Traveling is one of the many luxuries people enjoy in life. And, there are several ways we can transit from location to location. However, having spinal muscular atrophy (SMA) challenges the option of traveling. This of course can be situational. However, many of us who are wheelchair-bound rely on special seating, which limits many traveling options available.
When I was a child, traveling wasn’t a burden. My body was more limber, and my spine wasn’t as severely curved. Being lifted into another seat, whether it be in a plane, car, bus, or train, was simple. SMA hadn’t intruded my body to its full capacity, yet. There weren’t many limits to what I could and couldn’t do except for walking. With a little help from others, I was able to experience the enjoyable gifts of life with little to no stress.
Presently, those luxuries remain a distant memory. Traveling as an adult with SMA is not an easy endeavor. If I were to travel today, I would require my wheelchair at all times. Sitting in another seat is not an option. I don’t have the strength or posture to support myself elsewhere. If I were to travel by vehicle, it caused discomfort after exceeding 5 mph.
In addition, if I’m traveling farther than the allotment stated above, stopping at hotels is a must. And with the amount of equipment I need to travel, it becomes extremely taxing. I also have to carefully manage what I eat or drink while traveling, because going to the bathroom at gas stations and restaurants is not ideal, or simple. Meanwhile, breaking up even a 12-hour trip over 3 days is exhausting, and not worth the stress on me or those caring for me.
Nonetheless, the desire to travel hasn’t dissipated. I still long to go on trips and enjoy vacations with family and friends. Many of my loved ones live out of state, and having the option to visit them would be a blessing. I’ve also had job offers that involved traveling, but unfortunately, turned down, knowing I couldn’t endure it.
Read more about therapies for SMA
You would assume in 2022 there would be a feasible way for those of us dependent on our wheelchairs to fly on a plane. However, that isn’t the case. If I were to take a trip, my wheelchair would have to be broken down and shipped out the same as my luggage. In comparison, that would be like dissembling a $30,000 vehicle and risking it getting damaged. Anyone sensible enough wouldn’t risk it, because they know the value of it. Meanwhile, wheelchairs are just as valuable. I’ve heard many stories where my friends’ chairs came back broken because they were handled carelessly. And, If we don’t have a chair awaiting us off the plane, we are stranded.
For many of us, resorting to a temporary, manual chair isn’t an option. Our chairs are customized to our specific body shape and posture, and without them, we can’t function.
Nevertheless, I hope there will be an airline that accommodates space for wheelchairs to travel in the near future. It would make traveling much more inviting and less stressful for those of us who use wheelchairs.
There have been a couple of nonprofit organizations that tried to create an airline for the disabled to have access to. However, there wasn’t enough attention, or funding, to see the idea manifest to completion. I understand that this situation could appear minute compared to other important things that need recognition in this world. But, to those of us who can’t travel because of the lack of engineering design, it’s huge.