Mum just cc’ed me on a letter she wrote to the nasty eye doctor… it’s great stuff. I am a very proud daughter! Thought I would post it here for all to share.

Dear Ian Kennedy
Three days ago my daughter Emily Walker and her partner Jan Wright brought their two year old son Archie to see you about a possible ‘wandering eye’. After the consultation they were very distressed and I thought it would be useful if I let you know why.

They found the language you were using to define Archie upsetting, such as calling him “a Downs” and making general statements about “Downs”. I guess we are all inclined to define people this way until we have some personal experience of our own. Having Archie in our family has taught us so much about the importance of not defining people by the conditions they happen to have. So we would only talk about a person ‘with down syndrome’ not ‘a Downs’. Just as you would talk about a person with a broken leg, not ‘a Broken-legged’. I think the girls also felt that you had decided children with down syndrome were not worth treating because ‘they’ wouldn’t keep ‘their’ glasses on and they were shocked to realise that they were possibly going to come up against this prejudice from the medical profession with Archie throughout his childhood. This is of concern to us all as we would not like his medical care to be compromised by a prejudice about his condition. In fact, the main challenge Archie and his parents have faced so far is the prejudice about his condition rather than the condition itself.

If you went to Archie’s Lifestart group you would see that, just like all other children, children with down syndrome are as different from each other as any other children – with widely different temperaments and different levels of physical and social skills. In fact their syndrome is one of the least interesting things about them. Archie is already recognisingwords and reading letters of the alphabet and he loves books. Like all children, it is vital that his sight is as good as it can be. You might like to find out about his school and other children like him at http://www.lifestart.org.au/ and about the Down Syndrome Association of NSW on http://www.dsansw.org.au/ and maybe share this with your colleagues.

I’m sure you didn’t intend to cause such distress to Archie’s parents, but it would be great if you could find the time to find out more about the syndrome so you are more positive next time a child with down syndrome requires your expertise.

(Just as an added note, Emily and Jan said they had to wait for an hour for their appointment with a 2 year old and a 5 month old and then had to wait in your office while you had a 15 minute private phone conversation, which was possibly not a good start to the consultation.)

Attached is a pic of Archie playing cricket last weekend. He’s going to need binocular vision for that!

Kind regards

Helen

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