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.
Like many in the audience, I had moments when tears flowed freely. It’s hard not to be moved by images of skeletal men, covered in lesions, being treated by personal care attendants, dragged off by police, questioned awkwardly by stuffy old newsmen, or heckled by bystanders when confronting politicians. What struck me, though, was the resoluteness of ACT-UP members when asked, “Do you expect to live?” To a person, every one of them said no. But, not one of them was content to shirk away. Rather, I saw in them an impulse to bring about something positive from their ordeal, to leave a legacy for future generations of people who may experience illness, disenfranchisement, unpopularity, or other conditions that tend to cluster around those who end up discarded by society.
During the post-viewing debrief, a facilitator asked the audience about anger, and the conversation turned to the present day, when HIV seems to inspire so little anger and outrage compared to 25 years ago. I wondered aloud, though, if we’ve over-thought the anger aspect of AIDS activism. In my personal experience, outrage has never been an emotion that can sustain me. In fact, quite the opposite—it propels me for a while, but ultimately leaves me feeling weary. Several members of the audiences nodded when I made that observation. Instead, I posited, we should consider that people were inspired to anger by the enormous disconnect they saw between their very human values (how society should treat its ill and vulnerable) and the policies and attitudes directed toward people with HIV at the time. Anger made sense at the times, but again, I wonder how we’d sustain a movement today to end the HIV epidemic with anger.
I do think, however, that there is a conversation needing to happen around inspiration. One audience member lamented the decline in AIDS fundraising such as the annual walks that still occur in cities like mine. In my previous job, I worked on a number of these events, and the declines in revenue seem real. I remember once hearing a leader in my old organization lament that we no longer had a “poster child” for our walk, since medical advances had taken away the image of frail, dying people as a motivator to donate. As cynical as that sounds, she had a point in that people tend to respond to the emotional reality of a situation. It’s perhaps not surprising that a malaise may have crept into HIV/AIDS philanthropy over time: as deaths declined and the virus became more manageable, the gripping urgency of the epidemic certainly declined in the public’s interest. But, since 2010 we’ve seen the introduction of a comprehensive national HIV/AIDS strategy, a reform of the healthcare system that promises to move millions of people into affordable care, and the first tangible evidence that medical treatment can reduce viral levels to a point where a person is dramatically less likely to infect anyone else. If we need inspiration for 2014, how about this:
We Can Win
I’ve thought about this for a while, and I seriously wonder when America’s narrative concerning domestic HIV will finally coalesce around a message of triumph. We’re not there yet, but the way forward (as long as we account for those nagging socioeconomic disparities—no small feat of course) is much more clear than at any point since I entered the HIV profession in 2001. But, I don’t think we’ve spelled it out in the simplest, most emotionally resonant terms possible: We Can Win. When I discussed this with a colleague, he asked, “Don’t you think the vision of an AIDS-free generation will inspire people?” In the abstract, I told him, maybe. At the gut level, though, it doesn’t go far enough.
I think we are at a pregnant moment in the fight against domestic HIV, and a critical part of the necessary push—the social movement that we need to carry our organizations forward—has to come from the gut level of people’s emotions. This little piece of shit virus took so many from us—friends and loved ones, spouses and lovers, mentors, teachers, and countless more. To even fathom victory, I think for many must seem like potential fool’s gold. But, an enduring lesson of HIV from its very beginning is that it has always taken more than a silver bullet or a magic cure-all. The long battle we’ve been waging (and of which I’ve only been a tiny part) has needed activists to prod politicians, policymakers, researchers, and medical providers. It’s taken kind-hearted volunteers, inspired youth, and determined elders who made sure that their loved ones’ deaths would not be forgotten. In concert, it will represent one of the most coordinated victories of the non-warfare variety that humanity has ever seen, and it will have been led in large part by those who were society’s most unwanted when AIDS was discovered. Tell people that we can win, connect that victory to the struggle of the underdog, and remember to preserve the story of those who fell along the way. It’s not as simple as I make it sound, but if you want to know what will bring inspiration back to the fight against HIV, give my suggestion a try. Tell people that, after all this time, struggle, and strife, we can finally, decisively win. I’d love to see what happens.