Thursday, September 27, 2007

People Like Me Are...

I found an interesting quote today:

"As I got a little older, I saw people who moved and sounded familiar, like me in some fundamental way that other people were not. Inevitably they were being walked around in a line by staff, and coming from the nearby state institution or some of the group homes in the area. I found this ominous.
Part of the reason I ended up in institutions to begin with was my terror of ending up in one and my knowledge that given the way things seemed to work it must be inevitable sooner or later. There just were not people like me on the outside. And as the shifts of adolescence came around, what a person-like-me was, was unmasked to other people in more ways than one."

I've read that particular article before, but this time, this phrase really jumped out at me on a personal level.
I have a young autistic friend. He's considered severely disabled. For the first little while, he acted fascinated and delighted at me acting autistic (he's kind of gotten used to it by now). I thought at first it was just finding 'someone like him' or 'an adult like him' (although I don't think of myself as an adult, he probably does). But he definitely has contact with lots of other autistics, including in the very same setting I met him in. He may have met other autistic adult, I wouldn't be surprised if he has.
I wonder if what really fascinated him about me was that I was someone like him on the 'other side' of the helper/helped hierarchy that he is constantly experiencing (as one being helped). I suspect all the other autistics he's met have all been on the same side of that hierarchy as he is, all other recipients of similar kinds of help as he receives. Which means it might be that he was surprised that autistics can be helpers as well as the helped.
I can't know for sure if that's what he's thinking, of course. But it gives me another way of looking at him. He's the kind of person most people assume is unable to perceive or react to discrimination and hierarchies on this kind of conceptual level, but then, so is Amanda Baggs, and she wrote that article.

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Wednesday, September 26, 2007

Don't Be So Hard On Yourself!

Recently, I read a comment by a deaf woman who complained about people's reactions to her acknowledging that her speech can be hard to understand at times. Almost everyone replies 'Don't be so hard on yourself! Your speech is fine!' or something to that effect.
Thias annoys her, she says, partly because of the assumption that she's 'being hard on herself' by acknowledging a real difficulty she has, and partly because of the assumption that they know better how understandable her speech is. Granted, she can't hear her own speech, but she has a lot of experience with people's reactions to her speech, under different circumstances, which makes it clear to her that though her speech is usually fairly understandable, under adverse circumstances (such as talking to someone who is not very proficient in English) her speech is less understandable than most English speakers.
Recently, I experienced a similar thing. I was talking to the parent of an autistic boy I know and mentioned an idea I had (for a program where older/higher functioning autistics help younger/lower functioning autistics). She told me I should start something like that up, to which I replied that it would be quite difficult for me because of my organizational difficulties. She told me not to be so hard on myself, and that I was very smart - she could tell by how I talked. I tried to explain that in a one-on-one conversation about ideas, my strengths are more evident than my weaknesses, explaining how speech is a real strength for me, but she didn't seem to get it. She still thought I was being hard on myself.
(It's important to note that she's a good friend and a wonderful mother to her autistic son. One thing I admire about her is how she really gets that he's much more intelligent than his test results would suggest. She adamantly insists he is not 'profoundly retarded' as his IQ test scores suggest, something I agree with. His more overt abilities are in concordance with his test scores, but he shows signs of understanding much more than he can express.)
I was kind of disturbed by this. I'm not sure what to do about this. I know I have organizational problems, and acknowledging these has greatly helped me. Thinking that 'smart people can do this' led me to think I must not really be that smart. How can I get her to see that her attempt to reassure and encourage me is actually more likely to hurt me than help me (if I accepted what she said as correct)? She linked organizational skills to intelligence in her statements to me. She did so to help me feel better about my organizational skills, but a more likely result of such a link is for me to feel worse about my intelligence.
[A side note: my Dad just got my brother a ukelele, and the only human family member who hasn't been playing it is my mother. I can do Mary Had a Little Lamb, the riff to Smoke on the Water, and the scales.]

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Sunday, September 23, 2007

Blogging Meme

ABFH has a blogging meme that I've decided to do.

1. Is there a regular time of day when you compose your posts? Not really. I don't have internet access at home so I do it at the university, generally between 8:30 to 5:00 or so. And generally not right after 8:30 - not even if you take into account the time it takes to get to the computer.

2. Do you prefer to write a certain number of posts per week (or per month)? I try not to write more than one a day, and if I've gone a long time (not sure what I mean by 'long time', it's just a feeling in my mind of the thing getting distant) I try to write something. Mostly I just write when I get in a blogging mood.

