Paul Spooner Helped Make Independent Living A Reality For Me:

Paul Spooner, a longtime disability advocate whose work has helped thousands of people in Massachusetts, died unexpectedly early Saturday morning after a brief illness and hospitalization. He was 66 years old.

Spooner had a form of muscular dystrophy since childhood and used a power wheelchair. His 40 years of advocacy included being on the White House lawn when the Americans with Disabilities Act was passed in 1990.

Spooner had served as executive director of the Metrowest Center for Independent Living in Framingham since the early 1990s. He was a former president of the National Council of Independent Living and a dedicated advocate of legislation that improved the lives of individuals with disabilities. He helped develop legislation that affected employment, housing, transportation, and health care.

According to Bill Henning, executive director of the Boston Center for Independent Living, Spooner’s “crowning achievement” was his work expanding the Personal Care Attendant program, which he considered essential to helping disabled individuals to live independently in their communities. The MassHealth program offers funds for people with disabilities to hire attendants to help them with daily living activities, including getting out of bed, dressing, taking medication, and eating.

I am one of the thousands of Massachusetts residents who rely on the PCA program. I have received PCA services for over a decade. Two years ago, I moved into my own apartment. My PCA provides around-the-clock support. Moving out would have been impossible without the PCA program. Without it, many disabled people could be forced to live in nursing homes or other residential settings.

Henning noted that the program currently has more than 40,000 participants, up from about 3,000 in the early 1990s. As a result, Paul has contributed significantly to the independence of at least 40,000 people with disabilities in the state. Spooner worked to improve personal care attendants’ working conditions. In the early 2000s, he played a crucial role in developing legislation that allowed PCAs to unionize.

My life has been impacted deeply by Paul’s tireless advocacy for those with disabilities. Without people like him, my life wouldn’t be as it is today. He will be remembered as a key advocate for thousands of Massachusetts citizens with disabilities. Thank you for your advocacy and dedication, Mr. Spooner; I am forever grateful to people like you.


Smith, Meghan. “Disability Community Mourns the Death of ‘Fierce’ Advocate Paul Spooner.” WGBH, WGBH Educational Foundation, 11 Oct. 2022,

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