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The silent debate: the controversy over the cochlear implant and how it is changing the deaf community

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The silent debate: the controversy over the cochlear implant and how it is changing the deaf community

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Content
THE SILENT DEBATE: THE CONTROVERSY OVER THE COCHLEAR
IMPLANT AND HOW IT IS CHANGING THE DEAF COMMUNITY
by
Susan Elizabeth Grant
A Thesis Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(JOURNALISM)
May 2008
Copyright 2008 Susan Elizabeth Grant

ii
DEDICATION
I would like to dedicate this thesis to K.C. Cole, who worked so hard to help
me find my voice, and to Lindsay, who taught me every high school musical song
there is.

iii
TABLE OF CONTENTS
DEDICATION........................................................................................................ ii
ABSTRACT............................................................................................................ iv
MAIN BODY ......................................................................................................... 1
BIBLIOGRAPHY................................................................................................... 27

iv
ABSTRACT
The new generation of young deaf people with cochlear implants, are at the
forefront of a cultural battleground between the hearing and deaf communities over
language and identity. While it would be a struggle to find an amputee deriding the
medical advancements of prosthetic limbs, the deaf community sees the cochlear
implant as a threat to their culture and language. This is because children with
cochlear implants are taught speech and usually sent to regular schools, making the
chances of them learning sign language and being involved in the deaf community
much smaller.
With more and more children receiving cochlear implants each year, the rift
between the hearing and deaf community shows no sign of slowing down. The
cochlear implant is either a medical miracle or an attempt to eradicate a culture,
depending on who is asked. What is certain on both sides, is that it is an agent of
change and a stern reminder that there is nothing more essential, and more coveted,
than human communication.

1
Lindsay's canary-colored princess dress flutters along the wall as she scrambles
down the staircase into the TV room. She pauses at the bottom to readjust her
rhinestone headband, and then continues toward the bubblegum-pink CD player next
to her father's massive flat screen television. She dials the volume up to maximum,
loud enough that the sound of High School Musical throbs out of the speakers like a
cacophony of teenybopper angst. Seven-year-old Lindsay, undeterred by the ear-
splitting tune, cocks her head to the side and listens intently. "Not this one," she says,
pushing the button for the next song. She waits for the blaring sound to begin again
before rolling her eyes and slamming the button once more. "I hate that one," she
explains. Finally, her eyes open wide and she ceremoniously removes her finger from
the machine, walks a few steps back, and throws her hands up in the air. "This one!"
she yells, falling onto the floor and folding into a series of somersaults and back
bends. Even mid-roll, she stays in sync with the lyrics, squealing each line as if Simon
Cowell was at the other side of the room, scorecard in hand.
In many homes, Lindsay's performance would be just one of the many joys of
a 7-year-old's life, but for Caryn and Kyle Behrens, their deaf daughter's improvisa-
tional singing routine is proof that their 4-year long medical journey was not in vain.
"It's like she was living in this cloud and someone came in and just cleared it away,"
Caryn says.
Less than a year ago, Lindsay was implanted with an auditory piece known as
a cochlear implant. This complex device, roughly the size of a large Bluetooth
headset, consists of internal and external electrical components that work together to

2
mimic the functions of a healthy ear, thus allowing a deaf patient the ability to hear
sound, and therefore, learn and interpret spoken language. The implant requires a
moderately invasive surgery followed by years of speech and cognitive educational
therapy.
According to the National Institute for Deaf and Other Communicative
Disorders, more than 59,000 people in the United States have cochlear implants, half
of them under the age of 12. In the mid-90s, the Food and Drug Administration
approved the implant for use in children as young as one. Many parents are now
choosing to have the implant inserted at 9 and 10 months, because they believe that
the earlier their child registers sound, the higher chance they have of learning spoken
language, attending regular schools and becoming a part of the hearing community.
It is a decision no parent takes lightly, says Dr. Beth White, an audiologist at a
children's hospital in the Midwest. "This is one of the few voluntary operations with
such incredible cultural implications," White says. "Having cochlear implant surgery
means the role the child will play in the deaf community is immediately changed."
The new generation of young deaf people with cochlear implants are at the
forefront of a cultural battleground between the hearing and deaf communities over
language and identity. While it would be a struggle to find an amputee deriding the
medical advancements of prosthetic limbs, the deaf community sees the cochlear
implant as a threat to their culture and language. This is because children with
cochlear implants are taught speech and usually sent to regular schools, making the

