Oral histories are intimate conversations between and among people who have generously agreed to share these recordings with BHS’s archives and researchers. Please listen in the spirit with which these were shared. BHS abides by the General Principles & Best Practices for Oral History as agreed upon by the Oral History Association and expects that use of this material will be done with respect for these professional ethics.
Every oral history relies on the memories, views, and opinions of the narrator. Because of the personal nature of oral history, listeners may find some viewpoints or language of the recorded participants to be objectionable. In keeping with its mission of preservation and unfettered access whenever possible, BHS presents these views as recorded.
The audio recording should be considered the primary source for each interview. Where provided, transcripts created prior to 2008 or commissioned by a third party other than BHS, serve as a guide to the interview and are not considered verbatim. More recent transcripts commissioned by BHS are nearly verbatim copies of the recorded interview, and as such may contain the natural false starts, verbal stumbles, misspeaks, and repetitions that are common in conversation. The decision for their inclusion was made because BHS gives primacy to the audible voice and also because some researchers do find useful information in these verbal patterns. Unless these verbal patterns are germane to your scholarly work, when quoting from this material researchers are encouraged to correct the grammar and make other modifications maintaining the flavor of the narrator’s speech while editing the material for the standards of print.
All citations must be attributed to Brooklyn Historical Society:
[Last name, First name], Oral history interview conducted by [Interviewer’s First name Last name], [Month DD, YYYY], [Title of Collection], [Call #]; Brooklyn Historical Society.
These interviews are made available for research purposes only. For more information about other kinds of usage and permissions, see BHS’s rights and reproductions policy.
William Sandoval with Rita Rodriguez
Oral history interview conducted by Robert Sember
June 11, 1992
Call number: 1993.001.18
[This interview was transcribed from a videotape source in 1992. The first 400+words of interview transcript represent content that was not transferred from video to audiotape.]
SANDOVAL: If you feel uncomfortable about it, there's nothing I can do. I'm notgoing to waste my time, I'm not going to be after you, try and convince you. I'm not going to lose any sleep over it. I just, as I mentioned before, I just want respect. You know? Don't mistreat me because of what I have, I have AIDS. I mean, that's even worse than having [unintelligible], it's a damn disease. And that's not only me speaking, I spoke to other people. They said, "It hurts, man, it really hurts." I live with something that. I mentioned it on occasions like this, I just want you to know how deep this thing goes. In '81, I heard about something very strange called AIDS, and it was White males up in Greenwich Village. So I was thinking, I was talking to a friend of mine, and I said, "What the hell are these crazy White guys up to now, uptown, again?" Little did I know that I was probably carrying that virus. We didn't know people that know AIDS. So anyway, a friend of mine got very ill. IV drug user; he would shoot cocaine every once in a while. And this guy just started breaking down, and the word "AIDS" came up. People were telling me, "I don't know man, I heard if you go into a room, and you breathe the air, and you get AIDS," and you know that we didn't go see him. He died alone because I thought that I would get disease by being in the same room. He asked for me. "I know I'm going to die, let me see my friends." We didn't go. We didn't know. We were friends since we were kids. I'm talking about kids. I'm talking about running down the block and snatching a thing off the fruit stand. You know, kids. We were kids. We wasn't men. We were still school kids. And I have to live with that.
SEMBER: You know what's real interesting about what you've been saying, is thatyou're not just a person who has AIDS, but you are friends with people who have AIDS, you are part of the church, a support group, also an educator, maybe not intentionally.
SANDOVAL: I have been to schools. Yeah, right.
SEMBER: What are all of the ways in which you are involved with AIDS, and havebecome involved with AIDS?
SANDOVAL: It wasn't always like that. [Audio commences here.] When I gotdiagnosed, I got hospitalized for a psychiatric problem. I just couldn't fucking take it. "I can't, I can't, it doesn't happen to me." For some reason or another, AIDS seemed so out of--not nothing, but I told someone and he got hysterical, he was saying, "Oh, you're a funny guy." I said, "I'm very serious." AIDS seemed so out of place in South Brooklyn. It happens to White people. This was my mentality years ago, way up there. It just seemed so out of place over here. It's not supposed to hit us, it's not supposed to affect us down here. As you can see, AIDS is everyone and everywhere. It's not that it's a gay thing or anything, it's a disease that's really overtaken the young men and women in America. Especially in New York. So many of my friends died, it's unbelievable 1:00how the crowd is like, gone. Not too long ago, a couple of days ago, we lost another one, Brenda, at the Lutheran Medical Center. Five year old, she left a five year old behind. Things like that. But the fact is, after I'd gone through my mourning period, I decided, and this didn't come by my own free--there were other people who took me, a couple of these crazy guys from ACT UP, I'll always be grateful for it, they said, "Bah, blah, blah." Before you know it, I wound up in ACT UP and GMHC and this, and I realized that people die when they dwell on it too much. Maybe you will yourself to die early when you have HIV. I know that I started thinking the complete opposite, life. And it didn't happen overnight, 2:00and it didn't happen reading any book that you can buy in any stores, like, what do you call it? Helen Hayes and shit like that. That's not the way it happened with me. It happened very very gradually. It happened with contact with other people, people who were sincere. I'll always be grateful to the GMHC. My family, number one, because without them I wouldn't have been able to survive. They've always been supportive of me, and things like that. Like I said, it didn't happen overnight. "Wow, I'm beginning to see the light." I went through a very traumatic time in my life. One of the things up front was suicide. I actually made the attempt and I almost made it. And so, it wasn't easy, the conversion from being a person in good health to a person with HIV, with AIDS, wasn't, you know, was a pretty rough ride. 3:00
SEMBER: What was your life like, before?
SANDOVAL: Well, before I was your--I used a lot of cocaine. I got caught in acocaine craze. I always had my job and my family, "Hey, how are you doing, guys?" with the guys, hanging out with the guys. One of the typical guys, man. Nothing special about me, you know. Another face in the crowd, another working Joe in South Brooklyn, where I live and where I plan to die. So I got caught in this cocaine craze, and a few times the injections pass by, right? I mean, AIDS happened to these drug addicts, it doesn't happen to me. Come on, what's the big deal? What's the big deal? I'm going to die if they don't come up with a cure. I'm gonna try to put another four years on, but the truth is things are 4:00happening to me.
SEMBER: Were you born in Brooklyn?
SANDOVAL: Yeah. I lived in New Haven, I lived in Florida. I lived--I always comeback. There's something magical, there's no place in the world like this place here, like Brooklyn. There's something very magical about it.
SEMBER: And particularly South Brooklyn?
SANDOVAL: South Brooklyn. The other side, East [unintelligible], I don't caretoo much for, but these neighborhoods have something special about them. My parents came here in the forties, they came here at a time when, I remember when I was a kid, they would still sell vegetables off the horse and cart, and the iceman would come and people with these trucks would come and they would grind your knives, things like that. That kind of neighborhood that I grew up in, where I guess, as I was growing up I've never heard of anyone getting robbed in 5:00my neighborhood. Never. I didn't know anyone who got robbed. The pushers didn't get robbed. It was a good place to grow up. I grew up--I mean, when we were teenagers, I mentioned it, we hit all the fruit stores. But you know, I don't know what happened.
SEMBER: What does a kid who grows up in that sort of environment want to do withhis life?
SANDOVAL: First of all, all of us wanted to be ball players. That's number one,this was one of the greatest pastimes. We all had our--every kid was in a gang at that time. I'm not talking about, like the ones now, they're running around with, but you know, you had your block, you had the Sackett Street Boys, you had the Vikings of DeGraw Street, and we played stickball, but the aspiring thing 6:00was--I mean, people in that neighborhood at that time weren't brainier, more than people with doctors and things like that. They were longshoremen, truckers, and usually that's what the kid did. They went to work with their fathers. I don't know why, but these are things that usually happened in this neighborhood. It just so happened I came from a neighborhood that was close to the piers, and there were a lot of longshoremen, so naturally you know--I'll never forget when I was a kid, I was terrified of longshoreman because they would walk up the block with these hooks, and somewhere in my mind I thought they were going to hook me or something and I would run. I was very aware of the time that they would come out. I would take off like a bullet and go home. But this is the kind of neighborhood it was. I don't remember my friends saying they were going to be doctors. You went to work with your Dad. 7:00
SEMBER: Is that what you did?
SANDOVAL: No. My father and I are not friends. Today he would have been probablythrown in jail for the way he treated us, the things he did to us, the way he hit us. So I never wanted to have anything to do with him. My father was a factory worker, and he worked in this place like 35 years, 30 years, never really made any money, he threw his life away. He didn't really try to divert or anything, but no, I never wanted to be like--Matter of fact, now that you mention that [unintelligible] I'll never forget. There were a crowd of us, and we were talking, you know, kids, we would go to a certain stoop where no one 8:00could hear us. There was a lady that lived on the second floor but she was deaf, and we would talk freely, the kids, the boys. And I found out that my friends, their fathers didn't beat their mothers or them, and I was shocked. I thought they were kidding me. They said, "No, my father never hits her." I asked them, "Why?" They said, "I don't know why." I thought that everybody, every, families, that the man was supposed to beat everybody up to keep them in line. I really believed that for a lot of years, I didn't believe, I just couldn't conceive that men didn't beat up women. Or that you wouldn't do this on the weekend, when you got drunk and beat your kids. There was something wrong there, they were supposed to get beat up. So you can see the extent of the relationship with my father. That's why I always say, it was a great place to grow up. It's like, 9:00AIDS seems to out of place here. Manhattan's a liberal, liberal city, people from all over, where obviously people there are more open-minded to things, and usually Manhattan is the forerunner, not only in trendsetting but in a whole lot of other things. And Brooklyn is always like this for [unintelligible] a very quiet place, ethnic strongholds, you can see, and when AIDS enters they say, "Wait a minute, you don't belong here. You don't belong in South Brooklyn." I don't mean it in a cruel way, but "Go back to uptown, this is a chic disease." But it is, it's here. I mean, we're not immune to it.
SEMBER: The lifestyle that you were living, before--
SANDOVAL: Yeah, promiscuous.
SEMBER: Talk about that a bit. What do you mean by promiscuous? Was it a chic10:00Manhattan lifestyle?
SANDOVAL: No, it was more like, first of all, I've never been a womanizer, likethat. For the better part of my life I was like married, and things like that. But you know, guys, it's a chauvinistic things that we as Latinos grew up with. It happens every once in a while, we use unprotected sex. That's what I should have said. But there was really no reason to use--I caught my dose of syphilis and gonorrhea, and you know, you go in, you get zapped, and I didn't think of having sex like that, unprotected sex, that I'm going to pay for it with my life, and I still think it's not fair. I mean, we shouldn't pay for--regardless of what your preference is, I told one person, "I'm not gay, but who the hell 11:00gave the heteros the exclusive right to sex?" We shouldn't pay for having sex with our lives. And so, it was kind of like, a little more, I'll have to get me down to a VD clinic, and the sharing of works. So, I don't think, like a lot of people say, "Well, you left yourself open," and maybe in a sense I left myself open for syphilis, but I didn't leave myself open for death. I don't deserve, nobody--I don't care what anybody says, no one deserves AIDS. We didn't do anything wrong to deserve it. Some people say, "Well, that's a matter of opinion, these guys that go to bed with this other." So fucking what? So fucking what? You're going to electrocute the guy, man? Come on. Sometimes I have to put 12:00up with so much shit, it's amazing what people will come out and say. I thought I was losing with ignorance at one time, but man, I've heard some statement that would blow you over. Earlier on, some of the churches, they came after us, man. Even before I found out that I got ill, the ones earlier on? Poor guys, the church was after them, like "I told you. I condemn you. That came from God." God is not going to be so cruel as to put AIDS on this earth. Where it came from, I don't know. But it didn't come from God. That's for sure. That I know. We have a loving God, not a cruel God. He's not going to make us suffer like that.
SEMBER: So you were--You were using cocaine?13:00
SANDOVAL: Mainly. I would use heroin mixture, but mainly cocaine. I got caughtin that craze.
SEMBER: How would you use it?
SANDOVAL: Well, when I first started using cocaine it was the sniffing. I smokedit, before you knew it I was shooting it, because like anything else, you become--you get an immunity to it, you want a stronger high. After a while, sex didn't seem to matter, my job went down the tubes, everything. Everything went down the tubes. Cocaine really--and then AIDS entered. Enter AIDS. It's like this monster with these big bloody teeth came. That's what I see, it just came into our lives and did a sweep, and half the people I know are dead, just dead.
SEMBER: When did you find out that you were HIV positive?
SANDOVAL: I found out in July, '88. A while back. But I suspect, when I found14:00out that it was in the community, in the addict community, I said to myself, "My God, we're dead." I said, "We are dead." We didn't know it was being spread like that. We kept on. You hear, "White, gay male, sex with 'em, tearing of the skin." You rarely heard things about--and when we realized it, we got caught with our pants down, or so to speak. Shit. It was already here. That's why it hit the addict community at such a rapid-- it's not like it just got there. It was laying dormant; boom, just exploded. I'm one of them. I got caught.
SEMBER: What made you think? What made you suspect that you had it?15:00
SANDOVAL: That I had AIDS? People that I know, that I had shared the works withon occasion. You know, Robby, you're not going to believe this, I always thought that if I shared works a couple of hundred times I'm more susceptible to AIDS. Now every once in a while, once, I'm not. I, I believed that. [unintelligible] No, this is what I believed. And a lot of people got caught into that, I guess.
SEMBER: What about the sex? You were hearing about a few cases of AIDS, and thatgay men were getting it because they were having anal intercourse, and you were having sex with a number of people, and you were shooting up. How did you--what did you know about transmission?
