Am I in Control, or Is My Chair?

Years before the pandemic, I was visiting a museum in Washington, D.C. A young child looked at me and my high-tech wheelchair. He then asked my mom, “Is he real?”

I have to think from his perspective. We were at a technologically advanced museum. He probably thought that I was an animatronic controlled by a cool vehicle. As a child, who didn’t expect to see anything their mind could imagine at a museum? I know I did.

It was just an innocent question from an innocent little boy. This question had a lot more depth than he realized, however. Am I controlled by my chair, or do I control it? You would be surprised how many grown, mature adults get the wrong answer. They revert to being little kids, seeing only my chair and other technology. They don’t see the actual person and living soul inside.

Instead of thinking “Grow up, people!,” I need to see it from their perspective again.

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Reality has a way of tricking us. Even a part of me gets fooled when my chair seems to take on a life of its own. Every once in a while, my chair goes out of control and I bump into the wall. This happens when my hands get sweaty and my driving controls get wet. Thankfully, bumping into the wall is a very unusual event. It does mean that I need to keep my hands dry and wiped.

With safety precautions, a power wheelchair is nothing to be afraid of. Yet still, the question arises: “Does the chair control me more than I control it?”

First, I can’t tell you how much energy and effort I’ve put into getting my chair just right for me. Fellow SMA News Today columnist Brianna Albers recently wrote about how it’s total “agony” to get fitted for a new wheelchair every few years. I completely agree. You get so used to the old one. Plus, any small change can bring multifaceted problems when you have a rare disease.

One particular issue for me is making sure that my headrest is in the right position for me to be able to talk. Another has been inventing the technology I need to be able to control my chair. Yes, I said “inventing.” With the limited movement I have in my fingers, just giving me a joystick or any other common controls simply won’t do.

For years we tried controls that I just couldn’t use. My family and I became frustrated, as well as exhausted. Eventually, we found a wheelchair repair company that was willing to think outside the box. The company owner was like a mad scientist, in a good way. She took me into her workshop and spent the whole summer and fall working with me. For months, she just observed my finger movements and experimented.

Those were endless summer days, filled with trial and error. Many ideas had to be scrapped. A lot of my test driving had to be done outside. The sweltering temperatures made the strong emotions even more heated. I endured it all in stride. No matter what, I simply had to find a system that would allow me to drive my chair independently. The owner of the repair shop was equally determined.

It was a battle that we would win.

After six months, we finally made it past the finish line. The owner came up with an ingenious system of using fiber-optic lights on my chair. The slight movement of my fingers would pass through individual infrared lights coming out of fiber-optic wires. Depending on which light my finger passed through, I could determine which direction my chair would go.

After 19 years, I may have changed chairs a couple times, but I still use the same system to drive. Today, there are some other people who use fiber optics to drive. Look into it if you need a system like this.

The technology has been greatly improved over the years. Now, not only do I use this system to drive, but — as I have written previously — I control many things in my room with it. I can control my computer, TV, lights, and a lot more.

After all of this hard work and sacrifice, I deserve the right to say, “Yes, I control my chair.” It’s not the other way around. As columnist Halsey Blocher said, “My wheelchair is a tool that allows me to live a full, abundant life.”

With technology giving independence to those of us with rare diseases, what a “full, abundant life” it is!

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.