Shocked and upset

No, no, no, I’m not done ranting yet for today at all!

The world shocks and upset me.

And by ‘shocks and upsets me’, I mean things like this.

Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life. Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.

“Dad is frequently the one that lifts her from one place to the other, so if she gets bigger that becomes much more difficult, as they get older it becomes more difficult. At that point in time they would be forced to consider using a mechanical lift, which is much more impersonal.”

“Ashley has no need for her uterus since she will not be bearing children,” they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it. The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said. The removal of the girl’s breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.

The parents deny, of course, that Ashley’s treatment (and there’s been a lot of it) is for their benefit, but I can’t seem to believe that: she’s been through numerous irreversible operations so that her parents wouldn’t find it as difficult to care for her. Sure, it’s all under the guise of ensuring Ashley’s well-being, but such spurious arguments as, ‘we removed her breast buds to avoid sexual abuse’ only serve to heighten my suspicions. When does such a grave concern ever even become relevant in one’s mind, and why would one feel that such invasive surgery is the only option?! (And let’s not even get started on where they got the notion that being a victim of sexual abuse is somehow highly correlated with having breasts!) And as a woman, I can assure both of them that one’s breasts are very darned important to us ladies, and are worth the odd bit of discomfort when lying down! They’re your BREASTS, gawdammit!!! And so what if they have to consider using a mechanical lift!? I wonder if Ashley would prefer to have to use a mechanical lift to get around, or to have everything about her being and person altered just so that daddy could still lift her? Much more impersonal, my arse!

I’m not a parent, and I hope that I’m never faced with such issues, but at the moment I can’t understand what gives these parents the right to halt their daughter’s natural progress in such an extreme fashion? I never, ever use this expression (mostly because I’m not sure about the existance of a deity) but seriously: who said they could play God?

The BBC discussion page on this (most of which disagrees with me, but anyway).

— —

Edit #1: a Comment is Free page on this issue. Unfortunately, it seems to have descended into name-calling as is too often the case on CiF but it might be worth the read.

Edit #2: there is further discussion on this issue on this post.

Edit #3: here’s another Comment is Free discussion page.

Edit #4: a further piece on Comment is Free. I’m not sure I’ve seen an issue get such attention in a long time. And proper order.

Just keeping everything up to date…

16 responses to “Shocked and upset

  1. I’m shocked that the doctors involved in this case haven’t refused to perform the surgeries on the girl. She may be disabled but the parents’ actions have sort of dehumanised her – Ashley is now a ‘shell’ of their daughter, arrested at the age of eight.

  2. I have to admit to swithering on this one, the girl has the mental age of a 6 month old she apparently has no awareness that she even has the possibility of breasts never mind that they might be important to her. She currently cannot hold her toys and this will never change although she could live for many decades.

    I don’t know enough to get into a massive discussion but I have to say I was swithering on it.

  3. Oh I know. I was only using that as an example of how they’ve ‘interfered’ with her. She might not be aware of it, but I can’t help but feel that it’s still important.

    It’s a really tough debate.

  4. I have to say I’m erring towards the parents judgement on this one, parents make health decisions all the time about their children, I don’t see this as being some landmark case or a slippery slope, I think her human rights to live as distressed free and comfortable life as possible is being respected as much as they can be in this situation. I have to admit my instinctive reaction was ‘oh that’s terrible’ but the more I thought about it the more I found I couldn’t locate what was SO terrible and wrong about it, I read some interesting posts on comment is free about how people are regularly ‘fiddled with’ to allow food and medication the best entry into the body to maintain life in a struggle free way, doing this helps both both the patient and the parents and is that so wrong?

  5. No, I see that Kris, and I can see how one would be conflicted about it. I just feel that these procedures are so invasive and irreversible and that they have turned their daughter into almost a ‘nothing’ person. They seem to have removed everything about her identity and her individulaity and I can’t understand this.

    Plus, it’s still my opinion that it wasn’t really selfless and that it was more for them than for Ashley.

  6. I don’t know, does having an operation to pin back the hereditory sticky out ears also permanently remove a persons identity or individuality, are you simply a product of your change through puberty? Is keeping her body more close to the mental age that she will continue to have not make more biological/societal sense? Hare lips on babies are often operated on to make it easier for the parent to breast feed and/or bottle feed because for several months after birth it can be difficult to feed but once this period is survived the person can live biologically very well without needing the operation but traditionally the hare lip is operated on for societal reasons/attractiveness.

    So many massive questions…. could go on all day but I’m not getting any closer to a definitive answer or even a defintive view for myself….

  7. I find what the parents did to this poor girl to be perverse. What these parents have forgotten is parenting is not what is convenient for them but what is best for the child. This mutilation was not done to serve the best interest of the child and instead has shown that the parents really only look at her as an inconvenience and not a child worthy of the love and support a “normal child” would be given.

  8. I would have thought if they were THAT uncaring and self serving then they wouldn’t be planning a life of caring for their daughter in their home, many people don’t. After 9 years of caring for their daughter I’d suggest that they are best placed to know how best to make her as comfortable as possible.

