The Portland quad rugby team and members of three other teams, about 20 wheelchair users in all, were booked on a United Airlines flight from Louisville, Kentucky, to Chicago Sunday night. My teammates and I gave United hours of direct advance notice and told the gate staff we would need multiple aisle chairs and multiple staff to board. They didn’t listen.

What ensued over the next 12 hours was the single worst travel experience I’ve endured in over 20 years of traveling the world as a Paralympian, athlete and wheelchair user.

The flight was scheduled to depart at 5:54 p.m., and when it was time to load, they had just one aisle chair. Despite our calls and warnings before arriving, the airport services company that United uses brought one aisle chair and two staff members to help. One hour in, they finally found a second aisle chair. We then spent two hours sitting in the plane on the tarmac because United couldn’t get their de-icer equipment working. I was traveling with my 7-year-old son, and we were sitting in the last row of the plane.

Sometime after 8 p.m., the plane taxied back to the gate for us to deplane. It took over an hour to unload again. With only one aisle chair and two staff assisting, our 75-year-old team helper, the father of a team member, was forced to help with all the transfers and deplaning.

Off the plane for the first time, the gate area was chaos. Wheelchair users and other nondisabled passengers were all trying to get rebooked on other flights. A gate agent told me and one of my teammates that they couldn’t book us on any flights out of Louisville the next day, either on United or a partner airline. They were trying to get the de-icer equipment fixed, so if we wanted to leave Louisville, we would have to get back on the plane.

The plane never left. We had two more rounds of the same routine. When it was all said and done, United forced us to deplane and reboard three times, claiming all along that we were still going to leave. No one ever arrived to supplement their two staff members and our 75-year-old helper. I had six aisle chair trips, and five-plus hours of unnecessarily sitting on an airline seat.

The flight was supposed to depart at 6 p.m. By 1 a.m., United officially “delayed” the flight until the morning and issued hotel vouchers. With no accessible transportation, quads who couldn’t transfer themselves to a standard taxi had to spend all night in baggage claim. One person had a bowel accident. No one had access to checked luggage or checked mobility equipment.

With United providing no information about how we would be able to get out of Louisville, I canceled my tickets and spent $972 to get a flight on another airline. At 1:30, my son and I finally left the gate. Because I could transfer to a standard SUV, we made it to a hotel at 2 a.m.

The Next Day

The next morning, family that lived nearby drove down to give me and my son a ride to Cincinnati, 1.5 hours away, so we could take our flight on another airline. United couldn’t find my checked luggage and sports wheelchair, so I left without them. Teammates who didn’t have other options waited in Louisville, enduring more delays because United couldn’t find crew for the flight. One of my teammates, having just seen another United flight leave for Chicago without them, said he broke down, nearly sobbing, when the last delay was announced. My teammates eventually made it to Chicago. Their plane was nearly empty because everyone who could had abandoned the flight for better options. The team eventually made it back home to Portland late Monday night. One of my teammates who had to stay the night in baggage claim spent 40 hours in his wheelchair or an airline seat.

My son and I made it to Cincinnati and had smooth flights home from there. Boarding the aisle chair in Cincinnati, I noticed the signs of autonomic dysreflexia — a headache and chills — as soon as I sat on the hard seat. I sat on my cushion for the flight and the symptoms went away, but they returned with every aisle chair transfer after that. A skin check when I finally made it home confirmed my fears — redness on my coccyx, the initial signs of a pressure injury.

At 11 p.m. my son and I made it to Portland and had to try and track down my missing luggage. United baggage claim had received my bag of spare wheels, but didn’t have my rugby wheelchair or my personal luggage. I spent more time filing a delayed luggage claim. At close to midnight, 36 hours after we started the boarding process for our first flight, we finally drove away from air travel hell. My son was asleep before I could get my wheelchair loaded into my truck.

The aftermath has been draining as well. I spent the next two days in a fog, trying to recover from exhaustion and dehydration. Fortunately, the redness on my coccyx is slowly disappearing — one crisis hopefully averted. I’ve been filing complaints and fighting more with United Airlines, who so far is refusing to reimburse me for the $1,000 we had to spend for tickets on another airline. They are offering travel vouchers for a future United flight instead.

United did automatically reimburse the canceled tickets, thanks to one of the passenger protection rules recently implemented by the Department of Transportation. At the same time all of this has been happening, news broke that United Airlines and a coalition of other major air carriers are suing to nullify the new DOT rules strengthening protections for disabled passengers.

As the exhaustion fades, the only thing that remains is anger. The whole experience was, and remains, a failure on the part of United Airlines — a total disregard for the needs or the safety of disabled passengers. The most frustrating part is that our story may have been extreme, but it’s not unique. Wheelchair users go through similar, dehumanizing and dangerous experiences while flying all the time. If that’s not evidence that protections for disabled passengers need to be strengthened rather than rolled back, I don’t know what is. 

Apparently United Airlines did not get the memo about dignified travel for passengers with disabilities. Let the airline know what you think by submitting a United Airlines Complaint Form. It was Flight #3640, and the travel date was Feb. 16.