Lived experience influencing law reform: insights from a collaborative research project

Abstract

This article will explore the methodologies employed in a collaborative research project on lived experience of exercise or denial of legal capacity, known as the Voices of Individuals: Collectively Exploring Self-determination (VOICES) project. In so doing, the project’s research team will reflect on key decisions about the project’s background, design, implementation (including the recruitment and selection of participants, workshops and editing contributions) and considerations for further research.

Keywords

Disability human rights collaborative research law reform narrative lived experience

Introduction

This article considers the experiences of a group of researchers engaged in a collaborative project on persons with disabilities’ experiences of exercising, and being denied, their right to legal capacity. The Voices of Individuals: Collectively Exploring Self-determination (VOICES) project emerged from a context where there is a growing recognition at the international level of the need to centre the voices of those with lived experience in research on legal capacity and related law reform. The project situates itself in human rights discourse emerging from the UN Convention on the Rights of Persons with Disabilities (CRPD).¹ This itself creates challenges, as by nature, international human rights instruments, and even the interpretative guidance issued by human rights treaty bodies, provide high-level principles but do not precisely define how these principles can be implemented in specific legal, political, social, economic and cultural contexts. Further challenges in lived experience research on legal capacity arise from the recognition that those affected by these laws – particularly persons with disabilities – do not represent a homogenous group, and that the forms of support desired to exercise legal capacity vary widely within this community and across the world. Nevertheless, the VOICES project seeks to grapple with these challenges, because of the importance of changing the narrative about how laws, policies and practices relating to legal capacity should be developed and generating ideas for change in collaboration with those directly affected by existing discriminatory laws.

In recognition of these complexities, the VOICES project is just the tip of the iceberg when we consider the kind of research that is needed to respond to global challenges in the implementation of Article 12 CRPD.² We present our experiences and reflections as the VOICES research team in this article in order to start a broader conversation about the kinds of ethical, responsible, and rights-based research that is required to further the discourse on universal legal capacity. We hope that these experiences will spark ideas and discussions with others about possible collaborations and future directions for legal capacity research to influence reform, grounded in lived experience.

Project background

The VOICES project was born out of some important frustrations the Principal Investigator was experiencing in her work on legal capacity research and the development of related law and policy.

I noticed that at a series of conferences and workshops on the topic, academics and civil society representatives in the room mostly agreed on the universal nature of the right but were often lacking imagination in how it could be realised in practice. In these rooms I felt the speakers were mostly ‘preaching to the converted’ without following through to do the important, and challenging work on how this right could be realised in legislative frameworks. On the other hand, when work was happening on developing domestic legislation to address this right, researchers and activists are often dealing with policy-makers who did not at all agree that legal capacity was a universal right – and there seemed to be no real way to merge these two distinct ‘worlds’. (Flynn, 2016)

In order to respond to these challenges, the VOICES project was developed with a mission 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 objective 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). This process took place over two and a half years, in which the pairs attended three project workshops, to develop, refine and present their ideas, ultimately resulting in the completion of a chapter for the project’s edited collection.

As legal capacity is a global issue, the project took a global approach to this research, and ultimately, storytellers and respondents from 11 countries, contributed to the edited collection published by the research team. The project also sought to be as diverse as possible in the range of experiences which were captured, to make visible the intersectional experiences and use intersectionality as an analytical tool throughout the research. Apart from the geographic, racial and ethnic diversity of the participants and diversity of experiences of disability, the project also sought to reflect the experience of different genders and social classes, and to consider how different legal, economic, political and cultural contexts impacted on individuals’ experiences in the exercise or denial of legal capacity. While some participants reflected on the gendered and class-based dimensions of their denials of legal capacity in their writing (Lowndes and Strnad, 2018; Seshasayee and Jesperson, 2018), intersections between race/ethnicity and legal capacity denials were not explored. This may be in part explained by the fact that none of the storytellers identified themselves as a racial or ethnic minority in the countries where they lived. Overall, the project’s diversity, and the resulting attention paid to the intersectional experiences, was a key strength of the project, but also presented some significant challenges, discussed in further detail below.

Project design

In developing the design and exploratory methodology for the project, the research team faced a number of important challenges and considerations which are worth exploring here. These include the composition of the research team, the decision to frame the project around storyteller and respondent pairings, the structured approach to the design of the project, and the processes for securing ethical approval. Each of these issues will be discussed in turn.

At the outset it is important to acknowledge, however, that VOICES is not an example of participatory action research or co-production. Instead, the team’s perspective is that the project represents a collaborative, human-rights based form of disability research which is distinct from related methodologies of inclusive research, peer or survivor-led research and narrative research (Goodley et al., 2004; Johnson, 2009).

