On living through the history of AIDS, and seeing a rising rate of infection
AIDS didn't hit Austin until several years after the destruction had already begun in California and New York. Like most trends, the virus took a little longer to travel inward from the coasts. It was 1983 when the first case of HIV was diagnosed in Austin – two years after the Centers for Disease Control and Prevention began reporting on GRID (Gay-Related Immune Disorder)-related illnesses, and one year after GRID was replaced with AIDS. In 1983 alone, over 2,300 people died nationally from the disease.
The death toll is often the first thing that comes to mind when discussing the origins of the AIDS epidemic – approximately 40,000 people died of AIDS-related complications between 1981 and 1989. By many, it's been described as a holocaust with the virus wiping out a large portion of a generation of gay men (though AIDS does not discriminate by sexuality, race, or gender, and today is all too frequent in both black and Latino communities).
Rarely, however, do we talk about those who lived through it – those who contracted the disease and those who have remained HIV negative. Living within Austin city limits are dozens of people who were infected in the epidemic's early – and most lethal – years. Several decades later, those who were given a 10-year death sentence have defied the odds by living lives that have been rerouted, but not annihilated, by the AIDS virus. Today, they stand witness to the early days of the virus, survived a nightmare, and are once again seeing its return. Though many have chosen to leave the past in the past, several queer community members stepped forward to share their stories.
Dale Thiele, 60, doesn't consider himself a survivor. "It's a harsh word," says the longtime Austin resident. "I lived through the history of AIDS. I'm not a survivor. I lost a huge part of myself that I'll never get back .... The people who aren't with us anymore – they're the ones that suffered."
Originally from Oklahoma City, Dale actually wasn't diagnosed with AIDS until 2008. While visiting his sister for Thanksgiving he began feeling so sick that he decided to go to the hospital. Upon intake, however, he passed out and woke up two days later in quarantine.
"It was the nightmare of the Eighties all over again. Everyone was wearing protective gear, and no one would tell me what was going on." Finally, a doctor confirmed that Dale had full-blown AIDS. "It was a relief to get the diagnosis. I'd spent years asking myself, 'Why am I still here and why did all my friends go?'"
But what does it mean to survive? For Dale, the connotations are negative – a reminder of a plague that decimated his generation. During the epidemic's early days, Dale lost 35 friends to AIDS in just two years.
Yet, "survivor" isn't a loaded word for everyone who lived through the Eighties. In Brown Sugar's opinion, "survivor" holds a more positive association. "I decided I'm going to do this for everyone who isn't strong enough," explains Brown Sugar. "You've gotta live your life normal, because you only get to live once so live it up."
A former sex worker from Longview, Texas, Brown Sugar (who's comfortable using both gender pronouns) was diagnosed HIV positive in 1994 while serving a 22-year prison sentence for taking one of her clients' VCR when he refused to pay for her services. "After I found out [I was positive] I was like, 'Are you serious?' It was a hard bullet to bite," remembers Brown Sugar. "I told the lover I was with and asked him to please go get checked. He didn't want to – he was like, 'If I do have it, I don't want to know.'"
After a few weeks of mourning, Brown Sugar, now 58 and a North Austin resident, refused to let the virus win. "At first I wondered who gave it to me, but I was a working girl – any of those johns could've."
Chris Eddleman, a former military kid who calls Austin home, was also in prison (for drug-related charges) when he learned that he had AIDS. During his intake in 1987 he was asked if he wanted to be tested. Several weeks later he was called into the doctor's office. "In prison you have to stand in line to see the doctor," Chris recalls. "Finally they called me into the office, and then we just waited – five minutes of silence – then he blurted it out. He told me, 'Well, you have this disease and they don't have a cure and you're going to die in 10 years.' I was sent back to my cell and it hit me. I started crying and wrote my mom."
