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Sit-Down Strike

September 19, 2012

A few months ago, Joy went on a sit-down strike.

For almost two years, with some months off for surgery, Joy has been taking steps in a Pony Gait Trainer. It’s called a “pony” because it has a saddle she sits astride, which helps take some of the weight off her legs, making stepping easier.

But she’s never had a lightbulb moment when she’s understood why walking is worth the work. It takes a fraction of the effort to propel her wheelchair or to army crawl.

A few months ago Joy sat down in her gait trainer and wouldn’t move.

As her mom, I’ve felt conflicted about the fact that it didn’t bother me more — that I am not absolutely determined to have her walk.

Having the ability to take steps, well-supported with braces and equipment, on a perfectly flat surface indoors is something. But the world isn’t made of perfectly flat indoor surfaces. So her style of “walking” it isn’t very practical. And with quadriplegia Joy will never have the stamina to use walking to get from one place to another; she will always move more freely in her wheelchair.

Still, one of  the unwritten goals of therapy seems to be that every child who has the capacity to learn to walk at all will learn to walk. Somehow.

At least until the child gets old enough to say they don’t want to. Joy can’t articulate that yet. But it seemed to me like she was saying as much by sitting down on her Pony and not moving. Not with sullen refusal. But with tears.

Adults I know who have movement impairment similar to Joy’s, choose not to walk, even if they once had some walking ability. And there’s a solid body of writing from others I haven’t met who concur: accept me as I am and free me to do what I can do, well. Give me a power chair and let me go where you go at your speed; don’t make me laboriously hobble and call it walking  just because you walk and can’t imagine getting around my way.

Well, ever ingenious and very experienced, Joy’s private physical therapist decided it was time to ditch the Pony. She promoted Joy to this Kaye walker, accessorized so Joy can bear weight through her forearms rather than her wrists. Joy can’t sit down because there is no seat. And look what she can do!

If this was video, you’d see her heart isn’t really in it. But Joy likes to please and loves praise and for now, the novelty of the new contraption is fun. (So is the favorite toy I’m holding out as bait just outside the frame of the photo.)

So Joy’s sit-down strike is officially over.

And mine?

I’m stuck in an awkward crouch: half-way up, half-way down. As long as Joy is interested in walking, I’ll help her. But I’m consciously rejecting the idea that she must walk.

It’s impossible to embrace alternatives when our arms are still wrapped around the hope of typical.

That’s a lesson I learned in that other school of brain damage, FASD.

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