NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
Gallaudet University is in crisis. Since last Thursday, the world's only university dedicated to deaf and hard of hearing has been boiling. A protest escalated so far that angry students are blocking the gates of the school, and it's effectively shut down.
We planned to talk today with Gallaudet University President I. King Jordan amid the controversy, primarily over the choice of his successor. President Jordan decided to cancel and issued this statement last night:
"I deeply regret that I'm unable to be on TALK OF THE NATION tomorrow. However," he wrote, "the current situation on the Gallaudet campus is critical and requires my full attention. I truly look forward to the opportunity to talk about Gallaudet and my long and wonderful relationship with it, and I hope that I'll have the opportunity to do so on the program in the not too distant future."
Well, we hope so too. But we still plan to talk about this unique institution today. Gallaudet is more than a school to many of its students, and more than a beloved alma mater to its graduates. The passions on all sides of today's protest tell a deeper story. Almost 20 years ago, a civil rights movement swept the campus, and as a direct result, I. King Jordan became the first deaf president and helped to build Gallaudet into a symbol of progress and to an inspiration for deaf people worldwide.
Today, we'd like to open a window on that community, get a sense of Gallaudet University's history and legacy and what makes this school — a relatively small institution of some 1,100 students — such an important place. And, of course, we'll look at the current crisis on campus, too.
Today, we want Gallaudet students and alumni, other deaf people and their family members to be our guests. Call and tell us about the school's meaning and value to the deaf community. We're providing real time captioning of this program at our Web site. For more information on the captioning, go to npr.org/deafculture — deaf culture is all one word. The telephone is 800-989- 8255. That's 800-989-TALK. E-mail, email@example.com.
And with me here in the studio is Joseph Shapiro, an NPR reporter who's been covering the deaf community since the protest on the Gallaudet campus in 1988.
Joe, nice to have you on the program today.
JOSEPH SHAPIRO: Thank you, Neal.
CONAN: Tell us a little bit about that moment in 1988 that swept the university, the biggest protest until today.
SHAPIRO: That was an important moment. It was the — it was an expression of deaf pride. The issue was pretty clear back then: shouldn't a school that prides itself on educating deaf students have a president who's deaf? And Gallaudet had never had one before. Students demanded that it was time to have one. They closed down the gates of the university, closed down the university - much as we're seeing today. And finally, the board of trustees relented and chose I. King Jordan, who was a popular dean. And this became a great moment, a glorious moment in sort of the history of deaf people in this country.
CONAN: And this debate and this protest today seems to echo a lot of what happened in 1988, yet the issue isn't quite so clear.
SHAPIRO: No. So in 1988, it was a clear issue. This is not very clear at all because this is — because the Board of Trustees met last spring and they chose a woman to be the next president — a woman name Jane Fernandes, and she is deaf. She's been a long-time administrator at Gallaudet. She's deaf. She was born deaf. She, however, grew up in an oral tradition, learning to read lips and speak. She was 23 when she started to learn sign. She became a scholar of American Sign Language. But I think some still hold that against her. She had a long history at Gallaudet and she probably — and she made decisions that were unpopular. So she came with a lot more baggage and — but the issue was not so clear as it was in ‘88.
CONAN: Mm-hmm. Briefly, when you talk to people there — and you have over many years — what do they tell you why is Gallaudet so important?
SHAPIRO: It's a special place because Gallaudet is the center of deaf culture and deaf history. If you grew up in a deaf family, chances are your mother went to Gallaudet. Your father went to Gallaudet. Probably your mother and father met at Gallaudet. You may wish that someday you may think that your kids will go to Gallaudet. It's the center of deaf education, but also deaf culture.
CONAN: Mm-hmm. There are — deaf culture is unlike the blind, who may go to institutions where they learn how to maneuver around. Deaf people go to school together, and they go to schools around the country. And Gallaudet is sort of the apex of that pyramid. Isn't it?
SHAPIRO: Well, there have been the schools for the blind and for deaf people. And actually, those schools, the number of them are going down. But there is more of a history in the deaf community. And Gallaudet is a special place where they often come together. It's a — people come together because they have this thing in common, that they communicate by sign.
CONAN: Mm-hmm. And briefly, tell us a little bit about the history of the school. You were kind enough to usher me over there earlier today, and I noticed that it was founded in the middle of the Civil War.
SHAPIRO: Abraham Lincoln wrote the charter, 1864. You saw some beautiful campus, old buildings…
CONAN: Yes, indeed.
SHAPIRO: …on a little hill surrounded and a gated — iron gate around the campus. Beautiful campus. But as you said, it started 1864. There were no schools for educating deaf people in this country. If somebody was deaf, they did not get educated. If their family was wealthy, they sent them to Europe. And Thomas Gallaudet decided that he wanted to change that. He actually went to Europe and brought a French educator to this country to start that college.