AIDS was something he'd only heard about on the news, and no one at the prison told him anything more. His cellmate was removed and he was kept isolated out of fear he was contagious. Chris was just 22 when he was diagnosed and had only been sexually active for about a year. Even now he isn't sure if he contracted the virus from having sex or shooting up. Chris is now 51 years old and currently living in a tent near Mobile Loaves & Fishes' Community First! Village. He works several days a week at the community and hopes to be placed in one of their housing units soon.
Richard Bates, 71, is not HIV positive. He has, however, worked with people living with AIDS (PLWA) ever since the outbreak. A United Methodist minister and native Texan, Richard moved to Austin in 1984 after living in San Francisco for half a decade. Three years later Richard started an HIV positive support group with Waterloo Counseling, until he took a job with the city of Austin, where he worked for the next 20 years. "Early on, people didn't know what to do and what choices to make," he explains. "There was a lack of information and resources."
Still in Richard's possession is a list of 77 names – each one a friend, support group member, or friend's partner – whose life was cut tragically short from AIDS. At one point, he was officiating over funerals weekly. "It was hard when it really snowballed, but you get through it. You have to learn to celebrate the life."
Despite the growing death toll, politicians and public figures in the Eighties, including President Reagan, ignored the health crisis, and even treated AIDS as a joke. In 1984 during the Republican National Convention, the then-president of American Airlines suggested that "gay" was in fact an acronym for "got AIDS yet?" As the president's and first lady's friend Rock Hudson was slowly dying in a French hospital, Nancy Reagan ignored his plea for help. "AIDS is the wrath of God upon homosexuals," Rev. Jerry Falwell, one of Reagan's biggest supporters, declared during the early days of the epidemic. Locally, the Texas commissioner of health proposed a bill to quarantine all gay men who were "suspected of having AIDS."
Meanwhile, mainstream, straight white communities were led to believe that AIDS wouldn't affect their lives. "Heterosexual folks were being told that HIV posed little risk to them," says Sylvia Lopez, an AIDS Services of Austin (ASA) employee of 27 years.
But, for gay men, contracting the virus seemed inevitable. Those who were positive "knew they were facing a death sentence," says Lopez. "Once that HIV testing became available, I heard many question whether there was any point to knowing their status. Here in Austin both fear and anxiety in the gay community were prevalent. The community rallied to help their own," because there was little other help. Despite the CDC's request for additional funds for AIDS research, Reagan and his administration refused it.
ASA began in 1984 as the Austin AIDS Project – a program of Waterloo Counseling founded by Waterloo's executive director, Paul Clover. After hearing horror stories from the East and West coasts, several Austin community members came together to develop an education campaign just as HIV became a reality in Travis County. Representatives from San Francisco's Shanti Project trained AAP staff on how to work with clients who'd been told they were dying. "The only thing that could be done at first was to help people die," says Paul Scott, the current executive director of ASA. Three years later, with the help of later-state Rep. Glen Maxey, AAP became ASA and separated from Waterloo Counseling to meet the growing needs of Austinites whose lives had been impacted by the virus.
In the early Eighties, the average lifespan for someone living with AIDS was just 11 months, according to Scott. "Case managers at ASA were seeing three to five clients die each week as a result of AIDS complications." Many of these people were alone – shunned by their families, fired from their jobs, and kicked out of their homes.
"This is where a large segment of the LGBT community stepped in to fill the void left by support networks to not only support people when they died, but also to provide grassroots treatment therapy to offer relief and comfort for people with little hope at that time," says Scott.
Dale, who was disowned by the majority of his birth family for being gay, is all too familiar with this void. It's partially why the loss of his friends took such a toll on him. "It was one after another. We'd go to the ward to visit friends every day, and we'd see new friends in there. We'd go back the next day and some of them would be gone. They had passed overnight."
One memory that still rings clear for Dale was the staff telling him and his friends to wear protective gear before interacting with those who were sick. They refused. "What was the point?" he asks. "We were all going to die from it eventually."
