Marco Giustiniani and Roberta Galise cycling in Indonesia.
When they traveled to Indonesia in 2019, Marco Giustiniani and his girlfriend each packed a light backpack.
They also brought along a suitcase full of life-saving drugs.
Giustiniani, 30, has cystic fibrosis, a genetic condition that causes a build-up of sticky mucus in his lungs, digestive system and other organs. Without regular treatment —including antibiotics, bronchodilators and steroid medicine — the condition can lead to life-threatening infections or reduced lung function.
When Giustiniani travels, he has to cross international borders with a suite of medications, which he uses as frequently as every few hours. He also has to make sure his Italian health insurance will cover the cost of any medical treatment he may need abroad. And he has to deal with his doctors, who often persuade patients with cystic fibrosis to delay or reconsider trips in order to avoid complications and unnecessary risks.
“The fear of travel is something that lots of people with cystic fibrosis seem to share,” Giustiniani said.
But the pandemic has meant almost everyone is grappling with similar restrictions. “For us, it’s always been quite difficult,” he said. “Now, with Covid, traveling became difficult for everyone.”
According to the World Tourism Organization (UNWTO), the pandemic has caused a 22 percent drop in international tourism during the first quarter of 2020, and a decline of more than 70 percent throughout the whole of 2020.
In other words, global tourism has returned to the levels of 30 years ago, with 1 billion fewer arrivals and a loss of $1.1 trillion in international inbound visitors’ expenditure.
Where industry analysts might see a financial bust, disability advocates see a silver lining: That massive disruption could finally open the doors to international travel they’ve been knocking on for years.
As a growing number of consumers say they intend to reduce the amount they fly for fun long after the pandemic, airline companies may finally be compelled to make their services more accessible to a broader range of potential customers.
That includes the more than 15 percent of the world’s population that lives with some form of disability, defined as a long-term physical, mental, intellectual or sensory impairment.
Between 2013 and 2015, more than 26 million American adults with disabilities traveled for business or pleasure — and millions more would likely join them, if airports, airlines, hotels and urban centers eliminated the barriers in their way. When you consider that 87 percent of people with disabilities travel with at least one other person, it’s a huge potential market.
“It really is a sensible business move to cater for this market in the future,” said Dale Reardon, who has been blind since the age of 17 and founded Travel For All, a platform where people can find information about accommodations and facilities when planning their travels.
But there’s more work to be done. “A lot of businesses think accessibility is only about ramps and accessible bathrooms,” Reardon said. “There’s a lot more to it.”
Giustiniani and Galise in Fuerteventura.
Many able-bodied people may not notice the accessibility baked into the architecture of American cities.
“The advent of disability rights has changed every environment we live in,” said Bess Williamson, an associate professor of art history, theory, and criticism at the School of the Art Institute of Chicago. “And it’s a fundamental change which hasn’t been driven by architects, but by the people.”
In her book, Accessible America: A History of Disability and Design, Williamson traces the history of design responses to disability rights from 1945 to the present, laying out how activists have expanded the notion of inclusion in everyday environments.
“Disabled people have always made it work for themselves,” Williamson said. After World War II, as the survival rate of long-term illnesses and injuries expanded, she explained, so too did the number of people living with disabilities. “That’s when we started seeing creative ways people found to make travel accessible.”
In the war’s aftermath, for example, people altered their cars to make them work for wheelchair users, and the first “guide books to accessibility” — put together by amateur writers, activists and locals — started appearing in Chicago and other major U.S. cities.
But progress was uneven. In her book Out of the Horror of War activism, historian Audra Jennings describes a man who “shipped himself like a package” on a train during this era, because he found that option easier than figuring out accessibility features.
Activists also began pushing for legislation to make travel accessible on a larger scale. The first big success came with the Rehabilitation Act of 1973, which addressed discrimination against people with disabilities for the first time. The federal law aimed to end isolation by removing barriers — physical and otherwise — through architectural improvements, as well as protection against employment discrimination.
Throughout the 1970s, the Disabilities Rights Movement enjoyed many more wins. But a growing number of Americans were also fighting against the rights of disabled people. “Suddenly, for the first time, there’s this feeling that the demand for accessibility might be too much for everyone else, almost like a burden,” Williamson said.
This pushback included resistance to demands for more accessible public transportation. “Most people agree that there’s the need for some level of access, but the question is: how far?” Williamson said. “Travel isn’t often considered a necessity; it’s perceived as a luxury.”
This was especially true of certain modes of travel, like airplanes. For decades, airlines had been allowed to refuse service to people with disabilities. But the 1986 Air Carrier Access Act mandated any flight arriving to or departing from the United States offer a range of assistance, including free storage of personal equipment like wheelchairs and help boarding and deplaning. It also opened the firsts doors to service animals.
In 1990, after decades of lobbying and protests, President George H.W. Bush signed the Americans with Disabilities Act (ADA), which prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and public spaces.
Despite this decades-long streak of successes, access to travel remains far from equal.
Giustiniani and Galise in Tenerife.
Some of the most significant challenges for people with disabilities start at airport security.
