The Brain and Beyond...

Pediatric Cochlear Implants: The Great Debate

Author: Aviva Weinberg, University Of Pennsylvania Faculty Sponsor: Paulr R. Wolpe, Ph.D.
Abstract: The rise and refinement of the cochlear implant, a device meant to correct for sensorineural hearing loss in prelingually deaf children, has faced much debate and criticism. The controversy over this corrective technology has revealed a significant social divide between the hearing and the non-hearing parents of these deaf children. While the hearing parents welcome the implant as an exciting new medical remedy for their childrens deafness, the nonhearing parents reject the implant as a tool of discrimination. The source of this divide seems to lie in two very different operative paradigms for deafness: the pathological and the sociocultural. The hearing parents pathological view places deafness as an auditory deficit meant to be repaired, while the non-hearing parents view deafness as a sociocultural identity. Understanding these divergent social perspectives sheds light on the heavy controversy surrounding the cochlear implant and its hopes for future use.

Over the past several years, cochlear implant technology and its attendant train of ethical quandaries have made headline news. The debate over the determination to use cochlear implants in prelingually deaf children brings to light a host of legal and ethical issues, including informed consent and parental decision making, questions of the cost-effectiveness of surgery and therapy, risk assessment, and the ethical dilemma of refusal of treatment. The sociological dimension of this bioethical debate highlights two per vasive trends: a distinct misunderstanding of Deaf Culture, and a more general socio-cultural blindness to those who are different. This socio-cultural blindness is not unique to the issue of cochlear implants. In the case of physician-assisted suicide and the disability communitys protests, it was the existence of a cultural ignorance on the part of the socalled normal community which made it nearly impossible for the disability communitys wishes to be understood and respected. American society tends to operate on these cultural assumptions and social biases,
Aviva Weinberg is a Senior at the University of Pennsylvania and is a Fine Arts major. Email: avivaw@sas.upenn.edu Paul Root Wolpe, Ph.D. is the faculty sponsor for this submission. He is the Senior Fellow at the Center of Bioethics and an Assistant Professor of Psychology at the University of Pennsylvania. Address: 3401 Market St, Suite 320; Philadelphia, PA 19104 Email: wolpep@mail.med.upenn.edu
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thus perpetuating a selfish social doctrine which suggests youre not as good as us if youre not like us (Correll, 2002). The cochlear implants controversy originated in the 1980s with the first pediatric cochlear implant surgery at the House Ear Institute in Los Angeles (Delost and Lashley, 2000). What evolved from this technological leap was a huge rift between the hearing and the non-hearing parents of deaf children. The proponents of cochlear implants support the use of this technology which can medically repair deafness in children with prelingual sensorineural hearing loss. These hearing parents are supported by medical professionals, the National Institute of Health (NIH), the Cochlear Implant Association, Inc., the American Medical Association (AMA), the American Academy of Otolaryngology-Head and Neck Surgery and the vast majority of hearing society. On the other side of this rift is the Deaf Community, whose members recognize deafness not as a disability but rather as a cultural identity. This Community includes non-hearing parents of deaf children, many deaf educators and organizations such as the National Association of the Deaf (NAD). Cochlear Implant Technology In the case of a sensorineural hearing loss, the tiny hair cells which typically conduct auditory signals in our cochlea have either been damaged or are absent from the inner ear. As a result, the electrical impulses which usually travel from these hair cells to auditory nerve fibers for interpretation are inefficacious; the nerve fibers are not enervated and there is no hearing response. The cochlear implant is an electrical device which proposes to remedy this incapacity by functioning in place of the damaged hair cells and providing the necessary electrical stimulation. The implant mimics patterns of nerve activity present in the normal human ear and allows for the spontaneous recognition of all types of sound and eventual acquisition of speech (Eddington, 1994). While there are many adults with the implant, the most profound improvements in hearing and speech have been observed in children. The younger the child is when the implant surgery takes place, the better the outcome. As a result, this debate has profound consequences for those deaf people who cannot make the decision for themselvesthe children. Deafness: Pathological vs. Sociocultural Perspectives The core of the bioethical debate is rooted in the battle to define disability and understand deafness. In his

