*Case Report* **Being an Inclusive Researcher in a National Consultation Exercise—A Case Study**

**Greta Westermann \* , Erin Louise Whittle, Susan Adrian, Suzanne Jessep, Melanie Nolan, Bruce O'Brien, Jasamit Pannu, Elizabeth Young and Mary-Ann O'Donovan**

> Centre for Disability Studies, The University of Sydney, Camperdown, NSW 2050, Australia; erin.whittle@sydney.edu.au (E.L.W.); yunyoo@thc.org.au (S.A.); suziej707@gmail.com (S.J.); melanie\_nolan\_@hotmail.com (M.N.); bruce.obrien.1972@hotmail.nl (B.O.); jasamit@outlook.com (J.P.); elizabeth.young202020@gmail.com (E.Y.); mary-ann.odonovan@sydney.edu.au (M.-A.O.) **\*** Correspondence: greta.westermann@sydney.edu.au

**Abstract:** This paper presents a case study of the Inclusive Research Network (IRN), an inclusive research group founded by the Centre for Disability Studies, contributing to a National Disability Research Agenda (NDRA) setting project. IRN members with ID carried out their own consultations with disability stakeholders. This paper sets out the experiences of the IRN members in facilitating focus groups as part of phase 2 of the NDRA project. As this project took place during the COVID-19 pandemic and state lockdowns, this paper also provides a reflection on new ways of carrying out research and provides an insight into the process for other groups seeking to engage in inclusive research of this nature in a challenging and changing environment. IRN members showed great interest in being involved in the project, and their motivations aligned with the project's objectives. Facilitating the focus groups on Zoom took some preparation and posed accessibility challenges but enabled a more diverse group of people to attend. IRN members with ID improved their online facilitation skills and confidence but concluded that they preferred working face to face. IRN members overcame the challenges presented by online focus groups, and their involvement added value to the NDRA project. Researchers are encouraged to continue practicing inclusive research in times of remote working and virtual interaction and to share their experiences for mutual learning.

**Keywords:** inclusive research; intellectual disability; disability studies; qualitative research; COVID-19; lived experience

**Accessible abstract:** Doing research about people with intellectual disability together with people with intellectual disability is called inclusive research. It is important to do inclusive research, but sometimes, it is difficult to do. It is important that researchers who do inclusive research write about how they did it and explain how they solved problems so other people can learn from them. In this paper, we describe how a group of researchers with intellectual disability reflected on interviews that they did with a group of people as part of a research project. They did this reflection by thinking and talking about the interviews to find out what went well and what did not during the research process. The researchers found that COVID-19 made it harder to do research. The focus groups had to be done online, and this made it harder. Even though there were difficulties, the researchers were good at learning new ways of doing research. Reflecting on this process gave us some new information about how to do inclusive research.

#### **1. Introduction**

Inclusive research has become increasingly recognised as a fundamental part of best practice in conducting research with people with intellectual disability and is a core part of intellectual disability research. Inclusive research was developed out of the emancipatory and participatory paradigms of disability research. These emphasise the rights that people with disability have to be involved in and drive the research about the issues that affect them. They also seek to empower and protect people from marginalised communities

**Citation:** Westermann, Greta, Erin Louise Whittle, Susan Adrian, Suzanne Jessep, Melanie Nolan, Bruce O'Brien, Jasamit Pannu, Elizabeth Young, and Mary-Ann O'Donovan. 2022. Being an Inclusive Researcher in a National Consultation Exercise—A Case Study. *Social Sciences* 11: 164. https:// doi.org/10.3390/socsci11040164

Academic Editors: Patricia O'Brien and Nigel Parton

Received: 20 January 2022 Accepted: 1 April 2022 Published: 6 April 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

(St John et al. 2018; Stone and Priestley 1996; Walmsley and Johnson 2003). While there is an increasing body of literature around the conceptual underpinnings of inclusive research (Bigby et al. 2014a), there is often little practical information on how to conduct this kind of research in collaboration with co-researchers.

