On first glance the idea of “planning for spontaneity” makes about as much sense as the latest guide to Medicare. In fact, “planned spontaneity” probably ranks right near the top of the list of most confusing oxymorons — right up there with “deafening silence” and “jumbo shrimp.”
But if you bring up the concept with any wheelchair user, it’s likely that their eyes will light up with the spark of understanding. Almost every chair user has had a much-anticipated adventure or excursion cut short by something as simple as an unexpected staircase, an impassable road or a sudden health need. Without a chair, they’d be minor obstacles. With the chair they can kill the moment and bring a quick end to what could have been an adventure.
Gabby Richards has worked as a reporter and an editor for the Washington Post and has traveled all over the world in her chair. In the 22 years since a car accident left her a C5-6 quadriplegic, she has learned the keys to planning for spontaneity. “It’s all about being able to plan but not boxing yourself in by that plan,” she says. “If you are able to plan for unexpected occurrences, then you’re better able to respond to the unexpected. I plan as much as possible so that whenever something unexpected does happen and I want to be spontaneous, I’m able to do that.”
Like many quads, Richards’ home schedule revolves around when her caregivers are coming — and oftentimes, when her ride is coming. Because of her set schedule, she has passed up many invitations for late-night drinks and last-minute morning meetings. “It’s very difficult for quadriplegics in particular to be spontaneous,” she says. “In the morning I’m locked into when my caregiver comes, so if somebody calls me and wants to meet earlier or something, I can’t do it, because I know what time my caregiver comes and exactly when I’m going to be out of bed.”
Knowing her limitations, Richards says thinking outside the box is critical to taking advantage of opportunities for spontaneity. “It’s just a matter of being creative with things, being realistic and planning like crazy, so whenever you get where you’re going, you’re able to do spontaneous things instead of feeling like you have to have everything planned out,” she says.
Thinking creatively about ways to keep yourself healthy is one of the best ways to increase your ability to be spontaneous. Richards keeps drinking water with her whenever she is out and about. Keeping hydrated can be critical to staving off dysreflexia or UTIs, and you never know when a traffic jam or unexpected delay might keep you in an unfamiliar locale longer than expected. Carrying extra cathing supplies is also a must, but some chair users take it a step further, carrying extra antibiotics. One quad contacted for this story says he asked his doctor to prescribe extra antibiotics when he did have UTIs. Then he takes them with him on trips to nip nascent infections in the bud. Having antibiotics on hand can save one to two days of testing and feeling terrible and get you back in the swing of things in hours.
Google can be another time saver. As a freelance film and media consultant in Philadelphia, Matthew Clark is constantly traveling between some of the busiest metropolitan areas in the country. In addition to carrying bus maps, subway maps and always having multiple backup plans, Clark, who has lumbosacral agenesis, previews areas he hasn’t visited using Google street view to check for any potential obstacles. “It’s probably not how they envisioned anyone using it,” he says, “but it really helps with the chair.”
Having a flat kit with him at all times has also proved useful. He added the kit to his repertoire after a summer of clubbing where he endured three flats in rapid succession.
Clark, 29, says he used to be frustrated about having to call ahead to ask about accessibility or special accommodations, but has found a more relaxed approach to be advantageous. “There are times for [social protest] but sometimes you just want to go out and have a good time with friends,” he says. “If I’m not able to roll with it, I could sit around writing letters and being pissed off for the rest of my life and not have to worry about going anywhere.”
Kelsey Little, 23 and a paraplegic, advises traveling with a good friend who knows your needs and will fight for your rights. She says her friends often throw her on their backs and carry her places she wouldn’t otherwise be able to go. If you’re willing to live in the moment like that, she says the chair can sometimes even help you get in places you might not have otherwise been able to. “All you’ve got to do is be a strong person and talk a bunch of mumbo-jumbo to people and mention the ADA and lawsuits and people will let you by,” she says. “All you have to do is make them think you know more than they do.”
This approach paid huge dividends on a recent trip to Las Vegas. Over a discussion on access, Little befriended some of the bouncers and they quickly became her personal escorts through the craziness that is late-night Las Vegas. “They escorted me anywhere I wanted to go,” she says. “They would let us in through a special gate and we didn’t have to pay.”
Traveling in Faraway Places
Chair users traveling abroad can face a whole other set of obstacles impeding their ability to be spontaneous. Not knowing the language or the customs can seem like minor inconveniences when traveling in countries without curb cuts, sidewalks or, in some cases, even a concept of accessibility.
As the vice president of marketing for wheelchair manufacturer TiLite, Josh Anderson has traveled everywhere from Dubai to China to South America and back in his chair. His advice on international traveling is simple. “It starts getting frustrating if you’re comparing every place you go to where you live,” he says. “My whole thing is, it’s an adventure, every part of it is an adventure, so just figure it out. I don’t find that there a lot of things that you really need to have, but it’s good to kind of think about where I’m going and what I’m going to do and then go for broke.”
After staying in a room where he had to transfer to the floor and crawl into the bathroom on one trip abroad, one thing Anderson always does is call hotels he’s booked in to find out about access. “Typically if I call there are some more accessible rooms than others, though they’re not necessarily accessible by U.S. standards,” he says.
Simple things you wouldn’t do at home, like adding retractable push handles to your chair or carrying extra tubes and patch kit can make all the difference when it comes to seizing opportunities abroad. “For somebody who is in a chair, adaptation is part of everyday life, so why not carry that over to your travel?” he asks.
For Richards, that adaptation takes the form of giving up her power wheelchair for a manual chair with airless tires when she travels to Europe. While the manual chair takes away some independence, it allows her to cope with non-existent curb cuts, cobblestone roads and unexpected stairs. She says that modern technology can give chair users a wheel up on their pre-planning efforts. “The Internet is one of the greatest resources for a person with a disability because you can Google anything and you’ll either find somebody that has done whatever you’re going to be doing before you, or you can connect with people who are going to,” she says. Thanks to Google, Richards knows that when she gets to the ruins at Ephesus in Turkey this summer she’ll need to find two “hunky Turkish men” to carry up a set of stairs.
“What’s cool about traveling is that I’ve never been anyplace where people weren’t willing or overly willing to help you,” Anderson says. He has had Chinese tourists carry him to the top of the Great Wall and had Hungarian business partners carry him all around a boat on a business cruise. “We actually had a great time,” he says, “but if I looked at it from the standpoint of ‘I can’t get around here anywhere by myself,’ it probably would have put a sour taste in my mouth.”
No amount of preparation or planning can change the fact that you are in a chair, but the right attitude and a few hours spent researching where or what you want to do can make a huge difference in how much you are able to enjoy your life.