Special Issue "Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition"

Dear Colleagues,

In 2023, Social Sciences published a Special Issue, entitled Inclusive research: is the road more or less well travelled? (O’Brien, 2023). The issue consisted of 19 articles that enabled the reader to reflect on how far inclusive research had permeated the research scene. The issue attracted inclusive researchers globally, emphasising that inclusive research had succeeded in challenging the practice of people with intellectual disabilities being “the researched” rather than “being and becoming researchers” (Garratt et al., 2022).  

Counting each of the 19 articles as a milestone along the road of inclusive research, they were both celebratory and challenging in nature. Celebrated throughout the Special Issue was that being and becoming an inclusive researcher had increased the confidence of people with the lived experience of disability in defining who they were, supported them to affirm themselves through participating  as a solo author, with a partner or as part of an inclusive research team (High and Robinson, 2021; Herer and Schwartz, 2022; Crombie Angus and Angus, 2022). Telling their own stories inspired their peers to join them. Stopping along the road to hear what made or could make for good working inclusive relationships often flipped the celebration into a challenge. To achieve diversity-sensitive work, the inclusive research voice suggested players should experience belonging, competency building, self-awareness and sharing power through the gift of much needed time and mutual engagement

(Sergeant et al. 2022). The voice for inclusive researchers with the lived experiences of intellectual disability needed to be one that exercised control, discussed selected research strategies and engaged in dialogue on ongoing issues with all project stakeholders (Zaagsma et al. 2022). 

The documenting of research strategies also played a part in the Special Issue. Emphasis was placed on the need for teaming (Bonello et al. 2022). Members needed to debrief regularly.  

(Westermann et al. 2022) and recognise that inclusive teams can work in all learning and research spaces not, just disability-specific ones (Carnemolla et al. 2022).

All data collection analysis strategies were aimed to be accessible through using a range of approaches, for example, objects, image theatre and body mapping (Rojas-Pernia et al. 2022).  The importance of building relationships between all members of the research team was stressed. The relational side of inclusive research was evidenced throughout the pandemic, indicating how conducting inclusive research could detract from social isolation (Puyalto et al. 2022).  

Within this Special Issue, the boundaries of research methodology that aligned with the principles of inclusive research (Walmsley and Johnson, 2003) were pushed. The role that persons with profound intellectual disabilities can play in research was verified (de Hass et al, 2022), as was that of developing a Community of Development (COD) versus that of a Community of Practice (COP) (Knevel et al. 2022). Further, other disciplines not known for their work in inclusive research, such as the criminal justice system (Doyle et al. 2022) and health rehabilitation (Layton et al. 2022), identified that there were people with the experience under investigation missing from their research teams. Well represented, nevertheless, were advocate researchers who left the reader with a manifesto on how to conduct inclusive research, strongly arguing the need for equal relationships with academic researchers, increased government funding, the development of career paths for inclusive researchers setting up national advocacy and research bodies and an academic community that accommodates the need for accessible language (Hopkins et al. 2022). Both the first (Garratt et al. 2022) and final articles (O’Brien et al. 2022) in the Special Issue looked forward through looking back, recognising the interplay between the past and the present in sustaining the gains made within the paradigm of inclusive research. Challenges are made to all involved in inclusive research, including that people with intellectual disabilities should become more involved in the development of proposals, accompanied by policy makers partnering with people to evaluate policy outcomes. Such partnerships could be instrumental in the commissioning of research to bridge the gaps between aspiration of quality lives and life outcomes.

Within the context of the MDPI Special Issue on inclusive research, the paradigm is now a road more well-travelled by people with intellectual disabilities, different from earlier roads where they experienced research “being done to them” rather than “the doing of it”. A second Special Issue will now build on the evidence gained, continuing to capture what are the important research questions, methodologies and outcomes relevant to the lives of people with the lived experience of disabilities. 

The first edition of this Special Issue leaned on Robert Frost's poem where, in 1916, he wrote, 

         Two roads diverged in a wood, and I
         I took the one less travelled by,
         and that has made all the difference. 

