In this interview, Nilda talks to TheBody about being diagnosed with HIV, becoming sober, and protesting for the ongoing needs of her HIV-positive community in California.
Terri Wilder: Nilda, can you tell me about the first time you remember hearing about AIDS?
Nilda Rodriguez: Yes. When I became clean and sober in [the 1980s].
TW: And how did you hear about it? Did you read about it on the news? Did somebody tell you about it?
NR: I heard it on the news. And then once I became sober and I started working in the community of people who had used drugs and stuff like that, then I heard about HIV and AIDS in the sober community.
TW: So what were people saying about AIDS at that time that you first heard about it?
NR: Well, they were telling me how they were sick and that they had contracted AIDS, and that they weren’t HIV positive very long without getting AIDS immediately. At that time, I decided I better get tested, and that’s what I did. I got tested and found out I was HIV positive.
TW: Can you tell me about that period of time, like what was happening in AIDS in the area? Were there services, or was there a lot of discrimination?
NR: Oh, a lot. A lot of dying, a lot—very limited health care. And the health care you did get was what was at that time … there wasn’t a lot of doctors dealing in it. And there was, you know, women were hidden. A lot of women didn’t know they were positive, never thought they could be positive. I found women one day hidden in Long Beach [California], which is a very expensive community, and they all were Caucasian and had money, and they were all positive. And that’s how I heard about women in the HIV community, because I was dealing with men. I was running a support group for men, and men were just dying around me. And then, all of a sudden, at Shanti I met women, and it was limited. I met women. I couldn’t believe that there was women who were around who were positive.
When I found that out, I was devastated in many ways, because it was, what could I do? What could I do? That’s when I decided I had to do both, I had to work with both communities. I had a men’s group in LA, I cannot remember the name of it. I entered a women’s group in LA, and I worked at Shanti with men. It was a very, very heavy experience for me, because not only were there women like myself, but there was also a lot of men, mostly men, who I dealt with. But all of these women that I knew, all of them passed, all of them died. It was sad, it was hard. And I was dealing with … eventually I was going to be in their place. You know, “When am I going to get AIDS?” was in my head. Sometimes I felt like I wanted to just get it over with it, but thank God that was not my experience.
TW: So when you were diagnosed in 1986, were you out as a lesbian at that time?
NR: Yes, I was. I was.
TW: So what was your experience being a lesbian with HIV? Did people kind of, were they surprised that lesbians could get HIV? What were folks’ reactions when you shared your status?
NR: Oh, it was like, how could you get HIV if you’re a lesbian? You’re not a lesbian. And I would be like, “Oh yes, I am.” I said, “I was bisexual for a period of time in my life when I was young.” I came out when I was 17 and was with men at the age of 17. So I was doing both. But I knew there was a strong part of me that was more lesbian than I was bisexual. In 1988, 1989, I fully came out as a lesbian. I involved myself with a lot of lesbian things in LA, and still doing work in HIV. And that’s when I started meeting lesbians and straight women that were positive. It was very, very—not only surprising, but also very comforting that I wasn’t alone as a woman.
TW: So what made you decide to get involved in AIDS activism?
NR: I got into it right after I found out I was positive, because I became clean and sober before I found out. And when I became clean and sober, I became very involved in the community of—you know, we were doing 12 Steps and all that—and being involved in that is when I met a lot of men who were positive. And there were positive groups in the community of sober people and hidden women who were clean and sober. So when I decided to be clean and sober in 1987, a few months later, I found out I was positive. So my activism started in 12-Step groups, AA, NA.
TW: So sorry, were you diagnosed in 1986 or 1987?
NR: I actually, I was diagnosed in ’86 and started involvement in ’87.
TW: OK. So what kind of activism have you done? Like, have you gone to protests? Have you helped change a policy? Tell me a little bit more about your activism.
NR: Well back in the 1980s in LA, there was a lot of marches. A lot of rioting to the government. A lot of involvement with protesting. You know, pictures of ourselves, here we are, men and women who are HIV positive. I was involved in getting more health care for women who were positive, because you didn’t have doctors who treated women per se, they would just see men. We had to find doctors who knew how to care for HIV. Doctors who were surprised we had become HIV positive.
It had to be all in the gay community. That was how it all began. And that’s how I got involved. Being a lesbian, I was, you know—I learned a lot from the gay community. I learned a lot about what was HIV, how I was affected. And that I had to fight. I had to get up there and fight, because if I didn’t, we were going to be lost to the numbers. And names that don’t mean anything. We, the women’s group, we did marches of women, and it was hard to get women to come out, because they were married, a lot of them. And a lot of them were hidden, they didn’t want people to know. They didn’t want their families to know. They lived in a “hidden death,” as some would say. They were going to die, and it was all hidden. Their parents didn’t know. This is men and women, but women really had it harder, because some men just did not embrace us, and that was really hard on us.
It was a gay men’s thing, and it was embraced as a gay men’s disease, so it didn’t have women involved. And so women had to create their own community—and that’s what we did in LA, we created our own community. And when we created all that, I started to meet women in New York back home and women from other states that were HIV positive. And still to this day, I have communication with women in the South who are not out to their families or to anybody. They’re active, but they’re not out to their families and they’re not very public. They do behind-the-scenes work in their community. It’s really shocking to still know and still see women having to be hidden away and still treated like trash, because they’re women.
