Los Gatos Weekly-Times Photograph by George Sakkestad Ashlee Gustason is working on her black belt in karate. She works out at Studio Kicks in Los Gatos. Sounds of Silence Eleven-year-old finds there's more than one way to make herself heard By Sandy Sims When Ashlee Gustason signed up for tae kwon do lessons at Studio Kicks karate school three years ago, she was a cute 8-year-old--but she was also strong-willed, and she became the only deaf student at the school. No one there knew sign language, and Ashlee didn't read lips. This presented a tough challenge for the teachers at the karate school, but for Ashlee challenge was nothing new. Trophies crowd the floor against her bedroom wall. They run the gamut for sports--soccer, softball, bowling, horseback-riding, swimming, karate. One is for Miss Spirit of the American Coed Pageant for Northern California, where Ashlee was the only deaf contestant. The forest of trophies is a manifestation of the spirit of a little girl who wants to do everything, who will take on any challenge, to the point sometimes of driving her adoptive mother nuts. Perhaps because life itself has foisted nothing but challenge on Ashlee since she was very small. At 18 months old, she developed meningitis and lost her hearing. Her father died when she was too young to remember him, and her mother, who struggled with her own problems, was unable to get Ashlee the services she needed. This left the young girl without a way to communicate with the hearing world in which she lived. She also suffered from (undiagnosed until she was 10) attention deficit disorder (ADD). As a result, Ashlee developed the only language that got through to those around her--pointing, kicking, hitting and scratching. Just before Ashlee's 5th birthday, the grandmother with whom she lived enrolled her in kindergarten at Oster Elementary school where the Santa Clara County Office of Education deaf program is housed. There Ashlee began to learn sign language and finally, her name. About that same time Ashlee was introduced to Gerilee Gustason, the director of the deaf and hard-of-hearing credential program at San Jose State University, and the only deaf person on the full-time faculty at SJSU. This relationship would open up a whole new life for Ashlee. "That little girl was so stubborn, but oh so cute," Gustason recalls. She connected immediately with Ashlee. Gustason, too, had lost her hearing to meningitis before she was finished with the first grade, making her the only deaf child in her small Nebraska town. She continued through school--mainstreamed at a time when mainstreaming was unheard of--and communicated through writing. However, because she couldn't hear herself speak, her speech deteriorated over time. Without training this was inevitable. Eventually, as it became more and more difficult to make herself understood, Gustason gave up talking altogether until one of her college professors encouraged speech lessons. She learned to sign even later when she worked at the American School for the Deaf in Connecticut. After Ashlee began visiting Gustason in her home, Ashlee's grandmother--also raising Ashlee's siblings--prevailed on Gustason to help. Gustason adopted Ashlee when the girl was 6. They maintained close contact with Ashlee's birth family, but Ashlee's life took on many new turns. Karate wasn't something Gustason had in mind for Ashlee. "We were at the Cats Festival in Los Gatos," Gustason explains. "Ashlee saw the Studio Kicks karate demonstration and signed to her mother, 'I want to do that.'" "At first, she just watched," Tim Dilbeck, the teacher who has been with Ashlee the longest, recalls. "She picks up the moves faster than the other kids." The difficulty with teaching Ashlee is explaining why and when to use particular moves. Dilbeck bought two books on signing. "Ashlee's mother helps with that, too," he explains. He has learned that much of signing includes facial expressions and eye contact. When Ashlee gets the giggles, he makes a serious face to get her back into control. For Dilbeck it has been like learning a foreign language. "I worried about giving her the wrong messages." After three years, they have pretty good communication, although Dilbeck says his signing is not that strong. They have even made up signs for various karate moves. Sounds are important in martial arts. They are integral to the concepts of intimidation, protection and power. There's the "kiap," which means energy off or shout. For this Ashlee had to learn to tighten her tummy and yell "ai yah." Dilbeck spent lots of one-on-one time with her to help her get this sound. "I don't know how we did that, but the sound is pretty close," he says. "Tim told me to yell real loud, and I always do what Tim says," Ashlee writes. Teaching her the breathing sound "chhhhh" was even harder. He explains that this sound is even hard for hearing students to get. He sat with Ashlee for hours working on the "ch" sound. "She's got it," he says. "Balance is a crucial, too," Dilbeck explains, "especially in tae kwon do. It takes a low stance and often on one leg." Because Ashlee's deafness affects her equilibrium, she's had to overcome that as well. "Ashlee's stubborn. She knows what she wants," Dilbeck explains. Which is partly why she does so well. This can be a problem with learning martial arts where the teacher never gives in. "It's actually good that she's that way," Dilbeck explains. "Otherwise, no one would know what she wants or needs." Communication is a central issue no matter what Ashlee takes on. When it came time for her to go to middle school last year, she had options. There's the School for the Deaf in Fremont and also the county program. But Ashlee wanted to mainstream into Fisher Middle School where she and her mother thought she would get a better education. It's been a gamble of sorts because Ashlee is the only deaf student, and Fisher's academic standards are high. "Interpreters for K-12 graders are scarce," Gustason says. Gustason arranged for three students from SJSU to divide up their time over the week and interpret for Ashlee. This has presented problems of inconsistency and is expensive. However, Ashlee brought home four As and a C-minus. She even worked at the student store where she had a sign that said, "Hi, I'm Ashlee. Just point to what you want." The grades may have slipped lately, Gustason cautions, because Ashlee has missed some school. Ashlee's birth mother died in October, and she took it hard. "I think she hoped that someday they would all be together again," Gustason explains. Ashlee is also experiencing the loneliness of being the only deaf student. She has no girls at school to sign with, or gossip with. But she likes playing sports with the boys. She was the only girl to try out for the wrestling team, but with all the hours