CONAN: And how is it funded?
SHAPIRO: Largely, it gets most of its funding from Congress — unlike other colleges and universities, it gets about 70 percent of its funding from Congress.
CONAN: Let's get some listeners involved in the conversation. Again, we're hoping that Gallaudet students, Gallaudet alumni, family of deaf people will give us a call and tell us about this institution and why it's so important to their community.
Our number is 800-989-8255. That's 800-989-TALK. The e-mail address is firstname.lastname@example.org.
Let's begin with Joanne(ph). Joanne is calling us from Encinitas in California.
JOANNE (Caller): Hi, Neal.
JOANNE: Thank you so much for taking my call.
JOANNE: I am a mother of a daughter who's deaf, who's attending Gallaudet. She's a freshman. I'm extremely upset and frustrated about what's going on, trying to stay in touch with my daughter via texting over her Sidekick. She's nervous. She's scared. She feels and the students feel that they just don't have equal participation in the selection of this president and in the direction that Gallaudet needs to go. Gallaudet is the Mecca of the deaf world. We sent her there. She's adopted from Ethiopia and we tried to give her the best education we could, and that's why she's at Gallaudet. And…
CONAN: Mm-hmm. When did you first find out about Gallaudet, and what kind of place did it hold for the people who were telling you about it?
JOANNE: I first learned of Gallaudet in 1988 when, you know, living in the United States when my son was born in '88 and watching on the news the deaf students' protest. We later adopted my daughter in 1990, and all throughout raising her you meet deaf adults who have at some point — like I said, it's the Mecca of the deaf world — have been to Gallaudet. And I had always hoped that she would graduate from high school — which she did, we're very proud to say - but she did not pass the English portion of the California exit exam because it doesn't take into consideration that English is the second language for deaf people. American Sign Language is their primary language.
CONAN: Joanne, thanks very much for the call. We appreciate it.
CONAN: Bye-bye. And there are, Joe Shapiro, most of the deaf children in this country are the children of hearing parents, is that not true?
SHAPIRO: You know what? I'm not sure of the exact figure, but I think that's probably right.
CONAN: All right. Let's get another caller on the line. We'll turn to Angela. Angela's calling us from Pennsylvania.
ANGELA (Caller): Hello, yes. I happen to be deaf — partially deaf right now - and it's increasing. It runs in my family, but I'll say this: ten percent of the American population is deaf or has some form of deafness. This is not being addressed appropriately. We need to have more Gallaudets. We need to have more communication skills for people who are hearing impaired or deaf, not less. And they should have more Gallaudets around the country — not only teaching sign language or American Sign Language, sign language as a whole, and that should be spread as early as possible to get to the younger folks. That's my comment.
CONAN: And Angela, do you sign and when did you learn?
ANGELA: Well, I don't really sign much. I've been learning sign language. I'm teaching my daughter. We're actually taking courses on it through American Sign Language, but there's also a different kind of sign language throughout the world. I think we need to put this into the schools, and I actually think we need to start using — having sign language as part of our curriculum. Because when you look at ten percent of the American population right now that's deaf, that's how many people? That's about 28 million people right now.
Okay, and deafness is actually on the rise because of, you know, we have all these loud music, loud speakers and things that people are using and that – actually they're finding genetic causes for deafness. None of this is being addressed appropriately in either the schools or in the universities, including the medical schools. And we really need to have leadership coming from places like Gallaudet. We don't need to have a lot of controversy about Gallaudet. We need more Gallaudet.
CONAN: Angela, thanks very much for the call. We appreciate it. Good luck to you. And Joe Shapiro, is she right on that ten percent figure?
SHAPIRO: I don't think it's ten percent our deaf. She's talking about people who have hearing loss, so it's not all those people would be people who'd use sign language. But sign language is something that more colleges are starting to offer as a language as something you can take to meet language requirements. There is a growing interest in sign language.
CONAN: Mm-hmm. And in the idea — Gallaudet University has 1,100 students. It's not a big place at all.
SHAPIRO: Eleven, 1,200 students, plus, by the way, 500 graduate students. So about 1,700. So it's a small place.
CONAN: Even so, it's not rivaling Ohio State University, which we visited the other day.
CONAN: Is there a prospect for more demand for, you know, higher education for deaf and hard of hearing students?
SHAPIRO: No, actually the population of Gallaudet is down from 1988. There are fewer deaf students, deaf people of that age, and also more opportunities for deaf people. They can go now to — it's easier to go to a regular university. The Gallaudet student protest in 1988 actually, I think, led to that. It led to the passage of federal disability civil rights law that now requires — makes it very clear that colleges, all colleges, have a requirement to provide sign language interpreters for any deaf student who wants to go to any college - Ohio State or any other school.
