Today's post is from Suzanne Kamata, editor of Love You to Pieces: Creative Writers on Raising a Child with Special Needs. Kamata is fiction editor at the online magazine Literary Mama, and her work has appeared in Utne Reader; Brain, Child; Literary Mama; and It's a Girl: Women Writers on Raising Daughters. Her novel Losing Kei was published earlier this year by Leapfrog Press.
I'm the kind of person who looks to literature to make sense of life, so when I learned that my daughter was deaf and had cerebral palsy, I sobbed for a while and then I logged onto Amazon.com. I was looking for deep and sustaining stories to guide me on the long path ahead, and while I found many cheery volumes offering hope and inspiration, that wasn't exactly what I wanted. I needed to know that others had felt the same kind of pain, fear, and anger that I was feeling, and I wanted a better idea of how my daughter's disability would affect my marriage, my son, my work, and other aspects of our lives. The best novels, short stories, and memoirs can pull us into the lives of their characters and provide a deeper understanding of others, while poetry can distill and illuminate moments that longer essays gloss over.
I didn't find as many books as I'd hoped, and I wondered why. According to the March of Dimes Global Report on Birth Defects, every year 8 million babies worldwide are born with genetic birth defects. Hundreds of thousands more are born with serious birth defects of post-conception origin. So where were all the novels about parenting a child with cerebral palsy? Or a deaf child? Or one with muscular dystrophy or Down syndrome? Could it be that those in the trenches were too busy to write? After all, parenting a child with disabilities takes a lot of time - a lifetime. Some of us have to help our children move from room to room, from wheelchair to toilet, from house to hospital or therapy center. Some of our children cannot be left alone, or cannot live unsupervised even as adults.
Not so long ago, it was common, even recommended to institutionalize such children. The son of the great American playwright Arthur Miller, who was born with Down syndrome, has spent his life in an institution, but Miller never wrote about him, presumably because he was ashamed. In 1950, Nobel laureate Pearl S. Buck wrote The Child Who Never Grew, one of the first memoirs on parenting a developmentally disabled child. Her daughter Carol had been born nearly thirty years before, but Buck kept her a secret until this book. This groundbreaking work encouraged others, such as Madame Charles de Gaulle and Rose Kennedy, to speak out about their retarded children for the first time, but it is important to note that Carol spent her life in a nursing home.
More recent stories, "Idiots First" published by Bernard Malamud in 1961, and "Average Waves in Unprotected Water" by Ann Tyler, published in 1977, are about sending disabled children away. Hidden away behind walls as the shame and burden of society, perhaps silenced with drugs, who knows what kind of lives these children –and their caregivers - led?
It also occurred to me that in the past, children with disabilities didn't live quite as long as they do now. Twenty years ago, my daughter who was born at 26 weeks gestation, weighing one and a half pounds, probably wouldn't have survived much beyond her first days. And thanks to antibiotics, children born with weak respiratory systems can now survive pneumonias that were previously fatal.
I started writing short stories and essays about my own experiences as the American mother of a disabled daughter in rural Japan. Little by little, I also began collecting stories and poems by other writers who had found the lives of the families with special needs children worthy of literature. In the end I had enough material for a book, Love You to Pieces: Creative Writers on Raising a Child with Special Needs, which I think presents an honest, artful, and rare view of the lives of families like mine.
As I write this, newspaper headlines blare the latest in stem-cell research and suggest a future eradicated of imperfect children; the debate on abortion rages on. Deaf activists warn that cochlear implants in children (chosen by hearing parents) threaten their culture. In the Netherlands, lawmakers have given the green light to child euthanasia for those deemed terminally ill and in great pain. In 2007, the American College of Obstetricians and Gynecologists recommended that all pregnant women, not just those over thirty-five, be offered screening to determine whether their child has Down syndrome, a practice that implicitly encourages the abortion of fetuses who test positive. It is unlikely that any of these issues will be resolved quickly and cleanly; there will always be a need for more information, thought, and discussion. In the meantime, literature eases loneliness and helps us understand and empathize with those unlike ourselves. In the midst of a heated public discourse, it is my hope that this book will lead to both conversation and to quiet contemplation.
You might also be interested in reading Suzanne Kamata's blog, Gajin Mama; an interview with her at Mother Words: Mothers Who Write; or Clare Dunsford's post about raising a child with Fragile X Syndrome.