More than ok. Boomers remember the Beginning of the AIDS Epidemic
I have always had my own fascination with this time period. As I was beginning my own journey of self, the book nerd I was, I read tons of fiction on the gay experience. Books like Tales of the City, Angels in America, And the Band Played On. Authors like Edmund White, Felice Picano, Alan Hollinghurst all stories about sexual awakening, coming out and many with an end result of an AIDS diagnosis. Even 20 years removed from the beginning of the epidemic, AIDS was at the forefront of my mind. I watched movies that depicted the treatment of AIDS patients, families taking partners from partners, people left to sit in their own filth because medical staff was too afraid to touch them. It did and still does give me goosebumps to watch or hear these stories discussed. I was never directly impacted by AIDS or HIV, but I always had a sympathy for and awareness of what it must have been like to be a gay man during an epidemic widely affecting gay men. The stigmas and hate this generation of men faced both shocks me and makes me super proud of their resilience and strength. They paved the way for me and many others to be able to come out comfortably. To wear platform sneakers, hold my boyfriends’ hand in public and get married to a man. Here is a piece of their story.
Misinformation, Mistreatment and Lots of Myths.
From all accounts it started out of nowhere and spread quickly. At the time, it seemed to have its sights set on a specific type of person and it was lethal. In the early 1980’s, men began checking into hospitals with uncommon medical conditions and failing immune systems. Gay related immunodeficiency disease (GRID) first used in a New York Times article, quickly became the diagnosis or “gay plague” because the main population initially affected by the disease were gay men. During this time of uncertainty, medical professionals were untrained and unaware of what was causing this new disease and how to keep it from spreading. There are stories, books and movies reflecting on the ways in which patients were mistreated during the earliest times of the epidemic. It took over a year for the disease to be renamed to AIDS.
Leslie Washington, a community activist, and loyal Broward House care guide remembered when he was first diagnosed with HIV. At the time of finding out his status, Washington had gone to the hospital because he was sick. During his time in the hospital, he found out firsthand how the stigma of HIV effected his treatment. “I had a procedure that I needed to have done. When I went to the hospital for that, they said, do you want an HIV test? I said OKAY, just off the cuff, what the heck? They did my HIV test. I had my procedure first and nurses and staff were coming and going and being really nice and generous. ‘Hey, you need anything. We got you.’ When my test results came back, I'll never forget.”
As Washington was recovering from his surgery the doctor waked in with six students as the location of the procedure was a teaching hospital. The doctor told Leslie that he tested positive for HIV. “I felt like it was ‘HA HA’, you have HIV! It was almost like a gotcha statement.” Washington remembers the level of care he received changing drastically after his diagnosis. “I was laying in my room, and I was crying. They brought me food. It was all they brought me. The nurses never came in to take my temperature. No one came in to get blood. No one came in for anything outside of what they had to come in there for,” explained Washington.
Not long after this experience with the doctor and students Washington decided because his care had taken such a turn, he would be better of checking out and healing at home. “I remember it was like a Thursday and I told the doctor that Thursday, I said, listen, I don't feel like I'm getting good care anymore. I said, so I need to leave here. I need to get out of here.” Washington was released the very next morning with no follow up treatment plan or medications.
For Tony Duncan, Care Counselor at Broward House being diagnosed HIV positive later in the epidemic in 1988 helped some with his treatment in care. “It was anonymous testing, and it was all over the place by now. It was still focused on gay men or the homeless gay population. It was easy to get tested. Fortunately, I was in California when I got diagnosed and fortunately, I was linked to sensitive doctors that tried to comfort, console or assure me that I was going to be okay.”
As more men, hemophiliacs, and intravenous drug users began getting admitted into hospitals, stigmas began to develop. But the stigma around the disease wasn’t limited to the general public, it also permeated healthcare systems around the world. Many healthcare workers were afraid to touch patients diagnosed with AIDS, sometimes refusing to provide treatment. “Even as more information about the virus was discovered, patients were often isolated at their last stages of life, receiving reluctant treatment by healthcare professionals who hid behind layers of protective clinical uniforms.” (New York Times December 14, 1985, Ward 5B.)
