July 2, 2015
Out for a stroll between rehearsal and a show one night last week, I walked a bit further than I intended and wound up lost enough that I was starting to have doubts of finding my way back in time for my own call time. (I did.) Happily, though, I stumbled across a place I’d been wondering about, which I’d been seeing signs without directions for…and resolved to go back to explore on my day off.
The Shirt Factory is a charming, and weird, in the best way, multi-use space of artists’ studios, shops, and historical displays, converted from a closed shirtwaist factory in Glens Falls, NY.
Preserved and restored sewing machines line the hallways, some of which were built in the 1910’s and used continuously until the factory’s closing in 1996.
Flashbacks to my time spent working on a show about the Triangle factory fire…
The whole place is quiet, and creaky, and feels slightly removed from time, not to even mention the constraints on space, and light, and quiet that I’ve gotten so used to in the city, where they’re not non-existent, but they are so expensive and hard to find. I’d like to live somewhere that places like this are more possible again someday.
I put a quarter into this machine just to see what was in it, and got a pin-back button with a shark’s tooth on it… outside this door…
I wonder what this is about….
June 19, 2015
The inspiration for this post emerged somewhat tangentially to an incident on Twitter several months ago, in which a pair of parent bloggers decided that publicly posting sensitive and humiliating information about their autistic teenager was a great thing to do for awareness. Plenty of other people wrote or responded to the inciting incident, so I don’t really feel the need to address it much further.
But something else happened in the aftermath that I actually do think deserves to be talked about more. It’s not even really about autism or disability itself as much as it’s about language deprivation and identity and the denial of minority experiences as genuine.
In a comment on one of the early Facebook threads about this particular series of Twitter posts, I said to this couple, “You need to read up on what exposure anxiety is, and what its effects are.” (Exposure anxiety isn’t even the central subject of this post, although I do recommend everyone to read about what it is.)
They said that they weren’t interested in anything I had to say. Nothing new. But a couple of other people were, and there was a conversation about what exposure anxiety is and why it matters. One friend said yes, that makes so much sense as to why the kids she teaches are often able to do some things but not others even though they seem closely related. One friend of a friend said “Holy cow, there’s a word for that?? That’s really a thing?!” and started a Facebook discussion herself about having been so glad to find this out.
And it was not very long at all before someone was accusing her in comments of “collecting labels.”
This is a really, really common accusation against people with a diagnosis of some kind. That we’re just “collecting labels,” “collecting diagnoses,” and “identifying too much with a diagnosis,” closely related to “using it as a crutch,” or in contrast to the ideal of someone who “doesn’t let their disability define them!”
But listen, people who make this accusation? People who don’t understand, because you’ve always just felt like a normal person?
You also go through life collecting labels. You also have a whole collection of terminology and shortcuts and vocabulary for thinking about how you work and things affect you.
The difference is, you grow up with a common language for common experiences with the people around you, for the most part. We don’t. We grow up often in a void of knowledge and vocabulary for how stuff works for people like us, and often deliberately deprived of it. (When parents decide to just never tell a kid about their disabilities? That’s what they’re doing.)
We try and try and try to make the language that we have available fit our experiences, trying to meld and forge and hammer language around experiences it wasn’t built for. Or we try to shoehorn our experiences into the language available.
It never, ever quite works, and the cognitive dissonance can tear you to shreds, or leave you feeling unreal in your own life, or like you’re kind of always walking through the world as a ghost.
Or you start making up your own language for things just to have a reference point if only to yourself. (In many instances, I’ve seen it turn out that different autistic people have come up with almost exactly the same language for a certain thing, almost or totally in isolation from each other. Or that even if I didn’t come up with the language, I’ll hear a phrase or piece of terminology and know exactly what it means, the first time I’ve ever heard it, because it describes so well, so intuitively, something that I’ve never been able to.)
I think you don’t actually do less label-collecting than we do, you just get to do it in a way that’s taken for granted as normal, from a much earlier age. I mean, unless you just don’t use descriptive phrases for the things in your life or the experiences you have in common with other people, or what your problems or weaknesses are, that help make sense of those things to you. Do you use any kind of shorthand language to describe your needs usefully to both yourself and others in a way that makes it more likely that you will be able to find some kind of solution or assistance?
That is what gets us told not to “use it as a crutch.”
Your right to learn how to apply language to your experiences is taken for granted, because your experiences are largely taken for granted as real. (The core belief, at the basis of most prejudice about disability, is that it is fake.)
