Alice De Gentile first heard her mother’s voice when she was seven; due to a congenital cochlear malformation, she was born deaf in both ears. Her hearing parents had very limited knowledge of the Deaf community. Nevertheless, they faced an important decision: whether or not to get their daughter a cochlear implant.
Like Alice, more than 90 percent of deaf children in the United States have hearing parents. Most parents then opt to fit their child for a cochlear implant, a device through which electrical stimulation of the ear replicates sound, rather than to embrace their child’s deafness and to learn American Sign Language at home. While this may seem like an easy decision, it is a complex one; by portraying cochlear implants as a foolproof “remedy” for deafness, parents might not only keep the child from finding their place in the Deaf community, but also tend to skew their self-image by making them measure themselves by the standards of the hearing world and thus setting them up for disappointment.
The increasing pressure for members of the Deaf community to adapt to the hearing world disregards the richness and history of their culture, and the value of their perspective. We should expand our understanding of deafness not as a disability, but as a difference, as a unifying factor for a community with its own history and culture.
Regardless of their decision on cochlear implants, hearing parents should consider educating themselves and their children on the cultural significance of the Deaf community. This knowledge will avoid portraying their child’s deafness as an “impairment,” allow them to learn more about deaf experiences and ensure their child doesn’t feel out of place in both the hearing world and the Deaf world.
- Deafness & Disability: A Reductive Definition
Currently, the official definition from the American Disability Act describes deafness as “a physical […] impairment that substantially limits one or more major life activities.” Under this definition, the term “deaf” refers to a limited group of people, whose profound hearing impairment limits their ability to rely on hearing to communicate with others.
However, Alice agrees that this definition is too reductive:
“If we want to focus on the scientific condition, this definition is technically correct,” she says, “but if we want to look at the person as a whole, it is incomplete. I am deaf, but my deafness is not just a disability. It is also a strength.”
While this definition grants important rights to the deaf and hard of hearing, research published in the Journal of Deaf Studies and Deaf Education argued that this “unsuitable construction of the Deaf-World as a disability group” has resulted in discouraging many Deaf children from learning the language and culture of the community. In this case, legally classifying deafness as a disability results in some people internalizing that definition; therefore, deaf or hard of hearing individuals (D/HH) will tend to consider themselves “disabled.” For example, when researchers asked deaf and hearing participants to rank the suitability of both hearing and deaf candidates for various careers, both groups rated deaf candidates as less suitable to pursue 10 out of 14 occupations, even when told that both candidates had the same abilities necessary for the position. Additionally, none of the participants rated deaf individuals as better candidates for any of the 14 positions. This survey is but one example of how this incomplete legal definition of deafness can negatively impact feelings of self-worth and to eventually limit opportunities.
Additionally, unilateral representation of deafness in the media contributes to feelings of inadequacy. Frequently, deaf characters are unable to speak, or speak very little, and their deafness is often used as a simple character trait. Alice, who was born deaf yet speaks several languages fluently, deplores this lack of diverse representation in the media:
“When you read articles or watch TV shows, you only see one type of deaf person. This is missing the point of the deaf community entirely — there is such a richness and diversity that relying on a stereotype is not enough.”
On a more positive note, American Sign Language (ASL) is now more present on screen; A Quiet Place relied entirely on ASL and achieved great success, making a net profit of $93 million in 2018. However, certain movies continue to feature gibberish or botched sign language instead of proper ASL, not caring enough for their deaf viewers to avoid misrepresentation. Not only is this choice disrespectful to the Deaf community; it also takes opportunities away from deaf actors to properly honor their language and culture on screen, and relies instead on the same old patronizing stereotypes about the deaf community for profit. For example, the director of Netflix’s “The Silence” came under fire for casting a hearing actress in a deaf role and congratulating her for her “ almost innate sense of what it’s like being a deaf person.” The use of ASL in this horror movie was in fact so botched that deaf activist Nyle DiMarco stated :
“If everybody knew sign language, The Silence on Netflix would be a comedy film.”
