They just don’t get it

Posted by Allen Rucker in Life After Paralysis on April 12, 2018 # Mobility

Reconciling a disability with your sense of self can get pretty tricky, especially given the messages, subliminal and otherwise, thrown at you by the non-disabled world. No one I know wants it to be the defining feature of their existence, as in, Allen “Poor Fellow In A Wheelchair” Rucker. On the other hand, it’s certainly not something to be ashamed of or feel forced to explain or even acknowledge at every social turn. The truth is, depending on the context, sometimes I play it up and beat people over the head with it, usually when I’m politicking for disability rights. Other times, I completely forget about it. I used to say that paralysis is an immalleable, inescapable part of my identity, much different than the guy who broke his leg falling off a ski lift and can laugh about it. Now I’m not so sure that’s a valid comparison. I am the guy who broke his leg skiing. I’m just that guy every day for the rest of my life.

The recent death of physicist Stephen Hawking has become a touchstone, at least among disability advocates, to lambast the general perception of the disabled, all those messages I’m talking about. Every news story or obit about the brilliant Dr. Hawking was an ode to his genius and his will to live, all the more so since, as stated ad nauseum, he had to overcome such a “debilitating disease,” had to “live inside the shell of a…useless body,” and in the ham-fisted prose of the Los Angeles Times, was “chained to a wheelchair.” Yikes. That sounds like a worse fate than Charlie Manson. At least Charlie was only in chains when he went to lunch.

The worst offender of all was probably the cartoonist who thought it was touching to draw Hawking at the gates of heaven, standing tall, heading toward the Hereafter, with his nearby empty wheelchair only a sad relic of his hell-on-earth mortality.

Of course, Stephen Hawking didn’t believe in an afterlife, and like the rest of us “chained” to a chair, would have sneered at this schmaltzy liberation from pain and suffering. The man lived 76 years and whatever pain and suffering he endured, it certainly didn’t define his life. He made historic discoveries about the nature of the universe. He went on “The Simpsons” and made fun of himself. He had three kids. He no doubt experienced many of life’s pleasures in his own way and style. He was, for one, a snappy dresser.

The offense here is clear, a simple equation even laypeople can grasp. Disability = Bad. Disability = a cruel fate and constant agony and shame and less-than and a state in which you can’t wait to die and be free of. “No, it’s not!” any sane person with a disability will tell you. It’s not life in prison without parole. It is periodically a pain in the butt and certainly invites its own health concerns, but there are enormous areas of life in which it doesn’t matter a hoot. There are even occasional benefits. Stephen Hawking said his condition gave him more time to think about the cosmos. And probably drink good Scotch.

The image of Dr. Hawking scrunched up in that chair, speaking through that electronic voice box, was horrifying to many non-disabled people, most of whom wouldn’t know a black hole from a brownie. That blanket revulsion is solely a matter of their ignorance, their fear, and their unconscious prejudice against anyone different than what they consider “normal.” It’s a deep, dark impulse -- probably buried in the recesses of our lizard brain – but it is nonetheless stupid and hurtful and terribly unfair to one-fifth of the American population, not to mention a pathetic way to eulogize Stephen Hawking.

For most of those people, including Dr. Hawking, a disability is normal, as normal as your expanding waistline or balding head or chronic lumbago. Why can’t the people who write odes and obits get that message? Beats the devil out of me.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.