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Reflection Paper About My Body Politic

Upon completion of My Body Politic, you will write a four-page reflection paper or generate a reflective project that summarizes the book and describes how the concepts discussed in the book are applicable to your future career.

For the reflective project:

The reflective project provides an opportunity for you to demonstrate means of action and expression using the universal design for learning guidelines that we discussed in our disability studies in education unit. You are encouraged to share a brief proposal of the reflective project idea with the instructor for approval and feedback. The goal of this project is to share a brief summary of both books, the themes most salient to you, and a reflective application for your future career. An example would be creating an infographic that includes images of places Simi traveled and people she met with descriptions her experiences, what you've learned from them, and how they apply to you and your future.

For the reflection paper:

In four double-spaced pages, please write a summary and reflection of the book and application to your future career.

Page 1 and 2: Provide a summary of the book and include the messages or themes from the author that were most salient for you.

Page 3: Describe an experience or person the author encountered that stood out to you and describe the impact on your personal philosophies and/or future career.

Page 4: Describe how the overall concepts, people, and experiences in the books apply to or connect with your future career.

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


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)



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.



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



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


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


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


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,


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


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


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,


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


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-


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


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.”


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


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,”


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?”


“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.



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


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


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


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.

I had Mitch’s young partner help me set up the stereo in the living room. We took two empty cartons and draped a tablecloth over them, to hold the turntable, and placed the small walnut KLH speakers on either side. In those days, that was a sound system. I picked out my favorite album, Otis Redding’s Live in Europe, and slowly turned the volume up until I made Mitch smile.

My mother had given me a portable typewriter for my recent birthday, my twenty-fourth. It had sat in its case in my locker at the rehab center. Maybe she thought that I would be able to write down all that happened as a way to help me through it. When the men brought my new desk upstairs and we positioned it in the living room, facing the river, I ceremoniously took the typewriter out of its case and placed it on my desk, along with a dictionary and other signs of serious endeavors. I was going to college, I had work to do. My sister and I made plans to go to a stationery store the next day and buy the paper, pens, stapler, paper clips—the list was long—


that would set me in motion. As night came, everybody went home except the woman who would be

living with me and helping me out for a while. I wanted her to go too. Francine had been my mother’s housekeeper, and her new position in my household was my mother’s idea. A large woman, she took up a lot of space. She had a hearty laugh that I could hear when she was on the phone, even when her door was closed and mine. I hated that I needed her there, handling me, fixing things, and protecting me, or at least so my mother thought, from danger. My mother paid her salary and my rent, and Francine’s big presence reminded me of that.

As Francine settled in for her first round of phone calls, I went to my closet and picked out an old shirt, a pair of underpants, and my favorite jeans, and placed them on a chair. I would put them on tomorrow and look like me again. But then I saw one of the long macrame belts that Carol had made for me. She had woven and tied it with her beautiful long fingers, and sprinkled it with shiny blue beads. Here I was in this strange apartment, but Carol wasn’t. I lost her. I misplaced her. I misled her. Was it me that had urged her to go with us to Washington? I couldn’t remember. And where was my John? I want you to be alive, to breathe like I’m breathing, to feel.

I came out of the closet into my orange bedroom. With the night and soft lighting it had a warm glow, not like the garish Day-Glo of afternoon. I practiced. “This is my room.” “This is my apartment.” “I live here.” It would take years until I felt it was so, felt that I was in charge there. I brushed my teeth, put on a t-shirt, and called Francine to help me take my back brace off and lift my legs so I could get into bed. I had to wear the brace to support my back when I was sitting up, I couldn’t get in or out of the damn thing myself, and I had been told not to move too vigorously until my back was stable.

Francine and I were to cohabit for several months, until I no longer needed the back brace and could move more easily. I soon learned, though, that we had a common goal. She wanted to go out at night, and I wanted her to go out too. Friends could come over or they could pick me up and we could go somewhere, and I didn’t have to tell Francine, who, I was sure, told my mother everything I did, and what my mood and my appetite were. At twenty-four I was again playing the adolescent games with my mother that I had left home six years before to get away from. Then, I had packed some things in a shopping bag and walked out in a huff, dropping out of college to live in the East Village. Now I needed her and I felt so much for her, and so guilty for all she’d been through because of me. I knew that she worried about me, and was even more uncertain how to keep


me from harm. Sometimes I saw her and her face was sad, with lines drawn in from all those long hard days watching me struggle. Yet I groaned at the weight of her concern and did everything I could to evade her gaze. I knew that if I at least seemed to be doing well, it would release her from worry.

I didn’t feel afraid, at least consciously, of physical harm. I had survived the trauma, and each day I was getting stronger and doing more. Unpacking a box of books myself and organizing them on the shelf. Cooking for friends who had always brought me food in the hospital. Deciding whom to see and when. I still couldn’t bend over too far, or twist, or lift or . . . walk. When that thought stalked me, I ducked it, sought refuge at my new desk, sharpened my pencils, made a phone call. I distracted it, until it rested off on the side. I became adept at such evasions, too adept. I even found clever ways to have outbursts about anything but my losses, to suffer the pain of others.

Over all these months, Rick had kept my cat, Poozle. The first weekend I spent in the new apartment, he brought her down to New York. They arrived late at night. I told Francine I would get the door. I heard Poozle’s meows out in the hall even before the bell rang. Rick carried the travel case in, set it down, and opened it. Poozle crouched down in the case, whimpering and squeaking. Slowly she rose up, put her paws on the edge of the case, and scanned the place. She set one paw, then another, on the newly polished floor. I sat there, poised above the surface she touched. My own feet don’t touch down, they sit up on foot rests five inches above the ground. I watched how her paws splayed out on the cool surface, and I could feel in my mind the sensation of toes on wood, heels in wet grass, and the balls of my feet touching down in hot sand.

Poozle circled the room, checking behind the couch and under the table. She pawed open a closet door, and walked right in over the shoes and stuff on the floor. She sniffed her way through the kitchen, the back bathroom with the litter box I’d put out for her, and the pile of boxes still in the living room. I sat there watching her, tears streaming down my face. Rick stood behind me, his hands on my shoulders. Everything that was significant about this moment he understood. That she wouldn’t come near me, that she walked and I sat, and that she was still there after so much else was lost. When Poozle had made her full rounds, she walked right over to me and rubbed her body across the wheel of my chair, just like she used to rub across my leg when I was standing, only this time she threw her head back and let out a piercing yowl. I reached down, scooped her up, and buried my face in her neck.


