Professor Cory’s Waking Moment

The story of the SHARE Foundation and one memorable evening…

Photo of Dr. Cory talking to Linda Texceira.
Prof. Cory speaking with Linda Texceira
In the early 1980s, Professor Les Cory asked Linda Texceira what goals she had in life and immediately kicked himself. “I thought, What a stupid question to be asking this person? What was I thinking?”

Texceira, then age 24, had the equivalent of a 4th grade education. Born with cerebral palsy, she communicated to her mother by gazing at individual letters on a Plexiglas board. Using this board, she painstakingly spelled out her answer: “I want to earn a high school diploma.” The reason? “To get a job.”

At the time, Cory worked as a professor of electrical and computer engineering at Southeastern Massachusetts University. He’d read about Texceira in a newspaper article, and contacted the family. He thought emerging computer technology might be engineered to help her communicate more effectively. During their very first meeting, Cory realized that although Texceira had attended a school for students with intellectual disabilities, she was a far cry from meeting that criteria. “We’d discovered we had the same birthday. Then she made this joke, and I saw she’d figured out my age from my birth year, and that our ages–24 and 42–shared the same numbers. ‘Same numbers’ she was telling me. It was my waking moment.”

For Cory, meeting with Texceira that evening would jolt him in two important ways. First was discovering that she was locked in physical circumstances that prevented her from anything close to full expression of her personhood. The second came when she spelled out her desire to get a job.

“Here was a person” Cory explains, “who didn’t speak or use her hands or walk, and she’s saying she wants a job. So I asked her, What would you want to do? And she told me, ‘I want to do something to help people less fortunate than myself.'”

Her words, likely, set the course for Prof. Cory’s own career.

Texceira became the first client of what is now the UMass Dartmouth Center for Rehabilitation Engineering (CRE)’s SHARE Foundation. Cory founded SHARE along with colleagues Phil Viall and Richard Walder. Its mission is “to empower physically challenged, non-speaking children and adults to express their basic wants and needs, communicate with others, control their immediate environments and achieve the greatest practical level of independence.”

SHARE carries out its mission by providing services and high tech equipment that is specifically fabricated, programmed, and/or adapted to each person’s unique abilities and needs. For Texceira, this has meant computer systems that enable her to have a voice and to write using a head switch. Texceira uses her head to select letters, words and menu options with a cursor on a computer screen. Her words can be printed, saved, or voiced by a speech synthesizer. In the early 80s, technology of this kind was so unusual–she was a pioneer with synthetic speech–that Texceira’s transformation garnered national media attention. As result, SHARE’s program received increasing numbers of referrals, and more creative solutions to extremely individualized needs followed. Eventually SHARE and its founders were honored by civic groups, the Massachusetts State Legislature, and even President Reagan.

To date SHARE has served nearly 3,400 individuals. Most clients have come from southeastern New England, but clients span 38 states and 7 countries. The foundation is a nonprofit, funded through donations, events, and a contract with the Massachusetts Rehabilitation Commission. Prof. Cory, himself, stopped designing equipment years ago to devote his time to fundraising. It’s not what he’d prefer to do, he says, but he’s mindful of the people waiting for services.

“One of the things that we’ve learned,” Cory emphasizes, “is that when you take on a new client it’s usually a very long relationship. People’s abilities change, which means you have to change the inputs to the system. Peoples needs change, which means you have to change the outputs of the system. And then technology changes [or breaks]. We find the typical system is good for maybe three years out in the field before it’s obsolete.” As a case in point, Cory tells the story of a syndicated columnist with ALS. The columnist kept writing because of a communication system that SHARE continuously re-engineered with different inputs. He communicated first through speech recognition software, then using an interface controlled by the wiggle of his thumb, then through moving his jaw, then his eyebrow, then an eyelid, and finally through eye-gaze technology. “He told us the respirator kept his body alive, but our system kept his mind alive. I believe he lived longer because of it.” Currently SHARE provides ongoing technical support to over 1,000 individuals.

