Polio Place

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: I’m in the market for either a power chair or a scooter and am trying to make up my mind which would be better for me. I’ve heard there’s a stigma associated with using a power chair rather than a scooter. What’s that about?

A: Stigma? Really? I’ve used a power chair for over fifteen years, and I’ve never heard of this. It’s hard to imagine that something giving me the sense of joy and freedom my chair does could somehow brand me as unacceptable.

Is it possible others think ill of me not because I’m obnoxious or disagreeable, but simply because I use a power chair? I needed to check.

First stop: Talk with crackerjack experts. Goal: See if there is anything inherent in power chairs that could cause me shame or humiliation.

Their responses in a nutshell: Chairs are better for people with less mobility, for easier transferring, can turn on a dime, and can go places where scooters can’t.

On the other hand, scooters are fine for people who require less support, they weigh less than power chairs, usually take less effort to load, and cost considerably less than chairs.

Or not. Assessments differ. It’s smart to do the homework, test what’s in the showroom, and then ask for a trial run at home or at work before making a purchase. Lifestyle is a determinant. Needs differ. Comfort counts. To each his own.

Still, nothing in the equipment spells STIGMA. Could the problem lie in how the polio survivor in that chair is perceived?

Time for a small, informal poll. Thirty non-polio individuals were asked three questions to determine what using a power chair rather than a scooter says about the individual using the chair.

The results: About 43% believe those using power chairs are unable to walk much or are more disabled than those using scooters—who are considered to have trouble walking or to be less disabled (46%) and also to be elderly, overweight, or in one case, lazy. About 26% say those using power chairs are the same as those who use scooters. Others think people using power chairs are interested in keeping their independence or want to be active.

Forthright and thoughtful answers. Power chair users are not characterized in a derogatory way. No attempt is made to humiliate or condemn. If there is power chair stigma here, it’s not coming from these respondents.

Does this mean I’ll never see a shopper at the market stare as my power chair zips me down the aisle? Of course not. People are curious—a woman wearing an Eiffel Tower hat, a street brawl—anything different draws attention. And there’s a mean-spirited jerk in every crowd. But if I find stigma here, it’s only in MY mind. It’s merely what I THINK—it is not a FACT.

Accepting disability can be tough. Coming to terms with who we are often requires making formidable choices, dealing honestly with our very souls. In the end we must come out whole.

Why not help people understand? If they see enough of us tooling around in our power chairs, we’ll no longer be a curiosity. No need for our defensiveness.

What we can’t do is perpetuate this “stigma” myth. It’s said that if you tell people something long enough, they’ll believe it. Do we really want to play into the hands of discrimination like this? What do we expect of others, if we ourselves keep repeating such specious nonsense?

So to answer your question: There ain’t nothin’ to it.

Source: Post-Polio Health International (www.post-polio.org)