8 September 2013

Ian Brown & Walker Brown [Peter Power]

from Ian Brown’s The Boy in the Moon:

Occasionally I had an even more radical thought: I could just fall into caring for Walker. That thought had some appeal too, a soft smothering fated feel. I suspect many mothers, and especially many single mothers, know it — neither optimistic nor pessimistic, merely resigned. At least that way I could avoid the resentment, the awful changeovers from my watch to my wife’s and back again. One of us would at last be in charge. . . .

The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest. . . .

Suddenly he swooned, and fell, like a slipping stack of plates, into my arms. I saw him look and aim himself. There was no mistaking what was happening: he was having a seizure. I had heard accounts of seizures in other CFC children, and the staff at his home had thought on two occasions he might have had a mild attack. But I had never seen anything like this, not in Walker. His eyes began to twitch back and forth like metronomes; his arms jerked faintly. His heart, I could feel it through my legs, was racing like a robin’s. He was trying to look into my eyes. He looked scared.

“Do you need some help?” another parent asked from the vestibule, but I shook my head no. I knew what to do. I knew to cradle his wan body in my strong body, wait with him while the shuddering passed, be there when his twitchy eyes found me again. Two minutes went by. It was unlike any other thing. A random and uncontrolled firing of neuron: that is the medical explanation of a seizure.

But it wasn’t that which filled my mind. I held him in my arms as quietly as I could, and I thought: this is what it will be like if he dies. It will be like this. There was nothing much to do. I didn’t fear it. I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success: only what he was, a swooned boy, my silent sometimes laughing companion, and my son. I knew I loved him, and I knew he knew it. I held that sweetness in my arms, and waited for whatever was going to happen next. We did that together.

also from Brown's book, three others he quotes:

Jean Vanier:

you don’t have to do anything. You have to cross out ‘have to.’ Just be. And let it come. What is to come will come. The greatest fear of human beings is the fear of power, and the fear of failure, and the fear of guilt. That we are guilty. What of? Disobeying the law. But what law? We don’t know.

Gilles Le Cardinal:

in a competitive world, you must hide what is weak and wrong. Someone will try to beat you when they discover a weakness, try to take advantage of the weakness. When two players on different teams play, they try to defeat each other. And that is exactly where the handicapped disagree. They respect our mutual weakness.

Denis Noble:

I think we’ll find that the mind lies outside the body, in the neural networks of social and cultural life.