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Dan and Barbara Kennedy have two
children, Tim and his little sister Becky.
At her birth in 1992, Becky was eight pounds, two ounces and nineteen
and a half inches long. Yet her head
was unusually large, and she was soon diagnosed with achondroplasia, a common
form of dwarfism. This was a surprise
to the Kennedys since the rest of their family is of about average size. Little People is about Dan Kennedy's
experiences as a father and more generally about the history of thought and
debates about dwarfism in the last hundred years or so.
Kennedy's book is reminiscent of
Michael Berube's powerful memoir and reflection on his experiences as a father
of a child with Down syndrome, Life As We Know It (reviewed in Metapsychology July 2002). He mixes together his personal story with an
examination of the social, ethical and philosophical issues raised by
dwarfism. This combination works well
because it deepens the significance of his own experience, and makes the
abstract issues more accessible.
Kennedy is a journalist working in Boston, and he has done a great deal
of investigation for his book. He has
interviewed activists and academics, gone to many meetings of little people,
and he has also thought hard about the ideas.
His writing is literate and compelling, and the book serves as an
excellent introduction to controversies about dwarfism. It also examines many related issues in
disability studies, and so could be used in undergraduate and graduate courses
on disability, at least as an introductory text. There are over 15 pages of notes at the end of the book, giving
references for some of the works referred to in the main text, which can be
helpful for those looking to follow up in researching the topics. Unfortunately, there is no index.
A central question for dwarfism is
whether it should count as a disability.
Some forms of dwarfism are caused by genetic abnormalities or
differences, and some dwarfs are especially prone to a variety of health
problems. Becky's life was seriously
threatened as a baby when she contracted RSV, respiratory syncytial virus,
which made it very difficult for her to breathe. She had an extended stay in hospital and eventually
recovered. Her bodily difference had
made her especially vulnerable to RSV, and so she became seriously ill when
other children it would have been nothing more than a bad cold. She will probably grow to about four feet
high, and her arms are short in proportion to her body, which reduces her
ability to reach all parts of her body.
As she gets older, she will probably lose flexibility, making the problem
worse. Yet many little people do not
want to claim a disability identity, and think that merely being short is not a
problem in itself. It is only a problem
because our society builds buildings in ways that make it more difficult for
little people to get around. Yet
politically it may be helpful to little people to ally themselves with other
people with disabilities, who have been quite successful in their fight to end
discrimination based on physical or mental difference when minimal
accommodation would allow full participation in society by people with
impairments. Kennedy interviews many
people with a stake in these debates, and he sets out the different sides very
clearly. He himself does not take a
strong stand on the issues, but he tends to favor practical concerns over
For example, Kennedy examines the
debates over limb lengthening surgery for dwarves. In this painful and sometimes dangerous procedure, it can be
possible to add about 12 inches to children's height as they grow. So they can go from dwarf to simply being a
fairly short person. Yet many people in
the dwarf community are dead set against this operation, and view it as
entirely unnecessary. Furthermore, they
think it is a sign of a lack of acceptance of dwarfism. Kennedy meets with one of the main surgeons
who performs this surgery, and finds him quite reasonable, presenting him as a
very compassionate doctor. On the other
side of the argument, he emphasizes that often when dwarves want the limb
lengthening procedures, it is when they are teenagers, a time of life when
people are least happy with their bodily appearance. Many people who might have gone to great lengths to change their
physical appearance when adolescents grow up to be glad that they did not make
any permanent changes. He concludes
that he does not think he wants this surgery for his own daughter, although he
is more favorably disposed to the arm-lengthening surgery because this is both
less dangerous and has more everyday benefits for people with achondroplasia.
Similarly, Kennedy's discussion of
genetic testing for conditions associated with dwarfism is thoughtful and
careful. He explains the general
concerns that go with parents wanting to have perfect normal children and the
lack of tolerance of difference that may go with this. He does not go into all the many views that
have been set out by participants in this debate, but he presents a good
balance of ideas.
Little People is both
informative and interesting. It is a
valuable addition to the literature of disability studies. While Kennedy himself is not a dwarf, and he
does not say much about his daughter's view of life, he has been very involved
with Little People of America and he has made and effort to represent a variety
of experiences and opinions concerning dwarfism, so the book will help readers
better understand the experience of being a dwarf.
Link: Dan Kennedy Website
© 2006 Christian Perring. All
Christian Perring, Ph.D., is
Chair of the Philosophy Department at Dowling College, Long Island, and editor
of Metapsychology Online Review. His main research is on
philosophical issues in medicine, psychiatry and psychology.