In addition to everything I’ve read on closed Facebook Tourette Syndrome groups about the stigma, bullying and mistreatment happening to people with TS — and learning about a middle school-level book that paints TS as a cursing problem — we have people posting about hearing Tourette used in TV all the time.
It used to be that we would get angry and respond to a TV show using Tourette as something other than what Tourette really is. We would write letters to networks and post on Twitter and Facebook pages of anyone involved in the show but almost never got any response so we’ve pretty much given up.
This week, there was both good and bad. The good was that the family of a man with Tourette who was being tormented in his community went to their local news looking for help to get the bullying to stop and the story was picked up. The downside to that story is that there was a need for it in the first place.
There were two “bad” uses in TV this week. On CBS’ “Elementary,” when Holmes is spouting his guesses for why Watson and her friend haven’t spoken for a year and a half, Watson quips, “he’s got a form of Tourette.”
Nothing about Holmes’ behavior in that scene was Tourette-like. I can think of a few other things to call it (Asperger’s seem more appropriate to me, but that would probably get a lot more outrage), but not Tourette.
The other bad use was on the MSNBC program “The Last Word” on Oct. 30. Jonathan Capehart said, “But you know Senator McCain, I guess he just had to Tourette it out, he had to get it out of his system.” There was nothing in the clip of McCain speaking that even remotely resembled Tourette, but there does seem to be a trend of labeling politician’s behavior as Tourette-like.
Are people with Tourette not insulted enough so we have to throw in association with politicians? Isn’t that a bit of a low blow to a group that’s already down?
My own week? I didn’t really go out much this week but while running errands I found myself being followed by giggles, and had to explain that I have Tourette several times. I also had an incident when a woman took offence at a grown woman yelling “Ma” in the middle of Target. After a quick explanation of Tourette, she did become apologetic.
I also had a friend on Facebook share a picture with, “Thank you for making me so angry that every time I open my mouth, it appears that I have Tourette Syndrome” written on it. When I called him out for using Tourette like that when he knows better, his response was, “FYI, that pic that I posted was in no way directed toward you. I hope you didn’t take any offense.”
Yes I was offended. This is a friend who knew me when my Tourette was at its worst, who knows that I am trying to educate people on what Tourette really is and he didn’t think I’d find it offensive?!
Everything I’ve written here happened in one week. Just one week, and that wasn’t even everything or from the largest group of people. Is it any wonder why I feel like Tourette carries a curse beyond just the curse of having Tourette?
Tourette is an always changing condition of ups and downs, but the public perception of Tourette never seems to change. I need that to change. It’s not easy watching your friends suffer because of ignorance that seems like it should be so easy to fix. I need to break the curse, but I don’t know how.
I know that the way that attempts to raise awareness are currently handled isn’t working, and my own attempts while they are helping just aren’t reaching enough people to make a dent in the ignorance that is out there. So please, can anyone help me figure out how to break this curse?