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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,