NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
Six years ago, a movie called Sound and Fury gave us extraordinary access to a world that few of us understand. The documentary film is an intimate portrait of the Artinians, an extended family with deaf and hearing members across three generations.
As the movie begins, Peter Artinian and his wife face a difficult decision. Their then four-and-a half-year-old daughter Heather wants to hear. There's a device called the cochlear implant that can help her do that, but, as we learned, it's tremendously controversial.
Some in the family see the device as at least a partial cure for a handicap, but others argue that it denies a child access to her own rich language, ASL, American Sign Language, and to another birthright: an intimate connection to the thriving and robust world of deaf culture. The movie ended with the Artinians' decision not to implant Heather and with the family painfully divided.
Six years later, filmmaker Josh Aronson went back to find the Artinians and the debate in a very different place. Heather received the implant when she was nine years old. Now 13, she's the only deaf child at her school on Long Island in New York.
Later in the program, we'll talk with Heather and with her father Peter. We also want to hear from those of you familiar with cochlear implants about your experiences, and we welcome questions from those of you just learning about them and the issues around them.
We're providing real-time captioning of this program at our Web site. For more information on the captioning, go to npr.org/deafculture - deafculture all one word. Our telephone number is 800-989-8255. That's 800-989-TALK. The e-mail address is firstname.lastname@example.org.
Josh Aronson is director and executive producer of Sound and Fury. The film was nominated for an Academy Award for Best Documentary in 2000. His follow-up is called Sound and Fury: Six Years Later, and he joins us now from our bureau in New York City. Nice to have you on the program today.
Mr. JOSH ARONSON (Director and Executive Producer, Sound and Fury): Thank you very much, Neal. Nice to be here.
CONAN: The story of how you came to make this film I guess is an indication of how much the debate over cochlear has changed. Tell us a little bit about it.
Mr. ARONSON: Well, how I made the update, you mean?
CONAN: Well, no, the original film.
Mr. ARONSON: The original. Well, I made the original film really because I ran into the story. I'm a documentary filmmaker and I'm always looking for stories. I had no contact with the deaf world. I didn't really know any deaf people and there was no deaf members of my family.
And I was literally walking down the street in Santa Monica with a friend of mine, and he's a fellow who raises money for one of the cochlear implant companies. And this was 1998 or so, maybe '97 even. And at the time there were probably five or 6,000 people in America that had cochlear implants. And as he said the word cochlear implant, we passed a woman who whirled around and pulled her hair back and showed us her implant. And she said, I have a cochlear implant. And it was just an astounding coincidence.
Mr. ARONSON: And we chatted for a while and we tested her. She turned around and she understood us. And she told us what a terrific benefit it was in her life. She'd been late-deafened, which is the term for someone who's not deaf at birth.
Mr. ARONSON: So she had some oral skills. She could speak when she lost her hearing as a teenager. But by the time she was, you know, 15, 16 years old, she was profoundly deaf. And it was 20 years later that she got the implant. And now she was talking on the phone again. It was a great benefit and it all sounded fine. And she told me that her deaf friends of many, many years shunned her after she got the implant.
Mr. ARONSON: And for me - I'm just a hearing person. I'm just walking down the street, and I hear that story and I was astounded. I had no clue; how could anyone respond that way? And she began to describe the issue of the cochlear implant in the deaf culture. And I just saw a story that was so terrific that I just went for it and just started reading. And I learned about the controversy in the deaf world between the oralists and the manualists that had been going on for 250 years.
CONAN: Well, for those of us who aren't familiar with the technology, give us a quick description of the cochlear implant.
Mr. ARONSON: Well, the cochlear implant is basically a device that works simultaneously internally and externally. It's a surgical process where the surgeon puts this thing called a cochlear implant into the cochlea, which is the snail-like portion of the inner ear, and inserts a wire. And the electrodes of the wire are aligned with the sections that would be the auditory nerve. I'm not a doctor, so forgive me if I'm not exactly accurate with this. And so then there's a receiver that's inside the head, like a bionic ear, if you will. And then they're sewed up.
And then on the external part there's a microphone that has a magnet attached that is, you know, sits above your ear. And it connects to the internal part by the magnet and there's a little processor that it's connected to. And sound comes in and then goes down the wire, is processed through the processor, back up; and then an RF transmitter sends the signal through the scalp to the implanted device which sends a signal into the wire, which is lined up with the auditory nerve, which sends an electrical signal to the brain, and the brain hears the signal.
Mr. ARONSON: Now the trick is to interpret the signal, and therein is a whole show in itself.
Mr. ARONSON: Because it's very complex and very difficult.
CONAN: And as I understand it, if children are implanted with it very young, while they're still learning language, it's a lot easier for them. And again, as you mentioned the woman you ran into on the street, if you had speech before you lost your hearing, again, it's a lot easier.
