Deaf Jam

An adorable little boy, charges of cultural genocide, and one family's fight to get Seattle schools to listen.

Kristina Udall knew something was wrong with her adopted son Tino the first moment she saw him. It was at the airport. The raven-haired, plump-cheeked 8-month-old was in the arms of Udall's husband Bill, who had just returned from Guatemala, where he'd picked him up at an orphanage. "He just had that look," says Kristina, describing Tino's vacant stare.  "He's just tired," Bill assured her at the time. The Udalls brought Tino home to West Seattle and let him get some rest. But Kristina continued to sense something was amiss. She asked her pediatrician whether Tino had Down syndrome. He did not. Then she tried some tests of her own, including vacuuming under his bed at naptime. When he didn't wake up, she knew: Tino was deaf. Profoundly, according to a subsequent audiology test. "You could put an airplane in his ear and he wouldn't hear it," she says. The news came at a spectacularly bad time for the Udalls. Kristina, a lawyer, was undergoing treatment for an advanced stage of breast cancer (now in remission). Bill was working in information technology for Washington Mutual, which was then on the verge of collapse (he was later hired by JPMorgan Chase). They also had Nico, just 16 months older and also adopted from Guatemala, to look after.  So the Udalls took Tino to Seattle Children's Hospital, where they heard about a technology that has radically transformed what it means to be deaf. Called cochlear implants, these devices transmit signals to the brain that convey sounds. "An adult who has lost their hearing might at first describe them as beeps," says Susan Norton, an audiologist who heads a cochlear-implant team at Children's. Others compare what they hear to Morse code. After a while, Norton says, the sounds just become "normal." They are what language sounds like to people with cochlear implants, who can also learn to speak without any of the muffling or distortion often associated with the deaf. Tino got a cochlear implant in one ear at 15 months. A year later he got a second in the other ear. "It was amazing," says Kristina of the effect on her son, now 4. "You think your kid is never going to say 'Mommy,' and now you have to tell him to please be quiet for just a minute." According to Kristina, Tino even sings, albeit badly, with operatic flair.VIDEO: A playful conversaton with Tino. But as the Udalls see it, they are in a race against time to capitalize on the enormous potential of this technology. As they have learned from Norton and others, the years between birth and age 5 are an essential time for learning language, and children who get cochlear implants as toddlers have a lot of catching up to do. If that doesn't happen, Norton says, "those areas of the brain that are normally devoted to speech and language become devoted to other things." The Udalls are also aware of a startling statistic: Nationally, deaf students reach, on average, only a fourth-grade reading level throughout their entire school career. Consequently, the Udalls are adamant that Tino receive a very different type of preschool education than is the norm for deaf children: one devoted to spoken language, not sign. It's a militant position, perhaps—one that clashes with a deaf culture that views sign language as a tool of liberation and "oralism" as one of oppression. But it's a position more and more parents of deaf children are adopting, according to Judy Harrison, program director for the Washington, D.C.–based Alexander Graham Bell Association for the Deaf and Hard of Hearing, which is dedicated to helping the deaf acquire spoken language. In the only states that track such parents' wishes, North Carolina and Oklahoma, 85 percent say that they want the kind of program the Udalls do, Harrison says. Public schools nationwide are required by federal law to provide preschool for children with disabilities, a strategy aimed at giving those kids early and extra support. And that education is required to be "fair and appropriate" to each child's distinct needs. Yet Harrison says her organization commonly fields complaints from parents around the country who say their public schools won't provide auditory education. Such is the lament of the Udalls, who spent the past two years locked in a fierce battle with Seattle Public Schools. The district says it can provide, if not exactly the type of education the Udalls want, one that is close enough. The Udalls staunchly disagree. Lawyers got involved. "It got ugly," says Kristina. On a recent morning, Tino opens the door of the Udalls' spacious, modern home overlooking Puget Sound. He has a big smile on his face, which is typical, and the same rounded cheeks he had as a baby. "That's my cat," he says immediately of the orange and white feline slinking about. As his mom had promised, you wouldn't know Tino is deaf just by listening to him. To look at him, though, you might wonder about the clips that fit over his ears, which are attached by wires to circular parts attached to each side of his head. "What are these?" his mom asks, pointing to the apparatus for a visitor's benefit. "My C.I.," says Tino, using the shorthand for cochlear implants. Moving into a family room off the kitchen, Tino listens patiently as his mom explains that the ear clips have little computers that pick up sounds and transmit them through the wires to