I wrote the article–many articles and a book, in fact–to describe what it was like to have a child who never walked or talked, who would be in diapers all of his days, whose care precluded any semblance of normal family life for the rest of us. I became a writer and a family advocate as a response to the anti-institutional bias in this country and the tendency to canonize the handicapped and the families–most significantly the mothers–who care for them at home. My point was this: there are good facilities for handicapped children in this country. There should be more. Choosing to place your special-needs child in a group home, a residential facility or an “institution” does not mean that you are a bad mother.
Zachariah had Canavan’s disease, which causes destruction of the myelin, the insulation around nerve cells. Although one doctor had written in the medical record when Zach was 3 years old, “I do not expect this little boy to live out the year,” Zach survived until he was 16. He was profoundly retarded, his days spent in wheelchairs and beds, with feeding tubes that made him gag, and eventually a body so cruelly curved by scoliosis that his back made the letter S. He also had huge blue eyes and a smile to beat the band.
He died on a Memorial Day weekend, when all the peonies were in bloom, and his funeral was held in the courtyard of the institution outside of Des Moines that had been his home for the last decade of his life. At the service we played a recording of Hazel Dickens singing “Fly Away,” and then someone let loose a dove. I wrote a eulogy not only to say goodbye to my son, who was finally free, but to thank all the child-care workers, the therapists and nurses who had cared for and loved him.
There was a time when I thought of Zachariah the first thing when I awoke in the morning and the last thing before I drifted off to sleep. I believed I would forever first define myself as being his mother. But eventually I divorced, remarried, had a new job, stepchildren; my daughter went off to college, and I stopped speaking as a family advocate.
Still, I get the phone calls. I hear the women, sad and hesitant across the wires. Sometimes a woman calls, introduces herself and bursts into sobs. “I read an article you once wrote… someone gave me your book,” she says. Once I got a call from a woman in Texas who found an old magazine piece I had written about residential placement. She telephoned from a coin laundry; her retarded daughter, Maria, was crying and pounding on the washers in the background. The woman was desperate: “How far away is Iowa? Do you think I could come and talk to you?” Many ask after Zachariah, unaware that he has died.
The phone call last week from a woman in Colorado made me sit down and write about this once again. She has a 3-year-old boy with a rare syndrome which includes autism. He has physical mobility but no language or cognition (“If he were in a wheelchair,” she said, “that actually would be easier.” Her comment reminded me how mothers of handicapped children compare their children’s disabilities.) She tells me how dysfunctional her family life is, how the special-education experts coming to her home are always devising new programs, how little attention she is able to give to her new baby daughter. Her son Andrew has severe eating problems which will soon necessitate tubal feedings. He wakes in the morning and spreads his feces along his bedroom wall. She would like to place her son in a facility, but social services offered only foster care, which would mean she would give up parental custody. “I’m not an unfit mother,” she protests. “If our family can’t continue to care for Andrew, how can a foster family?”
Social services encourages her to keep Andrew at home. They talk about “least restrictive environment” and “inclusion.” Most of the terms that deal with the severely impaired have been invented by special-education professionals who have never lived with a child like Zachariah or Maria or Andrew.
Years ago, we did put our retarded children “away”–we knew so little and were ashamed. Parents of Down’s syndrome infants were advised to put them in institutions and go on with their lives. Then we learned the horror stories of institutional warehousing that resulted from this kind of ignorant social policy. But the progressive backlash that promotes the “home” as some kind of sacred shrine is also hurtfull and wrong.
I said it 15 years ago, but it needs saying again: the view that the “home” is the best place for every child has dangerous ramifications. Government funds are cut for human services under the guise of anti-institutionalization. Well-meaning reformers who tell us how terrible the institutions are should be wary lest they become unwilling accomplices to politicians who only want to walk a tight fiscal line. It takes a lot of money to run residential facilities. No politician is going to say he’s against caring for the handicapped, but he can talk in sanctimonious terms about efforts to preserve the family unit, about families remaining independent and self-sufficient. Translated, this means, “You got your troubles, I got mine.”
Each child is different. Each family is different. The hard truth is that the home is not the best place for every child. The harder truth is that even if it were, it might not be the best place for everyone else.
