Stone-Hayes
Gives a Hand Up
By Karen
S. Lynch
The
Zephyr, Galesburg
July
29, 2007
Last Thursday I had one of my most
amazing journalism experiences in the past three years, including appearances
with several Congressmen and taking photographs up close and personal of former
President Bill Clinton. I visited Stone-Hayes Center for Independent Living
during an open house. A large group of people gathered inside the center,
located at 39 North Prairie Street, on the 17th anniversary of ADA
(Americans with Disability Act).
Before any one noticed my press
badge, I received an introduction to Donna Giles, an independent living
advocate, seated in a motorized wheelchair. Giles said she wanted me to meet
someone, but I needed to look at his face when I spoke because he was hearing
impaired and reads lips. I said in a soft, broken voice, ÒThatÕs perfect
because I canÕt talk.Ó
For those who do not know me
personally, I have a very rare speech disability called Abductor Spasmodic
Dysphonia. My voice is not much more than a whisper at best and tires quickly
to unrecognizable sounds. Of approximately 55,000 cases of identified dysphonia
cases in the United States only an estimated 7,000 cases are the abductor type,
more resistant to treatment options to alleviate symptoms. There is no real
cure.
A smiling young man, Shawn Steele
warmly introduced himself while shaking my hand.
The
hearing-impaired Steele and I ÒspokeÓ with great ease because he did not have
to ÒhearÓ my voice. The interview was amazing for me, having my first ÒnormalÓ conversation
in nearly four years. Steele reads lips extremely well. I did not think until
after I had left, I could have just moved my lips, without the tremendous
effort it takes to force my vocal chords to make any sounds. Steele laughed when
I told him I learned he understood my voice better than people who hear
un-aided.
Steele was a member of the legislative
intern class this year and was able to watch the Illinois Legislature and
Supreme Court working during a visit. The six-month program covers laws
protecting the rights of people with disabilities. Steele also is bipolar and
has post-traumatic stress disorder (PTSD) - the same disorder many Veterans of
the war in Iraq are now experiencing and our government is trying to blame on
the victims.
I saw people who were totally
deaf or hearing-impaired, rapidly signing to each other with American Sign
Language, followed by smiles and laugher. A few people were seated in
wheelchairs or using canes. An empty wheelchair was offered to visitors to
experience the challenges they face in life that we take for granted. This was
not a Òpity partyÓ for the disabled but a celebration of living a meaningful
and productive life with a disability.
Nicole Vallero was sitting in an
office chair. A yellow lab named Benjamin, lying quietly at her feet was wearing
a harness with a handle. Nicole had just received Benjamin that day, her second
seeing-eye dog. She was talking and laughing with Michelle Kroll, President of
the Board of Stone-Hayes. I asked Nicole if I could take their picture for the
newspaper. With an infectious laugh, the young woman joked with Benjamin that
he was already a star getting his photograph taken.
I asked NicoleÕs permission if I
could pet Benjamin. Service dogs of any type are trained the harness means they
are working and cannot play. Benjamin seemed to welcome the brief break while I
was petting him, telling him to take good care of Nicole. The young, energetic lab
offered to jump up and give me a kiss. The dog was quickly corrected by NicoleÕs
tug at his harness, a reminder break was over and it was time to go back to
work. After my interview, Nicole extended her hand to thank me and went back to
visiting. Benjamin once again was lying calmly on the floor beside her.
While at the center, I saw only smiles, warmly welcomed by
everyone. The room filled with laughter. Every one was enjoying food
refreshments, cake and punch. Literature and visual displays explained the ADA Act.
Various stations offered the public the opportunity to see what the center has
to offer. I learned through my own experience that any one could suddenly
develop a disability. The rate of those affected by a disability increases with
age.
Organizations like Stone-Hayes are ready to offer a hand up
– not just a hand out, even though the center has information pamphlets
available as well. The center offers information and referrals to over 350
persons per year and serves three counties: Knox, Warren, and Henderson.
Monmouth also has an office at 614 N. 1st Street. The executive
director, Catherine Holland is dedicated to offering all the help she can to
disabled persons. Holland has the full support of the advocacy board, but
admits there are limits to any organization. They are working hard to let the
public know the services they offer.
Shawn Steele is the Board Chairman at
Stone-Hayes. His recent training has helped him with ideas that go beyond
audible street light signals Braille in elevators or on office doors and
handicap parking. He told me violators do not often receive citations for
parking illegally in handicap spaces. Steele told me one young woman was paged
at a local grocery store because she was preventing someone in a wheelchair
from exiting a vehicle. The illegally parked driver complained she was only
going to be in the store a few minutes. This type of apathy angers him,
especially when Steele said there is an overall shortage of handicap parking in
Galesburg.
Steele would like to see closed
captioning on the televised City Council meetings for the hearing impaired. He is
most disturbed by employers who discriminate against the disabled, something he
says is happening with increasing frequency. Steele wears hearing aids in an
attempt to assist his hearing disability. He said Medicare or Medicaid does not
cover the expensive devices. Even though hearing aids are a long accepted
medical device, necessary for those with hearing losses, are still considered
by Social Security to be Òcosmetic.Ó Despite the costs, there is something very
wrong with that.
Steele is correct about the
misunderstanding and discrimination against those with disabilities. I had an
occasion where I had a broken bone in my heel and was on crutches for months. A
visit to the mall or grocery store was nearly impossible on crutches. I used
available wheelchairs but found most aisle were too narrow, crowded with
obstacles. Items I wanted to buy were too high on the shelf to reach. I often
could not find any one to assist me, even when I was brave enough to ask a
stranger, who often ignored my existence. I learned to use a crutch, carefully
nudging items from above my head. I became a good catcher. Perhaps it is
easiest to understand the challenges that face the disabled by walking in their
shoes, or in this case rolling on their wheels.
I spoke to Shawn Steele about
programs I use that could assist him that he was unaware existed. He had not
qualified for a TTY device that provides a relay operator-assisted phone call,
provided free by the state and telephone company. The same service is available
online from any computer without the need for special equipment, or even a
telephone for those who have a high-speed internet connection. I also shared
information on a program I have that speaks with a natural-sounding human voice
anything typed or pasted into the program. Steele was very grateful for the
shared information. That is what Stone-Hayes is all about, sharing information
to help the disabled function as normally as possible.