Running head: FINDING BALANCE 1

Finding Balance: Deaf Culture and Cochlear Implants

Melissa K. Recht

Wright State University

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Finding Balance: Deaf Culture and Cochlear Implants

The richness and diversity of Deaf culture are undeniable. Bauman and Murray (2014)

and Lane (1996) tout the strong sense of community among Deaf people, many of whom are

born Deaf, marry other Deaf people, and embrace American Sign Language. There are also deaf

people who do not associate with the cultural aspects of what they may consider a disability,

either because they have not been exposed to Deaf culture or because they lost their hearing later

in life. There are also many people, including parents of children born with hearing loss, who

believe that hearing loss is a medical issue that can be remedied. The tension between these two

groups is evident when the topic of cochlear implants is broached (Maudlin, 2016; Padden and

Humphries, 2005). Cochlear implants are considered to be a major medical advancement

(Tucker, 1998), but many in the Deaf community think they are invasive and culture-killing

(Lee, 2012; Senghas and Monaghan, 2002; Maudlin, 2016). On the other side, many hearing

parents of children with hearing loss or deafness believe cochlear implants are a way to provide a

better life for their children (Maudlin, 2016). This author seeks to better understand both sides by

exploring each argument. First, we must recognize that the ethics of disability are constantly in

flux (especially as technology emerges and cultural shifts occur). We should also consider that

researchers and disability experts weighing in on this are not necessarily impartial. The ethics of

disability are colored by experience, culture, and education. The issue is hotly contested in part

because of the experiences of people on both sides of the argument. Levy (2002) presents the

issue eloquently, stating, “The debate over the use of cochlear implants presents us with a

genuine moral dilemma, in the sense that whatever course of action turns out to be, on balance,
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the best will carry with it a heavy cost: either the destruction of a culture or the sacrifice of the

interests of potential implant recipients” (p. 35).

Considering the sharply polarizing debate and the difficulty in establishing what a “best”

future for a child might be or what the right decision for a Deaf adult is, I argue that both sides

have a right to choose whether or not a medical intervention is right for them. If personal choice

is respected, allowed, and supported by both communities, the polarization of this issue could be

transformed into a productive partnerships that allows for Deaf culture to flourish even if

cochlear implants are common.

Up for Debate

Because parents often want their children to be like them and have similar experiences

and opportunities, it makes sense to recognize that choices about socialization, language, medical

procedures, and schooling can and will be different based on the beliefs of family, culture, and

community. This, of course, is true for Deaf and hearing parents. Cochlear implants should not

be forced upon any family, and respect should be paid to the important cultural and social

aspects of Deafness. On the other hand, cochlear implants should not be considered an evil

device that will destroy the culture of Deafness. Medical improvements can go hand in hand with

an embrace of diversity (and in fact should be considered another aspect of diversity). The well-

being of a child is important, but when it comes to diversity of medical or cultural choices, a

parent or guardian is often the best resource for deciding what well-being looks like. The

dilemma is that both side propose very different ways of thinking about the child’s well-being.

Even Deaf culture researcher Harlan Lane (1996) seems to support this in his writings,

reminding his readers that both the camp that sees deafness or hearing loss as a disability and the

camp that sees Deafness as a linguistic majority each have claims that have merit (p. 81).
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Is Deaf Culture at Risk?

