Hear Me Out

On January 5, 2007, YouTuber Kwilinski uploaded a video of a deaf six-month-old boy reacting to the activation of his cochlear implant device. Others began to post similar videos. With titles like “Baby Aida Reacts to Hearing Her Parents’ Voices for the First Time” and “Hearing My Husband Say I Love You For the First Time,” cochlear implant activation videos became an ongoing viral trend. The most popular, “29-Year-Old and Hearing Myself for the First Time!” was uploaded by Churman¹ in 2011 and amassed 27 million views and 57,000 comments. The video received 260,000 likes and was praised for being “heartwarming” and “uplifting.” It also elicited hundreds of furious comments and 4,000 dislikes. Many hearing people might wonder who would criticize such an inspirational video?

Sensationalizing Cochlear Implants

Cochlear implant surgery is controversial, at least in the Deaf community. Cochlear implants are not a “miracle cure” for deafness. The YouTube “comments sections” of cochlear implant activation videos have become a forum for the controversy. The postings are often bitter, demeaning, and often anonymously delivered. After reviewing these comments, I believe that there are valid arguments on both sides of the debate. Arriving at an acceptable compromise may be possible if we endeavor to better understand each opposing viewpoints.

In her 2014 article “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos,” Lilit Marcus,² a CODA (Child of Deaf Adults) and member of the Deaf activist community, expresses her disdain for the YouTube trend of cochlear implant activation videos. She claims that they sensationalize and romanticize cochlear implants while whitewashing the struggles recipients face. Although Marcus has no problem with those who make the personal medical decision to receive cochlear implants, she does have a problem with “the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world.” The author further notes “how the viewer never learns how the individual came to the decision about their implant, and which factors they took into account.”²

She believes the videos sugarcoat the shock and horror many recipients experience. When the implant is first activated, some recipients often sob convulsively in a fearful response to the sudden flood of sensory inputs. This sort of somber reaction is seldom seen online. In the viral video “My Cochlear Implant Activation!” Ann Swartz commented, “Deaf children always seem to smile when they hear for the first time.”³ Titles such as “Hearing My Husband Say I Love You for the First Time!” may downplay the recipient’s recovery while glamorizing the activation experience, as they suggest that recipients can process and comprehend speech immediately. It takes months, sometimes even years, before cochlear implants can function fully. The brain needs time to “rewire itself before it can even comprehend the new sensory input.”⁴ Recipients must then undergo extensive speech therapy to learn the meaning of all the new sounds.

The most erroneous message the videos propagate is that cochlear implants fully transform deaf individuals into hearing ones. With present technology cochlear implants are a tool, not a cure. The most successful cochlear surgeries never restore full, natural hearing. Many recipients struggle to distinguish sounds, particularly in environments with a lot of background noise.⁵ The comments on many of these videos embrace the fallacy that cochlear implants are a one-size-fits-all solution.

This misconception may harm pediatric recipients. Some parents of children with cochlear implants believe their child is “hearing” like them, so they do not teach their child American Sign Language (ASL). Not learning sign language may delay their child’s language acquisition.⁶ According to the National Association of the Deaf (NAD), cochlear implants do not provide recipients with “clear and unambiguous access” to linguistic input in the same way that sign language does. For young children learning their primary language, “reliance on only spoken language input via cochlear implants may result in linguistic deprivation if sign language is excluded from [their] environment.”⁷

Implications of Cochlear Implants for the Deaf Community

While many people object to cochlear implant activation videos on the basis that they are sensationalizing and reductive, others oppose them for being oppressive and offensive. For these critics, deafness is not defined by the lack of ability to hear, but rather, by a distinct cultural identity of which they are proud. They believe the word “deaf ” with a lowercase “d” refers to “the audiologic lack of hearing,” while the word “Deaf ” with an uppercase “D” refers to a cultural identity.⁸ Members of the Deaf community share essential ingredients of culture: a language, a history, institutions such as schools and clubs, sports, art, and movies. Due to these shared establishments, many Deaf individuals primarily socialize among themselves and “have limited social interactions with people from the majority culture.”⁸ Ninety-five percent of Deaf marriages involve two deaf partners.⁸ Because their deafness allows them to be a member of this supportive community, many Deaf people report that they do not want the ability to hear.⁹ According to the NAD, “Deaf people like being Deaf, want to be Deaf, and are proud of their Deafness”.⁷

Many Deaf culturalists are deeply offended by what they perceive to be the inherently negative implication of cochlear implants: deafness is a medical disability that should be cured rather than a cultural identity that should be celebrated and respected. The comments sections of cochlear implant activation videos are often flooded by angry remarks about how Deaf people do not need nor want to be “fixed.” On a YouTube video titled, “Deaf People Hearing Sound for the First Time [Compilation],” which amassed 6.6 million views, a commenter with the username “Tzion” passionately rebuked, “Can someone say inspiration porn??? We don’t need to be fixed so it’s easier on you hearing people with a thing that causes so many issues. How about actually learning to communicate with us?¹⁰

Not only do many Deaf culturalists find the assumption that they need to be “fixed” or “cured” insulting, some contend that cochlear implant technology threatens to destroy their culture. Because 90 percent of deaf children have hearing parents, cultural transmission of Deaf culture does not occur within families, but rather, through Deaf institutions.¹¹ As cochlear implants will inevitably lead to a decline in the number of ASL speakers, there is a fear that fewer people will participate in Deaf institutions, and eventually Deaf culture will disappear.

