The back of my pajama-clad roommate greets me from the kitchen as I shuffle my feet on our hand-me-down doormat. It’s after 9 p.m. and the apartment is quiet for a Tuesday night.
“Hey, Robbie,” I say, closing the door.
She’s rifling through the fridge and doesn’t turn around, so I walk toward the hall. I’ll talk to her when we’re face-to-face. But as I pass the kitchen she turns, and my sudden presence catches her by surprise.
She points to her wet red hair.
“Sorry, I don’t have my ears in.”
We exchange a thumbs up and a clearly articulated, “Goodnight,” then part ways.
Robin Baker entered the world Jan. 14, 1992, and for nine months she got to know it as a silent place. She was one of the 2 or 3 in every 1,000 babies born deaf, and part of the 90 percent of those born to hearing parents.
Her father, University of Idaho Provost Doug Baker, remembers noticing his youngest daughter’s hearing impairment when she was 7 or 8 months old.
“I went into her room and made a loud noise — she didn’t even flinch,” he said.
Robin had moderate-to-severe hearing loss in one ear and severe-to-profound loss in the other. She was fitted for her first hearing aid at 9 months old and a second one a couple of months later. Baker and his wife, Dana Stover of UI’s business college, began speaking and reading to Robin, trying to make up for lost time in essential language development. She entered special education after her first birthday, but the next two years of intensive speech therapy were nearly fruitless.
“She just wasn’t learning to speak,” Baker said. “At 3 she had almost no language — she had sign language, but she didn’t have any oral language.”
Baker consulted their audiologist, who confirmed Robin had enough hearing to pick up spoken English, but she was learning American Sign Language instead.
“This is a fork in the road for Robin,” Baker said. “She’s either going to be a signing kid or she’s going to be an oral kid.”
Parents must choose how children with hearing impairments will communicate for the rest of their life, and it all starts with schooling. Baker called the three options “camps — they’re almost cults.”
Children who attend state-run schools for the deaf learn ASL and subscribe to deaf culture. Those enrolled in mainstream public schools often use technological classroom accommodations and function as hearing students. Special education programs offer Total Communication — a mash-up of sign and oral education that simultaneously delivers lessons in ASL and spoken English.
“Each believes deeply in what they’re doing and each cares a great deal about their kids and each feels theirs is the right answer,” Baker said.
Being the academics they are, Robin’s parents went to work studying each path’s potential effect on their toddler’s future. Following a careful review of the available literature, the Baker family relocated to Vancouver, Wash., and Robin entered the Tucker-Maxon Oral School in Portland.
“That was cold-turkey no ASL,” Robin said. “I went into Tucker knowing, at most, only about 10 words intelligible — I was about 3 or 4 — and came out having surpassed the vocabulary of my peers.”
Robin left Tucker-Maxon at 6 years old in the 90th percentile for language. Her father couldn’t have been more pleased. The family moved back to Moscow where Robin enrolled at Lena Whitmore Elementary, which may not have encountered a deaf student before her arrival.
“They were completely supportive of it,” Robin said. “They got me set up with a FM system … so I had that all through middle school.”
FM systems transmit sound from a microphone into a hearing aid using radio frequencies and are widely used in public schools. UI Disability Support Services loans out up to 10 of the transmitters.
Robin also used TTY systems, which connect a telephone with a keyboard. People with hearing impairments type their message and an operator relays it to the listener. UI’s Deaf Services Coordinator Gloria Jensen said the advent of TTY, short for teletype, systems in the 1970s made independence possible for people in deaf culture.
“You couldn’t even order a pizza before,” Jensen said.
She said in-person communication was the only option before TTY systems. FM microphones and pick-ups have also evolved from their clunky early models to tiny microphones and receivers students use today.
Technology has also come a long way in the realm of cochlear implants, in-the-ear devices that imitate sound and transmit it to the brain as electrical signals. Robin had hers installed after a sudden drop in her hearing between fourth and fifth grade.
“Her hearing just went down the tubes,” her father said.
Robin’s poorly formed cilia, tiny hairs in the inner ear that vibrate with sound, made her a fitting candidate for the cochlear implant that lies on top of the hair cells.
Anatomical posters of the inner ear hang in doctors’ offices and science classrooms across the country, but those peach and purple diagrams portray organs that change lives.
“So you have your eardrum and three tiny bones attached to it — little tiny bones,” Baker said.
He knows the set-up all too well. Those bones hook to the cochlea — a miniature snail shell filled with fluid and lined with cilia. Sound waves wash through the cochlea, tickling the cilia at different frequencies like wind across violin strings.
“In Robin’s case the hairs were damaged and then many of them died as she was growing up,” Baker said.
Cochlear implants begin with a hole in the skull to install the interior mechanics. A wire outfitted with 16 electrodes snakes into the cochlea and electrically simulates vibrations of cilia. The exterior part is a receiver about the size of two quarters affixed to the head with a magnet and receivers behind each ear. Sound information is transmitted as electrical signals and decoded by the audiotic nerve.
