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The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

Cross-cultural adaptation and psychometric evaluation of the Malay version of the Neck Disability Index

LIM, H H R
TAN, S T
TANG, Z Y
KOH, E Y L
KOH, K H
May 2020

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Purpose: Translating the Neck Disability Index (NDI) into the Malay language (NDI-M); evaluation of psychometric properties in patients with neck pain.

 

Methods: The NDI-M was translated according to established guidelines. In the first visit, 120 participants completed the NDI-M, visual analogue scale (VAS) for pain and demographic details. 98 participants returned to complete similar questionnaires and the Global Rating of Change (GRoC) scale. The NDI-M was evaluated for internal consistency, test-retest reliability, content validity, construct validity and responsiveness.

 

Results: The NDI-M demonstrated excellent internal consistency (Cronbach’s α = 0.84) and good test-retest reliability (ICC2,1 = 0.79). Content validity was confirmed with no floor or ceiling effects. Construct validity was established revealing three-factor subscales explaining 68% of the total variance. The NDI-M showed a moderate correlation with VAS (Rp = 0.49, p < 0.001). Regarding responsiveness, a moderate correlation between NDI-M change scores and VAS change scores was found (Rp = 0.40, p < 0.001). However, there was no significant correlation between NDI-M with GRoC (Rs = 0.11, p = 0.27).

 

Conclusions: The NDI-M is a reliable and valid tool to measure functional outcomes in patients with neck pain. It is responsive in detecting changes in pain intensity during a patient’s rehabilitation journey.

Work ethics and societal norms influence sick leave and return to work: tales of transformation

MOLDVIK, Isa
STAHL, Christian
MUSSENER, Ulrika
February 2020

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Purpose: This study’s purpose was to explore how people on sick leave manage societal norms and values related to work, and how these influence their perspectives of themselves throughout the rehabilitation process.

 

Materials and methods: This was a longitudinal interview study with a narrative approach, comprising 38 interviews with 11 individuals on long-term sick leave. Data collection was conducted in two phases and analysed iteratively through content analysis.

 

Results: The results suggest that work ethics and societal norms influence individuals’ views of themselves and the sick leave and rehabilitation process. Conforming one’s personal values to the work norm can create internal conflicts and cause feelings of shame for not being able to live up to the established norm. The strong work norm may create unrealistic expectations, which in some cases may result in constraining the return to work process.

 

Conclusion: To transform a sick leave narrative into a positive one, societal norms and their influence on identity needs to be recognised. Stakeholders involved in the process can contribute to a positive transformation by not only supporting return to work, but also to acknowledge and help people manage their self-image as having a disability that limits their ability to work.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Teaching disability: strategies for the reconstitution of disability knowledge

DÍAZ, Karim Del Rocío Garzón
GOODLEY, Dan
2019

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As teachers of disability studies, working with students from the health and psychological sciences, we tackle some of our pedagogical challenges and offer productive possibilities. We begin by introducing the offerings of disability studies and then consider our first question: how might we invite disability into our teaching? We introduce a Spanish tale – Por cuatro esquinitas de nada – that, while aimed at children and not explicitly engaged with a disability, permits us to engage in inter-textual analyses of disability. We find that students move through different stages of what we term distinction, idealisation and invisibility/concealment. We then address our second question – what does it mean to teach disability? We answer this with reference to the generative practices of two teaching methodologies: disposal and disavowal. We conclude the paper by considering the importance of generating critical theories of disability.

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.

Exploring the concerns of persons with disabilities in Western Zambia

CLEAVER, Shaun
POLATAJKO, Helene
BOND, Virginia
MAGALHÃES, Lilian
NIXON, Stephanie
2018

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Background: Understandings of disability are rooted in contexts. Despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.

 

Objectives: In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.

 

Method: In this qualitative constructionist study, data collection focused upon life with a disability and servicesavailable to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.

 

Results: The participants’ main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.

