Saturday, October 12, 2013

The Issue of Inclusion and Exclusion with Tourette's Syndrome

On Wednesday unfortunately I had to go to the campus art museum again, this time with my poetry class. Even though I knew no one would kick me out or probably say anything to me about my tics, I just get so self conscious about my loud vocal tics in new environments that are so quiet and I was still feeling a little emotionally vulnerable/embarrassed from when the professor had singled me out for ticcing during the last poetry class, despite the fact that he really didn't mean to be insensitive or to embarrass me and had even apologized. The fact that I knew we were going in to the art museum though really was working my anxiety up to. We started class outside and even though I wanted to enjoy the fact that we were having class outside, I couldn't because I knew we would be going inside the museum. I wanted to participate in discussion during our outdoor class but my anxiety was just so high that I couldn't. I was doing a lot of vocal tics and wasn't participating in class and that was making my anxiety even worse.

By the time we went inside the museum, my tics were really bad and my anxiety was really high. Luckily though we ended up having a private viewing that had been pre-arranged and set up in a class room in the museum. I was glad when I saw that we wouldn't actually be going into the real museum area but I couldn't seem to shake my anxiety. My motor tics kicked in really badly and I started a new motor tic where I lift my tighten my arms and clench my firsts against my chest and jerk my head downwards and do a bit of a full body jerk as well with it. It's been a long while since i've had a new motor tic. My anxiety stayed high all of class and I didn't say a word in the full hour and a half even though I knew participation is so important. Hopefully the professor will not dock me off points for not talking in class, but my anxiety was just to high to even speak.

After class my professor came up to talk to me me. At first I was afraid he was going to say something about me not participating in class, but luckily he didn't. For poetry class we have a requirement to go to at least one poetry reading and write a response about it. He came up to me to let me know that I don't have to go to the reading and I can just watch a poetry reading online because of my vocal tics. At first I was really glad that he gave me this option. It makes things a lot easier for me not having to worry about going to a reading. But soon it gave me a very uneasy feeling. It was upsetting to me for some reason. At first I wasn't sure why I was so upset my this. I get accommodations in college for taking tests, I get to take them with extended time in a separate room, and I also am allowed to skip a day of class or turn in an assignment a bit late if I have a day where my tics are just out of control  But somehow this was different. Somehow the fact that my professor was telling me to skip the reading made me feel limited and more different than I have felt in a long while. I wasn't exactly sure why, but it made me feel as if I have a disability. I don't think of my Tourette's as being a disability. I don't think of it as something that limits what I can and can't do. I think of it as a disorder that I need to explain to others a lot of the time, but not as something that limits my abilities. I wasn't sure exactly why it made me feel this way, but it did.

Later on that same night my creative writing seminar teacher e-mailed me about our special gathering and reading that was going to be held the next night. In many ways, this reading would be similar to the poetry reading. I was aware the special reading/ gathering was going on for all of the people who are in this special creative writing seminar, but I would have never thought I was unable to go to this because of my Tourette's. The thought had not even entered my mind. My professor for this class didn't think of that either, she didn't think that I wouldn't attend because of my Tourette's. Instead in the e-mail she asked me if I would like her to educate our guests that would be coming to the reading about my Tourette's. This is the e-mail she sent me:

"I meant to ask you this today and forgot. Would you like me to let the guests who are coming to read in the program tomorrow know that one of the audience members has Tourette's and that there may be some random sounds? Forgive me if my desire to be sensitive comes off as insensitivity."

Now that is more like it, I thought! My professor is not asking me if I wish not to attend because of my Tourette's, but instead is assuming that of course I will attend, there may just need to be some education put into place before the event so I can be a part of it.  There is no need to exclude me from events like this, instead there just needs to be a bit of education (which she was willing to help me out with) so that I can be included in the event and not have to be nervous about how the guests will react. This is the e-mail I sent back:

"Thank you for thinking of me and for e-mailing about this. It would be great if you could mention something about my Tourette's to our guests for tomorrow. Probably the best thing to say would be something similar to what I usually say, that Tourette's causes me make noises, say words like "woof" and "no" (I keep forgetting to mention this part because the word tics are so new for me!) and have movements that I can't control.

Thank you again for asking me about this. You have my permission to tell all future guests because it really helps in order to avoid uncomfortable/upsetting situations for me. Guests or professors who don't know will tend to stop their lecture or reading to draw the entire class's attention to my tics by either asking me why I am making noises or by asking me to stop because they think I am either being disrespectful or purposefully joking around to disrupt class. This can be very upsetting for me and telling guests speakers/ professors in advance will mostly always prevent anything like that from happening! "

and then again this was her positive responce:

"Thanks. I will let our guests know. And thank you for suggesting how to phrase the message. That's very helpful. See you tomorrow."

After this correspondence, I knew more of why my poetry professor's comment about me skipping the reading upset me so much. Inadvertently, while trying to help me and trying to be sensitive to about my Tourette's, he ended up excluding me. He did not mean to do this and was really only trying to help me, but none the less I was not being included.

The issue of inclusion and exclusion has never really been an issue for me before growing up in my small bubble and being in an environment where everyone knew about my Tourette's in high school. Even with my loud vocal tics and frequent motor tics, I was never once asked if I needed to sit out of class, if I needed to skip school assemblies and speeches. I was included in everything.

I of course have been excluded in ways before. I think everyone has been excluded at one point in their life or another. As a child,  I was left out of birthday parties given by the "cool" kids because I was "different" growing up. I was excluded from sports games on the playground by other kids because my sensory issues prevented me from being able to play sports like the other kids, and i've been excluded from sleep overs or camp activities or social circles growing up. All of this I am used to and I think everyone knows what this feels like to some extent.

Armed with the knowledge now though of how to express myself, how to deal with my sensory issues, anxiety, OCD, and tics, and how to explain my conditions there is no need for me to be excluded. It's too late for me to go to the reading, since i've already missed the last one on campus. I am not extremily upset though that I missed it. It was a learning experiance that I have not had before. I know now that next time if it ever happens again that a professor approaches me about needing to skip a reading, movie viewing, or another type of event for a class because of my tics, I will strongly stand up for myself and express that I am able to attend these kinds of events. We may need to educate the guests at the event, but as someone said to us at camp, "Tourette's should be used as an explanation, not an excuse." Tourette's is an explanation for why I make noises and move around in different ways, but it is not an excuse for me not to attend events or for the professor/ school to not include me in whatever the rest of the class is doing.

1 comment:

  1. I think I'd be offended by that professor's comment as well - if it was phrased like 'this is an alternative option if you can't face going to a reading' it might be okay, but to make the assumption that your tourette's would stop you going is ridiculous.
    The other professor sounds awesome though, I find it so much easier when my tics have already been explained or someone else explains them, as talking about tourette's makes my tics worse to the extent that it becomes difficult and embarrassing for me to talk.