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Provocations for Critical Disability Studies

GOODLEY, Dan
LAWTHOM, Rebecca
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2019

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This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Disabled men with muscular dystrophy negotiate gender

ABBOTT, David
CARPENTER, John
GIBSON, Barbara E
HASTIE, Jon
JEPSON, Marcus
SMITH, Brett
2019

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Disability is often portrayed as a one-dimensional category devoid of further intersections. Work which has addressed the intersection of disability and male gender has rarely considered different types of disability or impairment, or foregrounded the experiences of disabled men themselves. This article is based on empirical work carried out in England with men who have Duchenne muscular dystrophy (DMD). We explored with participants their sense of themselves as men and their commonalities and differences with other men. Findings suggest that men with DMD claim, reject and redefine what it meant to them to be men. Doing gender was often heavily reliant on the availability and permission of others. Our study highlights the usefulness of exploring gender with men with particular experiences of disability and of looking at how this might change over a life course, especially when the nature and extent of the life course is a precarious one.

Views of children with cerebral palsy and their parents on the effectiveness and acceptability of intensive speech therapy

PENNINGTON, Lindsay
RAUCH, Rosie
SMITH, Johanna
BRITTAIN, Katie
March 2019

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Purpose: To understand children and parents’ views of the effectiveness and acceptability of intensive dysarthria therapy.

 

Materials and Methods: Twenty-two children with cerebral palsy and dysarthria joined a pilot RCT comparing intensive therapy and usual care. Children (n = 11) allocated to dysarthria therapy comprising three 40-minute sessions per week for six weeks and their parents (n = 11) were interviewed two weeks before and six weeks after therapy. Interviews were transcribed verbatim and analysed thematically.

 

Results: Analysis revealed five themes: Motivations, My new voice; The new me; I can do more; Success rooted in therapy design. Children had received little therapy for speech and were keen to improve intelligibility. Overall, therapy was viewed as effective. Participants described changes in children’s speech production, which they associated with increased speech intelligibility. Children were described as more confident following the therapy, to have more successful conversations, with a wider range of partners in more environments, thereby increasing their social participation. The programme was viewed as acceptable, despite its intensity, due to the short term commitment and wider benefits for the child. Parents valued the organised structure and individualisation of the programme and inclusion in the therapy process.

 

Conclusion: Families found the intervention acceptable and effective. A definitive trial of its clinical effectiveness is warranted.

Reimagining the workplace: disability and inclusive employment

LEONARD CHESHIRE
February 2019

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This UK based report examines the challenges and barriers facing disabled people throughout their working journey, as well as considering solutions to some of the key issues. Through our own research survey and interviews we look at the impact on disabled people where they cannot access adequate support as well as what works in improving their employment prospects

 

Topics discussed include: conditions of employment; preparing for work; falling out of work; and the performance of government based programmes.

 

ComRes interviewed in 2018 online 1,647 disabled adults in the UK, aged between 18 and 65, and in 2017 they interviewed 1,609 disabled adults. ComRes interviewed 503 UK line managers responsible for or involved in the recruitment process in 2018 and in 2017.  Between 1 December 2018 – 20 January 2019, Leonard Cheshire conducted in-depth telephone interviews with seven disabled people of working age about their experiences of employment. 

 

Recommendations are made throughout.

Development, reliability, and piloting of a wheelchair caster failure inspection tool (C-FIT)

MHATRE, Anand A
LACHELL, Stephanie
PEARLMAN, Jonathan L
2019

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Introduction: 

Wheelchair casters fail frequently in the field causing multiple user consequences and wheelchair breakdowns. To inform caster design improvement, there exists no validated tools that can collect caster failures. This need motivated the development of a user-reported, caster failure inspection tool (C-FIT).

 

Methods: 

To develop C-FIT, a multistep design and testing approach was used which included face validity testing, test-retest reliability testing and expert review. Reliability testing was conducted with two independent cohorts of wheelchair professionals who inspected caster failures physically and online through pictures. The tool was revised based on testing outcomes and expert feedback. For preliminary data collection and evaluating usability, C-FIT was piloted at wheelchair service centers in Scotland, Indonesia and Mexico.

