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Kenny Post and Cheryl Wagner
Oral history interview conducted by Robert Sember
September 26, 1992
Call number: 1993.001.15
[This interview was transcribed from a videotape source in 1992. The first 340+words of interview transcript represent content that was not transferred from video to audiotape.]
SEMBER: Presuming that nobody knows you, if you could state very briefly how youare involved with the AIDS crisis. In other words, what your relationship is to it personally, and the organizations you're involved with, that you would say are a direct result of your connection with the virus.
POST: You mean since I've tested, or now?
SEMBER: Now. Right now.
POST: Right now?
POST: I'm actively participating with Act Up, with the GMHC. What else? Are wedoing this one at a time, or--? Act Up, GMHC, the Board of Health.
WAGNER: Personally I've been involved with, over the last few years, women'ssupport groups for women who are infected, affected, factions of Act Up. Also, we formed ourselves; a group of IV drug users, and we're meeting like every two weeks to inform each other of treatment data, and basically for recovering addicts.
SEMBER: And you're both HIV positive?
SEMBER: Okay. What were your lives like before AIDS? What were your hopes, yourdreams? What were your ambitions? What did you do? What was life like before you came in contact with AIDS?
POST: When I tested positive with the virus, I had about six to seven monthsclean, without any intravenous drug use at all, without any drug use at all. At that time, my life was just pretty much involved with getting it together, without using drugs. Prior to that, everything was drugs, it was all about drugs. AIDS, the virus, although I knew about it, had very little influence on anything I did. It had hardly any influence on anything I did at all. Guys talked about it, but mostly it was a lot of crap being talked about, in shooting galleries and things of that nature. It was more of a joke. The people aren't too concerned with it at all, and we knew people who were--Geez, I haven't even thought about it in a long time. We knew people who had died from the virus, who had been with us, and it was just a thing of well, there was just one less person [Audio commences here.] there the next time. That's pretty much what my life was about. I went into the detox the last time, and I had certain opportunistic infections which were pretty much indicating I was positive. So, I waited until I had about six or seven months clean, without the drugs or anything, then I tested positive.
SEMBER: And, up until that time most of your life had been spent with the IVdrug using community? Those were your friends? Like you were saying--
POST: That was everything.
SEMBER: --One group; that was it.
POST: Yes, that was everything, for about twenty-seven years. Of thetwenty-seven years prior to getting clean, for two years I was in the military service, which was little more than an interruption to my drug use. 1:00
WAGNER: What was my life like before AIDS?
SEMBER: What gave it meaning?
WAGNER: I can, emotionally, my life before I found out I was HIV positive waswhat I thought was this illusion of eternal life. I remember when I was told I was HIV positive, I felt like I was faced with my mortality. That--I don't know, you know, I traveled a lot, and the circle of friends that we traveled with (at the time we spent a lot of time in Asia and in Africa), this was in the '70s and early '80s, there just wasn't the mention of AIDS. There was a lot of drug use, and my whole life, I could say, looking back, as opposed to now, there wasn't 2:00any fear. I feel now, once I was told I was HIV positive, my whole life and my feelings center on a lot of fear, on a daily basis, because I feel--[Interview interrupted.] Should I keep talking? --that my whole perception on reality, on life, how I feel toward my child (I have a son who's fifteen and a half), that 3:00there was always a chance to have hopes and dreams. When I was an IV drug user, there weren't too many, that went into any action. But, once I got clean, I had ten months clean and then went for the HIV test, since then my whole perception of hopes and dreams are very different. It's very hard to have any dreams. That's how it's changed for me.
SEMBER: If you were to say you were a member of a group, like these groups, whatwould you think yourself as? Like, I told you about this woman this morning who would say, "Well, I'm Latino, I'm a lesbian." Could you…?
WAGNER: How would I identify myself?
WAGNER: Ooh. I would identify myself as [laughter] middle aged, White, wife,mother, an addict in recovery, an addict who used for twenty-two years. I've been clean for almost four years now. I guess I would like to identify myself as a human being in recovery, living with AIDS. That's how I would identify myself to myself. That's how I feel.
SEMBER: When did you find out that you were HIV positive?
WAGNER: Three years ago, this month. September--What would that make it? Nineteen-eighty-nine?
SEMBER: Kenny, when did you find out?
POST: Gee, I don't remember the exact day. Four years ago. I've been clean about5:00four and a half years now, right? May.
SEMBER: How did you find out?
POST: I tested at the Board of Health. I started going to certain meetings withfriends. One of my friends who was driving me around at the time, she was going to "Positive Anonymous" meetings, so I went with her. My thinking was I didn't know for sure just yet, but I'd pretty much better cover my ass, because I was pretty sure where I was going with it, and find out what I could do about it and all of that. So, that's what I did. I took care of it that way. I went to the PA meetings about once a week, and had about six months clean when they finally just formalized it by testing.
SEMBER: And once you found out you were HIV positive, did you think, "Well, this6:00is how it must have happened?" I mean, when you knew how it had happened? How you had contracted the virus?
POST: Even now there are still times when I think, "Well, let's see, back in1968 there was this time, up in the shooting gallery on the third floor, on Rivington and Clinton, and I shared a needle with so and so, and that was the one," you know? I could do that for once a month for the last twenty-seven years, you know? But, I never really could say for sure. Pretty basically speaking, I'm pretty satisfied that it was definitely the last one I did, you know? [laughter] But, actually, I've found it really doesn't make any difference. I did try to make myself crazy with that, you know, as to exactly how and when. But even knowing wouldn't make any difference anyway at this point.
SEMBER: What did it mean to you, when you found out?
POST: It just verified what I had already suspected, what different friends of7:00mine at the time--I wouldn't know how to explain that to anybody. I didn't have any--On an emotional level, I was pretty well shut down at that point in time. At any rate, fear wasn't in my vocabulary. If I was afraid, I wasn't admitting it to myself or to anybody else, and I pretty much handled it like what I thought a "real man" should do. "This is how we handle things." You know. It was a process, it was a process. Pretty much my first reaction was one of being numb, and I would talk about it in relation to things that were absolutely ridiculous, like, "Now I don't have to use a condom, and stuff like that." You 8:00know, make jokes about it. But it had no reality for me at all.
SEMBER: Did you ever think that you would get HIV? That you would become infected?
POST: I was quite sure that I was, even before I put down the drugs, in my mind,without having tested. Two years prior to the cleaning up with the narcotics, I had had a bout with tuberculosis in the hospital, at which point the doctor there wanted to test me and I refused to be tested at that time, because I was still taking drugs. So, I had an idea that this is where we were going with my medical stuff.
SEMBER: Did you ever think that you were--? Was there a point there at which youthought, "God, I might become infected doing this, shooting up? I might become infected?" 9:00
WAGNER: I remember when I came from living overseas, back to this country (whichwasn't by choice; I was arrested for importing heroin), and I was put in a federal penitentiary. I remember one of the women died of AIDS, in one of the cells, and the COs went around screaming, "There's AIDS, there's AIDS," and it was really my first encounter with even the word, what it was, and at the time I was still using. I remember that in my mind, right then and there, I totally dismissed the idea. Not that it couldn't happen to me, but if I kind of looked it that maybe if I was going to get infected, then I couldn't use anymore, because I kind of knew intellectually that if you used, or had unsafe sex, you 10:00could get this. So, if I kind of faced the whole reality, it would have meant at that time I would have had to change my whole life. When I came out of jail they put me in a halfway house on the Lower East Side, and all of the people I had met, one of the women whose apartment it was, she was dying of AIDS at the time, and we were all sharing needles. We used to go into amazing denial. Even though my girlfriend was dying of AIDS, we wouldn't even recognize that it was HIV, or AIDS, we would say, "Well, she just has a cold," or she "just has pneumonia, but it's not that kind of pneumonia." I remember many times sharing needles in lots in East New York, or cookers, and people would say to me, "Cheryl, don't share a 11:00needle with so and so, he's got AIDS." But when you're using, when you're sick, using and not being sick was more important than dealing with that issue, because if I dealt with that issue, it meant I would have to stop using. So, I knew I was at high risk from my lifestyle, but while I was actively using drugs--Like I said, it was a very sick form of denial. I didn't care. So, I knew many friends I was using with, they all had the virus.
SEMBER: Like Kenny, did you try to say "it was this time?" Did you say toyourself, "This must have been how I got it?"
WAGNER: Actually, what I did was--No, I didn't do that. I always tried to figureout how one of the two friends didn't get it that we all used with, because I 12:00never practiced safe sex, and all the men I was with, we shared needles, we didn't have safe sex, and there was one or two men and women in the same circle and I always wondered, not how I got it or which time, because it could have been any number of times. I mean, there were so many times I shared cookers, needles, didn't have safe sex, and all the people I did these things with tested positive for the virus or they've died already from AIDS. I've always wondered how the people didn't get it. That was more what--
SEMBER: How did you deal with the diagnosis when you got it? What did you do?What was the next thing you did, once you found out you were HIV positive? What did you do for yourself?
WAGNER: I remember the day. I wasn't tested with the Board of Health. Whathappened, I was ten months clean and I was getting sick. And a lot of friends of 13:00mine kept on saying, "Cheryl, it has nothing to do with HIV, it's still the drugs coming out of you." And, I knew from past experience of trying to clean up, heroin does not take ten months to detox. I was having swollen lymph nodes and diarrhea and fevers. I was cleaning houses at the time, to try and make some money, so Kenny had made an appointment for me at the doctor, so he tested me. I remember, I was cleaning my girlfriend's house and the doctor called me and he said, "Cheryl, your test came out positive." I remember being very polite and saying, "Oh, thank you very much." That was my response, like he had just gave me a gift, you know? And I hung up the phone. Which, I look back, I think I was in shock. I sat down on the couch with the vacuum cleaner on my hand, and I was 14:00kind of talking to myself, like I said, "What are you going to do with this? Either you can completely let yourself get in touch with your emotions and start screaming like a lunatic, or you can go back to your past life or use drugs, or continue vacuuming." And I continued vacuuming. That's what I did. I think, for a long time, I really didn't deal with it, and in fact, what was bothering me the most, when I was told--Not myself dealing with it, but--I had to come home and tell Kenny. That was my biggest fear, of: Now there was the two of us.
SEMBER: And what was that like? What was that day like, when she came back andtold you?
POST: Hmmn. I'm trying to recall. Well, she was very upset with it. It was kind15:00of par-for-the-course kind of thing. It wasn't basically--Geez, how do you explain this to somebody? She had always accepted the fact that I was positive. I'm not the kind of guy who goes along with things being so unconditional. So, in the back of my mind, I always figured that she strongly suspected that she was also. It doesn't negate the shock or anything from finding out. When she told me it was like, "Well, that's it. Now we know." We could take it from there. At that time, I was into the educational end of this, and I wasn't so 16:00much concerned about being HIV, I was more concerned with my own stuff; with the symptoms that were manifesting with me. At that particular time, she hadn't been open to her own symptoms yet, and really wasn't talking about them, what was going on with her physically, because at that time there really wasn't anything going on with her physically. So, when she said she was positive, well, she was just one of many who was positive. It was just part of the game. As time went on with that, it became a different story altogether, up to where it is now.
SEMBER: How has AIDS--How has your status these days affected your lives? What17:00happened, once this was the reality? How did things change for you?
WAGNER: How do I feel about it? As far as family unit, because there's myselfand Kenny and our son; I try not to feel this way, but I feel that it's ruined my life. You know, on a deeper--If I get in touch, get very honest with my feelings, that, I feel that every decision we have to make, as a family unit, revolves around HIV. I feel that it's difficult. It's very difficult to keep a family unit, a happy marriage, a happy family, and live on a daily basis with a 18:00positive attitude and hopes. So, there are times that I know if he gets sick or if I get sick, I feel like sometimes I'd like to blame everything on HIV, and sometimes I feel there's "due course" for that; I feel like it's ruined everything. Which doesn't mean I don't accept that it's there. But that's how I feel about it. I hate it. If I could have a choice, I wouldn't want to live with this anymore or wish it on another family, because it's hard.
