[Paleopsych] Science-Spirit: Falling on Deaf Ears

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Wed Apr 13 18:02:16 UTC 2005

Falling on Deaf Ears 

[There are major transhumanist issues here. I'm not so sure there will be 
very many deaf parents who will want to stick deaf genes in the children 
and even fewer that would move across state lines or to another country to 
do so. What are your thoughts about "wrongful life" suits? Is living in a 
community of like-minded people (or just like-eared people) better than 
being stuck in the larger world. What would Jürgen Habermas have to say 
about this? But more generally, what are the social consequences of an 
ever widening proliferation of genetically distinct communities? Will 
genetic engineering take place so rapidly that these communities will not 
have time to form in the first place? Maybe not. I read that there are no 
buildings in Singapore more than 18 years old (20 by now), but most 
Europeans would be willing to go to war if the cathedrals were razed to 
make way for shopping malls.

[I open this up for discussion and will cross-post your replies with your 
name unless you ask me to omit your name or not cross-post at all.]

     To most people, cochlear implants sound like a medical miraclea device
     the size of a candy corn that can correct the inability to hear. But
     many in the Deaf community see the technology as a cultural threat,
     yet another example of the hearing worlds inability to really listen.

     by Jenny Desai

     When Angie Mucci's daughter Allie was born nearly three years ago, she
     knew her little girl was special. What she didn't know--and wouldn't
     discover until a year later, when it was clear Allie wasn't responding
     to even the loudest noises--was that her daughter is deaf. Just a few
     decades ago, children with hearing loss as profound as Allie's had two
     choices if they wanted to learn to communicate: lip-reading or sign
     language. But Allie and her mom were given a third option: surgical
     implantation of a "bionic ear," or cochlear implant, that would help
     Allie hear.

     "I am all for giving my daughter every opportunity she has out of
     life," says Mucci, a twenty-nine-year-old Las Vegas resident who, like
     an estimated ninety percent of parents with deaf children, can hear.
     For Mucci, that meant enrolling her daughter in an implant study in
     San Antonio, Texas, where Allie underwent surgery on her right ear at
     the age of thirteen months. Before the operation, Allie could hear
     only sounds that measured at 110 decibels or louder, a sound volume
     that compares with what you might hear when seated in the front row of
     a rock concert. With her cochlear implant, and no visual cues, Allie
     can now detect sounds that clock in at a mere twenty decibels. Mucci
     is currently scheduling a second surgery, this time on Allie's left
     ear, with the doctors who performed the first operation.

     In a predominantly hearing culture in which the notion of correcting
     vision with eyeglasses or even LASIK surgery is met with nary a blink,
     and Miracle-Ear hearing aids for hardof- hearing adults are advertised
     on national television, Allie's surgery might seem like a no-brainer.
     But by opting for surgery, Allie and her mother found themselves in
     the middle of a controversy that has divided virtually everyone it
     touches into separate camps: hearing and deaf, pro-implant and
     anti-implant, medical and "civilian." At stake are the complicated
     questions surrounding what it means to be deaf--not the least of which
     is whether surgical intervention is a method of correcting a medical
     condition or whether it's a process that exacerbates an imbalance
     between a hearing majority and a capital-D Deaf minority, a subculture
     that fights for the preservation of deafness and the right to define
     itself on its own terms.

     For many hearing parents like Angie Mucci, cochlear implants are a
     technological aid, a tool to correct the body's inability to hear--and
     often an obvious option. But what happens when a deaf parent is faced
     with the choice? Consider the case of Michigan resident Lee Larsen,
     the deaf mother of two deaf sons whose custody dispute became an
     internationally publicized Deaf rights case in 2002. Larsen landed in
     court after school officials claimed she was neglecting her children,
     and a year later, court-appointed advocate Joseph Tevlin petitioned
     the Michigan court system to order implants for her two sons, asking,
     "Is it neglect not to have a cochlear implant when the bulk of the
     research shows everyone benefits?"

     To Tevlin, the question was rhetorical. To the Deaf community, it was
     heresy--and yet another example of how the hearing world fails to
     understand what it means to be deaf. Part of the outcry concerned the
     parental right to refuse elective surgery for a child. At an initial
     custody hearing at Kent County Circuit Court in Grand Rapids, amid
     throngs of Deaf advocates and interpreters furiously signing along
     with the oral arguments, Larsen told Assistant Prosecutor Kevin
     Bramble, "I should decide. They are my flesh and blood. I am deaf. God
     made them deaf. I do not want them to have implants."

