Friday, August 31, 2007


The next Disability Blog Carnival theme is Resilience. I think I can write about that. Isn't resilience central to PTSD?
I don't think I'm a brave person, but my mother says I am, because I stand up for myself so strongly. But the thing is, I've usually been absolutely terrified as I do so.
I stood up to my teachers, refusing to submit when they tried to make me reorder my mind for their convenience. I fought the system any way I could. The thing is, I was terrified the whole time. It's just that giving in hurt worse than fighting back. That, and my hope that maybe I'll break down a barrier for the next person (or at least dent it somewhat). I don't know if my resistance is doing any good, but giving in sure won't.
I may have even stood up to my cousins when they sexually abused me. I suspect they pressured me into cooperating with the abuse - part of why I'm terrified of giving in.
Since I've left school, I've stood up for myself and others many times. I've advocated on the internet, even wading into the vicious yahoo group EOHarm to tell them they shouldn't be insulting autistics. (I was viciously flamed, but got several private e-mails from people who agreed or were at least more open to listening to me.) I've told advocates for the Judge Rotenberg Center how it really feels to be treated with that kind of force (although my experience pales by comparison to JRC). That's scary because I have to let myself feel pain in a situation which is most definately not safe. I've watched part of the hateful Autism Every Day video and wrote my criticism of it. (And felt bombarded by hate and had a terrible emotional flashback as a result.) I've told parents that their attitudes are harmful to their children, scared of being flamed but feeling such painful compassion for their children that I had to.
I've also 'stood up for myself' in harmful ways. I've yelled at my family and hurt myself. I even hit myself on the head with a glass bottle recently. I can't give in without rejecting myself, I can't accept that they aren't my enemy, I'm trapped. I've wished I could die or just disappear. I've felt that people would've been better off if I'd never been born. I've despaired of ever living a good life, achieving anything of worth or making a positive change for disabled people. I don't feel very resilient or brave.
I've fought the world alone because I don't recognize my allies or don't see them helping. I've wondered if I'm the only one who sees this (whatever 'this' is) as a problem. I've wondered if I'm stupid or overreacting to think it's a problem. I've wondered if everyone else is just nasty and mean or if there are any good people in the world. I don't feel very resilient or brave, but to keep fighting like this, I guess I must be.
And I've held on to hope. I've kept trying to recognize and find allies. I've kept hoping I can change the world for the better. I've kept trying to help the kids like me, who I feel such painful empathy for. I've kept trying to heal from my wounds even though I don't really believe I can heal. I've survived, although I don't know how brave that is because I can't bring myself to cause serious harm to myself even if I try.
[Edit: I thought of a good way to sum it up: I'm blazing my own trail because the standard ones are blocked.]

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Disability Blog Carnival

[Rewritten because I lost my internet connection - I'm on a poor-quality wireless connection right now.]
I missed the disability blog carnival again. Last time I wrote something late for it. I don't know if I'll do it again, because of the old familiar shame and fear of seeming stupid linked to many of my autism-related problems. It's hard to even mention this because my usual strategy is to ignore or dismiss mistakes. Saying openly that I feel bad about making a mistake is hard, unless I 'flick the switch' for an attack of self-hate.
I put a thing on the bottom of my blog which may help me remember in the future (of course, I might forget about it. Maybe I'll move it somewhere more visible).

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Thursday, August 30, 2007

Comments about comments on Kevin Leitch's blog

I can't seem to post my reply to Kevin Leitch's entry If Someone's Not Broke, Don't Fix Them, so I'm replying here to some people's comments on his entry.

"I doubt that he’ll be so attached to his glasses or define himself by them, but I suppose he might so I would definitely have to discuss this with him and make sure it was something that he wanted." (regarding laser eye surgery for her son)

My glasses aren't a part of who I am, but my myopia is sort of. A small part, but still. I used to want eye surgery, but realized the only reason I didn't like being myopic was teasing, which isn't a good reason in my opinion. And I can't remember ever not having eyes like this. If I regularly wore glasses, maybe they'd feel like a part of me, but I don't.

