You see, this is no ordinary dance. It's taking place at the annual conference of Little People of America (LPA), the country's largest organization of dwarfs and their families. I'm looking right past the teenagers and twentysomethings who are shimmying the night away at the Marriott Downtown. I'm looking into the future. And I'm as ambivalent about what I'm seeing as the father of any pre-teenage girl would be.
Our daughter, Rebecca, who turns 10 next month, was born with achondroplasia, a genetic variation that is the most common form of dwarfism. Unlike her 11-year-old brother, Timothy, who's well on the way to being a six-footer, Becky is only three feet six inches tall. Most likely she'll grow only another half-dozen inches or so. She's not with me in Salt Lake; I'm here alone, researching a book on the culture of dwarfism. But next year's conference will be near my home in the Boston area, and she'll certainly go to that. And in a few years, I have no doubt that she'll be an eager participant in the scene that's playing out in front of me.
Not that there's anything particularly untoward going on. But when you're about four feet tall, as most of these dancers are, with disproportionately short arms and legs, and you don't move as quickly or as gracefully as your average-size (to use the politically correct term) friends back home, the LPA dances take on a certain -- shall we say -- intensity.
Many of these young people have traveled to Salt Lake specifically to meet members of the opposite sex who are as short as they are. (If there's a gay and lesbian scene here, it has eluded me.) For some, the conference is a way to jam a year's worth of dating activity into a week. Relationships are formed here -- relationships that are sustained by email and outrageous phone bills and, for the fortunate, occasional plane tickets. Marriages between dwarfs often begin at LPA conferences -- marriages that can lead to kids and success and happiness forever after, or to divorce, as couples realize, long after the glow has faded, that they have little in common other than being short.
It's all very normal. But so are a father's anxieties.
More than 1,300 people have shown up in Salt Lake during Fourth of July week, and it appears that roughly half of them are dwarfs, the other half family members of average size. This is my first national conference. We've attended a number of regional conferences, where Becky has practiced her dance moves with her friend Janis, who's also a dwarf. But this is bigger than any gathering I've seen.
At any time of the day or night, the hotel lobby is swarming with little people, or LPs, as dwarfs are often known. The achons -- those with achondroplasia, that is -- predominate, and, since they tend to be the healthiest, with the fewest disabilities, they're often seen walking, running or just lounging around. The second-largest group comprises those with diastrophic dysplasia, who usually undergo numerous orthopedic surgeries from childhood on; many of the diastrophics zip about on scooters to cut down on the amount of walking they have to do. Those with SED (don't ask what it stands for) can grow to well over four feet, but some are tiny, just three feet tall or less. There's another group of children here with primordial dwarfism, a very unusual condition with an adult height of well below three feet. And there are many other varieties as well: something like 200 distinct types of dwarfism have been identified, and some people with dwarfism never receive a definitive diagnosis.
If you're looking for objectivity, or even just the usual degree of journalistic distance, stop reading. Not only is our daughter a dwarf, but I'm an LPA volunteer -- I edit LPA Online (www.lpaonline.org), the organization's Web site. Throughout the week, people walk up to me, scrutinize my name tag, and say, "Oh, you're Dan Kennedy." A few people are surprised to learn that I'm not a dwarf. One person, somewhat unaccountably, says he'd expected me to look like Jerry Garcia.
Thus I quickly lose the degree of anonymity that the Internet has provided me these past several years -- an anonymity to which, in truth, I hadn't really given much thought. I've come to Salt Lake to learn, and I do. What I hadn't expected is that, just by being there, I've given others a chance to learn something about the mysterious figure behind LPA's online presence -- the "ghost," as the outgoing president, Leroy Bankowski, jokingly puts it at one of the sessions.
Such anonymity is something most LPs never know. From childhood on, they are known to all, fussed over, picked on, overindulged, and laughed at. Many LPs have told me that, as far back as they can remember, everyone has known their name.
What is it about dwarfism? Why are people so fascinated? I find it impossible to explain. Yet look around, and little people seem to be everywhere, from documentaries on HBO and the Discover Channel, to lowbrow daytime TV shows hosted by Maury Povich and Montel Williams (actually, Montel's not so bad), to Howard Stern's loathsome radio-and-cable program, which regularly hosts the likes of Beetlejuice, a dwarf who appears to be microcephalic, and Bridget Powerz, a short-stature porn star.