3
chances of them learning sign language and being involved in the deaf community
much smaller.
Whichever road a parent decides to take with their deaf child has its own set of
obstacles to face, whether it is discrimination from the hearing world, or learning
language in a new and unique way. Each child has different challenges to face as they
learn to live in a world filled with sound.
As the implanting in children has increased in popularity, so has the concern
within the deaf community that their culture is being torn in half. Lawrence Fleischer,
head of the Deaf Studies program at California State University Northridge, says
children like Lindsay are "innocent victims" of the medical industry, whose parents
are being sold on the idea their children's lives will be limited if they learn sign
language. The deaf community refers to discrimination against them as audism, and
Fleischer says cochlear implants have made raising awareness about audism extremely
difficult. "Most people don't even realize the discrimination against the deaf
community even exists, because they don't come in contact with deaf people very
often," Fleischer says.
The discrimination of the deaf community is not as blatant as prejudice based
on skin color, gender or sexual orientation. While there are deaf people in every
culture around the world, the entire structure of human society relies heavily on sound,
from spoken language and music to natural sounds like thunder and running water.
The deaf culture has developed their language and cultural history literally in silence,
and they often feel invisible because of it. "When members of the deaf community are

4
together, there are no barriers," says Elizabeth Bernth, 37 of Carbondale, Illinois, who
has been deaf since age 7. "When hearing people encounter us, all they see is a barrier
because we don't speak."
One cannot simply hold their hands over their ears or sit in a silent room to
know what it is like to be deaf. For someone who has never heard sound, the obstacles
of living in a world where 99% of the population can hear can be incredibly isolating.
This isolation has been intensified not only by the cochlear implant, but by other new
technology like the internet. "When my hearing friends try to send me YouTube
videos or new internet games with sound, I really can't use them," Bernth says. "It
seems like a small thing, but it can be so frustrating to feel left out."
My own preconceived notions about the deaf community came to the surface
when I interviewed Fleischer in his office in Northridge, California, with the help of a
sign language interpreter. Fleischer sat directly across from me and the interpreter sat
by my side. As he began signing, a wave of confusion and awkwardness came over
me. While Fleischer was the one answering my questions, the person talking to me
was somewhere else. For the first 5 minutes of the conversation, just like Bernth had
told me earlier, all I saw was a barrier. I had not realized before how easy it is as a
hearing person, to innately prefer the sound of spoken language to someone using
sign. Fleischer, seeing my confusion, stops signing for a moment until I turn my head
and look him in the eye.
Fleischer leans back in his chair and begins to tell me about a business
conference he attended several years ago about cochlear implant surgery in children.

5
During a presentation, Fleischer watched as a little deaf girl came up to the stage and
began to tell the story of Goldilocks and the Three Bears in sign language. For several
minutes, the girl signed the story to the both deaf and hearing audience, while an
interpreter told the story out loud. "She was fantastic," says Fleischer, "She really
acted out the characters and at the end she got a nice, cordial applause from the
crowd." Next came in a small boy with a cochlear implant. "He stood there and said,
out loud, 'ball,' over and over again," Fleischer says. "And when he was done the
crowd went wild and gave him a standing ovation." Fleischer leaned forward in his
chair and paused for a moment. "I want to know why saying one word over and over
again is such an accomplishment."
While saying "ball" repeatedly may not mean much to Fleischer, the cultural
divide the cochlear implant has created in the deaf community has long standing
implications. In fact, the definition of deaf has changed even within the deaf
community. The deaf population has now been split in two between so-called "big D
Deaf" people--those who only communicate in sign language and immerse themselves
in the deaf culture, and "small d deaf" people, those who are physically deaf, but
through amplified devices live their lives mostly in the hearing culture. These two
subcultures of the deaf population have been at odds for the last few decades over
whether or not new medical technology like the cochlear implant, should be embraced
as a bridge between the hearing and deaf worlds or rejected as a form of audism.
While most deaf people believe there will always be an active "big D Deaf"
culture, they see the cochlear implant as a glaring reminder that the majority of the

6
world believes being deaf is a medical problem to be fixed, not a culture to be
embraced. "I am always having to remind doctors that my being deaf is not a medical
problem," says Bernth. "It's who I am."
The height of the tension between the two deaf cultures took place at Gallaudet
University, the renowned deaf college in Washington, DC. In 2000, students and
faculty vehemently protested the Board of Trustee's decision to nominate Jane K.
Fernandes as the school's next president. Although she was born deaf, she used spoken
language and did not learn sign language until she was 23-years-old. The members of
the university believed she did not represent the deaf community well enough.
Hundreds of students were arrested in the protests on the front steps of the campus,
which continued on and off through 2006, and ultimately led to Fernandes' withdrawal
from the position in 2007. Fernandes' creation of a cochlear implant education center
during her troubled tenure further outraged students and faculty, insinuating to
students and faculty that she was not a supporter of sign language. "They are still
trying to figure things out over there," Bernth says. "It's difficult because our culture is
so very, very important to us."
While Fleischer likened the simple speech of the young boy at the conference
to that of a parrot, parents, doctors and other proponents of the cochlear implant,
consider it to be proof the device can make the educational and social opportunities of
a deaf child the same as those of a hearing child. To them, speech is the bridge to the
hearing community and to an easier, more successful life for the child. Even in the
early stages of the implant's development in the 1970s, doctors discovered that even

