Let's roll
by David Sarasohn
The Rotarian
Rotarian Susan Sygall is poised to go anywhere her enthusiasm takes her.
Susan Sygall sits at the restaurant making notes, her wheelchair waiting next to the table like a discreet servant. She apologizes for the way she’s dressed, offering an unexpected explanation: She’s come directly from horseback riding. All at once, the wheelchair looks different – like a tool, not a definition.
From the university town of Eugene, Ore., USA, Sygall works to change possibilities for disabled people around the world. She’s traveled and consulted from Asia to Europe, brought disabled people from all continents to Eugene to learn how societies can be more open to them, and been awarded a MacArthur “genius grant” for her work. Sygall is so lively and animated that it’s hard to believe her legs aren’t, and she’s become an international voice against that sort of assumption.
She’s traveled an implausible path, but knows exactly how she got here. “When I was a student at [University of California] Berkeley,” Sygall says, “I saw a Rotary ad in the paper: ‘Be an Ambassador.’”
So, for Sygall, it all started with Rotary. Thirty years and thousands of miles – and several more Rotary boosts – later, she still cherishes the connection. Two grants from the Rotary Club of Eugene enabled her to launch Mobility International USA (MIUSA) and its Women’s Institute on Leadership and Disability, or WILD. And when she found her current office space, 20 members of the Eugene club spent several weekends cleaning and painting what they clearly considered an unpromising location.
In addition to directing MIUSA, which aims to open opportunities for disabled people around the world (its modest slogan: “Challenge yourself and change the world”), Sygall also administers the National Clearinghouse for Disability and Exchange, a U.S. State Department program.
To Sygall, the only boundaries are the ones people put up themselves. And they should come down. “We want a kid who’s 15 and blind to think, ‘I’m going to win a Fulbright scholarship,’” she says. “We want someone with autism to say, ‘I’m going to go volunteer in Africa.’ To tell you the truth, it seems kind of obvious to me. But it seems to take so long.”
Those office walls once scraped and painted by Rotarians now are covered with pictures of disabled women and men from Japan, Russia, Africa, Latin America, and other parts of the world. And when she brings women to Eugene, she brings them to speak at the Eugene Rotary club, where she holds a particular position – and not just because she’s the only club member who’s a woman in a wheelchair.
“Anyone who meets Susan is going to get involved with her,” says Jean Phelps, a friend and a former president of the club. “People are in awe of the work she can do.
Sygall’s unusual first encounter with Rotary was the start of it all. Her interview for the Rotary Foundation Ambassadorial Scholarship happened to be scheduled for a time when she was otherwise engaged: She was participating in the longest protest occupation of a U.S. government building in history, a monthlong takeover of the San Francisco building that housed offices of the Department of Health, Education, and Welfare by disabled activists demanding that the government enforce its own regulations about accessibility.
Sygall, a Berkeley graduate already building a disabled-rights advocacy group, had to decide whether to leave the building to go to her interview. Finally, she decided to go. “I think it met The Four-Way Test,” she says. “When I had my Rotary interview,” she recalls, “they didn’t ask any questions about my being disabled; they just assumed I could do it. Mostly, they wanted to talk about wheelchair basketball, which I was playing a lot at the time.”
Sygall had a lot of other things to tell her interviewers, though. She had co-founded the Berkeley Outreach Recreation Project (BORP), which was taking disabled people around Northern California and into Yosemite National Park on electric wheelchairs developed by BORP, and challenging everyone’s expectations by taking quadriplegics horseback riding. BORP managed that with an entirely new kind of saddle, designed in the 1970s with help from Stanford University.
People raised questions about safety, so she asked a user’s opinion of the saddle idea. He told her firmly, “I think every quadriplegic has the right to break his neck twice.” It’s the kind of thing that usually doesn’t come up in a scholarship interview.
So Sygall, who’s been in a wheelchair since a car accident when she was 18, was off to the University of Queensland in Brisbane, Australia, for a year. She studied recreation, spoke to Rotary clubs, and traveled the country for 2l days, including a 3-day bus trip deep into the outback. At one point, her progress was blocked by a gravel road that resisted her wheelchair, but the sturdy bus driver carried her on his shoulders to see the sights. That experience underlined another part of her philosophy: “‘Independent’ doesn’t mean you can do it alone,” she told an interviewer years later. “It means you can work with your environment to do what you want to do.”
By the time she returned to the United States, she had a strong sense of what she wanted to do. After Australia, she’d spent six weeks hitchhiking around New Zealand, and then she and a friend rode local buses through Southeast Asia. There was no question of bus accessibility; her friend carried her wheelchair while Sygall worked her way up into the buses “on my rear end.”
