AIDS Activist Reflects on His Life-Changing ACT UP Experience

The film "United in Anger" depicts major successes achieved by the AIDS Coalition to Unleash Power (ACT UP) in their relentless campaign to change how the government and the media addressed the AIDS epidemic in the 1980s. To learn more about ACT UP, we sat down with Dudley Saunders, a producer at KCETLink, who volunteered with the organization for six years.

How and why did you become involved in ACT UP?

It sounds like hyperbole but people were actually dying in the streets. One thing we faced then that we face today is the tendency to feel like big social issues are happening somewhere else far away from us. If you were in the suburbs you didn’t see it. It was just an idea. But I could see it [in New York]. Many of them were my friends at the time. I knew that I was certainly in danger.

One of the producers, Sarah Schulman, said that among all the participants in ACT UP, the real commonality was not that they all knew someone with AIDS, but that they were the kind of people who could not look at an injustice and do nothing. Historically if you follow their lives, they’re the ones who have a compulsion to speak up. So that was the same thing with me. I can’t do nothing. If you see somebody getting attacked on the street. Do you just let it go on and be grateful it’s not happening to you?

How did ACT UP impact your personal life?
We had people in all levels. People who couldn’t talk [to the media] and others who were great talkers. There was a place for everybody in the coalition. You were never made to feel bad because you couldn’t do something. We just found another place for you. It took a long time for me to become a treatment activist myself. I didn’t think I was smart enough, good enough. But I became who I am because of what I discovered working in ACT UP. There were possibilities for me that I didn’t know existed.

The benefits of doing any kind of activism are beyond just achieving goals you set out. The personal impact in your life is more than anyone can imagine. You will not walk out of it the same person you walked in.

By the time it came to a close I was completely exhausted. That was an awful period. Everyone was dying. I had to get myself together. I had to recover. I was horribly in debt. It made my life better and it wrecked it in a lot of other ways.

Did you realize the impact of ACT UP’s results while it was happening?
[When ART (anti-retroviral therapy) was introduced] everyone was dying. You couldn’t think more than 6 months, a year in advance because you might get sick and die. It wasn’t so much that you’d be dead but you’d be a professionally sick person where you’d feel horrible and spend all your time going to doctors. You couldn’t really plan more than that. So first people wondered, “Is this real or not?” Historically, new medication would come out and for 6 months people would feel better and then they’d start to crash. People expected to chain one medication to another and so on and then you would get sick and die. So it took awhile for this to settle in. It took a few years for people to think, “Wait a minute, I might have to start thinking about the long term for the first time.” The youngest [patients] were in their 30s when they realized they had to start thinking about having a life and even a career.

What lessons can be learned from ACT UP?
[ACT UP taught us] that we have to work incrementally, we have to work piece by piece. Give yourself tangible goals. One of the reasons ACT UP had a ridiculous amount of success was mainly because, while we were pushing for treatments for HIV itself - which ultimately led to triple combo therapy (anti-retroviral therapy) - we were also pushing for things like changes
to health insurance law. We also pushed for the opportunistic illnesses that came from infection.

So most of the things we succeeded in were these little battles that everyone’s kind of forgotten about. But because we had concrete win, win, win, that really kept wind in our sails. Most activists go for years and if they get one win in 10 years, that’s amazing. We had tons of wins. We were smart, we were tactical, we were concrete. We worked the media. Most of our actions were very specific and everyone knew what the talking point was. We made it as hard as possible for [mainstream media] to misreport.

People can get the misimpression that change is created by a rich white guy. But in fact, if you look at United in Anger, you see a broad diverse group of people. I think some didn’t even finish high school but they were able to not only learn science when they needed to learn science but they were able to learn political activism. Some of these people barely had a home but they were able to make enormous change. Ordinary people can create change. That’s the story that United in Anger gets across.

In light of recent protests, do you think ACT UP’s disruptive demonstrations are the most effective way to achieve change?
It depends what you want to disrupt. [Our] chant was always, “No more business as usual.” I never want to protest to feel good and express my rage. It was all about, “How can I make a concrete change?” And it was very easy when you have someone who is going blind if you don’t get the treatment into his body. [In Ferguson] we’re not going to cure racism in our lifetime but we can do something concrete. How do [we] do something like force body cameras onto all cops? I need something concrete to show I’m not just whacking off politically. There’s no time to say, “Well the justice system did it’s thing.” No. That’s not good enough. You have to end this with a physical change. A real change that will impact how we carry out our lives from this point moving forward. So, that is the legacy of ACT UP and how it plays out for me even now. In AIDS activism and all forms of activism.

If you look at Ferguson, it’s easy to think the situation has nothing to do with HIV. But actually that community was and is highly impacted by HIV, which has only accentuated their marginalization. Even now, communities of color are the most likely not to get tested, not to get treatment. But right now we have this opportunity due to pre-exposure prophylaxis, or PrEP, we have all the power to stop HIV. No one should be infected from this point forward but the people in Ferguson are the people least likely to get that information and get that protection. So, in a way, it’s good to watch this right now because now is the perfect time to revitalize this kind of activism and really finish the story of ACT UP, 25 years later.

Is the voice of AIDS activism as strong as it was during the days of ACT UP?
There’s a tendency to cede activism to official voices, such as the AIDS Healthcare Foundation, which is criminally negligent right now spending something like $1.2 million to campaign against people getting PrEP right now. They’re doing work with prevention money to fuel infection. The board and Michael Weinstein are basically AIDS criminals at this point.

A lot of people who would’ve been in the trenches fighting have ceded their voice to a foundation like that, so bad stuff is happening. Change never really happens from the top. With gay rights campaigns there’s a tendency to always play nice. Let’s lobby along and go to the right cocktail parties and be nice. Let’s not scare them. Let’s play with them. Except that has never worked. Playing nice never got anybody anything. No one ever got their freedom at a cocktail party with the power brokers.

Are goals to end AIDS within a decade realistic?
Yes. It’s just a matter of will. With PrEP now, no one should get infected ever again. But how do we get everyone on board? Terror of sexuality is still a problem. Some of us are living in the progressive future and some of us are living in times before the 1930s.

[For example] we have a black president and in some ways racism got worse. We have gay marriage and they will kill gay people in certain places. There’s this horrible counterbalance. Sometimes when you make things better, you expose the awfulness and the devil kicks up a ruckus. It’s like an infection. Unless you bring it to the surface, you won’t be able to cure it.

Why is it important for people to watch this film?
It’s never worth looking at the past just for nostalgia. It’s important to look at it to see the present more clearly.