Identity narratives of adults with intellectual disabilities about the concept of care

Care is a fundamental aspect embedded in the development of modern societies and plays a significant role in shaping human consciousness and its collective condition. Traditionally, the paradigm of care has focused on meeting the societal needs of individuals, which is essential for sustaining social productivity and economic conditions. However, care encompasses various dimensions that extend beyond meeting basic needs and highlights ethical considerations and interdependence. Recognizing human vulnerability, care influences processes of repair and transformation, ultimately contributing to a dignified life. In the context of care for individuals with intellectual disabilities (ID), normative and cultural frameworks have often perpetuated power dynamics and domination. Public policies and individualistic approaches to care have marginalized collective responsibility, burdening individuals with ID with greater personal agency and associated costs, while limiting options for support. Consequently, vulnerabilities and exclusions arise, particularly concerning the care provided to individuals with ID. To foster the full participation and inclusion of individuals with ID in transformative aspects of their lives, it is crucial to understand care through the lens of interdependence. This understanding allows for a more comprehensive examination of the policies and rights affecting a historically marginalized population. This study aims to analyze the identity processes shaped by narratives of care among six adults with ID residing in Chile. Through qualitative analysis of semi-structured interviews, the researchers explored the construction of identity and the social processes associated with it, recognizing that individuals’ thoughts and actions are shaped by the narratives they recount. The findings reveal three main perspectives on care. Firstly, care is often perceived in terms of meeting immediate needs, reflecting a traditional bio-medical perspective. Secondly, care is conceptualized within the context of independent living, which introduces tensions in ongoing debates regarding the rights and support systems for individuals with ID. Lastly, a perspective emphasizing different ways of experiencing care emerges, highlighting the active recognition of individuals’ willingness to participate in caregiving and their transformative role in shaping the lives of others and the world around them. These findings deepen our understanding of the care paradigm and contribute to the field of disability studies by exploring novel perspectives that have been relatively unexplored. The orientations of this study aim to advance the comprehension of alternative care models and their implications for disability studies. By adopting an interrelational and ethical perspective, this research contributes to promoting the rights and participation of individuals with ID.