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An AIDS Activist’s Archive

Kelly Jo Carlson

Kelly Jo Carlson: Peter's Retreat, 2020. On view in 'Community in a Time of Crisis: Yale, New Haven, and HIV/AIDS 1981–1996' at Yale School of Medicine.

Kelly Jo Carlson

Kelly Jo Carlson: Peter's Retreat, 2020. On view in 'Community in a Time of Crisis: Yale, New Haven, and HIV/AIDS 1981–1996' at Yale School of Medicine.

June Holmes was in her late twenties, working as a social worker on Long Island, when she first heard about “this thing called AIDS.” It was sometime in the first half of the 1980s, and Holmes was sitting in her living room with two good friends. One, a nurse, turned to the other, a gay man, and said, “Be careful. Something really awful is happening to gay men.”

Holmes, who had just moved to Long Island, was already planning her exit—she wanted to return to New Haven, Connecticut, where she had lived while earning her undergraduate degree in social work at Southern Connecticut State University. Her friend’s warning piqued her interest, so when she started seeing newspaper headlines about AIDS and New Haven not long thereafter, she paid attention. The articles were, unusually for the time, not about a gay man with AIDS, but about a woman with AIDS—whom the newspapers identified using her full name. The woman, Carlotta Locklear, was almost exactly the same age as Holmes, but in pretty much every other respect the two women differed: Holmes was white, Locklear was Black; Holmes was educated and safely middle-class, while Locklear was a precariously housed sex worker and intravenous drug user.

The papers claimed, damningly, that Locklear knew she had AIDS, but was continuing to have sex with clients anyway. Holmes recalled years later that the articles “just kind of broke my heart.” They disclosed so much personal information about Locklear—including the fact that she had a two-year-old son, Ray Shaun, who also had AIDS—information that almost certainly came from a cop or a health care worker, its disclosure a form of abuse.

Holmes moved back to New Haven in July 1985, to take a position as a social worker at Yale New Haven Hospital. One of the only things she brought with her from Long Island was a newspaper clipping about Locklear. Not long after arriving, Holmes learned that she had started her new job just six months after Locklear’s death, ostensibly from AIDS-related complications, and just two months after Ray Shaun died at Yale New Haven. The death of the cherubic little boy in particular had “really had an impact on the nursing staff, on the social workers,” Holmes said, “but not everybody. I think some people were still afraid, physicians included.”

Press reports of a “rare cancer” spotted among gay men had first surfaced in 1981. The term “AIDS” had been adopted in 1982 (replacing “Gay-Related Immune Deficiency”), and in 1983 the Centers for Disease Control (CDC) indicated that the condition could not be spread through casual contact. When Holmes began working at Yale New Haven, much about AIDS remained uncertain, including precisely how it was transmitted. Only in the first days of 1985 did the CDC clarify that AIDS was caused by a virus, which would not acquire a formal name (HIV) until the following year.

Because of the fear of contagion, hospital staff had to specifically ask to work with AIDS patients. Holmes asked. She ended up devoting much of her first few years at Yale New Haven to working with small children who’d been born HIV positive. In those early days, hospital staff were still expected to put on “space suits”—masks, gowns, gloves—before entering the rooms of those with HIV or AIDS (the distinction between the virus and the condition caused by it still wasn’t widely understood). But Holmes was one of many who quickly realized that she could safely take off the space suit, which she did as soon as she closed the door behind her. The work was tough—medically, because there was no cure, and psychologically, because there was no cure. These small children kept dying. Even the ones who got better couldn’t always be discharged. Often, their only family members were also hospitalized, and foster homes wouldn’t take the children.

Meanwhile, the adult AIDS patients—the ones who could be blamed for their illness, like Locklear—were all housed on one floor. It was the “loneliest floor,” Holmes recalled. Patients were dying constantly, horrible deaths, sometimes quite slowly, sometimes so fast that Holmes didn’t have time to say goodbye. Once, Holmes got a call in the middle of the night; a patient in the ward had jumped out a window.

