OTwo years on from a global pandemic that has killed more than 6 million people, infected over 500 million others and irrevocably changed the way we all live, work and interact, while some mourn and others constantly readjust, for others an investigation is continuing.
how did we get here What mistakes were made? And what can we learn? For those who survived another global health crisis decades earlier, one with a far higher mortality rate but drastically lower visibility, many of these questions still remain. In the summer of 1981, a quiet, alarming new disease began to afflict gay men, first covered in local gay media but soon featured in the New York Times with the still rather unforgettable, chilling headline “Rare Cancer Seen in 41 Homosexuals.” was treated. That year, 234 people died in the United States. In 1982, the CDC used the term AIDS for the first time. By the end of the decade, over 100,000 Americans had died.
“I think fear was the overwhelming feeling,” journalist Leon Neyfakh told the Guardian after interviewing many who survived the era for the final season of his fiasco podcast. “Just knowing that you might have it, but you don’t know for sure and you might not know for months or years because there wasn’t a way to verify it for a long time while all your friends were dying at the same time.”
While there are many issues yet to be unraveled about how the US and many other countries have mistreated and continue to mishandle Covid-19, there has at least been some sense of it was is handled. But under Ronald Reagan’s administration, at a time when the majority of US states still maintained sodomy laws, dealing with a disease that primarily affected gay men and eventually drug users was not seen as a priority. “Anytime you talk about sex or drugs, it’s a moral issue, not a public health issue,” Bill Clinton’s former Surgeon General Joycelyn Elders says on the podcast.
Years later, Elders was one of many who still sounded the alarm (before being abruptly and cruelly fired after insisting on more open and honest forms of sex education), but back then it was left to gay men, and then their devoted allies, to militarize, after Seeking solutions that no one else was. They are the heroes of Season 5 of Audible’s Fiasco, a dense and often devastating podcast documentary dedicated to clarifying the everyday realities of a specific historical event. Previous seasons explored the 2000 Bush-Gore election and the struggle to desegregate Boston’s schools.
“I don’t think we’ve ever done a season of our show that had a message with a capital M,” Neyfakh said via Zoom, trying not to position the show as a form of public service. “We’re always more inclined to air out the complexities of these issues and let people express their point of view and explain where they’re coming from and let the audience take away what they want. We’re always trying to find the people who populate these stories, and we want to alienate them from the abstractions in which we usually encounter them.”
In the beginning and for far too long after, a diagnosis was essentially a death sentence (it wasn’t until 1985 before an official test was even available), and with little to no awareness of what it was and how it was transmitted, became gay Men forced into action even as their friends disappeared around them. Neyfakh called it “a dichotomy of fear and grief, but coupled with an irrepressible urge to survive and find a way out,” and it’s something we see in both those he speaks to and those who do are no longer here, but whose stories are shared. There was Michael Callen, a New York singer-turned-activist who worked with self-proclaimed “S&M hustler” Richard Berkowitz to raise awareness in the dangerously uninformed gay community. Callen was diagnosed in 1982 at age 27, but along with Berkowitz and with the directive help of physician-turned-HIV/AIDS researcher Joseph Sonnabend, he spent the next decade, before his death at age 38, with the Working on things that are extremely important There is unprecedented work like the basic manual How to Have Sex in an Epidemic.
But what Fiasco details is that trying to monitor gay men’s sex lives was an uphill battle, and for understandable, often oversimplified or harshly judged, reasons. “One thing I didn’t appreciate until we started working on it was the fact that that period followed an explosion in gay life,” Neyfakh said. “Gay liberation was in full swing in New York, San Francisco and LA when this began and there was a lot of resistance when Berkowitz and Callen started advocating for safer sex because it felt like turning back the clock, it wasn’t just about being told you had to end your party, for many it felt like being told that people needed to conform to mainstream society in ways that run counter to gay liberation.”
One of the most interesting and difficult episodes focuses on the San Francisco bathhouse war. Once seen as a liberating space for gay men to express their sexual freedom, the rise of HIV has quickly made them a potentially dangerous source of infection. While some, including many gay men, wanted them closed, others insisted they remain open, viewing their closure as a dangerous step towards the nationwide recriminalization of bestiality. For Neyfakh, “this debate about freedom versus public health obviously resonated” in the era of Covid, and also shed light on the complicated fissures that were opening within the gay community. “There was just a total knowledge vacuum, so it’s not surprising that people had theories that turned out to be wrong,” he said.
For many, the broad outlines of what the Reagan administration did, and more importantly, did not do, will not be particularly revealing, but the literal deadly apathy of the first couple and their staff remains shocking. Horrifying, recently unearthed audio plays from the very first time a journalist asked Reagan’s publicist about the virus, and is answered with a joke before bursting into laughter. It took four years and the death of actor Rock Hudson to shake them up when Reagan finally said AIDS for the first time in late 1985. At the same time, the far right seized the moment to continue to advance a homophobic agenda, led by televangelist Jerry Falwell’s The Moral Majority, which uses words like “punishment” and “sin” to further isolate an already isolated community.
“I think until I started working on the show, I didn’t quite realize how perfectly AIDS fits into the pre-existing prejudices that people have towards gays and lesbians,” Neyfakh said. “It just triggered every specific hateful prejudice that people had about these people who were seen as so separate from the mainstream world.”
What might be more revealing to some is an episode dealing with the so-called “hemophilia holocaust,” in which the blood industry’s failure to take action resulted in 10,000 hemophiles becoming infected through transfusions, more than half of them entire population in the US. “I think what perhaps shocked me more than the mere fact of the numbers was how bad the inertia in the blood industry was,” Neyfakh said. “Not changing the practices and refusing to accept that suddenly their product, be it donated blood or paid for plasma, was essentially deadly and there were people trying to warn them and people trying to make suggestions to make how the product could be made safer. It felt like a story about more than just hemophilia or blood donation, it felt like a story about how institutions and industries come together and resist change even in times of need.”
While great strides were made, particularly with regard to the life-saving “triple cocktail” of antiretroviral drugs (which was being developed through 1996), what’s most striking about the eight-episode season is how little has changed, so much. In 2020, around 680,000 people died from AIDS-related diseases worldwide. There is still no vaccine against HIV. Needle exchange programs are still effective but are being disparaged. Sexual health and sex education are still treated as moral issues. Communities of color are still overwhelmingly more vulnerable. Anti-LGBTQ+ legislation is on the rise. If something like HIV struck again, would it be any different?
“I think there is little reason to be optimistic,” said Neyfakh. “How easy it is for people, if they don’t have it in front of them, to just not think about it. I think that, coupled with the homophobia it sparked, explains a lot why there has been so little public urgency about this disease, and I think that would happen now if you can put something out of your sight, it’s very easy , not to care.