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Dolores Rivera

Oral history interview conducted by Robert Sember

September 11, 1992

Call number: 1993.001.16

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[This interview was transcribed from a videotape source in 1992. The first 440+ words of interview transcript represent content that was not transferred from video to audiotape.]

SEMBER: I would like you to tell me how you are involved with AIDS, what your relationship is to the AIDS crisis.

RIVERA: How am I involved today?

SEMBER: How is it that you are a person who is involved with the AIDS crisis?

RIVERA: Well, first, why I really got involved was because I wasn't knowledgeable about the virus at all when I first found out, and I have four children, which -- I have three boys from the age of 23 to 28, and I have a daughter who's 30. And they are sexually active, and my concern for them made me go out and want to find out more about the virus and get involved with speaking to younger groups, that anybody can catch it.

SEMBER: How are you personally, yourself, involved with AIDS?

RIVERA: I am positive. I was told in '86 that I had full-blown AIDS. I was in the hospital with PC pneumonia. I've had it twice. I have several infections, I've been anemic, I had to have blood transfusions from taking AZT. I just got out of the hospital two and a half weeks ago. I was there almost a month. I had a bad herpes infection of, what do you call it? The throat. And I had spinal meningitis, and several different things have come up where I've been hospitalized. The more I go to the hospital the more afraid I get, but at the same time I get more courage and am willing to go on. And I always bounce back. My doctor even says [unintelligible].

SEMBER: What was your life like before you discovered you were HIV-positive?

RIVERA: I was married previously, 18 years. And I'm not blaming it all on my marriage, but at the time I was going through a divorce I end up picking up drugs, at the age of 36 years old. Prior to that it was just other things that would happen, from my childhood and-- it was a crazy life. During my marriage I lived in a fantasy world, denying my family-- I come from a family of 13 children. My mother was Irish, my father was Black, and for over 20 years I've passed myself off as a Puerto Rican. So, it was a lot of things from back there, just surviving.

SEMBER: Where were you born?

RIVERA: In Brooklyn. In King's County.

SEMBER: And you grew up here?

RIVERA: Yes. I come from a background of insanity. Alcoholics, gamblers, I was sexually abused, physically, mentally, the whole bit. And to get out of that I went into denial of who I was. I ran. I didn't deal with my family anymore. I married a childhood sweetheart that I met at the age of nine. [Audio commences here.] You know, it was a lot of issues that I never really dealt with. And not to deal with; one, was marrying, thinking that was gonna get me out of it. And I stood in the marriage eighteen years, which I raised four children. And, uh, at the age of thirty-six, uh, everything came to a halt again, and I, I don't know, I just couldn't handle it. My children were at that age, grown. My daughter wasn't there for us, and, uh, my other sons were getting ready to leave the house and I felt alone and I started hanging out. And, uh, I got involved with drugs.

SEMBER: How did that happen? How did getting involved with drugs happen?

RIVERA: Well, on my job I started drinking, hanging out. And the majority of them didn't drink, they did drugs. [Interview interrupted.] They started doing 1:00coke and uh, at lunchtime it was, "Why don't ya stop drinking, try this." And I wasn't into drugs at the time, so I said "Nah, no." But eventually I did; I picked up the coke and I went to freebase, and then from freebasing, I thought it would be cheaper to pick up the needle. And that's how I got involved with that. And what happened was that eventually it caught up with me. I stood out there for a few years, using. I had just moved to Staten Island. I went and bought a house with my daughter, and I had money from my marriage my husband had gave me. And about six months we was out there, and I came home from work and my daughter confronted me one day. She found some works and stuff, and she said, "What's going on?" And I split. I didn't answer. I left a little note on the door, and I just kept on going, and never went back. And I stood in the streets, like four and a half years, without being in touch with my family. I end up 2:00leaving my job, I end up sleeping out in my car, and eventually I end up living in the streets. What happened was that I was living in Prospect Park with some other people. And there was an incident where some kids had threw some kerosene, and a friend of mine got burned and died. And I was taken in, like three o'clock in the morning, to the precinct to be questioned, and that's when I realized how bad I had gotten. I had totally had lost it. I remember that when they walked me to the precinct, that they didn't want me to sit on the chairs. They put newspaper. That's how dirty I was. I was living in the streets, cashing bottles from garbages and stuff like that. I had no ID on me, no nothing. Anyway, they 3:00had released me, and on being released I left the precinct, and on Union; I think it was on Union Street and Prospect, where the traffic is, I tried to commit suicide. I ran into the traffic and some people came over, and out of that crowd there was a friend of mine and she recognized me. And she took me on the side, she talked to me, I said I had no money, no place to go. And she told me she couldn't take me home, because I looked so bad her family wouldn't accept it. But she would meet me the next day and try to get me some help. And she did. She gave me a Medicaid card under somebody else's name, and I went into a detox, I think in Bedford-Stuyvesant, somewhere over there. And that was the first time I was in a detox, I remember being humiliated going through there, because I had to have my hair cut, showered 'cause I had lice in my hair, and stuff. That was the first place I heard about NA, and after I did my 28 days there, I was scared 4:00because I had no place to go, and I didn't really know what was going on. I ended up going to an NA meeting, they told me to go there. That's what I did. And I did that for like four days, before I opened my mouth and told them I was still sleeping in the streets. I had no place to go. The woman that became my sponsor ended up calling Staten Island for me, to my daughter's.

[Interview interrupted.]

SEMBER: So you went in to the detox. When did you, in all this process, discover you were HIV positive?

RIVERA: It wasn't until I came out and started making NA meetings. I was six months after I was clean, six months clean. And I got very sick. And I was hospitalized and it was there they told me that I had AIDS. I was in there with PC pneumonia and some other infection. At first they told me I was sick just from living in the streets, not taking care of my body, and all that other 5:00stuff. But I guess from the blood work they did there, and everything else, and when they found I had PC pneumonia. Because I had previously had a cold, like I never got rid of, but I wasn't living right either, I was living in the park and shit.

SEMBER: Do you know how you contracted the virus?

RIVERA: It's either from using drugs, or sex, while I was out there. I really can't pinpoint it to one thing.

SEMBER: So when you were on the streets and when you were taking drugs, you were also having unprotected sex?

