A resident who advocates - for residents.

Janet Tulloch, now 67, was born with cerebral palsy. At age 43, when her parents died, she moved into the Washington Home located in Washington, D.C. As a nursing home resident, as a writer, and as a witness before Congressional committees, Tulloch advocates for the invisible who live within decrepit bodies behind institutional doors.

"I write because somebody has to say these things," says this author of two books and 20 essays. "Most people in the nursing home are sick and dying. They don't go around publishing articles. But some of us can do things. I feel a responsibility to use my talents."

Nursing Home Resident As Writer

In Generations (Supplemental Issue, 1990) Tulloch pinpoints the source of her independence at the Washington Home:

"For 23 years I have managed to maintain a higher degree of autonomy than the average resident. My room is furnished with personal furniture, radio, television and my small library. I also brought my checkbook, from which I pay my phone bill, buy my own clothes through mail order catalogues, and give contributions to my church and the Corporation for Public Broadcasting . . . Physical independence comes naturally [with] a sense of control over every facet of life."

Born in Canada, Tulloch was always indpendent in spirit. She developed her writing skills without encouragement. Even her teachers discouraged her aspirations as a writer because of her poor coordination. She would break ten pencils within hours. Her first typewriter was a gift from her mother, bought after high school graduation. She developed the writing habit that she sustains today -- and often, it makes her life interesting.

For example, though most writers get little positive feedback, as a nursing home resident. Tulloch runs unusual risks of getting the opposite. Board members at the Washington Home receive copies of her publications, and sometimes must wonder, with trepidation, what she will write next.

Fortunately, Tulloch's fans include First Lady Barbara Bush. "We met in the 1960s when Barbara was a Congressional wife. For two years she was my volunteer at the home. There's nothing phony about that woman."

In 1975 as a new member of the Home's board of directors, Barbara Bush convinced others that Tulloch's writing was important. Their relationship continues, albeit sporadically. A Washington Times photo story of the First Lady and Janet Tulloch shows them arm-in-arm in 1989. "Just a couple of friends" reads the caption.

Writer At Work

Via fiction and non-fiction, for the public and for medical professionals, Tulloch provides a resident's view of nursing home life -- and how it can be improved.

A letter to the editor of the New York Times protested California's resistance last year to implementing patient rights regulations.

Some of her articles address common difficulties at nursing homes. "The Incontinency Taboo" in Geriatric Nursing (January 1989) is straight-shooting advice on ways to discuss this most embarrassing issue.

Often her stories foreshadow important national debates. "My favorite article," says Tulloch, "was a 1985 Washington Post story I wrote about a girl in California, a CP like me. She was paralyzed, fed by a tube. She wanted them to take it out. I said, if this girl wanted to give up, why not? It's her choice."

In A Home Is Not A Home (Seabury Press, 1975), her second book, the fictional but close-to-real life Jody Thomas navigates the challenges of nursing home life. Realistic details force readers to wince. As a nightmarish example, the heroine, upon admission, is asked how she likes her morning eggs prepared. She is not warned that this is the only time they will ask. She must eat her eggs prepared the same way, every day, for the rest of her life.

Continuous contact with the outside world is critical to Tulloch. Her first book Happy Issue (Seabury Press, 1962), co-authored with Cynthia Wedel, was about joining St. Alban's Episcopal Church. "I joined to get mainstreamed and make friends," she explains. "I need to be reminded that everybody has their own handicap. People go to church because they need to be nurtured by God and community."

As Congressional Advocate

Although, because of the cerebral palsy Tulloch speaks with difficulty -- every two or three difficult syllables are punctuated with a gasp for breath -- she has testified before Congress three times. She appeared as a board member of the National Citizens Coalition for Nursing Home Reform, a Washington, DC-based lobbying organization. "When I testified before the House Select Committee on Aging, I felt a reaction," Tulloch says. "Usually all the Senators talk among themselves since they have copies of the testimony anyway. When I talked they kept quiet, and were not afraid to ask questions. I liked that."

A Favorable Environment

Clearly the Washington Home is unusual in its ability to tolerate, even encourage, Tulloch's national voice. In the introduction to A Home is Not A Home Tulloch writes: "The mere fact that I can write and publish a book ... means that I have been sheltered and cared for under such favorable conditions that I am physically and psychologically healthy and contented enough for productive, spontaneous living."

This historic non-profit home with 180 residents is a pacesetter. Its brochure, for instance, states: "all the rooms are private ... The Home encourages new residents to bring their own personal possessions, for these familiar things help them feel at home quickly."

Janet Tulloch's room is at the quiet end of a hallway. Divided into a work space and night space, each area has a radio. "Two radios indicate a sharp division between writing and nursing," claims Tulloch.

In the larger night space a five-foot-long bookcase shows that Tulloch is likely to read in bed at night. An electric wheelchair is parked by the door.

Somehow this room is dominated by the adjoining alcove-office, just seven foot square. Crowded, it contains two desks, a file cabinet, chair and Tulloch's precious word processor -- of which more in a moment. Picture windows on two sides add a sense of great space.

One desk is antique, angle-topped with brass fittings and eight cubby holes. Lined up like soldiers at attention are a Tensor light, pencil holder, scotch tape, hole puncher and stapler -- tools of the trade for any writer. "My father gave Mother this desk for their tenth wedding anniversary," explains Tulloch. "When I use it, I remember Mother. She kept an ink bottle in the cubby hole with a door. As a child I used to fill her fountain pen."

The telephone by the word processor has large numbers, nearly two inches high. "Sometimes I make five or six calls a day. Or maybe I'll use it every couple of days It's important to keep in contact with people in the outside world," says Tulloch.

The Essential Tool

Tulloch's productivity should skyrocket with the help of the Smith Corona PWP word processor, which she acquired in mid-1990.

"The most important thing in my room is my word processor, says Tulloch. "It belongs to the home and was bought by a private foundation. It took me five years to get it."

When her 16-year-old IBM typewriter wore out, a word processor was long overdue. But no one knew how to adapt it for someone with cerebral palsy, i.e., for a body without fine motor control. Finally a volunteer engineer told staff at the home about the University of Wisconsin-Stout's Center for Rehabilitation Technology.

The rehab technologists recommended that a clear plastic surface be placed over the keyboard. Called a key guard, it is removable and custom-cut to fit the machine. This adaptation cost about $150. "I can rest my hand on the keyboard without punching the letters," explains Tulloch. "When I want to punch, I push my finger down into the hole."

All day she types. Punch, after punch, after laborious punch. "I'm learning new tricks every day," she exclaims. "I especially like the computerized dictionary. Now I don't have to struggle with a big book."

Role Models

The combination of an uncontrollable body and incisive mind is reminiscent of the famed English astrophysicist and mathematician Stephan Hawking. He cannot speak clearly or walk, yet he leads the search for a unified theory of the universe. Many believe that Hawking deserves a Nobel prize. Tulloch too thinks broadly, and perhaps she deserves a Noble (if not Nobel) prize -- for her dignity of conception and expression.

"Of course Janet Tulloch is unusual," says Brian Hofland, editor for her recent article in Generations. "She expands the boundaries of what is possible for life in a nursing home. There is variability, even among the mentally intact. The challenge is to try to make productivity possible, to increase the percentage of people who remain autonomous."

Meanwhile, for Tulloch, it is onward and upward. "With my word processor I'm doing more and better quality work," she says. "I've a tendency not to work too long, from 9:30 to 4:00, because I can accomplish so much more. This has opened up a whole new world of communication for me."

Carol Schreter, a Ph.D. gerontologist and freelance writer, lives in Baltimore.