Saturday, October 27, 2007

Expectations and Hope

I'm at a conference about autism right now. Last night, a guest speaker about ABA gave his closing remarks, talking about raising expectations and hope for the future. Listening to him, I realized something. His whole idea of the kind of expectations you could have for an autistic child was fundamentally prejudiced.
There was no possibly of being autistic and living well in his view. The height of progress for an autistic, in his opinion, was when they came closest to the functioning of a neurotypical person. He viewed higher ability to function, as measured by speech, tested IQ, self-care, adult living placement - the usual - as synonymous with being less autistic. There was no place in his view for people like Amanda Baggs, who live well in their own home without testing high functioning on measures like speech and self-care. Or people like me, who are very much autistic but have no trouble speaking, minimal self-care problems, and a high tested IQ.
Contrast that with this quote from A Parents' Guide to Inclusive Education, published by the Saskatchewan Association for Community Living, which was being given out free at the conference.

"Myth #6: 'Your child is not ready to be included.'
Your child cannot 'get ready' to be in a regular classroom by being segregated from it. A child may never reach the 'level' of skill or behave the way that the administration deems as good enough. A child should not be discriminated against for not being the same as another child. Keep fighting for an inclusive placement. Your child has a right to be there."

Once, someone in the Schafer Autism Report said once (paraphrasing, because I can't find the exact quote - here's a reply to it) 'Suppose you were the person who, without treatment, was destined to spend your life banging your head on the walls of an institution, would you want someone speaking for you and counseling against treatment? No, I wouldn't either.' If I was in danger of being institutionalized and couldn't, for whatever reason, fight it myself, I wouldn't want ABA people fighting for me. They'd try to make me prove I'm 'capable enough' to get my rights.
Instead, I'd want the likes of SACL speaking for me. I'd want people who felt I deserved my rights no matter what my level of ability was, who felt that I could live a good life at any level of ability. I'd want people like Cath's mother in Does She Know She's There, who refused to institutionalize her severely disabled daughter when such behavior was standard. I'd want people like Amanda Baggs advocating for me. And (I'm lucky I can say this) I'd want my parents speaking for me, just as they did when my school wanted me to get Ritalin.

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Wednesday, October 24, 2007

If Autistic was Neurotypical

First, to clarify - neurotypical basically means 'the majority neurological type' or reasonably close to that. The neurological type that our society considers neurotypical will, for the sake of clarity here, be called 'allistic', which means 'other-oriented' or focused on other people. It's important to note that some allistic people are not neurotypical in our society (such as Down Syndrome people).
With that sorted out, my question is - how would allistic people be viewed by a society where the typical brain type is some form of autistic?
Firstly, chances are allism would be considered a spectrum, from severely allistic to only mildly (mildly allistic people might be what we'd call mildly autistic, actually). And the spectrum concept would understate the variability. Variation in things which in our society are just considered 'personality' or other stuff would be used as determinants of severity of allism.
Autistic people would function better. They may even be people who, if born in our society, would find it very difficult to speak and/or do basic self-care activities who in that society would have no difficulties. The few autistics who did have trouble functioning would for the most part have trouble for reasons that were not considered part of being autistic, even if in our society their difficulties would be considered due to autism.
In contrast, allistic people would have trouble functioning. In fact, some allistics who in our society would do just fine might have difficulty with skills considered just as basic as speech and self-care. Allistic people we'd consider to have a disability of some kind as well as being allistic would in that society be considered simply allistic, or perhaps described as having 'syndromal allism'. Some syndromes would have markedly different effects simply because of the different genetic background and environmental context. For example, people with Down Syndrome would be less often allistic than they are in our society - though some of the typical effects of DS would contribute to a higher rate of allism among them than the general population (for example, DS people are, on average, slightly more sociable).
Allistic people would be viewed as unhappy, partly because they are upset by things considered normal (and many things autistics are normally upset by would be accomodated and prevented to the point of being invisible) and partly because it must be 'so horrible' to be disabled. People would describe an allistic child's separation anxiety in ways that totally distort what's actually going on, or even if they figure out a fairly accurate explanation they'd view it as indicative of a deficit of some kind. There would be treatments designed to help with separation anxiety, completely ignoring the adverse effects on attachment. Attachment would likely also be impaired simply because the autistic parents don't understand their child and the basic reciprocal interaction between parent and child is more difficult as a result. Things due to the problems allistics have in an autistic society would be viewed as inherent to allism, though in our society they're only rarely, if at all, seen.
Some allistics might say that allism isn't really a bad thing, and would get accused of opposing chemotherapy and so forth. Some allistics would say that their kind of allism is fine and even valuable, but we don't want the severely allistic people. Allistics might try to imagine a society designed for people like them - how much like ours would it be?
This is my entry for the Disability Blog Carnival, which has the theme 'If...'