the circular pieces, which in turn send signals to parts of the device that are located inside the head (including in the cochlea, or inner ear). Tino has a kid's way of describing the surgery he had to place the implants. "They had to cut my ear off," he says. (Actually, surgeons make an incision behind the ear.) He also remembers the time his devices fell in the water when his dad forgot to take them off while giving him a bath. The memory makes him giggle. Tino has a sly sense of humor and an urge, shared by all children with siblings, to compare himself to them. Nico, he says, "doesn't listen to my mom and dad. He gets lots of time-outs." Then he adds—never mind his deafness—"God made me listen." Tino also loves riding horses, playing dress-up, and taking swimming lessons at the nearby YMCA. He's often preoccupied with a toy barn he has in the family room, where a boy horse and a girl horse keep company, sometimes acrimoniously in his imagination. As he plays with his horses on this day, Kristina recalls her first interactions with the Seattle School District. Tino was 3, and had participated in an early learning program at Seattle Children's Hospital that used both sign and spoken language. Convinced that Tino was then ready for an exclusively oral approach, she went to look at the district's preschool for the deaf and hard-of-hearing, then at Lowell Elementary on Capitol Hill. The program incorporated both sign and spoken language, an approach known as "total communication." At one point when Kristina was there, an aide wanted to get the kids up from their chairs and have them go over to a "sensory table," where there was an activity related to planting. So, Kristina says, the aide physically took the children by the shoulders and led them there. "She just treated them like they were Helen Keller," she says, like "someone who needed a lot of help; who was deaf and 'dumb.' " Physical manipulation of a person's face or body is an old-fashioned way of getting a deaf person's attention, says Kristina. Without warning, she grabs a visitor's face to demonstrate. "That offended you, right?" It would offend Tino too, she says. With her son, "all you have to do is say 'Tino, look up.' " When the aide got the children to the sensory table, Kristina says, she asked one of the boys about the bag of potting soil that was there. "What's this?" asked the aide. "Soil," the boy responded verbally. "She said, 'No, it's not soil, it's dirt,' and she signed the word for dirt," says Kristina. She presumes the aide corrected something that really didn't need correcting merely because there is no distinct sign in American Sign Language for soil. "To me, it seemed like they were dumbing down the education and limiting it to what signs were available," she says. The district, coping with a huge financial scandal and last week's dismissal of superintendent Maria Goodloe-Johnson, has had little response. Special Education Director Marni Campbell declined to discuss the Udalls at all because of legal issues. Asked more generally about the district's offerings for the deaf—which range from pull-out classrooms, like the preschool, to ASL interpreters and language-therapy sessions for those in mainstream classrooms—she is still vague, at times citing legal issues. "We have all available approaches," says Campbell. "It's very individualized." Describing the preschool, she says that oral instruction, ASL, and another version of sign language known as Signing Exact English (or SEE, which, unlike ASL, follows the vocabulary and grammar of English) are all "accessible." Staff members take into account what each child's "primary mode of communication" is supposed to be, says Campbell. (A child's parents and the district work this out in a federally mandated plan called an Individualized Education Program, or IEP.) After observing the preschool, however, Kristina concluded that the approach she wanted was definitely not accessible. "There was no way in hell my child was going to that program." Instead, the Udalls sent Tino to a small private school in Maple Leaf called Listen & Talk. Founded in 1996, just as cochlear implants were taking off, the school is nationally known for its skills in teaching the deaf through spoken language. Families from as far away as Hawaii have moved to Seattle so that their children could attend, according to executive director Suzanne Quigley. To the Udalls, the school had everything the district's preschool lacked: staff trained in oral teaching by an academy affiliated with the Alexander Graham Bell Association, a number of students with normal hearing who could stimulate the kind of chatter children do (some parents send the siblings of their deaf children), and classrooms that felt, well, "normal," says Kristina. At the unassuming brick school one day, Listen & Talk education director Maura Berndsen says that the classroom may seem normal, but teachers utilize a variety of specialized strategies. For example, she explains that hearing-impaired students, even those with cochlear implants, often have trouble hearing consonants, which produce softer sounds than vowels. "Did I say 'Get your book' or 'Get your books'?", she asks. " 'I walk' or 'I walked'?" Berndsen says that teachers might try whispering the sentence to a student who hasn't understood. "Listen: Get your books," she says again in a hushed voice, noting that it makes the "s" sound "pop." A teacher might