Report
Teaser, summary, work performed and final results
Periodic Reporting for period 3 - VOICES (Voices Of Individuals: Collectively Exploring Self-determination)
Teaser
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)...
Summary
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
Work performed
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 publ
Final results
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.
Website & more info
More info: http://www.ercvoices.com.