Echoes of Willowbrook

Posted: August 20, 2008 in Delving Deeper

By Mark E. Smith

When one discusses “institutions for those with disabilities,” Willowbrook State School must come up. From 1947 to 1987, Staten Island’s Willowbrook was among the nation’s largest facilities for children with disabilities – and, ultimately, among the most horrific. In a February 1972 article, Time reported, “[Willowbrook] resembles Sartre’s vision of Hell. Bare and high-ceilinged, its walls covered with flaking green paint, the room is redolent of sweat, urine, excrement – and despair.”

In the 1960s, children with disabilities at Willowbrook were intentionally given hepatitis as medical experiments, and by the 1970s, they were subject to unimaginable neglect and abuse. In 1972, a then-29-year-old Geraldo Rivera performed an undercover news investigation of Willowbrook that awoke our nation, showing how the institution housed 5,000 children and teens in a facility for 2,000, in unimaginably repugnant conditions. He showed how residents were neglected, treated literally as caged animals in some cases. He showed proof of ramped physical and sexual abuse by staff members. And, he showed how some of the residence, placed there as infants by scared or coerced parents, had absolutely no reason to be there – that is, they were children with misunderstood disabilities that didn’t effect their cognitive skills in any way.

As Willowbrook’s population was described in the Time article, “By night, the children, many of whom have physical handicaps as well, sleep in closely spaced cribs. By day, they sit strapped into special chairs, recline in two-wheeled wagons that look like peddler’s pushcarts or lie listlessly on mats on the floor. Some of the youngsters weep or grunt unintelligibly; most make no sound at all. Children with severe physical handicaps but normal intellects share the accommodations; families unable to care for them have made them wards of the state.”

In the mid 1970s, based on the media’s exposure, and subsequent public outrage, New York state began cleaning up and shutting down Willowbrook. But, it was too late – countless children died from neglect, and those who survived were so underdeveloped and traumatized that most were unable to ever lead normal lives, merely transferred to new facilities, where very few Willowbrook residents are alive today.

Willowbrook, in fact, was such a horrific case study, that the federal government enacted the Civil Rights of Institutionalized Persons Act of 1980, hopefully ensuring that another Willowbrook could never occur. And, in 1987, Willowbrook closed its doors permanently.

Here we are some 21 years after the last doors of Willowbrook shut, and while literal facilities like it no longer exist – Gothic, echoing institutions now replaced by contemporary “centers,” “homes,” and “schools” – the children still do exist, only in a new generation. Across this nation, children with disabilities remain “institutionalized,” tucked away from society, where we know that neglect and abuse remains, as with the ongoing reports on Texas’ state “schools” for the disabled, where incidents have been most notably flooding out of its Denton facility, to the sum of 10 deaths and 60 questionable injuries of residence in the last nine months alone. To paraphrase what a retired facility director recently told me about care facilities in general, any time that there’s a large group of residents with complex needs, cared for by low-paid, unskilled workers, with high employee turn-over rates, and a lack of family involvement, residents are at tremendous risk for abuse. From Willowbrook to Denton, the locations and generations change; however, unspeakable crimes against our society’s most vulnerable – children with disabilities – remain.

Now, the fact is, not all care facilities are bad, and many provide absolutely necessary long-term care for those with multiple disabilities, some well beyond the care that even the most dedicated parents and in-home caregivers can offer. Surely, such facilities are needed and they are unquestionably humane, ensuring the health and safety of residents.

However, as someone who’s visited several “schools for the disabled,” what weighs heavily on me are the children who I’ve seen who simply shouldn’t be there – that is, children who are “institutionalized,” not based on disability, but based on what can only be explained by the inexcusable lack of accountability and humanity of some parents – and a system that supports such poor behavior.

The fact is, in every facility that I’ve visited, I’ve seen children, adolescents, and teenagers with no cognitive disabilities – that is, they have no mental disabilities whatsoever – where many of these children had non-critical medical necessities, either. Some of the children had cerebral palsy, some with muscular dystrophy, and others with forms of dwarfism – not medical reasons to “institutionalize” children under any circumstance in today’s world. Of course, I’ve confidentially asked workers why certain children were in a given facility, why a child with cerebral palsy, with no cognitive difficulties or complex care needs, for example, would live at a “school” with others of multiple disabilities, surrounded by chaos, isolated from a normal childhood? “I’ve had a parent tell me flat-out that her handicapped kid didn’t fit with their lifestyle,” one worker explained to me.

