Board
Member Dianna Hu joined with Senator Ed Markey and members of the
medical community at a press conference to oppose possible repeal of the
Affordable Care Act in June 2017.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.’”