Paul Spooner, advocate who expanded opportunities for people with disabilities, dies at 67

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A powerful voice for people with disabilities and executive director of the MetroWest Center for Independent Living for 30 years, Mr Spooner died on October 8 at Beth Israel Deaconess Hospital in Plymouth, just days after telling loved ones he would not wasn’t feeling well and should go to the hospital.

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

“Paul Spooner lived with passion the rights of people with disabilities. It defined him and he helped define the cause, said Bill Henning, executive director of the Boston Center for Independent Living.

One of the most important legacies left by Mr. Spooner, who began his advocacy work in his twenties, is that he “was one of the greatest champions of the state’s personal care attendant program, tirelessly defending registrants and their right — and it was his right too, as a PCA user, to control his personal care,” Henning wrote in an email.

Over the decades, Mr. Spooner “has worked with and vigorously challenged state advocates and policymakers, helping the program become one of the most successful independent living programs in the United States,” Henning added.

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

“I always say he’s a lawyer for a lawyer,” said Joe Bellil, chairman of the board of the MetroWest Center for Independent Living. “He’s the person you want to have on your side when you’re trying to get legislation passed. He is the one who will push him more than anyone else.

While working as Executive Director at the MetroWest Center in Framingham, Mr. Spooner was several times President and Vice President of the National Council on Independent Living and a member of the Board of Directors of the National Rehabilitation Association. He had also served as president and vice president of the Massachusetts Statewide Independent Living Council.

“When I became chairman of the board, we always understood 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 has also found time to speak with those who were born with a disability or who, like him, have faced a life-changing diagnosis at a young age.

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

“My parents taught me that and I really haven’t succumbed to some of the negative stereotypes of having a disability,” Spooner said. “But it’s an ever-present problem, even to this day, with all 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 mathematics.

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 employment in Switzerland.

It was there, Mr. Spooner recalls, that “my disability began to manifest itself in gait complications”.

His family decided he should live in Brockton with his paternal grandparents to be close to good medical care. Despite treatments, some of which Mr Spooner recalled were ‘really archaic’, his condition worsened and he was left permanently disabled and unable to walk.

Initially homeschooled, he eventually spent two years of high school at Massachusetts Hospital School in Canton.

Mr. Spooner earned a bachelor’s degree in sociology and political anthropology in 1981 from what was then the University of Southeast Massachusetts. In 1989, he earned a Masters in Rehabilitation Counseling from Assumption College.

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

He and Winifred McGraw became a couple 43 years ago.

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

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

Spooner also assured that the photography will be part of the centre’s new offices, which the agency moved into at the end of September.

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

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

The photo exhibit includes a photo 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 4th of July,” he said in the video interview, “because that’s really when, as a as an American, I got all my civil rights to be an American in this society.”

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

Spooner, who was nominated by State Senate Speaker Karen Spilka to serve on the state’s new Status of Persons with Disabilities Commission and became the group’s treasurer, recalled that he had was introduced to the idea of ​​fighting for civil rights while watching the evening news with his grandparents when he was little.

Until his last days, he continued his own defense of the civil rights of people with disabilities.

“We face oppression, we face discrimination, we face racism, we face ableism – we face all kinds of obstacles,” 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 this.”


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

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