Beyond inclusion and participation: power-sharing and disability justice in participatory action research with disabled youth

Youth Participatory Action Research (YPAR) can democratize knowledge production with disabled youth, challenging oppressive research dynamics. Power sharing is crucial in YPAR, yet the intersection of adultism and ableism remains underexamined. This scoping review addresses two questions: (1) How is power sharing with disabled youth conceptualized in YPAR? (2) How is it practiced? Only 48% of articles conceptualized power sharing, defining it as awareness of power/positionality, democratic decision-making within a youth-rights framework, focusing on youth-adult relationships, and positioning disabled youth as experts and thought leaders in society. Stated participatory design was the most common example of power sharing. Other examples included: training and knowledge sharing, flexible procedures, reflection and feedback, youth support and relationship building, decision-making/group process, minimizing adult involvement, and consent. Challenges to power sharing included concerns about authenticity and full participation, imbalances in knowledge, communication, access, and assistance, IRB and ethical considerations, and relationship dynamics.