Nadeeja Koralage looks at the stigma around Tourette's syndrome and the impact of the media

What does Tourette's syndrome make you think of? Ally McBeal or that episode of the Simpsons when Bart had to be put on haloperidol and he s-l-o-w-e-d right down?

The facts

Eminem recently claimed to have the symptoms of Tourette's syndrome--this was later proved to be untrue. The validity of Tourette's syndrome has long been questioned, ever since it was named in the late 19th century. Do people who claim to have it actually have Tourette's syndrome or is it a case of poor social skills and bad parenting?

Tourette's syndrome does exist. The education article on p 12 gives you a rundown of the facts and explains what it is and how it is thought to work. The nature of doing socially unacceptable things at the worst possible times amuses the child in us. Tics are weird; they can make people who see them laugh. Sitting in on a clinic, I was amazed at some of the tics. Tics can be physical as well as verbal and include actions like stabbing a pen at a piece of paper meant to be signed. They are transient, and often after such events the patient's composure returns and they continue going about their business.

For example, if a patient is asked to sign consent, he or she may stab at the paper with the pen. Just 10 seconds later their composure may return and they may be able to discuss the implications of treatment.

Anne Heche played a character with Tourette's syndrome in Ally McBealThe Man Who Mistook his Wife for a Hat by Oliver Sacks²

H is for Homicide by Sue Grafton¹

"I realised there was something wrong. His eyes had rolled back in his head, leaving narrow slits of white around the lower rims. The effect was weird--a sequence of behaviours that set his whole body in motion, culminating in a sound that was half shout, half cough... He drew back from her then, clamping his fingers around her jaw so that she was forced to look at him."

The media

Tourette's syndrome is a peculiar disorder, which is perhaps why it has received so much media attention. The perceived stereotypical nature of the condition appeals to anyone in search of an audience, because viewers or readers will react strongly to it. Feelings of sympathy for the patient, fear of the unpredictable, and amusement at the inappropriateness of the condition are all open to exploitation.

Tourette's syndrome was featured in the US television show Ally McBeal. One of the neurotic lawyer's equally quirky colleagues was defending a client with Tourette's syndrome who had been charged with murdering her husband. The client claimed that her slamming down on the accelerator of her car, thereby running over her partner, was the result of a tic in her leg. Acquitted, the character started dating her lawyer. Programmes such as Ally McBeal should not to be taken too seriously. But it is a situation comedy, supposedly based in reality, giving the impression that people with Tourette's syndrome aren't liable for their actions.

The fiction

To see just how far the fiction of Tourette's syndrome strayed from the fact I looked at four contemporary novels (see boxes). Three stories gave an accurate medical portrayal of Tourette's syndrome; the exception is H is for Homicide. This is important, because it assures the reader it is a genuine condition if they've never heard of it before. Who gives this definition is also an important factor. In the case of the stories by Sacks, the reader is aware that he is a highly acclaimed neurologist and will probably trust his judgment. Walters gives her description in The Shape of Snakes in the form of a letter from the doctor of a patient with Tourette's syndrome, which has a similar authoritative effect. Alternatively, Jonathan Lethem lets his Touretter do the explaining ­ the book is written in the first person. This enables the reader to see that it's a genuine condition.

All of the stories were accurate when it came to describing signs and symptoms. No excessive coprolalia (shouting obscene words) was described. Coprolalia is all too common in the general public's view of Tourette's syndrome (even though it occurs in under a third of patients). In fact, the only place that coprolalia did occur was in Sack's piece about Witty Ticcy Ray, a rock guitarist who uttered obscenities during moments of sexual arousal. You do wonder whether Sacks would have written about a character who did not have this type of coprolalia, as it does make his book a bit juicier to read. However, the coprolalia is mentioned only briefly, and is by no means the point of the story.

In most books, Tourette's syndrome is exploited to extract emotion from the reader. Victim or villain, which is best? Do we want readers with Tourette's syndrome to feel that this is their lot in life, that they will be perpetually prejudiced against by law and society alike? Representation of people with Tourette's syndome may ultimately serve as role models, or highlight a lack of those worth aspiring to. Today's role models can play a huge part in the lives of individuals. It is common knowledge that those who are seen to have overcome great difficulty inspire people in similar circumstances to do the same. Books portraying an excessive victimisation of people living with Tourette's syndrome play down the potential achievements patients can quite plausibly attain with sufficient self confidence and help.

The Man Who Mistook his Wife for a Hat by Oliver Sacks²

Oliver Sacks is a neurologist with a special interest in Tourette's syndrome. He is famed for his anecdotal anthologies about patients he has seen and presents amazing neurological disorders in an entertaining and interesting way, accessible to lay readers. This story is about a brilliant guitarist who has had trouble holding down a job, due to his condition.

"Having Tourette's syndrome is wild, like being drunk all the while. Being on Haldol is dull, makes one square and sober, and neither state is really free..."

The Shape of Snakes by Minette Walters³

Sympathetically written, the Tourettic character in this book is killed off before the story starts. She is presented to be a victim of the society in which she lives.

"Mad Annie... had acquired the 'Mad' label because she pulled strange faces and muttered to herself as she scurried along in a bizarre dot and carry trot that suggested a child playing 'Ride a Cock Horse to Banbury Cross.'"

The result

Tourette's syndrome is a condition that can impair a person's ability to interact with society at large. It usually starts at an age when the patient is likely to be self conscious. Along with the general public's ignorance of its prevalence, this means
promoting understanding of people with Tourette's syndrome is important.

Besides the effect that these novels will have on readers with Tourette's syndrome, they will also reach 100 times as many people without the condition, so the portrayal of Tourette's syndrome should be accurate and educational. Do authors have any responsibility for how patients are perceived in society, or are they permitted all the artistic license they desire? Is it fair for them to exploit the condition in such a way, to intimidate, degrade, and make comedy from situations a person with Tourette's syndrome will find themselves in? Or is this the nature of writing itself, that we are all human and every one of us can be intimidating, degraded, and a source of comedy?

Motherless Brooklyn by Jonathon Letham⁴

This novel, written in the first person, puts the reader inside the mind of a Touretter, detailing thought processes so that it is possible to see the echophenomena and other presenting symptoms bubble up in the character's head before they are released as spoken word.

"Of course after any talk, my brain was busy with at least some low level version of echolalia salad: don't know from Zendo, Ken-like Kung Fu, Feng Shui master, fung bastard, Zen masturbation, eat me!"

The future

Representations of Tourette's syndrome are few and far between, and more are definitely needed. It is important for the media to stop using the syndrome as a negative personality trait. Lethem and Sacks touch upon impressive features of the condition such as creativity and wit. The biggest factor that can make a difference to people's attitudes is to explore how Tourette's syndrome can bring something extra to a person's life.

Bart Simpson was put on Haloperidol and s-l-o-w-e-d right down

"This relationship [with Tourette's syndrome] is often destructive, but it can also be constructive, can add speed and spontaneity and a capacity for unusual and startling [guitar] performances. For all its intrusiveness, Tourette's syndrome may be used creatively, too."²

Witty Ticcy Ray, rock and roll god

1. Grafton S. H is for homicide. London: Random House, 2002.
2. Walters M.The shape of snakes. London: Pan, 2001.
3. Lethem J. Motherless brooklyn. London: Faber and Faber, 2000.
4. Sacks O. The man who mistook his wife for a hat. London: Picador, 1986.