Finding a cure, treatment to keep people alive and providing accurate information on how the disease was spread did not appear to be a priority of the federal government. Finding accurate scientific information was hard to come by. Almost a year after the epidemic began significantly spreading it was still believed that only specific people were at risk for contracting the virus.; the 4 H Club, hemophiliacs, homosexuals, heroin users and Haitians. It would not be until 1983 that it was widely believed that everyone could be at risk. This was when it was found that heterosexual woman who had sex with infected men were at risk of contracting the disease. There was an effort to advertise safe sex and condom usage as a way to protect yourself targeted to the gay population, but federal money was not allowed to be placed towards advertising that was specific to the most at risk group. “Congress explicitly banned the use of federal funds for AIDS prevention and education campaigns that "[promoted] or [encouraged], directly or indirectly, homosexual activities" (the legislation was spearheaded by conservative senator Jesse Helms and signed into law by President Reagan).” (Smithsonian Magazine December 4, 2013)
Most survivors of this time relay a similar message. “There was absolutely no information. The information that we got was from people on the street, people that had some type of contact with someone that had it,” said Washington. “We got no real public information. There was nothing on TV. There were no agencies like Broward House. It was very hush, hush and kept quiet because of the stigma of HIV.”
For Gerry Fisher, Care Counselor at Broward House finding information on AIDS was equally as difficult. The epidemic began as Fisher was just peeking his head out of the closet. With little information to go on about AIDS, he remembers, “being a new guy to the scene, I didn't realize that if you make out too hard you get beard burn. Then it got infected. I went to the healthcare at the university, and they treated it. I was worried that the beard burn could be a sign of AIDS.” Luckily, Fisher had access to an LGBT friendly clinic, the Fenway Community Center in Boston. It was here that a nurse spoke to the newly out of the closet patient, talked sex, and provided more information on AIDS. Fisher said, “he helped me understand things and he gave me education about AIDS.”
Fisher mentioned a scathing White House Press Conference that reflected the opinion of the government regarding AIDS at the time and limited information being provided to the public. In 1982 a press conference with then President Ronald Reagans’ Press Secretary Larry Speakes was held. The lack of action, information and sympathy is clear in just the first few lines of the back and forth. (Washington Post, How Attitudes Have Changed, December 4,2013): Q: Larry, does the President have any reaction to the announcement—the Centers for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases? MR. SPEAKES: What’s AIDS? Q: Over a third of them have died. It’s known as “gay plague.” (Laughter.) No, it is. I mean it’s a pretty serious thing that one in every three people that get this have died. And I wondered if the President is aware of it? MR. SPEAKES: I don’t have it. Do you? (Laughter.) Q: No, I don’t. MR. SPEAKES: You didn’t answer my question. Q: Well, I just wondered, does the President— MR. SPEAKES: How do you know? (Laughter.) Q: In other words, the White House looks on this as a great joke? MR. SPEAKES: No, I don't know anything about it, Lester. The interaction continues, jokes that the President did not have the gay plague are mentioned and the press pool laughed. 600 people had died, and people were laughing. Little was known about the new disease and no information was being shared. During the first congressional hearing on AIDS in 1982, one member of the press showed up to report. One. President Reagan would not mention AIDS until a speech in 1985.
Duncan said of the information being shared, “Here in Fort Lauderdale, I was at the club, the Copa, it's a predominantly gay club. I had a lot of friends there and one of my really close friends said he had a roommate that was dying of AIDS. This was just idle conversation. That's the first time I had heard of it.” By the time he started hearing about AIDS in the news he remembers, “At that particular time AIDS was for gay men and that's just how media had it hyped up. It was gay. It was a gay man's disease. It was the plague. It was for being gay. That's what the news here kind of expressed. What they implied.”
