I’m sort of compelled to read new memoirs by parents of kids with disabilities, particularly parents of kids with Down syndrome. It’s an unhealthy compulsion, because my intense frustration with most of these memoirs is so evident that Biffle has often asked me to stop reading them. The other day I was mad for some complete other reason, and Biffle said, “Are you reading a memoir?”
I get angry because the memoir writers often spend much of the memoir detailing their misery: here’s how terrible it is to have a child with Down syndrome. This story is at this point so old it’s clichéd, and it’s not functional in the ways I think these parents ultimately want it to be. They end the memoir at a place of love for their child, and they seem to want the reader to feel that love as well, but what the reader more likely feels is some version of, “I'm glad that’s not my kid. But bless their hearts.”
The Shape of the Eye doesn’t do this.
George Estreich certainly acknowledges profoundly mixed feelings when his daughter Laura was born and diagnosed with Down syndrome. For instance, he writes, “I felt that Laura’s life was valuable, that she was a child, a sister and daughter and granddaughter above all, that she might learn and thrive. I also felt that our lives were over, that her birth was a tragedy, and that we were condemned to a half-life of hospitals, acronyms, therapists, and forms” (xiii). So here’s what he does: he acknowledges this emotional place of paradox, and then he launches into a thoughtful reflection (even analysis, although I get that this word doesn’t turn other people on the way it does me) about how he and his family create meaning and love in the midst of a culture that, by and large, doesn’t do particularly well with disabilities, particularly with cognitive ones.
And he discovers that life with Laura is like life with a child: delightful, challenging, hilarious, frustrating. This is not a book about Laura’s birth being a tragedy. It is, as is true for all memoirs, a book about George Estreich, about his growth, his family heritage, his struggles with depression and his expansion into the role of father/writer/activist.
And what I particularly appreciated is that it’s a book about how we understand Down syndrome, how we talk about it. Estreich (like me!) is critical of many of the familiar stories that are out there, and he notes, “Each time I shared the news, I faced the difficulties of narrative” (26) (interestingly, I was making this very point Wednesday in a lunch with another scholar who studies disability). He actually has lots of good points about the importance of narrative—about the problematic descriptions of kids with Down syndrome as “sweet”: he even calls out the “little angels” description that pisses me off so much.
He writes about his own process of beginning to write about Laura. He does some reading—medical and historical—about Down syndrome and discovers that the way it’s described is often nauseatingly bad: unforgivably inaccurate (one fairly recent medical book describes people with Down syndrome as “trainable”) and offensive. He discovers that “What Down syndrome ‘was’ mattered less than the way it was described” (151).
By the time I got to this part of the book, I knew I’d found an ally, somebody who should come hang out with us at the NDSC Convention (come on, George!), and someone I should talk to about my research into prenatal testing.
I’ve gone through this review resisting the urge to offer tons of quotes from the book, but let me end with this one:
If our technologies are to benefit people with Down syndrome, then their lives need to become more real to us. Science can illuminate one part of that reality, and technology can affect it. But only story can convey it (208).
I completely agree.
Alison Piepmeierblog: Baxter Sez
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