Read My Lips: Reflections of an Accidental AIDS Activist

Douglas Crimp had been an art critic for over a decade. But in the summer of 1987, a lethal disease was on the rise and he got swept up in another vocation.

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Douglas Crimp's detour into the world of AIDS activism was prompted by a pink triangle. Back in New York from a trip to Germany in 1987, he couldn't ignore this graphic, which was on buttons, stickers, banners, t-shirts, and posters everywhere. An art critic since the early '70s, he admired its simple but striking design and the choice to render SILENCE = DEATH in bold, white Gill Sans font against a black background. As a gay man who was suddenly embroiled in a new epidemic, he was also moved by its message.

That summer, he joined a new AIDS activist group called ACT UP. "That was a lesson for me," says Crimp, who was in the middle of his 13-year stint as an editor of the cultural journal October. "A really, really, smart, really punchy graphic image could captivate and form a community around an issue."

In the gallery below, see other powerful protest paraphernalia that Crimp and his fellow demonstrators used to gain public support for AIDS, stop the New York Stock Exchange, and seize the FDA in the late '80s. Then, in the Q&A that follows, hear poignant reflections from this art and culture academic about the rise and demise of ACT UP, and the enduring problems with HIV/AIDS.


How did you get involved in AIDS activism?

I was implicated in it from the beginning because I'm gay and I had a lot of friends who became ill. Like everyone else at that moment who was directly affected, it kind of took over my life. Initially, I thought I'd do a couple of pieces about AIDS and art in this cultural journal. And then it mushroomed from there. When I started doing research, I met someone who told me to go to ACT UP meetings. This was in the summer of 1987, and ACT UP was formed that March. I began going to meetings, and I just got swept up into the movement. Suddenly, that's what I was doing. I was teaching, I was lecturing, I was writing, and I was demonstrating. I was just completely involved.

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Maybe it seems kind of late in the game -- from '81 (when the virus was discovered) to '87-- but ACT UP was the beginning of real activism around the issue. It stood for AIDS Coalition To Unleash Power. It's a bad acronym. You know how acronyms work. They just wanted to have a catchy title.

The individual words sound very violent.

It wasn't violent. It was specifically non-violent. We were trained in civil disobedience. It's a little bit like Occupy Wall Street in that way. It's in the tradition of non-violent activism like the Civil Rights Movement. But, yes, we were unruly.

Our first demonstration was at the [New York] Stock Exchange, as a matter of fact. We were protesting the price gauging of AZT, the first drug for HIV. We shut down the exchange -- not at that demonstration but at a later one, where we got people on to the floor. We did some pretty unruly things. We occupied the Food and Drug Administration, for example, to try and get them to speed up the process of drug approvals. And we really changed things. I really do believe that working in concert with the NIH scientists can really be given a great deal of credit for the speed with which the anti-retroviral cocktail, which is saving so many people's lives right now all over the world, was developed as fast as it was. If you think about it, from 1981, the recognition that there was a new virus in the world, to 1995, when they actually developed anti-retroviral combinations that would stop that lethal virus, that's a short time for drug development. And there was a lot of pressure we brought to bear in order to make that happen. I think that's one of the great achievements of ACT UP.

It was specifically
non-violent. We were trained in civil disobedience. It's a little bit like Occupy Wall Street in that way. But, yes, we were unruly.

Why was AIDS activism so necessary back then?

Ronald Reagan became president in 1980. The disease was recognized in 1981. By 1987, he had not spoken the word AIDS. He refused. The first thing you learn in dealing with AIDS is that the medical and social issues are completely intertwined. That's why AIDS became the crisis that it became. That's why Reagan couldn't speak the word. He didn't treat it as a medical issue. He treated it as a social, religious issue. He had a phobic response to it. Koch was also the mayor of New York City. He was considered by many to be a closeted homosexual, and he did very little to combat AIDS, at least from our perspective. It was a very grim time, politically.

It was a devastating time. The New York Times obituaries were filled every day with famous people who were dying of AIDS. There was incredible fear. If you look at the television coverage in the mid-1980s -- of course, now, television coverage has reached new heights of hysteria-mongering -- the irrationality and the kind of hysterical pitch of a lot of that coverage was astonishing.

How so?

The rhetoric had this sense of us vs. them, gay vs. straight. "There are those terrible people who have AIDS, and they might actually infect us, the people who don't get AIDS." There were various scapegoated groups of people in whom HIV was first recognized. It was a very odd mixture of people that included Haitians and people who had blood transfusions.

Young people were getting visibly sick and dying around you, and the sicknesses they were getting were terrible ones that people didn't get anymore, like Kaposi's sarcoma (a kind of cancer that manifests as skin lesions). People were wasting away. Buff gay guys suddenly, over a period of months, looked like dying old men. You would see those images, and they were shown not to solicit sympathy but to solicit fear. If you were susceptible or ill or had friends who were ill, you felt incredibly scapegoated and vilified. There was a kind of incredible hysteria about the so-called lifestyle of gay men, the excessive promiscuity. I could go on and on. It was just a huge range of negative stuff, and there was very little responsible coverage of it.

In fact, there was no coverage of it at first. That was the other problem. The New York Times was not covering AIDS. It never put AIDS on the cover for the longest time. It was like we were living in the midst of this crisis that wasn't being recognized as a crisis by the powers-that-be. All of that brought out the kind of activism that I was a part of.

What was working in ACT UP like?

