Individuals with SMA Describe New Travel Hiccups and Wheelchair Damage in Their Air Travels to Cure SMA National Conference

A record-number of individuals with spinal muscular atrophy (SMA), a neuromuscular disease, travelled to Orlando to attend Cure SMA’s national conference from June 29 to July 2. Several adults with SMA and families of children with SMA reported damage to their wheelchairs and other air travel hiccups that impacted their conference experience.

  • “This is my first time traveling all alone. It was stressful and scary. At no time did any of the airline staff speak to me as a human. I was just another piece of cargo that had to be dealt with,” Shonna, Los Angeles, CA
  • “The airline crew returned to tell me that they had to turn my wheelchair on its side to clear the cargo hold. When I landed in Orlando, the entire bracket that holds my joystick on my wheelchair was completely snapped off and so I’m basically without a properly working joystick in a state where I don’t live in,” Amber, Chicago, IL
  • “When we were instructing the crew on how to handle the chair and where the brakes were, they were dismissive and insisted they knew what they were doing. They decided to unwrap the chair to reengage the gear, which ultimately led to the chair being damaged.” Tilly, Stanford, CA
  • “When my wheelchair arrived the back of the chair was bent forward and snapped. The airline was not prompt with repairs, so we found someone ourselves who was able to temporally fix it.” Noelle, Morristown, NJ
  • “During the flight, my power wheelchair was severely damaged.  A repair person was sent to our resort to repair the damage, but it was so severe that the chair was not able to be repaired (tilt and recline function were inoperable). I rely on my wheelchair for all mobility so having the tilt and recline function inoperable had a huge negative impact on my family’s vacation,” Dana, Columbus, OH
  • “I just got home from the conference and my chair got bent and twisted. My headrest came off as did my footrest. Although we were able to fix it, it scares me to have to imagine my life without it while strollers are tagged to be handled with care. What’s the difference between the thing the able-bodied child needs and what I need daily?” Kellie, Vernon, NJ

These latest travel woes are on top of the more than 165 SMA community air travel experiences featured in Cure SMA’s “Good, (but mostly) Bad, and Ugly of Air Travel for People with Spinal Muscular Atrophy” report. The Cure SMA report also included short- and long-term recommendations to Congress for improving the air travel experience for individuals with SMA, including air passengers who travel with a power wheelchair or other mobility device.

Legislation is being considered in the U.S. House and U.S. Senate (and supported by Cure SMA) that would help improve air travel for individuals with disabilities by, among other things, boosting training and equipment for airline and airport staff who support passengers with disabilities, collecting more data related to the nature and resolution of wheelchair damage and other disability air travel complaints, and requiring the U.S. Department of Transportation to conduct feasibility studies on allowing wheelchairs in the cabin of the plane.

“These newest air travel problems by members of the SMA community are further proof that changes are needed to improve air travel for children and adults with SMA and their families,” said Maynard Friesz, Vice President of Policy and Advocacy for Cure SMA. “We are asking Congress to quickly pass aviation legislation that includes these needed improvements for passengers with SMA and other disabilities, particularly those who travel in their power wheelchair or scooter.”

Accessible air travel and other travel considerations for people with SMA were the focus of a workshop featured during the Cure SMA annual conference. The adults with SMA who led the workshop all travel regularly. During the session, they shared their travel tips for reserving accessible hotel rooms, traveling with personal care attendants, and protecting their wheelchairs during air travel. Throughout the conference, attendees had opportunities to advocate with their Members of Congress in support of accessible air travel. More than 1,100 separate messages from the SMA community were sent to Congress in support of air travel changes for people with disabilities. To learn more about Cure SMA’s advocacy efforts on behalf of the SMA community, including its work related to accessible transportation, go to:

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