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Luis Nieves Rosa
Oral history interview conducted by Robert Rosenberg
July 11, 1992
Call number: 1993.001.17
[This interview was transcribed from a videotape source in 1992. The first 260+words of interview transcript represent content that was not transferred from video to audiotape.]
ROSENBERG: Well, I'm going to just start with these questions. We can goanywhere else you want with them. But, why don't you talk about when you found out you were HIV positive, and how you found out?
NIEVES ROSA: Okay. I decided to be tested--
ROSENBERG: Wait a minute. Why don't you state what your name is and everything?
NIEVES ROSA: Okay. I'm Luis Nieves [unintelligible], I'm a Latino gay man, bornand raised in Puerto Rico. I'm thirty-three years old. I moved to New York in January, 1988, to pursue my master's degree here. I started it, I haven't finished it. Meanwhile, I started working as a case worker for a city hospital in an AIDS-designated area. While working there I got more aware of the things that a person can do to keep as healthy as possible when they decide to go to be tested. That was 1988. By October 1988 I decided to be tested, with mixed feelings in terms of how I, as a case worker, was giving hope to lots of my clients, in terms that at that moment I was perceiving myself--I have to do like a parenthesis here--Since 1985, I assumed that I was positive. I didn't want to take the test at that time; therefore, I started practicing safer sex and keeping myself as healthy as possible. Coming back to October, I decided to be tested. At the same time, while I was working with a lot of clients, from minority communities like African-Americans and Puerto Ricans, I was having AIDS happening in my home. This is directly related to a long-time friend, very [Audio commences here.] close friend, who was my roommate, who was showing symptoms like diarrhea, weakness (He was tired a lot of the time.), but working in the hospital was so overwhelming that when I was coming home I didn't notice for almost a year. I decided to go to be tested, because there were a lot of clinical trials going on, a lot of new things that you can do, and at that point I really understand what means to take control of your health. You need to do a good medical checkup, look to all the things you need to know that will be 1:00affected when you are HIV positive, to try to keep as healthy as possible. I decided to be tested, I would say that at the moment I didn't tell anybody, just my supervisor, because I got tested in the clinic where I was working, and the person who--obviously--did the test, who was a very close friend. She went wacko when she got the results back, and they were all very supportive at the clinic. Then, that day, I decided--I came back home, I called two of my closest friends; one who is living here in New York, I asked her to meet and to tell her about my results. The second one was living at that time (and is still living) in Puerto 2:00Rico. I had that need to tell him, to share this big thing, that I was positive, by telephone. I found out at that moment that even though I was an HIV counselor (part of my task at the hospital was to do pre-and post-counseling for people who decide to take the test, that you give all the information of what the test means and what you plan to do, what are your plans?), and at one moment I was feeling that that was easy for me, but nobody's in the shoes of the person who goes to take the test. I decided to take that right also. I think I have been very lucky, not like the majority people who go to be tested, because there is a 3:00sign, you know, people tried to get you tested to see if you are positive or negative, if that were--matters in terms of really you have a plan with your life, what to do. At that moment, when the result came back positive, I shared with these people, I got a lot of support from them and from my job. Then I start pushing my roommate, because I felt--At that point was like everything clicked to me. I said, "I have been so overwhelmed with my job," I was getting involved, this was another part of my life, with a gay group here in New York City (Boricua Gay and Lesbian Forum), that I was looking into that AIDS was happening in my home already, besides me being HIV positive. I started pushing 4:00him, I started pushing him, and he made a big deal of where to go to be tested; if he's anonymous, if the board of education found out, my insurance, all concerns that the majority of people have and that are true. But, there were ways, you know. He wasn't the average person, who did not know a person, who did not have a contact. I was like so sure that I could get him to get more than confidentiality (We could use another name in the clinic.), like happened with my test. The person who tested me kept forgetting who the hell is this guy? Because she used another name instead of mine. She kept forgetting. She denied 5:00so much; she didn't want me to be positive, that she kept forgetting who is this person? He decided to be tested in December, then he went on vacation to Puerto Rico. When he came back from the vacation he became weaker and weaker. I remember coming down from the airport, I had to take him to the hospital, he got a reaction to something that he ate. There, he used to eat a lot and it never gave him a reaction before. Obviously, his immune system wasn't that well. Then, he got the results in January, and by March 7, less than two months, he was diagnosed with PCP, that far it was. That was how I decided to be tested, to 6:00follow the question. [laughter] That was how I decided to be tested, but that same time, when my roommate was diagnosed with "PCP," I started on a trial on AZT for person who was HIV positive with 500 or more T-cells. I'm still in that file today. I have been with 500 T-cells or more than 500 (they went up to 800), they have been on an average of 600. Since then, I have gained weight, my doctor told me to be careful with cholesterol, which is one of the problems facing HIV 7:00positive people, that their cholesterol goes so low that they cannot get any back. My case is the opposite; I have to be careful, because I can die of a heart attack.
