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.

Communication Alternatives

Here's an interesting link.

Abuse is the Norm?

I recently came across a report on Violence Against Disabled Children prepared by UNICEF, and was shocked to hear them say that 90% of developmentally disabled people in one study had been sexually abused, and 80% of deaf people in another study.
I was not able to find the studies they got those rates from, but I found some other relevant studies. In the Journal of the American Academy for Child and Adolescent Psychiatry volume 333(4) pages 567-576, they studied developmentally disabled kids in a psychiatric hospital and found that 61% had been abused. In the Journal of Rehabilitation volume 68(1) pages 4-13, they studied disabled women (mostly physically disabled) and found that 67% had been physically abused and 53% sexually abused. In Augmentative and Alternative Communication volume 19(2) pages 125-134, 45% of AAC users reported having been the victim of a crime or abuse. In Sexuality and Disability volume 12(4) pages 297-306, they found that 27% of mildly developmentally delayed adults had been raped, as opposed to 4% of psychology students. They also found that most of the disabled study participants didn't know what incest and rape meant (the words were later defined before asking if they'd experienced it), didn't know what to do if they experienced unwanted touch or were sexually abused (the 'correct' answer was to 'respond assertively' or 'tell someone') and that 27% thought they couldn't say no to sex and 36% said someone else should decide for them whether they have sex or not.
With many of these studies, abuse survivors are actually the majority of disabled people. And in most cases, this is those who say they were abused when asked as part of the study. How many more who were unwilling to talk about it or didn't realize they'd been abused (for example, thinking what was done to them is normal)?
It's shocking. Think of this: it is more unusual for disabled people not to have been abused. I always assumed that having been sexually abused made me a minority, both in the general population and among autistic people. Though none of the above studies gave information on the rates of abuse among autistics, most likely the rates are fairly similar to other developmentally disabled people.
These studies suggest a much needed shift in perspective. You can't just assume they weren't abused until you find out they were. In fact, it may be safer to assume that they were abused, by someone, until you find out they were not.
I figured emotional abuse would be extremely high, near-universal, but these studies didn't look at emotional abuse. They looked at physical and sexual abuse and occasionally neglect. Even those more overt forms of abuse are extremely common among disabled people.

Counselors for Neuroatypical People

I'm autistic and also have PTSD (post traumatic stress disorder). The latter is something I've often received counseling for, but sometimes the fact that I'm autistic and most people aren't gets in the way.
There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.
I had a counselor like this. She was a hard of hearing woman with much experience counseling autistic people. She was firmly of the opinion that anyone who was different in any way should try their best to conform. (One of the first signs of this may have been when I innocently commented, upon her saying she was hard of hearing, that I'd noticed she had a slight hint of the 'deaf accent'. She seemed dismayed.) She kept nagging me about stimming and decided my biggest current problem was that I was homeschooled, and she must find me a special education placement. I spent my entire time with her arguing and treating her like an embodiment of one of my teachers.
It's been noted by many autistic people that autism 'experts' really don't have a clue about what it's like to be autistic. The worst thing is that they think they do. So if you try to tell them they're wrong, they often won't listen. They'll sometimes even try to tell you how you feel, as opposed to how you really feel. In my experience, also, they're prone to view autism as a problem, rather than accepting that I really am fine with being autistic.
The second type is much preferable. This is the type I usually have. Generally, they are people who specialize in trauma or more specifically sexual abuse, who, unlike autism experts, really do understand the people they specialize in treating (because the literature on trauma and recovery is much more informed by actual trauma survivors than the literature on autism), and though they know even less about what it's like to be autistic than most autism experts, they know they don't know. This means they are teachable, because they accept that I actually know more about what it's like to be autistic than they do.
However, with the second type, I spend far too much time trying to teach them, and every bit of advice they give is generally aimed at neurotypical trauma survivors, and therefore may not apply very well to me. The biggest problem is that I don't always know how to tell if it applies or not right away, and if it doesn't I can't necessarily explain why. I found it very difficult, for example, to explain why cognitive behavioral therapy does not apply at all to me (I tried to explain why in this post).
Oh, and by the way, here's a survey about emotional experiences:
Click Here to take survey

