Brothers and Sisters of Children with Disabilities

1. Brothers and Sisters of Children with Disabilities Disability by Association Presented by Peter Burke Dept of Social Work University of Hull

2. Drawing by my daughter of herself and brother. It made me think of her situation in standing behind her brother’s chair.

3. Sharing experiences: core elements of the child and adult world 300,000 children with disabilities in England and Wales (Joseph Rowntree, www.jrf.org.uk - 2003) 80% have non-disabled siblings, Atkinson & Crawford (1995) All in the Family, NCH Action for Children, London

4. The social interaction of disability by association School experience Home experience Neglect Social Exclusion Sense of being different Morris, J. (2001) That Kind of Life. Scope, London. Tanner, K. & Turner, D. (2000) ‘The Role of Observation in the Assessment of Child Neglect’. Child Abuse Review, 9. 337-348

5. Research Design

6. Model of Reactive Behaviours 1. Negative reaction (high) internal anger 2. Negative reaction (low) external denial 3. Compliant behaviour external guilt 4. Positive reaction (low) internal protection 5. Positive reaction (high) external accepting Lefcourt, H. M. (1975) Locus of Control: Current Trends in Theory and Research, Lawrence Erlbaum, Hillsborough, NJ. Kübler-Ross, E. (1969) On Death and Dying. Tavistock, London

7. High positive reactions Many siblings have made a life-long commitment to care for their disabled brother or sister: They did not show any emotion when speaking of their decision. It seemed a matter of fact situation, one which should be their responsibility and clearly their ‘right’ to follow their own life course is one which professionals might need to encourage. If Jamie’s around when Mum and Dad die he’ll come and live with me. If I’m able there’s no way he’ll go into residential care. I’ve accepted that since I was old enough to think. (Graeme, 16) Burke, P. & Montgomery, S. (2003) Finding a Voice. BASW Expanding Horizons Series, Birmingham.

8. The case ofJane and Richard ( high negative reaction ) Jane, aged 7, and Richard, her 5 year old brother with profound disabilities, live with both parents in a comfortable terraced house within a major residential area of a Northern city. Richard is now attending Jane’s school, and he has special needs and attendants. This appears to have increased her sense of everything centering on Richard’s needs and not her own. At school he had his own entourage - two school helpers and a nursing assistant. Not only staff-help, because when he started all the kids would follow him around - he was special you see (Jane and Richard’s Mother). Jane has kicked Richard in the stomach, knowing his sensitivity in the area, and defaced certificates he has received for his various achievements. She screams and shouts and her performance at school has deteriorated.

9. The case of Harry and brothers (high negative reaction) Harry (age 5 years) lives with his mother, a lone parent, and three older brothers, John (15), James (13) and Douglas (10). Douglas is closest in age to Harry and is the only brother, in the family, who has direct experience of having a brother with disabilities for most of his life . Douglas, like Jane, has problems at school due to attention difficulties and is considered somewhat of a bully in his relationship with other school children, such a reaction possibly due to a degree of confusion within his self-identity (Meadows, 1992:202)

10. The case of Rani and Ahmed (high negative reaction) double oppression Rani is a twelve year old girl who attends a special school, as does her brother, Ahmed, who is nine. Both children live at home with their mother and father. Ahmed is diagnosed with attention deficit hyperactivity disorder (ADHD) Rani started at a local mainstream school at the age of five, but experienced what her parents described as ‘a total ignoring’ by other children. Mother said that as a family they wished to be integrated within the community but after 15 years had little success in their local village community. Rani, who the family consider is ‘perfectly normal’, now has to go to a special school, in their view, due to the stress experienced within the local mainstream one: ‘she could not make any friends’.

11. Over 80 per cent of parents (46) reported that their non-disabled child helped with the caring responsibilities (including play-type activities) of looking after their disabled brother or sister. Over 70 per cent (40) indicated that that having a disabled child brought positive benefits to the family. Some 12 per cent (7) of parents indicated that there were no benefit in having a disabled child and these same parents indicated that they considered that their non-disabled children did not help with caring responsibilities.

12. The case of Daniel and brothers Joe and David (compliant behaviour) Daniel (10) is diagnosed as autistic. He lives with his parents and his brother, Joe (14) and David (18 months). Joe told me that he got into fights with Daniel, but more often this involved ‘fighting-back, as needed’. Joe had learned to tolerate his brother rather than getting on well with him because he had no choice in the matter. Joe told me that he enjoyed attending a siblings group, but freely admitted that he had not kept in contact with any of the other young people that he had met.

13. The case of: Fay and Michael(high positive reaction) Fay is seven and her brother Michael is five and a half years old. At 18 months Michael was diagnosed as having a learning disability. He appears not to notice pain with the consequence that normally ‘painful experiences’ did not warn his of danger. Fay has been frequently upset at school by comments from other children like ‘your brother’s stupid’. However, school friendships are difficult to because she will not tolerate jibes about her brother and will always speak-up for him if he is bullied. Fay recognises that Michael is not able to accept responsibility for himself and consequently he is subject to the protection of others, including herself.

14. The case of Robert and Henry (low positive reaction) Henry is 6 years old and has an older brother, Henry, aged eight. Henry has poor co-ordination, uses a wheelchair, and attends a special school. Henry goes to special school and has not gone to his school, like other children with younger brothers. An added element to this perception of difference is the fact that another boy in his school uses a wheelchair, like Henry’s. Robert explained that Henry should be at his school and be ‘the same’ as the other boys. Yet despite this belief, he says that he has not mentioned it to his mother because she ‘must have her reasons’.

15. The case of Victoria, Jenny & Paul (low positive reaction) Victoria (11 years) lives in a large comfortable terraced house in a small village in East Yorkshire. She is cared for by her mother and shares her home with her sister and brother, Jenny (15) and Paul (13). One problem Paul had with Victoria followed her discovery of a way of wiping out his saved ‘Playstation’ games after he had played for several hours, and her apparent indifference to what she had done. His view of life with Victoria was expressed as follows: Life would be easier without her, but if I had a magic wand I wouldn't make her any different, otherwise she wouldn’t be Victoria. I’d keep her the way she is; otherwise she could end up like Jenny (grinning as he mentioned his older sister’s name)’.

16. The case of Peter and Ian (low negative reaction) Peter is 14 and has a younger disabled brother Ian aged 10 years. Ian goes to a special school for physically disabled young people. Peter attends a sibling support group. Peter seems to be a bit of a loner, a seemingly not uncommon reaction to disability in the family (echoing Joe mentioned earlier), and as he expresses it, he made the decision ‘not see my school friends after school’, thus keeping his home life separate from his school experiences.

17. Thompson (1995) is concerned that young carers are denied their childhood by the nature of their caring responsibilities and stresses their need for support and counseling . The children within our families experience situations beyond the more ‘ordinary’ family experience: exclusion can be avoided by introducing or amplifying networks of formal and informal care. The social context is crucial for the understanding of individual needs and the nature of social interactions. Disability by association shows that non-impaired children are treated as if they have a disability themselves. Thompson, A. (1995) Paradise Lost. Community Care, 25-31 May, 5.

18. Reference for • Brothers and Sisters of Children with Disabilities: Disability by Association • Burke, P. (2003) Brothers and Sisters of Children with Disabilities, Jessica Kingsley, London.