Located on Staten Island in New York from 1947-1987, Willowbrook State School was a state-run institution for children with intellectual abilities that became known – tragically long before it was finally shut down – for its deplorable conditions, overcrowding, neglect, physical and sexual abuses, and unethical practices. An estimated 12,000 residents died at Willowbrook from 1950-1980 due to neglect, violence, lack of nutrition, and medical mismanagement or experimentation. What was your awareness of Willowbrook State School before reading The Lost Girls of Willowbrook? Why do you think most people today are unfamiliar with the history of Willowbrook?
Willowbrook was grossly overcrowded, underfunded, and understaffed, with one or two attendants per up to 125 residents, and over 200 residents living in houses built for less than 100. While this novel negatively depicts most of the staff members, there were in reality many good, well-meaning people who worked at Willowbrook. There were also wonderful doctors who truly cared for the residents, such as Dr. Mike Wilkins and Dr. William Bronston, who risked their careers and more to improve conditions and bring justice to victims. Do you think the staff and doctors at Willowbrook were just as much victims of the institution as the residents? Why or why not? What do you think were the biggest factors that contributed to the horrible conditions and abuses at Willowbrook?
When Sage discovers her twin sister Rosemary has gone missing from Willowbrook, she takes a bus to the institution to help with the search. She goes alone because her stepfather is cold and indifferent, and she feels like her friends are unreliable. Do you think Sage’s lack of knowledge about the “school” influenced her decision to go there by herself? What would you have done in that situation? Would you have headed to Willowbrook alone?
How would you react if, after grieving a loved one for years, you found out they were alive but had been committed to an institution like WIllowbrook?
Willowbrook State School first gained infamy after an unannounced visit in 1965 from Senator Robert Kennedy. Despite his vivid descriptions of it as “a snake pit” and his horror over the conditions of the children “living in filth and dirt,” the school continued to operate for another 22 years. In 1972, Geraldo Rivera filmed the Peabody Award-winning expose “Willowbrook: The Last Great Disgrace,” which aired on national television. This documentary brought widespread mainstream awareness of the institution’s abuses, overcrowding, deplorable conditions, and physical and sexual abuse of residents. Shockingly, it wouldn’t be shut down for another 15 years. Were you surprised that WIllowbrook was allowed to continue operating for so long? Why do you think it took decades to shut down the institution?
Sage remembers hearing rumors about scientific experiments being carried out on children at Willowbrook. This rumor turned out to be true. Some of the top virologists in the U.S. used the school as experimental hideout for developing vaccines for hepatitis, measles, mumps, shigellosis, and other diseases, and it was funded by the Defense Department. Other experiments involved hormone treatment, dwarfism, and electro-stimulation, among many others. In 1976, one Willowbrook administrator was quoted as saying he once counted seventy-three separate research projects going on at one time. More recently, vaccinologist Maurice Hilleman has described the hepatitis studies performed at the institution as “the most unethical medical experiments ever performed on children in the United States.” Did this surprise you? Have you ever heard of any other medical experiments being carried out in the U.S. on the disenfranchised, impoverished, orphaned, or ill?
When Sage arrives at Willowbrook, the doctors and nurses think she is her missing sister. She tries everything to convince them that she is Rosemary’s identical twin but nothing works. Is there anything else she could have tried?
Willowbrook State School is mentioned in the 2009 documentary “Cropsey” as reportedly having housed convicted child kidnapper Andre Rand, who had previously worked there as an attendant. One of Rand’s supposed victims, Jennifer Schweiger, was found buried in a shallow grave behind the grounds of the abandoned institution. Have you ever heard of the legend of Cropsey? Do you know of any urban legends centered in or around the area where you live?
Sage’s stepfather says one of the reasons he and her late mother lied about Rosemary being committed to Willowbrook was because her mother wouldn’t have been able to show her face in public without people whispering behind her back. At the time, ignorance of mental disabilities meant there was still extreme stigma and fear surrounding it. Since then, there have been some changes in the attitudes and treatment of those with disabilities, although we still have a ways to go. Why do you think that is? When did the change begin? What else needs to be done?
Eddie learns that one of the doctors who was fired for trying to improve things at Willowbrook gave a key to a reporter named Geraldo Rivera, who brought a film crew into House Six to expose the inhumane conditions. How did you think Eddie learned that information?
At one point, Sage learns there are kids without disabilities in Willowbrook who were abandoned by parents and foster homes. Some were left in public places with signs that said, “Take Me to Willowbrook.” In real interviews, Willowbrook staff have stated that some well-to-do families got their child into Willowbrook because they couldn’t deal with the child’s behaviors, even going as far as having IQ scores altered to make them eligible for admittance. And virtually everyone who was examined got in. Why do you think the people in charge let that happen? Why would they commit non-disabled children? Have you heard of hospitals, schools, or centers for “troubled kids” that exist today? Have any of them been accused of neglect or abuse?
How do you think Sage changed over the course of the novel? Which events do you think were most transformative?
While researching this novel, the author discovered that it wasn’t unusual for Willowbrook residents to kill themselves—some stopped eating, hung themselves, or simply disappeared. How do you think that information influenced the plot?
The idyllic campus of Willowbrook, with its expansive lawns, sweeping stands of trees, and brick buildings, belied the horror that was happening behind its walls. Do you think the citizens of Staten Island knew what was really going on there? Do you think they could have done anything to stop it?
This publication of this novel coincides with the 35th anniversary of Willowbrook’s long overdue closure on September 17, 1987. Even though Willowbrook no longer exists, do you think the issues it raises surrounding institutional abuse are still relevant today? Are there facilities currently operating that are or could become a “modern day Willowbrook?”
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