Lessons from the AIDS Movement: Peter Staley interview transcripts

Peter Staley: Full interview + transcript

The following is the video + transcript for the full, 70 minute interview with AIDS activist Peter Staley. You can also browse short, 2-3 minute videos.

JEN: Hello and thank you for joining us for this episode of Thrive Show. I am so, so thrilled to welcome today Peter Staley who many of you know from David France’s documentary film How to Survive a Plague. Peter has been a long time AIDS and Gay Rights activist, first as member of ACT UP New York and a founding member of TAG, the Treatment Action Group. He served on the board for the American Foundation for AIDS research for thirteen years, and then founded AIDSMeds.com, an educational website for people living with HIV.

I just wanted to thank you so much Peter for joining us today. We’ve been so inspired by David France’s film and by you in particular and by all of the activists who fought and in many cases lost their lives to AIDS. Obviously the situation AIDS activists faced then is very different in many important respects from the challenges ME advocates face, but so many of us found the film and all of that history, especially those of us who were too young to remember it, deeply resonant.

PETER: Well first Jennifer, thank you for having me on. I was really honored that you asked and thought my advice could be helpful to the important work that you do and others are doing with ME, so lets get to it.

JEN: I just wanted to start by pulling a couple of quotes that actually some patients had posted from the film that did really resonate with them. One patient wrote, “’I began looking around for treatments to save my life, and there was nothing coming out of government effort, I quickly realized.’ Sound familiar?” I think that was actually you that actually…

PETER: That’s my quote yes.

JEN: That was your quote in the film. And then another patient said, “In the absence of adequate health care, we have learned to become our own clinicians, researchers, lobbyists, drug smugglers, pharmacists.”

And I think one of the things that was really interesting for me watching the film for a second time yesterday, was even in some of the details there were some things that kind of really stuck out for, me small things, like there’s one man who’s talking about sort of being this black market for drugs and I see isoprinosine in the background, which many of us are taking but can still only get from Canada. And even Ampligen, which is one of our more promising drugs and the only one that is sort of out there even being considered, was originally developed to treat AIDS.

So I think really watching the film was also a reminder that we deserve a lot more than what we’ve been given but we’re sort of so used to experimenting on ourselves, spending insane amounts of money for doctors and drugs that are not covered by insurance and even avoiding emergency rooms because those are not safe spaces, especially for severely ill patients. And so with that kind of background I just wanted to sort of ask you a little bit more about your early activism for those who haven’t had a chance to watch this film, and I was wondering if you could tell me a little bit about what you were doing when you were first diagnosed, and why you decided to become an activist.

PETER: Well I was a bond trader at J.P. Morgan so I was on Wall Street. I came to Wall Street fresh out of college in 1983. I went to Oberlin, for all you, any of you who are Oberlin grads. And I found out in the fall of 1985 right after the Rock Hudson news had completely stunned the country and it put AIDS in the media focus for the first time in the crisis. The country had really ignored the epidemic up until then, but already thousands of gay men had died of AIDS in the US by that point. It was a really scary time; there were no treatments. There was real resistance from most politicians to do anything about it; there was certainly strong resistance from the Reagan administration and many of the religious right executives that he had throughout the administration. And we just we had this wall of national resistance to doing anything to save our lives.

So enough anger built up after enough deaths had happened that ACT UP was formed and it happened in early ’87, about a year and a half after I was diagnosed, and I was just blown away. I saw their first demonstration on television, and it was on Wall Street, it was outside the building where I worked. So I got my ass to the very next meeting and never stopped going after that. Within a year I went on disability because my immune system got to a real dangerous level and I realized the bond trading job was gonna kill me. So I became a full time AIDS activist and with hundreds of others; after ten incredibly hard years of work we had some major breakthroughs to point to.

JEN: I know that there are many ME patients who are still working and are fearful of coming out, that it may affect their jobs or their careers. I also know that you were not out as being positive when you were working as a bond trader, and I think you weren’t out as being gay either. Was it a difficult choice to make to come out?  Or did it just sort of feel like it was the time?

