One morning last week, I spent an hour talking about dwarfism with 50 or so fourth-graders at a private school in the Boston suburbs. They had just finished reading Lisa Graff's The Thing About Georgie, a charming novel about a dwarf boy trying to come to terms with his identity. One of their teachers recalled that I'd written a book about raising our daughter, Becky, who, like Georgie, has achondroplasia, the most common form of dwarfism.
The kids' questions were smart and direct. How does Becky reach the light switches? Will she be able to drive? Does she go to a regular school? Do people stare? Somehow, though, it didn't occur to any of them to ask whether Becky would choose to be taller if she could. Perhaps that was because Graff's depiction of Georgie is so well-rounded - tough, honest and matter-of-fact. As with Becky, being a dwarf is just a part of who Georgie is. Who would want to change such a thing?
Which brings me to the latest depiction of dwarfism by the news media. This past Sunday, the Washington Post Magazine published a story about a teenage girl with dwarfism named Caitlin Schroeder, who's undergone dangerous, painful surgery to add nearly six inches to her height. The story, written by Caitlin Gibson and photographed by Rebecca Drobis, is extraordinarily well-done, sensitive, thorough and full of nuance. The Post deserves considerable praise.
Yet, at more than 8,000 words, illustrated by 15 pictures, the package may be the most extensive look at dwarfism ever provided by the Post, or, for that matter, any major American newspaper. And it is, at root, dedicated to the proposition that dwarfism is wrong, and is something to be changed.
Back in August 2002, I spent some time with Caitlin Schroeder's surgeon, Dr Dror Paley, making the rounds with him at Sinai Hospital in Baltimore and interviewing him afterwards at a nondescript Middle Eastern restaurant tucked inside a strip mall. I also interviewed Paley's best-known patient, Gillian Mueller, then 27, the first American with dwarfism to undergo the procedure. (My book, Little People, is now out of print, but the full text is online.)
Mueller had come through her ordeal beautifully. At nearly five-foot-two, you would not know that she was a dwarf; the only giveaways were her small hands and slightly awkward gait. But elongated limb-lengthening, or ELL, as it is called, is gruesome business. The bones of the legs and arms are broken, and metal pins mounted to cylindrical frames are inserted from the outside. The patient turns the pins to separate the bones by about a millimeter a day. Though Caitlin Schroeder opted to stop at a little less than six inches, dwarfs can, and have, added a foot or more to their height.
It can be dangerous, too - infections and nerve damage are not uncommon. Death is a possibility. Paley is a gifted, experienced surgeon. But as Dr Michael Ain, an orthopedic surgeon at Johns Hopkins Hospital who has achondroplasia, told me, "The complication rate is incredibly high. They've gotten better, but it's still amazingly high". Why take the risk?
The reason is that despite the lip service we pay to diversity, we all have a vision of the perfect child, and are willing to do whatever it takes to make that vision a reality. No one wants to be the parent whose kid gets stared at, pointed at, laughed at. I'm not necessarily talking about Caitlin Schroeder and her family, whose reasons seem sound and well-thought-out; I've got a broader cultural critique in mind.
"Our society is designed for easier accessibility around the height of about five feet tall, maybe even taller than that," Paley told me six years ago, talking about door knobs, gas-pump handles, even coat hangers as reasons to consider major, life-altering surgery.
He was right, at least from inside his own view of reality. But in talking about dwarfism as a socially constructed disability, Paley left no room for the possibility that society could change - is changing, for that matter - and that, ultimately, that's better for all of us than attempting to fix people who aren't broken.
We are under no illusions about the challenges Becky faces. She's four-foot-one, and, at 16-years-old, is about as tall as she's going to get. Her arms are disproportionately short. She waddles. But though her genome is imperfect, she, Becky, is perfect just the way she is.
For us, and for her, stools, pedal-extenders for driving and healthy self-esteem are far superior to months of surgery and agonising rehab, not to mention the uncertain prospects for a good outcome. The one time we showed Becky a television news story about limb-lengthening, she was fascinated, but she made it clear that she wanted nothing to do with it. Then again, unlike Caitlin Schroeder, Becky has been exposed to people with dwarfism, adults and kids, from the time she was a toddler, and she knows first-hand the good lives they lead. To Becky, Matt and Amy Roloff are not the stars of the reality show Little People, Big World - they're ordinary people with whom she had her picture taken some years back, when Matt was president of Little People of America and we were attending the annual conference.
As impressive as the Post's story is, what's missing is the sense of dwarfism as another type of normal. Maybe we're not there as a culture - yet. But we're moving in that direction. Little by little, you might say.
