The Disabled Child's Participation Rights

Anne-Marie Callus,Ruth Farrugia

• Éditeur: Routledge
• Année: 2016
• ISBN:
  9781317035824
• Édition: 1
• Sujet: Sozialwissenschaften
• Sous-sujet: Sozialarbeit

The United Nations Convention on the Rights of Persons with Disabilities is the only UN treaty to date in which the people who are its target, that is disabled people, were actively involved in its drafting and the only one which requires the active participation of disabled people in its implementation. This does not, of course, automatically guarantee the direct participation of all disabled people. This is especially so for children with disabilities, whose status as legal minors may inhibit them from participating in decisions affecting their lives. This book focuses on the participation rights of the disabled child with regard to health, education, homelife and relationships, highlighting ways in which these rights are safeguarded and promoted throughout the EU, as well as exploring the factors that put these rights at risk. Finally, this groundbreaking text analyses whether disabled children's needs for assistance in order to realise their participation rights results in fewer opportunities to participate or in an increase in support in order for them to be able to do so.

Chapter 1 Introduction

DOI: 10.4324/9781315615509-1

The rights of the disabled child are enshrined in several international treaties, most notably the 1948 Universal Declaration of Human Rights, the 1989 Convention on the Rights of the Child, and the 2006 Convention on the Rights of Persons with Disabilities. These treaties, along with other international and national legislative instruments, protect the rights of the disabled child by virtue of their being human, and also safeguard their rights as a child and as a person with disabilities. The rights which are thus protected cover different aspects of life, starting from the right to life itself, the right to health, habilitation and rehabilitation services and adequate social protection, education, family life, leisure, sport and culture among others. The disabled child thus has the right to enjoy life and participate in their community on an equal basis with other children.

Together with all these rights, the disabled child also has a right to have their views heard and to have those views taken into account when decisions are taken which affect their lives. The right for the disabled child to exercise these participation rights, which is the subject matter of this book, are found in both the Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD). The latter places a great deal of emphasis on the importance of all disabled persons exercising their participation rights not only in matters affecting them directly but at all levels, including in the implementation and monitoring of the CRPD itself. This introductory chapter contextualises this Convention within the development of the disabled people’s movement, one of whose main struggles has always been the realisation and exercise of disabled people’s participation rights. The chapter then considers the place of disabled children in the disability rights movement, before focusing on their participation rights in general. Underlying all rights is the right to life itself. Given the fundamental nature of this right, without which there cannot be access to any other right, the right to life is considered in the present chapter. The next four chapters then consider the disabled child’s participation rights in health, education, home life and relationships, highlighting ways in which these rights are safeguarded and promoted, as well as exploring the factors that put these rights at risk. The final chapter draws together the various issues and themes that were analysed in the previous four chapters and proposes ways of accomplishing the exercise of the disabled child’s participation rights in a comprehensive manner.

The theme of this book is universal. Participation rights belong to disabled children everywhere, regardless of where they happen to live. The chapters mainly draw on European documents and research literature, in particular that from the member states of the European Union and the European Free Trade Area. This focus is especially useful in the light of the ratification of the CRPD by the European Union as a bloc. It also reflects the fact that the book was written within a European context. References to literature from other countries are made where it is especially relevant to the realisation of the participation rights of the child with disability. The themes explored, issues raised and recommendations made are applicable to all disabled children everywhere.

The terms ‘disabled child/children’ and ‘child/children with disability’ are used interchangeably. We are aware that some prefer to use ‘disabled people/person(s)’ (or in this case ‘child(ren)’) in order to emphasise that disability is a condition imposed on those who have a significant and longterm impairment, while others prefer ‘people first language’ and opt for ‘person(s)/child(ren) with disability/disabilities’. There is validity in both arguments and therefore both options are used on the understanding that ‘disabled’/’disability’ refers to the socially constructed barriers not to the impairment itself. This distinction is set out in more detail below.

Furthermore, child rights activists frequently prefer to refer to ‘the child’ rather than ‘children’. The use of the latter term seems to allude to a universal indeterminate group, while ‘the child’ emphasises that each child is an individual with distinct rights and needs. Consequently, as much as possible ‘the child’ is used throughout the book, with the use of the plural pronoun ‘they’ to use gender-neutral language.

