Living with a partly amputated face, doing facial difference

Disability studies as an academic field has long sought to highlight the lived experiences of people with disabilities, thereby giving voice to a population that has been the object of much discourse but rarely its subject. Despite the field’s engagement with various conditions, there is limited scholarly work on the personal meanings of amputation and prosthetics usage. Experiences associated with the loss of part(s) of the face, in particular, have remained uncharted.  In this article, I address this lacuna by drawing on interviews with twenty affected individuals. Situating their accounts in contemporary scholarship on bodily difference within the humanities and social sciences, I demonstrate that losing part(s) of the face calls for various ways of ‘doing’  difference in everyday life. This empirical-philosophical analysis serves three purposes. On an empirical level, the article unpacks the everyday doing of facial difference, showing it simultaneously involves social, embodied, and material dimensions. On a practical level, this integrative understanding of facial difference complements prevalent approaches to ‘disfi gurement’ that construe it as an individual—biomedical or psychosocial—problem. On a theoretical level the article clarifi es and advances the concept of doing, which plays a key role in gender studies, phenomenology, and science and technology studies

Population-specific signatures of intra-individual mitochondrial DNA heteroplasmy and their potential evolutionary advantages

Heteroplasmy is the existence of more than one mitochondrial DNA (mtDNA) variant within a cell. The evolutionary mechanisms of heteroplasmy are not fully understood, despite being a very common phenomenon. Here we combined heteroplasmy measurements using high throughput sequencing on green turtles (Chelonia mydas) with simulations to understand how heteroplasmy modulates population diversity across generations and under different demographic scenarios. We found heteroplasmy to be widespread in all individuals analysed, with consistent signal in individuals across time and tissue. Significant shifts in haplotype composition were found from mother to offspring, signalling the effect of the cellular bottleneck during oogenesis as included in the model. Our model of mtDNA inheritance indicated that heteroplasmy favoured the increase of population diversity through time and buffered against population bottlenecks, thus indicating the importance of this phenomenon in species with reduced population sizes and frequent population bottlenecks like marine turtles. Individuals with recent haplotypes showed higher levels of heteroplasmy than the individuals with ancient haplotypes, suggesting a potential advantage of maintaining established copies when new mutations arise. We recommend using heteroplasmy through high throughput sequencing in marine turtles, as well as other wildlife populations, for diversity assessment, population genetics, and mixed stock analysis

Doing facial difference: The lived experiences of individuals with facial limb absence

What is it like to live with a facial disfigurement? Gili Yaron researched this question from an empirical-philosophical perspective. She interviewed people who wear a facial prosthesis and examined their experiences based on philosophical theories about the body, technology and disabilities. 'Difference' is not so much defined in medical or psychological terms, but in terms of the everyday experience. The functional disability and appearance of people affected by a facial difference influence the way they carry out their daily activities. Losing a part of the face therefore radically changes how people perceive their body and the world around them: both become less familiar and less reliable. In order to cope with this, they develop new ways of 'doing' their face, which requires a continuous daily effort. These insights are extremely valuable, both for the people affected and for healthcare professionals. The study also touches on fundamental issues, such as the nature of the human face, the function of prosthetics, the course of social interactions, the role of visibility in our lives and the meaning of difference

Recovering a "Disfigured"Face: Cosmesis in the Everyday Use of Facial Prostheses

Prosthetic devices that replace an absent body part are generally considered to be either cosmetic or functional. Functional prostheses aim to restore (some degree of) lost physical functioning. Cosmetic prostheses attempt to restore a “normal” appearance to bodies that lack (one or more) limbs by emulating the absent body part’s looks. In this article, we investigate how cosmetic prostheses establish a normal appearance by drawing on the stories of the users of a specific type of artificial limb: the facial prosthesis. Given that prostheses are first and foremost devices worn upon the body, such an analysis requires an understanding of the ways in which bodies and technologies interact. We thus interpret users’ stories by critically engaging with the work of disability researcher and Actor-Network theorist Myriam Winance, as well as with the postphenomenological scholarship of Don Ihde and Peter-Paul Verbeek. Using this framework, we explore users’ attempts to achieve a proper fit between their faces and their prostheses, the technological transparency such a fit enables, and the ways in which transparency mediates users’ everyday exchanges with others. We conclude that a normal appearance, when it is achieved by means of prosthetics, enables the device’s user to navigate a precarious social environment as they encounter and interact with others in public