7
undecipherable noises produced by the device could greatly improve the everyday
lives of a deaf person. While the sounds they heard were not complete words, the
implant still gave them the ability to hear a siren, a crying bab,y and even made it
easier for them to read lips.
Often called "bionic ears," the cochlear implant is different than a hearing aid
because it does not amplify sound, but instead, stimulates the auditory nerves in the
ear mimicking the electrical impulses of damaged hair cells. In a healthy ear, more
than 15,000 hair cells surrounding the cochlea vibrate and send electrical impulses to
the auditory nerve and the brain creating sound. When these hair cells are damaged,
they cannot vibrate, so when sound waves enter the ear, the brain does not register
them. If only some of the hair cells are damaged it causes hearing loss, and if they are
all damaged it causes deafness. There are many ways hair cells can be damaged,
including bacterial meningitis, rubella and even heredity.
Dr. William House implanted a cochlear implant into a deaf man by the name
of Charles Grazier in the early 1970s at the House Ear Institute (HEI) in Los Angeles.
This procedure was the culmination of more than 20 years of research and failed
attempts by doctors to create the first primitive cochlear implant. One of the biggest
obstacles doctors had to overcome, was finding a way to keep the electrodes inside the
device from shorting out once placed inside the human body which is 97% water.
Constructing the internal parts of the device out of more durable titanium and platinum
solved this problem. Grazier's device worked, although the sounds he heard were
nothing close to words, but rather muffled noise. Dr. John House, President of HEI,

8
says these muffled sounds transmitted out of earlier implant models allowed a deaf
person reading lips to more clearly differentiate between words that sound different
but appear the same when coming out of someone's mouth. "It made it easier to hold
conversations, but for you and I, it would have just sounded like white noise," he says.
House was a young man when his father and uncle, Dr. Howard House and Dr.
William House, were laying the foundation for modern cochlear implant technology,
and he continues their work today.
In a grainy 1969 video shot shortly after the surgery at HEI, Grazier in his
mustard-yellow sweater, sits quietly next to his wife while holding a brick-size brown
box on his lap connected to his head with long wires. His wife turns to him and speaks
directly into his ear.
"Cowboy," she says. Staring straight ahead he hesitates for only a moment.
"Cowboy," he repeats back.
"The sailboat sailed the seven seas," she says.
"The sailboat sailed the seven seas," he replies.
While Grazier's primitive cochlear implant required a large processor to be
carried around with him, modern devices are only slightly larger than a Bluetooth
headset and fit entirely on the head. The devices consist of six parts that simulate the
electrical impulses needed to turn noise entering the ear into vibrations that the brain
deciphers as sound.
The device consists of two internal components that are inserted behind the ear
at the base of the skull. One is the cochlear device, a circular, magnetic disc roughly

9
the size of a quarter, made of titanium and silicone. Connected to this disc is the
second part, a clear strand of between 16 and 24 electrodes, spaced out like the strands
of a pearl necklace, which are wrapped around the inner ear, or cochlea during
surgery.
The external components of the device include a microphone, transmitter and
speech processor. The transmitter has a circular magnet that is held in place with the
magnetized cochlear device inside the skull. The speech processor and microphone are
attached to the transmitter by a small wire and hooked behind the ear like an earpiece.
The microphone picks up sound waves from the environment, which are
filtered through the speech processor into signals to the transmitter. The transmitter
turns these signals into impulses that are sent inside the skull to the cochlear device.
The electrode strand then collects these impulses and stimulates the auditory nerve,
located inside the inner ear at the base of the cochlea. "This all happens
instantaneously," says House.
Much as a flight simulator cannot faithfully replicate the sensation of flight, a
cochlear implant cannot make the same sounds someone with normal hearing would
hear.
"The best way I can describe it is kind of robotic," says Michael Chorost,
author of Rebuilt, a personal account of his decision to get a cochlear implant after
losing his hearing as an adult. During our interview, Chorost shows me a computer
program that mimics the sound someone with a cochlear implant hears, and while the
pronunciation of each word is very clear, the sentence played back to me is missing

10
the intonations and emphasis of the human voice. "Sixteen electrodes of hearing
cannot compete with thousands of hair cells," says Chorost, who was hard of hearing
as a child and wore hearing aids before going completely deaf in his late 30s.
Not everyone is eligible for an implant. For example, some people are deaf
because they do not have an auditory nerve, therefore, the implant would have nothing
to stimulate. House says the success rate of the cochlear implant is high, but how well
it works in a patient is a very individual thing. "Someone who has been deaf their
whole life and gets it at 30, will not have as good of results as a child who gets it
before the age of two," he says. A person must be profoundly deaf in both ears to get
the implant, not just hard of hearing. This is because if a person can hear sound well
enough to function with hearing aids, they wouldn't get any greater improvement with
cochlear implant. "I usually say that if the person can use a phone, they aren't eligible
for the implant," he says. "You can't be just a little bit deaf, you have to be really
deaf."
The question of how deaf is really deaf has never been black or white, because
deafness is measured on a scale of moderate to severe, not just deaf or not deaf.
Because of this, figures on the deaf population are misleading, since most of the
statistics group, the hard of hearing, and adult on-set deafness is in the same category
as those who were born deaf. The National Center for Health Statistics reported in
2001 that more than 21 million Americans were hearing impaired, but one-third of
them have age-related hearing loss and were not born deaf. A demographics survey

