When I was diagnosed with Crohn’s disease, a chronic condition that affects the digestive tract, I felt my world getting smaller and smaller. We were in the midst of a global lockdown in May 2020, and even before that, the symptoms of a then uncontrollable and unnamed illness had kept me mostly confined to my home.
Having grown up dreaming of the day I would be able to explore the world independently, I felt that independence rapidly slip away as doctors explained the many new medications and lifestyle changes that my diagnosis required.
But last year, as the world began to reopen, I found myself drawn to the same budget travel websites where I’d previously booked trips, and somehow I clicked “buy.”
One in four American adults has a disability and 60 percent have at least one chronic illness, so as people travel more and more, more people, like me, will have questions about how to navigate traveling in their situation.
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Through the online community, travellers with disabilities and chronic illnesses can share tips and support to make their travel experience more accessible, reducing the anxiety others may have when planning a trip.
“When I hear from people who have booked tickets and are telling me to take the chance… it’s always exciting,” says Jamie Knowles-Griffiths, who blogs about travelling with Crohn’s disease.
Just getting to a place where I could travel again was a journey in itself. I spent months overcoming a lifelong fear of needles and learning how to self-inject my medication every two weeks so that injection dates and clinic visits wouldn’t prevent me from traveling in the future.
People with disabilities and illnesses have to deal with additional worries and procedures, and for those who are immunocompromised, it becomes even more complicated during a pandemic. My main concerns are figuring out how to keep my medications refrigerated throughout my stay in the hospital, dealing with a possible recurrence of symptoms, and keeping my immune-compromised body healthy.
We spoke to seasoned travel experts about how to make travel more accessible and connect with local communities.
In the podcast What’s Wrong With You?, New Zealand journalist Olivia Sivas and her friends talk about their experiences traveling the world as wheelchair users. In episodes about disability and travel, the podcast team travels around New Zealand to interview disability advocates and experience first-hand the barriers to travel accessibility.
Shivas is an experienced traveller and has picked up skills along the way to ensure your trip goes as smoothly as possible.
“One of the reasons I created the podcast is because I love getting advice and letting other people with disabilities know what’s possible,” says Sivas, who was born with muscular dystrophy.
Common issues wheelchair users face while traveling include airplane aisles that are too narrow for wheelchairs, hotels or attractions not meeting accessibility needs, and airlines damaging or losing wheelchairs, the latter of which can be costly and life-changing for people traveling in wheelchairs. As of June 2021, more than 15,000 wheelchairs have been damaged or lost by U.S. airlines since 2018. Public spaces in the U.S. are required to comply with the Americans with Disabilities Act, but Sivas says this is more limited in countries without similarly strict accessibility policies.
Airlines have lost or damaged more than 15,000 wheelchairs since late 2018.
Sivas said that if the entrance to an Airbnb or hotel is inches off the ground, it may be inaccessible for a wheelchair.
“But just because the world is badly designed doesn’t mean we don’t want to see more of it,” Shivas’ co-host and Paralympian Rebecca Dabbar said in an episode of the podcast.
To address these challenges, Sivas thoroughly researches and plans each leg of her trip: She reads blogs and reviews from other people with disabilities, checks building exteriors on Google Maps (paying special attention to stairs), and makes sure to request accessible accommodations.
“I’m basically my own travel agent,” she said.
Unfortunately, this doesn’t always guarantee a trouble-free journey: in one episode of the podcast, the team discovered that the “accessible” observation deck of the castle they visited could only be reached by a steep staircase.
Sivas has had experiences abroad where her wheelchair has been damaged on an airplane or on the streets while touring a new city, but she was resourceful and even managed to fix a flat tyre in Helsinki with help from a local bike shop.
“We have to learn to be creative, adapt and find different solutions,” she said.
In 2014, Marlene Valle traveled to a new country for the first time, away from her family. As a deaf person, she heard many warnings about traveling alone. She remembers being told it was best to have someone who could hear accompany her.
“I found traveling really difficult. How would I get around and communicate? [with people who speak] “How can you hear the announcements on a particular flight verbally?” she said in American Sign Language.
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But travel quickly became her passion. After her first trip to South Korea in 2014, she started a blog, “Deafinitely Wanderlust,” and a YouTube account of the same name in 2015 to document her travels and share stories of people she met in deaf communities around the world. Valle said she noticed a lack of representation for deaf people in the travel industry and wanted to change that.
In 2018, Valle and her partner, who is also deaf, set out on a year-long journey across Asia.
She believes the biggest obstacle to travel accessibility for the deaf is a lack of awareness on the part of airlines, tour groups and other travel organisations to provide services equitably.
“Sometimes they’ll communicate with you like a deer in headlights,” she said.
In a 2018 blog post, Valle shared her experience of being yelled at by an airline employee in Singapore when she asked the employee to write down what she and her companions were saying. Another traveler intervened, and a different airline employee eventually responded in writing.
“If you feel dehumanized and know you shouldn’t be treated that way, it’s okay to speak up for yourself,” Valle wrote in her blog.
Valle has found that the best way to ensure she doesn’t miss any flight updates or announcements is to download the airline’s app and turn on alerts, check the app’s info at the airport departures board, and check in with the gate agent to be notified when it’s her turn to board.
When planning a trip, Valle often reaches out to members of the local deaf community to ask what to expect in terms of accessibility, and through this, he has learned sign languages from around the world.
Prepare for the worst, but don’t let it stop you
Knowles-Griffiths said that since she was diagnosed with Crohn’s disease at age 13, it had become a “definitive part” of her identity.
“I’ve had a passion for travel all my life and I’ve tried not to let Crohn’s disease stop me from doing so,” she said.
But about 10 years ago, my symptoms got so bad I started to question whether I’d ever be able to travel again, and I struggled to find online resources for traveling with Crohn’s disease.
“When I was bedridden and looking for inspiration, I didn’t find many positive resources out there,” Ms Knowles-Griffiths said.
Through her blog, Crohnie Travels, Knowles-Griffiths has sought to break down stigma by sharing her honest experiences of travelling and living with Crohn’s disease.
One of the biggest accessibility hurdles she’s encountered abroad is access to bathrooms, and while she usually carries a wallet-sized card with ADA information, it’s not enough.
After having her medication confiscated by airport security, Knowles-Griffiths learned to always carry a doctor’s note detailing her diagnosis and medical needs, including the exact medications she’s taking.
Knowles-Griffiths says half of her luggage is food and medication, as “safe” foods can be hard to find – she’s even pre-shipped protein bars and dairy alternatives to her destination – and she prefers to find accommodation that allows her to prepare her own meals and has private space to rest if her symptoms worsen.
“When people see someone with an invisible illness, they often see them as weak, unadventurous, unable to adapt to the culture, or a little too judgemental or critical,” she says.
But she believes anyone travelling with a disability is already far out of their comfort zone.
“The only way to truly satisfy that desire to travel is to make it a priority and know you have to follow through, but it’s so worth it,” Knowles-Griffiths said.