From Anger to Inspiration?

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.

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Returning to Stories

It’s that time of year when scholarship applications come due, which has given me an opportunity to revisit parts of my own story as it has evolved over the course of my adulthood. In some ways, my work has been closely tied to storytelling ever since my early years at Michigan State, where I co-founded a queer student magazine that emphasized first-person writing and thought-provoking conversations about people’s true lives and experiences. That experience came in handy over my career as I moved from publishing (not what I thought it would be) to social work and community organizing. At different points in my work I’ve had opportunities to use storytelling as a strategy for building programs and/or participation. For a while I was able to re-create the magazine format for an HIV prevention publication, which brought to light rich stories about participants’ lives, their struggles, and their self-conceptions of being queer, sexually active adults in a complicated, sometimes contrarian society. Eventually, though, the emphasis shifted as I was asked to do more formal work like grant writing, often using formulaic templates that the agency had copied and resubmitted as rote for several years.

Recently I was looking back on a scholarship application I submitted a couple years ago, while I was still working for that particular nonprofit. I didn’t receive any funding from this program, and in retrospect I see why. My responses to the essay question, while not bad, were also not terribly compelling. I’d written a laundry list of my achievements similar to the formula I saw my agency use for those fairly rote, mundane grant proposals. Reading through that essay again, I saw that it lacked a story, a meaningful narrative that traced my growth and development over time. There was no sense of past struggles, transformation, or self-revelations, only “I have accomplished this, and your money will help me do this…”

In my experience, the power of a story comes from the key moment when we find ourselves in someone’s narrative—being able to relate to the challenges presented, locate our feelings and do a self-appraisal, and then weigh the plausibility of the resolution (if it’s even achieved). When it comes to grants and scholarships, I think the key question for review committees would be whether the story presented is compelling enough for them to commit their funder’s resources, i.e. seeing a fit for themselves in the story. In research, I think it’s similar in that we are again trying to convey the investigation’s story in a way that demonstrates transparency and plausibility—the leaps we make in drawing conclusions have to be grounded in the best evidence available. Interestingly, as I barrel toward starting my dissertation I find myself returning to the essence of storytelling as the core focus of my work. While I’m not sure I really strayed too far from this endeavor, I know that for a while I felt too caught up in following the technical conventions of work and school to really see how essential these elements have always been to my work.