Aug. 6—STATEN ISLAND — It's the Year of Willowbrook at the College of Staten Island, a 204-acre campus surrounded by a park-like landscape located on the former site of Willowbrook State School. Commemorative events began in January.
The year of public programming to commemorate several significant Willowbrook anniversaries will be highlighted in September by the groundbreaking of the Willowbrook Mile, an interpretive walking trail on the Willowbrook campus.
On Sept. 20, Three Mile Bay author Ellen Marie Wiseman is schedule to appear at the college with Dr. William G. Bronston and David Goode. Dr. Bronston and Mr. Goode, along with Darryl B. Hall and Jean Reiss, wrote the 2013 book, "A History and Sociology of the Willowbrook State School." Mrs. Wiseman's latest novel, "The Lost Girls of Willowbrook," dramatically evokes the institution.
At 6 p.m. Sept. 17, Mrs. Wiseman and Dr. Bronston, a former Willowbrook physician who released a book last year on his contentious three years there, are scheduled to give a talk at Barnes & Noble, 2655 Richmond Avenue on Staten Island.
At the college, Year of Willowbrook events so far have largely been online and virtual. They have addressed the evolution of the Willowbrook State School from model institution to disgrace, the advocacy that led to its closure, the advancements made in ensuring the rights of people with intellectual and developmental disabilities and the ongoing crusade for education and memorialization surrounding those affected by Willowbrook and by other institutions like it.
"It's been amazing in terms of how many people have participated," Catherine J. Lavender, a member of the working group overseeing the Year of Willowbrook, said in a phone interview. Ms. Lavender is also director of the Women's, Gender & Sexuality Studies Program at the College of Staten Island and director of the Bertha Harris Women's Center at the college.
The most popular event for the year's commemorations so far was in February when a program reflected on the 50th anniversary of the original broadcast of "Willowbrook: The Last Great Disgrace," the ABC television expose by Geraldo Rivera first broadcast in 1972.
Before that expose, in 1965, Sen. Robert F. Kennedy, D-N.Y., paid an unannounced visit to Willowbrook and denounced its condition as bordering on a "snake pit."
According to the New York nonprofit Center for Disability Rights, "These reports led to a class action lawsuit being filed against the State of New York in Federal Court on March 17, 1972. A settlement was reached on May 5, 1972, mandating reforms at the site, but several more years lapsed before violations were finally corrected."
As Willowbrook was being shut down, a process completed in 1987, the reverberations were widely felt, including in Northern New York.
"As an organization that was formed in 1954 and was a huge part of deinstitutionalization in the 1970s and '80s, we were involved in placing people who used to reside at Willowbrook," said Howard W. Ganter, CEO of The Arc Jefferson-St. Lawrence. "Both Jefferson County and St. Lawrence County were involved in placing people back into communities from Sunmount and other institutions to include Willowbrook and we still support several Willowbrook-class individuals in Jefferson, but more in St. Lawrence County in both our residential and day services programs."
'It feels so current'
Geraldo Rivera remotely joined the February Willowbrook event, in which participation exceeded the 1,000 Zoom license limit of participants.
"It has been decades since I've watched it," Mr. Rivera told the attendees, according to a college news release. "It's fascinating to think how it's half a century ago, yet it feels so current. It feels so immediate. The dangers of negligence are so vivid. But the humanity is the same. The solution is the same. What developmentally disabled people need is the same thing able-bodied people need. They need to have their human potential realized. They have to be able to be in a situation where they can be as much as they can possibly be."
It's not just the Rivera event that has gained attention at "Year of Willowbrook" programming.
"It's been 300 to 400 people for almost every event, which is astounding in terms of being in contact with people," Ms. Lavender said. She has a theory as to why the programs have been so popular.
"People are making a connection between contemporary news — that this history might actually help inform strategies that they can use now," she said.
For example, she noted the high death rate in institutions during the COVID-19 pandemic related to the intellectual/developmental disabilities community.
