GRASSROOTS PROFILE: Whirlwind on Wheels Wants Access for All by Martha E. Ture Many of us take our ability to hike for granted. We may worry about the shrinking great outdoors, but we still get out there and enjoy it whenever we can. People with disabilities, however, don't always share that privilege. For much of the population -- from those who depend on wheelchairs or canes to those who are slowed down by age or children -- the natural world can be as remote and difficult to reach as the top of Mt. Everest or the bottom of the sea. Phyllis Cangemi devotes her life to opening outdoor recreation areas to people of various abilities. Through her efforts, parks around the San Francisco Bay Area are becoming increasingly accessible. A nature trail through the redwoods, a fishing pier and promenade at San Francisco Bay and a ramp for swimmers using wheelchairs to get into the water, a path at a shoreline park: All are accessible now as a result of Cangemi's work. Soon it will also be easier for disabled nature-lovers to tour the John Muir National Historic Site in Martinez and to travel over miles of trails at Point Reyes National Seashore. And recently Cangemi broadened her reach by serving as a contributing editor to "Access America: An Atlas to the National Parks for Visitors With Disabilities." "Everything she does is geared toward making the outdoors accessible to as many people as possible," says long time friend Debbie Wright. "Nature is something she has a lot of reverence for, and she's doing work to help people have contact with nature." "It's exhausting trying to keep up with her," says Peter Brand of the California State Coastal Conservancy, who has worked with Cangemi for several years. "She's enormously energetic." Indeed, though a small and physically frail woman, Cangemi radiates energy: An afternoon in her company can feel like time with a whirlwind. But Cangemi's seemingly tireless dedication to her mission is compounded by the urgency of her own illness. Because she has Hodgkin's disease, a degenerative cancer of the lymphatic system, she does most of her consulting from a three-wheeled scooter and much of her paperwork in bed. Sometimes her exhaustion shows and her body slumps like a wind-up doll run down. She rests -- and then takes on larger projects. "I just deep going as long as I can," says Cangemi, who emphasizes the different abilities each of us has rather than the disabilities. "We're all only temporarily able-bodied. At some point in our lives, everybody in this society is likely to be mobility impaired, whether from injury, illness, pregnancy, or just plain aging." Cangemi never set out to be a trailblazer for people with disabilities. To hear her tell it, she just happened into the role. It might be fair to say that her work evolved from her character: She's been dealt a difficult hand in life, but she's playing her cards for all they're worth. Cangemi's odyssey began in Levittown, New York, where she grew up near the outer edge of a vast inland sea of Long Island suburbia. She was no more than three years old when she began to explore. "On the other side of the road was another world," she says. "There were a few acres of land left to farming, an old farmhouse -- and an old man." The old man set up a swing in a tree, Cangemi says, and she used to visit and talk with him. It was from such wild seeds that dreams grew. Cangemi, whose mother was sick during much of that time, deliberately sought pleasures on the outskirts of Levittown, in the woods and fields around the farm. She learned to love the outdoors and its creatures and befriended a boy who liked insects. When her father took the family camping in the Adirondacks, she reeled in the mountains, forest, and lakes. In College, Cangemi had what might be considered an ideal life. She was a pre-med student at Columbia University, happily married to a man who shared her enthusiasm for nature; the two would camp in the Catskill Mountains, hiking the Appalachian Trail and swimming in lakes. The future looked fine and welcoming. But then things began to change. Her husband, Tom was diagnosed as having Hodgkin's disease in 1976 and nearly died of the illness two years later. Within a year of that near-fatal crisis, Cangemi, too, was diagnosed with Hodgkin's -- a "statistical coincidence," doctors have told her. The couple spent increasing amounts of time in hospitals, undergoing treatment that included intensive chemotherapy and radiation. Cangemi was exhausted; try as she might, she couldn't keep up the pace at the university and had to drop out. The couple moved west, and Tom went to Los Angeles to be near his parents, while Cangemi received treatment at Stanford Medical Center in Palo Alto, the nation's premier Hodgkin's treatment center. Less than a year later the doctors at Stanford released her, saying they had done all they could. The disease was not in remission, though its pace had slowed somewhat. One day in 1982, a friend took Cangemi to the hospital; she was delirious from a fever. Believing he was acting in conformance with her wishes, the friend refused to tell Tom where she was when he called from Los Angeles. Nobody knows exactly what happened, but apparently Tom drove to the Bay Area, failed to find his wife, and in despair, turned back south. His Car was found parked at the edge of the Pacific Ocean near San Luis Obispo, his body washed up not far away. Cangemi awoke from her fever to find herself a widow at 35. So there I was, lying in bed in my house waiting to die," says Cangemi. But such passivity hardly suited Cangemi, who had always "reached out in life and wanted to do a lot of things," according to Wright. If she could no longer direct her energy toward her medical studies, she would direct it somewhere else. From her bedroom window in Menlo Park, south of San Francisco, Cangemi could see one bit of open space: The Hill. At the time, Wright was involved in a local land-use-battle to save The Hill from development. She was circulating petitions in an effort to collect as many signatures as possible -- but time was running out, and she would come home tired and depressed because of the campaign. Cangemi, who hated to see her friend so blue, wanted to help. "I was too sick to carry petitions, " she recalls, "but I could make phone calls." So she phoned people to try to elicit public support and encourage the surrounding communities to work together. The campaign failed -- condominiums went up on the property -- but meanwhile Cangemi had entered the public arena and become involved in helping other people. She