Welcome to my life a journey through the life of a child with a physical disability in Malta

Abstract

The aim of this study is to discover the world of a child having a physical disability in Malta. The study’s main research question is therefore: ‘How does a child, aged between five and seven years, having a physical disability in Malta, make sense of the world around him?’ Present literature tends to focus on studies conducted on rather than with or by children (Kay & Tisdall, 2012). However, given that the current shifts in childhood and disability studies promote the use of emancipatory and participatory research approaches, this study places the child’s voice at the forefront. This is done by allowing the child to lead the route of the research project himself. The study uses the Mosaic Approach, designed by Clark and Moss (2005) as its methodology. The Mosaic Approach uses a combination of both traditional and participatory techniques to generate data that creates a living picture of the child’s life (Clark & Moss, 2011). The data generated by the child is then utilised to design interview guidelines used to discover the perceptions of the adults involved in the child’s life. In this study, the research participant was a seven year-old boy having Spina Bifida and the data collection phase lasted for approximately two months. The data collected was then analysed and discussed using a Social Model of Disability as a theoretical framework. The analysis of the data generated identified two main themes that needed to be discussed in further detail, namely physical accessibility and identity. Physical accessibility was the theme which emerged most frequently in the tools used by the child, and highlights the need for Universal Design as a right for all. The theme of identity brought out clear discrepancies between the perceptions of the child and of the adults involved. The child identifies himself as equal to his peers and views his impairment and need to use the wheelchair as a necessary extension of one’s self (Egilson, 2014). The presence of the impairment, on the other hand, taints every aspect of how the professionals view the child. For the adults, it is the need of normalisation and walking that should be the main focus of the child’s life. Furthermore, the educational professionals expect academic excellence as a way of compensating for the physical impairment. The study concludes by bringing together the themes explored so as to answer the given research question. It is also of note, that the findings of the study were used to design a booklet that can be disseminated to schools, NGOs and other institutions that work with disabled children.