     Beyond that basic issue--something of a nonstarter legally, since
     Michigan law affords parents the right to refuse elective surgery for
     their children unless they have permanently lost custody rights--lay
     the thornier, uncharted issue of what deafness means when it can be
     circumvented by technology. Lois L. Van Broekhoven, an
     interpreter-referral specialist, told Theresa D. Mcclellan of The
     Grand Rapids Press at the time, "The cochlear implant is, to a large
     degree, a denial of deafness." Claudia Lee of Deaf Community Advocacy
     Network expanded on the sentiment in a release posted on the Web site
     of iCan!, an online community for people with disabilities: "Tevlin is
     suggesting that without implants, the kids won't be able to work up to
     their maximum potential, which is an insult to the Deaf community. It
     perpetuates the biases of society, suggesting you're not as good as
     us, if you're not like us."

     The presiding judge, Kathleen Feeney, received more than 300 e-mails
     and amicus curiae briefs from several Deaf-rights and
     disability-rights advocacy groups. In the words of Deaf activist
     Jeannette Johnson, who organized a protest rally near the courthouse
     and set up a Yahoo! newsgroup that remains active, the controversy was
     both personal and political: "Contrary to what the medical and
     educational establishments desire for the judicial system and society
     as [a] whole to believe, being deaf is not a tragedy. What truly is a
     tragedy is the continuation of judgment and oppression of a minority
     group in a culture that claims to cherish multiculturalism."

     About the size of a quarter, the cochlear implant seems an unlikely
     lightning rod for so much controversy. But, like many technologies
     that make us question who we are and what "normal" physical function
     is, whether you see it as a bridge between worlds or a barrier
     separating them depends on where you are with respect to the
     mainstream. Being born deaf may not be a choice, but many Deaf
     advocates say it's not a disability either--and it's certainly not a
     deficit that the state, or even a well-meaning parent, should step in
     to repair.

     Located in the inner ear, the cochlea is a spiraling, fluid-filled
     tunnel that, except for the tiny hairs that line it, looks much like
     its Latin namesake: a snail. Signals travel through the fluid and hair
     cells to the auditory nerve and then to the brain, where they are
     interpreted as information. Tiny as the hairs are, their role is
     crucial: If they are damaged or absent, impulses cannot reach the
     nerves, a condition called "sensorineural hearing loss."

     Cochlear implants are clusters of electrodes that fill in for the
     damaged or missing hair cells by stimulating the nerve fibers within
     the ear. The history of the cochlear implant dates back to the late
     eighteenth century, when the Italian physicist Alessandro Volta
     experimented with applying electric current to his own ears.
     Describing the experience as a massive blow to the head followed by
     the sound of boiling liquid, Volta discontinued the experiment. But by
     1957, the first successful implantation of an electrode on the
     auditory nerve was reported in France; in 1965, Dr. Blair Simmons
     submitted a paper to the American Otological Society, describing the
     first multiple electrode implant in a human.

     In 1990, the U.S. Food and Drug Administration approved cochlear
     implants for children over the age of two. (They are now approved for
     children aged twelve months and older.) Ever since, doctors,
     educators, and members of both the hearing and the deaf communities
     have been debating the implications of that decision. A position paper
     of the National Association of the Deaf's Cochlear Implant Task Force
     called the FDA approval "unsound scientifically, procedurally, and
     ethically" as early as 1991. Reporting on that decision in 1992,
     psychologist and linguist Harlan Lane declared, "Medical intervention
     is inappropriate, even if a perfect `bionic ear' were available,
     because invasive surgery on healthy children is morally wrong.

     "The interests of the deaf child and his parents may be best served by
     accepting that he is a deaf person, with an elaborate cultural and
     linguistic heritage that can enrich his parents' lives as it will his
     own. We should heed the advice of the deaf teenager who, when
     reprimanded by her mother for not wearing the processor of her
     cochlear prosthesis, hurled back bitterly: `I'm deaf. Let me be

     Since the FDA's approval of implants in the very young, this kind of
     opposition has become manifest in a variety of arguments. There are
     the medical concerns--for one, that the quality and quantity of
     benefits received by undergoing surgery do not outweigh the risks
     involved, including possible exposure to meningitis due to inner ear
     fluid leaks or other complications that can result in further
     surgeries. In addition, there is a wide variation in individual
     experience of augmented hearing among people who undergo surgery, even
     those who receive the same device. And because the surgery destroys
     any residual hearing the subject may possess, the very act of
     augmenting existing hearing can, ironically, leave the patient more
     profoundly deaf if the surgery fails or the implant otherwise has to
     be removed.

