Childhood Studies Disability
by
Sonali Shah
  • LAST REVIEWED: 18 November 2016
  • LAST MODIFIED: 23 March 2012
  • DOI: 10.1093/obo/9780199791231-0019

Introduction

Traditionally, disability was considered to be a personal trouble, as opposed to the social issue and public policy concern that it is today. Children with physical and cognitive impairments were shunned away from mainstream society into asylums or workhouses. They were typically discussed and analyzed through a medical lens, pathologized and conceived as a social problem to be regulated, cured, or killed. The emergence of ideologies constructing disabled children and adults as dependent victims unable to contribute to the development of society encouraged the development of charities for disabled people and exploitation of textual and nontextual narratives of the “vulnerable disabled child” to evoke sympathy and induce the public’s financial generosity. The ideological mantra that impairment was the cause of individual and family disadvantage was embedded in the cultural consciousness of society and thus influenced how disabled people (across the lifecourse) “made themselves known” and were made known to others (i.e., as inferior, developmentally delayed, financial and emotional burdens to their family and society). It led to the expansion of the rehabilitation industry and new social policies that focused on altering or incarcerating the impaired body. However this was challenged by the upsurge of the British Disabled People’s Movement in the 1960s and 1970s. Based on the ideas of the Union of Physically Impaired against Segregation, the movement campaigned for social equality and human rights legislation in all spheres of social life and generated a new understanding of disability. With the historic shift in thinking about both childhood and disability as a public issue rather than a personal matter, there has been increasing interest in the social world of both disabled people and all children and young people. The United Nations Convention on the Rights of the Child (particularly Article 12) and the Children Act 1989 initiated subsequent developments with regard to children having a right to be involved in decisions about their lives. The United Nations Convention on the Rights of Persons with Disabilities means that disabled children today are the first generation to grow up in an era of full international civil rights. This bibliography lists works that include the voices and experiences of disabled children and young people in research about their everyday lives, including health and medical treatment, education, and identity. These works demonstrate the richness and diversity of disabled children’s individual lives, thus challenging the traditional conception that disabled children are a homogenous group.

General Overviews

General discussions about disabling barriers and social relations in different spheres of social life are detailed in various publications by disability scholars. The second edition of Disabling Barriers Enabling Environments (Swain, et al. 2004), an edited collection of papers by leading disability writers and activists, explores the disadvantage and discrimination experienced by people with impairments as they negotiate their lives in a disabling world. The primary focus is similar to the first edition, compiled as a reader for the Open University, while also reflecting the major changes that have taken place since. Similarly, the second edition of Exploring Disability (Barnes and Mercer 2010) provides an updated overview of the key policy changes, cutting-edge debates and literature in the global world of disability. It explores the changing and diverse understanding of disability in historical and contemporary societies and outlines key themes such as media representation, health and illness, culture and identity, education, and employment in relation to how they are experienced by disabled people. Each of these themes are attributed a greater voice in separate publications. For instance, Thomas 2007 explores the different theoretical perspectives on disability and illness, crossing the disciplinary divide of disability studies and chronic illness. Bringing together a range of theoretical sociological perspectives, Priestley 2003 examines the lifecourse of disabled people, from birth to death, including the extent to which structural, cultural, and generational boundaries control the progression of disabled people. The chapters on birth and childhood would be particularly useful to students and scholars interested in disabled children’s childhoods. They examine the debates over right to life and eugenics, issues that have also been tackled by Shakespeare 2006, a controversial and exciting contribution to disability studies that looks at disability from different positions. Priestley 2001 collects essays from thirteen countries to explore the connections between disability, policy, and generation. These works illustrate the changing disability policy context and how it has influenced the private lives of disabled children and young people. Much has contributed to this, including changes in medical treatment, educational structures, technologies, social attitudes, physical accessibility, user-controlled services, and right-based legislation. Corker and French 1999 exposes the marginalized voices of disabled children, exploring experiences of disability and identity construction. Grandin 2006 presents a subjective view of life with autism.

  • Barnes, Colin, and Geof Mercer. Exploring Disability. 2d ed. Oxford: Polity, 2010.

    E-mail Citation »

    Examines the key policy changes, cutting-edge debates, and literature in the global world of disability. It explores the changing and diverse understanding of disability in historical and contemporary societies, in terms of media representation, health and illness, culture and identity, education and employment. This is a core resource for students and teachers in disability studies, social care, and sociology.

  • Corker, Mairian, and Sally French, eds. Disability Discourse. Philadelphia: Open University Press, 1999.

    E-mail Citation »

    Bringing together a range of theoretical and empirical interpretations in relation to disability and impairment, disabling barriers, individual and collective identities, and the personal and the political, this text emphasizes the multifunctional and multidimensional nature of disability. The book accommodates marginalized voices (including disabled children and teenagers), while presenting innovative ways of theorizing disability and exploring the experience of disability in everyday lives.

  • Grandin, Temple. Thinking in Pictures and Other Reports from My Life with Autism. New York: Vintage, 2006.

    E-mail Citation »

    In her book, Grandin reviews scientific research in relation to autism and gives an account of her lived experiences of autism. She describes her visual spatial skills and how these skills have facilitated her scholarly work with livestock. Her lived experiences provide an understanding of the similarities and differences between those with and without the autistic mind. A combination of personal and medical perspectives, this book would prove valuable to students and professional working with autism, as well as people who live with it.

  • Priestley, Mark. Disability and the Life Course: Global Perspectives. Cambridge, UK: Cambridge University Press, 2001.

    DOI: 10.1017/CBO9780511520914E-mail Citation »

    This edited collection brings together essays from thirteen countries to explore the interconnections between disability, generation, and the lifecourse within an international context. The volume combines contributions, from disabled and nondisabled writers, to explore the theoretical, the personal, and the political.

  • Priestley, Mark Disability: A Life Course Approach. Cambridge, UK: Polity, 2003.

    E-mail Citation »

    Organized using a lifecourse approach, this text examines the experience of disability for people with impairments and explores how practices, policies, and structures in different societies affect people of different ages and generations. Using illustrative examples about specific disability issues (such as birth choices, sexuality, and parenting), this book encourages debate in and beyond the classroom.

  • Shakespeare, Tom. Disability Rights and Wrongs. London: Routledge, 2006.

    E-mail Citation »

    This text challenges the social model approach of the British Disability Movement and argues for a bridge between the medical and social model of disability. Engaging with issues of bioethics, charity, and care in relation to the lives of disabled people, this is an accessible, stimulating, and controversial read for students and researchers in disability studies, social work, and medical sociology.

  • Swain, John, Sally French, Colin Barnes, and Carol Thomas, eds. Disabling Barriers Enabling Environments. 2d ed. London: SAGE, 2004.

    E-mail Citation »

    Divided into five sections, this volume includes contributions from disability scholars and activists who write about the various perspectives on disability and impairment, disability culture and identity, citizenship and participation of disabled people, and the support and control disabled people have over their lives. It provides a critical understanding of the disabling barriers and enabling environments disabled people engage with in their everyday lives.

  • Thomas, Carol. Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology. London: Palgrave Macmillan, 2007.

    E-mail Citation »

    Thomas explores the disciplinary divide between medical sociology and disability studies. Drawing on the work of several high-profile researchers in disability studies, her book examines the themes of care and dependency, the impaired body, and lived experience from historical and contemporary standpoints. This text would be beneficial to students and researchers in medical sociology and disability studies, as it offers fresh ideas and ways in which both disciplines connect and complement each other.

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