Inclusive research with people with disability has been a part of the disability studies discourse for almost three decades. Walmsley (2001) coined the term 'inclusive research' to denote research involving people with intellectual disability as 'more than just subjects or respondents', and it is recognised as best practice to ensure that people with disability are included in research (Bigby et al. 2014a; García Iriarte et al. 2014, 2021; O'Brien et al. 2014; Walmsley 2001; Walmsley et al. 2018). Inclusive research focusing on the lived experience of people with disability can be used to empower and recognise the contributions of people with intellectual disability (Bigby et al. 2014b; Walmsley et al. 2018). It can also be used as a powerful tool for advocacy and to enact social change (Johnson et al. 2014).

The Inclusive Research Network (IRN) is a research group run by the Centre for Disability Studies (CDS), an affiliate research centre of the University of Sydney, Australia. It includes people with and without intellectual disability who develop and work on their own research and participate in other research projects. The group has been active since 2009 and has been involved in a number of research projects over the last 12 years. The members of the group have extensive experience as researchers, and the group has presented the results of their research at national and international conferences and published multiple peer-reviewed articles (Adrian et al. 2013; Riches et al. 2017, 2020). The IRN takes the form of a collaborative working group as described by Bigby et al. (2014b). The group has shared purpose between the academics and co-researchers, and control of the group is dispersed among group members (Bigby et al. 2014b). The group aims to develop new knowledge to improve advocacy and generate social change.

The National Disability Research Agenda (NDRA) was a project funded by the Commonwealth Government of Australia through the National Disability Research Partnership and co-led by the University of Sydney Centre for Disability, Research and Policy and CDS. The aim of the project was to create an agenda that would provide a clear vision to disability research and is based on the knowledge of lived experience. There were three phases to the project: Phase one involved a research mapping exercise to identify existing disability research, research gaps and priorities. Phase two comprised a national survey and consultations with stakeholders carried out by disabled people's organisations, advocacy organisations and project consortium members. Phase two aimed to determine these stakeholders' priorities for disability research. Phase three constituted the synthesis of the findings from previous phases, the refinement of prioritisation and the proposal of areas of research to inform a research agenda (Smith-Merry et al. 2022). Inclusive research is an embedded principle in the Australian disability research agenda, and as such, consultations led by and involving people with disabilities, including people with intellectual disability, were supported.

This paper sets out the experiences of the IRN members in participating in and facilitating focus groups as part of phase 2 of the National Disability Research Agenda project. As this project took place during the COVID-19 pandemic and state lockdowns, this paper also provides a reflection on new ways of carrying out research and provides an insight into the process for other groups seeking to engage in inclusive research of this nature in a challenging and changing environment.

#### **2. Materials and Methods**

The IRN group supported the NDRA in two different ways. Firstly, in April 2021, five IRN members participated in a consultation, facilitated by a CDS research team staff member, to share their own views on disability research priorities. Secondly, in July and August 2021, the IRN carried out their own consultations with disability stakeholders in the form of three focus groups. Prior to that, the IRN met to discuss who IRN members with intellectual disability thought should be invited to the focus groups. Responses included

other people with disability, family members, professionals and politicians. Another meeting was arranged to revise the focus group questions that had been prepared by the NDRA project team in consultation with disability organisations (Smith-Merry et al. 2022). Questions were revised to ensure that they were worded in an accessible way based on the perspective and expertise of the IRN members. Before each focus group session, a short meeting took place to agree who would ask each question.

Focus group participants were recruited via the CDS mailing list and received the National Disability Research Agenda participant information sheet and consent form. Ethical approval for the consultations was received by the University of Sydney.

#### *2.1. NDRA Consultations*

In total, 18 people, including people with disability, family members, carers and service providers participated in the focus groups which were held via Zoom. Each session was facilitated by 4–5 IRN members with intellectual disability and the IRN facilitators (the first and second author of this paper) without intellectual disability. Facilitators without intellectual disability welcomed participants and facilitated introduction rounds of the sessions. Then, IRN members with intellectual disability and IRN facilitators without intellectual disability took turns in asking participants questions from the focus group guide. The 'share screen' function on Zoom was used during the sessions to share the focus group guide. This way, each IRN member could read aloud the questions they had chosen to ask participants.

