Sunday, December 26, 2010

I Know Who Baby Knauer Was

[Trigger warning for discussion of (historical) violence against disabled people.]

Finals week was a weird time to be knocked down by history.

I'd been researching and writing a final paper for my German history class (weeks overdue) on a topic that I've studied before: disabled people in the Nazi regime. Really sad, grim stuff, and I knew that going in.

But here's the thing that I've learned from three years of genocide studies and a lifetime of Holocaust-related neuroses: you know that saying? The one every history major has heard several thousand times? That one death is a tragedy, and a million deaths is a statistic?

Well, it's kind of true.

Not that you can't feel sad about a million deaths. But for me personally, there's something abstract, something incomprehensible about deaths that are presented only as numbers. One death is easier to understand, because all around me are individuals I love, and I know how crushed I would be if one of them died. It's somehow easier for me to conceptualize a death if I know some details about the person who died: their name, something about their life story.

The person I knew as baby Knauer lived for such a short time, there was very little of his life story to tell. Until finals week, I didn't know that story. Now I do. And where before I had been outraged at the injustice of baby Knauer's death, now I feel utter grief.

Let me explain.

Probably everyone who has done research on the Nazi 'euthanasia' program knows about the Knauer case. The basic facts are: a man who for a long time was only known as Herr Knauer petitioned Hitler to have his infant child killed after his child was born blind and with some physical deformities. Hitler sent his personal physician, Karl Brandt, to assess the baby. If Brandt deemed the child "unworthy of life," he was authorized to have the child killed. Brandt decided baby Knauer should die, and baby Knauer did. Soon after this, the children's killing program began, and then the T4 adult killing program. Baby Knauer was the first victim of Nazi 'euthanasia.'

Then, in 2007, historian Ulf Schmidt published a biography of Karl Brandt. In this biography, Schmidt revealed the details of baby Knauer's life, saying that he didn't feel it was right to "place the justifiable claim of the parents for anonymity above the personality and suffering of the first 'euthanasia' victim."

In my school library, I found Schmidt's book and read the section on the Knauer case. Here's what I learned:

Gerhard Herbert Kretschmar was born on February 20th, 1939, in a village called PomĪ²en. He was blind, and "lacked one leg and part of an arm." Some doctors speculated that he was "feeble-minded" but realistically they probably couldn't have known this at his age. His parents, Richard Gerhardt Kretschmar and Lina Sonja Kretschmar, believed strongly in Nazi ideology, and his father wanted him dead.

Schmidt writes that Richard Kretschmar took Gerhardt to the Leipzig Children's Clinic "in the spring of 1939" -- when Gerhardt was just one or two months old -- and had him institutionalized there. Werner Catel, the head of the clinic, later testified that Herr Kretschmar had wanted him to kill Gerhardt right then, but Catel refused because of legal concerns. (As an aside here, Catel took part in the T4 program later, so when he refused to kill Gerhardt he didn't have any moral problems with infanticide -- he was just concerned about going to jail.) When Catel would not kill Gerhardt, Herr Kretschmar or perhaps one of his relatives petitioned Hitler directly to end the child's life. Hitler sent Karl Brandt to examine Gerhard and decide whether he should live or die. After confirming that Gerhard was blind and physically disabled, Brandt authorized the clinic staff to kill the baby, and Gerhard was murdered on July 25, 1939. He was five months old.

Once I read those names and dates, I couldn't get them out of my head for days. It's strange to think that these few details -- Gerhard's name, his assigned sex, his birth and death dates -- would change my perception of the case. I wish that it didn't matter, that I would feel just as much grief for a nameless child murdered 70 years ago as I would for a named one, but somehow the name is important to me. Today, when parents continue to murder their children, when people call themselves part of the disability community while dreaming of a world without us, it seems vitally important to hold on to that name.

Friday, December 10, 2010

Recommended Reading: Finals Week Edition

Okay, so it's finals week and I want to write a post but I don't have time to write my own post so instead I'll link to other people's posts. These are all things I've found recently that I think are important and wanted to share. The "recommended reading" post itself is in the style of FWD-Forward, which does a similar link roundup every weekday and which I would most definitely recommend.

