Defending deaf culture: The case of cochlear implants

Journal of Political Philosophy

Volumn 13, Issue 2, 2005, Pages 135-152

  Sparrow, Robert ^a  

^a MONASH UNIVERSITY   (Australia)

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EID: 18844428085     PISSN: 09638016     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1467-9760.2005.00217.x     Document Type: Article

References (64)

1. Because deafness early in life makes it extremely difficult for individuals to acquire speech, there are powerful incentives to provide deaf children with the implant at a very young age.
2. For accounts, see: H. Lane, "The Cochlear Implant Controversy, " WFD News, July 1994, pp. 22-8;
3. E. Dolnick, "Deafness as Culture," The Atlantic Monthly, September, 1993, pp. 37-53. I will follow other writers in the area by using capital D "Deaf" to indicate a cultural identity and lower case "deaf" to refer to those whose level of hearing does not allow them to live easily in a spoken-language-oriented society.
4. B. P. Tucker, "The ADA and Deaf culture: contrasting precepts, conflicting results," Annals of the American Academy of Political and Social Science, 549 (1997), 24-37;
5. Dolnick, "Deafness as Culture"
6. H. Lane, and M. Grodin, "Ethical issues in cochlear implant surgery: an exploration into disease, disability, and the best interests of the child" Kennedy Institute of Ethics Journal, 7 (1997), 231-51.
7. See, for instance, H. Lane, The Mask of Benevolence (New York: Knopf, 1992) and "The Cochlear Implant Controversy." There is a small but growing literature on the ethics of the development and use of the Cochlear Implant technology. As well as the sources cited above,
8. see: A. E. Brusky, "Making decisions for deaf children regarding cochlear implants: the legal ramifications of recognizing deafness as a culture rather than a disability," Wisconsin Law Review, 1995 (#1), 235-70;
9. R. A. Crouch, "Letting the deaf be Deaf: reconsidering the use of cochlear implants in prelingually deaf children," Hastings Center Report 27 (#4) (1997), 14-21;
10. D. S. Davis, "Genetic dilemmas and the child's right to an open future," Hastings Center Report, 27 (#2) (1997), 7-15;
11. M. D. Garretson, ed., Viewpoints on Deafness (Silver Springs, Md.: National Association of the Deaf, 1992);
12. C. Newell, "Access to opportunity or oppression: an Australian policy analysis of the ethics of the cochlear implant," Interaction, 13 (#3) (2000), 16-23;
13. B. P. Tucker, "Deaf culture, cochlear implants, and elective disability," Hastings Center Report, 28 (#4) (1998), 6-14;
14. N. Levy, "Reconsidering cochlear implants: the lessons of Martha's Vineyard," Bioethics, 16 (2002), 134-53.
15. See, for instance, the views attributed to Meg Aumann in D. O'Brien, "On Deaf Ears," The Big Issue, 122 (2-17 April, 2001), 16-17.
16. See also Dolnick, "Deafness as Culture," p. 38.
17. Tucker, "Deaf culture, cochlear implants, and elective disability," p. 7
18. Davis, "Genetic dilemmas and the child's right to an open future," p. 7;
19. Lane and Grodin, "Ethical issues in cochlear implant surgery." As I write this paper, a vigorous controversy is raging in the press about the decision of two Deaf lesbians to deliberately seek out a deaf sperm donor for an IVF procedure in order to maximise their chances of having a deaf child. See
20. L. Mundy, "A world of their own," Washington Post, March 31, 2002, p. W32.
21. H. Lane, R. Hoffmeister and B. Bahan, A Journey into the Deaf-World (San Diego, Calif.: DawnSign Press, 1996), pp. 18, 24-5.
22. Dolnick, "Deafness as culture," p. 38.
23. C. Barnes, G. Mercer and T. Shakespeare, Exploring Disability: A Sociological Introduction (Oxford: Polity Press, 1999).
24. S. Wendell, "Towards a feminist theory of disability," Hypatia, 4 (1989), 63-81.
25. See O. Sacks, Seeing Voices: A Journey into the World of the Deaf (London: Pan Books, 1991);
26. R. Rettenbach, D. Diller and R. Sireteanu, "Do deaf people see better? Texture segmentation and visual search compensate in adult but not in juvenile subjects," Journal of Cognitive Neuroscience 11 (#5) (1999), 560-83.
27. Despite constituting the majority of the population-which should serve to remind us that the category of the "normal individual" is far more normative than it is descriptive.
28. O'Brien, "On deaf ears," pp. 16-17;
29. Dolnick, "Deafness as culture";
30. Crouch, "Letting the deaf be deaf";
31. Lane and Grodin, "Ethical issues in cochlear implant surgery."
32. See W. Kymlicka, Multicultural Citizenship (Oxford: Oxford University Press, 1995), p. 76.
33. There are many distinct signed languages, just as there are many spoken languages.
34. For an excellent introduction to the rich world of Deaf culture, see: Lane, Hoffmeister, and Bahan, A Journey into the Deaf-World;
35. C. Padden and T. Humphries, Deaf in America: Voices from a Culture (Cambridge, Mass.: Harvard University Press, 1988).