     There are also economic concerns. While cochlear implant surgery is
     commonly performed on an outpatient basis in the United States, the
     device, surgery, and follow-up care currently cost about $40,000--a
     prohibitive price tag for some eligible patients given that not
     everyone carries insurance and not all insurance carriers will pick up
     the tab. Some patients can afford to pay out of pocket when insurance
     refuses to cover the cost, but many others cannot. Should something as
     basic as the ability to hear be determined purely by economics?

     The most vehement opposition to cochlear implants, however, has been
     on humanitarian and cultural grounds. Opponents argue that because
     very young children cannot choose implants for themselves, they are,
     in effect, being ushered into a hearing world by the choice of their
     parents--parents who are overwhelmingly hearing people. These
     children, the argument goes, are left straddling the deaf and hearing
     worlds, convinced that there is something wrong with them because they
     were born unable to hear.

     "It is common for parents to be introduced to a number of audiologists
     and speech therapists when their child is first diagnosed with a
     hearing loss but to never be taken to meet a deaf adult so that they
     may receive the other perspective," write Shelli DeLost and Sarah
     Lashley, researchers at MacMurray College in Jacksonville, Illinois.
     "To the parents, [the cochlear implant] is seen as the instrument of
     success. They may not understand that it is possible for a deaf child
     to function and thrive in a hearing world without the ability to hear
     or speak."

     Lane, a professor at Northeastern University in Boston, Massachusetts
     and the author of The Mask of Benevolence: Disabling the Deaf
     Community, concedes that cochlear implants can help adults who have
     become deaf after learning to speak. But for children who are born
     deaf, Lane objects to the medicalization of what he considers to be a
     cultural attribute. By creating an implant to counteract deafness, he
     believes scientists, audiologists, and technicians have missed the
     point: Deafness is not a disability to be repaired, but a cultural
     attribute all deaf persons hold in common, and around which the Deaf
     have built a community. Cochlear implants, then, are a "massive
     intervention in the life of a child in an attempt to impose the
     majority's language, culture, and values."

     Once asked whether he would have his own hearing restored if he could,
     I. King Jordan, the first deaf president of Gallaudet University, told
     interviewers, "That's almost like asking a black person if he would
     rather be white ... I don't think of myself as missing something or as
     incomplete ... It's a common fallacy if you don't know deaf people or
     deaf issues. You think it's a limitation."

     Gallaudet University in Washington, D.C., is named for Thomas
     Gallaudet, who became interested in deaf education in the early 1800s
     and journeyed to France to learn Laurent Clerc's method of teaching
     sign language to deaf children. Back in America, Gallaudet and Clerc
     helped found the first permanent school for deaf children in the
     United States, the Connecticut Asylum for the Education and
     Instruction of Deaf and Dumb Persons, which would eventually become
     the American School for the Deaf.

     In some ways, the current schism in approaches to deafness and deaf
     education reflects an older, historical quarrel between Gallaudet and
     those like Alexander Graham Bell who campaigned against signing, deaf
     teachers, even marriage between deaf persons. The deaf, they felt,
     should learn to lip-read and vocalize. Today, the Alexander Graham
     Bell Association for the Deaf and Hard of Hearing continues to promote
     the use of spoken language and technology, including implants, while
     many students and faculty members at Gallaudet, the world's only
     university with all programs and services designed specifically for
     students who are deaf and hard of hearing, have historically been
     skeptical at best about the practice of implantation.

     For those of us who can hear--including parents who consent to
     cochlear implants because their children cannot--it's difficult to see
     being deaf as anything but a disability. But for the Deaf community,
     whose cultural glue is a shared minority history and whose common
     argot is sign language, deafness is an endangered cultural attribute.
     And cochlear implants are what's threatening it.

     In the opinion of Beverly Biderman, an adaptive technology consultant
     at the University of Toronto who was fitted with a cochlear implant
     after thirty years of profound deafness, "To understand this often
     emotional, vehement opposition to cochlear implants, one needs to
     understand the long history of discrimination against deaf persons.

     "In Europe, until the middle of the eighteenth century, deaf mutes
     were not even recognized as persons by the law. They were unable to
     marry or inherit property or receive an education ... In North
     America, even in recent years, there have been cases where deaf
     persons have been improperly diagnosed as retarded or mentally ill,
     and placed in institutions. It is no wonder, then, that following the
     example of Black pride and Gay pride, there is now a Deaf pride
     movement, for which opposition to cochlear implants has become a
     rallying point."

