Sometimes I feel ashamed to be close with my friends.
“How come you’re so distant? Just come over here, it’s no problem, you know.”
I’m not allowed to have a small heart.
(I am republishing a lot of my ‘legacy content’ from our PLOS Neuroanthropology weblog, which has been taken down, along with many of the other founding PLOS Blogs. Some of these, I am putting up because I teach with them. If you have any requests, don’t hesitate to email me at: greg (dot) downey @ mq (dot) edu (dot) au. I suspect many of the links in this piece will be broken, but I will endeavour to try to slowly rebuild this content. Originally published 16 May 2012.)
Gusti Ayu Ketut Suartini, a young Balinese woman, shares how hard it is to be close to her new-found friends; they have to remind her that they are not afraid of her unusual movements, grunts, strange facial expressions and unexpected tics, the symptoms of her Tourette Syndrome. She remembers too well how the neighbours in her home village made fun of her awkward tics, calling her ‘bird dancer’ because her odd movements – so out of line with Balinese norms of placid, graceful comportment – resembled Manuk Rawa trance dancers, possessed by spirits. The neighbours even suggested she might be suffering a kind of permanent possession by the spirits who only temporarily inhabited the dancers.
We meet Gusti, and see how her life is shaped by the way other people interpret her tics, spitting, and uncontrollable movements, in Robert Lemelson’s movie, The Bird Dancer. The Bird Dancer doesn’t show us Tourette Syndrome (TS) as a disease, or discuss its neurological underpinnings. Instead, the movie is an exploration of Tourette as ‘illness’: local, meaningful, social, demoralizing, and driving Gusti and her family to despair.Continue reading “Not allowed to have a small heart: Tourette Syndrome”