Cause of Death

Uncovering the hidden history of AIDS on the New York Times obituary page.

A red AIDS ribbon over a New York Times obit headline.
Photo illustration by Slate. Photo by New York Times and Irina_Qiwi/iStock/Getty Images Plus.

This post is part of Outward, Slate’s home for coverage of LGBTQ life, thought, and culture. Read more here.

The New York Times may be known as the “newspaper of record,” but nearly four decades ago, when the AIDS crisis began to ransack American cities, the publication’s coverage was sparse and far from dependable. The paper’s earliest archives of the period are as much a testament to the pervasive cultural prejudices of the time as they are study in bias-borne editorial neglect. News of the disease first appeared in the paper as a Lawrence Altman science story in 1981 under the famous headline “Rare Cancer Seen in 41 Homosexuals,” though it was kept off the front page until 1983, largely due to the homophobic tendencies of then–executive editor A.M. (Abe) Rosenthal.

But all the while, it had been making its way to the very back pages, beyond the science section and Altman’s increasingly AIDS-related column—with an unknown portion of the 558 AIDS-related deaths that occurred prior to 1993 sandwiched right between the Arts and Sports sections, their names inserted into unbylined obituaries, stitched between evasive phrases, obscurities, and jargon-filled causes of death. Like most obituaries, these carried the weight of individual lives, many taken too soon. But unlike other obits, they were laced with evasions—omissions effectively erasing a person’s life, effectively erasing AIDS.

Often, though, the obituary is all we have. Those who lost their lives—many of them pathbreaking artists and individuals who, if still here today, would be running our museums, our publishing houses, our media companies, opera houses, and drama guilds—died before we had enough to remember them by. To trace the stories behind such obituaries is to unearth the very voices that shaped our culture, to recover what’s been lost.

By the mid-1980s, the opprobrium of AIDS was undeniable and spreading quickly. Already coping with a paper whose coverage of the disease had been slim to abysmal, journalists now found themselves facing subjects who refused to talk about AIDS—families and sick people who felt disgraced, who declined to out themselves or those with whom they had close relationships. Rather than citing AIDS as a cause of death, the Times, by virtue of its own trepidation and that of its sources—resorted to abstruse and labored terminology. The unstated rule for concealing an AIDS killer essentially became the more iatric-sounding, the more itis-packed—the better.

Makeup artist and wig designer for both opera and television productions Charles Elsen (d.
1985) was said to have died of spinal meningitis. Kenn Duncan (d. 1986), a prominent dance photographer, who went on to capture portraits of huge stars like Lily Tomlin, Ian McKellen, and Eartha Kitt, died of toxoplasmosis. Howard Greenfield (d. 1986), who wrote the lyrics to “Love Will Keep Us Together,” which won the Grammy award for best record, as well as the lyrics for more than 450 other songs, died of heart failure. And sacred music composer and organist Calvin Hampton (d. 1984) had simply been ill for some time. “It ran with my byline, as most of my obits did not in those days,” Tim Page, who wrote Hampton’s obituary for the Times, told me. For Page, who had been hired to cover classical music but quickly became steeped in the mire of obituary writing, there seemed to be another factor at play. AIDS, as a disease, wasn’t necessarily cause for whitewashing. It was more so the connotation of AIDS—that it was a “gay disease”—which deemed it unmentionable. “I got a very smart but very fierce letter, which had been copied to my editor, saying: ‘Tim Page’s obituary for Calvin Hampton was appreciative and intelligent, but incomplete. Calvin made no secret of the fact that he was fighting AIDS.’ ”

Page was not alone. As the death toll continued to multiply, virtually every critic and culture reporter was made a quasi-obituary writer. It was a necessary move for the Times obituaries desk, as it faced an unprecedented number of deaths among people living with AIDS, most of whom were not individuals with decadeslong careers but were instead emerging figures, practicing painting, acting, or composing behind the black-boxed walls of any number of Manhattan cultural spheres. They were rarely the sort to be exhibited among the pages of Broadway playbills, nor to be shown in upscale galleries or museums. Their names were not yet public knowledge, and the details of their lives certainly did not yet exist in the trenchlike recesses of the New York Times’ filing cabinets. And so, AIDS obituaries were assigned to the critics—those whose very job it was to follow the careers of artists from inception.