PETER: Well, I got it all over within a day! But no, it was difficult I was seeing a shrink and I had to make that…When I was diagnosed I had it in my head that I wanted to just live my life as if I might survive, as if I didn’t have this virus. I wouldn’t ignore it, I’d look for treatments, I’d take care of myself, but I wanted to stay on my career path and not get knocked off track. But then I was getting more and more involved with activism and getting angrier and angrier. I was a bond trader by day and an AIDS activist by night and neither…

JEN: those are very different …

PETER: Neither of the two worlds were allowed to collide and it was a juggling act that was killing me literally. I had a good shrink at the time and once my CD4s hit a very dangerous level I just felt the game was up and with a lot of help from her we made the decision that I would, and I said you know if I’m doing this I’m going all the way. I had already come out to my family and they knew I was gay and they all thought I was gonna be dead in a couple of years. But, I went into my boss’s office and I told him I need to go on disability, and I was the first bond trader ever to come out as gay. First one ever to come out as having HIV, but I was gone the next day, you know, I was out. And then a week later was ACT UP’s first anniversary action and it was the first one I felt – I had not been participating in the demonstration because I didn’t want Wall Street to see me on the news. The very following week I sat down with… and got arrested on Wall Street at the first anniversary action. And a local TV camera shoved right in my face and interviewed me while I was on the street and there I was in the local news, it said, “Peter Staley AIDS Victim.” So I came out, it was all over in a week. [laughter]

JEN: [laughter] Wow it must have been kind of like, freeing and exhilarating I guess.

PETER: Yeah very liberating. It was letting go of that, you know, “this isn’t gonna knock me off my stride” fantasy, and saying OK, If I’m gonna live I’m gonna have to devote myself to this. And that’s what happened.

JEN: So I want to sort of, invoke for a moment, that young man in his mid to late twenties, who was lying down on Wall Street and getting arrested and climbing up buildings, climbing up the walls of the FDA and the NIH and unfurling banners, and doing all of that stuff. I think people remember most of the way because it was the most visible of all of those protests, what some people call sort of the, the theater of arousing to action and brining attention on the illness. And I wanted to hear your thoughts on what were the benefits of direct action. Do you think it was the right approach for the movement in the early days and why?

PETER: It was essential.  Nobody thought we deserved to be listened to. Nobody cared about us. We had to really shake the country up. We had to shake politicians up. We had to shame them into action. And one of the quickest ways to do that is to use our so called forth arm of government, which is the press, and give them a story and a picture, give them a drama that they find compelling and that creates good and evil, this narrative of good and evil. We were the dying Americans that the country was letting die. And regardless of what Americans thought about gay men and lesbians, they don’t like having it, realizing that their own government is just letting thousands of their own citizens die. That’s something that most Americans can’t countenance. So we played to that shame, that guilt, and we gave the whole country a guilt trip.

But the street demonstrations and using the media, that’s what created that narrative and that story and changed the poll numbers on AIDS very quickly, upwards of 80% of the country was saying we should be spending more on AIDS research and both parties, a consensus in both parties happened that, they were, they were just gonna start ramping up that NIH budget. And during ACT UP’s first five years the NIH AIDS research budget tripled and went over a billion dollars a year by 1992. And now it’s over three billion a year. That consensus has remained ever since. The Republican Party, as evil as they are, you don’t hear them say, “Oh we should slash AIDS research,” and it’s because of what we did during those years. We made it politically incorrect to be anti-AIDS research.

JEN: I liked the language that you used when you were talking about, in particular, the importance of crafting a narrative and also creating an image for media. And one of the things that I noticed looking at some of that news footage was how at many of these demonstrations there were just, like really powerful images that seem to have been constructed intentionally for the media. How much organization was there behind what people brought to these demonstrations and how much of it was more self organized?

PETER: Well we had what we call affinity groups within the larger membership.  This was a way for small groups of friends and likeminded individuals within the large membership to plan for what they were gonna do for these large demonstrations like the one we did at the FDA or the one that we did at the NIH. And it kind of allowed a great deal of creativity so that there could be multiple visuals at the larger demonstrations, which might last half a day, or even a day, like the FDA did. I think all the affinity groups, it almost created a competitive thing of “Who’s gonna get the visual that ends up on the nightly news?” But there were some actions that the larger group would discuss the primary visuals.

