In 1969, 16-year-old Robert Rayford died of what was confirmed almost twenty years later to be HIV-related causes. This summer, writer and organizer Theodore (Ted) Kerr went to Rayford’s birthplace, St. Louis, to learn more about Robert Rayford. While he was there, Kerr created a series of simple collages: Images of people and objects related to the response to the ongoing crisis are placed on top of an image of Rayford’s childhood home, which Kerr screen-grabbed from an archived ABC news interview from 1987.

While in St Louis, Kerr worked with writer Maurice Tracy and writer /artist Joss Barton to create, WISH YOU WERE HERE, a letter writing event for Robert Rayford, Michael Brown and Michael Johnson. Below, Barton interviews Kerr about the collages, the context in which they were created, and uses the images as topics for discussion.

Joss Barton: What brought you to Saint Louis?

Ted Kerr: I am at Union Theological Seminary where I am studying Christian Ethics and HIV. As part of that, I did a summer internship organized by the school and the amazing Charlene Sinclair. I was placed with an amazing organization called Doorways, which works to connect people living with HIV who are experiencing homelessness with housing, and other supportive services. They have been doing the good work since 1988, which is early; long before there were studies showing that housing was one of the best ways to reduce the harm of the epidemic, Doorways was in action.

JB: Why did you want to do work and research around HIV and AIDS in St. Louis?

TK: It was important for me to come to St. Louis because it is the home of Robert Rayford. At 16, in 1969, he died of what was confirmed in 1987 to be HIV related causes, making him the first AIDS related death that we know of in North America. He was a black teenager who checked himself into the hospital because of intense swelling in his lower body, and 16 months later he was dead. Even in the AIDS world, his story is largely unknown and I wanted to learn more about him.

JB: What were your preconceptions before coming here?

TK: I was excited to come. I'm from Edmonton, AB, a mid-sized northernish city on the Canadian prairies, that has as it's motto, "World Class City." So I guess you can say I am accustomed to somewhat neglected mid-continent cities.

Before I arrived, my friend, historian Julie Golia, raved about the Missouri History Museum. So on my second night in town I made my way from Dutchtown, where I was living to Forest Park to the museum. And Julie was right, the place is fantastic. A friendly docent told me all about the 1904 World Fair in a way that informed how I understand the city. But I left the museum devastated. Not only was there no mention of Robert, the only mention of AIDS was an ACT UP t-shirt suspended above the LGBT section in the History of St Louis exhibition. This not only re-enforces the idea that AIDS is just a gay disease, it fails to include an important part of the city and state's history. Any time I found myself in a Louis bookstore this summer, I would scour through the local section, specifically the history and trivia books, looking for Robert or the role the city plays in the history of AIDS. I never found one mention. The only organization I found in the city that laid claim to Robert was The LGBT History Project who list Robert on their HIV/AIDS memorial list. I think it is a sweet gesture and yet I feel a certain way about it. He didn't claim gay identity. In interviews with doctors at the time he spoke only of female partners. Maybe I’m being overly sensitive but I want to be thoughtful around Robert's identity, taking the lead from him in his representation.

What has frustrated me early on about the lack of representation around Robert is that we are missing a chance to honor his life and death by making connections with what is going on right now in the city. 8 miles north west from the house on Delmar where Robert grew up is Canfield Drive where Mike Brown was murdered. A little over 100 miles to the east is the prison where 23 year old Michael Johnson has begun his 30+ year sentence on inhumane HIV criminalization charges.

As a friend helped me see, for activists in St Louis, Robert's story is about both the persistence and proximity of anti-black racism throughout recent history. Thinking about Mike Brown, Robert, and Michael Johnson, St. Louis is an epicenter for the national conversations we are having around race, systemic oppression and health. I see this in the good work coming out of Ferguson and I saw it whenever I was at the infamous Mocabe’s cafe.

JB: Did you know about Michael Johnson before you came here? How did you hear about his case?

TK: I first read about Michael in Steven Thrasher’s epic Buzzfeed article. After that I started seeing how Michael’s situation was impacting my friends. HIV Criminalization went from this abstract evil for many of them, to a concrete barrier to life. The Counter Narrative Project, an organized group of black gay men, released a statement and one line in particular really made me emotional: “Michael Johnson is a part of our community and he is not disposable.” Like, goddam. We know things are horrible when folks have to tell others that life is not disposable.

