[statecom-discuss] Ashley's Medical Treatment
gracegrnrnbw at aol.com
gracegrnrnbw at aol.com
Tue Jan 30 17:06:03 EST 2007
Adam wrote"
"
If anyone has not yet been to Ashley's parents' website, I highly recommend it.
Judging from the photographs and text, this is a child who is dearly loved and
well cared for:
http://ashleytreatment.spaces.live.com/"
Adam - this is actually not relevant - its is why I said the thing about being
abused by my mother - to this day, no one who knew her and witnessed everyday
interactions between us saw anything but that she loved me very much. Pushed on
it most will agree that she had no real boundaries between her and me and that seemed
not totally healthy to them, but they suspected abuse. and to her death bed she said
she loved me, that I was her whole life -
The issue is actually not about the quality of their love, which it is hard for those
close to people to judge, let alone through a website.
The issue is one of systemic social disregard and abuse - a web in which the parents
are also trapped (as any white person with a child of color will testify to in terms
of racism)- and it does have a systemic name, its called able-ism - the fundamental
tenet of which has sometimes been described as a belief that being "normal" is morally
superior etc.
as for not being able to breathe - that sounds awful. and yes, I agree we have poisoned
our planet to that extent- Hence why we are environmentalists, no?
-----Original Message-----
From: adam_artist at yahoo.com
To: statecom-discuss at green-rainbow.org
Sent: Tue, 30 Jan 2007 4:27 PM
Subject: Re: [statecom-discuss] Ashley's Medical Treatment
"For many decades sterilizing disabled folks was the norm, the law - and
sterilizing is a euphemism for hysterechtomies (I give up on spelling,
forgive me!) and other very invasive, life altering and often
life-shortening techniques. It was done to thousands. the legal
sanctioning of it ended only a few decades ago - and you can still get
court orders for it. The arguments for genital mutilation are ALL about
the well-being and future for the girls involved - for their social
acceptance, for their ability to marry and have a care-taker for the
rest of their lives - and opposing it is often described as impoing a
set of external values on others - as dominant and inappropriate."
Of course routine sterilization of people classified as "disabled" is
inexcusable (disabled in whose terms? - in some circumstances not too long ago
not having blond hair and blue eyes was a disability). That's what may make
Ashley's circumstances so difficult for the decision-makers (although her
parents say the decision was pretty straightforward) - what are the criteria for
assuming the authority to make decisions of what degree? I think what I'm
getting to is that this is not an instance of dealing with collective harms such
as racism (just imagine what motivations would be attributed to the medical
system had Ashley also been black), sexism, etc.
As for environmental vs. medical insults, I can tell you from experience, both
as a former holistic health practitioner and as a person with multiple allergies
and environmental sensitivites, that hardly being able to breathe when my lungs
shut down from exposure to some forms of air pollution is a far more visceral
experience than an appendectomy, which never felt life-threatening to me.
If anyone has not yet been to Ashley's parents' website, I highly recommend it.
Judging from the photographs and text, this is a child who is dearly loved and
well cared for:
http://ashleytreatment.spaces.live.com/
Adam
----- Original Message ----
From: "gracegrnrnbw at aol.com" <gracegrnrnbw at aol.com>
To: statecom-discuss at green-rainbow.org
Sent: Tuesday, January 30, 2007 3:00:43 PM
Subject: Re: [statecom-discuss] Ashley's Medical Treatment
Adam - of course that is what we are all about or we would not be doing this
work! I think that is also why we engage in these moral discussions - because it
is important to struggle with them.
I want to push back on two things you said - you questioned my analogy to
ritual genital mutilation. How long does something need to be done and how
broadly for it to be considered a social ritual? For many decades sterilizing
disabled folks was the norm, the law - and sterilizing is a euphemism for
hysterechtomies (I give up on spelling, forgive me!) and other very invasive,
life altering and often life-shortening techniques. It was done to thousands.
the legal sanctioning of it ended only a few decades ago - and you can still get
court orders for it. The arguments for genital mutilation are ALL about the
well-being and future for the girls involved - for their social acceptance, for
their ability to marry and have a care-taker for the rest of their lives - and
opposing it is often described as impoing a set of external values on others -
as dominant and inappropriate.
The other thing is comparing this to environmental chemical poisoning
(something only avoidable by not giving birth as this point) and junk food and
bad drugs. I want you to stop for a moment and compare the visceral experience
of an operation that removes your appendix and other large parts of your insides
with eating food that is not good for you.
