I still remember the first day I played power soccer. I was playing a sport designed for someone like me for the first time in my life. Life with Spinal Muscular Atrophy is typically an exercise in accommodation. Something as commonplace as an uneven sidewalk can make a nice and easy stroll a dilemma. What do you do when you find a sidewalk that might be a little bit too bumpy? You find a way around. You accommodate. Going down that particular street might be a lot more convenient, but the convenient way is not always the life with SMA way.
Finding a job is something else that is relatively commonplace, but it takes some accommodation to make it work when you have SMA. I hire a driver to bring me to the office. That takes planning and coordination beyond rolling out of bed and driving to the office at the last minute. I use talk to text software to dictate every one of my emails from my cubicle in the middle of an office. Even something as simple as the convenience of writing a private email to my boss is not always possible because there are people around. Does that mean I can never speak my mind? Certainly not, but it requires accommodation. Maybe I wait until nighttime when I am home to be able to dictate my emails in private. I get the job done, but it is a little bit different.
You can imagine my joy in finding a sport that did not require any accommodation. Obviously, power soccer is classified as an adaptive sport, but the game itself is the same for everyone on the court. I do not have different rules or special rules because I use a wheelchair; the rules are built for people using wheelchairs. I play power soccer just like everyone else who plays power soccer. For someone who has become very comfortable trying to find ways to do what I want, sometimes it is nice to go somewhere where I know I do not need to even think about accommodations. It is me, my teammates, our opponents, the soccer ball, and a set of rules that fit just right.
August is SMA Awareness Month, and I think that many people often do not realize that people with SMA can do just about anything, but sometimes it takes a little creativity. It may not always be as dramatic as literally creating an amazing sport perfectly tailored for people with SMA and other disabilities. It may be as simple as crossing the road to find a better sidewalk or remembering to bring your portable ramps so that you can get into someone’s house.
I recently turned 30, and you would think that I would have a pretty good grasp of how to do this life with SMA. I am very grateful for the life that I have, don’t get me wrong, but there is always another creative pathway that needs to be found. There is always something I have never run into before that I have to figure out. It is very nice to have the breaks when you find something like power soccer that does not require a creative solution and already fits. It is great to find a beautiful bike path that is smooth and wide. But even if that nice smooth path does not exist, it does not mean that we can slow down and give up. Instead, we keep accommodating and keep accomplishing.