Anne Finger - Elegy for a Disease: A Personal and Cultural History of Polio

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Contents

For Karen

ACKNOWLEDGMENTS

My deep thanks to Max Finger, Simi Linton, Brian Thorstenson, Stephen Pelton, Karen Donovan, Susan Finger, Margo Wechsler, and Susan Roth, who not only have been wonderful friends but have read drafts of the book and given me invaluable help along the way. In addition, Susan Finger was enormously helpful with research assistance. Steve Taylors assistance with information about state institutions for people with developmental disabilities was generous and timely. I owe a special debt of gratitude to Stephen Pelton and Judy Green for urging me to write honestly about difficult periods of my life.

This book would not have been possible without the disability-rights movement and the field of disability studies that has grown from it. I cannot possibly include everyone from that world who has nurtured and sustained me, challenged me, and filled me with hope and laughter, but I would be remiss indeed if I didnt name John Belluso, Gene Chelberg, Kenny Fries, Lakshmi Fjord, Rosemarie Garland-Thomson, Carol Gill, Jenny Kern, Georgina Kleege, Cathy Kudlick, Victoria Lewis, Simi Linton, Paul Longmore, Marsha Saxton, Corbett OToole, Alice Sheppard, Sue Schweik, and Barbara Waxman.

Im deeply grateful to those who were willing to share their knowledge and experiences with me, often of intimate and painful parts of their pasts. A special thanks to Larry Kohout and Henry Haverstock.

Enormous thanks to my wonderful agent, Nat Sobel, and everyone at St. Martins, especially my editor, Diane Reverand.

Finally, Nomad Cafe and Bittersweet Caf kept me caffeinated and provided me with a change of scene from the room of my own.

The microbe is nothing; the terrain is everything.

LOUIS PASTEUR

I was physically disabled, and no one who hasnt lived the life of a semi-cripple knows how much that means. I think it perhaps was the most important thing that happened to me, and formed me, guided me, instructed me, helped me, and humiliated meall those things at once. I have never gotten over it, and I am aware of the force and power of it.

DOROTHEA LANGE

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

Im 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, Im okay, I let him help me. Its partly that Im beat, but also that Im doing him a good turn as much as hes doing me one.

What happened to your leg? he asks me as hes loading the groceries into the trunk of my Volvo.

I had polio.

Whats that?

I feel like an aging movie star whos been asked her name by a restaurant matre 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 hadnt. Having overcome polio was something you could put on lifes rsum.

Its a disease. People dont get it anymore. Theres 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: Its a disease. People dont get it anymore. Theres 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 urines 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 (Im a C-7, my friends say, or an L-6, naming the exact vertebra, cervical, thoracic, or lumbar; made even neater in common parlanceparalyzed from the neck down, paralyzed from the waist downrendering 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 theres 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 cant 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.