Portraits of Activism: ACT-UP in Retrospect

Abstract

We present members’ recollections of their ACT UP participation from the early years of the AIDS epidemic. ACT UP had a major impact on public opinion, government action, and the design and conduct of clinical trials. While the historical setting was distinctive, lessons can be learned for contemporary social movements. We interviewed 125 members of ACT UP, using a semi-structured interview including both scales and open-ended queries. We asked the following: Why did they join? What did they do? Why did they leave? What do they most miss? What were the best and most difficult aspects? Major findings include the following: Members sought, and found a community of like-minded people sharing a primary goal: to find treatments and end the epidemic. In terms of what they missed, many spoke of the camaraderie, support and group cohesion. Communication choices have expanded since the early days of ACT UP’s weekly meetings; new technologies have multiplied. Nevertheless, ACT UP remains a model in terms of its sustained local social networks, publicity-generated attention to a focused agenda, meticulous preparations for actions and public relations, and educated recommendations for solutions. Inclusion of voices of those whose welfare is at issue can be a powerful tool for change.