One of those critics was Jeremy Gerard, who during his tenure as a theater reporter at the Times, wrote two Page 1 obituaries for individuals who died of AIDS, both of which stated AIDS as a cause of death. The first was for Charles Ludlam, a lesser-known figure of the theater avant-garde—and a playwright, parody actor, and significant player in East Village underground arts scene. And the second was for acclaimed choreographer, director, and creator of A Chorus Line, Michael Bennett. Despite a deep admiration for Bennett and his body of work, Gerard has long felt a greater sense of accomplishment for Ludlam’s obit. “He [Ludlam] had long been a favorite of the Timesculture writers … our sort of theater intelligentsia,” Gerard told me in a phone interview. “He was just becoming a larger figure in the cultural world and had been a superstar in the world of avant-garde theater. When it was announced that he was withdrawing from Titus Andronicus, I, like many people, assumed he had AIDS.”

Having indeed just withdrawn from a Central Park production of Titus Andronicus, Ludlam, in the spring of 1987, went silent. On sheer instinct alone, Gerard called St. Vincent’s hospital, the first and largest AIDS ward in New York City and virtually the only hospital treating people living with AIDS at that time. “I asked for Charles—and to my astonishment, they patched me right through to him.” By Gerard’s account, Ludlam was optimistic that he would get better. But Gerard thought differently. “It was pretty clear to me—he sounded terrible.”

Later that May, Gerard received a call from Ludlam’s publicist announcing that he had died of pneumonia. It was true—to an extent. HIV/AIDS diagnoses often resulted in a defenseless immune system, and the principle target, more often than not, was the lungs. Ailments such as pneumonia and lung cancer, along with the more indiscernible, meningitis, toxoplasmosis, and the ever-evasive long illness, then, became cryptographs for the unspeakable, the contemptible. Ludlam had died of pneumonia—pneumonia resulting from AIDS.

Well aware of the cover-up taking place, Gerard demanded the truth. “I said to the publicist, ‘Please don’t do that, don’t lie about this. It’s too important.’ And he told me, ‘This is what the parents want, so it’s the way it’s going to be.’ ”

Determined to publish an accurate cause of death, Gerard contacted Ludlam’s parents himself. For what seemed like a matter of hours, he went back and forth with the Ludlams and their lawyer, desperately attempting persuasion, hopelessly coming up against the same, ostensibly impenetrable wall. “They were working-class Catholics from Long Island, as far as they were concerned, their son had died a shameful death.” But Gerard wanted to tell the truth. Charles Ludlam was a massive figure in the realm of avant-garde theater, and rising ever higher in more mainstream scenes. He had only just begun to reach his creative peak—that summer, he was supposed to begin filming for his first starring role in a feature film. Already an inimitable artist, Ludlam was on the verge of something even greater. For Gerard, hiding the cause of death would not only be false reporting but would further enable the stigma of AIDS.

“Charles didn’t deserve that,” Gerard paused, then delivered an impassioned, yet sober plea, the same, I imagine, he’d issued to Mr. and Mrs. Ludlam 40 years earlier: “Charles deserved nothing but acclaim for what he had accomplished in the theater. His loss was a tragedy.” Both parties hung up the phone. By Gerard’s account, he had failed.

“And then,” Gerard’s voice beamed with the memory of surprise, “about 15 minutes before my deadline, I got a call back from the lawyer.” The Ludlams had changed their minds.

On Friday, May 29, 1987, Jeremy Gerard’s obituary for Charles Ludlam ran on the front page of the New York Times. The first obituary that named AIDS as a cause of death to run on Page 1, Ludlam’s was an unprecedented intervention, intimating the pervasiveness of AIDS in the arts community, untangling the artist’s shifting battle with the notoriously erratic illness, expatiating the indiscriminate quickness of a disease still largely a mystery—and doing so all before the jump line. It was a clear journalistic victory, and yet, an astatinelike rarity.