#### *2.2. Reflection Process*

The findings that are presented in this paper are the result of a reflection process about the NDRA consultations undergone by IRN members with intellectual disability and IRN facilitators without intellectual disability. The reflection process took place during the group's monthly meetings between September and November 2021. The reflection was integrated into the usual meeting agenda and took approximately 30 min in each meeting. At each meeting, approximately 3–5 members were present. The first reflection step was to ensure that the IRN members would be interested in discussing and writing about their experiences. Once that was confirmed, the group agreed questions that each person would reflect on and answer as a way to share the learning from the project experience. This was done by explaining the concept of reflection to the group and then asking members to come up with questions the group could ask themselves to structurally think about and tell other people about the consultation process. The group decided to reflect on their motivations for joining the project as participants and as facilitators, how the focus groups were held and strengths and areas of improvement of the process. Next, the IRN came together again to go through these questions, reflect on the focus group sessions and answer the questions while the IRN facilitators took notes. Afterwards, the IRN facilitators without intellectual disability met to reflect on these questions and on the topics IRN members with intellectual disability had highlighted.

#### *2.3. Process of Writing This Paper*

It was the aim of this paper to include IRN members with intellectual disability in the writing process to ensure involvement in the research process across all stages. However, the aforementioned lockdowns in New South Wales prevented the group from meeting face to face and changed the way we work. Previously, IRN members worked on papers using practical and visual approaches, for example, bus stops (participants rotate between several stations and reflect on questions or provide content to a certain topic while using comments from the previous groups as prompts), working with flip charts and coloured markers to highlight and interlink concepts. Many of these methods did not translate to Zoom or required the use of several additional platforms that would have made participation more challenging and potentially excluded some members. Furthermore, keeping the group focused and engaged was hampered by the online environment. As a response, we decided

to decrease the meeting duration and hold some short, additional meetings as needed. Therefore, fully co-authoring this paper was not possible under the given circumstances. Nevertheless, IRN members with intellectual disability provided reflection which was written up together as a group and represents one part of the paper. IRN members also reviewed and provided feedback on the final draft. The following gives a brief overview of our inclusive writing process: Once the reflections were recorded as notes, the group turned these notes into reflective paragraphs from the perspective of the IRN members with intellectual disability, which are highlighted throughout the text. This was again done on Zoom through a simple shared screen that showed the reflection notes. With an IRN facilitator without intellectual disability as the scribe, these notes were turned into full sentences. The IRN facilitators without intellectual disability further added their own reflections to the paper and discussed the findings. This process resulted in the present paper, with sections of the results written by the IRN members with intellectual disability and all other sections written by the authors without intellectual disability. The finished text was taken back to the IRN members and was revised in summary together. This means that the IRN facilitators without intellectual disability summarised the key points of each section and presented them to the group to ensure that everyone agreed with the final product. This was done as it could not be expected that every member read the paper individually, and reading out the full paper during a meeting while ensuring engagement was deemed as unrealistic.

#### **3. Results**

The following section presents IRN members' and facilitators' reflections about the focus group experience including some learnings made. Reflections cover IRN members' participation in the focus groups, their motivations for being involved in the project as a researcher, the process of facilitating their own focus groups, things that went well and areas of improvement.

#### *3.1. Why Were We Interested in Joining the Focus Group as Participants?*

#### *Perspective of co-researchers with Intellectual Disability*

We wanted to join the focus group because we wanted to find out more information about disability research. We were interested to hear about other people's views, and we wanted to make sure that people hear what we think is important. We also joined to feel included in making decisions.

*Perspective of researchers without Intellectual Disability*

When we asked the IRN members whether they wanted to be involved in the project, they were very motivated. Most of them had been involved in the IRN for years and were familiar with focus group participation, inclusive research and advocacy work. Hearing the IRN members' responses to this question was very encouraging, as their narrative about inclusion in decision making and having a voice reflected the purpose of the NDRA project we were working on. As researchers who feel strongly about the inclusion of people with intellectual disability, it was motivating to hear that the IRN members saw the focus group as an opportunity for exactly that.

