Tuesday, January 11, 2011

Don Your Thinking Caps

The week before New Year's I asked a series of questions of you and enjoyed very much reading the responses. I then decided that on situations that I had trouble understanding myself, life can be complicated and complex, I'd simply ask you folks your opinion. I like the interchange of ideas. I like learning from you all. So today begins the first Quiz of the New Year:

A Quiz About Walking:

I went to do a consultation north of the city. It was very snowy there and the disabled parking bays were cleaned out, but only sort of. Snow was packed up against the curb and the curb cut was completely covered by the remnants from a snow plow. I got out of the car and braced myself on Joe's shoulder and stepped up over the curb. The sidewalk was also snow covered. I told Joe to walk slowly as he pushed the chair and I would walk with him.

We were just at the door when a woman came out. She works somewhere inside, I knew that because I'd seen her going in and out over the years that I've been consulting there. We are 'nodding acquaintances' and I nodded on seeing her. She stopped, covered her mouth in shock and said, 'Good for you! Good. Good. Good for you!' She was sputtering with excitement. 'I knew you'd get out of that chair one day!' she continued on in a rush of breath. Then she was gone.

Once inside I sat down in the chair and was ready to head to the office. Somehow that interchanged bothered me. Firstly, I've always been able to walk a little bit. Secondly, why was my walking greeted with such excitement? Suddenly, somehow, my status changed in her eyes. Somehow she thought I'd achieved something remarkable by slowly teetering and tottering while holding on to Joe's shoulder for dear life ... somehow this ungainly bit of movement was superior to the easy glide of the wheelchair.

A Quiz in Two Parts:

1) Why was she so excited to see me walking?

2) Why did this bother me so much?


CL said...

1) People who don't have experience with wheelchairs tend to think that using a wheelchair is a sad, terrible fate. They use the phrase "wheelchair bound" and don't see anything wrong with it because in their minds, wheelchair uses are trapped in the chair, and it's deeply unfortunate. They don't see wheelchairs as a wonderful tool that allows users to get around more easily.

At the same time, we're constantly hearing "inspirational" stories of people "overcoming" disability. These stories have been "inspiring" humans for centuries. From the blind man who can see after meeting Jesus to Artie on Glee, whose dreams of walking were (sort of) realized on the Christmas episode.

2) I'm not comfortable speculating about your feelings. But it bothers me because it's a messed up view of disability and wheelchairs. Instead of being happy for you that you have a mobility device that helps you, she apparently pities wheelchair users and thinks it's a sad fate. And she thinks slow, painful steps without the chair are some kind of miracle, because of course all wheelchair users spend their days dreaming of walking, even if those magical moments of taking real steps are brief and painful.

Zoe said...

I'm guessing that she views being non-disabled (or less disabled) as inherently superior to being disabled. That's the implication of what she said to you -- being happy for you that you were moving in what she considered a less disabled way. I'm also guessing it's this assumption of hers, which devalues the way you live your life, that bothered you so much. It would bother me too.

Natasha said...

I think CL perfectly articulated why the woman could have been so happy; especially the part about inspirational stories and I don't really have anything to add to that. I'm also a bit reluctant to speculate on your feelings, but since you asked... ;)

I wonder if you could be troubled that her comment implies that she's been thinking about you every time she nods your way - likely with some element of pity towards your situation - rather than just accepting you as you are. This may now sit weird with you for 2 reasons: (1) It's the whole judging a book by it's cover thing, and no one is ever really comfortable when they learn that others have judged them based on appearances alone. (2) You likely haven't had any similar thoughts towards her; you've just accepted her as she is. Which means the "relationship" is different from how you previously understood it, which may not sit right with you.

Did that make sense, or am I just rambling now?

theknapper said...

Was just thinking of the movie HEIDI starring Shirley Temple where Clara finally walks because of Heidi's encouragement.
Somehow there's a message that it's not ok to be unable to walk and if you REALLY tried you could sumount any "adversity" and be normal and make everyone happy.

From my vantage point there was no acknowledgement that the so called disability spot was not cleared properly and you were put in jepardy just getting into the building.It annoys me that people think accessibilty is a parking spot or a large bathroom but if there's snow all around or the door is too heavy to open, it defeats the intent.

bookselves said...

