The Medicalization of Deafness

Deaf Culture

The American Sign Language (ASL) alphabet is shown here.

Deaf Culture refers to a cultural group of primarily deaf individuals who share similar beliefs, values, practices, identity, and history that reflect the reality of living as a deaf individual in a hearing world. The primary means of communication is American Sign Language (ASL); Deaf people are a part of a “culturo-linguistic” community. Paul Rabinow's thesis on biosociality investigates the ways in which communities are formed “through shared biological characteristics” . The Deaf community can be seen as an example of Rabinow's biosociality as it is predicated upon a shared biological classification of deafness, here we see the ways in which power can sometimes be considered a tool for community formation as biopower sets up the conditions that make biosociality possible . In some ways then, power which initially set out to medicalize and classify deafness via biopolitics, can also be seen as contributing to the strong emergence of Deaf culture and the Deaf community who fiercely advocate an alternative way of life which can be viewed as a form of counter-hegemony. Ergo, Deaf culture and the Deaf community are not merely created because of power, but more “in spite of power” . Members of such culture/community do not see deafness as a “disability,” but as something beautiful, with its own language and culture that receives little appreciation from the hearing world for their contributions to society. Members take pride in being deaf and communicating via ASL, contrary to popular belief. Through a variety of scholarly works, it is also possible glean an image of Deaf culture that seems to be inclusive, allowing new members from different cultures, races, and ethnicities to become part of this ever-growing community. The Deaf community initially rejected people who were deaf and LGBT, and many people recall experiencing prejudice, hostility, and violence from the Deaf community. For current LGBT members, little insight exists on the challenges of being a “double-minority.” In the literature that does exist, an image of double-minorities emerges in which many struggle to find spaces in which they truly feel welcome which can be challenging and lonely [1]. There remains a lack of LGBT deaf literature, media, or depictions of experiences and challenges. In this, we see how a variety of intersecting social locations can work to cause further oppression and prejudice.

ASL

American Sign Language is the primary form of sign language used throughout the United States and Anglophone Canada, although many variations exit within different communities, ex. African American. ASL is a “natural language with its own grammatical features and modes of expression” . With all its variants, sign language stands in opposition to the heralded hearing route via cochlear implementation. Even with implantation, the Deaf community holds that all deaf children should be exposed to sign language in order to be exposed to the rich culture and history of the Deaf community.

Cochlear Impants

What Does a Cochlear Implant Sound Like: Expectations vs. Reality

A Cochlear Implant “is an electronic medical device that replaces the function of the damaged inner ear. Unlike hearing aids, which make sounds louder, cochlear implants do the work of damaged parts of the inner ear [the cochlea] to provide sound signals to the brain [2]. Since it’s indoctrination in the late twentieth century, the cochlear implant has been heralded by the hearing world as providing a “hearing revolution,” yet, the cochlear implant is not a "Band-Aid" solution as it takes years of auditory verbal therapy for a deaf child to learn how to listen and how to speak, and at that, the results remain largely inconsistent. While the cochlear implant is advocated by medical professionals and many hearing parents of deaf children, those who are pro-Deaf culture, primarily the Deaf community, advocate for the authenticity of Deaf culture as a diverse “co-cultural minority” who seek to promote an alternative Deaf ideology which sees deafness as another way of life, rather than a “disease or deficiency” that requires invasive medical intervention at the earliest stages of life . What is often left out of medical consultations concerning cochlear implants is the fact that anger, frustration, and resentment can often result as the child attempts to perform proficiently in the hearing world in order to integrate into a society which views deafness as an abnormality in need of a “miracle” fix . Sparrow has criticized the medical approach to deafness by suggesting that “the search for a cure for deafness represents the desire of a majority culture to impose its language and values on the Deaf rather than modify its institutions to take account of the perspectives and needs of members of another culture” .

The Medicalization of Deafness

Medicalization is the process by which certain human characteristics or conditions exit the realm of personal responsibility and come to be regarded as medical conditions that warrant western medical intervention. However, the Deaf Community challenges the hearing world to be critical of such an imposed ideological view which purports do define what it means to be Deaf [3]. The widespread definition of “Deafness” as a medical condition, as a "disease" according to the CDC, or an inadequacy, has been implanted into Western societies’ ideological thinking since the early nineteenth century. The early twentieth century hence bore witness to a new age of otologists who endeavoured to create new research methods for “curing” hearing loss/deafness. This collegiality henceforth defined the medical discourse surrounding hearing impairment, imbedding it in hearing tests and various hearing aids, in so doing, fossilizing the notion that deafness was a medical “problem.” Public health campaigns consequently became essential in disseminating this message throughout the western world . With the variety of medical “solutions” available today, most notably, the surgical operation to receive a cochlear implant, this type of pathological ideology has solidified, and it imposes a set of beliefs that affix value to the ability to live in the hearing world, i.e. being capable of hearing and communicating vocally. Yet, recent research has shown that there are “noticeable inequities” in access to such surgical procedures in western countries. It has also found that parents of newly diagnosed deaf children are not provided with access to all the possibilities for their children, including the option to live a "Deaf-life" . The debate continues to be polarized today between those who advocate for a Deaf-life and access to ASL and those who advocate for the surgical option that claims to bestow “independence through listening and talking,” yet, the results of such procedures are far from homogenous and thus cannot be considered a quick fix to a condition assumed to need medical intervention .

