“gradually giving way to a more nuanced view”: Paludneviciene and Leigh, Cochlear Implants: Evolving Perspectives, vii. See also Irene W. Leigh, A Lens on Deaf Identities (New York: Oxford University Press, 2009).
CHAPTER 27: FROG IN HONG KONG
For personal chapters, I relied on my journals, recollections of events, and files of reports about Alex from audiologists, doctors, speech therapists, and teachers. I also interviewed some of the professionals who have worked with Alex over the years.
ACKNOWLEDGMENTS
Writing this book has been a deeply personal endeavor. In a sense, I began when Alex was born. I just didn’t know it for a while. That leaves an awful lot of people to acknowledge—it’s humbling to attempt to list everyone who has helped you or your child, and I’ve had to accept that it can’t be done. So I’d like to begin by saying a sincere thank-you that is no less heartfelt for being general to the many people who have touched my life and Alex’s over the past ten years. We have been exceedingly fortunate in our family and friends, and in the professionals who have worked with us—doctors, audiologists, therapists, teachers, and so on. Our support network has been deep and wide, and I am grateful for it every day.
I’m also indebted to the many people—both those I met and those I did not—who, collectively, have contributed so many hours and years to making the cochlear implant possible. In spite of the complications and imperfections that I describe in the book, this piece of technology actually did change my life, Mark’s life, and, of course, Alex’s life. To say something changed your life is a phrase that is thrown around too casually these days, but in this case, it is true. Thank you.
Now to the specifics: Thank you to Helen Halverson and all the warm, nurturing women who worked at our beloved Berkeley Carroll Child Care Center. Thank you to Barry Price and everyone at Premier Pediatrics, to Bernard and Linda, our first therapists, to Jay Dolitsky, George Alexiades, Jessica Lisogorsky, Tracey Vytlacil, Sabrina Vitulano, Katelyn Stoehr, Jillian Levine, Yvette, Melissa, and everyone at New York Eye and Ear Infirmary’s Children’s Hearing Institute, but especially Jessica O’Gara and Lisa Goldin, for their sustained care and attention, and Simon Parisier, for his wisdom and care not just for us but also for generations of families. Thank you Karen London for calling when I most needed to hear from you. Thank you to Teresa Boemio and everyone at Clarke New York, especially Melissa Arnott, Shari Rose, Janet Ellwood, Shauna Rogers, Alison Gregge, Anne Carney, and Lori Chalom. Thank you to Laura Reisler and everyone at Park Slope Communication Center. Thank you to David Spritzler and Karen Louick—we are so lucky to have you both working with Alex.
At Berkeley Carroll, there are so many people who make the school the stimulating and nurturing place that it is, and I am grateful to you all. Thank you particularly to Alex’s teachers (through fourth grade): Norah Breen, Victoria Nachimson, Sherri Paller, Sarah Layden, Christine Eddis, Kate Keim, Rachel Cohen, Andrew Ahmadi, Mark Durbak, and all the specialists, especially Don Militello. And thank you to the administrators who always thought first about what was right for Alex: Ben Chant, Ellen Arana, Pam Cunningham, David Egolf, and Bob Vitalo. In Hong Kong, thank you to Riz Farooqi, Jill Kaufman, Gretchen Loughran, Bonnie Lim, Toni Bain, and Zoe Deane (boosh!).
Once I began to contemplate actually writing this book, one of the first people I talked to was John Niparko, whose graciousness and enthusiasm got me off to a good start—that it was also a slow one was entirely my fault. Not everyone I subsequently interviewed shows up in the manuscript, but each helped me frame the issues and understand things just a little better. Thank you to Nancy Mellon and the excellent people at the River School, David Ryugo, Charles Limb, Jane Madell, Scott Stauffer, Elissa Newport, Ted Supalla, Daphne Bavelier, Peter Hauser, Carol Padden, Karen Emmorey, David Pisoni, and Marc Marschark. At AG Bell, thanks to Don Goldberg, Alexander Graham, Kathleen Treni, Susan Boswell, Garrett Yates, and Catherine McNally. Thanks to Mark Leekoff, and Debi and David Leekoff for sharing their story. I was fortunate and grateful to spend a day with Bill House, who passed away in December 2012. I thank him posthumously for his time and his trust. Thanks also to David House, John House, and Paulette Fiedor. Thanks to Mike Merzenich, whose interest in my project was so encouraging, and to Don Eddington and Paula Tallal. Thank you to Michael Dorman, Sarah Cook, John Ayers, and everyone in the Dorman lab. In Melbourne, heartfelt thanks to Graeme and Margaret Clark for making me feel so welcome, and to Rob Shepherd, Peter Blamey, Hugh McDermott, Julia Sarant, Karyn Galvin, Richard Dowell, Shani Dettman, Hamish Innes-Brown, and Nick Sinclair for giving me their time.
