Friend’s life recalled in new book

JoAnne Putnam was an instructor in the special-education department of the University of Maine at Farmington in 1985 when she met one of the most remarkable women she would ever have the privilege to know.

The woman was carrying schoolbooks like any other college student on campus that day, yet she appeared to Putnam to have some of the physical characteristics traditionally associated with Down syndrome. Her name was Paige Barton, Putnam learned, and she was majoring in early childhood education. But what made Barton different from every other student, different from anyone that Putnam had ever met before, was the extraordinary route that had led her to this campus.

Barton, a woman of average intelligence who had been misdiagnosed with Down syndrome at birth in 1951, had endured nearly 20 years of loneliness, confusion and despair as a resident of institutions for the mentally retarded. Having lived so long among people who were moderately or severely retarded, Barton had even adopted elements of their behavior in order to fit in.

Finally, at the age of 36, she underwent genetic testing in Bangor that revealed she was not mentally retarded at all, but rather was born with trisomy 18-mosaic, a rare genetic disorder caused by an extra chromosome in her cells.

In its classic form, the disorder kills 90 percent of its victims by their first birthday. Only 7 percent of Barton’s cells were affected, however – enough to cause some physical abnormalities at birth but not enough to cause retardation.

“The more I learned about Paige, the more amazed I was at all that she had managed to overcome,” said Putnam, who is now a professor of teacher education at the University of Maine at Presque Isle.

Barton went on to earn two college degrees and to become Maine’s first consumer advocate for people with developmental disabilities. She became a regular guest on the “Today” show, while also traveling throughout Maine and the country to speak to gatherings of handicapped people and health professionals about the dangers of labels and the unfair limitations they can impose.

Barton died in 1999, at the age of 47, after suffering from several painful physical complications associated with the genetic disorder. Putnam, who had been working on a biography of Barton at the time, felt as if a light had gone out in her life.

“She had been my dear friend over the years, and her death was very hard on me,” Putnam said. “We start out in this profession thinking that we’re going to be teaching others, but sometimes they’re the ones who turn out to be the most powerful teachers. Paige was certainly that for me.”

Shortly after Barton’s death, Putnam was diagnosed with an aggressive form of cancer that would ultimately require several major surgeries. In her moments of greatest fear, doubt and self-pity, however, she would immerse herself in the writing of Barton’s life – as much for the strength and comfort it gave her as for the inspiration she hoped others might one day take from the book’s tough, resilient and funny subject.

“Beyond All Expectations: The Story of Paige Barton,” was published in August by the University of Maine Center for Community Inclusion. In the book’s foreword, former Gov. Angus King writes of Barton: “Paige touched many lives and is sorely missed. Her life’s work and vision lives on, reminding us all to keep at the struggle to live up to our true capacities and never to give up on our dreams.”

It is that message of integrity and hope that Putnam believes will touch anyone who reads Barton’s compelling life story.

“Paige had such a wonderful, positive attitude that allowed her to make something of her life despite all those years she spent in institutions,” said Putnam. “She knew just what she wanted out of life, and it didn’t matter that everyone said she could never amount to anything or even think about going to college. She had an incredible tenacity. She made goals, went after them with an invincible spirit and a rambunctious humor, and ignored those who tried to stop her. Paige was a truly remarkable person whose message could make a big difference in many people’s lives.”

For a copy of “Beyond All Expectations,” call 581-1236 or visit the publisher’s Web site at www.ume.maine.edu/cci/dissemination/beyond