Fred Fay: A Man Who Does All His Work in Bed

This 50-year-old has already accomplished more from bed than most people do their entire lives. Fred Fay, disability rights activist since 1963 and chair of the Massachusetts Democrats with Disabilities, must remain prone due to complications from a spinal cord injury acquired during a trapeze fall at the age of 16. Fay, nicknamed the 'Mad-Faxer', patiently conducts activism through mail, phone, fax, and electronic mail from his home in West Concord; he has a doctorate in psychology from the University of Illinois, and sees himself in terms of roles: political activist, parent, researcher, psychologist, computer scientist, and community organizer. He is an optimistic, energetic workaholic who has supported himself throughout his life. He is also unapologetically arrogant.

"I like talking about myself," Fay says 10 minutes into a three hour interview. Nevertheless, "He seems like a person who has made peace, although it is very hard to get below the surface," says Amy Hasborouck, former director for Education and Advocacy at the Boston Center for Independent Living, who has worked with him on various projects.

"Fred's in the living room," says Trish Irons, a sturdy brunette, ushering me into the spacious hallway. We walk to a broad white-painted doorway. "We're as good as married," Fay later explains with a smile, referring to Irons. Their relationship has lasted a dozen years. Both were previously married; they met in the hospital when Irons was caring for her dying first husband. Fay's former wife, Linda, was paraplegic, and although he doesn't discuss it much, there had been friction in that marriage.

My attention is drawn to the angled hospital bed on wheels. It is well-cushioned, with a heavy metal frame surrounding it like a transparent box. On this bar hang various accoutrements including a fan, tan plastic hand-strap reminiscent of a subway hold, a clock, and controls you might find on a video game or motorized wheelchair. Fay, co-founder of the Boston Center for Independent Living which helps disabled people live independently -- the second one in the country -- later explains that this wheelbed was his invention, created to allow him freedom from over six years surrounded by hospital walls.

Now I notice the 1' x 1' mirror hanging from the bar, angled toward me. This allows him to view what he cannot otherwise see from his reclining position. In it, I see a mobile face, a cross between a cherub and a bald, short-bearded Santa Claus with active eyebrows. Smile wrinkles crease his lightly-complected cheeks. His forearms are bony, but his biceps are toned. I glance from mirror to face, unsure where to focus. We exchange greetings. I consider what makes him so content. He has diabetes, lactose intolerance, sleep apnea, and high-pitched ringing in his ears, not to mention continuous pain and problems with breathing and swallowing. After an eternity of struggle, life is a prized jewel. "I've always expected the best," says a determined Fay, co-chairman of Justice for All, an organized effort to fight cuts proposed in the Contract with America.

According to Hasborouck, "He reflects to the outside world an even-tempered, thoughtful, affectionate and balanced personality." Fay lies with dignity on the wheelbed, a sheet the color of mint dinner candy covering him from bare mid-torso downward; underneath, his legs stick out in a stiff ballet-like 45 degree angle. He moves a coordinated left arm to refocus the mirror. An unpretentious smile adorns his reflection. I can see only this face and a corner of the azure-striped pillow. His lively sky-blue eyes sparkle. "Do you want to take Heidi on a tour of the house?" Irons interjects from the doorway.

Surprisingly, Fred's bed begins steadily moving toward the kitchen, then kitty-corner through the hallway toward the sun room, buttons and levers on his bed revealing their uses. A videotape-filled wall spirals open for his unlikely vehicle at the touch of fingertips. Memories of space-age Epcot Center come to mind.

In the 'bedroom', connecting to the translucent sun room, this enthusiastic bedridden man halts at two computer screens which hang downward to his face, avidly gesturing as he speaks. He is an astronaut charting his progress as he explains the terminal setup and remote controls for various fans. He turns to his left and spins an unusual round table roulette wheelstyle to reach for miscellaneous equipment. He hired carpenters out of the phone book to custom build such items and had the sunroom built partly to provide solar-energy. It also earns him a tax-break by "qualifying as an active solar system" due to powerful temperature-controlled fans. Forty-five items are on remote control. "It enables me to be independent most of the day," Fay asserts, moving back toward the kitchen. Mirrors cover the room, so he can view the world from every angle. He sees "disability more as a function of the environment than [him]self."

Fay, an active supporter of Clinton's campaign in 1992 and Edward Kennedy's 1994 run for Senator, was born in Columbia Hospital in Washington, DC, to a Vassar graduate mother and a Haverford graduate father who raised him in Woodacre, Maryland. His father, a DC government official responsible for sewers, was a "very inventive" role-model, says Fay, who himself received a distinguished service award from former President Johnston. "I never in my life saw a service person." His dad fixed everything. "He embodied the quotation by Tim Nugent 'the presence of a problem is the absence of an idea.'" Within a week of Fay's accident, his father jury-rigged a tool of three soldered rings so he could write. Nugent, an early mentor of Fay's, began a tradition of services for disabled students at the University of Illinois, the handicapped-accessible university Fay would later attend. His grandfather, another inspiration, who was told by doctors after an accident that he would die and never walk, "just got on with his life, and didn't complain." Fay considers his youth an "idyllic fantasy, a Shangri-La" compared to childhood today. "The average kid by eighteen has seen 30,000 deaths on television ... It's really tragic," says Fay. "The threat of nuclear war is probably the greatest threat."