Thank you to Anu Sharma, Athena Vouloumanos, and everyone in their labs, to Janet Werker, Gina Lebedeva, and Erich Jarvis. Thank you to Helen Neville and everyone in the Neville lab, especially Eric Pakulak, who put up with me graciously for days and then withstood repeated follow-up questions. Thank you to Mario Svirsky and everyone in his lab at Bellevue, and to Greg Hickok, Andrew Oxenham, and Usha Goswami. At Haskins, thank you to Ken Pugh, Steve Frost, Doug Whalen, and Diane Lillo-Martin. Thank you to Jean Mary Zarate, Luc Arnal, Jeff Walker, and everyone in the Poeppel lab. A very special thank-you to David Poeppel, whose intelligence, sense of humor, and patience made the book far stronger than it would otherwise have been.
At Gallaudet, a heartfelt thank-you to Steve Weiner for welcoming me, to Irene Leigh, Angela McCaskill, Sam Swiller, Josh Swiller, Matthew Bakke, and Beth Benedict for being willing to talk, and to Catherine Murphy and Kaitlin Luna for their help. And a special thank-you to Janis Cole for extending a hand, so to speak. Thank you, too, to the ASL interpreters who worked with me at Gallaudet, Rochester, and Georgetown.
Quite a few of the people I interviewed graciously reviewed parts or all of the manuscript to confirm my facts and interpretations. Any remaining errors are mine.
Though it was challenging to research this book and master its various subjects, it was even harder to decide how best to frame the stories it tells and weave them together. I am grateful to Russ Galen for getting me started and to my friend Barbara Grossman, who gave me a fervent push just when I thought I might give up. Thanks to Jennifer Rudolph Walsh for connecting me with Dorian Karchmar, my extraordinary agent, who got it from the start and pulled the very best thinking and work out of me. Thank you, Dorian, for everything.
I am grateful to my editor, Stephen Morrow, who loved this book and cared about Alex from day one, whose enthusiasm was sustaining, and who was always willing to talk things through. Thanks also to Stephanie Hitchcock, Brian Tart (baseball coach extraordinaire), Liza Cassity, and everyone at Dutton, who believed so fervently in the book’s potential. Thank you to Layla Lang for the illustrations.
No working mother goes it alone. Thanks to Marilyn Ling and family, Jacqueline Schuka, Anneli Lukk, Gillian O’Reilly, Katherina Zubryzcki, Ramona Freismuth, Yvonne Hoppe, Sean Donovan, Abby Browde, Henry Schwab, Pia Senoron, and Juliet Curammeng for taking such good care of the boys over the years. A heartfelt thank-you to Jessica Barthel for coming into our lives not once but twice, for loving Alex so very much, and for making it possible for me to have the space and the time to write this book.
Thank you to Moira Bailey for listening, for reading, for checking in, to Jenny McMahon for being such a faithful friend and sharing the agony and the ecstasy, to Amy and Tom Jakobson (and Linus and especially Nina!), and Elizabeth Schwarz (and the Firestone boys), who have all been there for me and Alex specifically and for the Jusths in general from the start, and to Stephanie Holmes, Allan Denis, Audrey Denis, and Christian Denis for making us feel like family. Thanks to Judy Warner and Max Berley for putting me up repeatedly in Washington. Thanks to Stella and Tony Biniaris for practically adopting Alex and to all of my Hong Kong friends for the welcome, the wine, and the walks. Back in Brooklyn, thanks to all the members of the Upswing Club, with whom I feel such a deep connection. You kept me going at critical junctures. Now I might actually have time for dinner.
