Finding The Right Words

Lauryn:

i like your kerouac way of writing from real experiences

Julia:

you wrote in your note (let me find it):

So for all of you out there that react on face value. For all of you that are dictated by the very first sights and sounds of the moment (including myself), I urge you to feel between your senses. Cultivate your patience. Because yes, things happen for a reason, but not necessarily the reason in which they first appear.

And
well
I think that is what I am learning

****************************************

I am a sensational, living in the moment, unmediated girl. A lot of this is simple biology–I can’t just will away sensory overload, I have to react–and a lot of it is the result of living in a world with soaring heights and suffocating lows. But being reactive, hyperactive, flighty doesn’t help me very much in the long run. If anything, it impedes me.

I’m thinking about high school here. I’m still, always, thinking about high school. It’s a problem that won’t stop eating away at me until I solve it, and I feel like I’m getting closer. I certainly have more pieces laid out in front of me, and I can start to see how they fit together.

Junior and Senior year, all I could see was the surface. All I saw was groups forming, and friends who acted one way with me and another way with all their other friends. I didn’t understand it, and I tried to explain it, using what words I had, but of course, only seeing the surface, only using a limited vocabulary, I couldn’t get it, could only annoy people with my vague and misguided approximations.

But I was trying to think. And eventually, I was able to stop feeling, and start analyzing. And then everything started falling into place. And as CBT teaches, when you change how you think, you change how you feel, and when I saw on Facebook this Wednesday that a bunch of my friends got together Wednesday night, it didn’t hurt. I wasn’t even jealous. I was happy for them. Because I understood what was happening, and I could accept it. I didn’t want to be there. I already had exactly what I wanted.

The reasons may not be exactly what they appear.

But reasons there are, and if I’m patient, if I think, if I ask what others think and manage to communicate with them in some meaningful, intelligible way, I can find them. I can find them if I just step back and let things fall into focus, like those magic-eye puzzles.

I’ve spent the past several years of my life searching for the right words to say what I mean, to explain, to capture, to paint my life and my brain and my place in the web of the world. I’ve spent the last several years of my life embroiled in one misunderstanding after another, and when I close my eyes those conversations are painted on my eyelids. And I can’t help but wonder if the reason for all that waste is that I thought everything was exactly as it seemed.

*********************

I had her backwards, for a while
as chasing black swans and making puzzles
but now
I think
she will figure out the puzzles, and learn how to be a black swan
maybe that’s what being a teenager is

**************************

But I’m not some idiot who’s entire high school career is wrecked with regret. Rather, I am, in at least one aspect, a perfectly typical teenager. This is what teenagers do. We chase black swans, and make puzzles for others to put together, and we look and wait for words we don’t have and, when we lose patience, we make up words that are almost good enough for the moment.

And then we learn that the point isn’t to chase black swans or make puzzles, but to take puzzles apart and put them back together and grow into the confidence necessary for becoming our own black swans.

I’m gonna quote from an essay I wrote for the newspaper last year.

Here’s another cycle. You go into a new situation for the first time, you do the best you can. Time passes, you grow, you mature, and you are embarrassed for who you were and what you did when you first came in. And then you change so much that you have to leave, enter a new situation, and start all over again.

But there’s something I’d like to stress. There is nothing inherently bad, inferior, embarrassing about which part of the cycle you are at. All parts are important, required, purposeful, and there is beauty in each of them. High school was ugly for me, but there were also moments of beauty, from the vermilion of my cheeks when I thought about She-Who-Must-Not-Be-Named to the hugs Alex stole from me, from calling my first show to going to my first party, from carving out niches for myself to the year when the niches became too confining.

And I wouldn’t trade any of it. Not my first flame-war, not my first troll, not the words that didn’t come out right or that I never should have said, and certainly not the mistakes and meltdowns that led to my breaks, my mistakes, my labels and my passions.

I’m a teenager. Teenagers nowadays don’t have Vision Quests compressed into one week; ours stretch on for years. And there’s a lot of uncertainty, a lot of false starts. Solid ground only comes back when you learn to fly in midair.

*************************

Lauryn

yes
i think so
and i think in that aspect of life, you are on level ground with everyone else
which i hope is a comforting thought

********************************

I don’t think I’m saying exactly what I mean here. I feel almost like I’m sitting in a shrink’s office again, staring at the white walls and pulling apart the spider plant and wishing there was a way to grind into their skulls that No, you don’t know. Not everyone goes through what I go through. They can’t. How could they?

Except now I’m not angry or confused.

Because we’re all more alike than different. And I may have felt like an alien, may have in fact been invisible, but at my core I was, I am, a kid learning to fit into her skin.

And so was everyone else.

And they made just as many mistakes as I did. But it’s okay, because mistakes are just twists on the road or sudden drops off of cliffs, and life isn’t always about moving in straight lines on solid ground. Sometimes it’s about dancing in midair.

Sometimes, the whole point is that you can’t breath and don’t know which way is up.

Order has no purpose and no place without chaos. And if adolescence is a time of putting things in order, than it must of necessity be a time of overwhelming initial chaos, and for most of us there will me moments when all the artificial arbitration we’ve imposed falls apart and we have to start all over again as the ground drops out from under us.

