From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
Q: A friend who had polio told me that since he uses a cane, people give him more room so he has less fear of being bumped by others. He wishes he used it a few years earlier. Me, too! How can we help people “get over” the fear of looking disabled?
A: Fear can be so self-destructive, can’t it. Early support group organizers ran into the problem of people’s not wanting to appear disabled again and again. We’d call polio survivors to interest them in attending meetings and would get this frequent response: “You know, I think I’d be so out of place there—I don’t look disabled. People can’t actually see that I had polio.”
Then, being assured that there would be many others in that same situation, they’d show up at the meeting—with one leg two inches shorter than the other, or a withered hand, or obvious scoliosis. For whatever reason, they told themselves they didn’t look disabled. Was this fear? What did “looking disabled” mean to them?
Recently a woman who, at the least, wore a short brace on one leg from the beginning said, “I didn’t think I had a disability. Nobody told me I couldn’t do things. The issue was whether or not I could perform, not whether or not I wore a brace.”
So disability doesn’t have to be a stigma. Not everyone is concerned about what others think of their using a cart or walking with a limp.
Perhaps the fear of looking disabled has less to do with how we believe others perceive us than with how we see ourselves. Will “they” think I’m odd? stupid? helpless? worthless? These are our fears. Do they truly reflect society’s conception of who we are?
Since the advent of the ADA, many of us realize a newfound kinship with the rest of the world. Often we can get there now. And where physical obstructions still exist today, tomorrow they may not. Clearly others care more than before about making our surroundings serve us better. Some of them look with refreshing understanding upon disability. Can we say as much about the barriers in our own minds?
As for how we might help people “get over” the fear of looking disabled—maybe we should introduce them to this wonderfully auspicious line from polio survivor Dr. Arnold Beisser’s Flying Without Wings: “Acceptance with dignity is surrender without a sense of capitulation.”
That’s what our friend above finally did, isn’t it. He accepted his disability—found a way to allow himself to be OK with it. He discovered the good in using a cane, created a positive reason to go for it. That’s acceptance with dignity. This is an inside job. Nobody else can do it for us.
It’s a choice. Say I roll into the sexy nightie shop and the cashier pretends she doesn’t see me—reaches right over my chair to wait on the guy in line behind me. What do I do? Take it personally? Get angry, bemoan my disabled state, feel ashamed, wish I’d never thought of coming into this store?
Or do I say to myself, “Poor baby—she doesn’t have a clue,” move in closer, read the name tag she’s wearing, smile, and say in a cheery voice, “Hey, Gladys, let me help you reach these pajamas so you can ring them up more easily.” I know which response is going to make me feel better. And feeling better is in my best interest.
Truth is, we all do what we want to do. Me? I think Beisser is right. I choose acceptance.
Source: Post-Polio Health International (www.post-polio.org)
Tagged as: assistive devices , attitudes , canes , fatigue , feelings , weakness