A Personal Matter

by Kenzaburo Oe, Winner of the 1994 Nobel Prize for Literature

From Amazon: "Oe’s most important novel, A Personal Matter, has been called by The New York Times “close to a perfect novel.” In A Personal Matter, Oe has chosen a difficult, complex though universal subject: how does one face and react to the birth of an abnormal child? Bird, the protagonist, is a young man of 27 with antisocial tendencies who more than once in his life, when confronted with a critical problem, has “cast himself adrift on a sea of whisky like a besotted Robinson Crusoe.” But he has never faced a crisis as personal or grave as the prospect of life imprisonment in the cage of his newborn infant-monster. Should he keep it? Dare he kill it? Before he makes his final decision, Bird’s entire past seems to rise up before him, revealing itself to be a nightmare of self-deceit. The relentless honesty with which Oe portrays his hero — or antihero — makes Bird one of the most unforgettable characters in recent fiction."

From The Nicole Kline Experience: "Kenzaburo Oe’s novel A Personal Matter is one that is both private and traumatic. It details the life of Bird, a 27-year-old college dropout whose wife has just given birth to a deformed son. The child has a brain hernia, which means that even if he does live, he will most likely be a vegetable all his life. It would appear to Bird that the answer is obvious – let the child die, as opposed to dealing with the shame of having given birth to a monster. This sentiment is reflected in the view of his in-laws as well as the doctors at the hospital at which the baby is born. But then a divide occurs at the second, specialist hospital – those doctors want to keep the baby alive, and want to go so far as to perform an operation. Bird struggles with himself, trying to decide what to do – does he let the baby die? Or allow it to live, knowing it may never lead a normal life?"

Lost Lullaby: Deborah Alecson 1995

From UC Press Material:
Lost Lullaby makes one think the unthinkable: how a loving parent can pray for the death of her child. It is Deborah Alecson's story of her daughter, Andrea, who was born after a full-term, uneventful pregnancy, weighing 7 pounds 11 ounces, perfectly formed and exquisitely featured. But an inexplicable accident at birth left her with massive and irreversible brain damage. On a vitality scale of one to ten, her initial reading was one. And so begins Deborah Alecson's heart-rending struggle to come to terms with two desperately conflicting and powerful emotions: her desire to nurture and love Andrea, and her desire to do everything in her power to bring about her death.
Told in a mother's voice, with a simplicity and directness that heighten the intensity of the drama that unfolds, Lost Lullaby reaffirms the human dimension of what is too often an abstract and purely theoretical discussion. During the two months that Andrea spent in the Infant Intensive Care Unit, Ms. Alecson spoke with lawyers, doctors, and ethicists in an effort to understand the legal, medical and ethical implications of her plight. She recounts those discussions and describes legal cases that have a direct bearing on her own situation. Her battle--both in coming to the agonizing decision to let her child die and in convincing the medical and legal establishments to respect that decision--will engender empathy for the plight of many families, and an awareness of the need to use medical technology with restraint. It is a must-read for everyone who cares about how we make life-and-death decisions on these new medical, legal, and moral frontiers.

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