Author Katherine Bouton Opens Up About Going Deaf

Transcript

IRA FLATOW, HOST:

As a journalist, I've known Katherine Bouton for over 30 years. I first met her on a trip to Antarctica in 1979. A famous picture of me interviewing penguins was taken by Ms. Bouton. But I was never fully aware of the extent of the private battle she has been fighting, an invisible condition that affects 50 million Americans, I'm talking about hearing loss.

If you think hearing loss is something only older people have to worry about, you may be surprised to find out, as I was after reading her book, that 50 million people suffer from some degree of hearing impairment, and it can happen at any age. Ms. Bouton went deaf at the age of 30. Today she has help from a cochlear impact and hearing aids, but it's still a struggle.

In her new book she describes how she learned to cope with hearing loss and why we need to do more to address this widespread but misunderstood problem. Katherine Bouton is author of "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You." It's going to be on bookshelves next week on February 19. She joins us here in our New York studio. And if I'm speaking more clearly today than normal, it's because Katherine Bouton can't hear me, and she is mostly lip-reading. Is that correct?

KATHERINE BOUTON: I am partly lip-reading, but you have a good voice for me.

FLATOW: That's good.

BOUTON: Your voice is at a frequency level that is one of my better ones.

FLATOW: Finally, something good with my voice.

(LAUGHTER)

FLATOW: But you don't call it lip-reading anymore, do you?

BOUTON: You're supposed to call it speech-reading.

FLATOW: Because?

BOUTON: I think - I don't know why the hearing profession wants that. But, in fact, it is reading not only the lips, but body language, facial expression, so speech-reading is more accurate.

FLATOW: Our number is 1-800-989-8255 if you'd like to talk to Katherine Bouton. And if she can't hear what you're saying, I'll relay the question from my reader here.

This is a really interesting story. You discovered when you were 30. What - tell us what happened in that...

BOUTON: Well, I was sitting at my desk, writing. I don't remember what I was writing. I think I was writing a piece for The New Yorker that was published before I went to Antarctica with you. And my phone rang. I could hear the phone, and I picked it up. I always used to pick up the phone with my left hand and put it to my left ear so that I could take notes with my right, and I couldn't hear anything.

And I said, hello? Hello? Hello? Is anybody there? And then I switched to my other ear, and somebody said, yes, I'm trying to reach Katherine Bouton. So that was alarming. But then after I hung up on that call, which I listened to with my right ear, I made various other calls. In those days you could call the weather, and you could call time. And so I made various calls to see whether I can hear out of both ears, and I couldn't hear out of my left ear.

I wasn't initially that alarmed because I, like all children of the '60s and '70s, had gone to my share of rock concerts and had lost my hearing temporarily before, and I thought maybe this was a temporary loss.

FLATOW: Mm-hmm. And then it spread to your other ear.

BOUTON: It didn't spread to my other ear for a couple of decades. I spent most of my 30s and 40s hearing with one ear, hearing with my right ear, and I did pretty well with my right ear. Around the time I turned 50 - my hearing loss was progressive, so the left ear was going down, down, down, down. And around the time I turned 50, the left ear was so far down and the right ear was so basically nonfunctioning that I finally gave in and got hearing aids, which I should have done long, long, long before that.

FLATOW: Mm-hmm. You talk about so many things in your book. Is there a central message you want to give people about hearing loss?

BOUTON: Yes. There are a couple of messages I want to give people. One is that if you suffer from hearing loss, don't suffer alone. There are a lot of people out there like you. I spent a good number of years not acknowledging my hearing loss. I cut off a lot of my friendships. I antagonized a lot of people. I eventually lost my job. I was - I talk about it in the book.

And I really thought this was something that was happening only to me. After I left the Times, where I worked for 22 years, I went to the annual meeting of the Hearing Loss Association of America. That year, it was in Washington, and that was a complete revelation to me. There were so many people there, and they were so interesting, and the talks were so interesting, and everybody was going through the same thing I was.