11
done by Gallaudet University found that between 2 and 4 of every 1,000 people are
functionally deaf, but only one out of a thousand was born that way.
Until the invention of the cochlear implant, people who were born deaf or
became deaf at an early age learned to communicate through sign language. Today,
the glue that holds together the "big D Deaf" culture is this form of communication,
known in America as American Sign Language (ASL). ASL is the fourth most
commonly used language in the United States, and is one of hundreds of varieties of
sign language, each one unique to a particular area of the world. Sign language is even
gender specific in some areas. In Dublin, young deaf boys and girls grow up using
different sign movements, and even after a young girl begins dating and learns the
male version, she still uses the female signs when communicating with her girlfriends.
ASL uses a so-called topic-comment formulation that is completely distinct from the
subject-verb-object pattern of English. For example, while the word "family" means a
group of people related to one another in sign language, one would need two elements
to represent this. They would first trace their hands in a circle to show they are talking
about a group of people and then finger spell the letter "f" to signify they are referring
to a family.
Because ASL and other sign languages are grammatically unrelated to English
and other spoken languages, it can make it more difficult for deaf people to learn how
to read. While a hearing child hears the same words he sees on the page, a deaf child
who uses sign is seeing words he has never heard that do not match his language. This
is one of the reasons the cochlear implant has been so popular among children of

12
hearing parents, who want their children to attend regular, also called mainstream
schools, where they can learn to read at the same level, and in the same way, as
hearing students. Barbara Hecht, President of a deaf services organization in Los
Angeles called the Tracy Clinic, says the biggest drawback for sign language is
literacy. "The average reading level for a high school graduate who only uses sign
language is between the 2nd and 4th grade," Hecht says. "We all learn to read using an
auditory process, and with sign language that process is very limited." A 1993 study
by deaf Gallaudet Professor Thomas E. Allen, found that roughly half of deaf students
aged 17 to 18 tested at a 4th grade reading level.
As a deaf person with an advanced degree himself, Fleischer says teachers and
doctors exaggerate the literacy issue. The reason literacy levels are not as high among
the deaf population, Fleischer says, is because there is no official written version of
ASL. "From a very young age, deaf children are forced to read in a language they
don't understand." Fleischer was born deaf, just like his parents, and is the father of
two deaf children, and all of them are well-educated and literate. "My daughter has
never spoken a word in her life," he says. "But she holds a PhD and was never delayed
in school. I can't think of anything more successful than that." The key to teaching a
deaf child reading comprehension and sign language is having a parent who knows
sign language so they can work with them outside of the class, says Fleisher. "I think a
lot of these parents just don't want to learn sign language themselves."
Many hearing parents naturally want their children to attend regular schools,
and when Bernth was a small child growing up in Centralia, Illinois, her mother was

13
no different. Bernth discovered sign language on her own, and says it opened up a
world of belonging she had spent the majority of her childhood searching for. Bernth
has worn hearing aids since she was a toddler, and although she could hear well
enough to learn spoken language, she says she felt like an outsider because her hearing
aids made her look different and she could not hold conversations easily.
Looking back at her 7th grade year at Centralia Junior High, Bernth cringes at
the memory of a year filled with slipping grades, bullies and teachers who did not
seem to care that she was having trouble hearing their instructions during class. "It
was so irritating," Bernth says. "They just let me get by even though they knew I
wasn't learning anything." Although state law required the school to provide services
for Bernth as a special education student, it had not complied. One of the things that
would have helped her was an FM transmitter, which a teacher could wear around his
or her neck in order to amplify their voice to her hearing aid. Her teachers said they
found it annoying. "It's just a little thing the size of an iPod that they slip around their
neck and they just refused." Finally, her frustrated mother filed a lawsuit against the
school demanding they offer her daughter either better services, or another education
option that would.
Shortly after her mother filed the lawsuit, the school year ended and Bernth left
for summer camp. While outside one day, she saw a boy her age signing with his
friend. She was immediately intrigued and asked him where he had learned how to
sign. He told her he went to the Illinois School for the Deaf. "I counted the days down

14
until I could see my mom and tell her what I had learned," Bernth says laughing. "I
had to go there. There was no question about it."
When she started at Illinois School for the Deaf in Jacksonville, Illinois that
fall, she discovered she was more than 2 years behind in reading and math compared
to other students her age. "I owe that school everything," says Bernth, who went on to
college at Gallaudet University. "It changed my life."
While Bernth credits the Illinois School for the Deaf for helping her get back
on the right academic track, her transition into the deaf community did not happen
instantly. Her ability to speak caused the kids at her new school to tease her until she
learned how to sign. Bernth has straddled the world of deaf and hearing her whole life,
and says it created huge identity issues for her as a young adult. "Hearing people are
always confused because I can speak. They don t' think I am really deaf," she says.
Her decision to attend Gallaudet was a decision about which culture she most
identified with. "I never felt completely accepted by the hearing community," Bernth
says. "And then when I got to Gallaudet, I felt like a part of a group for the first time--
they accepted me completely."
Bernth first learned about the cochlear implant while she was attending
Gallaudet, and she says the technology has made the tight-knit deaf community very
uneasy. "There is a lot of fear within the community because we know things have and
are going to continue to change," she says.
As the young children receiving cochlear devices grow older, and begin to
notice their physical differences and possible limitations in speech, Bernth believes the

