The "Ashely Treatment" or what the fuck is a "Pillow Angel"?

Music you want to listen to while reading this:
There surely can only bo no music to this topic

I believe most of you have come across Ashely in one way or the other over the past view days: BBC, Guardian and god knows who else have been writing about this 9 year old, strongly disabled girl, whose parent's, their her doctors and medical 'advisers' have devised the so-called "Ashley Treatment" to improve the girl's quality of live.

"Ashley is a 9 year old who lives in the Western United States. Her case has sparked a huge medical ethics debate having to do with rare medical conditions and parent's medical decision making ability for a child.
Ashley was born with a rare condition of the brain called static encephalopathy. What does this mean? The best way I've seen it described is a type of permanent brain damage. This type of condition is associated with a lot of disabilities like mental retardation, cerebral palsy, autism, and other similar conditions. It's been reported that she currently has the mental capacity of a three month old baby.
Ashley's parents, like other parents, were concerned about how they would care for a special needs child like this. But, unlike other parents, they took an unprecedented step to ask her Seattle doctors to perform what was described as "growth-attenuated" treatment.
Essentially, this type of treatment, prevents physical growth and keeps Ashley in her physical child-like state. Her parents made the argument that Ashley could be more easily cared for in this state. Ashley could be moved easily from place to place and she'll have a better opportunity to interact with other family members.
Who approved this radical treatment? Well, this was reviewed and approved by the hospital ethics committee before the treatments were done - including hysterectomy, removal of breast buds, and high does of estrogen to stunt her growth."

Sorry, couldn't be bothered to summarize it myself, so this is from Doctor Anonymous.
More more can be found on parent's blog

Now honestly, I am not really interested in this particular child's fate, nor am I in the position to comment or form a true opinion, but I think this sparks a very valid and important discussion on a very important issue in general. So please assume all thoughts below just incited, but not necessarily commenting on this specific case…

I think my chain of thoughts are best understood by explaining the different motions I went through after having heard/read about it:

First I was like "wow, how extreme". Think about it, what they do to this human being, how intrusive a treatment! They neuter a human being, keep it small and light through a mix of operations and hormone therapy. In doing so they show how depraved by creating an abomination. Well I didn't really think that, it was more on an emotional level, but I think that captures it. Or maybe it was a mix of sym/empathy with the little being and disgust about those actions.

Then - getting back into rational mode - I was more like "how can you", you do simply not have the right to do these things. At that point, I hadn't drawn the reference to how we neuter cats, how we cut dogs's ears and pigs' tails but somehow it seems as if for certain creatures we have the right to inflict certain drastic measures for "their own good". Or wasn't this what they told the tomcat before his operation?
Now then again we also do kill animals for food, fur OR as a matter of mercy and compassion.
Ok, I don't want to go down that route at all, except one thought: what is the determinant? The ability to speak for yourself, mental abilities, self awareness, or is it just power of the inflictors? No matter what we say, and loving to eat a stake from time to time I deceive myself into believing it is about the level of self-awareness that makes pain and death less horrible, but not fooling myself, I feel it is solely about power…

So got it I thought the bastards just do it for themselves. The parents, so that they have an easy live, the doctors to have some fun and publications. But lets take a step back: Can I not believe that the parents acted in the best interest of their daughter, actually really improving her quality of life: Yes it is correct, she will never grow up to have children, it is unlikely to nil that treatment for her condition will be found and even if, in say 10 or 20 years, how could this revert her mental condition at that point, keeping in mind that the main synaptical formations happen in the earliest stages of life.
Being like a flower, well she seems to grasp happiness, pain and sadness, but from the descriptions seems to have less self awareness than say the cat downstairs, and definitively less reactive capabilities (psychologically and physically) than that furry being.
So yes, she is easier handled as light weight, she wont have bed-sores, and believe me I have seen those on patients, and you do want to prevent those.

So this is it then, was it the right decision then?
Well I believe partially yes. Of course we do have all those religious fanatics out there saying we should not interfere with nature, leave nature its own course. Oh, fuck off. Then we shouldn't go to the dentist, shouldn't treat broken limbs, shouldn't take antibiotics. Shouldn't also farm, fuck, move even?

And Ashley's parents could have just done what a lot of parent's would have done - and noone not in the same situation should judge on that - namely drop her into some kind of institution: done. Dealt with.

But they didn't. How altruistic, how generous.
And for some strange reason, this is what makes me weary.
It's a mixture of things they do/did and how they talk about the little girl. What the fuck is a "Pillow Angel"? Really!
To me it massively smells like frustrated parent's (sure they are) last grasp to delude themselves of having a normal live. It tastes like desperation and the utterly selfish to drive to possess.
It feels as if the parents were compensating on the expenses of their daughter. Munchausen By Proxy comes to mind somehow…

So does this mean I agree with the treatment in general, but not necessarily in specific cases, that is if ill motivated? Well lets take it a step further, lets think about radical solutions:
Even visibly neutering her body, keeping her childlike, being so concerned about sexual abuse (didn't they say she will always be cared for by her family)? Is this just American primal fear that abuse and political incorrectness is everywhere? Removing certain organs because she might have problems with them later sounds good in the first moment, but then again, why not cut her arms off? She cant use them anyway. Then dope her up on H and make her really happy…
Where is the point to stop?

Eugenics anyone?
I am really pro-euthanasia in general, but how about people who cant consent for themselves. Well then we are back at the discussion above about the borderline between humans and animals. To the latter we have decided that we can do as much as we like - more or less - so wouldn't it be more merciful to actually…
I don't know and I am happy to not have to make such decisions, but I am pretty concerned that a precedence is created that will help (other) selfish parents to go on ego-wanking on such basis.
Actually the Swiss artist H.R. Giger who worked with Dali and Jodoriwski on Dune, has created the Alien and more important lots of deeply Freudian and disturbing images and sculptures has created this some years ago. Does this capture the above discourses essence?

I believe that what Giger's art is all about is the trauma of birth, so I believe his artwork is less about control than about protection? - thinking about it, there seems to be a weired fascination with control over children: .

Let's be honest, we all know how self-delusional people can be. Especially when it comes to having or not having children (here). And if something goes wrong even worse. Now then lets all get into self control mode, and raise our easy to feed, easy to tend for "Pillow Angels", breed our own portable Bbonsai Kittens.

PS
On a small side note: You might have realized that this is not the place for political correctness or enraged discussions about principles. So let me tell just mention, that although I generally agree with the writeress of this blog I also want to stress again that I can just laugh and shake my head about why some frustrated women are always trying to subvert everything they can to their course. Why the fuck is this a feminist issue? What if it was a boy? You are not seriously saying this wouldn't have happened to a boy? Grow up, and see this as what it is, a pharmacological solution for a social failure - the fact that American society does not do what it should to help severely disabled children and their families says Arthur Caplan, PhD, director of the Center for Bioethics at the University of Pennsylvania.

PPS
What does strike me strange her, and that just on a side note, is that the treatment has started in 2004 and there has been going on a massive discussion in the medical community for years, so slightly surprised that the media are NOW getting so excited about it and then suddenly everyone else...
I believe it is as with every other news, it is not about it being actual, important or interesting, just about being found and then being marketed correctly...
has everyone actually gone through the pain of really looking into whether this is actually true, or just a big scam? now I know they quote medical journals etc, but has anyone actually bothered checking whether this research exists? I havent... as I said I am more interested in the discussion than the actual case.