Saturday, December 29, 2012

I Was A Self-Loathing FC Skeptic

You can read in Loud Hands: Autistic People, Speaking about the shall-remain-nameless professor who said in front of me and many others in graduate school that autistics did not know what it was like to be themselves because they had no theory of mind, so one had to read research about them done by others in order to understand them at all, (which presumably if you were one of them, you never could anyway--this part is logically editorialized by me).

There was another professor who said in a large class of aspiring special education and psychology researchers, "Except for Grace, the idiot savant, who doesn't count," because I recalled more than seven allegedly random numbers which were not actually random, but had a clear pattern, and he hadn't told me ahead of time that the object of the exercise was to demonstrate that nobody can recall more than seven random things in short term memory.

Those two professors I mostly steered clear of.  A third one, I trusted, because he seemed lovely.  He told me that facilitated communication (FC) was a dangerous non-scientific fad which co-opted people's voice and autonomy, and we, as scientist-practitioners, had to reject such nonsense, even though we should still go to TASH, where some people believed in silly things.  He acted as if he meant this nobly, and so I believed him.  But I still didn't quite feel safe enough to tell him who I was, that his colleague had hit the nail on the head with the completely inappropriate joke of "idiot savant."

My graduate university is famous for its brilliant education program, which runs several of its own conferences, and from which one can get a job even in an economic downturn.  I was well-trained in several kinds of sciencey goodness by some seriously important people.  I kept my hands in my pockets all the time and made sure nobody ever came to my apartment while making a big giant show of becoming elected President of the student association to demonstrate my ever-loving sociable respectability.

I spent almost all my spoons, and became quite ill in the process, but at least I learned really important scientific academic things, like how to be patriarchally condescending toward my fellow Autistics, "protecting" them from themselves while I secretly cowered in the migraine-inducing limelight, doing whatever I could to avoid exposing my need for shade and quiet and peace.  (I also learned really amazing actually useful things, such as see link below.)

So when you hear me now, as you will hear me now, defending people whose voices are made manifest by typing, you should know that I am not a scientific naif.  Here is what happened: I met many people who communicate by typing (as I often do myself) and found out from them what their life experiences were.  In epistemological terms, this is sometimes called phenomenological knowledge, or to put it more idiomatically, getting it from the horse's mouth.  I consider its warrant stronger than that of many of the quasi- and experimental studies that have been used to devoice those who are non-speaking, because of the question of goodness-of-fit.  In other words, I am a person who has been carefully trained to understand what various kinds of research studies are able to show and not show, and here is an excellent book I was lucky enough to help edit for the top ed research organization about just that topic, if you are interested in delving more deeply into it for yourself.

And it is because of this that I have changed my mind and attitudes about the breadth of communication choices of people whose way of communicating is through typing, even if they are not yet entirely independent with it.  In other words, you can tell me all about FC being 'unscientific,' but know this is something I've thought about long and deeply, and I will likely answer you in graphic detail about ethnography, phenomenology, epistemology, knowledge warrant, and patriarchalist colonialism.  I can do this for a very long time, because I was once like you are, if you are like I once was.

Thanks for listening.

Best,
Ib


38 comments:

  1. G-d I love you. My brilliant Sister. Brilliant life, now that you're in it.

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    1. I love you so much! Did you see my #Tweetbrag that you are my sister?

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  2. Yes, the limits of science, the limits of what we can know scientifically. We have to understand those, even when we look for valid ideas and programs that help. We have to acknowledge what we can know and what we can't. what we can prove and what we can't, while at the same time steering clear of what is dangerous, what is dehumanizing. You have a beautiful voice that you have chosen to use for good. Love.

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  3. Thanks for this. I wrestle with my attitude toward FC because of the limits of what we can learn through studies vs. the people I know who have become independent of it and their ideas about why it was necessary for them.

    My own attitude is that it works when it is done right, but that there is a potential for charlatans to abuse it, like that lady who claimed she was doing FC for someone who was in a persistent vegitative state.

    I like your attitude, though, because the only thing that frustrates me more than pseudoscience is the condescension that leads to dismissing things that have not been falsified yet.

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    1. Oh! I am so with you on that Michael Scott Monje Jr. There's that one you mentioned, and those early nineties ones who were jumping on the sex-abuse Munchausen bandwagon, one of whom wrote a recent sort of self serving article about herself doing that by accident. They all do say it was by accident (even those other ones implanting "false memories" as they put it at the time, verbally) but I remember being in group therapy during that craze (and I can talk but at the time it was only about facts and not emotions) and it certainly felt like people were trying to gaslight and strongarm me into saying non-facts (AKA lies) about my family. Accident, or weird zealotry mob effect? A little of both?

      Since I was perfectly good at talking about facts, I could say "No. I was there and would have noticed." But for those who do not verbalize about anything, of course it sort of stands to reason that the kind of person who is willing to tell people in therapy how they feel (and even what had happened in their life!) instead of asking them is going to have a field day controlling what people who do not speak appear to say.

      But my point is that there were other perfectly decent therapists there who helped me learn the language of the heart and how to communicate my feelings to others. This changed my life. The fact of horrible (or, to be more charitable, incompetent) talk-therapists who have agendas and ought to be stripped of their licenses yesterday does not automatically discredit the concept of group or talk therapy as a whole.

