Interviewsand Articles

 

Susan Schaller and the Story of a Contemporary Miracle

by Richard Whittaker, Apr 23, 2009


 

 








Photo: R. Whittaker


Are there adults living today who have not learned a language, who cannot even conceive of language? They do exist, although, according to Susan Schaller, there's almost nothing written about them. Perhaps that's because, according to the prevailing views of experts, adults who have not acquired language will never be able to do so.
     This was not an area to which I'd given a single thought until my unexpected meeting with a stranger one day in a Berkeley restaurant. It's a nice coincidence that the unlikely meeting took place in an unlikely setting. One afternoon a week that "A Taste of the Himalayas" is taken over by a group of grassroots philanthropists who serve a four-course meal for the price of $0.00. This is Karma Kitchen, where customers are treated to a pay-it-forward dining experience. The atmosphere that inevitably arises releases some of the reticence between strangers. People are invited to share tables with people they haven't met before. Besides the radical practice of not charging for the meal, it's another piece of the gentle iconoclasm of the place. Without fail, each week many stories are generated about unexpected connections - and my meeting Susan Schaller is one of them.

       Susan was seated directly across the table from me. I'm less anxious than I used to be about meeting strangers, but it was still an awkward process. We were both feeling our way along when the topic of independent scholarship came up, and how if you don't have a Ph.D. you're up against a lot of prejudice. Then we got into the subject of language and soon, presto! I was hearing an extraordinary story.
     The more I heard, the more extraordinary it sounded. In fact, I was stunned. Was it possible I was hearing a story akin to the story of Helen Keller? Turns out Schaller had written a book about it
[A Man without Words, University of California Press, 1995].  I asked Schaller if she'd agree to an interview and a few weeks later we met at my house. As I was preparing tea, the conversation soon headed into territory I wanted to catch on tape. With cups in hand we sat down and I fumbled with my old Sony Walkman and finally got it rolling. We'd started talking about adults without language of any kind. Where would one encounter such a person, I wondered?
 
Susan Schaller:  One goes to teachers of deaf adults. In this country it could mean someone teaching American Sign Language to foreign-born deaf people. Invariably, in any metropolitan area, there will be one or two, sometimes three, four or five people who show up in a class for ASL or reading skills or English as a second language to deaf adults, who have no language at all, no shared language. They could be foreign born or born in this country and never exposed to sign language, never exposed to a visual language and being deaf, some people are born deaf and don't know there is sound. The man I taught had no idea there was sound.
 
Richard Whittaker:  He didn't know sound existed?
 
Susan:  He did not know sound existed! And he was never exposed to a visual language, and he's a visual person. When I met this man he was twenty-seven years old. Because he didn't know there was sound, because he didn't know he was deaf, he didn't know there was hearing and deafness. He studied lips and mouths. He knew something was happening. He's a very smart man. He'd be staring at lips. He'd stare at your mouth and he'd stare at this person's lips and he thought he was stupid. He thought he was stupid because he thought we had figured this mouth-movement stuff out visually. Why can't I get it? He thought he was stupid. He had no idea we were making sounds.
     One of the things that attracted me to him more than anything else--the intelligence in his eyes caught my eye--but more than that, he hadn't given up. I can't imagine going twenty-seven years thinking I was stupid and watching mouths. The most frustrating thing I can imagine. He didn't know what language was. He didn't know what sound was, but he knew something was happening and he wanted to know what that something was.
 
RW:  That's extraordinary. It really is. So how did you come to learn American Sign Language?
 
Susan:  I was seventeen and was riding my bicycle to high school and a catering truck hit me. That changed my whole life. I had a fairly severe concussion and was put in the hospital. The part of my brain that was bruised was the part that makes semantic connections between words. I could read a sentence mechanically; I could even read out loud. I could form the words, but I wasn't getting the semantic connections. That meant I couldn't really go to school and I was excused from all of my classes. I was home with my parents and I was bored out of my mind!
 
RW:  So you were healthy except that your brain function was still affected?
 
