FALL 1990
I am a writer. Most of the last three years of my life have been devoted not to art work but to AIDS work. Most of the previous decade I wrote fiction. Before that I wrote for theater. Before I wrote for theater I acted. Most of the AIDS work I do involves writing and speaking; I draw on the skills I developed when I did art work.
In November 1987 I joined New York City’s only (and the nation’s first) AIDS activist organization, ACT UP. Every Monday evening, 500 of the most impassioned and informed people I’ve ever encountered meet to plan strategy and swap information. Thousands more aid us in other ways. I do most of my work with the Treatment and Data committee. Forty of us track the progress of investigational AIDS drugs through the research and approval processes and advise ACT UP’s general membership on actions to take to advance our treatment goals.
In the last 2 years alone we’ve played a part in the institution of a federal registry of AIDS-related clinical trials, in making several AIDS drugs generally available, and in codifying a government policy for making potentially effective AIDS drugs available to people who have no treatment alternatives. The Treatments Agenda that we released at the 1989 International AIDS Conference, calling for new ways to prove that drugs are safe and effective, has been more or less embraced by a group of statisticians from inside and outside the government.
And we use our voices more basically in ACT UP’s frequent street demonstration. Non-violent protest has an honored history in this country. ACT UP is part of that tradition. Gay people growing up in this society are asked to internalize a system of repression and shame that would render them invisible. Those of us in ACT UP who are gay, and our colleagues who are not gay, are acutely aware that this invisibility and its companion, silence, have conspired in the deaths of many of our friends and lovers. Those of us in the AIDS activist movement who go into the streets and commit acts of civil disobedience are there in part to register a presence that will not so easily go away, knowing that our bodies and our voices are ultimately our only weapons against those who’d render us invisible. In the course of my activist work, I’ve been arrested four times, convicted one (pending appeal), and sad to say, I see no end in sight.
AIDS activism began in March 1987 because it became necessary. Early in the AIDS crisis, when local and federal governments were of little or no relief, my community responded by designing and funding all the initial AIDS service and education programs. By and large, my community still staffs and funds these programs. But by 1987 it was clear to many of us in the community that the AIDS crisis would never end unless community members began to deal with it in its starkest political dimension: the AIDS crisis had been allowed to happen because it was perceived to exclusively affect traditionally despised and marginalized minorities; gay men, intravenous drug users, and more and more, people of color of all ages and persuasions. After we’d articulated that gross political reality, some of us began to look at a narrower one: if left to the medical establishment as constituted, therapies for AIDS and its related infections and cancers wouldn’t reach the market until most of the people then infected with disease were dead or irreversibly debilitated.
I came slowly to AIDS activism. I had never traveled in gay circles, but in artistic and literary circles. Most of my time was reserved for my work, a solitary process. But I am also a long-term resident of the section of Manhattan known as Alphabet City; by the early eighties, more heroin was being cut in my neighborhood than anywhere in the world. And I am a gay man. So that, in the last decade I have seen my neighborhood and my profession devastated by AIDS and my kind decimated. in 1987, from my perch on Avenue A, the frontier of a devastated neighborhood, wholly contained within our country’s richest congressional district, you didn’t have to be particularly perspicacious to realize something stunk. And from where I sit today, although there have been some changes in the way we do things, I believe we still have to measure our success in AIDS research by the number of new effective therapies we deliver to those who need them. By that measure, I believe that, despite the progress activists have made, particularly in the area of drug research and approval, things still stink.
The government will say that drugs have never been developed so quickly as with AIDS; I will tell you that in some neighborhoods of this country people have never died so often so young of diseases so ugly as cryptosporidiosis, in which people can actually defecate themselves to death, or of MAI, in which the daily cycle of spiking fever, drenching sweats and wracking chills can literally drive a person to distraction [sic], or of a peripheral neuropathy which can spread and spread until bit by bit it shuts the body down. Give us this day our daily death and forgive me if I sometimes sound bitter. But I have a face in my mind for every AIDS-related condition I can describe to you, and sometimes several faces, everyone the face of a friend either living or dead. When the CDC can estimate that one in four young men in NYC hospitals is HIV-infected, and when the process by which we test and approve therapies is so suffocatingly slow, I can see little quick relief from the cycle of sickness and death that for a decade now has drained my community and rendered our culture incalculable poorer.
But what does this have to do with you readers who are, for the most part I guess, performing artists. Most of my friends with AIDS have been artists. At the time of their AIDS diagnoses, most had no health insurance. Several have had to wait until they are eligible for Medicaid. In the interim, they deteriorate.
The same social forces that have conspired to price us out of our performing spaces and would censor our expression are those forces that have prevented people with AIDS from receiving top-notch health care. I believe that the struggle of people with AIDS and the struggle of progressive artists is the same. I believe that the forces shaping the status quo, being historical, can be changed and that we as an articulate community should be initiating that change. I don’t have to tell you how hard AIDS has hit the downtown art scene. I’m not asking that you go and create only overtly political art (whatever that is). I will ask that you keep people with AIDS in mind and that, as members of this society, you join us activists in holding our leaders accountable for the devastation of whole cities and the decimation of whole communities. The federal government is supposed to provide for the common defense. In the current health crisis, my neighborhood and many like it have been left utterly defenseless. A government that through its neglect permits the slow bleed of a large minority of its citizens has ignored its charge and forfeits its right to govern. Virtually all the rest of the industrialized world has secured the right to basic care. It’s up to us to do what we can to help America catch up – phase one of a long overdue domestic perestroika.
