Gustav Klim via Flickr

When I was in college I met a man who was trying to erase me. He was a scientist and a visiting professor at my school, teaching a class called Audiology. I was the co-president of the sign language club and had heard about the course from a few of the other members; many of them were studying to become Speech-Language Pathologists. I signed up, too, wanting to see what the professor might have to say about me.

He spoke mainly of my insides, the broken bits—the cochlea, its basilar membrane and tympanic canal. We learned about the function of each part and every possibility for dysfunction; we memorized terminology down to the cellular level. I tried not to be offended by the way he reduced deafness to a medical defect, how he’d produced a biological vacuum where the trait of deafness was detached from actual Deaf human experience. We never talked about how many Deaf people, myself included, liked being Deaf, liked the close-knit community, the culture and vivid three-dimensional language deafness affords us. Still I tried to give him the benefit of the doubt; it was a science class, after all.

Then he spoke of the cure. His research team across the river at a Harvard lab was working toward the stem cell-based creation of cochlear cells to cure deafness. Far beyond the capacity of aids or implants, a stem cell treatment would be organic, and totally regenerative. If and when it worked, it would be like the person had never been deaf at all.

The professor and the students in the class were intelligent and liberal-minded, some of whom I counted as friends. But my identity was their pathology, and their idea of scientific progress, of a better society, lay in the eradication of people like me. How the removal of Deaf bodies from the human genome would necessarily lead to the extinction of our folk tales, our jokes and word play, our poetry, was another thing the professor never addressed.

I don’t know why, but instead of running from the scene I glommed onto this professor. Maybe it was a kind of rubbernecking. Perhaps part of me wanted to keep an eye on him. Whatever it was, I proposed an independent study about his research. I went to his lab and watched them deafen the mice. I stood before the centrifuges where assistants readied samples to grow in petri dishes. The professor did not have to take me on; he was kind and patient with me, a student with little foundation in scientific study. It came out over these sessions that he had Deaf grandparents and knew some sign language.

“But what will happen to Deaf culture if your research works?” I garnered the courage to ask him once.

“Some people would still raise their children Deaf,” he replied. “It would still be a choice.”

* * *

In a vacuum, yes—it’s unlikely the US government would legislate mandatory medical treatment of deaf people. But in reality, the choice is more of the Hobson variety; even without my professor’s treatment, Deaf culture is already endangered, the result of a centuries-long tradition of stigma and oppression against deafness and sign language.

Today’s deaf babies are born into an immediate declaration of their brokenness. Many mothers are informed of their babies’ “defects” only hours after giving birth: your child has failed the universal newborn hearing screening, but don’t worry; we can fix it. Cochlear implants, medical devices inserted into deaf people’s skulls, simulate hearing by sending electric impulses to the auditory nerve. Doctors recommend the earliest possible implantation so the brain can learn how to interpret sound. Doctors also recommend aggressive oral-only education to be sure that deaf children are fully dependent on the implant. Bilingualism from the medical viewpoint is a fallback, a distraction from the goal: English speaking. Normalcy. The ability to pass.

It’s unsurprising that parents living in a society steeped in this stigma, many of whom have never met an actual Deaf person, take doctors’ recommendations at their word. But cochlear implants fall far short of replicating natural hearing. Some implants work well, and recipients learn to speak and communicate the way the hearing world deems correct. Other implants do not work, or recipients do not succeed at performing hearingness so seamlessly—here, without a full grasp of English, and having been deprived of American Sign Language (ASL), they are destined to live a life half-languaged.

Born on American soil and completely untethered to a spoken language, ASL is a much more “American” language than traditional English.

America’s fear of difference is particularly visible in the current political landscape, but it has long been woven into the country’s cultural values. A deep-seated disdain for multiculturalism—and multilingualism—is historically evident in the ruthless genocide of American Indians, in the whitewashing of immigrants’ names at Ellis Island, and today in the vitriolic demands that immigrants “just speak English,” in the expectation that national languages be bulldozed such that English be available to us at all times, even abroad.

The history of ASL already places it at odds with the way many understand their “Americanness.” ASL’s primary ancestor is Martha’s Vineyard Sign Language (MVSL), borne out of a high incidence of hereditary deafness on the island in the 18th century. At the deaf population’s peak in 1854, one in 155 people were deaf (as opposed to a national average of one in 5728). Martha’s Vineyard is one of a few known communities of high-rate genetic deafness in which all members knew sign language. Hearing people were even known to sign to one another without deaf people present. MVSL, influenced by French Sign Language when Deaf Frenchman Laurent Clerc co-founded America’s first school for the Deaf, became the standard American Sign Language we use today. No savior narrative can be extracted; no hearing person gifted language, or schools, to America’s deaf people. Born on American soil and completely untethered to a spoken language, ASL is a much more “American” language than older forms of English. And, as America treats all its indigenous cultures, it has been consistently marked for extinction.

