I volunteer with disabled people and one girl I work with has Rett Syndrome. When I first worked with her, I assumed that since she could walk and grab things, she must be able to get out of the pool unassisted. After awhile in the pool while everyone was leaving and she was just unable to start climbing out, I eventually figured out I needed to lift her out.
Now that I’ve really gotten to know her, however, I can predict pretty well what she’ll be able to do when. She basically has a lot of ‘motor patterns’, some of which are easy for her to trigger and some I need to cue her on, and things that she doesn’t have a motor pattern for are very difficult. For example, she can’t drink from a water fountain because when she tries to bend over to drink, she puts her hand out like she’s trying to pick something up. That particular motor pattern also made croquet very difficult, as she’d hold the mallet in one hand and grab the ball in the other.
Personally, I think they really screwed the Ents up. In fact, I have trouble thinking of any characters they really got right in the Lord of the Rings movies. I suppose many of the hobbits turned out alright, as did Gollum.

So far, nothing quite like that has happened to me, but I can still sort of relate. I have a foot problem of my own in that my right foot doesn’t stretch very far (I can sort of point my toes, sort of stand tippytoe, but not as high on my right toes as on my left toes. So I tend to be more dependent on a good quality handrailing when going down steps because it’s hard to balance on the bad foot. And I also cannot run at all … I can walk sort of briskly if I’m not carrying too much and if I’m having a “good foot day” but cannot run. And I have not even tried to jump in 7 years because I’m afraid what it would do to my foot. And if I try to carry too much weight combined with too much walking all in the same day, that does some kind of re-damage to my foot that leaves me hobbling for weeks). So far, I haven’t needed to “prove” my foot problem. But sometimes I get conscious when I’m going across the street, “These drivers can see me walking — but do they understand that I simply cannot run if they get too close too fast?” Or if I’m rushing to catch the bus — some drivers will wait for you if they not only see you but also can see that you’re really racing to catch them. But I cannot visibly race! From the driver’s perspective, it probably just looks like an ordinary walking pace! (not that I ride buses much, but …)

Then there’s the opposite issue, where people underestimate what you can do. The most dramatic extreme, of course, would be all the people who look at this blog and then look at Amanda and go, “So, can you think?” (Uck. And, gee can YOU think?) But as a deaf person who happens to write speeches, I sometimes get the “supercrip” “wow” reaction … not much (I’m lucky in that I seem to mostly come across people who either accept my abilities on face value or at least are polite enough to pretend they do) but enough to bug me. And I’ve gotten the same kind of reaction pretty much all my life. My eight grade English teacher gave me an award that basically turned out to be an award for being inspirational as a deaf student who can write well. (Of course she came up with a nice euphamistic name for it and all, but when I asked what the name meant, that’s pretty much what she said.). And I know she meant very very well. It was supposed to be very complimentary. But my feeling at the time (and STILL is): if she just wanted to say, “What an Awesome writer you are!” then why not just give me an award that says “Awesome 8th grade English class writer” or whatever. Why bring the disability into it at all?

The rationale I suppose was that, well, most deaf people don’t write so well (the average deaf adult graduates from high school still reading at between about 3rd and 5th grade reading level). And she probably knew, if not the statistics, then the general trends (this was at a public junior high school with some other deaf students, enough that probably most teachers probably averaged about one to three deaf students each year or two. But if many other deaf people don’t write so well, then that isn’t proof that I’m remarkable. That’s just proof that the educational system is a collasal failure when it comes to educating most deaf students. (And of course, I’m not the only so-called “exception.” Just check out http://www.deafread.com sometimes and you’ll find about 200-plus deaf bloggers. And of course that doesn’t even count all the deaf people out there who haven’t really gotten into the blogging scene yet.)

I had a funny situation with a doctor once. I can not point my toes. I am literally physically incapable of pointing my toes. I was getting a check up at a college clinic. I hadn’t taken my crutches into the room (. I explained about the disability to the doctor, and she seemed to be following it, but I think seeing me stand and hop up on the exam table unassisted may have made more of an impression.

She did the usual exam stuff, checking my blood pressure and my lungs and everything. Then, she put her hands against the soles of my feet, and told me to press down. I told her I couldn’t. She told me to try. It took five minutes to explain that I simply could not do it, and it wasn’t a matter of trying. Then she had me get off the table, walk around the room, go fetch my crutches from reception, and tell her all the stuff I’d just told her.

It wasn’t so much variable abilities, as abilities people assumed went together, but it’s amazing how confused some people get when someone else’s abilities don’t fit their impression of what “someone like that” can do.

