by Michael Berube
Vintage Books, 1996
Review by Christian Perring, Ph.D. on Jul 12th 2002
Life As We Know It is part memoir about
Bérubé's son Jamie who has Down syndrome and part academic discussion of mental
disability, delay, cognitive deficit, and retardation and their role in modern
society. Bérubé is a professor of English, and he is well versed in philosophy,
as well as having learned a great deal through his own personal experience
about medicine, education, and public policy.
The book brings together Jamie's story with a more abstract analysis of
political, ethical, and conceptual issues, creating a powerful synthesis of
ideas. It will be informative for
anyone who wants to know more about Down syndrome and wants to reflect on both
personal and political aspects of parenting a child with Down's.
Jamie was born in September 1991, and the book sets
out his first five years. His brother
Nick is five years older, and is intellectually gifted. Jamie now looks up to Nick and is thrilled
to get his encouragement and approval.
Their parents, Michael and Janet, are highly educated and articulate,
and so they are able to identify problems and solutions and fight for the best
treatment for both children. Life As We Know It includes many stories
about the family, but it is mainly about Jamie and his father. It is not a self-help manual, and it
provides little advice to parents in similar positions. Bérubé is an
intellectual, and he makes no apologies for intellectualizing about his son's
condition and the way the world reacts to it.
Chapter 1 tells the story of Jamie's birth and his
initial health problems in the first weeks of his life, and sets out some of
the science of genetics relevant to Down syndrome. Chapter 2 is about Jamie's continuing health problems once his
parents brought him home; it discusses both problems with health insurance and
the cost of paying for the treatment, and also the choices facing parents in
getting prenatal testing for Down's, the ethics of abortion, and the difficulty
involved in parents doing daily tasks of caregiving for a sick and vulnerable
child. Chapter 3 continues this last
theme, and quickly enters into a discussion of societal definitions of people
with mental and cognitive disorders; Bérubé is especially influenced by the
work of philosopher/historian Michel Foucault, but as a parent he also finds he
needs to retain an optimistic outlook as a counterfoil to Foucault's pessimism.
Bérubé and his wife are very pleased when they find an Israeli physical therapist
who takes an aggressive stance to dealing with Jamie's asymmetrical muscles in
his neck, and Bérubé reflects on how to assess Jamie's disabilities and
milestones of developmental achievement.
These last themes arise again in the next chapter on Jamie's linguistic
abilities; a speech therapist recommends that Jamie learn American Sign
Language as well as spoken English, because of the problems he has in
controlling his voice. Bérubé engages in a discussion of what it is to
understand language, and how children learn the meanings of words; his
experience with Jamie gives him food for thought in contemplating recent
debates in the philosophy of language.
The final main chapter enters into discussion of IQ and education
policy, and the ideological debate behind the implementation of Individuals
with Disabilities Education Act, and proceeds to a more general inquiry into
what kind of treatment people with disabilities are entitled to. An Epilogue discusses the language we use to
refer to people with cognitive deficits and debates over political correctness.
Bérubé ends with the hope that eventually Jamie will be able to represent
himself, but in the meantime it is his job as father to represent his son.
Most of the discussion is very approachable, even when
Bérubé is tackling rather abstract issues.
He is a liberal and an intellectual, and so he articulately defends his
own particular views. Not everyone will
agree with him especially controversial is his view vis-à-vis the abortion
debate that humanity, rather than being an absolute property of an individual,
depends on social recognition (p. 85), and the inevitable implication that a
fetus or baby only has value and rights if society recognizes it as
valuable. But Bérubé has a great talent
for bringing intellectual debate and real life together, and Life As We Know It is one of the best
attempts to do this kind of work.
© 2002 Christian Perring. First Serial Rights.
Christian Perring, Ph.D., is
Chair of the Philosophy Department at Dowling College, Long Island. He is
editor of Metapsychology Online Review. His main research is on
philosophical issues in psychiatry. He is especially interested in exploring
how philosophers can play a greater role in public life, and he is keen to help
foster communication between philosophers, mental health professionals, and the