As making a difference  can sometimes be short lived, the second edition will continue to explore what difference inclusive research can make. The first edition demonstrated that the road is open to those researchers who wish to travel inclusively, with the second edition opening a further opportunity to illustrate the sustainability of inclusive research. Moving now from the inspiration of Robert Frost to that of Walt Whitman, the new Issue is simply entitled, Inclusive research: An open road? Whitman’s words are extracted from  his poem, The song of the open road, where choice drives the journey.

         Afoot and light-hearted I take to the open road,

         Healthy, free, the world before me,

         The long brown path before me

             leading wherever I choose.

         Walt Whitman, 1855

Articles are welcomed across a range of topics, including, but not limited to, those listed below. Feel free to add topics of your interest that evidence the successes and challenges of  “being on the open road”.

Some suggested topics

• Personal stories of choosing where the open road of inclusive research can lead.
• Outcomes of teaming as inclusive researchers.
• Challenges and unmet needs of being together on the more well-travelled road of inclusive
• Breakthroughs in tackling challenges of conducting research inclusively.
• Breaking down barriers to include researchers with alternative forms of communication.

Hearing the voice of inclusive researchers in bridging the gaps of: being paid

• developing a research career
• being appointed as a member of a research funding group
• working in partnership with policy makers.
• Offering training within the disability and aligned sectors on the where, what and how of inclusive research.
• On being heard as advocate researchers
• The changing and evolving principles and practice of inclusive research arising from being seen and heard on the open road.

References

1. Bonello, Isabel, Sandra Borg, Anne-Marie Callus, and Cristina Grech. 2022. Reflections on the Implementation of an Ongoing Inclusive Research Project. Social Sciences 11: 234. [Google Scholar] [CrossRef]
2. Carnemolla, Phillippa, Jack Kelly, Catherine Donnelley, and Aine Healy. 2022. Reflections on Working Together in an Inclusive Research Team. Social Sciences 11: 182. [Google Scholar] [CrossRef]
3. Crombie Angus, Fionn, and Jonathan Angus. 2022. Exploring My Life Path by Asking 600 People What They Love about Theirs. Social Sciences 11: 551. [Google Scholar] [CrossRef]
4. de Haas, Catherine, Joanna Grace, Joanna Hope, and Melanie Nind. 2022. Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities. Social Sciences 11: 159. [Google Scholar] [CrossRef]
5. Doyle, Caroline, Sophie Yates, and Jen Hargrave. 2022. Reflecting on the Value of Community Researchers in Criminal Justice Research Projects. Social Sciences 11: 166. [Google Scholar] [CrossRef]
6. Garratt, Danielle, Kelley Johnson, Amanda Millear, Shaun Picken, Janice Slattery, and Jan Walmsley. 2022. Celebrating Thirty Years of Inclusive Research. Social Sciences 11: 385. [Google Scholar] [CrossRef]
7. Herer, Alix, and Ariel E. Schwartz. 2022. How Being a Researcher Impacted My Life. Social Sciences 11: 127. [Google Scholar] [CrossRef]
8. High, Rachel, and Sally Robinson. 2021. Graduating University as a Woman with Down Syndrome: Reflecting on My Education. Social Sciences10: 444. [Google Scholar] [CrossRef]
9. Hopkins, Robert, Gerard Minogue, Joseph McGrath, Lisa Jayne Acheson, Pauline Concepta Skehan, Orla Marie McMahon, and Brian Hogan. 2022. “Digging Deeper” Advocate Researchers’ Views on Advocacy and Inclusive Research. Social Sciences 11: 506. [Google Scholar] [CrossRef]
10. Knevel, Jeroen, Jean Pierre Wilken, and Alice Schippers. 2022. Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities. Social Sciences 11: 121. [Google Scholar] [CrossRef]
11. Layton, Natasha, Em Bould, Ricky Buchanan, Jonathon Bredin, and Libby Callaway. 2022. Inclusive Research in Health, Rehabilitation and Assistive Technology: Beyond the Binary of the ‘Researcher’ and the ‘Researched’. Social Sciences 11: 233. [Google Scholar] [CrossRef]
12. O’Brien, Patricia, Edurne Garcia Iriarte, Roy Mc Conkey, Sarah Butler, and Bruce O’Brien. 2022. Inclusive Research and Intellectual Disabilities: Moving Forward on a Road Less Well-Travelled. Social Sciences 11: 483. [Google Scholar] [CrossRef]
13. Puyaltó, Carolina, Maialen Beltran, Tània Coll, Gemma Diaz-Garolera, Marta Figueras, Judit Fullana, Cristina González, Maria Pallisera, Joan Pujolar, and Ana Rey. 2022. Relationships of People with Intellectual Disabilities in Times of Pandemic: An Inclusive Study. Social Sciences 11: 198. [Google Scholar] [CrossRef]
14. Rameka, Lesley. 2017. Kia whakatōmuri te haere whakamua: ‘I walk backwards into the future with my eyes fixed on my past’. Contemporary Issues in Early Childhood 17: 387–98. [Google Scholar] [CrossRef]
15. Rojas-Pernia, Susana, and Ignacio Haya-Salmón. 2022. Inclusive Research and the Use of Visual, Creative and Narrative Strategies in Spain. Social Sciences 11: 154. [Google Scholar] [CrossRef]
16. Sergeant, Sofie, Henriëtte Sandvoort, Geert Van Hove, Petri Embregts, Kim van den Bogaard, Elsbeth Taminiau, and Alice Schippers. 2022. On the Road Together: Issues Observed in the Process of a Research Duo Working Together in a Long-Term and Intense Collaboration in an Inclusive Research Project. Social Sciences 11: 185. [Google Scholar] [CrossRef]
17. Strnadová, Iva, Julie Loblinzk, and Joanne Danker. 2022. Sex Education for Students with an Intellectual Disability: Teachers’ Experiences and Perspectives. Social Sciences 11: 302. [Google Scholar] [CrossRef]
18. Walmsley, Jan, and Kelley Johnson. 2003. Inclusive Research with People with Learning Disabilities: Past, Present and Futures. London: Jessica Kingsley Publishers. [Google Scholar]
19. 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. [Google Scholar] [CrossRef]
20. Whitman, Walt, Frank Brewer Bemis, Richard Maurice Bucke, Clarence Cook, Edward Gordon Craig, Eugene Field, John Stuart Groves, et al. Leaves of Grass. [Brooklyn, New York: Walt Whitman, 1855] Pdf. https://www.loc.gov/item/03023679/.
21. Zaagsma, Miriam, Mark Koning, Christien van Andel, Karin Volkers, Alice Schippers, and Geert van Hove. 2022. A Closer Look at the Quest for an Inclusive Research Project: ‘I Had No Experience with Scientific Research, and then the Ball of Cooperation Started Rolling’. Social Sciences 11: 186. [Google Scholar] [CrossRef]

