The direct-action group that revolutionized patient advocacy began with strong convictions-of both the political and police variety
It's a little past 7:30 on a Monday night and damn, I'm late again. By the time I arrive at the Lesbian and Gay Community Center on New York City's 13th Street, there's already a line spilling out the first-floor assembly hall. I inch my way past the information table, grabbing fistful's of fliers and fact sheets, and tread my way through the crowd. "Honey!" (big kiss), "God, can you believe it?" (Small wave), "I'll talk to you later."
The room is packed, as usual, with short-haired muscle boys and power dykes, stockbrokers in suits and carpenters in flannel, writers, graphic designers, college students and hmmm-who's that? Maybe I'll just put my stuff down over there.
"Welcome to ACT UP, the AIDS Coalition to Unleash Power," shouts the evening's facilitator, a cute dancer with two-day stubble and dangling earrings. "We are a diverse, nonpartisan group of individuals united in anger and committed to direct action to end the AIDS crisis. We protest and demonstrate; we meet with government and public health officials; we research and distribute the latest medical information; we are not silent."
And so begins another three-hour festival of passionate oratory, inane argument and Robert's Rules of Order. ACT UP meetings are long, loud and loaded with process. Everyone has input-and God knows everybody has an opinion-and yet week after week, zaps are planned, strategies discussed and information imparted. Perhaps we can do it because each week also brings another round of obituaries.
It's been 10 years since ACT UP first took to the streets on March 24, 1987, disrupting rush hour on Wall Street to protest the murderous policies of the Reagan administration, the unavailability of promising AIDS treatments and the high cost of AZT. Since then, ACT UP has "Seized Control of the FDA" and "Stormed the NIH." We've kissed-in at Republic conventions, sat-in at the Centers for Disease Control and died-in at a world-famous cathedral. We've marched for increased funding for AIDS services and rallied for housing for homeless PWAs. We've organized needle-exchange programs, appeared on scientific panels, distributed safe-sex information to teenagers and testified in front of government commissions.
Through it all, ACT UP has remained unique; An all-volunteer, grassroots organization founded around action, not ideology; a family; a community; a non-alcohol cruise bar; a queer high-school-we-never-had. It's been a place where each of us could channel our rage, talent and creativity into the fight against AIDS; where we could put our bodies on the line-confronting presidents, scientists, pharmaceutical companies and an often uncaring public-to demand attention be paid and immediate action be taken to end the AIDS crisis.
What follows on these pages is a snapshot of the first years of ACT UP told in a collage of buttons, photos and headlines. POZ recently gathered a number of ACT UP veterans together for a photo shoot, and I had the opportunity to ask them about their experiences with ACT UP; you will find some of their comments here as well.
What follows directly below are excerpts from personal letters written from 1987-88 by founding member Bradley Ball, an administrator at NBC, to a friend and sometimes lover in Vancouver. Bradley was ACT UP's first secretary and administrator, a position he sumbled into at the group's very first meeting, when he was handed a sketch pad and a pen and asked to take notes, and which he then held for the next year and a half.
It had been his hope to edit these letters into a first-person narrative of the organization-a window into the early day-to-day struggles of ACT UP in the time before AIDS commanded office spaces, million-dollar fundraisers and widespread media recognition-but Bradley died before he was able to finish this project.
March 17, 1987
Dear Donald: It would be some wonderful thing to have a large crowd [for the Wall Street demo] on Tuesday, but I don't really foresee that happening. It would be enough-just enough-to have a hundred people (after all, we're talking 7:00 a.m., we're talking winter, we're talking Wall Street), but that might lead to an uncontrolled slaughter. The dark mutterings range from sitting down in the street to human catapults over the police lines. The activists each seem to have their own "secret plans," and so we're converging at Trinity Church with any number of factors and wild cards.
And me? Am I a dilettante masquerading as a concerned observer? I certainly don't qualify as a revolutionary, though I've heard some people with fewer qualifications make the same claim.
