Sittin on a bar stool by rehab

My Body Politic

A Memoir

SIMI LINTON

THE UNIVERSITY OF MICHIGAN PRESS Ann Arbor

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First paperback edition 2007 Copyright © by Simi Linton 2006 All rights reserved Published in the United States of America by The University of Michigan Press Manufactured in the United States of America

Printed on acid-free paper

2010 5 4 3

No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, or otherwise, without the written permission of the publisher.

A CIP catalog record for this book is available from the British Library.

Library of Congress Cataloging-in-Publication Data

Linton, Simi, 1947– My body politic : a memoir / Simi Linton. p. cm. ISBN-13: 978-0-472-11539-6 (cloth : alk. paper) ISBN-10: 0-472-11539-1 (cloth : alk. paper) 1. Linton, Simi, 1947– 2. Women with disabilities—United States—Biography. 3. Paraplegics—United States—Biography. 4. Traffic accident victims—United States—Biography. I. Title. HV3013.L56A3 2005 362.4'3'092—dc22

2005017907

ISBN-10: 0-472-03236-4 (pbk. : alk. paper) ISBN-13: 978-0-472-03236-5 (pbk. : alk. paper)

ISBN-13: 978-0-472-12128-1 (electronic)

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Acknowledgments

It is for the pleasure of their company that I dedicate this book to the disabled people I know: the ribald, the kind, the uncompromising, the surly, the burly, the invincible . . . the mothers of invention.

And then, with thanks, to: Bob Lescher, my wise and steadfast agent, my very good friend, for all

he has done, for the muffins and for his wonderful stories. The expert Barbara Craig and Carolyn Larson at Lescher and Lescher,

Ltd. Sara Bixler, for unleashing her smarts on this book and strengthening it

immeasurably. The executive editor of all time, the gracious LeAnn Fields, a friend to

books everywhere and, to my great benefit, a friend to mine. The staff at University of Michigan Press, in particular Mary Bisbee-

Beek, Marcia LaBrenz, Rebecca Mostov, and Pete Sickman-Garner. Alvaro Gomez, for the words, and for being, with grace and good

humor, my right and, on alternate days, my left brain. Myrtilda Cissy Tomlinson, for her great care. Everyone who read large and small quantities of these words: Gene

Chelberg, Anne Finger, Rosemarie Garland-Thomson, Cathy Kudlick, Paul Longmore, Corbett O’Toole, Harilyn Rousso, Barbara Waxman- Fiduccia, Florence Weiner, and others.

My darling David, who, despite being confined to a pair of roller skates lo these many years, has managed to triumph over his affliction and lead a serious life. Skate-bound, as it were, he is a credit to his kind and an inspiration to us all.

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Contents

1. Conscripts to the Cavalry

2. Brave New World

3. Coming Out in the West

4. A Special Education

5. Going Away

6. Pleasures and Freedoms

7. The Design of My Life

8. I Sing My Body Electric

9. What I Learned

10. Weddings and Marriages

11. Citizens in Good Standing

12. Lessons from Children

13. Rufus

14. Odyssey of a Sure-footed Man

15. The Cripple Girl & the Blind Boy Go to the Museum

16. Our Body Politics

17. Epilogue

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Conscripts to the Cavalry

On a spring day in 1971, my husband, my best friend, and I set off from Boston, Massachusetts, bound for Washington, D.C. We walked down the street together, we stood together near the entrance to the Mass Pike, and in unison we thrust our thumbs out, looking for the ride that would take us far on this first leg of our journey. We got the ride, and then another, and then another. And with each ride we got closer to Washington. But we never got there, and by the end of the day, my friend Carol was dead and my husband John, the ferociously smart man I’d married much too young, was in a coma he would never wake up from. I lay down the hall from him, tethered to tubes and machines, breathing hard to keep myself alive.

We had been on our way to Washington to protest the war in Vietnam. We had no doubts on that day we set out. This was the demonstration that would end the war, and we would—we must—voice our outrage. While it hurt us to know about the horrors, we lived at a safe distance from danger. Just two years before, John and I had been planning to go to Canada so that he could escape the draft, but then, just weeks before we were to leave, he fell and damaged his knee and his draft status was changed to 4- F, an immediate exemption from service. Carol and I had been training at a local center to be draft counselors, to assist young men who were trying to avoid the draft. We wanted to do something meaningful—something to show that we were not just tie-dye hippies, flashing peace signs to passersby.

We all knew of men who had been killed, and of those who were wounded and wouldn’t ever walk again, or hear again, or breathe properly. But we were safe from that. We could only speak out against the injustice, and so we set off.

Suddenly, this became my story alone to tell. I lost my husband John, a wry wit who rebuked all that was hypocritical and phony. He led a frantic life, and was heard to say openly and with assurance that he knew he wouldn’t live long. He had a nervous energy and a long lean body that caught my eye the first time I saw him. John dropped out of college shortly after I did, and we both had a defiance about us. Neither of us wore it comfortably. Mine was tinged with self-doubt, and his with a brashness

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and a lust for beer that often muddied his righteousness. We were living together and apart. He had loved me and been my friend, but he had hurt me too. He pulled and pushed, wanting too much, or nothing. I loved him too, and pulled and pushed back, and neither of us was wise enough to make it better.