Rick spent the night. With me. In my bed. He had been visiting me in the hospital and then at the rehab center. At the center, when we were finally alone in a dark corner of the roof, we talked softly, all four of our hands held tightly together. During the months that I was there, he would drive down from Boston whenever he could, and bring me presents. We’d go out for coffee, or to a park nearby, and sometimes he would come upstairs and hang out with the gang on the roof. I was too scared at first to realize what this meant, to understand it as romance.

It seemed natural that he should be there in my new home. A lot of it was familiar to him. He had sat on the chairs many times, he knew the Jimi Hendrix poster that had hung in the kitchen, and now was over the mantle, and he had listened to the records on the very same stereo. There was a different bed, though, not the one John and I had shared. Someone had decided, my mother-in-law in Boston or my mother here in New York, not to send it ahead to this new house.

Rick started to come down from Boston for one or two weekends a month, and then, as summer came, more often. We went to the park across the street. We went to the movies. We went up to Broadway and bought vegetables, and cooked them up in my new kitchen. There was a steep hill getting to Broadway, to the grocery store, and Rick had to push my chair to the top. Coming back, I could speed down, out in front in the race to get back home. And we made love. After the first trial runs, it was not as complicated as it seemed it would be. There were awkward moments, sad, lonely moments for me when I felt ashamed of my crumbled body and my unwilling legs. The free spirit in me fought with the embarrassed me, each winning some of the time. Over time, though, I learned that the parts fit like they had before, and the pleasure was the sweeter after the long absence and for the tenderness and love we found with each other.

Those were the moments that seemed innocent of our shared history. Moments when it felt like we belonged together, not just that we had been thrown together by circumstance.

The first couple of months I was home I had to go to the hospital every day for physical therapy, but right after that I started classes at the New School for Social Research in Greenwich Village. The first semester I began with a French conversation course and Intro Psych. It went well enough, and so the next semester I took a full load. I was going there three or four days a week. A taxi service used by the state agency that was funding my education picked me up at my house and delivered me to the school. The drivers were experienced in these matters and handled my wheelchair easily, and gave me a hand getting up the curb and into the building. The


main building had no steps going in, and there were elevators to most of the classrooms. On the third floor, there was an overpass that extended across an interior courtyard to the other building where classes were held. I found only one bathroom in the school that I could enter easily and, with some maneuvering, get to the toilet. It wasn’t an official wheelchair stall, and it wasn’t deep enough, once my chair was inside, for the door to close. When women would come and go, I just sat there, exposed, as they stood around talking or fixing their hair or sneaking a smoke. As unpleasant as it was, I always hoped my classes were scheduled near that bathroom.

One semester I had an early-morning class scheduled in a room in a back section of the building usually reachable by one set of steps down and then another, a few yards away, of equal height, back up. I found out from the security guard about an alternate route using the back elevator that bypassed the first set of steps. So when I came in the building in the morning, I first had to find the maintenance man who could work the back elevator. Then, when he left me off at the floor, there were still ten steps to get into the classroom. The solution that the teacher offered was that two of the male students would carry me up. So, when I arrived on the floor, I would wait at the bottom of the stairs till I got someone’s attention or until someone showed up for class, then they would find the two lifters, and with one at the front and one at the back, heft me up the stairs. When it went smoothly everyone appeared congenial, but some days I was late, either because the car service hadn’t shown up when it was supposed to, or because I couldn’t find the man to operate the elevator, and then when the teacher noticed that I was waiting at the bottom of the steps, she would stop the class and instruct the guys to put down their pens and come down the stairs to carry me into the room. The other students turned to the back of the room and watched it all. The teacher never offered to have the class moved, so I assumed she liked that room and wanted to stay there. And I was inexperienced in these matters and felt guilty asking people to move because of me. I absorbed the awkwardness and unpleasantness, because to protest it, I thought, would be making too much of my disability.

I made a few friends, and we’d meet after class to hang out and to study together. The only outdoor space in this city school was the inner courtyard, a pleasant enough spot. From the main building, there was a set of steps down to it, but from the other building the way was flat. If we decided to go to the courtyard after class, I’d tell everyone to go ahead, I’d meet them there. I didn’t want my friends to have to go the way I did; it seemed to call attention to how hard things were for me. For me to catch up with them, I would first take an elevator in the main building to get to the overpass to the other building. I’d go across the bridge, look down, and


see my friends already outside. Then, in the other building, I’d wait for the elevator to go down to the first floor and out the big door to the courtyard. Sometimes I would need to make a detour in that route to get to the bathroom on the fourth floor, and that would require waiting for one more elevator.

I always tried to appear upbeat; I guess I was trying to convince people that disability is no big deal. Also, I learned that if I said out loud that I was angry that there was only one bathroom I could use, or that I had a class scheduled in an inaccessible location, people would look sad and say things like: “Oh, that must be so hard,” “Oh, how terrible, you must feel awful.” But it was more complicated than that. They felt sorry, I felt angry.

It was 1972 when I went back to college, and in the two years I spent at the New School, I was just feeling my way with the disability thing. I hadn’t yet learned how to raise my voice about the discrimination I faced or to look outside my own personal solutions (or struggles) to try to change things. There was a dean I recall, who was very nice and offered help, but anything I asked for seemed to be for me, not for a wider purpose. I felt alone in it, and it seemed the honorable thing to bear my burdens silently. The stink that I had been making about the war in Vietnam had to do with broad political issues of national importance. I could articulate how race and class played a part in who was fighting and who was not. I could make a case for the illegality of U.S. aggression in Vietnam. I knew of the lies and the cover-ups. I knew who was at fault.

Here, though, it didn’t seem to be anybody’s fault that a doorway was too narrow, or there were steps, or there was no way to use public transportation; these seemed to be just facts of life, random incidents, not governed by any principle. The size and shape of things appeared to be fixed and unchangeable. I had a feeling it could be different, but didn’t know where to begin. I was having enough trouble just getting around, figuring out each step in my complicated life, and I couldn’t see beyond that. I think if there had been other disabled people around, I might have recognized that they were entitled to get on the bus, to get to class on their own, to use the bathroom, and to have teachers provide reasonable accommodations in the classroom. I would have felt outrage on their behalf, and then, by extension, for myself.

The trips from home to school in the chartered car service were, at least initially, my major outings. But soon I started to move out in broader circles, going to the movies, my friend Judy’s house, my sister’s, my mother’s, downtown for some shopping, going with Rick to the Village for music, the Mid-Manhattan Library, the museums.

When I left rehab, I got a bright, new, shiny chrome wheelchair.