 

Results: 

Caster failure items reported in the literature were screened to develop the initial list of C-FIT items. Face validity testing conducted through surveys with wheelchair experts (n = 6) provided 14 items for C-FIT inclusion. The test-retest reliability was found to be high for 10 items with physical failure inspections (n = 12). For each of these items, 75% or more participants had substantial to almost perfect agreement scores (κ = 0.6–1.0). Lower reliability scores were found with online failure inspections (n = 11). C-FIT received positive usability feedback from study participants and data collectors in the field. Pilot field data (n = 31) included comprehensive details about failures useful for manufacturers, designers and researchers to improve caster designs.

Conclusions: 

The C-FIT tool developed in this study has substantial reliability and can be used for documenting caster failures at wheelchair service centers.

Funding and inclusion in higher education institutions for students with disabilities

CHIWANDIRE, Desiree
VINCENT, Louise
2019

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Background: Historically, challenges faced by students with disabilities (SWDs) in accessing higher education institutions (HEIs) were attributed to limited public funding. The introduction of progressive funding models such as disability scholarships served to widen access to, and participation in, higher education for SWDs. However, recent years have seen these advances threatened by funding cuts and privatisation in higher education.

 

Objectives: In this article, the funding mechanisms of selected developed and developing democratic countries including the United Kingdom, the United States, Canada, Australia, South Africa and India are described in order to gain an insight into how such mechanisms enhance access, equal participation, retention, success and equality of outcome for SWDs. The countries selected are often spoken about as exemplars of best practices in relation to widening access and opportunities for SWDs through government mandated funding mechanisms. Method: A critical literature review of the sample countries’ funding mechanisms governing SWDs in higher education and other relevant government documents; secondary academic literature on disability funding; online sources including University World News, University Affairs, newspaper articles, newsletters, literature from bodies such as the Organisation for Economic Co-operation and Development, Disabled World and Parliamentary Monitoring Group. Data were analysed using a theoretically derived directed qualitative content analysis.

 

Results: Barriers which place SWDs at a substantial educational disadvantage compared to their non-disabled peers include bureaucratisation of application processes, cuts in disability funding, means-test requirements, minimal scholarships for supporting part-time and distance learning for SWDs and inadequate financial support to meet the day-to-day costs that arise as a result of disability.

 

Conclusion: Although the steady increase of SWDs accessing HEIs of the sampled countries have been attributed to supportive disability funding policies, notable is the fact that these students are still confronted by insurmountable disability funding-oriented barriers. Thus, we recommend the need for these HEIs to address these challenges as a matter of urgency if they are to respect the rights of SWDs as well as provide them with an enabling environment to succeed academically.

 

African Journal of Disability, Vol 8, 2019

Living with Ménière’s disease: an interpretative phenomenological analysis

KAUR TALEWAR, Kulvinder
CASSIDY, Elizabeth
MCINTYRE, Anne
January 2019

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Purpose: To explore the meanings of Ménière’s disease from the perspective of people living with this condition and to understand what was considered significant and important in participants’ everyday lives.

 

Materials and methods: Four women with Ménière’s disease participated in face-to-face semi-structured interviews. Accounts were recorded, transcribed, and analysed using an iterative process integral to Interpretative Phenomenological Analysis.

 

Results: Three interconnected themes were identified. “You have no control whatsoever” conveys participants’ perceptions of vertigo as having a disruptive and ongoing impact on physical and psychosocial function in everyday life. “Ménière’s takes away your life completely” describes Ménière’s as impinging on participants’ most meaningful activities and relationships, and as restricting their ability to live their lives on their own terms. “You get on with life” recounts participants’ efforts to refashion their lives whilst living with this condition and manage its most harmful effects. The psychosocial impact of living with Ménière’s disease and its relevance to rehabilitation is discussed.

