Relationships, Personal Communities and Visible Facial Difference

Abstract

People with visible facial difference often experience other people reacting negatively to their appearance. For many, this is part of everyday life. Research has identified social support as critical in adaptation processes. This is the case both for those whose facial difference was apparent at birth, and those who experienced injury or illness. There is a lack of a comprehensive theoretical construct for exploring how personal communities provide resources needed by adults to live well with visible facial difference. The combination of semi-structured interviews and creation of personal community maps provided opportunities to explore the interplay between respondent accounts and patterns of relationships people are embedded within. Seventeen adults with visible facial difference and two unaffected ‘significant others’ were interviewed. The findings provide evidence that personal communities are important social spaces for negotiation of resources that enable adults to feel connected, valued and safer within wider communities. Social support was not described as a property of the individual, but as experienced with combinations of people that change according to situation, place, or time. A diversity of personal community patterns were found, largely consistent with findings from Spencer and Pahl (2006), with one variation which increased intimate support. Some personal communities were less supportive and consequently people were at risk of isolation. Processes within personal communities were helpful both in dealing with negative social environments and in helping establish different versions of ‘normal’ life. The importance of focussing on social contexts, when seeking to understand how people live with visible facial differences, is highlighted.