Little

People, Big World

Jessica Tews

As a college student, heavy backpacks are part of the norm, long walking distances
are standard and stairs are inevitable. For Mikaela Stevens, a student at Brigham
Young University-Idaho, these challenges compose some of the hardest parts of a
typical day on campus.

I could use a wheelie bag but it is really hard with all the hills and the stairs because
its like harder to get up the hills because of the resistance, and there are just so
many stairs.

Stevens prefers to use the ramps because they are easier for her to walk up, but
often it requires a further walk around the stairs to take the ramp. Sometimes I
wish I had a faster mode of transportation.

I do have an electric scooter but I havent used it for a long time. Its actually
pretty big. I think my mom wanted it that way so people could see me.

3-foot-1inch tall Stevens, has dwarfism, and the need to be visible is part of her
every day.

Background

Stevens was born with dwarfism, a medical condition characterized by slow growth.
The Oxford English Dictionarys description is a human being much below the
ordinary stature or size. While some descriptions of dwarfism are more specific
than others, the national non-profit organization, Little People of America (LPA),
defines dwarfism as a medical or genetic condition that ensues adult heights of 4-
feet-10-inches or shorter. Average heights of those with dwarfism are 4 feet and the
typical heights range from 2-feet-8-inches, to 4-feet-8-inches, said LPA.

Dwarfism has several different types. LPA said that there are over 200 diagnosed
types of dwarfism and among the common forms of hereditary dwarfism are
achondroplasia, hypochondroplasia, and diastrophic dwarfism. These are all forms
of dwarfism with disproportionate limbs.

While LPA said that some of those with dwarfism would never have a definite
diagnosis of what condition they had, Stevens parents were able to find out her type
when they attended an annual clinic. There, a geneticist was able to diagnose one-
year-old Mikaela with Spondylometaphyseal dysplasia with cone-rod dystrophy.

Stevens was almost two years old before she began to walk. It was partly because
of [dwarfism], but also partly because I was the oldest; I was the only one; I didnt
see a need for it, said Stevens.


Mr. and Mrs. Stevens have eight children, three of which have dwarfism, including
Mikaela.

My parents have a recessive gene and they both carry it, so it showed up. I think
there was about a 24% chance that they would have a child with this type of
dwarfism.

Besides her siblings, Stevens, however, has one other relative an aunt with this
condition. She has a different type of dwarfism making it unrelated to Stevens
dwarf children.

Day-to-day

Stevens said, Basically I do the same things that other people do, just in a slightly
different way. I adapt what I do so I can easily accomplish it. Stevens explained that
sometimes the task takes longer, but usually she gets it done fairly quickly.

LPA said that while the medical prognosis varies from condition to condition, the
majority of LPs enjoy normal intelligence, normal life spans, and reasonably good
health.

According to LPA, athletic activities are acceptable and workouts involving
swimming and bicycling are often recommended because they reduce the pressure
placed on the spine. Often, those of short stature have conditions of skeletal
dysplasia, and so activities like long-distance running and contact sports can be
harmful because of this reason, said LPA.

Stevens, a communication major, has two semesters left at BYU Idaho and
describes herself as being very involved in her studies.

I stay really busy at school but I am able to accomplish a lot.

Some difficulties for Mikaela are in the form of daily tasks such as carrying a heavy
backpack long distances. Another area of concern are the crosswalks that surround
BYU-Is campus.

Stevens says that it makes her nervous to cross the crosswalk in the dark
especially, because of the low visibility and often poorly lit crosswalks. She tries to
cross with others, but there are not always people around or they are not going in
the same direction as Stevens.

I just try to be visible, said Stevens.

Misunderstandings and Clarifications

According to Christopher Phillips, manager of Disability Services for the Church of

Jesus Christ of Latter-day Saints, the preferred terms for those with this condition is
dwarf, little person or person of short stature.

LPA said, Such terms as dwarf, little person, LP, and person of short stature are all
acceptable, but most people would rather be referred to by their name than by a
label.

Stevens prefers to be called little.

Midget is a very offensive word, its considered not politically correct, Stevens
said. While a person might not walk up to someone with dwarfism and call them a
midget, using this as a nickname in joking with others can be overheard.

