Read My Lips: Reflections of an Accidental AIDS Activist

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.


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.

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.


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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