To begin the VOICES project, ethical approval had to be received from the National University of Ireland, Galway and the European Research Council. Other projects similarly structured in this format may need to follow other processes for ethical approval of their project which will vary depending on the country or host organisation.
The VOICES project was committed to the recognition of universal legal capacity, as per Article 12 of the CRPD. Article 12 sets out the right to legal capacity for persons with disabilities on an equal basis with others. The project’s primary concern was ensuring that all participants gave meaningful consent to participate in this project and that support for exercising legal capacity was available throughout the project.
To ensure that meaningful consent to participate was obtained, participants were asked to consent throughout a number of stages of the project and consent was given by:
- Completing application forms and agreeing to the project values and ground rules
- Affirming commitment to the ground rules at each workshop
- Signing the contributors agreement to publication in the edited collection
The project team did ask participants to sign various documents where necessary throughout the project, however the team recognised that participants may have had negative experiences as a result of signing consent forms in the past or may have varying levels of literacy. The project also identified that signing consent forms alone does not always amount to meaningful consent. Therefore, the project team endeavoured to ensure that all participants were providing meaningful consent to participate throughout the project by discussing the project with participants and obtaining oral consent.
Oral consent was also obtained to publish the videos of the presentation of stories and responses online. Participants were informed that the presentations from the public day of the VOICES project would be recorded and placed on the VOICES project website. Participants were asked during the practice presentations the day before at the closed workshops if they consented to their presentations being recorded and published online.
One of the major initial challenges for the project regarding compliance with the standards of the relevant ethics committees was that the researchers were asked to obtain consent from the guardians of any participant subject to plenary or partial guardianship. This process would not have been compatible with the inherent principles of the VOICES project regarding recognition of legal capacity of people with disabilities. It also fails to appreciate that the participants in the project were not subjects of research but rather researchers and authors who had chosen to participate in the creation of the research output.
The Principal Investigator obtained ethics approval without committing to seek consent of guardians for participants in the project, as she demonstrated that all participants would have to satisfy the project team that they were participating based on their personal free and informed consent. Moreover, obtaining such consent was not mandated by legislation in the jurisdiction where the project was based. Fortunately, this issue did not apply to the project in practice as no participant had a guardian in place during the course of the project.
The ground rules were established to minimise the risk of discomfort or distress for participants sharing their stories and experiences and were circulated to all potential participants along with the application forms during the recruitment process. A large easy-to-read copy of the ground rules was placed on the wall at the first workshop and participants were given the opportunity to discuss the ground rules. The participants collectively decided to include new rules and change some of the existing wording and these changes were written and placed on the wall alongside the existing rules. All of the participants then agreed to the set of ground rules to participate in the VOICES project and signed their name on sheets of paper around the rules displayed on the wall by way of consent.
The ground rules asked that participants only shared their own stories and experiences during workshop sessions and public presentations, and that they did not describe anyone else’s experience. They reminded participants that they did not have to share any information they did not want to.
Participants were required to listen and respect each other’s voices and stories, and not to be dismissive of anyone else’s experience. To ensure that everyone’s voice was heard the ground rules also identified steps that should be taken in workshops where an individual dominated the conversation, or it became polarised.
The ground rules stated that stories shared in the closed workshops must remain confidential unless a participant gave express permission for other participants to share their story.
The project team was aware that some storytellers and respondents could become distressed during the project due to the nature of the experiences being discussed. To address this a distressed participants’ protocol was created at the outset. This set out the steps that would be taken by the project team if a participant became distressed during a workshop.
A quiet room was made available to storytellers and respondents throughout all of the VOICES workshops and events. At any time during the project when a participant left a workshop early or was upset, a member of the project team contacted the participant. The project team also held debriefings at the end of every workshop session to discuss whether any participant was upset, and to ensure that the rest of the team was aware of and could support the individual if they were upset the following day.
As well as the debriefs at the end of every workshop session , the project team also had a policy that teams members could come to each other with any problem arose during the project generally. Team members would check in with one another and could discuss the issue at informal meetings.
For storytellers and respondents working together, one participant advised that in future projects, based on the positive experience of collaboration in VOICES “partnerships [should] invest most time at the beginning and devise their own strategies to manage distress because storytelling should not hurt.”