Innovators

Jan Walmsley and Kelley Johnson's groundbreaking work in inclusive research with people with intellectual and developmental disabilities (IDD) established foundational principles that predate contemporary diversity, equity, and inclusion (DEI) movements by decades. Their contributions, beginning in the early 2000s, created frameworks that remain highly relevant to today's evolving inclusive research landscape.

The Innovation

Walmsley and Johnson's work emerged during a period of significant marginalization for people with IDD which included being sidelined within the early phases of the disability rights and advocacy movements. An outcome of the civil rights movement, the disability rights movement made great gains in advancing the cause of people with disabilities who had been segregated and excluded from society. However much of the effort to support and advocate for people with disabilities leaned heavily in the direction of what can be called visible disabilities. Notwithstanding this internal marginalization people with IDD were part of a community of people who pushed back against systemic prejudice, discrimination and social spaces within society that were constructed absent of any consideration for the variations of human form and function and any input from the disability community.

The disability rights movement gained many victories through the years such as the Americans with Disabilities Act and the Olmstead decision both of which have positively impacted the lives of millions of people across the country. During this same period research methods were also impacted by the strides made during the disability movement and the idea that research cannot continue to be done to people with IDD but with people. People with Disabilities should be an active part of the process. IN this vein evolving stood out as  challenge to the status quo of maintaining a divide between the researcher and the researched. Close on the heels of participatory research methods were emancipatory and empowerment theories which argued that research should be pertinent to the everyday lives of the people under inquiry and their voice should be represented in that research as a means of empowerment in the efforts to change their own circumstances.

It was in this historical context that Walmsley and Johnson (2003) developed a comprehensive framework to make research accessible to people with intellectual disabilities as resented in their seminal publication Inclusive Research with People with Learning Disabilities: Past, Present and Futures.

This dual approach speaks to the levels of agency and control that people who expereince IDD could exercise in research. The approach also acknowledges capacity-building needs, rights-based aspirations and socially valued roles.

The Core Principle of inclusive research is grounded in Accessibility and Empowerment. Walmsley and Johnson's methodology centered on making research genuinely accessible to people with intellectual disabilities. The model emphasizes the integration of lived experience which stands on the fact that that people who experience IDD are the experts on their lives and possess unique knowledge about their own experiences that neurotypically developed academic researchers do not have, capacity building which focuses on developing systematic approaches to train and support people experiencing IDD as co-researchers, and finally control and agency which seeks to eliminate token superficial or symbolic involvement replaced by meaningful participation and, ultimately, research leadership.

The Innovation

The work of Walmsley and Johnson established practical frameworks for involving people with IDD across each stage of the research process, including question formulation, data collection, analysis, and dissemination. The approach was comprehensive and stood in sharp contrast with traditional research models where people with disabilities were seen solely as subjects of study.

The Diffusion of Inclusive Research

The current landscape of inclusive research indicates significant evolution and diffusion of Warmsley and Johnson's pioneering work into the fabric of current research practices in the field of developmental disabilities research. Several studies show that researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. Indicating broader acceptance and implementation of inclusive approaches, including evaluating the impact of their participation, as in St John et al. (2018), where three co-researchers with IDD were interviewed regarding their research participation. Moreover, a study published in the AAIDD journal by Buck et al. (2023) uses a case study model to examine the involvement of adults with IDD who participated as co-researchers in a series of studies on the mental health of adults with IDD. Other areas that had demonstrated that inclusive research has reached a tipping point where it is no longer considered an experimental idea include studies that have examined the competencies that research with and without IDD are expected to have, a systematic review of the literature on research with IDD by Di Lorito Birt and Hassiotis (2017), and Riches and O’Brien who publish a study where researchers with IDD interview authors of inclusive studies. The concept of "nothing about us without us" in the field of disabilities research has gained traction, and inclusive research is now in its next generation, with studies examining the efficacy and impact of the model itself.

Final Thoughts

Walmsley and Johnson's pioneering work established foundational principles that remain central to contemporary inclusive research with people with IDD and all marginalized communities. Their framework anticipated many current DEI trends while maintaining a distinctive focus on intellectual disability that continues to be relevant. As the field evolves, their emphasis on rights, empowerment, and genuine partnership provides essential grounding for addressing ongoing challenges and opportunities in inclusive research practice.

 The integration of their historical insights with contemporary DEI approaches offers promising pathways for advancing research that is truly inclusive, equitable, and transformative for people with intellectual and developmental distinctions. Their legacy demonstrates that meaningful inclusion requires not only good intentions but systematic, rights-based approaches that recognize and cultivate the research capacity of people with IDD as both subjects and leaders in knowledge creation.