The text that follows is taken from Christopher Nolan's now-famous autobiographical book Under the Eye of the Clock (read our review here). We believe it offers a powerful introduction to this issue, devoted to people affected by cerebral palsy (often mislabeled as "spastic").
The variety and range of brain damage—whether occurring before birth, during delivery, or in early childhood—means we cannot offer accounts that cover every situation. For this reason, we have given priority to those who could speak firsthand about the difficulties, the breakthroughs, the frustrations, and the victories of a life tested so severely by a body that imprisons and sometimes destroys communication, independence, and freedom. We are grateful to those who, by speaking of themselves, have helped us understand more deeply the enormous challenges faced by people with cerebral palsy. We ask them to continue helping all of us find the right way, the patience and tenderness needed to meet them in their depths, beyond an appearance that can be so mortifying for them.
The sun shone that day.
Lying in his blue bed, he gazed at the pleasant image of a childish embroidery.
Nora smiled serenely as she lifted him. After washing and powdering him, she settled him in her lap. With affection she slid his little shirt over his blond head. His head jerked forward sharply, then fell back the same way.
Joseph looked at his mother. He watched her with his pained gaze, his lips protruding, his eyes intent on sending messages. He ordered her to look at the sun shining outside. He fixed on her ear, commanding her to listen to the birdsong. Then, bouncing in her lap, he told her again to bend her ears to the sound of village children playing in the schoolyard. Finally he turned on himself. He showed her his arms, his legs, his useless body. Giving way to tears, he shook his head. Looking at his mother, he turned on her—cursed her, gave voice to his bitter rage: why, why, why me?
Confused by the youthful harshness of his capacity to understand, she tried to distract him. She took him in her arms and carried him out into the farmyard. "Come now, come on, let's go see the calves," she said, trying to calm him.
He, desolate, wept even more heavily. He knew why his mother was trying to steer his childish questions away, and childishly, he decided he would not look at those calves; shaking his body, he looked in the opposite direction. His mother tried again. "Look at the lambs down there," she said, pointing to the sheep grazing in the fields. Then he cried so hard that it brought her to her senses. "All right," she said, "let's go inside and talk."
After settling him in his chair, she sat down across from the child he once was—yes, his golden-haired accuser. Meanwhile, he did not stop crying, convinced he had silenced her. Looking through his tears, he saw her lean down to look into his eyes. "I didn't choose for you to be born disabled," she said. "I would have wanted you to be full of life, able to run and jump and speak, just like Yvonne. Listen well, Joseph—you can see, you can hear, you can understand everything you feel, you like what you eat, you like fine clothes, you are loved by me and your father. We love you just as you are."
Sniffling, whimpering, he listened to his mother's voice. She spoke with certainty; he emitted only moans. His mother said what needed saying and that was all; then she returned to her work while he continued to cry.
The decision they had reached that day was carved forever into his mind. He was only three years old, but already he was reaching for the only peace he could see: the fact that he was alive and, more than that, accepted for who he was.
A mortal anxiety marked that day in Joseph Meehan's life: that choice, that moment, remained imprinted on him forever. The comfort came to him as it comes to a child; that awkward body was still his, but stirred by his mother's love, he looked at his own limbs and in the end Joseph Meehan liked himself.
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Cerebral Palsy
Brain damage or those affected by cerebral palsy
People (children, adolescents, adults) whose brains (or part of them) were damaged while they were in the womb, at the moment of birth, during a contagious illness, or following an accident in their early years of life.
People with cerebral palsy walk poorly or not at all. They may have normal intelligence, but they may also have associated problems with intellect, senses, or personality: intellectual disability, deafness, vision problems, behavioral disturbances.
In this issue we speak of people with cerebral palsy without intellectual disability. We do not claim to exhaust all the problems these people encounter and, with them, their families. This is only a modest contribution toward understanding their suffering and their hope, so that we might comprehend them better and help them more effectively.
Through a few accounts, we have tried to glimpse the difficulties of their lives and the supports they can find in those who meet them or wish to be near them; to understand the daily struggle of their parents and family members; to offer some practical information.
Above all, we have tried to open a door onto the lives of some people who carry on their shoulders a condition very difficult and hard to bear day after day.
It is for us to learn and to position ourselves with gentleness and discretion at their side, so they do not feel too alone.