It’s an amazing thing, the human body. It walks, talks, thinks, reacts emotionally. Through its sensory system, it interfaces with the entire universe.
Even we are amazed by our own bodies, like a baby playing with its toes, not certain that the toes are its own. Then the many discoveries after that—the legs running free. Could we be so free even if we flew?
Or hoisting something so heavy we never thought we could do it. Or how the eyes and hands coordinate.
Or the sensation of wind on a late summer night, the dew settling and enveloping us, drawn in until it saturates the body inside and out.
By age nine, we begin to notice other bodies and compare ourselves with peers. We might even test ours against theirs. “Race you to that streetlight pole—go!”
Then during puberty we find out what the sensory system is really for.
As we learn to know and trust our bodies, we come to think that we are our bodies, that it is the foremost part of us. Then the unthinkable happens—the body betrays.
It always does; it’s just a matter of when. Maybe it happens at conception when you lost the DNA lottery. If you’re born with genetic maladies, you might not ever know a time when your body functioned as advertised.
Perhaps your betrayal happened in childhood, the result of an accident or a disease. Or maybe your body handled the wear and tear until adulthood. That can have its own set of problems. You’ve come to know what to expect from your body; then one day it doesn’t work the way it always had. If your body made it all the way to old age before breaking down, then you are fortunate, but even then there are problems most didn’t anticipate.
How does disability impact our perception of our bodies? We experience a sense of loss. Something, some part of ourselves, is gone and it might never return. We might experience a mourning period and everything that goes with it—depression, isolation, grieving.
The loss can dash our hopes and dreams as we convince ourselves those are suddenly out of reach. Can we raise children if we can’t keep up with them? Can we run that marathon as we promised ourselves years ago?
Sometimes we feel a sense of guilt, as we look for someone to blame. Or we feel shame, as if there were some flaw within us, as if we slept in the morning they were passing out DNA. If we forget to feel shame, others might take pains to feel shame for us.
Sometimes we feel just plain weary from the struggle, every minute of every day of every week of every month of every year. How could a just God do this to us? Why??
There are a multitude of ways to deal. A person can pretend there’s no issue, that they are as normal as everyone. I tried that. It kind of worked. I couldn’t help feeling an extra dose of satisfaction when I kicked someone’s butt in tennis because I had one hand and they had two. But that still constructs a “me-and-then-everybody-else” barrier.
We can embrace the “special” aspect. If I persevere because I have a disability, then I must be especially brave. Well, yeah, some days I am. Other days? Leave me alone. I just want to be cranky.
We can play the blame game. This wouldn’t have happened if...they hadn’t built up my expectations; if I hadn’t had hopes and dreams to begin with; if the government had required safe farm equipment; if only I had been paying closer attention; if there were a just God.
My personal beliefs have evolved. I now believe that, before I was born, I chose this challenge for myself because it was the next step down my life path. Is that true? I don’t know, but it left no one to blame, not even myself.
What has really made a difference is time. It is the great equalizer. People who once felt sorry for me now feel empathy as they check their blood sugar twice a day or search for the best walker. They, like me, are doing the best they can with what they got. Whether they learn from that paradigm shift is up to them, just as it was for me.
Evan Sasman is a support specialist for people with developmental disabilities and certified peer specialist in Wisconsin. He deals with a disability, a hand amputation and resulting PTSD. He is currently writing a book about PTSD and building a website about trauma issues. He lives in rural Bayfield County, Wisconsin, near Ashland. He is an award-winning journalist and has worked for newspapers ranging in size from small weeklies to urban dailies. He was previously editor of the Bad River Tribe newspaper and has taught at-risk students for the tribal high school. He is a former instructor for Lac Courte Oreilles Community College. He is a member of the Wisconsin Writer's Association and the Lake Superior Writers.