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People with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author of this paper. He has worked as a researcher for almost six years. He is involved in various projects, all highly diverse in terms of subject, design, scope and collaboration with fellow researchers. In this paper, he looks back on his experiences in recent years. Together with colleagues, he reflects on his contribution to the various projects, his own development as a researcher and the impact of the work on his personal life. He finds that the essence of the motto 'Nothing about us, without us' has become increasingly intertwined with his life and identity through his work. [ABSTRACT FROM AUTHOR]

Formal language: This paper discusses inclusive research and epistemic justice by using an example of a published study the authors conducted on intellectual disability and sexuality in supported living environments. Our study addressed taboos and pushed boundaries in content and methodology through two ways of inclusive research: (1) the second author of this paper who has an intellectual disability was a main researcher in the study; and (2) we interviewed people with intellectual disabilities about their own experiences as well as their desired solutions to obstacles they face in their supported living environments. Their input was centralized in the final research report. This method challenged the epistemic injustice of who have historically not been 'allowed' to produce knowledge in research. This paper offers historical insight into epistemic injustice as well as relational approaches from critical disability studies and non-Western understandings of disability that 'rethink' disability and that can thus promote epistemic justice in academic theory. By addressing both practice and theory in this paper, we aim to contribute to the growing body of inclusive research and to the epistemic justice of people with intellectual disabilities. Plain language: (1) Epistemology = thinking about knowledge, producing knowledge, sharing knowledge. (2) In history, people with intellectual disabilities have often been excluded from participating in this. This is called epistemic injustice. It is caused by the discrimination of people with intellectual disabilities (ableism). (3) Performing inclusive research with people with intellectual disabilities challenges this. It contributes to epistemic justice. Researchers and interviewees with intellectual disabilities can bring knowledge from lived experience into research. (4) Knowledge from lived experience has not always been valued in traditional research. That means we also need to think differently about 'knowledge', and about 'disability' and its 'value'. (5) Discrimination based on disability has a long history. For instance: during colonialism by European countries (starting in the 15th century), false ideas about 'poor health' and 'low intelligence' were already used to justify slavery. People with disabilities have often been locked away or even killed because they have been seen as 'less valuable'. These ways of thinking still exist. They influence our understanding of 'epistemology' because they decide whose way of thinking and way of life is valuable or not valuable. We need to change this way of thinking. (6) Some academic fields that help are critical disability studies, indigenous studies, and feminist posthumanism. These fields challenge ableist ways of thinking. They can help us understand disability as something that is not negative or less valuable, but simply part of what makes us human. [ABSTRACT FROM AUTHOR]

This paper pursues the argument that finding a way for people with profound intellectual and multiple disabilities to belong in inclusive research requires starting from a 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 and multiple disabilities can occupy, their assenting to share the space and ensuing exploring together in embodied ways. Small stories 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. [ABSTRACT FROM AUTHOR]

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 with self-advocacy and how the process of becoming an inclusive researcher impacted those experiences. We conclude the paper with reflections on how future inclusive research should consider the role of self-advocacy. [ABSTRACT FROM AUTHOR]

The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research. [ABSTRACT FROM AUTHOR]

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 was adapted and implemented in a study using life story research to better understand the experiences of older adults with intellectual disabilities. Twelve adults with intellectual disabilities over the age of 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, support participation, and provide access for people with intellectual disabilities to retrieve their life experiences. Challenges in the lifeline process included barriers to gathering sufficient information to construct timelines and gatekeepers withholding access to information. [ABSTRACT FROM AUTHOR]

Co-researchers with intellectual disabilities and a Ph.D. student formed an inclusive research team. The co-researchers joined the inclusive research team so they could learn more about research and have control over the research. Our team have held regular research skills meetings. The focus of these meetings was getting to know each other and learning what each person brought to the team, as well as learning what inclusive research is and how to conduct research together. Learning these things has helped to design and undertake an inclusive research project about pets for people with intellectual disabilities. In this article, our team shares our experience of conducting inclusive research. We have learnt that each team member brings their own strengths to the team and we have connected and formed friendships. We completed an inclusive research project and found there were some challenges our team had to overcome. We conclude that people with intellectual disabilities are capable of leading research. Being part of an inclusive research team enables co-researchers to show others what they can do. Sharing what our team has found out can help others to conduct inclusive research. [ABSTRACT FROM AUTHOR]

