Far From the Tree

by Solomon, Andrew

  “A series of studies examined vocabulary in pre-school for four large samples (n = 65 to 153) of recent cohorts of children with CIs (age range = 4.5 to 6.0) who attended (almost exclusively private) oral communication schools that fostered high parent participation (Geers, Moog, Biedenstein, Brenner, & Hayes, 2009; Geers, Nicholas, & Moog, 2007; Nicholas & Geers, 2008). On average, scores of children with CIs were in the low average range for hearing children (85 to 90 standard scores) on standardized expressive and receptive spoken vocabulary tests, with standard deviations slightly larger than the norm (e.g., 18–19 rather than 15). Approximately 50% of the children scores were within the average range for hearing norms, while 50% scored more than one standard deviation below the mean. Pre-implant hearing level, age of implantation, nonverbal IQ, and parental education were identified as independent contributors to vocabulary scores.”

  Mary Pat Moeller et al. write in “Current state of knowledge: Language and literacy of children with hearing impairment,” Ear & Hearing 28 (2007): “Across these studies, divergent conclusions were reached regarding the status of vocabulary in school-aged students with HI. Some suggest that even the mildest degree of HI will delay vocabulary development (Davis, Elfenbein, Schum, & Bentler, 1986; Davis, Shepard, Stelmachowicz, & Gorga, 1981; Wake, Hughes, Poulakis, Collins, & Rikards, 2004). Others conclude that many school-aged children with mild-moderate HI perform comparably to age-matched peers with NH (Gilbertson & Kamhi, 1995; Plapinger & Sikora, 1995; Wolgemuth, Kamhi, & Lee, 1998). A longitudinal study conducted in Germany (Kiese-Himmel & Reeh, 2006) suggested that preschool children with mild to severe HI make larger gains in vocabulary than children with greater degrees of HI; 2 of 5 children with mild HI and 2 of 11 with moderate HI developed age-appropriate vocabulary skills.

  “Gilbertson and Kamhi (1995) reported a bimodal distribution in the vocabulary scores of 20 school-aged students with mild-moderate HI. Specifically, high performers (n 10) scored in the low average range on the PPVT (Mean Standard Scores 88.3), whereas low performers (n 10) scored significantly below average (Mean SS 58.1). Because the low performers had difficulty on a variety of language/learning tasks, it was postulated that these children had Specific Language Impairments (SLI) in addition to hearing loss. However, it is unclear whether children in this study varied on background variables (e.g., age of interventions/amplification). In a later study (Moeller, 2000), intervention history and family involvement were found to contribute.

  “Two recent studies identified delays in the development of early receptive and expressive vocabulary in young children with HI, some of whom were studied longitudinally from infancy (Mayne, Yoshinaga-Itano, & Sedey, 2000; Mayne, Yoshinaga-Itano, Sedey, & Carey, 2000). These studies used a maternal report measure (MacArthur-Bates Communicative Development Inventory, MCDI; Fenson, Dale, Reznick et al., 1993) to examine vocabulary size at several ages in large groups (168 and 113, respectively) compared with norms for infants with NH. In both studies, slightly more than 50% of the participants had HIs in the mild to severe range, and early identification was common. The results suggested that the average performers (those at the 50th percentile for HI) were significantly delayed in both receptive and expressive vocabulary compared with age-matched children with NH. Acceleration of the rate of expressive vocabulary learning was observed in the young children with HI after 25 mo of age (approximately 7 mo later than observed in toddlers with NH).”

  158 The Douglas Baynton quotation (“The difficulty of learning spoken English . . . a soundproof glass cubicle”) comes from Forbidden Signs: American Culture and the Campaign against Sign Language (1996), page 5.

  159 The observation that a mother must “impose herself upon his natural play-learning patterns, often against his will” comes from Eugene D. Mindel and McKay Vernon, They Grow in Silence: The Deaf Child and His Family (1971), page 58, as cited in Beryl Lieff Benderly, Dancing Without Music: Deafness in America (1990), page 51.

  160 All quotations from Jackie Roth occurring in this chapter come from multiple interviews and communications with her since 1994.

