Far From the Tree: Parents, Children, and the Search for Identity
by Andrew Solomon
Scribner, 976 pages, $37.50
At the most superficial level, raising children is about getting to the next stage: getting them to sleep through the night, to eat solid food, to give up the pacifier, to use the toilet. But what if your child were never potty-trained, could never feed himself, could never be left alone near sharp objects? Or what if he could be left alone near the knives—because he could not walk?
Take Sam, who suffered “an undiagnosable, degenerative neurometabolic disorder.” He had a normal birth, but, writes Andrew Solomon in Far From the Tree: Parents, Children, and the Search for Identity, “things fell off over the next few months. Sam had no appetite, poor muscle tone, and wasn’t reaching normal developmental milestones. . . . Sam would never walk, talk, eat, or hear. He received nutrition via a gastric feeding tube (G-tube), was in a wheelchair, and had a seizure disorder. . . . He suffered from constant reflux and pain.”
Sam’s parents, Ruth and Bill, found joy in his good moments. “Sam loved visual things; he loved being in the water; he loved therapeutic riding.” Sam died at the age of nine, and so did his younger sister, who had a similar condition. Solomon writes that when he praised the care Bill gave, he wrote back, “I think most people I know, if a child had been given to them who is profoundly disabled, would have risen to the occasion. I need to believe that. It’s how I construct a good world.”
Solomon’s stories for the most part confirm Bill’s belief. As Solomon—author of the National Book Award-winning book on depression The Noonday Demon—writes in the introduction, “Most of the families described here have ended up grateful for the experiences they would have done anything to avoid.”
The question of what they would have done to avoid it comes up again and again in Far From the Tree. The parents of children with Down syndrome could have aborted. About 70 percent do.
The ones who do not have very conflicted feelings about whether they would change things. One parent explains, “If I could have David who he is but not have Down syndrome, I would do it in a minute. . . . But the diversity of human beings makes the world a better place, and if everyone with Down syndrome were cured, it would be a real loss.”
What does it mean that children with Down syndrome have the “mental age” of a five-year-old, Solomon asks one mother. “Imagine someone who’s been five years old for ten years. He’s Mr. Helpful around the house; he does all these things that a five-year-old would never be five long enough to learn,” she tells him.
If you gather a whole group of six-year-olds together, they’ll have a much wider range of ability than any single six-year-old. So one might have grown up with professional parents in the city, so he knows about computers. Another grew up in the country and knows all kinds of wild plants and how to find their way around in the woods. If you keep somebody at a six-year-old level for long enough, they’ll expand laterally. That’s what he’s been doing.
Some of the parents of autistic children would like their children to be cured of the difficulties created by their autism, but they recognize the benefits (musical and mathematical abilities, for instance) that often go along with being autistic. But others see any attempt at a “cure” as a way to simply erase those people who are different from the general population. Giving every deaf person cochlear implants, for example, would mean the end of sign language and “deaf culture.”
Solomon champions “neurodiversity,” the controversial idea that autism and other conditions should not be cured. Judy Singer, the Australian sociologist who coined the term, says she “was interested in the liberatory activist aspects of it—to do for people who were neurologically different what feminism and gay rights had done for their constituencies.”
He champions it for a reason. He is homosexual and undertook this project as a way to understand why his parents didn’t do a better job of accepting and nurturing his own “identity.” But when he compares his situation with those of families whose children have a form of dwarfism or were born as a result of rape or are deaf or blind, it feels like an intrusion, if not simple narcissism.
Others have objected to this comparison. In the Wall Street Journal, the psychiatrist Paul McHugh noted that, as the book goes on, Solomon conveniently shoves everything from homosexuality to autism, “transgenderism” to deafness, into a broad category known as “identity,” without making distinctions. He tells many engaging stories, but his own is not one of them.
Still, Solomon reaches some sensible and rather traditional-sounding conclusions. First, he finds that diversity cannot be the highest good. Not only is it important to cure some diseases even at the expense of “neurodiversity,” it is also okay to leave some kinds of diversity behind. With new technologies, “the Deaf will vanish along with many ethnicities, their languages along with many languages.”
He compares the change to his own father’s boyhood culture, in tenements among recent Jewish immigrants from Eastern Europe. “The world to which he was born . . . has vanished. . . . There’s no question that something has been lost. Yet I prefer the prosperous, American way I grew up.”
Second, he notes that for all the griping that many people do about the oppression they experience, there has never been a better time in history to be born with a disability. Not only has science made great strides in improving the lives of those with physical challenges, but our fellow citizens are also taught to be more kind and tolerant than most people in other countries and other centuries.
Third, he quickly realizes how the abortion of babies with abnormalities can affect our views of the lives of people who live with those abnormalities. Solomon does not call for a ban on abortion, but he does insist that “preventing births of any subclass of people devalues them. A society in which fetuses with Down syndrome are routinely aborted clearly believes that DS is a grave misfortune.”
The judicial treatment of filicide among families with disabilities is also slowly undermining our public conception of human dignity. Many parents who murder their children with autism are given probation or extremely light sentences by courts because they are either under “too much stress” or relieving their children of “suffering.” (The language of the euthanasia movement seems to pervade these cases.) In fact, “almost half of parents who kill a disabled child serve no jail time at all.”
Which leads us to the final conclusion Solomon reaches. Throughout the book, he documents how families baptize children with severe disabilities, how faith seems to help them accept their children’s limitations, and how religious communities have provided the kind of support needed by the parents he interviews.
One student, a high school senior living with a kind of dwarfism, has had severe back problems and two hip replacements and lives in constant pain. His father is “a devout Christian who sings in his church every week.” The father tells Solomon: “I believe there’s a God. I believe God doesn’t make junk.”
Icilda Brown, writes Solomon, “seemed more at peace with her son’s condition than almost any other mother I met.” A working-class, single mother of a child with autism, Icilda credits the Jehovah’s Witness community of which she is a member for supporting her. “Our church was the biggest comfort and still is.”
She counsels other parents of children with autism now. “I’ll say, ‘You see my son now. And now see your kid’s running and not talking. That was him. If you give up, your child doesn’t have a chance.’ . . . I looked back, and I said to the Lord, ‘Oh, thank you for bringing me from such a long ways.’”
Solomon does not have a religious conversion himself. But he does make this observation about the child that he eventually has: “I realized that George, who had done nothing more admirable than cry and feed, was richly and permanently human to me, possessed of a soul, and no alteration could change that.”
Naomi Schaefer Riley is the author of ‘Til Faith Do Us Part: How Interfaith Marriage is Transforming America, out this spring from Oxford University Press.