Thanks to all the Denwor
ths and Jusths for everything, and especially my mother, Joanne Denworth, for her constant support.
Jake, Matthew, and Alex: I am grateful for your love, your intelligence, and your laughter. You should know that I love being your home base. Jake and Matty, thank you for looking after Alex and teaching him the ways of the Justh brothers. Alex, thank you for displaying such courage, for inspiring me, and for letting me tell this story.
And finally, to my husband, Mark Justh, my partner in all things, thank you for your sense of humor, your passion, your generosity, and your belief in me and this book. You inspire us all to think big, and you’ve made life an adventure I feel lucky to have shared. Onward to the next challenge and the next twenty-five years!
INDEX
Note: The page numbers in this index refer to the printed version of this book. To find the corresponding locations in the text of this digital version, please use the “search” function on your ereader. Note that not all terms may be searchable. Page numbers in italics refer to illustrations.
Ackerman, Diane, 25
acoustic cues used by children, 46
acoustic glimpse, 206
acoustic-phonetic speech codes, 240
ACT admissions test, 325–26
activism, deaf
emergence of, 114–16
Gallaudet protests, 116–19,
186–89
Gallaudet University protests,
116–19, 186–89, 227, 322, 325
Lexington protests, 177–78
Advanced Bionics, 157–58
age of onset of deafness, 18
air conduction, 30
Alexander Graham Bell Association (AG Bell), 18, 224, 286, 333
alliteration, 277
alphabetic languages and alphabetic principle, 268–70
Alzheimer’s patients, 126
American Asylum (later American School for the Deaf), 60, 63
American Sign Language (ASL)
appreciation for, 21
classes in, 321–22
cognitive benefits of, 293–94
and Deaf culture, 18, 288–94, 318–20, 321, 323, 326, 330–32, 333
dictionary of, 113
early roots of, 60
and education policy, 228
grammar of, 288–89, 321
linguistics of, 288–90
and Marschark, 230–31
morphological processes, 287–88
number of users, 290–91
parenting with, 21
and reading, 278–82
and spoken language acquisition, 15
tutors for, 284–85
American Society for Deaf Children, 281
Americans with Disabilities Act (ADA), 178–79, 227–28
Amman, Johann Conrad, 55–56
anatomy of the ear, 25–27
Anderson, Natasha, 310
animal world, 42
anvil (incus), 26
architecture for the deaf, 322
Aristotle, 52
Arnold, Harold, 69, 70
articulatory-based speech codes, 240
AT&T, 69–70
The Atlantic Monthly, 177
attention
and classroom environment, 256–58
and neuroplasticity, 247–51,
254–56
and sign language, 295
audiograms, 14, 29, 30, 32, 85
audiologists, 24
audiometer, 73
audition and neuroplasticity, 250
auditory brainstem response (ABR) test, 30–31
auditory cortex, 128, 135, 137, 198, 240
auditory-motor interface, 240
auditory nerve, 27, 127
auditory shadowing, 275
Australian cochlear implants, 217, 302
“autosomal recessive” gene, 86
Ayers, John, 297, 303–4
AzBio sentences, 304–5
baby sign language, 21
Bakke, Matthew, 330–32
balance, 31
Bancroft, Anne, 110
basilar membrane
anatomy of, 26–27
Békésy’s research on, 76–77
and frequencies, 26, 29–30, 31, 101, 128
and hearing evaluations, 29
and hearing loss, 31
implant compared to, 203
role of, 26
Bavelier, Daphne, 232
Bedouin communities, 289
bedtime stories, 277–78
Beethoven’s Nightmare, 310–11
Beginnings, 319
Begley, Sharon, 124, 135
behaviorism, 35
Békésy, Georg von, 75–77, 106
Békésy’s traveling wave, 76–77
Bell, Alexander Graham, 27, 56–57, 61–65, 196
Bell Telephone Laboratories, 69–75, 77, 100, 154–55
Bellugi, Ursula, 287, 289
Benedict, Beth, 281
Berkeley Carroll school, 212–13, 216, 307–10
