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This paper explores the Dementia Enquirers approach to dementia research, and the 10 local projects which have been funded in the first wave of the programme. The paper is written by six people with dementia with expertise by experience, supported by a traditional academic with expertise by research. This co-production enables the voices of people with dementia to be heard, and expands the field of disability studies. The authors discuss problems with traditional academic research, and the different ways that people with dementia go about research. Two examples of research projects led by people with dementia are discussed. The paper explores difficulties people with dementia have had with formal research ethics procedures and how they propose to do things differently. In conclusion, the authors challenge mainstream dementia research to do things differently, and to understand the potential contributions of people with dementia. People with dementia can conduct research People with dementia understand ethics and can come to considered judgements about capacity, consent and the risk of harm. People with dementia may sometimes enjoy advantages in their ways of working Mainstream research and research governance needs to adapt, if people with dementia are to be included. [ABSTRACT FROM AUTHOR]

The recognition of disability as a social construct has aided in providing better access to the built environment for disabled people, through the implementation of accessible spaces. However, access to them is not straightforward for disabled people who do not match stereotypical representations of disability. Drawing on empirical data collected from semi structured interviews and photo elicitation exercises, conducted with people with dwarfism living in the UK, this paper shows how they are often challenged or denied access to accessible spaces, creating a hierarchy of impairments. Building on the notion of 'statuarized spaces' the paper demonstrates how access to accessible spaces is influenced by their representation, which differs from representations of dwarfism, leading to incongruous encounters. These incongruous encounters affect the spatial practices of people with dwarfism. A more varied representation of disability is required in order to provide people with dwarfism straightforward access to accessible spaces. The ideas explored in this paper are based upon research carried out with people with dwarfism living in the UK. Shows how people with dwarfism are told off or challenged by other people when they want to access to accessible spaces. The paper shows some of the ways people with dwarfism gain access to accessible spaces. The paper argues for a broader representation of disability in order for people with dwarfism to be recognised as disabled. [ABSTRACT FROM AUTHOR]

In January 2006 New Labour published a Green Paper on welfare reform, A new deal for welfare: empowering people to work. Following a consultation period the 2006 Welfare Reform Bill was published in July 2006. The main concern of the Green Paper was with Incapacity Benefit and the people who claim it. This paper critically engages with the proposals outlined in the Green Paper and the subsequent Bill. Focusing upon the social security and labour market interventions of the proposals, the paper argues that rather than empowering disabled people to work, the relationships held to exist between welfare reform and paid employment in A new deal for welfare are likely to have a limited impact. The paper discusses why this is likely to be the case by examining assumptions contained in the proposals related to the reasons why people claim Incapacity Benefit, the model of disability that structures the proposals and the relationships between disability, paid work and models of family structure that the proposals presuppose. [ABSTRACT FROM AUTHOR]

Using an autoethnographic approach, this paper focuses upon interactions between ‘Paul’ (a pseudonym), whose symptoms associated with ‘severe learning difficulties’ are such that he is positioned on the low-functioning end of the autistic spectrum, his carers and others, in spaces taken for granted to be ‘public’ in both the United Kingdom and Hong Kong. This paper examines how social discourses relating to disability filter into social interactions, ultimately constructing the symptoms they purport to represent. This paper concludes by highlighting how interactions might be viewed as enabling rather than disabling, as producing spaces for thinking about the human condition. [ABSTRACT FROM AUTHOR]

This paper explores the experiences of students with chronic illnesses in UK universities. Sixty-seven students with chronic illnesses completed an online survey with open-ended questions about their experiences in higher education. Questions covered four main topics: academic work; university staff; social and extracurricular activities; and participants' miscellaneous opinions. Using thematic analysis, the data were analysed with references to the social model of disability and social representations of chronic illness. Participants wrote of misconceptions surrounding chronic illnesses, a sense of inequality, and feeling undervalued. Many staff members seemed to lack understanding and so 'policed' academic regulations rather than accommodating for their chronic illnesses. However, some participants wrote of social and academic 'allies' who offered understanding and proactive support. The findings add substance to the chronic illness literature with the focus on students at university, and we offer recommendations to universities for improving inclusivity for students with chronic illnesses. Disabled students with energy-limiting chronic illnesses are frustrated by a lack of support and feel that they have fewer opportunities than non-disabled students. Some university staff may hold negative views of disabled individuals, and so provide inadequate support. This can lead to students' reluctance to disclose chronic illnesses. Students with chronic illnesses felt that some staff and peers did not class chronic illnesses as 'real' disabilities and felt that they were perceived lesser than those with visible disabilities. Some students proudly owned the label of 'disabled' to educate others, including staff, who sometimes used university regulations inappropriately to excuse not adjusting support for disabled students. Some staff and students were perceived as supportive allies. Universities must listen to disabled students and those with chronic illnesses to ensure they fulfil their legal and moral obligations of providing equality of opportunity, enabling all students to succeed. [ABSTRACT FROM AUTHOR]