First, Amanda recently did a series of posts on the concept of "social skills" that changed the way I think. They are collected here:
Social Skills Don't Exist

Secondly! My friend Asher wrote a Trans 101 that explains sex and gender identity without using transphobic language.
Not Your Mom's Trans 101

I found this brilliant essay by Cal Montgomery a while ago. It deals with a lot of things, but mostly the way that people talk about dependence as it relates to disability.
Critic of the Dawn

Finally, some takes on aspects of Glee that have annoyed the fuck out of me recently:
Dear Ryan Murphy: I have words about Glee
Glee: A Very Glee Christmas

Saturday, December 4, 2010

Guilt-allaying things people tell me over the internet

So I think I've mentioned before that I deal with a lot of guilt due to the amount of late work I turn in in my classes, or the fact that I can't do all my reading -- various lapses of academic performance. But lately people have been saying awesome things, on chat or in emails or in blog posts that I read, that help me put the guilt aside for a little bit. I save these communications, and I take them out and look at them later, and I remind myself that people love me and I am okay.

"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."

“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend

"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad

"All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you."
-Amanda, in an amazing post about executive dysfunction

Thursday, December 2, 2010

I am a limited resource and I don't know what to do about it

I’ve found a new way to be productive and it’s exhausting me.

I’m not sure if it’s more or less exhausting than the potent combination of guilt and anxiety produced by procrastination – probably it’s just a different kind of draining.

Today, after two hours cloistered in a library cubicle, working diligently on a late paper, I got stuck on the stairs to the ground floor. A girl passed me on the landing. She said something , and I couldn’t hear what. I had my headphones on, but with the cord yanked out, so I just heard muffled quiet, and felt pressure. The girl glanced back at me a few times. I remembered how to climb the stairs.

Outside of the library, I stood rocking on my heels, getting cold, blowing out clouds, stimming out on stars. It took me a while to gather the energy to walk to my dorm. I felt I’d hit some kind of wall. I thought, I have come to the end of my brain. In high school I had some arrogant idea that my brain was somehow infinite, and only my time was limited.

The moisture on the ground was turning into frost, creating a sparkling effect that first dazzled and then overwhelmed me.

I’m pretty sure I used the last of my spoons to get to my room, or perhaps the penultimate spoon. I have a backlog of German homework to do, but I can’t do it anymore, so now I’m calculating how early I have to get up this morning, how best to bury and wrap my alarm to keep my sleep-deprived self from simply shutting it off and giving up. I’m at that point where I’m so tired that the steps between me and sleep – taking things off the bed, turning off the light, setting and wrapping the clock – seem insurmountable.

So I’m not sleeping. I’m thinking about thinking, worrying about worrying, writing about writing.

Saturday, November 20, 2010

In Which I Am Obsessed With Spies

I like to imagine that I’m a spy. In my fantasy, I travel to interesting places to find out important things. I am elegant and competent. I wear great clothes and I always have a witty comeback, like James Bond but without the sexism.

I can lie perfectly. I can move silently. I can pick locks, hack computers. I can navigate a party with ease, picking up revealing information from the chatter around me. I always get the girl. I speak thirteen languages and have twenty false IDs. When I steal the secret documents from the evil corporation, I don’t leave a trace. I work for the good guys. I get the job done.

In reality, I know that this could never happen. For starters, spying isn’t so glamorous as all that. And spies usually work for the military, which I wouldn’t want to do. But more importantly, I would be a terrible spy. I’m clumsy and easily fatigued. I can’t pick locks or hack computers – I can’t even drive a car. I always think of witty comebacks too late.

I think the reason I fantasize about spying is because I would be such a bad spy. In my real life, I get frustrated a lot. I feel awkward, slow, incompetent. But in my spy fantasy, I always know what to do.