“All that kind of creeps out a lot of people in the ASL community that think it’s kind of a Frankenstein thing to do to kids,” Baker said.
But he’s an avid proponent of oral education because of Robin’s success in the hearing world. After a year of interpreters and captioning and a month of recovery, Robin heard her cat Lizzy purr for the first time.
“My dad is pretty dogmatic that oral is the best option and I agree with him for the most part,” Robin said. “If you need ASL it should always be available for you, but I feel like being oral gives you a chance at a richer life.”
An aid sat in the back of Robin’s class to provide real-time captioning services until eighth grade when Robin took control of her Individualized Education Plan. All special education students have an IEP, and until high school Robin’s included a captionist and an FM system. She said teenage rebellion hit and her still present independent streak surfaced.
“I was just like, ‘Screw this, I want to be alone. I don’t want to have that aid with me. I just want to be independent,'” Robin said.
So she ditched her captionist and FM system during high school and relied on her friends and her implant-boosted ears. She sat in the front row and used a notetaker. Her father called her smart and independent. He is proud of her.
Robin is a National Merit Scholar and a member of the University Honors Program. She received her only B in organic chemistry and plans to graduate May 2014 with a bachelor’s degree in biology and minors in statistics and natural resources. She will intern at the aquarium where she fell in love with the ocean, and looks forward to serving a non-profit organization as a marine biologist.
“My dad likes to give me a big head and say I’m the poster child for the oral debate because it shows you really can have a hearing impairment and be fully integrated into general society … I think I’d always grown up believing that,” Robin said.
Nol Gordon, a senior English major with a cochlear implant, also calls himself a member of the hearing world. He was born with perfect hearing, but carried a virus that caused severe hearing loss by age 2. Gordon’s parents enrolled him in public school from the outset and starting in third grade, he had a constant companion in his ASL interpreter. He became profoundly deaf at 12, and after two years in the silence Gordon opted for a cochlear implant and regained 85 percent of his hearing.
“I decided I didn’t want to be deaf anymore,” Gordon said. “It changed my whole life.”
The added awkwardness of an interpreter made middle-school socializing a struggle for Gordon. He said his peers had little experience relating to people who used ASL, and they often spoke to his interpreter instead of him.
“I was pretty isolated in middle school,” he said. “Kids … weren’t sure how to talk to me — they weren’t sure how to address me.”
Jensen said many students with hearing impairments, especially signers using an interpreter, feel isolated in hearing schools. Gordon communicated through competition. He played sports with his hearing peers and did well academically, but his cochlear implant opened doors outside the classroom.
“The hardest part of the high school experience being deaf wasn’t being able to do school work, it was being able to fit into the social hierarchy,” Gordon said. “When I got my implant that changed a lot. I was able to communicate and assert myself and make more friends.”
He traded his interpreter for a notetaker during high school and his first two weeks of college. He hasn’t visited DSS since then. Robin also functions independently at UI. She asked about accommodations during her college search, but has yet to visit the DSS office.
Baker said students with hearing impairments who communicate orally tend to be better off academically as well as socially. He said children who communicate primarily through ASL struggle with the complex grammar and sentence structure of spoken English. ASL is constructed in noun-verb sentences with abbreviations and few conjunctions, prepositions or articles.
“Kids who are signers graduate from high school with fourth-grade reading levels because spoken English is a second language,” Baker said.
Jensen said the state School for the Deaf often teaches more remedial English because its students have to learn the language without hearing it. She compared their experience to an English-speaker trying to learn Japanese from inside a sound-proof booth.
The Idaho School for the Deaf and Blind has its main campus in Gooding, a city of 3,500 about 100 miles southwest of Boise. Baker said the out-of-the-way campus almost closed so the state could better support isolated school districts.
Idaho’s widely distributed population makes it difficult to reach students in rural areas, Baker said. Many students with hearing impairments in Idaho’s public schools are alone in their district, Jensen said, so they only interact with hearing people. Robin was one such student.
Deaf culture thrives in state schools, Jensen said, but is dwindling on a larger scale because technological advances in cochlear implants and hearing aids divided the deaf world.
“Now we have the culturally Deaf who have been raised with sign language and have been using it their whole life,” she said. “Then we have this other group of people who are also deaf — you take out the batteries and they’re deaf — but they have a cochlear implant and they function as hearing people.”
Doctors have begun implanting infants, which the National Association for the Deaf stood solidly against at first, though Jensen said its stance has softened. NAD leaders believe children have a right to be deaf. According to deaf culture, there is nothing wrong with deaf babies and they do not need to be fixed. Cochlear implants were stealing generations of a cultural and linguistic minority.
Baker encountered such an attitude at the Washington School for the Deaf, where students learn in ASL. Administrators felt that people who are deaf should embrace deaf culture rather than try to be something they’re not. Baker rejected that paradigm and put Robin in a position to communicate with the hearing world instead of her deaf peers. He credits past oppression with the deaf community’s strong culture.
