The first time I met Jenna, I was walking out onto the floor of the basketball court in Pauley Pavilion. It was hour 13 of UCLA’s Dance Marathon, a 26-hour event to raise money and awareness for pediatric AIDS. Jenna had just passed me in a beeline toward the restroom when she spun around and exclaimed, “Hey! You have pink in your hair too!” “Yes,” I responded with a smile, “Isn’t pink hair just the best?” She nodded and giggled enthusiastically, then turned to continue the way she had came.
Hour 17 arrived around four in the morning and with it came a Dance Marathon tradition: Vigil. I stood on the dance floor with other dancers and looked to the stage. About a dozen kids, Jenna included, stood in a line holding hands. One by one they began to tell their stories, and eventually it was Jenna’s turn. With a strong stage presence that contradicted her small stature, she began to speak.
As she spoke, the gym fell completely silent.
We learned she was 11 years old and in the 6th grade. She stood up on stage and told over a thousand people she was HIV-positive and explained how she took medication every day to keep the virus count down. She described her constant struggle when deciding to whom she could open up about her status, who would still love her if she did open up to them, and who would still treat her the same way. At the age of 11, Jenna had become an advocate and a shining role model for people who live with the physical and societal repercussions that come with having HIV or having a loved one that is infected.
Just before Dance Marathon came to a close, I found Jenna and we chatted for an hour about everything from our hair to our families. Six months later, I joined the Pediatric AIDS Coalition (PAC) which organizes Dance Marathon. Through PAC, I was able to spend the day with Jenna at a Mentorship for kids affected by or infected with HIV/AIDS. We reminisced over our pink hair, played an intense game of capture-the-flag, took countless photos, and shared more stories together. Jenna had recently told her class her status. She had initially been given support by her teacher and classmates. However, as the weeks passed, people started bullying her. Her teacher began to treat her unfavorably and unfairly.
Her friends stopped hugging her and would wash their hands after touching her.
Medical research has positively transformed how we diagnose and treat HIV/AIDS. A positive status is no longer a death sentence. Virus levels can be kept at undetectable levels which severely limits transmission. With proper treatment, people with HIV can expect to live full lives and have kids without transmitting the virus to their loved ones. Though the science has progressed, the social environment surrounding HIV/AIDS remains largely prejudiced. An culture of ignorance and stigma still thrives. This is the stigma which Jenna actively works against every time she speaks out, every time she wins over the hearts of her audience, and every time she wakes up unashamed of who she is and what her status says.
With the never-ending and unwavering support of her mother, Jenna is now home-schooled for 7th grade, but has not given up in her fight to make a difference. Today, she is preparing for Dance Marathon 2017 which will take place on April 8th and 9th at UCLA. She has become more than just her status. As I get to know her through activities like tag games, icing cupcakes, and singing karaoke at the top of our lungs, I forget she has HIV.
It does not define who she is and what she can do.
We seem to be obsessed with defining people based on a few facts. While it makes sense that we do this, we must remember that each person is different. Each person has a story that deserves telling, and a story that deserves to be heard. We are not defined by our ethnicity, our gender, our mental health prognosis, or our HIV status. It can be difficult to realize that we are more than what society chooses to label us, but sometimes all it takes is a little girl with pink hair to show you how.