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invoked medical authority over patient groups, but those who treated HIV/AIDS as a medical
issue rather than a psycho-spiritual one, and those who have fostered the “myth” that HIV causes
AIDS. Opposed to all of those whose work defines “the AIDS zone,” the mental-physical
location where belief in one’s own illness leads to symptoms of HIV/AIDS, HEAL necessarily
did not foster close relations with state agencies.
The earliest HIV/AIDS community-based organizations in New York City all approached
AIDS as a crisis of health and health care. They defined their own work in relation to the
agencies of the public health sector. Even HEAL was merely alternative, not oppositional. From
the first days, and through the first years, the community-based mobilization in response to
HIV/AIDS could have been incorporated into public, state-centered efforts. But there was not
enough of a public framework for this to happen, and so they remained apart.
Once the groundwork had been laid, the active community had an organizational space in
which to think about, discuss, and create the field of AIDS work. They sought information from
the government, and received little. They sought support, and got less. Gradually, in this
collective space, the organized community became self-supporting and self-generating. Rather
than merely filling in until the health sector could get organized, the community sought to take
control of HIV/AIDS work. Several informants for this study have indicated that they had been
aware of HIV/AIDS for years before volunteering anywhere, but that they had assumed “it would
be taken care of.” (As one early volunteer, later a professional staff member at a different NPO
expressed it, “I kept thinking I would go back to being an actor.”) Early network growth
depended on the active community’s realization that it was not being taken care of. They began
to develop an oppositional consciousness. This consciousness fostered the growth of an “AIDS
Convention