Human rights and intellectual disabilities: an emergent theoretical paradigm?

In December 2006, the UN Convention on the Rights of Persons with Disabilities (CRPD) was introduced, and opened for signatures in March of 2007, coming into force on 3 May 2008. At the time of writing there were 153 signatories to the Convention. From the outset, the process, from drafting to coming into force, was remarkably fast by comparison to earlier Conventions. In addition, the number of signatories was also remarkable, the Convention on the Rights of the Child currently having only 140 signatories, for example. All of this suggests that this was an idea whose time had come. Intellectual disability (ID) was well represented in the debates on the Convention with both family and self-advocacy organisations playing a major role; consequently, issues of concern to the ID communities are also well represented in the Convention. There are a number of important examples, including Article 12, Equal recognition before the law, which reaffirms ‘that persons with disabilities have the right to recognition everywhere as persons before the law’ and that ‘persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’. This article directly challenges the centuries old principle, embedded in most Western jurisdictions, that people with ID are not ‘persons’ before the law and therefore outside the realm of rights bearing citizenship. Article 19, Living independently and being included in the community, emphasises a number of related rights: to full inclusion and participation, to a choice of place of residence and to the support necessary to live in the community and to prevent isolation and segregation, while Article 17 focuses on the right to respect for physical and mental integrity, and Article 10, the Right to life, ‘reaffirm(s) that every human being has the inherent right to life and (that States Parties) shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others’. Article 16, Freedom from exploitation, violence and abuse, addresses the vulnerability of many people with ID and the active measures States Parties are required to take to prevent, monitor and address issues of violence and abuse. Such measures include the requirement that they ‘put in place effective legislation and policies, including women- and child-focused legislation and policies, to ensure that instances of exploitation, violence and abuse against persons with disabilities are identified, investigated and, where appropriate, prosecuted’. These Articles, taken together the rest of the Convention, present a profound and challenging agenda for government institutions, service commissioners and providers, and practitioners. They provide specific direction on how we assess the adequacy of our current systems and structures and identify what must be done to bring them into compliance with the Convention, and more importantly, how our practice and supports measure up to these fundamental obligations to recognise, protect and promote the rights of people with ID. The Convention does not of course create new rights. Nor does it hold substantive legal force until States Parties enact the necessary changes to national law and practices to ensure the respect and realisation of these rights. What the Convention does do is provide a template for people with disabilities and their supporters to use in advocating for and working towards compliance. Similarly, it can also be used to guide our policy and practice, providing both a measuring stick and a manifesto for our work and communities. It is in this regard that this special issue of Journal of Intellectual Disability Research is both timely and important as the field begins to grapple with the difficult questions of how we support the meaningful realisation of the vision articulated in the CRPD. The issue of human rights and people with ID is of course not new. A hundred years ago, the British Member of Parliament, Josiah Wedgewood, arguing against the draconian provisions of what became the Mental Deficiency Act 1913, noted ‘Our object…is to secure justice for everybody…It seems the Commission concentrated throughout on the materialistic side, and not on…human rights as coming before human advantages’ [Hansard (Commons), 10 June 1912, p. 644]. The CRPD is of course not the first UN statement: in 1971, the Declaration on the Rights of Mentally Retarded Persons was issued. There is no need to look beyond the first article to see how far the discourse has progressed: ‘1. The mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings’. A far cry from the bold, unequivocal, statements of the CRPD! Rights also figured prominently in the earliest Scandinavian enunciation of ‘normalisation’ by Bank Mikkelson. He notes that, in addition to ‘making normal, mentally retarded people's housing, education, working and leisure conditions’, ‘normalisation’ also involved, ‘bringing them the legal and human rights of all other citizens’ (Bank-Mikkelson 1980, p. 56). The Scandinavian version of normalisation was of course eclipsed by the more influential version developed by Wolf Wolfensberger, which did not have the same focus on rights. Indeed, arguably, it can be said that after 40 years of guiding the development of supports and services, normalisation is now being supplanted by rights as the major driving force in the development of services for people with ID. The articles in this special issue reflect this idea of an emergent theoretical orientation, with early explorations of the challenges, meaning, extent and actualisation of a rights-based approach. The variety of papers in this volume speaks to the breadth and scope of the rights discourse with regards to ID. We selected from a large number of submissions to represent a broad range of topics and regions. The issue begins with a philosophical exploration of the question of moral status (Silvers), and its denial to people with ID, historically the prime rationale for their exclusion from the community of rights bearing citizens and, as the essay describes, still an area of intense debate. Next, Redley et al. consider another fundamental civil right in his paper on voting rights, barriers to their realisation, and the approaches adopted in the UK and Kenya to overcome these barriers. Then, from the perspective of another key contemporary theoretical paradigm, Verdugo et al. consider the relationship between human rights and quality of life. The three papers that follow address the critical area of the monitoring of human rights: Gobrial looks at awareness of the rights of children with ID in Egypt, while Gonzalez-Castanon et al. report on the development and testing of an ambitious project of instrument development in South America, and Evans et al. take a more focused looked at how well mental health services for people with ID in Australia measure up to the CRPD standards. Two papers (Saaltink et al. and Hillman et al.) consider the role of families and personal networks in the protection and promotion of the rights of individuals with ID and the tensions between nurturing autonomy and safeguarding. We had a number of submissions relating to health, of which two papers are included here: Feldman et al. report on a study evaluating the impact of training for people with ID on their ability to assert their rights within health-care contexts while Brolan et al. look at the role of health advocacy in supporting health rights. Lastly, Iacono et al. consider the impact of rights on research ethics. While the 11 papers here relate to a broad range of topic, there were some notable absences in the submissions. For example, none addressed directly the impact of human rights on core community living services and structures such as housing, individualised funding or employment. Nor was much attention paid to complex issues relating to consent, decision-making and legal capacity in light of Article 12 or indeed some of the critical debates about a human rights approach itself. There were also rather few empirical studies, although there are some excellent examples in this volume. The submissions support our argument that rights discourse is in its early stages with regards to ID and there is still much to be done both to understand the practical implications of a human rights approach and how it is to be effectively realised. What is, however, clear from the topics and geographical representation of papers in this volume is that human rights provide a global, and fertile framework for rethinking how people with ID are supported, included and respected. We hope this special issue stimulates the field to explore more deeply the question of what constitutes a human rights-based approach and how we can bring it to fruition. We would like to thank the reviewers, many of whom took on multiple reviews, and whose insightful comments improved the papers, and Sue Hampton-Matthews for her editorial support. Finally, we are grateful to Tony Holland for inviting us to edit this issue.

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