AIDS at 40
What We’ve Lost, What We’ve Gained
by Hank Trout
On June 5, 1981, the Mortality and Morbidity Weekly Report (MMWR) informed us that between October 1980 and May 1981, five young men, all active homosexuals, were diagnosed with and treated for Pneumocystis carinii pneumonia (PCP) at three different hospitals in Los Angeles, California. Two of the young men died. Since PCP in the United States occurs almost exclusively among severely immunosuppressed patients, its occurrence in young, previously healthy gay men was usual. And alarming.
On July 3, 1981, The New York Times reported, “Doctors in New York and California have diagnosed among homosexual men 41 cases of a rare and often rapidly fatal form of cancer”—Kaposi’s sarcoma (KS). As with the MMWR report of PCP, all of the KS patients were active homosexual men. The alarm bells clanged more loudly.
No one could discern why these cancers and opportunistic infections were occurring—and spreading. Because the disease in the U.S. was first detected in gay men, the disease initially was given names that included the word “gay”—“gay cancer,” “Gay-Related Immunodeficiency Disease (GRID).” But by mid-1982, scientists realized the disease was also spreading among other populations, including transgender women, hemophiliacs, intravenous drug users, and straight women. By September of that year, the disease was finally named: AIDS, the slightly less stigmatic “Acquired Immunodeficiency Syndrome.”
The news reports got even more frightening by the day. Largely due to government inaction, scientific misinformation, bigotry and the stigma attached to HIV/AIDS, the virus continued to impact communities exponentially across the entire planet, a global pandemic that would kill millions of people and deeply affect tens of millions more. We have contended with HIV/AIDS for forty years and have indeed achieved small victories (like HAART and PrEP), reducing the number of HIV transmissions and AIDS-related deaths over the years. However, we still have neither a vaccine nor a cure for HIV/AIDS. The pandemic continues to wreck lives around the planet.
To get a sense of what we’ve lost as a community, as well as how we’ve changed during this forty-year pandemic, A&U approached a handful of HIV/AIDS activists with questions about when they first heard about HIV/AIDS, when they first realized the pandemic would touch them personally, and the moments—good or bad, painful or inspiring—that stand out in their memories from the last forty years. We corresponded with Mark S. King, writer/blogger, My Fabulous Disease; Butch McKay, Director, Positive Living Programs/OASIS Florida; Charles Sanchez, writer/actor, Merce; Charles King, CEO, Housing Works, New York City; Claire Gasamagera, activist, born with HIV; Jay Blotcher, writer/activist, ACT UP; Victoria Noe, author, Fag Hags, Divas, and Moms; Reverend Yolanda, performer and transgender rights/HIV activist; Steven F. Dansky, writer/filmmaker/historian, Gay Liberation Front; and Davina Conner, Prevention Access Campaign (U=U).
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As Steven F. Dansky has pointed out, “1981 demarcates a traumatic imprint in our active universe.” Few of us read the June 5, 1981 MMWR or its report of five cases of PCP among healthy young gay men. Thus, we first learned about the “gay cancer” in the July 3, 1981 article, “Rare Cancer Seen in 41 Homosexuals.”
“I was helping a friend from college paint his Beacon Hill apartment in the summer of 1981,” said Jay Blotcher. “Among the newspapers scattered across his apartment floor was this page from the Times. I remember reading the paint-spattered article in a disconnected way. I was going into my senior year at Syracuse University and, while I self-identified as a gay man, New York City seemed light years away. I had the classic reaction of denial that this news pertained to me.” Denial, as well as anger, also tainted Mark S. King’s first response to the Times article. “The implications seemed too awful to be true. I felt denial, selfishly hoping that whatever it was, it was only happening to ‘other people,’ and I also felt annoyed that something would dare disrupt the new-found gay sexual liberation that my community was enjoying during that time. I was suspicious of anything that might curb that.”
That kind of denial, thinking that this disease was happening only to “other people” also
colored Charles King’s response. “I remember reading the first report I saw of this mysterious gay cancer with interest, but little personal concern,” he wrote. “I was in the closet and celibate, both commitments I had made when I became a minister. I had no idea at the time how much the AIDS pandemic would consume my life and shape my world.”
Some of our respondents didn’t internalize the news right away. Davina Conner, for instance, wrote that “I had to be about ten or eleven years old, and I didn’t understand at that time what was going on. I only remember listening to it a lot on the TV.” She began to put things together in 1991 when she learned of Magic Johnson’s diagnosis, and again in 1995 with the AIDS-related death of rapper Eazy-E. Claire Gasamagera, a native Rwandan born with HIV, did not know her serostatus nor anything about HIV/AIDS for many years. Rev. Yolanda remembers, “I first heard about AIDS in graduate school in Memphis, Tennessee. I was finishing my MA and was planning on moving to NYC in three months. That was 1983. I was scared… but I did move to NYC in the Fall of 1983.” Victoria Noe, who would go on to write so eloquently about the women warriors in the fight against AIDS, said, “I don’t remember hearing about it right away. But by late 1982, I knew enough to realize that it couldn’t only affect gay men. Calling it ‘gay cancer’ never made a lot of sense to me.”
