Wheelchair Investigations

New wheels! I’m so excited to have gotten my first wheelchair! It took a lot of research, and I’m having a really mixed experience with it. Delight! Hope! Frustration!

Sometime in the fall, I started having periodic fantasies of going places being carried on a bed by my friends. I imagined going to events, having a picnic in the park. And it really came into focus for me that while my scooter was improving my quality of life it wasn’t enough. It wasn’t enough because some of my problems are postural. I *never* sit upright with my feet on the floor. So why would I expect that posture to work on a scooter? Despite having upgraded my scooter to one with a larger seat, it still isn’t big enough to sit cross-legged, nor is that really safe with the scooter design. I could get around with one foot down and one foot tucked under me, but that wasn’t much of a solution. So I simply wasn’t going out.

It finally occurred to me that the right wheelchair could solve my postural problems. After huge amounts of research, I eventually found *one* lightweight power wheelchair that folds and reclines.  The customer service seemed good. I asked them some questions. I talked to other ME wheelchair users on FB. I placed my order. I waited. I waited for the chair to arrive from China in a giant wood crate. For the battery and leg lifts to arrive from California. I am still waiting for my headrest, which was back ordered.

A dear friend helped assemble some of the bits when it arrived. And of note, for those of you who struggle with friends and family being unhappy about a wheelchair coming into your life, mine are excited for me!  T was eager to come and investigate the new equipment. Partly because, engineer. Partly because, friend. Most things came together without too much wrangling.

We’re still having some challenges with the leg lifts. I had thought to buy a wheelchair leg pad, and it is giving me partial relief from what appears to be a design flaw.

Once put together, it needed to charge. Once charged, I gave it a quick back and forth in my apartment, just to make sure it was running. There is very little space in my apartment that is wide enough to accommodate a chair, and my primary goal is to use it outside. There is no ramp on my apartment, which is up about 6 stairs from the sidewalk, so I needed to wait until I had someone who could carry it down the stairs for me. How does this work in the long-term? The same way my scooter does: I keep them in my garage. Because of this, another feature I looked for in a chair is the ability to charge the battery independent of the chair.

I headed out on my inaugural spin, incorporating lessons learned from over a year on my scooter, namely, which sidewalks I have a chance of navigating successfully, given the general state of disrepair, problems with curb cuts, tree roots causing paving sections to push up. It was so much harder than I expected.

The wheelchair is rated to climb up to 1 1/2″. If you are an Ithaca local who walks anywhere on our sidewalks, I suspect you are already laughing. It is even worse than you think. I have cataloged a long list of inaccessible locations on my scooter. Now, uneven surfaces that my scooter can handle, the wheelchair cannot. Traverse large gravel on one side? No. Get through an uneven old curb cut? No.

Folks on FB warned me that this class of chairs (the “inexpensive” and portable ones – at $3000 out of pocket, mind you) drift on slanted surfaces. Let me tell you, that. changes. on. every. single. square. of. concrete. sidewalk.  So, uneven surfaces, bad curb cuts, and drift.

The wheelchair is of course operated by joystick, which my scooter is not. My scooter is much more mechanical and physical. The joystick is very sensitive. And must be used to adjust for everything mentioned above. I was swerving all over the place. It was exhausting.

Ironically, on that first trip out I was stopped by a woman and her mother. The woman is middle-age, like me, and lives with a number of disabling chronic illnesses. She was looking for small, liberal cities where she might like to live. They saw me in my chair and wanted my thoughts. Was I happy here? Yes. Because I have a life here. Did I recommend moving here? No. Was it easy to get around on wheels Ithaca in the winter with the snow? No. I just stay inside. Easy to get around in general? No. Easy to find safe, accessible, affordable housing without molds and allergens? Ha ha ha! No.

An ME comrade who is also a wheelchair user recommended practicing in indoor spaces like big box stores with wide aisles. So a friend an I went to the mall. We folded and unfolded the chair and got in in her Forester. I needed to go to Best Buy. Then I got to cruise the entire length of a dying mall. Navigate Old Navy. Try out an accessible fitting room. Go to Target. Navigate an accessible restroom stall and sinks. Try out reaching for a self-pay machine. Go back through the mall. It was also tiring. But easier.

I’ve gone out on a few other excursions since then. I’m still learning and experimenting.

My current analysis: The wheelchair is *so much* better for my body than my scooter; the postural differences are huge. And the ability to get around in my environment is worse.

My neighborhood and city is so inaccessible. I have almost injured myself or flipped the chair on several occasions. Let’s take Wednesday night as an example, I thought I’d sneak out to watch the fireworks. Here’s how it went: I 1) jacked the chair when the leg lifts jammed against the pavement in a curb cut, 2) got the chair stuck in a curb cut, 3) almost flipped the chair back past it’s anti-tip wheels ascending a curb cut, 4) jacked the front of the chair heading down another curb cut, 5) carefully, successfully navigated a curb cut where I’d gotten stuck previously, 6) almost flipped the chair back past it’s anti-tip wheels ascending a curb cut, 7) got the chair stuck in a corner of gravel in my driveway, needing to get out and push it.

In total, in the above journey, I TRAVELED LESS THAN 2 1/2 BLOCKS to a parking lot, and 2 1/2 blocks back. And I went no further because I jacked the chair in a messed up curb cut and didn’t have the energy to fight it anymore. Also, some of these moments are dangerous, and downright terrifying. I’ve been talking to a few other neighborhood locals, and we can only think of two other folks we every see out downtown in chairs, and they both have different kinds of chairs. I’d put a lot of money on the idea that wheelchair users exist, but they don’t bother to fight the inhospitable environment.

So, it’s a complicated experience so far. I’m not quite ready to try to go out with a friend on the sidewalk, because my steering isn’t quite there yet. But it’s getting close. Once i can do that, I think I can try walking my dog, which is one of the things I miss the very most about being housebound. She’s been pretty good with my scooter, so I’m hopeful this can work too. But i’m still going to be very limited in where I can go, until I can find safe ways to get there.