Over time, things did get better. In the late 1980s, Holmes helped to establish Yale New Haven’s AIDS Care Program, which operated first out of a cleaned-out utility closet in the hospital, but eventually got its own suite of offices. Soon, Yale New Haven set up a first-rate AIDS clinic. Local nonprofits sprang up to provide social services. By 1996, effective medications became available—at least for those who could afford them. Over the years, the dying slowed, though it never ceased, and Holmes never forgot those early days. She never forgot those early deaths. In fact, she kept a list of sorts, an archive of names.

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*

I first met June Holmes on August 25, 2017, in her office at Yale New Haven. I had just moved to New Haven to begin law school, but I was meeting with Holmes to talk about something else entirely. Like her, I had come across a newspaper article about Carlotta Locklear; captivated, I’d begun researching the story, tracking down those who’d known this woman whose name had once been printed in bold letters. Widening my circle, I began interviewing others in the community, hoping to learn about the epidemic in New Haven more broadly.

New Haven is perhaps best known as the home of Yale University, but to many that simple fact has tragic implications. The university is the city’s fount of jobs, but it was also complicit in the destruction of many of the city’s historic Black neighborhoods; Yale’s presence ensures a steady flow of capital into New Haven businesses, but it also laces the city with locked gates, dispatches armed university police far from campus, and serves as a magnet for entitled interlopers with no interest in putting down roots.

Holmes was generous in sharing her story and her recollections, but she was also cautious. After asking many questions about my intentions, she agreed to show me her files. But, she added, she would do so only if I agreed never to reveal the names of people with AIDS that I discovered in her records. (Perhaps she had Locklear’s ordeal in mind.) I agreed.

What Holmes then handed me was a peeling black binder. It was stuffed with old memos and meeting minutes, with printed-out emails and crumbling pamphlets. It also contained dozens of obituaries.

These were the AIDS patients Holmes had assisted as a social worker, or at least a fraction of them. At some point in the early 1990s, Holmes had begun saving the obituaries of her patients—carefully clipping them out of the New Haven Register and filing them away. Over the years, she accumulated several dozen, neatly stacked atop one another and tucked into the pocket of the binder.

Presented with this pile of documents, I took out my smartphone and began hastily photographing everything, capturing the documents electronically for later consideration. In the weeks and months that followed, I continued to conduct interviews and collect documents, speaking with June Holmes several more times. But it was only years later that I revisited her collection of obituaries. Upon this second, much deeper viewing, I found myself struck not so much by the information they contained—names, occupations, hometowns, ages at death—but by the information they omitted.

Of the fifty-four obituaries, just one identified the cause of death. The rest stated simply that their subject had died after either a “brief illness” or, more frequently, a “long illness.” Of the fifty-four obituaries, not a single one explicitly identified the same-sex partner of the deceased, even though surely, among this early cohort of patients, many had been both queer and partnered. Not a single one mentioned the pain, the suffering, the ostracism, the loneliness.

This was, of course, for good reason. It would have been an abominable invasion of privacy for the New Haven Register or Journal to identify a person with AIDS without their express consent—especially in the early 1990s, at a time when HIV and AIDS were far more stigmatized than they are today (though they are still quite stigmatized). Likewise, it would have been improper, even dangerous, for the newspapers to identify a person as queer without their explicit permission at a time even more nakedly queerphobic than our own, and when many of the partners of the dead were still living and vulnerable. An obituary devoid of this information is inevitably a sparer, even denuded historical document, but it is nonetheless an ethical journalistic record of death.

*

“Carlotta Locklear, a convicted prostitute suspected at one time of having AIDS, died in Yale New Haven Hospital Monday night of apparent cardiac arrest,” began the article in the New Haven Journal. Yellowed and fraying at the edges, this was the clipping June Holmes had brought with her from Long Island to New Haven decades before.

