This month has been Tourette’s Syndrome awareness month and I worked hard to spread the word and educate as many people as I could, in as many ways as I could!
What is Tourette’s Syndrome?
Tourette’s syndrome is a neurological condition that causes a person to make involuntary sounds and movements called tics. It usually starts during childhood but can also have a late onset in teenagers and adults. Many tics are painful and can result in sufferers being wheelchair bound from tics in their legs, broken teeth from teeth grinding, damaged necks from head throwing and various cuts and bruises from hitting and punching both themselves and other objects.
Another side of Tourette’s is vocal tics. These can be random words, long sentences and sometimes swearing. Unfortunately this has become the focus of the media and is the only part of Tourette’s syndrome that people know. It can often be the brunt of peoples jokes. This is why it is so important to widen people’s awareness – educating about the condition is what our aim is.
‘Turn it Teal for Tourette’s‘
For those struggling with Tourette’s syndrome, it can feel invalidating and upsetting when it is simply made into a comedian’s punchline to be laughed at by those who haven’t been properly educated about what this condition is. This is why I always believe that the best thing that I can do to help myself, and the wider Tourettes community, is to deal with the challenges we face when out and about in public or when meeting people who aren’t aware of the condition is to advocate and educate others. This is why Tourette’s Action (the leading charity that supports the Tourettes community) is asking people to “Turn it Teal for Tourettes” by lighting up landmark buildings or bridges across the UK on the 7th of June for Tourette’s awareness day, to raise vital public awareness and to show solidarity for people with this so often ridiculed disability, like me.
My first task was to join in with the National ‘Turn it Teal for Tourette’s’ campaign run by Tourettes Action.
I approached my school who immediately agreed to help by lighting up the foyer of Cedar’s Hall and The Eavis Hall. Michael Eavis is the founder of the Glastonbury festival and an old school pupil of my school!
Next I approached The Eden Project and St. Michael’s Mount, two iconic landmarks in Cornwall, where I live. Both agreed to support in any way they could.
Eden put out this incredible image on their social media and St Michael’s Mount looked stunning lit up in teal green… just for us in the Tourette’s community.
“I think this is a really interesting and important initiative that the Eden Project is delighted to support.”
Sir Tim Smit KBE
“We were delighted to light up the Mount on Tuesday to support Wilamena’s awareness campaign and Tourettes Action.”
Lady Mary St Levan
I feel very touched and well supported in my quest to spread the word and several families with members who have Tourette’s Syndrome made the journey to watch St Michael’s Mount light up on the evening of June 7th. Even more importantly I reached out the local press to feature the ‘Teal for Tourettes’ initiative as this really helps to raise awareness and to improve the lives of everyone who struggles with the neurological condition.
Advocating in schools
I feel very passionate about educating people about Tourette’s. I believe that the more people know about it, the more understanding and support they can give. Children especially can be quite cruel when someone is different and they don’t understand why. Teaching the children at my school about Tourette’s syndrome certainly helped me with my journey.
So I lead an assembly for the entire junior school where I attend, to teach the younger members of the school community what Tourette’s syndrome is and how it can affect one’s school life. My older sister Martha-Lilly assisted with the presentation.
I did some experiments with the children to see how it felt for them to try not to blink for a minute, and also got them to make certain movements when given a signal to show how difficult it can be not being able to sit still.
Wilamena asked if she could address the Junior School in an assembly as part of Tourette’s Awareness Month. Not only was this a brave thing to do in the first place, but the manner with which she addressed the pupils and delivered her presentation was superb. Opening herself to a Q & A on the topic with 7 – 11 year olds really could have gone in any number of directions, but the thoughtful and sensitive questioning that resulted was testament to her own work. She was similarly outstanding in how she responded to the children. She was both inspirational and a fabulous representative of the school community.”
Junior School Head Teacher
“It’s not what you think”
This is a new motto from Tourette’s action which will hopefully lead people to question more deeply about what TS actually is.
Move for Tourette’s
Move for Tourette’s is an initiative to encourage people to participate in some sort of physical exercise to help raise awareness about Tourette’s syndrome, and at the same time offering the opportunity, if desired, to raise some money for Tourettes action. I will be organising for the young members of the school I attend to do a lap of the school grounds. As a result of this year’s Tourette’s Awareness Month the junior school will also be making Tourette’s Action their charity of choice for their summer fete!
I have also approached senior management at my school to help in other ways. The school are going to have a mufti day in the senior school to raise some money. Hopefully everyone will wear something green/teal to show their support for Tourettes and the community and again it helps to get people talking and learning about Tourettes.
All of these things, lighting up national monuments, having the support of Eden the largest captive rainforest on earth, the attention of children in the junior school, my school auditorium the Eavis Hall lit teal, must days and sponsored walks although small all help to bring up the subject of Tourettes in a positive and inclusive way and create positive discussions on the topic. This can only be a good thing!
See you soon!
Wilamena xx 🙂