Tuesday, 9 January 2007

This Brave New World

This has been knocking on a door in my head for a while now.
Ashley X

Reactions to the news of what Ashley's parents were able to decide to do, and have done.


The Thin Edge of the Wedge. Let this one pass unchallenged into accepted 'treatment' of people with impairments and it may open the flood gates that would threaten to swamp all crips. That is my first, self-orientated, reaction. And I know there are many tales, here and across the water, of what is quietly being done to people of all ages with physical impairments for reasons of 'management' in this 21st century.

Then the howl of NO NO NO, I feel for the child's situation now and as it matures (strike out 'grows'). That I feel as a Mother. Of an adult with impairments. That I fell as a physically impaired and sometimes cognitive dysfunctioning adult.

Then the recognition that, yes, care throughout the child's life will be expensive. I have adult (full grown and fiesty) friends who have profound physical impairments and, yes, they have access to funding to pay for the assistance they need (live in 24 hour practical help for all of life's necessities) so that as far as they want to be, they are not dis-abled from participating in society. Taxation on the working community pays for that funding. It is called 'civilisation'.

And recognition; that we do not know, cannot know at this stage, neither can the parents, that the child will or will not be sentient; have its own thoughts, feelings, desires, goals. How would anyone know that, now ?

So what I have arrived at to deal with the discomfort this situation has aroused, is to dream the dream of protection in law, something along the lines of:

A decision taken on a minor's rights should accommodate that young person's right to have a say in its future, in the future. Yes - the decision now to stunt the physical growth (and to disbud, to mutilate) has been granted to the parents, but what would have been the parents' choice if they had been granted that right ONLY IF that right had come with the legally enforceable right of the child in the future, in its future, to be able to take legal action on the parents' decision, if it so decides, with the right to receive compensation, if the courts agree, and for that child to have informed independent advocacy (preferably from lawyers with profound physical impairments) throughout its childhood, to enable it to make a supported choice whether or not to take such legal action in the future. Such a condition placed on the parents' rights over their child may have delivered a different outcome for the child than the mutilation it has suffered at the hands of its parents, and the medical and legal professions, as a result of its impairments.

Other Reactions:

A British Lawyer's: Fora, Lawyer

An American Lawyer's: Mark Siegel on The 19th Floor - scroll down to 'Frozen in Time'.

A Wheelchair Dancer's: Wheelchair Dancer

And Blue in Minnesota, a disabled feminist

And many other disabled bloggers, linked from those last three posts.

Update: 10 Jan 07 5pm
The http://www.drc.org.uk Disability Rights Commission have issued a http://www.drc.org.uk/newsroom/news_releases/2007/ashley_x_statement.aspx press release:

"...This is an unnecessary medical treatment, to deal with what is essentially a social problem: the poverty faced by families with disabled children in both the United States and Britain.

"...While this case is shocking, the real scandal is that developed countries are failing ... their citizens ..."

Read the full statement http://www.drc.org.uk/newsroom/news_releases/2007/ashley_x_statement.aspx

Thanks to Mark on The 19th Floor, for inspiring this post.


Blogger FSJL said...

To me, this whole affair has been a throwback to the period from the mid-nineteenth to the mid-twentieth centuries when kooky theories about eugenics, sanity, 'feeble-mindedness' and so on led to involuntary sterilisation for a large number of people. This could occur for reasons as mundane as normal sexual development (in a case I read of where a mother had her son castrated to stop him masturbating) to the desire to prevent 'inferior' people from breeding.

Tuesday, 16 January 2007 at 01:13:00 GMT  

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