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January 17, 2007

Disability and Difference

A foundation for the accessibility movement has been the observation that disabilities are created by social barriers, and are not intrinsic to the condition. So, for instance, in a building where the elevator buttons have braille, visually impaired persons will not be disabled; in a building where the elevators don't have braille, they will be. In a building without elevators, persons in wheelchairs will be disabled; but in a building with elevators, they won't be. And so on.

The thrust of the argument is that disability is what happens when average folks design institutions, spaces and buildings only for people who are the same as themselves. As a thought-experiment, imagine what a building would look like if it were designed entirely by people who are in wheelchairs and who never consider the needs of persons who aren't. How high would the ceilings and counters be? How comfortable, how able, would you be or feel in navigating such a building?

There are grey areas, at least to my uneducated mind and mostly normal experience. So for instance, a deaf person will not be able to enjoy music the way I do; but whether or not this is a disability is questionable, and besides, I imagine they'd argue that they enjoy music in a way that's not accessible to me because my ears get in the way. A person who spends a lot of time in a wheelchair is not likely to be able to run a marathon; but then again, I can't run a marathon either.

But those grey areas disappear in Frances's case. She's not disabled, period; I'm more disabled than she is. Diabetes has a much greater impact on what I can and can't do in a fundamental way than shortness has on her. There are foods and drinks I don't consume because the impact on my blood sugar is undesirable or unpredictable, activities I don't undergo for the same reason. For three years I didn't work out because the thought of figuring out the impact of varying intensities of exercises on my blood sugars with a pump, when the impact would vary depending on the time of day and what I ate beforehand and how much energy I had, seemed too overwhelming. There are lots of ways in which diabetes affects what I can and can't do.

But Frances can do everything. Her eyes, ears, vocal chords, nerve endings and taste buds function within normal parameters. She can grasp, climb, run, dance, walk, spin, giggle, understand letters, learn abstract concepts, speak, listen to music, and so on. Everything that she currently can't do is a result of her environment, not her.

Yet, in the world, I am seen as normal and Frances is seen as different, sometimes disabled. And I can think of no better case to exemplify the arguments of the accessibility movement, that disability is created by the decisions of planners and architects and designers.

Yet people tend to see Frances as the problem because she's not scaled properly to the environment; this strikes me as similar to claiming that a person is too big for certain clothes rather than certain clothes being too small for that person. A built environment should fit people. People shouldn't force themselves to fit the built environment.

I am not particularly concerned by these obstacles. I'm irritated by them; but not concerned. There are millions of very small people in the world who drive and get married and have jobs and kids and cook their own dinners every day. Frances will find a way to make an out-sized environment work for her. I know that.

What concerns me is people, because people make judgments about who you are and what you can and can't do based on really stupid stuff like whether or not you can correctly wield a bread-knife designed for a hand twice as big as yours. No one decides that I might be stupid because of my diabetes--because they can't see my diabetes. But people do assume that people in wheelchairs or using canes might be slow; people with disabilities continue to be underemployed, underpaid and more likely to be living on social assistance than "regular" people with the same socioeconomic and educational backgrounds.

I can fix the environment, if I want to. I can remodel our entire house to take her size and growth rates into account. What I can't fix is people's heads. I can't climb into the brains of those who still believe that government was on the right track with eugenics programs, and that those who are visibly different have less right to procreate. I can't get behind the eyes of the idiots who say "What's wrong with her?" or "She'll be perfect one day" and fix them so that they can see that there's nothing wrong with her and she's already perfect. And, because it's people who design the built environment to be so inflexible and unaccommodating to anyone without five functioning senses, four functioning limbs and a standing height of four-foot-nine to six-foot-four, it's their heads I need to fix.

It drives me nuts.

Mothers of daughters will already be aware of how insidious sexist training is, how it seeps into young girls' brains even when their parents do everything in their power to ward it off. How even when you avoid advertising and refuse all Disney and Barbie presents and buy books with strong female characters, the concerns about princesses and pink and weight and being Nice creep through the chinks in the armour. So, while not being able to fix the heads of other people drives me nuts, what makes me frantic is knowing that this, too, will probably creep in through the cracks and take root in my beautiful girl's brain--that because her height is less, so is she. The other day we watched Shrek. I was horrified. It had been years and, oh my god, the short jokes. In the Shrek World, it's ok to be an ogre, a spell-cast princess, a talking donkey, a witch, a magic mirror, even a legless singing gingerbread man; but it's not ok to be short, especially not for a prince. And the idea that a short prince could be the romantic lead? Preposterous! And fodder for almost two hours of ridicule.

