Silent Epidemic: An Interview with Katherine Bouton

Hearing aids have long been one of our running jokes about aging, an easy target stuck to the backs of every random AARP member. But millions of Americans who aren’t anywhere near retirement also suffer from hearing loss —  and most don’t do anything about it. Nearly 20 percent of Americans between 12 and 64 have some version of it — and many of them don’t use hearing aids or cochlear implants. Only one in five people who could benefit from a hearing aid actually wears one.

Katherine Bouton, the author of the recently published Shouting Won’t Help: Why I — And 50 Million Other Americans — Can’t Hear You, was once one of those people. She lost the hearing in her left ear when she was 30 and the other ear slowly followed, but she wouldn’t get herself hearing aids for another two decades. That proved a big problem for a senior editor at The New York Times, where she spent 22 years essentially hiding her loss while performing such tasks as overseeing daily theater and books coverage.

Now she’s got a cochlear implant in one ear and a hearing aid in the other and a new, fascinating book that tells the story of her loss and many others while also getting the lowdown on what research is in progress to help eradicate the problem. Shouting Won’t Help could serve as a primer for dealing with adult-onset hearing loss. Bouton runs through the mental difficulties of the muted life and provides a window into the world of live television captioning (“Knelt unyahu” for “Netanyahu”) and rock bands’ and sports arenas’ never-ending quest to be the loudest in the world. From her home in Manhattan, Katherine Bouton spoke with us via email about her new book and what it’s like to live in a half-heard world. — Mark J. Miller

 

The Barnes & Noble Review: What was it like to be one of the main arbiters of what was important in New York theater and culture when you couldn’t hear the shows? How difficult a burden was that?

Katherine Bouton: I wasn’t arbiter of what was important in theater. The theater critics — Ben Brantley and Charles Isherwood, the first- and second-string critics — decided what they would review and wrote their reviews without consultation with me. I never edited their opinions, only their prose (and generally not even that — they’re both pros). Virtually everything on or off Broadway is reviewed on opening night. Off-Off Broadway shows were reviewed by others on staff who do theater reviews, among other jobs. Mostly these were assigned based on the track record of the director or playwright or the theater company. I could never have been a critic with my hearing loss. But as an editor, I merely missed the full enjoyment of the experience. I could still edit and assign. I could also, of course, appreciate design and lighting and costumes, and acting; even if I didn’t always get the words, I saw how the actors moved and looked and interacted with one another, and how they interpreted the character. The same with direction — I could see the director’s interpretation of the play. One trick I had for making the theater more enjoyable was to read a play both before and after I saw the production. If it was a new play, the publicist would generally give me a script. If it was a revival, I’d buy the play at the bookstore. I came to love reading plays — and I still do it, just for pleasure. So often the playwright’s intentions get lost in the distractions of the acting or the production. 

BNR: Acting, as you note in the book, is something the hearing impaired are very familiar with. You write a lot about “faking it” so others wouldn’t figure out that you had any hearing issue. Have you discovered since you have been more open about your hearing loss that there are fewer mix-ups? And have you found out later that any of your “faking it” wasn’t actually working quite as well as you had thought?

KB: Absolutely. I did manage to fool a lot of people. Even my best friends didn’t know the extent of my hearing loss. But it was definitely not actually working as well as I thought, and I lost my job in part because of that secrecy. In retrospect, I realize that I was doing far greater damage to my image by faking it than I would have by simply explaining my hearing loss. People are afraid of being seen as old or stupid if they admit to hearing loss. But the truth is that they seem old or stupid if they don’t acknowledge it — or aloof, or not interested in their job or in what their friends are saying. 

BNR: But what about the actual act of reporting? How has having a hearing loss changed the way you go about reporting?

KB: The main issue is how I do interviews. I can’t do phone interviews so I find myself flying or driving all over the place to do interviews in person, face to face. I sometimes also do email interviews. In face-to-face interviews, I use a tape recorder so that I can really focus on what the interviewee is saying. I think I listen much more carefully and I find that I ask more follow-up questions than I used to. When I leave an interview, I’m often not sure what was said. But when the transcriber sends back the transcript of the interview, there it all is. It’s fascinating to hear myself ask questions and hear answers that I have no recall of. That’s because, I’m using up so much brainpower simply hearing and processing what I hear that there’s no cognitive room left for remembering it, hence the need for the tape recorder. I also think hearing loss has made me more creative and productive as a writer. I can’t hear radio or my iPod or books on tape, so when I walk or work out at the gym, I’m thinking. When I drive, I’m thinking. Sometimes I tackle a specific problem but mostly it’s just floating free-association. A lot of good ideas pop into my head. I also don’t go to movies (unless they have subtitles) or theater (unless it’s captioned) or to hear music, and I watch very little television, so I have a lot of time for reading and writing and reflection. 

BNR: You wear a hearing aid in one ear and a cochlear implant in the other. More and more deaf and hearing-impaired people are turning to implants to help rectify their hearing at younger and younger ages. Do you feel that cochlear implants are also reaching a higher level of cultural acceptance and have less of a social taboo than hearing aids?

