DALLAS, Texas—In 2011, Texas resident Matt Plummer, who has type 3 spinal muscular atrophy (SMA), boarded an American Airlines flight bound for Charlotte, North Carolina, and a series of graduate school interviews there. He checked his wheelchair, as airline regulations require—his mind focused on all the opportunities that awaited him at the upcoming conference.
But after the flight landed and taxied to the gate, Plummer remained seated, and in shock.
“I looked out the window onto my broken wheelchair, all in pieces,” he recalled. “The armrests were snapped in half. A controller from my power wheelchair was sitting in the seat, and all the cables completely pulled out of the back of the chair, left for me to piece together once I landed. It honestly looked like someone had dropped the chair from a high distance.”
Plummer filed a complaint with American, which eventually paid him in full for a replacement wheelchair. But his trip was basically destroyed.
“My friend had to push me in my 350-pound wheelchair around the conference to all my grad school interviews, where I had completely lost all my confidence in the process,” he said. “I have never received an explanation for why that happened.”
Plummer is today a creative director and brand manager at the University of Texas Permian Basin in Odessa. He’s also a board member of the Muscular Dystrophy Association (MDA), which is fighting to make airline travel more accessible to people with disabilities.
“Not much has changed since then,” he told Rare Disease Advisor on the sidelines of the MDA’s recent 2023 Clinical & Scientific Conference here. “Legislation, of course, is the first step in solving this issue and preventing these life‑altering instances of the most valuable equipment people like me could possibly have being destroyed on a whim—and having to wait months and months for repairs and replacements.”
Groups Seek to Amend 1986 Air Carriers Access Act
In fact, the MDA has taken the lead in pressing for change at the highest levels of the Federal Aviation Administration (FAA).
“This year, the most important legislation on accessible air travel is being considered,” said Paul Melmeyer, the MDA’s vice president of public policy and advocacy. “This is the best opportunity we have to make air travel more accessible to people with neuromuscular diseases.”
The MDA is coordinating its lobbying efforts with other advocacy groups such as All Wheels Up, a Frisco, Texas-based charity founded in 2011 by Michele Erwin, who tried to arrange a trip to Disney World in Florida with her son Greyson, who has SMA.
Their goal is to amend the 1986 Air Carriers Access Act, which “makes it illegal for airlines to discriminate against passengers because of their disability,” according to the federal Department of Transportation. It was passed 4 years before the much broader Americans with Disabilities Act (ADA).
Melmeyer said air travel “remains one of the most inaccessible experiences” for those with diseases such as SMA, Duchenne muscular dystrophy and amyotrophic lateral sclerosis (ALS).
“Narrow aisles, damaged wheelchairs, inaccessible lavatories and individuals being dropped when doing seat transfers—all of this makes air travel incredibly undignified and oftentimes dangerous for those with neuromuscular disabilities,” he said.
“Consequently, we’re trying to change all of that this year by enacting into legislation via this year’s FAA reauthorization, accessible air travel reforms that will make the experience of air travel much safer for the neuromuscular disability community.” Congress needs to reauthorize the FAA for planes to continue to fly on October 1, 2023, he noted.
He said the MDA has bipartisan backing for this effort, and that he’s “incredibly grateful” for the support of Sen. Tammy Duckworth (D-Illinois), Sen. Maria Cantwell (D-Washington), and Sen. Tammy Baldwin (D-Wisconsin). On the House side, supporters include Rep. Rich Larsen (D-Washington), Rep. Garret Graves (R-Louisiana) and Rep. Dina Titus (D-Nevada).
Disability Activist: ‘I Think It’s a Revenue Issue’
Current air travel limitations are particularly hard on people who participate in clinical trials which require them to fly thousands of miles from home, Melmeyer said.
“We know that for certain rare neuromuscular diseases, clinical trials might only take place at certain specific sites across the United States,” he said. “If they don’t have their customized power wheelchair with them in order to not only get to the airport, but then once off the plane, get from the airport to the clinical trial, then they may have to drop out of the trial entirely.”
Christopher Rosa, PhD, president and CEO of the New York-based Viscardi Center, knows exactly what air travel feels like for those who use wheelchairs. Rosa, who has limb-girdle muscular dystrophy, is vice chair of the MDA’s board of directors and former vice chancellor for student affairs at the City University of New York.
“The primary consideration the airline industry cites has to do with safety standards. Unlike train and over‑the‑road travel, securing somebody’s power wheelchair in an aircraft where all the elements need to be crash‑tested and safety‑rated poses a significant challenge,” he said.
“Quite frankly, I think it’s a revenue issue,” Dr. Rosa added. “As we all know, on air travel, the seats have gotten smaller and smaller. The notion that you would lose two or three of those seats to accommodate one wheelchair user and his or her wheelchair might seem prohibitive for an airline industry where the profit margin is paramount.”
Donald S. Wood, PhD, the MDA’s president and CEO, was more blunt.
“Transportation on buses is fine. Transportation on trains is fine, and in private vehicles,” he said. “But the airlines have actually shrunk access points, basically discouraging these people from flying, and when someone with a disability gets on board, who’s going to pick him up and put him into an airplane seat? These folks break bones. They do not have training.”
Dr. Wood added: “The airlines could intentionally have an area for people in wheelchairs or offer 2 seats so the person doesn’t have to be lifted out. But there’s not a single airline in America that’s even started tackling this.”
MDA Plans ‘Legislative Day of Action’ on May 10
Plummer said air travel without his wheelchair is so discomforting that he abstains from eating and drinking the day before a trip so he won’t have to use the airplane lavatory in flight.
“There are no options for me to be able to fit comfortably into a restroom, or even to be taken to the restroom, other than to be strapped into an aisle chair and pushed down the plane to a room that the door probably wouldn’t close with me in it,” he said. “It’s a demeaning experience to be manhandled out of your wheelchair, placed into an aisle chair, and lifted by people who mean to do their best, but are oftentimes untrained in transfers and patient care.”
Dr. Rosa, citing FAA statistics, said the airline industry damages more than 2000 wheelchairs per month.
“When you’re an air traveler with a disability, you very much feel as though you check your civil rights curbside with your luggage—that the moment that you enter into an airport, you feel as though your rights and opportunities are no longer equal to other air travelers,” he said.
On May 10, 2023, the MDA plans a “Legislative Day of Action” on Capitol Hill, where the organization will advocate on a range of issues including accessible air travel as well as increased funding for the National Institutes of Health to study rare diseases.
“We’re working with like-minded disability rights organizations to amend the Air Carriers Access Act to give it more teeth, and also to establish the right of personal action for people whose lives are disrupted and damaged and whose durable medical equipment is damaged, so that they would be able to potentially sue an air carrier for damages,” the disability activist said. “Right now, that’s precluded under the Air Carriers Access Act.”
Asked to name any airline that’s been especially eager to accommodate flyers such as himself, Dr. Rosa shook his head.
“I think the industry as a whole has paid much more attention to the experiences of travelers with disabilities,” he said, “but no one entity has a record that they ought to be particularly proud of.”