Mr. ARONSON: Exactly. You've got it exactly right.
CONAN: Okay. Now the family that you encountered is just extraordinary. We're going to be meeting two members of the family a little bit later. But how did you find them?
Mr. ARONSON: Well, you know, I had started making this film in the late '90s and did a lot of research and found a lot of people that represented different identity choices within the deaf world. Some people were very pro-implant, some people were anti-implant and some people had gotten an implant and changed their mind. So I was going to focus on people who demonstrated the range of identities in the deaf world, and I started filming that.
And I had a producer at the time - I brought the program to WNET and they loved it and introduced me to Roger Weisberg, who was my producer on the film. And Roger and I decided that what we needed was a family that we could have as a longitudinal story, if you will, a family whose story would weave through the entire film.
And so our associate producer, whose name was Julie Sacks, was looking all over New York through the cochlear implant surgeons and through the audiological services to find a family for us. So along the way she kept hearing about this extraordinary family on Long Island called the Artinians; because the deaf world is very small, and once you put your toe in that world you'll run into pretty much everybody.
And Julie and I went out to meet the Artinians. And I met this wonderful family and all the different generations were there; and it was the whole story right in front of us. What we didn't know at the time, and it hadn't happened yet, was that Heather was going to ask for a cochlear implant. And that was just luck for us as a filmmaker, because that set the story in motion.
CONAN: Here's an e-mail question that we got from Karen(ph) in Rochester, New York. And by the way, if you'd like to join the conversation, our phone number: 800-989-8255. And the e-mail address is email@example.com.
Karen in Rochester asks: Have you read R. Edwards criticism of your film in the American History Journal which states that you were truly unable to communicate with your film the concept of deaf people as a culture?
Mr. ARONSON: I have not read that particular criticism. But, you know, that was a struggle we had throughout the film and it's a very, very difficult problem. Because if you say to one person, what is the deaf culture? You know, every single person I ever interviewed that was a main question: Can you describe the deaf culture?
And it's very difficult to describe it, A. And it's very difficult to show it because the culture is a group of people who are connected by their language and by their history and by their shared experiences.
So we certainly showed scenes like that, but it was a struggle throughout the film to have it be balanced and to show the benefit of not implanting children so that they could be part of the so-called deaf culture, which is a very powerful, very rich, historical group of people. And there's about a half a million people - at least there were at the time of the film - about a half a million signing people who call themselves part of that deaf culture.
And, you know, I've heard their criticism before, and I can only say it's something we struggled very, very hard with. I'm sure when Peter comes on the program, he can speak to that also...
CONAN: Yeah, we'll...
Mr. ARONSON: ...because we tried to work together to do that.
CONAN: ...certainly ask him about it. Let's get a caller on the line. And this is Tim, and Timothy is calling from New York City. Hello?
(Soundbite of typing)
CONAN: Oh, I think we're hearing an interpretation. This must be a deaf caller. Give it a moment. Hello, Timothy, are you there?
(Soundbite of typing)
CONAN: It's a TTY. It's a devise than an interpreter uses to communicate back and forth and...
TIMOTHY (Caller): (Through Interpreter) This is Timothy, and I am deaf. I've been deaf for about five years as a result of illness and scar tissue. And I'm calling on a VCO, voice carryover devise. And what I wanted to say is I had decided personally not for cochlear implant and surgery because of discussions I had with my doctors regarding previous head injuries and meningitis associated with the wire up through the cochlear to the brain, not going in the brain. So I have decided for that reason it's not good for me, medically.
But also, too, I'm not in the deaf community. I'm in the hearing community. And it's very difficult being in the hearing community being deaf because people don't want to talk on the telephone with relay and people don't want to learn sign language and things like that.
I did start a sign language group in New York just to try mainstream American Sign Language, and we have about 400 members in New York City. And that group, we meet monthly with about 30 of those people. And that's on meetup.com, New York City ASL.
But we have discussions around cochlear implant, and some people are very happy with cochlear implants. But it is a major surgery. The cost also is prohibitive. I've learned that the surgery would cost about $80,000 to $90,000, and Medicaid will pay for it or Medicare. But again, why is that surgery so expensive?
TIMOTHY: Other than that, I just want to tell people that on Google Groups I have Deaf America, where we deal with advocacy projects around closed-caption issues and the closed-caption issues around film and television, where they don't - for example, in New York City, we have New York One who only does partial captioning. They caption the news broadcaster in the studio, but no report and no studio work that's done - say, a movie review or whatever - is captioned. This is a Time Warner company and it's outrageous that they don't caption for the hard of hearing or the deaf. Go ahead.
CONAN: Timothy, thanks very much for the call. We appreciate your calling to tell us your experience. We're going to take more calls after a short break.
