By Mark E. Smith
A friend recently had me send him a replacement thumb screw to optimally secure a shroud piece on his power wheelchair. It was held on by a remaining screw on one side, but, absent the second screw, it sat crooked, ajar. “I just want to shut people up about it,” he said, noting the non-stop comments from his family and friends, constantly asking, Aren’t you ever going to fix that thing?
It really is amazing how bold people are toward commenting on our wheelchairs – and, when I say bold, what I really mean is unoriginal, idiotic, and even disability-phobic. After all, when was the last time a stranger made a creative, intelligent comment about your wheelchair? Chances are, rarely, if ever. …It’s always an unoriginal, idiotic comment like the greeter at Wal-Mart saying, Now, no burning rubber in here!; or your uncle, Harry, who says, We should soup that up with a gas engine!; or the nurse who asks, You’re not going to run me over with that, are you?; as you follow her down the hall at the doctor’s office.
My personal favorite – and, when I note favorite, I mean the most unoriginal, idiotic, never-ceasing comment of them all – is during every winter, when all I hear for six months is, Do you have snow chains for your wheelchair? And, undoubtedly, each person who asks me that wise-crack question thinks that he or she is the funniest, most original comedian out there – except that he or she really isn’t, merely stating the unoriginal and idiotic. Sixteen people made that comment to me on a single snowy day – I counted! – and I simply started replying, No, but I have duct tape… and I’m going to put it over the mouth of the next person who asks me that idiotic question! But, people kept asking, no less – there apparently isn’t enough duct tape to stifle the unoriginal and idiotic.
The other one that I love – to hate! – is when people ask me why I don’t clean my power wheelchair, when they know that it’s been raining or snowing for a week. I always want to reply, If you drive your car to work in the rain or snow, it gets dirty, just like when I drive my power wheelchair to work in the rain or snow, it gets dirty. What part of this equation don’t you comprehend, Einstein?
Most recently, I’ve inadvertently brought the unoriginal, idiotic comments toward my power wheelchair to whole new level, where they’re strikingly consistent, no matter the weather or occasion. I’ve had my “everyday” power wheelchair for about four years, and it’s gone through hell and back – driven thousands of miles, through countless thunderstorms and winter snow, caked in road salt for months at a time. And, so after such abuse, I understandably needed to replace my rear caster beam. In today’s limited funding climate, where many struggle to get basic mobility, it would have been unethical and immoral of me to simply order up a new caster beam for my wheelchair through my own company’s inventory system – there are too many people in need for me to be patching up my own wheelchair with new parts when such parts should go to others in need. Instead, I waited till our Service department had a used caster beam in reasonably good shape, and I had them recycle it onto my own wheelchair in need. The beam, as it turned out, was a different color than my frame; yet, that was of no concern to me – my goal was to have optimal mobility without impacting others with disabilities, so I was merely thrilled to have a good, used caster beam, regardless of color.
However, I didn’t consider the single, unoriginal, idiotic question that my mismatched-colored wheelchair would forever invite: How come your hood doesn’t match the fenders? As if I’m stuck in a never-ending episode of Seinfeld, every unoriginal, idiotic Neanderthal asks me that exact question, thinking that he or she is freakin’ hilarious: How come your hood doesn’t match the fenders? I suppose that I could take the time to explain the socially-responsible reason why my caster beam doesn’t match the rest of my wheelchair, but it would be like trying to explain the moral dilemmas of Dostoevsky’s Crime and Punishment to a three-year-old.
The larger issue is, however, why are people so quick to make unoriginal, unintelligent comments about our wheelchairs? After all, as those with disabilities, we don’t make unoriginal, idiotic, stereotypical comments to strangers about their appearances, nor do those who are able-bodied make such comments to each other. For example, a Wal-Mart greeter is allowed to say to a wheelchair user, Now, no burning rubber in the store!, but would be fired if he or she said to every overweight person, Now, no eating everything in the store! Both comments, at their core, are offensive; yet, culturally, one is allowed to call attention to a stranger’s wheelchair, but not allowed to make a wisecrack regarding, say, a stranger’s weight – what’s the basis for such a discrepancy of socially-acceptable behavior?