SANDOVAL: They said it's not easy for a man to get it from a woman. Rememberearlier on? "Women don't get AIDS," that's another popular one. You believe this 16:00and you keep on frolicking and shooting drugs and having unprotected sex, right? You don't know. All you hear--I think the reporting, early on in AIDS, it's like a shame--a shame on journalism. They did such a terrible job of portraying it. First of all, they went after certain people, and after they finished ripping them apart, they went after someone else. And the information that was being given was so fucking fucked up and such bullshit, that it actually probably caused so many people actually to get--to become infected. I think journalists have an obligation to the public of honesty. The complete opposite happened. I blame a lot of journalists for the explosion of the AIDS epidemic; for beholding this and for not doing their homework and of course, a lot of people didn't know 17:00enough about it, but don't report something you're not fucking sure of. Like me, they say, "The men and the women--" I--forget it, I went nuts; I'm safe, I'm safe. Even though, that wouldn't have made a difference, probably, because I was still using drugs. But what I'm trying to say is that, it's what happened early on, I'm still shell-shocked after so many years. A lot of people say, "Well, you must be used to it." I'm not used to having AIDS. I'm still shocked. I wake up every morning and I've got to look at these medications, and I have to realize that one day I'm not going to wake up, that I'm going to be taken away from my family. That when I go into the hospital I'm not getting out. In a body bag, that's the reality. There's not one day that doesn't--one day that I don't feel ill. I haven't felt healthy in--since--I forgot what the hell it is to be 18:00healthy. I had a dream--so did Martin Luther King--but I had a dream not too long ago, I was sharing it with my sister, I was in a park, but I was standing watching me. But in this park I was lying down in the grass. There was this dog, with fluffy ears, a dog that a kid would really like, to love, to have. So the dog was barking. It was trying to lick me. I know that I loved this dog a lot. In the dream, I'd probably had the dog for awhile. The dog meant so much to me. I really loved the dog, and the dog, I know, really loved me. He was all over me. And I got up, and when I got up, my body wasn't-- I was originally 215. I felt healthy in that dream, the breathing was good. I felt strong. And I will 19:00never forget; I had this red running Puma outfit, remember the one? I wore it a lot. People said, "What, do you have a dozen of them?" Because it was so comfortable. And I felt very healthy. And that's the first time in a couple of years that I felt really healthy. And it was in a dream. I don't know where this dog came from, but it was there. But at least, in that dream, at least for a little while, I loved that dog a lot. I remember I really felt for that dog. And I felt healthy.
SEMBER: When you woke up, what did you feel?
SANDOVAL: I was elated. I had a good feeling, because for once I felt a littlehealthy, not sick. I get up in the morning, I'm still pretty much weakened, a 20:00lot of vomiting, I'm nauseated all the time, I get fevers a lot. I get cold, not chills. I get cold. On nice days I have a put a lot of clothes on. I can't really go out alone, because I've been known to get sick. So AIDS is, I'm constantly reminded. But then there's people, most of the people that I associate with now are not people that I knew, they're people that I met at GMHC, at ACT UP. And I feel good when I'm around them, I feel like we're actually--nothing is going--we're going to keep fighting.
SEMBER: Then you have some power?
SANDOVAL: Yeah, from the people who are positive. I can't--You know I do a lotof [unintelligible], I don't do that anymore. Let me rephrase that. I would go 21:00into schools and things that like. Community groups. I don't do it anymore, but people reached out for me and I like to reach out to other people, and I never associated with people who were gays, at one time. There were gays, there were spics, there were chinks, the whole thing. And this is the first time in my life when I really started, I really started--It brought me to a lot of awareness. Not only about myself but to a lot of other people. And I don't know, I wish, I know that if a cure comes up I'll be a much better person, a much more useful and productive person. It's wishful thinking, sometimes.
SEMBER: It's hard, this fight.22:00
SANDOVAL: No, I keep on. I don't lose, but comes times, too, when I get veryill. Right now, my diagnosis is CMV, I have the MAl Anemia, the constant diarrhea, the waste thing, so--
SEMBER: How's your T Cell count?
SANDOVAL: None. Donut. Donut T Cell. In November there were 13. And recentlythere was nothing. They say, "Are you worried about the T Cells?" More about the white blood count than the p24 antigen.
SEMBER: What is it?
SANDOVAL: They're pretty low, but, I pop, I pop vitamin C, I take my vitamins, I23:00try to eat regular, if possible. I try to eat--I went onto this very futile, this thing, I did pretty good, I can say, for the health food, no sugar, I went nuts, man. Give me a damn Pepsi, and I'll take a Big Mac. A friend of mine told me, "Don't go crazy with that. Every once in a while, indulge. You're not going to keel over. Indulge. You can't go on this streak." Don't deny yourself. Certain things, but you kind of control it all.
SEMBER: Do you have a story you've told yourself about how you think you wereinfected? It seems as though there were two possibilities, one is that it was from sharing needles, or somehow you got is from intercourse.
SANDOVAL: How do I feel?
SEMBER: How do you think you actually contracted it?
SANDOVAL: It really doesn't make a difference to me now, how I got it. But I24:00think I got it through--[Interview interrupted.] I think I got it through--I'm pretty sure I got it through IV drugs. Also, some of the women I've been with went out with other addicts, so--One, one of them, said, well, she was positive, she said, "You could have given it to me." I said, "Vice versa."
SEMBER: How would this happen? What would be a typical activity that you wouldbe engaging in at that time? Would you be doing drugs and then you would have sex?
SANDOVAL: Well basically, it was more sex than drugs at one time, you know? It25:00was, you get a few blows of coke and the truth is, it didn't matter who the person was. It didn't matter to me, anyway. I never thought about using a condom, or, "I'm spreading a disease, or she may be spreading a disease." What was the question again?
SEMBER: What would you be doing? What would be the activities?
SANDOVAL: Had I not been HIV now? At that time? Well, probably using cocaine.And mainly, like I mentioned before, it got to a point that it wasn't about sex anymore, it was just getting high. So more than likely I would have been probably using cocaine. I hear--I don't buy this, but I've heard people say, 26:00"I'm glad, because AIDS brought me to this." You know, I look at it, I would like to say, "Hey, buddy, you know what? You know what we say to someone in Brooklyn? You're full of shit." I'm not glad nowhere, but it has caused me to think certain things now. And I have changed a lot. I come from places where people have been shot in the streets. You know, what they have these--A lot Italians there, so they had these wars going on around, they had these bookmakers, guys, gangsters, you know. So it wasn't unusual for me to see, as a teenager, bodies show up. They had what they called the Gallo Profaci War, that lasted quite a while. I don't know if you've heard about the Gallo boys, they really fucking upset all the five families in New York. These kids were real 27:00crazy, and they set off a war, that left bodies all over the place. Anyway, with AIDS it was something different. It was really actually knowing you're going to die. I'm reminded all the time, sometimes, I just let it out in tears, or I'll feel sorry for myself every once in a while. Or express anger. Go on an emotional roller coaster. But for the better part, I try to get good things out, you know, like meet a lot of people. I enjoy being around people, thank God. But death is like, there's all these thoughts bouncing around in your head like 28:00jumping beans. You don't know what to make of it; boom, you're just gone. I don't--I don't start making plans. I think if I do I'll die. I'll really die. You can't start making plans.
SEMBER: When you began to see this people, who had been friends of yours andwere starting to get ill, and you began to suspect that you were ill, what happened that you then actually found out that you were HIV positive?
SANDOVAL: Well, I started ill. I started--one of the very first signs was I cameout with Candida. I tried to get it out with a toothbrush, I said, "What the 29:00fuck, what is this? What am I eating?" Nothing. So it went away, after a while, I had a hard time swallowing. It just went away after a couple of weeks. My appetite became very, very poor. And one day I just--I hit with high fevers, and I walked into the Bronx Lebanon and I had pneumonia, coughing. When I heard that, I was upstairs, and they put me in a certain unit, I said, "Oops." But I kind of suspected--I wasn't--I was surprised, I was shocked.
SEMBER: How did it happen? What happened then? You had pneumonia, you were inthe hospital? Yeah.
SANDOVAL: I got out, and I came--My family didn't know where I was, what was30:00going on with me. So what happened was, I came over here and I got very, very depressed. My family, I drove them stir crazy and I told them what I had. And they was, like, shocked. My family, they didn't know I used drugs. First of all, they didn't know I was a drug user. Because they had no reason to suspect I used drugs. That time, it's--you know something, can my sister, can she speak? She can explain--a lot of that time [inaudible].
SEMBER: Now when you went to the hospital, he had pneumonia, and then discoveredthat he was HIV positive, and he came back here and told you, and you found out 31:00that he'd been doing drugs as well?
RODRIGUEZ: Actually, I found out he was HIV positive from my mother.
SANDOVAL: That's what I said. I don't remember the, uh--
RODRIGUEZ: Because, to tell you the truth, I never really believed that mybrother was an IV drug user. For some reason, I never thought he went as far as IV drugs. I thought well, maybe he got high; drinking or drugs like pot or whatever, you know. So I found out through my mother, not actually through him. Okay? When he first became--when you first--I think when you first found out you didn't believe it, you took two or three tests. Remember?
SANDOVAL: Yeah. I was shocked. Because I didn't believe what Bronx Lebanon said.I showed up with these traces of the thrush and the pneumonia. 32:00
RODRIGUEZ: I think he took about three tests just to confirm it. Also, Iremember one time you were on a train and you passed out. They took you by ambulance to the hospital.
SANDOVAL: Right. That was mainly cocaine induced.
RODRIGUEZ: Yeah, but you were sick at that time. [unintelligible]
SANDOVAL: Yeah. I was sick. I didn't know.
RODRIGUEZ: Okay. So when my mother first told me, I was in shock, because Isaid, "Gee, you know, maybe I didn't really see a lot of things, being his sister." I didn't know what to look for. How could you tell somebody is on drugs? I really didn't know what the symptoms were, and how people are supposed to look, and I always picture drug addicts like, not the way he was, because he always worked. He always had a job. So drug addicts, the ones that I knew were on the streets, begging for money, or ripping people off. But he was working. So how could he really be an IV drug user? When I first found out, I was 33:00devastated, because we're nine kids. And we're all alive. All the kids are here, there's nobody dead, you know? And I was really shocked. But I remember when he was first diagnosed, he was really messed up. He was using drugs still. He went to my mother's house to live because he couldn't, he was living with a woman at the time and they had a very bad relationship, a lot of fighting and a lot of problems there. And he went to live with my mother, and my mother was really afraid of him. And I couldn't understand; why is my mother afraid of him? He's her son. I was like, annoyed with her, in a sense. "Why are you afraid of this? He's not--" You know, I always said, "He's not going to do anything to you," because you hear about people killing their whole family, but that happened to 34:00other people. It didn't happen to people like us. You know? So when he was first diagnosed, he was going through a lot of, he wasn't accepting what was happening to him. He thought, I guess, drugs were a way of being oblivious to what the situation was. And we, the family, tried to help him as best we could, but we really didn't know how. What do you do? He was in and out of the mental hospital for a while. He was in and out, in and out, in and out. And we stuck by him; we were with him through thick and thin. There was one occasion where, I'll tell you, very honest with you, I threw up my hands, and I was like, this is it, I'm not going to--
SEMBER: What happened?
RODRIGUEZ: Well, what happened was, my mother called me. My mother had called meand she was hysterical crying, and I could barely understand what she was 35:00telling me, except that he was bleeding, he broke a few things in the house, and he had gone a little berserk. So I went to the house and when I walked in, it was like, he had broken some windows, he had broken some pictures on the walls, he was laying on the floor and he had blood on him, and there was glass all over the place, and I was really, like, my God, how could he do this? How could he do this, because there are kids in this house? I mean, he has AIDS. What is he thinking about? He's not thinking. His blood is here, and the kids are here, supposing they step on this glass. The glass is cut--
SANDOVAL: I just kinda blew.
RODRIGUEZ: The glass is cut--and I was very angry with him at that time. And36:00remember that my brothers took him to the Maimonides Hospital, to the mental thing--
SANDOVAL: Mental health.
RODRIGUEZ: --and they were hemming and hawing with us to keep him on that, and Icalled and I spoke to the doctor, I said, "Let me just say one thing. I'm gonna hold you 100% responsible for anything that he may do for someone else. My brother is right now suicidal. He had cuts on his wrists, I don't even know if he tried to kill himself. All I know is that I got him up off the floor, and I was, at that point--
SANDOVAL: I don't even remember doing that.
RODRIGUEZ: I think I was afraid because, before this happened, I heard of thiskid that was doing crack and he killed his mother, and all these things. And I would say, "My God." That's when the realization hit me. He could be somebody I could read about in the paper, that he could actually hurt his family. So I managed to get him up off the floor, and I managed to get him into the bathroom so he could clean himself up a little bit, you know? And we took him to the 37:00hospital, and they didn't want to, like, "Oh, keep him--" And I told the doctor, I said, "Let me just say one thing. If you discharge my brother after he destroyed my mother's apartment, you are going to be 100% responsible for anything that he's going to do. I'm telling you right now. You cannot let him out of the hospital. You have to keep him there. He is not well." Also, he made my mother go fleeing into the street, because he woke her up and he said something like, "Get up and leave the house."
SANDOVAL: I got very, very, very confused sometimes.
RODRIGUEZ: He was paranoid, he was confused.
SANDOVAL: The biggest mistake that I did was having all these problems andinjecting pure cocaine. It really threw me off. Paranoid, forget it.