One reason I would think that would be especially bothersome is because you were being inconvenienced/endangered by the fact that the snow had not being cleared properly.

In a way, you were being dis-abled by the fact that your use of a chair was only being partially accommodated. Rather than being independently able to use your chair, you were put in a situation where you and Joe had to walk in together.

But, this woman sees you walking and interprets this as if it makes you *less* disabled (and therefore better off, in her eyes). She was projecting a supercrip narrative on you at the very same time that you needed *more* accommodation than was available, not less.

Defying Gravity said...

Her reaction is a bit bizarre. But just to slightly play devil's advocate, maybe in her mind your walking meant that your physical impairment had disappeared or reduced? (Even though from your description it sounds as though it was clear it hadn't.) I guess it's not hard then to imagine that someone might think that was a good thing, without necessarily believing that wheelchair use is a tragic thing per se - especially if their own experience of physical restrictions have been temporary illnesses that do get better.

Having said that, the other commenters' interpretations are probably more likely, especially since she seemed to think you'd done something personally virtuous by standing up. Odd.

Betty said...

Well, I think CL and the other comments have it. I don't have anything new to add, I just wanted to say that I am sorry this kind of thing still happens.

Anonymous said...

The wheeliecrone says -
It appears to me that many people equate ability to walk with the worth of a person, as if one can only be fully human in a fully vertical position.
I suspect that you have noticed that your human worth does not diminish when you sit down - and the suggestion that the seated person is less of a worthwhile person than a standing person offends you. I know that it offends me.

Andrea S. said...

I think "Defying Gravity" probably comes close by suggesting that perhaps this woman did not even realize you could walk a little until now. Many people seem to have a bizarre tendency to see that supposed dread word, "disability", in pure black and white tones: either you're completely incapacitated or you're not disabled at all. And fail to realize that not every person they see in a wheelchair might actually have some limited walking ability that they can use if no other option remains. And fail to realize the high cost that might come with walking for some "part time walkers."

But in addition to that -- yes, I'd like to crib all the other responses that people have made in this thread, please. I find it telling that she claimed to have always known you'd walk eventually--it sounds like this was on her mind every time she saw you. Perhaps this is why her response bothered you...because she painted her mental picture of your life in colors of tragedy instead of with colors of a beautifully ordinary mingle of joys and frustrations and pleasures and disappointments and brightness that happen to be appreciated from a seated position.

Anonymous said...

Just a quick non judgmental question. Would you prefer to be able to walk or roll if each method was able to be used with equal ease? Does it matter either way? I think perhaps she wasn't judgemental of your status but instead would be someone who would prefer walking if able and was happy to see what she may have perceived as strides in acheiving non need to the chair for mobility.

Anonymous said...

Just a quick non judgmental question. Would you prefer to be able to walk or roll if each method was able to be used with equal ease? Does it matter either way? I think perhaps she wasn't judgemental of your status but instead would be someone who would prefer walking if able and was happy to see what she may have perceived as strides in acheiving non need to the chair for mobility.

Tamara said...

I think everyone is putting too many thoughts into this woman's head. From what I've read throughout my life, many people have difficulties when they have something happens that causes them to lose their ability to walk. It generally takes time to realize that another form of mobility is a blessing and that one can live experience a "full life" - for lack of a better term - using a wheelchair. Isn't there typically a grieving process for many people?

So, if she has no information from someone with a more realistic perspective - someone like you - how can we expect her to understand how you would feel about her excitement that you are walking.

She is ignorant of disability as are many people. Think of Christopher Reed. His goal in life was to walk again. I read his book. It was all about not giving up on his ability to walk some day.

It's why disability awareness is so important. I remember the first time I read about those who were against the Jerry Lewis telethon. It was eye opening. And it made me realize that there were a lot of things I just didn't understand. And it made me realize I had to really consider what it meant to my son to have a disability - not what it meant to me.

As far as why you feel the way you do, I have no idea. You know that people have wrong understandings of disability in general. However, I know that for me, I hate pity. I don't want people pitying me or my son because he has Down syndrome. I'd much prefer that people see how capable he is instead of focusing on the "can't". We all have things we can't do. Most of us don't focus on what others can't do, but whatever. I can't change what's in someone's head unless I take the time to educate them. And I don't always feel like educating them.

Ruti said...

