Wow, what a doozy 2020 has been. As a young adult living with a rare disorder in a pandemic, in a moment of social unrest, and a heated presidential election, I for one am going to be so happy when I can celebrate this year being over. I know that when the clock strikes midnight and we ring in the new year many of 2020’s problems aren’t going to magically vanish.
Let’s take a moment to recognize everything 2020 has taught us:
- Everyone now has a favorite video conferencing platform. In saying so, I hope we continue to use these as a way of communicating/working together safely. This pandemic has shown the feasibility and accessibility of working & schooling from home. Quarantining hasn’t hindered my ability to advocate for young people, on the contrary, I am more aware and steadfast that young people, people whose voices are seldom heard need to be amplified.
- The importance of public health is now on everyone’s minds. Meaning, personal choices affect public health. There are so many YouTube videos of hand washing, the importance of wearing masks properly, and of course the fact that before 2020 the phrase “social distancing” was a hipster way to say you don’t like being around people rather than you’d like to stay healthy.
- Advocacy organizations have overcome and banned together. At the beginning of the pandemic the organization I work for, Next Step, had to make some tough decisions. With the uncertainty and lack of information about COVID-19 we knew we needed to keep everyone safe. Therefore, we decided to postpone the Spring campferences we had planned. We expressed to our young adults the importance of health & safety and our desire to stay connected. My coworker and I started experimenting with various ways to “show up” for our participants. We redesigned all our programs; everything we were doing in person we made virtual. We wanted our young adults to know that Next Step will always be a place for young adults living with rare disorders to turn to.
Hindsight is 2020 and this year gave us a new perspective. For 2021 I am hopeful.
Seeing our young adults show up with Next Step in 2020 has given me even more hope that we will continue to show up together in 2021. Young adults living with rare and chronic conditions are learning that their voices do, in fact, matter. They are seeing more representation in government, in entertainment, and in their community. However, to see representation you must be willing to be that representation. You must find your own voice and strengthen your confidence. Find your passion and your convictions and let that drive you to knowing what you want to represent. Once you find that, fight tooth and nail for it.
Just because you are rare doesn’t mean you don’t have a voice. You do and you need to share it.
In every dark place, there is a spark that creates light. Be the spark to create some light for 2021.
About Quita Christison, MPH and Outreach Coordinator at Next Step
Quita is a young adult living with pycnodysostosis, a rare genetic disorder that causes brittle bones. She’s been at Next Step for 5 years now in different roles throughout the years. She is Next Step’s resident people person. She is responsible for connecting awesome young people and their providers to Next Step programs. She has found a way to merge her two passions of theatre and healthcare by engaging youth in expressive arts to help them take ownership of their narratives. She is all about having young people get into the conversations that matter to them. You can find her exploring new places and cultures, especially through food. She loves singing, laughing, and general noise making. Check out her TEDx talk about first impressions and implicit bias.
About Next Step
At Next Step, we work with young people 16-29 years old who are living with both the immediate and long-term impact of cancer, HIV/AIDS or rare genetic disorders. We aim to shatter the perceived limitations these diagnoses can have such as isolation, stigma, and disempowerment. We strive to elevate the aspirations through community building, music therapy, and mentorship programs. We want our young people to find their “I believe in me” moment. All our programs are free for young people and are currently virtual. You can join a program from anywhere with a good wifi signal! To learn more, visit https://www.nextstepnet.org.