Willowbrook State School--A Lesson For Humanity

Greetings All~

Welcome to a brief history of the Willowbrook State School, which includes a short story about one former resident's experience--my mother.

Although, Willowbrook has been closed for more than 20 years, it's presence lives on for those who have lived and worked there and for their families as well. Their stories and experiences are valued.

All comments are welcomed, especially personal experiences. Please feel free to post comments directly on the blog or if you like, you can contact me directly at ava6205@yahoo.com Please put Willowbrook in the subject line.

Best Regards,
Vanessa Leigh DeBello

Willowbrook Documentary on Amazon

Get the new version of Unforgotten: 25 Years After Willowbrook, which includes the original footage of Geraldo Rivera's 1972 expose.

Access to Former Willowbrook Residents

Due to strict privacy laws, families are denied access to information about their relatives whereabouts. For some, it's a matter of knowing whether the individual is dead or alive, and if so, where are they located.

For families of deceased former Willowbrook residents, the question is, where are they now? There is no concrete information concerning the burials of these children. Some claim, that they were sent to mortuaries outside of the Willowbrook compound. However, reports were made by workers during the deconstruction of Willowbrook that bones were found on the property--no names, no dates.

To date, there has been no "official inquiry" made to OMRDD. Each month, individuals looking for information about family members come to this blog in hopes of finding a clue that might lead them to their long lost relative.

Below is the link to the May 8th, 2008 article in the New York Times about Jean Moore's experience looking for information about her deceased brother.

http://www.nytimes.com/2008/05/08/nyregion/08towns.html?_r=1&ref=todayspaper&oref=slogin

If you are looking for a missing relative, please feel free to post a comment in the section entitled "Get Connected with Other Willowbrook People," explaining your situation and/or email Vanessa Leigh DeBello at ava6205@yahoo.com with Willowbrook in the subject line.

Get Connected with other Willowbrook People

This section is designed to help those who are looking for other Willowbrook people, perhaps a lost loved one, a friend or former work mate.

Please post comment and be specific about who you are looking for, dates and other identifying information. We also request that all respect the privacy and rights of others.

If you need any help in this regards, please feel free to contact me at: ava6205@yahoo.com and put Willowbrook in the subject line. Currently I am creating a database of individuals who were connected to Willowbrook in some way.

If you need assistance in obtaining medical records or would like to contribute to an oral history being put together by the College of Staten Island, please visit their site below.

http://www.library.csi.cuny.edu/archives/WillowbrookDoc.htm

Thank you.

WILLOWBROOK IN THE NEWS

Please take a look at the recent (March 7th, 2008) interview about Willowbrook on National Public Radio (NPR).

http://www.npr.org/templates/rundowns/rundown.php?prgId=47&prgDate=03-07-2008&view=storyview







"Florence Viola McKee died at the Willowbrook State School in 1972. She was 67. Gerald Barth arrived there two years later. He was just 7.

Ms. McKee's granddaughter is looking for a place to grieve the grandmother she knows nothing about. Gerald's cousin is convinced he may still be alive, somewhere, somehow.

It's been more than three decades since former Advance reporter Jane Kurtin and a then-unknown Geraldo Rivera took the plight of the residents of Willowbrook public. But their families still ache to know what happened to those who went in and never came out -- or to those who were transferred to other institutions, without a trace."

...to read more of Stephanie Slepian's article, Searching for the Lost Souls of the Willowbrook State School in the Sunday edition of the Staten Island Advance (8-3-2008), click on the link below (or paste the url in your browser).

http://www.silive.com/news/index.ssf/2008/08/searching_for_the_lost_souls_o.html


The photo on the right is of a merry-go-round--one of the last original remnants of Willowbrook, located in a wooded area on OMRDD's property, adjacent to the College of Staten Island's campus. (Photo copyright © 2008 Vanessa DeBello)

Other Articles about The Willowbrook State School

Below is the link to a New York Times article about the closing ceremony of the Willowbrook State School. The Institution was closed in 1987, but all its residents were not placed into group homes until 1992. Read below for more details.



http://query.nytimes.com/gst/fullpage.html?res=9F0CE4D71E3EF931A25750C0A965958260&sec=health&spon=&pagewanted=1




Click on the link below to watch a short video clip from Geraldo Rivera's film--The Unforgotten. It will undoubtedly move you.


http://www.drckansas.org/video/30thAniv/segment2.wmv

Willowbrook Remembrance Update

Please join us at the College of Staten Island (2800 Victory Blvd) on April 2nd, 2008 for a discussion on Willowbrook entitled: "Willowbrook on Campus." Details Below:

The Lecture will feature faculty who are involved in research and teaching related to Willowbrook. The basic purpose of the program will be to inform the audience of this topic's rich pedagogic and scholarly opportunities.

Duncan Whiteside, a parent, will be opening the session with a description of his experiences with his son at Willowbrook.

In addition, alumni, Vanessa Leigh Debello, whose mother lived for a time at Willowbrook and who has been very vocal about the College and Willowbrook, and David Booth (OMRDD) and Ed Meehan (CSI), who represent an effective collaboration between the College and the current system serving people with developmental disabilities will also speak.

PLACE: The College of Staten Island

2800 Victory Blvd, Bldg 1P, Recital Hall

TIME: 3:30 pm

* * *

There will be a 2-Day Willowbrook Remembrance Event held at the College of Staten Island in October 2008. Please check back for complete details on the upcoming program.

If anyone has any photographs or personal stories they'd like to share, please contact Vanessa at the following email address: ava6205@yahoo.com and put Willowbrook in the subject line.

