Special Accomodations and Proving Disability

It seems to me that a lot of disability accomodations go about it the wrong way. They have a certain thing everyone is supposed to do a certain way. When a disabled person says 'This is not fair. I can't do it that way' (or they can't do it as well as expected) then the system says 'OK, prove to us you are disabled, and we'll put you in a special category that get to do it a different way.'
There are several problems with this model:
a) it depends on labels and testing for disability. If you're undiagnosed or misdiagnosed, you won't get the help you need, even if you know that you need that kind of help. Even with an accurate diagnosis, you might not quite meet their criteria and still not get any help. (For example, some autistic assistive communication users have lost needed services because they now score over 70 on an IQ test.)
b) just because it's not as desperate for normal people as it is for you doesn't mean it wouldn't be helpful to them. Very often, disabled people can signal a problem that affects many people, simply because it affects them more. But if you single them out for help, the others with less acute needs for the same thing don't get it. For example, one study tested the use of voice recognition software to create 'subtitles' on an overhead as a professor spoke. This was intended for several deaf students as an adjuct to signed translation, but several hearing students also started looking at the display. Some people, like my mother, find it easier to understand text than speech, even though they aren't labeled with any disability.
c) it singles out the disabled person as a 'special case' rather than treating them as part of the group. Because there is no accomodation for differences except in extreme cases, other students may come to resent the disabled student for getting special bonuses (I remember how upset I got when the teachers let my CP classmate chew gum in class but wouldn't let me do it) or else pity them for needing those accomodations. Granted, there are many reasons for normal people to have negative views of disabled people, and changing this one thing won't eliminate that completely. But it will help.
What is the alternative? Make accomodations available for everyone, like they do with curb cuts, elevators and talking walk-lights ("the walk-light to cross college drive is now on. Bee-dup."). It won't really lower the quality of performance in a class if kids are allowed to type essays rather than writing them longhand (of course, they should all be getting practice writing longhand, too) or a professor passes out notes to their lecture to any student who wants them. In cases where there truly is a different need, such as teaching different subjects to a developmentally delayed kid than to their classmates, there are two options - either let people self-select which system to go with, or accomodate everyone regardless of labels (with this specific example, a system where children work on units and go to the next one as soon as they pass the earlier one would work well).
If we do it this way, undiagnosed disabled people will still get the help they need, disabled people won't be singled out as 'special needs', nondisabled people who'd benefit from certain accomodations (such as gifted kids) may be able to get them, and the time-consuming, wasteful and adversarial beaurocracy of determining who gets help will be eliminated. Even if we don't do this for every accomodation, we can do it for most of them and get similar benefits.

'Take It One Day At A Time'

I so often hear parents of disabled kids advised to 'take it one day at a time'. Don't worry about the future, only deal with today.
This is generally in response to parents despairing and panicking about their child's future. If you're too worried about their future to function or look after your child today, that's not a good thing. But as a long-term pattern, 'taking it one day at a time' is not good either.
If you take it one day at a time, you never get to prepare. Each new issue comes completely unexpectedly. When it's time for your child to go to school, you have no plan to help them fit in that setting. When they move from elementary to high school, or some transition like that, you haven't prepared them for it. When they graduate, you have no plan for after graduation. When you die, you leave behind no guidelines or safeguards for their needs.
If you are the parent of a disabled child, you can't just take it one day at a time. You need to think ahead. For example, one OT talked about starting to work on skills needed for driving with a 14 year old learning disabled teen, because in two years, he'd be wanting to get his license. You should do similar things. Don't panic, just think 'what can I do now to make this upcoming issue easier for my child?'
For example, you could check out potential schools for your 3-4 year old to go to Kindergarten in a few years. Talk to the teachers, watch the classes in progress, take your child for a visit if you're strongly considering it. And you can work with your child, to get them ready. Explain to them what school is about and what it'll be like for them (even if they have little verbal skills, they might understand it). Work with them on specific skills for school, especially things like not aggressing towards other kids, dealing with being away from you, etc. If they really aren't ready to learn what you're teaching, don't push it, but just showing them it may help them figure it out later. You might even want to enroll them in preschool or some other day program, especially if it has a reduced schedule compared with Kindergarten so it's less of an adjustment.
If you realize there are systemic barriers in place that will adversely affect your child, you can work on those before they actually get in your child's way. For example, if your child uses a wheelchair, and the school you're considering is not completely accessible, you can start lobbying and fundraising and such before your child even enters the school. I know one parent who started trying to get her child's school playground wheelchair accessible when the girl was in her early years in that school. A few years later, she was in grade 5, no longer into playing on playground equipment, and that playground was still not accessible. Had her mother started earlier, maybe she could've gotten to play in her school playground.
Taking it one day at a time helps dampen your worries, but you can't prepare for things. If you plan ahead, your road will be easier.

Is It Really 'Twice Exceptional'?

I've been looking through the Hoagies' Gifted page about gifted disabled kids. A common term, used by them as well as many others, to describe such people is 'twice exceptional'. Besides the non-specificity of this term (it applies equally well to multiply disabled people, such as deaf-autistic, blind-CP, etc) I have another problem with this term.
It assumes the person has two distinct differences. This is fairly accurate for gifted people with disabilities that aren't based on how you think and feel, such as blind gifted people or gifted people with solely physical disabilities. But is it really accurate to describe a gifted-LD, gifted-autistic, gifted-ADHD or any other gifted and developmentally disabled person as 'twice exceptional'?
On one online IQ test, I scored 158. In general, I tend to score in the 130s (the cutoff for giftedness is generally 130). I am also diagnosed with PDD NOS, a form of autism. So, therefore, I must be twice-exceptional, right?
Except that I've only got one brain, and there is not an 'autistic part' and a 'gifted part'. Except that I'm gifted in a characteristically autistic way. Except that my gifts are common among autistics, and my difficulties are common (in a less severe way) among gifted people. Except that I don't think giftedness and autism are really very separate at all. Except that my difficulties are caused by the exact same underlying traits that cause my gifts.
For an example of the last, and most important, point: I am extremely creative. I am also very disorganized. I've found that creativity is considered a common trait in gifted people, and disorganization is common in autistics (where it is generally subsumed under the broader category of executive dysfunction).
Here's the thing - both are caused by the same trait. I call myself a tangential thinker. This means that my thinking is like a mental web, with many interconnected ideas, and I easily wander off into various tangents. This causes creativity in that I find myself unexpectedly connecting ideas in ways most people wouldn't connect them - thinking of how things connect and putting them together in distinctive ways, and looking at things from unusual perspectives. This also causes disorganization because I don't stick with one thing the 'right' amount of time, instead sticking with some things too long and others too short, I wander from objective reality into ideas, I wander into the intricate details of a tangential topic and I do not naturally think in sequences. From my perspective, they're really the same thing. But the 'positive' results of tangential thinking are labeled creativity and subsumed under giftedness and the 'negative' results of tangential thinking are labeled disorganization and subsumed under neurodevelopmental disability.
Most gifted-developmentally disabled people are probably like this - in reality, many traits of both conditions are the exact same trait in a different circumstance. A common example is visual thinking. Many visual thinkers have trouble with language, especially with reading, while being gifted at math, mechanics, drawing or other visuo-spatial activities.
PS: I also think that for developmentally disabled kids, giftedness shouldn't be only having a full-scale IQ over 130. In the American Journal of Medical Genetics Part B, volume 134B, pages 104-109, they describe a girl with a full-scale IQ of 99 whose subtest scores ranged from 5-18 (normal is 7-13). I think kids like her are gifted disabled, too, despite having a nongifted IQ.