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Abstract
In this thesis, I explore musical experiences of people with Williams Syndrome (WS) to examine how music not only shapes personal identity and worldview, but can also serve as a path to citizenship for these individuals. WS has historically been examined within a deficit-centric and medicalized model of disability by the scientific and medical community; researchers have characterized WS as a congenital developmental disorder that is manifested in cardiovascular disease, low IQ, unique facial features, hypersociability, and in some cases, high degrees of musical aptitude. In contrast to this medical paradigm that tends to stress disability and disorder, I approach the study of WS musically and ethnographically with an emphasis on the abilities, creativity, and agency of these individuals. I examine my time at the Williams Syndrome Association-sponsored summer camps for children, teenagers, and young adults at the Whispering Trails Camp in Grand Rapids, Michigan. During this three-week period I immersed myself in the camp community and engaged in musical ethnography through participant-observation and interviews with campers, parents, and staff members. In this thesis I will demonstrate the ways in which the musical experiences of the campers transform notions of WS from a dis-ability into a difference of ability, or diffability. Though society has often viewed individuals with WS as being dis-abled, the personal narratives presented in this thesis, along with my own experiences of shared musicking, will serve to illuminate the disconnect between how our culture constructs and imputes notions of disability to individuals with WS and the ways these people conceptualize their own identities. A central concern of this work is to ensure the presence of my interlocutors' voices and to allow them to articulate their feelings about what it means to be an individual with WS, especially with regard to how music and musical experiences impact and affect their worldviews.
