970x125
Illustration: Xiaohua Yang/The GuardianAt the end of my second American Sign Language (ASL) class, during which I had fingerspelled my name Deborah as “F-E-B-O-R-A-H”, I thought it prudent to type a question into my Notes app rather than trying to fingerspell it. “How do I sign, ‘I’m hearing impaired?’” I wrote, showing the typed sentence to my teacher, Courtney Rodriguez. Then I pointed to one of my hearing aids.Sixty percent of ASL, Courtney had just taught us, consists of non-manual markers, meaning most of the communication in ASL comes from facial expressions. Puffed cheeks, for example, indicates something big. Pursed lips means small. From the puffed cheeks and pained look on my deaf teacher’s face, I could sense I had hit a big nerve.Courtney wrote the phrase “hearing impaired” on a whiteboard then crossed it out. “No,” she signed. Then she replaced my self-descriptor with the correct ASL term, “hard of hearing”, and signed it by tapping two fingerspelled “H”’s in front of her, as if hitting two adjacent bongos: “H … H. Hard of hearing.”“Ahh”, I said out loud, “hard of hearing. Got it.”My voice was the only sound in the Sign Language Center in New York, where three semicircles of students had just spent two hours learning three different levels of ASL in one cramped classroom. (When teachers do not vocalize their lessons, they do not need separate classrooms.)This change in perspective, after four years spent living in semi-silence and shame, felt like both a revelation and an imperative. The word “impaired” implies a judgment about the functionality of my ears and me, meaning I saw myself as the broken one, not society’s lack of accessibility or accommodations for people like me.Instead, I realized, I needed to start thinking of myself as hard of hearing, which is a neutral statement of fact: I am unable to understand human speech without amplification. It’s our society that is impaired by placing multiple hurdles between me and my ability to communicate.Until that morning four years ago, when I lost my hearing, I rarely thought about how people who can’t hear communicate with those who can. But then, in early July 2022, during a bout of Covid, I woke up, turned on the shower to heat up the water, started brushing my teeth, and grew confused. Had I forgotten to turn on the shower? I looked behind me. Water was definitely coming out full force from the showerhead. So why couldn’t hear it hitting the tiles?I banged my toothbrush on the bathroom sink. Nothing. I banged my knuckles against the glass door of the shower. Nothing. In the place of normal ambient sound, I heard only a constant high-pitched tone of tinnitus in my left ear, a continuous, maddening hiss that has remained constant to this day.Starting to panic, I stepped out on to my balcony to see if I could hear the normally cacophonous chirp-chirping of summer birdsong, the honking of cars, the squeals of children in the playground across the street.Nothing. Nothing. More nothing. A helicopter passed overhead in absolute silence. I started to cry.Overnight, at age 56, I became one of the approximately 13% of formerly hearing adults in the US who now report some level of acquired or sensorineural hearing loss, whether through age, noise exposure or illness.double quotation markHow would I – a single mother of three … with zero wriggle room in her already tight budget – communicate with other humans?I had already lost some range of hearing while working as a photojournalist in the late 1980s, after an IED in Afghanistan exploded close enough to my face that I was blown backwards by the blast wind. But this led only to a mild loss of hearing, and it didn’t keep me from living and conversing as a hearing person. Inflammation from my Covid infection, however, sealed my Eustachian tubes shut and destroyed sensitive hair cells in my cochlea: a double whammy of both conductive hearing loss (what many of us experience when we have wax buildup in our ears, swimmers ear, or can’t pop our ears on a plane) and sudden sensorineural hearing loss (the forever kind of loss) that was immediately followed by an emergency prescription for a steroid to save whatever hearing might remain.Then I was hit by another double whammy, one that is unique to our for-profit healthcare system. First, UnitedHealthcare refused to cover the pair of $7,000 hearing aids I was told I needed to hear more clearly. I ended up paying $2,699.99 out of pocket for a clunky and less effective pair at Costco. The second whammy was when United denied authorization of the balloon Eustachian tube dilation surgery I needed to reverse my conductive hearing loss, claiming it was “not medically necessary”.They waited until three minutes before my surgery was scheduled to begin to deny coverage, after weeks of obfuscation, unanswered messages, and delay. Meaning, my surgeon was already scrubbed in, and the line for anesthesia was already in my arm at the time of United’s denial. (When I contacted UnitedHealthcare for comment, they did not respond.)I walked out of the hospital, shaking, still deaf and devastated. If my health insurance would cover neither the cost of the surgery nor the cost of more sophisticated hearing aids, how would I – a single mother of three back then, with zero wriggle room in her already tight budget – communicate with other humans?I had not grown up deaf, so I did not have my own deaf community to lean on, plus I didn’t know sign language. My hearing friends communicate through sound and speech. How would I catch up with old friends, conduct interviews as a journalist, converse with my children, or even pick up the phone to try to convince UnitedHealthcare of the inequities of their denials?This is how I found myself, in my mid-50s, in the same silent quandary in which one-third of Americans who are 65 and older and one-half of Americans who are older than 75 now find themselves.Unlike in the UK, Australia, and most countries in Europe, where hearing aids are fully covered, the US has no federal mandate for hearing aid coverage. Over-the-counter hearing aids have finally become available for those with mild-to-moderate