Life After Death

Thirty years after HIV/AIDS was first identified — after it decimated gay communities across the country — a new generation comes of age in its long shadow
“You have to understand,” he said. “AIDS was gay culture. All the big events were AIDS fundraisers. All the plays, all the movies were AIDS plays and AIDS movies. It was a complete and total obsession, driven by a barely managed hysterical fear on everybody’s part.” The rallying call was simple: “Silence equals death.” The woefully inadequate response to AIDS in the early years was due largely to the invisibility of gay culture. AIDS forced its prey to fight for their lives and dignity, which in turn spurred a rapid acceleration of gay rights.

I nodded quietly as Bryan told me about friends he had buried, as one must when hearing other people’s war stories, attention being the only appropriate contribution. One of his greatest friends had died just weeks before the drugs became available. “What happened in 1996, then? ” I asked. “How did things change when the drugs came out? ”

Bryan sputtered, the way he does when three books are trying to exit his mouth at once. “Everything changed! The whole body of assumptions everyone carried around was gone. The death sentence was gone, virtually overnight, and the disease immediately went underground. Within a breathtakingly short period, it went from being a thing everybody talked about to a thing nobody talked about.”

“How do you think people my age and younger are dealing with it? “ 

“When you have sex, you mean? You’re all as sexually active as gay men have ever been. But you’re wrestling with an unseen ghost. In the days of the death sentence, they told us how to minimize risk, and they told us all the time. Now the level of HIV education has plunged. The focus is on treatment instead of prevention.” 

He’s right: at last year’s International AIDS Conference in Vienna, Vancouver’s Dr. Julio Montaner, whose research team was among the first to prove the efficacy of those drug cocktails, led the cry for “treatment as prevention” (the idea being that lowering viral loads through drugs ultimately lowers transmission rates). But the pendulum has swung so far away from targeted prevention initiatives — posters above urinals at gay bars, say — that a Canadian group of veteran gay health activists has brought a complaint before the Human Rights Commission, demanding that funds be supplied for gay-specific campaigns. Gens Hellquist, who spearheads the action, told me that homophobia keeps our government from allocating health funding to underserved gay, lesbian, bisexual, and trans communities. And other health activists told me that the initial push to categorize AIDS as “anyone’s disease” (i.e., Magic Johnson got it and so can you) means that any proposal containing the word “gay” is now less likely to receive funding.

Public health strategists might point out that while early HIV reports, back in 1985, showed that gay men accounted for over 80 percent of cases, that number has dropped to 42 percent today. However, they still make up the largest category; heterosexual transmission accounts for only 31 percent of new infections. And although a great deal has been made in recent years about rising rates among women, the proportion of female cases stopped growing more than a decade ago.

Meanwhile, a startling new study out of Vancouver tells us that of the more than 20,000 gay men who live there, nearly one in five has contracted the virus. The same study found that almost a quarter of those men under age thirty have never even been tested.

For my friends and me, “post-AIDS” refers to more than a disease. It means post-protests, post-outrage, post-victimization. It touches our entire lives and leaves us with a deep-seated and cruel distaste for the sissy boys who have dominated our representation in films and TV (after all, wasn’t it the bottoms who got AIDS?). It means vainly attempting to make up new ways of talking, walking, and loving, because the old ones carry the stain of disaster. We are the first generation of gay men to grow up free of overwhelming oppression and imminent crisis. Growing up after AIDS means profiting from the civil rights battles it occasioned.

But in some ways we are still hopelessly lost. A generation of men who could have been our mentors was decimated. The only thing we learned from observing them was to ruthlessly identify “AIDS face,” that skeletal appearance the early HIV drugs wrought on patients by wasting away their bodily tissues. But those faces grow more rare each day. And without the agonizing deaths to serve as warnings, without the ravaged bodies that once testified to the reality of HIV, many of my peers have found themselves “slipping up” during sex without being terribly concerned.

Gay men, like anyone, are well aware that we ought to use condoms. Just as the more than five million smokers in this country realize that the benefits of nicotine are limited to momentary gratification. Just as the more than two million Canadian diabetics know that chocolate cake is a transitory pleasure with real consequences. We, none of us, live rational lives. We rely on concerted efforts by health agencies to counter the haplessness of our lived experience. And this is doubly so when it comes to HIV; having never known a world without the virus makes it hard to even notice the thing. How long, really, can a small segment of the population be suspended in catastrophe?

I’m the same age as the epidemic. By my first birthday, eight young gay guys in New York had developed purple tumours on their skin, which turned out to be a rare cancer called Kaposi’s sarcoma. Those boys had AIDS, though there wasn’t a name for it yet.

That year, 1981, an unknowable number of men slept (shamefully or shamelessly) with each other and unwittingly consigned themselves to early deaths. That year, before the tears and the placards, before the suicides, the broken families, and the funerals, an inferno began its relentless unfolding. (One of the most insidious characteristics of HIV is that it can take years before its effects are felt, which leaves one plenty of time to unknowingly pass it along.) That year, my future best friends and I, seemingly far removed from AIDS and from each other, learned to crawl in the undestroyed homes of our parents.

