Susan Sygall ’76 still remembers some of the misguided comments she heard when she started the Bay Area Outreach and Recreation Program.
Sygall, who launched the adaptive sports program as an undergraduate at Berkeley, is an internationally renowned disability rights activist, author, and MacArthur Fellow. BORP is a widely acclaimed 50-year-old sports and recreation nonprofit that has played an influential role in the disability rights movement.
But back in the 1970s, there was skepticism—both about the organization’s approach and about its young female director. When BORP began offering horseback riding, Sygall recalls, “People said, ‘Oh, isn’t it dangerous for disabled people to go horseback riding?’”
She would reply with a quip she’d heard from a quadriplegic BORP participant: “Every disabled person has the right to break their neck twice.”
Sygall, now 73, exudes an upbeat, tireless determination. She grew up non-disabled and athletic on the East Coast: she skied, played basketball, and loved to camp. Soon after she enrolled at the University of Colorado, she became paraplegic following a car accident. After a year of rehabilitation and encouragement from her parents—Holocaust survivors who always urged her to live life to its fullest—she spent a year at NYU before transferring to Berkeley in 1973 to complete her degree as part of the Disabled Students’ Program.
On the heels of the Free Speech and anti-war movements, the Bay Area was humming with activism. Nationally, Title IX had just prohibited sex-based discrimination in school sports, and Berkeley’s Center for Independent Living, a formative hub for the disabled community, had been founded in 1972.
“Everything is always related,” says Sygall of these fights for equality. “Everyone was talking about a revolution.”
In 1974, with her friend Deborah Kaplan, J.D. ’76, she cofounded the Disabled Women’s Coalition to ensure women had a voice in the burgeoning disability rights movement. The following year, while working on an independent study project, she envisioned a recreation program for disabled people—inspired, mainly, by the fact that she couldn’t find one that appealed to her as a lifelong athlete.
“I was so passionate about recreation and sports, and I didn’t see any opportunities [for] camping in Yosemite, gymnastics, wheelchair basketball, dance, archery, self-defense,” recalls Sygall. “It was really just creating all the opportunities that I wanted to do.”
With the encouragement of a handful of Berkeley professors, such as landscape architect Robin Moore and education professor John Hurst, she made the project a reality. Her high school friend Diane Schechter flew out to help, and they submitted proposals to the Berkeley City Council, receiving two initial grants totaling $25,000.
The pair officially cofounded BORP in 1975 with a handful of programs, including swimming and gymnastics, for disabled kids in Berkeley public schools. One of its founding principles was groundbreaking at the time: People with disabilities should teach the courses, so kids could look up to them as role models and form a “sense of positive identity,” says Sygall. “It was so unusual at that time for people to talk about disability pride.”
Five decades later, BORP serves some 1,400 people annually with wheelchair basketball teams, kayaking and nature outings, power soccer (an indoor form of soccer played by people in power wheelchairs, a sport that BORP helped establish and popularize), a cycling center with more than 100 adaptive cycles, and transportation and other support services. The organization has helped shift thinking around physical activity away from therapy and toward recreation: sports for the sake of, well, sports.
That distinction has been life-changing for people like Sisseline Lovejoy. Now 18, she’s been participating in BORP’s basketball programs since she was 11.
“The first time I played basketball, it was pretty obvious to me that it was going to change my life,” recalls Lovejoy, a recent graduate of Albany High School. Lovejoy has a genetic condition called hereditary spastic paraplegia, which has progressed over her life; back when she first picked up a ball, she didn’t yet use a wheelchair for daily activities. “But I felt really slow and disabled in my day-to-day life, and there was something about being in a chair—[it] was almost like a vessel that was meant to carry me and allow me to move and to be free.”
After spending the last few years on BORP’s traveling women’s team, Lovejoy was recruited to play at the University of Arizona, where she’ll start in the fall. “It changed the way I was able to think about myself and what my body can do,” Lovejoy says of the organization.
For Emily Seelenfreund, BORP’s executive director, the ethos of “by disabled people, for disabled people” is one of the nonprofit’s most powerful features.
“A lot of adaptive sports organizations that I’ve been a part of are very top-down,” says Seelenfreund. “But because BORP was founded by people with disabilities, it’s always been really attuned to what the community wants and needs.”
“Every disabled person has the right to break their neck twice.”
Most recently, that has meant things like BORP’s new micro-mobility equipment loaner program, which lets people try out expensive new gear, like wheelchair attachments, before purchasing it—an idea Seelenfreund had after shopping for her own device.
“It also means there’s a real sense of community,” says Seelenfreund, noting that she is honored to follow Sygall’s lead as a young female director of the organization. “It’s not just a place where [people] exercise. It’s also a place, very often, where they find lifelong friends and connection.”
The tight-knit community makes Sygall emotional when she discusses her time in Berkeley. Deep friendships strengthened the organization’s work, she says, and vice versa. In 1977, when renowned disability rights advocate Judy Heumann, MPH ’75, co-led a group of activists to occupy a San Francisco federal building for 28 days in order to push through long-delayed anti-discrimination regulations, Sygall, Kaplan, and others from Berkeley didn’t hesitate to join the sit-in.
Sygall left BORP in 1978 to spend a year in Australia on a Rotary scholarship, but she says the people she met at the organization indelibly shaped her later work: In 1981, as a grad student at the University of Oregon, she founded Mobility International USA, based on the same principles. It, too, is still going strong, facilitating exchange and development programs for disabled people around the world. Sygall still serves as CEO and has no plans to retire anytime soon.
She will, however, take a few days off in October when she heads back to the Bay Area for BORP’s 50th anniversary celebration. Reflecting on the milestone, she’s been seeing “all the connections, and how powerful those moments were in Berkeley.”
One of the messages she hopes young people take away from her story is “the power of students creating projects.” Ideas conceived in school don’t have to stay there, she says. “Dream big and surround yourself with great people until those things come true.”
Emma Silvers is a longtime Bay Area culture journalist and cofounder of COYOTE Media Collective.
