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Monday, May 01, 2006

Blog against disablism day

Today is Blogging Against Disablism Day, and our need to fight against disablism is registered in part (if only in small part) by the fact that we don’t rightly know what to call it.  We’re talking about discrimination against people with disabilities, of course, but some people call this form of discrimination “ableism,” optional comma, and some call it “disablism.” This is actually not a trivial matter; rather, it’s a trivial index of a very serious problem, namely, that discrimination against people with disabilities is not really part of the public lexicon, because it’s not an important part of public consciousness or public policy.  That’s why someone like David Frum can write something like this . . .

Conservatives, however, see the things they dislike in the contemporary world—abortion, the slippage of educational standards, foreign policy weakness, federal aid to handicapped schoolchildren—as all connected, as expressions of a single creed, a creed of which liberalism is just one manifestation.

. . . and even a good fellow like John Holbo barely bats an eyelash, except to say

This passage cracked me up. (Belle was moved to inquire solicitiously: “Are you OK, honey?”) It is, of course, precisely because people know some conservatives see all these things as connected that some people think some conservatives are bats. . . .

Seriously, here’s a cautionary lesson taught by the 1960’s (you’d think conservatives could learn such things): just because you feel that everything is, like, so connected in a mysterious way, doesn’t make it so. And for damn sure you don’t have the right to bother other people with constant reports of your weird but strong intuitions of, like, total interconnectedness.

It almost makes me feel sorry for neo-cons: trying to hold decent seminars on foreign-policy—US military posture in the Middle East, etc. ,etc.; always having to step on the conservative faithful to keep them from breaking in with ‘deeply-connected’ tirades against wheelchair-ramps in schools.  Tinfoil hat stuff.  Yeesh.

It’s true that Frum sometimes writes and thinks as if he’s taken a monster hit from the Axis of Evil Bong, yes.  But can we spare a word specifically for the claim that conservatives dislike abortion and federal aid to “handicapped children”?

In the course of her hostile review of Life As We Know It, Jean Bethke Elshtain managed to deliver herself of an especially dishonest little paragraph.  It went like this:

Bèrubè’s [sic] cardboard cutout pro-life politician denies rights to living persons.  One wonders who does this. Who are these people? He calls the implications of holding that humans have a right to life “only until they’re born” staggering, and this would be true if anybody held to that view. But I can’t think of a single pro-lifer who does, certainly not to judge from the literature I received from a number of pro-life groups.

Think harder, Professor Elshtain!  Think of the obscure Texas pro-life politician who has not only executed dozens of living persons but has publicly mocked one such person’s pleas for clemency.  Or think perhaps of one of his speechwriters, a widely published and oft-cited author who clearly does not believe that “handicapped children” have a right to education or health care.  (Yes, I know I mentioned Elshtain’s review last year, in the course of writing about abortion and disability.  But it’s relevant again!)

Conservatives are hereby invited to repudiate David Frum and support the rights of “handicapped children,” beginning with their right to a “free and appropriate public education in the least restrictive environment,” in the words of the Individuals with Disabilities Education Act.  Repudiate David Frum anytime you like, good people!  Blog operators will be standing by night and day.

And now it’s time for a Jamie story. But first, a little prefatory remark about these Jamie stories.  Most of them, you’ve noticed (if you’re familiar with the genre), make the point that Jamie is really quite bright in ways most people don’t ordinarily associate with Down syndrome (and boy, do I have a cool update waiting in the wings); a couple of posts have chronicled Jamie’s remarkable improvement as an athlete.  I write the “Jamie is quite bright” posts not only to show that Jamie is quite bright, of course, but also to try (as best I can on a humble blog) to change the public perception of children with Down syndrome in general—and to make the ancillary case that Jamie’s talents owe something to the programs of “early intervention” that he (and we) were lucky enough to enjoy more than ten years ago.  For it should be clear—and I’m a-lookin’ right into your shriveled, blackened heart, Mr. Frum—that a Jamie without rights and without state aid wouldn’t quite be the Jamie we know and love today.

