See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor (Thought in the Act) - Hardcover

Savarese, Ralph James

Hardcover

ISBN 10: 1478001305 ISBN 13: 9781478001300

Publisher: Duke University Press, 2018

Synopsis

“We each have Skype accounts and use them to discuss [Moby-Dick] face to face. Once a week, we spread the worded whale out in front of us; we dissect its head, eyes, and bones, careful not to hurt or kill it. The Professor and I are not whale hunters. We are not letting the whale die. We are shaping it, letting it swim through the Web with a new and polished look.”—Tito Mukhopadhyay

Since the 1940s researchers have been repeating claims about autistic people's limited ability to understand language, to partake in imaginative play, and to generate the complex theory of mind necessary to appreciate literature. In See It Feelingly Ralph James Savarese, an English professor whose son is one of the first nonspeaking autistics to graduate from college, challenges this view.

Discussing fictional works over a period of years with readers from across the autism spectrum, Savarese was stunned by the readers' ability to expand his understanding of texts he knew intimately. Their startling insights emerged not only from the way their different bodies and brains lined up with a story but also from their experiences of stigma and exclusion.

For Mukhopadhyay Moby-Dick is an allegory of revenge against autism, the frantic quest for a cure. The white whale represents the autist's baffling, because wordless, immersion in the sensory. Computer programmer and cyberpunk author Dora Raymaker skewers the empathetic failings of the bounty hunters in Philip K. Dick's Do Androids Dream of Electric Sheep? Autistics, some studies suggest, offer instruction in embracing the nonhuman. Encountering a short story about a lonely marine biologist in Antarctica, Temple Grandin remembers her past with an uncharacteristic emotional intensity, and she reminds the reader of the myriad ways in which people can relate to fiction. Why must there be a norm?

Mixing memoir with current research in autism and cognitive literary studies, Savarese celebrates how literature springs to life through the contrasting responses of unique individuals, while helping people both on and off the spectrum to engage more richly with the world.

About this title

About the Author

Ralph James Savarese is the author of Reasonable People: A Memoir of Autism and Adoption and coeditor of three collections, including one on the concept of neurodiversity. He has published widely in academic and creative writing journals. In 2012-13 he was a neurohumanities fellow at Duke University's Institute for Brain Sciences. He teaches at Grinnell College in Iowa.

Excerpt. © Reprinted by permission. All rights reserved.

See It Feelingly

Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor

By Ralph James Savarese

Duke University Press

Copyright © 2018 Duke University Press
All rights reserved.

ISBN: 978-1-4780-0130-0

Contents

Foreword by Stephen Kuusisto, 
Acknowledgments, 
INTRODUCTION, 
PROLOGUE. River of Words, Raft of Our Conjoined Neurologies, 
ONE. From a World as Fluid as the Sea, 
TWO. The Heavens of the Brain, 
THREE. Andys and Auties, 
FOUR. Finding Her Feet, 
FIVE. Take for Grandin, 
EPILOGUE, 
Notes, 
Bibliography, 
Index, 

CHAPTER 1

FROM A WORLD AS FLUID AS THE SEA

You must learn to heed your senses. Humans use but a tiny percentage of theirs. They barely look, they rarely listen, they never smell, and they think that they can only experience feelings through their skin. But they talk, oh, do they talk.

— MICHAEL SCOTT, The Alchemyst

"Hands in your pocket, Tito! Hands in your pocket!" Soma said in her customary manner. We had just climbed the stairs of Arrowhead, Herman Melville's farmhouse-turned-museum in western Massachusetts, and we were about to enter the great author's study. Tito struggles with perseverative behavior, especially around books, and Soma, his mother, feared that he might touch something he wasn't allowed to touch. Like a cage for small birds, the pockets of his pants would offer some resistance to his fluttering fingers.

Melville had lived at Arrowhead from 1850 to 1863, and he had written the epic tale for which he is famous, Moby-Dick, along with the novel Pierre and stories such as "Bartleby, the Scrivener" and "Benito Cereno," just a few feet from where we were standing. The writing table, we learned from our guide, wasn't original, but the view from the window certainly was. Mount Greylock, of the Taconic mountain range, loomed in "excellent majesty," as Melville once wrote. Though it was only late October and nothing but fallen leaves blanketed the ground, I could imagine the scene in winter: snow-covered Greylock breaching the treeline like the hump of a giant, white sperm whale.