JB: I remember learning about a young black wrestler from Lindenwood (a county near St. Louis) becoming arrested for HIV exposure back in early 2014 and being incredibly upset that we still lived in a society that saw people living with HIV as criminal and inherently bad or dangerous people.

TK: His case hit home, even more so for those who went to the court house during the trial. While in St. Louis I met folks who made eye contact with Michael, and who saw the accusers. And while they all have their own stories to tell, what is clear is that the tragedy of Michael’s arrest, trial and imprisonment is getting folks to take action. There is a close knit group of activists in Kansas City and St. Louis who are working together to raise awareness of Michael’s case and working on a systematic level to end HIV Criminalization. In speaking with some of the organizers, what becomes clear is that they have to start at square one when it comes to HIV stigma. So many cultural advances made in the late 1980s and 1990s have been eroded and people are as ignorant as they ever were and this is making criminalization works. This summer another man in the St. Louis area was sentenced to 30 years in prison on HIV Criminalization charges and another guy was arrested an an attempt to not disclose. This is scary.

And of course when I think about Michael, I think about Robert. Here are two young black people living with HIV, one forgotten and neglected by history, the other locked up. There was a time this summer I was feeling hopeless and it was coming through in the work. I had written some early promotion material for the event you, Maurice and I did called WISH YOU WERE HERE and in it I was writing about death and prison as if they were the same thing. In a chat with Eric A. Stanley, activist, he reminded me that prison and HIV Criminalization are not permanent. We can work to free Michael and end criminalization. And we can work to ensure people know about Robert. Death has taken Robert and Mike Brown away from us. Michael Johnson’s fate is not sealed. And actually when we engage in art making and letter writing and community building we see that we can change things for the better.

JB: I don't think any conversation on HIV/AIDS activism could be considered accurate without acknowledging the role of art and creative political action. As a writer and artist I may be biased but when looking at how we dismantle systems of oppression—like HIV criminalization, stigma, transmisogyny and transphobia, and the degradation of black lives—art can't just be an afterthought to liberation. It has to be front and center with every tool and resource we fight with. I love that these images you've created are doing that, bridging these narratives together in a way that brings us empathy and makes me think of the Gran Fury statement: ALL PEOPLE WITH AIDS ARE INNOCENT.

TK: Yeah, if my years at Visual AIDS taught me anything it was that art is a powerful way for people to exist in the world and make sense of it all. But also, art is a way in which we see that which seems unseeable.

JB: Speaking of which, Robert Rayford's unseen narrative is present in each of these images, and it echoes all the stories that go untold when it comes to the ongoing epidemic in the US.

TK: That was something that was on my mind a lot this summer. I bought a bike while I was in St Louis and I rode it everywhere, often thinking about what Robert saw when he was alive. He came of age at a very interesting moment in history. In St Louis the Arch was being built; Percy Green was protesting the lack of black workers on the project; Ivory Perry was staging die ins to raise awareness of police brutality; and Bertha Gilkey was organizing the first tenants organization. And of course a lot was going on nationally. Rachel Carson’s “The Silent Spring” was printed in 1962, The March on Washington for Jobs and Freedom was in 1963, Anti-War activism started in earnest around the mid 1960s, by the late 60s Angela Davis had joined the black panther movement, Malcolm X was assassinated in 1965, and in 1969, the year Robert died, Dr. James Cone published, “Black Theology and Black Power”, which brought together church and the black power movement giving rise to the Black Liberation Theology.

Robert’s life and death are wrapped up and related to all of these things and when we don’t tell his story we miss an opportunity to make the connections. Riding my bike down Broadway dodging baseball fans after a Cardinal game, I would look at the arch and wonder if Robert and his brother George would get on some rooftop and watch the skyline change before their very eyes.

JB: How do you make sense of the silence around Robert’s life and death, and how did it impact your work in St. Louis?

TK: I can’t explain yet what a huge impact not telling Robert’s story has on the past, present and future response to AIDS. In almost all the movies, books and exhibitions done around HIV/AIDS they almost all begin with some sort of montage of early 1980s news clips about the epidemic, often citing the New York Times July 3, 1981 headline that reads: “Rare Cancer Seen In 41 Homosexuals.” I can quote the fucking headline by heart. And yet no one can quote the October 25th St. Louis Post Dispatch headline that reads, “Area Teen May Have Died From AIDS- in 1969.” And none of the movies and I think none of the exhibitions or books deal with Robert’s life in any meaningful way. This means something. As the ethicist Traci West says, ethics form with where the story begins. As long as we keep telling the story starting with gay men and our behaviors as gay men, we are never going to be able to look at and change the racist and biased systems that impact health outcomes.

