I know it's only a joke.
But still.
Usually, when we are in a mall, Joe will assist me on the long distances between the stores we intend on shopping in. Once inside the store, I take over driving duties. Because of my weight and because of Joe's knees, I never let him just push me - we've learned a way to work together so I am helping take some of the effort out of pushing. Occasionally, when we've been in a car for a very long time, I want to do some long distance pushing just to get the cobwebs out of my arms. This is what I was doing on Friday when we arrived here in Winnipeg.
Our hotel is near a really nice shopping mall, which is perfect for us, and we were enjoying being out and in at the same time. The cold was debilitating in the very short walk between parking and doors so we were making the very best of it. Joe had gone off to the restroom and I was tackling the distance. A woman, very friendly, was strolling in the mall, and she joked, 'Sometimes I wish I had one of those for when I get tired.' I smiled, she smiled, it was just an ordinary comment meant in a welcoming way.
I know that.
But still.
It's a joke I hear a lot, both in my power chair and in my self powered chair. People sometimes need something to say in order to say something. A little joke works to bridge that odd gap between strangers who want a moment's contact. AND I LIKE THAT KIND OF THING. But that joke is said often. So often that I begin to wonder if, behind the joke, is a kind of assumption that a wheelchair would be a wondrous thing for people who are feeling a bit lazy, or who just don't feel like walking. With economic tensions being what they are I do get the impression that people have the impression that those of us with disabilities are all unemployed and all a kind of shifty work dodging, benefit slurping, sub-class of society. Every time I hear people going on about cleaning up government, the discussion eventually slides off the powerful and the corrupt and centers on 'us' and the 'cost' of being a caring society.
I know that the woman in the mall was just making a little joke, making a little contact. I know.
But still.
While I hate and deplore those horrid trainings where someone sits down in a wheelchair to discover the barriers to free access. I wonder what happened to our ability to imagine. When I was growing up we went to visit a farrier and when I watched him work, swinging a heavy hammer to pound hot, glowing, metal, I was amazed by the poetry of his movements. There was an economy in the spareness of his effort. In fact, the rhythm with which he moved made it look effortless. But, even as a small boy, I knew it wasn't. I knew that his muscles were fully engaged, his mind was keenly focused, that the hammer was heavy. I knew that it took effort to make it look effortless. I knew that at the end of the day he was tired. When all of us kids were offered the opportunity to pick up the hammer, I said, without picking it up, 'I don't have to, I know it's heavy.' I remember now his smile, white teeth against a grimy, blackened face.
Now I know why he smiled.
When I was pushing myself in the mall, I was working. Hard. I'm really heavy. The chair itself isn't light. The bag on the back is full. I'm working. I'm doing with the smaller muscles of shoulders and arms what those who walk are doing with the much larger muscles of the legs. I have learned to push myself in the most economical manner and I have learned the exact way to push myself with the least amount of work. But it's still a lot of work. I guarantee you lazy people would be out of the chair in moments, they'd be frustrated at just how much work it takes to get from A to B.
Now I'm worried about having written that.
Yes it is work but it's my work. Just like walking is YOUR work. I don't envy you walking. I'd rather you not envy my rolling. It's just how we both, you and I, manage to get where we are going in the bodies that transport us. That's how it works. It's everyday to me. It's every day to you. My life isn't one of drudgery in a wheelchair and it isn't one of less quality either. It just is.
Back to the point.
Wheelchairs get people from one place to another. Power wheelchairs may look like fun, and indeed they can be. But they require constant concentration, constant watchfulness, constant adjusting and readjusting to the physical confines of the environment. They aren't for the faint of heart. They take effort, even though it may look effortless.
It's just a joke.
I know that.
But, I'm not lazy.
19 comments:
Thank you, Dave.
I get tired of the constant comments on the way I drive my power chair. I even get tired of the compliments - "You really know how to drive that thing!" Well, if you do something all day long, every day, for ten years or more - you become adept. I usually just smile and say, "Practice. Practice." But it grates, a bit.
And behind the comments about how they long to use a wheelchair themselves - perhaps I'm just hypersensitive, but I get a hint of, "If you really tried, you could walk." Just that tiny whiff of censure.
It has become fairly generally accepted that it is impolite to point out to overweight people that they are overweight. It is generally considered to be impolite for people to point out to someone that they do not belong to the local majority race.
When will it become unacceptable to point out to me, either directly or in a roundabout way, that I have a disability? I have already noticed it.
I find it really bizarre that many people would make that kind of comment, but it's obvious that they do.
