Cure SMA Advocates for Better Wheelchair Storage for Air Travel
In a letter to a U.S. Department of Transportation Advisory Committee, Cure SMA called for better wheelchair handling and storage for people with spinal muscular atrophy (SMA) who travel by air.
The patient advocacy organization shared its perspective on the challenges of airplane travel — from booking tickets to wheelchair-to-seat transfers to exiting the plane — faced by SMA patients in its open letter to the Air Carrier Access Act (ACAA) Advisory Committee.
The main challenge for most patient passengers, however, is wheelchair storage, Cure SMA wrote.
“Wheelchairs are our legs,” the letter quoted one woman with SMA type 2 as saying in a plea to the airline industry. “It’s terrifying to have your only source of independence in jeopardy.”
Cure SMA also provided feedback on the recommendations made by the Subcommittee on Stowage of Assistive Devices for storing specialized equipment and assistive devices, as well as the airport and aircraft assistance usually provided.
People with SMA experience progressive muscle weakness and loss, impacting their ability to walk, eat, and engage in other activities essential for everyday life. Many individuals with SMA who use power wheelchairs for mobility face challenges when traveling by air, especially related to wheelchair stowage and passenger transport.
For example, a family from California with a boy with SMA has faced numerous problems traveling by air — especially with the storage of their son’s heavy power wheelchair.
Before checking the wheelchair at the airport, the family removes any parts that may break, such as the joystick, then covers it with layers of cellophane wrap for extra protection. Laminated instructions (with pictures) in English and Spanish, including how to move the chair and use the brakes, are secured to the chair with zip ties.
Despite these efforts, the wheelchair is often damaged.
“It’s difficult watching them from the plane window as they mishandle the chair, such as flipping it on its side and mashing it trying to get it through the small cargo hole,” the family said.
In a 2021 report, the Subcommittee on Stowage of Assistive Devices reported that damage to wheelchairs or scooters was a serious concern for most disabled passengers traveling by airline flights. The passenger with SMA type 2, a 27-year-old woman from Florida, said past damage to her wheelchair has limited her air travel.
“Wheelchairs are a lifeline. Wheelchairs are independence,” she said.
The subcommittee examined how and why mobility and assistive devices are damaged, finding problems with small cargo door openings and a lack of air travel standards to secure the devices.
“Cure SMA supports the recommendations related to establishing consistent labeling and securement standards and studying design improvements and innovations for storing power wheelchairs in the cargo compartment of narrow- and wide-bodied aircraft,” Cure SMA wrote in the letter.
How airline employees and contractors are trained for handling wheelchairs also was reviewed by the subcommittee, which found that most airlines and related companies provide initial in-person training and ongoing online training for cargo and cabin stowage, battery handling, and interacting with passengers.
The subcommittee, however, did not recommend any changes to these regulations training after reviewing the existing practices. That, according to Cure SMA, is a definite shortfall.
“Cure SMA believes more effective training is needed to improve the air travel experience for power wheelchair users, given the limited knowledge of and confusion around chair storage and handling,” they wrote.
“It is very scary to look out the window and watching them turn your chair completely on its side and put it up a conveyor belt,” said a 24-year-old woman from Virginia with SMA type 3. She said she says “a little prayer” while stowage staff takes her chair away.
Turning a power wheelchair on its side or pushing it through the cargo door “can result in damage to the device or to the aircraft,” the subcommittee noted. Cure SMA suggested that additional training, along with standard wheelchair and scooter handling checklists — as recommended by the Subcommittee — would help prevent power wheelchair damage.
“Cure SMA asks that the ACAA Advisory Committee reconsider its non-recommendation related to training of airline operations staff,” Cure SMA wrote.
Because wheelchairs are not allowed in the cabin, SMA passengers and others with walking difficulties must rely on staff assistance and boarding chairs (aisle chairs) to access the plane. Due to muscle weakness caused by SMA, many patients cannot sit independently in an aisle chair or aircraft seat without support. As a result, many people with SMA and other disorders are injured during the boarding process.
“The last time I suffered severe back pain and was extremely uncomfortable in the seats due to my spinal scoliosis [curvature of the spine],” recounted a 65-year-old with SMA who has avoided air travel for several years.
“Cure SMA supports the Subcommittee’s recommendation to study aisle chair design and the use of lift devices to improve the aisle transfer process for passengers who utilize wheelchairs,” the nonprofit wrote.
In comparison with air travel for passengers without disabilities, flying for people with SMA remains considerably different. Cure SMA was encouraged when the subcommittee voted unanimously to support the U.S. Access Board study, recommending the study be “completed in a prompt manner.” An SMA passenger should be able to access the plane and use their wheelchair as an aircraft seat, the organization said.
“Using my personal wheelchair with a seating system that accommodates me would make a world of difference,” a person with SMA said, as quoted in the letter.
Finally, Cure SMA urged the ACAA Advisory Committee to adopt the Airline Passengers with Disabilities Bill of Rights, which could improve air travel for those with SMA and other disabilities. The sections that were most relevant to the SMA community related to passenger assistance, aircraft that are accessible, traveling with power wheelchairs, and the use of ramps and lifts when level-entry boarding is not available.
Cure SMA recommended that the bill of rights clearly state that devices like wheelchairs should remain undamaged using language from the subcommittee report: “Wheelchairs, other mobility aid devices, and assistive devices must be returned to passengers in the same condition in which they were received.”