Far From the Tree

by Solomon, Andrew

  From Martin et al.: “This study investigated factors that affect the development of positive peer relationships among deaf children with cochlear implants. Ten 5- to 6-year-old deaf children with implants were observed under conditions varying peer context difficulty in a Peer Entry task. Results revealed better outcomes for deaf children interacting in one-on-one situations compared to interactions including two other hearing children and better performance among girls than boys. In addition, longer duration of implant use and higher self-esteem were associated with better performance on the Peer Task, which was in turn related to parental reports of children’s social functioning outside the experimental situation. These findings contribute to the growing literature describing the benefits of cochlear implantation in the areas of communication and socialization, while pointing to interventions that may enhance deaf children’s social competence.”

  From Punch and Hyde: “Psychosocial factors, including socioemotional well-being, peer relationships, and social inclusion with hearing and deaf peers, are increasingly becoming a focus of research investigating children with cochlear implants. The study reported here extends the largely quantitative findings of previous research through a qualitative analysis of interviews with parents, teachers, and pediatric cochlear implant users themselves in three eastern states of Australia. We interviewed 24 parents, 15 teachers, and 11 children and adolescents. The findings displayed commonalities across the three groups of participants, indicating positive experiences around the children’s psychosocial development with their cochlear implants, but also ongoing difficulties communicating in groups of people and problems related to social skills. Some children had little contact with other deaf children (with or without cochlear implants) despite parents and teachers perceiving such contact beneficial. Children attending schools where there were other deaf children valued friendships with both deaf and hearing peers. Adolescence was a particularly difficult time for some as they struggled with feelings of self-consciousness about their deafness and external cochlear implant equipment and worries around friendships, dating, and their future place in the world. Recommendations for practice and further research are made.”

  286 J. William Evans used the phrase culturally homeless in “Thoughts on the psychosocial implications of cochlear implantation in children,” in Cochlear Implants in Young Deaf Children, edited by E. Owens and D. Kessler (1989), page 312, as cited in Harlan Lane, “Cultural and infirmity models of deaf Americans,” Journal of the American Academy of Rehabilitative Audiology 23 (1990), page 22.

  287 References to physical enhancement as “cyborg” occur in Brenda Jo Brueggemann, “Think-between: A deaf studies commonplace book,” in Open Your Eyes: Deaf Studies Talking, edited by Humphrey-Dirksen Bauman (2008), page 182: “Even the technology in hearing aids, FM systems, real-time captioning, video conferencing, instant messaging, the Internet, and e-mail matters in the cyborg mix here” (“here” being Gallaudet). See also James L. Cherney, “Deaf culture and the cochlear implant debate: Cyborg politics and the identity of people with disabilities,” Argumentation & Advocacy 36, no. 1 (Summer 1999).

  288 The study in which two-thirds of parent-participants reported no resistance by their children to using implants was conducted at the Gallaudet Research Institute and reported in John B. Christiansen and Irene W. Leigh, Cochlear Implants in Children: Ethics and Choices (2002), page 168. A generally positive attitude toward implants is also reported in John B. Christiansen and Irene W. Leigh, “Children with cochlear implants: Changing parent and deaf community perspectives,” Archives of Otolaryngology & Head and Neck Surgery 130, no. 5 (May 2004); and Alexandra Wheeler et al., “Cochlear implants: The young people’s perspective,” Journal of Deaf Studies & Deaf Education 12, no. 3 (Summer 2007).

  289 This passage is based on my interview with Barbara Matusky in 2008 and subsequent communications. Barbara is coordinator of the Parent Links Program and family-support provider for deaf outreach at the Family Focus Resource & Empowerment Center at California State University, Northridge.

  290 Maryland School for the Deaf organizational website: http://www.msd.edu.

  291 Kathryn Woodcock expressed her dissatisfaction with the disapproval of many in the Deaf community of the use of speech and hearing by other Deaf people in “Cochlear implants vs. Deaf culture?” in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001), page 327.

  292 The quotation from Irene Leigh comes from A Lens on Deaf Identities (2009), page 21.

  293 Quotations from Josh Swiller occur on pages 14–15 and 100–101 of The Unheard: A Memoir of Deafness and Africa (2007). His personal website is at http://joshswiller.com. See also Jane Brody’s interview with Swiller, “Cochlear implant supports an author’s active life,” New York Times, February 26, 2008.

  294 The first paper documenting the finding that sharks regenerate receptive hair cells is Jeffrey T. Corwin, “Postembryonic production and aging in inner ear hair cells in sharks,” Journal of Comparative Neurology 201, no. 4 (October 1981). Further research is reported by Corwin in “Postembryonic growth of the macula neglecta auditory detector in the ray, Raja clavata: Continual increases in hair cell number, neural convergence, and physiological sensitivity,” Journal of Comparative Neurology 217, no. 3 (July 1983); and in “Perpetual production of hair cells and maturational changes in hair cell ultrastructure accompany postembryonic growth in an amphibian ear,” Proceedings of the National Academy of Science 82, no. 11 (June 1985).

