Disability in the News: "Life on wheels an ongoing battle" (Bronx Beat)

By Christina Hernandez

cmh2133@columbia.edu

February 26, 2007

Esteban Santos Jr. and Nancy Leandro make a dashing couple as they zoom down Park Avenue South on the way to work at Independence Care System. Santos, 49, whose legs are withered from spina bifida, has a sturdy upper body from rolling his wheelchair through the streets of his Bronx River neighborhood. But in the Manhattan morning rush, Santos hitches a ride from Leandro, a petite 40-year-old with cerebral palsy, by holding onto the back of her motorized wheelchair.

City life for the disabled has improved since 1990 when a federal law guaranteed wheelchair users accessibility to public transportation. A lawsuit nearly 10 years ago forced the Metropolitan Transit Authority to improve Access-a-Ride, the van service for disabled people. The MTA has installed elevators in five Bronx subway stations and 25 Manhattan stations. More recently, the Parks Department hired Victor Calise, its first-ever accessibility coordinator.

From where Santos and Leandro sit, however, New York is still an unnerving place. Daily, they endure the stares of both children and adults and they miss elevators at Grand Central that are filled with people who could have taken the stairs. This, however, beats the time they spent 30 minutes trapped in a broken elevator at the Pelham Bay Park subway station. "It smelled like cheese," Santos said, crinkling his nose, "and I don't mean cheese you eat. I mean, like, toes!"

And assumptions about wheelchair users still keep the disabled on the defensive. Bobbi Linn, 56, founding executive director of the Bronx Independent Living Services, said despite her master's degree in rehabilitation counseling, people assume she has a mental handicap just because she's wheelchair-bound. "You can legislate laws," Linn said, "but you can't legislate attitudes."

Jermaine Deleston, 25, of Morris Heights, who has muscular dystrophy and is in a wheelchair, goes by the stage name Poppa Wheely. Deleston has been instrumental in bringing crippled hip-hop, or "krip-hop," to the Bronx through his appearances at clubs and parties. He said his music isn't just about disabled life, but he uses it to dispel assumptions that black men in wheelchairs are disabled due to violent lifestyles. "In my music, I let them know that wasn't the case for me," he said, "and that's not the case with a lot of people."

Wheelchair life moves in slow motion. It takes Santos and Leandro two hours to get to work. Their trip should be as simple as 50 minutes on the No. 6 train, but instead they must take two city buses, a Metro-North train and another city bus. That keeps them from working a full eight-hour day. And two weeks ago, when snow made the streets a slushy mess, the couple couldn't even cross the street.

Calise, the Parks accessibility coordinator who is also a wheelchair user, wants to make disabled life easier. He hopes to have wheelchair-accessible softball and football fields in the Bronx by the summer. "We want more people with disabilities to use our parks," he said. "If someone with a disability is in a park, people will see they can play sports and do other things." Calise will also advertise wheelchair-accessible recreation centers (Hunts Point, St. James and St. Mary's).

Also new is a 24-hour, seven-day-a-week hotline that stranded wheelchair users can call for help, said Michael Harris, campaign coordinator for the Disabled Riders Coalition. "We get the bulk of our late night emergency calls from the Bronx," he said. Call 800-239-4216 to get public transportation directions home.

Leandro, however, thinks more needs to be done. As it is, she prays her wheelchair battery doesn't die every time she goes through a puddle at the foot of a curb cut. "Most of the disabled people," she said, "they're on their own."