Travelers with disabilities, chronic illness share tips for navigating the world

I could feel my world growing smaller when I was diagnosed with Crohn's disease, a chronic illness that affects the digestive tract. In May 2020, we were in the midst of a global shutdown — and even before that, symptoms of my then-uncontrolled, unnamed illness had led me to stay home more often than not.

One in four American adults live with a disability, and 60% have at least one chronic illness. As travel continues to ramp up, more people like me will have questions about how to navigate it with their circumstances.

Through online communities, travelers with disabilities or chronic illnesses share tips and support for making the experience more accessible and alleviate fears that others might have when planning trips.

I talked to some well-traveled experts on how to make travel more accessible and connect with local communities.

Be your own travel agent

In the podcast "What's Wrong With You?", New Zealand journalist Olivia Shivas and her friends discuss their experience navigating the world as wheelchair users. In their episode on disabilities and travel, the podcast team flies across New Zealand to interview a disability advocate and encounter accessibility barriers to travel firsthand.

"One of the reasons we made the podcast is I love getting advice and helping other disabled people know what's possible," said Shivas, who was born with muscular dystrophy.

Common issues that arise for wheelchair users while traveling include plane aisles being too narrow for their wheelchairs; hotels and attractions that don't meet accessibility needs; and wheelchairs being broken or lost by airlines. The latter is an expensive and life-altering occurrence for people traveling with wheelchairs — more than 15,000 wheelchairs have been damaged or lost by U.S. airlines since 2018 as of June 2021. While public spaces in the United States have to comply with the Americans With Disabilities Act, Shivas says this is more limited in countries without similarly rigorous accessibility policies.

Even the entrance to an Airbnb or hotel being a few inches off the ground can make it inaccessible for a wheelchair, Shivas said.

"But just because the world is badly designed doesn't mean we don't want to see more of it," said Rebecca Dubber, Shivas's co-host and a Paralympian, on the podcast episode.

To meet these challenges, Shivas thoroughly researches and plans each leg of her journey. She reads blogs and reviews by other disabled people, checks out the exterior of buildings on Google Maps (with a keen eye for staircases), and makes sure to request accessible accommodations.

"​​I am basically my own travel agent," she said.

Unfortunately, this doesn't always ensure a problem-free journey. On the podcast episode, the team discovered that the "accessible" lookout at a castle they visited was only reachable by steep staircases.

"You kind of have to learn to be creative, adapt and find different solutions," she said.

Reaching out to locals

In 2014, Marlene Valle traveled to a new country without her family for the first time. Valle, who is deaf, received many warnings against traveling alone; they told her it was best to have a hearing person accompany her, she remembers.

"I really thought it would be tough for me to travel because how would I navigate, communicate [with people who speak] verbally, how would I catch announcements on certain flights?" she said in American Sign Language.

But travel quickly became her passion. After the first trip to South Korea in 2014, she started her blog "Deafinitely Wanderlust" and a YouTube account of the same name in 2015 to chronicle her journeys and the stories of people she met in the deaf community across the globe. Valle said she saw no representation of deaf people in the travel industry and wanted to change that.

In 2018, Valle and her partner, who is also deaf, embarked on a yearlong journey across Asia.

She considers the biggest hurdles to travel accessibility for deaf people to be a lack of awareness by airlines, tour groups and other travel organizations on how to make their services equitable.

The best way Valle has found to make sure she doesn't miss flight updates or announcements is to download the airline's app and turn on alerts. She also makes sure to confirm the app's information with the departure boards at the airport and check in with gate agents so they will let her know when it's her turn to board.

When planning trips, Valle often reaches out to local deaf community members, who can tell her what to expect in terms of accessibility.

Prepare for the worst, but don't let it stop you

Since Knowles-Griffiths was diagnosed with Crohn's disease at 13, she said, it has been "a defining part" of her identity.

"I just had a lifelong passion for travel and tried to never let Crohn's stop me," she said.

But about a decade ago, she experienced a severe flare-up of symptoms that made her question whether she would be able to travel again. She struggled to find any online resources specific to traveling with Crohn's.

One of the biggest accessibility hurdles she has encountered overseas is bathroom access.

Nearly having her medication confiscated by airport security taught Knowles-Griffiths to always carry a note from her doctor detailing her diagnosis and medical needs.

Knowles-Griffiths said half of what she packs is often food and medication since her "safe" foods can sometimes be hard to find.

She sees every person traveling with a disability as already far outside their comfort zone.

"The only way you can really fulfill your travel desires is by putting it front and forward, and knowing you're going to have to tackle it the whole way, but it's going to be so worth it," Knowles-Griffiths said.