For instance at the NIH demonstration, and you see quickly in How to Survive A Plague, you see all these multi-colored smoke grenades as we invade Building 1 of the NIH, as we march on it. And we debated that, and that visual, I take credit for it, it was from my affinity group called The Power Tools, and this was right when some newspapers around the country were just beginning to buy color printers. Prior to 1990 all newspapers were just black and white, printed in black and white. And then they all started getting color printers, but they were very expensive so they would only use them for the cover of the newspaper, or the cover of each section. Even the New York Times still does this you’ll see. You’ll see some internal pages are just black and white and they use color selectively. So all these newspapers around the country, if you gave them a picture that had lots of color in it, you had a chance of getting on the cover. So we said, have these military smoke grenades which we bought, which we got in one of those gun magazines, and they were Israeli Surplus smoke grenades, and we got one of each color, and we put them on the end of long poles and set them up and it was just a gorgeous visual. It looked very dramatic and dangerous, but it was very safe. And it was all just so we could get on the front covers of papers, and it worked.  We got on the cover of the Baltimore Sun, it worked.

JEN: So that actually brings me to my next question, which is how ACT UP was organized and why it worked. It seems again from the film, and I know we as a community sometimes struggle with, people have differing ideas on what some of the best strategies are or even what the goal should be. And I’ve heard people describe ACT UP to me as a very democratic and decentralized organization. But what did that actually mean in practice?

PETER: Well it was. In practice it meant that we had to, in order to stay very democratic, almost all the major decisions were done by majority vote, whatever member was in the room. It meant that everybody had to show up in a room once a week. So what it meant in practice is that we had a general membership every Monday night at the Gay and Lesbian Community Center in New York City and at our peak we had 900 people at a meeting and any decision that involved I think over a few thousand dollars of expenditure had to be voted on by the floor, any change of structure, any action, any demonstration, any press release, all of that was done by majority vote. We were not, thankfully we were not consensus or we would have never gotten anything done. And that’s one of the things that I think Occupy made a mistake trying to do from the beginning. But we were majority vote and very few of the votes were close. When people hit on good ideas everybody went and got excited about it and there were always very lopsided votes.

And then we had various committees handling all the grunt work and handling all the inside work and devising the policies and the proposals that would come to the floor. There were committees on every issue within HIV/AIDS. There was a fundraising committee, there was an outreach committee, there was a media committee, which was brilliant, they constantly kept us in the news, and that’s how it worked. But it really depended on everybody being in a room. I haven’t been able to see, I haven’t found a model yet for a live democratic movement replicating that online but I’m sure the technology is doable but difficult.

JEN: We’ve actually been having some discussions about how we might try to replicate some of the benefits of that face-to-face interaction. I’ve been chatting a bit with Beth from HealClick about this and it seems like something to work towards, but if you were gonna name some of the core benefits of that “everyone shows up in one place at one time every Monday,” what should we learn from that, that we might be able to translate into online organizing?

PETER: It’s a very crucial part of what made ACT UP a success I think. And that’s just the ability to be creative and brainstorm for your movement in a face-to-face setting. Conference calls and online arguments, they don’t tend to get a…you don’t feel the room change. Let me put it this way, as you’re discussing, “What should we do about this issue?” “Who should be the target?” “OK That’s the target” “What should be the demonstration? What should we do to get it in the news and make that the issue?” People will raise their hand, somebody will give an idea, you can kind of hear a kind of sigh or groan to the ideas nobody’s excited about. And then somebody raises their hand and says, “Well what about this?” and it’s like oh you can just feel the excitement in the room, of yes that’s a brilliant idea, and then somebody jumps on that and says “oh yeah and we can add this to it,” and then you have this beautiful action from this think-tank environment of creativity and feeling in a group what excites everyone. I have yet to see an app that does that. Or an online forum that gets that sense of the room and builds that excitement to support an idea or to shoot down an idea. What happens online is people start proposing ideas, you have to be very diplomatic in how somebody takes the lead on shooting it down and then there’s animosity between those people and then arguments break out, and it’s very slow and painful and…

JEN: And it seems like it must be much easier to argue face-to-face when you have a real connection or a relationship when you’re gonna go out for a drink afterwards even when you’ve been arguing.

PETER: Exactly, so there really is nothing to replace it, but it’s not to say that movements can’t be done without it. And also that movements can’t be done on a much smaller scale with just a handful of people. I did a lot of activism around crystal meth in gay men in 2004 with just four or five other guys and we changed the politics in New York City on that issue. And we did some of that just with conference calls. So it can be done. It’s not a roadblock, but there is nothing to replace it.

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.

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, it’s 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’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.

JEN: What were some of the latent resources that you all had, both within the gay community and within ACT UP in those early days that helped to make the movement a success?  And what, if anything, do you think can translate to health movements today?

