Invisibility of Tourette Syndrome in South Asia: Survey

published on 04 January 2021
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Whilst Tourette Syndrome is a rare condition, it is more common than an individual perceives. 1 to 10 out of 1000 people in the world are affected by TS, yet its awareness is still lacking in South Asia. The condition may not be neurologically severe, but that does not mitigate the social ostracization faced by affected individuals. Some attempts to promote awareness in the community have been made like the Bollywood movie ‘Hichki’. Neurological disorder rarely surfaces in South Asian news and specific disorders like Tourettes are further accelerated?  in the dark. The grave reality suggests that most people in South Asia are not familiar with the term ‘neurodiversity’ let alone ‘Tourette Syndrome’. 

A survey was conducted with a sample of 70 respondents. The form was divided into three parts. The participants were shown the trailer of the Bollywood movie ‘Hichki’ and then asked questions about Tourette’s  related to the movie in the second section. Then, participants  were asked about TS generally. The data sample was small, yet portrayed a good representation of the awareness about the disorder in the community. The survey form was promoted through social media. 

Hichki portrays the struggles of a young teacher affected by Tourette Syndrome and represents how she blends into society. The majority of respondents didn’t think anything was wrong with the teacher. According to them, she was different but deserved to be treated without any discrimination. However, people were not familiar with the disorder prior to the survey unless they had experience working in a healthcare setting or had known someone with the syndrome. 

While most respondents considered her perfectly normal, some argued that no one was ‘normal’. Others believed she was physiologically and neurologically different. One response even debated that she fell under the ‘disabled category’, while another participant honestly answered that despite being normal, people would take time to adjust around her.

10% of participants in the survey even thought that the affected individuals may be faking it. Unfortunately, the lack of acceptance for neurodiverse individuals is often hidden behind masks; most people pretend to be supportive if asked, even though the situations  that these individuals face paint an opposite picture. 

However, 95% believed that TS affected individuals deserved an unbiased normal life. Some even argued that such individuals deserve special privileges. When asked what would they do if they saw someone with TS being bullied, the responses varied. Only 6% of people said they would either do nothing or had no idea what to do, the remaining 94% responded that they would educate the bully about the disorder, fight back, comfort the victim, and stand up for them so no one bullies them again.

3% of the respondents weren’t sure if they would befriend an individual with Tourette’s  and the other 97% gave an enthusiastic yes! This response in particular  sheds lights on the fact that people are ready to accept these individuals and despite the minimal awareness about Tourette Syndrome in the South Asian communities, most people are willing to educate themselves and stand up for individuals with TS if they are being bullied. Initiatives like Hichki are a good start to promote awareness and remove the stigma against neurological disorder in the region. 

Written by Zarnab Tufail

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