Noticing that We are Upside Down

This insightful document, “Noticing That We’re Upside Down” by John O’Brien, explores how person-centered planning can transform the lives of people with intellectual and developmental disabilities (ID/DD). It emphasizes designing supports tailored to individual interests, capacities, and challenges, rather than relying on rigid, predetermined programs. ​ Using seven guiding “How might we…?” ​ lenses—community, relationships, valued roles, power-with, resilience, commitment, and inner journey—the document encourages creative thinking to unlock possibilities for inclusion and contribution in society.

O’Brien highlights the harmful impact of “upside down lenses,” or misperceptions, that perpetuate exclusion and limit the potential of people with ID/DD. ​ These distortions, such as viewing individuals as “eternal children” or “better off dead,” obscure their humanity and reinforce segregation. ​ By naming and resisting these negative perspectives, planners can foster meaningful roles, autonomy, and resilience. ​

The document also critiques traditional systems that prioritize program placement over individualized support, advocating for co-creation of community-based roles and relationships. ​ It calls for a shift from bureaucratic cost-control measures to imaginative, person-centered approaches that empower individuals and their allies. ​

Ultimately, this work is a call to action for families, professionals, and communities to embrace inclusive practices, challenge outdated perceptions, and co-create supports that enable people with ID/DD to lead valued, purposeful lives. ​ It’s a thoughtful guide for anyone committed to building a more just and inclusive society. ​