Fred Neuhouser

Q: If you want to get started, how did you first get involved with GHAP?

Neuhouser: There are going to be some problems here because this was a really long time ago. Let’s see.

Q: It was probably 1985 when it first started.

Neuhouser: So for me it was probably more like 1986, I wasn’t part of the original group. But I came in shortly after that, I would guess around 1986. So that’s twenty six years ago. I really have no idea how I got involved, I don’t remember. [laughs] I’m sorry.

Q: No worries, no worries, it is again twenty six years ago. [laughs]

Neuhouser: I can’t remember.

Q: Well I guess what do you remember of when [GHAP] first started and when you started working on it.

Neuhouser: I can’ remember a time in my life when I didn’t know Laura Pinsky, but I didn’t know Laura before this so I didn’t come to the group through her. Well obviously, when I started the group was quite small and still feeling its way around and trying to figure out what it was going to do. And as I recall, we had three, I can think of three different things we did, maybe you already know this, but one thing we did which I think people forget, was that we went around to freshman dorms and did safer sex talks with freshman dorms including bananas and condoms and demonstrations of how to put a condom on and stuff. Then we also—that was also completely not gay oriented, just directed at everyone. Then we had of course, I guess the center of what we did for me back then was the confidential HIV testing. That was for me the center of what we did and the most rewarding and the most fun. So what the advocates did at that time was, I hope I’m remembering this correctly, we each worked several hours a week, and we would get people coming in, mostly gay men (but not exclusively gay men) who were kind of concerned about their HIV status and wanted to get tested confidentially. I think we were one of the first places in the city to do confidential testing but Laura knows more about that than I do. Then we would have an hourlong session with each person which had two functions. One was to educate people on how the HIV virus gets transmitted, and the other longer part of the session was going through people’s sexual histories with them to think about what kind of chances they had, what the likelihood, as far as you could figure that out, of them testing positive for the virus was. So we also had to educate them on what the test results actually meant because at that time, it was pretty complicated, there were two different tests that were done. One had false positives and one had false negatives and if you used the two tests together you could get a reasonably good result. We had to explain all of that to them. And then, at first the hardest part was getting from them their sexual histories. It wasn’t always hard, but it took for a lot of people a little bit of getting them to feel comfortable about the topic, basically opening up about this topic to a total stranger.

Q: Yes, definitely.

Neuhouser: I said three things but what was the third? Well there was probably more than three. We also did some AIDS, some campus wide AIDS education work. I remember us handing out condoms on the steps with information about HIV. Oh, the other thing I was going to say was back then when people were getting tested at the beginning, the thought was if you test positive you will die at some point. Not necessarily right away obviously but it really was, I guess it felt like a death sentence. One thing about the program back then that I felt was a little bit frustrating but of course I understand why it had to be this way was we, the advocates themselves, rarely had contact with people apart from that initial long session I just described. After that, Laura would convey the results by telephone to people who were negative, and Laura herself would have to call in people individually in person who tested positive, for obvious reasons that were psychologically difficult and they had to start thinking about what they were going to do. And if I remember back, part of the big debate was whether people should get tested or not. A lot of people thought people should not get tested because they were liable to be discriminated [against] by insurance companies because there was, in a sense, nothing they could do at the time, nothing that was really known to be much help anyway. Obviously, those people thought that safe sex should be just, well I guess maybe both sides are responsible. Safe sex of course had to be regular and strict and so on, if people didn’t know their HIV status. And I think over the course of the years, that changed a lot as certain kinds of cures and—not cures, but certain kinds of treatments became available, and there was some point at which things became available, I guess at that point it was we thought had some value. And then the discussion started to change, and more and more people thought it was a good idea for people who had some degree of risk to get tested. Another thing we did, something that I did, I was in charge of this really small program, we did a really thorough review of the Columbia insurance plan for students. And tried to figure out what, under the terms of that insurance plan, someone who was diagnosed with HIV would end up, what kind of benefits they would have, and of course it turned out (at the time, I don’t know if it’s still this way) that the student insurance was not very good at all. So we wrote up some kind of pamphlet that probably, is probably of more interest to more than just people who were worried about HIV, was also of interest more generally to students about exactly what the Columbia student health insurance gives the students, what happens if—what kind of benefits and what sorts of things you’re not going to be able to get if you have some kind of serious illness while you’re a student. And I think that put a little bit of pressure on the Health Service to improve the student insurance plan.

