I am proud to be an advisor and occasional contributor to CAPTIVATING!, an inclusive online magazine. I wrote this for the May, 2017 issue and is used with permission. The format here is a bit different.
A newbie to life on wheels, he had his world under control that afternoon. In a narrow hallway, he was approaching the exit when a man emerged from the nethermost region behind his chair, grabbed the handles, lifted the chair up, and spun him around. “That’s better,” as he went out the door. Great. How do I open the door?
Never again did my wheelchairs have handles that anyone can grab. They fold down nicely out of harm’s way. That’s not all I’ve learned over decades of rolling.
Mobility Awareness
Let’s take a lighthearted look at personal boundaries, types of wheelchairs you encounter, wheelchair vs scooter, and how to bind someone to a wheelchair.
I cannot imagine that anyone reading CAPTIVATING! would ever do what the man did to me. So just sit back and smile as I share a few of my personal encounters in the Twilight Zone of wheeling.
- She approaches from the back. Did you know that a person using a wheelchair has absolutely no vision of what is behind them? She puts her hands over your eyes, and says, “Guess who.” I’m startled and my glasses are now smeared. It is the counterpart of asking a person who is blind, “Do you know who I am?” Have you ever said, “No, and I don’t care?”
- As he stands beside me, he rests his hand on the back of my chair. I am not a sofa. My wheelchair is a prosthetic body that substitutes for a back and legs that don’t work. And that ubiquitous little chair back is what is supporting my vertebrae and is keeping my balance.
- Three or four people are talking. They are standing up. “I’m way down here, y’all.” Can you please look down sometimes or sit down if possible? Thank you, kindly.
- We’ve all had this one. “And what would he like to drink?” Ask that, and my wife will reply, “How should I know? Why don’t you ask him?
Scooters, Wheelchairs, and Grandaddy Barndollar
Wheelchairs come is all shapes, sizes, and colors. There are push rims and electric motors, carbon fiber beauties and chrome clunkers, titanium and aluminum. I thought you’d like a brief look into Who’s Who.
- Meet Chrome Clunker, which is often heavy gauge aluminum painted black and might not actually be chrome anymore. This monster weighs in at 40-60 lbs. (19-27 kg). They are the darling of insurance companies and often make their appearance in medical type settings. My first chair weighed 65 lbs. Thumbs down on that.
- Full time users need the custom chairs. These are smaller. Much lighter! If you look closely you’ll notice the wheels are bicycle wheels and tires, and are cambered in about 4 degrees at the top. The very first one was made of bicycle parts. Every aspect of these beauties is custom, even the distance between the wheel rims and the frame. They are made of carbon fiber, titanium, or light weight aluminum alloy. I have titanium now, and my chair weighs 16 pounds. From 65 lbs to 16 lbs. Think of the difference this makes in my life. More importantly, in my wife’s life! It is less for her to lift and gives me energy that I can use to help around the house.
- Power chairs are just that. Electric motors. Heavy. They range from mail order to custom. The price can vary from a run down Fiat to a new BMW. And the pricey ones are not all that rare, I might add.
Scooters, or mobility scooters, depending on where you live, are the bane of wheelchair users. We often get lumped into the same category, but the difference is mind boggling. The keynote speaker at a Multiple Sclerosis seminar described the difference this way. “If you can walk, the scooter might be right for you. If you cannot walk, your life will be better with a wheelchair.”
How do you bind someone to a wheelchair?
My Grandaddy Barndollar, back in Polk Township, Indiana, says that the best way to make someone wheelchair bound is to use duct tape. He says rope is old fashioned.
We still read in the press about someone being “wheelchair bound.” “Confined to a wheelchair” is another of their favorites. When people hear and read this, the stereotype lives on. I was over at a local theme park a few days ago. I saw several others using wheelchairs, and not one had been tied up with duct tape. Nor rope. Nor string. We were eating pizza or indulging in a delicious cupcake exactly like everyone else. Maybe somewhere along the line, we broke free of the duct tape and are no longer bound or confined. Now, how do we convince the press?
Another bit of Grandaddy Barndollar’s wisdom is that the basic thing we need to know about life is that people are people. We are not our wheelchairs or canes or space age prosthetics, just nice people living life a bit differently. Enjoy your life to the fullest, however you choose to do it.
Mobility Awareness Month is observed in May and was started by the National Mobility Dealers Association (NMEDA) in 2001. I was pleased to see that the State of Florida has mentioned it on their website and now includes “wheelchairs, scooters, canes, and prosthetic devices.” Inclusion is growing.
As always, thank you for stopping by and spending your time with me. Time is often our most difficult thing to manage. Please know that your time here is noted and appreciated.
PD: Main picture is a collage of 3 photos. In the large photo on the left George is sitting on a bench in a park. He is wearing sunglasses and has his foot in the seat of his wheelchair. The 2nd photo shows George in a state-of-the-art power wheelchair. One leg is crossed over the other. He has blond hair and is wearing sunglasses, a striped shirt, jeans, and Converse shoes.
