Living Openly: Talking with Teen HIV Activist Ashley Rose Murphy

Ashley Rose Murphy is a long-term survivor of HIV. And she is only 18. Born to an HIV-positive mother, she was expected to live only a few months when she was adopted by Kari and Don Murphy. They told her she was living with HIV when she was 7 years old. Yet, despite their misgivings, Ashley never kept her status a secret. Now the high schooler from the Toronto suburb of Ajax is an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation and works to raise awareness about HIV, especially among her peers. The numbers show the education is needed.  According to the Centers for Disease Control and Prevention, in 2010, youth aged 13−24 accounted for 26 percent of all new HIV infections in the U.S.

In advance of National Youth HIV and AIDS Awareness Day on April 10, we spoke to Ashley about living openly with HIV, her advocacy work, and eradicating stigma associated with the virus.

Q. What made you decide to share your HIV status openly, especially at such a young age?

First and foremost, my family. I come from a diverse family of 10 kids – foster, adopted, natural born. My parents told us to never be ashamed of who we are. So when I found out about my HIV status, I knew that I didn’t want to keep it a secret. I wanted to share and be open, because I figured, ‘Why not?’ That being said, my parents didn’t want me to really tell anybody because they were afraid of people’s reaction. Also at 7, I went to a summer camp for kids who were infected with HIV or affected by it. I realized that many kids weren’t comfortable with their HIV status. I realized that I could be the voice of those who were too afraid to speak up.

Q. How did people respond?

A. The kids were cool with it.  The parents weren’t as accepting. I was invited to a sleepover party when I was 7 years old and one of the moms whose daughter was going called up the host mother and said, ‘Did you know that Ashley has HIV?’ sounding as if she was concerned. The host mom said, ‘Yes, she is going. And if you don’t want your daughter to go, then don’t have her go.’ In the end, the mom smartened up. Her daughter went to the party, I went to the party and we all had a great time.

Q. Since HIV continues to disproportionately affect gay males in America, many people have the perception that they are not at risk. What are the perceptions among your peer group?

Kids my age don’t see HIV as being a big deal, so they don’t protect themselves. People in general think HIV has become a thing of the past.

Q. How much do you use social media to raise awareness of HIV? Do you feel it is effective?

A. I predominantly use Twitter for my advocacy work, and I post a little bit on Facebook and Instagram. I share my story, statistics, articles, material from some of my speeches. I use it to build connections but I also use it to educate people. I do feel like it’s very effective. When I give speeches, I put them on my PowerPoint, my Instagram, my Twitter, my Snapchat. When I go to some schools, I open the floor up to questions, but a lot of kids are kind of shy. So they DM (direct message) me on Twitter or Instagram and ask me questions or tell me their stories.

Q. You have gotten so many opportunities to share your story. Speaking at the UNAIDS gala, during the UN during Assembly week, going to Kenya. How did all these come about?

I’m a WE Day speaker (www.weday.com) and I have been able to meet some really cool people. I’m actually good friends with Kweku Mandela, who is Nelson Mandela’s grandson. He’s had family members who have died of AIDS. When he met me and heard my story, he got inspired and he said, ‘I hope you don’t take this the wrong way, but you are what the HIV community needs.’ When people think about HIV, they don’t usually think about an 18-year-old white girl from Canada. He said the fact that I am speaking to people about my status breaks down that whole stereotype of what HIV looks like.  It kind of makes me look like the girl next door. Even a kid in Canada who is 18 and goes to regular high school can have HIV and be born with it.

Original posting: http://www.amfar.org/Ashley-Rose-Murphy/