Professor Dick Sobsey is project Director at the Developmental Disabilities
Abuse & Disability Project, University of Alberta, Edmonton, AB.
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 foreseeable 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 disabled. 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 Hikari. Their son survived, he was epileptic, developmentally 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. The father spoke of his personal challenges saying that while that living with a child with a disability brought suffering to him, his son taught him invaluable lessons, and gradually the "burden" became a gift. The son gave meaning to the father's life. Kenzuburo 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, identifying the call of a bird. At 32, Hikari still speaks only a few words, and still is severely disabled. Hikari, however, has learned to express himself through music. Hikari won his own prize last year. A CD of music composed by Hikari Oe won Japan's top prize for Classical Japanese music. Not bad for a "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 less suffering but also less joy. Neither father nor son would have known what they had missed. And if someone tried to tell the parent who made such a choice or the doctor who advocated for it just how rich those lives would have been if they had chosen to keep such a child alive, no one would have believed it anyway.
As a footnote to the above, Kenzaburo Oe, wrote a fictional book, Kojinteki na taike, based on his own life experiences that deals "with his decision about passively "letting his child die," "actively killing the child," or "fighting for his child's life," says Sobsey adding:
According to Oe, the real life decision was made quickly, and he only really thought for a minute of "mercy killing," but in the book, the decision takes much longer for dramatic reasons. In 1977, Oe wrote "I let my instinct have its way and named the boy "Hikari" (Japanese for "Light"). My instinct was right. His existence has since illuminated the dark, deep folds of my consciousness as well as the bright side" (quote translated in Michiko N. Wilson's (1986) The marginal world of Oe Kenzaburo: A study in themes and techniques. Armonk, NY: M.E. Sharpe, Inc., p. 6). In another quote, he says "This child of mine deeply and sharply influences the structure of my flesh and spirit. Therefore, when I write about trees and whales, these words, which embody symbolic meanings, constantly reflect the shadow of the child's existence" (p. 7).
|Sobsey concluded with, "As the father of a child with a disability, these words resonate inside me."|
I feel quite horrified when I stop to think what might have happened had my son Hikari never listened to music: what has become the most essential part of his daily life would not have taken shape within him. Moreover, it might well have been impossible for us, his family, to surmount the many difficulties which have confronted us. I feel this with compelling immediacy as I look back over our past three decades with Hikari, who has live these years with a mental handicap. Hikari was born with an abnormal growth which was soon removed surgically from his head in a difficult operation. But although Hikari's mental retardation gradually became evident thereafter, he continued to grow physically in his cot just like any other healthy infant. His young mother listened frequently at this time to the music of Mozart and Chopin, mainly to shield herself from anxiety over the child. Looking back from the vantage point of the present, it seems that the baby must have listened intently to this music.
Hikari eventually had the good fortune to encounter a piano teacher who gave him the chance to discover the joy to be had from the creation of harmony and melody. One day he showed us his first composition, written in long-tailed notes resembling bean sprouts, and we could but marvel at this astonishing development.
It was after several performances of his music by gifted friends that we began to understand exactly what musical composition meant to Hikari. Had he not composed, he would surely never have been able at any time in his life to convey the rich, profound, crystalline and radiant message contained in this music. For our part, had Hikari not composed, we would have never realized, nor would we have been able even to imagine, that he possessed this sensibility. The scope of what we might have gained from this world and understood of it would have been significantly narrowed. I feel we would have missed gaining an insight into some of the most important and humble aspects of the meaning of human life.
Hikari continues to travel every day to the welfare institute and spend most of his remaining time listening to music. I used sometimes to think that there was no accumulation of historical time within his life, for never have I heard him express in words his memories of the past. But it is quite clear from Hikari's compositions that history lives within him: one piece expresses his feelings to the doctor whom he most loved and respected, another piece alludes to parting from a handicapped friend. Yet other pieces allude to the sunlight which bathed him and his brother and sister in a mountain cottage in the summer and to the falling snow.
Hikari's range of expression is now extending beyond our home. It is moving towards unexpected and distinctive quarters, and is finding its resonance over an ever wider area. We are once again experiencing the joy of a profound mystery.
3 April 1993.
|Sleeve notes from Hikari Oe's CD Music of Hikari Oe:|
I recall once when his mother was helping his master the use of conjunctions in the Japanese language, he found it difficult to select the appropriate word in a particular sentence. I was present at the time and suddenly thought of illustrating what his mother was trying to explain in musical terms by means of an analogous harmonic progression. He immediately understood the point and was overjoyed at having done so. This was a very important discovery for me . . . I recall the time I first began giving him lessons in music . . . what a wonderful experience it is . . . to communicate with him in this way.
I . . . began teaching Hikari the piano because I felt it would be very enjoyable for him, as a primary school pupil who loved listening to music, to be able to perform a few simple pieces. It was great fun for him as a child gradually to be able to get the five fingers of each hand working separately to produce a proper sound on the piano. But the more he became able to do this, the more interesting it became for him to practise not the studies I had given him but music of his own making.
Our most enjoyable lessons used to involve me playing a melody which he would than continue, or working together to harmonize a particular tune. At such times it often happened that we would come up with a particularly attractive melody or harmony which it seemed a great pity to lose, although it often happened that Hikari remembered such interesting passages and repeated them later. I then began teaching him to write music on manuscript paper and aural dictation.
It was from about this time that Hikari began to show enormous interest in his lessons. Whenever I arrived at the doorstep, he would be waiting for me in the hallway with an alarm clock signalling the time scheduled for the start of the lessons and a pair of slippers for me . . . I wondered what I should do to satisfy all his expectations of me. I decided to abandon music in the manner in which I had spent most of my life studying it and instead begin exploring together with Hikari a new sound world which would enable me to enter into a true dialogue with Hikari . . . Musical fragments were sometimes taken from the work of Mozart and Bach, but there was a gradual increase in the number of musical ideas that Hikari had conceived n his own. These marked the beginning of Hikari's activity as a composer. His facial expression began to brim with self-confidence; for me this was a highly moving period. [Addendum provided by Dick Sobsey; Copy Editor: Cheryl Eckstein, CHN]
"Hikari Finds His Voice" Produced by Compassionate Healthcare Network (CHN) - July 1995
Copyright © 1995
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