  295 Regeneration of cochlear hair cells in birds was first reported in Douglas A. Cotanche, “Regeneration of hair cell stereociliary bundles in the chick cochlea following severe acoustic trauma,” Hearing Research 30, nos. 2–3 (1987).

  296 Early experiments with the use of retinoic acid to stimulate hair cell regeneration are described in M. W. Kelley et al., “The developing organ of Corti contains retinoic acid and forms supernumerary hair cells in response to exogenous retinoic acid in culture,” Development 119, no. 4 (December 1993). Retinoic acid and calf serum were administered to rats by Philippe P. Lefebvre et al., “Retinoic acid stimulates regeneration of mammalian auditory hair cells,” Science 260, no. 108 (April 30, 1993).

  297 For an example of work by Staecker’s group, see Mark Praetorius et al., “Adenovector-mediated hair cell regeneration is affected by promoter type,” Acta Otolaryngologica 130, no. 2 (February 2010).

  298 Further research on the cultivation of auditory hair cells and their introduction into living organisms is reported in Huawei Li et al., “Generation of hair cells by stepwise differentiation of embryonic stem cells,” Proceedings of the National Academy of Sciences 100, no. 23 (November 11, 2003); and Wei Chen et al., “Human fetal auditory stem cells can be expanded in vitro and differentiate into functional auditory neurons and hair cell-like cells,” Stem Cells 2, no. 5 (May 2009). For a general review on the state of research into hair cell regeneration, see John V. Brigande and Stefan Heller, “Quo vadis, hair cell regeneration?,” Nature Neuroscience 12, no. 6 (June 2009).

  299 Exploring potential gene therapies to promote the growth of auditory hair cells: Samuel P. Gubbels et al., “Functional auditory hair cells produced in the mammalian cochlea by in utero gene transfer,” Nature 455, no. 7212 (August 27, 2008); and Kohei Kawamoto et al., “Math1 gene transfer generates new cochlear hair cells in mature guinea pigs in vivo,” Journal of Neuroscience 23, no. 11 (June 2003).

  300 The ATOH1 gene figures large in Shinichi Someya et al., “Age-related hearing loss in C57BL/6J mice is mediated by Bak-dependent mitochondrial apoptosis,” Proceedings of the National Academy of Sciences 106, no. 46 (November 17, 2009).

  301 The transduction channel is the focus of Math P. Cuajungco, Christian Grimm, and Stefan Heller, “TRP channels as candidates for hearing and balance abnormalities in vertebrates,” Biochimica et Biophysica Acta (BBA)—Molecular Basis of Disease 1772, no. 8 (August 2007).

  302 Vaccine researcher Stanley A. Plotkin describes t
he history of rubella in the United States and attempts to staunch it in “Rubella eradication?,” Vaccine 19, nos. 25–26 (May 2001).

  303 Marvin T. Miller is quoted in Monica Davey, “As town for deaf takes shape, debate on isolation re-emerges,” New York Times, March 21, 2005.

  304 The comment that isolationism is no longer fashionable comes from Tom Willard, “N.Y. Times reports on proposed signing town,” Deafweekly, March 23, 2005.

  305 Statistics on the number of ASL users come from the Gallaudet University Library; see Tom Harrington, “American Sign Language: Ranking and number of users” (2004), http://libguides.gallaudet.edu/content.php?pid=114804&sid=991835.

  306 The 432 percent increase in ASL courses in a decade is documented in Elizabeth B. Welles, “Foreign language enrollments in United States institutions of higher education, Fall 2002,” Profession (2004).

  307 For a representative work promoting teaching sign language to babies, see Joseph Garcia, Sign with Your Baby: How to Communicate with Infants Before They Can Speak (2002).

  308 The term Deafhood was coined by the British Deaf activist Paddy Ladd, author of Understanding Deaf Culture: In Search of Deafhood (2003).

  309 The quotation from Edna Edith Sayers decrying the trivialization of sign language and its appropriation by hearing persons occurs in Deaf World: A Historical Reader and Primary Sourcebook, edited by Lois Bragg (2001), page 116.

  310 The passage by Harlan Lane (“The relation of the hearing parent to the young deaf child . . .”) occurs in The Mask of Benevolence (1992).

  311 Jack Wheeler’s remarks appear in a Deafness Research Foundation fund-raising brochure, “Let’s Talk About Conquering Deafness” (2000).

  312 Lawrence Hott and Diane Garey commented that “deafness is almost always one generation thick” in their film, Through Deaf Eyes (2007), which is available on DVD from Gallaudet University. The phrase culture of converts was first used by Frank Bechter in his essay “The deaf convert culture and its lessons for deaf theory,” in Open Your Eyes (2008), pages 60–79.

  313 Rob Roth is currently program coordinator of the Advancing Deaf & Hard of Hearing in Computing program at the University of Washington; he also manages UW’s National Support Service Provider Pilot Project, developing a curriculum to train support service providers and deaf-blind persons.

  314 From the introduction by Aina Pavolini to Amadou Hampâté Bâ, The Fortunes of Wangrin (1999), page ix: “After the independence of Mali in 1960, he formed part of his country’s delegation to the UNESCO General Conference held that year in Paris; it was on this occasion that he made his passionate plea for the preservation of Africa’s heritage with the famous statement, ‘En Afrique, quand un vieillard meurt, c’est un bibliothèque qui brûle’ (‘In Africa, when an old person dies, it’s a library burning down’).”

