Guest Post: No, We Didn’t “Lose an Entire Generation” to AIDS
Molly Pearson is a Missouri-based HIV advocate, social work professor, organizer, facilitator, and MO Ho Justice OG! We are privileged to re-publish this piece, originally written for World AIDS Day 2021 and published in TheBody as part of their HIV Redefined series. You can read more of Molly’s writing at www.mollympearson.com/writing
It’s common among my fellow millennials to joke about becoming a #QueerElder between the ages of 30 and 35. Most of us understandably experience some amount of existential ennui at the prospect of aging, and many of us have had limited, if any, contact with older LGBTQ people. Feeling like an older queer person at age 30 or so makes sense enough given the relative absence of real-world possibility models. However, I can’t help but feel a little cringy at declarations of elderhood before the age of 40. I was raised in a queer household and have been lucky to be surrounded by LGBTQ people much older than me my whole life. I wince at the millennial-queer-elder trend but find it mostly harmless.
What does trouble me, though, is the willful erasure of our actual queer elders. Later adulthood is typically defined as beginning at age 65, far beyond where any millennial would be within their life course now. Ageism is pervasive in mainstream U.S. culture, but a unique form of aging denial occurs in the queer community. The claim that we “lost an entire generation” to AIDS erases LGBTQ older adults who are very much alive, and it erases long-term HIV survivors, regardless of sexual orientation.
It’s estimated that there are just under 3 million LGBTQ people over 50 in the U.S., and about half of all 1.2 million people living with HIV are age 50 and older. Queer elders and older adults living with HIV are still here, yet many younger people feel compelled to say, without a second thought, that we “lost a generation” and that we have “no queer elders.” Something isn’t adding up. Why aren’t we seeing or hearing our predecessors? What if we supported queer elders and long-term HIV survivors with the same fervor we give to memorialization?
Long-Term Survivors Are More Than Their Trauma
When attention is given to long-term survivors, it’s typically through a trauma lens, and indeed, most if not all have experienced deep trauma. Activist, writer, and speaker Tez Anderson has been instrumental in growing awareness of what he coined as AIDS Survivor Syndrome, which includes symptoms of PTSD unique to long-term survivors. As Anderson describes in a previous article featured in TheBody, “Many of us went down a rabbit hole, experiencing years of anger, anxiety, and poor sleep with nightmares.” AIDS Survivor Syndrome is receiving scientific and medical attention to quantify and measure the effects of surviving HIV/AIDS before viable treatment options became available.
Trauma must be tended to. Long-term survivors must receive the care they need in order to live the full and pleasurable lives they deserve—but this is not something that a purely biomedical focus can provide. While we need to understand the mental health impacts of AIDS Survivor Syndrome through a scientific approach, it’s also imperative to turn our attention to the joy and community care that many long-term HIV survivors have already often known and co-created.
Joan Ferguson is a St. Louis–based AIDS activist and educator. Her work has taken her across the United States, the Caribbean, and multiple countries in Africa. In an interview over the phone with me, she recounted that in the late ’80s and early ’90s, when she and her colleagues would do outreach at the gay clubs in St. Louis, some of the clubs would post a chalkboard to list the names of those who had died since the previous weekend.
Yet in the face of such devastation, Ferguson reflected that joy and splendor were cultivated as tools for survival. “Despite all the pain and suffering Sunday through Thursday, on Friday you could go out and dance the pain away. And the balls—the magnificent, beautiful gowns, just flawless, living their biggest and best lives as who they were, who they wanted to be, who they imagined themselves to be,” she said, describing the spectacle of clothing and exuberance in the local Ballroom scene.
“Despite all the pain and suffering Sunday through Thursday, on Friday you could go out and dance the pain away. And the balls—the magnificent, beautiful gowns, just flawless, living their biggest and best lives as who they were, who they wanted to be, who they imagined themselves to be.”
Some semblance of what Ferguson describes can be found in media, in shows like Pose or films like Paris Is Burning. Media representations of this time fill viewers with awe, yet long-term HIV survivors themselves don’t always receive the same attention, and the result can be deep isolation. Ferguson explains, “So often [long-term survivors] will just fade away for a myriad of reasons. Not feeling that they matter. Feeling as if their life experiences aren’t important. Feeling that their wisdom is no longer needed.” What Ferguson describes—current feelings of rejection from culture and society—is compounded by the more obvious causes of AIDS Survivor Syndrome, such as loss of friends, lovers, partners, and family members in the face of government inaction. In other words, long-term survivors weren’t only traumatized from what happened to them in the past; the community pulling away in the present is also a cause of harm. Ferguson describes how the cycle of ageism within the LGBTQ community results in isolation: “[Younger community members] may say, ‘Well, I don’t want to listen to you because you’re my grandmother’s age.’ ... So [long-term survivors] may feel what they have to say isn’t valued because these young folks don’t want to hear it.”
