Growing up in Deborah Norton’s family meant you were expected to give back to the community. Her parents participated in a constant rotation of charitable activities on Martha’s Vineyard. But Norton, now a Brookline resident, never thought she would be leading a statewide non-profit decades later.
Last May, Norton, age 65, was named board president of The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities. Since joining the board in 2011, Norton has been pushing for better employment and housing resources for adults with disabilities — a quest inspired by her own experience.
Her 26-year-old adopted son, Sam, has an intellectual disability, and his resources dwindled after graduating from Brookline High School at age 22 — the age at which Massachusetts no longer provides free public education to individuals. While schools often provide a slew of services for those with special needs, housing and employment opportunities are hard to come by later in life.
Many like Sam find it difficult to work a normal 8:30 a.m. to 5 p.m. position, she said, recalling his stint as a janitor. He ended up quitting because the late-night cleaning shifts became too lonely for him to handle.
“There’s a misconception that it’s easy for these kids to get a job,” said Norton, noting that the more her son earns, the less he will receive in federal disability payments. “Sam is terrified of having to use a cash register.”
Without adequate resources, families feel like they are alone in supporting their loved one, she said. Is their child with special needs going to live in a group home or not? What’s going to happen when the family can’t take care of the person anymore? These are the worries that run through parents’ minds, Norton said.
Among her other advocacy work, Norton strongly supports “Nicky’s Law,” state legislation that would create a registry of individuals accused of abusing those with disabilities. She also helped The Arc overhaul its accounting system during her time as board treasurer.
Norton’s journey to this point was unexpected, rewarding, and, at times, heart-rending. In 1990, she and her husband adopted a baby girl from Korea. Two years later, they went through the process again when they adopted Sam, who was 3-and-a-half-months and also from Korea.
Norton suspected something was different about Sam from the start, but her pediatrician told her she was simply nervous. When Sam turned 3, he was enrolled in day care. On the third day, the teacher called Norton, telling her, “I don’t think Sam can learn.”
A trip to Boston Children’s Hospital told Norton what she already suspected — Sam had a developmental disability. Doctors didn’t know why, but Norton said the only thing she knew to do from that point was to push on.
“We’re survivors, not saints,” Norton said of parents like her. “We didn’t go out looking to adopt children with disabilities. We needed to figure out a way forward.”
Taking care of the children was all-consuming, but, as they got older, Norton began to long for service opportunities more tangible than dropping off cans at the food pantry, she said. Her position as chief information officer and senior vice president for operations at Harvard Pilgrim Health Care also required her to be significantly involved in community service. Conveniently, a spot simultaneously opened up on The Arc’s Board of Directors.
“She is knowledgeable about the service system,” said Leo Sarkissian, executive director at the organization. “From the day she stepped on the board, she added significant value from a problem-solving perspective.”
Sarkissian said Norton’s experience raising Sam has resulted in a “well of compassion” for others in similar positions.
Sam currently lives on his own in Brookline around the corner from Norton and her husband. They are slowly, but surely, teaching him life skills, such as budgeting, doing laundry, and operating the stove.
Norton hopes Sam applies for a kitchen job, as he loved volunteering during high school at the Boston University Dining Commons.
Above all, Norton said she hopes Sam — and others with disabilities — can achieve a sense of belonging and responsibility.
Ysabelle Kempe can be reached at firstname.lastname@example.org.