news.bbc.co.uk/2/hi/uk_news/5259916.stm

BB Pete: Exploitation or education?
By Liam Allen
BBC News

When the producers of this year's Big Brother accepted a man with Tourette's syndrome as a housemate, some accused them of exploiting his condition - which, in his case, includes the involuntary use of strong language - for the sake of entertainment.

As the show concludes, have they changed that view?

The day after the housemates in the seventh series of Big Brother entered the house 13 weeks ago, the president of the UK's Tourette's Syndrome Association (TSA) said it had been against Pete Bennett being among them.

Roy Hillard said that, while he hoped the inclusion of the 24-year-old would help raise awareness of the condition, he thought "on balance, it will have adverse effects".

He said Pete's condition was "likely to get worse" in the house, and said it could lead to children with Tourette's being mocked.


TOURETTE'S SYNDROME
Between 199,000 and 331,000 people with condition in UK
Named after French neurologist Dr George Gilles de la Tourette
Often inherited although its cause is not yet understood
Could involve abnormal processing of brain chemicals including dopamine
Believed to affect up to one in every 100 schoolchildren
Simple tics include eye blinking, sniffing and tongue clicking
Complex tics include jumping, twirling and biting oneself
50% chance with each pregnancy of parent passing on gene to child
Three to four times more common in males
Source: TSA

Composer and writer James McConnel, 48, who has the condition, also initially expressed concern over Pete's inclusion in the house.

Speaking on the eve of Friday's Big Brother final, Mr McConnel told the BBC News website: "I was worried because I do think Channel 4 was looking for a bit of voyeurism."

But the "theatrical" nature of Pete's Tourette's "makes him loveable", he said.

Pete's symptoms include involuntarily hitting his throat and swearing, namely the word "wankers".

Mr McConnel, who has written a book about Tourette's, dismisses concerns that Pete's fame could lead to children with Tourette's being bullied.

"He's a very likeable bloke, a very nice bloke.

"Young kids have a hard time as I did but maybe this will help them. Maybe it will help bullying."

Idiosyncratic behaviour

Author Nick von Bloss, 38, who has also written a book on living with Tourette's, says that at the start of Big Brother he was "incensed" by the "sensationalism" surrounding Pete's entrance into the house.

Young kids have a hard time as I did but maybe this will help them. Maybe it will help bullying
James McConnel

And, after watching much of the series, he is still less than impressed.

"I think Pete's inadvertently doing a lot of damage to Tourette's awareness," he added.

Mr von Bloss said he had observed Pete displaying only two symptoms of Tourette's - the throat-hitting and swearing - and that the rest of his idiosyncratic behaviour, including making faces and putting on voices, was down to his personality.

"He's such a colourful personality with so many odd aspects to his personality that it's obscuring his Tourette's and making people think that's part of his Tourette's."

'Not representative'

But the TSA said it now thought some good things had come out of Pete's inclusion on the show.

"What it has done is put Tourette's on the map," said a spokeswoman.

I think Pete's inadvertently doing a lot of damage to Tourette's awareness
Nick von Bloss

"Hopefully, people will recognise other people with Tourette's and see they have more in common with a person with Tourette's than they'd realised."

But she said the fact that Pete's tics included involuntary bad language - or coprolalia - had the negative effect of reinforcing a public perception of Tourette's as "the swearing disease".

In fact, coprolalia affects only about 10% of people with Tourette's syndrome.

"It's a serious point. Even now there are GPs saying that if you're not swearing then you have not got Tourette's," she said.

"Overall, our view would be that Big Brother has been helpful and shows someone who's nice and normal has Tourette's.

Even now there are GPs saying that if you're not swearing then you have not got Tourette's
TSA

"Our only reservation is that it may reinforce the mistaken view that coprolalia is a necessary diagnostic criteria."

Tourette Scotland chairperson Janice Mylan, meanwhile, said Pete had been a role model for people with Tourette's.

"Most of the reaction we've had has been positive. People have felt that he's been honest and upfront about his Tourette's and that helps with removing the stigma that's there, especially with youngsters."

A Channel 4 spokeswoman said Pete, who has been a runaway favourite to win the show from early on in the series, had been chosen solely for his personality.

"Pete's attitude to his condition is a really positive one and that's helped to educate and inspire people," she said.

"He's a very positive role model and he's been a great housemate."

Do you think Channel 4 producers have exploited Pete's Tourette's Syndrome or improved the public's understanding of the condition?

