Reclaiming the T-word

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Tourettes Action Research Manager, Dr Seonaid Anderson highlights the systemic misuse of the word 'tourettes' and how this continues to compound the stigma surrounding the condition.

What do politics, sports and rock music have in common? It could be a number of things. But last week it was Tourette Syndrome (TS).  Dave Grohl performing at Glastonbury this year, used Tourettes as an excuse for swearing, MP’s seem to commonly use it as an abusive term and now it’s been used as a short-hand for aggression and bad behaviour in a Grand Prix race.

These mentions in the media would suggest that Tourettes seems to be becoming an umbrella term for bad behaviour and is becoming more and more common in general parlance. We know the misconception is that it’s a ‘swearing disease’ - it’s not. Only 10% of people with TS actually have a swearing tic. Why is it acceptable now to use the term Tourettes not just for someone who swears but any type of misbehaviour?

Dave Grohl at Glastonbury said that he was going to swear throughout his act as though it was some kind of rebellion because it was being broadcast by the BBC.

The Mirror Deputy showbiz editor Ashleigh Rainbird, said that in an interview Dave Grohl claimed he was going to repeatedly swear throughout his set and he said “I think I have anxiety-driven Tourette’s.”

It seems acceptable now for our politicians to use the phrase Tourettes in their parliamentary banter. There may be some who remember David Cameron’s comment in an interview in 2012 that sitting opposite Ed Balls, the shadow chancellor, during prime minister's questions is "like having someone with Tourette's sitting opposite you". Let’s not be mistaken and think this is just the lack of compassion from the previous prime minister for disabled people. Unfortunately, it would appear that it’s not just restricted to the Conservative party.

Just this month Paul Flynn an MP from Newport West distinguished himself by joining the ranks of the well-known misinformed by commenting on prime minister questions by saying “I believe what we’ve seen this morning is a sudden outbreak of parliamentary Tourette’s” . He apparently judged that no word other than Tourettes could sum up Theresa May’s use of her seemingly favourite current phrase, ‘strong and stable”, 11 times in the hour-long session.

And where would we be without a contribution from sport? Red Bull team principal Christian Horner last week claimed that Ferrari's Sebastian Vettel had a "Tourette’s moment" when he collided with Lewis Hamilton during the Azerbaijan Grand Prix.

So the impression we have of Tourettes from politicians and well-known people is that Tourettes is about swearing. Wrong. Tourettes is about people repeating themselves. Wrong. Tourettes is about people behaving badly. Wrong.

Tourette Syndrome is a complicated condition which for some reason is considered a fair target for jokes because of the common misconception that everyone with Tourettes swears. Like autism there seems to be a spectrum of difficulties with Tourette Syndrome. After hearing more about this condition you may re-consider your long-departed Uncle Albert in a slightly different light. His quirky sniffs and coughs, which were always part of him, may be today regarded as motor and vocal tics, which may actually lead to a diagnosis of Tourette Syndrome. His tics may never have caused him much bother and were really part of him and accepted by all around him. This is at the ‘light’ end of the spectrum of Tourette Syndrome. However, if we move to the more difficult and complicated end of the Tourette Syndrome spectrum, we hear the story of a young lad who has lost the vision in his eye due to an eye-rubbing tic. Another young man is permanently wheel-chair bound due to spinal cord damage from a severe head tic when he throws his head violently backwards.

This huge scale of difficulties with TS makes it difficult to explain it neatly to people. However these are only the tics! This is the tip of the iceberg in some cases. Some people with TS say they manage fine with their tics but describe the additional difficulties that come along with TS as the most disabling – the ADHD, the OCD, the depression and anxiety problems. TS can deliver a double-whammy of being both physically and socially disabling. Recent research from Sweden found that having Tourette Syndrome and Chronic Tic Disorder was associated with substantial risk of suicide.

Has there been a turning point in the public domain where it became acceptable to use Tourette Syndrome as a term of abuse? People would certainly be shocked and appalled if another condition such as epilepsy or Down’s syndrome were used in this way. An example from the charity sector is The Spastic Society who found people’s attitudes and behaviours so entrenched that is held them back and that the  word 'spastic' had become a term of abuse. Therefore in 1994, The Spastics Society became Scope.

Perhaps we need a complete sea-change, is there some way the name of Tourettes can be saved from the grasp of popular culture and stop it being used as a pejorative term, and used in such a misinformed way? These public figures perhaps have not even thought about the impact of using the word Tourettes in the way they have. It’s really a missed opportunity to inform everyone about what Tourettes is, and what it’s not, and generate acceptance for people with Tourette Syndrome and their families. What would create the most public awareness and reduction in stigma would be a public figure, like one of those mentioned at the start of this article, to stand up and champion the cause of Tourette Syndrome and the people who have it.

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