Genetics, Disability, and Deafness

Book excerpt: Pulitzer Prize-winning author Louis Menand begins this wide-ranging volume with an essay that extols diversity and warns of the dangers of modifying the human genome. Nora Groce reviews the ways that societies have defined disability and creates an interpretive framework for discussing the relationship between culture and disability. In essays devoted to historical perspective, Brian H. Greenwald comments upon the real "toll" taken by A. G. Bell's insistence upon oralism, while Joseph J. Murray weighs the nineteenth-century debate over whether deaf-deaf marriages should be encouraged. John S. Schuchman's chilling account of deafness and eugenics in the Nazi era adds wrenching reinforcement to the impetus to include disabled people in genetics debates. Mark Willis offers an intensely personal reflection on the complexities of genetic alteration, addressing both his heart condition and his blindness in surprisingly different ways. Anna Middleton extends Willis's concepts in her discussion of couples currently considering the use of genetic knowledge and technology to select for or against a gene that causes deafness. In the part on the science of genetics, Orit Dagan, Karen B. Avraham, Kathleen S. Arnos, and Arti Pandya clarify the choices presented by genetic engineering, and geneticist Walter E. Nance emphasizes the importance of science in offering individuals knowledge from which they can fashion their own decisions. In the concluding section, Christopher Krentz raises moral questions about the ever-continuing search for human perfection, and Michael Bérubé argues that disability should be considered democratically to ensure full participation of disabled people in all decisions that might affect them.