Remember, don’t ever compromise your rights and be persistent when fighting for your rights. The world is not going to hand you your rights on a silver plate (unfortunately), you often need to educate yourself and stand up for yourself.
I have a friend who is surprised by how many times per year I get discriminated on campus because of my severe Tourette’s. It happens! There literally hasn’t been a year where I haven’t been discriminated against. I can understand why severe Tourette’s is hard to wrap your brain around especially when meeting someone new that has Tourette’s. A small percentage of people with Tourette’s has severe Tourette’s so that’d make even more sense for people to not understand. But really people? I’ve been on this campus for years and people need to have more compassion, especially professors and people in leadership positions. Just a reminder Tourette’s is a neurological condition where a person has involuntary physical or vocal “tics” or symptoms such as shouting, screaming, jerking of the head, blinking, etc. It has to do with imbalanced brain chemicals.
I’m not wanting to bash my favorite college. The reason why it’s my favorite is because despite the few people who aren’t as understanding, most professors and students are AMAZING. The community there is close-knitted and most are super kind and nice. It just becomes exhausting and disheartening to fight every year to reserve my right as student.
The first year I was there in 2009, I took a choir class in the winter. Everything was great and dandy until the choir concert date came close. Choir concert is an event where the choir class sings in front of an audience at a theater after a couple months of practicing singing in class. As time gets closer my Tourette’s becomes worse because I get nervous and anxious knowing id be standing in front of an audience. So, a several weeks before the choir concert, my professor came up to me after class asking me if I could not sing with the class because my Tourette’s seems to have worsened. I was heart-broken. At first I agreed because honestly, I didn’t know how to stand up for myself the first year of college. I didn’t know about Americans Disabilities Act of 1990 until high school! I didn’t know my rights as a citizen here despite my disability.
I came home to my family and friends sharing the disheartening story. They told me to talk to her about it because kicking me out of the concert choir is not right. I agreed. I then emailed and talk to the choir professor and she negotiated saying she’d willing to let me stay there for half of the time. I had to talk to my disability center on campus too, but they wanted me to compromise also. My strong-willed sister told me that compromising my rights is a no-no. So eventually I told the professor I wanted to sing for the whole thing with my classmates. She was so angry at me. Long story short, I sang with my concert in the end with very few tics! I wasn’t sure why. I wished that my choir professor was more supportive though. Afterwards, I sent her a Christmas card to see if we can fix the relationship but she wanted nothing to do with me.
Another instance was when I was taking ballet in 2010, but the dance teacher wanted me out. Eventually I just took Jazz dance because students in the ballet class seemed so tense and stuck up. I didn’t like the atmosphere. With jazz dance, I took the same teacher as ballet because she was the only one who taught all the dance classes. She would constantly ask me why my tics are so bad and tell me to keep it under control. The thing about Tourette’s that you should know is that when you tell a person with Tourette’s to stop ticcing or to keep it quiet, they feel the need to tic more no matter how much they suppress it. Suppressing the tics makes things worse. It’s like if you have the hives and you try not to itch the scratch, you just want to do it more right? The mind of person with Tourettes is interesting. The more you tell them not to do something, the more they’d have to. So, her telling me that didn’t help at all, it backfired. I felt so uncomfortable and stressed in the class all the time. The students were understanding but they had no clue how cruel the dance professor was. She’d pull me aside after class sometimes and always try to talk me out of having tics. That’s impossible! Its equivalent to telling a blind person to stop being blind. I still feel angry thinking about this today because I felt like I allowed her to step all over me and I didn’t stand up for myself enough.
There was another time where I took this Model United Nations class and the professor chose me and four other students to attend a conference in Galapagos Islands. I wrote an essay about why I should be chosen and got picked! But administers at the college campus was afraid of liability and didn’t want me to travel with my professor and classmates. I fought hard for two months to take this trip with my classmates. That’s basically almost an entire quarter! I failed my economics class because of the hardship. I couldn’t focus in my classes because almost every day I spent time emailing, calling, and meeting with the administrators and leaders of the campus to fight for my right to participate. Eventually, they let me travel to Galapagos. I just had to be persistent. I had a lot of support networks too that helped me through this process. I just wished I applied for a hardship grade during that time instead of letting myself receive a D.
There was a weird situation when I was taking a math class where I agreed to do it via webcam in the library because the professor was pregnant and didn’t want me to scare her to the point of miscarriage, which is pathetic to me when I think about it now (because I’ve been pregnant before and the doctor specifically said my hitting and rough violent tics will not harm the baby throughout the pregnancy soooo why would my sounds cause miscarriage at all?). Honestly, I was naïve during that time and was super considerate to the professor but I believe she just wanted an easy out so she doesn’t have to deal with my tics. It’s not like I’m going to stab her pregnant stomach with a pencil as a tic. They’re just SOUNDS.
Honestly, thinking about it now, some of the people who worked in leadership positions on campus never looked out for my best interest. They looked out for the political interest of everyone. It’s quite sad because you think that’s the whole point of being in a leadership position… to lead and to love.
I’ve learned a lot through these experiences. I don’t want anyone with Tourette’s or any disability to go through what I had to go through, and if they did, they’d knew how to handle the situation. I can’t prevent anyone from being discriminated against but I can offer tools, techniques and knowledge. I hope this post was helpful for anyone who Is a student with Tourette’s or other conditions. Remember, don’t ever compromise your rights and be persistent when fighting for your rights. The world is not going to hand you your rights on a silver plate (unfortunately), you often need to educate yourself and stand up for yourself.
The idea of the surgery I had is to reroute my circuit. I find brain plasticity fascinating and how DBS surgery can potentially rewire the brain! Think of it this way, having Tourettes is like being on a freeway that goes in circles. Lets call it the Tourette’s circuit. You keep going round and round and round, ticcing, ticcing, ticcing. But DBS allows you to find a potential detour. That detour can potentially lead you to creating a new circuit so you can off the Tourette’s circuit. So it takes a while to see results when it comes to brain surgery. It doesnt happen over night. It happens over the course of a year or so sometimes.
It's Tic Time 