How a family with two disabled children experiences societal perceptions

Abstract

This study presents a thick description of the life of a Maltese family with two children with disability living in Malta. This research addressed the question of how a family with two disabled children experiences societal perceptions in Malta. In this study, the family consisted of parents whose ages are around the mid-forties, and their two children, Sonia who is seven years old and has a physical disability, and Sam who is five years old and has an intellectual disability. Current trends in disability studies promote emancipatory research approaches, which include allowing the participating family’s voice to be heard. It is in fact this voice that leads the study forward, as the family participants are the experts on their own life. Therefore, the emancipatory disability approach, which is based on the social model, and ethnography, whose philosophy fits in well with the social model, is the conceptual framework used for this study. A variety of data sources was used which enabled me to look into the experiences of the parents with children with disability. These data sources were observation sessions and interviews. The family’s experience of societal perceptions was explored following a case-study design and using open-ended ethnographic interview methods. When analysed, the data generated resulted in a number of themes: the two themes most frequently mentioned were physical accessibility and lack of co-ordination between government and non-government organisations. This lack of organisation results in a fragmented system which is difficult to navigate. Both themes, which manifest barriers, call for a rethinking in the local cultural mind-set. The themes explored are brought together to answer the research question in the conclusion of this study. The conclusion highlights the situation of the family, as well as other similar families, when faced with the challenges and/or barriers created by the Maltese society.