Reflections on Working Together in an Inclusive Research Team

Abstract

The funding of a research project working with local governments and people with intellectual disabilities led to the establishment of an inclusive research team within a university faculty. The core team consisted of four people, including a design researcher, an architect, a disability advocate and a community researcher/self-advocate. Though there are ample attention and resources devoted to the front-facing parts of a university being visibly inclusive—mostly from a physical access perspective or focussed on the student experience—less attention has been directed to what it means to develop and support inclusive research and aligned work opportunities for people with intellectual disabilities within a university campus. For this reason, the paper explores what it was like for our team that included non-traditional academics and people with intellectual disabilities to work at a university in a design school (not a disability-related research centre). We employ a process of collaborative autoethnography to reflect on how different team members took the lead across different parts of the study. We conclude with a set of tips for the development of more inclusive research teams within university settings.

1. Introduction

Although there has been increasing attention and resources devoted to university life being inclusive of people with intellectual disabilities, this has primarily focused on the student experience and educational program design and delivery (Bumble et al. 2019; Plotner and Marshall 2015). However, universities are places of employment as much as they are places of education. When it comes to the employment of people with intellectual disabilities, universities tend to be acknowledged not as potential employers themselves, but as playing a role in providing pathways to employment of people with intellectual disabilities through education (Wehman et al. 2018; Wilson and Campain 2020). Opportunities for universities to be inclusive workplaces, employing people with intellectual disabilities as staff members, has been explored far less.

Many universities promote themselves as environments for equality and diversity inclusive of gender, ethnicity, social class, sexual orientation, physical ability, identity and cultural background (Buitendijk et al. 2019). Despite this, universities have an ableist track record, particularly as employers of people with disabilities (Mellifont 2021). Brown and Leigh (2018) consider ableism to be endemic in academia. Pointing to the continuing stigma of disabilities for university staff, Brown and Leigh (2018) discuss a discrepancy in rates of disclosure of lived experience of disability between student and staff populations. Brown and Leigh discuss the relatively high disclosure of lived experience of disability in students (11.5% in the UK) but ask the question—“Where are all the academics with disabilities, chronic illness or neurodiversity?” (p. 968).

This paper reports on reflections of an inclusive team that includes people with intellectual disabilities as university employees. Though we do not have a clear indication of the number of people employed with an intellectual disability, there is evidence that people with intellectual disabilities are underemployed in Australia and the UK (Australian Bureau of Statistics 2012; NHS Digital 2021). We can learn about the experiences of people with intellectual disabilities who have held professional roles in research from qualitative and ethnographic research articles published internationally. These are important in documenting the rich and varied experiences of people with intellectual disabilities as researchers (Bonham et al. 2004; Schwartz and Durkin 2020; Walmsley et al. 2018).

The practice of inclusive research with people with intellectual disabilities is an established field of research (Nind 2014; Nind and Vinha 2012, 2014). Literature reviews have reviewed the scope of literature informing the conceptualisation of inclusive research (Bigby et al. 2014), the value of inclusive research (Walmsley et al. 2018), the voice of co-researchers with intellectual disabilities (Strnadová and Walmsley 2018) and more recently, citizenship of people with intellectual disabilities (Chalachanová et al. 2021). There is also an established body of research dedicated to community-based participatory research with people with intellectual disabilities (McDonald and Stack 2016; Nicolaidis et al. 2015; Stack and McDonald 2018). Though not directly focused on people with intellectual disabilities, Nicolaidis et al. (2019) developed a comprehensive set of practice-based guidelines to promote the inclusion of autistic adults as both co-researchers and research participants.

In sharing our experience of working together in an inclusive research team, we hope to contribute to knowledge about how diverse teams work together and complete research within a university setting. We have found, as did Schwartz et al. (2020), that the characteristics of the team members, including our values, have informed the way we have all worked together, who took the lead and when, how we approached any structural barriers and the outputs arising from the research. It is this documenting of what we learnt together, and what we would do differently, that we aim to share in this paper.

Like Schwartz and Durkin (2020), we too note that our project may not be considered ‘best-practice ‘inclusive research, because one of the principles of inclusive research is that it must be driven by the interests of co-researchers with disabilities and owned by them (Johnson and Walmsley 2003). In our case, the research grant and project topic were developed and applied for by the lead researcher prior to the team being assembled. Noting this limitation, we provide our reflection on the structural barriers to inclusive research—notably, that a grant must be awarded, and funds allocated, before a research team can be offered contracts. In our case, there would have been no funds to employ a person with an intellectual disability to work with to prepare the grant application.