PETER: Right. Well, I mean that’s the very mixed blessing of the early AIDS years in the US, it hit a community predominantly and that was gay men, mostly in the major cities. We were not a nationally, a nationally powerful movement by any means, the LGBT movement at that stage. We couldn’t get any laws passed, but we were an organized movement.

There’d been some organizing since Stonewall in 1969. The major national gay organizations, Human Rights Campaign, NGLTF, Lambda Legal, all of those had formed in the 70’s and early 80’s, so the structure was there, the community was there, the social networks were there, and when this disease hit just this one community it had that base to start with and that base was, you know, crucial, just massive, because we definitely didn’t have the country on our side.

So that was a unique asset that a lot of other, you know, Alzheimer’s just doesn’t hit one small community and heart disease doesn’t hit one small community, breast cancer largely hits women, but you know it was a very unique circumstance. But other movements, including yours, has an advantage of numbers that we never had.  You have far more that are suffering from ME than we had suffering from HIV in the 80’s. And yet we still made it the number one, the second largest research budget at the NIH within five years. So, you know, small numbers of people can really make a lot of change. And you also have friends. It’s not just those that are affected. Only, I would guess maybe a third of ACT UP’s membership were HIV positive and very few of those were out about it. And the rest were friends, and family, and lesbians, and the community.

JEN: I thought it was particularly interesting when I asked you in one of our pre-calls, about, did you all just know how to be activists? Obviously you’re coming from very different professional backgrounds, and different sorts of training and skills, and yet were able to do these fairly masterful things. You mentioned there were a lot of lesbian women early on in ACT UP who actually came with experience.

PETER: Huge amounts of experience, in the pro-choice movement, in women’s lib, we had both, and the older generation LGBT activists, both gay men and lesbians had experience with the gay rights movement in the 70’s, we had a couple Stonewall veterans that were in the room that actually participated in the Stonewall riots. So there was experience from day one, and then tons of people with no experience but from all occupations. Like I had a business, you know, I had this Wall Street background which made me very comfortable dealing with pharmaceutical companies. I was not intimidated by sitting down with the CEO of a pharmaceutical company. And, we had people from the media that worked at networks and we had people in advertising and PR that, and the arts that created the most stunning visuals any movement has ever produced. And they didn’t have prior civil disobedience experience but they were able to add all these talents to the pool and so ACT UP used that starter pack of hardcore social activist experience so that we knew how to do big demonstrations from day one, and we added all this and we created something new with all our collective talents. And every movement creates its own playbook is what I’m trying to say. You make your own playbook, you look at stuff like ACT UP, what ACT UP did, hear all my stories until the end of time, but yours is gonna be different, and your techniques are gonna be different, and ultimately the way you win it is gonna be different, especially since technologies have changed. And so trust yourself to make mistakes and trust yourself to be creative, but you won’t use the same playbook that we did.

JEN: That’s incredibly helpful. I think from that I take away the importance of taking stock of what our own latent resources are and trying to figure out how to maximize them, how to maybe do something that’s creative because of the constrained design problem that we face and may even be an inspiration to people down the line. One of the things I wanted to ask you about, there were a couple of sort of key steps that activists took in Washington and I’m sure that there were others but that sort of came up in the film and one of them was sort of expanding patient representation on various committees and the second one was this sort of lobbying of congress where I think you’d mentioned previously that you had, that there was really a concerted effort to identify specific people who had high potential to be allies. I think very often because most of us can’t be physically present in Washington we have a tendency to think about Congress, the FDA, the NIH as these monoliths and the message that I’m hearing from you is that it’s really important to try to identify who within these institutions are making decisions and who might be sympathetic to our goals.

PETER: Yes, exactly, and within the medical establishment as well. I think one of the reasons TAG was so successful is it started siding with the biostatisticians up at Harvard and Yale that were being very critical of how clinical trials, AIDS clinical trials were being done by the government so we found these PHD allies, some of the smartest in the country and adopted their, coalesced with their criticism and amplified it which made us only sound smarter. But yeah finding those allies in the government and constantly working with them is absolutely key and including on the hill, you know we found the democratic senators and congressmen that cared and when there was budget help we needed or legislation like the NIH Reauthorization Act of 1993 that TAG was very involved with, we had Senator Kennedy on our side that, he’s a, he was a powerhouse.

JEN: And how did you get Senator Kennedy on your side?

