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Voices Of Individuals: Collectively Exploring Self-determination

Periodic Reporting for period 3 - VOICES (Voices Of Individuals: Collectively Exploring Self-determination)

Reporting period: 2018-06-01 to 2018-11-30

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.
The VOICES project has achieved all of its targets including the recruitment of 15 pairs of storytellers and respondents who contributed chapters to an edited collection, 8 events comprising of 1 conference and 7 workshops (each over 2 days), the publication of a special issue dedicated to the project’s theoretical framework in a leading academic journal, the publication of the final edited collection entitled ‘Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories’ by Routledge in July 2018.

Over the course of the first two months of the project the project team was recruited and they then focused on the establishment of the Advisory Committee and Steering Group and the launch of the project’s blog. The project also capitalised on a number of international experts attending the Centre for Disability Law and Policy’s international summer school in month 1 of the project to hold a discussion group on the theoretical framework. This was held alongside some core meetings of the authors of the papers for the theoretical framework and which were held again in months 4 and 7. The next 6 months were spent drafting the 4 articles, which underpin the project’s theoretical framework before circulating them to the Advisory Committee and Steering Group for the project for their feedback. The articles are submitted for publication in a special issue of a leading peer review journal and published in March 2017. Over the course of this time the team were also organising the project’s opening conference (held in month 9), drafting a proposal for a special issue and publicising the project and its aims in advance of the main recruitment of participants.

The opening conference in month 9 was held in Dublin and had 100 attendees including members of civil society, national and international policy makers and academics, people with lived experience and researchers. The event brought together the core themes of the project and was structured so the methodology of the project, interweaving narratives with critical legal/social responses, was highlighted across the day. Following the opening conference in month 9 the project’s focus shifted to the recruitment of participants which involved the development of application forms for potential participants. 2 versions (including easy read materials) for storytellers and 1 for potential respondents were developed as a result. These were designed to facilitate the selection of the research participants and to guide the team in developing pairs of storytellers and respondents who would be invited to the first workshop During this time the project team was also organising the first workshop, where the pairs would meet for the first time, which was held in month 11. Workshop 1 was a three day event which included a public day featuring a range of international perspectives, a private day which facilitated the start of the pairing process for storytellers and respondents and the first face-to-face meeting of the Advisory Committee and Steering Group. On foot of this event, and the preceding recruitment process, 16 pairs of storytellers and respondents were recruited. The team then drafted guidance for the pairs on how to work together and planned their participation at thematic workshops. The first of these workshops, held in month 16 looking at criminal responsibility, had up to 40 attendees on the public day. The second workshop was held in month 18 and focused on contractual capacity. The event had over 50 attendees on the public day. The third thematic workshop in this period was held in month 20 looked at consent to medical treatment and also had almost 60 attendees. On completion of that event the project’s focused shifted to supporting pairs to submit the first draft of their chapters for feedback and organising the remaining workshops. The final thematic workshop on consent and relationships was held in September 2017 (Month 28) with over 80 attendees on the public day.

A book editing workshop combined with advisory board and steering group meeting was held in November 2017 (Month 30) which saw over 90 attendees gather in NUI Galway on the public day to hear from the pairs on their progress in the project and their contribution or the final edited collection. The public conference was entitled ‘Making our own Decisions: Sharing Stories and Creating Change’ and attendees were encouraged to contribute their views by drawing or writing on an ‘art wall’ or recording a message in a sound booth. On the private day (the 21st November) the storytellers, respondents, and advisory board and steering group members worked together to finalise the chapters for the edited collection. The project team discussed plans for the book launch with the pairs on the private day and again with the Advisory Board and Steering Group at their meeting.

The book launch, accompanied by a final two-day activism and influencing policy workshop, took place in October 2018 (Month 41). In preparation for this event, the project team in collaboration with the project participants selected a policy-maker or policy-influencer of relevance to each of the chapters in the book. The policymakers and influencers chosen to participate in the project were from a diverse range of professions that impact on policy, including journalists, judges, police officers, academics, activists and members of civil society and human rights monitoring bodies. They also came from many different types of policy backgrounds such as aviation and transport, adult guardianship, banking and consumer protection, education, and legal aid. Each invited expert committed to read and reflect on a specific chapter of the edited collection, and meet with the authors of that chapter to discuss its relevance for their own practice and ways in which reforms of law, policy and practice could be developed, based on these participants' lived and professional experiences. The first day of the workshop was a closed session with the project participants to develop strategies for continuing to create social change beyond the lifetime of the project. The second day of the workshop was open to the participants and invited experts to discuss the findings of the project and possible ways forward. This event had over 40 participants on the second day and over 60 participants attended the book launch that evening. To coincide with the book launch, a public exhibition of posters and artefacts related to the project ran for three days at the offices of the Irish Human Rights and Equality Commission in Dublin. Following its success, the exhibition was reshown in Galway in month 42. Finally, an article on the project's methodology was submitted for peer review to Qualitative Research, and a project methodology toolkit was published on the project's website.
In 2017, the project published a special issue of the International Journal of Law in Context. The articles in the special issues examine the areas of legal agency, state intervention in the private lives of people with disabilities and the right to consent to and refuse medical treatment and consent to sex. The content behind these articles has been presented by the project team at VOICES events and elsewhere and it is hoped that this, along with their publication, will stimulate further discussion and impact law and policy in these areas given the level of national and international policymakers and academics in attendance at the events. The final edited collection entitled ‘Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories’ was published by Routledge in July 2018. This collection contains 14 individual stories and responses from project participants on the exercise and denial of legal capacity relating to decisions about contract law, medical treatment, consent to sex and relationships and the criminal justice system.

The project significantly advanced the field beyond the state of the art in two main ways. First, it developed new ideas about how legal capacity can be recognised and supported from the viewpoint of those with direct experience of being subjected to these laws and practices. Second, it provided some answers to previously unaddressed questions in the literature from a human rights standpoint- specifically with respect to the relationship between legal capacity and legal agency, betweeen legal capacity and state intervention in the private lives of adults, and between the concepts of consent and capacity. It can be considered a breakthrough in research on legal capacity as it demonstrates the possibilities of collaborative research with those directly affected by human rights violations – and specifically validates and legitimises in terms of academic scholarship, the ideas of those who have experienced discrimination who propose new ways forward for social and legal change.

The main results of this project have been the development of new approaches to previously un-addressed or underexplored questions in the literature on legal capacity following the entry into force of the UN Convention on the Rights of Persons with Disabilities. These new approaches and suggested ways forward appear in both the theoretical framework articles of the Special Issue of the International Journal of Law in Context and the edited collection published by Routledge in 2017. A key result of this project is that the lived experience of 14 persons with different cognitive disabilities (intellectual, psychosocial, autism and dementia) in exercising or being denied legal capacity across a range of legal systems, societies and cultures, has been made visible – and is recognised as a legitimate and significant contribution to the literature in this field. Those individuals have collaborated with scholars and practitioners to develop concrete, grounded, proposals for legal and social change which must now be engaged with by future scholars in this field.

It is too early to tell what the long-term impact of this research will be at the societal level. However, there are already signs that the project will have a positive impact on future development of laws, policies and practices related to legal capacity in the jurisdictions represented by the storytellers and respondents. Some project participants have already been invited to contribute to domestic law and policy reform efforts in their own countries as a result of participation in the project – and these initiatives, if successful, should lead to much wider societal change.