RODRIGUEZ: My mother got up, and she flew out of the house with her nightgown,no shoes or nothing, because she was afraid that he would actually end up killing her. My mother was scared to death of my brother. And at that point was 38:00when I realized, well, she really does have a reason to be afraid of him. Before that, I wasn't afraid of him at all, because I didn't think he would do anything like that. So I argued back and forth with the doctors, and I threatened, whatever, "I'll call the paper if anything happens to him, you're responsible. You're not--" And they admitted him. But he was in and out, I would say about four times, five times, right Willie, in the beginning?
SANDOVAL: Psychiatric, yeah. It was hard for me to stop using drugs--that's whyI told you, overnight and everything was okay with me? It didn't happen that way. It took a long time, months. It took a lot of people who stuck by me; mainly my family, later on, people like the ACT UP, GMHC and things like that.
RODRIGUEZ: We were--At that point I was angry with him, and I said to myself,"There's nothing I can do with this guy, he's going to continue to use drugs, 39:00he's going to continue to endanger his family," so I have to--I felt at that point I had to face the realization that, even though he's my brother, I had to just cut him loose, because there are plenty of guys out there that, they are dying, but their families have totally disowned them, okay, completely? And after he went in and out of the hospital, in the beginning, four or five times he was in and out. That's when he started eventually coming around to being--
SANDOVAL: Narcotics Anonymous.
RODRIGUEZ: He got into programs; he got into the discipleship, he startedmeeting a lot of people, he got involved with GMHC, he started putting all his energy into more positive things. But it was extremely hard because it was at a point where it was like--we had a lot of problems within the family anyway. From 40:00the time we were little it was problems and problems. And just to have more problems, it was really difficult. Especially because I felt like, at that point, that it was basically my mother, I had to sort of stand strong for her, and it was me, and there was really not--even though we're a big family--there was really not any, much help from anybody else because everybody was wrapped up with their own problems. And nobody was really-- everybody was sort of like, "Well--" and they didn't want to deal with it, and they sort of kept their distance. You know. And after we went through all of that, it was over about a year or more that we went through changes with him. My mother was finding things; like hypodermics, paraphernalia and stuff like that in the house, and even when she told me that, I still said, "Ma, maybe he's--" You know, it was like, I don't know if it was ignorance or what it was. 41:00
RODRIGUEZ: Yeah, maybe it was that. All I know is that I just felt that maybe Ishould have seen something or maybe I should have noticed that he was doing something, but I couldn't see anything different. What was he supposed to be acting like, and stuff like that? The only time I saw him really bad was when he went on these binges [unintelligible].
SANDOVAL: Even today, I'm terrified of drugs. I really am. What it can do for meagain. I'm lucky that. I don't think the AIDS virus would have killed me at that time. I think that the cocaine, it really picked me apart. I'm so scared of cocaine, of drugs, now, for what it did to me. I couldn't imagine a second round. I couldn't even--It's inconceivable. So I, you know--yeah.
RODRIGUEZ: He was living with this girl for a while, in the Bronx, and he even42:00went as far as setting fire to her apartment, okay?
SEMBER: Was this sort of behavior something that happened after you'd beendiagnosed, or had you [unintelligible]?
SANDOVAL: It was kind of bizarre, because I was using more cocaine. Even at myjob, they were kind of like, "What's wrong with this guy?" By that time I was shooting pure cocaine, uncut cocaine. Not wholly uncut, but enough to really--I tell you, I would go home and I would think people were following me around all the time.
RODRIGUEZ: He was very paranoid. That's what I noticed about him. He didn'ttrust anybody.
SANDOVAL: People were poisoning my food. I asked my mother one time, "What areyou putting in my food?" My mother said, "I didn't put any--." Not only her, too, a few people. I wouldn't trust; I broke relationships with a lot of friends, because they were up to something.
RODRIGUEZ: He didn't trust anybody at all.
SANDOVAL: The more paranoid I got, the more cocaine I started shooting, which43:00was [unintelligible]. That was what was inducing the paranoia.
RODRIGUEZ: I think it was his escape from what happened to him, what washappening to him.
SEMBER: For you, it must have been an incredible shock to have all theserevelations, these revelations; here, your brother, who you had been through all these experiences with as a child, all of these troubles in the family and so on. He'd been--you'd seen him as being fairly responsible, he had a job, and so on--
RODRIGUEZ: That's what I mean, it was like, weird.
SEMBER: --and then suddenly he comes to you and he says, "I'm an IV drug user,I'm HIV positive, I'm ill," and then all of this stuff happens. It must have been really--
SANDOVAL: That's why, a lot of times, in that period, when they ask me, Ican't--sometimes it's--
RODRIGUEZ: --We still stuck by him, because the bottom line, I felt, was that nomatter what he did he was still my brother, we grew up together and we had a lot 44:00of good memories together, even though there were a lot of bad memories, there were a lot of good memories, and how could I just walk away and make believe it didn't exist, just because I was comfortable in my house, and I could just be oblivious to everyone else's problems. I couldn't do that. But eventually, after about a year or more of in-and-out-of the hospital, he started, really started to come around. My brother is a completely different person today. He has, without exaggeration, he has touched a lot of people, and I truly believe that he has really changed a lot of lives, even kids. He's gone to lots of lectures, he's gone to schools to talk, he's gone to churches to talk to the kids, and he has such an impression on people, and not only the people, but the kids. He speaks to them, and I think they can relate to him more than they can relate to 45:00a teacher or someone like that, or they're own parents, because this is a person who's from the streets.
SANDOVAL: When I went with Lila to Staten Island, after a year and a half thekid says, "Mommy, that's Willie. That's Willie." Ever since I spoke to the kid a while back, I really shook him up with AIDS, he's really--
RODRIGUEZ: Yes. The mother came over the thanked you. She felt that he reallydid something for this kid, in the sense that this kid might not ever use drugs, because of my brother.
SANDOVAL: I scared the hell out of him.
RODRIGUEZ: And even people that have used drugs, and are HIV positive today, andfelt there was no hope; my brother has really spoken to them in a way that they have seen that they can still live a good life, for whatever life, for whatever long they have. And I really think that no matter what he did, all the things that he did, he's made up for them a hundred times over. I tell him this, I 46:00said, "Whatever you did, you made up for it a hundred times over with just, what, the kind of person you are today." And my mother is very content, even though of course we're all sad about what's happening to him, because a lot of times I'll try to be strong for him, but I'm really devastated by the fact that my brother's sick, and I know that he's very ill. But at the same time, I say, some people live all their lives, and they never experience the quality that he's experienced in the past, I would say, four years, right?
SANDOVAL: Four years, exactly, July.
RODRIGUEZ: Four years exactly, yeah. And he's loved by a lot of people, and Idon't even think about the things he did before.
SANDOVAL: Sometimes, today it's hard. Forgiving myself is very difficult.
RODRIGUEZ: No. It was harder for him to forgive himself than it was for us. Weforgave him, we didn't--Today I don't even think about the stuff he did. At the 47:00time we were traumatized, but today it's so faded. It's like, I don't even think about it or put any importance, neither does my mother, neither does my family. We see the person he is today, and he's a completely different person, and we've discussed a lot, saying, "What do you think, if you didn't come down with this disease?" And he feels that maybe there was a purpose to him getting sick because he doesn't know if he would be straight today if we wasn't sick. He may, he might--
SANDOVAL: I was really going on a real road to destruction.
RODRIGUEZ: He might've ended up maybe killing somebody, in jail, or just endedup dead himself with an overdose of drugs or something. But he would have never been the person he is these last four years. So in reality, the quality of his 48:00life is much better than it always, than it ever was, because before he was--Ever since he was little, he was--there was always trouble. But I think it's because, also, the way we grew up. My father was an alcoholic, and he used to beat my mother, and we were very poor, and there was really no--
SANDOVAL: Funny. I never see myself as a poor--as poor, even when I was a kid.
RODRIGUEZ: We were poor.
SANDOVAL: We were very poor, extremely poor. But I found that out later on, thatwe were very, extremely poor. Because, remember Sackett Street? It was a simple place to grow up, no big deal.
RODRIGUEZ: But we were poor. There were times when we didn't even have food inthe house.
SANDOVAL: Right. My mother had to go to, what, the church. The Catholic churchand get these foods, they would give donations. And I had a father that worked.
RODRIGUEZ: We didn't have a father that--there was nine, there were sixboys--that would take them out to the park or play ball with them. There was 49:00just no--
SANDOVAL: I've never been out with my father.
RODRIGUEZ: --connection, no connection with him. To this day there's noconnection. He's just somebody that was there, but he really wasn't--He is an extremely good father. He is very good to his children, he's very caring, very loving, very giving. He's everything that, you know, my father wasn't.
SANDOVAL: I didn't want to be where my father was.
RODRIGUEZ: And a lot of times, when you grow up like that, the kids grow up thesame way; they're the same with their kids. But not in all cases, because my situation and his situation are very different. It didn't make us be that way with our families, you know? But my mother is, she talks to me a lot, my brother tries to keep a lot from her.
SEMBER: Like what?
RODRIGUEZ: Like he doesn't tell her everything that's going on with him, howsick he is, how sick he feels. 50:00
SANDOVAL: She knows.
SEMBER: Why do you do that?
SANDOVAL: Because, I don't want my--My mother has a lot of worries, a lot ofproblems, she's always--I don't want to add any. Some people say, "You should share this with her." My mother has a very--she doesn't know a day of happiness in her. My mother always has been going through things like that, at least for once in my life I don't want to add on to any of my mother's problems. I laugh sometimes when I'm ill, "I don't worry about it!" But she knows, she's a mother, my mother senses things.
RODRIGUEZ: The last time he was in the hospital, he was feeling pretty sick, hehad called her and told her not to come to the hospital and see him, and I think what he does is he doesn't want her to see him sick, when he's really sick.
SANDOVAL: No, I don't.
RODRIGUEZ: But what he was giving her, at one point, was she was getting badvibes, she felt that maybe he hated her. That's why he doesn't want to tell her anything. She felt guilty; maybe he has things against her, maybe she didn't do 51:00enough for him growing up, maybe she should have done things differently, and she was having a lot of guilty feelings about it. My mother has [unintelligible].
SANDOVAL: That's right. I was floored when you told me that.
RODRIGUEZ: I had to tell my brother. I told my brother, "You have to speak toMom, because she feels that you hate her and you blame her for why you're sick today, and she has a lot of guilty feelings about; maybe she should have done things different when we were growing up, maybe if she would have done this, maybe if she would have done that." My mother didn't have an education.
SANDOVAL: She did the best she can, Rita. She did the best she can.
RODRIGUEZ: My mother had to raise us. Under the circumstances, I think she didthe best she could, because she had really nobody. My father, he cut out when we were all young, so she was stuck with nine kids, and she really, I think she did the best she could considering the situation she was in. But I think Willie and 52:00her got that straightened out. They had a long talk and he made her realize that he didn't hate her.
SANDOVAL: I told her, "Ma, you're my mother, my God, how could you ever thinkthat I'm going to--"
RODRIGUEZ: But she was getting these vibes because he was keeping so much fromher that she felt, "Well, he doesn't want to associate with me. He doesn't want to tell me this."
SANDOVAL: I don't want to hurt her no more.
RODRIGUEZ: But now she realizes that it's just that he's trying to protect her.
SEMBER: Does she appreciate that? What is your impression of that?
SANDOVAL: I don't think she does. See, my mother's--I always get the impression,I'm saying to myself, "She doesn't believe me." Which is true, sometimes I try to flimflam. Lately, I'm been very honest with her because she senses when I'm not telling her the truth. She's a mother, she knows me, and she asks me, "So, how are you feeling?" I tell the truth, I say, "I don't feel good." I go to her house to see her and I wind up sleeping. Or I'm cold, I ask for blankets. I 53:00mean, come on.
SEMBER: Is it painful for you to be with her?
SANDOVAL: Sometimes, yeah. It's very--I look at my mother and it's like,sometimes, "I did this." What my father did to her, her son put her through a lot of things also. Do you understand what I'm saying? It's like, what, are we taking turns, man? We're making my mother go through all this? I have to live with it. I've got to take, in my grave, a lot of guilt. My mother doesn't know what it is to be a happy person for six months or 30 days. She doesn't know. And I know she's ripped apart, and it hurts for me. I love my mother a lot, so it's like, I don't know, I look at her sometimes and she tries so hard. My mother 54:00tries so hard with us. And look, one son's got AIDS, one's going through all this shit. She's a strong woman, though. Other people would have really broken, my mother's still hanging in there.
RODRIGUEZ: And still, all the problems still end up on her doorstep. Even thoughall her kids are grown and older, they're always causing some kind of a problem within the family. You know?
SANDOVAL: There's always something going on.
SEMBER: She's the worrier in the family?
RODRIGUEZ: She's the worrier. And I worry, and she calls me and she sort ofunloads on me, all these problems and stuff. And right now I feel like, we're dealing with my brother, Willie, and his problem and we're stressed out enough 55:00with his illness, and I have no patience for all this other bullshit. Excuse the expression, but that's the way I feel. Well, this one is already 40 years old. If he can't get his act together, too damn bad. I don't give a damn about these guys. They're not sick, they're healthy. They can go out there and get a job and take care of their families. Why are they causing problems now, when we are dealing with this problem with my brother? In and out of the hospital, in and out of the hospital, you know? 'Cause I don't have the patience to deal with any other problems, and I told my mother she's just got to just not take on any more problems or any more responsibilities. I let her see that it's enough with Willie right now. This to me is more important than anything else going on in the family; who had a fight with their wife, who's ready to leave their wife, who doesn't want to go to work, who drinks too much. You know, who needs all 56:00this? How old do you have to be? Eighty years old and then you finally begin to settle down or do what you have to do? I've been working for 25 years, since my kids were 2 and 3 years old. And a job never killed me, you know. So don't talk to me about problems. You're a man; you should be out there establishing yourself somewhere. And that's where it is, but my brothers are just not established. They're like, they're already older and nobody's gotten themselves together.
