01 May, 2010

Accidental Happiness Day

First I just want to tell you guys the very best Google search that has led people to this blog:

"can an autistic person seem smart and be an asshole"

Hopefully their question is now answered. Also I wanted to apologize because it's Blog Against Disablism Day and I figured I'd get angry about something and be able to write about it, but today I woke up feeling incredibly happy. I think my uncomfortable fallacy post from a few weeks ago is a good post about a particular kind of ableism. Amanda Baggs's BADD post If only, oh if only is a really good post about feeeeeelings, which I'm sure is the subject I would have ended up writing about if I had been in the mood.

But: why I'm incredibly happy. Yesterday I watched the live webcast of the Interagency Autism Coordinating Committee. As it says in my sidebar, any discussion of policy goes completely over my head so I'm not going to try to talk about the IACC meeting in an intelligent way. You should read the transcript or watch the video when they go up on the IACC website.

I was basically watching it because Ari is on it now and I was interested to see how he did. And of course I was a bit scared for him because I don't feel safe about that kind of people. About the time I started watching, a guy was making a big speech that I wish I could remember more accurately, but it contained basically every awful thing you could say in a really short period of time. "If you're a parent, or just any person, or an individual," he said, and I got excited because sometimes individual is a euphemism for disabled person, "an individual raising a child with autism, you must be going through hell now that this disease has struck. But you know what they say--if you're going through hell, keep going."


At the same time, this is completely ordinary and unsurprising. It's not like I was like, "Oh poor Ari having to listen to that" because I constantly hear that stuff in the real world, and you probably do too. For me, it's not even the hell thing or the disease thing, it's the completely ignorance that people with disabilities have feelings. Seriously, if he'd just said "autism is a terrible unbearable disease and it must be hell for the people who have autism," that would be something. But no. People with disabilities aren't upset or not upset; we just...aren't there.

Then as I watched the rest of the meeting, two things happened:

1. Ari would reframe stuff. For example, Geraldine Dawson from Autism Speaks presented research which included the fact that a lot of ASD people have some form of mental illness and a lot of ASD people are on psychotropic drugs. Ari said something like, "The amount of people with developmental disabilities who have mental illness isn't as high as the amount of people with DD who are on psychotropic drugs. Are you studying how many people are being inappropriately given drugs as restraints?"

This was really neat because just as Francis Collins (the going through hell guy) was coming from a perspective of assuming that everyone thinks autism is awful (and that everyone who thinks or feels anything does not have autism), Ari was talking as if he assumed that everyone a)thought of autism as a developmental disability, not a disease, and b)was really interested in people with DDs being treated ethically.

2. During the public comment section, two people with ASD talked.

Both of these things made me very excited and led to my feeling of happiness when I woke up today. Usually when I hear the word "autism," I don't feel at all safe or welcomed and I don't think that the things that are going to be talked about are things that are important to me. Some of the people who were at the IACC meeting thought it was a meeting about Autism the Horrible Disease. But other people thought it was a meeting about Autism the Disability, and both kinds of people got a chance to talk.


  1. Oh I so want to see that! I'll be looking for the video.

    I love that google search! So much. You should also know that when I googled Benjamin McLatchie a few days ago your post about him was one of the first links that showed up.

    Today, Blogging Against Disablism Day, is the day that I am cowering in the library bemoaning the inaccessability of Vassar College's Founder's Day, a day on which basically everyone gets drunk and the campus is a giant boombox. Today when I woke up in my room I got hit by blasting music from the people above me and screaming from the field outside. I know that the whole setup of this day is built around neurotypical people to my exclusion, but I don't know whether I have the right to ask them to make changes? After all there are a gazillion people that go here and I am only one of them.

    Oh dear. Is this a good relevant comment to leave here? I remember when you said you were getting comments not posted on FWD because they weren't quite relevant. Maybe I'm using your posts to whine about ASD stuff in my life. Is this disrespectful?

  2. Um
    I think trying to be relevant is gross.
    I mean, it's none of my business whether FWD/Forward cares about people being relevant. And they're a big group blog so it's probably more important that people be on topic there. But I'm not and I don't care. And I think you have the right to approach people about it if you want to (I wouldn't because I'm a weenie and prefer to opt out of anything mildly difficult, but I generally think people should try not to be like me).

    The IACC video is the best video in the world, Ari looks like a giraffe in it because he keeps leaning his head back whenever he's thinking of something to say. That isn't my whole reason for liking it but it is like 20%.

  3. (And I liked your comment on the offering help post. I posted another comment that was rambly and not as diplomatic as yours and I'm not sure it will get posted.)

  4. Yay your comment got posted! I didn't think it was that rambly.

    Aggh this is making me really sad that the video is not up yet! I am really excited to see someone acting all nonstandard-body-language-like and simultaneously being taken seriously in a policymaking/advocacy sort of setting thing. That last sentence was really confusing to type out.

  5. I mean, I think he does standard body language when he's in that kind of situation. It's hard to tell in a video though because the camera is just on people's faces so you can't see where they're looking.

  6. Oh, so I should say this, and hope that it's a compliment. It's because of you and Ari and Zoe and your comments on the TPGA blog postings and your blog postings here that I am a lot more aware of this sort of attitude.

    My daughter's kindergarten teacher loaned me a book written by Dr. Kenneth Bock. He's a DAN doctor, and I really don't know much about DAN, or him, or his approach, so I started to read it, wondering what his methods might be, and why my daughter's kindergarten teacher liked it so much.

    One of the first chapters was him talking about the kids and parents. . . and then (and I'm paraphrasing here) he said something that I had to reread like three times to get a handle on.

    Essentially he said, that Patient X was having a really hard time communicating, that it must have been frustrating and hard and painful and then he said (and this is the part that I had to reread) that the only thing harder than what Patient X was going through was what Patient X's parents were going through as he struggled. And i thought. . . "huh?" and then I thought, "what his PARENTS were going through was HARDER??"

    It irritated and frustrated me, and then made me think about things that you and Zoe and Ari have been saying all along about how prevalent that is. . . and I've just not really noticed it.