Politics

I Study Prisons and AIDS History. Here’s Why Self-Isolation Really Scares Me.

What happens if isolation becomes a new way of life?

A Paris apartment complex seen out a window, with two people standing on a balcony.
Parisians chat on their balcony during the lockdown ordered by the French government to combat the coronavirus on Wednesday.
Omar Havana/Getty Images

When I first considered the now-familiar phrases self-isolation and social distancing, I felt frightened, because I live alone.

For a habitually solitary person, it seemed like a counterintuitive reaction. I’ve lived alone for about 15 years and have almost always been single. My parents are long deceased, as is much of my family of origin. I’ve never lived with a boyfriend, or even stayed with one for more than a few weeks while on holiday. I’m a writer, and I am happy sitting in archives or drafting prose or reading for eight, 10, or 12 hours on any given day. When I visit other people’s homes during vacations, I find I need some significant alone time almost every day.

But when I emerge from writing or research, I do—like many introverts—enjoy actually seeing other people. I love being in public spaces. I love feeling at one with the cities of New York or Chicago or Athens by riding their metros and watching their people, silently observing what they are wearing and taking joy in their style and interactions. I love biking through traffic and getting a feel for the rhythm of the day. I love teaching, and while the extroversion required can leave me tired afterward, I have recently discovered in my new life as a college professor the joy of learning with students, both in the classroom and one-on-one during office hours. (It is a joy that is especially sweet after many years of having spent way too much time staring at a computer screen while writing a doctoral dissertation.) As a journalist, I love interviewing people and listening to their stories, particularly when they’re gathered at political rallies or on the march for justice. As a gay man, I love finding and meeting other gay men, and getting to know their life stories in some bar, or in their bed or mine.

And at the end of my writing days, I do love spending time with and partying with friends old and new—whether we are meeting in cafés talking about ideas, or out dancing together, or cooking together. I imagine this is a feeling akin to what others feel when they are eager to get home to more traditional families. Governments are now banning large gatherings of people, as they should.

As someone who studies epidemics, I have been reading up a lot on social distancing. I can understand its clear benefits and that it’s an effective shared sacrifice for the public good, even though what exactly social distancing means is up for debate. But as we are encouraged to self-isolate, I am mindful that some of us are going home to families that—while not always offering the idealized, imagined safety of the “the bosom of the family”—will still offer a chance for some socialization, even if it’s potentially harmful (more on that later). And I am also mindful that, for people like me, all the socializing I do takes place either outside of my home or involves people who don’t live with me traveling to my home. And once those modes of socialization are cut off, I will be totally alone. Mental health is health, and being aware of how isolation will affect the mental health of single people—especially those less socially engaged than I am—is of major importance in this pandemic.

But even beyond this, I am concerned about what this radical shift in socialization will mean for all of us in the future. My study of prisons warns about the increasing isolation and the mandatory substitution of screen-based technology for human contact that incarcerated and legally enslaved people are already subjected to. My study of AIDS history tells me how activists have fought another virus for decades but reminds me that a major tool in that fight, gathering physical bodies in public space, is becoming nearly impossible. Temporary isolation as a means to ending or curbing this plague is one thing, but what if what it takes for the people of Earth to fight this plague leaves us in a place of increased alienation in the long term?

“Home Detention”

There is no shortage of ironies and absurdities about the current crisis, among them the idea that sending people home from offices and schools automatically makes them safer. While social distancing will “make the public body safer,” as my friend Adia Benton puts it, “it might make individual bodies less safe.”

Benton is a professor of anthropology at Northwestern University who studies public health and infectious disease outbreaks. When I saw her tweet that she’d “feel better about isolation and distance if I felt other strategies were also in place to actually find out who is sick. Like I gotta get pneumonia before anyone suspects anything?” I called her up to ask her about it.

Her concern echoed a concern of mine: How safe is it having families together in their homes? Apart from those with first-responder relatives, most families are not going to maintain social distancing with one another the way friends or strangers might. Parents are going to hug their children and change their diapers. Partners are going to keep sleeping in the same beds. Might families be where the epidemic spreads? Benton has been reading the research and notes that when you look at China, people were “getting infected in clusters in their houses.”

