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.