by Richard Morgan
THE most famous face of Tourette’s has criticised the prime minister after comments he made during an interview with the Sunday Telegraph.
John Davidson of Galashiels, said that David Cameron’s remark “has caused great distress to many people in the country”.
Mr Cameron compared facingthe shadow councillor, Ed Balls, in Parliament to: “like having someone with Tourette’s sitting opposite you.”
He later apologised during a BBC interview, calling it “an off-the-cuff remark.”
However, Mr Davidson called this apology “half-hearted.” He said: “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 denigrating.”
Tourette’s syndrome is a neurological disorder which causes tics – the involuntary movements that can happen repeatedly. They can also be accompanied by uncontrollable swearing, known as coprolalia, which Mr Davidson suffers from.
In the UK, 1.6 million families are affected by the condition, which he described as “a lot of votes to risk losing by an off-the-cuff remark.”
Mr Davidson appeared in the BBC documentary ‘John’s Not Mad,’ in 1989. This was followed by ‘The Boy Can’t Help It!’ in 2002 and a follow up documentary in 2009.
The 1989 documentary first brought the condition to the public light. Millions viewed as he tried to cope with his form of Tourette’s.
Mr Davidson was followed in his daily life to document how the condition affected him. Even simple activities such as shopping with his mother became a difficult task as people would stare in shock at his tics.
It was rated as one of the 50 top documentaries by the public in 2005.
Mr Davidson describes the moment before a tic, explaining he can feel it coming: “I get this pressure in my chest and until I release that tick, those feelings do not subside”. He also compares it to an individual sneezing: “Next time you need to sneeze, try and hold it in. That’s what it feels like.”
However, these documentaries have not achieved the intended purpose. Tourette’s is seen by many as a condition to laugh at. The internet has thousands of videos from sufferers attempting to sing or recording their tics for the pleasure of the world. Mr Davidson himself states: “Ask anybody what is the funniest illness or condition, most will answer with Tourette’s”.
He has also been on the committee of Tourette Scotland which did not exist until 1994, held workshops and delivered presentations on living with the condition in the hope to give further understanding to sufferers.
Now, Mr Davidson’s next aim is to meet the prime minister and, along with fellow members of the British Tourette’s community, has sent letters to Downing Street inviting David Cameron to see the difficulties they face in everyday life.
Mr Davidson said the remark shows the prime minister’s lack of knowledge on the condition: “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.”
Following the comment, Mr Davidson said he spent hours dealing with phonecalls and emails from people around the country who were distressed. He also said that one woman explained her child was afraid to go to school as he thought that if the prime minister could say these things, so could his friends.
According to Mr Davidson, children and young people are most affected by Mr Cameron’s remarks as they struggle to come to terms with the condition and develop lives of their own. He said: “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”.
However, Mr Davidson has seen the positive side of the media coverage, saying: “This has thrust Tourette’s back into the limelight.”
Mr Davidson, who says there are around 60 Tourette’s sufferers in the Borders, but he wants the row to be forgotten and the publicity for the condition maximised.