Adding that “home becomes a kind of detention center” in these situations, she said that while discussion often focuses on the household structure of a nuclear family, people really live in all kinds of situations in homes—with roommates or extended family or professional caregivers, often with some people who may be coming or going even if some household members isolate. This “doesn’t necessarily protect people within each home,” Benton says, though it “does bring down the curve overall.”

This reminds me of how research in 2014 (conducted before a drug was available that could prevent HIV in negative men) showed that gay men who were in romantic relationships were at a higher risk for HIV than single gay men. Because gay men in couples imagined that their romantic relationship provided prophylaxis, they were less likely to use condoms with their primary partner than single gay men were to use condoms with all partners. We are socialized to believe our relationships create some kind of biological protection when they do not; thus, lots of people are probably being a lot more cautious in touching and interacting with people outside of their home than they are about touching the people closest to them in their home.

Benton has studied Ebola extensively, and she’s been thinking about how people awaiting Ebola tests were placed in “transit centers” in West Africa, “and while people would be waiting for tests to come back, people who were not sick became sick.” Because so few people in the U.S. are getting tested, when all members of a family retreat to their home believing they are well because they are asymptomatic, other members of the family might become infected from their close proximity. “If it’s going to be spread,” Benton wrote, “it’s going to be through intimate connections.”

As two college professors, we also discussed how it is a mistake to assume sending people home makes them safe in the overall context for their lives. Heteronormative thinking presumes that home is the safest place, overplaying the falsely hyped menace faced by “stranger danger” and downplaying the reality that the most likely place people face sexual and physical violence is in their homes. (When I tweeted about this, I was relieved that a reader immediately tweeted back about how groups like the “Jewish Coalition Against Domestic Abuse, which supports victims in the Washington, D.C.-area, announced that it is ‘safety planning with people who may be quarantined with their abuser.’ The group urged those needing help to call its helpline.”) Benton told me she remembers when she’s had students “who needed to go home on break who didn’t want to,” which brought on “a lot of suicide ideation.”

“Those things aren’t being talked about enough—kids who got kicked out of home for coming out, or who left because they were abused, or because the pressure was too high,” she said.

Social distancing by way of home detention may work for the public health, but many individuals will pay a price for it. Not all men trying to work who feel they are interrupted by women or children will be as good-humored as the professor in the BBC viral video. That living with guns in your home increases your chance of death, there has been a surge in gun sales, and people will be spending more time at home than ever portends danger. Without figuring out how to get lots of people tested quickly, that sacrificial price could mean people’s health. And without figuring out how to support people in abusive living situations now denied any hours of respite away, the sacrifice could be lethal.

“PANOPTO”

Classrooms can be fun. You get to play with ideas that the market would dismiss as unworthy. When I teach, I make a soundtrack of songs thematically to play as students arrive, and then I have a student lead a conversation about it. It’s a nice way to ground our classroom in a critical practice that is also enjoyable. Yet even in their best state, classrooms are still hierarchies; teachers and students occupy different levels of power, and both are subject to institutional racism, sexism, and surveillance.

I have a colleague who shows their students one photo each week either of a prison, a school, or a hospital, and they ask their students to identify which one it is. They usually can’t, but there is still humor (if bleak) in the shared experience of analyzing such photos together and thinking about the physical space of institutions inside an institution.

I am grateful financially that my work as a professor will go on in a time so many are losing income. But when it comes to teaching online, I am mindful that, for me and my students, many of the joys of teaching and learning together simply cannot be replicated through a screen. The electric nature of listening to music, looking at images, or debating ideas depends on social cues. But even more worrisome than that, our classrooms will now be under heavy surveillance. As University of Iowa professor of sociology and African American studies Louise Seamster mused on Twitter, “Just got an IT email suggesting the use of lecture-recording software called Panopto. PANOPTO.” In his essay “Panopticism” from Discipline & Punish: The Birth of the Prison, the philosopher Michel Foucault writes about Jeremy Bentham’s design for a tower inside of prisons meant to be staffed by a single guard, “to induce in the inmate a state of conscious and permanent visibility that assures the automatic functioning of power.”

Not only will classes be online for the foreseeable future; they may be recorded. Universities or private platforms might claim intellectual property to a professor’s lectures. Clips of what students or professors say might be leaked online, go viral, and be used against them professionally—and fear of this might make students or professors turn the panopticon upon themselves and self-censor. This would be a great loss to the often roving space of the classroom to think through ideas in a capacious manner. On recorded video, a student might not critique (let alone joke about) how much their school looks like a prison if they want to be a teacher someday.

