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
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...