So in terms of thinking through how we understand AIDS I wanted to take a few pivotal moments in the ongoing AIDS movement and foreground them with Robert’s home, the place where the first person we know died of AIDS in the US lived.

JB: If these pieces do anything I hope they bring Robert's story to the front of the fight to end HIV/AIDS and remind us that if we aren't looking for ways to care for and support black and POC folk then we are failing.

TK: Yes. I like that you are talking about systemic change. That is how I feel when I am thinking about Robert and his impact. This is not about replacing Patient Zero with Robert but instead about including Robert in his proper place in history and changing the structure of how we think, feel and act when it comes to HIV/AIDS in the US.

JB: The image of Gaetan Dugas is pretty poignant considering that for years he was labeled AIDS' Patient Zero, a label that turns out to be false.

TK: Yeah, so the same October 1987 week that the headline ran about Robert, St. Martin’s Press released a press statement about an upcoming publication of Randy Shilts’ book, “And The Band Played On” focusing on “Patient Zero,” a myth based on a real life person, information from the CDC, and Shilts’ own creativity. Many news outlets ran with the story, including the New York Post which had as its front page cover story headline: “THE MAN WHO GAVE US AIDS.”

JB: Looking at Robert's postmortem HIV diagnosis which alerts us to the fact that the virus was circulating before the 1970s and 1980s, I find myself thinking about how we have created a mythology around HIV that has never been done to any other illness in human consciousness.

TK: Is that true?

JB: I think so. I mean, yes, I can imagine during previous plague, communities faced with the immediate realities of dying and the existential effects of mass death familiar things occurred: scapegoating, stigma, witchcraft, burial ceremonies, profit. But something is different now. In an age of unfettered global capitalism culture, HIV has made some people very rich, and many people very desperate. When I've written and produced art around HIV from experiences as a queer trans woman, I'm creating honest narratives that bring justice and in creating those I am constantly coming up against HIV mythologies in which I can’t see myself, or my friends living with the virus.

TK: Right. Agreed. HIV is in a special league when it comes to how the history is being told, who is being left out, who is the most harmed and the need to “fight” it and find an enemy within it. Mythology is such an interesting way of thinking about it. I remember when I was in the St. Louis downtown library when I made the connection that news of Robert’s HIV-related death and Patient Zero had landed in the media the same week, it dawned on me that the US public was given two AIDS-in-the-US origin stories: one about a promiscuous gay flight attended that confirmed what the mainstream culture was saying about HIV/AIDS, and one about a black teenager from Middle America whose life and death raised more questions than answers. I’m not surprised which story went viral, so to speak, and which one didn’t. Mythology is often more powerful. But I am mad. And I am inspired to get people to work with me to correct it. I am trying to show the impact the lack of traction Robert’s story got while highlighting what has happened because the myth of Patient Zero circulated. The stories we tell matter, and impact the actions we take. Like, can we see the impact of the myth of patient zero today. HIV Negative people are being given subsidized access to PrEP, while people living with HIV are increasingly being criminalized and 40% don’t have access to meds. In some ways, it seems like parts of the global response to AIDS is more invested in caring for HIV negative people, and containing HIV positive people.

JB: Speaking of PrEP, the Truvada Whore Image begs the question, are you a TRUVADA RYDR?

TK: Ha! I am HIV negative and I am not on PrEP. But can I still be a RYDR? But for real, I think PrEP is good and all people should be given the information, access and opportunity to be on it if that is what they want and need. People need to be able to make choices to take care of their lives! I used the image of the shirt because I think Truvada and the discussion around it has re-engaged people in HIV talk in ways we have not seen in a long time. It’s sad to me how BASIC the conversation often is though. Can we stop fighting about if it works? It works! Now let’s talk about what does it mean, and how do we get it to people who need it and want it.

I think a legacy of the myth of Patient Zero, or more broadly what Cindy Patton would call the “queer paradigm” around AIDS, is that if you are a gay man in a major city, PrEP is not so hard to get. But if you are anyone else it can be difficult. So let’s think about who the Robert Rayford's of the US are today? In the documents that survive about Robert he self describes as a male who likes females. Who is looking after sexually active black teens in the midwest? Who is telling a them about PrEP? If they are gay, maybe someone is, but if the kid presents as straight they may never hear about PEP or PrEP, or think it is not for them. And that is a damn shame.

