Living with the Disabled

60-sesamestreet-1273156-640x360My topic today, Autism. Much has been written recently about every aspect of a worldwide, complex, human and eternal issue: People with Disabilities. Inclusion. Tolerance and Acceptance… etc etc. But I’ve seen far less written about the trials and stresses of being a normal, well-adjusted, neuro-typical, decent-hearted human being stuck with living with the disabled.

I’m one of them. My life is consumed by having to live in a family full of defective, dysfunctional humans. Every hour. Every day. Let me give you some examples:

They cannot stack plates properly. Plates in my house are just put on top of the existing stack. My family are so disabled, they cannot look at the stack and put like-with-like; largest on the bottom, smallest on the top. It’s very distressing.

The bowls, too. I mean, how could anyone be so defective? But they are.

Another one is this: they cannot arrange things on the kitchen bench or on the stovetop. Nothing is aligned. The handles are pointing every which way. Seriously, it is as if they have completed failed to be born with any of the normal sense receptors. And don’t get me started on their total inability to arrange things waiting to be washed. It seems to be the place where all their dysfunctions cluster together as one.

But the absolute worst, and the thing that is so difficult to tolerate (it is like a physical pain to me), is inside the dishwasher. My family are so disabled they cannot perceive the natural order within, all perfected down through the ages by expert German engineers.

To a neuro-typical person such as myself, with normal fully-functional perceptions, it is so obvious where the soup bowls need to go; the flatware, the cups as distinct from mugs, and so on. Everything has a place; it can ‘nest’. And those other obvious things: like tall items being placed to the back or sides to prevent impacts and chipping. Nothing should be placed so that it can wobble. Upside down mugs must always be on a tilt. and so on.

Nope; it just gets flung in there, higgledy-piggledy. It is torment! But I endure it. I suffer, because the disabled must be accepted for their tragic limitations. We must not judge. We must practice kindness, tolerance & patience. Even when we want to scream.

I know, I know. A lot of solid scientific studies are now being done, thank goodness. We understand them so much better than the dark days behind us. For example, their tendency to frame their constant fears and anxieties, and that perplexing tendency to double-guess everyone around them with suspicion, seeking for mysterious signals and undercurrents that are so often not even there, as ‘Social Skills.’

Sad and so unproductive, but we must endure the defective. It’s a great world we live in.

Well, enough with the sarcasm, but I’m making a point. I hope you’ve already figured it out. WHO IS TO JUDGE? WHO MAY CLAIM THE MORAL HIGH GROUND? WHAT SORT OF OUT-AND-OUT ARROGANCE is it to declare yourself ‘normal’ and then proceed to define others as defective? WHO DOES THESE STUDIES? WHO MAKES THESE DECLARATIONS?

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There’s a nasty whiff of the Patriarchy about this. A hint of the evil crap generated and disseminated by arrogant aristocrat gentlemen-scientists of a few hundred years back, declaring Africans as sub-human, for example, or women as incapable of reason.

To me, and I’m out-and-out serious here, the rest of my family are defective. They have a disability. If I were one of those arrogant aristocrat/scientists of yor observing my wife and sons in the kitchen, I could use my power and influence to simple declare their condition to be a real thing. I’d write scientific papers on it. It would get into the DSM. And a lot of people would grab it and use it to bolster their own egos and sense of safety (‘normalcy’) in the bigger tribe. [I live with someone who does exactly that to me. It’s not nice.]

Even when studies are done, there is a recurring blind-spot. Those that believe themselves to be ‘un-defective’ are going to fall prey to their own Confirmation Bias. Results will inevitably be interpreted to bolster the idea that Autism is a defect.

Take this example from an otherwise very interesting and table-turning report:

“So, why do so many people see a lack of empathy as a defining characteristic of autism spectrum disorder? The problem starts with the complexity of empathy itself. One aspect is simply the ability to see the world from the perspective of another. Another is more emotional – the ability to imagine what the other is feeling and care about their pain as a result. Autistic children tend to develop the first part of empathy – which is called “theory of mind” – later than other kids.

This was established in a classic experiment [my emphasis] Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?

Most 4-year-olds know Sally didn’t see Anne move the marble, so they get it right. By 10 or 11, children with developmental disabilities who have verbal IQs equivalent to 3-year-olds also get it right. But 80 per cent ofautistic children age 10 to 11 guess that Sally will look in the box, because they know that’s where the marble is and they don’t realize other people don’t share all of their knowledge.”

There it is. seems solid enough. Statistics; analysis; conclusion. BUT: the bias is built in. The experimenters were already looking for some sort of ‘fault’ in the ‘autistic’ children, so they interpret the children’s expectations as evidence of the expected fault.

Marbles1But there is another way of interpreting the results: Some of the children (defined here as ‘autistic’ and therefore already faulty) were actually well ahead of the game. Having  superior abilities compared to the rest of the plonkers, even at that age, they saw it for what it was: a puppet show. They figured out that behind the puppets was a single puppeteer who knew exactly where the marble was – because she was the one who moved it to the box.  So when she came back as Sally, she was still the puppeteer and would look in the box.

Hell. Obvious. But the observing adult experts had grossly underestimated the ability of that sub-set of children. As the main article posits: autistic children are hyper-perceptive

Thus everyone who comes along thereafter, the bright-eyed 19yo psych students, have their ability to reinterpret the experiment re-shaped and glued down by their teaching masters – all convinced of their neuro-typical exceptionalism. I wonder how many of them put up their hand during the lecture and said, “Wait a minute…”?

And if they did, their seniors would smoothly wriggle around the protest, I’m sure. Been in lectures, I have. The Patriarchy writ large.

Anyway, I’ll leave you there. Have to go and do the dishes. <SHUDDERS>

 

 

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The Day I started School

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Excited, I followed Mother the day I turned 5 and sat in a huge classroom with about 1,000 other noisy little humans, and promptly spaced out. A successful day involved eating my lunch and getting home without being accosted by either friend or foe.

Autism: It’s a sort of invisible stretchy membrane that prevents a lot of stuff getting transmitted either way.

They kept me in that class for two years; told my mother I was intellectually impaired. But enough teachers spied the genius lurking behind the bushes. Those genius teachers found ways to draw out what was there (I was an art prodigy) and gradually my wheels engaged (never perfectly, for mine spun too fast for whatever track they put me on). I finished high school Dux in Math & Science. … [Fast-forward for 35 years]

My son seemed hopeless. At 3, 4 and 5, teaching him to read became a battle that he always won (and I lost, so I just resumed reading him high-school text books) and he was finally assessed as being severely dyslexic (*and* with dysgraphia). “He’ll probably never read for pleasure,”said the assessor, “He may never read at all.”

boy-struggling-readingBut my son stood listening to the expert that day, just out of our sight, and the next day he was gazing determinedly into a book. Within a month he was reading Harry Potter. Max crossed some ten years of education in the space of five weeks.

Take heart. We all travel at different speeds *and* wavelengths, but sadly, Education still manages to transmit on only one.

Having ‘Smarts’ sure helps — it can bridge a lot of gaps given time — and so does determination, or even better: a Sense of Direction; a Calling. I know this because I never had either and spent my life in a ship with a lot of sails but no chart, no compass, and a captain too prone to the cry of sirens. In the end, however (and to my surprise), I became a successful writer.

[EXPLANATION: – this short piece was written in response to an article on Medium. The article is right here: https://medium.com/synapse/too-dumb-to-be-a-doctor-2aa51d577e8b#.3kxnm4v26

Medium seems to be a place with some really high-end writers from many fields (at least they’re the ones that get their stuff featured every day).

Medium is right here: https://medium.com/