Monday, March 13, 2006

The links on the side

You may notice that I now have three disability related links. Here's why I chose them, as well as some related ones: has the tagline "The REAL Voice of Autism". This is in response to some curebie organization calling themselves the voice of autism when if they have any autistics speaking, they're just tokens.
They have a compilation of writing by autistics, including most of Amanda Bagg's writing. Incidentally, Amanda Baggs has a blog at, on this same website. They also have some good links, but unfortunately after a server failure they lost most of them. Some they've gotten back, however.
One thing they link to is a great page called, which starts out seeming like most curebie websites, describing a low functioning autistic woman, but it turns out the autistic woman is the author of the website and she describes how she wants to be viewed.

Next, there's the Lissencephaly Network. Lissencephaly is a condition where the brain is smoother than in most people. Lissen means smooth I think, and cephaly is definately brain/head. Because of a smooth brain, lissencephalic people are profoundly delayed and have various other disabilities including CP and seizures. Much more info about that at the Lissencephaly Network.
But why, out of all the websites I see about various rare disabilities, did I link to that one? Because they view lissencephalic people, part of that group so often rejected and dismissed and discriminated against, as worthwhile. For examples, in the articles section there's a section titled "you just don't get it!" which shows to me that these parents do get it. They view their kids as worthwhile. I especially like the one titled "No Trades Allowed".
Which reminds me of a book I want to read but haven't got the chance yet. This book is First Contact: Charting Inner Space, by David Hingsberger, available at Diverse City Press. In this book he talks about the value of profoundly developmentally delayed people. I first heard of it from Amanda Bagg's article The Meaning of Self-Advocacy, in which she quotes that book. My favorite line from that quote is "For those labeled "profoundly retarded," emphasize the word "profound.""

Next is It's a good website, but not as important to me as the other two. But now that Ooops! Wrong Planet seems to be gone, it's the one I know of with the largest link collection. It's also one that was much more important to me in earlier times, and it's where I learnt about ("pathological") demand avoidance, which has helped me understand some aspects of my behavior. Although I think my own "can't help the won't" is trauma related, I probably am neurologically similar to demand avoidance people, and certainly my outward behavior has been similar at times. Which reminds me of the PDA Contact Group, which is not much different from most little parent-run support groups for rare or newly described syndromes. But which I'm eventually planning to post on their forum about my own "can't help the won't". And by the way, "can't help the won't" is a phrase applied to demand avoidance, that it's not that they can't do it, nor that they are simply defiant, but that they can't help refusing to do it. I'm like that some of the time, and it seems to be related to feeling triggered. My current theory about it is that I was pressured into cooperating while being sexually abused. Similar to deciding to hold in my feelings to prevent conflict with teachers when I entered my second school, when the abuse stopped I think I decided to never, ever give in like that again. So it ended up where if I'm amenable to a demand I'll do it, but if I'm not, I either procrastinate or refuse, if I refuse, the person demanding it pressures me, this reminds me of my abusers pressuring me, I get triggered, and at that point I am restricted by a number of emotional rules, especially not giving in, but when it gets really bad exposure anxiety type stuff comes up where I can't say clearly what is going on for me, I must hint at it. Once I was dissociated and Mom kept asking me what was going on for me and I was trying to tell her what was going on without being allowed to say "dissociated", for example. In terms of procrastination, sometimes I become willing to do it, more commonly it eventually reaches the point where I outright refuse and the process goes on from there.

Yet another tangential post. Had it not been tangential, however, it would've been much less interesting.

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