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Thursday, August 24, 2006

Jamie’s trip to Syracuse, part two

So here’s what happened when Jamie and I sat down with Rosemary and her computer keyboard.  First we etched a pentangle into the ground, then we set it on fire. . . .

No, not really!  I am only kidding about the pentangle.  And the fire.  But Jamie and I did sit down.

After we’d done introductions and talked a bit about sharks and Australia and other things that Jamie’s familiar with, Rosemary showed Jamie how the word-recognition software works.  Once he typed a letter, the screen offered him six likely choices; if his word was among them, he would press the number for the word, and if it wasn’t, he would go on and type the next letter until his word appeared.  And so on.  It took him a few minutes to get the hang of this.  The software was the magic kind that can talk, so each time Jamie completed a word, he was able to hear it spoken by the computer.

And then things got interesting.

Rosemary showed Jamie a picture and asked him to tell a story about it.  “Oboy,” I thought to myself.  “This is precisely what Jamie can’t do.” Now, as exceptionally dedicated readers of this blog may know, I have misunderestimated Jamie before, so I try to be cautious before I think thoughts like “this is something he can’t do.” But I do know that narrative is something about which he has often expressed disappointment and frustration.  He lives with people who tell stories fluently, one of whom often tells stories about him, and he knows he doesn’t have that kind of fluency.  Accordingly, when you ask him to tell about X or Y, he will turn to Nick or to Janet or to me and say, “you tell.” Obviously, this strategy doesn’t work when he’s being asked about experiences only he knows about, and I’ve spoken to him about the Other Minds Problem, just to see if he understands that other people don’t know the things he knows and don’t have the memories he has.  (More specifically: I’ve asked him the classic Other Minds Problem question of what would happen if you showed someone a rabbit under a hat, then asked them to leave the room, then switched the rabbit for a mouse, then asked them to come back in.  Would they believe that a rabbit was under the hat, or a mouse?  At first Jamie said “mouse,” so I repeated the question more carefully and explained that the person who left the room knows nothing about the switch, whereupon he said “rabbit.” Results: inconclusive!) “And that’s why we’d love to hear your stories,” I always say.  “Because we’d love to hear what you think about everything.”

The picture showed a kangaroo, a joey, and a man on a horse.  Jamie began to type.  Rosemary guided his right elbow; this is one of the things that makes FC controversial, because it introduces the ouija-board question.  But from what I could see, she wasn’t leading him to pick one letter or another.  She did alert him to when selections of words became available on the screen, and she made sure that his elbow was level with his forearm and that his index finger was straight.  In other words, she was facilitating.  But she wasn’t pushing his arm all over the keyboard.

Jamie, with Rosemary’s help, wrote:

The horse is driving a Joey away from its mother.

“Hmmmm,” I hmmmed.  The sentence was plausible enough, but I questioned the word “driving.” I’d never heard Jamie use the word before, and yet I knew it wasn’t out of his reach.

“Very good, Jamie,” Rosemary said, and I thought they’d move on to another picture.  Instead, Rosemary proceeded to ask Jamie why the horse was driving the joey away from its mother.  Back to the keyboard:

The horse is driving a Joey away from its mother the man wanted the Joey for a pet.

Well, surely you recall that passage from E. M. Forster’s Aspects of the Novel:  “‘The king died and then the queen died’ is a story,” Forster writes.  “‘The king died and then the queen died of grief’ is a plot.” So Jamie had already progressed to plot, leaving out the “because” between “mother” and “the man.” (And “Joey” was capitalized twice because the word-recognition program simply repeated the word once Jamie hit “j,” on the theory that a user would be likely to use the same j-word twice.)

Once again, Rosemary praised Jamie—but then she said, “ah, but now I have a question, Jamie.” Jamie turned his full attention to her.  “Is it right for the man to do this?”

“He understands the concept of ‘fair,’” I interjected.  Thanks once again to Harry Potter and the many miscarriages of justice depicted therein, from Sirius Black’s conviction to Dolores Umbridge’s brutal punishments of Harry, Jamie also knows the concept of “innocence.” I’ve also glossed the line, “he’s crying out that he was framed,” from Dylan’s “I Shall Be Released,” by reference to Sirius Black.  OK, so it’s not Rawls’ Theory of Justice.  Give me a break.  Harry Potter has the distinct advantage of being narrative.

“Is it fair for the man to drive the joey away from its mother?” asked Rosemary.

Jamie, with her guidance, went back to the keyboard:

I think we should leave wild animals in the wild.

“Oh, very good, very good.  Now that raises a very good question, Jamie,” Rosemary said.  “What do you think about zoos?  Is it all right to capture animals and put them in the zoo?”

I sat on my hands for this one.  As you know, Jamie has been to zoos all over the Western world.  He always pays attention during the nature shows, and he understands that some animals are endangered by human predators and by environmental change.  He is so down with the argument that sharks have more to fear from us than we do from them, and he knows which species are not harmful to humans.  And he knows how zoos get their animals and care for them.  So I kept as quiet as a rabbit or a mouse.  And here’s what he produced:

Guess you are right.  The think ing thing to do is to keep just the minimum number of animals in zoos so we find out about them without having to chase them.