And I lost Carol, an upright oak tree. A woman who made art of everything she did. Her long fingers were constantly weaving, twirling, braiding—threads, rope, string; wherever she was, she would pull from her pocket a small crochet hook and some yarn, and hook and loop, hook and loop, catch and knot, cutting the thread with her teeth, tucking in the ends, sliding it back into her pocket when her turn came up on the supermarket check-out line. On her face, she wore a red birthmark that slipped across her cheek, and gave her a soft glow. I told her many times how beautiful it was, as were her almond-shaped eyes and the long brown hair that flowed to her waist. She lived with a man named Rick, and they were a lively, playful pair. The four of us spent most of our weekends together. Carol and I had met at one of the temp secretarial jobs I took to make ends meet, and we insisted that we all get together. We would tease the guys later on because neither trusted our judgment, and had put off getting together for months. Once we did, we stuck. Rick didn’t go with us to Washington, as he was the only one among us who had a steady job, and he had to work. He would hear when he got home that night how his life had been shattered too.

So Carol and John were lost to us. And John and Carol lost life. I breathed, and breathed, and breathed, and in beds down the corridor from me in a Baltimore hospital they each stopped breathing. Carol that same day, and John, they told me, a few days later. I never saw them. Or, if I did, I don’t remember. I’ve blotted it all out. The crash, the ambulance, the airlift in the helicopter, and the emergency room are locked up somewhere, I hope never to be found. But now, many years later, what I do remember, and want to reconstruct here, is the life I grew into. The new shape and formation of my body were set on that April day; the meaning this new body would have for me took years to know.

For it wasn’t until some time after I sustained the injury to my spine that immobilized my legs, after I learned to use a wheelchair, and after I had reckoned with myself and the world for a while in this new state—it wasn’t until then that I gained the vantage point of the atypical, the out-of- step, the underfooted. It took being turned away from restaurants because they would not provide a table for me and discovering that my local polling place, library, post office, and movie theater were now off-limits to me. I first had to endure strangers coming up to me in public to offer a pat

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on the head and tell me how brave I was and obstinate college professors who thought it was my responsibility to get to classes scheduled in buildings that had no ramps or elevators. Crucially, though, it was banding together with other disabled people for good purpose that taught me what I needed to know for this new life.

The injury was a sudden cataclysmic event, and the paralysis in my legs was instant. Becoming disabled took much longer. I learned along the way how a young woman of privilege, although living at the time as a college dropout and self-fashioned hippie in rented rooms on the outskirts of Boston, could, by the collision of a tinny Volkswagen bus into a cement embankment on Interstate 95, become a marginal citizen, her rights and liberties compromised, and her economic advantage, white skin, and private school education weakened currency in this new world she inhabited. It was, of course, the same world I had always lived in, but when I was a nondisabled person I hadn’t recognized the ways that world had favored me. I had always taken it for granted that if I could go places or get jobs that disabled people couldn’t, it was because I was strong and healthy and they had their deficits and incapacities. While I probably (my memory is fuzzy here) felt sorry for those who “couldn’t,” I saw no agency on the part of those of us who “could.” Certainly not those of us who were concerned about the plight of the unfortunates. We would at least want them to be cared for, housed, and fed.

Once I was pushed over to the other side, shelter and nourishment seemed meager fare for a body and mind that wanted a full life. I had ideas, I yearned to go to college, take a trip, get a job, and live on my own. I was a twenty-three-year-old robust and excitable young woman—ready for more life, not less.

After the accident, I spent almost a year in two different hospitals and a rehabilitation institute. I don’t remember much of the first few weeks. I was in an ICU and heavily sedated. Someone, I think it was a nurse, did tell me that John and Carol had died, but she must have had to tell me several times, because I kept asking for them.

It wasn’t until the third or fourth week that a doctor came to tell me that my legs were paralyzed. It seems strange now that I didn’t realize it. I seem to have been able throughout this ordeal to shut out many things. I must have known it on some level, but kept the thought at bay. I was lying in bed on my back unable to move anything but my left arm, since my right was fractured and in a cast, and I must have thought (if I let the thought in at all) that I was just too weak to move.

The doctor stood over me and delivered his news, not hurriedly, not

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insensitively, but briefly. It seemed he might leave then, but he turned back to me lying there in my bed.

“You know,” he said, “there are many young men coming back from Vietnam in the same situation as you, and I know you’ll find someone really nice to settle down with.”

That woke me up. How absurd this man was. Did he not know my husband had just died; did he not remember why I was there? Did he think this limp woman had lost her convictions? Did he think that I could now simply be matched up with a Vietnam vet, two people with nothing in common but our wounds?

I spoke. “Don’t assume you know what will happen to me, what I might do.”

Would I be able to decide what I would do? I didn’t know; I didn’t know a thing. I didn’t know what “paralyzed” meant. Not for me.