Community member Joel Buchalter was living in New York City in the 1980s, at the time an epicenter for the virus spread. He remembers, “They were talking about the gay plague. It didn't have a name at that time. We didn't know anything about it. The state and the government certainly didn't know anything about it, didn't want to know anything about it.” The lack of accurate information left many gay men thinking it was just a matter of time before they got sick. The first thing Buchalter remembers thinking when he started hearing about this new disease was, “are we going to die too?” Buchalter went on to say, “We had heard some people that were already dying. It was just paranoia. A lot of paranoia.”
Julian Alterman, Care Counselor at Broward House saw the impact of the epidemic firsthand living in New Jersey and spending time in New York City during the peak of the epidemic. He remembers the local news mentioning there were people dying in NYC and not providing much additional information. “I remember it being really secretive or just untrusting with the government; that gay cancer, and this and that about GRID. You didn't trust what you were hearing,” said Alterman.
The myths and stories about how AIDS, a gay disease, were easy to come by. Fisher remembers the different stories he heard. “Maybe it's in the poppers. Maybe there's a lab in Long Island and the government developed it and they've released it as a kind of warfare against gay people. Don't share drinking glasses. There was, you could get it from kissing.” Then there were his personal experiences with the stigma and misinformation that was spreading. In 1983 his then boss brought his newborn baby into the office. “I just kind of went up like, Ooh, hello and then walked by. My coworker later said the boss was freaking out because he wasn't sure if I touched his baby.”
Even with the realization that AIDS could impact people from all different backgrounds, races and religions, strong stigmas remained true. “Nine years into the AIDS epidemic, most of the nation's physicians are still failing to take part in the fight to treat and control the deadly disease, many health experts say. Many physicians decline to accept new AIDS patients. Others fail to take sexual and drug histories from patients, and neglect to counsel them on how to avoid infection. (New York Times April 30, 1990 AIDS War Shunned by Many Doctors). Per the CDC, by 1992 the AIDS epidemic had become the leading cause of death among men ages 25-44, killing 35,590 United States citizens. The number of deaths is thought to have peaked in 1995 followed by a decline with new medications and behaviors in treatment.
This is not to say all medical workers treated AIDS patients poorly. Ward 5B in San Francisco has become synonymous with their emotional and caring support of the community they supported during the beginning of the epidemic. They allowed family, partners, and friends to visit and sleep over in the ward to visit and care for their ailing friends and family. Other physicians fearlessly treated patients at the time not knowing how the disease was spread and risking their own safety and that of their family to treat sick patients.
Strategies and research around AIDS were slow to start with a small handful of dedicated doctors and scientists working to navigate the new epidemic. But hate guided the way. According to a Science Mag article online, “People who worked for the U.S. government also had difficult terrain to navigate when the epidemic surfaced. As James Curran, then with the Centers for Disease Control and Prevention (CDC) in Atlanta, explained, Reagan had just come into office buoyed by the conservative Christian Coalition of America, which saw homosexuality as a sin. (Baptist minister Jerry Falwell, co-founder of the Moral Majority, once said, “AIDS is not just God’s punishment for homosexuals. It is God’s punishment for the society that tolerates homosexuals.”) (Sciencemag.com, At Gathering of HIV/AIDS Pioneers)
As time progressed and more money was funneled into research, the advances of treatments and new medications it is the remaining stigma that keeps HIV such a high-risk disease. A 2009 article from the AMA Journal of ethics states, “Almost 30 years after the onset of the epidemic, HIV stigma and discrimination—fed largely by ignorance and animus—persist and continue to have a forceful impact on people living with HIV.”
Washington agrees with these sentiments and believes the stigma is less obvious then in the past, but that it still exists, “People seem to be, ‘seem to be’ more accepting of people that are HIV positive. I think that the change that's coming is knowing that non-detectable means non transmittable. That may help. When I'm testing people, they're negative and I asked the question, have you ever slept with someone that's positive. They say, ‘NO!’ It’s just the feeling that "I" would never do that. Never in a million years, if someone told me they were positive, I would not have sex with them. That is their choice. That is rightfully their choice. But yeah, I don't think in that respect, it has changed.”
