GETTING THERE FROM HERE

Some large cities have accessible light rail service.

by Jennie Borodko Stack

There's an old joke about a tourist lost in a remote area of Maine seeking directions to Boston from a reticent and little-traveled Yankee, who replies, "You can't get there from here."

But it's no joke when you can't get to work, school, medical appointments or community activities because of a lack of accessible public transportation.

A recent Quest survey revealed a wide range of transit experiences for people with neuromuscular diseases across the country. To get around town, some people take their wheelchairs for short excursions, and most use accessible public buses, vans or commuter rail. When fixed-route transportation won't do, van services (known by such names as paratransit, VanTran, or Handi-Van) provide curb-to-curb or door-to-door service, allowing users a less expensive alternative to taxicabs.

Interviews with some Quest readers showed that many have faced major challenges and even hardships as consumers of adapted public transportation. Most of their concerns focused on equipment, scheduling, pickup procedures and costs. Following is a selection of reader experiences that reflect the good, the mediocre and the utterly wretched.

NIGHTMARES

"It was a nightmare. It really hasn't gotten a whole lot better," Chad McCruden, 28, says. The Baltimore resident was describing the public transit system he used for a month during a Washington internship four years ago. He now deals with the public policy aspects of transportation as a researcher for the Baltimore County Commission on Disabilities.

Malfunctioning lifts, or no lifts at all, chronic lateness and an inadequate number of vans all contributed to riders' misery in Washington, he says.

"The whole [D.C. area] paratransit system is really not reliable. But it's the only game in town, so if you need to rely on paratransit, you just need to bite the bullet," continues McCruden, who has Friedreich's ataxia and uses a power wheelchair. "Just understand that you're not necessarily going to be picked up on time, or brought where you need to be on time."

In the most extreme cases, unreliable public transportation, inadequate equipment or poor planning has resulted in serious injury and even death.

Paul Martin of North Las Vegas, founder and director of Nevadans for Equal Access, lost a friend two years ago because a city street with a fully accessible bus stop lacked a sidewalk. After disembarking from a local bus (in a city generally regarded as among the nation's most accessible), the man was driving his wheelchair on the side of the road — the only place available in the absence of a sidewalk. A large truck turning the corner hit the wheelchair user, who was fatally injured.

Tedde Scharf, 59, of Tempe, Ariz., was left with permanent injuries from an accident in 1998. A wheelchair lift on a public bus malfunctioned with Scharf on board, and she fell 4 feet and landed face down, her head spared from crashing on asphalt by the front of her power wheelchair. (Scharf has limb-girdle muscular dystrophy and uses a ventilator full time.)

She sustained multiple fractures and, in a four-month convalescence that included several weeks of immobility, permanently lost valuable upper-body strength. The resulting lawsuit for coverage of her enormous medical expenses reached a "fair settlement" earlier this year.

BACK ON THE BUS

Yet both Scharf and Martin still believe in and actively support public transit.

"I went right back out as soon as I was able to get back in a wheelchair and sit up enough," Scharf says. "We propped me up with pillows and pads. As soon as I could, I started riding the bus because I knew I had to do it."

Each weekday, she takes a lift-equipped public bus from her home to her office as director of Disability Resources at Arizona State University. Though Scharf owns an adapted van she uses for longer trips, she prefers a public bus for commuting to and from work and traveling to business meetings in nearby Phoenix.

Martin, 50, generally gives the Las Vegas system high marks. "Overall, I would rate it as an 8," he says, although it's not completely satisfactory. Martin faces challenges posed both by transit policy and by his unusual physical symptoms. He has periodic paralysis, which causes his level of weakness to vary from day to day. "I never know when I'm going to have a bad day."

Because of that fluctuation, the local paratransit service has certified him as "conditionally" eligible to ride. The problem is that no one seems to know what that means.

"There is currently no specific method for determining whether a conditionally eligible rider may use the system on any given day," Martin says. "The evaluation system has been bogged down in red tape for five years that I know of." Frustrated by the lack of resolution, Martin says, "to heck with it, I'll use fixed route or pay for a taxi."

Still, Martin remains committed to the idea of city transit and uses it when he can.

SATISFACTION

On the plus side, survey respondents gave high marks to well-trained drivers, round-the-clock service in major cities and accessible stops in some cities. Many also appreciate inexpensive van services (up to $1.50 per trip), while some are grateful to have any public means of local travel at all.

Former nurse Bobbie Jeanne Kennedy of Boise, Idaho, has progressive muscle weakness, particularly in her hip area, because of acid maltase deficiency. She relies on an extra high wheelchair and the low-cost public van service, Access.

