The experience and wellbeing of parents’ activists in disability advocacy groups on the Maltese islands

Abstract

This study explores the experiences and wellbeing of parents of persons with disabilities who advocate in parent-led groups in the Maltese Islands. Using thematic analysis of six semi-structured interviews with parents active in disability NGOs for the past two years, the findings indicate that self-care is essential for parent advocates, encompassing physical, psychological, spiritual, and social dimensions. The study highlights the need for greater awareness of the benefits of advocacy among families, the importance of delegation, advocacy skills, time management, and addressing volunteer shortages in parent-led groups. While collective advocacy is effective, it can paradoxically create additional barriers such as facing prejudice and adverse reactions that affected their wellbeing and those of their family members with disabilities. The study recommends that NGOs implement annual team-building activities with group counselling, provide advocacy skills training aligned with the social model of disability, and develop a localised toolkit for parent advocates in collaboration with persons with disabilities. More research is needed to ensure the sustainability of NGOs by addressing the scarcity of volunteers. Additionally, exploring alternative solutions to employ individuals in these NGOs without direct state payment is crucial to avoid silencing effects.