try exaggerating the intonation of a sound, for instance the upward lilt that denotes a question. Or they might try singing a question. Berndsen says the school has come to realize the importance of singing, which teaches children about breathing and pitch changes. And so a lot of it goes on in the classroom. This afternoon, one group of 4-year-olds sings a greeting song that names each child and asks them to honk a horn if they love preschool. They sing the days of the week, then they go to a classroom next door, where a "movement" teacher leads them through a series of musical exercises. At one point, they walk and run to the beat of changing tunes, visibly delighted as the music speeds up to the point that they're practically tripping over each other. Ideal as this environment seemed to the Udalls, after Tino spent some months at Listen & Talk, they decided to go back to the district to see whether there was any more it could offer them. Listen & Talk was expensive—approximately $1,500 a month for a half-day. And while Kristina says her family can afford it, others can't. "It became a principle thing," she says. "I thought the school district wasn't meeting its obligation." There's a picture of Tino in a sound booth at Seattle Children's right after his first cochlear implant has been turned on. He's looking toward a sound that has just been made, indicating he has heard it. Tino looks nonchalant—one reason his family and doctors believe that he was probably born with hearing, but lost it due to an early illness. His audiologist Norton, however, has thrown her hands in the air. Even to normally dispassionate scientists, cochlear implants still seem like something of a miracle. In her office at Seattle Children's, Norton runs down the limited options that existed before the devices came out. She recalls her first job at Children's Hospital Boston in 1973. "There were these great big hearing aids that just made everything louder," she says. Aside from their clunkiness, they were useless for people who were profoundly deaf. For those who needed more, Norton was working with a group of researchers who were exploring the possibility of communicating through vibrations on one's belly or finger. In truth, says Norton, "We couldn't do very much." Yet right around that time, scientists started developing prototypes of cochlear implants. "They were very crude," she says. They had big boxes attached to the ear, transmitted just a single, undifferentiated pitch, and didn't always operate as intended. Norton remembers hearing a report of one man with a cochlear implant who picked up radio stations with his device. "There were big debates at scientific meetings about whether they would work," she says. Sure, they would allow the deaf to hear something like a fire alarm, but could they enable people to make all the differentiations necessary to understand language? In the ensuing decades, the devices were refined. Norton holds up one part of an implant, pointing to the gossamer-like wires that are threaded into the cochlea. They contain 22 electrodes, each conveying a different pitch to the brain. "Think of it as a piano keyboard," she says. In the past 10 years, cochlear implants have advanced even further. Doctors used to urge parents to hold off on implantation until their children were 5, for fear that they weren't safe at an earlier age. Now parents are encouraged to get them when their children are only a year old. Evidence has also been found that two implants work better than one. With the refinements and new research, the devices have gone mainstream. Seattle Children's performed its first cochlear-implant surgery 16 years ago. The hospital now does about 40 a year, on patients from throughout the Northwest. Norton estimates that about half of the children born severely deaf in this state now receive the implants. Worldwide, approximately 188,000 people had gotten the devices as of April 2009, according to the Food and Drug Administration. Yet Norton cautions that cochlear implants are "not a perfect substitute for hearing." As soon as children get one, they start a regimen of speech therapy and programs that help them make sense of the new sounds they're hearing. Those programs, which are publicly funded and take place at Seattle Children's, among other locations, last until a child is 3. Then they move on to preschool. Nancy Watson, an "aural habilitation specialist" at Seattle Children's, says she tells families to choose carefully. "I've seen kids blossom" in preschool, she says. "And I've seen kids just mark time . . . What happens in the classroom is going to be make-or-break as to whether a kid will be ready for kindergarten." Yet Norton and Watson hesitate when asked specifically what kind of schooling is needed, aware of the heated politics that come into play. Norton recalls listening to a speech some years back given at the University of Washington by Harlan Lane, a Northeastern University professor who is a leading scholar on deaf history and culture. According to Norton, Lane equated the impact of cochlear implants on deaf culture with "genocide," a term sometimes used in regard to the devices. Lane says he wouldn't have used that precise word because of its emotional connotations. But, as he goes on to discuss the matter, he refers to the United Nations Convention on Genocide to show why those pushing cochlear implants are wrong. Deaf people, he elaborates, are