RIVERA: Yeah. And also I found out later on that the last fellow I was with died of AIDS. So it could have been from him.

SEMBER: So this discovery that you had AIDS came after a long series of other struggles. How did you feel when you were told that you had AIDS?


RIVERA: At the time I was devastated, because it was at a time when I was trying to clean up my act. I was trying to get myself back together. I had gotten back in touch with my kids. They were very disappointed that I had used drugs, because they didn't. And like, it was, "Why didn't you tell us? We would have been there." It was a lot of--I had denial, I guess. And then again I wanted to commit suicide, because I felt like, what's the use? I believe that AIDS was a death sentence, and that was it. And I was, like, "How can I tell my kids I got AIDS now?" [Interview interrupted.] When I first heard it, I was devastated again, and my first instincts were to commit suicide; out of the guilt, the shame, the whole thing. It took a whole year before I even told my family that I had it, because my daughter had had a friend whose brother had AIDS, and she 7:00stopped being friends with them, because she didn't want her kids there. My children were very ignorant of the AIDS. They were afraid, I guess. My fear was that they would reject me, so I didn't tell them. It wasn't until I got very sick and I almost died that my doctor spoke to me and told me he thought it was best I let me kids know what was going on. Because it wasn't being fair to them; if I didn't make it, that they would hear from somebody else. So New Year's of '88 I sat down with them and told them.

SEMBER: When you were using drugs, on the streets, having sex, did it ever occur to you that you might become infected with HIV? Was that a concern of yours?

RIVERA: My biggest thing out there was; I was running from my kids. And then the shame, guilt, everything came out. I was another person. I had nothing to do 8:00with my concerns, my condition, or what to do. It was like I just didn't care. I didn't think about AIDS. I never even thought about it. I really didn't even hear that much about it, because I was isolated from even the addicts. I stood to myself. I would go get high and just stay to myself. You know, 'til it got to a point where I forgot about my kids. At one point I used to think constantly of my family, of the hurt. At the end it wasn't like that, it was--I just didn't think of anything.

[Interview interrupted.]

SEMBER: So once you found out you had AIDS, what steps did you then take?

RIVERA: At the beginning, like I said, not really much. My steps was hiding the 9:00fact. I didn't tell nobody at first, then I opened up to my sponsor from NA, and I spoke to her, and they took me to 208, on West 13th Street, the Community Health Project. And that's when I started getting more information about it. I started getting involved with support groups and stuff like that, which gave me a little more hope, a little more courage to go on. I didn't know what was going on, because at the time I found out, also two of my friends had found out--that I had met. And they're no longer with us today, but it was like I was sicker than them, and I always pulled through and they didn't. And what I found out through one of them, she didn't believe in medication, she wasn't doing anything, and that scared me. So I started taking care of my health better. I started doing what I had to do for me, and I tried just about anything, if I 10:00thought it was going to improve my health. And by doing that, I've grown. I started dealing with my own issues. Because putting down the drugs wasn't just one thing for me, and I realized that later. I had to go back and start amending things I had pushed and stuffed for years. And I went to a therapist, and they've been helpful. You know, to look at the issues, what's going on.

SEMBER: How has AIDS affected your life today?

RIVERA: I see life in a different view. You know, I'm not grateful that I have AIDS, but in a way I'm thankful, because it's made me look at life differently. At one point I always wanted to die. I never wanted to be part of the system, the world. I didn't ever felt like I belonged. Today I do. It's made me more 11:00stronger, a fighter, you know. I realize today that I want to live, not die. And how much life means to me, and the values.

SEMBER: Have you seen it have an impact on your family?

RIVERA: Oh yeah. Yes. They've seen a change in me. And the biggest--you know, between having the virus and also being an addict, it was, like I said, there's issues that I had to deal with. And one of them was getting honest with my kids. Because they don't know the where I came from. They knew their mother--They always thought of their grandparents being good grandparents that died when I was a child, which was a lie. And I started getting back in touch with my own family, sisters and brothers that I haven't seen in over 20 years. So it's changed a lot of things. I also had done TV shows with the virus, which--how I 12:00got in touch with many of my sisters. Because they lived in Florida and California, and they saw me on TV. And that's how things happened, doors open. Like they say, doors close and other doors open. It's been proven to me. And I believe what I got today, for me to keep what I have I have to reach out to other people and tell them that there is hope. I believe I live a better life today. I'm much happier than I've ever been. And I'm not living lies. I'm being me. And if I can prove that I can be accepted with AIDS, I can be accepted just being me. So it's opened a lot of doors for me. I've dealt with prejudice all my life in other situations, and I reply today to having the virus, and it's not all about that, it's not all about that. I believe if you're loving and caring, 13:00as I try to be the best I can today, that there's a lot of people there. There's a lot of support. And keeping all the dark secrets only hurts me, eventually. You would like to blame the world for my bad doings, and it's not all about that. And I've learned today, for me, and believe wholeheartedly that what you put out is what you get back.

SEMBER: What impact does it have on your body?

RIVERA: Physically? First of all, I just turned 51 years old. Tuesday was my birthday, and I feel more energetic than I ever have, but I know physically I don't have it today. I tired easily, I'm sick; I've been off and on in the hospitals. But I also know that there are certain things I can do and that I can't do. And by going by those rules, I'm able to function. I just don't lay 14:00down with it. I have a house attendant that comes and helps me, but I don't feed into all that. I have to do for me to know I'm alive, that I'm not sick and I'm not dying. I wasn't able to go back to work because of the virus, because I never know what tomorrow is going to be. But I do it one day at a time.

SEMBER: After that first bout of PCP where you were diagnosed, what other illnesses have you had?

RIVERA: I've had that, I've had blood infections, I've had the herpes, I deal with those infections back and forth. I've had a hysterectomy done. I've developed tumors. I've had several infections and stuff. And what I learned is that a lot of the sicknesses I have are normal sicknesses, it's just that my 15:00immune system is so bad that it affects me easier and quicker. That causes me to be laying on my back.

SEMBER: Do you know your T-cell count?

