How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
A few weeks ago, while in my office between lectures, a colleague appeared at my door. We’d never met before, and I no longer remember why she’d come, but in any case, once she saw the note on my door that informs visitors that I’m Deaf our conversation took a sharp detour.
“I have a deaf in-law!” said the stranger as I let her in. Sometimes, I dream up retorts to this kind of statement: Wow! Amazing! I have a blonde cousin! But usually I try to stay pleasant, say something noncommittal like “that’s nice.”
“He has two kids,” said the stranger. “They’re fine, though! They can hear.”
I dug my fingernails into my palm as I contemplated the stranger’s proclamation, her belief that her relative — and that I — were not fine. Later, as if realizing this might have been offensive, she backtracked to compliment me on “how well I spoke.”
When she finally left me — seething, embarrassed, and about to be late for my next class — I thought about what it meant to be ‘fine.’
Of course, I’m used to these kinds of insults.
People who have no experience with deafness often are the ones who feel freest to express their opinions about it: they tell me they’d die without music, or share the myriad ways they associate deafness with being unintelligent, ill, uneducated, poor, or unattractive.
But just because it happens a lot doesn’t mean it doesn’t hurt. And that day, it left me wondering how a well-educated fellow professor might come to have such a narrow understanding of the human experience.
Media depictions of deafness certainly don’t help. The New York Times published a panic-inducing article just last year, attributing numerous physical, mental, and even economic problems brought on by hearing loss.
My apparent fate as a Deaf person? Depression, dementia, above-average ER visits and hospitalizations, and higher medical bills — all to be suffered by the deaf and hard-of-hearing.
The problem is, presenting these issues as inextricable from being deaf or hard-of-hearing is a gross misunderstanding of both deafness and of the American healthcare system
Conflating correlation with causality fuels shame and worry, and fails to address the roots of the problems, inevitably leading patients and healthcare providers away from the most effective solutions.
As an example, deafness and conditions like depression and dementia can be linked, but the assumption that it’s caused by deafness is misleading at best.
Imagine an elderly person who has grown up hearing and now finds herself confused in conversation with family and friends. She can probably hear speech but not understand it — things are unclear, especially if there’s background noise like in a restaurant.
This is frustrating for both her and her friends, who constantly have to repeat themselves. As a result, the person begins to withdraw from social engagements. She feels isolated and depressed, and less human interaction means less mental exercise.
This scenario could certainly speed up the onset of dementia.
But there are also many Deaf people who don’t have this experience at all, giving us insight into what actually allows Deaf people to thrive
The American Deaf community — those of us who use ASL and identify culturally with Deafness — is an extremely socially-oriented group. (We use the capital D to mark the cultural distinction.)
These strong interpersonal ties help us navigate the threat of depression and anxiety caused by isolation from our non-signing family.
Cognitively, studies show those fluent in a signed language have
To say deafness, rather than ableism, is truly a threat to one’s well-being, is simply not reflective of the experiences of Deaf people.
But, of course, you’d have to speak with Deaf people (and truly listen) to understand that.
It’s time to look at the systemic issues that impact our well-being and quality of life — rather than assuming deafness itself is the problem
Issues like higher healthcare costs and our number of ER visits, when taken out of context, place the blame where it simply doesn’t belong.
Our current institutions render general care and technology like hearing aids inaccessible to many.
Rampant employment discrimination means many d/Deaf people have substandard health insurance, though even well-reputed insurance coverage often won’t cover hearing aids. Those who do get aids must pay thousands of dollars out of pocket — hence our higher healthcare costs.
Deaf people’s above-average visits to the ER are also no surprise when compared to any marginalized population. Disparities in American healthcare based on race, class, gender, and
Deaf people, and especially those at the intersection of these identities, face these barriers at all levels of healthcare access.
When a person’s hearing loss isn’t treated, or when providers fail to communicate effectively with us, confusion and misdiagnoses occur. And hospitals are notorious for not providing ASL interpreters though they’re required to by law.
Those elderly deaf and hard-of-hearing patients who do know about their hearing loss may not know how to advocate for an interpreter, live-captioner, or FM system.
Meanwhile, for culturally Deaf people, seeking medical attention often means wasting time defending our identity. When I go to the doctor, no matter what for, physicians, gynecologists, even dentists want to discuss my deafness rather than the reason for my visit.
It’s unsurprising, then, that d/Deaf and hard-of-hearing people report a higher level of mistrust in healthcare providers. This, combined with the economic factors, means many of us avoid going at all, end up in the ER only when symptoms become life-threatening, and endure repeated hospitalizations because doctors don’t listen to us.
And that’s the root of the problem, really: an unwillingness to center the experiences and voices of d/Deaf people
But, like discrimination against all marginalized patients, ensuring truly equitable access to healthcare would mean more than working at an individual level — for patients or providers.
Because while isolation for all people, deaf or hearing, can lead to depression and dementia in the elderly, it’s not a problem inherently worsened by deafness. Rather, it’s exacerbated by a system that isolates d/Deaf people.
That’s why ensuring our community can stay connected and communicate is so important.
Rather than tell those with hearing loss that they’re doomed to a life of loneliness and mental atrophy, we should be encouraging them to reach out to the Deaf community, and teaching hearing communities to prioritize accessibility.
For the late-deafened, this means providing hearing screenings and assistive technology like hearing aids, and facilitating communication with closed captions and community ASL classes.
If society stopped isolating elderly deaf and hard-of-hearing people, they’d be less isolated.
Maybe we can start by redefining what it means to be “fine,” and considering that the systems abled people have created — not deafness itself — are at the root of these issues.
The problem isn’t that we d/Deaf people can’t hear. It’s that doctors and communities don’t listen to us.
Real education — for everyone — about the discriminatory nature of our institutions, and about what it means to be d/Deaf, is our best chance at lasting solutions.
Sara Nović is the author of the novel “Girl at War” and the forthcoming nonfiction book “America is Immigrants,” both from Random House. She’s an assistant professor at Stockton University in New Jersey, and lives in Philadelphia. Find her on Twitter.