On a Saturday morning less than two months from now, I’ll be on my way to southern Vermont. With me will be my wife, Barbara, and our daughter, Rebecca. Our destination will be a college that Becky may attend after she finishes high school next year. During our drive, we’ll pass the exit for the photography school from which our older child, Timothy, is due to graduate the following week. If he’s around, maybe we’ll stop by after our tour. There’s a great Chinese place nearby that he introduced us to last fall.
The empty nest looms.
Our lives are very different compared to the early 1990s, from which much of the emotional energy of this book derives, or even compared to eight years ago, when I was conducting interviews and research, trying to discern meaning in Becky’s dwarfism, meaning in difference, meaning in a culture that celebrates diversity in the abstract but that all too often fears it when confronted with it face to face.
Seventeen years ago, Becky was fighting for her life as she struggled to overcome breathing problems, a consequence of her having been born with achondroplasia, the most common form of dwarfism. Today she is fully recovered — a happy, healthy teenager who performs in school theatrical productions, who takes part in Girl Scouts, and who loves to write feature articles for the school paper and short stories for her own amusement. She is four feet tall, with exceedingly short arms and legs, and she sways from side to side as she walks. Yet her dwarfism, though hardly an inconsequential part of her life, does not define her.
If our lives have changed over the past few decades, so, too, has the way dwarfism is depicted in popular culture. When Becky was a baby, there was the occasional magazine or television success story about a little person making his or her way in the world. More frequently, though, were stories about Hank the Angry, Drunken Dwarf, a sidekick of Howard Stern’s who has since passed away. Or dwarf-tossing, a humiliating and dangerous practice that was actually defended on a national network news program as a matter of personal choice. Or midget wrestling. Or midget porn. (I am using the term midget advisedly. As you will learn, the “M-word” is about as popular among people with dwarfism as the “N-word” is with African-Americans.)
Today, you can’t flip through the cable channels without coming across TLC’s upbeat series of programs on people with dwarfism — Little People, Big World, starring Matt and Amy Roloff, whom I have known for years, and who were interviewed for this book; Little Chocolatiers; and my personal favorite, The Little Couple, whose co-star, Jennifer Arnold, is a pediatrician who was profiled in one of the first magazine stories I read about dwarfism after Becky was born. I’m not sure what it says about our society that we will watch television programs about the ordinary goings-on of people just because they look different from most of us. But I do know that Becky is living at a time when the image of dwarfism is far more positive than it was a generation or two ago.
As I argue in the book, there’s never been a better time to be different, whether you have a disability, are gay or lesbian, or are from a non-European racial or ethnic background. In some respects, I actually underestimated how quickly our culture was changing. When I was writing Little People, for instance, I couldn’t have imagined that we would soon elect an African-American president.
Yet rapid change inspires fear as well. Racism and homophobia remain embedded in our culture. And even as we enjoy watching the Roloffs manage their farm and their family, we applaud the development of genetic-screening tests that could prevent future generations of Roloffs from being born.
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. My original publisher, Rodale, allowed Little People to go out of print several years ago. Fortunately, information technology that was barely imaginable when Becky was born has enabled me to keep it available, via the print-on-demand version you are now reading as well as online. The full text of the book is available for free at http://www.littlepeoplethebook.com, where you can also find photographs, reviews of and feature stories about the book, and essays about dwarfism and its consequences that I have written over the years.
Difference creates community, and by far the most rewarding aspect to having a child with dwarfism has been becoming part of the dwarf community — as interesting and engaging a group of people as I have known. We would not have chosen dwarfism for our daughter. Yet we are grateful for the friendships we have all made through Little People of America, the leading organization for people with dwarfism and their families.
Several weeks ago we attended the twice-yearly weekend conference of LPA’s District One, a smaller version of the national conference that I describe in Chapter Thirteen. Becky had a wonderful time swimming and dancing, while Barbara and I caught up with friends we’ve known for years — folks with dwarfism and average-size family members, walking through the hallways and riding on electric scooters. As you will see, Little People is not just our story, but theirs as well.