Flutterby™! : stunted growth for ease of care 2007-01-06 16:52:54.304463+00

stunted growth for ease of care

2007-01-06 16:52:54.304463+00 by Dan Lyke 10 comments

We've had Charlene's developmentally disabled brother with us this week, so this is one of those "makes me think on all sorts of practical levels" stories that's been floating around Parents keep mentally disabled daughter child-size for easier care. Girl has static encephalopathy, is never going to grow up to be functional, so they're stopping her growth at 4-foot-4 and 70 lbs and removing her uterus and such so she doesn't mature.

Which might bring up some interesting discussions about the value of life and humans as pets and what it means to be human... or we may all just stare at our shoes uncomfortably.

From an entry over at Sensible Erection, 'though Bill forwarded the NYT equivalent to the hiking list, too.

The big fact for me was that Ashley has a history on both sides of her family of (a) large breasts, (b) breast cancer, and (c) fibrocystic growth. Having a mother who is either unaware of or unable to communicate when she is in pain, I know how difficult it is for my elderly father to be sure she is in good health and not suffering from something; the same would be true for Ashley as she grows older.

I have a smidgen of history with the 'developmentally disabled'.. it's very hard to make judgement on the decisions made by the parents and caregivers, as long as it's not abusive. "Neutering" is a very common practice, dispite legal issues. It's all a matter of how much you stretch your personal belief systems. At the prognosis of having a baby for "life", I'd have issues with defining them as "human". What -would- I do? Thankfully, I don't have to find out.

I was listening to NPR on Friday and they had a report on this. The lead in to the story horrified me until I found out the particulars. This child will never mature, mentally, beyond a three year old. In her case I see stopping her from maturing physically beyond this state to be appropriate and possibly the kindest thing that could be done to care for her. Her case, to me, is clear-cut. With other disabled children it would be a clear-cut decision not to deny physical maturity to the child. Then there is the gray area. It's always the gray areas that will get you.

My question: In this era of HIPAA, why is this child identified in the news? The answer is the parents WANT this child identified and in the news. Note.... there's ZERO identification of this child in the original medical literature NOR in the Reuters story because that's standard for such things.

NOW, the child and her parents are thrust in the news because they CHOSE to blog and defend something that should be a personal and private decision and DID NOT have to be defended. They made a choice, a difficult choice, which they felt was best for their child and their family.

Perhaps I'm cynical, but I'm skeptical their motivation was strictly to aid those in similar situations. I'm sniffing the odor of a book deal, movie deal, or somesuch.

It could be a defensive move, some-one/group may have threatened to tell there story from another perspective. Unless you are one of the family/caregivers, waking up at 2am. crying "why me?!?" - what do we really know?

Even if it is for a book deal or movie deal I can't condemn them for that. This family may be of modest earning potential and are looking for ways to fund the care of their daughter.

Topspin: Where is Ashley identified with enough info for you to find her? I looked at the parent's website, and saw them identified only as Ashley's Mon & Dad. Only the child's first name is used. If they said "Ashley Smith of Elm street, St, Paul MN" you might have a point, but the vagueness seems to cover the territory. The other issue seems to be that this story was going to get out anyway, so they opted to give their side of things before they were labled as simply horrible people,

Petronius: I'll agree they don't publish their phone/address on the web, though I would suggest reporters ARE using the info they provided... masked pics of the family and procedure location info and approximate procedure dates... to search for her and her family. I wasn't suggesting they were making themselves a target for every schmoo with a net connection, but rather they were inviting publicity when there was no need.

They appear to have made some difficult, challenging decisions for the benefit of their daughter, but WHERE is the benefit for her in inviting massive publicity about her case? It was a private decision. It was made and the procedures have been performed. The case was somewhat unusual, was noted in a journal, found some professional and public discussion, and would have faded quickly from public discussion without their website.

Don't get me wrong. I'm NOT skeptical about their logic for having the procedure, nor am I suggesting they generated the procedure strictly for this publicity, but I AM skeptical that the web attention aids Ashley or her family in her care unless there's something in it for the family beyond reading thousands and thousands of emails and certainly having reporters search for the family based upon the pics and info they provided. That decision, unlike the decision for treatment, doesn't seem to add up to being helpful in her care, nor helpful for her family unless they are somehow seeing this as "a mission" or looking to maximize the publicity in some way. I will grant the "mission" angle may be true, but as I said..... I am cynical.

Stuff like this doesn't get into the news unless the parents want it to get into the news, and whether they're doing it for financial gain (taking care of a DD person is hard and expensive) or to raise some of the philosophical issues doesn't much matter to me. The course undertaken seems totally reasonable to me given the premises under which the parents, and society, is operating, and I'm interested in looking at those premises.

This one is an extreme case, the girl is human only in shared DNA and rough shape, but maybe that lets us look at some of the issues involved with a slightly clearer eye. There are lots of developmentally disabled people in this world who are about as functional as the assorted pets we keep around us, some of them less so, and I wonder, in our efforts to preserve human life at all costs, where we should draw the line of "human", or whether preserving said life is doing either us or them good. And any time we get close to that line, of course, we end up Godwinating the conversation pretty quickly.