Composition of the research team

The research team consisted of the Principal Investigator, a partner investigator (who contributed to the theoretical framework), a postdoctoral researcher and a research assistant. The VOICES project was designed in a context where there were few concrete examples of partnerships between disabled activists and academics on the specific issue of legal capacity law reform.³ While the project aimed to be as participatory and emancipatory as possible, it must be acknowledged at the outset that the Principal Investigator is a non-disabled researcher who wanted to collaborate with persons with disabilities and give space for their voices to be heard and valued. Throughout this project, the team was aware that the role of non-disabled researchers in the disability rights movement has often been fraught and tense (Barnes, 2003; Stone and Priestley, 1996). This is especially so given that the impetus for persons with disabilities to come together to organise and reflect is often a desire to be free from the influences of others – including family members, professionals, charities and service providers, who seek to advocate on their behalf. Therefore, at every opportunity, the Principal Investigator emphasised that this was not a project designed to conduct research ‘on’ persons with disabilities – but to give them a space to share their stories as authors of research outputs.

In so doing, the research team reflected on the two questions posed to non-disabled researcher allies by Jenni Morris (1992: 165): ‘(a) Non-disabled academics and researchers should ask themselves where are the disabled researchers? students? academics? They should recognise and challenge both direct and indirect discrimination . . .(b) Non-disabled people, if they make their living from being involved in the field of disability, should ask themselves whether/how they can do research which empowers disabled people’. In response to the first question, the team sought out disabled researchers, students, academics, activists, artists and persons with disabilities with a personal story related to legal capacity to participate in the project. In response to the second question, the goal of the project was to explore the lived experience of persons with disabilities in exercising or being denied legal capacity – with a view to developing recommendations for social, legal and political change which empowers persons with disabilities and recognises universal legal capacity.

The VOICES project also aligns with Shakespeare’s perspective on non-disabled researchers as allies: ‘The idea that having an impairment is vital to understanding impairment is dangerously essentialist. The skills and knowledge of an experienced and sensitive researcher, disabled or non-disabled, are required to develop an appropriate account’ (2006: 195). While the project was led by a non-disabled Principal Investigator, the VOICES research team included both disabled and non-disabled researchers, and experienced disabled activists and scholars provided input through the project’s Advisory Board and Steering Group. The various members of the research team also brought a diverse range of personal and professional experience to the project, including knowledge of different languages, cultures and legal frameworks, different disciplinary backgrounds, and various personal and professional networks which were drawn upon to source participants for the VOICES project. As it happened, all the members of the team were women.

Research funding and staffing

This research project was funded through a Starting Grant from the European Research Council. The funder set parameters on the kinds of research costs which were deemed eligible. As a result, only the members of the research team were paid for the work conducted on the project. Although, as set out above, there were three researchers employed by the project, only one member, the research assistant, worked full time on this project. Neither participants in the project, or members of project’s Advisory Board and Steering Group, were paid for their time, although travel, accommodation and subsistence payments were provided to enable their participation in the project. In general, this reflects the principle that paying research participants to share their experience is considered ethically problematic – as a financial incentive to participate in research might mean that some participants agree to take part due to economic hardship, rather than a real desire to engage in the research project. However, there is a counterargument to be made, which is reflected in disability studies literature, concerning the disparity of power in research projects, particularly on disability, where disabled participants are not paid, but researchers, who are often predominantly non-disabled, do receive payment for their work (McLaughlin, 2010).

The research team carefully considered these issues and took a number of steps to address this. First, the Principal Investigator made sure that disabled researchers were welcomed as part of the research team. Second, the team reaffirmed that there should be no qualitative difference in the level of participation expected or reimbursement of expenses provided for storytellers and respondents in the project. However, in practice, some participants were in paid roles where their employers facilitated their participation in the project, whereas others were not in this position. Third, the team responded to any requests for reasonable accommodation from participants with disabilities (whether storytellers or respondents) in terms of the additional expenses they might incur for their participation in this research. On rare occasions, where participants alerted the team that they would have to forego a day of paid work in order to attend project events, the project made every effort to compensate the participants for additional expenses incurred. It was through these kinds of arrangements and flexibility that the research team sought to address potential power disparities concerning payment and reimbursement of expenses for participation in the project (VanderWalde and Kurzban, 2011).

A pairing approach to collaborative research

A relatively unique element of the original proposal for the VOICES project was the decision to focus on recruiting participants in storyteller-respondent pairs to develop jointly authored chapters for an edited collection to be published at the end of the project (Bigby and Frawley, 2010; Williams et al., 2005). This pairing approach was developed as a result of the Principal Investigator’s involvement in a Feminist Judgments project (Enright et al., 2017), where scholars re-wrote judgments for existing legal cases from a feminist standpoint. As part of that project, ‘judges’ had the option to work with a commentator, who provided a different perspective on the re-written judgment, for example, by locating the judgment in its historical, social and cultural context, or linking the decision to values and principles in feminist theory or human rights norms. One of the ‘judges’ in that project had the opportunity to interview the plaintiff in a major constitutional rights case about her experience (Cloatre and Enright, 2017), which made visible some interesting contrasts between how the plaintiff perceived her experience of the law, and the way her story was presented in the original judgement. Drawing on these two elements, the idea of a commentator responding to an interpretation of the law in a specific case, and the notion of developing a first-person account with an individual who had taken the original legal action, the VOICES project developed the concept of storyteller-respondent pairs who could write about legal capacity.