April 30, 1987
Dear Donald: I have spoken of my friend Victor, who died last December. He swore his friends to secrecy about the true nature of his constant hospitalization. I wondered then and wonder now how somebody who was once so active in gay liberation and black liberation would have, at the end, bought into the stigmatization of AIDS.
And last week at dinner, one of the fellows on the Issues Committee, Herb, told us about a friend of his who was extremely active in the anti-war movement of the '70s. This guy traveled around with large amounts of explosives but folded up his tent and became extremely inactive when he was diagnosed with KS. And then there was an older black man who served on jury duty with me. He told me he'd done all of his fighting when he was younger and just couldn't do it any more.
I thought about all of this on my way to work today. I wondered why was it that, for Victor and for Herb's friend, AIDS was more paralyzing than anything else? A war, of course, has to end sooner or later. AIDS is inexorable, deeply personal and ultimately fatal. Perhaps what made them balk was not so much AIDS as mortality itself. And maybe it's like the man on jury duty said: When things never seem to get any better after so much energy and work, then what's the point?
Then somewhere between Eighth Avenue and Broadway, I remember something my humanities professor in Tulsa once wrote to me: "Keep your hand on the crank. Some days it turns more easily than others."
Perhaps this sounds a bit nutty to you. Honestly, it sounds pretty nutty to me. But, by God, I gave in to despair for several years because I thought despair was truth. I was, as most people point out, a tiresome cynic. The fact is, I gave in to despair because it was easy, because it required no action, no commitment. I'm finding out now that commitment is hard and apparently unrewarding work.
I am also behaving like a foxhole convert-thoroughly convinced of the righteousness of my actions, extreme in my opinions and trying to pull everyone else along with me.
But the facts also remain that my work with this organization is, indeed, good, worthwhile work; it is, indeed, action as opposed to immobility; it is an attempt to confront AIDS rather than succumb to fear. And in the process, I am meeting good and courageous people.
May 25, 1987
Memorial Day (Observed)
Dear Donald: At 8:00 a handful of peole clustered at Sheridan Square and sang a pretty song and lit candles. Then they encircled Sheridan Square Park and stood in silence for 30 minutes and then a bugler played "Taps." Gerry participated. Steven Webb participated. David Erwin and John Mullineaux participated. I don't know where Michael Rosano vanished to. Michael Savino and I continued to hand out leaflets for the Washington demonstration. I had intended to participate, but I simply could not.
The opening lines of the pretty song:
We are a strong and gentle people, Singing, singing for our lives.
The song is subtitled "Song to Remember Harvey Milk." What a goddamn horrible way to remember Harvey Milk! That man was gunned down in cold blood by somebody who was let go scot-free. How can we be singing for our lives?
I'm so upset. Every time I calm down, something jolts me again. My God, I'm getting as crazed as Larry Kramer.
I've spent this weekend on street corners and in barrooms confronting apathy and hostility, and now I find out we're singing for our lives. Michael said we should be discussing the latest Broadway musical. Gerry said that would be Les Miserables, which was about real revolutionaries. Oh God, I'm tired and angry. I've been living AIDS for so long.
On my way home I remembered what I heard John Rechy say in 1980: That gay people are the only minority group bound and determined to demonstrate how happy they are.
I saw in the Town and Country Bar and wanted a drink, but I knew I couldn't do that anymore. And I wanted somebody to take me home and simply hold me, but I knew I couldn't do that. I've done all that, and I know they don't really work as even temporary palliatives.
I wanted to discuss Broadway musicals.
And I want to participate in candlelight vigils instead of handing out leaflets. And I want to hand out free booklets, like the GMHC boys who shared our street corner yesterday, instead of asking people to sign a petition. I don't want to be a crazy radical. I want to ride the bus to Washington and march around for a while and get back on the bus, just like I did in 1979, instead of working the logistics and handing out more leaflets.
