April 27, 2016

The right to not understand

Posted in Uncategorized tagged , , , , , at 3:21 pm by chavisory

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.

May 2, 2013

Dear Emily

Posted in Marginalization, Uncategorized tagged , , , at 1:44 am by chavisory

I meant to write this even before I knew that today (er, *cough cough* yesterday *cough*) was Blogging Against Disablism Day.  Hey, serendipity!

I saw this on Facebook, shared on a friend’s page, a few days ago:

Emily Xxxxx
Hey, my name is Emily. I’m 19 years old and I have high-functioning autism. I was diagnosed when I was 2 1/2, when my parents noticed that I stopped talking and developing normally. I never wanted to be snuggled. Loud noises scared me badly. I would parrot everything my parents said. I didn’t like people in general. I’d have a hard time sleeping at night. I was a very picky eater, and didn’t like things if the textures weren’t right. I also didn’t like it when things would suddenly change. Once I was diagnosed, I was put into speech and occupational therapy right away. My therapists thought that I would never be able to go to a mainstream school, learn how to drive, keep a job, or get married. I proved them wrong. I was put in an IEP program when I went to an autism preschool at 3 years old. I learned how to read when I was 4. I was good at remembering things with details. By the time I turned 5, my teachers ran out of things to teach me that were in their curriculum because I picked it up fast, so they started teaching me things that I would learn in kindergarten.
Now I’m in my freshman year of college,I changed my major this past semester to studying special education, and not social work. I work part-time in a call center for an anesthesia medical billing company as a billing specialist. I stopped being on the IEP program when I was in 9th grade. I have a driver’s license, I graduated high school with a 3.2 GPA, I’m engaged to be married next fall to an amazing guy, who loves me and accepts me for who I am. I still have some OCD tendencies, and I still have some texture issues when it comes to certain foods. For the most part, people can’t even tell that I have autism.
For you parents out there with children on the spectrum, don’t give up on them. Help them reach for their potential. Look for the talents that they have, and help develop them. My parents didn’t give up on me, and I’m forever grateful for them, because I get to live a normal life. I am getting married July 5th.
Thank you,
Emily

Dear Emily,

I saw your post on Facebook, through a friend’s page.  (I’ve removed your photo and last name.)

My name’s Emily, too.  And, with some notable exceptions, which we’ll get to, I could’ve written large chunks of your story.

You’ve done a lot, and you should be proud.  But your note left me worried and uneasy for you more than anything else.

*****

I never developed normally.  But I was misdiagnosed, and there were no IEP’s when I was in school anyway.  I don’t know if there were special schools in our area, but if there were, from what I’ve heard from friends who were in special ed, nothing leads me to believe that they would’ve been good places.  Speech and occupational therapy existed, but it had been decided that I was just shy and stubborn and didn’t want to talk, not that I was in fact having serious language problems.  Far from being told that I would never do things like go to school, live by myself, or get a job, it was just assumed that I should be able to do everything that everyone else did, and so no one thought that they needed to teach me anything.  I had to just figure it out.  It was fly or die.  And that much I knew for sure.

I read a lot.  Thankfully, my first grade teacher was good at teaching writing, and I loved it.  I spent a lot of time outside.  I learned to drive.  I was in gifted programs throughout school.  I graduated from high school with a 3.9 GPA.  I was captain of my scholar bowl team, copy editor of my senior yearbook, and editor of the school creative writing magazine.  I graduated from college with honors and with two degrees.  I learned to stage manage and held office in the college debate society.  I worked in a campus biology lab, for the local community theater, and then as a barista for several years.  I moved to New York with friends, and I work in theater full time now.

And for most of my childhood and adolescence I was in a desperate race to prove, both to myself and others, that I could do anything that I needed or wanted to do, because I was so (reasonably, as it turns out) terrified of winding up not being allowed to live my own life.

