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Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.

Disability and social justice

MLADENOV, Teodor
2016

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This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

Physical environments and community reintegration post stroke: qualitative insights from stroke clubs

BROOKFIELD, Katherine
MEAD, Gillian
2016

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This study investigated the environment’s role in community reintegration amongst persons with experience of stroke. Focus group discussions with 29 individuals recruited from community stroke clubs in Scotland revealed that stroke influenced a person’s perceptions, experience, use and enjoyment of the environment. Multiple specific (e.g. theatres, cafes) and more general (out-of-the- home) environments appeared capable of supporting community reintegration, providing settings in which individuals were able and willing to interact with others and participate in various functional, social and recreational activities. The article reflects on the study’s implications for policy and practice.

School toilets: queer, disabled bodies and gendered lessons of embodiment

SLATER, Jenny
JONES, Charlotte
PROCTER, Lisa
2016

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In this paper we argue that school toilets function as one civilising site [Elias, 1978. The Civilising Process. Oxford: Blackwell] in which children learn that disabled and queer bodies are out of place. This paper is the first to offer queer and crip perspectives on school toilets. The small body of existing school toilet literature generally works from a normative position which implicitly perpetuates dominant and oppressive ideals. We draw on data from Around the Toilet, a collaborative research project with queer, trans and disabled people (aroundthetoilet.wordpress.com) to critically interrogate this work. In doing this we consider ‘toilet training’ as a form of ‘civilisation’, that teaches lessons around identity, embodiment and ab/normal ways of being in the world. Furthermore, we show that ‘toilet training’ continues into adulthood, albeit in ways that are less easily identifiable than in the early years. We therefore call for a more critical, inclusive, and transformative approach to school toilet research.

Confessions of an inadequate researcher: space and supervision in research with learning disabled children

BENZON, Nadia von
2016

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Location is often at the fore of decision-making regarding fieldwork and choice of methods. However, little research has directly discussed the importance of the choice of site in the production of research data, particularly concerning the way that different relationships will manifest between researcher and participant in different spaces. Site may be particularly important in research with (learning disabled) children, as research location is intertwined with the level of caregiving required from the researcher, and the sorts of surveillance the research engagement may be subject to. This paper draws on research with learning disabled 6–16-year olds that took place in homes, schools and the outdoors, in a variety of microgeographical locations from bedrooms to nature reserves. This paper reflects on the challenges, including the very ‘worst’ research moments, occurring in the different research environments. Whilst the research was carried out with learning disabled children and young people, the discussion has implications for research with non-disabled children and ‘vulnerable’ participants more broadly.

Who cares about independence?

SHAKESPEARE Tom
September 2016

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Wheelchair user, Tom Shakespeare, reflects on what it feels like to be dependent on others.

He says care often leaves the recipient in a devalued state.

He calls for society to respond to the challenge of delivering help "without creating domination and infantilisation" and for care to be funded properly.

Producer: Adele Armstrong.

Development and functional demonstration of a wireless intraoral inductive tongue computer interface for severely disabled persons

STRUIJK, Lotte N S Andreasen
LONTIS, Eugen R
GAIHEDE, Michael
CALTENCO, Hector A
LUND, Morten Enemark
SCHIOELER, Henrik
BENTSEN, Bo
2016

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Purpose: Individuals with tetraplegia depend on alternative interfaces in order to control computers and other electronic equipment. Current interfaces are often limited in the number of available control commands, and may compromise the social identity of an individual due to their undesirable appearance. The purpose of this study was to implement an alternative computer interface, which was fully embedded into the oral cavity and which provided multiple control commands.

 

Methods: The development of a wireless, intraoral, inductive tongue computer was described. The interface encompassed a 10-key keypad area and a mouse pad area. This system was embedded wirelessly into the oral cavity of the user. The functionality of the system was demonstrated in two tetraplegic individuals and two able-bodied individuals

 

Results: The system was invisible during use and allowed the user to type on a computer using either the keypad area or the mouse pad. The maximal typing rate was 1.8 s for repetitively typing a correct character with the keypad area and 1.4 s for repetitively typing a correct character with the mouse pad area.