It’s not all bad; disabled students, students with transportation issues, and students with sick children have long been asking for an ability to attend classes remotely with good reason. But one of my biggest fears is that once universities, businesses, and governments see that not investing in real estate may be cheaper—and that having each worker or student maintain their own computers at home is also cheaper—they might make the decision to do away with in-person meetings as much as possible, if not altogether.

Prisons are sites where technologies are first tested on captive populations that are later used in hospitals and schools. For instance, for years, Securus Technology has been installing equipment for video visitations in prisons that mandate that the prisons must ban in-person visitation and incarcerated people can only be allowed to talk to their loved ones through Securus screens. For years, they have been ending in-person visits under a guise of austerity. According to the Marshall Project, prisons in all 50 states have curtailed or entirely ended visitations because of the coronavirus. My fear is that, as the technology that allows institutions to facilitate communication with potentially fewer capital costs (and that increases surveillance) flourishes in this period, what Naomi Klein calls the “shock doctrine” will take hold: If this crisis passes, school and hospitals will do more work through screens like prisons already do, allow less in-person interaction, and justify these changes for reasons of cost and security.

And if there isn’t mass rebellion to return to in-person contact, the already fuzzy distinctions between schools, prisons, and hospitals will disappear altogether. But how can we mass mobilize in quarantine?

ACT UP

A lot has been made of the coronavirus and the flu of 1918. As a scholar of HIV/AIDS, I’ve been thinking about what the AIDS pandemic—which is not in the past and has killed 38 million and counting—can teach us about this pandemic.

There are important differences and important similarities with these two global pandemics. At the viral level, the human immunodeficiency virus, and the novel coronavirus, or COVID-19, are different viruses with very different modes of transmission. HIV is a relatively inefficient virus that is difficult to contract; it can only be transmitted through certain bodily fluids, such as blood, semen, and breast milk, and even then, transmission happens relatively infrequently. (For instance, the Centers for Disease Control and Prevention estimates that on average, per 10,000 instances of HIV exposure, transmission will only happen just 138 times via receptive anal intercourse, 63 times via injection drug use, and only eight times via receptive vaginal intercourse.) And while we don’t yet know how frequently exposure to COVID-19 will result in transmission, it is clearly far more efficient at transmitting between humans than HIV. We certainly know that the novel coronavirus transmits in ways HIV does not, such as touch, shared surfaces, respiratory droplets, and casual contact.

There are real and perceived differences between a respiratory virus like a coronavirus and a retrovirus like HIV. A respiratory virus is something we imagine comes into your body (maybe even annually, like influenza) and, if your body survives it, eventually leaves your body; we imagine that we “get over it.” Retroviruses like HIV can be kept in check very effectively, but we never imagine that they “leave the body” entirely. HIV and the coronavirus are also very different in that the former epidemic has been located in specific communities (which differ between different countries), while the latter is transmitting among the general public the world over. Perhaps the most stark difference between the viruses right now is that HIV can be managed in such a way that people living with the virus not only live normal life spans, but—when properly medicated—their viral load gets so undetectably low that they become unable to transmit the virus to others. Meanwhile, there is no medication to effectively curb the coronavirus or its transmissibility, just ways to treat some of its symptoms.

And yet, there are a lot of similarities between the two pandemics and—just as importantly—between the politics that leave the same kinds of people most at risk for transmission (and at risk for inadequate post-transmission treatment). People who are homeless, incarcerated, or lacking health insurance are particularly vulnerable to both. HIV and the coronavirus are both racialized in the U.S. imagination in dangerous ways, the former imagined as Black and the latter imagined as Asian. Both HIV and the coronavirus have been used to justify illogical, stigmatizing travel bans. (While keeping people in place can be very helpful with a pandemic as easily transmitted as COVID-19, the Trump administration restricted travel from Europe long after the virus was already widely circulating in the U.S.; early testing would have been far more useful than blaming “foreigners” for what had already become a domestic crisis.) Untreated, HIV compromises people’s immune systems and the coronavirus hits people hard who already have compromised immune systems. Both viruses have an asymptomatic incubation period in which the person living with it might have no idea, driving asymptomatic transmission. And, because of ableism in America—which imagines individual and national bodies as healthy until sullied by a “foreigner”—people living with either virus have been demonized as invaders, as if they have engaged in some kind of moral failing.