To the right of the table, an iron harpoon leaned against the wall; to the left, a door led to a small bedroom in which Nathaniel Hawthorne had slept when visiting Melville. Hawthorne's proximity to the study seemed terrifically apt. Melville had once thanked the older writer, who some believe encouraged him to turn a typical whaling yarn into a gloomy metaphysical adventure, for "dropping germanous seeds in [his] soul." On the writing table itself lay a copy of Moby-Dick, opened to the "Mast-head" chapter. "There you stand," Ishmael tells us in the chapter, "a hundred feet above the silent decks, striding along the deep, as if the masts were gigantic stilts, while beneath you and between your legs ... swim the hugest monsters of the sea" (151). Mast-head watchmen must "sing out every time" (153) they see a whale or a ship or an approaching storm. Skilled watchmen, I had read, could not only spot a whale some eight miles away, but also discern what kind of whale it was by virtue of the spout.

Before Soma or I could stop them, the birds in Tito's pockets got loose. They flitted above the desk, lifting up the book and encouraging his nose to inspect the contents. If one sensory modality predominates in Tito, it is smell, which is often the case in autism. The senses are generally heightened in the condition and not conventionally integrated. In a bit of daily writing produced while reading Moby-Dick with me, he had blithely reported, "Whenever I get hold of a book, I sniff through the pages. After that I look at what those pages show. Some people question my unique engagement with books. I answer them by sniffing more books, inviting them to join me in the search for a whale-like smell."

In the same piece of writing, he had recalled auditioning for a job at a bookstore. Because he was a published author and loved to read, some higher-up in his school district — Tito was a nonspeaking, special-ed student with classical or "severe" autism — had thought he should spend his adult days around books. "All senses riding the one sense of smell, I entered the store," he'd recounted. "Rowing my nose, I halted in front of a shelf. The smell of books intensified. There was plenty to do with my nose." As his potential employers looked on, he proceeded to sniff volume after volume — from Horticulture for Professionals to Tax Law for Dummies. He was the Russian writer Gogol's man without a nose, Major Kovalyov. Rather, he was the nose itself, insisting on a readerly life for nostrils.

In a nod to the biblical story of Jonah, Tito had written, "The vital smell of those books kept me alive in the stomach of the store." He breathed in the glorious odor of the pages and breathed out what he called "unnecessary social consciousness." By that he meant his knowledge of proper comportment. "The thought that I was somewhere being observed by curious sets of eyes, which pondered my ability to work at a bookstore, was breathed out, too," he'd added. The young man was lost — or, maybe from another perspective, found — in smell.

"It wasn't my idea to work there," Tito had explained, annoyed as much by his lack of employment possibilities as by the fact that he was always at the mercy of other people's ideas — whether those people were school administrators, autism professionals, or the average, gawking Joe on the bus. How could he work in a bookstore? That would be like having an arsonist work in a match factory or a harpooner work in the Boston Aquarium! "Why can't I just be a writer?" he'd complained, which was, of course, the lament of many a scrivener before him.

Needless to say, Tito didn't get the job. His nose had been too much in the product, even if that product was a book and even if certain books — novels, say, or volumes of poems — demand of both writer and reader profound sensory engagement. As we stood in Melville's study, that very same nose was too much in the "Mast-head" chapter. It was sniffing out whales beneath the surface of the page. Who needs vision when you have a schnoz! Soma gasped and quickly took the tome out of Tito's hands. Although I had arranged the trip, including this private tour of Arrowhead, and was in theory responsible for Tito's actions, I secretly relished his olfactory panache. My friend was excited. We had just spent seventeen months reading and discussing Moby-Dick by Skype, two chapters a week, and here we were in Melville's house, the book of books before us.

* * *

I FIRST MET Tito Rajarshi Mukhopadhyay in the summer of 2008, when he was nineteen years old. I was interviewing him for a project on neurodiversity at his home in Austin, Texas. Anyone who knew anything about the classical form of the "disorder" knew about Tito. If Temple Grandin had become the face of relatively minimal impairment in autism, then Tito had become the face — the promising face — of significant impairment. His story is really quite extraordinary.

