Research for Social Change
The Method is the Message: Inclusive Research Today was the topic of the keynote address at the 17th ISSIDD World Congress held in Chicago in August of 2024. What is inclusive research and why is it important? Covering the 4 C's Community, Clarity, Creativity and Cooperation, the panel focused on the idea of “producing justice while producing research”. What is inclusive research and why is it important? Inclusive Research (ICR) represents movement away from the traditional research paradigm of the researcher being outside of or at arm’s length from the research subjects. Instead ICR seeks to be intentional and purposeful about including those who are experts in and have firsthand experience with the phenomenon under inquiry. It is a hermeneutical approach to research. The numbers plus narrative approach creates more impactful research and without the involvement of and engagement with people who have lived experience the full context of the phenomena is missed.
The motto nothing about us without us has been the call to action within the disability community and communities of marginalized and vulnerable populations since James Charlton's seminal work of the same title was published. Based upon the principle of full and complete participation, Research about the IDD experience should not be conducted exclusive of the voices, experiences, skills and contributions of people who experience IDD most directly. From the idea hermeneutical injustice to policies and practices that wrong and excluded researchers with intellectual disability, to a fresh look at Charlton's seminal publication in light of the DEI movement and beyond NOIRE examines the landscape of inclusive research and shares who is doing what with whom and why.
Models of Disability
A more recently developed approach to disability, the CDS viewpoint is closely associated with the social model of disability….
The March 2024 issue of Inclusion features an article by Wendy Parent-Johnson and Austin Duncan that looks at the role of inclusive practices in the academic setting of a UCED .
Theories and Approaches
The work of Walmsley and Johnson predates the DEI movement by some 30 years NOIRE reviews their work and its intersectionality with other marginalized groups.
Inclusive research is not necessarily a new concept. Both participatory and emancipatory research models have peppered the landscape of research methodology for years. ICR's intersection with these long standing approaches to insight became part of the lexicon in 2003 and since that time....
In the works...
"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," Krueger, van Heume and van den Helder (2023). NOIRE does a deeper dive into the intersection between self-advocacy and inclusive research
Conducting and disseminating research that informs peers, the wider public, and policymakers about a vital phenomenon is critical to our functioning society in general. Relevant research contributes to policy decisions, budgetary priorities and service delivery models. Being a co-researcher that is engaged in every part of the study, from development to incentivizing and recruiting participants, phrasing survey questions, interpreting findings, is the epitome of a socially valued role as defined by Wolfensberger, which he asserts is critical to a full and equal place in one's community, regardless of variations in form and function. NOIRE examines the researcher as a socially valued role.
I want to go to the mall. Today I will spend the day outside at the park. My long-term goal is to complete my college degree and find employment as a software engineer. These are examples of goals, thoughts, and objectives we state for ourselves every day to one degree or another. Sadly, there is a segment of our population that continues to be deprived of this, which most would consider a fundamental human right. NOIRE takes a look at the RIGHT to self-determination…
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In 1987, as state-run institutions that warehoused people with intellectual and developmental disabilities were giving way to the community living movement, applied behavioral analysis and cognitive behavioral therapies were taking hold as suitable interventions for people with complex needs and person-centered thinking, and the PATH model was being developed. Four gentlemen introduced a framework that challenges the paradigms of support structures, behavioral interventions, and the entire infrastructure of human service delivery systems. NOIRE revisits the Gentle teaching Framework as the most logical posture for human service delivery systems and the people who make their living in support of our friends, neighbors, program participants, and fellow citizens who experience intellectual and developmental distinctions...