Lieke van Heumen and Courtney Krueger promote inclusivity in disability studies research
Text Heading link
Research partners Lieke van Heumen ’15 PhD DIS and Courtney Krueger are impacting the field of disability studies in the United States and abroad as they promote inclusive research practices.
Throughout her career in disability studies, DHD clinical associate professor van Heumen has foregrounded the voices and experiences of individuals with disabilities.
“I believe research becomes more meaningful and relevant when it is conducted in an inclusive way,” van Heumen said during a keynote presentation with Krueger at the International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress on August 6. “It advances knowledge by utilizing the expertise that lived experience brings. It is a privilege to support highlighting that expertise.”
Van Heumen’s commitment to conducting inclusive research and creating inclusive learning environments has garnered support from Special Olympics International, through which she met and began collaborating with Krueger.
Krueger — a self-advocate, athlete leader and health messenger at Special Olympics Illinois — has worked with van Heumen for the past five years on a range of projects. The pair has published research on self-advocacy, created training programs for co-researchers with intellectual and developmental disabilities, developed accessible health resources and more. For Special Olympics International, they created narrated and captioned videos for children and adults with disabilities, covering topics like obesity, high blood pressure, heart disease, mobility, oral health, eyesight and hearing.
Quote Heading link
Inclusive research allows for people like me to be involved and share personal experiences. I am letting other people with intellectual disabilities know exactly what inclusive research is, and I am supporting them to be more included in the process. I also have created a sense of ownership over learning that has increased my confidence.
Text Heading link
Before their most recent talk at the IASSIDD World Congress, Krueger and van Heumen’s collaborative efforts were showcased during a trip to the Netherlands in April, funded by a grant from University of Illinois Urbana-Champaign. The pair gave lectures at the Netherlands Institute for Human Rights, the University of Amsterdam and the University of Humanistic Studies in Utrecht on the topics of advancing inclusive disability policies and intellectual disability culture. They also met with the group Stichting Cello, a local organization supporting the self-advocacy of people with intellectual and developmental disabilities.
Although obstacles to inclusive research practices remain, such as inaccessible ethics trainings or roadblocks in recruiting study participants, Krueger and van Heumen persist in their shared mission: bringing people with disabilities to the table as leaders in disability research.
“Inclusive research can be challenging,” van Heumen said, “but you can only overcome those challenges together.”
Lieke and Courtney’s work is supported by Award Number NU27DD000021, funded by the U.S. Centers for Disease Control and Prevention, the Golisano Foundation, and the European Union Center through support from the US Department of Education’s Title VI NRC Program.
This story has been edited for length and clarity by Emily Parenti-Lopez.