| POLIO TIPS AND TECHNIQUES
By Dr. Richard L. Bruno
Kids! What’s the matter with kids today? Judging from my patients’ reports, very little. Things have changed from the days, not so long ago, when some dirty, drippy 8-year-old would walk right up to your wheelchair and ask, “What’s they matter your legs?” Today, with barrier-free codes allowing adults with disabilities to be out and about, and disabled kids mainstreamed in schools, wheelchairs are no more exotic than iPODs.
Unfortunately, there still is a problem with the older generation. People with disabilities are seen to be public property, strangers often feeling an uncontrollable impulse to ask, “What happened to you?” This is the same morbid curiosity that makes people slow down on a highway to catch a glimpse of a body in a car wreck.
Recently, a patient using a wheelchair was shopping, when a 50-something, pot-bellied stranger appeared.
“What’s wrong with you?’ the man asked, without introduction.
“Nothing,” the patient replied.
“Why are you in the wheelchair?” the stranger persisted.
“That is so inappropriate and none of your business,” my patient concluded, turning away.
“I just wanted to help,” the stranger said, incongruously, and walked away.
The media can be even worse than the man on the street. TV reporters doing a story on PPS go for the tear ducts by asking our patients for pictures “before they were stricken with polio” to compare with new images of poor, decrepit “wheelchair-bound polio victims.”
Newspapers and magazines do the same thing, reporting individuals’ disabilities in tabloid fashion. A story about lack of access to medical care described a woman as a “victim of a crippling stroke, confined to a wheelchair,” when a simple “A woman who can’t get into her doctor’s office because there is no ADA-required wheelchair ramp” is what readers needed to know.
These types of interactions and depictions—even patients’ friends and family asking, “What’s wrong?” out of concern—are the main reasons polio survivors refuse necessary assistive devices. But, if survivors overuse their poliovirus-damaged neurons, they will continue to have PPS symptoms and lose more function.
And how did this business of “look at the poor cripples” begin? With March of Dimes posters showing children hobbled by polio, braced and looking pathetic, with captions like “I could be your child!” meaning, “Don’t let your child become a pitiful, useless cripple like me! Give money to find a vaccine.” Depicting disability in these ways diminishes those with disabilities, dividing “the crippled” from “the normal.”
So, regardless of who’s asking, curiosity about your disability does not trump your right to privacy. If someone asks, “What’s wrong?” or “What happened?” your response is totally up to you. You can ignore them and say nothing at all. You also have every right to say, “That is not an appropriate question to ask.”
For situations where you do want to respond, it’s helpful to have some ready-made answers. If a good friend asks about your new assistive devices, you can give an explanation about polio and PPS, and even give them The Post-Polio Letter at PostPolioInfo.com. If an acquaintance asks about new equipment you can respond with a brief, “I had polio and my legs are getting weaker.” If a well-meaning stranger asks and you feel like responding, there’s always the less revealing, “I have a bad knee/hip/ankle.” If you’re feeling frisky, you can even say “It’s an old war wound…football injury…skiing accident,” which can quickly end the inquisition.
Another concern of polio survivors is that people will think it strange if they use a wheelchair and can stand up. Granted, it is expected that wheelchair users should not be able to stand. But drivers get out of their cars when they arrive at their destinations. Why shouldn’t wheelchair users get out of their chairs? If you’re a walker who needs to roll long distances and someone stares or comments when they see you stand, you can always do what one polio survivor did: Look down at the wheelchair, look up to heaven and shout, “It’s a miracle!” get back in your chair and drive off.
It’s your body. You can do—and say—whatever you want.
Dr. Richard Bruno is Director of The Post-Polio Institute at Englewood (NJ) Hospital and Medical Center. E-mail PostPolioInfo@aol.com.
