You Are Witness to a Crime

ACT UP’s legacy and the epidemic dead

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The call came early in the morning, November 9, 1990. I believe it was Kim Christensen who telephoned to tell me Ray Navarro had just died, and invited me to sit with his body before he was taken away and cremated. A number of us from ACT UP who cared for Ray throughout his illness joined the few who had witnessed the moment of his passing. Ray’s mother, Patricia, and his sister, Christine, were there with us in his hospital room on the seventh floor of St. Vincent’s, nicknamed the AIDS floor because it was fully dedicated to the treatment of patients with HIV-related illnesses. After her son’s death, Patricia, a long-time Chicana activist, also became a Los Angeles-based AIDS activist. When she speaks publicly, it is always as a mother who lost her son to AIDS. After Ray first became symptomatic, and again when she landed in New York to care for him during the last stretch of his life, she joined Ray’s informal (but highly organized) group of caretakers, of which I was one, and she immersed herself in the ecosystem of AIDS activism and advocacy.

In ACT UP, activists didn’t usually interact with family, especially when one of us was ill or hospitalized, because families so often rejected their children on the basis of their sexual identity, substance abuse, or AIDS diagnosis—even when they developed AIDS-related opportunistic infections. Patricia’s choice to fully accept Ray’s circumstances and how he chose to address them wasn’t automatic either. In a 2001 speech, Patricia said that from far away, she hadn’t grasped the importance of Ray’s activism—that his demonstrating, media production, and political organizing weren’t separate from his professional ambitions or his art practice. She recounted,

Ray went to New York in August [1988], and the following June was the International AIDS Conference in Montreal. He went up there with his lover Anthony [Ledesma], and while they were in Montreal his lover came down with PCP [pneumocystis pneumonia, one of the most prevalent opportunistic infections presenting in early AIDS patients] and was in a hospital in Montreal. They called me, and it was devastating. That was the first I knew about AIDS in our family. Anthony recovered . . . and all I could think of . . . well, I don’t have to tell you all that I could think of. But I couldn’t say anything. Thank god I had the wisdom to know not to say anything. . . .

[I said] “I don’t want to hear about this, Raymond, I want to hear about your studies.” It was incredibly insensitive, and I’m ashamed to say, as an old activist, I was not encouraging to my son being an activist—I wanted him to study. . . .

Ray refused to get tested until he came back to New York City and went to an anonymous test site. I knew nothing about any of this. All he said was, “I will not go to a doctor,” and he told me the reasons, and I said, “Oh my god!” He’d been telling me about all this stuff, but I hadn’t really been listening. I had just been saying, “You shouldn’t be going to these meetings and going to these demonstrations.”

When Ray did get tested, it took him a while to actually tell me he was positive, and that he was fine, he was seeing a good doctor—[Howard] Grossman and Joe Sonnabend. Of course, these names meant nothing to me then. He said that now that they had this drug [AZT], that everything was going to be wonderful. . . .

Around six months later, Ray called to say he was in the hospital because he’d had a seizure in the subway. Within a week or two of that he was diagnosed with TB, which at that time was an AIDS-related complex—it wasn’t considered an opportunistic infection. He went home after being in the hospital for something like two or three weeks and the next day became so ill with a headache that he went back to the hospital with cryptococcal meningitis—and was very, very sick. I tracked down where he was, because he wasn’t home. . . .

Ray was sitting in bed, holding court, and they were all sitting around telling him about the action they’d just done. One of his friends had just come back from a show that she’d had in Brussels. Somebody else had just come back from tearing down the Berlin Wall, and he was passing around chips of the wall. These were all artists—some were with ACT UP, some weren’t. He had all these people in his room, and the minute I saw his face I knew he was okay. He was still very, very sick, but he smiled, I guess just at my being there. It was very emotional—it was very emotional. I took a break and went in the waiting room. That was the first time that I saw the “Silence=Death” image, because they all had the buttons.

Care was offered when you joined others on the street with the intent to bring the AIDS crisis to an end. That seems like a low bar, but I assure you, it was not.

