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BUT I AM STANDING!
I stop, mouth open, at the slogan on the T-shirt.
An impish blonde man with tattoos and piercings peers across
the table and points gleefully to his other designs.
GET DOWN ON YOUR KNEES AND KISS ME.
LI'L STUD.
OH MY
HECK IT'S A DWARF!
His badge says Danny, owner and operator of www.ShortDwarf.com: "Where Size
Meets Reality".
I've flown direct from the land of rampant political
correctness (Eugene Oregon) to the land of rampant Mormon worship (Salt
Lake City, Utah), host to the ultimate public celebration of small
is beautiful: the Little People of America Conference 2002. I am
simply unprepared for this breezy, self-effacing humor around a genetic
variation that results in short stature, otherwise known as dwarfism.
And I am instantly disarmed.
Bike Friday attended
the conference for the first time ever, sending the two littlest people
in the office, Gaylynn and Lynette (relative giantesses at
a shade under 5-foot nothing) to offer the dwarf community an
alternative to riding a clunky kid's bike for travel and exercise. BF
had already built custom road bikes for dwarf customers, Dan Okenfuss
and Wendy Sarratt, and it was their suggestion that we go along and um,
pedal our wares.
Dan Okenfuss
(danoken@aol.com) demonstrates his Pocket Rocket
to a friend
"Dwarf people often have joint and hip problems, we have to
stay active," says Dan, who commissioned Bike Friday to make him a bike
to ride the 115-mile El Tour de Tucson, alongside his 6-foot brother
Chuck.
OUR JOURNEY to the seat of the Mormon faith was blessed by the
hospitality of BF owners Bob and Susan Weirick, whose garage indicates
they possibly have more Bike Fridays than Bike Friday.
The hills of Salt Lake City
near the Weirick's place
Salt Lake City is hot, dry and landlocked, conducive to
serious contemplation of one's politely covered naval. The Mormon
Temple
rises from its scorched-concrete piazza like a wedding cake, iced with
florid spires, thick walls, calm pools, manicured turf. Teetering atop
one of the spires is a golden angel blasting on a bugle, steering the
way to salvation. I peek into the dome-like structure housing the
Mormon
Tabernacle Choir but no-one has the mike. The Mormons don't escape
Danny@ShortDwarf.com's dig in the shins either:
ONE WIFE, SEVEN DWARFS, WE HAD THE IDEA
FIRST!
Danny is making a mint selling dish cloths and handtowels
stencilled with this Mormon-centric guffaw. Some of his peers shake
their heads in bemusement and comment that they never know how far this
cheeky entrepreneur will push the boundaries of etiquette. Running a
close second in Danny's dishcloth sales is an in-quip, "Oh my heck,
it's
a dwarf!"
I ask Gaylynn to enlighten me on the latter.
"It's a SURVIVOR joke," she says. "One of
the contestants was from Salt Lake City and On My Heck is what she said
every third word."

Spot the golden angel.
I HAD PACKED my tiny 9-speed Crusoe and Gaylynn her
tiny SatRDay
recumbent,
confident that with my seat dropped way down and her seat shunted way
forward, the Little People could test ride our bikes.
No way.
The height of the average delegate ranged from 2'0" to 4'10",
considerably littler than little ole us. Fortunately, Dan generously
had
offered his green Pocket
Rocket and charismatic presence to educate his peers.
The first day started out humorously enough. Gaylynn and I
tried putting the Family
Tandem together and got one of the center tubes round the wrong
way,
making it impossible to put on the timing chain or indeed, pull the
bike
apart to fix the problem. We eventually had to sheepishly enlist the
help of the only other bicycle manufacturer present, Gary Atherton of
Atherton Cycles,
a veteran custom builder for the Little People market.
"We're not mechanics, we're just the Littlest People at Bike
Friday," I
mumbled inanely as he wrestled the crank off, thus saving our
posteriors.
Such is the camaraderie of the niche bike industry.
