Just Stimming…

A land we can share (a place I can map)

The Talk

with 15 comments

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.

 

 

Written by Julia

January 17, 2015 at 6:01 pm

15 Responses

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  1. Thank you. This is so powerful, and helpful. I love the way you start in the very present, go through the backlog of other, similar conversations, and then add, almost casually: there were years when doctors and parents knew…but no one told me. The conversation needs to start there, is what I think you’re saying, and someday I hope it will.

    Carolyn Ogburn

    January 18, 2015 at 7:24 am

  2. Very interesting post. Good to hear about things from an autistic woman’s perspective. It’s hard for you all to talk about it–though the men you date probably appreciate you being able to talk directly about it. You would much prefer, like most women, that men just “got it” without you having to talk directly.

    Autistic men often have serious sexual problems and it’s even harder to discuss with women because they don’t like direct convo generally about sexual topics. Then there’s kino and sexualization inhibitions and our frequent failure to meet women’s expectations. Blogging about this.

    theasdgamer

    January 18, 2015 at 12:02 pm

    • theasdgamer, the only time Julia used a pronoun in this post, she said “she.” This indicates that the new person in her life is a woman. Also, if you weren’t sure you could look back in her posts and she references being gay in some of her previous posts. So Autistic men’s problems, and whether men would like to date Julia because she talks about things directly, are not really relevant.

      It sounds like you have had a lot of tough dating experiences and I sympathize, it’s awful to feel like you can’t discuss important issues with the person you’re dating. But you’re talking about women like we are an identical group that all acts the same (“women don’t like direct convo generally about sexual topics”). To be honest, I would guess that it probably affects your ability to get along with female friends and women you date, if you stereotype women like that and don’t treat us as individuals.

      Also, you’re doing the same thing by assuming that Julia dates men because she is a woman, when if you read her post carefully instead of assuming, you can see she dates women. I know you must have made this assumption unconsciously, but Julia said “she” not “he,” and it kind of sucks when you’re gay, you’re open about it, yet people just ignore that and go on talking to you as if you are straight.

      Amanda Forest Vivian

      January 18, 2015 at 12:36 pm

      • Not everyone notices things like pronouns..I know when i read i don;t even notice it half the time..Maybe he is the same and just doesn’t see it..I doubt he meant anything by it and i can see it being annoying but please understand that for those of us who don’t notice those things it can happen alot with no offense meant.

        Sorrior Dragneel

        January 18, 2015 at 3:54 pm

        • More than not noticing pronouns, there’s some making extremely presumptuous, categorical generalizations about how things are for autistic men vs. autistic women going on…. That’s an issue that goes deeper than not being able to notice pronouns, and it’s more than just annoying.

          chavisory

          January 19, 2015 at 10:21 pm

        • I saw your comment a few days ago, but I was struggling to respond to it, because it doesn’t make sense to me based on what theasdgamer said. His comment is very much about how he thinks straight men and women interact with each other; it’s not like he just didn’t notice whether she is gay or not. He wrote a whole comment that’s very specific to the idea that she is straight.

          I get wanting people to be nice to each other and not take things the wrong way, and I wasn’t trying to be mean to theasdgamer, but I don’t think “he didn’t mean anything by it” or “no offense meant” really…is relevant? I’m sure he wasn’t trying to be mean, but that still doesn’t make it nice to have someone assume so much about you just because you’re a woman, and I feel like everyone involved would be happier if they didn’t stereotype.

          Amanda Forest Vivian

          January 21, 2015 at 1:27 pm

    • It’s really, really not that I wish other people just “got” it without having to say a word. It’s that I wish people tended to have more of an inclination to take me seriously when I say these things very straightforwardly. “Don’t tickle me. No really–don’t.” “I can’t do that. No, for real.” “Yup, this is actually the way things are in my life.”

      It’s the tendency for people–men often, but not always–to try to undermine my understanding of my own life to make themselves feel better, or argue me out of self-knowledge that’s confusing to them and not me–that makes me reluctant to try to have these conversations. Not that it’s intrinsically so hard for “you all” to have these conversations.

      chavisory

      January 19, 2015 at 11:46 am

      • “I wish people tended to have more of an inclination to take me seriously when I say these things very straightforwardly” Yes! Such simple things, such as “please do not clap around me” or “get my attention by saying my name, or ANYTHING, but please do not poke me”, that go ignored or, worse yet, mocked. And then people don’t understand when these simple things lead to a meltdown (I use this word but some people don’t like it; I just mean that “thing” that happens when the triggers take me past the safe threshold).

