Traveling with paralysis: from a sibling’s point of view

Posted by Reeve Staff in Life After Paralysis on September 26, 2018 # Mobility, Travel

From our 2018 Fall Intern, Brooke:

Everyone runs into the unexpected when traveling. Delayed flights, forgetting to pack underwear, getting lost in an unfamiliar city. But traveling with my family — with my brother, who has lived with paralysis since before I was born — always takes more twists and turns than most people can imagine.

Planning is involved in any kind of trip, but when paralysis and its secondary conditions are present, even more factors must be considered. Is the hotel accessible? How about the public transit? The attractions we want to see? And despite even our best efforts, there always seems to be some kind of struggle or mishap.

Chris has always had an affinity for all things food, architecture, and history. Obsessed with universal design, Anthony Bourdain, and cooking experiments in the kitchen, he loves nothing more than experiencing cultures outside of his own. Traveling is his favorite thing to do and is an ongoing goal of his, which most definitely rubbed off on me. We've always been partners in crime, and few things make me more upset than when his desire to embrace adventure is hindered by the remissness of others.

Too many times, we have arrived at hotels only to find that they aren't truly accessible. Unfortunately, universal design hasn't become the norm, and in our opinion, the ADA needs some serious work. Apparently, what "accessible" means to too many businesses is a wide doorway and grab bars by the toilet. A toilet he sometimes can’t even get to, by the way! Often times, Chris can’t get under the sink to brush his own teeth, so I put the toothpaste on his toothbrush, bring it to him, and hold a cup for him to spit in. Sometimes the bathroom door opens into the bathroom rather than out, making it impossible for him to even get in the tub by himself. So my mom and I carry him in, closing the door with our feet while we maneuver our way in. Sometimes there’s not even a shower chair available, so bathing becomes impossible. I don’t mind helping, but I do mind watching my older brother’s independence dwindle. Luckily, we’re both extremely sarcastic and have learned to laugh about some of it in the process.

The airport, though…that's where we always have quite an experience. The TSA has accused him of having a "suspicious substance" in his shoes, seriously invaded his personal space, and has almost made us miss flights on more than one occasion. As his sister, the worst part is that I can't say much about it because then they'll really find a reason to hold us back longer. Although I would be lying if I said I haven't voiced my annoyance before. Pilots have singled out my brother as the reason why takeoff is taking a while, warranting stares coming in our direction from everyone on the plane. I've emptied his catheter bag into a cup (that I had to argue for with the flight attendant because she refused until I said he could have a stroke) mid-flight because he can't get into an airplane bathroom. All I have to say is airline and airport employees needs to step it up! I think quite a few of them need some anti-discrimination training.

Simple geography presents challenges, too. When we visited Seattle three years ago, I wore shorts under my dress so I wouldn’t inadvertently flash everyone while pushing him up hills and holding him back from flying down one into Pike Place Market. That would be quite a way to make an entrance, though! Chris takes pride in his independence and pushes alone as much as possible, but he also doesn’t want to blow out his rotator cuff by the time he’s 30. Needless to say, I’m happy to help lower those chances. Heat is a big factor, as well. One of his secondary conditions is that he doesn’t sweat, so regulating his body temperature is difficult. We always have to be sure to pack plenty of water and be ready to stop into somewhere with air conditioning whenever he needs it.

Sometimes the worst travel situations allow me to see the goodness of the world, to see people’s hearts in ways that I wouldn’t if I weren’t with Chris. Like the time three men we didn’t know carried him all the way through the light attraction at Rock City on Christmas Day because we weren’t aware the whole attraction involved stairs and narrow cavernous paths. Or the time the only elevator at the supposedly accessible subway stop in New York was out of service, and a man carried Chris all the way to street level. I’ve also had unique experiences I wouldn’t have gotten without Chris, like the time we toured the White House in 2007 and had to take an elevator up, giving us an exclusive peek of one of the kitchens.

Yes, I have more additional responsibilities than siblings of people without disabilities when traveling, but that’s not the part I mind. I don’t care that I have to carry his luggage for him or help him brush his teeth. What I mind is watching my brother being treated like he’s not a human being. Despite the negative experiences, my brother and I still have irrepressible desires to travel around the world, and because I’ve learned how to help him when traveling, we’ll be able to do that together. Once I graduate from college, the plan is to take a trip somewhere abroad. Thank goodness we’ve had years of preparation together!