is informed by history, culture, and power, and in this very context, my participants have demonstrated agency by disclosing their stories. By illuminating social ties through dialogue, they have contested the dominant discourse that they are secluded from the rest due to their mark of stigma. In this ethnography, then, I will explore how stigma functions and is maintained in a space where discursive practices, neoliberalism, and medical intervention intersect.