 

Conclusions: Ménière’s disease has an enduring physical and psychosocial impact. Clinicians who acknowledge and respond to an individual’s subjective experience of their condition may be key to their engagement in therapy. Service users should have a voice in health service design and delivery.

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

MALLI, Melina Aikaterini
SAMS, Lara
FORRESTER-JONES, Rachel
MURPHY, Glynis
HENWOOD, Melanie
2018

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The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learn- ing disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well- being both of people with LD and their informal carers. Individuals with LD have lost social support and are experi- encing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for fur- ther discourse and research on the effects of austerity on people with LD and their family carers.

Older adults’ perceptions of wearable technology hip protectors: implications for further research and development strategies

HALL, Alex
BOULTON, Elisabeth
STANMORE, Emma
2018

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Purpose: 

Hip fractures are an important public health issue. Ninety-five percent of hip fractures are caused by falls, with those at greatest risk including residents of long-term care facilities. Hip protectors can be effective in preventing hip fractures, but levels of acceptance and adherence may be low. We report on work to develop research into a new hip protector that aims to overcome some of the acceptance and adherence challenges.

 

Methods: 

We held five patient and public consultation events involving 147 older adults and 10 long-term care sector staff in the Midlands and North West of England. At each event, participants were shown the Fall-Safe Assist hip protector, which includes built-in mobile technology to record information about falls and summon help from caregivers.

 

Results: 

Participants were positive about the product’s potential utility and impact upon confidence in moving around. However, many participants held highly personal perceptions of their vulnerability and need, and expressed concerns about the esthetics and practicality of the accompanying underwear. Participants highlighted potential challenges from poor mobile connectivity, and expressed concerns about product cost.

 

Conclusions:

 Future research will need to ensure flexible and sensitive approaches to recruitment. Further refinement to the product design may be useful. Individual interviews and questionnaires would help capture participants’ perceptions on personal topics, and measures of changes in confidence. Research sites will need to be compatible with technological functionality. It will be necessary to have a robust protocol in place for withdrawal of the product at the end of any clinical research.

Kinect4FOG: monitoring and improving mobility in people with Parkinson’s using a novel system incorporating the Microsoft Kinect v2

AMINI, Amin
BANITSAS, Konstantinos
YOUNG, William R
2018

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Parkinson’s is a neurodegenerative condition associated with several motor symptoms including tremors and slowness of movement. Freezing of gait (FOG); the sensation of one’s feet being “glued” to the floor, is one of the most debilitating symptoms associated with advanced Parkinson’s. FOG not only contributes to falls and related injuries, but also compromises quality of life as people often avoid engaging in functional daily activities both inside and outside the home. In the current study, we describe a novel system designed to detect FOG and falling in people with Parkinson’s (PwP) as well as monitoring and improving their mobility using laser-based visual cues cast by an automated laser system. The system utilizes a RGB-D sensor based on Microsoft Kinect v2 and a laser casting system consisting of two servo motors and an Arduino microcontroller. This system was evaluated by 15 PwP with FOG. Here, we present details of the system along with a summary of feedback provided by PwP. Despite limitations regarding its outdoor use, feedback was very positive in terms of domestic usability and convenience, where 12/15 PwP showed interest in installing and using the system at their homes.

Disability and vocational rehabilitation in rural settings

HARLEY, Debra
et al
2018

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A graduate student textbook offered in 39 chapters, each with different authors and subjects. Abstracts, test questions and citations are freely available on-line. Full text is charged for. The book surveys rehabilitation and vocational programs aiding persons with disabilities in remote and developing areas in the U.S. and abroad. Contributors discuss longstanding challenges to these communities, most notably economic and environmental obstacles and ongoing barriers to service delivery, as well as their resilience and strengths. Considerations are largely of the US but there is a chapter on each of Asia and Pacific region, Australasia, Canada, Mexico, India, Turkey, Colombia and the UK. 

