THE THING ITSELF
In high school I turned the page in my chemistry book, and there before me was a photograph of the molecules of the polio virus. Taken through an electron microscope, the picture could have been faked by setting fifteen or twenty Ping-Pong balls next to one another and snapping a picture of them in a dim room with black-and-white film well past its expiration date.
The photograph evoked a vertiginous feeling in me: How could the thing that had so radically altered my life be so simple?
THE KID IN THE PARKING LOT OF WAREHOUSE CLUB
I'm exhausted when I limp out of Warehouse Club, a discount supermarket on the outskirts of Detroit, where cartons have been razor-bladed open to reveal their contents: ten-pound sacks of rice or half a dozen boxes of tissues shrink-wrapped together. My cart is loaded down with industrial-size quantities of toilet paper and breakfast cereal and cans of tuna.
One of the neighborhood kids who hang around the doors asks me if I want help. Instead of my usual "No thanks, I'm okay," I let him help me. It's partly that I'm beat, but also that I'm doing him a good turn as much as he's doing me one.
"What happened to your leg?" he asks me as he's loading the groceries into the trunk of my Volvo.
"I had polio."
I feel like an aging movie star who's been asked her name by a restaurant maître d'. Polio was as famous as AIDS. Those of us who had it were figures. We limped around under its metaphoric weight. Polio had such cachet that occasionally people lied and said they had it when they hadn't. Having "overcome" polio was something you could put on life's résumé.
"It's a disease. People don't get it anymore. There's a vaccine now," I say, and hand him two dollars.
"Thanks, lady," he says.
THE BARE BONES OF AN ANSWER
How do I go beyond the bare-bones answer: "It's a disease. People don't get it anymore. There's a vaccine now"?
Since medicine has so often been put at the center of discussions about illness and disability, a medical definition may seem like a logical place to begin: "Poliomyelitis is a common, acute viral disease characterized clinically by a brief febrile illness with sore throat, headache and vomiting, and often with stiffness of the neck and back. In many cases a lower neuron paralysis develops in the early days of illness."
In those sentences a human being is present only by inference. Surely it is a person who experiences the feverwho feels her body being clothed in a thin garment of sweat, who is aware of her urine's heat as it flows from her body. Surely there is someone whose head aches, whose neck seems to move like a rusty hinge. And surely someone who experiences that last symptomparalysis: not the neat deadness so often assumed to be the lot of the paralytic but a state ripe with paradoxes.
With polio the body is not silent, as it is when the paralysis is a result of spinal cord injury. Anesthesia, absence of feeling, does not accompany polio paralysis because the virus attacks the motor neurons, leaving the nerves that carry sensation intact. In fact, just the opposite of deadening occurs: The affected parts of the body may be more sensitive, nerves jangling and twittering, so that touch itself can become painful. Some parts of my right leg are as acutely sensitive as my clitoris.
Viral infection has a haphazard quality, unlike most spinal cord injury, where the cord is severed ("I'm a C-7," my friends say, or "an L-6," naming the exact vertebra, cervical, thoracic, or lumbar; made even neater in common parlance"paralyzed from the neck down," "paralyzed from the waist down"rendering away all function and sensation controlled by the nerves below that vertebra.) My right leg, below my knee, is incapable of any movement save one: I can squeeze my toes downward. I have some very limited function in my right quadricepsseated, I can lift my leg a couple of inches above the floor. On the inside of my thigh there's a muscle I can flextrying to find the words to name it, I go on the Internet and find a site that gives a multicolored line drawing of the muscles of a leg along with their Latin names, but I can't figure out which of those is the lonely muscle I can tighten and release, an island of function marooned in a sea of paralysis.
In this story of polio the bodies of those who experience the illness will be present, but not just our bodies. Polio, a physical experience, is also a social one. The historian Charles E. Rosenberg noted: "Disease serves as a structuring factor in social situations, as a social actor and mediator. This is an ancient truth. It would hardly have surprised a leper in the twelfth century, or a plague victim in the fourteenth."
