April 4, 2014

I do not accept Autism Speaks

Since April is Autism Acceptance Month, I’d like to share a few items about myself, about the Autistic community—and about the community’s trouble with Autism Speaks, the largest autism-related nonprofit organization.

Autism Speaks has an image to maintain as the voice of autism, so they don’t want anyone talking about autism without giving them a piece of the action. It’s no use to them if a bunch of upstart autistics reject their “Autism Awareness” PR campaign and counter it with a grassroots Autism Acceptance movement. So Autism Speaks is trying to hijack the idea with their own “Autism Acceptance” page, right on their website.


I’m not linking to their page. I won’t give them the traffic or the search relevance.

As of this writing, that page is the number one Google result for autism acceptance. But there are other websites with far more relevant information (e.g., the Autism Acceptance page itself), so it doesn’t make sense that it should come up as the most relevant result in a search—and it wasn’t #1 a few days ago—so I suspect Autism Speaks has been working with SEO professionals, artificially jacking up the Google ranking. They’ve certainly got the money to spend on that kind of publicity-jiggering.

The page itself contains 10 links to other pages within the Autism Speaks website. It begins:

We know that autism acceptance is something many in the autism community are also advocating for. Here are a list of links from our website that discuss issues related to autism acceptance.

Note: That’s “the autism community,” not the Autistic community. Autism Speaks refuses to recognize an Autistic community.

Autism Speaks, at its core, refuses to recognize autistic people. Their website never uses the word “autistic.” Never! It literally is not in their vocabulary. (If you can find it in any of their materials, let me know.) On the entire “Autism Acceptance” page, here are all the phrases that refer to autistic people:

Mother with Two Sons on the Autism Spectrum
one of her sons, Rubin, who is on the autism spectrum
her son Max who has autism
Youth with Autism
young adults with autism
individuals affected by autism
individuals with autism spectrum disorder (ASD)
children with autism
students with an autism spectrum disorder (ASD)
children with autism…children with autism [twice in same paragraph]

The unwavering message of Autism Speaks is that there is no such thing as an autistic person—that there are only normal children who have been diseased with autism. They reject the fact that autism is an integral part of autistic people’s existence, that autistic people are autistic.

November 16, 2013

What lies beneath

Unless you’ve been a maintenance engineer for some kind of complex system that’s been running for a sustained period—whether it’s mechanical, electrical, or, in my case, software—you probably don’t truly understand just how tenuously pretty much every such system on the planet is held together. And, for the sake of your happiness and your basic ability to sleep at night, you don’t want to understand. Our civilization has brought us a great many things that look solid and polished and reliable on the surface. For your own sanity, don’t open them up and look inside. Just don’t.

September 12, 2012

I remember

I remember
the phone call
my mother in an airport in New Orleans
Turn on the news
Airplanes have flown into the Twin Towers

and thinking: Airplanes?
More than one?
and knowing
it was no accident

I remember
thinking
I hope they put those fires out soon
it just keeps burning

I remember
Peter Jennings
his voice cracking, once,
as he said he’d called his children while the camera wasn’t on him
and you should, too

I remember
the crystal autumn sky
the black smear along the horizon
that used to be
the World Trade Center

I remember
the empty sky
the silent empty sky
I never saw or heard before
and never saw or heard again

I remember
no commercials
no shows
only people
talking
trying to understand

I remember
Is your family OK?
Is your company OK?
Is everyone you know OK?
Are you OK?
OK
OK

I remember
the fragility
the stripped-naked truth that
it could have been any of us
it could have been all of us
it was all of us
we were all attacked
we were all the target
we all stood in the crosshairs together
so
what did our differences matter anymore?
How could we not be
one people
forevermore?
With such
unity
identity
empathy
how could we not become a better world?

I remember
the moral imperative of a five-year-old
when we wrote a card to the local Islamic Society
with a message of peace and support
and our son asked to write his own
and he wrote

We should all hold hands because our hearts are full of love.

August 3, 2012

Hello, Saudi Arabia

Yesterday, if I’d realized that my Twitter account would gain 2,000 followers from Saudi Arabia in the span of 24 hours, I’d have written a nice blog post for you to come here and read—maybe spruced up the graphics for Retina displays and such.