Now, wheelbed-bound next to the kitchen table, Fay describes his 1962 accident with concentration, but without apparent sorrow, carefully feeding himself with a fork bent at a 45 degree angle and held between his index and middle fingers. His father had put a ten foot high trapeze in their backyard tree for him and his brother. (Fay inadvertently drops some food off his fork and patiently scoots it back on.) He would perform various feats, including 'skin the cat' where one hangs by the feet swinging, and does a somersault with both hands remaining on the bar.

One day, clad in a white T-shirt and blue jeans over swimming trunks, Fay approached the bar on his way in to dinner. He began a 'skin the cat' with hands hot and sweaty from a morning of swimming and shooting hoops. His foot hit something hard and his right hand slipped. His brother found him lying on the ground.

"I kept asking him what time it was. He kept saying 6:00, but I was asking what year, what century it was. I was in shock." Then, Fay asserts, he had a near-death experience. There was a light at the end of a tunnel and a voice, perhaps his, saying "It's not time yet." Then he was "swimming, paddling [his] way back to the surface."

Later he philosophizes, "There are obviously forces in the universe we don't understand. If people want to call that God..."

In the hospital, he, like Christopher Reeves, had a laminectomy, spinal cord surgery to remove bone chips and fuse the sixth and seventh vertebrae. There he remained for 5 weeks, later moving to the Georgia Warm Springs Foundation for a 5 1/2 month stay.

While at this institution, Fay met Larry Kegan, a peer who inspired his later political activism. Kegan visited his room to talk about "his hand-controlled car, dating women, and drinking with his buddies," the life Fay had anticipated before his accident confined him to a wheelchair. "He hit me point blank. You know you'll never walk again." After he left, Fay cried for two to three hours, "grieving for the loss of [his] legs, like for a death."

The phone rings. "Honey, that's for you. It's 3-6-9," Fay calls out to Trish in the living room, who is pumping iron in front of the television. They even have multiple phone lines; what are they missing?

It was Derek, his son. Fay asks whether Derek mentioned how the Red Sox did. They "get my hopes up that they're really gonna do it," he gushes. His dream series is the Red Sox vs. the Cubs. Unfortunately, following sports takes time away from his activism. He is considering cancelling his newspaper subscription as sports are distracting. "Most of the stuff I read is advocacy-related," he says proudly.

In 1965, Fay developed a cyst at his injury site. It slowly built up pressure on his spinal cord, which in turn pressured the surrounding nerves. He initially felt only a sharp twinge in his neck while in the driveway washing his car roof. Within the next few months, he slowly lost sensation from his hand to his elbow, to his shoulders, and eventually up to his ear. He was rehospitalized and had his second laminectomy to treat the cyst.

Afterwards, he remained free of symptoms for fifteen years. During this time, he received his bachelor's, worked for IBM for about three years, then went for his doctorate. In 1969, Fay served on the executive committee for a National Citizens Conference on Rehabilitation of the Disabled and Disadvantaged, worked at the Massachusetts Council of Organizations of the Handicapped, and a few years later worked at the Urban Institute in Washington as a senior research associate on a study of vocational rehabilitation for people with severe disabilities.

Around 1968, Linda discovered she was pregnant. "It was a shock," Fay says. "The doctors said the odds were 100,000 to one." Derek, now 28, has received the President's Scholarship, full tuition plus living expenses to Boston University, where he is working on his doctorate in Anthropology. Relating this, Fay overflows with pride, smiling ever more frequently and talking of his son's 160 IQ. When asked about his favorite memory, he pauses. "Gosh...," he says, looks to the left, chews for a second, "So many good ones." They include a letter Derek wrote saying, "His father was his best friend growing up," and watching the fascinating ways "a three to five-year-old views the world." When asked how it was raising a child from a wheelchair, Fay retorts, "It was easy."

In 1978, symptoms of Fay's cyst reappeared, worsening his condition and causing problems swallowing and breathing from a sitting position. Within a year, Fay moved to a stretcher, and, at the age of 44, his doctor urged him to retire from his position at Tufts Medical Center as Director of Research and Training. He did, realizing he probably had only one year to live.

That was years ago, before he received the Jaycees Ten Outstanding Young Men Award, before he became head of the DNC Disability Advisory Committee, which assists and counsels the DNC in increasing its numbers of active disabled people, and before his founding of the American Coalition of Citizens with Disabilities and many other such groups. Says Fay, "It's just a matter of deciding how you're gonna view life. Many people fall into stereotyped ways of responding, worrying about the future. Dwelling on the past is just a waste of time. People create their own destinies."