Abstract
The disease category of Tourette syndrome and its implication evolved closely with the development of Western psychiatry. As the medical paradigm shifted from psychodynamic to organic and physiological etiology within the neuropsychiatric profession, the 1960s-70s witnessed a fundamental transformation concerning the way in which Tourette syndrome was understood. As patient groups and networks—the Tourette Syndrome Association (TSA) for one—grew rapidly in America, the concept of Tourette syndrome has also changed from a rare psychological disease in the past to a physiological disorder with an solid organic basis and high prevalence. With explosive advancement in neurology in the 1980s and 90s, the neurophysiological implication of Tourette syndrome has been further consolidated. Interestingly, Tourette syndrome is still a relatively new disease category in Taiwan. Psychiatric profession followed the Western physiological paradigm and started to research on Tourette syndrome around 1980s. Later in late 1990s, the main discourse gradually shifted to neurology. Nevertheless, the disease did not enter the public consciousness until about 2000. As a main knowledge node, neurologists in Taiwan, following the American model, made use of various kinds of media and allied with other health educational providers to publicize Tourette syndrome. They sought alliances among Tourette parents and elementary school teachers, and turned children with Tourette into targets of medical gaze. During the process, Tourette syndrome and the related medical knowledge became increasingly common in Taiwan. Even though the whole set of knowledge seemed to be transplanted from modern neurology, the category itself has specific historical and social characteristics in Taiwan. In fact, the mainstream knowledge of Tourette syndrome was shaped by a variety of agents. Not only did different professions developed their own knowledge and practices based on their professional concern, medical service users also played an important role in this process of negotiation. Meanwhile, a unique image of ‘people with Tourette’ was shaped and stabilized in the public domain. The introduction of Tourette syndrome to Taiwan has great impact on people diagnosed with the disease when they encounter this new body of knowledge. Furthermore, as in the cases of other countries, they has also been actively participating in framing the disease and its cultural images. The present study focuses on adult ‘Tourette patients’ in Taiwan—those who did not encounter Tourette Syndrome until their adulthood or late adolescence. Their unique experiences helps exemplify this changing process much more vividly. On the one hand, they appropriate the clinical side of the neurological discourse, and, on the other, they use it to work collaboratively with the medical professionals to generate a self-identity, ‘Tourette ren’ (Touretter), which is able to further their personal and social interests. Their newly gained neurological knowledge accordingly reconfigure every facet of daily life and make their perception of themselves an unprecedented experience. This new kind of self-identity in a sense not only empowers them and helps eradicate social stigma and moral burden, but also provides them with more possibilities in regard to their personal development. However, the new identity produces a series of new agenda which people with Tourette have to deal with. By exploring their experiences, this study brings to forth dynamic and inter-shaping relationship between disease category and medical users.