The Disabled --- Such Interesting People

The other night, I was living independently, using my electric powered wheelchair, happy as a clam. It had been a good day. My writing was going well. I had driven my car to the library in the afternoon, cooked myself a dinner and now I was getting ready for bed.

And then the left rear wheel fell off my wheel chair. No movement was possible: when I gave the chair power, the left axle would just grind itself into the oak floor. There I was, naked, all alone, and marooned twelve feet from the telephone.

If I were to save myself, I had to get to the telephone and to do this, I would have to "crawl." I once knew how to get safely to the ground from my wheel chair. This was done by crossing one leg over the other, turning in the chair, and sort of backing off onto the ground. This is what I tried to do the other night but I have lost strength and I just fell to the floor, all legs and arms in a tangle. Fortunately, no bones or tendons were damaged.

By lying on my stomach, I was able to drag my body, inch by painful inch, to the telephone and the help I needed. It took me an hour and a half. The effort left me badly shaken and my muscles were sore and my skin was bruised and burnt.

There are times when it is all just too much. One moment you are independent, able to deal with life, the next you are on the floor, stuck, helpless as a baby. Dignity, self esteem, all that evaporates, goes up in air. There you are, out in the world, competing with the able-bodied, kicking ass, and then of an instant, zap, you are a pathetic cripple.

It is a life of contrast: at the same time you are both a master and a wimp. You are a live, active player and, concomitantly, you are engaged in a private struggle, fending off the wily advances of disability, helplessness and death.

And even more confusing is the fact that an episode like the other night is a real life adventure. It is an unexpected test of grit and courage. My crawl across the living room floor to the phone was, in its way, as challenging, daring and dangerous as Edmund Hillary's ascent of Everest. I will bet the sense of achievement I felt when I reached the phone was just as great. There is a rush of confidence: I will survive; I will prevail. This is a rush of pure joy at just being alive. Flowers, sunlight, loved ones are seen with a new intensity.

This is part of what makes the disabled such interesting people. We experience a harsh reality the able-bodied can only read about. We relish the adventure of disability even as we hate it. And from it all we learn to appreciate life as it is, without blinkers.

Back in the 1960s when I worked in the Senate, Hubert Humphrey was a force to behold. It was said that the effort that he and his office put into a average day's work would have been sufficient to govern a country the size of France. Humphrey had incredible energy; he was buoyant and confident. There was no problem that could not be solved and he was the one who would solve it.

Yet when I saw him in the last months of his life, he was a scared man. He knew he was dying of cancer and his eyes, once brimming with confidence, had a desperation he could not hide. Humphrey had caught a glimpse of his true helplessness in the face of approaching mortality. Clearly he could not handle this knowledge that we severely disabled people live with, day in, day out.

If we are able to live with our painful, fearful knowledge; live with it and transcend it; to have a full, productive and happy life in spite of it, then we have come to have a wisdom that is granted to very few. Oliver Wendell Holmes said once that the wisest of men is the old family doctor. He has seen all the pain and suffering life has to offer and he has seen the best and worst of mankind. The severly disabled person who makes peace with his disability is like the old family doctor.

So it is a rich, complex world for us disabled people. Our career out in the world, our private struggles, our adventures and our failures give us a "quality of life" that the able-bodied can only guess at.

And yet, strangest of all, it is the able-bodied who feel they have the right to make quality of life judgments about us.