  161 Although it is often thought that IDEA mandates that children with disabilities be educated with their nondisabled peers, the law actually calls for the education of disabled children in such a way as to “ensure their access to the general curriculum to the maximum extent possible,” in the “least restrictive environment” possible. See Sultana Qaisar, “IDEA 1997—‘Inclusion is the law,’” paper presented at the Annual Convention of the Council for Exceptional Children, Kansas City, Missouri, April 18–21, 2001; and Perry A. Zirkel, “Does Brown v. Board of Education play a prominent role in special education law?,” Journal of Law & Education 34, no. 2 (April 2005). Zirkel writes: “There are several important differences between Brown and the IDEA legislation/litigation. First, Brown was a constitutional case, more specifically an equal protection decision. The modern special education cases are almost entirely statutory interpretation decisions, and the IDEA legislation is premised on the due process clause as well as the equal protection clause without squaring with either one. Second, the holding in Brown ultimately relied on race as a suspect classification, triggering what has now crystallized as strict scrutiny, whereas the subsequent special education cases have rejected such status for disability. Conversely, dicta in Brown stressed the importance of education, but subsequent Supreme Court decisions narrowed that importance to less than the level of a fundamental right, i.e., constitutional, right. Third, Brown represents an equality version, whereas the IDEA is more an equity version, of equal opportunity. FAPE means more than equal, whether separate or not, whereas Brown offered no such mandate. Fourth, and perhaps the most important difference, contrary to the purported landmark role of Brown in terms of LRE under the IDEA, is that Brown rejected separate but equal, with the remedy being desegregation. In contrast, LRE provides a continuum of placements that, although leaning toward integration, include separate, special classes and schools. Finally, Brown provides a group solution against discrimination, whereas the IDEA provides an individualized approach for what arguably is akin to reverse discrimination.

  “Thus, Brown is of undeniable significance in education law, but its position in special education law-both litigation and legislation-is notably more indirect and limited than commonly conceived in the prevailing texts. The problem with the text authors may be that, as Ladson-Billings contends more generally, ‘[Brown] is reified in U.S. legal, political, and popular culture.’ Further research and reflection are warranted and welcome before reaching a definitive characterization of the nature and extent of its position within the specific context of special education law.”

  162 Statistics on the decline of residential schools come from Ross E. Mitchell and Michael Karchmer, “Demographics of deaf education: More students in more places,” American Annals of the Deaf 151, no. 2 (2006).

  163 Judith Heumann declared that separate education for deaf students was “immoral” in her article “Oberti decision is core of the ED’s inclusion position,” Special Educator, November 2, 1993, page 8, as cited in Jean B. Crockett and James M. Kaufmann, The Least Restrictive Environment: Its Origins and Interpretations in Special Education (1999), page 21.

  164 Justice Rehnquist’s words occur in Board of Education v. Rowley, 458 U.S. 176 (1982); the full text of the decision can be found at http://www.law.cornell.edu/supremecourt/text/458/176.

  165 Statistics on high school completion, college attendance, and earnings potential of deaf children and young adults come from Bonnie Poitras Tucker, “Deaf culture, cochlear implants, and elective disability,” Hastings Center Report 28, no. 4 (July 1, 1998).

  166 Studies finding superior performance of deaf children of deaf parents compared to deaf children of hearing parents include E. Ross Stuckless and Jack W. Birch, “The influence of early manual communication on the linguistic development of deaf children,” American Annals of the Deaf 142, no. 3 (July 1997); Kenneth E. Brasel and Stephen P. Quigley, �
��Influence of certain language and communication environments in early childhood on the development of language in Deaf individuals,” Journal of Speech & Hearing Research 20, no. 1 (March 1977); and Kathryn P. Meadow, “Early manual communication in relation to the deaf child’s intellectual, social, and communicative functioning,” Journal of Deaf Studies & Deaf Education 10, no. 4 (July 2005).

  167 Helen Keller’s observation is famous, but it may also be apocryphal. According to the tireless research librarians at Gallaudet University, this sentence appears to represent a distillation of sentiments expressed in two published sources. See Tom Harrington, “FAQ: Helen Keller Quotes,” Gallaudet University Library, 2000, http://www.gallaudet.edu/library/research_help/research_help/frequently_asked_questions/people/helen_keller_quotes.html: “Helen Keller supposedly said (or wrote) the following, or words very close to it: ‘Blindness cuts us off from things, but deafness cuts us off from people.’ We have never been able to trace this quotation to its original source, if indeed it was ever expressed in that form. However, Keller did express this same idea, in different words, at least twice. One occurrence appears in her Helen Keller in Scotland: A Personal Record Written by Herself, edited by James Kerr Love (London: Methuen & Co., 1933). On page 68, in a 1910 letter written to Kerr Love and reprinted in this book, she wrote:

  “‘The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus—the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.’

