TURNERS FALLS — Seventy-five years ago, a Franklin County mother wrote a letter to the Greenfield Recorder calling for fellow parents of children with disabilities to come together and support one another.
Rita Marguerite Canedy had two children with disabilities and was searching for a better future for them at a time when families were often given few options beyond institutionalization. Her 1951 letter helped bring together other parents and led to the formation of what would become The United Arc, which was incorporated in 1960.
Today, the organization continues that legacy of advocacy while providing a much broader range of services to people with intellectual and developmental disabilities, and their families in Franklin, Hampshire, Hampden, Worcester and Berkshire counties.
For United Arc CEO Fred Warren, the nonprofit’s 75th anniversary this year provides an opportunity to reflect on and recognize the families who challenged the way people with disabilities were treated back in the 1950s.
“It’s just affirmation of just the significance of the work and the foresight that those families who originally came together to form what became The United Arc had 75 years ago,” Warren shared.
When the organization began, many families kept children with disabilities isolated out of shame, embarrassment or fear of how their communities would respond. Warren said some parents were encouraged by doctors or clergy to institutionalize their children, sometimes signing away parental rights in the process.
Canedy and the other early families pushed against that system, seeking opportunities for their children to have friendships, participate in their communities and enjoy the same basic childhood experiences as anyone else.
That original mission has remained at the heart of The United Arc, but the way the organization fulfills it has changed considerably.
“The services that we’re providing have changed so much throughout the years based on what people are needing,” Development and Events Manager Stevie Cormier said. “It’s been interesting to reflect on that.”
The organization initially focused on children, but as those children grew older, The United Arc recognized that support could not end when they reached adulthood. During the 1970s and 1980s, the organization broadened its focus to people with intellectual and developmental disabilities across their lives, while state and federal governments also became more involved in funding services and programs.
That evolution eventually brought greater attention not only to providing services for people with disabilities, but also to making sure they have a voice in determining what those services and their lives should look like.
One example is The United Arc’s Self-Advocacy program, which teaches adults with intellectual and developmental disabilities about their rights and how to advocate for themselves in situations ranging from medical appointments and workplaces to everyday conflicts. Cormier said the organization holds two meetings each week as part of its self-advocacy programming.
April Jones, the Self-Advocacy program’s leader, joined The United Arc in 2017, by which time the service was already in place. Today, self-advocacy represents one piece of The United Arc’s larger emphasis on independence and choice.
Jones shared that people with intellectual and developmental disabilities have historically had decisions made for them because others assumed they could not make their own choices or have meaningful opinions.
The goal, she said, is to help people understand that they have the right to speak up in whatever way they communicate.
Cormier noted that while The United Arc has remained a person-centered organization, the voices of the people it serves now play a much larger role in determining the services they receive.
The organization today offers a wide spectrum of services. Those include residential support, independent living assistance, respite services and programs connected to the Department of Children and Families, as well as self-advocacy and other community-based programs. Warren explained that The United Arc is typically involved with about 1,000 individuals and families each year.
The organization also recently experienced a significant return to its earlier work by regaining the contract for its Residential Program, which offers 24-hour assisted living for individuals with intellectual or developmental disabilities, and provides help in daily activities. Families are able to have their children live at a Hastings Street home in Greenfield with the support of The United Arc staff.
“There a currently five individuals that live in that home,” Cormier said. “They receive 24-hour care and we help with financials, meals, health, wellness, everything.”
As The United Arc celebrates its 75th anniversary, the organization is looking at both where it came from and where it’s going.
Cormier compared the anniversary to reaching the first mile of a longer race: The United Arc has learned from its first 75 years, but there are still many more miles ahead.
“The next 75 are about using what we already know to help more people,” Cormier shared, “and get more people involved in their rights, their voice, and what they would like for their life and letting them make the choice.”
For Jones, that future remains connected to the same basic idea that motivated Canedy and the families who joined her in 1951.
She believes the organization’s founders would be proud to see people with disabilities being encouraged not to simply receive support, but to take control of their own lives and make independent choices whenever possible.
“And in any situation where you feel like your rights are not being heard or respected, you get to speak up,” Jones said. “If you have trouble speaking up, find someone who can help you. And when I say speak up, however you communicate, it doesn’t have to be out loud.”
