Search

Parents are often concerned about managing risks for their children, particularly in the context of disability. This paper reports qualitative findings from an intervention study and examines how parents of children with developmental disabilities (mainly autism) manage risks during play. Interviews (n = 17) highlighted parents' fears about their child's safety, which were often exacerbated by concerns about the child's (lack of) cognitive and intellectual capabilities to 'appropriately' negotiate harms. Outdoor play and play that involved other children were reported as particularly challenging. In these contexts, parents described how they would intervene and redirect play activities to avoid any emergent physical, emotional and social harms. The social aspects of risk and disability gave way to adult-mediated and controlled forms of play. We conclude by considering opportunities to support the full inclusion of children with disabilities and their rights to play. Play is an important aspect of all children's health and development Children with disabilities often experience fewer opportunities to engage in play Parents responses to 'risk-taking' in their children's play help understand the barriers to play for children with a disability Social aspects of play are particularly challenging for parents of a child with disability Developing socially inclusive contexts is important to enhance all children's opportunities to play. [ABSTRACT FROM AUTHOR]

The Republic of Kazakhstan ratified the United Nations Convention on the Rights of Disabled People in January 2015 as part of a programme of 'Future without Barriers' and has sought to make the majority of its schools inclusive. This paper reports on progress towards inclusion and the challenges faced by a nation that is aspiring to develop as an independent nation whilst still utilising knowledge and capital from the former Soviet Union. An analysis of the country's 'readiness' for inclusive education is offered, using Hacking's 2010 concept of (2006; 1998a & b; 2010) 'making up people' and Mitchell's 'ablenationalism'. Ablenationalism is also used to explore how Kazakhstan's efforts to assert its own distinctive identity and culture affected the positioning of disabled children and adults within education and within society. We conclude with some considerations of the possibilities for the future rights of disabled children and for inclusion. This article focuses on the republic of Kazakhstan, which separated from the Soviet Union in 1991. The country has made significant efforts to introduce inclusive education over a short period of time and there has been some success. A major barrier to progress comes from the country's system of assessing and classifying disabled children. Teachers have found inclusive education challenging and many have expressed a preference for segregation. Parents faced enormous challenges in having their disabled children accepted in mainstream schools. However, by establishing parents' groups, they have been able to influence policy and practice and increase progress towards inclusive education. Recommendations made to the Ministry of Education and Science of Kazakhstan, who commissioned this research, included adopting an international perspective to enable it to learn from other countries; incentives to schools to encourage greater inclusiveness and extended media campaigns to change attitudes towards disability. [ABSTRACT FROM AUTHOR]

As the world enters a new normal period following the Coronavirus Disease 2019 (COVID-19) global outbreak, the propensity toward the exclusion of the vulnerable group of children with disabilities is a current issue that must be given attention. This issue paper describes the collective actions to usher children with disabilities in the new normal post-COVID-19 period in the Philippines. These actions focus on assistive technologies to augment information and communication, critical services to sustain medical and developmental needs, adaptive learning methods to continue education, and other social services to improve access and mobility. Set within a single national context, this issue paper provides a view as regards the shared initiatives to improve the conditions of children with disabilities in a developing country amid the pandemic. [ABSTRACT FROM AUTHOR]

The parenting of children with autism has traditionally been explored through its negative aspects, but researchers have started to look for different parental experiences focusing on the positive experiences, family resilience and strengths of children with autism. A cross-cultural analysis considers that cultural understanding of autism reflects the way different societies and parents understand it, the variation in meanings of health, illness and disability and not simply the amount of information about autism. In a small-scale exploratory study in Spain, 8 parents from different families were interviewed to explore how they experienced their children's autism and their perception of society's response to it. Findings suggested a general lack of information about autism, parents' trouble finding strengths of autism and a division of roles and responsibilities that seems to place a disproportionate load on the mothers. The way that a society understands autism affects how parents experience their sons' and daughters' autism. This paper examines the experiences of parents of children and young people with autism in Spain through semi-structured interviews. The participants of our study did not feel included in Spanish society since many people have misconceptions about autism, do not know how to help and stare at them and their children. The parents of our study seemed to share a medical view of their sons and daughters and only one of them could think of a positive trait of his son, besides being loving. Both fathers and mothers who took part in the study agreed that mothers bear all the responsibility for caring and deciding the therapeutic and educational measures adopted. [ABSTRACT FROM AUTHOR]

