Recognizing difference: in/visibility in the everyday life of individuals with facial limb absence

Abstract

People who lack part(s) of their face have a visibly different appearance both due to their facial difference itself and the medical aids that they use to cover it (e.g. prostheses, bandages). In this article, we draw on interviews with affected individuals in order to investigate how visible difference features in their everyday experience. The visibility of their facial difference, we show, comes into play as they interact with various others in the contexts of their daily life. However, respondents' visibility manifests in different ways, depending on whether they cover or uncover their facial difference. These different modes of visibility make for distinct 'visibility experiences' , as participants meet others who notice-or fail to notice-their atypical appearance. By exploring these experiences, our article provides insights into the role of visibility in interviewees' everyday life, and demonstrates how they actively negotiate their social recognition within encounters with various others. Points of interest • The experiences of individuals who lack part(s) of the face-and, generally, the experiences of individuals who have a visibly different face-have not received much attention in disability scholarship. • Individuals who have lost part(s) of the face can display their faces by either uncovering the missing facial area or covering it with various medical aids. In encounters with others, these different displays produce different experiences. • People who have an unusual face may actively negotiate the meaning their appearance receives in social interactions. In this way, they try to avoid being reduced to their difference.

Body image distress in head and neck cancer patients: what are we looking at?

“…Belonging to a social group is important for identity [ 42 ]. The finding that identity in HNC can also be threatened by functional bodily changes extends other research that describes identity threat in HNC patients from an appearance perspective [ 14 ].…”

“…In daily life, patients are constantly reminded of their disfigurement, evoked by painful or itching sensations or by unwanted attention from others [ 13 ]. Patients seem to gradually learn to cope with these situations [ 13 , 14 ]. However, insight into experiences from HNC patients with other (more common) bodily changes than an amputation is warranted.…”

Living with a partly amputated face, doing facial difference

“…Alluding to its power to stop others in their tracks, Stella jokingly calls the gauze dressing she sometimes wears over her missing nose an "emergency warning triangle". Interviewees dislike being the object of notice, indicating it makes them feel self-conscious, ashamed, or inferior (Yaron et al 2018). Still, most choose to ignore covert staring, especially from children.…”

“…My work of the past years has sought to complement the literature on 'disfi gurement' by exploring what it means to live with a partly amputated face. Analysing affected individuals' stories, my colleagues and I investigated the everyday usage of facial prosthetics , the embodiment of facial difference , and the role of in/ visible difference in everyday social interactions (Yaron et al 2018). As our work reveals, individuals who lack part(s) of the face contend with physical impairments as well as a radically altered appearance.…”

A Disability Bioethics Reading of the FDA and EMA Evaluations on the Marketing Authorisation of Growth Hormone for Idiopathic Short Stature Children

“…Disability is not necessarily an abrupt and disruptive event, but in some cases, like cerebral palsy, it might be a gradual experience [29]. The way one experiences one's own condition is not merely determined by the condition in itself (for example, lacking parts of the face, such as the nose or ears), but, looking at one's embodied interaction with others and the world, it might vary with changes in situations, relationships, and one's emotions [41,42]. Also in this case, there is no clear suggestion for a justification of medical intervention, but for an alternative way of seeing.…”