This article aims to advance knowledge of inclusive (social) citizenship, through an empirical analysis of the access work of persons with a dementia. Drawing on the notion of cognitive accessibility and empirical data collected in Southern England using a novel methodology of go-along walking interviews with 15 people with dementia followed by a sit-down interview that included a nominated family member, this paper examines how persons with dementia access the outside world. The study found that access work entailed three spheres of activity: 'access to location technologies', 'access to ordinary places', and 'consciously sharing the responsibility of access work'. Overall, this article contributes to the growing literature on cognitive accessibility by evidencing the mental demands of access work, as experienced by people with dementia, and need to share the responsibility of access work between humans and non-humans, and state and non-state actors. Access to the outside world is important for disabled people, including people with dementia. This study examined the outdoor experiences of 15 persons with dementia living at home in southern England, to find out what access means for someone with a neurological condition. This study found that access work involved 'access to location technologies', 'access to ordinary places', and 'consciously sharing the responsibility of access work'. The study shows how important it is to take account of cognition when promoting access rights for disabled people, including people with dementia. [ABSTRACT FROM AUTHOR]

The focus of this paper is to consider how disability studies and migration studies may be brought into further conversation with one another. While their experiences overlap and intersect in many ways, the lives of disabled people and migrants have rarely been considered together and this is an omission we address through a discussion on points of intersection and departure between migration studies and disability studies. We argue that migrants and disabled people are among the most marginalised individuals today whilst a Global North neoliberal rhetoric has pushed them further to the margins. We draw on Bauman's theorisation of 'wasted lives' to bring disability studies and migration studies in dialogue with one another. Through this analysis, we highlight how bringing both disciplines together may help to inform debates focused on social justice and rights to dignity for some of world's most marginalised communities. [ABSTRACT FROM AUTHOR]

This paper begins by giving a description of the relationship between austerity and the neoliberal policy focus on work in the UK, and how this impacts negatively on disabled people. It examines why Black disabled people's employment experiences have been missing in the literature despite the fact that they are more affected by austerity. Black disabled people's experiences in the job market tend to focus on racism and discrimination, whilst other struggles linked to disability, and what this implies for Black people, are poorly understood. A case study, of Black disabled workers, living with the sickle cell condition, is examined to comprehend why more nuanced intersectional research might be needed to understand why some Black people's experiences of employment remain invisible. While there has been a lot of attention on disability and impact of austerity and employment in the England, certain experiences have been missing in analysis. The study explains why Black disabled people's employment experiences are neglected in disability, ethnic minority as well as within employment research. Black people's experiences in the job market tend to focus on racist discrimination or identities, whilst other struggles linked to class, sexism and disability discrimination are poorly delineated. A case study of Black disabled workers with a genetic condition, sickle cell, is given to argue that more nuanced research is needed. [ABSTRACT FROM AUTHOR]

In October 2016 the newly appointed UK Secretary of State for Work and Pensions, Damian Green, announced that some disabled people receiving Employment and Support Allowance would not face reassessment for their financial support to continue. This article critically engages with this announcement in the context of the publication of Improving Lives. The Work, Health and Disability Green Paper shortly afterwards. [ABSTRACT FROM AUTHOR]

The Titles II and III of the Americans with Disabilities Act of 1990, building on the Section 504 of the Rehabilitation Act of 1973, have been relatively effective in securing enforceable civil rights for disabled students in higher education in the United States. In contrast, the Disability Discrimination Act of 1995 and any related previous pieces of legislation have persistently excluded these students in the United Kingdom, making, by default, any discrimination against them legal. However, the Government has started the legislative rule making process to include higher education under the new legislation, based on the final report of the Select Committee on Education and Employment of House of Commons and the final report of the Disability Rights Task Force. The paper argues that close examination of these reports as well as the Government's most recent consultation paper, 'Rights for Disabled People in Education', reveals a path which is unlike the path that followed during the rulemaking process leading to the Americans with Disabilities Act of 1990. In other words, it is likely that disabled students would continue to be subjected to potential discrimination despite the inclusion of higher education under the new proposed legislation and despite special disability funding provided to universities for disabled students. Disability civil rights advocates have an important role to play in the current rule-making process to create enforceable civil rights for disabled students in higher education. [ABSTRACT FROM AUTHOR]

This short paper calls for greater awareness of disabled refugees and asylum seekers living in Britain. Currently, policy makers, many refugee communities and the disability movement fail to consider disabled refugees and asylum seekers, perhaps because they constitute a minority about whom data are rarely available. Focussing on the particular combination of circumstances affecting disabled refugees and asylum seekers, this paper presents recent changes in support arrangements for refugees and asylum seekers. The paper also calls for greater involvement in refugee issues by the disability movement. [ABSTRACT FROM AUTHOR]

