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Daughter's dwarfism propels writer on 'unexpected journey'

("Little People: Learning to See the World Through My Daughter's Eyes" By Dan Kennedy, Rodale, 288 pp.; $24.95.)

Right now dwarfs are, well, big. It seems you can catch documentaries about dwarfs getting married, going to college, and simply going about their ordinary lives on everything from the Discovery Channel to MTV to Fox's reality show "The Littlest Groom." But it is Peter Dinklage's role as Finbar McBride in the highly acclaimed film "The Station Agent" that has excited the dwarf community. The film offers the fullest portrayal yet of a dwarf as complex and attractive -- a far cry from Munchkin Land and Mini-Me.

So Dan Kennedy's book, "Little People," seems well timed. Because Kennedy, as the father of an 11-year-old achondroplastic dwarf, is a card-carrying member of the dwarf community, his book doesn't have the voyeuristic feel that even well-intentioned television documentaries do. Kennedy's take on a topic so personal is remarkably thorough and unflinching.

Of course, dwarfs are nothing new; dwarfism has been around since the dawn of time and appears throughout nature. There are dwarf plants, trees, animals, and people. Dwarf children appear once in every 30,000 to 60,000 births, making it much rarer than, for example, Down syndrome, another genetic anomaly that occurs once in every 600-800 births.

With fewer than 50,000 dwarfs estimated to be living in the United States, Kennedy understands how different they look and why they often draw stares. He knows that most people don't understand that "midget" is an unacceptable term to describe short-statured people, and that "dwarf" or "little person" is OK. Kennedy invites readers to take a good look at dwarfism, its history, challenges, and future in a world where genetic advances are changing everything.

Kennedy's an ideal guide. Besides being a devoted father to his daughter, Becky, and an average-sized son, Tim, Kennedy is a senior writer at the Boston Phoenix. He takes us on a journey that is both singular and universal for any parent of a child who is "different."

When Kennedy's daughter was born in 1992, it didn't take long for doctors to diagnose her achondroplasia, the most common form of 200 types of dwarfism. Kennedy recalls that at birth her disproportionate head size also raised concerns about brain damage and that he and his wife, Barbara, were profoundly relieved when that was ruled out.

Since then, Kennedy has been on an "unexpected journey." He was determined to find out why Becky was different and he wanted the answer to be "positive, uplifting and life-affirming." As the parent of a dwarf child myself, I know how he feels.

Unfortunately, the answers aren't always easy or uplifting.

Kennedy skillfully cobbles together a history of dwarfs from prehistoric man to ancient Egypt, turn-of-the-century sideshows, and atrocities against dwarfs during World War II. He also chronicles the rise of Little People of America, the largest dwarf organization in the US. He alternates these chapters with the story of Becky and her dwarf-related health problems. At times, Kennedy's somewhat detached reportage could have been warmed with the voice of his wife, whom he credits as being the emotional center of the family.

Kennedy's history of dwarfs in America since the mid-20th century and his look into the future is provocative and chilling. Just as dwarfs are gaining momentum as a minority group, doing a credible job of organizing and lobbying, they may be on the verge of extinction.

A genetic screening for achondroplasia in fetuses is available, but not routinely offered, except to dwarfs, who have a 50 percent chance of passing it on. Kennedy predicts it won't be long before the screening will be available along with tests for other genetic defects, and dwarfism may become extinct or nearly so in a society that doesn't celebrate diversity as much as fear it. For Kennedy and other parents who never would have chosen dwarfism for their children, the prospect of eliminating it like a scourge is troubling.

Limb lengthening is another hot-button issue. Surgery is available to some and can add nearly a foot to a person's height. It is painful, dangerous, and still in its early stages. And much like the cochlear implant controversy within the deaf community, debate about the surgery is intense in the dwarf community: Is it a blessing, a practical cure of the physical and social challenges all dwarfs face, or is it a curse, an affirmation of the notion that dwarfs are defective, inferior, and in need of correction? Kennedy interviews dwarfs who have undergone the surgery and others who wouldn't dream of it.

Kennedy aptly terms dwarfism "a different kind of disability." If your child had a heart defect that impeded his activity level, you wouldn't hesitate to have surgery that would make his life easier. But it's more complicated for dwarfs. Like many parents of dwarf children, Kennedy hopes Becky doesn't choose limb lengthening to fulfill society's definition of "normal." But then again, if you're 5 feet 2 inches instead of 4 feet 2 inches, you can reach an ATM machine without a stool and drive a car without pedal extensions. And so it goes.

Kennedy demonstrates that dwarfs are not a homogeneous minority group, but a complex community, just like any other randomly chosen segment of the population.

After 10 years of thinking, researching, and interviewing, Kennedy knows what he wants for his only daughter. He wants her to be comfortable in her own skin, for her to act, rather than be acted upon, to be valued for her contributions and achievements as a person, not as a disabled person, and for her to be happy with who she is. And what parent doesn't want that?

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