I showed symptoms of neuromuscular disease at birth. Much investigation and a muscle biopsy later, no clear diagnosis was defined. When I was 7 years old, I underwent genetic testing and was finally diagnosed with Congenital Muscular Dystrophy (CMD).
CMD is a rare, genetic, paediatric disease caused by mutations in one of 30 genes and causes muscles to break down faster than they can repair.
Imagine you are taking a trip to the ballet. The lights and set are bright and colourful; the costumes and music are elegant and grand.
The choreography is challenging but graceful, expressive, and meaningful. Every movement conveys a message and tells a story to the audience through the performers’ bodies. When you think of a dancer, you’re likely to picture them to be tall, slender, and attractive. But especially not in a wheelchair.
I started my dancing journey at the age of four at a modern dance class that was special needs inclusive, where parents were welcome to participate and assist. Now, 13 years old, I’m a part of the DREAM team at the National Dance Institute (NDI) in New York City. The DREAM (Dancers Realize Excellence through Arts and Movement) Project is an inclusive, free-of-charge dance program that provides children with disabilities the opportunity to perform.
In this unique program, children with disabilities and a group of age-matched, neuro-typical peers dance in partnership, with the goal of challenging every dancer to achieve their best through teamwork, creativity, empathy, and discovery. DREAM and NDI is so much more than just a dance studio; it’s family. Along with doing the actual program, I have gotten the opportunity to represent the team in NDI’s annual gala and “Event of the Year” for the past couple of years.
In addition to DREAM, I’m able to also participate in one of my local dance studios. This is a dance studio that is a little different in that everyone can participate and I’m the only person with a disability. Because of this, I’m able to really spread my horizons and challenge myself. Even though the classes are different in many ways, they both bring joy and happiness into my life.
When I dance, I forget I have a disease that affects me in so many ways.
Disability doesn’t give or take away talent. Rather, it simply limits your opportunities. I’m able to cancel out and get lost in the movements, counts, and beats. When I started, I felt like a spotlight was put on me and it has truly changed my life.
As soon as I danced across the dance floor for the first time, I knew this was my home.
That was the moment I knew that dancing was my passion and was one of the things that made me really happy. I’m able to let any emotions out and tell a story at the same time. Especially during the pandemic, it has helped me so much. Even though I may be different and be in a power wheelchair, I look and am able to follow the moves and do the same exact things as everyone else, just sitting and in a chair.
Throughout women’s history month, I’ve taken the time to reflect on the disabled dancers that came before me, and am thankful for how they’ve paved the way for girls like me.
Written by Avery Roberts
More information on the NDI and the DREAM project can be found HERE
If you would like to submit your voice to the RARE Youth Revolution, please email our youth coordinator, James Brooks: firstname.lastname@example.org