His message is clear: deafness cannot be reduced to a stereotype.
2. Cochlear Implants: A Threat to Deaf Culture?
Clearly, the complete definition of the Deaf community goes beyond that of an impairment. However, before discussing new ways of framing this community, we should talk about why this discussion matters. What is the role of cochlear implants in the divide in the Deaf community and why are some deaf activists talking about it as a threat to Deaf culture?
Efforts to adapt to the Hearing world are dividing the Deaf community. Today, the National Institute on Deafness and Other Communication Disorders estimates that roughly 324,200 people around the world have been fitted for a cochlear implant, including over 96,000 in the US. Of course, these implants have some benefits, like improving hearing, making speech comprehensible, and allowing for the distinction between sounds’ volume. Some implant recipients can even enjoy music — to some extent.
However, what many don’t know is that the implant requires time to get used to and to notice progressive results, in particular with children, as they have to completely rewire their brain and its relationship with sound. Therefore, this process can be frustrating at first, and doesn’t guarantee immediate results. In this respect, the biggest fallacy regarding implants is their ability to “restore hearing”; while the sounds generated are audible, they have a distinct “mechanical” feel, according to implant recipients. A woman recalls the experience of her implant activation after her hearing loss:
“Emotionally, it was hard to appreciate the sound coming from the implant because of the strange quality. I was sad and scared that my hearing would always sound bad with the implant, and I had some fleeting thoughts of regret.”
Additionally, the recipient of the implant typically cannot clearly distinguish where sound comes from. Alice concludes that “despite their usefulness, there are major obstacles to cochlear implants”; she mentions her inability to distinguish the sound of classical music from hard rock in certain situations, and the need for complementary lip reading or signed speech to facilitate communication.
“If I didn’t have lip reading to communicate,” she says, “the implant would be almost superfluous.”
The FDA itself acknowledges these limitations, stating that all participants do not obtain the same results, and that some recipients “may not be able to hear language well.” This variety in experiences has led some members of the deaf community to criticize viral videos like “Hearing My Husband Say I Love You For the First Time”. While these videos are touching, activists argue that they glamorize and sensationalize cochlear implantation, without discussing the choice behind the surgery. This trend doesn’t show the public the months or sometimes years of training necessary in order to be able to distinguish speech clearly, and doesn’t show the sometimes negative reactions that some might have when hearing for the first time.
Since an implant does not provide unambiguous access to language, it may “delay child[ren’s] language acquisition” if not complemented with sign language or another form of visual communication. This is why professionals encourage hearing parents to teach their children sign language or other forms of visual communication.
3. The Story of Two Communities: When Communication is Divisive
So, what are the options for visual communication? First, lip reading is common – although unfortunately, when using masks, it is not an option.
Sign language is the other common solution. L’Eppe, the “Father of the Deaf,” first standardized this method in France in 1760. Inspired by l’Eppe’s Royal Institute of the Deaf-Mutes in Paris, Thomas Hopkins Gallaudet eventually created the first American public school in 1817, and standardized American Sign Language shortly after. Gallaudet’s son then created the first American college for the deaf in Washington D.C., which is still the only one of its kind worldwide.
So, what’s the significance of sign language? For one, it is the central cultural tie between members of the Deaf community. Its value lies in its variety; just like there is no universal spoken language, cultural variations and traditions within deaf communities everywhere were bound to birth various forms of communication. Singular expressions and signs reflect this history: for example, “Coke” is signed by pointing your finger at the veins inside your elbow, supposedly dating back from when the brand actually used a small dose of cocaine. Sign language also reflects cultural differences, so there are variations of ASL based on location (ex. Texan dialectic signs), race (like “Black ASL”), age (use of “slang”) and more. Over time, the language developed its own syntax and grammar.