SEMBER: What impact has there been on your body? What kinds of illnesses haveyou had that you would say are related to your status?
WAGNER: Well, from the beginning, why I went and got tested, there's chronic19:00fatigue, there's fevers, I'm going this Thursday again for sonograms (they diagnosed me with pancreatitis), and as a woman, a lot of GYN problems. This whole issue of women's issues with AIDS must be confronted, because all of these things that are physically going on with me, if you're a woman, living with HIV, having to live off the social service system of this country, there's nothing there for a woman. Nothing at all. There's one doctor in all of New York City, in the five boroughs, who accepts Medicaid and deals with women with HIV. And there's very little as far as symptoms with women with HIV. They're not even 20:00sure yet what are and what aren't related to HIV. There's been no studies done, or very few studies, done on women to even say this is from the virus, this isn't from the virus. They really have no idea. So, the last time when I went, which was two weeks ago, to the gynecologist--It's kind of experimental, you feel like a guinea pig, which is [laughter]--It doesn't make me feel good. And, what happens with myself, as far as being a wife and a mother, it's not so much that my physical disabilities are, at the present--I say life-threatening--I don't even--There's that whole realm. Once you're told you've got the HIV virus, you don't know what isn't life-threatening anymore, because all of HIV is 21:00life-threatening. But, for my self-esteem, for my person, when I get fevers, I can't, kind of, be the mother I want to be, I can't be the wife I want to be because I can't carry out everyday activities; doing the laundry, doing the shopping or whatever I feel like doing. So, that's the way my physical disabilities with this illness have affected me, more so on a day-to-day level than on, I guess, a whole, long-term outlook.
SEMBER: What has your health been like, Kenny?
POST: Great. No, I was symptomatic when I tested. My platelet count was verylow, which was bad, or, you could look at it as though it was good. I'm not kidding when I say that. That was the only thing that happened in twenty-seven 22:00years to make me even consider to stop using narcotics. So, what happened was, when my platelet count was under 45,000 (45,000 is considered critical), I had to step back and think about the way I was living at the time. Narcotics in the city of New York can be violent at different times, and my lifestyle went along with it. So, I had to realize that there were other things out here now that were going to hurt me besides what I was doing to myself. So, I signed into a rehab for the umpteenth time, and this time I was a little more serious about it. When I came out, that was basically the decision I had made, to stop using drugs at that time. Once I tested positive, then I found out that a lot of the things that were going on with my physically, which I had attributed to other 23:00things, were all virus related. The TB, the veteran's hospital here in Fort Hamilton had diagnosed me with tuberculosis, and it wasn't tuberculosis at all, it was "NAI" that had settled in my lungs. The platelet count was definitely attributed to that also. There were a shitload of other symptoms also. For myself, I don't know. I don't get too--Emotionally there's things that go on with you, like if I nick myself shaving and stuff like that, if I can't stop bleeding right away, I get a little panicky. Stuff like that. Mostly, I'm afraid of what's not known. Briefly, when I first tested, I went into this big information gathering expedition, I went to PA meetings all over the place and I took pamphlets from here, there and everywhere, and I found out after six months 24:00that the best I could possibly do was turn myself into a raving lunatic. Because I didn't understand any of this crap I was reading and the people who were giving me this information understood even less than I did, except they were just well versed in how to talk about it. So, I stopped paying any attention to it at all, and I went to the doctor. He was pretty direct with me. I wanted to know what was going on with this, and his first thought was to hesitate. I said, "No, I really want to know. Just exactly are we doing here? What's going on anyway?" He explained to me very briefly that basically what we're doing is buying time. He said, "This is what's going on. We're buying time." I said, "Well, I can live with that," or not live with it, whichever way the money's being spent, you know. [laughter] I said, "Just let me know. We're running out of money. Then I'll take it one step at a time, from there." Pretty much that's 25:00what I do; I try to take the directions from my doctor, most of the time. I'm not perfect with anything that I do, but when it comes to taking medication, I'm pretty good unless I'm on strike. I've been on strike for about two weeks now, which means I don't take any medication; at all. That's what I do. Other people do what they do. I go into complete denial. It's willful, it's knowingly, I've just decided it's not healthy for me to have this virus right now, and as long as I don't admit to it I don't have to have it, kind of like the kid who goes into the corner and says, "If I don't see you, you're not there," same thing. So, for a couple weeks, sometimes, I do it. It's healthy. It's not a bad thing.
SEMBER: Where, in the midst of this, did the two of you meet? At what point? Hadyou been tested and found that you were positive before you met?
POST: Well, yes. I was. I knew I was positive. She didn't know she was positive yet.26:00
WAGNER: I remember we were at a Narcotics Anonymous meeting. We had met at a dance.
POST: Please! My anonymity!
WAGNER: Kenny came over. I was sitting at a back table, and he came over to meand he said, "I'd like to invite you for coffee, to go to coffee, but I just got to tell you one thing. I'm HIV positive." I smiled and I said, "Oh, that's okay." Not knowing at all. At the time I had maybe two months clean, maybe sixty days clean, I had a gut feeling that I would test positive also, which I didn't reveal at the moment. But, because I wanted to go out for coffee, I kind of laughed the whole issue off; like, oh, it's okay, it's nothing. That's how I found out his status, and it really was okay with me, probably primarily because 27:00I knew what I had done in the past, and there was a good possibility that I would turn out positive. So, if it wasn't okay to be with him, then that kind of meant if I revealed that to somebody, I'd like them to be okay with me. That's how I looked at the whole issue.
SEMBER: Having this relationship, getting married and forming this family, howdid your HIV status affect that, if at all? Do you think you would have had this relationship, would have this family unit now?
POST: Yeah. Yeah, that would have happened if we were positive or not.
WAGNER: Oh, that--it definitely would have happened, but because of the statusand living as a family, there had to be--there's been so many decisions we've 28:00had to deal with that if there wasn't HIV, I think it would have been a lot easier to deal with. Like I say, when I met Kenny, I already came with my son. Then, at the time--We just told him last February, so, because of HIV, when you're dealing with a teenager and the decision, which was a two-year decision, to tell this child, because I felt that he should know--There was a point where Kenny had a difference of opinion and didn't feel a teenager should know unless it was necessary, but because of us going to the doctor so much and, like I said before, the dish cabinet that's full of medications, as opposed to a medicine cabinet, my son--who is fifteen, he's not two years old--was quite aware. He 29:00used to ask us, "Why are you going to the doctors?" and there came a time that he just stopped asking. There was awareness going on in the house. Something was wrong, there was this big secret. So, these are the kinds of issues when you deal in as a family, or when I watch Kenny, like he says, "go on strike," as his wife, as a person who loves him, when you're living with somebody else and--Like, I think he should take his medication, yet he makes his own decisions. So, it's standing and watching somebody make their own decisions, and I might feel the difference. There's all these emotional issues as a family unit, when you don't deal with life-threatening illnesses, that just don't occur. So, it causes a lot of friction in the family that I think wouldn't be there. 30:00
SEMBER: If one of you were not positive, do you think that would make for adifferent relationship?
POST: Oh, yeah. Sure.
WAGNER: Oh, definitely.
POST: Sure, definitely.
WAGNER: We have to decide which one, though. Who's the better caretaker?
POST: We'll let you run with that one.
WAGNER: Well, because, I know what happens when there's a family and bothparents are positive, whereas opposed to if one was and one weren't. I know when Kenny gets sick, or if I get sick, even though--It's like sometimes I get angry when he's getting sick, because in a relationship you rely on each other; you 31:00need each other, you love each other. So when he gets sick it kicks up all this fear. So, a lot of times--Because I don't like to be afraid. I get very vulnerable. I get angry, and like inside I feel like, "How dare you do this to me?" I have a feeling like, I know when I don't feel well, that's how I feel. The same thing happens. Not consciously, but we push each other away. Because it's, ah, we're both dealing with the same illness and we each have our own personal fears, and think about ourselves and then about each other and then there's a child involved. So, I think in a relationship, if one has it and one doesn't, it's a whole different issue.
SEMBER: There's a special way, though, because both of you have it, that you canalso understand each other. You say, "Yes, I kind of know--" 32:00
POST: Eventually, not always immediately. As a matter of fact: Very rarelyimmediately. But eventually what happens is communication takes place between us, on that level with it. It's usually after we go through a few changes, a few fights, a little displays of attitude; a broken ashtray, [laughter] things of that nature--then eventually we'll start to communicate, and once we communicate, then things kind of balance out. You know, it was always ironic to me, because anytime the issue was forced--By forced I mean anytime we consciously decided to do anything about it, together--it never worked. It never, It never goddamned worked, I don't care what, I don't care what she says. It never works. We tried going to a therapist, once, together, for HIV counseling in the relationship. The outcome was pure vicious-- 33:00
WAGNER: [laughter] It was terrible.
POST: After a month I decided it was totally self-destructive to continue withthis. And he agreed with us. We went to him at different times. Even when we participate in different things that we do now, with different support groups that we go to, it pretty much works out better if we do it separately. She has her opinions and I'll have mine. This way we're allowed to respect each other, because together we don't see things eye-to-eye. We don't feel the same way about things, and we certainly don't express them the same way.
WAGNER: I was going to say, you would think because, or assume that because bothof us have this, there would be this understanding, or more of an understanding, than if one did and one didn't. I think, on a level of love and compassion, yes, 34:00but in a daily, day-to-day living it's completely--Which baffles me. Every time like--It completely baffles me, because intellectually, I go, "but we should understand," and it doesn't work that way, and I think it's all revolved around fear. Fear of loss: him losing me, me losing him, what's going to happen to my son? You would think it would work the opposite, because we both live with this, but I don't find, in our lives, on the daily level, it doesn't work like that at all. Eventually it comes to that, but it could take days. It could take days to come to that, and usually by then either I'm feeling better or he's feeling better.
POST: By "the communication," what I meant by that, was the openness with that.Like, if she's not feeling well about it, it's okay for me to say that. Like, 35:00this sucks. The other day we were talking and she says, "I haven't felt well in about ten days." I said, "It's been about two goddamned years!" It's a resentment.
WAGNER: My response to that was, "You should've looked for a healthy wife, then."
WAGNER: That was my response. I took it like, "How come you don't understand?"Like, he doesn't want to be with me anymore because I haven't been feeling good. That's how I felt. Which I knew wasn't true, but that's how I felt. Like, why don't you look for someone healthy, then? And even though he has the same illness and--you know.
SEMBER: When you found out you were HIV positive, where did you go for help?Kenny, you mentioned that you went on this binge, this information binge, trying 36:00to find out as much as you could, and eventually you ended up with your doctor and got that sort of bottom-line thing. That was the most helpful thing that you heard, the "buying time [unintelligible]?"