The assumption that addressing disability-related child protection risks is the preserve of child protection academics, is perhaps the basis of the dearth of theoretical papers emerging from disability studies, on what is an intercontinental and evidently substantial problem for disabled children and their families. Disabled children are over-represented in their contact with child protection professionals, and in their likelihood of availing of out-of-home placements. Moreover, this is aligned to strong research evidence around a significantly enhanced risk of experiencing all kinds of abuse. The lack of explicitly non-tragedy perspectives on disability in this area risks perpetuation of discourses of misfortune and lack. Whilst overall, insufficient quantity of knowledge exists on the subject area. Selective use of theoretical insights from the proliferating field of Critical Disability Studies in this paper relieves the scarcity of theorisation around the identified problem of disproportionately high risk of abuse and neglect for disabled children. [ABSTRACT FROM AUTHOR]

Being the parent of a child with a disability and complex medical condition has been described as one of the most life-affirming, meaningful and challenging things a person can do. Co-ordinated supports are important to ensure the inclusion, participation and wellbeing of all family members. Australia's National Disability Insurance Scheme (NDIS) is designed to support Australians aged under 65 years who have a disability. Concerns have emerged regarding inequities in access to services provided within this scheme. The aim of this study was to explore the experiences of families living outside urban areas and engaging within the scheme. Utilising interpretative phenomenological analysis, this research provides important insights into the contextual factors that influence the subjective wellbeing of all family members and the manner in which the market-based NDIS may produce inequities in wellbeing outcomes for families. This article looks in detail at the lived experiences of families navigating supports provided under the National Disability Insurance Scheme (NDIS) and other primary service systems in rural regions across Eastern Australia. Each family included within this study experienced multiple episodes of delays, feelings of isolation and fears that their family member was missing out on essential supports and services, despite having approved funding packages under the NDIS. All participants in this study highly regarded, valued and respected their children and worked to ensure their safety and wellbeing. Their frustration was not for their children but for the failure of the NDIS to demonstrate these values. This paper is an important contribution to research in disability studies, and also has the potential to influence further development in this field and in shaping the future of the NDIS. [ABSTRACT FROM AUTHOR]

Inclusive education has often been fronted as the panacea in the education of disabled children. Governments have made efforts for disabled children to access schools with their nondisabled counterparts. However, inclusive education should go beyond the mere presence of disabled children in mainstream schools to the participation and achievement of such children. This paper uses the theoretical approach of Disability Studies in Education to explore the extent that the traditional schooling system is willing to go in the pursuit of inclusive education for disabled learners. Can the schooling system change from the current cohort based model to an individual based model? [ABSTRACT FROM AUTHOR]

This paper explores tensions between the social nature of learning and the current emphasis upon individual support. The paper contrasts the focus upon context in discussions with parents and practitioners, with the focus upon the individual within formal and informal written documents. The analysis is partly situated within the first author’s experiences as a parent researcher, drawing additionally upon ethnographic research carried out with families involved in early intervention, including an evaluation of over 150 pages of documentation provided by a parent. It identifies the need for assessment and evaluation to focus upon and record the broad range of context that influences learning. [ABSTRACT FROM AUTHOR]

The present paper contextualizes the recent process of development of the New National Curriculum (NNC) for use in Greek-Cypriot public schools. Using content analysis, it pays particular attention to the degree to which the language, performance expectations, and suggested materials described in the NNC take account of disabled children. Notwithstanding the human rights and anti-discrimination rhetoric that surrounds the process of creating an inclusive NNC, the findings presented herein suggest that the curriculum falls short of addressing the rights of disabled children in inclusive education. On the basis of this finding, the paper discusses the dangers inherent in implementing the proposed NNC in its current form. [ABSTRACT FROM AUTHOR]

