Supporting the gifts of First Nations adults living with exceptionalities: a qualitative exploration of lived experience.

Abstract

To explore First Nations understandings of disability and exceptionality and the lived experiences of First Nations adults living with disabilities in Manitoba, Canada. Guided by community-based participatory research and Indigenous methodology, this study was led by a First Nations organization with oversight from an Advisory Circle. A modified grounded theory informed data collection and analysis. Twenty-one First Nations adults with disabilities and eleven family caregivers participated in conversational interviews. Findings were validated by participants, the Advisory Circle, Knowledge Keepers, and First Nations health and social experts. Six themes emerged: (1) Culture as Foundation; (2) Self-Determination and Person-Centered Care; (3) Caring for Caregivers; (4) Social Determinants of Health; (5) Inequitable On-Reserve Supports and Systemic Barriers; and (6) Research and Data. Culture, language, and ceremony were described as central to inclusion and well-being, while systemic inequities-poverty and other social determinants, inaccessible environments, and jurisdictional gaps-exacerbated exclusion and distress. Findings underscore the need to reframe disability supports for First Nations adults through Nation-led, culturally grounded, and life-course approaches. Advancing self-determination, caregiver supports, and data sovereignty is critical to achieving equitable and sustainable systems of care for First Nations adults with exceptionalities.