Participatory Dialogues in Landscapes of Care

Abstract

This thesis explores the lived experiences of disadvantaged young people in their journey toward self-actualization, as well as how participatory research can contribute to this. It is centered around three PAR-projects and builds on a care ethical and participatory action research design. The participants are young people (n=98) who are in one way or another care-dependent: children with juvenile idiopathic arthritis (JIA), girls in secured facilities who had experienced or were at risk of sexual exploitation, and young adults with developmental language disorder (DLD). In each study, the participants iteratively reflected their experiences and needs for their daily lives as they also created awareness how society can be more responsive to this. The participatory dialogues revealed that disadvantaged young people feel that others do not take them as they are, as they constantly have to adjust themselves to be accepted (identity politics). Furthermore, they also feel they have to act different to get the care that they need (care politics). They need to magnify their capabilities to get opportunities for self-actualization and to magnify their disadvantages so they can be acknowledged as ‘care-dependent’, a prerequisite to receive professional support. They call for more space to be who they genuinely are and to get the care that is adjusted to their needs. Overall, I bring to the attention that young people need—and deserve—a multipolar society that provides spaces for their personal capabilities, needs and perspectives, where being normal stands for being unique. This is a step toward combatting stigma that causes young people’s feeling of embarrassment and their hard work to be acknowledged, accepted and valued as important citizens in society. I make a plea for societal and government authorities to treat young people as serious partners in the shaping of such landscapes of care with equal opportunities for active and authentic societal participation. An ideal world is one where young people themselves no longer have to struggle for their recognition. As long as we have not achieved this, I posit, participatory research is an urgent need.