In the realm of disability studies and inclusive research, two remarkable individuals have carved a path that highlights the power of collaboration and the importance of lived experience. Dr. Lieke van Heumen, a faculty member in the Department of Disability and Human Development at University of Illinois Chicago (UIC), and Courtney, an Athlete Leader and Health Messenger at Special Olympics Illinois, have formed a dynamic partnership that has impacted the field of disability studies.

Health Messenger Courtney talking about her lived experience with a disability

Lieke: Advocate and Scholar

Lieke's advocacy began in the Netherlands, influenced by her mother’s work with people with disabilities. This early exposure led her to pursue a PhD in disability studies at UIC, where she now teaches and researches aging and disability. She is dedicated to creating inclusive learning environments and research teams that integrate the voices of individuals with disabilities. This commitment has garnered support from Special Olympics International for several of her projects.

Courtney: Athlete to Advocate

Courtney’s advocacy journey started with her involvement in Special Olympics Illinois, where she participated in various sports. In 2017, she became an Athlete Leader, advocating for people with intellectual disabilities. A year later, she became a Health Messenger, promoting healthy living among fellow athletes.

Power of Collaboration

Professor Lieke and Courtney posing for a picture

Lieke and Courtney’s paths converged when Lindsay DuBois, former Director of Research and Evaluation at Special Olympics, introduced her to Lieke. Over the past five years, Courtney and Lieke’s work together has exemplified the importance of inclusive research.

Their projects have ranged from developing engaging and accessible health screenings for athletes to creating training programs for co-researchers with intellectual and developmental disabilities. One notable project involved producing brochures and videos on topics such as blood pressure and aging, tailored to be easily understood by athletes. They sought feedback from athletes worldwide, ensuring the materials were accessible and effective.

Impact and Recognition

The impact of Lieke and Courtney’s work is far-reaching. They have presented their findings at numerous conferences, both in the United States and internationally, and published several papers. Their research emphasizes the critical role of self-advocacy in inclusive research, as highlighted in their publication, "Self-Advocacy in Inclusive Research." Another significant contribution is their paper, "The development of a co-researcher training with and for people with intellectual and developmental disabilities," which outlines a methodology for involving people with intellectual and developmental disabilities in the research process.

Their collaborative efforts were recently showcased during a trip to the Netherlands, funded by a grant from University of Illinois Urbana-Champaign. They delivered lectures at the Netherlands Institute for Human Rights, the University of Amsterdam, and the University of Utrecht, and engaged with a self-advocacy group at Stichting Cello.

A Shared Vision

A group of people posing for a picture

Lieke and Courtney’s partnership is founded on mutual respect and a shared vision of inclusivity. Lieke admires Courtney's passion for supporting people with disabilities, and Courtney’s advice to others encapsulates their mission: “If you have a dream, never give up... Have faith, confidence, and stay true to yourself.”

Their work advances disability studies and sets a precedent for inclusive research practices, demonstrating the impact of valuing diverse experiences.

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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.