This Ability

Who am I in the process of becoming re: Disability?

I just got back from a short, intense trip to visit two kids.
One nine years old.
The other ten.

They live about one mile from one another, 45 miles north of me, in a nice suburban neighborhood in northern Colorado.

I went up there because both kids have Cerebral Palsy.
In this case, that means something happened around their births that injured their brains.
The traumas to their brains made it extremely difficult for them to learn how to move on their own.
So they’ve both had uncommon childhoods.
Both have extreme difficulty controlling their movements.
Neither one has learned (yet) to roll from their back to their side without assistance.
Neither has learned (yet) to sit up without help.

So, that’s the trip I just got back from.
I spent two days working (or dancing or playing) with these two kids.

During the trip and afterwards, I’m thinking about disability.

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Disabled Country

Have you heard of Neil Marcus?
He wrote this poem:

Disabled Country (n.d.)

If there was a country called disabled, I would be from there.
I live disabled culture, eat disabled food, make disabled love, 
cry disabled tears, climb disabled mountains and tell disabled stories.

If there was a country called disabled,
Then I am one of its citizens. I came there at age 8. I tried to leave.
Was encouraged by doctors to leave. I tried to surgically remove myself from disabled country but found myself, in the end,
staying and living there.

If there was a country called disabled,
I would always have to remind myself that I am from there. I often want to forget. I would have to remember…to remember.

In my life’s journey I am making myself
At home in my country.

Neil was as an artist, dancer, poet, and activist.
I love his nuanced and deep expression.

I met Neil a couple times when I lived in the Bay Area.
My clearest memory of him is when I took a class he taught with Petra Kuppers.
I remember the wonderful time it took for Neil to speak his sentences.
There were big, beautiful pauses between many of his words that felt extremely pregnant.
I was full of anticipation, on the edge of my seat, waiting to hear what he would say next.

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The View from here

Both of the kids I saw in Fort Collins have caring, committed parents who hired me to come work with them.
(Or dance, or play, depending on how you think about it)

The parents and kids have been engaged in this kind of work for years.
The Feldenkrais Method.
The Anat Baniel Method.
Many different practitioners.
And both kids probably do other alternative “therapies” or learning activities, as well.

Part of my job, as a Feldenkrais practitioner, is to hold a certain view about disability: that even after severe brain injury, the brain and nervous system can form new, meaningful connections that improve function.
Basically, where there’s a brain, there’s room for growth.

I think about the lines from Neil’s poem, “I tried to leave [Disabled Country].
I was encouraged to by doctors to leave.”
I worry, for a moment.
Am I foolishly trying to get them to leave?

Then I think about Neil’s line at the end, “I am making myself at home in my country.”
And I feel less worried.
Because that’s my view,
that it’s possible and good for these kids to feel more at home in themselves.

Holding this view is an ability I practice.

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Vulnerability

During the trip, in the middle of the night, I was thinking about all this.
Particularly, I was coming up with "solutions" in my head.
Rehearsing things for the next day’s lessons.
What’s gonna work best?
Thinking, “Oh, tomorrow I could try this.
Maybe I’ll say that to the dad.”

And then I caught myself.
Perseverating.

Then a voice of reason came in,
“Stop.
This is all conjecture.
Who knows how any of this will actually play out?
You know it’s actually going to be improvised.
It’ll be based on my years of experience and their years of experience.
Where our collective years of experience overlap, in the moment,
the lesson will take place.”

Then something very strange happened to me.
Not a voice.
Not reasonable.
In the middle of the night,
an image.
Not quite a dream, but pretty much:

Somehow, I’m putting a knife or a sword into my own chest.
(Remember, this is just an image, and I already admitted it’s strange).
Somehow, I am piercing into a deeper part of myself.
It’s the moment of injury or wound, but not violent, just piercing in.
And some blood from within.
It’s tender inside myself.
Pain and vulnerability.

I'm not sure what this means.
I’m not sure how it relates to working with the kids.
But it was a distinct experience.

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So I guess that leaves me somewhere slightly new.
I worked with the kids the next day, and experienced all the things I’ve come to associate with this work.

Challenge.
Interest.
Confusion.
Hope.
Satisfaction.
Meaning.
Connection.

And plenty else I can’t articulate.

Now there’s this lingering question:
How are vulnerability and disability related in me, in this process?

Maybe vulnerability is an ability and a disability, at the same time?

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If you’ve read this far and you have anything to add/suggest/reflect from your own experience, I welcome anything you care to share.