According to Robert McRuer ‘cripping entails radically re-visioning, from committed anti-ableist positions, the taken-for-granted systems in which we are located’. Importantly, this critique enables us to recognize sites of inequality in education and provides tools to create alternative ways of conceptualizing pedagogy. Informed by such theoretical approaches to disability studies, this paper offers a Critical-crip Discourse Analysis (CcDA) of images and text representing art, craft, and design education in England between 2005 and 2011. This analysis indicates that although art education is recognized as significant for all children, limited representations of disabled children and young people can result in their experiences becoming devalued. Descriptions of apparently inclusive educational practices naturalize, prioritize, and reinforce so-called able-bodied/mindedness and fail to capture the benefits of diversity to educative practices in art. This analysis of discourses about art education is therefore an essential step in re-imagining an equitable and sustainable art education with true relevance for all. [ABSTRACT FROM PUBLISHER]

The return of the Labour government to power in 1997 brought an increased focus upon inclusive education for children with special educational needs (SEN). Alongside this there has been a desire to enhance the opportunities young people have to access physical education (PE) and school sport. Previous research has shown that children with SEN often have fewer opportunities to access physical activity due to physical, social and emotional barriers to participation. With the advent of a new Con–Lib-Dem government in 2010 and a planned review of inclusion policies and practices, this paper examines the extent to which children with SEN have arrived at utopia in relation to their entitlement and access to PE. The paper identifies four themes central to successful inclusive PE, whilst suggesting there is still some way to go for children with SEN to have the same opportunities in physical activity as their non-disabled peers. [ABSTRACT FROM AUTHOR]

This paper explores the 'offensive presence' death has sometimes represented in disability studies. The paper focuses on interviews with three mothers of children with the label of life-limiting and life-threatening impairments and positions their experiences within the current policy context for disabled children in England. The narratives are part of a wider on-going study funded by the Economic and Social Research Council 'Does Every Child Matter, post-Blair? The interconnections of disabled childhoods' (RES-062-23-1138). Findings include: (i) families experience social isolation and poverty; (ii) support from services is lacking and/or inappropriate; (iii) families worry about the future and the (physical, social and emotional) costs of care. The paper concludes by suggesting that social oppression theories of disability have much to offer in terms of challenging the disadvantage disabled children and their families' experience during life and in death. [ABSTRACT FROM AUTHOR]

Many memoirs written by the parents of children with disabilities have been published in America, especially in recent years. Although they often tell tales of struggle and heartache, they are also often tales of parents and children who manage to overcome adversity. While these stories no doubt often give many new parents of children with disabilities hope, they also obscure the fact that members of different classes have different access to various coping strategies for the extra challenges of raising a child with a disability. This paper examines nine memoirs and how the authors were able to use resources available to members of the middle and upper class (finances, time, and social connections) to more easily accomplish modern ideals of disability in America: de-institutionalization and inclusion. The coping strategies of the lower class are absent from the discussion. Finally, the paper argues that it is ill-advised to place such a heavy burden on families in accommodating persons with disabilities. [ABSTRACT FROM AUTHOR]

Drawing on interviews with parents of children with complex disabilities in several school systems in a US state, this paper examines how temporal units such as the school day and school year and practices organized around artifacts like clocks and calendars work as 'devices of temporal distanciation' to separate children with disabilities from other children and exclude their families from critical relations with schools. The paper focuses on two kinds of effects: the ways differentiated timetables separate children and the ways constructing school time in bounded, discrete units limits the ability of parents and children to make key elements of their lives visible to the school. [ABSTRACT FROM AUTHOR]