But he didn't die. He wouldn't even get sick for another two decades. Instead, in an attempt at self-preservation, Dale withdrew from the world. For more than a decade he followed his routine: Get up, go to work, come home, and then do it all over again the next day. "When you don't have family, they are your family and you can't replace them," Dale explains. "Sure, you get new friends, but these were the people who made Austin home for me."
History tends to gloss over the story of AIDS in the Nineties, as if the virus was neatly cleaned up and put away by New Year's Eve 1989, but statistically the first part of the decade was equally horrific in terms of infection rates and fatalities. Between 18,000 and 23,000 people died each year from 1990 to 1992. With nearly 200,000 people already dead from the virus by 1992, AIDS had become the number one cause of death for 25- to 44-year-old men in the U.S.
For Chris, AIDS didn't really become visible until then. He started bartending on Fourth Street and helped open Oilcan Harry's in January 1990. It was there he recalls seeing customers "withering away" at the bar. "One time they'd come in and be healthy. The next time ... you'd see them suffering from dementia, thrush."
However, because Chris still wasn't entirely out, he believes this affected his view of Austin's epidemic. "I don't have the story of knowing hundreds and hundreds of people dying. I saw it every once in a while."
Richard, on the other hand, saw it daily and remembers the first few years of the new decade as the worst. "Early on, the lifespan [of PLWA] was short. Then it was a year. Then it was two years." It wasn't until 1994 that Richard recalls noticing a decrease in the funerals he and his partner attended.
He admits that for a time he suffered from survivor's guilt, but today he's found another angle to look at the past. "Illness happens. People get sick, and you have to deal with it and move on, because what else can you do? Death is a part of life and sometimes it goes out of sequence, but you can't stop living."
From the Eighties tragedy came one positive outcome: Though the LGBTQ rights movement officially began after the Stonewall Riots in 1969, AIDS became an organizing principle for the movement.
"AIDS taught us how to take control of our destiny," says Gary Cooper, 70, a fifth-generation Texan and an Austin resident since 1994. "It gave us the ability to build the Human Rights Campaign and Equality Texas. We learned – out of necessity – how to fight for our rights faster."
It wasn't until 1987 that President Reagan even mentioned the epidemic publicly. That same year, ACT UP (AIDS Coalition to Unleash Power), a grassroots, direct action advocacy group, formed to counter the government's silence. Though there was some funding, the federal government's response remained minimal until the passage of the Ryan White Care Act in 1990. This was the first comprehensive AIDS funding in the U.S., and is still the largest federally funded HIV/AIDS program in the country.
Gary moved to New York just two weeks before the riots began at Stonewall Inn, the now-historic gay bar in Greenwich Village. Today, he credits the palpable excitement from Stonewall with his political awakening. GRID appeared on his horizon 15 years later. "There was this collective, Oh shit," says Gary. "We started losing all our friends, and we spent a lot of time taking care of them. People were thrown out of their jobs, out of housing, and there was a lot of ignorance from the medical establishment."
In early 1985, amidst the growing health concerns, Gary decided to act on a four-year friendship with his now-partner, Richard Hartgrove. The pair – who lived in different cities at the time – relocated together to their home state of Texas. Shortly after their move, and only a few months into their romantic relationship, Gary and his partner decided to get tested. Gary was positive, Hartgrove negative. Believing that he only had a few months to years left, Gary told his boyfriend to leave him, but Hartgrove chose commitment. Today, the pair call a house in the hills of West Austin home, and Gary attributes some of his success healthwise to Hartgrove. "I wasn't affected the same way because I was in a relationship. I wasn't hit by circumstances like poverty."
Between '85 and '94, the pair moved several times following Hartgrove's job transfers while Gary helped start both Arkansas AIDS Foundation, the state's first AIDS response, and the St. Louis Effort for AIDS (EFA). "None of us really knew what we were doing," remembers Gary. "EFA was literally operating out of a shoe box. For most of us this was our first time really organizing. Internally, it was a battle – cannibalistic even. We were attacking each other over every issue."
