Snaking security lines. Cramped middle seats. Lost luggage. Unexpected delays. For many people, air travel can be a nuisance. For those who need to take a wheelchair on a plane, it’s a nightmare.

Just ask Cory Lee, the accessible travel blogger behind the award-winning website Curb Free with Cory Lee. Cory was diagnosed with spinal muscular atrophy at age two and began using a power wheelchair at age four. “My wheelchair means total independence,” he says. “It’s my legs, in a sense, but it’s so much more than that. My entire well-being is dependent upon the wheelchair.”

Cory has traveled to 37 countries and all seven continents. His custom-made wheelchair serves him well on his journeys. Airplanes, conversely, do not.

Due to a total lack of space for mobility devices, Cory must surrender his wheelchair every time he boards a plane. “Without it, I can’t really do anything,” he notes. Giving up his wheelchair means giving up his freedom.

After a flight on June 28, Cory received his wheelchair with the joystick and armrest dragging on the ground — broken. It took nine days to repair the damage. The airline paid roughly $500 to repair the damage and Cory received a $500 future flight voucher and a total flight refund. In all, this incident cost the airline over $1,400. Cory’s wheelchair didn’t work properly for nine days.

Disasters like these are all too common. An airline broke Gabrielle deFiebre’s wheelchair on a plane this past May. In a Tik Tok video shared by model and disability rights activist Bri Scalesse, deFiebre pleads with a TSA agent, saying, “It was made for me,” while choking back tears. By the end of July, deFibre shared on Instagram that she’d yet to receive a replacement. Over a month later, the same airline also broke Scalesse’s wheelchair. Scalesse again used Tik Tok to share her dismay, saying, “I don’t know how I’m going to live my life.”

In a report filed by the Secretary of Transportation to the United States Congress in 2018, it states that passengers filed 36,930 disability-related complaints with airlines flying in, out and within the US. The US government finally began collecting data on airline-related wheelchair mismanagement the same year, and since then, over 15,000 wheelchairs or scooters have been lost or damaged. According to a 2020 report from the Department of Transportation, airlines damage roughly 29 disabled travelers’ wheelchairs daily.

It’s been 31 years since the Americans with Disabilities Act (ADA) became the law of the land — forcing buses, subways, and other modes of public transportation to accommodate wheelchairs and their users. But airlines are not included in the ADA; they follow the Air Carrier Access Act of 1986, which doesn’t adequately address the needs of passengers with disabilities.

It’s now 2021. We’ve landed a rover on Mars. Billionaires can fly safely to the edge of space. Isn’t accessible air travel long past due?

“It just doesn’t make any sense to me — why there’s funding for space travel, but there can’t be funding to make an accessible spot on an airplane,” says Cory.

What flying is like for a wheelchair user

For Cory Lee, the horrors of flying begin anywhere from 48 to 72 hours before he arrives at the airport. This is when he starts cutting back his food and beverage intake to avoid using airplane lavatories, which don’t meet accessibility standards for wheelchair users.

“I’ve actually never used the bathroom on a flight,” he admits. “I flew from Atlanta to Johannesburg, which was 17 hours nonstop, and I didn’t eat anything for about three days or drink for about 24 hours before the flight.”

“I always try to tell myself it’s going to be worth it once I get to the destination. I know it’ll be a lot of fun if I can just get through that flight.”

When Cory arrives at the airport — usually starved and dehydrated — he must contend with another indignity — an invasive security pat-down.

A TSA agent-in-training administered Cory’s most recent security check. “It was horrible,” he says. “The TSA agent was padding too hard, squeezing my arms, and trying to lift my arms and legs. I can’t do all that.”

Once he gets to the gate, he’s forced to part with his mobility device and transferred to an aisle chair: “a thin, manual wheelchair that can roll down the aisle of the plane,” Cory explains. Many in the disability community refer to this as the “Hannibal Lecter chair” — an apt comparison, considering the user’s appendages must be strapped down while getting wheeled to their seat.

Next, Cory gets transferred into his plane seat. “The transferring process is always the part of air traveling that makes me the most nervous,” he says, “because, in the past, I’ve been dropped by the crew.”

Cory always sits on a cushion to avoid getting pressure sores from a chair not designed for his body. “But sitting on a cushion means my feet often can’t touch the ground, and my legs will go numb.”

“If I’m in first class and get a lie-flat seat, that’s a bit better, but it’s such a debacle even getting into the seat,” he says. Cory requires a moveable armrest to transfer safely from the aisle chair into his plane seat — an accommodation often lacking in first-class cabins. “For that reason, I usually fly in economy or comfort plus, because they more frequently have movable armrests.”

During the actual flight, Cory worries about his wheelchair. He prepares for the worst by bubble wrapping the joystick, taking any removable pieces on board in a carry-on, and putting signs on the wheelchair detailing how baggage handlers should treat it. “But frequently, the signs and bubble wrap will get ripped off,” he says.