Compared to the lightweight, manual model I use today, which is sleek and black, the old chrome models looked clunky and were harder to push. They look like the wheelchairs you see in hospital corridors and at airports. I chose brown Naugahyde rather than the hospital-issue pale blue, and figured out that I only needed to use one of the metal side pieces (like armrests on an armchair) which frame my lap. I made no other modifications to the chair, nor did I decorate it the way some do. No decals or orange plastic reflectors. The chair had for me a purely utilitarian function.

When I went down the street in this machine, wearing some of my clothes from the “before” era, the people I would want to take an interest in me ignored me, but the stiff upstanding ones, the sort who used to bristle at the sight of my hippie rags, Janis Joplin sunglasses, and wild frizzy hair, now would go all soft at the sight of me, and bend at the waist to breathe their kindnesses on me. “Oh, I admire you so much,” they clucked. On any given street, a woman was bound to come through the crowd to coo: “What a brave girl you are.” And she would mean well, of course. Some days I would hear my favorite: “Oh my dear, what a shame, and you’re so pretty, too.” The logic of that was so incomprehensible I could find no way to refute it.

I felt bowdlerized, expurgated; the juice drained out of me. No matter how rough I looked, they saw me as smooth and clean.

But the interesting others, the happy hippies, loping along to some party or other—the woman with arms full of books, in denim overalls and sandals; the guy in tight jeans and a leather vest, carrying a load of lumber to his red pickup; the tall gray-haired woman, wearing copper jewelry and a long flowing skirt—those people would pass me by. Some people on the street did stare, of course. If I was up to it, I’d stare back, and they would look away, or, to compound the insult, they would mistake my glower for a plea for help and come to my rescue.

When I was on the street, I rarely stopped moving. I found that if I did stop, to look in a store window, or just rest my arms, someone would come up to me and ask if I needed help. Even if I was going along, pushing my chair, and I would casually look at someone, or smile, they would rarely just nod, or smile back, or say hello, but instead say: “Do you need a hand?” or “Can I help you?” If I paused anywhere near a street corner, a man or a woman might come up behind me, take hold of my chair, and start to push, saying, “Here, I’ll help you across the street.”

I tried to shift my behavior so people would leave me alone. I’d sit up tall, push my chair with authority, try to look like I was fine, not in need, not in jeopardy, but I was always being read that way. The dilemma was


that I did need help with some things, like getting across the street or into a store that had a step outside. In those days it was extremely rare for there to be a curb cut on the street corners. Without them, I would have to stop someone on the street, explain how to tilt my wheelchair back, take it down the curb, and lift it back up on the other side. I found, though, that if I had the chance to pick someone out, rather than go along with the unsolicited offers of help, I could decide when I was ready to go across, and I could pick the person who seemed most likely to do it without fussing over me. Then, as now, many of the people whom I do ask for help are easygoing and take to their task with good humor. I explain what to do, they give it a try, I get to the other side, and we wish each other a good day.

Time passed like this for a couple of years. I was doing well in college, excited about it, and making new friends. I was healthy and strong. Without my back brace I was lighter and less constrained. Francine was there only three afternoons a week, and I had to do a lot more work just to manage the house. I continued to work out in physical therapy and later on my own, and I developed my arm and wrist muscles so I could push my chair up the hill to Broadway, shop for food, bring it home, and cook dinner without help from Rick, Francine, or, most important, my mother. I was getting As in my psychology and art history courses. For one course, I nixed the usual library research paper and went the extra distance to write on a hot new exhibit at the Museum of Modern Art. I liked being there so much, I went back several days in a row and interviewed the guards and incorporated their opinions of the paintings into my paper.

Rick and I took a couple of trips. We visited my cousins in North Carolina, and then went for a week to Virginia. One of the motels we stayed at had a pool right outside our room. We were sitting outside in our shorts eating sandwiches, and Rick spontaneously scooped me up out of my chair and jumped into the pool, convincing both of us that I could float. When he let go of me, I turned over and my new strong arms began to paddle. At first, little puppy strokes, just to keep my head above water, but then I put my head down and my right arm lifted, reached and scooped, pulling back as the left thrust forward. One after the other. My body rose up to the surface, my legs followed, and I was off across the pool.

We took one trip to Boston to attend the wedding of my friends Sam and Jane. They had visited me often in the hospital, had helped me move into my new apartment in New York, and I was so happy they were getting married and that they wanted me to be there with them. I was scared for many reasons to go to the wedding. We managed to lose the invitation with the directions and time on it, and so we arrived late, causing even


more attention to be drawn to us. We even missed their march down the aisle, to the Chambers Brothers’ song “People Get Ready.”

Sam’s older brother had been John’s best friend since grade school, and I hadn’t seen or spoken with him or any of John’s circle since the accident. I would be arriving with Rick, everyone would know about Rick’s loss and mine, but I didn’t know if anyone would know what Rick and I were now, to each other. I had bought a long purple dress for the wedding, that was, I thought, a bold statement of the new me. The me that was living in New York now and more mature than the hippie chick I had left behind in Cambridge. It was a sleeveless dress, with a plunging neckline. It revealed cleavage, and it also exposed the long scar that runs down my right arm, from my shoulder to just above my elbow. I rarely showed that scar in public in those days, and I don’t know why I chose to do it there, when so much of me was already on display.

I did want to look sexy, and for them to see Rick as my boyfriend, lest they think I was no longer capable of being someone’s girlfriend. Yet once I was there, it seemed rude, a slight to John. I wanted them to see I was OK, lest they feel sad for me. Yet in that setting, it seemed disrespectful. I hadn’t anticipated just how many people I knew would be there and how strange it would be for Rick and for me. We were both barraged with people’s condolences and their feelings of grief. We were at a wedding, people shouldn’t be looking sad, people should be paying attention to Sam and Jane. I was embarrassed.

The next day, before driving back to New York, we went to the cemetery to visit John’s grave. It was just over a year since he died. I cried so hard, I could barely see. I was relieved that I cried that much. I knew then that I missed him. That I hurt. I hadn’t yet cried just for him; I cried when things piled up, when it was all too much. He deserved this, and I felt closer to him than I had the whole year. A year in which I had to forget a lot of things in order to concentrate on how to make my life over.

Rick walked away and left me there for a little while. I stared at the ground. I remembered that John’s mom had said that they buried him in his favorite bell bottoms and flowing white cotton shirt. With my eyes, I traced his body in the dirt. I started with his long, brown, kinky hair, his high cheekbones, his thin, tight body, and sought to remember the shape and feel of his hands.

I had an impulse to wave goodbye to him. To say: “I’m going home now, back to New York.”

