JEN: I have a question here from Emily C. and she asks, I guess before, the Treatment Action Committee eventually split from ACT UP and became TAG. I guess this might apply to slightly before that period, Emily C asks, “Watching the film, it seems there was a tipping point where TAG went from feeling completely shut out to meeting with government institutions and pharmaceutical companies.
What allowed you to cross that barrier and to be heard once you did?”
PETER: Well, what allowed us to cross the barrier were the outside demonstrations, was the shaming through the media. The government – Mostly our targets were government bureaucrats. They’re kind of easy targets because unlike politicians they actually, most, half of them do care so they’re easily guilted, you know? They’re easily shamed. They’re upset that we think they’re not doing a good enough job and they emotionally respond to that. Whereas a politician might say fuck you, you know, if he’s not politically in your orbit.
So the demonstrations got us through the door. The bureaucrat would want to meet with you hoping to prevent additional demonstrations, try to, you know, come to a meeting of minds. And then what kept us in the door was the fact that when we showed up at the table we wowed them with how much we knew. With how we weren’t there just to scream at them that we had great ideas for moving the ball forward and that took this amazing self-confidence that I think everybody should have, frankly.
There’s this natural intimidation about science and things that people go to college for, for 20, 15 years, but if you specialize on one area and you just have, and you’re highly motivated, you can self-educate and become an expert in that area a lot quicker than you think. And that’s what we did. We started with immunology 101 textbooks, we reached out to experts and it was our singular focus to study that every week and to teach each other. We had committees that were like science club, you know they were geek clubs and we would study books and give each other assignments and learn everything.
And the first two years of ACT UP we had some proposals that were very uneducated and a little over the line and unrealistic, based more in anger than well thought out reality, but by year two we had really climbed that learning curve to the point where we wowed them when we walked into the room. So we just started attending all the AIDS conferences from that moment on, which eventually made some of the activists far more educated than the average doctor, who couldn’t get to every conference.
And when I have my own health questions these days, if on the rare occasions when I’ve considered switching therapies for instance, there are a couple activists I got to first before I get an actual doctor’s advice because I trust their opinions more, they know more. So it’s a remarkable thing. Never doubt how much you can learn about your own illness, and that you can be more expert than any white coat out there.
JEN: Well not having access to many experts is a really great motivator for becoming your own expert.
PETER: Yes, yes.
JEN: And so talk to me a little bit about, sort of, there are a number of things happening at once but I I’m curious, why you decided, you and others decided, to split from ACT UP and form TAG, but also, more broadly, what did you feel were the limits of direct action? I think we often feel, though there’s a debate within the community about how civil or not we should be, about how much we should be working outside of the system versus, you know, trying to maintain that access to the venues where we do have a voice, but then often find that our voices are not actually listened to, things are not really implemented, and there’s a sort of this way that we’re kind of enacting this process that just repeats over and over and over again for ten twenty, thirty, years. I’m trying to sort of understand what your thoughts are on both how to know which tactics to use when, and to best effect, and why you decided that was the time to sort of make the shift.
PETER: Right, well, you know, civil disobedience is not some sacrosanct thing. It’s not a way to live, in my book. It is for some people, for me it’s a, I’ve always used it as a tool. It’s a tool you use when all your easier tools don’t work. And all through the beginning ACT UP was always willing, we never had a policy where we’d say we’re just, we’re not gonna talk to you we’re just gonna make your life hell. We always said we want to talk to you, we might make your life hell during this process but we’ll always sit down with you and tell you what we think and listen to what you think.
So trying to get those meetings, trying to find your allies and trying to get things done the easy way is, I think, just being smart, and if you can get stuff done, if you can move the ball forward by finding allies and getting them on your side and getting a policy changed that way, then that’s the way you should go.
And during that process if you hit a roadblock and you get some attitude that your voice doesn’t matter, or you’re not gonna get any further if you can’t get past this wall of resistance, then that’s when you up the ante, and it can be any type, you know, It can be going around them to their boss and doing an inside maneuver around them with no demonstration. Or it could be a demonstration.
In your case you’ve got congress appropriating very little. So as far as the first step is to see if you can find allies in congress and work with them in trying to increase the NIH budget or get hearings on this issue in congress, and if you can’t, if everybody’s giving you the cold shoulder then consider a demonstration.
And you know not all these things have to be gigantic and you don’t have to climb on buildings. I know this is a huge issue for your movement, and your illness. There was a very famous demonstration during the Americans with Disabilities Act debate in the very early either later 80s or very early 90s I think it was, the bill that Bob Dole pushed, the ADA that we all know today. I watched that whole thing played out and there was a demonstration of for the wheelchair access where many paraplegics in the capitol dome and it was a wheelchair action and they refused to, and you can imagine the cops trying to remove people with wheelchairs that didn’t want to move, it was very dramatic footage because of the police carrying these wheelchairs out.
So there are creative ways to do this and there are times you need to do it, but it shouldn’t, it should not be considered your first option just because it’s good TV.
For more, browse other short, 2-3 minute videos or watch the full, 70 minute interview with AIDS activist Peter Staley. You can also out the HMC case study of AIDS advocacy, as well as the documentary film How to Survive a Plague.