Dany Stolbunov, 20, born with HIV, speaks on a megaphone during the social protest “We Want and We Walk” for the freedom and safety of mass actions. “I want my city to be free, open and safe — that’s why I am here today.”
My name is Yana Panfilova. I am from Ukraine, and I was born with HIV, on 20 October 1997. Now I am a founder of Teenergizer, an organization for teenagers (including those who are HIV-positive), but during my childhood, I thought I would die. Neither my friends nor civil society in Ukraine knew much about HIV at the time. For the majority, HIV was equal to AIDS. Yet my mother, who organized support groups for HIV-positive children, made me realize that HIV doesn’t kill. Ignorance does.
When I was in school, a friend’s grandmother gossiped about me, telling my classmates and teachers that I was a drug dealer. This happened after she saw me taking my therapy pills. Also, during a discussion on HIV in biology class, my teacher said to everyone, “I hope you’ll never meet an HIV-positive person in your life.” To put it briefly, I began experiencing inequality and discrimination in daily life. But discrimination was not the only problem. Self-stigmatization also aggravated the situation. For instance, when I was taking photos with my HIV-positive friends, I thought that we were supposed to hide our faces so that we would not be identified. Of course, it was impossible to say who was the person living with HIV when you looked at a photo. Yet this fear was making self-acceptance impossible.
In short, I was part of the generation for whom society had no expectations and no frame of reference. At some point, financial support for HIV-positive teenagers stopped completely. This made me dream about a movement where HIV-positive teenagers could work with other teenagers without hiding themselves. The movement would be a safe space for all adolescents in Ukraine.
“HIV-positive teenagers are just teenagers”
As a child, every New Year I had an opportunity to make a wish. Mine was to have a meeting of all the HIV-positive youth of Ukraine. The very next week, we managed to organize a meeting attended by 10 HIV-positive children. For me, this was a step towards accepting my status and becoming an activist. As for HIV-positive teenagers, it was the first meeting of the future Teenergizer team.
I reached out to my friends and strangers. I told them that we could change things together. I talked about Teenergizer whenever possible. And you know what? Things started to change. To be honest, things were not that inspiring at the very beginning. We did not find any support from stakeholders. People in government were nodding, smiling, promising to help. However, we received nothing from them. Basically, they still ignore us. But now we have a strong community ready to act.
About my organization, we now have two directions. The first one is HIV. The second is self-development of all teenagers. I decided not to limit the work of our organization only to HIV and AIDS. A simple message hides behind this idea: HIV-positive teenagers are just teenagers. We are not monsters, we don’t need ’special friendship’ or ‘special understanding’. By separating ourselves from others, we cause discrimination against ourselves. We keep forgetting that HIV doesn’t make you another person. It is JUST a virus. That is why half our team is HIV-positive and half is not. We are all equal.
Five years ago, we united the youth of Eastern Europe and Central Asia to fight the HIV epidemic. Now, we are ready to become part of an even greater effort. Our organization will take part in the HIV community’s global event – AIDS 2018. What I know for sure from my experience is that being united is the only way we can be heard. For HIV-positive teenagers from our region, this will be a unique experience: the first time in our lives that we will participate in such a far-reaching event. I hope that, empowered by the conference, our teenagers will return home to give a chance to the next generation of adolescents. An even bigger effort is yet to come.
Yana Panfilova is a student at the Academy of Labour, Social Relations and Tourism in Kyiv and an HIV activist. The founder of Teenergizer, she has been a member of the Steering Committee of the Global Network of Young People Living with HIV (Y+) since 2015. She was a speaker at the United Nations General Assembly 2016 High-Level Meeting on Ending AIDS.