Linda Texceira was once a very lonely girl.
Linda Texceira was once a very lonely girl.
The Little Compton, R.I., resident has cerebral palsy and cannot move her body at all, save to open and close her eyes. While her mind is sharp, she is unable to speak her thoughts or write them down.
"It used to be a very lonely existence for her," said Martha, her mother and caregiver. "She would just sit in her chair and kind of watch whatever I was doing. She was not able to communicate at all. If she needed something, it was like charades: 'What do you want? Is it this? That?'"
And then, fate intervened.
In 1981, when Linda was 24, a newspaper ran a story about her and her sole means of communication: blinking at letters on a Plexiglas board held up by another person.
It happened that Les Cory, a UMass Dartmouth (then Southeastern Massachusetts University) professor, read the article. Ideas began to spark in the computer scientist's head.
The lives of the Texceira family — and thousands of families like them — were about to change forever.
After visiting the Texceiras, Cory enlisted the help of university colleague Philip Viall to develop a computer system that would allow Linda to spell, write and "speak" using a speech synthesizer.
Three decades ago when Cory and Viall were building Linda's computer, almost no one had a home computer "except for geeks like me," Cory said.
While computers did exist that could "speak," Cory said they were used by American Airlines "and cost hundreds of thousands of dollars. In 1981, the idea that a computer could talk was not even thought about.
"Linda was probably one of the first people ever who did that," he said.
One of the first words Linda spoke via the synthesizer was "godsend," her mother recalled.
As word got out in the media about Linda's computer, letters and phone calls began pouring in to Cory and Viall from all over.
"It never occurred to either one of us that there was another person anywhere in the universe with disabilities similar to Linda's," Cory said. "We now know she's one of thousands."
Each one of them has his or her own distinctive abilities and limitations — meaning there is no "one-size-fits-all" computer.
"Linda could read. But the second person we worked with couldn't. "» The third person was blind. "» Every system had to be totally different," said Cory.
Cory and Viall realized early on that if they were to continue designing and building high-technology, adaptive equipment for the disabled, they would need volunteers, a place to work and funding.
Thus, the Society for Human Advancement through Rehabilitation Engineering was born. Today, SHARE is a nonprofit foundation and the fundraising arm that supports UMass Dartmouth's Center for Rehabilitation Engineering. Since 1981, SHARE has helped more than 3,200 people like Linda by building more than 20,000 computer systems for the profoundly disabled.
Incredibly, there is no charge for consultations or computers; the money raised through SHARE covers the cost.
The systems Cory and his colleagues have designed are as unique as the clients who receive them. Some are operated with foot pedals, others with eye-gaze boards, and still others respond to a gesture as subtle as lifting an eyebrow.
"If a person's highest functioning ability is to raise and lower their eyebrows, there needs to be an eyebrow switch in the system," Cory said.
"Other people can wiggle a finger, nod their head, suck on a straw. Their abilities determine the inputs," he said. "We build the computer around what they can do — even if that's just blinking."
For example, one client, a woman with post-polio symptoms, "can speak but has extremely limited mobility," Cory said. "She can move one finger slightly, she can move her foot to some extent, and she can move her head to the side very slightly.
"We built her a system that allows her to email and access the Internet by moving her index finger a fraction of an inch with the force of a fraction of an ounce.
"She's typical of the folks who come to us," Cory said.
Because the computers are given away, Cory, now retired from teaching, spends most of his time raising funds for the nonprofit SHARE. The six staff members, including Cory, are volunteers. The grad students from UMass Dartmouth who work in the lab are unpaid.
"I'd love to be working in the lab but I have to work on getting money to keep our doors open," he said. "That's a full-time job."
Those who have been beneficiaries of SHARE say the computers have been transformative.
Linda Texceira, now 54, has received at least 10 different computers over the last 30 years to keep up with technology. "SHARE has changed Linda's life so much. She can join in conversations; she can email her nieces and nephews," her mother Martha said. "She's so much more independent now. We think the world of SHARE."
Fairhaven resident Dick Douglass' son Ken was diagnosed with ALS — Lou Gehrig's disease — in 2001. Ken, who lives in Fairhaven with his wife and two teenage daughters, has now completely lost the ability to speak.
"As the symptoms progressed, SHARE developed new systems for him based on what he could do," Douglass said, adding that he "can't say enough good things" about SHARE.
Cory — who was honored at the White House by President Reagan and has received numerous other accolades — downplays any personal accomplishment.
"We're just a bunch of people struggling to improve the quality of life of other people," he said. "We could use some help to continue what we're doing."
To donate, or for more information on SHARE, call (508) 999-8482, email firstname.lastname@example.org or visit www.share.umassd.edu.