      What we need to be focusing on, I think, is finding ways to catch out charlatans and mean people in every field like this before they can do damage. This includes teaching, nursing, job coaching, psychotherapy of all kinds, SLP, OT, PT, and yes, FC facilitation.

      This is the conclusion I have come to after having met people who no longer need physical support but say they once did, etc. It made me think of alleged practitioners I have met in other fields who need to get out of their respective fields, and wonder why their whole fields were not immediately discredited (I am glad they were not, but it is an interesting thing. You should see some of the heinous people I have met in the private non-profit world, for another example...)

      In short, I think your point is very well taken!

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  4. Thanks for this awesome post.

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    1. Thanks for the kind words. I can tell you are awesome yourself.

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  5. Ibby - this is so important and you are wonderful!

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  6. You are brilliant, good and kind.Thank you for all the good you put out into the world!

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    1. You are super wonderful! Thanks for all the good YOU put into the world!

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  7. See, it has never taken all "sciencey goodness" for me, more like "feely goodness" or "sensey goodness." The little I know about FC comes from people who have used it. That feels right. Thanks Ib.

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  8. Thank you, wonderful Ib!

    Is it somehow revealing that I get all excited when you talk of ethnography, phenomenology, epistemology, patriarchalist colonialism, etc... but that my favourite part is your description of your hands in pockets. To me - that image is revealing of your connection to the deep understanding you bring to this discussion - because you can "know" in a far more intuitive and connected way.

    I am glad your hands are out of pockets now... and extended to so many of us in a way that shares your sciency learning along with your deep understanding of those who experience the world differently.

    Gratefully... Leah

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  9. Ibby, this is REALLY important. Thanks for writing it. I think there's a book here.

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    1. Really? Super flap flap! Let's talk!

      Everybody, Phil is my awesome editor buddy from the next book you can't do without, called: _Both Sides of the Table: Autoethnographies of Educators Learning and Teaching With/In [Dis]ability_. If you buy my chapter for the price of the book, you get all the other Super Excellent chapters for FREE! It will come out this Spring!

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  10. My 40 year-old nonverbal autistic son Ben Golden, who has used his type of Facilitated Communication for over 18 years, started three months ago to try to use the ipad to be an independent communicator. Ben has asked me to find out information about persons who started as FC users who now state they are independent typers. FC proponents write about many independent typers but I only know of a few. I would appreciate information to be sent to my email of golden.arthur@gmail.com I also wish to note that I recently found that "positive partnerships" (funded by the Australian Government and not started until 2008) fact sheet 6 on "Facilitated communication and autism" page 3 states (which I would like information to be able to publicly challenge):

    "Absent from the literature are details of the small number of individuals who have achieved independent communication using FC, although such individuals are mentioned in case studies (e.g. Biklen, 1990; Crossley & Remington-Gurney, 1992) and anecdotal reports. Details about the skills and characteristics of such individuals, along with the details of the process that enabled them to become independent communicators, would provide valuable information to the field."

    Arthur Golden

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    1. Thanks for asking, Arthur Golden. I will email you soon.

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    2. Hi-just found your blog. I am a teacher and I have a student who is beginning to communicate via FC at home. I am not seeing the same results, but I completely recognize that this may be due to my lack of training/ familiarity with FC. I, too, would be interested in reading about persons who have developed into independent types (or any advice regarding where to start to find out more about FC support/ development. If you still have the email you sent Mr. Golden, could you send it to me as well? bkrizek@hotmail.com. Many thanks!

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    4. Just a reminder that I have not yet received the promised email from you.

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    5. I emailed you and did not get a bounce-back, Mr Golden... do you have another alternative email address I could try to use and see if it is more successful, or should I try again at the same one?

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    6. Arthur Golden I think there will be some of them at ICI in Syracuse NY this Summer. I see you erased an answer. Can you and Ben come, do you think? I will also be there and it would be an honor to meet you both. By "them" I mean the people I referred to in my lost email, those who barely need support if at all now to get their thoughts out. They are doing a panel!

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    7. B Krizek I warmly extend the invitation to you also, though it seems you got my list of the usual suspects. I am not sure Jamie will be there, though. Nor of course Birger, but if you can read German, he's a knockout.

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    8. And if you want to witness true brilliance earlier in the journey, poet and Activist Amy Sequenzia--whom I'm flap-happy to call my friend--is another person you can find there. For beginners, another friend of mine you may be able to relate to is Ariane Zurcher, an awesome mother learning how to support her daughter in learning to get her thoughts out by typing.

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  11. These naysayers can kiss my biochemistry PhD ass.

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    1. Jane Chin wins teh Sciencey Goodness Prize because biochemistry is the most sciencey thing evah and also she wrote "ass" on my blog, double points unfairly awarded by me when I am laughing really hard.

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  12. Lol to your response to Jane! And thanks for your post. It helps remind me that we are all on a journey of potentially increasing communication skills (even English teachers work on improving their lesson plans, right?). I was intrigued by your comments on the progression of your ability to speak about emotions...it reminded me so much of my aspie son, who can answer any factual question from the textbook, but has conniption fits over concepts like character motivation in a story. I humbly suggest another blog post with your insights on this subject. Happy new year!

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  13. Good idea Carolmom! Putting it in the hopper...

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  14. Carolmom--I'm actually going to write a giant book about this. :)

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