Patricia Neville is Lecturer in Social Sciences in the School of Oral and Dental Sciences at the University of Bristol. She has published numerous articles on the intersection between the social sciences and dental health and education. Andrea Waylen is Senior Lecturer in Psychology at the University of Bristol. Her research focuses on dento-facial appearance and quality of life, particularly related to cleft lip and palate and head and neck cancer. Aidan Searle is Senior Research Associate in the School of Oral and Dental Sciences at the University of Bristol. His publications focus on facial disfigurement and on lifecourse epidemiology and oral health.
From ‘staring’ to ‘not caring’: the experiences of living with facial difference among adults with cleft lip and palate
According to Goffman’s (1963, p.14) typology of stigma, cleft lip and palate (CLP) registers as an example of stigma of the body, a mark of difference that is physical in nature and immediately apparent on meeting. The social and psychological burden of living with this ‘discredited identity’ (Goffman 1963, p.14) has been well documented within the academic record, which in turn has served to maintain the stigmatising effects of CLP. However, there have been recent calls from some clinicians and academics challenging the negative conceptualisation of CLP. One way to counter the hegemony of stigma in CLP studies is through qualitative research and exploring the self-representation of adults with CLP. This chapter discusses qualitative findings from face to face interviews with adults with Cleft lip and / or palate. This data acknowledges that living with CLP registers as an experience of feeling different; however, it also reveals that this experience is negotiated through a number of key transitional periods as they grow into adulthood. Progression through each of these stages can be either helped or hindered by the actions of some key institutional players -their immediate family, peer group, and the school and work settings. Overall, this chapter contends that CLP can be a life affirming experience, albeit with challenging moments at times.
Keywords: stigma; cleft lip; cleft palate; qualitative research; stereotypes