15
deaf community will have to actively search them out and teach them about their
culture. "They will have spent the first part of their lives learning how to act like
someone who can hear when they really can't," Bernth says. "We have to press into
them what it means to be deaf, and show them there is this whole wonderful culture
and history out there that they weren't ever told about."
While the attitudes of young adults with cochlear implants may be different,
Fleischer believes it is the attitudes of their parents that will need to change the most.
As doctors, teachers and other family members continue to push on parents the idea
that speech is the only acceptable way to communicate, Fleischer says the children are
forced into a strange grey area where they may be able to speak, but they are robbed of
their identity as a deaf person.
This grey area is all Fleischer sees when he learns about 7-year-old Lindsay,
even though less than a year after receiving the cochlear implant, she is reading and
speaking at nearly the same level as other students her age. "Sooner or later she will
realize that she is different and she will grow tired of struggling to hear, read and
understand a language she doesn't need to," he says. Fleischer says the bigger concern
is how she will identify herself as a person as she gets older, and how supportive her
parents will be if she decides to not use a hearing device.
Watching Lindsay do somersaults around the downstairs den, Caryn and Kyle
Behrens are overjoyed with their daughter's progress. They have not told Lindsay
about the deaf community, and Caryn says she is not sure whether or not Lindsay even

16
realizes she is deaf. "We just explain to her that some people need glasses to see
better, and she needs this to hear better," she says.
While grocery shopping in their small suburb of Chicago, Caryn and Lindsay
once noticed two people in the store signing back and forth to one another. "Lindsay
just stared at them for a long time," Caryn says. Instead of being intrigued by the
language like Elizabeth Bernth had been, Lindsay just found it odd. "I tried to explain
to her that they were communicating with one another because they couldn't hear like
she couldn't hear," Caryn says. "She just looked at me and said, 'Why don't they learn
how to talk?'"
When asked if she thinks Lindsay will want to know more about the signing
deaf community someday, Caryn was doubtful she would. "I think it's important for
her to keep in touch with kids who have implants because they have that in common,"
Caryn says. "But she will never really be around people who sign so I don t imagine
that happening."
For now, Lindsay's parents say the implant has done nothing but bring out the
boisterous personality of their daughter, not rid her of a culture. "I feel sorry for the
kids who don't get the device, or who don't get it until later in life," Kyle Behrens says.
"It has made Lindsay's life so much easier and the opportunities for her future so much
brighter."
When Lindsay was 2 ½, her future seemed as bright as any other child her age.
She loved to get up in front of family members and sing the national anthem of her
father's homeland, "O' Canada." Her pronunciation was not very good, and she could

17
not say many words other than that one song. These were developmental delays
noticeable enough for a relative to recommend they take her in for a hearing test.
Looking back, Caryn says they probably noticed that she was reading their lips instead
of actually listening to them, but they ignored it. "She was our first child," Caryn says.
"I don't think we wanted to face the truth."
After visiting an audiologist, Lindsay was diagnosed with progressive hearing
loss, and the Behrens immediately began making plans for her to attend Child's Voice
in Chicago, where she would learn to speak and be around other children with hearing
aids and cochlear implants. Less than a year after starting Child's Voice, she had her
cochlear implant surgery. "I really never considered sign language," Caryn says.
"Nobody else in our family knows sign language, so it just didn't make sense."
Amy Maylsz of Los Angeles faced a similar situation 9 years ago when her
infant son, Kenny, became deaf after contracting meningitis. While Maylsz and her
husband immediately chose to have Kenny undergo the cochlear implant surgery, they
still are not completely sure about their decision. Maylsz imagined that the windows
of opportunity, including college and a career, would close for Kenny if he could not
speak or only associated with members of the deaf community. "We decide to put all
of our eggs into one basket and I am still conflicted about it," she says. Today, Kenny
speaks English very well, but now that he is almost 10-years-old, he is becoming self-
conscious about the transmitter he wears on his head. He has to be careful when
playing sports with his friends in case the implant were to get hit or fall off. "He is
starting to tell me he wishes he was normal," Maylsz says. "It is heartbreaking to hear

