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 17^th 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, “That’s perfect because I can’t talk.”

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 “spoke” with great ease because he did not have to “hear” my voice. The interview was amazing for me, having my first “normal” 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 “pity party” 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 Nicole’s 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 Nicole’s 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. 1^st 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 “cosmetic.” 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.