Saturday, January 28, 2012

The Peking Acrobats, Redux

My favorite post from my first year of blogging (all the way back in 2008!) was called Spin, Spin, Spin. It referenced an occasion when I'd gone as a chaperone with Rose's class on a field trip to see the Peking Acrobats, and one particular part of the act where a troupe of women danced while spinning multiple plates on sticks. I mused that the spinning-plates act had a great deal in common with my life!

Actually the controlled chaos of the field trip itself was something of a spinning plates act. Busloads of kindergarteners and first-graders from all over the district descended on Madison's Overture Center, vying for downtown space to disgorge their noisy wriggling kid-loads, who then all had to be organized and seated for the show. There was enough noise and waiting that I recall it was at least mildly anxiety-producing for Rose at the time, at least until the show started.

It wouldn't have been Joy's scene AT ALL.

In fact, four years later, it still isn't. Joy doesn't like chaos, or noise, or waiting. (Heck, who does?) She doesn't cotton much to sitting still, either. Sitting through a long performance in an unfamiliar venue after the chaos, noise and waiting would be a recipe for deep unhappiness, for Joy and for those around her.

When the note came home that Joy's class will have their turn to see the Peking Acrobats this year, I thought hard about how to do it. Of course we could demand that her staff figure out how to make the trip work for her, but at what cost -- and what are we trying to teach? Surely one day we'll be able to manage large public performances: maybe with accommodations, maybe without. But that's a goal to work on in increments, not by jumping into a situation where she'd be locked in to staying on site the full time because of bus transportation, in a noisy sea of hundreds of kids in a huge strange theatre. This is not, we decided, a field trip we want to inflict on Joy at this time.

We got a video instead.

Librarian that I am, I first went looking for a DVD to borrow. It turned out, though, that the only video out was too recent to be in libraries, a just-released DVD from the Peking Acrobats 2011 tour. So we bought a copy of our own.

Turns out there wasn't an online-ordering option, so I had to make a call and talk to a person. The call brought up some interesting echoes of some of the readings we'd done for the Partners in Policymaking program that I'm participating in, that started last weekend. (My next post will have more description about the program, I promise... it's off to an amazing start so far.)

Two of the readings, both by Kathie Snow of, talked about how parents and professionals tend to un-necessarily blab details about their kids'/clients' disabilities in situations and ways that we wouldn't dream of talking about people without disabilities. Here's a sample from The Problem with "Problem" (.pdf):

We don't usually share intimate details of our own lives with casual acquaintances, but we routinely expose the lives of people with disabilities for public consumption. Parents, accustomed to reviewing a child's history with every professional they come in contact with, frequently get in the hapbit of blabbing very intimate details about their children to other parents, educators, and even strangers in the grocery store! ... In general, we reveal intimate details about people with disabilities even though they have never given us their permission to do so. How dare we behave in such an arrogant and patronizing manner?

Even after this, and an additional piece called The Lost Art of Manners (.pdf), I still (gratuitously) told the guy on the phone when ordering the video -- why I was doing it. That I had a daughter with developmental disabilities whose class was going on a field trip to the Peking Acrobats show, the live show wasn't going to work for my girl, so the video was a substitute experience. It was a snap decision, quickly balancing the readings vs. a vague impulse in favor of awareness-raising.

On the one hand, I so totally didn't need to do that. If I'd had a chance to order online, I'd have typed in a bunch of keystrokes and the order would have arrived all depersonalized, no story attached at all.

On the other hand, the fellow who took the order seemed grateful to know that we valued the show enough to make an extra effort. He ended up sending us a free DVD of Jigu! Drums of China, another act represented by the same production company.

I feel pretty good at this point about the decisions we've made regarding this upcoming field trip. Others might disagree, be appalled, whatever.

Actually, the whole disability-mommy-blogging enterprise leaves lots of room for disagreement, appalled, whatever. Or mommy-blogging in general, as we spin intimate life-details into the blogosphere for the consumption of anyone who happens to wander by. In fact, as far as social media is concerned, things have changed since 2001 when Kathie wrote "We don't usually share intimate details of our own lives with casual acquaintances." Facebook and blogging and YouTube et al. have altered that equation immensely, disability or no.

