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[personal profile] capri0mni
Blogging Against Disablism Day, May 1st 2009


The Preamble, especially for the (temporarily) able-bodied who may be reading this:

Different disabilities are different, even though Society-at-Large lumps them all together under a single label. I have cerebral palsy; here is an explaination of what that means.

My life experiences and troubles are as different from those of someone who is Deaf (or blind), or with spinal chord injury, or chronic pain, or [...] as they are from someone who has been able-bodied all of his or her life. But, for all our differences, we do have one thing in common: Society-at-Large lumps us together into one club that none of us chose to join, and looks upon us with the same pitying and othering attitudes.

So, on days like this, we band together with more-or-less unified voices and say: "Ahem. Stop it."

The Body of this Post:

Back in the day, when I was in college and grad school (and therefore, had much more random contact with General Public people than I do now), I'd often hear these each of these two questions:

"Do you ever walk in your dreams?" and

"You write wonderful stories... But why haven't you written about someone like you, yet?"


I'd get lots of other questions, too, like: "Have you accepted Jesus as your Savior? He could make you walk!" or: "Do you have a license to drive that thing? ha, ha!"* But I'm putting these two particular questions in the same basket, because they both relate to the tricky issue of self image, and I can answer both questions with a single example.

In answer to the dream question (which, by the way, is only a slightly more polite version of "Don't you wish you could walk?"**):

No, I don't ever walk in my dreams, at least, not that I ever remember. The dreams that are powerful enough to stick in our memories are about difficult issues we're working through. If the issue I need to work out involves "Getting from Point A to Point B," my dreaming brain is going to weave a metaphor from all the experiences I've faced getting from Point A to Point B in my ordinary waking life and magnify them to the Nth degree. These dreams have a lot of treacherous, hard, and slipperly floors, narrow doorways, impossible-to-find elevators, and stairways that make no sense. One dream I had a couple of years ago ended with me telling the mayor: "I don't care if you think I'm 'an inspiration!' I don't want your key to the city -- I want you to put in some god-damned curb cuts!"

If getting from Point A to Point B is not the issue, my brain just skips over the in-between parts, and cuts from scene to scene like a movie.

The title of this post comes from a dream, from one I had way back in my late teens or early twenties, and it's also one I tried (and failed) to write into a song:

I was the guest of honor at some sort of party, at a meeting house where my mother often volunteered. I was running late, and feeling pressured because I knew the guests were all there waiting for me. The door into this meeting house (in real life, mind you) was narrow, up a single steep step, and the floor just inside the threshold was worn, uneven, painted wood that was slippery when there was even a molecule of water. Now, in my dream, I had to get through this door on my crutches (and when you're walking up steps on crutches, in waking life or dreams, the laws of geometry and ergonomics make it impossible to put the tip of the crutch in a full upright position, thereby making the "non-skid" tip virtually useless).

While I was struggling thus, self-conscious, and trying not to fall with a full audience, someone in the crowd saw me and said:

"Oh, look! It's Peter Pan!"

And I shouted back: "That's right! I can't walk. But I can fly!"

And for years, I kept the thought in the back of my mind that I would turn that line into a bumper sticker for my chair, or a sweatshirt slogan, or somesuch.

As for the second question, first off: "Why haven't you written a character like you, yet?" is, for all the questioner's good intentions, insulting and hurtful, because it implies that a character can only be 'like me' if she or he is also in a wheelchair, even if I'd given that character my goofy laugh, or irrational fear of earwigs simultaneous love of spiders, or my loathing of moralizing kids' cartoons. It's especially hurtful because the question often comes from people who've known me a relatively long time, and have read several of my stories, so I'd hope they'd see more of me than just the chair I use.

Second, it's damned hard to write well about disability, and still write sometthing clear that actually says what you want it to say.

For an example:

Back in the spring of 2002, I got it into my head to try writing a song, and I thought I could use that old dream's "Peter Pan" lines as a refrain, and make it a protest song against disablism.

But... As soon as I tried to put that song to paper, I realized that "Peter Pan" made the song say exactly the opposite of what I want to say. I equate Peter Pan's ability to fly with the ability to experience joy (also, in my dream, I was trying to get to a celebration). But Peter Pan is also the "Boy Who Never Grew Up," and a symbol for perpetual childhood. And Society-at-Large already has the infuriating habit of infantalizing the disabled (do you know what it's like to be forty-something, and have complete strangers chase you down to give you a lollipop? -- I've never liked lollipops, even when I was five).***

I started out trying to write an autobiographical story-song about my experience with disability, but I ran up against the fact that to do so also meant reducing my experience to a metaphor. And people with disabilities already spend their lives being treated as metaphors for the able-bodied, rather than real, three-dimensional people in their own right.

It wasn't until this past August that I finally figured out how to make that point in a song:

Well, I won't be your metaphor
for grace (or lack of grace),
'cause I am simply human
in this complex human race.


It only took seven years, three months, and change since my first attempt (The full song can be found here: Simply Human). It will take a bit more work to figure out how to write a fictional disabled protagonist.







