Even before she arrives in the nation’s capital this weekend to celebrate the 25th anniversary of the Americans With Disabilities Act, Dot Nary is already in what she calls fight mode.
Because when your legs are wheels, getting around is always a bumpy ride fraught with obstacles.
From the moment she gets to the airport, makes her way onto a plane, hails a taxi, rolls into a hotel or visits a restaurant, Nary, 59, is faced with the many ways the man-made U.S. landscape is still inhospitable to those with disabilities.
No, the squishy seat cushion she needs to prevent pressure ulcers is not a weapon to be stored away on takeoff.
No, the trend of super-high hotel beds does not work for getting in and out of a wheelchair.
And, no, you can’t advertise that all your tour buses welcome wheelchairs, then be magically booked for days on end to the one person in a wheelchair trying to make a reservation.
This is the state of America — a country where about 38 million people have a serious disability — a quarter-century after passage of a landmark civil rights law that was supposed to make their lives easier. But as Nary and others with disabilities can tell you, it hasn’t always worked out that way.
Born with spina bifida, Nary was confined to a wheelchair when she was 30, just as the disabilities rights movement was gaining momentum. She fought for the passage of the ADA in 1990 and was at the White House when the act’s fifth anniversary was celebrated.
An assistant research professor at the University of Kansas in Lawrence, she has spent the past 25 years advocating for the independent living movement, helping people with disabilities find ways to navigate not only physical barriers, but also ethical quandaries.
The ADA is responsible for curb cuts, ramps, Braille lettering and lifts on city buses, among thousands of other changes. But the stories you hear about the law usually have more to do with businesses and governments kvetching about the cost of compliance, rather than the hundreds of thousands of places still inaccessible to folks who move differently than the majority.
Think that’s not the case? Check out this subway map of New York City, rendered to show only the stations that have wheelchair accessibility. It looked as sparse as the scalp under Donald Trump’s comb-over.
Cases of noncompliance are mountains to climb nearly every day, Nary said. She doesn’t need a graphic to tell her that.
That’s where the ethical dilemmas come in. How often should those with disabilities fight when they come to a roadblock?
“You have to know your rights. These aren’t random, insignificant events. Sometimes, these are health issues,” she said.
“But it’s just as important to know you can’t live in ‘fight mode,’ ” she said.
“You can’t spend your life filing complaints,” Nary said. “Usually, if it’s a mom and pop store, I’ll educate them, but leave it there. Some buildings were built so long ago.”
“But if it’s a big chain or something national, they know better,” she said.
Her latest fight is with a tour bus company.
Planning her trip to Washington for a conference and the ADA celebration, Nary called OnBoard — a big outfit that runs tours across the country — to book one of Washington for herself and the grad student working with her, who also uses a wheelchair.
Turns out, she can’t.
Though OnBoard writes on its Web site that its regular buses are not wheelchair-accessible, it also promises that it can line one up if tourists call ahead of time. But Nary found that was not case.
This is how her phone call went, she said.
Nary: I’d like to make reservations for three people, two of us use wheelchairs.
OnBoard: Oh, we don’t have a bus for you.
Nary: It says you do on the Web site.
OnBoard: Oh, we lease our buses.
Nary: But you are still required to have lifts.
Tom Schmidt, chief executive of OnBoard, said that the company leases the buses it uses for tours, and that’s the reason the agent told Nary that the buses don’t need to be wheelchair-accessible.
“However, we always offer customers the opportunity to take the tour on a wheelchair-accessible vehicle, if we can obtain one for the tour. Usually, that takes a couple days’ advance notice,” he said. “Many of our customers are veterans who are in wheelchairs, scooters, walkers, etc., and we frequently accommodate persons with those situations.”
But Nary said she gave OnBoard plenty of advance notice and that her request was met with indifference.
For her, on an anniversary the whole country should be marking, it was a sobering reminder of all the ways ADA compliance continues to fall short. “We still,” she said, “have a long way to go.”