Getting Around

Transportation is perhaps the most maddening logistical challenge for me, since it’s the only activity for which I haven’t yet been able to cut out sitting completely and I’m limited in where I go alone. But though I haven’t completely cracked that nut, I’ve made things far more comfortable for myself.

Public Transportation

I live in Essex County, New Jersey, which is close enough to NYC to have decent train lines going to and from the city. Which I never do unless I can help it.

On those rare occasions when I travel long distances, trains are my preferred method of transportation, followed by buses. The setup for train cars/buses vary, but many have fold-up seats or a wheelchair section. This is where I usually stand (unless someone in a wheelchair needs the space, in which case I fit myself in wherever I can).

By Car

Driving is one of the activities I’ve sacrificed on the altar of health. For many months it was my bastion of stubbornness, but after my surgery I was forced to give it up and realized this was a case where stubbornness equals stupidity.

Fortunately, my husband likes driving and usually doesn’t mind being my chauffeur. If I need to get somewhere that he can’t take me, I schedule an Uber. I am not normally an early adopter, but when self-driving cars come on the market I’ll be first in line.

At first I was puzzled at how to ride in a car while keeping my spine straight. That objective runs against the engineers’ intentions and takes some effort to manage. After some experimenting, I now recline the front seat as far as it will go and use pillows to make a more or less straight surface that allows me to keep my spine straight.

I have a PT Cruiser, and after my surgery I tried laying in the back like a kidnapping victim or laying down across the backseat. But then I got in a car crash, which made it obvious that I was taking an unacceptable risk by doing so.

On a trip home, my husband (then-fiance) and I borrowed my parents’ Expedition. Fortunately, I chose that trip to experiment with reclining the front seat and making a nest for myself. It was a windy and icy day in winter, and we ended up flipping the car into a snowy ditch.

The car flipped onto the passenger side and the airbags went off. Because I had my seat belt on I wasn’t hurt. (My husband came out the crash shaken but unhurt.) Had I been lying unsecured in the back seat or cargo space I would have been thrown and might not have had a safe landing.

So now I do my best to make the passenger seat work. I have a nest in my own car and test the front seat when riding with someone else or borrowing a car.

When I ride in an Uber I still often lay across the back seat, but so far I’ve only traveled short distances and only in good weather.

By Airplane

I have yet to meet someone who truly enjoys air travel. If there is one sentiment that can unite everyone regardless of their politics or religion it is that air travel sucks. But the way in which it sucks varies from person to person and it’s a unique sort of torture for those with sitting disabilities.

The first time I had to fly after figuring out the sitting connection, I got my doctor to sign a note explaining my medical conditions. I kept this note in a special folder, like it was Charlie’s golden ticket to the chocolate factory.

Alas, none of the airline employees seemed particularly impressed. When the airplane was changed and I was reassigned to a center seat, my doctor’s note did not get me moved to the aisle. When I presented it to flight attendants, they seemed about as interested as if I had handed them a copy of the Affordable Care Act in 6-point font.

I carried that doctor’s note for a few subsequent trips, and then never bothered with it again. Instead, I developed a game plan that made the torture less torturous.

• I always request an aisle seat near the back, close to the bathrooms/flight attendant prep area. This lets me get in and out of my seat easily while minimizing the annoyance to my fellow passengers.
• I bring extra sweatshirts and jackets that I can sit on and put behind my back to make the mandatory sitting part somewhat more comfortable.
• I wait until the last possible moment to board the plane.
• Before takeoff, I introduce myself to the flight attendants. I say something like, “Hi, I know this is weird, but I have a back condition and sitting is difficult. Is it okay if I stand back here when the seat belt sign is off?” They’ve always said yes, though some are more understanding than others.
• I take my Kindle, which is easy to hold when I’m standing in the back for hours. Plus it’s a good cue that I’m not just waiting in line for the bathroom.

Several people have suggested I upgrade or get an exit row seat so there’s more room to stretch out. Personally, I don’t see much advantage in paying more for a seat that I have no intention of sitting in for long anyway, so I stick with coach.

I am aware that some airplanes have seats that can be converted to beds. I actually booked one of these for a business trip to China pre-back problems. They are amazing. The best sleep I got on that trip happened on the flight there and the flight back.

But I don’t think business class is the best option for my present condition. If I have to sit down for takeoff, I’ll need to stand or walk for a few hours and stretch before I can be even moderately comfortable lying down. So I still prefer to book a seat in coach and spend as little time in it as possible.

Contacting the Airline

Before an international flight in 2020, I wondered if there was a smarter way to approach airline travel. I started looking into disabled travelers’ rights, but the results were disheartening. Basically, airlines are not required to give passengers anything for free if they customarily charge for it. So, no free upgrades and no free extra seats. The most you can hope for is your preferred seat assignment (in the class you paid for) if you contact the airline at least 24 hours in advance.

Since I prefer an aisle seat in the back, I still figured it was worth contacting my airline. I learned that most airlines have a dedicated phone number and/or email alias for travelers with disabilities. I contacted my airline (United) with this message:

I got this message in reply:

I sent the airline my last name, and they later confirmed that I had aisles seats both ways.

What the Law Says

After this exchange, I wanted to know what this FAA regulation that mandated I stay in my seat actually said. I was also hoping there would be some loophole that would allow me to wriggle out of it.

The regulation in question is known by the charming and evocative name 14 CFR 91.107. The relevant section reads:

It goes on to list some exceptions, but none of them apply to you if you are an adult flying on a commercial airline. Unfortunately, this wording allows less wiggle room than I would like.

I wonder how one goes about booking a trip in a hot air balloon or an antique airship. That might be a research project for another day.