And, more than anything else, more than anything else in the whole wide world, I want my blood to be clean. I want to go back to that mysterious time when I didn't have this virus inside of me that it slowly and surely and quietly destroying my system. I want out.
Goddammit, I'm so fucking angry! Stonewall was supposed to bring us out of the closet and into the streets. In 1977 it was Anita Bryant. We were supposed to unite against her hateful campaign. And now there's this awful disease that is knocking us over like dominoes, and this is supposed to be bringing us together. And we're lighting candles and singing songs and planning for floats and balloons and celebration.
July 20, 1987
Dear Donald: Last night I got home around 2:00 a.m. after spending several hours in a small, smoke-filled room with three other people, hammering out a reasonably coherent fact sheet for this week's action. Tonight, of course, there is the 6:30 pre-meeting meeting followed by the 7:30 meeting and then, tomorrow, the action begins.
I would try to explain tomorrow's action but I'm still a bit fuzzy on the fine points (for instance, like what in Christ's name are we doing?).
Our gripe at the moment is with the National Institutes of Health, which has promised much and delivered little. The NIH, unfortunately, has no office in New York City, and we're not ready right now to take several buses down to Bethesda, Maryland. So we decided in our own vague way to have some sort of a demonstration at one of the three AIDS Treatment Evaluation Units (ATEUs) here in New York. (ATEUs are designated by the NIH. There were 19 altogether in the U.S.) While I was gone, the group decided rather rashly to have a demonstration at Memorial Sloan-Kettering Hospital on July 21 (it's the arbitrary choice of that around-the-corner date that is giving me, and several others, the most trouble).
So, in the short space of time between the June 30 demonstration at the federal buildings and what will now be a four-day continuous picket beginning tomorrow afternoon, people have been driving themselves around the bend and back again to make this thing work. The Issues Committee, for example, has been rapidly digesting reams of paper full of charts and statistics about the obligations and realities of the 19 ATEUs in order to get this damned fact sheet ready in time.
There have been a lot of problems and a lot of phone calls, as usual. This time, however, I've stayed clear of most of them. Whereas in the past, all of our problems were concrete, logical considerations, these all tend to be tactical. (Do we negotiate with the police or don't we? That sort of thing.)
Anyway, tomorrow the fun begins. I am definitely not putting in any great long stretches of time on the picket line. I just don't feel thoroughly committed to this one.
And, of course, Larry Kramer has been giving out peculiar press leaks that have little bearing on reality. You know, sometimes I really love that man, and sometimes I want to bury him in cement. It's hard to understand how he could write such a tender farewell letter to our membership and then become more closely involved than ever before. Tonight we're distributing an information packet to our new members, and it's been suggested that I enclose a copy of Larry's farewell letter in each one of them.
But we do have new members. Lots and lots of them. The massive outreach effort we did on Gay Pride Day has apparently paid off. The meetings have been packed with young, eager people. I don't know how long that can keep up, but for the time being it means we have willing volunteers to share the workload. We have also acquired some slick Madison Avenue types who have all sorts of hare-brained ideas.
What all of this means is that ACT UP is the darling organization of the moment. We have achieved some level of credibility and respect both within the community and among the federal agencies. I just don't know what's next. I honestly cannot see the big picture.
Dear Donald: Things here remain frantic. My worst nightmare was realized the other night when I came home from a four-hour Coordinating Committee meeting to discover my entire message tape was filled.
Next week we're back in Washington for the March on Washington and a countrywide town meeting on AIDS activism. I've finally reached the point where I'm reserving rooms at Hilton hotels. Imagine, just four months ago I was protesting outside that same hotel. The question remains whether I have to be bus monitor for this junket.
Yesterday we had a demonstration in Bedford-Stuyvesant, where Pat Robinson announced his candidacy for the Republic presidential nomination. Sunday we go to the Marriot Marquis Hotel, where the American Society on Microbiology is conducting a symposium on AIDS.