  315 Estimates on the disappearance of languages come from Nicholas Evans, Dying Words: Endangered Languages and What They Have to Tell Us (2009); Evans’s words come from Nicholas Evans and Stephen C. Levinson, “The myth of language universals: Language diversity and its importance for cognitive science,” Behavioral & Brain Sciences 32 (2009), page 429.

  316 For more commentary on the demise of Sign, see Lou Ann Walker, “Losing the language of silence,” New York, January 13, 2008.

  317 My first book was The Irony Tower: Soviet Artists in a Time of Glasnost (1991).

  318 Carol Padden’s question (“How can two conflicting impulses exist . . .”) occurs in Inside Deaf Culture (2005), page 163.

  III: Dwarfs

  319 My primary sources for much of this chapter are Betty M. Adelson, Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005) and The Lives of Dwarfs: Their Journey from Public Curiosity toward Social Liberation (2005).

  320 Proposals for towns for little people are discussed in John Van, “Little people veto a miniaturized village,” Chicago Tribune, June 16, 1989; and Sharon LaFraniere, “A miniature world magnifies dwarf life,” New York Times, March 3, 2010.

  321 Victor A. McKusick was the founder of the discipline of medical genetics, and the leading investigator in the field of dwarfism among the Amish. For an accessible introduction to both Ellis–van Creveld syndrome and cartilage hair hypoplasia, see his review “Ellis–van Creveld syndrome and the Amish,” Nature Genetics 24 (March 2000). Shortly before his death in 2008, he published a professional memoir, “A 60-year tale of spots, maps, and genes,” Annual Review of Genomics & Human Genetics 7 (2006).

  322 Because dwarfism is often not apparent at birth and does not always require medical intervention, calculations of incidence based on hospital records are inadequate, and even experts on dwarfism tend to offer figures rather tentatively. The renowned geneticist Dr. Victor McKusick told Betty Adelson in 1983 that he estimated that there were several million people in the world with dwarfism; see Betty M. Adelson, The Lives of Dwarfs (2005), pages 128–29. Joan Ablon comments that numbers range from twenty thousand to a hundred thousand, and quotes Charles Scott, a geneticist with a specialty in dwarfism, who estimated numbers at twenty thousand to twenty-five thousand; see Joan Ablon, Little People in America: The Social Dimension of Dwarfism (1984). Achondroplasia is said to occur in one in twenty thousand births, so if there is an American population of 318 million people, there should be about sixteen thousand Americans with achondroplasia, and Adelson told me that if you include all forms of skeletal dysplasia, the number approximately doubles, which would indeed give a number around thirty thousand, though she pointed out that this does not include hypopituitary disorders, Turner syndrome, juvenile arthritis, kidney disease, and various iatrogenic conditions, for which there are no precise figures; see Betty M. Adelson, Dwarfism (2005), pages 21–23. LPA has a membership of more than six thousand, some of whom are average-statured family members of dwarfs. With all of this in mind, it’s impossible to say what proportion of dwarfs belong to LPA, but it seems likely that it is upward of 10 percent.

  323 Betty Adelson’s statement “The only permissible prejudice in PC America is against dwarfs” and subsequent statements from her, unless otherwise noted, are from correspondence and personal interviews conducted between 2003 and 2012.

  324 The quotation from Mary D’Alton (“. . . you can fix that, right? . . .”) comes from a personal interview in 2010.

  325 This passage is based on my interview with Mary Boggs in 2003.

  326 William Hay recalled his visit with a general in Deformity: An Essay (1754). On page 16, Hay described himself as a hunchback, “scarce five Feet high”—quite possibly a person with diastrophic dysplasia. He was also a member of the House of Commons. With the phrase “a worm and no man,” Hay was quoting from the Bible, Psalms 22:6: “But I am a worm, and no man; a reproach of men, and despised of the people.” For a recent article about Hay, see “William Hay, M.P. for Seaford (1695–1755),” Parliamentary History 29, suppl. s1 (October 2010).

  327 Betty Adelson refers to Woody Allen’s theory of the essential funniness of the word dwarf on page 6 of Dwarfism: Medical and Psychosocial Aspects of Profound Short Stature (2005). Allen’s fondness for dwarf is apparent in The Complete Prose of Woody Allen (1991), which contains numerous examples of the word used in a humorous context.

  328 116 Two centuries ago, William Wordsworth described the freak show at Bartholomew Fair in his epic The Prelude, Book 7 (1805), lines 706–21;

  All moveables of wonder, from all parts,

  Are here—Albinos, painted Indians, Dwarfs,

  The Horse of knowledge, and the learned Pig,

  The Stone-eater, the man that swallows fire,

  Giants, Ventriloquists, the Invisible Girl,

  The Bust that speaks and moves its goggling eyes,

  The Wax-work, Clock-work, all the marvellous craft

  Of modern Merlins, Wild Beasts, Puppet-shows,