Photo by Ed Negron

Photo by Ed Negron

For the CEO of one of the largest health care and research organizations serving the LGBT community in Chicago David Munar’s office is pretty small. The building stands on the corner of N. Broadway and Clarendon in Chicago’s Lakeview neighborhood. On this rare warm day in the middle of May his windows are open and the sounds of car horns and children pour in. Slight, with dark eyes flashing from behind wire-framed glasses and hands that never quite stay still, Munar is relaxed as he recalls with ease the day he was diagnosed with HIV over 20 years ago.

“I was in a new relationship and I was shocked beyond belief. It was terrifying, it was lonely and in that era it was absolutely a death sentence,” he says. The year was 1994 and AIDS was the leading cause of death for all Americans ages 25 to 44. More than 250,000 people had already died. The next year marked the height of AIDS-related deaths in the country, with about 50,000 people dying from the illness. Effective drug therapy was two years away.

The year was 1994 and AIDS was the leading cause of death for all Americans ages 25 to 44.

“HIV is interesting. Part of the phenomenon is that untreated, most people with HIV will develop AIDS and die. But it’s not overnight,” Munar says, president and CEO of Howard Brown. “You’re walking around feeling depressed and that the worst is around the corner but you don’t know when it’s going to happen or how quickly. You’re kind of anticipating these things happening but they’re not actually happening in the moment so I was not dying but I was terrified that I would die before 35.”

June 5, 2016 marked the 35th anniversary of a CDC report describing cases of a rare lung infection in five young, previously healthy, gay men—the first documented instances of a disease that would be known as AIDS.  Nearly four decades later it remains a politically charged illness, despite its waning interest in mass media. The crisis that followed those first five diagnoses catapulted the gay community into a national spotlight and it seems unlikely that the disease will ever be distinguished from the history of groups like ACT-UP or phrases like the “gay plague.”

But what does that activism, that history mean when it’s only documented in textbooks as a sidebar to the Reagan administration when a new generation has only a passing knowledge of the death and sacrifice that paved the way for them, when the best-selling book on AIDS ends its anthology in 1985?

In 2011, the Henry J. Kaiser Family Foundation (KFF) released a national survey—their eighth on the subject since 1995—designed to better understand the evolution of public opinion toward HIV/AIDS. According to the results, the number of Americans who reported seeing, hearing or reading about the epidemic in the past year declined from 70 percent in 2004 to 40 percent in 2011. Six in ten Americans say most of what they know about HIV/AIDS comes from the media, even though coverage of the epidemic has steadily declined since 1987—continuing even as the cumulative number of AIDS cases in the U.S. rose above 500,000. By 2008, the PEW Research Center found that only 2.2 percent of all health news coverage was on HIV/AIDS.

‘You didn’t watch your friends die’

David Munar at the 2011 AIDS Walk & Run / Photo by Ed Negron

David Munar at the 2011 AIDS Walk & Run / Photo by Ed Negron

At the time of his diagnosis, Munar was working at the AIDS Foundation of Chicago. He already had a history of organizing around queer issues before graduating from Northwestern University in 1991. He and other campus activists, for example, worked to press the university into enforcing a newly-amended non-discrimination protection extended to sexual orientation. “We were trying to test that policy by demanding that the University not allow Army recruitment on campus because at the time the army did not allow gay and lesbian people to serve openly,” he says.

His group of campus activists didn’t win that particular fight but that experience refined a brand of community-based organizing that he wanted to continue after graduation.  By the end of the year he would be working at AFC, after a friend from Northwestern encouraged him to apply. Munar’s job involved connecting those severely ill with AIDS with homemaker services. Before the discovery and implementation of anti-retrovirals, the treatment model was centered largely on death and palliative care—helping patients treat their symptoms, ease their pain and die with dignity.

Munar says once people contacted AFC and talked to him or an associate about getting into the program, most lived an average of six to nine months. “Death was all around. We didn’t know what we were facing or how long the epidemic would last. Is it going to wipe out the whole planet? Or is it just going to wipe out gay people? Who’s really at risk? How do you protect yourself? All of those were very real uncertainties.”

Death was all around. We didn’t know what we were facing or how long the epidemic would last.

Tracy Baim, publisher and executive editor of Windy City Times, describes living through the AIDS crisis as coming of age—and coming out— in a war zone. By the time the death toll started to decline in 1996 thousands of people were gone. Munar’s cohort, who were still in high school or college at the beginning of the epidemic, were able to take advantage of successful drug treatment while watching people ten, twenty years older die in droves. “Survivors who are still around in those age groups have entire photo albums of people who are gone,” he says.

In an almost paradoxical turn, the survivors of that era contribute to its lack of visibility. It’s a phenomena often observed in survivors of trauma and a symptom of post-traumatic stress disorder—to cope with the fact they essentially lived through what felt like a holocaust, witnessing countless friends and lovers die while their government stood idly by, some survivors never talk about it. “There’s a lot of the trauma in the gay male community,” says Baim. “All your peers, all your friends, everyone in your Roladex is gone. Many of them are not able to tell the stories, it’s just too traumatic.”

According to KFF results, from 1987 to 2011 the number of Americans who named HIV/AIDS as the most urgent health problem facing the country declined from two-thirds of those surveyed to seven percent. In 1995, just over half of parents reported being “very concerned” about a child becoming infected, but over the course of the next decade this concern decreased to about a third of parents, a number that has stayed steady from 2005 to 2011 (Black Americans are three times more likely to express that level of concern than white parents.)

