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.


Tuesday, December 11, 2012

I Am A Mother.

Layenie, my wife, is a pediatric nurse.  In the US, RNs are trained to be proficient at all kinds of nursing and prepared for whatever comes up.  In the UK, where she was first educated in the nursing profession, candidates must choose a field of specialization, and Layenie chose pediatrics.  Consequently I feel very comfortable asking her questions about the health and development of our young sons.  They will turn one in January and are ahhh they are soooo adorable.  You can see them on my profile here, and another pic on the Tiny Grace Notes Facebook Community, and a ton of pics on my own FB page, oh and you can see Layenie on my Twitter... but I digress.  I might be digressing because the beginning of this post hurts a little to say.

It was the other evening, and I had been staying home with the boys, which I do once a week, because, you know, child care costs a lot, and also, as I said, adorable. Benjy was doing this thing with his hand which is very like something I also do with my own hand, so this is what I said, and although I am not usually able to hear myself, I can derive a proper quote from the ensuing conversation:

Ib: "See what Benjy's doing with his hand there....Is that OK?"

Layenie: "Yes, he's learning to wave, which is developmentally--wait. Wait a minute. Of course it's OK. Even if he's doing it just for fun or because it feels good, it's going to be OK, OK? You do things like that, and you're OK. Does it ruin your life?"

Ib: "Well..." (I was thinking about the past, about the hard things, about the things I didn't want my boy to have to live through, like school, if he is like me.)

Layenie: (As if she could hear the inside of my head, rapidly changing the scenery--) "How 'bout now? Does it ruin your life now?"

Ib: (Contemplating the Now, beaming, andd..... there goes my flappy hand) "No. My life is awesome."

Layenie: "I love your hands and I love you." (This made me cry tears of joy, and made me think.)

Then she carried on doing what she was doing with the kids but I went inside my own head a bit and crawled all over myself: hypocrite much? Would I have wanted to silence Benjy's hands? No. I am not a hypocrite, I just wanted to help him gird his loins, if necessary, for the slings and arrows of-- but then I thought about it some more-- a world that is largely not the same as it was. The world is better now.  It really actually is, and it is moving in the right direction.

Not that it is easy now.  Now, we are called burdens and a crisis and a national epidemic. Horrible "schools" still need to be closed yet and children are being killed to this day as a result of the way we are portrayed. But people are starting to protest this, people's mothers are starting to notice and say Hey: stop talking about my baby like that, I'm talking to you: stop it right now. And they are going to have to listen. And we are saying it and we are typing it and we are even getting into Washington DC and on TV and saying Hey: stop talking about us like that, I'm talking to you: stop it right now.  And they are going to have to listen. And things will change even more. Autistics and our families TOGETHER.

When I was in school, we were called nothing, we were nowhere, we were hidden in institutions, a mystery, something to be very afraid of. Violent, "idiot savants" (I have actually been called "idiot savant" to my face in front of a room full of people) and "morons" and "mentally retarded with autistic features" (I am sorry for the language but I have read so much of this language in the historical files of my friends). Any "refrigerator mother" who was defiant or foolish enough to keep us out of institutions deserved what she got and there weren't enough of those to get us on protected lists or legal classifications or parent to parent support networks. Our mothers, forever at fault, had no way to find each other, and every reason to hide themselves in shame trying to rebuild their lives, since most of them would never see their children again.  For those who kept their children against all odds, they needed support even more, but where to find it? Probably we would become homelessness statistics and end up in jails if we could talk; and if we couldn't, the protection people would put us in institutions anyway and arrest the alleged "refrigerator mothers" who had tried to keep us out, if they were poor, or make them poor, if they had financial means.

The world changes slowly, but it changes, and I am celebrating that, today. If Benjy does his hands like that because he is stimming, if JoJo rocks because he rocks like I rock, may the world keep moving into the world I want it to be for him. May I be tireless in helping to see this happen.

I am a mother.  I know what the depth of this prayer feels like.

Thanks for listening, and thanks to all who pray and enact it with me.