This is part one of a two-parter that I was originally going to title, “The Cost of Disability” (meant in a very literal sense). I started writing the post, which is a list of things that one needs when living with paralysis, with a short description (including price) of each item on the list. When I got to wheelchairs, I realized that the post would’ve been a lot less cumbersome to write if I had a post that discussed types of wheelchairs and their prices. One problem: the post didn’t exist yet. So here we are!

I wanted to talk about wheelchairs because I’m in the process of ordering one, and because my wheelchair is often the first thing people notice about me. My current wheelchair is a TiLite manual chair with blue spokes – I’ve named it Sexy (for those who get the “Doctor Who” reference, we need to be best friends). All of my wheelchairs have names. There’s Clunker, the hospital rental with terrible brakes that was darn near impossible to steer and propel efficiently by myself; Speedy, the power-assist chair I used from my senior year of high school until the beginning of my junior year of college; and Spiffy, the power-assist chair I used in my junior and senior year of college.

For people living with mobility impairments, wheelchairs are basically an extension of our bodies, and they provide a means by which we can get around. It’s important that they fit, that they work, and that they are properly taken care of. I’m going to describe different wheelchairs below and use terms for wheelchair parts that you may not be familiar with. It may be better if you google these terms, because explaining each component is going to make each paragraph twice as long, and Google images may provide better assistance than my rambling.

What sorts of chairs are on the market?

1. The Manual chair: These chairs are self-propelled, and are typically used by people with lower-level SCIs/people with good arm and grip strength. They are typically less expensive than power-assist and power chairs, because there is no battery required. There is lots of debate over which type of frame to get (rigid vs. folding), the material of the frame (aluminum vs. titanium), the type of wheels (standard vs. carbon fiber), sideguards or no sideguards, type of cushion (air, gel, a combination of the two), etc. These debates (usually among wheelchair users) matter, because whenever you order a chair, you have certain things that come standard, and optional costly upgrades. Wheelchairs are expensive as it is (here is an order form where the initial price is $2,775), so any upgrade will have to be worth it. Some upgrades/add-ons are for safety reasons, such as anti-tippers (the things you put on the back of your chair so that you don’t flip over backwards if you pop a wheelie), or for practical or helpful reasons, such as armrests and push handles. To give you an idea of how much add-ons can add on, my wheelchair cost around $4,700.

   The perks of a manual chair are that you can pop a wheelie to get up onto sidewalks when there is no curb cut, and onto subways when there’s a large gap between the train and the platform. It’s also smaller than most chairs, which means you can fit into smaller spaces/hallways, or pack it into your car without having to upgrade to a minivan. The downside is that manual chairs require a lot of effort to push relative to other chairs. The most basic of manual chairs can cost a few hundred dollars, but these will be way too difficult to push by yourself. You can always get a handcycle attachment, but I have no idea if insurance will cover that.

2. Power-assist chairs: This chair is basically power steering for manual wheelchair users. Note how the center of the wheel (the axel) appears to be much larger than it is on a manual chair. This is because the axel houses the battery/other mechanical things. These are way more expensive than manual chairs, and a set of power-assist wheels can set you back $12,000 (at least that’s what my old receipt from the dealer or insurance company says). These are also heavier than manual chairs, which means that if your chair breaks (and mine have), you are stranded with a heavy chair.
   The pros are very similar to those of the manual chair, in that you have wheelie-popping abilities, but you also can go much farther distances than you could in a manual chair, while expending less energy. But the cons are that you have a heavier chair, may have difficulty getting it into a car, and have to be mindful of your chair’s battery life. Also, for some reason I haven’t been able to figure out, when you go downhill in a power-assist chair, it will start to shake uncontrollably. I once veered down a ramp and straight into a wall. I was fine, but my cupholder was not (oh, yeah, pro-tip, get a cupholder that can fit a water bottle).

   I should also note that there are power-assist systems that can attach onto manual chairs. These work for some, but I don’t think they’re meant for bumpy sidewalks. I tried one out and nearly face-planted on the sidewalk outside of my house.

3. Power chairs: These are also referred to as electric wheelchairs, and I’m not actually sure if scooters fall into this category, or if they have their own category, but both types of chair are meant for people with very limited mobility. A non-customized model can cost around $3500 (according to Google, which I can’t vouch for because I’ve never purchased one), which makes them cheaper than power-assist chairs, but most people will customize their chairs and thus pay more for them. This is because no two disabilities are the same, and some customization can’t be avoided.

   The pros are that you can steer your chair with a joystick and use minimal energy to speed down a sidewalk (or go at slower speeds when you don’t feel like running over pedestrians). The cons are that you cannot pop a wheelie, which makes getting on the subway potentially dangerous, and you are stuck with an extremely heavy chair if it breaks. Your chair will also be in jeopardy anytime you get on an airplane, because it gets thrown into baggage with everyone else’s luggage (that goes for any wheelchair, really, except for this model).

