March 12, 2012

The Gift of a Label

Posted in Marginalization, Reality, Uncategorized tagged , , , at 12:28 pm by chavisory

The last several weeks have brought a series of unfortunate articles, op-eds, and blog posts trivializing or dismissing the validity of or need for the Asperger’s Syndrome diagnosis—usually in some kind of misconstrual of what it means that the designation is being removed from the DSM-V in recognition that it’s redundant with “high-functioning” autism.  These pieces often contain, or inspire in the resulting comments and letters to the editor, a raft of responses to the now widespread recognition of Asperger’s Syndrome—along with other invisible disabilities, learning disabilities, and subtler neurodevelopmental conditions—along these lines:

“Why do we have to pathologize everything?”

“Why can’t we just appreciate people for who they are?”

“I don’t want to label my child.”

“Labels are for soup cans.”

“But everyone has quirks.”

“Didn’t we just use to have a broader conception of normal?”

“Aren’t we all just human?”

I want to explain why these make me violently annoyed.

And there was a time when I might even have said the same things.  When I would have given a lot just to be treated like everyone else.

But eventually I realized that is not what people mean when they say that.  What they really mean is usually one of two things:  First, that “I don’t, can’t, and shouldn’t have to try to understand how things are truly different for you.”  They don’t want to, or can’t, recognize that other people’s experiences, needs, or abilities can be very different from their own and yet equally real.

It says they’d rather deal with the superficial and they’d rather you be superficial.  Preferably in ways that make them comfortable.  It’s an alternate take on “but you don’t look disabled.”

Or, second, it means they don’t understand that it isn’t the label that makes someone different, or makes other people treat them differently; that it is the underlying condition itself that makes someone different, that is the reason they function differently, and that makes you know you are different.

And I did know it, at a very early age, and even when no one else would admit it.  Don’t kid yourself that we don’t know we’re different if no one tells us.

It’s the label for a condition that confers the knowledge that what we’re going through is known and recognized and survivable.  That we are within the realm of human experience.  That there even is such a thing as we.

*****

To be denied a name means having your very existence as a person who has a certain experience undermined, denied, and even disallowed.

The fact that we have words for things is an acknowledgement that those things are real, that they are part of our world.  George Orwell knew this when he wrote 1984, in whose dystopic language system, Newspeak, words for concepts that Big Brother doesn’t wish people to be able to describe are systematically stricken from the English language, so, for instance, without a word for “freedom,” no one will be able to conceive of the thing itself.

I also find it striking that in so much literature concerning magic, magical ability turns on a wizard’s, elf’s, or magician’s knowledge of true names, or true language.  To know the true names of things is to have mastery over your world.

It’s not just what you are, but how the world works for you.

Try going through your life every day, being able to tell that things simply don’t work for you like they do for everyone else.  That you can try to do everything exactly the same way that normal people seem to, and yet somehow it just doesn’t work for you like everyone says it should.  From the way shoes fit to the way sales clerks treat you, how food tastes and feels, how your brain organizes information and how medications work (or don’t) to the color saturation of the natural world to the essential nature of reasoning, time, and memory; to the fact that no one ever quite understands anything you say.  Then tell me you don’t need an explanation.  Then tell me that you wouldn’t give anything for one word to tell you why.

Or imagine the single most true thing about yourself.  Whatever that is for you.  The most true word that springs to mind when you think “this is what I am in the world.”

Now imagine that everyone in your life denies that it’s real, or even possible, yet finds a way to punish you every day of your life for functioning in accordance with it.

I know what it is to be told day after day, in ways large and small, “real people don’t work that way.”

Since I have a label, I know the world I belong to is real, and the people I belong to are real.

That there are people I can go to for support and advice, and they know what in the hell I’m even talking about.

That somebody else’s child doesn’t have to do what I did thinking they’re alone in the world.

I doubt I can make you feel what a miracle it is, if you’ve never lived without that.  If you’ve never been without the ability to hear another person say “I know,” and know it was true.

That’s what it is for me to have a label.

*****

And then there’s this rationalization being thrown around that all of these people who shouldn’t really be labeled with an ASD—regardless of whether all of their characteristics do add up to autism—can be re-classified and receive services for all of their various subordinate learning disabilities and other issues, which just have other names like “non-verbal learning disorder,” or “social communication disorder,” etc.

But here’s the problem:  I am not simply an amalgamation of all of my various quirks, disabilities, and learning/perceptual/emotional/physical differences.  I’ve made that list.  There’s not another category that even could better account for what I have.  I knew all of the various traits that made me hopelessly different, but without being able to know why, and it had me actually formulating hypotheses of how I was really a fairy being and not human at all—some highly unlikely genetic throwback to an unknown species, older and distinct from modern humans—of which I was the only one left.  (Kind of like how if you backcross zebras for long enough, you get something that looks a lot like a quagga.  I identified with Henry the quagga for a long time—a creature that wasn’t supposed to exist anymore, but somehow, sort of, did.)  I literally, seriously believed that I was the last fairy on earth because it was the only remotely coherent explanation I could come up with on my own.

The word “loneliness” doesn’t really begin to name that way of existing.

So, yes, you can just like and appreciate me for who I am.

What you cannot do is treat me as a whole person by trying to remedy separately all of the difficult traits that come with what I am.  Because that is what turns a person into nothing but a collection of flaws.

