The last major advancement in disability rights — the Americans With Disabilities Act — was signed into law more than 30 years ago. Longtime advocate Paul Spooner remembers that historic moment, and says his life is “100% better because of the ADA.” But he emphasizes there's much more to do.
While there has been some progress in recent years, disability advocates want to build on the momentum of the social justice reckoning that rippled through America last year to enact change in Massachusetts. Part of that work will be undertaken by the newly formed Commission on the Status of Persons with Disabilities, established by a 2020 law that aimed to expand equity and racial justice in Massachusetts. Historically, work on disability policy across the commonwealth has been fragmented, according to Spooner. He and other advocates believe the state commission presents an opportunity to unify efforts.
“We can all sit back and say, ‘Well, this disability commission is just legislative feel-good,’” Spooner said. “And I don't think it's that — I think it's much more about taking the opportunity we have now to really kind of move the needle forward.”
According to the commission’s first yearly report filed in October, 11.6% of Massachusetts residents ages 18-64 live with a disability. That includes a broad range of people, some of whom have multiple disabilities. Nearly half of the people in this group have ambulatory disabilities, 40% have cognitive disabilities and 38% have disabilities that affect their ability to live independently.
Spooner has experienced a form of muscular atrophy since he was a child, and he uses a power wheelchair. As a disability advocate for more than 40 years, he has witnessed some of the movement's turning points. He was a Massachusetts college student at the tail end of the Vietnam War, when he was mentored in political activism by returning veterans and members of the Black Student Union.
“The disability community had just really started to get mobilized and involved in our own civil rights,” he said in a Zoom interview with an American flag over his shoulder.
Now, Spooner is the executive director of the MetroWest Center for Independent Living in Framingham and brings that experience to his role as a commissioner on the new state agency.
The 23-member permanent, funded commission grew out of Rep. Josh Cutler's WorkAbility Subcommittee of the Massachusetts Legislature's Joint Committee on Children, Families and Persons with Disabilities.
"Individuals with disabilities are very often invisible ... and so they don't get to unite. I'm hoping this commission will help with that."- Rep. Denise Garlick
Kerry Thompson, the inclusion and accessibility development manager for the Disability Rights Fund, said the diversity of the commission is what makes it unique. “There are not many opportunities for activists with different disabilities to come together to work on addressing overall rights,” she said over email about why she became a commissioner.
Born in Louisiana, Thompson came to Massachusetts 20 years ago after searching for a state that had more opportunities and support for people like herself with deafblindness.
“Massachusetts is most certainly ahead of the rest of the country in terms of opportunities, but there is still so much work to be done,” she said.
That diversity can also come with challenges in accommodating people with different types of disabilities. For example, Thompson said at commission meetings she sometimes reminds people to identify themselves when speaking — a small action for people who are following along with different assistive technologies — and emphasizes the importance of pausing the meeting to allow American Sign Language interpreters to rotate.
Rep. Denise Garlick of Needham, chair of the commission, said they built accessibility into their process from the beginning. Her staff worked with the legislature’s information technology department to make the meetings available online in various formats, which incorporate American Sign Language interpreters and CART captioning services. They also format meeting documents with numbers for anyone who has a hard time following along.
Garlick is the parent of a child with developmental disabilities. And in her career as a registered nurse before working in state politics, she supervised a program for individuals with moderate to severe disabilities. When talking about the commission, Garlick referred to the disability community as a “galaxy with many planets.”
“Individuals with disabilities are very often invisible,” she said, noting that disability groups must sometimes compete for limited state budget resources. “And so they don't get to unite … and it's harder to build the momentum for a movement around individuals with disabilities. I'm hoping this commission will help with that.”
The commission is still getting up and running. Garlick said it was important to spend time establishing value statements to emphasize the “holistic” life experience of people with disabilities. Those statements include “disability is a natural part of the human experience,” “disability can develop at any point during an individual’s lifetime and have varying impacts” and “successful disability policy embraces the ‘nothing about us without us’ principle.”
Moving forward, the commission aims to provide recommendations on legislation for issues such as affordable housing, transportation and workforce development.
Employment is front of mind for Oz Mondejar, the senior vice president of mission and advocacy at Spaulding Rehabilitation Network and Partners HealthCare at Home. He believes efforts on disability inclusion should bridge the public and private sectors.
Rates of unemployment for disabled people were already high in 2019, and people with disabilities were disproportionately affected by the pandemic. The commission's October report cites that as of 2018, just 38.2% of people with a disability in Massachusetts were employed, and are often under-employed.
“Employers can't do it by themselves and the government can't do it by themselves,” Mondejar said of addressing that gap.
"I've seen incredible, innovative work that's come out of hiring folks that think about doing work differently."- Oz Mondejar
When the racial reckoning sparked discussions around equity in employment, hiring and healthcare, “disability wasn't necessarily at the table,” Mondejar said. With the new permanent agency, “this is an opportunity for Massachusetts to once again take the lead” on disability policy.
Mondejar’s involvement builds on his decades of lived experience working in the corporate sector as a person with a physical disability, a limb difference. He says that both employees and employers miss out when people with disabilities face barriers in finding gainful employment.
“I see it as, if you're not open to employment of folks with different abilities, then you're shutting the door on innovation, creativity and really thinking about how do you create a holistic work environment where contributions come from different lenses?” he said. “I've seen incredible, innovative work that's come out of hiring folks that think about doing work differently.”
Mondejar hopes the commission can set an example for employers in the private sector and anyone involved in inclusion efforts by paying attention to intersectionality from the beginning.
“Disability is a big part of every community,” he said. “And if you happen to be a person of color and you happen to have a disability, you have a couple of things against you already.”
Mondejar, Spooner and Thompson all note that the younger, “post-ADA” generation has grown up in a more integrated society which has changed how they approach activism.
“So, the Ozes of the world — they may have been the only one in the classroom, or the only one in the school that had a visible difference — [are] no longer as unique,” Mondejar said. “So it's a different world, an exciting one, and there's a lot of work to still be done.”
A new generation of politicians are also putting inclusivity at the forefront of their policies, including in Boston. In her inauguration speech on Nov. 16, Mayor Michelle Wu noted that the City Council chamber in which she was speaking was not previously accessible.
“Three steps down were a barrier between our government and the people we are here to serve,” she said, explaining that the room was modified to be fully accessible. “When we make City Hall more accessible, we are all raised up.”
Spooner watched the speech hopefully. “It's very uncommon,” he said about accessibility being front and center as a mayor takes office. “It was overwhelmingly really awesome to hear. She really epitomized a very progressive, inclusive campaign. We all know Boston needs that more than anything else.”