had also met Linda Wagner, then a graduate student in environmental biology at San Jose State University. Wagner had written a trail guide for people with visual or mobility impairments as her master's thesis, and Bill Lawrence, head ranger at San Mateo County Memorial Park, had agreed to adapt a trail to meet the needs of that group. Lawrene had organized volunteers and brought in the California Conservations Corps to build blacktop surfaces, put up ropes, and post signs and trail markers in braille. When Wright and Cangemi attended the trail dedication, Wright volunteered to help with maintenance. Lawrence asked her instead to find trail interpreters and act as a liaison between the users and the interpretive personnel. Although Wright agreed, when it came to calling total strangers and telling them what to do, she froze. Not Cangemi. "I saw her dithering over the phone lists, night after night, and not being able to bring herself to make those calls" Cangemi says. "So I did it. I've never been shy about calling people and asking for something." As a result she became a docent coordinator, helping to train interpreters who could work with people of different abilities. "I never intended to become the central figure in this,: Cangemi says. "It just happened." "Phyllis is being too self-effacing," Lawrence says. "This project could neverhave happened without her energy and commitment. Lots of people talk about good ideas, but Phyllis get people to do things." The next thing that "just happened" grew out of Cangemi's sense of responsibility to disabled trail users. If she were going to act as liaison between park staff and park users, she had to know what kinds of problems people had and what they needed. So she began to make more phone calls. "I found that there was a lot of frustration among disabled people, " Cangemi says. "They didn't know which parks were accessible. So I started calling other parks to find out." She found that not even park staff were certain which parks were accessible or to what degree. To bring park and recreation personnel and disabled user together, Lawrence suggested a workshop to discuss what was needed. Cangemi organized the program, contacted participants, and set the format. "That 1983 workshop led to a series of training programs," she recalls. "We found so much that needed to be done. Park personnel really were not aware of a lot of 'little' things, like gravel surfaces, which are impossible for wheelchairs. Then there were the questions of restrooms, drinking fountains, curb cuts, slopes, trail width for chairs, access from parking lots ... There was a lot of confusion." There were also federal laws that required all facilities and programs supported by federal funds be made accessible to disabled users, and state laws requiring that all facilities serving the public be accessible. But the vagaries of regulation did not always match the actual needs of people; while the laws are specific regarding public buildings, for instance, they gave little detail about parks. Parks managers, who were just becoming aware of the laws, went eagerly to the training sessions to hear what Cangemi had to say. Cangemi found herself, of necessity, becoming an expert in a field where there was little expertise. Since the original workshops, Cangemi has organized a nonprofit group, Whole Access, that works with park personnel to increase accessibility. The group helps evaluate accessibility within the parks and consults with staff to design facilities and nature programs that will accommodate people with different physical, cognitive, and emotional abilities. As a design consultant, Cangemi visits parks and explores miles of trails on her electric scooter. She is the unpaid executive director of the organization, which is run almost entirely by volunteers and supported largely by grants. Even after park staff decide on a program to implement, they can find support in the next step -- soliciting funds -- from Whole Access. While Cangemi's clients may intend primarily to comply with the law, she wants to open as much of the outdoors to as many people as possible. Since 1983 her workshops and training sessions have reached park personnel from all over the West, including some from the National Park Service, Bay Area park districts, and the city of San Francisco. Cangemi is also a member of the State Department of Parks and Recreation's Accessibility Task Force. She has worked with the California State Coastal Conservancy, which funded five accessibility projects supported by Whole Access in parks around San Francisco Bay, and she just finished working with the National Park Service on a master plan for increased access to trails, buildings, and interpretive programs at Point Reyes National Seashore. Now she is excited about Access America, which she sees as a first step toward promoting accessibility nationwide. Published in June by the Northern Cartographic Company in Burlington, Vermont, the guide covers 37 national parks. Recently, Cangemi helped the staff at the John Muir National Historic Site put together an access plan. She first became interested in the Muir house and its gardens soon after coming to California. Site Superintendent Phyllis Shaw showed her around the house and took her through the orchards, where park staff give away fruit when it's ripe, explaining the John Muir would have done so. "The whole time you're there, you feel like you're with John Muir," Cangemi says. "Every time I've been there it's been the same way. You feel like you want to run off to the Sierra." Cangemi herself is a " modern-day John Muir," says Steve Burke, a ranger at the Muir house. "They share the belief that contact with nature is a necessity for everyone. Phyllis came here and pointed out all the troubles that people with mobility problems have in experiencing this monument to the man who means nature." Staff at the site hope to increase accessibility at the house and the visitors' center by smoothing the grade in a trail from the parking lot to the house and by making thresholds easier for wheelchairs to cross, among other things. The work cannot be completed, however until funding is found, a difficulty that troubles Cangemi. Whole Access is currently working to help find the necessary money. What's next for this indomitable spirit? "I'll just keep working," Cangemi says. "I'd like to see disabled people able to do more things independently, not just in organized groups. I'd like to ride a horse up into the Yosemite backcountry sometime. But I don't have time to recreate, really. I'm too busy."