"There is a rise in consciousness about the danger of that," Ms. Lavender said. "There's an upswing of activism also. There have been budget cuts, especially in New York that affected people, and the waiting list to get into group homes has grown incredibly long. But even with a long waiting list, they've been closing some group homes because they simply can't fund them. So, that is kind of a perfect storm for interest. People are becoming much more aware that they actually have to engage in a political struggle to ensure decent treatment and services are available."
Ms. Lavender said there's also an understanding of how people were successful in fighting for such justice in the past.
"Willowbrook is a great poster child of how they did it," she said. "People are looking back at that in order to learn about what they can do now."
Disability rights, she said, can be seen as part of a larger civil rights fight.
"Understanding the history of social change is something a lot of people are more interested in right now than maybe they had been 10 years ago," Ms. Lavender said. "So, it's bringing all these groups together."
family pain, disconnection
The gathering of people related to the Year of Willowbrook has been emotional at times for organizers, Ms. Lavender said.
"One of the things that's come out through this process of gathering these people together and having them talk about Willowbrook, is that many siblings of people who have been at Willowbrook have told us about the pain they still carry about feeling disconnected to that family member," Ms. Lavender said. "Their parents have now passed away, and their parents' papers come to them and they learn for the first time that they had an older sibling sent to Willowbrook and then sort of disappeared into the system that they never even knew about."
Some people have been able to track down a relative, only to find they have died.
"In a real common story, even if they knew the existence of the sibling, and the sibling was gone, they have tremendous pain associated with that," Ms. Lavender said. "Partly because it traumatized their family. The parents were told to never talk about it so they never really processed it as a family. Sometimes the parents simply erased that child who was sent to Willowbrook."
The Year of Willowbrook is a way of healing that feeling of guilt.
"It occurred to us that this was an opportunity to invite people back to the site and to have a commemoration and memorial for individual people," Ms. Lavender said. "Nobody has had the moment to commemorate their deaths or to give thanks for their presence because they were just erased."
"Embracing the Willowbrook legacy and addressing the needs of persons with disabilities runs through the fabric of the College of Staten Island's culture," according to CSI Today, a college publication.
On Sept. 17, the 35th anniversary of the closing of Willowbrook, a memorial walking trail — Willowbrook Mile — will be dedicated. It consists of 10 reflection stations that mark the history of the site with benches and landscaping. Ground was broken for the project in 2014. It's been funded by Assemblyman Michael J. Cusick, D-Staten Island, and the College of Staten Island, with support from the CSI Foundation and community donors.
cost of proper care
Ms. Lavender, who served as coordinator of the master's history program at CSI from 2002 to 2009, was asked if something like Willowbrook could happen again.
"Absolutely, because we still talk about it as an economic decision," she said. "If you read the history of how large institutions came to be, it was a matter of trying to provide what they believed would be good, scientific care to a larger number of people for a cost-effective price. It was extremely expensive to do it correctly."
"Interaction" adds to cost, but is essential, she said.
"People need interactions, especially young people, in order to develop," Ms. Lavender said. "Even people with intellectual and developmental disabilities develop. They develop their intellect and they develop in general. But if they're not interacted with, and if you don't have the staffing that's required to, for instance, to do physical therapy so their joints don't freeze in place, you end up with what happened at Willowbrook."
Such neglect led to the use of "cripple carts" at Willowbrook. They were used for residents who had physical disabilities, like spina bifida, and who could not use wheelchairs. At Willowbrook, the carts were adapted to make it easier for a single staff member to move many residents around at once.
"They would lie in these hard, wooden carts for the entire day," Ms. Lavender said. "They're crammed in there. There's no personal space. In addition, they get frozen in place because they're not receiving physical therapy. There's astounding images of children with their legs locked, sticking up in the air for the entire day because they can't put their legs down. Their legs are frozen."
She added, "That's what happened in institutions. So, it never did live up to the scientific description of what an institution would need to do and could do. But that's sort of inevitable because it's an economic model of, 'How do you provide a lot of care for little money?' Inevitably, it's expensive and state legislatures, charged with funding this and who aren't seeing it with their own eyes, can easily be convinced that, 'Oh — it's run by doctors. They know what they're doing.' So they keep cutting the funding more and more, you end up with people who are not trained as aides because that's all you can afford and abuses happen and bad things are outcomes."