 

Conclusion: The results suggest that this inductive tongue computer interface provides an esthetically acceptable and functionally efficient environmental control for a severely disabled user.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

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Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

How are service users instructed to measure home furniture for provision of minor assistive devices?

ATWAL, Anita
MCINTYRE, Anne
SPILIOTOPOULOU, Georgia
MONEY, Arthur
PARASKEVOPULOS, Ioannis
2016

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Purpose: Measurements play a vital role in providing devices that meet the individual needs of users. There is increasing evidence of devices being abandoned. The reasons for this are complex but one key factor that plays a role in non-use of equipment is the lack of fit between the device, environment and person. In addition, the abandonment of devices can be seen as a waste of public money. The aim of this paper is to examine the type, the readability, and the content of existing guidance in relation to measuring home furniture.

 

Method: An online national survey involving health and social care trusts in the UK. We conducted a synthesis of leaflets associated with measurement of furniture to identify existing guidance. The content and readability of this guidance was then evaluated.

 

Results: From the 325 responses received, 64 therapists reported using guidance. From the 13 leaflets that were analysed, 8 leaflets were found to meet Level 3 Adult Literacy Standards (age 9–11). There were differences in the way in which the measurement of furniture items occurred within the leaflets with no measurement guidance reported for baths.

 

Conclusion: There is a need to standardize guidance to ensure that measurements are reliable.

Development of a contextually appropriate, reliable and valid basic Wheelchair Service Provision Test

GARTZ, Rachel
GOLDBERG, Mary
MILES, Alexandria
MILES, Rory
PEARLMAN, Jon
SCHMELER, Mark
BITTMAN, Sarah Jonassen
HALE, Judith
2016

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Purpose:

Currently, there is no internationally accepted way to measure the competency of wheelchair service professionals. The International Society of Wheelchair Professionals aims to develop a Wheelchair Service Provision – Basic Test as a preliminary step towards establishing a certification process. 

 

Method:

A team of wheelchair service provision experts developed test questions and conducted alpha and beta testing in order to validate them. Low-performing test items were eliminated. A pilot test was then conducted, which focused on developing a pass score, determining language barriers and validating the test as a measure of competency. 

 

Results:

90 participants completed one of three versions of the Wheelchair Service Provision – Basic Test. A pass score of 70% was established and 135 questions were accepted for the final test. Analysis of variance indicated there was a difference in scores based on language (p = 0.001), but not based on experience level. This result motivated translation in to the United Nations’ official languages.

 

Conclusions:

The results indicate that the Wheelchair Service Provision – Basic Test is a valid method for measuring basic competency of wheelchair professionals. Additionally, researchers recommend a skills assessment to help to ensure only qualified wheelchair professionals receive the certificate.

‘Everyone needs love’ – an interview study about perceptions of love in people with intellectual disability (ID)

MATTILA, Jenni
MÄÄTTÄ, Kaarina
UUSIAUTTI, Satu
2016

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How do people with intellectual disability (ID) perceive love and its role in their lives? The purpose of this study was to give voice to people with ID themselves and provide information about their needs for love. The study analysed how seven Finnish young adults with mild ID (5 women and 2 men) aged between 18 and 31 years described love and the meaning of love in their lives in semi-structured, qualitative theme interviews. The analysis was theory-led content analysis. The findings showed that the young adults with ID could describe love primarily as emotions and concrete acts, but perceived love as knowledge and skills more difficult to describe. However, the meaning of love was considered crucial and important for everyone’s well-being. The study suggests that the views and opinions of people with ID should be given more attention so that the support and guidance they are given would better need their needs. In addition, the study highlights everyone’s right to love? As per the style. Please suggest.

Discourses of service user involvement in meeting places in Norwegian community mental health care: a discourse analysis of staff accounts

YNNESDAL HAUGEN, Lill Susann
ENVY, Andreas
BORG, Marit
EKELAND, Tor-Johan
ANDERSSEN, Norman
2016

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In previous research, meeting places have been favourably addressed by service users, but they have also been contested as exclusionary. In this participatory explorative study, we sought to perform a contextual analysis of meeting places in Norway based on a discourse analysis of three focus group discussions with 15 staff members. We asked the following question: how do meeting-place employees discuss their concrete and abstract encounters with service users and their experiences? We focused on service user involvement, which was largely analysed as neoliberal consultation and responsibilisation. Service users were positioned as resisting responsibility trickling down and defending staffed meeting places. Social democratic discourse was identified in the gaps of neoliberal discourse, which is noteworthy given that Norway is a social democracy. This relates to global concerns about displacements of democracy. We suggest that meeting places appear to hold the potential for staff and service users to collaborate more democratically.