For years, significant and even secondary players in New York’s many underground arts scenes had been dropping like flies with little to no media recognition. Klaus Nomi, a German-born opera singer and self-identifying “alien” who first came to the attention of New York creatives in 1978, was one of the earliest known victims of AIDS in the arts community. With his eyebrows painted like a Japanese Kabuki robot, face powdered alabaster white, and voice soaring at a boys’ choir range, Nomi broke all the rules. In 1979, he performed “The Man Who Sold the World” alongside David Bowie on Saturday Night Live. In 1981, he released his first self-titled album. Later that year, he began donning baroque-style, sky-high collars—supposedly to cover the black-and-blue lesions that were creeping their way up his neck. And on Aug. 6, 1983, he died of AIDS. “Klaus Nomi was really the first,” Kestutis Nakas, who had been a friend of Nomi’s, told me with quivering pause. “He was the first that we all knew who had publicly died of this new thing, this new disease.”

When Klaus Nomi died, the now bygone East Village Eye, a monthly culture publication that ran from 1979 to 1987, published a short and whimsical tribute. It read: “Klaus Nomi appeared on the NYC scene suddenly, leaping from his spectacular debut at the New Wave Vaudeville show (where the astounded audience had to be told repeatedly that the voice was truly live) to spearhead a futurist movement of militantly fashionable avant-misfits. … He was tortured by a disease whose myth exploded through thoughtless babble and media saturation.” It was one of the first of many tributes to be published in queer and alternative publications like the Eye or the New York Native, printed during a time when mainstream media outlets, particularly the New York Times, were beginning to face criticism for their lack of reporting on AIDS

Despite a lack of reporting on the epidemic, the Times still ran obituaries for people who had died of AIDS, one of the first being that of Paul Jacobs, an admired pianist and harpsichordist of the New York Philharmonic. Jacobs and his many concertos and performances had been covered extensively by the Times since 1951, when, as a recent graduate of the Juilliard School, he made his official New York debut. For the past three decades, nearly every music critic at the Times had written, in some capacity, about Jacobs. But it was Harold C. Schonberg, the first music critic to win the Pulitzer Prize for Criticism, who was tasked with writing Jacobs’ final review:

Paul Jacobs, the pianist and harpsichordist of the New York Philharmonic and an internationally respected authority on contemporary music, died in his New York home yesterday morning after a long illness. … Surviving is a brother, John Jacobs, a market researcher of Bedford Hills, N.Y.

Although the cryptic, “a long illness” would eventually become a detectable cipher for AIDS, in the case of Jacobs, the crafty vernacular was still so new. For many, there could be no telling how this man died. A few days after Jacobs’ passing, the New York Native, at the time a popular gay newspaper, published a very different obituary:

Paul Jacobs, pianist and harpsichordist for the New York Philharmonic and renowned authority on 20th-century music, died on Sunday, September 25, after a long bout with AIDS. He was 53 years old. Although the New York Times obituary made no mention of his sexual orientation and attributed his death to “a long illness,” Mr. Jacobs was an openly gay man who wanted the nature of his illness to be a matter of public record. … He is survived by his brother, John, and by Paul Levenglick, his lover of 22 years.

The Native’s obituary, itself a quasi-analysis of the obituary in the Times, had not only named AIDS as Jacobs’ cause of death but also identified Paul Levenglick as his partner.
“It was really clear back then that there were two things at work in the New York Times obituaries,” Vanessa Gould, filmmaker and director of the documentary Obit, which chronicles the daily lives and responsibilities of New York Times obituary writers, told me in a phone interview. “Not only was the cause of death not stated, but the fact that somebody was gay wasn’t even written about, so there was a lie about the way they lived and a lie about the way they died.” The preclusion of a person’s sexuality wasn’t always a cardinal offense. For many people living with AIDS, particularly those of an older generation, their love lives were private information, something they preferred to keep to themselves. But there were others living with AIDS, like Jacobs, who made no mystery of their sexuality, nor of their relationships.

