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Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system


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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.

Inheritance, poverty, and disability

GROCE, Nora Ellen
LONDON, Jillian
STEIN, Michael Ashley

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Inheritance is a significant means of transferring wealth from one generation to the next, and therefore increasingly attracts attention from researchers and pol- icy-makers working on intergenerational and multidimensional poverty. How- ever, until now disabled persons have been overlooked in these discussions. This oversight is particularly unfortunate because, as a group, the estimated one bil- lion people with disabilities (some 15% of the world’s population) are among the poorest and most marginalized of the global population. Over the past dec- ade, a small but growing literature has examined the recursive connections between poverty and disability throughout the developing world. In this paper, we argue that disabled individuals are routinely denied inheritance rights in many low-income and middle-income countries, and that this is a significant and largely unrecognized contributor to their indigence. The denial of inheritance is both a social justice issue and a practice that can no longer be overlooked if disabled persons are to be brought into the development mainstream.

The African disability scooter: efficiency testing in paediatric amputees in Malawi

MCCAHILL, Jennifer L
LAVY, Chris

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The African Disability Scooter (ADS) was developed for lower limb amputees, to improve mobility and provide access to different terrains. The aim of this study was to test the efficiency of the ADS in Africa over different terrains.



Eight subjects with a mean age of 12 years participated. Energy expenditure and speed were calculated over different terrains using the ADS, a prosthetic limb, and crutches. Repeated testing was completed on different days to assess learning effect. 



Speed was significantly faster with the ADS on a level surface compared to crutch walking. This difference was maintained when using the scooter on rough terrain. Oxygen cost was halved with the scooter on level ground compared to crutch walking. There were no significant differences in oxygen consumption or heart rate. There were significant differences in oxygen cost and speed between days using the scooter over level ground, suggesting the presence of a learning effect. 



This study demonstrates that the ADS is faster and more energy efficient than crutch walking in young individuals with amputations, and should be considered as an alternative to a prosthesis where this is not available. The presence of a learning effect suggests supervision and training is required when the scooter is first issued.

Dis/ability and austerity: beyond work and slow death

LAWTHOM, Rebecca

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The forthcoming book Dis/ability Studies: Theorising Disablism and Ableism argues that we are living in an historical epoch which might be described as neoliberal-ableism, in which we are all subjected to slow death, increased preca- rity and growing debility. In this paper we apply this analysis to a consideration of austerity with further reference to disability studies and politics.

Challenging perceptions of disability through performance poetry methods: the ‘Seen but Seldom Heard’ project

HODGES, Caroline E M
FENGE, Lee-Ann
CUTTS, Wendy

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This paper considers performance poetry as a method to explore lived experiences of disability. We discuss how poetic inquiry used within a participatory arts-based research framework can enable young people to collectively question society’s attitudes and actions towards disability. Poetry will be considered as a means to develop a more accessible and effective arena in which young people with direct experience of disability can be empowered to develop new skills that enable them to tell their own stories. Discussion of how this can challenge audiences to critically reflect upon their own perceptions of disability will also be developed.

Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Included as excluded and excluded as included: minority language pupils in Norwegian inclusion policy


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This article offers an analysis of four Norwegian policy documents on inclusion of minority language pupils. The main concepts of this policy will be reconstructed and re-described, applying Niklas Luhmann’s systems theory at different levels of the analysis. Luhmann’s theory about society as a conglomerate of self- referential social systems investigates how these systems construct meaning and what consequences these constructions have for inclusion and exclusion processes. This article will focus on the Norwegian educational policy towards minority language pupils, defined by the policy as pupils who have a different mother tongue than Norwegian and Sami language. It is argued that this inclusion policy is excluding in its social form, and that it exhibits an increased emphasis on education when it comes to inclusion in society. Re-descriptions based on logic of forms will show how binary distinctions such as ‘inclusion/ exclusion’, ‘majority language pupil/minority language pupil’ and ‘early intervention/wait and see’ emerge in the timespan of 2004–2012. Based on this, it is claimed that descriptions of inclusion and exclusion are mutually constituted in the policy, thus giving rise to the question of whether the policy goal – ‘full’ inclusion in society – is realisable. A paradox will be uncovered: minority language pupils are being included as excluded as well as excluded as included in the documents, displaying how inclusion and exclusion are two sides of the same coin. The strategy early intervention is introduced to remedy exclusions, thus converting the problem of inclusion into a problem of time.