Q: Wow, I had no idea. So what could students expect from being diagnosed with any terminal, or any serious illness, although particularly HIV?

Neuhouser: I just don’t remember, it was twenty some years ago. I just don’t remember. Basically, there were large deductibles with each kind of serious injury, but more importantly very small caps so that somebody who was HIV positive, given the nature of treatment at the time anyway, was going to very very quickly run out, go over the cap, and so be responsible for paying everything themselves. And then there was also a big problem of course with the prescription drug thing, the drugs that were being prescribed for AIDS at the time were very expensive and the plan either didn’t cover them or covered them so little most of the burden was going to be placed on students. So really students who didn’t happen to have good coverage from their parents were really living in, it was very risky. Because if something happened to them, they wouldn’t have much insurance to cover them. What was your original question? [laughs]

Q: [laughs] I’ve already forgotten it. What kind of clients did you see, what could you say about them?

Neuhouser: The clients ranged from people who were zero risk, and they tended to be straight people. Zero risk is probably exaggerating, but really low risk, shouldn’t really be worried about it. And those people were often, you know the self-selection because you know, anyone who is coming into the service is probably pretty, what’s the word, overly worried about their status. But among the gay men, and that was by far the largest percentage of the clients, the risk ranged from some risk to pretty serious risk. And I guess, I think one thing that was surprising to me, but it shouldn’t be surprising from what the literature said at the time, was that even the people who had high risk, actually a fairly small number of them tested positive. We never, the advocates themselves never, found out which people did test positive, but given the numbers of people who did test positive, and I believe at that time there weren’t a lot of them. Just given the numbers, you could tell a lot of the people you were seeing had some really significant risk were testing negative, which was good.

One experience I had, I can’t remember if this was—no, this was when I was in GHAP. I got tested myself and the test came back indeterminate.

Q: Oh god.

Neuhouser: This was a category that was possible at the time, I guess, but not very usual. And my risk level was reasonably low, but not so low that I could be confident. So I remember Laura, because at that time I think Laura and I were friends already, I remember Laura took blood samples of me, or had them taken she didn’t take them herself, she sent them to the CDC. Because the CDC was able to do not just antibody tests, but actual antigen tests. So they were able to, they were testing not just the specific antibodies, but they could actually detect the virus in the blood. So I felt really thankful to Laura that she did that, that the result came back negative. But I continued to test indeterminate for a number of years and even though I had this test done by the CDC, it was of course a little bit disturbing that you keep getting indeterminate results. And then at some point, I have no idea why, I just started getting negative results all the time. There was apparently something in my blood that looked very much like the antibodies for HIV but were not.

Q: Wow, that must have been terrifying, I can’t imagine.

Neuhouser: It’s funny, it was, I guess. It took about a week or so to get the results back, maybe two weeks.

Q: I guess speaking of that, how did people react to the clients you were seeing, how were people—were they worried, how did they react to things?

Neuhouser: You mean after we had that one hour session where we—

Q: Yes, within the one hour session.

Neuhouser: I think there were so many different reactions, you know, some people were really scared. Some people as I said were overly scared, the chances of them being positive were extremely small, and they were extremely worried. And then among the gay men, I would say the mood was for the most part somber. But not, I don’t think people felt, for the most part, after that first visit anyway, helpless and I don’t think most were exactly terrified. I think you know, as I said, as somber mood. It’s clear that some people, it was clear that some people were, let’s see, overly worried about certain experiences they had, sexual experiences, which when they told you, objectively speaking the risk wasn’t very high for them. And you know, they often had very phobic, not often, people had kind of a phobic reaction, so reactions like they’re never going to have sex again. And I guess those patients were the ones that were a little bit the most worrying, because you knew that’s not an attitude they can actually maintain, so that they’re probably the kind of people who kind of go back and forth between being overly worried and overly cautious and slipping into behavior that is maybe a little bit riskier than they should be doing and then getting really worried again and having to come in again and having to take another test.