So that's my first piece of advice is get out there. There are other people like you. Acknowledge your loss and talk to other people. My second, I want to just add this, is to - we need to do something about noise...

FLATOW: Yes.

BOUTON: ...because it's by far the largest cause.

FLATOW: We'll get into that. I'm talking with Katherine Bouton, author of "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You" on SCIENCE FRIDAY from NPR.

And the title of this book, "Shouting Won't Help," is symptomatic. People just scream at you, don't they?

BOUTON: They either scream at you or they lean way in and talk very close to your ear. And just to go back to speech-reading for a minute, if somebody does that, I'm at a total loss. I need to see their face to hear them talk. So don't shout. Don't lean in and whisper.

FLATOW: Mm-hmm. I have partial hearing loss in one of my ears due to a - an experiment on television with a firecracker that went bad. And I - so I have tinnitus in my ear. It's been ringing for over 30 years. So I can - you know, one thing I'm very conscious of is the noise around me because I want to protect the good ear, you know? And there is so - and you write about this in your book, how we worship noise, basically.

BOUTON: Yes. Mostly in recreational activities. Concerts, stadiums are incredibly loud. The whole dispute about guns and hunting. Nobody ever bothers to mention the effect on hearing, but hunting is a major cause of hearing loss, usually only an ear next to the gun.

But even just walking down the street to the studio today, I have an iPhone with a decibel reader on it. And between Times Square and Fifth Avenue, where this office is, the decibel meter jumped between 80 and 90 the entire time, which is pretty loud.

FLATOW: Right. Know where I saw one of the worst offenders? The bathroom in airplanes, that little flush toilet that makes a f-f-f. I took my decibel reader in there. It was over 110.

BOUTON: Wow. I didn't know that. That's amazing.

(LAUGHTER)

FLATOW: It is so loud. It's just amazing. Is there anything to be done about this or any, you know, do we tell our kids because my kids have those, you know, they have the - their earplugs in, and I can hear it. And I say if I can hear it, it must be too loud.

BOUTON: It is too loud. It's not - I mean, there's a lot of different scientific opinion on this act of moderate noise over a long, continuous period. So even if your kids turn down their headphones, their iPhone - their iPods, if they have them on 12 hours a day, they may still be damaging their hearing. If they have them on 12 hours a day and you can hear it, they are damaging their hearing. So that's one thing we can do.

But I think we have a lot of noise ordinances in this country, and except in a workplace, we don't enforce them. It's - you don't have to have the headphones on to be exposed to noise. All you have to do is go out to dinner in a restaurant or worse, be a waiter in that restaurant. So you're there all day long with that noise blasting around you.

FLATOW: Talking with Katherine Bouton, author of "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You." My number, if you can hear me, is 1-800-989-8255. You can also tweet us, @scifri. Stay with us. We'll be right back - excuse me - after this break. I'm Ira Flatow, this is SCIENCE FRIDAY from NPR.

(SOUNDBITE OF MUSIC)

FLATOW: This is SCIENCE FRIDAY. I'm Ira Flatow. We're talking with Katherine Bouton, author of the book "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You." It hits the bookshelves next week on February 19. Our number, 1-800-989-8255. Let's talk a bit about hearing aids because people always talk about hearing aids. How effective are they? You have - you wear hearing aids?

BOUTON: I wear a hearing aid.

FLATOW: A hearing aid and...

BOUTON: And a cochlear implant in the other ear.

FLATOW: Is there a difference between the two?

BOUTON: Oh, yes. I could not wear a hearing aid in my left ear because my hearing is non-existent. I have profound hearing loss in my left ear. A cochlear implant is surgically implanted. It operates in a completely different way from a hearing aid. It takes digital signals which it sends to the brain, and then the brain interprets those digital signals as words. On the other side, I'm hearing those same sounds in terms of sound waves which are amplified by my hearing aid, and they're going to the same brain pathways (unintelligible) trying to coordinate the two different kinds of signals that are coming and turn that into speech recognition. What was your...

