Plus

I’ve started sitting in on Lilia’s math class once a week so I will know how she is learning and have a better idea of how to help her. Actually, all of the mothers are encouraged to do this. I may start sitting in on Japanese, as well, although my presence tends to be a distraction for Lilia. Anyway, here’s what I learned in the last math class: in Japan, there is a right and a wrong way to write the plus sign. First, you write the horizontal line, then the vertical line. Now that’s one thing I never would have known if I hadn’t been sitting in.

In other news, today is my birthday. That means there will be no cooking - at least not by me.

Integration

D. is leaving. Next year, Lilia’s clasmate D. will integrate into a regular public school. So while once there were six, in the spring, there will only be three - and one of them is autistic and doesn’t spend much time with the others.

I am happy for D., and I think it’s the right thing for him. He is bright and uses his cochlear implant well. He hardly uses sign language at all anymore, and speaks very intelligibly. Plus, he can read and he’s good at art. One of his paintings won first prize a couple years back in a national competition of deaf school students. Of late, he has been show-offy and disruptive, writing math problems in kanji, for example. Clearly he needs more of a challenge. Some kids at his new school may wonder about his apparatus, and he may have a hard time keeping up with conversations, but I think he’ll be fine.

I wish Lilia could integrate, too. In the past, I thought that the deaf school - a place where her first language, JSL, is the predominant form of communication - was the best place for her. Also, I would worry about bullies if she was in public school. But with everyone leaving, it just gets lonelier and lonelier. And while I don’t want my daughter to be the sacrificial lamb, I don’t think that Japanese people will learn to be truly accepting of the disabled unless they go to the same schools.

Unfortunately, I don’t even think it’s an option. D. is going to a school with a “deaf track,” but the teacher who helps the deaf kids has no training in special education and doesn’t know sign language. A principal at another school with a “deaf track” said that deaf children could only attend his school if they could communicate verbally.

For awhile, at least, Lilia will stay where she is.

Zip Zip My Brain Harts

My friend Sean introduced me to the work of South African photographer Angela Buckland . She is the mother of an undiagnosed disabled child and she takes up the subject of parenting disabled children in her photographs. The recently published Zip Zip My Brain Harts includes images from five different series. The first, Dysmorphic Series, deals with the frustration that Buckland felt as her child went through numerous inconclusive tests. Images of her son Nikki’s skull are juxtaposed with those of his physical abnormalities. These photos are haunting and disturbing, but never freakish.

The second series, named Stickytape Juice Collection after the words of a cerebral palsied child with a love for language, are of clothing “lovingly” altered to accomodate and disguise a child’s disabilities. These shots also raise conflicting feelings: is it better to try to hide a child’s disability, or be frank about it and deal with the stares?

“Where’s Nikki?” named after Buckland’s son’s tendency to run away, explores the stages that parents of disabled children are said to go through - shock, loss/grief, rage, confusion, relief, acceptance, and hope. My favorites of these are of Sibongile, a Zulu girl with cerebral palsy. Specifically, I love the one of her being carried by her caretaker aunt, piggyback style.

The photos in the final series, “Shadow Catching,” are elusive, mysterious, and beautiful, as many disabled children are to their parents.

The accompanying text written by researchers of disability issues is worth reading, too. Although South Africa’s cultural mix is different from that of Japan, these words from the introduction apply here as well:

“There is a tendency for disability in South Africa to be a secret. The challenges that face families of people with disability are also often hidden away. Part of the reason for this secrecy may be that disability is sometimes seen as a shame or a disgrace, something to hide away, a source of stigma. These reactions are rooted in the idea that disability is freakish or monstrous, an idea that continues to haunt the ways in which disability is seen, and to affect the experiences of disabled people and their families.

“But what if disability were considered ordinary or everyday? What would looking at disability be like then? What if disability were considered not so much as the sign of incontrovertible difference, but as just one among many differences that there are already between people?”

Undokai

Yesterday my was son’s first sports festival at his new school. I didn’t know quite what to expect, or rather I didn’t expect the right thing. I thought it would be like the sports festival at the deaf school where there were tents set up for spectators as well as students. I was wrong. We arrived later than everyone else to find that families had set up folding tables with parasols all around the field (dirt lot, rather), as if at a barbecue. All I’d brought were a couple of “sheets,” squares of plastic, to lay on the dirt. My sister-in-law showed up with a couple more sheets, but we didn’t have anything to shield ourselves from the sun.

My son arrived at school a couple of hours before the event began. I guess they had to do some last minute setting up because of the typhoon the day before. At any rate, when I arrived, he was sitting alone under the students’ tent with a shippu (What do you call those things in English???) on his neck. Apparently he’d pulled a muscle and it hurt to run.

Although the teachers managed to convince Jio to participate in the relay and the pom pom dance, he sat out on a couple of other events. He was pretty miserable the whole time.

Meanwhile, Lilia wound up playing with the only other disabled kid at the gathering, a little boy with a stub where his left hand would have been. I was happy to discover that there was another disabled sibling.

Doglegs

I can’t say that I approve of tying up one’s eight-year-old son and kicking him in the head as a means of consciousness-raising, but the idea of disabled wrestling is interesting.

