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Content warning: This article includes mention of suicidal thoughts.

Syracuse community members gathered at ArtRage Gallery Monday night in observance of World AIDS Day. Several attendees shared their experiences living with HIV/AIDS and memorialized people who have died from the disease.

During the annual event — a collaborative effort between Project OutLoud, ACR Health and the Turning The Lens Collective – organizers delivered remarks about the continued fight against HIV and encouraged attendees to tell their own stories about the virus. This year, the celebration also featured a new artwork series display from local artist Jaleel Campbell.

Campbell, who’s also Project OutLoud’s leader, and Katherine Lowe, ACR Health’s director of development and community engagement, opened the gathering with a speech advocating for the destigmatization of the disease and highlighting scientific progress in recent decades. But there’s still work to be done, Lowe said.

“Right now, worldwide, there’s over 38 million people living with it, and millions more at risk because of the lack of education, lack of access to care, PrEP, you name it,” Lowe said.

World AIDS Day, an international holiday celebrated on Dec. 1, had its 37th anniversary this year. Since the creation of the holiday in 1988, there has been significant progress in building widespread understanding of the virus.

Campbell began by introducing his new artwork series on display at the gallery, titled “In Secrecy.” The collection highlights the life of his cousin Terry, who died after hiding his HIV diagnosis from his family. Campbell said his cousin felt isolated because of his LGBTQ+ identity and died in 2017 without having a funeral.

“I’m able to be up here and not only tell his story but also just be loud and proud about my queerness because of that sacrifice from my cousin,” Campbell said. “This (gallery) was my way of honoring him and his legacy.”

The conversation then opened up to the community, with Campbell and Lowe inviting the audience to share stories, pictures and the experiences of people in their lives with HIV/AIDS.

Ella Chan | Asst. Photo Editor

Leslie Abreu speaks about her experience living with HIV and how the diagnosis changed her life. Abreu said she was diagnosed on Valentines Day in 2005 — almost 20 years ago.

Michael DeSalvo, a Syracuse resident, spoke about how he has tried to help those with HIV since he was diagnosed with the virus in 1986. DeSalvo, who identifies as queer, founded the Friends of Dorothy House — the first support group in central New York for people with HIV/AIDS who went through the prison system. The organization offers home-based care to people with the virus, including recuperative or hospice care, supportive housing and emergency assistance.

While the prevalence of people with HIV in prisons has decreased since the 1990s, the rate is still at 1.5%, over three times greater than the general U.S. population, according to the National Library of Medicine. The HIV prevalence in New York state prisons is over 3%, higher than any country outside of sub-Saharan Africa.

“My journey started in the prison system, where no one wanted to go, so it was pretty barbaric. I saw people shackled to beds while they were dying. It was really crazy,” DeSalvo said.

Cynthia Taylor, another attendee who was diagnosed with HIV in 2016, said she has tried to educate people about living with the illness. Taylor has written two books, “Eye of the Storm” and “The Long Way Home,” both of which she said serve as a manifesto for her three kids of “what not to do.”

Taylor said her uncle and some of her other family members have passed away from the disease, but she never thought it would happen to her. She said she struggled with suicidal thoughts in the past, so HIV wasn’t something she often felt worried about.

After being diagnosed, she said the realization that it could be fatal changed her outlook on life and made her think more about what she wanted to leave behind for her children. She said in some ways, the HIV diagnosis “saved (her) life” and was one of the best things that ever happened to her.

“I thought, ‘What could I do to leave my kids?’” Taylor said. “The best thing you can leave behind is wisdom and knowledge from your own experience.”

Michelle McElroy, ACR Health’s chief program officer, said that, while she herself doesn’t have HIV/AIDS, she has worked with patients who have the virus since 2006.

Both Taylor and McElroy’s patients have been able to make the most of their diagnosis, but McElroy said there is still plenty of work to be done for people who have the virus. She said everyone has a part to play in the process of fighting HIV/AIDS.

“As many advances as we have made, and as much as we celebrate these advances, it’s also important on a day like today to remember that living with HIV is complex,” McElroy said. “There is still a great deal of stigma, and there is still a dramatic impact on someone’s health and wellness.”

Published on December 3, 2024 at 1:37 am

Contact Henry: hdaley@syr.edu