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.

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.’

Disability [sport] and discourse: stories within the Paralympic legacy

This paper aims to encourage critical reflection on what are key and pressing social and political issues surrounding the Paralympics Games. The focus of the paper is personal narratives of six current elite Paralympic athletes who have participated in at least one Paralympic Games. In response to critical stimuli presented in the form of five ‘unfinished stories’, the self-reflexive, personal, compelling narrative reflections of these individuals were (re)presented for each of the stories as a composite narrative. The stories expose questions over fear, despair, freedom, hope, love, oppression, hatred, hurt, terror, (in)equality, peace, performance and impairment. To really learn from London and reflect for Rio, we need academic work that can understand sport, sporting bodies and physical activity as important ‘sites’ through which social forces, discourses, institutions and processes congregate, congeal and are contested in a manner that contributes to the shaping of human relations, subjectivities, and experiences in particular, contextually contingent ways.

The use and usefulness of a parent questionnaire to help schools identify disability

The Equality Act 2010 will be implemented in full in 2011, and schools in the UK will have to provide special aids or services for children with disabilities where this provision is considered reasonable. This paper reports on staff perspectives on the use and usefulness of a parental questionnaire on disability from a sample of 49 schools (mainstream and special) located in 12 local authorities. Most schools found the process of administering the parent questionnaire undemanding; just under half of the sample indicated that they would take some action as a result of the data collected from the parental questionnaire (e.g., to inform plans for targeting or monitoring support for children, and to contact parents and follow-up issues they had mentioned); and about one-third of schools recorded unanticipated findings from the parental questionnaire, that is, the identification of children whose disabilities were not previously known to the school. Implications for schools are discussed.

Collecting disability data from parents

This article describes the development and national trial of a methodology for collecting disability data directly from parents, enabling schools and local authorities to meet their obligations under the Disability Discrimination Act (DDA; 2005) to promote equality of opportunity for all children. It illustrates the complexities around collecting this information and also highlights the dangers of assuming that special educational needs (SENs) equate to disability. The parental survey revealed children with medical and mental health needs, but no SENs, who were unknown to schools. It also revealed children with a recorded SEN whose parents did not consider that they had a disability in line with the DDA definition. It identified a number of children whose disability leads to absences from school, making them vulnerable to underachievement. These findings highlight the importance of having appropriate tools with which to collect these data and developing procedures to support their effective use. We also draw attention to the contextual nature of children’s difficulties and the importance of retaining and respecting the place of subjective information. This is central to adopting a definition of disability that hinges on experience or impact.

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.

The recuperated materiality of disability and animal studies

This chapter considers a perhaps unexpected connection between disability and animal studies, given disability studies' understandable reluctance to be associated with animal liberation/rights struggles. It finds that both fields remain rooted in ideas of experience and feeling, or the notion of an essential embodied experience, even while they offer up critiques of the way essentialism operates more broadly to disenfranchise or disadvantage the groups they represent. The chapter goes on to analyse what the implications are of this notion of 'embodiment' and the materialism that accompanies it, it foregrounds the contradictions that ensue, and then discusses what this means for the way political action is (and can be) conceived of.

Physical disability, recent illnesses and health self-assessment in a population-based study in Sao Paulo, Brazil

Objectives. To investigate health self-assessment and to estimate the prevalence of chronic diseases and recent illnesses in people with and without physical disabilities (PD) in the state of Sao Paulo, southeastern Brazil. Study design. A Cross-sectional study comprising two population-based health surveys conducted in 2002 and 2003. Methods. A total of 8317 persons (165 with PD) were interviewed in the two studies. Variables concerning to health self-assessment; chronic disease and recent illness were compared in the people with and without PD. Negative binomial regression was used in the analysis. Results. Subjects with PD more often assessed their health as poor/very poor compared to non-disabled ones. They reported more illnesses in the 15 days prior to interview as well as more chronic diseases (skin conditions, anaemia, chronic kidney disease, stroke, depression/anxiety, migraine/headache, pulmonary diseases, hypertension, diabetes, arthritis/arthrosis/rheumatic conditions and heart disease). This higher disease prevalence can be either attributed to disability itself or be associated to gender, age and schooling. Conclusions. Subjects with PD had more recent illnesses and chronic diseases and poorer health self-assessment than non-disabled ones. Age, gender, schooling and disability have individual roles in disease development among disabled people.

UBE2A Deficiency Syndrome: Mild to Severe Intellectual Disability Accompanied by Seizures, Absent Speech, Urogenital, and Skin Anomalies in Male Patients

We describe three patients with a comparable deletion encompassing SLC25A43, SLC25A5, CXorf56, UBE2A, NKRF, and two non-coding RNA genes, U1 and LOC100303728. Moderate to severe intellectual disability (ID), psychomotor retardation, severely impaired/absent speech, seizures, and urogenital anomalies were present in all three patients. Facial dysmorphisms include ocular hypertelorism, synophrys, and a depressed nasal bridge. These clinical features overlap with those described in two patients from a family with a similar deletion at Xq24 that also includes UBE2A, and in several patients of Brazilian and Polish families with point mutations in UBE2A. Notably, all five patients with an Xq24 deletion have ventricular septal defects that are not present inpatients with a point mutation, which might be attributed to the deletion of SLC25A5. Taken together, the UBE2A deficiency syndrome in male patients with a mutation in or a deletion of UBE2A is characterized by ID, absent speech, seizures, urogenital anomalies, frequently including a small penis, and skin abnormalities, which include generalized hirsutism, low posterior hairline, myxedematous appearance, widely spaced nipples, and hair whorls. Facial dysmorphisms include a wide face, a depressed nasal bridge, a large mouth with downturned corners, thin vermilion, and a short, broad neck. (C) 2010 Wiley-Liss, Inc.