Academic journal article The Hastings Center Report

What Child Is This?

Academic journal article The Hastings Center Report

What Child Is This?

Article excerpt

A childhood memory: It is a Sunday afternoon in late summer, shortly after my sixth birthday. Downstairs, my mother is entertaining a visitor; the sound of their voices drifts up through the open window. I am alone in the room I share with my brother and sister, and I have run out of things to do. I walk quietly down the hallway and enter my mama and papa's bedroom, a dim and ordered space where the shades have been drawn against the heat.

The crib stands at the foot of the bed. Through the wooden bars I see that Carla's eyes are open, so I speak to her. She stares at me solemnly, and I think that if she could, she would reach for me. The curls feathering her head are damp with sweat and her little shirt is rumpled, so I carefully lower the rail and slide my arm under her back, lifting her off the mattress. Holding her horizontal, I slowly carry her from the room, turning sideways as I take her through the door. When we reach the staircase at the end of the hall I grope with my foot for the step. I keep my eyes on her face and she returns the gaze, seemingly intent on what I murmur to her as we make our descent. Here is where the stairs turn, so we have to be extra careful. We'll stay close to the wall and my foot will tell me where the next step is. You're not so heavy, are you, my baby? You want your mama, don't you. Another step, and then another.

My sandal touches the linoleum at the foot of the stairs. The murmur of voices is louder now, punctuated by my mother's laughter. Again I turn sideways to maneuver us through the doors and we pass through the empty kitchen and dining room. As we appear in the archway to the living room my mother sees us and stiffens, breaking off in mid-sentence, coffee cup lowered halfway to the saucer. Then she smiles. "Oh, was Carla awake? Aren't you a good big sister to bring her downstairs. Now come to me slowly. Hold on tight. Be very careful--that's right." As soon as I am in range she scoops the baby out of my arms and cradles her protectively. She smiles still, but I know I have done something wrong.

In the 1950s, not much could be done about hydrocephaly, a neural tube disorder in which spinal fluid builds up in the brain, exerting pressure that interferes with cerebral function. The intracranial pressure caused by Carla's hydrocephaly was so severe that she could not lift her head, turn over, sit up, speak, or grasp objects. I do not remember that she ever smiled. She lacked the ability to swallow and had to be fed through a nasogastric tube, which my mother learned how to manipulate at home. Carla's appearance could deceive a casual observer into thinking she was much like any other baby, though a closer look revealed that her head was somewhat larger than normal. She had the translucent complexion that so often accompanies red hair, and a remarkably fine pair of blue eyes. I believed she was beautiful, and the snapshots that have survived give me no reason to change my opinion.

Her physicians predicted that she would live for many years, warning that once she grew past infancy it would be too difficult for my mother to care for her and she would need to be institutionalized. It never came to that. When she was eighteen months old, the part of the brain that regulated her bodily temperature succumbed to the pressure and ceased to function. In May 1954, two months before my seventh birthday, Carla died of a high fever.

Starting from my memories of Carla, I want to explore a one-sided practice that often takes place in families and other structures of intimacy where there is a responsibility to care for someone who is seriously ill or disabled. It is the practice of holding the individual in personhood by constructing or maintaining a personal identity for her when she cannot, or can no longer, do it for herself. I then want to press three questions. First, how can we make sense of the notion of conferring a personal identity on someone who can contribute almost nothing to her own personhood? …

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