the Female Body GOVERNING

92
samantha king
question burgeoning health-care costs; and revelations of ethical abuses
in clinical trials and other forms of medical experimentation led to
campaigns for informed consent legislation (Epstein, 1998). From these
forces emerged a greater skepticism of medical experts and a shift away
from established notions of the “proper” medical patient as passive,
unquestioning, and deferential.
The AIDS movement that took shape in the 1980s, however, really
revolutionized the possibilities for disease activism in the United States.
Rather than acting as what Steven Epstein (1998) calls a “disease
constituency,” which primarily functions to pressure the government
for more funding, the AIDS movement became an alternative basis
for expertise. In contrast to other models by which they could have
positioned themselves in relation to medical science, AIDS activists did
not reject science or seek to show that science and truth were on their
side, but rather staked “out some ground on the scientists’ own terrain”
(p. 13). In other words, they fought AIDS both from outside and within
medical science, as they questioned the uses, controls, content, and
processes of scientifi c practice, they also claimed “to speak credibly as
experts in their own right” (p. 13). As such, according to Epstein, it
became the fi rst social movement to actually undertake the transformation
of “disease victims” into “activist-experts.”
The efforts of activists to be involved participants in AIDS research
and policy were inextricably intertwined with their struggle to eschew
the widely held understanding of people with AIDS as “victims” of
disease. Activists rejected this label arguing that it elicited fear and pity,
suggested inevitable death, allowed “spectators” to distance themselves
from those with the disease and thus remain passive, and connoted
some character flaw or bad “lifestyle choice” that had invited the
tragedy to befall them (Navarre, 1988; Zita Grover, 1987). Moreover,
Max Navarre described how the fear and hopelessness that stem from
constant reminders that “you are helpless, there is no hope for you”
easily lead to despair (p. 143). Navarre and others aimed to enable
people with AIDS to understand themselves—and for others to in turn
understand them—not as the condition but as people with a condition.
Self-empowerment, he and others believed, breeds hope, and “hope
is one of the greatest healers” (p. 144). On the basis of such beliefs,
in 1983 the National Association for People With AIDS adopted the
Denver principles that declared that people with AIDS had the right
and responsibility actively to determine their own experience with the
syndrome. The opening declaration of the principles reads as follows,
“We condemn attempts to label us as victims, which implies defeat, and
we are only occasionally ‘patients,’ which implies passivity, helplessness,