Challenging stereotypes about Tourette syndrome

http://www.theguardian.com/commentisfree/2016/feb/29/challenging-stereotypes-about-tourette-syndrome

Version 0 of 1.

A group of people seeking to change the way their disability is viewed and reported is those who have Tourette syndrome. An aspect of the coverage of what is an inherited neurological disorder is the association of the condition with swearing.

An online review, published last December, of a comedy show by the duo Cassetteboy described their mashup of The Apprentice as showing Alan Sugar “barking ‘bloody!’ like a Tourette’s sufferer”. Matthew Pountney, co-founder of the website Touretteshero, which aims to celebrate and share the creativity and humour of the disorder in an accessible way, complained in an email that the line “like a Tourette’s sufferer” should have no place in the Guardian.

He wrote: “This is something, as Touretteshero, we do our very best to avoid as it reinforces a lot of the stereotypes about Tourette’s that we work hard to avoid. In anything relating to what we do, we ask that ‘sufferer’ be replaced by ‘person with Tourette’s’. This would be preferable in this instance, but it still doesn’t get away from associating Tourette’s with swearing (to make a joke).”

Only 10% of the 300,000 or so people who have Tourette syndrome in the UK have coprolalia, the technical term for swearing tics, according to the charity Tourettes Action. Jessica Thom, the other Touretteshero co-founder, has previously written in the Guardian in 2012 about Tourette syndrome being used as a “cheap joke” when it was used by David Cameron in an interview. He said that sitting opposite Ed Balls, the then shadow chancellor, during prime minister’s questions is “like having someone with Tourette’s sitting opposite you”.

Thom wrote: “For lots of people, Cameron’s casual use of a disability to insult another politician will be shocking. For many other people it won’t, either because they think Tourette’s is a fair target for jokes because of the common misconception that everyone with Tourette’s swears; or perhaps it’s because they’re familiar with the government’s abhorrent attitude to disabled people.”

As my colleague Rory Foster pointed out in an email to Pountney: “While our style guide entry on Tourette syndrome says only that that is what we should call it (not Tourette’s syndrome or anything else), in general we do try to avoid phrases like ‘suffers from’ in order to avoid stigmatising those with a particular condition, disorder etc. For example, our style guide entry on disabled people says ‘We aim to use positive language about disability, avoiding outdated terms that stereotype or stigmatise. Terms to avoid, with acceptable alternatives in brackets, include victim of, suffering from, afflicted by…’.”

In guidance notes for journalists written by the team at Touretteshero, Thom says that she was diagnosed with Tourette syndrome in 2006. The notes go on to say: “Although some aspects of the condition are challenging, Jess does not describe herself as a ‘Tourette’s sufferer’ under any circumstances. Instead she likes to be referred to as a ‘person with Tourette’s’ or as simply as ‘having Tourette’s’. She is ‘brave’ for all sorts of reasons, but not because she is disabled … Only 10% of people with Tourette’s have coprolalia, the technical term for obscene tics. Jess is one of them, but for her such tics make up a tiny proportion of what she says involuntarily. Jess considers these tics to be part of her condition and as such views any attempts to remove them as editing out her disability. However, Jess understands that under some circumstances this cannot be avoided.”

I have been planning to write this particular column for some weeks, but other subjects forced their way to the front. However, I was prompted to remedy my tardy behaviour after Pountney spotted another lapse – arguably a worse one, although in fairness the phrase in question is not considered offensive in the US, where the article containing it was written. The piece, published on 10 February, briefly included the line “considering his reputation for spazzing out like a puppy…” in reference to Kanye West – until it was spotted by an editor and deleted.

Pountney said he was extremely concerned to see it, adding that “this has made me wonder exactly how robust your style guide actually is”. The Guardian’s style guide covers a lot of ground and is being constantly updated, but as we publish 250,000 words a day some things get through. I apologise for these errors, and I am sure colleagues will take note.