Wednesday, January 27, 2010

Szatmari appointment

We had appointment yesterday with doctor Szatmari. I am not sure of the hierarchy in their organization but to my understanding he is a boss of the discharge papers signer doctor Jo-Ann Reitzel.

I do not think it a coincidence that doctor Reitzel received $150 000 to conduct the study three years ago:
A research study that may provide hope of finding an effective, alternative intervention for children with autism who do not respond to Intensive Behavioural Intervention (IBI), is being conducted under the leadership of McMaster University.

The true motive behind that study seems to be providing justification for the discharge of low functioning autistic children from therapy-- the dirty work of moping up and masking government inefficiency in providing life-changing treatment to one of the most vulnerable groups of children imaginable.

Talking to those highly trained, highly educated and aware professionals who deal with me - a nuisance in their otherwise comfortable professional lives - with polite, very insincere looking smiles, is a mind boggling experience for me. Because they know. They are very well aware of consequences of their actions. And they actively participate in supporting a system that fails thousands of vulnerable children. Denying known and available treatment ruins the lives of the children and their families, and is such a waste of human potential. A generation lost. And they know.

Why are they doing it?
I think making a comfortable living, gaining prestige, a pension comes from supporting whatever policy their employer (the government) expects of them. And they do their jobs well. Hundreds of children discharged. Thousand on waiting lists. Thousands off waiting lists. And in spite of it all, beautiful reports. Fantastic looking on paper polices. Everything supported by studies. Reports with signatures of people with degrees and scientific titles.
And who will prove them wrong? Low functioning autistic kids?

And yet I know from my direct experience that political winds change directions. Entire climates change. I grew up in communist country that is not communist any longer. I grew up in a country that was once under Nazi occupation. It was absolutely acceptable for them just to kill the mentally deficient. They also had avery efficient system, supported by scientists who were helping to justify improving their race by eliminating the inferior. The mentally deficient were the very first victims of the regime. In our society we do not kill. We let die. And autistic kids without treatment do not even die. They just fail to thrive. They die when they are older, and then their deaths are called unfortunate accidents.

I have a dream that one day I will live in the place where scientifically proven treatments will not be denied to a child because his IQ score is less than certain number, less than 35 - for example.

2 comments:

  1. you are right Maryna. Sometimes I see no hope and I want to beleive all the conspiracy theories that are out there. Only God knows. God decides and no one can play God.

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  2. Your description does not seem like a conspiracy theory to me. Conspiracy theories presuppose a consciously held intention to do harm, while these people are simply "doing their jobs". If they were to consciously acknowledge what they are doing, they would experience "cognitive dissonance". As for God, the poet William Blake eloquently described what we humans can know of divinity as "a voice of righteous indignation".

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