RIVERA: Seventeen. And when I first found out it was like three hundred and something. But I don't believe in that either. Because when mine has been the highest, I've been my worst. I've been on my back in the hospital. And now it's 17 and I feel fine. As long as I don't feed into it; there's times when I feel sorry for myself and I get scared and I get myself sick. I actually--it's more the stress that gets me down than anything. But you see, even when I'm in the hospital and they tell me, "You gotta lay down, you gotta take it easy," I can't. I've got to get out of here. And that's what makes me get up and go. I don't, I can't live with it. Maybe it's part of denial. I don't want to believe it.


SEMBER: After you had been diagnosed, and you were getting to know what it was to be a person with AIDS, where did you turn to for information? Where have you [unintelligible]?

RIVERA: I've been going to GMH and different support groups. What is that, AIDS? The Women with AIDS group, they have meetings. I've been there. I also just started this last year with Ruth Messinger, Women and AIDS, I'm on that committee. And I go different places; Mother Love's, I go there also. So I do different things. I found out by talking about it and getting involved in different places. How many more people I realized do have it and don't talk 17:00about it. And how it surrounds me, where I think I was a speck and everybody was running out. But, it's like I'm part of that speck now today. There are less people around us; there are more in the circle.

SEMBER: Was it difficult to find information? Was it difficult to approach groups?

RIVERA: It was difficult for me because I'm a loner. I'm basically shy, and it was very hard for me to open up and ask for help or information. I'm getting better with that. [laughter] But like I said, I'm finding out a lot of our issues from our past stop us today with this issue. Like, I was always brought up that you don't hang out with gay people. There's no reason today. Mostly all my friends are gay, but that's because I open up and I don't look at them as gay 18:00anymore. I just look at them as people, they're caring people. And we have something in common.

SEMBER: What has been the most needed support that you have had? That you've wanted? Of all the options that are there to go and find support, which ones do you think are the ones that you are drawn most to?

RIVERA: I needed everything, for me. It's because of my background. It's really hard getting honest with my past, to help me today, 'cause that stops us from growing and stops us from having belief. I wasn't a religious person, and today I believe in God. I do believe in a power greater than ourselves. I don't believe in religion that's organized, but I do believe in a power greater than us. And I believe in people today. I've come to trust. I believe in that love, 19:00that connection that I never thought existed. I see it altogether different, in a different light. I have friends from all over, different nationalities, where before I just didn't bother. I was very choosy about who I spoke to, and still wasn't honest in who I allowed in my life. Today I'm open. And I believe in that bond. That's what we're here for; besides the AIDS, all that other stuff. I work on that first, to come to a better understanding. This is just part of it.

SEMBER: Dolores, what has been the course of your treatment? Once you had that first bout of PCP?

RIVERA: Medicines? AZT, Nyzerome, Bactrim, Contamedine, I'm on several 20:00antibiotics for different--for the herpes and other infections. Like today I 'm taking like 14 different medications. I have an appointment this week; I've got to go back because I'm starting to break out with another rash.

SEMBER: You mentioned some time back that you'd tried anything. Did you try alternative treatments?

RIVERA: Oh yes, I've done several different things, but I've had certain reactions. I've stopped medicines, went back to them. I've done a lot. As a matter of fact, I'm starting to look into this one I heard over the weekend; the blood transfusion from another HIV person. They're doing--but I've got to get more information on it and find out if I can do it. I don't know how expensive it is. That's another thing. Financially, I'm just DAS and SSI, so I have a low 21:00income. So it's hard to get involved with a lot of things. I do what I can do.

SEMBER: How has it been dealing with the healthcare system?

RIVERA: It's been up and down. Also, at the beginning, when I first found out I had the AIDS, I had to have an operation because I had developed a puss thing, I forget the name, what they called it, and so I was prepped for surgery, and I was right in front of the operation room, and the doctor refused to do the surgery because he realized I had AIDS. I was furious, I was like "Didn't you read my records all this time I've been here?" All of a sudden, so I was transferred to Bellevue Hospital. So at first I didn't want to deal with anything, because I was going through those transfers, but like I said, there was one doctor that took an interest. He told me, "It's your body," and he had a 22:00whole different attitude. And I realized; sometimes, dealing with this, as far as the medical system, it's the kindness. I don't want them to feel sorry for me or feel like it's hopeless, like they don't care, but just take the time out, let me know that I'm here, it's me, I'm a person. Like I said, I'm a person with a disease, I'm not the disease.

SEMBER: How do you feel about the care you get?

RIVERA: Like today? Good, good, because I've learned to talk up for myself, to say, "This is my body, I don't agree with you." Or if I don't understand, "Slow down, I don't understand." At one time, whatever they said was, they were the authorities. I looked at them in a different light. They were the ones that had the position, and I was a nobody. So they knew better. But not today, I don't feel that way today. If I don't like something, I say, "Whoa, slow down. Back 23:00off. It's my body."

SEMBER: They must love you.

RIVERA: Oh yeah. They do. There are some that don't, but I've come to deal with doctors like anybody else, as a person. Where I thought they didn't even have problems, or they didn't even think about anything--the way I feel now, today--they do. They wake up on the wrong side of the bed just like the rest of us. [laughter]

SEMBER: How much time do you spend a week dealing with AIDS?

RIVERA: Every chance I get. Every chance I get. That's my life today. Dealing with it and dealing with organizations and speaking, lectures, things like that. I've gotten so much more. It's given me a purpose. And I believe that God has put all this in my life for a reason. I've become a better person, I feel, a better person. And I love life today, and I love the people around me, so I want to keep them going to. So I do what I have to do.


SEMBER: Part of life is your sexual life--

RIVERA: I haven't been with anybody for five years. At the beginning it wasn't my choice, I had developed ulcerated sores on the vagina area, and I was told not to have--or even with, use condoms. So I accepted that, and as time went on, I haven't gotten involved. That's another thing in my life; I don't want to go through that. I don't want to be responsible for somebody else. It's a lot of different reasons. Relationships I'm working on today, so I have a lot of male friends today, which--before just to have them I had to be in bed with them. [laughter] You know, so all that's changed. So it's not that--I have a good life. I don't need somebody there to make me live. It's different. Like I said, 25:00when the time comes, if it's meant to be, it'll happen, and I'll more the happier because I didn't just jump into it. I've went out with guys that weren't positive and knew my condition and were willing, and I wasn't ready, though. I was too afraid. We're still friends today. We go out to dinner and movies. But I don't have them moving in today. [laughter] A lot has changed for me. I don't say life is a bowl of cherries today, there's times I'm up and down. But I hold onto the good feelings, because it's been so long. I didn't even know what a good feeling was about. It was always a different thing with me.