"After hearing some of the reactions to the NPR piece, I wish they had put Amanda first. People seem to be focused on Michael Carley, the married guy with two kids and a mortgage, and saying, well, that’s fine for those high functioning aspies, it has nothing to do with me!"

Even if Amanda Baggs had been first in that piece, chances are people would say that. I've noticed many people will ignore or disbelieve anything contradicting their stereotypes (why anyone would want to do such an elaborate hoax as some accuse Amanda of doing, I'll never understand).

Wednesday, August 15, 2007

Angry Disabled People

I was reading about how angry women are stereotyped, and was thinking 'how are angry disabled people viewed?' And here's what I think the answer is.
There are two ways angry disabled people can be viewed. The first is as 'bitter' about their disability. Even if their anger is not because they are disabled, but because they are discriminated against, it's viewed as an emotional reaction to disability. There's a phrase I've heard - 'bitter crpple' - which sums this up, except it's not just physically disabled people who are treated this way. Any disabled person who is treated as having enough of a mind to perceive how they differ from others may be viewed this way.
Michelle Dawson, an autistic woman, wrote a letter to the Canadian minister of health regarding autistic people being banned from speaking at an autism workshop where both parents of autistics and professionals working with autism would be allowed to contribute. She eventually received a reply in which the current minister of health said the following:

"I would like to express my sympathy to you for your struggle with autism. I appreciate how this disorder would have a profound impact on you and your family."

So rather than recognizing her anger at injustice, he decides to try to appease it by offering condolences, as if she was angry about being autistic, rather than angry about not being heard.
Some developmentally disabled or mentally ill people are not treated this way. Rather, they are viewed as if they are too incapable to notice that they are different or react to discrimination, and instead their anger is automatically attributed to their disability - for example, they are having an 'autistic meltdown'.
Even a neurotypical 2 year old can notice injustice, although they may not be able to explain or understand what is going on. If, whenever they expressed emotion, you immediately reinterpreted their emotion as something different and reacted as such, most toddlers would get angry. They would not be able to describe what you are doing, but they would be upset by it. Their anger would not be an inherent part of being a toddler or a reaction to how 'awful' it is to be so incapable. Instead, it would be a justified reaction to injustice.
Granted, toddlers, like anyone else, will get angry regardless. Frustration, tiredness, hunger - all those can make a toddler angry. But that doesn't mean they aren't capable of getting angry at injustice. People tend to overestimate what abilities are needed to recognize injustice. You need not be able to label it or understand words like 'discrimination'. All you need is to be able to feel unfairness.

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Friday, August 10, 2007

Why do Holidays Have to be the Same For Everyone?

The current disability blog carnival, #20, is themed On Holiday. This is my blog entry on this topic.
A sibling of a boy with lissencephaly, a brain anomaly causing very severe cognitive disability, cerebral palsy and seizures, said the following about his brother:

"Tomorrow is my brothers birthday. He will be 7-years-old. We bought a caramel cake, but he won't be able to eat it. He will have 7 blue candles on his cake, but he won't be able to blow them out or make a wish. He will have birthday presents wrapped up in wrapping paper, but he won't be able to unwrap them."

