Brothers and sisters of children with disabilities: disability by association
Peter Burke, Department of Social Work, University of Hull
Abstract
As a result of interviews with 22 families and over 30 children with disabled brother and sisters, a range of issues affecting the lives of siblings were identified. These include everyday social restrictions they encountered, such as discrimination faced at school and difficulties in establishing their own identity as children within their own families. These experiences can be describes in terms of social exclusion and neglect. Siblings faced tasks as secondary carers for their disabled siblings and most undertook the tasks with good composure reducing, as far as they were concerned, the compounding of stress on their parents. Many positive experiences were reported but the sense of familial neglect in the face of competing demands on parental attentions and the negativity of peer pressure induced through interactive experiences, an overwhelming complexity within their lives that is difficult to understand let, alone, as a child, overcome. This form of experience is described as 'disability by association', when siblings are disorientated by their experience and know not where to turn.
Approximately one in four of the siblings interviewed, in an admittedly small sample, appeared to view themselves as 'disabled'. This is confirmed by attention seeking behaviour, poor under-performance at school and indeed, for some, a kind of mental regression blocking-out the reality of their experience. Siblings appeared to deny their own ability compared with their disabled brothers or sisters, sharing, as they did, a common biological inheritance. This research is not conclusive although the evidence from the qualitative data , gleaned through interview and completed questionnaires, is compelling. Overcoming the oppressions that the mantle of disability places on these children reflects on the inequalities within childhood society and the failure of some families to see beyond the needs of their disabled child. The fact of living with disability highlights the difficulties faced by all disabled people and demonstrates that social and emotional barriers are still imparted within a child's experience of daily life. The need for professional intervention is imperative, and indeed sharing these concerns within a professional venue, may hopefully enable some conclusions to be draw from the research and begin to enable an understanding of disability and some of the many difficulties that have yet to be fully understood.