As well as the reasons you've identified, I wonder if part of it is people wanting to say something to 'prove' that they don't see the wheelchair as a negative thing. So they say what they think is a 'positive' or accepting thing about the chair. Of course it fails, because a) a better way of being accepting isn't to mention it, and b) in trying to say something positive about the chair they actually say something negative about the person using the chair.
I could well be wrong, it just struck me that I might in the past have fallen into a similar trap.
AUUUUGH.
Once I spent two weeks in the hospital, absurdly ill. Somewhere around the halfway point the young woman who came 'round daily to do housekeeping said to me, "I'm so tired today, I wish I could just lie down and spend all day in bed like you."
That also reminds me of tales like this: http://www.lvrj.com/news/7723432.html
I used to have a link to an equally appalling one about people who can walk using motorized mobility devices around giant theme parks so that at night they still have the energy to go dancing.
Jerks don't understand what they have and how precious it is.
Well said, Dave.
I relate to what Defying Gravity said. I suspect I've fallen into that trap as well, simply in trying NOT be offensive. Here's the logic I would have used. By saying something like that, I would be 1) looking the person in the eye and talking directly to them (so not treating them like they're invisible or talking only to their companions); 2) acknowledging the wheelchair as positive and desirable; and 3) demonstrating that I'm comfortable acknowledging disability and not trying to pretend its not there.
While I get why it's offensive (and I'll try not to fall into this trap in the future), I have to wonder why wheelchairs are seen as so different from other accessibility options. EVERYONE benefits from elevators, large bathroom stalls, doors that open automatically, ramps, just as there are times when everyone would benefit from some sort of seated transportation option (wheelchair, scooter, golf cart, shuttle bus, subway). Is there a way of acknowledging that without being offensive?
Goodness, I'll bet that woman would be appalled to know that her simple attempt to make conversation moved you to write all of that. I get what you are saying. I really do. I wouldn't want anyone to make you feel lazy. I've seen you in action, there is nothing lazy about you. Not the way you teach or move. However, sometimes your posts make me hold back from talking and I'm not sure this is your desired result. I'm so busy worrying that I won't say something right or that I'll imply some sort of disrespect that I find myself missing opportunities to simply connect. I wonder if there is any value to worrying less about the words and thriving more on the time taken to simply share a moment. You shouldn't be made to feel like your chair is a luxury, but I bet you'd feel worse if you lost those moments with people. Each of the times that people say things like that, I'd just take stock in the fact that they saw something in you that made them want to interact. People walk by each other everyday, too often I think. I'd rather have someone take a moment to consider me than be passed by, even if their words weren't what I wanted to hear. Just a thought.
Anon, I understand and agree with your point. I know she was just making contact, I know that. I said in the post, and I mean it when I say it, I like acts of contact and civility. I wrote what I wrote because of the frequency of the remark and was wondering if the regularity meant something, as a combined whole, that it doesn't mean on an individual to individual basis. I think that we need to have spaces like this to talk these things through and see if there is a commonality of experience. I wouldn't want her to think that I thought anything negative about her at all, because I don't and didn't. Even so, there is something, to me at least, a bit disturbing in the view of wheelchairs being a lazy person's way around. Thanks for making me think even more deeply about it and giving me the opportunity to clarify.
I have Fibromyalgia and I am walking but in constant pain and sometimes I use a cane. When I lived in the US I could enjoy the relative comfort and luxury of a borrowed scooter with a basket to go around Target, here in Australia no such facility is offered. I have caught myself leaning heavily on a shopping cart and looking longingly at someones power chair. Quite likely my looks could be misinterpreted, as could any comment I might make... I think we all need to remember that we really don't know what is stimulating the other person to comment, we have not walked in their shoes just as they have not walked in ours. Great topic Dave!
I just think it's sad how many people try to do wheelchair humor, without the slightest idea how to actually be funny. I know how to talk about my disability, and make 'em laugh! But this tired line? Never was funny. I'll award three points for effort, but then take away two points because it is rather insensitive. Final score: one point.
Sounds like you have a keen knack for observation and the sensitivity to grasp beyond most - like your observation of the Farrier and knowing the hammer was heavy. Not everyone has that - and tolerance wanted should be practiced.
One way folks can get a wee taste is participating in "those horrid trainings", as you put it. No - it doesn't give the full flavor of the day to day struggle, but it may give a taste. Let them try opening a door, let them try transfering using only their arms, let them see how hard a long steady climb is - that is considered accessibility. No education is a waste.