Alexander Graham Bell led the charge against Deaf people and sign language at the time, outlining plans for eradication in his speech “Upon the Formation of a Deaf Variety of the Human Race.” A prominent eugenicist, he fought to prevent Deaf people from marrying and propagating a “defective race of human beings.” Though his theory about the genetic transmission of deafness was wrong—only ten percent of deaf people have deaf children—his understanding of cultural transmission was better-founded. Disturbed by the socialization among Deaf people, their creation of clubs and communities, Bell advocated that the deaf should be educated orally, taught to speak and lipread, to ensure successful integration into society. Sign language, he thought, inhibited these goals. For decades after, deaf children’s hands were tied to their desks to prevent them from signing. And while tying up students is no longer considered good practice, the Alexander Graham Bell Association remains a prominent American “hearing loss resource center,” that continues to advocate for oral-only education, pushing the same outdated notion that bilingualism is in some way harmful to a deaf child’s development.

Though Bell’s ideas about education don’t stand up to actual scientific evidence, they are still upheld by today’s system. As decreed by the US Department of Education, the goal for students with disabilities is that they be placed in the “Least Restrictive Environment” (LRE), mainstreamed into regular education classrooms, unless their disability is too “severe” for them to be circulated in gen pop. Deaf schools are framed as places of segregation and failure. This definition of “restrictive” also completely ignores a holistic understanding of a deaf child as a human. What if a deaf school, where children can communicate with their teachers, and perhaps even more importantly, their peers, without assistive technology or an interpreter is the less restrictive of the two? Deaf actor and advocate Tyrone Giordano often speaks about the topic, saying it’s a mistake to view Deaf schools as segregated, though they become that way when the educational system uses them as “dumping grounds” for the failures of mainstreaming. Deaf schools, he says, should instead be understood as “bilingual institutions where ASL and English are used every day, in all sorts of contexts.” Giordano’s involvement in the First Folio project at Gallaudet University exemplifies the success of this model—the exhibition will feature a synthesis of ASL and Shakespearian English.

But Gallaudet, America’s only university exclusively for the Deaf, is more the exception in today’s educational scene. The question, Giordano says, is “are we trying to build a homogenous society a la the melting pot concept, or are we trying to honor the multiplicity of societies within greater society? The melting pot idea is actually quite harmful, because if you take the analogy a little further, if you stop applying the heat, what happens? There will naturally be separation, and some will rise to the top while others sink to the bottom.”

The fact that deafness is not inherently debilitating, that it has no bearing on one’s intellect or ability to function in daily life, is evident in communities like the historical Martha’s Vineyard, or today among the al-Sayyid Bedouin tribe in Israel. Four percent of al-Sayyid’s population is deaf, but everyone knows sign language so everyone has equal access to society. When the majority culture doesn’t view deafness as a disability, it isn’t.

Almost all the negative impacts of deafness in America, then, are rooted in the cultural misunderstanding that spoken English is dominant due to its intrinsic superiority, rather than the result of the genetic lottery that makes hearing people the majority. Indeed, this mindset broaches more territory than the Deaf world; the concern over English’s dominance is a pressing one for language preservationists and language rights activists globally. Japanese novelist Minae Mizumura speaks to the phenomenon in The Fall of Language in the Age of English, saying: “the rest of the world would appreciate it if [native English speakers] would at least be aware of their privileged position—and more important, be aware that the privilege is unwarranted.” English, she says is an “accidental universal language.”

Mizumura concludes her book by imploring Japanese people to read and write Japanese literature, and the Deaf community has responded to its own position similarly, with an explosion of Deaf art and theater. 2015 was a banner year for Deaf-made art. Deaf artist Christine Sun Kim rose to TedTalk prominence presenting on her work in visual and sound art; Deaf West’s ASL/English revival of Spring Awakening was a Broadway hit, garnering rave reviews from nearly every major media outlet.

Scholarly interest in sign language has skyrocketed over the past decade; a Modern Language Association report has it dethroning German for the slot of third-most studied language for foreign language credit, to say nothing of the recent baby sign language craze.

These positive responses to displays of Deaf culture at first seem a heartening divergence from America’s eugenicist past; however, closer examination reveals that hearing people’s move toward ASL is largely an appropriative one. Not unlike Miley’s twerk or Urban Outfitters’ fake “Navajo collection,” sign language is deemed permissible by hearing people in certain contexts—mainly for aesthetic or artistic benefit, and when it’s made accessible. Staged musicals and signed music video soundtracks keep listeners abreast of what’s being said; ASL classes are designed for hearing consumers.

