Are these parents right to keep their disabled daughter a

[TheDullWitch]

Story here

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giddy1, your life over the last years will have given you life skills, and organisational abilities that Heads of Industry would weep to have. And resiliance and stenght of personality and determination, born out of necessity, but will give you amazing advantages over kids fresh from school.

giddy you have every reason to feel proud of your self

She wasn't operated on to prevent bedsores. She was given a short course of oestrogen to limit her growth - a treatment that has been around since the 1950s and all medical authorities (except poor ignorant Ganymede) accept to be safe.

Are you only 36 Giddy? YOu have lots of time to develop a career if you want one. You will have developed reserves of patience, determination, organisational powers and many other wonderful qualities. If you wanted you could go on to study. Please don't think it is too late. It most definitely isn't.

India Knight on this story in Sunday Times here

An interesting article you posted there, thanks Dullwitch, the writer sums up my thoughts too. She refers to it as nauseus I'd call it obscene.

Ashley isnt a baby, she isnt the family pet and she's certainly not a 'pillow angel'.

A few posters earlier have hinted that the motive of the parents may be somewhat different what they alledge, I too support that argument.

I find the whole thought of 'spaying' a 9 yr old girl, removing her breasts, and stunting her growth repulsive.

Candlestick, the writer is at pains to make it clear that she is not judging.

You, on the other hand, clearly are.

well, I have really tried with this but I simply cannot feel comfortable at all with what has been done to this child. Of course I sympathise with her and her parents but I cannot agree that such radical and invasive surgery and procedures is wholly right. I agree with India Knight actually - for once.

Maybe India Knight isn't being judgemental, she does however title her article 'The horrible truths about pillow angel' her words not mine.

India Knight's opinion has no more validity than yours or mine - sure she has a daughter with SN, but her little girl is not profoundly disabled.

Someone on this thread seemed to think that the views of disabled people were more valid than anyone else's. The insights they have gained from their conditions are not relevant to this case either because they are plainly in no way as severely disabled as Ashley. If they were they would never be capable of forming an opinion, let alone expressing one.

Mothers like India Knight may feel an especially visceral horror at the thought of such a procedure being carried out on their child but there is no question of that and her contribution just confuses the issue.

On the other hand I have great respect for the views of the carers of profoundly disabled children and adults who have posted on this thread. They can put the procedure into context and have really valuable insights. Thank you!

And India Knight also leaves out many of the points of view so very eloquently voiced earlier on this thread.
About the fatuousness of taking an ideal standpoint in a sickeningly un-ideal world.
About the possibility of your loved child receiving intimate care from unloving hands
About the enabling of cuddling.

"This story makes me feel nauseous. But if there?s one thing I?ve learnt through having a child with special needs, it is not to judge other people in a similar boat". Of course she feels nauseous, imagining this. But she also says she is not judging. Of course she feels nauseous. I felt nauseous deciding whether or not to allow my DS's leg to be amputated. I feel nauseous at the thought that I will sign a consent form for extreme invasive surgery on his short leg. I feel even more nauseous thinking about the possibility that I MIGHT sign a consent form to allow the growth plates on his perfectly strong healthy normal leg to be smashed to enable his legs to be of more equal length. But there isn't a way round any of that nausea. There is no potential 'social' solution, it's amechanical accident of birth. And the alternative also makes me feel nauseous: back and pelvic problems, constant pain etc etc.

But I feel nauseous and blind rage at the thought that in the real world, Jimjams may well sign a consent form which enables someone else to decide about vaccination or dress her handsome funny affectionate quirky son in horrible trousers.

there isn't a route luxurious enough to allow anyone in a situation like this NOT to feel nauseous (alongside the huge love and joy they feel for thier children, however disabled). But we can manage not to judge individual parents, can we not, candlesticks?

The views expressed by Ganymede and Bigird are important too - we must have views which question all our extreme decisions, and question how far society compels those decisions. We must have ethics committees to look at the wider picture of how we protect the vulnerable in our society.

But lets not decry individual parents making decisions which face them with nausea every damn way they look.

Fantastic post Blu.