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book Seeing Voices, Oliver Sacks remarks that although society tends to think of deafness as a nuisance, disadvantage and handicap, the deaf community has joined together and views itself in an ethnic light as a people with a distinctive language, sensibility and culture of their own (Sacks, 1990; xii). This difference between deafness as handicap and deafness as culture is encompassed within two pervasive views of Deafness. The pathological view sees deafness as an auditory deficiency, a handicap, a medical problem to be remedied so that a deaf person becomes as much like a hearing person as possible (Skutnab-Kangas, 2000). Those who support this view have a largely medical understanding of deafness and thus desire a medical intervention. The NIH, AMA and various medical professionals urge the use of cochlear technology to normalize deaf children by mainstreaming them into the hearing world. The efficiency of the procedure and its promises of positive results excite those parents who so strongly desire the entrance of their disabled children into dominant culture. The opponents of the cochlear implant possess a very different view of deafness. For them, it is Deafness with a capital D, for the ethnic community it denotes. Their sociocultural view sees the Deaf as a sociocultural minority, (different, but not deficient) which shares a series of characteristics with other minorities and where the problems the Deaf face can be seen as human rights problems (Skutnab-Kangas, 2000). In their view, Deafness is not a disability to be fixed medically, but rather it is a cultural identity which should be accepted and supported in our culturally diverse society. The suggestion that a Deaf individual is inferior or somehow deficient is seen as a grave insult within the Deaf Community (Sound and Fury, 2001). Supported by the NAD, the Deaf Community rejects this biased definition of what is normal and are extremely hostile to the practice of viewing the deaf child as broken, abnormal and fixable. They fear the cochlear implant as an isolating means which will eradicate the use of American Sign Language , hold back communication development, and ultimately threaten the rich and supportive Deaf cultural tradition. Many opponents of the implant fear that their children will be forced to straddle the divide between two worlds. Many deaf people and some hearing parents of deaf children speak of two worlds, one hearing and one silent, and of deafness as a birthright, part of an identity, almost something celebrated rather than a disability to be fixed (Markon, 1998). According to this view, deafness is a subculture in which they are proud to incorporate their children. They do not see their silent world as cold and isolating but rather view it as an enjoyable alternative to hearing (Sound and Fury, 2001). Consequently, the cochlear implant is an affront to their cultural identification and not a welcome amelioration.
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The debate is thus one that hinges greatly on the social construction of deafness in America and the great divorce between the world of the hearing and the nonhearing. The Formation of a Culture At the heart of the debate lies a pervasive ignorance and insensitivity to Deaf Culture. But how did this culture form and why does this social rift exist? There were several reasons for the cultural germination of Deaf Culture. Historically, the deaf existed as a group of isolated and marginalized individuals, spurned by society and considered intellectually inferior due to their lack of communication abilities. As a result of this social rejection and oppression they formed a sense of community, shared circumstance and a special bond of kinship in their collective silent world. With the introduction of sign language, a group of individuals with a language quite distinct from the language of governing society galvanized into a community. In 1880 the Deaf Community organized the National Association of the Deaf, the first disability association to organize for the purpose of safeguarding the accessibility and civil rights of the deaf and hard of hearing (NAD, 2003). Sign language, by conferring the power of an owned form of communication, was responsible for the creation of this insular but proud community and its burgeoning culture (Sacks, 1990). To those who are deaf or hard of hearing this community provided a substitute for the cold and unwelcoming hearing community. To spend a childhood in isolation and then find a community of individuals who shared the same frustrations, limitations and experiences was an incredible change. It is no surprise that a pathological view of deafness has been perceived as a threat to Deaf Culture. Such a medicalized view strikes at the very heart of deaf cultural identity; it reduces its subculture to pathology and thus undermines the pride and self-esteem the Deaf have gained within the context of the Deaf Community. The Deaf community rebuffs a medical prescription for normalcy and frames the debate within their sociocultural view of deafness. A cultural analogy has been made in this respect: If you were a black person, would you want to be white? Why would I want to hear? Ive been deaf all of my life. Im not ill. Im just a person who cant hear (Markon, 1998: 2). Accordingly, the notion of deafness as a deficiency is a form of ethnocentrism, treating deafness as a medical handicap is discrimination and the idea of a cochlear implant is exceptionally offensive. Framing the Debate Most proponents of the technology are the hearing parents of deaf children. These parents cite numerous

