The Preservation of Bodily Integrity

The AIDS Coalition to Unleash Power, ACT UP, mounted a multi-dimensional campaign to effectively mitigate the AIDS crisis in the United States in the late 1980s. ACT UP New York emerged in 1987 when activists recognized the dire need to deal with the tragedies of the disease. While ACT UP applied pressure on the governmental institutions responsible for the insufficient response to the AIDS epidemic, their struggle is unique because the core of their mission required that they, predominantly laypeople, become experts in the science of the disease. As a group intended to act from the perspective of people who were living with HIV/AIDS (many of whom actually were), they challenged the existing structure of patients’ rights. As people living with HIV/AIDS, they had to become their own best advocates and take patient agency into their own hands. ACT UP activists understood that the two factors worsening the crisis were homophobia within heterosexist America and the reality that the virus was under-researched and subject to misinformation. By thematically separating their work into three distinct paths–– battling cultural narratives and stigma about AIDS, educating the most vulnerable communities, and challenging the medical and scientific establishment––it becomes evident their activism logically culminated in shifting patient agency and autonomy. Such activism proved necessary to successfully end the AIDS crisis. This body of work sheds light on the tension between the group’s identity and its goals. It also situates the group’s activism within the broader framework of LGBTQ+ history and patient rights.