1997 saw the introduction of the Community Care (Direct Payments) Act in the UK. This piece of legislation introduced a mechanism that enabled local authorities to make cash payments to disabled people aged between 18 and 64 in lieu of directly provided services. The years since 1997 have seen the introduction of additional legislation resulting in direct payments now being an option for many more groups of people, including the carers of disabled children. Following the changes in the legislation, government now wishes to see local authorities significantly increasing the numbers of families that receive direct payments. This paper will report on a research project carried out within one local authority in the north-west of England that has one of the largest numbers of carers of disabled children receiving direct payments in the UK. Using a variety of methods this paper explores how the local authority has made direct payments so widely available to carers and the effect that this has had on their own and their children's lives. [ABSTRACT FROM AUTHOR]

In order for the sociological study of disability to enable, then it must be ready to conceptualize complex terrains of knowledge and activism. Research has to work alongside disabled people, their allies, their practices, their resistances and their theorizing. This paper makes a case for a framework of understanding that situates such work. Disability studies tends to understand its concepts (e.g. disability, exclusion, inclusion, impairment, politicization, people) as entities rooted in arborescent and hierarchical forms of knowledge. These modernist misconceptions can be challenged through understanding knowledge, practice, living and activism as rhizomatic, captured as lines of flight which are always becoming. As a new reader of Deleuze and Guattari, I make a case for disability research understanding parents and their disabled children as deconstructing or (re)deterritorializing the areas of policy, politics, practice, theory and activism. Creating burrows for shelter and eventual breakout, becoming 'angel makers', drawing on narratives of parents of disabled babies, this paper maps out a vision of parents not blocked by the strata of disabling society, but enabled by lines of flight, resistance, flux and change. This paper aims to be Deleuzoguattarian but only in ways that fit the complexities of parents' accounts. [ABSTRACT FROM AUTHOR]

This paper reflects on a small-scale qualitative research study around the establishment of a conductive education centre in a city in the north of England. From the outset, the centre's existence presented a challenge to existing services because the monopoly control of existing professional practice and policy was under question. The research does not offer an evaluation of the effectiveness of conductive education. The task was to examine the centre's provision in relation to existing statutory services, and provide a forum for informed discussion relating to the provision and organisation of multi-professional services for disabled children. The paper suggests that, although there was a mutual tension between the centre and professionals, a number of pointers could become a starting point for a more equitable partnership between parents and existing service providers. We also argue, however, that such a notion of partnership is limited without the voices of disabled people. [ABSTRACT FROM AUTHOR]

This paper explores the influence of environment on the quality of social experiences of children with disability in Sydney, Australia. The social experiences of four children with fragile X syndrome were described using ethnographic methods that included participant observation at 'special' and regular schools and in-depth interviews with parents, teachers and occupational therapists. An environmental perspective is presented here to complement existing individualist perspectives that address the social problems faced by children with disability. The environmental perspective involves (i) perceptions of disability, (ii) the child's family (relations, advocacy, encouragement, education, identity creation, dependence and separation), and (iii) the child's school (physical environment, other children, principal, teachers, therapists, policy and ethos). The paper serves as a basic framework to be adapted in further research and practice into the environmental influence of children's social experiences. [ABSTRACT FROM AUTHOR]

This paper attempts to develop a conceptual framework to understand how parents of a particular support and self-advocacy group in Malta, the National Parents' Society for Persons with Disability, experience difference and difficulty. The objective of this case study with the Parents' Society is to: (1) explore the historical and social context; (2) examine the concepts of inclusion and exclusion; (3) analyse the relationship between parents and professionals, from the former's point of view; (4) define whether the disabling barriers of parents are an issue of voice impediment. Ultimately, the purpose of this paper is to reflect on the experience of parents in this group. The tools used to validate this paper are literature review, my own experiences and involvement with the Parents' Society, documentation review and a mail questionnaire. [ABSTRACT FROM AUTHOR]

This paper examines the proposal that by exploring at a micro level the control exercised over children it is possible to identify the wider societal mechanisms for maintaining power at a macro level. The focus of the paper is on the provision of respite care for disabled children in settings away from home. Drawing on principles within childhood sociology and referencing recent research within disability studies consideration is given to issues of ‘power and control’ in relation to disabled children and how that reflects the structure of adult society. The paper concludes with a discussion of the concept of citizenship as a model for change. [ABSTRACT FROM AUTHOR]

