Kayla Whaley has a BA in political science and is currently finishing her Master’s in Public Administration with an emphasis in nonprofit management. She interns for the Atlanta Young Writer’s Institute. Her bookshelves consist almost entirely of kidlit and she writes YA fantasy and contemporary.
Kayla was born with Spinal Muscular Atrophy III, a neuromuscular disease, and uses a power wheelchair.
When talking about my disability, I like to emphasize that while my life is in many ways different than the abled, it’s by no means worse or lessened in any way because of it. I want to re-emphasize that disclaimer for today’s post.
I’ve talked a lot about the ways my disability has affected my body image, my sexuality, my confidence, my social interactions, etc., and all of those things are important to consider when writing a disabled character. But today I want to focus on the ways my disability affects the logistics of my life. I obviously do not speak for all wheelchair-users (as with all disabilities, there is a LOT of variation from person to person), but hopefully this will serve as a good starting point for anyone writing a wheelchair-using character.
Getting ready for the day tends to be when my actions vary most from the typical. Growing up, my parents helped me with these things; in college, when I lived on my own, it was my personal care attendant. For ease, I’m just going to say “carer” here, because the routine stays the same.
Getting out of bed: The first step in any morning is to get out of bed. Simple for most people, but a tiny bit more involved for me. My carer wakes me (one of the benefits of my disability is that I have a human alarm clock, which is much more pleasant than a BEEP BEEP BEEP), and pulls the covers down. I sleep on my right side, mainly because any other position is painful, so my carer rolls me onto my back and onto the sling they’ve placed behind me. I tell them how and where to move me so I’m comfortably centered in the sling. Then they push the medical hoyer lift we use so that its legs are under the bed and the coat-hanger-like part hangs over me. They hook the sling to the lift, then pump me up into the air.
Bathroom: I always go straight from my bed to the bathroom. They push the whole lift, with me still swinging in the sling mid-air, to the toilet. Lower me onto it, and you can probably guess the rest. Then back up into the air I go.
Showering: Assuming I take a shower that morning (sometimes I do it at night, and other times I say screw it all together), they’ll then push the lift over to my custom shower chair. They’ll lower me into it, remove the sling, and buckle me in. This is another perk: I never shower myself. I don’t have the strength or the range of motion to do so, so it’s like being pampered at the spa every time. They wash and condition my hair, wash my body, and dry me off. Showers for me are mostly really relaxing. Sometimes, though, if I’m feeling particularly weak, they’re difficult because it takes slightly more strength for me to hold myself upright in the shower chair than in my wheelchair.
Now, clean and dry, they put the sling back on me, pump me back up, and we go to the wheelchair. (Note: any time they lower me it takes some maneuvering. It’s not a simple push of a button. They have to angle me and find the right speed and usually push against my knees so I don’t land on the edge of the seat. It depends, though. Lowering me into in the wheelchair is easier than the shower chair, for instance.)
Dressing: I wear only dresses. That’s it, that’s all I own. While I like dresses, it’s not exactly a fashion statement; dresses are logistically a whole lot easier to get on and off me than pants or even skirts. This is a particularly idiosyncratic thing as none of the other girls in chairs I know do this, but it’s what works for me. So, each morning, I tell my carer which dress I’d like to wear, and they put it on me.
Getting comfortable: After I’m dressed comes perhaps the most important step: positioning. I always sit with my legs crossed “Indian-style” (I wish I knew of a better name for it). It’s the most comfortable position for me, but I usually need my carer to adjust me to find the perfect spot: move my legs, lift my knees, push me back, etc. I tell them precisely what I need until I’m comfortable. This might mean moving one leg a half an inch, or lifting one knee five times. Even the smallest movements can improve or worsen my positioning. And if I don’t get comfortable, it can annoy and/or hurt me all day, or at least until I go to the bathroom again.
Personal hygiene: I can do most of the rest myself, to an extent. For instance, I brush my teeth on my own, but my carer puts the toothpaste on the toothbrush and turns on the water. I can brush my own hair, but I can’t pull it into a ponytail if I want it up. I can drape a shawl over me (most times, though it can take a few minutes), but I can’t put on a jacket.
I know that sounds like a LOT, but my carers and I have been doing this for so long that we’ve got it down to a science. All of the above from start to finish usually takes only 30-40 minutes. (Longer if I choose to put on make-up, but that’s due entirely to my lack of make-up skillz and not to my disability.)
Most of the rest of the day, I don’t need much help. In high school, the most help I needed would be asking a classmate to retrieve or put away a textbook from the backpack that hung off my chair. I almost never went to the bathroom during school hours, because it was an annoyance and meant I had to miss some of a class period.
In college, I lived on-campus, and campus was small enough that I didn’t have to drive to class. Assuming I didn’t need to go off-campus, the most help I’d need would be running home to go to the bathroom, and help with the occasional door from a passerby.
Now, if I had to go off-campus, things could get tricky. I can’t drive, because while I’d be capable of driving with some training, the modifications I’d need are HELLA expensive. So if I go anywhere, someone else has to drive me in my van. In high school, that meant my parents. In college, my friends or carer. It’s usually not an issue, but it is a consideration.
The biggest difference for me with leaving the house, though, is that I constantly have to be aware of how much I’m drinking. Because I use a hoyer lift to transfer on and off the toilet, I can’t go to the bathroom anywhere outside my own home. Mostly that means two things:
- Make sure I’m not drinking too much of anything (which can make going out with friends for drinks tricky, because alcohol goes through me so much quicker than soda).
- I can’t be away from the house longer than 5-6 hours (and anything more than 5 is pushing it).
That means I can pretty much never go on day-trips or to events that I know will last a long time, unless I’ve already planned a way to go back home in the middle.
Those are obviously not all the differences in my day-to-day life, but barring sadly common access issues, they’re the ones that impact me most and are things abled people may not have considered before. I sincerely hope this is helpful, and if you’re writing a wheelchair-using character and have any more questions, let me know!