We're talking with director Josh Aronson about his documentary Sound and Fury and the shifting debate over cochlear implants. When we come back, we'll meet Heather and Peter Artinian, and we'll take more of your calls: 800-989-8255, 800-989-TALK. E-mail: firstname.lastname@example.org.
I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington.
We're talking today about cochlear implants, a technology that offers some deaf people a chance to hear. Many in the deaf community saw the implants as a threat to their culture. Today, the shifting debate over cochlear implants and the family featured in the Sound and Fury documentaries. Our guest is Josh Aronson, the director and executive producer of Sound and Fury and the follow-up, Sound and Fury: Six Years Later.
Of course, you're welcome to join our conversation. If you have experience with cochlear implants, call and tell us about it. We also welcome your questions if you're just learning about this technology or about these issues. Give us a call: 800-989-8255.
We may never get on as many calls as we'd like to, so today we'll launch a comment page after the program. You can find it at npr.org/deafculture. Again, deafculture is just one word. We'll take your comments until 5:00 p.m. Eastern time, or you can write us e-mail: email@example.com.
And Peter Artinian and his wife faced a painful decision about whether or not to have their daughter Heather implanted. Their story was featured in the Sound and Fury documentary films that we've been talking about. And Peter joins us now, also from our bureau in New York. He communicates with us today through his interpreter, Lynnette Taylor. Welcome to ALL THINGS - welcome to TALK OF THE NATION.
Mr. PETER ARTINIAN (Featured in Sound and Fury): (Through Interpreter) Hello, this is Peter here. I'm speaking for myself and my wife.
We did have issues when we faced this decision. Initially, we were very resistant to the idea of cochlear implants. We were concerned about the surgical procedure. We were concerned about deaf culture, it being transmitted, about our legacy. And when my daughter - you know, my daughter was so young when she asked. She was four-and-a-half. We felt like she wasn't old enough to really understand the issues.
But when she was older, Heather made the decision. She said this is what I want, Dad. She said there's no harm. I mean there's no harm. So, you know, I mean and every surgery has a risk. So I'm a human being and I have a right to decide.
And so that was part of our decision to change and allow her to get a cochlear implant. We spoke with the doctors and asked if, you know, what their opinion was about her being qualified; and she was and felt like it would be a successful implant. And it has worked very well for my daughter. She's very comfortable in both worlds - the hearing world and the deaf world. And she's happy, and whatever makes our daughter happy makes us happy.
CONAN: Mm-hmm. It must, though, have been a particularly difficult decision for you in no small part...
Mr. ARTINIAN: Yes, it was.
CONAN: ...in no small part because you had so publicly made the decision the other way.
Mr. ARTINIAN: Yes, exactly, it was a little difficult. But, you know, cochlear implants were relatively new on the scene. Our fear - it was a fear factor. It was our first exposure. I would - it's not a decision I would make for myself. I'm too old. I don't see any future benefits for myself. But my daughter's younger. I can see that it would be beneficial to her future. We went to counseling. It was a deliberative process. It wasn't a sudden decision, but it was a tough decision for us, yes. But hopefully she's happy. I mean she can speak for herself, of course.
(Soundbite of laughter)
CONAN: Well, let's hear from Heather, then. Joining us now is Peter's daughter, Heather Artinian, who's now 13 years old. She's with her father at our bureau in New York. And, Heather, it's great to have you on TALK OF THE NATION today.
Ms. HEATHER ARTINIAN (Recipient of Cochlear Implant; Featured in Sound and Fury): Thank you. It's great to be here, too.
CONAN: You received the implant when you were nine years old. Can you describe the moment when they first turned it on for you and you first started to hear things?
Ms. ARTINIAN: Well, when I was in the office I was really nervous because I had never heard anything before. First, when it turned on, I was really scared because I didn't even know what it was. It turned out to be a telephone ringing. It was a very emotional moment for me.
CONAN: Emotional, yes.
Ms. ARTINIAN: Yes.
CONAN: I bet it was. There's a wonderful moment in Josh Aronson's movie, Sound and Fury, where I guess it's your cousin, who was born deaf also at a much earlier age, and he starts to hear for the first time. It's a tremendously affecting moment in the movie.
Ms. ARTINIAN: Yeah.
Ms. ARTINIAN: I know.
CONAN: You now go to a hearing school. How do you like it?
Ms. ARTINIAN: Actually, I love it. It is a very...
Ms. LYNNETTE TAYLOR (Peter Artinian's Interpreter): And Peter says, can you imagine that?
(Soundbite of laughter)
CONAN: And have you been back to the deaf school that you attended before?
Ms. ARTINIAN: No.
Ms. ARTINIAN: Not ever.
CONAN: But have you been able to keep in touch with your deaf friends?
Ms. ARTINIAN: Yes, I keep in touch with my friends. It's important to me to keep in touch with everyone, no matter if they're deaf or hearing.
