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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]

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]

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]

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]