A Delta Airlines representative informed Matador Network that bubble wrap can sometimes make wheelchairs too large to travel in a plane’s cargo hold, which is likely the cause for removal. But messaging concerning proper packing can be inconsistent and confusing from one flight to the next. “The airline personnel usually encourage [bubble wrap],” says Cory.
“Once I arrive at the destination, I’m anxiously waiting to see my wheelchair and make sure that it’s going to work and in good condition.” A quarter of the time, something is damaged. “Without my wheelchair, I can’t travel,” Cory reiterates. “I can’t even do my job.”

For Cory, the solution to these problems is clear: Existing airplanes must be retrofitted to accommodate a wheelchair space, and new airplanes must incorporate accessibility into their design. “There’s no reason why I should not be able to get on an airplane and stay in my wheelchair,” he says.

Fighting for an accessible future

“How is it that the most technology-advanced machines — airplanes — are not equipped to handle better accessibility?”

This is the question Michelle Erwin started asking herself ten years ago after navigating a difficult flight with her four-year-old son, who also has spinal muscular atrophy and uses a power wheelchair.

“I started doing research and learned that there was no organization out there advocating for a wheelchair spot on airplanes, no less funding the research to make it happen,” says Erwin.

That’s when Michele decided to take up the task herself. In 2011, she founded All Wheels Up (AWU) — a wheelchair advocacy group focusing on accessible air travel. “We are the only not-for-profit organization in the world funding and conducting the research needed for a wheelchair spot on airplanes,” she says.

After years of working directly with Congress and the Federal Aviation Administration, change is finally on the horizon. In March, US Senator Tammy Baldwin (D-WI) and Representative Jim Langevin (D-RI) introduced the Air Carriers Access Amendment Act, which would require both new and existing airplanes to meet the needs of people with disabilities.

But Erwin doesn’t expect change to happen overnight. She says donations from the disability community are responsible for most of the research necessary to get wheelchairs on airplanes. “There hasn’t been any sponsorship or government funding — nothing to come our way and help push this along.”

On top of financial struggles, Erwin remains realistic about the logistical and regulatory quagmires that come with new laws. The ADA, for example, gave buses and other modes of ground transportation 14 years to accommodate wheelchair users after it became law. Erwin believes airlines should get similar parameters. “As long as your demands aren’t irrational, everyone’s open to the conversation,” she says.

Meanwhile, the team at AWU is doing their best to make current air travel experiences safer for disabled fliers. In January, they launched the Fly Safe Today initiative, a program that addresses the lack of airplane evacuation plans for people with disabilities. The program provides disabled travelers with a CARES Special Needs harness and an ADAPTS sling. The harness helps position people with disabilities in airplane seats; the sling is an evacuation device for emergencies and safe transfers.

To apply for the program, travelers should email contact@allwheelsup.org and include their name, email, home address, phone number, and age, and explain why the equipment will benefit their flight experience.

AWU has recommended to Congress that an ADAPT sling be added to all evacuation kits on airplanes. Until that comes to pass, Erwin says the company will provide one to “any wheelchair user who wants to advocate for their own safety while flying.” She hopes to give out at least one hundred slings a year. AWU is still searching for sponsors and grants to make Fly Safe Today an annual program; a virtual 5k will take place in August to raise money for the organization.

The results of inaccessibility

Michele’s son is now 14; he hasn’t flown on an airplane in seven years. “It’s honestly too hard,” she says. As a result, he missed a Make-A-Wish trip to Japan, a family wedding, and countless other chances for travel. According to a survey conducted by AWU, 80 percent of wheelchair users don’t travel because the risks — both physical and wheelchair-related — are too high.

People from the disability community aren’t the only ones missing out. By failing to recognize the economic impact of travelers like Cory Lee and families like the Erwins, airlines don’t reap the rewards of their business. In 2018 and 2019, 27 million travelers with disabilities took a total of 81 million trips and spent $58.7 billion, which doesn’t account for any companions who traveled with them. “We’re such a huge portion of the travel population,” says Cory, “and I wish airlines could see that and do something about it.”

Although accessible wheelchair spots aren’t likely to materialize for years, Cory says airlines can still act immediately to become more accessible. “Train the ground crew and their employees on why wheelchairs are important and how to load a chair without damaging it.”

A power wheelchair like Cory’s can cost anywhere between $10,000 to $78,000. “That’s more than most people’s cars,” notes Michele. When an airline damages or loses a wheelchair, it’s their job to replace it and appropriately compensate the injured parties — an endeavor that costs companies millions of dollars every year.

Airlines cannot treat wheelchairs like luggage — they must treat them as extensions of the user’s body. Learning this simple truth might be one small step for the airline industry but one giant leap for the disability community. Accessible air travel is prepared for takeoff; it’s time for airlines to get on board.