A Not-So Hidden Malady
“Blindness cuts you off from things. Deafness cuts you off from people.”
Writer Katherine Bouton was 30 years old when hearing in her left ear lessened. She did what most people would: she ignored it. Over the next 30 years, her hearing would progressively worsen. She got hearing aids, then a cochlear implant. By then her hearing had diminished to the point of functional deafness, forcing her to retire from her editorial position at The New York Times.
Bouton is not alone. Even pinning down a solid statistic for hearing-impaired adults in the United States is difficult. Why? Many are in denial. Others, like Bouton, fearing personal or professional ramifications, hide their hearing loss for as long as possible.
“The National Institute on Deafness and Other Communicative Disorders (NIDCD) states that 36 million people, or 17 percent of the population, report some degree of hearing loss…” Bouton goes on to cite a 2011 survey by Frank Lin of Johns Hopkins University. Lin’s findings report 48 million Americans with hearing loss.
Although hearing loss is commonly thought an affliction of the elderly, it’s far from limited to their demographic. Whatever the number, it cuts across age, economic class and gender lines.
By the time Bouton decided to write Shouting Won’t Help, she was angry, depressed, “stalled in her work”, and isolated from friends and family. She alludes to marital stress and drinking too much. She repeatedly mentions her despair over having to take early retirement from The New York Times: losing her work identity unmoored her. “...going deaf as an adult destroys your world, disables your life.”
I bring a lot of personal baggage to Shouting Won’t Help. My B.A. is in American Sign Language. For eight years I worked as an American Sign Language interpreter in the university setting. But my work was primarily with young adults fluent in Sign, fully-fledged members of the Deaf community. Although I interacted with a few adults who had lost their hearing later in life, I didn’t truly understand their challenges.
I also come from a family where adult-onset deafness is hereditary. I am warned I may lose my hearing, though it hasn’t happened yet. Several immediate family members are hearing-impaired.
More than any of the above, though, is my husband’s hearing loss. John also comes from a family experiencing hereditary hearing loss. I noticed he wasn’t hearing me about two years ago. My frustration eclipsed my professional training, my experience with my family, and my intellectual understanding. Repeating yourself three times in the line of work is part of work. Doing it at 6AM, or in throes of migraine, is something else.
I couldn’t always tell when John was just abstracted (this is a person whose first-grade teacher wrote on his report card “John is a dreamy child.”), did not hear me, or, in a new and enraging tactic, was ignoring me. There were some nasty arguments.
“What does the world sound like to you, anyway?” I asked. I have above-average hearing. “Whaa whaa whaa—” My husband answered, imitating the incomprehensible adults in the Peanuts cartoons.
Bouton’s experience of hearing loss drives Shouting Won’t Help, and it’s positively alarming. If this intelligent, highly educated woman, now working as a science writer struggled so, one shudders to think about what happens to those with fewer resources. There is some consolation: Bouton is involved with the Hearing Loss Association of America and the Associate of Late-Deafened Adults. Both organizations offer advocacy, education, and the companionship of fellow travelers.
Bouton makes a critical distinction between the capital “D” Deaf Community—the individuals I worked with as an ASL interpreter—and late-deafened adults. The Deaf Community are those individuals who use ASL and identify as Deaf; theirs is a vibrant community entirely dissociated from ideas of disability or affliction. (See “Abandoning the Ear? Punk and Deaf Convergences” Part I and Part II, “Call Me Uncontrollable: Deaf Muslim Filmmaker Sabina England” and Waiting to Be Heard: On Being Deaf and Gay.) Deafness and the use of American Sign Language are cultural markers. This community is not discussed in Shouting Won’t Help; Bouton is not part of it. She is a late-deafened adult who does not use ASL. Her hearing loss, which is sensorineural, idiopathic, and sudden, led her to the eventual use of a hearing aid in her right hear and an cochlear implant in her left.
Just managing the hearing aid, the cochlear implant, and all the equipment intended to make a hearing-impaired person’s life easier is a shockingly complex undertaking. Neither Bouton’s hearing aids nor the cochlear implant restore her hearing. Instead, they offer her noise, which she must work to interpret as meaningful sound. The cochlear implant proves particularly challenging: she receives it 30 years after losing the hearing in her left ear. The neural pathways have long since atrophied and Bouton must expend great effort for this surgically-implanted device to be worthwhile.
Then there is the matter of physically keeping it attached to her person. Scarves, wigs, tape, wires, and a host of uncomfortable mishaps later and wardrobe malfunctions transpire before Bouton arrives at a manageable arrangement. And losing any portion of the implant is more than a hassle: it’s expensive.
Other equipment—for the television or telephone—is riven with malapropisms. Those of use blessed with normal hearing find Siri’s mistakes in understanding a fount of hilarity. As a way of life they must be maddening. As for a group of humans in a room, with all their collective jabbering, mike systems are helpful—provided everyone remembers to speak in turn. Bouton describes a holiday dinner where she abandons communication, sitting back to bask in the good food and presence of family members.
Then there is the sheer difficulty of the technology: Bouton is a sophisticated juggler of computer, cellphone, Bluetooth, hearing aid, and cochlear implant. Given the effort required, those with less education or technological savvy would rapidly give up on “hearing”. And who could blame them?
If all this weren’t defeating enough, the costs are enormous. Hearing aids are crushingly expensive. Chapter 7 of Shouting Won’t Help is entitled “And The You Have to Pay For It”. Given the prohibitive costs of hearing aids, there are some snake-oil sellers out there. Caveat Emptor. Hearing loss is a highly personal, individualized necessity, requiring the care of trained professionals.
Each chapter concludes with “Voices”, vignettes from other late-deafened adults. Bouton clearly took pains to find a range of individuals here, all united by hearing loss, their stories are powerful without being saccharine.
Hearing loss, like all disabilities, has broad similarities and distinguishing characteristics. Bouton is unique in not being a natural lipreader or user of her cochlear implant. Nor is she a sunny personality: she emerges as a somewhat embittered woman who refuses to put a positive spin on severe hearing loss. Bouton clearly misses her work, resents the editor who forced her departure, and would prefer to hear. Her astringently honest voice is welcome, for if we must face the awfulness of hearing loss—and it is awful—let us face it with books like Shouting Won’t Help.
About a year ago, John saw an audiologist, who concurred he needed hearing aids. Our insurance deductible is $1,000 per year.
Like many Americans, John has not yet filled his prescription.In fairness, he has very good mitigating reasons not discussed here.
According to Shouting Won’t Help, which I have encouraged John to read, the mean time between receiving a prescription for hearing aids in the United States and filling it is seven years. He promises me he won’t wait that long.
I thank him for allowing me to share our story here. I do so because we are not alone.