Meetings can be important. They can be overwhelming. Meetings can help solidify relationships in the workplace. They can serve as distractions from what some of us see as the "real" job. This is about how I sometimes experience meetings at work.
Tuesday, December 22, 2009
Friday, December 18, 2009
How the Grinch Tried to Steal Autistic Self-Advocacy
Each autistic person deserved life a lot...But the Grinch, who lived outside of Reason,
Thought NOT!
The Grinch hated autism, every season
He liked to chelate cats and give dogs HBOT.
He thought all he could with his tiny green head
About how to prove they’d be better off dead
Until it occurred to him how to derail
Every self-advocate, make them all FAIL.
He talked and he talked about bad heavy metals
And fed every child only dandelion petals,
For surely the gluten contained in their snacks
Was causing the tantrums and nasty head whacks.
It wasn’t enough to define a disease
To diagnose those whose behavior displeased.
He had to make progress in shutting up those
Who saw through the lies he was sure they’d expose.
For every last one
who might dare denounce
Judge Rotenburg Center,
On each one he’d pounce.
He’d call them all liars
And Not Like My Child,
He’d scoff at their problems
And say they were “mild.”
He’d call them all ignorant, cruel and bitter,
Mock them on Facebook and flame them on Twitter.
When all were distracted defending themselves
The Grinch would be ready to work with his elves.
For each child who head banged or never did speak
He’d build a new center for shocking those freaks.
In every last schoolhouse, in every last town
He’d build rooms for locking and tying kids down.
In case the adults thought they’d be off the hook,
He’d tell all employers “Don’t bother to look”
At job seekers bringing a parrot along,
People like that have no right to belong.
But the really Big_plan that made the Grinch smile
Was much worse than HBOT, far worse than chelation,
His true goal was more than a little bit vile,
This Grinch, he was hell bent on eradication.
He'd make videos for Autism Speaks
About how the lives of autistics are bleak,
About the great burden we place on the others,
Moms, dads, aunts, uncles and sisters and brothers,
Surely the public would now buy his answer
To autism, so much more awful than cancer.
More money was needed, he hastened to warn
To keep any more of us from being born.
The only thing stopping him from the foul deed
Was that self advocates weren’t as naïve
As clueless professionals claimed in their scorn.
No longer would anyone listen or heed
The derailing tactics, they'd no longer plead
With bigots to understand they had a right
To speak up and take part in everyone’s fight.
From that moment on whenever they heard
"You’re not quite autistic,"
They just said “Absurd!”
The right to protest isn’t based on such stuff
As who can speak well or who seems like a nerd.
It’s more fundamental, this point the Grinch missed:
We’re human. We all have the right to exist.
About how to prove they’d be better off dead
Until it occurred to him how to derail
Every self-advocate, make them all FAIL.
He talked and he talked about bad heavy metals
And fed every child only dandelion petals,
For surely the gluten contained in their snacks
Was causing the tantrums and nasty head whacks.
It wasn’t enough to define a disease
To diagnose those whose behavior displeased.
He had to make progress in shutting up those
Who saw through the lies he was sure they’d expose.
For every last one
who might dare denounce
Judge Rotenburg Center,
On each one he’d pounce.
He’d call them all liars
And Not Like My Child,
He’d scoff at their problems
And say they were “mild.”
He’d call them all ignorant, cruel and bitter,
Mock them on Facebook and flame them on Twitter.
When all were distracted defending themselves
The Grinch would be ready to work with his elves.
For each child who head banged or never did speak
He’d build a new center for shocking those freaks.
In every last schoolhouse, in every last town
He’d build rooms for locking and tying kids down.
In case the adults thought they’d be off the hook,
He’d tell all employers “Don’t bother to look”
At job seekers bringing a parrot along,
People like that have no right to belong.
But the really Big_plan that made the Grinch smile
Was much worse than HBOT, far worse than chelation,
His true goal was more than a little bit vile,
This Grinch, he was hell bent on eradication.
He'd make videos for Autism Speaks
About how the lives of autistics are bleak,
About the great burden we place on the others,
Moms, dads, aunts, uncles and sisters and brothers,
Surely the public would now buy his answer
To autism, so much more awful than cancer.
More money was needed, he hastened to warn
To keep any more of us from being born.
The only thing stopping him from the foul deed
Was that self advocates weren’t as naïve
As clueless professionals claimed in their scorn.
No longer would anyone listen or heed
The derailing tactics, they'd no longer plead
With bigots to understand they had a right
To speak up and take part in everyone’s fight.
From that moment on whenever they heard
"You’re not quite autistic,"
They just said “Absurd!”
The right to protest isn’t based on such stuff
As who can speak well or who seems like a nerd.
It’s more fundamental, this point the Grinch missed:
We’re human. We all have the right to exist.