18
that." In an effort to give Kenny options about his future as a deaf person, Maylsz and
her husband have decided to have Kenny learn sign language in high school, and if he
chooses to use sign instead of the implant, then so be it. "If he wants to become a part
of the deaf community we would support that completely," she says.
Listening to Lindsay sing Karaoke and watching Kenny play sports are tiny
miracles for the Maylsz and Behrens families, but the real reasoning for them came
down to their children being able to speak and to become members of the hearing
community. However, turning on the implant is not like turning on a light switch.
Language comprehension and development takes years of practice and instruction that
hearing children start getting inside the womb, so children like Lindsay and Kenny are
placed at the beginning of a race that started long before they got there.
The window for learning spoken language closes sharply after the age of 5, so
parents of deaf children have precious little time to decide whether or not the implant
is right for their child. "If you wait until the child is older, oftentimes the brain has
been taken over by other functions and it will be incredibly difficult for them to learn
speech," says House.
Even if they are implanted as a baby, the road to learning speech for a child
with a cochlear implant is a long and bumpy one. Once a child has the device inserted
and turned on, they may be able to hear sound, but they need years of assistance from
teachers, audiologists, speech therapists, and especially their parents while on the path
to speech and comprehension.

19
The different types of education available for children with cochlear implants
versus signing children marks the beginning of the fork in the road for the "big D
deaf" and "small d deaf" communities. Every U.S. state has at least one school for the
deaf where sign language is the predominant form of communication, and the majority
of these state-run schools opened more than 100 years ago. Hard of hearing or deaf
students have the option of attending regular schools as part of the special education
system, but like Bernth, many students find it isolating to be one of the only deaf or
hard of hearing students at their school, so they attend a school for the deaf instead.
When a child receives the cochlear implant, they are instead placed into what
is known as oral-based, or auditory oral, education. They stay in this type of program
until they can speak, read and comprehend language well enough to be mainstreamed
into regular schools, usually around the age of 6.
At the John Tracy Clinic, an oral-based school and deaf services center,
deafness is something to be recognized, embraced and then treated as early as
possible. The clinic says it chose its symbol, the Yucca tree, because of its "ability to
bloom with great beauty despite difficult conditions," a characteristic the clinic
believes deaf children and their parents possess. The Tracy Clinic offers an oral-based
education, also called auditory oral programs, for children with hearing aids and
cochlear implant devices, emphasizing learning spoken language over sign language.
Surrounded by black iron gates that block out the rough areas of downtown
Los Angeles, stands the pristine white buildings of the John Tracy Clinic. The waiting
room area of the clinic is dominated by a huge mural of a little girl sitting on a bench

20
with her Golden Retriever, staring up into the sky and blowing bubbles that stretch out
larger and larger throughout the room. Just behind the little girl's ear is a hearing aid.
Inside each of the bubbles are the names of major donors to the center: Walt Disney,
The Annenberg Foundation, and several movie and television studios. The clinic has
had a long standing relationship with Hollywood ever since famed actor Spencer
Tracy's wife, Louise, started it more than 65 years ago. The couple had a deaf son
named John, and Louise was determined for him to speak, although at the time, it was
rare for deaf children to ever learn anything other than sign language.
When John was a baby in the 1930s, Louise took a class on the East Coast
called the Wright Oral School, and after working with her son for several hours a day,
taught him to speak by the time he was 3-years-old. Louise discovered the Wright
School was going out of business so she bought the rights to the program before
moving to Los Angeles when her husband's acting career took off. For the next few
years, Louise met with a group of mothers in a small cottage on the University of
Southern California campus, and taught them the lessons she learned at the Wright
School. Without the help of a hearing aid or cochlear implant, the mothers would
speak very closely to their child's ears so they could feel the vibrations and see the
way their mouths opened to form words.
In 1942, Louise Tracy opened the John Tracy Clinic, offering free services to
children with hearing loss, and an oral education preschool and kindergarten. Since
that time, more than 250,000 families have used the program either for education,
speech therapy or simply hearing exams. The clinic is available for children from birth

21
to age 5, and any parent can make an appointment, regardless of their insurance or
immigration status. The variety of services the clinic offers today is impressive, from
on-staff audiologists to summer camps for children and their families where nondeaf
siblings can learn more about the cochlear implant.
The rules for participation in the program are simple and unbending: every
child must have an amplified hearing device, and every parent must be involved in
every step of the child's education while at the clinic. If a parent takes a child to the
clinic for auditory screening and he or she is diagnosed as deaf, options for the child
including a cochlear implant, hearing aids or sign language are discussed with the
parent. If the parents do not want their child to have an amplification device, the clinic
will give them a list of local sign language centers and schools, but that is effectively
the end of the Tracy Clinic's services for them. "We do not teach sign language," says
Susie Bernal, Communications Coordinator at the clinic.
"We are different because we teach the parents to teach their children," Bernal
says. "There are sacrifices that the parents must make in order to succeed in this
program." Some of these sacrifices include attending school with their child every
Friday, and attending evening parental education classes every other week at the
clinic.
The goal of the Tracy Clinic, like most other oral programs, is to teach them
spoken language as early as possible, so they can be put into regular school classrooms
as early as possible. The cochlear implant and hearing aids play an important role in
that process. "We believe if you amplify a child early on, they can catch up with other

