Monday, May 17, 1998
Laws can hinder, not protect
BY DEBORAH KENDRICK
The Cincinnati Enquirer
CHARLESTON, W. VA.- Since 1975, we have had laws protecting the rights of kids and adults with disabilities, and new ones are being added or amended all the time. Understanding those laws to make the system work for you, though, is a challenge under the best conditions.
Here, in West Virginia, I am gaining a whole new perspective on how convoluted our system can become. I am also astonished at the irrepressible spirits of some of this state's rural citizens.
Despite the Internet and the World Wide Web, information seems to be taking longer to get here. Teachers and parents, students and counselors, occupational therapists and work evaluators - they have come here to learn more about technology that assists people with disabilities.
Strange interpretation
We are talking about product basics and the most efficient ways to get needed equipment and the training to use it, but I am captivated by the people and their stories. Laws have taken some peculiar turns before being interpreted in some places here.
One example is Nicholas - a non-stop talking, fidgeting 9-year-old who is blind and who is eager to talk the presenter's head off with what secrets he has learned about a specific piece of technical equipment.
The Individuals with Disabilities Education Act (IDEA, formerly the Handicapped Children's Act) has guaranteed children in school since 1975 an equal and appropriate education. But Nicholas is being home-schooled, his mother tells me, because his school interpreted that law to mean that one hour of education weekly would be sufficient.
At 9, he is bright and articulate. He reads, writes and has become his mother's full-time job. The only way she found to make the system work for her son was to ignore it.
Then there's Lucy, the teacher who has traveled from school to school for 40 years, teaching kids who are blind or visually impaired how to read Braille and use magnifying devices, and teaching herself an impressive amount about Braille and speech technology along the way.
Lucy sits with her former student, Diane, whose child now requires Lucy's services. Lucy's method - the forge ahead, fearless approach - has served her students well.
Apparently always teaching, she chides Diane between sessions for not wearing her magnifying lens. ''She thinks it makes her look like a geek hangin' round her neck,'' she says of her now thirtysomething friend.
A sign-language interpreter - who happens to be a wheelchair user - conveys with her hands every word we are speaking to Wendy, a deaf college girl in the front row.
Wendy, however, is disinterested. It is her mother who shares their David and Goliath saga with the rest of us. Wendy has hearing aids, learning disabilities, and other hidden disabilities that make studying an arduous affair, her mother tells us.
Talking for, about and around this 19-year-old daughter as though she were absent, Wendy's mother wants to know why vocational rehabilitation will pay for one hearing aid, but not two, and why Social Security says that Wendy, if she wants her SSI checks, has to take a job as a janitor.
Hungry for information
It is crazy that systems designed to enable people with disabilities to live and work and go to school under equitable circumstances have gotten so turned around in some places.
The noteworthy part of it, though, is how these people - most of them isolated with their difficult issues and impenetrable systems - are indefatigable. They scribble phone numbers and names hungrily and charge up for the next round of fighting for their own or their children's rights.
No matter how tortuous our laws may become, these people are evidence that there are survivors, people who will find their way to the place where things are, if not fair, at least predictable.
Deborah Kendrick, a Cincinnati free-lance writer, is a nationally recognized advocate for people with disabilities. Write: Deborah Kendrick, Cincinnati Enquirer, 312 Elm St., Cincinnati 45202; e-mail: 71340.473@compuserve.com.
KENDRICK ARCHIVE
