Termination of Pregnancy After NonInvasive Prenatal Testing (NIPT): Ethical Considerations

This article explores the Nuffield Council on Bioethics’ recent report about non-invasive prenatal testing. Given that such testing is likely to become the norm, it is important to question whether there should be some ethical parameters regarding its use. The article engages with the viewpoints of Jeff McMahan, Julian Savulescu, Stephen Wilkinson and other commentators on prenatal ethics. The authors argue that there are a variety of moral considerations that legitimately play a significant role with regard to (prospective) parental decision-making in the context of NIPT, for example, views on the morality of abortion and understandings of the impact of disability on quality of life. The variable nature of such considerations, both singularly and combined, suggests that any approach to NIPT should be sensitive to and understanding of similarly variable parental assessments and decisions. The implications of the approach developed for current and future policies in this area are explored, along with the impact of such arguments on ideas about procreative beneficence

Out On The Edge: the exclusion of disabled people from the British gay and lesbian community

Produced by The Center on Disability Studies, University of Hawai'i at Manoa, Honolulu, Hawai'i, The Frank Sawyer School of Management, Suffolk University, Boston, Massachusetts, and The School of Social Sciences, The University of of Texas at Dallas, Richardson, Texas for The Society for Disability Studies

Man up.

Review of "Masculinities: Liberation through Photography

Performance management: a qualitative study of relational boundaries in personal assistance

Personal assistance (PA) is a model of support where disabled people take control of recruiting, training and managing the people that support them. Personal assistance differs from other forms of care, such as domiciliary or informal care, because the disabled person is in control of how, when and by whom they are supported. With the advent of personal health budgets, PA is no longer limited to social care but is also central to future NHS services and funding arrangements. The aims of this study were to gain a deeper understanding of PA relationships, and to explore how both parties manage interpersonal challenges. We report on data from 58 qualitative interviews with disabled employers and personal assistants. Applying concepts from Goffman's (1959) scheme of impression management, we present an analysis of the relational dynamics that occur when two people cooperate in shared endeavours. Goffman's concepts of team members and non‐persons, in addition to the themes of regions and information control, aid a more fundamental understanding of the relational dynamics that occur between disabled employers and their PAs

Sing Your Heart Out: community singing as part of mental health recovery

This paper reports on a qualitative evaluation of a Norfolk-based network of community singing workshops aimed at people with mental health conditions and the general public. The aims of the study were (a) to evaluate the effectiveness of the Sing Your Heart Out (SYHO) project and (b) to identify the key features which made the project distinctive. The study draws on 20 interviews with participants, two focus groups with organisers and workshop leaders, and participative observation over a 6-month period. Interviewees all reported improvement in or maintenance of their mental health and well-being as a direct result of engagement in the singing workshops. For most it was a key component, and for some the only and sufficient component in their recovery and ongoing psychological stability. SYHO was regarded as different from choirs and from most other social groups and also different from therapy groups, music or otherwise. The combination of singing with an inclusive social aspect was regarded as essential in effecting recovery. The lack of pressure to discuss their condition and the absence of explicit therapy was also mentioned by most participants as an important and welcome element in why SYHO worked for them. The combination of singing and social engagement produced an ongoing feeling of belonging and well-being. Attendance provided them with structure, support and contact that improved functioning and mood. We conclude that the SYHO model offers a low-commitment, low-cost tool for mental health recovery within the community

The sexual politics of disability, twenty years on

This paper follows up on qualitative interviews conducted with British disabled people in 1994-6, exploring how people’s lives and relationships have changed over twenty years (n=8). The themes include imagery and identity, access to relationships, social context and attitudes. Ageing brought greater self-acceptance, and also lower salience of impairment; but for some, it also brought co-morbid chronic health issues which made life more complicated. Respondents generally felt that social attitudes to disabled sexuality had not changed sufficiently, but also that UK austerity policies risked undermining hard-won independence and wellbeing

Psychiatrists’ views on recovery colleges

Purpose: The purpose of this paper is to provide insight into the views and attitudes that psychiatrists have about Recovery Colleges (RCs). Design/methodology/approach: Semi-structured interviews were conducted with 10 psychiatrists from the Norfolk and Suffolk Foundation Trust (NSFT). Findings: Psychiatrists had a strong concept of the RC model, and were broadly positive about it, recognising many benefits. Various challenges were also acknowledged including how the RC model interacts with the medical model. Originality/value: This is the first known study to explore solely psychiatrist’s views of RCs, a group who are likely to be particularly influential within services. The sample was relatively unexposed to RCs, enabling insight into how the RC is perceived by those outside of its functioning as well as the state of wider organisational support, which is important for the success of RCs

Quadriplegia, virtue theory and flourishing:a qualitative study drawing on self-narratives

Grounded in the logic of the virtue tradition, the qualitative study “the good life and quadriplegia” collected the self-narratives of people that have lived with the impairment over the medium to long term. This article draws on those narratives to describe how people understood the good life in the context of the losses and hardship of their spinal-cord injury, and the virtues and attitudes that helped them to achieve it. While highlighting the importance of virtue, participant stories resisted the ideology of the positivity myth, recognising that flourishing includes hardships, limitation, and failure, as well as meaning, virtue, and accomplishment

When the political becomes personal: Reflecting on disability bioethics.

A discussion of the connection between activism and academia in bioethics, highlighting the author's own trajectory, exploring the extent to which academics have an obliation to be 'judges' rather than 'barristers' (as explored by Jonathan Haidt) and asking questions about the relationship of disability to positions in bioethics