I’m hugely proud of a lot of what I did.  But I also did some fairly horrible things to myself, and it took me a long time to realize that the fact that I had to wage that war in the first place was wrong.

Recently I was out with a friend, and she said “Your education sounds like hell.”  I had to agree.  It was, and no one had ever said something like that before, or told me that yes, it was all real.  Most people trivialized it or called me spoiled or oversensitive or assumed that because I was smart, it was all easy for me, not that it was war, day in and day out.

*****

Sudden noise, visual over-stimulation, and unwanted touch still hurt me.  I’m still very sensitive to texture in my food and clothing.  I still walk on my toes, I have a strange gait and an accent that people can’t place.  Frequently my emotions don’t connect to my language abilities very well and so there are things I can’t communicate.  I worked really hard at developing speech, organizational, and motor planning abilities, but they can still be overtaxed, and I can’t go around expecting to be able to function in the ways a non-autistic person would take for granted, or to push my boundaries for extended periods of time.

And none of that is a reason I can’t be happy or productive or ambitious.  It does require that I honor how I’m actually built and how I’m not.

*****

I’m glad that I had people, who I know and who I’ve never met in person, in large ways and small ones, in words and not in words, deliberately, and not so much so, to tell and show me that it was okay to be autistic.  That it isn’t wrong.  We’re not wrong, to be this way.  That we’re okay.  That we’re supposed to be here.

I’m glad for all the writing and information from other autistic people that helped me put it together that autism is not what we can and can’t do.  It’s not how we’re defective or inferior.  It’s how we’re configured to process information, to feel, perceive, and use language, to learn and grow differently from most people, and there’s nothing wrong about that.

I don’t take pride in the fact that a lot of the time, people can’t tell I’m autistic, because all that means is that most people wrongly equate the condition of autism with prejudices about what we’re not supposed to be able to do, or with bigotries about us being incapable of empathy, love, warmth, or friendship.

These days, most people know that I’m autistic.  Partly because I write and talk about it, but partly because both my ability and willingness to expend energy on suppressing physical signals of autism have gone away.  I’m glad that I’d already read some of Amanda Baggs’s and Rachel Cohen-Rottenberg’s writing, so that I knew what was happening when it started happening to me and didn’t panic or blame myself.  My brain gives me fewer choices now about how I can and cannot abuse it.  I had to start letting myself feel what I feel and need what I need again.

And I’m better off.  I mean that.  I’m healthier.  I sleep better.  I feel like a whole person again.  I feel like a real person, like I fit in the world again.  It’s an incomparable experience, to know that you belong in the world exactly the way you are, that no one can take that away from you again.

*****

And the other thing?  That whether or not anyone can tell you’re autistic has anything at all to do with what kind of opportunities you have, or what kind of respect or affection you get from other people?

That’s wrong.  That’s bigotry by definition.  If you would be worse off if other people were able to tell that you’re autistic–regardless of your actual, individual character traits, qualities, abilities, and intelligence–that doesn’t mean there’s something wrong with being autistic; it means there’s something very wrong with how other people see us.

*****

By all means, we should tell parents to look for and nourish their children’s strengths, and believe in their potential.  But not giving up on your children doesn’t mean putting a premium on them having the most apparently normal life possible.  Normal and good, or worthwhile, or satisfying are not synonyms.  My life is hugely different from yours.  Other autistic people will have lives that look very different from mine.  And that doesn’t mean that they’ve failed.  That doesn’t mean that they or their parents did it all wrong.  It means that they’re different, and made the best choices possible for themselves, and that fighting their autism or any other aspect of their true natures into the ground was just not on the priority list when compared to learning things, or spending time with a topic of obsession, or just enjoying life for what it is.

What we did–to survive, to grow up, to have our own lives–is not wrong.  But a lot of the ways in which we were forced to were.

I think we’re capable of making a world where no one’s success or acceptance depends on how well they manage to look like something they’re not.  We all deserve better than that, and so do you.