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Paul Spooner, advocate who expanded opportunities for the disabled, dies at 67

Paul Spooner spoke at the Personal Care Attendant Rally for Overtime demonstration outside the State House in 2016.Sue Rorke/MetroWest Center for I

When Paul Spooner was diagnosed as a boy with a form of muscular atrophy and left unable to walk, he had the good fortune to be part of a family that insisted he could still do whatever he wanted.

“My parents never really treated me as having a disability that limited my abilities,” he said in an interview for the Massachusetts Tales of Independence website.

So instead of mourning the loss of certain physical abilities, “I volunteered. I became an advocate. I participated in civil rights demonstrations. I got really involved in the early days of the Massachusetts disability programs and disability movement.”

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A powerful voice for those with disabilities, and the executive director of the MetroWest Center for Independent Living for 30 years, Mr. Spooner died Oct. 8 in Beth Israel Deaconess Hospital in Plymouth, just a couple of days after telling those close to him that he wasn’t feeling well and should check into a hospital.

He was 67 and lived in Taunton. Decades ago, a doctor had predicted he wouldn’t live past 30.

“Paul Spooner passionately lived disability rights. It defined him and he helped define the cause,” said Bill Henning, executive director of the Boston Center for Independent Living.

Among the most significant legacies left by Mr. Spooner, who began his advocacy work in his 20s, is that he “was one of the biggest champions of the state’s Personal Care Attendant program, relentlessly speaking out for enrollees and their right — and it was his right, too, as a PCA user — to control their personal care,” Henning wrote in an e-mail.

Over the course of decades, Mr. Spooner “worked with and spiritedly challenged advocates and state policy-makers, helping the program grow into one of the most successful independent living programs in the US,” Henning added.

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He said that statewide, about 40,000 people whose lives are fuller and less restricted because of their access to personal care attendants “owe some element of their independence to Paul.”

“I always say that he’s an advocate’s advocate,” said Joe Bellil, board president at MetroWest Center for Independent Living. “He’s the person you want to have by your side when you’re trying to get some legislation passed. He’s the one who’s going to push it more than anyone else.”

While working as executive director at the MetroWest Center in Framingham, Mr. Spooner served at various times as president and vice president of the National Council on Independent Living, and as a board member of the National Rehabilitation Association. He also had been the chair and vice chair of the Massachusetts Statewide Independent Living Council.

“When I became president of the board, we always had an understanding that we were going to share Paul, if you will,” Bellil said of Mr. Spooner’s work at the center. “Paul was always going to do advocacy. He did it well and people needed him.”

Mr. Spooner also found time to speak with those who were born with disabilities or who, like him, found themselves confronting a life-changing diagnosis at an early age.

“The best sense of reward I get is talking, particularly to young kids with disabilities, about understanding that they have the potential to do just about everything or anything they set their mind to,” he said in the Massachusetts Tales of Independence video.

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“I was taught that from my parents, and I really didn’t succumb to some of the negative stereotypes of having a disability,” Mr. Spooner said. “But that’s an always present issue even to this day, with all of the legislation and protections we have.”

The younger of two siblings, Mr. Spooner was born on April 17, 1955, in Honolulu, when his parents were teachers in Hawaii.

His mother, Margaret Andrews Spooner, taught social studies, and his father, William Merton Spooner, taught math.

His parents’ work then took them to Japan, where “my sister and I spoke English and Japanese,” he said in the Tales of Independence interview, and he was 7 when his father landed a job in Switzerland.

It was there, Mr. Spooner recalled, that “my disability began to show up in complications with walking.”

His family decided he should live in Brockton with his paternal grandparents to be close to good medical care. Despite the treatments, some of which Mr. Spooner recalled as “really archaic,” his condition worsened and he ended up permanently disabled and unable to walk.

Homeschooled initially, he eventually spent two high school years at the Massachusetts Hospital School in Canton.

Mr. Spooner graduated in 1981 from what was then Southeastern Massachusetts University with a bachelor’s degree in sociology and political anthropology. In 1989, he received a master’s in rehabilitation counseling from Assumption College.

Through the 1980s and into the early 1990s, until he became executive director of the MetroWest Center, Mr. Spooner’s work included positions at the Massachusetts Hospital School, Boston University School of Medicine, and a Brockton agency, in each case helping those living with disabilities.

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He and Winifred McGraw became a couple 43 years ago.

“When I was first dating him he was going to college,” said McGraw, an executive assistant at the MetroWest Center. “You didn’t look at him and see a disability. You just saw this massively dynamic person. You wanted to be around him to see what happened next.”

Though Mr. Spooner is best known for his advocacy and leadership, she said, “he also found time to just be himself and do the things that brought him joy, like traveling around the country, and camping, and photography.”

Mr. Spooner also ensured that photography would be part of the center’s new offices, which the agency moved into in late September.

Walking into the offices, people see two walls featuring photos of those who have been involved with disability rights advocacy — “Paul would call them the dinosaurs of the movement,” said Rose Quinn, the longtime assistant director of the center.

Through oral histories and photos, Mr. Spooner wanted to preserve those memories “so the struggle would not be forgotten by the new generation,” Quinn said.

The photo display includes a shot of the signing, on the South Lawn of the White House, of the Americans With Disabilities Act on July 26, 1990, an event Mr. Spooner attended.

“To this day I still feel like July 26 is my Fourth of July,” he said in the video interview, “because that’s really when I, as an American, got my full civil rights to be an American in this society.”

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A memorial gathering was held Saturday for Mr. Spooner, whose only immediate survivor is Wini McGraw, his longtime partner.

Mr. Spooner, who was appointed by state Senate President Karen Spilka to serve on the state’s new Commission on the Status of Persons with Disabilities and became treasurer of the group, recalled that he was introduced to the idea of fighting for civil rights while watching the evening TV news with his grandparents when he was a boy.

Until his final days, he kept up his own civil rights advocacy for those with disabilities.

“We face oppression, we face discrimination, we face racism, we face ableism — we face all kinds of barriers,” he said in the video interview. “And the most important thing I do every day is hopefully help people understand that as a group, we can fight that.”


Bryan Marquard can be reached at bryan.marquard@globe.com.