Patricia Neville, Andrea Waylen, Sara Ryan and Aidan Searle (Bristol/Oxford), ‘From ‘staring’ to ‘not caring’: facial difference and self-determination among adults with cleft lip and palate’

Dr Patricia Neville, Dr Andrea Waylen and Dr Aidan Searle from the University of Bristol and Dr Sara Ryan of the University of Oxford will be speaking at the Effaced from History conference on April 1. To register and view the full program, visit the conference website.


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. As researchers in this area, our encounters with young people and adults with CLP support the notion that CLP can be a life affirming experience, albeit with challenging moments at times. Indeed, having CLP can provide opportunities for self-growth that go above and beyond the terms of the negative label. We aim to present and discuss this notion of psychological agency in people with CLP. Using qualitative data we will use self-determination theory to reveal how the internal psychological world of adults born with CLP reacts to and operates alongside negative external forces and, in so doing, serves the development of a positive self-image.

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