This paper argues that the role played in educational terms by special schools is being mirrored in welfare by voluntary organisations who provide separate services for disabled children. The impact of the Contract Culture is reinforcing this trend so that the imperative in the Children Act 1989 to integrate is being undermined by the growing role of Voluntary organisations as providers, rather than innovators or advocates. The paper draws on previously published research into the changes in social workers roles in relation to child protection, since the Children Act and a previously unpublished case study in a voluntary sector Project. [ABSTRACT FROM AUTHOR]

According to capability theory, we can identify everything that is of fundamental importance in the lives of people with profound and multiple learning difficulties and disabilities if we take full account of their human capabilities. In this paper I both acknowledge the contribution of capability theory to our understanding of the condition of profoundly disabled people and express some scepticism about the extent of that contribution, suggesting that there is more to the value of a human being than an audit of their capabilities might reveal. I explore human capabilities as discussed by Martha Nussbaum, and in connection with theatre, music and the use of humour. [ABSTRACT FROM AUTHOR]

A literature review regarding the social support of immigrant mothers of disabled children in Canada was undertaken with a focus on settings where supports need to be shored up. An integrative review of published papers and policy reports concerning key aspects of social supports for immigrant mothers and disabled children was undertaken. Immigrant mothers experience numerous barriers to social supports for themselves and their disabled children. Maternal immigrant populations experience unique challenges in the setting of childhood disability as well as the challenges of mothers in the dominant culture. There are negative impacts on maternal health as a result of inadequate policy offerings. Public health policy needs to be refashioned in light of weak systems and supports for both immigrant mothers and disabled children and to acknowledge that the current system poses concerning implications for the long-term health of both groups. [ABSTRACT FROM AUTHOR]

This paper suggests that the emergence of disabled children’s childhood studies as an area of study offers a distinct approach to inquiry; it represents a significant shift away from the long-standing deficit discourses of disabled childhoods that have dominated western culture and its reaches. On the one hand, contemporary childhood studies contest normative, Eurocentric mantras around the ‘standard child’; while on the other, disability studies critique the medical discourses and the scope of its authority. However, while drawing on these two approaches, disabled children’s childhood studies provide more than this combined critique. In disabled children’s childhood studies, disabled children are not viewed as necessarily having problems or being problems, but as having childhoods. [ABSTRACT FROM PUBLISHER]

This short paper examines the extent to which the UK Coalition Government has been inventive or reparatory in their approach to policies governing the education of disabled children and young people. Of central concern here is the extent to which policies contribute to the invention of the disabled child by conceptualising their education as a constant process of reparation. I argue here that this landscape of policy proposals creates particular problems for the ways in which the pedagogic relationship can be conceptualised, reinforcing teaching as a complex negotiation of deficit and anxiety. [ABSTRACT FROM AUTHOR]

Families with children with disabilities are at higher risk of stress, financial disadvantage and breakdown. In recent decades, research and policy have shifted focus from these problems to a strengths-based approach, using concepts such as family resilience. By definition, resilience is the ability to cope in adverse circumstances, suggesting a reliance on the individual. If this is the case, then to what extent does ‘family resilience’ place another burden of responsibility onto families? Whose responsibility is family resilience? This paper begins to answer this question using interviews with parents of children with developmental disabilities based in New South Wales, Australia. [ABSTRACT FROM AUTHOR]

This paper explores the daily (micro)mobilities that youth with a visual or auditory impairment use to sustain well-being. Geographical research suggests that mobility is a universal phenomenon referred to the capacity to navigate one’s way through different spaces and places. Using a qualitative cross-cultural, visual methods approach to research with vulnerable youth, including four participants with visual or auditory impairments, we demonstrate that everyday patterns of (micro)mobilities through the youth’s home, school and community help disabled youth create pathways to resilience. The implications of these findings are discussed in relation to services that promote resilience against ableist beliefs. [ABSTRACT FROM AUTHOR]