 

Disability, CBR & Inclusive Development (DCID), 2018, Vol. 29, No. 1

2018

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Research papers in this journal issue are:

  1. Anticipated Barriers to Implementation of Community-Based Rehabilitation in Ribeirão Preto, Brazil
  2. Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia
  3. Utilisation and Satisfaction with Health Services among Persons with Disabilities in Accra, Ghana

 

Brief reports are:

  1. Predictors in the Selection of an AAC system: An Evidence-based Report on Overcoming Challenges
  2. Negotiating Future Uncertainty: Concerns of Mothers of Children with Down Syndrome in Kashmir, India
  3. Competencies of Students with Visual Impairment in using the White Cane in their Learning Environment: a Case Study at Wenchi Senior High in Ghana
  4. Teacher Trainees’ Perceptions of Inclusion of and its Challenges

Studying in UK as a disabled student

2018

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A brief introduction is provided about being a person with disabilities and a student in the UK. Information is given on rights, University’s office for disabled students, adjustments and scholarships and loans.

Disability and conditional social security benefits : Journal of Poverty and Social Justice, special issue, vol. 25, no.2, June 2017

GEIGER, Ben Baumberg
Ed
July 2017

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This special issue of the Journal of Poverty & Social Justice has two aims. Firstly to provide new evidence on the implementation and impacts of conditionality for disabled benefits claimants in order to provide an empirical foundation for the contested claims on both sides of this debate and secondly to prompt further research in this area. 

Article titles in this issue are:

  • Benefits conditionality for disabled people: stylised facts from a review of international evidence and practice
  • Does sanctioning disabled claimants of unemployment insurance increase labour market inactivity? An analysis of 346 British local authorities between 2009 and 2014 
  • Consequences of activation policy targeting young adults with health-related problems in Sweden and Denmark
  • Assessment of work ability in competing strands of social insurance: the German case 
  • Welfare conditionality and disabled people in the UK: claimants' perspectives
  • The bedroom tax in the Supreme Court: implications of the judgment 

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

Being disabled in Britain: a journey less equal

EQUALITY AND HUMAN RIGHTS COMMISSION
April 2017

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"Being disabled in Britain is a review into disability inequality in Great Britain. It builds on the Equality and Human Rights Commission’s statutory five-yearly report on equality and human rights progress in England, Scotland and Wales, Is Britain Fairer?.

We want this report to be used by UK and devolved governments to make improvements to law and policies, by local government to ensure services meet the needs of disabled people, and by disability groups to strengthen their case for change.

The report includes chapters on six areas of life, including education, work, health, justice and participation in politics, looking at where there has been progress and where there are still serious issues to be tackled. It also looks the experiences of those with different impairments and how these impact on people’s life chances"

Troubling school toilets: resisting discourses of ‘development’ through a critical disability studies and critical psychology lens

SLATER, Jen
JONES, Charlotte
PROCTER, Lisa
2017

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This paper interrogates how school toilets and ‘school readiness’ are used to assess children against developmental milestones. Such developmental norms both inform school toilet design and practice, and perpetuate normative discourses of childhood as middle-class, white, ‘able’, heteronormative, cissexist and inferior to adulthood. Critical psychology and critical disability studies frame our analysis of conversations from online practitioner forums. We show that school toilets and the norms and ideals of ‘toilet training’ act as one device for Othering those who do not fit into normative Western discourses of ‘childhood’. Furthermore, these idealised discourses of ‘childhood’ reify classed, racialised, gendered and dis/ablist binaries of good/bad parenting. We conclude by suggesting new methodological approaches to school toilet research which resist perpetuating developmental assumptions and prescriptions. In doing this, the paper is the first to explicitly bring school toilet research into the realms of critical psychology and critical disability studies.

Inclusive teaching and learning in higher education as a route to excellence

DISABLED STUDENTS SECTOR LEADERSHIP GROUP
LAYER, Geoff
January 2017

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The report encourages UK higher education providers (HEPs) to look at how they can support and offer the best environment for disabled students. It considers the requirement to provide ‘reasonable adjustments’ under the UK Equality Act 2010, and suggests actions to mitigate risks associated with that. It has been produced by the Disabled Student Sector Leadership Group, a sector-led group. 

DFE-00044-2017

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