This is a short segment from a paper I am working on about the Youth Movement in the International HIV/AIDS area. I met Stephanie this past August at the International AIDS conference in Mexico City, and interviewed her on her impression of the state of the youth movement and how young people are mobilizing around HIV and AIDS issues. What follows is an excerpt from the paper and a summary of the interview:

Stephanie is a 16-year-old HIV+ youth from Australia who was born HIV+. She is an incredible young woman and a fervent advocate for children born with HIV. Stephanie recounts that youth don’t get much say or much power in policy making, and much red tape affects a young person’s ability to even participate in events like the International AIDS Conference (she mentioned that it was difficult even for her to get to Mexico to the conference, as individuals under18 years old are not funded to go, because insurance companies don’t allow it). As a young person born with HIV, she has suffered much discrimination and stigma, and despite the many advances and accomplishments of her and her peers, growing up, it was still “very obvious [to her] that [she and other HIV+ youth] weren’t accepted in the community as an organization or as players in the HIV field.” Things have changed dramatically, she noted that even coming to a conference such as the International AIDS Conference surprised here: “people just sat and listened to what I had to say and it was really overwhelming and different.” Stephanie has made this her life goal, and is tirelessly working to make sure that prevention and education are key, and supporting HIV+ people and the discrimination and stigma that they face.

Stephanie believes that getting young HIV+ people involved is key. Her concern is that groups of more experienced and older activists and positive activists aren’t making any room for young people. She mentions that whenever she says anything to them, they think they are being disrespected because she is so young. While having enormous respect for them, starting all these organizations from scratch, she still believes these more experienced activists have an amazing opportunity to mentor and teach youth and they aren’t doing it to the best of their abilities; “would you rather mentor a youth and teach them what you know and know that they will do a good job because you’ve taught them what you know or a random middle-aged person coming into the job who doesn’t know anything.” Her point is well taken and elucidates the need for the peer education others also called for. She also called for a need to break the silence to talk about sex especially by public figures and especially in public forums and debate. She talked about how the US has so much power, and bemoaned how unfortunate it is that they aren’t using it to do as much good as they could be; “The US has a lot of influence, it creates this ‘we should be doing what they are doing because they have the money and the power’.”

The most pressing issue for Stephanie was surprising: “it’s not the illness that’s bothering us, it’s the medication.” She explained that her most pressing issue was the side effects (both physical and psychological) she felt from the HIV medicines she was taking. I learned that pediatric medicines did not exist until Stephanie was about 6, and she so and her mother had to steal medicines that were not appropriate for children, therefore she and many other positive youth now experience symptoms of lipdistrophy (wasting) and lipoatrophy(gaining), where they either gain tremendous amounts of weight in concentrated areas, or they waste away and cannot gain any weight at all.

Stephanie was very clear in explaining that the peer education she and other fellow HIV+ are working to make available. She recalls that “it saved our lives basically because of all the social discrimination we faced… we just needed to be normal.” The biggest problem that is not working right now that Stephanie explained what happens when governments give funding then take it away. She believes that they should either give it or don’t; “it’s way too political for an illness; I don’t know any other illness that is so politically geared and so controversial, and no one wants to talk about it. It makes it really difficult.”

Despite all the hardships and difficulties she has been dealt, or maybe in part because of them Stephanie has become a committed and lifelong advocate for HIV+ youth rights. Her final words stuck with me throughout the conference and still stand out in my mind as so crucial “Nothing about us without us.” I think this is a perfect summary for how policies on youth should be created, and an example of the knowledge and understanding young people have of what they need.

Courtney Matson