In 1983, Time magazine made AIDS its cover story — “The AIDS Hysteria” read the cover line — and my mother, fascinated, preserved that issue by pressing it between books on a shelf, where it sat, undisturbed, for decades.

At twenty, I told her I was gay. I managed this feat, unforgivably, during a ten-minute coffee break, when she stopped by a café I was working at. She mostly said the right things. But when I came home later that day, she was slumped on the stairs beside a forgotten load of laundry. “I just worry,” she kept saying. “I worry for your health.” We both knew what she was talking about.

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20 comment(s)

BrennanAugust 18, 2011 18:06 EST

Fantastic piece. Informative, moving, and well written.

LaraAugust 18, 2011 23:10 EST

This was an excellent piece - an informative but essentially human look into a culture that most of us never see. Beautifully written!

LenAugust 19, 2011 15:36 EST

What a powerful, moving, thoughtful article. As a 30-year old queer guy who's worked in HIV for almost a decade, and whose gay uncle died of AIDS in 1998, it resonated strongly with me on many levels. Indeed, trying to form new queer identities that aren't implicitly and explicitly tied to the sadness/fear of HIV has been a struggle. While I worry that young queers men's distancing from HIV is isolating for those of us who are poz (and an ever-increasing number of us are), I am thankful and hopeful at the fact that younger generations will not be quite so devastated by the loss of so many of our peers. We have a lot of work to do in terms of re-working HIV into our identities and lives in meaningful, visible ways. It is a new and different struggle; but as our queer ancestors have taught us, we have more than enough strength, courage, creativity and tenacity to overcome it. Thank you so much for putting into words an experience and struggle that is so unique, and so personal.

AllenAugust 21, 2011 10:29 EST

Excellent article. As a fifty year old, HIV negative guy, who began having sex with men in the late 70's (with wild abandon) and then spending a decade watching an entire generation die, I can tell you that the emotional wreckage is substantial, yet oddly ignored.

Like many gay men of my age, I have spent my entire adult life living in the present, with an eye on the future... and the past, while informative, seems so detached and spectral. There's a vague sense of loss, not only for those who actually died, but also for a generation of gay men who's lives would likely be very different if they had not spent a decade convinced they would be dead by the time they were forty years old.

AnonymousAugust 21, 2011 10:29 EST

Great article. I lived in NYC from 1978-83. Was in the thick of it all and have probably been positive since 1981 although not diagnosed until 1985. I\'ve experienced or seen most of the fallout of this plaque. One thing I\'ve learned that is never discussed is that you only hurt your parents more by not telling them about your HIV status. I can\'t count the times I\'ve seen horrified parents finding out their son was positive as he lay on his death bed. As hard as the news may be they all would have preferred to have the opportunity to care for and love their dieing son. They are your parents. They deserve that. That\'s their job. How many times have parents of dieing friends told me they wish they had know and had the opportunity to be there their son.

Its awful news and your instinct to protect them in understandable but I\'m telling you from experience. You\'re denying them the only thing that can give them some peace after you die. That they did what they could to make your last months or years better and to come to terms with your death. Life is often cruel, its part of the deal. They\'re adults and will deal with it.

If you\'re poz and afraid to tell your parents, please consider this point of view. Even if you\'re healthy and undetectable why deny yourself their support and love. That\'s what they want to give you in good times and bad.

ChadAugust 22, 2011 01:12 EST

This essay perfect (i.e., elegantly and thoughtfully and poignantly) captures the liminality of the "gay experience" of the 30-something-year-old homosexual: of wanting—indeed, feeling entitled to—"an ordinary life with an ordinary man and an ordinary golden retriever" in the long shadow cast by HIV/AIDS (both qua physical condition and qua psychological "cipher for everything that constrains [our] sexualit[ies] and [our] potential[s] for happiness"). It was a beautifully realized reflection on our experience, and a call to action for those of us who wish to believe that the Plague Years are merely a relic of a quickly fading, nearly incomprehensible past. BRAVO!

MartyAugust 22, 2011 12:40 EST

Bravo, Deja Vu for those of us pre-HIV. There is no longer enough attention paid to the fact that this Virus remains fatal. Here in US, wer'e so used to going to a Doc for a prescription, that few things mean more than another pill.

The article was extremely well written. How can we get it into the hands of every 16-28yr old?

In our Culture, living to 29 as we become Senior Citizens, is multiple decades away from 20. The realization that HIV remains deadly, comes far too late.

This, coming from someone who's burried friends and chosen "Family", by the dozens.

HelloAugust 22, 2011 19:54 EST

What an amazing article! Thank you for writing it. Also, @Anonymous, thank you for your comment. It is extremely profound. It is food for thought but I am still not sure how I feel about it. We also want to protect our parents.

ElfredAugust 22, 2011 23:54 EST

This is an incredibly sincere article. Realistically fearful but hopeful. I think that every young gay man will find this deeply familiar.

