I don’t want anyone to think I’m against joking about Tourette’s. With Tourette’s, you have to keep a sense of humor, and it CAN be funny. What I do have a problem with is “Tourette’s jokes” that are just mislabeled coprolalia jokes. While some people with Tourette’s have coprolalia, uncontrollable swearing, the vast majority do not but if the only thing you know about Tourette’s is what you see on TV, movies, internet memes and even the news, you might think that Tourette’s is just about swearing. Laughing at uncontrollable swearing is funny and I do laugh at it but as soon as it’s called Tourette’s I stop laughing.
I know a lot of people think that this is being overly sensitive. I’ve had people tell me I need to learn to take a joke. Recently, I had one woman tell me that her son is blind – and she makes blind jokes all the time, why can’t I just laugh at myself? I do laugh at myself. When my vocal tics sound like Chewbacca, I say I wish I had a Wookie to English dictionary so I can understand what I’m saying. When my walking is interspersed with popping up on my toes and high knees I think of Monty Python’s “Ministry of Silly Walks” and wish my walk could be more like John Cleese’s and less like Michael Palin’s. I laugh at these things and I welcome my friends to laugh with me. When I’m so focused internally on keeping my body under control that I forget to look out for where I’m walking, it’s funny, my friends will probably never let me live down the number of objects I bumped into on a short walk in down-town Toronto. These things are funny, because like the mother of a blind child making blind jokes, they are true. The jokes I don’t find funny are the stereotypes, especially the swearing one.
Uncontrollably saying socially inappropriate words or phrases is called coprolalia. While coprolalia can be a symptom of Tourettes, it is a rare symptom and it is not exclusive to Tourette’s. Coprolalia can also be a symptom of other conditions like traumatic brain injury, strokes and some medications. Less than ten percent of people with Tourettes ever experience coprolalia but it is Tourette’s best known symptom because it is so frequently used in jokes.
It may not seem like a big deal to most people to relate swearing and Tourette’s since coprolalia is a symptom of Tourette’s but as one of the 90%+ of people with Tourette’s who do not experience that symptom, I can say that the stereotype that Tourette’s is synonymous with swearing has had a noticeable effect on my life. It gets old having to explain over and over that, yes, I have Tourette’s; but, no, I don’t swear. It’s annoying to have people tell me they wish they had Tourette’s so they could swear all the time. It’s inconceivable that I have had the experience of one of my tics causing me injury while out shopping and the kind stranger who stopped to help me turned and laughed at me when I said I have Tourette’s – there I was doubled over in so much pain I couldn’t stand upright and she thought I was “lucky” because despite what she had just witnessed, she thought Tourette’s was just about swearing. If that weren’t enough reason to not find it funny, there is also the fact that most doctors who are not neurologists, know as little about Tourette’s as the average person, meaning, they think that swearing is part of Tourette’s so that when a child presents with tics but not swearing, the pediatrician thinks it can’t be Tourette’s. Many of us go years before receiving a diagnosis. I was twenty one when I was diagnosed. Based on my school history, I could have been diagnosed when I was eight, that’s thirteen years of being unable to explain why I did the things I did, thirteen years of being the “weird kid,” and thirteen years of being punished for things that were beyond my control simply because I didn’t have one of the rarest symptoms of my condition. There are many others who have a similar story.
So I don’t find jokes that make Tourette’s out to be just about swearing funny but I’m not without humor. I know that making jokes about uncontrollable swearing is funny, it’s just the Tourette’s label being attached to the swearing that I object to. With that in mind, I’ve edited a few memes I found on Facebook to use the correct term in the joke. Use them; it’s funny because it’s true. See someone sharing one of them in its original form? Send them the edited version. It’s okay to make jokes, just make sure you use the correct term for what you’re laughing about. I welcome Tourettes jokes, as long as they’re actually about Tourette’s and are laughing with not AT a person with Tourette’s.