 

Conclusion: This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.

Ubuntu considered in light of exclusion of people with disabilities

NGUBANE-MOKIWA, Sindile A.
2018

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Background: This article emanates from a study funded by the KwaZulu-Natal chapter of South Africa’s National Research Foundation on the ‘Archaeology of Ubuntu’. It explores the notion of ubuntu and disability in a group of Zulu people from four communities within KwaZulu-Natal. The study is based on the notion that ubuntu is humaneness. Being human is linked to notions of care, respect and compassion.

 

Objectives: The article explores the treatment of people with disabilities from the elders’ perspectives in this community.

 

Method: This article is based on qualitative data resulting from structured interviews conducted in the KwaZulu-Natal Province between February and March 2015.

 

Results: The results reveal that society considered the birth of a disabled child as a curse from God and punishment from the ancestors. The results also indicate that people with disabilities were excluded from community activities; marrying a disabled person was unthinkable because they were stigmatised and dehumanised. The work of Hannah Arendt is used to interrogate people’s perceptions of others with disabilities in their communities.

 

Conclusion: The article posits that treatment of people with disabilities is not cast in stone but can be renegotiated and restructured through community engagement to represent genuine inclusion.

A conceptual framework to assess effectiveness in wheelchair provision

KAMARAJ, Deepan C.
BRAY, Nathan
RISPIN, Karen
KANKIPATI, Padmaja
PEARLMAN, Jonathan
BORG, Johan
2017

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Background: Currently, inadequate wheelchair provision has forced many people with disabilities to be trapped in a cycle of poverty and deprivation, limiting their ability to access education, work and social facilities. This issue is in part because of the lack of collaboration among various stakeholders who need to work together to design, manufacture and deliver such assistive mobility devices. This in turn has led to inadequate evidence about intervention effectiveness, disability prevalence and subsequent costeffectiveness that would help facilitate appropriate provision and support for people with disabilities.


Objectives: In this paper, we describe a novel conceptual framework that can be tested across the globe to study and evaluate the effectiveness of wheelchair provision.


Method: The Comparative Effectiveness Research Subcommittee (CER-SC), consisting of the authors of this article, housed within the Evidence-Based Practice Working Group (EBP-WG) of the International Society of Wheelchair Professionals (ISWP), conducted a scoping review of scientific literature and standard practices used during wheelchair service provision. The literature review was followed by a series of discussion groups.


Results: The three iterations of the conceptual framework are described in this manuscript.


Conclusion: We believe that adoption of this conceptual framework could have broad applications in wheelchair provision globally to develop evidence-based practices. Such a perspective will help in the comparison of different strategies employed in wheelchair provision and further improve clinical guidelines. Further work is being conducted to test the efficacy of this conceptual framework to evaluate effectiveness of wheelchair service provision in various settings across the globe.

Deaf identities in a multicultural setting: The Ugandan context

MUGEERE, Anthony B
ATEKYEREZA, Peter
KIRUMIRA, Edward K
HOJER, Staffan
2015

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Often located far apart from each other, deaf and hearing impaired persons face a multiplicity of challenges that evolve around isolation, neglect and the deprivation of essential social services that affect their welfare and survival. Although it is evident that the number of persons born with or acquire hearing impairments in later stages of their lives is increasing in many developing countries, there is limited research on this population. The main objective of this article is to explore the identities and experiences of living as a person who is deaf in Uganda. Using data from semi-structured interviews with 42 deaf persons (aged 19–41) and three focus group discussions, the study findings show that beneath the more pragmatic identities documented in the United States and European discourses there is a matrix of ambiguous, often competing and manifold forms in Uganda that are not necessarily based on the deaf and deaf constructions. The results further show that the country’s cultural, religious and ethnic diversity is more of a restraint than an enabler to the aspirations of the deaf community. The study concludes that researchers and policy makers need to be cognisant of the unique issues underlying deaf epistemologies whilst implementing policy and programme initiatives that directly affect them. The upper case ‘D’ in the term deaf is a convention that has been used since the early 1970s to connote a ‘socially constructed visual culture’ or a linguistic, social and cultural minority group who use sign language as primary means of communication and identify with the deaf community, whereas the lower case ‘d’ in deaf refers to ‘the audio logical condition of hearing impairment’. However, in this article the lower case has been used consistently.