CONAN: Hmm, and what is - of the sounds that you've been able to hear thus far, you talk - you were much younger then, just five years old, four and a half to five years old - but you talk about wanting to hear a saw cutting through a tree. Have you been able to hear that sound and those kinds of things?
Ms. ARTINIAN: Yes, I have heard them. I am very happy.
Ms. TAYLOR: And Peter says, and cars honking, right? You've heard car horns.
(Soundbite of laughter)
Ms. ARTINIAN: Yes.
Mr. ARONSON: Neal, she's listening to you through headphones now, which is - and understands you.
CONAN: Well, that's an improvement over most people who listen to me.
(Soundbite of laughter)
CONAN: I wonder, Peter, any second thoughts, any doubts at all after you've gone through this experience?
Mr. ARTINIAN: (Through Interpreter) No, no. I'm very happy with the decision. And I now work in New York City. I work for Sorenson Communications. and I'm in both worlds, the hearing and deaf world, and I'm very happy. And I look at Heather, and I see Heather's doing well. I think it's an individual decision. But for myself, I'm deaf forever. I like it quiet. I like it peaceful.
(Soundbite of laughter)
You know, I see that, you know - I see other people getting all agitated by the sounds around them. But me, I just sort of, you know, it rolls off my back because it's quiet and I'm comfortable there.
CONAN: Let's see if we can get a caller in on the conversation. This is Mayola(ph), and she's calling from St. Louis.
MAYOLA (Caller): Hi, yes. Can you hear me okay?
MAYOLA: Okay, I'm outside. Yeah, I was calling because about the time my son was getting his implant, Mary and I were on the same online group and her son was about to get turned on - Peter's nephew.
CONAN: Mary Artinian, Peter's...
MAYOLA: Right, right.
Mr. ARTINIAN: (Through Interpreter) Yes, my nephew.
MAYOLA: And Mary was holding my hand through the entire process. And I didn't realize, while I'm agonizing over my son getting his, she's agonizing over her son being turned on and is this thing going to work? And I just wanted her to know, because we lost contact, that it has worked and it has worked in spades.
CONAN: Hmm. So you have no doubts about it either, do you, May?
Ms. TAYLOR: Oh, Peter's saying, good, I'm glad to hear it.
MAYOLA: Oh, I didn't have any doubt going in. My son was profoundly deaf. He couldn't hear an aircraft if he was standing next to the engine when it was on full throttle.
MAYOLA: With the implant he actually hears better than I do. We were told he would never speak. I can't get him to shut up. I cannot believe he's not talking now.
(Soundbite of laughter)
MAYOLA: It has given him a life. On the other hand, I understand 100 percent Peter's position in the movie when - because the deafness is very isolating. And when he got into the signing community and into the deaf community he was into a community that accepted him and loved him for himself. And having two deaf children, I can see they are not accepted into the hearing world unless they can speak.
Ninety percent of deaf children are born to hearing parents and live in the hearing world, and they are lonely. I sometimes look in my son's face and I see how lonely he is because he is not communicating the same yet as other children and he gets ignored. And we're Jewish. He can't go to the Jewish schools, so he's left out from his entire religious community. So I really understand how Peter feels.
CONAN: Mayola thanks very much for calling. We appreciate the information. Glad to hear that your son is doing well.
MAYOLA: Thank you. Bye-bye.
CONAN: Bye-bye. And I guess, Josh Aronson, that reinforces your point, it's a small world.
Mr. ARONSON: Yes. It's - that sort of thing happened to me wherever I would go, that people knew the Artinian's, people knew people I'd interviewed at Gallaudet University. And because of the Internet, of course, in the last 10-15 years, it's a great time to be deaf because you can communicate and you can reach out and it's a very, very tight community of people.
CONAN: Here's an e-mail we got from Rachel.
I'm an ASL interpreter and wanted to add something here. As with any choice in life, any permanent surgical or optional change to our bodies should be an individual's choice. An adult who wants a cochlear implant makes perfect sense. However, to implant a child or a baby I feel is completely inappropriate.
The implant will not make the child hearing and it should be used as an excuse for parents who don't want to learn ASL. The child is deaf and has a community, a language, a culture, and a life waiting for them. The parents have the opportunity to learn a language, share an experience, and expand their awareness of life.
And Peter, I wanted to ask you, that sounds like some of the…
Mr. ARTINIAN: (Through interpreter) And Peter is saying just look at my daughter. I mean, Heather can sign, can speak, is a member of both communities, goes, you know, back and forth between the two worlds. She has lots of options.
And if you don't have sign language and you don't have the option to communicate and express yourself, you know, it won't work. You need to be able to be part of the community and express yourself and then the person will be successful.
Mr. ARONSON: Neal, can I add something to that?