best viewed, not as disabled, but "as an ethnic group, with a language and complex culture." The goal of cochlear implants, he continues, "is to replace the minority language [sign] with the majority language [verbal]." And that, according to the UN convention, is a "crime against humanity." As Lane and other critics of the cochlear-implant movement see it, the new demand for oral education is a throwback to earlier, far more brutal eras. He traces the history of "oralism" back to the 1500s, when British nobility were forbidden from passing on their estates to deaf children. If an aristocrat had only one son who was deaf, he could turn to a variety of hucksters who promised to de-mute the heir. Their methods, Lane says, included cracking skulls and puncturing eardrums to let out nefarious vapors. "It was a horror story," he says. According to Lane, the earliest records of sign language don't appear until the late 1700s, in France. From there, Frenchman Laurent Clerc and American Thomas Gallaudet brought sign language to the U.S., establishing the first school for the deaf in Hartford, Conn., in 1817. This ushered in what Lane calls "the golden era of American deaf education." A flurry of new schools, using what became known as American Sign Language, opened across the country. But oralism reared its head again in the late 19th and early 20th century, according to Lane. He says a fear of cultural erosion brought on by waves of immigrants had Americans convinced of the need to speak only one language (English), while a post–World War I "idea of modernity" had them further convinced that deaf people could be made to talk. Tom Humphries, associate director of education studies at the University of California, San Diego, sees the 20th century as a "pendulum," swinging between oral and signing approaches. In the small South Carolina town where he grew up in the 1950s, deaf children just went to school with everybody else, he says, whether they got anything out of it or not. Humphries, who lost his hearing at age 6 after he'd already learned English, says he read a lot. Communicating through an interpreter who signs to him by videophone, he says he didn't learn ASL until he attended Gallaudet University, a Washington, D.C., school for the deaf. The pendulum swung towards signing during the civil-rights era, when deaf people demanded that educators recognize ASL as a bona fide and distinct language, not just some mechanical simulation of English. The total-communication method, which arose around the same time, was seen as "a foot in the door for sign language," Lane explains. Yes, teachers spoke in the classroom. But the idea was that they would also sign, gesture, and use anything else that worked to communicate with their deaf students. Now, with cochlear implants, both men say the pendulum is swinging back toward oral education. "I'm worried," says Humphries. Like Lane, he doesn't believe that implants work nearly as well as doctors say they do. He says he's talked with people who have discarded the devices due to their ineffectiveness, and observed classrooms where students with cochlear implants seemed to be falling behind. "What I think will happen is this huge realization that a lot of children with implants are failing in schools," he says, meaning schools that are providing them with only an oral education. These children can't really hear, and they haven't been taught to sign, either. "I've missed so much," he says the children will realize when they grow up. And then, he says, "there will be a backlash" against the parents who, fed misinformation by doctors, insisted on denying them what he calls the "natural signing environment" of the deaf. According to some parents of deaf children with cochlear implants, the backlash against oralism is already here, though it's not yet coming from the kids. Seattleite Eleanor Ferris Huebler recalls that after her daughter Claire got an implant 12 years ago, "there were people who would literally turn their backs on us." Some would say "You're denying her birthright" or "You're pushing her to be something she's not." Claire is now a freshman at Roosevelt High School, where she attends mainstream classes. "She's an avid reader," Huebler says, and "most people don't know she has cochlear implants." There are other stories of children with implants thriving in oral classrooms. Sixth-grader John Danielsson—who does not sign—was so far ahead of his classmates at the elementary school he attended until two years ago that "he was bored," says his dad Per. "He was reading an additional 80 books a year." Per and his wife eventually moved to Bainbridge Island, where they felt John would be better challenged. Such success stories spur on Norton, who, despite a reluctance to wade into controversial terrain, recently spoke out forcefully about the need for more oral education. Last year, the publicly funded Center for Childhood Deafness and Hearing Loss, located in Vancouver, Wash., held a series of meetings around the state to discuss deaf education in public schools. At one meeting in Seattle last spring, Norton lamented that the "vast majority" of programs for the hearing-impaired are "ASL-based"—programs that also consume most of the state's spending for the deaf. Her case in point: the Washington School for the Deaf in Vancouver, which primarily uses ASL. The state spends approximately $70,000 for each of its 116 students. (Part