LESSON 8

Awaken to All Your Senses

We accept reality so readily—perhaps because we sense that nothing is real.

—JORGE LUIS BORGES

I keep vigilant for the unexpected.

—WANDA DÍAZ-MERCED

Knowledge exists beyond accepted logic and reasoning.

—NADIA DUGUAY

What Peggie Taught Me

OUR SENSES AREN’T ORGANS. They are openings. Openings to awareness and knowledge.

My wife and I heard about Peggie from a friend of a friend. They were visiting an aging relative and noticed a young woman living among older people in the extended care wing of our local hospital. “She just lies there all by herself,” we were told. Upon investigation we discovered that Peggie had been in a serious car accident when she was two and had been in the hospital ever since, forgotten by the outside world. She didn’t speak, spent most of her time in bed, and had no connection with her family. Our advocacy was tested right away. We prevented the hospital from pulling all of Peggie’s teeth out. They thought it would be more efficient for staff to feed her. Eventually we were able to get her a properly fitting wheelchair, arrange for her to attend the local high school, and find her a place to live in the community. Through our work at PLAN, we also developed a network of friends who had interests similar to Peggie’s, which at the time included the music of Celine Dion and eating.

Diana is one of Peggie’s friends. She is also one of the busiest people we know. For years she and Peggie ate lunch together. It had all the deliberate ritual of a Japanese tea ceremony. Diana prepared the lunch in the morning and packed it in a picnic basket along with her antique silverware, crystal glasses, and Limoges china. Arriving at Peggie’s new home, she would spread a white linen cloth over the tray on Peggie’s wheelchair and set the table. In the gloomy days of winter, they might light candles. First grace. Then the slow savoring of each tasty bite. “Why do you do it?” friends asked Diana. “It’s a big chunk out of your week.” “Well,” she said, “Peggie is the one person I know for certain truly appreciates my cooking. Also it’s better than yoga. It’s the only time in my life when I slow down. One of Peggie’s gifts is her presence. She knows what’s good for me.”

Our awareness is shaped by thousands of everyday experiences. The more senses we use and the more attentive we are, the better. Combined, they help shape our identity, focus, and well-being, and what we know. They influence the structure of our thoughts, our language, and the way we express ourselves. And they help us sort out what we know to be true as opposed to what we have been conditioned to believe.

There are three shadows that diminish our awareness. The first is that most of us get by with a limited use of our senses. We tend to rely on some more than others—hearing and sight, for example. Even these aren’t as developed as they could be because there are multiple layers to each of our senses. It’s obvious, for example, that we can hear sounds. As you will soon read, we can also feel, touch, and see sound.

Second, there are invisible forces influencing our awareness. These include fragments of memory, twists of fate, tradition, and the mysterious. They also include intergenerational trauma that works its way into our psyche even if we haven’t experienced the abuse and mistreatment ourselves. We don’t always appreciate that what’s below the surface influences what’s above. When we do, we describe it as intuition or a hunch.

The third shadow that affects our awareness is the fact that the way we know and understand the world has been shaped for centuries by rich and powerful people, royalty, clergy, academics, politicians, philosophers, and warriors. It’s a vantage point restricted by being in charge and having an inflated sense of superiority. It’s not the world. It’s one view of the world and not the only view. It’s one type of knowledge and not the only knowledge. For example, as a society we are beginning to appreciate that indigenous people have a unique way of knowing based on their relationship with nature and interconnection with all living creatures. People with disabilities also have unique ways of knowing that construct their social reality on their terms, not someone else’s. Their relationship to the way the world works, or doesn’t, offers a wisdom that has universal application. That’s what Diana recognized and appreciated with Peggie’s presence.

The people I’ve chosen for this lesson are more alert to their senses than most of us. For one reason or another they are tuned to the subtleties and nuances of their environment. One has trained her whole body to hear. Another has become a “whole-body-seer.” They remind us that our natural state is to be fully alert and that the altered state is the current distracted relationship most of us have with our senses. Most important, they reveal that no single view of the world can occupy all of human space—that disability offers a view of the world that is just as legitimate as the one that comes from wealth and power. This view can liberate us from the excesses of status quo thinking.

