Losing the True Story of AIDS


By Sarah Schulman
June 2017

I could stand here and tell you about friends of mine who are lost. But I would be abdicating my responsibility as a long-term witness to the AIDS calamity if I focused on Stan Leventhal or Asotto Saint today. As a journalist and novelist who has covered the entirety of the AIDS crisis, and (unlike many people who covered AIDS from the beginning, I am still alive) I have to say honestly that the thing we are really losing is an accurate HISTORY of AIDS, and consequentially, we are losing an accurate assessment of where we are today. The AIDS Story has been distorted from the beginning, in part because of the chaos of figuring out what the hell was going on, in part because of bias, but now these distortions are being entrenched. I want to take this time to give some very key examples.

First, we have a false origin story. Most people who know anything trace the beginning of AIDS to that New York Times article on July 4th weekend, 1981, reporting cases of what they called “Gay Cancer” in San Francisco. I think we now know enough to understand that this highly significant marker only recorded the moment when a long standing epidemic finally reached a critical mass of gay men who had access to high quality doctors who had the time and ability to actually notice and conceptualize their condition. And so, July 4, 1981 is a monument to the cruelty of the American health care system.

There are estimates that by 1981 there were already 200,000 people in the United States who were infected with HIV. And that means that many people had already died, and been dying for a long time. And others observed their deaths. So who were they? In his 1990 book The History of AIDS by Merko Gremek, he cites a study in the 1940’s that identified a group of sailors who died of a mysterious lung disease. The enterprising doctor cultured and saved their lung cells, which were identified in the 1980’s as PCP, or AIDS related pneumonia. The men also were noted to have had “anal trauma”, which because of homophobia was a euphemism for anal sex.

In the ACT UP Oral History Project, Jim Hubbard and I interviewed 187 surviving members of ACT UP New York over seventeen years. In my interview with Betty Williams, a straight Quaker who was in ACT–Up, she reflects on her work with homeless people in the 1960’s and 70’s and recalls them using two terms to identify fatal illnesses affecting homeless people: “Junkie pneumonia” which we now understand also to be PCP, killing injection drug users, poor gay men and others who were HIV infected before anyone knew what HIV was, and “the dwindles” which we now understand to have been Wasting Syndrome, a significant cause of AIDS death. So, in the 1960’s and 70’s, homeless people observed and named AIDS related conditions, but they were so separated from adequate health care in our brutal and unjust, stratified class system, that no one else noticed.

This week I heard a piece on WNYC promoting a new book about Jeffrey Shmaltz, a gay writer at the New York Times who died of AIDS. The interview did not mention that the New York Times was a major force in maintaining social indifference and neglect towards people with AIDS, contributing to the expansion of the epidemic world-wide. The interview did not mention that there were a number of closeted gay men and women at the Times who turned their backs on the gay community and on people with AIDS for years, despite our desperate pleas. It did not mention that ACT UP called them “The New York CRIMES”, that when they got their first fax machine, we faxed them a mile of black paper because of their criminal refusal to cover AIDS.


That homophobia at the New York Times meant that out of the closet journalists who wanted to tell the truth about what was happening to our community could not work at the highest levels of our profession. That out of the closet artists who made work about the reality of our lives under the epidemic, could not get their work understood or often even acknowledged, and demonstrations and zaps and experiences of people with AIDS were rarely even mentioned at the New York Crimes.

On May 21, 1990, ACT UP organized a huge and elaborate action at the National Institute of Health, called STORM THE NIH, focused on insisting that people with AIDS be allowed on governmental boards controlling treatment development and testing. Because our people were literally NOT ALLOWED IN THE BUILDING, folks with AIDS had to stand outside the gates, including many very sick people some of whom were hauled away by police wearing yellow rubber gloves, and these brave people were then arrested.

Seventeen years later, Jim Hubbard and I were invited to the NIH, National Library of Medicine to present the beginnings of the ACT UP Oral History Project. We said that the last time we had been there, we were on the other side of the gate. A woman raised her hand and told us that she was the NIH librarian, and that after demonstrators were taken away in 1990, she went outside and collected some of the left-over signs for the Institute’s archive. And then she made the bone-chilling statement that “We here at the NIH are so grateful that Dr Fauci had the insight to understand that everyone deserved a place at the table.” Jim and I were filled with disbelief. We explained to her and the rest of the NIH staff in attendance that our dead friends fought and struggled until the day they died to FORCE the NIH, AGAINST THEIR WILL, to include people with AIDS as experts on their own disease.


And when we look at the history of AIDS film and AIDS Theater, we see large-scale mis-representations and inventions embedded in the most rewarded and iconic works. Early on, the most highly praised works about AIDS told a false story of gay people being alone and abandoned by each other, without community or political organization, dependent on benevolent straight people to rescue them. For example, the Oscar winning film PHILADELPHIA, told the story of a gay man with AIDS (Tom Hanks) who needed a lawyer, so he went to a homophobic straight lawyer (Denzel Washington). Why didn’t he go to a gay lawyer? Most people with AIDS were defended by gay and lesbian or left-wing lawyers. The actual history is that people with AIDS were NOT defended by homophobic straight lawyers.