In general the VOICES team felt that collaboration, in particular when writing about personal experiences, facilitates a different kind of analysis because the new perspectives which arose through the collaborative process enabled storytellers to locate their experience in a broader context. In practice, this was supported by the fact that pairs often came from vastly different personal and professional backgrounds and jurisdictions. A value inherent and integral to the research process was the concept of collaboration and teamwork between storytellers and respondents. The storyteller was never intended to simply share their story and step away. The chapters were envisaged as a product of discussion and analysis between two people with the storyteller taking an active role in the recommendations for reform and analysis. The respondents were also encouraged to further explore elements of the storyteller’s experience with the aim of helping them reflect on those experiences and possibly unearth influential moments, turning points and triggers that may have otherwise been overlooked.

During the course of the project, the research team reflected on the decision to conduct this research with pairs, and the need to address potential or perceived power imbalances within the pairing process. We were anxious to ensure that everyone was aware that people with lived experience could take on the role of either a storyteller or respondent, and to counter any perceptions that all respondents were positioned as non-disabled experts on some aspect of the law. In practice, the respondents came from a wide range of personal and professional backgrounds, disciplinary perspectives and several had their own experiences relating to the exercise or denial of legal capacity; and many storytellers were also well-recognised for their expertise, having written and spoken publicly about their experience in various national and international fora.

The team also felt it would limit the number of stories that could be included if all storytellers had to have legal knowledge or awareness of the CRPD to analyse their own experiences. While some storytellers were very aware of legal remedies and the rights enshrined in the CRPD, others did not have that information when they joined the project. Similarly, it would limit the number of individuals who could be respondents if there was a requirement of lived experience of disability or denial of legal capacity. Therefore, to ensure as diverse a range of participants and perspectives as possible were included and preserve the unique combination of lived experience and legal analysis, two categories of participants were maintained.

As noted above, the VOICES project aimed to include as many diverse perspectives as possible. Understanding the context in which people experience oppression is crucial to comprehend the situation on which a person has been denied their rights and fundamental freedoms. While all the storytellers had shared experiences as persons with disabilities, they and their respondents had also built their lives around different social, cultural and legal contexts and these needed to be reflected in the research.

One of the aims of the VOICES project was to challenge the status quo, therefore the team sought to reflect intersectionality in the research (see Hill Collins, 2000; Crenshaw, 1991). ‘As an activist project intersectionality provides analytical tools for framing social justice issues in such a way as to expose how social exclusion or privilege occurs differently in various social positions, and it does this by focusing on the interaction of multiple systems of oppression’ (Romero, 2017: 1). For most participants in the VOICES project, social contexts, power imbalances, relationality, social inequality and social justice intersected and impacted on their experiences of exercising or being denied legal capacity.

The use of intersectionality, at least, as critical praxis and critical inquiry (Hill Collins and Bilge, 2016) seems necessary for this kind of research, and for disability studies in general. The experience of ableism differs depending on the position that a person has in society (including race, sex, class and other factors). The violation of rights that participants in the VOICES project have experienced cannot be understood without considering the interaction of different axes of subordination and systems of oppression and privilege in which they are immersed, and the research team encouraged pairs to reflect on these aspects of the experience in their contribution to the edited collection.

Structured approach to research design

While the VOICES project’s core goal is to make visible the experiences of persons with disabilities in exercising or being denied legal capacity, the research team are conscious that it has done so in highly structured, pre-determined ways. The topic areas of criminal responsibility, consent and contract law were already chosen by the Principal Investigator at the outset of the project, and stories were deliberately sought that related to one of these areas of law. These areas of law were deliberately selected in advance because they represented some of the most obvious gaps in the literature and discourse on the universal approach to legal capacity (de Bhailís and Flynn, 2017), and also because the decision to use this structured framework made it easier to explain to potential participants what a story about legal capacity might contain.

While the project left open a space for new topics to emerge, storytellers were only chosen where they had an experience that clearly related to the exercise or denial of legal capacity that related in some way to one of the chosen topic areas. A degree of flexibility had to be provided in determining whether the stories and experiences were squarely related to ‘legal capacity’ and the relationship with the topic area (e.g. for some of the contract and relationship stories) was sometimes relatively tenuous. Nevertheless, the parameters of the project and its scope and focus were determined in advance by the Principal Investigator, and participants’ contributions were framed based on these decisions regarding the research design.