The Locklear story was big news, not just in New Haven but all across the country. The hubbub had started in the fall of 1983—early in the history of the AIDS epidemic, a time of ferocious paranoia. Connecticut authorities were enacting ever more punitive anti-prostitution policies, even as many New Haveners were taking to the streets to protest the city’s inability or unwillingness to solve a slew of murders of Black sex workers.

“Prostitutes May Carry AIDS,” screamed a front-page story in the New Haven Register on November 5, 1983. “We do not currently know whether women can transmit AIDS to men,” New Haven’s health director told the paper. “Nevertheless,” the article continued, “the public should know that prostitutes may be able to transmit AIDS to their clients.” That very week, the press reported, heterosexual female patients were showing up at Yale New Haven with symptoms suggesting AIDS.

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The news story was the result of weeks of rumors that had been coursing through the city—a sex worker knew that she had AIDS, the reporters believed, but was still having sex with clients. In the days that followed, many staff members at Yale New Haven received phone calls from reporters, desperate to learn this woman’s name. On December 9, a Yale student publication broke the story, though it obscured her identity with a pseudonym (calling her “Lana”). Speculation continued in the pages of the Register and the Journal—“More Prostitutes Show Early Symptoms of AIDS”—until, on February 14, 1984, the Register used Locklear’s full name for the first time.

The decision had immediate material consequences for her. She told the Register that she was terrified that angry clients would harm her: “I can’t even walk to a car because I’m afraid they’ll blow my head off.” The assistant state’s attorney issued a warrant for Locklear’s arrest (ostensibly for drug possession). Days later, 60 Minutes showed up to do a story on Locklear, using the pseudonym “Helen.” Shortly thereafter, the police took Locklear to Yale New Haven for pneumonia tests, and they shackled her to a bed.

Meanwhile, local business owners demanded harsher anti-prostitution policing—a demand to which the cops enthusiastically acceded. Sex workers’ rights activists across the country exchanged messages, expressing fear of coming violence. Years later, New Haven AIDS activists recalled that their hotline was flooded with calls from anxious men, terrified they’d had sex with Locklear. Former New Haven sex workers recalled that what had happened to Locklear made them feel even more isolated and at risk. Locklear’s name would ultimately appear in history books and journal articles as arguably the first famous female AIDS patient. (When, within days of meeting June Holmes, I managed to connect by phone with Anthony Fauci—then best known for his role leading the federal response to AIDS in the 1980s—he exclaimed, “Carlotta!” and told me that he recalled the press accounts and the alarm.)

It seems doubtful that such panic would have ensued if the Register had simply declined to print Locklear’s full name—thus depriving the public of a figure on whom to fixate. Many New Haveners would remember with anger that one Register reporter, in particular, had been obsessed with discovering Locklear’s identity. “One day she called me and said, ‘I know you have a woman,’ and said her name, ‘and she’s an active prostitute, and I need to know why your clinic isn’t taking actions to essentially quarantine her,’” remembered one Yale New Haven employee who worked closely with Holmes.

Locklear was not the only person whose story was recklessly sensationalized. Four years ago, the historian Richard McKay published a book recounting the story of Gaëtan Dugas, a French-Canadian flight attendant famously labeled the “patient zero” of AIDS. In the mid-1980s, Dugas became posthumously famous for having deliberately spread HIV across North America (or so the story went). “He would have sex with you, turn up the lights in the cubicle, and point out his Kaposi’s sarcoma lesions,” wrote the journalist Randy Shilts, who broke the story in his iconic book, And the Band Played On. “‘I’ve got gay cancer,’ he’d say. ‘I’m going to die and so are you.’”