In this paper, we employ a method of collaborative autoethnography to describe how a team of four people with both academic and non-academic backgrounds worked together to conduct a qualitative research study. The project was designed around building resources to support the inclusion of people with intellectual disabilities by local governments. Our team also included a core member with an intellectual disability. We reflect not only on what it meant to be a part of this team and project, but how the team experienced the university environment and system.

1.1. About the Team and the Research Project

In 2018, a researcher in the Faculty of Design, Architecture and Building at an Australian university was awarded a grant to undertake an inclusive research project. The project set out to explore ways to support local governments to be more inclusive of people with intellectual disabilities (Carnemolla et al. 2021a, 2021b; Robinson et al. 2022). Any outputs arising from the project were intended to increase the participation of people with intellectual disabilities in their own communities and within the civic structures of their local councils.

Once the funds were secured, we recruited and employed our core project team. Our team comprised four people who have varied experience in disability self-advocacy (lived experience of intellectual disability), disability advocacy, research and design. Our objective was to find ways to inform the local government about what it means to be inclusive of people with intellectual disabilities. The project was funded by the National Disability Insurance Agency (NDIA), and the team were contracted for a period of 18 months.

Important to note, because of its influence on how and when team members were engaged and contributed to the project, is that only one team member, the research lead, had a long-term academic contract with the university. The lead researcher was also responsible for managing the team and was the team member who developed and applied for the grant that funded the project. All other team members were employed on a casual contract and were engaged after the grant was awarded.

The team was assembled after the grant was awarded. Prior to this, the lead researcher had no previous experience employing or managing a diverse team, including people with intellectual disabilities, in a university setting. There was no known precedent of inclusive research within the university’s school or wider faculty; there was consequently no policy or protocols to be guided by and no colleagues to advise the team.

Throughout this paper, we use the initials of team members and co-authors to indicate how contributions were shared across the team. The research lead (PC) started to build the team, first recruiting CD, who had experience in inclusive practice and research into ‘co-envisioning’. Following this, AH was contracted as a team member because of their experience as an advocate for people with intellectual disabilities. These experiences meant that AH provided valuable guidance on how to recruit a research associate with a lived experience of intellectual disability onto the team. AH’s networks with other community and advocacy organisations meant that recruitment of a person with intellectual disability could be sent out to established networks relatively quickly. JK, who had experience as a self-advocate and community researcher, was approached as a potential candidate, and following a telephone call and face-to face-meeting, JK decided they would like to take the job as a research associate. Team member AH also had extensive experience working with people with intellectual disabilities, and on this project they worked closely with JK to plan for all support requirements related to working with both the team and other participants with intellectual disabilities. The team leader worked with all team members to determine individual preferences around personal support workers on campus and were open to having any preferred support person present with the team during workdays. The team themselves had existing skills in inclusive communications, both in writing and in generating Easy Read materials. This made the team communications able to be managed within the team and not externally sourced. AH provided clear guidance for the project leader around planning, scheduling and communication materials for the project and how best to manage work tasks set for all team members with lived experience throughout the duration of the project. PC and AH worked closely with each team member to set and plan workloads that suited individual skillsets, communication preferences and expectations.

This paper covers a period of one year of the project, when the team members worked together on-campus in an open-plan shared office. We all worked a range of hours per week on the project but were on-campus together fortnightly (for the first 4 months), then weekly. After morning team meetings, we would break into smaller groups, depending on whom was working on what research activity. We all worked together to complete a range of research activities for the project:

• Conduct focus groups with people with intellectual disabilities
• Conduct interviews with local government representatives
• Co-facilitate workshops with the local government
• Analyse and synthesise results from the focus groups and interviews
• Plan each next stage of the project and negotiate contributions

Inclusive Analysis of Data

We worked to ensure that all team members had the opportunity to contribute to each of the research activities. All but one of our focus groups and interviews were co-facilitated with a team member with an intellectual disability.

We also analysed and synthesised our focus group data together. We did this by firstly getting all recordings transcribed. In one of our regular team meetings, we discussed what we thought some of the themes might be, based on the experiences we had as co-facilitators of focus groups and interviews. We also discussed ways the team could come together to agree on the themes emerging from the recordings.