SEMBER: And you haven't been back to drugs?

RIVERA: No. I've been clean five years, had the virus five years, I'm out of a relationship five years. Everything's happened within the five years, a little over five years really.


SEMBER: Was it difficult at first, to be off the drugs?

RIVERA: Oh yeah.

SEMBER: I know a number of people that I've spoken to, they say that part of dealing with the diagnosis, was getting so depressed. [unintelligible]

RIVERA: That they wanted to go back. Many times it's like--that's what I'm saying. I guess because of the path I took, and where my background came from, I was already in enough pain and I was sick and tired of living that life. Now something else it added onto it. It's like, either you shit or get off the pot. Meaning either I'm going to take my life and just end it, or I'm going to try and fix it. I started working on fixing it and it's gotten better. And it's not as devastating as I thought it would be.

SEMBER: You mentioned that you were born in Brooklyn and you grew up here, and it sounds from the things you've been saying that you know the area pretty well, 27:00that you've related to it in many different ways. And your involvement with AIDS at a variety of levels must give you a fair sense of the way in which the virus is affecting the community as a whole. What is your impression of the way in which AIDS is impacting on Brooklyn?

RIVERA: Really I don't believe there's enough people from--like you're saying, I was brought up in Brooklyn, I know the people, I associate with the different ethnic groups, and each group goes about things different. Like they say the middle class White is more suppressing with it, it's more secretive, we keep it amongst our family. Where Blacks, and Puerto Ricans, I find, that are out there, the lower class, they throw it right out there, they don't care. There's no 28:00reason to care. Nothing's going to get any better. So they don't care about you, so they catch it from you, or they give it to you. It doesn't make a difference. And until we start feeling better about ourselves, we're not going to deal with any more hardships at all. Since I can remember for myself, you run from all of that. We just keep on--we become survivors. That's it. We don't live life and they don't know the difference. And until we learn the difference, it's not going to make a difference. Do you know what I'm saying? And I believe that you have to have smaller ethnic groups to deal with people that hurt so badly. To make them realize there's a life there. When you don't know no better, it doesn't make a difference, because at the beginning for me, that's how I felt. It was like, "Who the hell really gives a shit?" And to find out there are 29:00people who give a shit, you have to start giving a shit. Because I shut everybody out, I didn't want to hear. I always thought I was there to be used or to use. Until I realized it isn't really all about that. Until I opened up to realize, and it had nothing to do with AIDS, it was just: People do care. You have talk about it, let your feelings out. I was brought up that White men were just going to use you. And you wasn't shit and you wasn't going to amount to shit. Until I shut that life out, and I felt more accepted from Puerto Ricans, because I didn't feel accepted from Blacks or Whites, and that's a basic thing from my background. I felt accepted from Puerto Ricans, that's why I lived that life. As a Puerto Rican. And in that I was able to feel like, "I can do 30:00something. I don't have to live in the slums, and I don't have to be rich, but I could survive." And that's basically what I did. I survived in that community. But in denial. So I never was really comfortable. I was always waiting for somebody to find out about me. All that I have to apply to today. I look at it differently. I look at everything. Today I talk to Puerto Ricans, Blacks, Whites, and I'm very comfortable with it. And I don't have any hostile feelings the way I did before. Who's better, who isn't better.

SEMBER: Would you see these feelings as being ones that are very widespread [unintelligible]--

RIVERA: Oh, yes.

SEMBER: --communities in Brooklyn, and that affects the way in which they respond?

RIVERA: Yeah, to AIDS or anything else. It's either, you got it from the gay community, or they see you're an addict, a nobody. "It's the nobodies who 31:00brought it to us, and we're paying the price." Even here, this is Bensonhurst, it's basically Italians, and they're very hostile. But they're not. This is they're front, to come off hostile, "We're good people." And it's sitting right around here in their own homes, and it's like, "Could you help me out?" But under their breath, "Do you know where I can take them?" They quit or deny their children. There's, like, four of five families right in this area. And when I did the TV show, a lot of them backed off. "I saw you on TV." Before it was, "Oh hi, how are you doing?" Now it's, "I saw you on TV." I said, "Yeah? Did you get anything out of it?" And I walk on. I wasn't like, "Fuck you," that attitude thing. It was like, "Have a good day."


SEMBER: Are you in any way still in contact with people that you used to shoot up with?

RIVERA: Oh yeah. I've gotten a few of them in the rooms, and I've talked to a few.

SEMBER: Have you seen, over the five years that you've been aware of AIDS, in the way in which you've been aware, a change [unintellible] drug community?

RIVERA: Yeah. And like I said, there's some that there's hope for, because there is that little opening, and that's what I go for. It has nothing to do with the AIDS. I try to talk. It isn't all just bad living in this world. And try to get them the help they need. There's so much shame and guilt in us, so this just adds to it. And if you could just put that on the side for now, and start working with the other shit first, gives you enough, then you can deal with this. Like, I've met a lot of women, younger, even my own family--I've met two 33:00nieces that I didn't see since they were babies--at an HIV-positive support group. It brought us together but it's like we're working on issues, other issues at the same time. I know what they're going through. Just thinking of my own family, where they came from, without being there. We have a large family. Most of them all have children or whatever. These are kids that I saw as children that have kids today. One of my nieces has two children that are positive. And she's going through changes. She was an addict. And it was, like, "I heard so much about you, Aunt, but I didn't know you were an addict. I knew you were married, you were always against drugs." I says, "Things happen, because we don't talk about what we feel." Mostly everyone who knew me from 34:00before, said, "I would never believe you were an addict. I always knew you were quiet. I always knew you was--" Today, when I go to NA meetings, they say to me, "I always thought you were Puerto Rican. Where did this Black and Irish come from?" [laughter] I said, "You see how easy we could be fooled?" I still deal with other issues but it's okay today. I deal basically where I'm comfortable. I go out of that comfortability today, but I start off where I'm comfortable first. Because if I feel uncomfortable I'm not going to just open up and say things. Because there has been times where I have repercuss--you know, from other people that didn't appreciate my little secrets [laughter]. You know, I'm still dealing with my ex-husband. It was like a lot of things with him. But I deal with it today. I don't run.