Perhaps the explanation lies partly in the mythological aspects of dwarfism -- a mythology that extends well beyond the little-people-living-in-the-forest images of Western culture. At the LPA conference banquet, there's a performance by a Native American dance troupe, the same group that performed at last winter's Olympic ceremonies. Following the performance comes a certified -- and entirely unexpected -- Awkward Moment, when one of the leaders starts talking about the role of little people in Indian folklore as guides to the afterlife.
"We very much believe the little people are there to protect us," he says. Another member speaks of learning as a child that little people "lived in the forest, they lived in the timber," adding, "We were always taught these stories ... that if you ever saw these people, you would share very special blessings." He then makes "an offering to the little people," presenting a Native American blanket to Bankowski, who drapes it around his shoulders and smiles gamely.
And that's the good side of this odd fascination. The bad side is expressed by LPA's new president, Matt Roloff, a diastrophic dwarf who's a successful software developer and sales executive, who tells me, "I literally had someone who was very well-educated -- he had thousands of people who worked for him, the vice-president of a huge corporation that you've heard of -- admit to me after a three-hour plane ride, 'When you first came in, I was petrified. I was going to keep my Wall Street Journal open between you and me for as long as possible so I didn't have to engage with you, because I was scared.'" A relentlessly positive sort, Roloff comes off as more surprised than offended by the encounter; he ended up turning the executive's admission into a "teachable moment." Still, you'd think strangers wouldn't be that put off by the fact that Roloff is four-foot-one and uses crutches and a scooter to get around.
Of course, part of the fascination is that we average-size folks don't often see dwarfs. About one in every 20,000 children is born with achondroplasia, which accounts for half or more of all cases of dwarfism. Many dwarf adults speak of never having met another dwarf until they attended their first LPA function. And though dwarfism results from a seemingly insignificant genetic mix-up, the condition itself is visually dramatic. Spend some time with dwarfs, and you start to see the same variations that you do with the average-size population -- the attractive, the not-so-attractive, the thin, the pudgy, the young, the old. The uninitiated, though, are more likely to focus on how they differ not from each other, but from "normal," average-size folks -- in the case of achons, such differences include their exceedingly short arms and legs, swayback posture, slightly enlarged heads, prominent foreheads and pug noses.
Oddly enough, the entertainment industry, which has been the source of much dubious employment for little people, seems to be ahead of the rest of society these days in placing dwarfs squarely in the mainstream.
Take, for instance, Meredith Eaton, a 27-year-old psych-student-turned-actress with pseudoachondroplasia, a type of dwarfism that, unlike achondroplasia, does not affect facial features. Eaton met her husband, stockbroker/actor Michael Gilden, who's achon, at the LPA conference in Atlanta in 1997. She'd won a highly coveted slot in the PhD program at Adelphi University -- but then heard about a movie that called for a dwarf actress to play a non-stereotypical role. She got the part and has been working in entertainment ever since. (The movie, which also stars Kathy Bates and Rupert Everett, will be released later this year under one of two titles -- either Unconditional Love or Who Shot Victor Fox?)
Eaton played a prostitute in an episode of NYPD Blue -- a part she accepted, she says, only after the show's creator, Steven Bochco, agreed to tone down the use of the word "midget," which is considered derogatory by most people in the dwarf community. "In the script, the cop says to me -- he's referring to one of my prostitute friends -- and he says, 'Is Brenda a midget, too?' And my famous line that I created is, 'It's little person, asshole,'" Eaton tells me, laughing in delight.
Eaton may be best known for playing the lawyer Emily Resnick on the recently canceled Family Law -- another non-stereotypical role that featured, among other things, a romance between her and a dwarf man played by her husband. And her fan mail, she says, has convinced her that she's been able to make a difference in people's lives. "I've gotten, 'Thank God, finally, you've played a lawyer, my daughter's being taken more seriously,'" Eaton says. "A woman came up to me and said, 'You know what? I'm respected more in my workplace now. Thank you, thank you for giving me confidence.' So I know I've made an impact in a positive way."
A more non-mainstream type of mainstreaming, if you will, can be seen in the new movie Cherish, whose stars include Ricardo Gil, a photographer and artist who lives in San Francisco. Gil, 45, plays the gay, Jewish, wheelchair-using downstairs neighbor of a woman who has been falsely accused in the death of a cop, and who is confined to her apartment by an electronic ankle bracelet. (In real life, Gil, who has a type of dwarfism called cartilage-hair hypoplasia, is ambulatory and married to an achondroplastic woman named Meg. They are the parents of an average-size daughter, Lily.) What's unusual about the part is that there was really no need for it to be filled by a dwarf. The director and writer, Finn Taylor, had included it so the role could be filled by a friend of his, the new-media innovator Gary Brickman, who was indeed a gay, Jewish, wheelchair-using dwarf. But Brickman died before filming could begin.
