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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.

Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

A preschool for all children? – Swedish preschool teachers’ perspective on inclusion

HAU, Hanna Ginner
SELENIUS, Heidi
ÅKESSON, Eva Björck
2020

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Building on the Salamanca Statement from 1994, the United Nations Sustainability Development Goals 2030 embraces inclusion for children in early childhood education. The European Agency for Special Needs and Inclusive Education in 2015–2017 completed a project on inclusive early childhood education, focusing on structures, processes, and outcomes that ensure a systemic approach to high-quality Inclusive Early Childhood Education (IECE). An ecosystem model of IECE was developed with a self-reflection tool for improving inclusion. This study’s aim was to investigate practitioners’ perspective on the inclusive processes and supportive structures defined in the ecosystem model, to contribute to a deeper understanding of how inclusive practice might be enabled and how barriers for inclusion can be removed. The self-reflection tool was administered in a heterogeneous municipality in Sweden, where inclusive settings are standard. Documentation from approximately 70 teachers on 27 teams was received. The documentation was analysed with qualitative content analysis based on the ecosystem model. The results showed a strong emphasis on group-related processes, whereas data on individual-related processes were scarce. This one-sided focus on the group level might endanger the inclusive processes and outcomes concerning the individual child.

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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Purpose: To investigate access to basic human rights such as health, a standard of living adequate for health, education, work, marrying and establishing a family, and voting for prosthetic and orthotic users with lower limb disabilities in Malawi.

 

Materials and methods: A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Results: Most participants reported their overall physical and mental health as good (60 [72%] and 50 [60%], respectively) and said they could access medical care (69 [83%]). Fifty (60%) participants had access to food, 72 (87%) had access to basic water, and 55 (66%) lived in housing adequate for their health. Most participants had studied in school (74 [89%]) but only 27 (33%) of the participants were working. Forty-three (52%) were married and 53 (64%) had children. Seventy-six (92%) participants could vote if they wished.

 

Conclusions: Rurality and high costs of transport and medication increase the barriers to accessing several basic human rights for people with lower limb physical disabilities. Interventions to target these barriers and increase access to secondary school, employment, and income could improve health equity for people with physical disabilities in Malawi and similar contexts.

The effect of school leadership on implementing inclusive education: how transformational and instructional leadership practices affect individualised education planning

LAMBRECHT, Jennifer
LENKEIT, Jenny
HARTMANN, Anne
EHLERT, Antje
KNIGGE, Michel
SPÖRER, Nadine
2020

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Fostering equity by offering the best education possible to all students is one of the main goals of inclusive schooling. One instrument to implement individualised education is individualised education planning (IEP). IEP requires cooperation between special and regular teachers. From research on school leadership it is known that leadership styles are connected to the way, school leaders use their scope of action with respect to fostering collaboration. However, little is known about the relationship between the leadership of a school, the provision of structures for collaboration, and the implementation of IEP in an inclusive context. The article focuses on the question to what extent transformational (TL) and instructional leadership (IL) are connected to the provision of structures for collaboration and how TL and IL as well as structures for collaboration relate to the implementation of IEP directly and indirectly. Based on data of N = 135 German schools, a path model was calculated. It revealed medium relations between TL, IL, and structures for collaboration as well as a medium effect from structures to collaboration on implementation of IEP. The effect from TL towards implementation of IEP was fully mediated by structures for collaboration, while the effect from IL persisted.

Experiences accessing and using rehabilitation services for people with physical disabilities in Sierra Leone

AENISHANSLIN, Justine
AMARA, Abu
MAGNUSSON, Lina
April 2020

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Purpose: To explore the experiences of persons with physical disabilities accessing and using rehabilitation services in Sierra Leone.

 

Materials and methods: Interviews of 38 individuals with differing physical disabilities in three locations across Sierra Leone. An inductive approach was applied, and qualitative content analysis used.

 

Results: Participants faced several barriers to accessing and using rehabilitation services. Six themes emerged: The initial and ongoing need for rehabilitation throughout life; challenges with the cost of rehabilitation and transportation to reach rehabilitation services; varied experiences with rehabilitation staff; coming to terms with disability and encountering stigma; the struggles without and opportunities with rehabilitation services; and limited knowledge and availability of rehabilitation services.

 

Conclusions: There is a continued need to address the barriers associated with the affordability of rehabilitation through the financing of rehabilitation and transportation and exploring low-cost care delivery models. Rehabilitation services, assistive devices, and materials need to be available in existing rehabilitation centres. A national priority list is recommended to improve the availability and coordination of rehabilitation services. Improved knowledge about disability and rehabilitation services in the wider community is needed. Addressing discriminatory health beliefs and the stigma affecting people with disabilities through community interventions and health promotion is recommended.