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Wednesday, October 17, 2007

Survey about School Trauma
I just wrote a survey to decide how common this stuff actually is. I'm planning to use the information from that survey for my book about School Trauma.
For those of you who haven't read my earlier posts about this, I was emotionally abused by my teachers. I think they honestly wanted to help me, but they kept trying to make me act normal and rearrange my thoughts and emotions to be more normal (which of course I couldn't do, not that I wanted to). From reading I have found this sort of thing is unfortunately very common, especially for neurological minorities, but no one seems to have written much about it. So I'm trying to fill a gap with my book.
By the way, I also have a yahoo group about school trauma. It's quite inactive, so I'd really like more people to join and start posting on it.

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Thursday, October 11, 2007

Online blog survey

I found an online blog survey, which I've decided to fill out.

1) Do you think the blogosphere can contribute towards highlighting the issues and concerns of the persons with disability and the terminally ill? If yes, how? Definately, by providing a medium for marginalized people, including disabled people, to express their views in a public way.
2) Can blogs be part of efforts to promote an Inclusive Society? I hope so. Hopefully, by reading my blog, people will be made to think about the unquestioned 'truths' about disability and related issues.
3) What inspired you to start your blog? Amanda Baggs' blog, I think. I can't really remember why I started it actually.
4) What are the challenges you are facing in promoting your blog? I don't think many people read my blog, or if they do, few comment. I'm not sure why - do I not blog often enough?
5) Do you consider the blog as one of your achievements? If yes, how? Not sure what that question means. My blog is being referenced as evidence of my abilities as a homeschooled student for the university.
6) Can blogs help raise resources? How can blogs be sustained over a period of time? Most blogs are free to maintain. Kassiane recently got money to pay for meds and such by people asking for it on blogs.
7) Is blog an effective medium through which you can connect to the persons with disability across the world? If yes, how? Somewhat. I connect more by yahoo groups, especially AutAdvo.


Wednesday, October 10, 2007

How Prison Affects Inmates

I heard a story on CBC recently about long waiting lists for treatment in prison resulting in prisoners having parole delayed or getting let out without any treatment for the problem that made them do the crime. Here's the link. Long waiting lists for treatment is a major issue in Canada and there's a lot of discussion about that, but that's not what my post is about. Here is what my post is about:

"And the longer someone spends in prison, the more difficult it becomes for them to reintegrate into society when released."

Trying not to extend their sentences unnecessarily is only a band-aid solution. We have to look at 'why do lengthy prison stays have this effect?'
The most common explanation I've heard is blaming the other prisoners. The psychological/teacherese term for it is 'association with deviant peers'. For example, a petty criminal gets in jail, and while in there, he befriends a guy who gives him advice to make him a better criminal, or he recruits him for a gang, or something. Or they both hook up when out of jail and get into more trouble together than either would have alone, because they spur each other on.
And that is an important thing to consider, but they're really missing something. Way back in 1971, a psychologist recruited a group of college students for a study. Randomly, he divided them into two groups. One group was informed that they were to be prison guards and told to come to begin work at a specified time. The other group were surprised to find the police come to their doors, looking to arrest them.
They spent only six days in the prison, instead of the planned two weeks. In that time, 5 prisoners, a substantial proportion of them, had serious breakdowns and had to be released, one the day after it started! The rest of them all were seriously disturbed. After only a short time, 6 days at the most, each were profoundly affected by the prison. How would it be if they were in there for 6 months or more? How would it be if the guards had 'self-selected', so those who were most uncomfortable being guards (who'd generally been the nicest ones) were less likely to actually be there?
Why is it that 36 years later, people still don't understand this dynamic? Is it that it's too inconvenient, that recognizing this forces us to ask painful questions about what to do about it? What do we do to deal with criminals? Or to help people who pose a danger to themselves? If we recognize that the system currently in place is unethical and counterproductive, we must think of what to replace it with. And that is a big question, one that no one has an easy answer for, so many people shy away from asking it. But we must ask it, because what we've got now is not working.
PS: The Lucifer Effect, by Philip Zimbardo, was used to help put together this post.