ROSENBERG: You're doing great, you told your story like--I have lots--I can askyou more questions. You just sort of--Yes, right. Just fine, you could talk about [unintelligible]--
NIEVES ROSA: Because I was trying to attach--It was easy to attach my job what Iwas doing--to get tested and Ramon. That was easy, that part. Since then, in terms of I come out positive, going to the treatment, taking care of myself, I 8:00have been healthy. I knew, since before I was practicing safer sex, and, and--
ROSENBERG: [laughter] They know that. I told them that. I will ask youquestions. I'm not sure where you were going, talking about safe sex--Before you knew you were HIV positive, you were assuming you were positive, and you were practicing safe sex.
NIEVES ROSA: Yes.
ROSENBERG: But, I remember, you didn't want to be tested, though. You wereagainst it. I remember personally.
NIEVES ROSA: Yes, and that was a change in position, in terms of my concern withgetting involved in the work I was doing in the HIV/AIDS field, in terms of 9:00getting the majority of information possible, and for the person to make the choice, during the stage when they can afford to have the test. It's not only that it's free, that it's anonymous, it's how you--if you have support, if you 're emotionally stable to handle that situation, if you have a plan with your life, how that positive result will affect that. It does not mean that postponing will postpone you getting sick, but it means that you're not going to be crazy with a positive result. Since that was like continue doing the work in the hospital, and then it was like a twenty-four hour, full-time job dealing 10:00with AIDS.
ROSENBERG: Can you say what hospital? Because it's a Brooklyn hospital--?
NIEVES ROSA: Yes, it was Woodhull Hospital, located in the Williamsburg-Bushwickarea, which is--The people who use that particular hospital are in majority Black or African-Americans, and Latinos, because this is public hospital. Okay.
ROSENBERG: [unintelligible] when I asked you that. Okay, um, well, I'm just sortof going to kind of follow these questions, but that's great. You can kind of tell a story like that, actually, it's fine. Do you want to talk about or are you willing to talk about how your sense of how you contracted the HI--the virus? If you feel comfortable-- 11:00
NIEVES ROSA: Obviously by sex. I'm a gay man, I have been very open since veryyoung. I came out when I was eighteen years old, when I moved to live with a lover. I moved from the town where I grew up, Arecibo, to San Juan, which is a metropolitan area, and I lived there from 1977 to 1987, ten years. If we notice, San Juan is the second city in all the United States with more AIDS cases per inhabitants. Yes, per inhabitants, no? Per people who live there. 12:00
ROSENBERG: Incidence, you mean? Incidence--[unintelligible] They have the nexthighest incidence.
NIEVES ROSA: After Washington, D.C., which tell us that AIDS was in Puerto Ricoby that time, or, who knows, before. What was the question again?
ROSENBERG: I asked you how--do you know how you contracted the virus?
NIEVES ROSA: Basically by that, by sex.
ROSENBERG: When did you start using--When did you start having protected sex?What was the process you went through to change your sexual practices? Before you knew you were positive, really.
NIEVES ROSA: Okay. Let me give you a little bit of history there.
ROSENBERG: [Spanish phrase.]13:00
NIEVES ROSA: Not necessarily. [laughter] I always was involved in a gay group,and by 1983 I was involved in this gay group that is called Colectivo de Concientización Gay from Puerto Rico, and at that time we hear about this gay disease. In 1983, in Puerto Rico, we were hearing about this gay disease, and I didn't believe. I didn't know that biologically we have forty-three chromosomes, the same as heterosexuals, there is nothing different that will make it easier to get an illness than any other person. However, we got more into contact of 14:00more information than came up, the HIV definition. We got into contact with the Department of Health in Puerto Rico to get more information, because we decided to take a role in terms of educating the gay community there. I was one of the coordinators of the activity, and I got into contact to the information and I got into contact to do a self-evaluation in terms that if all what they were saying on those risk factors; of having sex unprotected, anal sex, oral sex, I was at risk. If I had had sex with person who was an IV drug user, I was at risk. Then, I was increasing the ways of being at risk, therefore, at that 15:00moment, I asked, okay--they were going to implement the test in Puerto Rico in 1985--and I asked, "Okay, if I decide to go to be tested, what's the option if I come back positive?" "Use condoms and take care of yourself." If the test came back negative, "Use condoms and take care of yourself." Then, what I need to know? I need to assume I'm positive, because I didn't want--I was at a moment in my life; I was working part-time, trying to finish my bachelor's, in financial crisis that is, like, following me everywhere, and I decided not to work with 16:00that at that time, in my life. I think that's what a lot of people decide to do today; they have so many other problems in their life that AIDS is like another problem. That was how I got into contact with the AIDS. I assumed, by January, 1985, that I was positive, and that I was going to practice safer sex. I was practicing safer sex until, even, I decided to move over here, I continued to practice safer sex, and it wasn't until I got here that I got into contact that there were clinical trials going on. I decided, "Okay, let me do something," 17:00because now I can go into one of these clinical trials. I will try to read the most that I can about it and to make my own decisions. I think I was lucky, at least more than other Latinos who live here, who haven't had access to the information, more than Latinos who live in Puerto Rico--excuse me--the Puerto Ricans from the island. They just started clinical trials the other day.