Believing that cochlear implant technology deprives the Deaf community of members and threatens Deaf culture, Deaf culturalists like Rob Sparrow feel that cochlear implants represent a form of minority oppression.¹¹ Some have even gone so far as to liken the act of “curing” deafness to genocide. These individuals believe that cochlear implant technology and Deaf culture cannot coexist. In ASL, the sign for cochlear implant is a “two-fingered stab to the back of the neck, indicating a ‘vampire’ in the cochlea.”⁹

Countering the Deaf Opposition to Cochlear Implants

The Deaf opposition to cochlear implants faces heavy and often brutal criticism, especially online. According to ASL, Saunders,⁶ online discourse has repeatedly accused Deaf culturalists of “victimizing themselves and creating trouble.” Yet the Deaf community is vastly underrepresented on social media compared to other cultural minorities and causes. Unlike written English, the order of words in ASL is dictated by the most efficient means of performing the appropriate hand gestures, and thus individuals whose primary language is ASL usually struggle to express themselves online. Discussions about issues relevant to the Deaf community often are dominated by those “opposing the Deaf cultural viewpoint.”⁶ Saunders terms the online bullying of the Deaf community as “cyberaudism.”⁶ In the comments section of a cochlear implant activation video with 2,500 dislikes, “Animegirl17” wrote, “Whoever [is] disliking these videos need to drink bleach.”¹⁰0 In response to a commenter who insisted deafness was a cultural identity, “AnomalyINC” wrote, “Being deaf is a handicap. So is being blind. Or mute. Or paralyzed. Or really, really stupid.” “Relaxed Cease” commented, “You suck, your opinion is wrong and I hope that you (expletive) off from videos of happy endings.”¹²

Since its invention in 1982, many people have seen the technology as an important advancement that creates opportunities for Deaf individuals. An article from 1988 contains an interview in which cochlear implant recipient Bill Boyle was asked if cochlear implants took away his Deaf pride, to which Boyle responded, “I feel the implant enhances my pride. I am proud to be overcoming what was considered a severe handicap, proud to be part of the community as a whole, not to a club of narrow-minded people.”⁹ Twenty years later, Boyle’s description of cochlear implant protestors as a “club of narrow-minded people” still reflects a sentiment held by many critics: the Deaf opposition to cochlear implants is tribalistic, militant, and values the interests of a culture over the interests of an individual.

In a 2017 cochlear implant activation video, “Cao Cao” commented, “Being proud of a disability is stupid. Serves no purpose and it’s not a culture. It’s a cult.”¹⁰ Although this comment is hostile, its comparison of the Deaf community to a cult is not invalid. Just as cults have been known to shun former members,¹³ many cochlear implant recipients report that they no longer feel welcome by their Deaf friends after surgery, and so they feel they must leave a community they have been a part of their entire lives.² The belief the government is actively scheming to destroy deaf culture and even commits “genocide” by funding cochlear implant research reflects the “us versus them” mentality for which cults are notorious. ^{11, 13}

Another longstanding argument is that it is immoral and even selfish for parents of deaf children to reject the use of cochlear implants simply because they want to preserve a culture. In the aforementioned 1988 interview, Melissa Chaikof, the mother of a cochlear implant recipient, reports, “In obtaining implants for our daughter, we did not have the ulterior motive of breaking down Deaf society.” Chaikof goes on to say that her “concern for [her] daughters’ future is far greater than for the future of Deaf society.”⁹ Similarly, in response to a cochlear implant activation video of an eight-month old boy from 2008, “Sallyallie89” commented: “What person would choose to be deaf? I bet if you ask this kid in 10 years if he is happy for what his parents did, he will tell you that he is extremely happy [...] Sorry, but if my kid is sick, I’m treating them. I’m the mother. It’s what parents do. Take care of your child.”

The question of whether we should preserve a culture at the expense of the individual–– and of scientific progress––is one that extends far beyond the Deaf community. The world is becoming increasingly monolingual. Ninety-four percent of the world’s population speaks only six percent of the world’s languages. It is estimated that by the year 2100, 90 percent of the world’s languages will cease to exist.¹⁴ While many members of linguistic minorities fear the loss of self-identity as their respective languages and cultures are assimilated by the mainstream, others argue that language death is inevitable and even creates new opportunities. In his controversial article “Let Them Die,” broadcaster and author Kenan Malik advocates for the existence of a universal language, claiming that “contact across barriers of language and culture allows us to expand our own horizons and become more universal in outlook.”¹⁵

According to bioethicist Wildes, “The controversies in bioethics illustrate the challenges of addressing moral issues in a morally pluralistic society.”¹⁶ We cannot categorize the perspectives on the cochlear implant controversy as ethically “right” or “wrong.” We can, however, accept moral ambiguity and cultivate open-mindedness and empathy.