Obviously Farquad had more wrong with him than his stature; but it was his stature the other characters mocked in this movie that was supposed to subvert fairy-tales and support difference.

I peppered the film with observations: "Boy, Shrek and the donkey aren't being very nice, are they?" But is it getting through the armour anyway? And if it is, is there anything I can do about it?

Frances navigating the built environment is a concern; but only that. I suspect that Frances herself will show me the way, when the time comes. What worries me is the conclusions other people come to about Frances, her worth and her abilities, based on how she navigates the built environment; and what scares me is what conclusions Frances might come to about herself as she comes to understand the way some people will see her.

~~~~~

One last thing before I let this go--which was never meant to be a multi-post extravaganza, but it's been a while since I've gone into this, so maybe it was due.

I understand the reactions to the previous posts. I imagine many of you saw yourself in the shoes of the strangers and relatives, and wondered what you would say and how you would act, thinking that it doesn't seem all that unreasonable. I get that. But my job is not to imagine or protect their feelings and motivations. I am Frances's mother. My job is to soften the blows, not excuse them. If Frances doesn't see me sticking up for her, how will she ever believe she has the right to stick up for herself? If she sees me accepting hurtful words towards her because the speaker's intentions were good, how will that affect her views on my feelings for her, on where she falls on my priority list? That a stranger's or aunt's feelings are more important than hers? Is that how you would want your mother to act, if you were in her shoes?

Frances may graciously accept the task of educating other people and being understanding and forgiving, or she may not; this is not my decision to make. But I do not think it would be appropriate for me to teach her that it is her role in life to be an object lesson for a clueless human race. Her role in life is to follow her dreams, be a good person, contribute to the world positively, and believe in her right to happiness; my job as her mother is to teach her how to do that. I don't think that's compatible with excusing or silently accepting hurtful words made about her stature in her presence.

Please remember that my and your words here are all spoken in her presence. She will read these someday. You're entitled to your own reactions (and if I felt any of you crossed the line, I'd have deleted your comments); but I hope you understand that my job here is not understanding people with foot-in-mouth disease (though I do) or forgiving clueless relatives (still working on that). My job here is, as always, to be a good mother to Frances. When people are idiots in her presence, she doesn't need me to turn the other cheek and preach a homily to her about forgiveness and tolerance. She needs for me to fight to make the world a more accepting one.

I imagine that we will have many occasions for private conversations about forgiveness and patience and the necessity of educating people. But the moment of being hurt by someone else's words, no matter how well-intentioned, is not the time for those conversations. That includes the blog. Frances is part of the audience, and it is her reaction I ultimately care about.

Not that I pretend I will always know what her reaction will be--but that's another question.


Posted by Andrea at January 17, 2007 6:50 AM under Being Small

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Comments

I totally agree with you... a mother should stand up for her children!

Posted by: Bloor West Mama at January 17, 2007 8:26 AM

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I am not extremely short, but I am about 5'1'' and I've been short (10-20 percentile)my whole life. I've always gotten a lot of short jokes, etc., but I also always knew that there was nothing wrong with short and that short women are beautiful. This is in part because I had strong short role models--both my mother and stepmother are shorter than me. Finding great short/little women for frances to know growing up is one great way to not only block but counter the negative messages she'll get growing up.

sorry if that is assdvice.

Posted by: curiousgyrl at January 17, 2007 8:35 AM

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You've just described the Social Model of Disability very neatly indeed, there. Its counter-weight is the Medical Model, which equates disability with difference and as a negative thing to be corrected.

Impairment describes how I am. I have an impairment of the ability to walk and stand; it only becomes a disability when the physical environment, or society's attitudes, disadvantage me. People with diabetes have an impairment of the body's ability to regulate its blood sugar; it's not always disabling. Frances could be described as impaired because she is significantly smaller than average; it is a huge triumph of her environment - largely as created by you, her parents - that she does not experience disability. Long may it remain so.

Posted by: Becca at January 17, 2007 9:02 AM

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Frances and Andrea: I do hope that this continues to be a "multi-post extravaganza." Everytime this media is used for thought clarification and venting, I learn something new. I learn to see things from a different perspective. Hopefully, I internalize that knowledge and become a better person because if it.

