Today's blog is a combination
of things. It is partially comprised of an article that I shared on Facebook
about an acquaintance I knew in North Carolina. However, the message of the
article is more potent than one individual girl.
The article below is about
Hope Johnson, a 32-year-old with the same type of Cerebral Palsy that I have.
She is a shining example of how very few people with disabilities ignore their
disability and strive for their full potential. Hope's message is that our
obstacles, but what we do to overcome them, shall not define us. Although this
particular piece of writing is not entirely my own, I felt it was crucial to
share here because it embodies the message of The Voiceless Minority Blog in
that one should fear nothing and regret less even if society tells them to worry
about the obstacles that they have been given at the start of this journey
called life.
I thank my friend Angela
Swanson for sharing this on Facebook, and everyone should check out Hope's
blog.
"Hope is the thing with feathers that perches in the soul And sings the
tune without the words And never stops at all."
This Emily Dickinson quote headlines
the blog of a miraculous Messiah College senior, Hope
Johnson, who was born with athetoid cerebral palsy
. Cerebral palsy is a physical disability that affects
movement, coordination, balance, and posture and is caused by an injury to the
brain or by unusual brain development.
Because of cerebral palsy's unrelenting
grip, Hope, 32, is without the use of her arms, legs, and voice. She
"speaks" with her left foot, painstakingly typing out words with only
her big toe, on a specially designed keyboard at the base of her adopted
computer workstation.
Worldwide, 17 million people live
with cerebral palsy, and another 350 million
are closely connected to a child or adult with CP. It is the most common
physical disability in childhood, according to UCP Central Pennsylvania, which is
marking its 60-year history of serving children, youth, adults, and seniors not
only with CP but with autism, traumatic brain injury, stroke, and other
conditions and diagnoses.
"I think what
saddens me the most is people's attitude about individuals with disabilities.
They assume that you can't." – Hope Johnson
Although Hope cannot "speak"
in the traditional sense, she has a powerful voice and an inspiring message,
which she's eager to share on her blog, aptly entitled "A The journey of
Hope."
Dickinson's "hope" quotes
illuminate and inspires her life.
"Her name so fits her," said
Lynda Bowen, UCP Marketing and Communications Coordinator, and Hope's
supervisor during her two internships at UCP.
Hope has stylishly short-cropped hair,
expressive eyes, and a ready smile. She goes shoeless so that her polished
toe can type out her thoughts. Her writings display an unshakeable belief that
she is not disabled, only "differently-abled" and that she will not
"become my Cerebral Palsy
."
She first started college on a North
Carolina campus lauded as handicapped accessible. But she soon learned a
painful lesson: "Accessibility does not mean acceptance."
Now an English major, with a writing
emphasis, at Messiah, Hope is proving that physical limits do not restrict the
flow of creativity and intellect. She has lived on her own on-campus since
2007, with modifications added by the college to allow her to live
independently.
Ann Beasom, her Community Integration Specialist,
advocate, and friend, accompanies Hope to class and serves as her "voice"
on campus. She does this by sounding out the words Hope types on a simple
toeboard in a black binder that resembles a Scrabble game board.
Hope is on track to graduate from
Messiah in May of 2014. When she does, she will be their first non-ambulatory,
nonverbal graduate. It will have taken her ten years to earn that coveted
diploma. Will she cry when she gets her certificate? "Of course!" she
types without hesitation.
Bowen said Hope is destined to draw a
standing ovation, especially from an admiring faculty.
Samuel Smith, chairman of Messiah
College's English department and one of Hope's professors, wrote in a letter of
recommendation that "Hope is one of the most inspiring individuals I have
encountered in my 20+ year teaching career. A solid work ethic
sustained her excellent work in my class.
"But perhaps just as important as
her abilities and skills, Hope approaches all her work with passionate care,"
Smith wrote. "She has an integrity of character — a strong self of herself
as a moral and responsible self — that all of us can take for inspiration."
