Living With Polio
Changes of Heart
Nancy Baldwin Carter, BA, M Ed Psych, Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
“You just don’t get it,” she said.
My friend was accusing me of having “no idea what it’s like to be handicapped.” No milk of human kindness coursing through my veins, apparently. No empathy.
In a sense, she’s right. Never mind that I spent a year in hospitals, fighting my way out of total paralysis when I was a kid. Haven’t raised my right arm since. Haven’t had a neck that could hold up my head. Never mind. And post-polio paralysis increasingly riddling my body for the past four decades. Never mind.
When the high school principal at my first teaching job, unaware that he was being politically incorrect, told me I was the most normal cripple he’d ever seen, I knew he meant to compliment me. Odd, I thought, that he would think of me as a cripple. I saw me as a teacher. A good one, too. And a daughter, a sibling. And a friend. But I never thought of myself as a cripple—or even a person with disabilities.
Of course I know I have physical limitations. Nobody with a body as erratically functional as mine could miss the fact that often it’s not working well. So what? I always get the job done. One way or another.
The thing is, we don’t all think alike. Certainly not my friend and I. My disability seems normal to me; it’s simply the way I am—it’s me. Not non-disabled, but me. So my arm doesn’t work. How does that feel? Well, after sixty-two years of this, it feels normal. Does my disability seem normal to her? Probably not. Am I in denial merely because I don’t think of me as she does? Hardly.
So what is it like to be handicapped? Our answers are shaped by our personal experiences, our philosophies—to her it’s one thing, to me, another. Both valid. How I feel inside about disability does not necessarily have to reflect the condition of my body.
Years ago I had a doctor who berated me for suggesting that my pain and weakness could be polio-related. “Nonsense,” he said. “I had polio when I was in medical school and nothing like that is happening to me.” He wrote the name of a shrink on a prescription pad and said, “Here. This will help you.” Adios, doc.
Some time later, he ran into my husband at the library. He was retiring, he said, stepping down because he was undergoing symptoms of post-polio syndrome. He apologized. He had seen the light. A bit of revised thinking when it became his dysfunction. Was he learning what it’s like to be handicapped?
Obviously having had polio did not make this man a better “polio” doctor. But I cannot forget that the most amazingly knowledgeable and wonderfully understanding polio doctors in my life were not polio survivors. Did they know how it felt to be handicapped? Does it matter?
Here’s what matters to me: I want independence. I want to be the one to decide. I want to do what I can do. I want to accept me as I am and love the life I live. It’s an attitude. A state of mind.
Do I know what it’s like to be handicapped? Define handicapped.
All columns originally published by Post-Polio Health International (www.post-polio.org)