Like anyone with a modicum of compassion and humanity I am moved by the tragedy of the Ashley X story. I think of my own children and how I would cope.

And, whilst unsure about the ethics regarding such aggressive medical and surgical interventions as high-dose oestrogen therapy, hysterectomy and breast-bud removal, I cannot help but be respectful of her parents’ apparent pragmatism.

I have visited her father’s website, however, and I have to say that I find it extremely odd. The saccharine “Pillow Angel” sobriquet infantilises Ashley and suggests the sinister proposition that eternally small and cuddle-some disabled people are more acceptable (and perhaps less troublesome and easier on the eye) than ugly grown-up ones. 

Were I in this man’s position, I doubt that I could find enough faith in current medical opinion to accept entirely, as he seems to have done, the hopelessness of my child’s condition; I feel strongly that I would want to cling on to any (be it ever so slight) possibility that she might in some way develop beyond the “Pillow Angel” stage. Such a desire, I believe, arises out of my nature as a human being. 

“Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctors call her condition ‘static encephalopathy of unknown etiology’…and one that will not improve.” (my italics)

Everything that has been done to Ashley is legitimised by the contention that the primary purpose is to increase her quality of life. The ethics committee that sanctioned the treatment reached its decision based on the medical opinion that she would not develop beyond the mental age of three months.

But the combined might of the medical establishment “could not determine a diagnosis or cause”.

If they can’t determine a cause how can they say with certainty that the condition will not, even marginally, improve? Such a prognosis is no more than a speculation. The assumption that because she has not changed so far she never will is not one I find 100% reliable. It’s a theory not a fact.

And who is to say that some medical advance in Ashley’s lifetime won’t make it possible for her to live a more “normal” adult life?

There are more questions of this nature but it’s pointless to ask them because it’s too late now, isn’t it?

http://ashleytreatment.spaces.live.com/blog/

http://www.guardian.co.uk/medicine/story/0,,1983339,00.html.

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