It reminds me of how doctors periodically insistently suggest that I should get eye surgery even though at my age it's very unlikely to improve my vision and likely to make it worse. To me it seems obvious that this is a bad idea, but to them it seems obvious that I should grasp at any chance of being or looking more normal, even if it actually makes me function worse.

I don't think that perspective could possibly make sense to someone who isn't equating normal with worthwhile.

ivanova said...

I was also thinking of "Heidi." There are so many examples in books and movies of people with disabilities "learning to walk again" and how that is supposed to be the best thing ever. She thought she was seeing that Heidi moment.

Also, a lot of people don't have much practical understanding of what disability actually is. If they see someone in a wheelchair, they think that always means that the person can't walk at all. They don't get the idea of short distances/long distances/most convenient way to get around, etc. A girl I knew who used a wheelchair had someone in her high school ask, "Do you sleep in the chair?" I guess he thought she was *trapped* in her chair.

Maybe the reason you were so bothered is that you were acquaintances with this woman and thought you had built up a bond over the years. Then you found out that she was fervently wishing all along that you would get up out of your chair. So it's like you didn't really have a bond since she misunderstood these basic things about you.

Amanda Forest Vivian said...

I bet it bothered you because she went by so fast you didn't get a chance to tell her why she was misguided. I hate when people say things that are really ridiculous but I either literally don't get a chance, or don't think fast enough, to respond.

Dave Hingsburger said...

Hi, all, terrific discussion. I have been thinking about this more and I think part of what got me is that we really are strangers and, for me, 'Awfully snowy today,' is what you say to strangers. Her immediate feeling that she could comment on something fairly personal about me I think I found intrusive. I wondered how she could have 'always thought I could walk again' when we'd never spoken, had any interaction beyond nodding hello. While she was 'always thinking' about me, I was 'never thinking' about her - which I think is way, way more appropriate.

In answer to another question, I perfectly happy rolling through life. I don't spend time wishing I could walk. Though I do have a friend who wants my electric wheelchair and keeps saying, 'man, we should all be able to get one of these bad boys'.

Schmulie said...

I think it bothered you so much because she 'assumed' that your being in a wheelchair is a choice or something to be overcome. She didn't realize that because of the weather you settled for perhaps a less safe and more painful way to enter the building. I would imagine if I were in your shoes a comment like 'oh good for you! What an annoying time of year it is to get around. I'm sure you'll be relieved when all this ice and snow is gone' may have been appreciated. She was wanting to encourage you I assume, but I can imagine how it would bother you.

Schmulie said...
This comment has been removed by the author.
lillytigre said...

I use a scooter to get around town. I do walk but distance is a huge problem for me because of my CP. I use my scooter I think the way most of you who can drive a car, use a car. I can go to work and on all my required errands by scooter. One of the stores I frequent here, is a dollar store. There is a woman who works there who sees me every few days and one day when a friend was nice enough to drive me I went in without the scooter. This woman went nuts with happiness about my "God given cure" She kept saying I must have prayed a lot to be worthy of such a thing. (The religious overtones come from the area in which I live)
But she just went on and on. So much so I was also compelled to blog about the exact thing you mentioned. I know that I just wanted to cry. Because I suddenly understood that at least for this woman I was so much more worthy of her time standing up. What is that about?? I'm equally proud and horrified of my response to her. One thing I can't seem to get over even as an adult is that some people will say and ask the first thing that comes to mind and insist upon it no matter what. I used to just let those things go. But as I've gotten older I have less patience for being labeled as "super crip" I hate the fact that I feel the need to educate the uniformed all the time Dave I know in my case I http://lillytigre.livejournal.com/41934.html My blog post about the same situation in case anyone wants to read my take on it.

Colleen said...

Dear Dave:

I am in a rush today but I had to answer:
1) Normalism - she thinks of you as broken and now you are "fixed" or at least on your way to being fixed and more like the "normal" people which is what normalists assume you are longing for every moment of every day
2) you are not broken, you are not longing for "normal" every moment of every day, in fact you seem pretty okay with this way of being in the world (but she doesn't even begin to get that!)

Great discussion!

Jane Meyerding said...

1. She sees walking as "normal" and other forms of mobility as "abnormal," with the former being prized, the latter politely deplored.