PETER: Well, he had a gay aide, they all had gay aides. Washington D.C. is filled with gay aides, so they were our, kind of our natural allies. And obviously that’s not, that’s not something that’s going to be hugely helpful to the ME movement, but you do have, you do have a community, you do have numbers that boggle my mind, I mean, just the fact that your Kickstarter campaign and your documentary blew through its goal by 400% is really impressive, that would have been very hard for ACT UP to have done and somebody in that huge circle of concerned citizens with your disease group has got to have some connections to key people on the hill. And you just have to find those, and get the meeting. And if you ask for a meeting and are denied one, then, just show up and refuse to leave.

JEN: I have another question from, from, Emily C. Actually there are sort of two related questions, one also from Laura, and Emily asks, “How does a movement retain momentum over the long-term, especially when faced with great setbacks,

disappointments, and the poor health of advocates? What is effective for keeping momentum going and ill people engaged?” And then Laura asked something related, if I can just find it, which is “How much anger is effective and necessary in this kind of activism? I get exhausted from being too angry and I think that’s a problem for many of us.”

PETER: Those are good questions. It is very hard to maintain and to keep this going year after year especially when you don’t get… Oh we have a cat joining us! When you don’t get optimistic news to keep you going and the research isn’t panning out or nobody’s caring, you know we had ten years of ups and downs and the downs were generally much worse than the ups because they were just so, so disappointing, and the deaths, the deaths just kept going up and up every year, that never changed. So people definitely dropped out and were exhausted by it and there was constant flux in the movement. The movement fractured as you saw in the film and TAG split from ACT UP, so ACT UP, that happened five years in, but the work continued. Movements change over time. AIDS activism is needed now as much as ever. And it’s a much smaller, it no longer has the active participation of the entire LGBT community, that community has moved on to marriage equality, but the AIDS activists who are left, which cross various communities now are a very lean mean group. We are, on average we are a smarter movement than we have ever been. We are more expert than we have ever been. A lot of us are in, collecting a salary on this work now with various AIDS groups and we’re doing it full time, and we have all the access in the world that we didn’t have in the beginning.

JEN: In the film there’s a sort of really moving moment where I think you and several other members of maybe one of the, I’m not sure if it’s at TAG but you’re in someone’s apartment and you’re talking about this feeling that you’re not, you know you’ve been fighting for a while and that you don’t believe that you’re going to live to see a cure that you’re going to live to see the thing that you’re all fighting for and there’s this feeling of the future that you’re fighting for is really far away. Much farther away than the five or ten years that it ended up being. And I wanted to ask you personally, did you have moments when you just were like, I can’t do this anymore, it’s just too much?

PETER: Sure, and during the split year, the last two years before we split off for TAG I felt that a lot because it had stopped becoming, the upside had disappeared. The medical news was so depressing, we didn’t seem to be making progress, and the family that I found within ACT UP was like the worst family life you could imagine, you know, it went from a loving family to this horror story where Mom and Dad are beating each other up every night and everybody’s drunk and it’s just a horrible, horrible scene. And it was, you just want to get out. And I, a lot of us worked really hard to figure out, well how can we make this mentally safe again so that we can continue this work. And that’s ultimately what lead to the split, was our desire to keep doing the work, but not be so emotionally distraught while we were doing it. To take care of ourselves, and you’re not gonna get anything accomplished if you’re miserable the entire time while you’re doing it. There’s gotta be some, some joy and some camaraderie in fighting these fights. Even if you think you’re not gonna live long enough to see the fruits of your effort, to do this type of activism for a larger health community where you know that you’re fighting for thousands of other people can bring a real sense of accomplishment just by the act, just by the trying. And so for me and many others it was, it was a choice. You could either give up, and surely die, or you could die fighting, and dying fighting sounded more alive to the rest, to most of us. It sounded like the way to go. And it, at many times it was joyous, the work we did. It was very loving and empowering and even when you weren’t winning, just the, the active fighting was very empowering.

JEN: So Cheryl Marshall asks a question that you’ve answered in various ways but it’s been sort of plus-elevened by the audience so I want to ask it again and sort of dig a little bit deeper into this. “How do you translate what HIV activists were able to do to ME, given the fact that so many of us are bedbound and homebound and don’t have many healthy people activating for us?” and Vanessa asks a similar question which is, “Often the sick with severe ME cannot get out of the house. What can we do with this illness is so,” I’m sorry, I guess, “What can we do with this illness given that it is so debilitating that we simply cannot physically get out?”

