Table of Contents
| Chapter 1 | An Unexpected Journey | 3 |
| Chapter 2 | Life Saving | 21 |
| Chapter 3 | Just Like Tom Thumb's Blues | 44 |
| Chapter 4 | The Valley of the Shadow of Death | 65 |
| Chapter 5 | Chaos Theory | 87 |
| Chapter 6 | A Different Kind of Disability | 106 |
| Chapter 7 | On Her Own Two Feet | 127 |
| Chapter 8 | Stereotypes, Stigma, and Identity | 145 |
| Chapter 9 | The Bone Machine | 168 |
| Chapter 10 | The Storm Before the Calm | 194 |
| Chapter 11 | Of Drunks and Divas | 213 |
| Chapter 12 | The New Eugenics | 232 |
| Chapter 13 | A Place of Her Own | 251 |
| Ackowledgments | 278 |
| Notes | 281 |
Read an Excerpt
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 its 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 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. That her arms and legs are impossibly short, that her butt sticks out, and that she sways back and forth, waddling, when she walks. That she is a dwarf not a poster child for some abstract ideal of diversity.
Not that I ever lose sight of this, exactly. In some ways, the realities of Becky's dwarfism are always with me. Every day I think about the dwarfism-related breathing complications that nearly killed her when she was a baby and that held sway over her first three years. And I know that dwarfism continues to alter her life in ways both large and small -- from the slight hearing loss that makes it difficult for her to learn, to the miniature clarinet that she plays because she can't reach the bottom keys on a standard-size instrument. But these are side effects, consequences of her dwarfism, not dwarfism itself. To strangers, she is -- as a physician's article on dwarfism that I once read so charmingly put it -- a funny-looking kid. To us, though, her dwarfism has little to do with how she looks and everything to do with the ways it has changed -- not diminished -- her life, and ours.
Her learning disability makes it hard for her to understand what she reads, but she is brimming with empathy for others. Her tastes in television shows, movies, and computer games lean toward those of a much younger child, yet she has such a sense of responsibility that she will do her chores and her homework without having to be told. Her size often relegates her to playing with kids half her age, yet she is so outgoing with adults that she thinks nothing of picking up the phone and pitching Girl Scout cookies to friends of ours whom she's only met a few times. These are tangible signs of who she is, of a personality and an identity shaped partly by her dwarfism, mostly because no two kids are alike. The labeling -- the idea that she is a dwarf, and that's all she is; that her individuality is subservient to how differently she happens to be put together -- well, that's what I often lose sight of. Except on those occasions when others remind me.
On Labor Day weekend in 2002, right after Becky's tenth birthday, I took her to her favorite amusement park, a place in New Hampshire called Story Land, near Mount Washington. It was a rare father-daughter day; my son, Tim, had gone camping with friends; Barbara stayed home. As with the TV shows and movies that Becky watches, Story Land is geared mainly for children several years younger than she. But the reason she likes Story Land more than, say, Six Flags is strictly practical: she is just tall enough to be allowed on every ride.
I resolved to pay attention on this cool, sunny Sunday -- to stand aside as much as I could and take in the scene. What I saw was a revelation -- not that I should have been surprised. People were staring. There was a little pointing -- not much -- and some long, incredulous looks. Shuffling through the slow-moving lines for the more popular rides, I noticed people looking at Becky, whispering, wondering. As I was waiting to order lunch, a woman came up to me and asked how old Becky was. Now, I've gotten those questions before, and normally I suggest that the person ask Becky herself. Many adult dwarfs say there's a common assumption that because they're short, they must be mentally disabled as well. To counter that, I like to nudge people into engaging with Becky, to experience her outgoing personality and her wit. This time, though, Becky had found a couple of kids to play with, and they were running in and out of a mock jail with rubber bars, shouting and laughing. So I told the woman that Becky was ten, and waited for the look of confusion, followed by enlightenment, that invariably follows. She then asked me the politically correct term for -- well, you know. I should have replied "Becky", but my tongue ran ahead of my brain. "'Dwarf' is fine," I said. She seemed satisfied and walked away.
Later I thought, What an odd encounter. Not unpleasant, mind you. The woman had been friendly and inquisitive, and there was nothing about her demeanor to suggest that she thought Becky was to be pitied or looked down upon. Still, her boldness in coming up to a perfect stranger and asking why his daughter was -- well, a funny-looking kid -- communicated the unspoken message that Becky is public property, and that her parents are obliged to explain her to the world. And I realized that obligation would eventually have to be taken on by Becky herself.
I've heard dwarf adults say that, from childhood on, they've been treated as if they're always on display, never anonymous, never able to blend into the crowd. I once heard a woman -- an attractive thirty-nine-old mother of four who happens to be four-foot-two -- lament that she can't even get out of the mall without fielding questions about what it's like to be a dwarf.
Whenever Becky and I go about our business near our home in Danvers, a suburb on Boston's North Shore, people -- kids and adults alike -- are always stopping, rolling down their car windows, waving, and saying, "Hi, Becky!" Because of her hearing problems, compounded by a certain congenital obliviousness, I sometimes have to give her a nudge before she'll wave back. And at least half the time she can't tell me the names of the people who've just greeted her. They know her; she doesn't know them. They're anonymous; she's not. They can choose whether to wave or not, to say hello or not, to drive on by or not. But she's expected to be polite and friendly at all times, to acknowledge the presence of others because they have chosen to acknowledge hers.
I have come to understand that Becky must learn to be an ambassador's visiting dignitary from the Land of Dwarfism, always upbeat, always polite, always on. It may not be fair. It may not even be possible. But it's there, all the time, tied up in our cultural fascination with difference, with otherness. Dwarfism, in effect, functions as a metaphor for that fascination, inspiring laughter, fear, revulsion, condescension -- but never the sort of half-conscious non-reaction we normally experience when encountering ordinary people going about their ordinary lives. Dwarfs, too, are ordinary people leading, for the most part, ordinary lives. Yet they invariably provoke an extraordinary reaction.
This book tells Becky's story. But it also tells my story, a father's story -- and that of a people, a race even, whose members are no different from anyone else except for the way they look, and yet whose difference has cast them in the role of perpetual outsiders. Above all, it is the story of my quest to find meaning in that difference.
Reprinted from Little People: Learning to See the World through My Daughter's Eyes by Dan Kennedy © 2003 by Dan Kennedy. Permission granted by Rodale, Inc., Emmaus, PA 18098.
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