Larry says we are on the cutting edge. I told him that sounds like if we make one false step, we're history.
April 3, 1988
Dear Donald: ACT UP has now seen its first anniversary. On March 24, we returned to Wall Street, the site of our first demonstration. This time, 600 people attended. One hundred eleven women and men were arrested in five waves of civil disobedience.
The movement is indeed growing. My God. It's getting so big! At the end of the month there will be a week-long series of actions culminating in marches on all 50 state capitals. I was informed today that Jesse Jackson has just endorsed the event.
It's inconceivable that this much has happened in one year. I've been so close to it, buried in the paperwork, not always able to see this thing growing. Since October, our weekly meetings have consistently been attended by at least 300 people. From what I've been told, that in itself is a phenomenon in grassroots politics.
A week ago Sunday we celebrated our anniversary at a club in the meat-packing district. We held-of course-a talent show. The night before, I was suddenly in the position of codirector as well as star bill. Like everything else in ACT UP, it was all thrown together at the last minute and executed with great panache. We had a little of everything on the slate: Rollerena's comeback performance, an a capella doo-wop group, a couple of comedians, a folk singer, a rapper, a cabaret singer. I close the show with my rendition of "Rose's Turn" from Gypsy and a tribute to my friend Steven. In our biggest gamble, I brought everyone back onstage to sing "Getting to Know You." Donald, can I tell you, we managed to get 300 AIDS activists (admittedly drunk) to put their arms around each other and sing a Rodgers and Hammerstein number.
That all done, we are now preparing for this week's actions. Financially, ACT UP is flat broke, which makes all our Coordinating Committee meetings these days resemble a larger version of my own personal bookkeeping system, "Kamikaze Banking." Somehow we'll manage. After everything that's happened, I now believe in the tenacious spirit of this organization.
"I guess [hotel security] assumed because I was black I wasn't a part of ACT UP. So Ellen Bay and I, by dint of sheer persistence, were able to figure a pathway-up one flight and then down an escalator-until we found our way into the kitchen. It was like The Guns of Navarrone; they were pointing in the wrong direction. They didn't expect us to come in through the kitchen. We got three or four people in that way. Ellen was able to shake Pataki's hand before confronting him.
--Longtime member Raan Medley on infiltrating a fundraiser for Republic Candidate George Pataki, now Governor of New York
"It took two or three hours to get arrested, so we were eating. I had a banana peel sitting next to me. So when the cop came, I resisted arrest, and the cop had to pick me up. He slipped on the banana peel, fell over and cracked his head. They wound up dropping the charges, but they me made me come to court a lot.
--One of the youngest founding members, Stephen Gendin, on his arrest for assault and battery
"When I was arrested at NIH, this real hunky cop asked me if I wanted to walk or be carried. And I said, 'Are you kidding me? I would never walk and pass up the opportunity of being held in your arms.' Which he really, really loved. And he proceeded to carry me to the van."
-Gilbert Martinez, founding member of the Latino Caucus
"We needed people any way we could get them. If some people did it because it was now cool to wear black combat boots and cut off t-shirts that say ACT UP and have a specific haircut and make-sure-you-get-a-picture-getting-arrested, then fine. I would see transformations. The problem with cool is that it's no longer cool after a while."
-Writer Michelangelo Signorile, early ACT UP Media Committee Chair
"I was never a part of hte gay community, except for one-night stands from bathhouses and bars. I was deeply closeted, and ACT UP was my first introduction. That's largely what kept me coming back. I had never done good. I had worked at J.P. Morgan, which was never confused with doing good. That was doing well."
-Early ACT UP poster boy Peter Staley, who left in late 1991 to found Treatment Action Group
"What I liked about ACT UP was that there was no defined set of politics. People listened to each other in the room. Even though there was that bitchiness when someone would yell, 'We're wasting time while people are dying,' others would just go, 'Oh, shut up.' We were trying to work out what we thought."
--Maxine Wolfe, cofounder of the Women's Committee