Slowly, Patricia came to understand Ray’s determination to make political meaning of what was happening to his body. She came to connect how the lack of a comprehensive and humane national health policy on AIDS affected every aspect of his health outcome, including his experience of dying. In that speech, Patricia highlights her trips to New York from her home in Los Angeles. That LAX-JFK-LAX route is the reverse of Ray’s journey to fulfill his ambition to become a queer artist and AIDS activist. Ray left Los Angeles and settled in New York to attend the Whitney Museum Independent Study Program, a step toward realizing his professional goals as an artist and writer. He joined ACT UP and partnered with Media Network, a not-for-profit alternative media information center, to curate and screen explicit educational AIDS videotapes, produced by and for people of color, some of which he made himself and with other ACT UP collaborators. Using popular genres of television like telenovelas and music videos, they demonstrated how HIV counseling and education might be practiced by community members in informal settings. He arranged for them to be screened in community centers located in neighborhoods with high sero-prevalence among people of color, including the South Bronx and Brooklyn. Ray’s last screening before his final hospitalization took place at the Guadalupe Cultural Arts Center in San Antonio, Texas, in February 1990. He wrote the stunning article, “Eso, me esta pasando,” articulating how he navigated his cultural heritage, family of origin, self-determined adult identity, and his belonging in queer communities.

I am an HIV positive Chicano gay man from Simi Valley, California. By looking at me you may not be able to see any of those things. You will also not be able to tell that I am a college-educated video maker and scared to death of my own culture. For the last several years I have grown comfortable with my gay identity. I have marched on the street, go-go danced in bars and wept at the death of people I respected who died from AIDS (Acquired Immune Deficiency Syndrome). So now I am also an AIDS activist. Full time.

Ray was an extraordinary storyteller, putting his body in places where he was labeled puto, Spanish slang for a male prostitute, an offense hurled at queer men and in Mexico used to describe cowards and traitors. Risking the possibility of repeated rejection, Ray returned to this community and insisted on his position within it. He refused to retreat from what was hard-won during his time in New York—how ACT UP enabled him to fashion an intersectional identity, pursue his professional and personal desires, and thrive. Ray depended on other members to provide him with the support that affirmed these aspirations before and during his illness.

Unlike the coronavirus pandemic, the AIDS epidemic was not treated as a national emergency. It was never perceived as imperiling normative family relations. The crime of government inaction—the refusal of public health resources including life-saving experimental treatments when there were no alternatives or withholding the dissemination of explicit and truthful information about sexual transmission and drug injection practices during the AIDS crisis—was tolerated precisely because it was not perceived as a threat to the nuclear family. The concentration of HIV infection and AIDS in poor and queer populations meant that the government considered the over one hundred thousand dead from AIDS by the end of 1990 to be expendable.

Bodies in Motion

Patricia’s willingness to come to New York and immerse herself in Ray’s world, rather than asking him to return to Los Angeles so that she could care for him at her home, was truly exceptional. AIDS and HIV treatments, social policies, and public health campaigns could not resort to heteronormative or familial narratives to garner sympathy and model compliance, so care for individual and public health during the early years of the AIDS epidemic became stories of queer networks of kinship and care. Traveling to Ray, literally and metaphorically, allowed Patricia to embrace the adult Ray had become: an AIDS activist and artist who had joined a grassroots activist organization that, by necessity, created a political model of queer kinship. In ACT UP, belonging and care was not predicated on or conferred by blood or soil. Care was offered when you joined others on the street with the intent to bring the AIDS crisis to an end. That seems like a low bar, but I assure you, it was not.

I suspect that what Patricia did couldn’t have been easy. She had to do what the rest of us did as members of ACT UP who cared for activists who were ill or dying. She had to attune herself to the nuances of Ray’s HIV infection and fully endorse his unwavering dedication to media activism, digital video and film curation, community organizing, and critical writing. And, most importantly, as a mother of a queer Chicano AIDS activist with HIV/AIDS, Patricia had to relinquish control over the way Ray “did” his illness. Instead, Ray required her to affirm and embrace his dependence on the ACT UP comrades, friends, and lovers who were already caring for him.

The care we provided flowed from the ethos of ACT UP. We prioritized, to the best of our ability, what we could do to enable Ray, always determined to be unruly with his body, to remain politically engaged and attend to his desire to make art and write, even as he became more physically debilitated. The ethos of ACT UP was to enable the most vulnerable to resist institutional demands for compliance in multiple registers—as a patient, a religious subject, as demographic data, or in the conditions of one’s death—for ACT UP was quick to critique standards of comportment designed to privilege the experience of the health care researcher or provider over the patient’s. And Ray was resolved throughout his illness to fight the ways in which the mainstream blamed people with AIDS for their sexual and social behaviors, and legitimized homophobic and racialized scapegoating. Close to the end, even when he became deaf, blind, and suffered from excruciating peripheral neuropathy, Ray lived to ensure that AIDS stigmatization couldn’t objectify him or use his body to make meaning of the AIDS epidemic. He authored the meaning of his situation, and he depended on us to make that happen for him.

Each political funeral revealed a body upon which the government had perpetrated murderous neglect, a crime in which the majority of the American people were complicit because they did not rouse themselves to care.

