A Man Who Sees the Glass as Half Full

For the past 16 years, Frederick A. Fay has lain flat on his back. Fay, 53, was a quadriplegic when an inoperable spinal cord cyst developed in 1981, putting so much pressure on his brain stem that his breathing was threatened. The only way doctors could stop the cyst from killing Fay was to confine him to bed.

But Fay has not let that confinement slow him down. A former manager of a computer programming information center for IBM and director of research and training at Tufts University’s rehabilitation institute in Boston, Fay has spent nearly four decades pursuing a successful professional career.

He has also been an advocate for the disabled. Before he was bedridden, he helped start one of the nation’s first independent living centers for the disabled in Boston. He co-founded Opening Doors, an organization that provides counseling and information to disabled people in the Washington area, helped run a congressionally mandated study of the needs of individuals with the most severe handicaps for the Urban Institute, worked with the American Institute of Architects to educate its members about the needs of the disabled and lobbied to make the Washington area’s subway system accessible to people with handicaps.

Although forced to stay on his back, Fay can move his shoulders and thumbs. He uses four computers, a cellular telephone, fax machine, shortwave radio, scanner, copier and color printer to continue his advocacy for the disabled.

Two computer screens are perched face down against a glass shelf directly above his head. A mirror overhead allows Fay to see the keyboard that often lies across his chest. He types 15 to 20 words per minute with his thumbs, and his computer has a voice-activating feature that converts his words into letters on the screen when he is too tired to type.

“With a computer modem and the Internet, I can travel virtually anywhere, talk or write to others across the globe and research any area of human endeavor,” Fay said. “None of this would have been possible 30 years ago.”

Thanks to technology, he has organized voter registration drives for disabled citizens, worked online as a lobbyist for the Americans With Disabilities Act and telecommuted to serve as an advisor to the Clinton-Gore campaigns.

“He accomplishes more each day lying in his bed than 90% of the people that I know do standing up,” said Tim Nugent, professor emeritus of rehabilitation education at the University of Illinois at Champaign-Urbana.

For these efforts, Fay recently received the eighth annual Henry B. Betts award and a $50,000 unrestricted cash prize from the Prince Charitable Trusts. Named for the physiatrist who directed the Rehabilitation Institute of Chicago, the award recognizes leaders who enhance the quality of life for the disabled.

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Fay was injured 36 years ago in his Bethesda, Md., backyard when he was a high school junior. He had just finished shooting some basketball hoops in his driveway. Fay stopped on his way indoors to do some flips on a trapeze in his backyard. He completed two successfully, then on the third he fell and severely injured his neck.

His spinal cord was not severed, but the bruising and the swelling that occurred with the injury were enough to paralyze him permanently from the chest down. In 1961 few programs were available to help people with spinal cord injuries. But Fay’s parents sent him to the Warm Springs Foundation in Georgia, a facility founded by Franklin Delano Roosevelt, who had polio.

In his rehabilitation, Fay learned to move himself from the floor to a wheelchair, get in and out of bed and drive a car with hand controls. His 22-year-old roommate, who was also paralyzed after breaking his neck, taught Fay that life doesn’t end with paralysis. “He told me about college and dating, and showed me what I might be able to do and how I could still live a full life,” Fay said.

When Fay returned home, however, he quickly found that the world was not set up to accommodate people with needs like his. “Every single intersection had curbs without ramps,” he said. “It was like the Berlin Wall everywhere. It was a very inaccessible city.”

His high school had no way for his wheelchair to move up and down stairs or in and out of classrooms. Three tutors came to his home instead. After graduating, he entered the University of Illinois at Champaign-Urbana, at the time one of only two universities east of the Mississippi that was wheelchair-accessible.

Fay studied computer programming during college and experienced his first bout with a spinal cord cyst, a common complication after spinal cord injuries. Microscopic bleeding occurs inside the spinal cord when it is damaged. Blood clots form and produce tiny cavities. The blood clots eventually wash away, but the cavities remain and can start to accumulate spinal fluid. In rare cases, such as Fay’s, these cysts can grow and cause additional paralysis and loss of movement.

Doctors were able to surgically treat his cyst at that time, and Fay graduated with honors. He landed a job at IBM’s federal systems division in Gaithersburg, Md., where he managed a state-of-the art programming information system.

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He married Linda Martindale, who had been paralyzed after breaking her back while drag-racing her boyfriend’s car. They met during his senior year at the University of Illinois. They have a son, Derick.

The couple faced the challenge of caring for a baby. “I was pretty functional even though I was a quadriplegic,” he said. “But I had no dexterity [with] diapers. I did the safety pins with my teeth, and if that isn’t an act of love, I don’t know what is.”

Fay and his wife moved back to the University of Illinois so he could earn a PhD in psychology. His goal was to reduce the physical barriers people with disabilities face. His doctoral dissertation focused on student architects and how they could be educated to design structures that would be more accessible to the disabled.

“I concluded that we needed much better education of architects,” he said with a laugh. He also noted that laws were needed to require “barrier-free access” to buildings.

After graduation, Fay moved to Massachusetts and shifted his focus to community-based programs. He lobbied for changes in Medicaid and helped start the Boston Center for Independent Living for the disabled. Later he was offered a job in Washington at the Urban Institute.

Fay also landed a job as a volunteer on Jimmy Carter’s 1976 presidential campaign, helping to advise him on disability issues.

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In 1979, Fay’s spinal cyst began filling with fluid again. Doctors operated several times to drain the fluid and place a shunt, but the cyst continued to grow. Fay was hospitalized in 1981. The cyst had progressed two feet up his spine to his brain stem and was inoperable.

In the meantime, his wife was admitted to Harvard Medical School, and the marriage became strained. The couple separated in 1981. Today, he lives with Trish Irons in Concord, Mass.

Their ranch house has been designed with extra wide doors and halls and many computer-controlled devices. His bed is a plywood board perched atop a wheelchair frame with a high-powered battery. To prevent bed sores, the sides of his air mattress alternatively inflate and deflate every minute. The walls and ceiling of his bedroom are mirrored to enable Fay to see what is going on in the room.

Rotating shelves next to his bed enable Fay to reach for files, shaving equipment, a water bottle and a fire extinguisher.

“It’s an incredible time to be alive,” he said. “I feel like I’m sort of riding the surf of this tidal wave of the explosion of technology knowledge.”