City-operated van services provide door-to-door transportation, but require reservations.

Despite inconvenient schedules and limits placed on the assistance that van drivers can offer, Kennedy says, the service is "pretty decent, and the people are trained and know what they're doing."

Kennedy is reluctant to take a taxi because of her experience with poorly equipped vehicles and badly trained cab drivers, not to mention the high cost. "If there wasn't any public transportation, I'd be up a creek," she says.

Cecelia Jones, 59, of Wenatchee in central Washington, is fairly satisfied with her community's transportation system, at least on weekdays.

The former teacher, who has limb-girdle muscular dystrophy, drives her power wheelchair to visit friends and relatives up to 2 miles away, in good weather.

The local transit system (comprising buses and accessible vans) takes her most places on weekdays, though ideally she'd prefer to have evening and weekend travel as well. She'd also like to see better placement of bus stops to ensure riders' protection and access during snowy winters.

Living in her small community has some advantages to residents with disabilities, she says. "The [van] drivers in Wenatchee use their own judgment as to who needs the help and who doesn't. The drivers in this community, because we're a small community, pretty much know which clients can make it in and out on our own," Jones says.

CHOICES

Faced with a wealth of choices to match the size of the metropolis, Carlos Mitchell, a 25-year-old, full-time student from Gardena, Calif., has figured out how to negotiate the transport systems of the Greater Los Angeles area.

Mitchell has a congenital myopathy and uses a power wheelchair. To attend daily classes, he travels to West Los Angeles College in Culver City — 18 miles across the San Fernando Valley — using four fixed-route buses and the Metropolitan Transportation Authority light rail service.

Tedde Scharf uses the city bus service to go to and from work. She says getting to know drivers can help to ensure personal safety.

By car, cab or Access Paratransit, the one-way trip would take 20 minutes; instead it's an hour and a half via a meandering, but accessible, itinerary. The longer method, though time-consuming, is less expensive — only $1 per day compared with $5 daily for paratransit.

With an array of choices that includes 24-hour-a-day paratransit service, Mitchell has greater access to transportation than do those in less urban areas, and he takes full advantage of it.

"A lot of times I go out at night, clubbing. Since the buses are no longer running [when I leave], I have to take paratransit home," Mitchell says.

If he's appreciative of paratransit, Mitchell is also sparing in his use of it. "I try to use public transportation as much as I can because of the cost of paratransit," Mitchell says. Use of Los Angeles public transit is free to those who have an Access Paratransit ID, and when you're on a fixed income the savings are important, he says.

DRIVERS MATTER

Her local curb-to-curb adapted service is improving, says Sue Benzinger, 62, of Cincinnati, who uses an electric scooter because of Charcot-Marie-Tooth disease.

But over the years, the veteran rider of Access, the city's van service, has observed some behavior that still galls her.

She recalls a contemptuous remark made by a driver to someone who complained about the van's late arrival: "You [disabled] people don't have anything to do anyway." Benzinger, who uses the accessible van to commute to and from her job at the Cincinnati Public Library, was deeply offended, both as a commuter and as a taxpayer.

But she says a new general manager has brought about some positive changes, including a new respect for riders. She's optimistic about other improvements as well because the new manager has "actually been riding the van with some of the riders that have had problems in the past."

In spite of the rare instance of driver rudeness, Benzinger says that, in general, drivers deserve praise for diligently performing a difficult job.

Drivers can be the greatest ally of a person with a disability who's traveling alone. Scharf says befriending drivers is an excellent way to ensure your personal safety while using public transit.

"One of the keys, I think, to successfully using the bus system or any public transit is to reach out to the drivers," she says. "Be responsive, talk to them, let them know who you are.

"I've gotten so well acquainted with so many bus drivers that if the buses go by anywhere in Tempe and they see me on the sidewalk, they toot their horns and wave. That's building a network of protection, because I'm probably pretty vulnerable out there. They'll watch out for me."

An Ongoing Project

Bus and paratransit users seem to find that successful public transit systems for people with disabilities result from the efforts of many people of good will — drivers, riders and system operators.

Perhaps one day, taking the bus will be a treat, or at least an uncomplicated experience. For now, most users would agree with the sentiment expressed by Carlos Mitchell: "I hope that one day I won't have to depend on public transportation, that I will want to take it, and not have to take it."

For information on how to advocate for yourself in public transit matters, or to compare your local system with ADA standards, see "Traveler's Log."