POST: Yes. What I did primarily, even before I tested, was I started laying outa foundation. In my mind it sounds very difficult, but I know that in fact it wasn't, it was very simple, because I had nothing going upstairs, in my head, coming off the drugs and all. My mind was like a complete--It was like a blank blackboard. Any information that was coming into me at all, I was absorbing it, taking it on. So, everything I had learned when I put down the drugs and I started going to this twelve-step fellowship with it, I just applied to what I was doing. The person who tested me, my counselor at the Board of Health, was a member of the twelve-step fellowship with me. So, any direction that I had was 37:00going in a positive way, and the language and everything that was being used was being said. Nobody was talking over my head. They were telling me in a way that I understood exactly what I had to do and why I was doing it and what would happen if I didn't do it. So, nobody was telling me, like, "Well, you gotta do this and you gotta do that," because I wasn't doing things that way. They were saying, "This is what I would do if I was you," and things went like that. I was sent to the doctor. My doctor suggested I find alternatives besides him. He happened to be a very open-minded guy. He still is (I'm talking about him like he's dead). He still is a very open-minded guy. This is what I did. I went to the GMHC, which was an area there, because I still had a lot of "street" image 38:00and that with me, walking into a room with a bunch of gay men just didn't fit into my image of what I thought I was at the time. But, I did it, because it was important to me. I did it, and I found out that these were the guys that--The reason why they had the information available to them was they went out and they got it. It didn't take me long to figure that one out. I was a hustler from the street. If I needed money to get my drugs, nobody brought it to my door, I had to go out and get it. So, like I said, I just used that analogy with everything. So, I went out and got as much information as what I could, and I laid a pretty good foundation for myself with it, a support network, and I kept myself with people around me so that at times, when I did need to break off, I was able to break off with it.
SEMBER: And you? Who did you turn to?
WAGNER: For help? I started going to--Well, I was already in therapy, individual39:00therapy, about six months after I got clean. So, I divulged the information to the therapist, but also a friend of mine who works for the Board of Health, she was starting at the time with another man who counseled HIV people at Planned Parenthood in Manhattan. They were starting a woman's support group in Brooklyn, and I went there for about a year. He was the facilitator of the group, and I also started going to him once a week, one-on-one therapy because he was kind of in the field of counseling people with HIV. I utilized the GMHC, it was recommended to me that I go there, and they were wonderful with me. Also, for 40:00myself, at the time I went to the GMHC, there weren't very many women going there. There were about five of us. I was made more than welcome, because, first of all, it was like a woman going there and they kind of wanted to know how they could be of help to a woman living with the virus, financially, if I needed attorneys. I also went for legal help to the Brooklyn Legal Services, who were wonderful with me, to find out what I was entitled to as a parent, with HIV, with a child. Also, uh--Also, my personal friends--Basic--Really, what I wanted to do was go to my mother. That's really what I wanted, but I didn't until three years later. But I went to my friends. A lot of my girlfriends, who were either 41:00HIV infected or just were there for me, for emotional support. You know, but I, uh--Then, I also went to a few PA meetings, and uh, basically, basically that's it. In the first few years, on my own I did a lot of reading of information, because I like to read, but I dealt more with the emotional side of it than with a lot of information, as far as seeking out groups, to inform me. I think it was more that woman's support group, which there aren't any anymore, in Brooklyn. That's what really helped me. 42:00
SEMBER: What has been the course of your treatment? Medically andpsychologically, what, over the years, what kinds of treatment have you been through?
WAGNER: Oh, God. [laughter]
SEMBER: It's like: "Endless."
WAGNER: [laughter] I was thinking before, when we were talking about drugaddiction and things like that, I've had--Because I have trouble with my pancreas and my pancreatic enzymes are always out of whack, I've had to undergo a lot of uncomfortable tests, from sonograms, which aren't that uncomfortable, to pancreatic biopsies to endoscopies (which I'm starting the whole process again), and the part of being an addict in recovery and dealing with illnesses and HIV, and having to undergo a lot of these tests, what's happened to me is 43:00for a lot of the tests they have to give you narcotics. Because I used drugs for twenty-two years and I basically, on the whole, enjoy my life being clean, as far as my treatment or what the process to get the treatment, or to get certain medications that will alleviate a lot of the symptoms that I live with, the "uncomfortability" with this emotional side and the physical side is like, it's like a forever, it's like a never-ending thing of hospitals and tests. Two weeks ago I had GYN biopsies without any anesthetic. Because of all that, I had to sign a release. I didn't want to go into the hospital again, and put any drugs in my body, because of this disease of addiction that I deal with. So, a lot has 44:00to do with--I remember--You remember that time, Kenny, the first--? [Interview interrupted.] And because of my fear of putting a narcotic in my body, and this fear that I'll go on this mad run again, I chose to have this endoscopy without being sedated, and it was the most traumatic--I remember Kenny dropped me off--He says, "I'll look for a parking spot." I came out of there traumatized because, first, it hurt, they couldn't get this thing down my throat, and the whole part--It wasn't--It's like it doesn't stop, and that's the part of living with HIV, as opposed to other illnesses. Maybe cancer, I don't know, I don't have that, but my perception always is, you go to the doctor, you have something wrong, they give you some medicine and you're cured. The difference with this is 45:00knowing that it gets worse, it doesn't get better. Not that it's going to happen this week, but it seems that my personal experience is that it gets okay for some time. I might not have to undergo any kind of procedures for five months, then it's something else. So, I've had to do a lot of tests, and thank God, on a lot of them, a lot of them show up negative. That's also the other thing. You go through tests and stuff doesn't show up but the symptoms are still there, and the doctors don't even know, so it's like they send you for more tests. My hardest part in dealing with this is, when does each individual come to a point and say, "Enough?" You like say, well, okay, I'll try to live with the symptoms, 46:00even though they can't find out, or uh--So, once again, this Thursday I have to start this whole thing again, and it's like, when you ask the emotional side--I don't want to do it. I don't like to keep going to the doctor and going to the doctor, because a lot of the tests, they're not nice.
SEMBER: So, you sometimes go on strike?
POST: Yeah, not often. It's not a general thing, but when I get fed up with it Ido. That's how I deal with it.
SEMBER: Do you feel like it's been less complicated, your treatment, for you?Has it been--you know--does this--? Is it a comparable process for you, the treatment that you've been through over the years?
POST: There hasn't been anything that brutal. There's different situations, atdifferent times, for brief periods of time. But, overall, the hardest thing I 47:00had to do was figure out the time schedule for my medication. Yeah, now it's not that bad (because I'm on strike and I just don't take anything!), but there's times when I have to actually figure out, with a pencil and piece of paper, what time and what days I can take what. Some I take with food, some I take on an empty stomach, some I can take with other stuff, others I can't take with other stuff, some have to be taken completely by themselves. Some make me nuts in the head, some don't make me--you know, but--anxieties, stuff like that. One of the drugs I'm taking is a steroid and stuff like that. So, I pretty well have to stay on top of that myself. I can't give the responsibility of taking the medication to the doctor, or anybody else for that matter, so that's what I do. Outside of that, I haven't really had much to do. The only thing is, I found out I had to pretty much stay on top of it myself, with what goes on with me.
SEMBER: What's it been like, dealing with the healthcare system? In terms ofpayment, and having to go to hospitals all the time? How have your experiences 48:00been with that? Just dealing with the entire medical establishment?
POST: That's been, how do we say this? I'm on tape.
WAGNER: It stinks.
POST: The system in New York--Well, a lot of it in the beginning was myself. Ihad a little difficulty understanding people when they were talking to me, when they told me to come down to get the Medicaid card and all of that and to hook up with the system. When they told me to come down at 7:30-8:00 in the morning, it took a couple of months for that to sink in. I would show up at 2:00 or 3:00 in the afternoon. Finally, I had a friend of mine from Staten Island, where I was staying at the time, and he said, "Listen, I'll pick you up tomorrow morning, we'll get there and we'll get there on time." And that's what happened. He came to the house, got me out, and eventually I got hooked up with the, with the Medicaid card. Since then it's been pretty much, for lack of a better word, 49:00I'd say "slavery." I'd say my whole entire life, my attitude; everything has completely evolved around the system. I'm not knocking it, because if it wasn't there, God knows what would happen, but it hasn't been easy with them--You know, my, my access with different--What? I'm trying to say this without cursing. It's been difficult [laughter] with it, you know.
WAGNER: I was just remembering the time you went and Miss Johnson wouldn't letyou touch, and she didn't want to use the pen after she found out you had HIV.
POST: The case worker.
WAGNER: When you came home like a lunatic?
POST: No, I didn't forget that. But, that's ignorance. I've always had a hardtime dealing with other people's ignorance about this. What she's talking about 50:00was the case worker I had with the welfare. I didn't have a pen. She wanted me to sign the paper, at the end of the interview, and I didn't have a pen. So, I asked her if I could use her pen. She gave me her pen, I used her pen to sign it with, but she wouldn't take the pen back from me. She told me to keep it. She said, "Just put it down there." I said, "Here, take it, it's yours." She said, "No, you keep it," like that, and she took a tissue out of her bag and wiped off her hands, without even having touched the pen, just to let me know that this was why I was keeping the pen; that she wasn't really being nice at all! To this day I know she has a God in her life, believe me. To this day, I know that. Her name was Johnson, Miss Johnson, from the Jay Street Borough Hall office. 51:00
WAGNER: [laughter] And what did she look like!?
POST: Nah, I'm not going to get that crazy. But, that's how she was. Now, mydoctor, on the other hand, has been very compassionate. He doesn't take Medicaid anymore. He has a private practice. I started with him, in the beginning, and he's kept me.
WAGNER: Both of us.
POST: Both of us, for that matter, and the difference in the money, from what hegets from private insurance and what the Medicaid pays him, is quite a substantial difference. But, I've learned that in this area he's very compassionate, he's a good guy. I've also found that the accessibility I have to various treatments is extremely limited with the Medicaid. I went through a thing where I was pissing blood for quite a period of time, almost a year, and I 52:00found that, after it stopped, after we went through all these various tests and all, that I found out there was one test where they could have found out right away what it was. But, I couldn't afford to take the test, and Medicaid wasn't paying for it. They wouldn't pay for that one, so we had to do it the long way. But, this is what happens. But, the whole system is dictated with that. I'm not going to turn this into an Act Up meeting, but that's pretty much what we're about doing now, just dealing with that. In the beginning, I didn't want to go along with the Medicaid program, because I saw it coming and I knew what it was about through different friends of mine who had already been hooked up with it. I started looking into the feasibility of not dealing with it. I found that private insurance companies didn't want to handle it because of existing conditions, pre-existing conditions to getting it, you had a hard time with 53:00that. I found that employees, although they won't fire you because you have the virus, they might fire you if you show up ten minutes late, and they might fire you if you go to lunch five minutes too early. They might fire you for not shining your shoes right that morning. They'll find another excuse to do it, so, I realized right away what that game was about. The most important thing was just the general cost of the medicines themselves, so even if I found a private doctor and all this other stuff, the cost of the medication itself was astounding; that Medicaid became a necessity. Wasn't even something where I really had any choice about it. So, it pretty much dictates how things go now. Which is okay, I guess, I don't know. But, when I say it's okay now, I've grown 54:00accustomed to it. I'm quite familiar with it, so, the comfortability that goes along with it now comes from familiarity, not from any comfortability that the system itself offers at all, because the system sucks, big time, the whole thing.
SEMBER: You would underscore that?
WAGNER: Well, my personal experience of [laughter]--What was the question?
SEMBER: What was it like, dealing with the entire medical establishment?
WAGNER: "Medical," meaning--?
SEMBER: Meaning the hospitals, the doctors.
WAGNER: Okay. My experience dealing with the hospital part; I remember, two anda half years ago, because I started with a lot of GYN problems, I was put in for day surgery. I had to go in for a D&C and a biopsy because my Pap smear shows up 55:00severely abnormal. They left me in the operating room--They told me the procedure--Remember, you waited how long? You didn't know what happened? He was waiting outside. They said it would be an hour. They left me alone, all ready, prepped for this operation--What was it? A good six hours, alone there, because they told me they wanted to make sure that everybody else was taken care of before they'd deal with an AIDS patient.
POST: Oh, I forgot about that, yeah.
