Each year, the Pediatric AIDS Coalition at UCLA selects a theme to encompass our work for the upcoming year. It allows us to not only hone our ideas, but also to distinguish one year from the next as we continue to fight for an AIDS free generation. My freshman year, the theme was Spark: meaning to spark a conversation, a movement, a fire in our communities and ourselves. Last year, we chose Be(cause). This word was meant to encompass each individual’s reasons for being in PAC or participating in Dance Marathon, as well as our efforts to be advocates for the cause. This year, our theme is Connect.
Connect: (verb) to join, link or fasten together; unite or bind; to establish communication between.
Every year at Dance Marathon, we have a Vigil ceremony. This is the most serious hour of DM and gives us a designated time to really acknowledge how big of a problem it is that we are facing, as well as remember all the people who have been lost to the epidemic. Each year as a part of vigil we have an activity where different prompts pertaining to the cause are put on a screen and, if that prompt pertains to you, you put your hand and a red glow-stick in the air. These prompts can range from “Raise your hand if you have known someone who has died of an HIV related illness” to “Raise your hand if you feel guilty for not having a more personal connection to the cause”. The purpose of this activity is for participants to be able to look around the room and see the true magnitude of the epidemic. However, each year, we see a lot of people acknowledge that they don’t feel a very personal connection to our cause. And while no one should ever feel guilty for this, it is PAC’s job as an organization dedicated to raising money for HIV prevention and fighting stigma, to make participants feel connected. This connection is what will lead people to support our work and hopefully inspire them to join us in our fight to reach an AIDS free generation even after their 26 hours in Pauley Pavilion are over. So the question we’re left with is: how do we inspire our community to connect with our cause?
If we twist the parts of the definition of connect around, we find some part of the answer. In order to create a connection, to inspire a community to unite, we must establish communication. In other words, we have to talk to each other.
However, HIV isn’t an issue that the majority of college age students today feel a connection to or feel comfortable talking about in their everyday lives. There are still 36.7 million individuals living with HIV: approximately 1.8 million people who were newly infected in 2016 and 400 babies that are still born HIV+ every day. Despite all of this, the AIDS epidemic is commonly viewed as a problem of the past. These numbers are good tools to use when trying to convince someone that this is still a relevant issue in the world today; however, in order to inspire people to join our fight and feel a personal connection, we have to give them more than just statistics. Instead, we have to share our experiences with those who may not have had them. We have to tell our stories and form relationships, not just share our statistical knowledge. Anyone can look at numbers, but truly becoming part of something involves this relationship that we strive to create.
The story of my personal passion for HIV research and prevention began with the death of my uncle from an HIV related illness in 2001. Although the story of my uncle and my personal connection to PAC’s mission is one I am not afraid to tell, not everyone feels the same way when it comes to sharing their experiences. Because the stigma that surrounds HIV is so pervasive, it often takes a great deal of bravery for individuals who are directly affected to speak out about their lives. However, as advocates for our cause and for those who are not only infected by HIV, but also affected, everyone in PAC has an obligation to not only share our stories, but also to provide a platform where others can tell theirs.
Each quarter PAC hosts mentorship events for local children who have been infected or affected by HIV/AIDS. Here, we play games with the kids, eat with them, and just spend the day getting to know them (the same kids also often come back to mentorship multiple times, allowing them to create real and lasting relationships with members of PAC). Being able to get to know these kids during these events is an incredibly inspiring experience as they are some of the bravest and most open individuals I have ever met. Our relationships with these kids automatically give us an even stronger connection to the cause as they give us a face to attach to our work. By making these connections, we can avoid discussion of our cause as an abstract concept. Instead, we have someone to fight for, in a more tangible way.
Each year at Dance Marathon, PAC attempts to share some of these same experiences and relationships with the event’s participants. Some of the kids from mentorships and ambassadors from Camp Kindle always attend Dance Marathon where they dance, laugh, play, eat and talk with the thousands of other participants (Camp Kindle is one of PAC’s beneficiaries and is a summer camp for children who have been infected of directly affected by HIV/AIDS). The kids -who range in age from 5 to 16- exude endless amounts of enthusiasm throughout the event. Even when they speak during vigil, fearlessly sharing their stories, their struggles, and their realities with the crowd in a more serious manner, it is easy to see their passion for these issues and understand how HIV really affects their lives. Just making friends and being themselves, they are able to inspire and unite everyone present. Even those who may have felt that they didn’t have a personal connection to the cause at the beginning of DM, now have someone tangible to fight for and a reason to connect. 26 hours can seem like a long time, but these kids are the reason we all fight to stay on our feet.
It is these relationships and the empathy that comes with them that drive us to fight, that keep us from getting tired or giving up, and that will enable us to reach an AIDS free generation. So talk to people, listen to their stories, ask questions, and connect.
“When there’s a cure, we’ll dance for joy. Until then, we dance for life.”
Written by Paige Black