Well, now. The think ing thing to do?  The phrase made me wonder whether, in fact, Jamie had such a sentence fully-formed in mentalese before he began typing, or whether he’d made it up (again, with Rosemary at his elbow) on the fly, as he chose among his options afforded him by the computer.  It certainly didn’t sound like the Jamie I knew, but then, why would it?  And then just the minimum number of animals.  My spider sense went off at that one, too.  It sounded as if Jamie had an entire position paper on animal rights and species preservation at his fingertips, just waiting for FC to come along and dig it out.

I asked him about this sentence later, after the session was over.  “What were you saying about animals in zoos?”

“They would be safe,” Jamie replied.  “They would survive.”

OK, so he was certainly think ing something along those lines!  These two sentences alone were more than I’d ever heard him say on the subject (and that was his first conversational use of “survive,” so far as I know), so Rosemary had obviously gotten him going, and he obviously had something to say.  I pressed on.  “But you said we should just keep the ‘minimum number’ in zoos.  Do you know what ‘minimum’ means?”

“Tell me,” Jamie said—though he says this even when he knows the answer.

“It means ‘the least amount.’ Do you want to keep just the least amount of animals in zoos?”

“We could have lots of animals in zoos,” Jamie replied.  “And take care of them.”

Very well, so it’s possible that he meant we should keep just the maximum number in zoos.  So maybe Rosemary led him on a bit—or maybe he simply chose one of the available words from the program, without being quite sure what it meant.

I think the same thing happened with the next picture, which showed a small girl, a big ape, and the Empire State Building.  Jamie’s response to this picture was:

The little girl really got scared when doing her school excursion they went to see king kong.

Again, the thing that jumps out is “excursion.” Jamie knows the phrases “school trip” and “field trip,” but “excursion” didn’t sound like it was in Jamie’s repertoire.  But then again, maybe he was just choosing “excursion” once it popped up on the screen along with words like “exercise” and “experiment.” “Doing her school excursion” ain’t exactly kosher in terms of usage, after all, and Jamie’s punctuation and capitalization were a bit off too.  So it wasn’t as if he’d produced the Gettysburg Address.  But Jamie is, in fact, fascinated with King Kong (especially the scene involving what we now call “the islanders,” Scott Eric Kaufmann, white courtesy phone!), and the bulk of the sentence is altogether plausible. 

Jamie and Rosemary produced three more sentences.  Two were addressed directly to Rosemary:

You get people with down syndrome typing how can I type better than I do.

I think you know the right way to type.

Possibly a bit suspicious, sure, insofar as they serve as advertisements for the process under way, but once again, I believe they’re within Jamie’s range.  When he was in sixth grade, he had to type sentences about his spelling words, and though he liked it, the amount of time required for his hunting-and-pecking always discouraged him.  With this program, by contrast, he was typing one or two letters, a number, and shazam! Words appeared on the screen and were magically spoken aloud.  And the more Jamie typed, the faster and more fluent he got.  I was sure of this much: he was really enjoying himself.

And then, just as the hour was ending, Rosemary asked him if there was anything he’d like to say about current affairs.  The answer:

Israel is not very happy with Lebanon and they have been shelling Beirut.

I didn’t believe that one for a moment. 

Now, I might have been underestimating Jamie again, but still, this one looked fishy to me.  He’d never uttered a word like this in his life.  I mentioned it to Janet when I called her that night, and she said that maybe, just maybe he and his teachers had said something about Israel and Lebanon in summer school.  But I’d just grilled him about that sentence after the session was over—lightly, mind you, with a splash of olive oil and butter.  In response, Jamie said something about war in Iraq, and asked me to tell about Israel.  Jamie knows about war in Iraq, and he knows that US soldiers are there, even if, like most of the American public, he isn’t entirely sure why.  Jamie also knows where Israel and Lebanon are; he’s remarkably good at geography (way better than most of his fellow citizens) and knows most of the Middle East.  But “shelling”?  “shelling Beirut”?  Rosemary, I thought, had done a bit of overreaching there. Any FC skeptics watching that sentence appear would surely remain FC skeptics.

But then another thought occurred to me: what if that sentence had been wholly Rosemary’s, and she was simply showing Jamie how to produce such sentences with the help of the word-recognition program?  Then it wouldn’t be a question of whether Jamie had had such a mental sentence fully formed in his head, waiting to be unlocked by FC; it would be a question of whether Jamie could be induced to see himself as a producer of such a sentence.  In other words, even in the worst-case scenario, maybe Rosemary wasn’t ventriloquizing Jamie so much as showing him what the program—and what he—could do.

It was a thought.  I juggled it with a bunch of other thoughts as Jamie and I drove around the campus area, looking for Indian food and movies and our hotel.  Among those other thoughts was the reflection that whatever the merits of FC, Rosemary had worked with Jamie generously and solicitously, and had asked him some great questions.