NIEVES ROSA: Yes. That's how I decided to be tested, that's how I practicedsafer sex, that's how I assumed the responsibility to practice safer sex. It wasn't that difficult, you know. It's like to really learn to enjoy sex more, 18:00and focus less on certain activities.
ROSENBERG: You can be specific, don't worry about it. You answered all thequestions that I, uh--So, has your life changed in any other real specific ways, since you found out you were positive, and over the course of the last two years, and dealing with it in a more personal way? If any ways have specifically changed.
NIEVES ROSA: Well, really, I would say that AIDS came into the atmosphere of mylife, changed my life, I would say since 1985, when I started getting more in 19:00contact with AIDS. At that time, having had the experience of working with little gay groups in Puerto Rico, I asked them these, like, and other issues we need to deal with. I think I have become--It's true I have become more responsible with my life in terms of a--inhibit--stop using the recreate--any recreational drugs that before this we just used to do like every neighbor.
ROSENBERG: Every what? Vecinos.
NIEVES ROSA: Neighbor. Oh, in Spanish we'd say "any neighbor's son." [Spanish] I20:00would say that AIDS coming into the environment was what changed my life, more than the fact of having the test, because I assumed that before--always it struck you. For example, when my roommate passed away, even though I was prepared, I was there for him all the time, his mother came to live with us, because the last seven months I told him, you know, "You need to take care of yourself, we need to have somebody here, I can 't. I work. I have so many things to do." It was like--I handled the first year living twenty-four hours with 21:00AIDS, but the second year was too much. He was getting sicker.
ROSENBERG: And your first year of working in the hospital, you're saying?
NIEVES ROSA: Working in the hospital, plus, I work in the hospital since 1988,January-February 1988, through September 1989. The first year it was like no--Well, by December I was dealing already with it, December 1989, '88. Then he got diagnosed in March. Then that whole year I was working and even when I switched jobs and went to work with the Hispanic AIDS Forum, coordinating and 22:00setting up a project to provide education and prevention for Latino gay and bisexual men, I was working in the field, in AIDS.
ROSENBERG: Okay. So you were talking about the idea that you were livingtwenty-four hours a day between Woodhull and [unintelligible].
NIEVES ROSA: Yes, and even when I switched jobs to the Hispanic AIDS Forum I wasstill working in the AIDS field. That year, my roommate was on and off, in terms of; he never got sick, real sick. He got a [unintelligible] of PCP, he went on to treatment at home, he was one of the lucky persons who tolerate Bactrim, which is one of the best drugs for PCP. He went to into [unintelligible]. He 23:00went to all of the vitamins and all of that. He was more or less healthy that year. But, by the end of that year he was like three months with this coughing, and I was keeping on him, asking him to see a doctor about AIDS and he was coming back, "I forget." "Well, how come you forget? You don't sleep, coughing every night. It's something that you don't forget." He was dealing with his denial and all of that. When he decided to ask the doctor, the doctor decided to hospitalize him, to do a bronchoscopy. They did a bronchoscopy, then they did a biopsy, and they found AKS in his lungs. Then came the worst, because he was 24:00like more--all his anger came out, and who was there to take the anger was me. It was very funny, because at his memorial all his co-workers were saying that he was like this person who never show his anger, who never does--They were all very--that he was taking his illness with pride, with doing things. And I said, "Of course, he gave the best of him to his coworkers, because I'm taking the other part." At that time I decided that if he didn't tell his family, I was going to tell his family about the KS, that I felt it wasn't fair to him, and it 25:00wasn't fair to his family. And I did this differently of how I would work with a client as a caseworker, because I wasn't a caseworker here. I was a friend who knew him for years, who knew his family for years, and who knew the dynamics of a couple of issues that were there, like his own homophobia in dealing with his family, more than his family's homophobia towards him. At that time I suggested to him, "You go now to Puerto Rico." He decided to go that Christmas, knowing that that was going to be his last Christmas, and he wanted to go to Puerto Rico. He told his family, and he suggested if his mother can come and she said 26:00yes. She was almost ready. After he came from vacation from Puerto Rico, then I went on vacation, and we made arrangements, and the mother came back with me. It was very interesting, because he threw his anger towards his mother and to myself, but at the same time, he stressed a very good communication, which gave him a very peaceful death. I think it was something that was very important for all those seven months that his mother spent with us. At the same time, I felt relieved, in terms that I didn't have to deal with all of that. Again, because 27:00it's not the same when you're a caseworker and you're a social worker, when you're a health educator, you're dealing with clients and yes, you do establish a relationship that sometimes goes beyond being a healthcare provider, but it's not that friend that you grew up with, it's not a family that you grew up with, and that's very clear. That was how I learned that I felt for my clients, but it's not the same as when you have