It’s 9am, and I’m still in bed. I’ve been uncomfortably conscious for hours thinking about how I will spend my spoons. Gravity pulls like a sickness. Just being awake costs.
I have to go out in public today. I can’t walk or stand for more than 5 minutes without suffering. I need something to sit on everywhere I go. My journeys are a seating map. The grocery store has few seats, and they are often sticky. Aisles and aisles without seating means I have to bring my own. My rollator makes errands possible.
I’m dreading today’s doctors’ appointments. Doctors’ offices and hospitals have seating, but those seats are in sensory spaces that make me stim. I still have the reflex to pace to manage sensory overwhelm, but my body ain’t having it. I’ll gouge my scalp bloody instead.
I can walk when I must. I can push myself through as much as 20 minutes of standing and walking, but the cost is great. I need the rest of the day to recover from such a reckless waste of spoons.
I sometimes long for a wheelchair. Far from being confining, a wheelchair would be liberating. I could stim with movement. I could save some spoons. I could stay below my diminishing thresholds.
I dread the moment of rising from the chair in front of others, though. Getting up from a wheelchair to navigate an inaccessible threshold, reach for something, or simply stretch does not compute for our ableist societies. You are judged a fraud, a fake, someone trying to get something you don’t deserve.
A wheelchair is in my future. Without one, I can’t go on outings with my family without melting spoons. I can no longer push past the shrinking limits of my endurance. I’m using a rollator now, but it can be slow, uncomfortable going. Even with rollator assistance, walking is a struggle with pain and gravity. A wheelchair would be enabling, but using one involves a direct confrontation with systemic inaccessibility and ableism. Am I up for it? My body becomes more and more convincing about its need for a chair, but I am reluctant to put up with more ableism than I already experience.
Wheelchairs are the symbol of disability. Transitioning to visible disability would avoid some invisible disability tropes, but those would be replaced by other tropes. And the moment I demonstrate that I can still, for now, walk, that symbol becomes an indictment.