Dear JoAnne Fluke:

I looked up "caudal regression syndrome" to learn what you'd been living with since the day you were born. And I grasp the basics: your spine is shaped differently from most people's. The base of your spine wasn't formed the way mine was.

That's why you move in a wheelchair. That's why your life and health have been, your whole life, uncertain in a way mine haven't. You have had to face your uncertainties.

That part I get. But when the articles described this rare syndrome's effects, the words they used were foreign and wrong. Who could use these words for you? Malformed? Deformed? These words are for no one; they are not for any human being. And do you know why I understand this now?

Because I've seen you dance.



Thank you for filming your videos. Thank you for letting us watch you render your body as art, exploring your power and sensuality. Thank you for being one of Chris Pruitt's teachers (as every partner teaches the other about touch, the gaze, about intensity) and for working with him to bring others in their wheelchairs to the dance.

Oh, Ms. Fluke, with the uncertainties of your life, what did you do? Pursued an education, and not one with a light courseload. Started the Groovability organization to teach wheelchair dancers and competed with your team in ballroom competition. Won the Ms. Wheelchair Kansas title. Became a public speaker and advocate for accessibility.

You know, none of us knows how long we get to live. But some of us face that question more directly and for more of our lives than others. What did you do in the face of that question?

You danced.

It's not because you are in a wheelchair or in spite of your wheelchair that your example shines. It's because we all want the bravery to respond to life this way, and we need people to show us it's possible.

Ms. Fluke -- thank you for showing me how to dance.

I'm wishing (and will be doing more than wishing) for your continued funding; for Groovability to be visible in this city; and for more Chris Pruitts to learn to dance.

Sincerely,
Ann Elizabeth


Wheelchair Dancing Links
All the Groovability videos - be sure to check out the tango!
The Groovability site and Bella Studio
America DanceWheels Foundation
JoAnne Fluke as Ms. Wheelchair Kansas
About caudal regression syndrome
Groovability in the Accessible Arts newsletter (page 7 of this PDF)