Ouch! Talkpermalink
She Will Always Be A Child
-
The parents of a nine-year-old girl who will never become an adult because of controversial treatment have defended their care for her.
Ashley X has a severe brain impairment known as static encephalopathy, meaning she cannot walk, talk, keep her head up in bed or swallow food.
Three years ago, when Ashley began to display early signs of puberty, her parents instructed doctors to remove her uterus, appendix and still-forming breasts.
She was then treated with high doses of oestrogen to stunt her growth.
www.wrx.zen.co.uk/br... -
She should be removed from their "care" and they and the doctor who carried out the procedures prosecuted.
This is a reply to this message.
-
What a strange case.
My initail thoughts are that it is very scary to think of your child growing up especially if they have learing difficulties or will be dependent on others when you, as a mother, can't be there.
The other point is all the unneccessary surgery this child is having which can't be good for general health, especially if she is not very mobile.
I don't know all the facts and I am happy to be told otherwise but it seems the parents are being allowed to manifest their fears for the childs future in an extream way.
Goodness knows what will happen to my little boy in the future when he grows up but I have to give him the chance to see for himselfThis is a reply to this message.
-
I think this is pretty sickening - not because of this particular child's situation, but because they have just set a precedent for carers being able to sculpt disabled people into something more convenient for them. Surely care should be about helping the disabled person to be as equal and able as possible? Yes, this one person won't get better, but I don't think it's fair to subject her to surgery she won't understand (and all surgery carries risk - hysterectomy is quite a serious procedure) and it's certainly worrying in case it starts a trend in other cases which aren't so clear cut.
I'm also appalled that the parents aren't prepared to be named, but they let their daughter's photo and name be splashed in the media. If they are proud of what they've done they should stand up and speak openly about it.This is a reply to this message.
-
I'm not sure what I think about this one. It's one of those profound dilemmas about the severely learning disabled - you can never ask them what they think.
I don't know if this is more for the parents' benefit than the child though - if she grew up having periods and not understanding them, and grew so big that her parents had to put her in a home, would that make her any better off?
Plenty of people with disabilities elect to have unnecessary surgery to correct things that are more about 'conforming' than about their actual medical needs, such as growth hormone treatment or having a squint corrected cosmetically, cochlear implants or titanium rods inserted into limbs to hold prosthetics in place.
If this girl is to have any kind of meaningful equality it will surely be equality with a small child, not adult equality, as she will never be capable of the independent decision making needed to function as an adult. I'm not sure it's such a bad idea to help her to live more comfortably as a child.This is a reply to this message.
-
Flash, I don't understand why they've included pictures of the siblings on their blog either - we've been told that placing black strips on a picture does not anonymise the subject (as anyone living nearby could probably work out who the family are).
As far as the ethics go, still trying to make up my mind
This is a reply to this message.
-
<<Plenty of Disabled people elect to have unnecessary surgery to correct things that are more about 'conforming' than about their actual medical needs, such as growth hormone treatment or having a squint corrected cosmetically, cochlear implants or titanium rods inserted into limbs to hold prosthetics in place.>>
How is that the same as this surgical assault?
<<If this girl is to have any kind of meaningful equality it will surely be equality with a small child, not adult equality, as she will never be capable of the independent decision making needed to function as an adult. I'm not sure it's such a bad idea to help her to live more comfortably as a child.>>
You scare me.
I'm disturbed that you can't see the fundamental wrongness of this, David. Even if she is unable to make decisions for herself, she has the right not to be surgically infantilised.This is a reply to this message.
-
I heard a bit more about this on the radio and the more I hear the worse it seems. For example why did they have to remove her breasts? Early onset puberty can be regulated to some extent by hormone treatment.
It seems that they just don't want her to grow up and menstruation seems to be a major issue for them. Surely after many years of caring for a disabled child they can't be squeamish. Is it some kind of modesty/puritanical thing where its OK to do intimate care for a child but not for a woman.
Aparently the 'treatment ' was approved by an ethics committee which begs the question; how disabled does a child have to be for this to be done?
I hope this is a one off caseThis is a reply to this message.
-
Quite. Why can't they put her on the pill or give her norplant so she doesn't have periods, rather than this? They'll be pumping her full of drugs anyway, so why not consider that?
They have said she had an appendectomy because she can't convey pain if she gets appendicitis. Well, she won't be able to convey pain if she gets fractures from osteoporosis either.
This all makes me go "ugh".This is a reply to this message.
-
Nobody ever grows so big that they 'have to be placed in a home'. Nobody. Ever. That's what hoists and bath-lifts and slider boards and adjustable-height beds and changing benches are for. Capisce?
