Hello Kitty Magic

We were looking for something special to do in LA that would give our girl a break from the challenges of Dementiaville (aka helping take care of grandma).

Of course our girl Sweet M would always go for Disneyland. But the Magic Kingdom with holiday crowds and a new and not-so-great disability access program didn't sound too magical to me.

Where would we find our magic? Turns out it was at the Japanese American National Museum in Little Tokyo where the current show is Hello! Exploring the Supercute World of Hello Kitty. Our girl was watching the evening news one night and heard about the exhibition, told me about it, and we got organized to go. I'm so glad we did.

Gown for Lady Gaga made from
Hello Kitty plush toys.

Sweet M was enchanted — she was in what I can only call an aesthetic rapture. Part way through the exhibition she was just exploding with joy: "It's just *so* beautiful!" she exclaimed. If an anesthetic is supposed to make you feel nothing, an aesthetic should make you feel something. And feeling she was: just thrilled at the scope and scale of the Hello! exhibition — at the massive, fantastic kawaii cuteness of it all.

As we turned the corner into the second to last room of the exhibition, slipping passed the gown for Lady Gaga made of Hello Kitty plush toys, I came upon signage that read:

SOCIAL COMMUNICATION 

One of Mr. Tsuji's* passions has always been products that foster "social communication." Thus the "hello" of Hello Kitty carries the meaning of reaching out in friendship. Sanrio's early goods focused on the means of communication— such as stationery, pens, and erasers — each with the cheery visage of Hello Kitty. . . . 

And then, on the very next wall:

For some Western critics, Hello Kitty's mouthlessness symbolized powerlessness.
But Japanese people understand things differently. They assume Hello Kitty's design to be an abstraction. A typical Japanese comment: "Hello Kitty has no mouth? I never noticed."

I had never noticed either, so it's not just a Japanese thing. No mouth! And social communication as the emphasis of the earliest product lines . . .  How perfect is it that the Kitty is one of the characters my communication-challenged girl loves most?

And the fact that there was a dress worn by Lady Gaga in the show made this outing even cool enough for her to talk about today, the first day back to school. As you may know from earlier posts here, finding a way to love what she loves and still be cool isn't the easiest thing for this seventeen-year-old Kitty fan. But Hello Kitty works some magic, making her developmentally atypical tastes a moment of cool.

Thank you Kitty-creator Mr. Shintaro Tsuji and exhibition curators Christine Yano and Jamie Rivadeneira! You've made one autie-Kitty-lover and her mom ever so happy.

* Mr. Tsuji is Hello Kitty's creator and the CEO of Sanrio that markets the Kitty's product line.

The Willful Child

On Tuesday the principal of our girl's school called because our girl has been more anxious than usual of late — she's fallen back into that habit of raising her hand and frantically waving to be called on.  She's been irritable and snaps at classmates and teachers. The principal was also calling to talk about the upcoming IEP meeting: about whether we could somehow get the Department of Education to support summer services for our girl, or whether we should be pushing to move her to a school with an 11-month program and a much longer commute.

So once again, we arrived back at the question of what is an appropriate setting for our girl. That has been the question that has animated this blog from the outset: what sort of world will work for a girl on the edges of the autism spectrum?

When I'm confronted with these very difficult life questions — the kind of questions that ask you to make decisions on behalf of someone you love without really having any idea of what would be best (or even good enough) — I sometimes run in the opposite direction.  Instead of going to one of the many Autism Awareness Month events around the city where the Empire State Building was bathed in blue light, I ran full tilt away from the problems at hand. Instead of going to an autism event, I went to hear British cultural theorist Sara Ahmed talk about her project "The Willfulness Archive."

Ahmed is exploring the role of willfulness in the struggle against oppression and collecting these stories of willful subjects in what she envisions as a mobile archive. She opened her talk by reading a tale called "The Willful Child," from the Brothers Grimm:

Once upon a time there was a child who was willful, and would not doeth as her mother wished. For this reason God had no pleasure in her, and let her become ill, and no doctor could do her any good, and in a short time she lay on her death-bed. When she had been lowered into her grave, and the earth was spread over her, all at once her arm came out again, and stretched upwards, and when they had put it in and spread fresh earth over it, it was all to no purpose, for the arm always came out again. Then the mother herself was obliged to go to the grave, and strike the arm with a rod, and when she had done that, it was drawn in, and then at last the child had rest beneath the ground.

Tale #117 is among the grimmest of the Grimms' household tales, and I found the story particularly difficult to hear. Ahmed unpacked the story quite brilliantly as a metonym for the willfulness of oppressed and marginalized persons who refuse to go along and get along. I heard the tale somewhat more literally: as an account of the struggle of autistic children and their mothers carried down to us through folklore.

