Michael Chorost » Gallaudet

Gallaudet

Politics, Technology, and the Future of Deafness
Michael Chorost, Ph.D.

To be delivered at Gallaudet University on Wednesday, March 21st, 10am, Swindells Auditorium, Gallaudet University.

Open, in sign: “My name is Mike Chorost. Thank you for inviting me to Gallaudet.”

I wish I could continue in sign, because it’s such a beautiful language. My thanks to the interpreters and captioners for enabling everyone here to understand me.

Let me tell you the history of this lecture. In 2005 I published a book about getting a cochlear implant, and because of that, I was invited to give a lecture on campus back in October. That month, as you will well remember, was the height of the Gallaudet Protest. As I was packing my suitcase to fly in from San Francisco, I got an email from a Gallaudet administrator saying, “Maybe you had better wait.” He didn’t even know if I would be able to walk onto the campus, let alone give a lecture.

The flight was already scheduled. I wrote back and asked, “Can I come anyway?”

Not to give the lecture, but simply to walk around, converse with people, and see with my own eyes what was happening here.

I now realize how courageous and kind it was of him to say yes. It was as if a family going through a messy and divisive fight had not only allowed an outsider to come visit, but had welcomed him with open arms and given him a place at the kitchen table. That happened quite literally, in fact. The campus hotel was closed, so two professors put me up in their own homes on less than a day’s notice. Not only that, the administration arranged for me to talk to people all over campus with differing views of the crisis. I will never forget the candor, the fairness, and the scrupulous honesty I heard from every single person I spoke to. That goes even for people I met in Tent City by the gates, some of whom took exception to my perspective on being deaf and having a cochlear implant. They were tired, stressed, and angry from days of unrelenting tension. Yet even they were willing to make the effort to share their views and pay attention to mine.

In that visit, I got some sense of the complexity and diversity of the community here at Gallaudet. From the outside, it’s easy to get the impression that everyone here is completely deaf, uses only ASL, and militantly opposes cochlear implants. But I discovered that the way Gallaudet students communicate depends on the specifics of their hearing, where they grew up, and who raised them. To give you an example: had my hearing loss been just five decibels worse, or had I been diagnosed just six months later, I would not have been able to learn English well. I would almost certainly have grown up using ASL and would have come here for my undergraduate education. Just five decibels, or six months. I’m very much aware how much pure chance has determined the direction of my life.

Let me tell you my history, so you know where I am coming from with respect to ASL. Both my parents are hearing and neither knows sign. My mother had rubella when she was pregnant with me in 1964. I was born with 75-decibel losses in both ears, so I could hear loud sounds — but not speech. By the time I was 3½, I didn’t have any language at all. My hearing loss was diagnosed, and I got hearing aids before I turned 4. Those gave me enough hearing to begin learning spoken English. By the time I was five or six, my parents decided that I heard well enough to be mainstreamed.

Thus the pattern of my life was set. I grew up in a hearing world. I never learned sign. Then, on July 7, 2001, when I was 36, I lost the rest of my hearing in about four hours. Three months later, I got a cochlear implant. The world sounded very different than what I had heard through hearing aids. I had to learn how to hear all over again. It took me six months to become comfortable with using the phone again, for example.

So I’m a deaf person who grew up using English. Before I came here I was worried that I would feel like a minority, and a disliked one at that. I was especially anxious because my book is clearly supportive of cochlear implantation. Yet I felt warmly welcomed on campus, and I was surprised to see that a substantial percentage of the students had cochlear implants. To top it off, at the Clerc Center I met a little girl whose parents were both signing deaf. She had a cochlear implant. I asked why. The staff told me that her parents wanted her to have the opportunities in life that they themselves hadn’t had. In that moment, I sensed that Gallaudet is changing.

And it is changing. There has been a sea change in attitudes in just the past 15 years. In 1991 the National Association for the Deaf published a position statement accusing the medical community of trying to commit “cultural genocide” by developing cochlear implants. Conferences on cochlear implants here in Washington were picketed in the 1990s.

But the year 2000 was a turning point. In that year the National Association for the Deaf put out a new position statement that expressed tolerance for an individual’s personal choice to get a cochlear implant. I have no doubt that at the time, that was a courageous thing to do. At least partly because of that, we now have an environment where we can come together and converse openly and respectfully about these issues.

