as small as a world and as large as alone, Hello, I exist. I see you. I see that you exist...

2:07am April 30, 2015

Hello, I exist.

I see you. I see that you exist too. You are important.

Hello, I exist.

Is there anybody out there who understands my language?

Repeat in all known languages and frequencies.

Not languages like English, Tagalog, Icelandic, Mandarin, or Tsalagi.
Languages that each person speaks their own, or slightly modified versions of someone else’s.

The languages spoken by disabled people who — whether we can seem to speak or type fluently or not — have severe problems communicating in words, or understanding words, a large portion of the time. This is not something you can tell from the outside, especially if you’re not disabled. So don’t tell me it doesn’t apply to me because I used to talk and now I type so obviously words are no problem for me.

I’ve spent half the night in one of my brain caves, unable to get the words out that I meant, so writing other words instead.

But that’s not my point. Trapped as I feel right now.

You need to know something.

And that is that we have a million different ways of saying the same things:

“Hello. Is anyone out there?”

“Hello. I exist. I exist. Please acknowledge. I exist.”

“I see you. I see you. I see you. Do you see me?”

“I see you too. Can we see each other?”

These conversations take place across crowded institution hallways without staff being the wiser.

When they do their experiments that supposedly prove that random autistic people placed in a room don’t communicate with each other… you can bet that in some of those experiments, the autistic people are communicating right under their noses.

This is also something even autistic people get wrong. Many of us assume that we only learned to communicate this way because we had to — because of a severe communication impairment, whether receptive, expressive, or both, whether recognized as such by others or not. And we assume that people without those problems won’t learn to communicate in this way.

But this form of communication is natural for many autistic people, and once exposed to it, many autistic people will find it so familiar, from somewhere deep in their soul, that they will learn it almost instantaneously.

Have you ever heard an autistic adult tell the story — it has a million different forms for a million different people — of visiting a place meant for autistic children. School, institution, play group, whatever. And an autistic child who has never shown any detectable interest in other people before, suddenly runs up to the autistic adult and shows blatant interest in one way or another. I have had this happen to me more times than I can count, and I am no longer shocked by it, but lots of parents and teachers are.

“I don’t understand, he never approaches anyone, let alone with so much affection.”

But sometimes it’s worse.

Sometimes it’s “That’s not really affection, she probably learned it by rote somewhere, she’s incapable of caring about you.” (Said to me when an autistic woman a couple years older than me sat down next to me, snuggled up, rested her head on my shoulder, petted my hair, and said “Nice… nice… nice…”)
Anyway…

Hello. I’m here. I exist.

I feel like I’m trapped in a cave.

I can barely get the words out that I want to get out. I’m relying on a lot of other words, things I wanted to say other times and couldn’t.

So much of the time I lie here and think up what I want to say, and hope that one day those things I wanted to say will come to my fingertips at the right time.

I wish that the hello, I’m here, I exist, type stuff worked better over the Internet.

I would hand you a rock, I would let my body change its movements just slightly to acknowledge your presence, there are so many different ways to do it in person. So few ways to do it online, though they do exist.

“Does he speak the autistic language?” I remember being in a tiny mailing list for autistic people where most people there spoke a highly metaphorical version of English. There are so many “autistic languages”. My father spoke some of the same ones I do, and I didn’t even realize it until he was dying, and then after he was dead. He spoke to me through objects, and I understood so much more about him than I ever had. It was as eye-opening for me as reading my poetry was for him.

The photograph at the beginning of this post, with the amber ring and the orange and white agate stone, is, of course, related to this entire post.
I’m tired. I want to sleep. Not sure I can.

But I also feel trapped in my own head, have felt that way for days now, and wish I was around people who could see inside me, communicate without language, understand the tiny little differences in how I move and interact, and vice versa.

Finally, a poem by Jim Sinclair. It’s allowed to be reproduced as long as you credit Jim Sinclair and say that it came from an issue of Our Voice, the newsletter of Autism Network International:

Autispeak

This is the language we speak,
we who can talk without sound.
This is our voice in the silence
Where every word has weight, and no thought is ever lost.

This is the language we speak,
we who embrace without touching,
This is our dance without bodies
Where every touch has meaning, and no glance is ever wasted

This is the language we speak,
we who can see without looking.
This is our star behind darkness
where velvet rainbows sing, and no tear falls unseen.

This is the language we speak,
we who can float outside time
This is our home beyond nowhere
where shadows’ footsteps fall,
where memory echoes from the future,
and comfort flows back from the past,
where smiles have no need for faces,
and warmth breathes from the frozen places
This is our source, our destination, where every song is heard, and no soul shines unknown.