Let me tell you about Jon Lipsky who lives in the Thompson House at New England Homes for the Deaf in Danvers, Massachusetts, and has never been to London, and has never met Pete Townshend, and has never heard of (nor heard) Tommy, A Rock Opera, by The Who. And yet Lipsky, 72, the same age as Townshend, is in fact a real live deaf-blind pinball wizard. He could have been the inspiration for that song, written by Townshend in 1969, about a "deaf, dumb, and blind boy" who is a pinball champion, a song which reached number 4 on the UK charts and number 19 on the US Billboard Hot 100. But Lipsky isn't some made-up, romanticized, rock 'n' roll version of a person who is deaf and blind; he's the real thing, a man with Usher Syndrome--born deaf, becoming blind as a young adult--who has loved pinball all his life, still enjoys playing, and owns several pinball machines himself.
But what makes Lipsky a pinball wizard is less his virtuosity as a player than the fact that he's a mechanical wiz, has built pinball machines from scratch, can tell you about their history and evolution, can take them apart and fix them and put them back together again, often using his lips and tongue–in lieu of eyes–to identify and differentiate between the smaller parts and components. He's a deaf-blind handyman, tinkerer, repairman. People bring him their lamps and vacuum cleaners and small appliances to fix, which he does expertly and promptly and at very reasonable prices. He is, in short, far more interesting and impressive than that far-fetched musical figment of Townshend's imagination, which, by the way, I grew up listening to, singing along with Townshend and Roger Daltrey et al. full-throatedly as a kid.
I loved the music of that so-called rock opera, and though the story itself was somewhat dubious and abstruse–Tommy, born during the First World War, becomes "deaf, dumb, and blind" after witnessing a murder, then becomes a pinball champion and reaches a state of grace, regaining his senses and starting his own religion–it did, nevertheless, totally capture my imagination as a teenager. Tommy, in fact, was the only deaf-blind person, aside from Helen Keller, whom I had ever heard of.
Helen Keller and Tommy. These were my deaf-blind models; they were whom I thought of when I heard the words "deaf and blind." After all, I'd never met a real live deaf-blind person. Most people haven't. Most people have no idea that there are an estimated 500,000 deaf-blind people living in the United States today; that they are teachers, parents, lawyers, programmers, marathon runners, psychologists, poets, housewives, accountants, program directors, entrepreneurs; they are also, some of them, hotheads, failures, fools, simpletons, alcoholics. And there is at least one pinball wizard among them. The point is, they are as heterogeneous and authentic, as talented and as flawed, as the rest of us. I should know, I've been working (and playing) with deaf-blind people now for over thirty-five years as a sign language interpreter. How I got into this line of work is another story, a far less interesting one than Jon Lipsky's story, but maybe I should explain briefly how it all came about.
I remember back in college, before I'd ever met a deaf or blind or deaf-blind person, my girlfriend at the time took an introductory sign language class during the summer of our sophomore year. When she returned to campus in September, an ASL convert, she tried to convince me of the legitimacy and complexity and beauty of American Sign Language. But I would have none of it. I was quite the sophomoric snob back then, an English major and a German minor, and I didn't think sign language was in the same league as German, the language of Goethe and Schiller. "But it's a real language," she insisted. "It has its own grammar and syntax and morphology. And Deaf people have their own culture." I remember arguing with her about it. German, I said, now that's a real language, eine echte Sprache, with its own sovereign country, a people, a history, a culture. But sign language? No. I don't think so. Can't be.
Of course, I had no idea what I was talking about for I was as ignorant of deaf people and sign language as most people are. How ironic then, that just a few years later I should end up taking an ASL class myself, that I should end up falling hopelessly and irrevocably in love with the language–and the people–and go on to become a professional sign language interpreter in the Boston area, where I regularly interpret for people who are deaf and deaf-blind. Which is how I met Jon Lipsky. And I'm here to tell you, ASL is in the same league as German. (There is a different signed language in every country where there are deaf people.) And Tactile ASL (T-ASL) is more beautiful and more true than all of the verses of Goethe and Schiller put together.
