Association Presses for Safe and Dignified Air Travel for People Living with ALS


Last week, the ALS Association told the Secretary of the Department of Transportation (DOT) about the horrible experiences of ALS advocates when flying and gave detailed feedback on the Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Proposed Rule.

This is part of our effort to make air travel safe and accessible for people living with ALS. Many people with ALS do not fly because they worry about air travel. This excludes them from the benefits of flying, which is disability discrimination.

People living with ALS often encounter serious issues when traveling by air, including personal injury, wheelchair damage, and discriminatory treatment. The inability to access air travel may also prevent them from participating in clinical trials, or receiving promising new treatments and the critical care they need.

“The ALS Association agrees with the Department’s Proposed Rule that aims to safeguard and respect disabled airline passengers who need their wheelchairs for their mobility and want the airlines to manage their equipment with care,” said Rich Brennan, ALS Association Vice President of Federal Affairs.

Included with the comments were 115 powerful stories from the lives of people who have ALS to show how important it is for airlines to address these problems as soon as possible.

Delays and Rough Handling:

Molly Veydovec’s mother was given less than a year to live, so her family made it a priority for her to see them before she was no longer able to travel. Airline employees did their best, but her mother was “treated like baggage,” she said. Her mother waited over half an hour after everyone else had left the plane for assistance. The airline crew member who moved her was rough and she felt “pushed and prodded” during transport. “In a situation where people with ALS have already lost so much dignity, air travel is one place they could be made to feel human,” Veydovec said.

Inaccessible Restrooms:

Paul Klotz had difficulty securing seats next to a restroom on all his flights to Italy. His scooter and portable wheelchair were in the baggage compartment and walkers are not ideal for navigating narrow airplane aisles. “The location of the restroom from my assigned seat made it difficult to use the bathroom,” he said. “Assigning an aisle seat next to a bathroom would make it more accessible for people with disabilities,” Klotz said, “and grab bars would be an added safety measure for disabled travelers to access the bathroom.”

Damage to Mobility Lifelines:

John Roselle’s wife was diagnosed with ALS in 2021 and got her power wheelchair in May of 2022. She took her first trip to Philadelphia the following month. Her chair was significantly mishandled on both legs of the trip and required an immediate replacement, which was not available. Roselle took photos of the ground crew loading his wife’s 400-pound power chair onto the ramp to the baggage compartment. They put it on its side, which damaged one of the arms and the communication links. “It was obvious they had no idea how to handle the chair or get it on the plane,” Roselle said. He and his wife decided after that experience never to fly again and instead rely on their mobility van for long drives.

These are just a few of the stories and first-hand experiences that emphasize the importance of:

  • Prioritizing timely assistance for passengers with ALS.
  • Ensuring accessibility features, such as nearby restroom seats and grab bars.
  • Proper training for airline staff on handling mobility equipment and understanding ALS.
  • Recognizing and accommodating invisible disabilities to provide appropriate support.
  • Ensuring accountability and responsiveness from airport staff to address immediate needs and concerns.

Our feedback covers the need for safety and dignity, training of airline staff to assist people with ALS, and enforcement of the Air Carrier Access Act (ACAA) to deal with the significant barriers that individuals with disabilities face using wheelchairs when flying by air.

We are committed to raising awareness and addressing the problems of air travel and will work with the DOT and the Department of Homeland Security's Transportation Safety Administration to help incorporate these initiatives. We are also working to better inform people living with ALS and their families about available resources, such as TSA Cares and the passenger assistance programs.

Click HERE to read our full remarks.

To read more “flightmare” stories from the ALS community that we submitted with our comments, click HERE.