The goal of the VOICES project was to make visible the lived experience of persons with disabilities in the exercise and denial of their right to legal capacity and to use this experience as a starting point for legal, social and political reform. The key way in which the project sought to achieve this goal was through the pairing of storytellers (those with lived experience who wanted to write a narrative) with respondents (individuals from a range of personal and professional backgrounds, including people with lived experience, who would respond to the narratives developed).
The VOICES project was structured across four thematic areas: criminal responsibility, contractual capacity, consent to medical treatment, and consent to sex and relationships. The stories and responses collected during the course of the VOICES project have been published in an edited collection entitled “Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories”. Throughout the project, the participants presented their ideas and developed their contributions for the edited collection at a series of workshops based on these thematic areas.
Project Values and Theoretical Framework
The VOICES project’s values centred around respect and empowerment to create legal capacity reform. It was important to set out values at the outset to ensure that potential participants knew what to expect from the project. These values were drawn from Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) which guarantees people with disabilities the right to legal capacity on an equal basis with others. The four foundational values of the VOICES project were as follows:
- We believe that everyone has an equal right to enjoy legal capacity.
- We believe in respecting other people’s voices and opinions.
- We believe in empowering people to drive change.
- We believe that people with disabilities should be supported in exercising their legal capacity.
These values were the core principles which underpinned all of the various stages of the project, from design, to implementation, and outcomes. In order to further develop these values and provide context for the stories and responses, the project team developed a theoretical framework. This was centred around three foundational questions, selected as a starting point to address previously neglected aspects of legal capacity law reform. The three foundational questions were:
- What constitutes an exercise of legal agency from an individual?
- What are the justifiable limits on individual agency which can be imposed by the State and apply to everyone, regardless of disability or decision-making ability?
- How can we ascertain whether an individual is giving free and informed consent (necessary to make an action legally binding), without engaging in a functional assessment of that person’s mental capacity?
Working papers addressing these questions were published in a special issue of the International Journal of Law in Context in March 2017. These papers aimed to illustrate the project team’s perspectives on respecting the right to legal capacity in practice.
The core arguments for the working papers were developed by the project team initially and then presented to a small group of individuals from the Advisory Committee and Steering Group and others working in a related discipline in a workshop format. A full draft of the papers was developed based on their feedback for circulation to the full Advisory Committee and Steering Group for detailed comments. The papers were also presented at the Opening Conference and Workshop 1 and feedback from participants at these events was also incorporated. It was after all this feedback was incorporated that the papers were submitted to the journal for peer review.
The ideas in each paper were further discussed with storytellers and respondents at workshops, and some drew on these ideas in their contributions to the VOICES edited collection. As these papers did not address all of the thematic areas of law which the focus of the stories and responses in the project, separate concept notes relating to those other areas of law (e.g. criminal responsibility and contract) were developed for each respective thematic workshop.
Introduction to the Project Team
The project team for VOICES was comprised of a principal investigator, a partner investigator, a post-doctoral researcher, a research assistant, and an administrator. The partner investigator was a researcher based in another institution who was primarily involved in the design stage and the development of the theoretical framework. For the VOICES project, only the research assistant position was full time. Our Project Team included both disabled and non-disabled individuals, but the principal investigator was non-disabled. As with all social issues, where research is led by a principal investigator who is not a member of the respective community, efforts must be taken to ensure that the research is conducted in a truly collaborative manner and as a partnership with the community.
Introduction to the Advisory Committee and the Steering Group
The Advisory Committee and Steering Group were two groups essential to the organisation and implementation of the VOICES project. Members of these groups were world-renowned academics and activists, many of whom are recognised as experts on the CRPD. The project committed to have one annual face-to-face meeting of the combined Advisory Committee and Steering Group. Initially it was envisioned that outside the meetings, the Advisory Committee would have limited involvement in the project. They were invited due to their experience and influence to offer advice and guidance on questions that arose surrounding the theoretical framework of the project and ethical challenges faced by the project team. However, members of the Steering Group were asked to take on a more active role in the VOICES project. The initial terms of reference stated that the Steering Group would take part in regular meetings to review the project’s progress, to discuss future plans and how to achieve the project’s goals. It was also envisioned that members of the Steering Group would actively engage with the project’s content by co-authoring articles, reading draft chapters, and attending events whenever possible.
In practice both members of the Advisory Committee and Steering Group took on more active roles in the project, and over the course of the project the distinction between the two groups’ roles faded. Therefore, in practice, members of both the VOICES Advisory Committee and Steering Group became mentors to participants, and provided targeted, individual guidance and advice to the pairs when needed. They co-authored papers, chapters in the edited collection, and working papers where possible. For example, members of the Advisory Committee published companion pieces which represented different perspectives to the ideas set out by the project team in the theoretical framework in the special issue. Members of the Advisory Committee and Steering Group also became respondents, which had both benefits and challenges.
Other projects may wish to develop a Steering Group after the recruitment stage of the project, and to have the Steering Group consist solely of several storytellers and respondents from the project. Accordingly, if the membership of the Steering Group were to consist entirely of storytellers and respondents it may be helpful to have an Advisory Committee whose members do not take on other roles in the project.
Funding
The VOICES project was funded under a European Research Council Starter Grant. Under this grant the project received funding to cover the travel, accommodation, and associated expenses of its participants. This funding was available to both storytellers and respondents; however those with access to other institutional funding to support their attendance at events were encouraged to use it. This allowed the project to devote any additional funds to supporting personal assistants’ travel and accommodation or other reasonable accommodation and accessibility requests.
It should be noted that the core project team were the only people paid for their time while working on the project. This was due to restrictions on the funding available and ethical considerations regarding paying research participants. However, the project would encourage anyone engaging in other research of this nature to consider payment for participants with lived experience who might otherwise be unable to participate in the project. For example, in many disability research projects, disabled participants are not paid, but researchers, who are often predominantly non-disabled people, do receive payment for their contribution, whether directly from the project or through recognition of their contribution to the research in their existing employment.
Some participants in VOICES worked in roles (predominately research and academic roles) which facilitated their attendance at project events or time spent contributing to chapters, while for others this was not the case. To facilitate participants whose employers did not support their participation in this project, the project compensated participants on request for additional expenses incurred due to attendance at workshops.
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