I. King Jordan, by the way, helped push that law. He was a key proponent of it, so there are many opportunities now for deaf people to go, not just a deaf school like Gallaudet.
CONAN: And before we get flooded with e-mails from Columbus, we know it's The Ohio State University. We're talking with NPR's Joe Shapiro about Gallaudet University, its role in the deaf community and the protests that have shut down the school this week. If you'd like to join the conversation: 800-989-8255, 800-989-TALK. E-mail us, email@example.com. If you're expecting to hear I. King Jordan on the program, he canceled due to the protest. I'm Neal Conan. You're listening to TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington. We're talking today about Gallaudet University. The school holds a special place in the deaf community, in the United States and around the world. We had plan to talk with Gallaudet president I. King Jordan this hour, but given the ongoing protest on the campus, he sent his regrets in a statement last night. He said the current situation at Gallaudet requires his full attention and hopes to join us in the future.
Instead, we want Gallaudet students and alumni, other deaf people and their family members to be our guests. What's this school's meaning to you and its value to the deaf community? Give us a call: 800-989-8255, 800-989-TALK. We never get on as many calls as we'd like, so today we'll launch a comments page after the program. You can find it at npr.org/deafculture. Deaf culture is all one word. We'll take your comments until 5:00 p.m. Eastern Time, so write to us at firstname.lastname@example.org. That's the e-mail address.
Those of you who are listening to this program who have access to VRS — those of you who are deaf who are getting this relayed to you video, you're welcome to call as well. So we'll be happy to take your calls. Joe Shapiro is with me here in Studio 3A. He's the author of No Pity: People with Disabilities Forging a New Civil Rights Movement. He's covered Gallaudet for nearly two decades. And let's see if we can get another caller on the line. This is Victor. Victor's calling us from Washington, D.C.
VICTOR (Caller): Yes, sir. My name is Victor. My wife and I just moved to Gallaudet University this past weekend, and all this broke out on Wednesday, I believe — yesterday. Last night, you know, we had no food in our refrigerator. We had to negotiate our way out with our vehicle. The protestors told us that we would not be allowed back on campus with our vehicle, telling us we had to, you know, walk back to the campus with our bags. I tried to talk to them. I tried to explain our situation.
They didn't want to hear it. Finally, we were forced to call D.C. police to let us back in. And, I mean, I totally respect their right to protest. Everyone has that right in the U.S., but holding the university under siege — my, you know, I have a doctor's appointment tonight. What am I going to do, you know? Go to the doctor, come back and call D.C. police again to let me in to where I legally reside?
CONAN: Are you connected with the university now?
VICTOR: No. I mean, I live there. My wife is a student there, and we just moved this weekend. And we've been e-mailing the administration, and we hope to get some sort of answer as to what we should do. I mean, we walk on campus and we're scared. I mean, we're literally scared for our safety, and there's a lot of emotion going on. And we want a peaceful resolution, but we want it now.
CONAN: Victor, thanks very much for the call. Good luck.
VICTOR: Thank you.
CONAN: And Joe Shapiro, Victor's not alone.
SHAPIRO: No he's not, and that shows why this is so painful for people who've watched Gallaudet — watched that campus for a long time because — and also why it's so hard for King Jordan and the administration to try to figure this out because the students — it's not clear exactly what percentage of the school they represent — the students who were protesting, the students and faculty. It's a — the place is very divided right now, and there's a lot of passion, a lot of anger and a lot of hard feelings. And it's hard to see how it's going to heal easily.
CONAN: This is supposed to be exam week.
SHAPIRO: Midterms, yeah.
CONAN: Some statements were issued last night by the school administration which suggest that they're taking a harder line.
SHAPIRO: Yes, they were frustrated. The administration had negotiated with the leader of the student government. They thought they had an agreement to stop the protest this week and allow the classes and exams to continue, and then after the thought they had a signed agreement it fell apart. They're trying to figure out how to negotiate, how to talk to them, but it — and they haven't gotten anywhere. And I think it's because the protestors are firm about one thing. They want Jane Fernandes to not become the new president, and that's something that neither side will budge on.
CONAN: Let's get another caller in — Betsy. Betsy's with us from Garner, North Carolina.
BETSY (Caller): Oh, hello.
BETSY: My son is deaf. He's 23, and he and his wife are both deaf. They attend another school for the deaf. It's actually located in Rochester, New York. A lot of technically oriented deaf kids go there. It's called NTID: National Technical Institute for the Deaf.