He grew up in Mysore and Bangalore, India, where at the time autism was considered a form of psychosis. Repeatedly refused admission to school, he was educated at home by his mother. As a boy, he traveled to England to be evaluated by scientists affiliated with the National Autistic Society — in particular, Lorna Wing and Judith Gould, "legends of autism research," as Tito once referred to them. A significant challenge to the notion of "mental retardation" in the "severely" autistic, he quickly became something of a sensation. At age twelve, he published his first book, Beyond the Silence, in the United Kingdom. (In its American publication three years later, it would have the title The Mind Tree.) On the back cover of the book, the neurologist Oliver Sacks gushed, "Amazing, shocking, too, for it has usually been assumed that deeply autistic people are scarcely capable of introspection or deep thought, let alone of poetic or metaphoric leaps of imagination. ... Tito gives the lie to all of these assumptions, and forces us to reconsider the condition of the deeply autistic."

A writer friend of mine has labeled the book "Mozartian" — it's that precocious. In the section that gives the American edition its title, a banyan tree, with no way of communicating its awareness, yearns to ask a man who sits in the shade it provides why he is sad. "I have been gifted this mind," the tree says. "I can hope, I can imagine, I can love, but I cannot ask." Clearly a figure for the nonspeaking autist, the tree has trouble relating thought to embodiment: "My concerns ... are trapped ... somewhere in my depths, maybe in my roots, maybe in my bark or maybe all around my radius." While the prose is quite lyrical, the book is peppered with actual poetry — sometimes Tito stops midsentence to offer a verse. At the conclusion of The Mind Tree appear poems that he wrote for a BBC documentary about his life. In one, Tito the tourist wittily takes in the sights:

Tower of London
Strong as death
Breathing the echoes of last breaths
Of those punished by the law
Their misty breath is what I saw
And there's Big Ben. Big Ben
Telling us now is when
And Churchill Churchill standing there
In the chill

After describing the typical London tumult —"people of busy mood / ... under the cloudy skies"— the poem concludes:

I did not manage to see the Queen
Yet her palace with grave discipline
Stood since yonder ages thus
I saluted it from the red bus

With the success of his book and the BBC documentary, the autism world saluted Tito. He received an invitation from Cure Autism Now (CAN; it would later merge with Autism Speaks) to come to Los Angeles. The plan was for him to serve as a high-profile figure for the organization and for his mother to help other nonspeaking children with autism learn to communicate. Although not the first classical autist to demonstrate his intelligence, he was marketed as such, and because Soma had taught him how to write and to type with his own hand unaided, the experts took notice. "Tito is for real," Dr. Michael Merzenich, a neuroscientist at the University of San Francisco Medical School, insisted in a New York Times article from 2002. "He unhesitatingly responds to factual questions about books that he has read or about experiences that he has had in ... high fidelity." "I've seen Tito sit in front of an audience of scientists and take questions from the floor," Dr. Matthew Belmonte, an autism expert at Cambridge University, reported in the same article. "He taps out intelligent, witty answers on a laptop with a voice synthesizer. No one is touching him. He communicates on his own."

Soma called the technique that she had pioneered with Tito the "rapid prompting method" (RPM). As her website puts it, "RPM uses a 'Teach-Ask' paradigm for eliciting responses through intensive verbal, auditory, visual and/or tactile prompts." It shouldn't be thought of as "mere pointing at a letter board," she says, though learning to put a pencil through the board's cut-out letters is what the technique has come to be associated with. In order to overcome significant sensory-processing disturbances as well as profound motor planning (and initiating) challenges, Soma first employs a range of exercises designed to capture the nonspeaking autist's attention, to engage him or her cognitively, and to ground the idea of volition in the body. The constant verbal commands, issued at a pace that matches the person's self-stimulatory behavior (rocking, say, or finger-flicking), plug into and override that rhythm. Once the autist is using the letter board and has mastered spelling out words, Soma begins to ask him or her questions: at first, simple fact-based questions and then more complicated, open-ended ones. Ultimately, the goal is independent writing and typing — the letter board lays a kind of communicative foundation.

Eventually Soma and Tito left CAN; Tito loathed its cure agenda. While the organization was all too happy to champion his "miraculous breakthrough," its primary mission was to eradicate autism, and it knew no bounds in deploying fear as a fundraising vehicle. In The Mind Tree, Tito wrote, "I dream that we can grow in a matured society where nobody would be 'normal or abnormal' but just human beings, accepting any other human being — ready to grow together." He would later recount, "I was astonished by Mother's involvement with the belief that autism is a disease and needs a cure. Mother had always believed in my thoughts and judgment before. How could she participate in a system that classified me as sick? Did mother really think I was less of a person?" When they at last extricated themselves from CAN, they moved to Austin and established HALO, an RPM clinic.

