By Daphne Fauber
“Usually we hear about two generations—the first coming of age in the era of gay liberation, and then watching entire circles of friends die of a mysterious illness as the government did nothing to intervene. And now we hear about younger people growing up in an era offering effective treatment and prevention, and unable to comprehend the magnitude of the loss.”
—Between Certain Death and Possible Future: An Introduction, Mattilda Bernstein Sycamore
Between Certain Death and a Possible Future: Queer Writing on Growing Up with the AIDS Crisis is an anthology of 36 essays edited by Mattilda Bernstein Sycamore and published by Arsenal Pulp Press. The book’s purpose is to catalog the lived experiences of diverse queer voices who came of age surrounded by AIDS/HIV. Despite a focus on the idea of two generations, many of the contributors varied in age, background, and identity indicating where the divide lies between the generations is not as straightforward as it may seem. In fact, the crux of many of the anecdotes was that the AIDS crisis never ended for some populations.
I was particularly moved by the essay, From the Inside: One Prisoner’s Perspective by Timothy Jones. This piece recounted the experience of an incarcerated man serving a life sentence and living through the AIDS crisis from the 1990s through today. It was a grisly look into prison culture and how it has and continues to perpetuate violence against those most at risk. Homeless Youth Are Still Dying of AIDS by Sassafras Lowrey also directly posited that the AIDS crisis never ended for queer homeless youth. In their personal experience, as both a homeless youth and a program director for services for queer homeless youth, HIV/AIDS is widespread and killing young people who don’t have the resources to pay for life-saving medication or basic necessities. They also described homeless youth attempting to become HIV positive in order to become a higher priority for scarce resources (i.e., personal apartments, counselors, etc.).
While many of the essays consider how the legacy of the HIV/AIDS epidemic lives on today (and in some ways never ended), an equal number of essays are reflective memoirs of events decades past. I connected to To Make a Whore Of by Emily Stern, an essay about Emily’s experiences as a bisexual woman growing up in Indiana in the 90s and watching her mom die of AIDS. As a fellow bisexual Hoosier and a teacher, I saw both myself and my students in her anecdote. Like many of the essays within the collection,To Make a Whore Of is a heartwrenching capture of growing up and being failed by system after system.
This collection demanded I consider my relationship with the older generation of queers I would never get to meet and the ones who are still telling their stories. Not only that, but the contributors begged me to evaluate how the queer spaces I exist in today were molded by death, life, hope, and despair, in order to fully understand my community. These are ideas I had not previously been given the tools to comprehend due to my own limited experiences with HIV/AIDS.
I was born two years after antiretroviral therapy became the standard treatment for patients with HIV/AIDS. My earliest memories of HIV/AIDS are edgy jokes on South Park and on school buses. To me, HIV/AIDS was something that only existed in museums (and therefore was okay to joke about), occupying the same space in my brain as polio and cholera. My first official introduction to the disease was attending the Indianapolis Children’s Museum in elementary school. Within The Power of Children: Making A Difference exhibit, I walked through a replica of Ryan White’s bedroom. A fellow Hoosier child, he had contracted HIV from a blood transfusion, eventually developing AIDS. All I really knew at the time, incorrectly, was that a long time ago a child like me was bullied and died because of a mysterious disease hidden in his blood. I took solace, incorrectly, in the fact that what happened to Ryan didn’t happen anymore.
In high school, I was a victim of Indiana’s abstinence-only sex education and my own school’s propensity for hiring uninterested football coaches to teach health. I was told at some point that any STI could become AIDS eventually, meaning the only way to avoid serious disease (or worse, pregnancy) was to avoid sex. However, HIV/AIDS wasn’t explained as a death sentence, just something you’d have to live with like diabetes or arthritis. That was the extent of my formal HIV/AIDS education. Again in high school, I watched an episode of Ru Paul’s Drag Race in which one of the contestants, with tears streaming down their face, revealed that they were HIV positive, and my first thought was confusion that it was such a big deal.
Even in college, my knowledge of HIV/AIDS was severely lacking, despite my believing otherwise. I volunteered at local Pride events, attended drag shows, and watched the local production of Angels in America, all with only a cursory understanding of the deeply rooted trauma and bodies these events were built from. In fact, I found Angels in America to be shocking for the sake of being so, often to the detriment of the plot and viewer experience. On further reflection, maybe that was the point. I read physician-anthropologist Paul Farmer’s Infections and Inequalities, a medical anthropology book from the 90s on the HIV/AIDS pandemic and its impact on global poor communities. While a wonderful book, it barely touched on how queer communities in the United States were impacted, furthering my view that HIV/AIDS was something that other people in far-off places and far-off times dealt with.
In summary, as a Gen Z bisexual woman in a long-term monogamous relationship, I never once considered the role HIV/AIDS has in my life until I read Between Death and A Possible Future. I had never been asked to. I fully fit the stereotype put forth of a second-generation queer kid with no concept of the horrors those of the first generation, only marginally older than me, had to endure. I recognize fully this privilege. I grew up middle class in a college town, with parents that were happy to supply me with birth control and regular doctors’ visits. I’ve never been homeless, done sex work, been to prison, injected drugs, or had any short-term sexual partners—which I mention only as characteristics of heightened potential risk to HIV/AIDS, not as moral determinations. To me, HIV/AIDS was simply never a part of the reality I lived in, as my life was sheltered.
I recount my own experiences with HIV/AIDS as a conversation with the essays in Between Certain Death and a Possible Future to provide one of many perspectives of a young queer woman still learning. I provide these thoughts to encourage other young queer people to read this collection, to learn through firsthand accounts in what ways the AIDS crisis never ended and to mourn alongside the contributors those we will never get to meet. I encourage those with lived experiences similar to those within the collection to practice self-care but not be afraid to tell your story and the stories of those who no longer can. While chilling and visceral, Between Certain Death and a Possible Future is a must-read for those curious about where they belong in a “Post-HIV/AIDS” world that hasn’t left history as far behind as it likes to pretend.
Daphne Fauber (she/her) is a queer artist, writer, microbiologist, and teacher based out of Indiana, U.S.. She also writes reviews of anything horror-related for HauntedMTL, an independent horror website that raises money for LGBTQ+ charities.