“Traveling with disabilities” is a 10-part series focusing on the experiences of travelers with disabilities. This is part of our mission to highlight underrepresented communities in travel. If you’d like to contribute to our reporting and share your experience as a source, you can fill out this quick form.
Cerebral palsy may have impaired Michael Grimmett’s mobility, but it hasn’t stopped him from seeing the world.
The British traveler has explored underground caves in China, been on cable cars in Romania and visited theme parks in the USA. Over his 41 years, he’s visited 14 countries spread across four continents, his wheelchair leaving more tracks across the Earth than most leave footprints.
“I like to push the boundaries,” Grimmett told USA TODAY. “Being a disabled person does bring its challenges … (but) I love to explore and to be free.”
It wasn’t until the pandemic emerged in 2020 that Grimmett had to pause his adventures, concerned that he could have an adverse reaction to the coronavirus. He has yet to plan another vacation.
“Hopefully, (I can go) this year, you never know,” he said. “I do understand what the end game is and to stay safe, but I’d like to go away.”
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Nearly two years into the pandemic, Grimmett is among a shrinking class of travelers who remain in isolation. Although omicron has caused COVID-19 cases to surge to record highs, airport checkpoints are nearing pre-pandemic levels, travel bans have largely dissolved and federal travel warnings are largely ignored.
But many people with disabilities have yet to return to airports, protecting themselves from a virus that could either feel like a rough bout of flu or take their lives.
“A lot of the disability community is generally not OK right now,” said Amy Gaeta, a Ph.D. student and disability rights activist who has nerve damage in one leg as well as invisible disabilities such as depression, anxiety, eating disorders, post-traumatic stress disorder and others. “I know people who are still sheltering in place, still quarantining. … (But many others aren’t) considering this idea that for a lot of us, the pandemic is still extremely real and lethal.”
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‘We can’t travel by the seat of our pants’
Despite making up roughly a quarter of the U.S. population, travelers with disabilities fear they’re being left behind as the world tries to establish a sense of normalcy.
It’s easy to pretend the pandemic is nearly over when your biggest concern is having to quarantine a few days with a headache and cough. But COVID-19 causes more than 1,900 deaths each day on average in the USA.
The disabled community overlaps with the immunocompromised population, roughly 7 million U.S. adults who are especially vulnerable to COVID-19, even when vaccinated.
A disability can take many forms. The Centers for Disease Control and Prevention said some of them can move people into the “high risk” category for COVID-19 because of factors such as congregate living settings or underlying medical conditions.
Debra Kerper, a travel agent with lupus who plans trips for people with physical or mental disabilities, said those risks have led to a lighter workload.
“(My clients) don’t want to take unnecessary risk,” said Kerper, a bilateral amputee. “A lot of people are thinking, ‘I’m going to wait until things are better.’”
Kerper said business is improving as people look ahead to the summer of 2022 and 2023, but travelers still have concerns.
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One of their biggest fears, according to Kerper, is testing positive for the coronavirus abroad. Being forced to extend a vacation to quarantine would be an inconvenience to anyone, but the ramifications could be much more severe for disabled travelers.
“They (worry that they) may not have enough medication or supplies to get them through,” Kerper said. “Unfortunately, we can’t travel by the seat of our pants.”
These concerns inflate an already extensive list: What if the airline damages my wheelchair beyond repair? What if the luggage with my medication gets lost? Will there be accessible bathrooms at my destination? Will my service dog be allowed?
“You’re always kind of putting yourself at risk (with travel),” said Lisette Torres-Gerald, a disabled scholar-activist of color whose work with the nonprofit TERC in part focuses on addressing disability, race and gender in math and science education. “Now it’s stressful because you don’t want to touch anyone or anything.”
Some said travel just isn’t worth the risk.
‘I just miss seeing people’
Melinda Utendorf of Sidney, Ohio, used to love planning vacations.
“Just for mental health reasons, I like to look forward to trips,” said Utendorf, who has fibromyalgia. “So I travel maybe four, five times a year because I love to look forward to things like that.”
That stopped when COVID-19 arrived. Utendorf hunkered down at home, leaving only for her job within a hospital system.
Even that became too dangerous after she was diagnosed with stage 4 bile duct cancer in September and started chemotherapy.
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“It is maddening. I don’t want to be in the house nonstop,” the 39-year-old said. “If I leave the house to go places, it’s extremely dangerous for me, being so immunocompromised, especially with cancer right now. My numbers aren’t always great with my white blood cells.”
To pass the time, Utendorf takes care of her animals (two cats, two dogs), chats with friends online, watches TV and works on puzzles. Her only respite from the lockdown is chemotherapy; vacations are not an option, she said.
“I miss staying in hotels and having room service with my friends, staying up late,” she said. “I don’t have close friends in this area; we’re all over the country. Everyone’s still isolated, and I just miss seeing people.”
