Friday, 22 April 2011
Here is an old LJ entry I wrote after attending the New England TASH conference in 2008. I suppose that makes sense and is fitting, since it is probably when one could say I really got into this whole advocacy thing in earnest, and being the first time I really saw facilitated communication in action, certainly goes along with the communication theme. Remember it was written two years ago; a few things have since changed, and it's interesting to see where we've been, I guess.
So there I was at the TASH New England conference a month ago tomorrow, attending the second of the five or six workshops I was to attend that day. This session was on facilitated communication, or FC for short, which is a topic that greatly interests me, especially given what I do.
I didn't know that much about FC, going in. I mean I'd read about it, heard about it - chiefly, the controversy surrounding it - and I'd seen people doing it, but this, I sensed, was somehow different.
I didn't know how right I was.
One of the presenters was a ten year old boy, and another was a good friend of mine; the third was a man I did not know but Karen did. As the presentation opened, Matthew, the ten year old, opened the floor to the audience for questions, after the panelists had introduced themselves, via their communication boards.
It worked like this: they, with or without the help of a facilitator, typed into a communication device, all variants on a standard keyboard. Sometimes it took several minutes for a full sentence to be produced, at which point it was fed through a voice synthesizer, which "read" the answer aloud to us.
And what was the outward appearance of the people demonstrating FC? Well, they looked severely autistic, actually. They rocked, they hand-flapped, they made vocalizations as they typed that were not speech. They looked, in other words, like exactly the sort of people I was once told couldn't possibly be capable of intelligent thought or even emotion, much less share it with the rest of us!
I sat there in the back of the room, having arrived a few minutes late, trying to think of something intelligent to ask. What did I know about FC? What did I want to know? What was important, here?
Presently, a woman also in the back of the room raised her hand, and when she was asked for her question, she asked, "What do you like to do on the weekends?"
There was a pause, and after a few moments of furious typing, came Matthew's reply. "Everyone always wants to ask the simple questions," he said. "Why don't you ask a real question?"
I liked him immediately. I remembered, perhaps oddly, a time when my dad and I had passed a person with a developmental disability on the street. I was a teenager, and it must have been in Providence or Cranston. He had told me that the mentally handicapped, as they were called back then (at best - I don't think the term "developmentally disabled" existed back then, and I was years away from diagnosis, and in any event, my father always insisted there was no way I was one of "those people") were "out of touch with reality," and several other things, all indicative of his view that there was no hope for them, no future; certainly, they weren't capable of much more than sitting around talking to themselves, or the traffic, or pigeons.
(It was not only my father who conveyed this attitude to me, it should be noted. Should he stumble across this, I don't want him to feel singled out or criticized unfairly; it was, as they say, the times, conventional wisdom, what he and they (thought they) knew, etc. I cant really point to other specific individuals - teachers, I'm sure, therapists, etc. - there was just this pervasive attitude of, you don't want to be one of "those people". Look at "those people"; how miserable their lives are! Aren't you glad you're not like them, not autistic like they told us you were as a baby? Of course, Asperger's wasn't a diagnosis then. Oh, my - if only they'd known. On balance, perhaps it's better that they didn't. But I digress. Severely.)
I'd looked at the person he'd indicated. He looked somehow calm, at peace; I told him that maybe he knew something we didn't, and that was why he smiled. What I meant was that perhaps there was more going on in his head than was outwardly apparent.
"If only there was a way to access that," I thought. "If only they could express their thoughts in a way that we could understand. Imagine the possibilities!"
My dad, of course, dismissed this out of hand. I couldn't quite shake it, though.
Back at TASH, someone had finally produced a sensible question; Mathew's reply snapping me out of my reverie. "What do I want to do when I grow up? Well, I plan to go to law school and eventually become a legislator, so we will finally have someone in office who has a clue." This was met with applause.
I thought about what I had been told about FC. How it was wonderful in theory, but there had been instances where the facilitators had been thought to be using the FC for their own agendas, guiding if not outright putting words into the users' fingers, much as it is thought people may subconsciously or not guide the pointer on a ouija board.
