by: Alex Wegman
For the first five years of our marriage, my husband, Bryan, and I were pretty strapped for cash. Restaurants, movies, concerts, and museums were rare treats, so we found a lot of ways to have free or very cheap fun. A few times, we rode MegaBus to New York City on their $1 fare, stayed in a cheap hotel on points, and walked. Just walked, miles and miles. For two or three days at a time, we’d traipse all over the city, taking in the details in what I think might be the most intimate way to get to know a place. We’ve explored Central Park in three different seasons, eaten chicken pitas, soft pretzels, and hot dogs from a dozen different carts, taken selfies in front of the Rockefeller Christmas tree, gotten engaged at Tompkins Square Park and made a hundred other memories.
Changing Mobility Device Needs
I’m a lifelong ambulatory wheelchair user, meaning I’ve been disabled since birth, and I both walk and ride. In my early twenties, around the time I got married, I was using my manual everyday wheelchair about 60% of the time. We lived on the second story of an old Victorian house in upstate NY, so I couldn’t use it in my apartment, but I needed it for work 100% of the time and often used it for recreation—like our NYC walking weekends. When I was pregnant in my late twenties and early thirties, I couldn’t walk at all and used my chair full time. I got my first mobility device, an electric scooter, before I learned how to walk at all, and my first custom lightweight chair when I was 8. Every chair I’ve had since has opened doors I wouldn’t even be able to knock on without it. Still, it seems folks commonly assume my goal should be to use my chairs as little as possible, to strive for the ever out of reach trophy of walking exclusively.
“Every chair I’ve had since has opened doors I wouldn’t even be able to knock on without it. Still, it seems folks commonly assume my goal should be to use my chairs as little as possible, to strive for the ever out of reach trophy of walking exclusively.”
Ambulatory Wheelchair Users
Well, I suppose if a person can walk at all, in theory they can walk exclusively and only participate in activities they can do on their feet. For me, that would mean staying home a lot, hiring a full time nanny (if I’d even been brave enough to have kids with so little mobility), working only from home or not working at all, outsourcing all of my errands, missing out on hikes, beach days, and the aquarium…I suppose I wouldn’t be married to Bryan, since there’s no way I’d be able to navigate a music festival, which is where we met, without a chair.
Doesn’t it sound like a no-brainer? Alex without a wheelchair can get around okay at home, but can’t contribute much to housekeeping tasks, physical parenting, or errands. Her world is her four walls and that’s about it. Alex with a wheelchair can do some version of almost anything she wants to.
Even so, people have major hang ups about part time wheelchair use. As an ambulatory disabled person, when is it appropriate to consider a chair? Why does it feel to so many people like a chair is the Mascot of Giving Up or indicative of inevitably abandoning lower body function and strength? Are wheelchair use and walking skills as a priority mutually exclusive? Do they have to be? So many questions!
Different Kinds of Wheelchairs
As a baseline, let’s establish an understanding of the different kinds of chairs out there. I love gear, so this is my favorite thing to talk about. There are two main categories:
- Everyday chairs. These can be manual or power, rigid or folding, and can be made of aluminum, titanium, or carbon fiber or composite, which contribute to their weight and performance. Medicare and private insurance typically only cover chairs in this category for permanently disabled folks with a prescription from a physician and a letter from a PT or OT.
- Recreational/active chairs and other gear. This category includes court chairs like basketball, quad rugby, tennis, and soccer, manual off-road and hiking chairs like the GRIT Freedom Chair, power off-road chairs and cycles, beach bombers, WCMX (skate) chairs, sit-skis (snow and water), hockey sleds, handcycles, and more. These are usually not covered by insurance, even for permanently disabled folks, but some, including the GRIT Freedom Chair, may be covered by the VA. Because of the high costs associated with adaptive recreation gear, there are many non-profit funding grants out there.
Benefits of Using a Wheelchair
There’s a good chance that even if someone can get by without an everyday chair, they might benefit from an active chair. I’d argue that even a primarily ambulatory disabled person who wants to continue walking as much as possible should consider a wheelchair under the following circumstances:
- Limitations of stamina, pain, balance, and general safety concerns prevent them from participating in activities that would be manageable if they were seated. This could be travel, shopping, getting outside, a sport, traversing uneven terrain, long distances in general, you get the idea.
- Walking takes so much concentration or effort that they miss out on conversations and social interactions or feel anxious about the chance they might fall.
- Generally, if one has to make compromises on their desired activities because of concerns about walking, a wheelchair is a good idea!
Will a Wheelchair Set Back My Progress?
I believe ambulatory disabled folks’ common resistance to getting their first wheelchair is based in the fear that using a chair will cost them their ability to walk as well or as far or as fast as they can now. Conventional approaches to disability typically focus on making the disabled person appear as close to nondisabled as possible and tell us that bipedal mobility is superior to wheeled for exactly that reason. For me, that breaks down when I look at the quality of my own life with and without my wheels; of course I want to maintain leg strength and walking skills because they make life easier and are good for my health, but not at the expense of doing things I love with people I love!
To quote my friend Katherine Beattie, WCMXer, ambulatory wheelchair user, and coiner of #wheelchairsarefun, “Has part-time chair use set my walking back? Possibly. Do I care? Absolutely not.” After a wheelchair-free childhood and young adulthood, Katherine’s world expanded dramatically when she got her first chair. Now she gets around on her feet comfortably when it’s reasonable, but has both active and everyday chairs at her disposal for when it’s not! For Katherine, the freedom and possibility her chairs bring her are far more alluring than full-time walking.
“Has part-time chair use set my walking back? Possibly. Do I care? Absolutely not.”
– Katherine Beattie
Mobility Is a Spectrum
Here’s the thing, though: Mobility is a spectrum, even among the nondisabled. If maintaining walking skills or progress is important to you, using a wheelchair for certain activities you can’t do on your feet anyway isn’t going to hurt. You just choose to do both, and then you do both.
Bryan and I have been married 11 years now, and I’ve joined him for hikes on foot and in my chair, walked on the treadmill while he works out next to me, trained for handcycling and pushing while he runs alongside. One thing I know for sure is my having the right gear has been instrumental in helping us build a life that energizes us and keeps us active. If commitment to walking exclusively is holding you back from having the life you want, you have choices!
About the Author: Alex Wegman
Alex Wegman is a writer and full time parent, part time sitting down—hence, the enthusiasm for wheelchairs. She lives in the Santa Cruz Mountains where she homeschools her kids and plays outside as much as possible. You can follow her on Instagram and find contact information on her website!