  9. “I’m not a parent, and I hope that I’m never faced with such issues, but at the moment I can’t understand what gives these parents the right to halt their daughter’s natural progress in such an extreme fashion? I never, ever use this expression (mostly because I’m not sure about the existance of a deity) but seriously: who said they could play God?”

    I believe these few thoughts alone disqualify you from having an informed opinion. I AM a parent of a child with sever disabilities. I would challenge you to walk a day in our shoes…how about just a few hours? To accuse the parents of allowing this procedure done for their benefit? That is an absurd statement. If that is the case then the parents should’ve just aborted the child and life would’ve been a WHOLE lot easier.

    Theses are parents who have seen their beloved child suffer seizures, multiple operations, missed holidays due to the hospitalizations, daily medical treatments that most people would be exhausted to perform one day much less a lifetime. They see the human being underneath it all. Those of you who sit in judgement see the disabled person.

    We do have one thing in common. I too question God on a daily basis. In the difficult times I wonder why He gave us this child. When my child smiles at me I just thank Him for the gift of being around one of His Angels.

  10. I have only a shred of understanding for Ashley’s parents. Sure, maybe she’ll live a little easier this way, but facing challenges is part of being human, for her and her parents. And who knows what advances will come about in her lifetime that could improve her mentally and physically, and yet she is forevermore trapped in a 9-year-old’s body and sterilized, eugenics-style, simply because they didn’t want her to suffer the mildness of menstruation (unlike every other woman in the world between ages 12 and 60!). Her breasts were removed for mere convenience, and her appendix was removed “just in case.” This is nothing short of child abuse.

    For more comments, please visit my blog post on this:
    http://angrylabrat.blogspot.com/2007/01/forever-young.html

    .

  11. The more common solution is to eventually leave the child in the hands of people who
    don’t care for her like a parent would a child. The child is then treated like a patient. Most attendents are kind, but not as kind as the average parent would be. There are also people involved in health care who shouldn’t be. It’s frightening to know that someone may hurt your child and he or she will never be able to tell you.

    Many parents, even those who love their disabled child very much, are forced to institutionalize their kids when they become unable to care for them. The decision to do so, often the last resort for parents, would be a drastic change for a child. Try to imagine yourself in the child’s situation, if the people who fed/clothed/washed/changed you every day went away, and you were in a place with disinterested strangers who took care if your basic need, but no longer sang to you, hugged or kissed you. Do you think that would be more jarring, or do you think she’s going to be thinking “Why aren’t I developing breasts and growing taller? And what the hell happened to my appendix?”

    Anyone who feels energized by this topic should use that energy to volunteer in a home for disabled children or look into being a respite care provider. If you’re really excited by it, there’s lots of kids with mild to severe disabilities who are looking for adoptive parents.

  12. Hi Tender,

    Happy New year. And well done for being “talent- spotted.”

    I totally agree with you that it’s a very difficult topic but I’m encouraged that you are open to debate about it.

    I personally think the parents and doctors must have done a lot of soul searching to come to their decision and trust them and their doctors to be doing what they think is right. They are the ones in possession of all the facts.

    I also think the parents are very courageous to have publicly rasied the issue by posting about it.

    As someone who had to cope very briefly with having a severely disabled child I wonder what I would have done in their position.

    I think so much more needs to be done for parents and children in situations like this. As a society we’re not very good about it.

    All the best to you.

    Keep up the good work.

  13. Kris: re. your last comment.

    I don’t know, does having an operation to pin back the hereditory sticky out ears also permanently remove a persons identity or individuality, are you simply a product of your change through puberty?

    For me, there’s a difference between pinning someone’s ears back and removing someone’s breast buds or ovaries. The former would strike me as cosmetic, also. The same goes for hare-lips – they can be repaired easily and are not of any ‘use’ anyway. You’re right, though: it’s a very complex debate.

    — — — — —

    Bennie: thanks for your comment. I think that everyone, parents and non-parents alike, have the right to debate this. I appreciate the ‘walk a day in my shoes…’ argument but that’s not the issue for me. From a philosophical, ethical and moral perspective, I believe that Ashley’s parents were wrong, or at the very least ill-advised. Re. the argument that the parents, if uncaring, would have aborted their child, I would suggest that that is a rather spurious argument: they would have done so only if they knew what was wrong with Ashley, surely, and the difficultly they would have looking after her. Also, I don’t think it’s absurd to believe that Ashley’s parents weren’t being completely selfless; it’s certainly plausible. But it’s a very difficult area, and I’m sure now that this case has received such attention, these issues will continue to be debated. And that’s very important.

    In any case, I wish you and your family all the best.

  14. Angrylabrat: thank you also for your comment. I thought too about the advances that could come about for this condition, and they would all be too late for Ashley. I suppose the question is, ‘is it worth waiting for?’ There would be a horrible irony about it all.

    Grey: thanks for your comment. You make some good points, I think. I do wonder, though, what will happen to Ashley eventually. Presumably after her parents have gone, she will have to go into care anyway. The poor wee pet.

    Puddle: happy new year to you too!

    I personally think the parents and doctors must have done a lot of soul searching to come to their decision and trust them and their doctors to be doing what they think is right.

    I truly hope so, Puddle. This whole area is so unexplored and you’re right: our society is not supportive enough of people in such situations.

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