Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

That quote was a response to being told that what they were doing was grotesque. I don't think it's fair to take the quote on its own, out of context, and start using it to draw conclusions about how the parents do or don't feel.

There are some views quoted in the Guardian piece.

I realise that the issue of extreme, profound and multiple disability like Ashley's probably doesn't have a particularly brilliant solution. But I don't know if this level of medical intervention is justifiable.

Well, Dull, I don't see where I used 'evil' and 'uncaring', so keep your hair on, fgs.

What's there to 'debate', someone else's decision? Or, in general, a parent's control over their profoundly disabled child's life?

If you want to, go ahead.

All I said is that I don't see how the former issue is debatable, b/c I'm not them, thank f*ck, I'm not in their situation, and I don't know them personally.

I think it's not just an issue of 'those are her parents, they know what's right'. Parents have made different decisions for disabled children all the time, and those decisions are inevitably influenced by their own feelings, actually.

The whole issue of sterilisation on its own has been a hugely hot potato in learning disability circles!

It's also a precendent. It's a social issue, it affects us all because it says something about the society we live in.

I understand why they have done it, and it means they can continue to care for thier daughter themselves - and I assume at some point they received medical advice on the effects of the treatment.

But the following paragraph:

Dr Douglas Diekema from the University of Washington in Seattle, who was on the ethics committee that gave the go-ahead for Ashley's treatment, told the BBC that the panel agreed "because the parents convinced us it was in fact in this little girl's best interests".

Bothers me as it seems the parents are dictating to medical proffesion as to what they want doing. Surely the medical proffesion can assess the situation and make a judgement themselves.

I agree, MI, but at the Guardian article also pointed out, the care system in the US is very different from here, too, a signficant factor in the parents' decisions as well.

And also, to what level should parents' feelings be considered in making long-term decisions regarding the health of a permanently and profoundly physically and mentally disabled child for whom they, the parents, are the primary caregiver?

Just saying 'I just detect their distaste is the underlying reason for their decision. Like why do they need to remove her breast buds? ' or along the lines of 'isn't that a strange thing to say' isn't a debate, it's a judgement call.

We must also put the case in the context of healthcare in the US and how it operates, something many outside the US are ignorant of entirely or buy into stereotypes about.

In order for this girl to receive treatment at state expense, her parents would need to put her in state custody.

Yes, this would indeed make sexual abuse a distinct possibility.

The American medical establishment doesn't have much of a moral compass, being dictated by what patients' health insurance will cover and the powerful drug companies.

What is the extent of the child's cognitive impairment? In the Times it was suggested that it was very profound, but the reporting has tended to focus on physical problems. Does that make any difference to the debate do you think? I have to be honest - I find it hard to take any position on this one. What a dreadful, dreadful situation to face.

I got the impression that the drs were not simply going along with what the parents wanted but thought it was a reasonable position to take in the very diff circs of this case. Drs are not all powerful beings who should dictate to parents. In most cases the parents are the best people to judge what is right for their child.

At the end of the day it is not the drs who are looking after this girl 24/7, it is the parents. The main issues seem to be lifting and carrying, she is less likely to get bed sores and will be able to continue going to trips out and be hugged and cuddled.

Fortunately I am not in position of the parents but I do have a ds with SN and want to do everything I can to ensure that he leads a fufilling life. I am sure the parents here are the same and if these procedures help them enjoy some sort of family life then I am favour of it. I really can't understand why there is such a big fuss about this.

NOt sure if theya re right, but they are clearly doing the thing they feel is the best for her in her circumstances, with the aim of continuing to be able to provide that love for as longa s they can. Whether you agree or disagree (and it ahs been through the ethics committee I note, who will have all the info) I certainly don't think they deserve criticism- emapthy certainly.

'but it isn't as if they have done anything to damage the quality of their daughters life, ' Blu I agree.

I used to work with severely disabled adults, the biggest risk of sexual abuse wasn't from the emplyees but other patient. Not intentionally either- as one patient put it when tackled about stroking another inappropriately 'well she likes it'. Well yes she did, she'd have liked full intercourse too, unfortunately however she had the intellectual capacity of an 18 kmonth old baby and as such couldnt be able to make opinions on something so important (neihter could he, btw- he was no sex offender)

I do have to say that this doesn?t sit well with me, and yes, I actually do think that it is a debatable issue as what one parent does for a profoundly disabled child could potentially set a horrible precedent for treatment of such disabled children in the future.

