Money and mobility

Posted by Allen Rucker in Life After Paralysis on August 02, 2018 # Advocacy and Policy, Travel

My older brother died two weeks back after a horrible ten-week struggle with autoimmune encephalitis and prolonged delirium. For me, this involved two trips to Tulsa, Oklahoma, his home – one to say goodbye (unfortunately, he died while I was in the air) and the second for the funeral and interment. I’m now the last survivor of my original family and when I contracted transverse myelitis in 1996, the general feeling is that I would be first to go. My kind of T-10/12 level paralysis, it turns out, is not a death sentence. It’s just a life sentence.

But this piece is not about death; it’s about flying, which may be worse. If you don’t fly, you’re probably weary of hearing the rest of us chair users complain at nauseum about the horrors of flying. I’m sick of hearing my own complaints. I made a trip to Denver from LA not too long ago that was worry-free. Hopped into the first right of aisle seat on a Southwest plane, no stops or layovers, hopped out in Denver, no muss, no fuss, no aisle chair, picked up by my host, and off we went. If all flights were like that…

They aren’t. Going from LA to Tulsa begins with one sad fact – there are no direct flights to Tulsa, or Oklahoma City, or anywhere else in the greater Soonerland area. The main option is a flight to Phoenix or Salt Lake, get out of that plane and into your chair, wait a few hours, then onto another plane. Easy if you are ambulatory, irritating and tiring if you are a chair user, or maybe a senior chair user. You youngsters can probably hand-walk to your seat.

I used a second option on the second trip. Eschewing stop-overs, I flew Delta nonstop LA to Dallas and my nephew picked us up and we drove three and a half hours to Tulsa. Crazy, you say? Actually, being on the road was quite relaxing. We saw the biggest furniture store in the world. We stopped for jerky. We even listened to part of the World Cup on Sirius radio.

But, then again, Delta was no pleasure trip for a chair user. The aisle chair that no one at either airport knows how to use finally lands you -- after much huffing and puffing and multiple strap confusion -- in a coach seat the size of a kiddie chair in a restaurant. You’d think you’d get used to this after dozens of such flights, but you never do. The treatment forever strikes you as idiotic, awkward, technologically the 1950’s, and embarrassing.

Here’s the problem in a nutshell.NOTHING EVER CHANGES. No airline I’ve flown in twenty-two years in a wheelchair has made one tiny improvement in this process. I swear, I think many are using the same aisle chairs from 1985. They clearly don’t give a hoot. No one in upper management has ever been tasked with re-thinking this whole disability-access problem. My guess is probably the only change coming is a new fee for someone getting your chair into and out of the belly of the plane. They are very good with new fees.

Which brings me to my main point – if you have money, most of these problems disappear. Fly first class and you might even avoid an aisle chair altogether and you know you can raise your legs to avoid pooling. Hire a travel assistant – not your spouse, for God’s sakes -- to in and around airports and to lift you over the very common armrest that doesn’t come up, another problem. He or she can keep an eagle eye on your chair, too; I’ve had one completely lost and another damaged on cross country flights. Go to New York with an assistant, have a town car waiting since cabbies hate you anyway, and always have help when you are confronted with a three-foot-deep pothole in the middle of 6th Avenue. Easy.

Carefree mobility beyond a car ride to Trader Joe’s demands planning and perseverance, but the greatest support system is money. Shower them with money and the airlines will treat you, like, you know, a normal person with money. It’s abundantly clear that, without state edict, they will never change their ways. It’s not cost-effective, I guess. You, fellow chair-user, have to do all of the adapting yourself, assuming you can afford it. If not, I for one will be not be seeing the world like older Americans are supposed to do as a birthright. In most cases, at least for me, flying is not worth it.

The Reeve Foundation is actively working with many other organizations to improve travel for individuals living with disabilities. Progress is, unfortunately, painfully slow. One might not realize that air travel is not actually legislated under the American for Disabilities Act, but instead under the Air Carrier Access Act (ACAA). Congress is currently debating possible improvements to the ACAA through the re-authorization of the Federal Aviation Authority (FAA). If you are not already an Reeve advocate, please sign up here. Here you will be able to contact your Senators about improving the Air Carrier Access Act for people living with disabilities. They must hear from us!

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.