22
children and move into mainstream education," Bernal says. Between 70% and 80% of
the children at the Tracy Clinic are mainstreamed either into the Los Angeles Unified
School District or a local private school with special services for deaf students.
The cochlear implant has changed everything about the way the Tracy Clinic,
and other oral programs operate. Now that the children can hear sound, not just
vibrations like with the Wright School method, after a few years of education and
therapy, many of them have the same language skills as other kids their age. "These
kids are going off to regular preschools now," Hecht says. "Just 6 years ago, a family
would bring the kid here and they would be here until they were at least 6-years-old,
but not anymore."
Even though more children with implants are being mainstreamed into regular
classes, the amount of work parents, audiologists, speech therapists and teachers must
do with each child puts enormous stress on the family. "It was really intense there for
a while," says Caryn Behrens. "Even now that she is in a regular school, we still are
having to constantly make sure that she isn't falling behind."
When a child is mainstreamed into a regular classroom, in theory, they learn
the same way the other students do, with a teacher speaking to them and them
speaking back. However, it is never that simple. Even when mainstreamed, most
children with implants need several additional years of speech therapy in and outside
of the classroom, and the teachers must also wear FM transmitters to help their voices
carry over to the child in a sometimes loud classroom setting. Still, being

23
mainstreamed means the child is, for all intensive purposes, a part of the hearing
community, which is seen as the ultimate sign of success by their parents.
Because children with cochlear implants have to play catch up with language
retention, they usually have to start their education earlier, and in a more intensive
setting. "A child with normal hearing is learning language all the time, without the
teachers doing anything but speaking and reading to them," says Wendy Adler, School
Coordinator at Child's Voice, an oral school outside Chicago. "For a deaf child, we
have to teach them how to make sense of the sounds they are hearing."
At Child's Voice, this means a 5-day a week school schedule for children 4 to
8-years-old, and shorter sessions for infants and toddlers. All 60 children at Child's
Voice have an amplification device, and 65% of the students have cochlear implants.
The curriculum offers a strong emphasis on cognition, speech, language and auditory
skills. Each child is taken out of the classroom for one-on-one instruction with a
speech pathologist at different intervals throughout the day. Parents meet with teachers
on a regular basis, and several parents are found volunteering nearly every day.
Once a week the school has "hot lunch day," when parents serve pizza, cookies
and soda to the students, and more important, get a chance to hang out together in the
kitchen and discuss their children s advancement. Language progress is a big thing at
Child's Voice, because it is not until a child passes all levels of instruction that they
are eligible to be mainstreamed. For the parents, this is the ultimate goal, the reason
they spend countless hours before work, after school and on the weekends working
with their child to help them learn spoken language.

24
Sitting at the table among dozens of tiny apple juice cartons and piles of pizza
boxes, the mothers and fathers at Child's Voice gear up for the explosion of hungry
toddlers about to pounce through the door. All the parents talk excitedly about their
weekend plans, upcoming birthday parties, and as always, the ever-important subject
of their child's language progression.
But it is not all happy news; for Child's Voice parent Margaret Radomski, it
has been a bad few months. Her son, 3 ½-year-old Christopher, is not progressing.
While Christopher's scores show his pronunciation is good, he is not learning new
words at the same level as other children his age in the program. If Christopher is
delayed at the first stage of the program, Radomski firmly believes he will always be
delayed in language, and all the work they have done with him would have been for
nothing.
Radomski and her husband are from Poland, and the specialists at Child's
Voice, have told them the bilingual environment Christopher is hearing at home could
be confusing him and delaying his progress. Since learning this, the entire family has
been trying to speak only English, although Radomski admits it is hard to do all the
time. "For bilingual families this is a very personal and frustrating thing," she says.
"But I am willing to do anything I feel like time is running out."
Radomski does not know if her son was born deaf. He was not diagnosed until
he was more than 1-year-old. "My first question when I found out he was deaf was,
Where do I learn sign language? " she says. "I couldn't sleep at night because I
couldn't figure out how I was going to teach my whole family sign language."

25
When Radomski learned about the cochlear implants and how they could allow
Christopher to learn spoken language, she immediately signed on, and he was
implanted before the age of 2. "I want him to have the same opportunities as my other
two children," she says. Christopher's deafness, implantation and intense work at
Child's Voice, have entirely changed the way Radomski and her family live. "You
have to change the way you think about raising your child," she says.
The challenges children with cochlear implants face do not disappear once they
are mainstreamed. Carrie Bauza has been the mainstream coordinator at Child's Voice
for a decade, and while she is proud to see the kids go on to regular schools at younger
and younger ages, she admits the transition is as much of a psychological change as a
physical one. Bauza noticed the children lacked certain socialization skills, so last year
she set out to do something about it. "The fact is, a majority of these kids don't realize
they are deaf," she says. "They were missing that extra layer of social skills that allow
their learning environment in their new schools to be successful."
Bauza started self-advocacy classes for the children to complete before leaving
Child's Voice. Bauza focuses on teaching the kids how important it is to let teachers
know when they do not hear something, and how to be a part of large group setting
compared to the small classes at Child's Voice. Bauza also contacts the schools the
children are getting ready to attend. She sends letters to the principal and entire faculty
letting them know how an implant works, and what kinds of special needs like FM
transmitters and speech therapists the child will need.