SEMBER: And this is something, and this comes, this kind of attitude is, hasbeen prompted, to a large part, because of the experiences that you've been having with Willie? It's kind of put things in perspective, and you've said, "Well, this is a problem; here's somebody, in the family, who's really having to deal with a problem."
SANDOVAL: We deal we're multiple problems. Especially, like me with AIDS, andwhat. There's a lot of other things that aren't even AIDS related that get me real-- 57:00
RODRIGUEZ: Yeah, but I've gotten to the point where I tell my mother, I say,"These guys are already 40 and above. Okay? And if they haven't gotten their lives together yet, I'm not going to care." I'm at a point now where I just don't care. They're my brothers and everything, but there's nothing wrong with them. My brother's sick right now and he has always been, as much as he went through all his problems with drugs and everything, he was always the kindest, him and my brother Armando. Always the most caring, always the most giving. Okay? So he came down sick, but I don't ever think he deserves to get sick, or anything like that. Because he was always, he was basically, he was always good to my mother. He had his problems, but he was always very generous and very good to my mother. The others, all they did was bring her a lot of trouble. You know? And I have put my foot down in a lot of ways as far as that, because I have to 58:00draw a line, because if I start getting wrapped up with this problem, and the other problem, and the other problem, and then, I'll go, "What about my husband and my kids?" I have a family, too. I have a job. I have to draw the line. I said, "No, I am not going to deal with anybody else's problems." Right now we're dealing with my brother and his illness and that is enough. And nothing is going to be above this. And nothing is as important as this, anyway, as far as I can see. Everything else is minor. Because they are not helping in any way, the only people who have really been through thick and thin with my brother has been myself, my mother, my sister Violet and my brother Armando. Only four of us, okay? The rest of the family has sort of; they're never there anyway when you need them. And they were never there when he needed them for anything. When he became too, too ill to be on his own, I took him in here. He was going to go 59:00into a hospice, right, Will? He was gonna [unintelligible].
SANDOVAL: I was going to go into Bailey House. I was telling you, I justcouldn't get up the stairs anymore. I would have money, but I wouldn't eat because it was--Not because I had no one to go to the store for me, and things like that.
RODRIGUEZ: He couldn't walk the stairs. And even though I used to go to hisapartment periodically, I used to bring him things.
SANDOVAL: In the evening, but in the daytime, the breakfast and what, I just couldn't.
RODRIGUEZ: And he called me at work, I remember one day, and he called me and hetold me what his decision was. I never went to home; I left my job early that day.
SANDOVAL: One of the guys from ACT UP that's a doctor, he said I could get youin there fast, Bailey House.
RODRIGUEZ: He could have gotten in there. But he called me, I was hystericalcrying at work, because I said, "My God, he was telling me it's a nice place and everything."
SANDOVAL: It is. But it's not home, in Manhattan.
RODRIGUEZ: The idea was that you were going to be in a strange house, and you60:00were going to be with strange people, and he would die with these strangers. And I said to myself, "There's no way that I could allow this to happen." See, I can't just walk away from something like that and not feel guilty. Maybe some of the family can go on with their lives and not feel any guilt, but I couldn't, and I remember I left work, I was too emotionally upset, and I spoke to my husband, and I wanted so bad to say, "I want to bring him here." And my husband said, "If you want, he can come here." But I didn't want it to be solely my decision, because I'm not one person.
SEMBER: What about your children?
RODRIGUEZ: My children are fine. They love him. They don't mind at all that he'sin the house.
SANDOVAL: See, my family doesn't treat me like--This is what I told you first of61:00all, "I, I couldn't make it without them." It would have been impossible. I don't care what programs are out there. Without my family I wouldn't have made it. It's, like, no one in my family treats me any different, as far as like, never, never.
RODRIGUEZ: I didn't know anything about AIDS. When I heard he had AIDS, I wentto the library and took all the books I could, because I knew absolutely nothing about this disease and it really wasn't a disease. I was hearing about it and I was reading about it, but it really didn't touch me. But when I knew he had this disease, I wanted to know everything about this disease. And I knew you couldn't get AIDS by the way people--you know, they don't want to touch you, they don't want to kiss you on the cheek, they don't want to live in the same house, and I 62:00knew you couldn't get AIDS like that. So I was never fearful of this disease, because I knew that he could live in my house and we would be fine. None of us were going to get AIDS, you know? But he's been here, and he's been very happy since he's been home from the hospital. He stays content; he sits on the porch, he sleeps, I come home, I cook, he eats. I usually try to keep everything he needs in the house, and here it's better than when he was living in my mother's house, because she only has three rooms and it was very crowded and there's two little kids, there was no privacy, there was always a lot of hollering and a lot of talking. Over here, he has his room, he can close his door. Nobody will bother him. It's quiet. I don't have any kids in this house, little kids. So for him to be here is much better. And I felt that, for what he has left of his life 63:00that he's got to have some kind of tranquility, some kind of peace. Not being stressed out because he can't go up the stairs or go down the stairs or get to the doctor's or eat or anything like that. And I feel better since he's been here because I was constantly worried about him when he was in the apartment, I was constantly worried. Is he eating? Is he all right? I used to think, "My God, what if he gets sick during the night?"
SANDOVAL: Sometimes you've got to prepare a meal. Just standing there, yourlegs, your knees, unbuckle on you. A lot of times I didn't eat because of that, not because of the lack of food, although sometimes that became a problem, but not really. Not all the time. It's just hard. Believe me, it's hard. It was very hard. I was all the way on the fourth floor. That was a hike.
RODRIGUEZ: I used to walk up those stairs, and used to get up there with mytongue hanging out of my mouth, and I was healthy. So he used to walk up and sit, and walk and sit, and walk and sit. That's the way he went up those stairs. 64:00
SEMBER: What is it--We were talking about what it was like to have him come andlive here, for you, with the family and everything. Is there a way in which the neighbors, and the neighborhood and your community here has been influenced by you being here?
SANDOVAL: They don't know.
RODRIGUEZ: No, because basically everybody in this block, basically everybodykeeps to themselves. The only people we know are these neighbors, and he'll sit on the porch and he'll talk to the old lady who just had a stroke, my neighbor's mother. Or he'll speak with my neighbor. But basically around here it's not the kind of neighborhood like my mother's neighborhood, where everybody sits on their stoop and gossips and criticizes, and--
SANDOVAL: See, the neighborhood down there is overrun by AIDS. So it's no secretthat I have AIDS over there. AIDS is very common around there.
RODRIGUEZ: It's different. Over there it's like typical.
SEMBER: Where is that?
SANDOVAL: Sunset Park, 42nd Street and 4th Ave. Right in that block alone, about65:00four or five people died of the disease.
RODRIGUEZ: There was just a child of 2 or 3 years old that died recently.
SANDOVAL: A couple of them weren't, were gay guys. What I'm trying to say ishere it's a little quieter. There's no reason for them to know, anyway. I don't know anyone here. But over there, people do know. They're more, they're more--See, like in the city, there's always a big difference between people with HIV. Over there, people are more open-minded with AIDS. Here in Brooklyn, they know we have it but they're much more subtle. They're not as vocal as people in the city are. Sunset Park, we're the second leaders in the city in the AIDS epidemic. Like I told you, it's just exploding.
RODRIGUEZ: Yeah, Sunset Park really, really has a lot, a lot of people. Justabout everybody has a family member around there. 66:00
SANDOVAL: We're number two in pediatric, also, AIDS.
RODRIGUEZ: He just lost a friend, a girl.
SANDOVAL: A couple of days ago.
RODRIGUEZ: She just passed away, and has a five-year-old daughter who is alsoHIV-positive. And, you know, just anything about where he goes--he's in a good hospital, and it's an excellent hospital, there's a special AIDS ward and everything. And the nurses are good.
SANDOVAL: You spoke--he mentioned he spoke with Carol.
RODRIGUEZ: Yeah, Carol is fantastic. But you go there and you're talking tothese people. You go there so often because he's in the hospital so often, then you go back the next day, and this one died, the other one died, this one is dying. It's like, my God. It's really scary.
SANDOVAL: It wiped out a better part of the crowd I used to hang out with.They're gone.
RODRIGUEZ: Mainly he's the only one still around.
SANDOVAL: I'm one of the ones that are still around. For what purpose, I don'tknow. But I am, and like up here, I'm the new kid on the block. I mind my 67:00business. I sit on the stoop, people look at me, they probably say, "Oh, they must have sold the house, probably." I could imagine that's what they're thinking. I go from here, I buy something in Key Food or whatever. But, like I mentioned before, in my neighborhood down there--I still say, "My neighborhood"--it's like AIDS is not a secret in that neighborhood. There's a high concentration of drug users around there, so it's like that, but AIDS in Brooklyn, I always say--That's why when I heard that the Brooklyn Historical Society--I said, "This is going to be fun." Because even the hospitals are different. I'm going to give you a good example, St. Vincent's and all that, I know a lot of people from, that work in GMHC, or volunteer there, or from ACT 68:00UP, or are physicians or technicians at St. Vincent's, St. Claire's --these people are very open-minded, even the doctors. I'll give you a good example: You say, "Well, Doc, you know, (in Manhattan), let me try the vitamin C treatment." We know that they can't give you this in the hospital because it's not approved, but they have places that you can get it. They'll monitor your blood work. In Brooklyn, they say, "What, are you crazy? You can't do that!" "Why?" "You just can't, it's not approved by the FDA." So what? They go nuts when you approach them with alternative treatments here. This is the big difference in hospitals.
RODRIGUEZ: They believe in science. They believe in drugs. Vitamin C is notgoing to do anything for him, and acupuncture [unintelligible].
SANDOVAL: But some people got a whole lot better with these things.
RODRIGUEZ: But this is the way these doctors think.
SEMBER: Why do you think this is?
SANDOVAL: They think. I don't know, but it's very strange between Brooklyn and69:00the doctors in St. Vincent's and St. Claire's. I think it's more; it's that they've been in the battle with AIDS so long that they see maybe some improvement with these drugs. They're more open-minded. The AIDS unit in Lutheran is only three years old. These doctors just got themselves together with AIDS. They're still, like, as opposed to 10, 12 years in Manhattan, these guys are just getting into it.
RODRIGUEZ: They're more sophisticated in the city.
SANDOVAL: Yeah. And you talk to them about acupuncture. They look at you as ifyou're mad. They tell you can't--you shouldn't do that. You say, "Why?" Because it's not approved, they have no answer.
SEMBER: It's strange, because you'd think they'd be speaking to each other.
RODRIGUEZ: There's not alternative. There's nothing else they can do for him so [unintelligible].
SANDOVAL: There is. I just started vitamin C treatments two days ago. Give it achance to work. Obviously I'm not--I'm getting desperate, man. I've gotten a lot 70:00worse. Alternative treatments could be the thing of the future. I might go onto IV vitamin C. I'm going to see how I react to the powder form, and the garlic treatments, and things like that. I'm popping garlic. Like I said, Dr. D went nuts when I told him. He went bonkers. But it's my body.
SEMBER: What treatments have you gone through? What are you doing now?
SANDOVAL: Well, right now, they have this--Recently I had tubes in my chest. AsI mentioned I was on--I forgot what--I'm forgetting things all the time. What's the name of that drug they were giving me?
RODRIGUEZ: That new drug that they gave you. You protested to get that drugapproved. It could damage the kidneys.
SANDOVAL: This was one of the drugs that ACT UP really pushed for. It turns out71:00it's a piece of shit. We were wrong. Maybe on some patients it works. It can damage your kidneys. It's something in the field of Ganciclovir, it's for CMV or related drugs. I was on the trial run when DDI was a trial. I went on those types of trial runs.
RODRIGUEZ: Then AZT you took also.
SANDOVAL: I tolerated AZT for a while.
RODRIGUEZ: And then it wasn't doing any good.
SANDOVAL: After a while, I got sick off it. But I did well for the 18 months,almost two years, with it. AZT was no problem.
RODRIGUEZ: I think that once you progress in your disease, there's really notthat much that they can offer you as far as alternatives. Because my brother, right now he's got full blown AIDS, right?
SANDOVAL: I've been as full blown AIDS for a while.
RODRIGUEZ: Right. So basically there's not much they can offer him.
SANDOVAL: My diagnosis, I can be worse and then all of a sudden I'll just start72:00improving. Like boom, bing, I'll be okay.
SEMBER: Does it feel like this is one of those times?
SANDOVAL: Right now, I'm getting I still feel ill, but I don't feel as ill as Iwas in the hospital. I think I needed to get out of there. But I've been taking vitamins and I'm getting a little stronger. Yeah.
RODRIGUEZ: And I think mentally he's content. He's happy being here. He's happybeing here--He likes to just--
SANDOVAL: It's a lot of peace of mind, tranquility.
RODRIGUEZ: Nobody bothers him; he can sit on the porch, he can take a walk, hecan watch TV.
SANDOVAL: I was there all day, on the porch.
SEMBER: I bet that makes such a difference, to have somebody who loves you.
SANDOVAL: Yeah, love is good medicine. You die without love. People die, peoplelive alone. Elderly people die; they get sick, without no one to love them. But now, I have to take these certain medications. I mean, I don't take anything. I 73:00only take a prophylactic, to be honest with you. I refuse to take a million medicines like I used to take in the past. Why do I need it? I don't need this. I can get the same thing from vitamins, from foods. Right now I deal a lot with diarrhea. That really winds me down, runs me down.
