How workplaces produce or reduce disability along the career paths of young people with cystic fibrosis

Résumé En

Using the theoretical perspective of “social participation” as considered in the Human Development—Disability Creation Process, this article examines certain obstacles and facilitators to sustainable access to work among young French adults with cystic fibrosis. Drawing from the analyses of 29 qualitative interviews, the results show how such obstacles do not depend solely on their health status or on the medical management of the illness, but also on the work environments that these young professionals have recently entered or are trying to access. In these contexts, managing information about the illness can represent a means of obtaining cooperation from colleagues and superiors to reduce material or organizational obstacles (e.g. adapted work schedules), as well as a means of preventing socially uncomfortable or disabling situations. In this light, the social participation model can complement Corbin and Strauss’ illness trajectory model, by setting the multi-factorial disabling or participatory situations along illness or medical trajectories. This enables dynamic consideration of how workplaces contribute to producing or reducing disability, in interaction with the actions taken by young people with cystic fibrosis to manage their career paths but also the evolution of illness, symptoms, or medical requirements.