A Trip to Dance

     By Emily F. Keller

    As Clara Bailon pushed over sidewalk cracks outside her home in the Bronx, she told stories about the old days.

    She remembered being left on the curb on her way to the beach with friends by a bus with a broken lift in the 1980s. She recalled quitting her job at a bank in lower Manhattan after graduating from college because glitches in the transit system made it difficult to show up on time. She talked about harassment and indifference from transit workers and commuters. She remembered being tripped over on the subway stairs during rush hour.

    “You have to learn to be a little assertive having a disability,” Bailon said about her experience with Access-A-Ride and the subway and bus systems.

    Bailon has spent decades asserting herself within a complex transit system that expands its accessible options gradually but incompletely. She praises the “good Samaritans” who have stepped in where the system falls short, lifting her wheelchair over gaps between subways and platforms where wheels sometimes stall, and offering directions to accessible subway stops that comprise less than one-fifth of the subway system.

    Bailon, who has fixed growth from a medical condition called Larsen syndrome, met her sister, Isabel, at the Bx15 bus stop that morning to travel to a belly dancing class for people with physical challenges at the New York University Hospital for Joint Diseases, which Bailon attends regularly. Isabel also has fixed growth. She travels in a manual wheelchair pushed by the sisters’ personal care attendant, Merci, while Clara controls her movement with a power wheelchair.

    The Bailons bypassed the first bus that stopped because a customer with a wheelchair was already on board. City buses have two wheelchair spaces where seats collapse and seatbelt straps hold disabled passengers in place. They took the next bus, where two spots were available.

    Together the Bailons traveled with Merci to the 149th Street Grand Concourse transit hub to transfer to the downtown 4 train, where they took an elevator into the station.

    When they reached the platform, Clara raised her chair and her voice to get the attention of the subway booth attendant, whose ticket window blocks her view of people with short stature. “Hello! Hello!” she said. She bought two MetroCards.

     The trip to 17th Street should take an hour and ten minutes for customers without challenges, and up to half an hour longer for an accessible trip, according to the Metropolitan Transportation Authority's Trip Planner. Clara allocated two to three hours for the trip, citing past experiences including elevator breakdowns and having to wait for her personal care attendant to catch a second bus after the first one drove off without her.

    The Bailons and Merci exited at Grand Central, where Clara began waving her blue banner to passing cars that reads, “Please Give Me the Right Away.” The banner is part of her campaign to educate drivers about pedestrian safety in response to an accident she had in 2002, when she was struck by a taxi.

     Bailon recently took her campaign to the New York City Marathon, where two volunteers from the Rusk Institute of Rehabilitation Medicine pushed her through the race in a wheelchair in five hours and twenty-seven minutes. The Achilles Track Club, which recruits and trains athletes with disabilities for the race, set up the arrangement.

    “I was just sitting pretty like Miss America waving to the crowd and waving my banner, but my arms were sore” Bailon said after the November 1st race, which was her first marathon.

    Bailon values her mobility and travels often. “I don’t want to be a recluse,” she said. “Maybe you wonder why I go out, with all the trouble. Like I say, disabled people have things to do, people to see and places to go. And we want to have fun too.”

    Still, she worries about terrorism, being pushed on the tracks, being stranded on elevators or getting stuck in the subway doors and dragged.

    "I try to limit my travels on the subway because in the case of terrorism or a natural disaster, someone in a wheelchair is going to get trapped there and we’re going to die," she said. “After the accident I’m always thinking the worst."

    At the end of an elevator ride, Bailon experiences great relief. “When I’m in the elevator up on the street, I feel like OH I MADE IT!” she said.

     Bailon takes the subway up to once a month and usually travels by bus or Access-A-Ride to avoid elevator and gap problems.

    On this trip, the Bailons were successful and arrived early at their class one bus ride later with no transportation mishaps.

    The sisters adorned themselves with jewelry along with half a dozen other female dancers, several of whom use wheelchairs, and began to dance using their arms and hips. Isabel, who was quiet during the trip, began to smile.

    “I like it because mostly I have to learn to breathe,” Clara said about the class later.

    On their trip home, the sisters again waited for the first Bx15 bus that arrived to pass because another passenger with a wheelchair was already on board. They boarded the second bus and exited in a rainstorm.