Even if younger queer community members are aware that many of their predecessors are still here, it doesn’t mean they show up. Ferguson explains how even passive disengagement with queer older adults and long-term HIV survivors harms our elders, but it harms younger people too. “That wisdom is lost. A lot of [long-term survivors] may become mute because they feel that no one wants to hear the stories. But that’s history. That’s experience. That’s culture. And these elders are cultural keepers. Their stories and their narratives should be heard because once it’s gone, it’s gone,” she says. To uplift such stories, in 2017, Ferguson began organizing annual events on National HIV Long-Term Survivors Day in June and National HIV and Aging Day in September. As we collectively re-emerge from COVID isolation, she hopes to reinstate the celebrations.
“A lot of [long-term survivors] may become mute because they feel that no one wants to hear the stories. But that’s history. That’s experience. That’s culture. And these elders are cultural keepers. Their stories and their narratives should be heard because once it’s gone, it’s gone.”
Celebrating Long-Term Survivors and Their Stories
A spirit of celebration through stories is precisely what The Generations Project is all about. Formed in 2015, the project cultivates intergenerational community and preserves LGBTQ history through oral story sharing. The project has partnered with The Eagle NYC, LGBTQ aging organization SAGE, and other partners to bring LGBTQ people from all stages of the life course into a shared community. In June and October of this year, they explicitly centered the intersection of queer identity and HIV through a partnership with the New York City AIDS Memorial to produce REVIVAL: Survivors’ Stories.
Over a Zoom conversation, Program Director Kan Seidel described the vast diversity of the stories told, from those of bisexual Black women to lesbian caretakers of gay men, to mothers and children who shared positive HIV diagnoses. Seidel says, “There’s an endless number of ways these things can be experienced, and we need to keep finding people and letting them be heard.”
The Generations Project is just one of many efforts to amplify the stories and experiences of long-term HIV survivors. Other notable, contemporary projects and platforms include I’m Still Surviving, a long-term-survivor women’s oral history project previously featured in TheBody, and The Body as an Archive, an oral history project led by Visual AIDS, which is currently collecting interviews with long-term survivors and elders through June 2022.
“There’s an endless number of ways these things can be experienced, and we need to keep finding people and letting them be heard.”
Long-Term Survivors and Queer Elders Are Diverse
The great diversity among both LGBTQ elders and long-term HIV survivors highlights another problem with the myth that we “lost an entire generation to AIDS.” Who is really included within “an entire generation”? For decades, HIV/AIDS has been deemed a “gay disease” by mainstream media and culture, even though anal sex is just one way HIV can be transmitted. Shows like Pose at least offer a flicker of cultural recognition that transgender women are impacted by HIV. When it comes to our cultural imagery and inclusion of queer elders, are lesbians in the picture?
Tazia Hampton is a 52-year-old Black cisgender lesbian and was diagnosed with HIV in 1989 when she was 20 years old. In an interview over Zoom, she reflected on the problems that occur when we assume that HIV is not only a gay man’s disease but a white gay man’s disease. She describes what it was like to receive her diagnosis: “I was in a room with this older white guy. I had never met him before, but I started having these thoughts, wondering what he was thinking of me.” It took her a year to enter case management; she wonders if she might have sought care sooner had a Black person, a woman, or ideally, a Black woman, provided her diagnosis. Despite her painful diagnosis experience, she celebrates the peer support available to people newly diagnosed today.
Hampton has been instrumental in the improvements to HIV care over the years in her home of St. Louis. She serves as the co-chair of the St. Louis Regional Planning Council, is involved in St. Louis’s participation in the global Fast Track Cities initiative to end new HIV deaths and transmissions, serves on the Prevention and Care committee for the city, and sits on a variety of community advisory boards. She notes that the majority of this work is centered on men who have sex with men (MSM).
Hampton says that it’s understandable that lesbians, especially lesbian long-term HIV survivors, aren’t as visible in HIV conversations and advocacy. She says, “[MSM] were in the images everywhere. Mid-to-late ’80s, early ’90s, everywhere. And a lot of the AIDS organizations were started by them.” To emphasize how community-driven the local gay and MSM community was, she says, “They were not getting any help with this,” emphasizing the utter lack of adequate systemic or governmental support.