somebody in your house. He passed away July 9th, 1990. He didn't suffer. He had two hospitalizations through all that, all his illness, and the two hospitalizations were where he was diagnosed with the 28:00KS, that was just for that, and the second one was due to the KS; his lungs collapsed. I was very supportive to the mother and the mother was very supportive to me. I think we made a very good alliance in working together with him. After his death, I have one of these skills that is probably an advantage for many people; you like program yourself like a computer. I prepared myself for his death, and I went to a death of a very close friend of him, where I 29:00cried, I was like there--like he was my closest friend, and I think that was like a preparation for his death. Also, knowing that I was there, that I remembered at the beginning of his illness he started crying and he said, "Luis, I am fearful of dying alone. I do not want to die alone. I don't want to suffer a lot." I told him, you know, "I don't know if I can make promise, but I promise that as best that I can, I'll be with you to the end." And I did it. I did it well. I was always scared, thinking I have to take him to the hospital with any problem, and I with a friend that came; he was having at that time, we make 30:00arrangements to call this ambulette, private, and we paid and all of that with him not there. Okay. When the day came, I drove to the hospital. What else? Even though all this sadness, there was an incident that was funny, because I was so nervous, I was running like crazy, and he said, "Are you crazy? You're going too fast." I looked at him and say, "Look at this guy! He can't breathe, and he's worried because I'm going fast." I remember that because I looked at him and I said, "I can't believe it. If I feel I can't breathe, I want to get there as 31:00soon as possible." At that moment I was questioning all the work that I was doing. I was stressing myself a lot in terms of setting up a program to do education and prevention for Latino gay men, trying to do some work with a gay group, to organize Latinos here in New York City, and also having this at home. It was like, you know, is really all of this really worth it? It was a whole issue for myself of questioning. I should give up some of these activities and take more time for myself. Probably for other activists, like, AIDS becomes the focus of their life, but not necessarily for me. I know I need--and probably 32:00this is true for people who have to deal with it at home--I needed that time, to take time for me, to think more of me. I told my sister, who has been very supportive. I decided not to tell my family, because they're still living in Puerto Rico, they are worried, they don't know about me within a month period, you know. They know I'm gay, they know I'm working in the AIDS field, they--I have the sense that my mother, for example, suspects, because she's the one who brought up the issue of AIDS, she asked for information, she knew Ramon was 33:00sick, she knew Ramon passed away, and when she told me once that when she went to the funeral, there was a lady with her daughter who didn't want her daughter to go near the coffin because they knew he died from AIDS.
ROSENBERG: At Ramon's funeral?
NIEVES ROSA: Yes. My mother was, like, "It's unbelievable." It was the way Iknew she was very well informed, and I guess she's very well informed because she knows that there is a possibility of it.
ROSENBERG: And still you have not told your family.
NIEVES ROSA: Yes. And my sister--I love my brothers, because I get ofteninterviewed for different things, and once Channel 41, Univision, a national TV, 34:00interviewed myself for the June, 1991, the ten-year "celebration" of the AIDS epidemic, and I've been pretty open. I do believe in becoming a role model for our community, of being a positive person, showing a positive attitude of being positive. And I say--I tell that I was HIV positive; she asked me if she could say that in the interview, I said yes. They passed that in Puerto Rico. Everybody saw me there, except my mother and my father. 35:00
ROSENBERG: And nobody told them?
NIEVES ROSA: I don't know what happened. My brother--One of my brothers saw me,we talked about it. He found out by the TV. He showed me all his support, he made me cry. He made me cry, because he told me, "You are my older brother, I love you, I don't care. People are so ignorant here." Then, it was funny, because at that time this brother of mine was fired for the first time, and he told me that that night he couldn't sleep, and he saw the news at 6:00 PM and at 10:00 PM they repeat it, the same interview, because he wasn't clear how they 36:00said it at the end, if I was positive or not, the way that they said it. What happened was everybody started calling my family. "Oh, we saw him on TV, we saw him on the TV," blah, blah, blah, but nobody talked about what it was about. By that time, my sister who knew was visiting home, and they asked. My brother--It was like a Sunday, they were all meeting together, and she asked, "Well, tell me; what was about the interview? What did he say, what did they say to him?" Everybody looked. My brother looked to his wife, then they looked to my sister, 37:00my brother didn't know that my sister knew, but he catched--Because my sister jumped and she said, "He's popular there. All the Latino channels interview him already. That's job-related to the work that he does." My brother, like, he said that he breathed better at that time, you know because, like, she said that. Because he felt he had to answer because he saw me, and he didn't know what to say. All the rest of the people, it seems to be that they focused, that they saw me on TV. You know, big deal.