[This is another translated German class assignment. If I write more about my spy obsession I'll definitely discuss spying as an analogy for passing, moving through a world that you don't exactly belong in and trying above all else to keep that strangeness from showing. Trying to spot your contacts. Deciding when and how to blow your cover. Though I would of course be a bad spy, in some ways my life is kind of like spying.]

Saturday, November 6, 2010

The Long Way

[Image description: an inaccurately-drawn map of a room in my college dining hall, with two lines indicating different paths to a table. One path is a relatively straight line through an area free of obstacles, and this is labeled "ideal route." The other path is needlessly circuitous and is labeled "my route."]

I haven't posted a post in exactly one month today. This makes me sad, because I want to write a lot of posts. I'm working on a long, heartfelt one right now, an essay about a movie I saw recently, but that's not done yet. So I'm posting this comic I drew instead.

This is a hyperbolic drawing; I don't really take a path that is that convoluted. But it is true that I have trouble with spatial awareness and often can't identify the best route between two points. My friends have noticed that I'm just as likely to go the long, crowded way as the short, easy way. Or if I'm leaving a building, I might leave through the door on the opposite side from where I need to go next, and then walk around the entire building to get to my destination.

Now that my friends have pointed this out to me, I'm trying to memorize short routes between different buildings so that I can save myself time. In the meantime, I've found that if I wave to my friends from across the dining hall, they are more than happy to point me in the right direction.

Wednesday, October 6, 2010

Better Living Through Flowcharts

Here’s a moment from Glee that stuck with me for a long time. Some of the main characters are talking in the choir room, and they look over and see that Brittany, the show’s “dumb blond,” has been sitting there the whole time. When they ask her what she’s doing there, she says that she took some cold medicine and fell asleep, and when she woke up, “I forgot how to leave.” Cue laughter as viewers think to themselves, “Brittany’s so dumb, she forgets how to leave a room.”

I didn’t laugh when I saw this, because this is actually something that I regularly do.

This is a bit difficult to explain. The concept of how to leave a room is something that I understand at all times, but within that concept there are tiny, practical steps that I have to keep lined up in my head. If I don’t have to take anything with me, the steps might simply be “stand up, walk to door, open door.” (This can create its own set of problems if I’m having difficulty making my body respond to the commands of my brain, which does occasionally happen.) But if I do have to take things with me, I have to organize and gather my things before I can leave. If I have to get dressed, or even leave and get showered and come back and get dressed, and leave and brush my teeth and come back and then gather my things – that’s a lot of steps.

Here’s what happens: I’m in my room in the morning, and I’m tired because I haven’t gotten enough sleep, and I can’t get all the steps lined up right. Maybe I’ve just removed my pajama top and I can’t remember what to do. Some part of my brain knows that the next step is to put on a bathrobe before proceeding to the shower, but I’m having trouble accessing that information. In this foggy state, I look around the room and I see my laptop. Aha! I can check all my favorite blogs! Ten or twenty minutes later, I realize that my class starts pretty soon and I haven’t even put my bathrobe on.

That’s pretty much a typical morning for me. Under more adverse circumstances, the problem gets worse. One memorable Saturday morning last semester, I awoke to pounding music echoing through my ceiling. That morning, the process of showering, dressing, and leaving took four hours. That’s four hours spent mostly in my room, crying in frustration because the noise was so awful and I wanted more than anything to go away, but I didn’t know how.

I was telling my girlfriend about the problem of getting stuck in my room, and she came up with an ingenious solution. (By the way, guys, this is why college is awesome: when I tell my friends about stuff like this, they are supportive and even come up with ideas instead of, say, laughing nervously or calling me a freak.) She proposed that if I made myself a list of the steps necessary to exit the room, I could reference this list whenever I was confused.

Because I am a giant nerd, the proposed list ended up as a flowchart:

[Image: a hand-drawn flow chart which gives the viewer detailed instructions in how to leave the room, with separate paths for showering and not showering, and later two different ways to pack for going out.]

This is currently taped to the door of my closet and I’ve referenced it several times. Hopefully it will help me keep on track in the mornings and get out of the room in an emergency. I’m very happy with it. I think part of learning to live more independently is finding ways to make my life easier.