As a queer activist movement, ACT UP did not only use direct action to speed anti-retroviral development and opportunistic infection treatments through the government’s testing and approval process. ACT UP’s legacy is that ethos of collective care in support of self-determination. The group supported People With AIDS’ (PWAs) right to choose not only the course of their medical care but the way in which they could continue to matter politically and socially. This ethos was conceived in opposition to the historical disempowerment of the ill when they transformed into “patients,” vulnerable in relation to state power. This set of ethics was derived from the 1983 Denver Principles, collectively authored by PWAs and summarized by ACT UP alumnus Moisés Agusto-Rosario in his 2017 article “Living the Denver Principles.” Its authors were diagnosed very early in the epidemic, and they convened to articulate “the foundation for the self-empowerment and self-determination for PWAs (People With AIDS). In 1983, when the principles were written, HIV was a death sentence that was too often used as an excuse to deny housing, health care, even funeral services.” The Denver Principles insisted that the person who was most affected should have access to all the information and research to determine their own treatment, that PWAs had the right to choose how they would navigate their illnesses, that they had full autonomy over their bodies, and, by extension, should control their own political and cultural legacies.

The Denver Principles guided those of us who took up the work of caring for Ray through his death. We knew our obligation was to listen to his wishes and enable how he desired to live—and die, as he did in 1990, a mere three years after the founding of ACT UP. Other members of ACT UP, for whom there would be little progress on the treatment horizon in the years immediately following Ray’s death, would use that ethos to publicly extend how their bodies could matter politically beyond the event of their death.

Leave Your Body to Politics

I think of Ray and the group that cared for him as part of the first wave of ACT UP deaths. Another ACT UP member, Kevin Smith, died the day after Ray, on November 10. The following day brought the death of Vito Russo, yet another foundational figure in ACT UP, whose “Why We Fight” speech was the most accurate and devastating assessment of what it felt like to be isolated and fighting for your life and the lives of your friends in the face of a reactionary politics that deemed entire categories of people disposable. As he put it, “Only you can hear the screams of people who are dying and their cries for help.”

The 1990s ushered in a steady flow of deaths of ACT UP activists and, concomitantly, a slowdown of political and social attention to the ongoing crisis. As new activists joined ACT UP and formed political affinity groups to support one another while committing acts of civil disobedience, the theatrics of those demonstrations focused more and more on the impact of the deaths of our own, which we felt even more acutely as we lay in the streets, next to more members who were or had been ill.

The Marys were another group of approximately fifteen activists within ACT UP, who first began demonstrating together at the Stop The Church action at St. Patrick’s Cathedral in 1989. I wrote extensively about their subsequent political initiatives in a 2013 essay, “How to Do Things with Dead Bodies.” In one of their many infamous actions, they disrupted the broadcast of the MacNeil/Lehrer Report, handcuffing themselves to Robin MacNeil’s desk during the live show and forcing him to repeat their demand on air that the government refocus its efforts on the AIDS crisis instead of diverting resources to the first Gulf War. The Marys were also the key organizers of the 1991 “die in” of fifteen hundred AIDS activists near then-president George H.W. Bush’s Kennebunkport, Maine, vacation home, among the many other actions they conceived of as a small collective in ACT UP’s decentralized organization. As the Marys experienced the deaths of two of their initial members, John Stumpf and Dennis Kane, they began to research the impact of political funerals in other activist movements, inspired by ACT UP activist and artist David Wojnarowicz’s 1992 invocation:

There’s a thin line, a very thin line, and as each T-cell disappears from my body, it’s replaced by ten pounds of pressure, ten pounds of rage, ten pounds of pressure, ten pounds of rage, and I focus that rage into non-violent resistance, but the focus is starting to slip, the focus is starting to slip. My hands are beginning to move independent of self-restraint, and the egg is starting to crack. America, America, America seems to understand and accept murder as a self-defense against those who would murder other people. And it’s been murder on a daily basis for eight, nine, ten, eleven—count them—ten long years, and we’re expected to quietly and politely pay taxes to support this public and social murder, and we’re expected to quietly and politely make house in this windstorm of murder.

Following the Denver Principles, the wishes of the most vulnerable were actionable, and Wojnarowicz clearly desired to make his own death from AIDS resonate politically. Written on the back of the leather jacket Wojnarowicz wore to ACT UP demonstrations was “IF I DIE OF AIDS—FORGET BURIAL—JUST DROP MY BODY ON THE STEPS OF THE F.D.A.” And as I wrote in that earlier essay, “critical to all scenarios in a political funeral is the public display of the deceased” and the treatment of a body as though it was revered by the state.

