30 November, 2010

the spirit of the staircase

is the word for really good things to say that you think of when it's slightly too late. Recently I had some in my child developmental disabilities class. I obviously need a tag for this class, but anyway.

The first one wasn't really a lack of something to say, I just spaced and didn't get to make an answer that would have been very easy. Basically the professor asked a question which assumed that no one in the class had autism. This is rude, since she knows I have autism, so I would have liked to respond gently and politely to the question, from my own personal experience.

The second one I just couldn't think fast enough though. We watched a movie about autism which was mainly parents and professionals, but at one point Temple Grandin appeared and spoke in the movie. I don't really like her, but anyway. After we watched the movie, my professor said something like, "Can you see how Temple Grandin's communication [or social skills or social reciprocity or something, I forget] is lacking?"

I said, "Well, we can't really tell from the movie, because we don't see her talking to anyone else, we just see her talking to the camera."

"Really?" my professor said, in an amused way. "You couldn't tell that she was different?"

My friend said, "Well, we know that she has an autism spectrum disorder, so it's hard to tell if we would know if we just saw her."

The professor said, "Speaking as a clinician, you can...well, everyone always laughs when I say this, but there's a certain smell--not a literal smell, but you can just tell when someone's autistic. Come on, let's talk about it. What is missing from Temple Grandin?"

But what I would have liked to say, when my professor said, "What, you couldn't tell that she was different?" would not have been mean or anything, but just low-key. I think that a lot of the time, just insisting on saying what you actually experience and think in an environment that is really marginalizing can be a pretty violent form of rebellion even if you are talking slowly and not being harsh to anyone. So, I would have said:

"Well, it's true that there's sort of a constellation of physical actions, like stimming and toe-walking and maybe including voice and facial expressions...well, it's like a type of body language that I click into really well and it feels really familiar. So that's how I can sense when someone else is disabled. But that doesn't really have to do with anything being 'missing' from Temple Grandin because I don't know enough about her life to know what she can't do."

And this part is for fun and isn't what I would have actually said, because it gets kind of shrill, but I'll just type it up for posterity (this is the spirit of a really long staircase):

"Besides, I don't really think of disabled people as missing anything and I feel weird about watching videos of an adult who seems satisfied with her life and trying to say what she's 'missing.' I mean, is that what you think about me when I'm talking? That's not how I feel about myself. As far as I know I'm the only person in this class with a significant disability--and by significant I don't necessarily mean severe, I just mean it affects my life at all times and in all places, and it's lifelong. So I mean I've always lived with it, and that's just not how I feel about disability. It doesn't make me uncomfortable and I don't think it's sad. When I see other disabled people I feel like, 'Oh cool, another disabled person'--I don't feel like something is missing. I love my friends with disabilities and I love the kids with disabilities I'm working with right now. They're swell people. [I don't really say swell as much as I'd like to.] Sure I can identify a lot of disabled people on sight because there are particular ways of moving that are more common for disabled people--but it's not because they don't have something that other people have, we just look different from them."

(As is usually the case, Amanda Baggs wrote a much better post about this sort of thing.)


  1. Heh, I wonder if your prof would 'smell' the autism on me.

    Seriously though, I do often wonder if I look disabled to someone 'in the know'.

  2. Wow, I somehow missed that post of hers. It *is* very good!

    (I think yours is very good, too, though. And I'm sad you weren't able to get these ideas out in class, because this would be a great discussion to have with a classroom full of people studying to be people who work with developmentally disabled children!)

    It might just be me, but the phrasing your professor used --- *smelling* the autism on you, like a dog smells fear or whatever --- seemed really creepy to me. Kind of a predatory-animal vibe to it, that I'm sure he didn't intend.

    Finally, @Fiona - I've been told by several "people in the know" that they could tell I was different before getting to know me and finding out I was autistic. One was a psych professor, another was my boyfriend (who had a stepsister with PDD-NOS and mild intellectual disability). My sister has also told me that, due to having grown up with me, she can recognize other autistic people when she sees them.