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Spotlight on the Deaf-Blind Community

A Woman of Many Talents -- An Interview with Karen Bailey

Karen Bailey and Her Guide Dog

Karen Bailey with her guide dog, Piston

Thursday, March 19, 2009

By Elizabeth Spiers

"I've raised five children," Karen Bailey said. "If I can do that, I can do anything."

Karen has definitely taken this to heart. She is now a PhD student in Clinical Psychology at Gallaudet University in Washington, DC-the first deaf-blind student to enter this program. She is also president of the Metropolitan Washington Association of the Deaf-Blind (MWADB), a local deaf-blind group in the Washington, DC area.

Karen, who has Usher Syndrome Type 3, is now in her second year at Gallaudet. After graduation, she hopes to set up training programs that focus on the needs of deaf-blind people in the United States, and also perform program assessment and evaluation for those programs. She is also thinking about teaching at the university level.

"There are no comprehensive mental health programs for deaf-blind people," she mentioned. "We have programs for deaf people, and people with other disabilities, but nothing specifically for deaf-blind people. I hope to train counselors, psychologists and other mental health professionals, and to develop curricula for that purpose."

Karen has an especially unique perspective on services for deaf-blind people. She has lived all over the world-London in her childhood, Sweden, Spain, and currently, the United States. She calls London her home town. However, she said she feels more rooted in America and its culture now, and especially within the deaf-blind community here.

"Sweden offers probably the best services to deaf-blind people out of all the countries where I've lived. But the population is small and people don't have a lot of choices when they are looking for services they need. Also, because the population is small, there is not as much opportunity to develop a diverse deaf-blind culture there. Here in the United States, the deaf-blind community is large and we have a strong sense of culture and community. But there needs to be more specialized services around the country, especially SSP services."

Karen is also discovering this for herself at Gallaudet. "The PhD program has good services and a good perspective for deaf students. But there is nothing really about deaf-blind people in the curriculum. I am exposing and educating everyone there about my needs and the needs of the deaf-blind people in general. Also, Gallaudet has some great research on deafness and deaf people, but almost none on deaf-blind people. I hope to gather more research about that population."

Karen grew up in an interesting family. Her grandmother was deaf and was from Spain. She learned Spanish Sign Language from her. Later, in England, she learned British Sign Language (BSL). "I am fluent in Spanish Sign Language. I can sign BSL, but am not skilled." In America, she first learned ASL by studying the VISTA curriculum in classes, and then through interacting with ASL users.

Karen's father is blind from retinitis pigmentosa. Also, she has a brother who is blind. Both are hearing. Karen herself was born with normal vision in her left eye and hearing. She was born with a tumor on her optic nerve and, despite surgery as an infant, has been blind in her right eye all of her life. She began to lose her hearing in high school. She discovered that she had to sit up front and look directly at the teacher to be able to participate in the class.

Karen worked as a counselor for children, families, and older adults while raising her five children. She taught classes in self-advocacy and provided individual therapy for adults and children. In addition, she also worked with families and senior adults. She ran adoption classes, made home visits, and assisted families in educating their children.

Once her children finished school and left home, she decided to pursue a graduate degree (she had received her bachelor's degree from Evergreen State College in Washington State). She picked Gallaudet because she wanted to get more clinical expertise, study with other professionals in the field, and be able to do research in a university setting. "I want to finish my degree and start working quickly," she said. "I don't have that many years to pursue my career. Most of my classmates are in their early to mid-twenties, and I am considerably older than that."

Karen has found other challenges during her studies. "I visited a hospital the other day," she said. "I discovered one of the long term patients has Usher Syndrome. He hasn't seen an audiologist in 25 years. He said he used to wear hearing aids but they are broken and he hasn't worn hearing aids in years. I think most of the staff didn't realize that this causes huge communication difficulties for the patient and possibly worsens his other symptoms as well.

"I also visited a school where deaf-blind children with developmental disabilities are being taught. I spent time with a few of them and found out that some are not really developmentally delayed. They just don't have a good communication system in place. Many teachers and staff simply don't know how to work with them. That is another reason why I want to set up training programs specifically to meet the needs of people like them."

Karen is also looking ahead to the future. "I sense that Gallaudet is changing its direction now. I suspect that in the future we may get a lot of veterans who are experiencing hearing and/or vision loss as a result of the war. I hope to work with veterans who have hearing and vision loss, as well as senior adults and deaf-blind people who grew up in the deaf community."