Deaf-blind people are alive and well and living extraordinarily ordinary lives right here among us, though most of us can't even imagine it. And most of us don't even recognize it–don't recognize them–though deaf-blind people are easy enough to spot if you know how to look for them. If you happen to see a deaf-blind person listening tactilely–that is, hand on the hand of the person signing to him or her–you will probably recognize that the conversation is in sign language, but you may not realize that the listener is deaf and also blind. For some reason, people don't get it. Even doctors (I should say, especially doctors) don't seem to get it. I often wonder why we are so dumb when it comes to deaf people, and blind people, and especially deaf-blind people. Why do we tend to get it all mixed up? Deaf people are given braille menus by well-meaning servers in restaurants. Blind people are spoken to loudly as if they were hard of hearing. And deaf-blind people often say they don't feel entirely accepted by the deaf community OR the blind community, that they are misunderstood and rejected by both. Is it because we're so visual and/or auditory that we can't even begin to imagine the lives of people who aren't?
Deaf-blind people run the gamut from hard of hearing and legally blind to profoundly deaf and totally blind. Some of them sign, some speak orally, some read braille, some read large print, some use white canes, some use guide dogs, and some sort of "pass," or try to. In fact, it's helpful to think of "race"–or what is perceived or described as race–as an analogy: the way that people who identify as "black" can have skin color that ranges from very dark to very light. Similarly, there is quite a spectrum among people who identify as deaf-blind. They can have a lot of hearing/vision, or some, or very little, or none at all.
As for Jon Lipsky, he was born deaf and lost his vision gradually to retinitis pigmentosa (RP) as a young adult. He grew up in Swampscott, Massachusetts, and went to the Beverly School for the Deaf, where he learned to sign on the sly because sign language, incredibly, was forbidden in schools for the deaf back then. Deaf children were forced to try to lipread their teachers and each other, to try to speak orally and appear as close to "normal" as possible. Speech and lipreading were emphasized to the exclusion of all other subjects. Deaf education was, in many instances, and for many decades, nothing more than oppression, discrimination, infantilization, and consequently many deaf kids ended up not learning much in school. Jon's father was a carpenter, house painter, paper hanger, and all-around handyman who did not know sign language but nevertheless taught Jon everything he did know about carpentry, machines, electronics, and how things in general work. They communicated through nuts, bolts, screws, wrenches, levers, wires, gauges, circuit boards, screwdrivers, Lionel trains and pinball machines. When Jon's vision started to get worse in the late '60s (around the same time "Pinball Wizard" hit the charts), he briefly attended the Perkins School for the Blind, whose most famous alumnus is, of course, Helen Keller. And while I was dancing around with my headphones on, listening to the strains of Tommy by The Who, Jon Lipsky was adjusting to his deaf-blindness, learning braille and mobility, painstakingly re-teaching himself how to operate the tools, equipment, and machines that he had been intimate with before losing his vision.
When I ring Jon's doorbell, a small receiver known as a tactile communicator starts buzzing like an ardent cricket in his pocket to alert him. There's also a larger one under his bed. They both emit a variety of rhythmic vibrations to indicate whether it's the doorbell, the alarm clock, the phone (Telebraille), or the fire alarm that's ringing. With my ear to the door, I can hear him in there, finishing up what he was doing, using a dustbuster to vacuum the iron filings around the drill press where he was working. Then I hear his footsteps, his hand trailing the wall, as he makes his way to the front door. It opens a little, and out comes his hand to ask who's there? I fingerspell my name and he gives a shout and opens the door wide to let me in. We embrace. Not because we're the best of friends–I only see him once every year or so–but I've known him a long time and hugs are a deaf (and deaf-blind) cultural norm. So he gives me a hug and then I give him the small broken lamp that I've brought with me, the one my wife said she'd hate to have to throw out because she loves the shape of it. I have driven up to Danvers (about an hour from my home) to pay Jon a visit and to ask him if he can fix the lamp.