More and more I seemed to absorb disability. It’s not that I was at ease. My mind darted about and I was rarely calm, but disability seemed, even


in those first few years, a given in my life. I sometimes felt sad not to walk or run or dance, but I didn’t argue with it, or bemoan my fate, or desperately look for cures. My frenzy, it seemed, was about making it on the road I was on. I did fear the collapse of my social world and worried most that I would fail at my plan. I had decided to go back to school and told everyone I was going to be a psychologist. Once said, I had to do it.

There was denial mixed in all this, I can see that now, but there was also acceptance. A recognition that I had been able to incorporate this massive bodily change and emerge a substantial person, not a flaccid or diluted version of me.

So I hurtled through my days, devouring each event, each class, each person I met. I couldn’t rest with it, though, and always needed more. I filled in the squares on my monthly calendar, obsessed with making more dates, more notes of people to call and things to do. Stopping scared me, going didn’t, or at least not as much. I did worry before each new semester, about how the students would react to me. Each social engagement seemed dangerous. Could I get in the door, go to the bathroom there? How would people view me? Could I pull it off—being a disabled person in a sea of nondisabled people, asking that nothing much be made of the fact, that we could all just get along and have a jolly time?

There were so many times, entering a party, a restaurant, or a grocery store, when people startled at the sight of me. People I’d never met sometimes got so exercised about it all, like I had fresh bleeding wounds all over my body and they must stop them up. If I was upbeat and outgoing, I was sure they saw me as putting on a brave front, as merely compensating for my pain. Someone was bound to come up and utter a long sigh, or tell me I was brave, or start pushing my chair across the room, uninvited. And, of course, it wasn’t everybody, usually just a few, and that’s what made me keep going out. I met many people who seemed to take me on my terms, who could ask what I had done that day or what my major was or what I thought of a movie or could begin a conversation with something other than “What happened to you?” or “Can I help you?”

I was in my twenties, and eager to meet people. I learned to make judgments about whom to move toward and whom to push aside, quickly developing the sorting skills of a seasoned minority group member. Of the people to avoid, there were the clearly hostile types, those who expressed annoyance at my presence in their otherwise pristine lives. Those who, it would seem, thought that people with impairments were best kept out of sight. The larger portion of the people to avoid could be categorized as the condescending, sympathetic, oversolicitous, intrusive, or anxious types. And though I developed mechanisms over time to deal with them, and


some tolerance for their foibles, it cost me a lot to go along with them. I tried to resist, usually by diverting them from their single-minded pursuit. Of course, I wasn’t always up to the task, and found myself smiling wanly as they clucked over me.

I encountered obstacles every day and new frustrations, people insisting on telling me what they thought of my sad state or people insisting that I was in a sad state and that I was to be commended for my courage in the face of it. No matter how I was feeling about life in general or my disability in particular, someone in the course of a day or maybe a week was sure to pronounce it a tragedy. God appeared in many people’s declarations either as an end point, a parting “God Bless You,” or as the premise of their thinking about my fate. Religion did not factor in my thinking about my disability or indeed anything. I was, from an early age, mistrustful of organized religion and its claims to guide people through rough times or be the premiere course of action and thought for people to follow.

While all of my grandparents had been observant Jews, my parents didn’t pay much attention to things religious. In fact, the only time I remember hearing my mother talk about God was when she told me that my father had died. I was eight. She said, “God took Daddy away,” and went on to give a philosophical reason for it. Even at the time, I remember being stunned to hear her invoke God; it made her news seem even more unreal.

God as intervener hadn’t helped me then, and God as idea was not going to make one bit of difference in my life now. I saw the struggle in the details. If I left class and was waiting outside for the taxi service in the cold, God wasn’t going to make the taxi come any sooner or redesign all the buses whizzing past me so I could get on them. If it was a sunny day and there was an ice cream truck across the street, but no curb cuts on the corners, and I had to decide whether to ask someone to help me with the curbs, deal with the helper, find someone else once I got my treat to help me back to the other side, calculating whether it would melt during this transaction or should I instead stay on the other side till I finished and risk missing my ride—well, this just didn’t seem like God’s work. God wasn’t going to help me deal with the shame of my weak bladder or the old-lady swollen feet I get on a hot day. And as for comfort for the larger, more existential pain of my crippled state, the loss of John and Carol, and the trauma—I needed something more direct, more tangible.

I found Sarah, my therapist, when I needed her most. I had in these two years put together a life that had activity and direction. People around and places to go. It took all that for me to be able to fall apart.


It happened like this: A friend of mine, a guy named Vic, had been having a rough time. He was very depressed, had been fired from a job he liked and was scared he wouldn’t find something else. He was gay, and I think he was both exhilarated and overwhelmed by the club scene in the mid-’70s and all the men coming out so boldly all around him. He came to live in my apartment for a while after Rick went back to college. When Vic left and went to live on his own in a rented room, I became increasingly worried about him. He seemed to have no life in him, he wasn’t going out at night, and he made jokes about hemlock. Sure enough, one day I tried to reach him on the phone and the line was busy for a long time. I got the operator to check the line, and she told me the phone was off the hook. I called the police, who bashed in his door, found him on the floor unconscious, and took him to Bellevue. I met them in the emergency room just as Vic was coming to and thanking everyone around for saving his life.

In the course of checking him out of there, into another hospital, and, a few weeks later, out of that one and into a third, I spoke with several psychiatrists. I was startled when I heard a doctor say that Vic was depressed because he was homosexual, and that the way to help him would be to cure him of this affliction, but that it would be a long and difficult process. I remember arguing with one pompous resident, holding my own in the conversation despite his assured manner and fancy jargon: He wasn’t to cure Vic of his homosexuality, I told the creep, he was to help him not be depressed anymore. I’d known him when he wasn’t depressed, but he’d always been gay.

There was one guy (they were all men) who tried to reason with me, and gave me the benefit of the full extent of his knowledge. He knew I was studying psychology, and I think he believed he was doing me a favor by giving me this extra private lesson. He carefully explained that Vic’s homosexuality was a product of Vic’s domineering mother and passive father (he had it backwards), that it was evidence that he had not reached full maturity, and that finding love and companionship with a woman would be the answer to all his problems.

I had the sense that the doctor was sizing me up—would I be able to deliver the cure? He didn’t seem to think I could do the job, because he looked me up and down and said, “Well, not you, of course,” but asked if Vic had ever expressed interest in any of my friends. Afterward, I took Vic to the back of the visitors’ room to relay this little talk we had had. We laughed till tears were streaming down our faces, and a nurse came out of her office to shush us. When we calmed down, we went to his room and wrote a dark and dirty little story that we called “The Paraplegic and the


Fag.” Now that was therapeutic. Despite the doses of bad medicine he received at these hospitals, Vic

started to come back around, and several months later he was back in his own apartment, employed, and in a relationship with a very sweet man.

