Hikari finds his voice
Last year when Japanese Author Kenzuburo Oe won the Nobel prize for literature, he made an unusual announcement. At the Stockholm awards ceremony, he informed the world that he would not be writing any more novels, at least not for the forseeable future. He has no more reason to write.
In an extended April 16, 1995 interview with the Canadian Broadcasting Corporation's Sunday Morning, Oe detailed his reasons for writing and why he no longer needs to write. Oe sees his writing as a healing process. Thirty-two years ago, when his son was born, Oe and his wife were told that the child had a herniated brain. The parents were told that surgery could be done but that if the child survived he would be severely handicapped. Doctors tried to convince the parents that they should let their son die saying the most they could hope for "was a kind of vegetable existence."
Oe, already depressed about his stagnating career as an author, struggled with the decision, thinking he and his wife must escape from the "monster baby." While considering their options they visited Doctors at Hiroshima who were working with atomic blast victims; some of these physicians suffered themselves from the effects of radiation. They told him about their process of growing from despair to hope. They decided to get the operation for their son Hikiri. Their son survived, he was epileptic, dvelopmentally delayed, visually impaired, with limited physical coordination.
Oe's novels gained new vitality as he attempted to give voice to his son who never learned to speak beyond a few limited words, and as the father spoke of his own challenges. While he says that living with a child with a disability brought suffering to him, he also says that his son taught him invaluable lessons, and gradually the "burden" became a gift. The son gave meaning to the father's life. Kenzoburo Oe went on to reach the pinnacle of his profession and credits his son for this achievement.
But that is not why Oe stopped writing novels. It seems his son has found his own voice. At age six, Kenzuburo Oe's son spoke his first word, identfying the call of a bird. At 32, Hikari still speaks only a few words, still is severly handicapped. Hikari, however, has learned to express himself through music. Hikiri won his own prize last year. A CD of music composed by Hikiri Oe won Japan's top prize for Classical Japanese music. Not bad for "vegetable."
What if Hikari Oe's parents had followed their doctor's advice and let their son die?
Life probably would have been a little easier. There might have been a less suffering but also less joy. Neither father or son would have known what they had missed. And if someone tried to tell the parent who made such a choice choice or the doctor who advocated for it just how rich those lives would have been if they had chosen to such a child alive, no one would have believed it anyway.
Dick Sobsey Abuse & Disability Project 6-102 Education North University of Alberta Edmonton, AB T6G 2G5 CANADA Phone: 403/ 492-3755 Fax: 403/492-1318