Tourette Syndrome Foundation of Canada's @Random features stories of families and individuals affected by Tourette Syndrome in Canada, Norway and the United States. In this interview, Project Chair Kirk O'Brien will tell us more about this very important documentary.
Cendrine Marrouat: Hello Kirk, thank you very much for answering my questions. @Random took two years to be completed. Was there a particular event that triggered the project?
Kirk O'Brien: Two years ago, the Tourette Syndrome Foundation of Canada (TSFC) took a hard look at how we were progressing towards our Vision that “all people affected by Tourette Syndrome will lead quality lives as accepted and valued members in an informed, tolerant society.”
We decided to get proactive and tell the true story of life with TS. We needed to move the mountain of awareness and embed a different view of TS in society - one without the Hollywood jokes and stigma. We knew that every person and family copes with TS differently, but the public only sees one version. So, in partnership with Saatchi and Saatchi, we agreed it was impossible to articulate the disorder without telling as many different true stories as possible. Thus the @Random project was created.
CM: The documentary comprises of more than 24 short films. How did you choose the families and individuals who appear in them?
KO: Working with Brian Sheppard and Helen Pak at Saatchi and Sattchi Canada, the TSFC approached individuals and families living with TS and known to our organization. With their permission, we connected them with film producers interested in making short documentaries about life with Tourette. Cisco Systems donated a dozen Flip Cameras for individuals and families to produce their own films, and Saatchi and Saatchi, in partnership with professionals, cut and edited these films. They also found some existing films from Canada, the U.S. and U.K. Thus many different stories and films were collected.
CM: Viewers never see the same films, a process that mimics the unpredictable nature of TS. Would you tell us a little more about that?
KO: With TS, motor and verbal ‘Tics’ (uncontrolled movements and sounds or utterances) are an exhausting and socially challenging part of everyday life for children and adults affected by the disorder. A comparison of a ‘Tic’ is often made with a hiccup or sneeze, you can feel it coming and there’s little you can do to stop or contain it…you just have to do it and it’s not your fault. To further complicate their lives, TS is often accompanied by other neurological disorders such as ADHD, OCD or Anxiety.
By arranging the short films in a random, unpredictable order, the viewing experience is different for everyone who sees it, unpredictable and a perfect metaphor for the variability of living with Tourette.
CM: How has @Random been received by Canadian viewers so far? What about other countries?
KO: We have been overwhelmed by the response of viewers in Canada and abroad. We are receiving feedback directly by phone and e-mail, through social media and from other Tourette organizations all talking about the positive and sometimes quite emotional reaction to @Random. This project has already been shared with some organizations such as police for training and awareness.
CM: Are there plans for @Random 2?
KO: There are already other unique and personal films underway and we are being contacted by individuals and families who also wish to tell their Tourette story. Confidence and a stronger sense of unity is growing and we plan to launch another wave of films at the National TSFC Conference in Ottawa, October 20-22.
We expect @Random will continue growing as we work towards our vision that all people who have Tourette Syndrome will lead quality lives as accepted and valued members of an informed, tolerant society.
@Random is also quickly becoming an important part of who we are, both as an organization and as a common expression that we all understand of our TS Family.
CM: How can people help spread the word about @Random and the work of the Tourette Syndrome Foundation of Canada?
KO: We encourage people to share the link www.atrandom.ca with their friends, families, co-workers, employers, educators, clinicians, government agencies, like-minded organizations and local media.
Social media is an amazing, evolving way to communicate and word of the project is spreading quickly as @Random goes viral and reaches out across Canada and around the world.
More information on Tourette Syndrome is available at www.tourette.ca or by calling the TSFC at 1-800-361-3120.
CM: Thank you again for answering my questions!
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Cendrine Marrouat is a freelance writer, reviewer, blogger and author living in Canada. Official website: http://www.cendrinemarrouat.com
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