At first, the Marys solicited PWAs from outside of their group to contribute their bodies to this potential political action—but there were many ethical and legal hurdles to take into account. But when three members of the group—Mark Lowe Fisher, Tim Baily, and Jon Greenberg—became sicker, they decided they would instrumentalize their own corpses, as Marys member Joy Episalla recounts in her interview with the ACT UP Oral History Project. Members of the Marys were already their caretakers; they entrusted their bodies to one another in many risky acts of protest. But now each specified his own terms for the event, trusting the surviving Marys to support the specificity of their desire to remain political beyond their deaths. ACT UP committed itself to enabling PWAs to push the limits of cultural, religious, and social conventions to remediate how, in the broader social sphere, PWAs were reduced to “AIDS victims” or “AIDS carriers.” Their humanity was so often diminished in the eyes of others, including their biological families. That is why Vito Russo’s “Why We Fight” speech was so effective. He saw us in our fullness. Vito, and Ray, and David, and the Marys’ Mark, Tim, and Jon, entrusted their bodies to us, charging us to enable them to continue to matter politically. Activist care concerned itself with their individual stories and desires even as we cared for their bodies up until and then after their deaths.

The prototype for the political funeral was the march the Marys organized for David Wojnarowicz after his death in July 1992. Bob Rafsky, a moral political force within ACT UP and one of the group’s key media tacticians, described the experience of that evening in one of the many versions of a letter he wrote to his young daughter Sara while he was dying. The letter has a jolting narrative structure, weaving in his description of Sara’s birth, his relationship with her mother, poetry, accounts of sex, nursery rhymes, and meditations on his parents’ history, their deaths, and thoughts about his own.

We took the streets and marched in honor of the artist David Wojnarowicz a week after his death from AIDS, as he had asked, carrying posters of his words and of him, silently following a line of drummers. Although our drums set off every car alarm in the East Village, the blocks we passed were almost empty and I began to wonder for whom we were marching.

As we approached Houston Street, where the traffic was heavy, I was distracted by the swirling lights of police cars, which had pulled up to form a barricade, and felt the old fear of being hurt or jailed. The people in the front however, decided not to take Houston, and turned down an empty block with nothing for me to feel or do. The march ended with a bonfire on the street. I walked aimlessly around the circle of people throwing their posters into the flames and watched the black smoke rise.

Suddenly the wind shifted, and the smoke flew into my throat. Turning away, choking, I realized what David Wojnarowicz must have understood, that the ceremony wasn’t for the few spectators but for me. The four beat drumroll followed by the three steady beats repeated first as we marched and then as our posters burned, was meant to enter my head and never leave, to accompany me when I wake, when I sleep, when I lay dying.

The Marys would go on to organize three more political funerals for their own over the next two years. The first was Mark Lowe Fisher’s on November 2, 1992. Immediately after his memorial service in Judson Memorial Church, The Marys lifted his casket, exited the building, and processed with his corpse in the pouring rain up Manhattan’s Sixth Avenue, all the time carefully sheltering his body with an umbrella.

Deliberate inaction and callous disregard by politicians are crimes against humanity, and one can trace those crimes on a continuum from Ronald Reagan to Donald Trump.

The shock value of the procession arose not so much from the violation of a legal and social norm that a corpse not appear on a public street, for PWA corpses, not unlike those who have died of coronavirus, were shunned by funeral directors and treated with great disrespect throughout the first decade of the crisis. Instead, what shocked the police and the passersby was the very opposite: the love, devotion, and care afforded to the PWA dead who were regularly stigmatized in life and then again in death. “Death takes place behind closed doors and is removed from reality, from the living,” Mark wrote, contextualizing his own political funeral. “I want to show the reality of my death, to display my body in public; I want the public to bear witness. We are not just spiraling statistics; we are people who have lives, who have purpose, who have lovers, friends, and families.” The public care of Mark’s body and the devotion to making Mark’s will a literal reality violated the social norms that enabled, as Mark wrote, a “criminal neglect so enormous that it amounts to genocide.” And Bob noted that funerals and memorials were not ever a private affair because the death of the body in question may have been prevented had the government chosen to allocate enough resources to stop HIV from becoming an epidemic and to offer proper medical care and support to the ill and dying. Bob wrote, “I go to memorial services not to remember the dead, but to remind the living that they’re witnesses to a crime.”