Typically developing kids are widely regarded as having this right. Disabled kids, queer kids, kids who are atypical or exceptional in some other way, are not widely regarded as having this right.
We tend to be much older by the time this starts happening for us in a meaningful way, or by the time the crazy patchwork of scattered fragments of information starts looking like a coherent understanding of why everything is different for us.
Of course we’re thrilled when we start encountering explanations for our experiences that are more accurate, and useful, than stupid, lazy, rude, psycho, freak, immature, dumbass, selfish, stuck-up, incompetent….
Because for as much as some people have a problem with us collecting labels, they don’t seem to have such an issue with giving them to us. It’s almost like their problem isn’t with people having labels, it’s with their own inability to accept that any experience of the world is genuinely different than their own and warrants different methods of coping.
Or that for once they aren’t in control of what other people get called or whether our experiences are taken seriously.
I mean, try picking one thing about yourself, one thing you know intimately from long-term personal acquaintance, either positive or negative or just important, that’s really important to your ability to understand yourself and make sense of how the world works for you. Try imagining that you don’t know any words for that thing, and you never have. And then you find some.
In that moment—spoiler alert—you feel like the richest person on earth. You’re rendered speechless with astonishment, or you want to whoop with the thrill of recognition.
And then someone comes along and goes “Ugh, you’re just collecting labels.”
May 7, 2015
It is well-established by now that my apartment has, let’s just say, wildlife issues.
When I kept hearing scratching coming from behind my curtain while watching Grimm, I kept trying to convince myself it was just the wind scraping something against the metal window frame or curtain rod.
[Image is of a gray pigeon nestled between the window frame and my quilts.]
But it was this sleepy guy.
I gently convinced him that maybe the outer windowsill would be just as good.
May 6, 2015
Finally. This was one of those winters I was starting to suspect would never actually end.
(Magnolias in Fort Greene, Brooklyn)
April 30, 2015
[Image is of the character Gaston, from the Disney film Beauty and the Beast, known for his dislike of girls like Belle reading books, and Belle, whose book he has stolen.]
I used to write more about educational issues than I have been for the past couple of years. Partly due to the fact that as I’ve known more of my own friends who have become teachers, and more parents especially of kids with complex educational needs, my feelings have moderated a bit. So many people are doing the best they can with not enough time or money. Perhaps I’d been too strident. I was actually wondering recently if I might more or less give up the topic. Maybe I was a little bit crazy.
Well, the New York Times has come to the rescue with this story of school districts that require students who opt out (or whose parents have opted them out) of New York’s state assessment tests to sit at their desks and do nothing while their classmates take the exams.
With sadness, I conclude that I was not crazy.
The article details that while many districts have relented to parental pressure and allow test-refusing students to either do other work, read quietly, or go to the library, some are sticking to policies of prohibiting them from doing anything but sitting and staring.
“We were not going to reward them by having them do something that other students may perceive as either fun or more interesting than taking the assessment,” says one superintendent.
Either fun or more interesting than taking the assessment, as in doing other assigned homework or reading a book quietly.
I’m just going to throw this out there, school administrators: If you sound like a villain from a Roald Dahl book, you should possibly reconsider your life choices.
Funnily enough, when this story came to my attention, I’d just been telling a friend the story of how my middle school assistant principal had tried to disallow me from reading at lunch.
It actually started with A., a new student that year, who was sitting at a table behind me quietly reading a book one day, when I overheard her being told to put it away by Assistant Principal Jones. A. complied and didn’t say anything else about it, though I asked her later if what I thought just happened really just happened, and she said yeah, she thought it was really odd, too.
Already a lot of things about the way things were done in this school felt stupid, mean, and unfair to me, but this was above and beyond. Not long afterward, having a book I was eager to finish, and not so much trying to be deliberately snarky but definitely curious as to whether I’d draw the same reaction, brought my book to lunch.
Sure enough, Mr. Jones was along shortly to tell me that I needed to “put that away, young lady.”
It wasn’t a school library book, it was mine, so the objection couldn’t have been that food would get spilled and ruin it, or that I was reading and not eating, because I’d eaten and had my empty lunch cooler to prove it.
And this doubly didn’t make any sense, because Mr. Jones was also the person who, every other day or so, was selecting for punishment whole entire classes of sixth and seventh graders for supposedly being too loud. If we were reading, we weren’t talking, so shouldn’t he be thankful for our not contributing to the noise?
In telling Sparrow the story, I finally figured it out.
