Sunday, November 06, 2011

Insights for Parents of Disabled Kids from Nobel Laureate Kenzaburo Oe

Kenzaburo Oe is a Japanese writer made famous in 1994 for winning the Nobel Prize in literature for work that “with poetic force creates an imagined world, where life and myth condense to form a disconcerting picture of the human predicament today.”

He is also known as something else: the father of a son with serious disabilities, including autism.

That he could make such critically-acclaimed, universal art inspired by his life experience—a number of his works, like the novel A Personal Matter, confronts the issue of having a seriously disabled child—interests me. Reading his work, learning about his biography, I want to know: How does he fashion a life of meaning from these circumstances? Where does he find the stamina to carry on as a parent every day and to also delve so deeply into these experiences? Apart from his writings, what is his attitude to parenting, and to life? What can others learn from him?

These are big questions for a blog post and you will find only the beginnings of answers here. But I ask these questions because I see committed parents of kids with autism and other special needs struggling with the demands of their devotion. It takes so much time, effort and resources to set up services. Parents need to monitor the quality of those services, track results, and make adjustments. They have to advocate with government agencies and other service providers to obtain more effective, different or additional services as circumstances change. It takes time to manage behavior plans and individualized education plans. And that’s in addition to going to work, paying the bills, managing a household, caring for others in the family. For many (depending on where they are in the autism journey), these considerations can limit thoughts parents may have about other aspects of life, such as participating in community activities and religious life. Or simply making time to have fun.

And yet, given all this, it is natural for parents to ask themselves, time and again: Can’t we be doing more?

The song of the water rail

I was curious to know more about Kenzaburo Oe and when I learned he was speaking at Tufts University on November 3, I went to see him. What I learned was both basic and inspiring. At 74, Oe is a writer, a political activist, as a husband and a father who remains on high alert for moments of meaning. He described his political activism to close nuclear power plants in Japan after the Fukushima disaster, for example.

When it comes to his disabled son Hikari, the moments of meaning he experiences give him both joy and strength. He draws sustenance from his son, both from Hikari’s achievements and his individuality as he has learned to express it.

Oe recounted how his son (Hikari means “light” in Japanese) did not speak until he was six years old. Hikari’s parents provided tapes of song birds, narrated by a radio actor. A bird would sing, and the actor would identify it. Tweet. “This is a sparrow.” Warble. “This is a nightingale.” And more. Hikari would listen to these tapes for hours. And his parents could tell by watching him that he was listening, but his reactions did not involve intelligible speech.

One summer when Hikari was six, Oe and his family spent time at a country cottage. “I was walking with my son on my shoulder,” he said. “Always, he was silent. Then some bird, a water rail, made a sound.

“My son, he says, ‘This is the water rail’ in the accent of the radio announcer.”
Oe continued: “I couldn’t believe that I heard my son speak.” But it soon became clear that his son could name that bird’s song and others. They continued listening to the bird song tapes for one year, then began listening to classical music. Mozart, Chopin, Bach. “He was charmed by the music,” Oe said of his son. “He abandoned listening to the old [bird song] tapes.”

Then when the radio played in their home, Hikari began to identify the composers. He would say, “It’s Bach,” or “It’s Mozart.” Over time, Hikari began to study piano, but his physical disabilities prevented him from manipulating the keys. His study of music continued, however, and he eventually began to create his own compositions which were recorded on CDs.

Encountering Oe from a distance among hundreds of people in a university auditorium, it was clear that Hikari’s disability played a central role in the family’s life together, and in his work as a writer. (Oe chronicles this story in A Healing Family, a collection of essays about his son’s role in his family which includes his wife and Hikari’s two younger siblings.)

Two aspects of Oe’s humanity emerge:

First, Oe celebrates the moments of joy in the life of his son and his family. It’s not that he pushes aside life’s difficulties. If you read A Personal Matter, you witness doctors advising new parents of a child born with brain damage that their infant should be allowed to die—an experience which echoes the author’s own. When you hear Oe in person, it is clear the pride he takes in his son’s achievements in spite of his challenges.

Second, Oe appreciates the person that his son, now 48 years old, has become. Oe recognizes the times when his son has asserted his own identity. Such a moment occurred when Hikari was still a teenager. Oe said there came a day when Hikari told his mother and father to stop using a childhood nickname, Pooh, and to call him by his real name instead. This moment of personal advocacy must have been a memorable event for Oe to recall it three decades later.

Oe’s his alertness to meaningful moments in his son’s life includes not just the happy achievements. As Oe noted in his Nobel lecture, he found his son’s music also captured deep feelings of sorrow:

“My mentally handicapped son Hikari was awakened by the voices of birds to the music of Bach and Mozart, eventually composing his own works. The little pieces that he first composed were full of fresh splendor and delight. They seemed like dew glittering on grass leaves. … As Hikari went on to compose more works, I could not but hear in his music also ‘the voice of a crying and dark soul’. Mentally handicapped as he was, his strenuous effort furnished his act of composing or his ‘habit of life’ with the growth of compositional techniques and a deepening of his conception. That in turn enabled him to discover in the depth of his heart a mass of dark sorrow which he had hitherto been unable to identify with words.”

All of this is to say that parents of kids with disabilities can learn something from Kenzaburo Oe’s family experience: As we continue on our quest to make the best lives we can for our children, we can take stock along the way. Be open to moments of meaning. Be alive to the glimpses of achievement. And be alert to the people that our children become, their personal expressions of individuality. There can be moments of joy in the act of discovering more about these people we love, even when there is sadness in their hearts. We can find sustenance in their meaningful acts of expression.

“Joy” versus “happiness”

On my drive home after the lecture, I heard more about this concept from the Israeli novelist and writer Amos Oz, who was the subject on a recent segment of the public radio show On Point. The interviewer asked Oz whether he believed different cultures around the world have different conceptions of happiness. Oz asserted that human emotions and experiences are universal to the human condition, and added:

“I don’t believe in everlasting happiness. I believe in joy, in passing joy. In Hebrew, we don’t even have a proper word for ‘happiness.’ The Hebrew word asher, which only translates as happiness, means receiving positive feedback from others. There are six Hebrew words for joy because there are so many kinds of joy, whereas happiness is an abstraction. And everlasting happiness is a nonexistent experience. I believe in passing joys, in coming joys, which come and go and come and disappear. I don’t believe in everlasting happiness, in arriving there and leaning back and enjoying yourself forever.”

Hearing Oz’s answer after Oe’s talk had the effect of witnessing two voices in captivating conversation. For me the experience reframes the questions at the beginning of this post. Should we be doing more for our children? Is it ever enough? Yes and no. But we also need to make room for witnessing moments of meaning. The times when we experience joy with our children should feed us, strengthen us. So that, as we carry on in challenging times, we can be ready for the next moment of joy, however fleeting.

(Photo of Kenzaburo Oe, taken in 2005 by Amao via Wikipedia.)