Friday, January 5, 2007

Girl "stunted' by parents, on purpose

Yesterday's reporting that a pair of parents decided to stunt their disabled nine-year old daughter's growth made me wonder just how much we have entered the "Brave New World" that Aldous Huxley wrote of in 1932. Simply stated, to make sure "Ashley" stays four foot five they had her "de-sexed" -- removing her breasts and uterus -- and giving her significant amounts of hormones. What's more bizarre is that the procedure was done by a children's hospital (this one in Seattle), which normally has a mandate to make the lives of children and their parents more manageable.

One could probably empathize with the parents' plight, but under normal circumstances the young woman would grow to a height of five foot six. And many if not most mentally and /or physically challenged persons enjoy sex as much as the rest of us. What possible purpose could be gained by keeping a child such as Ashley small forever? Are kids that dispensable?

Moreover, whatever happened to the principle of informed consent? Surely a child of that age, no matter how challenged, must be aware of what her parents want to do to her. The parents have asked people not to judge them, but who can't help but do so?

For me, this isn't so much an act of love as it is one of frustration. This reminds me so much about the case of Robert Latimer, who murdered his daughter Tracy. No doubt Tracy was in excruciating pain and the numerous surgeries must have absolutely overwhelmed the parents. But rather than putting her into long term care where Tracy might have received the palliative care she was entitled to, Robert took the coward's way out and poisoned her. She wasn't asked if she wanted to die, if her father had the state would have had no leg to stand on even if the killing was immoral. Robert made the decision for her -- or more accurately, for himself.

But the case of Ashley is in some ways worse. To make their lives easier, they have disabled their daughter even more. Moreover, they have taken away her womanhood so that if in the future by some unforeseen circumstance she is suddenly cured she will never have the life that a woman is entitled to. We freak out, and justifiably, at female "circumcision" of able bodied females, many of which are done by other misguided women. Doesn't Ashley have the same rights? Isn't she entitled to keep her breasts and her uterus? It's not like she has cancer which might otherwise necessitate a mastectomy or hysterectomy.

Kids are not an inconvenience. They are God's gift to us. We don't inherit the world from our parents but borrow it from our children. Having a child is one of the most solemn responsibilities we can take on -- part of the reason why I haven't had any yet because I haven't felt I was able to be a parent, until now. We just can't throw them away because they're a burden. We have a duty to ensure their well-being, no matter what condition they are in.

What I would do if I were in Ashley's parents' position? Honestly, I don't know -- but this is one option I would not consider, any more than euthanasia.

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5 comments:

s.b. said...

I don't think this situation is that simple nor do I believe you have all the medical facts correct with regards to her condition and the proceedures she underwent.

Every situation is unique. i don't believe a "cure" is any more possible in this girls life than it was for Terri Shiavo. i am not supporting or rejecting what her parents have chosen, but I think to equate it with female circumcision is rhetoric to say the least and malicious at worst.

Many woman have their breasts and uterus' removed. In fact, the denial of the medical community of woman to have their reproductive organs removed when their is a history of disease and they wish the proceedures for preventative emasure is more of a concern than the opposite.

Does this girl really need her period every month? Your a guy right? Please correct me if I'm wrong. As a young woman of reproductive age I have inquired myself about a radical hystorectomy with my physician to rid myself of this concern and the complicationsit causes. I can assure this girl and her careivers don't need this concern either.

Stunting her growth is more problematic. However many severely disabled people end up in confinement or restraints or on drugs if they are large and can't be controlled. Again I am not saying this is her problem. However these parents want to care for their daughter themselves for the rest of their lives,. that includes when they are old. She is IMOBILE!. HOw will they lift an move her, when she is 150-200 lbs and they are elderly. They won't and they can't.

They obviously love their daughter very much. So did Mr. Latimer I'm sure. You have no right to compare killing a child with wanting to provde for her care for the rest of her life themselves, first of all. Second of all, none of us can judge.

I am 100% sure that if this girl could choose having her period and being in an institution or being cared for by her loving parents for the rest of her life without her period, she would choose the latter. Actually more than 100%.

Don't be so quick to judge. i do however agree it is an ethical dilemna and each case is unique. With review of the individual case by a panel of physicians and psychologists, this proceedure should not be universally condemned but accepted as a possiblility for the best health and well being of the individual.

Christian said...

In all honesty, you should really do a little research before you post such insensitive and arrogant opinions.

This girl has the mind of a 3 month old baby. She cannot talk, she cannot walk, she has no motor control, in fact, she cannot even turn over without her parent's help. Her condition will NEVER improve.

The only love this poor girl receives is from her parents. Right now she is almost too big for her mother to pick her up. What happens when she is a full grown adult who can't even turn over? What she needs is a loving home. If she grows to adulthood, she will almost certainly be too big to manage for her parents alone. Just try changing the diapers of a full grown woman who thinks she is a baby, failing her arms and legs around with the strength of an adult.