After a month in the Baltimore hospital I was moved by ambulance to New York. There were surgeries to repair broken bones and damaged organs. A shoulder, a thumb, and some ribs had to be set right. The bones that house my spinal cord were pinned in place with metal plugs you can still see on x-rays. In the hospital I lay in bed being fed, ministered to, coddled, and soothed by my mother and my sister, and by a stream of nurses, slipping in and out of my room. My mother made me chicken soup and brought flowered pillowcases to rest my head on. She was with me all the time. In between the quiet moments were the surgeries, the painkillers, the nightmares. Snarling tigers and rabid beasts attacked me in my dreams, and I was their captive, penned in by the metal bars of my narrow hospital bed.

My doctor promised me that once I got to the rehab center I could get out of bed. We both knew that meant into a wheelchair. He’d said it before, I knew it, but he didn’t repeat it each time, and I didn’t think too much about it. Everything was very immediate—whether I hurt or not, who was in the room, how scared I was at night, and also my family and friends who surrounded me, feeding and distracting me. It must have been hard for them not to talk about the past, about John or Carol, nor talk at all about the future, a future none of us could quite imagine.

They did everything for me, and doctors and nurses did everything to me. I was exempt from my responsibilities as friend and sister, daughter and cousin. I didn’t call people; they called me, and someone held the phone to my ear so I could talk with them. I didn’t visit them; they visited me. I didn’t bring them birthday presents or run errands for them; they did that and more for me. They were generous and steadfast. My sister, Chick,

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went to John’s funeral in Lexington, Massachusetts, and absorbed for me the shock and the sorrow of our Boston friends and family.

Months passed, and I was transferred to a rehab center in New York City. The first day there, in a room not much different from the one in the hospital, in another bed with metal side bars, I was visited by a group of other patients. They came into my room, five or six young women and men, all in wheelchairs, waving and smiling, introducing themselves, offering to show me around. “When will you get your chair?” someone asked, like it was something I should want.

They soon left, talking loud, kidding around. Two guys tried to push their chairs out the door at the same time so they crashed into each other. “Fuck you,” said one. “No, fuck you,” said the other. I understood it as performance for my benefit, and I was flattered. I was left alone, wanting to be part of the group, wanting to move. Wanting to be like them.

I lay there in bed, on my side where the nurse had positioned me, with pillows tucked behind my back to keep me in place. I felt so helpless. The call button to summon the nurse was there, just a few inches from my hand, but I could think of nothing to ask for. I scanned the vacant room. I had three roommates, but they were all out of bed, down the hall somewhere, doing their scheduled activities. A clear plastic cup with urine sat on my nightstand, taken from the long tube inserted in my bladder. I jiggled the cup and watched the little white bits float up and down in the yellow liquid. Had it been just weeks before that I had been splayed out on my living room floor in Cambridge, tripping on LSD, entranced by the oily purple globules rising and falling in my lava lamp?

And had it been just a couple of years before that when I stood tall on the roof of my apartment building in the East Village, with the New York City skyline rising up behind me? Dressed in John’s black V-neck sweater and a pair of tattered jeans, I was having my picture taken for an underground newspaper, the East Village Other. I would be the centerfold for the next issue, with a bold caption over my head: SLUM GODDESS.

Now, I was a slight, horizontal body draped in a loose white hospital gown. It opened in the back so if a doctor or nurse approached my bed, I would be available for their examinations and ministrations. I was more at home on the sooty roof than on my antiseptic hospital pallet. I was clothed then, costumed as an ethereal symbol of the counterculture. I stood in profile, with my face tilted upward, and my long wavy hair blowing out behind me.

My hair had been chopped off by a nurse in the emergency room and was slowly growing back. It was just long enough to comb behind my ears and fold into a little wave on top. The harsh fluorescent lights in my room

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sapped all tone and nuance from the atmosphere. There was nothing ethereal about me now. I had become an assemblage of body parts, notable only if they worked or not.

I got the wheelchair, but it took me a while to catch up to the others. Even sitting up in it made me dizzy. I had not been out of bed since the accident and weighed under ninety pounds. I hadn’t used my arms for anything more strenuous than scratching. Slowly I began to gain strength, move around a bit, and eat. Thick milkshakes, bread and butter, mashed potatoes. I had the wild cravings of a pregnant woman. I’d wake up thinking about jelly donuts, and couldn’t rest till I had one. Sitting up at a table to eat was an amazingly pleasing activity. Whatever I hungered for, my sister appeared with shopping bags filled with it: rich, smelly cheeses, olives, peanut butter sandwiches, apricot nectar, or a packet of vegetables and brown rice she had cooked on her stove, wrapped up in tin foil, and transported to the hospital at breakneck speed so it arrived still warm. And she acted as if this were a natural act, not heroic, not to be fussed over.

Treats were shared with my roommates. We ordered Chinese food at odd hours. Greasy egg rolls for everyone. We made each event as festive as possible. We were in a sorry place. Gray and alien. And there was nowhere to hide. We were thrown in together and exposed in all that was messy about our lives at that time. Our piss and our shit, our tears and our awkward visits with people who didn’t know how to talk to us. The flimsy curtains that surrounded our beds hid little, but nurses and aides would appear at any time, day or night, and fling them open or snap them shut in order to do things to us: adjust our position, take blood from our arms, ask out loud to all around—including the aunts and uncles, boyfriends, and such clustered around each bed—if we’d had a bowel movement that day. Most of the nurses and aides were champions. They were sensitive and caring, and knew just what we needed. But there were others who were peculiar, self-involved, or sometimes downright hostile, and they had us in their grip.

