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Wednesday, August 23, 2006

Jamie’s trip to Syracuse, part one

A month ago, Jamie and I drove up to Syracuse to meet Rosemary Crossley, the author of Speechless:  Facilitating Communication for People Without Voices and one of the leading practitioners of “facilitated communication.” I mentioned this briefly on the blog at the time; in fact, I tried to bury it in an ABF Friday post about what makes a cult classic “classic.” I even tossed in an endorsement of a Tony Judt essay on the fate of Israel.  Despite all this camouflage, though, my first commenter, Peter Sattler, picked up on the reference to Crossley:

“Jamie and I are off to Syracuse to meet the author of this book and see what she says about his communication skills.”

I parsed and reparsed this sentence for irony, but sadly could find none.  I trust, however, that you are far from being taken in by the magical thinking of that thoroughly discredited technique, Facilitated Communication.  Indeed, insofar as FC is concerned, you could probably find out what Crossley has to say about Jamie’s (or anyone’s) communication skills without his being anywhere near Syracuse.

If I’ve misread or misspoke, I apologize.  May you find what you’re looking for.

A bit later, a second commenter stopped by to explain a bit more about why FC is so controversial:

The method was used with individuals who had severe-profound disabilities. Mostly the problems arose because the participants could not express any recognizable intentions and the question arose, who is choosing the letters the participant or instructor? And there was no way to figure that out!

A third commenter added this link, which lays out the case against FC quite clearly, although it unfortunately tosses in a bit about repressed memory therapy for good measure:

Facilitated Communication (FC) is a technique which allegedly allows communication by those who were previously unable to communicate by speech or signs due to autism, mental retardation, brain damage, or such diseases as cerebral palsy. The technique involves a facilitator who places her hand over that of the patient’s hand, arm or wrist, which is placed on a board or keyboard with letters, words or pictures. The patient is allegedly able to communicate through his or her hand to the hand of the facilitator which then is guided to a letter, word or picture, spelling out words or expressing complete thoughts. Through their facilitators, previously mute patients recite poems, carry on high level intellectual conversations, or simply communicate. Parents are grateful to discover that their child is not hopelessly retarded but is either normal or above normal in intelligence. FC allows their children to demonstrate their intelligence; it provides them with a vehicle heretofore denied them. But is it really their child who is communicating? Most skeptics believe that the only one doing the communication is the facilitator. The American Psychological Association has issued a position paper on FC, stating that “Studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique for individuals with autism or mental retardation” and describing FC as “a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy.”

Jim Easter added, “you certainly do have some of us scratching our heads”; Kristina Chew, the mother of a child with autism, said, “I am curious about what you learn about FC in Syracuse. We have thought more than once about this for Charlie, despite the controversy surrounding it and autistic persons”; and finally I was warned, “Oh, Michael, no, no.  Facilitated Communication has all the characteristics of a hustle.”

So the next morning, before Jamie and I set out for our return trip, I posted the following in the comments section, way way down:

What I discovered yesterday is that he learns very quickly how to use word-recognition software, and that’s a good thing.  And yet, jre (comment 39), Jamie does not, in fact, communicate very well.  He’s quite clever, observant, and thoughtful, but his expressive delays are far more significant than any other aspect of his disability, which means (a) there’s a great deal of iceberg under the water and (b) there’s no harm trying to find out whether we can get any more of that iceberg above the water.  But Chris (comment 47) is right:  FC can stir up more fights than an Israeli invasion of Lebanon.  So I’ll blog about Jamie’s visit with Rosemary Crossley in a future post, possibly late next week.

Note that I said “possibly.”

But those of you who read this blog regularly probably have some idea of how I handle controversial things like the Middle East, the “radical” “left,” and Facilitated Communication: I wander around and think about them for a while, and I get back to them when I get back to them.  (By the bye, my weeklong series on the differences between the democratic left and the “radical” “left” has gotten a number of responses from that quarter.  You’ll recall that I criticized them for, among other things, uncritically supporting Hezbollah and the Iraqi resistance.  In a series of devastating rebuttals, they’ve affirmed their support for Hezbollah and the Iraqi resistance.  Well, that’ll show me!) But at least when it comes to politics and such things, I can draw on about thirty years of more-or-less conscious life and a good deal of reading.  With FC, by contrast, I’m kind of at sea.  So, in this first post of a two-part series, I’ll just spell out my inchoate sense of the controversy.

I share some of the skepticism about FC, for fairly obvious reasons.  The history of people with disabilities is also a history of extraordinary snake-oil “remedies” and “cures” for disability; when Jamie was little, the most pressing controversy in the world of Down syndrome concerned the nootropic drug piracetam, which was claimed to have miraculous effects on the brain functions of children with DS.  Janet and I looked over the assorted claims for piracetam and vitamin therapy and decided that though we’d have none of the piracetam, thank you, Jamie would probably do well with antioxidants, because it seems that the extra 21st chromosome leads to (among other things) an overproduction of free radicals and some messing-up (apologies for the technical term) of the body’s biochemistry on the cellular level.  We noted, for example, that Jamie loves to eat ketchup—on hot dogs, sandwiches, eggs, and by itself—and we imagined that his body liked the lycopene.  Then again, Jamie also loves blue cheese dressing, so go figure.  Anyway, multivitamins aren’t very intrusive.  But we were not going to go so far as to put any odd drugs in his body in the hope of “curing” his disability, and we’re basically leery of everything in general.  There are, indeed, all kinds of creepy people with Better Brain Institutes who claim that their patented Elixi-Lot will cure ADHD, autism, cerebral palsy, pervasive developmental delay, and scrofula.  (What’s “pervasive developmental delay,” you ask?  It basically means “we have no idea what’s going on.")