Additional strains for travelers with disabilities during the pandemic
Andrea Moser-Sanders has flown once during the pandemic, and it was not a pleasant experience.
The 35-year-old Colorado Springs resident and her family took a trip to Florida in July 2020 to have her daughter, Giulianna, meet a specialist. The 3-year-old has autism, chronic obstructive pulmonary disease and a genetic disorder called PTEN hamartoma tumor syndrome that puts her at high risk for cancer and changes her facial features.
Moser-Sanders said her daughter’s conditions make mask wearing – and, consequently, air travel – more difficult. Masks are required in U.S. airports and on airplanes for people ages 2 and older through at least March 18.
“How does one keep something on a 2-year-old, regardless of what it is?” Moser-Sanders said. “It becomes very hard for people that are on the autism spectrum, for the sensory aspects of masks. … (And because of her facial features,) even buying her the smallest mask possible, it’s not comfortable for her.”
Giulianna obtained a mask exemption for the trip, but Sanders said that didn’t stop snide comments from other passengers at the airport directed at Giulianna’s bare face.
“People with disabilities are not always visible, especially with her. Her facial features are different but minimally different. … So a lot of people just assume,” Moser-Sanders said.
The mask mandate hinders communication for deaf travelers who rely on lip-reading, such as Marlene Valle. Valle documents her travel experiences in her blog, Deafinitely Wanderlust.
“With face masks on … I am only able to read by their eyebrows, eyes and body language,” Valle said in an email. “I needed to mentally prepare with the ideas of needing to interact with people who are wearing masks and stubbornly refuse to try to accommodate me – especially in situations where it can be serious, like the TSA or the customs at the airports.”
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‘A lot of us won’t be fine’
Dani Sanchez can tell you off the top of her head how long she’s been in isolation. Keeping track of the days passed (684 as of Wednesday), books read (223) or movies watched (3,209) helps pass the time.
The 35-year-old from Houston has a medley of diagnoses (secondary progressive multiple sclerosis, rheumatoid arthritis, fibromyalgia and epilepsy) and takes medications that leave her immune system vulnerable. She has remained home the past two years to steer clear of the virus, leaving only for essential trips such as doctor appointments.
Sanchez said isolation was easier when the rest of the world was in lockdown with her. Now that certain travel metrics are back at pre-pandemic levels, she feels that the disabled community is being left behind.
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“With the pandemic, it very quickly went from ‘We’re all in this together’ … (to where) I do see a lot of people say, ‘Well, I’m just going to live my life,’” she said. “It feels like they’re throwing the disabled people, the immunocompromised people, the elderly, children who cannot get vaccinated under the bus. Because a lot of us won’t be fine. If you get it, that could just be it.”
Grimmett, the avid traveler from the U.K., said he understands why more people are going out, but he hopes they’ll respect his choice to continue isolating.
“We do feel like we are kind of expendable in this pandemic,” he said.
He’s not alone. Leaders in the disabled community said many people have viewed its members as “disposable” during the pandemic – including federal health officials.
More than 100 disability organizations and allies signed a letter sent to CDC Director Rochelle Walensky on Jan. 13 after her appearance on “Good Morning America,” where she discussed a study of more than a million vaccinated people that found of the 0.003% of people who died of COVID-19, more than 75% of them had at least four comorbidities.
During the interview, Walensky said these deaths were among “people who were unwell to begin with” and called it “encouraging news.”
“We are extremely concerned by your comments,” the letter to Walensky reads. “People with disabilities and pre-existing conditions have been disproportionately killed by COVID-19. This is particularly true for those who live in congregate settings. Each of these deaths is a devastating loss to families, friends and to our broader communities.”
Walensky met with a group of representatives from disability organizations and allies and apologized.
‘As if people with pre-existing conditions … don’t deserve the same opportunity at life’
Mackenzie Doyle of Lincoln, Nebraska, has a hard time seeing people downplay the pandemic. The 22-year-old has mast cell activation syndrome, a condition that regularly triggers anaphylaxis. For Doyle, those allergic reactions can range from minor itching to difficulty breathing.
“People are saying a lot of, ‘Oh, it’s only the vulnerable who are dying from it. It’s only the old people, only the people with preexisting conditions.’ … As if people with preexisting conditions and people who are older and things like that don’t deserve the same opportunity at life that everybody else does,” she said.
Doyle and others hope that the pandemic has been a learning moment for the travel industry. As long-haul COVID symptoms affect millions of Americans, the disabled community’s growing numbers could pave the way for change.
“I do hope that as more and more people are having long-term effects from COVID and more and more people are having to use mobility aids and things like that … they’ll see just how little accessibility there is,” Doyle said. “Hopefully, they can also start advocating more, and more people will be understanding of these issues and hopefully try to put an end to it.”
Follow USA TODAY reporter Bailey Schulz on Twitter: @bailey_schulz.