I went to physical therapy every day. I lifted, stretched, pulled. I hurt. My legs were stock-still, and my feet in red sneakers perched on the footrests of my wheelchair, but the rest of my body kept moving, working hard to get us around. I’d never had very strong arms, but now these were becoming the most robust parts of my skinny little body.

The most difficult task was to learn how to move my whole body as a unit. The top half acted automatically, performing as it had for twenty- three years, but I had to consciously take charge of the lower half. Not only did it not move of its own volition, but the sensations below my waist

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were radically different from those I’d felt before. At the very beginning, when I was first injured, my legs felt numb, like when you get Novocain at the dentist. I couldn’t feel if anyone touched me, nor could I sense where my legs or feet were unless I looked down and made an assessment of their position. But, over time, that changed. Feeling returned in my pelvis and genitals, and in other spots like my knees, my thighs, and the bottoms of my feet. The sensations that I feel in the lower half of my body, and there are many, are familiar to me now. The precise and specific sensations above the level of my injury meld into the more diffuse and varying feelings below, but they are all part of me. There is no longer a clear line of demarcation between these zones. There is a gradual change along the length of my body. Although my toes can’t always tell the difference between hard and soft, rough and smooth, they alert me when they have encountered an object, and they tingle inside and tell me where they are. While initially I had to find my legs with my eyes, I can now reach down with my arm, hook it under my knees, and reposition my legs with as little conscious thought as it takes to reach out my hand and pick up a pencil on my desk.

Learning all of this and gaining strength took a long time. In the current managed-care climate, people with similar injuries are shuttled out of the hospital, into rehab, and then out the door as soon as they are medically stable, sometimes just three weeks post-trauma. In 1971, people stayed in the hospital and then in rehab for months, gradually getting stronger, learning to do the familiar in a strange new way. I was in the hospital for four months and then six months in rehab. Day after day, the physical therapists and the aides worked us hard. They were relentless; little fazed them. Their job was to get us strong and keep us moving forward. If someone got tired, or angry, or depressed, the solution was more exercise. But if you were really hurting, they would circle around you and help you out.

Much of the day was filled with stupid activities that I had little patience for, like learning to make a cake from a packaged mix in the occupational therapy room, or the meetings they scheduled for me with a staff psychologist. Most of the time, I wouldn’t talk to him. I didn’t show up for the appointments, or I would stop by and give him a report of my activities with few embellishments. He was a soft, mild-mannered man, and did seem concerned. Yet his tailored slacks and sports jacket and slicked-back hair showed him to be “straight,” and certainly over thirty. I feared he might talk me out of myself.

I had only vestiges of my life with me in that place: a big brown suede pocketbook with floor-length fringe I had on the trip to Washington,

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emptied now and folded into a drawer in my nightstand, and a beaded headband I put on every day. The clothes I wore were loose pants and t- shirts my mother bought in a hurry at Macy’s. They were not what I would have chosen, but I could not go to Macy’s to choose them. So what I was left with were the few decisions I could make in a day: whom to talk to, what flavor ice cream to eat, whom to trust. Small as I was in that hospital- issue clunky metal wheelchair and my baggy clothes, I said yes and no to things.

I remember one day the psychologist sought me out to report the results of an IQ test he’d administered the week before. He seemed excited with his news that I was quite smart. I had scored even higher on the test than he thought I would, he told me, and I quickly discovered that the more casual I acted and the more disinterested I seemed, the more insistent he became that I take this seriously.

The man earned his pay that day by patiently listening to me rant about his simplistic, meaningless, rote tests, which did nothing but affix a number to people, taking all that they are and shrinking it down to bits and pieces. Indeed, he may have been very talented and allowed me the adolescent thrill of getting a rise out of an adult, and the opportunity to vent my anger at him for making me think about my future. Maybe, somewhere in my response, he could see my first try at the kind of opinion-rendering I would one day get paid for.

I didn’t puff myself up like that often. Mostly, I think I was nice to people. It was a humbling experience being there. All these people in pain and needing so much, and most of the staff were decent people doing a hard job.

I often brushed off people’s kindness to me, showing an upbeat face, saying I was fine today, no need to worry. But not always. My friend Kevin found me once huddled in a vestibule outside the urologist’s office, crying. A few weeks before, they had taken out my indwelling catheter, and I was trying so hard to keep from peeing all over myself, but I couldn’t hold back and there I was again, wet and sad. “Kevin,” I sobbed, “he told me that maybe it would get better, but if not I could wear a pad when I went out. He said that it wasn’t so bad, people did that. But it is bad,” I said, “it’s terrible. I can’t do that.”

Kevin said, “Yeah,” and pointed to the bulge in his pants leg where, as we both knew, there was a tube coming out of his penis, running down his leg, into a bag strapped to his ankle. But it was Kevin’s turn to comfort me, and he did, and before long we were laughing at how much beer he’d drunk the night before to make his bag so fat.

Another day I hung around the nurses’ station waiting to talk to one of

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the nurses I liked. I didn’t want to approach her, or make a big deal of it, like there was really something the matter, so I just waited till she was alone there and I could casually pull my chair up to hers. I asked how her day was going.

