In 1983 Richard Berkowitz and Michael Callen, two gay men in their twenties, published a manual called How to Have Sex in an Epidemic: One Approach, under the guidance of Dr. Joseph Sonnabend. At this early point in the AIDS epidemic, it was unclear exactly how the disease spread—whether from a single agent or a confluence of multiple factors. Because the disease hit already-maligned groups like gay men and drug users the hardest, there wasn’t a widespread rush among medical or public health professionals to find the cause or a cure.
Sentiment among many people in the United States ranged from prejudice to rage to fear. Widespread calls to quarantine people living with AIDS first came from the evangelical right but eventually seemed like a commonsense response to some lawyers, physicians, politicians, and ordinary people, as I detail in my new book, The Borders of AIDS: Race, Quarantine, and Resistance. Gay men like Berkowitz and Callen found themselves in a situation where they alone would be tasked with helping their communities figure out how to relate to one another within the confines of this new and deadly epidemic. Although Berkowitz and Callen got some things wrong, they also got some things right. Perhaps most important, their manual was the first to recommend the use of condoms to men who had sex with other men.
As in the early years of the AIDS pandemic, the past eighteen months living with the COVID-19 pandemic have left people trying to figure out how to safely relate to others. And also like the early years of AIDS, a mix of misinformation and conflicting and constantly changing information has made navigating the social realm feel confusing and risky for many. For those who took pandemic precautions seriously and are now fully vaccinated, having the permission—at least from the CDC—to move about virtually mask-free feels strange.
Over the past several weeks, dozens if not hundreds of reports and advice columns have been published suggesting healthy ways to reenter our communities and how to reduce anxiety when heading back into the world. Such suggestions have become all the more vexing as recent reports cite preliminary research indicating that those who are immunosuppressed, including people with HIV/AIDS, cancer, organ transplants, and autoimmune diseases may not be protected by any of the existing vaccines. As one of my friends with lupus, a chronic autoimmune illness largely impacting women and especially women of color, put it, first they hoarded our hydroxychloroquine, and now the vaccines won’t protect us.
Although AIDS analogies have proliferated during the COVID-19 pandemic, at the fortieth anniversary of the medical and public recognition of AIDS, the most important lessons to learn from those early years of the AIDS pandemic in the United States have to do with how people who were most at risk and who were sick chose to protect and care for themselves and each other. In June 1983, when scientists had still not identified the cause of AIDS, a group of a dozen gay men living with AIDS at the Fifth Annual Gay and Lesbian Health Conference formed a People with AIDS advisory committee and wrote a manifesto known as “The Denver Principles.” The principles include recommendations for health professionals, all people, and people living with AIDS, and they insisted upon the rights of people living with AIDS. Several years before the formation of the famed group ACT UP—the AIDS Coalition to Unleash Power—the authors of the principles insisted that people living with AIDS take the following actions:
“1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda, and to plan their own strategies.
2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
4. Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.”
Although the context differs significantly, those who are most at risk for suffering the consequences of a widespread reopening amid the still-ongoing COVID-19 pandemic would be well served taking a cue from these early AIDS activists. Moreover, in the present day, we have the benefit of decades of organizing by disability justice advocates who insist on putting those most impacted in leadership roles in decision-making, as well as demanding principles such as intersectionality, a critique of capitalism, and cross-movement organizing. Reentering society and being “open for business” are not experienced in the same way by all of us, as some of us will experience severe consequences. Listening to the most impacted people may seem an inconvenience to some, but failing to do so will likely have dire results for many.
Karma R. Chávez is associate professor at the University of Texas at Austin and author of Queer Migration Politics: Activist Rhetoric and Coalitional Possibilities. Her latest book, The Borders of AIDS: Race, Quarantine, and Resistance, is available now.