The purpose of this project was never to conduct research on persons with disabilities. The VOICES project merely sought to make visible the lived experience of persons with disabilities and how this relates to law and policy on legal capacity. Therefore, persons with disabilities who participated in the project were individuals who wanted to collaborate with others to produce narratives and critical legal or social policy responses on the subject of legal capacity. As such, they were recognised as the authors and co-authors of the VOICES research outputs, and active participants in the VOICES research process, rather than objects or subjects of research themselves. Relatedly, all of the individuals in the project published under their own names. This was important to ensure that the storytellers retained (or in some cases, regained) control over their story by telling it themselves. Many storytellers had decades of experience in having stories told about them by others, and through publishing under their own names, they could decide what parts of their story they wanted to tell, which are often very different to the stories told about them by other people.

Ethics approval

As the VOICES project is at its core about consent and recognition of capacity, a key ethical issue throughout the project has been ensuring that participants have been supported to meaningfully consent to engage in this research. The project involved the direct participation of individuals who may have been deemed by the law to be ‘incompetent’ in one or more areas of decision-making. However, since the purpose of the project is to challenge these assumptions, we did not exclude any participant who wished to join the project who wanted to share their experience of either exercising their legal capacity or having their legal capacity restricted or denied, as long as the individual was willing to consent to participation in the project. Nevertheless, this approach led to some challenges in communicating the nature of the project to various bodies responsible for granting ethical approval, including within the funding body and the university where the research took place.

One such communication from an ethics approval body stated ‘Please note that for “incompetent” participants the informed consent signed by the person responsible for them is still mandatory’. This statement was made after lengthy documents were submitted by the Principal Investigator outlining the careful ways in which consent would be sought for participants who had been deemed incompetent by the law in one or more areas of decision-making. Such a statement appears to misunderstand or misinterpret the nature of the VOICES project in the first place – which is to challenge such determinations by the law.

Ultimately, the project received ethical approval from the funding body which supported the research, and from the academic institution where the research team was based, on the understanding that all co-authors in the project would be supported by the VOICES team (including through the recognition of diverse communication methods) to make an informed decision as to whether they wished to publish their jointly written contribution in the project’s edited collection. It was made clear to the various ethics committees who approved this research that no one from whom the researchers could not elicit informed consent would be asked to either share a story or respond to a story in the VOICES project.

Implementation

Selection of participants

Participants were recruited through both an open call and targeted recruitment via the advisory board, steering group and the research team’s networks. Participants were asked to self-select their role as storyteller or a respondent. This was in recognition of the fact that a person with lived experience of disability could be a respondent and that those with professional experience as researchers, frontline workers or practitioners could also have lived experience. In practice, this alongside our targeted recruitment and specific call for a range of personal and professional backgrounds led to a very diverse range of participants from over five continents applying to the project. As part of their application participants had to agree to the values of the project, the ground rules for workshops, working in pairs and publishing under their own name. This was the first phase of consenting to take part in the VOICES project.

That contributors published their experience under their own name was central to the project’s ethos and values. However, it has to be acknowledged that this principle came at a cost which resonated from initial recruitment through to making the final edits. Initially some individuals approached the project expressing an interest in participating, however, due to personal circumstances they were not in a position to publish under their own name. Other high-profile potential applicants were unable to publish their story as their public profile made attempts to ensure the anonymity of other parties in the story impossible. To mitigate the effect of this, the team carefully considered if some participants could use pseudonyms; however, we felt that it would be unfair to ask some to identify while others did not and that overall it was more important, for the reasons outlined above, that all contributors took public ownership of their stories.

Notwithstanding these challenges the project received a high volume of quality applications. Although the original project proposal had aimed to form eight pairs – two for each of the four thematic areas – due to the level of interest 18 storytellers and 18 respondents were invited to the first workshop. From this group, 16 pairs were selected to work on the project and 14 produced chapters in the final edited collection.

Support and accessibility

One of the biggest limitations imposed by the project’s final output being an edited collection was that each participant had to be in a position to write or dictate a piece that could be published. In effect the team believes that this meant that many people with high support needs did not feel they could be part of the project. Applications were received from a number of individuals with complex support needs and unfortunately, despite the best efforts of their supporters and the team, they were not able to attend the first workshop and therefore, find a respondent to work with in the project. This was due to a range of personal circumstances and in some cases the need for specialised equipment or accommodation, or the permission of gatekeepers to attend the event, which could not be secured in time to facilitate attendance at workshops.

For others, participation could be facilitated via supporters and adjustments to the event schedule or reasonable accommodations. The research team acknowledges that the contributions of these supporters made the project possible and many went above and beyond their role to ensure the person they were supporting could meaningfully participate. While some participants travelled and attended the workshops with their own supporters, others asked the team to identify a supporter for them at the workshops. The team relied on the invaluable support of PhD students and other colleagues to fill these roles and where possible the same supporter was assigned to the participant each time they attended a project event to allow them to build a rapport.