Then I said, “You know that salesman who you order equipment from? Yeah, well, he came to my room last night and said he had to measure me for a back brace. It was late,” I said, “so it was weird. The room was pretty dark, there was no one around, and he sat on my bed, and every time he reached down to measure my waist, or the length of my back, he rubbed my breast.”

She said that it was hard to do that measurement without touching me, maybe it just seemed like he was rubbing my breast.

“No,” I said, my voice getting louder, “it was wrong. What he did was wrong. When I tried to stop him, he got annoyed and told me to hold my hands over my head.”

I found the courage to name him. “He’s a creep,” I said. “Please don’t let him near me.” I began to cry.

She took my hand. “Don’t worry,” she said. “I’ll make sure that won’t happen again.”

He never came into my room again, but I saw him move easily about, visiting other patients on the floor.

I stopped going to the sessions with the psychologist, but physical therapy made sense, and I did everything they told me to do. As I got stronger and learned how to use my chair, I wanted to get out of my room, to go somewhere—anywhere. I teamed up with the group that had visited me that first day, and we would barrel down the hall, get on the elevator, go to the snack bar, sit out in front of the hospital, do anything for privacy, fresh air, space, and just to move. Our favorite spot was the roof, which in the summer and fall months when I was there was often hot and dirty, but it got us out of the stifling rooms and corridors where you smelled medicine, heard groans, and saw nothing that wasn’t starkly white or hospital green.

We snuck bottles of scotch up to the roof, and some of us smoked reefer. We had a couple of portable radios and were always fighting over which stations to listen to. Here was a group of women and men who were anywhere from seventeen to around thirty-five. We had landed in this place with little in common—a college student who smacked up his sports car on spring break, a country boy thrown from his horse, a construction worker who toppled off a high rigging, a young woman who fell off the back of a motorcycle, and me, a college dropout, a young widow, kind of drifting, kind of working, kind of OK, sideswiped on her way to an anti-

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war demonstration. The scotch drinkers and the pot smokers tolerated each other’s habits.

In the days before the hospital I remembered that these groups had been divided along party lines, but here we had to mingle, there was only one party for us.

The songs “American Pie” and “Bridge Over Troubled Water” were big hits that summer. Whenever the first came on the radio we’d sing along, driving our Chevy to the levee. Screeching at the top of our lungs, we were a group of caterwauling bruised creatures, eager to cut loose with our voices, our bodies tied down by our impairments, and held captive in this institution. Yet when we heard the first plaintive strains of “Bridge Over Troubled Water,” we’d get quiet and sad. Even late at night, with everyone in bed, if the song came on, someone would turn the volume way up and each of us in our rooms up and down the hall would hear Simon and Garfunkel reassure us.

If you need a friend I’m sailing right behind. Like a bridge over troubled water I will ease your mind.

Up on the roof, after visiting hours, when all our friends and families, girlfriends and boyfriends had gone home, when our loneliness and isolation were at a peak, we huddled together and talked about sex. Most of us had sustained spinal cord injuries to our necks or backs, others had brain injuries. All of us were radically altered in the way we moved, felt our bodies, responded to sexual stimulation. How did we know this? This group of relative strangers, women and men, adolescents, married people, probably both gay and straight people (though no one said that they were gay), we shared our stories—our attempts at masturbation, our furtive fondling with girlfriends and boyfriends up here on this same roof, our few private moments at home when we had the precious weekend passes that got us out of the institution. Our bodies had changed, our lives had changed. Some had partners who wanted them to be the “way they were before,” some didn’t know how their partners felt and were afraid to ask, and some of us, like me, were alone, not knowing how we would meet anyone now. What was clear and uniform across the group was that we had strong desire. We felt lust in our hearts, and our bodies tingled and stretched out toward sex, toward pleasure.

Like the young adolescents we had only recently been, we didn’t know what to do with all the pent-up feelings. Here we were, swept into this

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dormitory, living four in a room, trying to stretch our curfews, surrounded by worried, hovering parents—parents whose clutches we’d just escaped from. Now they were back in charge, and we needed them. It was very hard for both sides.

So when questions about sex came up, we turned to each other. “What did you hear?” “Can we get any books?” “What happened when you went home last weekend?” We could start putting the pieces together. The doctors were a mixed group on this score. Some were well-meaning, but awkward. Others didn’t offer much help. There were no women physicians there, and the only male doctor I would have liked to talk to was handsome and appealing, and I dreamed about him at night. I couldn’t ask him. So I picked out one of the other doctors who seemed nice enough. Although he looked like my Uncle Harry, I plucked up my courage and asked him if he could explain a couple of things about sex to me.

“You know,” he said, “most of the research and most of our experience is with men. It’s not as complicated for you women, you can do everything just like before. And don’t worry, your period will come back soon.” I hadn’t had my period since the accident, and no one had said why or that it would return.

“But,” I asked, “does that mean I could get pregnant?” It hadn’t occurred to me.