And you have to ask yourself:

is the goal to get everything under perfect control?

or is it to conjure some inherent beauty into plain sight?

And me?

I like the pictures I’m learning to paint.

Maybe I need to re-read Siddhartha–I think I might appreciate it more now. Maybe I need to look less for patterns, and more for hidden reasons. Maybe I need to focus more on the big picture. Maybe I need to tell myself that it’s okay if there is no picture. I definitely need to feel between my senses. Cultivate my patience.

And I’ve been wondering, as I’ve been writing this, how such thinking will help me when my meds don’t work. And the answer is that it won’t. (Without a little lift, the ballerina falls! ~ Next To Normal) But that’s okay. This sort of thinking isn’t, as I’ve always thought, about fixing my everyday ills or gaining control or even perfect understanding. It’s about who do I want to be? It’s about the fact that I love how I feel when I can relax and not fret about social interactions.

It’s about acceptance and rejoicing–not about being happy when all I feel is dead, but about damn it, this is my life and I WILL live it!

I will live.

******************************

Julia

yes

it is very comforting
to know that even the kids I idolize
are doing the same thing
perhaps in a more socially acceptable way
perhaps with different demons to wrestle with
and my pain and my troubles are mine, and I don’t think many share them
but
the underlying mechanism
and motivation
is shared
I like it
you’re finding the words too

On Glee

I’ve been rewatching the episodes of this season of Glee with my little sister (12 years old, sharp as a knife), and I’ve also been stewing over the critiques of Glee by Disability advocates and feminists. And I think I’m ready to express a few of my own thoughts.

First off, I will be the first to admit that Glee is far from perfect. This is a satirical show, but satire can still be offensive, and perhaps disability is not something to be satirized. There’s the issue of crip drag, the occasional illegal action, the harshly realistic portrayal of how people in America’s public high school system think and act and speak. Cracks are made about competing against the school for the deaf; the headmaster of said school is incredibly, damagingly obnoxious about his disability. The high school kids say “lame” and “spaz”; a style of dancing is compared to “cool epilepsy”. In other words, the students sound like high school kids, except that they don’t use the “r” word.

Which is, actually, is one of several steps Glee takes in the right (or, a new) direction.

On the issue of disability, for example, we have Artie, a wheelchair user. Artie sings (quite well), jokes, and is as fleshed out as his fellow minor characters Tina, Brittany, and Santana. If he were not in a wheelchair, no one would be crying foul on his limited screen time.

But for some reason, there seems to be a double standard among some disabled activists which dictates that, if a character is disabled, they must be a main character and they must represent disability perfectly and satisfy everyone and anything short of that is ableism. Which, frankly, is the equivalent to Shue’s whispered “Be nice!” to Sue when Becky tried out for the cheerios. It’s insulting, unproductive, patronizing, and hypocritical. I wish for a lead character in some show with a disability that’s perhaps a bit more clearly stated than House or Bones. Perhaps the absence of such characters reveals a deep-seated ableism in our culture. But I don’t think that the absence of such a character on a particular show automatically makes a show ableist.

Minor characters are minor characters. It’s cool that one of them has a disability. It’s even cooler that the minor character, who happens to have a disability, is fleshed out as a funny, interesting person who defies the traditional media stereotypes of disability. I’m counting this as a win for Glee.

The controversy over Artie seemed to erupt after the episode Wheels, in which Artie’s disability was a plot point. Some viewers  seemed to view it as a “very special after-school special” episode or The Disability Episode. And I guess my first thought was “well, they did a pretty good job”. They made a point about the problematic aspects of patronizing the disabled; drew some attention to the inaccessibility of the modern world for wheelchair users; and was notable for the pointed absence of the “r” word and the presence of actors with Down Syndrome.

Now, one could argue that they saw none of these messages. But that’s the wonderful thing about Glee–different people watch it and draw different conclusions. Perhaps we should see what the show’s producer wanted the audience to take away:

Series creator Ryan Murphy has stated that the episode is “the turning point for the show”.^[4] He elaborated: “Certainly, after this, it remains a comedy, and it’s fun. But writing this made me feel the responsibility of showing the truth of the pain that outcasts go through. It’s not all razzle-dazzle show business. It’s tough, and it’s painful, and it was for me growing up, and it is for most people. So I think this made me realize that amid the fun and the glamour, it’s really great now and again to show the underbelly of what people who are different feel.”^[4] Of his hopes for the episode and its ultimate impact on the series, Murphy commented: “If anything else, I hope kids who are that age can see that episode and maybe realize how hard it is for some people that they make fun of or tease. As we go forward, this episode has reverberations for the whole season. This is a comedy first and foremost. But we see the obligation to go deeper. This isn’t just a genre show to me. It’s about the desperate need for a place in the world and how we all fit in and how hard it is for some people to get by.” (Wikipedia)

In other words: not a Very Special Episode. Not really about disability at all. It’s about life and high school being rough, and being different, not being popular, being rough. And disability is used as a medium to convey this, as is Quinn & Finn’s fall from grace, or Kurt’s experiences.

And in that respect, it was very, very well done.

I’m not interested in talking about how Glee handles sex, gender, sexuality, or race. To be honest, that doesn’t really interest me. But I feel that Glee is getting an unjustified bad rap, and I hate seeing that happen.