Then they came: on foot and on hi-tech electric scooters, with
and without
walking frames, canes or a supportive arm, standing on tippy toes to
fill
out a card, to shrewdly and skeptically peruse our brochures. If a
delegate towered over the rest we soon realized he or she was a parent
or friend of a newborn dwarf child, carefully investigating the options
for their tiny offspring.
At first I felt like a big flapping fish in a bowl of tiny tetras,
apologetic for my comparatively regular stature. I found myself
involuntarily hunching myself over to talk to people, like a 6'0"
debutante with size 12 feet.
This initial feeling vanished by mid-morning, when the
various
compact body shapes and sizes suddenly seemed perfectly normal.
In
fact, whenever a regular-sized body glided up to the table my mind
bleeped, "excess packaging". After all, our brains are around the same
size, why the need for all that brawn?

Dan and brother Chuck ride el Tour de Tucson, 110 miles on
Dan's custom Pocket
Rocket. "I wanted something I could keep up with my friends on,
that was going to last me a long time. Bike Friday was the only one I
really considered."
"The way we see it, we're the
fortunate ones…"
The softly spoken, normal-height, English father-of-four smiles in a
way that says, I really mean that.
Aiden is one of 1200 delegates who have traveled to the
convention from as far as the UK, Australia, Europe and even Albania.
Two of Aiden's sons are of regular height. His third and adopted fourth
child were both born with achondroplasia, one of over 200
different forms of dwarfism, and characterized by a disproportionate
body and limbs. However, judging from the kids I saw racing
breathlessly
around the Hilton lobby, dwarf children are as energetic, loving and
tiring as any.
"She's a little bundle of energy, she tires us out"
says Aiden of Jessica, his adopted dwarf daughter.
"Her birth parents could not see beyond the
problems," he said. "All we could see were the good things."
The birth parents had since separated, despite subsequently raising a
normal height child. Little Jessica was, perhaps, the luckier of the
two.
All day, delegates shuffled between seminars and activities
designed around their concerns: medical issues, intermarriage with
a regular height person, acceptance in the workplace, dwarves
rights, discrimination and so on. I wondered about discrimination, and
was inspired to hear that if anything, it tends to the positive.
Because
dwarfism rarely affects the brain, Little People have been able to
achieve great standing in all fields of endeavour, even sport, as
evidenced by the annual Dwarf Olympic
Games.
Aiden and his family were just one of the many inspiring
people I was privileged to meet. Here, I salute a handful more:
John and Chuck are a couple of burly tank-topped lads,
4'10"and 90lbs each. Chuck is a self-confessed backslid Amish who
drives
a "repo man" truck for a living. I automatically visualize this
pocket-sized wrestler base-jumping from the driver seat to the ground.
An earlier stroll around the exhibitors booths revealed why Little
People do not necessarily drive little cars: driving is made possible
by
the pedal extender, of which there are different designs and styles,
aggressively marketed by two or three Little People-powered
enterprises.
The extender is a metal arm of appropriate length bolted or latched
onto
the gas and clutch pedals.
Chuck tells me he drives about 20 minutes to go clubbing outside his
village with his non-Amish friends. He sports tattoos and a shaved head
and if I kneel to meet him eye to eye, I could get scared.
"Got no email," he says, when I invite him to fill
out a card. "No phone,
no nuttin'."
"I think I'd like to become Amish," I say wistfully,
adding, "don't you
think the world is just too commercial, too stressed, mailboxes
overflowing with toy catalogs to replace human connection with Internet
connection, human beings becoming human doings...? "
He plants his hand on my shoulder.
"You wouldn't want to be Amish. Trust me."
The pair makes a running leap for the Family Tandem, despite Chuck
nearly castrating himself on the too-high seat. "We wanna take it out
on
the street!" they say. I want to take out a hacksaw immediately and let
this dynamic duo take it out and take on the world.