Thursday, September 23, 2010


I had great plans for this year.

Last semester, I started out on a bad note, feeling stuck and overwhelmed and not getting any of my readings done. This year, I decided I would start out the semester more organized. I would plan better, and overcome my anxiety so that I could be prepared for my classes. Instead of feeling disconnected from the subjects I was studying, I would do all my readings and feel fully engaged. I would emerge knowledgeable and triumphant. It was going to be amazing.

So I started my semester with the goal of preparing for class. And for maybe two glorious weeks, I came to all my classes with all or most of the reading done, knowing exactly what we were going to be talking about and prepared to make insightful comments. Finally, I felt like a good student, a good person.

I did some of this by being more organized and planning better, and this was definitely a good thing. But ultimately, here is where the extra reading time was coming out of:

- down time, relaxing by myself
- social time with friends
- time spent doing laundry and unpacking
- sleep

As a result of this, the wonderful feeling of being a good student came with some unpleasant side effects. I felt unhappy, and sort of purposeless, with so much time spent cramming for class. I got more fatigued, until last Thursday I fell asleep in the middle of a really fascinating lecture. And I felt so mentally tired that I spent most of the weekend lying on my bed listening to an audiobook, panicking about getting my work done but somehow unable to attend to it. Halfway through Saturday I decided that if I wasn’t going to do work, I should at least get up and clean my room. I then continued to lie on my bed, despairing of my ability to do things.

Three weeks into the school year, I successfully burnt myself out.

The lesson learned from this lovely episode is that I can’t do all my reading. I don’t have the time to devote to it, the brainpower to process it all, or the emotional strength to deal a life of academic isolation.

I feel guilty about this – like I’m a bad student, a slacker, a cheater. I’m not the scholar I wanted to be. I also feel sad when I think about what I’m missing. I mean, in one of my history classes we’re studying Nazi Germany, a subject upon which I have spent countless hours perseverating. I want to do this reading, and I’m sad that I can’t.

But at the same time, I feel kind of liberated. I don’t have to walk around haunted by the specter of chapters unread, thinking I’m a failure, convincing myself I really will read those last 50 pages and then falling short. I can admit to myself that I won’t get around to reading those 50 pages, or the introduction to the next history text, or the poem we’ll be looking at in German on Friday. I can go out for dinner with friends, or read blogs, or do my fucking laundry, even if I haven’t done my reading. And I shouldn’t feel guilty about it (though I do). I know that by not finishing my reading, I’m preserving my brain to fight another day.

Friday, September 17, 2010

Tragedy Time

[I wrote a slightly less polished version of this in German for class last week]

I’m talking with a friend, and it’s going well. She wants to know what I did over the summer. Because I trust her, I tell her that I volunteered at a program for autistic kids.

Her eyebrows go up like she’s watching a sad movie. “That’s so heavy!” she exclaims. “Was it really hard?”

I don’t know what to tell her. I try to explain that being autistic isn’t a tragedy like people think. I tell her that the kids are still kids, that actually the hardest part was getting along with my co-workers. But I didn’t like her breathy “that’s so heavy!”, so there are some things she doesn’t get to know. She won’t find out that when I was a kid, I went through the same program.


A lot of people think that autism is a tragedy. Some say it’s so bad that we have to find the genes, we have to prevent it. They say that autistic kids ruin their parents lives, that autistic adults ruin their own lives. They think that the world would be better without autism. Without us.


People say, “You don’t seem disabled.” But they always have an explanation for why I’m so different. “You don’t seem disabled,” they say, “but you do seem kinda weird.” Or “you seem shy.” “I thought that you were just really sheltered.” “I thought that you were from another country.” “I thought you were on drugs.” People make up lots of explanations for me. Autism is never one of them.

Lots of people don’t want to think about disability, about autism. They’re afraid of these things. They think that disability is the same thing as sadness. That autism is so heavy. They don’t want to change their minds.