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reasons for their decision to use cochlear implants. The importance they place on an oral/aural approach to educating their children is based on a genuine desire to be able to communicate with their children. They choose the English language rather than sign language because it is their native cultural language. They are not members of the Deaf Community and therefore have no lingual ties to sign language nor do they have many direct or meaningful social bonds to Deaf Culture (James Parton, 1997). These parents cite low test-scores for ASL users as one reason to employ the implant. They champion the efficacy of the device, which has been proven to have a notable success rate especially as the technology is refined and improved. Proponents further emphasize that the implant provides a wealth of valuable social opportunities as hearing and speech are the means of full access to society at large. They place great import on the ability of the cochlear implant to provide for future life options in an already demanding and competitive world. Quite significantly, these parents make a point of emphasizing that the decision is not one motivated by a selfish desire to normalize and make children just like us, but rather is an issue of providing as much freedom and life choices as possible for their children, something every parent wishes to do. To them, deafness threatens something of supreme importance in American society: Freedom (James Parton, 1997). In their view, their children are not being deprived of a cultural identity, and as these parents find support in a host of organization like the Alexander Graham Bell Association, the Cochlear Implant Clinical International, and the AMA , they have in a sense created their own community, a Cochlear Community. The opponents, many of whom belong to the Deaf Community, counter many of their proponents justifications. They outright reject the socially-biased definition of normalcy. They deny the data on its efficacy and continue to ask whether or not the quality and quantity of the benefits outweigh the risks involved (Delost and Lashley, 2000). Many are concerned with the various precautions associated with the surgery. Others cite the temporary speech delays as a reason to avoid the surgery. (Hollins, 2000) Perhaps their most pressing fear is that their children will become detached from the Deaf world while still waiting for entrance into the hearing world; instead they will exist in a form of limbo between the two. These parents fear this liminal position (Hollins, 2000: 189), believing it will create a class of children who are even further disadvantaged and marginalized within society. Another significant fear expressed by deaf parents is that their children will reject them; they worry that their children will no longer want to communicate with them in ASL. They are also incredibly apprehensive of their child becoming ashamed of their deafness, their identity. They
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exclaim that sign is their language, deafness is a beautiful, natural state, and their children should be happy and proud to belong to Deaf culture (Sound and Fury, 2001). Most of the anti-cochlear camp also decries the method in which hearing parents of deaf children are introduced to the diagnosis of hearing loss. These parents are swarmed with audiologists, speech therapists, and pediatricians all of whom tell them about the medical prognosis/diagnosis and disadvantages of this handicap. They are not introduced to deaf people nor are they introduced to the concept of deafness as cultural identity. Ultimately these parents only see deafness as a disability and not a natural state. They falsely see cochlear implants as instruments of success in removing this disability (Delost and Lashley, 2000). The Deaf community argues that hearing society is wholly incapable of understanding their side of the story they dont recognize the ability of their children to thrive quite happily in the hearing world without the ability to hear and speak. According to them, the cochlear implant is not only unnecessary, but the idea of the implant is oppressive (Delost and Lashley, 2000). It confers a social bias to eradicate deafness and is interpreted as a death threat to Deaf Culture and Community. Common Ground Although there seems to be a cultural gap between these two camps, some common ground does exist. Both proponents and opponents of the cochlear implant declare that one must separate societys ideals from the childs individual needs. The difference lies in what each side considers a respect for their childs needs. The proponents say they have no reason to answer to the Deaf Community; they owe them nothing and owe their children everything, and must make a choice which will ensure the best possible future for their children. The opponents say that these parents must forget what they think society demands of their children in terms of normalization and integration into society, but instead must foster their childs natural abilities and develop pride and place in the Deaf Community. However, this opposing argument does not appear to recognize the childrens individual needs at all, and instead comes across as a selfish motivation. It claims to be looking out for the childs good but is far more focused on the collective good of the Deaf Community to which these parents belong, a community they fear will be eradicated with the use of the cochlear implant. The failure of these two camps to see eye-to-eye on the issue of cochlear implantation results from a distinct socio-cultural divide. The hearing and non-hearing parents possess two entirely incompatible views of deafness which prevent them from understanding eachothers perspective. Furthermore, the Deaf Community resents the cochlear