Thursday, December 17, 2009
Tuesday, December 15, 2009
Siblings of Neurotypicality Suffer the Most: A Holiday Letter from Squawkers McCaw
Hello. I’m Squawkers McCaw, and I am a Sibling of Neurotypicality. While my brother Durwood is the one officially labeled with the disorder, I am here to tell you that the entire family is affected. The impact is especially evident this time of year. Like many NTs, Durwood shows signs of regression and acting out around the holidays. These are technical terms, and I’ll leave it to you to look them up. Let me explain what I’m squawking about… To most normal birds like me, every day is about the same. Sure, I get a little excited when I think about getting the trench coat I asked Santa to bring me, but that just means that I repeat the words “trench coat” quietly to myself while rocking back and forth. Durwood, on the other hand, has issued a long list of demands, and while he believes in the superstition that being extra “good” will increase his chances of receiving piles of toys, electronic gadgets and gift cards, his ability to be good decreases with each day as the 25th of December draws nearer.
Last night, Durwood went to a Christmas party while I stayed home and read a book about British soldiers in World War I, who were the first to wear trench coats. I was so relieved that I didn’t have to go the party, but I felt bad for my brother. When he came home, he had new toys with him (they all make noise!) and a new list of things he says he will need because, “everyone has them.” It seems that the $100 LookSilly slate blue sneakers he had to have just last month are now “bogus” and will need to be replaced by the new LookSillier version in cobalt. He also reported that last year’s eight wheeled skateboard is now “so not cool” and that he will require the Older But Newer brand Beaky Lasek model. He acted like he was on something (probably sugar), nearly foaming at the mouth as he recalled every detail of the party, including haberdashery habits, courtship behaviors, and the forms of music related movement rituals performed.
It is because of Durwood that bells are hanging everywhere. Every time someone opens the door, I startle; it can take quite awhile to get back to work on my research. Humphrey Bogart wore a trench coat in Casablanca. Also, there is a tree inside our house! It smells…well, like something that should be outdoors. When I step on a pine needle in the middle of my own living room, it feels like I’m being stabbed with a knife. These things don’t bother Durwood; he has sensory deficiencies. To make room for the tree, the humans here moved the sofa 8 inches closer to the door and rotated it 22.5 degrees. It is hard to be comfortable in a place where such meaningless novelties are tolerated.
Worst of all, a neighbor brought by something called a fruitcake last week. I was told I had to try a piece to “be polite” but I don’t think the neighbor was impressed with my manners when I gagged and then regurgitated on her new coat. It was not a trench coat, but I still had to go to my cage for the rest of the night. Durwood got away with wadding his piece up in a ball and throwing it at the wall. It was so playful, so “just like a neurotypical kid” they said. Sometimes I do resent the special accommodations he gets. Just sayin’.
As you can see, these behaviors take a toll not only on parents who must bear the burden of additional expenses, but on normal siblings like me who need peace and quiet to study the advantages of single versus double breasted trench coats. As far as other gifts, please don’t bother. I like the things I’ve always had. They comfort me. This is the end of the holiday letter.
Squawk,
S. McCaw
Sunday, December 13, 2009
Notes on a holiday party
One must make an appearance. This is the holiday party, an open house, with visitors to the office, with foods you would never make at home, broccoli casserole, sausage balls, apple stack cake, standard holiday fare in this part of the country. Accidentally, I’ve blocked myself in. I will have to ask the man next to me to let me out. People are chewing in the noisy way people do, and talking about…well, I never know. A favorite childhood memory, one is asking a man who grew up in another country. This sounds like an interview but there is a subtext. I know this because she told me so. The others at the table are saying something about sports, then politics, then television, then Christmas decorations. I can’t keep up. How many minutes? I eat the small sandwich, and wrap up another one for later. No one is talking about work. I don’t know how…
Except that sometimes I do, its own kind of problem.
Sometimes I fit in (almost). Confusion ensues.
The room is swarming with syllables. It sounds like
I’ve never known broccoli. Not in the noisy way. Ask the one there, interviewing the table. Who grew? Tell me the other casserole subtext. The sandwiched minutes, then memory, then television, all stacked. Someone visited Keep, or planned to prefer decorations in the small sportsway. Another standard, accidentally blocked. But you would never know how many. She told, all open apperance. Next, at home, as in another country, childhood, work.
The stories sounds make in the room are about something like a parallel party. It exists, I promise you. Imagination and real life are not separate things. For several weeks I have thought about the meaning of things. Of college. I meant to say years. There is a way of talking, a way of writing, another standard. There is a way of blocking the others, and not accidentally, which makes succeeding its own kind of problem. The reasons for being on one side or the other often have more to do with privilege than character or intention. I meant to say university. What types of responsibility are implied?
This is called “living in your head” or “being in your own world.” But the door is open, at least sometimes. You read too much. There are thinkers and doers. That’s what she said. Participation was thought to consist of playing, which was defined by someone else, and in the adult world participation means working when it is time to work, and not at the other times, and there are rules about this which constantly shift and no announcement is made.
