Saturday, December 3, 2016

Cochlear Implants and Deaf Identity: Final Draft

Word Count 4195
Cochlear Implants and Deaf Identity
            In a flurry of raw emotion and genuine fear, Jenna looked at her husband as if to glean some explanation.  His face was blank, expressionless, his mind still trying to process the doctor’s words, “Sam is deaf.” In Sean’s mind, the sound of each word started to pulse over and over, losing an element of clarity with each reverberation like a dull echo.  The walls in the small examination room seemed to expand and contract with Jenna’s now labored breathing as she too began to process the diagnosis. Fear, she decided, was not dark and empty; it was bright, confusing and noisy. Overladen with medical terminology, overly-informative brochures, white walls and an obviously polished stethoscope, fear for Jenna and Sean was a piercing brightness. Their eyes met, and in that instant their minds considered the inevitable future for their daughter: there would be no “first word,” no way for her to hear “I love you,” no singing, and no way to hear a proposal or say “I do.” The future for their baby girl was as silent as the room they now sat. Still holding their sleeping precious miracle, baby Samantha Rae, Dr. Yao quietly offered, “There are a few options you may wish to consider….”
The inclination to care, treat and fix the broken is one of the great selfless sacrifices that make humans special, albeit imperfect. To the vast majority, deafness is viewed as a disability that can be fixed by a relatively simple medical device: a cochlear implant. Proponents of the procedure see the device as a unique method to improve quality of life and include the deaf in the activities of the typical world. The reality is much more complex.
This paper aims to question the preconceived elements of scientific progress as they relate to deaf people and their culture. This document will review the ongoing protest by select groups of the deaf community, including the Audism Free America organization, against proponents of cochlear implant technology especially the Alexander Graham Bell Association. Specifically, this paper analyzes the Omni Hotel Protests. In order to understand the complicated ethics and controversial opinions of both sides of the argument, a comprehensive explanation of necessary terminology and historical background of deaf oppression accompanies the rhetorical and object analysis.
There are essentially two common perspectives on deafness: disability or linguistic minority (Bramwell 222).  Feeding into the opinion of disability is the premise that deafness is a condition “that warrants medical and biotechnological intervention,” with the purpose of absolving the problem (Mauldin 156). Such individuals and institutions focus on medical definitions to define and characterize deaf individuals in similar categories as the blind and handicapped. Those whose perspective on deafness is one of a linguistic minority argue that deafness is simply a social structure defined by diversity (Mauldin 155).  Such arguments mark the foundations for both the Speech and Hearing Symposium and Audism Free America. However, an understanding of Deaf identity and culture is essential to grasp the emotional and political significance of the Omni Hotel protests.
Key concepts and terminology are defined in order to familiarize the reader with opinions of the deaf and medical communities.  One of the most significant words in the vocabulary of deaf rights activists is audism. Like racism, the word ‘audism’ caps every oppressive experience and prejudiced event into a familiar concept. Coined by Tom Humphries in the 1970s, audism has exposed the “beliefs and behaviors that assume the superiority of being hearing over being Deaf” (H-Dirksen 240).  Audism has been recognized as being individual, institutional, metaphysical and laissez-faire (Eckert 101). This paper focuses primarily on the institutional audism of the educational system and the laissez-faire audism present in the medical system.  In his explanation, Eckert describes “laissez-faire audism” as the sort of inherent and perpetual stereotyping by hearing individuals (107). For example, audism recognized the practices of ‘oralism’ and ‘mainstreaming’ imposed on young individuals in the deaf school system. Oralism is the term used to describe a method of teaching deaf children through lessons on lip-reading and vocalization without manual language intervention (Cerney 11). Oralism was the result of the Milan Conference that sought to ban sign language and re-establish deaf children as “normal citizens” (Cerney 12). Mainstreaming was the term used to describe the “practice of moving children from their special education classes for part of the day and placing them in general education classes” (Cerney xiii).  Both tactics were used in order to persuade the growth of the deaf individual into one of a hearing person and thereby disturb an important feature of the deaf culture: their language.
However, oppression of deaf individuals is not a novel issue, but rather an extensive institutional and individual prejudice that has taken place for centuries.  The problem with such oppression is that it is constant and not always blatant; it can range from awkward public encounters to overt discrimination disguised as medical treatment. From the Feudal Community in the Middle Ages to Alexander Graham Bell and the rise of cochlear implant technology, oppression has been ever present for the deaf community.
