John Davidson recognised with MBE

Live Borders employee John Davidson was recently announced on the New Year’s honours list as a recipient of an MBE (Member Of The Most Excellent Order Of The British Empire).

The announcement was made public on 28 December 2018 and comes to John after close to three decades of raising awareness of Tourette Syndrome.

John says that he is still coming to terms with being recognised with such a prestigious award:

“It was the beginning of November I got this letter through the door from Her Majesty and I wondered what I had done. I read it and was gobsmacked,” John said.

“It was around 10 people who had nominated me for the award so I’m still overwhelmed by the whole thing. I’m proud of the fact that I’m being recognised for what I have done for the Tourette’s community locally and nationally.”

John is just one of approximately 400,000 people diagnosed with Tourette’s in the UK – he is well known for featuring in six documentaries and also numerous television programmes over the last 30 years.

John first featured on the BBC’s documentary ‘John’s Not Mad’ back in 1989.

“I’ve done quite a lot of stuff but when it’s spread over such a long period you tend to forget how much you’re doing,” he said.

“But if you put everything together over 30 years, there has been an immense amount of work done but I’ve thoroughly enjoyed every minute of it. Since getting the MBE, I look back and feel proud of what I have achieved. It does inspire me to keep going and I’ll be doing this until the day I drop.

“I’ve not been doing this as a job – I’ve been doing it as a human being that thinks that’s the way life should be – helping each other and passing on information because life is too short.”

John started showing symptoms of Tourette’s at the age of 10, but wasn’t diagnosed until he was closer to 14. He admitted to struggling with learning how to cope with the disease throughout his teenage years at a time when there was very little support out there for people diagnosed:

“It was difficult in the beginning, although people knew what Tourette’s was and that I had the condition, people didn’t know what to expect,” he says.

“I have an easy going and bubbly personality but I went through a phase of being quite angry that nobody wanted to understand the condition. I started getting in fights with people and beating people up thinking that by doing that people wouldn’t mock me. I very quickly realised that that wasn’t the way things needed to be done. People would laugh, people would snigger, kids would say horrible things and I have been assaulted. I had to take that on the chin and think that maybe they didn’t know, so it’s up to me to tell them exactly what it’s like.”

The public awareness and acceptance of Tourette’s has significantly shifted since John began his work back in the late 1980s:

“Letting people know there is support out there and that your life doesn’t end just because you have Tourette’s. You just have to get on with it. Since the MBE it has given it some sort of prominence in the public because nobody else has ever been given an MBE for Tourette’s. It gives us confidence that the ‘establishment’ is recognising that Tourette’s exists.”

Commonly, but wrongly  referred to as the ‘Swearing Disease’ all people diagnosed with Tourette’s are different, showing different signs and symptoms. Like Autism, Tourette’s has a large spectrum.

In fact, only around 10% of sufferers have the swearing part of the condition, known as Corprolalia.

John said: “Every person with Tourette’s lives with it differently. It’s about finding who you are and how you can get on with life and making little changes to your environment. I’ve proved to the nation that just because I have a condition that most people consider socially debilitating, I still come to work and I work with all parts of society. By putting myself out there, it spreads the word to others that it can be done and that I’m not just ‘John with Tourette’s’ that tics and shouts.”

Over the years John has had contact with thousands of Tourette’s sufferers from all over the UK and the rest of the world. As the Caretaker of the Langlee Community Centre, John regularly hosts Tourette’s activity weekend at the Centre, where sufferers and their loved ones can come and talk and importantly, feel a part of the majority rather than the minority.

“When you get a heap of ticcers coming together, it’s quite noisy and quite funny but the benefit they get from that is phenomenal,” he said.

John has been working at the Langlee Community Centre for 28 years.

“In the early days, I was here during the day and then back in the evenings helping out with various groups, the Centre became part of my life and I got involved with loads of different stuff,” John said.

“For a lot of people, the Centre is the centre of the community. It’s been an ideal place to get into work and spread the word about Tourette’s.”

John will be presented with his MBE on Tuesday, 2 July at Edinburgh’s Holyrood Palace by a member of the Royal Family.