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.

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.

Recommended Reading (and Donating)

I have a lot of links to talk up and that means it's time for recommended reading!

Asher wrote Critical Condition about a clinic in San Francisco called Lyon Martin. Lyon Martin provides respectful health care on a sliding scale to women and trans people. One of my friends gets hormones from Lyon Martin, and it has really made a difference for them to have access to this level of care. But Lyon Martin may have to close, and they're asking for donations so that they can stay open. If you can afford it, please donate on their website!

Amanda, Julia and I are starting a new disability group blog! It's called LOVE-NOS, and it's filling the hole that FWD left in our lives. If you want to be a contributor or write a guest post, please let one of us know. All the posts that are currently up there are great, and you should definitely check it out.

Amanda and I also started bad brains wearing clothes, which is kind of silly but also awesome. It's basically a brain disability fashion blog.

Finally, please read Insanely Cruel, which is everything I wanted to say after the Giffords shooting even though it was written before the Giffords shooting. It's about the assumption that anyone who would kill a lot of people must be "crazy," and how that comes from people's unwillingness to acknowledge their own capacity for evil, and how it's really ableist. This piece is short, too, and it's really important and you should just go read it.

Quiet Hall Woes

When it's midnight on a quiet hall and your next-door neighbor, who is ill with Random Fever Illness and has mostly lost her voice, knocks on your door and asks politely whether you and your guest will please stop singing along to YouTube videos because she can hear you, the correct response is a quick apology followed by compliance. The correct response is most emphatically not to turn to your friend and burst into giggles, then turn back to your next-door neighbor and say "We half-expected this."

A woman with Multiple Chemical Sensitivity told me once that people sometimes like to "test" her by wearing scented products around her to see whether they will trigger an athsma attack or some other kind of reaction, and then when they inevitably do, these people will say something like, "Sorry, I worried that might happen."

If you were aware of the possibility of that happening, WHY would you do the thing that causes it to happen?

Okay, some background on next-door-neighbor girl, who I'm going to call Judy. Judy is a very nice person and is usually really pleasant to me. But she does enjoy lound noises, and this means that several times this year, I have had to knock on her door and ask her to turn down her music/ flute playing/ midnight singing. And she always complies with my request, as she did tonight, though sometimes not without passive-aggressive comments. (To be fair, I have to add that I was definitely passive-aggressive earlier today when I responded to her friends' shrieks of laughter by asking if they were okay.)

And I had sort of thought that Judy's repeated rule-breaking and noise-making was just done out of her desire to hear loud sounds and not with any thought of me. I didn't judge her for this because everyone sometimes does things that they think are fun without considering what the implications will be for other people. But when she said to me -- through giggles! -- "We half-expected this"... That kind of changed my mind.

Because if you're doing something and thinking "This will probably make the person living next to me feel so bad that she is moved to ask me to stop," isn't the right response to refrain from doing that thing?

This might be unfair to Judy for a number of reasons. Probably the most important reason I might be shortchanging her is that, while I have asked her on several occasions to turn down her noise, I have never explained my disability or sensory issues to her. I have never told her that last year I was trapped in my room for four hours because loud music from the floor above messed with my brain so much that I couldn't remember how to get out. I have never explained to her that even a faint noise, even a constant noise, even a noise that she would easily tune out can make me feel like six kinds of shit. I've never told her that from my room I can hear the house fellow's baby crying and cars backing up and people taking showers and pulling paper towels from the paper towel dispenser, and layering her singing over all this -- at midnight, when I'm sick and exhausted and even more lacking in spoons than usual -- is just too much. I probably should tell her all this, and maybe I will, but at the same time I feel like I shouldn't have to.

Because this is a quiet hall and I chose to live on a quiet hall for a reason, and that reason is that in a quiet hall you are required to keep noise down to a level where it can't be heard in the hallway or other rooms. And you're required to comply with requests to turn down your noise.

I feel like people who want to be loud at all hours but still choose to live on quiet halls are like non-disabled people who use disabled parking spaces. They can live anywhere they fucking want; I can only live here.

