HELL has never been afraid to embrace confrontational subjects and has faced its fair share of furiously shaking heads and wagging fingers as a result. So getting involved with Camp Twitch – New Zealand’s biggest gathering of Tourette’s sufferers – wasn’t something the company shied away from.
But facing up to involuntary tics is one thing – hearing stories of social isolation from those dealing with the disorder was an emotional hit the HELL team wasn’t prepared for.
“Those kids, and their parents, are just amazing,” said HELL director and founder Callum Davies. “Hearing their stories was incredible; there wasn’t a dry eye in the whole camp!
“It was one of the most moving experiences of my life; it opened my eyes to just how tough it is growing up with Tourette’s. At the same time, it was really cool to see a bunch of kids just being themselves and not having to worry about being singled out or judged because of their tics.”
With one of HELL’s caravans in tow – a pizza kitchen on wheels – HELL founders Callum Davies and Stuart McMullin, marketing manager Jason Buckley, and Napier franchisee Richard Stevenson visited the camp in Rotorua to dish out some dough-throwing lessons and help attendees create their own masterpieces.
Camp Twitch organiser Robyn Twemlow said: “It’s great to have a business like HELL on board helping to raise the profile of Tourette’s. The guys were so respectful of everyone on camp – they just fronted up and took people at face value without making a big deal about their various tics, even when some of those were uncontrollable hitting and spitting.”
Robyn, whose daughter Analise has the disorder, is also the founder of the Tourette’s Association (TANZ), which started as a way of providing support to sufferers and their families.
Defying the odds
This year, the four-day Camp Twitch was held in Rotorua. With zero government funding TANZ has defied the odds to become the country’s leading authority on the neurological disorder – it’s estimated that around 1 in 200 Kiwis carry the gene.
Robyn said in some cases the condition is so mild it’s undetectable, but for those with more obvious symptoms it can be incredibly isolating – “there aren’t many who get invited to birthday parties”.
“It’s something that immediately and obviously sets them apart. Most of the 50 or so parents at camp told us their kids were bullied,” she said. “Camp Twitch gives them an opportunity to spend time with people like themselves. It’s funny watching them meet, as they all start comparing their tics!
“The camp also creates a valuable support network for them once they’ve left, as they make friends for life.”
A lifetime lack of support
Robyn said another challenge for young people with Tourette’s is a lack of formal classroom support.
“In terms of education, it feels like we are where dyslexia was 15 years ago. Because of the isolation they often feel, they can be reluctant to participate in classroom discussions or have the confidence to ask questions.”
Adults with severely debilitating physical tics are often unable to work, however access to disability support services is non-existent because the Ministry of Health does not regard Tourette’s as a disability.
HELL general manager Ben Cumming said he was shocked to learn about the lack of support available to those with Tourette’s, which became one of the key drivers for HELL to get involved.
“TANZ is an underdog, which is how HELL started out 20 years ago. We’ve since developed a real passion for backing underdog causes and felt that this is a great one to get behind.
“We want to help TANZ in its mission to raise awareness and increase tolerance of what can be – but need not be – a really cruel disorder. We plan to work together in the future and already have a number of ideas of how we might be able to help.”
See how Satan’s Little Helper has supported other youth ‘going through hell’.