Aesthetic Discrimination: The Impact of North American Ideologies of Beauty on the Social Exclusion of People with Skin Disorders, the Healing Power of Special Summer Youth camps, and a Shift to the Social in Biomedical Practice

Abstract

This dissertation focuses on an understudied population of people with severe and chronic skin disorders concerning their lived realities in mainstream and specialized settings. Little is known about the life experiences of this population that, because of the rarity of these largely inherited disorders, is demographically scattered throughout North America. Through descriptive narratives from an individual perspective, the aim of this research is to educate others as to how people with severe and chronic skin disorders shape their identities, often as disabled, and experience daily life. Research participants include forty-four men and women, ranging in age from eighteen to seventy-plus years, who attended at least one of four week-long camp programs for children with severe and chronic skin disorders in the summer of 2009 at varied locations in the United States. Ethnographic research methods include participant-observation, face-to-face and telephone interviews to glean life narratives, and questionnaires for demographic and statistical analysis. Interview data are assigned to four categories: 1) Those with skin disorders who did not attend a childhood camp designed specifically for children with skin disorders, 2) those who did attend a skin disorders camp as a child and are now staff at such camps, 3) medical personnel who are camp staff, and 4) adult camp staff attendees who are not medical professionals nor any diagnoses of severe or chronic skin disorders. Through the ethnographic process themes evolved, including the effects of socially constructed markers of race, gender, age, and extent of disability, that further impact individuals' experiences of life in both the camp and mainstream settings. All persons with skin disorders interviewed report negative effects from stigmatization to a varying degree in mainstream society, while four report adverse experiences in the camp setting. All participants with skin disorders interviewed report that camp programs for children with skin disorders have positively impacted their lives in both mainstream and camp settings. Additionally, all medical personnel interviewed report positive, life-changing experiences and a new understanding of how people with skin disorders experience daily life. This dissertation also addresses the role that the social institution of biomedicine plays in the creation of camps for children with severe and chronic skin disorders, as well as how the relationships of biomedical practitioners and adults with skin disorders at camp change the perceptions of each other. Ultimately, it is the overt goal that this dissertation educates all readers with respect to how people with skin disorders are often labeled as being disabled and suffer consequences of stigmatization related to disability, as well as increase awareness of how mainstream society affects the identities of this particular population.