Short-Stature Trio Taking the Long View
By Janine Bertram Kemp
"Yo, down here," she calls to bank
tellers, grocery checkers and others who tower over her behind counters.
Maria Telesca might be riding a scooter,
but her primary identity is not wheelchair rider: it is dwarf. She is a person
of short stature, former officer of Little People of America (LPA) and director
of professional development for Kean University in New Jersey.
"Accommodation is still a hurdle," Telesca
says. "The world isn't made for us. ADA applies, but because we are so short,
it is more applicable to people in wheelchairs."
With the popularity of the reality show
"Little People Big World" (LPBW) about Matt and Amy Roloff and their family,
there has been a resurgence of focus on people with dwarfism. "LPBW" chronicles
the family on their farm and community in western Oregon. The Roloffs and their
son Zach are people of short stature; the other three Roloff children are
not. 
Joe Stramondo
In the 1950s when actor Billy Barty
founded LPA, it was called Midgets of America. Then came the term "little
people." In people-first language, "people with dwarfism" is a politically
correct term, as is "people of short stature." Within the community, there are
some who use "little people" the way "crip" is used in the disability
community. Those involved in LPA sometimes refer to themselves as LPs.
"The whole 'little people' thing sounds
demeaning," says Telesca, who noted that dwarfs range in height from about 2
and a half feet tall to 4 feet 11. "If you Google the word, you find it is used
for children, as in Little People Day Care Center. Ninety-seven percent of
people of short stature are dwarfs. They have acondroplasia -- the upper body
is proportionate with short arms and legs."
While people with dwarfism share some
common ground with people with disabilities, the links are edgy rather than
interlocking circles. The former are covered by the definition of disability,
but disability rights laws are mainly useful to combat employment
discrimination. Architectural and public accommodations guidelines are
generally not useful to them.
"Accessible hotel rooms work against us,"
Matt Roloff says. "We can't reach the sink, bed or toilet. I don't know why we
have not pushed for stools." Roloff notes that hotel chains Microtel and
Carlson are friendly to people with dwarfism. They have done extensive
marketing to the broader disability community as well. He added that auxiliary
aids allow most people with dwarfism to perform all needed activities of daily
living. 
The history of most people with
disabilities is one of exclusion through pity and institutionalization.
The history of people with dwarfism has
been as the objects of laughter, derision and abuse. A dwarf's version of the
African-American movie character Stepin' Fetchit would be a sideshow in a
circus act. Forms have shifted over the years. There are positive media
portrayals, such as Peter Denglish in the movie "The Station Agent" and Marion
Eaton on the television series "Boston Legal."
Writer Dan Kennedy addressed the cultural
fascination with dwarfs in an article in the March 2006 edition of Slate
magazine: "…There is a certain cognitive dissonance in seeing adults who
have some of the physical characteristics of children -- the short stature, of
course, but also disproportionately short arms and legs and slightly enlarged
heads. These differences have forever cast dwarfs as celebrities, whether they
like it or not. From gods in ancient Egypt, to the royal courts of Europe, to
the sideshows in 19th-century America, dwarfs have never been allowed to just
be; every little person is intimately familiar with the supremely unpleasant
experience of being the subject of scrutiny."
Matt and Amy Roloff have seen a change in
people's attitudes since the premiere of "LPBW."
"Now it's hard to tell whether they are
gawking at us because we are dwarfs or because of 'LPBW,'" Matt says. "When we
get negative comments, it is usually because they didn't like our messy house
or something else about how we live."
Before becoming well known, the Roloffs
encountered barriers familiar to many in the disability community. "We faced
discrimination," Matt says. "Amy wanted a career in the hospitality industry
but ended up taking a secretarial job." Employers didn't deem people of short
stature appropriate for interacting with customers.
Matt faced similar employment roadblocks.
He wanted to be in sales but became a software programmer. Whatever companies
passed him up missed vast improvement in their bottom line. Roloff has
indefatigable energy, a high IQ and an extraordinarily engaging
personality.
When asked about policy changes, Matt
stresses employment and the need for employers to stay open-minded when
hiring.