I'd never thought of the "Social Model of Disability" as you described it. It makes very good sense.

You're BOTH perfect. Exactly as you are. I wouldn't change a thing. (To change one thing would bring about other changes and you wouldn't be you anymore!)

Posted by: Miche at January 17, 2007 9:16 AM

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I also forgot to mention that you are completely right about not teaching frances to patiently apologize for herself. She is perfect, and those who cant see it have something wrong with them.

Posted by: curiousgyl at January 17, 2007 9:29 AM

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Have you considered finding a mentor for Frances? My brother is quite short due to a disease that causes all sorts of skeletal problems (arthritis, bone spurs, etc.). He had a built in mentor in my Mom since they both have similar diseases (genetic). She could always help him react to jerks when he was little and I think that really helped him deal with it. If there is an organization for smaller people in Canada, maybe they could help you find someone who would be a good mentor for Frances as she gets older.
I was thinking the other day that if my brother had been female, he would actually have had an easier childhood. He is now around 5'1" so not nearly the height difference Frances or even my Mom (4'10") have. Being smaller seems a bit less of a social stigma for girls than it is for boys. He learned how to fight very early on. Just another observation on the oddities of social structure.

Posted by: Exiled to Canada at January 17, 2007 9:33 AM

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Andrea, these posts are wonderful and I hope you don't stop them (unless you're tired of them).

Mom's Daily Dose at ClubMom (where Moreena blogs these days) has a post today about a mom encountering children smaller than the average and not being sure what to say, other than knowing she shouldn't say "They're so tiny!" In this case, the mom of the children brought up their ages, so she wasn't sure if that was an invitation to discuss their differences. I posted to her, and thought of providing a link to one of your fabulous posts, but didn't do so in case you wouldn't like it.

Posted by: Genevieve at January 17, 2007 11:05 AM

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Very well said. Bravo! Sounds like you are doing a terrific job as Frances' mother, and she is doing a terrific job of being Frances. I'm sorry that it's sometimes hard work to educate and inform other people. Thanks for reminding me of the issues, to continue to be sensitive to children and adults with visible differences at our school and in the world at large.

Posted by: tripleblessings at January 17, 2007 11:17 AM

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CG & Exiled to Canada--we are members of a few Little People (LP) groups. We haven't made much use of them yet, though I know they put out a good package for parents to use when registering their kids at a new school that I imagine will be handy when we know where Frances is going in September. But definitely, one of the reasons we signed up is so that Frances can get to know and learn from people who actually understand.

Genevieve, thank you. And thanks for the notice--I popped over myself and left a comment.

Miche, shucks. I'm so not perfect.

Posted by: Andrea at January 17, 2007 11:47 AM

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Disability is a gnarly issue. First off, I agree so completely with your statement that your job is to soften the blows for Frances, not excuse them. As a fully disabled person, I can tell you (which I'm sure you already know) that coping styles vary. She will find her way through the maze, cope and adapt in ways that those of us without a similar condition can't even imagine.

I've managed to cope with my disability in my own way ~ and highly resent those who try to design a way *they* believe will work for me because of some demographic study ~ or some lecture in a Psychology 101 class. This is my path and I will design it according to my own needs.

May Frances have the ability to do the same with her path.

:)


Peace,


~Chani

Posted by: Chani at January 17, 2007 12:49 PM

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I had a roommate who is a little person. One day when we were doing the dishes she sighed and said she hoped to be able to afford to build a kitchen to her height when she was older. Up until then I'd only noticed how well she'd adapted to our shared built environment, and not how difficult that environment was for her compared to me or our other roommate. It lead to a very interesting conversation of what being small has meant to her. It certainly made me rethink some of my pre-conceived notions of what the 'normal' built world should be like...

Posted by: suze at January 17, 2007 1:29 PM

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You're such a great mom.

The blog's a start, isn't it? I'm way more aware of difference, and the way the world's set-up can create a problem where none was before, than I was before reading you.

Posted by: Jennifer at January 17, 2007 1:34 PM

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I'll say it again, she's lucky to have you.

Posted by: deb at January 17, 2007 6:49 PM