One of the strongest arguments against routine cochlear implants is that many members

of the deaf community believe that Deafness is not a disability (Levy, 2002). Instead, they

believe that the disabling effect of not being able to hear is a result of the social barriers in place,

not because of the medical diagnosis of deafness. Indeed, Deaf people believe that their loss of

hearing is actually a “Deaf-Gain,” with a myriad of benefits that range from an important

linguistic culture, sensory insights and knowledge that hearing people do not have, and a rich

community-based lifestyle that is enhanced by their differences from the rest of society (Bauman

and Murray, 2010). It is this community-based lifestyle that is one of the most influential part of

the argument against cochlear implants. Cherny (1999) call this identity politics and writes that

the Deaf strongly identify as a minority culture. Because Deaf community members have this

strong identity pride and thus often do not consider themselves disabled, it is not surprising that

they would not choose to fix something they do not see as broken. When their children are born

Deaf, they celebrate this as special (Lane, 1996; Kafer, 2004). The Deaf community also

considers themselves a linguistic minority, a further departure from the idea that Deafness is a

disability. They believe they have more in common with ethnic groups because of this cultural

and linguistic difference, rather than the disability umbrella they are placed under (Lane, 1994;

Kafer, 2004).

Thus, giving a Deaf child of Deaf parents cochlear implants theoretically separates them

from their culture. While hearing folks may believe the deafness separates people from the rest

of society, Deaf people believe that cochlear implants would be the cause of true separation

(Cherny, 1999). And this would be a separation that would not be easily remedied. These are

strong and valid arguments about the rights of Deaf people to refuse a technology that would be
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difficult to reverse. Cochlear implants are surgically affixed inside the brain-they were created to

“cure” or fix deafness, in a way in which a Deaf person would be hard pressed to undo (Lee,

2012). Unlike hearing aids and other assistive technologies (glasses, wheelchairs, leg braces, and

the like), cochlear implants are a more permanent “cure.” In addition, as Senghas and Monaghan

(2002) note, this medicalized intervention clearly implies that deafness is a disability, which

brings into the debate the many polarizing issues around what it means to be disabled (by others

and by oneself).

Of course, the risks inherent with any surgical procedure need also be considered (Padden

& Humphries, 2005). Is it fair to a child to have to undergo a painful surgery that some would

consider elective? Does the possible long-term benefit outweigh the recovery time and the many

months of training the brain to respond to the implant? While this is hard to quantify, it must be

considered.

Deaf activists also point out that it is unethical to make a decision about hearing that a

child may not agree with later (Maudlin, 2016; Cherney, 2000). But supporters of cochlear

implants could counter that the advances in hearing and speech that result from the implants will

have the most impact if done early, before a child is speaking, as Maudlin (2016) describes.

When proponents of a Deaf lifestyle without technological enhancements state that it should be a

person’s choice whether or not they use adaptive technology, the importance of implanting the

assistive devices early presents a difficult conundrum. If the Deaf parent chooses not to utilize

this form of assistive technology, they are effectively taking that option away from the child. It

seems that it would be much easier for that child, as an adolescent or adult, to make the decision

to stop using cochlear implants or other assistive technologies, rather than the reverse.
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The desire to keep the Deaf culture intact is valid and valuable. But how does that

translate for deaf children who are not a part of a strong and vibrant Deaf culture? Born to

hearing parents, these children could be considered to be separated from the society in which

they live. They may be the only person in their family and even in their community who cannot

hear. While family members could certainly learn ASL and utilize other methods of

communication (and certainly could discover and cherish the unique aspects of Deafness), it

stands to reason that, exactly like Deaf parents, hearing parents would also want their child to be

like them, experience what they experience, and communicate with them in the way they feel

most comfortable. It does not seem appropriate that one group’s personal choices would be

considered more valid than the other.

What do we make of arguments that hearing parents who choose cochlear implants for a

deaf child are are harming them by taking away their connection to Deaf culture? Would these

children have easily found a Deaf culture to be a part of in, for example, a small Ohio

community? As the only deaf child in a school district, would they have had the rich cultural

experience of using ASL regularly with multiple people? Lane (1996) readily admits that this

presents a problem--the scattered nature of people proficient in ASL means many Deaf people do

not learn ASL until they are in school (or even later), which certainly makes it a bit harder to

claim the Deaf culture is comparable to other linguistic minorities and definitely means that a

child growing up in a hearing family could struggle to connect to a Deaf culture (p. 87). Beyond

language and communication, one also wonders if a person living in an area with fewer Deaf

people would find Deaf partners or Deaf friends, as many Deaf people who have an extensive

community do. Are the first 18 years of their life, with parents and family members and friends

who are hearing, more or less valuable than the choices they would make as adults when they
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could search out a Deaf culture? It is impossible to know, but certainly understandable that the

parent of a child who is born with hearing loss would try to ensure that their child could have an

easier time, without worrying as much about what that child will experience as an adult.

