“The genetic condition constitutes me, but it does not define me”: a collective biography of people with albinism in Brazil

Résumé

Albinism is a relatively rare, non-contagious, genetically inherited condition that is still permeated by discrimination and stigmatization today. The objective of this research was to present the life experiences of people with albinism and their relationship with the condition, using their trajectories and narratives in the form of collective biography. Qualitative research was conducted using Merton’s focused interview techniques and snowball sampling method. The group’s collective biography was constructed to show the trajectory and experiences of the group through an intertwined narrative of the participants’ statements. The experiences of these people were addressed in the dimensions of birth and family; adolescence and the school universe; the world of work and professional journey; health care and strategies for overcoming their own condition. Throughout this group’s trajectory, prejudice and stigmatization are experiences lived from the moment of birth and continue throughout life. It is concluded that the lack of information not only perpetuates stigmas around the condition but also prevents these people from having access to accurate diagnoses and necessary care. This emphasizes the urgency of implementing public policies that address the needs of this group.