Disability community mourns death of ‘vicious’ defender Paul Spooner


Paul Spooner, a longtime disability advocate credited for his work improving the lives of thousands of people in Massachusetts, died unexpectedly early Saturday morning after a brief illness and hospitalization. He was 66 years old.

Spooner had been suffering from a form of muscular dystrophy since he was a child, and used an electric wheelchair. 40 years of advocacy spanned key moments in disability history, including being on the White House lawn when the Americans with Disabilities Act was signed into law in 1990. He said he considered that day, July 26, 1990, the Fourth of July because it finally felt like He reached a form of equality that was denied to the disabled for a long time. But he felt there was still a lot of work to be done.

Since the early 1990s, Spooner has been the executive director of the Metrowest Center for Independent Living in Framingham. He was a past president of the National Council for Independent Living, and a relentless advocate for improving the lives of people with disabilities through legislation affecting health care, transportation, housing, and employment.

According to Bill Henning, executive director of the Boston Center for Independent Living, Spooner’s “cropping achievement” was his work developing the Personal Care Facility Program, which he deemed useful for enabling people with disabilities to live independently in their communities. MassHealth provides funding for people with disabilities so they can designate attendees to help with activities of daily living such as getting out of bed, getting dressed, taking medication, and eating.

“In the early 1990s, this program had 3,000 people and now over 40,000 people are participating in it,” Henning said. “So there are at least 40,000 people with disabilities in the state who can trace a lot of their independence to Paul.”

Henning has been Spooner’s colleague and disability policy collaborator for nearly 40 years, and notes that while Spooner has always been “on the front lines” of every protest, he’s also been in the back rooms doing deals and ironing out complex legislation.

Spooner was “fierce” and determined in his advocacy, but was collaborative and pragmatic when it came to working with public officials, according to Henning. He’s basically walked into offices [Governors] Henning said Bill Weld, Paul Silucci, Mitt Romney, Deval Patrick and Charlie Baker had called for the cuts to be scrapped. “And in the end everyone ended up working with Paul… He collaborated and became partners with them.”

Spooner’s advocacy extended to improving working conditions for personal caregivers, and he was instrumental in writing legislation to allow attendees to join unions in the early 2000s.

“This is something we [the Boston Center For Independent Living] I think it was really cool…but it came as a shock to a lot of people,” Henning said. “And Paul crossed the bridge between Patrick’s management, SEIU, and the consumer community.”

Spooner grew up in the 1960s, long before the ADA, when he was regularly faced with buildings without ramps or denied access to public spaces. He attended Massachusetts Hospital School at a time when the education of children with disabilities was still segregated.

He did not go to a regular school. “They put children in wheelchairs for no other reason than being disabled in the hospital,” Henning said. “He didn’t like him. Paul was a rebel—and I think that was a formative factor for him, too.”

Spooner witnessed how the language of the civil rights movement – dignity, equity, and equality – could extend to disability justice.

“There was this era, when I was a teenager, there was a hangover of all the protests, the justice demands of the ’60s, the civil rights marches. I know that affected him,” Henning said.

Spooner carried and passed on the lessons of that era with him throughout his career. Alex Green, professor of public policy at the Harvard Kennedy School of Government, says Spooner has recently become a “driving force” behind his work on disability rights, which he recently helped pass. Legislation to establish a special committee To study the history of state institutions for people with intellectual or developmental disabilities.

Greene notes that Spooner has always been thinking about how to preserve and diversify the next generation of leaders.

“I think he was quite aware [that] People who have been involved since the 1970s, this generation of people has been mostly white and mostly male,” Green said. “And I think Paul was one of a handful of leaders who really said, ‘If you’re not white and you’re not male, come on too, and we need You are the next generation of leaders and you are the ones who will support me.”

One of Spooner’s influences, Keith Jones was a local musician and advocate who collaborated with Spooner on issues such as PCA unions, health care policy, transportation cost and voting access.

Jones said he’s still processing news of Spooner’s sudden death, and thinks about the importance of learning from the “elders” of the disability justice movement.

“Have we stacked the bench deep enough with young leaders or new leaders so that we don’t lose the momentum we gained with Paul?” Jones asked. “Paul was an icon…I learned a lot from him and tried to convey that.”

Spooner focused on the “post-ADA” generation of people born after the law was passed, and spoke to Green’s public policy students about disability rights.

“I think everyone was in awe of Paul,” Green said. “He can at the same time balance his incredible expertise in matters that are, you know, very confusing and complex public policy, with incredible humanity and a real kind of futuristic vision.”

Spooner was commissioner and new state treasurer Committee on the Status of Persons with Disabilities, It was established in 2020 to bring together the disability community and make legislative recommendations on issues such as affordable housing, transportation, and workforce development.

“If there was one in place who could really embrace the fullness of Paul’s vision and thinking and put it into practice, it would be that committee,” Green said.


“There are at least 40,000 people with disabilities in the state who can trace much of their independence to Paul.”

– Bill Henning, Executive Director of the Boston Center for Independent Living

Representative Dennis Garlick of Needham, chair of the committee, said, “Paul has been instrumental in creating a vision for our committee that will modernize access rights in Massachusetts. He has been driven, emotional, and strategic in his advocacy, as his voice has influenced policies and programs that have improved the lives of countless individuals. people with disabilities”.

According to Henning, Spooner’s priorities at the time the grant was awarded included supporting funding for the companion program, increasing funding for independent living centers, and passing legislation to change the rules of the State Architectural Access Board to require more access in the home and in the workplace and support an alternative housing voucher program to help people with disabilities. in obtaining affordable housing.

“The common people don’t know anything about that [these issues]but they are the meat and potatoes of what drives independence and the quality of life for so many people with disabilities,” Henning said.


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