[Interview interrupted.]

SEMBER: When did you first find out about AIDS? [unintelligible]

RIVERA: In '86. Myself that I was diagnosed--

SEMBER: Was that the first time you had heard anything about it? Not yourself, but just as, you know [unintelligible].

RIVERA: I had heard, probably in ' 85, off and on, but really never paid any attention to it. I heard there was a disease that the addicts were getting. That was as far as I knew; that addicts were getting it.

SEMBER: Can you remember how you heard that?

RIVERA: Mostly people that were shooting drugs, in some shooting gallery somewhere. It was said that somebody had died from this virus. But like I said, I would shut all that out. You know, I wasn't into the world. I didn't really put attention to it.

SEMBER: So when you were diagnosed, you had to learn the whole thing? [unintelligible]

RIVERA: Yeah, the whole thing. When they said AIDS, "This is AIDS." I said, "What the hell is AIDS?" Because I also only knew it as HIV-positive, that you 36:00were positive with this disease. I never really understood the whole concept of it. I knew people were dying from it. At that time, I really believed they were dying from the drugs. You know, from the needle, I just thought addicts had it.

SEMBER: Can you recall when you first met a person with AIDS or a person who was HIV-positive?

RIVERA: That had to be in '86 also, when I found out, that I met.

SEMBER: You were the first person that you met?

RIVERA: Yeah. That I really realized it was--and at that time I thought it was a death sentence. I thought I was going to die within days when I first got it. Because that's how I was confront--I was in the hospital when I found out, then I found out there was other people on the floor that had it. And I heard two of 37:00the people had died. So that's what scared me. And all I thought of it was, about a month after I guess, the first time I saw somebody with AIDS was in the hospital, and they had the sores and stuff, and I thought that happened to everybody. So that used to scare me. That was my biggest thing. Every morning I used to get up and look. I was looking for these things to come out all over my body. And then, as time went on I started praying, and asking God, if I had to deal with this, let it stay on the inside, that you don't see it. And I believe that's what's really happening to me. [laughter] Even 'til today I think it sometimes, because people say, "You don't look like you have the virus, you don't look like you've been that sick. But I feel it, I feel a difference. Each time, like, I deal pretty well with it; it's just that when I go in the hospital all that fear kicks up again. That I'm going in now and I'm not coming out. And 38:00each year I have to realize that's how I felt at the beginning and I'm still here five years later, and then I wonder about that, you know, why? How come my friends are dying so much quicker? Like when I was in this last time, a friend of mine went in the hospital, first time in the hospital, and she went in and she didn't come out. And I couldn't understand it, because it was the first time she was in the hospital.

[Interview interrupted.]

SEMBER: It seems as though you've become involved in quite a few organizations, educational groups and that sort of thing. Do you have a general description of what those are, and how that happened, that you became involved with them?

RIVERA: Well, it happened through someone reaching out to me, asking me, taking me to get help at 208 13th Street. When I was there I thought it was just for 39:00medicine and doctors, then I found out they had groups, I went to safe sex classes. I started getting involved, basically seeing different people there. You know. And listening to them, it helped me come a long way, and then seeing other people sitting in the same seat I sat in, with their mouths closed, scared to death. And realizing that if they didn't reach out to me, I'd be still sitting there crying, you know? So I started getting involved and talking more, and I usually look for the one who sits there quiet and leaves, and don't say nothing. I usually try and get involved with them or coach them.

SEMBER: Do you usually do it mostly on an individual basis?

RIVERA: No, I've been in big groups. I've done lectures at the universities and hospitals. I spoke at a doctors' conference in San Antonio, Texas, amongst 1,500 40:00doctors. That was my first experience talking to a big group, and realizing that I could do it. I was petrified. They thought I was having a--what do you call it? A seizure, 'cause that's how bad I was shaking. But once I started I got through it, and it was great. And to realize that people do sit and listen, and you need to talk, and sometimes people need to hear. And for 15 doctors to tell me that I had something to offer, that they couldn't find in books, made me even want to do more.

SEMBER: This you do through specific groups?

RIVERA: No. Like, so far, someone else heard me and told them, and they get in touch with me and they asked me. I learned not to say no, because for myself it 41:00helps me. There's always the experience in speaking or helping reaching out to others. I always get something good back out of it.

SEMBER: How do you address Brooklyn issues specifically?

RIVERA: In certain--It depends what the lecture's basing on, they usually ask you to speak on a certain subject. And once in a while I'll get a chance to speak on my own feelings, what's needed, what I feel is needed. And then I'll choose to speak on my own ethics or the groups', and--Brooklyn, there's nothing here in Brooklyn. Even from my own experience, for myself, everything I needed I had to go to Manhattan for. I could never find what I need here in Brooklyn. 42:00They've starting several groups here in Brooklyn, but they don't get enough support. It's the same, it's like, the last two years, it's like, I've really come to realize about the kids and teenagers. You didn't hear much of that at the beginning, when I found out. It was usually the adults or the older crowd, but I did some lectures where it blew me away, when I see 14-year-old kids with the virus. I met a nine-year-old boy who got prostituted, was an addict, and through that has the virus. It wasn't like he was even born with it. You'd think that at that age maybe he was born with it. And to hear where he came from and the changes he went through, it blew me away. It's like, where the hell are these people at? Where was anybody for this kid? You know what I'm saying? And 43:00it's getting bigger. There's more and more kids. And I believe, I've come to accept for myself that, again, maybe tomorrow I won't be here. I've learned to deal with that. It's okay today. But my main concern and my worrying about me today is about my kids. What kind of future is there for them? Or my grandchildren, what am I going to leave here for them, you know, a fucked up world? I want to do something for them today, so that at least if I do go I can go in peace, knowing there's some kind of hope for them.

SEMBER: So even in the five years that you've been involved you've really seen some remarkable changes in the spread of the virus and the groups that are becoming affected.

RIVERA: Even when I first started going to NA rooms, never heard them speak about the virus, never heard it. When I first found out I was one of the first 44:00persons to bring it up in a meeting, and I was told at that meeting, "This is not the place to speak about that." And I said, "I'm sorry, but I feel that this is the place for me to speak--"

[Interview interrupted.]

