“At Home With” podcast & transcript

https://www.thebody.com/article/at-home-with-bruce-ward

PERSONAL STORIES FROM THE HIV COMMUNITYINTERVIEWS

Charles SanchezCONTRIBUTING EDITOR

Dec. 9, 2021

Bruce Ward is an author, actor, educator, and HIV advocate who has been chronicling HIV and AIDS since early in the epidemic. His creative work includes his solo show, Decade: Life in the ’80s, performed at festivals and universities across the country; his award-winning play, Lazarus Syndrome; and acting in television and film. (You might just catch him in a Law & Order episode from a few years back!) Bruce has written articles for HuffPost and A&U magazine, has a memoir just waiting for a publisher, and even sings with the New York City Gay Men’s Chorus, which are just some of his talents, interests, and accomplishments. Bruce is a terrific guy, warm-hearted, smart, and charming as hell. I was grateful to share the air with him on the Dec. 2 broadcast. Here are some excerpts from that conversation.

World AIDS Day means many things to many people, but I think it has special meaning to those who have been living with HIV for decades. I wanted to honor long-term HIV survivors by featuring on the weekly Instagram At Home With broadcast.

This interview has been edited for content and clarity.

Charles Sanchez: How are you? What’s going on?

Bruce Ward: I’ve had a busy World AIDS Day week. World AIDS Day is like Christmas for people who are positive, and especially long-term survivors. It’s like one day we get to tout our wares and hope people can pay attention a little bit.

CS: You live in New York City.

BW: Yes. I’m right across the street from the Chelsea Market, by the High Line and Meatpacking District. I haven’t had to close my blinds in a year and a half because of the back offices. There’s really nobody there. Once in a while, a janitor walks by and I’m like, “Oh, I better put some clothes on!”

CS: What did you do for World AIDS Day?

BW: Last night, I participated in a really wonderful event that was organized by the author Tim Murphy. There were 10 HIV-positive people of a wide variety, diversity, ages, gender. We all read from authors who had died of AIDS in the ’80s and ’90s. We read like four minutes, and my piece was by a writer named David Feinberg, who wrote two amazing—oh, you would love them, Charles! They’re sarcastic and witty and bawdy and sexual. Unfortunately, he died very early, in [1994]. 

His second book, Spontaneous Combustion, was published in [1991]. I read part of the epilogue, which is his prediction of what the world would be like when the cure was found in 1996, which was very prescient. I mean, no cure, obviously, but that’s when the cocktail came out. Yeah, it’s very bawdy, it’s mostly sexual. It’s like, gay men will throw away their condoms and give them to the artist Christo to wrap around the Empire State Building.

CS: Well, that would be great. I’ve always said, if they find a cure for AIDS, there’s going to be fucking in the streets. I hope, anyway! I hope I live to see the day.

BW: I feel like we’ve kind of adjusted in small ways to it, with the cocktail, then with PrEP and U=U. So I don’t know if it would be as dramatic as it would be if that had been the first thing that happened.

CS: How long have you been living with HIV?

BW: Tim pointed out at the reading last night, I’m probably the longest-living HIV-positive person that was there last night. Anyway, I know exactly when I acquired the virus, in 1984 in Honolulu, but they didn’t know what caused it back then. They knew it was probably a virus, but they hadn’t discovered what was called HTLV-III at the time. The next year, there was an antibody test. In 1986, I was officially diagnosed. It changed from the very unwieldy HTLV-III/LAV to HIV.

CS: I don’t remember it even being called HIV for a long time. AIDS was the word that was always used in the media. Whenever people got sick, it was, “I’ve got AIDS,” or “You’re going to get AIDS”—I mean, it was AIDS. I think the transition from using “AIDS” as the word that we see in the media to now, it’s sort of a kinder, softer “HIV.”

BW: I think it was called AIDS at first because HIV hadn’t been discovered. In ’86, once it came out, the whole AIDS moniker, a lot of it had to do with eligibility for insurance and disability, things like that. I categorically was diagnosed with AIDS, and once you’re categorized as that … you know, it’s like being in recovery: Once you’re an addict, you’re always an addict. And, well, it’s just a word. But you needed to have under 200 T cells at the time to go on disability and to get some insurance.

Tim also wrote an article recently for TheBody on discrimination, and he quoted a story of mine.

I had a discrimination suit against the New York City Health Department Dental Clinic, which was ironic because I was working for the health department. I went to their clinic, and they had me sitting in a chair for hours. Then they said they couldn’t treat me because of HIV. They would have to scrub the walls and the floors and autoclave the instruments for 24 hours, which was not true. So there was an eventual lawsuit, but at that time, a reporter from ABC television heard about it. I wasn’t as vocal about my status as I am these days. This was 1986. I asked the reporter, please, if you’re gonna call me anything, I’m a person with HIV. I don’t have AIDS. Sure enough, I watched the news program that night, and the caption said, “Bruce Ward, AIDS patient.” Of course, a relative in New Jersey saw it and called my mother. My mother knew about my status, but to see me on the news as an AIDS patient!

I have another story. It’s someone close to me, who’s known I’ve been positive for a very long time. We were talking about something, and I mentioned, “I, as a person with AIDS,” and he looked at me in shock and said, “You don’t have AIDS, you’re HIV positive.” That’s when I realized that there’s a distinction that [is] something that people have with the word. It was OK if I was HIV positive because there’s the treatment now. “AIDS” had such a connotation to it that it wasn’t the same thing to him.

CS: I think that there is great power in acknowledging your diagnosis as being that of AIDS, as was mine. That’s my diagnosis, and the HIV is like, yeah, that too. I mean, it’s all together. I think that in this day and age, it’s really good to let people know [that] people still get diagnosed with AIDS. People still have AIDS. There [are] still people dying of AIDS around the world and in this country. People need to be reminded of that.