#### *3.2. Why Were We Interested in Being the Researchers?*

*Perspective of co-researchers with Intellectual Disability*

We were interested in being the researchers because we wanted to get useful information from other people, especially with lived experience of disability. We were hoping to find out about their stories. We noticed that it was difficult for some people to answer the questions because they did not have a lived experience of disability.

#### *Perspective of researchers without Intellectual Disability*

When preparing for the project and asking the IRN members whether they were interested in co-facilitating, they were never hesitant to commit to being the researchers; in fact, they were very excited about it and suggested who should be invited to the focus groups. They were comfortable asking questions with appropriate support, and it was clear that they have had previous experience in interview and focus group co-facilitation.

Apart from the overall project objectives of inclusion in decision making, IRN members placed emphasis on hearing about other people's experiences. This was also highlighted whenever we reflected on the focus groups experiences in a group meeting, as IRN members recalled participants' stories and said how interesting they had found hearing them. At the same time, as researchers, they placed substantially more weight on stories of lived experience of disability. Taking place during a long COVID-19 lockdown in New South Wales, the organised focus groups also created opportunities for social interaction and storytelling, which was otherwise limited. The social aspect of the groups also became apparent when some focus group participants and IRN members mutually agreed that they would like to stay connected after the project.

#### *3.3. How Did We Do the Focus Groups?*

*Perspective of co-researchers with Intellectual Disability*

We did the focus groups on Zoom. We split up into smaller groups of about 4–5 participants. This made it easier to speak up, and we felt positive about asking questions. We felt that it got easier to ask the questions the more often we had done it. We liked it better to ask questions than being the one answering them. One thing that happened was that participants without intellectual disability sometimes turned the questions on to us. We didn't feel like that was very respectful of our role as researchers.

#### *Perspective of researchers without Intellectual Disability*

We started our preparation a few weeks before the first focus group. At a meeting, we revised the NDRA focus group questions. Prior to that, one of us had already put the questions into an Easy Read format that included photo symbols. At the meeting, the IRN members decided to reduce the amount of questions we should ask. Questions that asked about two concepts, for example, "What are the most important things people can research about disability and the lives of people with disability?" were broken down into two separate questions, as the IRN members said this would be easier to understand. We also included a short definition of research, in Easy English, as an IRN member pointed out that some focus group participants might not know what research is. It was great to see how the IRN members took charge of the questions and were confident enough to point out questions they found—or thought that others could find—hard to understand. Facilitating focus groups during a phase of lockdown in New South Wales meant that we had to conduct them virtually via Zoom. One IRN facilitator without intellectual disability recruited participants via email, coordinated and scheduled the groups. Co-facilitating focus groups with researchers with intellectual disability on Zoom was a completely new experience for the facilitators without intellectual disability. Through previous IRN meetings on Zoom, members were familiar with the medium, but even though they are experienced in focus group facilitation, they had not done this on Zoom before. This meant that the entire group learned together from experience. The IRN members reflected this shared learning when they described how asking questions got easier over time.

The IRN members indicated that they preferred being the researcher to the researched. However, in some cases, they were called on by group participants to answer questions in the focus groups. Most participants indicated that the lived experience of people with disability should be privileged over that of service providers and carers. This meant that sometimes, the IRN members were called on to give their perspectives rather than simply facilitate the group as was intended. It was clear that people were intending to be inclusive, but in some cases, it did not feel as though the IRN members' roles as researchers was being respected. This was a very unexpected observation, as both IRN facilitators have previously held focus groups and never had a similar experience.

#### *3.4. What Went Well?*

#### *Perspective of co-researchers with Intellectual Disability*

We had a mix of people with and without disabilities and people coming from different organisations. It was good to hear different views about what the National Disability Insurace Scheme can do better for people with disabilities.

#### *Perspective of researchers without Intellectual Disability*

Conducting the focus groups via Zoom meant that a wider range of participants were able to attend. It was a useful opportunity to obtain a variety of perspectives on key areas of disability research.

We found that using Zoom made it easier for people to attend from different regions. This way, we were not restricted by distance. People also did not need to make travel or accessibility arrangements as they were attending from their own homes.

