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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 ó The dancing begins every night at nine. Thereís 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. Itís taking place at the annual conference of Little People of America (LPA), the countryís largest organization of dwarfs and their families. Iím looking right past the teenagers and twentysomethings who are shimmying the night away at the Marriott Downtown. Iím looking into the future. And Iím as ambivalent about what Iím 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, whoís well on the way to being a six-footer, Becky is only three feet six inches tall. Most likely sheíll grow only another half-dozen inches or so. Sheís not with me in Salt Lake ó Iím here alone, researching a book on the culture of dwarfism. But next yearís conference will be in the Boston area, and sheíll certainly go to that. And in a few years, I have no doubt that sheíll be an eager participant in the scene thatís playing out in front of me.

Not that thereís anything particularly untoward going on. But when youíre about four feet tall, as most of these dancers are, with disproportionately short arms and legs, and you donít 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 ó shall we say ó 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 thereís a gay and lesbian scene here, it has eluded me.) For some, the conference is a way to jam a yearís worth of dating activity into a week. Relationships are formed here ó 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 ó 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.

Itís all very normal. But so are a fatherís 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. Weíve attended a number of regional conferences, where Becky has practiced her dance moves with her friend Janis, whoís also a dwarf. But this is bigger than any gathering Iíve 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 ó those with achondroplasia, that is ó predominate, and, since they tend to be the healthiest, with the fewest disabilities, theyíre 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 (donít ask what it stands for) can grow to well over four feet, but some are tiny, just three feet tall or less. Thereís 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 youíre looking for objectivity, or even just the usual degree of journalistic distance, youíve come to the wrong place. Not only is our daughter a dwarf, but Iím an LPA volunteer ó I edit LPA Online (www.lpaonline.org), the organizationís Web site. Throughout the week, people walk up to me, scrutinize my name tag, and say, "Oh, youíre 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 Iím 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 Iím not a dwarf. One person, somewhat unaccountably, says heíd 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 ó an anonymity to which, in truth, I hadnít really given much thought. Iíve come to Salt Lake to learn, and I do. What I hadnít expected is that, just by being there, Iíve given others a chance to learn something about the mysterious figure behind LPAís online presence ó 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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