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Elder Care

by Mary McHugh
Paul H Brookes, 1999
Review by Kevin T. Keith on Apr 16th 2004

Special Siblings

Mary McHugh's younger brother, Jack, has a severe cognitive disability secondary to cerebral palsy. Her life has been shaped by her experiences with Jack, first growing up in a household with a "special" child, later as an adult attempting to make her own way while coming to terms with her brother's need for assistance. In Special Siblings: Growing Up with Someone with a Disability, McHugh surveys some issues and difficulties faced by siblings of the disabled. The "special siblings" are both the disabled and non-disabled children in such households, because, as she says, "it's important to point out that we are all special."

The book is intended as an advisory for those with disabled siblings. It identifies important issues such persons face and reports some people's experiences dealing with them. It is organized roughly along the developmental process, with sections for "Childhood," "Adolescence," and "Adulthood"; each section contains chapters devoted to particular issues arising in those stages of life. Each chapter opens with illustrative anecdotes, then a fuller exploration using quotes from various individuals (usually people relating their own experiences as siblings of a disabled person, but occasionally caregivers or researchers), and sometimes data from research studies. It is not an academic treatise; each topic is covered by example rather than discursive explanation (McHugh's and her subjects' stories, collectively, make up the vast majority of the text), and the book reads like a collection of reminiscences, organized thematically, with minimal linking material. The book rarely recommends specific courses of action; more often it expands on the problem through quotes and stories, then points out different aspects of the issue and its possible solutions.

The book is also a personal outlet for the author. Every chapter begins with a story from her life, and intersperses the quotes and data from other sources with further discussion of her experiences; by far the most commonly-heard first-person perspective is her own. The content of the book closely reflects her issues also. Because her brother has a cognitive impairment, mental disabilities heavily predominate; physical disabilities are treated much more cursorily. Mental "disability" is treated in more depth than mental "illness," as well, (though McHugh makes some useful distinctions between the two). Important issues are glossed over, apparently because they didn't happen to arise in Jack's life (among these are responding to disabled siblings' sexual and romantic relationships, managing violent siblings, assisting in raising the children of disabled siblings who become parents, and others). McHugh shares candidly her residual resentment of the difficulties imposed by her brother's condition, and her anger at her parents for their mis-steps in handling it. She writes: "I am still trying to feel love for [Jack], but after a lifetime of wishing he weren't my brother, I still have a long way to go." These passages give the book a great deal of emotional power, but again skew its content too much in the direction of personal therapy for the author, and away from an even-handed survey of issues faced by others.

Organization and writing style are problematical. The sections on childhood and adolescence comprise over half the text, but it is not clear what readers are expected to do with that information: the writing style assumes an audience whose childhoods are far behind them. How the author relates to the audience is similarly obscure: the text sometimes veers into the second person ("You may be angry at your parents for bringing you into this abnormal family in the first place") like a self-help manual, at other times retreats to the third person.

These questions of content, focus, and tone are the book's chief weaknesses – and they are not trivial. However, there is a wealth of useful material included. Of interest are the sections on birth order of the disabled and non-disabled siblings, their relative ages, and changes in social expectations and options for disability care from McHugh's parents' generation to today (advice to "put her in a mental institution and tell [the] other children that she had died" is, one hopes, no longer heard). Also important is material on adolescent resentment and embarrassment, the decision by siblings of the disabled whether or not to have children, and planning for continuance of care after the siblings' parents die. None of these is a cut-and-dried issue, and they are treated, within the limited scope of their respective brief sections, in their complexity.

Special Siblings is not the exhaustive treatment of its topic; it is too anecdotal, too personal, and too unfocused to qualify as a comprehensive treatise. Its use of research data, in particular, is minimal in most places and uncritical where present. However, the book will certainly prove useful to adult siblings of the disabled, both in understanding and working through their experiences in childhood and beyond, and in planning for the life issues that still lie ahead for them and their siblings. Sophisticated adolescents may find it somewhat interesting (especially by way of seeing that there are others out there like them), but it is short on practical advice for them. Children will not be able to use it, but it may help the parents of "special siblings" to understand the tensions in that sibling relationship and find ways to ameliorate them. Professionals may find it a useful resource for their patients, and in understanding the particular feelings and frustrations of their patients who are, or who have, "special siblings." If Special Siblings is not the last word on its topic, it is a more than good-enough beginning.


© 2004 Kevin T. Keith


Kevin T. Keith, M.A., City College, CUNY