So once again, we arrived back at the question of what is an appropriate setting for our girl. That has been the question that has animated this blog from the outset: what sort of world will work for a girl on the edges of the autism spectrum?
When I'm confronted with these very difficult life questions — the kind of questions that ask you to make decisions on behalf of someone you love without really having any idea of what would be best (or even good enough) — I sometimes run in the opposite direction. Instead of going to one of the many Autism Awareness Month events around the city where the Empire State Building was bathed in blue light, I ran full tilt away from the problems at hand. Instead of going to an autism event, I went to hear British cultural theorist Sara Ahmed talk about her project "The Willfulness Archive."
Ahmed is exploring the role of willfulness in the struggle against oppression and collecting these stories of willful subjects in what she envisions as a mobile archive. She opened her talk by reading a tale called "The Willful Child," from the Brothers Grimm:
Once upon a time there was a child who was willful, and would not doeth as her mother wished. For this reason God had no pleasure in her, and let her become ill, and no doctor could do her any good, and in a short time she lay on her death-bed. When she had been lowered into her grave, and the earth was spread over her, all at once her arm came out again, and stretched upwards, and when they had put it in and spread fresh earth over it, it was all to no purpose, for the arm always came out again. Then the mother herself was obliged to go to the grave, and strike the arm with a rod, and when she had done that, it was drawn in, and then at last the child had rest beneath the ground.Tale #117 is among the grimmest of the Grimms' household tales, and I found the story particularly difficult to hear. Ahmed unpacked the story quite brilliantly as a metonym for the willfulness of oppressed and marginalized persons who refuse to go along and get along. I heard the tale somewhat more literally: as an account of the struggle of autistic children and their mothers carried down to us through folklore.
At first my thoughts went to the most literal cases of the mothers (and fathers) who murder their children on the spectrum — the ones who beat them or strangle them or poison them or toss them out of windows or off of bridges. My thoughts went to the newspaper headlines that try to explain what everyone imagines as unthinkable: the murder of children who fail to conform and seem to be never at rest, even in their sleep.
Then, following on path of explication that Ahmed explored, I asked myself, what is the rod that the mother wields? Is it the psychopharmacology that makes it possible for our girl to sit still enough to do her school work, make her paintings, and engage in the occasional conversation? Is it the applied behavioral analysis that made it possible for her to gain some capacity to comply? Is it the school bell that startles her into the conformity required by the school day? Is it the very diagnoses of autism, of ADHD, of Oppositional Defiance Disorder, that takes her neurology and renders it as pathology.
Is it the incapacity to comply what we are diagnosing when we diagnose these "disorders"? Should cultivating the capacity to go along to get along always be viewed as oppression? And if not, when is it not oppression? How (or rather, to what extent) is the parent's desire to ease a child's way in the world hijacked by other forces that wish to exact a complacent conformity?
The willful girl's arm rises from the grave. Our girl waves her raised hand frantically in the hope of being able to remember her answer long enough to have it in mind when she's called on. Our girl raises her hand because she longs to belong, longs to get along, longs to be able to go along. So would another two months of school each year, another two months where there is so much to go along with, be a way to help her thrive, or just an extended blow to crush her into a deadened conformity?
Today is a religious holiday of rebirth: a day for writing of bunnies and bird's eggs, of renewal and of budding possibilities. The ghastly arm rising from the grave is a very different sort of resurrection than one typically imagines on a day set aside by the Christian religions for celebrating renewal and rebirth. Partial, grasping, longing, the willful child reaches out to connect, to find a way to grow tall and strong. How do we reach back with open arms?