I haven’t all the time been pleased with my disabled id. As an impressionable grade schooler, it’s a battle to carry onto pleasure within the very factor the skin world tells you is your largest, most unlucky, most pitiable flaw. Till I used to be 11, I used to be vehemently against utilizing any kind of mobility help, particularly in public, as a result of I assumed it meant I used to be failing or disrespecting my physique’s supposed innate means to work usually.
Although I had no concept what the time period meant on the time — I used to be barely even in double digits — my very own internalized ableism was stopping me from seeing a world crammed with surprise, a great deal of snazzy wheelchair equipment and the promise of not having to steadiness on the seesaw between changing into “regular” and having a life. Now, my wheelchair is my regular, and I like it.
I named my present wheelchair “Harriet the Chairiet,” based mostly on each the Harriet the Spy novels beloved by 12-year-old me, and my author’s habit to a well-developed play on phrases. Collectively we’ve survived the primary three years of highschool, a worrisome election and the transition to teenagehood with solely minor battle scars: She has a completely bent footplate from one too many run-ins with inaccessible rest room doorways, and I’ve fought zits and teenage moodiness.
With Harriet’s assist, I’ve been capable of roll to film nights, eat popcorn, and lose monitor of time speaking with my mates whereas dreading the inevitable “The place are you?” textual content from my mother. Harriet goes with me to live shows, however stays behind after I experiment within the kitchen, as a result of the very last thing I would like is for her to get coated in flour. Harriet has introduced me pleasure and independence, and he or she’s helped me develop into somebody who’s pleased with each her mobility aids and her incapacity. She’s been the sidekick in my very own coming-of-age story, however now Harriet is inching nearer to retirement. Her casters bump as an alternative of glide and her battery can barely make it by means of a full college day, not to mention an more and more packed after-school social life.
I do know I would like a brand new wheelchair, however with insurance coverage’s five-year clock ticking towards my wheelchair analysis date, I fear that I’m susceptible to receiving a chair that doesn’t match my wants. After I went to my newest annual wheelchair becoming, I knew that I used to be going to should combat to maintain maintain of that pleasure — and my id within the course of. I don’t know if it’s due to my age or the truth that I dwell in a small city, however my wheelchair technician couldn’t conceal his shock that Harriet and I’m going on adventures outdoors of my residence or, what appears to be the one different “acceptable” possibility, a well being care facility.
Our solo adventures aren’t wherever earth-defying — in truth, they’re blissfully regular jaunts to the espresso store or the library to work on biology homework. However to the wheelchair technicians, I’ll as effectively have let slip that I fly with NASA to Mars each Tuesday. It’s clear that to the medical system, Harriet and I are novel. However we shouldn’t be.
My subsequent Harriet wants to have the ability to deal with the whole lot I wish to do locally and in my life. It wants an extended battery life to deal with rolling by means of a full day in school, and sufficient clearance to navigate cracks within the sidewalk. It wants temperature resistant controls to not go away me stranded within the bitterly chilly Chicago winters.
I’ve my very own goals and the fitting to chase them. The best mobility aids give me management over main the life I wish to. My life shouldn’t be dictated by what insurance coverage and the well being care system deem acceptable. I need to have expertise that helps me by means of no matter my subsequent chapters could also be — as do all disabled children. Since younger individuals are the longer term, all of us want the instruments to alter the world.
Anja Herrman is the winner of United Spinal Affiliation’s 2023 SWTCon Award for Writing.
