Trauma and Growth: Impact of AIDS Activism

Abstract

Introduction 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. Methods 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. Results 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. Conclusions 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.

Portraits of Activism: ACT-UP in Retrospect

“…Interviews lasted about 90 minutes (the consent form was sent by e-mail in advance). In addition, six validated self-report scales were administered; these results were reported earlier (Rabkin, McElhiney, Harrington and Horn, 2018). Our study included only members of ACT UP/New York.…”

“…As described elsewhere (Rabkin, McElhiney, Harrington and Horn, 2018), we constructed a semi-structured interview and developed code sheets. Format included both checklists and open-ended questions, developed on the basis of pilot interviews with key informants (mental health professionals prominent in HIV research or treatment, and a former ACT UP member) as well as feedback from a community advisory board, all of whom were former ACT UP members.…”

“…Professionals and artists constituted nearly 50% of the membership. Another possible limitation is that former members who were not thriving were less likely to participate, although some with current psychological problems did so (Rabkin, 2018).…”

“…Its years of peak impact were 1987-1992. In a previous report (Rabkin, McElhiney, Harrington and Horn, 2018), we presented findings from interviews, including standardized measures for assessment, with 125 former ACT UP/New York members, during which we examined trauma sequelae as well as post-traumatic growth. We now describe interviewees' experiences and memories from those years, using their voices, to add to the literature on participatory social movements and social change.…”

Los movimientos activistas del VIH / sida en el cine

“…En este contexto, se generó una fuerte tensión con las administraciones responsables de detener el sida que provocó el levantamiento de personas afectadas, sobre todo en las comunidades gay de las ciudades de New York y San Francisco, que visibilizaron el problema mediante campañas, artículos críticos y manifestaciones 3,4 . Estos colectivos se oficializaron y se expandieron gracias a la declaración de los principios de Denver en 1983; entre ellos, el más visible y contestatario fue ACT UP, creado en 1987 3,5 . En los primeros años, sus objetivos fueron luchar en contra de la estigmatización, defender sus derechos y presionar para que se investigara sobre tratamientos más efectivos 4 , de modo que el sida supuso una encrucijada entre ciencia, política y ciudadanía.…”