Gil had retired from the film business after breaking his neck in a stunt in the mid 1980s, an accident that nearly left him paralyzed and that required two operations to repair. He says he was making his daily visit to the coffee shop at the French Hotel in Berkeley, when Taylor walked in and invited him to read for the part, telling him a dwarf actor who'd tried out in Los Angeles had done fine, but wasn't quite right. It turned out that Gil was competing with his brother, Arturo Gil, a full-time actor best known for his work on Ally McBeal. Ricardo Gil says he felt some trepidation after beating his brother out, but adds that Arturo has remained supportive.
"I guess we see so many roles that aren't real -- fantasy-type characters -- and not enough of the character roles that Meredith Eaton did or that Art did on Ally McBeal," Gil tells me. "Those are the kinds of roles that I want to see more of. But it's hard for me to say anything against people who are earning a living at being a clown or taking demeaning roles. I've actually taken on some demeaning roles. And the only thing I can do now is possibly take on a role like Cherish and show people what a wonderful role this is, and what an interesting role, and promote it, talk about it. I can't be judgmental."
There is, unfortunately, a lot more to dwarfism than just being short. Even people with achondroplasia, who tend to be generally healthy, rarely escape the surgeon's knife altogether. Matt Roloff's wife, Amy, who's achon, says she has never had a dwarfism-related health problem -- and was stunned when their achondroplastic 12-year-old, Zachary, contracted a respiratory virus at the age of nine months that nearly killed him because of his dwarfism-narrowed breathing passages. Zack later needed a shunt for hydrocephalus and surgery to straighten his legs. (The Roloffs also have three average-size children.)
Our daughter, Becky, has had her share of problems, too. When she was five months old, she caught the same respiratory virus as Zack Roloff; because she had already been suffering from obstructive sleep apnea, she had to have a tracheotomy and supplemental oxygen. She was in the hospital for two months, and when she was released, it was to a home filled with oxygen tanks and beeping monitors and nurses who would come in every night and watch over her while my wife, Barbara, and I got some much-needed sleep. She -- and we -- have been lucky: the tracheotomy was reversed a few months before her third birthday, and her health has been fine ever since. But we learned some unforgettable lessons about the kinds of problems that dwarf kids can run into.
Given these realities, it's no surprise that one of the highlights at each LPA conference is the medical clinic set up by members of the organization's medical advisory board. On Wednesday afternoon, after all the other doctors have left for the Fourth of July holiday, I hang out with Dr. Michael Ain, an orthopedic surgeon at Johns Hopkins Hospital, one the country's leading facilities for dwarfism-related medical problems. Ain himself is an achondroplastic dwarf, a blunt, funny man with close-cropped hair. He's full of stories -- about nearly getting knocked over by Jackie Onassis when he was attending Phillips Andover Academy (she hadn't looked down) , about playing second base for the Brown University baseball team. He graduated from Albany Medical School in New York, which accepted him after numerous others had turned him down, convinced that his dwarfism was incompatible with the demands of the operating room.
Ain and the other doctors have set themselves up in a three-room suite on the 15th floor of the Marriott. Now it's just him and Kathleen "Dee" Miller, who's the clinical coordinator at Hopkins's Greenberg Center for Skeletal Dysplasias, and who is also an achondroplastic dwarf. Ain sees patients in one of the bedrooms. First up is Marci Kobs, a 14-year-old achon who's here with her average-size parents, Lynda and LeRoy. Marci's been experiencing pain and numbness in her legs whenever she carries her heavy, book-laden backpack. Ain asks her to walk. He notices the surgical scars on her legs, and guesses -- correctly -- from the pattern that she'd undergone leg-straightening surgery by Dr. Steven Kopits, a much-beloved surgeon and dwarfism specialist who died of a brain tumor several weeks before the conference. Ains's prescription for Marci: a backpack on wheels. He explains to her that an achon's spinal column is often too tight to accommodate the spinal cord within. Though surgery is sometimes required, it's best to put that off as long as possible. "If you can walk long distances without carrying a backpack, I wouldn't carry a backpack," Ain tells her. "What we want to do is protect your back for the next 80 years. Or maybe 90. Do you want to live to be 100?" Marci responds shyly: "I don't know."
