I doubt if anyone else is counting, but this is my one hundredth blog for this fine web site, small fewer than the output of my blogging comrades, I’m sure, but still a benchmark for me. I love writing these small essays. I, like many of you, have a problem of living inside my head. If you were like that before you became paralyzed, then sitting in a wheelchair only exacerbates the situation. So, what do you do? You write columns about the world of people sitting in wheelchairs, including yourself.
Reading over these hundred blogs, begun four years ago, I realized a couple of things. First of all, things in general haven’t changed all that much in that time span. Even though the last recession is officially over, for instance, unemployment among the disabled is still not a whole lot better than the day George Bush 41 signed the ADA into law 23 years ago. Today about 80% of disabled workers looking for a job (called “labor force participation”) can’t find one. And one recent report indicated that during this year, it’s even gotten worse! There are a lot of initiatives out there, especially out of the Obama Labor Department, but in hard numbers, little has changed.
Also, in TV and film employment numbers, something I try to track, the overall participation of performers with disabilities hasn’t changed much, either. There are probably more headline performers with disabilities – Peter Dinklage, Emmy-winner on “Game of Thrones,” Michael J. Fox in a new sitcom on NBC, even Artie on “Glee” – but again, the hard numbers have hardly moved.
One of the first blogs I wrote here was called “The Disability Ghetto,” about the ongoing phenomena of segregating the disabled. “The disabled in America are invisible. We live in a disability ghetto. It’s not a geographic ghetto…The segregation and isolation are much slyer and harder to define…” Is it simply ignorance of our existence? Fear that we’re contagious? Who the hell knows.
One bright spot: voters with disabilities are now voting at the same rate as the non-disabled, a marked change from the past. Maybe that will help.
One of my greatest pleasures in writing this blog are the people that I gotten to know and profile. The one person with the greatest impact was probably a man I met in a movie, Jean-Dominique Bauby, a French journalist struck down by Locked-in syndrome. The movie was “The Diving Bell and the Butterfly,” directed by Julian Schnabel. After watching how this man responded to the very worst of physical disabilities – he wrote a book by blinking – it’s nearly impossible to feel sorry for yourself, no matter how bad the cards you’ve been dealt.
And then there was a true pioneer in the entertainment business, quadriplegic actor-writer-black humorist, Jim Troesh, who passed away two years ago. What Jim learned early on, I said at the time, was that “in his condition, it was easier to make people laugh than cry, and when they were laughing, they no longer saw him as some pathetic soul who couldn’t cut his own meat.” Jim died before he could write the movie about his life. Someone should.
In any case, if anyone has profited from these blogs, it’s probably me. Nothing much on the outside has changed, as I mentioned recently, but I can see how my responses to my predicament has gradually evolved. Here’s a short list:
1. I move more slowly and more carefully. I’ve learned to practice, as one writer put it, “constructive paranoia.” Be paranoid about the small things that can do you in, like a bump in the sidewalk or a wet bathroom floor. Proceed at all times with caution for your own health.
2. I have thicker skin. I don’t go looking for ways to be offended. Everyone in the world is not out to give you a hard time; they just act that way sometimes. I’m less sensitive in general about being paralyzed. Paralysis has gone from THE turning point in my life to simply A turning point. Big dif.
3. I have a less hairy hair trigger. See #2. You’ll live longer and with much less stress if you laugh off the person at the airport who uses a wheelchair solely to get to the front of the line. Part of this process is learning not to see yourself as “special.” You can’t be “special” and “normal” at the same time.
Of course there’s one conundrum in this disability business that’s hard to get around – as long as I write about disability, I’m thinking about being disabled and as long as I’m thinking about being disabled, I can’t transcended defining myself that way, which is unhealthy. In some lifetimes, I guess, you just can’t win.
© 2013 Allen Rucker |
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The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life