Meeting Someone Who's Not Quite Me

Written by S. Bowyer

(Warning: Contains strong profanity and racial slurs due to the nature of Tourettes Syndrome)

     Tourettes is a condition that is recognised by uncontrollable repetative physical and verbal reactions called "tics." While not an overly rare condition, it being estimated one in 2,000 people may be affected (4x more boys than girls), society often has trouble knowing how to respond when someone yells nearby for no reason, or constantly blinks, nods their head or shuffles their shoulders.  However, what about when one Tourettes person interacts with others? The results surprised me.

      This documentary follows several UK teenagers with Tourettes, all at different severities and having different types of tics. We are first introduced to them singularly with their parents, to get an insight into how Tourettes affects their normal lives, before we watch them travel to Tourettes camp in America. The project was formed by a US sufferer of Tourettes, Scott Loeff, 20 years ago, who wanted to give a social opportunity to young people to assist them in their confidence. Each year they have a group of children stay at YMCA Camp Duncan to learn and find comfort in having Tourettes. This is of great importance, as often Tourettes symptoms are worse in teenage years, sometimes dampening off during adulthood, or remaining the same.

     Here is a brief video about the camp and some of the people who have attended:

 

 

      The documentary, Teenage Tourettes Camp, follows 5 UK teenagers who are about to meet and interact at Camp Duncan. 

      There's Jessica who also has Asperger's (1 in 6 people with Tourettes also have Asperger's), who is knowing for yelling "bomb" in airports, using the N word, and uses descriptive words around overweight people and gay people. Jessica has strong vocal tics as well as physical tics such as giving people the finger randomly. The most dangerous of her tics is her obsession with opening car doors while cars are moving. Jessica stated in the documentary that smoking cigarettes helped her tics, but the founder refused her because the camp was a non-smoking environment.

     Jen is predominantly physical tics and facial distortions, but is somewhat more sensitive than Jessica because she has been bullied for the 11 years she's had symptoms. She finds that singing can help her tics subside.

     Sam is a young man who uses the N word as well as other expletives, and considers himself the babe-magnet. 

     Ben has mostly physical symptoms such as sharp breaths, shrugging, sniffing, and random phrases likes "wizzles."

    Michelle is the least-experienced in dealing with Tourettes, only having symptoms in later childhood, and only diagnosed a few years before the taping of the documentary. Her tics are mostly always physical, not verbal.

 

From left: Michelle, Jen, Jessica, Ben and Sam

 

     When the teenagers first arrive, it seems like they are going to fit in nicely, until they begin to see each others' tics. Probably the most interesting perspective of this film is to learn that someone with Tourettes does not automatically understand another. A lot of the teenagers at the camp (5 British and 25 Americans teenagers) found the tics of others confronting.

      "It's good to be with people that have Tourettes. . . because I never met anyone. First it's really weird because I've never met anyone with it. It really did seem weird thinking, is that me? Is that what I sound like?" Sam admits. 

     Attending teenagers who only experienced physical tics found the vocal tics of others shocking. At one point the whole group bursts into laughter when Kyle, 15, yells "Jen gives head." Some of them had never experienced such a vocal tic before. However, Jen becomes upset by the outburst, feeling alienated and targeted. Although Jen has not spoken about any sexuality or shown any interest in boys, she feels victimised and bursts into tears, for the others to console her. She also found Jessica's tic of "fatty" demeaning because it was said while Jessica focused her eyes on her. Later on in the documentary, Jen says she thinks Jessica was lying and the tic was faked to upset her. It's assumed that Jen reacts badly because of a bully-filled childhood that has made her uncomfortable about her Tourettes.

      The arguments between Jessica and Jen later spiral out of control. One can't help but wonder which outbursts are tics and which aren't, when both girls have an all-out brawl when a male camper becomes involved. 

     The documentary was very enlightening, and really gave a new perspective of the social world of someone with Tourettes, even around those who have the condition too. I think what fascinated me the most was that verbal tics are not always just "random phrases", as is so often assumed, but actual pieces of information the brain is processing, sometimes stated in the incorrect terms. They might be racial slurs because the brain is registering someone's ethnicity, it might be "fatty" because the person has noticed their friend is overweight, or in Sam's case, it could be "Twin Towers" because that's what he regards as important to New York. But if other Tourettes sufferers are suspicious which are tics and which are not, how does a teenger with this condition get belief and support in a social environment where there are not people directly experiencing what a tic feels like?

 

     In a later interview, Jessica was asked how the general public react to her use of racial slurs. 

     "So yeah. Sorry. ****!" said Jessica. "I'm not racist, but I say the worst possible thing that comes into my head."

      "I've got loads and loads of black friends. When I say it, I won't make a reaction, I'll just act normal. If somebody comes up to me and says, 'What are you saying?' I'll say, 'Oh sorry, I've got Tourette syndrome,' and 99% of the people who are black will say, 'Oh, I'm sorry.' Even the baddest people, like the girls who are all ghetto and who will smack you and they just go, 'Safe, safe, that's fine', and they're normally really good about it."

      Since the documentary's release, The Guardian newspaper spoke to Jessica about the footage of her. The reporter noticed she was sucking her thumb, which her mother explains she now uses to help control her tics.

      "Good television is what they wanted, so they made me look like the baddie. They did 90 hours of filming and they concentrated on the one fight," Jessica says.

      "We had a screening a while ago, and Jessica cried her eyes out at the end," Alan, her father, said. "She said, 'Everybody's going to hate me from that, they're going to think I'm horrible.'"

      The documentary was the project of ITV. A publicist stated, ""We feel that the film is a fair and true representation of what happened at the camp. We feel that the programme is sensitive to all parties involved and to the central issues of Tourette's. We also strongly believe that it tells the story of their trip in an open and impartial way. It was certainly not edited consciously to portray any of the teens in a particular way."

 

     In an interesting twist, Jessica was asked if she was given a magic wand, would she want to cure her Tourettes. She said no, which surprised her mother present for the interview. 

     "Because it's me, and I want it to go naturally. I don't know. You don't know what it's like," she explains. "If somebody said to me you've got one wish, I'd say to not have Tourette's for a week and after that decide then. But it's not going to happen, is it?"

     With that in mind, I thought back to Bianca, an Australian young woman, featured on 60 Minutes some years ago. She was given a revolutionary Deep Brain Stimulator via surgery that seemingly sent her tics into remission enough that she could live a somewhat more-normal life, that could become a popular treatment for Tourettes as it is developed.

 

 

     Teenage Tourettes Camp can be found on Youtube and other online video providers. Certainly worth a watch, if you can tolerate strong language and can understand the racial slurs are not used by choice.

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