Next is Lauren Mayeux, 16, who the night before had played a mean hillbilly fiddle during the LPA talent show. Lauren, who's achon, has been experiencing spasms and pain in and around the shoulder on which her violin rests, but she and her mother, Nancy, are having a hard time pinning it down. "It's kind of vague -- it's here, it's here," Ain says, explaining the difficulty of providing a diagnosis. He then adds that if the problem persists or gets worse, they should take the shuttle to Baltimore (the Mayeuxs live in Florida) to be examined more closely by him and another doctor. "You could fly up that morning and go home that night," he suggests.
Later, he does a follow-up examination on a 16-and-a-half-year-old achondroplastic young man named Ryan Rapert, on whom he had performed a spinal fusion two years earlier. "It looks fine, seriously. It looks awesome," Ain tells him, adding with a laugh: "Whoever did this was really smart."
Then comes a truly scary case -- scary because it underlines exactly how fragile the health of many dwarf kids can be. Until this spring, the only achondroplasia-related problem troubling 11-year-old Kate Peterson was the bowing of one leg; Kopits operated on her when she was 6. Then, quite suddenly, she lost the ability to walk, regained it, then lost it again. She and her mother, Jennifer, flew from their home just outside Omaha, Ne., to Baltimore so that Ain could crack open the upper end of her spinal column to relieve the pressure and then perform a spinal fusion. Now, three months later, she walks into the hotel bedroom unassisted, looking quite healthy except for a massive head brace that's held in place via a frame strapped around her chest and back. Ain tells Kate and her father, Russ, that she can switch from the brace to a soft cervical collar as soon as she gets home -- and maybe a month or so after, get rid of that, too.
"She should chill for the next three months," Ain tells Russ Peterson, explaining, "For a fusion to be completely solid, as solid as it's going to be, is one full year." In other words, no running, no jumping and no swimming, which Kate loves. As for the brace, Ain tells her, "How about this -- a year from now, drive over it with a car." Later, in the waiting room, her father tells me, "She's a real brave kid. Obviously, Mom and Dad were real concerned."
The last time I see Kate is in the hotel elevator. She and her father haven't waited until they get home -- they've found a cervical collar in Salt Lake, and she's wearing that instead of the head brace. With the hardware gone, it is much easier to admire her head full of long braids.
"I so couldn't wait," she tells me, obviously pleased.
Fourth of July and it's nearly 100 degrees, dry, as if it were winter and you'd shut yourself in a tiny room with a couple of electric heaters turned up full blast. I'm at Rice-Eccles Stadium, where LPA has scored a block of front-row-center seats for something called the "Red Hot 4th."
The show is a weird combination of schmaltz, patriotism and belligerence. The first act is a band led by Chuck Negron, the oft-rehabbed former lead singer of Three Dog Night, who rips through a surprisingly energetic and loud set of old hits. He's followed by the alleged headliner, Kenny Loggins, who tries with limited success to rise above his innate flaccidity. We're also treated to three huge military helicopters zooming overhead (cool, but I'm glad we aren't celebrating an Afghan wedding or something) and an evangelical group of boy singers called Jericho Road. An elderly war hero angrily leads a recitation of the Pledge of Allegiance, the words "under God" spat out in defiance of "some judge in California," as it was put by a local news babe who's emceeing the event. The show ends with a fireworks display accompanied by the four armed services' official marches. The closing strains of the "1812 Overture" are briefly heard toward the end.
The image that stays with me, though, is not of the helicopters, not of the militarism, and certainly not of Kenny Loggins. Rather, it is of the aisle next to the LPA section, filled with teenage girls, nearly all of them dwarfs, every one of them beautiful and laughing and waving her arms and swaying back and forth to the music. It is a picture of utter normality, a picture that -- no matter how smart and happy and popular they may be back home -- would be hard to duplicate anywhere but here.
For one week a year, they are surrounded by hundreds of people who look like them. In a culture that places outsize importance on appearance, that's important -- more important than it should be, but that's not likely to change anytime soon.
And it's something I'm glad my daughter is part of, and can be more a part of as she gets older.
Even if I do worry about those dances.
- Fred Hayes
- About one in every 20,000 children is born with achondroplasia, which accounts for half or more of all cases of dwarfism. Many dwarf adults speak of never having met another dwarf until they attended their first LPA function.