Community: I don't think it means what you think it means

I've been noticing something that's been bothering me a lot, and that is the way the phrases "autism community" and "autistic community" are used.

I find that when these phrases are used, in all sorts of media, they tend to refer to parents, siblings, grandparents, friends, and lovers of autistic people, as well as doctors, therapists, behaviorists, staff, and other professionals who work with autistic people. Who is not likely to be consulted when some journalist or blogger needs the perspective of "the autism community"? Actual autistic people.

Guys, I think this is a problem.

For those of you who like analogies (and I really do), imagine if whenever someone used the phrase "the gay community," they were actually referring to PFLAG, a group for straight allies. That would be not so good, right? Because as lovely as PFLAG is, they are by definition mostly straight people (not that gay people can't be parents and friends of other gay people, but I don't think that's what PFLAG is for) and therefore not a good choice to be the voice of "the gay community."

But actually, the way the phrase "autistic community" gets used is even worse than that hypothetical situation. Because PFLAG is at least genuinely supportive of gay rights. On the other hand, a lot of the parent-and-professional groups that get referred to as "the autistic community" really want autism -- and therefore, autistic people -- to go away forever. In my opinion, this is not good community-building sentiment.

I think this is fairly self-explanatory: if you want a community to be eliminated from the planet, you are not part of that community. You are not even an ally. Hell, why would you want to be part of that community anyway? You obviously don't like us very much.

If you're reading this and wondering whether it really matters how people use the phrase "autism/autistic community," let me tell you what I believe the misuse of this phrase does.

It perpetuates the idea that autistic people as a group can't represent ourselves and need non-autistic people to speak for us. It centers the concerns of neurotypical people in discussions of autism, when really it is our needs, our concerns, our rights that should be prioritized. It means that there are people claiming the support of "the autistic community" for positions that a lot of autistic people find morally offensive. It's one of the tools people use to keep our voices from being heard. In other words, yes, it matters. This is really bad news.

First Encounters

[This was written for my Introduction to Special Education class. The essay prompt was "What is your first memory of disability?" I don't think it's very good but it's the first time I've ever written all this out, from beginning to end.]

Last year, I had an experience which I think is relevant to this essay. I was filling out a form for a medical appointment, and was utterly bewildered by the question "What is the least you have ever weighed?" The correct answer could only be "6 lbs, 7 oz," but at the same time I doubted my birth weight was what the doctor wanted. I wrote it down anyway, because it was the only honest answer it was possible to give.

Similarly, I'm finding it difficult to identify my first experience with disability. Technically, my entire life is an experience with disability. The process I'm going through now, as I struggle to focus on the "spirit" of the essay prompt and discard its literal meaning, is an excellent example. I can’t pick my first memory of disability, but I can tell you about elementary school. I think that might be what you want.

The first time I knew that my brain was irregular was the day in first grade when I looked around the playground and realized that no one else was sitting alone. After this realization, I ran to join another group of children immediately – not prompted by innate desire, but by fear. What did they know that I didn’t?

Much of my life has been spent answering that question.

I remember walking down a dimly-lit hospital hallway when I was four, away from the specialist who analyzed my gait. I remember the MRI I got when I was ten, and the doctor who frightened me by telling me that MRIs were for people who had things wrong with their brains. I remember being sedated in order to go to the dentist.

My parents tell the story about how my baby sister’s screaming aggravated me so much, I asked them to put her outside. They tell me about how I hid under the table in kindergarten. They tell me about the doctor who told them that I was a genius, and the doctor who told them that I might never go to college, and the doctor who told them that I was perfectly ordinary and the problem was with them, their selfish need to consider their child disabled. My mom tells the story about how when I was seven years old she would ask me to spell words for her.