Housing and future planning have been key areas of interest in intellectual and development disabilities research for a number of decades. However, the voices of adults with intellectual disabilities are underrepresented in this area of research. Furthermore, the use of inclusive research methods remains limited in the literature. This study sought to pilot the use of inclusive research approaches to investigate the viability of these methods and to begin to build an evidence base of inclusive research in this area of work. Inclusive data analysis and co-authorship approaches were used on a small qualitative dataset from a larger study investigating future planning and transitions out of the family home by adults with intellectual disabilities and their families in Australia. Three semi-structured interviews with adults with intellectual disabilities and family members regarding their housing preferences and planning were analysed using an inclusive data analysis approach following the principles of Interpretative Phenomenological Analysis. These were then further analysed using a plain language version of the housing pathways framework. The results of the pilot study will be used to inform the inclusive research methods used for the remainder of the project dataset. Overall, the use of inclusive methods to pilot a conceptual model to better understand qualitative data was found to be feasible. Small adjustments to the process and accessibility to better support engagement with the research process are recommended. Lastly, greater investigation into co-authorship approaches and options is suggested as a fruitful avenue of inquiry for future research. [ABSTRACT FROM AUTHOR]

Traditionally, persons with intellectual disabilities in Poland have been researched on and treated as not competent enough to research with. Despite its scientific merit and practical usefulness, inclusive research involving persons with intellectual disabilities as co-researchers has only recently become a subject of interest in this country. The added value of inclusive projects should be analysed from two standpoints, i.e., those of co-researchers with disabilities and co-researchers without disabilities. In this article, we discuss the latter perspective, focusing on Polish researchers without disabilities who have experience in conducting inclusive research with persons with intellectual disabilities. The key aspect of the analyses was to highlight the potential of persons with intellectual disabilities as co-researchers. As a result, we have determined several important aspects of inclusive research in the relational perspective involving co-researchers with intellectual disabilities and co-researchers without intellectual disabilities and the community perspective. The analyses identified four superordinate themes: building relationships in the research team; opportunities and constraints associated with the implementation of inclusive projects; institutional barriers; and the importance of the role of a co-researcher without intellectual disabilities. Implications for further research and practice are discussed. [ABSTRACT FROM AUTHOR]

Informed by critical disability studies and disability justice, this article describes the reflections of two university researchers co-researching with self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society to create social justice disability theatre as critical participatory research (CPAR), demonstrating how disability theatre can contribute to and advance inclusive research practice. Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities; offers a platform where self-advocates' diverse ways to communicate and be in the world are honoured and taken up as resources to the research and community; and can generate mentorship opportunities for self-advocates to learn, practice, and develop research skills. Significances include showing how the theatre creation process (devising, developing, and refining scenes) is research in itself and how tensions are recognized as sites of possibility. Future research should explore how increasing pathways to communication, co-creation of KT strategies, and protocols for power sharing and problem solving within disability theatre as CPAR impact the roles, outcomes, and experiences of disabled and non-disabled researchers and audience members. [ABSTRACT FROM AUTHOR]

Inclusive research teams actively engage people with intellectual and developmental disabilities at all stages of research development, implementation, and dissemination. There is a dearth of research that specifically addresses the use of peer support in research engagement, yet research using peer support may provide a useful framework for engagement in inclusive research teams. A rapid scoping review was completed following the reporting guidelines for PRISMA-SCR. The scoping review identified five peer support roles (communication, sharing experiences, helping peers to learn, peer development, and creating a welcoming environment) and two types of support and accommodation for peer supporters (individual and environmental). The findings of the rapid scoping review aided in developing key sections of a Peer Support Toolkit to help people with intellectual and developmental disabilities engage in research to create more inclusive research teams and research that is informed directly by the needs of people with lived experience. The scoping review and toolkit were completed by an inclusive team. [ABSTRACT FROM AUTHOR]