What a tumultuous time this was for me. I was so glad to help Vic, and also pleased to find that I understood a lot of what was going on. I went with him to speak with doctors and social workers, and took care of things he wasn’t able to handle. When I had been the patient I wasn’t able to do much of that, nor be as insistent as I was here, and it all gave me confidence in myself. While I had already learned a great deal about the power relations between patients and doctors, this was a vivid new lesson. I saw how these doctors attempted to reach into Vic’s sexual life and turn it into a medical condition, complete with diagnostic codes and pathological indicators. I told them they were wrong, and the telling felt good.

Yet as I checked Vic in and out of each hospital, brought him a new toothbrush, spent time there visiting with him, and meeting the other patients, I became increasingly disjointed and morose. I had been hanging on, dealing with all that was happening to me, moving fast, but not really talking to anyone. In the last few months Rick and I had broken up, and I was trying to prove myself as an adult, as a woman, as a student. I saw Vic and all the other sad strangers shuffling around the Day Room in their baggy clothes, and I got scared I would wind up there.

That’s when I found Sarah. I asked friends if they knew a good therapist, and the ones that they

suggested all had inaccessible offices. I scheduled a couple of appointments with others I found, but there was no one I wanted to talk with. My biggest fear was that I would start working with a therapist and would find that underneath her professional accepting veneer she would be like the people on the street that I loathed, that she would see me as an unfortunate. An object of pity. She would make me smaller, not bigger.

I don’t know what it was that turned me off to the first few, I just ran. Maybe I was afraid of upsetting them, telling them my saga, as I had been afraid of upsetting my mother by talking about my father after he died. When my father died my family went on as if nothing had happened. My mother never talked about it, and I always felt that I shouldn’t either, it would make her sad. When my grandfather died a year later we did the same, and so I learned to bury loss inside me.

One therapist I saw was a disabled woman that someone recommended. Before I even met her, I felt protective of her. I was nervous too that all we would talk about was disability. While I worried that the nondisabled


therapists would be overwhelmed by my disability, and not be able to see the perspective I put on it, I feared the disabled therapist might be so focused on my disability that she wouldn’t see the whole me either. I saw her only once.

By the time I went for my appointment with Sarah, I had done this enough, and I dreaded going through the recitation again, saying all that had happened, and then leaving. I began in rote fashion, giving her the basic outline of the accident, John, Carol, etc. I didn’t see the need to go any further back than that. I told her that I’d had a hard time with my mother growing up, and still did and I needed some help with that, but my father, well, he died when I was eight, I don’t really remember him, I said, so he wasn’t the problem. Except for the stuff with my mother, I had been fine before the accident, I told her, and then my life got derailed, and all these terrible things happened and that’s why I’m here. I ran away from home when I was eighteen, dropped out of college, got married, wasn’t doing anything with my life, but I had been just fine, fancy-free, unencumbered.

I slowly began talking about my present life, about men and relationships. “Rick and I split up,” I told her. “We had too many sad things, too many things to break free of.” I did tell her I missed him. “But,” I said, “I’ve got a career now, I don’t want to be tied down to anyone or anything,” and, as I said it, I doubled over, my head dropping on my lap, my arms hanging down, draped over my legs, and I started to sob. Sarah got up from her chair, put one arm around my shoulders, and patted and soothed, patted and soothed, till I stopped. I remember her saying, “Talk through your tears,” a phrase I would hear often.

So I began to talk to Sarah. Two or three times a week. She dug deep, but always shored me up, patted me down before I had to go back out on the street. For years, I would come to her office, slide out of my wheelchair, and lie on my back on her brown leather analyst’s couch. She sat behind me taking notes, asking questions now and then. Sometimes she would make suggestions about how to look at something in a different way. Sometimes we argued. Even when we did, I knew she was on my side.

When I found Sarah, I found someone who could bear my weight, and I leaned on her.



Coming Out in the West

My mother was looming much too large in my life. In her worry that I would get hurt again, she saw danger in everything I wanted to do, from learning to drive a car to going back to college. I overheard her say to a friend, “We have to give Simi the feeling that she is independent.”

There seemed to be no part of my life she didn’t touch: She knew all my friends’ names and phone numbers, my class schedule, where I had been for the weekend. She would sometimes drop packages of food at my house, because, as she would say, “I know you’re having company.” I was twenty-seven and had reverted to lying and acting out as a means of keeping some distance between us.

I got the idea to leave New York for a while. I told Sarah first. “Berkeley, I’ll go to Berkeley,” I said, making it up as I lay there on her analyst’s couch, gazing up at the pale yellow ceiling. “I’ll spend the summer, take courses at the university, try it out. There will still be hippies there, and I will be at home among them, recapturing the ’60s.”

I don’t think I said out loud that I hoped they would recognize me as one of them, not just see some woman in a wheelchair.

Within a week, the trip was scheduled and airline tickets purchased. A few clothes and books were selected. Travel light, I told myself, and let your California self emerge.

I contacted the disabled students’ office at the university for help in finding an accessible apartment near the campus. The request seemed natural to the woman I spoke with; she did not startle when I said I was in a wheelchair, and asked me some practical questions, like “How wide is your chair?” which reassured me she knew what I was talking about. She found a place that had no steps going into the building, and doorways that were wide enough for my chair to get through, but warned me that the bathroom and kitchen were very small. I also located a place to lease a car with hand controls for the summer. These arrangements for the apartment and the car were the only concessions I made to my disabled state, and I took pride in how few I had to make.

Each thing I could do without accommodation, I reasoned, indicated how unfettered and normal my life would be.


I began to let people in on my plan. I practiced a nonchalant recitation of the facts. It was no big deal, I would project, for me to get on a plane, move to a strange city, and make it on my own. I can go anywhere, you see, I can do everything.

A friend in New York who used to live in Berkeley said to me: “It’s different out there. There are a lot more handicapped people, it’s like a center—you’ll really like it.” I brushed that comment off, it was not what I was looking for, and when I told friends about the trip I didn’t tally that in my list of reasons to go there. People might think I did everything because of disability, that it ruled my life.

I saved the hardest recitation for last. No need to tell the family until everything was in place for the trip. Resist all offers of advice or visits “to help you settle in.” Turn down a ride to the airport. “All planned,” I said. I wound up accepting the money that was offered, since I still hadn’t figured out how to earn my own.