“I think your generation, you didn’t watch your friends die and so it’s not as real to you,” says Geri Donenberg, associate dean of research in the school of public health at the University of Illinois in Chicago. She directs the Community Outreach Intervention Projects, a program that utilizes an indigenous leader model to gain access to marginalized communities affected by HIV. The model trains people from the community—former intravenous drug users, people who are HIV positive—to perform outreach. “It’s not as real to you and now we have anti-retroviral and people can live really long healthy happy lives as long as they take their medication. I think there’s a sense that it’s not such a dangerous disease anymore.”

I think your generation, you didn’t watch your friends die and so it’s not as real to you.

Donenberg was working on her PhD at UCLA at the height of the HIV/AIDS crisis. She watched her brother’s two best friends die from the disease. “It was on my mind that it was a very political disease,” she says. “It felt like it had a lot of components and affected marginalized groups and that weren’t necessarily going to be attended to and that became a great interest to me.”

By the time Munar started working at the AFC in 1991, the momentum that sustained groups like ACT-UP had started to die down. He and Baim both attribute the decline to two factors: the inevitable burn-out of activists who were surrounded by and organized based on death and a schism in the ranks. “Part of the movement really wanted to press the medical and clinical trial sides of the work, making sure that we were continuing to press for better therapeutics to treat people with AIDS or prevent HIV,” he explains. “Then another camp that wanted to do that but also look at socioeconomic barriers and other -isms that led to the epidemic. There were people who said if we neglect some of these -ism issues we do so at risk of allowing the epidemic to flourish in marginalized issues and that’s exactly what happened.”

AFC tries not to repeat the same mistakes, enforcing a policy of meeting people where they are, not pressuring people into a one-size-fits-all HIV prevention course. Munar points to outreach efforts like Howard Brown’s Broadway Youth Center, a drop-in shelter for homeless queer youth in Chicago’s Lakeview neighborhood as an example of that policy. Around 1,500 people between the ages of 13 and 24 cycle in and out of the center. “They’re not going to hear the HIV message when they [come] to us because they’re desperately tired, stressed and hungry. So that’s where we have to meet them,” he says. “It’s slow difficult work but it’s also rewarding work—making that connection between food and housing and employment and legal supports. Community building is what’s going to save communities from HIV.”

The schism that ended ACT-UP and that AFC works to address is one that not only allowed HIV to flourish in marginalized communities and the black community in particular but also produces a historical narrative that paints these communities as passive victims of the AIDS epidemic.

Photo by FightHIVinDC / Flickr Creative Commons

Photo by FightHIVinDC / Flickr Creative Commons

On the edges of marginalization

In 2014, African Americans accounted for almost half of new infections (44 percent), although they make up only 12 percent of the population. By the end of 2011, over 250,000 Black Americans had died from AIDS. The numbers tell a story of disproportionate devastation.

In 2014, African Americans accounted for almost half of new infections (44 percent), although they make up only 12 percent of the population. By the end of 2011, over 250,000 Black Americans had died from AIDS.

“There were articles and research showing that [African-Americans] were the group highest at risk and highest impacted by HIV from the 1980s,” says Maya Green, the director and founder of HIVRealTalk, a community-based HIV screening and prevention project in high-risk communities in south side Chicago. In 1985 Black Americans accounted for around a quarter of AIDS diagnoses among adults and adolescents, about double their share of the total population. “But if I asked you what you thought AIDS was in the 1980s, most likely you would tell me it was gay white men.”

So why are Black Americans often called the second wave of the epidemic, when there has been clear documentation that they have always been impacted? According to Baim, a lot of it has to do with both the fact that prominent Black AIDS activists were re-closeted by their families upon their deaths and the state of early AIDS coverage. She says neither mainstream media nor a lot of gay press made an effort to dispel the myths surrounding the crisis. “I don’t blame any part of the community for seeing this as a white gay disease—almost everyone was saying it. All the journalists were covering it that way, including the gay press so people weren’t seeing the images of people like them being affected by this.”

That coverage cost lives. According to Daniel Royles, a visiting professor of history at Florida International University, that lack of outreach to Black communities wasn’t remedied until the mid-1980s, when groups like Blacks Educating Blacks about Sexual Health Issues (BABASHI), Gay Men of African Descent and the Third World AIDS Advisory Taskforce started to take matters into their own hands. These names aren’t as familiar as ACT-UP or the AIDS Foundation, their history relegated to the margins of a little-told narrative. When the history of AIDS activism does make its way into the mainstream, it’s a whitewashed version (see: The Normal Heart) and if Black AIDS activism gets any mention, it’s a juxtaposition to the homophobia of the Black church.

When the history of AIDS activism does make its way into the mainstream, it’s a whitewashed version.

Royles is working on an oral history project that documents the history of grassroots AIDS activism in the Black community, attempting to fill a gap in the narrative. “The first interview that I did for this project was with Rashida Hassan from Philadelphia [the founder of BABASHI] and she said to me if you look at the history that’s been written you’d think we’d just let this epidemic steamroll over our community and that’s not true.”

David Munar acknowledges that despite the fact that millennials have never lived in world without AIDS (and that they’ve grown up in a period where they’ve been assured that the epidemic of HIV was over) they have little context for understanding the disease, its history in America, or for protecting themselves and their friends from HIV. “I think it’s important for us not to blame young people for the education that they’ve not received.” He has gray in his hair now, a gift that he couldn’t have foreseen the day of his diagnosis. “The history of AIDS is not about history. It’s about how are we prepared to meet our challenges as a society.

Rachel Hampton is a senior at the Medill School of Journalism at Northwestern University. She’s currently serving as editorial intern at Northwestern magazine and spectrum co-editor at the Daily Northwestern.

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