She isn't 'pumped full of hormones' every day. She was given oestrogen over a period of time (I thought it was months but it was two years) and now it is finished and will never need to be done again. It is a treatment around since the 1950s with no known side-effects.
I think people who say parents should never make permanent decisions about their children or subject them to surgery are idiotic. Look at Blu's position.
I don't much like the term 'pillow angel' either, but, hey, they are Americans. I think that sort of thing is more popular over there. and they are religious.
This treatment went before an ethics committee of 40 different healthcare professionals (and, I assume, other professionals). The parents didn't just do it at home with a carving knife. It was one operation too. I think exaggeration does the argument no favours.
They may well have mixed motives - who knows - but Ashley's doctors had to agree the treatment and they were convinced it was in her interests.
Also, the parents did not use the word grotesque. That quote was misatributed to them.

The usual load of old arse from India Knight. Poorly written, poorly argued, woefully ill-informed - which should surprise no-one who has read any of her previous "work".

This thread contains a level of debate which far surpasses anything India Knight could ever aspire to in her wildest dreams.

Aloha, when you say growth attentuation has been around since the 50's without any reported problems that may be true, but it's not a straight forward comparison you make it out to be.

Unless I'm mistaken in the past the procedure has been carried out on people with their consent and to reduce in most cases abnormal growth to what would be more in keeping with a healthy adult height or sometimes minor reductions for cosmetic reasons. In other words it would be in the patients best interest.

In Ashley's case the situation is very different, in that growth attentuation has been done to effectively keep an other normal healthy body from acheiving its full size.

Admittedly there's nothing that can be done about patient consent in Ashley's case, but to say its a long established procedure and is safe is rather misleading.

I'd suspect no-one really knows what (if any) problems this may later cause but it's not unreasonable to assume it probably isnt a good idea to confine an adult in the body of a 9yr old.

No, that isn't at all what the treatment was for. It was used in healthy individuals - usually girls - who otherwise would simply have naturally grown very tall. In practise this probably meant around the 6ft plus mark. Or, as you put it, "effectively keep an other normal healthy body from acheiving its full size."
It was done for social reasons primarily, just as young children with bat ears have their ears pinned back for social reasons.
Girls with Turners Syndrome normally have short stature because their hormone surge of oestrogen is unopposed, so it has the same effect of limiting growth by speeding up the rate at which bones reach full maturity.
These girls have been studied into full adulthood and there have been no side effects found.
I see no evidence that Ashley is in any sense more confined in a 4'6" body than she would be in a 5'6" body. Quite the reverse, in fact.
And she's not 2'6". She will probably be about 4'5" or 4'6in. One of my best friends is 4'10" tall and in perfect health.

The parents cited bedsores as one of the justifications for 'the Ashley treatment', which includes surgery. They also cited the risk of sexual abuse, although that seems strange since abuse isn't limited to adults or people with large breasts. So that's two of the arguments which are, at best, questionable, given that there are plenty of other options for bedsore management, before you get onto the very complex debate about hormone treatment to keep Ashley small enough for her parents to handle, and care for.

Today's Guardian says other parents have contacted Ashley's doctors wanting the same treatment for their children. This case has set a worrying precedent.

And I don't see why the views of disabled people are somehow 'not relevant' as Upwind says. Surely everyone is entitled to an opinion? Thing is, once you set a precedent like this, it affects a far wider group of people than, perhaps, orginally intended. People with disabilties may feel thta it says something about society's attitudes to disability and the provision of social support, I imagine. I don't see that there's much point playing 'who is more disabled.'

Aloha, you've just admitted the in the past growth attenuation was perfomed largely on girls who would otherwise become unaturally tall, isnt that I exactly what I've just said ? You are finally agreeing ?

It wasnt generally done to make a person unnaturally small but more to keep them within what would be rocognised as 'normal' that is fundamentally different from Ashley's case.

You the say people with Turners syndrome tend to be small because a hormonal balance (similar to the one Ashley was given artificially) limits their growth. Thats almost like saying we have effectively given Ashley one of the symptoms of Turners syndrome.

Incidentally it may suprise you to learn people with Turners syndrome tend to suffer higher levels of osteoporitis and cardiovascular problems, just like someone said further down the thread.

Edam - I don't believe that disabled peoples' experience is relevant to this debate, their opinion is obviously just as valid as yours or mine.

The danger is that for some disabled people the issue is a political one to do with their rights rather than about what is best for this little girl and her family. They may feel that they would hate to have had such a procedure carried out - and to do such, without permission, on someone intelligent enough to be angry about the concept may indeed be a travesty but it is beside the point.

Even India Knight seemed incapable of perspective - she spends the first three paragraphs of her article referring to her experiences with her dd as though that gave her insight. Her toddler is already able to communicate with her and is still developing.

