Sunday, March 27, 2011

Self-injury, complicated realities, and Big Emotions

[TRIGGER WARNING for discussion of self-injury, obviously.]

Tonight, I'm thinking about Sam.

Sam is a real kid, but he isn't really named Sam. I worked with him last summer. He was about eight years old and nonverbal, and he often seemed very frustrated with the language barrier between him and other people. He was small and blond and energetic. Oh, and he bit himself. A lot.

Sam would put his fingers in his mouth and just chew, until layers of skin were missing from the pads of his fingers. The staff worried about infection and permanent damage, and tried their best to discourage this habit. But I was more than worried. Whenever I saw Sam chewing on his fingers, my heart beat faster and my stomach felt sick.

I'd felt this horror before. In high school, I had a few friends who cut or bit or burned themselves, and I found this very difficult to deal with. The same horror that I felt with Sam would rise up inside me, with the same result – I couldn't let go of my Big Emotions and just talk with my friends, person to person, about what they were going through. This meant that I often handled the issue in a really clumsy way. I would assume that if my friends hurt themselves, it meant they were feeling certain things, and I didn't quite understand when they tried to tell me that my assumption was wrong. Worse, I would sometimes get so caught up in my Big Emotions that any discussion of self-injury ended with me crying about my feelings, rather than supporting my friends.

Although Sam and I never had a conversation, the same clumsiness started to creep into my work with him. As I got caught up in my horror, I forgot how to relate to him as another person, and this meant I didn't work with him as well as I could have.

Fortunately, Sam and I had a breakthrough. One day, as we sat in a circle watching some other kids practice their handshakes, Sam was chewing on his fingers. I gently pulled his hand down, and then gave him my hand to play with instead. By that time I'd decided that Sam didn't bite for the sake of biting. He did it because of how it felt – on a sensory or emotional level, I couldn't tell. At any rate, I knew he wasn't going to bite me. And he didn't. He turned my hand over and investigated the cracked spots on my fingers, where I had picked at the skin.

It wasn't until I saw his raw fingertips right up against mine that I realized we might have something in common.

You see, I kind of, sort of, self-injure too. I don't do any of the things that people think of when they hear the phrase "self-injury." I compulsively pick at my skin, sometimes to the point of bleeding, scabbing or scarring. This is essentially a stim – I'm driven to it, and I find it a very absorbing activity. A tendency toward acne and skin irritation facilitates this by always providing me with some blemish to pick at.

I've heard that picking at one's skin is generally thought of as a "secondary behavior" to more serious forms of self-injury such as cutting. For that reason, I'm hesitant to write about myself as someone who self-injures because I don't want to appropriate other people's experience. But thinking that other people's behavior might come from the same need as mine does helps me understand, and even just making the connection helps me interact with people in a more human, less freaked-out way.

A lot of people bring up self-injury when they are talking about how horrible autism is. They'll give examples of autistic people harming themselves, and use those to fuel their argument that autism shouldn't exist. Amanda wrote about that in her excellent post on disability-related logical fallacies (scroll down to "Shocking Behavior Fallacy"). Basically, people take the shock and discomfort that they feel when contemplating self-injury, and turn that into a prejudiced argument.

Well, I have a lot of friends who self-injure sometimes, both autistic and not. I have found that if I want to help them, listening to what they have to say works far better than jumping all over them with my shock and discomfort. What I learned, once I started listening, is that self-injury means different things to each person. Some of my friends do it in a stimmy way. Some of them do it to cope with stress. Some of them do it for the sensory input. Some of them have found ways to do it that they find healthy and safe. Some have done themselves permanent damage. Some have become addicted and are trying to quit. Some of them would like to stop doing it, but can't make it their top priority right now, or don't have the spoons to give it up. Actually, that last one is pretty much how I feel, too.

My point here, if I have a point, is that self-injury is a really complicated issue, both in general and as it relates to autism. It's different for everyone, and no one is helped by that one-size-fits-all, knee-jerk horror that I used to feel whenever the topic came up. Because that horror wasn't about my friends who were self-injuring – it was about me. And viewing someone else through the lens of your self-centered horror is not a good way to help that person.

One day last summer, when my regular attempts to get Sam's hand out of his mouth had failed, I handed him my prized stim toy, a rubber ball filled with red glitter. Watching him turn the ball through his cracked little hands, I felt the same connection to him that I felt when he held my hand in his, touching my raw patches with his own. After that, I knew there were two ways that I could react to Sam. I could recoil from him, scared of all the ways in which he was Other. Or I could hold his hand and remind myself of all the ways that we are the same.

Thursday, March 24, 2011

What Accessible Communication is Not

If you speak ironically, and then refuse to clarify whether a statement is sarcastic or genuine, your communication is not accessible.

If you are unwilling to explain a concept when someone takes longer to understand it than you might, your communication is not accessible.

If you are asked to slow down, to repeat yourself, to define a term that is not understood, or to stop joking and speak seriously, and you meet this request with contempt, your communication is not accessible.

If you deliberately mislead anyone for the purpose of amusing yourself or others with their gullability, your communication is not accessible (and you are also an asshole).

I'm tired of people who fill every conversation with impassible cognitive barriers.

I'm tired of having to use all of my brainpower just to figure out whether I am being manipulated or told the truth.

I'm tired of the idea that believing another person is a character flaw, an invitation to victimize, a sign of an embarrassingly unsubtle mind.

I'm tired of the assumption that because we're all at college, we can all speak on this distorted and sophisticated plane of half-truths and true lies, and surely we will all understand each other because anyone too dumb to navigate this level of language would never have got here in the first place.