  “This excerpt from Keller’s letter is also reprinted in Grant, Brian, ed., The Quiet Ear: Deafness in Literature, an Anthology (London: Andre Deutsch, 1987), p. 36–37.

  “For another occurrence, the article by Jean Christie, ‘Keller, Helen,’ in the Gallaudet Encyclopedia of Deaf People and Deafness (New York: McGraw-Hill, 1987, vol. 2, p. 125), quotes Keller:

  “‘To a commonly posed question, Keller in her advancing years replied that she had concluded “after a lifetime in silence and darkness that to be deaf is a greater affliction than to be blind. . . . Hearing is the soul of knowledge and information of a high order. To be cut off from hearing is to be isolated indeed.”’

  “Christie does not cite when or where this was originally said, but newspaper clippings in the Gallaudet University Archives show that it was said on June 21, 1955, in a pre-75th birthday interview at her home in Arcan Ridge, Connecticut.”

  168 The quotation from Lennard Davis appears in My Sense of Silence: Memoirs of a Childhood with Deafness (2000), pages 6–8. It has been condensed. “To this day if I sign ‘milk,’ I feel more milky than if I say the word” occurs on page 6; the rest of the passage occurs two pages later. In its entirety: “Signing is like speech set to dance. There is a constant pas de deux between the fingers and the face. Since the features must express tone and volume, the face is continually mirroring the meaning of the fingers. There are combinations of small-motor skills, quick finger darts, and large sweeps of the arms and the body. Those who do not know sign language can only see the movements as distant and unnuanced. But those who understand signing can see the finest shade of meaning in a gesture. Like the pleasure some hearing people take in the graded distinctions between words like ‘dry,’ ‘arid,’ ‘parched,’ ‘desiccated,’ or ‘dehydrated,’ so the deaf can enjoy equivalent distinctions in the gestures of sign language.”

  169 Figures on the incidence of deafness come from “Quick statistics” on the website of the National Institute on Deafness and Other Communication Disorders, http://www.nidcd.nih.gov/health/statistics/quick.htm.

  170 The quotation from Carol Padden and Tom Humphries (“Culture provides a way for Deaf people to reimagine themselves . . .”) appears in Inside Deaf Culture (2005), page 161.

  171 The Gallaudet protests were extensively covered by the mass media; one representative article is Lena Williams, “College for deaf is shut by protest over president,” New York Times, March 8, 1988. The Deaf President Now! story has since been told in depth in Jack Gannon, The Week the World Heard Gallaudet (1989); Katherine A. Jankowski, Deaf Empowerment: Emergence, Struggle, and Rhetoric (1997); and John B. Christiansen and Sharon N. Barnartt, Deaf President Now!: The 1988 Revolution at Gallaudet University (2003).

  172 Gould’s resignation was described in David Firestone, “Chief executive to step down at deaf center,” New York Times, June 22, 1994.

  173 This passage is based on my interview with Lewis Merkin in 1994 and subsequent personal communications. In addition to acting, Merkin is a staff interpreter with the NYC Department of Education, a member of the Board of Directors of the Registry of Interpreters for the Deaf, and a playwright, author of Language of One. He was quoted in Patrick Healy’s “Hearing man in deaf role stirs protests in New York,” New York Times, October 14, 2009.

  174 All quotations by MJ Bienvenu come from my interviews with her in 1994 and subsequent communications.

  175 For more information on the genes and epigenetic influences that contribute to deafness, see Lilach M. Friedman and Karen B. Avraham, “MicroRNAs and epigenetic regulation in the mammalian inner ear: Implications for deafness,” Mammalian Genome 20, nos. 9–10 (September–October 2009); and A. Eliot Shearer et al., “Deafness in the genomics era,” Hearing Research 282, nos. 1–2 (December 2011).