Manuscripts can be submitted until the deadline of 1 October 2023. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the Special Issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (between. 100-200 words) can be sent to the Editorial Office for announcement on this website. Enquiries can also be made directly to Prof Emerita Patricia O’Brien, Guest Editor, patricia.obrien@sydney.edu.au Digital abstracts also are encouraged as can be found in the de Hass article referenced above.

Prof. Dr. Patricia O’Brien
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a double-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Social Sciences is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 1400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

1. Title: “Will I Be Celebrated at the End of This Training?” Inclusive Research in Kenya
Abstract: The development of inclusive research reveals challenges and lessons that require concerted efforts to inform the future practice of inclusive research, as well as to ensure no one is left behind like in the past, when people with intellectual disabilities did not conduct research about themselves or with their community. In Africa, inclusive research still lags behind due to societal misconceptions that portray people with intellectual disabilities as being unable to self-advocate or as lacking agency and self-determination. Efforts to conduct inclusive research are undermined by the attitudes and gatekeeping of ethics committees, governments, disability organizations, researchers, parents and guardians. These disenfranchising factors combined with a lack of confidence experienced by people with intellectual disabilities and limited financial resources to conduct research, create a challenging environment to develop and promote inclusive research. This paper will discuss and reflect on the strategies and methods used to conduct an inclusive research study in Kenya. Three people with intellectual disabilities were trained to serve as co-researchers as part of this project. The paper will present details about training the co-researchers, the immersion in fieldwork and experiences of the co-researchers in the field, the research procedures of the study, and the successes and challenges encountered throughout implementing the study. Finally, this paper will reflect on the lessons learned while conducting inclusive research in Kenya.