In many ways, Jacobs’ obituary in the Times portended a pattern of secrecy. But it also prophesied a decade filled with obituaries, a decade of death—death from sex, from needles, from exchange of fluid and transfer of blood, death by stranger, by lover, by friend. “It was like cancer all over again,” Charles Hamlen, the founding director of the AIDS nonprofit Classical Action, told me. Hamlen, who passed away at 75, just months after our interview, lost his own partner to AIDS in 1988. He established Classical Action in 1993 in response to the massive impact of AIDS on the classical, jazz, and opera communities. “I remember when I was 13 or 14, a close family friend had died of breast cancer and it was very hush-hush. You couldn’t mention that word—cancer. That’s how it was with AIDS.”

Well into the late 1980s, the disease, which had by then killed tens of thousands, was still not given much attention in either medical or political communities. In April 1987, President Ronald Reagan delivered his first major speech on AIDS, touting increases in federal spending for research and education, which had been amended by Congress, after he and his administration had requested just half the congressionally altered amount. In the New York Times, obituaries continued to run with obscure and elusive causes of death.

Wayland Flowers (d. 1988), one of the first openly gay mainstream entertainers and a ventriloquist who, with his puppet, Madame, became one half of a famed 1970s comic duo, was said to have been “suffering from cancer for some time.” Amanda Blake (d. 1989), the actress who portrayed Miss Kitty Russell on Gunsmoke, was originally said to have died of throat cancer. Three months after her death, the Times printed a statement from her doctor, saying that although she did have throat cancer, she had actually died of AIDS-related complications. Alvin Ailey (d. 1989), a black choreographer and establishing figure in the world of modern dance whose Page 1 obituary attributed his death to “a long illness,” had, according to his doctor, died of “terminal blood dyscrasia, a rare disorder that affects the bone marrow and red blood cells.” AIDS, although more widely discussed and recognized, was still very much viewed as an implacable and stigmatizing death sentence, something to hide from one’s mother, something to erase from one’s legacy.

The Times had begun to institute a new obituary policy whereby the cause of death had to be formally attributed to a family member, spokesperson, or overseeing medical professional. “The way it finally started to change was that we would have somebody who was not at the Times state the cause of death,” said Tim Page, “In other words, we would say ‘According to so and so’s cousin, lawyer, mother, etc., so and so died from Acquired Immune Deficiency Syndrome.’ ” Though an earnest approach, the new protocol did not put a stop to the problem of circumventing AIDS, particularly when it came to getting accurate information from close relatives and loved ones.

“Oftentimes family or friends can be your least good source. Perhaps they have reasons to withhold or shade certain bits of information, so they might not tell you the cause of death because it’s embarrassing,” Chuck Strum, who oversaw the obituaries desk at the Times from 2001–06, told me. “Even now, things like ‘AIDS’ or ‘Cancer’ are considered to be dirty words in many obituaries.”

Still, the face of AIDS was beginning to change. The observable quotient of dying people no longer appeared to be exclusively gay—nor male, nor white, for that matter. Pornographic actors, sex workers, heterosexual men, women—both gay and straight—transgender people, and intravenous drug users were dying, maybe not as readily or as noticeably, but dying just the same.

In March 1987, former playwright and novelist Larry Kramer, having exited his directorial post with the Gay Men’s Health Crisis four years’ prior, was asked to speak at the Lesbian and Gay Community Center in New York City as part of a rotating speaker series. When it was his turn, Kramer posed a question to the audience: “Do we want to start a new organization devoted to political action?” Two days later, in the same West Village location, approximately 300 people met to form the AIDS Coalition to Unleash Power. Its mantra, Silence=Death, was as unforgiving as its tactics. In the 2012 documentary United in Anger: A History of ACT UP, a video clip from the organization’s early days showed Kramer arraigning three men as the chief enemies of AIDS: Reagan, New York City Mayor Ed Koch, and Abe Rosenthal of the New York Times.

Around the same time that ACT UP was beginning to take shape, the Times underwent significant staff and policy changes. Max Frankel, who had overtaken the executive editorship from Abe Rosenthal in 1986, was signaling a desire to change the paper’s approach to gay issues, starting internally, with their very own. In a 1992 article for the Advocate, titled “Out at the New York Times: Gays, Lesbians, AIDS and Homophobia Inside America’s Paper of Record,” journalist Michelangelo Signorile wrote:

As soon as Rosenthal retired in 1986 to become a twice-weekly op-ed columnist at the paper and Max Frankel took over as editor, the walls of repression came tumbling down. … “I knew they had a hard time,” recalls [Max] Frankel, “and I knew they weren’t comfortable identifying themselves as gay.”