RODRIGUEZ: And vomiting.
SANDOVAL: And vomiting.
RODRIGUEZ: And fevers, knock wood--Where's the wood? You haven't gotten a feverin a couple of weeks. He usually to gets fevers of 105, to 105.
SANDOVAL: Couple of weeks. I get all mixed up.
RODRIGUEZ: He gets very disoriented, and delirious, and stuff like that.Usually, any time he goes to the emergency room, every time that's he's gone, they always leave him. They never send him back. We bring his bag.
SANDOVAL: My bag's already packed.
RODRIGUEZ: His bag is packed, we would go to the emergency room, and he stays.74:00
SANDOVAL: I know I'm going to stay.
RODRIGUEZ: They never say, "Go home." Never, because when he goes, he's ill.Because he will not go to the emergency room unless--and I sometimes have to push him, like, "Are you sure you want to wait some more? Are you sure you don't want to go today?" "No, no, I'll wait until tomorrow." Then, after a little while, "I think I better go today." You know, because we're going to end up getting up in the middle of the night and bringing him to the emergency room. So, basically, he knows when he has to go in, so I leave that up to him, I don't like to push. I don't want him to think I'm trying to get rid of him or something. I'm just concerned. My fear is that something will happen to him here, and I don't want that to happen, because then the kids will be here, it's too emotional, too upsetting, God forbid anything happens and he's here. Then we can't--I don' t know how we could deal with that. If he's in the hospital, I 75:00feel that at least, anything that could, they could sort of take care of things, because they're professionals and they know what to do.
SANDOVAL: I really got to come in. What really pushes me to come in sometimes isthe breathing. There were a couple of times that I had to sit up in my bed, high, to just--because if I lay down because, whoa, the air just goes.
RODRIGUEZ: Because he has trouble breathing. He needs oxygen.
SANDOVAL: I get oxygen right away, you know. But I don't have oxygen here. Ithink I should have, but I'm on Medicaid, and the Medicaid, they're like, doing a good number on us. So I don't think I'm going to get that tank.
SEMBER: What has it been like, dealing with the hospitals and dealing with insurance?
RODRIGUEZ: Well, when he changed--When he used to treat himself from Lutheran,it was really--
SANDOVAL: No, Maimonides.
RODRIGUEZ: --Maimonides, in the medical end of it, it was terrible. I wouldn'trecommend anybody with AIDS goes to that hospital. It's strictly--it's weird, 76:00very, very. They're not up to date on anything, on anything.
SANDOVAL: They're way--they're back. They're very far back. It's a JewishOrthodox hospital. They resent us. They really do.
RODRIGUEZ: That's what it is. It is a Jewish Orthodox hospital, and this issomething, again, they--
SANDOVAL: They resent us. They sent me home with PCP.
SEMBER: Why do they resent [inaudible]?
SANDOVAL: I don't think they--They looked really down on us, because a lot ofthem are Rabbis that go over there. Kosher hospital.
RODRIGUEZ: Everything is kosher in the hospital, everything. They sent him homeone day with PCP when he could barely walk. From that hospital we went to Methodist, and they admitted him. How do you figure that? They could discharge him in one hospital and admit him in another hospital? And then, after that, because my daughter is a nurse in the Methodist hospital, so one of the doctors she knows was willing to treat him, even though he had his office, he would accept his Medicaid and everything, just as a favor. So we discussed it for a 77:00while, and he felt that the best place for him to go would be--'cause at that point we just wanted to forget about Maimonides, that wasn't the hospital for him. And he decided on Lutheran because it was an AIDS designated hospital, and I think Lutheran was the best choice because--
SANDOVAL: I knew everyone there, anyway.
RODRIGUEZ: He knew everybody there, because he was in and out of there visitingpatients, constantly. He knew the nurses, knew the doctors, but in this hospital, in this special unit there, it's absolutely, I tell you, I always felt that I'll always be grateful to these people.
SANDOVAL: They're good, yeah.
RODRIGUEZ: These nurses, these doctors, so caring, so attentive. It's absolutelylike night and day. This was the place and he goes there, and I feel good that he's there because of the way they treat him. Sometimes he complains, they don't leave him alone, they're constantly bothering him, constantly monitoring him, and I tell him, "You could be in another hospital, they let you die before they give you anything. Don't complain about this treatment, you can go somewhere else and they can neglect you. They don't do nothing for you."
SANDOVAL: They got to give you your medication; they wake you up with78:00thermometers. This is long hospital stays--they start making me--so that's why they give me a pass for a few hours sometimes, if I'm not running fevers.
RODRIGUEZ: Thank God, that is one thing I am really happy about, is the factthat he's been treating himself in Lutheran Hospital.
SANDOVAL: It took me a long time to get up the courage to try really--to getinto real alternatives. So I think vitamin C is going to be the thing. It's no longer a matter of having my doctor. I'm not questioning the competency of my doctor, he's a good doctor. He's a medical doctor, but he's a medical doctor. There are other ways that people can treat themselves--Anything that could make me healthier.
RODRIGUEZ: Maybe it could help him. Maybe it could make him a little bit79:00stronger. Maybe it will make him walk a little bit better. I think anything that could help him live his life with a little bit more quality, it's okay to try it. There's nothing wrong with that. He's not using illegal drugs. This is just vitamin C. People take pills every day, so he's using the powder form.
SANDOVAL: They know what I take. I always tell them what I took. I've seen acouple of people go into comas because of mixtures. [Interview interrupted.] What was I saying?
SEMBER: About how you tell the doctors what you're taking.
SANDOVAL: First of all, the drugs that I take, it's nothing heavy. You know,alternative treatment things, you can get it right here at the PWA Health--if 80:00you're familiar with the drugs--the PWA Pharmacy, is it? You can get certain things, like Alpha Interferon. I was on this drug for a while, Peptide T, in the nose, the nasal. What happens with Peptide T, when you're far gone in HIV, it's not much of a help. It works better with people who are in the early HIV stages, or just starting to show symptoms. So I went kind of beyond that.
SEMBER: You mentioned Medicaid cutting everything now. Has that been yourinsurance the whole way through?
SANDOVAL: Yeah. And Medicare
RODRIGUEZ: Medicaid and Medicare.
SEMBER: How has it been?
SANDOVAL: I didn't have any problem with it. I knew they had some cutbacks andwe had to cut back on clinic visits. A funny thing, last month, I found out that 81:00I wasn't covered. They cut my coupons, there is some rent money they allow me, and the Medicaid. I said, "Why?" They said, "You've been in the hospital too long." I swear, I'm not kidding you. That's the answer. I was, like, phew.
RODRIGUEZ: They just cut his benefits. Would you believe it, on top ofeverything else? Because he was in the hospital almost two months.
SANDOVAL: They figured that they shouldn't cover me, I don't know why they coverit, but they should. They're going to cut my food stamps, and I have a rent allowance, because I'm not here anyway, I'm in the hospital. Okay, that's crazy. But why cut the Medicaid? Because you've been in the hospital too long. I don't know.
RODRIGUEZ: I don't know. I don't know what was the--and right now, he's withoutbenefits, I want you to know.
SANDOVAL: I don't have any coverage.
SEMBER: How are you paying for your medications?
SANDOVAL: I'm not. Lutheran Hospital gave me this voucher now, and I wentdownstairs and they gave me some medications, but how can I keep doing that? 82:00
RODRIGUEZ: They're working on getting his benefits back, but the answer was, hiscaseworker wanted him--told--his social worker in the hospital wanted him to go down to welfare. Do you know what that is like, to be in these places? You have to be there all day? He said, "What are you? Crazy?" This man can't even walk half a block, how can you expect him to go down there and do this whole bureaucracy, you know?"
SANDOVAL: I get sick when I walk a few blocks. I start vomiting and I startgetting very ill.
RODRIGUEZ: He gets disoriented and he gets very sick. So he cannot do any ofthis. I did everything. I got a power of attorney, so that I'm his power of attorney.
SANDOVAL: I can't believe that they actually took it off for this reason. I haveto laugh, because I really don't--I still don't understand why it was cut.
RODRIGUEZ: [unintelligible] that he doesn't have an apartment. If he would havehad an apartment, they wouldn't have cut his benefits. Even though in his apartment he was paying almost $700 a month, okay? 83:00
SEMBER: It's like they're saying, "Okay, you do it now. You're family, you takecare of him." And also [unintelligible] for two months [unintelligible].
RODRIGUEZ: Yes, and that's it. But what about medical?
SANDOVAL: I don't have Medicaid. What about the Medicaid? It was such a stupidanswer they gave me. I can't believe that they would actually do this.
RODRIGUEZ: He's got to worry that if he's in the hospital, if he's really ill;he's got to turn himself out for a month?
SANDOVAL: Yeah, so if I'm--exactly. The social worker, I said, "If I'm going tobe in the hospital, every three and a half weeks I've got to sign myself out and go to the emergency room?" She went--it's so stupid. I would like to know the origina--, where this thing originated. I mean, so I can tell them how smart this guy is. It really doesn't make any--
RODRIGUEZ: That's why the city is in so much trouble, because of all the--I84:00mean, they'll pay almost $700 on an apartment that he's not using, but because he's living with me, it's okay not to give him anything at all. I could never put him under my coverage because he's not my son. You know what I mean? I can't just say, "Put him on my plan." I can't do that. What are they thinking, if they just throw all the responsibility on us, here?
SEMBER: There's no way that you can afford to pay these bills.
RODRIGUEZ: No way. It's ridiculous.
SANDOVAL: To see, the medication for HIV, the price tags on them?
RODRIGUEZ: So they're working on getting his Medicaid back again.
SANDOVAL: You know what I told my caseworker? I don't care. You think I'm goingto go down there? Forget it. I'm not going down there. That's it. I don't know what happened, but I know that it shouldn't have happened to me.
RODRIGUEZ: He's had rotten luck when it comes to his benefits.
SANDOVAL: They got all these bums, people that never worked, bums.
RODRIGUEZ: You know what we found? That if you never worked a day in your life,85:00you were better off. Does that stink?
SANDOVAL: You get a little more money than I would.
RODRIGUEZ: If you never worked a day in your life, you will have everything fromsoup to nuts handed to you. You don't have to worry about paying for medicine; you don't have to worry about nothing.
SANDOVAL: The Blue Cross, the Blue Shield.
RODRIGUEZ: But if you worked, that's when you have problems. That's what they'retelling the working class people. It's like, he has a lot of friends that have always worked, and they don't have Medicaid now. They can't work, but they still have whatever insurance they have, but they still have to pay for medicines. That only covers a certain amount of money. They have to payout of their pockets. Meanwhile they get, whatever, their disability or whatever it is, and these are people that worked all their lives. The people that never worked are getting more benefits than the people that worked. That doesn't make sense to me. I find that totally confusing, very.
SANDOVAL: These are things that you, uh--86:00
SEMBER: These are my questions. Are you okay? Is it getting a big cold for youout here?
SANDOVAL: I'm okay.
SEMBER: I have a few more questions.
SANDOVAL: Go ahead.
SEMBER: I just want to backtrack with you; there are a couple of gaps so far.When we're talking about you finding out that you were HIV positive, you'd gone into the hospital, did you ask for a test, or did they just do the test? How is that somebody came to you and said--?
SANDOVAL: The first test was done in the Bronx Lebanon, right? It was because,yeah, I requested it in the emergency room because I started getting thrush and things like that. But I just didn't believe it.
SEMBER: So what--so they came to you and they said the test is positive.
SANDOVAL: It takes three weeks, as you know. So when I got the test after threeweeks, and I found out I was positive, I went to Harlem, I went to Brooklyn, 87:00where the hell did I go? I think I went into Queens, somewhere on something Boulevard, and got tested. I couldn't believe it. Everything came back positive. I just couldn't believe that this would happen to me. Yet, a part of me knew that I was positive already.
RODRIGUEZ: Because he didn't think that he could get AIDS 'cause he wasn't gay.
SANDOVAL: I didn't hang around street corners with all these guys, swipingbatteries, you like things like--a whole lotta--
RODRIGUEZ: It was like, it was like you know.
SANDOVAL: --bad person, yeah. Only bad people got AIDS.
RODRIGUEZ: It was really, I think people know more about AIDS now than they didback then. So I guess, at one time, they stereotyped it into, like, only the gay people got AIDS--
SANDOVAL: Are you cold? Do you wanna go ins--?
SEMBER: No, I'm okay. I'm fine.
RODRIGUEZ: --and stuff like that. I think he had a hard time accepting itbecause of that. Because you must have had signs telling you there was something 88:00wrong with your body.
SANDOVAL: It was a very--I had the symptoms earlier on, but like I said,sometimes when they ask me I can't answer that, because it was a very confusing time. Half of me knew that I was positive, the other half didn't. The other half-- it was like, a lot of denial, and at the same time I knew that I had AIDS, I knew that I contracted the disease, I knew that I was.
SEMBER: How was that? There was that--That initial period was full of thesetimes in psychiatric wards and all of those responses, how has that been since then? After you came off the drugs and, uh…
SANDOVAL: I want to sometimes make believe these things never happened; thatperiod never happened. I want to forget about it. To be honest with you, I'm talking with you about it. I don't normally come forth about that stage in my 89:00life. I completely avoid it, or I kind of put it in with something else when they interview me or they talk to me. It's painful sometimes to talk about that. And it still is, today, it's like the open wound.
SEMBER: What thoughts of suicide? I mean at the time?
SANDOVAL: I did attempt a suicide. I took all--lots of Benadryl and lots of wineand I was on a respirator, I think.
RODRIGUEZ: He was on a respirator, and we didn't think he was going to pull through.
