Sunday, August 13, 2000
Woman has vision for herself, deaf/blind group
When Lynn Jansen was a 3-year-old nursery school student at Cincinnati Speech and Hearing, she received her first hearing aids. By the time she was a student at Seton High School, she knew she had a vision problem, too. She would be in her 30sbefore the name of the hereditary condition affecting three of her mother's nine children was known to her: Usher Syndrome.
Three percent to 6 percent of children born with hearing impairments can be expected to have Usher Syndrome, a condition that involves both hearing loss and retinitis pigmentosa, a progressive eye disease that often leads to blindness. Three types of Usher Syndrome have been identified. Ms. Jansen says she is one of the lucky ones: her hearing loss has stabilized, her vision loss is progressing more slowly than some, and she has no balance difficulties.
Seven years ago, Ms. Jansen joined a group that meets quarterly in Columbus. Through involvement with the Ohio Deaf-Blind Outreach Program, she and her friend, Nellie Pohlmeyer, another Cincinnatian with Usher Syndrome, found themselves in the role of key organizers for a national conference held recently in Columbus.
The AADB [American Association of Deaf-Blind] is for people with all kinds of hearing and vision impairments, Ms. Jansen explains. I'm low-vision/hard of hearing. Some are totally deaf, totally blind. Some are deaf and legally blind. All of us are different.
As workshop coordinator, Ms. Jansen put in eight- to 10-hour days for several months. Martial arts gold medalist Tokey Hill led six sessions of deaf-blind delegates in self-defense lessons. Massage therapists were on hand for relieving the tension of tactile interpreting for both deaf-blind consumers and their interpreters. Sessions also included training guide dogs for deaf-blind individuals, using the Internet to find a job and training qualified interpreters.
Organizing any conference is hard work, but when all involved have some level of vision and/or hearing impairment, flexibility is the operative word. To set up workshops, Ms. Jansen communicated via telephone (she is part of what's called the deaf-blind speaking group), TTY, e-mail, conventional mail, and deaf relay services (in which an operator types spoken conversation to a deaf person, and speaks typed comments back to the one able to hear.)
Lynn Jansen and Nellie Pohlmeyer take these ways of talking to people for granted. At the conference, communication occurs in almost as many forms as there are people. Those who have sufficient vision read lips, follow the motions of a sign language interpreter, or pull a chair in close range to read the verbatim transcript of discussion being typed (in 2-inch characters) on video monitors. Then, there are the clusters of people around the room with limited vision, huddled close to see an interpreter who is repeating the words of a presenter on stage and, finally, the many pairs of one on one, in which tactile interpreters are signing directly into the hands of participants who are totally deaf-blind.
Ms. Jansen takes the challenge in stride. The Cheviot single mother of three has been chasing challenges all her life. Five years ago, she decided she was too smart to be an accounting clerk all her life and returned to college. On May 13, she graduated with an accounting degree from the College of Mount St. Joseph where she says accommodations to students with disabilities are magnificent. She'll be job hunting now, but her work with AADB is far from over.
Ms. Jansen and Mrs. Pohlmeyer plan to begin a deaf-blind social group in Cincinnati. Many people who have some sight or some hearing don't realize that they could benefit by identifying themselves as deaf-blind. To better communicate with their signing friends, the two women have arranged an accommodation in an ASL class at Cincinnati State: a second interpreter repeats up close for them the signs being taught by the teacher they are unable to see.
Adaptation and imagination are key to living full lives with disabilities. Ms. Jansen demonstrates that in raising her teen-agers, going to school, organizing. Ms. Pohlmeyer says it all when she explains that her new job, at 56, in working in her husband's Backstage Deli downtown is to run the cash register and flirt!
Cincinnati writer Deborah Kendrick is a nationally recognized advocate for people with disabilities. Write her at Cincinnati Enquirer, Tempo, 312 Elm St., Cincinnati 45202. E-mail:firstname.lastname@example.org.
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