I have Duchenne muscular dystrophy, a rare, progressive neuromuscular disorder that causes the weakening of muscle cells, which makes it difficult to walk and nearly impossible to do most physical activity. As a result, I’ve had plenty of limitations traveling.
Traveling with a disability is not easy, but it should be enjoyed by everyone. This includes Americans who have trouble walking or are unable to walk, who make up 13.7 percent of the population, according to a 2019 report by the Centers for Disease Control and Prevention.
I’ve managed to see 13 countries, 23 states and Puerto Rico, largely thanks to my dad. He has literally carried me through situations any able-bodied person would have difficulty with, whether it was down a waterfall in Argentina or up to the Great Wall of China. We started when I was 6 in Russia and haven’t stopped. I just turned 23.
Traveling is “a basic human right for inclusion and diversity,” said Brett Heising, founder of Brettapproved, a website that uses user-generated content to rate locations based on accessibility.
Still, traveling with a physical disability is a challenge. I’ve ridden a small, irritable donkey with no saddle up the cliffs of the Greek island of Santorini, persuaded Argentina’s government not to disassemble my mobility device, and navigated rough cobblestone in Italy and slippery rock stairs at Iguazu Falls, in Argentina. An elevator and low-grade ramp would have helped immensely. Unfortunately, you don’t always get what you need while traveling.
“For someone who is perfectly capable and normal, if travel [can be] enough of a pain point and heartache for them — imagine if you have different concerns?” says Aradhana Khowala, a steering-committee member for the World Tourism Forum Lucerne, which addresses the industry’s trends, future challenges and sustainability.
Getting out of my comfort zone and experiencing different places through travel has shaped my worldview and the way I interact with others. I hope to show those in similar situations that we are capable of seeing the globe. In interviews with travel experts and disabled globe-trotters, I’ve landed on a few tips that might make your next trip less stressful.
Do your research
“Give as much info and do as much research ahead of time so you don’t put yourself in a bad situation,” says Eric Lipp, executive director for the Open Doors Organization, a nonprofit that helps businesses serve the disabled community.
Planning ahead can reduce the unforeseen problems you may face. Ask for pictures, be clear about what you need and triple-check accommodations.
There are plenty of crowdsourced websites, like Brettapproved, that offer ratings of places based on the experiences of those with disabilities, caretakers, family members and friends.
My power chair is my most prized possession, because it acts as my arms and legs, and if it were to be damaged while traveling, it would ruin the trip. According to Department of Transportation data taken in December 2019, about 1.3 percent of wheelchairs and scooters are mishandled. With preparation, you can avoid the worst.
Find out what kind of services are available in the places you’ll go — or the places you’ll use to get there. In the United States, if you call the Transportation Security Administration’s TSA Cares hotline before a flight, which launched in 2011, the agency will give assistance from the curb to the plane.
Most airlines have dealt with people with disabilities before, but it’s important to take precautions. Measure the dimensions of your chair, if you have one, so they can get the right plane for you and paste easy-to-read handling instructions on the mobility devices.
Communicate your needs, and don’t be afraid to ask for help
It’s frightening to ask random people for help, especially from a lower point of view. When I traveled back and forth between cities during a summer internship, I had to ask people to help me put my luggage on the conveyor belt. They didn’t bite, and it made my life a lot easier.
“Ninety-nine percent of the time, when I ask for help, help is provided,” Heising says.
People won’t know how to help you if they don’t know anything about your situation. That’s why it’s important to be transparent and give as much information about your condition as possible.
I have a rare muscle disease most people haven’t heard of. Does that mean I need to explain the molecular pathways of my cells? No. But saying, “How many feet would I have to walk?” “I can’t lift my scooter on my own” or “Can you help me out of the car? You need to grab me here,” makes a world of difference.
Be flexible and adaptable
In 2012, my family wanted to go diving while on vacation in St. Thomas, in the U.S. Virgin Islands. Divers typically put their gear on near the front of the boat, walk a few feet to the back and slip into the water from there. With my limited muscle strength, it wasn’t possible to walk that far with the weight of an oxygen tank, weighted belt and vest. Instead, my parents and I put on all of my equipment while I sat on the edge of the boat. All I had to do was shimmy a few inches and drop straight in.
There was also the issue of swimming on my own. I have enough strength to get in a few kicks with flippers on, but not enough to sustain the whole dive. We asked the guide if he could grab my dive vest and tow me between reefs.
That persistence of exploring ways around a barrier is natural to Adedoyin Adepitan, a former Paralympic athlete-turned-travel-TV-host for the BBC who is always on the road. He uses a wheelchair because of polio complications and approaches everything with the same attitude:
“We’ll go, and if we come across an obstacle we can’t deal with, then we’ll find a way of overcoming it,” says Adepitan, 46. “There are always ways to make what you want to do, work.”
Yes, there’s a lot of stress when it comes to traveling with a disability. But don’t let that subtract from a good time. Focus on the bright spots, even if things didn’t go how you wanted. Celebrate the things that work out better than you could have imagined.
We owe it to ourselves, and the people around us, to not allow our surroundings to stifle our adventurous spirit.
“This world is for all of us, and we shouldn’t be restricted by whatever impairment that we have,” Adepitan says.