Op-ed: Why the Next Generation Needs Us to Talk About AIDS

As three decades of AIDS were marked in 2011, it was startling to see the degree to which Americans' notoriously short memories had already begun to airbrush away the experience of their gay countrymen's devastation and defiance in the plague years. Accustomed by now to thinking of the "face" of AIDS as that of an impoverished, dark-skinned African woman or baby, even the nation's best-educated young people seem not to be aware of the plague's impact here in their own homeland, beginning in the very decade when many of them were born.

"The de-gaying thing really worked," said author and Dartmouth College professor Michael Bronski. "For better or worse, we did our jobs." As evidence, Bronski described a class he taught about AIDS, called "Plagues and Politics." He said his students couldn't understand why he spoke of AIDS as a "gay disease." Even a lesbian student told him, "I thought it was a little weird you were talking so much about 'gay.'" She believed AIDS "was Africa and inner-city drug users, but mostly Africa." Another student said, "I was wondering how you were going to bring in the U.S. part."

Young gay men can be forgiven for not knowing the details of their community's recent travails. They didn't live through the nightmare, after all. At the start of the millennium, The New York Times noted that a generation of young gay men had by then already come of age without seeing their peers suffer and die from the horrific and disfiguring effects of HIV before HAART brought such dramatic change for many of those living with the virus.

Older gay men, many having lost lovers and friends and possibly living with HIV themselves, seem to prefer pleasanter subjects than the horrors we lived through. It's understandable, to an extent. As with returning war vets, the grief and shock sustained by our wounded warriors keep so many of us silent.

Unfortunately, our silence means our younger brothers are far less likely to learn about the bravery, courage, and creativity with which our people faced the fight of our lives, for our lives. "Gay men in their 40s and 50s don't want to talk about AIDS," said longtime activist and former National Gay and Lesbian Task Force director Urvashi Vaid. Hundreds of men in that very age group streamed by as we talked on a brilliant August Saturday outside Joe, the Provincetown coffeehouse. They looked festive, if grayer and a bit less slender than when we partied in our 20s at the Boatslip's daily tea dance. "We all have PTSD [post-traumatic stress disorder]," said Vaid.

Our silence means the organizations we created to care for our sick and dying friends and neighbors are struggling to raise funds as they continue to care for people with HIV. In Miami, CARE Resource director Rick Siclari said, "White gay men are not giving as much today." Now the agency is hoping its new clients, many of them black and Latino, will participate in fund-raising by giving them the chance to make smaller donations, in the $5 to $10 range.

It's as if we haven't learned one of the most important lessons that we ourselves taught the world: "Silence = Death," as ACT UP famously put it. It would seem that silence is inexcusable when gay and bisexual men of all races continue to bear the overwhelming brunt of the American AIDS epidemic.

Even in hard-hit San Francisco, Stop AIDS Project director Kyriell Noon told me in April 2010 how dismayed he is that HIV has become so seemingly commonplace in a place so harshly affected by it. "I have been surprised by how blase so many men seem to be about HIV," he said. "If they're positive, they seem blase about transmission. If they're negative, they seem blase about acquisition. If they don't know their status, they're blase about that. Nobody seems to give a shit anymore. There is no urgency these days."

As of June 2010, AIDS had killed 19,199 San Franciscans. Nearly 16,000 more were living with HIV, 88% of them gay and bisexual men. Of them, 9,062 not only had HIV but also had experienced at least one of the conditions that are considered "AIDS-defining." These "classic" markers of advanced untreated HIV disease date from the earliest years when people learned they had HIV only at the point they developed the purple lesions of Kaposi's sarcoma on their skin, or were rushed to the hospital with life-threatening Pneumocystis carinii pneumonia. The conditions still show up in considerable numbers of people diagnosed with AIDS in San Francisco.

Walking toward Market Street after finishing my interview with Kyriell Noon at Stop AIDS' Sanchez Street office in the Castro district, a poster on the Muni bus stop caught my eye. It showed a muscular white man's back. I focused on the words "Stay Negative" tattooed across the back of his hands, folded behind his head.

Clearly, San Francisco has not forgotten the plague that filled the bay with tears and forced its citizens to rise up and show the world what "traditional values" look like when they are practiced rather than preached. A stroll through the city's AIDS Memorial Grove reveals in the beautifully landscaped, serene seven acres within Golden Gate Park a deep ache in the heart of this city's gentle people. The words "Healing, Hope, Remembrance" are engraved in the granite pavers of the grove's Circle of Friends. Yet even here, in this sacred space honoring the memory of the many whose lives have been cut short, and the many more uninfected friends and family, still living, who have been forever changed by AIDS, it's also clear: We want to move on. On another stone is etched the Yiddish toast "L'Chaim -- to Life," a reminder to live while we are alive. As early as 1995, Eric Rofes, then living in San Francisco, wrote in Reviving the Tribe that we were worn out by the need to keep constant vigilance and live in perpetual crisis.

Thirty years since American gay men began to die of AIDS, effective but expensive and toxic treatment has rendered infection with the virus that causes the fatal illness as close to a chronic, manageable condition as it has ever been. Relieved after years of disease, death, and the threat of infection hanging over every intimate encounter, many privately insured middle-class gay men -- including those living with HIV -- moved on. Talk among activists has grown more excited about finding a cure for HIV. But even a cure will be of limited benefit when half of those infected with the virus don't know it. Even in San Francisco, the epicenter of AIDS in gay America, most people who test HIV-positive don't realize they are infected because they have no symptoms.

Today, the national gay political organizations, once the most outspoken champions of gay men at risk for HIV, are consumed with fighting for the right to "marriage equality." In their view, the HIV-focused organizations are "taking care of" the politics of the epidemic. But those organizations stopped advocating for gay men back in the 1980s, when they realized women and children were less "controversial" than standing up for the gay and bisexual men most in need of advocacy because most widely affected.

With no one looking out for gay and bisexual men, especially men of color, and with the pernicious 1987 Helms amendment still blocking federal funding for realistic prevention programs, taxpayer dollars intended for HIV prevention continue to be squandered on general information campaigns rather than paying for targeted, explicit campaigns aimed at those who most need them. Prevention educators continue to puzzle over how best to reach both young and not-so-young men with messages of hope and healing that are desperately needed by people who experience appalling cruelty and hatred at the hands of peers, too often parents, and American society at large. Meanwhile, recent research into gay men's love lives is yielding fascinating new ways to tailor HIV prevention strategies based on an individual's personal information.

The deadly silence resounds across gay America, from New York to San Francisco, in bedrooms and in boardrooms where the leaders of gay and lesbian organizations meet to discuss their priorities, which always seem to leave out HIV. Young gay men don't want to hear about the struggle and suffering of their community in the darkest years of the plague. Older men, survivors, likewise don't want to talk about it, instead withdrawing from the gay community after years of grief and rage.

As a fourth decade of AIDS begins, the challenge remains to transmute our losses and victories in the AIDS years into an inspiring story of love in action. As always, it will be up to each of us to draw the strength we need from our individual and collective resilience. Spanning the generations of age and experience, mentors can help teach their younger proteges to tap their, and our, resilience by sharing our stories of courageous men and women who refused to surrender. In these stories of this latter-day army of lovers lie gay America's heroic legacy, our hope, and our future.