On Manipulation And Popularity And Puzzles

Did you know that Mean Girls are actually twice as nice as they are mean?

Perhaps I should back up. To feed my ever-growing obsession with Glee!, (it’s not a real obsession. I just really like it) I was reading this article on the Newsweek website, which was examining the correlations between Glee!’s portrayal of high school social relationships and the reality.  The conclusion, shared by both the show and the essay, is that popularity in high school is a direct result of skillful manipulation–not necessarily manipulation of a Machiavellian variety, but rather a complex process resulting from an acute awareness of social relationships and power dynamics and leading to careful, conscious decisions that measure out just the right portions of kindness and cruelty to get their way, maintain or increase their status, and keep everything running smoothly.

Which was absolutely mind-boggling for me.

I’ve always assumed that my peers, in their interactions with each other, were motivated by some sort of mysterious mind-reading ability which allowed them to know exactly the right thing to say to one another at exactly the right time and allowed them to all converge exactly and spontaneously at the same time and place and have just gobs of fun with each other. I’ve watched shows like Glee! and 10 Things I Hate About You, and reacted with disbelief to the casual, direct conversations about popularity and social status. Neurotypicals don’t think that way! I protested silently.

But an emerging body of scientific research suggests they do.

To be sure, clinically defined empathy must play an enormous role, both within and without the context of social decision making. But the research suggests that another important factor, also lacked by many of us on the spectrum, is simply strategy.

For example. It took me two years–that would be until the summer after high school–to figure out that, if I wanted to penetrate the group of friends I saw everyday in English, philosophy, and theater, I needed to actually join them at the spaghetti dinners and Office nights. I needed to actually give out my cellphone number, and then check my cellphone. And this is strategy on the most basic of levels. I know that I need to reinforce behavior I like in order to ever see it again, but how to extinguish behavior I object to, or in other ways shape and mold my friends to get what I want? This is beyond me. Some days I have enough topics and scripts to make a basic conversation. Other days I don’t. And how to make a conversation actually take a pre-determined route? That is baffling.

Everywhere I look now, I see strategy. This can sometimes look like a powerplay, I suppose, although I don’t recall ever actually seeing those. But large parties? Strike me as an excellent way to avoid empty conversational spaces. If you have twenty people in one house, you are all but guaranteed protection from limited conversational skills. You never have to face the limits of your social abilities if you are constantly bouncing from person to person. You get consistent reinforcement as a prosocial being, and so do all of your guests, and so the night is a success! Perhaps the awkward, empty silences I always encounter are not my fault. Perhaps my conversational partners are just as limited. They simply are strategic enough to avoid frequent reminders of this.

And the parties (or large group gatherings, or whatever you wish to call them. Revels.) serve another purpose. They create a shared ethos, pathos, memory, collective consciousness, whatever you want to call it, a collectivity and commonality of experience.  The immediate benefit of this I see is the generation of extra material with which to fill conversational gaps. But a closeness, a camaraderie is also generated, binding everyone together, strong together, turned inward, defense layers sprouting up against outsiders. Not necessarily intentional, but certainly very strategically and socially beneficial. You can only have so many friends, there can only be so much chaos, there must be order in every ecosystem.

In the end, there is a simple joy that binds them together, and it reminds me of the resonance structures I’ve been reading about for chemistry, where a molecule moves so fast that we can’t pin down its exact structure, and even if we could our models can’t hold it, so we just draw two or three different structures and move between them. There are no words, no explanations, no descriptions or models for their collective joy. It’s just there, ever present and evanescent, making up the very fabric of their universe. On an atomic level, these kids are pure joy. On an atomic level, they move and resonate together. On an atomic level they are singular, united, and it’s only my poor human vision that tries to separate and reduce them into unique human beings.

If I want to get along with them, I have to learn to work them and relate to them as a group. I have to let go of my silly Fourier-transform vision and see things on the atomic, universal, essential level. I have to stop trying to befriend them individually, and start working on loving and being loved by the group.

I don’t know how to do that. My social skills books, my social stories and my socialization groups are all about the rules for connecting to and getting along with individuals. The skills that a teenager like me needs? Apparently can’t be taught.

So I fumble along, and feed them sugar and praise, and hope I come out ahead in the end.

Is all of this planned, or is it subconscious? I am confident that strategy plays an organizing role, but how articulated is that role?

I don’t know. I just know that I always come late to the party, and by the time I’m ready to fellowship, the lines have already been drawn and I’m nothing more than an invasive species. I’ve seen, experienced, wept over this countless times. It’s happened in shows, in classes, even in online communities. There are strategies for making and keeping friends and groups that simply aren’t spelled out and, even when they are, are rarely accessible for an Autistic lacking any sense of strategy,  any pleasure in or ability to handle being in a group, or any ability to manage the sensory and political demands involved.

Are television shows exaggerated, caricatures, articulating what is never actually said out loud? Undoubtedly. But they’ve shown me another piece to the social puzzle, another facet I no doubt annoyed and perplexed everyone by never appreciating.

I’ve read that the nature of social relationships shifts seismically during puberty. Perhaps this is where the strategies first come into play and are honed and developed.  Perhaps this is why friendships in high school stopped making sense. Perhaps this is why Asperger’s is so often diagnosed late, in adolescence–because until then, our differences in social cognition aren’t nearly as blinding and cripplingly obvious.