The idea of ‘disability’ in classification of the deaf, blind, crippled, deformed or mentally unstable was introduced during the rise of the Feudal Community in the Middle Ages. One’s worth to society and responsibility to provide for the community were ideas that shaped the rejection and banishment of some deaf individuals especially in areas that saw widespread improvements in literacy.  Other areas, such as the non-literate agricultural communities, saw deaf people flourish.  Success in agricultural communities was based on skill performing highly laborious tasks such as farming, forging and carpentry. Such skills were easily acquired by hardworking deaf individuals (Branson 5). However, the bubonic plague in the fourteenth century put those literate individuals into the street and thus, “the ‘able-bodied’ poor beggars had the advantage, driving the ‘disabled’ further into poverty” (Branson 7). As Capitalism, individualism and the notions of democracy gave rise to individual power and justification for such prejudice, discrimination was born (Branson 10). In the late 19th Century, the most concentrated embodiment of discrimination against the deaf community came from the education system. While some institutions such as Mr. Bartlett’s Family School for Young Deaf-Mute Children provided an atmosphere of encouragement via inclusion of both hearing and deaf pupils, some schools were blatantly offensive; Frederick Knapp’s school in 1877 shamed any student caught signing by making them wear gloves in order to recognize “punishment and stupidity” (quoted by Cerny 11). In Milan, Italy, 1880, the exclusion of the deaf reached a climax: a conference concerned with the education of the deaf was called drawing educators primarily from France, Italy and America. The Milan conference was run primarily by hearing individuals that did not sympathize with the deaf community and pushed for communication without sign language.  The papers published disregarded the idea of deaf culture and “called for a total ban on sign language, believing the use of signs was a barrier to deaf people learning speech and becoming normal citizens” (Cerny 12).
There was no greater advocate of the ideologies put forth by the Milan conference than Alexander Graham Bell. Mainstream history celebrates Bell “for his telephone invention and spawning a revolution in the telecommunications industry” (Greenwald 150). Yet, in a portion of his essay, Brian H. Greenwald also refers to Bell as a “tyrant, guilty of committing ‘linguistic and cultural genocide’ against the Deaf community” (137). Alexander Graham Bell was born into a wealthy family lead by deaf educator and father, Alexander Melville Bell. The Bell family was concerned with assisting deaf children with speech and encouraging lip-reading without the use of sign language (Cerny 11). Motivated by a deaf mother and wife, Alexander Graham Bell argued against the use of sign language in order to apply the ideas put forth by the Milan conference and recent scientific theories with the goal of improving the deaf community. However, the more radical opinions were so strongly based in the newly coined concept of eugenics that many classify Bell as the “most feared enemy of the American Deaf” (quoted by Cerny 12).
Eugenics is the term coined in 1883 by Francis Galton to describe the improvement of English society by selective human breeding particularly involved in procreation of intelligent and successful people (Greenwald 139).  It would accomplish this feat by discouraging mating between two unfit organisms. The connection to Alexander Graham Bell comes from a paper published in the same year that outlined his thoughts concerning the intermarriage with Deaf people that “dovetailed neatly with Galton’s ideas” (Greenwald 139). Bell and Galton had an incomplete understanding of the basic principles of heredity and evolution put forth by Mendel and Darwin respectively.[1] Later, Bell attempted to clarify his position on intermarriage by stating that he does not want to interfere with the liberty of marriage, but that the knowledge about incidence of deaf births would be available for deaf people to do with what they please (Greenwald 140). The notion that the marriage between deaf individuals warrants a higher rate of deaf births is incorrect outside of true congenital deafness; 90 percent of deaf children are born to hearing parents (Wrigley 25). The idea that Bell was “deeply involved in eugenics” remains as a bitter note in the memories of deaf individuals. Instead of scientific basis, eugenic principles were introduced to selectively breed humans to accelerate the appearance of a desired trait and drive the evolutionary loss of any other trait; an idea strikingly similar to radical German Nazism (Branson 29). In Bell’s papers, he cautions the marriage of deaf individuals on the premise of genetic characteristics even though his research could not conclude genetic correlation between deaf parents and deaf offspring (Greenwald 140).  Branson recognizes that Bell’s position was a focus on “increasing the number and proportion of desirables born in successive generations of the population” (quoted in Branson 31), but it is easy to see the sense of prejudice felt by the deaf community. The idea of ‘fixing’ deafness was profound in the early 1900s as scientific progress exploded.
