246 Statistics on the proportion of severely hearing-impaired children under the age of three who receive implants come from Kate A. Belzner and Brenda C. Seal, “Children with cochlear implants: A review of demographics and communication outcomes,” American Annals of the Deaf 154, no. 3 (Summer 2009). From this article: “Severe to profound hearing loss is represented to occur in 0.1% to 0.2% of children (National Institute on Deafness and Other Communication Disorders [NIDCD], 2007). This means that in the United States there are potentially 72,000 to 145,000 deaf children who were or are candidates for implants. The FDA reported that 15,000 children had received cochlear implants by 2005 (American Academy of Audiology, n.d.); 25,000 were expected to be implanted by the end of the present decade, with the most rapid growth of the population receiving implants occurring among 12-month-olds (Gates & Miyamoto, 2003).”
247 Figures on racial and socioeconomic disparity in the distribution of implants come from John B. Christiansen and Irene W. Leigh, Cochlear Implants in Children: Ethics and Choices (2002), page 328.
248 Cochlear’s CEO made the remark about the as yet untapped market for implants in an interview with Bruce Einhorn, “Listen: The sound of hope,” BusinessWeek, November 14, 2005.
249 For impassioned criticism of cochlear implants, see Harlan Lane’s The Mask of Benevolence: Disabling the Deaf Community (1992). Although Lane’s book was written twenty years ago, and although technology has significantly progressed over the interim, complications are still fairly common, and the occasional revision continues to be necessary. Papers describing a medical community working assiduously to address the problem include Lorry G. Rubin and Blake Papsin, “Cochlear implants in children: Surgical site infections and prevention and treatment of acute otitis media and meningitis,” Pediatrics 126, no. 2 (August 2010), which indicates that postoperative surgical site infections occur in up to 12 percent of patients receiving cochlear implants; other complications include acute otitis media and bacterial meningitis. See also Kevin D. Brown et al., “Incidence and indications for revision cochlear implant surgery in adults and children,” Laryngoscope 119, no. 1 (January 2009): “The revision rate was 7.3% for children and 3.8% for adults.” Also, Daniel M. Zeitler, Cameron L. Budenz, and John Thomas Roland Jr., “Revision cochlear implantation,” Current Opinion in Otolaryngology & Head & Neck Surgery 17, no. 5 (October 2009): “A small but significant percentage (3–8%) of all cochlear implant procedures requires RCI surgery. The most common indication for RCI is hard failure (40–80%), but other common indications include soft failures, wound complications, infection, improper initial placement, and electrode extrusions.”
250 The R2-D2 comment is from personal communication.
251 The source of the anecdote about the woman who received a cochlear implant in early adulthood is Abram Katz, “The bionic ear: Cochlear implants: Miracle or an attack on ‘deaf culture’?,” New Haven Register, March 18, 2007.
252 HHS’s position on hearing screening for newborns can be found in the National Institute on Deafness and Other Communication Disorders fact sheet “Newborn hearing screening” (last updated February 14, 2011), at http://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=104.
253 From the National Association of the Deaf’s organizational history timeline (http://www.nad.org/nad-history):
“1999 . . . The NAD successfully co-drafts and pushes for passage of the Walsh Bill (Newborn and Infant Hearing Screening and Intervention Act of 1999).”
“2003 . . . Newborn and infant hearing screening hits 90%, as an outcome of NAD advocacy efforts.”
NAD’s current position statement on early intervention urges families to offer their children early exposure to American Sign Language in concert with assistive technologies and other strategies; see “Early intervention for infants and toddlers” at http://www.nad.org/issues/early-intervention.
254 The Australian study demonstrating improvement for children implanted before their first birthday is Shani J. Dettman et al., “Communication development in children who receive the cochlear implant under 12 months,” Ear & Hearing 28, no. 2 (April 2007). For more information on anesthesia risk to infants, see Rachael F. Holt and Mario A. Svirsky, “An exploratory look at pediatric cochlear implantation: Is earliest always best?,” Ear & Hearing 29, no. 4 (August 2008).
255 The study finding less progress in development of spoken language by children implanted at the age of four than in those implanted at two is Ann E. Geers, “Speech, language, and reading skills after early cochlear implantation,” Archives of Otolaryngology—Head & Neck Surgery 130, no. 5 (May 2004).
256 The impact of cochlear implants upon brain plasticity is discussed in James B. Fallon et al., “Cochlear implants and brain plasticity,” Hearing Research 238, nos. 1–2 (April 2008); and Kevin M. J. Green et al., “Cortical plasticity in the first year after cochlear implantation,” Cochlear Implants International 9, no. 2 (2008).
