Paralyzed travelers offer glimpse into what it takes to hit the road
Corrections & Clarifications:A previous version of this story misstated Anne Robinson’s last name.
Shaun Castle cannot imagine a life without travel.
“I love seeing the world. For me, there’s no bigger fear than I’m stuck at home staring at a wall,” he said. However, it’s not easy as a paraplegic.
“There’s no room for spontaneity. There’s no room for surprises,” he said. “Every single portion of my traveling life – and pretty much my life in general, but my traveling life especially – is planned out.”
The same goes for Anne Robinson, who is quadriplegic.
Both are Army veterans who were paralyzed in training exercises years ago. For Castle, it was an L4 spinal cord injury in Heidelberg, Germany, in 2003. Robinson broke her neck at C4, 5, 6 in a training exercise in Alaska in 1999. Now they both work with Paralyzed Veterans of America, which describes itself as “the only nonprofit Veteran Service Organization dedicated solely to helping Veterans with spinal cord injuries and disorders (SCI/D), and diseases, like MS and ALS.”
“We want to enjoy things like everybody else,” said Robinson, a national vice president for PVA.
PVA helped push for the Americans with Disabilities Act, which became law on July 26, 1990. Thirty-five years later, the organization says barriers still exist.
Robinson and Castle shared a glimpse of the hurdles they face with travel.
Hitting the road
Robinson travels upwards of 25,000 miles a year, all by land.
“I can’t fly. I’ve attempted twice,” she said.
One time, her shoulder was dislocated during a transfer. The other time her wheelchair was damaged, and as she called it, “dead on arrival.”
“I don’t take any chances anymore,” she said. “It’s too dangerous for me to try to get on a plane.”
Her husband, a former trucker, does all the driving.
“The first thing that we look at is the actual route. How many days is it going to take us to get there?” she said, adding that they always build in extra travel time for unexpected hiccups.
She can only handle about 8 hours or 350 to 400 miles a day in their van.
“My husband starts checking the weather way out,” she said, to plan around possible delays. He also looks for construction and other issues that could impact their drive.
“Potholes and things (like that) really affect me, the bouncing and the hard hits,” she said.
Those can’t always be avoided, but they’ve found other types of workarounds.
“We haven’t found family-friendly bathrooms any place that we’ve stopped, so I use a urinal and he empties when we’re out away from folks,” Robinson said.
Even when there are wheelchair-accessible stalls, she said, “You don’t know if the door or the way the toilet in the center is in the right place, where you can maneuver your chair … things that we run into that a lot of folks don’t even think about.”
Taking flight
Castle’s biggest challenge is air travel. He travels about two weeks each month as PVA’s chief operating officer. If he can drive to a destination in less than eight hours, he does so to avoid flying, but for most trips, he flies.
When booking flights, he pays close attention to connections and layovers. He prefers to have about an hour and a half between flights so he can deplane, collect his things, put his equipment back together, use the restroom, rehydrate and get to the next gate with plenty of time, in case anything goes awry.
“Since I have no access to a bathroom on a plane, I have to dehydrate myself two to three days in advance because I can’t risk having an accident on the plane,” he said.
He packs wipes and extra clothes, just in case. He also brings his wheelchair, a seat cushion, side guards, and his adapter power device on board. According to the Department of Transportation Airline Passengers with Disabilities Bill of Rights, “Priority in-cabin stowage (either a closet or a row of seats designated for seat strapping) must be available for at least one normal-sized collapsible manual wheelchair in any aircraft with 100 or more passenger seats.”
“There is nothing worse for me than them accidentally checking my wheelchair all the way through because then I have to risk being on an aisle chair or risk being on an actual airport chair, hospital chair, which could be any million different ways damaged or not upkept to where the bars or the padding are gone or whatever the case may be, and it can be dangerous. I can get sores,” he said. He knows people who were left in airport wheelchairs too long, who then developed pressure sores and had to be hospitalized. “That is literally life-threatening.”
Aisle chairs, those narrow wheelchairs with rigid backs that fit down airplane aisles, pose a different danger.
“When you get on a plane, they’re not level to where the gate is … so literally they have to tip you back and you’re in the hands of– it’s almost like a trust fall,” he said.
Robinson said she knows horror stories of people being dropped or having their wheelchairs broken.
Airlines are subject to penalties for mishandling mobility devices. Still, Castle noted, it’s not just damaged property: “If something happens that damages your wheelchair, you’re literally taking my legs away from me.”
Getting around
While getting to destinations presents a host of challenges, getting around them poses others. Cabs, rideshares, and public transportation are not always accessible.
“Just because you have a minivan doesn’t mean I can physically get in and out of that minivan,” Castle said. “I have my wife – my caregiver – with me at all times, and she is a lot of the time having to deadlift me in and out of taxis and hoping that something doesn’t go wrong.”
He prefers renting cars.
“If it goes correctly, it’s the best thing because we can show up; I know I have a safe mode of transportation,” he said.
He always calls ahead to the rental car company’s accessibility desk to request an automatic car with adaptive driving devices, such as a spinner knob. However, he said they aren’t always available when he arrives, even though he has been assured they will be. In those cases, his wife can step in.
“If I were a disabled traveler who was by themselves, what do you do?” he asked. “They’re literally just stuck.”
Accessible accommodations
Lodging can pose other difficulties.
PVA notes that hotels built after January 26, 1993, are required to offer accessible accommodations under the ADA.
However, Robinson said, “No matter where you go, one hotel room is not like another hotel room, so there’s no standardization,” and what’s accessible for some may not work for others.
“The width or the depth of a shower, it makes a whole lot of difference (in) whether or not you can get in it, or if there’s a slant … or there’s a little lip and your chair won’t go over it,” she said. “I can’t use a bathtub. Doesn’t do me any good.”
She wishes a few more things could be added to the ADA.
“Without any incentives to make it better, usually the minimum is what they try to do,” she said.
Some hotel chains have accessibility desks to help travelers with disabilities, but hiccups still happen.
Both she and Castle have had their rooms given away to others or found the rooms don’t suit their needs. At least once a trip, Robinson said she and her husband have to scramble to find alternative lodging, but they keep moving forward.
“Having the spinal cord injury, being a paraplegic, will not stop me from seeing the world, from being a part of the world,” Castle said. “I will always travel until I can’t.” (This story has been updated to correct an error.)
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