As the Civil Rights Movement began to show signs of progress, the deaf community began to fight the overt institutional oppression through their own protests. In 1977, Tom Humphries coined the term audism defining it as “the notion that one is superior based on one’s ability to hear or behave in the manner of one who hears” (Eckert 105).  Just as the concept of combatting racism was understood and agreed upon by the African American community, the prejudice, bias and oppression of audism was familiar to most deaf individuals. In the 1960s and 1970s, deaf individuals had unequal access to telephone services and lack of access to television services, “an equally important communication medium” (Strauss 3). Even after improvements in telecommunications, deaf individuals were patronized with services and special products that did not meet the standard enjoyed by the greater public.  These included expensive and quirky attempts at closed captioning technology (Strauss 4). In addition, it seemed that deaf students at Gallaudet University, a predominantly deaf institution, were experiencing some representational oppression: as the previous president of the university retired, the board was responsible for picking a new president and initially picked a hearing president among a plethora of eligible deaf candidates. The culmination of frustrations of deaf students and faculty was seen in the “Deaf President Now!” protest of 1988 at Gallaudet University in Washington, D.C. to bring awareness to institutional audism and force the board to pick a capable deaf president (Christiansen viiii).
            Novel legislature, including equality in telecommunications and the Americans with Disabilities Act in 1990, and a strong voice for protesting deaf rights gradually improved the lives of deaf individuals by promoting equal access and representation (Strauss 4). Beneath the social progress, researchers were developing a device capable of restoring hearing via electrical stimulation: the cochlear implant (Waltzman 8).  A cochlear implant is a medical device that is surgically implanted in the skull of a deaf individual in order to stimulate the auditory nerve and produce sound.  Many candidates for surgical intervention are young children because of the “neuroplasticity” that will theoretically allow them to learn how to “hear” with the device (Mauldin 131). The auditory microphone sits on the outside of the ear and transmits electromagnetic frequencies wirelessly to an internal receiver/stimulator that is permanently attached to the outside of the skull but beneath the skin.  The receiver/stimulator sends electric signals to the cochlea via a surgically implanted wire to mimic the sound “heard” by the external microphone (Roland 118).  Although a medical marvel, there is much controversy surrounding implementation in young deaf children; the invention of cochlear implants presented an ethical dilemma that questioned deafness, deaf culture, the significance of sign language and what it means to be disabled.
The importance of sign language to deaf culture is better understood now: in his book, A Place of Their Own, John Van Cleve writes, “the associations, conventions, clubs, and marriages of deaf Americans uniformly reflected the importance of sharing this communication method” (106).  The identity of the deaf is based on their language; other cultural associations such as a singular country of origin, cultural food, or skin color are altogether irrelevant.  Their cultural heritage is sign language. Deaf individuals have even classified the identity of deafness by assigning upper and lowercase versions of the word Deaf/deaf. The goal of the distinction is to differentiate those who simply have audiological impairment versus those that are actively involved in the signing community (Wrigley 14). The overarching culture surrounding deaf identity focuses on altered normality instead of abrupt difference.  In A Lens on Deaf Identities, Irene W. Leigh observes that deaf culture celebrates deafness by opposing the notion that a child has “failed the hearing test.” Instead the “Deaf-World” encourages the notion that a child has “passed the deaf test” (Leigh 14).  Such regard for social inclusion based on acceptance of sign language is paramount to deaf culture.
            One particularly strong and emotionally charged identity within the deaf community is disability.  Although some deaf individuals have criticized medical and institutional agencies for categorizing deafness as a disability, others acknowledge the “disabling component of not hearing” (Leigh 18).  However, the raw emotion behind disability as an identity comes into play when medical professionals insist on fixing deafness.  After conquering oralism in deaf schools and establishing equal access for deaf individuals in the way of communication and social service, the introduction of cochlear implants represents direct opposition against the progress made in favor of deaf culture. Audism is still present and has been making an uprising that has been disguised as medical treatment.  Eckert references an “auditory industrial complex (AIC) in which government agencies, medical professionals and manufacturing corporations aggressively target Deaf children for medical treatment through surgery or amplification” (107).  In reference to the surgical procedure, a member of the Alexander Graham Bell Association said, “Some say there’s no such thing as a deaf child. Not if it’s done right” (quoted by Wrigley 215).  Many deaf individuals do not view themselves as being disabled and so the notion of having children cured of deafness by a surgical procedure is disturbing to the deaf community. It is obvious to see the opposition against a medical procedure designed to encourage speech recognition and vocalization and thereby push aside the use of sign language.
