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Spotlight on Hearing Loss in Mongolia

Lynn WoolseyLynn Woolsey, director of UT Knoxville's Center on Deafness, visited Ulaanbaatar, Mongolia, this summer on a Ready for the World grant to help parents and caregivers of children with disabilities.

Woolsey, who has severe hearing loss, spoke at the first meeting of the Mongolian Association of the Deaf, met with special education teachers and filmed two short television programs directed toward parents and caregivers.

The Center on Deafness is part of the Theory and Practice in Teacher Education Department and also is affiliated with the Educational Psychology and Counseling Department in the College of Education, Health and Human Sciences.

A Long Way

Mongolia is a long way from the U.S. -- both in distance and in how people with disabilities are treated, Woolsey said.

"In terms of education, particularly the education of children with disabilities and their families, it was a journey back in time and back into the days when children with disabilities were put out onto the street or sold as slaves."

Woolsey says she doesn't feel handicapped when she is in Knoxville, but going to Mongolia made her feel different.

"I went to Mongolia thinking I would share and teach, but as it turns out my presence there was more of a model of what a person with a disability could accomplish. I am a person with a disability. I have a severe hearing loss. I went to Mongolia alone, without an interpreter to teach, to share and to learn. I went to Mongolia to connect with teachers and parents. The parents -- I found. The teachers -- don’t exist," she said.

"In Mongolia, the teachers of students with disabilities receive a degree in “Defectology.” They do not call themselves teachers. They are defectologists, and a few of them confided in me that the students they serve are really 'unteachable and typically untrainable.' Students with disabilities come to the capital city and attend one of the four schools for the handicapped. Everyone is dismissed at age 18. They typically return to their homes -- their gers --and are cared for by their families. They do not work. They are not wanted in the workplace. They are often not wanted at home. Ulaanbaatar is home to many orphans with disabilities."

Woolsey recalled one mother who told her, "I regret I gave birth to this child. Genetically, both of us do not have any disabled relatives. Who's fault is it having this kind of child? When the siblings hate him it is very difficult for me."

Another parent shared her darkest fear with Woolsey: "Sometime when I think about ‘How he will live after me?’ I want to take him when I die."

"Look at Me"

During one of her presentations, a man with severe physical disabilities and a hearing loss asked to speak.

"He had disheveled hair, scuffed shoes, and clothes that didn’t match and hung on him like clothes hang on a line. He dragged one of his feet as he slowly made his way to the front of the room. Orgdahl said he suffered from a fever when he was a baby. He was left with severe physical impairment and a hearing loss. His speech was fuzzy and slurred but his message struck the hearts of every defectologist in the room."

"He stood silently for a moment and said, 'Look at me.'

"The defectologists looked anywhere but at him, so he said more sternly, 'Look at me! I am here … to tell you that we are not disposable. I am not disposable. I am the editor of a newspaper. Did you know that? No, you did not.

"When I tried to climb the four flights of stairs none of you helped me …. It was a foreigner who caught my eye and asked me if I needed his help. It was a foreign man -- not one of you -- our teachers.

"I want to tell you our children can succeed. I was a lucky boy. My mother, before she died when I was 16, told me, 'Orgdahl do not listen to anyone who wants to prevent your success. Your mind is good. You have a crippled body but your mind is not crippled. You are not a disgrace. You are my pride.' I say that to myself every day. On the evening of my mother’s funeral I stopped to buy something to eat. The man at the curbside food station told me, 'You are not worthy of my spit. Go fight with the dogs for your food.'"

Woolsey also met with eight mothers of children with disabilities.

"They told me of their embarrassment and disgrace and sometimes, their disgust. Their culture hasn’t accepted individuals with disabilities. To have a child with a disability is a terrible disgrace, and it brings shame to the family. I was able to talk with mothers at the first ever "Mongolian Mothers' Group for Children with Defects" (MMGCD)," she said.

"I think I was a bit of a surprise to them. I couldn’t hear. Even if I could hear, I don’t know Mongolian, but there is little to compare with a bond from one mother to another mother. I am a mother and a grandmother. I am disabled. My hearing loss is not a disgrace to my family," she said.

"I learned three important lessons in Ulaanbaatar. Defects are in the eye of the beholder but if enough people see a person that way, the person can easily become defective. People with disabilities in Mongolia don’t experience a glass ceiling. Their ceiling is one made from shards of stalagtite. It cuts and burns, and is nearly impenetrable," she said.

Woolsey left Ulaanbaatar with a new motto developed by the group of participants at the first Mongolian Association of the Deaf meeting. In English it translates to, "I am not broken -- so there!"

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