One of my closest friends had a difficult labor and delivery. Her doctor wanted her to have a transfusion. She worked in the lab at that hospital [in St. Louis] and knew the blood supply wasn’t safe. She did wind up getting two transfusions. That was when it hit home for me.—Victoria Noe
The “gay cancer” appellation caught the attention of Butch McKay also. “Upon seeing the headline at first glance I thought, YES! Proof that gay is not a choice, but genetic since there was a disease that affected only gay men. But reading the articles that followed, I came to realize, ‘gay cancer was a weapon to demonize gay sex. My anger instantly began to outweigh my feelings of rejection. I needed to act.”
No matter how long some of us wrongly assumed that HIV/AIDS was something that happened only to “other people,” eventually each of us came to know that the pandemic would touch our lives, would personally touch us, in devastating, heartbreaking ways. For many of us, that realization came with the first diagnosis or death of someone close to us. For Victoria Noe, that realization came in 1983. “One of my closest friends had a difficult labor and delivery. Her doctor wanted her to have a transfusion. She worked in the lab at that hospital [in St. Louis] and knew the blood supply wasn’t safe. She did wind up getting two transfusions. That was when it hit home for me.”
Butch McKay had a similar realization. “My best friend Tivvis was diagnosed in 1987 with
AIDS. I knew then that it was not limited to large metropolitan cities. It had hit home and I was scared. I knew that day I was losing the love of my life soon and maybe my own life at a later date. I felt it was only a matter of time before I became infected…. I felt pain, deep hurt, and fear. I was lost.” It was the loss of friends that awakened Rev. Yolanda to her susceptibility to acquiring the virus. “When several friends of mine died, I realized that I was definitely at risk. But I was in denial and didn’t want to think about it. I left New York City in 1993 because the situation in the city was overwhelming to me. After I moved to Vermont, I was diagnosed with HIV, and began the process of specific healthcare and HIV meds.”
“The first person I knew who was struck down by AIDS was John Bemus, my boss at the St. Marks Baths,” wrote Jay Blotcher. “He was gone within weeks of being infected. Since this was late 1983, people chalked up his mystery death to hepatitis. It would be several years until another friend was infected.” For Mark S. King, it was a slow-moving realization. “I was frozen in disbelief for a year or so, until AIDS blew my world apart in West Hollywood. Suddenly, it wasn’t something twice-removed, it was my best friend and my roommate and my brother-in-law, all of them dying. Once I tested positive myself in 1985, deaths were common. I snapped out of my paralysis and went to work for the first AIDS agency in Los Angeles. I figured it would be the last job I would ever have.”
For Davina Conner, her realization came “the day I found out that I was diagnosed with HIV in 1997. Not only did it impact my life drastically, it changed my life at the beginning, and I can never forget my reaction. When I think about it, it hits me at the pit of my stomach and cringes me with the fear that I had of death. The stigma that I felt about myself internally was terrible.” His diagnosis with HIV was also the turning point for Charles Sanchez. “My very first professional acting job in New York City in 1988 was in an AIDS education show for kids. I was very naïve. Maybe it was my age or just my luck, but I didn’t have friends dying of AIDS around me. It wasn’t until probably 1992 when a friend first disclosed to me that he had HIV. Even after that, I still felt like HIV and AIDS was ‘over there,’ somehow. It happened to other people. Until 2003, when I was diagnosed with AIDS, and it hit me like a brick in the head.”
For many of us, once we realized that the pandemic would indeed touch us personally, our
anger outweighed our fears and led us to activism. As Steven F. Dansky put it, “Rage at an indifferent and callous heteronormative society was channeled into a daring political movement—a model for grassroots organizing.” Jay Blotcher: “I felt I had to do something, so I began raising money in 1985 for GMHC’s AIDS Walk New York. In my desperate mind, I thought that if I could help others, I would be spared. [I joined] ACT UP New York in the fall of 1987. Being a member of ACT UP made me a better, brighter, more compassionate, more defiant person.” Butch McKay: “The last time I held Tivvis in my arms, he asked me to promise to get involved, and almost thirty-five years later I’m still involved. I honor Tivvis with everything I contribute to the fight.” Charles King: “I came out as a gay man to my mentor, Reverend Cofield, tendered my resignation, and began my journey to do something about HIV and AIDS.”
Within wakeful consciousness and in the dominion of dreamscapes, what we’ve experienced over the four decades since the beginning of the AIDS pandemic are flashbacks of suffering and loss through illness and death; disappearance and displacement; surviving perpetual heartache whether in silence or in public.—Steven F. Dansky
Over the course of this forty-year pandemic, we’ve experienced great losses as our friends and family members succumbed to AIDS; we’ve dealt with unfathomable grief, we’ve struggled through years of confusion and chaos and false cures, and we’ve dealt with death as a constant in our daily lives for four decades. Steven F. Dansky asserts, “Within wakeful consciousness and in the dominion of dreamscapes, what we’ve experienced over the four decades since the beginning of the AIDS pandemic are flashbacks of suffering and loss through illness and death; disappearance and displacement; surviving perpetual heartache whether in silence or in public.”