As with anything battery-operated, you have to worry about what happens if it breaks. In one case, I was all set to go to a medieval history talk in the afternoon. The building in which the talk was taking place was down a hill from where I was. My chair broke for absolutely no discernible reason, the power-assist shut off (so my chair felt forty pounds heavier), and the mechanism on the wheels started beeping very loudly. Panicking, I pulled myself and my chair into the nearest bathroom and waited for the beeping to stop. I called a wheelchair repair service, and they told me that the soonest they could fix the chair was in two days. I couldn’t wait in a bathroom for two days (the security guard would no doubt kick me out of the building by nightfall), but I scheduled an appointment anyway. A woman entered the bathroom and saw me looking distraught and fidgeting with my wheels. She offered to help me, and so she pushed my chair to her office (which was in that building), and I could see people in the hallways wondering where on earth that beeping noise was coming from. This woman must have had magical powers, because by the time she pushed me to her office, the beeping stopped and the chair resumed full function. I went to the medieval talk and learned lots from Patrick Geary (who I don’t expect you to know, but I think his work is cool). That situation had a happy ending, but I sometimes wonder what would have happened if my chair hadn’t stopped beeping. What would I have done? I don’t know. I guess buy earplugs and wait two days for the wheelchair repairman. In another case, my chair broke, but was miraculously fixed by a kind and brilliant engineering student who happened to live in my dorm.

Based on my very simple breakdown of chairs, you may have noticed that wheelchair prices vary. In general, the more severe a mobility condition, the more expensive the chair. It’s terrible that someone with a more serious, and likely more expensive to care for, condition has to pay more for a wheelchair to suit their needs than someone with more mobility. For instance, someone with a power chair not only has to deal with chair costs, but also the cost of a wheelchair-accessible minivan. I’m sorry to report that I really don’t have any solid recommendations for how to alleviate costs. You could always buy a secondhand chair, but an episode of “Seinfeld” has scared me from ever doing that. For those who have insurance, a good/not terrible insurance plan will cover one chair every four years or so. Some have to wait much longer (I recall someone once telling me they had to wait ten years between chairs).

What happens when you are finally approved for a new chair? First, you would notify a dealer/your insurance provider that you are getting a chair. They would send someone to take your measurements and ask how you’d like to customize your chair. Then, you wait. You wait and you wait. I think when I ordered my first non-hospital chair, the order was sent in April or May. I got the chair in October. The measurements were all wrong. I had to use Clunker until the chair got fixed, which took another long period of waiting.

Want to skip the waiting period? Be prepared to pay for your chair out of pocket. My current chair was paid for outside of my health insurance, as is my future chair. Spiffy, my most recent power-assist chair (which was covered by insurance, thank goodness), ended up not being a particularly good fit, which necessitated the need for an extra chair (especially since I’ve had my current manual chair for about seven years now, which is kind of old for a chair). For some reason, the footrest on Spiffy is improperly placed such that my feet constantly slip off the footrest and need to be readjusted. The back on Spiffy is positioned at a weird angle, so it pushes my back forward and I have to constantly put my hands on my knees to prop myself up. I am thankful that I am in a position where I can afford a chair out of pocket. Otherwise, I would be struggling with Spiffy, its improper measurements, and its faulty wheels (Spiffy is the one that beeped loudly and almost caused me to miss Patrick Geary’s talk).

It’s strange that someone who takes wheelchair measurements for a living could somehow get my measurements wrong, but this is, unfortunately, not an uncommon occurrence. At first, you’d think that improper measurements are minor inconveniences that someone could live with, but they can potentially cause injury. On all of my chairs, my seat is wider than it needs to be, which means that my arms have to extend more than they should to grab the wheels on either side and propel my chair. This can result in shoulder damage. On a less serious, but definitely annoying note, all of my chairs also have weirdly-positioned footrests. I can’t wear heels or wedges (first world problems, I know), because those make my legs spread awkwardly and I feel like I’m nonverbally saying, “OH HEY THERE WORLD, LIKE THE VIEW?” I wore wedges to a formal once and had to tie my legs together with a belt. Could this have been avoided with a better-fitting chair? Perhaps, to some extent.

What I mean to say is that wheelchairs come in all shapes and models, and that a person’s chair choice and design will ultimately depend on their needs (and if all goes well, the chair will actually fit them). They are pricey (particularly if you lack insurance), they require a long wait (especially if you use insurance), and they affect all aspects of your life. I’m having a difficult time thinking of a metaphor that accurately expresses the necessity of a wheelchair for mobility. I would say something like, if you use your legs to get around, imagine a flat tire as a sprained ankle, but that’s wrong. You can get some crutches and wait for the ankle to heal. I’m basically wandering around on a flat tire and can’t get anywhere unless someone can get my chair to a bicycle store. I guess it’s best just to take my word for it that the wheelchair is a mechanical extension of your body.

My new wheelchair will be here at some point soon. I haven’t chosen a name for it yet, but I’m hoping that I’ll be able to get around, save my shoulders from injury, and wear heels with it.