Team members PC and CD first began a round of initial coding of the data, generating a collection of key quotes and generating a list of possible themes. The team spent a morning together with these quotes written onto pieces of A3 paper. We discussed them and clustered them into themes. We then co-facilitated an analysis workshop that included our team as well as self-advocates with lived experience of intellectual disabilities from a local disability advocacy organisation. During this workshop, co-facilitated by our team member with intellectual disability, we used the walls of our meeting room to post a selection of quotes, written on large pieces of paper, on the wall. We all discussed each quote, and each participant in the analysis workshop helped us to categorise and prioritise the quotes within themes. The quotes were placed around the rooms into different categories, reflecting on what they meant for each of the workshop attendees. This was how we came up with the themed recommendations as findings from the research project that the team were working on together.

2. Materials and Methods

A number of papers have documented or reflected on their inclusive research approaches, processes using autoethnographic writing (Milner and Frawley 2019; Schwartz et al. 2020; Schwartz and Durkin 2020). Other autoethnographic research has explored the experiences of people with intellectual disabilities as students at university (High and Robinson 2021; Vroman 2019). The experiences of individual researchers with intellectual disabilities has been documented as auto-ethnographic research by White and Morgan (2012), and the process of building inclusive teams has been explored by Strnadová et al. (2014).

This paper uses the qualitative method of collaborative autoethnography, as described by Chang et al. (2016), to explore the experiences of an inclusive research team, including team members with intellectual disabilities, at an Australian university. We reflect as a group on how we worked together and how our team operated within the existing systems and structures of a university faculty. In this paper, we employ Chang et al.’s approach to the collaborative autoethnography of pooling stories, finding commonalities and differences and finding meanings in relation to sociocultural contexts (Chang et al. 2016).

We want to discuss what it means to have diversity of staff as well as students on campus. The reflections in this paper were captured in November 2019 as a series of group discussions and interviews between team members who had worked together for a year. The group discussions were intended to explore individual perspectives of working together and centred around the themes of inclusion, intellectual disability and universities as workplaces. The team also discussed their experiences as a collective, together, as a small inclusive research team operating within a larger university faculty.

Team members framed a list of open questions designed to explore each person’s perspectives, what they learnt and what they would do differently next time, in a diverse team setting at a university. Notes were taken at each discussion, and the questions asked included:

• What has it been like for non-academics on the team to work at a university?
• What have we learnt working together?
• What has worked well?
• What would you do differently?

3. Results

The team reflected on their experiences, what it meant to be working at a university and what knowledge they take with them beyond this project. We share what has worked, what hasn’t worked, and what it is like to be a diverse team, including researchers with intellectual disabilities, within a large organisation.

We organised our reflections into themes. Following our reflections and sharing of stories, we share what we have learnt together as a list of five tips—because we hope that hearing our project experience will encourage other universities to build diversity within research teams and include people with intellectual disabilities. The tips are intended to encourage discussion about inclusive research approaches in universities and their organisations and answer some of the difficult questions about what inclusion really is, what limits inclusion and how to address this.

3.1. Reflections on What Worked Well

What initially was thought to be a limitation of the project—that it was being conducted in a university setting with no experience of inclusive research, and with no experience of including people with intellectual disabilities as staff members—became one of the project’s strengths.

JK: We are all from different backgrounds—not necessarily disability—and we all bring something special to the team.

Each team member valued the structure and location of our team’s project in different ways. For example, some of our team valued that the project was not located in a disability-focused centre or faculty; rather, it was an experience of university life without the label of disability:

JK: This office isn’t focused on disability-related work and have a different take on it. What I mean is, this office doesn’t have the word ‘disability’ in it

For the project’s lead researcher, the lack of precedent of inclusive research was at first thought to be a potential difficulty when considering interactions with university operational, professional and academic staff. However, this perceived difficulty became an opportunity:

PC: Because our faculty and school had not undertaken any inclusive research before, there were no rules to guide us—this worried me at first. But then, we realised that we could do our best work, and no one was limiting our scope on what was inclusive or how to do it—instead we looked to the lived experience within the team, of self-advocacy and advocacy, to guide us. It worked well because we built our own rules and ways of working together.

PC: We had very supporting professional staff, who worked with us to ensure that the needs of everyone in the team were met—this might include accessing assistive technology, supporting with administration activities, accessing the building, finding spaces for us to work together.

All of team members, regardless of lived experience, found working in a diverse team a rewarding and valuable experience:

JK: We are a dream team; I think when you are building a research team you have to have people who are on the same page with ideas and with the same outcome in mind.

