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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 east 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 on 08/23 at 09:55 AM
  1. I was raised in Syracuse.  Next time you’re there, try a coney (a white, pork-and-veal based hot dog) at Heid’s or check out the Dinosaur Barbeque.  And bring home some salt potatoes.

    Posted by  on  08/23  at  11:44 AM
  2. It’s like a ouija board, but with less concensus.

    Posted by Central Content Publisher  on  08/23  at  12:18 PM
  3. I prefer the Gramsci Hotel up the road. Though they vigorously deny it, the staff there creates a much more warm, dare I say, human-centered atmosphere than what one finds at the Marx Hotel - though all their “See Syracuse!” brochures are tad on the didactic side.

    Posted by Theron  on  08/23  at  12:21 PM
  4. Tease.

    Posted by  on  08/23  at  12:40 PM
  5. … 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.

    Oh come on now, have you read the literature? Psychological studies and “experiments” sometimes get effect sizes in the high single to low double digits! This is objectively measured stuff. If the conclusions seem a bit “soft,” it’s because the yardsticks are a little iffy, that’s all.

    The history of people with disabilities is also a history of extraordinary snake-oil “remedies” and “cures” for disability;

    This is where the FC train gets a little tricky to board. They sometimes use some pretty circular logic, as in FC does not work in controlled settings, and that’s why studies in controlled settings do not support FC. Most, but not all, of the objective studies fail to provide evidence for FC proponents’ claims. If it works for some people in certain situations, that’s great. The danger, in my experience of working with parents of children with disabilities, comes with those few parents who are in denial regarding the severity of their child’s disability. Those parents are extremely susceptible to snake-oil sales, and FC would be extremely easy for a snake-oil salesman to peddle.

    Posted by  on  08/23  at  01:02 PM
  6. Oh, come on! Enough with the postus interruptus. While your travelogue is diverting, we want the meat and we want it today.

    Monster House did indeed have a creepy premise, but my six-year-old son enjoyed it. Kid and parents alike made it through the night after without nightmares, amazingly.

    captcha: his, as in “his nibs is a big ol’ blogging tease”

    Posted by Orange  on  08/23  at  01:03 PM
  7. It’s like a ouija board, but with less concensus.

    Actually, with more consensus, just not in the direction hoped for.

    Posted by  on  08/23  at  01:31 PM
  8. Grrr!
    First, we have the tantalizing exposition (FC: bogus or no?). After the mounting tension of the car chase sequence (will they make it on time? will Michael’s head explode?) and the flashbacks of the Marx hotel (this isn’t a Stephen King story, is it?), you leave us with a dangling synopsis of...Monster House! The descent into the underworld! A much better cliffhanger than Pirates II.

    Posted by  on  08/23  at  01:33 PM
  9. First, we have the tantalizing exposition (FC: bogus or no?)

    Well, we still have to figure that out!  I don’t know about you, but the suspense is killing me.

    Posted by Michael  on  08/23  at  02:38 PM
  10. You’re a good person, Michael.

    Love,

    Hanna

    Posted by Hanna  on  08/23  at  02:39 PM
  11. Well, thank you, Hanna, but just wait for part two!

    Posted by Michael  on  08/23  at  04:52 PM
  12. Cocktails in the Engels Lounge, dining and dancing to the music of Leon and the Bloc of Rightists…

    Posted by  on  08/23  at  04:53 PM
  13. Just tell us if you wore an onion on your belt during any of these visits to Syracuse.

    Posted by  on  08/23  at  04:53 PM
  14. Drrr. The Marx hotel is named after Zeppo, not Karl. Who doesn’t know that.

    Posted by Ophelia Benson  on  08/23  at  05:11 PM
  15. Well, Michael, a few years ago I took a look at the literature on ADHD, right down to the genes and the chemicals, the hardest of the Science. These folks have clues upon clues about what’s going on, but no way to put them together into a compelling story. I’m reasonably convinced that some of it is “real” some not, and how to tease the two apart is not in the least bit obvious. It is, however, obvious that THEY don’t know how to do the teasing either. Some of them realize that, some don’t and most just soldier on regardless of whatever realizations they entertain in private moments of weakness hope and doubt.

    There’s a lot of that going around these days.

