Genetics, Disability, and Deafness

INTRODUCTION

INTRODUCTION 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 participation in society. Historian and activist Paul Longmore, for example, has written that “for the overwhelming majority [of disabled persons] prejudice is a far greater problem than any impairment; discrimination is a bigger obstacle than disability.”1 Deaf people also have tried to shift the focus of public discussion from their personal physical attributes to society’s response to them. They have argued that deafness is not fundamentally different from ethnicity and should be viewed from the same perspective. The use of accessible language, either a signed language or a spoken language in written form, they continue, renders deafness an interesting human variation, one that should be cherished, respected, even preserved.2 In these views, the “problems” encountered by people who are deaf or disabled are variable, socially constructed , and not inherent in their biological being. The attitude of the general, nondisabled public is different. In the popular imagination, disability “promises an unmistakable and noncontingent correspondence between biology and the self,” as one author has noted.3 The even more radical view that biology is destiny is gaining adherents in the United States, fueled in part by the claims of evolutionary psychologists, who view individual realization and social interaction within a framework of supposed evolutionary selection of biologically determined behavioral traits.4 Louis Menand notes in the vii first essay in this volume that even such behavioral attributes as anxiety or a taste for novelty recently have been ascribed to the effects of immutable genes rather than to complex human interactions within a specific cultural context. Current social arrangements, cultural habits, and public resource allocations are seen as timeless and essential to national well-being. In this popular view, then, improvement in the conditions of people with disabilities or deafness must come from rehabilitative technology, such as cochlear implants, or from changes in the genes that produce human variability. The Human Genome Project and other large scientific projects have contributed to the popular interest in genetics and their influence on human variability, behavior, and development. Generally, attempts to find genetic “cures” for disabilities, or other conditions that some people believe are nonconforming or negative in their effects on human potential, are applauded as progressive wonders of the modern age. Yet their realization in practice has been complex and raises troubling questions , such as when, under which conditions—or whether at all—it is ethical to use in vitro fertilization to select an embryo with particular, desired genes, or to use prenatal diagnoses and abortion to deselect for other, undesirable, biological characteristics. This volume, drawn from conference papers delivered at Gallaudet University in 2003, addresses these issues by bringing together essays from science and humanism, history and the present, to show the many ways that disability, deafness, and the new genetics can interact and what their interaction means for society. These questions are timely, as prenatal diagnosis of the most frequent form of genetic deafness, for example, is now easily accomplished. Indeed, in her study, “Deaf and Hearing Adults’ Attitudes toward Genetic Testing for Deafness,” Anna Middleton notes widely reported examples of couples attempting to use genetic knowledge and technology both to select for and against a gene that causes deafness. The historical sections show how deafness and genetics have been linked in the past and how deaf people have addressed eugenic concerns, but they are also cautionary. The line between scientifically neutral genetics and politically motivated eugenics is neither easily drawn nor easily identified. John Schuchman’s essay on deaf people in Nazi Germany recounts what can happen when the state sponsors eugenics programs. Moreover, scientifically validated linkages between human behavior viii INTRODUCTION and genes open the doors to genetic manipulation based on blatantly cultural preferences—such as gender, skin color, and height—which are neither consistent across cultures or time nor provably conducive to human well-being. Several arguments reappear in many of these essays and tie them together into a meaningful whole. One is that “The true good is the different , not the same,” as Menand writes in “The Science of Human Nature and the Human Nature of Science.” In other words, most authors share the belief that human diversity is a valuable attribute, and they are skeptical of attempts to eliminate it through changes...