[tri-med] Re: Evidence-based medicine

----- Original Message ----- 
From: "Barbara Farlow"
< I am glad to hear that you are working on a similar law in Aussie.
>
> As far as I am aware, there is absolutely nothing in the works in Canada.

There is nothing in the works here either really. It was years ago that the 
Law Reform Commission undertook the study and made their recommendations. I 
was quite active in the process and made a number of recommendations on 
behalf of our kids. But the study, like so many others, is just collecting 
dust. Nothing has happened with the recommendations and nothing will until 
someone does something overt, until we have evidence that it is happening, 
and it hits the headlines. The reason being is that most people do not want 
to think about going there in their own lives and until they do it remains 
academic and ethereal.

There is a lot of apathy within the community, peoples feelings are mixed at 
best. It was interesting being a part of the process believe me, so 
interesting that I wouldnt ever want to go there again without support. (I 
was physically gagged and intimidated by one of our peak genetic groups at 
one meeting). Most feel that the existing disability discrimination laws are 
sufficient. Australian disability discrimination laws are a mess, and best 
of all the government is exempt from disability discrimination laws. We 
can't even complain through through the United Nations because although we 
as a country have signed all the United Nations bills we can't complain 
about Australia not adhering to the bills because of they way in which they 
were signed. Any complaint to the UN must come from another country - it 
can't come from an individual.

But I digress, what I wanted to say and what I have been trying to say all 
week - you need to differentiate between attitude, especially an individuals 
attitude and actual law or policy. You can't really legislate against 
attitude, though we tend to try. Attitude can only be changed by education, 
removing fear of the unknown and the unimaginable. And I also think that 
there is a danger in legislating along those lines. The bottom line is that 
the majority feel that our kids, and even so many like our kids (eg even 
those with T-21) have no quality of life. They do lip service yes, because 
its politically correct, but in reality they would run a mile rather than 
walk the same path we do.

In my humble opinion invoking dogmatic legislation without choice is a 
dangerous slippery slope. Laws were meant to protect individuals and society 
not to remove choice, and certainly not meant to tell people how they should 
think, feel or act, that is a dictatorship, and yet that I think is what is 
happening all too often. If you tell someone that they must do something 
then you have to make sure that they have the ability and resources to do 
it.

> Here, rationing is being developed, in part, based on the "values of the 
> majority".

Can you give me any concrete papers on this happening - eg draft 
legislations or proposals. Even though our human rights and discrimination 
laws are a mess (in my opinion) I can't see that sort of thing getting 
through existing laws here. Didnt Canada sign the UN declarations on 
children and disability? Because it would seem to me to be in direct 
violation of those at the very least.

> I guess the challenge is to have the doctor see the child as a patient 
> "with some issues" rather than a "trisomy 13/18"

 And that is the real challenge - attitude.

> I think that is a very big challenge. The director of the NICU at our big 
> children's hospital told me, "it doesn't matter how mildly affected the 
> child seems to be. The trisomy is in every cell and any treatment, even a 
> palliative surgery, is futile."

I am not denying that it is a very big challenge but again to me in this 
situation it is one persons attitude, albeit a person with power which makes 
it dangerous, however its still attitude (and sadly probably the attitude of 
the majority) not policy or law.

I did write a couple of long emails before along this line but chose not to 
send them I will rethink that.

Karen 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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