Earlier this year, the American Journal of Public Health published an editorial that includes Robert Rayford, who died with HIV in 1969, on a list of gay or bisexual men. This is a mistake.
In the piece, George Ayala, Psy.D., and Andrew Spieldenner, Ph.D., write, “HIV is a story first written on the bodies of gay and bisexual men.” To support the claim, a list of gay and bisexual firsts is included, starting with Ken Horne, a gay sex worker who was retroactively identified as the first patient of the AIDS epidemic in the U.S. The list also includes the Denver Principles, a foundational document for the self-empowerment of people living with HIV, which was written in 1983 by a small handful of men at a gay and lesbian health conference in Denver.
At the end of the list is Rayford, whose positive HIV status was confirmed in 1987 when tissue saved from his body was tested.
The problem is, while we know Rayford was a Black, 16-year-old, St. Louis native, we don’t know if he identified as gay or bisexual. The only currently available insights we have come from a 1987 Chicago Tribune article in which his doctors reported Rayford confirming “sexual relations with a neighborhood girl” that also noted, “Circumstantial evidence suggests that he may have been the recipient of anal sex”; a New York Times article that year that reported, “His doctors said they thought he was homosexual or bisexual” because of this evidence; and a 1988 article in the Journal of the American Medical Association that states, according to an autopsy, there was “a possibility that the patient, who admitted to being sexually active, engaged in anal intercourse.” At this point in history, nothing about his sexual identity is conclusive—there is only speculation.
I understand the desire to include Rayford within the gay and bisexual narrative of HIV. Even without all the facts, his story may resonate deeply with many gay and bisexual people dealing and living with HIV, specifically Black queer youth and queer youth of color, whose stories are often neglected, robbed, or sanitized.
Yet, it is important we do not rob Rayford from the grave of either the ambiguity or specifics that have not yet—and may never—emerge about his life. On one hand, the power of the unknown itself is important to acknowledge. We are allowed to have secrets and be inscrutable, even in death.
On the other hand, there is so much to learn about Rayford. After years of Rayford’s life and death going largely undiscussed, there is a growing interest in him. In 2019, coinciding with the 50th anniversary of his death, many outlets, including The Washington Post and Newsweek, published articles about Rayford. Even the National Park Service dedicated a webpage to him, which is connected to City Hospital in St. Louis, where Rayford was treated.
This attention means previously lesser-known and unknown information about Rayford may become available. Within this influx, it is important we stay open to what there is to know and be nimble in receiving insight that may impact what we think we know about Rayford or how HIV emerged as an epidemic in the U.S.
We in the HIV community know that once information is shared about someone, it is very hard for a retraction to gain any sway if a correction is needed. We saw this with Gaëtan Dugas. In his book, And the Band Played On, journalist Randy Shilts and his publisher positioned Dugas as the man who brought HIV to North America. Dugas was dubbed HIV’s Patient Zero, a myth that not only played into the homophobic fears of the general public surrounding HIV at the time, but also had a devastating impact on how Dugas has been remembered.
My hope for Rayford is that he can be remembered and known for who he was, ambiguity included, and as more is learned about his life and death, an image of him will emerge through time and accumulation rather than speculation.
I say this as someone who has been researching, writing, and doing community organizing around Rayford’s life for the past six years and has seen ramifications of what happens when unconfirmed conclusions about Rayford are broadcast.
In 2018, HIV Plus magazine and the Advocate published an op-ed, “The Whitewashed History of HIV: A Black Teen Died of AIDS in 1969.” The article, written by Rea Carey and Jesse Milan Jr., begins with Rayford’s story to highlight the need for diversity within the AIDS response. Unfortunately, the print edition and an early online version of the article included a photo illustration of a young Black man that a reader could have reasonably been led to believe was Rayford. It wasn´t.
The person actually depicted in the photo illustration was Robert Rochon Taylor, an architect, activist, and chairman of the Chicago Housing Authority who died in 1957. His father was the first Black graduate of the Massachusetts Institute of Technology, and his granddaughter is Valerie Jarrett, who was a senior advisor to President Barack Obama.
Eventually, the image in the online version of the article was changed, but by then the damage had been done.
Around this time, I was in St. Louis working with the Griot Museum of Black History on an exhibition about HIV in the area and guest facilitating art workshops at a local housing organization that supports people living with HIV.
While in the city, I learned that a local health center that focuses on Black queer youth had used the HIV Plus magazine image to decorate a room in their building that they named after Rayford. Before that, a participant in an art workshop brought me a collage that featured the HIV Plus image. She had learned about Rayford through me and had been excited to share his image with me.
In both incidents, when the error of the image was revealed, the workshop participant and folks from the health center had mixed reactions. It was hard for people to believe that the magazine would publish an image of a person near the article without confirming it was Rayford. Since there is no current image of Rayford in circulation, I sensed a bit of hesitation in letting go of the idea that the man in the photo was him.
Years later, the impact of HIV Plus magazine’s error has only intensified and gone global. Now, when I Google Robert Rayford, versions of the Taylor image the magazine used for their illustration come up for numerous links, including on the Robert Rayford listing on FindaGrave.com.
In the absence of facts, people cling to available information, which makes sharing the truth, when and if it emerges, that much harder. It seems better to me to make room for questions when the unknown seems to be the closest thing to a fact available.
I thought about that this summer while I was back in St. Louis, continuing my Rayford research and working on a reported piece about HIV in the region. Among the things I learned was that the majority of people living with HIV in the area are Black men, many over the age of 50. Rayford was born in 1953. If by some miracle he had survived, he would be part of this cohort. What, I wonder, would the older Black men of St. Louis living with HIV like to know about Rayford? And what information and insight do they have that might shed light on Rayford’s 16 years on earth?
When we lean into the unknown, we make space for questions and conversations that may take us to more vital and life-giving places than speculation could ever take us.