SANDOVAL: I just didn't want to live no more. Everything was happening so fast,everything was so confusing, I couldn't grasp what was happening to me. I just couldn't understand what was going on with me. I couldn't keep a step--
RODRIGUEZ: He did but he just wasn't successful. He wasn't successful, but hetried, you know. He meant to kill himself. But for some reason somebody always was there, or whatever. 90:00
SANDOVAL: I couldn't, like, I just couldn't get enough tranquility. It was,like, everything was going from bad to worse. There was no reason for me to live, at that time. There was really absolutely no reason. I thought that was the noble thing to do. Yeah.
SEMBER: Was the--I don't know--This feels like a difficult question to ask forthis. [unintelligible] doing drugs and you were still sexually involved. What did you think about what was going to happen. Were you sharing needles at that time?
SANDOVAL: Yeah. When I found out that I was positive, after I found out?
SEMBER: You knew that you were positive.
SANDOVAL: No, I didn't. [Interview interrupted.] but you're not--I don't know. I91:00can't explain it. It's really hard to explain.
RODRIGUEZ: But most of the guys that he was with, a lot of them were positivealso. A lot of the guys that he hung with were HIV also.
SANDOVAL: Those that are no longer a person anymore, foreign, man. I felt alone.
SEMBER: Were you still living with that woman?
RODRIGUEZ: On and off, you were. She's a [unintelligible].
SANDOVAL: On and off. Very traumatic. She wasn't very supportive. She wasn't toobright, to be honest with you. It's like, there was no, the reason I put the thing to torch, was that I made a big investment in that place, and this woman tried to take me for a ride, so I kinda fucked her.
SEMBER: Did you continue having protected sex?
SANDOVAL: Well, I didn't have sex after that for a long time. When I did resume92:00a sexual life, yeah, I had protected sex. Yeah. I couldn't--you know, it's like--I didn't pass any works around, because I wasn't really associated with people no more. I felt like I was an island, all by myself, isolated. "Help," I'm saying, "Help, help." And nobody could do anything for me. I was disintegrating. There were people there who wanted to help me, but I just couldn't grasp it.
SEMBER: You mentioned part of this process of getting out of that, and beginningto become this person that your sister has described [unintelligible].
SANDOVAL: Beyond AIDS. AIDS is a part of the problems that I was going through.I'm talking about drug addiction, I'm talking about a lot of things from the past that came back to haunt me. It's multiple things that just exploded in one--it seems like in one month, seems like two months, in the same period of 93:00time. AIDS is just one of them.
SEMBER: And then you started becoming involved in doing things like talking tokids, going to GMHC.
SANDOVAL: Gradually. I had to get my ass together, first. It took a long timefor me to come to terms that I'm an addict. It took a while to come to terms with AIDS and all that. Like I said, it didn't happen overnight. I was dealing with a lot of people of different cultures, different sexual preferences, it took gradual steps, but I'm glad that they happened the way they happened. Because I'm beginning to really know me. I found out one thing, that I'm not a bad guy. I never was a bad person.
SEMBER: What does it feel like, to hear him say that? "I'm not a bad guy."
RODRIGUEZ: When? I never thought he was.
SANDOVAL: I always thought I was. I'm not.94:00
SEMBER: But after seeing him be so low, after seeing him really being so devastated?
RODRIGUEZ: I always connected that with the fact that he was dying, that he wassick, that he had this disease. I always felt this was his way of showing anger. They say you go through different stages when you find out you're dying, whether it's from cancer or whatever. You go through different stages. And I always felt that this was one stage. From this stage he was going to go to the acceptance, he was going to eventually accept this disease. And that's what happened. But I didn't hate him for it. I just felt, in the end, when everything happened in my mother's house and everything, I felt frustrated, like, God, all this time I'm telling my mother, this, this, "Why are you talking like that, why are you worried? He's not gonna do this." At that point, I think I almost gave up. At 95:00that point, I think I almost gave up, and he was hospitalized and we went to see him and we spoke with the therapist, I spoke to the therapist, we had sort of like a group thing, this and that. And eventually he started coming around, but I never felt he was a bad person. There are bad people in this world; he wasn't one of those bad people. I never thought of him, like that.
SEMBER: In the work that you've been doing, the education work --what is it?You've been doing education, and you've been involved with ACT UP [unintelligible].
SANDOVAL: Yeah. ACT UP was mostly a protest on the part of quicker release ofcertain drugs, AIDS discrimination, and things like that with ACT UP. What community activism came out, that we got involved in this needle exchange thing, 96:00ACT UP has it, but we kind of almost got one started in Brooklyn, and it had nothing to do with ACT UP. We would ask them for certain things. It's funny, because the 72nd precinct, when we first started distributing the syringes, the cop car pulls in front of us, and he said, "What the hell are you doing?" We told him, "We've got syringes," and whatnot. They said, "You can't do this." They called up the precinct and the precinct said, "Don't touch them syringes and bah." And they told the two cops to get out of the area. We told the guy, "We want to arrest you when you come back." They came around again, we were still there. We freaked them--you should have seen the expression on their faces. They were freaked out. ACT UP, you know, has their needle exchange, and no judge is going to convict anyone for doing this. They're not. Even New Jersey's overturning these needle things. So this is-- 97:00
RODRIGUEZ: My brother was very active for a long time, even as far as goingto--where you got very sick. Albany?
SANDOVAL: Yeah. In Albany, I got very ill up there.
RODRIGUEZ: He was going to be a speaker at this convention.
SANDOVAL: At the AIDS--I forgot what the hell it was. One Community, One Voice,it was sponsored mainly by the AIDS Institute. I don't know if you remember that. Well, I got very ill up there.
RODRIGUEZ: He was there. And he got very, very sick. He was very ill; he endedup in the hospital over there. And the people were very good in that hospital, you said they showed a lot of concern. And we didn't know, we wanted to get him to New York, but we couldn't get him to New York because he was too sick, and then at the same time, what if something happened to him there. It was a whole big commotion. But we had people over here and people over there pulling for him. Eventually they brought him here and they put him in a hospital. But he was 98:00so sick when he left, and I kept saying, "Willie, I don't know, man. Are you well enough to go? Are you sure, are you sure?"
SANDOVAL: I feel that I can't stop fighting, you know? Sometimes I'm real illand I feel I have to go to these--
RODRIGUEZ: The day after he got there, he got very, very sick, very sick. At themeeting you got sick, right? There was a doctor there?
SANDOVAL: As a matter of fact, after I exchanged a few words with the governor,he goes like this, he goes, "Well, you know, National Health Care, we're trying to, blah, we do more, New York does more for people with AIDS than any other states." I told him, "It's not enough, how could you just run down figures? It's not enough? Do more." And things like that. But I was very ill, so I couldn't attend a lot of meetings with him. And what happened, I don't know, I talk and I kind of lose what I'm saying. But anyway, I got very ill up there, and I was 99:00supposed to be one of the speakers. But getting back into Brooklyn here, we started off. We have our own group now, called Vocal, because they're more sensitive to the Latino community, and one of the things we're going to do is have a AIDS in Brooklyn march, like a memorial type thing and whatnot. Our own walk, you know, so to speak. So we got involved in that. The needle exchange thing in Brooklyn was scrapped, because of finances. We just couldn't come up with the money.
SEMBER: Do you think there are issues in Brooklyn that are particular toBrooklyn, that need to be dealt with?
SANDOVAL: Yeah. We're like in the boondocks. We don't have--everything comesfrom Manhattan, right? Everything comes from the city. Brooklyn has a large 100:00Hispanic population that just exploded with AIDS, and they have to go for, like the people that come for AIDS education are usually from the Hispanic AIDS Forum, from the Latino activists, everything comes from Manhattan. We're not such as progressive as we think we are here. Take, for instance, I'm sure this still goes on, in maybe hospitals, maybe certain doctors don't want to deal with certain people with HIV, with certain illnesses. Housing is still a problem. If they know that you're HIV positive, a lot of them will still evict you for other reasons. Yet Brooklyn doesn't have something like ACT UP who would protest these things, and fight against these kinds of things that happen. That's a big 101:00difference. We're like ethnic neighborhoods where people usually stay to themselves.
SEMBER: As a member of the Latino community, how does that provoke issues thatare kind of different? We know something about that, but what has been your experience?
SANDOVAL: Sometimes I get like a little, among my own people, and activists, Idon't see such a big difference in the Latino and Black AIDS, Latino and White thing. I don't know where it's coming from that they, that they--This is a disease that we're all fighting together. I don't see, I don't believe, I think it's a lot of hogwash that they're neglecting us over Whites. That's a lot of 102:00bullshit. I really believe it's true. It's a lot of bullshit. I mean AIDS is AIDS, man. I don't think any group is getting any preferences. Now, if you have private insurance, there are certain doctors that are going to see good insurance, private doctors, they'll accept it over Medicaid. Not because you're a Latino or anything like that. But AIDS is something that is running very high disappropriately--How would you say that word?
SANDOVAL: --Disproportionately in our neighborhood, right? The reason for thatis that lots of people, Latino communities, got the message very late. You know, they don't believe it's going to happen to them. You go to these clubs, these small Latino clubs, you hear this a lot, "Well, he doesn't look like he has 103:00AIDS." It's just another belief that--It's not anything that the--
RODRIGUEZ: What is a person with AIDS supposed to look like? I still hear this,even today, "Well, he doesn't look like he has AIDS." Well, how is a person with AIDS supposed to look?
SANDOVAL: Yeah. It's not that there's a conspiracy against us.
RODRIGUEZ: Is he supposed to look like a leper, or something? You know what Imean? I think it's just a lot of ignorance and a lot of
SANDOVAL: Ignorance. The poorer the people, the more susceptible you are todisease, not only AIDS but to tuberculosis, to anemia, babies that are born in our communities are usually malnourished, because a lot of these mothers don't know how to prepare meals or care for themselves. Not because--that's why when you ask me about it, Latinos and AIDS, it's not because the people decided to have something against us, or maybe, I don't believe that shit. I just can't accept that.
SEMBER: So this ignorance, you start going to school and talking with the kids.104:00
SANDOVAL: I'm not going to tell them that there's a conspiracy because thereisn't. I don't see anything.
RODRIGUEZ: What was it that that kid told you when you spoke at one school abouthow there's nothing wrong with smoking pot or something? Remember when you were talking about drugs and stuff like that?
SANDOVAL: Most kids will say, "What's wrong with smoking a joint and all that?"And I kind of give them a history of how these things started for a lot of people, and it started off with that. A lot of kids, I would hear people say, "They're smarter than what we were." That's a lot of shit; kids are no smarter than they were years ago. They still don't believe they can come down with a serious illness. They still think they're invincible.
RODRIGUEZ: And they still don't think they can get it through sex. A lot of kidsstill don't think they can get it through sex, and that's a fact.
SANDOVAL: They think it's older guys who get it?
RODRIGUEZ: What's wrong with these teenagers, who think they can't get it105:00through having sex? They think you have to be either a homosexual or an IV drug user. They don't stop to think for a minute that maybe this person went with an IV drug user and has HIV, and you slept with this guy just because he's a normal looking person that doesn't have a history of homosexuality and drugs? It's incredible the way a lot of these kids don't think they can get it through sex. And I don't think there is enough, I feel there's not enough, personally, on TV, enough programs to let these kids see, put some teenagers on TV instead of all these stupid shows they have, 16-and 17-year olds, 18-and 19-years old, teenagers, put them on the TV and let them say that they're HIV and how they got it through sex. Or have more programs in the schools. A lot of these kids don't think they can get AIDS like that. That's what I find so baffling. Today, 106:00everybody knows how you can get AIDS. A lot of these kids don't think they can get it through sex, and they're still having sex at an early age; unprotected sex.
SEMBER: How did it start that you started going to schools, that you starteddoing all this stuff?
SANDOVAL: I was asked, because obviously they weren't going to let certainpeople go into schools. One of them was people from ACT UP. People feared us. They said, "There go them guys again."
RODRIGUEZ: Remember the PTAs? At one school, that PTA was against having him go?
SANDOVAL: They freaked out.
SEMBER: Why? HIV? [unintelligible]
SANDOVAL: They wanted somebody to speak on HIV, but not a person with HIV. Ikind of snuck in on one event. Certain languages were not to be used.
RODRIGUEZ: Because--They didn't want him to use certain words. You know, he hadto keep it--
SANDOVAL: I made people gasp.
SEMBER: Could you tell me a story about that?107:00
SANDOVAL: I promised to certain people. This was one of the first times Istarted doing this type of work, speak at an auditorium, at a place in a school. But I promised not to use certain language.
SEMBER: Like what?
SANDOVAL: Like, you know when you give the people head and things like this? Wewere supposed to say "Oral intercourse." The kids are laughing. [laughter] He doesn't know how to say, "Suck my dick and things." That's the way kids are. The girls just asked me questions. At first I was floored, because obviously I haven't been a teenager in a long time. They said, "What if I suck my boyfriend's dick, will I get AIDS?" That's the way they talk. This is how they communicate. So, "Don't use this." First of all, they didn't know that I was HIV positive, so I said, "I got a surprise for you, baby." So when I went up in the 108:00auditorium, and I started talking like that, first of all, I said, "How many people here know someone who has AIDS? Do I look like I have it?" "Of course not. How silly, you don't have AIDS." And I told them. And then kids started saying, I started asking them, "How many of you think that you can get it by giving head and things like that?" The people in the back, man, they went like--they couldn't believe I was talking like that. They didn't know whether to pull me off the podium, they were discussing, they was a lot of flurry of activity in the back about how I was talking, you know? And what happened was they didn't stop me. I kept on; the kids came over very well, because I used a certain language that they understood. I communicated with them. Not with something that was bull, you know. That caused quite a thing; we had a laugh for a while, some people's heads rolled. It wasn't mine, that's for sure. Because of 109:00other--there were some parents there that resented the way I spoke. But this is the way your children speak. They don't speak like that, they're not going to go into your house and say, "Well, Mom, you know--" but that's the way a lot of kids speak. That was pretty fun in the earlier years, because after a while I started doing it with this Christian group, and they were getting into the schools with no problem, so I kind of wound down on a lot of things. Even Dr. D's, yeah.