2. Title: Self-Advocacy in Inclusive Research
Abstract: The literature on inclusive research has established its relationship with self-advocacy for people with intellectual disabilities. Self-advocacy has been described as both a requirement and a result of inclusive research. Additionally, the process of becoming an inclusive researcher can be seen as self-advocacy for people with intellectual disabilities. As inclusive research continues to become more prominent, and more people with intellectual disabilities become inclusive researchers, we need to continue to consider this fundamental relationship and how self-advocacy and inclusive research can inform and support each other. In this paper we first discuss the history of self-advocacy and inclusive research, and what inclusive researchers have shared about the relationship between self-advocacy and inclusive research. We then present the experiences of an inclusive researcher with intellectual disability and how the process of becoming an inclusive researcher impacted her role as a self-advocate We conclude the paper with reflections on how future inclusive research should consider the role of self-advocacy.

3. Title: What Philosophy Can Teach Us about Inclusive Research
Abstract: In inclusive research, researchers work together as a duo with different capabilities. In a highly individualized society, this concept of inclusive research conflicts with the normative concept of the subject being independent and autonomous. This paper centers on a conversation with two (co)researchers who have experience of doing inclusive research together. In an extended interview the researchers reflect on their experiences as a research duo drawing on philosophical concepts covering the idea that persons never are fully alive on their own but are always dependent on others, defined as relational autonomy (MacKenzie, 2014), the idea that your person always lives in a network of others, known as a porous subject (Taylor, 2007) or as a dividual (Strathern, 1988). The paper aims to discuss the implications of this conversation for reviewing the definition of inclusive research.

4. Title: Doing Research Differently: Taking the Lead from People with Profound Intellectual Disabilities
Abstract: This paper pursues the argument made in the previous special issue that finding a way for people with profound intellectual and multiple disabilities to belong in inclusive research requires starting from deep knowledge of the people in question. This paper illustrates this idea in action showing what can be possible from building research around ‘being with’ people with profound intellectual disabilities, creating intersubjective knowledge together. It follows the journey of fostering a relational research space that a young person with profound intellectual disabilities can occupy, their assenting to share the space, and ensuing exploring together in embodied ways. Vignettes show where this particular open road of inclusive research can lead. The analysis interacts with provocations from decolonising research that demand respect for wider ways of: knowing, doing research, and being human. The paper invites reflection on the ways in which research needs to be deconstructed to be inclusive for all.

5. Title: Cooperation with Persons with Intellectual Disabilities. Reflection of Co-Researchers Associated with Conducting Inclusive Research
Abstract: Inclusive research involving people with intellectual disabilities as co-researchers, despite its scientific merit and practical usefulness, has only recently become a subject of interest in Poland. The added value of inclusive projects should be analyzed from two perspectives, i.e. co-researchers with disabilities and co-researchers without disabilities. In this article, we present the latter perspective represented by Polish researchers without disabilities who have experience in conducting inclusive research with people with intellectual disabilities. The aim of the analysis, based on observations, conversations, and field notes, was to discuss: (1) the process of building relationships in the research team; (2) opportunities and constraints associated with the implementation of projects; (3) institutional barriers relevant to the participation of people with intellectual disabilities and the quality of cooperation; (4) the importance of the role of a co-researcher without intellectual disability. The key aspect of the analyzes was to draw attention to the potential of persons with intellectual disabilities as co-researcher. As a result, we indicated several important aspects of inclusive research in the relational perspective: a co-researcher with a disability – a co-researcher without a disability, and the community perspective: a co-researcher with disabilities in the environment of the institution in which he/she is recruited, a co-researcher with disabilities in the family environment, and a person without disabilities as a co-researcher in an institution for persons with intellectual disabilities.

