My single greatest fear is when Richard and I die Emma will be institutionalized. It is a nightmare I try hard not to dwell on. So when I read articles like this one from the New York Times, http://www.nytimes.com/2011/03/13/nyregion/13homes.html
regarding the rampant abuse in homes for disabled people I am more than horrified. I am terrified and left feeling nauseous. It is like waking from a nightmare only to realize the nightmare is real.
The final line in the article is a quote from a memo that was sent out to all staff at a group home: “DON’T report in your notes that an Incident Report was filled out,” the instructions said, adding: “IF IT ISN’T DOCUMENTED, IT WASN’T DONE.”
That final quote says it all. The utter disregard for humanity, the unwillingness to see the disabled, whether mentally or physically, as nothing more than easy prey has become so commonplace as to be suitable for a memo.
Over the years we have heard Emma repeat things said to her, things she even now repeats, years later. Often they are things said to her in anger, and because she mimics the person, is so good at capturing their tone, their accent if they have one and their inflections, we often have been able to determine who has said these things to her. Usually they are benign comments such as – “don’t put playdoh in your mouth” or “line up!” or “Emma! Sit down!” Nothing abusive, all within what one might expect from teachers, caregivers, therapists etc.
But once, Emma came home and started yelling – “Sit down! You sit down right now!” “No you cannot leave!”
From those words I was given enough information to ask her a number of questions and realized her bus driver was yelling at her.
The next morning we spoke with her driver who it turns out was getting to her school before the school was open and so, instead of telling us and changing her pick up time, decided to let the bus sit idling outside the school for half and hour with Emma in it. When she stood up to leave, seeing that they were at her school and with little sense of time, the driver started yelling at her. Fortunately she had enough language for us to figure out what was going on. We immediately complained to the Office of Public Transportation, wrote a letter to our lawyer and put a stop to it. The next morning she had a new driver and a new pick up time.
We have been lucky so far.