All supporters were briefed on the values of the project and what a supporter’s role was in relation to the participant’s contribution. While, as noted, the team was mindful of the potential distress that could be caused by introducing new supporters, particularly at an advanced stage of the project, we also paid close attention to those with existing relationships to ensure boundaries were maintained. A particular example of this is where a supporter, who often knows a person’s story very well, is relaying some information on behalf of the individual or interpreting for them and to help the audience they will add detail or context to what was originally said. This is not done with the intention of breaching a confidence or undermining the individual, rather, they are being helpful and explaining key details. However, the risk is that the individual never intended to disclose this information and the team was always mindful of this and took steps to address situations like this wherever they arose throughout the project.

Workshops

The project was structured over a series of workshops. These included the initial pairing workshop, four thematic workshops and the final book editing workshop. Each workshop consisted of a public and a private day. The initial pairing workshop commenced with a public day where the research team outlined the background and theoretical framework for the project. This public session also included presenters who relayed personal experiences of the law, apart from the chosen storytellers, to give context to the law’s application – and also, to illustrate to the project participants different ways in which stories about the law could be told. These included theatrical narrative devices, life stories illustrated with photographs and conversational style presentations with a partner.

The following day was a private workshop where storytellers and respondents met formally for the first time. This was the first opportunity for participants to modify or add issues to the project’s ground rules. To facilitate this an Easy to Read version of the ground rules was printed and pinned to the wall. These were discussed with the group and any additions or modifications were made directly onto the print-outs. Participants were invited to sign additional sheets of paper around the ground rules on the wall by way of consent. This was a critical step regarding consent to participate in the project given the decision not to use individual consent forms. Instead it was decided that consent would be sought and obtained on a phased basis throughout the project starting with the application stage, continuously reinforced using ground rules at workshops, and culminating with the participants signing the contributor’s agreement for the book. This decision is based on the often fraught history associated with signing consent forms for people who have been denied legal capacity, particularly in the area of consent to medical treatment (Faulkner, 2004).

Over the course of the private day of the first workshop, participants were introduced to each other and worked together in pairs and small groups to discuss case studies relating to the four themes. Those selected to attend the workshop were asked to provide a photograph and some personal information, including an autobiography, for a photobook. The photobook was circulated to the participants ahead of the workshop and they were encouraged to identify potential collaborators.

At the end of the day each participant had to identify three preferences for a collaborator in the project and the team then matched these preferences as much as possible while giving preference to the storyteller’s selection. There was no restriction on pairs from different countries working together if they were comfortable using Skype or other means of communication and had indicated a preference to work together. However, the project identified the need for knowledge of the legal and cultural context in some instances and members of the Advisory Board and Steering Group from the storyteller’s country were assigned as mentors to provide guidance on these issues.

Participants were then notified of their pairing and given a ‘Guidelines for Pairs’ document. A critical element of the ‘Guidelines for Pairs’ document was the project’s policy for either a storyteller or respondent withdrawing from the project. The project adopted a policy which set out that if storytellers chose to leave, the respondents would not continue with the project in that role; however, if a respondent wanted to withdraw, the storyteller would be offered a new partner if they wished to continue. In practice, this policy was applied when two storytellers chose to leave the project for personal reasons and therefore, were not replaced. However, when some of the original respondents paired with storytellers chose to leave or step back from the project, these changes were accommodated by sourcing replacements or adding additional respondents as agreed with storytellers. Sadly, one of the storytellers, Rusi Stanev, died during the course of the project. We were fortunate in that he had already produced some written material for his chapter, and his respondent Sheila Wildeman, in discussion with Rusi’s supporter and lawyer Aneta Genova and the research team, decided to continue their work and produce a chapter in his memory (Stanev and Wildeman, 2018).

For each of the remaining workshops, the private day was held first following feedback from participants at the first workshop. The private days were, as the name would suggest, closed workshops where the team endeavoured to create a ‘safe space’ for the pairs to work together and explore aspects of the story and response that may never be published. Apart from the participants and the research team, admission to the workshop was confined to a creative writing facilitator, supporters and two invited speakers to provide fresh perspectives on the legal issues discussed by the pairs. These two invited speakers typically included a leading figure in the field with experience of working on the CRPD and a scholar working in the thematic area of law (e.g. criminal or contract law) who may or may not have experience of the issues facing persons with disabilities.

The sessions at the thematic workshops included working to develop a narrative and sessions which specifically focused on the legal context and ideas for reform. During these sessions, as with the project as a whole, pairs were encouraged to collaborate on all aspects of their contribution. Therefore, both the storyteller and respondent attended all the sessions together in their pairs – at no point did the project divide the storytellers and respondents into separate groups, ensuring the pairs could maximise the time available to work together. For the public sessions, pairs presented a preliminary outline of the story and response to a general audience. For many of the storytellers this was the first time they would share their experience publicly or present in front of an audience. Therefore, some of the time on the private day was also devoted to developing these presentations and honing the participants’ presentation skills.

