Cory Lee had a flight to catch from Atlanta to Johannesburg. And like most travelers, he spent the day before getting ready for the big trip — not only packing his bags, but also refraining from food and water. It’s the only way he’d be able to make it through the 17-hour journey.
“I just don’t use the bathroom on the plane — it’s the worst part of flying for me and every other wheelchair user,” says Lee, who has spinal muscular atrophy and blogs about his experience traveling the world in a powered wheelchair at Curb Free with Cory Lee.
“I could use an aisle chair to transfer from the plane seat to the bathroom, but I’d need a companion in the bathroom to help me and it would be impossible for us both to fit in the bathroom. By the time I got to South Africa, I was ready to drink a gallon of water.”
Figuring out what to do when nature calls in flight (or preventing that call altogether) is just the beginning of what travelers with disabilities need to think about.
The majority of this planet hasn’t been designed with the needs of different body or ability types in mind, and getting around it can leave travelers in dangerous and humiliating situations.
But the travel bug can bite just about anyone — and jet-setting wheelchair users take on a sea of logistical challenges to fulfill their desire to see the world, racking up frequent flier miles and passport stamps along the way.
Here’s what it’s like to travel when you have a disability.
“It’s not the destination, it’s the journey,” is a favorite mantra among travelers. But this quote can also apply to the hardest part of traveling with a disability.
Flying, in particular, can cause emotional and physical stress when you use a wheelchair.
“I try to arrive at least three hours before an international flight,” says Lee. “It takes a while to get through security. I always have to get a private pat-down and they need to swab my wheelchair for substances.”
Getting on the plane is no picnic, either. Travelers work with airport staff to transition from their own wheelchair to a transfer chair before boarding.
“They have special seatbelts [to keep you safe in the aisle chair],” says Marcela Maranon, who became paralyzed from the waist down and had her left leg amputated above the knee after a car accident. She now promotes accessible travel on her Instagram @TheJourneyofaBraveWoman.
“The staff will help. Some of these people are very well trained, but others are still learning and don’t know where the straps go. You have to be really patient,” she adds.
Travelers then need to move from the transfer seat to their plane seat. If they can’t do it on their own, they may have to ask someone from the airline crew to help them get into the seat.
“I don’t normally feel unseen or unvalued as a customer, but when I’m flying, I often feel a lot like a piece of luggage, getting strapped into things and pushed aside,” says Brook McCall, grassroots advocacy manager at the United Spinal Association, who became a quadriplegic after falling from a balcony.
“I never know who’s going to be there to help lift me to and from the seat, and they don’t normally put me in right. I feel unsafe every time.”
In addition to worrying about their physical safety, travelers with disabilities also fear that their wheelchairs and scooters (which must be checked at the gate) will be damaged by flight crews.
Travelers often take extra precautions to minimize the risk of damage to their chairs, breaking them down into smaller parts, bubble wrapping delicate pieces, and attaching detailed instructions to help crew members move and store their wheelchairs safely.
But that’s not always enough.
In its first-ever report on the mishandling of mobility devices, the U.S. Transportation Department found that 701 wheelchairs and scooters were damaged or lost in 2018 from December 4 to 31 — an average of 25 per day.
Sylvia Longmire, an accessible travel consultant who lives with multiple sclerosis (MS) and writes about traveling in a wheelchair at Spin the Globe, watched in horror from the plane as her scooter was damaged by crews trying to load it on a flight from Frankfurt to Slovenia.
“They were shoving it along with the brakes on and the front tire came off the rim before they loaded it. I worried the whole time. It was the worst plane ride,” she says.
“Breaking my wheelchair is like breaking my leg.”
— Brook McCall
The Air Carrier Access Act requires that airlines cover the cost of replacing or repairing a lost, damaged, or destroyed wheelchair. Airlines are also expected to provide loaner chairs that travelers can use in the meantime.
But since many wheelchair users rely on custom equipment, their mobility may be severely limited while their wheelchair is getting fixed — potentially ruining a vacation.
“An airline once broke my wheel beyond repair and I had to fight with them a lot to get compensated. It took them two weeks to get me a loaner chair, which didn’t fit into the locks in my car and had to be tied down instead. It took [an] entire month to get the wheel,” says McCall.