The tension set up by the recent introduction of such medical technology has urged some of the Deaf community to support anti-implant sentiment. The deeply rooted historical issues served as a sort of “inception,” as described by Griffin, until the “crisis” that occurred simultaneously with the Civil Rights Movement.  The result, defined by Griffin as the “consummation,” manifested itself as improvements in telecommunication and legislature for deaf individuals (11). However, lingering behind the “mask of benevolence” that is medical intervention stands a renewed institutional oppression (Lane 5).    
Deaf culture, deaf pride and frustrations against institutional audism are the driving force behind the Audism Free America movement. The Audism Free America mission is “To promote and protect the civil liberties of Deaf people and their linguistic birthrights” (Audism Free America). Therefore, the support of the Alexander Graham Bell Association for the Listening and Spoken Language Symposium (comprised of cochlear implant technologies) was in direct conflict with what the AFA stands for. The goal of cochlear implants, medically speaking, is to facilitate stimulation of the auditory nerve via the cochlea for the purpose of bypassing some physiological dysfunction and enabling “near normal speech production and understanding” (Eisen 1). However, when viewed within the context of deaf identity, it is obvious to see how support of cochlear implants can be seen as harmful to the deaf community. The integration of cochlear implants in young children and infants is an example of “Deaf people {being} physically and pedagogically coerced into adopting hearing norms, whether they wanted to or not” (H-Dirksen 241). The opinions of the AFA movement and the AGBA consider the ethical dilemma faced by parents of young deaf children: being torn by cultural identity and medical authority. 
            The Omni Hotel protest represented both revitalization in the fight for deaf rights as well as a new climax for existing issues.  Progress had been steadily and continually made in equality for all deaf individuals until cochlear implant technology was approved by the FDA in 1992 (Waltzman 9). At this point, implementation was slow, sporadic and still experimental, but the mix of strong deaf identity and medical support by the Alexander Graham Bell Association caused fundamental problems.  In the late 2010s, the frustrations of the deaf community finally gave way via the formation of the Audism Free America.  Their mission, in direct synchronization with many aspects defining deaf identity, is “to promote and protect the civil liberties of Deaf people and their linguistic birthrights” (Jordan).  Lizzie Sorkin, a deaf student at the National Technical Institute for the Deaf (NTID) in New York states, “I am a deaf first before being a woman, before my faith, my sexual preference, my interests. I didn’t see my deafness as a problem. I didn’t need to be fixed” (James). The opposing side, The AG Bell Listening and Spoken Language Symposium attendees, sympathized with medical intervention techniques including controversial CI surgeries. The direct clash in opinions of what should define a d/Deaf person reached an important peak at the Omni Hotel in Los Angeles in 2013.
            The protest against the Symposium in 2013 was established by Ruthie Jordan, an active and important Deaf founder in the Audism Free America organization. This was not the first protest against the same Symposium, but it was one that had garnered a vastly accelerated level of coverage in the deaf community because of police activity.  The day began, as described by Jordan in a video log or “vlog,” with security being called on her as soon as she walked into the hotel lobby before the protest even began.  Jordan was questioned by security on whether or not she had a room at the hotel and continually assured them that she was simply waiting at the open café & restaurant until 3PM check-in before heading up to her room until the 5PM protest.  It turns out that security was summoned by Judy Harrison, the AG Bell Symposium Program director, which only added frustration to the already tense atmosphere of the conference.  However, issues throughout evening would continue regarding the actual protest (Jordan). When they arrived, the protesters were unsurprisingly frustrated by the nature of the conference, but in accordance with traffic laws and general attitude, were entirely peaceful (Ringo). Still, security and police were once again summoned by Harrison and the hotel manager in order to control what they deemed as obtrusive behavior.  When police arrived, they found an entirely amicable and legal protest and were confused about the actions that Harrison and hotel staff took to try to control the protest themselves. The situation was eventually left alone after a brief interpreted conversation between Jordan and the four police officers, but not before the Deaf community noticed the oppression performed by organizers of the Symposium (Jordan).