Below are some of the responses we received. This debate is now closed

I have a daughter with Tourettes. I believe that Pete from Big Brother has helped the general public to come to terms with Tourette's BUT I am still very concerned about the lack of knowledge there is within the medical profession on this subject and how it is approached by them. If any of you are genuinely concerned please push for more research as this can be quite a disabling condition with many lifestyle restrictions attached to it.
Marion Johnson, Gillingham, Kent

Did Channel 4 exploit Pete, hmmm NO, Pete turned up at the auditions. Has Pete helped undermine the awareness of Tourette's, hmmm NO, he's allowed the audience to see the human being inside. So what has Pete achieved, he's proved that no matter what your situation, if you concentrate on the important things in life then that's all that really matters.
Nigel Bradshaw, Blaydon on Tyne, Tyne and Wear

While Channel Four are obviously were out for the exploitation of Pete, I think the public's exposure to this condition will be beneficial to people with Tourette's because the general public have been made more aware and tolerant of such conditions. Although Roy Hillard feels his presence on this programme will lead to afflicted children being mocked, his implication is that they wouldn't be mocked if Pete hadn't appeared on this show. This is a non sequitur. Children mock anything that is different. A child with Tourette's is going to have a hard childhood. By appearing on this program I feel that Pete has raised public awareness of one of many wonderful variants of humans that exist, and shown the positive sides of creativity and spontaneity that Tourette's people have.
John Ayles, London

If the public were educated about Tourette's it was accidental. The intention on the part of Channel 4 was to fuel mass voyeurism and so boost their ratings - pure and simple. It was an exercise in commercial exploitation and not, as some people seem to think, to promote understanding of Pete's condition. Anyone who thinks otherwise is being naive.
Bian, Manchester

I have 2 daughters with Tourette's who go to boarding school and I can only say that though I hate Big Brother and the whole media circus, in this case it has made my daughters happy as the show has raised awareness of the condition and they have been able explain to other people what living with Tourette's is like. Pete being such a nice chap has only helped this, ie. you can be normal and have Tourette's!
Hilary Wilson, Darmstadt, Germany

I'm not ashamed to say I knew very little about this condition before watching Pete. It's easy to see now, how sufferers refuse treatment to reduce symptoms because they feel they are suppressing part of themselves. As we near the end of the show, I find myself not noticing this affliction at all...a sign of acceptance that comes with familiarity and one that, I'm sure, will be replicated amongst others in the viewing public.
Nick Clark, Nottingham

Exploited? Hardly. When he emerges from the house he will be a celebrity with a small fortune. His swearing and tics will be instantly understood and accepted wherever he goes - which, after a lifetime of bullying and sidelong glances, must be a relief. The only downside is that he's ended up with Nikki.
Barry, Brighton, UK

If anything I think Pete has done nothing wrong towards his cause, despite his mannerisms he has proved to be an immensely likeable and funny character and one that deserves to go further after this show ends. He is a natural compared to what you look at the stuff comedy writers are trying to come up with these days. I hope it works out for Pete too... he is well funny. Mark.
Mark Stevens, Llandudno, Conwy, North Wales

I think it's done a great deal of good. The problem is that the ego can be subconscious, and makes people want to keep to their original viewpoint (think of Bush and the even more pointless war on terror). That those that have said it would be bad are now saying it has done "some good" is a great indication of the genuine good it has clearly done. They just won't admit to the full extent to which they were originally wrong.
Andy, Warrington UK

The main thing that Pete's inclusion in Big Brother achieved was completely undermining the competition. Everyone knows the fickle general public are prone to a sympathy vote. He had it in the bag from the moment he stepped in the door at the expense of more worthy contestants.
Matt, Manchester, UK

Of course channel 4 exploited his condition, that's why he was put into the house. It was that upsetting I could not watch the program, it was disgusting what channel 4 did, to get better ratings. I personally think that the television regulator should have stopped this farce, it was a deliberate attempt to use Tourette's Syndrome to keep the general population amused, it did no favours to the people who have this debilitating problem at all.
Paul, Lurgan, Northern Ireland

I think that Channel 4 has improved the understanding of the condition. I personally did not know that such a sickness exists. After watching Pete, I found out that the people with such condition have Tourette Syndrome and they are not doing strange things with intention.
Hameed, London, UK

I don't think that Channel 4 have exploited Tourette's in any way and I think that they haven't tried to focus on the swearing for more viewers. Pete actually chose to go on the show to raise awareness of Tourette's and I have to say that I think he has done so. Maybe people will think twice before bullying the poor souls that have to live with this debilitating condition. Good on Channel 4 for giving Pete a chance to stand up for all the underdogs out there!
Ellen, Birmingham

All power to Pete's theatrical elbow - Tourette's? - perhaps a smattering- and a timely judged emphasis for the camera's whenever and wherever he considered a "boost" appropriate. Unfortunately Pete has "plasticesed" the syndrome and other sufferers will suffer more as a result.
Geoff, Scotland

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Published: 2006/08/18 03:10:08 GMT

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