My Greatest Fear

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.

One response to “My Greatest Fear

  1. Hi, Ariane. I hope everything in Aspen is going well so far.

    Please know that you needn’t fear about Emma ever being subjected to such horror. I would NEVER EVER let that or anything bad ever happen to her, and neither would Nic. I had promised a few years ago to do whatever possible to continue to carry out your wishes for both children by whatever means necessary if the worst was ever to become reality. That promise holds stronger and truer than ever, as does my devoted attachment and love for your family (especially the kids). Nothing will ever deter me from standing by that unconditional promise – except, of course, if I kick the bucket too. Trust me when I say that I have Angelica’s full blessing, as well as overwhelming support from my friends and family. I’m not sure exactly how Nic will feel regarding Emma’s care when he turns 18, but I can’t foresee any conflict. Plus, by then who knows how incredibly independent she will be. The fact of the matter is, Emma is family and I’ll never turn my back on family.

    I know we can’t quite select or deselect our fears but I’d at least hope this could be downgraded to a minor fear. Not to mention that fears are counterproductive and we have our work cut out for us at the moment.

    That being said, please don’t die. Not today, not ever. We all like you best alive.

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