Between workshops each pair was supported by a member of the research team. This included email updates, reminders of upcoming deadlines, facilitating pair communication through setting up skype sessions etc., transcription of storytellers’ narratives, and suggestions of relevant literature. Differences in language and the need to understand the storyteller’s context (including relevant laws, cultural beliefs and practices) also posed a challenge – and the team supported the use of interpreters, mentors and supporters with local knowledge, which was key to addressing this issue during the editing stage.

Artists

There are a multitude of ways to tell stories and share experiences, emotions or reflect a particular understanding of a concept. To capture this and to celebrate disabled artists the team sought to incorporate a piece of art into the public day of each workshop or conference. Over the course of the project it showcased visual art, poetry and dance in relation to the area of legal capacity or by disabled artists. To coincide with the launch of the project’s edited collection, an exhibition was organised, in which photographs of the pairs were displayed, alongside an object that represented a key aspect of the storyteller’s experience as reflected in the book. This ensured that elements of artistic practice were incorporated throughout the project as a whole to represent different dimensions to the stories and responses included in the research.

Chapter editing

Following their thematic workshop, pairs were asked to develop the first draft of their chapter within 6 months to allow for staged feedback from the research team, and from the pair’s mentor and/or other members of the Advisory Board and Steering Group. These first drafts were revised based on feedback and resubmitted to the research team prior to a final editing workshop, where the remaining possible changes to the contributions were discussed. This workshop also provided an opportunity for pairs to give each other peer feedback on their drafts. At this workshop, pairs also presented the common issues and challenges reflected in their written contributions to a public audience. Through this process, the pairs and research team were able to identify common themes and emerging trends within their thematic areas and across the project as a whole. This also assisted the research team in developing the contextual chapters which framed each of the thematic sections of the final edited collection.

The VOICES research team encountered several challenges in editing this collection. Our goal was to respect the authentic storyteller voice, and we debated whether and how to edit grammar and syntax in storyteller narratives and the potential for this kind of editing to interfere with the individual’s natural storytelling style. Ultimately, we decided to take a very light touch approach to editing the storytellers’ input. However, we did suggest minor edits for clarity where, for example, we felt the readers would not understand the use of a particular term. Storytellers had often shared much more detail with their respondents than was included in their final story. Therefore, as part of the editing process, the team paid careful attention to ensure that respondents did not introduce any additional information about the storyteller that had not been first disclosed in the story portion of the chapter. This was essential to ensure that storytellers retained full control of the information about their experience which was included in the final publication.

Several respondents sought guidance from the research team on how to frame arguments about the application of the CRPD to the storytellers’ experience, and we were conscious of the risk of over-influencing respondents with our interpretations of Convention rights. In addressing this challenge, it was useful to recall that all participants in the project had committed to the project values, which were drawn from Article 12 CRPD and General Comment 1. Therefore, as a team, we did provide respondents with more detail on our interpretation of the UN Committee’s position as applied to particular situations described by storytellers in their input – and where respondents had arrived at different interpretations, we asked them to cite support for their interpretation and position. Respondents from a non-legal background or from another jurisdiction sometimes asked for assistance with interpreting legal provisions of relevance to the storyteller’s experience and if the research team was not familiar with the context we often drew on legal experts from the Advisory Board and Steering Group to provide more detail.

A further challenge for respondents was the fact that many of the storytellers’ experiences could be perceived to conflict with how certain rights were framed in the CRPD – particularly where storytellers reported positive experiences in segregated disability services. Ultimately, in light of the shared commitment to the project’s values – which included respect for the storytellers’ experience – the team did not ask respondents to gloss over these differences – but rather to address perceived tensions, and to consider with the storyteller, whether, if alternative, CRPD-compliant supports had been offered to them, these would have been preferable to the treatment they ultimately received.

While some storytellers wrote their own narratives in other instances, respondents were transcribing narratives told to them by storytellers. Respondents engaged in this work were conscious of the need to capture the authenticity of storyteller’s voices. In other cases, respondents felt the storyteller’s narrative should stand alone and that they had nothing to add. Power imbalances were discussed throughout the project, as all pairs were sensitive to the fact that only one person, the storyteller, was disclosing personal experience in their written contribution and that this could lead to an imbalance of power between the storyteller and respondent.

Finally, a constant challenge throughout this project was the potential for third parties to be identified in the chapters, especially since the storytellers were writing under their own names. This issue was discussed at length with the pairs and the team strove to find a balance which protected the authors and team against potential defamation charges, while giving individuals the freedom to tell their stories in their own words. The research team was also mindful of the potential personal repercussions for storytellers if they published information that would upset or offend a close friend or family member who were often also people they relied on for support. The legal and personal risks of such statements were discussed with the authors throughout the writing and editing process and as a result some storytellers decided to omit key elements of their experience, while others decided to retain them, given their significance as part of the overall story. We also developed an annex to contributor’s agreement for authors which outlined three options– that no third parties were identifiable from their chapter, that they had discussed their chapter with any identifiable third parties and that those third parties were agreed with their inclusion or finally that although third parties were identifiable, the authors had chosen not to discuss the chapter with them but indemnified the editors against any potential repercussions of this action. This approach was taken to reflect the values of the project regarding individual responsibility and risk-taking, while ensuring that the publication could proceed.