257 Recent studies on adolescents implanted as children include Alexandra White et al., “Cochlear implants: The young people’s perspective,” Journal of Deaf Studies & Deaf Education 12, no. 3 (Summer 2007) (described twenty-nine UK teenagers, most of whom feel positive about their implants); Lisa S. Davidson et al., “Cochlear implant characteristics and speech perception skills of adolescents with long-term device use,” Otology & Neurology 31, no. 8 (October 2010) (109 subjects, concluded that adolescents using updated processors performed the best at soft levels, and that greater access to soft speech does not compromise listening in noise); Elena Arisi et al., “Cochlear implantation in adolescents with prelinguistic deafness,” Otolaryngology—Head & Neck Surgery 142, no. 6 (June 2010) (forty-five adolescent subjects, one-third of whom turned out to be “poor performers,” implant-wise); and Mirette B. Habib et al., “Speech production intelligibility of early implanted pediatric cochlear implant users,” International Journal of Pediatric Otorhinolaryngology 74, no. 8 (August 2010) (forty subjects, concluded that implantation in the first two years of life produces highly intelligible speech before the age of six; this holds true for most, but not all, children implanted in their third year).
258 The study of open speech discrimination in children receiving cochlear implants was conducted by Susan B. Waltzman et al., “Open-set speech perception in congenitally deaf children using cochlear implants,” American Journal of Otology 18, no. 3 (1997), as cited by Bonnie Poitras Tucker in “Deaf culture, cochlear implants, and elective disability,” Hastings Center Report 28, no. 4 (July 1, 1998). A 2004 study had similar findings: Marie-Noëlle Calmels et al., “Speech perception and speech intelligibility in children after cochlear implantation,” International Journal of Pediatric Otorhinolaryngology 68, no. 3 (March 2004).
259 The survey of parents’ perceptions of their implanted children’s hearing and verbal comprehension was conducted by Gallaudet Research Institute, Regional and National Summary Report of Data from the 1999–2000 Annual Survey of Deaf and Hard of Hearing Children and Youth (2001).
260 The review concluding that implants offer only coarse and degraded versions of sound, and that children with the implant perceive fewer fine distinctions of spoken language than their peers can be found in The Oxford Handbook of Deaf Studies, Language and Education (2003), page 435.
261 In its brochures “The Reason to Choose AB” and “Hear Your Best,” Advanced Bionics prominently quotes from Michael Chorost, author of Rebuilt: My Journey Back to the Hearing World (2006): “The Bionic Ear appeared to offer more potential for being upgraded in the future as new and better coding strategies and software became available so that I could conceivably have more and better hearing.”
262 Interview with Robert Ruben, 1994.
263 Degrees of deafness and ways of classifying hearing loss are delineated in Richard J. H. Smith et al., “Deafness and hereditary hearing loss overview,” GeneReviews™ (1999–2012), at http://www.ncbi.nlm.nih.gov/books/NBK1434/.
264 Although NAD’s 1993 position paper condemning �
�invasive surgery on defenseless children” does not appear to have been published on the NAD website, the full text is archived on an Israeli website at http://www.zak.co.il/d/deaf-info/old/ci-opinions.
265 The modification of NAD’s position regarding cochlear implants was voted at the NAD’s Board of Directors meeting held October 6–7, 2000; see National Association of the Deaf, “NAD position statement on cochlear implants,” October 6, 2000. Additional resources on the debate within the Deaf community about cochlear implants: Marie Arana-Ward, “As technology advances, a bitter debate divides the deaf,” Washington Post, May 11, 1997; Felicity Barringer, “Pride in a soundless world: Deaf oppose a hearing aid,” New York Times, May 16, 1993; and Brad Byrom, “Deaf culture under siege,” H-Net Reviews, March 2003.
266 Christina Palmer made this statement directly to me. The “deaf ethnicity hypothesis” is the subject of Richard Clark Eckert, “Toward a theory of deaf ethnos: Deafnicity ≈ D/deaf (Hómaemon • Homóglosson • Homóthreskon),” Journal of Deaf Studies & Deaf Education 15, no. 4 (Fall 2010).
267 This passage is based on my interview with Dan, Nancy, and Emma Hessey in 2007 and subsequent communications.
268 The Hesseys succeeded in obtaining permission for Emma to come to the United States thanks to a “waiver of excludability,” which permits a person otherwise deemed ineligible to immigrate to the United States an adjustment of status under the US Immigration and Naturality Act. Waivers may be granted “for humanitarian purposes, to assure family unity, or otherwise when it is in the public interest,” except to individuals suspected of drug trafficking, terrorist activities, Nazi persecution and genocide, or those whose exclusion proceeds from security or foreign policy concerns. See Michael Aytes, “Waivers under Section 209(c) of the Immigration and Nationality Act (AFM Update 05-33),” (Washington, DC: U.S. Immigration & Naturalization Service, October 31, 2005).