Love, Grace
Oh, and the thing about genital mutilation is that it specifically lowers your
ability to experience sexual pleasure - so does killing your hormones. she has
lost potential for great pleasure as well as the potential for menstral cramps.
Not only are large breasts not genetically guaranteed, nor are painful periods
(I'll gather some witnesses if you want)
-----Original Message-----
From: adam_artist at yahoo.com
To: statecom-discuss at green-rainbow.org
Sent: Tue, 30 Jan 2007 12:57 PM
Subject: Re: [statecom-discuss] Ashley's Medical Treatment
Dear Grace -
I don't want to argue whether I missed your point (I didn't - or maybe I did) or
whether you missed my point (you did - or maybe you didn't) - but to my reading
you attacked the parents ("If there were plenty of help and services, *and the
parents really love Ashley*, they would not have done this"), as if they had no
defensible interests other than being Ashley's parents. I have no reason to
believe, from what I've read so far (which doesn't get into the hearts of the
parents or the practitioners), that there were any nefarious homicidal,
misogynist, or capitalist motivations - just parents in a difficult situation in
a problematic culture trying to do the best for their child, presumably in lieu
of dropping her on the doorstep of some charity where she would likely spend the
rest of her life abandoned by anyone who loved her. I don't see how the
parents' decision is contrary to Ashley's best interests. Would a
non-capitalist, non-industrial, non-empire society have
handled it differently? Quite likely. Better and more humanely? Perhaps.
Ashley doesn't live there.
Sure, we should have good social policy, and enough services to take care of
everyone's needs. But that's not the world we're currently living in, and that
is presumably not the desirable but hypothetical world that Ashley's parents
have to deal with. Our bodies are constantly mutilated by toxic chemicals, junk
food (or lack of any food), bad drugs and war - it's all bad social policy, to
say the least, and fixing it is, of course, what we're about. To imply that
such decisions as the kind that Ashley's parents made belongs in a category that
includes sexual abuse of children, ritual genital mutilation, or battering women
- or the crimes against humanity perpetrated by capitalist or any "-ist"
oligarchy - is, to me, a desertion of the realm of the rational and
compassionate.
Cheers,
Adam
P.S. - If doing something out of love is not at least an element in moral
measurement (assisted suicide comes to mind, for example), what is?
----- Original Message ----
From: "Gracegrnrnbw at aol.com" <Gracegrnrnbw at aol.com>
To: statecom-discuss at green-rainbow.org
Sent: Tuesday, January 30, 2007 11:59:46 AM
Subject: Re: [statecom-discuss] Ashley's Medical Treatment
Adam - actually I have offered lots of different analogies and information -
exactly because not analogy is perfect.
I think, however, that you exactly missed my point.
My point is that the parents' "options" are circumscribed by bad social
policy. Which is actually one the implication of your "hard choices"
paragraph.
And, fo course, that saying simply that parents do something "out of love" is
not a moral measure.
I suspect that part of the disagreement we (everyone engaging in this) is
whether we primarily identify with the parents or with Ashley.
I have yet to hear anyone attack the parents.
for instance, as activists with a systemic viewpoint, we don't generally
attack particular parents for carrying out the binding of their children's feet
when that was the tradition in China, or for genetal mutilation of girl children
in parts of Africa, or for the binding of young girls with corsets as was
done in the US so their chest bones warped and sometimes actually broke as they
grew into adulthood so they would have stylish narrow waists.
We generally recognize these as culturally sexist and oppressive traditions
and policies not so much that particular parents are "bad".
thanks, Grace
PS - isn't it interesting that so many of these practices are about women,
about making them sexually acceptable to those who will care for them and
include pretty serious, invasive physical procedures?
In a message dated 1/30/07 10:23:21 AM, adam_artist at yahoo.com writes:
> "If there were plenty of help and services, and the parents really love
> Ashley, they would not have done this."
>
> Grace, I don't see how you can make this remarkably presumptuous assumption
> ("really love Ashley"). Perhaps, among the many divisions in the world, is
> that of those who are parents and those who are not. Parents make these
> decisions, potentially life-changing, every day in essence if not in degree
(e.g.,
> to vaccinate or not, how long to breast feed, whether to undergo medical
> procedures, what school to go to, whom it's OK to play with and where, how
much
> TV to watch if any, when it's OK for child to walk/bike/travel by
> her/himself, or drive the car, or eat certain foods) because children arrive
at their
> ability to make decisions at different time, often unpredictably from child to
> child - and frequently caregivers must make decisions with far-ranging
> consequences on behalf of a child who may simply and absolutely be incapable
of
> doing so.