Mr. ARONSON: You know, that argument, which I know very well, and that perspective, which I know very well, is certainly valid. But the conundrum here, is as someone that I interviewed once - Bonnie Tucker is quite a famous person in the deaf world - she said when it comes to the implantation of children, if you wait to make a decision, you have made the decision. Because the prognosis of children who are implanted before they're two is so much better - in terms of speech, clarity of speech, reception of speech - it's so much better if you implant under two than if you wait.
So it's much more complex than that. And it's my perspective, over the years, that if you implant children they can have both worlds, as Heather does. Heather goes in and out of the deaf culture and the hearing world fluidly, seamlessly, transparently.
And the earlier children get cochlear implants, the easier it will be for them to function in the hearing world. And as long as the deaf people around them accept them and don't reject them because they've had the cochlear implant, they can function in both worlds.
CONAN: Heather, let me ask you, do you now wish that you had been implanted earlier?
Ms. ARTINIAN: Truthfully yes, because sometimes when I look and I hear people, I see they - how do you say - like they have an easier way to communicate -they'll turn around without difficulty. And yes, so I wish I had that ability.
CONAN: Do you ever turn it off?
Ms. ARTINIAN: Never. I only turn it off when I'm going to bed. That's it, I never turn it off.
Mr. ARTINIAN: (Through interpreter) Peter says she won't.
(Soundbite of laughter)
Mr. ARTINIAN: (Through interpreter) Only if there's a dead battery and she goes we have to go get one now dad, we're getting in the car, we're going to get a battery now.
Mr. ARONSON: Heather, I just made, as you know, the update to Sound and Fury -Sound and Fury: Six Years Later - and one of the things I discovered that Heather's into now is sports. She's a great athlete. And early on I was hearing, you know, about the cochlear implant that you can't play baseball with it, you can't do this, you can't do that, you have to take it off when you do sports.
Well, Heather refused that advice. And when she plays basketball she wears a bandanna to hold it on her head because she couldn't hear her teammates' calls. So she plays basketball with the implant, she plays volleyball with the implant. I don't know if that's unique or not, but that's what she does.
CONAN: We're speaking with filmmaker Josh Aronson and with two of the members of the Artinian family featured in his films about sound and fury. And you're listening to TALK OF THE NATION from NPR News.
Let's get another caller on the line. This is David. David's calling us from Freemont, California.
DAVID (CALLER): (Through interpreter) Hello.
DAVID: (Through interpreter) This is David. I'm calling, again, from Freemont, California and I'm speaking through an interpreter. I'm an expert on the cochlear implant and also on deaf culture. I am a cochlear implant expert where I've done much research. I'd like to point out that speech is not the link to human identity.
People think that if you don't speak that you're not human and that's how the misperception is that cochlear implant has become an over-marketed cure for something that deaf people don't want to cure. Deaf people have offered the world so much between American Sign Language, civil rights, and so forth.
And the concept that deaf people are limited in their own world is simply not true. Many deaf people move freely through the hearing world and the deaf world without the need of a cochlear implant. They speak fluently. As long as you have language accessibility the better that the deaf person will be in English. In other words, the more American Sign Language a child has, the better English they will have.
DAVID: (Through interpreter) And I'm not happy with the…
CONAN: Go ahead, I'm sorry. David, go ahead.
DAVID: (Through interpreter) I'm not happy with the movie - were you going to ask me a question? Go ahead.
CONAN: No, I was going to ask Peter a question, but if you've not finished your comment, please go ahead and finish it please.
DAVID: (Through interpreter) Ok. What I was going to say is that I'm not happy with how the Sound and Fury movie portrayed deaf culture. I think it's very biased. I think they're feeding on the general societal view and label that hearing is somehow so important it's paramount in terms of identity.
And from a deaf cultural perspective, inside of deaf culture, we're not split over cochlear implants themselves at all. We still resist the notion, that age-old concept that we need to fix us. This concept is a concept that's been around forever.
It's been around for all the generations. That deaf people need to be cured and fit into the hearing mold and the funny thing is that a cochlear implant device does not, in fact, eventually result in the person becoming a hearing person. The cochlear implant does not make you hearing.
CONAN: David, I'm sorry to interrupt but I wanted to give our guests a chance to respond to some of your very interesting statements. First, Peter Artinian, the film does portray you as a very successful deaf person who speaks sign language and interacts with the hearing world.
Mr. ARTINIAN: (Through interpreter) Yes, that's right. Yes. And I have access to communication. And I've grown up with hearing parents. I know what it's like. It's not an unfamiliar culture. It was an environment I grew up in. I feel very comfortable in both worlds.
We have sign language interpreters and Sorenson Video Phones, so now we can have direct communication, visually. There's more technology, the technology has provided more access for us. So yes I feel like there's not - so far, in my life, I can say I'm happy.
CONAN: Ok. Josh…
Mr. ARTINIAN: (Through interpreter) I have no bitterness, no disappointment.
