AIDS Activism

A survey experience within Act Up-Paris, an association for the fight against AIDS, raises once again the longstanding question of the link between scientific research and involvement in the specific case of an ethnographic survey of activists. In this case, the task of the ethnograph is conditioned by close connection with the actors, which facilitates his immersion while being highly conducive to active involvement. The position of a participatory observer, far from being exceptional, proves to be emblematic of the tensions between distance and involvement that shape the activist experience.

Une expérience d’enquête au sein de l’association de lutte contre le sida Act Up-Paris permet de reposer la question classique du lien entre recherche scientifique et engagement, dans le cas précis de l’enquête ethnographique en terrain militant. La tâche de l’ethnographe se trouve ici conditionnée par une proximité d’habitus avec les acteurs, qui facilite son immersion tout en l’exposant à de fortes incitations à l’action. Loin de faire figure d’exception, la posture d’observation participante s’avère emblématique des tensions entre distance et engagement qui façonnent l’expérience militante.

Aldyn McKean (1948-1994), a gay rights and AIDS activist, was a founding member, spokesman, and grassroots organizer for ACT UP. He represented that organization, among others, at international AIDS conferences and demonstrations. His papers consist of administrative files, writings, correspondence, printed matter, video recordings, and artifacts documenting his participation in several AIDS activist organizations, including ACT UP New York, United for AIDS Action, and Third Wave International, as well as a small amount of personal papers.

This article revisits activist ethnographer George W. Smith's intellectual and political legacy, with a focus on his engagement with and conception of "life work." In the context of the AIDS crisis in the late 1980s and early 1990s, Smith contributed to reframing the way in which AIDS was problematized and confronted. Rather than treating people living with HIV/AIDS as "disease vectors" to be isolated from the general population, as had been the case under the prevailing public health regime, he started his research and organizing from the standpoint of people living with HIV/AIDS-investigating the everyday work that they did in accessing the services that they needed in order to survive. Drawing from archival research, activist interviews and his published works, this article traces how Smith deployed the concept of life work in his research as part of the "Hooking Up" Project, in his public writing in the gay and lesbian press, and in his organizing with AIDS ACTION NOW! in Toronto. Beyond the reproductive labour of individuals in accessing particular politico-administrative regimes, which Smith focused on in his research, we explore how life work can be theorized more broadly to include collective efforts to confront social, biomedical and institutional barriers to living. Hence, in considering Smith's AIDS activism, we argue that his theorizing and political organizing, taken together, should themselves be seen as forms of life work.