When the Road Beckons, Adam Malone Is Ready to Roll
Adam Malone has a passion for traveling. The 21-year-old native of Ridgeland, MS, loves exploring new places and learning about different cultures.
But pursuing his passion presents some challenges that most of us don’t even have to think about—like getting on a plane or finding a seat in a theater. Adam has Duchenne muscular dystrophy and navigates life in his wheelchair. It gives him a unique perspective, he says—one that he’s putting to good use in his career.
“We have a family friend who works for a travel agency, and I started thinking that becoming a travel agent myself would allow me to combine what I love with helping other people like me be able to get out and see the world,” he says.
The friend referred him to a travel agency called Adventures by Jamie.
The agency is owned by a woman who uses a wheelchair. They serve typical and special needs clients, including people with Down syndrome, food allergies, autism and more.
Says Adam, “I called Jamie and explained what I wanted to do, and she said, ‘Sure, come on!’ That was in March, and I’ve been working on building my clientele ever since.”
Ironically, Adam may have been bitten by the travel bug thanks to his twice-a-year trips to Cincinnati Children’s, which started when he was diagnosed with Duchenne at age 2.
“Cincinnati is one of my favorite destinations,” he says. “There’s a lot to see and do there.”
His other favorite place to visit is Orlando. He gives Walt Disney World high marks for accessibility.
“At Disney, you can roll your own chair onto the rides, whereas some places require you to transfer to one of their chairs,” he explains.
It may seem like a minor detail, but these are the types of barriers that can make or break a travel experience.
“Some hotels will put grab bars in the shower and by the toilet and call themselves accessible,” Adam says. “But there’s much more to it than that.”
For example, many big hotel chains have platform beds in the rooms. There is no space underneath to slide a Hoyer lift that helps clients get in and out of bed.
“What this means for me is that I have to reserve a suite with a sleeper sofa, which generally costs more,” says Adam. “Sleeper sofas are notoriously uncomfortable, so I bring an air mattress with me to put on top of the mattress that’s there. But at least there’s room underneath to put the Hoyer lift.”
Another issue is having enough space in the room to turn a wheelchair around.
“Usually there’s enough room to maneuver in a manual wheelchair, but power wheelchairs are bigger,” he says.
Historic sites are particularly challenging because old buildings aren’t easily modified. The Biltmore Estate in Asheville, NC, for example, has an elevator that takes visitors halfway up, so the upper floors aren’t accessible to anyone who can’t climb steps. The Hermitage, home of Andrew Jackson in Nashville, TN, has no elevator at all, so tourists with mobility issues are handed a picture book of the second floor instead.
Theaters pose another problem. Seats for patrons in wheelchairs are often located in the front and command a premium price, or they are all the way in the back, where it can be difficult to see and hear.
Adam loves to visit Walt Disney World because they are so good at making their attractions and facilities accessible.
Adam visiting Gaylord National Resort in Maryland, near Washington DC.
Perhaps the biggest barrier is flying on a plane.
“There isn’t room on a plane for a power wheelchair, so you have to use a manual one to board the plane,” says Adam. “That leaves the handling of your power wheelchair to the airline, and if they don’t know what they’re doing, they can break it. Power wheelchairs cost upward of $20,000, so that’s a considerable investment. In the U.S., airlines are required by law to pay for repairs, but it can put a crimp in your vacation plans. The rules are different when traveling internationally, so it’s important to know what recourse you have if your wheelchair is damaged. I’m not saying air travel is impossible—many people with disabilities do it. But there are concerns.”
With all these obstacles to consider, many people might just opt to stay home. But that’s where Adam can do his greatest good.
“I love planning trips, doing research, googling places to stay and fun activities,” he says. “I can help clients find hospital beds, Hoyer lifts, shower chairs, oxygen—whatever they need to have their dream vacation—whether they have a disability or not.”
Breaking down barriers—for himself and for others—is the most satisfying part of Adam’s job.
“Not having the independence that a lot of people my age have is a bit difficult,” he says. “It’s also a common misperception that because I’m in a wheelchair, I have mental deficits. People think they are being kind, but it feels condescending to be talked to in a high-pitched, sing-song voice.”
None of this stops Adam from pursuing his goals, though.
“I love expanding my own horizons and passing along what I’ve learned to my clients so they can expand theirs,” he says. “It takes a bit more research and planning, but it is so worth it in the end.”
Adam's love for traveling may have been helped along by his frequent visits to Cincinnati Children's over the course of his childhood. Here he visits the William J. Clinton Presidential Library in Arkansas.
Unpacking the Benefits of Great Care
When Adam Malone says Cincinnati is one of his favorite travel destinations, he’s talking about more than the tourist attractions. Cincinnati Children’s has been a home away from home of sorts for him and his family since 2004, when Adam was first diagnosed with Duchenne muscular dystrophy.
“The staff at Cincinnati Children’s are great,” he says. “We’ve become really good friends with many of them, including Herbert from the lab who actually texts us and calls us on every holiday. My pulmonologist, Dr. Sawnani makes himself readily available if we have any issues. All my doctors do this, which is very reassuring.”
Adam especially likes that his specialists talk to each other.
“It’s not like the cardiologist says one thing and the pulmonologist says something entirely different,” he explains. “They all work together to develop a plan of care.”
In 2017, Adam broke his hip, and the doctors in Mississippi wanted to give him an epidural instead of general anesthesia during surgery. Adam’s family called Sawnani for his opinion. Fortunately, the pulmonologist in Mississippi had trained under Sawnani, so the two connected.
“Dr. Sawnani assured him that I would do fine with general anesthesia as long as I was on my bi-pap machine,” says Adam.
Ultimately, the communication, coordination and collaboration among caregivers contributes to the main reason Adam appreciates Cincinnati Children’s.
“The life expectancy in Mississippi for someone with Duchenne is very low,” he says. “But when you go to experts who specialize in my condition, the life expectancy triples and quadruples. I am extremely grateful for my care team and the opportunity they’ve given me to live my best life.”