CONAN: And Josh Aronson we just have a few seconds left with you, but this controversy clearly isn't over.
Mr. ARONSON: No, it's not over. And although in the Sound and Fury: Six Years Later, we interview Irene Leigh - who's a professor at Gallaudet University -who talks about the opening up of the deaf culture and the fact that many, many people in the deaf culture disagree with the last caller and accept the implant, as Peter and his wife have, and there's many, many second and third generation deaf people who are now getting implants and their children are. But there's still people who are very opposed to it as we've just heard.
CONAN: Thank you all very much. We thank David for his call. Josh Aronson, who's the executive producer and director of Sound and Fury, which was nominated for an Academy Award for Best Documentary. His follow-up is called Sound and Fury: Six Years Later. Peter Artinian also joined us in our bureau in New York and Lynnette Taylor was his interpreter. Our thanks to her. And especially, Heather Artinian. Good luck to you Heather.
Ms. ARTINIAN: Thank you.
CONAN: We'll be back with more after a short break. This is the TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: Today we're talking about cochlear implants. Michael Chorost wasn't born deaf but experienced substantial hearing loss when he was a child and a young adult. When he was 36 he lost his hearing completely. He decided to get a cochlear implant and wrote a book about that experience. It's called Rebuilt: My Journey Back To The Hearing World.
Michael Chorost joins us now from the studios of KQED, our member station in San Francisco. Welcome to TALK OF THE NATION.
Mr. MICHAEL CHOROST (Author, Rebuilt: My Journey Back To The Hearing World): Glad to be here.
CONAN: Michael, I think some people think of cochlear implant as some sort of a magical device that instantly provides complete fidelity. But I've also heard it described as having a metal head in your - a metal spoon in your head. And I'd like to play for listeners a rough computer simulation of what a cochlear might sound like.
Mr. CHOROST: Indeed let's hear it.
(Soundbite of computer simulated cochlear implant)
(Soundbite of TALK OF THE NATION theme music)
CONAN: And if the tune sounds familiar, that's, of course, the TALK OF THE NATION theme music. And, boy, just an approximation of it.
Mr. CHOROST: Well, I can't say that I could - to me that is not what the theme music sounds like. But, of course, this brings up a philosophical question. What does a simulation of a cochlear implant sound like through a cochlear implant? I've never found an answer to that particular question.
However, I often play simulations of cochlear implants, when I give talks, that give an idea of what speech sounds like filtered through a cochlear implant. And that's really a shock to my audiences, because they realize that a cochlear implant gives a dramatically reduced frequency spectrum response of the world. It gives you the contours of speech, but much less the individual frequencies. So, like you pick out the subtle differences between tones - that's why music sounds so terrible through many cochlear implants.
CONAN: It also suggests that our brains are wonderful instruments if they can take that diminished signal and interpret it.
Mr. CHOROST: It absolutely does. And the way I like to think of it is, what you're doing is installing a small computer and hooking up to a far more powerful computer - the human brain. You can make use of some very minimal information to get a complete picture. Which is what I do every moment of every conversation.
CONAN: I wonder, you used to be able to hear and then you lost your hearing and became profoundly deaf. What was it like when you first heard again with your cochlear implant?
Mr. CHOROST: It was a tremendous shock. I had spent my entire hearing life hearing through hearing aids, so I expected that a cochlear implant would sound like a hearing aid, only worse. I was not prepared for the fact that it would sound totally different. I could hear environmental sounds much better than I could with hearing aids. On the other hand, speech sounded like gibberish. So, the auditory world became effectively a photographic negative. I will never forget that day when my implant was first activated, and what I heard was so utterly different than what I had expected.
CONAN: In a way, you had a choice to make when you lost your hearing. You could find a way through cochlear implant to be part of the hearing world, or you could learn American Sign Language and become part of the deaf culture.
Mr. CHOROST: Indeed I did have that choice and, you know, this brings us to a very charged and painful issue within the entire deaf community of how people make that choice. For me, the choice was actually relatively easy, as my parents brought me up as a hearing person. A number of callers have alluded to the fact that 90 percent of deaf children are born to hearing parents, the actual figure is 96 percent. That's from Gaulladet's own research.
So the vast majority are children born to parents with no knowledge of American Sign Language were de-signed deaf culture. That's how I'm brought up. My parents do not use sign language. Well, enough with hearing aids. I began to learn English more or less normally. So when I went deaf pretending, which happened one day on July 7th, 2001, what I've wanted was my life back as a hearing person. I did not seriously consider going into the signing deaf community, although, if cochlear implants had not existed, that's exactly what I would have done.
CONAN: Let's get a caller on the line. This is Barbara. Barbara's calling us from San Antonio in Texas.