#### *3.5. What Did Not Go Well and What Can We Do Better Next Time?*

*Perspective of co-researchers with Intellectual Disability*

It would have been good to meet the participants face to face. This would have made participation easier for some of them. Some things were difficult on Zoom. Next time we do a focus group, we want it to be face to face. We have done other focus groups in the past where we visited people in person. We liked that much better.

#### *Perspective of researchers without Intellectual Disability*

There were a number of issues that arose conducting these focus groups. Some of these were logistical. We encountered a number of difficulties using Zoom. We found that conversation was sometimes stilted via Zoom and it was difficult for conversation to flow, particularly when the researchers needed to read the shared screen.

We also found that there were some accessibility issues with Zoom. We had an ASL interpreter attending one of the groups, but it was difficult to have the screens reflecting focus group participants while still ensuring that the interpreter was appropriately visible. It was also an issue for the facilitators who needed to read the questions from our shared screens. We finally solved this issue by posting the questions in the chat box.

We found that in some cases, the heterogeneous mix of service providers and people with disability meant that the discussions were inaccessible to the IRN members. Some of the service providers used jargon and did not adjust their language appropriately. This may have made it more difficult for the IRN members to facilitate the groups, and may have contributed to a feeling of "speaking over" the IRN members.

As mentioned previously, the IRN members have conducted face to face focus groups. When we reflected on the process of conducting these focus groups, they were clear that they much preferred face to face interactions, and that they were looking forward to going back to that mode of interaction. While they adapted to the online environment and were happy to have learnt new skills, we all agreed that it was overall a more difficult process via Zoom.

#### **4. Discussion**

The purpose of this paper was to describe and critically reflect on our experience, as an Inclusive Research Network of people with and without intellectual disability, of conducting inclusive research for a national research project during the COVID-19 pandemic. We believe that it is crucial to regularly reflect on our practice to ensure that we can improve and grow. Even more so, we find it is key to share our own experiences, critical reflections and resulting learnings with others who want to practice inclusive research. During our own journey of working with the IRN, we have been actively seeking other inclusive researchers' accounts to learn from their successes and mistakes. We found that often, the importance of conducting research inclusively and the resulting benefits are highlighted, and this is crucial to motivate others to work inclusively. However, we found that even though many academics report difficulties, the research process and the challenges connected

with it were only described by a few researchers in detail (Miller and van Heumen 2021; Tuffrey-Wijne et al. 2020). Our hopes are that by being transparent about the challenges that can arise when conducting research inclusively, but describing how we overcame them, showing that our project was still successful, we can take away some of the unknown some researchers might feel who are at the beginning of an inclusive research project.

Reflecting on our work on the NDRA, we found that the IRN members showed a great interest in being involved in the project, and their motivations for doing so aligned with the project's objective of hearing the voices of people with lived experience. The IRN members reported that they enjoyed being the researchers and asking questions and that they preferred this over being the researched. Facilitating the focus groups on Zoom took some preparation and offered some accessibility challenges. On the other hand, it enabled a more diverse group of people to attend, as they were not restricted by distance. Overall, IRN members with intellectual disability enjoyed working on the project and developed their Zoom facilitation skills but concluded that they preferred working face to face.

Throughout the project and during reflection, the IRN members demonstrated how they had internalised the project objectives and recognised it as an opportunity to have their voices heard and influence decision making. It is part of the IRN's vision that people with disability can and should be involved at every stage of research, and it appears that members recognised this project as an opportunity to do so. Even though the project was not initiated by the IRN, they showed interest in the project, took ownership of the research and its objectives and exercised some control over the process. They worked as collaborators with us researchers without intellectual disability. Riches et al. (2017) previously reported how these characteristics of the IRN's work showed consistency with the principles of inclusive research that Walmsley and Johnson (2003) published almost 20 years ago. This paper is an opportunity for the IRN members with intellectual disability to demonstrate the importance of lived experience in inclusive research as well as the research skills they have developed over time.

