01 April, 2012

I'm Spasticus Autisticus

I am a big, big lover of this song and I was going to just post it on Facebook as my reasonably uninvolved observance of Autism Acceptance Day. But I happened to find an interview with Ian Dury about the song, which disappointedly ended with him sort of apologizing for mentioning autism and saying it's probably "frightening" for parents. I never thought a dead guy could stomp on my heart so hard, but it was the 80s and there wasn't even what there is now in terms of Autistic-identified people who could have told him not to apologize. So I forgive you Ian Dury, like I could ever be mad at you for long.

The main thing about the interview was that he confirmed my gut interpretation of the song, which is what I really want to talk about here.

"On the single bag there's what's supposed to be an explanatory note, which is about my tribe being...knowing our racial creed and paying no heed to such things...it can be rich or poor, disablement can get anybody. It was really about Spasticus being a slave who wished to be free, and I put at the bottom 'We too are determined to be free.' And it's based on--the idea of Spasticus is based on a film called Spartacus which had Kirk Douglas in it, and at the end bit, they say 'Which one of you is Spartacus,' you know--'I'm Spartacus,' then they all go 'I'm Spartacus,' and they hung everybody that confessed."

I've been moving away a lot from identifying as Autistic, and probably not for good reasons, but just because I know professionals are on a mission to take it away from as many people as they can and it's hard for me to want to hold onto it when every time I tell anyone I have autism they seem determined to interrogate and confound the reality of my disabled life. So I've retreated into just being slow and crazy, which are words that are available for all people at no charge; or if I'm feeling a little more political I use old words like feebleminded or very new words like headcrip--again none of these words are technical terms, and aesthetically and emotionally that's a big part of their appeal.

But this worries me the same way the word queer has sometimes worried me. The problem with only identifying with something vaguely and choosing the word for your identity aesthetically is that there's strength in community, identity, and numbers, and if everyone is called something else it's hard to find and hold onto each other, to support each other and try and work together for the things that will benefit people like us.

I have always thought that one of the worst disadvantages disabled people face is how few disabled people there are. Don't get me wrong, there are shitloads of wheelchair users, people with LDs and DDs and MH conditions, D/deaf and blind people and HOH people and people with low vision, people who use crutches and canes, people who don't use anything but have to live differently because they live with chronic illnesses, and, you know, you know a lot of people like this and you can think of all the kinds of "people like this" I have neglected to mention.

But that's all we mostly are--people like this.

I've said there are two kinds of disability and you end up fighting yourself with either one. A person is stigmatized as disabled, seen as unworthy of the things he wants from life, and has to prove himself non-disabled in order to be his own person, no matter how much he may harm himself in the process by doing things he can't do. Or a person isn't considered disabled and has to do things she can't do because everyone expects her to do them and there is no support. It's a trap either way.

Both ways a disabled person is fighting not to be disabled. The second person might have a nostalgia for the stigmas and stereotypes of "visible" disability, because it seems better than getting no support or recognition, but ultimately she feels too guilty to try and get those things. Holy shit I'm tired. What I'm trying to say is, what do disabled people think about themselves?

Basically: they do not think they are disabled.

They either think of it as something they have "overcome" or "risen above" with their accomplishments or just their personality, or they think of it as something nasty and rude to mention, or they think of it as something they don't deserve to claim because their disability isn't real or isn't that bad, or they think of it as a word that, if they used it about themselves, would indicate that they're sad, that they're giving up.

This has real practical effects on "people like us," this nameless population. We're so fucking short on disabled writers, disabled scholars, disabled teachers, disabled staff, disabled activists, disabled doctors (imagine the DSM being written primarily by doctors with mental disabilities)--we're so fucking short on people who have an identity and loyalty to other disabled people. Because we all think the word disabled is bad for us! We all throw it away and when we do that, we have nothing because we only have ourself and whatever word we have for ourself--not disabled, just different; not disabled, just has trouble walking; just crazy, just stupid, just slow--just perfectly individual and unique and alone. But our people need armies and bodies of work.

If I was going to start one organization to help disabled people, its focus would be to help kids with disabilities meet adults who identify as disabled. I've thought this for a year or two and I don't think I have the skillset for that kind of thing but it does pull on me sometimes, because it's not that people like us aren't talented and tender and brave, but that we all hang separately.

Anyway. I'm Spasticus Autisticus, is what I'm trying to say.


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    1. I have been thinking a lot about why I never identified as disabled during the years when I was very visibly physically disabled (wore a back brace in middle school/high school), and I know that the answer comes down to what you're writing about here -- there was nothing for me in that identity. It was the early 1980s, there was no Internet, there was no disability community that I had access to or was aware of, and so identifying as disabled felt like just internalizing all the negative crap that came along with the identity without any of the potential support.

      It's taken me 20 years to feel (even a little) comfortable with that identity, and it took until I got a formal diagnosis even though I've known I was autistic for two years. And it's mostly because there is community available to me now in a way that there never was when I was in high school — mostly on-line but some in real life too.

      For a while I felt like that was a sort of selfish reason to want an official diagnosis, because I wanted the security of being accepted in that community. But I think the point you're making here is a really good one -- that identifying as disabled is not just about getting support for yourself, but about strengthening the community for everybody, and being a resource for other people who are still figuring things out.

      I love your idea for a nonprofit but I would add that I am 39 and didn't identify publicly as disabled until this year. I have learned much more from younger people who accepted their identity a long time ago than from people older than me… so I think the mentor/mentee relationships is more about where you are in the process than it is about age. I would have loved to have access to disabled adults as a teenager though, and I think it's a great idea.

  2. I love you and I love this and I have more to say about it but I really can't right now, so. Thank you.

  3. Thank you for writing this.

  4. Similar to what Zoe up there said: I love this and I love you for writing it, and yeah, more to say about it but I am not of the coherency right now, so, but thank you. Very much thank you.

    another "people like us"

  5. Hi, excellent commentary. And excellent song. But I just want to say, I watched the video of Ian Dury explaining the song, and I don't think he's apologising for mentioning autism, as you said, I think he's merely apologising for not knowing enough about it. Shame the interviewer cut him off right after that.