Acting up, fighting back: AIDS activism in the '80s and '90s

The other day I was leaving Moe's Books in Berkeley with a fresh-bought copy of Ann Patchett's State of Wonder in my bag when a newspaper on the free-newspapers rack by the door caught my eye. It was this week's edition of the Bay Area Reporter, and the headline article is what grabbed my attention: 25 years later, activists recall ACT UP's legacy, by longtime B.A.R. journalist Liz Highleyman.

There were a few things about this article that made me take another look, then pick up a copy of the paper and read.

First, I was involved in the early days of AIDS activism, though I worked more closely with a group called Stop AIDS Now or Else than with ACT UP per se. SANOE started as a sort of underground spinoff of ACT UP, a group that formed to plan a disruptive political action that would have been thwarted if it were planned publicly. Surprise was our friend. We surfaced for the first time to blockade the Golden Gate Bridge in 1989, and continued to work in a similar vein over the course of several years. I went to a few ACT UP meetings in San Francisco and found the scene too sprawling to feel I had a place there.

Anyway, second: it was sobering to see a political movement of which I was a part being remembered as quarter-century old history.

Third, the front page photo, snapped by photographer Rick Gerharter (who I remember as a camera-wielding fixture at demonstrations in the 1980s) included two people I recognized immediately. One was an old friend, comrade, and fellow student of Tai Chi whom I haven't seen in quite a few years. The other was a former lover, who lost his war with HIV not many years after our brief relationship.

The article is a well-drawn encapsulation of a political movement that substantially changed how people relate to doctors and the health-care industry in the U.S. Before ACT UP, people by-and-large trusted their doctors to know best. Doctors and scientists were the ones with the training, the degree, the authority. Since ACT UP, and especially now with the help of the intertubes, patients advocate for themselves individually and in organized groups. ACT UP was a game changer in the history of U.S. health care, and, as Highleyman's article points out, a deep and lasting influence in late-twentieth and this century's U.S.-based social justice movements.

But the photo also served to remind me that an inescapable legacy of that era is the loss of friends, lovers, and comrades who didn't survive the ravages of AIDS. Everybody of a certain age, in pretty much any of my circles -- professional, political, artistic, local -- can reel off a long, sad list of friends and lovers who died way too young. These many years later the wounds are old scars, the sort one has learned to live with. David S-- was in his early thirties when we were an item, and he gave me a hard time when he imagined that I imagined him perhaps a smidgen too old for me. I was six or seven years younger.

Not long afterward David was gone. Nowadays, "early thirties" strikes me as wet behind the ears more often than not.

David had an empowering time at the October 1988 ACT UP demonstration at the offices of the FDA in Rockville, Maryland, which is where the image accompanying this week's B.A.R. article (and this post) was photographed. As a souvenir he brought back one of my all-time favorite Demonstration Chants In History. When police readied themselves to haul away protestors blockading the FDA building they donned rubber surgical gloves, to protect against the imaginary danger of becoming infected by touching someone infected with HIV. In response, demonstrators scolded them for their distressing fashion faux pas: "Your gloves don't match your shoes! Your gloves don't match your shoes!"

Nothing like a little farce to lighten up a demonstration about life-and-death access to health care.

It turns out you can glimpse David S-- speaking to a camera through the narrow window of a police bus after his arrest outside the FDA headquarters in How to Survive a Plague, a film directed by David France that chronicles AIDS activism in the U.S. The film showed at Sundance earlier this year, and this weekend in Manhattan (it'll also be shown at MOMA in New York tonight at 6pm Eastern). The film will soon be broadly released.

Amy Goodman interviewed the director and founding ACT UP member Peter Staley this past Friday on Democracy Now! David S--'s few seconds in How to Survive a Plague is excerpted at ~37:30 of the DN! video, embedded in the linked article. Says Peter Staley toward the end of the interview with Amy Goodman: "Anybody who wants to change the world should run to see this film."

David S--, Stephen, Jason, Jay, Bob, Roger, Colin, David E--, Paul, Tom ... and so many more. Gone, but not forgotten.



Thanks to friend, fellow-writer, and longtime comrade in the AIDS movement and beyond, Kate Raphael -- quoted in this week's B.A.R. article -- for calling my attention to Amy Goodman's interview on Democracy Now!