An observation that made a lasting impression on IRN members and facilitators alike was how participants called on the IRN members with intellectual disability to answer some of the questions. This was only done by focus group participants without intellectual disability and was very unexpected to us, since as researchers without intellectual disability, we had never experienced this before. Given the groups were mixed and there was a tendency for providers to ask questions of the researchers with intellectual disability, in future, it may be better to ensure all participants in a particular group are service providers, or carers, or people with disability rather than mixing the groups. It may also be necessary in the future to reiterate that the IRN members are facilitating in their capacity as researchers. This may highlight an education need among non-researchers/service providers as to the role and potential of people with intellectual disability as researchers. To date, academic accounts focus on inclusive research training for people with disability (Morgan et al. 2015; Nind et al. 2016; Tuffrey-Wijne et al. 2020). Training that teaches researchers and service providers how to work with inclusive researchers is not widely available. One example of such training developed in the Netherlands was reported by Sergeant et al. (2020). Implementing such training more widely could also potentially shift the roles for people with intellectual disability from being the one who is trained to being the expert and trainer.

IRN members advised who should be invited to focus groups and were involved in question revision, focus group facilitation and reporting. Their feedback during question revision facilitated important insights on the level of difficulty and allowed for the modification of the questions to ensure all participants were supported to participate in focus groups. Recognising that the questions needed adjustment and ensuring that they were easy to understand was a 'distinctive contribution which only co-researchers with intellectual disability [could] make' (Walmsley et al. 2018). Walmsley and colleagues identified this 'distinctive contribution' as an important characteristic of inclusive research that adds value to a project. Other characteristics include that the co-researchers' contributions are highlighted and that the work positively impacts on the lives of people with intellectual

disability (Walmsley et al. 2018). In the project described, IRN members with intellectual disabilities' contributions were highlighted throughout the process and in the present paper. Improving the lives of people with disability through creating disability research priorities is the ultimate aim of the NDRA. Thus, it can be inferred that the involvement of the IRN in the NDRA added value to the project.

Drawing on previous focus group experience, IRN members with intellectual disability successfully co-facilitated the focus groups. It must be noted here that IRN members' previous experience with focus groups was in face-to-face environments using tools such as flipcharts and coloured markers to record discussed themes. Working remotely for an extended period of time made it impossible to use these methods and presented a challenge for IRN members with intellectual disability to transfer their experiences. Nevertheless, the group adapted well to the online environment and developed more confidence in Zoom facilitation.

A possible limitation to this project is the potential influence of acquiescence and repetition on responses in individuals with and without intellectual disabilities (Perry and Felce 2004). In the weeks leading up to the focus group, we held several short information sessions about the project and purpose. The repetition of the project agenda could have potentially influenced members' responses and led them to give desirable answers, for example, that they are interested in the project even though they may not be. We made efforts to minimise this risk by regularly asking the IRN members whether they were still interested in the project, explaining to them that there were no right or wrong answers to this question and that answering no would be totally acceptable. We believe it is important to be aware of this potential bias when researching inclusively. Regularly checking in with project team members to ensure that they support the project and its aims is crucial.

#### **5. Conclusions**

In the future, we think it is essential that more researchers report in detail about their inclusive research processes to ensure critical reflection and learning and to encourage other researchers to make their own projects more inclusive. Working inclusively under COVID-19 restrictions can seem daunting and impossible, but we would like to encourage researchers to do it. Despite the challenges, inclusive research can successfully be completed online. Nevertheless, we do not believe that virtual meetings should replace face-to-face interaction past the point of COVID-19 restrictions, as our reflections have shown that the IRN members with intellectual disability value face-to-face meetings. When working with people with intellectual disability as co-facilitators of interviews or focus groups, particularly when the interviewees do not have a lived experience of disability, it might be necessary to clearly define and reiterate the roles of the persons participating in the interview to prevent questions being turned back on co-researchers. Another way of addressing the issue could be that inclusive research groups develop training for researchers and service providers, to teach them about how to work with inclusive researchers.

Together, we learned that even though conducting inclusive focus groups online presented multiple challenges, we still managed to facilitate fruitful discussions that generated valuable insights for the NDRA project. Likewise, even though facilitating focus groups on Zoom was not necessarily something most IRN members liked, they persisted, gained experience, and improved their confidence in the Zoom environment. When working with co-facilitators with intellectual disability, the roles of everyone involved in the focus group need to be clearly defined and might have to be reiterated for focus group participants.