They will not stop her from becoming a woman, just from looking like one. I feel so sorry for this little girl and the woman she will be for what she will experience living in a family who seem determined to keep her as a baby forever.
One of their arguments was that the women in the family tended to have quite big boobs and they wanted to avoid that for her as it might make her uncomfortable - but strewth, that's hardly grounds for a radical mastectomy in a 9 year old, is it?
I know many women, including one very very close friend, with severe or profound intellectual impairments who menstruate and none of them, to my knowledge, experience any significant problems from it whatsoever. If you're already in pads full-time then adding a bit of blood to the usual contents thereof is irrelevant. If you get a tummyache once a month, as many of us do, you indicate it and have a painkiller.
If her future size and weight is a concern then why not amputate her legs, too? As argued with her breasts and uterus, it's not as if she's ever going to use them.This is a reply to this message.
-
<<Aparently the 'treatment ' was approved by an ethics committee which begs the question; how disabled does a child have to be for this to be done?>>
It also begs the question: were there any Disabled people on this "ethics" committee?
Nothing ABOUT us WITHOUT us, I say!
This is a reply to this message.
-
Just looked on the BBC News page on Have Your Say. There's a discussion thread there about this story too, and I couldn't find a single comment against the parents actions.
Interesting seeing the contrast of opinions between the Ouch readers and others.
have a look and see what you think.... I was shocked.This is a reply to this message.
-
Well, I left my comments earlier today and have been asked to go on World Service later... so you can be sure that a disabled person's perspective will be put, then at least.
The problem as I see it is that if the parents won't be identified, we can only ever have a debate about them and not WITH them.This is a reply to this message.
-
This is absolutely disgusting, and one of the nastiest things i can imagine being done to a person. I read about it in Tom Shakespeare's article as something that doctors were *suggesting* as something that ought to be done, but was not aware that it actually *had been* done...
With all the furore about "female circumcision" (which is actually, in most cases, done consensually), you would think that there would be equal or greater horror at this far greater violation - but, no, it seems to be accepted because it's done by the powerful, "worthy" and "respectable" British medical system rather than by poor, foreign people...
David, your post betrays severe ignorance to me. You should read Amanda Baggs's BallastExistenz blog before you make sweeping pronouncements like "the severely learning disabled - you can never ask them what they think" or "If this girl is to have any kind of meaningful equality it will surely be equality with a small child, not adult equality, as she will never be capable of the independent decision making needed to function as an adult".
People with even the most supposedly "severe" and "profound" learning disabilities - people who have been assumed to have no "intelligence" or means of communicating their feelings at all, people who have been explicitly told that they were nothing more than an "empty shell", have been facilitated to find methods of communication with which they have incredibly clearly expressed themselves, and absolutely proven themselves to be adults, with all the feelings that adults have, including sexuality and including the same desire that any adult has to have control and autonomy over their own bodies and lives.
Amanda Baggs was one such, as was Cal Montgomery (who writes for Ragged Edge magazine), and both of them produce some of the most stunningly clear, powerful and intelligent writing about disability and the disability rights movement that i have ever seen. There are dozens more examples to be found on the web - Sharisa Kochmeister, Hero Joy Washington, Elana Connor are the first few names to come to mind, but Baggs has many more on one of her blog links pages...
This girl could easily actually have a genius level IQ - not that it matters if she doesn't, because her rights would still be exactly the same. Equality and full adulthood aren't just for *some* disabled people, they're for ALL of us.This is a reply to this message.
-
Incidentally, the link in the top post doesn't go to the actual news story, just to a page with a list of UK news websites...
The actual news story (on the BBC) is here: news.bbc.co.uk/1/hi/...This is a reply to this message.
-
I am enraged by this. I can't believe in the 21st century that to manipulate someone without their consent has been deemed ethical.
I have commented on the "have your say" section. I think others from here should do so too.
RobinThis is a reply to this message.
-
I am absolutely stunned at this. I read Tom Shakespeare's article about this and was horrified at that, I'm stunned someone has actually gone and done it.
And it brings home one of my fears too - that one day I might have control over my life taken away from me and I jsut don't want that.
This is a reply to this message.
-
Well she is handicapped, and before you shout at me that was the word used by a consultant on the BBC a few minutes ago.
Another doctor stated many people who are seen as having a learning disability will grow up to have an understanding of what they want or need, sadly this child will never have the choice.This is a reply to this message.
-
I've added mine - but they aren't going to like it.
This just goes to show that there is an intellectual gap in understanding of Disability by the average non-disabled person. This is the worst kind of paternalism - coupled with unquestioning acceptance of eugenics.This is a reply to this message.
-
Flash, dearest - pray tell, when are you going to be on The World Service?
This is a reply to this message.
Live community panel
Vote
Vote
© MMIX