"Imagine you've always wanted to open a
toy store," he says. "You have experience. You want to sell through the
Internet and from a storefront. You hire a bookkeeper and a manager. They say
they know a great salesperson and tell you how wonderful their skills are. You
hire them sight unseen after a phone interview. The person shows up with a
white cane. You are thinking they can't possibly help you sell toys. Yet that
blind person has felt toys and can bring a whole new awareness to that
product."
Roloff also believes if there were
substantial benefits to employers, they would hire more people with
disabilities and dwarfism. He suggested tax-credit incentives as well as
medical coverage.
Roloff noted that the entire disability
movement "has a hypersensitivity about language. I don't care much whether
someone uses the term dwarf, midget or little person. It's the attitude of the
person that's important. Now if someone uses 'midget' like Jimmy Kimmel did, I
really take exception."
In 2003, Kimmel ended his Fox News show by
saying: "Aren't midgets fun? Everyone should own one." That crass crack is
seared in the memory of many people with dwarfism. Kimmel's comment typifies a
slow-to-change societal attitude that deems people of short stature as
appropriate targets of mocking, laughter or more serious abuse.
Joe Stramondo has noted changing societal
attitudes and stereotypes about dwarfs.
"There have been shifts in how dwarfism is
presented in the media," says Stramondo, a 26-year-old student pursuing a
doctorate in philosophy at Michigan State University. Since he began using a
wheelchair, he identifies more as a person with a disability than as a person
of short stature.
"Cultural representation is changing as
typified by Meredith Eaton's role in 'Boston Legal.' She has been successful in
getting cast in a mainstream role. Her dwarfism isn't the point; the story of
the script is."
Stramondo, active with the Michigan
chapter of ADAPT, suggests that people examine their own stereotypes when
deciding what constitutes good cultural representation.
"It's easy to define good representation
as a college-educated Caucasian male who happens to have dwarfism. We have to
think creatively and not demonize people different from us. Circus clowns
aren't evil. It's fine if that's your desire but a shame if it is the only
choice open to you."
Stramondo, a facile communicator with a
good sense of humor, seems to understand both the cross-disability world and
the dwarf world and can see what is unique about each as well as what they have
in common.
With his work in bioethics, he hopes to
build bridges to the world of medicine. "I hope to shift attitudes in medicine
about how disability is thought about -- to work at the intersection of culture
and science," he says. "I want to look at how doctors perceive and interact
with dwarfism. Genetic screening is an area where great attitudinal progress
can be made."
Health care and health insurance
discrimination loom large in the dwarf community. The cost of medical treatment
can be huge, as many require numerous surgeries. And many people with dwarfism
are entrepreneurs, so they cannot rely on medical insurance from an employer.
Other key policy issues are employment and
housing discrimination. Stramondo noted that housing discrimination is
particularly hard to prove. "When there is cultural bigotry, it's hard to prove
discrimination because you have no data or percentages. You would have to
employ testers to try to rent housing units." Under the current administration,
HUD is not budgeting for testers.
In the disability world, civil rights and
public policy change are the focus. In the short-stature community, attitudinal
change is the major theme. Every person interviewed for this article and all
links and literature that were reviewed stressed cultural, attitudinal shifts
over legislative or public-policy remedies.
Although the mainstream culture's view of
people with dwarfism as objects at whom to point and laugh is deeply rooted,
that may be changing.
Telesca notes that this decade has seen an
exponential increase in media treatments of their issues. "With the Roloff show
and other publicity, society is being 'little peopled' to death," she says.
"There have been numerous documentaries. Each has added a little to the story."
The energy, creativity and drive of Maria
Telesca, Matt Roloff and Joe Stramondo are powerful, though differently
focused. Each is a strong leader. And with a shift in public attitudes, they
and others like them hope to point society on a path that is more inclusive of
people with dwarfism.
Janine Bertram Kemp is a writer and
longtime disability rights activist who has been involved with the Real Choice
Systems Change federal program and the Money Follows the Person initiative. The
Oregon resident is a board member of the National Coalition of Disability
Rights and the Disability Rights Center. |
