My aunt and uncle visited from Wyoming today and I showed them the drawings and pictures their daughter’s third-grade students sent me last Spring. There are two series of letters since I replied once and then they all wrote back, practicing their cursive and sharing weird stories, silly jokes, and curiosity about my life. Most of the letters begin “Dear Cousin Kay,” which is sweet and cracks me up.
To their first set of questions, I explained how I get help with dressing and using the toilet. I answered questions about my favorite sport, team, color, children’s book and all that. Also, that’s what my self-portrait was all about. My favorite poem of the many the kids sent was this one by Gunnar:
Roses are red,
violets are blue,
I bet anyone would take a bullet for you.
Scary, yet sweet, right?
I replied to every disability-related question they posed and their second set of letters showed more curiosity.
“How do you get the tube down your throat?”
“How do you get into your scooter?”
“Did you know some electric chairs are run by movements of eyeballs?”
And this one:
“Is your life hard or super-hard?”
For some reason, that last always makes me think of this lovely little encounter I had in a grocery store in Tempe, Arizona, years ago. I was just a couple blocks from my apartment, shopping early so the short ride home in the heat wouldn’t spoil anything, when a woman stepped toward me.
She had a little girl with her, about three, and the mother said, “Excuse me, do you mind if I take a moment with you to explain to my daughter about your scooter? She’s curious about it.”
The girl stood shyly nearby, trading wide-eyed looks with me.
“Um, okay.”
The woman squatted so we were all about the same height, tapped a finger very gently on the top edge of the metal basket that hangs at the front of my scooter, and told her daughter how some people don’t use their legs or need to sit when they’re tired but still have things to do. She noted that the scooter was a very good thing because it helped me get around.
It was a very brief encounter. The mother didn’t intrude further by asking me to answer questions or explain about myself. She let her daughter look for a heartbeat or two, we traded smiles all around, then she thanked me and we all moved on. The little girl looked back at me a few times, then they were gone.
This one encounter stands opposed to the dozens and dozens where I’ve heard a parent shush a child’s question or cover their pointing finger as they want to know what the deal is with me. Those parents ducked their heads in embarrassment, or a few gave me a “sorry about that” smile. All left the impression that I should not be talked about or approached.
“Is your life hard or super-hard?”
I have no idea how to answer that simply. I’d never say “super-hard,” though to be fair, I know at least one family member who would say “super-hard” because of their relationship to me. But somehow I love the question. Maybe because by itself it says so much.
Crossposted at The Gimp Parade
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Beautiful post.
A few weeks ago my kids and I were driving around a parking lot looking for a space nearest the entrance. My 7 year old said, “I wish we could park in the handicapped space, Mom. What can we do to become handicapped?” I was speechless. I didn’t know what to say. I still don’t. What would you say, Gimp?
Your post sort of reminds me of how some people treated me when I was going through cancer treatment (been in remission for 6 months now) — like I was less than who I had always been, and now defined by my disease. Pity looks. Glad-it’s-not-me Freudian slips.
I left out that there is a middle-ground of parents who don’t bring their child to me for a little education, but patiently answer their loud questions as if it’s reasonable to be curious. I’m cool with that too.
Silent Spring: Yay for remission!
I’d tell the kid that someone has to break a leg or get a heart condition that makes it hard to walk far. Or use a wheelchair, so they need to be close to the building to push it or have the wide space to deploy their lift or ramp. Or lots of other conditions where the person needs the help of either proximity or the super-wide space. Every adult has that longing for the empty parking space, I don’t expect you can rid a child of it.
Incidentally, when I got my first disabled access license plate in 1983, I named it the Power of God Parking Permit, because that sort of exceptionality to a common modern problem seemed so bizarre to me. More people have them now then before though, so it’s not the total bonus it used to be.
Thanks for saying this. I’ve heard it lots of times, and I believe it (as the sibling of an adult with a cognitive disability, it’s what I encourage other parents to do), but there’s a part of me that still wants to shush my kid when she starts asking loud questions.
As for the parking space question, I responded over at Gimp Parade, but I’ll say here that I think that kind of question is a great opportunity to school the kid in aspects of disability that most folks without disabilities don’t think about. If the kid lives in a building with lots of steps, or regularly goes to a restaurant or a store with no ramp, ask her how she’d get around if she was in a wheelchair. If she takes the bus a lot, and bus stops in your town don’t have benches, ask her what she’d do if she got tired easily and couldn’t stand for a long time. And so on.