Wednesday, October 03, 2007

Mile Stones

Person 1: What's got him so upset?
Person 2: He's got a bad case of mile stones.
Person 1: Oh, yeah, I know how that hurts. You just feel so useless when your mile stones are acting up.
Voice Over: Mile stones can be good for you, but excess mile stones are harmful. They sap away the pride in your achievements and interfere with caring for yourself. A related condition is Shoulda Syndrome. Shoulda Syndrome is characterized by thinking 'shoulda done this' 'shoulda done that'. If you have Shoulda Syndrome, mile stones might be the underlying cause.

I heard of a disabled kid, about 6 or so, who had just recently been toilet trained and was going around excitedly telling strangers 'no more diapers'. I cringe to think of their reaction. Oh, most people probably were polite to her, but I doubt they thought of her the same way as a 2-3 year old saying the same thing.
In disability rights, I've often heard people saying that disabled people shouldn't be put on pedestals for doing things that are no big deal for disabled people. To a certain extent I agree, particularly if it wasn't really that hard for them either. But we can go to far the other way, and that's not good either.
I want the right to feel proud of my achievements, even if it's something like managing to touch the net when throwing a basketball instead of missing completely, o catching something thrown directly at me. Or successfully traveling alone by bus on an unfamiliar route. Just because those things are easy for most 18 year olds shouldn't mean I can't feel good about achieving those things, because they are an effort for me.
Just because one child takes his first steps when most other kids are running and jumping around doesn't detract from the effort it takes for that child, and it shouldn't detract from that child's sense of accomplishment. Too many delayed kids learn that no matter what they achieve in the areas they're delayed, it's always insignificant compared to others. This doesn't have a good effect on their self-esteem, nor does it encourage them to use the abilities they do have. In fact, it's a recipe for perfectionism - discounting what you did well while emphasizing mistakes.
Now, as many disability advocates have pointed out, praising people excessively for minor things isn't good either. In general, I think praise should be based on how much effort it actually took. It's not that hard for a paraplegic to sit and drink a beer, so it's not really praise-worthy, and praise for that is condescending. Similarly, many gifted children suffer from being praised for easy thngs too much - it may seem impressive for them to solve a math problem intended for a child 3 years older, but that doesn't mean it's a real achievement for them. Following the same rule, it is praise-worthy when someone does something that did take effort, like me catching a ball or getting safely to a new destination on the bus, or that one little girl using the toilet consistently enough to stop wearing diapers.
PS: My Dad thought up the funny conversation in the beginning. He was pretending milestones were something like kidney stones or gallstones.

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Tuesday, October 02, 2007

Disability Blindness

This is a post I've been planning to make for a long time, but only got around to it now.
I have a book called Lifting the White Veil, which is about racism and focuses on what it means to be white, and how whiteness is often 'invisible'.
One chapter discusses colorblindness, and the problems with that view. Now, most people don't seriously think you should ignore disability like colorblindness ignores race, but there's this idea that you should see the 'person first', pretend you don't notice the disability except in very circumscribed situations, and completely ignore some of the more important aspects of disability (particularly the interaction between disability and identity).
Here are some of the criticism of colorblindness made by that author, and my own comments about how they do, or don't, parallel the 'politically correct' view of disability.

Colorblindness denies that race makes a difference in people's lives.
This isn't that true of disability, but considering that he's not talking about different cultures but instead the effect of racism, an important parallel can be made. I've certainly seen a 'blindness' to disability discrimination. This article studies alexithymia and depression in autistics, and despite quoting one person who directly linked prejudice to her own depression, completely ignored the possibility that being treated as inferior and wrong and expected to act in ways totally different from who you really are might explain why autistics are so often depressed. The closest they came was to state that:

"Whereas the slow compensatory acquisition of an explicit theory-of-mind has made the awareness of inner states possible, at least to some extent, it has also led to an increased awareness of the failure to “fit in.” This indicates a cost of compensatory learning that has not
always been realized. Increased depression could therefore be seen as a secondary reaction to a theory-of-mind deficit, dependent on specific experiences in the recent past."

which isn't very close at all. In general, any kind of problem a disabled person has must be a) a part of their disability or b) a natural psychological reaction to awareness of their disability, not c) internal or external discrimination. Only in a few cases do mainstream people seem to recognize disability discrimination, and generally only (as with racism) in its older forms. Even when discrimination metaphorically bites them on the nose, they don't recognize it or name it for what it is.

