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 DisabilityIsNatural.com, 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!