It is not just those who have a disease who understand this ancient truth. Polio belongs not just to those of us who were paralyzed by it but to our mothers and fathers, our sisters and brothers, our partners and our children; to those who cared for us, to those who brutalized usnot mutually exclusive categories; to those who saw us as palimpsests on which to write their discomfort, their fear, their pity, their admiration, their empathy.
Polio's meanings change over time: In one era it was an unnamed affliction; in another, it was a disease linked to the "immigrant menace"; during the Depression, the disease that had supposedly disabled Roosevelt and that he had famously "overcome" became emblematic of the grit and determination with which our nation would rise from its economic paralysis. Later it became a symbol of the power of technology to solve our ills. The story of polio became the story of its conquest. Now it is so unknown to a younger generation of Americans that people under thirty sometimes transmute the strange word into a familiar one, "polo"which causes no end of merriment on our part. "Quite a whack you got from that mallet." "Actually, it was an allergic reactiontoo much Ralph Lauren cologne."
THE STORIES I'M NOT GOING TO TELL
I'm not going to tell the story of the plucky little cripple stepping gamely forward on two wooden crutchesif she's a girl, her hair is in Shirley Temple curls and she's wearing a pale blue dress with smocking across the bodice and puff sleeves; if he's a boy, he has a cowlick, wears a cowboy hat, and has a toy silver sheriff's badge pinned to his shirt: those heartbreaking kids, frozen for all time on a March of Dimes poster.
This won't be the elegiac story with its expected arc beginning with normalcybuckteeth, swimming, football, swings in maple trees, sprinklers whipping across suburban lawnsand then ascending into crisisdizzying weakness, iron lungs, hot packs with their cloying smell of wet wool, the Dalíesque landscape of high fever; after that the slow and painful resolution of rehabilitation"Every day another muscle, and on to Berlin in the morning," as Wilfred Sheed, author and polio survivor, put it. And then the hard-won ending, with its return to the empire of the normal, albeit in a wounded body; the final chapters of the narrative, when not just the body but the self has been chastened, and from that chastening, grown.
If I tried to fit my life story into that narrative framework, the main event of my life would have occurred before I reached the age of three, and all the decades since would have been nothing but slow denouement. But that is not the primary reason I reject that way of telling this story.
I do not want to give you just my story. It is not only that I've grown tired of the solipsistic tendencies of contemporary American writingalthough that is truebut also that I want to write about the social experience of disability, not just the personal. In literature disability has most often served as a metaphor. We need only think of Captain Hook and Captain Ahab and Long John Silverall these characters springing to mind without our even having touched dry landmen whose evil, desire for vengeance, and general air of nefariousness are all hung upon a missing limb. Autobiographical worksincluding recent memoirs by Nancy Mairs, Leonard Kriegel, Kenny Fries, and Steve Kuusistoprovide an antidote to such neat formulations, presenting the lives of disabled people in their complexity and variety.
And yet autobiographyespecially in its reception by an audience already expecting the arc of the story to be that of a singular disabled person, struggling against the constraints of his or her impairmenthas the drawback of re-creating the notion of disability as an individual issue, one that will be solved by that person's adjustment to a set of straitened circumstances. In this memoir I will talk about my own experience of polio but will do so against a background of social experiences of the disease, which structure the nondisabled as well as the disabled.
How deeply rooted is the expectation that disabled people should be alone, separated from others, even if we are no longer segregated in institutions? Not long ago I was in a writing workshop at which I was the only disabled person. A photographer, writing an autobiographical text to accompany her photographs, showed a picture she had taken of an armless street seller in India. We had quite a conversation about this photograph, as she explained that she had become a Buddhist after taking this picture. When I asked why, she said: "Don't you see? He has no arms! "Yes," I said, "I see thatbut what was the connection between that and your religious conversion?" She could only repeat, as if explaining something to a very dense child"Don't you see? He has no arms!" And furthermore she said she knewwhen I asked how, she said she just knewthat his parents had cut off his arms to make him a better beggar: People in India did things like that.
And then she said that the picture had originally included another, nondisabled street sellersomeone who leaned over and made change for the man without arms.
I asked her how she had made the decision to crop him outbut before she could answer, several other voices from around the table chimed in: "Oh, I like the picture better with just him." "It's a stronger picture this way." All this without having ever seen the uncropped photo.