“Luckily it happened when I was home, not at the destination. But there’s so much room for improvement. Breaking my wheelchair is like breaking my leg,” she said.
Traveling on a whim usually isn’t an option for people with disabilities — there are just too many variables to consider. Many wheelchair users say they need 6 to 12 months to plan for a trip.
“Planning is an incredibly detailed, painstaking process. It takes hours and hours and hours,” says Longmire, who’s visited 44 countries since she started using a wheelchair full-time. “The first thing I do when I want to go somewhere is look for an accessible tour company operating there, but they can be hard to find.”
If she can find an accessible travel company, Longmire will partner with the staff to make arrangements for wheelchair-friendly accommodations, and in-destination transportation and activities.
“While I can make arrangements for myself, sometimes it’s nice to give my money to a company that will take care of everything, and I just show up and have a good time,” explained Longmire.
Travelers with disabilities who take care of trip planning on their own, however, have their work cut out for them. One of the biggest areas of concern is lodging. The term “accessible” can have different meanings from hotel to hotel and country to country.
“When I started traveling, I called a hotel in Germany to ask if they were wheelchair accessible. They said they had an elevator, but that was the only thing — no accessible rooms or bathrooms, even though the website said the hotel was completely accessible,” says Lee.
Travelers have varying levels of independence and particular needs from a hotel room, and as such, merely seeing a room labeled “accessible” on a hotel’s website isn’t enough to guarantee it will meet their exact needs.
Individuals often need to call the hotel ahead of time to ask for exact specifications, such as the width of doorways, the height of beds, and whether there’s a roll-in shower. Even then, they may still need to make compromises.
McCall uses a Hoyer lift when she travels — a large sling lift that helps her move from the wheelchair to the bed.
“It slides under the bed, but a lot of hotel beds have platforms underneath which makes it really difficult. My assistant and I do this weird maneuver [to make it work], but it’s a big hassle, especially if the bed is too high,” she says.
All of these little inconveniences — from rooms missing accessible showers to beds that are too high — can often be overcome, but can also add up to an overall frustrating, exhausting experience. Travelers with disabilities say it’s worth the extra effort making calls upfront to minimize stress once they check in.
Another thing wheelchair users consider before taking a trip is on-the-ground transportation. The question of “How am I going to get from the airport to the hotel?” often requires careful planning weeks before arriving.
“Getting around the city is always a bit of a worry for me. I try to do as much research as I can and look up accessible travel companies in the area. But when you get there and you’re trying to call for an accessible taxi, you always wonder if it’s really going to be available when you need it and how fast it will get to you,” says Lee.
With so many obstacles to taking a trip, it’s natural to wonder: Why even bother traveling?
Obviously, seeing the world’s most famous sites (many of which are relatively accessible for wheelchair users) inspires many people to jump on a long-haul flight.
But for these travelers, the purpose of globe-trotting goes far beyond sightseeing — it allows them to connect with people from other cultures in a deeper way, often fostered by the wheelchair itself. Case in point: A group of college students approached Longmire on a recent visit to Suzhou, China, to rave about her chair through a translator.
“I have this really badass chair and they thought it was awesome. One girl told me I was her hero. We took a big group picture together and now I have five new friends from China on WeChat, the country’s version of WhatsApp,” she says.
“All of this positive interaction was amazing and so unexpected. It turned me into this object of fascination and admiration, as opposed to people looking at me as a disabled person who should be scorned and shamed,” Longmire adds.
And more than anything, successfully navigating the world in a wheelchair gives some travelers with disabilities a sense of achievement and independence they can’t get anywhere else.
“Travel has allowed me to learn more about myself,” says Maranon. “Even living with a disability, I can go out there and enjoy the world and take care of myself. It’s made me strong.”
Joni Sweet is a freelance writer who specializes in travel, health, and wellness. Her work has been published by National Geographic, Forbes, the Christian Science Monitor, Lonely Planet, Prevention, HealthyWay, Thrillist, and more. Keep up with her on Instagram and check out her portfolio.