WAGNER: When the doctor came and took--Thank God she was okay. The lady doctorwho was performing it, she went to put the IV in and she missed and blood squirted on the sheet I was laying on--the gurney or the stretcher--and she said to me, "Quick, let's cover that, we don't want anybody else to see it because they're going to freak out and they're going to have to prep you all over 56:00again." So, here I am, nervous, I'm going under anesthetic, and I'm going through all these feelings, really feeling like a leper. Like that's how--you know what I mean--I've never had leprosy, but I've lived in countries, all in Southeast Asia, where there's this, and that's how I felt. They left me waiting there for hours, alone, in the corner and after, I remember they--When I came out of the anesthetic I went into shock. I started shaking, they had to give me oxygen, and one of the nurses didn't want to--They put me by myself, in one room, one of the nurses wouldn't come in, she didn't want to deal with me, she didn't want to--and I took it. I could see no other reason, because I was alone in the room, and everybody else in recovery was all together. My first feeling, and I don't even think it was a feeling, I think it was based on fact, because I was an HIV patient. With my own personal doctor, he's wonderful. He's made both 57:00me and Kenny--I never feel like I'm different, I never feel like I'm inhuman, I feel like I'm a human being. But, dealing with hospital situations, there are many people, although they're nurses, they're doctors; they're very ignorant when they deal with people. They forget the human aspect, they forget the fear, and they're so afraid also, of getting AIDS that the way you're treated, it's like--You're mistreated. They had told me that day--I asked after, because--I didn't file a formal complaint, because there was really nothing to base it on because there was really nothing to base it on, other than--They gave me this thing, "Well, you were scheduled last." When I spoke with the doctor, they said they wanted to make sure everyone else was finished, because they have a special way of cleaning the operating rooms after an HIV patient. This time, when I've 58:00been dealing with the same GYN problems, when I spoke with my doctor, the HIV doctor, he had said to me, "They're not going to put--They don't--" He was very point blank with this. He said, "When they put a woman in for D&Cs in like this, Cheryl, you want me to be honest with you? They don't like to put--Basically, for your interest, because you have HIV and for infection, they don't like to put people with AIDS into the operating room because there's too much blood. So, dealing on an individual level, the doctors I've had are wonderful, because that's what they deal with, HIV people, by choice. But, as far as hospitals--Also, my experience, I've had to have a lot of dental work, and I've 59:00never told them, which is not good for me, because--Out of fear that they won't want to take me. Also, to find dentists who'll take Medicaid, to find doctors--and dealing with the whole system, it stinks. I remember when I first got into recovery; I used to work down by Wall Street. I had to stop working, and at this time--This was before I got tested. I was getting sick, I was getting the fevers and my lymph nodes--and because of the way the system works is that I couldn't afford--because I wasn't working at the time, I had to go from working to unemployment, and the amount of money I was getting from unemployment was too much to be covered by Medicaid, but not enough to have Blue Cross and Blue Shield, and there is no--unless you walk into Bellevue, like that, in the emergency--So, for ten months I couldn't see a doctor. Then, I had 60:00to wait 'til six months, until the unemployment finished, to go as a single parent with a son to get Medicaid. Okay. The whole process, from working to unemployment to welfare--And, as a woman, I was refused, even with letters from my doctor, an MQ-11 form from SSI (this was two and a half years ago), which they were refusing, they were turning down all women, basically, who applied to SSI, and I got a letter back from them that, although, "due to your chronic blood disorder and chronic illness, and even though with the recommendation from your doctor that you were unable to work at that time, we've refused [laughter] your acceptance on SSI because we feel that what you did before, as a receptionist/typist, there are medications to alleviate your symptoms and you 61:00should be able to work again. If you have any discrepancy, you can file--You have sixty days to file--" What do they call it? A complaint? I forget what the word that SSI uses. A fair hearing. I said screw this, so that's when I went to see the attorney from Legal Aid Services and he helped me get on "DAS," because I qualified with the symptoms that I had. But, when you ask about dealing with the system, we had to use--When Kenny and me got married, the way the system works is that if you're an individual, living with HIV in New York State, you're allotted a certain amount of money, which you can't live on. It's ridiculous. Although "DAS" does pay my rent and gives me money for my son, because he's 62:00still a dependent, and food stamps, if there are two people; If you're married, living off of the system, you get $230 a month less because your standard of living as a family is a lot less [laughter]. I don't know whether they think you live on love. I don't know. So, that's been my experience, with the system, with Medicaid, and with hospitals. Other than my personal doctor, it's a horror show.
POST: Over and over and over again I've seen, through everything we've gonethrough together or separately over the last four years, for myself the most difficult thing I had to deal with was ignorance. I just have a low tolerance for people when they do things like my friend with the pen, and all of that. I get angry. But, as far as my treatment and what had to be done with me, I've 63:00always found a way to do it, just from being aggressive. I've found that nuisance value. Over and over again, I've seen Cheryl go through the same situations in different ways. What she had to deal with wasn't just an emotional thing, it was actually physically being told "no" over and over again, for no reason other than the fact that she was a woman, and these women's issues weren't documented yet. There was no documentation. The Department of AIDS Services in the city of New York didn't even have a criteria for AIDS, for an AIDS diagnosis for women. In reference to any part of the--any women's organs, anything that women had going on that was different from what men had. Because all documentation always began with "he" and "him." It had nothing to do with women at all. And even guys talking, the overall thing was, "Well, it's a woman, 64:00and like, you know, fuck it. It'll happen," or, "They'll get over it." I've never seen anything like it. If I was in any pain or discomfort or anything, it was taken care of. It was taken care of immediately. I've watched her countless times get sent home, from different clinics, different doctors, different situations, and in pain. In pain! For no other reason than the fact that she was a woman and they just didn't have any documentation on this. "What do we do with this? Nobody seemed to know." It's like a new direction that this whole thing's taken now.
WAGNER: I just wanted to--When I thought of that--The last time when I couldn'tfind a woman doctor, a gynecologist, who dealt primarily with women with HIV. I went to a clinic, again in Brooklyn, because I was, for months, having problems. 65:00I was getting sick, and they took my chart--which is like a novel, already--and they looked at it and she said to me, she said, "Oh, yeah. Women with HIV, they deal with this," she patted me on the shoulder, and she says, "You're just going to have to learn to live with it," and sent me home--Okay?--With pain killers; nonnarcotic pain killers, because I specified nonnarcotic. I went back to my personal doctor crying, I was hysterical. I said, "Am I crazy?" And he said to me, "What did she mean, you have to learn to live with it?" Because sometimes after you go and you get the same answer, because they have--Either they don't want to deal, or it's a clinic and you're a Medicaid patient, or because it's a clinic; it's revolving interns and there's no personal relationship, which is due to the Medicaid system. Like, you just don't get the correct healthcare. So, 66:00when I went to my doctor and he says to me, he says, "You know, learning to live with it and having to live with symptoms, you don't have to do that." So, I felt like I wasn't--I begin to feel like I'm crazy, maybe I'm making these things up, because you're taught: Well, when I was little, if you have something wrong, you go to a doctor and they deal with it. My experience as a woman dealing with HIV, over and over and over again, has been, like you said, sent home many times, or left in the operating room, or just not dealt with.
SEMBER: If it's not too personal, do you want to say a little bit about whatsymptoms women with AIDS sometimes experience that--
POST: Is he throwing up over there?
WAGNER: Yeah, a hairball, kind of.67:00
SEMBER: --I was just wondering if you wanted to actually specify what women withHIV might go through that you've been going through, that gets ignored in the way in which you can describe it. Or just gets so reduced.
WAGNER: Well, I just feel, as far as women are concerned, like Kenny was sayingbefore, even a lot of the following of the whole disease has basically been with men. What I find or what girlfriends of mine who deal with HIV--It seems to manifest itself differently. Not always, but a lot of the different symptoms in 68:00women, a lot of gynecological problems that before they used to look at--that all women get, but; Chronic yeast infections, dysplasia, which is cervical cancer, uterine cancer, abnormal Pap smears. As far as their monthly periods; either bleeding too much, not bleeding at all. A lot of--These were never addressed. You know there's no--Like I said before, with myself--And also, as a woman, on the emotional side, women who w--The whole issue as even women who are HIV and get pregnant and make decisions not to abort, that whole issue with 69:00abortions and HIV. Then, there's no prenatal care I know for, for--There was one woman at our house last night who was talking about; she's HIV, she's pregnant, and she decided to have the baby. They brought her through a hospital, the horror show, to show her what would happen to her and what would happen to her baby. They brought her through the pediatric ward dealing with AIDS babies, and "Look at what she was doing, if she made this decision to have the baby." Kind of like showing her, "How can you be this," this is what she was saying, "How can you be this kind of person who's HIV and makes the decision to have a baby?" There's no prenatal healthcare for women with HIV. They really have no idea, really, about anything going on with women. Like I say, for the last six months 70:00I've been having gynecological problems. It took me a good four months to find a doctor. There's only one doctor, in New York Hospital, who has a private clinic, who takes Medicaid and deals with women with HIV. Her whole staff is well versed in HIV, and even when I went there--I had to have hormone shots two weeks ago, and even as far as with her, who's willing to deal with women with HIV, there's been no long-term studies. So, the treatment they've been giving me, because I was bleeding every ten days, and they're finding that women with HIV, their hormones go completely like--My hormones were getting completely out of whack where I go into severe depression and bleeding all the time, and just from the fact of bleeding all the time and knowing I have HIV, it was emotionally a lot 71:00for me, because sometimes I even skeeve my own blood. The treatment they were giving me is--are these hormone shots. They really have no reference points, other than a few women who have had that, and it seems to be going okay. There's been no clinical studies of any of this. I know, my girlfriend, who has AIDS, who has cervical cancer or some form of cancer in her cervix that they think is HIV related--Like I say, they know, for example that Kaposi's Sarcoma is HIV related. They have no idea that this is the cancer non-HIV women get, so they're treating her as a cancer with HIV, but yet she's dealing with Bellevue Hospital. 72:00They've put this woman through hell. Still, she has not been operated on. She went to go and get operated on, her platelets dropped too low to be operated, the doctors didn't want to operate. Now she's in the process of--She also, to try to find a specialist who deals with this and it seems, uh--Like I say, it seems to be that symptoms are manifesting itself differently in women. Not all of them, but because of the anatomy and women's bodies are different, this is just other organs that the HIV can manifest itself in, and they just haven't dealt with it. They haven't dealt with it at all.
SEMBER: That's really useful to hear. How much time would you say you spend eachweek dealing with HIV-related stuff? 73:00
WAGNER: "Twenty-four seven." [laughter]
SEMBER: "Twenty-four seven." What does that mean?
WAGNER: You mean thinking about it, or--
SEMBER: I'm sure thinking about it is "twenty-four seven."
WAGNER: --or do you mean actual action of doctors?
SEMBER: Of those things that are directly having to be done because you're HIV positive.
WAGNER: I know in the last two weeks, two, two and a half weeks, I've had abiopsy, a cervical and uterine biopsy. I've been back there, treated for hormones. I've been back to my other doctor for blood tests for my pancreas enzymes. I've been to the pharmacy twice to get the prescriptions filled, and I'm going this Thursday for a sonogram, and I have to go to the pharmacy to get 74:00the medication to take before the sonogram. So, in two weeks, it's been five times for myself, to doctors or hospitals. And you too.
POST: Well, generally speaking, I go once a month, to the doctor, when there'ssomething going on. Like now, with the platelets keep dropping, then I would go once a week to the doctor. Aside from that, we spend two hours a week in a treatment [unintelligible] meeting.
WAGNER: How about the time also when you were going for radiation therapy?
POST: That's not going on now, that was before.
WAGNER: I guess it depends. You know, I guess it depends. I mean, there are someweeks that none of us go to a doctor, other than just taking the medication as prescribed. 75:00
SEMBER: But then you're also--you're going to--
WAGNER: Then there's SSI.
SEMBER: Yes. The meetings with the various--
WAGNER: --the caseworker coming here.