It is unclear, however, if Dugas ever actually said this. “I oppose the assertion that Dugas ignored incontrovertible information about AIDS and was intent on spreading his infection,” McKay writes. The information available to Dugas during the period in “which his actions have faced the most scrutiny” was “far less stable, coherent, and self-evident than it was often later portrayed to be.” McKay argues that Dugas is best understood as one of history’s many patient zeros, including “Typhoid Mary” Mallon, an Irish-born cook who was forcibly quarantined for decades between 1907 and 1938 for apparently transmitting typhoid to those who ate her food. Such individuals often come from marginalized backgrounds and, during frightening times, are convenient objects of blame. Notably, these narratives are often marked by glaring inaccuracies; McKay found evidence that Dugas did alter his sexual practices, even as he demanded more information from a recalcitrant medical establishment.

Locklear—a Black sex worker in a heavily policed, strikingly stratified city—had ample reason to distrust public health authorities. Further, she insisted to the Register that, though she’d been tested for AIDS, the test results had yet to come back at the time her name was splashed across the papers. She was not a confirmed carrier. “They treat me like I have the plague, but I don’t believe I’ve infected anyone,” she said. After Locklear died, in January of 1985, the medical examiner listed her cause of death as pneumonia “due to or as a consequence of AIDS” even before the results of her autopsy had returned. (The results have never been disclosed.)

At that precise moment, elsewhere across the country, newspapers published the names of other alleged patient zeros. On January 5, 1985, the San Francisco Chronicle printed the full name of a thirty-four-year-old sex worker that the cops insisted had AIDS. Television cameras rolled into San Francisco’s Tenderloin district, and men looking for sex started opening negotiations with the nervous question, “Are you the one with AIDS?” One local news anchor compared this woman to Typhoid Mary, while another likened her to a “human time bomb.”

Several months later, in Houston, Texas—where a leading candidate for mayor had joked that his plan to combat AIDS was to “shoot the queers”—the story broke of a gay man named Fabian Bridges who had allegedly told his physician he would continue selling sex in spite of a diagnosis of AIDS. Houston’s health director threatened to have Bridges placed under psychiatric treatment if he caught him having sex. “I don’t think it’s a civil rights issue,” the health director told the press, which identified Bridges with his full name.

Yet, rather than encouraging Bridges to get help, the Houston police harassed him, at one point forcing him to hide in a phone booth as undercover officers repeatedly tried to solicit sex from him (in order to arrest him). Eventually, at the urging of allies in the gay community, Bridges checked himself into a hospital. Within weeks he was dead.

There are countless other such stories of people (many of them sex workers and many of them Black and brown) hounded by the cops and outed by the press. Countless other contested stories whose facts are, today, mostly unverifiable. Several are collected in The Borders of AIDS, a recent book by the scholar Karma R. Chávez. These “high-profile and sensationalized cases,” Chávez writes, “animated the creation or renewal of quarantine laws and set the stage for laws that criminalize HIV.” The first such quarantine law passed in Connecticut, clarifying public health officials’ power to, when “necessary,” isolate individuals infected with communicable diseases who pose a “substantial threat to the public health.” This law was a direct and acknowledged response to the headlines about Carlotta Locklear.

*

After June Holmes died, on August 26, 2020, the New Haven Register published her full name, though it did not specify her cause of death. She had “passed away peacefully,” the paper reported, a widely acclaimed and beloved AIDS activist.

It was Holmes’s death that led me to revisit her archive of obituaries. Now that she was gone, the meaning of her collection had changed, it seemed to me. Because virtually none of these obituaries used the word “AIDS,” the only way to identify what these people had died of was from the kind of personal information that only Holmes possessed; following her death, it occurred to me that I might now be the only person who—upon seeing any of these obituaries in the wild—would know what they meant, and what they masked.

The obituaries that June Holmes saved are, essentially, a list of names and the barest outlines of biography. They are a group of people, unconnected in life, united only by sickness and stigma and their interactions with a sympathetic social worker.

