Leaving HIV Stigma Behind at Summer Camp
For kids and teens living with HIV, Camp Sunrise offers a respite from the burden of their disease.
For most people, the idea of sleepaway camp conjures memories of peeing in the woods, food fights, late-night mischief. But for Maci, the summers she has spent at Camp Sunrise, a summer camp for children and youth impacted by HIV/AIDS, the experience was something more: a break from being different.
“It’s the one week out of the entire year that I feel normal,” said Maci, who began attending the Columbus, Ohio-based camp when she was just six-years-old. “It’s the only place I can just be that person I’d like to be if HIV weren’t in my life.”
Maci was born infected with HIV, having contracted the virus in utero, during birth, or through her mother’s breast milk. Though her prognosis was grim, as was that of most babies born in the early 1990s, the introduction of powerful antiretroviral therapies just years later meant that children like Maci, not expected to make to past kindergarten, had a shot at growing up.
Now 20 years old and a sophomore at Kent State University in Cleveland, Maci is one of thousands of young people who have survived in HIV’s shadow. Physically, she’s endured a childhood punctuated by serious, often deadly, infections and suffered various effects of long-term anti-retroviral use, such as hearing impairment and memory loss. Emotionally, she has grappled with anger toward her mother, who she blamed for infecting her with HIV, and the grief that came when Maci lost her to AIDS.
On top of it all, Maci has struggled with trusting others with the secret of her HIV status. Fearing judgment, she has chosen to deal with her own unknown prognosis, for the most part, on her own. Except, she says, at Camp Sunrise, where she spent one week each summer for the past 14 years.
Founded in 1995 in response to the growing number of HIV-positive children in the early- and mid-1990s, Camp Sunrise is one of the few remaining summer camps of its kind. Over the years, Camp Sunrise has welcomed upwards of 1,000 children and youth who are HIV-positive, who have a sibling, parent, or caretaker living with the disease, or have lost a loved one to AIDS. Its goal is simple—to create an environment free from the social burdens so often associated with the disease.
Aside from “Club Med,” the tongue-in-cheek nickname for the infirmary, where a team of nurses are on hand to administer antiretroviral drugs and other medications, Camp Sunrise is in many respects like any other summer camp. Campers spend their days in the pool, on the zip-line, or tie-dying t-shirts and pillowcases. In the evening, the camp comes together for a campfire, a pool party, or a talent show. This year, in celebration of its 20th summer, Camp Sunrise is having a carnival.
“It’s the one place where I can let go and be goofy and silly with my friends,” Maci said.
Similar camps, faced with increasingly limited funding for AIDS-related programs, especially for those affected by but not living with the disease, have closed their doors. Others have broadened their missions to include services for children with other serious illnesses.
But Keiffer Erdmann, director of Camp Sunrise, says camps like Camp Sunrise are still needed until the cruel stigma that surrounds HIV/AIDS goes away. Though scant research has been conducted on how children impacted by HIV/AIDS experience stigma, a growing body of evidence suggests that HIV-related stigma experienced by adults with the disease affects everything from mental health to treatment adherence.
“We live in a world where people still tell AIDS jokes and think you can get HIV by sharing a drink,” he said. “Camp is sadly just about the only place many of these young people don’t have to worry about not being accepted.”
Outside of Camp Sunrise, Maci has not disclosed her HIV status or talked about its challenges with anyone other than a therapist. She’s unsure how others would respond if they knew the truth, for good reason.
“When I was in pre-school the teachers separated me from the other kids and left me in a room by myself so I wouldn’t infect anyone,” she said. Though Maci does not remember the experience, her mother’s retelling of the story stuck with her.
“Whenever I think about telling anyone I remember that story,” she says.
To protect her daughter from experiencing more discrimination, Maci’s mother hid the fact that both she and Maci were HIV-positive. “My doctor finally told me at a check-up when I was nine. Up until then I thought my mom just got sick sometimes and all kids took medicine to stay healthy,” she says.
At first, Maci says she shrugged it off. “When you're little, you don't know what AIDS is.”
But as Maci got older and eventually assumed the role of caregiver to her mother, who was dying of AIDS, she began to understand what it meant to have HIV. “I worried a lot that was going to happen to me too,” Maci said.
Maci’s mother passed away when Maci was 16 years old. Still, Maci did not confide in friends from school or church. “There’s no way I could talk about what was happening at home,” she said.
Instead, Maci turned to the friends she had made at Camp Sunrise, who had stayed connected with her through social media and texting. When the time came for camp the following summer, “I just wanted to take a break from all that stuff I had been through and just have fun,” she says. “You don’t have to hide HIV at camp but you don’t have to talk about it either.
Erdman says it’s not just children living with HIV who need a break from the burden of the disease. “Uninfected children have a lot of anxiety about their family’s health and whether their parents are going to be treated differently at work because of it or if they are going to get treated differently at school because of it,” he added.
Eighteen-year-old Summer Gragg, whose older sister is HIV-positive, first came to Camp Sunrise at the age of nine and has returned for 10 consecutive summers. She says she and her four siblings, all of whom attended Camp Sunrise, “are free to be ourselves without being scared of what other people will think.”
“You can’t just walk up to someone and say ‘oh my sister has HIV’ like you could if she had some other disease,” she said.
Like Maci, Gragg too, has experienced discrimination. In Gragg’s hometown of Chillicothe, Ohio, several people “removed themselves when they found out about my sister,” she says.
“In the real world you just sort of learn that you have to keep a lot of things bottled up or risk losing people,” Gragg said. “At camp, you don’t have to worry about that because everyone is like family.”
With mother-to-baby transmission of HIV having been nearly eradicated in the U.S. thanks to vigilant drug antiretroviral treatment of infected pregnant women, most of the campers at Camp Sunrise are now well into their teenage years. Many, like Maci, have since returned in a staff role.
The teens take part take part in leadership- and skills-building activities to help them with challenges they face outside of camp. They are also encouraged to step outside of their comfort zone and build confidence—be it by reading a poem in the camp-wide talent show or conquering the climbing wall.
“We try to set them up to succeed year-round, whether that’s working with them to improve their treatment adherence, navigate their sexuality, disclose their HIV-status or apply for a job or college,” Erdmann said.