The Culture Clash over Cochlear Implants

Peter Conrad attests that the “social constructionist perspective” can aid in one’s understanding of the resistance and antipathy toward cochlear implants by the Deaf community: “While parents of deaf children hope the implant will make their children as normal as possible by giving them at least some ability to hear, the deaf community contends that deafness is not a medical defect but a cultural identity with its own language [which] implants undermine” . Harlan Lane, in another vein, writes powerfully about biopower in his discussion of cochlear implants: "This is biopower: massive intervention in the life of the child in an attempt to impose the majority's language, culture, and values" . Elaine Gale also warns about practicing “invasive surgery upon defenceless children” without first establishing the permanent "physical, emotional, and social" implications upon said children . Additionally, Deaf advocates advise caution when accepting and implementing “technological magic;” defenders of Deaf-life worry that the “sensationalism” surrounding cochlear implantation furthers the tendency that hearing people have to look for “cures to deafness” . The culture clash over cochlear implants is thus palpable between these two groups: hearing and Deaf. The views examined here are found in a variety of places and sources. For example, the movie Sound and Fury, follows one Deaf family as they navigate the options for their Deaf child, Heather Artinian. While her parents ultimately chose to forgo implantation, Heather later, in early adolescence, made the choice to receive a cochlear implant. Nine years later, in 2013, she gave a powerful TedTalk titled “Not the Hearing or Deaf World” [4] in which she discusses the challenges and personal break-throughs in her own life. Ultimately, her message is that people do not need to choose between the Deaf-world and the hearing-world, she said she opted instead to live in the “Heather-world.” Heather’s TedTalk communicates not only the powerful message of choice, but the difficulty of navigating intersecting social locations, and the difficulty involved when attempting to stratal two opposing “worlds” and find one’s place. Heather’s experience is of course unique to her own life and social locations, many Deaf individuals must navigate their own route, which can be very challenging and emotionally strenuous. When querying a cochlear implant, one must again be very sure that the benefits of such a regime will be very impressive, and this is not necessarily the case in all Deaf persons. While obvious hindrances exist when navigating the hearing world, Deaf individuals are not above bigotry, in some cases advocates “warn ominously” that implanted children will be ostracized by the Deaf community as adults which is nothing less “cultural terrorism” . While the passion with which Deaf individuals advocate is powerful, they must be wary of such statements that function to ostracize children who were very much at the mercy of their parent’s (mostly) informed decision to implant. It thus holds, as Kara Shultz contends, that cochlear implants are a contemporary example of the decreasing boundary “between humans and machines and the painful moral dilemmas which inevitably must be faced as science outpaces moral guidelines” .

Summary

Society must be wary of defining certain sub-cultural groups, like Deaf culture or the Deaf community as "defecient," "dumb," "disabled," or in need of medical intervention. Implantation cannot be considered the first and only "solution," choosing to get a cochlear implant should be different for every individual depending on their wants and needs in order to not impose hearing culture upon a child before they are exposed to Deaf culture or the possibilities available to them while living a Deaf-life. This imposition by the majority hearing population forces an ideology upon children and parents to choose what group to belong to before seeking all the knowledge. With the uniqueness of every living being and the social locations which they bring with them, living in a world in which things are divided into binaries (hearing or deaf) can no longer be considered appropriate when approaching the topic through an intersectional lens. We as a society, must be conscious of a history of ingrained stereotypes regarding deaf people and their culture and seek further understanding before judgement, this includes being quick to medicalize a condition when the majority of deaf individuals celebrate their deafness and their involvement within the Deaf community and society at large.

Further Reading and Links

Deaf Culture Links

1) The Canadian Hearing Society: http://www.chs.ca/deaf-culture-and-community

2) Western Institute for the Deaf and Hard of Hearing: http://www.widhh.com/information-library/about-deaf-culture/

3) BC Cultural Society for the Deaf: http://www.bccsd.ca

4) Deaf Children’s Society of BC: http://www.deafchildren.bc.ca

5) Deaf Culture Centre: https://deafculturecentre.ca

6) Deaf Well Being: http://deafwellbeing.vch.ca

7) World Federation of the Deaf: http://wfdeaf.org

Cochlear Implant Links

1) Cochlear: https://www.cochlear.com/au/home/understand/hearing-and-hl/hl-treatments/cochlear-implant

3) Healthy Hearing: https://www.healthyhearing.com/help/hearing-aids/cochlear-implants

4) Cochlear Implants in the Paediatric Population: A Scan of Canadian Provinces: https://www.cadth.ca/cochlear-implants-pediatric-population-scan-canadian-provinces