And yet our love for him isn’t contingent on any of his accomplishments.  Even if he weren’t smart enough to do two-digit multiplication almost as quickly as any nondisabled child, we would still love him.  Even if he weren’t coordinated enough to smack line drives on both his at-bats in Challenger League baseball this past Friday evening (against his father’s overhand pitching, no less), we would still love him.  And even if he weren’t so thoughtful as to remind me that I could put an ice pack on my aching lower back while driving to Giant for the groceries he so badly wanted to buy yesterday morning, we would still love him.

Just so that’s clear.  And now for the story, which has to do with how Jamie has grappled with one of his disabilities.

I’ve mentioned before that he has trouble with some forms of abstract thought.  And what’s more abstract than time?  Only four or five humans now alive understand it, though interestingly enough, one of them has a pretty significant disability.  When Jamie was ten or so, he began to use temporal markers in his speech, though he had no idea how to use them: he would tell you that he rode a horse maybe six years ago when in fact it was last Tuesday, and he would say “I did that yesterday” when in fact he did it when he was three.  Gradually, over the years, his awareness of “years” has gotten sharper and sharper, partly as a result of the Beatles, whose career he tracks year by year, and partly as a result of his ability to create cross-referenced lists: he now keeps a list of all the states I have visited and the years in which I visited them.  Until just this year, he would reference 1998 as “when I was seven,” because he wouldn’t quite accept the notion that he wasn’t seven until September 16, 1998; as far as he could see, he was born in 1991 and was therefore seven in 1998.  But lately he’s come around on this important timekeeping issue, and assents to the proposition that when he went to the National Down Syndrome Society conference in Wisconsin in July 1998 he was still six years old.

About smaller chunks of time, like hours and minutes, he was clueless for a long time.  Again, why shouldn’t he be?  It’s not like hours and minutes come naturally, after all.  But one day three summers ago, after we’d finished our weekend swim and were toweling off in the locker room, Jamie said, “and now we will get lunch and go to the movies and play mini-golf and buy groceries and”—and I told him we couldn’t do all those things.  He asked why.  I said we didn’t have enough time.  He asked why.  I said we only had four hours before dinner, and that we could either (a) have lunch and see a movie or (b) have lunch and do all the other things, but not both.  He asked why.  So I sat him down, took a deep breath, and said, “OK, listen.  You are so clever about sharks, and you know all the states, and you have such a great memory.” “Hmm,” Jamie hmmed in agreement.

“You have learned a lot of things and you try your best in school.”

“Right, exactly,” he replied.

“But you really need to learn about time.  You have some trouble with that.  It’s hard.  But you need to learn how long things take, and you need to learn how much time there is in a day.  Like a movie takes about two hours but mini-golf only takes 30 minutes.  Things like that.  You’re such a great kid.  But you need to work on learning about time now that you’re a big kid.”

Jamie was uncharacteristically quiet for a while, and I was afraid I’d been a bit too harsh.  I’d spoken as if I were his coach: you need to work on your backchecking—you don’t pick up your man in our zone, and you’re hurting the team.  And I certainly didn’t want him to get discouraged about understanding time.

But over time, I discovered that Jamie had taken my admonition to heart.  We got him a digital watch, and he was diligent about wearing it and referring to it eighty or ninety times a day.  By the time he got to middle school, with its unfathomable twenty-three minute intervals and forty-eight minute periods rotating on a six-day schedule (I kid you not), he was all set.

There was only one thing left: intermediate intervals of time, neither hours nor years but weeks and months.  Jamie was now old enough to understand durations of moderate length (as in, “you will turn twelve in three months”), but hadn’t yet integrated them into his lexicon, as he had done with minutes and hours and years.