ROSENBERG: What happened was the first--almost a digression but--they would tellmy mother, "Oh, we saw your son's movie on TV." They would never say "Your son 38:00is gay." They would say, "Oh, very nice movie, we saw it advertised very nice, congratulations." They wouldn't say anything about the homosexual aspect of it. It's unbelievable. My mom wouldn't say anything. They'd say, "Oh, very nice."
NIEVES ROSA: Yes, yes.
ROSENBERG: But the important point they would leave out.
NIEVES ROSA: Yes. I think that happened. I think that happened there, and peoplewho--I guess the people who saw me, who are close to my family, it seems to be that care enough how they like to respect if they know or don't know they don 't know. Or, probably, a stigma, that they'll go into denial and don't want to talk about it. It's something that I decided, at this point, I feel healthy enough 39:00that, you know, they are so far--Knowing my mother, she would be here next week to see me, to see it through. And I saw her last week.
ROSENBERG: Oh, God. This is going to take us in a somewhat of a different area,so I don't know if I want to ask this yet. Why don't we go back and just focus more on you. How have you dealt with, or what is your situation in terms of health insurance, what kind of health care you've been able to get, and the course of the treatment you've been giving and getting for yourself?
NIEVES ROSA: Okay. I've been on clinical trials since March of 1989.40:00
ROSENBERG: Why don't you explain what that is?
NIEVES ROSA: A clinical trial is when a drug needs to be approved. It goes fordifferent tests. They divide a clinical trial in three phases; one for toxicity, one for--first how it works, the drugs, toxicity levels, and the right amount. I joined one of the trials for AZT for HIV asymptomatic individuals, with more than 500 T-cells. T-cells are one of the tools that the doctor used to design the treatment. It doesn't really tell you that much in terms of the progression 41:00of the illness, it just tells the doctors how aggressive or not aggressive they need to design the treatment strata for the patient. My recommendation as a health educator is that that's something a person always has to discuss, or use a doctor as a consultant. I decided to go on this clinical trial. Also, at the same time, I was taking vitamins, basically, seeing my doctor. When first I got diagnosed, no, tested HIV positive, I saw my doctor every three months, then 42:00after three visits with her, it was like every six months, because I had been doing okay.
ROSENBERG: What kind of doctors have you had? How was it paid for, that kind ofthing? Where did you find this doctor?
NIEVES ROSA: Well, in the beginning I decided to get treatment in the clinicwhere I was working. I was working in the HIV outpatient clinic for Woodhull Hospital, which is located outside the hospital, located at 1420 Bushwick Avenue in the Bushwick section of Brooklyn. At that time, I switched jobs to work with the Hispanic Gay Forum. It happens that my doctor moved to New York Hospital, and then I follow her. At that time, I went and took the insurance that the 43:00Hispanic Gay Forum offered me, which is not the same insurance the Hospital and Health Corporation was offering, which is complete coverage; Blue Cross/Blue Shield plus hospitalization and all of that. Because at the time I joined the Hispanic Gay Forum, it was a community based organization of only five people (I was the fifth one), which, as a community based organization, was not enough resources and--
ROSENBERG: Perfect interviewee. OK you can start now. You were talking about44:00your health insurance.
NIEVES ROSA: Tell me when. Okay. Like, a small organization which carries AIDSin their name, it has problems getting a good insurance like we would like to. Actually, we carry good insurance. What I did was that, I didn't charge any of the visits to my doctor for the first year. It was like free, really. I don't need to charge, for example, tests, labs, to my insurance because I get that from the clinical trial every month. I get a complete checkup, like they do to follow up to see if AZT is affecting anything in my body, plus I get a T-4 cell 45:00test every three month, also for free, through the clinical trial. Then, when I go to visit my doctor, I just go with this bunch of tests from the last six months, and she can see and we both go together over it. I've learned already what is okay and what isn't out of that. And now I'm turning to the insurance, I'm still waiting to see if they are going to decide to pay it or not.
ROSENBERG: Okay. Continue what you were saying, please. You were just saying something.46:00
NIEVES ROSA: Okay. Telling my story has been very helpful; in terms that for me,power, empowering thing of telling people you know, what you go through, and realizing, also, how lucky I have been in terms of getting to know about HIV and AIDS, when I knew about it between '83 and '85, taking my time to be tested, and then continuing with the process of getting more information, of building a support of friends who will help me go through the process of getting tested, just getting tested. Going through another process of educating myself in terms 47:00of treatment, alternative treatments and all of that, in terms of what I decide I want to do with my health. I think I have been very lucky. I think that each time I tell my story, it's powerful. I feel powerful, letting people know what I'm doing, that I'm doing okay. Working in the field I work in helps a lot, because I was conducting--for the whole last year-- a workshop that I designed about the HIV antibody tests. I decided to create a workshop with free exercises; talking about where the participants were going to explore their 48:00emotional support, their financial support, and to do every assessment of their risk factor of getting HIV infected. The whole idea was, with them, these, for themselves, was to prepare for the worst, because that's my recommendation. You need to go to have an HIV test, expecting that you are going to come back positive, because if you are prepared for that, and it comes back negative, you know it's okay. If it comes back positive, okay, you know what you're going to do after that, and that's very important. I guess that being like a role model for a lot of clients; it makes me love my job, like, give a happiness to the 49:00fact of being HIV positive. I feel I'm not the only one. When we hear, for example, a lot of co-workers, who are--who have had more sad stories, like very sad stories. They have been raised here, very poor, onto drugs since they were young, they had to prostitute themselves for economic reasons and all of that. Some of them have been in prisons, and they can tell you that AIDS has been one of the positive things that have happened to them, because it has shocked them, 50:00and they have regained control of their lives now. I think that in one way or another, that happened with each one of us.
