When Nat was just three, we took him to Mass General Hospital to get a diagnosis. Back then I existed among layers of reality; on the surface, the part everyone saw, was where Nat had no diagnosis. When dwelling there, I saw Nat in a blur. That’s because I wasn’t really looking at him. Because of the other layers. Below pretty outward face came the scared one, afraid of everything, imagining terrible things about germs, to fight the fear that this boy I loved was not the boy I loved.
The innermost level of me was the hard nugget that knew. I even knew what it was called, even though the one movie I’d seen about it showed me nothing like my Nat. I knew what it was called, but until that doctor said it out loud, I didn’t have to pay attention. That hard nugget just sat there in my chest, hurting now and then but ignored.
So the doctor then said, “It is called PDD, Pervasive Developmental Delay, and it is under the Autism Umbrella.” So then I knew it was autism, and that I had been right. But what did I really know?
This memory came to me today as I was thinking about the debate about the word Retard, and also Person First Language. I have helped my friend Tim Shriver and Special Olympics campaign against the “R-word,” to let people know that it is just as hurtful as any racial slur. I’ve written a few opeds and blog posts on the topic, always coming down on the side of, “words can hurt.”
But yesterday I saw this post on ThAutcast, and it made me wonder about how deeply words go. Does positive intent nullify the sting of a word, as long as positive intent is clear? I don’t know. I think about how someone once said something to me that was ignorant, about Jews, and she is a good friend, but it still hurt me. She wasn’t even using any bad words; she was just expressing in a neutral way a hurtful stereotype. She did not mean harm, but it did some harm. It made me think she was a little bit stupid in a way that I hadn’t known. It made me like her a little bit less.
Other friends of mine have slipped, using the word “retarded,” and I have gently reprimanded them. So awkward, awful for that moment. I try to move on, but then there is that thing in my chest, that nugget, and I can’t forget. There is a tiny slice of my brain that offers itself up like evil pie, every time I see those friends. That little piece that asks, “How could you have said that? In my presence?”
Sartre used to say that when you posit that something is that something, it immediately rises up out of its no-thingness, its unconscious being, and becomes the something. And then it is no longer the thing. It is no longer nothing. Or something like that. So then the moment the doctor said that Nat was autistic, he became that, and then he became something else to me. He was, at the time, unknowable. My mid-reality had become visible, the fearful know-nothing me, that just heard the words and let them become the boy. It would be awhile until Nugget me got stronger and took over. It would be a while until I started seeing Nat as just Nat, always, eternally Nat, and all that encompassed. I can posit that This is Nat, but as soon as I say it, he becomes Other than that, because there is so much more.
Nat’s autism is a big part of him. But it used to be so important to me to separate the guy from the autism. Is that because back then I hated autism? Will some people want to ban the “A-word” so that we’ll all have to say “People with autism,” to imply that there are so many other parts to those people? Or will they realize, like Sartre, that the word doesn’t touch the actual Being. Is it true that I am willing to say Nat is an autistic young man because I don’t fear autism? Nat is more than autism, anyway.
One might think we should let the Autistics or the Ones with Mental Retardation decide. But they are all individuals, and are not monolithic anyway. Opinions abound. So who owns the rights to a term? And how much power should we allow the words to have?