That message rings true with Alterman, a former Dentist. After being diagnosed with HIV in 2008 Alterman remembers the anxiety he felt about clients and community members finding out his status. “It fueled my getting out of dentistry when I tested positive. I was afraid. I knew I'm not going to give it to people, but if someone finds out and then it gets out, people aren't going to come anymore because they don't know (about HIV).”
After his diagnosis Duncan felt and witnessed the stigma of living with HIV. “Oh, it's crazy that 30 plus years they (stigmas) can still exist. Back then, did I experience it? No, because like I said, I kept it to myself and my family knew, and they were accepting.” His mother was actually the person who influenced him to get tested and the first person he called when he got the positive result.
Aside from his family, he did not disclose his status to anyone else and he wasn’t alone. “The things that we know about the Kaposi sarcoma, the spots and everything. You started to look for that on people and that was your indicator that, that person had AIDS. Because back then it was still considered AIDS. People around me after the fact I found out died because they had AIDS that I never knew had it. Like we were friends, but they didn't disclose. And I didn't disclose either, you know?”
As for the present, Duncan and Washington agree. We have a long way to go. “30 years plus the same thing. I work in the field of HIV. I still run into people that have no idea how to get it. I still run into people that still think that they can get it from casual kissing, from drinking,” said Duncan. “As much education as there is now. I mean, you can Google it.”
Thinking back to what it must have been like to be a gay man, living your life, trying to date, and doing all of this cautiously because your lifestyle, what you were born as, was being attacked by strangers as immoral. Hiding your sexuality. Keeping your partner a secret from your family in fear of being disowned. Then add to this your friends are dying. You could die and you don’t even know how to stop this from happening. I can’t imagine dealing with in addition to the normal emotions of coming out. Gerry said in my interview with him, “I remember thinking it would be really cool if I could reach 30.” Could you imagine being in your 20’s worrying about making it to 30. I can’t.
Lots of Life. Lots of Death.
As the numbers of those being infected and dying from AIDS increased starting with 451 in 1981 to more than 50 thousand by 1995 in the United States according to CDC statistics, entire communities of gay men were decimated. New York and San Francisco were hit hardest, but Miami and other metropolitan areas were not far behind. Washington who was in Ohio during the beginning of the epidemic and said, “They were here today and gone tomorrow. People you would see, let's say the lesions and stuff on their skin and then the next thing you knew they were gone. They would pass away and it was like communities of people were gone.” For Washington coping with the pain of the loss of so many friends steered him to relocate to Florida just to get away from all of the death. “Two best friends gone to HIV and AIDS in Ohio, the gentleman that taught me how to cook. I mean, I remember, full of life, just full of so much life and such a positive role model, dead and gone. The shock of that, the shock that you feel when all of your friends are dying is something that, at this point in time I'm sort of removed from it, but I can still tap in and feel how I felt like I needed to leave Ohio because they were all dying.”
After his HIV diagnosis Washington eventually went to see an infectious disease doctor. The stigma Washington felt was real. “I was so embarrassed to be in the office, but I went anyway, and he did my blood work,” said Washington. At this point in the epidemic people were living for maybe one to two years with the virus before dying. “I had thought when people find out they're HIV positive, they're dead immediately. I'm going to die. So, I asked him. I think that this has been a thing that has kept me going. I said, well, what is my prognosis? What can I expect?” (At this point it’s important to note that this stoic, quiet, low key man, who has spent years committed to HIV support and activism and makes the best pot of coffee in the office got choked up. Could you imagine being surrounded by death and uncertainty, being diagnosed with a deadly virus, and expecting a death sentence?) “He looked to me and said, Mr. Washington, go live your life. And I did. I was in denial for many years after that, but I knew that I didn't want to die. I didn't want to become a statistic of HIV. That was not for me.”
Fisher also remembers the way AIDS dominated much of his life. “We had friends. We had fun. But really there wasn't a week that went by that we weren't aware of some charity event or we weren't following it (AIDS) in the news. It dominated, completely dominated gay life in the eighties. We didn't know when it was coming,” said Fisher. It was common at the beginning of a diagnosis of AIDS for people to live life as they had before being diagnosed. “But then they'd have an opportunistic infection and then they drop a level and maybe they go out less and then they have an opportunistic infection and drop another level and they'd reach a level where they were very thin, or they'd have Kaposi sarcoma lesions.”