BARBARA (Caller): Hi, I'm really excited to hear dialogue being held about this because I have a 72-year-old mother who was the recipient of cochlear implants about two years ago. And she, as well as the speaker now, was part of the hearing community through a hearing aid. She suffered a blow to her head, which ultimately resulted in profound deafness.
And she is facing the same challenges, as well as our entire family, because at the time that the cochlear implant was offered to her through Medicaid, I don't believed it was properly explained that this was indeed a rewiring of brain rather than a hearing device.
Now, we're all faced with the challenge of how to re-teach her brain on what sound means as signaled through the brainwaves. We have very little support. No real advice from the doctor who actually performed the surgery as to what kind of tools and resources can be tapped into so that the family becomes part of the support group to help retrain her brain to hear.
Mr. CHOROST: Now, let me just point out there are excellent resources on the Web. There is a group called the John Tracy clinic, and you can find that on a Google search, that has abundant resources to help you teach your child at home so as essential listening skills. Let me ask you a question, how old is your child now?
BARBARA: No, she's not a child. She's 72-year-old woman, and -
Mr. CHOROST: Oh.
BARBARA: To complex the situation a little bit more, she's also bilingual. So we're doing with the retraining of the brain to interpret sound waves in English and in Spanish with very little socially friendly tools to do so, just like the filmmaker was commenting on, as far as like captioning and things like that. So it's compounded and it's a very complex situation. What I wanted -
CONAN: I suspected the situation, Michael Chorost is going to be coming up more and more as older people get these devices, because a lot of hearing lost amongst people of the baby boomers?
BARBARA: That's right. And especially when you're dealing with Medicaid and things of that sort.
BARBARA: What I wanted to point, and you know, I'm really happy to hear that it's working for a certain population. But on the downside, you're dealing with some pretty complex issues that arise in the form of depression and people feeling hopeless and helpless. And we have no guidance as to how to address the situation to make it better and make it a learning experience.
Mr. CHOROST: Yes, indeed. Let me point out that a cochlear implant is by no means a magic pill that gives you normal hearing. That's by no means the case. I had to spend months retraining my brain how to hear all over again, and that is a very difficult, very complex process.
Mr. CHOROST: And it's unfortunate that you're not getting the support that you need to do it, because that is essential to make the process work.
CONAN: Maybe the support should be made part of the whole procedure. It's not complete without it. Barbara, thanks very much for the call, and wish your mother -
BARBARA: Thank you so much for the dialogue.
CONAN: We wish your mother the best of luck.
BARBARA: I appreciate that. Thank you so much.
CONAN: Bye-bye. We have a caller now on the line from Sweden. Richard is calling us from Sweden. Richard, welcome to TALK OF THE NATION.
RICHARD (Caller): Welcome. To a whole world of interesting things, I know you've covered deafness in the past.
RICHARD: I'm an anthropologist. I've worked in Nicaragua, where technology isn't as accessible. And I also worked in the U.S. And now, I'm here in Sweden, studying practices in a country that has national health that ends up providing cochlear implants to many people who couldn't afford to get them in the U.S.
And as I've seen over the last two hours and what we've seen a little last week at Gallaudet is that at the heart of so much of this is that we really need to appreciate it's a social thing as much as a technical issue. Access doesn't just mean providing classes to deaf people, but it means a larger understanding of what it means to be a member of the society.
Much of what we deal with focuses on the psychological issues of an individual. And we don't think about - individuals are actually part of systems, families, communities, you know, universities. And the real thing that we haven't been spending enough time on is the social angle on all of this. This program's a welcome relief to that.
CONAN: Well, thank you for that. But Michael Chorost, I think that's a lot of what your book is about?
Mr. CHOROST: Yes, it is. I was very fortunate, although my mother is actually an audiologist. So she already knew a tremendous amount about cochlear implants. I remember two or three days after my device was activated, I e-mailed my mom saying I don't believe this thing is working right. The surgeon can't have put the electrodes in right. This sounds so terrible. And my mother was able to reassure me and explained that what I was going through was normal. And without that social support, it is a very difficult world indeed.
RICHARD: I think one of the things that we also run into trouble with, and I guess as an anthropologist I would think this way, is that we think of language as a whole separate thing, and we think of maybe even hearing as a separate thing in cultures over there, and we forget how much everything is really intertwined. When you're using language, you have to have cultural information in order to use any particular language successfully.
In order to use hearing, you're socialized into hearing as an infant, normally. And as we see with many of these people who did get cochlear implants, you have to get socialized into the meaning of the sound environment, whether it's reintroduced or introduced for the first time.
CONAN: Even, I think, the way facial expressions are interpreted.
RICHARD: Oh, yeah. In fact, that changes culturally. When I was in Nicaragua, I would sometimes use facial expressions at any sulkers who would know where, you know, who, what, when or why questions, or that sort of thing, and then Nicaraguans thought I was furious at somebody. They don't use the same expressions.
