The Dilemma for Disabled Authors

by Laura Hershey on July 26, 2007

ED. NOTE: Today marks the 17th anniversary of the passage of the Americans with Disabilities Act. The following reviews three books about disabilities.

Having a visible disability, and writing about it, can seem redundant. I have been asked innumerable questions about my physical condition and its related apparatuses — What happened to you? How fast can your chair go? Caught off guard, I have sometimes answered. Writing is a different type of interaction, in which I have more control over (and time to think about) how much information to offer about my disability.

Still, I can never completely quiet those naïve, inquisitive voices. When writing first-person narratives, whether autobiography or personal essay, a disabled author must decide how much consideration to give to the curiosity and cluelessness of a nondisabled readership. “Will they get it?” we ask ourselves. “Will this story narrow or widen the gap between us?”

As a result, many books about disability have followed a demand-and-supply logic, answering the general public’s burning questions with stories of obstacle and overcoming. Such books dwelt on personal adversity, attitude, and achievement, framing their authors as heroic portraits hanging in empty galleries. Other, more political writers focused instead on correcting common stereotypes, and critiquing the social conditions which turn disability into disadvantage. In doing so, however, some polemical writers felt the need to conceal or gloss over personal struggles, pain, or ambivalence.

Thus, disability literature (“crip lit,” as hip readers are starting to call it) has too often been written in response to, and therefore been guided by, standard notions about disability. One group of writers confirmed those notions, another confronted them. What both groups had in common was the urge to persuade the (presumably nondisabled) reader, to advance the equality of disabled people using either honey or vinegar. Sometimes, the politics of writing left little room for art.

Three recent books by disabled authors take entirely fresh approaches to the subject of disability, presenting it as a phenomenon both intensely personal and culturally significant. Elegy for a Disease: A Personal and Cultural History of Polio by Anne Finger, Eavesdropping: A Life by Ear by Stephen Kuusisto, and Blind Rage: Letters to Helen Keller by Georgina Kleege all follow their own logic; they do not exist in order to answer the same old questions.

They pose new questions — about history and violence and voice, about sound and sensuality, about education and self-determination. None of these books offer tragedy, platitudes, or easy inspiration. They all tell honest, compelling stories without skirting either individual hardship or social injustice. All three deserve to be widely read for the depth of their exploration, and for the beauty of their language.

Anne Finger’s Elegy for a Disease: A Personal and Cultural History of Polio, is a sweeping yet intimate study. Finger sets out to recall the experience of growing up with a disability caused by polio, while at the same time chronicling the social, clinical, governmental, and cultural responses to the virus. This result is a riveting book which challenges the reader to look beneath the surface of medical practice, media representations, and family dynamics.

Contracting the polio virus just before her third birthday, Finger has lived all her life with limited mobility and related complications. The impact of young Anne’s disability on her family, especially her parents, is profound, complex, and often mysterious even to the author. The descriptions of her home life are an often harrowing mix of unpredictable outbursts, oppressive silence, and revisionist collusion.

Finger tries hard to tease out the ways in which her changed body and circumstances interacted with her father’s progressive mental illness and violence, and her family’s other dysfunctions. At the same time, she puts this domestic drama in a broader historical context, one in which polio was not simply a virus, but took on social significance as a class marker, a public health specter, and finally a cause célèbre.

Finger writes frankly about the obstacles she encountered in trying to uncover the stories that make up the book. Predominant mythology is one challenge: The Australian nurse Sister Kenny was popularly canonized for developing treatments whose benefits were dubious. President Franklin Delano Roosevelt reframed his disability entirely, casting himself as a “cured cripple” able to overcome any adversity.

Another, trickier obstacle to Finger’s quest for truth is the shifting nature of her own memory. Images and experiences may be indelible, but cause and consequences can be elusive. “I expected that when I got to this point in my life,” the middle-aged memoirist writes, “my memories would unroll in a smooth, glitchless narrative. But it’s not a well-plotted movie that reels at a regular speed through the projector. Instead it’s like looking at jumbled snapshots, pulled randomly out of the box where they had been stored.”

The photography motif echoes Finger’s opening chapter, entitled “The Thing Itself,” in which she recalls finding a photo in her high school chemistry book showing the molecules of the polio virus. “The photograph evoked a vertiginous feeling in me: How could the thing that had so radically altered my life be so simple.”

