Sorry For The Inconvenience 

 

When booking a flight on any airline does anxiety of losing an appendage like your arm(s) or leg(s) ever cross your mind?  If your answer is no, congratulations. If your answer is yes, then there’s a strong chance you are someone who uses a power wheelchair. For those like myself, a power wheelchair provides mobility and freedom otherwise not possible due to physical limitations. If you’re a pALS (Person with ALS) for example, you can suffer from atrophy in your legs which could make walking any distance difficult... if not impossible.  In my view, power wheelchairs were created to alleviate stress and provide a way for people like me to still participate essentially in regular everyday life.  Hence the idea and reality that a power wheelchair substitutes as legs or an appendage. 

 

I recently traveled from Phoenix to Denver on a United Airlines flight for a conference on neurodegenerative diseases.  Ironically, we were asked to speak on the mental health aspect of living with a terminal disease.  As a person living with ALS aka “Lou Gehrig’s Disease” the anxiety of possible issues with my power wheelchair were exorbitantly high a week before the trip. We called the airline to give information about the Quantum i-Level power wheel chair. The customer service agent was kind enough to upgrade me and my nieces seat to Economy Plus! I was overwhelmed by the kind gesture. When we arrived at the airport a young lady asked where we were going, then advised us of the lane to use to check in and our gate number.  We arrived at the gate to find four attendants seemingly waiting on us. When I thanked one of the attendants she said “See...you probably thought you wouldn’t get any help.” And she was correct.  I didn’t think we would get that kind of help but I truly appreciated it. The attendants helped get me to my seat and they took care of my power wheelchair from there. Heading down the jetway to board the plane an attendant saw my knee sleeve and said, “They want you totally off that knee huh?”  She clearly didn’t know my condition so I gently replied “Well I have ALS so…” We both smirked at each other and she said with her hand out “Yeah...That’s a little different. Come on and let’s get you on this plane.” 

 

Once in my seat, my anxiety subsided and a huge sigh of relief washed over me. 

 

Arriving in Denver, two gentlemen helped me out of my seat and walked with me literally hand in hand safely off the plane.  I was greatly appreciative and thankful of this experience...that is up until we are off the plane. Immediately, I could see the steam spewing out of my wife’s ears. My fears were now my reality!!! Cargo hold employees cut a cord while loading my chair onto the plane, rendering the chair inoperable and absolutely useless. While out of town for the next four days, dealing with the airline would be the theme of our time. 

 

My chair is brought to the hotel and left with my niece WITHOUT ANY PAPERWORK. The airlines idea of fixing the chair was a flimsy useless piece of tape around the cord. Not electrical tape for an electrical cord.  That would’ve been too much like right.  Plain old white tape was used. Fortunately for me,  the foundation hosting the conference went out of their way and rented me a functioning scooter in the meantime.  Although I could now move around while we continued to go back and forth with the airline on the phone, sitting in the rental scooter for long periods of time killed my back.  Due to the unbearable pain in my back and legs from my positioning in the rental scooter,  we were unable to stay and participate in the main discussion we were brought to take part in because I had to leave early. 

 

On day 3 of our four day visit they sent a power chair that looked like it was made for a child.  Later,  a technician came.  It took him (and I’m being generous) a mere five  minutes to reroute the white non-electrical taped wire and get my chair to work enough to use it.  Stuck between thankfulness that I could somewhat use my chair and pissed it took so long for such short work to be done, I was able to finish the conference comfortably. 

 

But we still had to fly back home. 

 

My anxiety kicked in heavy the morning of our return flight. But I was determined to stay positive. I get the chair to the plane and show the attendants how to manually push it.  I explain, “There’s no need to touch any cord, any wire, or any controller. Just push.” We board the plane and then the rest of the passengers. I heard the rumbling under the plane stop and I’m hopeful that my chair was loaded safely. After some time, I realize the plane is fully loaded but we’re still sitting at the gate.  Out of nowhere, the pilot comes over the loudspeaker and announces they are trying to load a power wheelchair onto the plane and it’s taking some time. “Sorry for the inconvenience, folks” he says.  Trying to stay positive I tell myself it’s taking this long because they’re being super cautious this time.  As I try to calm my nerves, the pilot comes over the loudspeaker two more times apologizing for the inconvenience it has taken to load this power wheelchair. I’m speechless. 

 

We land back in Phoenix. I’m helped off the plane, brought to the bay,  only to find…they broke the chair again!!!

 

Now there’s a discussion on if a ramp agent can push me up to baggage claim and how can they get this wheelchair out the way to get the plane reboarded for the next flight.  I’m pushed up to the gate and parked off to the side, right next to my broken chair.  Me and my broken chair are left in the middle of the walkway on display in front of everyone in line at that gate wondering what was taking so long to board their flight. 

 

Unfortunately this is not a rare occurrence AT ALL.  According to the Business Insider in 2021 approximately 28 wheelchairs were broken by airlines per day.  Pick an airline, any airline -- and it happens. People with disabilities should not feel humiliated or shamed for using equipment made to help them. We deal with enough like other people’s speculations about whatever the reason we are in these chairs or stares of pity or of shame, unwanted conversations, curiosity from people, etc. We shouldn’t feel forced to take a four-hour drive in an accessible van when we could get to the same destination in a third of the time by air. 

 

As my kids watched six firemen carry me upstairs to my bedroom on a tarp because I had no energy left in my legs, all I could hear was the pilot and person at the gate saying, “We’re sorry for the inconvenience” and wondered just what defines “inconvenience.”  It’s been a week and I still don’t have my fixed chair. Sure,  II have a loaner from the airline but it’s not my chair. There should not be a multitude of people with this  same story.  There should not be responses from scooter rental companies saying, “They hear this all the time.”  People with disabilities should not feel the need to leave behind a power wheelchair and their independence to use a manual chair or be carried. 

 

Airlines claim they accept all wheelchairs.  The question is why if you're just going to break and repeat. Guess that’s the customer service standard equivalent to inconvenience apologies to the disabled flier! 

This bill expands provisions prohibiting discrimination against disabled individuals by an air carrier. Specifically, it enumerates certain actions that an air carrier must take or may not take with respect to a disabled individual. It also requires the Department of Transportation (DOT) to ensure that disabled individuals traveling in air transportation are able to file complaints with DOT in response to disability-related discrimination and receive assistance from DOT through a hotline or comparable electronic means.

The bill authorizes an aggrieved individual and the Department of Justice to bring a civil action for discrimination.

The Architectural and Transportation Barriers Compliance Board shall prescribe regulations setting forth minimum standards for aircraft with new or existing type certificates to ensure the accessibility of individuals with disabilities, including those who use wheelchairs. The standards shall address, among other things, boarding and deplaning equipment, seating accommodations, lavatories, visually accessible announcements, and proper stowage of assistive devices in the cargo hold to prevent damage

Maceo Carter 

Living with ALS 5+ years