hearing loss, thanks to the much delayed Over-the-Counter Hearing Aid Act, but I bought and tried a pair, and they were inadequate to treat my level of hearing loss. Captioning glasses have recently appeared on the scene, but they’re also expensive and uncovered, and they still haven’t solved the problem of eliminating background chatter in restaurants and parties.This leaves late-in-life, hard-of-hearing Americans like me in an unsettling and socially isolating catch-22: we can’t communicate with the deaf, we can’t communicate with the hearing. This isolation not only puts us at a 71% greater risk of dementia, but also it has now become clear that being fitted with appropriate hearing aids, as soon as hearing declines, cuts the risk for dementia nearly in half. (Of course, the cost of Alzheimer’s caregiving in our country falls solely on the shoulders of those who get it. I guess I can understand why insurance companies don’t actually care if we can’t hear. We become someone else’s financial burden once our hearing loss leads to dementia: our family’s.)My surgeon and I appealed United’s ruling twice and lost. They called the surgery experimental. (It is not.) They once again claimed opening up my Eustachian tubes was “not medically necessary”. Over the next year and three months, my Eustachian tubes remained glued shut, and my hearing further deteriorated. I began to self-isolate, making excuses not to see friends, not to meet colleagues, not to attend parties. I was, to say the least, profoundly lonely.In consultation with my surgeon, I decided to choose a different insurance provider, Fidelis, hoping they might approve both relief from the constant pain, discomfort, and silence of my closed Eustachian tubes as well as a new pair of hearing aids. Yes, their rep said, Fidelis would cover both a better pair of hearing aids and my surgery.double quotation markDeafness is and has always been a not unsolvable problem of communication. We just choose, every day, not to solve itHallelujah! These two accommodations were life altering. I planned walks with friends. I threw dinner parties at home where I could control the ambient noise. I even agreed to a blind date with a friend of a friend and fell madly in love.This man is patient with my constant requests to repeat what he said; with my inability to hear our alarm clock; with my frequent misunderstandings. (“Don’t hold back,” he once said, to which I answered: “Who’s Donald Beck?”) Another time I thought he was talking about a Spandex memoir. It was a memoir by John Steinbeck. My partner’s wife, who lives with us, has been living with early onset Alzheimer’s for more than a decade. So we both witness, every day, its painful reality. It was his idea, in fact, to take ASL classes together.Hopefully our communication will get less wonky as we acquire more sign language and as hearing aid technology improves. A few weeks ago, I tried on the new Fortell hearing aids, which harness AI to discriminate between human voices and background noise.Hearing with them was definitely a giant leap forward in both sound quality and voice isolation, but at $6,800 a pop, uncovered by insurance, they remain out of my budget. Ironically, Anthropic, a less ethical AI company, now owes me approximately $12,000 – part of a $1.5bn settlement in connection with a massive copyright infringement lawsuit – after it downloaded four of my books from a pirated library without my permission. If I ever get that settlement, I’ll use it to buy the hearing aids made by the company using AI for good.Of course, I shouldn’t ever have to choose between paying rent or hearing well. And the deaf should not have to feel isolated in their own ASL bubble either. Deafness is and has always been a not unsolvable problem of communication. We just choose, every day, not to solve it.Integration between those who can hear and those who can’t is proveably possible. Martha’s Vineyard had a fully integrated deaf and hearing population for two centuries, thanks to the high percentage of its citizens who were born with hereditary deafness on a small island reachable only by boat. Because of this, nearly everyone on the island learned and signed in MVSL (Martha’s Vineyard Sign Language).We, too, could easily all learn ASL by teaching it early, when children are sponges. It’s not only a beautiful language, it is filled with wisdom and insight. Pronouns, for example, are not gendered. “He/she”? Both the same. “Him/her”? Ditto. The sign for “divorce” is just a tossing away of the sign for “marriage”. “Widow” is the sign for “love” followed by the sign for “lost”.We could also easily pass a federal law mandating that all hearing aids be covered by insurance; that veterans with war-related hearing loss have timely access to audiologists at the VA; that Medicare cover the costs of age-related hearing loss. We could eliminate the unhealthy incentives of a for-profit healthcare system that dismisses the needs of the 48 million of us who are either deaf or hard of hearing. We could invest in cutting-edge new technologies that harness AI for good. We could mandate that all movie screenings, not just a select few, are open captioned.Most important of all? We could all do our part, whenever possible, to bridge the deaf-hearing divide.Recently, I went to buy salmon at my local grocery store. The fishmonger there is deaf, so normally I would have written my order on the dry-erase board he hands out to customers. But after just four, two-hour ASL lessons, I no longer needed his board. “I want three pieces of salmon, please,” I signed, fingerspelling “salmon”. The fishmonger understood which fish before I even got to the letter “M”.Smiling, surprised, he signed: “How big?”“Medium”, I signed, neither pursing my lips nor puffing out my cheeks.“Understood”, he signed. “Thank you.”“Thank you,” I signed back, with the added gestural emphasis of using both hands instead of just one. Then – I couldn’t help myself – I signed: “I’m learning ASL!”“I see,” he signed back, his eyebrows raised wryly. Then he winked, packed up my fish, and handed his dry-erase board to the next person in line.
970x125
970x125