Susan:  I had just a couple of symptoms. Otherwise, I was fine. I'd talked with a friend who had graduated a semester earlier and she said, "Susan, nobody is going to know that you're not a college student! Just crash classes at the local university! It's a lot more interesting than high school." [laughs]
     So I started going to classes at university. I'm a seventeen-year old kid sneaking into classes. When I saw the drama building, I thought, "Oh, that would be fun!" So I accidentally walked into something called "Visual Poetry." The drama professor was signing, and signing beautiful images!
     I had no idea what he was signing, but it was absolutely captivating! Half of the class was deaf and half of the class was hearing. It was a drama class. It wasn't a sign language class. 
     I had no idea that I had walked into history. This was the first university ever to open up its doors to deaf people in a serious way. The first one in the world! This was at Cal State Northridge in Southern California. 
     By the way, this was 1972 and there was no American Sign Language. It existed, but it was just called "sign language" or "signing." That's how recent sign language has been acknowledged as a language.
 
RW:  It had no name, but the internal structure and everything was there?
 
Susan:  Yes. It existed. But deaf people didn't know they had a language. They didn't acknowledge it, except for the more academic deaf. But the average deaf person in many cases, signed underground, if you will. They signed in the privacy of their kitchens and were still embarrassed to sign in public. And deaf people were not in universities anywhere in the world until about that time. They caught the coattails of the civil rights movement. They followed African Americans and said, "Oh, yeah. Me, too!" [laughs] 
     So the joke, which wasn't really a joke. It was more than half-serious. They used the Black Power fist. With one hand they would cover an ear and with the other hand, they would have a fist up in the air: deaf power! They were doing that all over campus! That was a greeting. These deaf people who were attracted to the visual poetry class, they couldn't stop smiling! Because this had never happened, in the history of the world!  You could go to a hearing university; you could have an interpreter for the hearing people. The direct lecture would be in American Sign Language! 
     These deaf people were just bursting with pride! And their pride couldn't be contained. The deaf people, plus what they call CODAs, children of deaf adults - people like the professor whose first language was signing and who learned to speak English later - they, not being able to contain their happiness and their pride, started a volunteer drama group just to put signing on the stage. The National Theater of the Deaf had just started less than a decade earlier. All of this was just happening overnight. It was a good lesson for me at a young age that nobody, no person, family, community or sub-culture can protest or demand equal rights until they know who they are, until they are proud of themselves. With the Deaf that meant, "Oh, we have something! We have something to offer." And they put signing on stage. 
     So I joined this volunteer drama group and I knew three signs when I joined it [laughs]. I learned how to memorize these signs that we were performing. They were things like: [sings] "consider yourself well in," from the musical, Oliver. I had no idea what I was learning. But I was learning what they call "stage signing" which is closer to opera [laughs]. It would be like learning opera instead of learning English!
 
RW:  You're wandering around, sampling this class, that class. What was it like to be outside the box that way? 
 
Susan:  Well, I had a little taste of that before because I had a very eccentric father who really encouraged us to think creatively, and to learn creatively. For example, he had an arrangement with my older brother - I have many older brothers and sisters - but the brother closest to me who is two years older. Philip was a very bright boy and could do an awful lot, but he was bored out of his mind through most of high school. So my father had an arrangement with him. He said, "Philip, if you can keep up your grades and be responsible, you can be absent." So the relevance of that is that I had that kind of training! You were allowed to bend the rules a little bit. You were encouraged to.
 
RW:  So you felt right at home!
 
Susan:  I didn't know I was going to end up where I am now! I thought I was going to be a doctor. So I took a health careers course when I was in 11th grade, my junior year. I thought there was so much to learn in this hospital, but you followed different people around in the wards and you were emptying bed pans and not doing very much. Only once, during the whole semester, did you have a chance to watch surgery. Once a semester was not enough! I mean, this was the good stuff! 
     And I'm sure, because of my father, I started noticing that the first time in surgery the nursing students, a certain percentage of them got ill. So I started watching the locker room. I'd see a nursing student turn green and go into the locker room. So if a nurse came out, I'd put a facemask and gown on and I'd go in. [laughs] 
     So before I started crashing university, I was crashing surgery! This is when open-heart surgery was just beginning, the first time ever! I was only caught once. This doctor noticed it wasn't the same pair of eyebrows or something. He said, are you the same person who left? I said, no. He asked, Are you a nursing student? I said, "No, I'm just in high school!" [laughs].
     The doctor thought it was so funny, he said, "Well, come here." And he gave me this great anatomy lesson. The poor man he was working on, he was taking a lot longer to do surgery. So that was my practice.
 
RW:  That's amazing! Well, okay. So you end up in this class, "Visual Poetry." Now something really captured you there. Tell me more about that.
 
