I spent 3 years traveling extensively throughout Asia with my husband. During those travels we experienced constant roadblocks and hurdles related to his disability while traveling. Some of them were:
Losing his seat pad, his side plates that prevent his hips from rubbing on the wheels, breaking the wheels when removing them, not having bulkhead seating even though it was requested, not having his chair for him once the plane landed (we often had to wait for an hour or more), not having his chair AT ALL and having to use one of their complimentary, terribly uncomfortable, oftentimes broken wheelchairs and then, to add insult to injury, having to stay in the airport for HOURS until HIS chair arrived. All of this COMPLETELY out of our control. No matter how much communication, planning or strategy, there was always a hitch.
One time, the airline had to give us an overnight stay at a hotel attached to the airport because his chair wouldn’t arrive until “tomorrow”. The hotel was VERY nice and they gave us an accessible suite – BUT STILL! Who loses a wheelchair?! I asked the airline representative “How would you feel if I lost YOUR legs?” The reply was silence. I mean…What DO you say to that, right?
I have plenty more stories to share, all of the same hurtful, shameful, frustrating nature but the worst of these lovely experiences was when traveling from Asia back to our hometown in Southern California to visit family after two long years abroad.
Imagine our excitement planning outings to favorite restaurants after eating only Indonesian food for two years! Trips were mapped out to see family members and to hang out with friends. We played in bed before our trip talking about all our local spots we wanted to hit up. And, to maximize time, we would also head over and have a look-see by our family doctor just to be safe.
Imagine the anticipation in our bellies as we arduously endured the EIGHTEEN hours of travel time, only to show up to LAX and find that they DROPPED my husbands SEVEN THOUSAND dollar power chair. Oh, and it no longer worked. The worst part about this was we did not have a backup chair. We left that in Asia.
So, we sucked it up and used the LAX standard “complimentary” chair I mentioned earlier to get my husband to his brother’s car. When we arrived to my in-law’s house, where we would be staying for the next 10 days, his brother and I carried him into the house and plopped him on the couch with no idea what we would do next.
The solution from the airlines was this: I send them information for a company that has our exact chair for rent and they will send a rental chair ASAP to our home. They would also purchase a brand new chair and have it in our possession before our return flight. Sounds perfect, right? Yeah…I thought so, too.
The reality of what happened was this: We never got a rental chair. Yes, my friends, we NEVER got a rental chair sent to us. What did we do, you ask? NOTHING. All of those exciting plans never happened. It was roadblock after roadblock getting the rental and, by the time it was all ironed out, it was time for us to go home.
The process of working with the airlines was less than satisfactory. It took up an enormous amount of my time. I spent hours on the phone finding a company that had the chair we needed and getting them connected. Many more hours were spent filling out paperwork and filing claims. I even tried to get them to give us a complimentary flight, with a date of our choice, to do a re-do of this trip since it was essentially a wash – “No” was the final answer for that request. I even had a woman say to me “Ma’am we already bought you a new chair.” To which I replied “um…YOU broke the chair!” It didn’t matter. They refused to give us a new flight.
My husband tends to have a super positive attitude about this whole paralyzed thing for the most part but this situation had him feeling, in his own words, “even more paralyzed.” Now, I am a person that likes to find the lesson, or the silver lining in all situations. So, what was it? Even I, the benefit of the doubt, silver lining chick had a hard time feelin’ this one. BUT we did get a new chair AND it had a few more features and little extras that we didn’t have before. Idk, I wish I could tell you all happy, fluffy things that occurred from this experience but TBH it was, for the most part, crappy (though, if I’m being honest, it was really more profane than just “crappy”). The truth is the silver lining was just to make me feel better about the fact that we wasted thousands of dollars on a trip that sucked.
What the world doesn’t understand is how difficult life is for our wheelchair homies. The simple tasks that able-bodied people perform on a daily basis, are GNARLY, DIFFICULT, and time consuming for people with disabilities, like my husband. You would think something as organized and innovative as the airline system could manage to make traveling organized and innovative for those of us with disabilities.
I am not alone in these experiences. Just google “Traveling with a disability horror stories” and you will find 14+pages on the subject. My hope for the future is the awareness that blogs like this provide will improve the clearly broken system.
I’d like to offer some strategies we implemented along the way to help the drama a bit. We found these tactics didn’t eliminate issues, but they did reduce the frequency of issues.
- Call ahead to let them know you have a disability and request bulkhead seating if traveling for many hours. If you don’t know what that is, it’s the area in the center of the plane that usually has excess leg room. This made it easier for transfers, weight shifts and assisting him with his needs. It may not happen, even though you requested, but when it does, it is THE BEST.
- Remove your seat cushion on your chair and store it in the overhead luggage area.
- Put zip ties in your chair’s backpack and, just before they take the chair from the plane, zip tie your wheels (if you have a manual chair) so they cannot remove those mofos.
- We cut a square of memory foam that is the same size as his seat cushion and placed it on the airplane seat. IDK about you but, unless you have first class seats, we find those chairs are NOT very comfy. Plus it reduces the possibility for pressure sores. Not to mention it came in SUPER handy when his seat cushion was lost that one time…
- When booking your flight, make sure you book the aisle seat; it makes transferring so much easier!
- If you ever run into an issue, pull out your camera. It seems to quickly inspire them to get you what you need (tongue in cheek smiley face).
In the spirit of silver linings I have to say, I do appreciate these uncomfortable experiences. It promoted growth and gave me the ability to turn suffering into an opportunity for creating awareness so that others may not have to suffer as much.
I would love for you to jump on my crazy train of creating awareness by heading over to our FB + IG. Give me a follow and contribute by tagging me in your photos that are in the same spirit of the channel. Hit me up and I’ll tell you how to get the “Slap Up Packet” that I created. It lets people know they affected you by impairing your access.
We are all in this together and the more awareness we create, the faster we will make access better for our community.
I have been with my husband, who is a C4/5 Quadriplegic, for 12 years. After being affected repeatedly by people who don’t understand the necessity for handicapped parking, I started an online “Diary of Need”. It highlights access issues for the purpose of creating awareness to those who have not been affected by a disability. I give them the benefit of the doubt that they are unaware of how serious it is for us because they haven’t experienced it. The idea is to someday take this diary of need and create some legal changes.
I love my life and love being his wife. I get raised eyebrows on a consistent basis because I chose this life, it didn’t happen to me. 4 years after his injury I met him and we have been lap riding it through life since. To me, it’s not a thing. I mean, don’t get me wrong, it IS NOT the easiest life but all lifestyles have challenges. What is important is how he makes me feel. I am the most important thing to him. Everyone is looking for something in a partner. For some it’s money, or lifestyle…for me it’s that. The chair means nothing except that it gives him the ability to experience life.