“You don’t seem disabled.” “I thought it was something else.”

Of course you did.


“What did you do over the summer?” another friend asks.

“Not much,” I say. “How about you?”

Tuesday, September 14, 2010

Respect, and the Other R-word

At dinner last week, I was talking to one of my friends about the drama department. Across the table, another friend – I’ll call her Melanie – covered her mouth with her hand as if she had just cursed inappropriately. “Oh no!” she moaned.

My girlfriend leaned towards her and patted her on the shoulder. “If you start to say it, just say ‘ridiculous’ instead,” she advised.

I realized what had happened – Melanie had used the r-word, and then realized that she had done it. She looked up at me and said “I’m sorry! I feel like I let you down.”

I got up and walked around the table to give her a hug.

At first it was hard for my friends to remember even to avoid the r-word around me, let alone to cut it out of their vocabularies entirely. But gradually, they all stopped saying the word. They started telling me that now, they cringed when they heard someone else say it. I saw them explain to other people why using the r-word was wrong. My old roommate even asked his colleagues at his summer job to stop using it.

I think that now, they all understand that the r-word has real impact, that it hurts me and other disabled people. They didn’t all think that last year. But they got where they are now because they took me seriously when I said I didn’t want to hear that word from my friends.

I have the best friends ever.

Saturday, September 4, 2010

Things To Do At College

It was windy today. I went outside and I found a place with benches and bushes in a circle and I walked in figure eights and watched the wind move the trees around. I saw the flag on Main building waving and I heard it snapping. There was an airplane in the sky and I watched it for a long time. I sat on the bench and I leaned back on my arms and let my head rest on my shoulder in a lopsided way and watched the trees and felt the wind. I felt so unfocused, noticing all the sounds and all the movement but not so much specific things like squirrels and people. I felt happy in an uncomplicated way.

This might sound to some people like a spiritual experience or a deep connection to nature or a drug trip. It isn't anything so complicated as that, simply that being out in the wind is an incredibly absorbing experience. It's auditory, visual, and tactile without overwhelming any of those senses. Because of my sensory issues I find great entertainment in experiences that some people don't even notice. Watching snow fall is pleasantly stimulating in the way that I imagine watching action movies is stimulating to neurotypical people. Walking in figure eights in the wind -- maybe that's like a really great concert.

This time last year, I wouldn't have let myself stim in public, and because dorm rooms lack both wind and trees, I would have gone without this experience entirely. This year is beginning differently, with more beauty, and less shame.

Tuesday, August 31, 2010

In Which Everything Seems Pretty Awful

The fall semester has begun and my executive dysfunction is seriously bothering me.

I’m currently being screwed over by my lapse in planning during class registration last semester. At that point, I somehow thought that I could take only one history class in the fall. Upon arriving at school, I remembered that I actually need a major and perhaps I should check up on the major requirements, and I discovered that I’m seriously behind in terms of history coursework. Additionally, I kind of want an education correlate in case I decide to go into special education or a similar field.

This means that I’m scrambling to register for new classes, which takes up a lot of my time, and if I get into new classes I’ll be behind on the readings for those classes, and I’ll have to catch up, which will take up a lot more of my time.

I should have planned for this last semester. I should have known I would need more history classes. I should have signed up to get field work credit for the volunteer work I did over the summer. I shouldn’t be writing this post right now.

I’d forgotten how much work I do at college. I have to work to make myself work. This might sound frivolous and lazy, as though I just can’t muster up the willpower to overcome a hedonistic urge to enjoy myself when I should be working. In fact, if you were to check up on me while I’m attempting to make myself do work, you would find me in distress as I attempt to focus on a task but somehow always end up doing something else. The guilt and anxiety that this produces are problems in their own right, and the worse I feel the harder it is for me to focus. Can you spot a pattern here? If you picked “downward spiral,” you’re correct.

As I write this, I am looking at the pile of clothing that I have yet to fold and put away, the bags I haven’t unpacked, the bookshelf I haven’t assembled. As I write this, I should be doing my German exercises, or reading for my history class. Yet somehow I ended up writing this, almost without noticing that I was beginning to do something counterproductive.