My wish is that we become as present and attentive to each other and our surroundings as Peggie and Diana were to each other; that we honor multiple ways of knowing; and that we pay attention to the mysteries and wonders of the world. Awakening to our senses is not just the sensible thing to do—it’s essential.

Touching the Rock JOHN HULL

Blindness is one of the great human states.

Just a few days before theologian John Hull’s son was born, the doctors confirmed what he already knew: that he was completely blind. According to his wife, Marilyn, people didn’t know whether to congratulate them or commiserate. For the first couple of years, Hull treated his blindness as a problem to be solved rather than a mystery to be explored. He’d do things like tie a string around his foot and attach it to his infant son so that he had a sense of where his son was crawling. Hull, who died in 2015, taught religion at the University of Birmingham and carried on “as a sighted person who couldn’t see.”¹ In his wife’s words, he was in furious denial, continuing to multitask and rush. At one point, he had more than thirty people transcribing hundreds of his taped cassettes.

Eventually Hull hit rock bottom. He could no longer summon the faces of his wife and six children or places he had been—even memories of light. He realized that his subconscious was telling him, “Wake up—this is a crisis—you can’t tough this one out. You’ve got to really face it.”² He knew that he had to understand his blindness or it would destroy his life. Then something mysterious happened. At the point of darkest despair, his agony, loss, hopelessness, and grief disappeared. He became more intensely aware of his own body and more alert to all his senses than he had ever been as a sighted person. He became a “whole-body-seer.” In his book Touching the Rock, he wrote, “Being a [whole-body-seer] is to be in one of the concentrated human conditions. It is a state, like the state of being young, or of being old, of being male or female, it is one of the orders of human being.”³

Hull concluded that sighted people live in a world that is a projection of their sighted bodies. It is not the world, it is only one version. He realized that as a successful scholar he had let false consciousness, false spirituality, and self-deception creep into his life. That it had become too easy for him to imagine life from the top of the pile. He developed a new sense of justice, increasingly conscious of the way that marginalized people experience the world. We must become “more conscious of the long shadows of injustice and oppression which are cast upon us by our linguistic heritage,” he wrote in an essay. “Whether the source of this injustice be a patriarchal bias, or a racist prejudice, or an unconscious fear of disability. We must all try to renew, not only the face of the earth, but the face of our language.”⁴

Hull kept an audio diary that became his book, Touching the Rock. The New York Times was so impressed that they commissioned the documentary Notes on Blindness. It won an Emmy Award and can be viewed on Netflix. Toward the end of his book, Hull observed, “Blindness is the wrapping, or the medium. The gift lies deeper, on the other side of blindness.”⁵ His wife, Marilyn, explained in an interview after the documentary was released that the gift her husband was referring to is “living with what is, rather than dwelling with some other imagined existence.”⁶

Awakening to Our Senses EVELYN GLENNIE

Our senses are composed of multiple layers.

Scottish percussionist Evelyn Glennie treats her body as a giant ear. She plays in bare feet to feel the vibrations because she has been deaf since the age of eleven. “My innate curiosity led to the discovery that I could use my body as a resonating chamber and sense sound using the whole of myself rather than only using my ears,” she wrote.⁷ Glennie has won two Grammys and the Polar Music Prize. She has worked with artists as diverse as Björk, Béla Fleck, Bobby McFerrin, Fred Frith, Mark Knopfler, and the King’s Singers. She also has a thriving career as a solo percussionist.

Glennie wrote, “We are awakening to the fact that our senses constitute many layers of sub-senses.”⁸ Hearing is much more than letting sound waves hit your eardrums, she says in the documentary about her, Touch the Sound. “It’s a specialized form of touch. You feel it through your body, and sometimes it almost hits your face.”⁹ She illustrates this by describing the whoosh of air we feel when a large truck or train goes by. Glennie feels the vibrations of lower sounds mainly in her legs and feet and the higher sounds in particular places on her face, neck, and chest. In addition, she can imagine sound by watching the movement of a drumhead or cymbal or the flutter of leaves in the breeze. Glennie has said that her deafness is no more important to her than the fact that she is a woman with brown eyes. “Sure, I sometimes have to find solutions to problems regarding my hearing and its relation to music, but so do all musicians,” she wrote in an essay on her website.¹⁰ Her awareness of the acoustics in a concert hall is excellent. She describes the sound properties “in terms of how thick the air feels.”

