Massachusetts’ most stalwart disability rights advocate Paul W. Spooner died unexpectedly on October 8th, after a brief hospital stay. His life partner, Winifred McGraw, was by his side. He was 67 and had been a resident of Taunton for the last 28 years.
Paul was born in Hawaii and lived in both Japan and Switzerland, where his parents taught in the American schools, before returning to the United States at the age of 8 to be treated for a medical condition that ultimately left him with a permanent disability. He went on to graduate high school from the Massachusetts Hospital School in the class of 1973. He earned an undergraduate degree from Southeastern Massachusetts University (SMU) in 1981 and a Masters Degree in Rehabilitation Counseling from Assumption College in 1989.
The roots of Paul’s disability advocacy were born during his time at SMU, where he made very strong connections with students who had returned from the Vietnam War. He saw the crossover effects of being a Veteran and being a person with a disability and wanted to do something to improve access to education for all.
While going to school at SMU he began volunteering for a disability agency and became an original incorporator of Independence Associates in Lakeville, MA. He eventually left the board and became an employee, holding several positions before leaving in 1992 to work for the independent living center in Framingham, now known as the MetroWest Center for Independent Living (MWCIL) as executive director, a position he held until the time of his passing.
During his time at MWCIL, he also held the positions of Vice President and President of the National Council on Independent Living, Board Member of the National Rehabilitation Association, President of the National Association of Independent Living, Chair & Vice-chair of the Massachusetts Statewide Independent Living Council, Communications Director for the Massachusetts Association of Independent Living Centers, Editorial Board Member of the Journal of Sexuality and Disability, Member and Vice-chair of the Massachusetts Personal Care Attendant Workforce Council, Board Member of the Human Service Providers Council, and Commission Treasurer of the Massachusetts Commission on the Status of Persons with Disabilities.
During his 3 decades at MWCIL, he worked hard in the trenches to see legislative decisions come to fruition that not only improved the lives of people with disabilities both locally and nationally, but also for the caring and dedicated personal care attendants who remain instrumental in insuring that people with disabilities remain in the community as full and equal participants. His temperament garnered him respect from his peers as well as with the cascade of legislators he worked with over the years. His crowning success was just confirmed on September 28th when word came down that a proposed expansion of the CommonHealth program was approved by federal officials. This will allow eligible individuals with disabilities who have worked in Massachusetts to retire without the loss of their major health insurance program. Paul will not see the benefit of this program for himself, but he’s sure to still be smiling over this success for others. Paul was never in this game for any type of accolade or personal gain. His mission was solely to insure a better existence for all people with disabilities.
When Paul took a break from his work he enjoyed traveling, was an avid photographer, bird watcher and lived for anything trains and military history. His interest in these pursuits was developed at a young age and shared frequently with his dad before his passing.
Obituary from Russell and Pica Funeral Home.
A video of Paul speaking about Independent Living, as well as a photo slideshow of Paul’s life can be found at MATalesOfIndependence.net.
Accomplishments and Advocacy
- Present at the signing of the Americans with Disabilities Act on the White House lawn in 1990
- MA Personal Care Attendant Program – Paul 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. 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. (Source: Bill Henning quote in the Boston Globe)
- President and Vice President of the National Council on Independent Living
- Board Member of the National Rehabilitation Association
- Chair and Vice Chair of the MA Statewide Independent Living Council
- Treasurer of the (established 2020) Commission on the Status of Persons with Disabilities
- Recently helped pass legislation to create a special commission to study the history of state institutions for people with intellectual or developmental disabilities (2022).
- Championed the recent expansion of the CommonHealth program that was approved by federal officials (2022).
- With Paul’s direction, MetroWest Center for Independent Living has helped several MA advocacy organizations, including Dignity Alliance MA and Second Thoughts MA.
- Paul developed MA Tales of Independent Living – a series of videos where people with disabilities share their varied journeys to successful lives. Each person champions Independent Living. Bill Allan interviewed and created each video.
