Serving two masters: a reflective narrative of reconciling the tensions faced in designing doctoral research

This paper presents a reflective narrative of the process of designing a PhD project. Using the analogy of the play 'One Man, Two Guvnors' , this paper discusses the tensions a beginning researcher faces in reconciling her own vision for a project with the academic demands of doctoral-level study. Focusing on an ethnographic study of a reading group for visually-impaired people, the paper explores how the researcher's developing understanding of the considerations necessary when working with disabled people impacted on the research design. In particular, it focuses on the conflict faced by doctoral students when working in a paradigm that requires actively involving research participants, thereby relinquishing some control over the project. The aim of the paper is to provide an honest narrative that will resonate with other beginning researchers.

Deviant disabilities: the exclusion of drug and alcohol addiction from the Equality Act 2010

The Equality Act 2010, in keeping with the Disability Discrimination Act 1995, excludes those identified as drug and alcohol ‘addicted’ from the scope of provisions prohibiting discrimination against disabled people. This article addresses the significance of, and justification for, this exclusion. It begins with a legislative background to the relevant limitation and subsequently examines its rationale according to prevailing legal, medical and sociological discourses. The article then considers the relevance of the discussion for disability rights. Although ‘addiction’, or the preferred term, ‘substance dependence’, is classified as a disability for international systems of disease classification, the relevance of substance dependence for discussion on disability rights, and of disability for discussion on substance dependence, has largely escaped critical comment.

Factors contributing to fecal incontinence in older people and outcome of routine management in home, hospital and nursing home settings

Objective: Fecal loading, cognitive impairment, loose stools, functional disability, comorbidity and anorectal incontinence are recognized as factors contributing to loss of fecal continence in older adults. The objective of this project was to assess the relative distribution of these factors in a variety of settings along with the outcome of usual management. Methods: One hundred and twenty adults aged 65 years and over with fecal incontinence recruited by convenience sampling from four different settings were studied. They were either living at home or in a nursing home or receiving care on an acute or rehabilitation elderly care ward. A structured questionnaire was used to elicit which factors associated with fecal incontinence were present from subjects who had given written informed consent or for whom assent for inclusion in the study had been obtained. Results: Fecal loading (Homes 6 [20%]; Acute care wards 17 [57%]; Rehabilitation wards 19 [63%]; Nursing homes 21 [70%]) and functional disability (Homes 5 [17%]; Acute care wards 25 [83%]; Rehabilitation wards 25 [83%]; Nursing homes 20 [67%]) were significantly more prevalent in the hospital and nursing home settings than in those living at home (P < 0.01). Loose stools were more prevalent in the hospital setting than in the other settings (Homes 11 [37%]; Acute care wards 20 [67%]; Rehabilitation wards 17 [57%]; Nursing homes 6 [20%]) (P < 0.01). Cognitive impairment was significantly more common in the nursing home than in the other settings (Nursing homes 26 [87%], Homes 5 [17%], Acute care wards 13 [43%], Rehabilitation wards 14 [47%]) (P < 0.01). Loose stools were the most prevalent factor present at baseline in 13 of the 19 (68%) subjects whose fecal incontinence had resolved at 3 months. Conclusion: The distribution of the factors contributing to fecal incontinence in older people living at home differs from those cared for in nursing home and hospital wards settings. These differences need to be borne in mind when assessing people in different settings. Management appears to result in a cure for those who are not significantly disabled with loose stools as a cause for their fecal incontinence, but this would need to be confirmed by further research.

iPad use in fieldwork: formal and informal use to enhance pedagogical practice in a bring your own technology world

We report on use of iPads (and other IOS devices) for student fieldwork use and as electronic field notebooks and to promote active. We have used questionnaires and interviews of tutors and students to elicit their views and technology and iPad use for fieldwork. There is some reluctance for academic staff to relinquish paper notebooks for iPad use, whether in the classroom or on fieldwork, as well as use them for observational and measurement purposes. Students too are largely unaware of the potential of iPads for enhancing fieldwork. Apps can be configured for a wide variety of specific uses that make iPads useful for educational as well as social uses. Such abilities should be used to enhance existing practice as well as make new functionality. For example, for disabled students who find it difficult to use conventional note taking. iPads can be used to develop student self-directed learning and for group contributions. The technology becomes part of the students’ personal learning environments as well as at the heart of their knowledge spaces – academic and social. This blurring of boundaries is due to iPads’ usability to cultivate field use, instruction, assessment and feedback processes. iPads can become field microscopes and entries to citizen science and we see the iPad as the main ‘computing’ device for students in the near future. As part of the Bring Your Own Technology/Device (BYOD) the iPad has much to offer although, both staff and students need to be guided in the most effective use for self-directed education via development of Personal Learning Environments. A more student-oriented pedagogy is suggested to correspond to the increasing use of tablet technologies by students

Reading together: an ethnographic study of a reading group for visually-impaired people