POST: I'd say eight to ten hours a week.
WAGNER: At least.
POST: Actively, in some area or another with it; either on a support level, or amedical level. Sometimes it's just networking with friends. Every two weeks we have friends who meet, and it's just networking with each other, just to keep each other informed of what's going on now.
SEMBER: What did you know and feel about HIV before you actually had to dealwith it with yourself?
POST: What do you mean?
SEMBER: Like, before you were diagnosed and you had to start going through allof this stuff, to take care of yourself, what did HIV mean to you, what did you feel about it? There was one little example from something you said. You talked about how, when you first started going to GMHC, it felt weird, going into a 76:00place with a lot of gay men.
POST: Oh, I see what you mean. I was going to--As I said to you before, I wasgoing to Positive Anonymous meetings before I tested positive. So, pretty basically, at that time I was still under the illusion (and I emphasize "illusion") that knowledge was a good defense for this. I found out that there wasn't as much knowledge about it as what I would have liked to have seen. There was a lot of information being put out by a lot of different people, and most of it just didn't apply to me. What applied to me was different. My prevalent feeling about it has always been the same. It's always been stigmatized. It's always been a feeling of--How would you say it?--Dirt. How I've always thought 77:00of it in my mind was the last cotton from, like I said, the last shot of dope that I took. Just that last dirty little piece of cotton on the bottom of cooker, like that, somehow got into my blood. That's always been my prevalent feeling concerning it, always. You just learn to accept it, I guess.
SEMBER: What's changed? What's changed in your attitudes and feelings?
POST: Acceptance. That's what changed. It's going through--It's not something Ireally have any control over. Just the time factor in itself has been a situation--I don't know how you'd say that. From dealing with it over a certain period of time, I've started to notice certain patterns do take place and there's a certain cycle that evolves from living with it, for myself, anyway. 78:00Once I see the cycle--It's not predictable. It's not something that's predictable with it, you know, but I'm not like okay with it all the time and I'm not fucked up with it all the time. But, when certain things happen, basically, like I said before, as things stay pretty much the same, and familiarity is there and I get a little more comfortable with myself and with what I'm dealing with at the time, it's okay. I refuse to let it--I refuse to walk on a tightrope with it. I absolutely refuse to do that. I refuse to allow it to take over my complete identity, where I'm not Kenny, a person, anymore. All of a sudden I'm Kenny, a guy with AIDS. I refuse to allow other people to identify me that way. I absolutely refuse. I don't tolerate it. If you were to do it, I would walk away from you in a minute. I have no tolerance at all from 79:00it. Basically, acceptance is what's changed. I've learned to live with myself with it, I've learned to live with her with it, and it's gone into my life outside. I'm not always so talkative about it. I've grown to understand that although there's a great need, there's a great need for this thing to be talked about out in the open, and there certainly is a need for people to be aware of this. The reality is the reality, and the reality is that the people who hold the purse strings in this city aren't going to let go of anything until it hits them in their own goddamned backyards, just like everything else. Once it starts doing that, then they will become more open and start listening to what we were saying to them all along.
SEMBER: What did you think and feel about AIDS before you became close with80:00Kenny, before you had your diagnosis?
WAGNER: Not too much. You know what I mean? To be very honest, before, like Isaid, when I was using or in jail, I didn't--I mean I thought about it, I read about it, I was intellectually knowledgeable about it, like information--wise, because I'm just interested in science and medicine, but until it was in my personal life--not only myself, but many friends of mine--I really didn't deal much with it, other than knowledge or what little was on the TV. But, once I was told and then had to deal with every other aspect, it has become for myself, 81:00even though I don't like it. I would like to say it doesn't control my life or my being, but in actuality it does. I remember the day, which was a year ago this November that I sat in the living room and felt the need, or wanted to tell my mother. Before I was diagnosed, even though I dealt with it, and I guess maybe in a way people who aren't infected or affected, until it hits you, like Kenny was saying, personally. But I mean, I remember the day I had to tell my mother. It was horrible. It was: I felt a lot of shame, I felt--Not for who I 82:00am, but just that this was something that I didn't--I felt that this was something a daughter should not have to tell her mother. Then, which was worse, was the day we told my son. That was, even to this day, I think the hardest thing I had to do in my life. I just don't feel it's right that a mother--Like, I grew up as a child not feeling so safe, in a somewhat dysfunctional household, and since I've been in recovery, I feel like a parent's responsibility is to make the child feel safe. I'll never forget the look on my son's face. There was this--I can't even describe it. It was horrible. I was shaking inside, and I remember he started poking me on my face. He's going, "My HIV mother, my HIV 83:00mother." He looked at me and he says, "But you don't look different, but you are." And I said to him, I remember the day that I found out that's exactly what I did. I went home and I looked in the mirror and I said, "Cheryl, you don't look any different." But everything changed. Everything completely--Like I say, it doesn't control. Or, I would like to think it doesn't control me in the sense that I don't think of other things anymore, but from the day, like, I was told, everything was different. It's a type of control, not like a--with some sort of acceptance in it, but it has changed. It's changed how I look at how this whole issue was dealt with; because there's a lot of--I don't have so much personal 84:00shame with it, because I would like to think I have some kind of dignity as a human being. But, I know with dealing with the outside--Sometimes we'll walk down the street and we'll be talking and Kenny will go, "Shush, the neighbors." I don't like to feel, like, ashamed of who I am, even though I don't go around--And there was a time right after I was told that I felt like a had a tattoo on my forehead that says, "Cheryl has HIV." That's how I felt, and I felt people were looking at me; that the whole world knew. I remember that was my son's reaction, for days. He kept on going around, running through the house, going, "My HIV mother, my HIV mother." He couldn't see me anymore as Cheryl-his-mother, he saw me as Cheryl-his-mother-who-has-HIV. And when I was 85:00first told, that's how I saw myself: as Cheryl-with-AIDS, or the AIDS virus, and it took some time to realize that I was Cheryl, living with HIV, and not with this tattoo across my forehead. But, it's very different for me, as opposed to my concern for myself, my family and the community, as opposed to before I knew, how I dealt with--I didn't really deal with it.
SEMBER: How have your sexual practices changed?
SEMBER: In a word.
POST: Yes, that's pretty much it.
WAGNER: In a word. Do you want me to talk? [laughter] I can be very open. I feel86:00in conflict here--Should I--?
POST: Well, now, when I get an erection it doesn't go straight up anymore.
WAGNER: When we first met, okay? We didn't have any sexual contact for monthsbecause, first we knew--When we met I wasn't tested yet, we knew he had the virus, and then there's this thing of safe sex and using condoms. And I remember, I mean, we just couldn't do this. Do you know what I mean? I don't know what happened with Kenny's feelings, but the physical part didn't work, and then I was trying to say, "It's okay, it's okay," and just the whole thing wasn't okay. Not so much that part; that the physical part didn't work, but because of HIV--Like, once again, I say, because of this virus, sex took on a 87:00whole different outlook. Then, when I was tested, there was the issue, well, both of us have this; should we practice safe sex, or shouldn't we? So, you get opinions from a doctor, you get public opinions from support groups, you get opinions from friends. Then we come to an opinion and a decision with ourselves, which, at the time, a few years ago, was, well, let's not practice safe sex, because when we tried it, it didn't work. About a year later, I remember when you came to me, and I don't know what brought it up. He sat down next to the bed, he says, "What do you think? Should we try again?" I said, "Nah." Because it's--and--It affects people's sexual life, whether it be emotionally-- Also, I know the times when I don't feel good, as far as even sexually, I feel that if I 88:00don't feel good long enough and there's no sex, he's not going to want me anymore, the relationship won't work, and I just know from talking with other people who will allow themselves to be a bit open with this whole issue. Because a lot of people would like to say, oh, everything's fine. Mostly from that women's support group, that was the only place where women got a little bit comfortable, after a few months, saying, "There is no sex." In most relationships I know, where there are two partners or one partner, it's a touchy situation to even talk about because most people will want to give the illusion that they're this happy couple, whether it be woman to woman, man to man, man and woman. From my experience of talking to people, when they do get honest, there's always a problem where there's HIV, whether it be the choice to practice 89:00safe sex, or the fear involved. And, like Kenny says, it's less, and I've found that with every couple. Then, like this girlfriend of mine who was just in the hospital for two months. This was a big concern with her and her husband; that he was going to start going to other women, because she was very sick. She's got full-blown AIDS and for two months, and we'd talk over the phone--"My husband has needs and I can't fulfill them"--because of the lack, due to HIV, and she was in the hospital for almost two months.
SEMBER: What impact did it have, not necessarily your diagnosis, because youwere diagnosed after you had been through rehab? Maybe I'm assuming something. Have you, after your diagnoses--Did either of you actually use drugs again, or 90:00have you remained--?
WAGNER: No, no--
WAGNER: --thank God, so far. [laughter] Thank God.
SEMBER: You were mentioning an incident earlier, where you were looking for some[unintelligible] and you actually listened to--
POST: Oh, yeah, we were still using, that was always the case. But we never--Idon't know how to explain that. I can remember being in a car with a guy; a few of us were going down to Williamsburg to purchase narcotics. So we're coming back, we got the drugs in the car and we decide, well, we're gonna get off in the car. So we pull over to the side in the car. Now, there's me--I happened to have been living in the house at the time--I was in, pretty much, control of 91:00what was going on around me here. The guy sitting next to me, he also lived home and he was a clean guy. The guy sitting in the back; well, he was from the street. He was a dirty guy. So we decided that--But he was the only one in the car that had a needle--So we were gonna use his works, but because we were afraid of getting AIDS, we weren't gonna use the same cooker. [laughter] So we had to go to the grocery store, and buy another bottle of soda, take out the thing out of the inside and clean it all out and all of this stuff here and we used this different cooker.
[Interview interrupted. This interview was transcribed from a videotape sourcein 1992. The
following 440+ words of interview transcript represent content that was not transferred
from video to audiotape.]
POST: --hadn't taken a bath in a couple of days.
WAGNER: That makes sense.
POST: That was the logic we had at the time. I could think of a thousand storieslike that. It was always there, it was always being mentioned, but--And it was certainly reality. But, our reality, my reality at the time, was so far removed from reality itself that it was ridiculous. The fear of death was ridiculous. Getting up in the morning was a fear. My lifestyle in general, just being an IV drug user; I was not what you would call a functional drug addict. I was not functional at all; I didn't keep a job, I didn't keep friends, I didn't keep family. I was completely isolated. That's how I did things. The fact that something was coming along with something new, threatening me with death for living my lifestyle, was ludicrous. To me, at best, here I was, I was a White guy, I was buying drugs wherever I wanted to buy them, and I always stood out like a sore thumb. You'd go up to Harlem, someplace like that, and the fear of somebody taking you off for what you had or physically hurting you--because I was certainly physically hurting other people, taking what they had--was always a threat to me. My life was always being threatened one way or another, so I was kind of immune to that; I was kind of walled up against it anyway. Now, here's somebody coming along telling me, "Listen, you can catch this little bug from a needle that you use, and if somebody else used it and if they had it." My attitude was, "So what? What difference does it make, really? If I didn't catch it this time--" Sometimes I got real sensible and I'd say to myself, "Well, you know, it's possible, what they're saying, but I'll straighten it out next time. But, this time we'll use the dirty, etc. Next time we'll get it straightened out and make sure this never happens again like this." That was stable thinking at the time. Even now, when I'm clean, I try to be careful. I see people and the way they practice things and I would say things, like, "Do you use condoms?" You've got these crack-heads coming back from the Marlboro Projects over here. "Are you using condoms?" This girl-- Anything happening here? Are you protecting yourself? "Oh, yeah, sure. Definitely." And I just look at her, because there isn't any sense in saying any more to them than that, because that's it. They're going to do whatever the hell they're doing.
