1:15am October 8, 2014

A long, long overdue (10 years) translation.

I had a meeting to go to. It was an important meeting. Things would be decided there that could set my life on a completely different course. My anxiety was through the roof, and therefore so was my catatonia. I could not type unassisted and I could only move in certain very specific ways without a good deal of assistance. Luckily, I had two friends with me, two good friends, to provide that assistance. But this isn’t about that.

This is about the pattern blocks. I used to carry old wooden blue pattern blocks in my pocket. They’re the diamond-shaped ones. I’d hold them, click them together, they were perfect. I’d had them since childhood, and they were absolutely wonderful.

Throughout the meeting, I kept handing my friends the pattern blocks. It wasn’t just handing them over casually. There was a sense of urgency to it. They picked up on the urgency, but they couldn’t make head or tail of what I was trying to say to them.

At which point they said possibly the most important thing you can say to a person who is nonverbal, has hard-to-understand speech, or otherwise having trouble getting across what they mean.

They said “I’m sorry, I know that whatever you are trying to say is important, but I can’t figure out what you mean, for the life of me.”

Even if I could have typed perfectly and quickly without laborious effort and having my arm held up at the time, I would not have been able to give them an answer. Because the thing I was trying to communicate, is not an easy thing to put into words.

Sometimes it takes me years to put something into words. Please note that the incident in question happened in December of 2005. It is now September of 2014. That means it’s been almost ten years, and this is the first chance that I’ve been able to communicate what I meant by something back then.

Please remember that, when you tell me that if I wanted to, I could make words out of my thoughts. Please remember that, when you tell me to hurry up and communicate something. Please remember that, when you tell me that I’m lying when I say I can’t condense my long posts into short posts without a good deal of effort, and often not even then. Please remember that, in other words, any time you’re tempted to doubt that I have a severe communication impairment. Being eloquent in words in some contexts does not remove severe communication impairments in other contexts, it only masks them. And it only masks them for people who are inclined to believe that communication is a single skill that you’re either good at or bad at, rather than the convergence of dozens of skills that any given person can be good at or bad at individually, and whose skills can change day to day, hour to hour, year to year.

So here is what I meant:

I am here. I am alive. I am giving this to you because it is a part of me. I want you to have a part of me with you because I exist and I am alive. And you exist and you are alive. And if you hold onto a piece of me, maybe we can make it through this. I have held it certain ways, clicked it on certain surfaces, to show you its physical properties and how they interact with my own physical, emotional, and cognitive properties.

I know that you are unlikely to be able to take all of that in. I know that you are both ACs, but you’re not like me in certain ways, and my communication through objects is not intuitive to you the way it would be to certain people. Hell, if I handed this to you in another context it could mean a totally different thing, and you wouldn’t know, and I get that. But for now, I need a powerful acknowledgement of my existence. I need to burn so bright during this meeting that they won’t be able to ignore me. I am scared. I am scared and I am asking for your help. I am asking to be distributed among more than one person, so that together I can be more than I am as one person. And I am asking you to see your connection to me, to see me, to see me at my core, where the fire burns, where our fires can burn together.

I am asking you to see who I am, reflected in the way I handle this pattern block, and the way I hand it to you. I am asking you to see me. I am asking you to shield me when I need to be shielded. I am asking you to help me find words when the words are not there for me. I am asking you to help me when I need help. I am scared, I am asking for your protection should anything go wrong. I am asking for you to stand in front of me should anyone start attacking me verbally or otherwise. I am asking you to tell them what I am thinking, when I am unable to do so myself. I am asking you to elaborate on the very short answers I can give by typing slowly with support while my body is trying to freeze up.

There are people who would have gotten every word of that, just from the way I handled the pattern blocks. The people I was with that night, could not. They could tell I meant something important. But they couldn’t tell what I meant. And fortunately, they didn’t pretend to know what I meant. People who pretend to know what I meant make communication impossible. My friends were honest with me, and while they didn’t know what I meant, they helped me communicate and advocate for myself perfectly.

But now I can say what I meant. So that’s what I meant. And that’s how much information can be carried in a single set of seemingly simple motions with a pattern block, or a rock, or a stick. It’s good to get to know what meaning an object has to the person, because that can factor in. But it doesn’t always. Sometimes an object has a specific meaning, sometimes that exact same object is a stand-in for something broader. Everything depends on context. And if you can’t understand, that’s fine. Not everyone can understand this stuff any more than everyone can understand speech or language. People more likely to understand are people who for any reason at all have been forced to use highly nonstandard ways to communicate at some point in their lives. The longer they’ve had to, the more likely they’ll get it.

So there. That’s what I meant nearly ten years ago. Please don’t tell me how easy I find communication. I may be good at it once I get there, but getting there is a long, tortuous journey sometimes.

TL;DR: Sometimes it takes me a long time to communicate something. About ten years ago, I handed my friends some pattern blocks in a way that had a lot of meaning to it – during a time when I could neither speak nor type. They didn’t understand the meaning, and told me so. I was unable to convey the meaning until today. That’s how long it can sometimes take me. Or longer. I wonder how many times autistic people do things like this and are treated as if we have no communication at all. I’m lucky I can claw my way into words for long enough to talk about this stuff.