This small-scale unfunded work considers what universities might do better in relation to the employment of autistic researchers and/or lecturers. It is informed by questionnaire responses from twelve UK-based autistic academics. Autistic colleagues were involved in the development of this paper, but it is authored by a non-autistic neurodivergent academic ally. Allyship is demonstrated in working alongside, rather than taking over from, autistic scholars with a view to contributing to improving their working conditions. Information was gathered in 2019 before the global pandemic. Thematic analysis of first-hand testimony underpinned by information from published sources revealed overarching themes. These point to obstacles to secure employment in higher education at every stage, from financing doctoral study, to recruitment practices, to navigating bureaucracy. Structures that are notionally designed to help appear somewhat impenetrable. Attitudinal barriers compound practical difficulties, whereas supportive cultures and practices reduce obstacles. Autistic scholars are networking through grassroots organisations such as PARC but have limited power to affect changes which would move the sector closer to compliance with the Equality Act (2010). Autistic scholars with doctorates, peer reviewed publications and research skills reported difficulties in securing and maintaining UK university employment which is a good match with their proven abilities. Practical, structural and attitudinal obstacles to flourishing in the academy were evident in the accounts of autistic academics. The term 'ableism' can be applied to systems rooted in the idea that there is a way of 'performing' employment and any variance is somehow less acceptable. Autistic scholars have much to offer academia and ableism can get in their way. Autistic-led initiatives such as the (unfunded) Participatory Autism Research Collective (PARC) provide some sort of grassroots supportive infrastructure for autistic academics. A supportive Universal Design (UD) informed approach to employment nurtures diversity. Universal Design is in keeping with expectations around non-discriminatory employment placed on universities by the Equality Act 2010 and has the potential to benefit a wide range of marginalised scholars. [ABSTRACT FROM AUTHOR]

This paper focuses on the experiences of disabled people in the UK assigned to the Employment and Support Allowance Work Related Activity Group. Specifically, it considers the impact of processes of conditionality and sanctions on this group. The research was designed, conducted and analysed collaboratively between a disabled people's user-led organisation (DPULO) and an academic team. The research documents the negative impact that processes of conditionality and sanctions had upon participants. The results highlighted 3 main themes: a lack of equality between disabled claimants and other claimants; significant impact of issues of compliance within a regime that imposes conditions and sanctions; and alternative ways of experiencing and responding to this policy regime. Suggestions are made as to how to involve disabled people in decision-making at policy level to ensure that such conditionality and sanctioning are not used when there is clear evidence that highlights the damaging and detrimental effects of these processes. This research looks at how changes to welfare support in the UK have had a negative impact upon the health and wellbeing of disabled people. The research found that processes of sanctions on welfare payments were ineffective in getting disabled people to engage in work-related activity. Instead they create a range of punishing conditions that are often negative to health. The impact of sanctions was life threatening for some participants. The underlying fear instilled by the threat of sanctions meant many participants described living in a state of constant anxiety. This did not enable people to engage in work related activity. Participants described camaraderie in relationships of mutual support to be helpful in counteracting the negative impacts of sanctions. These findings are of particular relevance for the expansion of business models of welfare across a number of international policy settings. This research recommends more active engagement between welfare system researchers, government and Disabled People User Led Organisations (DPULOs) to develop alternative ways of engaging Disabled people in work related activity. [ABSTRACT FROM AUTHOR]

This paper examines the impact of major social security reform on mental health claimants by analysing the transition to Personal Independence Payment in the UK. Personal Independence Payment was introduced in April 2013, replacing Disability Living Allowance as the main non-means tested disability benefit intended to assist with the additional costs associated with disability or long-term health conditions. It is important to gain a better understanding of how people with mental health problems have experienced this reform. Twelve service users were interviewed for this qualitative research. Analysis identified three main themes: problems with the Personal Independence Payment claims process; problems conveying mental health problems during the assessment process; and positive experiences associated with the transition to Personal Independence Payment. This research demonstrates that major changes in benefit policy are challenging for people with mental health problems, particularly when delivered in a climate of austerity. The UK Government has changed the main disability benefit for disabled adults. From April 2013, Disability Living Allowance (DLA) has been phased out and replaced by Personal Independence Payment (PIP). This research found that this significant change caused difficulties for people with mental health problems. Everyone who took part reported increased anxiety, problems with claiming PIP, communicating with benefit officials and the medical assessment. It is important to learn from these problems so that future benefit changes, both in the UK and in other countries, can be developed and rolled-out in ways which are more appropriate for people with mental health problems. [ABSTRACT FROM AUTHOR]

This paper reports the part findings of an evaluation of a dual-screen installation entitled ‘Resistance: Which Way the Future?’ by the writer and director Liz Crow. Central to the installation is the experience of disabled people during the Holocaust period, the values underpinning this neglected period of history and how this relates to understanding the experiences of disabled people today. Simultaneously, this paper raises issue with a previous comment which suggested that disabled people and eugenics are a form of ‘emotive rhetoric’. On the contrary, this paper asserts that the link between eugenics and disability cannot be overstated, and is a significant moment in history where the lived experiences of disabled people – people described as having ‘learning difficulties’, surviving artefacts, and recorded testimonies – have still yet to be explored. [ABSTRACT FROM PUBLISHER]

