One day in the summer of 2003 I found myself in a hotel lobby, engaged in an intense conversation with Andrew Solomon. His book on depression, The Noonday Demon, had won the National Book Award. Now he was working on a new project -- about families with children who were so different from their parents that they called into question the very meaning of identity.
Solomon wanted to interview me because our daughter, Becky, has achondroplasia, the most common form of dwarfism. She had survived a rather harrowing infancy during which her too-small airways left her struggling for survival. She needed a tracheotomy, oxygen tanks and home nursing until she was nearly 3 years old.
The year before Solomon and I met I had written a book about Becky and dwarfism called Little People: Learning to See the World Through My Daughter's Eyes. Solomon had been generous enough to blurb it, and it garnered some favorable attention from the Wall Street Journal, NPR and the Boston Globe. Now, at the annual conference of Little People of America (LPA), the country's largest organization for people with dwarfism and their families, Solomon wanted to know what it was like to be the father of a child with profound physical differences.
I hadn't thought much about that conversation until recently, when Solomon's wonderful new book, Far From the Tree: Parents, Children and the Search for Identity, was published. I turned to page 126, and there I was. And my wife, Barbara. Most important, there was Becky -- once again in the pediatric intensive-care unit at Massachusetts General Hospital, once again fighting for her life, once again scaring the hell out of her parents.
As Solomon has done with Far From the Tree, I wrote Little People in order to make a larger point -- that though as a society we claim to value difference, in reality we fear it, keep it at a distance and would stamp it out if given the opportunity. And with genetic testing becoming increasingly cheap and ubiquitous, the day of opportunity is not far off. I researched the history, culture and science of dwarfism. I interviewed people with dwarfism as well as doctors and scientists. I met a young woman who had undergone years of difficult limb-lengthening surgery, and I accompanied her surgeon on his daily rounds -- as well as a surgeon who was himself a dwarf and who adamantly opposed such drastic measures.
If the underlying theme of Little People is the cultural value of difference, Solomon's is what he calls "horizontal identity," which he defines as "an inherent or acquired trait that is foreign to his or her parents" and that therefore leads those who have that trait to seek identity from a peer group rather than from their family. For Americans with dwarfism, that peer group is LPA. Becky has attended a couple of national LPA conferences and many regional events. It is through LPA that she and other young people meet friends with similar conditions and -- just as important -- successful adults with good careers and families of their own.
Later this week we'll leave our home in the Boston area and drive to a small college in southern Vermont, where we'll pick up our daughter and bring her home for Christmas break. It will be an entirely unremarkable experience. Twenty years ago, though, the idea that such an ordinary future awaited her -- and us -- was far more a matter of hope than belief.
Like most adult dwarfs with achondroplasia, Becky is about four feet tall, with exceedingly short arms and legs and a slightly enlarged head. She is a good two feet shorter than her older brother, Tim. She waddles when she walks. None of those differences is incompatible with a normal, happy life. Becky took part in Girl Scouts and high school theatrical productions. At college she has a work-study job and an active social life. She seems well on her way to a successful adulthood.
Becky very clearly has a vertical, family-oriented identity. But it is her horizontal identity that people see when they first meet her.
"I grew up afraid of illness and disability, inclined to avert my gaze from anyone who was too different -- despite all the ways I knew myself to be different," Solomon writes in Far From the Tree. "This book helped me kill that bigoted impulse, which I had always known to be ugly."
By describing that impulse, and by giving it a name, Solomon has done a great service to all of us whose lives have been touched by difference -- and who have learned first-hand the meaning of a "horizontal identity."
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