Girl's dark, silent world opens with touch
Seattle Times Eastside bureau
Chehir and Naima Turki argued over whether they should mend the holes their 3-year-old daughter, Racha, has pawed in their living-room recliner.
Racha, deaf and blind since birth, likes to snuggle against the chair, reach through the black vinyl to grasp the billowy padding beneath, then bob for half an hour. The motion gives comfort in her dark world.
Fix the holes, said Chehir, her father. Leave them alone, said Naima.
The chair debate reflects a miraculous reversal in their fortunes. Not so long ago, after Racha was born in Tunisia, her mother would ask herself:
"How can a child live who is both deaf and blind? It would be better for such a child to die."
Instead, she is growing up in a paradise of textures and motion. Tree bark, cheese slices, pony rides.
Her parents abandoned good careers in Tunisia two years ago - he was an airplane upholsterer for Air Tunis, she also worked in the aviation industry - to come to the Seattle area, where Racha is learning tactile sign language in a Highline School District classroom.
They feared that if they stayed in their homeland, their daughter would be isolated, going mad without special training to help her learn and communicate.
"She is a very lucky little girl, lucky to be alive," her mother now says.
The Seattle area has become a magnet for deaf-blind people, known for its two interpreter-training schools, youth camps and advocacy groups that include deaf-blind administrators. The Lighthouse for the Blind, employing more than 300 deaf, blind, and deaf-blind workers, produces aluminum aircraft parts as well as opportunities to be self-sufficient.
In this country, an estimated 70,000 deaf-blind residents benefit from recent innovations - from intensive teaching methods to software that converts Internet text to Braille - and a society that accepts the relatively new notion that every person deserves to be educated.
But for Racha to join that society, her parents - here on a tourist visa that expires this fall - need to figure out a way to remain in the country.
Racha was born Jan. 29, 1998, in Tunis, a North African city of mosques and baroque stone buildings. Her mother proudly showed her to friends and relatives. The baby did not open her eyes, but a friend who was a doctor reassured Naima, "Don't be scared. It's nothing important."
At three months, an ultrasound exam discovered a hole in Racha's heart, so she was flown to a pediatric hospital in Belgium. Her breaths were so rapid she could not breastfeed, and her weight dropped dangerously low. On the surgical table, a tube drew blood through her neck, oxygenated and filtered it, then returned the blood through another tube. The procedure, paid for by the couple's health insurance, was given only a 10 percent chance of success. But Racha survived.
They moved to Seattle, where a relative once lived, with hopes U.S. doctors could reverse the blindness. But experts at Children's Hospital & Regional Medical Center concluded that would be impossible. Doctors said the disabilities were caused by an undetermined genetic disorder.
Her hands are her eyes. Her hearing begins at 70 decibels, equal to the roar of a lawn mower or the shout of her father's voice. To recognize a visitor, she climbs onto his lap, feels the face and tugs at the skin between the jawbones and throat.
Her mother has resisted suggestions to replace her undersized eyes with artificial ones, saying Racha notices the sunlight when she turns her head. It is unknown whether she sees a world of black, or red, or a mass of fog.
Naima remembers the consoling words from a Belgian doctor: "She's not sad that's she's been blind because she doesn't know there is sight."
Racha is off to school on a Tuesday morning. She leans against a white stucco hallway, savoring its lunar textures as she shuffles out of the family's SeaTac apartment.
Arriving at a concrete step, she shouts "bye-bye-bye-bye-bye," her only spoken word so far. Her dad scoops her up and drives her to the waiting school bus, where he lays her hand on the bracket of a rear-view bus mirror to tell her where she is going. Grasping the metal tube, Racha's smile widens.
She arrives at a class, created this year, for six blind preschoolers at the Manhattan Learning Center, near the airport. Teacher Annamarie Lockrem identifies herself by rubbing the 11 silver rings on her fingers under Racha's hands. Lockrem speaks through tactile sign language, in which gestures are made underneath the hands of a deaf-blind person.
The children start with a bowl of cereal, and when Racha is asked if she wants more, she nuzzles against Lockrem's face instead. "I love you, too," the teacher answers, which Racha cannot hear.
Soon it is time for the next lesson, but Racha wants to stay in the rocking chair, her favorite item. This is the opportunity her teacher has waited for. Lockrem gestures "more" and "rocker" into Racha's hands, and Racha imitates her. To demonstrate that the two-word sentence represents a specific act, the teacher lets her play on the rocker for several more minutes.
Before even reaching that stage, a deaf-blind child needs to become aware that signed words exist and can be "listened" to, said Karen Chriest, a parent-infant specialist at the Hearing, Speech & Deafness Center in Seattle who has worked with Racha. Then, pre-schoolers start with simple, inexact gestures rather than precise sign language - the equivalent of babbling.
Lockrem maintains a list of 50 vocabulary words to teach Racha this spring. Only last fall she communicated only through grunts but now knows a couple of dozen hand signs plus the spoken consonants "b" and "sh," learned by feeling the teacher's breath and mouth.
The adults in Racha's life realize that because she is intensely curious, they must provide enough language to enable her mind to mature at a normal pace. To get an idea of the challenge, consider that an ordinary 3-year-old absorbs 25 to 30 new words per day. And how does a deaf-blind child learn about clouds, about "skyscraper-ness," her teacher wonders.
"If we can't keep up with her in regard to her vocabulary and sentences, she would get frustrated," Lockrem said. "A lot of deaf-blind kids develop head-banging, hitting, biting, that kind of thing. You would, too, if you couldn't tell people what you wanted."
On Wednesday, March 14, at 4 p.m., Racha signed her first word, "cracker," by touching her left hand to a bent right elbow. Her dad knew the sign - but there weren't any crackers in the kitchen. He sped to a supermarket for a box of Ritz. Racha signed six times for six crackers.
This month she has learned the words school, cheese, like, peanut butter, candy and baby, to identify her American-born sister, Buchra.
Her personality conveys serendipity as she examines toys with her tongue, yanks the window blinds, sputters water on the social worker. She cries only when her parents leave the living room.
When she stumbled over the recliner recently, her mother did not try to break the fall. Racha landed on the back of her head and got back up immediately.
"I think of her when she grows up. She's going to have to be independent," Naima said. "If she is dependent only on us, she's not going to make it."
Her upbringing here depends on a variety of social services paid for by the government. The special classroom costs $65,000 per year for the six students. The couple say they receive $414 in cash and food stamps for the American-born baby, plus contributions from friends. A state caretaker occasionally watches Racha while her mother rests or shops. She and her baby sister are covered through government medical insurance.
"They were very well off in their country," said Denyel Bryson, the family's social worker. "I think they gave up everything to give her (Racha) a better life. All they want to do is survive, day by day."
The couple's existing tourist visas do not allow them to be employed. Chehir Turki said the $40,000 they brought here has run out, and he is anxious to work.
They are pursuing an H-1b work visa - under the same law Microsoft, Motorola and Cisco Systems use to import hordes of engineers - or an H-2b visa, which lets skilled workers fill in during temporary labor shortages. Chehir Turki found an aircraft-services company willing to sponsor him for his upholstering skills.
Getting the work visa will be difficult, said their immigration attorney, Glen Prior, "but we are going to put forth our best efforts."
Racha's parents say they have faith that things will work out for them and Racha.
"I don't worry anymore," her father said. "She'll be independent one day. She will learn to communicate. She will be something in the society. Like Helen Keller."
Mike Lindblom can be reached at 206-515-5631 or firstname.lastname@example.org.