In 1991, Texceira earned her GED with the use of SHARE-designed technology. She later went on to take English courses at a community college. She has given numerous presentations on her journey with SHARE, and she enjoys writing poetry (see sidebar) and verse for greeting cards which she self-publishes.

As for Prof. Cory, he is supposed to be retired. What this means, in practice, is he spends four days a week as a volunteer fundraiser for SHARE (and the rest of his time on his passion for restoring historic bells). Texceira’s family is still very much in his life. Prior to interviewing for this article he’d just gotten off the phone with Texceira’s mother, “It was about that problem we run into every 15 months or so. The one that gets resolved when I remind her to replace the dead battery.”

See the award-winning 1990 video about the SHARE Foundation and Linda Texceira (requires a Facebook login).

Visit SHARE’s Web site

Donate to SHARE

Prof. Les Cory is director of the UMass Dartmouth Center for Rehabilitation Engineering and serves on the MassMATCH AT Advisory Committee.

Bob Maloney Wants You to Know About the Power of AT (for Independent Living)

by Susan Gonsalves and originally published in the SHARE Notes Newsletter. Reprinted here with permission.

Photo of Bob Maloney smiling and using his Drink Aid.
Bob Maloney
Photo by Tom Meggison
SHARE client Robert Maloney says it is his responsibility to educate other people “in the same situation I am in” about the possibilities available through assistive technology.

Since May of 2007, Bob, who has cerebral palsy and quadriplegia, has been living independently in an apartment in North Easton. He previously worked with Easter Seals and was trained on Dragon Naturally Speaking, a software program that activates household items and the computer via vocal commands. He operates his several systems by pressing switches with his head, using his voice, and sipping on a special tube. Read the rest of the article at this MassMATCH blog Web page.
Navigating Wheeled Mobility? MassMATCH Wants to Know…

Graphic of a person traveling forward in a wheelchair. Wheelchair users in Massachusetts have a range of experiences with maintaining equipment, sending equipment for repair, and finding a temporary chair while waiting for services. MassMATCH partners with two small reuse programs to help fill gaps experienced by residents who need equipment. The Boston Center for Independent Living and Stavros Center for Independent Living (in Amherst) each accept donations of DME (durable medical equipment such as manual and power wheelchairs) and make them available to individuals who need them. The programs are designed to be a hassle-free way to keep you moving. (Read a Stavros CIL reuse success story.)

Currently, MassMATCH is exploring ways to expand DME reuse in Massachusetts and part of that process is better understanding your experiences as a consumer.
Have you had an easy or difficult time obtaining needed repairs?

Have you been provided a temporary chair while waiting for your repair?

Have you made use of a DME reuse program in your community?
Email reuse@massmatch.org and tell us your story. Browse assistive technology (AT) and DME reuse programs at this MassMATCH Web page. Do you know of a reuse program in your community missing from this list? We want to hear from you!
Now Available for Borrowing: The Bright Box Tactile Switch!

The AT Regional Center in Boston (operated by Easter Seals) has added a new switch to the device loan program: the Bright Box Tactile Switch.
Photo of the Bright Box Tactile Switch.

The Bright Box Tactile lights up and/or vibrates when activated by a user. It can be used to control communication devices, mouse interfaces or switch adapted toys with standard 1/8-inch jacks.

The MassMATCH Short-term Device Loan Program allows anyone to borrow assistive technology devices free of charge for up to 4 weeks at a time. Browse the inventory at this MassMATCH Web page. Read more about the Bright Box Tactile at this Adaptivation Web page.

Disclaimer: MassMATCH makes no endorsement, representation, or warranty expressed or implied for any product, device, or information set forth in this newsletter or on its Web site. MassMATCH, the Mass. Rehabilitation Commission, nor the US Dept of Education has not examined, reviewed, or tested any product or device referred to in this newsletter or at MassMATCH.org.