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HIV/AIDS created spaces in which to provide mutual support, information exchange, and
advocacy, guided by their own needs and experiences. A PWAC/NY informant, explaining the
group’s philosophy, defined it as “a safe place for people to come in and deal with their issues.”
A former PWAC staff member, later working at the Community Health Project, recalled the
PWAC experience as particularly “compelling
…
It was very exciting to see people taking charge
of what was going on with them and not be victimized by it” These personal support efforts also
fostered connections among therapeutic communities, developing AIDS support groups through
agencies like the Manhattan Center for Living, and later AIDS therapy groups at Friends In Deed
(FID).
The support organizations encouraged people with HIV/AIDS to plan for their lives, and
to take charge of their treatments, which helped to generate an aggressive patient advocacy
movement. The movement, according to a PWAC/NY source, was “unique because we listen to
what [health authorities] say and use it in our newsletters.” But the empowerment movement was
also premised on an active distrust of the motives of state agents. For many newsletter readers,
the clinical data produced by the National Institutes of Health wasn’t validated until it passed the
community-based review represented by PWAC publication.
The state had been active in research and epidemiology, but had not sought the few
contacts they had among the affected communities, and didn’t always know what to do with them
once they had been established. “Leaving the male gay community to respond to the AIDS crisis
meant that the state with all its resources was allowed to take a distancing role, emphasizing
coordination rather than direct service when it finally did have to act” (Perrow and Guillèn
1990:83). An activist with whom I spoke stated that in the 1980s “there was a sense of
Convention