Most kids are powerfully empathetic. They’re good at putting themselves in someone else’s shoes. They like thinking about problems and how to solve them. And they’ve got strong senses of justice, of right and wrong. In my experience, they’re really open to thinking about disability in a thoughtful, activist way.
I love that. I love “excuse me, do you mind?” Not only responding to you appropriately, but also teaching her daughter good manners, AND allowing that curiousity and shyness are not evil things.
Thank you for that story, Blue. I admit, I would probably instinctively shush my child because I’d be scared of being rude or giving offense. But your post made me think about how people might see it another way.
Actually, when I was reading the beginning of the story, I thought you were being sarcastic when you said “lovely little anecdote” because I thought it was going to be a horror story about how some stranger used you as an object lesson and an educational tool. If you don’t mind my asking, is that a concern for you?
If you don’t mind my asking, is that a concern for you?
I guess I don’t really think about it. If someone came up and used me to “educate” their child in some really offensive manner, I expect I’d feel blindsided as much as anyone would. I don’t have any quick ready answer to spit out, either. Maybe I should think on that.
I often wish I could get out of it, but anybody with a visible disability is stuck with doing “education, and not just of children, either. If you don’t respond courteously, even to annoying people, you perpetuate stereotypes that damage all of us.
Once a small child approached me to say, “You should have been careful!”–evidently having been warned that people in wheelchairs got there by having an accident. (Should I have told her I have MS, and that no matter how careful she is, it could happen to her?)
I often wish I could get out of it, but anybody with a visible disability is stuck with doing “education, and not just of children, either. If you don’t respond courteously, even to annoying people, you perpetuate stereotypes that damage all of us.
This immediately made me think of minority students on college campuses, or anybody being in a place where they are unusual — there’s a burden to help “educate” those who haven’t had close contact with your race/class/type before, and while it’s great to raise the collective IQ, it’s a nontrivial personal load in addition to your normal life…
The alternative to that though, acm, is the sort of specialness that being an other makes you feel. In high school I was one of very, very few Jews, and I loudly reminded everyone I’m fucking Jewish, and blah blah blah. Then I went to Reed College, where about a third of the students are seemingly Jewish, then the whole being Jewish just got boring.
Anyway, enough of that tangent, the whole story reminds me of the line in Angels in America where Roy Cohn tells Joe “this is no country for the infirm.” It seems that people just don’t know how to handle disabled people. I think most able people, and I include myself in this, feel uncomfortable when they see disabled people – at least those who don’t see them often in their everyday life.
That mother in your story though is really fucking awesome. A child’s curiosity should always be acknowledged.
acm:
It’s such a dilemma. On the one hand, education is so important, and those people doing the tokenizing and/or without prior experience need it most, but it’s just so exhausting, when you’re the person expected to provide it. You don’t get to be a real person any more; you’re a cipher, an object lesson, and it grinds at a person, being that. I still haven’t found a good balance in my own life.
Raznor:
I’ve suspected for a while, Raznor, that it comes down to a very basic thing, one that I’ve picked up more from working around death than anything: seeing the realness of disability and acknowledging that it’s something real people have to deal with is, to most able-bodied people, a terrifying reminder that it could be them, too. It’s the same fear as the fear of the elderly or obviously ill, a sort of contagion of mortality, and in our culture, the able-bodied will generally do just about anything not to think about those things. I may be a newcomer to ability-issues stuff, but I took a shine right away to the use of the phrase ‘temporarily able-bodied’ to describe people like you and me.
Some degree of needing to worry about ability and disability on a personal level is inevitable for even the halest-and-healthiest, and I’d argue that it’s fear and arrogance, most of all, that keeps us from acknowledging it and maybe looking into helping society better serve those of us not currently in the able-bodied column.
Dealing with issues of privilege requires real empathy. And it’s one thing to empathize with people belonging to a category you never will or never can. It’s another to empathize with people in situations you could very well be in tomorrow and still acknowledge your privilege. If you’re pushing to make your office building more universally accessible, how far do you have to go from thinking, ‘Boy, this isn’t fair, imagine how much of a pain in the ass this would be if I were using wheels’ to ‘I could be using wheels’? Right away, because of the necessary empathy, you’re dealing with thoughts the average able-bodied person doesn’t like dealing with. The only way to insulate themselves from those thoughts is to shut off the empathy. And right there, we’ve got a problem.
(Well, probably the problem. But that’s another argument.)