Lisa WAugust 23, 2011 12:10 EST

Wonderfully written piece. Very honest and thoughtful.

Lady BAugust 25, 2011 09:18 EST

Where to begin? And how not to echo the many eloquent comments of this equally inspired piece? It was moving and informative and I agree - how to get this into the hands of young people all over? This would also be a great addition to the We Demand conference happening this weekend in Vancouver. It's such a brilliant and personal take on something that has indeed become invisible to those of us who grew up with HIV / AIDS as having 'always' been with us. I also appreciated the reminder that we have become dangerously complacent about our civil rights. Radical queer politics...where are you? I will come back to this article many times and have already shared it with many friends. Silence does equal death. And so does assuming that the conversation is over. I'm glad that this one is still on the table. My hat off to you, sir.

ColumbusAugust 25, 2011 14:29 EST

This was an amazing article! I'm reminded of my own coming out experience with my mother a few years ago. She was a nurse during the early 90's, and she had so many stories of patients' and friends' (neither of which were mutually exclusive) battle with HIV. When I came out she cried, picturing me in the hospital beds that her friends had lost their lives in.

I sent this article to my whole family and just had an amazing two hour conversation with my mom about it. It was one of the best interactions I have had with her in quite a few years.

For that, I thank you Michael Harris.

staceAugust 25, 2011 20:59 EST

As someone from an even younger generation, I never even think to worry about the safety of my friends and family. But within my lifetime, HIV/AIDS was an active horror. It's shocking to realize how quickly we've become complacent and taken medical advances for granted. What
else uses treatment as prevention? Why do we think that that's good enough?

Consider my thoughts provoked. I hope to read more from Michael Harris in the future!

APRILAugust 27, 2011 17:09 EST

Thank you Michael Harris. Poignant, powerful, and well written.

Randy ReichertAugust 29, 2011 15:33 EST

It is interesting to see how those of us who are out of the closet live. I have a hard time trying to tell my close friends about being gay. I can't imagine being okay with being POZ.

H.M.August 30, 2011 10:05 EST

Thank you for publishing such a poignantly written article.
As a heterosexual, I also found the comments that \"heterosexual transmission accounts for \'only\' 31 percent of new infections.\"
\"And although a great deal has been made in recent years about rising rates among women, the proportion of female cases stopped growing more than a decade ago.\" Was this around the same time that the campaigns for public awareness decreased?
Combined with that statistic that \"almost a quarter of those men under age thirty have never even been tested\". Consider how many fewer heterosexual men and women have been tested? In my limited dating experience, men detest wearing condoms, so the potential for undiagnosed heterosexual infections and thus heterosexual transmission is probably higher than 31%.
Dr. Chris Tsoukas diagnosed the first HIV positive woman in Canada, after she was first sent to a psychiatrist to try to convince her she wasn\'t positive. We have come a long way since then but there is still a great need for public education in all segments of the population.

DavidSeptember 09, 2011 16:10 EST

I am a gay man in my 50s who lived the entire nightmare from sex in the wild 70s before AIDS existed through the darkest days and into the post-AIDS era and now the LBGTQueer era. In all that time, through all that loss, I can conclude now that IMO the new Queer movement where gay is subsumed into the other letters in a gender identity politics has done the most damage to cultural transmission between generations of homosexual males. No discourse is allowed any more that is by and for gay men only. This is exclusionary of trans and queers and others. The result is that lessons that could be learned, information that could be shared, stories that could build a community of men looking out for men is cut dead because it does not include the other queer letters. This development's contribution to the current AIDS rates and non-existence of any gay male community (outside of commercialized gay product culture) is taboo and unspeakable. Like many of my aging gay peers, I have withdrawn entirely from anything resembling the LBGTQueer community as it does not have anything but hostility and indifference to the gay men who are often now seen as the oppressors of queered people. Hetero kinksters are celebrated while gay men pushing marriage in the US have been labelled as enemies of Queer. It's your world, young people. It ain't mine. Good luck.

MelDecember 01, 2011 17:06 EST

Well said, Spud. You make me proud to know you. XO

Kevin SpenceDecember 01, 2011 18:01 EST

Well-penned Mister H. I can only imagine what literary treats you would churn out from a comfortable hovel on Salt Spring Island! Keep it up...

AnonymousMarch 25, 2012 19:52 EST

This hit very close to home. Recently diagnosed in in May, 2011. I have struggled with the decision to start medication and when the right time is. I reached that decision in the last two months. This article reinforces that decision. I will be happier. I could not describe why, but this story helped me figure out what I have been feeling for the last while. There is a poison running through my veins. I can do nothing. I feel contaminated. I see only negative people who cannot possibly understand the burdens that come with the diagnosis. I thought I understood having many positive friends around me. No big deal, right?

One cannot understand until they are told they are positive. My life changed and instead of living with great joy, I live in fear and panic and a sense of being very alone although I not alone at all. I feel that some of these feelings will resolve with starting medication. Thank you for sharing.

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