SEMBER: You were both using drugs for a [Audio resumes here.] long time, so youknew the scene pretty well. What impact did the arrival of the AIDS crisis have, and what is it having now, in your opinion, on these communities that you were a 92:00part of, that you still probably have friends in?
POST: I've known people who were very seriously affected by it, and it didchange. These weren't people I ran with. I did know people who were "functional drug addicts." They kept jobs up, things like that. A very good friend of mine, the guy next door, passed away from AIDS, and from that point on, it was like, when we went over to his house to do anything, he did break out with a box of brand new syringes, and everybody took a new one. Him and his wife, they had their own set, separately, in another room, which they took out and they didn't share with anybody; any of these things. There were people that took 'em serious, that took it serious. I wouldn't want to give you the impression that it was ignored by everybody. I did know people who took it quite seriously. I 93:00just know that the people in the street, the poor people, didn't change anything. It didn't make a bit of difference. The same emphasis that was placed--It wasn't placed, it wasn't equally--The education wasn't equally distributed. If you went down to the South Side in Brooklyn, down to South Second and Roebling Street, down around there, if you found a few activists down there with plastic bags, with what we were talking about before--with bleach and cookers and explaining to the people how this thing was being transmitted--that was on a good day. That meant the sun was shining, and there was money in the streets, and they weren't afraid of being hurt or something, and that's what happened. On the other hand, if you came out here to Sheepshead Bay, or even to Bay Ridge, into these cleaner areas, you'd find that these things were being put out in the public schools. There was pamphlets on the corners, being given out 94:00in candy stores. It was more openly discussed, primarily because they weren't openly affected by it. It was a dirty disease. So, that went along with it.
SEMBER: Cheryl, did you see any change?
SEMBER: --In the communities that you were moving in?
WAGNER: Well, I can say, since I've gotten clean I really don't--I really can'tsay, because since I've gotten clean, the same communities or the circles of friends, I don't hang out with, so I've really completely broken most of those ties and those neighborhoods and kind of choose not to go back into. But, I do know of two personal friends (one just passed away last May) that I used to use 95:00drugs with--
POST: Who was that?
WAGNER: My friend Nino--that died of AIDS, and a friend of mine, his daughter,who--We all used together; my friend, myself and his daughter--and this was one of the people I talked about before. He's one of the few people I know, he shot drugs for thirty-seven years and he's HIV negative. His daughter is HIV positive, I'm HIV positive, another friend (and this was like a small circle, like we used on a daily basis, together), and I know from seeing her occasionally or from talking to him and his wife; in the community itself, from what--like her attitude is once you're in the grips of this disease and as far as you're an addict and you're using, she was in the hospital. They thought she had toxoplasmosis, she's hooked up to amphotericin, and she's having people come 96:00from East New York, bringing her heroin. And here's her father, over five years--He'll be clean six years, her mother is clean four years (her mother was on methadone for seventeen years), her ex-husband's in jail, living with AIDS (he was sentenced to fifteen years), I have the AIDS virus, she knew my friend Nino. Her new husband, who was still using, has been diagnosed with TB, low platelets, but is in complete denial because he's still active on methadone. He's never even gone for the HIV test. So, just from speaking with them, I don't think anything has really changed in the community as far as the people's actions who are still using. She has all of this awareness. We've tried to get her into detox. The Samaritan has a special place for HIV. It just seems like in 97:00the communities, as far as--I can't even say on the individual--Of course, when I was using I didn't really belong to a community. It was wherever the good drugs were, I traveled. I mean I even went to different countries, personally. But, it doesn't seem like much has--Like there's more awareness but, like I say, even when I was using--And I remember after Diana died of AIDS, it's like, on a good day, if we could all have our own set of works, there was this weird form of denial that--And that was only on a good day. But if there was only one set of works and everybody had to use them; that was the way. I can't imagine that changing for an addict, from my personal experience.
SEMBER: When you were going into these neighborhoods that you would go into, toeither go and buy or to go and use there, in the early '80s, were you noticing 98:00things happening that let you know that there was something different? Something different had arrived on the scene, that there was now--?
POST: Well, first of all, during the '70s and the '80s, I wasn't going in there.I was there all the time. I lived there. I wasn't going in there and coming out. I didn't live in the Promised Land. We were hearing bits and pieces of it. We were hearing stories about it, and everybody knew somebody who died from this thing. Everybody had a martyr in their backyard someplace along the line. It was, uh, it was basically a lot of shit. The only thing I ever found to be of any significance was people were--There were people who were, specifically, speaking activists, who specifically came into certain neighborhoods and became 99:00known themselves. The only way this thing would ever change anything in these neighborhoods is to be told. The repetition of it: It has to be done over and over and over and over and over again. It has to be done constantly. It has to be brought--People turn on their TV sets, they have to be able to see it. They see the billboards on the sides of the buildings, to have to see it. There has to be graffiti written on the goddamned brick walls concerning it--you know, "Safe sex, use condoms, don't share your needles"--people need to hear these things over and over and over again, like, a thousand times. When you're using drugs, it's not the same ballpark. You know, they're not--I certainly am not the same person now that I was when I was using drugs. I certainly wouldn't have spent this amount of time listening to you or talking to you unless I was taking something from you. There's just no two ways--There just isn't any two ways 100:00about it. These people today, they're no different. They're no different out there. I understand that. They need to hear the same thing over and over and over again, because even as ridiculous as that story sounded, when I told you about me and my friends in the car and we wouldn't share the cooker, we wouldn't have gotten that little bit of idiotic awareness of what was going on if we hadn't heard it a million times already, and we only heard it because a couple of us was on the methadone program and they had signs up in the thing, when we were waiting to be medicated and we would read about it. It's a message that has to go out and it has to go out to these areas over and over and over again, constantly. It has to be repeated and it has to be told. There's no such thing as, "Well, we told them and they know it now." That's nonsense. They have to keep being told. Everybody has to keep being told over and over and over again. I talk about it in reference to drugs, because that's my experience with it, but 101:00what I see now driving the cab is even in the rich neighborhoods, these young people have to be told the same thing over and over and over again, and this thing, and the awareness about it has to be brought out over and over and over again. The point of reference being because the stigmas that are attached to it, you know. I can't tell you I have the virus because you're automatically going to figure I'm either a gay person or I'm an IV drug user. How many people are walking around with signs on them--"I'm not gay and I'm not an IV drug user. I'm heterosexual and I got this from a drug trans--from a blood transfusion in a hospital." How screwed up are these hospitals, you know what I mean? It's ridiculous.
SEMBER: Can you remember the first time you met someone who you knew was HIVpositive or who had AIDS?
POST: Yes, definitely. My first experience with it, yeah, I can remember it102:00quite clearly. I was in the Brooklyn VA hospital with--Now, I've met people since--before this experience I met people but I didn't know that that's what they had. The first time I had an experience where I knew what the person had, he was in the room next to me at the VA hospital, and he definitely had AIDS. He knew it, and he told me that he had it. I got to see firsthand the difference in the treatment he got and what I was getting. I had tuberculosis, which is also very communicable or whatever you want to call it, like contagious, at the time. Yeah, I can recall that quite lividly. They wouldn't even go in his room to clean it up with a broom and a mop. He had to go out in the hallway and yell at people to come in if something spilled in the room. And he was very weak. At the 103:00time that he was in the hospital, he had--I forget what they call that. It begins with an "R," he was going blind. He couldn't see. Because he used to get in the wheelchair and they used to take him down to the paid phones and me and this other guy--One guy would hold him up and I would dial the number for him because he couldn't see the numbers on the phone to use, and the staff at the hospital wouldn't do it. The VA hospital down there, they wouldn't make a phone call for him, and he kept trying to let his family know where he was, because they had found him somewhere, to bring him in there. I remember the anger and the frustration with him. Ha.
SEMBER: Cheryl, do you remember the first time you met someone that you knew?
WAGNER: Yes, definitely. It was when I came out of jail. And--but it was funny,104:00because this woman, she passed away now from AIDS, but she told all of us she had AIDS, and we just used to go around and say, "Diana's crazy." She had medication all over; Bactrim. She was being treated at Sloan-Kettering at the time, and New York Hospital, and she would tell us she had Candida of the esophagus and I believe she had lymphoma, and we all knew Diana had AIDS. She told us. But, I was just sitting here thinking that like, I just can't believe I wouldn't accept it. Now, I don't know if that was because she was a friend and I 105:00didn't want to accept that she had AIDS. And also because of our drug use and we were all sharing needles and things like that, that if I recognized that she had AIDS it was quite a possibility that I could have been infected. But she was the first person, and that was like 1985 or '84. Prior to that, I was living in Africa and India, and it just--There was just no such thing. I mean, now, reading AIDS is so prevalent in Africa and India, the third world countries, more so than here. There just wasn't that word--I mean there wasn't even--let alone knowledge. It just wasn't there. Nobody knew about it, there was no information from doctors to people, to friends of mine. It just, you know--We 106:00talked about parasites and all other things, Malaria, living in third world countries in the tropics. But, it must have been there at that time because thousands and thousands of people are dying in India and Africa. It seems like the virus has been there longer than here, and I lived there for seventeen years. Until I came to the United States, and like I say, my first contact was in jail. A woman in the tier below me died of AIDS. That was the first time I heard the word AIDS. I really had no idea what it was. They blocked off the whole tier, they took everybody out of their cells, and they closed it off for three days. So, that was--those were the first two people; after that there were many. After that there were many, but until I--when you say, "remember''--until 107:00I got clean and stopped using, I could really say that was the first time I met people with AIDS, because while I was using there were many people saying, "Well, this one has AIDS, this one has--" but there was such denial, so like, nobody had it. None of us had it.
SEMBER: Kenny, you were talking just now about how you think that in order tomake any difference, people need to hear about this stuff over and over; that there needs to be a continual repetition of the stuff. What has been your involvement with education and service groups, that you've been a part of, that have in some way--that you feel in some way attempted to do this in Brooklyn? Have you--?
POST: With the car service, I drive a cab. I do it on an individual basis, oneon one. I have young people that I have in the car and I don't preach to 108:00anybody, I just mention it to them, over and over again, so it doesn't sound like it's something--My idea in doing this is that it's not something that's being brought out in an educational format. It's not something that a fourteen or a fifteen-year-old kid is hearing about in school, where it's being taught. It's being told by a regular guy in a car. They might listen to that, which I've found does happen. I'll share my own experiences with certain people, if I feel comfortable with it, in the car. I'm also a member of Narcotics Anonymous. I speak quite openly about it in meetings. The only place where I really don't speak about it that openly is in my office at work, because I'm just a little nervous with that. My boss might say, "Well, don't come back," because we do deal with the public. So, I don't speak openly about it there, but I don't keep it a secret either. I just don't volunteer any information there. 109:00
WAGNER: What was the question, I'm sorry?
SEMBER: Were there any education, community, organizations, groups that you're apart of in Brooklyn, that you've--
POST: Our own network, too, that we do, right?