SEMBER: Have you been involved in activism in any way? Would you consider yourself to be an activist, someone who fights for change?

RIVERA: I was involved with ACT UP, and stopped because I don't like the way they do things. There's a lot of things I don't really like. I believe in a lot of their issues, but the way they go about it, that's not me. So I just stopped going. I might go to--once in a while--to their rallies, but I really don't get involved as I did before. And another thing is, with my issues, that kicks up a 45:00lot of feelings for me, as writing or -- It's like, it's just that I don't like a lot of insanity, I shy away from that. My doctors…

[Interview interrupted.]

SEMBER: You mentioned earlier that when people in the neighborhood have seen you on TV shows, that they have sort of backed off a little?

RIVERA: A few did, but a lot of people were like, "You should be proud; it took a lot of courage." I got both, and that's--Today I learned that I don't feed into the negative. I try to hold onto the positive, because it's real easy for me to start saying, "Oh, I shouldn't have done this, I shouldn't have done that." I just try not to, and I keep track more of the positive attitudes. [laughter]

SEMBER: What kind of opposition have you come across, apart from that?


RIVERA: What do you mean, with people?

SEMBER: Yeah, with people. Your negative responses; you spoke about the doctor.

RIVERA: The first super that lived in this building, I did a Fox 5 show. And he saw it, and he started banging on my door. "I think you're going to have to move from here." And I said, "What are you talking about?" He said, "I saw that show, and I don't think you're any model, or anything like that. We don't need any problems in this building." And I said, "Well, then I think you're going to have to change your job." But he didn't know that the landlord that rented me the building knew my status. So he ended up leaving, he changed and got a new super. See, normally--that, it wouldn't have made me move. I would have locked myself in the house and not deal with people at all. Like I said, today I'm able to talk up for myself, and you know, things work out usually, when I do the right thing. And I don't have that fear, like I'm gonna have a mob here. Then it was 47:00also, people found out that I wasn't White; that I'm Black and Irish. But that was more questions because I spoke on TV also, about that.

[Interview interrupted.]

SEMBER: In the education work that you've been doing, and being involved in groups like that, what is your sense of the prejudices that people with AIDS have had to experience? Of course it's multiple prejudices--gay, being HIV positive and being known for that.

RIVERA: I really believe it's more a fear, it's their fears of what--Even amongst the gays, there's several friends of mine that I told, "Why don't you go and see if you can some help at the Gay Community Center?" "I ain't going there, they're all gay in there." And I explained to them, "I went through that when I first went," and I said, "When you get there, it's like anybody else." And it was like, "Oh, no, don't want anybody to see me with these people," or on their 48:00jobs. It's what we was taught, certain issues, and the bottom line is that it's their own fear. Fear that they're going to be rejected, all the insecurities kick up. Or even being seen with people that are known to have the virus; they don't want somebody else--They're not too much worried about their own shit. And that's what I said, when you let it out, even for myself--I let it out, it's no more a burden. I don't have to be afraid of it anymore. And then it's on you, it's your choice. And usually that's how I try to approach other people. It's all your shit. And you're not letting other people really show their emotions. That's how I was, I was afraid to say certain things to certain people because of their reaction. And then when I let it go and I just say it, usually it's not what I think it is. It's not all that bad. I get a lot of good out of it. And 49:00you just get a bunch of idiots sometimes that there's no hope for them, and you got to learn how to deal with that, too. Because, my normal thing is to [unintelligible] out, or to start a big scene. But I just say, "I hope you don't have to deal with it, either be it for you or anyone in your family."

SEMBER: Are there any specific incidents that you can remember?

RIVERA: Well, I have a sister that, she doesn't want me around her kids. She doesn't want me there. She'll talk to me over the phone, but don't come over this way. [laughter] She puts it on her husband, "It's not me. It's my husband." And I take it with a grain of salt. That's because they don't deal with their own shit, it makes me angry. I just pray they never have to deal with it immediately, with their children.

SEMBER: You talked about going a lot to Manhattan for the services that you 50:00need. Do you find that attitudes generally in Brooklyn are different from those in Manhattan?

RIVERA: Yeah, more closed off than in Manhattan. I'm more comfortable in Manhattan. I originally moved here from Staten Island, and--I feel indifferent [unintelligible] In a community of Latins, they don't want to talk about it because they just don't want to deal with it. They know it's there and you can't force us into talking about it. Sort of like that. And the other one is like, "Well, if you've got it, keep it over there. I don't want it here." That's sort of like here. Nobody wants to talk about it. In Manhattan it's more open, because you've a mix of crowd there. You know it's [unintelligible].

SEMBER: Why do you think Brooklyn is more closed? Why do you think there are fewer services than there are in Manhattan? Especially since so many people are affected.

RIVERA: My own opinion really is that there are more gay communities in 51:00Manhattan, and if it wasn't for them we wouldn't have anything. They're the ones who got everything started, and they fight for what they believe in. Here, they start and if it doesn't work out, they back off. They're too afraid to run things. They don't want to--how you say--be the cause, because they already feel like they're the cause of a lot of other things. Just let it pass and don't.

SEMBER: What do you think should be done to change that?

RIVERA: More people should speak up. For myself, I'd be willing to speak up, but I should have people to back me up to do that. Several times we started groups here, "Yeah, yeah, we're going start this group and we're going to do this, and then I find out they're sending it to Manhattan. And I don't feel like it needs 52:00to be, I need to be there, because they already have enough. There's people there to speak up for themselves. Here, nobody's talking up on it. I deal with a lot of friends that go to the VA hospital here in Brooklyn, and I think a lot should be done there. That's a government, you know, facility, there's a lot of war veterans there, and I think they should have more than they have. Everybody I speak to that's from Brooklyn usually is in Manhattan. Everybody goes to Manhattan. I've met several people that say the same thing about Queens, there's nothing in Queens. Where the hell are we? We're all over, so why do we have to all go to Manhattan? Why shouldn't we have something? Why can't we fight for here instead of fighting for Manhattan? Not that we couldn't do it all over.

SEMBER: What would you say is unique or special about the AIDS crisis in 53:00Brooklyn, that makes it different from Manhattan or Queens?