Susan:  I mentioned that I didn't know I was walking into history. I also didn't know I had actually walked into a class where the professor who was signing, Lou Fant, was definitely the best signer in the United States, hands down. He was not only a native signer, but he was in love with this visual world. He was a drama professor.
     I'll just fast forward here. Why am I doing what I'm doing today, which I would describe as deaf language rights, human rights, linguistic minority rights? One of the things that motivates me is that we have one of two ways we can react when we meet a person who is different from us. We can say or think or act on the idea: what's wrong with this person? Or: what can I learn from this person? As a woman, what can I learn from males? As an American, what can I learn from an African? What can I learn from a quadraplegic? Everyone can teach us something.
     If you think about culture, what is culture? Culture is a group personality. What binds people together in a culture is language. So every language is connected to a group personality. They cannot be separated. So every time you learn a separate language, you're learning about a different culture and a different way of looking at life. Every single culture and every single language can teach us something. 
     So back to deaf people. The brain is plastic from birth, so you are different from me, not just because of the obvious differences. Your brain is different from mine because it formed differently. It was given a different environment and a different set of stimuli. And deaf people can see better than us, if you're born deaf, especially. They have a different brain. It's a biological fact that deaf people are visually superior to us.
     Now back to Lou Fant. I walked in not being indoctrinated with any ideas about the deaf. I'm just an open-minded seventeen-year old not knowing what I opened the door to, and I see something beautiful! Some people ask me, why did you decide to work with the deaf? I never decided to work with the deaf. I fell in love with the signing. To me, it was painting and it was sculpting. I didn't know what it meant, but it was something actually beautiful and it did, indeed, open my eyes.
 
RW:  Do you think the atmosphere in the class also played a role? Because it must have just been vibrating  in there.
 
Susan:  Yes. And I couldn't have articulated that. In retrospect, I can say, yes, yes, yes! I can now see why it was exciting. It was celebration! If I was raised as a slave and, as a child, I didn't know I was a slave and then someone comes along named Harriet Tubman and says "there's such a thing as freedom and you actually don't have to be a slave," what happens is that, at some point, there's just incredible celebration! We talk about freedom and it's not freedom just from the physical bondage. The freedom that we really can experience is a freedom that's inside. Oh, I can be. I can be Susan! That freedom can only be expressed through celebration. It will lead to poetry; it will lead to music; it will lead to dancing; it will lead to creativity! 
     It was why they started a volunteer drama group. It was automatic. It was like that room was too small. And it's what I felt in that room when I was seventeen. We were doing poetry in that room, visual poetry. We were learning about the best of sign language; learning how to use bodies, faces, movements, three dimensions; and that room was too small. One hour or two hours was not enough. They took it all on the stage and they were telling jokes, they were playing with their language. They were celebrating themselves and Deafness for the first time in history in public.
 
RW:  I understand that ASL has all the attributes of a spoken language. You can do puns, shadings, all the nuances possible in ordinary speech, are possible in ASL. You must know what that's all about. 
 
Susan:  And in this interview it's going to be difficult to show that, but I can give a little window. It relates to what you're talking about, the grammatical complexity that's never seen by hearing people. There have been three-dimensional movements that have fed the signing semantic complexity for centuries, and probably for millennia. Aristotle talks about signing. If deaf people were allowed to congregate for more than one generation, a language would develop-and it would be a complex human language. So that said, I can describe one very simple thing. If you had asked the average person just fifty years ago if there was any way to show the difference between a noun and a verb in signing - they would have said, no. It's because they didn't see it. Take a ring you wear on your finger. If the sign is a one-time, long movement [gestures], it's the verb, putting a ring on, or taking a ring off. If I just have a short, repetitive movement [gestures], it's the noun, ring. That's a really simple difference that hearing people never saw. There are so many ways you can visually express not only nuances, but major semantic differences - in facial expression, in head movement, not just the most obvious gross movements, but in little subtle things. The difference between "it's just around the corner" and "it's a hundred miles away" can be just a tiny difference in the head tilt and the facial expression. You're not going to see that unless you study it.
 
RW:  Would you say that you're fluent in ASL?
 
Susan:  I am fluent in ASL. I was more fluent and more sophisticated a few years ago. I had another car accident. One car accident got me into signing and another car accident got me out of signing. Since 2003, I haven't had a strong connection with the deaf community. I was bedridden for most of 2003. So I'm rusty. It's just like any language.
 