Because reading groups historically have been under-researched (Long, 2003), the literature in this field is limited, presenting this as an interesting area for researchers. A need for further research is also explained by the fact that the traditional model of a reading group has been expanded through recent library policies leading to the development of specific group types such as groups for visually-impaired people (VIPs). To date, there have been no long-term empirical studies of these groups. This thesis, therefore, makes a significant contribution to the literature in this field by providing an in-depth exploration of a VIP reading group. The thesis is an ethnographic study which follows a library-run reading group for visually-impaired people from its formation in September 2007 and concentrates on five of the group members. The methodology for the study is influenced by participatory approaches to research involving disabled people by inviting the participants to participate in the co-creation of knowledge about themselves (French & Swain, 2000, p. 1). It is also influenced by new ethnography’s preference for multi-layered texts by exploring both the individual and collective experiences of the participants. While the participants are defined throughout as readers, visual-impairment plays a role in their experiences. I show that visually-impaired readers and reading groups sit within a complex web of factors which impact on their experiences both as individual readers and as a group. The study also shows that VIP reading groups challenge traditional definitions of reading as a visual activity. The study explores issues of power and concludes that, because ownership of the group lies with the library, this challenges the idea of reading groups empowering their members. Furthermore, offering discrete groups for visually-impaired readers means that the role these groups play in contributing to agendas for social inclusion is problematic. The study concludes by making suggestions as to how these groups might develop to be more inclusive and empowering.

Caring responsibilities, change and transitions in young people's family lives in Zambia

Despite diversity in family dynamics within and between societies, globally, it is adults who are usually relied upon to care for family members who are sick, disabled or have other care needs. Young people in Zambia and other African countries affected by the HIV epidemic are under increasing pressure to obtain a good education and employment to support their families, whilst some also have to cope with the loss of parents and care for relatives with little external support. This article discusses the findings of qualitative research that explored the experiences of young people (aged 14-30) who had significant family caring responsibilities and those without such responsibilities in Zambia. Interviews and life-mapping methods were conducted with a total of 35 young people living in rural and urban areas, 12 parents and relatives and 12 professionals. We analyse young people's experiences and perceptions of socially expected transitions, such as completing education and earning an income to support themselves and their families, in addition to more unpredictable changes in young people's family lives. ‘Critical moments’ (Thomson et al, 2002), such as bereavement and loss of parents and other family members, disinheritance of assets and property grabbing, migration and mobility between different relatives homes, parental divorce and separation, often had significant impacts on young people’s ability to navigate their pathways to adulthood according to wider social norms and expectations. A more relational conceptualisation of youth transitions is needed that takes account of young people's caring responsibilities and changing family dynamics.

Non-visual and multisensory BCI systems: present and future

During the past decade, brain–computer interfaces (BCIs) have rapidly developed, both in technological and application domains. However, most of these interfaces rely on the visual modality. Only some research groups have been studying non-visual BCIs, primarily based on auditory and, sometimes, on somatosensory signals. These non-visual BCI approaches are especially useful for severely disabled patients with poor vision. From a broader perspective, multisensory BCIs may offer more versatile and user-friendly paradigms for control and feedback. This chapter describes current systems that are used within auditory and somatosensory BCI research. Four categories of noninvasive BCI paradigms are employed: (1) P300 evoked potentials, (2) steady-state evoked potentials, (3) slow cortical potentials, and (4) mental tasks. Comparing visual and non-visual BCIs, we propose and discuss different possible multisensory combinations, as well as their pros and cons. We conclude by discussing potential future research directions of multisensory BCIs and related research questions

Care, disability and HIV in Africa: diverging or interconnected concepts and practices?

Recent research and policy have recognised the central role of unpaid care-givers (often women and girls) in the global South. Disability rights perspectives, however, challenge the language of ‘care’ and ‘dependence’. Drawing on qualitative research with women living with HIV and children caring for them in Tanzania, and on learning from the National Community of Women Living with HIV and AIDS in Uganda (NACWOLA), this paper explores the divergences and interconnections between the concepts and practices of care, disability and HIV in the context of East Africa. Despite the development of interdependent caring relations, both care-givers and people living with HIV in Tanzania experience ‘diminished autonomy’. The participation of people living with HIV, including disabled people, in home-based care and in peer support groups, however, can enhance ‘relational autonomy’ for both care-givers and care-recipients. We reflect on opportunities and challenges for mutual learning and cross-movement advocacy by disabled people, people living with HIV and care-givers.

Gueules cassées: the men behind the masks

Facially wounded soldiers of the First World War were, despite progress in plastic surgery, a particularly uncomfortable presence in war and post-war societies. Their self-perception and relationships with others are indicative of political, social, and emotional issues. Their treatment was not on a par with that of other veterans. In some instances, masks and attachments were used to cover the damaged features. They protected both the victim and the onlooker (i.e. society). This article analyses the practical and symbolic functions of masks in France and Great Britain. Drawing upon both artistic representations and historical documents, I argue that ultimately, what is perceived as an alien object is not the mask but the face behind it, and therewith the uncomfortable memory of the war itself.