Some of the seemingly random moments we’ve lived through over the last forty years are indelibly carved into our memories. Charles Sanchez vividly remembers hearing a radio report that Magic Johnson had just tested positive for HIV, and how awkward (then relieved) he felt getting his first kiss after his diagnosis. Claire Gasamagera remembers the courage of the activists who promulgated The Denver Principles in 1983, and Larry Kramer’s empowering slogan “Turn your grief into rage.” Some of us even found romance through our activism. Charles King recalls that “I met Keith Cylar at ACT UP New York in the summer of 1989. It started with a public debate and ended up with him seducing me. We were together for fifteen years before he died and helped to found and lead Housing Works during that time and fought and won many battles.”
Along with the major, life-shaping changes that we’ve undergone, we’ve also been shaped in smaller ways by the pandemic. Victoria Noe: “What has stayed with me most—even more than the suffering, injustices, and deaths—is one way it affects me to this day. For a long time, if someone disappeared, if I lost contact with someone (I’m talking about gay men in particular), I assumed they were dying or dead. It made me paranoid about losing touch with my friends. I even made some of them promise they would tell me if they were seriously ill. I didn’t realize why I felt that way until I started writing about AIDS and grief. When I looked at my behavior in the context of those times, it made sense.”
We faced eternal questions at such a young age. Why are we here? What is life and death? Is there a God, and does it love us? I sat with friends who were dying in my guest room, posing those questions and not getting answers. The stories of what happened to us deserve to be remembered and repeated.—Mark S. King
The majority of what we remember, is unspeakably painful. “My closest friends died when I was in my mid-twenties,” said Mark S. King. “That changes a person. We faced eternal questions at such a young age. Why are we here? What is life and death? Is there a God, and does it love us? I sat with friends who were dying in my guest room, posing those questions and not getting answers. The stories of what happened to us deserve to be remembered and repeated.” Butch McKay shared a similar sentiment. “My heart has been broken so many times it is beyond repair,” he said. “I use the scars to forge on for those unable to do so, sharing their stories, assisting those that followed them, fighting stigma, and working to change the political will of the country. I have been blessed with a community that defines unconditional love and practices it with every step they take and every breath they breathe. I breathe for those who no longer can, and march for those who led the way. with unimaginable strength, courage, compassion, and love. They are my heroes, and I will continue their journey.”
As it did for Mark S. King, and thousands of others, the pain of loss drove Rev. Yolanda into activism as well. “I remember thinking that I didn’t have very long to live. I decided that I would live my life fully out loud and proud for as many years as I have left. That is when I decided to come out as trans femme and live my life as Yolanda. I also became very involved in the HIV/AIDS community and created a fundraising event for People with AIDS in Vermont called ‘Winter Is A Drag Ball.’ I moved back to NYC in 2001 and have been active in the HIV/AIDS community here with performances and fundraising efforts ever since.”
Sometimes, great pain and grief can arouse great strength, resilience, and even a sense of purpose. Rev. Yolanda asserts that “being HIV-positive has had a positive effect on my life. I have learned the importance of self-care and have had the opportunity to help others with their own self-care.” And finally, Mark S. King again: “Please know this: I am not defined by this great tragedy. My life is lovely and fulfilled today. I am happy to tell the story, but I won’t judge younger people who have other things on their mind. Every generation has their stuff, their great challenge. Tragedy isn’t a contest. If I can’t use my experience as a tool to have more empathy for other people, then what the hell was it all for?”
What indeed? Well, for one thing, the AIDS pandemic turned all of us into individual repositories of sorrowful memories of great pain, loss, death, and grief. The pandemic taught us how to tap into unknown reserves of bravery and resilience, what Steven F. Dansky called “our reemergence from a state of disbelief and despair.” And it turned many of us into storytellers, truth-tellers among all the lies and misinformation, the preservationists of our own history. Steven F. Dansky again: “I believe it’s essential that we place preservation at the center of our collective life, including oral histories, photographs and video, and writing. We must support those organizations that perform this mission. Historical preservation is fundamental because memory can be fragile, subjective, unstable, and contingent on the different credibilities. Memory can be diminished from biomedical factors. Or from heterosexism that compels us to forget, trivialize, mask, negate reality, or view our experience as insignificant. So many of us were lost during the height of the AIDS pandemic—those narratives must be told, recorded, and archived.”
As the AIDS pandemic turns forty, those of us who bore the brunt of it from the beginning have become “Elders of the Tribe,” activists, advocates, chroniclers of lives lost and hopes dashed. We gratefully accept our responsibility to share, record, and preserve those stories of living through hell for forty years.
Thanks to Bill Bytsura for granting us permission to run the photos of Jay Blotcher and Charles King, both of which are part of the photographer’s The AIDS Activist Project. For more information, visit: https://www.billbytsura.com/products/the-aids-activist-project.
Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-one-year resident of San Francisco, where he lives with his husband Rick.