Opinion

Don’t Fear a Deafer Planet

In Deaf culture, we have a rich storytelling tradition, including a stable of myths passed down through generations of deaf people. One of these stories is about a planet called “Eyeth,” a utopic world where deaf people communicate freely and live without stigma. Rather than the audio-centric societies that dominate Earth, Eyeth centers the eye. In some tellings everyone on the planet is deaf; in others, the society is designed around visual communication and signed language, and everyone signs regardless of hearing status.

Back here on Earth, most deaf and hard-of-hearing people know how very far away the dream of an unstigmatized existence really is. In the United States, deaf people experience inequitable access to the justice, health care and education systems, increased incidences of employment discrimination and police violence and higher levels of sexual-based violence than their hearing peers.

While some of the discrimination we face comes from a place of ill intent, I’m willing to wager that most of it comes from ignorance and inexperience. According to the 2011 American Community Survey, about 3.6 percent of the United States population is deaf or experiencing severe hearing loss, meaning many average-hearing people have never had a meaningful relationship with a deaf person. Worldwide, the World Health Organization estimates that more than 5 percent of the global population has “disabling” hearing loss, still a relatively small number. Without that personal connection, deafness remains amorphous, inscrutable, even scary.

But what if the population of deaf and hard-of-hearing people were to grow?

In March 2021, the World Health Organization released a report predicting that unless measures like increased access to health care and noise protection are enacted, 2.5 billion people worldwide, or one in four people on Earth, will have some degree of hearing loss by 2050. Nearly 700 million of them willexperience hearing loss ranging from moderate to profound, a 63 percent increase from today’s numbers.

An uptick in global noise pollution and unsafe listening practices, childhood disease resurgences because of vaccine hesitancy or limited international availability, the use of ototoxic antibiotics and a lack of preventive ear and hearing care and hearing care specialists worldwide are some of the main causes of hearing loss cited in the W.H.O.’s report.

Reports of hearing loss linked to Covid-19 infection have also been documented, though the data sets are small. Still, one thing is clear: The future of humanity is about to get a lot deafer.

No doubt many people learning this news will want to know how to “fix” it — with a technological or scientific advance, or “cure,” that will stop the coming of this deafer world. And while assistive technologies like hearing aids and cochlear implants are powerful, often transformative forces in the lives of deaf and hard-of-hearing people, they may not be the most effective way to reckon with widespread hearing loss of varying degrees. Rather than a purely curative focus, we should be attempting to eradicate the stigma that surrounds hearing loss.

A societywide attitudinal shift like this is certainly ambitious. But we have a sort of blueprint for a successful deaf-hearing integrated society, an Eyeth right here on Earth: community built in the 18th and 19th centuries on Martha’s Vineyard.

In the late 1600s, a deaf carpenter named Jonathan Lambert and his wife, Elizabeth, landed on Martha’s Vineyard as part of a subset of colonists from Massachusetts Bay. Many of them shared ancestry tracing back to Kent, England, and this, combined with the difficulty of the journey from the island to mainland, meant very little genetic diversity was introduced there for nearly a century. The result was a high incidence of hereditary deafness: while roughly 1 in 5,700 Americans at the time were deaf, on the Vineyard it was 1 in 155. A sign language developed on the island. It was known as Chilmark Sign (named after a town on the island), and later called Martha’s Vineyard Sign Language (M.V.S.L.). It was used by both deaf and hearing islanders, allowing for fully integrated work, worship and social interactions. Hearing people sometimes signed without deaf people around, and some islanders reported not being able to remember who was deaf or who was hearing.

The deaf population on Martha’s Vineyard peaked in the 1850s, but increased travel ability made it easier for people to come and go, introducing genetic diversity to the island population. Meanwhile, on the mainland, the American School for the Deaf in Hartford, Connecticut, founded in 1817, drew increasing numbers of deaf students, teachers and community members into its orbit. M.V.S.L. was either absorbed or overtaken by the American Sign Language (ASL) forming at the deaf school, and by 1952, M.V.S.L. was considered extinct.

The lesson from Martha’s Vineyard is simple: When society doesn’t make deafness a barrier, it isn’t one. And all this was done with a 0.65 percent deaf population — imagine the profound changes that an integration of a deaf or hard-of-hearing population as large as 25 percent might make.

Today’s world isn’t ready for a deaf future, but it can be. Rather than an approach that’s reactive and narrow — like CRISPR-editing hereditary deaf people out of the genome, or heaping on retroactive accommodations designed to maintain the status quo — we can take a proactive, cultural approach that incorporates universal design, dismantles structural barriers and includes deaf people from the ground up.

As on Martha’s Vineyard, an inclusive future requires community cooperation. Ideally, this would mean hearing people learning the signed language of their local Deaf community (ASL in North America). Unfortunately, the hearing world tends to resist learning to sign.

Part of this is because of misinformation that learning to sign will delay speech, and in other cases, it’s the result of a dearth of resources, particularly for working families or in rural areas. Making ASL classes and materials widely available, and integrating ASL into the public education curriculums and early childhood settings would support deaf and hard-of-hearing people and their families.

But if teaching the world to sign isn’t feasible, we can still learn from the Vineyard signers by applying their overall mind-set recognizing deaf and hard-of-hearing people as equal citizens who deserve to live alongside hearing ones.

Consider, for example, subtitles. Closed captioning is an inexpensive and widely available technology. Since listening and speech-reading is largely dependent on context and atmospheric conditions — for example, whether there is background noise — even those of the projected 2.5 billion people experiencing mild degrees of hearing loss are likely to benefit from captioned material. Still, content on many websites, video applications and social media platforms remains uncaptioned. Even theaters often choose to forgo open captions, instead employing retrofitted “solutions” that overcomplicate and underperform.

At many movie theaters today, if closed captions are available at all, they are played in reverse across the back wall of the theater, written in little LED dots; deaf viewers are given pieces of plexiglass and must try to capture their reflection in order to access the film. While technically an accommodation that satisfies the requirements of the Americans With Disabilities Act, it doesn’t work well, and the device causes the user to literally stick out in a crowd, reinforcing the stigma of deaf people as strange or different.

If captions were simply played on the big screen, everyone could enjoy the film together. But, because many hearing people dislike the aesthetic, and have likely never considered that deaf people live in their community and enjoy watching movies, society chooses to prioritize the unadulterated pleasure of certain viewers over accessibility for all.

A movie theater is a single, low-stakes example of the many barriers a deaf person faces every day, but it’s indicative of the way a slight tweak of society’s attitude could have a huge impact on the lives of many. Rather than make access all about hearing people’s desire to avoid acknowledging their own discomfort with deafness, society could choose to reckon with the stigma it’s built.

You needn’t come all the way to Eyeth; simple interactions with deaf people here on Earth will reveal the truth of deafness as just another way of being human. As deafness is normalized, it will be easy to remember to save us seats at the tables at which you organize your events or draw up building plans for your theaters, so we can offer a fresh perspective on what works best, for all of us. One in four future readers may be grateful.

Sara Novic is a writer and instructor of deaf studies at Stockton University in New Jersey. She is the author of two novels, “Girl at War” and the forthcoming “True Biz,” which explores the lives of a group of students and the headmistress at a school for the deaf. She lives in Philadelphia.


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