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.”
January 14, 2015
I have a lot of things to say, but also a lot of other things to wade through this month (and you’ll be hearing about some of them before long : ) Let’s just say that I got to delete a whole column out of my 5-column to-do list yesterday, and it felt amazing.
(Contractors tearing a wall out of my kitchen. They thought there might be a breaker box behind it. There wasn’t.)
December 22, 2014
Originally posted on Broken Light: A Photography Collective:
Photo taken by contributor Ty Fitzgerald, a man who has been diagnosed with Bipolar II. Ty has a fondness for Lo-fi and Lux filters because they intensify shadows, highlights and colors. Such photos visually represent the way he sees the world, a little brighter and darker than he imagines those without bipolar disorder see the world.
About this photo: “This photo was taken in New Smyrna Beach, FL at sunset. A father and son were fishing and I managed to get a shot with just the son in it. The tide was coming in and there was water pooling all around him. When I dropped to the sand to take the shot, it looked like he was walking on water. I like this shot a lot because it has that “decisive moment” that Henri Cartier-Bresson described, where just a split second sooner or later, it would not have worked. I like to take photos of people when…
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December 15, 2014
This post actually started on Tumblr in a discussion of The Hunger Games and the various interpretations and identities that people project onto Katniss, and carried over into a question of how people of the demisexual/gray-ace spectrum can accurately perceive other people’s levels of sexual attraction and where they as individuals fall on that scale, which I wanted to expand on a little bit.
Obviously, we can’t ever know fully and objectively what is in another person’s head or internal experiences. So how can demi or gray-ace people know that we’re different, and that we aren’t just arbitrarily deciding that we’re different?
Conveniently, there is already a whole body of writing and experience from another population of people who have had the experience of knowing that they were different somehow, in frequently invisible, subjective ways, often in the complete absence of having been explicitly told so or possessing any language to describe how or why—indeed, often even in the face of other people relentlessly insisting on the contrary—and turning out to be right–
Most autistic people who were diagnosed later…say, after age 18…talk about having always or almost always known that they were different, whether or not they could effectively describe how they were different or how they knew.
A while back now on Tumblr, a parent who was considering the best way and time to talk to her kid about his diagnosis, asked the autism tag approximately when people knew somehow that we were different from our peers. Not necessarily when we knew our diagnosis, but when we felt or knew we were different. Self-reports ranged from ages 3-10.
This is actually one of the earliest realizations about myself in relation to people around me of which I even have explicit memory (I was about 3).
But how can we really know that other people don’t (for the most part) share our sensory reactions, our cognitive differences, our difficulty with speech and language?
Well, we have pattern recognition. Most people don’t walk around acting or speaking as if they share those experiences on a pretty consistent, everyday basis. Our reactions make sense to our experience of the world. Other people punish and shame and decide horrible and untrue things about us on the basis of those reactions. Disabled and neurodivergent advocates have amassed decades’ worth of writing, media, and activism at this point in an attempt to convince parents and professionals that we aren’t just broken, we’re operating in a hostile environment, and most of them still don’t believe us.
There is a burden of evidence, at some point, that becomes overwhelming, that other people are not experiencing the world like you do. Other people aren’t just hostile to the way we react to the world, they’re often baffled.
Unless I’m supposed to believe that the non-autistic 98% of the population has just happened to build a culture, educational system, and set of social and employment expectations that is just as torturous and awkward for them, but they’re all just pretending that it’s more or less tolerable and manageable? And they overwhelmingly do this without ever being instructed to? Or that somewhere between 1-2% of us simply missed out on this instruction? And that most other people really do have the same level of difficulty and discomfort, but we’re the only ones not pretending otherwise, at devastating cost to ourselves?
(And yes, there are people who do go a very long time pretending that things aren’t that difficult for them. The stress of which causes midlife burnouts. If not young adult burnouts. Which again, we don’t see masses of non-autistic people having.)
Likewise, there is a point at which the overwhelming amount of information available to me about how most people interact and live their lives, does not suggest that demisexual or ace spectrum people aren’t really having experiences fairly different from other people’s.
The alternative explanation I’m left with is that both autistic people, and demisexual/gray-ace people, are just the only ones being honest about our experiences, and everyone else is lying all the time, in such a way as to make the world really painful and difficult for themselves, and everyone knows that that’s true except us.
Which still would not explain the downright confusion and bafflement that I’ve gotten, not just in relationships but in health and sex-ed classes, from teachers, when the whole set of expectations from other people regarding sexual relationships does not match up to mine, in a “looking in a mirror and seeing nothing” kind of way. I could imagine an entire set of societal and relationship expectations being built on a lie, and authority figures or romantic partners expressing displeasure when I defy expectations to uphold the lie, but not just confusion.
Are the vast majority of people just pretending to be deeply confused about how the interplay of emotion, physical comfort, and sexual attraction works for them?
Or when people go “Ha ha, you’re not different, you’re just like everyone else. Everyone feels like [total distortion of what I even just described].”
You know how obnoxious it is when non-autistic parents go “We’re all a little autistic! Everyone is on the spectrum!” Because no, they’re not. I did not grow up feeling inhuman because 98% of the population is really just like me.
Likewise, I have a hard time buying that 98% or more of the human population is really just like me with regards to comfort and emotional needs in relation to sexuality, but are pretending not to be to the extent that I can’t even take part because it just doesn’t even make sense to my most basic physical experience. And that really I’ve spent this long feeling this incompletely human and left out and lonely because I just didn’t realize that everyone else is lying really, really well about their most basic experiences of physicality and attraction?
You see how that strains credibility?
(I don’t actually think that’s true; I don’t think that badly of either non-autistic or non-demisexual people.)
Would you tell a gay person “No, you’re not really different, that’s really how everyone is. How do you know that it isn’t?”
Demisexuality is a difference not necessarily in who you’re attracted to along the gender spectrum, but in how attraction works. In some way, shape or form, either a strong emotional bond has to precede sexual attraction, or emotional attraction is prerequisite to sexual attraction.
We walk around every single day of our lives, for decades on end, seeing and hearing messages that attraction works, or at least is supposed to, in a way that it actually doesn’t work for us. You notice after a while. You notice that you don’t feel and react in the ways that other people act like you’re supposed to.
Or, if everybody else is really lying in countless, tiny, casual, everyday ways about what attraction is like for them, and not only lying, but living out their lives as if something that isn’t true, is true…to the detriment of their own happiness, comfort, and quality of relationships, and that’s the only reason why people like me think we’re different….maybe they should stop.
Or else stop telling me that I can’t accurate perceive that what I’m experiencing is qualitatively different from what I’m being pretty consistently told that other people do.
Maybe then we’d also have an honest, accurate view of the true scope of human sexual and emotional diversity and no one would have to feel inhuman or alone or wind up thinking that they’re just not capable of having relationships. But then what do I know?
November 7, 2014
[Image: Graffiti on a wet sidewalk with fallen leaves reads “PROTECT YOUR MAGIC.”]