When Laura Hershey wants to move, she breathes into a tube that controls her wheelchair. When she wants to speak, she shifts the tube away with her lips. This is how she painstakingly traverses the world, how she went to college, how she studied in Britain, how she traveled to China.
But she does not want to inspire you. She does not want you to think she is courageous. She does not want your sympathy.
"Disability," the woman from Denver says, "is not a tragedy. It's an exciting thing. It's really powerful."
Ask her what the power is, where it lies, and she says just this: "Look around."
Around her are other women. Women using wheelchairs. Blind women. Deaf women. Women with no arms. Women whose bodies jerk and twitch and whose words sputter out of their mouths. More than 500 people from 80 countries have come to the Bethesda Hyatt Regency for the International Leadership Forum for Women With Disabilities, which runs through tomorrow. They have been meeting all week, listening to such speakers as Secretary of State Madeleine Albright, talking about political organizing and education and sexuality and employment.
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To an able-bodied observer (a term many here would find objectionable, but more about that later), it is astonishing: A self-contained world in which wheelchairs are the norm, in which no one nervously averts eyes from faces without chins and arms without hands.
While Barbara Walters and TV viewers across the country cheer and weep for Christopher Reeve, men and women who use wheelchairs grimace at the paralyzed actor's talk about a cure through medical research that they long ago accepted will not come in their lifetimes -- and that some say they do not even want. They are not a problem for doctors, or anyone else, to solve. Like Laura Hershey, who spent years insisting her disability didn't matter and said nothing about her, the disability rights movement has changed and radicalized, demanding not only curb cuts and jobs, but a shift in attitude as well. "I hate when people say, Oh, you're so competent, I forget you're disabled!' " says Ellen Rubin, an educator from New York. That she is blind is not a fact she strives to overcome, to minimize. "It's part of who I am."
"What we're doing is not just challenging assumptions about disability, but assumptions about life in general," Hershey says. "There's a real pressure to conform, to try to fit a mold, to adhere to a certain standard of beauty and success. We can challenge the standard that says you have to be perfect or you're no good."
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The women here wear conference buttons declaring themselves "Loud, Proud and Passionate." They are the activists, the advocates, the ones who talk back. Whenever Rubin hears a parent nervously shush a child who has commented on her electronic cane, she addresses the adult directly: "Don't worry," she says. "I know I'm blind."
Help is not a simple idea. Jenny Kern, a lawyer from San Francisco, has too often felt strangers' hands on her wheelchair, moving her without even asking if she needs assistance. She throws the brake defiantly. Rubin is frequently asked, "Do you know where you're going?" by pedestrians apparently assuming she is lost without their guidance.
And along the roads of Africa and South America, state-of-the-art wheelchairs sent by First World philanthropists rot and rust. The chairs, meant to help, are too delicate for the rough roads. Spare parts are impossibly expensive. The help becomes junk.
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But Peninah Mutinda's wheelchair was never meant to be elegant. Glance at it, and she immediately offers this: "I made it myself."
The thing was built to get her through the rutted streets of Nairobi, to save her money and to match her petite body and crowded life. It is low to the ground so she can mop the floor of her apartment and look her 6-year-old daughter in the eye. The oversize front wheels do not sink in sand. Metal shields on both sides protect her clothes from spattering mud -- "skirt guards" she calls them.
"I made it to fit me, to suit me," says the ebullient 29-year-old woman, who woke up one morning 12 years ago and could not walk.
Today, Mutinda and half a dozen other members of Whirlwind Women will demonstrate how they bend metal and spoke wheels and concoct inexpensive ball bearings out of nails and washers and metal tubing, skills they learned in a month-long workshop earlier this year in Kenya. The Whirlwind I, Africa Model chairs are sold for $100 to $300. In the United States, chairs cost $1,000 to $2,000.
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A project of the Wheeled Mobility Center at San Francisco State University, Whirlwind Women is still in its infancy. Ralf Hotchkiss, a professor at San Francisco State and co-founder of the Whirlwind Wheelchair Network, has worked with disabled people in the developing world for 15 years, designing and building appropriate chairs. Mechanics trained by the program have made more than 10,000 wheelchairs, but Hotchkiss estimates 20 million people around the world still don't have needed mobility devices.
Share this articleShareThe chairs are both practical and symbolic. "Disabled women, for many reasons, are infantilized," says Barbara Duncan, director of communications for Rehabilitation International, one of the sponsors of the forum. "People reach by to pat them on the head. They do not look at them as women who have a future. They don't look at them as women. They look at them as old children."
But if women can make a living in a wheelchair workshop, much can change. "The whole texture of their lives is defined by dependency," Duncan says. "And then it gets redesigned by this avenue to independence."
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"People say, Peninah, why do you want to bend metal?' " Mutinda says. "In fact, I like doing these jobs people tend to say are meant for men. I just like it. I want to teach other women who think they can't do it."
Mutinda takes her tools with her wherever she goes, and delights in being able to make emergency repairs to her chair.
"People take you for what you look to be," she says. "If they see you are strong enough to do what you are doing -- they don't have a bad idea about you."
Irene Woodell wears silver nail polish on the two fingers that she has, and above her face with its deformed mouth and jaw her hair gleams rusty red with silver bangs.
She refuses to be invisible.
As she walks down the street, Woodell greets each stranger. "If I say Hi!' they have to say Hi!' back," says the university administrator from Detroit. "They feel uncomfortable but they respond."
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Look at me, these women are saying. Listen to me. When you call yourself able-bodied, what are you saying about my abilities? When you tell your child not to stare, what fears are you teaching? When you talk about curing my condition, what are you saying about my right to exist?
Hotchkiss spent years designing super-wheelchairs. He wanted a chair that could climb stairs, that could crouch down, that would make him more like he was before the accident that paralyzed him. Looking back, he sees those chairs as signs that he was still attempting to defy his condition.
"It's just part of a process," says Jenny Kern, the process of adjusting to new realities. And in Christopher Reeve's talk about a cure for spinal cord injuries, she hears that he is just beginning a journey, the one she traveled in her teens and that others are traveling now. "There are kids who are putting off their lives today because they're misled by Christopher Reeve's doctors that a cure is around the corner," Hotchkiss says. "I talked to one the other day, a ballerina," he says. "It took her 2 1/2 years to get past just waiting every day for a cure."
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Kern stopped waiting long ago. She has left her law firm to volunteer with Whirlwind Women and raise money for more workshops. She is building a wheelchair herself. This is not a matter of courage.
"Courage to what?" Hotchkiss asks. "Courage to get up in the morning? To decide to live? It's not a courage thing. It's just a different life and moving on."
"It's survival," Kern says. CAPTION: Florence Nayiga, Kadimala Fatuma and Florence Dorcas Adong Ewoo watch Peninah Mutinda in her Whirlwind Wheelchair.
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