On the first page of "Far From the Tree: Parents, Children, and the Search for Identity ," Andrew Solomon writes that "loving our children is a test for the imagination." Over the 976 pages that follow, Solomon profiles the sorts of imaginative tests that most parents never face. The chapter titles include "Deaf," "Dwarfs," "Autism," "Crime," "Transgender." He speaks to parents of musical prodigies, Rwandan mothers who keep the children of their rapists, parents of children with multiple severe disabilities. But as he discovers, "most of the families described here have ended up grateful for experiences they would have done anything to avoid."
Solomon is a superb writer: elegant without fussiness, lyrical without pretense. The families' stories are interwoven with extensive research and bookended by Solomon's quest for identity, first as a gay man seeking his parents' acceptance, and then as a father. As a result, the book transcends both memoir and reportage: Solomon's story sheds light on the families, and theirs on his. What results is the author's "Song of Myself," a book containing multitudes. It is a gorgeous, necessary, ambitious book. But it is also deeply flawed, and its flaws undermine its positive message.
Solomon, despite his affirmative tilt, has an essentially tragic vision. He favors saints, martyrs and stoics: Some of his highest praise is reserved for Sue Klebold, the mother of Dylan Klebold, one of the Columbine shooters. He calls her "eagle-eyed even when the views are bleak," and writes, "Hers was a love as dark and true, as embracing and self-abnegating, as Cordelia's."
He abhors sentimentality, but is often skeptical of happiness. In the chapter on autism, he describes one mom: "I'd met so many families who tried to look on the bright side of horrible situations that I found something bracing in Nancy's brash assertions of misery and disgust, her ability to say that if she'd known what kind of children she was going to have, she wouldn't have had children." It is as if, being a reporter, Solomon imposes a reporter's ethic on his subjects, valuing those who observe their fate as if from the outside, even while wracked on the inside.
I noticed this tendency throughout, but most of all in the chapter on Down syndrome. I have a daughter with Down syndrome, and I've written about her, so it's fair to say my antennae were up. Still, the stories are troubling. The chapter opens with a profile of Emily Perl Kingsley -- activist, mother of Jason (born 1974) and author of the well-known "Welcome to Holland." That "modern fable," as Solomon calls it, has a moral of acceptance: Kingsley explains that expecting a normal child, then having a disabled one, is like booking a trip to Italy, then landing in Holland instead. You learn to appreciate tulips and Rembrandts.
It turns out that her inspirational fable springs from a disappointment that now approaches bitterness. After years of dedicated effort, her son is extraordinarily accomplished, but she refers to his abilities as "trained seal stuff." She says, "You can have tulips and windmills coming out your ears, but you don't ever get to the Uffizi, and that's it." Karen Robards, another high-powered, dedicated and loving mom, says of her adult son: "For David, I'd cure [Down syndrome] in an instant; but for us, I wouldn't exchange these experiences for anything." It's a zero-sum game of happiness: Both parent and child have sacrificed, leaving wisdom tinged with regret.
Angelica Roman-Jimenez is more measured and accepting, but still compares her daughter's birth to 9/11. "I couldn't stop the planes from coming. I couldn't stop my illness [breast cancer] or her condition. You can't stop the future." (Most parents I know don't think their child's arrival was like cancer, let alone a terrorist attack, and are actually OK with the whole Down syndrome thing.)
Part of the book's appeal is the extensive research. The endnotes alone run to 120 pages, longer than "A River Runs Through It." In the Down syndrome chapter, that edifice of fact is more impressive than sound. There are minor errors: the IDEA legislation, which enables children with intellectual disabilities to attend school, passed in 1975, not 1990; a long list of memoirs contains two books that aren't memoirs.
More troublesome, though, are Solomon's assertions about what people with Down syndrome are like. "People with Down syndrome are often warm and sociable, eager to please, and free of cynicism," he writes. "Larger studies indicate that many people with Down syndrome are also stubborn, defiant, aggressive, and sometimes disturbed." But the two studies Solomon cites are equivocal. They emphasize how little is still known, how people with Down syndrome fare well compared with other children with intellectual disabilities. One study notes relatively low rates of true "aggression," like fighting. Higher rates are present only if "disobedient," "argumentative" and "demanding attention" count. Which, to me at least, sounds more spirited than aggressive.
I was curious about all this, so I emailed Solomon's description to Dr. Brian Chicoine. He's the medical director of the Adult Down Syndrome Center in Park Ridge, Ill., and his co-authored book "Mental Wellness in Adults with Down Syndrome" is also cited in Solomon's endnotes. Chicoine emailed back, cautioning against "broad strokes," but saying, "While we do see some people that are aggressive and defiant, those are not terms I would associate with Down syndrome. If one were to drive through the parking lot of the local mall this Sunday while people are scrambling doing last minute shopping, I think you could easily say that aggressiveness and defiance are more common in people without DS than with DS."
There's a great irony about "Far From the Tree": Despite the book's sheer heft, Solomon's writerly gifts are most evident on the smallest scale. He shines in the thumbnail portrait, the apt quotation, the eloquent and balanced sentence. "Schizophrenia cannot be cured with encouragement and love alone," Solomon writes, "but it can be hugely exacerbated by neglect." A child musical prodigy, now grown, tells Solomon, "I understand why my parents turned against me. We all hate what we don't understand." In fact, some of the most memorable quotes come not from parents, but from children -- which left me again at a loss, because in the chapter on Down syndrome, Solomon doesn't talk to a single one. Having heard so much of Emily Perl Kingsley's disappointment, I wanted very much to hear what Jason Kingsley had to say.
One of Solomon's stated goals is to illuminate the complex tension between illness and identity. He writes, "I thought that if gayness, an identity, could grow out of homosexuality, an illness, and Deafness, an identity, could grow out of deafness, an illness, and if dwarfism as an identity could emerge from an apparent disability, then there must be many other categories in this awkward interstitial territory. It was a radicalizing insight. ... Difference unites us." And yet Down syndrome, for Solomon, remains more illness than identity, and so the people who have it are missing. Their group characteristics are enumerated, but their individual voices are silent. Given that Solomon talks to many other affected members of different groups, the absence is conspicuous.
How we talk about disability matters. As Solomon points out, "identity groups ... are gaining acceptance just as medicine threatens to eliminate them." In a time when our definitions of illness are changing as quickly as our ability to cure, treat and predict, we need more than clinical descriptions; we need to know about life on the ground. For this, Solomon's book is a valuable part of the conversation, but it's far from the last word.
-- George Estreich of Corvallis is the author of "The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit," the winner of the 2012 Sarah Winnemucca Award for Creative Nonfiction at the Oregon Book Awards.
Posted originally on December 29th 2012 in The Oregonian