“Carrying the life-saving drugs that Marco needs can be tricky,” said Roberta Galise, Giustiniani’s girlfriend. The checklist for ensuring they can travel begins with making sure the drugs are legal at their final destination. Some elements, however, are out of Giustiniani and Gaslise’s control. “They can always decide to seize a part of the drugs to run tests and verify they are legit. They are allowed to do that, legally, but those are drugs that Marco needs to survive,” she said.
Ed Rex, a deaf travel blogger, said security checks at the airport can also be tough for people who are deaf or hearing impaired. These areas are usually crowded and noisy, making it difficult to understand security officials’ instructions even with the help of hearing aids, resulting in very stressful — and potentially dangerous — situations.
The difficulties continue into the cabin, advocates say. For example, levels of oxygen inside the aircraft are an issue for people with cystic fibrosis, who may need oxygen tanks to help them breathe normally. At present, only a few airlines provide these for free on board, so people have to bring their own — even though not all oxygen containers are allowed on planes and each airline has different policies concerning their use onboard.
Once they’ve arrived, people with disabilities may discover marketing materials for their destination were misleading, according to research from the University of Tennessee. Researchers found that many tourism organizations believe meeting minimum ADA standards is “good enough.”
Reardon has experienced these shortcomings firsthand. “My wife and I did a lot of international travel, back when we still could,” he said. Last year, they stayed at an Airbnb in Paris whose description had inaccurate information about the property’s accessibility features. “We had a lot of problems with it,” he said. That’s what led him to create Travel For All.
In a recent survey led by Travel for All, 67 percent of respondents said they are unable to easily find the information they need when planning travels, and 70 percent said they would travel more if they could be confident a property was suitable for them.
Once the trip is over, even review systems can be unreliable. “It’s not unusual for poor reviews to get deleted, and people sometimes don’t even post bad reviews because they are worried about what the owner might say,” Reardon said. But this information is essential for informed consumer decisions. “Everyone has unique needs — it’s a matter of giving people the information they need to make their own decisions.”
Accessible travel options not only are difficult to find, they are often more expensive. Traveling with a disability can be up to four times costlier because the necessary accommodations — a specific seat in an aircraft or a hotel room with a refrigerator for temperature-sensitive medicine — are often only available as a luxury service.
But in the U.S., many have begun to argue that travel itself is not a luxury but a basic tenet of American liberty. Despite this right to travel, the many barriers between point A and point B have kept some would-be travelers from straying far from home.
Still, some hope these accommodations can transition from being an exception to ordinary travel, to the norm. “What if the airlines were really planning for half of the people on their plane to be disabled?” said Williamson, the historian. “That could actually change the way they operate, constructing a more humane way to travel.”
Giustiniani and Galise in their van.
The Covid-19 crisis, among other things, has forced us all to reassess the way we travel. In doing so, we’ve learned what kind of travel matters, and what might not in the future.
Remote work, for example, has proven some portion of business travel unnecessary, whether it’s a cross-town commute or a flight around the world. Aside from the emissions reductions, Williamson said, a transition away from business travel would make working life much more accessible for professionals with disabilities. “We’ve learned that being there in-person is not the only way to communicate,” she said.
The pandemic has also forced employers — about 50 percent, by one estimate — to virtually host many events that would normally require attendees to fly, drive or otherwise travel. Online events not only use less energy and reduce waste, they can also help challenge our notion of “sustainability.”
By definition, sustainability has environmental, economic, and social aspects, according to Stefanie Benjamin, assistant professor in retail, hospital, and tourism management at the University of Tennessee.
For a particular process to be sustainable, it should be economically viable, not cause irreversible change to the environment, and benefit the whole of society. This third pillar — social equity — too often gets left out of the discussion, Benjamin said.
“Understanding that disability covers more than just being on a wheelchair or having a cane is one way that the travel industry can become more sustainable,” said Ethan Bottone, an assistant professor of geography at Northwest Missouri State University,
Covid-19, and our recovery from it, offers the chance to reconsider and radically alter our norms around social equity — from healthcare and vaccines to access to fundamental rights such as travel and the outdoors.
“Trying to make nature more accessible is something that needs to be done if we want a more just and equitable society,” Bottone said. A challenge like improving or creating accessible restrooms, entrances, parking lots and water fountains in the U.S.’s more than 400 national parks is immense, but worthwhile. It also offers an almost guaranteed financial return. Lack of access for visitors with disabilities leads to $3.6 billion in lost annual revenue to parks, partners, concessioners, and gateway communities, a National Park Service Accessibility Task Force concluded in 2019.
The same kinds of post-Covid-19 improvements for travel seem just as worth the investment. Giustianiani, for example, said he’d like to see aseptic areas inside the aircraft for people with respiratory problems like his. Other post-Covid changes to air travel could also include “touchless cabins,” inflight janitors and mandatory sanitation for luggage, according to a report published by aviation marketing consultancy SimpliFlying.
“Traveling by plane is literally impossible for me right now,” Giustiniani said. But if we take advantage of this moment to transform what travel looks like, these changes would do more than just make air travel possible for people like Giustiniani; it could make traveling normal, even easy.
Photos courtesy of Marco Giustiniani and Roberta Galise. Follow them on Instagram @SkinnyFrogTrips.
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