The risk of being disowned or fear of telling family of their diagnosis was a reality for many. Fisher told me a story about a pact his partner David and David’s best friend Bill had made to take care of each other if one of them was diagnosed with AIDS. “Bill moved in with David and I, and we took care of him for 13 months before he passed,” said Fisher. “A lot of people, the family and friends of Bill were so saddened by his shocking physical decline that they drifted away, and they really weren't around in the final five or six months.” This included one of Bill’s best friend who disappeared for the final six to eight months of Bill’s life. She would go on to speak at his eulogy, eloquent and heart wrenching as Fisher described it. “Then I get this drunken tearful phone call three months after he died from his best friend. I actually had just entered grad school to become a therapist at that point. It was right at the very beginning, but it was this really great lesson that there are these times in life where it's really hard to face something, but if you don't do it, you're not going to get a second chance,” said Fisher.
Alterman had a friend who got sick and with the lack of partner rights during this time, once his friend passed away, he witnessed firsthand the mistreatment of his live-in boyfriend. Alterman said, “he had taken over the family business and he had a live-in boyfriend. Of course, when he passed away, because he had the business, it was all these things with the sister and the parents with the business and the houses bought. He was really successful. They kicked his boyfriend out in the streets.”
When Buchalters’ spouse had to enter the hospital with complications from AIDS he witnessed firsthand the mistreatment. After checking into a downtown hospital Buchalter was simply not allowed to see his spouse. His partner. The person he loved. “It was a terrible hospital. They didn't like me. They didn't even talk to me. I was his spouse, but that wasn't legal, certainly not in those days. It was a terrible experience. He died in about five and a half days,” said Buchalter. He was not able to see him until his spouse’s parents arrived. Upon their arrival they not only learned their son was dying of AIDS, but that he was gay and Buchalter was not his roommate, but his partner. Buchalter was out of the closet and living proudly as a gay man, but his partner was a doctor and do to the stigmas of being gay was not able to come out.
The challenges were not for nothing. This generation made it out. They made change. And they did it from the ground up. They survived and to restate Washington they lived their lives.
Things we take for granted. Like human rights as a gay man, were fought for long and hard over a long time period. They are still being fought for, but thanks to the hard work and commitment, passion and necessity, the tragedy of the AIDS epidemic has given the fight a super strong foundation and some lifelong allies in the fight against HIV.
Making it Happen. Making a difference.
“There wasn't an AIDS Action Committee till we frigging created them because we were desperate,” said Fisher. This statement explains the support that the gay community had to build and form to get the help they needed. With the risk of poor medical care, confronting stigmas and fighting to survive people of all LGBT backgrounds came together. Other prominent groups like ACT UP and the Gay Men’s Health Crisis along with activists like Larry Kramer and Phil Wilson began to speak up and demand action in the fight for medical treatment, affordable care, and fairness in treatment. Fisher recalls, “That TV show ‘It’s a Sin,’ one of the things that they are portraying really well is we were just too busy trying to play catch up to survive. We had to build healthcare organizations like CAN.” This new wave of activism supported in the formation and growth of many healthcare services directed to the LGBT community. Fisher said about CAN, “Back then, it was the basement of a brownstone. When I went then it went to a modest little building. Today in Boston, it's part of a 12-story building.”
Buchalter immediately feel into activism joining the Gay Men’s Health Crisis, counseling, supporting, and directing people in need and protesting to support better research and fair treatment. He eventually left GMHC and joined ACTUP. This organization would not stand for inaction and would become known as one of the most influential patient advocacy groups in history. “They called themselves AIDS Coalition to Unleash Power — or ACT UP. And they ultimately forced the government and the scientific community to fundamentally change the way medical research is conducted — paving the way for the discovery of a treatment that today keeps alive an estimated half-million HIV-positive Americans and millions more worldwide.” (NPR, How to Demand a Medical Breakthrough: Lessons from the AIDS Fight, February 9, 2019)
Buchalter explained, ACTUP was protesting through die-ins and demonstrations. “Bush wouldn’t help anybody. We thought we had a friend in his his wife, but not for sure,” he said. “We had to do something. It was really bad.” Buchalter even became a marshal during the demonstrations to protect his fellow activists. “I would stay between them and the police. I would help defense,” he said. He fought for the government to do something and keep them from “just closing their eyes.”
