Faculty Advisor

DeHart, Monica

Area of Study

Arts, Humanities and Social Sciences

Publication Date

Summer 2017

Abstract

This summer I conducted a project studying the stigma of facial anomalies through the eyes of the health care professionals who work with patients who have them. My goal was to learn what kind of stigma these individuals deal with and what kinds of support systems are available to help these individuals thrive in a society that values the concept of normalcy. I believe that this research is particularly important because of the large number of individuals who have a facial anomaly of some sort and because it relates to many other forms of stigma tied to the perception of disability that is so prevalent and yet so often overlooked.

For this project I interviewed eleven health care professionals who have experience working with patients with facial anomalies. I chose to speak with health care professionals because while they mostly lack personal experience with facial anomalies they have the opportunity to observe a broad range of individuals with facial anomalies during their work. I spoke to surgeons, pediatricians, psychiatrists, speech pathologists, audiologists, social workers, genetic counselors, and orthodontists. I conducted the majority of my interviews over phone or Skype since scheduling in person interviews with such busy professionals was often impossible. All of the health care professionals I spoke to had worked with patients with facial anomalies and some of them have even dedicated their careers to working with these patients both here in the United States and on medical missions abroad.

In conducting this research I found that the medical community is for the most part very aware of the social stigma associated with facial anomalies. While it is possible that there was some bias due to the fact that many of the individuals I interviewed have chosen to focus there work on craniofacial care even the ones who have not chosen to outright focus on facial anomalies seemed at least generally aware of the problem. My questions focused on the examining the stigma associated with facial anomalies, the currently available systems of social support, and what further forms of support these professionals believe is still needed. Analysis of the transcripts revealed the following themes emerging in the interviews. For the discussion of the stigma of facial anomalies the primary themes raised were, the perceived relationship between appearance and intelligence, the social ostracization, in particular due to communication difficulties, and the fact that there is a great deal of personal choice in regards to how much the stigma shapes a person’s life. Respondents described the main forms of support as medical and social, noting that both came predominantly from healthcare professionals on craniofacial panels, which are heavily focused on medical support, leaving most of the social support to family. Finally when asked what forms of support were still needed, the ones most frequently mentioned were increased communication between patients with facial anomalies, better communication between the patients and their health care providers, and a greater focus on educating parents and schools in regards to how to provide social support for students with facial anomalies. From my research I think that a deeper understanding of all these issues can help understand the way stigma about facial anomalies effects social interaction and provide a better understand how to reduce this stigma.

Publisher

University of Puget Sound

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