During the first decade of the AIDS crisis, the crime of government neglect played out again over the management of dead PWA bodies. That abjection was systemic: in New York City, PWA bodies, unclaimed by next of kin, were shipped in plain pine boxes to Hart Island, a desolate patch of land off the coast of the Bronx, where they were buried in mass, unmarked graves. During the height of the AIDS crisis, from 1980 to 2000, the mass graves of Hart Island received some fifteen hundred bodies from Bellevue Hospital Center, which had the city’s largest AIDS treatment center. Thousands more came from St. Luke’s-Roosevelt Hospital, Harlem Hospital Center, St. Vincent’s, and St. Clare’s Hospital. Hart Island also received crates of newborn bodies straight from pediatric AIDS units, many of whom had been born to women who were homeless, addicted to drugs, and dying of AIDS.

Even when the bodies of HIV/AIDS victims were claimed by family, it was commonplace through the first decade of the AIDS epidemic for funeral directors to reject them. Corey Kilgannon wrote in the New York Times about one exception: Robert Ruggiero, whose funeral home in the Bronx was one of the first in New York willing to embalm AIDS cadavers. Ruggiero recalled that making burial arrangements often entailed calling the estranged families of young gay men who had come to New York. “The parents would say, ‘It’s not our problem — just do what you have to do.’ . . . These families were so disheartened by the lifestyle their son was living. Some said, ‘Just cremate him and mail us the ashes.’”

Ashes and Diamonds

The chaotic disposal of bodies and the diminishment of funeral rites during the coronavirus pandemic has denied the living a key mode of assembly that could have taken on political valences like those of the ACT UP funerals. But the familial outrage that asserts that this phenomenon is a unique violation of sacred social norms is incorrect. It merely violates the expectations of those who believed the state would not fail them. When bodies piled up in refrigerated trucks, the shock we collectively experienced was because we believed social norms were being transgressed—even beyond the Trump administration’s incomprehensible practice of separating children from their parents and placing them in cages. But those norms never functioned for PWAs during the first decade of the epidemic. Each political funeral revealed a body upon which the government had perpetrated murderous neglect, a crime in which the majority of the American people were complicit because they did not rouse themselves to care. But instead of succumbing to the administrative policies governing their disappearance and disposal, living activists enabled the bodies of PWAs to contextualize the circumstances of their deaths.

We didn’t fully transcend birth or blood, but we rearranged its value in the national narrative.

The mismanagement of the pandemic has foregrounded the fissures in our systems of health care, social support, and care for our dead, systems upon which we have come to depend. A deluge of reports about backed-up cemeteries, bodies improperly stored in hospital morgues, difficulties obtaining cremation permits, and exhausted funeral directors overwhelmed by the sheer numbers of the dead appropriately shocked our sensibilities. One story that found traction on social media told of a Bronx widow suing a Brooklyn funeral home that allowed her husband’s body to decay in a U-Haul with other bodies. This negligence deprived us of what we assumed to be a right established by law and freedom of religious expression, an implied social compact that upholds our ability to respectfully memorialize our dead.

It’s no surprise then that there has been renewed interest in Sophocles’ Antigone this past year: the play’s narrative prioritizes the obligation of burying one’s family’s dead over the pragmatism of decree, made by another family member, to let a corpse rot for the sake of shoring up nationalist fervor. We respect those we love by the way that we handle their bodies and the ways we inter them. This allows us to understand our lineage and feel as though we belong. We understand how we are a community through our assembly of mourning. What happened—and continues to happen—during the coronavirus pandemic robs us of our ability to execute our familial obligations. But that itself is a normative narrative, not a queer one.

Against this backdrop, there were several wrenching but not unexpected public deaths in the summer and fall that rocked the American consciousness and at the same time reaffirmed how the pandemic had been narrated and experienced through hetero- and homonormative frameworks, as well as the state’s affirmation of particular bodies. After the deaths of progressive icons John Lewis and Ruth Bader Ginsburg, both their bodies lay in state in the Capitol, and for two days before her rotunda ceremony, Ginsburg lay in repose in front of the Supreme Court. In state funerals, as much as private ones, the dead body is a necessary component of the ritual. It is the focal object that transforms into the conduit of grief and the means for its resolution. But for Lewis and Ginsburg to smoothly ascend into the history books, the event required magnitude—a regal, symbolic setting and crowds of mourners—to complete the ritual. Mourners honored their bodies with the high social standing of the institution in which their bodies were temporarily interred; the corpses’ right to appear in public was validated through the choreography of bodies that arrived to show reverence. Theirs was no Zoom funeral.