Do reading disabilities explain the increase of depressive symptoms in late adolescence?


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The present study examined how depressive symptoms change in late adolescence and whether reading disabilities (RD) affect the level or change of the symptoms. The sample consisted of 293 Finnish adolescents (150 girls, 143 boys; 58 with RD). Participants completed a screening test for reading and spelling skills in ninth grade (age 15), and a depression screening test three times during upper secondary education (ages 16–18). Longitudinal data were analysed using repeated measures ANOVA. Adolescents’ self-reported level of depressive symptoms increased in late adolescence ( p , 0.001). RD did not directly affect the level or change of depressive symptoms. Girls reported a greater increase in depressive symptoms than boys, and this interaction effect held especially for girls with RD.

Disability and the League of Nations: the Crippled Child’s Bill of Rights and a call for an International Bureau of Information, 1931


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In Disability Studies the evolution of conceptual models is often portrayed as linear, with a nineteenth-century charity model shifting to the medical model that dominated disability discourse in the twentieth century. This is then assumed to be largely unchallenged until the 1970s, when an emergent Disability Rights Movement re-framed issues into the social model, from which evolved a rights-based model. This paper documents two early efforts to address disability issues submitted to the League of Nations: the Crippled Child’s Bill of Rights in 1931 and a ‘Memorial’ requesting the establishment of an International Bureau of Information on Crippled Children in 1929. Neither submission achieved its stated goals, yet both reflect early attempts to place disability within wider social contexts.

Moral wrongs, disadvantages, and disability: a critique of critical disability studies


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Critical disability studies (CDS) has emerged as an approach to the study of disability over the last decade or so and has sought to present a challenge to the predominantly materialist line found in the more conventional disability studies approaches. In much the same way that the original development of the social model resulted in a necessary correction to the overly individualized accounts of disability that prevailed in much of the interpretive accounts which then dominated medical sociology, so too has CDS challenged the materialist line of disability studies. In this paper we review the ideas behind this development and analyse and critique some of its key ideas. The paper starts with a brief overview of the main theorists and approaches contained within CDS and then moves on to normative issues; namely, to the ethical and political applicability of CDS.

Oscar Pistorius and the melancholy of intersectionality

SWARTZ, Leslie

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The alleged shooting by Paralympian and Olympian athlete Oscar Pistorius of his girlfriend Reeva Steenkamp has led to strong reactions worldwide. Scholars in the field of disability studies have expressed shock and disappointment in response both to the death itself and to its implications for the representation of disability. In South Africa in the wake of the death of Ms Steenkamp, much has been made both by critics of Pistorius and by his defenders about his status as a white South African man, but little has been said about disability issues. This silence in South Africa about disability as a possible identity factor in this case draws attention to the extent to which disability questions remain profoundly raced and gendered, and influenced by the colonial and apartheid past. The tragic alleged shooting by Oscar Pistorius draws attention back to how important intersectionality is to understanding disability in South Africa and other unequal societies.

How musical engagement promotes well-being in education contexts: The case of a young man with profound and multiple disabilities


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Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenome- nological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors’ construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts.

Parent peer advocacy, information and refusing disability discourses


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Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.

The psychosocial impact on standing devices


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The aim of this study was to explore the psychosocial impact of standing devices as experienced by users. 



This is the second part of a comprehensive survey in five counties in Sweden where all the subjects with standing devices were invited to participate. The impact of standing devices on functional independence, quality of life and wellbeing was assessed using a questionnaire, Psychosocial Impact of Assistive Devices Scale (PIADS).



