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The Boston Globe OnlineBoston.com
Boston Globe Online / Living | Arts
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It's a small world

People with dwarfism gather in Danvers to stand strong, share stories, and escape some everyday cares

By Joseph P. Kahn, Globe Staff, 7/5/2003

DANVERS -- Earlier this week, Michael Dibben, an Internal Revenue Service supervisor from Omaha, was getting measured for custom-fitted shirts and neckties in the lobby of the Sheraton Ferncroft Resort hotel. The 52-year-old Dibben stands 42 inches tall -- only slightly taller than most men's inseams. His form of dwarfism, called pseudoachondroplasia, makes finding clothing that fits a daunting proposition, as hard for him as reaching the buttons on an ATM or making eye contact with someone on the street.

But for the next few days, Dibben was an average, ordinary guy -- just another face in a crowd.

''Everyone comes here for a different reason,'' said Dibben, glancing around at a hotel lobby filled with adults of more or less equal height. ''But the bottom line is, you make friends here from all over the world.''

From dawn until well past midnight, hundreds of little people, or LPs, as those afflicted with dwarfism prefer to be known, have been gathering in the hotel for the past seven days to socialize and compare notes -- medical and otherwise. Collectively they make up the public face of Little People of America Inc., a national organization providing support for people of short stature -- defined as those 4 feet 10 inches and smaller, who may or may not have heads and limbs of proportionate size -- and their families. The LPA's annual conference continues through today, with nearly 1,500 of the more than 5,000 members registered for the weeklong program.

Wearing everything from bathing suits to ball gowns, attendees sprawl on hotel couches or queue up for fittings of custom-tailored clothing in a hallway off the main entrance. They cruise past the front desk on motorized scooters and scan the message board for late postings of events such as Wednesday's workshop for ''interspatial couples,'' a term used to describe romantic relationships between little people and persons of average stature.

They behave, that is, much like conference participants anywhere.

Discussion groups and product demonstrations have vied for attention with golf outings and talent shows. Buses depart daily for tourist destinations such as Fenway Park. Teenagers seek out one another to hang out. Many young attendees are already e-mail buddies, having met at prior LPA events. Others will become cyberpals, or even closer, before the week is through.

Brad Williams, 19, of Orange County, Calif., was chatting with two friends in a corner of the lobby this week. What's cool about a conference like this, all three told a reporter, was meeting people their own height. Lots of them.

''At least one time a year, you get to feel normal,'' said Alicia Calhoun, 19, smiling brightly.

Williams nodded. ''We walk down the street, and normally people don't look at us. Or, they look at us funny,'' he said. ''Here it's like, wow. People instantly connect. You could actually meet someone for a long-term relationship, even.''

With a smile of his own, Williams noted that having so many little people in one place can be startling to the unsuspecting or uninitiated. ''I went to a conference in the same hotel as an Alcoholics Anonymous convention once,'' Williams recalled, describing the scene at the hotel bar. ''We were like their worst nightmare.''

This week's gathering marks the first time in 20 years that the LPA conference has visited the Boston area and the first such meeting on the Eastern Seaboard since 1989 in Baltimore. The LPs here, many of whom appear well below 4 feet 10, have traveled from as far away as Poland and New Zealand for the conference. The crowded schedule included volleyball and soccer games, chess and bingo competitions, a fashion show, a speed-dating session, nightly dances, an exhibit by members of the Dwarf Artists' Coalition, and meetings of regional and national LPA officials. Not even a bomb threat Thursday morning, which temporarily emptied the hotel, could put a damper on the event.

Medical specialists have been on hand to provide counseling for LPs and their families. Workshops have covered topics ranging from neurological concerns to pregnancy and psychological issues. At a product expo, shoppers could check out custom-built bicycles and gas-pedal extenders for cars. There's a sign-up sheet to audition for the Radio City Music Hall traveling holiday show. Those with a puckish taste for political incorrectness purchased T-shirts from Danny Black, a Michigan talent agent and performance artist who runs the website www.shortdwarf

.com (''where size meets reality''). Black, a provocateur, peddles shirts emblazoned with messages (e.g. ''midgetpalooza'') that irritate many in the LPA community. On Monday, after brisk sales, he received a letter ordering him to stop selling a shirt with ''Amish Midget Militia'' printed on it. Hawking the shirt constituted harassment, LPA officials contended. On Tuesday, Black got thrown out of the hotel for good after handing out drinking straws and navy beans to several teens, instigating a pea-shooting war.

''I'm dealing with the reality of being called `midget' for 49 years,'' a defiant Black said, before he got booted. ''So I'm taking back ownership of the term, the way gays have with `queer.' Do others hate it? Yes. Too bad.''

Tensions over derogatory terms like ''midget'' -- whose association with carnival shows and circus acts has made it taboo in the LP community -- are part of a larger struggle to forge a progressive educational and social-outreach agenda, say some conference participants. For years, according to Boston Phoenix media critic Dan Kennedy, author of a forthcoming book on the culture of dwarfism, a basic disagreement persisted over whether LPs considered themselves part of the disabled community or not.

''The answer now is yes,'' says Kennedy, whose daughter Rebecca, 10, has the genetic condition known as achondroplasia and has been attending the conference with her family. The condition can affect as many as 1 in 26,000 births. ''Achons'' make up the majority of LPs, though there are an estimated 200 types of dwarfism.

A decade ago, adds Kennedy, LPA members realized the standard height for conveniences like ATMs and gas pumps accommodated people in wheelchairs -- but not LPs. Efforts are now underway to persuade government agencies to draft new regulations with the short-statured in mind. As for media images of LPs, says Kennedy, ''Things have gotten much better, although some things are worse. Like Howard Stern's show, for example,'' which featured a raunchy character known as Hank the Angry Drunken Dwarf.

Talent shows and teen dances aside, a number of vexing personal issues have been addressed here, too, especially those affecting average-size parents and siblings, who have come here for education as well as diversion.

Sunday evening featured a group discussion touching on parental concerns such as safety issues, teasing and self-esteem, and the raising of teenagers with dwarfism. A team of psychologists and social workers led the discussion. For many parents there, the overriding question was how active they should be in dealing with their child's condition. Should they provide a lot of information to teachers and classmates, for instance, and if so at what grade level? How protective should parents of LPs be, and at what cost to their child's psychological development?

''Individual teasing is one thing,'' said one professional. ''Group bullying is far more serious and calls for speaking up.''

One parent confessed, ''It's us as parents and siblings who feel the sting more than they do.'' Another said her preteen daughter was attending her first LPA conference and was ''terrified'' to be among so many LPs, having felt so isolated all her life. Yet another, her voice quivering with emotion, said, ''When they reach 18 or older, you really can't help them anymore. The phone stops ringing. The job rejections come.'' A fourth said plaintively that her 15-year-old was in severe denial about her below-average physical stature.

''She wants to be just like her friends, with long blond hair and long legs,'' the mother said sadly. ''It's very tough on her.''

Later, Joseph Buckingham of Maryland, whose son Colin, 11, is achondroplaisic, said his only complaint was that most parents attending the discussion group were average-size like himself. ''I was hoping more LP parents would be there,'' Buckingham said, ''so I could get a better perspective on what their parents had faced while they were growing up.''

Joseph P. Kahn can be reached at jkahn@globe.com.

This story ran on page E1 of the Boston Globe on 7/5/2003.
© Copyright 2003 Globe Newspaper Company.

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