But as the epidemic snowballed and spread more visibly into other communities, Gary and the other EFA board members realized they needed more help. Eventually EFA negotiated with United Way to become an affiliate agency in order to obtain much-needed funding. However, not everyone in the gay community considered the merger a win. In fact, Gary recalls ACT UP picketing the St. Louis Effort over the partnership. "According to ACT UP, we had given everything over to the 'straights,' including our power. They said we'd lost control of our destiny."
Despite the government's heel-dragging, and the grassroots infighting, efforts did pay off. By the mid-Nineties, AIDS cocktails, or antiviral therapy, had become efficient in stopping HIV from progressing into full-blown AIDS. According to CDC data, the number of new AIDS cases and deaths "declined dramatically and then stabilized in the U.S." The three years between '95 and '98 saw a 63% decline in AIDS casualties. Nineties youth grew up learning about HIV, and the importance of safer sex was taught in the majority of sexual education classes, the combination of which led to lower infection rates and a new way of looking at HIV. For many younger millennials, HIV is not seen as a death sentence, but as a livable disease.
As of 2013 there were 4,798 people living in Austin who've been diagnosed with HIV. In 2014, the city saw 297 new (known) cases. According to a study released by AIDSVu (a joint project of Emory University's Rollins School of Public Health and Gilead Sciences Inc., the makers of popular HIV medication and preventative Truvada), Texas is one of 10 states with the highest rates of new infections. Though many would argue that the AIDS epidemic never really ended, the CDC, public health officials, and AIDS-related organizations are in agreement on one fact: Numbers are once again escalating.
"I honestly believe that the mindset here isn't concerned with 'barriers' to their experiences. They want to live on the edge and deal with the consequences as they come," says Jeremy Teal, the event specialist at the Q, a branch of ASA that focuses on the health and lives of young LGBTQ men. "Austin has a giant influx of people coming from elsewhere, and with them they bring the issues from their previous home-places."
Complacency seems to be an overarching issue. Because AIDS isn't a "killer" anymore, it carries less fear for those who weren't alive to witness the plague and were too young to see its direct aftermath. Additionally, condoms have gone out of favor for some. In 2013, 72% of Austinites diagnosed with HIV contracted the virus from "male-to-male sexual contact," while 49% were infected from "heterosexual contact."
"New diagnoses have grown among young people, especially young gay men of color." Patrick Sullivan, Ph.D., Professor of Epidemiology at Emory stated in the AIDSVu study's release. In Austin between 2010 and 2014, 19% of people with new HIV diagnoses were black and 37% were Hispanic/Latino.
Each "survivor" mentioned their disbelief on the current rate of infections here in Austin. "I try to grab condoms and hand them out now to kids. I just want to help as many people as I can," says Brown Sugar. "Some won't even take the rubbers I try to distribute to them."
"Austin is a young, sexual city," says Richard, contemplating the epidemic's rise.
"I never thought we were going to come back to this," adds Gary. In an attempt to give back, Gary continues to work within Austin's LGBTQ community and has been on the boards of both Out Youth and ASA.
For each of these survivors, staying involved in the community has been a conscious decision that's crucial to their well-being. "I'm glad to be here, to be alive to give back to the next generation," says Chris. He frequently attends events at the Q, and has also started a coffee group for PLWA. "The doctor told me 10 years, and those 10 years I kept thinking I was going to die. It affected my earning potential .... It affected my relationships. When I think about all those years ... it's been all-encompassing."
Courage is how Gary describes surviving a holocaust. "We learned how to deal with the impossible. All the best guys died. But it created this sense of gratitude that I'm alive." Yet it's death that separates him from those who weren't in the early AIDS trenches. "When someone I know dies – I see this out of control grief from other people, and I think, 'I've buried 300 people.' When you choose to go on living you don't dwell. You have to compartmentalize or you go crazy."