Required to be creative. Everyday ways for dealing with inaccessibility

WÄSTERFORS, David
2020

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Today’s society promises that people with disabilities can access anything, but in practice there are numerous obstacles, and the ways in which people deal with them can be easily missed or taken for granted by policy makers. This article draws on a project in which researchers ‘go along’ people with disabilities in Sweden who demonstrate and recount accessibility troubles in urban and digital settings. They display a set of mundane methods for managing inaccessibility: (a) using others, (b) making deals and establishing routines, (c) mimicking or piggybacking conventions, (d) debunking others’ accounts and performing local politics. The employment of these shared but tailored methods shows the difficulties to be accepted that people with disabilities still face, as well as the wide-ranging tension that exists between the grand rhetoric of inclusion and modest results. The tension implies that people with disabilities are required to be creative.

  • Declarations and policies often say that people with disabilities should have access to anything, but in practice this is not the case.
  • This study investigates what people with disabilities actually do when they have trouble accessing various places or resources. The results show their common and practical ways, and these ways are often taken for granted, overlapping, and combined.
  • People with disabilities ask others to support them when they face troubles to access places or resources, they make deals with important actors and they develop routines. They also observe, imitate and follow others’ actions, to pick out precisely those ways that suit their needs.
  • When people with disabilities find their ways in today’s society they also act with words. They argue against other people’s excuses or justifications for not providing access.
  • The study has found a lot of frustration among people with disabilities who get blocked, excluded or delayed. This gives them motives to engage in politics.

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.

Gaps in access and school attainments among people with and without disabilities: a case from Nepal

EIDE, Arne H
LAMICHHANE, Kamal
Neupane, Shailes
November 2019

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Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

 

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

 

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

 

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

An amalgam of ideals – images of inclusion in the Salamanca Statement

MAGNÚSSON, Gunnlaugur
2019

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The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.

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.

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

Compliance with standards of practice for health-related rehabilitation in low and middle-income settings: development and implementation of a novel scoring method

PRYOR, Wesley
NEWAR, Pushpak
RETIS, Chiara
URSEAU, Isabelle
April 2018

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Purpose: To (A) develop a method for measuring compliance with standards, and (B) implementation of the method in 12 rehabilitation centers in six low and middle-income countries (LMICs).

 

Methods: In part A, existing standards were compiled and operationalized into scores, organized into 5 ‘scorecards’ and 15 ‘sub-scorecards’, then tested and refined in an iterative process. In part B, 12 rehabilitation centers in 6 countries implemented the standards using the new method, revealing relative performance between centers, and across different standards. Internal consistency of scores within domains was computed using Chronbach’s alpha.

 

Results: A standardized method for scoring compliance with standards for rehabilitation was developed. The method evaluated compliance with standards in five domains of practice: user focused approach, service outputs, finances, staff, and general management. Multiple standards within domains were strongly related, with Chronbach’s alpha >0.80 for all but the equipment and supplies domain. Overall, in the 12 rehabilitation centers examined, 36% of standards were met or exceeded. Compliance within each scoring domain was 56% (user-focused approach), 38% (service outputs), 27% (financial management), 30% (staff management), and 33% (general management). Two out of 12 (17%) of centers met more than two-thirds of the standards, 3 (25%) met more than one-third of standards, while the remaining 7 (58%) met less than one-third of standards.

 

Conclusions: A new, standardized method for measuring performance of rehabilitation services in LMICs was developed. The method examines standards in five rehabilitation practice domains, and can be used to understand barriers to quality performance, particularly in resource-constrained settings. Implementation of the method demonstrated that current compliance with standards is modest. Ongoing interest in new standards for rehabilitation practice should be accompanied by measures to ensure they are used to strengthen quality in an emerging rehabilitation sector.

Enabling disability inclusive practices within the University of Cape Town curriculum: A case study

OHAJUNWA, Chioma
MCKENZIE, Judith
LORENZO, Theresa
2015

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Background: Disability inclusion in the curricula of higher education institutions contributes to socially responsive graduates with a capacity to address the cross-cutting issue of disability in development. This article discusses a study conducted at the University of Cape Town (UCT), South Africa, to explore disability inclusion.

 

Methodology: An instrumental case study approach was adopted and a thematic analysis of data was done.

 

Findings: Academic staff found a variety of ways to include disability, such as discussions in class, practice and service learning, but mainly as part of disciplinary requirements. Including disability as an issue of social justice stems mostly from the personal interest of staff, and is done in an ad hoc manner.

 

Conclusion: Disability should be valued, and integrated into the curriculum in a structured manner as a perspective on diversity with which to interrogate our beliefs about ourselves and society. Theorising on disability is needed, as well as the unique perspectives that emerge across interdisciplinary boundaries, especially within the African context.

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