This paper reviews the history of sterilization of women with intellectual disabilities, and considers its relevance to current practice regarding reproductive choice and futures. The paper provides an overview of published research on historical practices, focusing on the United Kingdom, the United States, Canada and the Nordic countries. Most of this research draws upon written records, centring on eugenics debates. However, emerging oral history testimonies gathered by the authors suggest that sterilization procedures were also conducted in the community, the result of private negotiations between parents and medical practitioners. The article presents these accounts and calls for an end to a ‘roaring silence’ on this issue. More empirical studies are needed to recover the experiences of women who have been sterilized and to explore how decisions about reproductive choice and capacity were made in the past and continue to be made today. [ABSTRACT FROM PUBLISHER]

Despite the UK's recent history of promoting the social inclusion and equality of men and women with learning disabilities they remain a significantly disadvantaged group. Compared with their non-disabled peers they are more likely to be unemployed, less likely to own their own homes and are at a significantly greater risk of physical and mental ill health. The first part of this paper discusses the welfare rights of citizens with learning disabilities in terms of New Labour's welfare to work policies. The second part discusses the UK's mixed welfare economy and its impact upon services for men and women with learning disabilities. The paper concludes by considering whether the social inclusion of men and women with learning disabilities can be promoted solely through policies that emphasise inclusion through work and the personalisation of welfare services. [ABSTRACT FROM AUTHOR]

This paper considers the contrasting ways in which disabled people seek to overturn socio-attitudinal, political and physical barriers to their mobility and access requirements in the built environment. In particular, the paper documents how disabled people are attempting to influence the form and content of local authority access practices and policies in the UK, through the context and contours of access groups. I begin by briefly outlining some of the key factors inhibiting and facilitating disabled people organising as effective political groupings, relating the material to access issues in the built environment. Then, using case studies of two contrasting access groups, the paper explores some of the practical barriers, problems and opportunities connected to disabled people's activities in seeking to influence local authority access policies and practices. I conclude by discussing how some of the wider structural and agency-level constraints on disabled people's political and policy interventions in access issues might be removed. [ABSTRACT FROM AUTHOR]

This paper is based upon ideas developed by the authors during their past 6 years work on issues of sexuality and sexual abuse in a wide variety of learning disability settings in Britain. The paper argues that some features of service design in themselves make sexual abuse more likely to occur. It suggests ways of reducing risk, which should work alongside the more usually suggested educative approaches to individuals and groups of vulnerable people. [ABSTRACT FROM AUTHOR]

There has been a distinct neglect of dis/ability in socio-cultural analysis of poverty porn. This paper applies framing analysis to reality TV documentaries that feature larger bodied, disabled, welfare claimants to examine how cultural literacies of fatness and 'obesity' are drawn upon to cast suspicion upon disability welfare claimants in so-called poverty-porn. With a focus on Channel 5's Benefit Britain series, Benefiits Too Fat to Work we demonstrate that enduring and harmful representations of 'obesity' are put to the work of securing public consent for a post-welfare society in the UK. [ABSTRACT FROM AUTHOR]

Research about disabled identity reflects diverse perspectives on the merits and challenges associated with such an identity. This paper explores the impact of disabled identity on the inclusion of disabled students in higher education and employment contexts. It considers their experiences of inclusion in a university setting and its associated work-based placements and discusses the extent to which students had to negotiate a range of experiences of disabled identity. The paper suggests that many disabled students, especially those with behaviour-related impairment labels, are subject to continued exclusion in university and, more particularly, work settings, and this contributes to an employment disadvantage compared with their peers. To this end, the paper highlights the importance of enhancing inclusion for disabled students, especially in employment settings, through a focus on reducing destructive identities. [ABSTRACT FROM AUTHOR]

This paper reports on an exploratory study of the role of solicitors acting for parents with intellectual disabilities (ID) in public law proceedings. The paper draws on in-depth interviews with 11 solicitors and a subsequent focus group in which the interview findings were presented and reflected on by six of the eleven participants. Two of the five themes that emerged will be discussed here. They are entitled ‘Attitudes and Influence’ and ‘Legal Processes’ and concern the attitudes and influence of those involved in assessing, supporting and representing parents with ID and the care proceedings processes encountered by parents with ID. [ABSTRACT FROM PUBLISHER]

Employment for people with learning difficulties is considered key to their social inclusion. This contradicts the perceived un-employability of people with learning difficulties that has been part of their social identities throughout their history hitherto. The national rate of employment for people with learning difficulties remains extremely low and has barely changed in the 20 years between 1990 and 2010. This paper investigates links between learning disabilities and employment, drawing on interview-based research. It analyses the quality of experience of the minority in employment to consider whether employment can serve the inclusive purpose expected of it. [ABSTRACT FROM AUTHOR]

