My son’s language is made of a bundle of sounds that do not exist in the Spanish that we speak around the Río de la Plata. He repeats syllables he himself invented, he alternates them with onomatopoeias, guttural sounds, and high-pitched shouts. It is an expressive, singing language. I wrote this on Twitter at 6:30 in the morning on a Thursday because Galileo woke me up at 5:30. He does this, madruga (there is no word for “madrugar”, “waking up early in the morning” in English, I want to know why). As I look after him, I open a Word document in my computer. I write a little while I hear “aiuuuh shíii shíiii prrrrrr boio boio seeehhh” and then some whispers, all this accompanied with his rhythmic stimming of patting himself on the chest or drumming on the walls and tables around the house.
My life with Gali goes by like this, between scenes like this one and the passionate kisses and hugs he gives me. This morning everything else is quiet. He brings me an apple for me to cut it for him in four segments. He likes the skin and gnaws the rest, leaving pieces of apples with his bitemarks all around the house. He also brings me a box of rice cookies he doesn’t know how to open. Then he eats them jumping on my bed. He leaves a trace of crumbles. Galileo inhabits the world by leaving evidence of his existence, of his habits, of his way of being in the world.
When we started walking the uncertain road to diagnosis, someone next of kin who is a children’s psychologist with a sort of specialisation in autism informally assessed him. She ruled (diagnosed, prognosed) that he wasn’t autistic, that we shouldn’t ask for the official disability certificate (because “labels” are wrong, she held), and that he should go on Lacanian therapy and music therapy on Zoom —now I think this is a ready-made sentence she just gives in general to anyone.
Posts tagged as:
autism
Here’s an important article by Aiyana Bailin, who argues that the recent fidget spinning fad shows something disturbingly:
Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people
So here we see disability discrimination at work. For some neuro-atypical and disabled people, stimming is a way to reduce stress, and indeed also to concentrate better. But often they are told not to do this. The same holds for other forms of behaviour that neurotypicals consider ‘abnormal’. The fidget spinning just shows how much of a social convention, and hence form of domination, those social norms regarding ‘normal behaviour’ are, and that at least some of those conventions are biased against the needs of some groups of disabled people and neuro-atypicals.
Earlier this week, I came across another example. A therapist told me that social skills training for autistics entails, among other things, that they learn to look at the eyes of another person when talking to them. But why would that be a desirable good? What, except for some social convention, would make it that it is considered inappropriate not to look at the person you’re talking to? Why can’t we just accept it to be as it is – that for some people, it’s easier to have a conversation if they do not have to look you into the eyes?
But the good news is that the article by Aiyana Bailin gives us an opportunity to learn something. I suspect it will eye-opening to many of us. It’s an example of how disability discrimination works, and examples may well be more effective in showing the working of disability discrimination than some abstract theory. Yet it’s an example of a more general problem that Bailin wants to draw our attention to:
But the power structure is still there. There’s still a rigid hierarchy of who gets to decide which behaviors are normal or pathological. There’s still a societal subtext that tells people who are different “be less like yourself and more like us.” We need to work on that.