Tuesday, January 13, 2009

Editor's Comment: Disorder linked to high levels of testosterone in womb

Please also see previous post

I have to say, as somebody with a congenital disability (in other words I was born with a disability) - I still find the idea of screening during pregnancy a little worrying.

I understand that parents are concerned about their child and the must do all they can to make sure has the very best they can have, both in terms of health and quality of life. But I find it really troubling that if such screening was available in the sixties, I probably wouldn't be here.

I need to say before I go any further that if you are the parent of a severely disabled child, or you are expecting a child and you wondering whether or not you should go through the screening process, I have every sympathy with you. I do not wish to add to your worries.

However it does cause me genuine anguish that disability is seen as such an 'evil'.

About a year ago I saw on my local news a story about a couple with a severely disabled child. He was seven, and was unable to walk, dress himself or talk in an coherent way. His parents (understandably) felt under a great burden to provide constant care for him and were clearly struggling.

But I felt more sympathy for the little boy as his parents explained to the interviewer, how their lives has been blighted by having a disabled child and how they were relieved that it was likely that he wouldn't live much past the age of 12.

The boy was sitting there right with them!

I don't know how much he understood, but imagine how he felt.

While it is true that having a disability does mean that life is not always easy, (damn hard sometimes in fact), there seems to be a pervasive attitude of sadness and regret about it, like some wise old man sadly shaking his head and tutting quietly to himself, that frankly is just not helping.

I realise that this is very complex issue and I have made some rather sweeping statements, but if you would like to leave a comment please do, alternatively take a look at the forum that goes with my site, www.uhad2bthere.co.uk/swap-it.html or email your comments .....

George, editor

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