RODRIGUEZ: And even Dr. D's mother, remember? You did something for her, shesent you--He's gotten beautiful letters from different organizations and schools and people have written to him about how they were grateful that he spoke, and things like that.
SANDOVAL: Me and my doctor went on this speaking thing with students, it was110:00pretty interesting because it was a patient and doctor that was there in the class, and he would give the medical and I would give the other, another side of it, of HIV. And I had to learn, earlier on, how to kind of, I was getting really--my mouth was really starting a lot of controversy so a lot of people said, "I understand what you say, but you've got to kind of wind down a little over here, you're really starting--I floored people. I floored a lot of people.
RODRIGUEZ: I think there should be more programs, in the junior high schools, Ithink up as far as junior high and high school, I think they have to have more programs and more people talking to these kids, because I don't think these kids are listening to their parents or to their teachers.
SANDOVAL: They don't listen to certain things. They laugh at you. You should seecertain people that go into schools; these kids have a field day with them. They don't talk like these kids talk. When I spoke to a group of little kids one 111:00times about drugs and prison, and whatnot, some of these kids, I told them, some of these people in prison actually get raped; they get gang raped by 40 or 50 men at one time. They get beat up, they get handcuffed, they put their polishes on them and all of that. They brutalize these young kids.
RODRIGUEZ: And he said all of this when he went.
SANDOVAL: And these kids, a lot of times people say, "Don't tell them that." Whynot? This is what happens behind bars. And if your parents don't send you money for cigarettes, they'll bust your head wide open or something like that. These are things they should know.
SEMBER: You spoke, when we were beginning to talk, about how people had beenreally incredibly unpleasant to you at times. I mean you've experienced [unintelligible]. 112:00
SANDOVAL: Earlier on, yeah. One thing, I called this woman a fat pig. And Idon't talk to people that way, it just came out. She was taking my blood out, and they had these certain markers on the blood work. So she goes like this, "Put on this mask and turn your head and don't breathe on me. You know and here she is, she's a blood technician. What the hell was she doing working there? I also had incidents where I was supposed to sign some papers and when I did sign it, after I finished signing these papers, I had people take the pen and kind of shove the pen that I used, or the pencil, in the trash can. Or the seats were 113:00wiped off, after I got up. Sprayed with chemicals and things like that. Earlier on, these things, people would say, "Don't go in that room, he has AIDS." Like I said, that hurts more than having the disease, because it's real deep down inside. At one time I didn't know how to handle these situations, but now it's--I don't know--I don't see it, feel it, it doesn't really happen to me a lot. I guess it's the way I conduct myself, the way I carry myself. It happens a lot, but it's just, just--
RODRIGUEZ: There are still people, though, that are like that. Because I have afriend at work who's got a nephew who has it, and one of the aunts was very upset because she had kissed him at Christmastime, and she said, "Oh, my god, I kissed him at Christmas, am I going to get AIDS?" And she really believe she was 114:00going to get AIDS, and from that day on, she was never, this was her nephew, she would never give him a kiss, a greeting kiss, she wouldn't shake his hand, she stayed totally away from him because she thought that she would actually get the disease because she kissed him six months prior to this on the cheek. And people really believe that, and I don't care what you say, or how many books you put it in, and how many papers you put it in, these people absolutely do not believe they're not going to get AIDS like that. People really believe they can get sick that way. Why do you think, if he's living here in my house, the only people that know that he's sick are just certain people, a few people in my job. My close friends, and the fact that he lives in my house. My close friends, because you work in an office and people talk about AIDS and stuff like that, and it's incredible, the reactions.
SANDOVAL: Just listen, yeah.
RODRIGUEZ: Listening to these people, I said, "How could I ever tell these115:00ignorant, stupid people that my brother has this disease?" He's living with me; they'll think I'm contagious. So to avoid having to deal with the stupid ignorance, I just kept it--'cause I'm not ashamed that my brother has AIDS. Not at all, because he has AIDS and there are millions of other people that have AIDS right alongside him. So I don't feel any shame in that. I just felt that at this point I could only confide in people I was close to because they were more sympathetic towards it, and they understood, and they knew that you couldn't get AIDS by kissing somebody or having somebody live in your house.
SANDOVAL: As a matter of fact, people in her job were very, very helpful towardsus. I was really surprised with the Christmas, the toys, the quilts.
RODRIGUEZ: Yeah, my supervisor arranges for Christmas parties at thediscipleship every year, all these kids they get every toy under the sun, the fire department, the police, everybody contributes toys. But it's only certain 116:00people. I wouldn't tell anybody else, because you hear people telling jokes about AIDS, jokes, jokes. It's like, I want to just scream sometimes, but I just like, don't tell me jokes about something like that. I don't like jokes about diseases. Don't tell me any jokes about diseases. I think it's horrible, these stupid jokes that go around.
SANDOVAL: Now that you say that, I was listening to some jokes. You know what Idid? I got into it too. I said, "What do you call a guy with AIDS on a wheelchair?" "What?" "Rolaids." "What do people with AIDS drink in the summertime?" "Kool-Aid's, of course." So we were laughing. I found myself joking on it, too. I found out later on that I had AIDS, I could imagine, they probably went nuts, "This guy's crazy, he was in there joking with us." But it hurts, though, when it's done in a bad--yeah.
RODRIGUEZ: Especially when you know somebody, it hurts. I'm not really that,those kinds of jokes, any kind of disease, not only AIDS, jokes about anything. 117:00I mean, they had jokes about the riots in Los Angeles. That was horrible seeing all that. You joke about people being killed in the streets? It's just, people are like that, that's why I'd rather just not have to deal with it, so I have only a few people that know that he's sick and he's living with me, because I know that people at work, they're very odd. These people are real old fashioned Italian people that are like, just [unintelligible].
SANDOVAL: That's the thing, if they don't know I have the disease, like I wastelling them at the church, most of them are Norwegian. They're blonde-headed people. It's funny because a lot of them didn't know how to approach me, and I'd just be "Yeah, all right--" and they admit that, as a regular person, I don't know what people expect from people with AIDS, but I am a regular person. And that's the way--
RODRIGUEZ: I think they have a picture of people with AIDS, you know how some118:00people get that skin cancer [unintelligible].
SANDOVAL: Oh, Kaposi's Sarcoma, yeah, KP.
RODRIGUEZ: That they have all those spots all over their body, they think allAIDS people get that, they think that if you have AIDS you're going to look like that. That's the picture they have of people. See, if don't know about something, I'll study it, I'll read it, I don't want to be ignorant. I was very ignorant of this disease until he got it and then I read about it, but I think if more people were to do that, they would know more. Even, like, my own father, at one point, not that he's been a part of our life at all, he hasn't been, but at one point he was in the mental hospital and they wanted to release him and the doctor had called him to see if he could spend time with him, and at first he said yes, and then he said no, and his reasoning was that if he could AIDS from him. And no matter what I told him, no matter how much I explained it to 119:00him, he couldn't comprehend. Now he calls me one day and he's telling me, "Oh, you can't get AIDS with this and with that." What the hell did I try to tell you for so long? I spoke to you until I was blue and you couldn't comprehend, and now? In the senior citizens' center you found out this is--what I told you was true? Why are people the way they are? I don't understand that. It's, like, do they want to stay ignorant and not know what's going on? Is it better for them to be that way? I think it's better for people to know about AIDS, especially now when so many people are touched by it in one way or another. Somebody has a friend or a relative, or knows somebody.
SANDOVAL: Everybody knows someone, at least, now.
RODRIGUEZ: To me, it's like having cancer, the same thing.
SEMBER: Is there something you think the government should do that it hasn'tbeen doing?
SANDOVAL: It's going to take moolah, lotta moolah. Why have all these120:00researchers all over the world?
RODRIGUEZ: What should they do, he said? What should the government do? Money,of course, money, but what should they do? For more research, I think, for more research.
SANDOVAL: What should they do? Of course, with more money, it makes more senseto know what John is doing is Paris, and what this guy is doing in Canada, they don't have any kind of network. They don't have networking, they really don't. What the other person is up to. It's going to take a lot of money, it's going to take a lot of, uh--To be honest with you, I don't know, at this point, I don't know if there's much they can do. The epidemic really reached this point where, not only is it worldwide, but--
RODRIGUEZ: More education. They can spend millions putting a stupid capsule intospace or making a piece that's going to do something, but doesn't even work once it's up there, they could spend millions and millions on things like that. 121:00They're not spending enough on AIDS. Do you know what my brother feels? Prevention. Nevermind. Prevention is where they should invest more money. Prevention is cheaper than treatment. Treatment is very costly, very expensive. Prevention is a lot cheaper. Why not focus on prevention? with the kids that are coming up, and focus on these kids, and focus on this, and teach them and educate them so that they don't end up later on in life with the government or whatever spending, thousands, a lot of money on these kids, trying to treat them for this disease.
SANDOVAL: Like the FDA, right? They shelve drugs for at least 10 or 11, 8, 9years before these things are approved. I mean, we have an epidemic here that's really gotten out of hand years ago. We can't wait. We have to have some kind of 122:00a way to release these drugs earlier on, to make it affordable. Right now, it's no secret, even me as an activist knows, there is no money. Medicaid is in a lot of damn trouble. There's no money. Make a little cheaper. Regulate prices of drugs, because they're really outrageous, where it can be in reach of everyone, not just certain people. National healthcare is number one priority. This AIDS crisis has proven that we need national healthcare system. That's all there is to it. All these scientists and these researchers, they're working so far apart. Information is not--they're not networking. It makes more sense to really 123:00network and let the other person know what the other person is doing.
RODRIGUEZ: And why does it have to take years, and why does it have to be FDAapproved? If my brother decides that he wants this drug, so it's not FDA approved, but he doesn't have any choices, why does he have to wait another 2 years? He's dead already. If he wants to let them experiment on him with a particular drug, and then if he volunteers, why can't he?
SANDOVAL: It's what we call "trial runs," you know. Maybe speed up certain trialruns and side effects, come on, I have AIDS. If I get a side effect, a very severe one, I get cut, take the medication away. I've gotten to the point where it makes you kind of paranoid, you say, "Wait a minute, who's going to profit behind this?" Who's really going to profit behind this?
RODRIGUEZ: And why are some of those drugs so out of reach for a lot of people?124:00Why are they so expensive?
SANDOVAL: We have a lot of whys. This is what you said; the government, theyhave to be involved in it more.
RODRIGUEZ: It doesn't cost that much to make these drugs. Why are they soexpensive? Somebody is making money on this, obviously. And it's not the people that are needing this.
SANDOVAL: They're drug companies. They're a profit-generated thing. This is acapitalist society. But goddamn man, don't let me just sit back and die because of lack of funds. That's more of less what the Nazis did with the--That's genocide, man. So the government has to share some kind of responsi--. I'm not going to put all the blame on them, because that's not the way to go. But they have to share some kind of responsibility in the AIDS crisis.
SEMBER: If there was something that you would like to see specifically happen inSouth Brooklyn, in response to the AIDS crisis --
SANDOVAL: I would to see AIDS--Adios, AIDS virus, go. But, in response to the125:00AIDS crisis in South Brooklyn, first of all, I think the first step in really slowing down the AIDS virus, in the gay community it has slowed down a lot, because they smartened up. In the drug community it has been escalating, if anything. I would like to see, in South Brooklyn, these guys really get some fucking heavy time in prison. There's definitely a connection between drug sales, drug use and AIDS, okay? I would like to see that change. I would like to see more education in schools. I mean, we need treatment, we need release of new medications, drug trials of new medications. Like my sister was saying, more AIDS education in schools. These kids need to know what the hell is--You need to you just can't tell them for one year or two years and walk away from them. 126:00They've got to be drilled and make this is a curriculum thing, not only because of AIDS. It's because of syphilis. There's other venereal diseases. AIDS is just a part of it. That's what I would like to see in Southern Brooklyn. We have a drug problem that's devastating our community.
RODRIGUEZ: A very bad drug problem, and not enough of these drugdealers--they're being caught with lots of drugs on them and they're getting out too quickly.
SANDOVAL: Too fast, man, I can't believe what they--
RODRIGUEZ: They're back on the streets, back to dealing, and they have all thismoney, and they're back in jail and they let them out, and it's just a cycle. These people never do any time, and they're the ones that are putting all the drugs out into the street, and eventually that's how a lot of people are passing AIDS, through the works. They share the works.
SANDOVAL: There's definitely a connection there.
RODRIGUEZ: That's how a lot of it is being passed. The kids are starting at avery young age.
SANDOVAL: I would like to see, also, more housing for--there's a big problem. We127:00don't see it because we don't know who's HIV positive, but a lot of people who are HIV, because they're home--They don't have any family.
RODRIGUEZ: They're homeless. They're in the street. There's no place for them togo, there's really--like he's lucky that he has his family. But I feel bad for a lot of people that don't have their family, and are out, they don't have something hot to eat, and they don't have a roof over their heads.
SANDOVAL: They die. They just die.
RODRIGUEZ: They die in the street and it's very sad. Very sad, and there's justnot enough housing.I think there should be more housing for them in Sunset Park, where these people could go and get into programs, and try to get whatever is left of their life together. And there's really no place, because my brother had no place to go. He had no place but the hospice, there was really no place that he can go.