Basketball player Magic Johnson, MTV’s Real-World star Pedroza Zamora, Greg Louganis, Freddy Mercury all brought AIDS/HIV to mainstream, education and showing people of all backgrounds about the virus that had so affected the gay community. In a way, over time AIDS had hit mainstream status, but as with everything there was still work to be done to support the community; to educate, fight stigmas and support prevention of the spread of HIV.
Once Washington moved to Florida, he found himself working with HIV related groups in the area including the South Florida AIDS Network. He started his journey with Broward House after volunteering with a local church group that was making a Thanksgiving meal for clients of the nonprofit. During the planning of the dinner Washington collaborated with the housing director at the time. “She kept saying how she needed an assistant. She kept repeating it. I'm sitting there; I had just quit my job like five months ago. I said, well, I'm looking for a job, after she said it about three or four times,” remembers Washington.
After an interview Washington was hired for his first role, not as the assistant, but working under a grant through the Congressional Black Caucus supporting people who had fallen out of care and getting them back to health. Washington said, “We would track people, get them back into care, go to their appointments with them, we held their hand. It was a process to make sure that they were doing the right things.” Washington has had a full life at Broward House and says his current job as a Prevention Specialist is his favorite because, “We get a chance to talk to directly to clients and help them with making that change. Which is so important. If for no other reason than saying, you need to get tests a little bit more often than you're getting it. He likes being able to help people and says, “I don't want you to walk around with something that we could have found out sooner. That part is what I like to do what I do now.”
Fisher has come a long way since his time working in AIDS activism. In fact, he took a 25-year break from the world of HIV/AIDS. After a move from Massachusetts to Florida not only for the warm weather, but to be live in Wilton Manors a neighborhood known for its LGBT population. He wanted to be with his people and has now found himself again supporting the community. “It's been interesting coming into Broward house and working with people who are HIV positive. It brings up stuff for me and it brings up my personal history. I reflect on how I kind of left AIDS activism and then now I'm swinging back around to it,” says Fisher. “I'm just stunned at all the trauma that I see and it it's from trying to survive in a world that says that you don't exist. You shouldn't exist. You're filthy, you are undermining Western civilization.”
Similarly, Alterman has found his path now lies in HIV support and prevention. Not long after closing his dental practice and moving to Florida it was suggested to Alterman by a friend to take the LIFE Program offered by Pride Center, a 16-week course; lifestyle for learning immune function enhancement. This involved a lot of discussion groups and offered Alterman a way to meet new people. “It had been six months or within the first year of being down here and then they asked me to be a facilitator for the next cycle of the program,” said Alterman. He said yes and continued to lead these discussions. He found himself at Broward House after COVID when the LIFE program was paused. Forever grateful to the Pride Center, Alterman missed getting out into the community and was again given this opportunity at Broward House to support and educate.
And Duncan who struggled with addiction when he was first diagnosed may not have supported the cause directly, certainly from the side-lines, but that has changed. “Today that's who I am. I'm out in the fight for HIV and to end HIV and to educate on HIV.” Duncan is passionate about being an ally and a support and believes if he had not been working through an addiction, he would have been at the frontlines from day one. Once he made the decision to get sober, he was pointed in the direction of Broward House where he remembers being surrounded by love, he had found where he was supposed to be. “I never knew this place existed and it's amazing. Being there, the stones that are there from people that were there, the stories that I have gotten from people that are still working with Broward House that were actually there when it opened as a hospice,’ Duncan remembers. “That was the last place they had where families had shunned them or whatever, they came there to die in dignity, in peace.”