The scariest sentence I read today

The parents of a severely mentally-disabled girl defended their decision to use medical treatments
to keep her child sized for the rest of her life.

Here is more scary stuff, and it is scary whether or not you think this is justified. 

Addendum: Here is a picture.  Here is the parents’ treatment blog.  They write:

what most people thought, the decision to pursue the “Ashley Treatment”
was not a difficult one.  Ashley will be a lot more physically
comfortable free of menstrual cramps, free of the discomfort associated
with large and fully-developed breasts, and with a smaller, lighter
body that is better suited to constant lying down and is easier to be
moved around.


As scary as this! ;-(

After an initial shock I don't find this scary - it sounds like a reasonable thing to attempt, given the probable alternative (which I have observed when training and practicing as a physician).

I think this is one of the many situations in which we should assume that the parents are the best judge of their own childrens best interests, and should be _very_ cautious about condemnation or prohibition.

As a thought experiment, suppose that the same result (retention of child's body) could be achieved by parents without medical technological intervention or anyone else's knowledge - or if it was a part of the clinical syndrome that this mentally retarded child retained the body of a child.

I think under such circumstances, this outcome would probably be regarded as somewhat fortunate, and would probably not be regarded as a moral issue. Therefore we should welcome that technology may be able to make it happen.

I heard this story on NPR on the way in to work. I don't see what is scary about this in the least bit. The girl has the mind of 3 month old and is unable to do anything for herself. What would be good about letting her grow to full adult size?

When I initially heard of this I was shocked/horrified, but then when I read the parents' reasoning for why they're doing it I agreed with them.

I think this can be seen as alarming only in a "slippery slope" way. In other words, to what extent to parents "own" their children and therefore have the right to pervert or augment their physical development?

I'd agree with the consensus here, however, that this is an extraordinary case and though it may set a kind of precedent, it's the right thing for this family.

Perhaps the scariest part of this story (and many others like it) are the enormous social and financial resources being used to care for severely handicapped people.

In an earlier time this child would likely not have survived long after birth. Now, society dictates that parents must go to every and any extreme to prolong the live (such as it is) of a child with no prospects for a normal life. Scary indeed...

I too am curious as to what exactly Tyler finds "scary" in this. Troubling, challenging. But “scary?† There is the abortion parallel but I do not know TC to be a Christianist. Clearly this is a moral situation that can be argued many ways. As the parent of a now 17 year old with severe Cerebral Palsy who lives at home, I completely understand, not necessarily agreeing with, the parents' decision. Yes it does have a certain "Brave New World" quality but I'll go with Bruce Charlton above.

Suggestion for Tyler. If you are so deeply disturbed by the actions of these parents, think about what the implications would be of adopt ing Ashley yourself and taking care of her for the rest of her life. Oh and by the way, sounds like her life expectancy is much longer than yours. Got to plan for that. Going to have to seriously cut back on those dining out experiences. And trips ... well.

It's a drastic solution, but under the circumstances seems appropriate. It's clear from their blog that the parents reached the decision after very careful deliberation and weren't just looking for an easy way out.

Speaking as a former camp counselor for mentally disabled adults, I fully understand what the parents were concerned about. (You've never lived until you've lifted into bed a 250 lb man with CP who can only grunt his name loudly.)

Considering that I think we are closer these days to Mother Teresa's position above, I think this is allowable.

I do find this scary (in the sense of "troubling" or "alarming"). It's scary to me in the extent to which the parents have been able to interfere in the "normal" development of their daughter. Now, I certainly understand their reasons for doing this, and I accept that there's a strong possibility that this will make the daughter's life better. I wouldn't say this action was *necessarily* wrong. But we should consider whether we want parents to be free to do this without any process to help ensure that the daughter's rights are being served. Even though I don't doubt that the parents in this case were entirely well meaning, parents in this position are not entirely disinterested in deciding whether to keep their child small. Yes, it may ultimately be good for the child, but it also makes life a lot easier for the parents (and I would guess reduces what they have to pay for care going forward). Given (1) the size of the impact of the keep-small decision and (2) the parent's conflict of interest in making that decision, this would seem to be a good candidate for a representative procedure, such as is used when the adult children of a parent with dementia seek to obtain a guardianship over that parent.

According to a lawyer on the BBC at lunchtime, in the UK this decsiion would not have been taken without the child having independent representation, presumably appointed by the court. Even if you accept the validity of the parent's choice - and I'm not sure that I do - this seems appropriate. The parents are obviously involved, but the child still has independent rights - she is not owned.

There will always be difficult situations and people faced with difficult decisions. We should at least be able to agree that the tendency to legislate broadly based on these very specific situations is unfortunate and hope that it doesn't happen in this situation.

I certainly don't envy these parents, trying to do what they think is best for their child and their family and being judged by the entire world.

I found this scary the first time I read it, but after considering the arguments on both sides... I can't blame Ashley's parents for doing that.
They did what they thought was the best for their daughter, and in that were approved by an independent ethics group.
They want to give their daughter the opportunity to live among her family even when it will become hard for them, because they'll be older and less strong.
I believe they truly had their daughter's best interests at heart, and that they'll be able to give her a quality of life very few people in her state can ever find.

"Now, society dictates that parents must go to every and any extreme to prolong the live (such as it is) of a child with no prospects for a normal life. Scary indeed..."

Did you even read the article?

Society doesn't give a tinker's damn about this girl or those like her. Society is doing everything possible to make sure there are as few like her as possible, through genetic testing and "therapeutic" abortion. Her parents love her, and enjoy having her around even with her dramatic cognitive limitations. Our society worships intellect, and has forgotten that intellect is only a tiny portion of the rich tapestry of existence. . . Forgotten that intellect is a servant to our humanity, and come to conflate our humanity with our ability to quickly perform abstract operations on a standardized test. I write this as someone on the right side of the fourth sigma of the bell curve.

I strongly disagree with the parents' decision to care for her. They should abandon her to the state. Caring for her, whether big or small, will ruin there lives.

The "scary" part of this is that euthanasia should not only be legal in this severe of a case, but should be preferred solution.

She's not Terry Schiavo, she has the mind of a 3-month-old baby. As the parent of a 3-month-old baby, I can say that's substantial. Three-month-old babies are aware of their surroundings, can interact with others, and are capable of enjoyment.

Perhaps he means "scary" as in "weird and grotesque".

Or "scary" as in "terrified by facing the same scenario this child's parents do, and having to make decisions".

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