UK governments since 1997 have introduced significant changes to move disabled people off benefits and into employment. Commentators have criticised the adoption of the ‘medical model’ of disability implicit in many of these policies, with its focus on individual rather than institutional change. This paper reports empirical data about participants’ experiences of one national supported employment programme. Participants of WORKSTEP were overwhelmingly positive about their experiences both of work and the support to find work. The rare reports of negative experiences reflect the focus on intervening at the level of individual workers, rather than the workplace or organisation of work. Analysis of their views is valuable in the light of ongoing welfare reform as well as recessionary pressures on labour markets and employment services, which, in emphasising individual solutions to employment problems, may overlook the need for more broad-based, social interventions. [ABSTRACT FROM PUBLISHER]

Produced and published by the coalition government, the publication of the 2014 Special Educational Needs and Disability Code of Practice: 0-25 years (2014 SENCoP) sets out to overhaul the management of special educational needs (SEN) provision across England and Wales. This paper employs a critical discourse analysis (CDA) of the 2014 SENCoP to reveal the ideologies and aims that this policy is built upon. Following a Foucauldian framework of governmentality, this article focuses upon the way in which 'a successful transition to adulthood' is constructed within the policy, particularly in relation to the wider Conservative narrative of a 'Big Society.' Developing this analysis, the article draws upon the current political landscape of a Conservative government and the shift towards the creation of a 'shared society' in attempt to locate 'adulthood' within its wider political, economic, and cultural context. This analysis reveals the neoliberal values underpinning the 2014 SENCoP, whereby educational support is reduced to the practice of shaping and sculpting the future generation of citizens. By deconstructing notions of employment, independence, participation, and health, this article reveals the 2014 SENCoP as a tool of government, written to the demands of the economy rather than the unique needs, aspirations, and ambitions of children and young people labelled with SEN. [ABSTRACT FROM AUTHOR]

Governments continue to face challenges in implementing effective strategies to increase social and economic participation of people with disabilities. In a recent OECD high-level policy forum on Sickness, Disability and Work, the main policy message was the need for a culture of inclusion; with a dual focus on short-term active policy interventions and long-term structural reform. This paper examines policies in liberal welfare states that encourage people receiving disability benefits to participate in the labor market. Examples from the United States, the United Kingdom and Australia of active labor market programs aimed at moving people with disabilities from workfare are analyzed in the context of international disability rights and neoliberal discourse. The paper explores the extent to which new approaches to activation policies are facilitating parity of participation and factors that impact the effectiveness of these policies. [ABSTRACT FROM AUTHOR]

The Government plans to introduce a new Commission for Equality and Human Rights (CEHR), covering disability, race, gender, sexual orientation, religion/belief and age. This presents both opportunities and risks for the achievement of disability equality. This paper analyses implications and proposes a long term disability rights agenda, geared to mainstreaming disability equality into the CEHR and major policy developments across Government. It suggests that the widest involvement of disabled people, policy makers and academics in the field of disability will be necessary to achieve this. The DRC will be very active in this work. [ABSTRACT FROM AUTHOR]

Between 6% and 16% of the working age population have a long term illness or disability. 'Disability' is nor consistently defined, however, and neither the distribution of disabled employees nor the nature of their disabilities is well documented. This paper presents the findings of a study of statutory social services employees in the UK and for the first rime provides an estimate of the proportion of workers with long term illnesses or disabilities. Over a fifth had a self-reported long term illness or disability, 8% a condition which affected daily life. The distribution and nature of these, and the effects of gender, age, occupational categories, and work experience such as job satisfaction, stress and sick leave, are examined. Changes in legislation and the profile of the working age population are likely to increase the number of people with disabilities in work. The paper concludes that at a time of difficulties with recruitment and retention, social services and other social care employers must develop a range of responses to support and retain the diversity of people with disabilities in work. [ABSTRACT FROM AUTHOR]

This paper provides a broad-based overview of the development of emancipatory disability research in the UK since its emergence in 1992. Drawing on personal experience in the field, the author responds to several important considerations that need to be addressed before considering adopting this controversial perspective. The paper is divided into two main sections. The first part provides a concise introduction to the thinking that underpins the concept of emancipatory disability research. The second section discusses key elements of this approach including the problem of accountability, the social model of disability, choice of methods and, enpowerment, dissemination and outcomes. The paper concludes by suggesting that whilst there has been considerable progress over the last decade the future of emancipatory disability research remains precarious. [ABSTRACT FROM AUTHOR]

In this paper we employ ethnographic data to illustrate that disabled children encounter discriminatory notions of 'normality' and 'difference' in both 'special' and 'mainstream' schools, and that these experiences relate to both the structural forces in schools, and the everyday individual and cultural practices of adults and children. In contrast to much of the literature in the field, this paper examines the everyday life experiences of adults and disabled children from their own perspective. We highlight disabled children's own criticisms of 'special' and 'mainstream' schools to illustrate the fluid nature of disabled children's lives within educational settings. We argue that schools will be prevented from becoming fully inclusive until adults who control schools take account of children's views of specific educational processes and until educational policy makers adopt a more nuanced multi-level approach to inclusion. Children should be enabled to challenge the structural, cultural and individual conditions which create disability. [ABSTRACT FROM AUTHOR]

