For queer people over the age of thirty, a specter haunts the COVID-19 pandemic. A disease that threatens all of our loved ones and upends our world? Since the early 1980s, we have been living through it with HIV/AIDS. Indeed, although HIV is now treatable—even preventable—for those who can afford the drugs, it remains a pandemic, with close to 38 million people living with the virus today.
How can we operationalize a concept of public health to shine a light in the darkness?
Early in the spread of COVID-19, commentators made frequent comparisons to the 1918 influenza pandemic which infected 27 percent of the world and killed 50–100 million people. But as it has become clear that this a very different epidemic, a veritable cottage industry has sprung up of articles comparing COVID-19 with HIV/AIDS. Some, like Mark Schoofs’s article, have focused largely on the emotional resonances. Most have taken the form of lists of valuable lessons that can be transposed from the HIV/AIDS crisis to our present circumstance.
While there are many cultural and political parallels between HIV/AIDS and COVID-19, there is probably less to learn from these comparisons than many now suppose. What is abundantly clear is that the United States has learned almost nothing from HIV about how to deal forthrightly and honestly with a major health crisis. And this may be a helpful observation—if it inspires us to finally address the fact that Americans have never really had a notion of public health. By public health, I mean an understanding that the health of each group and person is fully dependent on the health of all. This is not a new lesson. Women such as Lillian Wald, a social services pioneer, coined the term in the late nineteenth century as they worked as nurses, social workers, and activists in the immigrant communities of New York. They understood that the health of the individual was dependent upon their community, and that of the community on the individual. But more than a century later, we still have not taken this to heart.
Wald and her circle of comrades envisioned public health as growing out of community. At the height of the Gilded Age, this constituted a new social theory—we might now call it intentional living. It harkened back to medieval notions of localized, mutually dependent support. It was relatively easy to implement in immigrant settings; people often had memories of village or shtetel life where personal health and community health were viscerally interconnected.
This vision of public health, however, never really gained institutional traction in U.S. politics or culture. It was great for Wald and other nurses to take care of people in New York’s ghettos, for example—so that diseases would not spread to wealthier parts of the city. But efforts at wider adoption of the concept faced a number of hurdles, not least being the term “public” itself. From the Latin publicus—for the people—the word in the United States has long borne the taint of association with the lower classes, of being a drain on society, and even—God forbid—of socialism: consider the class and social implications of phrases such as “public housing,” “public assistance,” “public transportation,” or even Obama’s “public option.” The American traditions of individualism, competition, and capitalism—what Max Weber identified as the Protestant Ethic—all praise a hierarchical social structure in which “the public” is well below those who have made it on their own. As Supreme Court chief justice Earl Warren noted, “Many people consider the things government does for them to be social progress but they regard the things government does for others as socialism.”
The ramifications of denying a broad vision of public health are manifest: no universal health care; little federal or state control of drug pricing; refusal to deal with an epidemic of gun violence; resistance to substantive discussion of environmental illness; lack of comprehensive, scientifically based sex ed and access to sexual health resources; refusal to allow needle exchange programs that are proven to work. Some of these decisions are based on claimed religious principles, even as the biblical precedents for them are vague. Others are predicated on social prejudices and insistence that corporate profit is more important than comprehensive health care. Is it any surprise then that many people—and especially the federal government—are almost incapable of conceptualizing and enacting basic disaster preparedness.
Although HIV is now treatable—even preventable—for those who can afford the drugs, it remains a pandemic.
Exacerbating this is that we have now endured several decades of right-wing efforts to defund, bury, and discredit the very kinds of scientific knowledge-making that are foundational to public health. In their stead, we have been left with social bias, reckless assumptions, conspiracy theories, and superstition. This may be one of the more striking resonances between the HIV/AIDS epidemic and COVID-19. The first cases of what would become known as HIV were reported in 1981. The virus was finally identified, after many false starts, in 1986. But concurrent with this process of scientific discovery, and antagonistic to it, religious and politics figures conjured their own explanations. Indeed, one of the most notable aspects of the HIV/AIDS epidemic was the sheer amount of religious blame used to “explain” the virus. “The sexual revolution has begun to devour its children. And among the revolutionary vanguard, as Gay rights activists, the mortality rate is highest and climbing. . . . The poor homosexuals — they have declared war upon nature, and now nature is exacting an awful retribution,” wrote Pat Buchanan in a 1983 op-ed in the New York Post. A year and a half later, he was hired as the White House communications director for Ronald Reagan, and in 1992 ran for president. Prejudice and idiocy are enduring. As recently as 2013, televangelist Pat Robertson proclaimed that in San Francisco, homosexuals had rigged finger rings with spikes that would give people HIV when they shook hands.
