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‘Sibs’ and Disability

Siblings: Brothers and sisters of children with disability
by Kate Strohm (Wakefield, $27.50)
Reviewed by Nikki Slade Robinson

Siblings cover.3.inddIt’s not unusual for the subject of disability to appear in the media, or to be a topic for discussion. Generally the focus is on issues directly impacting disabled people themselves or, less often, the family member (especially parents) in the primary caregiving role. However there is another side to disability that isn’t often covered: siblings of disabled people – or ‘sibs’ as they are referred to in this book.

Australian Kate Strohm’s book ‘Siblings’ opens the door to the ‘sib’ world. Strohm is an experienced health professional, journalist – and sib. She speaks from personal experience: her older sister had cerebral palsy. ‘[As a child] I was incapable of understanding, let alone expressing, the effect of growing up with my sister.’ She goes on to say ‘I had made a decision not to ‘make waves’… I needed to be perfect but on another level I felt guilty about all the things I could do … but my sister couldn’t.’ Out of her journey to come to terms with being a sib, came the establishment of the organisation ‘Siblings Australia’, and of course, this book.

Strohm devotes the first two chapters to outlining her own experiences, before bringing in a wide range of anecdotes from other sibs: ‘None of the family images I saw in the media showed the reality of life in my house…’, ‘Some people assume [sib’s disabled brother] is just a badly behaved child … this does get me wound up…’ Sibs talk of their conflicting emotions. Of feeling isolated from the family, and at the same time feeling responsible for the functioning of the family. Feeling anger towards their disabled sibling, but also love for them. Feeling pressure to behave more as an adult, but wanting to be just a child.

Each chapter focuses on one area, and ends with a summary and suggested strategies. Topics covered include managing future sib issues that may arise: who will take on the caregiver/decision-making role when that task becomes too demanding for ageing parent-caregivers? Is it OK to be a sibling who opts to take on that responsibility? Is it OK to be a sibling who instead distances themselves from the situation, choosing to live their own life independently of caring for their disabled sibling? There is also a chapter talking to parents of sibs, about issues such as supporting the sib, for example sending sibs to the same school vs different schools. Grief is another angle explored. ‘I wish my parents would acknowledge how sad it is for me to watch my friends who have ‘normal’ sibs…’ Finally there is a list of types of support systems and how best to utilise them. The organisation ‘Siblings Australia’ is also outlined.

I would recommend this book to parents and extended family who have a combination of disabled (or chronically ill) children and ‘normal’ children. Even if everything is running smoothly, it may make families aware of potential ‘under the surface’ feelings that could arise at some stage. I think sibs in particular who have found their individual journey challenging would most likely identify with many of the sentiments voiced in this book. It may help to clarify why a sib has the range of feelings that they do. Practitioners and teachers may also find it builds a useful understanding of this area. It is not a biography, but a useful tool in the sib world.

Siblings has been published in the UK, USA and translated into Korean.