    Jamie’s lucky he’s got you trying to negotiate through this murk.

    captcha: justice

    Posted by Bill Benzon  on  08/23  at  05:24 PM
  16. I would never stay in a hotel that would accept me as a guest. Now, go cut some onions and make your ‘eyes water.’

    Posted by  on  08/23  at  05:48 PM
  17. Just tell us if you wore an onion on your belt during any of these visits to Syracuse.

    This is a reference to Marx’s 1857 Introduction to A Contribution to the Critique of Political Economy, right?  The “onion” passage in the account of the producer’s partial and incomplete view of the system of production?

    Posted by Michael  on  08/23  at  05:58 PM
  18. You sure it wasn’t the Mars Hotel?  The place you stay when your train pulls in at Terrapin Station?

    Posted by  on  08/23  at  06:11 PM
  19. I’m not sure I want to get into an interpretive struggle with the Paterno Family Professor in Literature at Penn State University but I’m not sure I agree with Michael’s take on “Monster House.”

    I thought the poor woman had been driven to her behavior by the cruelty of the circus owner and the children who taunted her in the sideshow while they pelted her with rocks and garbage.  So her behavior was explained by the atrocious behavior of the children who, lets face it, were pretty contemptable at the sideshow.

    I realize this leaves us with DuBois’s choice of feeling Contempt or Pity for her, but still…

    Posted by  on  08/23  at  06:21 PM
  20. pointless factoid: The voice in Thomas Dolby’s ‘She Blinded Me With Science’ was famous English TV scientist Magnus Pyke. He waved his arms around crazily and had that overexuberant overenunciated way of communicating which almost singlehandedly perpetuated the mad (or at least eccentric) scientist stereotype.
    http://en.wikipedia.org/wiki/Magnus_Pyke

    Posted by saltydog  on  08/23  at  07:58 PM
  21. Yes, those kids were truly terrible to her, jpj.  That’s a fair point.  And her tiny (and well-meaning) husband wanted to Take Her Away from All That, and build her a house where kids couldn’t taunt her anymore.  But they do, and she falls into the foundation . . . and then, once the house becomes infused with her spirit, he spends the rest of his life maniacally chasing the kids away so that she can rest in peace.

    So my question is this:  do we really have to go back to the era of the freak show to provide a monster for the Monster House?  And does the stigma suffered by the Fat Lady have to produce a thirst for revenge for decades on end?  Why can’t the monster house’s crabby old man be just a crabby old man, instead of a milquetoast who (as it turns out) needs to be liberated from his wife’s voracious and vengeful spirit?  And why can’t the monster house be just a really weird, inexplicably supernatural monster house?  The entire “the Evil Fat Lady is going to eat you and your basketball too” subtext is just gratuitous, even if you try to read the dead wife sympathetically.

    Posted by Michael  on  08/23  at  08:01 PM
  22. And never, never drink the tea at the Hotel Proudhon.  They think that proper tea is theft.

    Posted by Chris B  on  08/23  at  08:17 PM
  23. 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

    I just got a bunch of looks from my co-workers because I burst out laughing at that.  Put me in mind of the great Monty Python sketch where Marx, Lenin, Mao and Che answer questions about English football so they can win a non-materialistic lounge suite.

    Uh oh.....DEATH is my submit word.  Damn......

    Posted by  on  08/23  at  08:20 PM
  24. “This is a reference to Marx’s 1857 Introduction to A Contribution to the Critique of Political Economy, right?” The Grampa Simpson translation.

    Posted by  on  08/23  at  08:25 PM
  25. And did you try the hotel’s famous onion soup with raisin sauce?

    Posted by Chris B  on  08/23  at  08:52 PM
  26. Damn you, Berube, just when I get settled in with my wife’s folks in Japan and extricate myself from the 5 4-year-old-and-under bundles of joy here (including 3 nephews, 2 of whom are old enough to enact their Ultraman fantasies on their uncle every morning at 6 am, and 7 am, and 8 am, and...) long enough to submit an abstract and begin catching up on a month’s worth of my favorite blogs,you have to go and harp on the joys of driving on Route 17 and mention losing a hockey game in my hometown when I was 3.  You’re making me feel like my two-year-old daughter who, for for two straight weeks after we got here, cried for “Dunkirt” and the merry-go-round in the Boulevard Mall in Buffalo before every nap- and bed-time.  Hmm, better go see if the video store here has that “Hail, Freedonia” Marx Bros. movie....  You just stop with the Southern Tier and Central New York stuff, ok?

