Tuesday, September 6, 2011

Why pictures matter






















George Estreich is a poet and college instructor who became a stay-at-home Dad 15 years ago. The Shape of the Eye (above) is his elegant, thoughtful memoir about stories: the birth of his daughter Laura, who has Down syndrome; his own family history, which includes a mother who watched Tokyo's  firebombing as a teenager and a father who dies of cancer; and the cultural narrative of Down syndrome that evolved from John Langdon Down's description of a new race of 'Mongolian idiots.' For BLOOM, George writes about how popular images reflect the two opposing cultural views of Down syndrome: those of 'person' and 'defect.' 

Thanks George! Louise

Why pictures matter
By George Estreich

The image, and the website I found it on, is long gone from the Internet – taken down, perhaps, out of belated respect for patient privacy. But the teenager with Down syndrome, the bruised, disoriented adolescent photographed in a hospital exam room, used to have his own URL. A dewdrop, on the endless silk of the Web. As I began writing this essay, I went looking for the link again, and was glad to find it inactive.

I'd come across the picture while researching The Shape of the Eye, my memoir about raising a daughter with Down syndrome. Nearly four years into the project, I'd come to see that it wasn't enough to tell Laura's story; I wanted to set her story against the way the condition's story is told. So I'd been reading genetics textbooks, parent guidebooks, alternative medicine guides, children's books, and more, trying to discern patterns in that story. But on a rainy Oregon morning in January, I had one of the bright ideas that tended to delay the completion of my book: I realized that in all my research, I had focused almost exclusively on words. I typed Down syndrome into Google Images and hit enter.

What appeared on the screen, a fraction of a fraction of a Mississippi later, seemed the bright fragments of a universe, as if the images were hurtling outward from the moment of the syndrome's discovery. There were faces, karyotypes, charts, tables. Regional Down syndrome association logos, with their butterflies, doves, rainbows, hearts. A picture of John C. McGinley – the irascible doctor on the sitcom Scrubs, whose son, in real life, has Down syndrome. An 80s punk band called Down Syndrome. An ear, an eye, a double helix. Charts correlating maternal age and probability of trisomy. A younger sister with Down syndrome, an older sister without, hugging each other, grinning for the camera in party hats. A campus map, the clinic marked by a red X. A man and two women smiling, holding wineglasses at a benefit. A diagrammed heart defect. A line drawing of intestinal atresia. A smiling plastic surgeon. A double helix. A transgenic mouse. An elaborate painting by a man with Down syndrome, on an outsider art website. A molecular biologist looking up, smiling, from a lab bench, pipette in hand. I clicked and scrolled, past a doll with Down syndrome (incurved pinky, transverse palmar crease), a palate mapped with black dots (speech study), and then I saw the teenage boy.

He was caught in a flash photograph, the tubes and dials of a hospital room lit dimly behind him. It was hard to tell his gender at first, his face was so badly bruised. He had a black eye, bloody teeth, swollen lips. In the stark light he looked almost panicked. I clicked on his face and found a breezy, fragmented narrative of an emergency physician's day: I'd stumbled across the doctor's personal website. Attached to the boy's picture was this explanatory caption: "A sudden fall in a Down's syndrome patient. . .Note the relative absence of a nasal bone on X-ray." There were other patients too, each with their blurry digital photographs, but only the boy with Down syndrome had a face; and paradoxically, though he was the only one identifiable, he was also the most dehumanized.

It was a common experience while I was writing my book. I would be paddling along, enjoying the special caffeinated relaxation that only diligent procrastination can provide, then get blindsided by an image or a word. Often it seemed to me that the ordinary boundaries between "personal" and "academic," or between "literature" and "science," had been simply tossed aside, or were never there in the first place. My daughter's story opened a door on an endless storeroom of dry, uncatalogued facts. Sifting through them, I'd stumble across some cursed charm or amulet, something that conjured a deep apprehension about my daughter's place in the world.

I wondered what the doctor knew about Down syndrome. I remembered a genetics textbook I'd come across, one evening in the university library. In it, I'd seen another flash photograph of a teenage boy with Down syndrome. The boy was naked, standing against a white wall marked with inch measurements. A chromosomal mug shot. In textbooks nowadays, you're more likely to see appealing pictures of smiling children. But more "positive portrayals," welcome as they are, are not enough, in the same way that respectful language is a beginning, but not enough. Our newspapers abound in positive portrayals. What we need is a shared vision of dignity across the lifespan: a sense that people with Down syndrome are not only cute children, but adults too.

In her memoir The Liar's Club, Mary Karr notes that an argument with her father stands out in her memory precisely because it is atypical. As a memoirist and practicing human, this comment rings true for me. Good stories, by definition, tend to be unusual. This is true, as well, for the photo of the teenage boy. In many ways, the photo is an outlier, and the doctor who took it and displayed it is not, in my view, remotely typical: we like most of the medical professionals who've helped Laura, and have become friends with some of them too. In addition, there are issues raised by the photo – like the violation of the patient's privacy – about which there can be no serious debate.

