Narratives of caregivers of people with disabilities

a book written by academics to promote visibility

Abstract

Introduction: The Convention on the Rights of Persons with Disabilities frames disability as a matter of social development and human rights, emphasizing the role of the sociocultural environment in promoting accessibility. Caregivers, predominantly women, face significant challenges, including stress, social isolation, and physical and mental health issues resulting from their caregiving responsibilities.Objective: To report the experience of medical students in writing a book about caregivers of individuals with disabilities. Experience Report: The book was developed between April and May 2024 at a philanthropic institution in Belo Horizonte, Brazil, which supports families and individuals with disabilities. During biweekly community outreach activities focused on health promotion, caregivers frequently shared concerns related to health problems and the lack of time for self-care. Through the practice of active and empathetic listening, the students identified an opportunity to recognize and value these mothers, whose narratives were often marked by invisibility and prejudice. From these encounters, the idea of writing a book emerged, with 12 women participating in the project. The process involved inviting families, collecting personal narratives, compiling them into book format, revising the content with academic supervision, and printing copies for the participants. Final Considerations: The book-writing process highlighted the importance of acknowledging and addressing this topic within the fields of healthcare and community engagement. It offered a new perspective on supporting caregivers of individuals with disabilities, emphasizing the need to improve quality of life, uphold dignity, and promote self-care.