It isn’t simple, as Elegy for a Disease makes clear. At times she questions the reliability of her own memories, but she establishes an authoritative voice even as she gently critiques her own adolescent confusion and posturing. She describes her intellectual and political dabblings as desperate, clumsy attempts to construct an identity. Later she traveled to Europe, and wound up unhappily married and living in London. She spiraled into depression, finally admitting herself to a psychiatric hospital.

Along that tortured path, though, Finger had caught glimpses of a more powerful image of disability, one involving self-respect and activism. Ultimately, Finger finally began to move more purposefully in that direction and, ultimately, found her own way to a more sane and honest life.

Poet Stephen Kuusisto, who wrote an earlier memoir called Planet of the Blind, has now delved deeper into the wonders of vision loss in his new book, Eavesdropping: A Life by Ear (alternate subtitle A Memoir of Blindness and Listening). In this collection of autobiographical essays, Kuusisto lushly describes his engagement with the world around him.

Blind since birth, Kuusisto writes vivid, sensual sketches of the locations where he has lived and traveled. He takes the reader on an audible journey from Scandinavia to Venice to Brooklyn, from lonely woods to bustling airports.

The book’s subtitle, “A Life by Ear,” is almost a misnomer, too narrow; for in fact, Kuusisto dives headlong — sometimes literally — into his subject matter, using all his senses — not just hearing, but touch, taste, smell, and his residual ability to see shadow and bright color.

In one vignette, the writer recalls discovering an expanse of ice among some trees outside his childhood home in New England. Eagerly, he ran and crawled on this frozen foundation. Then: “Ice broke beneath me. There was no water underneath, only air. The ice came in around me like silver coins. I rolled and felt shards of ice around my cheekbones and in my hair. Ice got up under my jacket and clicked like twigs caught in a wheel. What good music this was!”

He began his study of everyday sounds during his early, formative years when he lived with his parents in Finland. Poetically, he catalogs some of his earliest sound-memories there: “The clacking of a loom… My mother weaving a rug… / The sound of my father’s typing late into the night…” (5). In such “intricacies of listening,” Kuusisto found great pleasure. “What a thrill it was to be a sightless child in a city of sounds.”

From then on, Kuusisto spent his childhood exploring whatever lay before him — a horse standing quiet in a barn, an abandoned Victrola holding a still playable Caruso record, woods with infinitely varied species of birds — and embracing a variety of experiences. It’s always the music, the sounds, that Kuusisto waits for and remembers.

And on into adulthood, Kuusisto seems always to be exploring his environment and making discoveries. “Sometimes while traveling by myself,” he writes, “I’ve awakened in strange towns and heard foreign noises and languages. In those moments I am more than a little brokenhearted. I am the blind traveler who listens not merely for utility but for sustenance.”

This forlorn tone gives way to an appreciation of the intensity of feeling available to Kuusisto in his auditory environment. “I resolved to live as much as possible like a man waking up,” he says.

Music is a theme threading its way through Kuusisto’s stories. Music is also a quality embedded in his storytelling. Kuusisto absorbs sounds with pleasure, and transmits them into poetic descriptions which give tremendous pleasure.

Amid all his auditory and other sense observations, there is the near-constant awareness of being observed. In public places, Kuusisto deals frequently with the curiosity and the assumptions of strangers. “Blindness is a traveling exhibit.” He knows when he’s being examined. “When the sighted look you over,” he writes, “it feels like you’ve walked into a ghost in the woods.”

Some of Kuusisto’s commonest encounters are with people who offer to pray for him, to heal his blindness. “It’s strange enough to be a symbol for other people’s curative longings,” he reflects, “but it’s odder still to be the figure of spiritual transference — as though in receiving Jesus the disabled verify the faith of disheartened Christians. My blindness represents a promise of rescue to others.”

Those unwelcome encounters illustrate the extent to which the nondisabled public misunderstands — and misses out on — the rich varieties of earthly existence.

Georgina Kleege’s Blind Rage: Letters to Helen Keller is an odd, ambitious, and surprisingly powerful meditation on difference, identity, knowledge, and memory. By delving into the life and ideas of Helen Keller, arguably the most famous disabled American ever, Kleege transforms an icon into a person, complete with flesh, blood, opinions and moods. In the process, Kleege reveals a great deal about herself and about Keller, and even more about 20th-century cultural understandings of the human mind.