I thought of Amanda Baggs, who has certainly used FC to excellent effect, but has had to show people again and again that those are her words, that she is producing her own content, to use web terminology. When I first stumbled upon her, several years ago, I had to admit to being kind of awed; I had never seen FC in action before.
At the group home across the street from my apartment, there were several people who did not speak. I had been going over to visit for about 7 years at that point, and I was still driven to try to find a way in which they could communicate with more than the several staff members that worked for them and who knew their language. I talked to the staff about this but until recently I always felt I was being humored, at best.
Things began to change around 2003, perhaps. People started asking real questions, finally. I was asked to sit on several committees and while perhaps reluctant at first (the reasons for which are a bit too long to go into here; no need to make this longer than it already will be), I did. People were asking me for my advice and input into these things. Of course I didn't see FC being used seriously until about a year or so ago, but at least people seemed more open to, ah, extreme possibility.
And extreme it still seemed to be within the agency at that time. There may be things I do not know, of course. But now, FC seems to be coming to the fore again, and I am convinced, more than ever, that it needs to be one of the first things people look to, for more than just those people who seem "higher functioning," or the higher functioning of the low-end scale, whatever that means.
"What are your interests, aside from advocacy?" someone asked.
Matthew replied, "I love history and decapitation."
I smiled. I had to meet this kid. After the session was over, I got up and walked to the front of the room, saying hello to my friend and her mother, and turning towards a woman who introduced herself as the president of the New England chapter of TASH. After exchanging pleasantries, I asked her if she could please introduce me to Matthew. "Of course," she replied, beckoning him over. "Matthew, I'd like you to meet Emily," she said.
With no hesitation he walked right up to me and gave me a hug, smiling. I just about melted. I don't know any other way to describe it. To think that this obviously intelligent boy was going to face so many hurdles, have to prove himself time and again - no. I had seen his intellect and it suddenly seemed of absolute importance that the rest of the world see it, too. He needed to be afforded the respect and opportunities available to anyone without a disability; obviously, he was smarter than your average ten year old.
His father walked over and introduced himself, and I spoke with him as we headed downstairs for lunch. He told me that Matthew had only recently, with FC, begun to communicate in any tangible way. And when he was given access and instruction in FC, it was as if the floodgates had been opened. "He hasn't stopped talking since," his dad said, grinning.
I grinned right back, and went in search of Karen in the luncheon room, but before I could find her, Jeff Strully waved me over, asking me to join them at what turned out to be the TASH committee table. I said okay, and left to get my food, explaining the situation to Karen, who passed me on my way out.
To my delight, I was seated with Matthew and his parents, and so I had the opportunity to talk with his mother. She told me of her struggles with the school committee and special education department (in Connecticut), and her go-rounds with the superintendent.
The trouble is that the school department is refusing to allow Matthew to use FC in the public schools. Matthew is capable of going to a mainstream school, and deserves to be afforded that chance. Right now, they are willing to allow hand over hand assistance with actual writing (for those who don't know, hand-over-hand is when someone physically puts their hand over the other person's and manually guides them through what they are doing, be it writing, using eating utensils, brushing their hair, getting dressed - it's been a long-accepted practice in occupational therapy - of course in those cases the object is to teach a person to do things mechanically, not to encourage free expression so much, except perhaps in the case of artwork). It seems to me, and to Matthew's parents, that if hand-over-hand is allowed, FC should also be allowed.
It is, of course, highly political in certain circles, the specifics of which may be gotten into later, by me or by others - but I felt at the time, as I do now, that it's important to put our heads together and see if we can't come up with any ideas to get FC to be more widely accepted, and also trying to raise awareness among educators about FC. FC works and is real. I've seen that clearly as shown by my friend here in Newport, and at TASH. If we gave people more credit - thought in terms of "What is possible" and not "what we think we know" - who knows what could happen, and how much people, who previously could not communicate with others as easily as most, could share with us and teach us.