Growing Up With HIV, Part 2: Battling Stigma

Ashley talking at We Day Chicago on April 30, 2015.

Last week Ashley Rose Murphy shared her journey of growing-up HIV-positive and how she was inspired to become an advocate. Read below to learn about her work today and how you can get involved in the effort to create an AIDS-free future.

I first learned I was living with HIV at age seven. When my parents told me about my status, they said that I mustn’t tell anyone because people might be afraid and could treat me differently or be mean. I didn’t understand. I hadn’t done anything wrong. I was born with a virus. So I started telling everyone. Most kids had no idea what I was talking about so they didn’t treat me any differently. I was just their friend, Ashley. 

But their parents’ reaction was a different story. I was banned from playing with neighbors’ children, uninvited to sleepovers and birthday parties, even just last year a friend’s parents told them that I had to use disposable utensils, plates and cups when I visited. But my friend corrected her parents. She had done the research and knew what the facts were.

By the time I was 10 I started sharing my story publically. I had done volunteer fundraising with my family for various charities since I was 3 and speaking about my condition was something I was comfortable with. I started speaking at HIV conferences and charity fundraisers. When I was 12 I was in a documentary about growing up with HIV which aired across Canada and the United States.

As I spoke I found that people asked questions and were eager to learn more and become educated about HIV. My parents supported my efforts and cheered me on. My large family which had grown to 10 kids by 2009 was very supportive and when the people would try to bully me, I knew I was surrounded by a web of love mixed with leg braces, walkers, and wheelchairs. They would have to go through them to get to me. There was strength in numbers – even if eight of the 10 kids had special needs. I felt empowered and emboldened. I knew I had to keep going. I had other friends living with HIV who faced bullying that was so harsh their families were forced to  sell their home and move schools because of people making fun of them over their HIV status. I knew that I was in a position to help. People still excluded me or bullied me but I didn’t care much what anyone thought. I knew I could use the supportive network I had to educate people while still being in my safe environment. 

My mother would tirelessly drive me to one event after another and I was reaching more and more people. When I was 16  I was offered the opportunity to speak at We Day and I jumped at the chance. It was the opportunity to educate 18,000 young people in six minutes. I was nervous but my mom was even more nervous. She was afraid we may have to move if people started harassing me. My school was live streaming the event in the school lobby and anyone who didn’t know about my HIV would certainly know after my speech. When I spoke the room fell silent. As I finished I was so worried about their reaction but they gave me a standing ovation. I came off the stage and ran into my crying mother’s outstretched arms. I knew it was going to be okay.

Since then, my mother has travelled all over with me as I have spoken to more than 200,000 students in arenas all over North America and to Geneva Switzerland where I spoke at a UNAIDS gala. Slowly the tide is turning and people are becoming more accepting of people living with HIV.

The most wonderful feedback I receive is from other HIV-positive youth and adults who have used my Youtube videos to open the door to a conversation about HIV.

Today, I don’t view my HIV status as a curse or a terrible thing. If I wasn’t living with HIV, I would not have ended up with my wonderful family. I would not have had the opportunity to travel to France, Kenya, Switzerland, and across North America. I don’t let it control me, I control it. My viral load is undetectable and my CD4 has come up to the low 500’s. My weight and the side effects are an issue but I am keeping an eye on it (and you can bet my mom has a piece of cake or huge plate of pasta in my face at every opportunity).

I am so proud to call myself an advocate today and know that with the support of organizations like the Elizabeth Glaser Pediatric AIDS Foundation, we can continue to fight the fear, stigma and discrimination that many people living with HIV must face and ensure that moms and babies everywhere have access to lifesaving care that will help us achieve a future free of HIV and AIDS!