she must spend on homework and with her karate classes, she didn't have the time. "Ashlee is a TV addict," Gustason says. (She reads the captions that are available to the deaf.) "[Mainstream] deaf students experience loneliness all the way through high school," Gustason explains. But when they get to college, this changes because there are more deaf students and more services available. CSU Northridge, for example, has a strong program and more than 200 deaf students. "She's a tough little cookie," Gustason says. "Ashlee is far more outgoing than I am and determined. She'll be fine." With Gustason as her adoptive mother, Ashlee has been thrust into an unusual middle territory, a controversial area. Like other deaf children, Ashlee has learned American Sign Language (ASL), which is actually a language all its own--similar to Chinese because it has no tenses, no articles, and its own idioms. With ASL as their first language, deaf students often have difficulty with English because they do not hear the tenses or words that have multiple meanings. In fact, when Gustason went to UC-Riverside, her advisor steered her away from majoring in English. "She told me deaf people have a hard time with English." But Gustason says, "If you tell me I can't do something, I will do everything I can to prove you wrong." She went on to earn bachelors and masters degrees in English, along with two other masters and a Ph.D. Gustason has joined with a group of hearing and deaf people to create Sign Exact English (SEE). "Many college-educated deaf people sign in English word order," Gustason explains. She has co-authored a book of Sign Exact English which, in part, adds endings that coincide with the tenses (ed, s, ing). However, SEE is stirring up a major controversy in Deaf Culture. According to Michele Jennings, interpreter for the deaf and the hearing, the Deaf Culture thinks that SEE is neither English or ASL and therefore confusing. "I hesitated to adopt Ashlee," Gustason explains, "because throughout 'deafdom' I am known as the 'SEE lady,' which could cause Ashlee problems in the deaf world. ... Ashlee is essentially bilingual in ASL and English," Gustason contends. Bill Drobkiewica, a deaf journalist in Medford, Ore., explains that the American Deaf Culture began in Martha's Vineyard after the American Revolution. A large number of genetically deaf there were politically and socially active. The culture continues today through schools for the deaf like the one in Fremont. Those who identify with the Deaf Culture feel they are a minority, like African Americans, with a language--ASL--and a culture of their own. They do not see themselves as handicapped, and they do not want the hearing world to "fix" them. This stance by the Deaf Culture involved Ashlee in an even hotter issue when, at age 7, she decided to get a cochlear implant. The implant is a device with electrodes that are surgically inserted into the patient's ear to bring sound to those deaf people whose auditory nerve is still intact. The goal is for implant users to learn to become oral and join the hearing world. However, the Deaf Culture is against implants for those who've never had language, and they are very vocal about it. The television series ER is playing out the controversy with one of the doctors facing the implant decision for his deaf baby. When Ashlee decided to go for the surgery, she received two letters, sent anonymously to her at school from members of the Deaf Culture. "They didn't want me to see the letters," Gustason says. "I was angry that they would send letters like that to a child in school." The letters warned Ashlee not to get the implant because it wouldn't work. Gustason read the letters to Ashlee and talked about the fact that some deaf people don't want to hear. Deaf Culture proponents not only believe they are not disabled, and deaf children don't need "fixing," but they are concerned that those children who receive implants do not really gain enough hearing and speech to make it worthwhile, and then the implantee winds up caught between the deaf world and the hearing world--a lonely place. Ashlee still wanted to get the implants. "I wanted to know what hearing sounds was like," Ashlee recalls. This process takes amazing dedication. While the device allows implantees to hear sound, they must learn to listen, that is to differentiate sounds. It takes time for the brain to learn to recognize different sounds, and for the implantee to learn to tune out some sounds. "When I first got my implant," Darlene Fragale, the patients' services coordinator for House Ear Clinic in Los Angles, "what I heard was a blast of sound. I had to concentrate with everything I had to make out different words when I was on the phone. Now I can listen and work on the computer at the same time." Fragale lost her hearing in her 40s and was deaf for four years before she got her first implant 19 years ago. The least controversial people to implant and perhaps the most successful are those who lost their hearing after having language. During Fragale's telephone interview with the Los Gatos Weekly-Times, there was no evidence of a hearing or a speech problem. "At first Ashlee's implant seemed to be going well," Gustason recalls. Then it began to hurt her ear. "I don't use it any more," Ashlee admits. Gustason says the original processor (the outside device) malfunctioned. The volume got frozen on high and the tones became painful. The processor was fixed, and after not using it for two years, Ashlee tried it for summer school at Fisher but says it didn't work. "Testing this summer showed her ability to use it had deteriorated. I just don't push it," Gustason says. Like parents everywhere, she knows it's better sometimes to back off. Ashlee, a typical, independent-minded 11-year-old, swishes her hands through the air with as much silent noise as possible and sends a glare toward her mother. "She's telling me to let her handle the interview," Gustason says laughing. After seeing an article in the newspaper about some karate students, Ashlee told her mother she thought she'd make a good story. And with the reporter sitting in their living room, she wants to make sure it's "her" interview. The two live in a cozy home in the Los Gatos mountains where flashing lights signal the doorbell or the phone, where daughter and mother communicate in sign language over homework, events of the day and those difficult problems they both face. In the meantime, Ashlee is preparing take the test for her black belt in karate. And she's at it again, just signed up for ice hockey classes, charm classes and pageant training. [ Back to Contents Page | Los Gatos Weekly-Times Home Page | Archives ] This article appeared in the Los Gatos Weekly-Times, January 13, 1999. ©1999 Metro Publishing, Inc. All rights reserved.