Today, on Rare Disease Day, U.S. Transportation Secretary Pete Buttigieg and White House officials announced actions the U.S. Department of Transportation (DOT) plans to take to improve air safety for individuals who use wheelchairs, including passengers with spinal muscular atrophy (SMA). Cure SMA attended the February 29th White House announcement and plans to submit public comments in support of the rule’s goal of protecting the safety, rights, and dignity of air travelers who use wheelchairs.
The proposed rule would help to address challenges and implement recommendations identified by the SMA community in Cure SMA’s recent air travel report. Under DOT’s regulatory proposal, airlines would be required to provide hands-on training to their employees and contractors who assist with aircraft seat transfers and power wheelchair storage. In addition, the DOT rule would clarify airlines’ responsibilities around assisting passengers with disabilities, improve the resolutions process for when a wheelchair is damaged, and protect the rights and dignity of air travelers with disabilities.
Individuals with SMA who use wheelchairs regularly experience wheelchair damage and injuries during aircraft seats transfers. One adult with SMA featured in Cure SMA’s air travel report described how his wheelchair was tipped on its side to fit in the plane. “When we landed, they brought my wheelchair to the gate only to discover that it was non-functional. The chair had no power, and the joystick had an error code on it. The chair would not move at all. The repairs to my chair were over $3000,” he said.
Another individual with SMA shared how she received huge bruises on her back due to an unsafe aircraft seat transfer. “I had to scream at the transfer folks because they were jamming the armrest into my back. It was so bad the fellow flyers were apologizing and asking if I was ok. I ended up with a huge bruise on my back.” A young adult with SMA described how he was blamed for his flight’s departure delay. “The pilot announced over the intercom that the flight was delayed due to having to load my wheelchair into the cargo bay. So not only was I embarrassed and blamed in front of a plane full of strangers, but I was made to feel bad for being disabled on top of mishandling my chair and the fallout related to that misstep.”
Cure SMA has worked throughout 2023 and 2024 to educate Congress and DOT about these and other air travel challenges faced by individuals with SMA and their families. In February 2023, Cure SMA released its Good, but mostly, Bad and Ugly of Air Travel for People with SMA to chronicle the challenges and recommend solutions. Throughout the rest of 2023, including at Cure SMA’s Hill Day, SMA community members advocated directly with their Members of Congress for legislation to make air travel safer and more accessible. In December 2023, Secretary Buttigieg spoke to SMA community members and supporters about the Administration’s work in support of accessible air travel, including this DOT regulation. Today (February 29), Cure SMA is moderating a panel discussion in New York to highlight the air travel challenges and advocacy actions SMA community member can take to advance accessible air travel legislation in Congress.
For more information about Cure SMA’s advocacy efforts around accessible air travel, go to https://www.curesma.org/cure-sma-advocacy/ where you’ll find direct links to the air travel report, advocacy action alert, and congressional testimony.