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58 The Cochlear Implant and the Deaf Community For a while, in the mid-1980s, cochlear implantation seemed to be faltering. Despite endorsement by the medical profession, the market was growing far more slowly than manufacturers had expected. It was recognized that financial barriers were holding back sales of the device and that hospitals faced financial disincentives. Nevertheless, the discovery that few adult deaf people seemed even to want an implant was unexpected. Neither manufacturers nor implant teams had much idea of what lay behind this lack of interest, though it clearly involved something more than just the costs. Implant teams and manufacturers then turned their attention to deaf children, the vast majority of whom have hearing parents. Smaller versions of the implant that allowed for their wearer’s growth were developed and new rehabilitation procedures established. In 1990, market prospects were dramatically transformed by FDA approval of the Nucleus implant for use with children. Why were adult deaf people so unenthusiastic, despite professional endorsement of the implant and despite the widely publicized claim that it could give them hearing? As discussed in chapter 1, there are various grounds on which people reject interventions (such as prenatal testing and vaccinations for their children) recommended by medical practitioners. Some people consult the medical literature themselves and find the evidence for the intervention insufficiently convincing. Others reason on the basis of deeply held personal convictions or beliefs, or the prior experience of themselves, friends, or family. Refusal of a medically prescribed test or treatment does not necessarily mean doing nothing. Beliefs or experiences that lead a person to go against a physician’s advice may also lead him or her to seek out an unconventional form of treatment or (self) care. It may lead him or her to seek out other like-minded people, looking for support from others who have made Chapter 3 The Cochlear Implant and the Deaf Community 59 the same difficult decision. A variety of health-related practices and biosocial groupings derive from critique (and perhaps rejection) of some part at least of medical orthodoxy. One is the diverse set of healing practices commonly called “complementary and alternative medicine,” or CAM. The orthodox medical view has long been that holistic approaches to healing were mere quackery. At best they were seen as offering solace and comfort. Nevertheless, it is now clear that CAM is used to an increasing extent, especially by people suffering from life-threatening diseases such as cancer.1 Its techniques and practitioners give people something they feel is missing from orthodox medicine. Today, American consumers spend billions of dollars annually on CAM.2 Another group who reject traditional medical treatments is the environmental breast cancer movement, which calls the biomedical model of the disease into question but then moves in a more political direction. Criticizing the emphasis on individual bodily etiology, it argues that attention should shift to the environmental causes of the disease.3 Another example is the “pro-ana” movement, which brings together, rather loosely, people who reject the orthodox view of anorexia as an eating disorder.4 Pro-ana material is disseminated over the Internet through a wide variety of support groups and social networking sites. At some of these sites, anorexics can discuss their problems, the strategies they use to diet or hide their weight loss, or their experience in refusing medical or psychological treatment. Some sites go further, insisting that anorexia be viewed not as an illness but as a “lifestyle choice” that should be respected by families and by doctors.5 The medical profession has responded differently to the different approaches. However reluctantly, CAM has to some degree been embraced. A National Center for Complementary and Alternative Medicine was established under the NIH in the 1990s and many leading academic medical centers have established departments or institutes for the study of CAM. In the United Kingdom, some National Health Service hospitals have begun to provide CAMs for cancer patients who want to make use of them.6 Without engaging the epistemological differences involved, and through careful processes of demarcation and adjustment, clinicians and medical institutions are finding ways of using CAMs to complement their professional role and strengthen their market position.7 The medical response to the pro-ana movement has been very different. Rejecting established approaches to managing (that is, curing) anorexia, pro-ana has been vigorously attacked by the National Eating Disorders Association, by the National Association of Anorexia Nervosa and Associated Disorders, and in...

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