"I wanna take it for spin round the city!" says Jodi
Jodi is a 24 year old with real attitude, a 4'10"
dwarf in
the non-genetic
sense. As a child she contacted viral meningitis, suffering lengthy and
painful operations to reshape a pair of legs growing outward at
90-degree
angles, resulting in a normal upper body but short legs. This calamity
has
not stopped her from winning the gold medal in every snowboarding
category of the Oregon Winter Games for 2 years running - against
regular-height competition.
"I've got a crappy 24-inch wheel kids bike that
doesn't fit," she says, swooning over Dan's bike. "If I had that Bike
Friday I'd ride instead of drive, which would keep me fit."
She describes the fearless way she approaches a rocky trail - and life
in general - on her crappy kid's bike: "I don't mind going over the
handlebars - I just roll." (Jodi has since ordered a Bike Friday Pocket
Llama mountain bike with front suspension).
I note that Little People have big dreams. They want front
suspension even though designing a bike to include this can be a
challenge for a tiny rider. They drive normal cars, they want a normal
bike. They're adults, not kids. And the kids are, well, kids.
Dan and Ronna are a couple with a type of dwarfism called SED, and
in their case they are perfectly scaled down to 4'10", with limbs,
torso
and head in perfect proportion. They are the only little people here
able to fit on our standard Family Tandem, due to their longer legs.
"We
want one," they
say. "We want to ride together."
Before I jump to the conclusion that SED's are the luckier of the
syndromes, Dan explains: "SED is characterized by a number of things,
typically a slight barrel chest, slight curvature of the spine, long
arms and fingers." He points to a barrel-shaped gentleman who is mostly
head and torso, and a distinguished head and torso at that. But little
else. "He's SED too."
I mention that all of the Little People I have spoken to seem really
knowledgeable about their type of dwarfism and that of others.
"Oh yes, typically when one dwarf meets another,
it's 'show me your hands and ears'. We try to work out what kind of
dwarfism they have."
Just like the rest of us, on meeting a stranger, say or think,
'what do you do for a living?', I think ruefully.
Matt Roloff is the newly elected president of the LPA.
Square-jawed and
handsome, he looks every bit the film star from a dignified past era, a
scaled-down Robert De Niro or Tony Curtis, smaller than life. His
hardcover autobiography is selling like hotcakes. I run to catch him as
he zips about on his little electric scooter, so he might dedicate my
copy to my boss, an avid collector of books by and about extraordinary
people. We talk about developing a pedal assisted scooter so a little
person can get more exercise than pushing a button. He thrusts a finger
at me.
"That's IT! A bicycle with three wheels and no
motor, three wheels so I
could stop and talk and not fall over, and no motor so I could stay
fit….build it and I'll sure as hell promote it." I know he means it.
As we talk, numerous peers politely approach and interrupt with
agenda items for the 2pm meeting. Elected president just this morning,
Matt's
already in the hot seat. At one point a colleague approaches and alerts
him
about "some suspicious woman who's come with a group to see the freak
show."
Matt rolls his eyes and waves a hand as if to say, "yeah whatever -
there's always one of 'em".
I am in awe of the self-esteem and quiet assuredness exuded by these
people. They have been dealt one of nature's harshest blows, and had to
come to terms with it in this height-oriented, image-conscious world.
Learning to overcome it right from birth seems to develop an acute
sense
of self-worth in every little person I meet. The suffering they have
endured, both physical and emotional, is obvious. By the time they make
it to adulthood, nothing seems an issue. They simply don't sweat
the small stuff. I find it refreshing. I want to be around these
people,
and what they emanate, every waking day.
The toughest rite of passage a Little Person must endure must
be the teenage years, where appearance is everything.
Michael, from New York, is a hip and cool 20-year-old with
a goatee beard, silver python chain and a T-shirt that reaches to his
knees that says,
'DISTURBED'. I ask, and to my relief discover, it is the name of a band
not the state of his mind. He speaks softly, hesitantly, admiring the
bike and saying he has never ridden one. Like so many, his head, torso
and arms are of normal length, but his legs are a mere 15" long. His
mother Miriam, part
Haitian, part Italian, has tired eyes and a gentle face lined with
years of
concern and at times, she admits, despair, at the "cruel treatment" her
son
has suffered from his peers.