3. Are you more likely to write a post when you're happy about the topic, or do you mainly blog when you feel like ranting? Generally I write when something sticks in my mind that I want to write about. If it seems to me like a blog kind of topic, that's where I write it, otherwise maybe on my laptop or something. It's a special kind of mood, not related to how I feel about the topic. I feel the same way when I'm putting together a puzzle and I suddenly realize where a certain piece goes. I fit together ideas the same way, and if it's fit together enough I can write it. Otherwise I just put it aside. Generally blogging ideas are ready to write as soon as I have them, but fiction stories may not be.

4. Do you write from notes or an outline, or are your posts mostly spontaneous? Spontaneous. I find myself talking to myself about an idea and realize I could blog about it. I try to include what relevant ideas I said to myself or thought of, otherwise just let it flow.

5. Do you try to maintain a central theme for your blog and avoid random topics that don't fit the theme? Sort of. I mostly blog about disability rights, but if something else strikes me as bloggable, I'll write it. Occasionally I jot down stuff I don't want to forget on my blog because it's most handy when I'm on the internet.

6. Are there any interesting rituals associated with your blogging? Generally I first check over my most recent posts for new comments, then log in and start writing. I have a ritual of checking Amanda Baggs's blog as soon as I get on the internet that day, occasionally multiple times a day.


Monday, September 10, 2007

You Have a Weakness in That!

A little knowledge about a condition can sometimes be a dangerous thing. People may assume that since your disability involves a particular area, you can't possibly have any strengths in that area.
Amanda Baggs made a new blog entry about the assumption that 'if you can do X, you can do Y', using the analogy of being able to identify colors but not notes, despite having normal sight and hearing. At one point she mentions how assuming everyone could identify notes easily may result in a musically talented person with good relative pitch not being able to persue a career in music simply because they can't identify notes in isolation.
I also thought of another problem. Even if their disability was fairly well understood, people might think 'why would someone with a musical disability want to be a musician? They must be in denial'.
I actually heard an example of this. In the book Learning Outside the Lines, Jonathan Mooney, a dyslexic person, was told by a college professor that he might want to consider a different major than English. When in fact he had difficulty with the mechanics of reading and writing but was excellent at expressing himself in words - a far more important skill for being a good writer. There are accomodations for difficulty reading and writing - it's much harder to accomodate for difficulty expressing yourself in words. He would write the stuff and his mother would proofread, or he'd dictate it to her. He had the ideas, she just made sure his grammar and spelling were correct. Similarly, a musician without perfect pitch has the ability to express themselves with sound patterns and make things that sound good, but may not be any good at identifying tones, at least without a reference tone. If not, they will need some accomodation for that - which is generally given. For example, when tuning a piano, most people use a tuning fork as a reference. The fact that they can't tune a piano without that does not mean that piano tuning should be left solely to people with perfect pitch. Even if you can't tune a piano, that doesn't mean you can't play it.


Tuesday, September 04, 2007

Telethons and Self-care problems

Two unrelated comments today:
Firstly, the Protest Pity anti-telethon blog thing is up. I didn't know about it until today, but apparently it's an annual thing similar to blogging against disablism day.
Secondly, I'm researching self-care problems in high functioning autistics. I'm thinking of maybe getting together evidence regarding self-care problems in people diagnosed as Asperger Syndrome in order to argue that the 'lack of significant delay in self-care' criteria of AS is misleading. So far, I've found the following articles: one comparing AS and Conduct Disorder in teenage boys, finding that, according to their parents, 50% of the AS boys and 95% of the CD boys were independent in basic self-care (washing, toothbrushing), 5% of AS and 40% of CD boys had no problems with decisions about self-care (eg deciding when to eat), 15% of AS boys and 80% of CD boys had normal telephone skills, 5% of AS and 35% of CD boys could plan their own travel, 0% of AS boys and 25% of CD boys were independent in buying major items, 5% of AS boys and 70% of CD boys had no trouble planning their own routine and 0% of AS boys and 60% of CD boys were independent in leisure activities outside of home and one studying AS or HFA adults that found that out of 16 individuals, 1(AS) had a regular job, 1(AS) was a university student, 3(1 AS, 2 HFA) had a sheltered job, 5 (2 AS 3 HFA) attended a day center and 6 (5 AS, 1 HFA) had no occupation, the one with a regular job was the only one not living off of public assistance, which in 13 of them was some form of disability pension, 9 lived in their own apartment, 1 (the student) with their parents, 5 in a group home and 1 in the hospital. Not much available, but the few studies done show significant difficulties for older 'high functioning' autistics. Note that I don't really think there is a significant difference between the different diagnostic groups or functioning levels, but if they're following the DSM, the AS people should have normal or near normal self-care skills. Instead, they have difficulties with are definately significant, in the sense of needing assistance or accomodation.
Anyway, I just thought of a way to link these two subjects together. One big problem with telethons is that they're raising money for a cure/prevention while providing nothing towards helping actual disabled people live well, with their needs met and their 'voices' (even if not actual speech) heard.

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