269 Figures for the cost of cochlear implantation come from the Alexander Graham Bell Association’s FAQ “The cost of cochlear implants,” at http://nc.agbell.org/page.aspx?pid=723. Others estimate the total cost at $50,000 to $100,000; see the University of Miami School of Medicine’s “Costs associated with cochlear implants,” at http://cochlearimplants.med.miami.edu/implants/08_Costs%20Associated%20with%20Cochlear%20Implants.asp.
270 Figures on cost savings attributable to cochlear implantation come from two studies: André K. Cheng et al., “Cost-utility analysis of the cochlear implant in children,” Journal of the American Medical Association 274, no. 7 (August 16, 2000); and Jeffrey P. Harris et al., “An outcomes study of cochlear implants in deaf patients: Audiologic, economic, and quality-of-life changes,” Archives of Otolaryngology—Head & Neck Surgery 121, no. 4 (April 1995).
271 The quotation from the first mother (“If your child needs glasses . . .”) comes from the article “Implants help child emerge from silent world,” Associated Press/Casper Star-Tribune, April 24, 2006; the second (“If at 20 . . .”) comes from Anita Manning, “The changing deaf culture,” USA Today, May 2, 2000.
272 This passage is based on my interview with Bob Osbrink in 2008 and subsequent communications. The story of Rory’s childhood has been told in Jim Walters’s “Help for parents of the hearing-impaired child,” Los Angeles Times, October 14, 1986. Rory discusses his cochlear implants and the choice to turn them off in Arthur Allen’s “Sound and fury,” Salon, May 24, 2000; and Anita Manning’s “The changing deaf culture,” USA Today, May 2, 2000.
273 For more information on hearing loss in meningitis, see the Deafness Research Foundation UK fact sheet “Meningitis and hearing loss” (2005); the National Institute of Neurological Disorders and Stroke, “Meningitis and encephalitis fact sheet” (2004); and M. P. Richardson et al., “Hearing loss during bacterial meningitis,” Archives of Disease in Childhood 76 (1997).
274 The House Ear Institute and Clinic was cofounded by Howard House and his brother, William House.
275 The quotation from Rory comes from Arthur Allen, “Sound and fury,” Salon, May 24, 2000.
276 Teresa Blankmeyer Burke’s statement occurs in her essay “Bioethics and the deaf community,” in Signs and Voices: Deaf Culture, Identity, Language, and Arts, edited by Kristin A. Lindgren et al. (2008), pages 69–70.
277 Paula Garfield and Tomato Lichy describe their feelings about having a deaf daughter in Rebecca Atkinson, “‘I hoped our baby would be deaf,’”Guardian, March 21, 2006.
278 This passage is based on my interview with Felix, Rachel, and Sharon Feldman in 2008 and subsequent personal communications. All names in this passage are pseudonyms.
279 Jewish Deaf Community Center organizational website: http://www.jdcc.org.
280 Harlan Lane likens cochlear implantation to genital surgery on infants with intersex conditions in his paper “Ethnicity, ethics and the deaf-world,” Journal of Deaf Studies & Deaf Education 10, no. 3 (Summer 2005).
281 See Paddy Ladd, Understanding Deaf Culture: In Search of Deafhood (2003), page 415: “In the 1990s, genetic engineering has initiated the process of trying to identify ‘the deaf gene,’ thus bringing within theoretical reach what might be termed the ‘final solution’—that of eradicating Deaf people altogether.”
282 Harlan Lane likened attempts to eliminate deafness to attempts to eliminate ethnic groups in Paul Davies, “Deaf culture clash,” Wall Street Journal, April 25, 2005.
283 John B. Christiansen and Irene W. Leigh report that only half of the parents they surveyed had communicated with deaf adults prior to a decision to implant their children, and that some of those who did were met with hostility for even considering the procedure; see their paper “Children with cochlear implants: Changing parent and deaf community perspectives,” Archives of Otolaryngology—Head & Neck Surgery 130, no. 5 (May 2004): “When the parents were asked about whether they had had contact with the deaf community before the decision regarding implantation was made, according to both the GRI parent survey and our interviews approximately 50% of the parents reported that they had not previously met any deaf adults. The GRI survey found that 29% of the other parents had met deaf adults who opposed implantation of deaf children, 24% had met deaf adults who were supportive, and 16% had met deaf adults who were neutral. Another 6% had met with adults (or parents of deaf children) who had discontinued implant use. (Survey respondents were asked to select all sources of information. Thus, the total exceeds 100%.) Some of the parents with whom we discussed this issue reported positive experiences, while others who met deaf opponents of the procedure felt that their experiences were distinctly unhelpful. As one parent said, ‘When we spoke to the deaf community about the CI [cochlear implant] . . . certain members of the deaf community . . . their feelings were so angry and so hurtful. I mean, we were called child abusers . . . and butchers.’ In contrast, another parent reported, ‘It’s important for the voice of the deaf community to keep people cautioned or aware of, wait a minute, slow down this speeding train.’”