I had facilitated play-dates. I had shadow tutors, behavioral intervention. In occupational therapy, an energetic woman rolled exercise balls over my body and encouraged me to play on swings. At school, teachers took my books away and told me that recess was for socializing. I tried to play soccer but was terrified of the ball, of the other team, of my team. I was frightened of the lofts in my private school classroom, so my father took me “lofting” when school was over, slowly climbing the ladder until my fear subsided. For years I went to social skills training with a group of other misfit girls. We watched videos. We watched Jake demonstrate the right way to comfort a friend, the wrong way to comfort a friend. We learned how often other people lied.

I was bullied subtly – not with name-calling, but with observations. “You never look at things.” “You daydream too much.” “You’re weird.” “You should see a psychiatrist.” “You suck at sports.” “People call you a freak.” These simple statements terrified me. I was doing everything wrong. They could see. They knew.

When I was nine, my mom sat me down and gave me the name for the strangeness in my head. Three letters to explain everything – the second, parallel education I’d been receiving; my fear of loud noises, of soccer balls, of new foods; the painfully obvious asynchrony between me and my peers. It was like learning my own name. I cried, not because I was unhappy but because I was so profoundly relieved.

You are also my brain: adventures in (in)(ter)dependent living

I’m at home right now and thinking, as I always do when I’m at home, about my brain.

I use the term “prosthetic brain parts” to refer to any way of externalizing a function which my brain is supposed to do but doesn’t. For example, organization. It’s hard for me to keep even really basic stuff organized, hence my flow chart for leaving the room. (I’m planning a sequel soon which will tell me how to go to bed, because when I stay up too late and get too tired it becomes very difficult for me to remember how to do that.) Other prosthetic brain parts include timers and alarms, which help remind me to transition between activities.

But people can also be prosthetic brain parts. This is the most crucial difference between home and college, and it’s why I’m finding (semi-) independent living at college so difficult. For example, here’s how my executive dysfunction affects my eating, at home and then at college:

At home, Dad generally yells “Come and get it!” after he has finished cooking dinner. This is the first cue which tells me I should get up and go into the kitchen. If I fail to respond to this, someone will call again: “Zoe! Dinner!” This is usually enough to get me to the table. If I am still stuck, all I have to do is hold my hand up and someone will help me to my feet. My girlfriend is visiting with us right now; if she sees that I am stuck, she will call out helpful instructions (“Put your feet on the floor. Now stand up.”).

At college, I don’t forget to eat, as such, but I do forget all the steps involved in getting food (as I forget the steps involved in most things). If I get stuck along the way, no one will come unstick me – I have to unstick myself. The anxiety and effort involved in keeping the steps straight and keeping myself on task can lead me to skip or delay a meal rather than make myself go out and get one. Or I might do dubious things like eat a “meal” of chips and candy from the vending machine. Or I might try to reduce the steps by eating at a restaurant or ordering food delivered, which gives my brain a break but strains my wallet.

Basically: at home there’s no chance of not eating the meal. No matter what happens, I will eat. At college, there is a chance that I will intend to eat and then fail. And just to add another dimension of difficulty to the situation, the possibility of failure and the uncertain outcome of my efforts heighten my anxiety. Remember, I’m already feeling anxiety because of forgetting the steps and having to unstick myself. The more anxiety I feel, the more difficult it is for me to perform advanced brain functions like unsticking myself, and thus the failure becomes cyclical.

There are a lot of scenarios that work out like this. At home, If I’ve been stuck in the bathroom, sitting in the sink not doing anything when I should be getting dressed, someone will knock on the door and ask me if I’m stuck. I can even ask someone to hang out in the bathroom while I’m brushing my teeth and putting on my clothes, in case I get stuck again. At school, I have to be the one to unstick myself. Following simple instructions is easy; unsticking myself is very hard.

At school, during periods of stress, I start to get a sense that I am jerking myself through my life by brute force alone. Every step feels deliberate and requires an intense effort. At home, I no longer have to act as my own drill sergeant just to put on a pair of shoes. I don’t have to watch myself so vigilantly, because other people are there who will help me out.

I feel as though I’m starting to repeat myself, but this is hard to explain, and I want to explain it perfectly. Home is easy. College is hard. This is why.

Now what do I do about it?