RW:  I recall Oliver Sacks saying that if you didn't grow up with ASL, you couldn't really acquire it at the level a deaf person does who grows up with it.
 
Susan:  It's exactly like any other language. I started observing that if I was immersed for about four hours in ASL and not talking to hearing people and not using my ears, that I became more and more deaf. I had better and better facial expressions, better ASL and less of a hearing accent. A hearing accent is sometimes slipping back into your native language, going to English grammar. If I was immersed in it for days and days, people have asked if I was deaf. That doesn't happen right now.
 
RW:  How many people really don't have a language, and are they always deaf? Does anyone know?
 
Susan:  Nobody knows, which is the reason I've written a second book. The first book is about one languageless person I met. But many people have treated him as a freak, a once-in-a-lifetime thing. And I knew this happens all the time. About 10% of the population in the world, on average, is born with some sort of hearing impairment. Out of that ten percent, one percent is profoundly deaf. That's a basic statistic, but the really sad statistic is that 92% of all profoundly deaf people are born to hearing parents. Only 8% are lucky enough to be born to signing parents. So they have no handicap! They learn American Sign Language or German Sign Language and then they learn the spoken language of their parents. 
     As three-months-olds, they're getting exposed to visual language and, starting at nine months old, they can express themselves-younger than hearing children. It's easier to articulate with your hands than your tongue and your mouth and coordinate all of that. The reason I'm out there writing and doing public speaking, is because of the way the medical world, and their patients-new parents of deaf babies-have medicalized deafness. The ears and the mouth "need to be fixed."
     So back to your question, how many? Nobody knows. But I took the issue out of the medical arena and put it in the human rights arena. And, Richard, the most amazing thing happens when you put something in the human rights arena. Suddenly how many isn't as important. I happen to know that there are hundreds in California. I don't know what that means in the world. The man I met, at twenty-seven years old, he should not have been raised languageless.
 
RW:  So tell us about the circumstances that led to your meeting this man in the first place. 
 
Susan:  I'd moved to Southern California after graduating. And, at that point, I'd moved from medicine to public health. I was looking for a health-related job and there was a lot of competition. At that time, there were very few sign language interpreters, and that was on my resume. Also, when I was taking courses, as soon as I was conversationally fluent, I was snatched and put into interpretive training. They were desperate for interpreters! Well, everyone saw that on my resume, and people would point me toward Deaf services.
     Then I met a deaf man who was the director of Deaf community services. I said, I want a health job. He said, fine, fine, fine, but while you're looking, interpret. So I joined a registry of interpreters for the deaf and on my first assignment I go to this community college. Now a state proposition had passed that drastically affected community colleges. One thing was that now you had to have a minimum of fifteen people in order to have a class. So administrators, who didn't know about a lot of things, just had a class with a lot of deaf people in it. It was called "Reading Skills." Out of the eighteen or twenty people in there, maybe three had reading skills as their primary need. There were people running away from their abusive husbands, people being evicted-all kinds of problems. They needed social workers, they needed psychiatrists, they needed much more than reading skills. It was a zoo.
     I walked in and everyone was signing. I'm supposed to be an interpreter! I thought, what am I doing here? I thought maybe the teacher was hearing. I looked for the teacher and saw this woman with a crowd of people around her, almost attacking her and I realized she must be the teacher-and she was signing. I didn't know why I was there and started to leave. I went to the door to walk out and was actually turning the handle to leave, when I see this man who looked so frightened. He was holding himself as if he were wearing a straightjacket. He was backed up in a corner, protecting himself. I saw that he was studying mouths, he was studying people. Even though he was frightened, he was still watching: what is happening, what is happening?
     I watched an aide go up and sign to him. She was a really lousy signer and she got very frustrated. She opened up a workbook and took his hand with a pencil in it and forced his hand, from a picture of a cat to C-A-T. Then she moved on. He just had this blank look and was very scared. It was obvious he had no idea what he'd just done. So I couldn't walk out. I was curious. I walked up to him and signed, "Hello. My name is Susan." He tried to copy that and did a sloppy rendition of "Hello, my name is Susan." Obviously he didn't know what he was doing. It wasn't language. And I was shocked. 
     He looked Mayan and I thought, well, if he knew Mexican sign language, he wouldn't try to copy. That's not a normal thing to do, even if you don't know the language. I couldn't walk away. I slowly figured out that this man had no language. As I said, I could see that he was very intelligent. I could see he was trying very hard. I was twenty-two years old. I had no idea of what I was doing. I was faced with how to communicate the idea of language to someone without language.
 
