To Students With Disabilities Who Are Being Bullied
With complex regional pain syndrome I learned very early on that people, whether intentionally or not, can be cruel. In middle school, shortly after the onset of my CRPS, my classmates were mean. I could tell none of them meant any harm. They just truly didn’t understand the life I was living.
I was still trying to adjust to my diagnosis, my new life, but kids would always tell me they wished they didn’t have to do PE and could just relax like I did. Hearing that always stung because I wished I could do PE. It would have been better than the pain I constantly experienced. On occasion I had to use my crutches at school, but mostly when the pain was too bad to walk my parents let me stay home. It wasn’t until high school that things started to change.
Throughout my high school career, I have shown up to school with everything from a cane to a wheelchair. Having complex regional pain syndrome equipment, such as my cane, is the only reason I can leave the house some days. No one could see that my nervous system is in overdrive; to the naked eye I look “normal.” On days it was too difficult to wear pants due to the allodynia, I would wear leggings or tights. I did not want everyone to see me not only in a wheelchair, but also with a purple, mottled leg. I was not ready to give more ammunition to everyone’s jokes.
At school, kids would always talk behind my back or even tell me straight to my face to stop overreacting. I don’t have a cast or a visible physical disability, so I must just want attention. Obviously I am fine, right? The kids who didn’t tell me to stop “faking” or “looking for attention” would make fun of me for being in a wheelchair or having to use a cane. Everyone seemed to think it was funny to call me a “cripple.” The fact that some days I was not in need of extra equipment seemed to make things worse. Everyone seemed to think it somehow proved I was fine and just wanted attention. No one seemed to understand that it wasn’t my choice — that if it were my choice, I would not have been in a wheelchair.
Freshman year was the hardest. My Spanish teacher would “joke” about me being in a wheelchair right in the middle of her lectures, while the whole class laughed along. On days I was walking just fine she would make a big deal about how I had to be careful because who knew when I would hurt myself next. My disease was always played off as me being clumsy. Despite the fact that she knew perfectly well I had CRPS, she liked “joking” with me about being clumsy. If I ever brought up having brain fog on a difficult day, I was told if I couldn’t be in a high school environment, I should not be in her class.
At the time I had a 504 (a plan that ensured I got the accommodations I needed in order to succeed in school with my disability) and I had hoped she was just trying to be like the kids in the class; trying to “fit in” so the students would like her more. Shortly after, I realized how wrong I was. After coming home distraught that I would be bumped in my new seat and she refused to move it, my dad emailed her and the counselor. My dad was not going to bring up what she would say to me, how I was subjected to being laughed at every day in her class, because I didn’t want him to; it would be worse for me in the end.
The counselor informed my family that preferred seating had not been included in my 504, and it was up to the teacher to decided if my seat could be moved or not. My teacher responded that she would not make any concessions for me while I was spreading rumors about her. Despite everything she said about me, I never spread any rumors. After much emailing back and forth, she said she would move my seat. When she did finally agreed to change my seat, she made sure to point out how I was inconveniencing her. My parents have always been advocates for me just as my dad was that day. I like to think that after this encounter was when I slowly started taking becoming my own advocate seriously.
If I could go back, I would stand up for myself. When these instances used to happen, whether with my teacher or peers, I would blush and try to hide the tears in my eyes. I used to constantly think, “Who was I to stand up to them?” I have since taken up the stance, “Who are they to assume they know anything about my situation and try to put me down for it?” It isn’t up to them to decide if I have the right to be treated with respect that day.
So many people assume I am fine, while that is the farthest thing from true. Just because I don’t need assistance one day does not mean I am cured. My condition does not have a cure, and constant remarks about me being cured does not help me accept my diagnosis better.
People who poke fun of people with disabilities do not see what we go through every day. They don’t understand how many medications we may have to take daily and how many breaks we may need in our days to function somewhat “normally.”
To anyone else, with any disability, I want to say I am sorry you are not treated the way you should be. You deserve so much more than what you have. People can be cruel, but do not ever think you deserve the cruelty. Disability or not, you deserve to know you are loved and respected. I love you and I respect you.
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