Sunday, February 3, 2013

Katherine Bouton talks about Shouting Won't Help: Why I --and 50 Million Other Americans--Can't Hear You, Owning a disability, and why we should give up our love affair with noisy environments

Katherine Bouton is a former editor for The New York Times and a current contributor to their Science Times Section.  But for 22 years, she kept her growing deafness a secret.  She now has cochlear implants and hearing aids, and her book, Shouting Won't Help: Why I--and 50 Million Other Americans-- Can't Hear You, is fascinating, profound and important, chronicling her coming to terms with her hearing loss, and exploring the stories of others.  
And the book has special meaning to me.
Sixteen years ago,  I gave birth to my son and became critically ill, and was not expected to survive. Some of the meds that saved my life were ototoxic, and though I got completely well again, my hearing became a little wonky. Like Katherine, for a long time, I ignored the problem. I refused to consider anything was wrong, mostly because I felt desperately ashamed. Would people think less of me if they knew?  Would I be cut off from the busy world I loved? I discovered, that owning up, letting others in, actually increases intimacy--the same way a pair of hearing aids helps in group settings. I'm more in the world than I ever was before--and truthfully, there is nothing more powerful and healing than giving up shame. Nothing more brave.
Katherine's journey from acceptance to action is inspiring. Shouting Won't Help is an astonishing book and I'm honored to have Katherine here. Thank you, Katherine.

I loved that you wrote about “talking back to your impairment,” and owning it. Can you talk a bit about that please? 

When you lose one of your senses, or the use of a limb, or if you have a mental illness, you tend to identify yourself in terms of that impairment. You say, I'm an amputee. I'm schizophrenic. I'm hearing impaired. The disability comes first, you come second. 

But what you learn as you come to terms with the loss is that you're still the person you always were, with an added factor. The politically correct way to refer to someone like me is as a person with hearing loss. That's fine. I am a person, and I do have hearing loss. Advocates for people with hearing loss don't like the term "hearing impaired" and they really don't like deaf. The Deaf (the culturally deaf, who use sign language) don't like the appropriation of the term either. But the fact is that I can't hear a thing without my hearing aid and cochlear implant. I'm deaf. 

So I happily use all three: I'm a person with hearing loss, I'm hearing impaired, or I'm deaf, depending on my mood. The first two I use when I'm feeling sorry for myself or ill at ease. "Deaf" I use when I'm comfortable, making light of the situation. 

Can you also talk about how writing this book freed you in some way?

I was a champion denier. I told almost no one except close friends that I had hearing loss, and I told my close friends a modified version of the truth. Even my family didn't know. My son transcribed some of the tapes of interviews I did and at one point he said, "Mom, I had no idea what you were going through." 

I lost my newspaper job in part because I refused to acknowledge my handicap and the need for accommodation. Once I was gone, I didn't know what to do with myself. So I decided to write a book. 
The only subject that really interested me was hearing loss. And the only way to write about it was personally. When I wrote my original proposal I struggled to find the voice I wanted to present. I was at that point quite depressed about my hearing loss but with every draft I got a little more upbeat. Finally, just before my agent submitted the book to publishers, he suggested that I end the proposal with something that I'd gained from hearing loss, a happy ending. And once I wrote it it was true.  
Here's what I gained: Closer, more intimate friendships -- especially because I did fewer group activities and saw friends more often one on one. A new more honest relationship with my family. A new understanding of what it means to have a hidden disability. I'm a better person for it. 

What are some of the ways people who hard of hearing can come to that elusive state of acceptance?  

One way is to go out and meet people like yourself. Almost every area has a local branch of the Hearing Loss Association of America, and the HLAA annual meeting is an event I would recommend to anyone. The first year I went to the annual meeting I was literally awestruck at the variety and sheer number of people with hearing loss. Many of them were young, many were clearly professionals. The workshops and talks were illuminating and helpful. 

I think you first have to acknowledge your loss to yourself. You have to stop saying: My wife mumbles. It's too noisy in this restaurant. Then once you find out you have hearing loss, treat it. Get a hearing aid, work and practice with it. You may never need to tell anyone you have hearing loss. But if it gets to the point where you still aren't hearing well, then come clean. I was amazed at how understanding people were. I've made so many friends I'd have been reluctant to talk to before, simply by starting the conversation with the information that I have hearing loss. 

And why do some people use hearing loss as a protection?

One of the people I interviewed for the book was a psychoanalyst in Seattle, Jacqui Metzger. She herself has hearing loss, as do some but not all of her patients. She told me a story about a new patient who came to her and who, after a few sessions, still seemed oddly removed, not interacting with her. She said, "I have this sense we're somehow missing each other as we talk. I wonder if you have a hearing loss." The patient acknowledged that that was the case. "We talked," Dr. Metzger told me, "and over time we came to understand that not wearing hearing aids was a way of keeping people at a distance." Now she says, not only does her patient have a better relationship with her but he's discovered the satisfaction in closer relationships with other people.

