Saturday, January 10, 2015

Carly's voice has been silenced - where is the outrage? - by Tanja Guven

It has recently been brought to my attention that a non-verbal autistic teen, Carly Fleischmann, 17 years old and unable to speak due to oral-motor apraxia, who learned how to communicate via typing at the age of ten years old, was from April until recently silenced by the actions of her parents, who saw fit to subject her to ECT for OCD, surely while knowing the risks of such a procedure.

Whether Carly’s permission was asked is unclear, but the procedure was done in any case. It is unclear whether Carly consented, and if so, if she consented with full knowledge of what was to be done to her. In many cases, declarative and procedural memory are lost, with devastating consequences.

In this case, Carly unlearned how to speak, and only recently issued a distress signal somewhere from inside her battered brain, pleading for help and expressing her confusion and pain. Within the timeline on Carly’s Facebook page was a post by her father, in close proximity to Carly, and many comments sending the prayers and good wishes from various readers of the page, with one strikingly absent among them: outrage.

Tacit among them was acceptance of what had been done to her as normal, as if it had simply been an act of God, or more precisely, the prudent act of loving parents, despite the fact that it had nearly severed the only links with the outside world that she had ever had.

Whether Carly was lied to, and perhaps told that the treatment would allow her to speak orally, as she wanted, is unknown, as is the possibility of any consent having been obtained at all to undergo such a procedure. In this, the vast gulf of separation between the rights and the medical model of disability becomes horribly apparent.

Autism Speaks demonstrates this perfectly, by exploiting the fears and frustrations of the parents, and eliciting donations that should go to adaptively easing the condition, which claim to go towards a cure, and which actually go towards its own profits, periodically releasing foolhardy and potentially injurious treatments for their children, such as the therapeutic internal use of bleach on the gut, which directly incites violence in a polite fashion, and feeding hatred of their children.

Who can love that which is described as cancer? Who can empathize with or relate to or co-exist with cancer? To attempt to extricate someone from their autism is as productive as trying to remove the stone from an onion, for that is intrinsic to whom they are and always have been. It is a brotherhood and sisterhood of the inside of the skull.

That this is accepted, and never questioned, is disturbing. It is disturbing that a person with an inner life should be kept caged and systematically battered in a way that makes his or her most personally distressing deficits worse, and that this has not been labeled as wrong or abnormal in itself.

It is time that endless attention was turned away from the inherent qualities of a person, and more was turned towards the logistical and legal circumstances which shape that person’s life around them, especially to those creating them, and for whom the conflict of interest is strongest.

-Tanja Guven

3 comments:

  1. #wherescarly
    Carly's final post 3 Dec 2014, 9 months since her previous post:
    "i cabnt typerc anymmyore ectt didfd thisds to meed brayiin is scrrammbellld needdc fdocttor helphgfi"

    Tidied:
    "I cant type anymore ECT did this to me brain is scrambled need doctor help"

    People do care. People have expressed concern for her on her page. None of those have been responded to. Thanks for keeping this issue visible.

    #wherescarly

    ReplyDelete
    Replies
    1. Yes, have you heard anything recently

      Delete
  2. There was quite a bit of outrage on her page the day she (followed by her father) posted.
    I personally engaged quite a few times that day.

    ReplyDelete