We encourage researchers who practice inclusive research to share details of their research processes, challenges faced and strategies used to overcome them to promote critical reflection and learning and to encourage other researchers to work inclusively.

**Author Contributions:** Conceptualization, G.W., E.L.W., S.A., S.J., M.N., B.O., J.P., E.Y. and M.-A.O.; funding acquisition, M.-A.O.; methodology, G.W., E.L.W. and M.-A.O.; project administration, G.W.; supervision, M.-A.O.; writing—original draft, G.W., E.L.W., S.A., S.J., M.N., B.O., J.P. and E.Y.; writing—review and editing, G.W., E.L.W. and M.-A.O. All authors have read and agreed to the published version of the manuscript.

**Funding:** The NDRA was funded by the National Disability Research Partnership, hosted by the University of Melbourne, and funded by the Department of Social Services through a competitive research process. The funder convened a panel of researchers and consumers to review the authors' applications. The funder is involved in the ongoing project by advertising the project and providing advice on outputs.

**Institutional Review Board Statement:** The study was conducted in accordance with the Declaration of Helsinki, and approved by the Human Research Ethics Committee of The University of Sydney (2021/443 2 July 2021).

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study.

**Data Availability Statement:** Not applicable.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **References**


García Iriarte, Edurne, Patricia O'Brien, and Darren Chadwick. 2014. Involving People with Intellectual Disabilities within Research Teams: Lessons Learned from an Irish Experience. *Journal of Policy and Practice in Intellectual Disabilities* 11: 149–57. [CrossRef]


### *Article* **Reflections on Working Together in an Inclusive Research Team**

**Phillippa Carnemolla \* , Jack Kelly, Catherine Donnelley and Aine Healy**

School of Built Environment, Faculty of Design Architecture and Building, University of Technology, Sydney, NSW 2007, Australia; jacko1995@live.com.au (J.K.); catherine@thirdskindesign.com (C.D.); aine@ideasinfoaction.com (A.H.)

**\*** Correspondence: phillippa.carnemolla@uts.edu.au

**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.

**Keywords:** inclusive research; intellectual disability; university; inclusive employment; collaborative autoethnography; autoethnography; ethnography; disability; inclusion

### **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

**Citation:** Carnemolla, Phillippa, Jack Kelly, Catherine Donnelley, and Aine Healy. 2022. Reflections on Working Together in an Inclusive Research Team. *Social Sciences* 11: 182. https://doi.org/10.3390/ socsci11050182

Academic Editors: Patricia O'Brien and Stephen Webb

Received: 15 January 2022 Accepted: 5 April 2022 Published: 20 April 2022

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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 coresearchers 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:


#### 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:


#### **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 disabilityfocused 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:


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). 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).

3. **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. 3. **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.

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-

2. **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,


*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 8 of 12

home-my-community (accessed on 3 March 2022).

**Figure 1.** Our team came up with five tips to guide the development of more inclusive research teams within university settings. These are all based on what we learnt collaboratively during the research project. **Figure 1.** Our team came up with five tips to guide the development of more inclusive research teams within university settings. These are all based on what we learnt collaboratively during the research project.

#### **4. Discussion 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 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.

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 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 communityled 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):


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.

**Author Contributions:** Conceptualisation, P.C., A.H., C.D. and J.K.; methodology, A.H., J.K., C.D. and P.C.; formal analysis, P.C.; investigation, J.K., C.D. and A.H.; resources, A.H., J.K. and C.D.; writing—original draft preparation, P.C.; writing—review and editing, P.C. and J.K.; visualisation, P.C.; project administration, C.D. and P.C.; funding acquisition, P.C. All authors have read and agreed to the published version of the manuscript.

**Funding:** The research described in this article was financially supported by an Information, Linkages and Capacity Building Grant administered by the National Disability Insurance Agency Australia. The funding source was not involved in the collection, analysis or interpretation of data.

**Data Availability Statement:** Not applicable.

**Acknowledgments:** We would like to acknowledge additional contributors to the project discussed in this manuscript, Megan Taylor and Kiri Weller.

**Conflicts of Interest:** The authors declare no conflict of interest.

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