• author
    • Maya Stiles Parsons Spier

      Columnist, Editor-in-Chief
    • January 6, 2013 in Columnists

    Not disabled… not disordered… not broken

    “Be kind, for everyone you meet is fighting a great battle.”
    –Tim Page

    Experts have always been enamored of diagnoses.   After all, if they can force us into a box of their own defining, then they can safely make sense of us.  In fact, an expert told me I was a sociopath—scared me to death once I figured out what that meant.   From Dictionary.com:

    [soh-see-uh-path, soh-shee-] Show IPA
    noun, Psychiatry.
    a person with a psychopathic personality whose behavior is antisocial, often criminal, and who lacks a sense of moral responsibility or social conscience.

    Um, no.  Not me.  I am burdened with so much sense of moral responsibility and social conscience that I can hardly walk upright under the burden.  I drive people crazy with it.  And I don’t just do it to prove I’m not a sociopath, either. Really.

    It worried the tar out of me for years.  Such a defect to have.  According to this expert, I was a monster, deficient in all ways that mattered for being a good human being — or at least somebody had thought so and had been willing to write it down in all sorts of charts and records all over the place.

    It wasn’t as if I didn’t already feel defective enough already.

    Everywhere I go these days, I see people defined.  There’s a name for everything.  Oppositional-defiant disorder for a kid who demands his intelligence be respected rather than mindlessly follow orders.  Attention Deficit Hyperactivity Disorder for a high-energy kid who needs to run around every hour or so before she sits down and focuses.  Asperger’s.  Autism.  Obsessive Compulsive Disorder.  I could take up my entire word count listing all the things we’re all diagnosed with, often when we are children.

    Back when I was parenting littles, we didn’t have so many words for kids.  Some kids were easy.  Some were a little more complicated.  Some were shy (now that’s a diagnosis, too).  Some were brassy and confident.  Some raced about like little hooligans.  Some stared dreamily off into space.  Some were just magnificently weird.  They were kids, they were varied.  They were normal.  We parents flexed to take care of the marvelous little individuals we had been blessed with, because that’s just what parents did.   Now these same kids and their parents are bandying about their diagnoses as if that was the grand sum total of who they are.

    I’ve noticed something else.  You have to pay close attention because the tell is fleeting.  It’s in the eyes.  It’s a wincing, a pain, quickly hidden.  It’s shame.  I saw it and I kept seeing it in every kid who had been separated from the herd of so-called normal little kids by the magical diagnosis.

    Every one of us here on iPinion knows this to be true:  Words are powerful.  Words create realities.  Words can build or destroy lives, can build or destroy cultures and civilizations.  Just consider the world in which I grew up where the “N” word was bandied about casually, as if there needed be no excuse to spew it.  The consequence of a world where this word was casual conversation was oppression and violence.  Words create us all.

    So imagine being a little kids who know they now have the word “disorder” and “disability” attached to them.  Little kids are smart and they cannot be fooled.  They know perfectly well what people are saying about them and exactly what that means.  What that means is that these little kids are broken.  It’s hard enough just being a kid.  Now try being a broken kid and try to make it to adulthood more or less in one piece.

    The hell, I say.  No, they’re not.  They are not dis-abled.  They are quite able.  Their ableness may vary from other people’s, but they can do all sorts of things.  Just watch them!  They are not dis-ordered.  They may have an order of their very own, but it’s an order, and it works for them.  But most of all They Are Not Broken.

    Let’s come up with a new term.  Instead of all this language that convinces kids — and even grownups — that they have a fatal flaw, a glaring defect (and those are so hard to overcome), how about we say that they “have work to do.”  And of course they do.  We all have work to do.  It’s just that some of us actually know what that work is and by and large, these children and grownups are doing it, and quite well, thank you.  It’s those who have no clue what their work is  who have the harder road because they need to figure out what that work is before they can get started.

    Now who are the lucky ones?

    (This is dedicated to the young woman who inspired me to say those words to her so long ago, and who has made me — and herself — so very, very proud, and to my granddaughter, who is one of the three great loves of my life.)

    • Maya, so sorry you were labeled with such a fierce word that should be used only for the ones that are convicted of crimes because of their sociopathic personalities (and there are really some doozers). When I was growing up for sure today I would have been labeled ADD but then I was called a busy beaver and loquacious and a real achiever. I loved those labels as that it what I was but it was thought of, just as your said, being an active child.normal And I was not bothered by it one bit because it was who I was and who I am today. It worked for me.

      • My daughter thinks I have ADHD with the H mostly being mental and that sounds about right. I would add in a little OCD and then a good dollop of PTSD. I need fidgets to keep from bouncing all over, but I can sit still when I have something to do with my hands. Unfortunately, such was my upbringing, but all that made me despised by most–family and teachers just thought I was a rotten, inattentive, rude little miscreant. I survived because I blessed well knew that's not how you treat a kid. Most kids are actually trying, whether they meet adult standards or not. Now I see them all as blessings, despite the challenges they present. Much of the best of me is because of my 'alphabet soup.' 🙂

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