Glennie says that losing her hearing made her a better listener and has led to a new ambition: to teach new ways of listening in order to improve communication and social cohesion. “I see a world where we’re drowning in sound,” she said in an interview. “Even toys are now electronically enhanced, so that they squeak and squawk and beep. There are many layers, and this sound-drenched world is wearing on our patience.¹¹

The Swoon of the Sensuous DJ SAVARESE

Poetry reveals the sensuous.

Poet and essayist David James Savarese (DJ) thinks that poetry is autistic because it “revels in patterned sound,” particularly if the patterns are sensuous.¹² In his book of poetry A Doorknob for an Eye, he describes autism “as a shroud of ice and dust: beauty’s cosmic hen.”¹³ Savarese coproduced, narrated, and stars in Deej, a Peabody Award–winning film that documents his journey through high school and admission to Oberlin, the Ohio college that was the first to admit women and African Americans. He became the first nonspeaking person to graduate from Oberlin. The film features four of Savarese’s poems set to animation. He says, “A poem is like a person wearing earrings: it shimmers in the light.”¹⁴ His poem “Swoon” includes the line, “My senses always fall in love: they spin, swoon; they lose themselves in one another’s arms.”¹⁵

The Sounds of Science WANDA DÍAZ-MERCED

The ear sees what the eye misses.

Wanda Díaz-Merced is an astronomer from Puerto Rico who hears the stars. She became blind in her twenties due to complications from diabetes. She thought her dreams of becoming an astronomer were over until she discovered sonification. Sonification is a way of turning light, and the numbers, graphs, and data it produces, into sound. She now uses her ears to make discoveries that other astronomers miss with their eyes. She says the eyes have limitations because they can absorb only a tiny portion of the electromagnetic spectrum we call light. By hearing the data, she is able to find patterns and phenomena that the eye misses. “What people have been able to do, mainly visually for hundreds of years, I now do using sound,” she said in a TED Talk.¹⁶

Díaz-Merced had trouble finding a job after graduation. She was told there was no such thing as a blind astronomer. Astronomers in South Africa thought differently. They hired her to work at the South African Astronomical Observatory. She currently leads a global project called AstroSense. It teaches sonification techniques to students with and without disabilities. Díaz-Merced also cochairs the American Astronomical Society’s Working Group on Disability and Accessibility. If people with disabilities are allowed into the scientific field, a titanic burst of knowledge will take place, she said.¹⁷

Thanks to Díaz-Merced, we can now hear and feel an eclipse of the sun using a rumble map, which translates light into touchscreen vibrations. She is also bringing us the music of space. A fellow scientist and jazz musician noticed that the data Díaz-Merced was collecting looked like musical notes. He showed them to his cousin, a musician, who converted them into music that you can listen to on the website Star Songs.¹⁸ When she hears the beautiful symphonic sounds of pulsating stars, Díaz-Merced says, she feels like dancing. “My sight loss has spurred me to develop other ways to observe and study the world—using my hands, my ears, and what some people would call ‘physics intuition,’ but which I call the heart.”¹⁹

Labyrinth JORGE LUIS BORGES

Whatever happens, no matter how mysterious, is a means to discovering who we are.

Poet and writer Jorge Luis Borges was appointed director of Argentina’s National Library around the same time as his gradual blindness became complete. He was fifty-five. Even though he loved to read, his blindness gave him a fresh new way of interpreting his experiences. “I speak of God’s splendid irony in granting me at once 800,000 books and darkness,” he wrote.²⁰ Legend has it that Borges could tell just by listening how many books were in a bookstore. He invented the literature of “magical realism,” which combines mystery, fantasy, and real-world ordinariness. His stories are full of mirrors, labyrinths, shadows, abrupt beginnings, and surprise endings. The stories tilt reality just enough that we are knocked off balance and invited to make sense of our lives in new ways. Suddenly normal isn’t what it seems. Suddenly our interpretation of our experience is as valid as anyone else’s.

