When Peter Cronis was 5 years old, he was sent to live in a state institution.
Cronis has arthrogryposis — which limits his body movements — and a severe form of scoliosis. He uses a wheelchair to get around. Growing up in Roxbury in the 1950s, there were few options for people with disabilities to live at home.
He was far from his family and isolated.
“I hated it,” he told GBH News recently. “I wanted to go home with my brothers … it was more fun at home with them than being cared for by nurses and strangers.”
In the 1970s, while he was a student at UMass Boston, he heard about the newly formed Boston Center for Independent Living, and it changed his life. They helped him find an apartment in Brookline, and helped him get set up with personal care attendants for daily needs like transferring out of bed, bathing and getting dressed. For the first time, he was doing something he was never sure he’d be able to do: living on his own, outside of an institution.
“I equate BCIL with freedom,” Cronis said. “Thanks to BCIL, I’m a free man.”
On Sept. 21, the Boston Center for Independent Living will celebrate its 50th anniversary with an event at the Reggie Lewis Track and Athletic Center in Roxbury. Founded by disabled people as the second independent living center in the country, it was born out of a disability rights movement that was inspired by the civil rights movement.
There are now 10 independent living centers across the state and about 500 across the country, many of which have a staff that is made up of a majority of disabled people.
BCIL was created with the launch of the personal care attendant program in Massachusetts, a Medicaid-funded program that provides workers who assist people with disabilities to live at home, which many people credit with helping them avoid living in a nursing facility. PCAs help with daily activities like getting dressed, using the bathroom, preparing food and taking medication.
“I equate BCIL with freedom. Thanks to BCIL, I’m a free man.”Peter Cronis
In addition to the PCA program, BCIL helps people transition out of nursing homes; helps people apply for housing assistance; and connects people to assistive technology and accessible transportation. The center also advocates and lobbies state leaders on issues like transportation, housing and employment.
“This has been a grassroots organization providing services, advocating and [has] been very much out front on disability issues in the city and the state in the country over 50 years,” executive director Bill Henning said.
‘We have rights too’
In the late 1960s, Charlie Carr was injured in a diving accident. He was 15, and people with spinal cord injuries like his didn’t have many options.
“There were no independent living centers. There was nothing there for me,” he said. He got stuck in institutions, an experience he equates with living in a prison. He didn’t want to spend the rest of his life there.
“Remember, we’re in the midst of the anti-war movement, the women’s rights movement, the civil rights movement,” Carr said. “And we said, ‘we [disabled people] have rights, too. We’re an oppressed minority. And so now we’re gonna fight like hell to get out of here.’ And that’s what we did.”
Inspired by the founding of the country’s first independent living center in 1972 in Berkeley, California, Carr and a few other local activists asked the state to set up a PCA program, modeled after the Berkeley program. The state refused, saying it would cost too much money.
So Carr and the group set up in the lobby of the Department of Welfare building in downtown Boston and refused to leave. Eventually, the protesters were invited in to negotiate.
“They [state leaders] basically were caught between a rock and a hard place because we weren’t going to leave, and we were adamant that we wanted to live in the community,” Carr said.
The state launched a PCA program and BCIL became the organization that facilitated it. In 1975, at age 22, Carr moved to a brand new apartment in Medford with help from several PCAs. He can still remember the “new apartment smell” and the taste of independence.
“I looked at it and I drove around and I said, ‘I’m never going back,’” he said. Carr eventually graduated from college, bought a house with his wife and founded the Northeast Independent Living Program in Lawrence. He’s now the legislative liaison at the Boston-based Disability Policy Consortium.
The PCA program has grown. Originally serving about 150 people, more than 40,000 people across Massachusetts are currently in the PCA program. Over the years, BCIL has fought proposed cuts and advocated for higher worker wages.
Cronis, who is now 68 and works at BCIL as senior PCA skills trainer, says the program empowers the disabled person. As opposed to other home health care services, the PCA program is “consumer-directed,” meaning the person being served hires and fires the PCA, and trains them for their unique needs for daily living.
Pushing the MBTA
Michael Muehe, longtime disability advocate who has worked on transportation issues, arrived at Boston University as a student in the late 1970s, and he remembers going up and down Commonwealth Avenue in his wheelchair.
“Anytime it started to rain or snow, a lot of my non-disabled classmates would just hop on the Green Line,” he said. “And that wasn’t an option for me, because at the time, the Green Line was completely inaccessible to wheelchair users and other people who couldn’t climb steps.”
That changed over time, including with the passage of the 1990 Americans with Disabilities Act. A class action lawsuit BCIL filed against the MBTA drove further accessibility improvements in 2006, including the creation of a department within the MBTA that is responsible for system-wide accessibility.
Dianna Hu, 30, who has spinal muscular atrophy and uses a wheelchair, says those transportation improvements were a revelation for her when she first arrived in Boston as a college student from New York’s Long Island.
“When I came to Boston and I hopped on the T for the first time, that was a real magical moment for me because, wow, here I am,” she said. “I can push the elevator button and I can get from station to station all across the city, pretty much all on my own. So that was a real eye opener.”
Looking ahead
Many disabled people told GBH News that having the right to live on their own in the community was once viewed as a radical concept. Although that has slowly changed thanks to independent living centers like BCIL, there is still a lot of work to be done, they say.
Moving forward, BCIL affiliates told GBH News they hope to focus on supporting the PCA program, which is facing a worker shortage crisis, and issues like accessible affordable housing, accessible technology, health care and discrimination in employment.
They also hope to do more to support disabled people in communities of color, Henning, the executive director, said. According to the CDC, people who are American Indian/Alaska Native or Black are more likely to have a disability than their white counterparts. BCIL opened an office in Fields Corner, Dorchester in 2022, with hopes to continue offering its services to communities who need them.
“One of the unheralded milestones is just providing services to people every day. You know, there’s not many flashing neon lights to help somebody find housing, get on benefits, enter job training programs, things like that,” he said. “That’s the grunt work day to day. And that’s the majority of what we do.”
