Sibling disability : growing up with disabled siblings

Abstract

I am of the conviction that all life experiences leave lasting impressions on each individual. Some experiences are more profound and consequently have longer lasting and significant effects. I believe that living with a disabled sibling is one such life experience. The issue of cause and effect of disability is the axis around which revolves this research project. Down with charity, forward with rights is the starting point and main focus of this research. Siblings of disabled persons are as much victims of social injustice as disabled persons themselves. Amongst my references I have made some comparison with a research project carried out in 1995 by SCOPE in the UK, that together with the findings of this project clearly shows what the effects of disability on siblings of disabled persons are. From my readings I quoted various passages I feel succinctly bring out in words human feeling and emotion. I wanted to share with the readers the beauty of the authors' ability to articulate these unique feelings. The selected quotations are the result of the thinking minds of individuals who also have the ability to understand human emotion. The research was conducted among persons who had lived for most of their childhood with the experience of disability in the family. The common factor that bound them was the disability of their sibling. I wanted to explore further what it meant for these people to be a part of that element of society (approximately 10% of population in Malta is disabled, according to a W.H.O. rule of thumb). They came from families, which like mine had parents who felt cheated out of a major life experience, that of enjoying the birth of a child without the worries of disability. I wanted to understand if the sense of bewilderment, and fear this major experience had on me was shared by others in similar situations to mine. I was six years old when my brother was born. He was born with intellectual and physical disability and this experience, for me, like the feelings shared by the surviving soldiers of any war seemed to me to be beyond comprehension for those who did not share this experience. Briefly, this unique experience had an isolating effect on me. I have learned valuable lessons about disability and its effects. During this research I have gone through a process of (to use the word coined by Paulo Freire) 'conscientisation'. I have at the very least understood that having non-disabled offspring is not a human right, but a privilege. I understand better that now that it is unrealistic, though human, to 'expect' perfect offspring every time.