Abstract

Inclusive research is an approach in which individuals with intellectual and/or developmental disabilities (IDD) are included as co-researchers throughout the research processes, and has demonstrated benefits for people with IDD. Because inclusive research is still not common within disability research, it is important for research teams to provide reflections and lessons learned to encourage future inclusive approaches. This paper provides case studies of two research projects completed in collaboration with adults with IDD using Photovoice as an approach that can increase access to the research process for co-researchers with IDD. Drawing upon previously defined inclusive research criteria, we reflect on lessons learned and challenges. Inclusive research requires time, flexibility, shared power, clear communication, and cultural humility. Across both studies, we discuss the importance of clear communication with Institutional Review Boards and collaboration with the extended support networks of individuals with IDD. We reflect on how the accessible nature of Photovoice supports inclusive research teams to combine the strengths of co-researchers with IDD and academically trained researchers, such that the knowledge production process is shifted to co-researchers with IDD.

Highlights

  • Individuals with intellectual and/or developmental disabilities (IDD) are a population of people who have been historically marginalized and experience health and wellness inequities (Havercamp, 2015)

  • We describe two studies that implemented the Photovoice methodology (Wang & Burris, 1997) within the context of inclusive research with individuals with IDD: 1) an exploration of health and wellness with individuals with IDD from a Native American community; and 2) an exploration of social capital with adults with IDD in an urban environment

  • The research was initiated by academic researchers based on their previous knowledge about disparities experienced by people with IDD

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Summary

Introduction

Individuals with intellectual and/or developmental disabilities (IDD) are a population of people who have been historically marginalized and experience health and wellness inequities (Havercamp, 2015). A large service provider for people with IDD in Chicago, Illinois designed an intervention called ‘Life Like Any Other.’ This program was funded by the Illinois Council on Developmental Disabilities. The aim of this intervention was to better integrate 30 residents of four Community Integrated Living Arrangements into their neighborhoods through participation in community, civic, faith-based, and special interest organizations. This project afforded local organizations a chance to understand the skills and abilities that people with disabilities can bring to the work of the community. Interest inventories were ­completed with the residents and they were matched with local activities

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