JB: Speaking of damn shame, did you see the picture from the now infamous PrEP Dinner? (http://blogs.poz.com/peter/archives/2015/12/the_prep_dinner.html) I can respect many of the men involved in this letter and their history with GMHC, ACT UP, and the overall legacy to end this plague, but when I read their intent to speak for transwomen and when I see that they ARE ALL WHITE GAY MEN, I want to scream, and then break something, and then drink a stiff vodka cocktail because in terms of solidarity and concern for my well being both emotional and physical, cis gay white men as a demographic are generally the last to give a fuck about me or my sisters or my black queer family.

TK: I know it is a big deal that Larry Kramer changed his mind on PrEP but I think this photo is less about current AIDS activism and more about the production of images and the march towards AIDS culture canonization. The first line of the related text says it all: “A little AIDS history was made Monday night.” To which I want to ask, whose AIDS? whose history? And of course, the good questions everyone asked: Where is everyone else that should be part of this conversation? Why weren’t they invited?

JB: Exactly. When you look at the history of ACT UP and do the research you see a lot of examples of solidarity and intersectional work between folks fighting for their lives and the lives of their communities; “United In Anger” comes to mind. Has that kind of work disappeared or has it just changed its framework in some way? I'm curious because as a working-poor 29-year old transgirl of color, writer and artist, I can't seem to find or feel it.

TK: Yeah, intersectionality has long been at the heart of AIDS activism. At a community discussion earlier this year, Kelly McGowan spoke about how she hadn’t realized she was an AIDS activist per se until OCCUPY happened, and she shared some of her stories with young activists. Mirroring back to her own experience, the activists showed Kelly that while she thought she was just fighting the good fight on all fronts—for affordable housing, within the Latin American freedom movement, etc.—AIDS was not only part of what she was working on, as an issue it brought people from different movements together. This is something that Tamar Carroll illustrates powerfully in “Mobilizing New York: AIDS, Anti-Poverty, and Feminist Activism.”

In terms of good work happening, in St. Louis I think about the work of Williams and Associates and Rustin’s Place, organizations that work within communities of color to provide health and cultural services. I also think of the work being done internally within the #blacklivesmatter movement where people are having tough conversations around gender, sexuality and health disparity. Those conversations don’t always make it to our Facebook feeds but as you know better than I, they are happening. Good people within the movement are saying to their fellow activists, “What about HIV?” and are raising questions about the disparity around the positive rhetoric espoused about trans folks, and how trans folks are actually treated at some meetings and protests.

And in New York, VOCAL and QUEEROCRACY do great work and I think it is only going to ramp up in the new year.

And to bring this all back to Robert, I think if we take seriously the issues his life and death bring up, we can change AIDS activism for the better. His story is about intersectionality, and begs us to look at AIDS before AIDS for answers on how to go forward. If Robert can teach us anything it is that, time is not a line.

JB: What is next?

TK: For me or for Robert? For Robert, I would love to see activists and people across St. Louis and the world talking about him, honoring him. I would love to see the AIDS Memorial Park which is located at Doorways to be renamed after Robert and I would love for him to be represented in the Missouri History Museum.

As for me, this year I gave a talk on Robert at an amazing gathering at the University of Tucson called Disrupting AIDS Discourse put on by Adam Geary. And much of that presentation will be informing a workshop I am giving at the Dresden Hygiene Museum this January for a residency I am doing for their large exhibition AIDS: Based on a True Story, curated by Vlad Cajkovac.

But selfishly, what I most want for the future is to meet someone who knew Robert, and to find a picture of him.

Joss Barton is a writer, photographer, journalist, and artist documenting queer and trans* life and love in St. Louis. She was a 2013 Fiction Fellow at the Lambda Literary Foundation's Emerging LGBT Writers Retreat and was an exhibition artist for Nine Network's 2015 Public Media Commons Artist Showcase. She is also an alumni of the Regional Arts Commission's Community Arts Training Institute. Her work has been published by Ethica Press, Vice Magazine, HIV Here & Now, and Vetch Poetry: A Transgender Poetry Journal. She blogs at www.newamuricangospels.tumblr.com.

Canadian born Theodore Kerr is a Brooklyn based writer and organizer whose work focuses on HIV/AIDS. He was the Programs Manager at Visual AIDS and is currently at Union Theological Seminary looking at Christian Ethics and HIV/AIDS.