U.S. Leaders Forgot the Lessons of the AIDS Crisis by Not Doing the Reading
Literature’s power to illuminate otherness makes it critical to leadership.
Since the pandemic transformed U.S. life, there’s been no shortage of references to literature to understand the impact. But most of these, such as national security doyen Eliot Cohen’s Atlantic piece on Albert Camus and Edgar Allen Poe, stick to a very narrow canon. If national leaders are to communicate clearly with the wider public using literature to guide policy, there’s another more recent pandemic, one that another U.S. administration first ignored, then joked about. During the AIDS crisis, leaders muzzled public health experts, declined appropriations, and presided over the deaths of more U.S. citizens than killed during the Vietnam War.
From the policy failures of the Reagan and George H.W. Bush administrations to the ferocious and dedicated citizens who transformed the Centers for Disease Control and Prevention, the costs and consequences of the AIDS crisis still shape the world today. Many of the novels, plays, and films that might have been written about HIV/AIDS were interred with their authors. But some texts have endured, like Tony Kushner’s Angels in America: A Gay Fantasia on National Themes. The play’s notional protagonist, Prior Walter, is a victim of the bigotries embodied by the play’s antagonist, Roy Cohn, the real-life McCarthyite apparatchik, New York fixer, mentor of Donald Trump, and self-loathing closet case. As AIDS ravages his body, Cohn attempts to use his connections to gain access to the experimental drugs that could prolong his life: “I want my own private stash … I’d rather cheat … send me my pills with a get-well bouquet, pronto, or I’m gonna ring up CBS and sing Mike Wallace a song. You know the ballad of adorable Ollie North and his secret Contra slush fund.” Cohn is both cruel and corrupt as he supports conservative indifference to the public health crisis that destroys his body while seeking private aid himself. Currently, many politicians responsible for disinformation about COVID-19 who are set against providing aid to the public have prioritized their access to experimental treatment and their own financial remuneration.
The play ends with Walter’s monologue, implicitly rebuking Cohn: “This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come.”
People of color have been hit much harder by the pandemic than white people, just one of many glaring disparities baked into our political system. Policymaking without moral imagination ensures that when crises arrive, there will be little consideration for the vulnerable and the marginalized. Fiction continues to remind us what too many others forget.
An even more incisive text is one of the earliest novels about HIV/AIDS. Samuel Delany, the Black, gay science fiction author, was writing his metafictional fantasy epic, Return to Neveryon, when gay-related immune deficiency (GRID), the original name given to AIDS syndromes, was first diagnosed in 1981. In the third volume, 1985’s Flight from Neveryon, Delany wrote a novella, “The Tale of Plagues and Carnivals,” one of the first fictions to address the crisis at length. Delany interjects a parallel plot of the real-world horrors he’s living by alternating between contemporary New York and Neveryon. In New York, Delany tracks the growing number of HIV/AIDS cases. The horrors of the plague years alter Delany’s fantasy realm: He introduces a plague that is similar to HIV/AIDS as it was then understood.
As the plague spreads, the princess and her ministers decide not to solve the problem. They distract the masses with bread and circuses. This muddled and incompetent message is similar to the Reagan administration’s response, which literally laughed at the grief caused by mass death, pain, and suffering as HIV/AIDS became a far-reaching public health crisis. Then-President Ronald Reagan refused to confront the crisis until April 1987, when he first used the name of the disease in a major address. Even at the time, his callous indifference was sent up in an October 1987 episode of a popular sitcom: Designing Women’s “Killing All the Right People.”
The fate of Delany’s character Pheron is perhaps the most powerful illustration of a far-reaching public health crisis and an indifferent government. Pheron is a poor weaver afflicted by the plague. He becomes isolated and afraid and begs for help from his former friends: “No … No, please. I just wanted to talk. Let me stay, awhile. I’m so … I’m frightened, Nari. I want somebody to do something for me! But what can I ask them for?”
In response to the real-life plight of people like Pheron in New York, Gay Men’s Health Crisis, an AIDS service organization, was founded in 1982 to “end the AIDS epidemic and uplift the lives of all affected.” As the crisis continued and policymakers’ indifference persisted, LGBTQ+ individuals and their allies launched the famous, and famously confrontational, AIDS Coalition to Unleash Power (ACT UP) in 1987. Its efforts seemed like an answer to the ostracization of Pheron by his friends and policymakers: “a group of despised, gorgeous, terrified and terribly, terribly young people who looked death and society in the face and said ‘No, we will not go quietly into that good night. Save us or give us the means to save ourselves.’… It was an assertion of basic human dignity and that fierce will to live in the face of hatred and the neglect that was its vicious stepchild.”
protested the U.S. Food and Drug Administration and Gilead Sciences, more than 30 years from their first action against Burroughs Wellcome to get AZT, an antiviral drug used to treat AIDS, released. In conjunction with Housing Works, ACT UP released a mask, reading “If I die of COVID-19—forget burial. Drop my body on the steps of Mar-a-Lago,” connecting both pandemics. As early as March, the community connected its past with its present; in Dupont Circle in Washington, there were signs in windows that read “We survived AIDS; we’ll survive this.” It was as much a call to arms as a message of solidarity. Anger about the past has been a helpful concentrator of minds. “This pandemic seems destined to repeat the history of HIV in some ways as tragedy—and an avoidable tragedy at that,” wrote Kevin Jennings, a well-known LGBTQ+ rights activist and CEO of Lambda Legal. “But it will most likely not be tragic on the same scale, because this time, “normal” people are getting the virus, which shows us that one of the deadliest of all diseases—prejudice—continues to shape who lives and who dies in America.”Not all members of ACT UP survived to face the current pandemic. Those that have, those who have been influenced by that generation, have been vociferous in their advocacy for equity. As experimental treatments rolled out and were put out of ordinary U.S. citizens’ reach, ACT UP
Conventional scripts for policymakers and role understandings mean that they never hear, never care about, and are rarely incentivized to act on what happens to others. The suffering of LGBTQ+ individuals wasn’t the only time policymakers chose indifference. More than a century ago, during the 1918 Spanish Flu pandemic, this pattern was replicated in the treatment of Native American populations across the United States and particularly at Indian residential schools with “mortality rates four times higher than in the wider population.”
This time around, the coronavirus has ripped through native communities, as it has other people of color, with devastating results. The isolated and agonizing deaths of more than 490,000 U.S. citizens from COVID-19 stem from the same policy decisions—and even some of the same policymakers, including former Attorney General William Barr, who sought to turn Guantánamo Bay into a detention camp for HIV positive refugees in 1993 and who killed people like Pheron. If policymakers’ frames of reference were wider, more diverse, and more compassionate, to be sure, some of these losses could have been avoided. At its most utilitarian, a movement to improve reading lists, perhaps under the name “National Security Needs Diverse Books,” would improve the thinking not only of contemporary leaders and thinkers but develop the most important skill for an increasingly diverse society: cognitive empathy.