Traveling is an important part of life. While many take this ability for granted, it is next to impossible for those like me. I can take advantage of all the other modes of transportation, but airplanes are behind the times. I am unable to remain in my chair during a flight. There is an organization called All Wheels Up that is working toward making this possible, but it’s not a reality yet. I want to advocate for this important movement.
My body doesn’t work, so my chair is my body. I can’t do anything without it. If an activity doesn’t have wheelchair access, I miss out. Unfortunately, this is the case with planes. When I was younger, I sat in an airplane seat without much trouble, but it has been undoable ever since my spinal fusion surgery at 9 years old. In fact, on the cross-country flight home to Oregon from my surgery in New Jersey, I had to lay on the floor. I have not flown since. It is the equivalent of asking an able-bodied person to remove their arms, legs, and muscles used for head control, and store them in the cargo hold.
You can only imagine how much I’ve missed out on as a result. I rarely leave Oregon, and the farthest I can realistically travel by car is the Los Angeles area, or anywhere else within a two-day drive. Traveling is not easy, regardless of the transportation mode. But being excluded from the most expedient method of traveling long distances prevents me from many endeavors. For example, I can’t attend most SMA conferences. Even worse, my family is going on a Bahamas cruise, but I can’t go because I simply can’t get to the port. It is my dream to travel around the world, but I have never left the country.
It blows my mind that we live in a world that touts how progressive it is, yet this has somehow slipped through the cracks. Equal rights are a big blip on everyone’s radar. It seems like someone is always protesting something, but where is the public outrage over this issue? Ninety percent of the world is cut off from me. Why is this not taken seriously?
I realize that SMA affects each person differently and that some can fly. But whether you are affected by this problem or not, I encourage you to join me in this movement. If the proverbial squeaky wheel gets the grease, it’s high-time to squeak up and demand change.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.