The Chicago History Museum (CHM) hosted a June 23 panel with doctors and dancers who shared their experiences with the HIV/AIDS epidemic as well as ideas for continuing to address the disease today.
Following the discussion, Chicago Dancers United performed a piece reflecting on the history of HIV/AIDS in Chicago. The event "Dancing For Life: Moving Through HIV/AIDS " is part of the museum's OUT at CHM series that highlights LGBTQ+ history.
"Dance has become a haven for many of us to celebrate the good times and also to come together in the not-so-good times," said Chicago History Museum Senior Public and Community Engagement Manager Gregory Storms, who hosted and helped organize the event. "Through both artistic expression and good, old-fashioned community organizing, the dance community has been especially important in the history of HIV/AIDs here in Chicago."
At the beginning of the epidemic before much information was known about HIV/AIDS, Dance for Life founder Randy Duncan said he watched many of his fellow dancers fall ill in secret due to the stigma surrounding the disease.
When he realized how many people were being affected, he knew that he had to do something to help and helped found Dance for Life an organization that still raises money for dancers' medical costs through performances.
"We found out colleagues of ours were falling off and dying on a regular basis and we wanted to do what we could in order to help that situation," Duncan said. "All of these dancers wanted to be a part of it as a way of giving back, performing at an annual event that raised finances so people could live out their lives, sometimes the ends of their lives."
Joel Hall Dancers & Center Artistic Director Jacqueline Sinclair explained dance and other forms of fine art hold a sacred healing power that people innately understand.
Both Sinclair and Duncan described how the dancers they knew living with HIV/AIDs would continue coming to practice even when they were feeling their worst.
"They were dropping weight and having lesions, but they were at rehearsal because it was essential for the soul to heal through dance and through artistry," Sinclair said. "So, we can't negate the power of dance as a healing form. It's something the dancers knew. It's instinctual."
In addition to those in the dance world, the CHM event also featured physicians who treat people living with HIV/AIDS.
Physician and author Ross A. Slotten described how watching the disease's impact on patients change from when he first started treating HIV/AIDS inspired him to write his book, Plague Years: A Doctor's Journey Through the AIDS Crisis.
In part, he said, "2004 was the last time that I personally saw people dying on a regular basis from HIV/AIDS complications. When I had a little more distance from that, I went back to my journals from the worst days of the crisis and thought, 'You need to write something.' I'd been there from the very beginning and so much has changed. … I could tell a story with a happier ending."
Mateo Betanzos, the clinical lead at Howard Brown Health, agreed that new treatments have fundamentally changed what it means to live with HIV/AIDS but warned that misinformation and stigma still runs rampant in communities of color that are still disproportionately affected by the disease.
"It's difficult to see," Betanzos said. "I see patients coming from different countries, who are undocumented, carrying a lot of stigma. They're still isolating themselves from their families and using one plate and spoon because they don't want to contaminate their families. It's heartbreaking because it's all from a lack of information."
Both Slotten and Betanzos agreed that doctors already have the tools to treat and prevent HIV/AID, but now it's a matter of making those treatments available to everyone. Betanzos said one place to start would be making information about HIV/AIDS accessible in more languages while Sinclair and Duncan emphasized the power of dance as another communication tool.
To learn more about OUT at CHM's event series, visit www.chicagohistory.org/out-at-chm/ .