LPA said that the term midget dates back to 1865, during the freak show era, and
was used to describe those of short-stature for public amusement, which is why it
is considered so unacceptable today.

Phillips said the phrase, special needs should not be used very often. He also said
that those with disabilities do not need to be highlighted, but that they just want to
be respected.

People are people first, said Phillips.

Another misunderstanding comes from others hesitancy to ask about dwarfism. I
absolutely love it when people ask questions, said Stevens.

Stevens said her experience has been that most people are closed off when it
comes to asking questions about her condition.

The people are really hesitant, like sometimes they are like, Is it okay if I ask you a
personal question? Im like, there are no personal questions here just, yes, its
fine. Stevens said that people do not always know what is going on, so they should
just ask.

Another misconception often takes place in how to help those with dwarfism: what
they need to do and not do. Stevens said to not be afraid to ask questions and offer
help. Stevens appreciates the help, but she said to try not to be overbearing.

I dont even really think of myself as disabled even though other people kind of do,
said Stevens.

Within the dwarf community, opinions vary about whether dwarfism is a
disability, although, according to LPA, it is recognized as a condition under the
Americans with Disabilities Act.

Support for dwarfism

Programs and services for dwarfism are offered on several different levels, including
locally at the university and on a national level.

At BYU Idaho the Disability Services Department provides services for dwarfism
and other types of disabilities. Some of these services include transportation and
academic support.

Along with the Disability Services Department, BYU Idaho also has a Student
Activities Adaptive Service. According to BYU Idahos website, this service is a
committee of volunteer students who coordinate extracurricular activities and make
them accessible for those with disabilities. Although Stevens has not yet participated
in this program on campus, she has friends that have encouraged her to join.

On a national level, Little People of America is an organization for people of small
stature. Stevens said, They help people advocate for themselves and they provide a
lot of medical scholarships and ways for little people to network.

While Stevens participates in this organization, having a large family prevents them
from going to the conventions as they are held across the country. Stevens said that
it is expensive and not feasible.

Take Action on Campus

Nicki Warnick, the faculty advisor of both the Adaptive Services and Outdoor
Recreation on campus, said that the whole base of these two programs is to involve
those with disabilities.

We dont want students to have to figure out how they fit in we just want them to
feel involved and get involved, Warnick said.

The committee, which is made up of about 20 people, finds ways to make it possible
by planning and organizing activities, or by just providing the equipment needed to
attend already planned events. The school has obtained a good supply of equipment
over the last few years according to Warnick.

Warnick said that some of the activities this semester have been sled hockey,
fishing, goal ball, and wheelchair basketball.

Warnick also said that several other opportunities are available to students with
disabilities in areas such as: sports, talent, social, service, outdoor and wellness
through both programs.

While the committee that works on making these events possible is made up of
mostly therapeutic recreation majors, anyone can join, with or without a disability.


Warnick said, One of the quotes Ive gone by is Its better to be included than
secluded.
Adaptive Services
Committee:


Stevens said that BYU I students could help those with dwarfism by,
Anyone can join
treat[ing] people like people. Obviously we are not the same, and I dont want

it to be brushed under the rug.
Meets every

Tuesday at 4 p.m.

A lot of times people just kind of ignore it and Im like, dont ignore the
Manwaring Center
elephant in the room.
Rm 101

Stevens Future

Stevens said that dwarfism did not determine the career path she was taking.

I use to want to be a motivational speaker, I guess I still do, but [in a] different
way. I want to do child and family advocacy. Which is basically writing and
speaking to support the family on a national and international level. So, its really
exciting, Stevens said.

She understands the importance of family in todays world because of her family
relationships. I just know how important families and see how its being
disintegrated in society and I just feel like its an important cause. And if I can get
paid for something I am passionate about, why not?

Along with dedicating herself to school and continuing her education, Stevens is
passionate about music. She has been a member of the choir comprised mostly of
BYUI students called From The Heart located in Rexburg. Stevens also said she
enjoys meeting new people and getting to know them by doing chill things.

According to LPA, there is a continued commitment to educate society and the
medical community about dwarfism, as well as dispel commonly held myths.

We are productive members of society who must inform the world that, though we
face challenges, most of them are environmental (as with people with other
disabilities), and we value the opportunity to contribute a unique perspective to the
diversity of our society, said LPA.