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Speaking Out
"Shag it!" How do you respond? Blush, belt the person who shouted it or laugh out loud. "F***!" It happens again; the shock lessens, but it's still pretty difficult to take. However, if hearing these outbursts is uncomfortable, just think how the person who shouted it feels. His name is John and he's got Tourette's syndrome. "People say to me, 'I heard you in the town the other day, John.' That's fine by me because people do hear me before they see me. That's part of life; there's not a lot I can do to change it."

John Davidson - John's not MadJohn Davidson was talked about in playgrounds, on buses and around work canteens for months when, in 1989, a documentary was broadcast about how this 15-year-old boy from Galashiels was living with his very public, physical condition. Colleagues discussed their dismay at his barking and grunting and schoolchildren recounted the many expletives Davidson shouted out involuntarily. The Q.E.D
documentary, John's Not Mad, became for the I980s what Michael Apted's 7 Up did for the 60s. Davidson was diagnosed with the most severe form of the complex neurological disorder known as Tourette's syndrome (TS) in his early teens. The documentary of his experiences left a lasting impression - partly attributable to the severity of his condition but mostly because of John himself, an endearing, lonely, 15-year-old facing the enormous task of struggling to be understood. The film documents his daily routine: trying to cope with a visit to his local library, spitting fish and chips at his mum over the dinner table and being left out of the classroom as a result of the condition that makes him tic, shout and swear involuntarily.

John was the first boy in Britain with TS to be filmed, giving the public its first insight into the disorder and marking a significant watershed in raising awareness. At the time the film was made John's teachers handled his behaviour by taking him out of mainstream education and placing him amongst boys with learning difficulties. Even John's grandmother believed that he was possessed and should pray for forgiveness to relieve his symptoms. "I suffered from a full nervous breakdown when I was 14 before I was diagnosed with TS," he explains. "I was admitted to hospital for around 14 weeks where GPs and paediatricians started to believe what my mum was telling them about my behaviour, but they had no idea what it was. By chance there was another doctor there who was going through his training who recognized some of my symptoms and asked my doctors if I had TS. "At the time, their response was, 'pardon?'

Then, knowledge of the syndrome was virtually non-existent. There is greater awareness of the condition now and I'm glad I've been a part of that." Indeed, John has done more than have a film made about his condition, he continues to champion the charity Tourette Scotland and is closely involved in workshops and forums that strive to keep TS in the public eye. Today, he is giving an interview; a workaday task in ordinary circumstances but an incredible feat when you consider the nature of TS. He seems embarrassed by some of his outbursts but he doesn't stop to dwell on them because that tends to lead to further shouts and more tics. "The way I deal with it is to keep myself busy," he says. "Like right now, I'm talking and I'm keeping my brain busy by thinking about what we are talking about. My brain is active, I'm concentrating and I'm focused on something. It's then that I'm less likely to tic or shout."

His explanation of the condition is meticulous and, while the documentary makes for difficult viewing at times - John's isolation at school and learning that his father cannot bear to sit at the dinner table with him - his straight forward and sympathetic understanding of the difficulties others have in dealing with him remains inspiring. "Doing the documentaries has actually helped me a great deal in the sense that I'm more self-confident now. At that time in my
life, it gave me a reason to carry on. I knew it was something that not a lot of people knew about. Deep down, it was something I wanted to do. I knew this would be the perfect chance to let society know what TS is all about," he explains. But despite the responses John faced only 15 years ago, TS was not, even then, a new condition. The first reported case appeared in medical records in 1825 when French neurologist Dr George Gilles de la Tourette described the involuntary tics and vocalisations of one of his patients as TS.

Janice Mylan, chairperson at Tourette Scotland, is acutely aware of the exposure Davidson has given to the condition and the impact that the documentaries had on the nation. "Very little happened in Scotland until the documentary but the problem with the documentary was that people then started to refer to TS as 'the swearing disease'," says Mylan, a common misconception that John too is eager to dismiss. "That's not the only aspect to TS," she adds. "It's just that John's case was full-blown TS, but only about 10-15 per cent of sufferers have coprolalia, the uncontrolled, often obsessive use of obscene or sexual language.

What's important to state is that's not the only or even the main symptom of TS. That drawback aside, Johns Not Mad was a slice of television history that has changed the course of John's life. "I just wanted local people to know I wasn't mad," he says. "That was my initial reason for doing the documentary. I wanted them to know that even though I was behaving like this, I was an alright person. "So many people would cross the road, thinking I was dangerous or worried about what I might do next. At the time I just wanted to let people know that I had an actual medical condition and it doesn't mean I'm going to harm anybody; it's totally involuntary.