JimJams has explained, more eloquently than I ever could, why it is important that such treatments are considered on a case by case basis. Simple outrage - based on "it would not have been right for my child/me therefore this treatment should not be open to anyone" - is imo unreasonable. Simply because in this one very extreme case it seems to have been a practical and successful treatment.

Toastee - petite women were in fashion in the 50s and 60s. The oestrogen treatment was used on perfectly healthy girls who might have grown taller than average. At that time it was shown to have no other long term effects.

It was designed to make them more attractive to prospective husbands. Seems crazy now but not too long ago, wealthy chinese womens' feet were crushed for similar reasons and female genital mutilation is still the norm in some parts of the world. Even here in the UK celebrities routinely undergo cosmetic surgery.

Upwind, I cant believe what I've just read !!

Try saying to disabled rights groups that a disabled persons experience isn't relative to this case or that they may view it more to do with their human rights.

Isn't one of the central issues here about human rights !!!

Try it tomorrow, call the disabled rights commission and see what they have to say.

At the end of the day i dont think there is a single person who can really comment with any experiance on this situation.

The parents have done what they beleive to be the best they can for their child..is that not what we all do?

I doubt there is a single parent that could have us all agreeing they do it all perfectly, but they do what they feel is right.

That is what these parents have done and it is no ones business but theirs.

Unless they can show that this poor girl is being harmed in any way by her parents actions the workd should just keep their beaks out of what they know nothing of.

I went into ds1's school today and met up with parents. Some children in the school are like Ashely. The concensus was that it was extereme, but without knowing many more details about the case it was impossible to say that it wasn't in her interests. It may well have been in her interests.

The level of disability thing is relevant. The type of therapy I do with ds1 is hated and loathed by many adults with AS or high functioning autism. They think it is wrong because they think it is taking away a choice from him, they think I am trying to stop him being autistic. I'm not- I don't care how autistic he is, I would just like him to be able to live independently and choose what he does with his time. As they do- if he choses to collect pictures of telegrapph poles- fine by me. It is very difficult to talk to adults who have the level of autism that ds1 has- because many are non-verbal- but there are a few around who are willing to talk with parents. I have spoken to them, and consulted with them, and asked their opinion (their experiences being far more like ds1's) and they have all been in favour of what we do.

One told me not to allow the high functioning adults to guilt me into thinking I should celebrate his tics and OCD and the part of his autism that prevents him being able to do what he wants to do- because if I did then ds1's life would be "eaten up piece by piece" (her words).

Of course other disabled people are allowed an opinion on the case- but their experiences are no more relavent to Ashley's life experiences than ours.

Toastee, no, I'm afraid I'm not agreeing with you at all. These girls treated with oestrogen to reduce their eventual height weren't potentially 'unnaturally' tall in the slightest. They were absolutely 100% NATURALLY tall. You know, like Jodie Kidd, L'wren Scott (Mick Jagger's girlfriend, Venus Williams and even taller women. It was done for social reasons, and as I said, there have been no serious side-effects found.

"You say people with Turners syndrome tend to be small because a hormonal balance (similar to the one Ashley was given artificially) limits their growth. Thats almost like saying we have effectively given Ashley one of the symptoms of Turners syndrome."
No it isn't. Not at all. What actually happens with Turner Syndrome is that natural short stature is part of it. So to make the girls taller so they are more socially acceptable (this doesn't improve their health btw) they are given growth hormone, but to make them menstruate and grow breasts etc (which again is for social and psychological reasons, not for their physical health) they are given oestrogen, because they don't make it themselves. The oestrogen promotes bone maturity, so they stop growing earlier, so there is a problem in how to balance the contrary effects of growth hormone and oestrogen.

"Incidentally it may suprise you to learn people with Turners syndrome tend to suffer higher levels of osteoporitis and cardiovascular problems, just like someone said further down the thread."
No, it wouldn't surprise me at all, because it the LACK of oestrogen that causes these problems, not an excess of it! Oestrogen is fantastic for bones. Why else do you think osteoporosis (not osteoporitis, btw, the word which the person below used ) is more common after the menopause?
I think it's good to debate this, but tit seems to me the nature of her treatment (repeated surgeries, being pumped full of hormones every day forever) is exaggerated,
Also agree that nobody can stand up and say, 'I'm like Ashley and think this treatment is wrong', because if they and stand up and say the treatment is wrong, they aren't remotely like Ashley.
As far as I understand it, bedsores sound trivial but are actually a massive problem for immobile adults. They are hugely detrimental to quality of life, and even life-threatening.