Looking back, moving forward: drama, disability and social justice

The aim of this chapter is to briefly outline how disability has been represented in theatre, what access disabled people have had to drama and theatre in the past, and what might be achieved in the pursuit of social justice with young people in relation to awareness of and provision for disability. It will focus in particular on how disability has been addressed in drama education and what assumptions have been made regarding drama and disability in education. In considering such issues one might perceive manifestations of what Freebody and Finneran (2013) recognise as an overlapping and ‘somewhat artificially created dichotomy between drama for social justice and drama about social justice.’ This chapter will examine some examples of how drama has been used to give students in mainstream schools insights into disability, and the philosophy that underpins the drama curriculum of one special school where the focus is on drama as social justice: the argument being that in some cases simply doing drama is, in effect, a manifestation of social justice. Finally, some of the progress made in recent years regarding access and engagement will be addressed through specific reference to the authors’ on-going work into ‘performing social research’ (Shah, 2013) and how theatres are increasingly attempting to give more access to disabled young people and their families by offering ‘relaxed performances.’

Consulting young children about barriers and supports to learning

From consideration of children's rights in general and equal opportunities for disabled children in particular, it is important to consult children about barriers and supports to learning and participation. Finding appropriate and feasible ways, however, to incorporate this into educational programmes for younger children can present challenges. Here we report on what happened when teachers from reception classes in England for children aged 4–5 years implemented activities designed to access pupils' views about what helps or hinders at school. Teachers evaluated the feasibility and usefulness of the activities and, together with a small sample of children's responses, this showed that young children could indeed identify aspects of school life they like or dislike, laying the foundations for identifying barriers and supports to learning. Teachers' responses highlighted the importance of careful choice of activity to meet the needs of young children, particularly those with communication difficulties and/or low self-confidence, with staff in some cases adapting and merging activities to suit pupils' needs. Sensitive issues emerged concerning the introduction of consultation activities early in children's school careers. The implications of a compliant rather than collaborative approach by teachers are discussed in the context of children's right to have their views heard, and their developing understanding of difference.

Be careful how you ask! Using focus groups and nominal group technique to explore the barriers to learning

Schools have a legal duty to make reasonable adjustments for disabled pupils who experience barriers to learning. Inclusive approaches to data collection ensure that the needs of all children who are struggling are not overlooked. However, it is important that the methods promote sustained reflection on the part of all children, do not inadvertently accentuate differences between pupils, and do not allow individual needs to go unrecognized. This paper examines more closely the processes involved in using Nominal Group Technique to collect the views of children with and without a disability on the difficulties experienced in school. Data were collected on the process as well as the outcomes of using this technique to examine how pupil views are transformed from the individual to the collective, a process that involves making the private, public. Contrasts are drawn with questionnaire data, another method of data collection favoured by teachers. Although more time-efficient this can produce unclear and cursory responses. The views that surface from pupils need also to be seen within the context of the ways in which schools customize the data collection process and the ways in which the format and organization of the activity impact on the responses and responsiveness of the pupils.

Какую поддержку хотят родители для своих детей с ОВЗ

Schools in England (as elsewhere in Europe) have a duty to promote equality for disabled people and make reasonable adjustments for disabled children. This paper presents data drawn from a national questionnairedesigned for schools to use to identify their disabled pupils and examines in detail parental responses to a question on the kinds of support their child finds helpful in offsetting any difficulties they experience. It illustrates the complex and varied nature of the reasonable adjustments required and an overriding sense these need to be underpinned by the values of a responsive child centred approach, one that reflects parents’ knowledge and understanding of their child. Schools need to have in place the two way communication process that supports them in “knowing” about the visible and invisible challenges that disabled pupils face in participating in school life

Testing of disability identification tool for schools

There has been an ongoing concern about the lack of reliable data on disabled children in schools. To date there has been no consistent way of identifying and categorising disabilities. Schools in England are currentlyrequired to collect data on children with Special Educational Need (SEN), but this does not capture information about all disabled children. The lack of this information may seriously restrict capacity at all levels of policy and practice to understand and respond to the needs of disabled children and their families in line with Disability Discrimination Act (2005) and the single Equality Act (2010). The aim of the project was to test the draft tools for identifying disability and accompanying guidance in a sample of all types of maintained schools in order to assess their usability and reliability and whether they resulted in the generation of robust and consistent data that could reliably inform school returns for the annual School Census.

Disability data collection for children's services

Schools need to identify disabled pupils in accordance with their Disability Equality Duty. This research assisted in the development of suitable tools to allow them to identify disabled children in accordance with the definition set out in the Disability Discrimination Act (DDA) by surveying parents and, via the use of purpose-designed activities, the children themselves.