Remembering Karen, Catholic Advocate for Those With Disabilities
Karen Killilea was the subject of two bestselling books written by her mother, Marie, that chronicled her triumph over her disabilities.
The Killilea family in New York once regularly received so much mail that the post office kept it in big satchels “like in Miracle on 34th Street,” recalls Kristin Viltz. But rather than sacks of mail addressed to Santa Claus, as depicted in the 1947 film, the letters were for her older sister. One from overseas that made it to their home was simply addressed to “Karen, United States.”
Karen Killilea was the subject of two bestselling books written by her mother, Marie, that chronicled her triumph over her disabilities. Doctors told Marie, a fervent Catholic, to institutionalize her daughter. Instead, the family spent hours each day for a decade moving her limbs back and forth. Defying all expectations, she learned to walk with crutches, swam, took care of animals, attended Catholic school and eventually lived independently.
“She was supposed to live eight minutes. She lived to 80,” said Viltz, who lives near Chicago. "My parents believed God gave them a gift. God gave them a daughter, and they wanted her to live as normal of a life as possible."
Killilea died last October in New York. She worked for 40 years as a receptionist, known for her good cheer and for bestowing nicknames on those she knew, at Trinity Retreat House in Larchmont, New York. "She knew Cardinal [Terence] Cooke [of the Archdiocese of New York] well and called him ‘Cookie.’ He loved it,” said Viltz.
Born several months premature in 1940, Karen weighed less than 2 pounds. She spent nine months in a neonatal intensive care unit. Doctor after doctor told the family her case was hopeless, as another put her prognosis in terms that were more cruel. Eventually, they found a doctor who determined she had cerebral palsy, giving the parents a road map to guide her through physical therapy.
Karen, the first book penned by her mother, was published in 1952, when she was 12, and With Love From Karen in 1963 detailed her progress through young adulthood. At a time when those with serious disabilities were hidden away and deemed incapable of independence, Karen’s story hit like a thunderbolt. “Anyone meeting Karen will postpone resigning from the human race,” wrote the book reviewer for the Saturday Review.
Both Reader’s Digest and Ladies’ Home Journal excerpted Karen, which was translated into about a dozen languages. Marie Killilea won two Christopher Awards, given to quality books, movies or TV shows. The awards were established by the Christophers, a group founded by a Maryknoll priest.
The two books were particularly popular at Catholic schools. In the 1950s and for decades afterward, the Karen book, with its blue cover, its image of a smiling girl in pigtails and the tagline “She Lived a Miracle!” was almost as ubiquitous in Catholic-school classrooms as pencil sharpeners and the American flag.
Karen was the second of four children of Marie, a homemaker, and James, who worked for the New York Telephone Co. Active in their parish, the family gathered around the TV set to watch Archbishop Fulton Sheen’s Life Is Worth Living. Neighborhood children in homes without TVs also joined the family to view the popular show.
The Killileas often were met with hostility when out and about with Karen. Many people then associated physical disability with mental or even moral deficiency. Once while traveling in Kentucky, a woman assailed them: “Only bad, dirty people would have a child like that.”
Karen’s parents were proud of her, just as they were proud of their other children, said Viltz. “We’d go to the beach. Karen would be playing in the sand and splashing in the water. My parents didn’t hide her,” she recalled.
Marie’s two books inspired numerous parents whose children had disabilities to expect them also to thrive. Many others wrote the Killileas to tell them that they became a nurse or therapist because of the books. Other readers built clinics, donated money or volunteered for those with disabilities.
The books tapped into a pent-up demand for change regarding society’s response to those with disabilities. “It was like a spontaneous combustion,” Marie Killilea wrote in the foreword to the 1983 edition of Karen. “Parents all over the country were in the throes of the agitation that brings the seed to flower.”
Leading the charge was the mom and homemaker who became an effective disability-rights advocate. She was a frequent presence at the New York Capitol in Albany, pressing for legislation to support those with disabilities. Banding together with other parents who had similar concerns, she helped found Cerebral Palsy of Westchester in New York and the United Cerebral Palsy Association.
The good fight she fought can be seen today in the vitality of the disability agency in Westchester. “There are so many prime examples here of success. So many [people with disabilities] are integrated into their communities,” said Linda Kuck, executive director of Cerebral Palsy of Westchester.
Born almost 40 years after Killilea, Karin Willison of central Indiana was given Karen to read by her mother when she was a young girl in the 1980s. Deprived of oxygen at birth, Willison, too, suffered from cerebral palsy. The book introduced her to “my soul sister,” she said. “It transformed me.”
“She was such an inspiration. Our experiences were so similar,” says Willison, who blogs about issues related to disability. Killilea was someone to aspire to be like. “She lived life on her own terms. That’s all you can ask for. She was happy and fulfilled. She made her own choices.”
Raised Presbyterian, Willison took note of the importance of the Killilea family’s Catholic faith. “It was apparent to me Catholicism was very caring and very respectful of people with disabilities,” she said.
Throughout her life, Karen Killilea was adventurous. She trained dogs, particularly Newfoundlands, much larger than her. She sang in a choir at a Lutheran church. (That was because of convenience. She was a regular Massgoer at the retreat house.) She met semi-privately twice with Pope Paul VI in Rome. She also hopped on a plane on occasion to visit her sister in Illinois.
As an adult she mostly stayed out of the spotlight but kept the same positive attitude she had as a child. “She was incredible. She had such a can-do attitude,” said Viltz. "She never said she was handicapped. She said she was ‘permanently inconvenienced.’ ... She was the most important person in my life.”
Jay Copp writes from La Grange Park, Illinois.