RW:  And he doesn't even know sound exists?
 
Susan:  But I didn't know that at the time. It was so chaotic around me. I just had to start. I just tried to communicate. Every time I brought up my hands - since he was deaf and it made sense to try visually - every time I did that, he brought up his hands. He mimed. He had this look on his face: what am I supposed to do?
     It became obvious very soon that all of his life he had survived by copying. If he saw you pick some tomatoes, put them in a bucket and go and get some green paper stuff-money-and then you take this green paper stuff and go to that store, they give you tortillas. If you saw that, then you pick tomatoes, put them in a bucket, go get green stuff... I mean, he didn't know what he was doing, but he could survive. At least he got tortillas. 
     So the most frustrating thing, without a doubt, the most frustrating experience I've had in my entire life, was this visual echolalia. How do you get around it? He had no idea there was such a thing as a conversation, a dialogue: you listen, I talk; I talk, you listen. He had no clue!
 
RW:  Let's define echolalia.
 
Susan:  Echo. Normally echolalia refers to people who have a speech or learning problem. One of the symptoms with some kids is repeating. I say, "Richard, look at me." The little kid would say, "Richard, look at me." But he had visual echolalia. He'd just try to form signs and copy what I was doing. But his facial expression was always, is this what I'm supposed to do? 
     That question was on his face all of the time. It was terribly frustrating. It went on hour after hour, for days and days and days. Then I had an idea. If I died tonight, I may have had only one truly brilliant thought in my life. What was it that attracted me to this man? His intelligence and his studiousness, the fact he was still trying to figure things out those two things. 
     I decided to stop talking to him. Instead, I taught an invisible student. I set up a chair, and I started being the teacher to an invisible student in an empty chair. Then I became the student. I would get into the other chair and the student would answer the teacher. I did this over and over and over. And I ignored him. I stopped looking at him.
 
RW:  I'm not sure I'm clear about what your one brilliant thought was. 
 
Susan:  It will become clear. My guess was, when I had this idea of teaching an invisible student in front of him, that because of his studious nature, because of his intelligence - obviously, he can't copy me in the same way - that he was going to stop trying and just watch me. That was my hope, that in his watching and me becoming the student and going back and forth, he might get something. Because of that cat thing, the C-A-T, I knew he didn't know what cat was, I knew he didn't know what a word was, what an alphabet was, but he was a visual creature. He had, I was hoping, a picture of a cat in his head associated with the shape of CAT. He didn't know the word or the letters, but he knew the shape of the lines. 
     So what I did with the invisible student was to expand on that and elaborate it by miming a cat, a cat coming in, picking the cat up off the floor, petting the cat, holding the cat up to me and holding a look of seeing a creature. Then I'd look at the invisible student and sign cat, which is whiskers from your nose [demonstrates the gesture], and writing C-A-T on the board. I used the word C-A-T. I used the sign "cat" and I mimed cat and then I nodded to the student with my facial expression, so you understand? 
     Then I changed places and became the student. I looked at the invisible teacher now and I looked at the C-A-T on the board, and I'd pretend that I understood. I'd go, "Oh, I get it!" with my facial expression. And then I'd stand up and start petting C-A-T on the blackboard, as if it were a cat.
     Then I became the teacher again and would go, "No, no, no, no, no!" It's not a cat. It's the idea of a cat. It's a symbol. It's a way of communicating what's in my head to your head.
     Now, this is interesting. How could a languageless man have any idea of what is happening in the head? But I was just hoping that there were enough cultural clues, and he was an observant man. I was grasping at straws. So I would mime having this idea in my head with my fists close to my head and then I would throw it out at your head, as my hands opened. Then I'd become the student and I'd catch it [laughs] and put it in my head. 
     I did as many variations as I could, again, over and over-hours, days, hours, days. Frustrating-the most frustrating task in my life! I'd look at him every once in a while and sometimes he looked tired, sometimes he looked frustrated, sometimes he looked as if I were crazy. 
     There were times when we left each other and both of us had this look like this is too hard. We wanted to meet each other. But it was too frustrating. There were times when I left and thought, I'm not going to see him again.
 
RW:  You thought you wouldn't come back, or he wouldn't?
 
