Cover

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pp. 1-1

Title Page, Copyright, Dedication

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pp. 2-7

Contents

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pp. vii-viii

List of Illustrations and Tables

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pp. ix-x

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Foreword

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pp. xi-13

The Milbank Memorial Fund is an endowed national foundation that engages in nonpartisan analysis, study, research, and communication on significant issues in health policy. The Fund makes available the results of its work in meetings with decision makers, reports, articles, and books....

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Acknowledgments

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pp. xiii-xiv

This project involved many people, to whom I am very grateful. In particular, all the 119 persons who were interviewed for this project gave generously of their time, answering virtually every question without demur. Many of them welcomed me into their homes or traveled to my office. This...

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Preface

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pp. xv-xxii

Before a meeting in Washington, D.C., five springs ago, I hurried to a back room to use the telephone, but a man was already there. We recognized each other immediately. “It’s been twenty years,” I said. “You taught that wonderful course on living with illness. It helped me decide to go to medical...

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1. MOBILITY LIMITS

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pp. 1-9

One Christmas my husband and I went to an exclusive shop downtown to buy my father a tie. It is one of those stores where you feel scrutinized by security cameras even if you do not roll in on a battered old scooter held together by bright red airline baggage tape. The saleslady eyed us with...

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2. WHO HAS MOBILITY DIFFICULTIES

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pp. 10-22

How many people have trouble walking? It’s hard to tell from simply looking around. Even just three decades ago, many people with difficulty walking were “somehow made invisible and kept isolated from the rest of the world” (Zola 1982, 95). Nowadays, high-profile celebrities roll in their...

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3. SENSATIONS OF WALKING

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pp. 23-46

Most people walk without giving it a thought. Their legs automatically and painlessly obey the myriad impulses zipping to and from their brains, moving them effortlessly at will. These complex commands and compliant responses do not penetrate consciousness until something goes wrong....

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4. SOCIETY’S VIEWS OF WALKING

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pp. 47-65

“Lena Walks!” my sister announced excitedly on the subject line of her e-mail message. Her little daughter had astonished parents and daycare workers alike by taking her first independent steps at eight months. After initial forays, she retrenched and resumed crawling, but that was too slow....

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5. HOW PEOPLE FEEL ABOUT THEIR DIFFICULTY WALKING

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pp. 66-82

Many years ago, when I still walked with one cane, a close friend took Reed and me to her new boyfriend’s house for dinner. We’d heard good reports about this fellow and wanted to like him. Such meetings are often awkward, and after several forays, conversation finally focused on travel. The...

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6. AT HOME—WITH FAMILY AND FRIENDS

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pp. 83-104

One night several years ago, a familiar driver picked me up in his wheelchairaccessible taxi at Boston’s Logan Airport. He had immigrated from Afghanistan and wore traditional garb—colorful crocheted cap and multilayered thigh-length cotton shirting—despite the biting December cold. The first...

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7. OUTSIDE HOME—AT WORK AND IN COMMUNITIES

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pp. 105-126

The possibility of experiencing discrimination had never occurred to me—of course not, given my demographics. I am white, upper middle class, well educated, from a family of girls taught we could achieve whatever we wanted if we worked hard enough. I therefore didn’t recognize the warning...

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8. PEOPLE TALKING TO THEIR PHYSICIANS

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pp. 127-141

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” wrote Susan Sontag (1990, 3). “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other...

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9. PHYSICIANS TALKING TO THEIR PATIENTS

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pp. 142-162

Medicine is not monolithic. As in other professions, some physicians, generalists and specialists alike, are more knowledgeable, technically skilled, and interested than others. I interviewed wonderful physicians who seemingly do the “right” things for people with mobility problems. Nevertheless...

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10. PHYSICAL AND OCCUPATIONAL THERAPY AND OTHER APPROACHES

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pp. 163-180

Dr. Alan Magaziner feels stymied. He hits that “borderline between what’s medical and what’s social” and can’t make the leap. Firmly rooted on the medical side, he recognizes that walking difficulties raise complex issues—physical, psychological, social, environmental—that he is poorly equipped...

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11. AMBULATION AIDS

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pp. 181-196

I had no choice about using a cane. One day during my surgical rotation in medical school, my right leg suddenly collapsed, and the fall broke a small bone in my foot—the fifth metatarsal. The fracture was minor, the pain abating within a week. The cane aided bone healing by off-loading weight...

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12. WHEELED MOBILITY

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pp. 197-222

Several years elapsed before I acceded to the guard’s prediction—that I would need a wheelchair sooner or later—and purchased my scooterwheelchair. I raised all the usual objections: using a scooter conceded failure; I would never walk again; my remaining muscle strength would...

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13. WHO WILL PAY?

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pp. 223-238

When I bought my first scooter over a dozen years ago, I had a gold-plated indemnity insurance policy, now virtually extinct, from Blue Cross–Blue Shield. The benefits package clearly included wheelchairs, but Blue Cross rejected my claim, arguing that a scooter-type electric wheelchair is a...

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14. WHAT WILL BE PAID FOR?

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pp. 239-259

A colleague who lives in a small mountain town described his neighbor. “Mary Jo is her name. She lives three blocks from us. She’s thirty-nine or forty, and she has diabetes. She’s had one leg amputated, and the other leg is constantly in danger. She lives in a low-income apartment, one of those...

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15. FINAL THOUGHTS

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pp. 260-271

A father called me recently to ask advice about his daughter Julie. The father is a physician, retired from practice but still well connected and vigorous. Julie, in her mid forties, had quit working several years ago because of MS. Her disease exhausts her, leaving her virtually bedridden on bad days....

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Appendix 1. Familiar Interviewees

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pp. 273-280

All fifty-six interviewees with mobility difficulties said important and memorable things. I quote almost everybody at least once somewhere in this book. Yet I cite some people much more than others, and they become familiar voices, recurring across chapters. Here, I intersperse additional descriptions of...

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Appendix 2. Selected Resources

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pp. 281-295

This appendix suggests sources people can contact to obtain information about function-related services, assistive technologies, laws and public policies concerning disability in general, and other selected topics. The list is not exhaustive, and the contact information is current as of July 2002. I grouped resources...

Notes

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pp. 297-318

References

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pp. 319-333

Index

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pp. 335-355

Production Notes

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pp. 356-379

Images

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pp. PS1-PS6