If she can avoid it, Robin Ripple does not go to the state-operated Western New York Developmental Disabilities Services offices in West Seneca.
Beyond all else, she faces a logistical challenge. Ripple, of North Tonawanda, uses a wheelchair. Getting out there demands either finding a ride, or taking a bus that requires two transfers and then shuttling in, which is frustrating enough.
Yet her objections to the journey come from a deeper place.
Ripple, 53, was born in Buffalo with cerebral palsy, a developmental disability. As a 3-year-old, in the late 1960s, she was placed by her family in the old West Seneca State School, later renamed the West Seneca Developmental Center, part of a complex that is now used in part for state offices.
The scent of the building remains haunting and familiar, Ripple said, a throwback to what she recalls from those years. Simply going in the door creates a visceral response. The state offices conjure up memories of too many cold showers or meals of institutional puree. They cause her to remember a childhood spent sleeping in a dormitory with many other girls in a facility that at its peak held 1,700 residents.
Those men, women and children were cut off from the larger regional community. In essence, Ripple said, she and her companions were locked away.
"I still dream of it," said Ripple, who wakes up even now to a feeling of relief that she is out.
Thursday, on the 28th anniversary of the signing of the Americans with Disabilities Act, she hopes to join many others at 10 a.m. at Southgate Plaza for a "walk and roll," a gathering that will proceed by foot or wheelchair toward the state offices in West Seneca. Many people who live with developmental disabilities, joined by advocates for their cause, will renew their call for a change in direction from the state Office for People with Developmental Disabilities.
They want those offices moved to a central location on a major bus line, preferably near downtown Buffalo.
"I don't even want to see that place," Ripple said, of the buildings in West Seneca.
The old developmental center opened as a residential "state school" in 1962. While thousands of men and women born with developmental disabilities were still confined in similar institutions around the state and nation, the national conscience was finally beginning to shift.
More and more parents were deciding to raise children born with disabilities in their own homes, rather than listening to doctors or other advisers who suggested "sending them away," into an institution. By the early 1970s, the revelation of harsh and dehumanizing conditions at the Willowbrook State School galvanized a national movement. Those born with developmental disabilities – joined by many advocates – pushed hard for the right to attend public schools, hold traditional jobs and regain their place in the larger community.
The last residents left the West Seneca complex, about 12 miles from downtown Buffalo, in 2012. Even so, the state kept its administrative offices and some clinical services there, including a staff that numbers in the hundreds.
"We want them to get out," said Marie Malinowski, who was born with developmental disabilities and is now co-chairwoman of the VOICE Buffalo Accessibility Task Force, which is coordinating the walk and roll. "We want to get out of that institutional mindset."
In an email, Jennifer O'Sullivan, a spokeswoman for the state Office for People with Developmental Disabilities, said the state is taking steps to respond.
"OPWDD has heard the concerns of advocates and is working on both short-term and long-term plans to help alleviate those concerns," O'Sullivan wrote. The state agency, she wrote, has "committed to increasing shuttle service by adding midday runs," and is also "working toward a satellite office in a shared space in Buffalo."
The West Seneca campus, she wrote "is still used for administrative purposes with approximately 300 staff employed in various roles," and also has a clinic that provides services for people with disabilities living in community-based residential settings.
In a news release last week, Malinowski and task force co-chairman Mike Rogers said those state plans offer "bandaid solutions."
Sophia Roberts, western region coordinator of the Self-Advocacy Association of New York State, and Andrew Marcum, program coordinator at the Center for Self-Advocacy in Buffalo, both said the essential question cannot be separated from the origins of the developmental center.
Marcum, during a post-doctoral research fellowship at the University at Buffalo, interviewed a few men and women who had lived in that center, as well as many people involved with self-advocacy. The entire idea behind the West Seneca location was isolation, he said, the notion of "removing men and women who were seen as threats" because their disabilities set them outside the mainstream population.
"What message does it send to people with disabilities if the place where they are supposed to receive services can be almost impossible for them to reach?" asked Marcum, who was born with cerebral palsy.
Roberts makes the same point. She said state officials have been open to meetings and conversation, and have tried to address some problems. For too long, Roberts said, a person who could access West Seneca only via bus and shuttle could finish a meeting, then be stuck there for hours without a way of getting back to Southgate Plaza on Union Road.
The addition of new shuttles has been a relief, Roberts said, but does not resolve the central issue: West Seneca is still a remote, time-consuming destination for someone with a disability who uses public transportation. Roberts suspects the real problem with moving those offices is financial. The state would be forced to abandon a complex it already owns while finding new space in a more expensive location.
"But where they are," she said, "just doesn't make sense."
The subtle power of any workplace, Roberts said, lies in the idea of casual socialization, the idea that a quick and unexpected conversation in a hallway or while pouring a cup of coffee can be as important and creative as a formal meeting or service session.
State service providers inherited a location built upon concepts of segregation and isolation, Roberts said. And the ongoing truth, she said, is that the state offices –as they exist – are a contradiction in terms.
How can offices intended to serve people with developmental disabilities rise to their highest purpose, Roberts asked, unless they are easily and comfortably available to the men and women they are meant to help?
Rogers, the other co-chairman of the task force, has a story that he said illustrates the point. Born in 1975 with cerebral palsy, he attended local schools in Cheektowaga and graduated from Canisius College. He never lived in the developmental center, and he used to meet with his state service providers at his home, not in West Seneca.
Even so, his life changed 12 years ago, when he began working at the West Seneca site through his role as a staff member for the Self-Advocacy Association of New York State. Until that point, Rogers said, he was still living with his parents, because he believed it was financially impossible to afford his own place until he found a way to save more money.
At the state OPWDD offices, he casually encountered men and women who knew the system inside out. Coincidental meetings in the hall or near his desk led to friendly introductions and conversations about life, and several people told Rogers:
You don't have to wait. There are ways to find enough funding to live on your own right now.
He embraced those suggestions. He ended up moving into his own apartment. The everyday contact with peers and service professionals opened up opportunities he had not realized were available.
Such spontaneous conversations, he said, should be possible for everyone. Rogers spoke with passion of Thursday's anniversary, which recalls the moment when President George H.W. Bush signed into law the Americans with Disabilities Act. It guaranteed people with disabilities should have the same access and opportunities as anyone else. Within his community, Rogers said, it is still seen as a kind of independence day.
"We've been around," said Rogers, who remembers an America in which curb cuts and ramp access for wheelchairs were luxuries, rather than rights as they are today. "We know that if we don't keep speaking up, a lot of this stuff can get dialed back."
Certainly, Rogers understands why Ripple and others who endured life in institutions have such reluctance to visit a place where they once lived behind locked doors. If that is not enough reason unto itself to reconsider the West Seneca location, Rogers said state offices for people with developmental disabilities should be a hub of energy and thought, a place of full and creative integration.
He will demonstrate just how much that means on Thursday, in the cause that brings together so many who "walk and roll."
Sean Kirst is a columnist with The Buffalo News. Email him at email@example.com or read more of his work in this archive.