"I tried to get him to come to this convention for
years," she confides
when he is out of earshot, "but he never would."
I think, perhaps he could not face those who would be a mirror to the
unlucky roll of the genetic dice that had made his young life hell.
"Friends, little people we know all said to him, you
gotta go, so at least
he's here," she says. "He's overwhelmed, his eyes are wide open, he's
not saying anything to me, I am staying out of his way and letting him
just be here."
I am stilled by the enormity of her unfailing love.
Angela is a tiny lawyer who is selling her book "Dwarfs Don't Live
in Doll Houses." She is a shining example of Little People making a
giant mark on the world. Her book jacket says, "Born and raised in New Zealand, Angela
Muir Van Etten is deeply committed to the cause of short-statured
individuals, having served as President of the Little People of New
Zealand, and as a spokesperson on many regional and national talk
shows,
including the Phil Donahue Show." You can contact Angela on
angelvan@adelphia.net.
She is married to Robert, who makes and sells tiny swivel
gas-lift office chairs to a ready market. I discover that these chairs
fit me well, as many chairs in airplanes, cinemas, you name it, seem
designed for a minimum height of 5'2". I can tell this by the way my
feet always dangle ever so slightly annoyingly. Angela gently dispels
my
starry-eyed notion that Little People have the small stuff all sorted
out.
"They seem just fine," I had said, after watching
Angel, a tiny woman with a head the same size as her body and a wicked
sense of humor, doing brisk business from her perch selling furniture
scaled for little people, cellphone clamped to one ear and a ring
glimmering from every tiny finger.
"Well they're not," smiles Angela. "And we have our
issues too, maybe not the same issues, but we've got them."
Thus reassuring me that Little People are not superhuman, they
are human.
~~~
I SLIP OUT of the room and spot a handful of tiny, reed-thin
children with little triangular faces and bird-like features: large,
leaf-shaped eyes, small mouth, arms and legs the diameter of chicken
bones.
"Primordial dwarfism," explains Angela.
"Very rare. Those families must have located each other on the Internet
and met up here."
The kids laugh and run and tumble, and I worry about those bones.

We're all the same height
lying down ... and from this
angle.
IN THE LOBBY the delegates lounge and party, the girls
gorgeous in
sexy, tight fitting spangly tops and jewelry, boys in hip threads,
cavorting and flirting together. They pair up in their own world, a
micro-society where folk taller than 4'10" loiter at the perimeter,
looking in.
It is a special world. Occasionally a dwarf will marry a
person of normal stature. We meet a young woman 4'6" who is married to
a
6' man. There is even a seminar devoted to that kind of pairing.
I walk upstairs and look down upon the delegates mingling in the lobby.
At this altitude, everyone, 2'6" to 6'6", look about the same. I take a
photo
to toy with the notion that this is how a "God" up on high sees all
creatures great and small. All of equal stature.
IN THE BOCCE ROOM a tournament of this curious Italian game of carpet
bowls is in hushed progress.
"It's popular because it's non-injurious to our joints," says Dan. I
notice how he and others use "we", "our" when referring to self.
I sense that to be a Little Person is to know that wherever you go,
despite stares and unsolicited pity, you have something that is missing
from the lives of many of those doing the staring and pitying: you are
part of one big understanding family.
Cheeky Danny has the last word. He is
also selling some long barbecue-type tongs alongside his controversial
t-shirts. I think about it, imagine they are for reaching for
things, and finally ask him what they are for.
"Bottom wipers," he
says unfazed, wrapping toilet paper round the ends.
The onlookers discuss the apparatus
matter-of-factly, as if it is a new kind of salad spinner or nose hair
plucker. I realize that the only person fazed, but just for a moment,
is
me.
Copyright 2003 Lynette
Chiang All Rights Reserved.

Jodi Sahi, who has since gotten her very own Bike Friday Pocket Llama!
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