On “play,” the shapes and colors fall into patterns of threes, disappearing in bursts and electrified lines. A game played alone, but also with others, at great distances. Who is excluded? Anyone who lacks a computer and/or internet access. A broadband connection is also necessary for speed, for getting the best scores. Anyone without sufficient hand-eye coordination to make the game worthwhile. Anyone without at least one fully operational (standard) hand or assistive equipment to compensate. Primarily, the poor and the disabled. Surely there are others I haven’t thought of too. This is the nature of privilege, taking some work to see it.
Academic writing is another kind of game. There are rules that must be observed, there are scores. To play, one requires access to an extensive library online or otherwise. Access is granted with employment by or enrollment in an institution of higher education, or with a large sum of money, or with physical location near a good library and considerable time to spend there. In any case, time is needed, free from activities required for survival. The basic needs for food and shelter must be met. It is easy to see how frivolous or impossible, how absurd it might all look without these conditions fulfilled.
One is saying a lake in Tennessee. One is recalling a holiday play about fighting. Two are debating the merits of reality television. I have a thought or two on these. The time to say it has passed. Lately, my favorite shows are about competition between chefs and people who can’t throw anything away. There is a fictional show I should mention, but that could come later.
Now it is time, and he understands the caged look, letting me go.
How many minutes? Five. Something like five.
Apple cake. What was that person thinking, eating, not talking, then saying two words, apparently at the wrong time, drawing a curious stare in response, standing in the middle of things, walking in circles, leaving, gone? This is the question I’ve answered that nobody asked.
Back in my office, I work on a proposal until I am calm and focused. I build a case based on exclusion and the right to participate. After awhile, I return with Squawkers McCaw. We visit each table, he wishes coworkers and guests a good season. Most everyone here knows him well. It is an excellent workplace and I am happy here most of the time. Fully included. I signify this with a series of chirps and trills. Several people chirp back.
Seven, I think. That makes the goal for the next one eight.
Except that sometimes I do, its own kind of problem.
Sometimes I fit in (almost). Confusion ensues.
The room is swarming with syllables. It sounds like
I’ve never known broccoli. Not in the noisy way. Ask the one there, interviewing the table. Who grew? Tell me the other casserole subtext. The sandwiched minutes, then memory, then television, all stacked. Someone visited Keep, or planned to prefer decorations in the small sportsway. Another standard, accidentally blocked. But you would never know how many. She told, all open apperance. Next, at home, as in another country, childhood, work.
The stories sounds make in the room are about something like a parallel party. It exists, I promise you. Imagination and real life are not separate things. For several weeks I have thought about the meaning of things. Of college. I meant to say years. There is a way of talking, a way of writing, another standard. There is a way of blocking the others, and not accidentally, which makes succeeding its own kind of problem. The reasons for being on one side or the other often have more to do with privilege than character or intention. I meant to say university. What types of responsibility are implied?
This is called “living in your head” or “being in your own world.” But the door is open, at least sometimes. You read too much. There are thinkers and doers. That’s what she said. Participation was thought to consist of playing, which was defined by someone else, and in the adult world participation means working when it is time to work, and not at the other times, and there are rules about this which constantly shift and no announcement is made.
On “play,” the shapes and colors fall into patterns of threes, disappearing in bursts and electrified lines. A game played alone, but also with others, at great distances. Who is excluded? Anyone who lacks a computer and/or internet access. A broadband connection is also necessary for speed, for getting the best scores. Anyone without sufficient hand-eye coordination to make the game worthwhile. Anyone without at least one fully operational (standard) hand or assistive equipment to compensate. Primarily, the poor and the disabled. Surely there are others I haven’t thought of too. This is the nature of privilege, taking some work to see it.
Academic writing is another kind of game. There are rules that must be observed, there are scores. To play, one requires access to an extensive library online or otherwise. Access is granted with employment by or enrollment in an institution of higher education, or with a large sum of money, or with physical location near a good library and considerable time to spend there. In any case, time is needed, free from activities required for survival. The basic needs for food and shelter must be met. It is easy to see how frivolous or impossible, how absurd it might all look without these conditions fulfilled.
One is saying a lake in Tennessee. One is recalling a holiday play about fighting. Two are debating the merits of reality television. I have a thought or two on these. The time to say it has passed. Lately, my favorite shows are about competition between chefs and people who can’t throw anything away. There is a fictional show I should mention, but that could come later.
Now it is time, and he understands the caged look, letting me go.
How many minutes? Five. Something like five.
Apple cake. What was that person thinking, eating, not talking, then saying two words, apparently at the wrong time, drawing a curious stare in response, standing in the middle of things, walking in circles, leaving, gone? This is the question I’ve answered that nobody asked.
Back in my office, I work on a proposal until I am calm and focused. I build a case based on exclusion and the right to participate. After awhile, I return with Squawkers McCaw. We visit each table, he wishes coworkers and guests a good season. Most everyone here knows him well. It is an excellent workplace and I am happy here most of the time. Fully included. I signify this with a series of chirps and trills. Several people chirp back.
Seven, I think. That makes the goal for the next one eight.
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