The disabled child's participation rights

Abstract

This book is about the right of the disabled child to participate in decisionmaking processes that affect their lives. Participation can take place at different levels, from asking the disabled child for their views about specific aspects of their lives to their being actively involved in making major decisions. The right of the disabled child to participate in these processes is enshrined in the United Nations Convention on the Rights of Child (CRC) and upheld in the Convention on the Rights of Persons with Disabilities (CRPD). This book uses the requirements of these two Conventions as its basis. In line with the latter Convention, it considers disability to be the outcome of the interaction between people with impairments and the societal barriers that they encounter. In considering different aspects of disabled children’s lives, namely health, education, home life and relationships, the book reviews their rights as they are stated in the CRC and CRPD and then focuses specifically on their right to participate in decisions related to these areas. The book brings together the study of Law and Disability Studies as well as Childhood Studies. Disabled children are thus seen as holders of rights and as human beings in their own right, rather than incomplete human beings or, as Qvorturp (1994, cited in Tisdall and Punch 2012) puts it, ‘human becomings’.

This book has a largely European focus, concentrating mostly (but not exclusively) on the member states of the European Union. It draws from international human rights treaties, case law of the European Court of Human Rights, official reports and other documents as well as the relevant research literature, especially that literature which includes disabled children’s voices. After a detailed description of the background to the development of disabled people’s rights in the first chapter, it examines the scope for participation in decision-making that disabled children enjoy in their everyday lives, identifying the factors that promote or hinder participation in the different aspects of life analysed in the next four chapters. The final chapter brings together the main points elicited from these analyses and puts forward recommendations to ensure that the realisation of the participation rights of the disabled child does not happen sporadically but in a systematic fashion. For this to happen, the exercise of participation rights by disabled children, whatever shape or form it may take, should not be contingent on the presence of adults who happen to believe in its importance and have the skills to make it happen. Adults need to fully understand what is meant when one speaks of the disabled child’s participation rights, and learn how to make these rights a reality.

This book is aimed at a wide-ranging audience. Scholars and students in Law, Disability Studies and Childhood Studies will find it relevant, as will those who come into contact with disabled children in their work, whether directly or indirectly. It is also relevant for the parents and other primary caregivers of disabled children. In their daily work of bringing up their disabled children it is important that they are aware not only of their children’s right to community living, inclusive education, adequate social protection, leisure activities among other rights, but also of the right of those children to have a say in what goes on in their lives. It is our hope that this book will make a contribution towards improving the wellbeing of disabled children by promoting the understanding of their participation rights.