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Achondroplasia, the Most Common Form of Dwarfism

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Achondroplasia, the Most Common Form of Dwarfism Little People by Dan Kennedy: Table of Contents Home Little People A Father Reflects on His Daughter's Dwarfism -- and What It Means to Be Different For my parents, the original Dan and Barbara Kennedy, who died much too young. View a Flickr They would have loved their grandchildren. slideshow of photos from the book And their grandchildren would have loved them. Table of Contents Little People: A Introduction to the Online Edition Father Reflects on His Daughter's Chapter One Dwarfism -- and An Unexpected Journey What It Means to Be Different is Chapter Two copyright © 2003 and 2007 by Dan Kennedy. Life Saving Chapter Three Just Like Tom Thumb's Blues Little People is licensed under a Chapter Four Creative Commons The Valley of the Shadow of Death Attribution- Noncommercial- Chapter Five Share Alike 3.0 Chaos Theory License. Some rights Chapter Six reserved. You must attribute this work to A Different Kind of Disability Little People (with Chapter Seven link). For more information, please On Her Own Two Feet contact the author. Chapter Eight Stereotypes, Stigma, and Identity Chapter Nine The Bone Machine Chapter Ten The Storm Before the Calm http://www.littlepeoplethebook.com/lp_contents.html (1 of 2) [8/18/2009 9:00:02 AM] Little People by Dan Kennedy: Table of Contents Chapter Eleven Of Drunks and Divas Chapter Twelve The New Eugenics Chapter Thirteen A Place of Her Own Acknowledgments Notes on Sources http://www.littlepeoplethebook.com/lp_contents.html (2 of 2) [8/18/2009 9:00:02 AM] Introduction to the Internet Edition Contents | Chapter One > Little People INTRODUCTION TO THE ONLINE EDITION in late 2000, when I wrote the proposal for what would eventually become this book, it never occurred to me that one day dwarfism would become a hot topic. Yet as I write this introduction, nearly seven years down the road, people with dwarfism suddenly find themselves in fashion. It is a strange and startling turn of events. Perhaps the most visible symbol is the TLC television series Little People, Big World, a reality show starring the dwarf couple Matt and Amy Roloff and their four kids. This, too, I find rather startling. Matt is a former president of Little People of America, and we worked together for several years when I was the volunteer editor of the organization's website, LPA Online. I interviewed Matt and Amy for this book, and Amy once gave me some advice on finding a clarinet that would be short enough for our daughter to play. I could not have imagined that the Roloffs would be transformed into television stars. And the Roloffs are only the most visible manifestation of this trend. Because pop culture is so important in shaping our perception of reality, it's not surprising that our changing http://www.littlepeoplethebook.com/lp_intro.html (1 of 4) [8/18/2009 9:01:33 AM] Introduction to the Internet Edition attitudes toward dwarfism are reflected in the entertainment business. Yes, there are still plenty of stereotyped roles for dwarfs, from Mini-Me to Mini-KISS. But the actor Peter Dinklage and the actress Meredith Eaton, to name the two most prominent examples, have shown that audiences are willing to accept people with dwarfism as filling the same kinds of roles that were formerly reserved for average-size performers. Yet if dwarfism is more accepted than it has been in the past, its rarity is likely to ensure that people with dwarfism will never quite be considered mainstream. Which brings me back to the beginning--with the birth of our daughter, Rebecca Elizabeth Kennedy, on August 29, 1992. Becky, as you will learn, has achondroplasia, the most common form of dwarfism. It has shaped her life in ways that are both profound (the respiratory virus she caught when she was five months old was life-threatening mainly because of dwarfism-related complications) and subtle (her attention-deficit disorder may be related to her slight hearing loss, a common consequence of achondroplasia). From its inception, this book had two intended audiences: families affected by dwarfism and other disabilities, whom I hoped could learn from our experiences; and a wider readership that might be interested in the history, culture, and science of a rare and little-understood condition. Unfortunately, my publisher, Rodale, allowed Little People to go out of print within the past couple of years. I hope this free Internet edition http://www.littlepeoplethebook.com/lp_intro.html (2 of 4) [8/18/2009 9:01:33 AM] Introduction