Lives Of Disabled Children Research Articles

The lived experiences of play and the perspectives of disabled children and their parents surrounding brain-computer interfaces

Brain-computer interfaces (BCI) offer promise to the play of children with significant physical impairments, as BCI technology can enable disabled children to control computer devices, toys, and robots using only their brain signals. However, there is little research on the unique needs of disabled children when it comes to BCI-enabled play. Thus, this paper explored the lived experiences of play for children with significant physical impairments and examined how BCI could potentially be implemented into disabled children’s play experiences by applying a social model of childhood disability. Descriptive qualitative methodology was employed by conducting four semi-structured interviews with two children with significant physical impairments and their parents. We found that disabled children’s play can be interpreted as passive or active depending on one’s definition and perceptions surrounding play. Moreover, disabled children continue to face physical, economic, and technological barriers in their play, as well as play restrictions from physical impairments. We urge that future research should strive to directly hear from disabled children themselves, as their perspectives may differ from their parents’ views. Also, future BCI development should strive to incorporate video games, recreational and entertainment applications/platforms, toys and switch-adapted toys, and power wheelchairs to better support the play of children with significant physical impairments. Implications for Rehabilitation Assistive technology research should strive to examine the social, infrastructural, and environmental barriers that continue to disable and restrict participation for disabled children and their families through applying a social model of childhood disability and other holistic frameworks that look beyond individual factors Future research that examines the needs and lives of disabled children should strive to directly seek the opinions and perspectives of disabled children themselves Brain-computer interface development should strive to incorporate video games, recreational and entertainment applications/platforms, toys and switch-adapted toys, and power wheelchairs to better support the play of children with significant physical impairments

Tracing Disabled Children’s Lives in 19th-Century Scotland through Public and Institutional Records

Records of asylums, schools, and benevolent organisations that intervened in the lives of disabled children in Scotland during the long nineteenth century have survived to varying degrees in public and institutional archives. This might suggest the existence of detailed primary source material that stands in contrast to the sparse data about those disabled children who ‘escaped’ the attention of organisations that aimed to support and direct their lives. However, the records of these formal organisations are inconsistent in what they reveal about the lives of the children under their patronage. This article explores the challenges presented by the records of three organisations, namely, the Scottish National Institution for the Education of Imbecile Children in Larbert, Edinburgh’s Gayfield Square blind school, and East Park Home for Aiding Infirm Children in the Maryhill district of Glasgow. Among the deficiencies of surviving institutional records are the frequent paucity of insights into the lives of their young residents. This article will consider how some of their life journeys can nonetheless be researched by marshalling data from the likes of mandatory registration records and decennial census enumerators’ books. In addition to benefits afforded to genealogists, such records provide historians with materials from which disabled lives can be reconstructed and analysed.

(Re)imagining inclusion to foster belonging in the lives of disabled children and youth

For the greater part of the 20th century—thanks, in part, to disability rights movements around the world—disabled children and youth have increasingly been afforded access to community spaces, such as schools and classrooms, and activities, such as inclusive recreation programmes, alongside their non-disabled peers. However, despite increased access, disabled children report ongoing experiences of exclusion in spaces labelled as inclusive.1–3 It should be noted that we intentionally use the term disabled to bring attention to the ways in which disability is culturally constructed through inaccessible spaces, medicalisation, systemic constraints, discriminatory policies, stigma, and ableist attitudes.

An International Conversation on Disabled Children’s Childhoods: Theory, Ethics and Methods


 
 
 This article brings together members of the International Advisory Committee for the Inclusive Early Childhood Service System (IECSS) project, a longitudinal study of interactions with institutional processes when families have a young child with disabilities. The article introduces international discourses on early childhood development (both individual and community) and raises questions about the ethics of these discourses in the context of historical and current global inequalities. We consider the exporting of professional discourses from the global north to the global south through directives from global institutions, and the imposition of medical thinking onto the lives of disabled children. We discuss theoretical positions and research methods that we believe may open up possibilities for change.
 
 

The DisHuman child

ABSTRACTIn this paper, we consider the relationship between the human and disability; with specific focus on the lives of disabled children and young people. We begin with an analysis of the close relationship between ‘the disabled’ and ‘the freak’. We demonstrate that the historical markings of disability as object of curiosity and register of fear serve to render disabled children as non-human and monstrous. We then consider how the human has been constituted, particularly in the periods of modernity and the rise of capitalism, reliant upon the naming of disability as antithetical to all that counts as human. In order to find a place for disabled children in a social and cultural context that has historically denied their humanity and cast them as monstrous others, we develop the theoretical notion of the DisHuman: a bifurcated complex that allows us recognise their humanity whilst also celebrating the ways in which disabled children reframe what it means to be human. We suggest that the lives of disabled children and young people demand us to think in ways that affirm the inherent humanness in their lives but also allow us to consider their disruptive potential: this is our DisHuman child. We draw on our research projects to explore three sites where the DisHuman child emerges in moments where sameness and difference, monstrosity/disability and humanity are invoked simultaneously. We explore three locations – (i) DisDevelopment; (ii) DisFamily and (iii) DisSexuality – illuminating the ways in which the DisHuman child seeks nuanced, politicized and complicating forms of humanity.