I hate to disappoint an audience—particularly an audience larger than I’ve ever had in my life—so I’ll write something worthwhile. Might take a few days before I really have the time. Meanwhile, I’ll still be on Twitter.

This is pretty amazing and fun.

July 20, 2012

Apparently, the letter is “u”

Subject: Hello! Can I ask you to read the letter?

I saw you during tour through resource and got my mouth water?

Wow, I didn’t think anyone saw me on my tour through resource. No, I didn’t get your mouth water. Did you send it to my office?

Yeah, it is absolutely truth that I felt in love with u from the first look.

Are you synesthetic? I know someone who attributes personalities to numbers, too.

Usually I am not writing or calling males first but some stuff happened to me when I saw u.

Sounds like some intense synesthesia. I’m jealous!

Oh, my name is Kristie.

Oh!

Tell me about u.

I can tell you’re an enthusiast, but I’m really more fond of v. It’s more versatile. Which starts with v! See?

What’s about your free time?

I spend more of it parsing ambiguously-constructed sentences than you might expect.

What do you like?

Cake!

Which food do you prefer?

I must have missed the options. I confess I was totally absorbed in resource. So sorry.

But wait—I just answered that a moment ago, didn’t I! Ha!

Would you write me next day?;)

If what? :/

I gonna be available at 9 pm tomorrow. Looking forward about our conversation!

I…guess you are!

Okay!

April 3, 2012

How it begins

In observance of Autism Acceptance Month: an excerpt from my first journal entry, Sunday, January 26, 1986. Age 17.

I do not find this writing easy. It is difficult for me to translate the thoughts, the many thoughts that are all at the same time pushing at the door in my mind to get through first to be written, in time to capture them all accurately, coherently, and with the same train. It really is difficult.

Often I have wondered at the kids in my English classes who churn out essay after essay, often with consistent A grades, seemingly without effort, while I find it hard to even begin to think coherently about the topics. I wonder if they have something I’m missing. I think maybe they are more advanced than I. Certainly, I am academically not competent—after all, my grades are low, and recently dropped quite a bit. I am ranked 36 in a class of 120.

I also seem to be lacking something the others have in home life. I mean, I never hear anyone else complaining about how their fathers yell at them with a passion when they don’t do what they’re expected—because, it would seem, they do as they’re told! Is there something wrong with me? Apparently.

But then I have my SAT scores of 690 verbal and 750 math, 1440 total, which are phenomenal in comparison with everyone else’s scores. Nearly everyone else’s, that is. There are always the exceptions [...]

Am I an idiot savant? That’s a pretty ludicrous idea. I am very talented. I act (although, since I got into high school, I haven’t had a lead role at all—quite a shock after having the lead in every production in elementary school and the junior high), I do graphic work (which, for the yearbook, was twisted—an interesting case: I brought my design for the divider pages into class and showed it to Mrs. Comarato, who liked it but had a distinct air of disappointment, saying that it took away from the job of the Art and Layout editors), and I write (as I am doing now) fairly well, so I and others think.

For years the big phrase the schools have used to describe me has been “doesn’t live up to his potential.” Personally, I’m sick of that. It’s become a cliché, a kind of “we don’t really know what’s wrong, so we’ll just say this” catchphrase. I’ve found, however, that the schools haven’t been living up to their potential. That’s another story.

I lost my train of thought there, unfortunately. As I said, that happens when I don’t get the thoughts out fast enough.

[...]

Just read the part about school and found my train of thought again, ie:

…but they can’t be more advanced than I! Honestly, I am the highest-level thinker I know. I think all the time! I have an immense mind with immense capacity for thought, reflection, and innovation. I really don’t think I’m being narcissistic. I know myself, and I am very intelligent. It seems strange to accuse the world of interpreting me wrongly, but that would seem to be the case.

August 29, 2011

Why Mickey Mouse should keep his mouth shut

For over a year, Walt Disney Imagineering has been testing a new technology in the Disney parks: costumed characters, like Mickey Mouse, with a spoken voice and a moving mouth. Until this new development, these characters have been performed silently, with all of their expression accomplished in gesture. I recommend you watch a couple of guests’ home-movie clips of the new Mickey (short clip, shorter clip) to see what I’m talking about.

