A friend of mine said he felt nauseous the first time he saw me in a wheelchair. Not because I hadn’t showered in a week, and not because he thought less of me, but for what the wheelchair represented to him: a death sentence. Before ALS, I would almost certainly have agreed. Wheelchairs are an obvious sign that something is wrong. Truly, when you see my towering headrest, you know the proverbial rubbish has hit the fan.
But even if the situation is not life-threatening, society has placed a stigma on anyone who uses a wheelchair. Watch the faces of other patrons in a restaurant when someone with a chair rolls in. In my experience, most people either avoid eye contact or stare uncomfortably with a look that says, “I wonder what’s wrong with that poor bastard.” For someone with a progressive illness like ALS, such a reaction can increase reluctance to get any kind of assistive device. It’s hard enough to admit you need one, much less take on the condescending perceptions of others.
Frankly, the medical equipment manufacturers aren’t helping the image. They have company names and products that are either falsely upbeat or downright insulting. I used to ride around town on a Victory Pride scooter. As in “you’ll be a real winner if you swallow your pride and ride this thing in public.” Funny, I don’t recall getting any blue ribbons. We also have a lift to hoist me off the floor when I fall. It’s made by Invacare. How ingenious! Invalid care. Manages to be clever and depressing at the same time.
You might be surprised to learn I can still walk a few steps with my Evolution walker. Hmmm. Perhaps I’m not slowly becoming paralyzed after all, but rather evolving into a higher being too superior for any bipedal baloney. Or maybe amphibians could have used the Evolution walker to assist their transition from water onto land? Or maybe ALS is giving me too much time to think.
Regardless, the walker is fast becoming a thing of my past. I rely on my power wheelchair now, a Permobil Corpus 500. I really dig the Permobil part, like it can help keep me permanently mobile. But Corpus? A little to close to ‘corpse’ for my comfort. Still, it’s a mighty fine wheelchair (it should be for $30,000+ retail). I can tilt, recline, raise my feet, and elevate up to 8 inches. Top speed is about 6 mph and it corners on a dime. People often comment on my excellent navigation skills with a joystick. My secret? Twenty-five years of playing videogames. (Some Atari 2600 anyone?)
I’ve been using my chair for over a year. While it’s become a part of everyday life for me, I don’t think I’ll ever get used to how people react. I try not to take it personally. Most people are probably unaccustomed to being around someone in a wheelchair. And I don’t think it’s the chair itself they’re reacting to, but the assumption of loss and unhappiness suffered by the user. No doubt I’ve experienced both, though I’m much happier with my chair than without it. And I think those close to me have learned to see past the stigma and feel comfortable around me.
I didn’t choose my sentence to a wheelchair, but I can choose whether or not to embrace it as the tool it really is. We all rely on tools to make life easier, and I’m so thankful wheelchair technology has evolved this far. My chair has been absolutely indispensable in maintaining my sense of independence and freedom. Most importantly, it allows me to be a better father.