WAGNER: Yes. I can say really, as of now, I don't belong to an organization thatdoes any particular outreach. There was--Two years ago I was offered to come and join Life Force, which is women against AIDS, but just at the time I was just dealing with too much physically, myself, and my son was sick at the time, not with HIV but with other things. But, I'm also in Narcotics Anonymous. I'm very, very open. I'm very open, let's say, in the community on a one-to-one level. As far as information, if I was ever asked to do any kind of presentation, where 110:00I'm at now, I'm, I'm--I feel the need for myself, and also to reach out to, especially, high school children. I'm not involved, other than going to Act Up meetings. I've been in support groups, and a lot of people in recovery, because I am very open and I have dealt with the system and dealt with doctors and hospitals, and Kenny also, with addicts in recovery. That's kind of, sort of how I feel like I reach the public, because there are hundreds of people who, even in recovery, who have stopped using drugs, living with HIV who know nothing about it, nothing. They don't even know where to go to find a doctor. So, like I say, I'm not in any kind of formal organization who goes to a community, but because we make meetings on a daily basis, Narcotics Anonymous is like a 111:00community, and I feel because part of this disease, HIV, is directly related to HIV--I mean, uh, IV drug use, what better place than addicts in recovery? Because there are still many people who, even though they're clean, have been placed in a high risk group, feel that because they were a functional addict at the time they might have been shooting cocaine and heroin, but was able to keep a house, a car and a job, they feel they weren't at high risk because they didn't have many different--They were married or they were single. They just refuse to get tested, they don't want to know. Like, I feel like how I wish the community--I talk openly of the importance of getting tested, early treatment. That's basically what-- 112:00
SEMBER: Do you think it's reasonable to talk about target neighborhoods? Wouldyou say that there are specific neighborhoods in Brooklyn where you think this kind of educational/service activity should be concentrated on, in your experience? Maybe? Or do you think it should be everywhere?
POST: I think it should be equal. I think it should be equally distributed.
WAGNER: Equal, but yet I feel that a lot of (which may sound a bit contrary towhat's being done) White, middle class neighborhoods--There is not very much out. A lot of the outreach has done in minority or drug neighborhoods, because they feel that's where the poor, the "uneducated" or the dregs of society are living, and that's where HIV is. A lot of White, middle class neighborhoods, where it's becoming more out in the open, especially with heterosexuals who 113:00aren't IV drug users or people who aren't gay or lesbian, there's this illusion that if you're in this White, middle class neighborhood, for example like here, Sheepshead Bay, Bensonhurst or I know where my sister lives on Long Island, New York, which is even worse--"How could this reach into our neighborhoods?" People think, well, okay, Bed Stuy, East New York, that's where HIV is, and I find that--Not that it should be concentrated more, but I find that there's a great denial in White, middle class, upper middle class, because even my experience as an addict, even to myself when I was functionable, I even convinced myself that I had my addiction under control. So, I think people with their denial feel that they can control HIV. So, if they have some money and they're White and they're not IV drug users, or their not gay, they can't get this. I know with the circle 114:00of friends my sister lives with on Long Island, I don't think there's any, any--Not in schools there. It's not a poor neighborhood. Not that it should be concentrated more, but I think there's more of a need in middle class neighborhoods. I don't think they've even touched that aspect yet.
SEMBER: Kenny, you spoke earlier, when you were talking about dealing with thehealthcare system, "Let's not make this into an Act Up meeting." You've been going to Act Up meetings for quite some time, have you? You have. Do you call yourself an activist?
POST: Limited, yeah. Yeah. I wouldn't say I was an activist, because I think interms of my friends who are really activists, who are active activists. I tend to go--My sympathies are definitely in that direction. I'm not going to say 115:00anything to incriminate myself on tape.
WAGNER: [laughter] What was the--I keep on going, "What's the question?"
SEMBER: Would you call yourself an activist? Or, are there specific stories thatyou could tell, where you think you were doing which was something that an activist does?
POST: I believe in going to demonstrations. I believe in--
WAGNER: I would definitely call myself--How I think, how I am--definitely anactivist. Like, activism is a way of thinking. It's a way of wanting to change things, how things are done, and being an active participant in it. As far as physically going to demonstrations or doing that, I'm quite capable of a lot of times--Because I know my capabilities and how I am, sometimes I choose not to--I don't want to be arrested again. I can't afford to [laughter] get arrested. I 116:00was on ten years parole and I finished that, I'm doing fine now. But, as far as being a rebel and an activist, like definitely. I consider myself--and I pride myself on that, especially as far as this issue. Even though, maybe uh, and just recently I started becoming more involved, like, in Act Up and being a participating member, rather than just having my sentiments. There was a lot of stuff in my personal life that I kind of had to get rid of first.
SEMBER: One of the things that I've noticed in doing this work is that a lot ofstuff gets concentrated in Manhattan, and there are lots of service organizations in Brooklyn, but even then a lot of people go into Manhattan for their [unintelligible].
WAGNER: There's nothing here.117:00
SEMBER: Yeah, there's very little here. But, also, it seems that one thing thereis definitely nothing of (and I might be quite wrong on this) is activism. Act Up demonstrations happen in Manhattan, that kind of, that kind of--
POST: It's not just that. You have to take into consideration also that thesedemonstrations, that these aren't acts of rebellion. We're not a bunch of school kids going out and blowing up the establishment. It's not about that anymore. What it is about is making people aware of what's going on within the system and what's going on in other people's lives that are around them. Medical costs, availability of medicines to certain people--these are things that we want people to be aware of and what's going on. They have a guy standing up there saying to you, "Well, listen, we have this medication, it's available to the public but we're not going to give it to you because we want to charge $25,000 118:00per month for it, and the truth of the matter is, when you start going blind you're going to pay $25,000 a month for it. We know this and you know this, so there isn't any point in discussing it anymore." This is the type of attitude we want changed. We don't want people to think these things can continue to go on. We don't want people like George Bush standing up there saying he's paying so much attention and he's doing all these great things for people who are sick, and he's not. He's not even giving good lip service to it anymore. We want people--We don't want figureheads and we don't want things like the Federal AIDS Commission, people who are sitting up there getting $150,000 a year to sit on a commission and not do anything, not even talk about it anymore. When we talk 119:00about activist here, we're not talking about rebellion. We're just talking about making things right, human--humane.
WAGNER: Can I elaborate a little? What I was going to say was--
POST: No. [laughter]
WAGNER: Like you pointed up before, a lot of this goes on in Manhattan. It'squite true. I know from experience of some friends and what a small group of us, who have been going to Act Up meetings in Manhattan, we're trying to formulate--Like, last night we had a meeting here in my house--We're trying to formulate more of an activist awareness in Brooklyn, because like you say, there just is none. Do you know what I mean? Over the last six weeks, after a friend of ours was sent to Amsterdam for the conference to represent minorities and IV drug users living with AIDS, he came back. It was our first meeting to make 120:00people either in recovery or in Brooklyn (basically in recovery, because most of us are clean now and really don't want too many people using at these meetings), but, whether you're infected or affected, to become aware. The first meeting, about eight people showed up. Our doctor was willing to come and give a presentation. He thinks it's a wonderful idea. We had another doctor, who's a pediatrician at St. Vincent's, last Sunday come and give a presentation, to try (when you talk activism), to try and get, even on an individual level, people. To empower them a little bit; more aware of their blood status, how to read their blood work, treatment and trials, that are out for us. By last night we had--Six people didn't show up. What I find in Brooklyn is--
POST: But six people did show up.
WAGNER: Six people did, and we're continuing to meet. But, in Brooklyn itself,121:00as of now, other than what we're doing, there's basically nothing around this area. Another girlfriend of mine, who works for Life Force: For the last two weeks they've been trying to have a support group in Coney Island. It's on Tuesday evenings and for three weeks--It's her and another woman who work for Life Force. They go there religiously, 6:00 Tuesday evenings. The first week, the director of the program from the clinic there showed up because he instituted it, for the last three weeks they've sat there by themselves. So, I feel like in Brooklyn, if it's not from a few who believe it in their hearts, like I say, it's all in Manhattan now.
POST: There's people in Brooklyn who are doing a lot of good work with it. TheBrooklyn AIDS Task Force down on Chapel Street, fantastic. They've opened up outreach centers throughout the thing. They're very limited financially, and 122:00with people who are willing to go out into the different areas and work with other people. Also, Brooklyn's home. You also have to keep this in mind. Brooklyn is home. When I go to Manhattan and I'm with my friends over there, I'm a face in the crowd. Here, I'm home. I have neighbors, I have a job, and I'm not so willing to put my name and my face out in the street in association with the AIDS virus, because there is a stigma attached to it, no matter how noble I may want to sound with it. These people are still gonna look at me like I'm a piece of shit once they find out this is what's going on with me. So, it's much easier for me to get into my little car and drive over to Manhattan where I have no face, where I might have a name--a first name--and my identity is my own because I still have home to come back to, which is completely separate from where I'm associating myself with this virus, which is also very important, in dealing 123:00with this virus. We have our own idealism, what we'd like to do with it, but then we have the reality and the reality is you're not going to walk around the goddamned streets with a T-shirt that says, "I have AIDS" on your back.
WAGNER: I wear my Act Up T-shirt all over. I do. [laughter] I do.
SEMBER: I think that's an excellent point.
SEMBER: Yeah. I mean, if we can play, began just to assume (I have fourquestions left.), assume the activist role for a short while. You mentioned earlier, you said--I can't remember exactly but--You know the people who hold the purse strings aren't going to do anything, and until it hits them in their own backyard--What do you think that organizations with power--city government, 124:00state, federal institutions--what do you think that they should be doing that they're not doing?
POST: There's so many--That's such a broad subject, to start with. You know, theAZT; AZT was invented. The scientist who invented it was employed by the federal government. They took the patent for the AZT and they sold it to a private pharmaceutical company who, therefore, started to invest umpteen million dollars into doing it. It turned out that when this thing came out on the market, the cost for the everyday person was something like $1,200 a month, which, if the government had initially kept it the sales would have been something like $1.50/$2.00 a month. A month, you follow me? What the government should be doing with these type of things is just, kind of, helping people, that's all. No big 125:00thing. Nobody's looking for big handouts or a thing like that. Just helping people; helping people to help themselves with it; having things made available to people, putting some of the money that's already being designated by the federal government and the state down into the city level, putting some of this money into the hands of the people who are actually doing things, Life Force, which she was talking about. Different institutions (I don't want to come out too strong for any one thing), and take it out of these goddamned idiot administrators. We're having people who are being paid over $80,000 a year by the City of New York and their sole function is to dilute these funds and put them into other people's hands. A great percentage of these funds are being put into their pockets as salary for doing this. How many people are making money 126:00off of this thing, in comparison to how many people are actually getting benefits from it? We look under this, under scrutiny: Everybody has their finger in the pie. The Medicaid system: Just take a look at the drugstores with the Medicaid system. How many prescriptions have gone into drugstores with five refills on it, and the patient has only gotten one refill on it but the drugstore has gotten paid for five of them. So, Medicaid costs have gone up for that, and it's not the people who are abusing them--which is what's going out now, in the different places--it's the pharmacies themselves who do it. The whole thing is crazy with this thing; anything that causes people pain, supply and demand. It's like, well, "We'll make a buck off this one right now." I'd like to see that stopped.
WAGNER: What was the question?127:00
POST: We want to change the whole system.
WAGNER: What was the question, again?
SEMBER: What should city, state, federal organizations--what is theirresponsibility? What should they be doing that they're not doing now?
WAGNER: That they're not doing? I don't know if it's what they're not doing, Ithink it's how they're going about doing it. I know I would like to see, as far as a woman living with this, that, just from a lot of reading I've been doing, as far as clinical trials, clinical studies, women are not allowed on them, a lot are refused, a lot of them are criteria that you must be sterile to be even considered to go on a clinical trial for drugs that aren't approved yet, which, when I've been reading a few of these, I go nuts. Because, if that's a 128:00criteria--First of all, I think, well, that whole issue of having to be sterile or making that choice in order to go on a clinical trial, to find out if something can save your life, is like a horrible basis for anything. Also, I think, as far as the funding, I know as a mother of a child, I would like to see where I can try to raise my son, living with HIV and having to depend on the system, where I can be able to afford to feed him, clothe him, and not be looked at as though I want to live on welfare, because if I had a choice--I'm not given any other choices, with the medications and the hospital's tests that I have, there's no way that I could ever work, which I would love to work, and to be able to afford to feed myself, take care of a family, clothe a kid and pay for 129:00all of this. As far as, as far as even outreach, in certain communities, I just--You know, where the system is concerned is a person living with HIV has to go through so many changes to get what they need--not what they want--because I'm already living in my life, I just have to fight on a daily basis to get DAS to even pay for this apartment. It was up until the day--We had to cancel the moving trucks to come a day later because DAS said, "Well, you know, it's going to take two months to get that approved." In the meantime, we had to leave our other apartment. Here's a family living with HIV. Not only the fear of living with HIV itself, but the fear of: How are you gonna--I had a fear of being out 130:00on the street, because I couldn't go and work, because if I went and worked, I don't have insurance to pay for the hospital to pay for the medicine to pay for the food and my kid. So, I don't know if things needed to be added, things need to be taken away, or just the whole change in everything.