The Deaf community is not large enough to ensure that a person would be able to easily

find a job or other resources without encountering and interacting with hearing people. While the

culture and community is robust, it is not self-sufficient and members of the community will still

interact with the wider world. And unlike other linguistic or cultural minorities, the numbers are

often small and close or consistent contact may not be possible for a Deaf child born to hearing

parents. Lane (1996) seems to suggest that an ideal Deaf-World would allow all Deaf children to

be in close contact with Deaf adults so that they would have the kind of intervention he deems

most appropriate (making sure they have linguistic teachers and role models) instead of medical

interventions (p. 87). Although this idea is posited, along with others, in a theoretical world that

would embrace Deafness, it is not necessarily feasible to create these kinds of relationships.

Either way, Lane (1996) also understands that it can be difficult to determine what is in the best

interest for a child--in effect, which camp they might fall into.

Finding Balance

Finding the balance between the two opposing viewpoints, while difficult, seems to be

the superior solution. The ongoing debate that seesaws between seeing disability as a curable

medical issue, a social problem that could be remedied by barrier removal and cultural changes,

or a political and justice-related meld that allows for multiple viewpoints (and a radical

reimagining of disability in general) reminds us that even after decades of research, discussion,

and passion, there is no one right way to consider disability. Suggesting that a universal decision

should be made on cochlear implants is impractical. Personal stories from both sides abound,
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presenting distinctly different experiences about this one augmentative technology. It would be

impossible to say whether someone with a cochlear implant would be happier without it, or if

someone who did not receive one would have found a vastly different and more positive life with

one. It is one part of a broader debate about the constantly evolving technologies that are in use

and being created that make even minor impairments non-issues. The debate could be widened to

consider eyeglasses, hearing aides, bionic legs, wheelchairs, computers that allow people to

speak, and on and on. What line does society draw (if society should draw a line at all) about

which assistive devices are okay and which ones are invasive? Cherny (2000), discussing

cochlear implants and other “bionics,” writes, “Different cultural orientations read and locate the

body and its constituent parts in distinct ways, and the controversy arises as each culture

advocates their ideas of the body to shape policy over the contested technology (np).” Deaf

people and many others in the disability community certainly have the right to establish what

their bodies and impairments mean to them and to society, and make decisions about what

technologies are assistive and necessary and what technologies in essence “change” them enough

so that their disability is no longer a defining part of them. The controversy occurs when others

try to decide for them.

If the choice to implant (or not implant) a device that allows a child to hear is made by

the parent (and not, for example, by the government), or if an adult person makes this decision

for themselves, they are exercising their own free will. Deaf parents could choose to forgo

normalizing technologies and continue to embrace the rich cultural and linguistic experiences

that are a part of their community. Lane (1996) writes that, “Organizations espousing each

construction of deafness compete to ‘own’ the children and define the needs,” (p. 81).
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While parents may not actually be “competing,” when they make decisions about their

children, the medical or cultural organizations that are competing are funneling information,

opinions, and biases to them. This creates an even more polarizing environment. But there could

be ways to bridge this divide. Creating a conversation around keeping a Deaf culture alive even

for implanted children could make cochlear implants less political. Maudlin (2016) recounts the

stories of numerous parents who were told not to sign with their implanted children (who, of

course, were still technically deaf) even though it might have helped ease communication issues

and certainly would have been beneficial for when the child did not have the device turned on.

