The Whitewashed History of HIV: A Black Teen Died of AIDS in 1969

Fifty years ago, a frightened 15-year-old black youth checked into St. Louis’s City Hospital with unusual symptoms that puzzled doctors. His legs were swollen, and soon so was his entire body. Nothing seemed to work, not even seven weeks of antibiotics. Doctors suspected he may have acquired chlamydia from a same-sex partner, but the youth never said he had. For six months he continued to deteriorate, until in May of 1969 this sweet, shy teen lost his life to the disease that baffled medical personnel. His name was Robert Rayford, and he is the first known person to die of HIV in the United States. He died just one month before the Stonewall riots of June 1969, led by queer people of color, and which we honor each year with our annual June Pride celebrations.

At the time, no one knew what HIV was. It would be another 12 years before the Centers for Disease Control and Prevention reported a mysterious pneumonia and immune deficiency that had afflicted “5 young men, all active homosexuals.” Deaths started mounting in 1981, but HIV would not be identified by scientists until 1984, and it wouldn’t be until 1987 that HIV would be found in Rayford’s tissue samples. When it finally was, few noticed his story.

The CDC’s campaign Start Talking. Stop HIV rightly states the obvious, that we must talk about this virus with one another to stop it spreading and tell our collective stories to fight stigma. But, if we are really going to stop HIV, then we need to talk about how HIV continues to have a disparate impact on communities of color. We must tell the story of Rayford and so many more.

By the time Rayford’s case was identified, a different narrative about who was perishing from HIV had already begun –– focused on white gay men. But, that narrative ignores all others and is a narrative deeply rooted in racial insensitivity and injustice played out again and again in our LGBTQ community’s history.

In 1981 the CDC reported five young gay men had come down with pneumonia, the report didn’t indicate their race, which at the time meant they were all white. Two additional cases of black men, one a gay African-American, the other a heterosexual Haitian, were not mentioned at all. The doctor who wrote the report, Michael Gottlieb, told The New York Times, “Until recently, I wouldn’t have thought it mattered.”

The face of HIV became a French-Canadian flight attendant, Gaëtan Dugas. This man was vilified in journalist Randy Shilts’s book on the initial outbreak, And The Band Played On. Shilts portrayed Dugas as a promiscuous "sociopath" who spread the virus across the country. Media dubbed him Patient Zero, and the New York Post even ran a headline in 1987 calling Dugas “The Man Who Gave Us AIDS.”

The claim that Dugas was the first person to bring HIV into the U.S. was disproved by researchers in November 2016 through genetic testing, but during the 1980s the narrative was set. In pop culture, films that tackled the history of HIV, from Philadelphia to even the more recent adaptation of The Normal Heart, look at HIV through a predominantly white, gay, and male lens. Even a recent art exhibition on HIV perpetuated an almost exclusively white perspective by selecting an overwhelming number of white artists –– 88 –– compared to just nine Latinx and four black artists.

This white history of HIV neglects Rayford’s tragic experience and the fact that he is not the last black person –– or even queer person of color –– to lose their life to HIV. He was the first victim of what would become a scandalous trend in the emerging HIV epidemic: HIV’s devastating and wildly disproportionate impact on black communities, especially black gay and bisexual men.

Since the virus was discovered, black people have made up 43 percent of all HIV deaths in the United States, yet African-Americans are only about 13 percent of the U.S. population.

Black gay and bisexual men accounted for 26 percent of all new HIV infections in 2016, despite representing less than 2 percent of America’s total population. Of the 1.1 million Americans living with HIV today, almost 475,000 of them — more than any other racial group — are black. Almost 150,000 of them are black gay and bisexual men.

Rayford’s death marked the beginning of our national HIV crisis. And like so many other stories of black and brown experiences, their stories of living with HIV rarely get told. One example of our collective erasure of black and brown people living with HIV was seen in 2015, when multiple celebrities took to Twitter to congratulate Lester Holt for being the “first black news anchor” on broadcast news — forgetting former ABC World News Tonight  anchor Max Robinson, who died from complications of HIV in 1988.

Silence equals death. And too many black and brown gay, bisexual, and transgender people have died and continue to die from HIV, but their stories are not being heard. More deaths from AIDS occur today in the South than in any other region, and those deaths are overwhelmingly of black and brown people, and many are part of the LGBTQ community.

Queer people of color’s experiences with HIV matter, and when we push their stories out of view, we put these communities at even greater risk. Their stories of today must be told, or we will never get to the end of the HIV epidemic. Black men make up 38 percent of all new diagnoses among gay and bisexual men, and the CDC predicts that if trends continue as they exist today, one out of every two gay and bisexual black men can expect to acquire HIV during their lifetime. For Latinx gay and bisexual men, that figure is one of every four. And perhaps the most disturbing finding by the CDC is their recent estimate that 56 percent of black transgender women may already be living with the virus.

This Pride Month, remember and consider this: The whitewashing of queer experiences isn’t just in the narratives we see in HIV but all across media, our Pride celebrations, and in our organizations. We owe it to everyone who has faced living with and dying from HIV to take part in the struggle to stop the virus, and to do that we need to start talking, get tested, and uplift the stories of LGBTQ people of color. If we don’t, who will?

REA CAREY is the executive director of the National LGBTQ Task Force, and JESSE MILAN JR. is the president and CEO of AIDS United.