The United Nations Convention on the Rights of Persons with Disabilities

The adoption of the CRPD and its Optional Protocol by the United Nations on 13 December 2006 marked both a point of arrival and a point of departure for persons with disability and the protection of their rights. It is a point of arrival because it marks the acceptance by governments of United Nations Member States, the majority of which have now ratified the Convention, of what many disabled people had been arguing for many decades – that the difficulties faced by disabled people in participating in the ordinary life of any given society arise not so much from their impairments as from the disabling barriers created by that society. This point was made by Ban Ki-moon, the Secretary-General of the United Nations, when he referred to the Convention as a milestone as well as ‘a new dawn’ on the day that the Convention and Protocol came into force on 12 May 2008 (Ban 2008).

The deleterious effects that disabling barriers have on people who have impairments is explicitly recognised in the CRPD itself. The Preamble to the Convention recognises that

[…] disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. (United Nations 2006: 2)

The CRPD is the first international legislative instrument to describe disability not only in terms of impairment but also in terms of the interaction between that impairment and the environment in which the disabled person is living. It is also significant that disability is not defined as a stable condition in this Convention but rather as an evolving concept. There is thus an important shift from a focus on impairment to recognition of the multifarious barriers created by society which impose difficulties on disabled people’s lives.

The CRPD scores a number of other firsts. Apart from being the first human rights treaty of the third millennium, it is the longest such treaty, and the one that took the least time for United Nations member states to reach agreement upon. The CRPD is also a point of departure because, as with all international conventions, its coming into force and its ratification by the majority of United Nations member states does not automatically guarantee that disabled people’s rights will henceforth be respected and all discrimination against them eliminated. However, like other recent international human rights conventions, the CRPD is not simply a catalogue of rights but includes an in-built mechanism for its implementation. In this regard, another unique characteristic of the CRPD, compared to previous conventions, is the inclusion of an independent mechanism to monitor the implementation of the Convention and effectively strive to ensure the protection of disabled people’s rights.

More importantly, it is the only treaty to date in which the people who are its target, that is disabled people, were actively involved in its drafting and the only one which requires the active participation of disabled people in its implementation. It also marks a significant point of arrival for the disabled people’s movements and the battle cry of ‘nothing about us without us’ that has characterised this movement from its inception.

The aim of the CRPD is for disabled people to enjoy ‘full and effective participation in society on an equal basis with others’ (United Nations 2006: 1). The CRPD, then, is not about the creation of separate rights for disabled people, but about their ability to share the same life experiences as their nondisabled counterparts and within the same communities. It is noteworthy that the phrase ‘on an equal basis with others’ is used no less than 35 times in the CRPD. The phrase has dual implications that, on the one hand, disabled people are not demanding special privileges and that, on the other hand, they cannot yet take for granted the enjoyment of the same opportunities as nondisabled people living in the same communities. As Yee and Golden (2002: 449) put it:

People with disabilities are not asking for anything extraordinary when they want to shop for groceries, watch their children play with their peers, move into a neighborhood, or go to college.

Articles 9 to 30 of the CRPD deal with the barriers that hinder disabled people from being in the mainstream of society. As the disabled people’s movement has consistently argued, such barriers must be removed in order for equal rights to become a reality. These articles require States Parties to the Convention to identify and remove obstacles which limit access to the built environment, transport, information and communication, and services and facilities that are open to the public. In these articles, the CRPD also asserts disabled people’s right to life, and their rights to equal recognition before the law and to access to justice. These articles deal with everyday aspects of life such as living independently and being included in the community. Other articles are about participation in culture, leisure and sport, participation in political life, and entering into relationships and forming a family. Furthermore, these articles assert disabled people’s rights to access to health and rehabilitation services, inclusive education and employment. They also deal with access to information and freedom of expression, and an adequate standard of living and social protection.

As can be seen, the subject matter of these articles pertains to an ordinary life within society and the enjoyment of the same opportunities and rights as other people living within the same society. It is of interest to note that articles 10 to 30 are informed by underlying principles which are set out in the Preamble of the CRPD together with articles 1 to 4. First and foremost, the CRPD refers to all human beings’ ‘equal and inalienable rights’, placing disabled people firmly within the ambit of these rights, especially as they are expressed in the United Nations Declaration of Human Rights and other international and regional human rights covenants. Importantly, the CRPD affirms that discrimination against disabled people is a violation of these rights and that the barriers to participate in society that disabled people face constitute discrimination.

In these first sections, the CRPD also recognises the contribution that persons with disability can themselves give to their communities and to human diversity in general. Enabling disabled people to give a contribution entails providing them with reasonable accommodation, practising universal design, ensuring accessibility in all areas of community life, addressing the poverty many disabled people live in, and providing the necessary support to disabled people and their families. This work, the CRPD states, should be done while also promoting the autonomy and independence of disabled people and their ability to make their own choices and be involved in decisions affecting them, including decisions made at the highest levels. The CRPD obliges States Parties to take these decisions in order to provide the necessary legislation, policies, programmes and other measures that are needed to implement the CRPD itself.