PETER: It’s a massive roadblock for you, there’s no doubt in that. And it’s gonna take I think a lot of creativity to get around that type of thing. I will say that some of the, some of the actions that ACT UP did require very, very few people. We shut down trading on the New York Stock Exchange with five people. We put a condom on Jesse Helms’s house with seven people.  So you don’t, if you can find either those living with ME or ME activists who are friends of those living with ME and design a, and you only end up finding five to ten people that are willing to risk arrest you can design an action around that depending on the creativity and the target that would not require much physical exertion and I think that’s the type of mind, you know, that’s the type of creativity in the playbook that you guys are gonna have to figure out. How do we do things if we only can get a few people to get to this location.

JEN: And I think one of the reasons why the, that Kickstarter campaign was so successful, there were a lot of people who donated who have ME, but I think an even greater number people who were friends and family of people who are ill where either patients were directly like recruiting their whole families to give, you know, they were donating birthdays and Christmases and things like that. I also think that there’s a way in which the people who love us, they want to help and be involved, but they need to be asked, and there has to be like a concrete thing that they can do because they can’t cure us or make us better and oftentimes they live far away but you know for people who have relatives in Washington, you just start testing the waters and see maybe what they might be able to do, even if it’s just as simple as attending hearings in person if you can’t go.

PETER: Yeah, exactly. And you’re all gonna have to explore things that you can do online en masse. I, given my ACT UP history, I’m less versed in that. I’m very versed in social media, but I remain dubious as to its ultimate potential to create change. But there have been some instances where that’s happened, you know the video that went viral on finding who was that Kono? Or…

JEN: Kony. Kony 2012

PETER: Kony 2012, that had a moment that quickly withered, but it was a big moment and that was all online and I think your documentary could be hugely important, so looking at today’s media and how to leverage that is something you should definitely think a lot about. It’s hard because it’s a very crowded area now and everybody’s doing stuff on social media and through the social media. But if you do it, you know there are certainly instances every few months of somebody hitting the nail just right and becoming the talk of the country. So bring your creativity to that as well.

JEN: So I just have two more questions, one is from Julie who asks, “A big difference between ME and AIDS in the early days was that AIDS was seen as 100% fatal whereas ME only occasionally kills people outright. You commented that Americans couldn’t countenance letting people die. Any ideas on how to deal with that?”

PETER: Wow. Yeah I mean, pointing out how extensive, you have numbers that are very still, you don’t have the deaths but you have numbers that are very frightening as far as the number of people who are affected. And you have the cost to society of that many people being ill for the rest of their lives and far less productive than the non-ill and those, those you know, use what you’ve got, and I think there it’s pretty stunning, upsetting statistics, use the statistics you have. Our numbers, our statistics were rates of death. Yours are how many are affected. And yours are also the, you have a frustrating story of scientific indifference and a medical mystery.  By 1983/84 they did discover the HIV virus and so we knew what caused AIDS early on but you have a much harder road ahead in that sense of figuring out the cause or causes, of pushing for a massive basic research effort to figure that out, and those are compelling stories I think, and use that.

JEN: To put Julie’s question another way, there’s sort of, I mean, and this is kind of a simile I’ve used before but there’s, there’s a way in which the AIDS pandemic was like a tsunami and this is a little more like global warming.

PETER: Yes.

JEN: And we know how to respond to these like these, sort of, these big crises but we have harder, it’s harder to know how to respond to these more slower moving things.  Because if I don’t get treatment I will probably still be alive next year, I will probably still be alive in ten years. But I’m probably still gonna be in my bed, not leaving my house more than a couple times a year, not having any friends to socialize with, not being able to eat dinner at the table, not being able to read or think or have a career, or children or, all those things that make life life are taken away from you to different degrees. And so it’s a harder story to tell but I just wonder if you have any thoughts or ideas on how to try to make it feel more immediate and dramatic.

PETER: Yeah, you try, and your documentary is one way of doing that. You try to get media stories, but in this sense there’s kind of a similarity now between HIV/AIDS and your movement. Certainly the country thinks HIV/AIDS is a, was a 1980’s problem.

JEN: Like we fixed that, it’s over.