Success in the workplace: From the voice of (dis)abled to the voice of enabled

MARSAY, Gloria
2014

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The intention of this article is twofold; first to encourage a shift in seeing ‘the disabled’not as people with disabilities but rather as people with unique abilities. Secondly, toexplore ways of facilitating gainful employment for these uniquely abled people. The termdisability is examined against a backdrop of definitions including the definition postulatedby the International Classification of Functioning. In this article, the life experiences of apurposive sample of people with (dis)abilities who have been successful in the world ofwork are explored. A narrative approach gives voice to their experiences. Quotes from theparticipants’ responses are used to illustrate the common themes that emerged relating totheir experiences. These themes are resonated against a backdrop of relevant literature. Ifdisabled people are enabled to recognize and use their unique abilities, as well as developvarious self-determination skills, imagine the endless possibilities which could arise for themand society in general.

Reading the National Disability and Rehabilitation Policy in the light of Foucault’s technologies of power

LESHOTA, Lekholokoe P
2013

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In the area of disability studies, models have been at the centre of debates, influencing social policies, practices and legal frameworks. The former Ministry of Health and Social Welfare in the Kingdom of Lesotho was not an exception. In its efforts to tackle issues of disability, it produced The National Disability and Rehabilitation Policy: Mainstreaming persons with disabilities into society in 2011. This policy document is rooted in the social model and seeks to address long-standing problems and challenges of people with disabilities in the Kingdom. Using ideas from Foucault, particularly the technologies and regimes of power, which work through language and practice, this article examined ways in which people with disabilities are constituted through state knowledge and government policies, and concluded that these constructions form the basis for alienation and marginalisation in society.

Stakeholder consultations on community-based rehabilitation guidelines in Ghana and Uganda

WICKENDEN, Mary
MULLIGAN, Diane
FEFOAME, Gertrude O
KATENDE, Phoebe
2012

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Background: The focus of this paper is the new broadened conceptualisation of community-based rehabilitation (CBR), which promotes the empowerment and inclusion of people with disabilities (PWDs) in diverse ways within their communities. New guidelines for CBR were launched in October 2010 by WHO/ILO/UNESCO/IDDC, and this paper describes part of the process by which these were produced using participatory approaches involving International Non-Government Organisations (INGOs) and local partners. The paper reviews the evolution of CBR and describes how grassroots consultation by INGOs working with key stakeholders in the disability arena can influence policy on disability issues, and reciprocally how policy change can inform organisations’ practice and research activities. This ongoing bidirectional influence is illustrated with data from the participatory consultation process about the new CBR guidelines carried out by Sightsavers in Uganda and Ghana

 

Objectives: To consult with key stakeholders in the disability arena in Uganda and Ghana, in order to gain their opinions and suggestions for improvements to the then draft CBR guidelines, as part of a wider global participatory process of consultation on the document.

 

Methods: The INGO Sightsavers gathered qualitative data through focus group discussions and questionnaires in both countries.

 

Results: The participants’ critiques of the draft guidelines carried out in multiagency participatory processes were analysed thematically and fed back to the CBR guidelines editorial team.

 

Conclusion: The paper concludes that stakeholders in diverse communities can actively contribute to shaping policy and practice through participatory consultations. Local and national government and non-government organisations and other key informants can inform the development of national and international guidelines and policies. This participatory approach can be successfully facilitated by INGOs. In turn, these processes have prompted organisations to adapt their own policies and programmes in order to be more responsive to the local needs and concerns of PWDs.

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