The symbol for Autism, in the media, is a puzzle piece. I think it should be, instead, someone picking up a million pieces from a thousand different puzzles and trying to put them together. Because it seems that this is all I ever do.

What Is Ableism

I’m realizing that, while I can pretty easily identify an action as ableist, I don’t actually have a working definition of ableism. Which does not strike me as being in accordance with the intellectual rigor with which I wish to lead my life.

My attempts to find a good, solid definition have so far been unsuccessful. I want it to keep in mind the Ladder Of Prejudice, and I want to distinguish between ableism and simply being….what’s the word….normatively-abled-centric? That’s a made-up word. But I find it to be an important distinction.

So if there’re any good articles or anything you’d recommend to me, perhaps let me know?

I’m returning to my internship this January, which is exciting. I’ll get to see all the kids and teachers again, and meet a new kid. It’ll be fun. It’s going to be a full-day affair, so it will also probably be exhausting. I’m looking forward to this ability to test-drive my potential career though.

I’m learning ASL. At my school, it is a battle to get ASL recognized as a foreign language. Old English, however, has no such difficulty. The absurdity, it’s overwhelming.

And finally, next semester I’ll be writing a series of columns about disability issues for the school paper. Versions will be available here as well, of course. In fact, I think I’ll go start the first one!

The Religion Post

I’ve goon back and forth on publishing this a dozen times. It’s personal, it’s embarassing, it’s difficult for me to articulate and understand. But I also think it’s important, and it illustrates how Spectrum inhabitants can react to such a seemingly positive thing as religion. So here it is. The story of me and God.

You should know, before reading, that I have an ASD, OCD, and a psychotic disorder. They’re hard to tease apart, but this was the very rigid neurology with which I encountered religion.

I’m not sure what I remember about the early stages of my religious life. Atheist father got along with Evangelical mother, but he wasn’t home much. Went to church and Sunday school every week. And I was Autistic, so very black-and-white, literal thinker.

Bad combination.

By eight, I had some pretty fucked up beliefs. Most of these came from reading my mom’s conservative Christian parenting manuals—manuals that were never really followed, thank God—which were all about, you know, a punitive God who was going to zap you all the time, so better your parents save him the trouble and zap you first. Maybe that’s not what the writers intended, but it’s what I took away. I prayed the sinner’s prayer maybe five times a day? I thought it was a sin for women to wear pants. I was so conservative, it made my mother nervous.

It’s embarrassing to remember.  I don’t know how to explain it, how to sort through it, except that, being a vulnerable and very Autistic child, I bought wholesale into this worldview that was presented to me, by books, the internet when I could access it, and a family or two we were friends with. This was a worldview where the wives submitted to the husbands, where birth control was not used, where kids were homeschooled and swats were doled out if you didn’t obey with a “happy heart”, where sex was saved until marriage and modesty was king and all of this was absolute, positive, biblical fact.

You know how Autists have a Special Interest? This world was mine. I researched it for hours a day, for years. It took over my brain. I knew exactly how to be a perfect wife and mother. How to be the perfect, God-fearing Christian. My life positively revolved around this shit.

There was a sort of morbid fascination with my friends, who lived in fear of their parent’s switch. I didn’t live in that sort of environment, but according to what I read, I should. I wondered, obsessed over, what their life was like. I blamed my brother’s incessant rages on my parent’s techniques, and I wondered how our life would be different if they just followed what the books said. I dreamed of it.

And part of it was tangled up with my earlier obsessions with Laura Ingalls Wilder and the Amish. I wanted that life for myself, or I thought I did.

How did I deal with the fact that the world did not work this way, that my Dad never went to church and my mother could barely raise a hand to us and everyone wore pants and no one covered their head? How did I deal with the distinct lack of farm animals, with the way the world kept getting more and more complicated and messy?

I withdrew further into my fantasy land. I spent hours on the internet, bouncing from one conservative Christian site to the next, learning all about child discipline (this was a major theme, as it would have affected me the most. I was sickly fascinated with it.) and homeschooling and everything. I built for myself a new world which worked much better, much more consistently, all in harsh blacks and whites, where I was always the pure, moral center and the world around me was well-ordered. I withdrew so far that I think I scared my parents.

So they sent me to school.

Except they sent me to this dreadful parochial school called Trinity Christian Academy. Where they prayed for my healing. Where I hid under the desks. Where I was shamed for asking for prayers for a great-aunt dying of cancer. Where I was bullied mercilessly, and all the good, Christian peers I had always dreamed of turned out to be boiling over with sin.

There’s this concept of spiritual abusiveness. This is the school that defined it.

I don’t remember much about that school.

So next year I went to public school. One of my classmates was a Wiccan. All of them swore; some did pot. Yet I was treated far, far better here, in this den of iniquity, than I ever had been by any church.

My brain exploded.

I think this was the first year I thought of killing myself.  Which, of course, you went to Hell for. But I was beginning to realize that something didn’t make sense. That I didn’t want my classmates to go to Hell.