And there is a lot to discuss. Cochlear implants raise profound questions about the future of the signing deaf community. Take me: I’m a completely deaf man who can use a cellphone. Studies have shown that cochlear implants have become fairly effective at enabling people to use spoken language, particularly children. One recent study concluded that about 2/3rds of children who get cochlear implants by age 1½ reach the same performance in spoken English as biologically hearing children within six months of implantation.

Ninety-six percent of deaf children are born to hearing parents, as Gallaudet’s own studies have shown, and a majority of those parents are likely to opt for implantation so that their child will grow up using the family’s language. In a recent study of the impact of cochlear implants on the signing deaf community in Australia, Trevor Johnston concluded that approximately 45 percent of deaf children in Australia are now being implanted, and that the rate could be as high as 84 percent depending on which census figures one uses. He wrote, “The ‘negative’ impact of the cochlear implant program on the future growth of the signing Deaf community must be deemed to be significant, irreversible, and well under way.”

On top of that, other studies, which I’ve discussed at length in chapter 8 of my book, suggest that in the U.S., access to cochlear implants is still very much conditioned by race and class. You might think, for example, that African-Americans, being 12% of the U.S. population, would also be 12% of the implanted population. In fact, they’re only 4% of the implanted population. And that’s despite the fact that minorities have a higher incidence of disabilities than the Caucasian population. These numbers suggest that most white and wealthy kids will get implants and live entirely in the hearing world, while many nonwhite and poor kids will become signing deaf. The conclusion I draw in my book is that not only is the signing deaf community likely to become smaller, it will become more multiracial, and unfortunately, more economically disadvantaged.

Some scholars have argued that Johnston is being overly pessimistic, particularly in terms of extrapolating his findings to the American population. They’ve argued that since the American deaf population is larger than the Australian one, it can survive a decline in population. But cochlear implants are only part of the story. We also have the recent meningitis vaccine, the prospect of genetic engineering that would eliminate connexion-26 deafness, and the very real possibility of hair cell regeneration. It’s hard to escape the conclusion that in 30 or 40 years, and perhaps much sooner, there are unlikely to be any remaining large-scale causes of profound deafness. Furthermore, the technologies of hearing available then are likely to be good enough, and cheap enough, to make it easy to choose to be hearing.

These prospects warrant obvious concern for the future of American Sign Language and Gallaudet. These technologies and changes are coming, they are like forces of nature, and they cannot be ignored or wished away.

The question is, what is to be done?

Let me raise — in order to dismiss — one possibility. That is for the signing deaf community to resign itself to decline and eventual disappearance. That would not be unusual, historically speaking. Languages disappear all the time; it’s so common that a phrase has been coined for it: “language death.” Many Native American languages have gone extinct. Welsh and Gaelic are declining in the UK. Regional languages and dialects are vanishing all over the globe.

This reminds me of a scene in the film The Two Towers – from the Lord of the Rings trilogy — where the good guys are besieged in a castle and the bad guys are breaking down the gates. Things look grim. Defeat looks inevitable. Then one of the characters says to the king, “Ride out and meet them. Ride out and meet them head on.” And they do. Against all odds, they win.

That’s what I would like to suggest today. You could choose to think of the deaf community as being besieged in a castle, with technology pounding at the gates. You could hunker down and wait for the end. But I think there is a way to ride out and meet them head on.

What I am suggesting is that the signing deaf community embrace technology, starting with cochlear implants, and carve out a new future in which it shows the nation new ways of using technology to communicate and build communities.

That’s a lot to take in, so let me repeat it.

Now I’m going to unfold what I mean by that. I’m going to be making three points. First, I’m going to suggest that over the next few decades, the signing deaf community could shift from focusing on deafness to innovating new ways for everyone to hear, using technology. Second, I’m going to suggest that Gallaudet could focus on developing new ways for people to communicate, again using technology. Third, I’m going to suggest that Gallaudet could take leadership in teaching the nation how to form and sustain healthy communities.

