surgery raises ethical questions re retarded girl

I don't want to wade too deeply into this well. I understand (or at least I think I do) the parents' motivation and, certainly, Ashley is entitled to be held and have human contact as much as possible.

Keeping her small certainly seems the best way to do that but, at the same time, it seems she's been permanently infantilized. Now, I'm well aware that her capabilities aren't going to go beyond an infant stage. And, of course, giving her a hysterectomy means she wouldn't be saddled with a pregnancy if abused (this happens and it's horrible). I'm all for that, all on that page.

But there is a level of infantilizing, still. I thought about an earlier comment -- I think it was from flushd and it may have been on a different topic -- re the removal of breast tissue. Without a period and with probably pretty limited nutritional options, I don't imagine that Ashley is going to become a D cup any time soon. So that got me to thinking of the infantilizing aspect of it all.

She's small. She's childlike. She's cute. She's cooing and playful (I hope). But she's not going to be an actual child forever. And, somewhere in there, all the hiding and manipulating and surgery and concealment are going to give up that information. Is it better or acceptable or is it heartbreaking, to keep her small, childlike, cute, etc. but also wrinkled and with grey hair? Or does the slippery slope lead to Botox and Miss Clairol, too?

I do not blame the parents. And, it's been said above, that some of this behavior seems driven by a desire or need to do all of the caregiving. That is loving and noble and unselfish but eventually it won't be possible, no matter how small Ashley is. At some point, her parents will become elderly. Or sick. Or disabled themselves -- what is it -- something like a quarter of all adults will become disabled at some point? A parent's heart attack will change everything. Or a stroke. Or chemo.

And, eventually, Mom and Dad just simply won't exist any more. I'm sure that must be a big worry -- what to do, how to provide as well as possible, for the inevitable after parental life care?

I have no answers for this, just some troubling thoughts, I suppose.

I see heaps of television ads for kids charities. I've NEVER seen one specifically aimed at handicapped adults.

Might be, different here.

From a comment in today's The Observer: If only right-to-lifers cared as much about the living

This is certainly something I can agree with from the article you linked:

I keep envisioning a future where the disabled are deliberately kept little... Modern medicine's inclined to fix one medical problem with adrug then correct the side effects with another drug. It's not so far a jump to correct things surgically, is it? The low pay caregivers earn creates high turnover in professional caregivers. It might be more attractive to CNAs to care for lighter weight patients... It's unsettling is what it is to think about... Rather reminds me of those bonzai kitties of urban legend fame... Unfortunately Ashley X is a real person, not an urban legend...

Budget cuts and the bottom line decide policy at care homes to some degree, and the decisions tend to be made for the greater good of the whole establishment. Ashley would probably not get the same level of care in such a home as she gets now in her parents home and care. It's all very sad; I think the article Walter linked called the situation unsettling. And while I can understand why her parents might make the choices they did, I would hope that most people would not make those choices. And if they did, not post that such choices were not at all difficult. Of course such choices are difficult!

I don't know anything by own experiences from how disabled persons are looked in the USA, neither if it's done by professionals or by relatives/family.

Since I've knowledge - now for nearly 40 years - about the situation (of both 'caretaker sites') here in Germany, I think, if a disabled person is in professional care, it's better for her/his self-determination.

If it's about pampering her/him, relatives taking care might be better.


At least here in Germany, disabled like more to do what they want and what what others decide they have to want.


The terrible thing is: you can't turn back times and change what has been done years before.

And unfortunately, I think, we will hear much more alike: embryos made to order from "the world's first human embryo bank".

I clicked on the link without reading what you'd quoted from it, WH, and copied out the same passage myself. So true.




As a sideline, something I do find truly horrifying, vis-a-vis the "embryo bank" notion, is that people will go to great extremes to have their "own" child when so many languish in foster homes, many of them doomed to miserable futures. When there are so many children worldwide, full-stop. It seems the height of selfishness to me to spend tens of thousands of dollars to make a child from scratch when there are so many others who need homes.