This paper examines the relationship between Self Advocacy and the disability movement in Britain in the light of social movement theory. Using the concept of 'collective identity' as it is explored in social movement theory, the analysis examines why the disability movement's promotion of a strong disabled identity may be difficult to achieve for all its constituents, particularly people with learning difficulties. Additionally the concept of symbolic production within social movement theory is used to explore how the movement uses the social model of disability as its 'collective action frame'. It is argued realignment of this frame is taking place within the movement and is reflected in debates within Disability Studies about the role of impairment. The voices of people with learning difficulties remain silent in this debate. The paper concludes by arguing for the recognition of social, psychological and cognitive difference as pre-requisite to an inclusive theory and politics of disability. [ABSTRACT FROM AUTHOR]

This paper questions the usefulness of the rights-based approach to ameliorating the social situation of disabled people in Britain and advances two criticisms. First, that rights and self-defined needs have been under-theorised by disability theorists to the extent that they have insufficiently appreciated the problems that these approaches pose. The paper suggests that rights to appropriate resources to satisfy self-defined needs will generate vast numbers of competing rights claims and that the resulting tendency of rights to conflict has been under-appreciated. Secondly, that there has been little consideration of how these conflicts might be reconciled. The first two sections of the paper look at the concepts of ascribed and self-defined needs, respectively, whilst the final one looks at some of the problems of the rights approach and some of the difficulties of making self-defined need the basis of rights claims. [ABSTRACT FROM AUTHOR]

This paper uses personalisation and the capabilities approach to explore inclusive music classes for children with disabilities in Scotland. It provides a unique insight into the impact of participation through the voices of the disabled young musicians, their parents and tutors. The study highlights the power of inclusive spaces to transform lives, to build confidence and contest disabled identities. It engages in the spatial dynamic of opening up inclusive spaces, as well as exposing emerging tensions in the liminal space that is created through movement between safe and supported spaces and the antithesis, spaces that disempower and marginalise. The findings suggest good practice around personalisation, when conceived of from a social justice perspective, as a template for working with other marginalised groups and in other professional settings. [ABSTRACT FROM AUTHOR]

This paper discusses the introduction of telematics technologies, which are advancing rapidly in Britain and throughout the world, and which impact increasingly on the lives of disabled people. The authors argue that, to date, technology-based services have been largely, if not exclusively, determined by the interests of care service professionals, technologists and the commercial sector. Missing from the debate has been the perspective of the disability movement, which challenges professional hegemony, and introduces important issues such as choice, control and access to the wider environment. Such a perspective is needed if technological advances are to empower disabled people and not simply provide administrative solutions to the problems of increasingly hard-pressed service providers. [ABSTRACT FROM AUTHOR]

Although the community care reforms raised the profile of respire services for adults with learning disabilities, little is known about the character of respite provision in Britain. This lack of information is compounded by the way the literature about respite is dispersed across user groups and is often restricted to particular types of services or to specific localities. In order to highlight some of the key issues associated with respite, this paper draws on a wide range of literature. Regardless of differences in terms of the service user groups, common themes are identified which are relevant to service planning and provision for adults with learning disabilities. The paper discusses these themes and argues that a break with the traditional notion of respite as primarily a way to relieve carer burden is long overdue. Adopting the perspective of the primary service users affords the opportunity to re-think respite services. [ABSTRACT FROM AUTHOR]

This paper has two aims. First, it will summarise the findings of a study of the views and experiences of adults with acquired physical impairments. This entailed taking open-ended accounts from respondents in order to elicit their concerns and experiences. The paper will focus on two aspects of data from the study: views about health and social services; and those about citizenship. The second aim of the paper is to situate the role and status of personal accounts of disability within the health and social policy context of recent years, which has been characterised by both consumerism and an intensification in the activities of the disability movement, In the run up to the 1990 NHS and Community Care Act, it became clear that the purchasers (now 'commissioners') of health and social services would be encouraged to elicit users' views of services, to engender a needs-led not provider-led approach. Later in the paper we will discuss the relationship between this officially endorsed consumerism and the concerns of disabled people when voicing their views. It will be argued that personal accounts of disability have gained a cultural currency because of the convergence of processes linked to consumerism within recent British health and social policy on one side and new social movements on the other. [ABSTRACT FROM AUTHOR]

