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A little reality
The father of a girl with dwarfism peers into her future at the annual gathering of Little People of America
BY DAN KENNEDY

SALT LAKE CITY — The dancing begins every night at nine. There’s nothing particularly unusual about the scene: lots of gyrating, lots of strategically exposed female flesh, lots of furtive and not-so-furtive attempts to hook up for a night, a week, forever, whatever. But I see trouble. Big trouble.

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 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 e-mail 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 1300 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, you’ve come to the wrong place. 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." My work with LPA Online, and with an Internet discussion group I help administer, land me in controversy from time to time, so when these encounters take place I’m sometimes not sure whether to extend my hand or duck. (Of course, in this crowd ducking would just make it easier for someone to punch me in the face.) I quickly learn, though, that the conference attendees are remarkably friendly and supportive. 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.

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Issue Date: July 18 - 25, 2002
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