I’m not sure of the timeline here, but I believe that in seventh grade I found an online website called Sheroes—yes, it was the summer between sixth and seventh. This Sheroes was a very liberal site, full of pagans and whatnot. And I started to change. I had new interests now. I was reading new books. And I was realizing that there was a world full of very nice people who absolutely did not deserve eternal condemnation.

And so, by Ninth grade (I skipped eight), I wasn’t a Christian anymore.

There are things I’m leaving out. By the time I was ten, I had a lot of burning theological questions that no one could answer—questions about the Law, and Sin, and Mental Illness—I was diagnosed just OCD at the time—questions about God and eternal life. But I couldn’t ask them correctly, and no one could answer them. We changed churches, looking for someone who could answer me. No one could. I was at the top of my confirmation class, but by the end I knew I didn’t believe a word.

I was 13 then?

Then there was the fact that Good Christians Do Not Worry, and I did, incessantly. And that I almost got exorcised, I think. Faith-healed again, at the very least.

Giving up my faith…

I wish I could remember exactly when it happened. By the end of seventh grade. And it was terrifying. I spent nights crying, sure I was going to hell. But I just couldn’t do it anymore. I couldn’t trust a God who never answered. I couldn’t live with all of this theological uncertainty. I couldn’t condemn my friends to Hell. It was an inevitable fact of my life. I couldn’t be a Christian anymore.

God, it must have happened earlier. Before seventh grade, even?

That’s my story. At least, my tale of rejecting this old worldview. It’s embarrassing and painful and hard to understand, too. And it’s why I cried at the play when they had the rape/revival. It brought back all these memories of this world I lived in where that sort of thing was okay.

It was such a huge part of my life. SO huge. And then I went to public school, and started reading new books, and my obsession got broken: was that why those grades were so hard? Because I was living in two worlds? And I had to find the strength to chose one. To reject something that had DEFINED me for most of my life.

I did it.

I was a pretty strong twelve year old.

The story gets messy after this. This was the dark cloud; next comes the wreckage from the tornado. Maybe I’ll go into it later.

I’m all wrung out for now.

Out Of Place

I don’t think I’m liberal enough to be a disability-rights blogger.

I lack the essential strain of radicalism.

Evidence:

I love the show Glee! and all it’s cringe-worthy glory. I don’t find myself moved to outrage by the idea that Sue’s sister is being used to humanize her.

I write essays about the “r” word and ableist slurs, but I feel that the language has changed sufficiently that “idiot” and “cretin” no longer carry such ableist overtones. I’m on the fence about “lame”.

I will use people-first language if requested, but I identify as an Autistic woman and the kids I work with are disabled, rather than incidentally having disabilities.

But mostly, a lot of the things that seem to be enraging the bloggers I respect the most simply don’t strike me as a huge deal. Or I don’t understand where they are coming from. I don’t think they are being silly, oversensitive, or vageuly ridiculous. I just don’t understand, I just don’t get as excited.

And it’s a weird place to be.

I’m radical enough that I get uncomfortable listening to my peers sling comments back and forth, radical enough that I oppose Autism speaks and use words like intellectual disability and ableism.

But I don’t feel the need to be more sensitive than that with regard to my language or my media. It’s not that I think such sensitivity is wrong, it’s just that I don’t feel a place for it in my life.  It’s like religion to me–interesting to think about and study, but not something I’m willing to embrace and assimilate into.

Does that make me a bad person?

What I’ve Been Reading

I’ve been spending, perhaps, more than my fair share of time lurking about in the Autism Rights/Neurodiversity blogsphere. Still learning how to comment, and practicing at that. But I’ve come across some gems while I’ve been at it.

Like this.

Countering Age of Autism is an excellent blog, in general. I shall have to add it to my blogroll on the right.

Left brain/Right brain is always interesting.

ABFH has a new post up on Eradicating Autism Speaks.

The Autism Acceptance Project is glorious. Lots of good links!

I am intrigued by Disability Is Natural. I don’t use people-first language personally, but I certainly respect those who do. Perhaps I should blog about that. Hmm, more posts about language?

Explore and enjoy!

“It’s Not Just A Word” Final Draft

This is the final draft of the essay I prepared for my Politics of English class.  You can  read the first draft here. This version, I feel, is substantially better. Errors in the bibliography have been fixed, further details on the horrors of the Judge Rotenberg Center have been added, and the piece has been restructured and in some parts re-phrased. I am aware that it is unorthodox to publish multiple versions of a document, but that’s just how it happened with this one. And without further ado, here it is.

 

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It’s Not Just A Word: On Ableist Slurs

 

…there is an incredible amount of hatred towards the class of people who wear the label “developmentally disabled.” … As if just being suspected of being “subnormal” was itself a crime. Just how horrible is it to be considered part of the population that struggles to learn? -David Hingsburger “On Apology and Pain.” A Little Behind

 

Enter any American high school, and listen to the dialogue. Count the number of times a foolish peer is called a retard, how many homework assignments are retarded, and, coincidentally (or is it a coincidence at all?), how the special education students, students who very obviously look and speak like someone with an intellectual disability, who perhaps even have a medical diagnosis of mental retardation, are shunted aside and ignored. Could the two be connected? Could the thoughtless and abusive language used to refer to intellectual disabilities actually construct a world in which the disabled are neglected if not abused? The idea is not without precedent; Alleen Nilson argues that the words we use and the way we use them serve as a window to our thinking, saying

Language and society are as intertwined as a chicken and an egg. The language a culture uses is telltale evidence of the values and beliefs of that culture. (Nilsen)

I agree. Our current linguistic habits reveal the complete and utter lack of appreciation and respect our culture holds for the intellectually disabled, and by writing them off with our words, we condone centuries of their mistreatment and all but ensure them an equally bleak future. As a disability-rights activist I work to change this, and my work has brought me to one inescapable conclusion: if the goal is fair treatment for all, regardless of ability or intellectual functioning, then the first steps taken must change the way we talk about intellectual disability from vulgar abuse to respectful dialogue.