He takes it over to the kitchen table, tells me to sit. I show him where the switch is jammed, and he tries it a few times himself. Then, smiling knowingly, he unscrews it and takes it with him into the other room. I wait for him in the kitchen, nosey with my eyes. From where I sit I can see much of his small apartment: the kitchen, living room, front hallway, and the bedroom where he's digging around now–the door half open–and where he keeps all of his tools. I can't help noticing how neat everything is in the apartment. Everything in its place. All of the walls are bare, except for a large wooden clock with raised numbers (showing the correct time) hanging above a pinball machine that leans against the wall, big as a piece of furniture, casting a long shadow in a corner of the living room. In a few minutes he returns with a toolbox, sits beside me at the table, and I watch him as he opens the box and feels around inside, his fingers grazing the screwdrivers, wrenches, vice grips, pliers, drill bits until he finds a smaller box which he fishes out and opens. It's full of wires and switches and tiny components of varying shapes and sizes. With my lamp switch in his left hand, he feels around with his right hand for its twin, or a close relative, picking up one and then another, touching each to his lips briefly, putting it back, trying another, and another, finally finding the one he was looking for. He screws it into my lamp and it fits perfectly. Then he plugs in the lamp, checks the light bulb with his right hand to make sure it's screwed in tight, and with his left hand turns on the lamp. And lo, it lights up! He knows this instantly because he can feel the warmth of the lit bulb. SUCCESS, he signs, and smiles at me, I smile back. YOU CHAMP, I sign, and then I shake his hand gratefully. How about a game of pinball, he asks me.
I follow him into the living room where the pinball machine hugs the wall in shadow across from the couch, looking like a stowaway or an escapee from the arcade. He reaches underneath it and turns it on from somewhere I can't see (no need for quarters) and it lights up like a carnival, all the bells going off at once, two cartoon coquettes with precipitous cleavage and oversize breasts smiling coyly down at us from the iridescent scoreboard panel. YOU FIRST, says Jon, standing along the left flank of the machine, his hands on the glass, waiting, listening.
I pull back the launcher, feel the spring tighten up, and let it fly, watching the little steel ball scream into play, lighting up the board: five points, ten points, twenty-five points, my score doubling and tripling as the ball bounces off the cylindrical bumpers, then the side bumpers, then lands in the kickout hole, which shoots it out again and it ricochets up and down and around, then plummets steeply downward until I catch it with the left banana flipper, shooting it back up again, and again and again as I keep hitting the flipper buttons for all they're worth. Finally, elusively, hopelessly outside the reach of the flippers, the ball escapes down into the drain.
MY TURN says Jon, and we switch places. I rest my hands on the glass the way he did when I was playing. He takes a breath, launches the ball with a practiced flick, and as it sets out on its brief, chaotic, doomed journey I can sort of vaguely feel its progress through the glass, like a story being told to me second- or third-hand, the action rumored and far away, the characters faceless and muted. But now I'm not watching the ball at all. Instead I'm watching his face, which lights up each time the board lights up, his eyebrows jumping, his tongue sticking out a little in fierce concentration, his eyes widening with expectation each time he hits the flippers randomly, blindly, a tentative smile rising up as his score inches higher and higher on the scoreboard, eventually surpassing mine.
In the late 1880s, Helen Keller stepped on Laura Bridgman's toes. Literally. Most people today have never heard of Laura Bridgman, but she was once hailed as the "first deaf-blind person to learn language," and was one of the most famous women in the world back in the mid-nineteenth century. Philosophers, theologians, educators–they all came to visit her, and the public could read in the newspapers about the intimate details of Laura Bridgman's life as she blossomed under the tutelage of the educational crusader Dr. Samuel Gridley Howe of the Perkins School for the Blind in Boston.
Helen Keller was quite young–Laura already an elderly woman–when the two of them met for the first time. Helen had come to Boston with Anne Sullivan to attend Perkins for a while, and Laura didn't particularly care for this exuberant young scholar, complaining that Helen was untidy and rambunctious. "In my eagerness to kiss her good-bye," Keller wrote years later, "I trod on her toes, which greatly annoyed her…"
Yes, Helen Keller stepped on poor Laura Bridgman's toes, literally and also figuratively, for she went on to completely eclipse her in the years after Bridgman's death. Helen Keller has also stepped on the toes of every other deaf-blind person who has come after her. She eclipses them too, and upsets many deaf-blind people to this day because she is the only deaf-blind person anyone has ever heard of, thereby setting herself up as a sort of paragon of deaf-blindness and forcing comparisons to which all deaf-blind people are subjected.
