In the old days I had wondered more than once if my fortune had not been too good. Half as a literary exercise, I had mused about what life had in store for me, guessed that if the poets were right there must be waiting some whips and plagues to set the balance right. After my childhood ended I had so much luck — dear husband, friends, my lot cast in pleasant places, all, somehow, summed up in my golden babies, born to comfort, cultivation, intelligence, beauty, health. It is hard not to be proud of one’s luck. Hubris is part of us; knowing its name does not help one escape it. Irrationally I had felt that in some way I had deserved all I had, that I had made it happen. We deserve nothing, except to be human comme les autres. It is a slow lesson; the mothers in the hospital had learned it. ‘Call no man happy before he is dead,’ said Solon. The instrument chosen to humble me had the exquisite appropriateness the Greeks noted in the operation of impersonal powers like Fate — or Biology.
4. Willed Weakness
‘On the other hand she enjoys being played with physically, she likes to have her parents enter into the games she uses, and these findings do not fit well.’ We were thankful for these findings, and that they did not fit that most hopeless of possible diagnoses. It suggested that the condition was not entirely hopeless after all. It could be modified. We had modified it already. It was natural enough that Dr Blank should think that the pathetic, rudimentary reciprocity he noted was spontaneous. Only we could know it was not. The uncertainty of his diagnosis was our best reward so far for our work with Elly.
At that time we had been at work for twelve months. For a third of her short life Elly had been under siege. As soon as she had come out of the hospital for the first time we had begun to devise our strategems. These next chapters will describe them, and with them Elly’s progress from twenty-two months, when I first began to keep a written record, until the age of four. Later development will be described in its place.
I have written already that when we brought Elly home that first time, speechless, uncomprehending, still unable to walk, we did not want to fool ourselves. The doctor had felt she was still classifiable as normal. Yet we grasped well enough that this low-grade normality was no normality at all given the environment Elly lived in. Institutionalized babies, perhaps, or children bewildered in distracted families where speech was rudimentary and noise constant, might indeed appear like Elly and still be normal, having good reasons for the simplicity of their accomplishments. Not Elly. Who among the parents we knew had a normal child as slow as that? To dwell on Elly’s alertness, to play with the idea that she was simply withholding her abilities-this seemed the most soft-headed kind of self-deception. The child was retarded — after all, the word does have a literal meaning. She was retarded in what she did. How was it possible to make a distinction between what she did and what she was? Why should we imagine that her retardation was ‘different’? We are proud people, and proud people do not like to feel soft headed. So we did not want to fool ourselves.
Yet at the same time we were determined not to abandon Elly in the isolation she found so congenial. To treat so marginal a child as retarded would itself ensure that she would become so; if she were in fact retarded it would make her worse. Once I had been glad of her self-sufficiency; now I must fight it. She must be approached, played with, taken places, drawn into the family. She had liked being alone, she had spent hours in her crib, sleeping, bouncing, laughing, rocking, rocking, rocking. All that must now be at an end. little as she appeared to want our company, she would have it. She might be content with the rise and fall of a chain; I must find better toys and try to lead her through them to more complex experiences and skills.
It would have to begin with movement and the sense of touch. Compared to touch, hearing and sight are indirect, remote, far less central to the living organism. People can exist without sight or in total deafness. They can be so preoccupied that they neither see nor hear the world around them. Touch them, however, and they will come to themselves. Touch is the most directly apprehended of the senses. The body’s response to things that touch it ceases only with death.
Through sound I could achieve no contact with Elly. Her sense of sight was hardly more promising — she looked at me sometimes, more often than at anyone else, but except in exceptionally favourable situations, as when I greeted her in the morning, she ignored me too.
Unless I came very close. When I touched her, she noticed that. And although she did not seem to hear or see, her small legs and arms and fingers moved. She could inhibit her senses but she could not entirely deny she had a body.
It was in her motion, in fact, that the discrepancy between what she did and what she gave flashes of being able to do first showed. I remember a day when a friend brought her toddler, a little older than Elly, to visit. Johnny had been walking for months. He had rushed into it, as many babies do, before he was physically ready, he had wanted to so much. He had stumbled fallen, but he had walked. We had both laughed when, able to walk but not yet to sit down, he had collapsed from a standing position on to his bottom with a thump. Elly could stand up too. She too sat down, but it was no ungainly flop. As we watched, she lowered herself, legs gradually bending through a squat, into a sitting position, in an exhibition of controlled grace unusual in any child of that age. My friend exclaimed what we both thought: ‘Why Elly, you fraud!’ This the child who couldn’t walk? Obviously she could walk. She would walk as soon as she wanted to put one foot in front of the other. Yet it was months before she did walk.
It was the same with using her hands. She had begun to feed herself with her fingers at about fifteen months, but she did not use a spoon We had done the usual tricks, we had kept a small spoon available, we had provided tempting foods that required it, but Elly had ignored them. One day she had finished her meal and been lifted down out of her high chair, while the family continued eating. Suddenly Elly, hardly big enough to reach the table, grabbed a large, awkward spoon and conveyed into her mouth a large dollop of my dessert. It happened so fast we barely saw it. Then she was gone. We tried her again next day. Her hand went limp. Not only could this child not feed herself, she couldn’t even hold a utensil.
There was, of course, no point in talking to her. A child who doesn’t respond to ‘Elly, here’s a cookie,’ will hardly understand If you don’t pick up that spoon you won’t get any ice cream Yet even pigeons can be shown that rewards are conditional upon performance; the same methods that teach rats to run mazes might have been used to get Elly to hold a spoon.
Today children like her are learning, by means of the behaviour modification techniques developed by psychologists like Ivar Lovaas and Frank Hewett at the University of California at Los Angeles, not only to feed themselves, but to respond to people, even to speak, as the desired behaviour is analysed into stages and every centimetre of progress rewarded to encourage the next small step towards the goal. Today these techniques are taught to parents. But when Elly was two experiments with reinforcement therapy had hardly begun. She was seven before I even heard of them.