It's a balance. I'll have to continue to cogitate, both about this blog and about my in-person conversations. As Joy continues to grow up, as I learn more and my thinking evolves, the balance will likely change.

Meanwhile, speaking of changing the balance -- I notice as I read how I described my life in the Spin, Spin, Spin post -- there was nothing about policy advocacy in there. No spinning plate designated for legislative contacts or Board work (or protesting, for that matter). How things can indeed change over the course of a couple of years!

Monday, January 23, 2012

Stuff We Don't Let Her Do

So I was home with Joy today in between school and her afternoon therapy session, and she was happily watching a video upstairs in the living room, and I thought "Surely it wouldn't do any harm to sneak downstairs and answer a quick e-mail, right?" So I did that, and then one e-mail led to another, and then I quick peeked at Facebook, and Joy was still making happy sounds and so several minutes did go by before I trotted upstairs again to check.

And there was Joy, with her sister's new Christmas camera, which had been imprudently left on the mantel that morning.

The camera was on, rather surprisingly, since it's one of those little streamlined smaller-than-a-deck-of-cards cameras with a not-at-all obvious on/off switch.

More surprising still were the photos on the camera.

Uh-huh. Joy had been taking pictures.

Here's her foot on top of last year's Christmas fleece-boa:

Here's an artistic blurred shot out the living room window, with a bit of a reflection from the video that was still playing:

Here's a shot of the cabinet under the TV:

And here's a partial self-portrait (there were more complete ones too):

My girl took thirty-six photos before I showed up and put an end to the fun.

We didn't teach her how to do it. We've never let her so much as hold a camera before.

WHAT ELSE can she do that we've never let her try?

Monday, January 16, 2012

She Has a Dream

I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.
--Dr. Martin Luther King, Jr.

In the middle of a conversation about school earlier this week, Rose told me about an activity that her class had done. In anticipation of the holiday in honor of Martin Luther King, Jr., they talked about King's famous "I Have a Dream" speech, and then they were assigned to come up with a dream of their own to share with the class.

Rose's dream was that her sister Joy would get a good education and go to

It shouldn't take a prophetic voice to articulate what I grew up with as a basic expectation in my own family. But sometimes it does.

We've been cautious about educational expectations for Joy, as you may well have picked up if you read my reflections on the ABLE Act. It's hard to see college when your first-grader still doesn't meet most of the standard criteria on the kindergarten-readiness lists.

And yet, it's all too easy to fall into the "soft bigotry of low expectations." (That phrase has entered into the conversation so completely, I was surprised when I looked it up to see where it had come from. I see it as rather an ironic source to use on this day of all days, but there's an important truth carried in the words.)

Here's how Kathie Snow, who writes at, put it in her essay "The 'Right' to a Normal Life" (emphasis is mine):
Is a child with a disability given an allowance? Expected to help around the house? Taught how to use the phone? ... Is the child expected to participate in and experience the traditional, ordinary, typical activities of her brothers, sisters, and similarly-aged children? Is she expected to achieve an academic education which will enable her to attend college, vocational school, and/or be employed in a real job? Do we expect the child to leave home one day, live on her own, get married, and live a REAL LIFE as an adult? When we don't encourage and provide typical experiences (and have high expectations), we're robbing the child of the "right" -- the opportunity -- to lead a normal life.
I had just read Snow's piece as preparation for a program I'll be participating in over the next six months, Wisconsin's Partners in Policymaking, a training for self-advocates and family members who want to learn to influence public policy around issues of developmental disability. In fact, I'd read it the very morning of the day that Rose told me of the dream she'd shared.

No coincidences!

I know I'll be paying a lot more attention to our expectations for Joy in the coming months. In a couple of long-overdue baby steps, we've begun serving her meals on the same ceramic plates as the rest of the family, instead of the plastic pocket-plates she's used up to now, and transitioned her to Rose's beloved "Cooshie Booster" instead of the buckle-in booster that's been the default (she's way past big enough not to have to buckle in at mealtimes!)

There will be other changes too -- small steps can go big places.

If we're going to live in a nation where Joy will be judged, not on the elements of her disability, but as a capable human being who will spend her lifetime learning and growing and achieving, we need to lead with high expectations ourselves.