to the Internet Edition might spark enough interest in the book that it will lead to some enterprising publisher's wanting to bring out a paperback edition. Whether that happens or not, at least the book will be available once again. I have made a slight change to the title. Originally Little People: Learning to See the World Through My Daughter's Eyes, I have renamed it Little People: A Father Reflects on His Daughter's Dwarfism--and What It Means to Be Different. Though more unwieldy, it better reflects what the book is about and what I hope readers will take from it. Other than that, the book is virtually unchanged. When I finished Little People in the spring of 2003, Becky was just ten years old, finishing up the fourth grade. Today she is a happy, healthy almost-fifteen-year-old, getting ready to begin high school this fall. She's a Girl Scout; she acts in school plays; she took part in her eighth-grade class trip to Washington, a trip I was lucky enough to help chaperone; and she is such an accomplished young writer that she won an award in a Harry Potter essay contest sponsored by a local bookstore. She's doing incredibly well-- as well as we ever could have dreamed during those dark days of 1993, when our home was a blur of visiting nurses, beeping monitors, and whooshing oxygen tanks. Yet Becky's life will continue to be shaped by the fact that, at four feet tall, she is already about as tall as she'll ever be; that her arms and legs are http://www.littlepeoplethebook.com/lp_intro.html (3 of 4) [8/18/2009 9:01:33 AM] Introduction to the Internet Edition impossibly short; that she sways back and forth when she walks down the street. There's never been a better time to be different; but difference is still something we'd rather keep at a distance if we can. It's one thing to get to know the Roloff family: after all, they're safely ensconced on the other side of the screen. It's quite another to grant my daughter the same respect and opportunities as anyone else. It's a difficult challenge, and it's one she'll face for the rest of her life. Dan Kennedy Danvers, Massachusetts July 2007 Contents | Chapter One > http://www.littlepeoplethebook.com/lp_intro.html (4 of 4) [8/18/2009 9:01:33 AM] Little People < Introduction | Contents | Chapter Two > Little People CHAPTER ONE An Unexpected Journey from almost the moment we were told that our beautiful new daughter was a dwarf, I've been on something of a quest--a quest to find meaning and purpose in Becky's having a life-altering genetic difference. I don't want to suggest that I've been looking for meaning in her life. That's a given. I've always believed that she has the same potential, the same opportunities, the same chance to succeed or fail, to be happy or sad, as anyone else. But I wanted more. I wanted to know why she was different--or, to be more accurate, why her particular difference was so much more obvious than those that affect most of us. And I wanted the answer to that question to be positive, uplifting, life-affirming. Maybe it's a function of fatherhood, of the ever- so-slight distancing from family life that is imposed on men by biology and social conditioning. For my wife, Barbara, who's more focused on Becky's immediate needs, such questions of meaning are a waste of time and energy. She is who she is. But for me, forever part participant, part observer, the search for meaning is central. My compass is the idea of diversity, of the belief http://www.littlepeoplethebook.com/lp_chap01.html (1 of 21) [8/18/2009 9:01:31 AM] Little People that human variation is in and of itself a positive good, and that, though dwarfism will surely cause Becky problems, there are beneficial aspects to it as well. Greater empathy. Strength of character. Even service to humanity: she could be carrying genes whose purpose is unclear at the moment but that someday might prove beneficial. But is that really an honest way of looking at Becky's dwarfism? Or am I just kidding myself, rationalizing, trying to create a comforting fantasy out of a complicated reality? By now you'd think I would know better. After all, Becky is my only daughter, someone I've looked at, admired, and worried over every day of her life. You'd think it wouldn't require the puzzled reaction of strangers, of the outside world, of a culture that simultaneously celebrates and fears diversity, to pull me out of my reverie and force me to focus on the facts of the matter: That at the age of ten she is no taller than an average five-year-old. That her head is already much bigger than her older brother's, with a heavy, prominent forehead.
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