CONAN: Richard, thanks very much for the call, we appreciate it.
RICHARD: Okay, great.
CONAN: We're talking today with Michael Chorost, author of Rebuilt: My Journey Back to the Hearing World. You're listening to TALK OF THE NATION, from NPR News.
And let's talk now with Daniel. Daniel is calling us from Davis in California.
DANIEL (Caller): Hello.
CONAN: Hello, Daniel, go ahead.
DANIEL: Hi. Well, first off, let me mention something for your previous caller, Barbara in Austin.
CONAN: I did my undergraduate work at U.T. Dallas, which works intensively with something called the Collier Center.
CONAN: I think she's actually in San Antonio, but go ahead.
DANIEL: Right, but it's Texas. And the Collier Center implants a large amount of cochlear implants. They're responsible for many implants around the world, so she might look them up to see if they have any resources in the Texas area to help her out.
DANIEL: Okay, anyway, the thing I wanted to mention is I'm a graduate student at Davis, and I'm currently becoming a vision scientist to go into the visual prosthetics world. And I wanted to point out that the issues that you're bringing up today with regards to cochlear implants are timely and if anything, they're going to become bigger issues in the future as we develop these similar devices for the visual - the blind community. They're going to have to start facing the same issues and addressing whether or not they actually want to deal with a visual prosthetic or continue to be blind. They also have a very rich, deep culture that is under appreciated by the general public.
CONAN: We talked about that with the author of a book called KAKAI, about his experience of going blind, macular degeneration. But please, Michael Chorost, go ahead.
Mr. CHOROST: Yeah, I think it's a fascinating issue that you bring up, because in fact, the core technology of cochlear implants is in part a great inspiration to the development of retinal implants.
Cochlear implants is essentially a neuro stimulator. It stimulates nerve endings inside the body. And a retinal implant is also a neuro stimulator, it just stimulates a different set of nerves. So the core technology is actually being ported over in some case in the development of retinal implants. But people who get retinal implants will by no means have normal vision. They will have to learn how to interpret what looks like this bizarrely meaningless set of blobs and lights and lines. It's going to look nothing like what the normally sighted people see.
So I was thinking that once the first set of people who've tend to blimp in to get retinal implants, their mentors will have to be deaf people, because we're used to interpreting narrow input in that manner.
CONAN: That's pretty interesting. Well, what do you think, Daniel?
DANIEL: I think that's dead on. We're working on getting the visual prosthetics into people, but they're not going to be seeing like we see for a long time, if ever.
CONAN: Yet, one thing that does become clear, Michael Chorost, is that despite the limitations of this technology now, technology is doing nothing but getting better.
Mr. CHOROST: It is absolutely getting better. The software is improving constantly. A cochlear implant is a computer. It's a computer that's implanted in your head. And like any computer, it can be upgraded. There is a new generation of software that Advance Bionics, the company that made my implants, has made. It's called the harmony system. And it actually creates seven virtual electrodes in between every physical electrode to give better frequency resolution. If that music simulation you've played earlier, if you played something similar in that system, it would sound quite a bit better. It would sound sharper, and it would sound clearer.
There is another way in which implants are getting better. The majority of people, there are about 100,000 cochlear implant users in the world. At this point, about 3,000 of them have an implant on both ears, about three percent. And research shows that people with two implants are substantially better at hearing noise and in localizing sound than people like myself who have only one implant. In other words, two ears are better than one.
CONAN: That's interesting. Daniel, thanks very much for the call.
DANIEL: Thank you very much.
CONAN: Bye-bye. Now, let's see if we can get last caller in. This is Erin. Erin, calling from Glen Cove in New York.
ERIN (Caller): Yeah, hello.
CONAN: Hi, Erin.
ERIN: Hi, this is Erin. I'm actually Heather Artinian's best friend.
CONAN: Oh, that's great.
ERIN: We're like practically sisters.
Mr. CHOROST: Wow. That's amazing.
CONAN: You were listening to her on the radio today?
ERIN: Yes. She was so excited to come and she told me all about it. And I went on your Web site, I e-mailed you four times and called like a million times, and I finally got through.
CONAN: Well, Erin, tell Heather that she was awesome. Okay.
ERIN: Yeah, I definitely will. I just wanted to say that the cochlear implant is a very good invention in my opinion. Because without that, Heather and I would've never have met. And she fits in with the hearing roads and so many kids in our school. Everyone loves here. She fits in perfectly. It's just an amazing invention, and I really think it like totally affected her life in a great way.
CONAN: Erin, thanks very much. Appreciate it.
ERIN: Thank you.
CONAN: So long. Michael Chorost, thank you for joining us today.
Mr. CHOROST: It's been my pleasure.
CONAN: Michael Chorost, the author of Rebuilt: My Journey Back to the Hearing World. He joined us from the studios of KQED in San Francisco.
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