I learned a new word a while back.
"Neurodivergent."
No one had ever called me that before. I've been called plenty of things as a kid, growing up - by parents, school teachers, counsellors, nurses coaches, and principals, other kids, child development "professionals"... The list goes on.
Lazy, crazy, twitchy, spazz, stupid, moron, idiot, wilfully disobedient, bad seed, inappropriate, unruly, disrespectful, doesn't listen, doesn't pay attention, chatterbox, Chatty Cathy, rude, no respect for authority, never shuts up, defiant, disturbed, damaged, failure to socialise properly, outcast, abnormal, makes "idiot noises", liar... That list goes on too.
I fidgeted all the time. I interrupted. I couldn't moderate my volume, sit still, stay calm, or seem to pay attention when I was supposed to. I made funny noises and randomly shook my head like I was saying, "no". And the more I got in trouble for doing it, the less I could stop it happening. Usually when an adult was scolding me, then scolding me some more for shaking my head, "no" at them, and then upping the ante when I was "obviously lying" by denying that I was telling them no. And "refusing" to stop doing all those bad things, no matter how many times I was told, how dire the threats of consequences were, or how often or severely I was punished. I just would not stop. They couldn't scold, reason, cajole, bribe, or beat it out of me. Clearly, I was just a bad kid who refused to learn her lesson, and so defiant that the more I got in trouble, the worse I "acted out". A lost cause. "So much potential, cause she is SO smart, but..."
Then, decades later, new terms and some alphabet soup;
"Chronic Motor Tic", "ADS", "ADHD (Combined, severe)", "dyslexia", "OCP/D"...
"Disability", "Illness", "Syndrome"...
"Disorder".
It turns out I wasn't "acting out" all those years after all. All that time, I was telling the truth! Who knew? (I did! But who can trust a child to tell the truth? Especially a bad child who refuses to mind.)
With each new label, a new understanding of what is wrong with me. Reasons why I am broken, and how it might be worked around. Not fixed, because these defects have no cures - only crutches to help us get by in the world better. As less of a detriment to society. To fit in better. Appear more "normal".
These, at least, were better than the old labels. Not ideal, but better, at least, than having no idea why it seemed like I could never do things right. Why the harder I tried, the more I failed, and the more I just pissed people off and got in trouble. At least, here were reasons for my failures. Why I am the way I am. Why I'm such a fuckup.
And don't get me wrong. The tools I've discovered for coping with my diagnoses have been invaluable! Just having words to frame it so people understand that certain things are just not in my control in the same ways they might be for others has been an immense relief. So has being able to talk with others like me, who share common communication styles and totally understand my "glitches".
But I kept thinking, and saying, to anyone who would listen, that maybe we're not really defective. Maybe we're just different models, but most people are reading the manual for the standard, stock model, and therefore assuming the deviations are malfunctions. What if the manual just needs to be updated and expanded to include the variations?
And then I learned this other new word...
It turns out I'm not the only one who thought of expanding the manual, as it were. And the idea - or at least the public sharing of it, is actually more than twenty years old!! A social Scientist named Judy Singer coined the term, "Neurodiversity", way back in 1996! Then she wrote an entire book about it in 2017.
So, why?
Why am I just now hearing about any of this halfway through 2021? Why have most people never even heard of the concept?
And why, when the scientific community now knows that 12.5% of the population (and some research puts the number closer to 20-30%) are some form of "neurodivergent", is it even considered that "divergent" at all?
To put that in perspective, redheads comprise about 1-2% of the population.
That's at least six times more anomalous than "neurodivergent" people. Yet we don't regard that as a disorder. We simply understand that red haired people are probably more prone to sunburn, tend to have freckles, and don't wear certain colours so well.
It's common knowledge. No one (except Eric Cartman) is trying to find cures for "ginger disease", and no official requests for reasonable accommodation are required. It's just part of normal.
So why can't I just be part of normal?
This one works with children who have one of the alphabet soups diagnoses. When she's interviewing, she insists on parents coming to understand several things.
ReplyDelete1. They need to parent the child they have, not the child they want. They might not know how yet, and she's happy to facilitate in any way she can, but they have to be willing to meet their child where the child is before ever expecting the child to change to meet their expectations.
2. They need to be willing to research. Talk to experts in the field. Read, read and read some more. Talk to adults with whatever the diagnosis is, and ask what advice they have. Join a discussion/support group. Most important: chart and track their child's discussion, actions and reactions. After all, the only research that really will count long term is the research specific to their child.
3. They need to understand that there are positives, neutrals and negatives in every situation. This girl's biggest job is teaching the child what society expects and then helping them to understand how to use the positives that come with their "problems" to succeed more than someone without their diagnosis.
How we accomplish that is different for every family (and school, town, etc). she's just sorry that You struggled and had so many people who failed to realize that You are an amazing person, Mistress.
It sounds like you're great at what you do, elsa! I'm very grateful that today's kids get to grow up in a world where these things are more out in the open, known about, and addressed.
ReplyDeleteIn Tennessee (and everywhere, really) in the 1970s-80s, things were different.