To me, it’s still as scary today as it was yesterday.
TW: Can you tell me about a protest that you went to and what were you fighting for in a protest?
NR: God, I’ve been to so many protests. Well, I’ve been to the protests in Sacramento—we met with California representatives, that stood out to me because we weren’t getting any money that we needed locally, and we needed help from our own government in California. In Northern California, as well as in Southern California, we were having a lot of backlash and not getting what we wanted. We had to fight for things we needed in our city. Federal money was not enough. And the state has to get involved, too. So those are things that we fought for.
The biggest one was a rally in Sacramento, California, and we marched around housing and around things of that nature—and today we still do that. Today there are still groups, women’s groups, men’s groups, mixed groups who go to Sacramento still, who go to fight for monies. Just because we’re living longer, doesn’t mean we’re not going to die from HIV, and positive issues. A lot of people who are positive are homeless.
TW: Have you ever gotten any criticism for being involved in activism?
NR: Oh yeah. They’re doing a thing in LA, a big get-together to fight for HIV and AIDS, things that we need—medicine, more doctors, things like that. And we got, oh my God, we got criticism left and right. Booed. We got called “faggots,” being called all kinds of names. You know, all kinds of things, dirty things. “Eff you, you should be dead.” It was awful. All those words hitting you and having to slide off your back was very hard. It’s hard to hear that. That your own people would say that to you, and then be called n****** because you were with a Black group. To this day, some people just don’t get it.
TW: So it sounds like racism and homophobia is still something that, you know, people are using to attack activists. So there’s this intersection between racism and homophobia and your ability to stay strong and, like you said, let it roll off your back so you can keep focused on what you’re trying to do.
NR: Yeah. You don’t see it like you used to see it back in the day, but it still happens. Sometimes it just happens that you’re doing a walk and somebody’ll pass by and they look at you, and they ridicule you and do things to shame you. It only takes one person to bring you down.
TW: But do you get criticism from people that you personally know, like your family or friends, or are people supportive of you?
NR: I’ve never—I’ve gotten great support from my family and friends. My mom died just before I found that I was positive. So she never found out. My father died, you know, before that. They never knew. My sisters and nieces and nephews, I came out to them at a family get-together, and I knew what I was gonna say. My friend who was my roommate, who was negative but was a very big activist and worked in the community, he was there with me to tell my family. And they were all crying, because we all thought I was going to die. But that’s not the case. I’m still here.
TW: Yeah! So what are you most proud of in terms of your activism?
NR: Well, I would say I’m the proudest of when I started working in the community down in LA. Those were my proud, proud times because it was all so new. And it was, I mean, a lot of tears. And I was proud to run support groups and learn and do things like that in the community. It was over 200 deaths that I had either tended or lost people in—over 200 deaths. And it’s sad. We die from illnesses that we might not have gotten if we were not positive. You know, all of a sudden, it’s cancer, but it wouldn’t have been cancer at such a time in your life if it weren’t that your immune system was different. Because your immune system is strong, but not as strong as it should be or could be.
TW: So how is your health now?
NR: My health is OK. My T cells are good, and I’m doing well. My viral load—no, it’s not low, it’s high. I’m doing really well, but the only thing is, unfortunately, I was in a bad car accident, and I’m in a wheelchair most of the time. But I’m still active, not as active as I used to be. So I’m getting back involved in activism, and I’m doing well.
TW: So what kind of activism do you have coming up for you? Is there an important issue that you’re concerned about or working on?
NR: We’re doing what we call the planning council, which was a council that gets together with monies that come from HRSA [Health Resources and Services Administration].
TW: So it’s the Ryan White Planning Council?
NR: Right, right. The money from the government.
TW: So how often do you meet with that group?
NR: Once a month.
TW: And how long have you been on that planning council?
NR: Since the year 2000.
TW: Great. And what are some of the things that you guys are working on? What are you concerned about? Like, what issues are impacting your community?
NR: Well, we’re looking at housing, that’s a very big issue. Looking at the work to get people to use their medications, getting people to get medications, looking at how to get people better care. Those are issues that pertain to an HIV-positive person—health care, we allocate monies for different things.
TW: So you’ve really seen a lot since the ’80s, been involved in lots of different things. Is there anything else you’d like to share with me about your activism or any of your thoughts about what’s happening in HIV before we close the interview?
NR: It’s been a road of happiness, a road of sadness, and it’s been a road of education. I’ve met so many people, I’ve done so many things in the community of HIV and AIDS nationwide. I’ve been to groups in Washington, and I’ve been to the big AIDS community—
TW: You mean, the international AIDS conference?
NR: Right? My memory’s not that good. I’ve done all those things and I’m just scared that things are not going to—that things will be lost in our community. You know, we’re going to lose a lot of things. I don’t know why I feel that way, but I do. I feel that, people feel like our community, because we’re living longer, that we don’t need the same things we needed before. And that’s so far from the truth. I know that in Nigeria and places like that, the AIDS epidemic is extremely high, and I know that it’s necessary that we are international, but I also think it’s important we don’t forget about our local people.