Cover

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Title Page, Copyright Page

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CONTENTS

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pp. v-vi

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INTRODUCTION

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p. vii

Disability theorists have argued since the late-twentieth century that disability is a social construct and that cultural and political decisions, rather than biological characteristics, restrict their full and complete...

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PART1 SCIENCE, CULTURE, AND HUMAN VARIATION

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pp. 1-4

Louis Menand and Nora Groce, the authors of the first two essays in this book, are both well known—Menand for The Metaphysical Club and Groce for Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard.1 Despite profound differences in their approaches...

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The Science of Human Nature and the Human Nature of Science

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pp. 5-22

In 1889, the German biologist August Weissmann showed that mice whose tails are cut off do not produce short-tailed offspring. It was a step forward for science, but a step backward for civilization. Weissmann’s discovery was good for science because, contrary to...

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The Cultural Context of Disability

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pp. 23-30

Disability is a universal—in all societies, through all ages, individuals have been born with or have acquired disabilities. The lives of these individuals, however, will in large measure be determined not...

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PART 2 DEAFNESS AND GENETICS: A TROUBLED PAST

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pp. 31-34

Historically, the link between genetics and deaf people was provided by eugenics, by the attempt to “improve” society through the elimination of particular genes believed to be deleterious to social progress. American...

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The Real “Toll” of A. G. Bell: Lessons about Eugenics

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pp. 35-41

The relationship between Alexander Graham Bell and other eugenicists during the late-nineteenth and early-twentieth centuries is worth studying to understand the intertwining of deafness and eugenics in early-twentieth-century America. I will approach this subject by...

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True Love and Sympathy”: The Deaf-Deaf Marriages Debate in Transatlantic Perspective

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pp. 42-71

“I desire to draw attention to the fact that in this country deaf-mutes marry deaf-mutes,” said Alexander Graham Bell in his opening presentation to the November 1883 session of the American National Academy of Sciences.1 The enormity of this fact “consumed the entire...

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Deafness and Eugenics in the Nazi Era

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pp. 72-78

Adolph Hitler became the Chancellor of Germany in January 1933. A short time earlier, the German deaf community, represented by the Reich Union of the Deaf of Germany (REGEDE), produced an educational film Verkannte Menschen (Misjudged People).1...

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PART 3 THE SCIENCE OF 79 GENETIC DEAFNESS

Genetics and disability began to interact in new ways in the late-twentieth century, as the Human Genome Project identified all the genes humans carry and mapped the sequences of chemicals that determine genetic....

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The Complexity of Hearing Loss from a Genetics Perspective

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pp. 81-93

Molecular biology has provided tremendous tools for answering biological questions in the past twenty-five years. Today, we have had a revolution in this area with the Human Genome Project and the sequencing of the human genome—the identification of...

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The Epidemiology of Hereditary Deafness: The Impact of Connexion on the Size and Structure of the Deaf Community

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pp. 94-106

This paper will discuss briefly what we now know about the causes of deafness and how they can change with time. It will not dwell upon the many different forms of genetic deafness that have been identified as part of the Human Genome Project, but it will review what is...

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PART 4 THE USES OF GENETIC KNOWLEDGE

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pp. 107-110

The essays in this section demonstrate the intersection of genetic science and the lives of people who are labeled deaf or disabled, and they do so from widely divergent disciplinary and personal perspectives. The...

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Genes for Deafness and the Genetics Program at Gallaudet University

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pp. 111-126

At least 1 in 1,000 newborn infants has severe to profound deafness, and genetic factors cause at least 50–60 percent of these cases (Marazita et al. 1993). Hereditary deafness is not a single entity; more than 400 forms are known to exist. Given that there are fewer than...

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Deaf and Hearing Adults’ Attitudes toward Genetic Testing for Deafness

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pp. 127-147

Genetic factors play a major role in the development of both congenital and late-onset deafness (Cohen and Gorlin 1995). More than 120 different genetic loci involved with deafness have been identified over the past ten years (Van Camp and Smith 2004),...

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Negotiating (Genetic) Deafness in a Bedouin Community

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pp. 148-173

In the winter of 1995, I became acquainted with the inhabitants of a Bedouin settlement in the Negev Desert of Israel. These people, whom I refer to as Abu-Shara or As-Sharat, after their common ancestor, Abu-Shara, are all of common descent.1 This group, now...

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Not This Pig: Dignity, Imagination, and Informed Consent

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pp. 174-186

In the heyday of eugenics in the 1920s and 30s, you could not avoid a figure of speech that I will call the “litany of defectives.” You would find it in college biology texts and popular magazine stories...

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PART 5 AN ERA DEFINED BY GENOMICS

The final two essays in this collection look at the broad social and political consequences of genetic research and the place of disability in the popular imagination and in government policy. Both challenge the...

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Frankenstein, Gattaca, and the Quest for Perfection

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pp. 189-201

Fifty years ago, Francis Crick and James Watson discovered the structure of DNA, helping to launch a scientific revolution that is affecting many aspects of our lives. The list of developments is both exciting and a bit unsettling. Perhaps most encouraging, scientists agree that...

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Disability, Democracy, and the New Genetics

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pp. 202-220

In this essay, I will try to suggest ways of thinking about biotechnology and disability that are compatible with democratic values. I believe there is no disputing that we have entered an era defined by genomics, an era in which our capacity for manipulating genetic...

CONTRIBUTORS

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pp. 221-222

INDEX

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pp. 223-228