From MDA Summer Camp to CureSMA: How I Found My Community and My Voice

I was five years old when I met someone else who had spinal muscular atrophy (SMA). I met them at the Muscular Dystrophy Association (MDA) summer camp for kids with neuromuscular diseases. The drive from our little town to the summer camp took three and a half hours, so I was grumpy, hungry, hot, and I didn't want to leave my mother's side.

A first encounter at MDA summer camp

I was sobbing as we pulled up to the cabins (affectionately called the quad because four cabins surrounded a large tree). I saw a little girl in a red wheelchair playing with bubbles on a folding card table under the tree. As soon as I was placed in my chair, I wheeled myself over to her, and I screamed in the most excited voice, “Oh my God, your chair looks like mine!”

She had one of the softest voices on the planet. She said, “Yeah, we match! That's cool.”

From that moment on, my parents didn't exist anymore; I didn't even say goodbye to them as I chatted with my new friend. Her name was Melissa, and she actually was from a small town near me, but we related in so many ways because she was also the only person in a wheelchair where she lived. We were in Cabin D, and the cabin was split into two different sides. Melissa and I, plus another girl, Amber, were on the left side of the cabin. Three other little girls with varying disabilities were on the right side. The three of us girls on the left side ended up being called “The Three Musketeers” because we would do anything and everything together and always asked to be in the same cabin. Every summer until I turned 21, I looked forward to going to summer camp. I constantly talked about summer camp with people I met in passing.

Discovering the power of the disability community

My experience at MDA Camp taught me that my disability wasn't the only one, and there are so many different types of people with different abilities. It also taught me that being disabled wasn't shameful or bad and that I should be proud of the accomplishments I make in spite of my disability. I didn't know that I was missing a community. I had no idea how isolating being the only disabled person around was until I had it for those glorious 7 days at the MDA Summer Camp. I will forever cherish those years.

As an adult, I attend a summer “camp” every year that CureSMA sponsors. Okay, it's not camp; it's a convention, and it's in a hotel, not a cabin, so there's running water and stuff and not a communal bathroom where everybody sees you showering. The convention provides much more than a yearly meeting; the community offers resources, fundraising, life hacks, guidance, and moral support. It has filled the sense of community I used to get as a child attending MDA camp. I count myself truly lucky to have found another community that has the same values and goals as me as a disabled person with SMA.

From camp friendships to lifelong advocacy

Instead of a child learning to live as part of a community, I am now an adult who works extremely hard for the community. I now advocate for people with SMA and other disabilities for our rights and needs. I will forever be grateful for that first year at camp and the friendships with those campers that have lasted a lifetime. My life was shaped because of them, and my goals were first imagined when I realized I wasn't the only person with SMA in a wheelchair and that there were others like me.

MDA camp started a need in me to have other disabled people in my life. It gave me the reality that I am not alone in any fight, and that together as a community, disabled people are stronger. Because of that little spark as a child, I have spent my life seeking out communities that strengthen and enrich my life. I hope other young disabled children have the same opportunities and experiences to know they are not alone. There is a big, wide world out there filled with other disabled people, and we deserve to be included in every community.