I craned my neck to look out the window as my plane was landing in San Francisco. I had been in my seat for almost six hours. My chair was down in the luggage hold in the belly of the plane, and I was beached here, my legs unable to lift me up and carry me away. A simple act, standing, walking two or three rows down to the bathroom, going in, turning around in that tight space, and closing the door. An impossible act. I could no more walk than I could fly. At times like that, I long for my chair. I’ve never fully understood why I don’t pine for my legs instead. I can’t explain why, even so early in the game, I let go of my walking self. I never chased after cures, it was so clear these legs would not hold me up.

Even my dreams, at least the ones I can recall, don’t reveal to me an underlying longing for my lost walking self. There were recurring dreams in those first few years where my body would suddenly rise up and take off, but it was always in an implausible act, like floating above ground or ice-skating down Broadway. And while those moves may be mere substitutions for the act of walking, those dreams were optimistic; I’d wake up feeling hopeful, not jarred by the reality of the morning’s paralysis. I felt that in this body I could accomplish what needed to be done; I needn’t wait for a walking body.

The dreams that debilitate me are the ones where I am frightened and in danger, and when I open my mouth to scream, no sound comes out. I am helpless to save myself at night, and the fear lingers into the day. In my dreams, it is the inability to shout out, not the inability to walk, that defeats me.

There, in the airplane, I couldn’t shout out. What would I say? That


they should have a little chair on board, so I could get in it and go to the bathroom? I didn’t even imagine that. The airline wouldn’t go to all that trouble for me and the few like me who need it. It would take years for that to happen, and a federal law to mandate it. In those days, you just had to tough it out. I hadn’t had anything to drink for many hours and had taken a pill that I use to keep my bladder in check. Fortunately, it had worked. I distracted myself by watching the skyline come and go as the plane banked. The dark green trees and the brown hills that surround the city had an exotic look. A slice of the gray ocean appeared, disappeared. A rocky cliff. The flat bay. Parallel rows of houses rode the crest of a hill, streaming down one side and disappearing into the valley.

I had only been to California once before, when I was nine, a trip to visit family in L.A. with a promised excursion to Disneyland, all given as salve for a sad little girl whose father had died a few months before.

So this view was all new, and I was excited about it, but I couldn’t afford to get excited just then. My bladder couldn’t be jostled, not one little bit.

I watched all the passengers get off the plane, silently urging each to move faster. Finally, an agent brought to my seat the small metal chair used on board to get me down the narrow aisle of the plane. I then transferred to my wheelchair, and he escorted me to the far end of the terminal where he assured me there was an accessible bathroom. Relieved, I was then able to focus on getting my three months’ worth of luggage and me into a taxi.

I got to Berkeley by late afternoon and found my apartment building on Haste Street, only about eight blocks from the campus. It was a little box of a place, with moldy beige carpet, and well-worn furniture, but I claimed it happily. The bathroom had just enough space for me to get inside, but I couldn’t turn my chair around, nor could I close the door. With considerable effort I could get onto the toilet from that angle, and I would learn to brush my teeth riding sidesaddle. The kitchen was no better, and I had to parallel park at the stove and reach my arm across to boil and fry, stir and flip.

This was an apartment designed for walking people, and in the course of that summer I would grow increasingly impatient with the effort it took to squeeze myself into their world. I found in Berkeley spaces designed to accommodate me, where I could fit comfortably and thus breathe more easily. Places where the provision of ramps, wide doors, grab rails in the bathroom stalls, and the like meant I could do things in the same place and in synch with others. These weren’t “special” places, set-apart places, but open, public sites. As time went on, I wondered, might I play a part in


reconfiguring the world to let me in? After sniffing out all the corners of my new space and unpacking a few

things, I went out to find a grocery store. When I reached the corner, I saw to my astonishment that there was a curb cut. All four corners had them. I whisked down one, crossed the street, and slipped up the other side. At the next corner, more curb cuts. Whoosh. Turn right, go a block. Whoosh. Another. Another. I was wandering. I never wandered in New York, where I calculated each move.

My new neighborhood was much lower to the ground than my block in Manhattan. There were mostly three- and four-story houses, and they exposed the more intimate details of life. I could see into living rooms and kitchens. People came and went, in and out of their houses. They sat on front porches and ate in their yards. The few low-rise apartment buildings teemed with students, and they moved about in groups of two, three, six. The young predominated in Berkeley, and I was ready to ride with them and catch up on my lost youth.

Each street offered something to look at: amusing lawn ornaments on patches of brown grass, ramshackle old houses with Victorian bric-a-brac, signs in windows declaring allegiance to the Green Party, or the Hemp Party, or the house party. Most of the houses had two or three steps to the front porch, off-limits for me, but on that first outing to the grocery store, I saw two that had wooden ramps going up the side. One of my kind must live there, I thought.

I had gone about ten blocks, zigging and zagging, when I found a store. It occupied the ground floor of a small apartment building. The front windows were filled with displays of paper towels and pyramids of canned fruit, a round tin Coca-Cola sign hung over the entrance, and little bells jingled against the glass when I opened the front door. As I pushed my cart down the aisle in front of me, picking out the ingredients for this new life, I realized that no one stared at me. Even the grocer ignored me. As the people had on the street. Might I be inconspicuous here? Could I escape people fussing and fretting over me?

The grocer packed my bag, and, when I asked, reached over the counter and placed it on the back of my chair. I put my sunglasses on, and donned the leather gloves I’d need for the push back home with the groceries adding extra weight to my chair. I swung the door open and went outside. But I stopped short. There on the corner, facing me, was a man sitting tall in a sporty black wheelchair. Wavy blond hair fell down his bare back. He wore only tattered jeans and leather sandals. He was not alone. Three women swirled around him, dancing and skipping. Each woman held a container of yogurt, and each, with gusto, was throwing handfuls of the


stuff at him. He answered them. He scooped up the cream from his naked chest and off his sun-burnished shoulders, and lobbed it back. There was yogurt in their hair, running down each and every chest, dribbling down one woman’s thigh, another’s forearm. It lingered in bellybuttons, between toes, and in the spokes of his wheels. White, wet yogurt pooled on his lap.

The women frolicked and romped on their long, nude legs. They leapt about on their bare feet. He swivelled his chair back and forth, doing a kind of wheelchair twist. He snaked in and around them, and they jumped to get out of his way. The California sun was streaming down on them and they were laughing to beat the band.

Maybe this was routine California street-corner fare. I seemed to be the only one to take notice. The grocer had stayed inside, and whoever else was out and about just walked by, as though nothing marvelous was happening. I stayed till the last minute, drinking it all in, and watched the merry band go off down the street, turn, and proceed up a rickety ramp onto the front porch of a brown house with missing shutters and twirling lawn ornaments.

Yes, I thought, if that’s disability, I can do that. He made it look fun and sexy. Not woeful and sick-like.