ROSENBERG: Let me just think for a second. I'm going to stop the tape for asecond. I just want to see if…
NIEVES ROSA: Yes.
ROSENBERG: If you think there is ever more personal stuff you want to add,whatever that's okay, but I kind of wanted to ask you some general questions about AIDS, especially its impact on Brooklyn, and especially your perspective, as a Latino gay man involved with doing education as only a Latino gay man [unintelligible].
NIEVES ROSA: Okay, yes, very good. It was off, no?
ROSENBERG: These questions are so general. Goddamn it, I haven't used it. For51:00just this question, would you start talking about Woodhull?
NIEVES ROSA: Okay. My experience working with Woodhull Hospital, a hospital thatserved majority of African-Americans and Latinos; while I was working, I'm sorry, working on a ward of twenty-eight beds, I would say that thirteen were African Americans, thirteen of Latinos, and two were white persons, which often they were elderly, who had been in there for years and years and years. I would say that, from the Latinos and African-Americans, the majority of them, I would guess, I would say like almost 100% of them were coming out to be positive, some 52:00of them diagnosing with "PCP," the majority of the cases with "PCP," for the first time. They were finding out there they were HIV positive. Sometimes it was very hard work. I remember one weekend, one weekend that I left on Friday, when I came back on Monday six of my clients passed away during the weekend. It was, like, I went to the director of social work and said, "I need therapy. Let me tell you something. I'm not going up there. Six of my patients passed away during the weekend." It was a disaster, you know? We need to take care of this. Sometimes it became very hard, very hard, and I think it's not getting better, 53:00what is happening in public hospitals. The quality of the treatment is not the best. I used to fight more with the nurses and the doctors than with the clients, because I felt that they were treating them like people who deserved this because they are less than human, things like that. I have to say that at that time, and it wasn't--the first year I was at Woodhull, I didn't know I was HIV positive, because people can say, "Okay, you were like their advocate, because you were HIV positive." No, I wasn't. At that time I didn't know that I 54:00was. Obviously I was since 1985. There, going, working, then to the outpatient clinic was very interesting because the people knew that there was a Bushwick Health Center. People didn't knew that was like the outpatient clinic for HIV positive and AIDS. That gave the community a sense that this was a community health center. People didn't feel as stigma of going to the clinic, that all there were going to point at them. In addition, this clinic was located like in a community center, there was the Salvation Army there, there was a special center for children, there was--How you call these places for children? There 55:00was a mental health clinic, there was also a--
ROSENBERG: Daycare center?
NIEVES ROSA: Daycare center! I am not a father! [laughter] But, people also werescared of who they were going to find in the clinic. Those who were coming to be treated for HIV, they were scared of that. I would say also that the staff of the clinic was very different from the staff of the hospital. It was more humane, it was like a family, it was a mixed representative of the community, where there was only one white person, one Chinese, and then the rest were 56:00Latinos and Black people, including African-Americans here and African-Americans from the, like Trinidad, Barbados, the islands. That made like a link with the clientele who were coming into the clinic. We offered bilingual services, English and Spanish. Even the janitor was this Latino man who grew up in the 57:00area that--he cleans but also if he saw the children of the clients who were there, he used to take care of them while they were going inside to see the doctor. It's very good. It's so sad that they're not allocating more money for these kinds of centers, where the main concern of clients that they were always calling on an emergency basis, wanted to be seen in the clinic, and the medical director of the clinic was saying, "No, if you have an emergency, you go to the hospital. " They didn't want to. They knew the difference in the treatment at the hospital, that it was different than the treatment in the clinic. We did a 58:00focus group once for partners, couples--heterosexual couples--because we were conducting there a study of heterosexual couples in which one was HIV positive and the other was HIV negative. It was very difficult in the beginning to try to recruit them because they were fearful of who was going to show up there and what they were going to think. Well, that's something that we have to first gain the trust of our communities; to trust in us as the healthcare providers. We, as healthcare providers, have to learn that we need to respect them and their needs. It happens that from that focus group that was just a focus group to get 59:00their needs there; to start designing the project for the heterosexual study, they make a support group. They started calling each other; they still call me, a couple of them. A couple of them decided to follow our doctor, the doctor who was working there, who was my doctor, who went to New York Hospital and now she's working in a decent hospital. They wanted the same trial that I did, they didn't care. They trusted her, they felt she was a good doctor, and they followed her from Bushwick to New York Hospital, from New York Hospital to St. Vincent's, and I'm talking of people who live in East New York, people who live 60:00in "Faraway," who was going from Sheepshead Bay to Bushwick, people from Bushwick, they move. If you--And that's one way, you know, you gain the client. They follow you wherever you go, and I would say that they have been keeping healthy. I'm talking of 1989, where, in 1992, it's almost two years, and some of them were diagnosed longer before that.