This is a common complaint by family members of developmentally disabled people, it seems. I've heard plenty of parents complaining that their child doesn't understand or enjoy a holiday or doesn't do it 'right'. This is viewed as a sad thing and a source of frustration. Very often they keep doing it the conventional way, hoping 'this time' their child wil react the 'right' way. In fact, higher functioning children may be expressely taught 'social skills' related to how to act on holidays, such as 'open all your presents and thank the gift-givers before playing with your new toys.'
But why should they do it that way? What are holidays for, anyway? Really, most of them are all for being with those you care about, getting a break from everyday stresses and having a good time. When the disabled child and/or their family is getting stressed out by the holiday, it defeats the purpose. If your child doesn't like standard birthday or Christmas presents, for example, don't buy them. Get something your kid likes, even if it is a string to twiddle with or a shiny ribbon to wave around. Why waste money getting something your kid probably won't want?
In general, if you go away from the idea of holidays and 'having to be' a certain way, you can find ways to fully include the disabled person. I was anxious about having an 18th birthday where the only guest was a 10 year old severely autistic kid because it 'didn't fit how birthdays are supposed to be' but I did it anyway. And I had great fun, even though my guest spent all his time watching fans and didn't eat any birthday cake. Even though I was focused more on his enjoyment than my own. I had fun doing interactive fan-stimming, playing tin whistle to him and chatting with his mother. If, instead, I'd tried to have a 'standard' 18th birthday, I'd have had to invite strangers or distant acquaintances, because I don't have any friends my own age. I'd have had my birthday invaded by NTs who'd expect me to fit in. I'd have ended up on the sidelines, watching everyone else have fun and waiting desperately for it all to be over. And that's a best-case scenario.
What about if I just didn't invite anyone, because I don't have any 'standard' friends? Well, I did that for several years, and I found that birthdays didn't feel very special - almost like just another day, except I got a nice treat and some new things. It was nice, but I wanted more. I wanted a memorable, special occasion for a birthday party. And I got one, but it was not a standard 18th birthday.
In general, this is just another application of a general thing - you should change how you do things to fully include your disabled child, rather than trying to force-fit them into the standard. The same principle applies to teaching, playing, discipline and numerous other things. Why must they do it the standard way? They aren't standard people, and that's just fine. Put them in the round hole, not one of the square ones.
[Edit: Unfortunately, I didn't notice that the Blog Carnival #20 is already over! Oops!]

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Thursday, August 09, 2007

Imagination Deficit?

I found an article recently: Creativity and Imagination in Autism and Asperger Syndrome by Jaime Craig and Simon Baron-Cohen, in the Journal of Autism and Developmental Disorders volume 29, number 4, pages 319-326 (1999).
In this study, they tested creativity by first asking children to add to drawings of two parallel vertical lines, then by asking them to add to more varied simple patterns, then suggest how to improve a toy elephant, and then imagine what an abstract 3D foam object could be. In each, the autistic children did more poorly than controls, and therefore were apparently 'less creative'.
However, I would probably have trouble giving original responses to those questions. And I've partially written several unique fiction stories, such as a tale of a land with humans, vampires and werewolves (which will actually be several books set in different parts of the land that each have their own unique culture), a story about a boy who finds out he has an addictive, progressive and very destructive kind of weather magic, a story about a changeling who is actually a girl merged with a spirit being (their kind always merges with humans in childhood), and a story about a land where people form magical bonds with animals and one girl is among the few who managed to bond a (highly magical) bat, except she actually bonded two bats, which is unheard of and turns out to be because she actually has the 'soul' of a dead person in her, and she meets a mind mage who is pretending to be a vampire due to weird psychological problems involving massive denial. So am I less creative than normal people? Clearly not.
I find it hard to be creative on demand, which is partly why those tests would be difficult. Most of those story ideas are idle thoughts I had at random times. Some are dreams, some are from books I read or stories I've heard, some are from pondering 'what if such-and-such'. Each of these ideas, by itself, is not enough for a real story, but gradually they fit themselves together in my mind until they are a story. The story, to a large part, invents itself. Once it has taken enough shape, I can start working with it, using logical reasoning and research and trying to figure out what 'feels right', but the process cannot be forced. I can't make up a story out of thin air. The story makes itself.
In addition, I have trouble mentally erasing things. If I'm looking at a blank page, trying to decide to draw something, I find it hard to mentally erase the white and cover it with color. The same problem would occur with the elephant and possibly the foam objects - I can't erase what they actually look like. But if I look away, with some effort I can dredge up something. And with the foam things, chances are if I needed a certain object for a pretend game some of the foam objects would start seeming like that thing I needed.
In general, I don't think autistics have a deficit in imagination. We're just different. Perhaps odd executive functions play a big part in poor performance on tests of imagination, because of difficulty mentally erasing or calling up ideas on command, which can certainly be present in an imaginative person.

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