Peter Burke is a senior lecturer in social work at the University of Hull, England. He has written extensively on the siblings and families of disabled children, mostly from the vantage point of recognizing their rights and providing them with the necessary social and government support. Peter Burke spoke also from personal experience as his own son is confined to a wheelchair.
The subject was of importance since most children we see are disabled by their symptoms, temporarily or chronically, whether they are of a psychological nature, such as an anxiety disorder, or a neuro-developmental condition, such as autism. A number of children also have medical and neurological conditions that impact on family life. It was therefore with some anticipatory excitement that I started to read this book with such a broad promising title.
In 10 chapters, the author presented his theory clearly and extensively (if not repetitively): “disability is a family matter when one member is disabled” (p. 129). He introduced the original concept of “disability by association” to refer to the impact of a disabled child on healthy siblings and the rest of the book is an exemplification of this concept in all spheres of the sibling’s school, family and social life. The purpose of the book was “to explain in more detail the experiences of siblings, to show whether this experience is due to difference, disability or discrimination” and better understand it “should it infringe against the fundamental rights of the child” (p. 16).
Chapter 2 described a research design based on the interviews of 22 families (24 children) that yielded qualitative and quantitative data supporting the construction of a typology of reactive behaviors. Four categories were described depending on the quality and intensity of the sibling’s reaction: High Negative, Low Negative, High Positive and Low Positive. Clinical examples of these types, followed by the author’s comments, were examined throughout the book.
These reactions invited a further understanding of resilience, vulnerability, locus of control, systemic family dynamics, levels of development, socio-cultural factors, availability of social support and individual personality variables. While all these topics were mentioned, their superficial almost dismissive treatment in the book left this reader somewhat frustrated. Chapter 5, entitled “Children as Young Carers” was probably the most insightful. It introduced the notion of “young carers”, recognized by the Carers National Association, to describe the role of the healthy sibling (who was a sister in most cases) in relation to the disabled child. The experience of the sibling could be a positive one that gave value and meaning to the relationships within the family without overwhelming the sibling or depriving him or her of their individual needs. Healthy siblings support groups were advocated and described in detail in chapter 7.
The main emphasis of the author was on the preservation of the rights and needs, not only of the disabled child but also of siblings, and on the importance for parents, public policies and institutions to recognize that. The social and legal aspects as they stand in Great Britain were widely covered. Particularly interesting points in the book were:
The emphasis is on the family and not the disability
The disability is given a social definition and not exclusively a medical one
Non-disabled siblings suffer from “disability by association” and their needs and rights must be recognized
We should allow children to express their needs and not presume that we know them
Disability may have both negative and positive effects on a family.
Finally it is important to mention that there was an extensive bibliography at the end of the book as well as a complete author and subject index.
Unfortunately the almost exclusive emphasis on the child’s rights ran the risk of seeing the issue as purely external. It gave little place to the exploration of the immensely rich, complex, and not less important, inner world of the healthy sibling as a family member who also needed parental attention; who develops, adjusts, reacts and readjusts to the presence of a disabled brother or sister.