Unspeakable

That's what we call the things that are so awful, so heartbreaking, they stop the words in our throats and the thoughts in our heads. Sometimes they even stop the tears in our eyes; the sadness we feel is so heavy it will not be cried out.

For me, the abuse, neglect and murder of people with disabilities* by the people who are supposed to be taking care of them calls up this heavy sadness.

From Leah Jane's blog:

A lot of my neurotypical friends don't understand why I am so paranoid about going to an institution. They think, for one, that it could never happen to me, because I'm intelligent and express myself eloquently, and secondly, they don't think it could be all that bad for someone like me, who is mostly able-bodied save for troubles with my back from scoliosis, since I could feed myself, ask for private time, and go to the bathroom alone. There is also often this assumption that goes unchallenged that the disabled have it made in the U.S., that we're lucky not to be living in a country where we'd be kept in cages or denied food and water. So I often end up shoving stories like this in their faces, reminding the world that being cognitively, not physically, disabled, or living in America is no guarantee of your human rights being respected.

From the news story she links to:

Jonathan Carey did not die for lack of money.

New York State and the federal government provided $1.4 million annually per person to care for Jonathan and the other residents at the Oswald D. Heck Developmental Center, a warren of low-rise concrete and brick buildings near Albany.

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

"I could be a good king or a bad king," he told the dying boy beneath him, according to court documents.

In the front seat of the van, the driver, another state worker at O.D. Heck, watched through the rear-view mirror but said little. He had been fired from four different private providers of services to the developmentally disabled before the state hired him to care for the same vulnerable population.

O.D. Heck is one of nine large institutions in New York that house the developmentally disabled, those with cerebral palsy, autism, Down syndrome and other conditions.

...

But the institutions are hardly a model: Those who run them have tolerated physical and psychological abuse, knowingly hired unqualified workers, ignored complaints by whistle-blowers and failed to credibly investigate cases of abuse and neglect, according to a review by the New York Times of thousands of state records and court documents, along with interviews of current and former employees.

...

Similar problems can be found across the state. The Broome Developmental Center in Binghamton has been cited for repeatedly failing to protect residents from staff members. One employee there was merely reassigned after encouraging adolescent residents to fight one another.

Patterns of abuse appear embedded in the culture of the Sunmount Developmental Center in the Adirondacks. Last year, one supervisor was accused of four different episodes of physical and psychological abuse of residents within a span of two and a half months; another employee bragged on Facebook about "beating retards."

The most damning accounts of the operations come from employees --- thwarted whistle-blowers from around the state --- and the beleaguered family members of residents.

...

For the Careys, the journey to O.D. Heck was a last resort. ... [They] raised Jonathan until he was 9, but became worried that they could not teach their son basic living skills, like toilet training. They enrolled him at the Anderson Center for Autism, a privately run school in the Hudson Valley overseen by the state.

At first, the school seemed a good fit, until Jonathan, who was always thin, began losing weight. During one visit, an employee told the Careys to take home a duffel bag they had never used. They discovered a logbook inside the bag detailing startling changes to Jonathan's treatment plan. Among other things, the school was withholding food from Jonathan to punish him for taking off his shirt at inappropriate times.

"They literally planned to withhold my son's meals," Mr. Carey said. "And when that was not working, then they began to seclude him in his bedroom for an extended period of time. He missed eight full days of school."

So, to save him from possible death by starvation, Jonathan's parents removed him from that school and tried to take care of him at home again, but his problems had gotten worse. He had tantrums, he would run away, and Mr. and Mrs. Carey didn't think they could keep him safe, so they were referred to O.D. Heck. There was maybe a year and a half between Jonathan's admission to that school and his death in the back of the van. During that period, he was hospitalized three times with unexplained injuries.

It should be obvious from what I've quoted of this (lengthy) article that this is systemic.

It should be equally obvious that this sort of abuse is not restricted to any one kind of institution: the New York Times investigation found that the same culture of abuse detailed above, at the nine large institutions, also pervaded New York's 2,000 smaller group homes. Nor is it just restricted to New York --- last fall, the Chicago Tribune investigated thirteen deaths at a single nursing home, Alden Village North, that occurred over the past ten years. Similarly, stories of people with disabilities being abused, neglected or killed in their homes by family members appear in the news with some regularity. (Most recently, in my area, a young woman was sentenced to eight years and six months in prison for confining her six-year-old son with Down syndrome to an attic and starving him. The boy survived, and is now in foster care with his two sisters).

I think there are a lot of factors that work together to make this such a ubiquitous thing in our culture; the two biggest ones I can come up with now are 1) horrible societal attitudes toward disabled people, and 2) horrible societal attitudes toward caregiving. It's easy to see how the first one would contribute to a culture of abuse: it's always easier to abuse someone if you don't see them as a person. But I also think the undervaluing of caregivers plays a role, too --- the institutions in those news stories wouldn't have hired people with criminal convictions (or previous dismissals from other institutions) if they'd really thought caregiving was an important task that can't be entrusted to just anyone. The chronic understaffing of institutions is another symptom of this undervaluing --- caregiving is hard work, with long, irregular hours, and the pay is low, so they're always short on people who are willing to do it. Then, because of the perennial labor shortage, the people who run institutions are unwilling to fire people even for serious offenses.

I'm also starting to think that "unspeakable" is precisely the wrong word for such atrocities. Unspeakable means something we never talk about, something repressed. It means we can sweep it under the rug and pretend it doesn't happen, or that when it happens it's an aberration. And people want very much to believe institutions are safe, that their children or parents will be happy there.

*I feel similarly about abuse of children or animals by their guardians, or of women by the men they love. But this post deals with issues specific to people with disabilities, so I'm going to restrict my discussion to that.