FLATOW: I'll ask it. My mother wore hearing aids until she was 98, passed away, and she never, never got used to them. She never thought they really helped her and sometimes she would say I have to take it out of my ear to hear better. Are hearing aids - do they work?

BOUTON: They should work. I don't know where your mother got hers. But it's very important if you're wearing hearing aids to have them properly fitted. There are - there's a new kind of hearing aid called an open hearing aid which does fits very loosely into your ear and then house it behind the ear component. The fitting in those is not as important and because there's - it's just not so close, but mine are full in-the-ear things. Probably not the same size as your mother wore, but they do fill up the ear canal, and if mine were not properly fitted, it would be painful.

And in fact, if I gain or lose weight, my hearing aid fits better or worse. At one point when I got a new hearing aid, I had, in between, lost about 10 pounds. And they couldn't use my old mold. They had to recalibrate the size of my ear in the shape of the hearing aid. So your mother probably was, and I think a lot of people, even today, are wearing hearing aids that don't fit and that don't really work because they don't wear them for starters or because they haven't been properly programmed or because they're not the right hearing aids for that person.

FLATOW: Mm-hmm. When you got your implant, did you - it says in the book that you had to relearn how to hear again. What was that like?

BOUTON: It was very, very hard for me because I always wore my hearing aid. I was still working. I couldn't afford not to hear. I couldn't afford to just wear my implant all the time and not hear out of my other ear. So I didn't give my implant a chance in the first five or six months when - which are the crucial months.

But the way you relearn to hear, you work with the - I worked with a speech pathologist who would go over the sounds that were difficult for me. She would cover her mouth and she would say am I saying fit, fat or fat, fit? And I couldn't really hear the difference between fit, fat, fat, fought, any of those things or between bit, bat, but. So I practiced with her. I practiced a little bit on my computer by myself at home. I put headphones on and listened to recorded books and read along with them and then tried to take my eyes away and see if I could still follow. It's - learning is not quite the right term for it. You're really just training.

FLATOW: And you also said that you call yourself deaf, but that's not politically correct. Please explain that.

BOUTON: Well, deaf with a capital D refers to the deaf community which is a community with a culture and a language, American Sign Language. Even people who wear hearing aids can be members of the deaf community if they choose to define themselves that way, and if they use American Sign Language as their primary language. I and many other people who have hearing loss just got tired of saying I'm a person with hearing loss and so say I'm sorry, I didn't hear you, I'm deaf, small D.

And it's really just - it's short hand. And it's also a little bit - it gives you just a little sense of triumph of being able to say I'm deaf, you know, speak more clearly to me. So...

FLATOW: Mm-hmm. 1-800-989-8255 is our number. David from Syracuse, New York. Hi. Welcome to SCIENCE FRIDAY.

DAVID: Hi, Ira. First-time caller. I love your show. Thanks a lot for taking my call.

FLATOW: You're welcome.

DAVID: I - when I was about four or five years old, I developed the mumps and - in my left ear. I wound up with a 55, 60 percent hearing loss that was diagnosed at the time as what they would call a nerve deafness. Now, I'm just curious - it's gotten worse over the years. And I just would like to know from your guest if there have been any advances, they even still use that term, nerve deafness, and if there have been any other advances other than a cochlear implant that are kind of hanging out there.

FLATOW: Let me see if I can...

BOUTON: I did hear that.

FLATOW: OK.

BOUTON: You're asking whether the term nerve deafness is still used. It is. It's a misnomer most of the time. Most hearing loss that people have is sensorineural, which means that your - either your sensory, your auditory nerve or the hair cells in your cochlea are damaged. The only time it's truly, by definition, nerve damage is if it's the auditory nerve. Most of the time it's the hair cells. But that's still called sensorineural hearing loss, and it's the kind most people have.