SANDOVAL: It would have been nice if I'd had a Section 8 or walk-in clinic,128:00where I can feel independent.
RODRIGUEZ: A place where they have a lot of other people like him, living inthese buildings, where basically they just help each other and stuff like that. But basically there's nothing. They have places where women can go if they're battered, they have places where kids can go if they're homeless. There's really no place for them to go if they have AIDS.
SANDOVAL: Are you familiar with Tom McGovern? The photographer? I think he'sgoing to do some photographs.
SEMBER: He's the guy who took the photographs. I don't know him, no.
RODRIGUEZ: He's been following my brother for years with photographs. He'staking the, the--He's artist in the sense that he's showing the face of AIDS, the faces of AIDS, with his photography. And he's followed my brother for many years. In fact, he's going to do something here with us. We're going to have sort of a family picnic, and he's going to come and sort of just take pictures. He wants to show a different side, not a gay person who lives in Manhattan who 129:00has AIDS. He wants to show a heterosexual person who lives in Brooklyn who has AIDS. This way they know, hey, there are other people besides gay people who get AIDS. And he's also going to be with my brother when he's, towards the very end of his disease.
SANDOVAL: We became close. We started off as one thing, and then we became good friends.
RODRIGUEZ: My brother gave him permission to take his picture right up until theend, he'll be taking photographs of my brother.
SEMBER: I have two quick questions; two more. If there's one thing you wouldlike to say to people who come to this exhibition? It's an exhibition that is going to take place maybe at the end of this year, maybe the beginning of next year. Maybe you won't be here, but there's going to be a way in which you can say something to people there.
SANDOVAL: Yeah, come to Brooklyn, invest in Brooklyn. We need the jobs. Hey, thegreatest place on earth to live, it's right underneath your nose. Believe me, 130:00Willie told you that. I remember that, and I'm not going to be seeing you. Sure, I would like to--I'm serious, you can put that down, too. Come to Brooklyn, it's a nice place to be. The question was, again?
SEMBER: Something you would like to say to people who come to this exhibition.There's one thing [unintelligible].
SANDOVAL: People like--I'm human, man. I'm still me. I think I said somethingbefore, that, uh--Not really. I don't know what to say. All I say is, I'm still a person, man. I'm not going to bite you. I'm a good guy, I'm not going to pick your pocket or anything like that. But I have feelings and whatnot. And sometimes it seems that AIDS is seen as so out of place in Brooklyn, like it 131:00doesn't belong here. It doesn't belong anywhere, but moreso here. I don't know what to say. I really don't know what to say, on that part.
SEMBER: What do you think is going to happen in the next four years?
SANDOVAL: In the next four years, for me? Well, I'm going to push for the fouryears. I'm always striving, probably to be--I want to be a better person tomorrow than I was last year. I want to be a better father. I want to learn more. I want to get healthier. I really would like to go back to work. I don't want to do, I'm not gonna do anything--I could never do what I used to do before, which was working with my hands, maintenance. But I would like to do something where I have human contact with people, to give of myself.
RODRIGUEZ: I think he would be great as an HIV counselor.132:00
SANDOVAL: If the epidemic is over, seeing as I get cured, I would never go backto doing what I was doing. I think I'll always strive to be a better person and make my surroundings a better place to live in. Not only in Brooklyn, but just do my part as a person, to make the world a little better, I think. There's not enough of that going on.
SEMBER: This makes me sort of think, you said this as well. You were talkingabout how, because of HIV, you've gotten off drugs. And you were talking about how you feel Willie has really learned a lot from this, and have become this just remarkable person. And I remember you saying earlier on that there's just no way that any of that good stuff, that you wanted to say, "AIDS has been good." But have good things come out of this?
SANDOVAL: It hasn't been good. But it has that's kind of a hard thing to answer,133:00because I hate the virus. I would never give in to it to say, because of this--but it's caused me to really think about my life. Who am I? What's going on with me? It has made me think about things that I've never thought of before. The human life value, the value of human life. The importance of making the surroundings better, and whatnot. A lot of people say that the world is all fucked up. No, it's not. We make it fucked up. The world is a good place. It's what we make it. And I think I contributed to making it a not such a nice place, you know?
RODRIGUEZ: At one time. He's not that person anymore. He's completely different.
SANDOVAL: But to the people over there, I don't know, for whatever reasons that134:00they go over there, but people with AIDS are still people. We have feelings, man. And one thing we don't need from you, it's bad enough that we're struggling to survive on a daily basis to stay alive, we don't need people to mistreat us and hurt us way deep inside, man. That's a cruel and a vicious thing, you know. We just try to get what we can out of life.
SEMBER: Rita, what do you think is going to happen? What do you imagine in thenext four years?
RODRIGUEZ: In the next four years? I think that, I think I'm pretty optimistic.I don't know if my brother's going to be here in the next four years. I'm not optimistic about that. But I am optimistic about the fact that I think the people that get AIDS now, or let's say in the next four years-- 135:00
SANDOVAL: There will be a lot of progress.
RODRIGUEZ: --there's going to be a lot more progress and they're going to have alonger life and they're going to have a better chance of surviving this virus. I think that my brother, being sick at this time, is also, in a way it was good, if he had to get this disease, that he got it now. Not in 1982, because we know somebody who died in 1982, which was my niece's father. When he was very sick with this disease in '82, you know how people felt about the disease.
SANDOVAL: I told him about it. In '81, '82, I didn't go to the hospital to seehim. I went as far as to Lincoln, but I didn't go upstairs.
RODRIGUEZ: And also, when the ambulance came to pick him up, the neighbors hadto bring him out of the building in a stretcher, because the attendants would not touch him, in 1982. And this was a man that was dying. So the fact that he 136:00is sick with this disease now, I feel in a way grateful that he didn't get sick then, and I feel that the people that get sick now or in the next four years, it's going to be better for them, because I think that now, even though there's still a lot of ignorance, I think there are a lot of people that understand this disease more. And I think that progress is being made every day. I feel optimistic that--I don't think there's going to be a cure. That I don't believe. But I think it's going to get better for people with HIV. I mean, it cannot get worse. I can't see it getting worse. I can't see it going back to then, either.
SANDOVAL: There'll be progress. I know that there will be progress. If not, Idon't know if I'm compromising, but at least make it a manageable disease. Which 137:00would be good enough for me, for now. Just to stay alive. It's like, sometimes it's mind-boggling, the deaths already from HIV. There's a lot of stats that the CDC don't have. They're undercounting. I think it's pretty safe to double up on the figures. I know a couple of people who died, and their autopsy didn't come back AIDS-related, it was some other shit.
RODRIGUEZ: But I think there are so many more people involved, and so many moreprofessional people involved, and so active in different organizations, and it has touched the upper class, the rich. Everyone.
SANDOVAL: It has affected everyone. Look at Broadway and the fashion industry,it's completely devastated. These industries--
RODRIGUEZ: And all the artists--That's why I feel that progress is being made,138:00and I'm optimistic. I think that it's going to get better for people with HIV. [Interview interrupted.] anymore. He can't go to ACT UP, he can't go protesting somewhere, he can't end up in jail somewhere. Which he's done. He's gotten arrested.
SANDOVAL: I got arrested. Yeah. The last time was at the United Nations.
SEMBER: What happened there? You were doing a [unintelligible]
SANDOVAL: Well, at the United Nations, it was national healthcare. No, it wasdisaster relief and all that. It was a little far fetched, but the point is that we were going to make our point. So the police said, "Well, you can' t go. You have to stay up there, you protest up there." Which was about almost two blocks away, which was ridiculous. What kind of protest is that, in front of the United Nations? And they said, we can't go in front of the United Nations. All right. So we're standing there like this, and all of a sudden we all burst out in a run, and everyone started running down different blocks. And the cops got all 139:00confused, they didn't know what the hell we were up to. So we were having this mad dash for the post in front of the United Nations. It was so funny, the scene, because the cops and the protesters were running side by side, to see who gets down there first. They didn't expect us to burst out and come out running, running different ways down the block. We got there first, and they got very angry. So the cops came up to us and said, "Hey, go back across the street." And I told the cop, "No." They threw me on the floor and arrested me on the ground.
RODRIGUEZ: He ended up in jail. He spent the night.
SANDOVAL: I spent the night in jail. But these confrontations are the Day ofDesperation. I don't know if you remember the Day of Desperation, where almost, what was it? 250, almost 360 people got arrested throughout the city. The Day of Desperation was very, I mean, everything was being focused on Iraq. And we, 140:00again--I didn't get arrested that day, that day I had another bout of PCP. I knew I was very ill, but I was down there, and it was very emotional because it was, like, they couldn't come up with enough paddy wagons. Every time they would fill up a dozen paddy wagons, more people would run in the street and just lie there. One thing about ACT UP is that we always made our point. We always made our point, and we did a lot of exposing of lots of people, especially drug companies.
RODRIGUEZ: He's out of commission as far as--he can't do anything like thatanymore. I tell him, "You've got to leave that up to the other people that are healthier." He can't do anything like that. But while he was able to, he did as much as he could. He was very active.
SANDOVAL: I was happy. Content.141:00
RODRIGUEZ: He was running and running. Every time I turned around he was runningand doing something, organizing something. But now he just can't do it anymore, so he just--you know, takes it easy.
SANDOVAL: I call my friends from ACT UP. They call me every once in a while andI see what the progress is. It's amazing how, here I am, I'm a straight guy--
RODRIGUEZ: He goes to GMHC to get his hair cut, have lunch, pick up videotapesand theater tapes. He used to just go there and--
SANDOVAL: It's amazing how, like, I'm a straight man. And how far I went withACT UP and all that. Because I always thought ACT UP was all--there's a lot of straight people, not as much as, but there is a lot. I thought that I wasn't ever going to be able to deal, like with a gay person, and the complete opposite happened. It was never an issue. And I learned a lot, throughout the years of 142:00rage, I would say, of protest. Because believe me, we were in danger a lot of times, the police wanted to actually kick our asses, for no reason at all. They actually wanted to beat us. Actually beat the shit out of us for no reason at all. And you can feel it. We were constantly in danger of getting attacked. I think most of the time they didn't his us because they didn't want to get splashed with blood, or something. But these guys were out to get us, man. For some reason or another. I did what I had to do. I felt that if the virus was going to overcome me, and take me, you know what, Rob? I didn't go down without a good fight. It didn't take Willie boy down that easy, man. I felt that I 143:00was--Opt Out, I was involved in Opt Out, the condom thing at school. I had something to do with that. And I think sometimes, I had a lot to do with a lot of things, and I feel real proud and good about myself.
RODRIGUEZ: He's paid his dues more than 100 times over. I tell him, "You've morethan made up for whatever happened, over and over and over again." Because he's done more good that he's done in these few years, than he's done in his whole life. He made his points, and he has touched a lot of people and a lot of lives, so--
SANDOVAL: So I'll be looking forward to seeing this exhibit. I have photographs,if you want to take photographs, you can also do that. But I also have--to tag a face to it, you know?
SEMBER: Yes, this is another thing that you're doing. One of the things that I144:00want to do--Let me just--There are a couple--I'm gonna turn this off now.
Oral History Interview with William Sandoval, with Rita Rodriguez
When interviewed in 1992, Willie Sandoval was a forty-one year old Latino person with AIDS who became infected with the HIV virus through IV drug use. He was one of nine siblings (six sons and three daughters) who witnessed and was subjected to his father's frequent episodes of domestic violence and alcoholism. A resident of the Sunset Park neighborhood of Brooklyn as an adult, he was diagnosed in 1988 after being hospitalized for a series of illnesses and psychiatric episodes associated with AIDS. Sandoval then lived at his sister's home in the Kensington neighborhood of Brooklyn, but by 1992, he was often staying in the Lutheran Medical Center's AIDS ward. Sandoval worked with a number of organizations (ACT UP, Gay Men's Health Crisis, church and education groups) in which he was very active. This community and activist work had to be curtailed because of his health. Brooklyn, as a place to live and as a way of life, was very important to Sandoval. He died on September 26, 1992 of complications due to AIDS. His sister, Rita Rodriguez, was forty-three at the time of the interview, and moved out of Brooklyn in 1993.
In the interview, Willie Sandoval speaks of the spread of the epidemic through particular Brooklyn neighborhoods--mainly Sunset Park--with an insider's knowledge. His extensive experience in AIDS organizations make it possible for him to draw comparisons between Brooklyn and other parts of the city; ergo he makes some observations about the differences in attitude between Brooklyn and Manhattan physicians dealing with people with AIDS. Sandoval and Rita Rodriguez recall their difficult upbringing, Sandoval's descent into habitual drug abuse, the trauma he caused to family and how family has responded to his illness. They discuss how treatment can be improved and how awareness can address the stigma associated with the virus. 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.
CitationSandoval, William with Rita Rodriguez, Oral history interview conducted by Robert Sember, June 11, 1992, AIDS/Brooklyn Oral History Project collection, 1993.001.18; Brooklyn Historical Society.
- ACT UP New York (Organization)
- Gay Men's Health Crisis, Inc.
- Lutheran Hospital (Brooklyn, New York, N.Y.)
- Rodriguez, Rita
- Sandoval, William
- AIDS (Disease)
- AIDS activists
- Drug addiction
- Family life
- HIV infections
- HIV-positive persons
- Self-help groups
- Social group work
- Stigma (Social psychology)
- Brooklyn (New York, N.Y.)
- South Brooklyn (New York, N.Y.)
- Sunset Park (New York, N.Y.)
Finding AidAIDS/Brooklyn Oral History Project collection