The empty gesture: tourette syndrome and the semantic dimension of illness

Abstract

This article, based on fieldwork with people with Tourette Syndrome (TS), explores how problems of cultural classification shape the experience, treatment, and social significance of disease symptoms. TS resists incorporation into the standard con ceptual frameworks through which Americans understand illness. Its symptoms seem to stand between the psychological and the neurological, between the uncon trolled physicality of movement disorders and the disordered intentionality of psychiatric conditions. The difficulties of translating these behaviors into a cultural discourse which cannot easily accommodate them amount to semantic symptoms, and are the primary burden of TS for its sufferers. The article considers some of the key conceptual ambiguities involved in TS, the difficulties they present, and some of the methods by which people address them. It argues that a focus on such semantic aspects of illness can provide a fuller understanding of the relationship between culture and illness, which can contribute to the well-being of afflicted persons. (Tourette Syndrome, semantic aspects of illness, medical anthropology) The man staring at Meredith from the far side of the bus brought her out of her reverie, and she realized with a start that she was winking. He peered at her over his newspaper with an uneasy expression she had seen before. The manager of a medical office, Meredith Williams' looked like most of the other passengers on the bus, well dressed and carefully groomed. The intermittent squeeze of her right eye, however, accompanied by a slight opening of the mouth and a twitch of the nose, suggested some sort of mental instability. He was struggling to make sense of her, she knew, so she decided to help him. She opened the eye wide and pulled on the lower lid, blinked it again a few times, and then looked up at him with a smile. "Don't you hate contact lenses?" Comprehension dawned on him visibly, and he smiled back; the tension evaporated, he returned to his newspaper, and Meredith spent the rest of the short journey concentrating on not blinking. When her stop came he did not even notice her leaving. Such experiences are common for people with Tourette Syndrome. TS sufferers in Indiana interviewed over the past two years have almost all told one or another story like Meredith's, in which a stranger's perception of a neuro logical tic is deflected by a quick act of misdirection. The episodes begin with a tension, as the observer visibly struggles to make sense of a puzzling or nonsensical behavior; the observed person then provides a context, such as attributing the blinking to an irritating contact lens; and the episode concludes