Recognizing Difference:In/visibility in the Everyday Lives of Individuals with Facial Limb Absence

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

Author Correction: Population-specific signatures of intra-individual mitochondrial DNA heteroplasmy and their potential evolutionary advantages

An amendment to this paper has been published and can be accessed via a link at the top of the paper

Positive Health and the happy professional:a qualitative case study

BACKGROUND: Primary care professionals (PCPs) face mounting pressures associated with their work, which has resulted in high burn-out numbers. Increasing PCPs’ job satisfaction is proposed as a solution in this regard. Positive Health (PH) is an upcoming, comprehensive health concept. Among others, this concept promises to promote PCPs’ job satisfaction. However, there is limited research into PH’s effects on this topic. This study, therefore, aims to provide insight into how adopting PH in a general practice affects PCPs’ job satisfaction. METHODS: An ethnographic case study was conducted in a Dutch general practice that is currently implementing PH. Data collected included 11 semi-structured interviews and archival sources. All data were analyzed thematically. RESULTS: Thematic analysis identified three themes regarding PCPs’ adoption of PH and job satisfaction, namely [1] adopting and adapting Positive Health, [2] giving substance to Positive Health in practice, and [3] changing financial and organizational structures. Firstly, the adoption of PH was the result of a match between the practice and the malleable and multi-interpretable concept. Secondly, PH supported PCPs to express, legitimize, and promote their distinctive approach to care work and its value. This strengthened them to further their holistic approach to health and stimulate autonomy in practice, with respect to both patients and professionals. Thirdly, the concept enabled PCPs to change their financial and organizational structures, notably freeing time to spend on patients and on their own well-being. This allowed them to enact their values. The changes made by the practice increased the job satisfaction of the PCPs. CONCLUSIONS: PH contributed to the job satisfaction of the PCPs of the general practice by functioning as an adaptable frame for change. This frame helped them to legitimize and give substance to their vision, thereby increasing job satisfaction. PH’s malleability allows for the frame’s customization and the creation of the match. Simultaneously, malleability introduces ambiguity on what the concept entails. In that regard, PH is not a readily implementable intervention. We recommend that other organizations seeking to adopt PH consider whether they are willing and able to make the match and explore how PH can help substantiate their vision. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12875-021-01509-6

Facing a Disruptive Face: Embodiment in the Everyday Experiences of "Disfigured" Individuals

In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals' engagement with everyday projects when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face's absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodimen

Women's perspective on life after total laryngectomy:a qualitative study

Background Physical and psychosocial challenges are common after total laryngectomy. The surgery leads to lifelong changes in communication, airway, swallowing and appearance. As we move towards health models driven by patient-centred care, understanding the differential impacts of surgical procedures on subgroups of patients can help improve our care models, patient education and support systems. This paper discusses the experiences of women following total laryngectomy. Aims To gain an insight into the impact of total laryngectomy on women's daily life while identifying their specific rehabilitation needs. Methods & Procedures This paper is based on in-depth, semi-structured interviews with eight women who had undergone total laryngectomy. These interviews were conducted with women at least 1 year after they had undergone total laryngectomy, and the participants did not have recurrent disease. Using an interview guide, participants were encouraged to discuss their everyday experiences, while also focusing on issues typical to women. The transcribed interview data were analysed by thematic analysis, taking interpretative phenomenological analysis as a lead. Outcomes & Results The interviews revealed three main themes: disease and treatment as a turning point, re-establishing meaningful everyday activities, and persistent vulnerability. Participants reported experiencing challenges in their rehabilitation process due to physical disabilities, dependency on others and experienced stigma. Women-specific challenges arose in dealing with the altered appearance and voice, performing care activities, and the spousal relationship (including intimacy). Conclusions & Implications Women who undergo total laryngectomy are likely to experience issues in returning to work, the performance of informal care-work, the spousal relationship, intimacy and social interaction due to stigmatization. Medical pretreatment counselling and multidisciplinary rehabilitation programmes should help patients form realistic expectations and prepare them for the changes they will face. A gender- and age-matched laryngectomized patient visitor can contribute to this process. Rehabilitation programmes should incorporate the partner and offer psychosocial support for women following total laryngectomy to return to their former roles in family life, social life and work-related activities