For the research lead, what also worked well was having everyone together on the same day each week:

PC: We could plan for regular meetings, and everyone could be kept up to date on the project’s progress and activities. I knew that Thursday was our project day. For me, I really appreciated everyone being together, and sharing the decision making on a regular basis. I would not have liked to be working remotely or managing the team individually—we really were together, working together.

Additionally, what also worked well was that we all respected that each individual team member had preferred ways of working and communicating with each other. We adjusted our communication accordingly. For example, we worked out that some team members preferred to have conversations about things rather than read through a document, so we planned discussions to work through decisions rather than requiring reading of materials. We also worked out how much information we could discuss in a staff meeting and what information was too much. Together, we worked out that having regular breaks was important to keep everyone focused and rested. We also worked out that working between 9 am–1 pm was the best use of everyone’s time on a Thursday. If people wanted to work longer, they could, but 9am–1 pm was our team time.

JK: I have a lot of flexibility; I can have a break anytime I want.

JK: This was the first team where my manager totally understood the way that I like to operate; it took other employers a long time to adjust to the working style that I have.

Time management was very important for the research lead, and one of the skills learnt was that when working in a team with diverse support, mobility and communication preferences, planning activities well in advance meant that support workers could be scheduled, and transport planned.

PC: We established an understanding and respect for each other’s time availability and the time taken to plan for attendance and performance of key activities e.g., co-facilitating focus groups at various local government locations. It takes time to make sure that support staff are available, to organise transport and check accessibility of venues. For people with disability who rely on support staff and accessible transport to meet their job requirements, allowing for this forward planning is very important.

3.2. What Was Difficult—What We Would Do Differently

One of the continuing barriers we experienced as a team was the expectation for us all to engage with the university’s inaccessible systems online. These included pay claim systems that didn’t work with screen-readers or voice-to-text technology. Although professional staff were extremely helpful in finding workarounds, such as hand processing pay claim forms, this was ultimately not sustainable and meant that support staff would complete this task on behalf of team members who relied upon voice to text.

Another example of the inaccessibility of the university systems was the compulsory online training courses that all staff were expected to complete. These courses were delivered on an online platform that was inaccessible for people who use voice-to-text technology. In addition to this, the content included complex and overlapping concepts, meaning that it took additional time to complete for team members who preferred to work with Easy English and Plain Language communication.

3.3. Barriers to Doing Best Practice Inclusive Research

We often talked together about the fact that our project was not diverse or inclusive until 3 months after the project started, after the grant was awarded and the project aims defined. Our reflection on this is that the way university research is funded, via non-recurrent project grants, presents a significant barrier to more inclusive research. Relying on non-recurrent project funds to undertake inclusive research means that research associates can only be employed after the grant has been won. This limits the ability to perform community-led research and restricts grant writing to academics employed on long-term fixed contracts or permanent positions, as their time is paid for at the time of the grant writing.

The team reflected on the dynamics of the team and how the team was built.

PC: One thing I would do differently, as the manager of the inclusive team and project, and I would feel more confident about it now, is that I would employ more people with lived experience of intellectual disability on the core team. …in the intensive focus group and feedback parts of the research, such as when we are doing roundtables—I feel that expecting one person to represent diversity on the project, to come in part time, and to be present to co facilitate, co-interview, co-chair in those busy times. …puts pressure on that team member because of the value and importance of their lived experience.

3.4. Perspectives on the Label of Intellectual Disability

We talked about some of the things we learnt by having worked in a diverse team at a university, about working together with JK and conducting focus groups with people with intellectual disabilities:

CD: The most striking thing for me working for the first time with people with intellectual disability has been the overwhelming discomfort with the label and facing the prejudice that is embedded […] in this. JK’s contributions to the work are insightful and very often profound. JK articulates the essence of things succinctly and keeps the project’s integrity, values on track with clear and kind redirection where we need it.

CD: I have personally really struggled with the appropriateness of the label “intellectual disability” when I believe the contribution of JK as a core team researcher and the focus group participants is in fact the critical work. The rest need to adjust, learn and be humbled to these ways of seeing and being in the world.

PC: We did our best to make the project and our teamwork a success. Sometimes things got in the way—like a structure or a system. For example, budget limitations meant we had to do things differently, not employ as many people, but we recognised that part of the learning process is accepting that our inclusive research might not be perfect first time, and that we can improve and build upon the process we have learnt along the way.

3.5. Reflections on Access and Inclusion in the Workplace

The team discussed what we learnt about how access and inclusion are framed in the workplace, in the physical built environment, communication approaches and in social settings.

