This last weekend we had a gaming convention in Connecticut. Because it's the school year and my husband has to work, we flew to the event rather than drive. Whenever we can, we drive when we travel, in part because of how hard flying is on me. Being in a car for days on end has it's own issues, but they are much easier to manage than flying. I think trains would likely be the perfect option if they were more common and we may try to make more use of them this summer.
Physically, flying is very demanding. The extensive standing in the airport and changes in cabin pressure in the air are devastating to my body, making it difficult to walk or stand after a flight and causing widespread pain. But the real stress is the experience of it all, what it is like to fly when you're disabled. My experience is different than others, so this is just one perspective, a drop in the disability pool.
When I first started to have trouble flying about 10 years ago, I spoke to my dear An, who was a pro at Flying While Disabled (FWD). She gave me some ground rules:
1. Be prepared. Prep for everything that might happen or go wrong.
2. Be polite and gracious. Never snap at anyone, you may need their help.
3. Don't rush. Small things take longer and there are waits involved that you might not anticipate, so give yourself more time between flights and before and after.
These sound a lot like rules for flying in general, don't they? The difference is, if you break them, you're just the person who didn't have their boarding pass out, was rude, or had to run to make their gate. I'm stranded, without help or options.
In 2012 I began to use a cane on a regular basis, which included flying with it. The first time I did, I was flying JetBlue, which is my favorite airline. Their staff is proactively helpful, something I never appreciated beyond more than good customer service until I couldn't stand in lines, take bags down from the overhead, or run between gates. Now I have more experience and my traveling usually goes like this:
Packing - When packing to fly, I only take carryon items that can fit under the seat, as I won't be able to reach up to remove them from overhead cabins after the flight and flight attendants aren't required to help you (United is particularly bad about this). There was a time when I was a champion carryon flyer, but those days are gone. So I carry a purse and a shoulder bag that can squash a little. I can only pull one rolling suitcase because one hand is taken up with a cane. Suitcase + Drink takes one hand too many.
Checkin - So packed, with a purse, a shoulder bag, and one rolling bag, I head to the airport. Whenever possible, I check bags at curbside checkin so I don't have to try to manage the airport with them in tow. Paper boarding passes are easier than digital ones because I can't keep my phone out while walking with a bag. When airports are busy, I am constantly on the lookout for rolling bags. I've had my cane taken out from under me on more than one occasion, which is both painful and mortifying.
Security - Most airports have a disability line for security, which is very kind since standing for long is painful. Unfortunately, there is one of those lines and if you happen to be at the wrong security gate, you need to walk to find the other one. In the case of Atlanta, my main airport, this might mean walking through the entire airport, as it did this last visit. The TSA and Atlanta Airport Staff offered me a chair twice, which I could have taken, but there are lines in sucumbing to illness that I refuse to cross as long as I have a choice. I can walk, so I do, even though it hurts and it leaves me exhausted. I hate the chair.
I have adopted a uniform for flying that serves to meet both my needs and my standards of attire. Short sleeve or sleeveless shirts in silk or cotton (fabrics which breath and are soft against painful skin), a very soft cardigan, trousers, and broad heeled shoes with socks. The shoes have to give my feet room to swell quite a bit and can never, ever, have ties, as removing shoes in line for security is a balancing act. My cane has to go through the xray, so I borrow the TSAs (which is always too tall). The large bio scanners are a particular challenge, as I have to climb into and get settled with the cane, then give the cane to the TSA agent and put my arms up, trying not to move while shaking. Most TSA agents are incredibly kind and give me their arm the moment the scan is done in addition to returning the cane. I gather all my items, return the TSAs cane, and find a seat. There is no chance of getting redressed while standing by this point.
Waiting to Board - This part has gotten much easier when traveling with someone, but very difficult when traveling alone. I usually try to eat a little something before I fly to make meds easier on the stomach, but I can't carry much while also carrying purse, bag, and cane. Too, long walks are slow and exhausting. This is where rule 3 is really crucial. I also make a point to use the bathroom (you'll understand in a minute).
Flight - I either board first or last. Preboarding can be occasionally difficult when the flight is full and the gates are crowded, making it hard to sit near the gate (I can't rush when they call for preboard) and I have to stand a lot. Sometimes the gate agents will tell me a place to sit to wait and will help me navigate the crowd (see rule 2) but getting bumped and knocked about is common. The ramp down to the plane is misery to navigate as any kind of downhill slant is questionably stable.
The moment I get to the plane, I ask for water to take meds. Most of the time, the attendants are happy to provide. I tend to sit on an aisle so that I can move my legs during flight, but I'm short so I suffer less on middle seats than most. As soon as I'm seated, I take out meds to take before we get started, as well as anything I think I'll want during the flight before stowing bags under the seat. I can't usually bend down during the flight, as flexibility decreases during takeoff. I keep my cane until the last minute, when the flight attendants close the overhead bins, at which point they put it up there for me. The person who opens the bin will have to remove it before they can get their bags (rule 2).
The flight itself is painful, but a combination of music, meds, and mental distractions usually makes it decently pleasant. I have always liked flying. If I want to get up to go the bathroom, I have to call a flight attendant to take down my cane, which draws attention I don't like, so I never do, even at 6+ hours. It's a bit of a pity, as airplane bathrooms are really easy to navigate because they're so small and I can balance more easily.
I get off the plane last so I can go as slow as I want and don't hold people up. I get to the bathroom as soon as I can afterwards.
Baggage Claim - This is one of the worst parts for me. After the flight, I'm in pain and stiff and leaning heavily on the cane. Often, I get to baggage claim late enough that an airport employee has already removed my bag from the conveyer for me. When that doesn't happen and I am traveling alone and not meeting anyone, I either have to wait until all the bags are off or ask for help. I have never had a fellow traveler not help when I asked, but I still hate to do it.
In general, FWD involves a lot of getting stared at (I have actually listened to people try to guess what is wrong with me) and putting myself into the hands of other people, something I hate doing. I've never really understood anxiety before I started FWD, but I do a little now, as I fear constantly that my preparation, friendly manner, and early arrivals will fall through and I'll be stuck in a terrible situation, mortified at best and hurt at worst. I crack jokes and compliment airline employees, TSA agents, and airport staff to try to offset the extra work that I create for them, to make myself pleasant enough that I don't become the low point of their day. I struggle with bags rather than ask for help because I'd rather be in pain than a nuissance and I will cling to my independence as long as I can.
My situation is better than many but it is different than it was when I was healthy. I am always impressed by TSA agents, who have been far more helpful than I ever expected. Mostly, though, it's an isolating experience, compounded with additional pain. Even writing about it is difficult, because you never want to be the person who whines about the difficulties that disability brings. But now you have a glimpse of what it's like to FWD. May you never experience it first hand.