But in their silences, they contain multitudes. Many of the obituaries noted that their subjects had died in the Connecticut Hospice in Branford; this simple statement elides the years-long fight activists had waged to secure the admission of HIV-positive patients to that renowned hospice, which for much of the 1980s had refused to take anyone with HIV/AIDS. Many likewise noted that their subjects had been members of Immanuel Baptist Church; what they didn’t say was that this church was one of the premier founts of AIDS activism in New Haven, led by the indomitable Elsie and Curtis Cofield, who cofounded AIDS Interfaith Network and were influential nationwide.

From the scant details these obituaries do contain, I often find myself drawing inferences. Many of the deceased were men with no listed partners or children; one had been a choreographer and ballet dancer, another a fashion designer, a third sported a robust mustache and had previously lived in Provincetown. What had life been like for these men?

Indeed, what had life been like for those who cannot as easily be shunted into the most familiar narrative of the “gay plague,” a narrative that has always been selective and misleading? Examining San Francisco in the 1980s, the sociologist Michelle Cochrane discovered that public health officials repeatedly underreported drug use and other HIV/AIDS risk factors and overreported homosexuality; when patients were homeless or listed multiple addresses, officials nonetheless recorded that the patients lived in a gay neighborhood. By the 1990s, activists in New Haven were fighting an epidemic that disproportionately burdened the poor, the addicted, and the Black and brown residents of neglected neighborhoods, even as the public imagination remained fixated on white, gay men and their sex lives.

And so I also find myself dwelling on the painter who was a member of Teamsters Local 443; the former member of the US Olympic handball team; the former backup singer for Michael Bolton; the Vietnam veteran; the sixty-seven-year-old housekeeper at Yale; the thirty-five-year-old widower; the forty-year-old woman predeceased by a son. A few of the obituaries noted that their subjects had worked or volunteered at Yale New Haven Hospital, AIDS Interfaith Network, the Mayor’s Task Force on AIDS, or at Columbus House, a shelter for vulnerable New Haveners that assisted many with AIDS in the 1980s and 1990s and beyond. Two obituaries—separated by more than a year—contained the stories of a husband and a wife.

Reading this archive almost three decades after its compilation, I cannot help lamenting the omitted context even as I am grateful not to find other obituaries as invasive as Locklear’s. No doubt it was right to exclude certain personal information and cause of death, although these decisions were made in an atmosphere of stigma and fear. No doubt many journalists failed (and fail) to cover AIDS more deeply because of bigoted assumptions. Regardless of motive, the skeletal reporting has assuredly contributed to the hazy cultural memory of the epidemic’s early years. This, in turn, has shaped the extraordinarily stunted popular understanding of the AIDS epidemic as it exists today—an epidemic that, since its beginning, has killed over 700,000 people in the US alone. I am trained in neither journalism nor public health, so my sole lodestar when it comes to assessing such reporting is this: that people with HIV/AIDS, who lack the privilege of controlling so many aspects of their lives, must control the dissemination of their stories.

Even as scholars and journalists seek to unearth histories of the marginalized and misrepresented, then, such a desire must be tempered by ethical obligations. It’s not enough to merely “tell the truth.” Indeed, sometimes it’s not right to “tell the truth,” to tell anything at all. The history of AIDS is one that many people assume they understand and inappropriately frame as a moralistic narrative of medical progress, or as a fated tragedy of liberation cut short. But AIDS is an ongoing emergency, and its history is one of poverty and prejudice and profit and neglect. Without telling the hidden histories, the misleading narratives will remain dominant. But some stories simply shouldn’t be told, at least not at so short a distance, and not without the kinds of permission that few sought from Carlotta Locklear. I want to try to retell this story, but most of its protagonists were never public figures in the way that June Holmes chose to be and Locklear became against her will. And so I will try, but carefully.

The clippings in Holmes’s archive contain the stories of a generation that died before the creation of effective medications—including several stories that, frankly, are not mine to tell.

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