He didn’t like us reading because then we were proof that he was just picking tables randomly to punish without a care in the world for whether we’d actually done anything wrong. If we were reading…we were obviously innocent of being part of the discipline or noise problems, and he wasn’t thankful at all because that undermined his excuse-making ability for the bullying and scapegoating he enjoyed. Collective punishment of whole classes was common, and treatment of everyone as guilty was justified because “we can’t always tell who the troublemakers are and aren’t,” but now that was demonstrably not true. And this development was not appreciated.
I know this sounds like childish reasoning, but if that wasn’t what was behind it, somebody else solve this for me, because I haven’t come up with a better answer in nearly 20 years.
(Long story short: Our gifted teacher was enlisted to protest to the principal, and before long there were about five of us participating in defiance, and he actually kept fighting the issue, like we went through two or three rounds of this, but eventually our right to read at lunch without further harassment was established.)
Is it self-evident enough that when school faculty would rather kids actually do nothing than read or be tempted by having to see another kid reading, that something is extremely wrong? I mean I’m just inarticulate at the logic that if they can’t control how you use your time, you won’t be allowed to use it at all…but not disbelieving.
Because the effect isn’t only to not make refusing the tests look attractive, it’s to prevent any kid from showing that they can and will use their educational time more constructively. And they can’t be allowed to generate any evidence that their time is being ill-used, that they know it, and that they do know how to do better with it.
It’s almost like the people implementing these policies are more interested in safeguarding their own ability to see their students as the problem. Their interests aren’t served by their students’ taking an opportunity to prove that they aren’t the problem, by reading on their own initiative.
Now where have I seen that before?
(I know, I know…somewhere down the line it all comes back to funding. School districts ultimately need kids to take these tests for reasons of funding and school quality rankings.
I humbly submit, though, that when growing percentages of students are saying No, this is not a good use of our time and we’d like to be educated as people, not test scores, that maybe schools should try standing up for their students.)
In point of contrast, my senior year of high school, some new set of standardized tests was introduced for which we were a test group for the state of Missouri, and for some reason that made sense at the time, they had half the class take it in the fall, and half in the spring. This left half of us with nothing to do for four hours a day, for two full weeks. They put us in a spare classroom with only the typing teacher to keep an eye on us, but otherwise left us alone, to do whatever we wanted as long as we could do it in that room and without being heard too far down the hall.
People did homework, or just talked while sitting on the combination desk-chairs in contortions not normally allowed, and I have a vague memory of some Hangman getting played on the blackboard. I finished reading Les Misérables and started and finished The Three Musketeers and I think also some Kurt Vonnegut.
And as much as part of me decried the waste of time that we were required to be there when no one cared what we did, part of me was actually pretty overloaded with AP classes and happy enough for a chance just to read a book which has turned out to have stayed with me in a lot of ways besides being how I passed the time while stuck in a room so half my classmates could take a test run of a test.
I remember The Three Musketeers. I don’t remember one single thing about that test. It’s an absolute blank in my memory.
I’m not making this stuff up, and I wish I were. I don’t actually enjoy being obsessively critical of the American educational system more than anything in the world, but it just keeps going to inane lengths to show that it doesn’t really love it when kids independently demonstrate, like, enjoyment of literacy, or ability to act in their own best interests.
I think it might not be a coincidence that those are things we’re supposed to believe that kids don’t have.
If I can boil anything down from this, maybe something like “If school officials can’t fucking stand the sight of a child reading…there is something else going on, and it’s probably nothing good.”
April 22, 2015
Our weather has been really nasty for a long time, I have had almost no break time over the course of the winter, and my apartment building has been under renovation so I’ve also been in construction noise hell. I took advantage of a recent day off with halfway decent weather earlier this month to walk 12 miles or so.
The Old Putnam trail in Van Cortland Park turns into the South County trail in Westchester County. It follows the route of what was the Old Putnam Railroad from Putnam County to NYC.
That’s the end of New York City right there.
Sadly, this route is marred by traffic noise for quite a bit of it, but a few sections are really beautiful and quiet.
I made it to somewhere called Grey Oaks, NY before I was really hungry and starting to figure I should probably make it back to NYC before dark….I also forgot how hard paved trails are on the feet.
April 18, 2015
So my school district had this policy, too–no unnatural hair colors, including red that was too bright. Kids were sent home under this policy a fair bit and it did not make international headlines.
But aside from just thinking it was unfair and stupid when I was in middle school because I thought people should have a right to self-expression in ways that are harmless to other people, I actually just realized something, while commenting on a Facebook thread about this particular instance, about why it inspired such intense contempt in me for the school personnel upholding it.
