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.
February 12, 2015
For those who haven’t been following the saga of Emily and Emily vs. the place where we live since 2004…our apartment building’s hallway hasn’t always looked like this….
February 9, 2015
I am oh so glad to see the anti-vaccination movement finally seeing some serious public blowback, and very, very sorry that it has taken a lot of sick kids to do it. And alternately thankful at writing like this (Vaccines Don’t Cause Autism, But That’s Not the Point. Stop Being Ableist.) being all over my Facebook feed, and ambivalent about some of its logic. (It is still well worth reading.)
IF vaccines caused autism, even in some tiny percentage of vaccinated children, then whether the tradeoffs were worth the risk might be an ethical discussion worth having. (In which I would still give a hell of a lot of weight to “Measles encephalitis will straight up kill you, autism won’t.”)
But it isn’t. Vaccines don’t cause autism, period.
A hypothetical situation: If there were some form of medical treatment that carried a risk of turning me non-autistic, I would be deeply hesitant to take it, whatever the risks of not taking it were. Not because I think being non-autistic is the worst possible fate. The experience of the 90% or so of people I know who are non-autistic suggests to me that being non-autistic is not the worst possible way to go through life.
But that’s not why I wouldn’t want to be non-autistic. It’s because, as the neurodiversity movement has gone to great lengths to attempt to communicate to the neurotypical majority, the patterns of how we innately experience the world on a neurological level are intimately entwined with our identities as people.
I don’t know what about being non-autistic is so compelling to non-autistic people. I don’t know how many of them could even articulate what it is if you asked them, but they seem attached to it, and as someone not sharing that experience, I don’t get to assume that they are wrong to be so.
Likewise, if there were some form of medical treatment that carried the risk of turning a gay kid straight, I think we would rightly express serious ethical concerns about that possibility. Not because being straight is the worst possible thing that could happen to a person. But because, as the gay community has spent decades trying to tell us, sexuality for most people is as intrinsic to identity and their sense of personhood as things like gender, ethnicity, language, or spirituality might be.
Try it: If you’re cis-gender, would you readily embrace some kind of medical intervention that, whatever its positive effects, carried the potential side effect of turning you into a member of another sex or gender? Even if you chose to accept that treatment because not dying was worth it to you, would you do it with no sense of fear or conflict?
Because the fact that being autistic or not, a man or a woman, gay or straight, cisgender or transgender, isn’t a bad or wrong thing unto itself is kind of beside the point when we’re talking about altering deep-seated characteristics that are so profoundly tied to our identities.
If vaccination could cause autism, even if we overwhelmingly decided for good reasons that the tradeoff was acceptable, that would be something we’d have a responsibility to know. It’s not because it doesn’t. In fact, a great deal of research has been dedicated to finding out whether vaccination can cause autism, and I’m resentful of that not because autism isn’t something that should be feared (though it isn’t), and not because Andrew Wakefield turned out to be wrong, but because he committed fraud and every variety of ethical malfeasance and objectified autistic people in the process, for personal gain, with no remorse whatsoever. Being wrong and eventually discovering that you’re wrong isn’t a sin, scientifically, but that’s not how we got the myth that vaccines cause autism. It wasn’t just bad study design or misinterpretation of data, it was a knowing act of fraud and selfishness that set both acceptance of autistic people, and public health, back by decades.
And don’t get me wrong—I am really appreciative and glad to see so many of my friends, so many writers and bloggers that I respect, going “You know what, I would really rather my child be disabled than dead. I would really rather have a living autistic child.” Because it’s still commonplace for parents not to feel that way, and it gets kids mistreated and killed.
But the thing is, the two things aren’t connected. You’re not risking your child becoming autistic by getting them vaccinated, because there is no relationship between the two things. And I’m honestly a little uneasy about reinforcing the link in people’s minds at all by saying “Of course I’d take the chance of my child becoming autistic to protect them from life-threatening disease,” because you’re not taking that chance.
Vaccinations don’t cause autism. And autism isn’t a death sentence. And those facts are unrelated.
And whether autism is a horrible affliction or an expression of human diversity with advantages and disadvantages like any other, has nothing to do with whether it’s okay to make autistic people boogeymen or rhetorical pawns, because the answer is “no” regardless.