BW: There [are] still people living with it, you know? I write primarily about HIV and AIDS now, and I really focus on the first 15 years, because I don’t want the memory of those years to disappear, because it could so easily if you look at the Holocaust deniers. It’s very important for me to remember those years. I lost 93 friends in college because I worked in the field, so I knew lots of people. 

But the other thing I focus on is long-term survivors. I know we’ve had this discussion and you’ve talked about the word survivor, and of course, yes, we’re all survivors. Maybe there’s another term we should be using, like, “fabulously living with HIV” or something. But even within the HIV and AIDS community, there [are] some different strata. We all should be one big family. You come together on any of these issues, but there are different issues for long-term survivors diagnosed before 1996, in terms of the illnesses we’re getting and our reaction to the AZT. I was on AZT and a lot of toxic medications.

I had a life coach for a very brief period of time. He said to me once, “Maybe you don’t need to use that term, ‘long-term survivor,’ it’s kind of off-putting to people. I understand that, but I also feel like it’s a way for people who have been living with HIV for a long time to have some notice about ourselves and to acknowledge our existence. Because I think many of us feel very dismissed, and especially as we’ve gotten older. Many LGBT people feel dismissed as they get older anyway.

CS: I think as far as the phrase, “long-term survivors,” in regards to people living with HIV, [it] envelops history. It envelops a unique experience of having so many of your contemporaries, boyfriends, friends, whole communities of artists, etc., that were vanquished. At a time also when we, as a country and as a world, really didn’t even want to talk about AIDS or HIV. I remember people saying, “Well, they deserve it. Whoever gets it, they deserve it.” I hope we’re a little bit past that now. I love that you’re acknowledging the health disparities that are unique to people living with HIV that are older, as I am creeping up into an age category that isn’t as pretty as, you know, 35.

BW: Yes, well, you’re always going to look pretty, Charles.

CS: Oh, wow. When we talk about long-term survivors, it’s not just that we’re getting older or that [we’re] afraid of things being forgotten, but it’s also the wealth of experience that you bring with you.

BW: People are used to honoring the dead and thinking about the people who died, which is extremely important. There’s less focus on other people who are still here, the people who went through it. It’s not just about the grief for us. It’s about the effect that living with the virus has had on our bodies and our minds and emotions. I’m one of the very lucky ones. I’m not worried financially. I live in a great apartment. There’re many people out there who got isolated, not living in New York City or other large areas. Thankfully in the last few years, there [have] been some wonderful communities that have cropped up.

The ones I know about are on Facebook, and that’s really helped me and a lot of people to connect finally for the first time. I consider myself to be held together by Elmer’s glue and duct tape. I’m the poster boy for everything that can happen. I’ve had both hips replaced. I have diabetes. I have neuropathy in my toes, fatigue, PTSD or depression, or whatever it is they’ve categorized as AIDS Survivor Syndrome. 

There are issues out there, and it’s hard to talk about with people and with friends because either they want to express their pity or they don’t know what to say.

CS: Yeah. I understand that. This year was my 18th year [living with HIV], but I was alive during the AIDS crisis. I was in New York. I was a young actor. I was doing all that kind of stuff, even though I wasn’t involved in the HIV community in that way. How do you feel, as someone who acquired HIV early on, about someone like me, who—I don’t consider myself a long-term survivor, I don’t talk about myself that way—or people who are involved with the community but who just don’t have HIV, but who have been a part of the fight the whole time? They’re also long-term survivors. How do you feel about them acknowledging themselves that way?

BW: I’m in a group called Honoring Our Experience, it’s San Francisco–based. We talked about that quite a bit because there [are] not just people who’ve been living with HIV, but also the allies. It’s really important to recognize that.

CS: I think there’s room for both. We’re all also still living with HIV or fighting the good fight, like you said. I think those are really important conversations to keep having.

BW: Absolutely.

CS: What are you working on right now?

BW: I do have a memoir that I wrote and finished seven years ago. So if anyone has a good agent or a publisher … ! I used excerpts from the memoir in the magazine I’ve been writing for, A&U magazine. I did 14 chapters. It was my version of Tales of the City or Dickens. It’s basically about me coming to New York City as a 22-year-old gay boy coming out for the first time, just as AIDS hit. I was also in very interesting places at certain times, kind of like Forrest Gump. I worked for the city health department hotline when Rock Hudson died, and I saw how dramatically that changed public perception, really overnight. 

I have a play called Lazarus Syndrome that’s had a few productions.

We all have our own voices, and I think that’s important. That’s what keeps me going when I think I want to get this published because there are other AIDS memoirs out there, but they’re all different. Some are more political, some have more celebrities involved. Mine’s sort of coming from the Joe Schmoe point of view. You know, Joe Schmoe comes to New York as a gay boy at 22 and all this happens around him. I did play an active part, I became the director of the CDC National AIDS Hotline, and that’s a chapter in itself. I’m sure it has some scoop in it, but I’m not sure how many people would be interested outside of the CDC or AIDS community.

I feel like it’s so important to share these stories, to share all of our stories. I don’t have children. One thing I can leave behind is just some chronicle of the time we’re living in. And I certainly encourage anybody who’s watching this to write your own story. No matter what part you play in the epidemic, or even whatever you have to write about, get to it. It’s important. Your voice is important.

CS: Wonderful. Thank you so much, Bruce. You’re such a wonderful guy. I’m so glad to know you’re in my community and in my life.

Charles Sanchez

@FabulousSanchez

Charles Sanchez is a Mexican American, queer, writer/director/actor/producer living with HIV. His award-winning musical comedy web series, Merce, is about a fabulous HIV-positive guy living in New York who isn’t sad, sick, or dying.