First I’ll talk about how the signing deaf community could shift from focusing on deafness to innovating new ways for everyone to hear, using technology. Consider how a person with a cochlear implant is different from a person with biological hearing. Let me remind you that a cochlear implant doesn’t amplify sound like a hearing aid does. A cochlear implant analyzes sound from the outside world, digitizes it, and stimulates the auditory nerves with pulses from implanted electrodes. It bypasses all of the mechanical structures of the ear and goes straight to the nervous system. That makes it uniquely possible to decide exactly what the user will hear, with software.

At the present time, it’s not possible to replicate biological hearing, because the technology is still relatively crude compared to the mechanisms of the human ear. Cochlear implants will certainly get better, though whether they will ever fully replicate those mechanisms is an open question.

My proposal is this: let’s forget about trying to replicate the biological hearing that evolution gave our species. In short, let’s forget about normal hearing. Trying to make ourselves hear like everyone else leads to a cultural dead end. The important point is that a person with a cochlear implant has programmable hearing. That lets us explore possibilities that biologically hearing people can barely dream of. Suppose we could develop sophisticated algorithms for picking out just one voice in a noisy room. We could explore the way different algorithms change the experience of listening to music. We could learn how to selectively filter out distracting noises, like a partner’s snoring, while still being able to hear everything else. These are of obvious interest to the deaf, but the larger point I am trying to make is that they are also of great interest to people with biological hearing.

Biologically hearing people are fascinated by the possibility of being able to control their hearing. There are times when being unable to control one’s ears can be a real problem. The other day, the New York Times ran an article on couples who choose to sleep apart, and a major reason given was the partner’s snoring. A subsequent letter to the editor noted, “When I met my wife 18 years ago (second marriage for both), not only did she snore like a bear (women snore, too, you know), but one of her two cats was also in the unbreakable habit of climbing in bed and screaming for food every morning at 4:30 a.m.”
People with biological hearing suffer constantly from the noise they are forced to hear, especially in urban environments. My apartment building in San Francisco is going through a major project to fix termite damage, and the constant hammering and sawing is driving the stay-at-home residents almost literally insane.

Right now, there’s no way to alter biological hearing without damaging the inner ear, but in several decades’ time it may be quite possible. Imagine, 30 years from now, a cochlear implant for biologically hearing people. It would be seen as an enormous benefit by the hearing world.

You might ask, “Why should we care about the hearing world?” History shows that minorities that produce something valued by the majority population not only survive, but prosper. For decades, deaf people have argued that deafness shouldn’t be seen as a disability. Now, technology may be able to let us turn it into a positive advantage. The choice we should be aiming to have isn’t between deafness and biological hearing. It’s between deafness and totally new kinds of hearing. Gallaudet could, if it chose, become the undisputed world leader in pioneering possibilities like that.

But that’s just the beginning. Now I want to turn to my second point, that Gallaudet could focus on developing new ways for people to communicate, again using technology. Gallaudet, and the signing deaf community that it leads, has pioneered new kinds of communication. Think of the extraordinary strength of will it took to create an entirely new language founded on entirely different principles than spoken languages, and furthermore to create institutions devoted to exploring its possibilities. While we were having breakfast together in the cafeteria last October, a professor pointed out to me that it was possible to see what people were talking about on the other side of the room. It’s possible to scan a room and get a cross-section of all the conversations that are going on at that moment.

Hearing people have no idea what that’s like; they haven’t even imagined that such a thing is possible. We are heading into a future where the technology is opening up profoundly new possibilities for communication and group awareness. We’re in that future already, of course; email, cellphones, blogs, instant-messaging, and a dozen other technologies have already transformed the way everyone communicates. But we’re all still using them with hands and eyes that evolved millions of years ago. Cochlear implants are the cutting edge of a field called neurotechnology – the science of developing completely new kinds of ways of interfacing with the body and the brain. I scriptwrote a television show that aired back in January that was about the possibility of using brain implants to let people communicate with each other in ways that more closely resemble telepathy than speech. It’s a far-fetched idea, to be sure — but so were cochlear implants back in the 1970s. Who better than the deaf community to actively seize the lead in developing communications technologies that interact directly with the nervous system? And to experiment with new social forms to explore their uses? We already have one foot — more than one foot — in that world.

