As Helen Jencks Featherstone cared for her only son, Jody, who could neither see, nor speak, nor walk during the nine years he was alive, she contemplated what his inner life was like, and how his presence was changing her family forever.
“Because he is unable to tell us about his world, each of us in the family constructs our own version of it,” she wrote in “A Difference in the Family: Living with a Disabled Child,” her 1980 book. “We spin it, like spiders, from our own insides.”
Already a writer and an educator before her son was born almost completely blind and with cerebral palsy, Ms. Featherstone drew from her family’s experience for a book that became a touchstone for parents of children with disabilities and for other families as well.
A retired education professor who had taught at Harvard, Michigan State, and Brandeis universities, Ms. Featherstone was 76 when she died of cancer June 16 in her Gloucester home. She and her husband, Jay Featherstone, a writer and educator, divided their time between Gloucester and a Cambridge residence.
“Jody altered our lives and our perceptions of what matters. We saw the world differently because we loved him and shared his home,” Ms. Featherstone wrote of the “special education” the family received by virtue of raising a child with severe disabilities.
“This book is about that education,” she continued.
“It is about us, and people like us, more than it is about Jody, because Jody remains partly a mystery. He cannot talk. He cannot see. He cannot move about and explore the world. He cannot even play with toys, although he can smile and laugh and enjoy treats. It makes me sad to write this, but it is almost impossible for us to imagine his world. Perhaps for that reason, I am more aware of the ways Jody has reshaped our understanding than of the ways we have reshaped his.”
New York Times book critic John Leonard praised her book, calling it “calm, wise, unflinching, and heart-mending.”
And while Ms. Featherstone’s insights drew readers across the country, “A Difference in the Family” was one of many lessons she offered as an elementary school teacher, a writer, and a professor who taught aspiring teachers at the college and graduate school levels.
She also was the founding editor and chief writer of two bimonthlies, the Harvard Education Letter (1985-87) and Changing Minds, at Michigan State (1990-98).
In Michigan, “I have become increasingly intrigued by the challenge of helping our undergraduate students learn to think of mathematics as an approachable subject and to teach it in ways that engage children’s minds,” Ms. Featherstone wrote in 2001 for the 35th anniversary report of her Radcliffe and Harvard college class.
She accomplished all of this professionally while carrying on through personal challenges that were not limited to the years Jody was alive before he died in 1981 — trailing lasting sorrow.
“His family — my family — was grieving when I was born,” Miranda, the youngest of the Featherstone daughters, who was born two years after Jody died and now lives in Pawtucket, R.I., wrote in a Yale Review essay published last year.
In 1984, months after Miranda’s birth, Ms. Featherstone was diagnosed with Hodgkin’s lymphoma, while the family lived in Newton.
“She and the rest of us — but she probably more than anyone — went through a terrible year of chemotherapy and radiation,” her husband, Jay, wrote in 1987 for the 25th anniversary report of his Harvard class. He would be successfully treated for cancer several years later, while he and Helen were teaching in Michigan.
Helen’s treatment for Hodgkin’s “worked, thank God, but it was an ordeal I wouldn’t wish on anyone,” Jay added. “I’m proud of the way my brave family stands together in trouble. We could do with less trouble, though.”
The youngest of three siblings, Helen Wilmer Jencks was born in Baltimore on July 29, 1944.
Her father, Francis Jencks, was an architect who designed the house in which she grew up. Her mother, Elizabeth Pleasant Jencks, was passionate about ideas and thinking and helped her husband design the family’s home in Gloucester, where Ms. Featherstone and her husband lived part of their time in retirement.
Helen graduated from Bryn Mawr School in Baltimore before heading to Cambridge, where she received a bachelor’s degree in history and literature in 1966 from Radcliffe College. As an undergraduate, she wrote for The Crimson, Harvard’s student newspaper.
She also graduated from the Harvard Graduate School of Education with a master’s in 1967 and a doctorate in 1973, though she preferred not to use Dr. as a title.
While at Radcliffe she met Joseph L. Featherstone, who is known as Jay and was a college roommate of one of her older brothers. They married in 1966, a few months after she graduated.
Mr. Featherstone is a poet and former New Republic writer and editor, a former headmaster of the Commonwealth School in Boston, and a retired education professor — they both taught at Michigan State.
“They were a real duo in terms of their professional lives, and that was especially true in their work at Michigan State,” said their daughter Caitlin of Gloucester.
Early in their marriage, the couple wrote a column together for Working Papers, a radical magazine.
Though Ms. Featherstone’s work was rooted in serious subjects, she “was many things. One of them was very funny,” Caitlin said. “She was always looking for a sort of wry take on things.”
Cited once for skinny-dipping off a Wellfleet beach in her 70s, Ms. Featherstone had the ticket framed and displayed it on the wall of her study.
“What I should be doing is calling your mother and reprimanding you for ogling old ladies on the beach instead of making sure the National Seashore is safe,” she teased the officer who wrote the ticket.
After she and her husband returned east from Michigan, Ms. Featherstone taught at Brandeis and collaborated with five women on “Smarter Together” before retiring from teaching in 2012.
“She was a real intellectual. She was always thinking about ideas,” Caitlin said. “Her daily conversation and her professional life were filled with theory and ideas and a kind of intellectual curiosity.”
In her final years, Ms. Featherstone began writing two novels for middle-school children, one of them about a 12-year-old girl with cerebral palsy.
“I have always loved reading and telling stories, and I have loved working on this novel,” she wrote about the latter, for her 50th anniversary class report. “It feels both adventurous and liberating.”
A service has been held for Ms. Featherstone, who in addition to her husband and two daughters leaves another daughter, Liza of Brooklyn, N.Y.; two brothers, Christopher Jencks of Wellfleet and Stephen Jencks of Baltimore; and five grandchildren.
As grandchildren expanded the family, Ms. Featherstone wrote to her college classmates in a class report that “there isn’t much I could say about the pleasures of grandparenting that most of you wouldn’t already know (or, indeed, would have been able to learn from a Hallmark card).”
She wrote that passage not long after she and Jay had taken the family — their daughters, their daughters’ spouses, the grandchildren — “to Paris for 11 days; it was beyond wonderful. We know how lucky we are.”
Bryan Marquard can be reached at email@example.com.