Acceso usuarios
Félix González Carrasco, Vanessa Vega Córdova, Izaskun Álvarez Aguado
El cuidado está inserto en el desarrollo de las sociedades modernas, en la configuración de la conciencia humana y su condición viviente desde lo común. En el campo de la discapacidad intelectual (DI), el cuidado debe comprenderse desde la interdependencia; solo desde esa comprensión es posible avanzar hacia la plena participación de las personas con DI en aspectos relevantes y transformadores de sus vidas. Asimismo, puede incidir en las políticas y los derechos de una población históricamente discriminada. Con el objetivo de comprender los modos en los que se construye el cuidado en este ámbito, se han analizado desde una perspectiva cualitativa mediante entrevistas semiestructuradas, las narrativas identitarias de seis personas adultas con DI residentes en Chile. El estudio desde las narrativas permite comprender la construcción que los sujetos hacen de sí, y los elementos dominantes que orientan su acción en la sociedad. Los principales resultados evidencian que el cuidado se comprende desde las necesidades y la vida independiente de estas personas, lo que permite la construcción de procesos identitarios en los que se reconozca activamente la disposición de participar de los cuidados, transformar a otros y al mundo del que forman parte. Esto contribuye a investigar la mirada existente respecto al paradigma de cuidado, ya que se profundiza en nuevos modos de comprender y conceptualizar los estudios en este campo, desde una perspectiva interrelacional y ética del cuidado, que contribuya a la participación y derechos de las personas con discapacidad intelectual.
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.
intellectual disability, care, ethics of care, adults with disabilities, identity narratives