36. R. J. Arneson and I. Shapiro, "Democratic autonomy and religious freedom: a critique of Wisconsin v. Yoder," in I. Shapiro and R. Hardin (eds), Nomos XXXVIII: Political Order (New York: New York University Press, 1996), pp. 365-41;
37. D. S. Davis, Genetic Dilemmas: Reproductive Technology, Parental Choices and Children's Futures (New York: Routledge, 2001);
38. J. Feinberg, "The child's right to an open future" in W. Aiken and H. LaFollette (eds), Whose Child? Children's Rights, Parental Authority, and State Power (Totowa, N.J.: Littlefield, Adams, 1980), pp. 124-53.
39. N. Levy, "Deafness, culture and choice," Journal of Medical Ethics, 28 (2002), 284-5.
40. Lane and Grodin. "Ethical issues in cochlear implant surgery."
41. The boundaries of membership of Deaf culture are, unsurprisingly, contested. In particular, the status of children of Deaf adults (CODAs), who have grown up with signed language but who can also hear, in the Deaf community is controversial. For different accounts of the boundaries of Deaf culture, see J. Roots, The Politics of Visual Language: Deafness, Language Choice and Political Socialisation (Ottawa: Carleton University Press, 1999). The extent of disagreement about the boundaries of Deaf culture is especially apparent in Garretson, Viewpoints on Deafness.
42. Lane and Grodin, "Ethical issues in cochlear implant surgery," p. 233.
43. As reported in Tucker, "Deaf culture, cochlear implants and elective disability," p. 8, some Deaf culturalists argue that Deaf culture is the "birthright" of these children. This claim is thrown into doubt once cochlear implant technology becomes available.
44. The nature of the relation between the biological and social components of Deafness also renders Deaf culture a unique case in the typology of cultures. While the Deaf constitute a distinct minority culture, members of Deaf culture are not immigrants who have entered our society. Nor have they left another culture (the exceptions here are those who became Deaf later in life after they had previously been inculcated in another spoken language culture). Instead potential members are generated within each national culture by accident of birth and individual history. The cultures of the Deaf may therefore be thought of as a type of immanent "indigenous" culture. (See the European Parliament's, Resolution on Sign Language for the Deaf, 17 June 1988, and Resolution on Sign Languages, 18 November 1998.) Like indigenous cultures in the New World, Deaf cultures have always existed but have been denied recognition of their status by majority cultures that have persecuted and institutionalised their members. See H. Lane, When the Mind Hears: A History of the Deaf (New York: Random House, 1984).
45. W. Kymlicka, Liberalism, Community and Culture (Oxford: Oxford University Press, 1989), pp. 163-6.
46. B. Parekh, "Dilemmas of a multicultural theory of citizenship, " Constellations, 4 (1997), 54-62.
47. See M. J. Sandel, Liberalism and the Limits of Justice (Cambridge: Cambridge University Press, 1982) and
48. Sandel, ed., Liberalism and its Critics (Oxford: Blackwell, 1984).
49. C. Taylor, "Can liberalism be communitarian?" Critical Review, 8 (1994), 257-62.
50. Lane and Grodin. "Ethical issues in cochlear implant surgery," p. 236.
51. It might be thought that this argument only establishes that children should not be deprived of the benefits of Sign while learning to use the implant. However there are three reasons to be suspicious of this "bi-cultural" solution to the question of the ethics of the implants. The first is practical/educational and concerns whether such bi-cultural education is likely to be pursued by parents and institutions that have invested a significant amount of effort, time and money in procuring an implant, and also whether it is likely to succeed in its intent. Cochlear implants are expensive devices; the many hours of speech therapy and other specialist assistance required to use them effectively are costly. Having made such a large commitment to this project, parents may be reluctant to spend time teaching their children Sign as well, especially if they feel that doing so is likely to distract their child from the task of learning to use the implant. Conversely, the more facility a child and their parents develop with signed language, the less incentive there is for them to persist in using the implant. There is thus an unstable tension in the project of teaching a child both to sign and to use the implant. The existence of this tension suggests that attempts to teach children to use both a signed and spoken language may incur a cost to their fluency in one or the other. However, these are empirical matters and it may prove that my concerns are ill-founded. My second and third reasons for concern are theoretical ones, which raise issues that will only have force for Deaf communitarians, and they will be discussed below.