Disability Studies has begun to interrogate the aesthetics of disability, both in terms of artwork and sensuous apprehension more generally. The present paper is a contribution to this burgeoning literature. Here I seek to demonstrate what the aesthetics of Martin Heidegger offer to that project. I do so in three stages. I begin by reviewing some relevant disability studies literature, highlighting some general themes in Disability Studies’ recent engagement with ‘the aesthetic’, widely defined. Next, I turn to the phenomenology of Martin Heidegger, to add some further philosophical depth to this project. In third and final section, I apply Heidegger’s aesthetics to the recently unveiled thalidomide memorial, to demonstrate the empirical worth of his analysis of artwork. I conclude with suggestions for future Disability Studies. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

This paper reflects critically on the meaning of play, especially as it relates to disabled children and their experiences. We explore the close alliance of play to cognitive and social development, particularly in the case of psychologies of development, and reveal a dominant discourse of the disabled child as a nonplaying object that requires professional therapeutic intervention. We argue that this pathologisation of play on the part of disabled children is closely tied to normalisation of childhood, in which non-normal bodies are increasingly expected to be governed and corrected not only by professionals but also by parents/carers. In order to rescue more enabling visions of the disabled child and their play we turn to three perspectives - the new sociology of childhood; social oppression theories of disability; critical developmental psychology. These resources, we suggest, allow us to reconfigure what we mean by play and disability in a contemporary climate that celebrates competition and marketisation over the intrinsic potentialities of all children. We argue that how we conceive play will per se undermine or promote forms of inclusive research, policy and practice. [ABSTRACT FROM AUTHOR]

This paper discusses perceptions and experiences of impairment and disability from the perspectives of learning disabled children, their parents and their social workers. The author reports on findings from her doctoral study that adults often fail to take into account the views and experiences of learning disabled children. As a result, these children developed their own interpretations of impairment and disability based on their experiences and interactions with others. Whilst this indicates that they are active social interpreters, it also suggests that adults should make greater efforts to inform and consult learning disabled children. The author concludes by reflecting on the relevance of these findings to contemporary theories of disability and childhood. [ABSTRACT FROM AUTHOR]

Since 1997, Local Authorities have had the discretionary power to pay cash directly to disabled adults up to the age of 65 and assessed as needing social service support. More recently, the scope of Direct Payments has been widened to include people aged over 65 years and will, under the Health and Social Care Act 2001, be extended to further groups including disabled people from 16 to 18 years of age and parent carers of young children with impairments. Direct Payments have the potential not only to impact radically upon an individual's quality of life but also to influence the 'community care' market economy and the way personal support services are purchased and delivered in the future. Recent figures from a survey undertaken by the Association of Directors of Social Services suggest that 80% of local authorities have already introduced a Direct Payments scheme and that over 3500 people are already in receipt of direct payments (Jones, 2000). This paper is based upon evidence from a user-controlled Best Value Review of Direct Payments (BVDP) in Wiltshire. It explores, from disabled people's perspective, the advantages and disadvantages of Direct Payments, and demonstrates the challenges still facing both service users and service providers. [ABSTRACT FROM AUTHOR]

Taking a parental perspective, this paper explores the experience of partnership between parents of disabled children with learning difficulties and educational professionals. It is argued that until policy, legislation and practice moves from its present perspective of viewing disability as the failure of the individual to that of a perspective embracing equality of value for all, relationships between parents and professionals will be fraught with difficulties. Furthermore, it is argued that until disabled children are centrally and positively placed within the relationship between parents and professionals, the existing prejudice and oppression experienced by disabled children will dominate the relationship. [ABSTRACT FROM AUTHOR]

This paper presents and analyses three case studies portraying the attitudes and reactions of Israeli parents towards their deformed children. The research method employed was participant observation in homes, combined with in-depth interviews. It was found that parents tended to isolate their handicapped children from family territories in those contexts in which the child was defined as a 'non-person'. This pattern was not affected by the parents' socioeconomic status, or by their ethnic and religious background. [ABSTRACT FROM AUTHOR]