It’s a few days after Halloween so I’m probably a few days off from when I should be discussing witches but I have to pose this question. At some point in history did some ancient Touretter upset a local witch so badly that she put a curse on all who have this particular syndrome? Some days it sure feels like it. It seems that it’s not enough that we have to live every day with a condition that is embarrassing and often painful, on top of everything our condition throws at us we have to deal with society’s ignorance and use of Tourette’s as a punchline.
I belong to a few support groups on Facebook. They are closed groups because some of the topics we talk about are embarrassing and people are more willing to talk openly if they know what they say isn’t going to be posted to their friends newsfeeds (of course yesterday Facebook had a glitch which did that even on closed groups, thanks a lot Facebook.) We talk about everything in those groups both the good and the bad. Often it seems that there is a lot more bad than good.
Without being too specific because privacy is an issue here are some of the topics that have come up in the last week:
- Someone’s neighbor called the police because of the sounds coming from their house.
- A parent was having trouble finding a neurologist who treats Tourette’s in their area.
- Someone injured their back ticking and was having difficulty getting around the house because of it.
- A child was having suicidal thoughts but thanks to a family pet found reason to want to live.
- A child was held inside during recess to finish an assignment despite the child have an IEP that specified that recess could not be taken away, they need that unstructured time to burn off extra energy.
- A parent didn’t want to medicate their child but the child wanted to try medication.
- Several parents blamed themselves for not noticing that what their child was doing was Tourette’s and not just a cute “habit.”
- A school tried to tell a parent that their child didn’t qualify for a 504 or IEP because their grades weren’t failing.
- A child received an award for being “most improved” in his class.
- Someone needed an MRI but couldn’t hold still so they had to stop and reschedule for an appointment when they can be sedated first.
- A teen being mocked and physically assaulted by classmates for being different.
- Parents voiced concern over their own anxieties.
- Someone FINALLY got an appointment with a neurologist; earliest appointment available is next year.
- A teacher decided to try and “redirect” a tic they didn’t like seeing in the classroom, the child is now referring to himself as stupid because he can’t stop. (There are methods that can be used to redirect or substitute tics but these should be practiced by trained therapists only, not a teacher)
- We celebrated a few birthdays.
- A family member who doesn’t understand the waxing and waning nature of Tourette’s saw someone during a waning period and insisted that they were “healed by God.”
- Someone was advised by their doctor to start using a wheelchair because tics were making mobility a problem.
- Someone was kicked out of a Wal-Mart for “being too loud.”
- Parents couldn’t agree on the right way to handle their child tics.
In addition to all that we also had a boy reading the book “The Schwa Was Here” by Neal Schusterman in his middle school class. He came across this passage:
It was Howie who suggested the Elephant Man theory. We had all been trying to
figure out what condition Crawley’s granddaughter suffered from that was bad
enough for him to pay me to spend time with her.
“I mean, she’s got to be ugly in some basic, unnatural way to make it worth money,
“Maybe not,” said Ira. “Maybe it’s Tourette’s syndrome.”
“What’s that?” I asked.
“It’s where you have these little seizures and can’t stop curs¬ing people out.”
And then this:
Lexie finally stepped out of the shadows. I didn’t see any¬thing wrong with her at all. Tourette’s syndrome, I thought. Any second she’s gonna start cursing me out.
He went to his teacher and told her that he was offended, she told him to write the author. That was it. There was no class discussion clarifying that that is not what Tourette’s is just “maybe you should write the author.” It took his mother going to the school administration to arrange to have the school counselor come to the class and explain to the class what Tourette’s is and that a member of the class has it but he won’t be cursing anyone out. I’m sorry but this story just royally pissed me off so it needs more than just a bullet point. I’ve read part of the book and it seems like a good middle school level book except for those two passages. I can understand the average teacher using it in a classroom and not even noticing the Tourette’s reference being misinformation because most people don’t know that that is not what Tourette’s is but this was a class with a student with Tourette’s, the teacher knew there was a student with Tourette’s and had no class discussion planned! In a middle school setting where bullying is common that is just giving a potential bully ammunition. He went to the teacher, she had a chance to discuss with the class what Tourette’s really is and didn’t take it. His mother contacted the teacher and still no class discussion. The fact that it took his mother going to the school administration and complaining to finally have it explained to the class that what the book said was not correct is appalling but the sad thing is, it’s not that shocking to me anymore that this would happen. The belief that Tourette’s is about swearing is so common that people don’t feel the need to correct that misperception when they see it, even teachers.
Then there was TV. People post about hearing Tourette’s used in TV all the time. It used to be that we would get angry and respond to a TV show using Tourette’s as something other than what Tourette’s 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’s 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’s 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’s.” Nothing about Holmes behavior in that scene was Tourette’s 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’s. The other bad use was on the MSNBC program, The Last Word on Oct. 30th Jonathan Capehart said “But you know Senator McCain, I guess he just had to Tourette’s 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’s but there does seem to be a trend of labeling politician’s behavior as Tourette’s like. Are people with Tourette’s 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’s 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’s 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’s Syndrome” written on it. When I called him out for using Tourette’s like that when he knows better his response was “FYI that pic that i posted was in no way directed towards you. I hope you didn’t take any offense.” Yes I was offended. This is a friend who knew me when my Tourette’s was at its worst, who knows that I am trying to educate people on what Tourette’s 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’s carries a curse beyond just the curse of having Tourette’s? Tourette’s is an always changing condition of ups and downs but the public perception of Tourette’s never seems to change. I need that to change. It’s not easy watching your friends suffer due to 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?