“They’re very defensive about it and you can see why, I mean they’ve been discriminated against forever,” Baker said. “The old schools that were founded were called ‘schools for the deaf and dumb.’ That’s the kind of prejudice we had against deaf people.”
Today’s deaf culture is more concerned about dropping numbers with the rise of technology. Jensen said Deaf communities have opened to people with cochlear implants and hearing aids in hopes of bolstering their dwindling populations.
Gordon said he remembers being maligned by some of the culturally deaf people he met who disagreed with his use of bulky technology. But his one-week attempt at ASL education was enough to convince him of his place in the hearing world.
“When you go to an all-deaf school for most of your life, you don’t know how to function in a hearing community to the extent that you need to,” Gordon said. “They just don’t give you the prerequisite skills.”
He said sending a deaf student to a deaf school would simplify his or her social interactions, but culturally deaf people are too few and far between in Idaho to make the trade worthwhile.
“I’d rather be isolated but educated than be educated at a sub-par level and feel like I could never fit in the hearing world,” he said. “My parents … felt like public education was the best route to go and so far it has been.”
Fitting into the hearing world is a challenge for people with hearing impairments of every degree. Jensen said people who are hard of hearing tend to struggle more than those who are entirely deaf because their hearing ability changes with their environment. The size of a room, how many people are in it, the frequency of a voice, the direction sound is coming from, and background noise affect their ability to hear someone sitting across the table.
More and more learning takes place in small groups where students talk over one another, speak without raising their hands and sit in clusters. Students with hearing impairments may have trouble tracking such conversations. Robin said lecture halls create a more suitable learning environment for her, while discussion classes present a challenge.
“I can focus on a teacher and hear her fine,” Robin said. “But if it’s a discussion, I don’t know who’s talking or what they’re saying.”
Daniel Bechtel, a senior in public relations with moderate-to-severe hearing loss, was apprehensive about UI’s packed lecture halls. His hearing aids amplify every sound, making shuffling papers, tapping feet and whirring fans a huge distraction. Bechtel said he gleans about 90 percent of information through lip-reading, so every time he looks from teacher to tabletop he misses information.
Unlike Gordon and Robin, Bechtel makes full use of DSS resources. He uses real-time captioning and sometimes borrows a LiveScribe SmartPen, which syncs recorded audio with written notes. Jensen said the pens go for $100 apiece at the VandalStore. DSS owns 80 of them.
Bechtel had flawless hearing until age 3 when an inherited gene from his father took effect and he received his first set of hearing aids. He used an FM system at each of his three elementary and two middle schools. Since his time at UI, though, Bechtel has come to rely on real-time captioning to keep up in class. He said the service is irreplaceable and advocates for its integration into all levels of education.
“It’s probably the best thing that’s ever happened to me as a hearing-impaired student in the public school system,” Bechtel said.
Captioning services arrived at UI seven years ago when a junior studying education lost the rest of her already impaired hearing.
“She came to me in the spring saying, ‘It is going, it is almost gone, what am I going to do?'” Jensen remembered.
It was the perfect opportunity to instate a program Jensen had been dreaming about for years. Trained captionists weren’t interested in relocating for a part-time position, so Jensen hired Teresa Davi as a trainee. Davi spent three months self-teaching, and by fall she was in class captioning for the student whose need sparked the program.
“That was capstone,” Jensen said. “My dream was to have five captionists — we now have 16 and every year it grows.”
Jensen estimated about two-thirds of the 30 or 40 students who use hearing accommodations at UI use captioning. Students such as Gordon and Robin aren’t part of that count because they don’t use DSS resources.
“I’ve made every effort to assimilate myself into the hearing community,” Gordon said. “I’ve had to work, I’ve had to play sports, I’ve dated hearing people — my world has always been hearing and I’ve had to adapt to it as best as possible.”
Gordon has interacted with other students who have cochlear implants and remind him how the deaf world is divided. A girl he went to high school with hated hers and never wore it, opting for ASL instead. But a man he met at UI loves his implant and swears by its positive impact. Robin said she hasn’t interacted with deaf students since her time at Tucker-Maxon, except at special summer camps and seminars.
“I always wondered what it would be like if I was in a bigger city with more deaf kids instead of just being by myself in Moscow,” she said. “Sometimes that would have been nice to have that support system, just to be like, ‘Man, being deaf is hard sometimes.'”
She said being on her own doesn’t bother her, but she’s glad her audiologist gets it. During her Semester At Sea, Robin met a woman on-board who was deaf and used an ASL interpreter. Robin said her ability to socialize through ASL made her think signing might not be so bad.
“But I’m still glad my parents made the choice they did,” she said.
Robin remembered attending a deaf and hearing symposium with her dad and learning that some people whose parents chose the oral route resented being stuck between two worlds — never fully embraced by one culture or the other.
“It’s a weird mix of wanting to be recognized deaf and not really caring about it,” Robin said. “It is true because I’m not totally hearing as much as people think I am … but it’s still so much better.”