What it's like when the worst years of your life get rolled up into an Oscar-nominated documentary
"Remember when they burnt those people's house down?" Spencer Cox asks.
We are at a reunion dinner for about half a dozen people at a restaurant on the edge of Soho. I haven't seen him since the mid-1990s. He looks unwell. It's late September, 2012. On Nov. 30 we're on a panel together for World AIDS Day at St. Luke's-Roosevelt Hospital Center. By Dec. 18 he is dead.
I don't remember, so I look it up when I get back to D.C. In 1987, in Arcadia, Florida, Clifford and Louise Ray's house mysteriously burned to the ground after a court ordered the local schools had to admit their HIV-positive hemopheliac sons, despite community objections. Other families had already been pulling their kids out of the school, which also faced multiple phoned-in bomb threats. The family decided their only option was to give up and leave town.
This was right around the same time homophobia in America peaked, according to Gallup polling of the 1986-87 period. It was Reagan's second term, there were no AIDS treatments (AZT wasn't approved until March 1987), the Supreme Court had recently upheld state laws making gay sex a crime in the June 1986 Bowers v. Hardwick ruling, and 57 percent of those surveyed answered yes when asked if gay and lesbian relations should be illegal. Several states were actively considering quarantine measures for people with AIDS, which is to say, tearing some of their most marginalized and frightened citizens away from the only people who loved them and locking them up with strangers who considered them freaks and pariahs, until they died.
It's no wonder that when Nora Ephron had to cancel a speech at the Lesbian and Gay Community Services Center of New York in Greenwich Village, Manhattan, in March 1987, leading to playwright Larry Kramer subbing in for her, the gay and lesbian community in what was then the epicenter of the emerging global pandemic exploded. ACT UP, the AIDS Coalition to Unleash Power, was born out of Larry's call to action.
In July I sat down with a rising Harvard senior writing his honors thesis about ACT UP, and about some of the events I was part of more than 20 years ago. I realized then I'd had only four or five other extended conversations about those years over the past 15. I suppose no one talks very much as an adult about what they did as a teenager, but in truth the reality is more complicated than that. Violence, loss, trauma—all are silencing in their own way. And despite growing up under the banner of Silence=Death—heck, I'm the girl who painted those words onto a lot of the fabric backdrops you can see in the Oscar-nominated documentary How to Survive a Plague, unspooling a bolt of black canvas in my painter father's studio—I have always been reluctant to participate in the age of memoir. What the world sees as talking about history can feel very much to an individual who was part of it—that is, to me—like dwelling. And as a journalist I have preferred to tell other people's stories rather than my own.
"Others would talk about such experiences all the time," a friend IMed me after the September release of How to Survive a Plague, which tells the story of the ACT UP Treatment + Data Committee (of which I was the youngest member) and the Treatment Action Group (of which I was a founding member) and how they worked to transform the drug-approval process and AIDS research in this country, leading eventually to the availability of the only successful antiretrovirals in existence and, once the U.S. and other governments decided to put some money behind drug distribution, the saving of millions of lives around the world.
My only response to that expectation of chattiness is: not if you lived through it. I've written only one reflection on that era previously, for a book a decade ago; it took me two months to squeeze out about 1,200 words, because every time I turned to the subject I either developed such a colossal headache I had to stop, or burst into tears.
Many people who were part of ACT UP have tried to write about it in retrospect, but it took an outsider who was also invested in the story, journalist-turned-filmmaker David France, to bring the story to the mainstream, to the extent that has happened over the past year. France was one of the earliest chroniclers of the epidemic, first in the gay press and later for New York and national media outlets, and a man whose partner Doug Gould, to whom the film is dedicated, died of AIDS in 1992. France's documentary, distributed by IFC and Sundance Selects, has won a slew of awards since premiering in January 2012 in the documentary competition in Sundance, and then in theaters in September. (It's also now available on iTunes and Netflix). It's even been nominated for an Academy Award in the Documentary Feature category.
The movie focuses on three HIV-positive men to tell the larger story of the early years of AIDS treatment activism, when death came quick and violently: Peter Staley, a dynamic former bond trader who in his late 20s was given two years to live before joining ACT UP and undertaking some of its most daring and theatrical actions (if an action involved scaling part of a building or bolting yourself in somewhere with power tools, Peter was likely involved); film archivist and later MacArthur genius award-grantee Mark Harrington, the chain-smoking intellectual force behind T+D on whose amber-screened 286 computer most of T+D's giant technical documents were tapped out; and the late Bob Rafsky, a publicist turned ACT UPper who famously heckled then-candidate Bill Clinton in 1992 and was told in reply a line that would come to define the president, "I feel your pain."
Also featured are activists Jim Eigo, Iris Long, Ann Northrop, Larry Kramer, Gregg Gonsalves, Gregg Bordowitz, Derek Link, Bill Bahlman, David Barr, Spencer Cox, Ray Navarro, and myself. Plus: scientists Emilio Emini, Ellen Cooper, Susan Ellenberg and Tony Fauci, along with an array of activists who, though not named in the footage, will recognize themselves in various scenes, along with their departed friends.
I worked with ACT UP from 1988 through 1991, after which a group of the T+Ders left to start TAG, which Harrington continues to run to this day. I worked with TAG for a couple of years in college, co-founded the AIDS Vaccine Advocacy Coalition in 1995, and then left AIDS work entirely in 1997, when I moved to D.C. after graduating from college and fell into journalism. A life as a member of the chorus instead of one of the dramatis personae on the American stage seemed about my speed after what I'd seen; after all, the chorus is always still standing at the end of the play.
ACT UP was the last of the great new social movements of the 20th century, a direct descendent of all that had come before, its members trained by veterans of Stonewall, the Freedom Summer, and the grassroots creators of the women's and gay liberation movements. At its peak, it had a budget of more than a million a year—without a single paid staffer. (In fact, if I recall correctly from my days on the Coordinating Committee, the greatest regular monthly expense was the industrial-strength Xerox machine we rented to produce reports, letters, fliers, and posters.) Independent affiliates took root in more than 100 sites around the world. Roughly 1,000 people came together every Monday night in lower Manhattan in the purest example of democracy I've ever experienced, to argue, plan, cajole and flirt, before breaking for a week in which more than 40 committees and subcommittees would continue the work on everything from neuroscience to HIV prevention to housing policy.