by Mark Segal
The point being that if they called me in, the reviewer would have had to sign a paper saying that he or she had read my complete file. Most likely, unless they had hours and hours to spend sifting through newspapers, they would not have. I’m not sure if that was the actual reason, but I never did get a call from the draft board.
If there ever was a time for creativity in the gay community, it was when we were fighting for our lives in a different deadly war. This war started with one word: AIDS. To put it simply, AIDS in the US affected and defined the LGBT community more than any other issue in our history. Everything from coming out, politics, organizing, to how we dealt with each other changed due to AIDS. To this very day, its impact on the LGBT community has not been fully and honestly dealt with. For many, the anger still seethes of being witness to a government that callously ignored our very existence. For others, the residual effects are pervasive grief, crippling fear, personal, emotional, or physical trauma, and the experience of what is commonly known as survivor’s guilt. Even in these days of drug cocktails and preventative care, there are always new controversies that arise around the AIDS crisis. When it first started, every single aspect of the disease was a raging battle. In many ways, it still is.
We seem to still be afraid of saying the obvious: AIDS was a virulent war that an entire generation of gay men got drafted into, whether we wanted to serve or not. It’s not enough to say that it was on par with serving in Vietnam, Iraq, or Afghanistan. Vietnam cost 58,000 American lives; AIDS, so far, has cost more than ten times as many. Does the US government owe restitution for ignoring the safety of millions of gay Americans? They provided it to people with hemophilia, who contracted HIV from tainted blood products. They gave it to Japanese Americans who were imprisoned during World War II. We weren’t imprisoned; we were just left to die. After all, it was merely the gay disease—the gay cancer, as they first labeled it. What harm could it possibly do to them as non-gays?
Something should become very clear, no matter who you are. Whether a member of the LGBT community, a government bureaucrat, a health professional, or just someone attempting to understand our community, we should still be afraid of AIDS. It seems that most people don’t even want to know the statistics of the heavy toll, nor do we want to deal with the trauma of those left behind. We pretend that it’s over. It’s not.
A couple of years ago at the Walter & Elise Haas Fund’s annual LGBT media conference, organized by Bilerico Project’s leadership, Bil Browning and Matt Foreman (formerly of the National Gay and Lesbian Task Force), one of the attendees, Mark S. King, asked if the LGBT media had dropped the ball on the coverage of HIV/AIDS. This spurred an incredible e-mail dialogue where many of the journalists pointed out areas where LGBT media might be lacking. As one of the longest-serving members of the LGBT media, my answer to that question was and still is yes, there are areas where we are deficient. I’d suggest that the question might be asked in a different way, but the answer, no matter how it is framed, is still yes.
From 1955 through 1975, the US was involved in a war in Vietnam. During that time 58,220 American service members were killed. If we add the Gulf War, the second “Desert Storm,” and our subsequent involvement in Iraq, where 7,000 service members were killed, we find that America lost approximately 65,000 lives to these wars.
In 1982, as reported by the Centers for Disease Control, AIDS became an official disease in the US. Since then, over 600,000 people have died of AIDS here. So you may ask, what’s the connection? Survivors. Many of those who went to any one of the aforementioned wars, or endured other US military involvements, have suffered what is called post-traumatic stress syndrome (PTSS). Post-traumatic stress syndrome came from the stress of being in a war and witnessing fellow soldiers get badly injured and die. Would those who witnessed their friends die from AIDS also suffer post-traumatic stress syndrome? I think so. That said, there are many external differences between the two groups of people. While the surviving soldiers of war were considered heroes (with the exception of Vietnam vets who were often mistreated), AIDS patients were treated as trash. Those who died were sometimes refused embalming, funerals, and burial. Some were actually put in the trash heap outside of hospitals. Those of us who fought for dignity in death were forced to take on the government, the health care system, and, in some cases, our very own community. It was a war and it was hell for the victims and survivors. Anybody who lived in that period has their own stories of survival, and they are as terrifying as any of the wars mentioned above. Have we in the LGBT community tried to ignore what we went through? The answer is yes. How often do you hear someone of my generation talking about it?
One treatment for post-traumatic stress syndrome is coming to terms with it by repeated discussion. We in our community shy away from this discussion, and the health care resources that could have helped us deal with it were never given to us. Today, when we try to talk about HIV/AIDS with our youth, they are often uninterested and don’t want to hear about a time when sex was dangerous. After all, youth is a time for sexual experimentation, and with the advances of HIV medications and treatments, it can seem like a moot discussion. Conversations around the topic are sometimes labeled old and we are told that we shouldn’t deny the young their freedom.
We lost scores of friends. Our people were refused treatment. We had to beg to get our friends buried with any level of dignity. Families of those who died from AIDS were forced to feel ashamed, and many times the funerals were held in secret and the death certificates were fraudulent. Causes of death were listed as cancer, heart failure, pneumonia, or anything else but AIDS. Those of us who survived and were up close and personal with the disease now have what is traditionally called survivor’s guilt.