2. You are not her "case" or her "patient," nor do you yourself believe that wheeling (instead of walking) is a tragedy to be overcome.

Moose said...

Reading that made my blood boil.

I am fat and while I don't (yet, normally) use a chair I am mobility impaired. And I'm constantly being told that my mobility impairment is solely because of my weight. Sometimes doctors do it before they've even seen my records or examined me. It's frustrating and infuriating when they do it, but it's so very common for the average person to do it, too.

So all these people are convinced that I can be "MAGICALLY HEALED" by the healing power of weight loss. And clearly there's some MAGICAL HEALING that can happen to you, too. At least in this person's mind. You can be SAVED from the Horrors Of The WHEELCHAIR!


Related: http://nopitycity.com/shirts/i-can-stand-up-its-a-miracle-version-2

Sandi said...

1) She was so excited because she believes (2)

2) She consciously or unconsciously believes that walking is superior or more worthy than wheeling.

3) In not negating the attitude it implied you agreed with the attitude.

4) Implied agreement to something you do NOT believe led to the unease.

Laurel said...

Huh. I had a slightly different take. To me it sounded as if she said what she did because she somehow thought your disability/wheelchair use was a matter of willpower and that if you just tried hard enough or did a certain thing (who knows what), you could "heal thyself". Disability is what you *are*, it's not a matter of willpower. Not to mention that her wording was very condescending and disempowering, as if you were a small child. Sort of pitying. And, if I were you, I would be seriously peeved that someone assumed any of these things, and condescended to me in that way--especially without knowing me well.

Kristine said...

I would be uncomfortable with that. Similar to how I was uncomfortable a few weeks ago, when I was commenting on how strange I find it that friends and acquaintances tell me all the time, "I had this crazy dream about you last night! You were walking!" I never have that dream, but apparently everyone else does. A work friend told me, "I guess it just shows that we all want what's best for you!"

I know she meant well, but it rubbed me the wrong way. People don't get that disability doesn't have to be viewed as a defect. It's just part of who I am. It's a culture that I belong to, and a major part of my identity. Just because we're a minority culture, doesn't mean that we're inferior. I don't assume that gay people wish they were straight. I don't assume black people wish they were white. It bothers me that people assume I wish away something that's so fundamental to my sense of self. And that they're wishing it away too, like they don't appreciate who I am.

(I know, I know, this lady was a stranger and not expected to "get it." I'm not sharing my logical response; I'm sharing my emotional response. And my wish that society will someday get the right message, so I can expect more from people!)

Lene Andersen said...

1. Because able-bodied people have no imagination. They assume that traveling they did for your life is the worst thing that can happen - after all, a many times I heard the ubiquitous "if I lost the use of my legs, I'd kill myself."
2. Because no matter how hard you fight to be seen/treated as an equal, we never will be in their eyes. There will always be pity getting in the way of a true, honest interaction, we will always be less than.

Rachel said...

Some years ago I was waiting for a college class to start with some friends when an older man I had never seen came over and told me he was a doctor, and was so happy to see me there. I told him thanks to get him to leave, and then had the fun of explaining to my friends why I was so upset once he left.

Why SHOULDN'T I have been there? My brain works fine, even if it's closer to the ground than yours!
Also, what on Earth does being a doctor have to do with knowing what my life is like? Obviously he knew nothing about me or he'd never had said something so stupid. He must have felt he was some sort of an expert because of his medical training. This makes no sense to me whatsoever!

But he meant to be kind. It still bugs me when I think about it! I admit I wouldn't mind being just a few inches taller, it'd make some things much more convienient, but it's not like I think about it. It'd be pointless and silly and psychologically damaging in the long run. As would desperately wishing I could walk if I suddenly couldn't. Oh, the adjustment period would be...interesting...but they do amazing things with chairs these days. I'd figure it all out. And so would they, but they don't realize it.

I can imagine the difficulties of using a wheelchair in a snowy climate! Oy. It must make for an interesting challenge on some days. It's challenge enough being afoot, let my sore tailbone from a slip on the ice a couple of weeks ago tell you...

Anonymous said...

