The Not-So-Friendly Skies: Flying When You Have a Rare Disease

August 4, 2023

Updated to include a tweet from RARE Advocate, Neena Nizar, about damage to her wheelchair after flight (October 16, 2023)

Updated to include an article about Beyoncé stepping up to get a fan in a wheelchair to her concert (September 22, 2023).

Updated to include an article featuring RARE Advocate, Neena Nizar (September 18, 2023)

Air Travel Troubles

Daniel DeFabio. Director of Community Engagement at Global Genes, is also co-founder of The Disorder Channel, which streams rare disease films to your TV set. He produces short films and TV series on The Disorder Channel  including this one call “Pain Points”.

The skies can be not so friendly when you have a rare disease. Despite ADA requirements, it’s too hard to manage for many of us.
Guest: Mandy Korst lives with Cystic Fibrosis.

Air travel with a wheelchair

Caitlyn Short shares her experience when her wheelchair was damaged during air travel.

Caitlyn Short was frustrated to find that her wheelchair was damaged the first time she flew with it.

The 25-year-old, who works for the Indiana State Department of Health, traveled to Washington, D.C., from Indianapolis for work and said the experience of flying with her mobility device was a hassle from beginning to end.

On her return flight, after landing in Indianapolis, she noticed one of the arm pads had broken off.

Read more about Caitlyn’s experience

And we’re not just complaining, you can do something about this one!

Contact Your Legislators

Update Added October 2023

Updates Added September 2023

1 family, 3 damaged wheelchairs while flying: Travel needs ‘complete overhaul’ they say (USA Today, September 18, 2023)

USA Today recently featured Neena Nizar, RARE disease advocate and contributor to this year’s RARE Health Equity Forum and RARE Drug Development Symposium, highlighting the difficulties of air travel with wheelchairs.

From USA Today: According to the Department of Transportation, airlines “mishandle” on average about 1.5% of the mobility equipment they transport. In 2022, that translated to 11,389 incidents reported by U.S. airlines, up from 7,239 in 2021.

Read about Neena’s experience

Beyoncé Flew Out Disabled Fan to Her Concert After Airline Didn’t Accommodate Wheelchair (Apple News, September 22, 2023)

It shouldn’t require Queen Bey level effort to travel by plane in a wheelchair. Jon Hetherington has waited over two decades to see Beyoncé live, so when he was told that an airplane couldn’t accommodate his wheelchair and he missed the concert, the BeyHive made it happen. But Beyoncé and her team went above and beyond to provide transportation to another concert. Jon was able to meet the Queen herself, as well as her mother, Tina. But for Jon, it isn’t just about seeing Beyoncé in concert.

“We have not built our society or this country in a way that is fully inclusive,” Jon told The New York Times. “Day to day, we’re kind of ignored and invisible,” he said in reference to people living with disabilities. “I’m sitting here as someone who has been disabled my entire life, saying it’s not about the one airline,” Hetherington told Insider. “This is a systemic issue.”

Read more about Jon’s experience

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