284 Gunilla Preisler discusses the Swedish practice of requiring parents of deaf children to learn about deafness from Deaf people in “The psychosocial development of deaf children with cochlear implants,” in Surgical Consent: Bioethics and Cochlear Implantation, edited by Linda Komesaroff (2007), pages 120–36.
285 Studies describing both the social gains and difficulties faced by young people with cochlear implants include Yael Bat-Chava, Daniela Martin, and Joseph G. Kosciw, “Longitudinal improvements in communication and socialization of deaf children with cochlear implants and hearing aids: Evidence from parental reports,” Journal of Child Psychology & Psychiatry 46, no. 12 (December 2005); Daniela Martin et al., “Peer relationships of deaf children with cochlear implants: Predictors of peer entry and peer interaction success,” Journal of Deaf Studies & Deaf Education 16, no. 1 (January 2011); and Renée Punch and Merv Hyde, “Social participation of children and adolescents with cochlear implants: A qualitative analysis of parent, teacher, and child interviews,” Journal of Deaf Studies
& Deaf Education 16, no. 4 (2011).
From Bat-Chava et al: “Variability in functioning of children with implants may take different forms. Children perform differently depending on the situation in which they find themselves. Although children who use the implant to its maximum benefit may function similarly to hard of hearing children (Tait & Lutman, 1994) and hear much better than they did before receiving the implant, many children continue to experience difficulty communicating in adverse listening situations situations (e.g., with noise in the background or in groups; Bat-Chava & Deignan, 2001). Their functioning in such environments is therefore compromised and differs from their functioning in less adverse communication situations. In addition, there is variability in functioning between children. Although some children may perform very well with the implant, others may perceive only environmental sounds, and receive no benefit from the implant in communicating orally with hearing peers. A sole focus on averages masks the fact that some deaf children progress faster than hearing children and are able to achieve communication and socialization skills that are age-appropriate or are even advanced for their age, whereas other deaf children continue to lag behind their hearing peers. Many children in our study still function below age level in all domains, even after years of hearing aid or implant use. Other authors have also noted the great variability in communication and socialization skills of children with implants (Christiansen & Leigh, 2002; Ouellet & Cohen, 1999).
“The variability in functioning with an implant depends in part on age at implant, mode of communication, and cognitive factors (Pisoni et al., 1999; Sarant et al., 2001; Waltzman & Shapiro, 1999). In our study we find that for children with cochlear implants, duration of implant use interacted with level of hearing loss in affecting improvement. For children with more severe hearing loss, duration of implant use did not have an effect; all children with greater hearing loss benefited equally from the implant regardless of how long they had used the implant. For children with less severe hearing loss, on the other hand, having an implant for a shorter period was less beneficial than having an implant for a longer period. This suggests that children with greater hearing loss hit a plateau of improvement early on, and do not continue to improve, whereas children with lower levels of hearing loss continue to improve with longer duration of implant use. Other researchers found that earlier implantation tends to produce better results in terms of speech and hearing (Svirsky et al., 2000; Waltzman & Shapiro, 1999), pointing to age at implantation as another source of variability in children’s functioning, although in our study duration of implant use, rather than age at implant, was the important factor. Improvement in socialization seems to follow improvement in communication skills. Although communication and socialization skills improve at different rates, they clearly improve together. Better communication is related to better socialization. The improvement in socialization skills may be related to the stigma associated with ‘imperfect’ speech to which children are very sensitive (Spencer, Koester, & Meadow-Orlans, 1994). Deaf children whose speech is not clear may be rejected or ignored by peers, which then affects their ability to socialize. In fact, several studies have demonstrated that deaf children in a mainstream environment tend to be either rejected or (more commonly) ignored by hearing classmates (Cappelli, Daniels, Durieux-Smith, McGrath, & Neuss, 1995; Nunes & Pretzlik, 2001). No study has yet assessed peer acceptance or rejection of children with implants, however. If implants adequately improve deaf children’s ability to communicate, future studies should find that these children are rejected or ignored less (or not at all) compared to those with hearing aids.”
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