Spreading the word on Tourette’s

By Wang Wenwen Source:Global Times Published: 2017/4/14 5:03:40

Jiang Yunsheng Photo: Courtesy of Jiang

When Jiang Yunsheng got a WeChat message from a stranger in Australia saying he wanted help from him, he had not expected that his efforts in fighting discrimination against Tourette syndrome could have such a wide impact.

Jiang received the message in late 2015. At that time, he had just started preparations for a documentary The Happiness of Tourette Syndrome, as he himself has Tourette syndrome, a neurological disorder with onset in childhood and characterized by multiple motor and vocal tics.

"I understood clearly the pressure he and his family have to endure," Jiang said.

Tourette syndrome is named after George Gilles de la Tourette, a French neurologist who published a study on nine patients with Tourette's in 1885.

The syndrome is not degenerative, but becomes a hindrance to communication for sufferers as people around them may feel uncomfortable with their tics and, intentionally or unintentionally, keep away from them. There may also be discrimination in the workplace, as the man in Australia shared his experience with Jiang.

As the disability has a 50 percent chance of being passed from parents to children, sufferers face many obstacles when it comes to relationship and marriage.

Jiang is no stranger in confronting these challenges. "I am patient with people's misunderstandings. But I can tell if people are just making jokes or if they have malicious intentions when they tease me," he told the Global Times.

Understanding Tourette's

People who are familiar with Jiang call him Big Jiang, or Dajong, because of his easygoing personality. The 34-year-old, from Northeast China's Liaoning Province, now lives in Shanghai and works as a documentary-maker.

He started to exhibit Tourette's symptoms when he was 6, and only came to know the disorder 18 years later.

Dajong said all Tourette's sufferers start to have the symptoms in their childhood. If their parents and society could have more insights into the nature of this disorder and more care would be offered, they would be able to have more control over their symptoms. If the tics worsen as they enter adulthood, it indicates that the sufferers must have controlling parents - like Dajong.

"The biggest problem is that the older generation is strongly prejudiced against this syndrome. Sometimes, we can be very capable but our parents or grandparents cannot comprehend our behavior," Dajong said.

According to Dajong, there is no official statistic on the number of people inflicted by Tourette's in the mainland, but he believes the figure is approximately 4 million. If the number of children exhibiting tics were included, the figure could exceed 10 million.

Meanwhile, despite that Taiwan has a Tourette Family Association and similar associations have been set up in countries such as the US and New Zealand, the mainland does not have an official organization that offers guidance and care for those with Tourette's symptoms.

Combating the disorder

"As Tourette's sufferers, we ourselves are the only platform for our opinions," Dajong said. "Since I can make films and it is an era of the new media, I didn't want to wait."

In November 2014, Dajong quit his job as a graphic designer and dedicated his time to making a documentary about Tourette's, through which he wanted to show the daily lives of people who have the disorder and the hardships they have to endure.

It took him four months to finish it and the documentary was released online in June, 2016. The Happiness of Tourette Syndrome is the first documentary in China that focuses on Tourette's. After talking with dozens of sufferers, Dajong focused on the stories of four people from different parts of China.

In the first episode, the audience can see the motor and vocal tics of floriculture genius Jasper Wu from Taiwan, but they can also see how skillful his hands are as he transformed flowers and other simple materials into beautiful artworks.

The second episode features an 18-year-old girl living in Guangzhou who has frequent tics and cannot be understood by her mom. But she was brave enough to tell people about her condition.

"Tourette's sufferers are all sensitive and naturally shy away from other people's attention. If people ask questions out of curiosity, it is a good opportunity to tell them about Tourette's," Dajong said.

The most unforgettable story is about Lady Hai, the mother of a child with Tourette's who appears in the fourth episode. She used non-medical means to help cure her child of the disorder.

For years, Lady Hai has been sharing the cause and treatment for Tourette's in her blog and communicating with other parents on how to get along with their children who suffer from Tourette's.

"She is the greatest woman that I have ever met," Dajong commented.

The documentary has been well-received online, but Dajong knew he needs to do more. This year, he is working with the Beijing-based Illness Challenge Foundation on a program called "Tourette's Free," which encourages businesses and companies to pledge that they would end discrimination against Tourette's sufferers during the hiring process.

"There is no legal binding, but hopefully the companies can be a source of encouragement when Tourette's sufferers look for jobs," Dajong told the Global Times.

A lover of music, Dajong also found that many Tourette's sufferers have musical talents. He is organizing a small concert in Shanghai in late April which hundreds of Tourette's sufferers will attend to enjoy the music and share their stories. Meanwhile, he wants to welcome more ordinary people into the world of Tourette's sufferers.

Attitude toward life

Despite all his campaigns, Dajong said he does not like the label of "spokesman for Tourette's" on him. To him, The Happiness of Tourette Syndrome is just one item in his portfolio as a documentary-maker, and he wanted to "appear humble," as he himself put it.

He did gain a lot from this documentary, such as meeting his current working partners and some public organizations. He does not identify Tourette's sufferers as special, but encourages them to pursue their own dreams.

"One needs to find his specialty so that people would ignore or minimize his symptoms," Dajong said. "I would like to make friends with Tourette's sufferers who have the same views as me. It is like being in a family."

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