Novel by disability rights activist has message for all

THE BODY’S MEMORY, by Jean Stewart, St. Martin’s Press, 276 pages, $16.95.

“How long is the body’s memory?” is the question around which Jean Stewart wheel-dances in what is being hailed as the first real novel for the disability rights movement. And, indeed, her work is transforming, poetic, as those who heard Stewart read, during the University of Maine’s observance of Women’s History Month, can attest. How’s this, from “Waiting for a Bed at Liberty Memorial,” one of the poems bookending several chapters:

“And if I have to use a wheelchair…/ I’ll hitch up the rear end/ some fancy pinstriping/ mag tires/ pair of foam rubber/ dice I’ll wear black leather/ people will want to take pictures All thanks to/ the preppy little white coated /man with the Kennedy jaw/ who goes sailing a lot/ who says my tumor is back.”

Tired of stereotyping, negative portrayals, “Super Crip” and “in spite of” stories, people with disabilities are embracing the ordinary and outrageous adventures of Kate Meredith, fictional embodiment of Everywoman coming to terms with functional loss. On her way to a professorship in creative writing, Kate is sidetracked by cancer in her hip, requiring the removal of muscles and fusion of bones, making it impossible for her to walk without tortuous pain.

The story of where that takes her, through loss and gain, makes this a developmental model of how a person does it, copes with life-changing physical disability in the face of discrimination that isn’t even recognized as discrimination by most, yet. But discrimination is the last of it. How she handles judgments from well-meaning, and not so well-meaning people, about having a limiting physical difference, and what she should do about it, makes this book an antidote to poisonous age old/new age mythology about dis-ease and dis-ability.

To a former lover, she writes: “The world would be a much simpler place for all of us if those of you who don’t have disabilities stopped … assuming you know what’s best for us.”

Stewart’s story is a metaphorical shield against what she dares to name pseudoscientific claptrap.

“They’re arrogant self-righteous sadists! They want to think you caused your cancer because they can’t stand the thought that they could get it too!”

This book is a long-awaited class act that dares to wheel up to “the aristocracy of the fit: that solipsistic, arrogant assumption that nothing could possibly impede … (their) body’s perfect sovereignty. … What dreck! Intoned by people who sit in pious self-appointed judgment.”

Take that, Shirley MacLaine, Bernie Siegel, and company. As entertaining as you are, Jean Stewart wants you to know there’s a new show in town.

Anger, yes. From her dedication to Meredith Eisberg (1954-1988), “feisty and rude, a formidable warrior,” Stewart honors anger that generates action. “There comes a time,” she quotes Denise Levertov, “when only anger is love,” and adds, “be angry, cherish that anger. Let it guide you, like certain dreams. Courage is anger, its just, pure, molten cure. Owning it, and acting.”

Stewart knows how. During the years she’s been adapting to degenerative neuromuscular damage from working with herbicides used in Vietnam, she has changed from the “me” of self-survival to the “we” of peer power, emerging as a spokesperson for the disability community. She has worked for, demonstrated for, been arrested for, and last summer got to be present for the countdown when Congress passed the landmark civil rights bill, the Americans With Disabilities Act. It was said that her tears didn’t show in the photo of her, with raised fist, on the front page of The New York Times the next day. Some of those tears fell into this book. So did the fire.

It would be a waste if this groundbreaking novel makes it only to people with disabilities, as much as the affirmation and information are needed. The “mainstream” needs its message, too.

Through her pioneering work as a disability rights activist and communicator, Jean Stewart shines with the brilliance of a polestar. Her novel is available at BookMarc’s in Bangor.

Pat Ranzoni reviews for the Disability Studies Quarterly, and is a member of the American Association of Disability Communicators. She resides in Bucksport.