Maybe in a few days things will be sorted out. Maybe I’ll find new classes. Maybe this semester won’t end with gloom and doom and late papers in every class and the academic apocalypse. Maybe I’ll learn to get things done on time. Maybe I’ll get more control of my life. Until then, I’ll be playing catch-up. Again.

Friday, August 20, 2010

Disability and Division

One of the attitudes about autism that really bothers me is the idea that autistic people are divided into neat little groups that have nothing to do with each other. Functioning labels – “high-functioning” versus “low-functioning” – exist to separate autistic people into categories. Once these categories have been formed, it’s easy to start generalizing about differences between the groups. Some people might say that “high-functioning” autistics are valuable and “low-functioning” autistics are not. Others might say that “low-functioning” autistics are actually autistic and “high-functioning” autistics are really just normal people who want an excuse to be mean. There’s a lot of prejudice reflected in these categorizations, and no truth.

Curebies – that’s a somewhat pejorative term for neurotypicals who want a cure for autism – are often really into the categorizing thing. If you say to them that as an autistic person, you find the idea of eliminating autism offensive and scary, they will quickly try to divide you from the people that they want to cure. They might say, “You can type/talk/pass/go to school, so you’re not really autistic.” They might say, “Of course we don’t want a cure for people like you; we want a cure for people with more severe autism.” They might say, “How dare you think that you have anything in common with my severely autistic child?”

Answer: I think I have something in common with another autistic person because we are both autistic.

Sadly, some autistic people wouldn’t agree. “Aspie” supremacists protest the removal of Asperger’s syndrome from the DSM because they don’t want to share a diagnosis with people who
“might have to wear adult diapers and maybe a head-restraining device.” (Amanda at Ballastexistenz and Bev at Square 8 have both written great posts about why this attitude is such a problem.)

When I say that I identify as autistic, or start talking about disability politics, people sometimes bring up the perceived categories of autism. They ask me, “Do you know what severe autism looks like? What do you have in common with people like that? Why shouldn’t we look for a cure for those people?”

Those people. People like that, as opposed to people like me.

My parents were alarmed when I came home from college with a renewed interest in disability. They’d spent a lot of time teaching me how to appear neurotypical, and here I was talking about the autism spectrum, and identifying with the autistic community. They recommended that I spend the summer working with non-verbal, non-passing autistic people, people who they thought of as entirely different from me. I think they hoped that when I met these people, I would get scared and decide that I didn’t have anything in common with them after all.

It didn’t work.

Earlier this week I was approved to start an
ASAN chapter based at my school. I’ve spent the summer with autistic kids, and now I’m looking forward to hanging out with other autistic adults during the school year. One of the things that I really want is for the chapter to be representative of people across the spectrum – verbal and non-verbal, passing and non-passing. I don’t want to stand apart from other autistic adults just because they do things that some neurotypicals think are scary. I don’t want to be another person trying to put as much distance as possible between myself and “those people.” “Those people” bear the brunt of our society’s horrible ideas about autism. “Those people” are just as much a part of self-advocacy as I am.

Those people. People like that. People like me.

Tuesday, August 10, 2010

On Lea's Terms

As I said previously, this summer I am volunteering at a program for autistic kids, run by a group of behaviorists from whom I got help as a child. Working with the kids can be really fun and rewarding, but sometimes, the other staff talk about the kids in a way that confuses and distresses me.

Take, for example, Lea (all names are changed). Lea is maybe 9 years old and she’s bilingual, which I think is really cool. She’s autistic, and she also has selective mutism, which is a kind of insensitive term meaning that there’s nothing physically keeping her from speaking, but she often doesn’t speak anyway. The staff where I work decided that actively pushing Lea to speak might upset her and make things worse, but learning to use speech more often was one of Lea’s long-term program goals.

Anyway, lately Lea is speaking more and more, which everyone is pretty happy about. But one of my coworkers seemed to have a problem: “It’s great that Lea is talking now, but she only wants to talk on her own terms.”