This same kind of religious-fueled superstition has been likewise informing U.S. responses to COVID-19. Ralph Drollinger, a former NBA administrator who now leads a weekly Bible study for Trump’s cabinet, has proclaimed that the disease is a product of God’s wrath against a host of “depraved minds,” including homosexuals and environmentalists. Regular attendees of Drollinger’s Bible study include Secretary of State Mike Pompeo, Housing and Urban Development Secretary Ben Carson, Education Secretary Betsy DeVos, and Health Secretary Alex Azar. As the COVID-19 pandemic grows—and national, personal, and social anxiety rises—we can expect much more of this.
In the face of such superstition and prejudice, how can we operationalize a concept of public health to shine a light in the darkness?
Simon Watney, a UK-based HIV/AIDS activist and early theorist of the epidemic, noted a few years after the first AIDS cases that there was “no AIDS epidemic”—that every city, location, region, and country had its own specific epidemic. This common-sense logic dislocated accepted thinking and helped map new solutions. The “AIDS epidemic” in San Francisco—mostly transmitted through male–male sexual contact—called for substantially different outreach, prevention information, education, community support, and treatment facilities than the epidemic in Newark, which was overwhelmingly the result of sharing needles.
Watney’s thinking was simple: don’t generalize, look at context. In Illness as Metaphor (1978), Susan Sontag argues that all disease is socially constructed. She gives the example of tuberculous and consumption—the former, a disease of impoverished urban dwellers, the latter, of cultured romantic artists—which were both caused by Mycobacterium tuberculosis. Culture shapes not only how we view disease, but how we experience it. Drawing on both Watney’s and Sontag’s insights, we can observe that outbreaks of COVID-19 in China, Italy, and the United States are all caused by the same pathogen. Yet the manifestation and response to each outbreak is constructed by socializing patterns, geography, population density, the role of the government in health care, and, most importantly, preparedness. Endless news chatter asking whether the United States will be the next Italy or the next South Korea ignores the fact that the United States is not very much like either of those countries with regard to cultural context and the matrices of social arrangements. Thinking big picture—and ignoring contexts, details, and specifics—is not smarter thinking but slipshod thinking. It also inhibits rational analysis of how to make everyday decisions in dealing with the virus.
More than a century later, we still have not taken the lessons of public health to heart.
One of the great advancements in HIV/AIDS education and prevention was the centering of risk evaluation and mitigation. It was assumed that no effective disease reduction strategy could begin from a place of abstinence: people were going to continue to engage in pleasure-seeking activities because people are people. So how could public health experts help people to realistically evaluate their risks of contracting or spreading the disease during interactions with other people, and were there ways that they could reduce some of that risk? This approach, called risk reduction, was a major breakthrough in controlling the spread of HIV, and has obvious bearing on the COVID-19 pandemic, in which people must now make live assessments of the risks posed by daily activities.
Understanding epidemiological risk is vital for curtailing a disease. Equally as important, though, is understanding that, because of our cultural biases, the concept of risk tends to play out as a logic of blame: Who is responsible for this disease? Who should be avoided? Who should be contained? Who should be outcast from society? Anthropologist Mary Douglas argues in her influential Purity and Danger: An Analysis of Concepts of Pollution and Taboo (1966) that disease and concepts of contamination always give rise to othering: separating the pure from the impure, presumed safety from presumed danger. Othering—of gay men, the gay community, IV drug users, sex workers, Haitians, even children living with HIV/AIDS—was central to how HIV/AIDS was imagined by many people across the United States. Gay men and gay male sexuality was demonized. People with HIV/AIDS were denied insurance, evicted from their apartments, and sometimes refused medical care, even funerals. The phrase “gay plague” became commonplace in the tabloids.
The measures and rhetoric were extreme. San Francisco’s health department argued for closing down gay male bathhouses and even bars. Proposition 64, a statewide initiative that would have allowed for the quarantining of people with HIV, was on the California ballot in 1986. Politicians in many other states raised the question of quarantine. In the 1980s and early ’90s, Robert Redfield—now director of the CDC, then an Army major at Walter Reed Medical Institute—worked with Americans for a Sound HIV/AIDS Policy (ASAP), a right-wing Christian group that lobbied to have people with HIV lose their professional licenses and be quarantined. Revered conservative spokesperson William F. Buckley proposed in a March 18, 1986, New York Times op-ed: “Everyone detected with AIDS should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals.” Even the gay community engaged in this knee-jerk blame game. In his 1987 bestselling And the Band Played On, gay journalist Randy Shilts blamed men who frequented bathhouses. Using completely faulty epidemiology, he also accused Gaetan Dugas, a Canadian flight attendant, of being “Patient Zero” and bringing HIV to the United States.