It's one of the colleges of Rochester. But the point that I wanted to make was that it's very hard for hearing people to understand how deep this concept of deaf culture is. Many deaf people do not see themselves as a disability group. They see themselves as a language minority, and they have very strong ownership over this culture.
It's hard to understand the passion and the extreme need to be recognized as a group and as individuals. And many deaf people feel that their voice is not heard. And so when they do get an opportunity to protest or to make a statement, they often are very passionate about it. And hearing people say, well, why are you going off the deep end like this? They don't understand how often deaf people have not been heard. And it's a difficulty situation, but I think it's very hard for hearing people to understand the depth of the passion there.
CONAN: Joe, we were talking with some students today — you were talking, I was listening — and really, they portrayed this very much still as a civil rights issue.
SHAPIRO: As a civil rights issue. We should be listened to. This is an issue of respect. I guess that's it. And that's what 1988 was about. It was a statement of deaf pride, and Gallaudet was the one place where people did listen to the deaf community. That's one place where they could be heard, and so part of what's, again, painful about seeing what we've seen this last week is that these sort of heroes of the deaf civil rights movement.
I. King Jordan really became the symbol. He came to Gallaudet in 1988. He said – famously said — this proves, the fact that I am now president proves that deaf people can do anything but hear. And that really inspired deaf people all over the country to expect more, to feel they could do more, to not feel they had to do traditional jobs — teach other deaf people. Those students at Gallaudet today have much higher expectations because of the, sort of, civil rights' talk that we heard from I. King Jordan. They feel they can be lawyers. They feel they can be doctors. We talked to a student today who wants to go into the Peace Corps. They don't accept the limits anymore.
CONAN: Betsy, what's your son studying?
BETSY: My son is in a program for computer animation, and his wife is in an arts program. They started with technical computer graphics training there, and there are engineers and lots of different technical programs at NTID. It's one of the colleges of the university. So their support comes through that college, but they can take any of the classes that are IT.
CONAN: Okay, Betsy. We wish them the best of luck. Thanks very much for the call.
BETSY: Thank you for letting me speak to you.
CONAN: Sure. Let's go now to Abraham. Abraham is calling from Toledo.
ABRAHAM (Caller): How you doing?
ABRAHAM: I'm actually a child of a deaf family, and my family's been affiliated with Gallaudet since the ‘60s. I've had a sister graduate there. I've got a couple of nieces and nephews that are currently down there now, and a comment the '88 thing, when that broke in the news — as soon as it broke, I knew it was a done deal.
They were going to get what they want. And your previous caller made a comment about the deaf culture and how strongly they feel about it, and that's where a lot of it resides. Gallaudet is the center of education for the deaf community, but it's also a big contributor to the culture. And more so that any other university, the students want to have more of an input in direction of where their university's going.
CONAN: And one of the things, Joe Shapiro, that the students we talked to today were telling us was that the deaf community is a much more inclusive community than we in the hearing world are accustomed to. And they feel that they have a right to have a stronger voice than students generally have in the selection of the school's president.
ABRAHAM: Right. And to be fair, by the way, to the administration, they did involve students. I believe students were on the selection committee and they also — they had these open forums where the finalists came. They spoke to the students. The students had a chance to ask questions, and those finalists were judged by how they interacted with those students.
CONAN: Abraham, you said many of your family members went there. I assume deafness runs in your family.
ABRAHAM: Yes, it is. It's hereditary. In fact, I'm the only hearing child in my immediate family, and I have some nieces and nephews that are deaf and some that are hearing.
CONAN: So you grew up bilingual.
ABRAHAM: Yes, I did. In fact, American Sign Language was my first language. I actually learned to communicate that way first before I actually learned to speak. And I remember as a child spending many visits down to Gallaudet as my sister and brothers were going there, and now my nieces and nephews are there now, too.
CONAN: So you have a sort of a foot in both camps, if you will?
ABRAHAM: Oh, most definitely. I've grown up in a deaf culture, and, you know, also living in the hearing world, as most people referred to it as. And I do see the conflicts, and to be quite honest with you, there's even been some conflicts between my sister and I with respect to the hearing world versus the deaf world. So, yeah, I've lived on both sides of it, like I can understand both views very clearly.
CONAN: All right. Abraham, thanks very much for the call.
ABRAHAM: Thank you.
CONAN: Bye-bye. Here's an e-mail. These are e-mail questions from Cesar(ph) and Kelsey(ph).
First, this is Cesar: I attend Palmer High School in Colorado Springs, Colorado. I was wondering what happened to the Gallaudet population since 1988. Why has it decreased? Is it because of the controversy over the idea of having a hearing president? Could you explain this more? My friend, Kelsey, has a question also. But let Joe Shapiro answer the first one.