I wended my way back home through the Berkeley streets. My apartment was still and quiet. I put away my groceries, save for a bag of Oreos. I wheeled my chair up next to the sofa, put on the brakes, and slid over onto the ratty tweed cushions. I stayed there a long time, eating cookies and watching the sun go down. I had no one out there, no one at all. I hadn’t really talked to anyone all day, not even the yogurt people. I watched them from the sidelines, an interested observer, but they hadn’t even looked my way.

This seemed like the first time I’d ever really been alone. When I was growing up, I had family, then, for those brief few months, I had college roommates, and then I had John. In this new life-after, I had kept myself surrounded by people. I was always making plans, having people over, going out. Except for the hours with Sarah in her office, I mostly kept moving or working. In her office I could cry, I could be afraid, but she was there and she would somehow pull me along. Maybe this was why I had come out here, to face myself in a small dark room. With nothing to do, and no one to distract me, I could find out if I really was OK, as I’d been telling myself and everyone around me I was.

It was dark outside now. The sounds of rock music and cars going by on the street below began to break into my thoughts. Here I lived on the third floor, in New York on the seventeenth. I could hear people talking on the street. In New York I only heard the heftier sounds, like trucks and


buses revving up as the light changed, or jackhammers breaking up the street on an endless construction project.

I thought of the blond man in the center of a circle of frolicking nymphs. How did he get there? Where was he now? Was he OK? Not just today, afloat with the pleasure of the yogurt affair, but day to day, week to week, year after year. Could people like us survive? I had witnessed him laughing and carrying on. I had witnessed myself, over these last four years, going to college, making parties, making love, flirting, taking care of myself, and also, those other times, withdrawn and scared, when I had to struggle to rouse myself and move on. I had no guideposts for this life, no one who had done it before. He became my first mascot.

I yawned and stretched out on the couch. My plane had left New York early that morning, and I had dragged suitcases across my New York apartment and then this one, had gotten myself in and out of airline seats and taxi cabs, and then once I arrived on the Berkeley streets had pushed my chair further than I ever had before. I closed my eyes and lay there for a while, but I couldn’t sleep.

I demanded of myself that I get up and pull my denim jacket out of my suitcase. I prodded myself to find my keys and go out the door. I exhorted myself to keep moving. If I didn’t, I might not succeed at this California mission and be forced to go home, weakened by my failure.

This time when I left my building, I turned to the left instead of the right, heading down to the main drag, Shattuck Avenue, which I’d seen from the taxi when I first arrived. It was a long hill down, and I worried as I went how I might get back up, but I did not turn back and take an easier course. It was as if someone was always watching me, judging my capacity.

Once I got to Shattuck, it was flat and easy going, and it, too, had curb cuts on every corner. I passed some crowded bars and restaurants with clusters of people talking at tables, no one sitting alone. I would be conspicuous there. People would look at me and feel sorry for me. I chose instead an empty Chinese food takeout place that had a couple of Formica tables up front. My seat by the window showed me a good piece of the late-night Berkeley street life, and I could watch it, even if I couldn’t yet have some of it. My food arrived. The man behind the counter nodded appreciatively as I picked up my chopsticks with one hand, with the other brought the bowl up to my chin, and shoveled thick slippery noodles into my mouth. He seemed glad to be feeding me. His little daughter peeked out from behind a curtain and watched me too. Then the cat. I waved at them, and she smiled up at me.

I got lost in thought for a while, and when I looked up again, the girl


had disappeared, and the chef was busy in the kitchen washing the metal cauldrons and big woks of his trade. I balanced my bowl in my hand and picked off each vegetable, and slurped down all of the hot broth. What mattered most to me at that moment was that I hadn’t curled up in a ball on the couch in my new apartment, hiding out till daylight made it easier to get lost in the crowd.

As I paid my bill, and prepared to leave, the chef called to the girl, and she came out from the back to present me with a drawing she had made on a white paper placemat. Swirls of shiny Crayola colors tripped across the white bumpy paper. I leaned down so that we were eye to eye, and I thanked her. In a whisper meant only for me, she explained that it was a picture of the cat sitting on his blanket.

The next day I went up to campus. It was hard pushing up the hill to Telegraph Avenue, but then it was pretty flat, and I wove in and out of the crowds, and the vendors selling tie-dye and hippie beads. On through the main gates I had seen in a picture of Mario Savio leading a Free Speech Movement rally in front of Sproul Hall. An old boyfriend of mine was in that picture, up in front with Mario, and I had it pinned to the wall over my desk for years. The campus spread out before me, bigger than I had imagined, with imposing buildings and towering trees. After my years at the New School, housed in two buildings in the middle of a city block, this seemed like a real college, a permanent place of great authority.

I registered for a film survey course and a literature course. The next day I went to my first class, but fell asleep halfway through. I stayed awake in the other class, but stared out the window. I never bought the books or did any of the assignments, and withdrew after the first week. I wanted to be outdoors, on the streets, not indoors watching people, listening. It would be harder for me without these activities, without the regulated contact with people, but it made me feel like the trip was an adventure, not something safe and managed.

I went up to the campus almost every day anyway. I hadn’t returned my student card, so I could use the library or go to the student union and hang out, playing the role. Maybe I had come to Berkeley to get away from the constraints of my family, and to prove something, but I discovered a wonderful place, and I took pleasure in the parade of students and Berkeley characters who strolled around campus. There were even days, or parts of days, when watching satisfied me. Other times, when the delight of that slipped away, and it felt like depression would descend and lock me in the house, I wound myself up into a frenzy of activity, sailing about, losing keys, toppling over vases of flowers, calling people I barely knew, like the guy I sublet the apartment from, and asking him to dinner. He


declined. One day I was sitting out on the plaza, just inside the gates. A woman

who had been in my lit class saw me and came over to ask what had happened to me, why I had disappeared after the first week. She sat down on the steps next to me, and we stayed there a long while, watching the musicians and jugglers and such who played for spare change. She went to get us some coffee, and when she came back she found me talking with a group of guys from Oregon, waiting their turn to perform on the plaza. By the time they went on we were all fast friends, and my new chum, Barbara, and I cheered for them, calling to passersby to come and take a look.

