Team leads special journal edition on including people with disabilities in research

To further research that is co-led by people with and without intellectual and developmental disabilities, a team at the University of Kansas has edited a special issue of the journal Inclusion. It features articles from people who are advancing inclusive research and includes six firsthand accounts from researchers with intellectual and developmental disabilities.

A man wearing a blue button up shirt who appears to have Down syndrome sits in an office environment with coworkers surrounding him as they smile together

A team from the KU Center on Developmental Disabilities in the Life Span Institute led the development of the Special Issue of Inclusion, the e-journal of the American Association on Intellectual and Developmental Disabilities.

“We think inclusive research is just the right thing to do. But we really want to emphasize that it also leads to better research that's more impactful for people. That's why breaking down structural barriers is so important. We have to create career pathways and opportunities for people with intellectual and developmental disabilities to be paid, equitable members of research teams,” said Karrie Shogren, Ross and Marianna Beach Distinguished Professor of Special Education and director of the KU Center on Developmental Disabilities. 

“The firsthand accounts in the Special Issue provide key direction for inclusive research practices, but this is one of the very first times that those accounts have been published in a peer-reviewed journal,” she said. “We’re really trying to push the boundaries and elevate lived experience and create teams that co-create meaningful knowledge.”

Brad Linnenkamp, assistant researcher and community liaison in KUCDD, is a journal contributor. As an individual with a disability, he had a long career in advocacy before joining the research team. He wrote about the work he has contributed to helping community members with disabilities learn more about COVID-19, understanding their experiences more fully and helping to break down barriers to participation in both research and society.

“I think the goal of this whole thing is to break down barriers. I'd like to see it become part of the norm when it comes to including people in any type of work, research or otherwise, making sure the perspectives of people with all types of disabilities are included,” Linnenkamp said. “Hopefully we'll be able to continue to move this forward, getting the information out to people, and in the long run, being able to find paid positions for people like myself and others to become part of research teams.”

Evan Dean, associate director of the KU Center on Developmental Disabilities, said that while inclusive research is growing, it still has a long way to go in ensuring that all voices are equitably included in the research process. 

“There is a need for more robust research team structures that go beyond simply involving the community in interviews or focus groups or on advisory boards," he said. “There's not strong representation from people with lived experience in the literature or on research teams. So, we really wanted to highlight the voices of people with intellectual and developmental disabilities as a part of the scientific literature, as authors, co-authors and as part of the entire research and publishing process."

The special issue also includes articles that provide recommendations on how to plan, conduct and disseminate inclusive research as well as use policy to advance inclusive research.

The issue is one part of KUCDD’s efforts to make inclusive research the standard and an expectation in the disability field. The center has led webinars on the topic and made accessible presentations at national conferences. It also has a current grant that is advancing training opportunities, offering a learning series on inclusive research for adults with intellectual and developmental disabilities who are interested in research careers.

Askia Adams, a research assistant at KUCDD who wrote an article for the issue, noted the importance of partnering with people with lived experience on research teams.

“People with disabilities have unique insight into topics concerning disability, which need to be a part of the research," Adams said. "For example, someone who uses a communication device would be able to help design a research project related to augmentative communication. Their experience would enable them to provide insight into what is needed for individuals in that community.”