The initial responses to both AIDS and COVID-19 were bungled by inept and callous responses from Republican administrations for related but distinct reasons. The Reagan administration’s inaction on AIDS was because of whom it initially affected: homosexual men and people who injected intravenous drugs, who were written off as “fags” and “junkies” respectively. More recently, the Trump administration’s inaction on COVID-19 was largely fueled by Trump’s lifelong habit of distancing himself from bad news; however, I think this was also at least partially because of who the commander in chief assumed it would hurt most: the sick and infirm. Donald Trump has a history of openly mocking the disabled, and his unhinged musings in early March that “we have thousands or hundreds of thousands of people that get better, just by, you know, sitting around and even going to work” reveals a common American assumption that people should be strong enough not to fall ill.

Both the Reagan and Trump responses happened within general frameworks of austerity and of individualistic ableism, the latter of which devalues people who are in vulnerable categories because they deviate from the young and healthy presumed norm. If necropolitics is what the post-colonial scholar Achille Mbembe described as when “the ultimate expression of sovereignty resides, to a large degree, in the power and the capacity to dictate who may live and who must die,” than the early necropolitical responses by Ronald Reagan’s White House to AIDS and the Trump White House to COVID-19 are remarkably similar: They both imagined the populations hit would be disposable.*

Curiously, moments of destigmatizing both viruses lie in a common denominator: the actor Tom Hanks. When he won the Oscar in 1994 for playing a man who died of AIDS in the film Philadelphia, he praised two gay men he’d known and said “my work, in this case is magnified by the fact that the streets of heaven are too crowded with angels. We know their names. They number a thousand for each one of the red ribbons that we wear here tonight.” As a straight white man, Hanks helped America think more about AIDS. And decades later, when Hanks and wife, Rita Wilson, went public that they had tested positively for the coronavirus in Australia, they not only helped destigmatize this new virus but helped sound the alarm in the U.S. that testing wasn’t happening quickly enough. (The downside of Hanks as the face of either virus is that it might distort the public’s perception of who might be the most at risk.)

The coronavirus crisis demands activist interventions. The crisis has led governments to change election dates and to ramp up surveillance; businesses seem to be doing things like reducing workers to zero hours while refusing to formally lay them off, so that they can neither qualify for employer insurance nor unemployment. Humans need a collective response.

There is also a lot we can learn by looking at the politics of how activists have responded to HIV to think about how we might address this new virus. In 1987, the AIDS Coalition to Unleash Power, or ACT UP, began meeting in New York City. A model for Occupy Wall Street many years later, the group of direct action activists used direct democracy, even with meetings of hundreds. ACT UP got in people’s faces to demand government and businesses respond faster and with more urgency to the AIDS crisis. The biggest currency they used was their bodies, gathered in mass. They laid down in streets to protest inaction, stormed the New York Stock Exchange and took over the Food and Drug Administration. In 1992, they even marched to the White House and threw the dead, cremated remains of people who had died of AIDS onto its lawn. But they also used their bodies to transgressively maintain intimacy, such as at the 1987 kiss-in at St. Vincent’s hospital. There is a scene in the film BPM (about ACT UP Paris) in which a gay man gives his friend who is dying of AIDS a hand job in the hospital that is among the most honest depictions of intimacy I have ever seen depicted in a feature film sex scene—and it captures how diligently gay people worked to make sure their sick and despised friends still experienced care.

I’ve spent a lot of time in the ACT UP archives, where I’ve seen how many members were calling for universal health care decades ago; they believed that detangling health insurance from jobs and marriages would result in a kind of queer liberation. Even when they protested AIDS specifically, many members pointed out the terrible conditions all people faced in the U.S. health care system. While its numbers have waxed and waned over the years, the New York chapter has continued to meet on Monday nights for more than three decades. It has a robust social media presence, and for the past few years, ACT UP New York has been involved in a particular fight that we in the U.S. should be paying attention to right now. ACT UP has been fighting Gilead pharmaceuticals for price-gouging HIV medications. Because Gilead is among the medical corporations closest to developing COVID-19 medication, ACT UP could play a significant, well-informed role in pressuring Gilead (and the politicians beholden to pharmaceutical manufacturers) to distribute it freely.