KB: There’s a great deal of misunderstanding about cochlear implants. They are wonderful for people who have lost all their hearing, but they are a last resort. Far fewer people wear — or need to wear — cochlear implants than hearing aids. Some think that cochlear implants are just a better hearing aid, but that’s not true. A cochlear implant is meant only for someone with profound hearing loss. Natural hearing, even amplified by a hearing aid, is always preferable. The sound quality provided by an implant is quite different from the sound quality with a hearing aid, which amplifies natural sound. A cochlear implant delivers information to the brain digitally, and the wearer has to learn how to recognize these digitally generated sounds as speech. Cochlear implants are very expensive, usually at least $70,000. Although private insurance, most Medicaid programs and Medicare all pay for cochlear implants, the eligibility bar is high. Beyond that, a cochlear implant requires delicate surgery, a recovery period to heal the scars caused by inserting the implant under the skull, and generally it’s there for a lifetime, unless you choose to have the implant surgically removed. At the moment, the surgery required to implant the device destroys any extant hearing in that ear. New devices are in the works that would preserve existing hearing but as far as I know, they haven’t received FDA approval. 

BNR: What was your biggest surprise in all the research you did for the book?

KB: The biggest surprise was finding out how many people have hearing loss. There’s such a stigma associated with hearing loss that people don’t want to acknowledge it, with the result that there is not much consciousness of hearing loss in society at large. But tens of millions more people suffer hearing loss than vision loss. Look at how many of us wear glasses! Tens of millions more should also be wearing hearing aids. It’s another indication of the stigma of hearing loss, and the denial that accompanies it. This stigma also affects statistics. When I began my research, the accepted figure for those with hearing loss was 36 million. This was the number used by the NIDCD (National Institute on Deafness and other Communication Disorders). Then, about a year into my reporting, Frank Lin at Hopkins published the results of an epidemiological study that set the figure at 48 million. Lin’s was a carefully documented study, with hearing loss determined by hearing tests. The NIH is certainly a reliable source. How could there be such a disparity? 

Finally after many weeks, I finally got the answer from the NIDCD. Their figures, it turned out, were self-reported cases of hearing loss. As is typical anecdotally, a quarter of those surveyed by the NIDCD denied that they had hearing loss. Most official reports now use Frank Lin’s 48 million figure.

BNR: And it seems like hearing loss could get more prevalent. The volume of the world is much louder than it was only a few short years ago. You wrote about how the decibel levels of some toys for toddlers is deafening, and the ubiquity of earbuds in teen and young adult ears is potentially damaging over the long haul. Hearing impairment already isn’t so much the issue of the aged as people think it is, but will it become an issue for the younger and younger?

KB: It already is an issue. Nineteen percent of teenagers have some degree of hearing loss. Part of this may be from excessive iPod use, but it may also be from video games or the decibel levels at sports stadiums or concerts, or in restaurants, or simply living in a noisy city. Farm work is often damaging to the hearing because the machinery tends to be so loud. Recreational shooting is very damaging to the hearing. Overall, the rate of hearing loss for younger people is probably not that much higher than it was a century ago. But it should be far lower. A century ago, diseases like mumps, measles, scarlet fever or any kind of high fever, as well as a general lack of good health, resulted in large numbers of young (and old) people with hearing loss. These days, children don’t get those diseases; they aren’t sent to work in factories at a young age or into mines or sent to work around noisy machinery. The incidence of hearing loss in young people should have gone down. But it hasn’t. The difference is that now the causes of hearing loss are avoidable. Hearing loss can largely be prevented. 

BNR:  I was fascinated by the revelation that the U.S. government is paying more than a billion dollars annually to help veterans deal with tinnitus and hearing impairment (and that those two outweighed claims for PTSD in 2010 by more than triple). Do you see the government’s drive to find sources of prevention and treatment as something that will spill over into the private sector?

KB: Hearing loss and tinnitus are the two largest categories of service related disability claims in the military. PTSD is third, and generally far outweighs hearing loss and tinnitus in its impact on the veteran’s life. PTSD is more expensive to treat, and a devastating condition for many. But yes, the VA is doing very good work on hearing loss and especially on prevention. The Department of Defense has set up an ambitious “Hearing Center of Excellence” at Lackland Air Force Base, in Texas, where researchers are developing better kinds of hearing protection, better registries of hearing loss, more efficient clinical care and doing other research into hearing loss. The executive director of that Center is Lt. Colonel Mark Packer, who is also a member of the Hearing Restoration Project, a consortium of scientists whose work is funded in part by the Hearing Health Foundation. Consortium members share their findings, and often work collaboratively. The military contracts with private sector researchers on some projects, and it shares its own findings. The military is especially interested in hearing loss prevention. One of their successes is an earplug that shuts down when an excessively loud noise, like a blast, occurs, but allows wearers to hear what their colleagues in the field are saying. 

BNR: What brought you the most hope as you put together the book?

KB: For me personally, coming to know other people with hearing loss, becoming active in the Hearing Loss Association of America, gave me perhaps not hope but comfort. I was not alone in this. I also hope this public awareness will lead to insurance coverage for hearing aids. Right now, hearing aids are considered medical devices, and — except through the VA — are covered minimally or not at all. I also am made hopeful by increasing public awareness of hearing loss. Not only will this result in accommodations for the hearing impaired but it will encourage those with hearing loss to accept it, and to get it treated. As of this writing, one in seven people who could benefit from hearing aids uses them. That’s ridiculously low. What brought me most hope was the research that is being done on finding a cure for hearing loss. Researchers nationwide, but especially at the University of Washington and Stanford, are making tremendous progress in learning how sensorineural hearing loss might be prevented (by gene therapy in those with genetic hearing loss) or reversed (in those with hearing loss caused by noise or other ototoxins). Practical applications are far in the future — I’m pretty sure I won’t be around to see them. But they do represent hope that hearing loss will become a rare event.

 

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