I am a newcomer to your blog, and I should preface this by saying that I am open to learning about an aspect of society that I have never had to think about. I must admit that although I would never have actually said anything to you out loud like that woman did, I probably would have had a similar thought. I certainly don't see someone with a disability as being "unworthy" as some here have suggested. I just think that the world we live in and the society we have created caters to the "average" person - we can call this "normal," "typical," whatever, but it refers to the characteristics you would find if you randomly picked out any member of the population. If I knew someone whom I had never seen out of a wheelchair gingerly walk around one day, I wouldn't think any more or less of them. But I would hope that they were on their way to walking comfortably and without pain. And if they couldn't do that, then of course I would much rather they use the wheelchair than have to hobble around.

I'm not one of those "normal" people either, by the way. I have chronic pain due to a progressive illness. Pain is what I deal with, but it does not define me. I try to "overcome" my pain every day, and if I had a choice between having pain or not having pain, I would absolutely choose never to be in pain again. Is there a distinction to be made between my pain and your disability? (I ask this in all sincerity -- I truly want to know!) When people find out what I have had to deal with, they say they're inspired by me being able to achieve what I have in spite of it. I looked particularly bad today, in fact, and a friend said she wanted better for me. I didn't begrudge her that - I want better for myself! Better doesn't mean I'm making a value judgment in that I think I'd be worth more to society if I weren't in pain. It means that there are enough struggles in life as it is, and if I don't have to struggle with my body, that's one less obstacle I have to deal with. So I guess better means easier. And maybe that just means I'm weak. One day, I may very well end up in a wheelchair. Do I want to avoid that? Yes. Would I choose never being able to get around over being in a wheelchair? Of course not. And if someone showed me a look of pity while I was in the wheelchair, I'd believe that the look was coming not from a place of superiority but compassion.

Like I said, you've opened my eyes to something very new to me, and I hope I haven't said anything to disparage or upset anyone - it certainly wasn't my intention. I really do just want to learn.

Anonymous said...

1) because you looked more "normal" to her (she forgot that normal is actually only a useful term as a dryer setting)
2) because you respond to people trying to make you appear to be "normal" (see above)
Sorry - that's my best shot!
Susan Goharriz

Dave Hingsburger said...

Once again thank you all for the discussion and the time you took to comment. I've enjoyed reading the responses and learned things from them ... about you ... about me ... about us!

Anonymous said...

1) Why was she so excited to see me walking?

Because she, like so many others, believes that walking is superior to rolling.
Because she believes such diversity is something to be overcome, ironed out, rather than celebrated, enjoyed and accommodated.

2) Why did this bother me so much?

It bothers me bcos it's insulting. From an accommodate diversity perspective, a socially appropriate comment might be: oh dear that snow clearing ain't so good....

Laurel said...

1. Beats hell out of me--unless it vindicates her belief that all you have to do is try hard enough, or soothes her fear that she'll be in a chair one day too.

2. Because it demonizes our method of mobility, and relegates us instantly to the second-class territory of people who need to be fixed. Or, if I wasn't being analytical, because it's damned insulting.

Hmm. I must be cranky tonight.

Melissa M said...

My daughter has Down syndrome, and my aunt is a Christian scientist (no meds, no Drs, just prayer to heal). After Claire was born she sent me an email about how someone she knew was healed from cancer. The prayer wasn't the issue for me, but rather the implication that Claire needed to be healed. For me, you need to be healed when there is something wrong, and there is NOTHING wrong with my daughter. A slightly different situation than yours, but that's what came to mind.

Susan said...

Becuase she watched the movie "Heidi" when she was a kid, starring Shirley Temple...

kiwiaussie said...

I was thinking about exactly what Melissa M said. When my daughter was born with Down Syndrome, a 'friend' told us we needed to pray for the faith that she would be healed. My (then) 16 year old daughter turned to him and said "why? We like her just the way she is!"
Also, I have a friend who has been using a wheelchair since he broke his back 18 years ago. Every time he goes to a new church, they come to pray for his healing. Really peeves him off, because maybe he just wants them to pray that their baby will sleep better, or something equally 'normal'! BTW, he and his wife have 9 children. All born AFTER the accident. So obviously something works!! I am always amused by people's shock when they find out that!
One thing that really annoyed me was when I had to drive him and his oldest son to the hospital a couple of years ago after the son had injured himself. The nurse we were speaking to kept talking to me. I repeatedly pointed out I was just the chauffer and that she should talk to his father, but she just kept right on asking me all the questions. Pure ignorance.