26
Lindsay attended the class last spring before starting the first grade at her local
school in the fall of 2007, and Caryn believes it really made a difference. "I think
Lindsay would have been more shy with her classmates and worried about asking for
help," she says. Caryn knew Lindsay was doing well socially when she told her mom
she did not want to be taken to school anymore, and that she wanted to ride the school
bus with her friends. "I watch her waiting out there at the bus stop every morning and
she is so excited," Caryn says. "I don't think she knows how much it means to me to
see her do that."
With more and more children receiving cochlear implants each year, the rift
between the hearing and deaf communities show no sign of slowing down. The
cochlear implant is either a medical miracle or an attempt to eradicate a culture,
depending on who is asked. What is certain on both sides, is that it is an agent of
change, and a stern reminder that there is nothing more essential, and more coveted,
than human communication.

27
BIBLIOGRAPHY
Adler, W. (Personal Interview, December 12, 2007).
Allen, T. (1994). Who are the deaf and hard of hearing students leaving high school
and entering postsecondary education? Paper submitted to Pelavin Research
Institute as part of the project, A Comprehensive Evaluation of Postsecondary
Educational Opportunities for Students who are Deaf or Hard of Hearing,
funded by the U.S. Office of Special Education and Rehabilitative Services.
Retrieved December 12, 2007, from http://gri.gallaudet.edu/AnnualSurvey/
whodeaf.html
Apicella, R., & Fleischer, L. (1993, April/May). Whose child is this? Hearing Health,
40, 18-19.
Bauza, C. (Personal Interview, December 12, 2007).
Behrens, C. (Personal Interview, December 11, 2007).
Behrens, K. (Personal Interview, December 11, 2007).
Behrens, L. (Personal Interview, December 11, 2007).
Bernal, S. (Personal Interview, November 15, 2007).
Bernth, E. (Personal Interview, January 20, 2008).
Burnett, D. (2007, November 22). ISD sees enrollment boom. Jacksonville Journal-
Courier, A5, A7.
Centers for Disease Control and Prevention. (n.d.). Statistics on hearing loss.
Retrieved September 10, 2007 from http://www.nidcd.nih.gov/health/
statistics/hearing.asp
Chorost, M. (Personal Interview, October 27, 2007).
Chorost, M. (2005). Rebuilt: How becoming a machine made me more human.
Boston, MA: Houghton Mifflin Company.
Fleischer, L. (Personal Interview, January 25, 2008).
Hecht, B. (Personal Interview, November 16, 2007).

28
House, J. (Personal Interview, September 30, 2007).
House Ear Institute. (1974). Charles Grazier Cochlear Implant Testing [video
recording]. Los Angeles, CA: House Ear Institute Media Center.
Maylsz, A. (Personal Interview, November 25, 2007).
Nakamura, K. (1995, July 13). About American sign language. Deaf Resource Library.
Retrieved January 15, 2008, from http://www.deaflibrary.org/asl.html
National Institute on Deafness and Other Communication Disorders. (n.d.) More about
cochlear implants. Retrieved September 10, 2007 from
http://www.nidcd.nih.gov/health/hearing/coch_moreon.asp#e
Radomski, M. (Personal Interview, December 12, 2007).
Twohey, M. (2007, September 21). Lending ears to learners. Chicago Tribune, A1,
A22.
White, B. (Personal Interview, December 13, 2007).

Abstract (if available)

Abstract The new generation of young deaf people with cochlear implants, are at the forefront of a cultural battleground between the hearing and deaf communities over language and identity. While it would be a struggle to find an amputee deriding the medical advancements of prosthetic limbs, the deaf community sees the cochlear implant as a threat to their culture and language. This is because children with cochlear implants are taught speech and usually sent to regular schools, making the chances of them learning sign language and being involved in the deaf community much smaller.

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Asset Metadata

Creator Grant, Susan Elizabeth (author)

Core Title The silent debate: the controversy over the cochlear implant and how it is changing the deaf community

School Annenberg School for Communication

Degree Master of Arts

Degree Program Journalism (Print Journalism)

Publication Date 04/16/2008

Defense Date 03/25/2008

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag cochlear implant,Deaf Education,OAI-PMH Harvest,Sign language

Language English

Advisor Cole, K. C. (committee chair), House, John (committee member), Seidenberg, Willa (committee member)

Creator Email susangra@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-m1136

Unique identifier UC1504286

Identifier etd-Grant-20080416 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-57258 (legacy record id),usctheses-m1136 (legacy record id)

Legacy Identifier etd-Grant-20080416.pdf

Dmrecord 57258

Document Type Thesis

Rights Grant, Susan Elizabeth

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Repository Name Libraries, University of Southern California

Repository Location Los Angeles, California

Repository Email cisadmin@lib.usc.edu