That’s how I got to spend a couple of raucous weeks with a band of traveling street actors. They incorporated me into their pantomime of the imperiled Pauline tied to the railroad tracks by the wicked villain, and then saved by her brave suitor in the nick of time. Though I was the only woman in the troupe, I never got to play Pauline, she was played by one of the men in a frowsy blond wig. I was instead the train coming down the tracks at full throttle, my wheelchair outfitted with a bell and a cut-out cardboard panel painted steam-engine gray. I wrestled with this casting decision, fearing I was no longer damsel material. Ultimately, I triumphed, even though I was never Pauline. In enacting the train I got to show off, and to create a spectacle using my chair. All my efforts to that point had been to minimize the chair and the impairment that occasioned it, but those July afternoons on campus and in Golden Gate Park the crowd watched me come chugging out, ringing my bell and calling considerable attention to myself and my wheels. The audience could make of us what they would. And later, when it was my turn to pass the hat after the performance, if that ol’ chair caused them to cough up more change to fund the troupe’s dinner and evening revelries, so be it.

I spent nights with the young actor playing Pauline. I liked him more in his day job, helpless on the railroad tracks, but I wanted “bad” in my life as much as anything. It was part of what Sarah called my “counterphobic behavior.” Like driving way above the speed limit, picking up hitchhikers, and inviting rogue actors back to my house. I never did get hurt, but I posed a danger to myself and probably others as I gave myself almost daily tests of my invincibility.

Not listed on my California itinerary for that summer of ’75 was the lure of other disabled people. As my friend Susan had told me, Berkeley was indeed a hotbed of disability activism, and it was, as I had predicted, a hotbed of hippies. I was so wedded to a particular image of hippies, and to a particular, yet very different, image of disabled people, that it had never


occurred to me that they might share the same bed. Hippies were those with lithe bodies and keen eyesight; disabled people were crouched and bent, and too beleaguered for pot-smoking and free love.

The abstract category “disabled,” or in those days more likely “handicapped,” that I had grown up with carried over even when I got tagged to be on the team. Except for my Uncle Sonny, who had lost a leg in an automobile accident, I hadn’t known any disabled people up close. And anyway, he was just my uncle, he didn’t count. I thought them to be flat, reluctant people, not the sort to stir up the pot, to be juicy and interesting. I urgently hoped that I was all those things, and standing apart from the group, I reasoned, was my only way to prove it. I was determined to stay myself, this disability thing wouldn’t bleed me dry, I would remain the daring, crazy person I wanted the world to know. I would dress like I always had, only more so. I would go to California, live on my own, and get the lead actor in the troupe.

Berkeley may not have had significantly more disabled people than other places, but it seemed to. Maybe it was because I was out on the streets more than I was in New York. Disability appeared ordinary in Berkeley; it even seemed to have some cachet, some exoticism.

I saw people acting out the daily routines of life—going to the supermarket, school, or their jobs—using wheelchairs or crutches, carrying white canes, using sign language and all of the other indicators of membership. There was my neighbor, the large-breasted blond woman in the peasant blouse and dangly earrings, with the guide dog, and no dark glasses hiding her pale blue, blind eyes. At the health food store I’d often see a burly guy with a red bandanna tied around his neck. He was a friend of the owner, and hung out there a lot, sitting on a high stool by the counter. One of his legs, the shorter one, rested on the top rung; the other, straightened out, touched the floor and kept him balanced. He always greeted me with a big smile, like we’d known each other a long time. Then there was a very small, pert woman, always impeccably groomed, who used a motorized scooter to get around the campus. We never talked, she always seemed in a hurry. I also frequently saw a man, part of the vagabond crew that occupied the corner outside Cody’s Books on Telegraph Avenue. A scrawny guy with a lot to say, he held forth on the sidewalk, waving his thin metal crutches around for emphasis as he spoke.

These people were part of the Berkeley tableau. There was one, though, who stood out from the crowd. Seated, like me, in a chair with wheels. I met him on campus when we were both pushing up the ramp that leads to the cafeteria. We nodded at each other, an acknowledgment of our common bond. The ramp was wide enough for us to go up side by side,


look at each other, and say hello. As we hit the top, I reached for the door with one hand, held the rim of my wheel with the other, pulled back on both, and opened the door. He nodded again and smiled as he went by me.

On line for sandwiches, we invited each other to share a table for lunch. I had a good time. He teased me about my New York ways, but his generous smile told me he liked me just the same. Our talk rambled. Movies, the courses I had dropped, his work—he constructed wooden models for an architectural firm. I told him that seeing all these disabled people in Berkeley was startling, that it was very different from New York. It was the first time I’d said that out loud. We talked some about disability, not our bodily states, but the way people stare at you, the inaccessibility of most of the campus, that sort of thing. He told me about the evolving disability rights movement, something I’d never heard of and, at first, didn’t quite understand.

Philip, his name was, and he had a wry take on the peculiarity of our lives. He described dealings with nondisabled people that were so similar to my own experiences, I thought we must be running into the same people.

I thought about him for days after our lunch. Meeting a disabled man head-on, and being attracted to him, confused me. I had grown up thinking that disabled people are the unfortunates of the world. While I refused to believe that I was an “unfortunate,” and I did everything I could to keep people from seeing me that way, I hadn’t fully let go of the idea that others were suffering, and that their lives had fixed boundaries and held few pleasures. Yet Philip couldn’t be one of them, he was too much like me, and so I had to exempt him too. But then, what about my neighbor, the blind woman with the cleavage, and the smiley guy in the health food store, the gorgeous blond yogurt tosser, and my friends from the roof at rehab? Maybe I was like them, and they were like me, but we were not like we were supposed to be.

Unsure of where I was heading with Philip, I drew in closer for a better look, stopping by the coffeehouse he’d told me about that was right next to his office. But then, when I did see him again, I balked. I had a vision of both of our wheelchairs, side by side at the movies, across from each other at the kitchen table, parked at night on either side of a king-size bed. I feared that “we” would double the jeopardy, and I would lose my footing in the nondisabled world. Even out here in California, with no one around I knew, little risk that anything would be permanent, I got scared to even make a date. Told him I was going to Oregon for a while. I say now with much shame and with regret, that I ran from him much like some men have probably run from me. Worried I’d be a burden, worried that it would


be strange to have sex with me, worried about crossing over into the land of the other. Anticipating everything before knowing a thing.

Throughout that summer, I moved tentatively toward various disability encampments. I remember the first time I visited the disabled students office at the university. It was off-campus in one of the low-slung cement buildings that line the side streets off Telegraph Avenue. Down a driveway and around back was a long, steep ramp that I could barely get to the top of on my own steam. When I came in the door a vague collection of lean young men were sitting around a table, not doing much of anything. They were dressed in the lighter shades of denim, accented by black and brown leather belts and vests. Most of them were quads (quadriplegics), who had, even back then, souped-up motorized wheelchairs. These guys might eventually be cast as extras in an Oliver Stone film, but on that day they were unoccupied. No one seemed to register that I’d come in the door, and only a couple of guys nodded to me when I gave a big chirpy hello to the assembled group.

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