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.
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".