LAWRENCE — For decades, researchers worked to identify the best ways to educate individuals with disabilities, but one key aspect was missing: the experience of those living with disabilities. A research team at the University of Kansas has led the publication of the latest edition of a book that gathers scholarship on educating people with disabilities and does so through an equity lens.
“Handbook of Research-Based Practices for Educating Students with Intellectual Disability, 2nd Edition” provides students, researchers and practitioners with a roundup of research on education across the lifespan. It also features chapters written by individuals with lived experience with physical and intellectual disability and summarizes the work in plain language.
The handbook was designed with three primary themes: Presenting research through an equity lens, challenging the notion that academics have sole domain over discussions of research and an emphasis on accessible, plain language in examining complex concepts. It was edited by Karrie Shogren, Ross and Marianna Beach Distinguished Professor of Special Education and director of the KU Center on Developmental Disabilities; LaRon Scott of the University of Virginia; Evan Dean, associate director, and Brad Linnenkamp, assistant researcher and community liaison in KUCDD, part of KU’s Life Span Institute.
The book features 30 chapters across five sections, contributed by an international slate of authors. Each section begins with a chapter by an author with lived experience relevant to the discussion of research therein.
“I think the real power in the way that we structured the book, with having the lived experience perspective before the chapters in each section, was that I think it highlights the value of that lived experience, and that it needs to be part of the science and part of the context of what students are learning. That information is just as valuable as the research,” Dean said.
The handbook’s 30 chapters are contained in five sections.
- Understanding Intellectual Disability.
- Eligibility, Assessment and Educational Planning.
- Supporting Student Learning in Inclusive Settings.
- Creating Inclusive Schools and Classrooms.
- Education Across the Lifespan.
Chapters strike a balance between a traditional examination of research, personal experiences and how the latest research can benefit students, instructors, families and working professionals such as speech-language pathologists, clinicians, vocational rehabilitators and others.
“We asked authors to think about, has the research adequately included the voices and the experiences of people that have been marginalized by our systems? Because research is only as good as the people that are included in the research,” Shogren said. “And we have a history of primarily targeting kind of dominant identities in a lot of it. We can write chapters on what the research tells us, but if we're not actually including the voices of the people that have tried out and lived these practices, can we really fully understand them? So, a lot of it is just us changing how we think about what that expertise is.”
While the book’s focus is education, it is not limited to the classroom. Education does not end at graduation, and the handbook includes a section on post-school transition including shifting to employment, housing, community inclusion, postsecondary education, health and health care, and related topics.
The goal of the handbook’s first edition was to gather research and best practices for educating students with intellectual disability. That goal was expanded to continue gathering research, but to show that including voices of those living with experience is itself a best practice. Discussing the work in plain language will make it accessible far beyond academic circles as well, according to the editors.
The editors said while inclusive research is growing, there is still work to be done and they hope the book can help others take inspiration to include the voices of individuals with disabilities and intersectional identities as part of research, not just as subjects.
“I just want people to know that people with intellectual and developmental disabilities can contribute to almost anything, if you put your mind to it. Especially if you have the right supports,” Linnenkamp said. “I came into research as a self-advocate, and I'm still an advocate at heart. But I think the way we went about this book is pretty inclusive of people with disabilities, and that's one of the things I'm really proud of.”