As Nilson says, the words we use speak volumes about our underlying beliefs and attitudes. So what does it say when a special education teacher refuses to utter a child’s diagnosis of Mental Retardation aloud because she chokes on such an ugly word? What does it signify when the word we use for intellectual disability is also a slur? Slurs are used to distance, dehumanize, and discriminate against a group of people; what does this say about our society’s attitudes towards the disabled? Are they even viewed as human? Amanda Baggs, a nonverbal Autistic woman and diagnosed “idiot-savant” who has faced abuse all her life for the crime of her disability, types “A lot of people think that cognitively disabled people are not full persons.”(Emphasis added)

The facts certainly seem to support her position. Abuse of the intellectually disabled is rampant in our society. At the Judge Rotenberg Educational Center, intellectually disabled students receive electric shocks for misbehavior such as “getting out of their seats without permission” (Gonnerman, 6). One student received upwards of 2,000 shocks in one day; the youngest of the victims are nine years old. But perhaps this school is safer for a disabled child than the school in Texas where intellectually disabled young men were forced to fight for the entertainment of the staff. And at the very least these nine-year old shock-boxes are alive; as late as 1982 two respected physicians noted that “It is common in the United States to withhold routine surgery and medical care from infants with Down’s syndrome [sic]for the explicit purpose of hastening death.” (Hentoff, 263) These same two physicians withheld critical care from forty-three babies over two-and-a-half years (Hentoff, 267). Infants lucky enough to survive would be shipped off to be shelved in institutions where they underwent forcible sterilization and had their teeth yanked out.

The reality, it quickly becomes apparent, is that intellectually disabled persons are not respected or valued in our society, and they never have been. The armchair humanitarian can argue that important progress has been made; the children I know with Down Syndrome, abused daily on the school bus, do not have that luxury. They can see that there is a clear stratification of status and power between people of average or higher intelligence and people with intellectual disabilities. After all, we don’t insult someone by calling them gifted. Typical cognitive makeup is not used as a joke, an insult, or a slur.

Cognitively typical people hold all of the power here. This is a literal fact—there are no disabled people operating the shock packs at the Judge Rotenberg Educational Center; they are too busy being hooked up to the electrodes. But the reality doesn’t have to be this way. In many important ways, it isn’t. People with Down Syndrome are now going to college. Autistics are forming their own self advocacy organizations. There are now intellectually disabled people advising for Special Olympics, appearing in movies, composing music, even running their own businesses. They are advocating for themselves, and for change. And among the first items on their agenda?

Language.

The campaign to end the “r-word”, sponsored by Special Olympics, seeks to put the word retard on the same plane as nigger. Not because swapping intellectual disability for mentally deficient will end all of the abuse and discrimination, but because it will signal that the status categories have changed. The day that a discriminated group gets to define itself on its own terms, the day that a discriminated group stands up and says you cannot talk about us like that, is the day change starts.

Language is political, a “clue-swapping exchange” of meaning and status and power dynamics (Trudgill). If current power misbalances and stratifications based on ability are going to change, language provides a natural place to start. If we want society to think of cognitively different persons as people, we need to speak of them as such, with respect and dignity. We need to use words that clarify the disability rather than dehumanizing the person. We need to recognize that slurs can be ableist as well as racist, and we need to erase these slurs from our vocabularies. We need to recognize the power dynamics and implicit assumptions at work here, and we need to address them head on. But first and foremost, we need to stop saying retard.

 

 

Works Cited

Baggs, Amanda. “On Being Considered “Retarded”.” Youtube Youtube, 31 Oct. 2006. Web. 4 Nov. 2009 <http://www.youtube.com/watch?v=qn70gPukdtY >.

“Disabled men forced into ‘Fight Club’ battles: police.” ABC News ABC, 11 Mar. 2009. Web. 4 Nov. 2009 <http://www.abc.net.au/news/stories/2009/03/11/2512709.htm>.

Gonnerman, Jennifer. “School of Shock.” Mother Jones Mother Jones, 20 Aug. 2007. Web. 4 Nov. 2009 <http://www.motherjones.com/politics/2007/08/school-shock>.

Hentoff, Nat. The Nat Hentoff Reader. New York: De Capo Press, 2001. 263-67. Web. 9 Nov. 2009. <http://books.google.com/books?id=0A6RJlFY2XcC&pg=PA263&lpg=PA263&dq=the+awful+privacy+of+baby+doe&source=bl&ots=MuBAsU21sk&sig=_w5xx7UtUHvzgC7KSMcz_57WZ38&hl=en&ei=vcj4SrmNK8aWtgf8_Pm3Cw&sa=X&oi=book_>.