of that expense is the cost of transporting students home on weekends—in the case of students from remote areas, by plane.) The failure of the state to make similar accommodation for students who need oral instruction is, Norton asserted at the meeting, nothing less than "discrimination." Norton did acknowledge the existence of a few "total communication" programs of the sort Seattle offers, but asserted that most did not make "listening and talking a natural part" of class. She and fellow Seattle Children's researchers recently completed a study that supports her view. They followed 65 children who received cochlear implants and went on to receive schooling in either total-communication or completely oral instruction. Five years after they had received the implants, the children who had gone to oral preschools had verbal language skills on par with all children at their age level. Those attending total-communication preschools were "significantly behind." That may be because the practice of total communication has turned out to be different than the theory. Rather than adapting their method of communication to whatever a child needs, teachers tend simply to speak and sign at the same time. Ardent sign- language supporters don't like it because they say sign language gets subordinated to English. "ASL and English don't have the same word order," Humphries points out. So the signing is often confusing. Oral-education boosters don't like it because they think spoken language may suffer. "You may have a teacher who's working with one child, and all of sudden they're signing and not using their voice because there's something very important they're trying to convey," concedes Carol Carrothers, who coordinates deaf services for the state Office of Superintendent of Public Instruction. In other words, the program that Seattle Public Schools insists can suit everyone may in reality suit no one. In truth, public schooling for the deaf is inadequate across the board, according to a report that came out of the series of meetings in Vancouver. Published last December, the report cites several problems: low expectations, lack of training by teachers, a dim awareness by some staff of the different communication approaches, and varying district philosophies as to which approach to offer. The Center for Childhood Deafness and Hearing Loss, established by the legislature in 2009, is working to rectify this situation, according to director Rick Hauan. He says his facility provides staff training to districts around the state, including those who want help in providing more oral instruction. The center contracts with Listen & Talk to work with those districts. "Are we attending to [oral instruction] enough? I can't answer that," Hauan says. He does say, however, that he hears just as many complaints from parents frustrated by insufficient instruction in sign language as in verbal language. Part of the problem, says Carrothers, is that "not all school districts can provide all things." There are just too many types of communication used by the deaf—not only ASL, SEE, and spoken language, but something called "cued speech" that is yet another type of signing, as well as the do-it-all method. And there aren't enough students in each district to justify the creation of a strong program for each type: Hearing disorders are relatively rare, and only about one percent of children are born profoundly deaf. "It would really be better if we could regionalize," says Carrothers, meaning that each district would develop a specialty that would draw students from surrounding districts. Tacoma already is moving in that direction. This year it launched what appears to be the state's first public preschool devoted to an exclusively verbal approach. Linda Darling, Tacoma's assistant director of special education, says that next year the program will open up to students from other districts, which can contract with her district to educate the children they're responsible for. That type of contracting already happens at Listen & Talk, where the vast majority of preschool students have their tuition paid for by their home districts, according to education director Berndsen. Seattle, too, has sent its students elsewhere on occasion. When Huebler's daughter Claire was ready for preschool a decade ago, the district only offered one that used ASL. If her daughter was to be exposed to signing, Huebler wanted it to be SEE, which she considered a better bridge to literacy. She persuaded the district to pay for her daughter to go to the Northwest School for the Hearing Impaired, a private facility that uses both SEE and spoken language. "Was it the Seattle Public Schools' first choice? No," says Huebler. "Did they make it horrible for me? No." Soon after, the district started its total-communication program and closed its ASL preschool. The special-education director at the time cited the rise of cochlear implants as the reason a more auditory approach was necessary, according to a 2003 article in the Seattle Post-Intelligencer. Maria Renninger, a member of a support network for families of the deaf called Hands & Voices, says she has heard from a number of parents who are unhappy with the district's subsequent attitude that its new model can meet all needs. "If your child doesn't meet that model, well, you can take your business elsewhere," she says, summarizing the district's message to parents. IEP negotiations