This Brave New World Part 2

My laptop crashed last Wednesday. It took until Friday afternoon to discover, with IBM's telephone help, that not only has it crashed, my whole operating system has been wiped. Clean.

Now I am sat in the local library. My wheelchair won't fit under the desk, so I am miles away from the keyboard, so this is short and unsophisticated.

I created a post - ' Brave New World' about the Ashley X news. FSJL commented, which my email account tells me has been posted onto the post. (?) Now I cannot find the post under that title or the comment.

In case some of you have read my BNW (part 1) I note that the New Scientist has commented along the same lines as I did - that Ashley should have independent informed professional legal advocacy throughout her life, for whatever HER needs are.

I hope the Goldfish is well and happy and moved safely - I look forward to catching up with everyone's blog as soon as.

Back to my CRASH:

It was a little odd. While I was online, BT Yahoo prompted me to download a Virus Doctor, which I did, first checking it was genuine and it seemed to be. Half an hour later Norton (supplied in the BT Yahoo package) told me it was not helpful (not the same as not safe) and asked me to uninstall it which I did. All seemed fine. I continued doing what I do best (talking via the keyboard) and switched off. Hours later, could not get back into my laptop. At all.
Hours, days, later I found someone at IBM who could explain - apparently something got in somewhere and wiped the operating system beyond the factory settings, so I could not even get into safe mode on the desk top to restore to a previous date prior to the crash.

As I am still waiting for IBM to replace the hard drive under warranty, there is no point doing anything more until they do that. Then I can reinstall all the stuff that was factory installed, and install the operating system, and restore to my last back up. I have asked IBM to hold on the hard drive until IBM have supplied a wireless cardbus adaptor, so that can be installed at the same time to check that it does not cause any vibration - which is where I started months ago.
IBM sent me a second hand 90 day warrantied wireless adapter, but charged me for a new one which has a year warranty, so that is subject to a formal complaint with Office of Fair Trading advice.

and on and on and on ...

and its still raining.

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.

Mine:

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.

The Elusive Dorset Dragon

Durdle Door, Lulworth Cove

This has been troubling me for some years. Like most visitors to the coast, whether grockles, incomers or indigenous Dorset people, I had assumed it was just sea erosion around some pushed up rock strata. Then I acquired an old print which showed me, for the first time, that what we had in our midst was evidence of magic, as practiced thousands of years ago, back in the mists of time.

What I now think has, obviously, happened, is that when the Blessed Time of the Goddess was coming to the end, the upstart magicians could not cope with Her Companion Animals continuining to roam around as if they owned the place, so they were magically encapsulated, first in chalk and then encased in rock. Over the millenia they became covered with natural deposits and their shapes became just another mound in the landscape. Some, such as Silbury Hill and the mounds at Badbury Rings, were used for other practices in following times, but this particular Dragon, in its magical encapsulation, became visible through coastal erosion.

This picture, although small, shows most of the Dragon's length, beginning at the right from his nose dipped in the sea, drinking or scooping up molluscs, along his arched neck, up the ridge of his back and continuining along the length of his spine, his tail buried under the sand in this idyllic little bay.

southwestcoastpath.com

I became convinced of my theory when I found the following photograph when trawling the web for some insight, evidence even. It is impossible to identify the person who is feeding the dragon, doubtless some anonymity was desired, but it was posted on a blog and is obviously the Dorset Dragon. It is good to know that Her Blessed Companion Animals are still recognised, and venerated, where they are found.

travelblog.org

The time of the magicians also came to an end. I think the figure cut into a chalk hillside, known as the Cerne Abbas Giant is their own attempt to ensure their prowess is not forgotten in following centuries.

POST SCRIPT EDIT: At the time of writing this I did not know of the Centre for Fortean Zoology

who, I believe, have reported on a Dorset Dragon skull.

Ring In The New

A New Year - so, what's New ? Not a lot. No disabled facilities adaptations, no progress with Social Services, no miracle cure for Tinnitus (I can live with the Meniere's dizzyness, the Lupus, the physical pain and restrictions - but Hell, I Wish The Tinnitus Would Desist - my very own private, no not those sleighbells ringing, just inside my head only I can hear them, no volume control bells ringing, singing, dinging).

Hope continues; not for the impossibility of good health, not for a Knight galloping up on a White Horse to save this lady from herself, not for wealth (perhaps just a bit more), but Hope for a continuance of the good fortune I have; a good place to live, in good surroundings, a good relationship with my independent daughter, good friends (quality not quantity), good music, good books, good blogs and good medical support.

A Happy New Year to All