“Well, yes, sure, if you want, and there are a couple of doctors around the country who have experience delivering babies of women with spinal cord injuries.” I had not wanted to have children; my concern had always been not getting pregnant. I didn’t even know what else to ask him. It was all too much for me, and too abstract. “Well, thanks,” I said. He leaned in across the desk and said, “We don’t have much information yet on women, but you go out and give it a try and come back and tell us all about it.” Come back and tell him? Why would I do that? Why was the information only about men? I knew I would never tell him anything personal.

Another time, I approached one of the physical therapists, a young woman about my age, kind of a cheerleader type. When I asked her if, maybe, we could talk about sex and stuff, she looked down at the floor, rang the button to call the elevator, and said maybe I should speak with my doctor.

Finally, a group of us found a physical therapist and a nurse who were great allies. They kept saying we were going to be fine, we could have a pleasurable sexual life. Many people before us were doing well, had lives, jobs, and relationships. “You make the adjustments,” they told us. “It’s not always easy, give it time, don’t give up.” The nurse said to a friend of mine: “Try to relax and just see what comes, see what feels good.”

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We weren’t completely convinced, but their optimism was helpful, particularly because they seemed to really know the people they were talking about. We had heard that one of the therapists was married to a former patient.

One of the people I particularly remember was an aide named Charles, a tall lanky man, wiry body, dark black skin, a warm, funny guy who used to help me with the exercise equipment in the physical therapy room. After I’d been there about three months I got my first pass to leave the rehab center, and spent the weekend at my mother’s house. I came into the PT room on Monday morning still a bit dazed from a weekend spent trying to figure out how to live and function in a world more complex than the simplified routine of institutional life I’d gotten used to. My major accomplishment for the weekend was that I had bought cookies for everyone. I actually went into a store, opened a wallet, and purchased cookies. Sure, my mother had given me the money and the wallet, sure, my sister had gone with me and helped get my wheelchair up and down the curb on the corner, so I could get to the bakery, just a block away, but I’d done it. I was in good spirits and had a big grin on my face as I passed the cookies out. Charles came up to me, leaned way down, and, with a sly chuckle in his voice, whispered to me: “Been doin’ them horizontal exercises?” That is the sweetest memory I have of that place. Here was my big brother telling me: “You’re OK. You’re attractive. You’re going to make it. Go ahead, enjoy your life.”

Such moments made me strong. A few members of the rooftop gang petitioned the doctors to bring in an educational film that we’d heard about on sexuality and disabled people. I was to be one of the spokespersons in our meetings with the doctors. Before our meeting, our allies from the staff came to help us prepare. They had just returned from a conference on sexuality held at a rehabilitation center in the Midwest and spoke with excitement about the development of a new area of research in sexuality, and about the presentations made at the conference. They mentioned something in passing that caught my attention—many of the people speaking at the conference were disabled people who were actively involved in the work.

That thought was in my mind when we went to speak with the doctor. When he dodged our questions, and when he let it be known that this was his decision to make, I persisted, saying it was about our lives, we had a right to know. It was not many weeks after that, while still an inpatient at the rehab center, still not knowing where my life was going, that I decided to go back to college to get a degree in psychology. I would come back to this place with the authority to implement a sexuality program. I would

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listen to what patients wanted and needed, and I wouldn’t be high-handed or patronizing. I wouldn’t tell them I knew what was best for them. I would listen.

I had no idea what it meant to “get a degree in psychology.” Graduate school? It had never even occurred to me. I had been a lousy student in high school, had gone to the only college that accepted me, and lasted two months. I had met John there, and he lasted just a few months more than I did. We both read books, and paid attention to things, but we nurtured the belief that anything worth knowing could be learned outside of the college classroom. At the time the accident occurred I was faltering in that conviction, and tired of flopping from job to job, unable to find anything that met my criteria of “meaningful” and “creative.” The only thing that had held my interest was volunteer work for the anti-war movement, and the training I went through to be a draft counselor.

While this idea about going back to college was brewing, my friend Barbara had been coming to visit me at the rehab center. She speaks French and offered to give me lessons twice a week. She brought grammar books and notebooks, and threw herself into the job. I hadn’t even read a book or watched television in all those months. Nothing had held my attention until this. During the day, when I snuck out of the cake-making sessions or wanted to get away from the shrink, I went to the library in the basement of the hospital next door and did my French homework. I was surrounded by medical students poring over their thick anatomy textbooks. They didn’t look at me. Even the young intern who had been in my hospital room many times on rounds, when I said hello to him, glanced quickly at me and, just as quickly, looked away. I turned back to my books; I would have to get stronger.

Something serious had happened to me, and I was starting to feel like a more substantial person. A woman now, although no longer a married woman and no longer a walking woman, I was, mercifully, no longer a girl. Even in this forest of overseers, where every move I made was scheduled and every quantity of liquid I drank and eliminated was measured, I had opinions. I was cowed by the outside world, the walking world, but here inside I had a role and a point of view. I was on leave from the anti-war movement, and left the skewering of the big guys at the Pentagon to others, they were beyond my reach, but doctors were all around me, and I saw the mischief in their brand of power-wielding and the hierarchies they imposed on others. They had saved me, and saved all my new friends, but I was outraged when they spoke for me or spoke down to a nurse I liked. I thought they shouldn’t be entitled to say “yes,”

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or, more significantly, “no,” to me with such finality. As a participant in the workings of an institution, I had something before me each day that I could think critically about.

