Participatory research can be methodologically challenging to implement and work with (Gristy, 2015), and when intending to engage adults with intellectual disabilities within participatory research as active participants and co-researchers, additional methodological and ethical tensions arise (Northway, Howarth and Evans, 2015). This particular project explores the experiences of adults with disabilities within an inclusive community outside of formal education, to identify what the core ingredients of an inclusive community are and how policy, education and other provisions can learn from such inclusive community practices. As an unsuspecting product of the research, methodological and ethical components became more significant due to the lack of guidance I could find in the literature about the combination of participation and intellectual disabilities, indicating a significant gap.  

Engaging adults with intellectual disabilities in education research is underdeveloped and limited (Wolbring and Lillywhite, 2021); when people with intellectual disabilities have previously been involved with research, it has been predominately including them as research subjects rather than as active participants or co-researchers. As such, my research with adults with intellectual disabilities within a community setting, intends to push through research on, encompassing notions of research for, but prioritising research with (Nind, 2014).  

Despite the intention of qualitative research being to hear experiences and learn from what is meaningful to participants (Ary et al., 2018), the researcher still tends to be in control of research decisions. Therefore, qualitative research can still play a role in generating hierarchical barriers between the researcher and the researched (Nind, 2008; Nind and Vinha, 2014). There is a need to develop more inclusive research and thinking about participatory methodologies to ensure education researchers are not reproducing researcher dominance and privilege. When conducting participatory work in education, the vast majority of studies work with children, developing methodologies and frameworks to include those perceived as vulnerable. Whilst a valuable movement, with many lessons learnt on how to diversify education research, this is not comparable to the experiences of people with intellectual disabilities and does these individuals a disservice when methodological frameworks are not developed with them in mind. 

The formal ethics process can be inhibiting to the exploratory nature of participatory work, with the need to categorise both research participants and research activities (Northway, Howarth and Evans, 2015; Dierckx et al., 2021). Tensions arose when the ethics procedure asked me to ‘Tick the Box’ if my study involved ‘Adults lacking capacity to consent for themselves’. I felt resistance and shame to be categorising my participants before I could even consult them.  

Since this project is ethically nuanced, the approval process took 7 months, which raised questions about the restrictive nature of procedural ethics if one is exploring underrepresented ideas and topics. It is important to reflect on how many projects, like this, have not make it through this process due to restrictions such as time and funding. It could be argued that the process, that intends to protect participants from harm, is subtly and subconsciously perpetuating inequitable treatment, notions of exclusion and rigidities around value and capability. Such considerations align with Iacono and Murray (2003, p.49), where ethical procedures conflict with the ‘need to protect vulnerable participant groups, while ensuring that demands placed on researchers are not so restrictive as to preclude valuable research’. 

This research paper presentation explores the value, practicalities and complexities of conducting participatory work with adults with disabilities. Whilst the research intends to contribute to inclusion theory, policy and application, as well as methodological and ethical development and applications of participatory work, this specific presentation explores the methodological and ethical findings alongside presenting a ‘how to’ to navigating such processes.

The research involves a three-stage data collection process that include varying levels of participation. The sample is of around 20 adults with intellectual disabilities, who may be involved as participants and/or co-researchers. The first stage, Participatory Diagramming (Alexander et al., 2007), acts as an easing into the project and the concept of researching, since participants have not been involved in research before; early deployment of participatory methods enhance a sense of ownership of the research. Participatory diagramming involves the use of paper, pens and verbal ideas to map out, draw or write participant thoughts, feelings and experiences. Participatory diagramming is a ‘graphic and/or tactile materials to create visual representations that express participants’ ideas and understandings’ (Alexander et al., 2007:112), with Bezzina (2022) using this approach to elicit the lived experiences of people with disabilities. Within the second stage, participants are invited to a researcher-led conversational-style interview, to gain greater insight to their experiences. I am an insider of the community that this research sits within, thus this method builds upon the communication and comfort that has been developed throughout my time with this group. Of course, insider bias and influence are considered (Ross, 2017), with many check-in points to ensure comfort with the research process; my insider lens enables me to use my privileged position as researcher to create space for voices to be heard (Macbeth, 2010). Stage three, the participant-led focus groups, are where most ethical complexities arose. This stage allows participants to develop the research to explore what is specifically important to them, since they are the experts in their own lives. They will conduct a group interview/focus groups with peers and/or support workers and families who are all members of this community. This stage required me to know the unknowns of my exploratory, participatory study. In order to navigate approval of this exploratory aspect, Scenario Planning of the potential design of this data collection method was developed, in order to align with ethical expectations. Additionally, since participants are invited to be researchers, but have not been exposed to ethical dilemmas in the same way that I have, Boundary Setting, Declarations of Confidentiality, Codes of Conduct and Ground Rules were developed to scaffold co-researchers to conducting ethically safe research whilst also protecting themselves from harm. Participants will be asked to reflect on their experience as a co-researcher within this project, which will be presented alongside main project findings.

Outcomes of the research will contribute to theoretical applications of inclusion as well as contributions to the methodological development and application of participatory research for intellectual disability. The findings from the research process will contribute to the development of a participatory researcher’s toolkit, the importance of which is identified by Wilson, Kenny and Dickson-Swift (2017). This is to ensure that important research is conducted, with tangible examples and processes being explored so that future participatory researchers can access guidance. Further, the voice and experiences of adults with intellectual disabilities as co-researchers will be shared, to illustrate the value for such individuals to engage with participatory research. The research will explore how to gain participatory approval, specifically how to develop and to implement Scenario Planning that can be used to articulate the unknowns to an ethics panel and to provide researcher clarity. Alongside this, examples of Boundary Setting, Declarations of Confidentiality, Codes of Conduct and Ground Rules are presented as part of the participatory researcher’s toolkit identified above. Results discuss how to navigate ethical restrictions within formal processes and the importance of working with and through tensions to ensure research does not continue to silence those who traditionally have been (Northway, Howarth and Evans, 2015). The work shares my inclusive researcher resistance to how traditional research and those in the majority contribute towards the continuous labelling and naming of ‘things’ (Hall, 2014). It begins to disrupt the ethical approval process in its current form, where exploratory and participatory work does not fit the structure and presents the exclusionary nature of ‘Ticking the Box’ that categorises those involved before being consulted. The intention is to outline a more inclusive research process for future work as a non-negotiable for research moving forward.

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