Date Published: May 24, 2018
Author(s): Judith G. Rabkin, Martin C. McElhiney, Mark Harrington, Tim Horn.
Our goal was to assess the long-term impact of AIDS activism of ACT UP/New York on the current adjustment of those who were members during its peak years (1987–1992), including assessment of trauma sequelae as well as posttraumatic growth.
A 90-minute semistructured interview and 6 validated self-report scales were administered. We relied on purposive and snowball sampling to recruit potential participants. Areas covered include demographics, ACT UP participation, and psychiatric problems. Self-report scales provided approximate diagnoses of PTSD and depression, as well as coping, optimism, and related concepts.
Participants included 102 men (40% HIV-positive) and 23 women. Seventeen percent reported current symptoms suggesting PTSD, slightly above the range in general population studies. Symptoms consistent with depression were reported by 8% overall, with higher rates for HIV+ men. Enhanced sense of self, belief in change, and empowerment were reported by 93% of respondents, independent of concurrent PTSD or depression.
Twenty-eight years later, ACT UP study participants recall their activist days during the AIDS epidemic as the peak experience of their lives. While some continue to have symptoms of stress and depression, most found that their activism has enriched their subsequent lives.
In the early years of the HIV/AIDS epidemic in the United States, activists played a unique and unprecedented role. Confronting a new, lethal, and highly stigmatized disease, they became caregivers, advocates, “citizen scientists,” and the voice of an outraged community . While the history of organizations such as ACT UP (the AIDS Coalition to Unleash Power) continues to be documented , the long-term psychosocial effects of AIDS activism on activists themselves have yet to be well studied. What happens when members of a marginalized community, threatened both by a rapidly fatal disease and by an unresponsive government, organize to fight for survival and survive? We examined the prevalence of posttraumatic stress disorder (PTSD), depression, and posttraumatic growth among men and women who participated in ACT UP between 1987 and 1992.
Our findings support the notion of posttraumatic stress responses and posttraumatic growth as independent, parallel dimensions rather than endpoints in a single continuum. Taylor’s  cognitive adaptation theory proposes that the adjustment to traumatic events includes three components: search for meaning (also cited in Folkman’s expansion of her theory of stress and coping ), an attempt to regain control, and an effort to improve self-esteem. All three of these themes are expressed in responses (Table 6) to our query about the impact of ACT UP on sense of self.
To our knowledge, this is the only study exploring the long-term impact of AIDS activism; its sample size and robust data collection make it a valuable contribution to the literature. Limitations include nonrandom sampling, although the demographics of our sample are roughly equivalent to those noted in a 1989 survey of 413 ACT UP/NY members conducted by Elbaz  in which 92% were white and 20% were women. Study participants may not represent the full spectrum of distress and disability since those who are doing better may be more likely to volunteer.