The evidence for this appropriation lies not in hearing people’s praise of Deaf art so much as it does in their co-opting it for their own purposes. Scholarly interest in sign language has skyrocketed over the past decade; a Modern Language Association report has it dethroning German for the slot of third-most studied language for foreign language credit, to say nothing of the recent baby sign language craze. Deaf people have also appeared in recent hearing-made art, notably the Ukrainian Sign Language film The Tribe, which took the festival circuit by storm. Even ABC Family has gotten the ASL bandwagon—in its aptly titled drama Switched at Birth, one of the birth-switched protagonists is deaf. But the hearing director of The Tribe has shown himself to have little understanding of Deaf culture beyond its aesthetic appeal, in some interviews referring to Ukrainian Sign Language as “international sign,” and Switched at Birth can’t resist the high-drama of forbidden, (and schmaltzy) deaf/hearing romances. Instead of reflecting authentic Deaf experiences, hearing people use bits and pieces of Deaf culture to tighten their grip on the cultural narratives of deafness and disability.

No one seems able to scientifically explain why ASL is detrimental to deaf children, but great for the brain development of hearing babies born to yuppies.

To that end, sign language and Deaf people are also welcome in the mainstream as inspiration porn. Videos of deaf children who are cured with implants and “are hearing their mothers’ voices for the first time!” or clips in which a hearing person come to the aid of a poor, disenfranchised disabled one, routinely go viral—they serve as a way for hearing people to interact with people with disabilities while simultaneously reinforcing dominant power structures.

Sign language is also appropriate when a gorilla is doing it.

No one seems able to scientifically explain why ASL is detrimental to deaf children, but great for the brain development of hearing babies born to yuppies. This is because the answer lies not in scientific fact but in an insidious feat of cultural control. ASL is held up as artistic spectacle, or literally infantilized as the language of babies and primates, but Deaf schools—the cultural centers for the Deaf community—are closed, and native ASL-users are encouraged to seek treatment and abandon sign for spoken language.

Hearing people continue to enjoy the fruits of Deaf culture while actively eroding the infrastructure that supports the futures of Deaf people. Without Deaf schools, sign language users will continue to dwindle or exist in isolation; in either situation the creation of Deaf art will become increasingly difficult. A language cannot endure without native speakers to engage in language play and evolve it, so despite hearing students’ increased study, the future of ASL as a viable, living language remains imperiled.

What can be done to avoid our extinction? Giordano, referring back to the “melting pot” scenario, suggests we aim instead for a “‘salad bowl’ […] cultural mosaic, where differences are celebrated parts of the whole.” “Salads,” he quips, “are healthier for you anyway, and can be damn delicious.” But fostering a genuine respect and desire for cultural and linguistic multiplicity is not only a tall order, but a race against the clock.

For my part, I stay up late googling my professor. A YouTube video provides—from what I can tell; it isn’t captioned—an overview of his research protocols. Filled with dread, I scan the remaining search results for evidence of a breakthrough, but I don’t find anything, not yet.

The professor, smart and well-intentioned, is for me the embodiment of cognitive dissonance: I have never before met a person I’ve both liked and so desperately wished failure upon. I think of his answer, that his research simply provides a choice. But the American people are making the decision already—with their hearts and minds, with their votes and tax dollars.

Will the government pass a law that Deaf people must be treated with stem cells when the time comes? Probably not. But will they cease support to resources until Deaf people are defunded into a corner? They already are. Perhaps the treatment will be pushed through the judiciary system—as early as 2002, a Deaf mother’s refusal to give her child a cochlear implant was brought before a Wyoming family court as evidence of child neglect.

More likely, though, it will be quieter. The same misinformation leveled against Deaf people for centuries will continue to be used by educators to close Deaf schools and instill fear in hearing parents, and by scientists to pursue projects with complete detachment from their ethical implications. Unless we actively work to restore value to culture over convenience, Deaf people and American Sign Language will be but two of many casualties in the wake of an all-powerful monoculture. I only hope I won’t be around to see this kind of progress achieved.

Sara Nović

Sara Nović is the author of the novel Girl at War (Random House, 2015), which won the American Library Association Alex Award, was an LA Times book prize finalist, and was longlisted for the Baileys Prize for Women’s Fiction. America is Immigrants, nonfiction about notable Americans hailing from across the globe, is forthcoming from Random House in 2019.

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