PETER: Yeah the press, we can’t get press stories anymore, very very few. And the death rate plummeted, but we have the same rate of infections as we did in 1992. The country is completely failing on prevention. Entire new generations of gay men are becoming infected because nobody’s listening and nobody cares. So, hold on one second. So, you have to, you have to just sometimes accept that reality. I think AIDS activists are kind of just living with that new reality and realizing that they’ve just gotta do a far more efficient inside game finding their allies in the medical community. We’re now trying to find allies in the city health departments and at the CDC to finally get this prevention problem fixed and to lower the 50,000 infections every year.  And it’s not gonna be big and, I think we’ve given up on the big and splashy and we’ve given up on using the mainstream media. And we’re doing a purely, a strong, a really strong inside game because there are people in the New York City Health Department, New York State Health Department, San Francisco, all the major cities that would love to lower their HIV, that believe in this too.  So we have allies in public health and we’re trying to use that now. But yeah, it’s hard, and I’m fascinated about things like fighting global warming. They’re having the exact same issue and it’s incredibly depressing. At some point you gotta wonder, you know, when do you resort to really strong civil…you know, tearing things down, you know, real anger. But, it’s horrible when people ignore you.

JEN: So Eddie asks a question. I’m gonna sort of take a second on it and expand it a bit. He asks, I think he’s in The Netherlands, maybe Belgium, I’m sorry if I’m getting that wrong. He asks, “Should we consolidate international forces, so we speak the same words or is this US only?” And I think what I would say is that oftentimes I’m very focused on what’s happening in the US because that’s sort of the stage in which I’m acting, yet the film is an international film and we’re doing a lot of work in Europe. With ACT UP you had, it wasn’t like one big organization, you had ACT UP New York, Philadelphia, and there were also some issues where

that were sort of local issues or municipal issues and issues that were sort of national issues and also I think issues that were more international, and I just sort of wanted to get your perspective on, we kind of live on the internet, which has no geographic borders, yet we’re all sort of acting the problems we face are local in the sense that we have so many different situations with our public health authorities depending on what state or city we live in or country we live in, and I wonder how much was ACT UP a sort of New York movement and how did you grow to bring in more people as you were doing things on an international stage or on a national stage?

PETER: Well ACT UP New York was the first group that was formed and they kind of, because they were the first they kind of grabbed the national work and they grabbed the D.C. portfolio as it were, and many of the other chapters were joined with ACT UP New York in the big national actions, but the bulk of their portfolio was local, either city or state issues. And it was only later that the, shamefully, that the American activists started really looking at what was happening internationally. And there was a group in New York Health Gap and ACT UP Philadelphia of all chapters, and this was after the movement had really shrunk in size, that they decided to really focus internationally and try to make that a priority in one of the presidential campaigns, when Al Gore won, ran, and try to get him to adopt it on his platform, and they succeeded in doing that by heckling his campaign rallies, and that started to put international AIDS on the national agenda.  And so it didn’t, it kind of just happened organically, it happened from chapters that cared about it, that looked at the big picture. Nowadays, because, as you said, the internet has no borders, there is much more interconnectedness than we had back then, and when there are chapters of any type of organization, they know what the other chapters are up to they see what they’re posting. And there are a lot more coordinating groups between these movements. In the US now, AIDS activists have great connections with international AIDS activists around the world. We all, it is very much all on the same team. And the work is global.  So I definitely advise having one eye on the global movement at all times and not, not just narrowly focusing in the US. And the bulk of the work is, let’s face it, for you is gonna be here. This is where you can get the most research dollars, so it should be here, but work this internationally as well. You have the ability now to be a larger movement. Use it.

JEN: Thank you so much for our time today, your time today, Peter. Are there any sort of closing thoughts that you want to leave us with?

PETER: Well I just, I’m overwhelmed by the challenges you all face and the activists that I’ve listened to with ME, their determination and, against what seems like a really hard fight and I just want to tell you I’ve been there. It felt like a completely losing battle to many of us for many years in HIV/AIDS.  And there are some that feel that way still on the prevention side. But it’s a great way, I think it’s a great way to live, to fight for these, to fight for yourself, to fight for your friends, to fight for a community of individuals who are sharing your experience and to fight for dignity

and a better life, and there will be a tipping point. There will be victories. And they will be joyous. So keep at it, and I can’t wait to see what you guys are gonna do in the future.

JEN: Thank you so much for your time today Peter and thank you for everyone who joined us. I’ve had some messages about trying to make the show more accessible to people who are severely ill. We don’t have a budget for the show yet but I am gonna try to work on transcribing in particular this show and the show on Monday for folks who are sound sensitive but are able to read. Thank you again for joining us and I will be in touch very soon. Take care.

PETER: Good luck.