Her parents desperately love her and want to take care of her for the rest of her life. You would condemn her to state group home. How dare you judge them? This must have been an agonizing decision for them. Before you start pontificating from your ivory tower, you should consider that you cannot possibly know what it was like for them.


The only love this poor girl recieves is from her parents. Right now she is almost too big for her mother to pick her up. What happens when she is a full grown adult who can't even turn over? What she needs is a loving home. If she grows to adulthood, she will almost certainly be too big to manage for her parents alone. Just try changing the diapers of a full grown woman who thinks she is a baby, failing her arms and legs around with the strength of an adult.

Her parents desparately love her and want to take care of her for the rest of her life. You would condem her to state group home. How dare you judge them? This must have been an agonizing decision for them. Before you start pontificating from you ivory tower, you should consider that you cannot possibly know what it was like for them.

kurichina said...

I found these treatments really disturbing, too. Even if she's disabled, doesn't she have a right to natural sexual development? Wheelchair Dancer has a great post about it.

Deblar said...

Most people discussing this issue, outside of this forum, are just plain silly or stupid. If you do not have a severely handicapped child, your opinion means very little to nothing at all. You can never know or understand.
Watched that twit Nancy Grace on CNN last night state that the "mutilation" of this child should never be allowed. Of course, Nancy did not offer to come by and help clean the unstoppable flow of blood which destroys the clothes of the child every month never mind the pain the child goes through. Then she pulled the old fake tears crap for the rights of the handicapped!? News is slow, no hurricanes or mass murderers on the lose, so lets go after these parents. No-one and I mean no-one has the right. No law broken. And please don't giive me the "moral" law crap unless you are in the exact same situation. The age old adage of comparing apples and oranges applies here big time. Parents of non-handicapped children are the apples, where the parents of the handicapped children are the oranges. Opinions not comparable or worth anything to us oranges. Previous poster said she should be given the same chance for sexual enjoyment? Are you kidding me??? I do have a severely Mentally handicapped little girl who is now 13. Let me tell you something pal, if she got pregnant, it would be rape not because she enjoys it, and the culprit would be feeling the effects of a Louisville Slugger upside his head from me, no question. Please don't give any of us this crap. You know nothing of what you are talking about, just like the other morons who respond in a "oh, thats so bad" tone.
We to will be going down the path of having the procedure performed to eliminate the menstural cycle. Our largest concern is from the dummies who feel they know what its like, because they "know someone who is handicapped". Please, give it a rest.
For us, it is going to be a stressful, frustrating ride because of the "apples" who will make our lives more difficult and state that we are "lazy, uncaring" people. And that helps us how??? Oh, and just for the record, we are not asking for anyones help. Just that people mind their own business.

BlastFurnace said...

I was definitely hoping to provoke comment, and I appreciate all the thoughtful comments I've received the last few days.

Two points.

First: No, I'm not a parent. Not yet, anyway. And maybe I can't truly understand what the parents are going through.

However, problems of this sort seem to run in my family, and when I was a kid I had several learning defects, all of which put together which drove my parents through the wall. Sure, it wasn't as bad as the case in question here (or as bad, for that matter, with some members of my extended family), but I was in major danger of getting left behind.

It was only through intensive therapy that I was able to work my way around them, because they can never be truly cured except through divine intervention. My development after that was mostly normal, but my parents continued to be overprotective after that, something I still somewhat resent to this day. I was truly smothered.

Are the prospects this woman will have a normal life next to nil? Sadly, that's the case. But it's not necessarily nil all together. There still might be a possibility God may give her a second chance.

That leads to point the second: Some of you have said that if someone tried to have sex with her, it'd be considered rape. And you're absolutely right -- because in her current state she would lack the ability to give informed consent. And I would favour strict legal sanctions against anyone who tried to take advantage of her or any other patient with a similar condition.

But say, just for the sake of argument, she is cured. Yes, her parents are entitled to some extent to having their burden lifted. But were she ever to become what society deems "normal," isn't she entitled to the same kind of normalcy?

Yes, I'm a guy. And I would have thought by now a way would have been invented to suspend (albeit indefinitely) a woman's period, not get rid of it all together.

My sense when it comes down to it all is that the decision was made because someone concluded there's no hope at all. And, call me crazy, but that goes against my basic sense of humanity.

And to those who say that I don't have the "right" to comment on this unless I have a kid with the same kind of situation ... actually, I do. I'm entitled to think out loud, and I'm entitled to my opinions as much as anyone's entitled to theirs. Given this stuff can in certain stimuli be inherited, I have to worry and think about what I would do when I have kids and one of them -- God forbid -- ended up in this state.

And as I said at the end of the original post, I honestly don't know what I'd do but given how I feel about life at this particular point in time, it's not something I'd consider. Others might see it as the only option and that's fine but it's not for me. Simple as that.