Hope's long-range career goal is to advocate
for people with disabilities and work as a professional writer. She got a taste
of what it would be like to realize those goals during her summers as an intern
for UCP's Development Department.
Hope is among the success stories to be
shared as UCP celebrated its 60th anniversary in 2013.
"I try to live my life without
limits," Hope says, clearly modeling the organization's motto of "life
without limits for people with disabilities." She dazzled everyone around
her during her internships with UCP, curating content for their social media,
critiquing the literature on CP, and writing original content for their
newsletter.
She even developed and launched a
notecard fundraiser that has raised $1,500 for the organization that helped her
unleash her full potential.
Bowen marvels at the fact that Hope's
work is virtually error-free.
"Her stuff comes through, and
you'd never know what it takes to do this," Bowen said. Content, grammar,
and punctuation are all "flawless," providing little proof of the
struggle behind the creation.
UCP statistics show that the
unemployment rate for adults with disabilities is 71 percent, yet the vast
majority of these unemployed adults want to work.
Hope said her grandparents taught her
to type. Although they have both passed away, she is quick to acknowledge the
remarkable impact on her life. Tears fill her eyes as she types on the
toeboard, "They're looking down on me, smiling."
But she does not dwell on the grief.
"I think what saddens me the most
is people's attitude about individuals with disabilities," she said.
"They just assume that you can't."
What would she tell those
non-believers? "I think I show more than tell."
But then she taps out this jewel:
"You never know what's inside."
Her joys in life include writing,
particularly poetry, and spending time at Bethany Beach, Delaware, where she
rolls a chair right up to the water's foamy edge. She dreams of traveling to
France, Italy, and England someday but knows that accessibility issues will
complicate her movements.
It is her nature to be "pleasant,
polite and upbeat," she said, acknowledging that "Sometimes I
overcompensate." One of her biggest challenges, she said, is fatigue. It
takes so much effort to type, painstakingly communicating, letter by letter.
In one of her most poignant poems, she
writes how she is not physically limited in her nighttime dreams. She
experiences the miracle of having no physical restriction. "One cannot
describe the exhilaration that one feels flying. It is as if the soul is free
from any bondage it encounters in life."
Yes, her professors have taught her,
but she has taught them, too: "Anything is possible if you have an open
mind."
She has begun work on a memoir, and one
of her favorite professors has encouraged her to try to get it published.
On her blog, she types, "I hold power to captivate just
by the pressure of my toe striking each key, and I thank my audience for
putting all of this at my 'feet.'"
Power
resides in even the smallest of
people – and words. Like "hope."
At a glance
• WHAT: UCP of Central Pennsylvania
celebrates 60 years of service to people of all abilities.
• WHEN: Reception at 6 p.m.
Nov. 21 and dinner at 7.
• WHERE: West Shore
Country Club, 100 Brentwater Road, East Pennsboro Township.
• INFO: Anyone who has been helped by UCP
is encouraged to share their story in words or photographs. Please check the
website at www.ucpcentralpa.org for
additional details. For more information, call 717-975-0611 or email
Janeen Latin at jlatin@ucpcentralpa.org.
I got the original article from
pennlive.com. If you would like to hear more about the UCP, then go to http://www.ucpcentralpa.org/. Leonard
Goldenson founded the UCP organization. Leonard Goldenson was a true pioneer in
that UCP would be the first "disability to utilize telethons" for
fundraising. Goldenson would eventually become the head of the American
Broadcasting network ABC.
The UCP organization provides various
services with 85% of its 750 million dollar budget towards programs ranging
from education services to travel expenses, parenting, and family and support.
There are more than 100 affiliates of the UCP all over the United States with
Canada and Australia. UCP does not provide a one-size-fits-all type of service.
It typically tailors its services to its locations and needs.
Overall, the UCP and the message of
young Hope Johnson reiterate that disability should not define a person, but
rather a person should define themselves. Disability should only be a part of
that definition.
