Establishing Working Relationships

Following the pairing of participants, the project team shared contact details with each pair and gave each pair guidelines for working together. The guidelines required pairs to:

• Meet at least once a month in person, through Skype or on the phone
• Create a plan outlining when and how they would work together on the project
• Write a draft of the story and create an outline of the response prior to their thematic workshop

The guidelines for pairs also outlined what participants should do if they had difficulty working with the individual they were paired with.

The project team also asked each pair to develop their own plan for when and how they would work together on the project during their first meeting. The team asked that the pair plan included details such as:

• How they would communicate – e.g. phone, skype, email, face to face meeting.
• When they would communicate
• Who would take notes of the discussion
• Who would type up the chapter
• How they would comment on each other’s work
• What they expected from the project

The VOICES project team organised for each pair to have their first skype meeting to plan the writing of their story and response, and if necessary provided support for the meeting.

The team also offered pairs the opportunity to be assigned a mentor. Mentors were typically members of the Advisory Committee or Steering Group. They provided information and guidance on the policy area of the narrative or the laws and practices of the different jurisdictions of the storyteller.

Developing Stories and Responses

The thematic workshops were divided based on the four policy areas of the project – criminal responsibility, contractual capacity, consent to medical treatment and consent to relationships.  All four of the thematic workshops were held within one year. Each pair participated in one thematic workshop, based on the policy theme of their story and response.

At each of the thematic workshops the first day was a private day, where the participants prepared and edited their stories and responses in small closed workshop sessions. The second day of each thematic workshop was open to the public and together the pairs presented their stories and responses. The order of the public and private day changed following the first workshop based on feedback from the participants. Participants indicated that it would be helpful to have more time to work together face to face in a closed session before presenting publicly.

Private Day of Thematic Workshops

During the first day of each thematic workshop, sessions were held for pairs to develop both their chapters and their presentations. Within this workshop pairs attended writing workshops, idea workshops and presentation workshops.

The number of participants taking part in each thematic workshop varied based on how many participants had chosen that theme for their story and response. Depending on the number of applicants attending the thematic workshop, pairs were divided into two or three groups to attend parallel sessions on developing their ideas for stories and responses. Pairs were never separated from their assigned storyteller or respondent during these sessions – so both participants in each pair attended the writing workshop and the idea workshop at the same time. This was done to ensure each pair had time to build a rapport, and that each partner was familiar with every aspect of the story and response.

A creative writing facilitator worked with the pairs on the private day. As described previously, prior to the thematic workshops every pair had been asked to follow their plan and to write a initial draft of the story and response to bring to the thematic workshop. These drafts or outlines were further developed and edited during the workshop. These sessions focused primarily on the story but also worked on writing and editing tips and structure. The facilitator provided handouts which helped pairs to structure and find the tone of their contribution. This was of particular importance given the varying levels of writing experience and literacy among participants.

During the workshop sessions, pairs also had time to work with two leading experts – one familiar with the CRPD and one familiar with the policy area generally (e.g. contract) but not with its intersection with the CRPD. Pairs, particularly those in the workshops scheduled later in the project, were encouraged to bring a first draft of their chapter to the workshop for feedback from the project team and invited guests. It is important to note that pairs attended and were encouraged to contribute to all sessions equally. The ethos of the VOICES project was to encourage collaboration between storytellers and respondents and therefore, the ‘Building a Response’ session was not just attended by respondents and creative writing sessions were not just for storytellers.

The thematic workshops were governed by ground rules, which were agreed upon collectively by participants at the first workshop. The ground rules required participants to agree that facilitators should ensure that everyone can have their voices heard. To achieve this the participants agreed on a signal to use if they felt any individual was dominating the workshop, the facilitator would then intervene to ensure that everyone felt they were heard.

At the end of each private day of the thematic workshop there was a workshop session for ‘Reflection and Next Steps.’ During these workshop sessions participants could discuss their experience of the project and thematic workshop, and were asked to summarise their experience in one word. Participants were also asked about their expectations and the project team used this feedback to structure later aspects of the project and to ensure that the project was achieving its intended goals.

Public Day of Thematic Workshops

On the public day of the thematic workshops the pairs presented their story and response publicly for the first time. Some participants had presented their stories many times before, while others had never told their stories publicly. The team also invited experts on the policy area of the thematic workshop to present on their research and included practical guidance for implementing the CRPD in this area, and invited disabled artists to present work which related to the theme where possible.

Difficulties Encountered & Meeting Outside Workshops

Some of the difficulties which arose for pairs working together and organising pair meetings, included:

• Geographical distance
• Different time zones
• Difficulties with communication technology
• Lack of knowledge of partner’s jurisdiction, laws and culture
• Differences in working styles within pairs

While the project team had considered that these problems may arise for some pairs, the team decided that the primary consideration in the pairing process was the preference of the participants regarding who they wanted to work with.

Most participants requested to meet face to face more often than was provided for by the project budget. While this had not been planned for; in some cases, personal or professional circumstances meant that pairs were not able to meet face to face at the thematic workshop and an additional meeting was facilitated to ensure the contributions were not delayed.

Outside of their meeting at the thematic workshops pairs were encouraged to meet or be in contact as much as possible, ideally at least monthly, to work on their contribution. In some cases, this meant email correspondence, phone or Skype calls and pairs who were in the same city met in person. Pairs were encouraged to establish how often they would contact each other and how best to do so in the pair guidelines, as mentioned above. However, in practice this varied across pairs and for some pairs this also changed throughout the project. Some participants had difficulties with communication through Skype and phone meetings or lacked the support and privacy to have these meetings. For some storytellers, the personal supporters they brought with them changed during the course of the project and this sometimes impacted on how pairs communicated.

