Researching the discourses of empowerment and self-help in people diagnosed with HIV antibodies: analysing experiences of the "hallmark" of AIDS (the t-4-cell count)

Gaining information and developing understanding about any medical condition is a central activity in self-help (Wann, 1995). Scant attention has been given to individual experiences of the technology deployed in AIDS care, as social science focuses more on gender and social policy issues with this syndrome. For example, individuals' "lived experience" of the clinical technology, such as the T-4-cell count, remain poorly understood. This paper draws on transcribed interviews with people diagnosed antibody positive, in order to analyze the knowledge and understanding of such technologies. Individuals' experiences of the "clinical reality" of AIDS (Treichler, 1992) may prove empowering but there is a dissonance with orthodox perceptions. When AIDS was initially identified, the T-4-cell count was proposed as measuring loss of immunity. This tool quickly evolved into a prognostic "test" for identifying the "hallmark" (defining characteristic) of AIDS: the reducing number of T-4-cells. Individuals report many "frames" of reference to contextualize their experiences of AIDS which contest such orthodox perceptions of the clinical reality. This self-help process parallels debates on "empowerment" both as a strategy for resistance against, or assimilation within, the dominant paradigms of thought (the "medical model" of AIDS). It is shown how discourses of people so diagnosed reveal that orthodox AIDS knowledges are representative of a science which is "dialectical/undetermined/underdetermined" (Fujimura and Chou, 1992).