Nilsen, Alleen P. “Sexism In English: A 1990s Update.” About Language. Eds. William H. Roberts and Gregoire Turgeon. Boston: Houghton Mifflin Company, 1998. 50. Print.

Trudgill, Peter. “Sociolingusitics.” The Politics of Language. Ed. Holly Davis. Northampton, MA: Smith College, 2009. N. pag. Print.

 

 

It’s Not Just A Word

…there is an incredible amount of hatred towards the class of people who wear the label “developmentally disabled.” … As if just being suspected of being “subnormal” was itself a crime. Just how horrible is it to be considered part of the population that struggles to learn? -David Hingsburger “On Apology and Pain.” A Little Behind

 

Amanda Baggs is a nonverbal Autistic woman, a diagnosed “idiot-savant”, and a champion of disability rights. In one powerful example of her work, entitled simply “On Being Considered “Retarded” ” she types “A lot of people think that cognitively disabled people are not full persons.”(Baggs, 2006, Emphasis added) At first glance this is quite an audacious claim. But enter any American high school, and listen to the dialogue. Count the number of times a foolish peer is called retard, how many homework assignments are retarded, and, coincidentally (or is it a coincidence at all?), how the special education students, students who very obviously look and speak like someone with an intellectual disability, perhaps even a diagnosis of mental retardation, are shunted aside and ignored. Changing the language we use may not alleviate all of the very real discrimination against disabled people, but it starts a conversation and sets an important tone.

Language and society are as intertwined as a chicken and an egg. The language a culture uses is telltale evidence of the values and beliefs of that culture. (Nilsen)

The words we use and the way we use them serve as a window to our thinking. What does it say when a special education teacher refuses to utter a child’s diagnosis of Mental Retardation aloud because she chokes on such an ugly word? What does it signify when the word we use for intellectual disability is also a slur? Slurs are used to distance, dehumanize, and discriminate against a group of people; what does this say about society’s attitudes towards the disabled? Pick up a paper and read about the Judge Rotenberg Educational Center, where intellectually disabled students receive electric shocks for misbehavior. Read about the school in Texas where intellectually disabled young men were forced to fight for the entertainment of the staff. The reality, it quickly becomes apparent, is that intellectually disabled persons are not respected or valued in our society.

There is a clear stratification of status between people of average or higher intelligence and people with intellectual disabilities. After all, we don’t insult someone by calling them gifted. Intellectually normative people aren’t described as children in the bodies of adults, and thirty years ago they weren’t being forcibly sterilized. Most of all, their cognitive makeup is not used as a joke, an insult, or a slur.

Cognitively typical people hold all of the power here. This is a literal fact—there are no disabled people operating the shock packs at the Judge Rotenberg Educational Center; they are too busy being hooked up to the electrodes. But the reality doesn’t have to be this way. In many important ways, it isn’t. People with Down Syndrome are now going to college. Autistics are forming their own self advocacy organizations. There are now intellectually disabled people advising Special Olympics, appearing in movies, composing music, even running their own businesses. They are advocating for themselves, and for change. And among the first items on their agenda?

Language.

The campaign to end the “r-word”, sponsored by Special Olympics, seeks to put the word retard on the same plane as nigger. Not because swapping intellectual disability for mentally deficient will end all of the abuse and discrimination, but because it will signal that the status categories have changed. The day that a discriminated group gets to define itself on its own terms, the day that a discriminated group stands up and says you cannot talk about us like that, is the day change starts.

Amanda Baggs types

My objections to the way people are underestimated are not tied to whether the people fit some word called ‘retarded” or not, they’re about people’s humanity not being recognized.

Language is political, a clue-swapping exchange of meaning and status and power dynamics. If current power misbalances and stratifications based on ability are going to changed, language provides a natural place to start. If we want society to think of cognitively different persons as people, we need to speak of them as such, with respect and dignity. We need to stop calling them retards.

 

 

Bibliography

Baggs, Amanda. “On Being Considered “Retarded”.” Youtube Youtube, 31 Oct. 2006. Web. 4 Nov. 2009 <http://www.youtube.com/watch?v=qn70gPukdtY >.

“Disabled men forced into ‘Fight Club’ battles: police.” ABC News ABC, 11 Mar. 2009. Web. 4 Nov. 2009 <http://www.abc.net.au/news/stories/2009/03/11/2512709.htm>.

Gonnerman, Jennifer. “Disabled men forced into ‘Fight Club’ battles: police.” Mother Jones Mother Jones, 20 Aug. 2007. Web. 4 Nov. 2009 <http://www.motherjones.com/politics/2007/08/school-shock>.

Nilsen, Alleen P. “Sexism In English: A 1990s Update.” About Language. Eds. William H. Roberts and Gregoire Turgeon. Boston: Houghton Mifflin Company, 1998. 50. Print.

Stray Thoughts

A much, much better description of the social model of disability than I have provided can be found here. I’m mostly posting it so I’ll remember it. It’s so easy to get confused and have my words twist up when I’m discussing a new idea, but this explanation  brings my stray thoughts back on track.