One image stays with her. “In one teensy little village, there was a boy with cerebral palsy, begging on the ground with a cup. Our eyes just caught each other.”
“He should not have to be begging on the floor,” she declares. “Because of Rotary, I had a scholarship, and the same thing should be true of him. That kid should have the same options I have.”
Back in the States, she followed a friend to a master’s degree program in therapeutic recreation at the University of Oregon. And in 1981, she founded MIUSA – in a small, windowless room, with a $500 grant from Eugene Rotary club, matched by a Rotarian. Her partner, Tom Broeker, whom she met that year and has been with since, drove the bus on early programs.
She brought the attitude that disabled people, whether unable to walk, blind, or deaf, do not have second-class lives. Sygall insisted that “being disabled was a fine place to be, which was not what people expected. It was a different way of looking at disability, a kick-butt position.”
Her program soon became an international effort as Sygall traveled the world to run programs for the disabled, especially women. Encountering societies where disabilities were, and still are, considered shameful and private, she maintained that “people need to look at the disability issue as a human rights issue, not as a health issue.” That’s often a daunting challenge. Members of most minority groups, she notes, can at least draw on the experience of their parents, but few disabled people have disabled role models in their families, and social traditions can prevent them from connecting with other disabled people.
In addition to helping disabled women change their own lives, she aims to train them to change the attitudes of their societies. “I think a lot about creating environments,” she says.
So far, there are 2,000 alumni of MIUSA programs around the world, all raising questions that might not have come up without Sygall.
Her favorite program – launched in 2006 with $8,000 in seed money from the Eugene club – is WILD, which brings 30 disabled women from around the world to Eugene for three weeks of training, exchanges of ideas and strategies, and networking. “For me, it’s always like three weeks of the world as it should be,” says Sygall. “I am in awe of these women. I get a lot of strength from them.” And many of them experience an unimagined way of life. “Someone from an African country is on the streets of an accessible city for the first time in her life,” Sygall says. “To imagine what’s possible, sometimes you have to experience it. When we go around Eugene, nobody stares at us.”
Sygall is a familiar figure on the streets of Eugene. As Jean Phelps explains, whenever someone calls out a greeting and Sygall looks up to a wall of business suits, she always responds cheerily, “See you Tuesday!”
Ever the activist, Sygall has the same expectations for her organization as for the rest of the world. “If every Rotary club had a commitment to making the 40 blocks around [its meeting location] accessible,” she says, “it [could] recruit more disabled people to be Rotarians, and that would make a difference.”
Sygall’s love of travel led her to write the section on resources for the disabled traveler in Rick Steves’ Easy Access Europe. (She’d like to get a section on tips for the disabled into every travel guide and travel show.)
As with her other undertakings, Sygall’s advice is both practical and determined: “I always try to learn some of the language of the country I’m in, because it cuts through the barriers when people stare at you (and they will), and also comes in handy when you need assistance in going up a curb or a flight of steps.” Also in character: “Don’t accept other people’s notions of what is possible. I have climbed Masada in Israel and made it to the top of the Acropolis in Greece.”
Of course, determination isn’t always enough. “In Paris,” she explains, “there are curb cuts all over the place, but you can’t go to the bathroom. . . . One day the access will improve, but in the meantime, there is a world out there to be discovered. Bring along a great sense of humor.”
One day in 2000, Sygall got a phone call with the news that she’d been awarded a MacArthur Fellowship – popularly known as a genius grant – a $500,000, no-strings-attached award for her work on behalf of the disabled. The following day she was on the front page of Oregon newspapers, and reporters had gotten the reactions of her friends: “All of them stated, with absolute certainty, that I was definitely not a genius.”
Sygall hasn’t spent the money yet, however, nor did she travel much for several years, as she was helping to care for her mother, who had Alzheimer’s and was living in a care facility near her offices. (For seven years, Phelps says, Sygall sang to her mother every day.)
Last year, after her mother died, Sygall attended a study abroad conference in Antwerp, Belgium. Seeing a booth sponsored by the University of Queensland – the place where it all started – she went over to say hello. That evening, a woman from the university sought her out, and suddenly began weeping, telling Sygall that her athletic, 16-year-old daughter had become a quadriplegic as the result of a brain infection.
Sygall spent the evening talking with the woman about the way forward for her daughter. For that young woman, and for anyone else with a disability, Sygall considers nothing to be impossible. “I’m hoping,” she says, “that one of these days I’ll get an e-mail that her daughter is coming to Berkeley or to Eugene.”