Unfortunately, educators incorrectly saw sign language as limiting children’s development and decided at the Milan conference in 1880 that “oral” methods of communication were superior, banning the use of sign in schools. Teachers sometimes enforced this rule through cruel methods, like tying deaf children’s hands behind their back to prevent them from signing.
Finally, a third method of communication emerged about 50 years ago: cued speech. Cued speech is an alternative to sign language in which people use hand gestures not to form individual words like in ASL, but rather, to “spell” sounds of words in addition to mouthing them, following the English grammar and sentence structure. While it might be difficult for hearing individuals to grasp the significance of that difference, the rise of cued speech is dividing the deaf community. Some regard it as an “oralist” method of communication, a refusal to learn sign language and an effort to adapt signing to English grammar and rules instead, thus pandering to the hearing world.
In a study conducted on communicative habilitation of the Deaf, participants stated that being called “oral” in the Deaf community is “unacceptable” and indicates that “you have uncritically accepted alien values that place a premium on speech.” Alice acknowledges the existence of this divide :
“Deaf people are divided in two,” she says. “There are deaf signers, who are considered as not knowing how to speak, and deaf oralists, who use cued speech, can speak, and are relatively well integrated in society. There are two worlds within the same world ; the story of two communities.”
While this relationship is now improving, she adds that deaf signers once attacked one of her friends for using cued speech. In the same way, some members of the Deaf community see the use of cochlear implants as an “oralist” move away from traditional Deaf culture.
4. Deaf Power: Redefining Deafness
Instead, we should define deafness as its members do; as a difference, heritage, culture, and the vector of a historically rich community… for those who identify as such. Indeed, not all deaf or hard of hearing individuals know about or identify with the cultural aspect of deafness. This is why a new definition has emerged: the “culturally Deaf”, with a capital D. This has become the way of distinguishing between the physical aspect of hearing loss, and the cultural significance of the Deaf community.
The “Deaf Power” movement has embodied this new perception of deafness by framing it as a cultural difference and even as a potential ethnic group – although of course, the key distinction with other ethnic groups is that members can enter that community over time by becoming deaf. The emergence of the Deaf Civil Rights movement in the 1990s allowed this community to gain visibility, and to promote the Deaf culture as an identity rather than a disability.
Finally, studies have concluded that individuals who identify as being part of the Deaf community often show higher levels of self-esteem and have more confidence deaf students’ abilities overall. This psychological effect is the very reason why we should broaden our definition of deafness and challenge stereotypes about the Deaf world.
- What You Should Take Away From This
Therefore, reframing our view of the Deaf community is critical in order to better grasp the nuances of the dilemma faced by parents with deaf children. It is time to see deafness not as a deficit, but as a difference, as well as a cultural identity for those who identify as “culturally Deaf”.
In order to reframe our approach to the issue, we should always question the role of the hearing world as the default and try to break down the barrier that separates us from the Deaf world. I call for a reconciliation of the Deaf and hearing world, encouraging hearing parents to learn ASL or complement their child’s implant with another sort of signed speech (cued speech). Additionally, the hearing world should start questioning deaf stereotypes perpetuated by the media and educate itself about the true richness and diversity of experiences in the deaf world.
Because in the past, the Deaf world has been forced to adapt to the hearing, sometimes in violent ways, I argue that we must look to the hearing world for a change in perspective. We are the hearing majority; it is easy for us to consider our own oralist experience universal, conventional, and optimal. However, I hope that through this article, I was able to make you reframe your experience as a hearing person in a world in which some are born or become deaf. Remember: it is their world too.
Featured Image Source: “You See Me” (2018) is a painting created by artist Ashley Hannan as part of her collection “Rise Up: Silent Margins.” It represents diversity in the deaf world and depicts the artist’s search for identity as an oral deaf person. Here, the two characters are singing the word “same” in American Sign Language to express that their deafness is valid, regardless of background and implant choice.