Stigma, Disorders, and Shame

“…Like many people with depression, Stacy bought into long-held public attitudes toward the condition. Her self-stigma delayed her treatment, increased her isolation, warped her self-image and lowered her self-esteem—a closed-circuit loop that only deepens depression

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Although I do not, thankfully, suffer, from chronic depression, many people I know and love do so. And yes, this article is dead-on.

Beyond the subject of chronic depression, I DO have several sensory-processing disorders: dyslexia, dyscalculia, and perhaps a touch of Asperger Syndrome as well. (I seem to have overcome most of it, but my childhood was textbook Aspie.) And although those disorders are not depression per se, they did have a massive impact upon my social and emotional state… frequent depressions included…

…especially because I had no idea those conditions existed.

But my parents knew. And they did not tell me.

I have since worked through most of the fury I felt when I discovered – in my mid-30s – that my father’s family had a history of what we would now call sensory processing disorders, and that no one had ever told me about them. Not wanting to accept the social stigma that came with such disorders (known during my childhood by the tactless but not incorrect diagnosis “minimal brain dysfunction”), or wanting me to endure it, they simply did not tell me that I had inherited those problems.

And so, I didn’t even know these conditions existed.

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Instead of teaching me that there were ways to work around those sensory-processing problems, my parents and teachers just pushed me to get past them, and/ or shamed me into doing so. “You’re just not TRYING hard enough” was the mantra of my childhood, and I admit that I still hold a grudge against my parents for using that term so often when I was growing up.

In their defense, VERY few people knew about those problems in America during the 1970s, and even fewer knew how to treat them, or cared to do so. You didn’t have “sensory-processing disorders.” You were “just retarded.” And given the choice between “You’re kid’s retarded” and “Your kid’s not trying hard enough,” it’s not hard to see why my parents did what they did.

That social stigma was compounded by my father’s position as a ranking member of the Joint Chiefs of Staff, and as a CO in the U.S. Navy. Especially in that time and position, military officers simply did not have kids with problems. Such things were not tolerated, and hence they became “unproblems.”

That shit fucked me up when I was a kid, and it had life-defining repercussions afterward.

Well into my mid-20s, I endured crushing depressions and violent anger issues. Almost everything frustrated me, and I often lashed out from that frustration, or else withdrew into solitude. As people who knew me back then can attest, I was unusually insecure even by adolescent standards until I discovered the holy trinity of heavy metal music, theatre classes, and roleplaying games between 1978-79. Those three venues (plus, a few years later, punk rock and medieval-recreation groups) gave me outlets for my passionate temperament that did not demand a reliably functioning sensory-input system. Ironically, my writing vocation (which became possible only when home-computer technology caught up with my dyslexia) helped me turn those skills and interests into a somewhat-profitable career.

Up until then, my work and life were constantly hindered by a brain that insisted on reading data incorrectly and with unreliable results… and also by the emotional turmoil of having my ability to process information constantly scattered without warning. Combined with the social stigma (“spaz,” “retard,” “you’re just not TRYING hard enough“), those factors were literally driving me un-sane.

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Imagine this: You’re reading something and then suddenly your brain stops at a word and refuses to read it. “I can’t read that,” says your brain, “It’s in French.” 

“No it’s not,” you tell your brain. “It’s in English. Read it.”

“I can’t read it. It’s in French.”

NO,” you insist, “It’s in ENGLISH. Read it.”

“But I don’t KNOW French.”

Just READ THE WORD.”

“It’s in Polish.”

“It’s not in French or Polish!” Now you’re getting pissed. “It’s an ENGLISH WORD. Read it.”

“Okay,” your brain replies, pouting. “Fine.”

“So what’s it say?”

“It’s Japanese.”

That’s what having dyslexia and/ or dyscalculia is like. All the fucking time.

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Thankfully, my now-former wife Cathi A Jones Buchanan told me about dyslexia during my 20s. I had it checked… and sure enough. there it was. With a side-order of dyscalculia, just to keep things interesting. 

I told my Dad. “No, you don’t,” he said.

“Yeah, Dad – I do.”

“But you read so well.”

I started to get mad. “Do you have ANY IDEA how hard it was for me to learn how to read? Or to spell? Or how hard it STILL IS for me to do math? All you ever did was push me. But it never stopped being hard.”

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A few years after that, I leaned from Dad’s cousin that such challenges ran in the family, on Dad’s mother’s side – so heavily so that around the neighborhood they were known as “the Crazy Castrovincis.”

Dad knew. Mom knew. And they had not told me.

I. Was. Pissed.

So many other things I could have done. So much pain I might have avoided and learned how to deal with, so many complexes and issues I might not have had if someone had just told me that it wasn’t my fault that I couldn’t process information correctly or reliably.

And while I was (and sometimes remain) angry with my parents for that, it’s not their fault that the military, the schools, and society in general would have made US wrong for a fucking hereditary medical condition.

So that’s the point of this post: It’s not a person’s fault if their brain isn’t – to use the current term – functioning in a neurotypical fashion.

It is not a moral failing when a person’s brain or body rebels against them.

It DOES NO FUCKING GOOD to shame a person for having a medical condition that scrambles their mental signals or rewires their physical circuitry.

That person is already feeling ashamed and frustrated and furious with themselves and their bodies and minds.

Adding to that shit, instead of figuring out constructive workarounds, does nothing but make the situation worse.

And in a world and an age where those conditions appear – for whatever reason – to be on the rise (or at least more obvious than they once were), it’s counterproductive to EVERYONE when we treat medical conditions like moral and social failures that will correct themselves with a few well-placed kicks in the ass.

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About Satyr

Award-winning fantasy author, game-designer, and all 'round creative malcontent. Creator of a whole bunch of stuff, most notably the series Mage: The Ascension, Deliria: Faerie Tales for a New Millennium, and Powerchords: Music, Magic & Urban Fantasy. Lives in Seattle. Hates shoes. Loves cats. Dances a lot.
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4 Responses to Stigma, Disorders, and Shame

  1. Joy says:

    This is really well said. My son fought with dysgraphia and convinced himself he was just “stupid”, despite his school and neurologist recognizing and addressing the actual problem. Eventually (thankfully with the help of very patient school staff, including providing him a laptop in elementary so that he could process thought while he was writing, previously impossible) he was able to find “work arounds” and graduated with high honors. I can’t imagine the path he would have taken if they had not recognized the need for help and discussion about it.

  2. Edward says:

    Thanks for this post.I can relate. I’m not dyslexic, but I had some of the sensory processing issues as a child. Still do, but it’s manageable. I didn’t even know what it was until I read a G.I. Joe comic some years ago where the character had the same condition(an extreme version, of course). It was my “That’s It!” moment. It just took me 40+ years to figure out.

  3. Pingback: 50 Rocks: Part One – Fire and Four Strings | Satyros Phil Brucato

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