have turned so rancorous that one family contacted Renninger to say that the police had been called to escort them off district grounds. Yet the district has made concessions. Cherylyn McRae, education director at Seattle's Hearing, Speech and Deafness Center, says that a family who insisted upon an ASL-only approach recently got the district to send their child to Edmonds. She says she sat in on a meeting between the family and the district, which conceded that it needed to make the ASL component of its program stronger. But it evidently believes the preschool's oral component is strong enough. When the Udalls went back to the district a second time, they asked it to pay Tino's tuition at Listen & Talk. According to a district document, a Seattle Schools team "rejected Listen & Talk because it was determined that the services outlined in the IEP can be appropriately offered in district." The Udalls were dubious, but willing to give the preschool a try—if the district met a list of demands. Those included having preschool staff visit Listen & Talk, getting students with normal hearing into the classroom, and buying something called an FM system, which allows a teacher wearing a mike to broadcast her voice directly to a child's cochlear implant. The negotiations between the Udalls' lawyer and a private firm hired by the district were testy. They scheduled a mediation session in June last year, then cancelled it after hours of discussion because both sides could not agree on how to record the meeting. Kristina, distrustful of the district, wanted a court reporter or tape recorder. District administrator Becky Clifford, as she later reiterated in an e-mail, said it was "not district practice to have recording mechanisms at meetings," a position that was "non-negotiable." In the end, the parties agreed that the octogenarian mother of the Udalls' lawyer, once a stenographer for the territory of Alaska, could take notes. After several back-and-forths between lawyers, the Udalls seemed to get much of what they wanted. They weren't confident enough to give up their spot at Listen & Talk, so they kept Tino there afternoons and sent him to the district preschool, now located at TOPS Alternative Public school on Capitol Hill, in the mornings. He started that schedule last September. But Kristina says no students with normal hearing ever arrived, or even many deaf students. For much of the time, Tino had only two other classmates. "Where are all of Seattle's deaf children?" she asks, speculating that other parents of deaf children move in order to find a program that meets their needs. Kristina says that the district didn't order an FM system until November. And she says Tino told her that there was not a lot of talking in class, at least among students. She did not observe the class herself, she says, because the district told her it would take weeks to schedule a visit. By winter break, she says Tino was starting to regress. "He would point and grunt," she says. So she pulled him out of the district. A couple of months later, the preschool looks somewhat different than Kristina's description. Some new children have arrived, bringing the classroom total to six. Two have cochlear implants. Several have hearing aids. And one girl, a real chatterbox, appears to have neither, though the district won't say whether it has added a child with normal hearing to the classroom. There is also quite a lot of talking while a visitor is present, although the teacher and aide do sign at the same time. "Look at the airplane. What is happening?" asks teacher Karen Kole Leary, a maternal woman who is reading from a picture book about planes. "It is zooooooming." One of her hands flies across the air in front of her, mimicking the motion. "What color is the helicopter?" she continues, turning the page and making the fluttery motion with her hands that is the ASL sign for helicopter. A girl mumbles something. "I need to hear," says Leary, indicating that others should be quiet. "It's an orange helicopter," the girl repeats more clearly. "Good job," says Leary. When she finishes reading the book, Leary tells the class it's playtime and sings to each student in turn to tell them they can choose an activity. ("And if your name is Johnny, you can go play.") When playtime is over, she sings to them again to "clean up, clean up, everybody do your share." At only one point during an hour's visit does Leary directly instruct the children in sign language. It's snack time. "Here's the sign for apple juice," she says, putting a curled finger against her cheek to indicate apple in ASL, then making the "j" sign that denotes juice. She urges a student who wants some to copy her, as she does when she hands out cheese, toast, and other treats. Hearing about the class, Kristina says it still doesn't sound acceptable to her. "I'm not opposed to a little signing," she says. "But I am opposed to asking Tino to ask for an apple using sign." She says she worries that he will use sign language as a crutch. She also says it doesn't sound as if there's one child with normal hearing for every one with hearing problems, a ratio she says the district promised. Still, she concedes that the preschool seems more verbal than it was two years ago when she first encountered it. "Maybe us yelling and complaining is making a difference," she says. nshapiro@seattleweekly.com

 
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