Twenty-four years ago, Summer (not her real name) was born with HIV. But with advancement in medicine, she knows that she can live a long, full life and have a child who does not enter the world with the virus. She and another young woman at the Saint Luke's and Roosevelt Hospitals' Spencer Cox Center for Health share their stories in short videos by MyMediaLife, an organization that helps young people spread information and education about HIV in beautifully shot, informative, and engaging short public service announcements. In addition to telling her story, Summer was one of the filmmakers who helped create and produce the campaign. Here, she shares her view on this groundbreaking work.
HIV Plus: What did you gain from your experience with MyMediaLife?
Summer: Self-awareness and self-worth. This was truly a learning experience. I was infected at birth so I have been living with this condition for 24 years. This experience has helped me accept the part of myself — the part that from society’s perspective is a monstrous disease. It helped me to realize that I'm no different from someone with diabetes struggling to take their insulin daily, or a cancer patient who struggles to stay in remission. For 15 years I did not take my meds. I didn’t even acknowledge that part of my life before I made the films. But after making "Happily Ever After," I decided to start and now I take my pill happily every day.
This process also helped me to realize that current forms of awareness-raising aren’t effective enough to deter the spread of the manageable condition and that there needs to be a new approach to youth who are now more technology savvy.
What do you think was the value of making your PSAs with a group of others who share you experience?
Being among people who are living with HIV and brainstorming about the struggles that we each face — whether it’s stigma, taking our meds, or dating — gave us an emotional connection. We each shared some insight on our lives that we wished to share with the world. Knowing that the work we put into these films to help someone struggling with the same problems that we face was of great value and inspiration to all of us.
Why are you trying to raise money to make more PSAs?
The group that I am a member of (YAP) is losing funding. That means that without the funds we once had, YAP may not have the opportunity to produce another campaign. It is important to us to spread awareness among other young people with HIV. We’re dedicated to challenging the stigma that comes along with HIV and informing people of the new medical discoveries around treatment, and the PSAs allow us to do that in a fun manner; the MyMediaLife workshop part that we do to create the campaign is really fun and gives us a chance to use our experiences to make a film script. HIV has evolved into a manageable condition. But how many people are aware of that? And why are there so many new diagnoses? Making these PSAs gives us the opportunity to spread awareness so that one day in the near future the HIV epidemic can cease.
Before MyMediaLife were you ever given the opportunity to reflect on your experience?
Yes. I attend the Young Adult Program [at the Spencer Cox Center] weekly with young people who are also living with HIV. We are all able to bond and vent on the struggles that we face daily and try to inspire each other with the help of our social worker, Katie. YAP has been around for about 7 years and Katie has helped a lot of young people with HIV over the years. Between the YAP group Katie runs and the MyMediaLife activities that give us a voice through these PSAs those of us in the group have a lot of opportunities to improve our lives and health. Now budget cuts are making it harder and harder to keep the program alive and they make it impossible to do more filmmaking activities.
Is anyone else from the group motivated to help with the campaign?
Yes. One day after we made our last films a group of us got together and thought about what we could do to raise money. Someone was like “let’s use Indiegogo!” I had no idea what that was, but then we looked at other campaigns and agreed we could do that! This campaign is a team effort. I grew much closer to the other young people I worked with in MyMediaLife and now we are getting even closer as we work together to raise funds to make more films. Also, there were a lot of people from the YAP group who did not have the opportunity to participate in the last project, but after they saw our finished films they were all interested in MyMediaLife. So they’re helping with this campaign too.