Outcomes and impact

At the time of writing, the true extent of the project’s outcomes and its affects are not yet known. It is highly likely, and highly desired in some instances, that the project will continue to have an effect and unexpected outcomes long after its funded period. To date the most obvious and important unexpected outcomes from the project are the relationships that participants have developed with each other and the networks they have established through events – either project-based events or events where they have been invited to speak about their experience in the project. As a consequence of sharing their personal experience publicly at project workshops or promoting their chapter at other events, many have unearthed an interest in advocacy and activism and developed new skills in this regard. While the pairing process was in part designed to create allies on the road to legal change, many other relationships have been built with supporters, policymakers and many others which we hope can be sustained beyond the project’s lifetime. A notable feature of all of these relationships has been that they cross social barriers and geographical borders and form global solidarity founded on shared experiences, values and an appetite for change.

Participants also developed a drive for activism and creating social change. An unanticipated challenge arising from this is how to support participants who perceive little or no change in their circumstances or at a systemic level even though they have shared so much of their life experience. The task of supporting participants to develop self-care strategies has been taken on by the VOICES team and the fundamental principles of influencing policy, building a movement and self-care were discussed in detail during the a workshop held alongside the project’s exhibition and book launch. We felt it was important for participants to be aware of any potential negative repercussions of publication and to develop strategies for how they will deal with this if necessary. Within these strategies the team was acutely aware of the need for participants to identify systems of support in particular given the nature of research project funding and fixed term research contracts. Only one member of the research team – the Principal Investigator – is a permanent member of staff and therefore, as team members change roles and move on to new research projects they may not be as easily contactable about issues when they arise. The team discussed with participants who within their existing networks they might turn to, if they are concerned about how their story is being used or if they experience setbacks in their campaigning.

The need to leverage the stories and responses in the edited collection to create change was always a focus of the research team. As a result, during this final event, the team invited policymakers or policy influencers from the storytellers’ jurisdictions to a ‘Meet the Authors’ event. During this closed workshop session, pairs sat with a policymaker or influencer to discuss their contribution and how this could be used for meaningful reform. These policymakers and influencers came from a range of professional backgrounds including members of the judiciary, the police force, legal professionals, journalists, consumer and aviation regulators and activists. The group as a whole also discussed common concerns or issues faced by those working in this area and worked towards developing solutions that the policymakers could draw on in their own work. This session was intended to be the first step in using these experiences to advocate for reform.

Conclusion

As bell hooks explains, ‘telling stories is one of the ways that we can begin the process of building community’ (hooks, 2010: 49) and in this project, the research team and participants set out to create a community of allies in relation to legal capacity reform on a global scale. Hearing one another’s personal experience promotes an atmosphere of cooperation, deep listening and solidarity. One of the most striking findings of the VOICES project is the similarities in the participants’ stories – across different continents, legal systems, cultural norms, genders, classes and different experiences of disability. ‘Stories help us to connect to a world beyond the self. In telling our stories we make connection with other stories’ (hooks, 2010: 53). The journey of developing stories and responses undertaken in the VOICES project has enabled individuals to see that theirs was not a unique or isolated experience and that they have peers and allies who understand this experience (McDonagh, 2018). It also influences others in positions of power who, while they may not have had the same personal experience, can be motivated by hearing these stories to change their perspective and ultimately to create change. With this in mind, we encourage others who are researching in disability human rights and other similar fields to consider how ownership of personal stories and their use to develop ideas for change can be furthered in future research and hope this article goes some way in exploring how that can be achieved.

Footnotes

Authors’ note

The contents of this publication are the sole responsibility of the VOICES project and can be in no way taken to reflect the views of the European Union.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme grant agreement no 638768. This publication has been produced with the assistance of the assistance of the European Union. The contents of this publication are the sole responsibility of VOICES project and can in no way be taken to reflect the views of the European Union.

ORCID iDs

Eilionóir Flynn

Clíona de Bhailís

Notes

Author biographies

Eilionóir Flynn is an Established Chair at the School of Law and Director of the Centre for Disability Law and Policy, National University of Ireland Galway. She is a graduate of University College Cork (BCL, PhD), and published her first book with Cambridge University Press in 2011, entitled ‘From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities’. Eilionóir’s current research interests include legal capacity, advocacy, reproductive justice and the intersectionality of disability, gender and ageing. Her work has been awarded funding by the European Research Council, Wellcome Trust, the Irish Research Council and the European Commission, among others. She can be contacted at eilionoir.flynn@nuigalway.ie

Clíona de Bhailís is a PhD candidate at the Centre for Disability Law and Policy (CDLP), NUI Galway. She has received Irish Research Council funding for her research focusing on supported decision making for young people with disabilities and the UN Convention on the Rights of Persons with Disabilities. In her previous role with the CDLP she worked as a Research Assistant on the European Research Council funded Voices of Individuals: Collectively Exploring Self-determination (VOICES) project. She holds a Bachelor of Civil and graduated with first class honours from the LL.M in Public Law in NUI Galway in 2013 with a minor thesis in the area of legal capacity and access to justice for people with disabilities.