Learning ASL

I am learning ASL (american sign language). I've been carrying around my old, battered ASL dictionary and looking up random words in it, signing sentences with it. But I want to use multiple methods of learning. One thing I decided to do is look for YouTube videos in ASL that have subtitles, so I can watch them and try to recognize the words as they are signing. (I recently watched a video in Hindi with subtitles and ended up learning that 'ha' means yes, so hopefully I can do something similar with ASL.) Once I know more, I'll
I'm also trying to sign up for an ASL class.
So, here are some subtitled ASL videos:

http://subtitle.in/w/xZTbvvLWziM/E_U1fgUYfBf
A guy talking about having had shoulder surgery.

http://www.youtube.com/watch?v=sTzgFPiXz-8
A 2-year old girl demonstrating signs she learnt to help communicate with her autistic sister.

http://www.youtube.com/watch?v=Zvul3DC4l4E
A comedy video about a guy translating signs into speech.

http://www.youtube.com/watch?v=vj-U2w0sIfE
A guy signing a song.

http://www.youtube.com/watch?v=4h-wEBxekF0
Another guy signing a song.

http://www.youtube.com/watch?v=ivVr4ogQ5mI
A 6 year old girl singing along with a song.

http://www.youtube.com/watch?v=c2VW6ry5Ykg
A guy signing and speaking who has intermittent speech problems.

http://www.youtube.com/watch?v=pkq610qeOAY
An evangelical signing video, talking in excruciating detail about dying on the cross.

http://www.youtube.com/watch?v=2Ua4hqGHf2o
Some guy signing 'Hotel California'.

Here are some online ASL dictionaries that have videos of the signs:

http://www.masterstech-home.com/ASLDict.html

Opinion Shifts and Social Barriers

I read an article by the younger brother of a man, Chad, who has isodicentric chromosome 15. It's no longer available on the internet, but I have a printout. Towards the end he says that despite how wonderful Chad is and how much of that is because he's disabled, he'd never wish Chad's condition on another person.
This reminds me of my opinion on PKU. As I learnt more about untreated PKU, I realized just how valuable these people are. But still I didn't think people should feed PKU babies phenylalanine. I have since asked myself why, and now I am 'pro-choice' on the matter. I want people to be able to choose freely whether to give their PKU baby phenylalanine, instead of the automatic and societally enforced choice being 'no'.
While volunteering with autistic kids, I met a number of parents who seemed to instinctively view their child(ren) as fundamentally different and valuable in a unique way, while still saying that autistic kids should be cured and not thinking of it as destroying who their children were.
It seems to me that oftentimes, people who, through no choice of their own, ended up with a disabled family member reach some degree of acceptance (which is necessary for them to ever be happy again) but they stop at the point where fundamental assumptions would be challenged. They accept that their relative with an incurable disability is valuable and that the disability has benefits and isn't all bad, but don't challenge the idea that disabled people should be prevented.
The medical literature says that parents of disabled people have 'chronic sorrow', so that while they can reach some degree of acceptance of the disability, they are never able to completely move on because their child is a living reminder of their grief. Birthdays, seeing a normal child that reminds them of how their child might have been, all sorts of things open up the mourning again. It's like a wound that closes over but never heals.
However, I doubt the anti-cure parents of autistics, such as Kathleen Seidel, feel 'chronic sorrow' about their children being autistic. And I know for a fact that many Deaf people with Deaf children don't feel any grief at all about their children being deaf - in fact some mourn having a hearing child. It seems to me that 'chronic sorrow' only occurs if you have not completely accepted the disability, but simply found a way to live with something you still consider a bad thing. If you let go completely of your longing for a normal child, or never have that longing in the first place, you will not have chronic sorrow. Chronic sorrow occurs when you are living a situation that society's assumptions considers intolerable and you have found a way to cope while still accepting society's assumptions.
Ettina