For me, communication – how and when one communicates, and what one wishes to say – is an intensely personal thing. I see nothing wrong with someone wanting to regulate their own communication. I understand the need to teach kids when to be quiet and listen when other people are speaking, but this wasn’t just about that – my coworker seemed to feel personally insulted by Lea’s desire to decide for herself when she speaks and when she is silent. Talking should be on adult terms. Talking should be on neurotypical terms. Talking should not be on Lea’s terms.

When my coworker said that, I think she was worrying about the non-verbal communication exercise. This is like a big silent art project, in which one kid, using only gestures, directs another kid in how to lay the paint and glitter out on the paper. Since non-verbal communication is difficult for many autistic people, including Lea, some of the other staff were worried that Lea would use her newly-available spoken communication instead.

She needn’t have worried. Lea was silent throughout the activity, although she had a lot of difficulty with the gestures. Her partner was Alice, the neurotypical sister of one of the autistic boys in the program. Alice seemed outraged that Lea was having difficulty understanding her directions. She angrily shook her head and stamped her foot when Lea made a circle instead of a dot. She held up her little hands and aggressively mouthed What? What? when Lea lost focus and stopped giving non-verbal instructions. A few times Alice even broke the no-talking rule to tell Lea that Lea wasn’t doing it right. I couldn’t tell what Lea was feeling, but to me she did not look happy.

“Alice was rude to Lea today,” I pointed out to the other staff, as we sorted the art supplies after the kids had left. “Does Alice have goals?”

“Oh, no, Alice is – Alice is typically-developing,” said my coworker. “She kind of sets an example for the other kids, right? She doesn’t have goals.”


Sunday, August 8, 2010

About Stimming

I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.

But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.

I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.

But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.

I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.

But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.

Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.

And then I went to college.

At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.

I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.

Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.

I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.

I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.

Monday, August 2, 2010


(You can click this to make it bigger if you like)

[Image description: a drawn comic in which I stand facing a lanky college guy. The guy is holding a cigarette and wearing a T-shirt which reads "I am totally not a hipster". I am holding a microphone, and a speech bubble indicates that I am saying to him, "May I have a moment of your time to ask you about irony?"]

This is a comic that I did about the challenges of interacting with people at college. Many college students, especially (but not exclusively) people who might be identified as hipsters, are really into irony. They are so ironic that they can even manage to be sincere in an ironic way. I'm not quite sure how that works.

Like a lot of people on the autism spectrum, I can have problems telling when other people are being ironic. I'm pretty good with plain old sarcasm (when someone says one thing but mean the opposite), but I can't get the hang of the meta-irony that hipsters use. Sometimes I have to ask people "What did you mean by that?" or "If you were going to express the same sentiments, but use words that were true, what would you say?"

This creates all kinds of awkward situations because people really aren't used to being asked these kinds of questions. One classmate began laughing, rolling her eyes, and exchanging looks with her friends when I asked her to clarify an ironic comment. And often, when I ask people what they mean by something they have said, they tell me that they don't know. This leaves me wondering: Do people really not know what they mean by what they say?

Do I fail to understand hipsters because they don't understand themselves?

Will other people ever make sense to me?

Tuesday, July 27, 2010

A Noble Experiment

I am starting a blog.

It's going to be a blog about disability. Mostly, it will be about my experiences as a disabled person, but I also plan to talk about disability in society, portrayals of disability in the media, ableism and disability activism, and disability history. It’s going to be a place where I can ramble on about things that fascinate me in the hopes that they fascinate other people.

I can think of lots of reasons not to start a blog. I have a livejournal which I never update, and a long history of starting projects I never finish. The internet is a scary place. Talking about one’s disability online is a mildly risky thing to do. The autism blogging community is bitterly divided, and online feuds seem to be common.

But I’m starting a blog anyway. In large part, I am doing it because
Amanda told me to. But also because the internet is so big, there is room for everything I have to say, and maybe I can talk to some people who have things to say too.