THE Borderer who has become one of the best-known faces representing people with Tourette syndrome in the UK wants to meet Prime Minister David Cameron after he said facing shadow chancellor Ed Balls in Parliament was “like having someone with Tourette’s sitting opposite you”.
Mr Cameron made his comment, concerning heckling by Labour’s front bench bruiser Mr Balls, in an interview with the Sunday Telegraph. His remarks sparked a major row with disability campaigners and Mr Cameron later apologised, during a television interview with the BBC’s Andrew Marr, for what he termed his “off-the-cuff” remark.
Tourette’s syndrome is a neurological disorder characterised by tics – involuntary, rapid, sudden movements that occur repeatedly. These can be accompanied by the uncontrollable uttering of obscene remarks and swearing, known as coprolalia.
This latter facet of the condition affects only one in five Tourette’s sufferers, including John Davidson, of Galashiels. Mr Davidson, first came to public prominence British public’s screen in 1989, aged just 15, in the BBC documentary John’s Not Mad, followed by The Boy Can’t Help It! in 2002 and in various other documentaries over the years.
A caretaker and youth worker in Galashiels for 15 years, Mr Davidson has also been on the committee of Tourette Scotland and worked as a volunteer support worker for the organisation for many years.
He has delivered workshops and presentations on living with Tourette’s to various groups and now works with a number of organisations and bodies to further greater understanding of those with Tourette’s.
After the furore over Mr Cameron’s comment, Mr Davidson and fellow members of the British Tourette’s community have written letters to No 10 Downing Street to invite the prime minister to meet them to see the difficulties they face in trying to live normal lives.
Mr Davidson says the remark by Mr Cameron shows a huge lack of understanding about Tourette syndrome still exists in the UK. “For the prime minister to make a comment like that shows not only a lack of understanding about this condition but also a lack of empathy with people with Tourette’s,” he said.
“As for his half-hearted apology on the Andrew Marr telelvision show – which I watched – I thought it was appalling. Calling it an off-the-cuff remark is hard to believe, when it was made during an interview with a major national newspaper. Many people with Tourette’s will have found the comment extremely denigrating.”
Mr Davidson said that, after Mr Cameron’s comments, he spent hours reading emails and answering phonecalls from distressed people with Tourette’s from around the country.
“One woman told me her little boy was frightened to go to school the next day, because he has Tourette’s and he thought that if the prime minister could say such things, then all his friends at school would feel it OK to make fun of him too.
“So while Mr Cameron may think it was nothing but a throw-away quip, it has caused great distress to many people in this country. “There are 300,000 people with Tourette’s in the UK. When you add in their families, that means there are some 1.6million people either with Tourette’s or with a family member who has the condition – that’s a lot of votes to risk losing by an off-the-cuff remark.
“Some people might think it funny and making a mountain out of a molehill, but those with Tourette’s and their families will find it very disheartening that the leader of this country – a man who sadly lost a disabled son – would make such a comment.
“It will affect a great many children with Tourette’s and young people with the condition struggling to develop lives of their own. Sadly, I’d have to say it shows that Mr Cameron just doesn’t get Tourette’s at all and people living with this condition deserve better from their prime minister.”
Mr Davidson, who says there are about 60 people with Tourette’s in the Borders, believes it is time to move beyond the row and capitalise on the publicity it has generated.
“This has thrust Tourette’s back into the limelight. But we need to put the row behind us and move on in a constructive fashion. Many in the Tourette’s community have written letters to No 10 Downing Street asking for an assurance such insensitive remarks will not happen again.
“We have invited Mr Cameron to meet people with Tourette’s to let him see for himself the difficulties we face in our day-to-day lives.”