It would follow then that ACT UP’s October 1992 Ashes Action, a solemn and ritualized march from the Capitol Building to the White House lawn so that lovers, children, friends, and partners of dead PWAs could reach through the fence and scatter their ashes was likewise a strong and performative act of reverence. The rituals of this public funeral were created by a coalition of people, most of whom had suffered a loss of public status and risked discrimination because of their own or their loved one’s AIDS diagnosis—or because they didn’t succumb to public panic and abandon PWAs. While it could never approach the form of a state funeral, what it had to do, as Wojnarowicz and Rafsky observed, was reverberate. ACT UP found a way to transgress that era’s equivalent of today’s Zoom funeral. They created an event that was extremely unsettling for those who heard about it or interacted with it, drawing upon the same sense of horror we are experiencing now, that the prohibition to properly care for the dead robs us of an essential part of what it means to be human.

Tim Bailey was another activist and a member of The Marys whose corpse was driven down to Washington, D.C., in July of the following year, serving as the central focal point of an AIDS demonstration in front of the White House. It’s a scene first conjured by Wojnarowicz in Close to the Knives. Wojnarowicz writes, “I imagine what it would be like if, each time a lover, friend or stranger died of this disease, their friends, lovers or neighbors would take the dead body and drive with it in a car a hundred miles an hour to washington d.c. and blast through the gates of the white house and come to a screeching halt before the entrance and dump their lifeless form on the front steps.”

AIDS activist political funerals emerged from an ethos of care, one which required us to publicly demonstrate, ever more urgently, that a body would not be devalued because their families of origin rejected their queer identities, sexual practices, or life choices. Human value did not flow from either blood or soil. Looking back now, it’s almost incomprehensible that we would have to go to those lengths to demonstrate just how much we cared for one another, again and again, for more than twelve years, just so that the government would meaningfully and equitably address a health crisis, or so that we could properly bury our dead.

Unfit to Print

The first clusters of AIDS-related illnesses were reported in 1981. They presented in gay men in San Francisco, Los Angeles, and New York and grew quickly into an epidemic because of the U.S. government’s unwillingness to respond promptly or systemically. Then, like now, there was an abdication of informed and active leadership. Likewise, proper information on AIDS prevention, transmission, and treatment was not forthcoming from the mainstream media, which refused to see how virulent racism, sexism, and homophobia were part and parcel of public health policy. The media’s own homophobia prevented a critical accounting of so many of the institutions upon which many depended for their lives, and moreover felt it within their moral duty to withhold simple lifesaving information. For instance, news outlets declined to take up a critical position on the awarding of local and state government contracts to Catholic Church-run hospitals for the treatment of HIV-related illnesses, which validated the Church’s prohibition on the dissemination of explicit information on AIDS prevention and transmission because it meant being explicit about sex. The Church’s abstinence-only policy even extended to counseling so many of the gay men who landed on that seventh floor of St. Vincent’s Hospital when they developed opportunistic infections. That cowardice in naming the oppression, intolerance, and bigotry by the likes of Ronald Reagan, George HW Bush, and especially the Catholic Church, only exacerbated the crisis.

Ray was one point, one body, from which I can illustrate a different form of social care created by AIDS activism.

This is only a partial recounting of the ways that fear and ostracization affected the queer lives of those most vulnerable to HIV/AIDS. A comprehensive accounting of how that played out in hospitals where patients were isolated and so many were given sub-par treatment is impossible here.

Peddled by the media and conservative politicians, vile fantasies about protecting the “general population” from HIV played out in very American ways—most obscenely through the denialism exhibited by then President Ronald Reagan’s refusal to even utter the word AIDS for the first four years of the crisis, and in the shocking suggestion by Republican pundit William F. Buckley, given validation by its publication in the New York Times, that AIDS “carriers” should be tattooed in the upper forearm if they were needle users, on the buttocks if they were “homosexuals,” and that women should only be allowed to marry men with AIDS if they agreed to sterilization. Justifiably, AIDS activists feared the uninhibited exercise of these fantasies of segregating and isolating queers, drug users, and immigrants. Hateful reveries of this sort, always involving an unruly body and the violence required to tame and control it, re-emerge at flash points, intertwined with the normative morality of the historical moment, and borne out by forced evacuations and detentions of non-white Americans throughout American history.

When the New York Times published Senator Tom Cotton’s racist op-ed in the wake of the Black Lives Matter demonstrations in early June of last year, for which the Times apologized the next day, in response to the critique by staffers on social media that the call for violence endangered their Black colleagues. In contrast, there was no such concession from that same paper in 1986 when AIDS activists raised similar objections. That is how deeply homophobia, racism, classism, ableism, and sexism were endorsed by mainstream narratives of the AIDS epidemic and reaffirmed in policy and public health decisions. No apology was issued after Buckley published his op-ed, and there was no reckoning with how it would affect queer and HIV-positive people working at the Times or escalate homophobic and AIDS-phobic related violence and fear.