John Davidson - John's not Mad"About two or three weeks after the documentary, I started getting loads of mail, sack-loads. The postman must have gotten sick of it because we were getting so much every morning! It was all letters and cards from well-wishers. People were just writing John Davidson, TV documentary,
Galashiels, Scotland' on the envelopes but Gala being such a small community, the postman knew exactly where these letters were going. "It gave me a huge amount of encouragement to know that so many people out there watched the documentary and they now realise what TS is. So, as well as helping me, it helped other people understand about the condition."

Despite wider knowledge of the disorder and a greater general awareness in Scotland, there is still much work required to continue to raise the profile of the condition. Statistics are scarce, though it is generally thought that
one in 100 people is affected by TS or one or more of the associated disorders. Research tends to focus on the associated behavioural and neurological disorders including obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), Asperger syndrome and other autistic spectrum disorders. Tourette Scotland marks its 10th anniversary this year; however the charity remains in relative infancy with a new committee forming in 1999 and their first premises opening a mere 18 months ago. Mylan, Davidson and the other 10 committee members have been working on amendments to the proposed Anti-Social Behaviour Bill (ASBB), legislation they feel fails to address the needs of TS sufferers. Unfortunately, their application for funding from the Scottish Executive was rejected but they continue to work unpaid to raise awareness of the disorder. Their hope is that the DVD release will bring the condition
back on to the agenda and back into the minds of the public.

John never imagined the scale of the response his documentary would receive, nor that it would have been this positive. "After watching it, I just wanted to go out into the street to see if anyone was there and find out what they thought. I remember looking out of my bedroom window, wondering about it."

'F*** off John', as he's widely known in his hometown, now works as a caretaker at his local community centre. He is also a part time youth worker and takes groups of kids for various activities. He has his own flat and is happy that he got the chance to 'prove himself to society' by making 2002's follow up programme. "Mum's always been very supportive," he says. "She was a god send before diagnosis and at the time of the first documentary. As time went on, I was getting more confident and I was starting to change into a person that I wanted to be. "I'd relied on other people so much and for so long, I had this overwhelming need to prove to people that despite having TS, I could still be independent. Over time, my relationship with my mum became a bit distant and I think at the time we both found that quite difficult to deal with. I think we both had to do it, though.

John Davidson - John's not Mad"I had friends who helped me - people who still look out for me. My parents ended up splitting up and my mum moved away, so my friends Dorothy and Chris became like foster parents to me. Through them, I was able to start rebuilding my life. They made me feel more comfortable. Since the documentary, my brothers and sisters have a better
understanding of the condition. We have normal sibling relationships now. My dad still lives in the town but we've never been very close. Everything, in a way, has kind of
worked out for us all."

To the ordinary person on the street, it can be difficult to see how Davidson can be so upbeat about his situation. He has been assaulted on several occasions; one time when he was taking his dog for a walk he was hit over the head repeatedly by someone who didn't respond well when he shouted 'fuck'.
He explained he suffered from TS but felt a crowbar hit the back of his head. Now, he believes as a result of this trauma he is compelled to tap himself on the forehead every time he uses a hammer or screwdriver. "I believe that tic, where I have to tap my head with the hammer, is a manifestation of the assault with the crowbar," he says. "It always seems to be the most extreme, most dangerous act that becomes a tic because you worry so much about it. "It's the same with the swearing; you know that it is wrong or the most socially unacceptable thing to do or say but that just makes the urge stronger."

Taking his youth group for football he shouts "paedophile" or "wee dick" between coaching instructions because he knows it's the worst possible thing he can say. The children around him don't flinch, clear about what John's condition means in terms of his behaviour and not in the least phased by his spontaneous outbursts. Being comfortable seems to be what it's all about. Not John's comfort, mind you, but ours. He's doing fine with his condition, in fact he reckons he's beaten it and with the years that pass, it continues to improve. It's
the public who aren't comfortable with it, the public who assault him and mimic him, the public who can't cope with TS because John certainly can. "Some of the youngsters at the youth club say to me, 'we never hear you complaining about your TS?' and I tell them, what's the point in being negative about it I've got it and it's not going to go away over night," he says. "There's not a lot anyone else can do about it, other than learning how to live with it."

John's Not Mad is released by Fabulous Films on Feb 9. £1 from each sale will be donated to Tourette Scotland. Contact Tourette Scotland, 50 Princes Street, Perth, PH2 8LJ, phone 01738 622 008 or email info@tourettescotland.org

Written by Catherine Coyle - appeared in The Big Issue in Scotland - February 5 - 11, 2004.

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