SHAPIRO: All right. Well, the — probably actually it was at 1988, there was actually what they call the rubella bulge. So, a lot of people who became deaf as a result of their mother's contracting…
CONAN: German measles.
SHAPIRO: …German measles. Right. So, and they became of college age around that time, 1988. So there are a lot then, and that was the peak of the rubella bulge. Fall of 1988, there were 2,100 students at Gallaudet, and now there's 1,700. It actually went down for a while and has gone up.
But part of it is that they're — again, there are more options for places to go. It's easier to go to a local university or any other university if you are a deaf person now.
CONAN: And that seem to address Kelsey's question. She wrote also from Colorado Springs: I'd like to also know why fewer deaf students are going to Gallaudet University. I don't understand why less deaf students want to be involved with deaf culture. Deaf students can go to NID or Gallaudet, but more choose to regular colleges and not experience deaf culture. Why is that?
SHAPIRO: But I think for many people — well, they're trying to balance. They need to be — they're trying to be in both worlds if you're deaf. You want to know your deaf culture. Gallaudet is often the place you go to learn that.
SHAPIRO: But you also know that eventually you have to — probably leave that and get into the hearing world. And so, often students will — today are much more likely to say I'm going to go for my undergraduate here, and I'm going to the deaf school for my graduate education or vice versa.
CONAN: We're talking to today with NPR's Joe Shapiro, who's been covering protests at Gallaudet University going back to 1988. We shouldn't suggest that they've been going on constantly since then. There was a big one in 1988. There's another one going on today. We had hoped to speak with I. King Jordan, the president of Gallaudet University today for an exit interview. Because of the crisis on campus, he declined to leave the situation and come over here to Studio 3A.
I'm Neal Conan. You're listening to TALK OF THE NATION from NPR News.
And let's get another caller on. This is Candice. Candice calling us from New York City.
CANDICE (Caller): Yes.
CONAN: Go ahead, please. Go ahead, Candice.
CANDICE: Hi. I was calling in because I wanted to talk about what Gallaudet has meant in my family. I adopted a child that I didn't know had a hearing impairment, and found out that he had a hearing impairment and didn't know what to do, but called up Gallaudet because I knew it was the university for the deaf and they reached out to us — a hearing family — and helped us in so many ways.
My child went to the parent/infant program there and to the elementary school. And they get us involved in outreach for physical therapy, found out that my child has cerebral palsy. And they did everything they could to — the people there to kind of hold our hands all underway and to include us in their culture. And I just thought it was just a really beautiful thing how helpful and wonderful the deaf community was in reaching out and letting us — these hearing parents — be a part of that community and including our son in it in every way that they possibly could.
CONAN: And how's your son doing?
CANDICE: He's doing really well. He has auditory neuropathy, and, you know, we work with that. We still do some sign with them and try to, you know, try to deal with his hearing issues. It's very hard to be a part of, you know, to have a child who has a different first language than you do and to kind of work with that. So, you know, so we struggle. But he's doing fabulously.
CONAN: And how are you doing on ASL?
CANDICE: I'm not as good as I would like to be, but, you know, fortunately we have a lot of people in our lives who are good and who try to help us.
CONAN: Candice, best of luck to you.
CANDICE: Thank you very much.
CONAN: Let's talk now with — this will be Jenny. And, Jenny is calling from Fremont, California.
JENNY (Caller): (Through Interpreter) Yes. Hi.
JENNY: (Through Interpreter) Hello. Yes, I just wanted to let you know that I'm a mother of three — three children at Gallaudet, and also an aunt of one niece at Gallaudet University. And, I'm concerned about the students' strike at Gallaudet. I really support the students. You know, their strike is for social justice. And I really cherish, you know, the Gallaudet University. And it's the only liberal art school for the deaf and it's well recognized, you know, nationally, internally.
And myself, I'm from the alumni, too — there at Gallaudet University — and because of the culture, you know, complete access to communication, you know, and the deaf world is all connected. But now I'm looking and said why? Why is the president at Gallaudet, you know — one moment, let me get clarification. Yes, and his, you know, administrator, you know, why are they letting — you know, their strike to continue to increase. And want them to stop and listen to the students. And also…
CONAN: I think we should explain that Jenny is speaking to us through an interpreter who we're hearing. She is deaf.
JENNY: (Through interpreter) Yes. And — so, let me go ahead and finish explaining. You want me to go ahead and finish continuing?
CONAN: Yes, would you please?