So why bring it up? Because in another way, I think the photo is typical: it betrays a deeply conflicted view of people with Down syndrome, a view common in our culture. On the one hand, the boy was seen as a human worth treating. On the other hand, he was seen as unworthy of the privacy given the doctor's other patients: he was a specimen, something to display. In this way, the photo of the boy embodies the jarring alternation I found, scrolling through my search results. First a face, then a karyotype, then another face. . . taken together, the images illustrated the gulf between the two radically different views of Down syndrome: between people and defects, hope and tragedy, stories and diagnoses. For a long time I had been writing in hopes that I might bridge that gulf. I was coming around to simply accepting it as a feature of the world. The boy's photo was striking because it embodied both halves of the contradiction: he was person and specimen at once.

In a broader sense, my search results illuminated the problem faced by patients, their families, and medical professionals: we do not have a coherent cultural idea of what it means to have Down syndrome, and especially what it might mean to be an adult with Down syndrome. Moreover, that confusion is mostly unspoken. We have the images, the face, the unusual eyes, but we have no agreement on what they mean. Ultimately, this confusion raises a basic question: What conception underlies the care we give to people with Down syndrome? Why the sutures, the ice packs, the splints, in case of a fall? Why repair the heart defect, the intestinal atresia? What life can the patient hope for, post-repair?

I didn't always know why I was writing Laura's story, why I felt driven to do it. But one goal was to contribute, in a small way, to an emerging common sense of Down syndrome: one which transcends the ordinary opposition between "clinical," in the pejorative sense, and sentimental. It seemed and seems to me that people with Down syndrome are seen either as "good-natured," in a childlike way, or are held up as examples of bad nature. Too often they are seen either as angels or defects; too often, they are seen as perpetual children. I think that we would be better served seeing them as present and future citizens; that our medical interventions would be best if we keep that vision of adulthood and citizenship in mind; and that narrative – a narrative which is clear-eyed about medical realities, yet without surrendering hope – provides one means to make that vision real to the doctors of today and tomorrow.

Reactions:

4 comments:

Thanks, Louise and George, for a thoughtful meditation on the attitudes toward Down syndrome within our culture. I can't wait to read your book!

Amy Julia

Louise, I know that I'm a little late in responding to this outstanding post, but would you please make sure George sees this.

Thank you.


Dear George,

I must confess that I know very little about Down syndrome (I am learning though), but it seems to me, "Your words could be applied to all those who live with a disability, especially after one reaches adulthood and discovers, 'Families, as well as individuals with disabilities, no longer have access to adequate medical care or communal resources which are critical to living a fulfuling life --a life with family and friends, gaining employment, or giving back to society in any way they can.'"

Moreover, if you ever get the chance to re-release your book, I would use this piece, "Why pictures matter", as a prelude to your memoir. Obviously, you would need to make some changes, but from one "practicing human" to another, "It shouldn't be too difficult --and even if it is, "Isn't it worth the struggle?"

For example, you could write:

I didn't always know why I was writing Laura's story, why I felt driven to do it. But one goal was to contribute, in a small way, to an emerging common sense of Down syndrome: one which transcends the ordinary opposition between "clinical," in the pejorative sense, and sentimental. It seemed and seems to me that people with Down syndrome are seen either as "good-natured," in a childlike way, or are held up as examples of bad nature. Too often they are seen either as angels or defects; too often, they are seen as perpetual children. I think that we would be better served seeing them as present and future citizens; that our medical interventions would be best if we keep that vision of adulthood and citizenship in mind; and that narrative – a narrative which is clear-eyed about medical realities, yet without surrendering hope – providing parents, doctors, families, and every loving human being, who yearns to lend a hand or belong to something far greater than themselves, the means to forge a real vision for today, tomorrow and generations to come.

Yours truly,

Matt Kamaratakis

Amy--thanks for your kind words, & eagerly awaiting YOUR book! Matt, thanks so much. I'm finding that people can often relate their own experiences with disability, or with medical conditions, to my memoir. As for a new edition, I'm all for that: I hope to find a press to release the book in paper and e-book editions, and perhaps there'll be a chance for additional material.

And Louise, thanks again for inviting me to blog at BLOOM!

George,

We met at a conference in Iowa. I love your book.

Glad to read this thought-provoking essay.

I've been thinking, too, about the way in which we can strip a person with Down syndrome of their humanity with any number of stereotypes: "little angels," or "so warm and loving," or "so stubborn," or "the eternal child," or "EMH," etc etc.

I'm a doc, and for years it has been so hard to see past my daughter's diagnosis: I recognized her chromosmes as soon as I saw the karyotype. Those three little nubins of chromosome 21 were more familiar to me than my newborn daughter's eyes.

After twenty-two years I'm still struggling to see Sarah as "Sarah," rather than "Sarah-who-has-Down-syndrome."

Your book is beautifully written, and will help us all see ourselves and our loved ones more clearly.

Paul Austin