ROSENBERG: Before it gets too late and you have to go, I just wanted to ask--
NIEVES ROSA: Oh, that's true--Boy. What time I got here? Ah yes, getting my taxes.61:00
ROSENBERG: A quarter to 8:00--Really, just one two-part question here. The issueof the prejudice people face because they're HIV positive, or with AIDS, in New York or here in Brooklyn, and kind of what you think society should be doing more--What kinds of things they should be doing about AIDS, either in Brooklyn or what the city should be doing about AIDS?
NIEVES ROSA: Okay. I would say that here in Brooklyn--I don't know a lot aboutother resources of PWAs, or people who are just HIV positive, have. I know Woodhull Hospital, I know Kings County--Those are HAC facilities, no city 62:00hospitals, which we know that the whole city Health and Hospital Corporation is in a crisis and has been for a long, long time. That's why our communities--minority communities--which these become their place to go and they do not want to go. I know that, for example, the Methodist Hospital here in Brooklyn, they have at least a good awareness about the AIDS issue. They have done some fair, some, like, workshops. They have a person who's active in the field, and for that I assume they have doctors and nurses and all of that who 63:00are very sensitive to the needs of HIV positives and PWAs. Other than that, as a community based organization, I would say that Brooklyn's AIDS Task Force--
ROSENBERG: I'm sorry. Okay, yes we're rolling.
NIEVES ROSA: Okay. Organizations like the Brooklyn AIDS Task Force, who's doinga lot of work here, I had an opportunity to share with them a couple of times and one of the times was going up to Albany to advocate towards the[unintelligible] letter to increase the AIDS funding, because, for example, in the whole borough of Brooklyn there is like, I think, one or two private doctors who will accept clients with Medicaid, for example, which a lot of the 64:00people who become HIV PWAs, and go on disability, they have to depend on Medicaid's insurance. If you are not able to go to a private doctor, because you then have a private insurance or you cannot pay for it out of your pocket, you have to go to places like Kings County, Woodhull Hospital, which are not the best ones, and that's to mention a few. We can continue with Long Island College Hospital, we can continue with Coney Island Hospital, even with VA Hospital in Brooklyn. I know that the Hispanic Gay Forum, we have projections to have a site in each borough, in areas--We were looking to establish a site in the 65:00Williamsburg area, because we were targeting our community, and one of the larger Latino communities is in that area. But, it seems that, as a growing organization, we are growing in a step by step. We don't want to--There's not that many, money to set up an office. There is money out there, it is not a lot. People have to get the money to set up programs, thinking that you already have the organization. Therefore, it will be easiest for an organization that is already located in Brooklyn to establish one. I would say that--for example--El 66:00Puente, which is an organization that provides services for youth, have an AIDS program for adolescents. I know that there is also the--I forget their names. It has to do with education with women.
ROSENBERG: Life Force?
NIEVES ROSA: Yes. It's located here. There are organizations that are doing agood job. Still, these are small, community-based organizations that need more funding. I think that Brooklyn, like all the other boroughs outside Manhattan, needs to take more hands-on business of taking care of our constituency, the people who live in our borough. That's basically it, I would say, for Brooklyn. 67:00We have to offer things and people who live in areas that are far from Manhattan, because focusing on Manhattan--like the place that has more hospitals with more services for PWAs and HIV positive people--people who live in Fort Green, downtown Brooklyn, even Williamsburg, they can cross and go directly. But we used to make people who live in East New York, people who live in--
ROSENBERG: Coney Island.
NIEVES ROSA: --Coney Island. I was thinking of Far Rockaway, but that's Queens,68:00no? Because that name "Far," sounds so far. Going down to Bayside, that area down there, Bay Ridge, I'm confusing the sections--
ROSENBERG: In the two boroughs.
NIEVES ROSA: I'm sorry.