JENNY: (Through interpreter) Okay. One moment, please. And also myself, I am a deaf mother. Yes, that's correct. And also, for 10 years I've worked here at the California School for the Deaf in Fremont. And my children and a lot of students from our school and the teachers, they work here, you know, as a family — you know, education coordinator for the for the school for the deaf. And my three children and my niece are Gallaudet students today. Currently, they're Gallaudet students, and there's a lot of students from our school that go to Gallaudet University.
CONAN: Jenny, I'm afraid we're going to have to take a short break. Can I put you on hold and come back to you in two minutes?
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JENNY: (Through interpreter) Oh, yes. Okay.
CONAN: All right. I'm going to put you on hold. We're going to continue talking with Jenny. Oh! I hit the wrong button and just hang up on Jenny instead of putting her on hold. If she could please call back, we would appreciate it. (800)989-8255.
I'm Neal Conan. Mr. Clever will be back after the break. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington.
Today, we're wrapping up our conversation about Gallaudet University. We're also going to be talking in a few minutes about a new play in two languages – English and Sign — that looks at the deaf history of Martha's Vineyard, an island off the coast of Massachusetts.
Still with us is Joe Shapiro, an NPR reporter who's followed the events at Gallaudet University for years. And, Joe, we've been getting some e-mails from listeners curious to see what this protest is about, what the students find wrong, unacceptable — or at least some of the students — about the designated new president of Gallaudet University.
SHAPIRO: Their objections aren't always clearly defined, but I think part of it is that to be the president of Gallaudet is more than being a college president. You are sort of the president of the deaf world. You're the deaf world's ambassador to the hearing world. You're a symbol of what deaf people see as their own civil rights movement. So they expect the president of Gallaudet to be someone who's going to inspire, to be a leader, and a lot of these protesters feel that she's not up to that.
SHAPIRO: And then there are other objections to her — they feel that she's an experienced administrator, but there are people who will have not liked some of the things that she has done as Provost at Gallaudet. She also ran the program at Gallaudet where they have a school for every — kids from pre-K to high school. And, she ran that. She shook things up. She probably made some enemies there. She's not a charmer. She's not really charming. Somebody once described it — King Jordan's like Bill Clinton, and she's like Al Gore. Jordan is very charismatic. She's not.
One on one by the way, she's — when I interviewed her — she is very personable. She's bright. She's interesting. And people who — and many people who've worked with her closely, she has made defenders. But, she's not — she hasn't been able to win over the students. It was interesting. Last May, when the protest broke out, she tried to heal the university, and she — sort of bravely, I thought - got up everyday in the hall, actually, where the students took over the classroom building this week, and she got up on a stage and she took questions from people.
And she took all sorts of questions — hostile questions, nasty questions. She took them all. And, she was trying to win them over and she couldn't. But there's something a little school marmish I thought about her, because some would ask a question and they'd want to follow up and she'd say, no, now look. See, there's a long line. All those other people want to ask questions. Go to the end of the line and let them go. So, sometimes people say, oh, she's paternalistic. And there's a little bit of that temper…
CONAN: An issue that deaf people are sensitive to.
SHAPIRO: They are sensitive to. And, also, by the way, as provost, she had to discipline students, and there's some hurt feelings about some of that discipline.
CONAN: Despite my best efforts, we are able to get Jenny back on the phone. I apologize earlier for hitting the wrong button and hanging up on you. We appreciate the fact that you've taken the time to call back.
JENNY (Caller): (Through interpreter) Okay. Yes. Hello again. This is Jenny here.
JENNY: (Through interpreter) Yeah, I just wanted to answer your question before the advertisement. I just wanted to let you know why the students are protesting and why it continues to get stronger and stronger is because the students are wanting to send a clear message to the Gallaudet president and also the to administrator that they're not accepting the process.
They do not accept it. And they're wanting to meet with the two demands — have the two demands met. They have not listened yet. And I'm really wanting to see the board of trustees to take over and control the situation and to set up a meeting with the students and to listen and to take action.
CONAN: Let me just interrupt ask Joe Shapiro — the two demands, what are those?
SHAPIRO: Well, it's that Jane Fernandes not become president, and that the board of trustees re-open the search. So, the board of trustees has listened. King Jordan has listened. But if listening is accepting those demands, then they're saying look, this is what we can't do.
The board of trustees — by the way, this was kicked off, the current protest was kicked off because the board of trustees came back to town last week. And so the students protested to get their attention, and they did. The board of trustees, the administration of Gallaudet, has been talking to the students. But the one thing they say they won't do is tell Jane Fernandes that she can't be president, and the board of trustees has very firmly said we're not going to re-open the process. That's why were at loggerhead.
CONAN: Jenny, I did want to ask you. Parents like yourself, obviously, there's an enormously larger deaf culture outside Gallaudet that feels very strongly about Gallaudet — alumna like you. You're supporting the students, and are you helping them in this crisis?