*Here's a tip: if you ever find yourself contemplating saying either of these things out loud to a person in a wheelchair, stop yourself. You'll greatly reduce the risk of that person dismissing you as a shmuck.

**Here's another tip: If you're wondering why that's an impolite question, try substituting "...could walk?" with: "...were a man?" or "...weren't so short?" or "...were white?" and listen to the way it sounds.

***This is the song that came out: Magic is just for children (Peter Pan still showed up, but in a very different way). It's not a very good song, really, as in being something that's actually singable, but it's a first attmept, so...

Date: 2009-05-02 01:03 am (UTC)
From: [identity profile] alryssa.livejournal.com
I wish I could say I was surprised at the sheer dumbassery of people who ask questions like that.

Date: 2009-05-02 01:10 am (UTC)
From: [identity profile] capriuni.livejournal.com
heh, yeah.

Sometimes, though, that second question comes out of the mouths of people I respect and admire, too. So that's awkward.

But there is something to be said for that question, along the lines of: "If you want something done right, you have to do it yourself."

Date: 2009-05-02 01:58 am (UTC)
scarfman: (Default)
From: [personal profile] scarfman

I never came up with a topic. I feel B.A.D.D.

Date: 2009-05-02 02:28 am (UTC)
From: [identity profile] capriuni.livejournal.com
I'm glad to see your ability to pun is still intact, though ;-P

Date: 2009-05-04 08:07 pm (UTC)
From: [identity profile] haddayr.livejournal.com
Ah! Here's the post!

Very good post.

I am writing a novel in which the main character uses crutches.

Date: 2009-05-04 09:32 pm (UTC)
From: [identity profile] capriuni.livejournal.com
Cool! Let me know how that goes (I love having writerly friends)!

Last summer, sometime, the idea came into my head to create a disabled superhero comicbook character that was part human / part microraptor (sorta). And I wanted to make his condition the result of misguided attempts to "Fix" his "abnormal" self in utero.

...Um. Yeah... Well, it's ComicBook!Science. No more of a stretch than the bite of a radioactive spider...

And in this world, it would be a sort of dystopia for the disabled, because there would be such a social assumption that science fixes everything, and if you're one of the few who can't be fixed, you get institutionalized into Dickensian-like "houses".

This last bit was also because I wanted to be able to pass a disability Bechdel test... I mean, there are disabled heroes like Professor X of the X-men, and Daredevil, and Oracle (nee Batgirl), but you never see any disabled civilians in these stories.

...But I'm not very good at writing the comic book genre... so...

Date: 2009-05-04 09:42 pm (UTC)
From: [identity profile] haddayr.livejournal.com
Ooooh. I like your idea!

I'm staying closemouthed about mine; her disability is only a small part of the story, and it's a ghost story, so nothing quite as wonderfully fantastic as this one.

Date: 2009-05-04 11:13 pm (UTC)
From: [identity profile] capriuni.livejournal.com
I totally understand about being secretive about your story while you're writing -- I'd love to know when all of that is in the past tense, though!

assumptions

Date: 2009-05-04 08:16 pm (UTC)
From: (Anonymous)
As usual, you are spot on, CU. I am reminded of the assumptions people make every day without even realising it. Yelling in an attempt to communicate with someone who is blind comes to mind.(Where did that twisted logic come from?!) When I had chronic heart failure and was on oxygen, I threatened to get a t-shirt that said, "No! I do not have emphysema from smoking!" Or, "I am not, nor ever have been a smoker!" Maybe I shouldn't have been surprised at that assumption, but I was. So many people would just start talking to me, total strangers, about why I was on O2. Unreal!

Thanks for pointing us to your blog.

ATB,

katlaughing

Re: assumptions

Date: 2009-05-04 09:36 pm (UTC)
From: [identity profile] capriuni.livejournal.com
Hiya, Kat!!

Yeah. People tend to see any visible disability as a licence to be intrusive and rude. One bumper sticker I've read about people sticking on the back of their chairs is:

"I am not your after school special!"

(and glad you like this place.)

Is your LJ username Sagewalker, by any chance? Did you sign up a couple of years ago for NaNoWriMo?

Re: assumptions

Date: 2009-05-05 06:17 am (UTC)
From: [identity profile] garyandcoy.wordpress.com (from livejournal.com)
Thoughtful post for BADD 2009!

My tip: Never ask the person pushing the chair: "Does she take sugar?"

Love the layout and design!

Re: assumptions

Date: 2009-05-05 07:27 am (UTC)
From: [identity profile] capriuni.livejournal.com
Thanks, Gary! I waffled for about a week over what I should write, since I wanted it to be something I hadn't yet gone on ad nauseum about already (the subtitle to this blog has a reason ;-)).

(Another Pro Tip: Or hand the bill to the abulatory person, when it's the person in the wheelchair who has asked for the check...)

(The song in the background is "Vive la Compaigne," btw.)

Date: 2009-12-13 12:23 am (UTC)
jesse_the_k: Sketch of pair of hands captioned "If you're OCD and you know it wash your hands" (OCD handwasher)
From: [personal profile] jesse_the_k
Sorry I missed this the first time around — what an excellent post!

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