Ambassador for Tourettes, John Davidson in new BBC Documentary in May 2009
John Davidson first came to the British public's screen in 1989, aged 15, in the BBC documentary "John's Not Mad" (available in DVD - see publications), followed by " The Boy Can't Help It!" in 2002 and in various other documentaries over the years.
He (along with our good friend Greg Storey - now aged 15) is now featuring in a new documentary "Tourettes, I Swear I Can't Help It" which is being shown on BBC1 at 9pm on Thursday 28th May.
John (who has full blown Tourette Syndrome (TS) including Coprolalia (involuntary inappropriate utterances such as swear words) is now aged 37. He has worked as a caretaker and youth worker in Galashiels for the last 18 years. He has also been both on the committee of Tourette Scotland and worked as a volunteer support worker for them for a number of years. He delivers workshops and presentations on living with TS to various audiences. These can be from people with TS to audiences including professionals across the board. This includes presentations and workshops at Tourette Scotland in 2006 and the last Mindroom www.mindroom.org which had audiences from across the globe.
John is a regular Peter Pan, with an endearing personality, he has proven to be a real inspiration to not just the young members of Tourette Scotland but to all affected.
John very kindly agreed to being interviewed by us following this latest venture.
Tell me about your experience working with a film crew again.
It was interesting but also very tiring and emotional. This might be to do with my age now but I felt that the time was right. The crew were very understanding and I was a bit of a challenge for them I think as I can talk for Britain! They had obviously done their research and I enjoyed the experience as I do enjoy being in front of the camera and spreading the word about TS.
Why do you think it is so important to take part in documentaries?
I feel that it is just so important to "keep the message about TS out there". And remind people that TS exists and to educate about how TS can affect people. It is a great way to raise awareness especially for those who either do not have a diagnosis or people who know but are struggling to cope.
What do you find most difficult with how your TS affects you?
I find that it is the OCD (Obsessive Compulsive Disorder) part of the TS most difficult. The problem is that sometimes an OCD thought can develop into a vocal tic. So it's on the mind and then out the mouth even if it is something I don't believe or mean anything by it. The worst for me is when the tics are sexual obscenities or sexual swear words.
What are the positives?
The way I look at it is that I have TS for a reason. I have a chance to articulate and explain what I live with and I am able to do this in an honest and personal way. TS has made me who I am - it is not a seperate part of my personality. It has also enabled me to make lots of friends; I have learnt a lot about TS and other conditions from many others too. I think I am a more understanding and open minded person and personally like to talk and share my experiences with people to hopefully help them.
What do you feel is the most important part of your involvement with Tourette Scotland?
Raising awareness is definately a key issue for me and hopefully I help with this by being an ambassador of the condition and being in the public view. Another really important role for me is in bringing people together, to feel they are not on their own, that they get a chance to talk openly and then people can learn from each other how to live and cope with having and living with TS. It helps so much being given the opportunity to share the torment, the heartache and upset of living with TS but also to looking for ways to deal with it in a non clinical way.
Any particular points you would like to highlight about TS?
Yes. I would like to stop this whole myth around people calling TS the "swearing disease". I guess that because this part of TS is taboo and captures the public's attention then this has been highlighted by the media in the past.
We know that only 1 in 5 have the Coprolalia (involuntary swearing/inappropriate words) and that indeed you only have to have multiple motor (bodily) tics and one vocal tic to fit the criteria for TS but still this is what people associate TS with. TS is so much more than this and can be from mild to severe. For me - it is the swearing that is the most difficult but it affects everyone differently. I have noticed that for me I am less vocal when I am on my own in my home and that my motor tics become worse. For example shoulder shrugs, fidgety movements, having to re-do housework until it feels right etc.
Tourette Scotland would like to say a huge thank you to John, Greg, Dot, Chopper (and any others who feature), all at Prospect Pictures and the BBC for all being part of raising awareness about Tourette Syndrome. You are all stars!!!!
Also see:
http://news.bbc.co.uk/1/hi/magazine/8070740.stm