The History of the Willowbrook State School

Willowbrook State School, built in the late 1930’s, was a state-supported institution for mentally retarded children located in central Staten Island in New York City. The school did not receive its first residents, however, until after World War II, during which time it was used as a veteran’s hospital for injured and disabled war heroes. A combination of rising placements, budget cuts, ignorance, arrogance and indifference, created notorious conditions at Willowbrook. The school gained notoriety in the 1960’s for an unethical medical study conducted there. By 1965, with over 6,000 residents in an institution planned for just 4,000, Senator Robert Kennedy was calling Willowbrook a “snake pit,” yet however at this time public involvement was limited and conditions continued to worsen. It wasn’t until the early 1970’s that further abuses were uncovered at the school, becoming the stimulus for new civil rights legislation. In November 1971, The Staten Island Advance published a series of articles detailing the horrible conditions at the school. Following these articles, in January 1972, Geraldo Rivera, the television reporter, began a series of programs that shook the conscience of New York State and the nation and inspired parents and others to take legal action. The end result was the signing of a consent judgment in federal court in 1975.

The Consent Judgment has been called “revolutionary” because of what it accomplished and for what it inspired. The closure of Willowbrook, the placement of individuals with developmental disabilities in community residences, the growth of voluntary agencies and the expansion of day programs and special education can all be linked to the Judgment. The Judgment finally recognized and enforced the rights of individuals with mental retardation and developmental disabilities. And is now the model used throughout the United States and in many parts of the world.

The school was finally closed in 1987, and the former grounds were redeveloped extensively to serve as the campus of the College of Staten Island. Many of the buildings were knocked down due to their excessive neglect and need for major repair. However, many of the original buildings are still standing, formly residential buildings housing young girls and boys. These buildings are now used for offices and classrooms on both the North and South sides of the campus. The smoke stack and M buildings near the Victory Blouvard entrance are also originals. Years ago, these buildings were used for laundry services, preparing meals, which included a bakery, storage of food as well as other needed services. Willowbrook State School was a city within a city, quite self-sufficient in the daily running of the Institution, it did not require many services from outside it’s walls, therefore isolating itself and its’s residents from the community even more so. Today, these same buildings are used to process mail at the college and recently renovated, Staten Island’s new International High School opened in 2005.

HISTORY
Construction
In 1938, plans were formulated to build a facility for mentally retarded children on a 375 acres (1.5 km²) site in the Willowbrook section of the Staten Island. Construction was completed in 1942, but instead of opening for its original purpose, it was converted into a United States Army hospital and named Halloran General Hospital, after the late Colonel Paul Stacey Halloran. After the war, proposals were introduced to turn the site over to the Veterans Administration, but in October, 1947 the New York State Department of Mental Hygiene opened its facility there as originally planned, and the institution was named Willowbrook State School.

Hepatitis Studies
Throughout the first decade of its operation, outbreaks of hepatitis were common at the school, and this led to a highly controversial medical study being conducted there between 1963 and 1966, in which healthy children were intentionally injected with the virus that causes the disease.

These studies were designed to gain an understanding of the natural history of infectious hepatitis and subsequently to test the effects of gamma globulin in preventing or combating the disease.

The subjects, all children, were deliberately infected with the hepatitis virus; early subjects were fed extracts of stools from infected individuals and later subjects received injections of more purified virus preparations. Investigators defended the deliberate injection of these children by pointing out that the vast majority of them acquired the infection anyway while at Willowbrook, and perhaps it would be better for them to be infected under carefully controlled research conditions.

During the course of these studies, Willowbrook closed its doors to new patients, claiming overcrowded conditions. However, the hepatitis program, because it occupied its own space at the institution, was able to continue to admit new patients. Thus, in some cases, parents found that they were unable to admit their child to Willowbrook unless they agreed to his or her participation in the studies. This case caused a public outcry forcing the study to be discontinued because of the perception that parents and their children were given little choice about whether or not to participate in research.

More Scandals and Abuses
Further problems dogged the institution: In early 1972, Geraldo Rivera, then a reporter for television station WABC in New York, conducted a series of investigations at Willowbrook (on the heels of a previous series of articles in the Staten Island Advance and Staten Island Register newspapers), uncovering a host of deplorable conditions, including overcrowding, inadequate sanitary facilities, and physical abuse of residents by members of the school's staff. This resulted in a class-action lawsuit being filed against the State of New York in federal court on March 17, 1972. A settlement in the case was reached on May 5, 1975, mandating reforms at the site, but several years would elapse before all of the violations were corrected. The publicity generated by the case was a major contributing factor to the passage of a federal law, called the Civil Rights of Institutionalized Persons Act of 1980.

Closing the School
In 1983, the State of New York announced plans to close Willowbrook, which had been renamed the Staten Island Developmental Center in 1974. By the end of March 1986, the number of residents housed there had dwindled to 250 (down from 5,000 at the height of the scandal exposed by Rivera), and the last children left the grounds on September 17, 1987.

After the developmental center closed, the site became the focus of intense local debate about what should be done with the property. In 1989 a portion of the land was acquired by the City of New York, with the intent of using it to establish a new campus for the College of Staten Island. The new campus opened at Willowbrook in 1993 (at the same time, one of CSI's two other existing campuses, located in the island's Sunnyside neighborhood, was closed and that site became the home of a new high school). At 204 acres, this campus is the largest maintained by the City University of New York.

The remaining 171 acres of the state school's original property, at the south end, is still under the administration of the New York State Department of Mental Hygiene, which maintains a facility there called the Institute For Basic Research in Developmental Disabilities. At the Institution research is conducted on Down Syndrome, Autism, Alzheimer’s Disease and many rare diseases.