FLATOW: All right. Thank...

DAVID: I think that - okay. All right. Thanks, Ira. Thank care.

FLATOW: Thank you. You say that what we think as nerve damage or hair cell damage really is not what people really have.

BOUTON: Oh, they do.

FLATOW: They do.

BOUTON: Yeah. Hair cell damage is the kind of damage that's caused by noise exposure. It's caused by exposure to autotoxins like various drugs. Cisplatin, unfortunately, which is a very valuable cancer drug, is an autotoxin. Vicodin is an autotoxin. And they all cause the same kind of nerve damage. They flatten your hair cells so that they can't communicate properly with the nerve that goes to the brain.

FLATOW: Is it possible to re-grow your hair cells? Because every week or so there's a little bit of good news about stem cells or something like that that might stimulate them to re-grow.

BOUTON: In 2010, Stefan Heller, who's at Stanford University, was the first to manage to regenerate hair cells in a mammal. Fish and birds regenerate their hair cells automatically. A lot of work has been done on this at the University of Washington, at Stanford, at Harvard and other places, trying to figure out why it is that fish and chicks can do it and we can't. I spent a lot of time at the University of Washington and at Stanford talking to the various researchers there, and they think that within a decade they may have mastered the techniques.

But that doesn't mean that this is going to be available to humans anywhere in the near future. It's just incredibly complicated work. I think that nobody wanted to estimate how long it would be before this could be applied to humans, but they were willing to say between 10 and 50 years.

FLATOW: So...

(LAUGHTER)

FLATOW: Some things are always 30 years away.

BOUTON: Yes.

(LAUGHTER)

FLATOW: 1-800-989-8255. Talking with Katherine Bouton, author of "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You." Give us some tips for the correct way to talk to people who can't hear you.

BOUTON: Well, don't shout.

FLATOW: Don't shout. Because no matter how loud you shout, it's not going to help.

BOUTON: Don't lean in and talk into the person's ear because as we were discussing before with speech reading, you need to see the whole face, the body. If you're in a room with a bright light source, let the person who is hearing impaired sit with their back to the light source because otherwise you'll be silhouetted and they won't be able to read your body language. I have a whole list of suggestions about how to talk to people with hearing loss, mostly because I'm constantly telling people how to talk to me. They're in the book. I...

FLATOW: Yeah. One thing you did mention I thought was very interesting is I can't cook and talk at the same time.

(LAUGHTER)

BOUTON: I love to cook. I'm a pretty good cook. And I love to have people over for the holidays. I - last Christmas I had 25 people. And, you know, my friends want to be helpful, and they come into my kitchen, which is a New York City kitchen, and it's not very big anyway. And they want to talk to me while I'm trying to juggle about five different dishes at the same time. And it's distracting. I make mistakes in my cooking. Sometimes I spill food on myself, burning food. But I absolutely cannot hear what the other person is saying, and I finally just say, can you leave? This is - I appreciate the thought, but it's not helping.

FLATOW: You also tell people - or people tell you - I think you were saying that your husband Dan used to get tired of hearing you say, what's that? What's that?

Can you find something else to say besides what's that when you couldn't hear it?

BOUTON: Yeah. He says - what I would say is: what? Mostly these days I say sorry. It seems a little bit more important. Sorry, can you repeat that? The original title for my book was "Say What?" And I didn't think enough people in America said say what, but now I have discovered that plenty do. It also helps. This is another tip, actually. When somebody does say what or sorry, don't repeat exactly what you said before. If you can possibly find a way to rephrase it, the person with hearing loss is much more likely to be able to pick it up the second time around.

FLATOW: Mm-hmm. Let's go to the phones. Susan in Kansas City, Missouri. Hi, Susan.

SUSAN: Hi. I'm deaf in my left ear and when people talk on my left side, I can't hear a thing. It's like being completely deaf. And I have a real hard time understanding conversations on TV. I don't know if other people who are personally deaf having that problem, but it's a real problem for me.