The psychosocial impact of the standing devices was perceived as positive. The highest PIADS scores in relation to age were found in the oldest group, aged 65 years and older. The ability to walk and independence in ambulation resulted in higher scores than the use of a wheelchair and/or dependence on others. Those who stood often awarded higher scores in the PIADS questionnaire compared to those who used the device less frequently. When standing was integrated in various activities, its psychosocial impact received high scores. 



The psychosocial impact of standing devices was generally experienced positively. The main results indicated that standing in a standing device had a value and we as professionals should ask the users about the intended purpose of their standing in order to prescribe the optimal device.

Political liberalism and the justice claims of the disabled: a reconciliation

BADANO, Gabriele

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Unlike his theory of justice as fairness, John Rawls’s political liberalism has generally been spared from critiques regarding what is due to the disabled. This paper demonstrates that, due to the account of the basic ideas of society and persons provided by Rawls, political liberalism requires that the interests of numerous individuals with disabilities should be put aside when the most fundamental issues of justice are settled. The aim is to accommodate within public reason the due concern for the disabled while upholding political liberalism. To achieve this aim, a revision of the basic ideas of persons and society is proposed. The idea of persons should be regarded as more fundamental than that of social cooperation, and persons should be defined in terms of minimal moral powers.

Count me in - Include people with disabilities in development projects | A practical guide for organisations in the North and South

BRUIJN, Paulien
et al
November 2012

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"People with disabilities are often amongst the poorest in the developing world. Yet they are usually left out of development projects. This is not because of ill-will. Development organisations simply do not know how to include them. This book offers suggestions based on the experience of organisations that participated in a two-year learning programme. It is full of useful tips on how to launch inclusive programmes and projects, how to prepare your staff for working with people with disabilities and how to adapt your organisational processes and systems"

Available in Braille, high resolution, low resolution and word formats.
Available in Portuguese: "Inclusão de pessoas com deficiência nos projectos de desenvolvimento: Um guia prático para organizações do Norte e do Sul".
Available in French: "Tiens compte de moi - L'inclusion de personnes en situation de handicap dans les projets de développement"
Available in Spanish: "Cuenta conmigo - Incluir a las personas con discapacidad en los proyectos de desarrollo"

Sterilisation and intellectually disabled people in New Zealand—still on the agenda?


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Support through care and protection within a medical framework, rather than through the idea of independence within the least restrictive environment, continues to guide service provision for intellectually disabled people in the sexuality area. Past practices have included use of involuntary sterilisation. This article outlines the outcome of a search for information undertaken because of concerns that use of sterilisation-related procedures may remain embedded in contemporary approaches to sexuality support management. Verified instances of hysterectomy carried out between 1991 and 2001 were uncovered. Documents tabled at a Parliamentary Select Committee in 2003 expressing concerns about use in relation to young disabled girls were also found. Requests for sterilisation-related procedures exemplify how the right of all vulnerable citizens to full bodily integrity is currently adjudicated in New Zealand. It is suggested that further research is needed to pinpoint and address the underlying social customs through which requests for such procedures are negotiated and resolved.

Practical lessons from four projects on disability-inclusive development programming

COE, Sue
WAPLING, Lorraine

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This article considers early lessons learned from the inclusion of disabled people, based on socially inclusive principles, in World Vision programming work in Angola, Armenia, Cambodia, and Senegal. Externally led reviews and evaluations conducted between July 2007 and April 2008 drew out seven key lessons. In summary: the substantial effect of stakeholders’ attitudes on practical implementation; the importance of authentic consultation with a range of disabled people; appropriate budgetary considerations; and a need for caution regarding livelihoods work.


KHAN, Mushtaq
November 2009

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Daniel Kaufmann and Mushtaq Khan debate the role and importance of tackling corruption as part of a development strategy. Daniel Kaufmann led the work on governance at the World Bank Institute until November 2008, and is currently a Senior Scholar at the Brookings Institution. Mushtaq Khan is Professor of Economics, Department of Economics, School of Oriental and African Studies, University of London. The session is facilitated by Owen Barder, a former UK Department for International Development (DFID) official, now working for Development Initiatives