Another thing I guess that we probably talked about back then that probably is still really important today is we tried to get people to talk about their alcohol and drug use, especially as it was connected to HIV, to sex I mean. Because obviously people who were drunk or high are usually less, their inhibitions go down and they don’t do, they don’t keep their own safe sex policy, so that was another aspect of the conversation as well. Back in those days, Laura was a real pioneer in the city and probably the country for this kind of program so it was a little bit like Wild West days, in the sense like my description of what Laura did for me, the sample of blood that she sort of sent to the CDC in possibly illegal circumstances, there was a lot of still trying to figure things out and working in grey areas and stuff like that.

Q: Plus the research they were doing for the Essential AIDS Fact Book too.

Neuhouser: Yes.

Q: Were you around for that six month period when they were really researching it?

Neuhouser: I believe the answer is yes. We used to, in our meetings, our GHAP meetings, this was really towards the beginning. And we would read, this was part of Paul’s and Laura’s research, we would read medical journal articles and different people would volunteer to come in and summarize the results of the article in a way that people in general could understand and we just tried to figure out I guess our own position with respect to the medical literature. And that was kind of fun. It was really challenging, because we weren’t doctors but it was sort of fun to be able to take these medical articles and try to make sense. There was this discussion of them in which people would try to really get straight on what the claims were in the paper and whether they made sense and what kind of implications they would have for thinking about safe sex policy and treatment policy. You guys probably don’t do that think anymore?

Q: We have supervisions, we have supervisions where we talk about clients we saw and how we could, how we talked to them and how we could have done better but the organization is large enough now that we have three separate ones because there are so many people who do it.

Neuhouser: Oh wow. That’s unimaginable. When I was in the group, maybe there were twelve people.

Q: We are much larger than that. It’s just quite different.

Neuhouser: Most of them were gay men. Some of them I still know. Towards the end, there started to be a few women in the group also which was good. But no, we had regular meetings, I don’t remember if they were once a week or how often they were, but that was actually a big part of being in the organization. Because it was like, it had this social dimension as well, it was like a club.

Q: I found some of the meeting minutes from then, and the things like it would rotate whose turn it was to run the meeting and stuff like that.

Neuhouser: That’s probably true, I don’t remember that, that sounds right.

Q: The thing that’s so different now is that we, we’re part of Health Services, and located with them and funded by them and overseen by them, whereas it just seems like much more of a, not anarchic, but it was a student group, that’s how it was founded, and I think it’s amazing how much it’s been embraced by Columbia Health.

Neuhouser: Yeah yeah. Well, it’s a good thing, it’s like this thing was almost given to them without them having to do that much for it, and it’s a huge, this huge medical service from their point of view. We were then, I don’t remember our status exactly, we were definitely working in the mental health, we had space in the mental health offices. But I don’t know that we had any space of our own, I think we just used other people’s space when they weren’t using it. Back then, the Health Services were over in, is it John Jay, I think?

Q: Yes, they’re still there.

Neuhouser: Oh okay. But Laura’s, that’s not where you guys are?

Q: We’re in John Jay, now we’re part of the medical services rather than the counseling/psychological one.

Neuhouser: Yes, because we always met in the Mental Health Offices, that’s true. And they’re the ones that moved over to Lerner I guess.

Q; What about other people in the group? You mentioned still being friends with a couple of them, but what were they like? I’m trying to get a sense of what the group was like at the very beginning.

Neuhouser: It was mostly graduate students. Oh, this is one thing I wanted to say too. Despite all you find in the minutes, and it looks like there’s this rotating leadership and stuff like that, it’s definitely the case that Laura and Paul were the leaders of the group. And I’m not saying that as a criticism at all, I think groups actually need leaders, but they were definitely the leaders behind the group. And there was an inner core of five or six people I would say who were very unofficially the leading forces in the group. I don’t think I was in that core. I was only in the group maybe something like a year and a half before I got my first job, so I moved away from the city and then I would just come back and do the counseling in the summers, but I did continue to do that for a while.

So most of the students were graduate students and they came from pretty much every school. There were some schools not represented, but there were a variety of schools. They weren’t all GSAS students. There, there were some undergrads in the group and they tended to play a less, a less leading role but they were there and came regularly and stuff and fully participated. What kinds of students, what kinds of people they were, I’m not sure exactly what you have in mind.

