by Kate Tuttle
“It’s impossible to hate anyone whose story you know,” the nonagenarian mother of a transgendered woman activist tells Andrew Solomon toward the end of this big, big-hearted book. Narrating the stories of hundreds of families in which children and their parents must struggle with identity — whether due to disability or difference of other kinds — Solomon’s project boils down to this: with stories come understanding, empathy, and respect.
Anyone who has children knows that they continually surprise us, beginning even before their birth. Many expect their offspring to resemble themselves, or at least to be amenable to molding; actual babies typically disabuse their parents of that notion. As Solomon says, parenthood involves “a permanent relationship with a stranger” — not that we can’t come to know our children very deeply, but in the end, they are separate, individual, themselves.
In a dozen chapters with titles like “Dwarf’’ and “Schizophrenia,’’ Solomon’s book details the specific challenges some families face to the idea of a shared identity; their children are deaf or disabled, have Down syndrome or autism, find themselves nearly alone in their gender identity. Unlike families in which identity is vertically passed through generations — Catholic, Jewish, Greek — here the child will belong, by accident of birth, to a horizontal identity group, one composed of people who share her or his difference.
Solomon, who is gay, looks at his own parents’ attempts to “fix” him in the context of identity movements that grew out of resistance to such cures; if there’s anything in common among the disparate experiences of being gay, or blind, or a person with Down syndrome, it’s “having a selfhood that others perceive as undesirable.”
Solomon writes of deaf children born to hearing parents who insisted they learn to read lips and speak orally, hoping to integrate them into the hearing world but depriving them of their native language, sign; he writes, too, of a later generation of children born deaf who are happy with the cochlear implants that allow them some hearing. Conflict over the use of implants, he argues, “is really a holding mechanism for a larger debate about assimilation versus alienation,” an argument in which one side welcomes medical improvement and the other warns against cultural annihilation.
The distinction between an illness and an identity varies greatly depending on who’s making the distinction, and for many of the people Solomon writes about here, the truth is “that everyone has a defect, that everyone has an identity, and that they are often one and the same.” The book includes a chapter on musical prodigies, subtly demonstrating how even enormous gifts come linked with significant deficits. “Genius is an abnormality, too,” Temple Grandin tells Solomon.
The role of science and medicine is understandably ambiguous, and Solomon deftly interweaves individual families’ tales with wider meditations on genetic testing, abortion, and the heroic measures undertaken to save premature babies who grow up to face multiple disabilities. Technology has improved the lives of many marginalized communities — several of the people with autism Solomon profiled have found community online that eludes them in the physical world — while at the same time it has challenged the very future of others (one deaf man told Solomon that he feels “a sense of impending extinction”).
The book’s sheer size can seem daunting, but Solomon is a storyteller of great intimacy and ease. It’s impossible not to be charmed by some of these voices (for example, the young boy who, when told he has Down syndrome, tells his father, “I find that a little hard to believe”), and haunted by others (especially in the chapter about children born of rape, one whose mother says, “[h]alf of her genes are evil”). He approaches each family’s story thoughtfully, respectfully; his care for their individual and collective dignity is palpable.
The vast majority of parents Solomon profiled, even those whose children’s conditions mean they will never see, or walk, or talk, come to feel “a contentment more cherished than one untempered by suffering.” Above all, they feel a deeply specific love for their particular children. Bringing together their voices, Solomon creates something of enduring warmth and beauty: a quilt, a choir.