"Is your life hard or super-hard?"
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,Scary, yet sweet, right?
violets are blue,
I bet anyone would take a bullet for you.
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?"And this one:
"How do you get into your scooter?"
"Did you know some electric chairs are run by movements of eyeballs?"
"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 Alas, A Blog
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7 comments:
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.
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?
I can tell you what I'd be inclined to do, as the father of a three-year-old who is growing up with adults with both visible and invisible disabilities in her life.
First I'd ask her if she knew what it meant to be handicapped, and ask her to define the word if she said yes. It sounds like she may not be quite clear on the concept. If she was confused about what handicapped parking spots were for, we'd talk about that.
If she understood it, but just thought that having a disability would make getting around easier because of the parking advantages, I'd ask her to think about some of the specific ways in which getting around would be harder if she had various disabilities. I'd try to give a variety of examples --- not just wheelchairs and crutches.
I suspect that by that point most seven-year-olds I know would be rolling their eyes and saying "okay, I get it." So I'd probably stop there.
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.
I think it is cool that the mother stopped you and explained to her daughter in basic terms why you had your scooter, instead of schooshing her quietly away. In a way i think it may be a hard thing for allot of people to explain disability(s) to their kids because they do not know enough information and/or are uncorfortable adressing the subject. in some ways it is allot like parents adressing the sex issue at home. some hate to discuss the issue at home.
Years ago, I had a little boy in the grocery store ask me about my power chair, "Is it kinda like a truck?"
Cracked my mom and me up.
I used to wonder if that reaction I saw so often in adults when Cress & I used to go shopping or what have you--that wild LEAP backwards when first noticing someone using a wheelchair or scooter, that frenetic "Oh, EXCUSE ME!" when they weren't anywhere near in the first place--isn't a result of being JERKED backwards so often by parents as a kid. I've seen that so many times too--yanking the kid back when s/he wasn't in the way in the first place. I think that creates part of that strong recoil reaction in so many able-bodied adults. That scooter story is sweet; I wish more parents behaved like that.
Interesting thought, connecting the childhood jerk to the adult surprise.
Yeah, that leap backwards is weird. And the "Excuse me" that appears to be an apology for being anywhere within ten feet of the wheelchair.
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