Being counted? Examining the prevalence of looked‐after disabled children and young people across the UK

AbstractSince the 1970s, there has been growing academic interest in children and young people living in state care and, more recently, in the lives of disabled children. However, there has been little attention on the lives of disabled children who are looked after by the state. This paper compares and critiques what is known about the numbers of disabled children who are looked after in England, Northern Ireland, Scotland and Wales. We discuss the conceptual and methodological limitations of systematically collecting data on disabled children in state care across the UK. We argue that to ensure that the rights of disabled children in state care are identified, acknowledged and upheld, ‘being counted’ is a fundamental first step.

Reading Rosie: The postmodern disabled child

This paper reads disabled childhoods in a number of distinct ways in order to stimulate debate around the kinds of stories that researchers and practitioners tell about the children that they work with. Narratives of bio-power – discourses of the self – have expanded as knowledge from the human and social sciences grow and institutions of society become more pronounced. Nowhere is this growth of bio-power more evident than in the lives of disabled children. It is becoming increasingly apparent that distinct bio-political discourses are building up around disabled children at the same time as these children have become the focus of participation, policy and service provision. Consequently, we believe the time is ripe to step back from the current discursive context to question how we as researchers and practitioners understand the disabled children whom we work with. Our aim, then, is to deliberately and self-consciously read the story of Rosie – a disabled child we have worked with in our research – guided by four disability discourses, with an emphasis on making this reading useful to practitioners in the area of childhood and disability.The first reading attends to the teachings of what we describe below as the autism canon, the second reading is located in an orthodox social model approach to disability, the third draws on a Nordic relational model of disability, and the fourth is filtered through what we term a socio-cultural lens. In narrating Rosie from different discursive repertoires, our aim is to explicate different understandings of disability and child that emerge and to warn against the dominance of readings which threaten to pathologise, other and separate disabled children from their peers, their families and the wider community.

Disabled children and the Children Act 1989

This article examines the impact on disabled children and their families of the Children Act 1989 from the author's perspective of close involvement in this area of policy from 1992 to 2005. It argues that the inclusion of disabled children explicitly for the first time in children's legislation marked a necessary step in seeing disabled children as children first. Two main areas of concern about the effectiveness of the Act's implementation are highlighted. First, provisions in the Act for disabled children living away from home in health and education establishments have been widely ignored and are now seen as inadequate. Second is whether the provisions regarding short breaks (respite care) have been effective in providing the sort of support that families need at the required levels. The article suggests that passing legislation may be insufficient in itself to have much impact on the lives of disabled children.

Disability in Somaliland

Civil war lasting into the 1990s destroyed much of Somalia's economic, political and social structures, and conflict still continues in the southern areas of the country. In 1991, the northwest region declared itself the Independent Republic of Somaliland, established a government in Hargeisa and is struggling to rebuild an infrastructure. It is one of the poorest countries in the world, ranking high on the UN hunger index, and is the third most heavily land-mined country. One of the most disadvantaged groups of people are the disabled, although there is little general information about numbers and kinds of disability, and few social and medical services. This article presents some limited information about the extent of the nature of disability, and local efforts to improve the lives of disabled children and adults. It reports projects funded by non-government organisations, and concentrates on a seminar held in early 2002 attended by a group of disabled people who made their voices heard.

What rights for disabled children? Home enteral tube feeding in the community

The growing number of disabled children who are tube fed at home has important implications both for families and the professionals who support them. This paper reports on the preliminary findings of a project which aims to assess the practical, social and emotional impact of home enteral tube feeding (HETF) on the lives of disabled children and their families. The evidence presented here suggests that guidance and training on HETF for non‐parent carers is both inadequate and inconsistent. Consequently access to education and social services may be restricted or even denied for disabled children on HETF as a direct result of their perceived need for nursing or medical care. Copyright © 1999 John Wiley & Sons, Ltd.

What rights for disabled children? Home enteral tube feeding in the community

The growing number of disabled children who are tube fed at home has important implications both for families and the professionals who support them. This paper reports on the preliminary findings of a project which aims to assess the practical, social and emotional impact of home enteral tube feeding (HETF) on the lives of disabled children and their families. The evidence presented here suggests that guidance and training on HETF for non-parent carers is both inadequate and inconsistent. Consequently access to education and social services may be restricted or even denied for disabled children on HETF as a direct result of their perceived need for nursing or medical care. Copyright © 1999 John Wiley & Sons, Ltd.

Parent evaluation of community based rehabilitation in Jamaica.

Much may be gained by intervening early in the lives of disabled children. While children may benefit from making developmental progress, early intervention may also help improve parental understanding, acceptance, competence, parental understanding, acceptance, competence, parent-child interactions, and overall integration into community services. Advocates also indicate their preference for direct parental involvement in teaching in home-based programs. The nongovernmental organization, 3D Projects, offers community-based rehabilitation services to more than 300 disabled children in rural south-central Jamaica. The parents of all clients receiving home-based services were interviewed to help assess the projects' impact. Home visits were much appreciated, with respondents especially in favor of the semi-academic and physical exercises. Respondents felt that they were quite involved in the training of their children. 92% were able to say which disability afflicts their child. While no baseline data were taken for this study, this degree of knowledge is significantly higher than that found in samples of individuals from comparable studies. 50% desired additional information related to their child's schooling, behavior, and speech and learning problems. More parental education is therefore warranted. 67% stated that the program has increased their sensitivity and concern for their children, 76% felt that the condition of their child is improving, and 93% generally felt positive about the program and would recommend it to other parents.