Bialystok, Ellen, 291, 293–94
biculturalism, 328
Biderman, Beverly, 308, 312
“bilaterals” (double cochlear implant users), 303–6
Bilger, Robert, 106–7, 150
bilingualism
advantages of, 291–94, 333
and age of language acquisition, 251–54
bilingual-bicultural approach, 229, 328
challenges associated with, 279
ineffectiveness of, 231
bimodal hearing, 170–71, 303–6, 310, 338
Bionics Institute (Bionic Ear
Institute), 309
birds, 42–43, 48
Blamey, Peter, 309
Bloomberg, Michael, 291
Bloomfield, Leonard, 34
Boemio, Teresa, 214
bone conduction, 30
bones of the ears, 26
Bonet, Juan Pablo, 54, 56
Bories, Ellen, 153–54
Bortfeld, Heather, 282
bottom-up processing, 200
Brackmann, Derald, 155
Bradley, Ed, 181–82
Bradley, Lynette, 277
Bragg, Bernard, 110, 111
Braidwood family, 59–60
braille, 273
brain, 236–46
capacity to learn, 124
compensatory changes in, 133–37
critical periods in development of, 131–33, 153, 248
deprivation of, 130–33
division of labor, 126–28, 239
effect of deafness on, 133–37, 139
hemispheres of, 252, 271
and language, 236–46, 240, 251–54
language processing model, 236–41
maturation of, 123–26
neural pruning in, 138
neuroimaging technology, 190–96
neurological models of hearing, 241–46
neurons of, 124, 126, 197
and reading, 271, 274–75
sensitive periods of, 131–33, 137–39
simulation vs. deprivation of, 128–29
See also plasticity of the brain
brain stem, 127
Broca’s area, 236–38
Bruce, Robert, 63
Bryant, Peter, 277
Cajal, Santiago Ramón y, 131
California, 270–71
Camus, Albert, 334
Canlon, Barbara, 77
Casterline, Dorothy, 112, 113
categories of hearing loss, 17
The Cat in the Hat (Dr. Seuss), 246
causes of hearing loss, 85–88
Center for Hearing and Communication, 176, 286
Center for Reading and Language Research, 268
central auditory system, 126–28, 127
Central Institute for the Deaf, 225–26
Charlotte’s Web (White), 271
children
brain maturation of, 123–26
capacity to learn, 124
cues used by, 46–48
Deaf community on implantatio
n of, 158, 179–83, 328
earliest implant recipients, 175–77, 181–83
ethical considerations regarding implants, 174–75
FDA approval of implants for, 158, 176, 179, 183
language acquisition of, 34–35, 37–39
milestones in, 6–7, 31
multilingualism of, 45–46
native language of, 45–46
original language generation of, 42
and parents’ vocabulary, 39–41
preference for speech, 45
and reading skills, 277–78
researchers’ interest in, 173–74, 175
and sensitive periods for hearing and brain development, 137–39
and sign language, 47
and speech perception, 43–45
Children of a Lesser God (1987), 116, 321
children of deaf adults (CODAs), 114–15
Chomsky, Noam, 34–35
Christiansen, John, 328
civil rights movement. See activism, deaf
Clark, Graeme
background of, 141–43
and Cochlear Corporation, 157,
160, 176
development of implant, 140–41, 143–44
first recipients of implants, 144–50
and pediatric patients, 173–74, 175
speech processing program of, 147–48, 204
Clarke, John, 61
Clarke School, 61, 82–85, 122,
210–13, 286
class divisions and language acquisition, 39–41
classical music, 308
classroom environments, 255. See also education
Clerc, Laurent, 60
cochlea
anatomy of, 26–27
and auditory nerve, 127
Békésy’s research on, 76–77
and electrode placement, 220–21
in Mondini dysplasia/deformity, 87
role of, 26
Cochlear Corporation, 157, 160, 176. See also Clark, Graeme
Cochlear Implant Lab, 297
cochlear implants, 161
activation of, 166–69
and age of recipients, 225
and Alex’s hearing loss, 209, 260, 264, 285–86
ASL sign for, 180
and attention, 258
Australian device, 142–50, 160, 302
barriers to the market, 156–57
Bilger report on, 106–7, 175
I Can Hear You Whisper Page 38