Disability community mourns the death of ‘fierce’ advocate Paul Spooner

Paul Spooner, a longtime disability advocate whose work is credited with improving the lives of thousands of people in Massachusetts, died unexpectedly early Saturday morning after a brief illness and hospitalization. He was 67.

Spooner had a form of muscular atrophy since he was a child, and he used a power wheelchair. His 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 in 1990. He said he considered that day, July 26, 1990, his 4th of July because he finally felt like he reached a form of equality that had been denied disabled people for so long. But he felt there was still much work to be done.

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

Spooner's “crowning achievement,” according to Bill Henning, executive director of the Boston Center for Independent Living, was his work growing the Personal Care Attendant program, which he saw as instrumental to enabling disabled people to live independently in their communities. The MassHealth program provides funding to people with disabilities so they can hire attendants to assist with daily living activities like getting out of bed, dressing, taking medication and eating.

“In the early 90s, this program had 3,000 people on it and now has over 40,000 people on it,” Henning said. “So there's at least 40,000 people with disabilities in the state who can trace much of their independence to Paul.”

Henning had been Spooner’s peer and collaborator in disability policy for almost 40 years, and notes that while Spooner was always “on the front lines” of every single protest, he was also in the backroom making deals and ironing out the details of complicated legislation.

Spooner was “fierce” and determined in his advocacy, yet collaborative and practical when it came to working with public officials, according to Henning. He “basically marched up to the offices of [Governors] Bill Weld, Paul Celucci, Mitt Romney, Deval Patrick and Charlie Baker and demanded that they rescind cuts,” Henning said. “And ultimately everyone ended up working with Paul … He collaborated, he became partners with them.”

Spooner’s advocacy extended to improving working conditions for personal care attendants, and he was instrumental in writing legislation to allow attendants to unionize in the early 2000s.

“That's something we [the Boston Center For Independent Living] thought was really terrific … but it was a jolt to lots of people,” Henning said. “And Paul crossed the bridge between the Patrick administration, SEIU and the consumer community.”

Spooner grew up in the 1960s, well before the ADA was passed, when he would regularly encounter buildings without ramps or be barred access to public spaces. He attended Massachusetts Hospital School at a time when education for kids with disabilities was still segregated.

“He didn't go to a regular school. They put kids in wheelchairs for no reason other than disability in a hospital,” Henning said. “He didn’t like it. Paul was a rebel — I think that was very formative for him as well.”

Spooner witnessed how the language of the civil rights movement — of dignity, fairness, equality — could be extended to disability justice.

“There was this coming of age, as a teenager, there was this hangover of all the protests, of the justice demands of the 1960s, of the civil rights marches. And I know that impacted him,” Henning said.

Spooner carried the lessons from that era with him throughout his career and passed it on. 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.

“I think he was very aware [that] the people who'd been involved since the 1970s, that that generation of folks was predominantly white and predominantly male,” Green said. “And I think Paul was one of a handful of leaders to really say, 'If you are not white and not male, come in too, and we need you and you are the next generation of leaders and you are the ones who I will support.'”

One person who Spooner influenced was Keith Jones, a local musician and advocate who collaborated with Spooner on issues like PCA unionization, health care policy, the cost of transportation and voting access.

Jones said he is still processing the news of Spooner’s sudden death, and reflecting on 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, whatever the momentum we’ve gained with Paul won’t be lost?” Jones wondered. “Paul was an icon … I have learned a lot from him and I have tried to pass that on.”

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

“I think everyone was in awe of Paul,” Green said. “He could simultaneously balance his incredible expertise on things that are, you know, public policy that's very confusing and complex, with an incredible humanity and a real sort of forward looking vision.”

Spooner was a commissioner and treasurer of the state's new Commission on the Status of Persons with Disabilities, established in 2020 to bring together the disability community and make legislative recommendations on issues like affordable housing, transportation and workforce development.

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

Rep. Denise Garlick of Needham, chair of the commission, said, “Paul was instrumental in creating a vision for our Commission that would modernize accessibility rights in Massachusetts. He was driven, passionate, and strategic in his advocacy, where his voice impacted policy and programs that improved the lives of countless individuals with disabilities."

According to Henning, Spooner's priorities at the time he passed included shoring up funding for the attendant program, increasing funding for independent living centers, passing legislation to change the rules of the State Architectural Access Board to require more accessibility at home and in workplaces and supporting the alternative housing voucher program to help people with disabilities get affordable housing.

“The general public doesn't know about [these issues], but they're the meat and potatoes of what drives independence and quality lives for lots of people with disabilities,” Henning said. “That's what he was about.”

Editor's note: This story has been updated to reflect Spooner's correct age. We regret the error.