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Great observations, Andrea! It is a definite challenge growing up different from society's expectations of "perfection" or "normal." I definitely understand how tiring the education of others can be. I think the best thing you can do is demonstrate that assertive education/sticking up. Francis will develop ways of dealing with the expectations of others. Debriefing after experiences where people or situations need a healthy dose of learning to accomodate will help her develop a healthy view of how to respond to those situations.

I had a great teacher who always debriefed after orientation and mobility lessons. She asked a lot of good questions, and was able to point out aspects I never would have noticed. It was the little things like "that passageway where the police siren was going off was really confusing. I remember having to deal with that in training." I social work speak, she validated my experience. That will probably be the absolute best "vaccine" you can give Francis against the hurtful words of others, and the urge we can get to appologize for things that are not really our issues.

I hope this made sense, and I'd be happy to help or clarify any of this. Thank you for tackling this issue.

Posted by: Nickie at January 17, 2007 7:52 PM

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Andrea, thank you so much. What a great way of explaining the Social Model...putting it into terms that people can understand.

With greatest respect, I'd love your opinion on something I posted a few days ago, in terms of how to react when your child questions differences that they observe in other people. I am acutely aware of not wanting to use people as educational tools, while also trying to openly and honestly address and respond to the fact that kids will notice and comment. (The post is called Respect)

Posted by: NotSoSage at January 17, 2007 9:46 PM

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Your writing about this is fantastic Andrea. I stand in awe, once again.

Posted by: Marla at January 18, 2007 12:57 AM

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Thank you for visiting and for your insight. I knew that you would have some great advice. I agree with you: what I tried to touch on in my last sentence, but I didn't clearly didn't elaborate, was that I also feel uncomfortable with asking other people to become tools for learning about difference. That's part of why I needed people's advice.

It's a wild world we're navigating here with our kids, with so many challenges, and I'm so glad to have people to turn to for advice. And thanks for the referral to aboutface.org, I'm going to go check it out!

Posted by: Jill at January 18, 2007 10:52 AM

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I forgot to say in my post, Andrea, that I had just been thinking about Shrek recently, and how awful the height slams were and how you would feel about it. I do remember a number of the reviews mentioning it at the time, saying how they didn't fit the message of tolerance in the rest of the movie.

Posted by: Genevieve at January 18, 2007 10:52 AM

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Andrea,
I hate that you have to educate me on such matters but I am grateful that after all this time, you are still doing it with intelligence and grace.

As for Shrek, hunt down the origianl picture book by William Steig. It has very little to do with the movie and can act as an object lesson for how Hollywood cheapens things.

Posted by: Mad Hatter at January 18, 2007 11:12 AM

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Andrea, you always make me think of things I'd never considered before. I think you're awakening minds already through this medium. Frances is in good hands.

Like curiousgyrl, I am also a "short" 5'1. My mother is 4'10, my aunt 4'9. They were always lovely -- done up and strong. Forces to be reckoned with. It did help with my self image and I've always felt taller than I was. The size of your personality counts for a lot.

That being said, I am always annoyed at how my feet don't reach the ground on the streetcar, how my 6 foot husband keeps the extra paper towels above the kitchen cabinets, how I have to drop my son into his crib at night because I didn't think to buy a crib with a gate that lowers.

But whenever I want to complain about my lack of stature, I think of a 5 foot girlfriend who was in a terrible car accident and told that if she were any taller, she would have died. Sometimes being small happens to be in your favour. And besides, it's common knowledge that the best things come in small packages.

Posted by: nadine at January 19, 2007 7:21 AM

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Mad Hatter, I'll do that. The book's always better than the movie, isn't it?

Posted by: Andrea at January 19, 2007 10:16 AM

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You're so right about Shrek ... and I speak as someone who loves that movie. It just grated on me the whole way through that in a movie whose whole message seemed to be about not judging people by their outwards appearance, Lord Farquod was constantly put down, not for being an arrogant bastard, but for being short. It was such a jarring note in a story I otherwise liked.

Posted by: TrudyJ at January 19, 2007 2:31 PM

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Go Berserk




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