Device Signals New Voice for Impaired : High tech: Stacy Bibb, a 17-year-old quadriplegic, uses a special retainer in the roof of his mouth to operate a computer.
It took 45 minutes for Stacy Bibb to laboriously write his name. But for Stacy, a 17-year-old quadriplegic from San Diego who can control only the movement of his tongue, those painstaking minutes signal a new beginning, an entree to a world that has eluded him.
For the past eight weeks, Stacy has been learning to use a tongue-controlled computer--one of six quadriplegics in the nation trying out this cutting-edge technology--that could one day enable the young man to communicate with his peers or an employer.
To make a Christmas card for his mother, he wrote his name with the computer, poking his tongue at nine buttons on a retainer in the roof of his mouth.
The card, which he plans to give her today, is very simple. He wrote his name, then her name. The rest of the message took one complete day: “Merry Christmas, I love you.â€
Every weekend since October, Stacy has asked his mother to tell him about their plans for Christmas. Every year, Portia and Stacy Bibb drive six hours to visit his grandmother in Phoenix. But this Christmas, Stacy has been scarcely able to contain his excitement at the prospect of showing off his computer to his relatives.
“He’s just so proud. Stacy will blow off MTV and eating for time on the computer--now that’s something,†his mother, Portia Bibb, explained.
Without the computer, Stacy communicates by sticking his tongue out. When he does, it means: yes. When he scrunches up his mouth, that’s a no. When his mother tells him about their Christmas plans, Stacy sticks his tongue out a dozen times, fast--a signal that he’s very excited.
Though Stacy is still struggling to conquer the software, he has a newfound confidence.
Using the computer, he can say he wants cheeseburgers and French fries for dinner. When his school started up a computer club, Stacy signaled that he wanted to join. And, during a recent visit with a reporter, he told his mother to stop interrupting him.
Stacy’s confidence has spilled over to occasions when he is nowhere near the computer. One Sunday, he signaled to his mother that he wanted to go to the store to select a present for a friend. And sddenly, he has started directing his mother how to navigate through traffic, indicating with his tongue which lanes she ought to drive.
“He’s just involved in everything. You’re driving, and he’s telling you how to drive,†said Portia Bibb, a career counselor at UC San Diego’s International Relations and Pacific Studies graduate school. “Stacy is much more clear now about what he wants and who he is. This is beyond my wildest dreams.â€
Across the nation, there are more than 1 million quadriplegics, whose condition can be a result of various causes, such as spinal cord injury, muscular dystrophy and--in Stacy’s case--cerebral palsy.
Stacy, looking frail and almost brittle with his muscles taut, spends his days in a wheelchair. When he operates the computer, he likes to have his arms strapped down, as he cannot control them. Otherwise, as he strains to use his tongue, his arms will occasionally fly up into the air, which embarrasses the young man.
In fact, recently his arm abruptly jerked up into the air, rubbing a friend from her knee to thigh, which only made him laugh.
Like many afflicted with cerebral palsy, Stacy’s growth has been slowed. Unable to relax his muscles, he burns up calories and cannot eat enough to keep pace. Now 17, he weighs only 60 pounds.
At birth, Stacy was 11 weeks premature and weighed 2 pounds. After nine months, his illness was diagnosed as cerebral palsy, a condition in which the body is unable to govern its muscles.
Progress has been slow. Though Stacy is 17 chronologically, doctors say his mental development is akin to that of an 8-year-old. On a developmental level, unable to control his limbs, he is on a par with a 4-month-old. But clearly, the young man is bright, and his teacher, Daniel Kelley at San Pasqual High School, suspects he may have a photographic memory.
“Stacy, because of his cerebral palsy, I don’t know what kind of setbacks he’s had cognitively. But he’s right with you,†said Kelley. “How much more academics could he do if he’s given a voice and tools? We just don’t know how far Stacy can go.â€
Yet the achievements that would be simple and almost meaningless for a small child are major hurdles for him. When he was 6 years old, Stacy learned to signal “yes†and “no†with his tongue. “We were elated,†Portia Bibb remembered.
At age 8, he first used a computer and operated it with his foot. But, after the first of four major hip surgeries, Stacy could no longer control his foot. Instead, his only link to the outside world became his tongue.
As Stacy’s physical abilities became more and more limited, so did the opportunities for technology that could help him. Stacy cannot use devices that employ “sip and puff†technology, in which the air is sucked out of or puffed into a straw. And a device employing a head band and tongue switch proved frustrating because Stacy has virtually no control of his head position.
Gary and Portia Bibb, now divorced, stumbled across the tiny Palo Alto company Zofcom Inc. at a conference for the disabled. But the couple worried that their son would be unable to master nine buttons on a retainer in the roof of his mouth.
And yet, the $6,000 system, which became available last spring, seemed like Stacy’s best option.
With this device, a wireless transmitter is placed in the roof of the mouth. The retainer has a nine-button key pad, and, when the buttons are pressed, they transmit a radio signal that is picked up by a controller box. The device can be used to allow the individual to operate audio and video equipment, switch on and off lights, open windows and doors or control a computer.
Portia Bibb has struck a deal with her son: When he is 20, they will expand the system so he can switch on and off the television and CD player. And, for a hard-core heavy metal music aficionado, which Stacy is, the promise of such power is intoxicating.
But clearly, Stacy has not yet mastered the computer, which his mother hopes will help him with academics. Recently, he mistakenly trashed a computer program. And the software is frustrating because he depends on the nine buttons as directional keys to move the cursor on the computer screen.
Yet Portia Bibb imagines the future when her son can freely use the computer, which could allow him to hold down a job. But she also worries about the years ahead: What if something happens to her, and he is left on his own?
“Before we had the computer, we had to deal with how different he was--what he was lacking,†she said. “This is his tool to be like other kids. If something happened to me, he has the tools. He can get what’s going on in his head out to the others.â€
