50 Years in a Wheelchair Gives Author No Time for Pity

The author says he plans to
The author says he plans to "dance through life until hell freezes over." (By Kathleen Purcell)
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By Gary Presley
Special to The Washington Post
Tuesday, December 2, 2008

This month I began my 50th year of riding a wheelchair through life. In case you're wondering, everything is all right down here.

That's what I found myself thinking recently as I sailed through a shopping mall. "Look, Mikey! It's magic!" a tiny girl exclaimed to an even tinier boy as she spotted me. It was a reminder that most of the creatures I greet at eye level are either small children or large dogs, two of the better examples of God's work.

What that little girl believed about my power wheelchair was true for her and true for me. It is a magical thing. This one, my seventh, I call Little Red. She is a sturdy tool, very different from the fragile roll-about I came home with from the rehabilitation center five decades ago, having been left nearly quadriplegic by polio. Little Red is 10 years old, chipped and nicked and bent, but so powerful, so reliable, that the phrase "confined to a wheelchair" is not only demeaning but inaccurate.

The wheelchair is freedom.

Over the years, we have become one, Little Red and I: cyborg. After all this time, she seems to move in response to my simplest wish -- cradling me sweetly, all power and promise, rolling me toward another adventure.

Yes, everything is all right down here, "boob-high to the world," as my wife calls the place I occupy. Of course, like almost everyone else, I ache in spots I didn't 20 or 30 years ago, and I'm always a little short of money. But I have no reason to complain. I find the world growing a little friendlier each day. Architects and builders are talking about universal design, a concept that could turn a visit to a friend's house into something other than a ramp-toting expedition. President Bush signed the ADA Amendments Act, which clarifies and broadens the definition of disability to better protect people with disabilities from employment discrimination. We're making headway in corporate America, in entertainment and in politics: more visible and accepted, a few more of us productively employed.

On the other hand, maybe life has always been good down here, at least for me, and I have been slow to recognize it. Maybe it took me too long to understand Mr. Lincoln's opinion that "most folks are about as happy as they make up their minds to be."

So if you see me rolling through your life, smile. I'll smile in return. Good karma, right? Don't be a boor. Don't lean over me and ask, "What's wrong with you?"

Only small children can ask that question and get a fair answer from me, one I try to fit to their level of understanding. Their mothers are sometimes embarrassed, but I don't mind. I smile and open the child's eyes to the magic in my world.

For people who should know better, who see me as an object of curiosity, I have nothing to offer but a bland smile. I suppose I could explain that I am more like you than you want me to be: an embodiment of the secret fear that the world often spins out of control. But you need to discover that for yourself.

Do one more thing for me. Forget pity. I hate pity. Put your pity into words, and you will fracture someone's carefully crafted self-image. I defend my own self-image by refusing to be angered if I sniff pity coming my way. Letting go of anger is one more in the never-ending series of riding lessons I've learned over the years.

Don't pity me, and don't worry about me.

Of course, like most people with mobility impairments, I will always appreciate more curb cuts and ramps, more accessible bathrooms and automatic doors, uncluttered store aisles, tables with knee clearance in restaurants, and especially more houses, condominiums and apartments built for accessibility. Hey, I even appreciate simple little courtesies like not jumping up and blocking my view when the Eagles are in concert. I may be sitting down, but I intend to dance through life until hell freezes over.

And like other people who have evolved from being "an invalid confined to a wheelchair" to a man advocating for such important issues as MiCASSA (the Medicaid Community-Based Attendant Services and Supports Act), as I have done for the past 10 years, I cannot forget that people with disabilities are among the last awaiting full integration into society.

I am one of a group once segregated by circumstance. That's the significance of my story: that people with disabilities have made great progress in the last generation, and even though there's much left to do, especially in the realm of employment, things continue to change for the better.

But for me, rest assured: Everything is all right down here.

Gary Presley is the author of "Seven Wheelchairs: A Life Beyond Polio" (University of Iowa Press). Comments: health@washpost.com.

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