It’s striking to think about the potentials being lost – and the exposure of risk – from physically disabled children being “institutionalized.” In 2008, it needs no explanation that children with physical disabilities live fully-integrated, productive lives, where they attend public schools, graduate from college, and go on to successful careers. What’s more, there are more in-home support resources for families with a disabled child than ever before. There’s simply no reason why any parent or culture should allow a physically disabled child to whither in an institution – all potential and dignity stripped – in the United States today.

Indeed, this is a very personal subject to me, both as an individual with a disability, as well as a parent. As an infant with a severe disability, in the era of Willowbrook, my course was set by my own doctors for institutionalization. No, my parents weren’t educated, or sophisticated, or even emotionally healthy; however, they were decent enough people at their cores to know that under no circumstance did you place your physically disabled child in an institution. It wasn’t that my parents were martyrs, or saints, or extraordinary in any way; rather, they simply had basic humanity.

And, I have to ask, where’s the humanity in the parents today who have so much more going for them than those families of 40 years ago facing raising a child with a disability, yet, they’re still placing their physically disabled children in institutions? How does any parent explain to their child with cerebral palsy, muscular dystrophy, or dwarfism that his siblings get their own bedrooms, get to attend school, and get to celebrate Thanksgiving with Grandma and Grandpa, but he’ll be living in a facility three states away with strangers caring for him, surrounded by those with multiple disabilities, likely neglected and abused at some point?

Typically, such parents answer the question by convincing others that placing their child in an institution is their only choice, that it’s unimaginably impossible to care for such a child. However, such justifications by parents is a complete and total self-serving cop-out, a shunning of their obligations, a lack of parental accountability. As I always point out, if it’s so impossible for parents to care for physically disabled children, how are hundreds of thousands of parents doing it every day?

With humanity and accountability – that’s how. In a poignant twist, I’m not a parent who has a child with a disability, but I am a parent with a disability who has a child. And, as a father, I can’t fathom doing any less than whatever it takes to care for my daughter in the healthiest forms possible – that’s my obligation. In this way, I can unquestionably empathize with the anguish of parents who must put their children with multiple disabilities in care facilities, while I conversely have no capacity to understand how any parent of a fully-cognitive child with a physical disability could elect to effectively institutionalize them? Again, my daughter doesn’t have a disability, but even if she did, the rules wouldn’t change: As a parent, my role is to treat my child with unyielding dedication, fostering all of her potentials in life – regardless of disability or otherwise. And, it’s clear that some parents need to place the welfare and upbringing of their children above their own wants, looking at a child with a disability not as a burden, but as just that, their child.

Supposedly, the doors of Willowbrook closed 21 years ago. However, clearly, they still haven’t been entirely locked.

Comments
  1. Brian says:

    Well written Mr. Smith. A good reminder to all of us to step up and do the right thing even when it might take us on the more difficult (yet more rewarding) path.

  2. Sarita says:

    My parents were advised by doctors in 1966 to institutionalize my younger brother with Downs Syndrome. Thank God they didn”t He inspired me to be a Pediatric Neurologist. What I do is easy,what they did was difficult.They were given no financial aide until he turned 18 years old. I take care of him to this day. He’ll be celebrating his 42nd birthday this Sept. I looked at your site since my husband who’s studying to be a teacher just watched a documentary on Willow Brook.
    Thank you

  3. Megan says:

    Wow! I could not have said it better. Further still, it frustrates me when parents who do keep their children fail to take them to therapy or fight for their rights in school because it is too hard.

    My oldest son has moderately severe CP. So far we are blessed with no major issues like seizures. He has feeding problems and can not yet speak. He is happy and smart despite what the school thinks of him.

    My youngest has a form of Autism. We decided then we were done having children because we wanted to be able to provide enough time and care to the ones we have. Our youngest is also smart and happy.

    After my second child’s birth, I was diagnosed with a moderate physical disability which I had been fighting for years. It got significantly worse after his birth and it was finally diagnosed. I no longer work. I take my boys to the doctor and therapy. I go to school meetings. We sacrifice the money and budget so that I can do everything for them I need to.

    Is it hard? Yes! I wouldn’t take it back. This is who my kids are and I love them. They deserve this. I also feel very strongly that with children with issues like Autism, if you don’t deal with the issues when they are young, you may have a teenager that still hits and screams because you were too busy to take them to therapy and then institutionalization may be the only option.

    We as parents of special needs kids must work and fight for our kids. They have the highest risk for abuse.

    I don’t get much help especially with my husband being military, though we do have great insurance at least. I wish I could get meaningful help sometimes. I would love a break, or a wheelchair accessible van for that matter, but people with less have done more. If they can do it so can I. If I can do it, so can anyone.

