Recent issues of Community Care have reported on the successes of group activities for children with special needs and for siblings of disabled children.1
But not all children with special needs and not all siblings of disabled children uniformly benefit from group activities. Originally it was noted that living with a disabled brother or sister had an impact on able-bodied siblings. This finding was not necessarily unexpected. But a more extended examination of the interview data with 22 families and more than 30 children showed that able-bodied siblings experienced a phenomenon that can be described as disability by association.
From this sample, one in four – although not disabled for physical or intellectual reasons – considered themselves in some way to be disabled, and mainly as a result of their social experiences at school and at home. The experience of living with disability excluded siblings from many “mainstream activities”. Indeed, the variation between individual children’s experience ranged from highly negative reactions to highly positive and supportive ones, but all found that disability made a significant difference to their lives.
A highly negative reaction to living with a brother who has a disability is illustrated by seven-year-old Jane, who kicked her five-year-old disabled brother Richard in the stomach, defaced his school certificates and was reported to scream and shout at school.
At the time of the research Jane was being considered for a statement as having special educational needs. Her difficulties coincided with her brother attending “her” school, before which she had been considered an average to bright student.
An illustration of a highly positive reaction is represented by the case of Fay, seven, who would not tolerate jibes at her disabled brother, five, who attends the same school. Fay reported incidents to teachers to ensure her brother was protected. A middle-ranged reaction was experienced by a 14-year-old boy, Peter, who explained that he had decided not to see friends after school in order to ensure his home life and school life were separate. Living with a disabled sibling made a difference to the lives of all three siblings, although each reacted in their own individual ways.
It appears to me that children socially construct their own protection system and I suggest they experience disability by association in day-to-day experiences.
Parents who are worn out by caring for their disabled children may not give enough attention to their non-disabled children, and may view a sibling as an available helper, not an independent child. Attention-seeking behaviour in siblings may even appear to emulate a disability within themselves, which is a necessary means to gain the reward of being noticed by adults.
A comprehensive review of the cases examined within the research reflects on the experience of disability by association.2 In doing so I show that disability by association is a social construct that places disability within the self-image of the able-bodied child.
Recognising that a child’s self-perception might be distorted by social experiences will enable practitioners to find ways to help siblings in similar situations. In this research it was found that attending a siblings support group raised the self-esteem of many children, some preferred one-to-one help, but all welcomed some additional attention to their needs.
Peter Burke is lecturer in social work at the School of Nursing, Social Work and Applied Health Studies, the University of Hull.
1 Community Care, 30 October 2003, 27 November 2003
2 Peter Burke, Brothers and Sisters of Disabled Children, Jessica Kingsley, 2003