You Have to Speak Up and Continue Speaking Up

User Rating: 0 / 5

Star inactiveStar inactiveStar inactiveStar inactiveStar inactive

Another World AIDS Day, 2013

December 1, 2013 will mark the 25th World AIDS Day, started in 1988. Yet, how many of us remember AIDS going back even earlier: to those first terrifying glimmers of this “gay disease,” “the gay cancer,” the thing people could barely think about that menaced us so much?

The idea at that point of mixing the covert, mostly unseen lives of gay men with issues of health seemed almost impossible to voice. The mix was too volatile. Too upsetting. It attacked the smug face of the “stigma” largely placed on the lives of gay and bisexual men.

The great joke from those early years of HIV: “What’s the worst part about having AIDS?”

Answer: “Having to convince your parents that you’re Haitian.”

Yes, that said a lot about the fear of coming out of hiding then.

For a short while the three great recognized AIDS population groups were, gay men, intravenous drug users and finally…Haitians. Why Haitians? I’m not sure. Public health people had to pick on somebody, so impoverished Haitians popped up.

Later, we’d know that AIDS was a worldwide phenomenon—no one was going to be left out of it. The real problem, though, which I understood completely having been involved with gay health since 1972, was that the emotional and sexual lives of gay men was not a joke. Our lives made people queasy, angry, fearful, prone to “dying from embarrassment,” prone to extremes of violence (both giving and receiving it), and prone to packing up and leaving town—but this was no joke.

Jokes were for the jerks who could not come to grips with the fact that something real was stalking us, and we had to take destiny into our own hands to survive it. In 1991 I made a list of people I knew personally who had died of AIDS: I stopped at 37.  I could not go on any further. This was not just an epidemic. It was a war. In most wars, combatants can’t count 37 corpses they can actually identify. But I could.

Some of my friends in New York could count 75, or a hundred or more. It left us battle fatigued. It left a whole generation of us with a different kind of PTSD: for some of us it meant that we would not be able to establish an intimate relationship again. For some it meant that we would be left with a source of anxiety, dread, and desperation always standing in front of us.

Yet for others, it meant that we would now have to grab life by the balls. We saw how fragile and fleeting every day was. (As one of my close friends with AIDS said: “There’s one thing this disease has taught me. It’s that there is no room in my life now for bullshit.”)

So we saw how necessary it is for us to honor our lives—past our own fears and problems—especially the problems of being overlooked and marginalized as gay, even now in this new age of openness and even same-sex marriage.

But even this new age of gay marriage, of amazing, almost startling openness and media queer celebrity, has come about because so many of us, due to AIDS, had reached that point of no return.  We finally understood there was no more hiding:  You can dig your own grave in your own closet, unless you speak up. That even those who survived HIV due to the miracles of various drugs and strategies still had to speak up and continue speaking up.

That is the thing I understand now at this twenty-fifth anniversary of World AIDS Day—the international response to AIDS day—that you have to speak up. Our lives are important; they are not things to joke about in order to cover up the embarrassment that came from our very existence. We are no longer a “sensitive subject.” And we are ready, openly now, to face tomorrow in a world beyond AIDS, no matter what comes.

I think this is especially true in the case of long-time survivors of AIDS, and new survivors as well. Both groups have something to learn from each other. I have many friends who are long-time survivors: who have survived 20, even 30 years of being HIV positive, with initial diagnoses going back decades.

For them life has revealed much greater vistas than they ever thought they’d see, a landscape punctuated and marked by periodic “problems.” Moments when drugs suddenly had to be recalibrated and rebalanced; when some minor infection might blow up into a major-league threat; when the emotional and psychological burdens they’d been carrying would overwhelm them. These men (and they are men for the most part) are part of an amazing generation that is now being recognized.

But there is another generation too that also needs our huge love and support: younger men who for whatever reason have become newly infected with HIV. These men often feel hugely embarrassed and ostracized. They hear, “You should have known better. You stepped on this land mine after you’d been warned.”

But life, as we learned from the very beginning of this struggle in the early 1980s, does not work that way. The only thing that works that way is ignorance and bigotry, and the kind of fear they both love. As much as we want to encourage people to use Safe Sex and protections, some men are still coming down with HIV, and these men need our support too, and love. What they are going through is not easy; and it will get harder. Despite all the knowledge and drugs we now have, we still have very little knowledge of what a lifetime of HIV pharmaceuticals does to your body. These include physical, psychological, and emotional side effects, as well as dealing with our own American healthcare system and, as we know, its many drawbacks.

So we need to be prepared to see that this war is not, by any means, over for us. We need to see that on this Twenty-Fifth World AIDS Day, and remember it.

In 1972, Perry Brass, with three friends, started the Gay Men’s Health Project Clinic, in New York’s Greenwich Village, the first health facility specifically for gay men on the East Coast, still surviving as the Callen-Lourde Community Health Center. He is featured in All The Way Through Evening, a new documentary on young composers who died from AIDS, and is the author of 16 books, the most recent is King of Angels, a Southern gay Jewish coming-of-age novel set in Savannah, GA, in 1963, the year of John Kennedy’s assassination; and previously The Manly Art of Seduction, a how-manual on living life positively and achieving your goals. He can be reached through his website www. Perry Bass