JENNY: (Through interpreter) Yes. We — the alumni and also the parents here, we are all sending a message, you know, of our strong support and our agreement - yes, with the students, definitely. And, you know, we feel that, you know, the election of Jane Fernandes, that it's not reasonable, you know? And it's not a good match for our Gallaudet leader. And we also sent a letter to a variety of people including — and also sending funding — to the students to help them to continue on with the strike because the strike — the demands haven't been met. And we are still in agreement with the students on their strike over — you know, we feel that it's a wrong election process.
CONAN: Jenny, thank you very much. And again, I apologize for hitting the wrong button and hanging up on your earlier. Thanks very much for getting back to us, and we appreciate the call.
That was an interpreter speaking for Jenny, who is deaf. And here's an e-mail, this from Laura. I'm a student at Gallaudet living off-campus and unable to get on campus. I've just received word that J.F. is at the front gate addressing the students — that would be Jane Fernandes. So maybe we'll hear more about that later today on NPR News. We do have a reporter over there, so…
SHAPIRO: Right. And Jane Fernandes — they've locked down the university. She's been able to get onto campus. But King Jordan, the president, who — the president has a president's mansion on the campus, so here's there with the students. But other administrators, teachers, have not been able to get on the campus in the last two days.
CONAN: And again, if you tuned in hoping to hear King Jordan today, he was unable to make it to the studio to do the interview because of the crisis, which he felt he needed to devote his full attention to. We hope to have him on some time in the future after this is all resolved. Joe Shapiro, thank you very much for being with us today.
SHAPIRO: My pleasure.
CONAN: Joe Shapiro, an NPR reporter who's been covering the deaf community since 1988. In just a moment, we'll be talking about a new play about the deaf history of Martha's Vineyard.
Deaf Culture on Martha's Vineyard
NEAL CONAN, host:
In the history of deaf culture, Martha's Vineyard holds a special place. For more than 200 years, the island was home to one of the largest deaf communities in the country. But islanders never treated deafness as a disability. Instead, they created a sign language that everyone used: hearing and deaf.
A new play in development at the Martha's Vineyard Playhouse explores this era. This Island Alone recreates the harmony between the hearing and the deaf that used to exist, and the discord that ensues when the mainland intruded. For more, we go now to the co-writers, Adrian Blue and Catherine Rush. Adrian Blue is deaf and will communicate with us through an interpreter, Alec Lev. And welcome to you all.
Ms. CATHERINE RUSH (Playwright; Co-writer, This Island Alone): Thank you.
Ms. ADRIAN BLUE (Theater Director; Co-writer, This Island Alone): (Through interpreter): How you doing?
CONAN: And let me ask Adrian Blue. To begin with, the time you are writing about, almost — a large percentage of the people on Martha's Vineyard were fluent in two languages?
Ms. BLUE: (Through interpreter) They used sign language, and they spoke at the same time. It's questionable, the word fluent, but they were comfortable in both languages, communicating in both languages. They had a healthy attitude towards the entire situation. There was nothing there other than perhaps a linguistic barrier, which was broken through.
CONAN: I was reading a little bit about it today. Kids used to use sign behind their teacher's back. It was a pretty universal language.
Ms. BLUE: (Through interpreter) Well, yeah. I mean, but it's just like hearing kids writing notes back and forth to each other behind the teacher's back. It's the same thing.
CONAN: Sure. Now your play takes place at the general store. Why there?
Ms. RUSH: The general store was the place where the community met to talk and, obviously, to shop. But they got together and talked about the day and things that were happening and who'd moved in and who've moved out. So it's a very good place to set a play because a lot can happen.
CONAN: And the synopsis that I've read of your play suggests that a great deal of tension was inspired by a single question. What was it, and who asked it?
Ms. RUSH: The question was asked, and we don't know when the question was asked. But from oral histories, we know that an off-island newcomer came to a town meeting, and before a vote was taken, asked if deaf-mutes were allowed to vote. Deaf-mute was the term at the time, it wasn't politically incorrect — but asked if they were allowed to vote, and it caused quite a ruckus. The oral history — 50 years later, people were still angry about it.
CONAN: Now this — the sign language that was used at the time, it is not the American Sign Language that we're familiar with today.
Ms. BLUE: (Through interpreter) Exactly. It's not American Sign Language. However, it's kind of a blending of sign language and their own local signs. They might have some signs that were sort of homemade that became part of the language. Now those home signs are gone. We don't have those anymore.
CONAN: Could you describe those for us?