We were a very sophisticated activist group. This was pre-Internet media, but we were very good at getting words out, making press kits, and being very professional. Producing very, very punchy graphics was part of that professionalism. When we had a demonstration, you'd just see this stuff all over the city. And we were very good at speaking to the news media because we had people who were delegated to do these things. AIDS was affecting everyone, and the reason we could get on the stock exchange and close it down was because we had stock brokers in our group who had credentials to come in. We had people who had access, even to the media. We had people who were trained as publicists, who knew how to put together a press kit.

Between 1987 and 1990, which was the major period of ACT UP, we had 500 people at least per week coming to meetings in New York. It was a very large group. We had really effective demonstrations because we could get thousands to go to Washington, to Atlanta at the CDC. And then it spawned chapters all over the country and all over the world.

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Was there a turning point or a time you felt you were succeeding?

So long as our friends were dying, there was no such thing as a turning point. People dying was a constant. Whatever victory or optimism we could take from that was countered by the fact that we were surrounded by people who were sick and dying.

But the one that I think probably gave us a sense that we had accomplished the most was a demonstration against the FDA. It was a big march. We went to Bethesda and surrounded the FDA. There were a lot of really amazing graphic works made, and we did the most professional press kits we had ever done for that. We had existed for a year and a half, and people came in from all over the country for this huge demonstration.

It really got a lot of stories in the news. I remember specifically coverage by NPR that was basically reading the materials from our press kits. They were just totally taking our point of view. It was all about the slowness, the secretiveness, and the interest in profits rather than health of the clinical trials that were taking place for AIDS drugs at that time.

Really, the FDA looked at life-saving drugs and clinical trials differently from that time on. That changed not only what happened with AIDS treatments, but what happened with cancer and all kinds of treatments. It changed their culture to some degree because I think the scientists were on our side. They were essentially with us. And because we had people within ACT UP who knew the science of HIV as well as any FDA scientist -- they were unbelievably self-educated people -- they could talk to the scientists and the scientists would listen.

What is the state of AIDS today?

I don't think the culture has yet understood what AIDS really is. I think there are still issues. I'm not directly involved with it, so I'm no longer the expert I once was. But I know, for example, the rates of HIV infection among gay men in this society has not changed much from that time. We're still getting as many people infected every year.

When the activist movement ended, it wasn't because things got better. It was because we recognized how bad things were and we burned out.

So AIDS education is not effective still. Obviously, it has to be differently oriented now because people are under the terrible illusion that, because there are treatments, it doesn't really matter. But I can tell you that a lifetime of having to take these kinds of drugs is not a picnic. Even in the United States alone, a rich country -- but of course we know who has the wealth in this country -- we still have an enormous rate of infection and death in poor communities, especially communities of color.

We're a little more enlightened about gay sexuality, but that's partly because we have a new view of gay sexuality, which is that gay people just want to get married, settle down, have children, and be like everyone else. But there's still lots of gay men and other people out in the world who are having lots of sex with anonymous partners and transmitting HIV. That's still an issue.

When the activist movement ended, it wasn't because things got better. It was because we recognized how bad things were. We burned out when we realized what we were up against, for example, a health care system that was completely inadequate for people who were poor. When we had to start dealing with the structures of society beyond the immediate issue of AIDS, like poverty and health care, it got too big for us. A lot of the interest groups within the movement started fighting with each other about whose issue was more important. In the meantime, whatever optimism we could have gained from particular victories didn't really keep us optimistic. People were still dying around us. Around 1991, the movement kind of disintegrated. It kept going, but it lumbered along. It didn't have that kind of enthusiasm or the numbers that it did in those three, four years.

There was a very dark period there in the early '90s before most people got the cocktail in 1996. At the same time, Clinton was elected in '92, so there was a sense that we had someone who's attitude toward homosexuality at least was really different. It didn't turn out so great after all because we got Don't Ask, Don't Tell, for example. But there was this sense that maybe we could pull back from fighting the powers-that-be in the way that we had to during the Reagan and the first Bush years.

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What do you think are the remaining problems?

The vast majority of people who are HIV-infected don't know that they're infected, so they don't get treated until it's too late or very late in the game. There are still enormous hurdles with regard to prevention. There are still many, many people in this country, for example, who would vote for an abstinence-only message, the Republican message. It's extremely difficult to go against attitudes toward sexuality and to get out an enlightened, progressive message about transmission with regard to sex and IV drug use. Moralistic attitudes are an enormous detriment to preventing disease.

I think now it's global, and the central issue is money. It boils down to that. Medications are insanely expensive, since health care in this country and many other places is still for-profit. People who can't afford them die. It's that simple. As long as people who develop the medications have to make profits for their shareholders, people will die. That was the issue from the very beginning too, in a way. A for-profit health care system is lethal to people who need expensive medication.

It's the same issue of Occupy Wall Street. It's that the wealth in the entire world, not just in this county, is concentrated in the hands of very, very, very few people. And then there are 99 percent or more globally who are extremely poor, many of whom don't get health care.

I sort of feel like, it would be really great if I had thousands of copies of AIDS Demo Graphics and could put them on the hands of people in Occupy Wall Street now, so they could take lessons from that and build on them. I've noticed that a lot of the messages are really great, but they're scrawled on cardboards and a lot of the signs are scruffy. I think they tend to accord with The New York Times' desire to characterize Occupy Wall Street as a bunch of hippies who don't know what they're doing. And, of course, that's not true. Occupy, I think, is a major event in the history of the moment. I think it's going to keep moving.

Images displayed were published in Douglas Crimp's AIDS Demo Graphics.


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Hans Villarica writes for and produces The Atlantic's Health channel. His work has appeared in TIME, People Asia, and Fast Company.

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