Three travelers with disabilities or chronic illnesses tell how they navigate the world

As the aisles of the plane are too narrow for her wheelchair, Olivia Shivas borrows one to board the plane. (Olivia Shivas/For The Washington Post)

I felt my world shrink when I was diagnosed with Crohn’s disease, a chronic disease that affects the digestive tract. In May 2020, we were in the midst of a global shutdown – and even before that, the symptoms of my then uncontrolled and nameless illness had led me to stay home more often than not.

After growing up dreaming of the day when I would have the independence to explore the world, I felt that independence was quickly fading as my doctors explained the many new medications and lifestyle changes my diagnosis would bring. .

But as the world began to reopen last year, I found myself drawn to the same budget travel websites I would book trips with in the past. And somehow I found myself clicking “buy”.

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

Through online communities, travelers with disabilities or chronic conditions share advice and support to make the experience more accessible and alleviate fears others may have when planning trips.

“When I hear from people booking that ticket, give it a shot…it’s always exciting,” said Jamie Knowles-Griffiths, who blogs about traveling with Crohn’s disease.

Getting to a place to travel again was a journey in itself. I spent months overcoming a lifelong fear of needles to learn how to inject myself with medication every two weeks so that any future journeys I wanted to pursue would not be hampered by infusion dates and clinic visits.

Disabled or ill people face an extra layer of worry and logistics – and it’s even more complicated during a pandemic for those who are immunocompromised. For me, the main concerns are finding a way to keep my medications in the fridge throughout my stay, dealing with a possible flare-up of my symptoms, and keeping my immune-compromised system healthy.

I spoke to experts who have traveled extensively about how to make travel more accessible and connect with local communities.

Be your own travel agent

In the “What’s Wrong With You?” podcast, New Zealand journalist Olivia Shivas and her friends talk about their experiences navigating the world as wheelchair users. In their episode about disabilities and travel, the podcast team flies over New Zealand to interview a disability advocate and encounter accessibility barriers to travel first-hand.

Shivas travels a lot and has learned skills along the way to make sure the trips go as smoothly as possible.

“One of the reasons we created the podcast is because I love getting advice and helping other people with disabilities know what’s possible,” said Shivas, who was born with muscular dystrophy.

Common issues that arise for wheelchair users when traveling include airplane aisles that are too narrow for their wheelchairs; hotels and attractions that do not meet accessibility needs; and wheelchairs broken or lost by airlines. The latter is a costly and life-altering event for people traveling in wheelchairs – more than 15,000 wheelchairs have been damaged or lost by US airlines since 2018 in June 2021. While public spaces in the US must Complying with the Americans With Disabilities Act, Shivas says this is more limited in countries without such stringent accessibility policies.

Even having an Airbnb or hotel entrance just 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,” Shivas co-host and Paralympian Rebecca Dubber said in the podcast episode.

To meet these challenges, Shivas thoroughly researches and plans every step of his journey. She reads blogs and reviews from other people with disabilities, checks building exteriors on Google Maps (with a keen eye for stairs), and makes sure to request accessible accommodations.

“I’m basically my own travel agency,” she said.

Unfortunately, this does not always guarantee a problem-free journey. In the podcast episode, the team discovered that the “accessible” gazebo of a castle they visited was only accessible by steep stairs.

Shivas has also experienced wheelchair damage abroad, both by airlines and on the streets while visiting a new city. However, she was once able to think quickly – and the help of a nearby bike shop – to fix a flat tire in Helsinki.

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

Thanks to the Americans With Disabilities Act, Olivia Shivas said, Hawaii's beaches have wheelchair-accessible mats to reach the shore.

Thanks to the Americans With Disabilities Act, Olivia Shivas said, Hawaii’s beaches have wheelchair-accessible mats to reach the shore. (Olivia Shivas/For The Washington Post)

Reach the locals

In 2014, Marlene Valle traveled to a new country without her family for the first time. Valle, who is deaf, has heard many warnings against traveling alone; they told her it was better if a hearing person came with her, she recalls.

“I really thought it would be difficult for me to travel because how could I navigate, communicate [with people who speak] verbally, how could I pick up announcements on certain flights?” she said in American Sign Language.

But travel quickly became his passion. After the first trip to South Korea in 2014, she launched her blog “Deafinitely Wanderlust” and a YouTube account of the same name in 2015 to tell about her travels and the stories of people she met in the deaf community across the country. world. Valle said she doesn’t see any representation of Deaf people in the travel industry and wants to change that.

In 2018, Valle and her partner, also deaf, embarked on a year-long journey through Asia.

She considers the biggest barriers to accessible travel for Deaf people to be the lack of awareness among airlines, tour groups and other travel organizations on how to make their services fair.

“Sometimes they’ll be like a deer in the headlights communicating with you,” she said.

In a 2018 blog post, Valle shared an experience where an airline employee in Singapore yelled at him and his fellow traveler when they asked the employee to write this. they said. Another traveler intervened and another airline employee eventually responded in writing.

“If you feel dehumanized and know you shouldn’t be treated this way, you can speak for yourself,” Valle wrote on her blog.

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

When planning trips, Valle often contacts members of the local deaf community, who can tell her what to expect in terms of accessibility. Thanks to this, she picked up signs from sign languages ​​around the world.

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

Ever since Knowles-Griffiths was diagnosed with Crohn’s disease at age 13, she said, it has been “a defining part” of her identity.

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

But around a decade ago she experienced a severe flare-up of symptoms that left her wondering if she could travel again. She struggled to find online resources specific to traveling with Crohn’s disease.

“I didn’t find many positive resources there when I was bedridden and looking for inspiration,” Knowles-Griffiths said.

Through her “Crohnie Travels” blog, Knowles-Griffiths has worked to break the stigma with honest accounts of her experiences traveling and living with Crohn’s disease.

Access to restrooms is one of the biggest barriers to accessibility she has encountered while abroad. Although she usually carries a wallet-sized card with information from the Americans With Disabilities Act, that’s never a guarantee.

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, including the exact medications she is taking.

Knowles-Griffiths said half of what she packs is often food and medicine, as her “safe” foods can sometimes be hard to come by. She even shipped protein bars and dairy alternatives to her destination. She also prefers finding accommodation where she can cook her own food or have a private space to rest if she experiences a flare-up of symptoms.

“People can often be a little judgmental and critical when they see someone who has an invisible disease and perceive them as weak, not as adventurous or not as able to adapt to the culture,” he said. she declared.

However, she considers that every person traveling with a disability is already far from their comfort zone.

“The only way to truly fulfill your travel desires is to put it on the back burner and know you’re going to have to tackle it along the way, but it’s definitely going to be worth it,” Knowles-Griffiths said.

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