Charles Koehler 0:12 I'm Charles Koehler, and this is Lambda Reports, a weekly program by and for the St. Louis lesbian and gay community. It's been nearly 10 years since AIDS was first noticed in the gay community. Now, at the beginning of a new decade, the death toll has well exceeded U.S. casualties in Vietnam, and the numbers continue to grow. Along with these countless deaths came a growing sense of anger and frustration at the government's refusal to take action to prevent additional infections and to help those who have this disease. From these seeds of rage grew an organization that shook the foundation of the medical community and revived social activism. The group was ACT UP. That's AIDS Coalition to Unleash Power. With us Today is St. Louis ACT UP, co founder and AIDS related service volunteer. Bill LaRock, good morning, Bill, and welcome to Lambda Reports. Bill LaRock 1:18 Hi, Charles. Thanks for having me. Charles Koehler 1:21 What exactly is ACT UP? I think that there is probably a lot of misperceptions about the organization, so let's clear those up right right away. Bill LaRock 1:31 It's basically an AIDS activist organization. It's a group of people that have come together to try and address the problem of AIDS and all the things that go with that in a way that no other organization is addressing. Charles Koehler 1:48 What is meant by activism? It has some sinister overtones for some people. Bill LaRock 1:54 Yeah, it certainly isn't meant in a sinister way, I think, by activism—and there's a lot of other words you could use involvement, commitment, spending time and energy—ACT UP is really a means of empowering people. It's a means of channeling anger into public awareness and constructive change and bringing pressure to bear on on people that hold the strings to some of the things that we need. Charles Koehler 2:25 And one of the things that I might add, from what I understand, is that ACT UP is is dedicated to non- violent change. Bill LaRock 2:33 Yes, it is correct. That's correct. Charles Koehler 2:35 Yes, okay, so I don't think anyone can anticipate any things as far fetched, are unreasonable as bombings or hostage taking or anything like that, from an organization such as as ACT UP that's completely goes against their philosophy and approach to to bringing about change. Why? Why St Louis and why? Now? Bill LaRock 2:58 I think really a better question is, why not St. Louis? You know, when Michael and Kathy and I were talking about starting an active chapter, one of the things that we talked about was that we've been pretty good here in St. Louis. We've been quiet. And by we, I mean the community of people that have been most affected by AIDS these last few years. Charles Koehler 3:22 We're talking not only about the gay community, but also the persons of color, IV drug users, groups that have a higher incidence of AIDS than the public at large, although that's certainly changing. So as you were saying that the St. Louis community has been pretty quiet in their approach to bringing about change. And so what was there, were there any specific incidences that occurred, or any personal experiences that you can share that brought about a reason to bring about change? Bill LaRock 4:01 Yeah, there were several things, really. One of the things was, was that I've worked in local AIDS service organizations for several years now. You know, sort of doing the day to day things to help people with AIDS be more comfortable people and their families and their friends, Charles Koehler 4:18 such as, if you can fill out. Bill LaRock 4:20 Sure, such as helping people get public entitlements, help disability, food stamps, that kind of thing, running support groups for people with AIDS, or for friends and family members of people with AIDS, those kinds of things that help people get through the momentous day to day task of living with this disease. So a lot of us have spent a lot of time and energy the last few years doing those kinds of things, Charles Koehler 4:48 Providing direct services, for instance, Bill LaRock 4:50 That's right. Charles Koehler 4:51 One on one, Bill LaRock 4:52 that's right. And one of the things that we've noticed over the last few years is that things haven't changed very much. People are still dying in too large numbers. It's been very difficult to get people services in St Louis, services that they really have a right to. It's been a continual frustration for all of us that work in this field. And I think what we what we decided, was that at this day today, sort of plotting along wasn't enough, that there needed to be something else. There needed to be another way to bring, bring this, this whole issue, to the focus of the public. And oddly enough, I mean, I think the other thing that was sort of a catalyst for us wasn't, it wasn't really age related. It was this whole incident in St. Louis County with Parents and Friends of Lesbians and gay Gays, a support group for parents of children who are gay or lesbian, and and the whole incident with the fact that the county won't let them adopt a stretch of roadway and put up a sign with their name on it, certainly that's not strictly an age related issue but, but I think it crosses over in the sense that these are parents of of children who are living and dying with AIDS, and Charles Koehler 6:04 some of them are living, Bill LaRock 6:05 some of them are, yeah, right, Charles Koehler 6:06 not all of them, by Bill LaRock 6:07 certainly not Charles Koehler 6:08 means, but, Bill LaRock 6:08 and I think Charles Koehler 6:10 it's a connection, Bill LaRock 6:11 there was a connection, and I think it just sort of sparked an anger in the three of us that, you know, it was just outrageous that In in this decade, in this century, in this city, it's not okay to put up a sign that says lesbian and gay. And we were very angry about that. And as we've been very angry over the last few years in AIDS service work, trying to get money and benefits for people. And I think the two just led us to think about the fact that it was time to start act up in St Louis. Charles Koehler 6:41 Now you'd mentioned two other individuals that helped to co found the st a St. Louis chapter of act up. Can you tell us just a little bit about them and their background? Sure. Bill LaRock 6:53 Sure. One is Michael Slavin, who's been a volunteer with PREP, the Privacy Rights Education Project here in Missouri for a couple of years, Charles Koehler 7:03 I might throw in that PREP has received continual support from a wide a wide spectrum of people across the community, and also has been supported repeatedly by the St. Louis Post Dispatch for the good work that they do. So okay, and so that that's Michael's connection and some of the work that he's done. Bill LaRock 7:27 Right. And the other is Kathy Johnson, who's also been a volunteer here in St Louis in AIDS service organizations, and has also worked for the NAMES project, the AIDS Memorial Quilt throughout the country. The three of us were friends and I shared a common frustration. Charles Koehler 7:44 I