Tourette Syndrome seems to have a similar prevalence rate worldwide, of about two to six cases per 10,000 people. However, while it is now quite familiar in the United States, it may still be unfamiliar in many parts of the world.
I began this film while working on an anthropological research study about Tourette Syndrome and Obsessive Compulsive Disorder in Bali, funded by the World Health Organization and carried out in collaboration with local Balinese psychiatrists and mental health professionals. This gave me unique access to the comparatively small group of Balinese people who have Tourette Syndrome. I met Gusti Ayu and other Indonesians with the syndrome as part of this research and was moved by her story.
Tourette Syndrome is a neurological condition that cannot be cured, although its symptoms can often be ameliorated by medication and psychological and behavioral treatment. In some cases, tics may naturally subside on their own as part of the developmental process; in others, people will simply learn to cope with tics and therefore minimize their impact on daily life. While Balinese traditional treatment may be helpful for certain health or mental health problems, it is unlikely to be effective with Tourette Syndrome, because it cannot effect the neurological mechanism that causes tics.
There are a number of potential reasons why Gustis life was so deeply impacted by her tics and Dayus life was comparatively unaffected. One might be the fact that Gustis family lived in a rural region of Bali where local beliefs about the supernatural causes of illness are stronger. Another might be the fact that Dayu had been able to find a husband of the same caste while Gusti remained single, and therefore became an economic burden on her family.
Gusti is doing well. She has been working at a fair trade craft organization for a number of years, living independently, participating in film screenings, advocating for people with Tourette Syndrome, enjoying her social circle, and even dating.
Contribute to this page
Suggest an edit or add missing content