            The encounter was relayed to social media by “vlogs” from Jordan and fellow protestors and was quickly sensationalized in a flurry of raw emotion.  The Atlantic describes the reason for such emotion stating, “The AGB has a complicated history with members of Deaf culture. AGB’s stated mission is to ‘[help] families, health care providers and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention.’ Their preferred methods for doing so emphasize spoken language and de-emphasize the use of ASL” (Ringo).  The importance of sign language to both deaf culture and Deaf identity have already been significantly outlined in the history and rhetoric that even led up to the protest. The Alexander Graham Bell Association’s relationship with seemingly eugenic principles and with the cochlear implant Symposium only accelerated the anger surrounding the audist treatment of deaf individuals at the protest and in the broader world.  A common opinion held by sympathizers of deaf culture is that audism is not dead.  Still others, including some deaf individuals, have swallowed their pride, view deafness from a medical perspective, and admit to the unique benefits of the upcoming technology. However, the split is not entirely polarizing, with some deaf individuals holding a much more neutral stance on the issue. Lisa Velez, another student at NTID agrees with the former: “I was born deaf, and I believe that I should just leave it the way it is” (James).   However, Christopher Lehfeldt, a dentist from Rochester, somewhat disagrees after receiving the cochlear implant surgery.  Lehfeldt admits that cochlear implants are “just another tool in the arsenal for better hearing that helps with full inclusion in the mainstream,” but admits that “no one person speaks for the deaf” (James).  There is obviously still significant disagreement between medical proponents and deaf supporters about the ethics of cochlear implant intervention.
            The protests by the AFA represent a renewed societal crisis by which the definition of deafness remains ambiguous. The protests brought treatment of deaf individuals into the focus of bioethics and the general public to serve as support for the movement against cochlear implants.  However, general acceptance of improved medical technology by the public has served as the primary obstacle to garnering full support from deaf and hearing communities; the next Symposium will be held in Arlington, Virginia in 2017. The protest, although ethical and initially effective in getting the word out, has begun to lose representation; deaf identity is now far more complicated. As oppression has shifted from overt to covert, deaf individuals continue to get cochlear implants.  Medical intervention among young deaf children with hearing parents is exceptionally convoluted: parents must now resolve the conflict of opportunity for their children to hear apart from the child’s consent due to age and effective treatment (Lang 92).  The choice is difficult and riddled with important questions from both positions: Who should decide when or why a child needs surgical intervention? Should the child have a choice? Stuck between the hearing and deaf world, where will children that get implants find their identity? Although many of these questions have not been answered, the protests at the Symposium served as a catalyst for necessary dialogue between the deaf, the general public, medical professionals, and the Deaf.
Perhaps instead of considering the difference between pathological and cultural viewpoints, the deaf and hearing world should consider the humanity of deafness. NTID director Alan Hurwitz wonderfully summarizes this neutrality stating, “Some of us grow up using sign.  Others elect to have cochlear implants; they are all proud to be deaf” (James). We are all humans that are actively pursuing happiness in our own way; getting a surgery or denying a surgery ought not to interfere with that pursuit.  A humble suggestion for medical professionals is to reconsider the meaning of the Hippocratic Oath which states “do no harm,” when it comes to deafness: could surgical intervention be disrupting a beautiful and unique culture? For the Deaf audience: could surgical intervention outside of oppressive measures be a uniting technology for the hearing and deaf worlds? Arguments of both sides are deeply rooted in the concept of difference.  Therefore, instead differentiating someone on their ability to hear, let us all consider the equality verbal and manual communication.
Works Cited
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[1] Bell and Galton incorrectly interpreted evolutionary principles and instead turned to the idea of Social Darwinism that was exceedingly popular at the turn of the 20th century.  It was based on the idea that societies, like organisms were subject to evolutionary principles. Social Darwinism was the theory that weak cultures were diminished by the power and influence of superior cultures.  The phrase “survival of the fittest was coined during this pivotal scientific misunderstanding (“Social Darwinism”).  Their misinterpretation of Mendel’s work was based on a simple type of inheritance (later called Mendelian inheritance) where the crossing of pea plants with a particular physical appearance, or phenotype, gave rise to an expected offspring phenotype. This was a very simple dominant versus recessive experiment that did not translate well into the complications of hereditary deafness (“Genetics”).

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