RIVERA: Unique? It's the whole hush-hush thing. It's like nobody really cares, and nobody really brings up a reason to care! [Interview interrupted.] Where was I all these years? What part of the world was I in, 'cause it doesn't seem the same? I guess it's due to my own attitude and my outlook today.

SEMBER: It's amazing. The way in which you talk about it, it sounds as though AIDS is not just one part of your life, it becomes a way in which you begin to see [unintelligible].

RIVERA: To see life. It's given me a chance to see life for what it is; its values and everything. That's why people say to me-- [Interview interrupted.] 54:00It's strange, people say, "You sound like you're grateful." I say, "In a sense I am, because it's opened up my eyes and my ears and my senses, and I'm living a life today, which I never did before." I just was a survivor like many of us. And I look at people today and I observe what's really going on. That's what I'm grateful for. That's what makes me want to go on with life. I'm willing to deal with this virus if I've got it. I have to. It's hard for people to realize that, I guess.

SEMBER: We were talking about what makes it unique in Brooklyn. And you said that silence is one of the things.

RIVERA: It's the same thing, dealing with AIDS; then you have to deal with a lot of other issues, which they just refuse to deal with. Nobody wants to see that 55:00what leads up to AIDS, I guess, as far as the addict goes, or the alcoholic, or poverty, you know, the homeless. The area in Coney Island, where my children are at, nobody even really cares, nobody wants to talk about it. I guess it comes to times, well, "This is where I'm gonna live, and this is all I'm gonna have, what the hell's the difference?" A lot of them have a lot of anger, and it's another way of getting even with society.

[Interview interrupted.]

SEMBER: Through all these years of thinking about this and seeing what's going on and working in this, I'm sure you must have some ideas about what you think 56:00should be done to help people with AIDS, to deal with the AIDS crisis, by the government.

RIVERA: Oh, yeah. [Interview interrupted.] They need more centers opened up at the schools, where children could go in and talk, more daycare centers where parents can come in and discuss what's going on with their lives and different circumstances. There are so many different things that they can do, I think they need more people with the virus speaking out at [Interview interrupted.] and for me, what I think is really, wait, to get to the addict, they need more centers opening up, and not so much with all this free condoms and free IV needles and 57:00stuff, because that's not going to get it. That doesn't matter because if we wanted to use it, we'll use it. They probably would get it and sell it. And still miss the whole purpose of it. We need someone to go there that can relate with them, to talk. You know, I deal with their problems and if they want to get better. If they want to do anything that's worthwhile doing; giving back, instead of still blaming. There's a lot of anger out there, a lot of anger. Until they deal with their anger, they're not going to deal with the virus.

SEMBER: What do you think they should do?

RIVERA: They need centers. They need people to go speak that relate. You're not going to send you to a Black Bedford Stuyvesant and tell them, "Look, you've got to do this and that and that. I have the virus, too." They don't give a shit about you. They need a Black speaker in a Black community who can ID with them. 58:00And who could bring in other speakers, and show them that they can mingle and they can mix. But you got to deal with other issues than just go in there and say, "What are you going to do about the virus?" They feel helpless as it is. So that's not going to help. And as far as women, they've got to see to their needs, besides the virus. They have other needs. So they talk to them and find out what's going on with them as individuals, nothing's going to be done. They're going to survive what ever way they can survive. The addict needs the drug, and he's not going to listen to, "That's killing you." The drug itself is killing him. So what makes a difference if the virus comes along? You've got to work with people individually. Women who are being abused just accept to be 59:00abused, so why not accept the fact that I'm dying of AIDS? What's the difference? You've got to make a difference. And you've got to have people who are making a difference today speak to them. Don't send somebody in who's got a job, who's making money, got a home, and really has no problems but the virus. It's like; you don't know what the deal is. The same thing is with rich addicts. We couldn't relate together, because they didn't have to struggle for their drugs. It's the same thing. A person who has AIDS, and if they don't have welfare or something else, how do they survive? What are you telling me? To do something, with what, am I supposed to do something? I don't have a roof over my head. I don't have no food in my refrigerator and you're telling me I have to do something? You need these issues to be dealt with first, and then you bring out--

SEMBER: So AIDS is really--

RIVERA: It's just another thorn; it's another thorn in the bush.


SEMBER: Do you think that that emphasis on those different needs is different in Brooklyn than it is, for example, in Manhattan?

RIVERA: Oh, yeah, yeah. Usually the people from Brooklyn that call themselves survivors, or getting over, or getting by, end up in Manhattan. 'Cause they don't even want to deal with the truth, what's going on around them. They're still not even acceptable in that circle. There's fifteen guys hanging out on the corner over a fire, and they were brought up together and everything, and one of them says, "Oh, I'm going to the gym to work out." He's not part of that group, but they live in the same building in the same neighborhood. You 61:00understand what I'm saying? It's like, if they--anything they look for has to be free, or taken. Nothing they've had has been earned. They don't know how to earn anything. It's little things like that that you have to look at. I remember when I first found out, and I just got off the streets myself, sitting in a group of people that did not know me, sitting there saying, "They must realize I have the same clothes on for a week. They must realize." Not thinking that I needed the help there, not thinking--we was talking--it was like, "Who's looking at me?" Somebody made the move from one seat to another; it was like, "Oh man, do they smell me or something?" That's what was bothering me, and until I dealt with that, I couldn't hear whatever I needed to hear there. And my attitude was, "I ain't going back to that meeting." And it was my own uncomfortability, but I 62:00wanted to reject, "These people made me feel uncomfortable." 'Cause they were sitting there, they had a couple of dollars in their pocket, talking, "Who's going to the diner after? Who's going here, who's doing that?" I didn't have that to do. My thing was; I had to go sleep on the boardwalk and come back here the next day. So how many people sit amongst people and don't know what's going on? How could I stop to think about, "How can I do something about the AIDS virus?" when I had a million other things to worry about? I still had to worry about getting back in touch with my kids, how to face things. And my thing was, I'd rather have died than to face them, because then I had to answer questions.

SEMBER: Have you seen any positive things coming out of AIDS in your life?