Q: I’m not really looking for something specific, but maybe specific people. Was it a very activist group? Was it very political? Was it people who went into counseling? I guess, going through these files and talking to people, the largest change seems to be that it’s not political activist organization. And I guess I was wondering if you would describe it as such back then.

Neuhouser: It definitely felt like a gay organization. And I’m not sure that everyone, that the women who were in the group, I can only think of one right now, at the time she didn’t think she was gay but I’ve run into her, I ran into her much later in life, she was actually a student of mine when I was a graduate student teaching CC while she was there and she was one of my students. She actually is a lesbian.

Q: Margaret McCarthy?

Neuhouser: Yeah. Yeah. The last time I saw her I was living in Ithaca, New York, I was teaching at Cornell, and I was on jury duty. I got called up for jury duty. And I went in for jury duty, and it turned out that Margaret had turned out to become a City Prosecutor. And it was a case of Margaret’s, so I got thrown off right away since we’ve had former contact.

I’m sure the group was activist, in a way yes, and in a way no. So compared to other groups that were around at the time in New York City it was not activist, so it wasn’t like ACT UP. And it wasn’t activist in the sense that we used things like protests, marching in the street, we weren’t really trying for political change. And that’s why, I don’t know if it’s really right to think of it as a, of course it was activist in a certain sense. And many people also worked in this other more activist, more political organizations. But this is inside a very specific program and it was really focused on getting Columbia students certain kind of social services, medical services and social services that they didn’t have. So when we would be in public it would not be demonstrations or protests, it would be like handing out these condoms and handing out the literature. I mean that’s the kind of an activism, but it is not like the kind of activism, the more political activism that I had been involved in in other circumstances. So for me this is a very different kind of group from what I’ve ever done before. And I think in a way I realized I liked this kind of group. I felt more, it didn’t, it felt more like something I enjoyed doing and could really get into doing than the times when I was involved in more political sourced activism. And those were not gay groups. They were other kinds of groups, but I kind of liked it because they were so much focused on making concrete changes for people. So it had a kind of activist flair in a sense that a lot of people involved in it were also involved in more politically active groups including ACT UP.

Q: Yeah.

Neuhouser: And …

Q: I’m sorry.

Neuhouser: No, I was just going to say the group itself, I guess it was activism in a way, but going around to give, you know, safe sex talks to freshman dorms, that’s not really like political change, or you’re trying to change people, but that, by the way, was my least favorite, by far, of everything we did. I hated that.

Q: Why? How did people react?

Neuhouser: I don’t remember why I hated it so much. I never had, you know, these were things that they were doing before at the dorms, and I believe only the freshman dorms, and I don’t think that it was something that they were required to do, but something that they were encouraged to come to, but they didn’t have to come. And it was, I don’t remember really any bad experiences. I think maybe I felt uncomfortable because I was so much older than the freshmen, and it didn’t feel peerlike in that sense. And I don’t know, I didn’t feel comfortable, in some ways, I don’t know why, but I didn’t really feel comfortable talking to kids who were a lot younger about how to use a condom. When they came to me as individuals, that was okay, I had no problems with that, but overall I didn’t like it, I think a lot of us didn’t like it.

Q: Those I think were in the early ‘90s.

Neuhouser: Mm-hmm. Yeah. My sense is, and I could be wrong about this, but my sense is that people that age now know much more about safer sex classes. Whether they follow them or not is a different issue, but I think people, I think freshmen know that. Am I wrong?

Q: They do. Yeah, when I came to school I definitely did. I don’t know, it’s a different culture entirely, because like also I’m looking at these reports when people were asking like Paul if you could get AIDS from shaking hands with someone who’s gay. Things like that are just so antiquated now and no one thinks that anymore. Well, not no one, but most people don’t think that.

Neuhouser: But back then that really was the sort of thing that, it almost had the status of something like people who think that Obama is Muslim. That is anyone with any, and maybe it’s not the right comparison, but you know, it is in a way because … anyone who would seriously read the right magazines, or the right newspapers, or whatever, would know that that’s ridiculous, and yet in the popular culture that is still very much – a lot of people believed it, and a lot of people acted that way. You know, back in that time people who were HIV positive were thrown out of school and stuff like that because there was just this fear which even at the time was unfounded, which even at the time no one should’ve had, it was not supported by any evidence, that casual contact can give you the virus. So yeah, I kind of forgot about that, but now that you mention it, that was a huge thing back then, just trying to get people to realize that casual, that you’re not in danger of contagion through casual contact. And I think, you know, people back then, just a lot of people had much less experience having real contact with gay people and got confused in their minds.

