Sunday, April 19, 2015

Day 19: Acceptance is Communication

Today I am not going to write my own thoughts and perspectives on today's topic of communication.

Instead, I am going to allow the voices of the experts to speak for themselves.

These are the voices of autistic adults.

They are the true experts.

We owe it to them to listen.

“You wonder why it’s so hard to have a conversation with me.  I have no idea what you are saying.  Way before the trouble with dual meanings and taking things literally and the time it takes to process spoken language and the time it takes to formulate a response that will make sense to you, the first barrier is the noise….

More than one person speaking at once or a TV in the background or that terrible sound coming out of the tiny speakers on your phone or iPad can prevent an autistic person from hearing what you are trying to say.  Too many sounds at once can lead to a meltdown.  My brain is not sorting these things the way non-autistic brains do.  I cannot efficiently weed out what you might think of as background noise....

Acceptance is a room (dimly lit) where people talk slowly and make sure everyone has a chance to communicate in whatever way works best.”

 “They say I’m articulate.
(I think about all the words that stay locked in my throat, and I give a small and terrified smile and look over their shoulder and into nothing at all.)
I’m really quite lucky I have such a command of language.
(There are maybe five people in the whole wide world I can talk to face-to-face without wanting to die, without having a panic attack, without needing to hurt myself or sleep for hours afterward. Two of them receive speech therapy. None of them obey the usual laws of dialogue. I know that, really, I’m lucky to have anyone at all.)
My verbal agility is a sign of something, they’re sure.
(When I’m trapped into a conversation in the kitchen of someone else’s home, I stare at the table and see nothing at all, and my throat closes and my ears ring and the world is small and distant and hot and I am agile because adrenaline alters our capabilities.)
I’m really quite social.
(If I am asked how are you I will always say fine. If you ask me anything at all I will throw as many words as I can in your general direction. I can have quiet hands but the loudest mouth, I’m very advanced, and for my next trick I’ll even ask what’s up with you.)
I can answer every question you might ever have.
(Except for what do you need or how do you feel or do you want anything or is this okay.)…

I’m articulate.
(So you don’t have to listen.)”

“First thing, everybody communicates.

I will say it again: everybody communicates.

If you don’t understand the method, this only means that you don’t understand, not that there is no communication.

Disabled people who have difficulties with expressive language, or who are non-speaking are often thought of as not being able to communicate. This is because the majority is sometimes too lazy to think outside the box. Yes, I said lazy. We also find it hard to understand the majority’s language but we are pushed and forced to learn it, and to act in compliance. Even when we are only a few steps from the majority’s way, it is never good enough. We are consider to be “able to communicate” only if we speak, and act in accordance to, the language the majority chooses to know.

This attitude, seen in parents, teachers and other professionals is one of the things that need to change.

I am a non-speaking Autistic who has learnt how to communicate in a way that the majority is able to understand. It was not easy, it still isn’t. Even after I had shown how much I knew, how much I was learning, despite not being formally taught, even if I no longer cried as a way to let people know that I was trying to convey a message, the default attitude of teachers, doctors and others was still dismissive. The attitude of the groups I mentioned are still dismissive.

I believe this is also true for other disabled people who don’t communicate in what is considered “the normal way”.

The damaging attitudes toward different methods of communication hurt us not only when we want to be heard, but also when we want to participate, be social, or when we want to listen.

Attitudes toward communication reflect the big problem of non-disabled people regarding disabilities: there is too much “awareness” but too little understanding."

"we say “behavior is communication” a lot. because it’s true, and important.
it is also a vast, vast understatement.
because here’s the thing. communication? it’s behavior. it is, and it will continue to be, no matter how many times the powers that be try to teach us that language is a set of rules, a dictionary, a grammar-work book or a computer program. language is the way we change and move with our world, patterned and pulled through like fabric and thread.
so when we say “behavior is communication” we don’t just mean “when your kid has a meltdown, there’s a reason for it.” we mean “look at how your child moves, and where, and when. how do they move with people? how do they move alone? when are they still? if they sing and speak and pattern-repeat, what part of their environment plays the tune they’re talking to?”

Sometimes we make our patterns in different dimensions than most people–sideways not time-ways. jokes that are funny not because they say a funny thing, but because when you layer the first context you experienced for these words on top of the current context you’re using these words in, the combination of the two is hilarious. scripts that mean feelings, because the origin of the script is a scene full of that feeling. even scripts that mean feelings because the first time you heard them, you were feeling full of a certain feeling. sometimes it’s like we live a life full of songs reminiscent–your breakup ballad, wedding dance music, earliest church hymn…all these are the size and heft of our voices on repeat.

just because someone speaks the words you speak doesn’t mean that their language is like yours–we build our ideas with different materials, in different environments, for different reasons. the next time it seems like we’re going in circles with our mouths or our minds, remember: even as we circle, time is passing. now is different from one moment ago, which was different from two moments ago, and that means every time we do a circle, the circle has changed. maybe only infinitesimally. but truly. and sometimes circles can get wider, or narrower; sometimes it might look from above like we’re tracking the same path, over and over into the ground…but if you climb down onto the ground at our level, you’ll see we’ve been spiraling up to the sky, or carving down into the center of the earth.”

We need to change our definition of communication so everyone can join the conversation.

We need to find a way to listen.

1 comment:

  1. Amy Sequenzia, thank you. Your post was absolutely incredible and insightful. I cannot express enough how much your words meant and impacted my thoughts.


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