Only four long years later, in 1990, when Times Deputy Editor Jeff Schmalz suffered a seizure in the newsroom and his AIDS diagnosis became public, did the Times begin grappling with its internalized homophobia and AIDS-phobia, in great part due to the media critique developed by ACT UP. When Schmaltz returned to the Times two years later, he was able to exploit the emotional impact of his own illness to publish reporting that offered a more comprehensive sense of the AIDS crisis by an out queer PWA reporter.

Not Personally Responsible

I was asked by this publication to write about the differences and the similarities between the AIDS epidemic and the coronavirus pandemic, ostensibly to offer some insight into the role of grief and mourning then and now, and how feelings of grief and loss and rituals of mourning were politically mobilized through the deployment of dead bodies. My first thought was that rather than merely compare or contrast, I would write so that we might see them as Bob Rafsky did, as did Ray Navarro, Vito Russo, David Wojnarowicz, Mark Lowe Fisher, Tim Bailey, and Jon Greenberg. A crime was committed. Deliberate inaction and callous disregard by politicians are crimes against humanity, and one can trace those crimes on a continuum from Ronald Reagan to Donald Trump. Public denialism as a strategy of governance reinforces a set of values: partnered with the neoliberal agenda of defunding public health systems, denialism sorts out bodies that are expendable, asserting the importance of profits over particular categories of people. That strategy persists.

If there were a meeting of delivery drivers and meatpacking workers like there was in 1983 of PWAs to write the Denver Principles, I suspect they would unpack the appellation “essential” and declare it a misnomer, for they know better than anyone that Amazon workers are far more susceptible to infection due to the conditions of their work but have no leverage to meaningfully transform their conditions in order to protect their health. What denialism demonstrates over and over is the prioritization of the economy over lives, that workers are expendable and replaceable. That has to be resisted in language as well as in our daily actions. It’s no coincidence that as I write this, the rate of Amazon’s daily hiring (1,400 workers) is almost equal to the number of Americans dying daily (1,350) of coronavirus.

Denialism also sustains the twisted outcomes of the assertion of individual liberties such as “economic freedom” and “bodily autonomy.” The claim to bodily autonomy, in both the AIDS crisis and before, is based on historical opposition to the regulation and experimentation of categories of bodies without consent, as well as procedures that diminish people’s life prospects for the benefit and prosperity of others. Its reference points are the histories of forced sterilization and eugenics—uses of science and medicine created to eliminate traits deemed morally inferior like “feeblemindedness” and “sexual deviance,” or to eradicate “undesirable” populations. Mask mandates are not an encroachment on bodily autonomy. Like safer sex practices and harm reduction strategies, masking and social distancing protect and honor the most, not the least vulnerable—and that is a somewhat mutable category shared by the AIDS epidemic and the current pandemic, for it seems that the poor and people of color bear the lingering brunt of all public health emergencies.

The virulent disregard for mask-wearing follows the logic of Buckley’s spurious calls for tattoos; it is a form of violence that stigmatizes those who care and puts the vulnerable even more at risk. The thousands of parents and families who dissociated themselves from their ill children and disrespected those children’s chosen identities during the AIDS crisis—justifying their abandonment through adherence to white fundamentalist Christian values—endangered lives when they withdrew their support. The AIDS crisis demonstrated a murderous disregard for queers, people with substance use disorders, and Haitians—three of the “4 H’s.” Only the fourth “H,” the hemophiliacs, were deemed not personally responsible for their disease.

It’s Mourning in America

When Patricia Navarro flew to New York for the final months of her son Ray’s life, she joined a PWAC (People With AIDS Coalition) mothers’ group and attended ACT UP meetings. She had her own group of AIDS activist friends, some of whom did not intersect with Ray’s circle. And her family attended the memorial service at Judson Memorial Church. She gave one of the eulogies. I gave another. And so did many of his ACT UP friends. Ray was eulogized by so many ACT UP comrades who claimed him, who demonstrated with him, and who cared for him. Ray’s body was cremated, and I like to think we gave him back to his family as our offering. We didn’t fully transcend birth or blood, but we rearranged its value in the national narrative. Gathering at his side after his death, together, was necessary and profound. It affirmed our unassailable bonds, bonds that remain legally recognized only by blood relation, marriage, and adoption.

When Ray’s sister Christine was traveling back to Simi Valley, California, after the memorial service, she was stopped at airport security screening: her carry-on baggage had set off alarms. She also may have been profiled because of her brown skin. But when asked about the contents of the lead-lined urn, Christine burst into tears and replied, “That’s my brother!” That’s what all of us in ACT UP would have said about our dead.

ACT UP offered me the collective framework to express that in the care for and about Ray’s body in the street, in our homes, and in the hospital.