There is not a gay man alive today who went through that time period and, at one time or another, did not think he was going to be infected. Just a bruise would make you believe you had AIDS and were going to die. While taking a shower on a trip to Israel, I noticed two bruises, one on each arm. For three sleepless nights and days I was consumed with fear until I got back home. The reality was that the bruises were from the way I was carrying my hand luggage, yet the anxiety from worrying about my health status was real.
Did people actually want us to die? Was that a solution to societal issues with gay people? During the height of the plague we had just begun to find sexual freedom. Once we knew that the disease was transmitted through sex and through sharing needles, some believed that the government would use AIDS as a way to recriminalize sodomy or any form of gay sex. Joe DiSabato, who represented many of the newspapers in the LGBT community to national advertisers, went to the largest maker of condoms and asked them to advertise in LGBT media. They refused, saying that the content in our publications was too sexual. More sexual than condoms? They didn’t want the world to think of their condoms on gay dicks. Perhaps they thought straight dicks wouldn’t buy them. We were too dirty, we were trash, and our lives were not to be saved, at least not by condoms. To be fair, they’d sell them to us for a cheap price, but publicly they wanted no connection to gay men.
AIDS to Americans was a gay disease, and to many uneducated people it was a disease carried by all gay men. Gay equaled AIDS, AIDS equaled gay. In California, there was a discussion about a referendum on whether to set up containment camps. Proposition 64, a California referendum that would have required mandatory reporting of AIDS to the Department of Health Services, actually made it to the ballot (and was ahead in the polls at one point). Torie Osborn, Bruce Decker, and David Mixner ran the campaign to defeat it. People like Reverend Pat Robertson and Jerry Falwell took to their pulpit and declared that this disease was a punishment from God. It still haunts me that on a television talk show that I did on AIDS, the union stagehands refused to attach the microphone to me. They left it aside and explained how to do it myself. They did not want to touch a gay man.
According to the government, whose primary job is the security of its citizens, we weren’t people. Du
ring the early years of the Reagan administration, the government spent more funds on protecting livestock, fish, and poultry than they spent on AIDS. Even the surgeon general at the time, C. Everett Koop, later expressed sadness that during his first four years he was not allowed to touch the subject. Finally, when he issued the first detailed report on the study of AIDS, his attempts at spreading the word were seen by some as an effort to victimize gay men and brand us as outcasts.
Sean Strub’s book Body Counts: A Memoir of Politics, Sex, AIDS, and Survival has a good description of the community’s actions during this time. His perspective as a survivor is invaluable to anyone studying the subject. At a speaking engagement with him in 2014, he impressed me with his incredible scope of knowledge, and unlike other survivors he tries to be diplomatic and create needed discussion. Another top-notch depiction of that era can be found in Larry Kramer’s play The Normal Heart, which shows the utter conflict within the community over this issue. In addition to being one of the founders of Gay Men’s Health Crisis (GMHC), he also established the AIDS Coalition to Unleash Power (ACT UP) in 1987. In my view this was his finest achievement. ACT UP went back to the roots of Gay Liberation Front, and even zaps. It used street-theater tactics to get the public’s attention, and succeeded far beyond anyone’s expectations. ACT UP was Political Theater 101, and Larry is certainly theatrical.
According to David France, the award-winning filmmaker of How to Survive a Plague, the New York City government spent a paltry $24,500 on AIDS by 1984, even after the city had created the Office of Gay and Lesbian Health Concerns. A New York Times article of August 27, 1989 reported: “Mayor [Koch] says he is meeting the challenge. ‘We do more on AIDS than any other city or state in America . . .’”
There are two main speculations about the Koch administration’s lack of attention to the AIDS crisis. The first is that he was a closeted gay man and the second is that some communities affected by AIDS rallied hard for it not to be publicized, specifically the black community, where homophobia in some segments of the church was rampant. In the case of the latter, I believe the LGBT community did not work closely enough with the black community, which could have provided greater lobbying and thereby galvanized more support from the city. The effort to combat this public health catastrophe required public, private, and government intervention.
While in New York the funding for AIDS was limited, in other cities the funding grew and information flowed. This is all somewhat amazing when you realize that in the private sector, New York was actually a leader. GMHC was at the forefront of showing the nation how to serve the needs of patients with AIDS, and certainly how to fundraise. American Foundation for AIDS Research (amfAR), the first major organization to fund AIDS research, was also based in New York.
But compare New York’s public officials with those in a city like Philadelphia and the differences are striking. Around the same time in the eighties, Philadelphia’s first African American mayor, W. Wilson Goode, announced that he was not only creating the AIDS Action Coordinating Office, but he was also doubling the AIDS budget. The city did not have the same resistance from the African American population, possibly because the mayor provided better leadership and faced the issue as a human crisis.
The media in Philadelphia also came out in support of a stronger response to the epidemic. Unlike New York, where such enlightened publications as the New York Times downplayed AIDS until much later, Philadelphia stood with the community. While mainstream media might have been light on coverage, it was during this time that LGBT media all across the country stepped up to the plate and found their collective voice. It was to the LGBT media that the community looked to find information about new research and proper organizing. Out of necessity, some of the LGBT publications published only AIDS news and information. Needle exchanges, safer sex practices, condom distribution, and buyers clubs were broadly written about.