Including alternative stories in the mainstream. How transcultural young people in Norway perform creative cultural resistance in and outside of school

DEWILDE, Joke
SKREFSRUD, Thor-André
2016

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The development of an inclusive pedagogy takes on new urgency in Norwegian schools as the student body has become increasingly culturally and linguistically diverse. Traditionally, the Norwegian school has been dominated by homogenising and assimilating discourses, whereas alternative voices have been situated at the margins. In response to this tendency, we present two transcultural students’ autoethnographic stories produced in alternative spaces to the Norwegian mainstream, that is, in a transition class for newly arrived students and on Facebook. Both spaces are perceived as contact zones in the sense that they are culturally and linguistically complex. This article illustrates how the students perform cultural and linguistic resistance towards dominant homogenising discourses as the transition class and Facebook seem to offer opportunities for constructing alternative stories. Moreover, we contend that these alternative stories offer important knowledge for conventional education contexts since they represent stories of competence in contrast to the assumed limitations of these students.

Exploring normativity in disability studies

VEHMAS, Simo
WATSON, Nick
2016

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Normativity is a concept that is often misapplied in disability studies, especially in ‘postconventional’ accounts, where the concept is conflated with ‘normal’, ‘normate’, or ‘standard’. This article addresses this confusion, explores the meaning and use of ‘normativity’, and presents some analytic tools to discuss normative issues of right and wrong. The article finishes by discussing examples where conceptual confusions result in confused normative judgments focusing in particular on agency, responsibility and moral status. The article argues that disability research should carefully consider the use of theories and empirical knowledge in the light of their ethical implications as well as the lived experiences of disability.

Improving a web-based employability intervention for work-disabled employees: results of a pilot economic evaluation

NOBEN, Cindy
EVERS, Silvia
VAN GENABEEK, Joost
NIJHUIS, Frans
DE RIJK, Angelique
2016

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Purpose 

The purpose of this study is to improve web-based employability interventions for employees with work-related health problems for both intervention content and study design by means of a pilot economic evaluation. 

 

Methods 

Uptake rate analysis for the intervention elements, cost effectiveness, cost utility and subgroup analyses were conducted to identify potential content-related intervention improvements. Differences in work ability and quality-adjusted life years and overall contribution of resource items to the total costs were assessed. These were used to guide study design improvements. 

 

Results 

Sixty-three participants were a-select allocated to either the intervention (n = 29) or the control (n = 34) group. Uptake regarding the intervention elements ranged between 3% and 70%. Cost-effectiveness and cost-utility analyses resulted in negative effects although higher total costs. Incremental effects were marginal (work ability −0.51; QALY −0.01).

 

Conclusions 

The web-based tool to enhance employability among work disabled employees requires improvements regarding targeting and intensity; outcome measures selected and collection of cost data. With respect to the studies of disability and rehabilitation, the findings and methods presented in this pilot economic evaluation could guide the assessment of future assistive “e-health” technologies.

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Project Re•Vision: disability at the edges of representation

RICE, Carla
CHANDLER, Eliza
HARRISON, Elisabeth
LIDDIARD, Kirsty
FERRARI, Manuela
2015

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The representational history of disabled people can largely be characterized as one of being put on display or hidden away. Self-representations have been a powerful part of the disability rights and culture movement, but recently scholars have analysed the ways in which these run the risk of creating a ‘single story’that centres the experiences of white, western, physically disabled men. Here we introduce and theorize with Project Re•Vision, our arts-based research project that resists this singularity by creating and centring, without normalizing, repre- sentations that have previously been relegated to the margins. We draw from body becoming and new materialist theory to explore the dynamic ways in which positionality illuminates bodies of difference and open into a discussion about what is at stake when these stories are let loose into the world.

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