| This study provides an overview of the neurogenetic disorder known as Williams syndrome (WMS) with an emphasis on the ways in which WMS presents a new understanding of the interplay of culture and society, genetics, the brain and behavior. While I provide a review of the scientific literature of WMS, my aim is to “declinicize” the literature of WMS and provide an autoethnograhic account of living with my daughter, who has WMS; moreover, I am interested in exploring ways in which WMS, a “genetic” disorder, presents itself in various cultures. While a number of research groups have been studying the strengths and weaknesses of the cognitive profiles of individuals with WS in various countries, little or nothing is known about the effects of different cultures and environments on people with WS in various parts of the world. The empirical focus of the study is a cross-cultural comparison of the “hypersociability” between children in the United States with WMS and children in Japan with WMS.; This project is most clearly defined as a phenomenological, heuristic autoethnographic narrative (Patton, 1990: 68–73). It is phenomenological in that it is an “inquiry [that] focuses on the question: ‘What is the structure and essence of experience of this phenomenon [in this case, living with and seeing the world through the lens of WMS] for these people’” (Patton, p. 69). Phenomenology assumes that “there is an essence or essences to shared experience” (Patton, p. 70). By presenting the experiences of people living with WMS and through a “rigorous analysis of the experience” (Patton, p. 70), I will be in a position to identify the “basic elements of the experience that are common to members of a specific society” and, moreover, to study ways in which understanding WMS leads us to a better understanding of all people, of humanness. While researchers have studied Williams syndrome extensively, past studies have not been conducted using a narrative format such as open-ended interviews, nor have many studies included parents' perspectives.; *Dr. Oliver Sacks, after spending some time with my daughter, commented, “She certainly lives in a hello world, doesn't she?” The comment stayed with me and inspired the focus of this work. |