The notion that disabled people should be alone, isolated, not in community with others, is so deeply entrenched that we know the picture is a better picture with him on his own. We know it without ever having seen the other photograph. Those enormous institutions housing disabled people that once dotted the landscape may have been shut down, but much of that habit of segregation still persistsa need to isolate, to contain, to keep the disabled body from contaminating the normal. "Just him," the voices chorus from around the workshop table. "Him alone," chanting a prejudice they do not even know they have absorbed.
In conventional photographs of disabled people our bodies are nearly always solitary. We stare into the camera, immobilized, our "defects" displayed. Whatever the story of our life was, it is over. The narrative has happened. Our bodies are ruins. The viewer no more asks what will happen next than the traveler gazing at the Pantheon or the Colosseum wonders about its future, other than to hope it will remain forever unchanged. We are the final scene, the aftermath.
Before the conversation about the armless street seller, I'd seen a picture by Sebastião Salgado in the New York Times. I stashed the folded-up section of the paper in my canvas tote bag. All that day I kept pulling it out to show friends, calling people and saying, "Do you get the Times? . . . Look at the picture on page four in the Science Section. . . . Isn't it wonderful?"
Outside a school in New Delhi, India, children, nearly all of whom have had polio, the caption tells us, are shown. About a dozen of them are seated on a bencha few look withdrawn, one or two have their backs to the camerabut the rest are horsing around, laughing. We can imagine all kinds of futures for these kids. The pensive boy in the background will grow up to be a poetor perhaps a software engineer. The laughing girl at the center of the photo, grabbing her friend's nose, will become a theater director or a professor of literature, who lectures to packed classrooms and always has a line of students outside her office door. Perhaps the girl with her back to the camera is the rival of the one with her hair in braids; perhaps the unseen expression on her face is saying to her coterie behind her: Bharati is so childish! with all the righteousness about maturity a twelve-year-old can muster. Whatever their stories are, they are not over, and they are not alone.
Within the disability-rights movementand the academic field of disability studies, which exists in a symbiotic relationship to itwe rarely think in diagnostic categories. We focus instead on social perceptions and barriers to access, the richness of the lived experience of disability. In this book I turn the lens of disability studies on a particular disease, for individual diseases do have meanings, biographies, histories. I explore how the character of polio was cobbled together by hundreds of thousands of acts, ways of speaking, historical accidents, economic forces, acts of resistance. It was shaped by the medicine, by those disabled by it, by those who feared it.
A History of Poliomyelitisfrom which I took the medical definition a few pages backwas written by a doctor, and so I suppose I should not be surprised that out of the more than fifty illustrations and photographs in the book, only two depict a person with polio. One is a photograph of an Egyptian grave marker showing a priest with a withered legthe earliest representation of polio. The other is an anonymous man with his head sticking out of an iron lungand I suppose I shouldn't be surprised that the caption does not even note the presence of the patient, describing what is shown above as "An early model of the Drinker Respirator known as the 'iron lung.' " (When respiratory muscles were paralyzed, an iron lung was used as a mechanical replacement.)
There's a portrait of Michael Underwood (1738-circa 1810), reputed to be the first physician to have written about polio, his face half shadowed beneath a powdered wig; an obviously posed photograph of Rudolf Virchow (1821-1902), the German pathologist, studying a slide through a magnifying glass. The photographic portraits of Simon Flexner, Ivar Wickman, David Bodianthe great men of the battle against poliocould equally well be bank presidents or professors in the classics department of Ivy League universities. Some others are posed, in white coats, near microscopes or other laboratory paraphernalia.
The story follows the pattern of fairy tales in which suitor after suitor vies unsuccessfully for the hand of the beautiful princess. In this case a dragon need not be slain or a series of trials undergone so that true love can be proved; instead a vaccine must be found to prevent the disease. As it should be in such stories, the victor is from a humble background. In this case not a woodcutter from a cottage on the edge of the forest, but the son of Russian Jewish immigrant parents.
I should not be surprised that when a doctor writes the history, doctors and scientists are given center stage. Utopians begin by looking in the mirror, and I suppose historians do too.
Copyright © 2006 by Anne Finger. All rights reserved.