Now I come to my third point, that Gallaudet could take leadership in teaching the nation how to form and sustain healthy communities, and I think this is the most important of the three. Technology is an exciting thing, but in itself it contributes very little to human happiness. Let me read to you something that the chief engineer of a new company called American Telephone and Telegraph wrote back in 1891.

Someday we will build up a world telephone system, making necessary to all peoples the use of a common language or common understanding of languages, which will join all the people of the earth into one brotherhood. There will be heard throughout the earth a great voice coming out of the ether which will proclaim, “Peace on earth, good will towards men.”

You only have to take one look at the headlines to know how wrong that prediction was. Building a communications technology is one thing. Building a world where people communicate honestly and with compassion is entirely another. And I think it is here that Gallaudet and the signing deaf community could make the greatest contribution of all.

The thing that makes Gallaudet and the signing deaf community so unique is its sense of community. Over and over again, observers have remarked upon its warmth, its closeness, and its kindness. These are qualities that are conspicuously absent in the United States that most hearing people live in today. There has been a flood of books in recent years exploring the increased sense of loneliness and alienation Americans feel today, and documenting — with scientific research — the vital importance of community to human health and prosperity. In his book Love and Survival, Dean Ornish found that dozens of studies showed that solitary people are three to five times likelier to die early than people with ties to a devoted spouse, family, and community. In his beautiful book A General Theory of Love, Thomas Lewis and his co-authors explored how human bodies metabolically regulate each other to maintain dozens of physical parameters vital to health. In San Francisco, there are numerous groups experimenting with new ways of creating caring communities, and I’ve been profoundly influenced by what I’ve witnessed of their efforts. My second book, which I’m writing now, was inspired by their work and will be about technology and community. Gallaudet could undertake to be a university where research on building communities is systematically undertaken and taught to anyone who wishes to enroll here.

As deaf people, we know solitude, and we know the value of community. Gallaudet is manifestly a reservoir of knowledge about how to build and sustain communities. That remains true even in the wake of the Protest. The Protest exposed — traumatically — longstanding tensions in the community that were left unaddressed for decades. Nevertheless, I am certain that Gallaudet’s fundamental strengths of openness, caring, and dialogue remain, because I saw them myself when I was here last October. Those are strengths that can be leveraged to help a nation that desperately needs leadership, particularly in the wake of the last seven years. At the moment, Gallaudet thinks of itself as a liberal arts university for the deaf. As I have just argued, I believe that perspective will eventually lead to its decline. But if Gallaudet thought about itself as a place where community is explored, rather than just signing deaf community, it could build a unique niche among American universities that would ensure that it lasts all but forever.

I’m arguing that Gallaudet has unique strengths in the technology of sensory modification, the technology of communication, and the creation of community that can be leveraged to create a whole new future for itself. All three of these are things that the
world is eager to learn about.

Now you’re probably thinking, “But what happens to the founding purpose of this school, the education of the deaf and the continuation of American Sign Language?” Let me invite you to think about the history of another university: Harvard. It was founded in 1636 with the primary goal of training clergymen, particularly Puritan ones. In 1650, its charter called for “the education of the English and Indian youth of this Country in knowledge and godliness.” Attendance at chapel was required until the mid-1880s. Now? We don’t even have Puritans. Harvard is a fully secular university that would have been unrecognizable to its founders. My own alma mater, Brown, was founded by Baptists. Brown isn’t Baptist anymore. My point is, history shows that universities change profoundly over time. If the incidence of deafness diminishes to a fraction of its current size, then Gallaudet too must either change profoundly or disappear.

I’d like to offer a vision of what Gallaudet could be like in 50 years. It could be a campus populated by people with unaltered, altered, and enhanced bodies of all kinds, with the common goal of exploring new ways of experiencing the world, new ways of communicating with each other, and new ways of sustaining communities that meet the primal human needs of being understood, being accepted, and being valued. Only a small percentage of the students would be unable to hear, and that would be either by choice or by some as yet untreatable condition. ASL might have a similar status on campus as Latin does at Catholic universities today: a source of connection to the community’s heritage, but not necessarily the sole language of daily use. The campus language might well be a rich combination of spoken English and ASL signs. From what I’ve learned about ASL, I’ve come to believe it’s superior to spoken languages for emotional communication, such as joking, storytelling, and intimate conversations. English has a long history of adopting innovations from other languages. The English used by half a billion people in the year 2100 might well have significant borrowings from sign. Even today, parents of young hearing children now routinely teach them a handful of signs to make communication easier. That’s not the same thing as teaching them ASL, of course, but it’s a foothold, and a source of goodwill and awareness that Gallaudet could easily leverage in the coming decades.