     Underlying the objection to cochlear implants on cultural grounds is
     the assumption that "curing" deafness devalues sign language, or
     threatens its primacy among the minority population that uses it.
     Hence the claim by many Deaf advocates that cochlear implants are
     tantamount to cultural genocide. Under the Third Reich, Yiddish was
     almost eradicated; in Ireland, speaking Gaelic was prohibited; in
     Native American and Aboriginal boarding schools established by Anglo
     settlers, the mother tongue was forbidden, literally unspeakable.
     Language, like certain foods, religious practices, and customs, is a
     tie that holds community identity--and among minority populations that
     often feel disenfranchised, it's understandably binding. The use of
     cochlear implants, then, looks a lot like another tool to promote
     vocal speech over the "natural language" of the deaf.

     To some extent, history--and a growing trend toward mainstreaming deaf
     children into classes with hearing children, or relying on aural-oral
     approaches at the expense of American Sign Language--has borne out
     those concerns. Before the legal battle over her two sons began,
     Larsen used ASL as the primary mode of communication with her boys,
     Kyron, then about three years old, and Christian, who was nearly two.
     But as she was trying to regain custody of her children, they were
     transferred to a new school, Shawnee Park Elementary, which offered an
     aural-oral program that ignored ASL. Administrators at the school
     claimed the boys were falling behind their peers, most of whom already
     had cochlear implants or were scheduled to get them.

     When Joseph Tevlin, the court appointed advocate, petitioned the court
     to order implant surgery for the boys despite Larsen's long-standing
     objections, he claimed that the benefits the children would receive
     from the implants overrode Larsen's parental rights, and, indeed, that
     denying the boys that benefit constituted another kind of neglect. The
     boys, Tevlin argued, "are losing; they are not gaining language." The
     Michigan Deaf Association countered that speech is not the only form
     of language--and the dozens of Deaf interpreters, advocates, and
     supporters "whispering" in ASL furiously enough to elicit a stern
     reprimand from Judge Feeney didn't exactly help Tevlin's case.

     "Education is essential, but I believe ASL would be the tool to use,"
     says JennyLynn Dietrich, a thirty-year-old student at Gallaudet who
     describes herself as hard of hearing. "Any other resources such as
     fingerspelling, speech, hearing aids, or whatever would be fine, but
     ASL should be primary. Cochlear implants would only take my child's
     sense of self. I want my children to be what they want to be by
     choice, not by what I choose."

     Yet there are signs that opposition to cochlear implants may be waning
     among some members of the Deaf community. In the May 2004 issue of The
     Archives of Otolaryngology--Head & Neck Surgery, researchers John B.
     Christiansen and Irene W. Leigh, both of Gallaudet, suggest that
     perceptions of cochlear implants are changing, partially due to new
     research. "Clearly, many people in the deaf community, including
     faculty, staff, students, and alumni at Gallaudet University, are much
     more openminded about cochlear implants today than they were five or
     ten years ago, although some still question pediatric implants," the
     authors write. Their studies also suggest that parents increasingly
     look to implants as tools for integrating their children into hearing
     environments, with one proviso: "To ensure optimal use of the cochlear
     implant, parents need to remain involved in their child's social and
     educational development," they caution.

     The researchers combined data from two studies. The first, by the
     Gallaudet University Research Institute, was conducted in the spring
     of 1999 and included the results of 439 questionnaires filled out by
     parents of children with cochlear implants. The second study, which
     consisted of more than fifty interviews with parents of sixty-two
     children with implants (and one without), represented a range of
     children who were between fifteen months and seventeen years old when
     they received implants, and between the ages of two and twenty at the
     time of the study. According to the Gallaudet study, sixty percent of
     parents said they would have liked their child to receive an implant
     earlier because they believe it would have better facilitated the
     development of spoken language. A year after their children's
     surgeries, fifty-four percent of these parents reported that they were
     very satisfied with their child's progress.

