[lit-ideas] Re: Ethics - Frozen in time: the disabled nine-year-old girl ...

  • From: Ursula Stange <Ursula@xxxxxxxxxx>
  • To: lit-ideas@xxxxxxxxxxxxx
  • Date: Thu, 25 Jan 2007 12:51:53 -0500

Hi Julie, you don't remember the parents names because they were never identified. I typed 'ashley stunted growth and got lots of news sites. I was a bit surprised that no one else commented on this story at the time -- Alex had asked the original question. Here is her paren't website...

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

Bread is easy. My son has taken over most of the cooking and baking (I get to wash the dishes...). His bread is better than mine. The secret is in the temperature and the TLC. He's playing with poolish now. I think it's googleable...
Best,
Ursula

JimKandJulieB@xxxxxxx wrote:

When I read the story I had very much the same reactions. I couldn't figure out why all the hype and furor. I'm interested -- do you still have a link to the parents' web-site? I've lost track of their names for googling purposes. I have never ever, ever had success with bread rising. What's the secret??? I bought a bread machine. It takes care of the rising thing for me. Julie Krueger

========Original Message========
Subj: *[lit-ideas] Re: Ethics - Frozen in time: the disabled nine-year-old girl who will remain a child*
Date:   1/4/2007 9:03:28 P.M. Central Standard Time
From:   Ursula@xxxxxxxxxx <mailto:Ursula@xxxxxxxxxx>
To:     lit-ideas@xxxxxxxxxxxxx <mailto:lit-ideas@xxxxxxxxxxxxx>
Sent on:

An interestingly manipulative title.  Her mental age is already frozen
in time.   Why get hung up on the fact that her body will also not
mature?   Stunting her body will not hamper her 'growth' any more than
her damaged brain has already.

I have been to the parents' website and have found their arguments
convincing.   I particularly found some of the emotional comments left
by others thought provoking.   One woman wrote of her 6 ft son with the
mind of an 18 month old (those terrible two's, remember) and how
difficult it was (for him and for her) not to be able to hold and
comfort (and restrain) him in a way that parents of 18 month olds take
for granted.   Ashley will remain small enough to hold and comfort and
rock and carry.   I can't help but agree that that will improve her
quality of life.  The fact that there is a gray moral area between her
case and cases of less disabled children where parents may also wish to
make life-altering decisions for their children is no reason to oppose
this decision.
Some of the objectors have raised the specter of reopening the door to
enforced sterilization. This, too, seems irrelevant to Ashley's case. The doctors have said that her mental age is 3 months. Leaving her
reproductive capabilities intact can add nothing to her life or her
dignity or her possibilities.
It's also a question of where the 'self' lies.   The outside world sees
the 'self' from the outside.  They see the body.   And the medical
interference with the natural growth of that is somehow seen as
horrendous.   Her parents are the ones who know her the best.  They
have, perhaps, seen past the body.  And they've decided that the
three-month old mind they've come to love does not belong in an adult's
body, could not cope with adult emotions and adult physical changes,
needs protection from fear and confusion.
If we insist that her quality of life or freedom or dignity is somehow
lessened by these decisions about her body, mustn't we entertain the
thought that every woman who cannot have children is somehow incomplete,
that every size-challenged person is somehow undignified.   Or is it
just the fact that she didn't make these decisions herself?  Are her
parents supposed to wait until she understands the question?

Ashley will have to be carried everywhere she goes for the rest of her
life.  She will get carried a lot more if she's small.   That's a huge
plus -- huge enough to compensate for the minuses (if there are any).
I can't see into her parents' motivations, of course, but even if they
made these decisions for their own convenience and peace of mind, Ashley
will still benefit.
That's what I think tonight, at any rate.  Other thinking still to come...

Ursula
watching her bread rise in North Bay
--------------------------------------
Alex Jorgensen wrote:

> I would interested in what you think about this. It always amazes me
> when supposed understandings of descency are brought to question - how
> often so much seems, I wonder, taken with little consideration for the
> solemn (and how issues of freedoms, rights, often lead us to, well,
> selfishness).
>
> http://www.guardian.co.uk/usa/story/0,,1982370,00.html
>
> Frozen in time: the disabled nine-year-old girl who will remain a
> child all her life
> Ed Pilkington in New York
> Thursday January 4, 2007
> The Guardian


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