  176 Information on the genetics of deafness can be found in Kathleen S. Arnos and Pandya Arti’s chapter, “Advances in the genetics of deafness,” in The Oxford Handbook of Deaf Studies, Language, and Education, edited by Marc Marschark and Patricia Elizabeth Spencer (2003); Mustafa Tekin, Kathleen S. Arnos, and Arti Pandya, “Advances in hereditary deafness,” Lancet 358 (September 29, 2001); and W. Virginia Norris et al., “Does universal newborn hearing screening identify all children with GJB2 (Connexin 26) deafness?: Penetrance of GJB2 deafness,” Ear & Hearing 27, no. 6 (December 2006). Also useful are two recent review articles on the practical applications of genetic research: Marina Di Domenico et al., “Towards gene therapy for deafness,” Journal of Cellular Physiology 226, no. 10 (October 2011); and Guy P. Richardson, Jacques Boutet de Monvel, and Christine Petit, “How the genetics of deafness illuminates auditory physiology,” Annual Review of Physiology 73 (March 2011).

  177 Connexin 26 mutations on GJB2 were first reported in David P. Kelsell et al., “Connexin 26 mutations in hereditary non-syndromic sensorineural deafness,” Nature 357, no. 6628 (1997).

  178 Syndromal forms of deafness include Usher syndrome, Pendred syndrome, and Waardenburg syndrome; information on all three can be found on the website of the National Institute on Deafness and Other Communication Disorders, http://www.nidcd.nih.gov/health/hearing/Pages/Default.aspx. The scientifically minded may also be interested in the following literature reviews: Denise Yan and Xue Z. Liu, “Genetics and pathological mechanisms of Usher syndrome,” Journal of Human Genetics 55, no. 6 (June 2010); Véronique Pingault et al., “Review and update of mutations causing Waardenburg syndrome,” Human Mutation 31, no. 4 (April 2010); and Aigerim Bizhanova and Peter Kopp, “Genetics and phenomics of Pendred syndrome,” Molecular & Cellular Endocrinology 322, nos. 1–2 (June 2010).

  179 For authoritative background reading on gap junctions and their role in deafness, see Regina Nickel and Andrew Forge’s entry in the Encyclopedia of Life Sciences (ELS), “Gap junctions and connexins: The molecular genetics of deafness” (2010); and H.-B. Zhao et al., “Gap junctions and cochlear homeostasis,” Journal of Membrane Biology 209, nos. 2–3 (May 2006).

  180 Increases in deafness due to assortative mating are discussed in Kathleen S. Arnos et al., “A comparative analysis of the genetic epidemiology of deafness in the United States in two sets of pedigrees collected more than a century apart,” American Journal of Human Genetics 83, no. 2 (August 2008); and Walter J. Nance and Michael J. Kearsey, “Relevance of connexin deafness (DFNB1) to human evolution,” American Journal of Human G
enetics 74, no. 6 (June 2004).

  181 The Hittites are mentioned in the article by Arnos cited above. An additional, more detailed source is M. Miles, “Hittite deaf men in the 13th century B.C.” (2008). Descendants of the Hittites in modern Anatolia continue to possess the 35delG mutation; see Mustafa Tekin, “Genomic architecture of deafness in Turkey reflects its rich past,” International Journal of Modern Anthropology 2 (2009).

  182 The quotation from Nancy Bloch about the discovery of the GJB2 gene appears in Denise Grady, “Gene identified as major cause of deafness in Ashkenazi Jews,” New York Times, November 19, 1998.

  183 The quotation from Humphrey-Dirksen Bauman (“The question of what lives are worth living . . .”) comes from Open Your Eyes: Deaf Studies Talking (2008), page 14.

  184 All quotations from Christina Palmer come from my interview with her in 2008 and subsequent personal communications. Palmer is an associate professor of psychiatry and biobehavioral sciences and an assistant professor-in-residence of human genetics at the UCLA School of Medicine, specializing in genetic counseling for deafness. With Patrick Boudreault, she is principal coinvestigator of the Deaf Genetics Project and coauthor of its final report, “Deaf adults’ reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal genetic counseling and testing study,” Journal of Deaf Studies & Deaf Education 15, no. 3 (Summer 2010).

  185 The Whorf-Sapir hypothesis was originally proposed by Benjamin Lee Whorf, whose writings have been anthologized in Language, Thought, and Reality: Selected Writings of Benjamin Lee Whorf (1956). Chris Swoyer, “The linguistic relativity hypothesis” in The Stanford Encyclopedia of Philosophy (2003) provides a convenient summary.

  186 I met and interviewed William Stokoe in 1994.

  187 The MJ Bienvenu quotation (“We do not want or need to become hearing . . .”) comes from her article “Can Deaf people survive ‘deafness’?” in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001), page 318.