The CRPD therefore can be considered to be a point of arrival since it brings together the many different issues that the disabled people’s movement has been campaigning about, especially in the latter half of the twentieth century. It is to the development of this movement that our attention now turns.

The Disabled People's Movement

The disabled people’s movement is the collectivity of disabled individuals and organisations led by disabled people that have fought for their rights. Driedger (1989) describes it as the ‘last civil rights movement’ in that it emerged as an organised movement after the feminist, gay rights and black civil rights movements. While this movement gathered pace in many Western countries in the 1960s and 1970s (Barnes, Oliver and Barton 2002), its inception can be traced to earlier dates. Campbell and Oliver (1996) refer to a campaign, themed ‘Rights Not Charity’ by blind people in the United Kingdom in 1926. Similarly, Driedger (1989) refers to blind and deaf people in the Scandinavian countries beginning to organise themselves in groups, albeit separately, from the late nineteenth century. Disabled people gradually became more organised and more vocal in their demands for their rights and for equal opportunities as fellow citizens. In Denmark, disability organisations started to unite in their struggle for disabled people’s rights in the 1930s (Langvad 2011), in Sweden a decade later (Swedish Disability Federation 2013).

After the end of the Second World War, disabled people’s struggle took on a new momentum. The closure of long-term large-scale institutions in Scandinavian countries started slowly after the Second World War within the context of an increased awareness of the importance of safeguarding human rights, even while eugenics was still being practised especially in terms of the forced sterilisation of disabled persons. Deinstitutionalisation reached a peak in the 1970s. As Mansell and Eriksson (1995) state, it was a process which affected mainly disabled children and adults with a mild intellectual disability who had been placed in these institutions but it gradually grew into the creation of community-based services for disabled people with different impairments. It also spread to other countries, most notably the United States and the United Kingdom. In parallel to this process, people with physical disabilities, especially those with acquired impairments, began to form their own organisations. As Oliver (1990) says, the self-mobilisation of disabled people had three main aims: redefining disability in social (rather than purely medical) terms, becoming an organised political movement and creating services that suited disabled people’s needs.

The disabled people’s movement and all work related to the promotion of disabled people’s rights have been inspired by one fundamental idea – that disability is not purely caused by biological impairment but rather it is the failure of society to adapt itself to the needs of those who do have an impairment. There is thus a radical shift of focus from the individual to the social model of disability (Oliver 1996). This shift has been used in all efforts to ensure that disabled people can enjoy the same rights as non-disabled people. Significantly, the disabled people’s movement has not limited its fight for disabled people’s rights to the narrow goal of simply participating in the life of the community around them. They have also fought for their right to participate in decisions affecting their lives, thus striving to ensure that it is disabled people themselves who ascertain what their own needs are.

In this context, when talking about disability organisations, a distinction has historically been made between organisations of and for disabled people (Oliver 1984). The former are organisations in which disabled people are in control, while the latter are those organisations which are run by non-disabled people. There is a debate about the usefulness of such a clear-cut distinction (Shakespeare 2006, Oliver and Barnes 2012) between these two types of organisations. However, the issue of control by disabled people remains an important issue in the disability sector since the setting up of organisations by disabled people themselves formed a crucial part of the disabled people’s movement. Driedger’s (1989) book discusses the formation of Disabled People’s International. It was set up after disabled people attending the 1981 conference of Rehabilitation International which took place in Winnipeg in Canada. They took issue with the dominance of the non-disabled health professionals in the conference and the lack of voice of disabled persons themselves, especially when they were not ensured disabled people’s direct representation in the International Year of Disabled People which was organised by the United Nations that year. As a result, disabled people walked out of the conference. They established Disabled People’s International later on that year in Singapore – an organisation which exists to this day (Disabled People’s International 2015).

The stand that disabled people took in the Rehabilitation International conference was part of their struggle to gain control over their own lives by changing the power relations between them and members of the medical professions. In his history of disability, especially in France, Stiker (1999) describes how the aftermath of the First World War brought with it a focus on rehabilitating injured soldiers with the aim of re-integrating them into society. Rehabilitation gradually grew into a ‘collection of medical, therapeutic, social, and professional actions directed at those who are grouped under the generic term of disabled’ (Stiker 1999: 122). This development meant that disabled people’s lives increasingly came under the control of doctors and rehabilitation professionals. It was they who decided what disabled people needed, with the emphasis being on making them whole so that they could integrate into society. Medical intervention is obviously important and can bring about positive and lasting changes in attenuating impairmen...