From the start, the author acknowledges that she has chosen a subject which troubles her deeply. Growing up blind, Kleege was always reminded of, and compared to, the supposedly saintly Helen Keller. Feeling she could never live up to that ideal of courage and perseverance, Kleege came to resent Keller as, she contends, many blind people do. As an author, Kleege decides to probe her own resentment, and its object. Determined to find out what makes this mythic figure tick, Kleege begins reading everything she can find written by or about Keller. And she begins writing long, personal, imaginative letters to Helen.

The topic of Helen Keller has become something of a cliché, and the epistolary format has not always produced the most compelling reading. But Kleege’s conversational, sometimes argumentative tone is utterly engaging. Furthermore, she displays extraordinary narrative skill as she describes (or, just as often, invents) the key scenes in Keller’s life, from that revelatory moment at the water pump, to Helen’s dying day.

A great deal happens in between. When she was eleven years old, Helen wrote a story called “The Frost King.” Officials at the Perkins School for the Blind, where she was a student, decided to show off Helen’s precocious talent by publicizing and distributing her story widely. Someone noticed that it resembled another author’s story, published some years earlier. Perkins School administrators subsequently held a kind of “trial” to determine whether young Helen was guilty of plagiarism.

Kleege reconstructs the scene, based partly on her research, partly on her own speculations. Kleege imagines the absurdity of it, this tribunal of adults badgering Helen, while she struggles valiantly to tell the truth as she understands it:
“’But the idea, Helen. When did the idea first come to you?’
“You have no answer for this. Time is tricky. Memory is tricky”

Helen is ultimately exonerated, but she never quite escapes other people’s suspicions regarding her independence of thought. Because most of her communication was mediated through an interpreter — usually her famed teacher, Annie Sullivan — many people assumed that her articles and speeches were written, or at least heavily influenced, by those around her.

As an adult, Keller embraced socialism, women’s suffrage, and other controversial causes. Such ideas did not jibe with the hero worship that surrounded her. With sympathetic irony, Kleege describes how, during the televised McCarthy hearings, the aging Keller felt miffed at being overlooked by the House Un-American Activities Committee, despite the radicalism of some of her earlier writings. “Your writing career was impeded,” Kleege notes, “because the general public who loved to put you on a pedestal was not always happy to hear what you had to say. Worse than that, they didn’t always believe that you were the one saying it.”

Kleege herself certainly believes in, and comes to respect, Helen Keller in all her complexity. The author’s initial animosity transforms into understanding and affection; her final letter to Helen ends with the words “Your Friend, GK.”

Demythologizing Helen Keller is a subversive project, one which Kleege undertakes boldly. For example, she considers the possibility that Keller might have had a sex life. Two men, John Macy (who was married for a time to Sullivan) and Peter Fagan, spent a significant amount of time living and working with Keller. Fagan, in fact, may have proposed to Helen; he was essentially run off by her family and Sullivan. Was there more at stake than friendship and infatuation?

Kleege’s interest here is not prurient; it is, in a sense, political. Keller, Kleege discovers, is more than a primly-packaged “source of inspiration”; she is, after all, a real woman, with a life that is “flawed, limited in some ways, rich and various in others.”

As she warms to this distant figure, Kleege also recognizes, finally, Keller’s continuing relevance to the disability rights movement, and to everyone. “There’s more than one way to be a human being — that’s what you told the world,” Kleege writes. “On the surface, it seems a pretty innocuous statement, but in fact, it’s quite revolutionary. It forces people to question everything they take for granted as normal. It’s a message that needs to be spoken still.”

That message of human diversity is part of each of these books, and if nondisabled readers gain greater insight into the value of disabled lives, and a reason to commit to equal rights for disabled people, I’m sure that Kleege, Kuusisto, and Finger would be gratified. But none of these authors is willing to simplify their stories for the sake of either palatability or persuasion. Their project goes well beyond “disability awareness,” as they pursue the complexity of life that only art can reveal.

Laura Hershey is a consultant, trainer, writer and poet. She has written book reviews for DisabilityWorld.org, Disability Studies Quarterly, and several other publications. Her recent articles have appeared in Ms. Magazine, off our backs, and the journal Topic.

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