In ways like that, and in other ways we can’t even imagine now, Gallaudet could be a perennial source of innovations that would contribute to the making of a wiser and more humane society than we have now. And everyone who sets foot on this campus would learn of the extraordinary legacy left to them by the deaf people who built and sustained this place. That legacy might well be remembered for centuries, just as we remember the religious orders that founded Oxford and Cambridge a thousand years ago.

How would Gallaudet realize such a vision? That’s where leadership comes in. It would have to be done by creating a detailed roadmap toward that future and then raising money, hiring talented people, and building buildings. For example, in 1998 Alfred Mann, the founder of Advanced Bionics, gave $100 million to the University of Southern California to found the Alfred E. Mann Institute for Biomedical Engineering, which is doing research in, among other things, retinal prostheses for the blind and better artificial limbs. A similar bequest could fund the creation of, say, the Gallaudet Institute for Neurotechnology, Communication, and Community. Gallaudet is primarily a liberal arts university, so it might choose to focus on the innovative use of technology rather than the engineering of technology – although anything is possible.

This is, of course, a radical proposal. I’d like to suggest that, to put it candidly, the signing deaf community has a choice between building a new future or accepting slow decline.

The tools are at hand to build a new future. Gallaudet has an impressive endowment and a beautiful campus. It has close ties to Congress. Its faculty and students collectively possess more practical and theoretical knowledge about neurotechnology, linguistics, communication, and community than any other institution on the planet. It has the admiration and goodwill of hearing people around the world. And most of all, it has the values of openness, kindness, and community – the values I saw so vividly even during the hardest days of the Protest.

Gallaudet has everything it needs. It’s all right here.

Close, in sign: “Thank you very much. Any questions?”

References

“My memoir of the experience”: Chorost, Michael. Rebuilt: How Becoming Part Computer Made Me More Human. Houghton Mifflin, 2005.

“One recent study concluded that about 2/3rds of children”: McConkey Robbins et. al., “Effect of Age at Cochlear Implantation on Auditory Skill Development in Infants and Toddlers.” Archives of Otolaryngology – Head and Neck Surgery 130 (May 2004).

“Ninety-six percent of deaf children are born to hearing parents”: Mitchell, Ross E. and Michael A. Karchmer. “Chasing the Mythical Ten Percent: Parental Hearing Status of Deaf and Hard of Hearing Students in the United States.” Sign Language Studies 4.2 (Winter 2004).

“Trevor Johnston concluded that approximately 45 percent of deaf children in Australia are now being implanted”: Johnston, Trevor. “W(h)ither the Deaf Community? Population, Genetics, and the Future of Australian Sign Language.” Sign Language Studies 6.2 (Winter 2006).

“In fact, they’re only 4% of the implanted population”: Christiansen, John B., and Irene W. Leigh. Cochlear Implants in Children: Ethics and Choices. Washington, D.C.: Gallaudet University Press, 2002: 328.

“I scriptwrote a television show”: The 22nd Century, PBS, airdate January 17, 2007.

“the New York Times ran an article on couples who choose to sleep apart, and a major reason given was the partner’s snoring”: Rozhon, Tracie. “To Have, Hold and Cherish, Until Bedtime.” New York Times, March 11, 2007.

“A subsequent letter to the editor”: Mitchell Shapiro, letter to the editor, New York Times, March 13, 2007.

“Someday we will build up a world telephone system:” “Past Predictions About the Future of the Telephone”, http://www.elon.edu/e-web/predictions/150/1870.xhtml. Accessed March 17, 2007.

“Let me invite you to think about the history of another university: Harvard.” Wikipedia. http://en.wikipedia.org/wiki/Harvard#History. Accessed March 17, 2007.

Ornish, Dean. Love and Survival: The Scientific Basis for the Healing Power of Intimacy. Ebury Press, 2001.

Lewis, Thomas, and Fari Amini and Richard Lannon. A General Theory of Love. Vintage Press, 2001.