[27 September 2008]
PopMatters Contributing Editor
Back then, it just wasn’t done. Society shunned the family that “forced” their handicapped child on the rest of the world, and doctors relied on the institutionalized warehousing of the developmentally challenged, assuring their loved ones that the patient would be better off in such a setting. There was no true home care option. Private hospitals were for the rich and privileged, insurance unwilling to foot such a lifetime claim. If you were a parent in the late ‘50s, and found yourself caring for a child with Down’s Syndrome, severe mental deficiencies, or any other unacceptable ailment (frequently misdiagnosed), your offspring were shuttled away to someplace like Staten Island’s Willowbrook State School. It promised professional treatment and training. What really happened once they got there would become the sordid stuff of scandal.
Even after Bobby Kennedy lambasted its treatment of its patients, Willowbrook continued its cost cutting, cruel care-giving ways. When local investigative reporter Geraldo Rivera was given a key to the facility (and a heads up from a doctor quitting over the conditions), what he found would change the face of mental health care forever. Like a concentration camp, there was squalor, misery, and death. Children were naked and covered in feces, filth filled the air with an appalling, putrid odor, and when attendants and nurses were finally located, their overwhelming workload resulted in neglect, detachment, and other subhuman standards. This was 1971. Oddly enough, Willowbrook would stay open for almost another decade. While reforms were rampant, seems society’s acceptance of individuals with disabilities took a little while longer.
That’s the main message of Unforgotten: 25 Years After Willowbrook (finally arriving on DVD courtesy of City Lights Media). Made in the mid ‘90s, when words like “retardation” were still in fashion, this flash forward focus on four families (and one unfortunate man) that were forever touched by their time with the infamous facility is meant as a kind of reflection and critical closure. A talking head assessment of what life was like back when Ike was the President and prosperity ruled the emerging suburbs, we hear the heartsick stories of struggle and a sense of helplessness. For many outside the system, Willowbrook looked like an answer. It had all the Establishment trappings. Three decades later, it’s clear that no amount of shame could shelter these unfortunates from a bureaucracy incapable of being compassionate for them.
The main stories center around Patty and her incisive sisters, Luis and his harried older brother, and most importantly, the unbelievable case of cerebral palsy victim Bernard. Taken to Willowbrook after being wrongfully judged, the young man spent 18 years under some of the worst conditions imaginable. When Rivera shows up at the facility, Bernard is one of the individuals he interviews. The truth is apparent from the moment he opens his mouth - there is nothing wrong with this boy mentally. He is clearly incapacitated by some terminal physical ailment. Now in his 40s Bernard has a message for everyone watching Unforgotten. While he is a successful consultant, he dreamed of being a lawyer. A place like Willowbrook was supposed to tap into and nurture his potential - whatever it was. Instead, he spent nearly two decades in “Hell”, and his hopes were stolen from him.
It’s a clarion call that resounds throughout this extremely powerful documentary. When we learn about Luis, his severe limitations, and the sacrifices made by his family just to keep him safe and cared for, we feel nauseous inside. Not for the boy’s obvious issues, but ill from a world in which people like this are often cast out and left without viable options. Luis’s family, including his stoic sibling who stands in for most of the interview, look like the benefactors of clearly compartmentalized choices. While they trust the new facility he is in, they still spend most days by his side. The scars from Willowbrook are just that deep. It’s a similar situation to Patty’s. One sister even states how embarrassed she was of her “unusual” relative. The resulting tears simply rip you apart inside.
Like the forgotten legacy of segregation, there is a clear sense of ‘out of sight, out of mind’ when it comes to the way in which circumstances such as these were dealt with in the past. For individuals of a certain age, the notion of a family simply “forgetting” that they had a handicapped relative was not unheard of. Some households even hid pictures of the “problem child”, sequestering him or her away like some Gothic mystery secret. They became the subject of whispered conjecture. No one spoke of such things in polite and proper circles, and as is the case with Patty’s late father, many men felt the birth of such as baby as a stain against their masculinity and potency. By the time of Unforgotten, a great many of these attitudes had changed. By 2008 - the year of the DVDs release - we’ve become even more aware and active.
Part of the problem with remembering is perspective. It is easy to dismiss what came before, especially when today’s policies promote respect, and grassroots groups win legislative battles and mandate services. City Lights wants individuals to participate in the process, and as part of the digital package offered, they present information on how to get involved. But the biggest service they do to the continuing cause is the presentation of Geraldo Rivera’s complete half hour report circa 1971. Even in light of what we know now, it’s devastating stuff. The images are straight out of a horror film, the so-called “snake pit” warned of by RFK is more like a torture chamber when Rivera arrives. Naked children are covered in filth. Patients are seen shoveling soggy food into their faces, their mealtimes cut down to mere minutes. When it was first opened, Willowbrook was rated for 2000 ‘students’. By the time Rivera uncovered the corruption, there was upwards of 5000.
As narrator Danny Aiello explains, there were lots of reasons Willowbrook wound up a national calamity. Rising costs produced budget cuts. Staff demands resulted in hiring difficulties, and then freezes. Soon, the patient to attendant ratio (originally set somewhere at four to one) had risen to 70 to 1. As Rivera points out in his updated Q&A, there was no way such a strategy would or could have worked. Outside the arrogance of thinking that human behavior could be promoted and protected in a clinical, insular environment, what the wounded of Willowbrook really needed was love - especially the comfort that comes from family. Some 25 years after the fact, the relatives of those affected are still learning said acceptance. Thankfully, we’ve come along way in making sure it will never happen again…we hope.