6. Title: Pushing Boundaries
Abstract: This paper reports on and discusses two studies: sexuality and intellectual disability, and parenting and intellectual disability. Both studies address taboos and push boundaries in content and methodology through inclusive research. A main researcher/interviewer for both studies has an intellectual disability himself. He brings an insight and approach to the research that would otherwise be inaccessible for researchers without lived experience. Furthermore, his interviewing people with intellectual disability directly through qualitative research methods including in-depth interviews, case studies, cross-disciplinary discussion groups and contact moments between families and researchers, pushes the boundaries of who is traditionally ‘allowed’ to produce knowledge in research. Boundaries were also pushed associated with the topics investigated by this researcher on sexuality and parenting with intellectual disability. They are interrelated subjects that are often seen as taboo and a potential cause for unsafe situations. The study on sexuality aims to counter negative narratives in hegemonic discourse by focusing mostly on interviewees’ positive experiences, and on the normalisation of the topic. The study on parenting in turn shows how the integration of a techno-social assistive device into the family dynamic allows parents to articulate their needs in different terms, thereby offering a positive approach to interdependence and the possibilities of parenting with intellectual disability.

7. Title: Disability Theatre as Participatory Action Research: Methodological Lessons for Inclusive Research
Abstract: Informed by critical disability studies and disability justice, this article presents an example of inclusive research in practice where self-advocates, theatre artists, researchers, and a community living society collaborated together to create social justice-oriented disability theatre as participatory action research (PAR). Methodological insights regarding inclusive PAR are discussed with respect to three areas: (1) setting the question(s) and co-constructing research methods; (2) conducting the research; and, (3) knowledge translation and dissemination. This article demonstrates that inclusive research in practice can vary depending on the specific goals, methods, and needs of the project and its’ stakeholders.

8. Title: Collaborative Relationships in Inclusive Research: Experiences and Social Integration of Individuals with Intellectual Disabilities
Abstract: This study examined the experiences of collaborative relationships in inclusive research involving individuals with intellectual disabilities. Drawing upon the intergroup contact theory, the research explores work relationships, social relationships, and factors influencing the social integration of co-researchers with intellectual disabilities within inclusive research teams. Interviews were conducted with nine co-researchers with intellectual disabilities, eight academic co-researchers, and ten principal investigators involved in six inclusive research projects. Four key themes emerged: (1) the input and expertise of co-researchers with intellectual disabilities, (2) striving for equality between co-researchers with intellectual disabilities and academic co-researchers, (3) the impact of principal investigators on social integration, and (4) the potential role of stereotyping in hindering social integration. These findings have implications for research and practice in promoting inclusive research environments and facilitating meaningful participation of individuals with intellectual disabilities.

9. Title: ‘The Ball of Cooperation Rolls on’ Personal Reflections on My Experiences as a Researcher
Abstract: It is increasingly common for people with intellectual disabilities to be actively involved in research projects. This is often arranged through temporary contracts and collaborations. However, some people have the opportunity to continue this work for longer periods of time and can build career paths as researchers. This is also the case for the first author of this paper. For almost six years he has been working as a researcher. He has participated in several projects, which are diverse in terms of topic, design, scope and type of collaboration with fellow researchers. In this paper, the first author looks back on his experiences over time. Together with his colleagues, he reflects on his contribution to various projects, his own development as a researcher, and the impact of the work on his personal life. He observes that through his work, the meaning of the motto ‘Nothing about us, without us’ is becoming increasingly intertwined in his life and identity.

10. Title: Life Story Research with People Aging with Intellectual Disabilities: An Adaptation of the Lifeline Interview Method
Abstract: A key feature of inclusive research is the accessibility of research procedures to meaningfully engage people with intellectual disabilities in research processes. Creating accessible research procedures requires innovations in methods traditionally used in research. This paper describes how the Lifeline Interview Method by Assink and Schroots (2010) was adapted and implemented in a study using life story research to better understand the aging experiences of adults with intellectual disabilities. Twelve adults with intellectual disabilities over age 50 participated between two and seven times in interviews about their life histories. The interviewer assisted in the construction of timelines of key events in the participants’ individual life stories and the participants decorated their lifelines throughout the course of the interviews. The lifeline process was an effective tool to engage the participants in the research process, to support participation and to provide access to retrieve life experiences.