Ms. BLUE: (Through interpreter) Okay, well, they're older signs. You would made a hand shape — let's say one that look like what you'd use for a telephone, what people typically use to describe a telephone, you'd have that sort of thing. But remember, in the old days, you have a different kind of telephone, right? You have one piece that's help up to your ear and one microphone that's held up to your mouth. So the sign would become — imagine doing that. Imagine holding an old-time telephone up to your ear and mouth. That's one example.
CONAN: We're talking with playwright Adrian Blue and Catherine Rush about a new play that they're developing in Martha's Vineyard, Massachusetts, about that island's deaf history. And you're listening to TALK OF THE NATION from NPR News.
And let me ask you. This play is in two languages. It's not written, as I understand it, in English and translated to sign, nor vice versa, but written in both languages at the same time. At let me ask you, Catherine Rush. First of all, how did you do that?
(Soundbite of laughter)
Ms. RUSH: Well, first of all, it's — sign language, American Sign Language - which this play is not in, but is influenced by — is not a written language. So the play itself is written in English, the script is written in English. However, while we're in rehearsal process, Adrian is responsible for writing the sign-language portion of the play, and we work with the actors to develop that.
One of the things that makes it unusual is that you cannot sign American Sign Language and speak English at the same time. However, on Martha's Vineyard, they did sign and speak at the same time. So what we are developing is a type of language that we think might have existed in Martha's Vineyard that is gestural, but is also linguistically clear so that a deaf audience that would be watching it would be completely clear about what's happening on the stage and a part of the action on the stage just equally with the hearing audience.
CONAN: Yet Adrian Blue, obviously, part of the play is in English, too. Aren't the deaf members of the audience going to be frustrated by their inability to understand the English?
Ms. BLUE: (Through interpreter) Well, what's going to happen here is — I'll tell you that I'm deaf, okay? I'm profoundly deaf, I'm culturally deaf, and I'm confident that if what we see on stage is clear to me, then the rest of the people in my world will understand it as well.
CONAN: Why don't you just have an interpreter in front, translating the English?
Ms. BLUE: (Through interpreter) Yeah, that becomes — I don't know. For me, I've never really liked watching an interpreted play in that way. I don't really like watching a captioned play or something like that. I want to see the truth of what's going on in an intellectual way, put into both languages happening simultaneously. Best thing to do? Come see the show. It's going to be on October 20th and October 21st. It's going to be 7:00, and it's going to be at the Vineyard Playhouse on Martha's Vineyard.
CONAN: Let me ask you, Catherine Rush, what happened to this world that you describe in the play?
Ms. RUSH: In the play, we take, you know, we squeeze time to the climax we find of a big change that took place at the Vineyard, or on the Vineyard. You had the whaling community fall apart, and you had the farming community becoming less and less productive as people moved in for holidays and more off-islanders came in. Also, it changed the genetic pool. So things started to change. And as off-islanders came on, they brought all of their ideas. And for the first time, the community found themselves in conflict from those influences.
CONAN: In conflict on the issue of deafness.
Ms. RUSH: What we put — yeah, to some extent. What we show in the play is that everybody's getting along fine until this guy comes in and asks this question, can the deaf vote? And for the first time, people see themselves — identify themselves by a disability. And for the first time, the community feels a separateness from each other.
Ms. BLUE: (Through interpreter) Right. They feel we're different, all of a sudden. Prior to this question, you know, you had a deaf person and a hearing person, and they would live together to the point where they might forget who was hearing and who was deaf. But all of a sudden, this question comes up — can they vote? Everyone all of a sudden has to stop and think. All of a sudden, people are wearing labels for the first time. People are separating from others.
Ms. RUSH: And in the play — in the story of the play, in fact, two best friends - one deaf and one hearing — fight over the issue because the deaf man doesn't really want them to investigate this because, why? We've always voted. Why should we not vote? What's the point of finding out whether or not there's a law or there isn't? And his best friend says look, the law is the law. And if there is a law that says we are not allowed to vote, we need to know that because we'll be breaking the law. And these two best friends for decades all of a sudden are no longer friends over an issue that never was before.
CONAN: Don't tell us how it comes out. We'll have to go see the play.
(Soundbite of laughter)
Ms. RUSH: Yeah, yeah, yeah, yeah.
CONAN: Catherine Rush and Adrian Blue are co-authors of the play This Island Alone. We'd also like to thank Alec Lev, who was Adrian Blue's interpreter. They all joined us from the studio at Audiolutions on Martha's Vineyard in Massachusetts. Thanks very much. Good luck with the play.
Ms. RUSH: Thank you very much.
Ms. BLUE: (Through interpreter) Thank you very much.
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan in Washington.
The Evolving Debate over Cochlear Implants
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 email@example.com.
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 firstname.lastname@example.org.
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: email@example.com.
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: firstname.lastname@example.org.
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.