Cover photo by Wes And Alex (@Wes_Alex) for WE Day California.
We often think of long-term survivors as middle-aged men and women facing their approaching golden years. But there are another group of people who have been living with HIV for decades — those who were born HIV-positive.
Canadian Ashley Rose Murphy is one of those frequently forgotten: she has been living with HIV since the day she was born in 1998, to a drug-addicted mother, but she’s never let it slow her down.
“The way I see it, I don’t look to my HIV as being a burden or something that I wish had never happened because, without it, I don’t think I’d be the person I am,” Murphy told A Plus — the positive media outlet founded by Ashton Kutcher and run by Chicken Soup for the Soul folks — last November. She shared a similar sentiment in her 2017 TEDx Talk that went viral for this encouragement: “Don’t be normal. Normal is boring. Be extraordinary!”
“Every time someone emails me and tells me that they used my TEDx Talk to break the ice and disclose to a potential romantic partner or a friend, that makes my day,” the 19-year-old activist says now. “I’ve had it happen many times and each time it’s so gratifying. To have people finally be able to disclose and be accepted and thank me for helping them is the greatest thrill.”
Murphy says she knows “what discrimination feels like. That sting of rejection. To even be able to help one person feel the freedom that comes with living openly and not caring what others think of your status is empowering.”
The resilient HIV-activist is now in her second year of college, where she admits, “it’s hard work keeping up with school and maintaining the advocacy work that I do. Lack of sleep, rushing all the time, side effects of medications — takes a toll on my health. It took me a month to get over a very nasty cold at the beginning of last year, and several weeks after that to regain my strength. Staying healthy and taking care of myself is a challenge. My viral load is undetectable but my CD4 numbers have always been low.”
Indeed, her HIV had already progressed to HIV stage 3, better known as AIDS, before she was even 6 weeks old. But the tiny baby girl had already proven herself a fighter. According to a community newspaper from her Canadian hometown of Ajax, Ontario, the infant was almost killed in an accident when she was 3 weeks old. Also born with mild cerebral palsy and Fetal Alcohol Syndrome, Murphy has said she was put on a respirator and into a medically-induced coma in an effort for her body to heal as doctors fought the virus.
Murphy says she weighed less than 4 pounds at the time. “But 3 pounds of that was attitude,” she once wrote in a Poz essay. “I fought to live and they fought to save me. Just before I turned 6 months old I was removed from the respirator and placed with my foster parents. I weighed only 8 pounds, 3 ounces. My skin was translucent. Most of my hair had fallen out. My nails had stopped growing and I was very frail. Children’s Aid told my foster parents that I only had a few weeks to live and was being placed with them for palliative care.”
Kari and Don Murphy weren’t just up for that challenge: the couple eventually raised 10 kids, eight of whom have special needs. “I guess that is part of the reason that I grew up confident enough to live openly with my condition,” Murphy wrote. “We all had some disease or disability. Most of us have lost one or both of our birth parents, and most had drug and alcohol exposure in utero.”
At age 5, Murphy still weighed just over 20 pounds (a healthy weight for a one-year-old) and a permanent feeding tube had been inserted through her abdomen, where it remained until she was 9. Murphy’s parents first told her she was living with HIV when she was 7. Afraid of the stigma and discrimination she might face, they warned her not to tell anyone. She didn’t heed their advice. Looking back, Murphy wrote, “I knew I hadn’t done anything wrong, so I just started telling people.”
“I live completely openly with HIV and have since I was 7 years old — before I really understood why my parents implored me to stop telling people,” Murphy admits. “I was ostracized, not allowed to walk on a neighbor’s lawn or play with their children, rejected by boys I liked, had parents call and try to get me uninvited to a birthday party.”
The collegiate activist says her first taste of stigma came when she was just a baby. “I had been in a foster home for two weeks as a newborn and when that foster mom found out I had HIV she refused to come visit me in the hospital while I lay in a coma for three and a half months — even though she was still paid to be my foster parent — and when I was to be discharged for palliative care when I was 6 months old, she hung up on the social workers who called. That was truly a blessing though, because after more than 200 phone calls and ‘no’s’, they finally reached my mom who said ‘yes’ and that saved my life.”
It was Murphy’s own tenacity and transparency that inspired her to be a vocal activist, and she has been publically speaking about being HIV-positive ever since. More recently Murphy reached out to the Elizabeth Glaser Pediatric AIDS Foundation and “asked if I could be of service to them.”
The nonprofit organization is dedicated to preventing children from becoming HIV-positive, and to eliminating pediatric AIDS through research, advocacy, prevention, and treatment programs. Established in 1988, it was later named in honor of the founder, Elizabeth Glaser, who was one of the first HIV-positive moms to speak openly about poz children, after two of her own contracted the virus. Her son Jake Glaser, now in his 30s, continues to support EGPAF’s now global efforts.
After meeting with the organization’s leadership in 2015 at the International AIDS Conference in Vancouver, Canada, Murphy began serving as an ambassador for EGPAF, a role she still fulfills today. “I use my social media platforms to share EGPAF’s message, have written a couple of blog posts, [and] wrote a piece for the HuffPost.”
She’s also attended events in Los Angeles, such as A Time For Heroes, and like the teenage girl she is, she danced all night at UCLA’s 24-hour dance marathon.
Murphy is also involved with #GenEndIt (GenEndIt.org), a campaign aimed at educating young people about HIV and empowering them to know their status and advocate for ending AIDS by 2030. Through the campaign, Murphy has gotten a chance to work with actress Charlize Theron, Tom Shoes founder Blake Mycoskie, YouTube sensation Lilly Singh, and Bono’s (RED) foundation.
The teen activist has received a long list of awards for her work, including Prince’s Youth Service Award, International Women of Courage Award, Ajax Youth Citizen of the Year, The Queen’s Young Leaders (runner-up), Inspire Awards Charles Roy Award for Activism in HIV/AIDS 2015 (presented by the Toronto, Canada LGBT community), and the one she says means the most, a 2016 Terry Fox Humanitarian Award.
“It’s a $28,000 scholarship, which means that I will graduate from university with no student loan debt,” Murphy acknowledges, but explains that’s not why the honor means so much to her. “Terry Fox is a hero. I’ve known about Terry Fox and his journey since before I even knew I was HIV-positive. He was just a kid, 19 — same age as I am right now — when he attempted to run across Canada on one leg. He had a prosthetic leg and was constantly in pain. He made it halfway across Canada, 3,300 miles, when he became gravely ill as the cancer had spread to his lungs. He died shortly after. Since his death over $750 million has been raised to fight cancer in his name. Many people are alive solely because of his efforts. To be chosen by his family as worthy of representing his name was such an honor. I was shaking and crying when I found out. It was incredibly humbling.”
Murphy may not have walked across Canada, but the activist has traveled around the world, including visiting Kenya, where she helped build schools for WE Charity’s Free the Children program.
With the goal of “becoming more involved in the global fight against HIV,” Murphy recently launched OutLoud on HIV, which she describes as “a student-led, student-focused initiative whose aim is to educate youth about HIV.” OutLoud on HIV provides information, testing, condoms, and counseling.
“It’s in the beginning stages,” Murphy says. “But so far, we have eight universities from Canada, several African nations, and one Caribbean nation who have expressed interest in implementing the program in their own schools.”
Never one to turn down a fight, Murphy adds, “UNAIDS wants me to be more involved with their work…. I have done several things with them as well and I look forward to doing more. Really, in any way I can help, I am interested. I believe we have the power to end AIDS if we work hard and don’t let up.”