Wednesday, September 11, 2013

Mother tongue: Orangutans and Autistic education

This view is going to be controversial with both Cure-wing parents and Pride-wing Autistics, but I need to say it.

I do not believe in a cure (cue parents.) But I do believe in treatment (cue Autistics.) But I do not believe in calling it treatment. Nor do I believe in normalization or the ritual sacrifice of Identity. (cue confused looks from both sides.)

I do not call it treatment.

Call it education tailored to Disabled. Those like me. Teaching Disabled to care for themselves as well as they can, we can, and be as self-sufficient as possible, while not being afraid to ask for help. Not being ashamed of being just as imperfect as you, in noticeably different ways. Teaching Disabled to interact successfully with Nondisabled without asking them, us, to sacrifice our identity.

 We have this. Sort of. But it is not good enough yet. And not everyone can access it.

We need to improve our Disabled Education systems. Not just our supports (cue Autistics). Those are important. But so is personal growth. Yes. I support teaching Autistics and Disabled to learn self-care skills. I support teaching life skills. The program I'm in right now teaches those things. I want to learn them.

I've been told I shouldn't. I've been told I can't. I've been told I don't need to.

Our systems are not perfect. They need improvement. That's why I speak out. That's why I write.

Not all education is tailored to Autistics or Disabled. Yes, some of us can learn and thrive in those environments. Yes, we also fall through the cracks. Yes, mainstream education should be available to everyone. Yes. I was mostly mainstreamed. Yes, I made it. But why not have education just for us? We're different. We don't need to be shoved into a mold that doesn't fit. Not all mainstream education is going to work for us.

Some people take the idea of Special Ed for granted, as though it's something we're forced into and need to break free from.

I had to fight to get into Sped. I had to be a serious self-advocate. I've almost been tricked several times into agreeing to less than I needed. I'm overestimated. I'm patted on the head and told to run along and be my eloquent, charismatic self. I have had to claw my way into Special Ed just as violently as some people have had to claw their way out.

I'm not asking anyone to blend in or conform. I'm not saying "fake it." But speak two languages. Speak the language that's most comfortable for you: Aut. Your own voice, your own way of communicating. Be proud of it. Understand it in others.

When you move to another country, it's useful to learn the language that's spoken there. We live in Typicaland. I have spent years learning their language, learning to communicate with them - to make NT friends even though NT is not my mother tongue. To avoid: miscommunication, hurt feelings, misunderstandings - that are nobody's fault. The mere result of a language barrier. To understand NT conversations, so I don't feel like I'm standing in the middle of a group of people who are speaking Martian Trade Pidgin.

Yes. They need to learn to speak Aut. And they're trying. We're helping them. Baby steps. Training wheels. They're getting it, slowly. But why should it be just them? It's 50-50. We work. They work. We can become a bilingual planet.

I am a successful (quasi-successful), bilingual Autistic.

You say: Parents say: People say: "Words. Those words. Why words? Why wouldn't we call this treatment or therapy? Isn't it treating Autism?"

No. It is teaching Autistics. It is Autism-centered or Disability-centered education. It is education for those whose needs are different from the norm. The word Treatment is stigmatizing. It is pathologizing. You treat cancer. You treat AIDS. You treat sprains. You do not treat me. Not unless I am sick. You do not treat me for being who I am. You do not treat my personality. You teach me.

I want to be taught.

I am afraid.

I don't want to set my house on fire because I forgot I was cooking.

I don't want to get run over. I don't want to be drained of finances. I don't want to be locked in a basement or raped or kicked out of my home.

I don't want to miss half of a conversation because it is all subtext.

I don't want to make a constant fool of myself for misinterpreting someone else's culture. ND (nondisabled) culture. I don't want to embarrass myself over a linguistic error. In Japanese, you can accidentally call a young girl an orangutan by a simple change in the length of a vowel.

Sometimes I feel like I'm "calling a young girl an orangutan" when I talk to NDs. I don't want to. I don't want to say something innocent in my language that has a ridiculous, or even offensive, meaning in the ND tongue. Among my own People, it might pass. But among NDs, it's lost in translation.

I have come a long way. I have learned a lot. I have done most of this on my own.

I have trouble with sensory processing. Lots of Autistics do. They have programs for that. Auditory Processing Therapy. Sensory Integration Therapy. But don't call them that. Call them Sensory Integration and Auditory Processing Training.

Semantics? Maybe. But semantics can be important. The words we use both reflect and reinforce how we view the subject. Treatment = disease = broken. Therapy = pathology = needs fixed. These words come from people who think that I am a disorder, and they make people think that I am a disorder, and those people use words that make people think that I am a disorder. It is a snake eating its own tail.

I am not broken. I am not a disorder. I do not need fixed.

I need to be taught. Teach me.

I am your child. I am your student. I am your daughter.

Teach me.