One Chrysanthemum

Joan Itoh Burk, who is a member of my online writing group, has just published her first novel. She’d written the novel before joining the group, so we can’t take any credit for it, but we’re very proud of her. Here’s what I wrote in Eye-Ai magazine:

“Misako Imai has the gift of second sight – or maybe it’s a curse. At the beginning of Joan Itoh Burk’s astonishing debut novel, One Chrysanthemum, as the wind of a typhoon “dances a garbage can down a dark Tokyo street,” Imai has a vision of her husband with another woman. She realizes that he lied to her when he told her he would be staying late at the office on account of the weather. Another storm, a year before, churned up the bones of a young woman from the pond waters at a nearby museum. Misako’s grandfather, a Buddhist priest, has been keeping the bones in his temple, while he tries to figure out what to do with them. Throughout the following chapters, Burk expertly weaves Misako’s story with that of Kensho, a gangly mixed blood Buddhist priest interested in clairvoyance, and the mystery of the bones.”

Eastern Hospitality

There is this thing that my mother-in-law does that drives me up the freakin’ wall. Although we supposedly live in separate quarters and lead separate lives, whenever I have guests, she hustles over here with a tray of refreshments. I know she’s just trying to maintain a certain standard of Japanese hospitality, but this bothers me for several reasons. One, is that I would like to offer hospitality to my guests in my own way. For example, as an American entertaining foreginers, I think it’s more polite to ask my guests if they’d like something to drink, and then offer a selection. In my experience, my foregin friends answer honestly. When my parents are visiting, they are always getting irritated when unwanted drinks and snacks are foisted upon them.

Also, my mother-in-law’s entrance always turns everything all formal. Everyone must start bowing and being gracious and speaking Japanese. I would like for my house to be a place where my foreign friends can relax. I would like to be able to relax.

Last night, Jio’s friend’s mother dropped by to pick up Jio for soccer. The deal is that I will watch her daughter while the boys are off playing sports. My friend and her kids and her male guest from Australia all came in for a moment while Jio changed his clothes. And then my mother-in-law appeared with her tray. I know she’s just trying to be nice, but I felt so irritate with her.

We had a little chat today and I tried to explain all of the above, but I’m not sure how much I got through to her. She told me a story to demonstrate the importance of ningen kankei (human relations). She seems to have gotten the idea that Americans are all businesslike in their dealings with each other, but that’s not what I meant to say. Also, she pointed out that there was a male guest and he must be given special treatment.

Bonding for Beginners

My short story, “Bonding for Beginners,” is now up at Tales for a Small Planet.

Frustration du Jour

Actually, there are many things that frustrate me on a daily basis, but what I thought about while driving my kids to school this morning was speech therapy.

Before summer vacation, Lilia’s homeroom teacher asked me to consult with the speech therapist at Hinomine, the place where Lilia does PT and OT, about exercises that she could incorporate into the school day. Lilia’s teacher has a degree in deaf education, but apparently doesn’t know much about speech therapy.

Lilia had speech therapy once a week in kindergarten. Her teacher there wasn’t a specialist either, but the exercises (blowing up balloons, etc.) seemed somewhat effective. Although now I’m wondering what kind of progress Lilia might have made had she had a highly qualified speech therapist.

Over the past years, teachers have blamed Lilia’s lack of speech on me, for speaking English around the house; on her cerebral palsy (though her physical therapist says there’s no problem with her mouth and she can eat just fine); and on her use of sign language. (Why bother to speak when you can sign?) The teacher she had for the first two years of kindergarten said she wasn’t like normal deaf children, whatever that means.

At any rate, Lilia is a very vocal child and she has finally gotten to the point where she can utter two syllables in one breath and can make all the vowel sounds. I believe she can do better.

So I asked the speech therapist at Hinomine to suggest some exercises, etc. He said that he would need some time to assess her. Over the next month, I brought her once a week to him after four hours of school and before two hours of OT and PT. It became clear, pretty quickly, that he couldn’t engage her/control her. Lilia is a very willfull child. She tends to tune out or try to escape when she finds something too difficult.

After a month, the speech therapist announced that he couldn’t do anything with her, and that she’d be better off in a group setting where other children would motivate her. And by the way, there is no group speech therapy at Hinomine.

So back to square one.

Always

I tend to enjoy movies featuring characters who are writers. “Always” (”San Chome no Yu Hi” in Japanese), which Yoshi and I watched last night, featured two scribes. The first one, Chagawa, lives behind a candy store in a 1958 Tokyo neighborhood. He is, as he drunkenly reminds his neighbors at the corner bar, a one-time finalist for the prestigious Akutagawa Prize. He’s also a graduate of Tokyo University, but his neighbors, including the guy who owns the auto repair shop across the way, call him a “literary has been” and tease him about the rejections of his stories that come in the mail.

Chagawa actually does make a living at writing boy’s adventure stories. In his own eyes, he’s a hack, but then one night, while drunk at the corner bar, he becomes guardian of an abandoned child. As it turns out, this boy, Junnosuke, is an avid reader of Boy’s Adventure Stories, and a big fan of Chagawa himself. Suddenly, the writer finds himself idolized.

The second writer in the film is ten-year-old Junnosuke, who is taunted by the neighborhood kids at first, but then wins their admiration and friendship through the adventure stories that he writes.

The stories of these two are woven with those of others in the neighborhood. It’s a feel-good flick, offering a slice of life in post-WWII Japan, when the country was just starting to pull itself up by its bootstraps, and the Tokyo Tower, then under contruction, was a symbol of hope. This film was very popular in Japan. It made me laugh, it made me cry. Trust me: you’ll like it.