Can you please talk about how you came to accept your own loss?

I got tired of having people think that I was stupid, or aloof, or uninterested. I decided that it was better to own up to hearing loss. The first step I took was going to the HLAA national conference. After that, it became easier to tell people. There's still a part of me that's reluctant to tell, however. Old stigmas die hard. 

There's a very funny scene in The Hunchback of Notre Dame, where the deaf and dumb Quasimodo  is brought before a judge, who is himself deaf but refuses to acknowledge it: "It was better to be seen as an imbecile than deaf." I decided I didn't want to be seen as an imbecile any more. And then, as I said above, once I began to meet other people with hearing loss it became much easier to accept it as a part of myself, a part that I was simply going to have to make the best of.  

I was surprised to read that while hearing impairment strikes any age, most people will wait until their seventies to get a hearing aid. What kinds of things do you think we can do to change this? 

This is a concrete example of the stigma of hearing loss. People don't want to be seen as deaf, because deafness is considered a disability of old age. That simply isn't true. The vast majority of the elderly with hearing loss lost their hearing before they were 60. It's probably worsened as they age, and that may account for greater hearing aid use. But I think it's also a reluctance to admit to hearing loss when you're part of a society that so values youth. 

One of the more fascinating things you write about is the dilemma of parents of hearing impaired kids, and whether they should offer their kids cochlear implants now or wait, hoping to avail their kids of the new technology that could possibly regenerate hearing cells.

This is a hard decision. I do know that the younger a child is given implants, the better he will learn to hear and speak. There are no studies yet of the long term academic achievement of children implanted before the age of 18 months, but they do much better in the early school years. Implants in children are recent enough that children implanted at that optimal young age have not yet reached high school and college. 

As for waiting, that research is fascinating but even the researchers say it will be many years before this technology is available to humans. They expect that within a decade they may have mastered the basics, but then there will be decades of safety and efficacy testing, developing sophisticated techniques and so on. If it were my child, I think I'd go for two implants right at the start. 

There is, of course, also a section of the deaf community, that is against implants or regeneration, because they want to preserve what they see as deaf culture. Can you speak about that?

I'm sympathetic with the Deaf wanting to maintain a strong community based on a common language, American Sign Language. What I take issue with is imposing that belief on others. There is a powerful documentary (available on Netflix) called Sound and Fury. It follows two brothers, both members of the Deaf community as they consider getting implants for their children. Feelings run high -- the film is very intense -- and relatives say cruel things about the mother who wants to get the implants for her newborn: "If she doesn't want the baby because he's Deaf, I'll take him" or "My friends wonder why she won't love her own child, even if he's born deaf."

What question didn't I ask that I should have?

You haven't asked about noise, which is the major cause of hearing loss in the country, by a long shot. Noise in restaurants, sports stadiums, at rock concerts, on city streets, at Nascar races, out hunting, in subway stations -- it's all unregulated. OSHA recognizes the dangers of noise in the workplace, and requires noise protection. But once you're out in the world, you're on your own. Chapter 3 is about our love affair with noise. I was astounded at the decibel levels recorded at football games or in chic restaurants. I was also interested in the psychology behind amping up the sound (you'll have to read chapter 3 -- it's complicated). Noise is the number one cause of hearing loss and it's completely preventable. 

Buy the book:
Visit Katherine on twitter: @katherinebouton


Leora Skolkin-Smith said...

How brave and amazing it is to have you, Caroline and Katherine, be so candid about your hearing problem. I cant imagine how difficult the world is to navigate without hearing it well. And with what courage one admits this problem, usually overlooked. Brava, dear friend,

meg pokrass said...

What a wonderful, honest conversation. I know how hard this is to talk about, there is so much stigma attached to hearing loss, and you are both bringing this very difficult and INVISIBLE disability into our hearts and helping us to GET it better.

Caroline, having heard you speak at many author events, I would not have known, there to be any hearing issue, you are such a gifted speaker! My goodness. This is mind-blowing and you are both so brave. Thank you.

Rochelle Shapiro said...

In all the years I've known you, Caroline, I have seen you give talks in front of two hundred people that went so well that I would NEVER have guessed that you had a hearing problem!

Anonymous said...

Katherine's book is incredible.

Dan the husband said...

Good interview--great book.

Clea Simon said...

You know, all of us have *SOMETHNG* that isn't "perfect." For me, it was my family history of mental illness. We all feel like it sets us apart, makes us alone and marked. But the truth is, these differences are what make us human -- and when we are open about them, we finally see/hear from all the others like us and realize how not-alone we are!! And by the way, I've heard you read and do Q&A sessions several times and never would have known about your hearing. So thank you for sharing that with the rest of us flawed humans! We love you the more for it.

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