understand that both Kathy and you are also involved professionally as part of your professional life and providing health related health care related services. Is that true? Bill LaRock 7:56 Right? Kathy's a therapist here in town, and I'm a registered nurse here in town, so I also care for people with AIDS. Charles Koehler 8:05 So you know from once you're speaking on a different level … Bill LaRock 8:10 Right. Charles Koehler 8:10 from personal experience. So the three of you got together and decided to start a St. Louis chapter of, of ACT UP. Then I take it was there, was there much communication with New York from, I understand that's where the first chapter formed. Bill LaRock 8:32 That's right, there was some, you know, basically we asked them for advice, and basically they just said, do it? That every, every city takes a different approach. They gave us some hints about how to how to try and reach people, you know, to start small, not set our goals too high, that kind of thing. But they basically said, you just have to get out there and do it. And so that's what we did. And frankly, we were really pleasantly surprised by the response to it at our first meeting. Charles Koehler 9:01 I understand that the first meeting was on what date was that it was rather recently, right? And the attendance was somewhere in the neighborhood of 75 people. Bill LaRock 9:12 I actually was over 85 people. Charles Koehler 9:14 85, excuse me, nice, and we're talking I happened to be there at the meeting, and I, I personally was surprised at the wide, incredibly wide range of people that were there. By no means were they all lesbian and gay. By no means were they all persons with AIDS. There were some extremely mainstream individuals. There were some, I guess I can say, some prominent county officials there that were very supportive of some of the things that were being discussed and they could relate, indeed, to some of the real frustrations and the real injustices that were being done. That's one thing that surprised me the most. I don't know about you. Bill LaRock 10:00 It surprised me too, but I think it speaks to our common frustration at working within the system, and the fact that some things just are not going to change until public pressure is brought to bear on the people that pull the purse strings in this city, in this state. Charles Koehler 10:19 I understand that some individuals are of the mind that, well, all you have to do is go in, be reasonable, bring to the attention of the individuals that you're having problem with that this is a problem. Reason it out with them. Have meetings, and everything can be worked out. Bill LaRock 10:36 Well, I think my response to that would be that we're 10 years into this epidemic, and we are still on a daily basis, fighting battles like getting proper health care for people with AIDS, getting the Social Security Administration to qualify people with AIDS for disability when they're clearly, clearly disabled. Charles Koehler 10:59 I believe at the meeting, it was brought up that there are established, long time established federal guidelines that provide for certification of disability by way of a confirmation by the attendant of the person with AIDS' physician, and then that can just start The whole process I mean, Bill LaRock 11:20 that's right, Charles Koehler 11:21 and that I understand, is done on a regular basis in Kansas City and other cities, but is not the case in St. Louis. Could you fill us in on Bill LaRock 11:31 Yeah, there are established federal guidelines in terms of calling qualifying people as disabled so that they can get Social Security benefits from from the state and the federal government. It's been quite a problem here in St Louis, getting the St Louis Social Security office to follow those guidelines to the letter and to approve and qualify people in a timely manner. They drag their feet. They have the ability or the power to make a presumptive qualification. Charles Koehler 11:59 It's a bureaucratic term, Bill LaRock 12:02 Yeah. Charles Koehler 12:02 you're using there, but Okay, Bill LaRock 12:04 over the phone for a person with AIDS, so they can start right away to get their disability payments. They don't do that in St Louis simply because they don't want to do it. It's not a problem we found in in other parts of the country and even in Kansas City, although I'm sure that there are other places where where Social Security drags their feet. So I mean, that kind of thing just is still going on in St Louis, and it shouldn't be, and just been around for a long time now, Charles Koehler 12:32 when we hear things like social security benefits, in many cases, with persons with AIDS, that can mean the difference between whether or not they end up on the street destitute, or whether that not they have a roof over their head and lose all their possessions. And again, this is what ACT UP is in this particular case, our example is looking for is not asking for anything that is unreasonable, or any something that you're not asking for, something that is outside of established federal guidelines. That's right, that's asking for what the guidelines have been established by the establishment. Bill LaRock 13:08 That's right, we're asking the Social Security Administration to to follow their own guidelines and to follow the letter of the law. And it not only can make a difference as to whether somebody has a roof over their head, but it makes a difference as to how long they live. I think people are dying sooner because they can't get disability and they can't get the nourishment they need and take care of themselves in a proper manner. Charles Koehler 13:31 At the meeting, there were, there are several case scenarios that were examples that were given of horror stories? Could you, could you share with us some of the ones that that were mentioned, or some that you've experienced directly? Bill LaRock 13:47 Sure, I think one of the cases that stands out in my mind is we had a we had a person with AIDS who had had one of the, what they call opportunistic infections, the PCP, pneumocystis pneumonia, he'd had a bout of that. He'd been in the hospital. He'd applied for a social security disability, and he was denied it. Charles Koehler 14:09 Okay, now, PCP, for our listeners, is, is a disease which persons with AIDS commonly get, and the general public does not get it, if you contract PCP, then it is, I don't know, technically, but it's pretty much assumed that that's an indication that you have AIDS Bill LaRock 14:28 That's right, that's right. Charles Koehler 14:30 Part of, again, established federal guidelines. It's been, they've been on the books for a long time. So this person clearly had it, it the doctor certified. And then if you go on with your story, Bill LaRock 14:42 that's right, the PCP was diagnosed, that evidence was presented to the Social Security Administration. They denied his claim for benefits, saying that he hadn't had a bronchoscopy. A bronchoscopy is an invasive procedure where they actually Transcribed by https://otter.ai