The Artificial Ear: Cochlear Implants and the Culture of Deafness

Preface

ix Preface This book has been long in the making and has deep roots. My interest in the development and the consequences of new technologies of health care was the result of my work, in the 1970s, as secretary of a British government committee on Social Inequalities in Health. How and why innovation in health care technology seems so often to exacerbate social inequalities, to be the cause of ethical, social, and economic problems in addition to providing cures, is a question that has preoccupied me ever since. It has roots in personal experience too. In 1989, my son Jascha, born in 1987, was found to be deaf. His brother Boaz, born in 1992, is hard of hearing. What did medical technology have to offer them? I decided that I would spend some time on a study that in one way or another would help me understand. How and why this became a study of the cochlear implant is discussed in the first chapter of this book. When I started work, more than fifteen years ago, I had little sense of how long it would take or how difficult it would be. Early in 1999, on vacation in Switzerland, I read Arthur W. Frank’s wonderful book The Wounded Storyteller. The insights that it provided in the relations between suffering, coping, and storytelling came as a revelation. If I had not read Frank’s book at that time I do not know if this one would ever have been completed. I read The Wounded Storyteller at a time in which I seemed no longer able to work on my study of the cochlear implant. I had begun a quite different, unrelated project, and returning to this one seemed too painful and too difficult. Slowly, and thanks to Frank’s book, I started to understand why this was so, but also to understand why, despite everything, I needed to finish my own. My difficulties had to do with the fact that the study was part of my attempt to come to terms with the place that deafness now had in my life, and that that “coming to terms” had ended. I had come to see my children no longer as “deaf” but simply as “my children.” Frank’s book showed me that not only was I too a “wounded storyteller” but that the storyteller has responsibilities not only to him- or herself but to others who might be helped or inspired by what he or she has to say. In the course of so many years, I have accumulated more debts than I can acknowledge here. I would, however, like to express my particular thanks to František Bouška, David Brien, Rita Bruning, Jean Dagron, Liisa Kauppinen, Harlan Lane, Bernard Mottez, Gunilla Őhngren, Olivier Perrier, Johan Ros, Terry Shinn, Anneke Vermeulen, Elizabeth Vroom, Johan Wesemann, and Lucy Yardley for their collaboration, advice, and support. The Wellcome Trust Programme in the History of Medicine provided financial support for a part of the research, while a fellowship from the French National Research Council (CNRS) and the hospitality of the GEMAS/Maison des Sciences de l’Homme made it possible for me to spend a number of fruitful months in Paris. Isabelle Baszanger, Rayna Rapp, Ulrike Lindner, and Maria Fernanda Olarte Sierra provided invaluable comments on versions of the manuscript, in whole or in part. Sib de Boer and Annette Portegies encouraged me to complete and publish a Dutch account of my experiences, while my editor at Rutgers, Doreen Valentine, has been a wonderful source of encouragement and advice. To all of them, and to Anja with whom I have shared so much of the experience that helped shape this book, I am deeply grateful. x Preface The Artificial Ear ...