November 1, 2012
By
Lissa Blake
Imagine having to play charades all day in order to get others to understand you.
That’s what life is like for Lydia Dawley, a sophomore at Decorah High School who suffers from cerebral palsy.
“It’s very frustrating,” said Dawley.
But although Dawley is confined to a wheelchair, she doesn’t let it get
her down – or even slow her down. Dawley is becoming an outspoken
advocate for persons with disabilities, presenting to college classes,
at political forums, symposiums and conventions.
“Making your
voice heard is only one part. The wheelchair doesn’t define me. It means
you have to do things differently, not that you can’t do things,” she
said.
Dawley recently returned from a trip to Des Moines,
where she was a special guest at the Midwest Association for Medical
Equipment Suppliers (MAMES).
Dawley, who dreams of someday
being a lead advocate for persons with disabilities, said she enjoyed
having the chance to meet Congressman Tom Latham.
“I feel so
honored … I was so interested in listening to what he was saying and
learning so much more about government and what I can do to help make a
difference for others. I have already started writing some letters,” she
said.
While Lydia is non-verbal, she is still cognitively on
target. She is able to “speak” through an augmentive communication
device which is attached to her wheelchair. The apparatus, available
through Talk to Me Technology, works two ways: first, there is a camera
attached to the screen. It zones in on the pupil of her eye, which she
can then use to point to letters on a keyboard. Second, she has a Blue
Tooth attachment on her wheelchair joystick.
“What is so cool
about this is it sends a light to the pupil of my eye. Without this, I
wouldn’t have the opportunity to speak in class or communicate with my
friends,” said Lydia.
While this method of communication is
relatively time-consuming, she has some preprogrammed phrases that help
her on a daily basis. When preparing a lengthy speech like the one she
gave at MAMES, she develops the text ahead of time, and is then able to
play her speech, which sounds like a computerized female voice.
“She has a business card that says ‘A teenager with a voice! Trying to close the gap,’” said her mother, Jacque.
In the speech she typically gives, Lydia explains how she was born with her umbilical chord wrapped twice around her neck.
“I wasn’t breathing and was brought back to life. So now you can tell people you met a dead person,” quips Lydia.
She explains that cerebral palsy is a non-progressive, non-curable
disease that she will have all her life. It results in a group of
chronic conditions which inhibit her body movements and muscle
coordination.
She credits her amazing drive and motivation to the support of her parents, Nathan and Jacque Dawley, of Bluffton.
“When I was 18 months old, a doctor tried to tell my parents they
needed to accept that I was disabled. My dad picked me up and walked out
of the room. Lucky for me, my parents have always listened to their gut
feeling. They’ve always given me a chance,” she said.
“If my
parents had listened to that doctor that day, I wouldn’t be here today
to talk to you. People believing in me gives me the feeling there’s
nothing I can’t do,” she said.
Early support: Dawley said because she is non-verbal, she had to learn to read at a very young age to be able to communicate.
“My preschool teacher, Beth Crawford, told my parents, “There is something in this girl’s head,” said Lydia.
“I learned early on to communicate in nontraditional ways, to make
friends, to get along in life. Interestingly enough, I witnessed some
amazing changes in other students. They realized that if a person who
can’t walk can do the things I was doing, everyone is capable if you
believe in them.”
No limits:
Dawley is active in 4-H and shows goats, sheep, horses and her dog at
the fair. She also gave her prepared advocacy speech through a
communication competition in 4-H.
At school, she recently
participated in speech competition. Her instructor, Amanda Huinker,
helped pave the way for her to utilize her assistive technology device
to excel at district competition, after which she moved on to state,
receiving No. 1 ratings from all the judges.
Huinker said she really enjoyed working with Lydia on her speech.
“The process of working with Lydia was such a positive one; I too grew
from the experience. She is an amazingly sweet girl who wants to make
her mark on the world just like everyone else, and she most definitely
does have the power to make a difference through her words; the fact
that her words come through the voice of a computer doesn’t change the
powerful message behind them – perhaps it even strengthens it,” said
Huinker.
In her spare time, Lydia works with families of
children with disabilities at Team Rehab in Decorah. In 2001, the
Dawleys traveled to Poland with therapist Lisa Krieg to learn about
Therasuit therapy, which is now available to patients in Decorah.
“Lydia talks to a lot of the patients who go there as an inspiration
for the patient and their parents, of how not to let obstacles get in
your way. They see what an inspiration Lydia is. How life doesn’t have
to stop because they have a disability,” said Jacque, who added she is
willing to help families get in touch with the companies who offer the
assistive technology her daughter uses.
So proud: Jacque said she and Nathan are so proud of Lydia and how she has become such a strong advocate.
She credits much of Lydia’s success to the Decorah School System.
“They were wonderful, helping us figure out how Lydia’s school days can
go, how to help her do the work. They know she’s capable. Like Beth
Crawford said: she gets it and you need to not let her stop,” she said.
“I feel very fortunate to live in this District and to have this school
system behind us. Many other students we meet from other districts and
other states don’t always have that support. Decorah is advanced in
their thinking and in their technology and in their willingness to put
the students’ needs first,” said Jacque.
What’s next? Lydia has been asked to attend several upcoming technology lobbying events.
She said after graduation, she hopes to go to college at the University
of Northern Iowa or in Washington, DC in order to work in speech
pathology or get into government.
“With a supportive family,
therapy and assistive technology, people with cerebral palsy can lead
productive lives … If given the right tools, they can offer so much to
society. I hope you will take time in your life to realize that everyone
is capable. Everyone has a voice,” she said.