My interest in writing this essay was prompted by another funeral, one that seemed to exemplify the unequal distribution of mourning and how an in-person memorial assembly has become a privilege, rather than a shared social good. Last summer, Donald Trump was able to travel to New York to visit his ill brother Robert in the hospital, and when Robert died, Trump arranged to transport his body so that it would appear in the East Room of the White House for a funeral service. The service was the first of its kind for a family member of the president in over one hundred years. It was a brief and rare performance of solemnity and empathy in the face of death, demonstrated by a man loathe to publicly mourn. “It is what it is,” Trump has said about the 260,000 Americans killed by the pandemic as of this writing. Robert Trump’s social value was underscored by the ease with which his corpse entered the White House, and that privilege demonstrated Trump’s diminished set of values, adopted by the National Socialist Party, of allegiance only to “blood and soil.”

I read the event as a shocking performative statement because though neither of these men deserved this privilege, but they assume it as their right. This essay is a gesture to resist that narrative by memorializing Ray, Vito, Bob, David, Mark, Tim, Jon, and so many others. I often write about Ray’s activism and his work, not because he was my brother either by blood or by metaphor but because I came to love him in a way that the state does not recognize as legitimate. ACT UP offered me the collective framework to express that in the care for and about his body in the street, in our homes, and in the hospital. It’s obvious that the social distancing required by the coronavirus pandemic untethers those affective, embodied experiences. Now, new political relationships begin disembodied, mediated by screens.

It’s hard to give you a rich accounting of a non-monogamous activist love affair in mere words, relations made deeper by repeated political meetings, street demos, club dates, dinners, and creative collaborations. Ray was one point, one body, from which I can illustrate a different form of social care created by AIDS activism. And Ray expanded those formations of care beyond my horizon, making other intersectional relationships because we enabled him to do so while he was ill. It took a queer activist ethos of care to enable him to move in between the queer and privileged world of early AIDS activism and the Latinx and Chicano communities in which he was raised, where he was made to feel like an outcast for being queer. Ray offered effective and explicit HIV prevention and treatment information targeted to those most at risk, and his audience listened because of his insistence that comprehensive and empathic health care, housing, and a social safety net is a right for every individual residing within our borders. He advanced those objectives in ACT UP. Ray also felt compelled to show up in places that he had experienced as unsafe while growing up. That act of placing his body where it had been discriminated against and not fully accepted testified to ACT UP’s impact on his own health outcome, for with ACT UP’s support, Ray could remain an activist and an artist even through his illness.

In “Eso, me esta pasando” Ray contextualizes the AIDS crisis as “part of the larger social agenda of an insensitive government.” Ray wrote:

That old enemy La Migra is even in on the act as HIV-positive immigrants are refused their residency status or are threatened with deportation due to their HIV seropositivity. Women are forcibly sterilized before being allowed to participate in clinical trials for experimental AIDS treatments. These same clinical trials routinely exclude Latinos from admission. A crude and familiar justification is offered: that we fail to meet the “cultural criterion” necessary for collecting accurate data. This begins to sound more and more like Uncle Sam’s traditional line.

We in ACT UP afforded each and every PWA the support to be unruly. The fullness of Ray’s intersectional identities gave credence to his demand to de-stigmatize the stain of HIV and its transmission in the Latinx communities; to endorse the principles of harm reduction over abstinence or perfect compliance; to demonstrate the efficacy of sex-positive approaches to HIV transmission and treatment; and to dismantle the destructive homophobia that he had to overcome in order to fully express all aspects of himself, in acts that might defy heteronormative morality, “to . . . march on the streets, go-go dance in bars, and weep at the death of people I respected from AIDS.”

Mourning is an invented, expressive ritual. It needs to be observed and experienced among others who can affirm the loss. But it can also remind you of the crime being committed in front of your eyes, a crime that is hard to see when isolated and alone. If AIDS activism can teach us anything, it can demonstrate how more ethical political formations attuned to the individual needs and identities of each person and privileging the most vulnerable among us can create rich imaginative acts of mourning and memorialization that also expose the injustices and inequities of life outcomes. We are still in the early stages of unraveling and naming all the social fissures that catapulted this public health crisis into a pandemic. What I have learned from the AIDS epidemic is that our methods of mourning should not exclude the way in which politics affect the matter and the circumstances of our bodies.

Debra Levine is the director of undergraduate studies and lecturer in theater, dance, and media at Harvard Unviersity. Her work has appeared in TDR: The Drama Review; GLQ; Disability Studies Quarterly; e-misférica, the Journal for the Hemispheric Institute of Performance; and elsewhere.

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