And then came the tent.  What tent?  Why, the tent I got him for Christmas in 2002. That tent.  You probably didn’t figure me for the tent-getting type.  In fact, if you happened to know that at the time I bought the thing I’d never set up or slept in a tent in my life, you’d probably ask the same question Janet asked as we wheeled it out of Target: what the hell did you do that for? (Which was soon followed by “who’s going to set that up” and “who’s going to sleep in it,” and other related questions.) “I think Jamie will like it,” I said, having, of course, no other plausible reply.

Well, guess what?  Jamie loved it.  We kept it in its box for most of summer 2003, but one morning in July we handed it off to his camp counselors at the local YMCA, and they set it up: because Jamie now had a tent, he could finally go on the annual camping trip from which he’d had to stay back in 2001 and 2002.  Every year, you see, the Y camp goes to Black Moshannon State Park, and all the kids and counselors swim and play games and eat dinner and roast marshmallows and sing songs and do that whole camping-and-campfire thing.  I agreed to meet Jamie at 8 pm that evening and camp out with him for the night; the Y staff had put up everyone’s tents earlier in the afternoon.  I slept on an air mattress, and Jamie slept on a sleeping bag.  It was a Real Adventure.  Jamie’s first night in a tent—and my first night in a tent.  Jamie was 11; I was 41.

It was chilly and rainy, and I don’t think I got more than four hours of sleep, but Jamie was hooked.  From that point on, the tent induced in Jamie the full-body, hunched-over, hand-rubbing glee with which he expresses his love for his very favorite things.  We were persuaded to set up the tent in our backyard a couple of times that August, and we even got a second air mattress for Jamie’s extra added bonus sleeping comfort.  But Nick wasn’t into it (he camped out with Jamie once), and Janet said she couldn’t sleep on the air mattress (she tried it once).  So that left, by the inexorable process of elimination, me.  Appropriately enough, since the tent was my dang idea in the first place.

Jamie and I made a little routine of our backyard camping.  We’d get the air mattresses and bedding ready in the late afternoon, and then after nightfall we’d trek outside with our lanterns and a couple of cans of seltzer and a packet of Capri-Sun and Harry Potter and the Order of the Phoenix.  Jamie would be asleep by ten.  I would be asleep by 10:15 and then awake at 1 and then asleep again at 3 and then awake at 4 and. . . .  And we’d wake up between six and seven and talk about all the animals that were waking up with the dawn, and then we’d pack up and head back to the house, where Jamie could watch morning TV and I could get some sleep.

By mid-September we’d stuffed the tent back in its box, and Jamie was eager to know when we could go camping again.  “Not until the spring,” I said.  “We have to wait until it’s warm at night so we don’t get all cold and shivery while we’re sleeping.”

“March!” Jamie said, knowing full well when spring officially begins.

“Well, not March,” I replied, knowing full well how long a central Pennsylvania winter can hang around.

“OK, April!” Jamie said.

“We’ll see about April.  Sometimes it’s cold in April too.”

“Or maybe May,” Jamie offered.

“May is good, yes,” I said.  “In May it’s usually warm enough to sleep outside at night.” I was thinking of late May, when the nighttime temp usually stays over 50, and (just as important) when I’m not teaching.  But I didn’t say that at the time.

And I didn’t think about the exchange for more than seven months, either—until two years ago this very day, when Jamie woke up and announced, all bright-eyed, “camping tonight!”

“Did you tell him you would set up the tent today?” Janet asked quizzically.

“Uhhh,” I shot back wittily.  “Not that I recall. . . .”

“Yes we would camp outside today,” Jamie insisted.  “Camp outside in May.”

It took me a few moments of searching through the conversational archives, but I got it.  “You ignatz,” I said to Jamie.  “You remember me saying that we could set up the tent in May?”

“Hmm,” Jamie said.

“And you waited all this time until May first?”

“Uh huh,” Jamie said.

“And now you want to go camping tonight?”

“Yes!” Jamie said.

Well, you could say he’d learned a thing or two about time.  And so, on this May 1, for Blogging Against Disablism Day, I offer this little tribute to Jamie:  to his sense of adventure, to his patience, and to his impeccable timing.

Posted by Michael on 05/01 at 09:18 AM
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