Yes I’ve always wondered why the term confined to a wheelchair 😂😂😂
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My guess is that it refers to the inability to walk and, therefore, use of a wheelchair? But confined? 😳 I don’t even sleep in the thing! lol
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I have Ben known to fall asleep in both of mine, but then due to MS I could sleep on a washing line at times
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That is me this summer. It’s been hot without the afternoon T-storms. I’m just lethargic. Today looks like a pretty good MS day!
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My mother had a variety of ailments with her legs and feet. She could walk, but not for great distances. I bought her a compact, secondhand wheel chair. The brand was ActiveLife. A racing stripe and AL were emblazoned on the side. Of course, we called it Al, and he/she became mum’s faithful companion. Super easy to get in and out of the car.
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Some personal touches help, like the stripes. You had the right idea, adapt and keep going! Liberating gadgets, they are!
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Excellent.
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Thank you. It seems that the things that apply to wheelchair riders are what apply to people who use white canes, crutches, whatever. We are all the same!
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So apt and eloquently said George! I have shared this on thinking out loud in the hopes of spreading more awareness. Thank you for writing such an impactful piece
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Thank you, Sassy. It is an honor to have something shared, and especially on your well respected site. I truly mean that.
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Interestimg to read about the language of being ‘bound’ to a wheelchair. There is so much inaccurate language used in reference to disabilities snd illnesses. I enjoyed the humour here!
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Thanks. I’d like to lighten the entire blog a bit.
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Ooo I’ll have to check out ‘Captivating!’ now, that’s a new one to me.
Honestly, I didn’t know whether to laugh or shake my head in despair at some of these things that people have done and said! Grandaddy Barndollar was spot on with how people are not their wheelchairs or prosthetics or illnesses, just people, living a little differently.
You’ve covered the wheels nicely, too. Does the BMW power chair come with a heated seat? 😉 xx
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Thank you! Ah, that would be a no on the heated or cooled seat. It does tilt for good pressure relief.
Captivating is online at http://www.captivatingmagazine.com. My articles are in December and May.
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Just been taking a gander, some really poignant pieces on there! What do you do in terms of being an advisor for Captivating? Sorry if I’m being nosy, you don’t have to answer I’m just interested.
And a shame about the lack of tushy warmer on the higher end models, which I expect can be incredibly pricey. Maybe there need to be retractable spikes on the handles and across the back to save unwanted people wheeling you around or using it as an arm rest? I think I’m becoming more evil and cynical as I get older 😂
xx
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You’re funny, Caz, though not totally off the wall. I saw a cartoon that had spikes on the chair! It seems like a good idea. CAPTIVATING! is the creation of Stephanae McCoy and Chelsea Nguyen. They have a group of people with varying disabilities with whom they discuss future topics, how to treat a given topic, etc. We also help find interesting people who would like to be featured. It’s fun, and part of the reason I’m so far behind!
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Wow, I can’t even imagine people doing some of the things you mentioned. It makes you wonder if they were raised by wolves….😁 I was absolutely amazed when I read that your chair only weighs 16 pounds. That definitely sounds much better than 40 – 60 pounds. I would think it makes it much easier to get out and do the things you love to do. Thanks for a very educational post!
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Thank you for reading. People tend to think all wheelchairs are the same, and few have ever used a custom chair. It’s a world of difference. I won’t bore you with a long account, but the concept and first custom, ultra-light came in 1989. Fairly new on a relative scale. And they indeed do those things! 😎
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Good grief! Thanks for the awareness though.
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George, what a beautiful write!! I cannot believe, however, some of the things people have actually done to you. Are they NUTS? My knee jerk reflex when I see someone in a wheelchair is to make room for them, to step out of the way for them, or even as much to ask if they need assistance, IF I am guided to. I would never want to insult someone. I think you are doing a grand thing in life writing to educate others what it is like to be in a wheelchair. Wheelchair bound? Really? I laughed out loud about the duct tape and rope!! Congrats on the writing job!!! Way to go! 👏🏼👏🏼👏🏼
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Thank you, Amy. Making room for the wheelchair is sometimes a good self-defense move. We frequently get asked if we need assistance, and things are getting much better. Usually we (or I if out alone) need any help. I’m reminded of a bridge in Amsterdam ❤️ where 3 men saw that I had misjudged its steepness and was in trouble. As they came running, they were asking if we needed help. I appreciate their kindness and their respect.
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Typo (late in the day, lol): Usually we are asked if we need any help.
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It’s so nice to know there are good people in this world. Makes my heart smile.
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Most people are nice, I think. And there are well meaning people who don’t think, too. Yes, keep smiling, all of us.
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Hi George, how interesting to realize that many of the uncomfortable social situations you encounter are the same as what Kai faces as a blind person. When checking him in a Duke the rep kept asking “does he…” “can he…” I kept referring to Kai. When she didn’t get the hints, I said, “Please ask him directly.” Kai also gets the “guess who?” and “how many fingers am I holding up?” Thank you for sharing your experiences and helping to raise awareness.
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Kai is old enough for the university people to know they can be addressed directly. Sometimes health care people forget that the patient in front of them in actually a person. Being a patient is only something people do occasionally. I’m sure Kai is very uncomfortable with the guessing games, too. Btw, I saw your photos today if him headed off to Colorado. Cool guy! He looked great!
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Thank you! He’s having a great time.
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