This year marks 40 years since the first known HIV/AIDS diagnosis in the United States. However, researchers believe the first cases of AIDS occurred before 1981, as evident in the death of St. Louisan Robert Rayford in 1969.
Rayford died of pneumonia, and doctors at the time misdiagnosed him as having lymphedema. But nearly two decades after his death in 1987, an analysis of his tissue samples revealed that the 16-year-old was exposed to HIV and that his death could have been caused by an AIDS-related illness.
The Contemporary Art Museum St. Louis will highlight that history tonight. As part of its annual World AIDS Day observance, the museum is putting together a program called Day With(out) Art: Enduring Care to showcase the arts community's ongoing struggle to make the disease and its effects visible to the larger community.
The national organization Visual AIDS in 1988 hosted the first Day With(out) Art event to bring attention to the issue. They encouraged museums to close or cover works of art made by artists living with HIV to emphasize that if the AIDS crisis went unaddressed, the art world would suffer.
Joining host Sarah Fenske on Wednesday’s St. Louis on the Air to discuss caring for HIV/AIDS patients amid an ongoing pandemic was sexual health educator Crystal Ellis of Crystallized Sexuality. She is a co-adviser for CAM-STL’s program and has a master's in public health from Washington University’s Brown School.
Ellis said public health officials and researchers have unintentionally missed the mark when it comes to making an impact in local communities.
“We don't know about our communities. Washington University is a great university and attracts folks internationally across the country. I'm from Los Angeles and moved here for the school,” she explained. “While it does great work in the community, a lot of times the students are naïve to think that we can walk into Pagedale or to Baden and just pass along some condoms or pass along some information and change this person's life.”
To combat that, she said she’s focused on creatively reframing topics of HIV, AIDS and STIs on social media outlets.
“I follow and am a part of a sex education network and community of folks who are doing the hard work and doing everything possible to avoid getting banned on Instagram, to avoid getting banned on TikTok, just to share this important sexual health information,” Ellis said.
Also joining Wednesday’s talk show was artist and activist Charles Ryan Long, who is moderating tonight’s panel discussion at the museum.
He explained how the theme of this year’s Day With(out) Art emphasizes how people can care for one another in a way that's maybe overlooked compared to pharmaceutical treatment for people with HIV. The films included in this year’s commemoration explore how mutual aid has sustained communities living with the disease around the world, especially communities of color.
Mutual aid is based on the practice of people and organizations voluntarily exchanging resources and services for mutual benefit.
“Many of the early interventions in medications were brought on because of community pressure,” he said. “We've also seen that in the last couple years, as we've dealt with a pandemic, when the idea of mutual aid and folks stepping in where government systems were lacking and providing services for each other and really caring for each other.”
Long is also part of the collective What Would an HIV Doula Do? and explained how it helps people dealing with an HIV diagnosis and broadens the concept of what a doula does before, during and after childbirth.
“We think of a doula as a person who helps through transition. And transition is any moment in our lives. You can doula someone in death, you can doula someone in birth, but there are also moments in our life that we transition, from being housed, unhoused — these types of spaces where care and holding a person can actually mean their survival.”
Putting together this program at CAM-STL offered a unique experience for Ellis’ sexual education work to destigmatize topics that pertain to sexual health.
“I'm not necessarily used to having accessibility to art spaces to showcase the vastness of sexuality, queerness and different communities that deserve our attention,” she said.
“The museum space offers a place for folks — photographers, artists, sculptors — that showcase nudity, that showcase other forms of bodies, that we don't really get the opportunity to learn in a textbook or in an education setting. So we offer a different perspective when you have that access to the full body and all its glory.”
Related Event
What: Day With(out) Art: Enduring Care
When: Dec 1. Doors open at 5:30 p.m. Panel discussion at 6 p.m. AIDS video program at 7 p.m.
Where: Contemporary Art Museum St. Louis
“St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is hosted by Sarah Fenske and produced by Alex Heuer, Emily Woodbury, Evie Hemphill and Lara Hamdan. Jane Mather-Glass is our production assistant. The audio engineer is Aaron Doerr.