     Given that the technology of cochlear implants is significantly older
     than reliable studies on their repercussions, it would appear, on
     balance, that detecting sounds with the aid of implants is an
     improvement over being unable to detect them at all--at least if
     you're looking at things from the hearing side of the debate. It is
     estimated that there are more than 50,000 people in the world who now
     hear with the aid of a cochlear implant--significantly more people
     than have been studied, but only a fraction of those who are likely to
     undergo implantation in the near future. According to Stephen Joseph
     Hardy II, past president of the Florida Association of the Deaf, there
     are more than 28 million people with significant hearing loss in the
     United States alone, and about 70 million worldwide. How likely is it,
     then, that cochlear implants can "cure" deafness, and when can we
     expect cochlear implants to render sign language obsolete?

     For now, the answers to those questions, respectively, seem to be not
     likely and never. If we believe psychologist Steven Pinker, author of
     The Language Instinct, it seems human beings are preprogrammed for
     learning language, and virtually all of the most important absorption
     of language occurs in the first four years of life. Early studies
     tracking the impact of cochlear implants on young deaf children
     suggest early intervention for children with profound hearing loss
     definitely helps the acquisition of spoken language. But as they are
     currently introduced in young deaf children's lives and supported by
     therapy, cochlear implants are by no means a cure-all.

     Even the most ardent advocates of cochlear implants seem to view them
     as an aid, not an end in themselves. Richard Dowell, who helped
     develop the Nucleus Multichannel Cochlear Implant at Australia's
     Bionic Ear Institute, writes, "The lack of hearing in early life can
     have a serious effect on the development of language. However, spoken
     language is not the only way to communicate. For over 200 years, Deaf
     (capital D) people have maintained their own unique culture using
     visual language based around hand gestures ... Despite the success of
     cochlear implants so far, the hearing provided is a long way from
     normal hearing, and we need to continue the research and development
     in a number of areas to narrow this gap. The use of sign language
     needs to be seen as compatible with the use of cochlear implants and
     hearing aids, and not an either/or choice."

     So where does that leave Allie, Kyron, and Christian?

     According to her mom, Allie's implants have given her more tools to
     explore the world. "She hears airplanes fly over our house when we are
     inside. She hears the fridge kick on in a low hum. Her speech is
     beautiful. Frankly, she doesn't sound like a deaf child."

     But whether or not she chooses to embrace a place in the Deaf
     community, Allie is deaf. "I do recognize she is deaf," her mom
     agrees. "She will always be deaf. Which is why I wanted her to learn
     ASL. But she answers me orally. That is her choice, and it is all
     about choices. I am not here to say what is best; I could never
     presume that. I do know what has worked for my daughter."

     Mucci pauses, then reconsiders. "Tonight I started signing with her
     again in the bath. Her eyes lit up. She remembered it. She didn't sign
     much back to me, but understood what I was telling her completely. I
     am going to make an effort to sign to her more. I am not sure what
     this means for her therapy, but right now, hearing her speak is a
     beautiful thing."

     For children like Kyron and Christian, kids who are born deaf to a
     deaf parent, the future might look a little different. As a deaf
     parent, their mother already knew she could function in a hearing
     world--and could communicate that confidence to her children. "I want
     them to grow up with a strong selfesteem, not trying to be something
     they're not. I want them part of the Deaf culture," she testified.
     "Look at me. I am deaf. I am in the hearing world and the deaf world
     ... I'm deaf and I get along."

     When the courtroom finally cleared, and the Grand Rapids case that
     drew such impassioned responses from both sides of the cochlear
     implant controversy was settled, Larsen had proven her point. Even
     while questions about the benefits of cochlear implants and how
     society judges deaf people who want to be deaf remained unsettled,
     she'd fought for her parental right to choose for her children. She
     eventually regained custody of her kids. And she knew that when the
     time came for Kyron and Christian to make their own choices, a
     technology that could help them hear would be available, even if their
     grasp of spoken language might be hindered somewhat by the delay.

     Meanwhile, they are learning, with the support of their mother and the
     Deaf community, to speak using ASL and to navigate the world in their
     own way. Asked if she would feel differently about her children if
     they underwent court-ordered surgery and training to speak in words
     she would be unable to hear, Larsen told the court, "I would never
     shun them. They are mine. I teach them."

     At three, Allie Mucci can now speak for herself, but she can't yet
     speak to the significance of the implant in her right ear. Neither can
     the researchers who are tracking her progress. But as those
     researchers learn new ways of understanding language and the brain,
     more kids like Allie, Kyron, and Christian will be in a position to
     test what being deaf really means.

     [3]Tuning In: The Science of Cochlear Implants

     Site and magazine supported by a generous grant from the [11]John
     Templeton Foundation.


     3. http://www.science-spirit.org/tuning.html

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