CD: The second thing I have learnt is the concept of accessibility extending well beyond the physical. This highlights the need for designers in the built environment to be far more educated.

AH: We found out early on that the campus wasn’t accessible in some ways. The fire stairs couldn’t house more than one person using a wheelchair.

JK: The online payroll system can be confusing and does not work with voice-to-text. I needed to have help to fill it in. We have got used to it now though.

3.6. Inclusive Research Is Doable—Here Are Our Top Tips

As a team, we felt it was important to come up with our set of top tips to share with other researchers who are considering undertaking more inclusive research at a university. We developed these tips to demonstrate that inclusive research is doable and can be accomplished well in different ways. Our top tips are listed below and included as an illustrated graphic in Figure 1:

• Employ people with the lived experience of disability as members of the core research team. We regard this as one of the most valuable and critical features of the success of our project. We all worked together, bringing together a range of skills—each team member had the opportunity to take the lead and share their skills and knowledge about inclusive research. The project we worked on can be found here: https://www.uts.edu.au/node/284291/what-we-do-old/research/my-home-my-community (accessed on 3 March 2022).
• Do what it takes to make it happen—be flexible, listen and be responsive. Build expertise and experience into the team—this includes the lived experience of people with an intellectual disability, as well as experienced advocacy and support experts, to ensure that peer skill building takes place. Work out early on how people prefer to work and communicate and adjust the team environment and processes to suit everyone. Partner with community organisations to bring additional inclusive research knowledge and expertise (we were grateful to be able to partner with the Council for Intellectual Disability (CID) for some parts of our project).
• Recognise that inclusive teams can work in all learning and research spaces—not just disability-specific ones. There are many opportunities to utilise the benefits and increased impact of community-led, diverse teams across the university campus.
• Accept that it’s going to look different for different teams. Everyone has different ways they like to work and different skills to contribute, and personalities work differently together. Not only this, but every project will have different priorities and outcomes.
• Be open to not knowing ”stuff” and/or not being in control. It is okay to not be an expert in inclusive research straight away. Listening and surrounding oneself with experienced people (both self-advocates and advocates) is a great way to navigate what inclusive research can be.

4. Discussion

Our work together raised several questions about inclusion, research and the experiences of people with intellectual disabilities who have a job at a university. We decided to focus this paper on how we experienced teamwork in a university setting, the physical environments, structures and systems, to highlight how inclusive research has been undertaken. We have reflected on how existing university systems and processes either helped or hindered working together, and how different team members took the lead across different parts of the study.

What is clear from our reflections is that our different backgrounds worked very well together. For most of the team, this was their first experience of working in an inclusive research team, including the team leader. Effective management of the team and the project meant listening to the experiences and guidance of other members, including team members with a lived experience of intellectual disability. One of the unexpected strengths perceived by the team, and emerging from the reflective discussions, was that we were not part of a disability-specific centre.

The project was undertaken in the Faculty of Design, Architecture and Building and the School of Built Environment. The administrative, professional and supervisory staff around us had no prior experience being part of an inclusive research team. This lack of disability-related experience was initially seen as a disadvantage for the team, who were working without much guidance or precedent. However, interestingly, as the project progressed, not being a “disability” research centre was highly valued by team members, especially members of the team who had a lived experience of intellectual disability. The freedom given to the team by the university was valued by the team leader. This freedom was possibly the result of a lack of established ideas and policies around what inclusive research should be and meant the team could decide what worked for them.

Together we identified some barriers that influenced how we worked together as an inclusive research team, as well as the potential to work on other inclusive research activities as funded projects. We learnt that the way research is typically funded in universities (as non-recurrent funds form competitive grants) can be a barrier to community-led research, and best-practice inclusive research (as described by Johnson and Walmsley 2003). Unfortunately, this indicates that community-led research projects, where communities themselves prioritise and decide upon what research is important for their community, will be less likely to take place in university sectors in the current research funding setting. It is only the academic with long-term employment at a university who can be paid to develop and apply for a grant, and who designs the project—up until the team is put together—and communities cannot be expected to give their time without being properly recompensed. Given the relatively privileged and ableist representation of university academics, a person with long-term academic employment is unlikely to be a person with an intellectual disability. The reality is that funds are unlikely to be able to be found to pay a person with an intellectual disability prior to a grant being awarded.

