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30 2 CONSENT TO SURGERY FOR DEAF CHILDREN: MAKING INFORMED DECISIONS Priscilla Alderson This chapter reviews the background social and ethical debates as well as the decision-making frameworks that are concerned with surgery for children. When choices are very hard to make and when the outcomes and balance of potential harms and benefits are complicated or disputed or uncertain, then it can be helpful to follow the processes of making the decision extremely carefully. Even if the decision that is eventually made turns out to be unfortunate, its outcome may be easier to bear if the people concerned can believe that they made the decision in the most informed and committed way that they could and that they knowingly undertook the risks. This chapter, therefore, reviews ethical debates and frameworks as well as questions for decision making that people who are considering surgery such as cochlear implants may wish to consider. The chapter is written ostensibly for responsible adults, although many points also concern children who are able to share in making decisions, and it reviews ways of assessing children’s competence to consent. BACKGROUND SOCIAL DEBATES AND QUESTIONS Modern societies exert many pressures on their members to treat the body as an unfinished project that should be maintained in a healthy and attractive state. The beauty and keep-fit industries are now complemented by the growing plastic surgery business. The use of technologies from make up to slimming aids to hip replacements is seen as responsible, socially advantageous, and (by some people) moral and almost obligatory. Although cochlear implants are not cosmetic, they are part of the powerful current trends to use technical aids to alter, adapt, and “improve” the natural body. The trends confirm the dominant view that deafness is an impairment, which therefore requires treatments to restore or confer normality . In contrast, the Deaf society argues that deafness can be part of the range of normality and that surgery such as cochlear implants is therefore not only unnecessary but also harmful. When considering a cochlear implant, informed decision making involves questioning these trends reflectively and asking Whom do they really benefit? Are such aids as essential and beneficial as is usually claimed? If the trends are taken for granted, then people are liable to opt for the treatment in question, believing TINA (There Is No Alternative), an assumption that prevents one from thinking critically and making wise choices. Through people’s extensive use of body improvers, notions of an authentic self or identity are blurring into concepts of expressing and fulfilling the self through adopting changing fashions and bodily appearances. The fulfillment partly comes through the perceived or actual social and economic advantages that a “better” looking and functioning body might bring. One great difference between adults and young children is that, however much they are pressured by fashion or peers or employers, adults usually have some choice in whether they alter their body, particularly if they must decide about something as serious as surgery. Young children, however, may not be informed or offered choices about preserving or altering their identity. “Preserving identity” might even seem to be an irrelevant concept for young children. They may be seen as not yet having any identity to alter, or at least not yet a fixed identity. Rather, their selfhood tends to be seen as fluid, developing, growing, and changing toward adult maturity, and adults must help children and choose for them in this process. The history of childhood is much concerned with adults’ efforts to shape children socially, emotionally, educationally, and physically . The term orthopedics literally means correcting children. The greater the adults’ conviction that this shaping effort is for the child’s own good, the less likely they are to doubt their decisions or to consult the child. Parenting is inevitably very much concerned, whether it is willing and conscious or not, with shaping or influencing children. However, rapid changes in childrearing trends leave each generation critical and sometimes shocked about past practices (Hardyment 1984; Miller 1985; Cooter 1992). These ever changing practices remind us how vital it is for parents to ask, Am I really doing this for my child’s sake or because of experts’ advice or to avoid being criticized? The past century has seen a great increase in pressure on parents from expert practitioners, politicians, advertisers, and journalists who compel them to micromanage their children (Rose 1990; Hendrick 2003). Yet parents also have to encourage their children to be flourishing individual, independent people...

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