The answer resides in remaining disability phobia, where some people just don’t know how to act around those with disabilities, so they try making small talk centered around one’s wheelchair – and much of it ends up sounding really, really stupid, if not downright offensive to some.
I know a guy who works on the motor end of the power wheelchair industry, and based on my understanding of his background, prior to his entering the industry six years ago, he knew nothing of disability – and possibly still doesn’t. See, he knows me – and those around me – very well, but treats me very differently from others. When he sees everyone else, he greets them by name; however, whenever he encounters me, he simply says the same thing every time: Man, those motors are quiet!, referring only to my wheelchair. He’s said it to me hundreds of times, in every sort of setting. He could be talking to a group of people, and as I roll by, he’ll shout it at me – Man, those motors are quiet! It’s never, Hi, Mark, how are you?, just the same old, annoying comment: Man, those motors are quiet!
Why, though, does he insist on shouting that singular phrase at me year after year, rather than simply greeting me like everyone else? The first possibility is that he has a clinical fetish for wheelchair motors, and can’t control his “urges” when I roll by. Of course, a more likely possibility is that he lacks the capacity and comfort level to interact with those who have disabilities, and instinctively focuses on that which he’s comfortable with – motors. Therefore, saying, Hey, Mark, how are you?, to me, the guy with the disability, is so far outside of his comfort zone that the best that he can squeeze out is, Man, those motors are quiet!
Indeed, it’s a striving toward comfort level that ultimately motivates most of the unoriginal, idiotic comments that we receive toward our wheelchairs. People truly aren’t trying to be stupid and annoying, but actually gracious. Many without disability experience want to reach out to us as people, but aren’t sure how, so they stumble over themselves, using the obvious – our wheelchairs – as a conversational ice-breaker. And, that’s an effort on their parts that we should appreciate. Rather than avoiding those with disabilities as an unknown, others are taking the chance to start a dialogue with us – albeit, awkward, with unoriginal, idiotic comments – and it’s our role to then seize the opportunity, where we have a chance to engage with them in dialogue, where they then can see us as just people, after all.
The next time that someone makes an unoriginal, idiotic, comment about your wheelchair – Do you need a license to drive that thing? – try not to be annoyed or dismissive, but use it as an opportunity to open an immediate dialog, where the conversation quickly moves from your wheelchair to you as a complete person. You’ll likewise be amazed at how quickly you, too, will see the individual in front of you transform from an unoriginal moron to a sincere person, where everyone’s initial assumptions breakdown, and you just become people talking as people.
PowerchairDiaries 
Mark
I think you’re right. The motivation underlying these idiotic comments is generally benevolent–an attempt to be friendly, make contact, etc.–but the person is simply unable to relate to a disabled person as a whole human being. The one I get most often is “You drive that very well.” I used to answer it by saying “Thank you. And you walk very well,” but gave it up because it embarrassed the person too much. Now I just say, “I get a lot of practice.”
I’ll try your suggestion about using the occasion as an opportunity to open a dialog and see how it goes.
Bob
Big ditto on that rant, Mark.
Parents with large (“large”) families get something similar. The top two are, when out in public “You’ve got your hands full!”, and when announcing a pregnancy, “Do you know what causes that?”
I think it is the need to fill in the “don’t know what to say” space with something, anything, and the hope is that a “clever” comment will lighten the moment.
Ah well. As you say, the guilty are kind people trying to be friendly. Hardly the worst fault out there.
LOL I was beginning to get annoyed at your post; thinking “but,..” and then you turned the whole piece round to what I was trying to butt in with all along! Well said!
Before a stroke put me in a wheelchair, I thought I had some idea of what life in a ‘chair was like. I now know that I had no effing clue.
