The right to make one’s own decisions and to have these decisions respected by law is a basic human freedom which most adults take for granted. However, for many people with disabilities (especially people with intellectual, psycho-social and other cognitive disabilities) this fundamental right has been denied – informally, in the private sphere, and formally, in the public sphere through States’ laws and policies. Since the entry into force of the UN Convention on the Rights of Persons with Disabilities, there is an emerging consensus in human rights discourse that all people, regardless of their decision-making skills, should enjoy ‘legal capacity’ on an equal basis—that is, the right to be recognised as a person before the law and the subsequent right to have one’s decisions legally recognised. To date most of the literature on how this right should be realised has been developed by non-disabled scholars without the direct input of people with disabilities themselves. The Voices of Individuals: Collectively Exploring Self-determination (VOICES) project takes a radical approach to develop new law reform ideas based on this concept of ‘universal legal capacity.’ Its primary objective is to develop reform proposals based on the lived experience of disability. The project is supporting individuals who self-identify as disabled to develop personal narratives about their experiences in exercising, or being denied, legal capacity. Through a collaborative process, legal and social science scholars are paired people with disabilities to develop their personal narratives to frame and ground concrete proposals for law reform in previously unexplored areas – including consent to sex, contractual capacity, criminal responsibility and consent to medical treatment. In this way, the legitimacy of people with disabilities’ perspectives on the options for law reform will be validated, and this will create a powerful argument for legal change.
The individual right to self-determination is deeply rooted in the right to recognition as a person before the law. Recent developments in international human rights law suggest that a right to legal capacity is a crucial component of what it means to be recognised as a person before the law. Legal capacity is now viewed under international law as the recognition of an individual or an entity as having legal standing (recognition of legal personality) and legal agency (recognition as an actor under the law, with the power to enter into legally binding agreements). More broadly, we might say that legal capacity is a constructive legal fiction; a concept that allows us to define the boundaries of personal autonomy or individual self-determination and to negotiate power relations with others. This concept has global relevance and has been much debated in the drafting of UN human rights instruments, such as the Convention on the Rights of Persons with Disabilities (UN CRPD). However, it is also a specific focus of European scholarship, and recent policy developments in both the EU and the Council of Europe in the fields of personalisation of support services, independent living and anti-discrimination, demonstrate that further knowledge is required on how this concept can be fully realised in the lives of people with disabilities.
The granting and denying of legal capacity has been a fascination of humanity since the beginning of civilization; and throughout history, laws and societies have denied legal capacity to many different groups – including women (particularly upon marriage), slaves, and racial or ethnic minorities. It is now generally accepted that legal capacity should not be denied based on social status, skin colour or gender—and yet a label of disability (particularly intellectual disability, autism, dementia, and psycho-social [mental health] disability) is still widely recognised as a legitimate basis for restricting an individual’s legal capacity, or removing it entirely. Therefore, the experiences of people with disabilities in seeking to exercise their legal capacity and legal agency will form the starting point for VOICES research on self-determination.
Much has been written about the idea of ‘universal’ legal capacity in the context of disability – the notion that all persons, as human beings, possess legal capacity and should be recognized as legal agents, regardless of their individual levels of cognition or decision-making ability. Such scholarship generally takes as its starting point the right to legal capacity for persons with disabilities on an equal basis with others in all aspects of life, as enshrined in Article 12 of the UN CRPD. Many scholars have also written about moral conceptions of ‘personhood’, and how moral philosophy can accommodate persons with complex disabilities within theories of justice, recognising that such individuals are of equal moral worth with the ability to develop and fulfill their own conception of a good life. However, to date, relatively little literature has crossed the divide between moral philosophy and legal scholarship on ‘subject-hood’ and autonomy – to provide a more concrete framework to give life to the principle of universal legal capacity in the context of persons with disabilities.
Existing legal scholarship in this field has focused on providing legislative models for developing ‘supported decision-making’ as an alternative to adult guardianship, or on abolishing adult guardianship and other forms of substitute decision-making which result in denials of an individual’s legal capacity. This is important work, but much more needs to be done to embed the concept of universal legal capacity in our domestic legal systems. Many areas of law which are also in need of reform to accommodate a universal vision of legal capacity remain unaddressed: including laws defining criminal responsibility as applied to people with cognitive disabilities, laws prescribing contractual capacity and other related financial, inheritance and property law, and laws on capacity to consent to sex. In part, these law reform efforts have remained unexplored due to a lack of awareness about how the concept of universal legal capacity might apply in practice – and in part because the redrawing of boundaries around personal autonomy requires a redefinition of what we consider to be permissible or impermissible intrusions into autonomy. In other words, to develop a comprehensive and coherent approach to law reform, some fundamental questions need to be answered, which have not to date been addressed by the new literature on universal legal capacity. The VOICES project has tackled this challenge and addressed previously unexplored areas of law reform in a ground-breaking way. It did not start, as so many law reform projects do, from a baseline of the existing legal framework; for example, by considering how law might adapt within its narrow confines to better accommodate new ideas about legal agency and self-determination. Instead, it began with the lived experience of disability, and used this experience to constantly challenge and confront received wisdom about how laws might operate to ‘protect’ the rights of persons with disabilities.
In undertaking this challenge the VOICES project had 3 key objectives:
Objective 1: To make visible the lived experience of people with disabilities through narratives on the exercise, restriction and/or denial of legal capacity.
Objective 2: To apply the concepts of universal legal capacity, and support to exercise legal capacity to previously unexamined areas of law.
Objective 3: To construct critical legal and social policy responses to the lived realities of people with disabilities in previously unexamined areas of law.
At the conclusion of the action all 3 objectives have been achieved through a variety of means. Objective 1 was achieved through making public the experiences of people with disabilities in the exercise or denial of legal capacity through presentations at public conferences and the public sessions of workshops, through video and blog posts on the project website, and ultimately, in the publication of the final edited collection from the project in 2018. Objective 2 was achieved primarily through the publication of the project's working papers on the theoretical framework on the project website and ultimately through the publication of revised versions of these papers with additional commentary in a special issue of the International Journal of Law in Context in 2017. Objective 3 was achieved by the pairing of those with lived experience (known as storytellers in the project) with respondents from a wide range of disciplinary and professional backgrounds - including law, sociology, social policy, health and social care, history, art, politics and activism. These pairs co-authored chapters containing narratives and critical responses to those narratives which were published in the project's edited collection in 2018.
