It’s been suggested I apply for a new wheelchair every 5 years. As a child, this was always an exciting event. Getting a new chair was like receiving a very expensive, new toy. Seeing the rainbow of color swatches I could choose from made me happy. And, as a child, I loved to go fast. It was important to me to keep up with the other children in the playground.

With each upgrade, the chairs advanced in speed and technology. This made the transition to a new chair more desirable, and less difficult to let go of the old one. Having almost full control over how I wanted my chair to appear gave me a weird sense of belonging. There weren’t many things I had control over, living with spinal muscular atrophy (SMA). So, being given responsibility for choosing the way I get around in life felt quite liberating. 

However, at age 35, that once liberating feeling is now a feeling of restriction. Currently, I’m at the 5-year mark for receiving my new wheels. But, fitting in a new chair isn’t as simple as it was during childhood. 

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SMA causes muscles to atrophy, bones to twist, and necks to weaken over time. It’s been a challenge to find comfortable seating that meets my physical abnormalities. Unfortunately, these chairs are made to adapt to someone who can sit upright, or doesn’t need to make many adjustments to compensate for the discomfort. Meanwhile, sometimes it can take weeks, or even months to adjust to a new chair. 

And although our chairs can be customized, they’re only adjustable to a degree. There is a standard cost limit insurance won’t surpass. The adjustments are very limited, and any additional equipment that isn’t on their policy comes out of the patient’s pocket. Which, in most cases, aren’t attainable because adaptive technology can be very costly. 

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I must sound like a broken record; however, the standard chair models offered, aren’t sufficient for every disabled individual. There are many private companies that will make a chair from top to bottom, but for most families, the cost is beyond affordable. However, if insurance would consider covering the cost of these fully customizable wheelchairs, disabled individuals wouldn’t have to transition as often. And insurance could save on additional equipment that most often isn’t utilized with the standard chairs. 

My wheelchair is a part of who I am. Out of every piece of equipment I have, my chair trumps them all. Without it, my independence would be severely limited. The chair acts as my legs to get me where I need to go. For the amountof time one spends in a wheelchair, it’s extremely important that it fits like a glove. It compares to someone buying a vehicle. One wouldn’t purchase a car unless it fit specific criteria. It should feel comfortable driving, safe operating it, and it should give sustainable mileage for the wear and tear that it will use. If I’m not feeling secure in my chair, I’ll literally be off the radar. My chair goes with me wherever I go, and being able to build one tailored to fit precisely, would only make sense in my opinion. 

In addition, my chair is very large. It has a wide base. It takes 2-3 large men to lift it into a house. This wasn’t a huge concern when I was younger, however, now that I’m older, I rely on my chair much more. The only place I can sit comfortably is in my wheelchair. I don’t have the same posture or balance as I once did in my adolescence. It was easier to transition from my bed to the couch, or a regular chair when I was younger. But, unfortunately, that’s not a possibility anymore. 

Meanwhile, my current living conditions are not ADA-modified. Therefore, moving a large, heavy wheelchair around is very challenging. It also makes it difficult to visit family and friends because the majority of homes are not wheelchair-friendly.

I wish there was a better solution to resolve these issues. If there was a way to access wheelchairs that are lighter, less bulky, and affordable, that’d be ideal. It’s hard for me to wrap my head around why things that are so essential are so expensive. If less generic equipment was handed out for those with rare disabilities, it would help reduce other unnecessary costs. And it would help accommodate all different living conditions by molding their needs to their own specific surroundings.