I WAS THINKING TODAY about a couple things I’ve posted as responses to other people, and how they actually might connect in such a way as my response to the one actually ends up explaining my somewhat intense reaction to the other.
The more recent of the two was in reaction to Bill Kenower rejecting the use of labels because he considers his own free will to be the only determinant of his life. It rankled me, more than I could justify or comprehend only from my general dislike of people thinking “will” is all there is to the world.
I know labels and diagnosis are supposed to be useful … We give that someone a label and now we can say they are doing this thing because of what of they have.
As I responded at the time, mine are extraordinarily useful. When your brain is wired in a way that conflicts with the ways in which the world around you is constructed (which, after all, was constructed for people with very different wiring), I find that being able to describe the whys and wherefores of that conflict certainly help me navigate, and, further, help other people adapt to me, so I’m not always the one, quite unfairly, doing all the work.
I’ll be honest: I wasn’t understanding what scares people about the label “autistic”. Recently, I re-read something else that I’d posted here and saw it in a new light. Perhaps an explanatory one. The key in Kenower’s post is that phrase, “what they have”.
In an earlier response to a post from The Thinkers’ Temple about use of identity-first language versus person-first language, I came down firmly on the side of the former.
I will venture to educate … people about the difference, and encourage them to use identity-first language unless an autistic person specifically asks them to do otherwise for them.
As I wrote in response, I’m still relatively new to all this, and I’m sure the matter is fraught with political peril, but I feel like “person with autism” is a phrase you’d only use if you think autism is a disease in need of a cure, akin to how we say “they have cancer” as opposed to saying “they’re a cancerous person”. I’m not going to spend what is presumptively the second half of my life, happenstantially the post-diagnosis part, looking to be cured. I’m looking to understand, and hopefully finding ways for others to do so as well. I’d hope that no one would call me “cancerous” should I ever have cancer. But, please, go right ahead and call me autistic.
It’s here, then, that I think I understand where Kenower is coming from when he refuses to say his son is autistic, preferring instead to say he was diagnosed on the spectrum. If you view autism as a disease rather than “simply” as a different way to order and organize a brain (and as a “disorder” only in that it doesn’t conform to the socially-accepted norm of order), of course the label is disturbing.
In effect, Kenower is saying that calling someone autistic is akin to call them cancerous, which of course no empathetic person would ever do.
If I had cancer, I’d hope that people felt sympathy. As an autistic person, I hope that people feel empathy. I don’t have autism, because autism isn’t a disease. I am autistic. I’m not afraid of what the label says about me either to myself or to the world, because unlike cancer it isn’t something to fear.
Fear of the “autistic” label, I think, comes from thinking that autism is something to be sorry for, rather than something to understand. My advice for anyone with an autistic person in their life: stop thinking of autism like you think of disease, and maybe you can stop being afraid of who they are.