Friday 26 May 2006


Stop celebrating Tourette’s

From TV documentaries to Big Brother, why has a neurological disorder become so fashionably fascinating?

I’ve never been interested in watching Big Brother, the reality show on Britain’s Channel 4 where people sit in a house together for 12 weeks and then someone wins. So when Brendan O’Neill - spiked’s deputy editor - asked me to write an article about Tourette’s Syndrome because everyone is talking about the fact that one of the BB contestants has it, I feared he would encourage me to watch the show….

Twenty-four-year-old Pete Bennet, a contestant in this seventh series of Big Brother, says he entered the house to become ‘a famous Touretter’. Channel 4 has taken some stick for making a spectacle of a young man with a rather freakish condition. Campaigners have accused the channel of ‘exploiting’ Pete; Channel 4’s spokespeople responded by saying that Pete’s inclusion could ‘educate’ the public about Tourette’s Syndrome.

GP and writer Mark Porter agrees. In the London Evening Standard he said his interest in Big Brother is ‘not just the simple voyeuristic pleasure of watching people play up to the camera and make fools of themselves. As a doctor, I am actually learning something.’ The mind boggles.

Porter also says that ‘watching [Pete] during his repeated outbursts, and eavesdropping as he discusses the difficulty of living with the condition, has taught me more about Tourette’s than I ever learned at medical school’. It makes you wonder what he did learn at medical school.

Back in the Eighties, I remember watching a QED documentary entitled John’s Not Mad about how a fellow pupil at Galashiels Academy, 15-year-old John Davidson, and his family coped with Tourette’s Syndrome. Although we all felt for John and what he was going through, we couldn’t really stop ourselves from laughing when, in the local supermarket, he sweetly asked his mother if she wanted some coffee followed by the words ‘you fucking cunt’.

Sadly for John, the documentary was a source of much hilarity. We did not learn much about the syndrome. It may have raised our ‘awareness’, but it definitely did not give us much understanding. All I remember learning was that Tourette’s sufferers swear a lot and twitch uncontrollably.

But John Davidson and Pete Bennet both have rather severe forms of Tourette’s Syndrome. According to the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders - the psychiatrist’s bible - Tourette’s may be diagnosed when a person exhibits ‘multiple motor tics’ and ‘one or more vocal tics’ over a period of one year, with no more than three consecutive tic-free months.  Fewer than 15 per cent of Tourette’s patients exhibit what is termed coprolalia – the spontaneous utterance of socially objectionable or taboo words or phrases.

Tourette’s Syndrome is an inherited neurological disorder with onset typically in childhood. Tics tend to be at their highest severity between the ages of eight and 12, and steadily decline in severity throughout adolescence.

I doubt anyone would have learned any of this from Big Brother. Pete’s selection for the show is nothing but cheap entertainment, and it is disingenuous to pretend otherwise.

Of course Big Brother may raise public awareness of Tourette’s Syndrome, but really, what use is this oh-so-fashionable ‘awareness’? It is, to borrow a phrase that a friend of mine loves to use, ‘as useless as tits on a bull’. Most people are ‘aware’ that heart disease is rife in Scotland. Sadly, that was no use to my beloved mother who died recently – in Scotland – from a massive heart attack, while on a waiting list for heart surgery.

Neither would awareness be much help to my Norwegian nephew who has learning difficulties as a result of a relatively rare and severe form of epilepsy. My brother recently told me that he sometimes wondered what people thought when they saw Magnus’ rather unusual behaviour. Now he has learned not to give a damn. Why should he? What is important to Magnus is that he is loved and accepted for who he is by those near and dear to him, and that he gets the best medical treatment and pedagogic support he can. That some people may look at him as if he’s a little weird is neither here nor there.

Likewise, I cannot see how ‘public awareness’ will help Tourette’s sufferers. Those suffering from Tourette’s need help to develop strategies for dealing with and managing their tics, and, where necessary, medical treatment.

Surely Tourette’s sufferers don’t want to be patronised in the way that Pete has been. The other housemates have even praised him for being ‘different’ and ‘quirky’. He is indulged for his affliction, with his tics and outbursts presented as endearing and cute. If Tourette’s sufferers are celebrated as weird and wonderful, that is likely to make matters worse for them, not better.

One of the things about Tourette’s Syndrome is that it is quite suggestible. The first time John Davidson spat in his mother’s face was after the QED documentary-makers asked the family whether spitting was one of his symptoms.

Pete is in danger of taking the celebrity nature of victimhood to new heights, getting his 15 minutes of fame for nothing other than being ‘a Touretter’.  Now that really is sad.

First published by spiked