Risk in the age of COVID-19 is in some senses more clearly defined and just as abused. We know how COVID-19 is spread and how to avoid it. Disinfectant, washing hands, not touching the face, social distancing, and self-quarantining range from being easy, sensible health measures to more calculated and onerous acts of personal and social protection. Hysteria, though, so central to the response to HIV/AIDS, lurks at the periphery of thoughts and actions. The punditry, with Trump as its ringmaster, has characterized Chinese people as agents of disease, and hate crimes again Asian Americans have skyrocketed. Meanwhile, panic buying—of everything from canned soup to bleach and paper towels—is an irrational grasp for social stability. The anxiety and frenzy over toilet paper purchases perfectly illustrates Douglas’s ideas about the need to control and contain pollution.
Hysteria, so central to the response to HIV/AIDS, lurks at the periphery of COVID-19.
At the same time, those quadrants of society that have been most adamant in their rejection of science have in many cases refused even the most basic common-sense measures against the disease out a belief that the entire thing is somehow a left-wing plot against religious freedom. Many evangelical mega churches, such as The River at Tampa Bay, continue to hold services, claiming that belief in Jesus will protect parishioners from COVID-19 (in South Korea, some large COVID-19 clusters were traced to such services). And Jerry Falwell’s Bible college, Liberty University, has refused to close. Katherine Stewart, in the New York Times, makes the compelling case that “denial of science and critical thinking among religious ultraconservatives now haunts the American response to the coronavirus crisis” and that Trumps reliance on that base has worsened, if not caused, the virus’s spread to grow to epidemic proportions in the United States.
Religion is also guiding business. David Green, the right-wing evangelical owner of the national craft store Hobby Lobby—which pays clerks ten dollars an hour and has no sick leave policy—instructed store managers to stay open, when many nonessential commercial businesses were closing despite the pandemic. His reason: “We serve a God who will guide us through this storm, who will Guard us as we travel to places never seen before, and who, as a result of this experience, will Groom us to be better than we could have ever thought possible before now.” As Mary Douglas points out, blind religious belief is often more comforting than science.
As someone who lived through the moralistic crusades against gay men in the 1980s and early 1990s, I am enraged but not surprised to see so much of it happening again with COVID-19. Unlike HIV, which is transmitted in a very limited number of ways, COVID-19 spreads easily, efficiently, even casually, and there is little way to know who gave it to you since most of the infected are asymptomatic. It requires no intimate contact, indeed, no contact whatsoever. Theoretically this should reduce the miasma of blame: we might all be someone’s Patient Zero. Yet the impulse to blame is growing by the day. Trump’s continued mentions of the “Chinese virus” have now blossomed into a State Department memo,
reported in The Daily Beast, that instructed various federal agencies to blame China for a coverup that has caused the pandemic. Secretary Pompeo demanded that the G7 use the phrase “Wuhan virus” in their most recent statement on the pandemic. The closing off of travel from China and then much of Europe, after COVID-19 was already well established in the United States, was nationalist opportunism. And televangelist Mary Colbert has argued that China caused COVID-19 by eating biblically “unclean animals” as forbidden in Leviticus—a claim echoed, in secular tones, even by ostensibly left-leaning news outlets such as Vox.
The cycles of religious, nativist, and anti-sexual rhetoric of blame recur with astonishing frequency in U.S. history, and will certainly continue in the absence of a unifying, evidence-based culture of shared health.
Writing about COVID-19 while social distancing in my home is both strangely isolating and freeing. Having lived through the early years of the HIV/AIDS epidemic, these weeks—now stretching into an indefinite number—feel very different. Yet being sequestered in one epidemic allows for reflection on the other.
The hallmark of COVID-19 is separateness. The isolation—necessary to prevent the spread of infection—now defines human existence: doctors are afraid to hug their children when they come home from work, the most casual intimacies are forbidden, friends and families cannot hold funerals, Last Rites are given over Skype.
As horrifying, confusing, and grief-filled as the 1980s and ’90s were, I experienced them as being about closeness: organizing friends to bring meals to the homebound sick, people with AIDS attending support groups, the catharsis of group anger at ACT UP meetings, the exhausting exhilaration of memorials that both celebrated and mourned to disco music. Community was what defined both the grief and the resistance, the shared devastation and the resilience.
While the pandemic rages, and global and U.S. numbers increase by the hour, we are all alone and mostly not part of physical communities. Although constantly told that Americans are pulling together to fight this thing, most of us are not on the front lines of hospital care, but secluded in our living spaces. That which was public has now become private.
How do you measure what has been gained; what has been lost?