This paper traces the development of physiotherapy as a career for visually impaired people from the end of the 19th century until the present day; It is an aspect of the author's on-going PhD research into the employment situation of visually impaired physiotherapists. Visually impaired physiotherapy students were initially integrated with their sighted peers, but from 1915 their training was taken over by the Royal National Institute for the Blind within a segregated college. This arrangement lasted until 1992 when visually impaired students were accepted for training as physio therapists at the University of East London. This paper traces difficulties visually impaired people have experienced in their struggle for acceptance and survival within the physiotherapy profession, and the important influences, such as the First and Second World Wars and the development of the National Health Service, which has helped to shape their destiny. [ABSTRACT FROM AUTHOR]

The 1990 NHS and Community Care Act requires social services departments in Britain to involve representatives of service users in the preparation of their annual community care plans. This paper gives a critical account of the different ways in which the views of disabled people are sought and represented in community care planning; and of the organisational and practical barriers which disabled people and their organisations are likely to encounter in representing their views to service planners. People with learning disabilities, older disabled people, people with sensory impairments and disabled people from Black and ethnic minority communities are particularly likely to be excluded from current consultation procedures. The paper concludes that present methods of representation place considerable burdens on both individual disabled people and on their organisations. Consequently, disabled people may increasingly question the effectiveness and usefulness of their involvement in community care planning, in the light of the many other issues which are important to them. [ABSTRACT FROM AUTHOR]

The qualitative study presented in this paper explored the perspectives of service-users, family members and staff about the impact of travel issues on the lives of mental health in-patients and carers. This topic was chosen because it was prioritised by members of Xplore, a service-user and carer research group, and has received little research attention. Travel problems were a significant issue for many service-users and carers, bound-up with mental health issues and the recovery experience. Travel facilitation through the funding of taxis and the provision of guides was appreciated. A few service-users and carers positively valued distancing from their previous home environment. The meaning of travel issues could only be understood in the context of individuals’ wider lives and relationships. The significance of the findings is discussed in relation to the social model of disability. [ABSTRACT FROM AUTHOR]

This paper discusses the impact of neoliberalism on disability policy and activism. The paper highlights the neoliberalisation of postsocialist disability policy, as well as the convergence between the neoliberal critique of welfare-state paternalism and the advocacy of disabled people’s movement for deinstitutionalisation and direct payments (personal assistance). The discussion is supported by examples from Bulgaria and the United Kingdom. In conclusion, the paper argues that neoliberalism confronts the disabled people’s movement with two difficult tasks: to defend self-determination while criticising market-based individualism, and to defend the welfare state while criticising expert-based paternalism. [ABSTRACT FROM AUTHOR]

Adjustments to working arrangements and the working environment have enabled organisations to recruit and retain valuable staff and helped disabled individuals to work and progress in their careers. The qualitative study reported in this paper indicates that generally good adjustments-related practice across 33 British local authorities was beginning to deteriorate under the impact of government spending cuts; and was at further risk from the dismantling of legal protections. The findings have implications for local authorities, but also for national policy-makers and those wishing to influence them. [ABSTRACT FROM AUTHOR]

This paper draws on qualitative research with Incapacity Benefit (IB) stakeholders in the North East of England, UK. Stakeholders’ experiences of working with long-term sickness benefits recipients reveal multiple barriers that both sick and disabled people, and themselves as practitioners, clearly face. Reflections on what ongoing welfare reform could mean for future practice for both stakeholders and recipients will be explored. The findings suggests that whilst stakeholders recognise the complex barriers faced by those receiving sickness benefits, a wider moral dialogue between ‘deserving’ and ‘undeserving’ is being created and sustained as a result of negative stereotyping of sickness benefits recipients. [ABSTRACT FROM PUBLISHER]

This article documents the experience of people with myalgic encephalomyelitis (ME) in claiming sickness-related benefits in the United Kingdom. Based on responses to an enquiry on an email noticeboard, it focuses on the work and stress involved in making a claim; the felt stigma of being a claimant; and the strong desire to return to paid employment. The paper also notes the lack of documentation of the experience of making claims for, and of living as, a claimant of these benefits, and argues for the importance of research in this area, especially given that tightened criteria are currently generating even greater anxiety and risk of impoverishment. [ABSTRACT FROM AUTHOR]

The return of the Labour government to power in 1997 brought an increased focus upon inclusive education for children with special educational needs (SEN). Alongside this there has been a desire to enhance the opportunities young people have to access physical education (PE) and school sport. Previous research has shown that children with SEN often have fewer opportunities to access physical activity due to physical, social and emotional barriers to participation. With the advent of a new Con–Lib-Dem government in 2010 and a planned review of inclusion policies and practices, this paper examines the extent to which children with SEN have arrived at utopia in relation to their entitlement and access to PE. The paper identifies four themes central to successful inclusive PE, whilst suggesting there is still some way to go for children with SEN to have the same opportunities in physical activity as their non-disabled peers. [ABSTRACT FROM AUTHOR]