María Laura Serra holds a PhD in Human Rights from Charles III University of Madrid and is a Human Rights Officer at ONCE Foundation (Spain). She is an External Consultant for CERMI Women Foundation, Spain and a former postdoctoral researcher on the VOICES project.

References

Barnes

(2003) What a difference a decade makes: reflections on doing ‘emancipatory’ disability research. Disability & Society 18(1): 3–17.

Bigby

Frawley

(2010) Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual & Developmental Disability 35(2): 53–61.

Cloatre

Enright

(2017) Commentary on McGee v. AG. In: Enright

McCandless

O’Donoghue

(eds) Irish Feminist Judgments: Judges Troubles and the Gendered Politics of Identity. Oxford: Hart Publishing, 95–116.

Crenshaw

(1991) Mapping the margins: intersectionality, identity politics and violence against women of colour. Stanford Law Review 43(6): 1241–1299.

Committee on the Rights of Persons with Disabilities (2014) General Comment No.1—Article 12: Equal Recognition Before the Law. UN Doc. No. CRPD/C/GC/1.

de Bhailís

Flynn

(2017) Recognising legal capacity: commentary and analysis of Article 12 CRPD. International Journal of Law in Context 13(1): 6–21.

Enright

McCandless

O’Donoghue

(eds) (2017) Irish Feminist Judgments: Judges Troubles and the Gendered Politics of Identity. Oxford: Hart Publishing

Faulkner

(2004) The Ethics of Survivor Research: Guidelines for the Ethical Conduct of Research Carried Out by Mental Health Service Users and Survivors. Bristol: Policy Press.

Flynn

(2016) Opening Remarks. In: VOICES Opening Conference. Dublin, 26 February.

10.

Flynn

Arstein-Kerslake

(2014) The support model of legal capacity: fact, fiction or fantasy? Berkeley Journal of International Law 32(1): 124–143.

11.

Goodley

Cough

Lawthom

, et al. (2004) Researching Life Stories: Method, Theory and Analyses in a Biographical Age. London: Routledge.

12.

Hill Collins

(2000) Black Feminist Thought: Knowledge, Consciousness and the Politics of Empowerment. New York: Routledge.

13.

Hill

Collins P

Bilge

(2016) Intersectionality. Oxford: Polity Press.

14.

hooks

(2010) Teaching Critical Thinking: Practical Wisdom. London: Routledge.

15.

Johnson

(2009) No longer researching about us without us: a researcher’s reflection on rights and inclusive research in Ireland. British Journal of Learning Disabilities 37(4): 250–256.

16.

Lowndes

Strnad

(2018) ‘The law is very complicated….’. In: Flynn

Arstein-Kerslake

Clíona de Bhailís

(eds) Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories. London: Routledge, 71–80.

17.

McDonagh

(2018) Remarks at the Launch of Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories. Available at: https://ercvoices.com/events/exhibition-book-launch/ (24 October 2018, accessed 12 May 2020)

18.

McLaughlin

(2010) Keeping service user involvement in research honest. British Journal of Social Work 40(5): 1591–1608.

19.

Morris

(1992) Personal and political: a feminist perspective on researching physical disability. Disability, Handicap & Society 7(2): 157–166.

20.

Romero

(2017) Introducing Intersectionality. Oxford: Polity Press.

21.

Seshasayee

Jesperson

(2018) Getting sucked out of the black hole of India’s legal mental health machinery. In: Flynn

Arstein-Kerslake

A and

Clíona

Bhailís

(eds) Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories. London: Routledge, 165–173.

22.

Shakespeare

(2006) Disability Rights and Wrongs. London: Routledge.

23.

Stanev

Wildeman

(2018) Freedom: a work in progress. In: Flynn

Arstein-Kerslake

Clíona de Bhailís

(eds) Global Perspectives on Legal Capacity Reform: Our Voices, Our Stories. London: Routledge, 197–212.

24.

Stone

Priestley

(1996) Parasites, pawns and partners: disability research and the role of non-disabled researchers. British Journal of Sociology 699–716.

25.

Vander

Kurzban

(2011) Paying human subjects in research: where are we, how did we get here, and now what? The Journal of Law, Medicine & Ethics 39(3): 543–558.

26.

Williams

Simons

Swindon and People First Research Team (2005) More researching together: the role of nondisabled researchers in working with People First members. British Journal of Learning Disabilities 33(1): 6–14.