I spent last weekend at the National Conference on Social Work & HIV/AIDS, a nicely organized event that seems to attract the kind of people around whom I want to be—smart, dedicated, compassionate, enthusiastic about their work, and self-reflective. The audience is part academic, part professional; in other words, a good place to test out the concepts behind my dissertation research. It was gratifying to see echoes of my topic—organizational change in community-based AIDS organizations—throughout the presentations. I was also pleased to find others who share my own interest in history, both in the development of these services and in their origins within the gay and lesbian community of the 1980s and earlier. (I say “gay and lesbian” here knowing that our current nomenclature—GLBTQIA—recognizes a much broader spectrum of identities.)
The conference also afforded me the chance to see How to Survive a Plague, a documentary using original film footage of ACT-UP, the grassroots movement led by HIV-positive activists, which radically altered the trajectory of America’s response to the AIDS epidemic. I have to confess, I’d avoided seeing the movie before this, even though plenty of friends had recommended it to me. My response to it was as emotional as I’d expected. It was probably a mistake to watch it right before my own presentation, but on the other hand, it grounded me back in the reality of my research question: How do services founded by and for the grassroots HIV movement experience change in the age of ACA?
Anyway, I digress. The film mostly focused on the years 1989 to 1995, from the first Bush presidency up to the introduction of combination anti-retroviral therapies, which seemed almost immediately to bring patients back from near death. Much of the film depicts the push and pull of grassroots politics at the time—people screaming to be heard, to have their fears and outrage acknowledged not just in the hearts and minds of bystanders, but in the policies and practices of government, medical research, and the pharmaceutical industry of the time. As Randy Shilts noted in And the Band Played On, the usually deliberate pace of clinical trials, testing, and approval for market use were not going to cut it when the world faced a pandemic of this scale. It took bold confrontation, impassioned actions, and dedication from those facing almost certain death to move the status quo to change. The fact that some of the original ACT-UP activists—including the legendary Larry Kramer, among others—today have survived speaks loudly to their accomplishment. Medical science today is winning the battle against HIV in controlled lab settings, but a social movement that connected these institutions to this deeply affecting human narrative was absolutely necessary to prod our civic leaders to move faster, with any urgency that no one would have believed necessary in previous decades.