SEMBER: I'll ask two questions, just on the side, very quickly: Have you everbeen afraid that your son might somehow become infected?
WAGNER: I hoped you weren't gonna touch--
SEMBER: You don't want to touch that?
WAGNER: No, no, it's all right. I just get real emotional with it. As far asnow, with the knowledge that we both have, the fear of him getting infected from us, I have none. My greatest fear of having a son and living with HIV is that: 131:00Who's going to be there for him? If I don't live X amount of years, where's he going to go? He has no brothers and sisters, my mother's in Florida, she has cancer. It's not so much getting infected that is my fear with my kid; it's how it's affected him, on a whole total. So, even though he's not so much infected physically, I believe that because he lives with two parents who have it, he is, in a roundabout way, infected, even though he's not dealing with physical symptoms of AIDS. But, I have had him tested twice, which was a horrible decision to make.
SEMBER: Did he know that he was being tested?
WAGNER: No, but he did ask me, after we told him we both had the HIV virus, he132:00got afraid for us and he got afraid, terrified, for himself. I told him--and there was, somewhat, in that whole evening that we told him--some sort of relief--that I told him he was tested twice, and he's negative.
SEMBER: Have you seen any positive effects of AIDS? I know that seems like asilly question. [laughter] One of the things is that, for some people, for some IV drug-using people, it has helped them come clean. That's one thing I've heard. This has kind of been a shock, and for some people--
SEMBER: --it's changed.
POST: I wouldn't give anybody that impression.
WAGNER: Yes, but, for myself there's been--As far as comparing it with drug use,definitely not. 133:00
POST: That in itself isn't a motive.
WAGNER: That decision, as far as coming clean, had nothing to do with HIV, and Iknow if I ever make the decision to use again, or not to use, my decision, on a daily basis, not to use entails more than HIV. It's more in a sense of self-worth and what I have to lose--meaning, myself--not just the fear of, like, I have AIDS and I can't use again. But, I know, with--I know it's made me, even though on a daily basis I go around and I say, "I hate this virus" because it causes so much pain--I'm not even talking about the physical aspect of it. It's made me appreciate a lot of things a lot sooner, and made me realize how some stuff just isn't so important; what I used to think of as so important that I 134:00used to get nuts about, daily little things--if the wash didn't get--Stupid things that I would obsess about, which I still do somewhat, but because of living with this-- Like, I always joke around, I say, I'm not willing to lose any T-cells over these things--waiting in line in Waldbaum's or, if these bills aren't paid on time. These are things that, before AIDS, I used to really worry about that seem so important in life, which it is, to pay your bills, to go shopping. But it's made me kind of appreciate the value of life and what's really important, you know, rather than all these outside things. Because, I could have a million dollars now, all the bills paid, beautiful clothes, and a fancy car, and it's still not going to take away the pain of living with HIV. So, it's kind of made me realize that, even though I'm a slave to the system and 135:00DAS, all that stuff really isn't--in the big scheme of things. When you're born and when you die, you don't go out with your Cadillac. [laughter]
SEMBER: What are your hopes for the future? What do you think is going to happenin the next few years?
WAGNER: I'm being sarcastic, I'm going, "What future? What future?" [laughter]
POST: One of the things that's happened; I wouldn't say anything was positiveabout it at all, but one of the things I've seen happening is it does break down barriers. [Interview interrupted.] It's not a drug issue, you know. It's definitely, it's a people issue. It's not affecting one person and not affecting somebody else. People are becoming acutely aware of how that ignorance has 136:00affected them because, for many years, AIDS, well, who's doing anything about it? "Well, it's those faggots in Manhattan," you know and nobody, nobody--that was it. It was written off. "We'll let them take care of it, it's their problem." That was the predominant attitude, throughout anywhere you went with it. That was ten years ago. Now, you turn around, you look at it, and you say to yourself, "Well, who's doing anything about it? It's the Gay Men's Health Crisis." They're not "those dumb faggots" anymore, and even when I went there (and it was when this whole attitude was coming under transition), I went there with the impression that, here I was, I was going to go into a gay men's club. It was a storefront, and maybe I'd find a pool table in the corner and a little 137:00wooden desk. This was my idea, on the train, going there. I went there and I found a six-story building (luxurious, I might add), with a gym and everything else, and these guys were really taking care of business. They had a financial section, a legal section, and when they said they were there to help you, they were there to help you. They weren't looking at me. Nobody asked me what--As a matter of fact, I had been there a few months before anybody asked me what my sexual preference was, and that was only because the guy was cutting my hair (He was the barber.). Yeah, he was definitely an intimidating guy too.
WAGNER: [unintelligible] Kenny. I'm laughing.
POST: Huh? But it's true, and that's the one area that's coming out of this, that's--
WAGNER: [unintelligible] cut hair there. A girlfriend of ours, who passed away,Stacey used to cut people's hair there.
SEMBER: What do you think is going to happen in the next few years? What do you138:00hope? What do you dream for?
WAGNER: What will happen? What do I dream or hope for? A cure and a vaccine.Like the bottom line, that's what I hope, that's what I don't--I don't know if that'll come in my time. Then again, maybe it will. I kind of, more on the realistic level--Because I think anybody living with it, that's really they're hope--"Cure me, fix me, get me well, I don't like this anymore." But, my kind of hopes with this, you know, is that people get a bit more human. Because, see, now that it's becoming more in the open, it's like I'm finding that even like a lot of the Act Up meetings we go to, with people really wanting to do stuff, 139:00sometimes I sit there and I feel like I'm talking about something else and somebody else because it's becoming such an issue that I forget at times to humanize it, even when I talk on a one-to-one with friends, about making living wills. Somebody was asking me that, and we had done that, and giving power of attorney; if I pass away where I want to be buried, where my estate should go and all of this. Sometimes when I talk, I would like to see that it becomes on a more compassionate level, because it's not only a physical disease. It has a life of its own in a way. It's nothing like I've ever seen before. So, that's what I would like to see happen; that not only, as we make people aware that we 140:00don't forget that it's human beings and families and children and babies and grandmothers and parents and losses--like, there's a whole other side than the physical--and better care in the hospitals. I mean, or maybe--I know when my girlfriend was just in the hospital, in St. Vincent's, every floor of the hospital, that's all they're dealing with now, basically. They're so overwhelmed with AIDS patients that they don't even know what to do anymore. They don't know what treatments are good, what treatments are bad, what will work for that. So, I'm kind of hoping to see a little bit, other than a cure and vaccines, just something on a more human level. More care for families dealing with this. Even 141:00outreach in homes, because right now, people--families--living with HIV, all they have for help to rely on is the welfare system and home attendants. There's been horror shows. My DAS counselor has offered (and both of us go like this), because I know friends of mine who have passed away had horrible experiences. So, as far as even like--Things of simple, day-to-day life, when people get sick, who walks their dogs? Who feeds theirs cats? Who takes their children to the park? Families can't just rely on parents or sisters. My mother lives in Florida, my brother's in Ohio, the other one's on Long Island, so these simple things, other than just relying on the system--That's what I would like to see in the communities. 142:00
SEMBER: Last question. Some people are going to be coming to this exhibition,and they're going to be listening to the things that you're saying. Is there something in particular that you, from your experiences, would like to really be able to tell people? Is there something, a particular message, that you think is the most important one that you could give to people who are coming to an exhibition about AIDS?
POST: Jesus, this is my chance to be profound, too. Shit. Nah. Just becompassionate. That's all. Just for people to be compassionate, and not just with AIDS but with everything. Just be compassionate with people.
WAGNER: The first thing that came to my mind is we need help, and we need a lot143:00of help. I kind of would just like to say; I know, myself living with AIDS, I feel I need people to lean on, and not to feel shame in that. I think maybe by doing this, and the awareness that everybody has something to give, there's a part that everybody can play with helping people, whether it's information, whether it's outreach, or, like I said before, caring for children, walking people's dogs. I think people living with this virus need a lot of help in every aspect, and I think what stops people living with it reaching out and saying 144:00they need help is the stigma, the shame, so they hide. I believe that's causing a lot more damage than the disease itself.
SEMBER: Thank you very much.
Oral History Interview with Kenny Post and Cheryl Wagner
Cheryl Wagner and Kenny Post, both White and Brooklynites by birth, had married four years before this 1992 interview. They met at a Narcotics Anonymous social shortly after they had begun rehabilitation programs for IV drug users. At the time of their meeting, Post already knew he was HIV positive. Wagner was tested a year or two later and discovered that she too was positive. They had both experienced AIDS related illnesses. Post worked as a cab driver, identified as an activist and attended AIDS Coalition to Unleash Power (ACT UP) meetings. Wagner had participated in a variety of AIDS support/activist groups. They were both using Gay Men's Health Crisis resources. Her fifteen year old son was living with the couple in a home in the Sheepshead Bay neighborhood of Brooklyn in 1992. Before their marriage and AIDS, both Wagner's and Post's lives revolved around drug use.
In the interview, Kenny Post and Cheryl Wagner share strong opinions about the particular issues that HIV raises for addicts and are critical of many of the programs established for this population. In addition, Wagner is concerned about AIDS as a woman's issue and presents numerous examples, many of them personal, of the ignorance and discrimination faced by women with AIDS. They both are incisively critical of the healthcare and welfare system in New York City and the inadequate and unequal distribution of resources across the boroughs. Finally, they are people with AIDS who are involved in an intimate and caring relationship and their discussion of this aspect of their lives provides a particular perspective on the emotional impact of the AIDS crisis in the twentieth century. Interview conducted by Robert Sember.
The AIDS/Brooklyn Oral History Project collection includes oral histories conducted for an exhibition undertaken by the Brooklyn Historical Society in 1993. The project attempted to document the impact of the AIDS epidemic on Brooklyn communities. Recordings initially made on magnetic tape concerned the epidemic and were with narrators who had firsthand experience with the crisis in their communities, families and personal life. Narrators came from diverse backgrounds within Brookyn and the New York metropolitan area and had unique experiences which connected them with HIV/AIDS. Substantive topics of hemophilia, sexual behavior, substance abuse, medical practice, social work, homelessness, activism, childhood, relationships and parenting run through at least one, and often several, of the oral histories in the collection.
CitationPost, Kenny and Cheryl Wagner , Oral history interview conducted by Robert Sember, September 26, 1992, AIDS/Brooklyn Oral History Project collection, 1993.001.15; Brooklyn Historical Society.
- ACT UP New York (Organization)
- Gay Men's Health Crisis, Inc.
- New York (N.Y.). Department of Social Services
- Post, Kenny
- Wagner, Cheryl
- AIDS (Disease)
- AIDS activists
- Drug addiction
- HIV-positive persons
- Self-help groups
- Sexual health
- Social group work
- Stigma (Social psychology)
- Women's health services
- Brooklyn (New York, N.Y.)
- New York (N.Y.)
- Sheepshead Bay (New York, N.Y.)
- Williamsburg (New York, N.Y.)
Finding AidAIDS/Brooklyn Oral History Project collection