Q: Shaking hands have gone away, but we still see people that are very worried about this certain type of contact that is completely impossible for them to contract any sort of virus. Like we get like kissing sometimes, just things like that.

Neuhouser: Uh-huh. You mean contracting through kissing?

Q: People who are worried that they’ve contracted HIV from kissing someone.

Neuhouser: All right. Yeah.

Q: But that’s not common.

Neuhouser: Yeah, yeah. Yeah. I just thought of something else, yeah, this is not really so relevant, but I definitely have the feeling that, so right now I’m single, I’ve been single for about a year now. I find it really amazing how, and I spent a lot of time in Europe, but this also holds for New York City. I find it really amazing how many people that I’ve met practice safe sex sort of as a standard policy. I know, of course, that that’s not true completely, and I’m not likely to meet up with those people, but it really seems to be a pretty well established behavior from many, many, many people that just wasn’t the case back then. People had to really learn about it and really go through a change of behavior. And I don’t see that very much now.

Q: Well, there are all these editorials and The Native that are saying things like; I didn’t become gay so I can use condoms, things like that.

Neuhouser: Uh-huh? Uh-huh. Uh-huh.

Q: Yeah, I definitely think it was something that it was a completely paradigm shift within the gay community.

Neuhouser: Yeah.

Q: So I guess was there anything else that you wanted to talk about?

Neuhouser: Well, does she still do those parties? I think she maybe does, because I think she invited me this last time, we used to have end of year parties at her apartment.

Q: Those are still around.

Neuhouser: Yes, but now they must be huge.

Q: No, they’re not crazy, but they’re well attended.

Neuhouser: We used to go down to some not very good Mexican restaurant around ’96 street, and then we’d go to Laura’s house for a small party.

Q: Did you have the Christmas parties too?

Neuhouser: No, I don’t think so.

Q: We do.

Neuhouser: Where are they?

Q: Laura’s apartment on 96th.

Neuhouser: Oh? Well, it might be that we did, I’m just running the two together. I don’t remember Christmas parties.

Q: Yeah, but what I’m saying is that they’re still around.

Neuhouser: Yeah. But that’s good because otherwise if you don’t have meetings I don’t know how the group maintains the sense of itself as a group.

Q: Well, we actually have a dedicated office in health services that’s really comfy and full of couches and stuff. We have in the training process, with all the people that you’re training, and then you also do role-plays, and then you have some mentor in the group. It’s definitely, there are a couple of people that I think I’ve met once or twice, but there’s definitely a sense that it is special. I’ve met good friends through GHAP. And there is still that sense of family, although I do think it’s perhaps different.

Neuhouser: I think it was a little different back then because it was so small and all gay.

Q: What were the dynamics of that group?

Neuhouser: I might be wrong about this, I might’ve been on the outside and not knowing the full story, but my sense was it’s not like it was taboo, but my sense was that you didn’t get sexually interested in other people who were in the group. And if they were similar in a way to how family members might be.

Q: They were coworkers in a sense.

Neuhouser: Yeah. And also maybe because, I don’t know, maybe because we were united working around something death related. I don’t know. It’s not very sexy in some ways. See, I might be on the outside. I was slightly older than a lot of the people, maybe not older than Paul, but I may just not have seen Paul exactly. There was a certain weird sexual dynamic. (Chuckle) Whenever new people joined, not whenever, but certain new people who joined, it was clear that as soon as they joined there would be a kind of … slightly competitive, if they were really cute, or if they were thought to be cute, there would be a certain kind of competitive I don’t know what…talking behind the scenes about how cute the guy is and desirable.

Q: (Laugh).

Neuhouser: But my memory, and again, this might be totally wrong, just because I didn’t do it, my memory was that there wasn’t a lot of actual, you know, a lot of actual dating going on.

Q: I think it’s the same today.

Neuhouser: Yeah. Yeah.

Q: Was there anything else you wanted to talk about?

Neuhouser: I can’t think of anything.