Real Life Stories of a Disabled Mom: Freedom is Spelled WHEELS
“You’re getting around great, aren’t you!” To be blunt, this is one of my least favorite comments from random able-bodied people I encounter as a disabled mom. Yes, it’s low-key condescending; but the thing that stuck in my proverbial craw (does anyone say that anymore?) is that it wasn’t true.
Wheelchairs, powerchairs, scooters, and a variety pack of walking-related tools enable mobility. They make freedom of movement and independence possible; when they work. I will be the first to tell you I have enough disability-related accessories to make me Cerebral Palsy Barbie. They all make our lives easier when they work. But the centerpiece of my accessible arsenal was inconsistent.
Towards the end of 2020, I got a new scooter. It was sassy, faster than I ever had; it even had a built-in cup holder. I was excited that it would get me where I needed to go faster with less lingering… Maybe it would take my 15-minute masked grocery runs down to 10 and have room for my phone, keys, or a drink.
But the honeymoon period didn’t last long. After some time, it started to just stop, speak to me through beeps and require six or seven rounds of turning it on and back off before it would start to move again. Initially, It would go the same speed, but gradually the maximum speed declined to 20% of it’s predecessor’s max speed. We saw each other so much; I was on a first-name basis with my wheelchair repair guy. It eventually died completely while I was out with my kids. Color me disempowered.
Through the magic of research, I found out that after a number of repair appointments with no solutions rendered, my wheels were a lemon. Through all the supply chain nightmares of 2020/2021, I received a working new floor model scooter. In the same model, I went through nearly the same experience in a shorter period of time. Unfortunately, it stopped working while we were on vacation.
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Luckily disability breeds ingenuity; we found a backup manual chair, so our vacation, while less independent, was still possible. I called my favorite wheelchair repair guy. It would work for a short time, but wasn’t consistent. I knew all the error beeps by heart. Thankfully the manufacturer honored the warranty, which covered most of the scooter guts. As of this spring, it had a new controller and new motors. But the joy of finally going full speed lasted about five minutes until it stopped on a brick walkway.
Everything had been replaced, and nothing was left to do but deal with it. Having inconsistent wheels was more than an inconvenience. The mental load of knowing a trip to the library, grocery store, or to drop off and pick up my little ones would be fraught with frustration made life harder. Since using four-wheeled scooters in 2000, I have felt secure that I could get to most places. With this scooter, I was anxious even going to the library around the corner with my kids.
A new scooter was the only way to restore my freedom and mental health. Even making the order, I felt my spirit lighten. And a year to the day that my second lemon died for the first time, The box with my scooter was delivered. A souped-up version of my original preferred unkillable four-wheeled scooter model. I felt like my kids on Christmas. The right wheels are freedom, one I won’t take for granted.