In the disability community, we often exist without any understanding of our elders. Because of the harms of nursing homes, eugenics, and everyday ableism (among other problems) that history can feel lost. So, when you’re starting a series like this – with the goal of speaking to independent living centers across the country – you have to speak to people who have been doing this work for a very long time.
Decades of service
Paul Spooner is one of those people. He’s the executive director of MetroWest Center for Independent Living in Framingham, Mass, one of the ten independent living centers in the state. He’s worked there for three-plus decades, on what he calls a “very, very long journey.”
“Those were the days when the fight was on to get the Rehab Act of 1973 fully authorized and the regulations promulgated. So those were really some of the early days of the disability and independent living movement, I helped create an independent living center in 1980 called Independence Associates, which is located in southeastern Massachusetts. And, you know, since then I've filled every job category from being a volunteer board member, staff person, and currently, I've been the executive director for almost 30 years now.”
Spooner estimates that independent living centers in Massachusetts support 40,000 to 50,000 people annually and calls one of his center’s “individual flavors” – what his center focuses on – their emphasis on enforcing access legislation. He says that focus is something that isn’t always supported by the systems currently in play.
“Since I've been here, we've really focused on our obligation to try to enforce accessibility laws, particularly around access, because that's the biggest bang for the buck. But, you know, most funding sources are much more interested in individual one-to-one services. There's not as much enthusiasm for community advocacy work as that should be.”
The IL voice
Spooner was once heavily involved with a transitional living program at the Boston Center for Independent Living. According to that center’s director, Bill Henning, community activism work is also a key tenant of their activities.
“We're not afraid to protest a lot. That stuff's been muffled because of the pandemic, you know, you can have a call-in but a Zoom protest just doesn't cut it . . . There are ways to show your power, a lot of it's still about power. How do we get power to have our issues advanced, you know? That's what ILCs in their best manifestation can do because it has a consumer voice.”
Henning, who has worked with organizations like ADAPT since he began working in disability rights in the mid-eighties, points to a “severe shortage of affordable housing” as one of the largest issues facing disabled people in the state.
“It's really a challenge to just do housing search for everybody. So we hold workshops to (in Mass) explain the subsidized housing market, how to seek accommodations, things like that.”
Henning said that, like many older cities, the issue isn’t just that there is a shortage of fully-wheelchair accessible housing, it’s that those with many types of disabilities are living in buildings that require stairs, like two-story walk-ups. He says that it’s not unheard of to hear from residents who are practically trapped in their apartment, or are very limited because going out just isn’t worth the energy expenditure that getting to the ground level requires.
Massachusetts role in the Independent Living movement
In terms of how MetroWest balances the essential services of an independent living center with the history of the movement, Spooner says that Massachusetts is in a “strange situation.”
“And I mean, strange in that Massachusetts was an early leader in having state laws that required accessibility regulations in the building codes for access, public access, in housing, public places, and so forth. But it excluded employee only-areas. And, you know, obviously, with the passage of the Americans with Disabilities Act, on a federal level that changed in 1990. And thus far, in Massachusetts, we have not been able to overcome the legislative hurdle to get our access regs updated to include employee-only areas. So, we kind of were a leader and then we fell back.”
Despite those barriers, Spooner estimates that his organization files approximately 30-50 complaints a year to the state’s access board, and says that around 4 in 5 come to a positive resolution.
“It's a very unique model for access compliance. We’ve gotten a lot done.”
Advice for new residents
When asked what disabled people moving to Massachusetts should be thinking about in terms of independent living, Henning said that the key is to do as much planning as you can before you arrive. One of the limitations he says his center faces is that they have a lengthy list of people who are awaiting support and many of the eligibility requirements that need to be met in order to be successful require you to already be living in the state.
“We might triage you to the back of the list not because we don't want to help you but because we’ve got folks in the neighborhoods and the surrounding communities who might be in the streets, might be in a nursing home. More, likely, are living in really less than perfect independent living situations, maybe in a home with access barriers, maybe couch surfing – going from family couch or friend's couch to another couch -- you know. may have a porta-potty in the living room. things like that.”
In terms of what’s next, Spooner says that there really are two key issues facing the movement in Massachusetts despite what he calls a “significant amount of support” from the state and federal levels: infrastructure – like housing and transport – as well as attitudes and a broadening of scope.
“I’d say that independent living has really entered into a new arena. When I first started it was primarily people with very obvious physical disabilities and today, we're dealing with a much broader range of disability that includes people with developmental disabilities, intellectual disabilities, individuals on the autism spectrum, and mental health issues and we need to adapt our philosophy, our practices, to ensure full inclusion of everybody and independent living model of consumer control, consumer choice.”
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