Hate crime is now an established term in the fields of racist and religious attacks and is acknowledged in the cultural proscription against attacks on lesbian, gay, bisexual and transgender men and women. Disabled people, as so often is the case, are late in being afforded statutory recognition in hate crime. This can be explained in terms of wider constructions of disability and more pernicious and muddled constructions of disabled people as categorically 'Vulnerable'. This construction has arguably weakened the impetus to introducing hate crime provisions and legal justice for disabled people. There is now ample evidence of hate crime being evident and pervasive in the lives of many disabled people. By drawing on two English studies of disablist hate crime, this paper draws out key aspects of hate crime policy and practice, and challenges the constructions of disability, hate and vulnerability currently operating. [ABSTRACT FROM AUTHOR]

Finding a way to pay service users for research involvement in the UK has become a topic of dispute and despair. By reviewing the available literature, this article aims to document the range of frustrations and to highlight this small area of policy as pivotal to improving research involvement for disabled people (and other service users). Policy papers, guidance notes, reports and papers on payment issues are summarised, examined and juxtaposed. We link the problems described to analytical debates about ethics, power, policy and emancipatory research. While resolution in all these areas is desirable, we show how pragmatic concerns are also important. Mechanisms for paying people are a core problem. They have been changed inconsistently and incrementally. An explicit focus on mechanisms would be a key next step towards improving opportunities for disabled people (and other service users) to be involved in research by, for and about themselves. [ABSTRACT FROM AUTHOR]

The Disabled People's Movement (DPM) in the UK rejects the view that disability is an illness. For the DPM it is the social processes of discrimination and oppression that create the material circumstances out of which solidarity and politicisation arise. The DPM has also been shy about impairment, arguing that it is generally irrelevant to the issue of disability and that a clear distinction between impairment and disability is necessary if disability is to be understood as a basis for identity politics. The biological citizens that support embodied health movements use impairment, genetic status, biomedical diagnosis and classification as calling cards that signal their claims to identity. Whilst the DPM has challenged medical hegemony and scientific ideas, many 'biosocial' groups embrace the specialised medical and scientific knowledge associated with their 'condition', particularly where it might be used to enhance their claims to citizenship. This paper argues that disability activism in the UK is bifurcating. It addresses the difference in perspective and action between the 'social model stalwarts' of the DPM and biological citizens that organise politically around particular diagnostic labels. [ABSTRACT FROM AUTHOR]

Although there is an increasing amount of literature on direct payments (DP), to date there have been few studies which have examined in any detail the costs and resources associated with them. This paper presents findings from a two year study conducted in two Welsh local authorities that jointly fund an Independent Living Support (ILS) scheme. The main study was not designed to provide definitive cost comparisons with conventional services, however, cost and resource implications of DP were considered and an analysis to determine comparative costs between DP and traditional services was undertaken. The study notes the difficulty in identifying the true cost of DP and reasonable comparators with traditional services. A set of four case studies are presented comparing actual costs of DP and in-house and independent sector services in the two local authorities studied. The comparison of costs and resources, which did not include significant costs for traditional local authority services but included the cost of the DP support scheme, found that DP was cheaper than traditional in-house service provision and relatively cost neutral when compared with independent sector provision. User satisfaction, however, was significantly greater with DP than traditional service delivery methods. The paper also examines factors which can potentially influence the cost of DP. The study suggests that DP represent a substantial improvement over traditional arrangements from a cost-benefit perspective. There is strong evidence to suggest that greater 'opportunity cost' savings can be anticipated when DP schemes become more fully integrated into policy, practice and procedures. [ABSTRACT FROM AUTHOR]

1997 saw the introduction of the Community Care (Direct Payments) Act in the UK. This piece of legislation introduced a mechanism that enabled local authorities to make cash payments to disabled people aged between 18 and 64 in lieu of directly provided services. The years since 1997 have seen the introduction of additional legislation resulting in direct payments now being an option for many more groups of people, including the carers of disabled children. Following the changes in the legislation, government now wishes to see local authorities significantly increasing the numbers of families that receive direct payments. This paper will report on a research project carried out within one local authority in the north-west of England that has one of the largest numbers of carers of disabled children receiving direct payments in the UK. Using a variety of methods this paper explores how the local authority has made direct payments so widely available to carers and the effect that this has had on their own and their children's lives. [ABSTRACT FROM AUTHOR]

The Chronic Disease Self-management Programme (CDSMP) is a psycho-educational programme designed to increase the capacity of people with chronic conditions to self-manage. This initiative forms an integral part of the 'Expert Patient Programme' in the UK and the 'Sharing Health Care' programme in Australia. The aim of this paper is to critically appraise the principles of the CDSMP as a national self-care policy initiative in the context of existing formations and ideological approaches to self-care. Although the CDSMP appears to promote a 'social model' of disability, particularly in its generic manifestation, the use of the notion of self-efficacy as a primary marker of change means that it ultimately falls back onto an individualistic approach. The latter ignores pre-existing traditions of self-help embedded within advanced welfare societies.. We argue that state sponsored polices about self-management would benefit from greater recognition of existing social knowledge and theories about how people respond to being diagnosed with a long-term condition. [ABSTRACT FROM AUTHOR]