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This blog is about Emma.  It has always been about Emma.  Every now and again I post something about statistics or links to other children or adults who have been diagnosed with autism, the occasional news item, but for the most part, Emma is the star of this blog.  Today however, I feel compelled to write about the children and adults with disabilities who have been institutionalized.  The defenseless portion of our population who do not have parents or families to advocate and defend them for whatever reason.

Yesterday I happened upon an article in the New York Times about a 13 year old boy with autism who was sat on and ultimately crushed to death in the back seat of a van while being taunted, “I could be a good king or a bad king,” by a state employee who was hired to care for the child.  The article goes on to describe in graphic detail the abuse that occurred, the repeated hospitalizations, the horrifying conditions of the Oswald D. Heck Developmental Center,  a state run home for children and people with disabilities near Albany, New York.  An institution which routinely hires high school drop outs, people with criminal records, histories of drug and alcohol abuse and little or no training to care for our most vulnerable.

It is difficult not to console oneself, while reading such an article, with the idea that this was an isolated incident or at least a problem within this specific institution.  Sadly it is not.  Another article, also in the New York Times, which ran a few months ago about the systematic abuse that continues in several group homes was equally horrifying.   The BBC ran a piece just last week on the terrifying cruelty and abuse in homes caring for the disabled in the UK.  In fact, once I began digging around it wasn’t hard to find countless articles about rampant abuse taking place in group homes, state run facilities, institutions, privately run group homes all for the disabled, those diagnosed with autism, downs syndrome, cerebral palsy and the like.  What was incredible was the amount of actual video footage of the abuse, testimony from witnesses, doctors, nurses, hospital records, irrefutable proof and yet it continues.

We talk about torture, the horrors of genocide all in the context of war and yet we have people, here in America, doing unspeakable things to our disabled population and it goes unnoticed, in fact it is even condoned within many of these homes.  There is a “keep your eyes open and your mouth shut” policy at many of these homes.  We have a burgeoning population of defenseless, often non-verbal children and adults who are being raped and tortured.  If you object to the use of the words “rape and torture” consider this from the NY Times on March 12, 2011 by Danny Hakim:

“At a home upstate in Hudson Falls, two days before Christmas in 2006, an employee discovered her supervisor, Ricky W. Sousie, in the bedroom of a severely disabled, 54-year-old woman. Mr. Sousie, a stocky man with wispy hair, was standing between the woman’s legs. His pants were around his ankles, his hand was on her knee and her diaper was pulled down.  The police were called, and semen was found on the victim. But the state did not seek to discipline Mr. Sousie. Instead, it transferred him to work at another home.”

The BBC report on May 31, 2011 – “…Wayne restrained Simone, an 18-year-old who suffers from a genetic abnormality, by pinning her down under his chair for half an hour. Another member of staff holds her in a headlock, despite the fact she shows no signs of resistance.

The footage also shows Simone being subjected to two cold showers in a single day with staff pouring mouthwash and shampoo over her she screams, saying: “It’s cold mum”.

That afternoon, with temperatures just above freezing, Wayne is filmed taking Simone into the garden and pouring a jug of cold water over her head. He only relents and takes her inside after she lies listlessly on the ground, convulsing with cold.

When Simone is unable to sleep that night staff repeatedly pour cold water over her in the corridor, before holding a cold fan to her face.

The day ends with staff dragging her into her room and forcing her to take a paracetamol while Graham, another member of staff, plays the role of German commandant shouting: “Nein, nein, nein”. Despite the serious nature of the abuse Kelvin, a senior nurse, refuses to intervene.”

We say things like – “never again,” we want to believe we learn from our mistakes, from history and yet there is no evidence to support this kind of thinking.  The population that is being abused in all of these reports are our most vulnerable – children and adults who cannot speak out, who cannot accuse, who cannot defend themselves.  And yet it goes on.  There is nothing new about any of this.  The reports of abuse are haunting, horrible, beyond description, the brutality, the sadism, the cruelty is inhuman, all the more so because it is children and adults with disabilities being victimized.

And yet it continues.

What can any one of us do?

We can begin by confronting and honoring what is happening by speaking out against it, by demanding the politicians we vote into office are aware and are willing to take a stand.  This is not a problem that will go away because we want it to, because it’s too painful to read about.  It will only end when we decide it deserves our attention as much as the populations of various countries we have chosen to defend by sending our troops to.