Growing up with Tourette’s Syndrome, I have always dealt with feeling different. When I was young, other kids didn’t understand my tics, and adults assumed I was being problematic. Children and adults alike asked me why I was doing what I was doing, and would ask me to stop. Since getting older, however, my peers have learned not to ask questions, and the adults have stopped assuming that I do it on purpose. Although they do not talk about it, I still feel alienated by my tics. I see classmates stare at me during lectures and I notice their whispers to one another. I see people across the dining hall point at me when I am having tics. The stares in class lead me to struggle to suppress my tics and often result in me missing out on important comments from my professors.
Since starting college, I have had some difficulty getting proper accommodations from the Disability Resource Center. Unfortunately, nobody specializes in Tourette’s. Sometimes it seems as though the staff at the DRC only pretend to care and act as though they understand how my tics affect me. At a recent meeting, I met with a disability specialist after my doctor submitted paperwork requesting that I be granted additional time for tests, quizzes and labs. I was surprised when she demanded that I tell her why I thought I deserved extra time, and dismissed my problems as insufficient. She told me that I should not be allowed to use my Tourette’s as an excuse for not finishing tests or quizzes when I should be spending more time studying. This was hard for me to deal with because I know that I study even more than what was expected of me, and I go into every exam with a solid understanding of the material. However, I was struggling to finish tests because of the time my tics, or suppressing them, took away from my work. Despite a detailed explanation from my doctor, my neurologist’s recommendation was ignored.
Another time that I have struggled to get somebody to understand what it is like to have Tourette’s was when I gave my accommodation notification letter to one of my professors. He asked a lot of questions and offered solutions to my “problem” that made it clear that he did not understand what my challenges are. He also tried to make jokes about motor tics being “free workouts.”
I do my best to make good use of the resources that I have more control over. I regularly attend my professors’ office hours, participate in study groups and attend optional recitations, lectures and seminars. Because of the above situations, and many more like them, I have learned to be my own best advocate. I do not always win, but my hope is that the more I fight for myself, the more educated the disability resource system will become and, hopefully, I will be making things easier for the next student with Tourette’s.