The Carnegie Community Engagement Classification is a global network of universities (in the US, Ireland, Canada and Australia) that has been established to evaluate and recognise best practices in community engagement by universities (Driscoll 2008). The Carnegie Foundation recognises the role that universities can play in embodying diversity and inclusion and encouraging community participation. The very existence of the Carnegie Foundation speaks to an opportunity for universities to expand practices that offer practical pathways to diversity and inclusion of researchers, and of research practices, as well as students. There is also an opportunity to identify structures, such as the project-limited funding structure described previously, that act as barriers to community-led research. Though there is a long, established and important history of inclusive research being conducted in universities, this has tended to be restricted to disability-focused institutes and centres. The next level to best practice will be the incorporation of inclusive practices and community-led projects being actively pursued and delivered across the full scope of university research being undertaken. This requires us to ask the question of how universities value community partnerships in relation to research teams, and will require deeper articulation and scrutiny of the questions asked by Grant and Ramcharan (2009, p. 32):

• “What kinds of knowledge are directly attributable to inclusive research (intellectual capital)?
• How these knowledge claims can be assessed and authenticated (methodological capital)
• The benefits of the experience to individual service user researchers (individual capital)
• In relation to project teams, what forms of partnership (managerial and social capital) make inclusive research effective and whether good science and inclusive research can be integrated.”

We also experienced some barriers in the built environment and online university systems. Although the immediate workplace was made accessible with appropriate assistive equipment (including voice-to-text software on computers), the team was frustrated by the inaccessibility of internal online systems and was confronted with how this limited the autonomy and agency of staff who use, and rely upon, screen readers or voice-to-text technologies. For example, the recruitment process itself was extremely cumbersome and digitally inaccessible, requiring professional staff to sit with the new staff member in person and work through the recruitment process. The system inaccessibility extended to many of the internal financial systems, making pay claims and expense claims something that team members who used screen readers could not accomplish independently, which is problematic if this means having to divulge passwords and logins.

These barriers prompted a lot of discussion within the team about what inclusion really is, how universities could do better and what role we could play as a small inclusive research team. We often discussed what our responsibilities were to support changes to structural inaccessibility. The team manager, as the only long-term employed researcher on the team, felt strongly that part of their role and responsibility as the project lead was to represent the importance and possibilities of more inclusive practices. This was accomplished by being transparent and demonstrative about how successfully the team were working together, and by vocalising what processes were inaccessible and why change was important. When we had the opportunity to engage with any university department or network (e.g., marketing, finance, research support and media) about our experiences, we did so with transparency about why our project was significant, how we made it work and what parts of the systems at the university made doing so unnecessarily difficult.

There were also considerations to be made around the practicality of managing a project with a team of traditional and non-traditional academics, where most of the team were employed on a part-time and time-limited basis. Given the diversity of experience as well as communication and work preferences across the team, what worked well was dedicating a day per week on which we all worked together on campus. We hosted inclusive team meetings and planned upcoming research activities on this day. We learnt that long-term calendar planning in an inclusive team is important, and it is the only way to ensure that team members and those who receive personal care support could be expected to plan transport, attend meetings and focus groups and co-facilitate planned activities. We revealed that some research and project activities do have to be broken down into smaller parts, with regular breaks built in.

The list of top tips to guide the development of more inclusive research teams within university settings arose out of our reflections and discussions together. We asked ourselves what we thought would be useful to share with other researchers who might be considering inclusive research or were unsure how to approach employing people with intellectual disabilities as researchers at a university. The tips are informally worded and are intended to get people comfortable with the idea of taking small steps, iteratively learning and not feeling pressured to get everything perfect, especially the first time around.

5. Conclusions

This paper is intended to encourage discussion about inclusive research approached in universities and other organisations. Here, we reflect on our experience as a team and share what worked and what was difficult. We had the opportunity to work together on a project that was designed to support the inclusion of people with intellectual disabilities, and it meant that we got to think about some difficult questions about what inclusion really is, and what it is not, what limits inclusion and how we set about as a small team with lived experience of intellectual disability to address this.

As we expand our understanding of community-led research, and inclusive research across universities in general, it is important to consider that the application of the principles of inclusive research explored in this paper are not limited to people with intellectual disabilities. Rather, the concept of inclusive research can be expanded to include any community group, in particular communities who have historically been excluded from research conversations and decisions despite being the subjects of research. Developing more inclusive university systems, processes, software and communications can lead to universities being more inclusive of researchers from a wide range of marginalised communities, e.g., older people, people who have experience mental health conditions, or culturally and linguistically diverse communities.

We hope that our project experience will inform and encourage other organisations to build diversity within research teams and to include and employ people with intellectual disabilities.