Kevin Schaefer hadn’t been in an airport since he was 4 years old, so he had been looking forward to flying from his home in Cary, North Carolina, to Anaheim, California, in June for the 2019 Cure SMA Conference. As it turned out, his experience didn’t go as expected. Airport workers dropped his wheelchair three times during the trip, causing serious damage.
Schaefer, who is forums director for BioNews Services (publisher of this website) and a columnist for SMA News Today, has spinal muscular atrophy (SMA) type 2; he uses a customized chair that weighs nearly 400 pounds, typical for such specialized equipment.
“I saw it from the window. Because they don’t know how to properly handle the chairs, they dropped mine once on the way there and twice on the way back,” he said. “By the time I got home, it was barely drivable.”
What happened to Schaefer is not unusual, however. Because wheelchairs must be stowed in the cargo areas of commercial planes — they aren’t permitted in cabins — the possibility of damage is one of many issues regularly faced by wheelchair users.
In a collaborative effort to bring about change, nonprofit RARE Courage is launching a survey about assistive devices and passenger air travel geared toward those with neuromuscular diseases, including multiple sclerosis (MS). The survey is available here.
Coordinating with RARE Courage on the project is another nonprofit, All Wheels Up, which is working with airline carriers and aircraft manufacturers to make airplanes accessible for the 4 million wheelchair users in the United States — and millions more around the world — who depend on wheelchairs for mobility and safe seating.
Produced largely by the RARE Courage travel accommodations subcommittee, the survey will include about 25 questions regarding airlines, travel frequency, required travel accommodations, and assistive equipment use, storage, damage and repair.
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