I was in Grade 11 in 1982 when I first heard of the term “GRID” (gay-related immune deficiency), an early — and telling — label for the HIV virus and its then-lethal outcome. As someone who wasn’t out yet — except to my mother who never spoke of my gayness again for the rest of her life — I was terrified.
Not only did I have a big secret and was already being bullied daily for my suspected “fruity” ways, now, just when my teenage brain began to imagine a future away from high school and its horrors, now there was a “gay cancer,” a “gay plague”? And you got it from having sex?
Fearing death, shame and maybe even God, I considered becoming a priest. I was still a virgin, I figured. Plus, it’s a job for life. Toronto filmmaker Laurie Lynd, whose new documentary Killing Patient Zero explores the crisis, puts it aptly: “AIDS effectively re-shamed me as a gay man. It subtly, powerfully further complicated my sense of self-acceptance.”
When it comes to discussions about HIV and its impact, there are entire countries whose narratives have not been adequately told and heard — some not at all. I am a cisgender white gay male, and aware of my privilege, even in this collective trauma. Within my milieu, women, people of colour, Indigenous people and non-binary and gender non-conforming queers have plenty of stories to tell, stories that deserve listeners. All the horrors of that era can never be forgotten, nor can they be told too often.
But when you’re a Gen X queer man, it sometimes feels like queer history in Canada started with Toronto’s bathhouse raids, went quiet and started up again when same-sex marriage was legalized, as if nothing happened in between. Of course, lots did. Organizations like ACT UP, Queer Nation, and this very media outlet were established; but much the work of these movements or entities has, in large part, been forgotten, their impact lost.
The balder truth is that we were young gay men who came out right after the AIDS crisis hit, and we faced all the hateful backlash it prompted as well as its deadly health consequences. Our elected leaders were no help. Brian Mulroney, then Canada’s prime minister, didn’t like to say the word “AIDS” and did not create a federal HIV strategy until 1990. Anonymous testing was fought at every turn in every province. On top of all that, this generation was chronically underemployed, labelled “slackers” and mostly ignored by the media. This is not a call-out; it’s just how I, at 54 — and the people I interviewed, all of us part of that “in-between” Gen X cohort — feel and think. We know our stories have value, but so few of them are being told.
At this point, the “why” matters less than the long term results — where we are now. Among my peers, residual traumas linger: note that all but one person I interviewed asked to be anonymous. Not out of shame but exhaustion.
“Contrary to common belief, HIV and AIDS are prevalent in the older adult population . . . Stereotypes and lack of information continue to limit older adults from receiving the medical, educational and psychological attention they need to avoid and to combat the virus.” — Journal of Gerontological Social Work
When you ask gay men in their 50s about HIV, the phrase “double whammy” pops up often. We were children in the 1970s, when what was then-called “gay liberation” seemed inevitable. But as we entered our teens in the 1980s and began to understand our sexualities, HIV stamped out all of the progress made in the ’70s.
Coming out while a frightening disease was always present and looking for a way into your life — a disease that was intrinsically bound to your sexuality and that everybody had an opinion about (but little real knowledge of) — made being young and gay in the ’80s and ’90s at best a balancing act, at worst a very bad idea.
A lot of us simply stayed in the closet, or close to the closet door — it was better than death.
“‘Oh fuck, now there’s ‘gay cancer’ and people already hate gays” was one of my first reactions. I was 14 then and just grappling with my desires for men . . . It wasn’t until later in the mid-to-late ’80s that I really had any idea of how it was spread. It was odd coming out at 19 and then being told to be, more or less, afraid to die if you had certain types of sex.” — *Mike, 52
Anti-gay hostility reached new heights just as I was coming out. I remember open discussions in the media about segregating men with HIV, or even all gay men, and putting them into camps. In the US, the fight was made visible by folks like Ryan White, an Indiana teenager infected after a blood transfusion who was unable to go back to school because of his positive status, and Rock Hudson, one of the first celebrities to come out and tell the world he had the disease. As policy expert David Rodier recalls, “Doctors refused to treat patients. Religious leaders declared that those infected were leading unhealthy lifestyles and said they deserved their disease. Families disowned their children. . .”
Lines were drawn very quickly between people who contracted HIV from sex and people who contracted HIV some other way. For instance, the people who were given “tainted blood,” as the media referred to it, by the Canadian Red Cross were labelled innocent victims. Those who contracted HIV from intravenous drug use or sex work were considered less innocent but deserving of pity. Gay men were just dirty and irresponsible. Elsie Wayne, the mayor of Saint John, New Brunswick throughout most of the 1980s (and who later became a Conservative MP) made a point of focusing exclusively on compensation for people who contracted Hepatitis C from the tainted blood scandal; the only time she talked about HIV or AIDS was to support a bill that would allow police officers to order suspects be tested for the disease. For her, and for many politicians at the time, HIV was embodied by gay men and people they considered criminals.
I remember how gayness was handily equated with deathly illness, an illness we were told we deserved. I remember teachers in health class not being allowed to discuss “gay cancer.” I remember the great push for abstinence, which was presented to us as the only way not to die. I remember the t-shirt that read “AIDS: Kills Fags Dead.” I remember finding that funny. Shame is a strange virus too.
Sex equalled death. Period.