  4. christina says:

    before i came to your site, i went like i always do, to foxnews.com to read the news…..well, something caught my eye…….it was a 3-part video clip on the horrors of willowbrook, the reporting geraldo rivera. wow, i was totally shocked! I am 36 years old, born in the year of that now infamous documentary…….if i didn’t see it, i wouldn’t of believed it!……now it has been a 4 hours since i watched them, but i can’t get those images out of my head……..those poor helpless children laying in their own waste, children and adults roaming around naked in dark “dorm” rooms, those conditions……i don’t understand!!! why did it take so long for them to do something about it??? it was opened for disabled people in the 50’s and i heard and read many complained about that “house of hell”, and then, in ’72 it was seen nationwide, what that hell is wrong with everyone in this world? couldn’t they see that it needed to be shut down in ’72? why did it stay open until ’87???? why did it take so long for this? that is 13 years in those patients lives? what happened to the people that died there? what about the lost souls of willowbrook? the ones that were just left there by parents that didn’t want to be bothered?? 13 years more? why, oh god! why??!!

  5. k_lynn says:

    Hello, I work with some of the few surviving willowbrook patients, and they are much happier now i work with them on a day to day basis, they get into the public and get to do “normal” things some have jobs others live the life that they want. Willowbrook was terrible, and some of the inside stories that I have heard about Willowbrook does not even compete with this article. However it is nice to see some people stand up and have a voice, my grandma once told me “They are angels in disguise, they are so innecent.”

  6. Robin Rettie says:

    My sister, Laurie Lorraine Rettie, died at Willowbrook State School in 1969. I am looking for information about the school and historical facts.
    Thank you,
    Robin
    713-560-7923

  7. dana says:

    Any parent that leaves their kid abandoned to be cared for in an institute is just as monsterous as those that abused or neglect! rot in hell just as rand will! what yall are accountable for is their deaths! as a parent you need to care for them at best you can even if the funds are undoable they will manage wonderfully with your support and love!

    • ellen says:

      Thats what I was wondering Dana. With all the 6,000 patients at Willowbrook why was this abuse and neglect overlooked? Didn’t anyone ever visit these poor souls and bring toys, soup, pictures etc. even if they did have severe mental illnesses. I’m sure they can feel and know love too. This has always puzzled me, patients on that grand of a scale and Nobody saw/knew/said anything?

  8. My mother and I both used to drive disabled children to school – they could not ride busses so they were taken in vans. At first there was a “special” school for them – and I remember those teachers were awesome. For some of the children, their time at school was the best attention they received. Many of these kids were dirty, not bathed in days…broke your heart. The school was a better parent than their mothers were. Not all the kids were neglected, but many were. 😦 It’s disgusting to think something like Willowbrook went on and on without anyone’s intervention for so many years. I agree…what was wrong with those parents? How could the LEAVE their child there after visiting the place?

    • Lela says:

      Great question Karen!!! The reality is we are a blame driven society, “the Dr said to put him/her in the institution, “I had no money”, etc…NO NORMAL PERSON WOULD LEAVE THEIR CHILD THERE ESPESIALLY AFTER ONE VISIT. however, not only “good moms” left their kids there, but after the scandal broke out and millions were paid out to “suffering moms and dads”, they did not bother taking their kids home. Interesting, is not it?

  9. korina says:

    Hello,
    I enjoyed reading your article! I am the mother of a 26 year old mentally impaired son. I am currently doing a term paper on the Willowbrook State School…what a joke that they could even call it a school. I am mortified at the term “school”….such sadness and disbelief! I continue to advocate for my son and could not ever imagine just leaving him somewhere and forgetting about him as so many did and still do!!!! I thank GOD that he was born in this day and age so that there was more knowledge available and I was able to keep him with me until he became an adult! Of course I still fight and almost have to beg to get him services we are getting there…thanks again for sharing your article! Korina in Michigan

  10. james says:

    i stayed at willowbrook for 16 years and it sucked. we ha dno shoes and kids pee on the floor and u would step in it or there shit.

  11. Laurie Jones-Prizel says:

    I a seeking my masters in health care adminstration but am seeking to continue to work in the field I love ..Working for people with intellutal disabilities. I am doing a research project on the progress of this field. With a specialized interest in willowbrook residence. Can anyone out there help me connect to anyone who has lived or worked there?

  12. Aque says:

    I have been browsing oinlne greater than three hours lately, yet I never discovered any fascinating write-up like yours. It is beautiful worth enough for me. In my view, if all webmasters and bloggers made good content material material as you probably did, the net can be much more useful than ever before.

  13. I had a cousin who died at Willowbrook in the 1970s and I was wondering whether anyone might know a way I can find out what happened to him. His name was Martin (Marty) Kaminsky. Can anyone help me? THanks!

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