I haven’t always been proud of my disabled identity. As an impressionable grade-schooler, it’s a struggle to maintain pride in what the outside world tells you is your biggest, most unfortunate, and most regrettable flaw. Until the age of 11, I was vehemently opposed to using any type of mobility aid, especially in public, because I thought it meant I was failing or disrespecting my body’s supposed innate ability to function normally.
Although I had no idea what the term meant at the time (I was barely in double digits), my internalized ability prevented me from seeing a world full of wonder, lots of fancy wheelchair accessories, and the promise of not having to maintain the balance. on the see-saw between becoming “normal” and having a life. Now my wheelchair is normal and I love it.
I named my current wheelchair “Harriet the Chairiet,” based on both the Harriet the Spy novels that I loved when I was 12, and my addiction as a writer to a well-developed word game. Together we have survived the first three years of high school, a troubling choice, and the transition to adolescence with only minor battle scars: she has a permanently bent footrest from too many confrontations with inaccessible bathroom doors, and I have battled the acne. and adolescent bad mood.
With Harriet’s help, I was able to go to movie nights, eat popcorn, and lose track of time talking to my friends while dreading the inevitable “Where are you?” text message from my mom. Harriet goes to the concerts with me, but she stays behind when I’m experimenting in the kitchen, because the last thing I need is for her to get covered in flour. Harriet has brought me joy and independence, and she has helped me become someone who is proud of both her mobility aids and her disability. She’s been the companion of my own coming-of-age story, but now Harriet is getting closer to retirement. Her wheels crash instead of glide and her battery can barely last a full school day, let alone an increasingly crowded after-school social life.
I know I need a new wheelchair, but with the five-year insurance clock approaching my wheelchair evaluation date, I’m worried about taking the risk of receiving a chair that doesn’t fit my needs. When I attended my last annual wheelchair test, I knew I was going to have to fight to retain that joy and, in the process, my identity. I don’t know if it’s my age or the fact that I live in a small town, but my wheelchair technician couldn’t hide his surprise that Harriet and I were going on adventures outside of my house or, what appears to be the La The only other “acceptable” option is a health care facility.
Our solo adventures do not challenge the land anywhere; in fact, they are happily normal excursions to the cafeteria or library to work on biology homework. But the wheelchair technicians may also have let it slip that I fly with NASA to Mars every Tuesday. It’s clear that Harriet and I are new to the medical system. But we shouldn’t be.
My next Harriet should be able to handle everything I want to do in the community and in my life. She needs a longer battery life to last a full day at college and enough room to negotiate cracks in the sidewalk. She needs temperature resistant controls so she doesn’t leave me stranded in the cold Chicago winters.
I have my own dreams and the right to pursue them. The right mobility aids give me control over living the life I want. My life should not be dictated by what insurance and the healthcare system deems acceptable. I deserve to have technology to support me in whatever my next chapter is, just like all disabled children. Since young people are the future, we all need the tools to change the world.
Anja Herrman is the winner of the United Spinal Association contest SWTCon 2023 Award for writing.