Where partners spoke different languages or came from jurisdictions that had very different laws and cultures, interpreters, mentors and supporters were available to provide support throughout the project.

Editing Stories and Responses

To ensure that the edited collection would be ready for publication, deadlines were put in place for submission of chapters to the project team. Co-authors of the chapters were then asked to create a plan together for the editing and submission of the chapter. One of the participants advised that it was also important to have deadlines for drafts of sections of the chapters to ensure that each pair had enough time to write the chapter.  Another participant suggested that for future projects it may be helpful to have the mentors of the project or the project team check in with the pairs on a regular basis about writing the chapter and the deadlines.

Each pair was directly supported by one member of the project team. The project team member would regularly contact the pair with updates about the project and provide reminders about relevant deadlines. They offered information about literature relevant to their chapter, reviewed their chapter and provided feedback.

The project team members also provided technical support to participants such as transcribing stories, organising Skype sessions and calls between pairs and supporting individuals to include images and recordings in their stories.

The word limit for each co-authored chapter was five thousand words, including footnotes and excluding bibliography. For some participants it was a challenge to limit their co-authored chapters to five thousand words while for others the challenge was to reach what was perceived as a five thousand word goal.

Six months after their thematic workshop pairs had to submit a complete first draft for review by the project team and either their mentor or a member of the Advisory Committee or Steering Group. The level of editing required varied from chapter to chapter and in some instances, pairs were offered further reviews from the project team. As a rule, mentors or members of the Advisory Committee or Steering Group were not asked to review later drafts of the text.

A style and citation guide were developed based on the publisher’s guidelines and issued to the pairs after they submitted their first draft.

Final drafts of the chapters were submitted almost a month before the final workshop in the project – known as the book editing workshop. A workshop on citation style for the publication of the chapters was part of the private day at the book editing workshop.

 Anonymity

One of the issues faced when publishing the edited collection was maintaining the anonymity of people mentioned in the chapters, while allowing the authors to use their own names. It was important that authors’ names could be used when publishing their chapters both to take ownership of their own experience and to show the real ways in which denial of legal capacity or being supported to exercise legal capacity impacts on people’s lives.

The storytellers and respondents signed a contributors agreement to consent to the publication of their chapter in the edited collection. They also signed an annex which gave the authors three options which were; that no person or groups were identified throughout their chapter, that they had discussed the chapter with any third parties identifiable from the chapter and that the third parties had consented to the publication or that the authors had decided not to inform third parties that they were identified in the chapter and that the editors were indemnified against any potential repercussions. The contributors agreement and the range of options included in the annex illustrate the values of the project, to respect an individual’s choice and the recognition that everyone is entitled to take risks.

 Withdrawing from the Project

Sixteen pairs were selected to participate in the project, and fourteen pairs provided chapters for the edited collection.

The project’s policy was that a participant could withdraw from the project at any time. It also stated that where a respondent withdrew from the project the project team would try and find another respondent to work with that storyteller. A number of respondents withdrew from the project and were replaced.

However, where a storyteller left the project the project team would not replace the storyteller and any private notes or draft chapters held by the project team in relation to their contribution would be destroyed. Following the withdrawal of a storyteller a respondent who wished to continue to participate in the project was invited to contribute to the project, for example by writing an article for the VOICES website, or volunteering as a supporter at future VOICES events.

Where a participant expressed concern about their partner, the project team communicated with them separately to address this. In some cases, this communication was able to resolve the issue and the participants were able to remain involved the project.

 Accessibility

The language of the project was English, however not everyone in the project spoke English and the project provided independent interpreters to ensure that everyone could participate fully. Some interpreters worked alongside supporters as the interpreters may not understand the specific context of the language or cultural references used.

Not all participants in the VOICES project were able to read and write. In such instances storytellers would usually tell their story or audio record the story and respondents or supporters would transcribe it. After their story was transcribed respondents or supporters would read the story back to them and the storyteller could confirm details or correct any mistakes in the transcription. Some other participants required easy-to-read and plain language materials to ensure that the project was accessible to them.

Participants could bring a support person to workshops. Volunteer supporters were made available by the project team. These volunteers were briefed with regard to the values of the project.

Top Tips

Leave plenty of time for the pairs to work both together and with the project team on the private day of the workshops, particularly in projects where pairs are from different countries or cannot meet in person regularly.   Work out an individual schedule with each pair that meets their specificworking style and access needs, while adhering to the overall project deadlines. This should include agreed times for the project team to check in on their progress.   Support pairs to establish clear boundaries at the outset of their working relationship. This should include agreement on how often they are contactable, how long it might take to respond and how long their meetings might take.   Have an open forum for participants to share their experiences in the closed sessions of workshops. A top tip from one participant was for researchers to have “[c]ontrol of participants speaking time ..this is to ensure that every voice is heard… some may not want to speak and that is OK… [going] around the room is a nice way to be inclusive.”

Lessons Learned

A key piece of feedback from pairs was that the team did not provide enough guidance on  the structure and content of the chapters before the first drafts were submitted. This was intentional to ensure that each chapter developed naturally and did not follow a prescribed template. However, for future projects general tips or a structured session on content at an initial workshop could be provided to ensure pairs had a more concretesense of what was expected of them. One participant advised that it maybe helpful to provide samples for participants in future projects. When developing a project it important to ensure that support for participants is available from the very beginning of the project and that it is provided consistently throughout the project.  One participant noted it was difficult to learn about the laws of another jurisdiction, and that it would have been beneficial to have more time with mentors available.