Frankel would also take the lead in updating the Times’ style guide to allow for use of the word gay. Things were beginning to change. But for members of ACT UP, the Times’ past transgressions were unforgivable. And long after Rosenthal’s departure, Kramer remained unrelenting in his attacks on the paper.

The growing presence of ACT UP and other activist and fundraising groups, including the Gay Men’s Health Crisis, amfAR, and a host of smaller organizations all operating without any federal funding, signaled a paradigm shift. Suddenly, there was a fight—a fight against the individuals, organizations, and administrations that remained silent, perpetuating the epidemic. Many people who’d been living with AIDS felt a new sense of purpose, often treating their own deaths as occasions to educate, inspire, or just simply come clean.

For example, Max Robinson, a co-anchor of the ABC News weeknight program World News Tonight and the nation’s first black network news anchorman asked that in his death, his family reveal that he had AIDS so that, according to the Los Angeles Times, “Others in the black community would be alerted to the dangers and the need for treatment and education.” When Robinson died in 1988, his obituary in the New York Times fulfilled his postmortem request: “In accordance with Mr. Robinson’s wishes, his family requested that his death be the occasion for emphasizing the importance of education about AIDS.” It was an utterly momentous act—a signal to both black and AIDS communities that the stigma of the disease could be shattered, that is, if enough people willed it.

In 1992, Arthur Ochs Sulzberger Jr. succeeded his father as publisher of the New York Times. Upon assuming his new role, the younger Sulzberger, a considerably more progressive child of the 1960s, announced to the Times staff, “We can no longer offer our readers a predominately white, straight, male vision of events and say we’re doing our job.” Under Sulzberger’s leadership, the Times “Wedding” pages were changed to “Weddings and Celebrations” to include unions between gay couples, LGBTQ staff members were no longer as afraid to come out, and AIDS reporting, in both the paper and the Sunday magazine, increased exponentially—in large part due to the efforts of reporter Jeffrey Schmalz, a true Timesman and one of the paper’s first openly gay reporters, not to mention the only reporter to ever make AIDS his primary beat. He died in 1993, weeks before his final essay, “Whatever Happened to AIDS?” ran in the New York Times Magazine.

In his departing treatise, Schmalz was bold and unrelenting, confronting a killer that had long rendered the American people—including its political and social leaders—numb to its carnage. For Schmalz, the story of AIDS was already beginning to cycle back to what it had been in the beginning: a science story, a story of mere number, statistics, and reports. But it should have been, he insisted, a story of individual lives that had too long been stuck in states of precariousness.

In spring 2018, the New York Times editorial staff began engaging in a self-imposed intervention, particularly surrounding the paper’s early coverage of AIDS and the community of gay men that the disease demolished. An online piece written by six Times reporters began, “The New York Times had a spotty record of covering the AIDS epidemic in the early 1980s—and gay culture in general.” In March, the Times launched Overlooked, an obituary project for women whose deaths were unmarked in the Times obituaries pages. The project, which reinstates the significance of the obituary as “a testament to human contribution,” has published ex post facto obituaries for a number of misremembered women. While these recent attempts at reparative journalism might work to recuperate the past, they do not absolve what’s already been done. They do not eclipse the existence of a disease that still persists today. But they can and should signal the media’s responsibility in writing the future: of AIDS reporting, of LGBTQ reporting, and of obituary writing.

At the Times, accepting this responsibility has meant hiring reporters to multiply the work Jeffrey Schmalz once did almost entirely on his own—to tell the stories of their peers, of themselves. There is an accountability that comes with documenting a life—whether that life is a person of color, a woman, a trans person, a drug user, or a sex worker. And though that accountability is not always respected or acknowledged, it will always be there as a reminder that everyone should be recorded into history exactly as they were, even in death.