During my fifth month in the rehab center, my doctor told me that I would be discharged in another month. On my weekend passes I went with my sister to look for an apartment. John and I had moved in together soon after I dropped out of college. I was eighteen and he was twenty-one. We married a year later, in 1967, and I took his name. We set up house and I learned to cook and do laundry and clean. I was an experienced, if not enthusiastic, housekeeper, but this would be my first apartment on my own. Now the bed would be my bed. The possessions that had been ours would be mine to share, as I saw fit, with others.

I was starting to take back some control over my life. Where I would live, when I would move there, what colors to paint the rooms in my new apartment, who would come and go in those rooms. The organization of my life had been under the control of others for so long that the simplest choices seemed monumental. Was this what I really wanted, or was I doing it because someone else wanted me to; was I doing it because I was now disabled and had to do things a certain way, was I doing it because I was scared not to, was I really in charge, was this really mine to choose? Would everything be a compromise now? A half, or even less, of what might have been?

Over the last months, I had had no choice who visited me. All the people who had come to see me since the accident had been told about it by someone else, and they showed up during visiting hour unannounced, offering flowers or books. I imagine that my mother or my sister had called them, or Rick, Carol’s boyfriend, had. The only people I had told about the accident were the group on the roof, but that was just some of the details, everyone knew why we were there.

There was one friend I hadn’t seen in a couple of years. She was living in a small town in upstate New York. I knew she didn’t know what had happened to me; none of my other friends knew her. A couple of weeks before I left the hospital, late at night after everyone was in bed, I took a bunch of change down to the phone booth at the end of the hall and called Delia. I just plunged in and told her about the accident, about John and Carol, the outcome, the plan to leave the hospital soon, stay on in New York and go back to college.

I then said, “I’m OK, you know.” “What?” she said, letting out a gasp. “Oh yeah, sure, you’re fine. John

is dead. You’re fucking paralyzed, you’re in a fucking wheelchair, what do you mean, you’re OK?”

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“But I am,” I said. I woke from the nightmares, lived on the edge for a while, frail and

hurting, dopey from rounds of painkillers and the numbing bleakness of hospital life. The accident had taken some material worth from me. There were lumps and bumps and scars. A couple of my ribs were missing, and they had even taken my appendix just for good measure while they were in there rooting around for broken bones. But now, a few months later, I liked the same things, got outraged just the same, laughed at my sister’s jokes, and still hated Nixon. I was scared of going back out into the world, a world I knew would not treat me well, but I was hungry for it.

I laughed when Delia said, “You’re fucking paralyzed!” Everyone had been so nice, so tentative, like maybe I didn’t know what had happened to me.

If Delia could talk rough to me, I must be OK.

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2

Brave New World

One by one the rooftop gang disbanded as we were discharged to go back out to the world. Sex wasn’t all we had talked about. We talked a lot about reentry and how we would manage. None of us knew anyone else like us out there. We had gotten used to a place where disability was commonplace, at least for the patients, but it wasn’t like that elsewhere. Even at the hospital only a handful of the people we saw working there had disabilities: a couple of the secretaries used wheelchairs, a psychologist with foreshortened arms, a lab technician who used crutches. Were we now like them? Were we “handicapped”? What was that? What would it mean for us? What should we call ourselves?

Some of us would go back to the homes where we’d been living before, but most couldn’t. There may have been stairs, or other unnegotiable terrain. Some wound up going to their parents’ homes, at least for a while. Some of us needed help with the daily routines of life, and parents seemed the only option, and most of us no longer had the resources to live on our own. There were some so young they hadn’t left home in the first place.

Few of the places that people would go were fully accessible, and most of us used wheelchairs or walked with crutches or canes. Ramps had to be built, doorways widened, kitchen counters lowered. My friend Bob was going to wind up sleeping in the living room of his parents’ suburban home, the only space on the ground floor for him. He said he felt guilty about disrupting everyone’s life, and knew too that he would have no privacy there. Kevin would go back upstate, but didn’t know what he would do there. He and his girlfriend would move to the first floor of the house, once the ramp had been built and the bathroom renovated, but he wondered how he would get his wheelchair around the farm and into the barn. Sara went to stay with her father. She was walking now with a cane, and thought she’d be able to manage the few steps at the entrance to his building.

I spent two weeks at my mother’s house and then moved into an apartment in Manhattan that I had found while on one of my weekend passes from the rehab center. My mother would pay my rent and help me out with expenses, and the social worker at the hospital worked with me to

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secure funding from the state for college tuition, and for transportation to go back and forth to class. I won a small court settlement from the accident, and that helped ease the way.