But, for the first time last week, I went to an actual ACT UP meeting, in NYC’s LGBTQ center. A couple dozen people were there—a beautiful mix of races, ages, and expressions of gender. Some people had been there in the early days; some were there for the first time. On the agenda were what to plan for Harlem Pride, how to help people find housing, how to pressure the remaining presidential candidates on AIDS, and what to do about the coronavirus. The passion in the room was palpable, and with such a rich deep history of activism and recent history with Gilead in the present, I could imagine many of the people who are suddenly wanting to do something swelling ACT UP’s ranks to those of its heyday.

But here’s the ACT UP conundrum: Despite their strong Twitter presence, their history and power are embodied in physical bodies taking up physical space.

I asked Stephen Helmke, who started coming to ACT UP meetings in 1988, what those of us facing this new crisis can learn from decades of AIDS activism. “The aura of social outcast and the broad public fear and avoidance of otherness and identification of a vector, and the hate lodged at the vector—that was the experience of people with HIV,” he said, reflecting with sympathy on prejudice being deflected toward Asians and Asian Americans. He also thought we could get behind universal health care. “The ACT UP chant that health care as a right,” he said, which was directed at HIV positive and negative people, “was that unless you contributed to the public health, then you cannot be free from its maladies. You are going to be at risk of a pandemic until you secure health care for everyone.”

Like many at the meeting, Helmke is concerned about what COVID-19 means for people living with HIV. In theory, people living with HIV whose medications are working aren’t more susceptible than the rest of us; but, many long-term survivors of HIV/AIDS have “reconstituted immunity,” are older, and have other conditions that do make them more susceptible—the very people who shouldn’t be out in public meeting or protesting right now. (Given that homelessness is a predictive factor in who is most at risk for HIV/AIDS and of people who can’t self-isolate, it is likely COVID-19 could be devastating to the unhoused.)

“For a long time our model has been,” ACT UP member Jake Powell told me, “we have power by being able to physically show up and demand accountability and to not be quiet. To be in the room where” decisions are made, and by “storming offices and disrupting space.” But this new virus means, precisely, that such tactics are impossible to try to shape the political response to the virus—and how our isolation precludes such physical collective action is a conundrum.

And at the moment its history and politics could be so broadly useful, ACT UP meetings have moved online. They’ve now moved to Google Hangouts.

As I’ve watched people struggle to adapt pretty quickly—to stop going to sex parties or to start washing hands—I am trying to be gentle. The social scientist in me understands that behavior is learned over time and takes time to change. Many people are mourning that our ways have to change, and grieving this takes a bit of time.

One thing we have to grieve is the myth that our way of life is coming back. It’s not. AIDS changed so much in the world, both the obvious and hidden. Nearly everything changed with AIDS medically, and a lot politically, too, from the nearly invisible (how blood is screened and how drug trials are happening so rapidly right now) to the highly visible and day-to-day. Like, the use of single-use plastics and sterilized products shot way up. Like, your dentist and dental hygienists didn’t wear gloves before AIDS, and first-responders didn’t treat everyone as if they might have HIV.

There’s power in how, for the first time in history, any human on the planet can instantly communicate with any other and talk about facing the same challenge. This new crisis will change everything. Everything. Everything about how we work and socialize, everything about how we make love and make politics. It might very well be a less haptic world, a more screen-centered and surveilled world. The world will be rebuilt, and we have a chance to make it better—but this will only happen if we can figure out mutual care and mass mobilization with tactics that have never been used on such a scale before. We’d do well to listen to leadership from disabled activists who have a lot of experience with political action without needing physical presence. But we have to keep thinking critically. There are no easy answers, and the status quo won’t do.

After being told she could no longer visit her husband with Alzheimer’s in his nursing home—to whom she’s been married for more than a half-century—an elderly friend of mine wrote on Facebook of also “missing my church friends” when she needs their comfort most and of the “dilemma of social distancing vs. social isolation.”

This is the central political and spiritual dilemma of our time.

Correction, March 21, 2020: This post originally misspelled Achille Mbembe’s first name.