Imbecile, Idiot, Cretin, Funny-Looking Kid

14866775264_dfcefee472_hIdiot, cretin, feeble-minded, moron, mongoloid, retarded, funny-looking kid: all accepted medical terms at different times in history. More recently, the accepted terms are mental retardation, intellectual, or developmental disabilities. People in pediatrics sometimes use FLK for “funny looking kid” to describe a baby or toddler whose face and head “just don’t look right,” but who don’t have an identifiable genetic disorder. I remember the first time I encountered FLK on a child’s medical chart in nursing school. I was shocked when my nursing instructor told me what it stood for. I was even more shocked that she didn’t find the term offensive. FLK seems to be a throwback to phrenology—that pseudoscience of belief that low foreheads and bumps on the skull can foretell the criminal and devious propensities of individuals.

I had relatives with mental illness and mental retardation. My father’s father and brother were tucked far away in the southern Appalachians of Tennessee: our family’s living skeletons in the closet. I was told that my Uncle Charles was retarded, and that my grandmother was convinced it was because she’d fallen down a flight of stairs when she was pregnant. My maternal great-grandmother raised Uncle Charles on her cotton plantation in rural Georgia, so Charles had a thick Southern drawl and was the most openly racist of any of my relatives. He also had a serious speech impediment, talking as if he had a partially paralyzed mouth. He laughed loudly at his own jokes, startling me by suddenly reaching over and tickling me under the chin or slapping me on the arm. As a child he frightened me; as a young adult he embarrassed me. By then he lived with my grandmother and drove a delivery truck for a cousin’s florist. With savant-like abilities in math, he had been tested at Emory hospital at age ten and assigned an IQ of seventy. He was considered feeble-minded, trainable, and partially educable.

In my childhood, we went to my grandmother’s house in Tennessee only at Easter, as if this were part of our family’s annual pilgrimage of penance, death, and resurrection. Grandmother’s house smelled of sick-sweet Easter lilies, slimy collard greens, and Cimmerian dust from the dirt-floor basement’s coal-piles. My grandfather had a mask-like face and lay in a tall four-posted bed staring at the ceiling. He talked infrequently and when he did, it was in staccato monosyllables. Poorly controlled diabetes and bipolar disorder had left him disabled. He frightened me more than Uncle Charles did. Grandfather was a lawyer but had lost his temper in court so many times he was relegated to library legal research. After he lost that job in the Great Depression, he spent his days playing chess at the YMCA, while my loquacious grandmother sold World Books door-to-door. This was the oft-repeated family story.

Southerners are often stereotyped as inbred imbeciles. My Northern-born mother would tell me stories of my father’s family when he wasn’t around—about the mental retardation and mental illness that my father had been able to transcend by escaping to go to graduate school in New York City. Once there, my father was required to take speech therapy to get rid of his speech impediment: his Southern twang. Both of my parents continuously corrected my speech, determined to prevent me from developing a marked Southern accent. My mother examined the official IQ and academic test scores of all four of her children. With every “ya’ll” that slipped out and every “B” obtained, I felt increasingly marked by the Southern blight. It wasn’t until much later in life, while caring for my elderly mother dying of cancer, that she informed me I was related to Varina Davis, First Lady of the Confederate States of America. My paternal great-great grandmother from the Georgia cotton plantation was Varina’s first cousin or something of the sort. I have not found an adequate place for that fact in my history.

The Shape of the Eye

Subtitled: Down Syndrome, Family, and the Stories We Inherit, by George Estreich (Southern Methodist University Press, 2011) is a memoir of one father’s struggle to care for, understand, and love his daughter Laura who is born with Down Syndrome. But it is so much more than that. Abraham Verghese states that Estreich’s book “…will become a part of the canon of narratives that are studied and taught in medical humanities courses.” An audacious statement—and the notion of a “canon of narratives’ somehow makes me cringe with its connotation of dogma—but The Shape of the Eye does stand out in the growing crowd of medical memoirs.

When I received a copy of The Shape of the Eye a week ago, I was finishing reading The World I Live In by Helen Keller, and so was already deep into the world of stigma, disability, and language. I live on a steady diet of books and seldom ever regress to my adolescent tendency to devour books when they are delicious. But I read The Shape of the Eye in one long luxurious sitting. It is not like when I stayed up all night reading The Lord of the Flies when I was twelve—under the bed covers with a flashlight. I somehow dozed through the part where Piggy gets hurled to his death. I thought my classmates were making it up during class discussion. Instead, I read The Shape of the Eye during the day, fully awake and caffeinated, and I somehow simultaneously devoured and savored the book. It is impossible to simply devour poetry, and this book is written through a poet’s eye. Estreich’s first book is Textbook Illustrations of the Human Body (Cloudbank Books, 2004), a powerful collection of poetry.

What I like most about The Shape of the Eye is that Estriech manages to weave the main narrative of Laura’s birth, heart surgery and other struggles to live, with his own identities—Japanese mother, Jewish father, stay-at-home father, husband, writer/poet, builder of furniture and other home improvement projects. But all of these intertwined stories are teased apart in places—like the brainy bespectacled Piggy—revealing the science and history behind Down Syndrome. Estreich is also a new and improved version of the scientist, bringing both wry humor and a poet’s exquisite sensitivity to the meaning and metaphor within ‘hard facts.’. A lasting image I have from this book is his description of a pediatric heart surgery parent education pamphlet complete with a diapered anatomically drawn heart. I’ve seen those pamphlets and I’ve used some with patients even though I knew they were ludicrous. The things we do in the service of health care… As I read, I kept thinking of the work of the Australian medical sociologist Deborah Lupton (Medicine as Culture) and her discourse analysis of health education messages. In The Shape of the Eye Estriech essentially ‘does’ discourse analysis—Mongoloid Idiocy, the Simian Crease, Mental Retardation, etc—but in a nonacademic and much more accessible way.

As an academic, I can see Verghese’s point about how The Shape of the Eye is destined to be studied in medical humanities courses. And in disability studies. And in psych/mental health. And in special education.  And in all our other strange academic divisions. But mostly I see The Shape of the Eye being savored—like Estreich does for Laura as a person—just for itself.

Postscript: I had the pleasure today of attending George Estreich’s reading of The Shape of the Eye at Elliott Bay Book Company here in Seattle. As you can imagine from reading any of Estreich’s writing, in person he is witty, wry and humble, and just a pleasure to be around—one of those people who gives energy and doesn’t suck it out from the world around him. As was fitting for today, the tenth anniversary of 9/11, he read one of his poems echoing images of post-9/11 Manhattan. But one of my favorite of his poems in Textbook Illustrations of the Human Body is“Codes.” Referring to an interaction with his mother (also a writer), he writes:

“But a life of writing/is not necessarily happy.

Be careful, she says. Chores can interfere with your work.

Our truest signatures/ are endless, and in code.” (p.13)