- Boston Globe, October 15 – Paul Spooner, advocate who expanded opportunities for the disabled, dies at 67
- Joe Bellil, board president, MetroWest Center for Independent Living – “I always say that he’s an advocate’s advocate. 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.”
- 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,” said Bill Henning, executive director of the Boston Center for Independent Living. 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.
- Framingham Source, November 7 – Massachusetts Senate Passes Legislation To Help People With Disabilities Live Independently
- “I have fought my entire career to make Massachusetts a more inclusive place for people of all abilities to live, work, and play,” said Senate President Karen E. Spilka (D-Ashland). “It is especially fitting that the Senate has passed these bills on the same day that we adjourn in memory of Paul Spooner, a committed and tireless disability rights and inclusion activist working in MetroWest and a dear friend of mine. By helping us move closer to our goal of ensuring that all people have opportunities to live independently, we honor Paul’s legacy and make the Massachusetts a more compassionate and accessible Commonwealth. “
- WGBH News, October 11 – Disability community mourns the death of ‘fierce’ advocate Paul Spooner
- Alex Green, a public policy professor at the Harvard Kennedy School of Government says Spooner had recently become a “driving force” behind his own disability rights work, most recently helping pass legislation to create a special commission to study the history of state institutions for people with intellectual or developmental disabilities. Green observed that Spooner was always thinking about how to sustain and diversify the next generation of leaders.
- Framingham Source, October 10 – Paul Spooner, Executive Director of MetroWest Center For Independent Living
- Bill Henning of Boston Center for Independent Living – Just last week Paul reveled in the expansion of the CommonHealth program he’d championed with MassHealth that was approved by federal officials. His fingerprints were on too many bills, programs, civil rights complaints, and other advances for people with disabilities to count.”
- Alex Green – These last few years have been a rupture of time in ways that I often struggle to make sense of. But I know moments and people who have transformed my life in ways I can never imagine, and those things have been a source of something so essential to my survival, I can hardly describe it…. I had the great opportunity to meet Paul, whose influence on me is something I’ll struggle to give adequate words to for some time. He changed me profoundly and I feel a deep gratitude for the chance to have gotten to know him even if the time was short.
- John Kelly, Second Thoughts director – Paul was the first speaker for the reconstituted Boston Disability Commission’s ADA celebration in 2011, and as a pca user himself, he led efforts to improve personal care options. His most recent victory was helping persuade Medicare to allow, for the first time, working disabled people to retire without losing access to CommonHealth (Medicaid buy-in). Before this crucial change, I had been told that the only way to stay on CommonHealth was to keep working until I die. Paul’s work made my life and many other people’s lives better…That’s the mark of an effective leader! Thank you (Read John Kelly’s entire tribute)
- Bill Henning, Executive Director of Boston Center for Independent Living – Just last week Paul reveled in the expansion of the CommonHealth program he’d championed with MassHealth that was approved by federal officials. His fingerprints were on too many bills, programs, civil rights complaints, and other advances for people with disabilities to count.
- Paul Lanzikos of Dignity Alliance, MA – He is irreplaceable. He was one of the most effective advocates for human rights and basic decency for all and especially those who have a disability.
- Michael Weekes, President and CEO of the Providers Council – Paul, through his compassion and deeds, was an essential force of effective advocacy in the disabilty community and focused on “ability” rather than disability.
- Sad News from MetroWest Center for Independent Living – Most people in the disability community have interacted with Paul, and even more have benefited from his advocacy for disability services and rights. Paul quickly switched from in-person to zoom when COVID-19 hit and stayed just as effective in fighting for legislative action. He fought for a seat at the tables where his astute vision, attention to detail and careful strategic ideas led to many successes in improving the lives of people with disabilities.
- Not Dead Yet – Mourning the Loss of Paul Spooner, ED of MetroWest CIL
- In Not Dead Yet’s early years in the late 1990s, Paul was President of the National Council on Independent Living and helped ensure that our message against the “better dead than disabled” mindset was heard by disability advocates at hundreds of CILs. This led to the NCIL membership’s adoption of a formal Resolution Opposing the Legalization of Assisted Suicide in 1997.