>
> Granted that there is a continuum (a "slippery slope" or a ragged one) along
> which some people are capable of making decisions, some are allowed to make
> decisions by those who decide who's allowed to make decisions, some are not
> allowed to make decisions, and some who simply cannot. Who falls into which
> category depends on many factors, including politics, racial and gender bias,
> medical status, age, social transgressions ("crime"), results on
> "standardized" tests, wealth, and undoubtedly many others. Frequently the
decisions are
> deplorable, and cast deep shame over our past and present actions.
> Occasionally the decisions are enlightened. But such decisions are usually
fraught
> with doubt and error among the most well-intentioned people.
>
> We're basing this discussion about Ashley almost entirely on hearsay
> information, but assuming that her capacity as a three-month-old is correct,
her
> caretakers have very personal and difficult decisions to make, and
consequences
> to live with. We are in no position to judge whether their decisions benefit
> Ashley or themselves or her siblings or not. As parents, they will be
> caregivers for the rest of their lives, which will be more or less consumed
with
> Ashley's needs. They too are entitled to consideration.
>
> Where do we draw the line? Surely there is a difference between sexual
> abuse of a child and medical intervention with the intention of benefitting
> affected people. But the eugenics movement also claimed that sterilizing poor
> mountain people without their consent was with the intention of various
> benefits, including "best interests" of their victims. It is truly a
difficult and
> ongoing discussion, but to claim that there are only absolutes and no lines to
> be drawn (or that we're the chosen few to draw them) makes no sense to me.
>
> Adam
>
>
>
> ----- Original Message ----
> From: "gracegrnrnbw at aol.com" <gracegrnrnbw at aol.com>
> To: statecom-discuss at green-rainbow.org
> Sent: Monday, January 29, 2007 10:28:44 PM
> Subject: Re: [statecom-discuss] Ashley's Medical Treatment
>
> Jeff- some specifics - disabled folks have been sterilized for a long time
> until pretty recently - you don't see why what was done to Ashley is
> sterilization? that is specifically what it was and that is a thread through
all of
> these articles.
>
> the fact that there is a history of discrimination means that those of us
> who are able-bodied have been generally shut out of the experience of
> differently abled - and carry an inbred sense of superiority - so us thinking
we can
> making decisions for those we have been taught to experience as different from
> and less than us is sinply an expression of that same superiority - it means
> we are not in a position to be objective.
>
> I included one of the these because it talks not about just the history of
> but present time oppression - there is no distance to the slippery slope we
> are already on it and trying to claw our way off of it in the right direction.
>
> and I am not sure what you mean by contesting? We are not talking about a
> law suit, we are talking about calling on the larger players to take
> responsiblity for setting this situation up and letting it happen. If there
were plenty
> of help and services, and the parents really love Ashley, they would not
> have done this. That means the restructuring of services that would have lead
to
> a different situation is a responsibility that falls on all of us....
>
> Love, grace
>
> -----Original Message-----
> From: jturner at alum.rpi.edu
> To: statecom-discuss at green-rainbow.org
> Sent: Mon, 29 Jan 2007 2:47 PM
> Subject: Re: [statecom-discuss] Ashley's Medical Treatment
>
> >Merelice- while Martina's voice is important, I encourage anyone who
> wants to
> >back her or present helpful background to do so - here are three
> articles I
> >found informative and I encourage others to read (in no particular
> order):
> >
> >
> >http://www.bazelon.org/issues/disabilityrights/incourt/lane/blanchefisc
> her.htm
>
> There's a history of discrimination against the disabled, no doubt (off
> hand,
> didn't the euphemism "differently abled" ever take off, even in this
> community?). I don't see how it relates to the particular case of Ashley
> and
> her parents.
>
> >http://www.zmag.org/ZMag/articles/march02hubbard-newman.htm
>
> Again, what is the relevance? Ashley wasn't aborted, she's wanted by her
> family. She is not going to be euthanized for her disability. On the
> flip side of
> "Yuppie Eugenics" are the recent stories of deaf parents (and little
> people
> parents) choosing to have similar children. But it's still not Ashley's
> situation.
>
> >http://oracknows.blogspot.com/2005/10/eugenics-and-involuntary-euthanas
> ia.html
>
> There's a big difference between preferring a child-size three-month-old
> to a
> full-grown adult-size three-month-old and killing someone off. Nobody is
> arguing that Ashley should be killed, and I think the slippery slope is
> a long
> way off.
>
> I do not like the idea of being involved in contesting the medical
> decisions a
> family makes for a child they seem to genuinely care about.
>
> --Jeff
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