Susan:  Maybe both. I didn't know if I could keep going. Or I'm going to show up one day and he won't be there. I felt it and I think he felt it. You know, from his body language. This crazy woman. What is she doing? But he showed up, and I showed up. And we kept working. And my "brilliant thought," worked, finally! When I had almost given up, I tried it one more time. And something happened! Something clicked. And he got it!
     I wouldn't have been able to tell you then, but now, after years and years of studying this and meeting many people learning language, I realize the first "aha!"-the first breakthrough about what language is- must be, "Oh, everything has a name!" That is the beginning of language.
 
RW:  This must have been an extraordinary moment! You said, "I was just going to try one more time."
 
Susan:  I did have that thought.
 
RW:  And something happened at that moment. What happened?
 
Susan:  What happened is that I saw a movement. I stopped. I was talking to an empty chair, but out of my peripheral vision I saw something move. I look at Ildefonso and he had just become rigid! He actually sat up in his chair and became rigid. His hands were flat on the table and his eyes were wide. His facial expression was different from any I'd seen. It was just wide with amazement! 
     And then he started-it was the most emotional moment with another human being, I think, in my life so that even now, after all these years, I'm choking up [pauses] - he started pointing to everything in the room, and this is amazing to me! I've thought about this for years. It's not having language that separates us from other animals, it's because we love it!  All of a sudden, this twenty-seven-year-old man - who, of course, had seen a wall and a door and a window before - started pointing to everything. He pointed to the table. He wanted me to sign table. He wanted the symbol. He wanted the name for table. And he wanted the symbol, the sign, for window.
     The amazing thing is that the look on his face was as if he had never seen a window before. The window became a different thing with a symbol attached to it. But it's not just a symbol. It's a shared symbol. He can say "window" to someone else tomorrow who he 
hasn't even met yet! And they will know what a window is. There's something magical that happens be-tween humans and symbols and the sharing of symbols.
     That was his first "Aha!" He just went crazy for a few seconds, pointing to everything in the room and signing whatever I signed. Then he collapsed and started crying, and I don't mean just a few tears. He cradled his head in his arms on the table and the table was shaking loudly from his sobbing. Of course, I don't know what was in his head, but I'm just guessing he saw what he had missed for twenty-seven years.
 
RW:  [silence] That's something.
 
Susan:  [with emotion] And that changed my life. I didn't know it then, but many years later I was in a university library and remembered how I'd always thought there were other people out there, experts, who knew such things happened. I'm just this twenty-two-year old who fell into this awkward situation. Then I went to this university library and began to look for other people who had the same experience. I looked up "delayed language acquisition." I looked up "deafness." I looked up "alingualism." I looked up anything I could think of. Nothing. Nothing. Nothing.
     The only thing I could find were educators' textbooks, basically, about language problems in deaf kids. There wasn't one mention of an adult without language!
     I didn't have the idea of writing a book, but I started writing letters to journals. Basically I wrote letters to the editors and said, "Excuse me, I understand that you have this critical language learning theory that if you don't learn a language by a certain age, you can't learn a language. Of course, I don't know anything and I don't have a Ph.D., but I think you need to talk about this because I had this experience where this languageless man learned language as an adult." [laughs] I told a friend about this and she showed me this article from the Oakland Tribune about Oliver Sacks, who had became interested in the deaf community. I'd read his book, The Man Who Mistook His Wife for a Hat, and I thought, what a wonderful man! What a wonderful observer to come in and talk about the deaf community as a community, to talk about sign as a language.
     I wrote him a letter and said I'd love to be his volunteer interpreter and introduce him to key members in the deaf community if he ever came to the Bay Area. And because he was Oliver Sacks, I had this paragraph: Oh, by the way, I met a languageless man and introduced him to the idea of a shared language and then introduced him to American Sign Language. And indeed, he now has language!
     Oliver Sacks writes back, "Well, thank you about the interpreting, but what's this about a languageless man?! [laughs] He came out here to speak at the medical school and he wanted to meet me. When he met me, he said, with this Oxford accent-and he's pounding his fist in his hand -"You must write this down! In DETAIL!" [laughs] And what popped into my head was, "Who am I to argue with Oliver Sacks?" 
 
RW:  It must have been an amazing thing for you to complete the manuscript and send it to him. He certainly wrote a wonderful introduction.
 
Susan:  I feel very fortunate, very grateful. It is a bit of a fairy tale. The truth is that so much luck is involved. There are so many wonderful writers who don't get published, and that's a shame. It's unfair.
 