By the way, I tend to disagree with your thought that people say these unoriginal things because they cannotrelate to someone in a whellchair as a person. I think it is simply because most people are not very original. They just latch onto anything aboutanother person which “stands out” (height, weight, unusual clothes, etc) and come up with a lame comment about it as an attempt to start a conversation. I am tall and morbidly obese, so, before I was in the chair, heard countless things like “how’s the weather up there?” and “hey,big guy!” And who hasn’t heard “hot enough for you?” on a very hot day? they are just lame and unoriginal, nothing to do with relating to others as “whole humans” as I see it. But I’ve only been in a chair for about a year now. we’ll see my attitude about it in a few years…
Great post Mark! And funkyflower, I had the same response. At first thinking “But wait!!” haha And was happily rewarded with Marks introspection at the end, which I really identify with and have felt before.
In fact, connecting with people all over the world is one of my great joys. Using a wheelchair for almost 20 years now, I’ve enjoyed the way in which my wheelchair provides an up-front and easy way for people to start talking to me (and, gives me some leverage when approaching them).
It feels as if everyone ‘wants’ to connect with others, and so referring to the obvious is one way to begin a conversation. And who hasn’t heard the load of comments that may offend, or the endless questions that may seem down right obvious to someone who uses a chair.
However as you brilliantly pointed out, Mark, this is actually an incredible opportunity to just be yourself, and show the REAL aspects of our stories and things we’ve learned by our experiences.
And in that process, I feel that we all grow alongside whoever we’re ‘enlightening’. Because sharing is caring, and all you need is Love 🙂
Love the thoughts people, keep em coming!!
Just discovered your blog via Ben Matlin’s shout-out. Really enjoying it. My four-year-old son uses a powerchair and the comments are constant. Yes, the “do you have a license” thing, the “burning rubber” type comments, and most commonly just an astonished “wow, he really drives that thing well.” Okay, yes, he’s only four, so I can sort of see where that comes from, and I usually just smile we walk/roll on. But, I really want to say “yeah, your kid walks pretty well too.” I wish there were a way to get rid of the public-property attitude most (it seems) people have when they encounter my boy just doing his own thing, albeit on wheels. I thought maybe it was due to his young age, but now I see from your blog that it won’t end as he grows up. Thanks for the writings, I hope it’ll help me raise my son with the self-possession, confidence, and attitude to deal with all that crap.
I just got the best one 4 yr old kid “Hey mom, she’s in a wheelchair.” Mom, “Yeah, isn’t that cool.” Too shocked to say anything. Love the comment about duct tape, might use it sometime.
People are bold and some are bolder than others……I have had girls that will walk up and ask about my wheelchair, and all the body accoutrements that I sometimes have no choice but to wear…( leg brace , knee race, full upper torso solid body brace that is camouflaged ) The full upper body brace completely covers me from arm pits to groin area and is camouflaged which makes me look like I am a ninja turtle , in fact the wife calls me Donatello !!
I always explain and then ask them if they have ever gone out with a ninja turtle. As to some being really bold , I had a lady walk up and step up on the front of my wheelchair inside Wal-mart so she could reach something on an upper shelf…no excuse me or may I, was offered. I held my tongue but it wasn`t easy! I love to watch and study people as they are simply more fun than going to the zoo !
Mark! You covered a lot. I only get out in my electric-chair two or three days a week, usually to a restaurant, the magazine stand or the hardware store. About two years ago, I got a machineshop to cut two Batman bats from a 1/4″ thick plate steel, one for each of my rear wheels. Since everybody can relate to Batman, that has become my nickname at these places. Little kids are the bravest and I’ll hear one shout from across the store, “Batman, Batman, look daddy, Batman.” People look me straight in the eyes to emphasize their love for the Caped Crusader. It’s a bonus that I love all things Batman, and his Batmobile, the George Barris version from 1966 is the greatest car ever televised.
Reblogged this on wonkywarrior's Blog.