Speaking of stray thoughts, here are a few of mine (all autism/disability related: my thoughts on Chemistry and Karl Popper, for example, get turned into essays for class!)

1. “I never would have guessed”

I get this a lot when I tell someone I’m Autistic, even after I clarify that it’s Asperger’s. Now, I suppose I should not be surprised or worried about this statement–after all, few people have as finely an attuned Autist-radar as I do.  A simple admittance of deficit should not sound like a threat to me.

But it always does.

Because people have this tendency to not believe me. I have to prove myself every time, and waving a doctor’s note under their nose is rarely enough. No. I have to struggle to find the right words to make them understand that yes, I am doing an amazing job of passing, of faking it, but it’s damn hard and my ability to pass does not negate my disability. That there are two worlds I inhabit, the stimmy one inside my head and the smiling one you see in class. The explanation I’ve found most effective is simply to tell that what I have to do in order to pass, and what I cannot do.

What I Change In Order To Pass.

How I walk.

My natural body language.

How I respond to stress.

What I say.

How I say it.

What You See When I’m Passing.

You see someone who walks on the flats of her feet, who talks with her hands and sometimes flaps them for a second before she snatches them to her side. You see a girl who taps and touches things more than normal, who’s always bouncing her legs or doodling in her notebooks. This girl doesn’t look at you very often, and she may seem aloof or rude, but that makes no sense, because she’s always smiling. She says some things that sound weird and off more often than not, but she’s also pretty intelligent, and she talks fast and with great apparent confidence. She is open and friendly with you, but you get the feeling that she thinks you’re closer than you are. She’s okay–interacting with her isn’t painful, but it’s less rewarding than interacting with your friends. Not enough for you to consciously notice, just enough for you to forget to invite her to things. After all, she rarely initiates conversation, unless it’s on something she’s thinking about.

She’s just another person, nothing special.

And Here Is What My Head Is Like.

Want to flap, want to spin, want to jump, but no, no, can’t do that. Stop tapping on the table, stop pushing the lid on your mason jar of water, look at Nalini when she talks to you, check in with your eyes. Do I have a script for this? Oh no, I don’t, what am I going to say? Just say it. Oh, well, that came out wrong. That’s not what I meant. Fake it. Fakeitfakeitfakeit. Oh God, she hates me now doesn’t she. That was so dumb, why did I say that. That was the wrong things to say. I hate talking. Oh no, where are we? Wait for others to speak. Waitwait. I didn’t understand that. Fake it. Seemed funny. Laugh. Throw something out. Make them laugh so they won’t eat me. Fakeitfakeitfakeit.

What I Can Do.

I can change how I walk. I can keep most of my natural body language bottled up, only letting little bits leak out–the averted or fluctuating gaze, the hands flapping when I laugh or painting when I talk, the facial muscles never quite moving right. I can smile all the time, I can listen to the sounds people make and watch their movements and maybe pull some information out of that. I can laugh and trivialize what I’m saying so that, if it’s wrong, people won’t mind. I can throw out some generic words strung together to make people laugh or relax. I can, sometimes, be a part of that intricate little dance of meaningless supporting gestures that tie people together, although this is a recent discovery.

And that’s a lot. I can do more than a lot of people.

But.

Here’s What I Can’t Do.

I can’t engage in what’s called “rapport talk”–when the conversation stops being two partners sharing reports, and turns into something between friends. I can’t make people remember me, connect to me, and want to have fun with me. I can’t fill up empty conversational spaces. I can’t figure out what people are thinking, although I often know what they’re going to say–simple pattern analysis, you’d think it would help me mindread, but it doesn’t. I don’t know the exact right thing to do or say. I can get along with everyone except my peers, unless I can’t figure them out either.

I live in a world of constant social phobia and paralysis. My brain is filled with cognitive distortions that prevent me from getting to the truth of a given interaction. But unlike a simple anxiety disorder, these distortions occur because I truly do not understand how people work or what they think of me. I do the best I can with the tools I have–but these tools are ill-suited for the job, and give me nightmarish meanings for everyday exchanges.

And I guess what I’m getting to is this. It’s all well and good for someone to not believe I am disabled. But they’ve never spent a time in my head. They lack any and all understanding of how I think–and Autism is a brain disorder. It’s all about thinking. They can say I’m normal, but it’s impossible that everyone feels and thinks this way all the time. They look at me and assume that their neuortypical mind-reading skills will work on me. Of course they come away with the wrong answer!

2. Desire To Be Around People

This is something I struggle with finding words for a LOT. On the one hand, I really want to be included in people’s lives. When a group of my friends gets together, I want to be there. But I don’t know why. It’s not like I fit in, or connect, or have a whole lot of fun. Do I want to connect? Yes, maybe. I don’t know.

I really just don’t know.

And I’m expected to. But I don’t have an answer for it, or even the words to go looking for one. All I have are pits in my stomach when I get left out, and a manic, flapping feeling when I’m brought in–if it goes well. All I have are two years of theater wherein I watched everyone else clump together into an impenetrable knot, where I was appreciated in my place, but any attempts to break in where rebuffed. If I don’t want to connect to people, why did that hurt so much? Why can’t I be like Bones, like the stereotypical Autie, and simply not care?

Is it that I care, not about the connection, but about the rejection? About the principle of it all?