When you see someone get out of a wheelchair and walk, don’t be alarmed. It’s not a miracle!
In 2015, I went to Disneyland and passed out by the turnstiles. I reassured everyone I was okay, then proceeded to enter the park and faint again, this time on the raft to Tarzan’s Treehouse. I was taken to a sick bay in the Wild West town of Grizzly Gulch, and spent the rest of the day carousing the park in a wheelchair. It was a game-changer.
I can walk. I am fully able to use my legs and feet and twinkle toes. However, it had not dawned on me just how much energy walking had been sucking from me until I was given a Mickey Mouse-themed vessel that empowered me re-channel my spoons into other activities.
Chronic illness patients often talk about “spoons.” “Do you have the spoons for this?” “I’m low on spoons today.” Spoon theory was coined in a 2003 essay by Christine Miserandino, and it explains a currency-type system where every time you exert yourself, you give away one or more spoons. I prefer to think of it like phone battery. Imagine charging your phone all night because you have a big today tomorrow. Your phone battery will last all day and maybe you’ll get home with it at 34%, ready to recharge to 100% for the next day.
Now imagine charging your phone all night, but it’s only at 56% when you wake up. Or it was at 100% when you got up but suddenly dropped to 56% while you were eating breakfast. You go through your day noticing erratic battery drops. You have no idea if you’re going to still have any battery by 5pm and your day ends at 8pm. You sneak a quick charge at work, but it only helps a little. You either need to cancel your evening plans to get home on a dwindling battery or power the through the night, hoping your phone doesn’t die on you.
Not a perfect analogy, but the latter description is the experience of a chronically ill person. Just swap out phone with body and battery with energy, mobility, wherewithal — any of those things that we take for granted when it’s there.
When my birthday came around last month, I wanted to go to Disneyland again and knew I’d only be able to get through the day if I used a wheelchair to conserve my energy. It worked out cheaper to rent a wheelchair for the month from the Red Cross than for the day from Disneyland. I resolved to use September 2021 as a month to experiment using a wheelchair and a quadripod walking cane (think Carl Fredricksen in the Pixar movie Up). I wanted to get more out of my days and stop turning down invitations because walking had run me down. What could I do, I wondered, with the energy I currently waste standing and walking?
People have assumptions about who uses canes and wheelchairs, and what they use them for. Usually it’s elderly people, people with injuries, or paraplegics. If you can walk, why would you be in a chair? The stand-up comic John Mulaney has this bit in his special New in Town where he says, “I saw […] a wheelchair knocked over on its side… with no one in it. That’s a bad thing to see. Something happened there. You hope it was a miracle… but probably not.” Every time I got out of my wheelchair at Disneyland to get into the Jedi buggy of Hyperspace Mountain or into the abdomen of Dumbo, I worried that everyone was thinking, “Hang on a cotton-pickin’ minute! She’s a fake!” I worried even more when the wheelchair had advanced me to the front of a line leading to queuers to think, “She’s a fake and a cheat!” It’s because it’s so ingrained in everyone’s understanding that if you’re in a wheelchair, it’s because you can't walk at all. So what would someone who could walk be doing in a chair?
This is a public service announcement that a.) wheelchair users can sometimes walk and b.) just because we can doesn't mean we should. Does that make ambulatory wheelchair users freeloaders? I think of it this way: would you rather me use the scant energy I have to do something productive or do something unnecessary? Wheelchairs are efficiency optimisers. Wheelchairs empower the people who need them to get shit done.
I should say that it’s unhealthy to think of disability in terms of being helpful or productive. A lot of the times I’ve exacerbated my health by trying to be helpful or productive when I’ve needed to focus on resting and do nothing. Being more efficient is great, but at the end of the day, people shouldn’t have to be more productive and efficient to deserve mobility aides. The fact it means my legs don’t get shooting pains as often or don’t crumble under me should be reason enough.
I’ll wrap this up for now. I’ve got more blog posts in the pipeline on mobility aides from my month of experimenting. They’re posts about interacting with mobility aide users, weird and wonderful things that happened to me because of the mobility aides, asking for disability accommodations and navigating a wheelchair-hostile city, and what lessons and actions I’m taking away from my experimental month.
I usually write blog posts as a way to pass the time when my mobility weakens and I can’t go about my day. Today I was meant to go to a friend’s print launch and then to my choir’s rooftop rehearsal. Instead, I’ve spent the day resting with a body that’s dead tired and a brain that’s firing on all cylinders. I often feel like just a brain trapped in a box. Yesterday I walked around without my cane or chair and I can’t help but think that’s why I’m in pain today. I’m angry at myself for not using my aides, but blame is only going to make myself feel worse and heal more slowly. I’ve added this addendum to highlight what happens when I don’t rely on my chair and cane.
You can learn more about me on my About page. I’ve embedded an Instagram post from last month about my cane. If you’d like to follow along and read the upcoming blog posts I have planned, you can follow me at @sophiahotungInstagram or Facebook.