Not everyone will be as sensitive as you, nor have your sense of humor. Hardships hone both - so I think you have to appreciate the efforts of others. Most people that take the time to acknowlege you do so from a good motive.
Sometimes we have to have the power and humility to give up the right to be right - for the edification of all.
Dave,
sometimes the observer is just tired and wishes to get around more easily and - yes - therfore envys you for your rolling chair.
For me it is that simple. And everytime I think like this, I am glad I am still able to walk around and if needed search for a place to sit down.
Thats just it....
Julia
Well, again there has been good discussion. I do feel that I've failed as a writer because I have tried to acknowledge that this post wasn't about one isolated incident of a woman making a little joke about wheelchairs. It's nice she reached out. I've tried to say that. Really. I think it was nice. What I was trying to write about was a pattern of that joke being made over and over again - when something happens a lot, there is something to be learned from it. I'm feeling that maybe people think I'm this big old judgemental guy who is over sensitive to everything said to me. I'm not. Really! As I said before something that doesn't mean anything on a one to one, individual by individual, basis - may mean something at a collective level. But I'm going to have to try to express that differently. Even so, I think the discussion here has been productive.
I think you succeed just fine in thiis piece. The reactions here are reactions ie pieces of thought broken off by your post, but not yet completely processed.
I've just spent about 15 minutes writing and deleting reactions to this Post. It's a complex situation a difficlt to capture the competing reations one has.
Your Post succeeds because it provides an opportunity to talk about all this.
Dave, I think you did fine. I think that sometimes people who are new to disability have so much trouble with the new concepts being thrown their way that they get stuck processing one piece of it and miss all the qualifyers surrounding it.
To the first "Anonymous" -- yes, I think most people with disabilities do get that people mean well when they say things like this. I think part of the problem is that although this kind of comment does meet criterias #1 and #2 that you list, it doesn't really meeet criteria #3 ... saying, "I wish I had your wheelchair" doesn't really acknowledge the disability of the person who is riding a wheelchair because they need to. It actually trivializes it by making it sound as if you see the wheelchair as just a convenience for the tired or lazy rather than an accommodation that they need in order to get around at all.
Also, any comment, even if not annoying the first time, can quickly become annoying the 50th or 500th time you hear it. The 500th person meant it just as nicely as the first person but it's still going to be received differently.
I think the concept you're reaching for works better if you put it in the broader context as you do here--recognizing that people with disabilities need certain things more, but also recognizing that sometimes people with disabilities are expressing a need that everyone has--it's just that their need is more absolute. When you say it as a one-off comment without taking time to put your reaction into context it can be easier to misinterpret because the listener then doesn't have a good way to distinguish your comment from the other 10 people before you who had a very different context in mind when they said the same thing. Hope this makes sense.
Andrea S. ,
thanks to you I now understand better what Dave was trying to say. Its like me Boeing asked about my blueish lips. People always ask weither I have eaten blueberries or if I feel cold. Its their Way of dealing with the question inside their head "Why are your lips so frightingly blue?"
Thank you for succeding in showing me what Dave wanted to say. And thank you Dave for bringing it up until I did!
Julia
I use to work in dentistry - and you would hear the same "jokes" or comments day after day after day. The folks making them are not thinking that I hear that all the time, they think they are funny. (Which they are, the first 100 times!! :0) Their attempts are usually to brighten my day or to help themselves with a uncomfortable situation. I have to put myself in their position. Just as I do for those nervious at the dentist - just because I am not scared or nervous - and even a little surprised that they are - doesn't change how they feel.
I find there is a "sensitivity" that is a gray area around diabilities - one being even the term of disability. So many want to be treated the same as everyone else - not disabled but able. Yet on the other hand want to be considered for access. Do we acknowledge our differences or ignore them?
I must say, Dave: your comments lately have been very interesting! SO MUCH BETTER than an endless chorus of 'yes, me too!' (yawn...)
I wonder if anything changes given Dave's comment on his Disability Blog Carnival post: "I watch service animals with wonder, and maybe a bit of envy." Is there a difference between your "bit of envy" of those who have service animals and other people's little bit of envy of those who have wheelchairs? Just something to think about.
Anon, I look at service dogs with envy because I could use one in my life. We've been hesitant to go through the process to get one because we travel so much and are worried about the implications of cross border travel, and dealing with hotels, with a service dog. I'm not envying them because they have a cute puppy or because I think they are too lazy to do things and get the dogs to do it for them. And even though service dogs do help I can't imagine saying to someone, 'boy I'd like to have a furry little slave to pick up my stuff!' But, even so, your point is well taken.
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