Once we checked in at the Anton Pannekoek Hotel and Council Communist Center, I asked Jamie again about Israel, Lebanon, and animals in zoos.  He said, good-naturedly, “Michael, you asked me that already.” True enough, so I simply asked him if he’d had a good time and if he’d liked Rosemary.  To this I received two very enthusiastic yeses.

And then the first of two curious things happened.  We tried to open the door to our room, but the keycard wouldn’t work.  Frustrated (we were tired, and we’d waited forever for an elevator), I informed Jamie that we would have to return to the lobby for another key.  He started to fuss and complain, which was normal enough, and then, surprisingly, he asked, “what if they don’t let us back in?”

Quoi? I’d expected him to be a bit fussy, since he was weary, but I hadn’t expected this.

“You mean you’re worried that they won’t give another key?”

“Yes,” Jamie said.  “What if they don’t give us any key?”

I assured him that that wouldn’t happen, but I noted that he’d been a bit more articulate about his worries than he usually is. 

Still, it wasn’t a major breakthrough or anything.  He just seemed a bit more confident in expressing himself, that’s all.  So I put that thought next to all the others.

And then a few hours later, at dinner, he started playing his “animal hangman” game with me.  In this game, he draws X number of blank spaces (lately, he’s gotten to the point at which he can spell the words to himself mentally, visualize them, and draw the appropriate number of spaces—this is all quite new and exciting), and I have to guess letters, and so forth.  Mind you, he doesn’t go for things like “cat” and “pig”; he prefers animals like “Port Jackson shark” and “bull elephant seal.” Real challenges, both for him and for me. Suddenly, he interrupted the game to ask me a question.

“Michael,” he said, “how do you spell ‘composition’?”

Did I hear that right? “Uh,” I stammered.  “Here, let me write it out.” As I did, Jamie stopped me.  “No, not composition,” he said. ”Competition.”

“Oh!  Sorry.” I wrote out “competition.”

“Thank you,” Jamie said.  “How do you spell ‘delusion’?”

At this I practically spat up my saag paneer.  He knows the word “delusional,” as it happens, because of Ferdinand the Duck’s misguided and futile effort to persuade Babe the Pig not to pursue the animals captured in the raid in Babe 2: Pig in the City (a brilliant and vastly underrated film):

Pig, you are unraveling!  A, they are long gone; B, they were not nice people; C is for kamikaze, and D is for delusional, which is what you are in the head.  You’re just a little pig in the big city.  What can you do?  What can anybody do? Why even try?

It’s a great speech.  Jamie and I rehearse it all the time.  But he’d never, never asked me how to spell “delusion” before.  Clearly, he was thinking hard about his session with Rosemary that afternoon, and clearly, in thinking of words like “competition” and “delusion,” he was thinking about words he’d feel more confident about writing if only he knew how to spell them.

Well, that decided things for me.  I asked him if he’d like to get “the computer game” that Rosemary used, the Intellitalk 3, and he gave me a big thumbs up.  And then we finished dinner, and off we went to see Monster House.

Now, I know this isn’t a definitive endorsement of Facilitated Communication.  But it is a report that when Jamie worked with a word-recognition program and some friendly help from Rosemary, he was able to try out some unfamiliar words and then to think about how to write some complicated familiar ones.  That, in turn, helped him to form more complex sentences on the screen than he can manage in daily speech.  I’m sure that if Jamie didn’t have to spend so much time and energy worrying about how to spell the words he knows, he’d type and communicate more fluently than he does now.  And why would I be so concerned about his typing, when his speech is reasonably intelligible and coherent?  Because Jamie, unfortunately, not only has a little trouble vocalizing his words; he’s also burdened with laryngomalacia and oral-motor deficits and a father who speaks too quickly.  The end result is that he’s often quite hard to understand.  Thank goodness he has so much patience with us.

My tentative conclusion is this.  For kids with expressive speech delays, there’s really nothing to be lost by checking out FC and seeing what kind of assistive technology might actually be of some assistance.  The major controversies over FC are, I’m both sorry and relieved to say, largely irrelevant to Jamie:  he can speak on his own; he says plenty of smart and insightful and surprising things even if he telescopes them into a few condensed words; he’s let us know, in various ways, that he thinks seriously about life and death (particularly the deaths of loved ones) and, lately, the Middle East: he wants to know what’s going on over there, and whether there could be bombs and rockets in Pennsylvania as well.  Finally, of course, there will be no question of whether Janet or I will be guiding his fingers to the keys, so the ouija-board question—of whether the facilitator or the facilitatee is really doing the communicating—is moot.

I still don’t know what to say about FC with regard to people with severe and profound disabilities, or people seemingly incapable of communicating at all.  But I still believe that too many people with disabilities are misdiagnosed as nonfunctioning and noncommunicative, and that, given our lousy track record of such misdiagnoses, we should place the burden of proof on anyone who declares that person X is incapable of communicating, and we should offer the benefit of the doubt (though not a free pass, mind you) to people who are willing to think otherwise.

And I’m definitely getting Jamie an Intellitalk 3.

Posted by Michael on 08/24 at 08:45 AM
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