The Talk

There’s a new person in my life, so we’re having the how-my-body-works talk.

It’s a conversation I don’t think nondisabled people have. It goes like this: this is my body. This is how it works. It moves this way. These parts of can feel, and these can’t. This will hurt me, and this won’t. I want you to know these things. This is my body, and this is me.

“We should have the conversation about physical contact, but I don’t know how it goes,” she said.

“Well, fortunately, I’m really good at this conversation,” I said. “I have it all the time.”

I’ve been thinking a lot about the kinds of intimacy my disability forces me into. Most people don’t have to brief half the people they meet on what they can and can’t see. But the truth is that my body works like yours right up until it doesn’t, and if you aren’t ready for that, you could get hurt–or I could. So I have this conversation with dates, new doctors, friends, coworkers who are filling in and giving support. I have had this conversation on the grass, in bed, in exam rooms, on kitchen chairs. It goes like this: I have autism. That means my brain and my body have a hard time talking to each other.

Sometimes I give examples: I move funny, and I can’t always control it, and maybe most importantly, I can’t always start moving when I want to. Sometimes my skin can feel things; sometimes it can’t. Usually it comes and goes in patches. A lot of the time, I can’t figure out how to move. Sometimes I notice pain, and sometimes I don’t. Sometimes my body tries to pull itself apart. Sometimes I know in advance when I’m going to have a bad body day, but usually I don’t until I’ve dropped something all over the floor.

Some of the conversation is important: I feel pain differently, but I do feel pain. I can’t feel my body and use words at the same time. Being around other people is physically painful, always, every time, but sometimes it’s worth it. I don’t always realize I’m hurt or sick, but every time a doctor has found a part of my body shredded to bloody pieces by my own fingertips, it’s meant that there was something seriously wrong happening underneath–my hands knew before my brain did. Before I can stand up, I have to find my legs, but sometimes I get stuck. Here is how to prompt me. Here is what kind of power having those passcodes means.

Some of the conversation is weird: my body language doesn’t work like yours because I may or may not be able to move those muscles at any time–so I need you to look at me and make different assumptions. I move typically, until one minute you look at me and you see the way my hands hold a cup like a toddler, until my body twists and jerks back in joy, until I don’t move at all. I was born functionally blind, and then I gained a lot of vision, and then I lost some of it again, and now there are a lot of things I can’t see, for two different reasons. If we go into a new room, I will need you to tell me where to sit. I will ask to borrow your eyes, your hands, your brain.

It’s not a big deal, I say, and I need it to not be a big deal to you.

These are conversations I am good, or at the very least practiced, at having, but they still make me want to crawl out of my skin. Insisting on having these conversations, instead of pretending my body works in all the standard ways, means taking up space and focusing attention on myself as a disabled person. We aren’t supposed to do that. And because my disabilities aren’t necessarily visible, are easy to miss or to misinterpret at first as something else, my conversation partner might not understand why I want to have this conversation in the first place. It can be awkward and fraught–please understand this thing about me, please understand me–and there’s not much precedent. There isn’t a standard social script for this. There’s a temptation to just learn to avoid the need for the conversation entirely–just blend, just let yourself get hurt, just avoid other people entirely, rather than subjecting them to a litany of all the things that make your body different.

I still feel that way, sometimes, and sometimes I think I can get away with not having the conversation. And I can, right up until someone reaches out to me, and in the time it takes my brain to process what’s happening, decide to reciprocate, and send the necessary signals down and out to my body to start moving, the other person has paused, seen my lack of movement, and withdrawn, shuttering.

“Here is the thing about me and hugs!” I write, later. Here is the thing about me and touch. Here is the thing about me and my skin. Here is the thing about me and my eyes, me and my hands, me and my disability, me and my body. Here is the thing about me.

It’s a weird conversation. But I wouldn’t trade it for the years when I didn’t know how to have it. There were whole years when doctors and parents knew that I couldn’t see, that my leg muscles were knotted and my torso was floppy and my body didn’t listen to my brain, but no one told me, and so I thought I was bad.  My body didn’t work, I thought. I didn’t work. But that wasn’t true–it’s just that no one had taught me how my body worked, let alone how to talk about it. You shouldn’t have to be a stranger from your body. And I’m not, anymore, and I don’t want you to be, either.

This is my body, I say. Look what I found out. Look what I know now.

I want to share this with you.