I don?t think anyone can really comment on the individuals here, as this article is merely a snapshot of what their daily lives are, although don?t know if the blog gives a more detailed insight into what they go through on a daily basis. But I do think that questions need to be asked as to whether it is really right to play god over anyone?s life. I mean we?re not talking life-prolonging drugs here we?re talking radical treatment that will keep her a child so that it will be easier for her parents to manage her. Often debates have raged on here over whether it is right, for instance, to end the life of a severely disabled baby, and the general view is that we have no right to play god and decide which children live and which die, so what right do we have to decide that a child can essentially live but that she will have to be modified to do so?

If the situation was reversed and the doctors were recommending this treatment against the parents? wishes, there would be outcry on here, saying that the parents had the ultimate say and that it was not right to go to such radical lengths, but because it is the parents making the decisions people seem to have a different view.

I think it says a lot about disability actually, and it says a lot about peoples? inability to accept it in certain instances. There are many parents on here who have children with extremely severe disabilities, and the one thing that comes out in all discussions with these parents is that they ?wouldn?t change ds or dd for the world?. And that despite everything they have to go through on a daily basis.

I don't have a disbaled child and I can't imagine how hard it must be to make those sorts of descions. Of course they should be able to keep her. I think it sounds like they love her very much.

what I find "odd " though is the mention of sexual abuse. I mean you read about about it happening to babies. so how is keeping her a child going to keep her safe.
I feel for the parents but as a parent of a child who is severely disabled(not to that extent thank god) I think it is awful to do what they have done.

but wannabe i think the question (to me) is what real effect is it going to have in terms of her life? Fertility etc is such an emotive thing, but this girl is never going to have a baby or relationship. She's fortunate to have a mother atm, that might not be forever and I know a father who has to deal with his very severely disabled daughter's menstruation, and he feels that is something that affects their relationship and is an invasion of the basic levels of dignity that she has. Giving injections etc can of course prevent menstruation, but why is introducing chemicals better? Yet it is frequently used in care homes in this situation.

I don't think there is often a right or wrong in these situations- just a what gets the most epople through with the least suffering.

wannaBeWhateverIWannaBe thank you you put what I was thinking and so much better

I too felt very uneasy when I heard about this - not the prevention of periods so much etc, but the idea of "freezing" her as a child.

The thing is, until quite recently it was considered OK to refer to people with learning disabilities as 'children trapped in the bodies of adults'. This kind of radical surgery - because that's what it is - makes it possible to keep someone 'in a child's body' for life. I have to say I am finding it quite hard to contemplate.

I wonder how I will feel if one of my children wants gender reassignment surgery as an adult...

2shoes I see your pointa nd it is valid, but did you see my post below about when I worked in the care unit- removing secondary signs of puberty wouldn't protect her against perverts and paedo's its true, (not sure anything will more the pity) it might stop the fancying by other patients who are not predatory or anything, they just fancy someone because she's got a nice figure r whatever and don't have the capacity to understand the morals and ethics around it.

But the sexuality and expression of that sexuality by people with profound learning disabilities is a separate issue, isn't it?

MI i'm not sure its the same thing- if my kids want gender reassignment its my job as aprent to respect their ewishes which I hope will have been amde in a balanced way (that my opinion of my role obv), whereas this girls lacks the capacity to understand or decide

You make good points, Wannabe.

I am chilled by the context Expat quotes - that to have state support in the U.S she would need to be in state custody. I have seen parents on an American site about DS's leg making decisions about amputation or other surgery based on what can be supported long-term on their health insurance.

We do need to talk about priniciples, because our principles define what we are as a society or civilisation. The difficulty is that principles come under scrutiny and pressure in the context of individuals. So debate about the principle becomes hard without crossing into judgment. The idea that a human being needs to be 'tailored' in order to be able to be cared for does disturb me. LIkewise the apparant removal of her sexuality. And of course, removing her breasts and uterus won't prevent sexual abuse, only pregnancy. Which could be achieved through depo-provera implants, for e.g. In principle I am concerned that a human being can be subject to so much intervention without consent, horrified that the welfare system makes it even partially necessary (and it's hardly a doddle for parents in this country, either), and prepared to be open-minded about the pragmatics of this family's case, as I'm not them.