At first my thoughts went to the most literal cases of the mothers (and fathers) who murder their children on the spectrum — the ones who beat them or strangle them or poison them or toss them out of windows or off of bridges. My thoughts went to the newspaper headlines that try to explain what everyone imagines as unthinkable: the murder of children who fail to conform and seem to be never at rest, even in their sleep.

Then, following on path of explication that Ahmed explored, I asked myself, what is the rod that the mother wields?  Is it the psychopharmacology that makes it possible for our girl to sit still enough to do her school work, make her paintings, and engage in the occasional conversation? Is it the applied behavioral analysis that made it possible for her to gain some capacity to comply?  Is it the school bell that startles her into the conformity required by the school day? Is it the very diagnoses of autism, of ADHD, of Oppositional Defiance Disorder, that takes her neurology and renders it as pathology.

Is it the incapacity to comply what we are diagnosing when we diagnose these "disorders"? Should cultivating the capacity to go along to get along always be viewed as oppression? And if not, when is it not oppression?  How (or rather, to what extent) is the parent's desire to ease a child's way in the world hijacked by other forces that wish to exact a complacent conformity?

The willful girl's arm rises from the grave. Our girl waves her raised hand frantically in the hope of being able to remember her answer long enough to have it in mind when she's called on. Our girl raises her hand because she longs to belong, longs to get along, longs to be able to go along. So would another two months of school each year, another two months where there is so much to go along with, be a way to help her thrive, or just an extended blow to crush her into a deadened conformity?

Today is a religious holiday of rebirth: a day for writing of bunnies and bird's eggs, of renewal and of budding possibilities. The ghastly arm rising from the grave is a very different sort of resurrection than one typically imagines on a day set aside by the Christian religions for celebrating renewal and rebirth. Partial, grasping, longing, the willful child reaches out to connect, to find a way to grow tall and strong. How do we reach back with open arms?

Dear Diary #2: "I hope my mom doesn't post this on the internet."

Along with the arrival of the locking diary — Sweet M's put the heart-shaped key somewhere I'll never find it! — my own thoughts about what to share and what to hold back have returned in full force. If she's trying to capture her thoughts under lock and key, how much of our life together should I be posting here?

Last month Sweet M and a classmate had a play date and they each left the bookstore with a large stack of books.

Both girls got The Head-to-Toe Guide to You, a Scholastic Girls' Life book. It's a good guide on questions that come up in that life course called "Puberty 101."

Sweet M and I started reading it together. We were only up to page 11 when this came up:

While seeing their "little girl" growing up may be event-worthy, you might need to remind relatives that you body is a private matter—and updates about it don't belong on the family blog. One embarrassed girl tells us "My mom thinks it's perfectly OK to share my bra size with anyone. She even wrote about it in our Christmas letter."

We won't be sharing that info here, or anything remotely similar. Still, the internet is an unusual and quickly changing site of narrative production that confounds the paper-bound rules of publication.

Last month I came across a web-based artwork called We Feel Fine by Jonathan Harris and Sep Kamvar. If you haven't seen it, go take a look. It's a beautiful interface that mines data from thousands of blog and then provides an array of visualizations of the affective temperature from the posts it has scanned, tracked and coded. The visualizations are dazzling. The data-mining is a little scary. Ultimately, the artwork can take you back to the original post from which an emotional term or phrased was culled.

So your blog post or mine can be pulled out of context (I think of my context as the posse of autism parents who blog about their lives, challenges, and victories) into a broader context or framework sorted simply by affective phrases.

The phrase might be "I feel fine." Or it could be "I am feeling enraged" or "cheerless" or "depressed" or "delighted." And then it can appear sorted with hundreds of other similar words or phrases. So any post you or I make that has the phrase "I feel" or "I am feeling" can become part of a massive data set for Harris and Kamvar's semantic web artwork.

Part of me loves this—the possibilities for visualizing our lives together becomes so rich. And part of me is terrified of the implications. What will the uses of this technology be? How will our words be understood when they're pulled out of their original context?

Unlike traditional social science research, where data are aggregated (lumped together) and anonymity assured, in We Feel Fine the data are both aggregated, and also easily disaggregated, thanks to the powerful new tools emerging to mine the semantic web. Disaggregated means that the individual phrase or data points right back to its source: you or me on our blogs.

No one has the expectation that a blog post is a diary entry under lock and key. That would be madness. We all understand that a blog post is a publication with a reach that can extend beyond any print publication.

But I wonder (and I feel worried—that's a phrase that Harris and Kamvar's bot scans for) about how these tools will pluck our language out of context for purposes we can't even begin to imagine.



Screenshot of We Feel Fine: Worried: Murmurs, May 30, 2010