52. New genetic technologies pose an equal if not greater threat to the survival of Deaf culture. See J. Kelly, "Chosen one: designer baby to have perfect hearing," Herald Sun (Melbourne), September 21, 2002, pp. 1-2.
53. Contra Lane and Grodin. "Ethical issues in cochlear implant surgery."
54. Davis, "Genetic dilemmas and the child's right to an open future."
55. Notice also that once such implants exist, deafness becomes an "elective disability" and therefore, it might be argued, society has less obligation to provide social and institutional support for the deaf. This argument is actually endorsed in Tucker, "Deaf culture, cochlear implants, and elective disability."
56. Again it might be thought that the argument here only establishes that the Deaf have a reason to want children taught Sign as well as spoken language. Surely even Deaf persons should agree that it is better for a child to have access to the opportunities made possible in both cultures? Once more, it is not my place to make this judgement. Nonetheless I can think of a number of reasons why a Deaf person might reject this conclusion. It is not uncommon for cultures to be defined against other cultures, with membership of a culture being predicated on rejection of the goods available in another culture. Members of a minority culture may draw together and reaffirm their commitment to each other and their culture by renouncing participation in the institutions and activities of a surrounding dominant culture. Where a culture defines itself in this way, it will not be possible to be a full member of the culture while affirming the worth of opportunities made available in another culture. There is some evidence that Deaf culture may be defined in this way, in the debate over whether or not CODAs are full members of Deaf culture. To the extent that a lack of ability and/or desire to participate fully in hearing culture is a condition of membership of Deaf culture, Deaf persons may have reasons to prefer that children be educated only in a signed language.
57. But more generally, I do not believe that such bilingual education succeeds in "summing" the cultures available to a child. If cultures are defined by the opportunities that they value and make available, then a person who attempts to be a member of two cultures is not a member of both, but is strictly speaking a full member of neither. To put this another way, in so far as members of each culture do not recognise and value the opportunities made available in the other, we cannot expect them to judge that a person who is "bicultural" has more opportunities than a member of their own culture.
58. For a useful survey of Deaf attitudes on these matters, see Roots, The Politics of Visual Language.
59. Note that I am not claiming here that a Deaf person would be justified in arguing that it would be better for a child to grow up Deaf even if this meant that they had fewer opportunities in life. From the perspective of such a Deaf parent, a child would have more opportunities to participate in those activities that they judge to be most valuable available to her, if she were to grow up in Deaf culture.
60. Continued development of implants for the post-linguistically deaf arguably does not convey the same disrespect for Deaf culture as those who lose their hearing later in life are less likely to be able to develop the fluency in signed language to enable them to participate as full members of Deaf culture.
61. There is also a similar, although weaker, argument for prohibiting research into cochlear implant technology even by private associations. Society's toleration of such research may be understood as condoning it. By refusing to prohibit research into the bionic ear, a society suggests that it is a matter of indifference whether or not Deaf culture is threatened by the success of such efforts, and this may be thought to demonstrate a profound disrespect for the interests and wellbeing of its members.
62. In fact, this will depend on the commitments of the person making the judgement. What is true is that my suggestion above that the state should, as much as is possible, not take a position on the relative merits of the cultures within it is naturally interpreted to suggest that the government should accord moral weight to the desires of parents from all cultures to bring their children up within their own culture.
63. Lane and Grodin. "Ethical issues in cochlear implant surgery."
64. Obviously, there must be a limit on how small a cultural group can be to demand respect from the state on this account. At the very least, in this case, a Deaf culture must be of sufficient size that it could sustain its culture in the absence of the threat posed by the existence of a bionic ear technology.