Advice: Flying while disabled is a nightmare. It shouldn't be this way

I live in Boston and want to visit my daughter in Los Angeles. Easy, right? Book a flight, visit daughter, fly home. If only. I use an electric wheelchair that costs about the same as a small SUV. I'm terrified it could be damaged by an airline. My chair, a Quantum Edge, is essential for my movements. To having a life.

The Quantum and I met two years ago and have been inseparable ever since. I didn't see it coming, our relationship. It never occurred to me that I might develop a crippling disease that would ultimately require a 400-pound mobility aid, but I digress.

Back to visiting my daughter. Or better said: don't come to visit. To fly to LA, I have to give up the Quantum and pray it won't be in pieces when I land. Airlines mishandling thousands of electric wheelchairs every year, according to data from the Department of Transportation. More than one in 100 wheelchairs and scooters transported in the cargo hold are damaged, delayed or lost.

Some wheelchairs are so damaged that they pose a safety risk to users or become unusable. Imagine handing over your prescription glasses and squinting anxiously throughout the flight, only to see them return with cracked lenses and broken frames.

Getting worse. To visit my daughter, I have to give up my bodily autonomy. Running the risk of being treated like a piece of ham. Airline personnel – strangers with vague and doubtful course – will lift me out of the Quantum and transfer me to the “aisle chair,” a small wheelchair used for boarding and disembarking. Once I board the plane, they push me down the aisle, stop at my row and transfer me to my cabin seat. Fellow passengers may or may not be watching. When I land I get to do it all again, in reverse order. And yes, disabled travelers have been dropped or seriously injured when transferred improperly.

The fun doesn't stop there. To have an accessible bathroom, wide-body jets are required, but a wheelchair user cannot reach the bathroom without returning to the small aisle seat to be pushed to the toilet by a crew member. Single-aisle flights currently lack accessible bathrooms, leaving disabled passengers to dehydrate themselves or wear adult diapers. I was completely unaware of this when I could walk.

Let's say I work up the courage to fly. If my wheelchair is severely damaged, the airline must pay the costs for repair or replacement. But it may take weeks or months before I have a mobility aid that works. A loaner chair can work, but not if you need a custom chair. You may miss work or school, and even have to stay in bed. That's a lot to think about at 30,000 feet.

Solutions exist. At the very least, airlines could be required to use universal storage cases to protect power wheelchairs and mobility scooters, or tie-down straps to secure these expensive devices in the cargo hold. But what would really make me feel included would be to stay in my own seat, roll down the jetway and onto the plane, lock myself in the cabin and relax.

Why is it that so little effort has been put into making sure people like me feel welcome and comfortable while flying? Trains and buses are accessible – why not planes? Turns out the Americans With Disabilities Act doesn't apply to airplanes — which explains why I can ride into public buildings, but not on a plane. What rules the skies is the lesser known and relatively toothless Airline Access Act 1986. The ACAA prohibits discrimination against passengers with disabilities – I can't be denied a seat on an airplane – but that's where the protections stop. The standards for accessibility features on airplanes are so grossly inadequate that it seems like a cruel joke.

I try to be optimistic. Earlier this year the DOT identified as target allowing passengers to remain seated in their personal wheelchairs on airplanes, and the Federal Aviation Administration initiated a “research roadmap” to study its feasibility. Short-term improvements include training requirements to better assist disabled passengers and properly store their mobility aids.

In June, Delta Air Lines unveiled a prototype for a standard airplane seat that can be converted into a safe docking station for electric wheelchairs if necessary. Talk about a game changer! I'm telling you, airlines, if you build it, we will come.

In the meantime, I'm here in Boston waiting for my daughter's plane to land, but I'm dreaming of spending Christmas with her in LA. I see it now: The Quantum and I, covered in tinsel, rolling down the jetway, neither of us. worse for wear.

Suzanne Costas is a licensed, independent clinical social worker in Boston. In 2008, she was diagnosed with inclusion body myositis. Over the course of 15 years, she went from using a cane to a walker and finally in 2021 to an electric wheelchair.

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