Monday, May 07, 2007

Stairs that Go Nowhere

Aidan had a seizure last night, so that is what is on my mind. I thought I'd go back to this site, which I linked to once before.

Aidan can't yet articulate how he feels about what he goes through, so Norman Kunc's perspective is helpful to me. Kunc's aim doesn't seem to be about proposing quick solutions so much as being a voice to help people understand how it is from the "therapized" side. What I get from his writings is that there is no quick fix, that in our "therapeutic" approach to what is called "disability" we are dealing with something as complex as human nature, because it IS about human nature in all its complexity.

He says:

Try to keep your mind still, long enough to appreciate the complexity of what is being said. I don't think people need to be members of an oppressed group in order to listen.

This is from an interview titled The Stairs Don't Go Anywhere -- and this quote below particularly resonated with me, because at PT, Aidan does walk up these stairs that go nowhere and though he is still at the stage where he takes delight in accomplishment whether or not it serves an immediate purpose, I have often wondered how he feels about some of the more arbitrary "tasks" he is faced with in his therapy.

I remember thinking that the physical therapy room was a very weird place.

Michael: Why do you say that?

Nortman: They had all this strange equipment and weights and mirrors and bars. But the weirdest part of the physical therapy room was the staircase. There was this staircase with a handrail on either side but the stairs didn't go anywhere -- they went right into the wall! The physical therapist would come up to me and say, "Walk up the stairs."
And I'd say, "Why? They don't go anywhere."
But she'd say, "Never mind, walk up the stairs." So, I'd walk up the stairs and nearly kill myself getting up there. When I got to the top the physical therapist would say, "Good! Now walk back down the stairs."
I'd say, "Wait a minute! If you didn't want me up here in the first place, why did you ask me to walk up here?"

Michael: Did she give you a reason?

Nortman: She would say, "You want to walk better, don't you?"
I didn't know any better, so I said, "Yeah."

And what I learned at that moment in life was that it was not a good thing to be disabled and that the more I could reduce or minimize my disability the better off I would be. When I was in segregated school, I fundamentally saw myself as deficient and abnormal. I saw myself as inherently different from the rest of the human race. The implicit message that permeated all my therapy experiences was that if I wanted to live as a valued person, wanted a quality life, to have a good job, everything could be mine. All I had to do was overcome my disability No one comes up and says, "Look, in order to live a good life you have to be normal," but it's a powerful, implicit message. Receiving physical and occupational therapy were important contributors in terms of seeing myself as abnormal. Every part of my life, from the minute I was born, told me that I was abnormal, whether it was getting physical therapy, going to Easter Seal Camp, or wearing leg braces at night.

Here's another place where I blogged about the sometimes -artificiality of the therapy industry.... perhaps unavoidable in some circumstances, but something to be clear-sighted and mindful about.

"Child-Garden and Special Needs".


Kaber said...

What Norman said is very intruguing, but at the sme tiime, as a mom, I want to help my children improve- not so they 'fit in'. but because, well, If they can bebetter at something I want them to try to read that better and not just wallow in not trying and not being their best.

It is a bit of a codundrum- to tell our kids they are perfect and great the way they are and still insist they improve.

I hope your son's doing well after the seizure

I finally got a new blog posted. mostly pictures and bit about Manuel

Willa said...

"It is a bit of a codundrum- to tell our kids they are perfect and great the way they are and still insist they improve."

Yes, but I suppose that is our job. The late Pope used to say: "Become who you are." I think of that often. We want them to meet their potential.

I suppose what Mr Kunz is talking about is a perception that in order to be OK, you have to grow into someone you're not. There is a difference between trying to be your best, and trying to be something you can't really be.

Probably all of us have had experiences where we are made to feel "not OK" in who we are. That is different from being encouraged to improve to be our best selves. Probably there is even more of a barrage of this when you have been put into the world of therapy, especially when you are a child.

I agree, there's a balance and it can be tricky! I do notice that at home, I try to make it so that Aidan's therapy is personally meaningful for him. I've noticed that his therapists often try to look for ways that goals can be accomplished as by-products of activities that have purpose for him. For example, right now his baseball coach has all the kids doing stretching exercises. It is just normal-kid stuff, and Aidan loves being part of it. At home, we can continue the stretching exercises, which also help him with therapy goals, but as a by-product.

Anonymous said...

I think there is probably another harder point though in this. Which is if you accept that there will always be limitations for some people (though don't all of us have limitations?) what do you choose to focus on? For example, is it more worthwhile to spend all this time, energy and brain power controlling your muscles so that you can walk "normally" or would it be better to use a mobility aid (a wheelchair, a cane, or whatever is appropriate) and spend that time, energy and brain power (all of which are limited) to do something else like make music or art, or learn physics or whatever.

And maybe that is what he is getting at. The things that indicate "normal" are things like walking. And so many people with disabilities have had an inferior education because the focus has been on these tasks. If we had a society in which we accepted that some people need mobility aids (as we accept that some people need visual aids, aka glasses), maybe things would be different.

Something to ponder. (And not in any way a criticism of your approach, which I don't know enough about to begin to comment on.)