FLATOW: Because you are deaf in one hear?

SUSAN: Yes. Sound comes through my head and I can't describe it because I've never had sound in both ears. But apparently when people are on my left side and they start talking to me, I don't hear them at all. If I'm with friends, they know and poke me or answer the question or say look at that person.

FLATOW: Hmm. Katherine, she is saying that she is deaf in one ear and it really is - even though she can hear in the other ear, it doesn't help that much.

BOUTON: OK. Yes. No, I can really relate to that. I was in that position for about 20 years. I always made a point if I possibly could to position myself on the - with the person who is talking to me on my right. I know people talk to me on my left side who I had no idea they were talking to me.

And recently - actually, just yesterday I ran into a man in my building who said, oh, I (unintelligible) your article in the Times on Tuesday about dementia and hearing loss. He said it was so interesting. I had no idea you had hearing loss. But I do remember one time when I was talking to you and you didn't answer me, and I thought maybe I had said something offensive. So yeah, it is a problem and I don't have any suggestions except just to try to always position yourself correctly.

FLATOW: I'm Ira Flatow. This is SCIENCE FRIDAY from NPR.

I'm talking with Katherine Bouton, author of the book "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You." One would think that if 50 million Americans have this problem, we'd be more aware of it or that there might be some - more help coming for these Americans.

BOUTON: I think that we're not more aware of it because there a stigma associated with hearing losses. As you said in your introduction, most people think that it's a natural part of aging. If you're getting towards aging, you don't want to add to the impression that you're already there by wearing a hearing aid or acknowledging your hearing loss. So a lot of people do not acknowledge hearing loss.

In studies - accounting(ph) hearing loss, if you ask if the - if the epidemiologist simply asked someone if they have hearing loss, a lot of times they'll say no. They may not be aware of it or they may just not want to admit it. The same thing is true with hearing aid use. If you ask somebody if they use hearing aids, like Ira's mother, they'll say yes, but in fact they're taking those hearings aids out most of the time because they're uncomfortable. So they're not using them properly. And this really, really skews the statistics. It was one of the hardest things in writing my book, was to try to figure out exactly, you know, what number of millions of people in America have hearing loss.

FLATOW: Are there any things that are happening now that help hearing people? Any - does technology help us besides the hearing aid?

BOUTON: Well, cochlear implants are wonderful. And even though I've had a hard time with mine, I wouldn't not wear it for anything. There is a lot of technology that's coming about and I think it's not really intended to help the hearing impaired but it does. For instance, the New York City's subway system has installed LED lighting and messaging for when the trains are coming, what trains are delayed. I, you know, for 40 years could never hear a thing on the subway. And now all I have to do is read like everybody else.

There's also - this is (unintelligible) airports, things are visually displayed as well as somebody talking to that megaphone at you that you can't hear. And, you know, I think there - one of the things that I really want to do with this book if I can is to raise awareness of how difficult it is for people with hearing loss to get around.

FLATOW: Yeah. Does text messaging help? Unintended consequence?

BOUTON: I love text messaging. I love email. I can't imagine what my life would have been like before text messaging and email. I would have been just a completely different person, and really, I think, totally isolated.

FLATOW: Katherine, thank you very much for taking time to be with us today. It's so good to see you again.

BOUTON: Thank you.

FLATOW: Katherine Bouton, author of "Shouting Won't Help: Why I - and 50 Million Other Americans - Can't Hear You." Everybody knows someone with a hearing problem, everybody will certainly benefit from reading Katherine Bouton's book.

That's about all the time we have for today. Before we go, we want to remind you that we are doing our winter photography contest, starts in about three minutes. Take some great photos, send it to us at SCIENCE FRIDAY, we'll put them up there and judge them and come up with some winners. It's our winter season photography contest. Transcript provided by NPR, Copyright NPR.