  3. Thank you. I imagine someone has already told you before, but just in case, this is very helpful to those of us with children on the spectrum. Children who cannot speak and avoid touch and respond differently to pain. Knowing how hard it is for you, and awkward (to share and have this sensitivity) it can be makes me look at my son’s challenges and try to remember, he didn’t choose this. I just have to choose how I respond to the challenges.

    kirizar

    January 18, 2015 at 6:51 pm

    • This. I am another parent who would like to say thank you. Your post not only helps me understand some of my child’s challenges better, but also how to communicate information to him about his differences so that he doesn’t think that he is “bad.” (I cried reading that part.) Also helps in figuring out how to help him know how to initiate these kinds of conversations in his own life in the future.

      Cat

      January 20, 2015 at 9:40 am

  4. Reblogged this on anarchafemautisticwarrior.

    anarchafemautisticwarrior

    January 19, 2015 at 6:02 pm

  5. I am so glad you are writing. That’s all I can muster. I am SO glad you are writing.

    jess

    January 21, 2015 at 2:18 pm

  6. I have been having part of this conversation for years. That my body didn’t do what was expected was obvious long before last year, when we realized that the girl who was “shy” and “sensitive” and whose brain shut down when things got overwhelming so all she could do was sit with her head down to try to hide the tears pouring down her cheeks, who basically only spoke to teachers and when doing a set activity, and who, after finishing college and being chronically ill and having a mild disability, actually has high-functioning Autism. I’ve explained the motor-neuron disease affecting me lower body and it’s various effects (I walk with canes or use a wheelchair, I have brisk reflexes so if you startle me I hit the ceiling, common in all with that disease but the ASD likely makes it worse). I finally have the words to explain that I have a condition with a long name even I can’t remember, and I’m good with those, so as I try, at 36, to go to some of the activities my church group for my age has that aren’t study or the types of service where I can concentrate on building something or some other task as an outlet, I can finally say “I have face-blindness, it’s neurological, so I won’t remember your name and if you meet me in public (rare since I can’t get out much) you need to tell me your name and that you know me from this group.” When a volunteer thing wasn’t what we expected and there was nothing for a disabled person who can barely talk to adults to do in a mass of teeming children (we expected teens to start and didn’t know they’d all be playing dodgeball or basketball, which I can sometimes almost follow on a TV screen but is simply too many people moving in a way my brain can’t process). I did manage to tell the person who had the insight to get meto the bathroom (I couldn’t without guidance) and stand behind me and wait for me to get my sentences out in their entirety before asking something else, and the pastor who’d seen my escape, about my recently being given a possible diagnosis for what they used to call Aspergers… I can explain the celiac disease and I’ve explained ADHD. I’ve explained to my college notetakers (people with issues like ADHD could, at my college, have a designated person with a notebook that creates a carbon copy) that Disability Services authorized me to have them because of a learning disability and because I had a documented chronic illness that made me miss classes, and that I would be there every time I could but was grateful that I would have them as a back-up. And same conversation with professors of course. I’ve explained a few things about my ASD symptoms to others in the group as they came up but am still finding the words. So thank you for writing about your experiences. I’ve spent the decade since finishing college mostly in my home, caring for my severely disabled mother (advanced motor-neuron disease, genetic, non-fatal, but she’s a paraplegic- it’s progressive) and lost in my reading and crafts and studies. With my ohter disabilities this one slid under the radar (even though I would need to go someplace quiet with a book when my grandparents, aunt and uncle, and the 2 cousins I’d known all my life were all gathered…)

    Jennifer Bailey

    January 23, 2015 at 1:23 pm

  7. Reblogged this on linda lou and commented:
    Here are some things about me, too.

    lindalounelson

    January 27, 2015 at 9:37 am

  8. […] Джулия написала в своем блоге прекрасную статью о разговоре, который она планирует провести с женщиной, с которой […]


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