The 31-year-old from Peckham, south London, took on the alter-ego of Touretteshero after a humiliating encounter with a public employee at a time when she desperately needed help, the Sun
According to The Independent
, Thom and other passengers were forced to leave a train early due to flooding in the station. When Thom asked a member of staff the best way to continue to her destination, she braced herself for the negative reaction to her tics, she was used to them. And he didn't disappoint: the station worker "turned his back on her," the newspaper said.
But she decided to go a step further with the worker and explain that her outbursts weren't meant for him, that she had Tourette Syndrome. It didn't help. His response shocked her. "I'm not giving you any fucking information," he said.
Her pass also failed to work at the exit barrier. Again, he refused to help her so she was stranded. Left feeling helpless and humiliated, she ended up taking a taxi home.
"I can understand that if you've not met someone with Tourette's before some tics can be challenging," the Independent writes, "but it's really not on for people working in a public setting to be disrespectful and unhelpful," she says.
It is because of incidents such as this that she hopes to help bring about a change in awareness of Tourettes.
What is Tourette syndrome?
Tourette Syndrome (TS), a neuro-biological disorder, manifests itself with a combination of physical and verbal involuntary "tics" - involuntary, rapid, sudden movements that occur repeatedly, the BBC
The verbal tics are sounds which can be anything from such as grunts, sniffing, throat-clearing, blinking, coughing or saying words out of context.
The BBC writes: "It can be particularly debilitating because the vocal tics can include the uncontrollable use of obscene language - known as coprolalia - and repetition of phrases the person hears others use - called echolalia."
One common misconception is that people with Tourette's simply shout out swear words (coprolalia) – this is only true for one in 10 cases, the Independent writes.
For Thom, her verbal tics prompt her to say the work 'biscuit' up to 900 times an hour, and sudden body movements mean she struggles to walk and write and even has to wear padded gloves because she hits herself hundreds of times a day, the Daily Mail
The name Tourette syndrome was bestowed by the famous neurologist Jean-Martin Charcot (1825–1893) on behalf of his resident, Georges Albert Édouard Brutus Gilles de la Tourette (1859–1904), a French physician and a neuropsychiatrist, who published the first account of nine patients with the disorder in 1885. Then, it was said to be rare. Today, that's no longer the case.
According to the Centers for Disease Control, three of every 1,000 children age six through 17 in the U.S. have been diagnosed with TS. TS affects people of all racial and ethnic groups.
Thom is one of an estimated 300,000 people in Britain with Tourette’s and her condition has become increasingly severe with age.
"If I could give one piece of advice to parents of a child with Tourette's," Thom told the Sun. "I would say talk about it and try and give them that ability and confidence to explain it to others."
It was something she didn't have when her tics began at the age of six.
Throughout her school years, she experienced involuntary movements and noises and remembers saving up her tics to let them out secretly in the bathroom.
Jess adds: “Tourette's can be very socially isolating which is why understanding and awareness are important.
No-one at school fully understood what was going on. She was only properly diagnosed in her early 20s.
Currently, there's no cure for Tourette Syndrome. In some cases, a device called "brain pacemaker" can be implanted in the brain to regulate severe tics. Medication management again to control behavior can add more disability for the sufferer due to the side effects.
She began the not-for-profit social enterprise, Touretteshero, which she co-founded with friend and colleague Matthew Pountney "to reclaim the laughter associated with Tourettes Syndrome and celebrate the surreal experiences that living with it brings. Our goal is to change the world one tic at a time," Thom writes.
It was Pountney who helped her to see her pain as her power-- ultimately her super power.
One day feeling down about her tics, Matthew said her tics "were like a crazy language machine" and that it was wasteful not to do something creative with them.
At this point something changed in Jess, the Sun
reported. She explains: "He instantly turned it in my head and made me feel much more positive toward the things I was saying.”
"Tourette's is not the hero's problem, it is her power," Thom says.
Touretteshero evolved from an idea to a website (Touretteshero.com) which features a uncensored blog of Thom's daily life.
Recently, wanting to raise awareness of the disorder with children, Touretteshero took physical form – with a blue-and-white-clad superhero complete with mask and cape.
Dressed as Touretteshero, Thom visits schools, teaching children about her life by playing games, costume-making and storytelling. Much of the focus is on how interesting it is for us all to be different.
"There’s not a lot I can do about having Tourette’s," she said, writes the Daily Mail
. "But I can change people’s perceptions."
Thom not only wants to change the perceptions of children, but of adults. And she started this change with one adult in particular -- the Prime Minister of Britain
"I was speaking off the cuff"
In January, in an interview with The Sunday Telegraph
, Prime Minister David Cameron compared being heckled by Ed Balls, the shadow chancellor, as "like having someone with Tourette's sitting opposite you".
According to the BBC
, the prime minister specifically said of Balls: "He just annoys me. But I'm very bad, in the House of Commons, at not getting distracted, and the endless, ceaseless banter, it's like having someone with Tourette's permanently sitting opposite you."
It wasn't the first time he used the disability in a political debate. In 2002, he raised the issue of Tourette Syndrome
, this time, referring to himself. "I have spent all week in a state of complete fury," he began. " Like a man possessed with an advanced case of Tourette syndrome, I have been shouting at traffic and assailing my fellow men (and women)."
After public outrage over the comment in January, speaking on the BBC's Andrew Marr
Show, Cameron later apologized.
"I was speaking off the cuff and if I offended anyone, I am very sorry," he said.
But he did offend one Jess Thom, who said his apology wasn't enough and took to the Guardian
to say so.
Thom said in part: "What do you mean David? Is there something wrong with having someone with Tourette's sitting opposite you?"
Are you drawing on the old stereotype that anyone with Tourette's is incoherent and swears a lot? Or perhaps you mean that if Balls had Tourette's what he had to say would be irrelevant? I'm assuming you don't mean he has motor tics that seriously limit his mobility or make him punch himself in the head repeatedly? Or that he shouts "biscuit" 16 times every waking minute of the day, as I do?
For lots of people, Cameron's casual use of a disability to insult another politician will be shocking. For many other people it won't, either because they think Tourette's is a fair target for jokes because of the common misconception that everyone with Tourette's swears; or perhaps it's because they're familiar with the government's abhorrent attitude to disabled people and the raft of policies it's forcing through that hit them the hardest. It's easy to forget that the man in charge had a disabled son himself and is the patron of a well-known charity for disabled children.
Her commentary provoked reactions that filled the comment section. While many cheered her efforts, others said she needed thicker skin. Thom decided to step into the conversation there, too.
In the comment
section she said: "A large part of my life with Tourettes involves challenging people who are behaving negatively towards me because of my condition."
I have to do this every day in one way or another. Challenging the Prime Minister about his comment is no different. But it is even more crucial he understands because it is his government that makes the policies that impact on our lives and none of us can walk away from those or brush them off as harmless gaffes.
If you want to learn more about Thom and her journey. You can visit the Touretteshero website at www.Touretteshero.com