“Because we do, and because people have seen us demonstrate those rudiments (even if at cost to ourselves that they never saw), everyone’s ‘official’ story on us is that “she can really do it if she tries.” ”

This seems to be a common issue that cuts across disability (and maybe just humanity in general). I have a friend who in the past has had her (physical) disabilities fluctuate in severity sometimes from day to day. Even her own family couldn’t or wouldn’t understand that, for a time, it was natural for her to be able to do certain things one day and suddenly not be able to the next. So her solution was to pretend her disabilities were more severe than they really were, all the time, so that no one could accuse her of “not trying hard enough” at the times when she really couldn’t do certain things.

I also was reading the other day on the web about someone with chronic fatigue syndrome who has similar frustrations in which people just can’t seem to understand how she can have enough energy to do certain activities in the morning and then five minutes later suddenly reach her limit and have to lie down somewhere. Some non-disabled people just seem to have trouble wrestling with the idea of a body (or mind) that sometimes performs in unpredictable ways.

People with ADD confront it too. People can’t understand how a person with ADD can have no trouble focusing on, say, a computer game or some activity they find really stimulating and then run into trouble trying to stay focused on a task that may seem similar but just isn’t as stimulating to them. Maybe it’s an NT thing where most of us overgeneralize too much–partly from situation to situation, but also just from our own experiences and the experiences of people we think we know. (“My OWN body and mind functions pretty much the same from day to day, apart from minor variations caused by moderate fatigue or stress. Therefore EVERYONE ELSE must have bodies and minds that operate mostly the same all the time too. And most of my friends, relatives, classmates, co-workers, etc. seem to have the same experience, so that proves I’m right.”)

You’re right, most of the things you write can certainly be generalized to almost any disability: the power relations between clients and service systems for example is broad enough that it’s not even restricted to people with disabilities. Any person without independent funds of their own is in a very disempowered position when they have to try to apply for the support they need, and the system does inherently subject them to a lot of indignities.

We’ve had a lot of the former and not many of the latter, but a lot of our insights ended up according with those of people who claimed it had come to them in a “sudden flash of insight.”

Quite a lot of the people we’ve known who claimed to have had “sudden insights out of nowhere,” though, particularly about personal, emotional or spiritual matters, ended up retracting those insights down the road and saying they had “gotten carried away with an idea” at the time.

I’m certainly not saying that genuine sudden revelation doesn’t exist, or is bound to be unreliable, but… we haven’t rescinded on nearly as many of the ideas that came to us through involuntary rearrangement of things into patterns over years, as we have of what we thought, at the time, to be “flashes of understanding.” And when it comes to people attempting to teach you skills, our experience has been that they almost inevitably are looking for you to have a “sudden breakthrough” or “sudden understanding,” rather than for those ideas to sit in your head for a while and then begin to sort themselves out; and when the hoped-for “breakthrough moment” doesn’t happen, they assume you’re hopeless. (The whole concept of a “breakthrough” is a bit confusing to me, also, because what exactly is it that you are supposed to be breaking through?)

Sometimes I think it would just be, in some ways, easier if we did not have the rudiments of certain skills that we did (i.e. sometimes being able to work to deadlines, just incredibly randomly). Because we do, and because people have seen us demonstrate those rudiments (even if at cost to ourselves that they never saw), everyone’s ‘official’ story on us is that “she can really do it if she tries.” If we could never demonstrate them for others at all… well, I don’t know whether it would be worse for people to assume we didn’t have certain skills we did, on the basis of lacking others, or be breathing down our neck constantly telling us that when we don’t succeed it’s due to some moral failing because we “clearly” have “all the necessary skills.”

I noticed in retrospect, also, that we had a lot more “rigid thinking” when we were trying to hold the kinds of “mental widgets” that you mentioned a few posts back, when our cognition wasn’t naturally inclined in that direction.

…and then there are people who apparently try to turn the “rigid thinking” stereotype into a positive thing, or try to claim that certain types of rigid attitudes or misunderstandings from them are inevitable. “I’m an aspie, so I think in black and white. That’s what we do.” I really wish I couldn’t say that I’ve seen it said in just about those words, too, but I have. Of course, I think some people are conflating it with the idea that “rigid black-and-white thinking = logical” and insisted that therefore they must be “more logical” than most people. (I think even some published authors have pulled the “we think in black and white” line, too– I keep thinking that Temple Grandin did it at one point, although I’m disgusted with her for tons of other reasons.)