Life was bound to be more expensive now. I didn’t think I could work the temp secretarial jobs I had relied on in Boston to earn money. Would they hire me? How would I get there or fit in those crowded offices? Into the bathroom? I certainly wouldn’t be hitchhiking anymore, and the bus and subway were inaccessible. I’d have to take taxis or buy a car. I could no longer live in a third-floor walk-up. Even the apartment I’d found, in a building that had a flat entrance, an elevator, and wide doorways, would need some work for me to be able to live there. I had to buy kitchen cabinets that could sit on the floor, and have a carpenter remove the existing counter and build a lower one that was open underneath so I could pull up to it, like sitting at a table. At that height, I could chop and stir, sift and blend. I had gone to enough of those cake-mix classes to know some of the tricks. The shower door in the bathroom had to be removed, and I purchased a sturdy plastic chair that sits inside the stall. When I take a shower, I pull my wheelchair alongside the opening, like parallel parking, do a push-up with my arms on the seat of my wheelchair, which lifts my bottom up, then shift my body over to the plastic chair, hook my arm under my knees, and pull my legs in with me. This is the same way I get into bed, onto the sofa, and into a car.

The building faced Riverside Park and the Hudson River, and I could see them and smell them, and feel the breezes off the river. I chose a bright pumpkin orange paint for the bedroom and various shades of violet for the living room walls and ceilings, with a touch of magenta on the mantle. The view, the smell, the breeze, and these manic colors would ward off my fear of being cooped up, of living a compromised life, of people seeing sadness in this place.

My mother was in the moving and warehouse business, and I made an excursion to her office way uptown to pick out some furniture from the storage area where they kept the goods people left behind. This was a business my mother and father had started in the 1940s, before I was born. My father died when I was eight, and my mother remained in charge of the company. Growing up, it seemed perfectly natural to me that women work, that they can be the boss and know what they’re doing.

I spent a lot of time at the warehouse when I was a kid, and then in high school I worked in the office during summer breaks. That day when I arrived to pick out my furniture, all the men and women who worked there, some who had known me since I was a baby, came out to see me. Each said hello to me, calling me Cookie, the childhood nickname that had

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stuck with me through adolescence, and here, apparently, even longer. People looked awkward and uncertain, like they didn’t know what to say to this disabled young widow. For my own sake probably more than theirs, as each person approached me, I smiled and extended my hand or reached up to hug the women who worked in the office with my mother. I said, “How ya doin’?” “Good to see you,” “What’s new?” This would be casual and upbeat, I signaled to them. I was here to pick out furniture for my new apartment. I was getting out of rehab next week. This was a good thing. You mustn’t feel sad.

I don’t think I convinced everyone. Particularly Mitch, a broad- shouldered, lumbering man, with doleful eyes and long ears, who drove one of the moving vans for the company. When I was little he used to take me for rides around the neighborhood in the red truck. One time when I was about five, I rode with him all the way up to the cottage my family rented for the summer. When we were almost there, he got lost, but I remembered all the roads, and showed him the way. Every single time he saw me after that he would laugh at how little Cookie had showed up the big truck driver. But that day, when he saw me seated in my wheelchair, his sad eyes held tears. When it was coming up to his turn to greet me, he took his cap off and held it in his big, rough hands. He came forward and patted my shoulder, murmuring something I couldn’t hear, but which I thought had the word “sorry” in it, and then he quickly moved away.

I went upstairs in the huge freight elevator with my mother and Pete, the warehouse man. We found a couch, a couple of bookcases, a dining room table that sat eight, a queen-size bed, and a desk. Pete pointed to the room where my stuff from Boston was stored. I was not prepared to think about that material yet. John was gone from my life, and in the last months there had been hardly anything around that proved that I had a previous existence, let alone that he ever existed. What was left of him was contained in that storage bin.

“How did the things get here?” I asked my mother, trying to sound casual.

“Pat and Susan packed up everything, and we sent a truck up there,” she said.

John’s mother and sister, then, had been to our house. Whatever dirty underwear was on the floor, whatever moldy food was in the refrigerator, they had to handle. Were there secrets they may have unfolded?

Were all of John’s things here, left for me to sort through, or had they given them away already? People do this all the time when someone dies, I thought, but the job seemed cruelly hard.

How had they gotten into the apartment? Did our nasty landlady let

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them in? Did she soften at the news of her tenant-victims? I felt beholden to Pat and Susan, and guilty, as I often did in those days,

for bringing so much pain on people. I was embarrassed that I had taken the risk of hitchhiking and they had to pick up after me.

Mitch and one of the young drivers showed up at my new apartment on moving day. They drove the red truck which carried the old and the new fixings for my house. One by one, my sister and I unpacked the boxes, and each one scared me. I wanted to look forward, not back. What would I see that would make me compare my life before to my life now, my body then to the one I now owned? I quickly put back in their boxes: the high heels I didn’t think I could wear anymore, the suede vest with the long fringe that had swung around my legs as I walked through Harvard Square, and the photos of me, and John, and Carol, and Rick, and one snapshot of all four of us, nonchalant, unfettered, standing on a beach on Cape Cod, our faces turned up toward the sun, assuming we could always be there, could always do that.

Over the next days, weeks, and years I would take all of these out of their boxes and the drawers I had tucked them into and revisit them, try them on, feel it all, but today I would look for the things that could bring me pleasure in my new life—my red flannel shirt, the hairbrush that made my scalp tingle, my camera, and the flowered dishes I’d bought at a yard sale.

John’s clothes were not there, but our collection of books and records and such was. His Howard Zinn and my Par Lagerkvist; his Frank Zappa and my Joan Baez.