While Soma offered instruction at HALO, Tito spent the day in a self-contained, special-ed classroom — basically a holding pen for people with cognitive disabilities. There was no place else for him to go when she was at work: he needed an aide to support him, and Soma, a single mother who hadn't yet become a U.S. citizen, couldn't fight to include him in regular education or manage that inclusion once it had been established. It seemed preposterous that someone this talented — this well known in the autism world — could be consigned to such a fate. With a sort of heartbreaking pragmatism, he acceded to the indignities of special education. Before leaving for work, and after returning, Soma would tutor Tito. They would do an hour and a half of humanities and then an hour and a half of science. They would make of necessity a virtue. Who needed a typical education when a more rigorous one could be provided at home?

If my son's inclusion had taught me anything, it was that it hugely benefited from, if not demanded, two parents and enormous economic and cultural capital — things that Tito lacked. My wife, Emily, had given up her career as an inclusion specialist to manage DJ's own inclusion. No one knew better than I how chancy life could be: my son, who had lived in poverty and who had been diagnosed as "profoundly mentally retarded," was now an upper-middle-class honors student at our local high school. Some kids get lucky, and some do not — there was no ignoring this simple, unforgiving truth. The fact that DJ had in effect won the lottery only mocked the ordinary failure of our educational and economic systems. In a poem called "Hap," the British poet Thomas Hardy writes, "Crass Casualty obstructs the sun and rain, / And dicing Time for gladness casts a moan. ..." For nearly a year after we adopted DJ, the Florida Department of Children and Family Services would call at dinnertime to see if we might take another kid. My exasperated "no"s were a course in bitter realism.

Homeschooling had obviously worked for Tito — at the time of our interview he had just published a third book — but I sensed that he still pined for the social acceptance and stimulation that come with a typical education. While other young people were off at college, he was aging out of special education, and it wasn't clear what he would do during the day while Soma worked. In response to an interviewer's question about the essential attributes of a welcoming school, he had once declared in verse:

My school is the open dream
My words find hard to say.
My school is the doubt in your eyes
And my withdrawing away.
My school is the summer dust grain
I saw coming through my window,
Trying to find a way to my room,
Then disappearing in an obscure shadow.

"What happens to a dream deferred?" Langston Hughes famously asked. Behind Tito's lines lurked a long history of rejection — what the blind writer Stephen Kuusisto calls "the hourly ache of not belonging."

In The Mind Tree, Tito had recounted any number of humiliating scenes with potential educators. I remembered one as we conversed in his living room:

"Here we go again," I told myself and pushed aside the words by wiping the air. ... Why should boys like me need schools? After all, how can we be taught, since we have lost our minds? ... I watched the words toss in the air like bubbles of soap all around me. They arranged and rearranged themselves ... and I laughed aloud. "See why I told you," the teacher [said] ... pointing towards me. ... I walked out of the school, with a tail of words following me. Words made of letters, crawling like ants in a disciplined row.

By giving the teacher's words a visual presence, Tito plaintively gestured at the education he was denied; it's as if the air were a blackboard. He also revealed the sensory basis of autistic thought — just how palpable language is to him. For many an educator, comportment, sadly, means everything. And yet, as the woman's demeaning words followed him into his life, they became, I thought to myself, the very words that, through his tenacious homeschooling, now fill his books.

How to describe the peculiar expression of Tito's sorrow? His was an orderly disappointment. Like the verbal insolence of a soldier, it hid beneath a uniform, manifesting itself only in a slight perturbation of tone. At one point in our interview, he called me a Marxist. I had been lamenting the plight of poor families whose children have autism. Drawing a distinction between the two of us, he scribbled, "Activists revolt while I explain." I reminded him of the passages in his work that argue against the cure proponents and instead insist on opportunities for those with autism. "I explain passionately," he clarified. I got the impression that he was doing a kind of dance, a "Texas two-step," in which the leader, Resignation, and the follower, Hope, move counterclockwise around the floor.

(Continues...)

Excerpted from See It Feelingly by Ralph James Savarese. Copyright © 2018 Duke University Press. Excerpted by permission of Duke University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Edition details

• Publisher: Duke University Press
• Publication date: 2018
• Language: English
• ISBN 10: 1478001305
• ISBN 13: 9781478001300
• Binding: Hardcover
• Number of pages: 296