Young women challenge stigma around HIV,
Born with HIV, two Toronto-area residents, Muluba Habanyama and Ashley Murphy, are sharing their stories, determined to do what they can to reduce stigma, raise awareness and eradicate mother-to-child transmission of the virus
For much of her life, Muluba Habanyama has lived with a painful secret that filled her with shame.
That is, until December when the 22-year-old, in an unscripted moment at a World AIDS Day event hosted by the Peel HIV/AIDS Network, disclosed to everyone that she was born with HIV and had lost both her parents to complications related to the illness.
“I felt like a spear had been put in my stomach and then it was pulled out,” recalls the Mississauga woman. “Then I felt calm, comfortable and not afraid.” She had been hosting the event as a Network volunteer and never intended on telling attendees about her own HIV status. But after listening to others speak so passionately about the issue, she was “inspired.”
Habanyama’s courage grew bolder. A week later, she recorded a five-minute video, titled Feel No Shame, and posted it on YouTube. She feared a backlash, and worried she would feel even more alone and isolated than before. That wasn’t the case.
“The reaction was overwhelmingly positive,” she recalls. “But there was also some confusion — people were surprised because I didn’t look sick, and there was confusion because some didn’t know the disease still existed.”
She’s determined to clear up any confusion by speaking out. Habanyama is now a community health ambassador for the Toronto organization Women’s Health in Women’s Hands, which runs workshops on a variety of issues, including human immunodeficiency virus (HIV), sexually transmitted infections (STI) and healthy relationships.
And, she’s a public speaker for the Network and has been invited to speak by other organizations, including the Ontario HIV Treatment Network.
At age 2, shortly after immigrating to Canada from England with her mother and sister — her mom fled an abusive and unfaithful husband — Habanyama became ill.
A battery of tests revealed both she and her mom had HIV, which can cause acquired immunodeficiency syndrome (AIDS).
Habanyama says her father contracted HIV from a sexual partner and transmitted it to her mom, who then passed it on to her perinatally.
As a child, Habanyama’s mom told her to keep her HIV status a secret, as she feared what people would say or do. One person in on the secret was Habanyama’s Big Sister, of the nonprofit organization Big Brothers Big Sisters.
When Habanyama was 7 years old, her Big Sister invited her to her home for dinner and insisted the girl use plastic plates, cups and utensils. It was then the stigma of having HIV became glaringly evident to Habanyama.
“Growing up was tough, it was lonely,” she says. “I had this one big secret that I felt like everybody would judge me on and I was very secluded from the world . . . As a kid, you just want to be free, and a lot of the times I felt like a prisoner.”
Habanyama remained in contact with her father — speaking with him by phone monthly — but their relationship was strained. He was in denial, unable to accept the fact that he had passed the virus to his wife and daughter. But during a trip to Canada the reality of Habanyama’s illness became painfully apparent to her father. He was visibly shaken as he watched her take her daily dose of medicine, she says.
Habanyama’s father died when she was13. It was a confusing time for the teen.
She was in mourning and at the same time angry with him for transmitting the virus and putting the family through difficult times.
After her mother’s death in 2012, Habanyama, who was 19 at the time, fell into a deep depression. She stopped taking medication and skipped doctors’ appointments. In January 2014, she was hospitalized as the virus ravaged her thinning body, almost killing her. It was a powerful wake-up call.
“I just started to love myself and wanted people to know the truth. I started to connect with people, built myself from the ground up and became at peace with my situation.”
Last fall, Habanyama started journalism studies at Sheridan College, and realized if she was going to seek a career asking people to open up about their lives, she’d need to do the same.
On that fateful day in December — World AIDS Day — she stepped up to the microphone.
“It’s so amazing (connecting with others),” she says. “It’s really the most incredible thing because you hear the most incredible stories and you just feel so empowered, like you can change the world.” Ashley Murphy was never shy about telling people she was born with HIV — neighbours, teachers, classmates, even new friends in the playground were supportive.
But at age 10, she realized other children with the virus weren’t so lucky — one friend was so severely bullied his parents had to uproot the family and move cities. So, Murphy started speaking out, first at an HIV/ AIDS conference in Toronto and then to the media.
Murphy was a natural, impressing many with her confidence and composure. And, she was buoyed by the positive reaction from other kids impacted by HIV.
Now 17, the Ajax teen has spent the last year travelling across North America with Free the Children, speaking at15 of the charity’s We Day events, sharing her personal story with tens of thousands of other socially conscious youth. Murphy’s key message — “Rock your differences, own them and be you” — has elicited standing ovations and praise from attendees, who’ve called her an inspiration.
“Growing up, people try and put you down so you need to be confident with who you are, even if it means having HIV,” she says.
“You just always need to know that you’re not alone and you can overcome it. I’ve overcome some great medical obstacles and yet I’m still here, healthy and well-liked in school.” Murphy has spoken at We Day events in Toronto, Montreal, Chicago, Seattle and San Jose.
She caught the attention of Nelson Mandela’s grandson, Kweku Mandela, who asked her to speak in March at the UNAIDS Gala in Geneva, Switzerland. And on June 4, she and her adoptive mom, Kari Murphy, spoke at the CANFAR (Canadian Foundation for AIDS Research) Can YOU Do Lunch event in Toronto, an annual fundraiser for HIV/AIDS research.
After all, finding a cure is one of her goals, along with ending mother-tochild transmission of HIV.
Murphy contracted the virus from her biological mother, a drug and alcohol addict.
Born at a time when medicine already existed to prevent transmission, she was nonetheless born with the virus — at 6 weeks of age she was diagnosed with full-blown AIDS. (She would also come to be diagnosed with mild cerebral palsy and mild fetal alcohol syndrome.)
For nearly four months, Ashley remained in a medically induced coma being given antiretroviral drugs to combat the virus. But the prognosis was grim.
When she was 6 months old, she was released into the care of foster parents Kari and Don Murphy for palliative care and expected to die within weeks.
“She was the definition of pitiful,” recalls her mom. “But when I brought her home . . . I just felt a sense of peace, like she wasn’t going to die . . . I just knew she was ours and that she was staying. From that day forward I never bought into the whole ‘palliative care.’ ”
She was right. The couple adopted Murphy, who is one of 10 kids — the family is a blend of biological, foster and adopted children.
Growing up, there were challenges for Murphy.
For instance, at age 5, she weighed just 23 pounds, so a feeding tube was inserted into her stomach, where it remained until she was 9 years old. Today, she continues taking daily medicine and her viral load is undetected.
The teen, a lively eleventh grader with dreams of pursuing performing arts studies, credits her loving family for helping her thrive.
“Growing up in a family of 10 kids I’ve always had an overwhelming amount of support,” says Murphy.
“My parents have always told me to ‘Never be ashamed of who you are, no matter what.’ . . . Having that support helped me to further my confidence and be comfortable enough to actually share my story with others.”