Let’s take another example, of something that is generally agreed, including by the people who have it, to be pretty awful, like ALS, Parkinson’s, or Alzheimer’s disease…all of which are also not caused by vaccination. Would it be any less wrong to fearmonger about vaccines by using a popular fear of something that is pretty awful in its own right?
No—the people coping with that condition deserve just as much as autistic people not to be made pawns in an ideological skirmish, to not have their lives and struggles be made the symbols of somebody else’s irrational fears.
Would it make any sense to say, “Vaccines don’t cause Parkinson’s, but anyway, Parkinson’s isn’t the worst thing in the world?”
Because here’s another thing—you can run the risk of being ‘splainy to someone who has less positive feelings about their own condition. Autism isn’t a degenerative and pretty much universally loathed condition like Alzheimer’s or Parkinson’s, but there are autistic people who really hate it. Who attribute a great deal of the pain in their lives to autism, who wish they weren’t, who would take a cure if one were available, who really feel that it is the worst possible thing to happen to them. Usually when I talk to these people, I have to question whether it’s the difficulties of autism itself that makes them feel this way, or years and years of being mistreated for being autistic, which can be a very difficult distinction to make when you have no standard for comparison. But sometimes it is the former and not the latter of those things, and ultimately people have a right to feel the way they do about their own lives. I hope that they come to a better place eventually, but they also have a right to do that on their own time and in whatever way they need to, not by being told by someone who doesn’t know anything of their experience that they should just accept it.
And they still deserve not to be made objects of fear in the wholly irrational campaign against vaccination…because whether a subjective experience of autism is the worst thing in the world or not, is logically, factually disconnected from whether or not vaccines cause it…and they don’t.
Something else that actually happened: A few weeks ago, after the release of a Danish study purporting to establish a link between circumcision before age 5 and development of autism, a Facebook friend of a friend said something along the lines of (I’m paraphrasing) “Obviously it’s totally ridiculous, but if it scares people out of circumcising, I’m all for it.”
Which to me was actually far more offensive on its face than the persistence of fear that vaccines have anything to do with autism. Because that’s not just an irrational fear; that statement expresses a conviction that it’s okay to choose a group of people and use our existence as a scare tactic for your own ends. That if a group of people is presumed sufficiently voiceless, you can strip them of agency and the right to self-representation and use them to promulgate a falsehood that’s convenient to your own beliefs just because it’s easy.
(I don’t actually have a lot of blame for people who admit to still being afraid even though they rationally know that the connection is unfounded. Certain people and certain organizations have spent a lot of time, money, and effort to make them afraid.)
In this, it doesn’t matter how sympathetic I am to the cause of pushing back against routine, medically-unnecessary procedures on newborns. It doesn’t matter how good I think that or any other issue is. We are not your rhetorical props. We are not your scare tactics. Our wellbeing and acceptance as full and not defective or broken human beings are not your pawns for whatever your own pet cause is, no matter how good unto itself it might be.
There is one more way in which the anti-vaccination movement puts autistic people at risk that I rarely if ever see mentioned, and it’s this: Vaccination protects autistic children, too, not just non-autistic ones. Non-autistic children are not the ones who need and deserve protection from preventable disease while autistic children are the risk we run to do so. Further, most people at this point know that autism involves communication difficulties by definition, but what is less well-known is that autism often involves particular difficulty in communicating about pain or illness or other things involving body awareness. Also that pain or illness can take a particularly high toll on the communication and coping abilities of autistic kids compared to other kids. Autism is a complicated disability, and one thing that an autistic kid doesn’t need on top of everything else that they are dealing with—is the measles. The anti-vaccination movement treats consequences to autistic lives of preventable, serious illnesses as a non-issue (and the lives of immune-compromised and medically vulnerable people as utterly disposable, but that’s a whole other essay).
I actually find “Vaccines don’t cause autism, period,” to be a perfectly acceptable assertion. If you do feel the need to add an “and furthermore…,” some things to go with could be “Vaccines don’t cause autism, and vaccines also protect autistic people, whose lives count as much as yours,” or “Vaccines don’t cause autism, and autistic people are not appropriate scapegoats for your fears, so stop it.”