The adults making and enforcing policies like this were people claiming that we should look up to and respect them, that they were entitled to our mental time and attention and a huge degree of control over our lives.
But supposed adults who could not deal with a child having green hair…were no way, no how, going to be people who could teach me how to survive in this world or make a life that I wanted to live. That was a huge signal that the challenges relevant to our lives were…on a different order of magnitude.
Something in me was going “You cannot help me, if you seriously think that this is a big deal and expect me to as well.” If a student’s loud hair is way outside the range of your ability to cope, if that is what bends you out of shape…you don’t have the maturity or adaptability or the ability to teach them that I need, to put it somewhat mildly.
It really undermined my ability to take those people seriously as grownups, let alone as teachers or authority figures. It also really put the lie to the claim that so much of what happened in school was necessary to teach “social skills” or ability to work with people different from yourself…when how much clearer could it have been that tolerance for difference was for some people but not others?
March 26, 2015
“Springtime” views from my walk across Central Park South to work.
March 17, 2015
(Crossposted today at We Are Like Your Child)
I start to rediscover that I’m a kinesthetic learner, and it’s odd. It’s so contrary to everything I’ve ever been told about myself, and it feels so good.
When we started learning about multiple intelligences theories, kids who were described as kinesthetic—as learning most naturally through movement or action—were dancers, naturally talented athletes, the class clowns, physical actors, the kids who could never sit still. Kids who were always in trouble for not being able to stay in their seats, likely to pick up a diagnosis of ADHD somewhere along the way. High-energy, daring, uninhibited, and loud.
And I was very quiet, very still, very inhibited. I was always in trouble in PE for not knowing what in the world I was doing or being totally unable to keep up with the rest of the class. I was badly coordinated and nowhere near fast enough for any team sport. I never placed in any event in Field Day. I failed out of gymnastics.
Kinesthetic learners were generally thought not to do well in school because of their need for activity and movement. I sat quietly in class and got all A’s. I had a photographic memory. Teachers were always scolding, “You can’t expect to only study the night before and do well on this test!” But I could. I got into the gifted class and kept my hands rolled up in my sleeves.
But all the while, I just ached to be taught how to do things. I clawed my skin off from having not enough to do with my hands. And I could feel the terrifying void that existed between the fact that I knew about a lot of things, but I didn’t know how to do almost anything. The scrutiny of other people was literally paralyzing. I resented more than anything as a kid when we’d be told that we were going to learn how to do a really cool thing, but then what we actually got was obviously a fake, dumbed-down version, of making gingerbread houses or uncovering fossils. People told me a lot about how I was never going to make it in the real world, but nobody seemed to want to teach me anything real.
But writing is movement, too, and I was better at that than most people. So is beading. So is loading electrophoresis gels.
As a child, making tuna salad or cutting up fruit for myself, people try to take knives away from me, sure that I’m going to cut myself, but I never do. (They do.) I never fall on steep hills or icy sidewalks when adults are sure I will. I never sprain an ankle toe-walking.
I could feel that if I could know a thing in my body, in my joints, in my bones, in how it behaved in my hands…anything I could make a physical habit out of, was a thing I’d always be able to do, that I could never really lose or forget, the way I’ve forgotten calculus almost entirely from disuse, and chemistry, and how I’ve lost my photographic memory to other cognitive demands. (That one makes me mad.)
I start stealing opportunities to do that. Time without a well-meaning adult hovering over my shoulder was time to steal fire.
We have typing class in 9th grade, and once I start learning, my fingers twitch constantly, ghost-typing out any sequences of overheard words against my thigh. I had no idea what was wrong with me, why I couldn’t stop.
I was in high school, and may’ve been listening to a lecture from my grandfather about the difference between people who work with their minds and people who work with their hands, and thought silently, “If I don’t work with my hands, I’ll go insane.”
My acting teacher tells me to get my hands out of my sleeves. I turn out to be good at acting.
At a new job, I initially panic when I learn that my nightly duties will involve moving pianos by myself. But I quickly get a sense of the individual moods and idiosyncracies of the Hamburg, the New York Steinway, the Fazioli—their resistance and center of gravity. They almost have individual wills, like baby elephants.
I get told at a meetup that I have very loud hands, and it makes me so happy.
I start teaching myself a little ASL to make up for the apocryphal childhood gesture language I was trained out of, that I have no conscious memory of, and it feels like breathing air instead of doing complicated sorcery.