April 27, 2016
As I’m finishing this post, it’s nearing the end of Autism Acceptance Month, and almost Blogging Against Disablism Day (which is officially May 1), and the more I thought about getting around to writing it, the more I thought that it kind of stands at the intersection of those two things… acceptance of autism and disability, and opposition to prejudice based on disability.
We talk a lot during Autism Acceptance Month about the rights of autistic and disabled people to education, to employment opportunities, to accommodation and acceptance in public spaces. We talk a lot about our capabilities, and about what we understand about our experiences.
But I think that there needs to be an understood right of people—particularly young people—to not understand. And to not have that impact their right to access and to information.
Here are some examples of how what I’m talking about plays out:
My most-shared post is one in which I ask parents to tell their autistic kids that they are autistic. And every time it goes around, a certain number of people respond, pretty predictably, “But what if he doesn’t understand?”
Or “He’s too young to understand.”
Or “She’s too much in her own little world to understand.”
Or “She doesn’t look like she even notices she’s different. She wouldn’t understand.”
Or when we weigh in on issues of language preferences or sexual orientation or gender identity among autistic people, people say “My child can’t dress himself; he would never even understand this debate.” Or “Well, you’re fortunate to be able to understand your experience this way, but my child wouldn’t.”
(Side note: There’s a lot I still don’t understand about gender identity. That doesn’t make discussion of it unimportant or useless to me. That would still be true if I couldn’t speak or type or dress myself…which I couldn’t when I was the age those kids are now.)
Or we talk about the importance of learning-disabled kids having access to the same curriculum that their non-disabled classmates do, not only material judged to be on their own instructional level.
“But what if they don’t understand” the same books as their classmates are reading?
Well, so what if they don’t understand? How do you know if you don’t let them even try? Is it the end of the world if you give someone a chance to engage with the same material as their age-mates and they don’t understand?
They might not, but what if they did? What if they would, but you wouldn’t even give them a shot?
We have to be allowed to not necessarily understand perfectly, not understand everything, not understand right away, or to try and not understand at all, without being declared forever incapable of understanding, if we’re going to get a fair chance to understand. Those have to be acceptable possibilities.
We also might understand differently. We might understand something from an angle that you hadn’t considered. We might understand something later. It is actually pretty common that we understand something suddenly, but after it’s distilled for a long, long time.
That we have access to the information is important, the whole time, not only in the moment when we come to understand it. (Somebody tell me who here really understood, like, Huckleberry Finn, or A Wrinkle in Time, or To Kill a Mockingbird, the first time you read it? To say nothing of something like Hamlet? Here’s a great essay about how practically everyone has spent many decades misunderstanding a well-known poem. Yet we don’t preemptively decide of non-disabled students that they will not understand this poem, so they should not read it, even though chances are that they will not understand it. White people are famously having a hard time understanding Beyoncé’s “Formation.” In my elementary school, we were taught to sing “This Land Is Your Land” in kindergarten, “Erie Canal” in second or third grade. I guarantee you that we did not understand what those songs are really about when we were five or seven or eight years old. I saw Peter, Paul, and Mary perform when I was about that age, too, and I did not understand “Blowin’ in the Wind” or “We Shall Overcome.” Does that mean we should have been denied any knowledge of those works?)
And none of this means that it doesn’t matter if information is presented to someone in a form that they can understand whenever possible, whether that means in simplified language, with pictures, subtitles, or in whatever way increases its accessibility. It means that preemptive assumptions about what someone will or won’t understand aren’t a reason to not even present them with the information (or discussion, or work of art, or material that the rest of their class is learning).
How are we supposed to wrestle with information we’re not allowed access to? How are we supposed to ever understand if the fact that we don’t understand is reason enough to keep us from the tools of understanding? Like, do you see the trap?
It starts to look like you don’t, in fact, want us to understand.
Non-disabled people are presumed to be capable of learning from experience and becoming better informed over time. Part of that process is necessarily not understanding something at some point.
If the benchmark we have to meet to be given vital information about ourselves and our own lives is that there is no point at which we don’t or can’t understand it, that’s a game we can never win, because that’s not possible.
If whatever assumption somebody wants to make about whether we will or won’t understand is enough to deny us the information that would allow us to exercise more informed control over our own lives…how are we ever supposed to gain the rights to information, or to greater autonomy?
Just don’t be disabled?
And one major irony is that we write and write and write and write about the importance of knowing, of having language for our experiences, about what it means to be autistic, to be disabled, about the positives and the negatives, about the harm of compliance training, about the harm of indistinguishability as a therapy goal, about what acceptance does and doesn’t mean—and the majority of non-disabled parents and professionals persist in not understanding. Often sincerely. But often willfully. A lot of people just struggle with what we’re saying, but a lot of people keep intentionally twisting and misrepresenting what we say and hearing only what they’re determined to hear.
And no one says that for the crime of not understanding, you forfeit your right to new information, or to information presented differently, or to any access to information, about yourself or the world, or your right to keep trying to understand, or to take time to process unfamiliar concepts.
Why is that?
My high school math teacher would say to us periodically, “Kids are always asking me, ‘when am I ever gonna use this?’ And the answer is…probably never. But if you don’t know it, then you definitely won’t.”
If someone is given access to a discussion or a set of information, it’s true, they might not understand it. They also might not be able to express what they do or don’t understand. If they’re not given access at all, they definitely won’t.