Identifying yourself as disabled

Posted by Allen Rucker in Life After Paralysis on May 16, 2017 # Health

I’ve been paralyzed for 20 years and seven months, to the day. For the first five or six of those years, I wanted to have nothing to do with anything or anyone disabled. My reasoning was clear. I didn’t want to join the freak fraternity. People in this frat are considered outsiders, and a little strange, to most non-disabled Americans. After a century or more of trying to change that perception, we may have moved a couple of yards down the field, but we’re still a long way from dancing in the end zone.

The whole issue of identifying yourself post-paralysis, especially to yourself, is a bit of a double bind. If you admit you’re an aberration from normality, you’re reinforcing the stereotype. If you refuse to admit it, you’ll isolate yourself from others like you. You’re stuck.

Lots of people have strong feelings about ignoring their impairment. The wheelchair-using governor of Texas, Greg Abbott, is so leery of being identified as disabled that he won’t even meet with disability advocates. There are noted actors with disabilities in Hollywood who feel the same way. And how do you argue with them? There is no law requiring them to join the team. This is America. There is no law requiring you to join anything. Plus, they may have a point. I don’t want you to see me as disabled. I want to see me as me.

I find that, over time, I’ve taken on a dual identity, a split personality. When I am alone or among friends or family, I am not strange or different. I’m the same pain in the backside I was before I was paralyzed. Most of my social time, I’m disability-free. If I’m arguing with my brother about Donald Trump, I’m just another blowhard in the room (though I’m usually right). The same with reading a novel or cooking a meal or watching “Better Call Saul” on Netflix. Binging is an equal opportunity time-waster.

Yet, after those early years, I slowly got sucked into the whole disability thing. I became a professional crip. I wrote a memoir, now write blogs and columns, plus attend way more meetings and events than I ever signed on for. If there is a disability panel within a hundred miles of my house, I always say yes when called upon. If I don’t, I feel like a shmuck.

Now, half the time I’m a man with no disability and half the time I’m a man who wears it with pride. A reader of this blog once wrote me after a post where I argued that the “I-have-no-disability” attitude is the heathiest mindset. “Oh, come on,” he said, “if you weren’t paralyzed, you wouldn’t be gabbing about it all the time.” Knowing he was on to something, I didn’t write him back.

Ever wonder why recovering alcoholics often become alcohol counselors, or ex-gang members give speeches to grade school kids to scare the hell out of them? It’s a well-worn path and most likely satisfies what psychologists call PIL – Purpose in Life. As I’ve written before, many studies show that being focused on a purpose greater than yourself is good for everything from depression to phlebitis. PIL can even slow down the process of senility, a state that some of us see just over the next hill.

It sounds simple, doesn’t it – just get out there and find a dang purpose! News bulletin: for some, it’s not that easy. Many people have no purpose except to get through the day and others confuse purpose with a passing diversion or duty. How do you know you have a “real” purpose? I think it’s like pornography – you know it when you see it.

What started out as avoidance behavior – avoid anyone who looks like me -- morphed into an avocation of fifteen years and counting, something I feel connected and dedicated to. I grouse about the obligations sometimes and just want to get back to things that have zip to do with paralysis, but -- to quote the noted philosopher Silvio Dante from “The Sopranos” -- “they pull me right back in!”

That reader who wrote that note was right – if I wasn’t paralyzed, I wouldn’t be doing a ton of stuff I really like to do. Despite this annoying wheelchair, or maybe because of it, I’m a lucky man.

© 2017 Allen Rucker

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The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life