RW:  Maybe it's unfair, but on the other hand, your story really is extra ordinary. You told me earlier that the academic view is that such a thing isn't possible, right?
 
Susan:  There's something called the critical language learning window. Some people say if you haven't learned language by three or four years old, you can't really learn it the same way. Some people say you can learn it up to about the age ten. It's treated as dogma.
     I decided to write the book as a layperson for lay-people because I realized that if I pretended in any way to have any academic knowledge, I would be blown out of the water.
 
RW:  Was Ildefonso able to tell you anything about his life before? I take it he did become ordinarily competent in language.
 
Susan:  He did. I'm going to guess that at about six or seven years old he was herding sheep and goats and begging. Think about that. His brain was kept alive with problem solving. He had to be taught somehow that you go to this street and put your hand out, or your cup out, and try to get money even though he didn't know what money was. 
     Back to your question. Of course, you and I are interested in learning what was it like? It's another frustration that Ildefonso doesn't want to talk about it. For him, that was the dark time. Whenever I ask him, and I've asked him many, many times over the years, he always starts out with the visual representation of an imbecile: his mouth drops, his lower lip drops, and he looks stupid. He does something nonsensical with his hands like, "I don't know what's going on." He always goes back to "I was stupid." 
     It doesn't matter how many times I tell him, no, you weren't exposed to language and... The closest I've ever gotten is he'll say, "Why does anyone want to know about this? This is the bad time." What he wants to talk about is learning language.
 
RW:  What does he say about that?
 
Susan:  He uses "dark" and "light." That's when everything "became light." That's when he understood that he could ask questions and get answers. He learned that there were explanations. Before, he'd had to figure out everything on his own. He could get macho behavior. You could see that. But if he couldn't see it, like history... He had no clue why he was picked up by people wearing green and put back in brown-skin land. So he wanted to talk about what you could do with language. Did you know that you could talk to anyone in the world! Did you know that you could read!
     The only thing he said, which I think is fascinating and raises more questions than answers, is that he used to be able to talk to his other languageless friends. They found each other over the years. He said to me, "I think differently. I can't remember how I thought." I think that's phenomenal!
 
RW:  It is. It's quite... well, I don't know what it is.
 
Susan:  As far as the critical language learning period goes, of course, his adult brain couldn't learn language as well as a child's brain. But he's got a lot of language! Where he gets lost is especially with too many references to time in one sentence. He can't handle too many tenses in one sentence. But he can handle more than one reference and he can handle any amount of information. He did learn language. The few problems he has are nothing compared to not having language. 
     But the second thing is the psychological slash philosophical things with language. He says he thinks differently. However, there are a few things he doesn't think differently about. I try to meet him once a year and I always ask him, "When was the last time we saw each other?" I ask him a "when" question because it tickles me. Time was the hardest thing for him to learn. And he always prefers to say "the winter season" or "the Christmas time." He wants to point to a season or to a holiday. It's not a cognitive problem. To this day, he thinks it's weird that we count time the way we do. He can do it, but he doesn't like it. Think about it. For twenty-seven years, he followed the sun. He followed cows. He followed the seasons. It's that rain-time of the year.
 
RW:  And this is how people have done it in more traditional societies. 
 
Susan:  There's some sanity in it. We care too much about counting time. Every single religion and spiritual practice that I've ever seen has something in it about living in the present. So there's some sanity in it.
 
RW:  Yes. So what's happened for you since your book has been published?
 
Susan:  I responded to the fact that many people treated Ildefonso as a freak. That bothered me because I knew there were more people like him. Hearing people do not know about the subject. Then, when I started getting responses after the book was published-what do I do about my languageless child?-I became an expert on languagelessness, an expert on a non-field, which is very sad, actually. 
     For a while I was the only hearing person even talking about that this could happen. I saw myself as a bridge. All this happened not because I chose to, but because I fell in love with it, and I met deaf people. I thought it was wonderful.
     Then I met Ildefonso. Then I met these dark corners like skeletons in the closet.
 
RW:  Are you seeing more of these dark corners since the book was published?
 
