By: Emily Cieplik
A lot of people label me as “disabled” before they even get to know me. I’m not saying it’s bad, it’s an observation, but at the same time these people also see me as disabled and nothing else. They also seem to have this preconceived notion that because I am physically disabled, that I’m also intellectually disabled. I’ll never understand it.
I have Sacrococcygeal Teratoma (SCT). An SCT is a tumor of the tailbone. SCT is a part of my identity because so much of my life revolves around it. Because of the location of my tumor, it affected the size and function of my right kidney and the development of the joints in my right leg. I had multiple surgeries within the first month of my life, two of which I can actually remember. Because my right leg was affected more, it grew slower so for the majority of my growth, my legs were different lengths. Eventually, I had to have a surgery to stop the growth of my left leg and my right leg stopped shortly afterwards. I also later developed hip dysplasia and had surgery to fix that. Between the numerous doctors’ appointments and the way it limits my mobility, there really is no escaping it. At the same time, I use my experience with SCT to relate to others in ways that my friends wouldn’t be able to.
Sometimes if I don’t tell people right away that I have a disability, they act like I lied to them, and quickly ghost me. I get that it may be a lot to deal with, but this is my normal and I have never known anything different. Obviously normal is on a spectrum, but for example most people have two feet that are the same size. A disfigurement isn’t always a negative thing though, it could be as simple as a scar left over from a surgery or missing a finger or toe.
It was just rough growing up with my disability. I didn’t feel like I had anyone I could talk to. When I did talk to people, it was never brought up like having a disability could be a body image issue and then with everyone saying I was an inspiration to them, it made me feel as if how I was feeling was wrong. Growing up I never saw anyone like me in the media and if I did, they were normally painted in a negative light or as needing saving, like Quasimodo in The Hunchback of Notre Dame.
When you grow up disabled you know you’re different and then one day it just kind of hits you that it’s not an “acceptable” difference. I think I came to this realization in first grade; I was a very lonely first grader. It really was cemented in 4th grade when I was used as the “cute disabled friend who I help to make myself feel better,” but the moment I asked for more, like "let’s play at recess" I was met with a “why would I do that?” It’s not cute and quirky. In high school I also developed extremely restrictive eating habits. I remember learning about eating disorders in seventh grade and wondering how it happens to people. I, sadly, do not feel comfortable talking about it now. It’s not as bad as it used to be, but I do still struggle with it.
I originally started riding as an addition to physical therapy. Riding not only helped strengthen my legs a bit but it also helped with my independence as well. I loved to jump with my horse. It was fun to see how high I could jump before it got too intimidating. I use my experience with SCT to relate to others in ways that my friends wouldn’t be able to. For example, my friends have learned what I can and cannot do. Like, if we do an activity, I'm going to need to bring my wheelchair and there is not even a second where it’s a problem.