Colorblindness enforces a taboo against talking about race.
Definately a problem for disability as well. I have to dance around finding out what syndrome the children I volunteer with have, even though it's relevant (for example, knowing one girl has Rett Syndrome, I'm on the lookout for signs of motor apraxia in her - there are plenty - and can use that framework to help understand and assist her). It's viewed as rude to even mention disability. I don't feel it so much with mentioning my own disability - if there is a taboo against saying you're disabled, I haven't noticed it - but certainly with mentioning other people's disabilities, especially in front of them. This is likely a big problem with many of the children I work with, because it makes it harder for them to get information about their own disability in a direct way so they can process it effectively.

Colorblindness believes color consciousness must be racist.
Being aware of disability may not be assumed to be discriminatory, but certainly treating disability like it actually might have relevance for a person's identity often is. And if you break 'the rules' about mentioning disability (eg a child asking about disability) that is treated badly, and though children may get away with it, an adult who doesn't seem disabled probably will be considered rude. In general, however, most people are often less aware of disability discrimination in any form than they are of racism.

Colorblindness sees other racial groups but is blind to mainstream whiteness.
I've certainly seen this with disability as well. I recently noticed that when people think of what it means to be, for example, a 7 year old, or a 12 year old, what they think of is a normal kid that age. If a kid doesn't fit that, then there is often some cognitive dissonance between knowledge of their age and awareness of what they're like, as if they are 'really' some other age. But if you see several kids with the same condition at various ages, you see that there is often commonality between kids of the same age as opposed to other ages. For example, I can sort of see a 'type' among late preschool/early school-age Down Syndrome kids - they are often about a certain height, with a certain build, talk in single words/short sentences with very unclear pronunciation and are playful, mischievious, sociable and caring. Not all DS kids of that age group fit this type, and those who do aren't all the same any more than normal kids around that age are, but just because they're disabled doesn't mean their age is irrelevant to what they are like. I also see this in many other circumstances. Some people have said things like 'humans are social beings' or 'we are all sexual beings', statements which exclude many autistics. It's assumed that 'generic human' is the normal people, disabled people are 'special'.

Colorblindness believes we will all assimilate into the mainstream.
Disability blindness assumes all disabled people want to be normal.

Colorblindness says we are only individuals.
He clarifies to say:
"Actually what colorblindness says is that 'we are all individuals,' which is true, but colorblindness acts as if 'we are only individuals,' which is false. We are all individuals. We are all the same (which colorblindness admits as well). In between being completely unique as individuals and completely identical as human beings, we are all members of social groupings, be it men, women, white, black, red, yellow, brown, mixed, gay, straight, middle class, upper class, lower class. Our social group status does not define us exclusively. Nor does our common humanity. Nor does our individualism. Each of these contributes to our experience and our nature. To single out one and hold it above all others is arbitrary and misguided."
I can't say it much better than he does. I'm a human being and have some things in common with every other human being. I also have some things in common with every other autistic person, besides what I have in common with all humans. Then there are some things, and the particular mix of things, which I don't have in common with anyone. I'm unique, I'm autistic (among other groupings, such as white, female, etc), and I'm a human being.

Colorblindness believes intent, not effects, are important.
Jerry Lewis has often said 'no one is against the disabled'. Many parents of disabled children act as if loving your child excuses any way your behavior harms that child. Caregivers of disabled people protest 'but I'm a good person!' when challenged on their misuse of power. Piles of people act as if the fact that you want to do good automatically means you're not discriminatory, when that's only one part of what you must do. In fact, in addition to having good intentions, you must also a) recognize your own faults, b) understand how society distorts people's view of disability and c) be willing to listen to disabled people, even (especially) when what they say is hard for you to accept. I've probably left stuff out, but if you have those, you're well on your way. Just having good intentions is nowhere near enough.
Besides, from the perspective of the target of all this, whether someone meant to hurt you matters much less than whether they did hurt you.

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