RIVERA: In my life? Yes, definitely. Only because I opened up to it, I wanted 63:00other things and I knew I had to work at that to get this. I feel worthy, I feel better, and it's taken time. It's not an easy thing. There's still times, like I said, I get depressed, I get scared, and I want out. A lot of times I sit here, when is this going to end? It's never going to end? What's the use? What's tomorrow going to promise me? That's what I have to always go over.

SEMBER: And in the community as a whole? In the various communities that you've been a part of, that you see yourself as a member of?

RIVERA: Well, right now it's based in Manhattan. I go to Manhattan, I feel the people there make me feel good, and when I get opportunities to come to Brooklyn, I do that. It's a definite--And there's a lot of times I go to 64:00Brooklyn that I don't ever want to be there. I don't want to deal with these people. It's very depressing, and I let them know that, though. The same way they probably don't want me there, some of them. Because their first attitude is, "Who the hell do you think you are?" You've got to teach them that you've got to fight for what you want, and you have to stand up for what you believe in, but you have to have something to believe in, too.

SEMBER: I've been using the word "communities" a lot. The thought has just come to me; do you think that people, a lot of people in Brooklyn who are HIV positive, even think of themselves as being a part of Brooklyn?

RIVERA: Part of it? No, no. They're not part of the community. I was brought up in Brownsville, and I go amongst certain people and I feel very isolated today, but at one time I felt very comfortable there. The same thing, I go to Coney Island today, my kids were brought up in Coney Island. And I beg them constantly, "You've got to get out of here." Because there's no hope there, it's so depressing. And half of my kids' friends are either locked up, dead, or the 65:00girls, half of them have got four or five kids, they don't know where the hell they're going. And a lot of them are very envious of my kids, because my sons are in the music business, they're doing things. But my sons also don't feel comfortable out of that community. They say, like, there's a lot of their friends there. I say, "Yeah, but do you see what's going on here?" They say, "Yeah, but if everybody moves and runs out of the community "And it's true, because it's the same thing I'm saying, but I want to say it from the outside. I don't want to be in there because I don't know if I could stay there in there. And that's what my fear is, for my kids; that sooner or later maybe they'll give up and become part of that. And that's where the fears coming until you change it, but if we all keep running, nothing's going to change. I see them put up new buildings and open community centers, within months they're gone. It's like, 66:00they give it to you and then they pull it back, and it's only because we don't hold onto it, we allow them to take it back. And then people wonder why we're forgotten.

SEMBER: Dolores, what do you hope for yourself, for the future?

RIVERA: For myself? That I leave something for my kids, and I can go in comfort knowing that tomorrow they'll be here, and I don't have to worry about them, that I didn't teach them, or I didn't show them the way. And, hopefully that I'll go on for a long time and that there will be several people that heard me speak and changed their lives around. And one day someone will say, "Oh, I knew her. She made sense. If it wasn't for her, I wouldn't be here today."

SEMBER: You don't say, "I hope for a cure."

RIVERA: I don't believe it, at this point, that there will be a cure. I believe there'll be a cure for future generations, but for myself, no. I believe there's 67:00a lot of bullshit going on with all this testing. I still feel that they use a lot of us as guinea pigs.

[Interview interrupted.]

SEMBER: So you don't believe that there will be a cure?

RIVERA: No [unintelligible], no. I don't believe, while I'm here, anyway. [laughter]

SEMBER: That means that you think about dying.

RIVERA: Oh, yeah. I look at it, for myself at least, when I was active I always thought I would be buried as a John Doe. But today I believe that when I'm gone I'll be ready to go, and I'll be going with respect. And somebody out there will remember me. It's a hell of a reason to be remembered, but it's better than not 68:00being remembered at all.

SEMBER: If there was one thing that, I explained to you at the beginning about how--

RIVERA: I believe until we unite as one, nothing will ever be settled; poverty, the AIDS virus, nothing. Until we become more trusting and become a unit, there will never be hope for life, for a true, healthy life. I believe we have to let God in, and I believe that we have to do whatever it is united; otherwise no one will see any future. Be it war, be it anything, we have to do it together. I believe that, for myself, I hope that I start that change because I believe 69:00today that it took many reaching out to me to get where I am today.

SEMBER: Thank you.

RIVERA: Thank you.

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Interview Description

Oral History Interview with Dolores Rivera

Dolores Rivera, a fifty-one year old Irish and African-American woman, was diagnosed with AIDS after a bout of pneumocystis pneumonia in 1986. Rivera was raised in the Brownsville neighborhood of Brooklyn. Except for a brief stint in Staten Island, she lived in Brooklyn. With all of children grown into young adults, at thirty-six she began abusing drugs, became an addict and went through years as a homeless IV drug user. She believed she was infected with HIV through IV drug use, although she knew that her last sexual encounter was with a man who had the virus. After her HIV positive diagnosis; she went into rehab, got off the streets and began outreach work within the Brooklyn IV drug-using community. When this interview took place in 1992, she had an apartment in Bensonhurst. Rivera was babysitting one granddaughter daily, including while this interview was recorded. By 2004, the year she died, she had served on the Board of Directors at Iris House.

In the interview, Dolores Rivera tells her story of childhood in an abusive home and how that profoundly affected her adulthood. Besides her vivid descriptions of her years as a homeless IV drug user, she reflects on how she felt and thought about herself. She discusses how her life changed remarkably after her diagnosis. Rivera shares her awareness of AIDS issues and gives her impression of the different impacts that AIDS has had on various Brooklyn communities. She also has some ideas about what should be done to better manage the crisis. The interview is occasionally interrupted by Rivera's childcare. 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.


Rivera, Dolores, Oral history interview conducted by Robert Sember, September 11, 1992, AIDS/Brooklyn Oral History Project collection, 1993.001.16; Brooklyn Historical Society.


  • ACT UP New York (Organization)
  • Gay Men's Health Crisis, Inc.
  • Rivera, Dolores


  • AIDS (Disease)
  • AIDS activists
  • Drug addiction
  • Family life
  • HIV-positive persons
  • Homeless women
  • Self-help groups
  • Social group work
  • Stigma (Social psychology)


  • Bensonhurst (New York, N.Y.)
  • Brooklyn (New York, N.Y.)
  • New York (N.Y.)


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AIDS/Brooklyn Oral History Project collection