Advances could certainly be made to ensure that the children with implants continue to learn and

use ASL, as suggested by Padden and Humphries (2005), as opposed to the rigid, medicalized

view that all sign language should cease upon implantation. When possible, children with

implants could also be introduced to Deaf people, perhaps through Deaf clubs or organizations.

Many cities have active Deaf clubs (Padden & Humphries, 2005) and this could be a useful way

to help Deaf children continue to have a tie to Deaf culture. Clinics and doctors could also

provide connections for parents considering cochlear implants to meet local Deaf people or

parents of children who primarily use ASL so that they might see firsthand the rich culture and

linguistic community their child could be a part of (with or without cochlear implants). It sounds

farfetched to imagine the medical field incorporating some of the societal imperatives to keep

Deaf culture alive, but with increasing awareness of how valuable (and fragile) the Deaf culture

is, perhaps it could be done. Advocacy by the Deaf community, as well as by family and

supporters of those in the community, could go a long way towards de-medicalizing Deafness.

As technological advances continue to emerge, the debate around what defines disability

and culture. Decades (and certainly centuries) ago, the adaptive devices and procedures that are
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common today would have been unthinkable. In 2017, people wear glasses and contacts and get

Lasik or cataract surgery. People wear highly sensitive hearing aids, have motorized wheelchairs

and scooters, use elevators and ramps. People have ACL and spinal surgeries, physical therapy,

stem cell therapy, antidepressants and ADHD medications. People embrace therapy dogs and

utilize painkillers and call loved ones on TTY phones. While cochlear implants may be a step

beyond some of these advances, it is in the same vein. Much like these other advances, choice is

a factor. While the argument about Deaf culture dying is tied up with this particular technology

and provides an important counterpoint to the highly medicalized view that Deafness can be

cured, one could theoretically extend the argument to other technologies that are regularly used

even by disability activists or even by people who are not considered disabled.

These subtleties are exactly why neither side of the divide can win this argument, and

why it could be far more beneficial to find common ground, explore both viewpoints, and

establish that both supporters of cochlear implants and supporters of keeping the Deaf culture

more deeply intact could work together to find solutions for problems Deaf people might face

while also exploring the benefits of having hearing. Maudlin (2016) writes of a “deaf futurism”

that could include these new advances and embrace the changing experiences of being d/Deaf (p.

163). Finding this balance between technology and culture is increasingly important.
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References

Bauman, H.L. & Murray, J.J. (2010). Deaf studies in the 21st century: “Deaf-Gain” and the
future of human diversity. The Oxford handbook of Deaf studies, language, and
education, Vol. 2.

Cherney, J. L. (1999). Deaf Culture and the cochlear implant debate: Cyborg politics and the
identity of people with disabilities. Argumentation and advocacy, 36(1), 22-34.

Kafer, A. (2011). Debating feminist futures: Slippery slopes, cultural anxiety, and the case of the
Deaf lesbians. Feminist disability studies. Bloomington: Indiana University Press.

Lane, H. (1996). Constructions of deafness. Disability and society, Vol. 10, Issue 2.

Lee, C. (2012). Deafness and Cochlear Implants: A Deaf scholar’s perspective. Journal of child
neurology, 27(6), 821-823. doi:10.1177/0883073812441248
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Levy, N. (2002). Reconsidering cochlear implants: the lessons of Martha's Vineyard. Bioethics,
16(2), 134-153.

Maudlin, L. (2016). Made to hear: Cochlear implants and raising deaf children. Minneapolis:
University of Minnesota Press.

Padden, C & Humphries, T (2005). Inside deaf culture. Cambridge: Harvard University Press.

Tucker, B. (1998). Deaf culture, cochlear implants, and elective disability. Hastings Center
Report, 28(4), 6-14.

Senghas, R. & Monaghan, L. (2002). Signs of their times: Deaf communities and the culture of
language. Annual review of anthropology, 69.