When the Boston Center for Independent Living formed in 1974, it was the second organization of its kind nationwide to focus on helping people with disabilities live outside of facilities and nursing homes. This month, BCIL celebrated its 50th year of work.
The milestone is a chance to reflect on where they’ve come from as well as where they’re hoping to go next, said Bill Henning, the group’s executive director.
“We’re trying to look back at some of what’s gone before us and trying to give us a kickstart for the next 50 years,” he said.
On Saturday, the organization hosted a 50th anniversary event, held at the Reggie Lewis Track and Athletic Center in Roxbury, to celebrate the milestone and also mark the issues they’re advocating and pursuing.
“We’re not joyless here. It’s hard work, but you got to celebrate the victories and looking forward,” Henning said.
The group’s legacy so far isn’t small, said Paul Lanzikos, co-founder of Dignity Alliance Massachusetts, a coalition of organizations, including BCIL, that works on advocacy around care for the state’s elderly residents and residents with disabilities.
“I think it’s one of the most preeminent and progressive [organizations of its kind],” Lanzikos said. “It’s been at the forefront of advancing the interests and rights of people with all sorts of disabilities of all ages in terms of public policy and service delivery.”
He pointed to BCIL’s work around supporting people dependent on personal care attendant services — efforts that go back decades to when BCIL formed and launched the state’s first personal care attendant program in 1974. At the time, it was the second independent living center in the country; now, the National Council on Independent Living recognizes hundreds of them.
The personal care attendants efforts help individuals with disabilities who need help with daily living to be able to stay out of a nursing home and in their communities.
Pride and dignity
Henning also pointed to the group’s work helping to organize the first Disability Pride Day in October 1990, months after the passage of the American Disabilities Act, an event that tried to bring the sense that it’s OK to be disabled.
“And it is, of course. It’s natural,” Henning said. “You shouldn’t be hidden. Don’t put people with disabilities in institutions out of sight, out of mind.”
Lanzikos said such advocacy work along with the services the group regularly provides to more than 4,000 recipients annually shapes BCIL’s legacy as a “stellar” organization.
“They have literally opened doors, cleared barriers, and made the lives and the future of thousands of people much brighter and more independent so they can all live in ways that they choose with the dignity that is owed to each and every one of us,” he said.
A spark of anger
The history of separating people with disabilities in facilities to keep them out of the way was what generated a “spark of anger” that Henning said led to the group being formed in the first place.
“People were being put in institutions, hidden from the community, not able to get jobs or raise families because of the ‘crime of being disabled,’ is what we say,” Henning said.
That same sense of anger can give a sense of where the group is going next.
“Look at that anger, what propelled it,” Henning said. “What makes people angry today? Not having good housing, still not getting full access to health care. You build a little bit on the anger, but you [also] build on the creativity, the genius.”
Seeking equitable access
Henning said some of organization’s priorities now are ensuring residents with disabilities in the state have equitable access to health care, to education, to housing.
He said that even now, some health care facilities don’t have physically accessible scales, or if they do, patients might have to ask for them. Access can be further limited if staff don’t know or recall that they exist. That can lead to complications with care, as weight can be a key sign of wellness or an important factor for dosing medications.
“These are critical social determinants of health and well-being,” Henning said. “And as we look at the Boston community, some of the biggest challenges are in housing, health care [and] where is Boston Public Schools going? We have to look at that as well through a framework of people with disabilities. I think that’s really critical.”
The group hasn’t left behind efforts to get people with disabilities who are unnecessarily institutionalized out of nursing homes and care facilities. Following a June settlement in the case Marsters vs. Healey — a class action lawsuit brought on behalf of tens of thousands of individuals with disabilities who are institutionalized — BCIL has been actively involved in getting thousands of people back into the community to live in new homes with appropriate services.
Lanzikos said that the organization is “playing a leadership role” in making that happen.
Focusing on broad impact
As BCIL pursues today’s work, Henning said it’s important that its advocacy not be considered a separate effort, as many of the issues they’re working around impact other groups as well.
“We look at it from the disability perspective, but these issues may be looked at as elder issues, low-income issues, issues impacting communities of color,” he said. “All of that’s appropriate, but it also includes people with disabilities, and I think we would look forward to trying to just shed more light on that, and not see disability services siloed.”
For example, an aging housing stock means limited options for the people with disabilities for whom the BCIL advocates, but also has broader impacts. Options like Boston’s typical triple-decker can present barriers for residents in wheelchair or on a scooter, but also for residents who have asthma or COPD or are just older.
“If you got folks living in three-deckers, they can be fixed up, they can be pretty nice — some of them are older, maybe not as nice — but not everybody can walk up three flights of stairs,” Henning said.
His organization’s advocacy is also increasingly intersectional. Many of the personal care attendants the group works with are people of color. According to data from the Census Bureau, in 2022, about 20% of PCAs in the United States were Hispanic. Staff of color made up more than 50% of the workforce.
It’s a topic BCIL advocates on, but also one it tries to reflect in its own staff. Henning said that it’s a goal of the organization to have its workforce be reflective of the community.
“We don’t just talk it,” Henning said. “We’re not just on a soapbox in Harvard Square saying, ‘Oh, this should be intersectional. We should all hold hands and sing Kumbaya.’”