Something about this strikes me as deeply wrong, but I haven’t been able to articulate my discomfort.

During my family trip to Walt Disney World in late 2010, I had the great fortune to meet Zach, a Disney College Program Cast Member. He was working behind the counter at Cosmic Ray’s Starlight Café in Tomorrowland during that semester, but he was granted an extension for Spring 2011 and became a character performer. Zach has formidable experience in stagecraft, and he addresses the issue of these talking characters in a recent post on his blog:

Guests go into a character meet-and-greet knowing what they want to say, and get their answers from the characters by interpreting their gestures and “animation.” But what’s so great about those gestures is that they can be interpreted however the Guests want them to be interpreted. Why take away that power from the Guests and their imaginations?

Zach explains his perspective in detail, also noting that since park visitors come from around the world, the voiced characters may not be able to speak their language.

In the midst of this, Zach tells a story that illustrates the power of quiet attention:

During my four months as a character performer, I had a lot of truly great Guest interactions. One day working at Animal Kingdom, Goofy was at Camp Minnie-Mickey and was met by a teary-eyed mother. The mother explained to Goofy that her father had been taken to the hospital from the Park, but he was going to be okay and just needed to recover in the hospital. He wanted her and her son, his grandson, to enjoy the rest of their day in the Park instead of the hospital. But he had one request: that they go get a picture with Goofy, because Goofy is his favorite. She held back her tears, gave Goofy a big hug, and said “Goofy, you have no idea how much I needed that hug.”

Zach has a bright future. I hope it brings him back to Disney. I hope Disney listens.

August 4, 2011

When words collide

I enjoy the MacBreak Weekly podcast. Leo Laporte, the podcast host, is a huge fan of longtime sponsor Audible.com. He speaks frequently about how many audiobooks he “reads,” and this always gives me pause.

Hearing someone recite a text is equivalent to reading for some people, I guess, but it very much isn’t for me.

Verbal input, whether I see it or hear it, triggers huge cascades of mental processing. I am prone to becoming immersed in those cascades: analyzing word roots, parsing the grammar, identifying more appropriate synonyms, feeling the scansion, relating the meaning to the immediate and overall narrative context and to everything else in my experience.

Douglas Adams, in The Hitchhiker’s Guide to the Galaxy, describes Arthur Dent and Ford Prefect’s experience of being subjected to a Vogon poetry reading, strapped into “Poetry Appreciation chairs” with electrodes stuck to their temples:

These were attached to a battery of electronic equipment—imagery intensifiers, rhythmic modulators, alliterative residulators and simile dumpers—all designed to heighten the experience of the poem and make sure that not a single nuance of the poet’s thought was lost.

That’s what reading and listening are like for me, all the time.

When (or if) that cognitive bloom finishes playing itself out and my brain settles down enough to return me to my senses, I move on and take in the next bit of text—but if the text is being read to me, then I have already missed any number of words (sentences, paragraphs) that were spoken in the interim. Normal interpersonal conversation is light enough for me to keep up with, but really good dense prose just jams up in my ears.

Verbal communication is linear, but I do not comprehend it linearly. I can’t listen to audiobooks.

June 19, 2011

Eddies in the data-time continuum

Copying a terabyte hard drive. A few minutes in:

Screen capture of remaining-time estimate: 22 hours

One minute later:

Screen capture of remaining-time estimate: 12 hours

And two minutes after that:

Screen capture of remaining-time estimate: 22 hours

Yeah.

May 3, 2011

Whence Osama

Fifty-four years ago in Saudi Arabia, a little boy was born.

His bright young mind was poisoned by a dogmatized rejection of common human dignity. He was molded into a conduit of hate. By the time he was killed by his enemies, he had become a wellspring of that poison.

I mourn the loss of the helpful person that little boy could have become, of the profound gift his talents could have been to the world. But that loss was long ago.

My answer to this crime, this cancer of the human spirit, this turning of life against itself, is a plan I have been executing for fifteen years.

I am raising my sons to be good people.