Susan:  Well, I saw how ignorant hearing people are. They have no idea. I've been called a liar by an academic. This couldn't be true. That's the most extreme, but hearing people often can't get it, and it's not stupidity. They can't imagine such a thing. So here's a very common question, "Oh, but couldn't he read?" They just can't imagine it. What do you mean, no language?
     That's what happens at a hearing dinner party, let's say. Then I go to a deaf party. People there would ask, why are you writing about that? Everybody knows. In the Deaf world everyone knows it's hard to learn language as a deaf baby because 92% of them are born to hearing parents. The hearing parents and, especially the doctors, don't see the language issue or the socialization issue. So deaf people are tortured with hearing amplification and speech therapy and doctors saying, "Whatever you do, don't sign to your deaf baby because it will inhibit speech."
 
RW:  Don't sign to them? That's terrible.
 
Susan:  It gets crazier, Richard. Doctors nowadays, audiologists and speech therapists, teach parents and teachers to talk to their children putting their hands over their mouth and not giving them any visual clues at all, to stimulate the hell out of their auditory nerve which may or may not pick up anything. That is inhumane. That is a human rights violation! That is why I'm doing public speaking and writing. I wish I knew how I could dedicate my life to ending this abuse. What I see more and more is that the hearing world has completely medicalized this situation. I'm not saying parents are bad, but they are being influenced by the "experts," and they are blind.
     Now there are cochlear implants, which provide a kind of temporary hearing (they are still deaf at night and when the batteries are dead) for learning language and speech, but a child may lose one, two or three years of language during the critical period where we're designed to learn language. The first people who were given cochlear implants, deaf babies, and who were not signed to or given sign language and then put into schools and treated as hearing kids, out of that group only eight percent were able to pass their high school exit exams. Eight percent! If we did that with a group of hearing kids and only eight percent could pass their exit exams, immediately we'd ask, what are we doing here? But the medical world has a lot of control. The Alexander Graham Bell Association, a huge organization with money and power, promotes oralism - which means speech only - and sign language is forbidden. They have influenced parents and doctors and educators with the idea that all deaf people can speak and hear, basically.
 
RW:  That is so strange.
 
Susan:  In each story in my second book I try to emphasize one barrier put up by our society to a deaf person being seen as a full human being. One of them is the institutional denial of deafness. If deafness is acknowledged by name, then it's the consequences of profound deafness that are denied, the language issue. Language is used, but they mean speech. I met a man, "My name is Bob." [spoken robotically] This deaf adult had no idea of what he was saying! He had so much speech therapy that he could say, "My name is Bob." That is a human rights violation! No human baby should grow up without language. The only difference between the deaf and the hearing is that they have to use their eyes instead of their ears and, in every place in the world, there is a visual language. So there is no excuse!
 
RW:  As you say, each language has its special qualities. Sometimes I feel deprived because, here in America, most of us only know one. But there are hundreds of languages worldwide.
 
Susan:  Well, there are seven hundred in India alone [laughs].
 
RW:  Amazing! I imagine that each language has ways of naming specific inner experiences that are not necessarily being named in another language. So if you had access to all these nuances, it would be extraordinary! But none of us do. Language, as a whole, must reference an incredible breadth and depth of experience, which none of us are able to fully participate in. Am I making sense?
 
Susan:  Yes. And I think what you just said should make us all feel humble. Obviously, we can learn a lot from each other. If you set up any situation that is us/them, you're cheating yourself. Every language is an outcome of how the human brain works. We don't know how much we can do with our one brain, even, and each language has used the brain in a slightly different way.
     I want to go back to sign language because there is something about it which is very exciting and is different from oral languages. It appears that languages based upon the eye are a little bit more limited in terms of variations from languages based on the ear. What's exciting about this is that the grammar is more universal! So a Japanese deaf person can talk to an American deaf person within days. We can't do that in years. That is exciting! 
     I want to share a quote by a recognized genius, Leonardo da Vinci-who didn't have a formal education. He observed, observed, observed and, in the course of observing, he observed deaf people. His painting students would come up to him and ask, how can we paint better? And this is what he told his painting students. If you want to paint better, you have to see better, and if you want to see better, go learn from deaf people.  
    Think about that! We should put deaf people on international committees! And I'm not joking. Deaf people can communicate from Africa to China to Scandanavia in days - if they're thinking in their respective signed languages. This is not a handicap! We handicap them with our biases and judgments. We are hurting ourselves by not seeing what they have that might change the world. I'm serious. This could be a Star Trek show! [laughs] That would be wonderful! This is the first time I've gotten this out in a magazine. That's good!  
 
    

 

About the Author

Richard Whittaker is the founding editor of works & conversations and West Coast editor of Parabola magazine. 

 

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