"All People with AIDS Are Innocent (Banner at the Henry Street Settlement)" The New York Public Library Digital Collections."All People with AIDS Are Innocent (Banner at the Henry Street Settlement)" The New York Public Library Digital Collections.

But in the Oscar winning movie PHILADELPHIA there is no political gay community in existence for this man with AIDS to turn to. This is a completely false rendition designed to position homophobic straight people as the heroes of AIDS because they HEROICALLY overcome their prejudices to protect the alone gay man.

At the same time there were accurate depictions of upper-class white gay men like The Normal Heart or Longtime Companion that did tell true stories of race and class-based white gay male communities heroically struggling to force the government to act, while they faced mass death. But the problem is not with these stories themselves, but that they became exclusively emblematic of an epidemic, that they only partially represented, while the stories of poor people, of women with HIV, or people of color, of children with HIV were relegated to marginalized venues like underground and community newspapers, or projects like Alexandra Juhasz and Juanita Muhammed’s videos with women of color with AIDS (now showing at The Museum of the City of New York, thirty years after their creation) or Jean Carlomusto and Gregg Bordowitz’s Cable series “Surviving and Thriving With AIDS” for GMHC in the 1980’s.

What is particularly interesting about, for example, Larry Kramer’s THE NORMAL HEART, is that while it enjoyed a very successful run and revival off-Broadway at The Public Theater, it could not move to Broadway or HBO until decades after its creation because corporate entertainment was not ready for a white GAY man to be the hero of AIDS until the epicenter of the epidemic seemed to have passed.


And while white gay men suffered, were abandoned by their society and abandoned by their families, and died because of the criminal indifference and neglect by the US government, Big Pharma, The Entertainment Industry, and – yes- The New York Crimes- some of those who survived have also contributed mightily to the creation of a false history because they are the only sectors of the community of people with HIV/AIDS who have a voice at the levels of power. We have been subjected to claims by people like Andrew Sullivan, who in 1999 announced “The End of AIDS,” because his friends had good insurance and could get medication. Yet reporters like Black lesbian hero Linda Villarosa , have documented the ongoing crisis for Black women and Black gay and bisexual men over decades. In a 2004, five years after Sullivan claimed “The End of AIDS” Villarosa wrote a two part series for the New York Times showing that the over-incarceration of Black men by white America, made Black women who wanted to have sex with Black men, more vulnerable to the virus because they faced a smaller partner pool with higher rates of infection.

For decades AIDS prevention organizations that are funded and thereby ultimately controlled by the US government and white corporations, have organized their prevention information on the false assumption that Black men who have sex with men have higher HIV rates because they don’t have safe sex, but this was revealed to be untrue when in 2015, Greg Millet (Obama’s senior policy advisor on AIDS) released a study showing that Black men are 3 times more likely than white men to have safe sex, but that – like Black women- if they want Black partners, their chances of encountering someone who is already positive are so much greater, that their risk for infection is way higher than whites. Infection rates caused by racist incarceration and racist deprivation of health care for the poor, were blamed on racist concepts of Black irresponsibility.

Just two weeks ago, Linda Villarosa published a MUST READ cover story in the Sunday Times magazine showing that in the US South, the abandonment of Black gay men is so severe, that they have HIV rates in 2017 that are higher than those of any country in the world, and yet white gay men are still producing and rewarding work that tells us that “we” as a nation have “Survived A Plague”


And these distortions are evident, even in New York City. Just last week I was told by a social worker that she has seen Juvenile HIV deaths THIS YEAR among her client base but that some of these statistics are hidden under co-morbidity because her clients, who are homeless, may have died of other illnesses that became untreatable because of their advanced HIV disease. In New York City TODAY, half of HIV deaths are diagnosed in the emergency room because our people do not have health care. And a nurse told me last week that people with HIV dementia are being classified under “psychiatric” diagnosis, again obscuring the statistics for the poor.

And finally, what about the New York Crimes? Yes they now publish articles on gay people, gay weddings, gay parenthood. Yes, they do allow writers like Villarosa to publish their pathbreaking research. But what about their on-going coverage? Columbia graduate student Ian Bradley-Perrin did an analytical survey of the Times HIV coverage in the last four years. Any of you who know anything about how stories get into the media know that most features have advanced corporate Public Relations machinery, behind-the-scenes, propelling specific stories and perspectives into print. Almost every profile of an individual, major review of a cultural work, or coverage of a trend is the product of an elaborate backstage campaign that is privately funded. So a pharmaceutical company like Gilead would have a better chance of being covered than, for example, the global trend of HIV criminalization.

Perrin found that since 2013, the Times has had 0 articles on hiv criminalization, 0 articles on the fact that half of transsexual women are HIV positive, 0 articles on adults living today who were born HIV positive 0 articles on the hundreds of thousands of Americans whose parents died of AIDS, 1 article on the specific experience of long-term survivors 3 articles on hiv and opioids, 7 articles on African Americans and HIV, and 28 articles on Prep.

What we are losing is the true history of AIDS, and for this reason, we are losing our contemporary reality.



Artwork by Gran Fury artist collective