Borges didn’t believe in absolute truth, nor that there was a single path to the truth. Instead, it was a labyrinth. “Behind our faces there is no secret self which governs our acts and receives our impressions; we are, solely, the series of these imaginary acts and these errant impressions,” he wrote in his book Labyrinths.²¹ Borges had a positive belief in his readers’ ability to interpret the shadows and mysteries in his stories. He encouraged them to gain a better understanding of their reality by taking into consideration forces that didn’t appear on the surface, and to legitimize what they might have previously thought was incidental or irrelevant.

Borges felt that his best writing had occurred after he became blind. He described writing as nothing more than a guided dream: “When I think of what I’ve lost, I ask, ‘Who know themselves better than the blind?’—for every thought becomes a tool.”²² In his essay “Blindness,” he wrote that everything that happens, including embarrassments, humiliations, unhappiness, and discord, is the ancient food of heroes. They are like clay, “given to us to transform, so that we may make from the miserable circumstances of our lives things that are eternal, or aspire to be so.”²³

Transformer Man NEIL YOUNG

Transformer man . . . your eyes are shining on a beam through the galaxy of love. . . . Unlock the secrets. Let us throw off the chains that hold you down.²⁴

Pay attention between the lines of rock-and-roller Neil Young’s songs, and you’ll discover that he has several connections to the world of disability. He had a childhood bout with polio that still affects the left side of his body. Just as his career was taking off, he began experiencing epileptic seizures, a condition that earned him the nickname Shakey. Sometimes the seizures occurred during concerts, and he’d have to leave the stage in the middle of a song. His handlers wanted to keep his condition a secret for fear of tarnishing his image and popularity. Young, on the other hand, wasn’t prepared to “keep all this weird polio/epilepsy shit quiet.”²⁵ In his biography, he describes coming out of an epileptic seizure as feeling “like bein’ born again and wakin’ up and seein’ everything is beautiful.”²⁶ Young said, “Did I get songs from the seizures? Probably.”²⁷

Young has two sons, both of whom have cerebral palsy: Zeke, with the late actress Carrie Snodgress; and Ben, with his former wife, the late Pegi Young. He became a train nerd because of Ben. His song “Transformer Man” captures that shared enthusiasm. Young also wanted the song to convey the challenges Ben faces in expressing himself and being understood, so he used computers and synthesizers to distort the vocals. “He’s got his feelings. He’s got his sensitivities. He likes life. It’s just a condition of life. It’s the way he is,” said Young in an interview.²⁸ “If you listen to ‘Transformer Man,’” he was quoted as saying in Shakey, “you gotta realize, you can’t understand the words and I can’t understand my son’s words. So feel that. For me, even talking about this is very difficult, because I want my children to be able to hear and read what I say and feel loved and know that everything is okay.”²⁹

In My Language MEL BAGGS

Language is not just about words.

Writer and artist Mel Baggs has a sophisticated way of expressing herself that most people dismiss, including linguists and scientists. They consider it random, purposeless, and coming from someone who can’t think. To correct that impression, she made a video called In My Language and posted it on YouTube. It became an internet sensation and attracted the interest of the mainstream media, including CNN’s Anderson Cooper. He profiled her, invited her to write a guest blog, and then set up an opportunity for her to answer questions from his viewers. She types at 120 words a minute and uses speech software so that she can keep pace with any conversation and respond in real time.