On June 26, 1987, Mayor Goode, along with media heads, public health officials, and AIDS activists, held a morning press conference to declare AIDS Awareness Day in Philadelphia. If you lived anywhere near the city it was literally impossible to ignore the messages. The primary purpose of the conference was to give people the information they needed and allow them the opportunity to apply that information to their own lives.
For AIDS Awareness Day, the two daily newspapers, the Inquirer and the Daily News, along with the Philadelphia Tribune, America’s oldest African American community newspaper, and Philadelphia Gay News, all ran the complete multipage supplement of the surgeon general’s report on AIDS. If you read a newspaper in the city, you saw the supplement in print. The community also partnered with local television stations. All three network affiliates and some independents started out every newscast of the day with the story, and they also made it a featured subject on their talk shows. Even Oprah’s schedule was changed in Philly that day. We lined up experts from the various AIDS organizations to be guests on radio shows throughout the day. The copy for ads was provided by a committee of the AIDS organizations headed by Jane Shull, cochair of the day. What I am most proud of is that all of this was done without a single dollar changing hands. Not one TV station, radio station, or newspaper asked for a dime. The print publications all donated the space and wrote news copy. The Inquirer printed an additional twenty thousand copies of the official AIDS report, which AIDS organizations in the city handed out on the streets.
Thanks to the efforts of the various HIV/AIDS organizations and the political clout of the LGBT community, we were able to keep the issue front and center in Philly up to the 1991 mayoral election. During that election cycle, an HIV/AIDS forum was held in which all the candidates had to present their views on treatment and city services.
One of the candidates running in the Democratic primary was my old friend, former District Attorney Ed Rendell. He and his campaign manager, David L. Cohen, decided that they needed to brush up on the issues before the forum. They came to my office to meet with various AIDS experts. What surprised me most was their ability to quickly memorize the treatments, drugs, and afflictions of HIV.
It was the first time that I got to experience up close the brilliance of David L. Cohen. He was someone who could not only strategize and organize, but he also showed genuine empathy for the people he was dealing with. He and I struck up a friendship almost immediately. David later went on to do great things at Comcast NBCUniversal, specifically around diversity inclusion, and became one of America’s top corporate leaders.
When Ed became mayor and David took on the role of chief of staff, David mentioned that Ed was not on good terms with one of the state’s leading Democrats, State Senator Vincent Fumo. David knew that I had a decent relationship with Vince and suggested that since I had asked the mayor to come sit at my table for the first ActionAIDS Dining Out for Life fundraising event, I should invite Vince too, in the hopes that they might develop a working relationship.
Vince was chairman of the Senate Appropriations Committee, which of course dealt with the budget of the state, and from that position over the years he literally brought billions of dollars back to Philadelphia. But beyond balancing the budget, I thought the mayor was going to need state dollars to be successful in helping to combat the AIDS epidemic and of course for other programs in Philadelphia in general.
With my somewhat shameless hosting style, I got them both to agree to sit together, explaining that it was the event’s head table and all the press would be there. Vince came with his wife and Ed came with one of his assistants who over the years had seemed to take on the role of jester, giving an audience to Ed’s adolescent humor. At dinner, all was going well; Ed and Vince seemed to be getting along. When Ed spilled a dessert covered with powdered sugar on his black suit pants, he jokingly leaned over to his assistant and asked him if he wanted some of it. I heard Vince’s voice in my ear: “I didn’t know he batted for your team.” At that point I had to explain to the senator that the mayor was heterosexual but felt liberated enough
to make such jokes. The dinner, powdered sugar and all, was a tremendous success, and Ed, Vince, and David developed a solid relationship, allowing for continued funding and support for HIV/AIDS among other issues. The three of them became a force for great change in a growing city, and are proof of how networking and collaboration, even in the face of a crisis, can benefit all parties.
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Despite the progress we were making, both medically and politically, all gay men were still suspected by some of being “carriers.” If you visited a person with AIDS in the hospital, you had to prepare for something out of a science-fiction novel. The yellow and red tape was everywhere, along with ominous warning signs. You were asked to wear hospital gowns and face masks. Sometimes, hospitals emptied an entire floor for one patient, and nobody would attend to them. Some patients were lucky enough to have friends visit them; some were not. I still hesitate to ask friends about people I’ve lost contact with from that time, afraid I’ll hear the dreaded line, “Oh, they died.” Or just get a telling nod of the head.
But from the trauma, the LGBT community learned an invaluable lesson. With little assistance from the government or medical community, friends and loved ones continued to die. When we saw our friends commit suicide rather than go through the daily horrors of being sick and stigmatized, this community learned how to react, fight back, and organize. ACT UP and those who preceded them are the real heroes. In Dallas, the hero wasn’t the glamorized heterosexual cowboy in Dallas Buyers Club, but Robert Moore, cofounder and former publisher of the Dallas Voice, who put a spotlight on the issue. Other heroes were the real-life doctors who put their practices on the line. Those few elected officials who found dollars in their tight budgets to house, feed, and care for people who were tossed aside by society—they are heroes. And yes, clubs allowing members’ collective buying power were heroes too, but not the Matthew McConaughey movie versions.