    Posted by The Constructivist  on  08/23  at  09:06 PM
  27. That would be Duck Soup.
    “That could get you ten years in Leavenworth, or eleven years in Twelveworth.”

    Posted by  on  08/23  at  09:47 PM
  28. My suspicion is, usually it’s the facilitator’s thoughts that are being communicated, but not always. I did read about a few autistic people who started out using FC and were gradually able to communicate on their own.

    As for the skeptics: They of all people should be aware of logical fallacies, and blanket dismissal of FC seems like an either/or fallacy to me.

    Posted by  on  08/23  at  09:58 PM
  29. MB said,
    “The history of people with disabilities is also a history of extraordinary snake-oil “remedies” and “cures” for disability”

    FWIW I had a roommate in university who claimed to have Down’s Syndrome and underwent some kind of folic or folinic acid treatment (can’t remember which, if there is even a difference) when she was very young.  While she was a bit naive and gullible to the extreme she also had the most genuinely sweet disposition I’ve ever met.  I can’t imagine why anyone, let alone her in particular, would lie a)about having Down’s or b)about getting said treatment.  She was evidently smart enough to be taking Canadian University-level science courses.

    Furthermore from my admittedly untrained eye she had what I can only describe as the anatomical characteristics of one with down’s save for her face, only muted.  She didn’t claim to have any side-effects from the treatment, and aside from her inability to get some jokes right away she was a totally “normal”, early twenties woman.

    Like I said, for what it’s worth.

    Posted by  on  08/23  at  11:15 PM
  30. Michael:

    I dunno why the crazy old man couldn’t have been a crazy old man and the monster house couldn’t have been just a monster house.  I think moviemakers forget that the world of kids is full of inexplicable things that remain inexplicable.

    In the latest remake of “Charlie and the Chocolate Factory,” which was supposed to be more faithful to the book, they muck is up by giving Willie Wonka a dentist father who never really talks to the boy and Willie is thus obsessed with candy.  Whereas in the book, Willie is a crazed candymaker; end of motivation. 

    The world is full of the inexplicable, shouldn’t our stories be so too?

    Posted by  on  08/24  at  09:56 AM
  31. 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.

    You can’t trust any of them.  I stick to tried-and-true remedies.  I always keep the King of France around, just in case anyone in the family gets scrofula.  French monarchs aren’t easy to find, but the French haven’t been using them since 1848, so it’s a pretty soft market.

    Posted by  on  08/24  at  10:52 AM
  32. In the latest remake of “Charlie and the Chocolate Factory,” which was supposed to be more faithful to the book, they muck is up by giving Willie Wonka a dentist father who never really talks to the boy and Willie is thus obsessed with candy.

    Oh, good grief.  This is just as bad as the maudlin and involved back story they provided for the damn Grinch.  What is wrong with these people?  Is it the result of decades of actors asking “what’s my motivation”?

    Posted by Michael  on  08/24  at  11:05 AM
  33. Roald Dahl must have done handflips in his grave over Tim Burton’s reworking of Chocolate Factory. Burton’s next project, in keeping with the foodstuffs motif, is Sondheim’s Sweeney Todd.

    BTW, Michael, I’m a Syracuse U. graduate and am glad you and your son had a good experience there. (And as you probably already know, much of SLAP SHOT was filmed at the War Memorial just a stone’s throw from the Marx Hotel)

    Posted by  on  08/24  at  04:58 PM
  34. I recently found that electroshock therapy is still used. I was unpleasantly surprised.

    Decades ago my brother supposedly heard a talk by a mentally-unimpaired Downs syndrome college student. Apparently there are many forms.

    Posted by John Emerson  on  08/24  at  05:28 PM
  35. There’s something called mosaic Down syndrome, where some cells have the extra chromosome but some don’t. People with MDS are sometimes of normal or near-normal intelligence.

    Posted by  on  08/24  at  06:59 PM
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