On the other hand, I am skeptical of some of the FC skeptics as well.  They often speak in the name of Science, and yet when you examine the Science on which they rely, it often turns out to be the Science of education or the Science of psychology.  (When I capitalize Science in this way, you’re supposed to hear it shouted in the stentorian voice from Thomas Dolby’s “She Blinded Me with Science,” and you’re supposed to think of people using the authority of Science as a cover for an array of decidedly non-scientific or soft-scientific claims.  Astrophysics, for example, is a science.  So are biochemistry and paleontology.  Economics and psychology are something else altogether, and when we mere mortals try to point out how much they rely on ordinary human interpretation, we are sometimes told that we should not question Science.) Yes, the American Psychological Association has a position paper on FC, and they’re agin’ it.  Noted.  But I also note that the fields of psychology and psychiatry have a long history of trying to medicalize nonmedical conditions, and their track record with regard to theories of brain function is rather spotty.  For example, on balance, FC seems to me far less controversial or harmful than lobotomy or electroshock therapy—just to pick two very widespread practices embraced by the advocates of Science in the fairly recent past.  So the very fervor with which FC is denounced, in some quarters, sets off my spider sense.  When I run into FC debates I always feel like I’ve blundered into the wrong room—as if I’ve wandered into a seminar full of psychiatrists while wearing an “I heart Thomas Szasz” button on my lapel, or as if I’ve wandered into a seminar full of anti-psychiatrists while wearing a “Thomas Szasz is a fraud” button.  (I have never done either.  I don’t know what to make of Thomas Szasz.  So don’t even go there, unless you want to bear out my “wrong room” theory.)

All of which is to say that I went to Syracuse with an open mind.  I don’t think Rosemary Crossley and Chris Borthwick are falsifying their compelling accounts of the people with whom they’ve worked; I think Doug Biklen’s work is for real; I do think that much of the nondisabled world is far too quick to write off the communicative capacities of people with neurophysical or intellectual disabilities, and that this can have tragic consequences, particularly when we’re dealing with people who have suffered traumatic brain injury; and yet I didn’t expect that Jamie would produce the Gettysburg Address after an hour with Rosemary, either.  I merely wanted to see what he’d do with facilitation, and whether it would be worth it to buy him some word-recognition software to help him communicate via keyboard. 

I put up my blog post at 1 am that Friday morning, then got a bit of sleep before striking out at 8:30 for what I thought would be four hours’ drive to Syracuse.  Our appointment with Rosemary was scheduled for 1:30.  That drive turned out to be at once epic and comic: in Pennsylvania we were stuck behind construction vehicles.  In southern New York we were diverted onto tiny two-lane roads, and then treated to the mess of rubble and wire and traffic cones that is route 17.  Abandoning 17 for 13 through Ithaca, we waited along with a few dozen other cars while a maintenance truck repainted the white line on the shoulder.  Then we waited behind a municipal bus all the way to Dryden.  Then in Cortland, as we tried to hook up with Interstate 81, we found ourselves, I swear to Ba’al, behind the weaving Malibu from Repo Man, and even as we made our way up the onramp at last, we were stopped by not one, but two cars slowing down and pulling off to the side of the ramp.  By that point it was 1 pm, and we were 30 miles from Syracuse.

We showed up at 1:33.  Don’t ask how.

Two other peripheral things about our trip: I had booked a discount room via Priceline at the Marx Hotel and Conference Center, even though I was not convinced that the hotel would be sufficiently dialectical.  Imagine my surprise, then, when it turned out that the Marx Hotel was the very same hotel at which my Greater New York City Ice Hockey League All-Stars had stayed in 1972, when we played in the statewide tournament and lost in the finals to Clinton, 3-2.  Talk about the lattice of coincidence!  And it was the very same hotel in which I’d stayed two years later with another hockey team after the statewide tournament, even though the tournament that year was way up in the frozen tundra of Potsdam (which I’ll be visiting this November!).  But on the way back along I-90, our team bus had hit an icy patch in a blizzard, and we crashed into the median strip ten miles west of Syracuse.  We were being blown all over the road, and our crafty driver managed to avoid going right off an overpass and plunging into a stream; instead he swung back and crashed us, relatively safely, into the grass of the strip.  But one of the parents broke an arm nonetheless, and a couple of kids were bruised and cut.  We made local news in Syracuse, and they put us up at . . . the Marx Hotel, which was a Holiday Inn at the time.

Now, how did I remember that this was the same hotel?  Well, I have a pretty good memory, as you might have gathered by now.  But more important, this hotel is a 16-sided thing twenty stories high.  Can you imagine how a bunch of prepubescent hockey players behaved in a hotel with circular corridors and endless possibilities for chases on the stairs?  Let’s just say you’d remember it too.

Anyway, they’ve redone the hotel completely in the intervening 30 years, and renamed it after Karl Marx.  The appointments are very nice, and the Grundrisse Breakfast Special can’t be beat.  I recommend the place to anyone traveling in the area and looking for an alternative to the string of German Idealist “Geistesgeschichte” hotels that dot upstate New York.

Peripheral thing number two: that night Jamie and I went to the mall to see Monster House.  Reasonably entertaining for the first half, particularly if you (like me) lived across from a Monster House when you were a kid.  (Perhaps I’ll write about that one of these days, too.) But then it turns out that the Monster House is a Monster House because it’s got the spirit of a real monster in it—the former Fat Lady from a freak show, a vicious and bitter woman who was accidentally buried in the foundation by her husband, and whose evil spirit now wreaks its revenge on neighborhood kids who. . . .

Excuse me? Can I ask just who the hell thought that was a good story idea?

Oh, you want to know how the FC session went.  Stay tuned til tomorrow!

Posted by Michael on 08/23 at 09:55 AM
Jamie • (36) Comments • (0) Trackbacks • Permalink
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