Muluba Habanyama was seven when she realized that she wouldn’t always be treated like other little girls. She had recently joined the Big Brothers Big Sisters Canada program and was invited to have dinner with her new Big Sister and her Big Sister’s husband. She was shy at first, but excited as well—it was the first time she’d be hanging out with them on her own. But when she sat down to dinner, her hosts served her BBQ and corn on the cob on a paper plate, instead of the glassware that they were using. Habanyama’s utensils and cup were also paper—because her hosts were afraid to reuse the dishes after she had eaten off them because she is HIV positive.
Habanyama went home in tears. “It was very hurtful,” she says.
Despite the fact that the virus cannot be spread through food preparation or sharing of food, her experience is all too common. According to the recent Smash Stigma study conducted by Casey House, the nation’s only stand-alone hospital for people living with HIV/AIDS, only half of Canadians would knowingly share food with or eat food prepared by someone who is HIV positive.
“The numbers tell the story really clearly that there’s a lot of misunderstanding about this disease,” said Joanne Simons, the CEO of Casey House. “Unfortunately, we were not surprised [by the results of the study] because our clients—as you’ve heard from Muluba—experience this stigma day in and day out.”
An estimated seven people in Canada are diagnosed with HIV every day. While it’s not the “death sentence” it was in the 1980s, Simons says HIV is still a “health crisis” in Canada, where the numbers have recently been on the rise. Habanyama says that after that experience at her former Big Sister’s home, she “put a lot of walls up,” and it “hardened” her against people’s misconceptions about HIV, a disease she has had since birth.
Habanyama’s mother unknowingly contracted the infection from her husband, who was unfaithful, and then passed it down to her daughter at birth. Her parents split, and Habanyama moved from the U.K. to Canada with her mother and sister. When she was two, Habanyama and her mother learned that they were both infected with the human immunodeficiency virus, better known as HIV.
Their doctor explained that in the body, there are “good soldiers” that fight off infections and help protect and maintain good health (i.e. the immune system), Habanyama recalls. But HIV is like an army of “bad soldiers,” coming in and killing the good guys, leaving the body without any defence. This is the war Habanyama learned was being waged within her tiny body—and it was a battle she learned to keep to quiet about.
“My mom explained that families have certain secrets and stuff that we don’t go around telling other people and [being HIV positive] is what we shouldn’t tell other people,” says Habanyama, who is now 24 and living in Toronto. In Zambia, where Habanyama’s parents were from, contracting HIV was considered a death sentence and if word got out, then the entire community would treat them differently. When Habanyama moved to Canada with her mother and sister, she experienced similar stigma.
“We moved around a lot in Canada because we would tell one person from church and the next day, the whole congregation knew,” she says. (The only reason her former Big Sister knew was because Habanyama’s mother had disclosed this information to Big Brother Big Sister Canada, just in case something were to happen to her daughter.)
The Casey House Smash Stigma study revealed that if they were to test HIV positive, nearly 80 percent of millennials would be nervous or ashamed to share their health news openly. But at 21, after losing both her mother and father to the disease, that is exactly what Habanyama decided to do with a YouTube confessional video. She has since become a vocal advocate for the estimated 75,500 Canadians living with HIV and AIDS.
“I didn’t feel like I could tell one person because that person would tell a lot more people, so it just felt like I was going to have control over one thing in my life and disclose to everybody,” she says.
Habanyama isn’t the only one taking control of the narrative surrounding HIV and AIDS. In an effort to combat the stigma and misunderstanding surrounding HIV-positive people and food, Casey House is creating June’s HIV+ Eatery, a pop-up restaurant in Toronto on Nov. 7 and 8 with dishes prepared and served in part by 14 HIV-positive cooks, including Habanyama. She is particularly passionate about the event not only because of her experience, but also because around this time last year, she had dropped down to 60 lbs and was living in Casey House receiving life-saving treatment.
The 24-year-old, who is now in good health and working as a freelance journalist, admits that cooking isn’t exactly her forte. In fact, her sister laughed out loud when she heard that Habanyama would be acting as a cook for the fundraising dinner. But Habanyama is taking comfort in the fact that the pop-up restaurant, created in part of the Break Bread Smash Stigma campaign, will be led by Chef Matt Basile of Fidel Gastro.
And despite her breakfast-for-dinner habits, Habanyama says she is excited to get into the kitchen to start chopping up the stigma she and other HIV positive patients face: “It’ll be a whole new adventure for me.”