Not to detract from Helen Keller's accomplishments, her greatness as a writer, thinker, and activist, but she was in many ways a rather sad case. For one thing, when one reads her various biographies, including her own autobiography, it becomes clear that she didn't have any friends who were deaf or deaf-blind. And she didn't know ASL. She could read fingerspelling (the manual alphabet) tactilely, but that's English, not ASL. She could also speechread tactilely (a technique called tadoma, that very few deaf-blind people use and is only rarely taught anymore). But she had no signing deaf or deaf-blind people in her life. She was alone in that sense, a sort of deaf-blind exile in the world of the hearing and sighted. She was, of course, a product of her time: sign language was reviled back then (in 1880, the year of her birth, the infamous Milan conference banned the use of sign language in the education of the deaf) and eugenics was all the rage. The thought that signing deaf and deaf-blind people might be a linguistic and cultural minority hadn't dawned on anyone yet, least of all Helen Keller.
As a young woman, Helen was quite beautiful, but she was completely under the control of her handlers (Anne Sullivan, John Macy, the Perkins administration, etc.) who dissuaded her from accepting a marriage proposal from a man she loved. And consequently she lost him, her one and only suitor. She was deliberately kept apart from signing deaf people, and was therefore not a member of the deaf community, which is probably why she (famously) said that "deafness separates one from people" ("whereas blindness separates one from things.") Had she known any signing deaf and deaf-blind people, she would not have asserted this false statement, for deaf people are the most social, chatty, animated, physically demonstrative and connected people in the world. Hearing people–not deafness–are what separates deaf people from other people. For hearing people, historically, are the ones who have separated deaf people from themselves. If she had had any deaf and deaf-blind friends, she would probably have rejoiced in their company, exulted in the beauty and richness of sign language, and–who knows–perhaps fallen in love again and married. But instead she was all alone, a cross between an institution and a sort of secular nun, an intellectual who loved books and ideas and had many friends and admirers, yes, but none of them intimate, and all of them hearing and sighted.
Alexander Graham Bell, for example, was a good friend of Keller's. He was also one of the greatest enemies that the deaf and deaf-blind communities have ever known. He was an oralist and a eugenicist and he lobbied Congress to pass a law that would prevent deaf people from marrying other deaf people. Thankfully, the bill failed, but Helen was nevertheless prevented from consummating her love, was prevented from learning ASL, was prevented from the company and community of other deaf and deaf-blind people. And though she later helped to establish the New England Home for the Deaf in Danvers, Massachusetts, where Jon Lipsky now resides, she would not have been able to communicate with him, without an interpreter, if the two had ever met.
I like to imagine Helen Keller, the paragon, meeting Jon Lipsky, the wizard. I like to imagine the three of us sitting down at Jon's kitchen table, me between them, interpreting for them, translating Jon's ASL into English for Helen–spelling the sentences into her hand–and translating Helen's spoken English into T-ASL for Jon. Then I like to imagine Jon reaching across my chest for Helen, finding her arm, then her hand, and taking hold of it delicately, and turning to me and graciously excusing me--sort of gently brushing me away--as he scooches in closer to Helen and begins teaching her a few basic signs: YOU. ME. DEAF-BLIND. SAME.
Then, finally, I like to imagine me discreetly telling them both--without interrupting them--that I'm going to go sit over there on the couch now across from the pinball machine. How do I tell them this without interrupting them, you may wonder? I do it on their backs, using a method known as ProTactile, a groundbreaking, soul-nurturing method of tactile backchanneling and interpersonal and environmental signals, invented just recently by two young, brilliant, signing deaf-blind women named A.J. Granda and Jelica Nuncio, whom most people have never heard of, but who have contributed more to the happiness and inclusion of deaf-blind people--living and not yet born–than Helen Keller could have dreamed of. And so, using ProTactile, I tactfully trace the trajectory of my intention–to go sit over there on the couch now–onto the canvas of their backs, without interrupting them, while they continue patiently, animatedly, getting to know each other, without me.
*originally published in upstreet.