I was afraid of sex and afraid of being gay well into my 20s. I was convinced I’d be dead by then. I waited until I was 21 to have sex and I used two condoms, one over the top of the other, when I did. I was both that innocent and that scared. The fear that had contributed to the mass deaths during the first wave of the AIDS crisis continued to linger. Straight people, with their hearts in the right place (but who were so wrong), monitored their gay friends’ weight for signs of body mass loss, a telltale symptom of the disease. Gay men watched each other, too. It was a time when more scrutiny was placed on gay bodies than ever before, a time when paranoia ruled.
“I remember the ‘get tested’ motto was drilled into our brains. It was considered the responsible, adult and considerate thing. There was no reliable medical regimen to deal with being poz, so knowing your status was also incredibly terrifying. I remember going to the Hassle Free Clinic about getting HIV testing and the counsellors — there were 2 — asked me if I was ‘using protection.’ I answered yes. It was a lie. But because [they thought] I was using protection, I was told I didn’t have to get tested.” — *Dave, 55
“People would ask me, ‘are you clean?’”— *Markus, 56
“Fear of HIV was rolled into one big fear, which included fear of being bashed or discriminated against and fear of nuclear war. That was a traumatizing experience that did not lead me to be more sexually liberated but actually more fearful. Lots of people from my generation had anxiety and depression about being gay and about AIDS. Others seemed very prudish and almost anti-sex. There was also intermittent compulsiveness because it felt like the sky was going to fall any time: why not enjoy things while it lasted?” — *Marshall, 51
When you come into adulthood in a dark age, in a time of confusion, distrust and very high stakes, whatever you have actually achieved as a young adult always seems secondary to the bigger problems of the world. In my gang, we were all very busy making art, speaking out, building careers. But we were constantly under a cloud, a cloud so thick it obscured our identities as “gay artists” or “gay entrepreneurs” (you name it).
We were just young men waiting to die, just dirty fags, unless we were “good gays” and only had protected sex with a single partner to whom we were life-committed. Or unless we had no sex at all, and certainly no public gay life or culture, which meant you could find a decent job and “pass,” like journalist Anderson Cooper or the dozens of perfectly tailored, very masculine one-off gay characters who appeared on television but never kissed and only touched other male characters for laughs. Even very smart people read and considered the life advice given in the wretched 1996 best seller Anti-Gay, a collection of essays by British journalist Mark Simpson that suggested that gay culture was pointless and only assimilation would work.
The sexual liberation of the ’70s had stopped, cold. What replaced it was shame. ACT UP and, later, Queer Nation worked hard to destigmatize gayness and AIDS, which had become synonymous in the public consciousness. We tend to look back on that era as if everybody was in one political group or another, but it’s not true. Many of the gay men I knew, younger and older, worried that the “radicals” were going to push the straight population too far.
How were we, who had seen real, joyous gay liberation from a distance as children and teens, suddenly supposed to pivot back to the 1950s? Go back into the closet, present an acceptable (conservative) form of maleness, and almost never have sex? We, of course, failed to become this new-old version of gay, but most of the activist work we did manage to get done, while coping with complicated, ever-shifting dynamics and a progress model that had been violently interrupted, was overlooked. I was told hundreds of times as a young artist that I was “too gay,” which meant “not the right kind” of gay. You know, the clean, polished and discreet kind.
“It’s almost as if the Boomers are the ones writing the narrative of all the generations that came after. Wait. They are. They’re the ones that are in power positions as cultural gatekeepers. So yeah, fuck those guys. [In the ’80s and ’90s] you always recognized people in the [obituaries]. And they were always people you considered older. Even though I had friends my age who were HIV-positive there was seemingly little representation. Simplistically this disassociated my connection to HIV because it was perceived to be something that happened to others, older others.” — *David, 55
“I tended to stay in crappy relationships because I thought that was better than the lonely and seemingly riskier alternative of having multiple sexual partners.” — *Marshall, 51
We had the weird disadvantage of being shown a life full of possibilities and freedoms and then having that life yanked away before we even got to live it. Our adult lives have been spent rebuilding that ’70s wonderland but in the most tentative and anxious manner. To this day, I am chronically suspicious of all promises, policies or organizations. I have major trust issues, and I know I am not alone.
Everything seemed so harsh. There didn’t seem to be much safety. I saw people in relationships and just didn’t think I was going to live long enough to ever really have one that lasted. The idea of a treatment or cure for HIV seemed preposterous. — *Marshall, 51
I don’t even trust what I’m doing now, writing this essay. Nevertheless, and forgive the cliché, ignore our stories at your own risk.
I came out young and saw something of the first gay world, so when the plague years began I had an overwhelming sense of having missed out on something that seemed, to me at the time, very special, a sense of deep loss. — *Jean-Paul, 56
We inherited a broken promise of freedom. Subsequently, bitterness and terror determined our early adult lives. Our stories need to be heard now more than ever, in these times of new terrors and new grudges.
Sure, HIV is not the threat it once was — if you are lucky and live in the West — but it was never the real problem anyway. How we handled HIV was the problem.
Now it seems the whole planet is unwell, aching with disease and on its last legs. Hear us before you become us.
We are survivors of a plague, we carry the scars of all those lost lives and all that terror and fear and ignorance. And yet, this part of our story is largely forgotten, swept aside by more pressing needs in today’s conversations about sexuality. I only hope that what we experienced is remembered. We battled the AIDS epidemic and as the lucky ones who survived, will carry those scars forever. — Laurie Lynd, filmmaker
*names changed
Why you can trust Xtra