No, you cannot “just accept someone for who they are” if you have no intention of acknowledging what that actually is.  You cannot do that while you deny and belittle what somebody is actually experiencing.  You cannot do that if you see acknowledging disabilities as a shameful thing.

No, you cannot just accept someone for who they are, if what you mean by that is the exact opposite.

*****

“But imagine the effect on a child of being told your brain works in a way it doesn’t.”

“I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.”

I don’t want that either, and I don’t have to imagine.  I was constantly being given a description of my mind that wasn’t true.  It is a terribly alienating and disheartening experience.  We should obviously endeavor not to misdiagnose people.  I was misdiagnosed with some other things: being able to speak but just not wanting to, depression, dysthymia, and being a control freak perfectionist who just didn’t want to admit I wasn’t unique and whose standards for humanity were too high.  I know firsthand the harm of misdiagnosis.  I am not denying that misused labels can be damaging and prejudicial.

But there is no evidence that ASD’s are systematically over-diagnosed by professionals.  What I do see happening is that mainstream pop-culture does not truly understand what ASD’s are, and so misinformed laypeople speculate baselessly about odd personalities like Al Gore, Warren Buffet, Bill Gates, etc., based on shallow (and frequently false) stereotypes.  When these writers wrongly conflate this cultural trivialization and misappropriation with rampant over-diagnosis to argue that Asperger’s Syndrome (or any invisible disability) is a dubious and unnecessary designation, they contribute to the very trivialization they claim to be opposing.

*****

In my last production, a character says with sad resignation near the end of the play, “There is no word for what I am.  I have looked.”

And that’s what you perpetuate when you deny or scoff at the use of a word for what someone is, or what they have, or what they identify with.  You say “you don’t need a word for what you are.”  You say that your wish for denial takes precedence over theirs for self-knowledge, acceptance, practical information, treatment, or however they need to deal with the truth.

And If you’ve never needed a label, needed a word, needed a name, and not had one—or as Emily Willingham wrote last week, “If you have not lived a life like that, one that has been bereft of an emotional glue that groups you with others who feel as you do—then you are privileged indeed.”

If you have not lived my life, you do not get to decide that I don’t need language for the experience of it.  You do not get to say “there is no word for what you are,” that “there is no word for what you share with other people,” when there is.

Because there is.

December 27, 2011

If you can’t…

Posted in Marginalization, Reality tagged , at 12:04 am by chavisory

I think I never intended to write this post.  It’s personal, and it’s a hissy fit, but one I felt a certain responsibility, the more I reflected on it, to transcribe.

I was diagnosed with Asperger’s Syndrome last year, which most of you probably know because I talk about it on Facebook enough, because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of.  (I’d known the truth for several years before I sought out a correct diagnosis; a few people knew, but I didn’t talk about it much, for fear of a lot of things.)  I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me.  Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.

Anyway, so I’d started to think of it as old news that I was autistic.  I’d started to settle in to living as a whole person, without an emotional double life.  Then last night, I was rather emphatically asking my mother not to describe a young relative, currently in the process of being evaluated for autism himself, as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.

“But you’re not autistic.”

Which is where my brain froze up.  Because honestly?  I don’t know what else I am.  Everything comes home to that.  Everything. Before I understood what AS really was, I didn’t know what I was at all, except for lost and completely alone in the world.

“I don’t think of you as really autistic.”

This is everything I didn’t have it together enough to say at the time.  This is what I’d say going forward:

If you can’t see me as autistic, then you need to revise your view of autism.

I am “not like that kid” you saw who runs around screaming, or who can’t communicate at all, because I grew up.  And because we’re all different, because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways.  I am “not like that kid,” because, to be perfectly literal, I am not that kid.

We are as unique as the stars.  They say autism is a spectrum, but I don’t think that really describes its variety and complexity well.  It’s not a simple progression from mild to severe.  I often say it’s more like a constellation, or galaxy (which, another blogger pointed out to me today, has the added metaphorical benefit of being a 4-dimensional construct; it changes through time for every person as well).  There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists or just incredible people.

I am far more fortunate than many, and not as lucky as others.  I know this; you don’t need to rub my nose in it.

If you can’t think of me as autistic because I have so much personality…actually, we usually do.

If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.

If you can’t think of me as autistic because I’m verbal and communicative…read more about AS.  Those things are features of the condition.

If you can’t think of me as autistic because I’m so good at my job…please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), organizing, color-coding, and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior.  (Actors, I adore you all so much.)

If you think I can’t be autistic because I’m so good at multitasking, well, I’m not.  Good at multitasking, that is…I can’t do it at all.  I know I’m taking a certain risk in telling you this.  What you see when you see me do my job is the result of copious amounts of planning, mental choreography, scripting, queuing, pre-thinking, mapping out scenarios like computer flowcharts, making Excel spreadsheets, preparation and learning from experience, and excellent assistants being good at their jobs, too.  (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)

You get good at anything you do for a long time.  I got good at my life when I stopped trying to live one that I realized I could never have.

If you can’t believe I’m autistic, what on God’s green earth do you think I am?  Because I sure as hell failed at being normal.

I’m autistic.  There’s not another or a better word for what I am.  It’s one I searched long and fought hard for.

If you can’t think of me as autistic, it’s not so much for my sake that I care, but watch out that it’s not because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings.  Because if your prejudice is that autistic people can’t be these things, you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.

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