Yet Hampton does note how confounded people can be at the thought of a lesbian contracting HIV, even though it’s been long-established that HIV can be transmitted in a variety of ways. “It’s crazy to think that you could be a lesbian and be positive because people are wondering how the hell you got it. It’s not that we’re not out there, it’s just that there are very few of us,” she says. Hampton herself has met only one other lesbian living with HIV that she can recall.
“It’s crazy to think that you could be a lesbian and be positive because people are wondering how the hell you got it. It’s not that we’re not out there, it’s just that there are very few of us.”
Hampton’s comments not only emphasize the isolation she experienced as a Black woman with a positive diagnosis, but the isolation that comes from the general assumption that lesbians don’t contract HIV. It can be assumed that the claim that we “lost an entire generation” of queer elders to AIDS does not include lesbians. In the mythology of complete and total death to AIDS, we manage to doubly erase lesbians from both long-term survivor communities and the collective memory of queer history and culture. Hampton speaks plainly on the matter: “That’s the bad thing about ‘We’ve lost a generation.’ You make a blanket statement without understanding the subtleties.”
“That’s the bad thing about ‘We’ve lost a generation.’ You make a blanket statement without understanding the subtleties.”
Looking Beyond the Myth of “We Lost an Entire Generation to AIDS”
Such subtleties extend beyond matters of sexual orientation, gender identity, and who is included in contemporary HIV narratives. There are also subtleties in how queer elders relate to one another. While HIV has undoubtedly been a tremendous force in the lives of LGBTQ older adults, it’s important to remember that there is far more to queer elders’ lives, and overall health, than HIV alone.
Charles Koehler is 69 years old, white, gay, and HIV negative. Indeed, he reflects on the AIDS pandemic as having felt like a “war zone” at times. For nearly a decade, he served as president of the St. Louis chapter of Prime Timers Worldwide, a social group for “mature gay and bisexual men” who prefer to gather outside of the bar scene. Since stepping down as president of the St. Louis chapter, Koehler went on to serve as secretary for the primary worldwide association. He is also a founding Advisory Committee member of the Missouri affiliate of SAGE, an organization dedicated to advocacy and services for LGBTQ older adults.
In an interview over Zoom, Koehler emphasized that another problem with the myth that we “lost an entire generation” is that it implies that AIDS is over, and it is certainly not. As president of Prime Timers St. Louis, amid a variety of social support activities, he made sure to continually organize education and engagement in partnership with local HIV/AIDS service providers throughout the ’90s.
While Prime Timers has certainly served as a source of support for HIV-impacted gay and bisexual men, it also serves as a vital source of support for those experiencing other health disparities. AIDS Survivor Syndrome—and for that matter, new HIV transmissions—aren’t the only health disparities facing LGBTQ older adults. They also face disproportionately higher rates of substance abuse, smoking, suicide, depression, and chronic physical illnesses such as diabetes, asthma, and cancer. These disparities are urgently pressing for aging LGBTQ people across sexual orientations and gender identities. Proclaiming our queer predecessors as a “lost generation to AIDS” erases the queer elders who are alive and who may be struggling with a variety of other health issues that are just as tied up in systemic oppression as HIV, but in subtler ways.
Prime Timers has intentionally engaged in cross-generational programming, particularly with Growing American Youth, a St. Louis–based social support organization for LGBTQ youth. Koehler recalls organizing to bring LGBTQ young adult authors to St. Louis and chaperoning the annual citywide queer prom with his late husband, Dennis Hostetler, who passed away to cancer in 2010.
Koehler stresses the need for younger LGBTQ people not to take what they have for granted, and a key part of that process is “to learn about their LGBT history, and also to acknowledge that it’s infinitely easier for them to learn about the LGBT past.”
“[Younger LGBT people need] to learn about their LGBT history, and also to acknowledge that it’s infinitely easier for them to learn about the LGBT past.”
Koehler pointing out today’s relative ease of access to queer history hung heavily on my mind days after we ended our conversation. Sometimes I have to actively remind myself that for a millennial, I’ve had unique and precious access to LGBTQ elders and long-term HIV survivors, thanks to being raised in a queer household directly impacted by the AIDS crisis.
Maybe it’s just my cringe-meter that goes off the charts when 30-year-olds declare themselves #QueerElders. Maybe my internal alarm is a little overly sensitive to the blanket statement that we “lost an entire generation” because many people I love—many who raised me—are living proof that this is not true.
Or maybe my ageism radar is working just fine. Maybe it’s younger LGBTQ people who need to relish and revel in the unprecedented access to books, images, films, articles, and community-building activities that create our collective queer and HIV lineages. While ageism may be pernicious, we have the tools and language to see, hear, and care for our elders if we want it.