Veterans Of The AIDS Epidemic In Kansas City Have Advice For Coping During COVID-19
For gay men in Kansas City who lived through the AIDS epidemic of the 1980s, the threat of COVID-19 is eerily familiar. That comes with anxiety and grief, as well as powerful lessons and perspective.
"It was like losing your entire family in one fell swoop," says Jon Barnett, whose AIDS activism here made him the public face of a largely invisible struggle for the resources needed to stop the disease from spreading, and to help those who already had it.
"I have an idea of what others are going to experience," says Barnett, referring to the probability that community spread of the novel coronavirus has yet to peak in Kansas or Missouri. "I've worked through that, I'll be able to do it again," he says. "But I'm not looking forward to it."
For Barnett, checking the number of new coronavirus cases every day is a visceral reminder of the year when AIDS became a reality in the United States.
"In '81," he recalls, "it was a weekly thing and it came out in the newspaper, the CDC morbidity and mortality weekly report. We watched those numbers climb so fast."
Barnett is bracing himself for what comes next.
"When's the first neighbor I'm going to hear about who's sick or died? When's the first family member going to send out the message that they've been infected with it, they're in the hospital? That's the anticipatory thing. I know what's coming," he says.
Stuart Hinds is an archivist at UMKC's Miller Nichols Library, where he heads up the Gay and Lesbian Archives of Mid-America, or GLAMA, and he, too, is reminded of AIDS in the 1980s.
"Forty years ago, it was a small segment of the population that it was clearly affecting the most, it was affecting gay men primarily." As a result, he says, people in power tended to not care. "Quite honestly, it was the fags, so nobody cared, you know? And that affected the way that the response was managed, if existed at all."
It took years, not weeks, for testing to become available. During that time, Barnett endured so much grief that he stopped going to funerals.
"You just had to keep going," Hinds says.
Both Hinds and Barnett have advice for getting through the uncertainty, anger and loss inflicted by COVID-19.
"Get your ass in the trenches and find ways to meet the need."
President Ronald Reagan didn't say the word AIDS in a public address until 1983. In the absence of a coordinated government response to the public health crisis, both Hinds and Barnett point out that help for the gay community came primarily from within the gay and lesbian community.
For Barnett, the lesson is, you can't wait for an official response.
"You have to get your ass in the trenches and find ways to meet the need," he says.
One of the memorable ways people did that in the 1980s was through fund-raising, by the community, for the community. Hinds remembers a Kansas City drag troupe called the Trollops that formed specifically to put on shows to generate money for local AIDS service organizations.
"That's all they did," Hinds says. "I don't know that they ever kept a tally of how much money they raised, but, they lasted for about six or seven years and it was a minimum of two or three shows a week."
The organizations the Trollops' shows funded were just as grassroots. Long before the Good Samaritan Project grew into the nonprofit it is today, it was a volunteer organization geared toward palliative care, because that's all anyone could provide in the days before HIV was treatable.
Neither the healthcare establishment nor families of victims could be counted on to offer compassion and care.
"There are stories of healthcare workers who wouldn't take trays of food in to patients who were sick, and would leave them at the door and force the person who was hooked up to everything to come and get their tray of food," Hinds recalls, "boys who were spurned by their parents and families who wouldn't even accept their bodies after they had died."
Volunteers filled that need. They also created a buddy system, pairing able-bodied volunteers with ailing community members. Volunteers would go on pharmacy runs and bring food to people, checking in on them regularly to be sure they weren't alone in their suffering.
Create rituals for connection, and keeping tabs on the wellbeing of others
When Stuart Hinds went to the same Kansas City gay bar every week in the 1980s, he did that for several reasons. He was in his twenties, and that's what twenty-somethings do. He was also grappling with a lack of access to reliable information on AIDS symptomology before testing was available.
Because the disease and its devastation were concentrated in the gay community, they weren't covered as mainstream news, except, Hinds says, "to stoke fear." The best information he could find was in what he calls "a bar rag," known as The Alternate News, distributed to gay and lesbian bars. So going out every week was crucial for staying informed.
But the other reason is something Hinds only understands in retrospect.
"You'd see the same faces week after week, right? And you took solace in the fact that, 'Oh, that person's here, so that person hasn't gotten sick and hasn't died.'"
Being able to check in without inquiring about one person at a time was important. It would have been too overwhelming otherwise.
Jon Barnett is still looking for a way to accomplish the same thing with COVID-19, given the realities of social distancing. Barnett is HIV positive, diagnosed in 1998, and because he's immunocompromised, he's not leaving the house. But he has been playing the harmonica from the back deck in an attempt to create that same kind of ritual. Based on the body language of his neighbors as they pass by, he's not sure that's working.
"Nobody knows how to behave," he says. "We're all kind of in this new place and it's like, what's the etiquette?"
But he says we have to figure it out fast, so we can support each other.
Stay informed, even if it's tiring
A climate of fear, with scientific research unfolding quickly, is fertile ground for misinformation, making it easy to become skeptical of everything you read or hear, says Jon Barnett. The answer, he says, is diligence.
As much as Barnett relies on science and trusts what science ultimately tells us, he also urges caution.
"You can't just accept what you're told," he says, remembering disappointments, over-promising and outright profiteering.
When he thinks of "how many hours and days and years of my life I've spent trying to find answers to these questions," he says, he worries that people will run out of patience, favoring the easier answers provided by less reliable sources.
Remember this isn't forever
Stuart Hinds takes comfort in the way things eventually changed with AIDS. People can now manage the disease in a way that once seemed impossible. He anticipates the same will be true with COVID-19.
"It will evolve," Hinds says. "There will come a time when we are able to get out of our houses and engage with each other again."
In the meantime, he says, it's important "as hard as it is, not to let fear overtake you," and to give people space to react in a variety of ways to the toll this experience is taking. He remembers a period of in-fighting within the gay community as people entered a second phase of coping with AIDS, and hopes we can avoid that with COVID-19.
"Compassion for each other," he says, "and giving others room to feel what they're going to feel, is critical."
Gina Kaufmann is the host of KCUR's Central Standard. She can be reached on Twitter, @GinaKCUR.