ROSENBERG: That's okay. One last question, and if there's anything you want tosay that I haven't asked you about, you're welcome to say it. But, I was just wondering how you think about your life and the future in the next years, especially knowing you're positive. Do you think about living your life more? You did say you live your life more responsibly. Just, how do you think about yourself now, five years from now, ten years from now? What are your fears, what are your hopes, what are your visions of yourself, as a person living with HIV? 69:00
NIEVES ROSA: Okay. I haven't thought a lot about fears. Yes, one; not finishingmy master's. I came here to do the master's, to get a master's degree. I start that already, a master's in social work. I would love to, because it's more related to the work that I'm doing now (that is counseling). I'd like to refine my skills in counseling. Continue the treatment in any way. I always look for new possibilities in terms of treatment. I think the best treatment that any person can do is, looking at treatment from a holistic point of view, 70:00understanding holistic as how you can put your mind in a positive way that whatever you're going to take, it's for the best of you, and it has a lot to do with anything you take would help you. Obviously. When I'm talking now of anything you take is things that there's proof that it helps, in terms of treatment. Always open to any new possibility, being careful in terms of not jumping into anything new, and it's something that I try to educate people, you know. They hear something that comes in the newspaper, they find this, blah, blah, blah, people want to get that right away, and it's--Also, educating the 71:00community in terms of newspapers, the media are there to sell and they are going to use anything that will sell newspapers, that will sell news for each channel. We have to be careful with that. As a health educator, we have a big fight in terms of trying to get our community wired; they are getting a lot of message out there. They come, like what they said, "There's this new drug." They invented the drug in their laboratory, probably tested with mouse or rats or whatever. Now they have to go through a whole other procedure to finally decide how they're going to start testing it for toxicity and all of that, to test on humans. That takes like ten years, and the majority of people with these 72:00concerns probably do not have ten years. I do believe--and it's something that I let people know--that this can become a manageable disease, like cancer has been. There's not a cure for cancer, there is not a cure for diabetes, but people have learned how to live with it. That, I feel, needs to be an approach that we'll have to look to. People--I think human nature always likes the easiest way to get things done, and we are looking for a vaccine. I always say to clients, "Okay, let the scientifics deal with the vaccine, let the AIDS 73:00activists deal with the issue of putting pressure on the media, to the government, to legislators, that we need. We need to become like an echo of this movement. We need somebody who lays like inside, who will do lobbying for us. Also, we need to have a health educator become like a neutral point: educate our community on the issues they need to know to take steps toward taking care of themselves. That's how I say it to my clients, because that's how I've been doing it until now. This is 1992, I do believe I was infected before January, 74:001985, when I practiced safer sex, therefore it has been like seven years I have been living with HIV. Who knows? Who knows if I wasn't infected in 1982? Nobody knows. What I'm trying to do; I'm trying to keep myself as healthy as possible and continue doing my life. People with cancer have learned to do it.
ROSENBERG: Is there anything else you want to say, want to add, or anything?
NIEVES ROSA: No. I'm sleepy.
Oral History Interview with Luis Nieves Rosa
An HIV positive and healthy Puerto Rican gay man, Dr. Luis Nieves Rosa was thirty-three years old in 1992. Raised in Arecibo, Puerto Rico, he moved to San Juan in 1977. Being openly gay since age eighteen, he was convinced later that he had contracted the virus through sex in 1985 or earlier. He moved to Brooklyn in 1988 and lived in the Fort Greene neighborhood when the interview took place. From 1988-1990, he was a caseworker for people with AIDS (PWAs) at Woodhull Hospital in the Bushwick neighborhood of Brooklyn. It was during this period that his roommate and good friend got sick and died of AIDS, and Nieves Rosa was a major care-partner for him. Later, he was working at the Hispanic AIDS Forum, and was active with Latino Gay Men of New York on gay and AIDS issues. He had completed a doctoral program in social work at the University of Puerto Rico, where he also teaches, and in 2012 he published on the subject of homophobia in universities. As of 2014, he was serving as Director of the Center for Applied Social Research in Puerto Rico.
Luis Nieves Rosa is interviewed about his young adult life as a gay man in Puerto Rico and the four years, prior to this 1992 interview, spent in Brooklyn. He speaks generally about the issues of Latino and gay Latino people with AIDS from his work with the Hispanic AIDS Forum. He weaves together four strands of his story: a gay Latin man who is HIV positive (he participated in an experimental drug study), a care-partner for a friend who died of AIDS, and a service provider and activist on AIDS issues. Interview conducted by Robert Rosenberg.
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.
CitationRosa, Luis Nieves, Oral history interview conducted by Robert Rosenberg, July 11, 1992, AIDS/Brooklyn Oral History Project collection, 1993.001.17; Brooklyn Historical Society.
- Hispanic AIDS Forum
- Rosa, Luis Nieves
- Woodhull Medical and Mental Health Center (Brooklyn, New York, N.Y.)
- AIDS (Disease)
- AIDS activists
- HIV-positive persons
- Puerto Ricans
- Self-help groups
- Social group work
- Social workers
- Stigma (Social psychology)
- Brooklyn (New York, N.Y.)
- Bushwick (New York, N.Y.)
- New York (N.Y.)
- Puerto Rico
Finding AidAIDS/Brooklyn Oral History Project collection