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implant as a symbol of a paternalistic control over their society, a phenomenon which has been called audism (Hollins, 2000: 183). For the Deaf Community the cochlear implant is simply another way for the hearing world to dominate, restructure, and exercise authority over the deaf community, (Hollins, 2000: 183) and perhaps even eventually uproot their culture. It would seem that as long as they regard deafness as a minority culture and the implant as the hearing majoritys tool of discrimination, there is little hope for agreement between the two camps of thought. Ultimately, a widespread acceptance of the cochlear implant must wait for a concrete resolution of the discord between the pathological and sociocultural categorizations of deafness. Without this social unification, the cultural gap between the hearing and the deaf will remain an obstacle to treatment.
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Retrieved 14 March, 2003. <http:/clerccenter.gallaudet.edu/ CIEC/conference-proceedings.html#presentationA.> 4. Eddington, Donald K. Ph.D. Cochlear Implants: Restoring Hearing to the Deaf, The Harvard Mahoney Neuroscience Institute Letter, Volume 3:4, (Fall, 1994). Retrieved 19 Mar. 2003,<http://www.med.harvard.edu/publications/ On_The_Brain/Volume3/Number4/Cochlear.html> 5. Hogan, Anthony, The Business of Hearing, Health, 2,4 (October 1998) 485-501. 6. Hollins, Kathryn, Between Two Worlds: the social implications of cochlear implantation for children born deaf, Madness, Disability, and Social Exclusion: The archeology and anthropology of difference, ed. Jane Hubert, (London: Routledge, 2000) 180-195. 7. James Parton, Melody. A Parent Perspective of Cochlear Implants, 1997 FDA Hearing Speech, retrieved 12 March, 2003, <http://www.allhear.com/patients/MelodyParton.html> 8. Jones, Megan A., Deafness as Culture: A Psychosocial Perspective, Disabilities Studies Quarterly, Spring 2002, Volume 22, No. 2 retrieved 12 March 2003. <www.cds.hawaii.edu>. 9. Levy, Neil, Reconsidering cochlear implants: the lessons of Marthas Vineyard, Bioethics, 16:2 (April, 2002) 134-153. 10. Markon, Jerry. A Gain or a Loss? Deaf Community Split over Implants that Help Some Hear, Newsday Nov. 1998, pp A05. 11. National Association of the Deaf (NAD), Position Statement on Cochlear Implants. NAD Cochlear Implant Committee, Approved by the NAD Board of Directors, October 6, 2000. Retrieved 20 March, 2003. <http://www.nad.org/infocenter/newsroom/ positions/CochlearImplants.html> 12. Sacks, Oliver. Seeing Voices. (New York: Vintage Books, 1990). 13. Shapiro, Joseph P. The Deaf Celebration of Separate Culture, No Pity. People with Disabilities Forging a New Civil Rights Movement. (New York: Random House, 1993) Chapter 3. 14. Skutnab-Kangas, Tove. Linguistic genocide in educationor worldwide diversity and human rights? (New Jersey & London: Lawrence Erlbaum Associates, 2000) Chapter 4. 15. Sound and Fury, prod. Roger Weisberg, dir. Josh Aronson, 2001.

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