Wheelchairs and Stroke Survivors, aka Talk to Me When You’re Talking to Me

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China had the first-recorded wheelchair in the 6th century, made of plant reeds and iron wheels, and then Spain, Germany, and England later, ably transported, mostly through wars, the disabled by other wheelchair materials. Many centuries later in the 1700s, in Bath, England, the most popular wheelchair, albeit cumbersome, looked like this: 
 

Now we have this

 

Look how far we’ve come. But I’m here to talk about wheelchairs in a different capacity.

 

There are two Mark Zupan’s. There is Mark Zupan, the famous dean of the University of Rochester’s Simon School of Business, but I’m talking about the other Mark Zupan, who earned a soccer scholarship to Florida Atlantic University

 

Mark Zupan

A football and soccer star in high school, and after a soccer game in ’93, when he was 18 years young, Zupan got buzzed at a bar along with some of his soccer team and fell asleep in the back of his friend’s truck. His friend, driving drunk, went off the road and Zupan landed in the canal, clinging to a branch for almost 15 hours, resulting in hypothermia and, ultimately, to quadriplegia.  

 

Even though he stands and walks short distances, Zupan ended up in a wheelchair for life and became a quad rugby champion twice. Zupan went on to become a TV and movie personality, appearing many times as “the guy in the wheelchair.”  

 

Zupan’s autobiography, “GIMP: When Life Deals You a Crappy Hand, You Can Fold—or You Can Play” and his notable championships make him famous.

But to me, he is most famous for his words: “We’re normal people,” says Zupan. “Don’t be scared because we are in a chair. People don’t understand that. They think, ‘Oh, a wheelchair, something’s wrong with their heads, something’s just not right.’ Well yeah, we may be a little twisted, but no more than anyone else.” And there it is: “no more than anyone else.” 

Maybe it’s only me, feeling diminished by the wheelchair. I can stand and walk with a quad cane so sometimes, when I’m in the wheelchair, I raise the leg rests and stand so I’m on the same plain as everybody else. I’ll explain.
 

When I go to a doctor or a store and I have a lot of walking to do, I’ll go in the wheelchair, of course with a friend because I can’t drive (seizures in the first year, and this is my 6th, but still…). The doctor or the salesperson always addresses my friend, like, as Zupan says, they think “something’s wrong” with my head.

I was almost to the point, many times, of telling them “to look the fuck at me.” But I didn’t. Except one time. I was, to use on old expression, at my wit’s end.

Kristin C, working with the elderly, says in an email, when looking at somebody in a wheelchair: “I think we can only learn this from exposure to [the wheelchair]. If we all realize that it is the person in the wheelchair who counts, and not the wheelchair, and actually look at the person, we will get better at it from practicing it.”

But how many people do that? 10 percent? Less? Fuck. Not many at all.

Now I have a new line, much more genteel, to redirect attention back to me: “Talk to me when you’re talking to me.” You can use it for the doctor or salesperson. If asked, say you just thought of it. Don’t say you read it somewhere. Don’t give me credit. Just use it. And it works every time.


Joyce Hoffman

Joyce Hoffman

Joyce Hoffman is one of the world's top 10 stroke bloggers according to the Medical News Today. You can find the original post and other blogs Joyce wrote in Tales of a Stroke Survivor. (https://talesofastrokesurvivor.blog)
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Joyce Hoffman
9 years ago

Thank you, Michael, for your inspirational comment.

Unknown
9 years ago

these stories are further proof that most people judge whats wrong with a person in a wheelchair,perhaps to think of a reason that would put themselves in one, or the fact that most People judge, although we are taught not to,I was. of coarse I was brought up Christian & still am, my faith has increased daily leaning on GOD to help me through this. within months of getting out of the hospital I would ask my wife to let me go grocery shopping with her, just to get out of the living room. it was extra trouble for her ,but being a sweetheart she would help me from the recliner "transfer in the wheelchair push me out to the car,transfer into the car etc. them push me around the store piling up grocerys in my lap for me to hold onto with my only one working arm(right side stroke left side weakness "yeah right weak"people, mainly women would come up to us hug me & say awe,"thank You for your service,"was it afganistan, FALUSHIA, KABUL?…me, "Ive never been in the serviceI'm to old57, even my son is to old he's 39 !well thank you for your service anyway, perhaps cause I appear strong. thats why I (feel) I get funnie looks nowadays when I have the chance to use "the handicapped cart"with the basket on front "I can transport more grocery's,People I think see me as healthy, probably stronger with my good side than they are "IT WAS A BRAIN INJURY PEOPLE,i FORGOT HOW TO WALK"
I have fun with the wheelchair around people also, wheelchair up to an elevator & while waiting for it say"Man I hate elevators since the accident, don't want to get crippled again, you know these things can just fall especially from the top floors".I use canes now with a whole new set of problems, "My good arm & shoulder can barely take it some days. however most days I wake up & think "will today be the day"four years post brain anurysm& stroke during clipping that I will walk again ? I pray you-all keep up the good fight peace & Love from our father in heaven michaelJ.

Joyce Hoffman
9 years ago

John, thank you. I enjoyed writing it, too. 🙂

Joyce Hoffman
9 years ago

Rebecca, I know exactly what you mean! Thanks for the comment.

SSTattler
9 years ago

Very nice article! /John A.

Rebecca Dutton
9 years ago

Recreational therapy (RT) took me in a wheelchair to my first community outing while I was in rehab. The RT let me pay my bill. The cashier didn't know how to respond when I handed her my money so I stood up. The cashier was surprised but looked me in the eye and took my money. As an OT, I knew intellectually that looking at and talking to people in wheelchairs is important. As a stroke survivor who can walk with a cane, I try to find a place to sit down when I interact with someone in a wheelchair. The instant look of relief on the person's face makes me feel good.

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