In My Language is divided into two parts. It begins with Baggs rocking back and forth, flapping her hands, humming, looking out the window, and repetitively rubbing her face in the pages of a book. Part two, titled “In Translation,” provides a detailed explanation, via a computerized female voice, of the meaning behind what Baggs describes as her native language. “My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings. Far from being purposeless, the way that I move is an ongoing response to what is around me,” she explains.³⁰

Baggs wants to change the assumption that because someone does not express herself in a typical manner, she can’t communicate; and because she can’t communicate, she doesn’t think; and because she doesn’t think, she is not a person. That goes for everyone, she says: “autistic and non-autistic, disabled and non-disabled, from all different cultures and backgrounds, and all communication methods,” including “the kid in school who isn’t taken seriously because she doesn’t know a lot of English.”³¹

Should autism be treated? she was asked on CNN. “Yes,” she typed. “It should be treated with respect.” As should anyone whose “language, communication, and personhood are not considered as real as someone else’s.”³²

A Little Learning Is a Dangerous Thing ALEXANDER POPE

Learning is limited if understanding comes too soon.

Alexander Pope (1688–1744) was an English poet who was known for his sharp wit. He is the second-most-quoted writer in the Oxford Dictionary of Quotations after Shakespeare. He was a self-taught genius who could understand five languages. He wasn’t afraid to express his opinions in public, particularly about the wealthy. “We may see the small value God has for riches, by the people he gives them to,” he said.³³ In return, his enemies hit back by describing him as “the most notorious hunchback of the 18th century.”³⁴

Pope seldom referred to his disability in his writing. One rare example is this: “I cough like Horace, and tho lean, am short.”³⁵ He was four feet six inches tall. Nowadays people suspect he had a form of tuberculosis that affected the growth of his bones.

His Essay on Criticism gave us many well-known proverbs: “To err is human; to forgive, divine,” “Fools rush in where angels fear to tread,” and “A little learning is a dangerous thing. Drink deep, or taste not the Pierian Spring.”³⁶ In Greek mythology, the Pierian Spring was the fountain of knowledge. Pope completed that particular couplet by advising that if we take “shallow” sips from the spring, we “intoxicate the brain” into thinking that we know a great deal. It’s only by “drinking largely” that we “sober” up and realize how little we really know.

By and for Equals NADIA DUGUAY AND EXEKO

Intellectual equality means there are no preconceived notions of who is teacher, who is learner.

Montreal-based Exeko is legitimizing traditional knowledge; street smarts; and the multiple ways people know, create, and express themselves. Cofounder Nadia Duguay describes their process as “intellectual emancipation.” They work their magic by assuming the intellectual and cultural equality of people with disabilities, indigenous people, street youth, and people who are homeless. They mediate between the knowledge and creativity emerging from people who live in prisons, squats, subway stations, and homeless shelters and from those who work in universities, libraries, museums, and galleries. In doing so, they embody the meaning of the Latin origin of the name Exeko, ex aequo, “by and for equals.” “We must directly confront the hierarchy that supports predetermined roles,” wrote Duguay in a journal article. “We must re-enchant the world by reinvesting in our ability to recognize, in a spirit of diversity, the possibility of a society in which we are all comfortable being learners—one where there are no preconceived notions of who should be teacher and who student, and one where no people are afraid of losing their own power when others do well.”³⁷

Exeko staff members roam the streets and back alleys of Montreal offering training in critical thinking. They pair inclusion with poetry and philosophy. They have an “intellectual food truck” that crisscrosses Montreal delivering books and art material. “It is not only food we need. We also want knowledge and wish you to see us as real human beings,” said Fabien, one of Exeko’s participants.³⁸ Duguay tells people that their knowledge and creativity are worthy of any university, library, museum, or gallery. Participants agree. “You make my spirit wake up,” said one.³⁹ “I have my own identity again,” said another.⁴⁰ “If we want to create a world that is more welcoming to all, we must profoundly transform the social norms that govern it, rethink the world by reorganizing what we know about it, and reflect above and beyond what we already know,” wrote Duguay.⁴¹

Did You Know . . . Closed Captioning

In 1972, WGBH, the Boston PBS television station, displayed text at the bottom of the TV screen in order to make their popular show The French Chef with Julia Child accessible to viewers who were deaf or who had difficulty hearing. Initially the text was visible on every screen. By 1974, it was available only to those who had a decoder device—thus the term closed captioning. Real-time as opposed to prerecorded captioning was introduced in 1982, enabling people to enjoy live events as they happened.