284 3 mins 14 yrs

Wonder what your view is on the news that a mother has provoked an ethical row by getting the backing of doctors to remove her disabled daughter’s womb to improve the teenager’s "quality of life" in adulthood?  Alison Thorpe said her 15-year-old daughter Katie, who cannot walk or talk, and needs round the clock care, will suffer undue pain, confusion and indignity by the onset of womanhood. She wants surgeons to carry out a hysterectomy to save her daughter, who she says has no prospect of having a child, from the distress and inconvenience of menstruating. A consultant at her local hospital has taken up her cause and is seeking legal approval to carry out the procedure even though it is not medically needed.

Disabled rights groups were furious at the move. "It is really unacceptable that the for the first time in the UK that doctors want to remove a girl’s womb simply because of being disabled," said Simone Aspis of the United Kingdom’s Disabled Peoples Council."Katie like any other non disabled teenager has the right to grow up with her body in tact, and where she can have the same choice as anyone else to give birth to her own children. Katie’s human rights are being taken away and this is simply wrong."

So, where do you stand on this moral dilemma. My heart goes out to Alison and Katie – and I can see why the operation is being considered. Giving young Katie the best life possible is an understandable objwctive but then again, does this set a precedent which may have profound consequences. If we can get a girl’s womb removed even though there is no medical need for the procedure, what comes next? A life? I am open-minded on this one and await your thoughts…

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284 thoughts on “A MORAL DILEMMA…

  1. The mother is right. What is shocking people with this case is that the daughter cannot decide for herself, and perhaps it looks like its being done against her will. But this isn’t the first time someone has had surgery to put off future cases of ill health. Women who are prone to breast cancer and maybe have had cancer in one breast have had both removed because they know the likely hood of it spreading is high, so one op does all.

    Ehen these young women meet puberty it can throw a spanner into the works, for example some illnesses get worse with the onset of menstruation. Epilepsy can get worse – infact epilepsy can be controlled by the pill.

    There is a huge outcry now for people to live life as naturally as possible, and as normal as possible. But if help is needed and certain things can be avoided, then that is the kinder thing to do.

  2. David

    What people do not realise is sex happens among the disabled – particularly children like this one. They too have their feelings and sexual urges, and it is possible for them to get up to ‘yes tonight josephine’, which has consequences. Infact here in NI we have had social workers convicted of rape of disabled young women like this one. This woman has a choice. She can give the daughter the pill, but its not 100%. The pill brings its own problems. It can conflict with any drugs this child is taking.

    Then there is the indignity of menstration. This child cannot clean herself, change herself, cope with period pain, tiredness etc. But removing the womb won’t remove everything associated with menstration, but I understand completely what she is doing.

  3. ‘where do you stand on this moral dilemma’

    I dont and feel deeply uncomfortable seeing the question even raised. This is why it is for the family and those closest who love and care for her to decide and not us, the media. That this childs personal life is being picked over so openly and by everyone is astonishing.

    Her dignity is already lost.

    That the people who are closest and care most for her are being questioned in their obvious desire to lessen her suffering is an example of how low we have sunk.

  4. Alison,

    This isn’t the first time this has happened. What is different is that the identity of this child is out, thats the mothers fault-nobody elses. Unfortunately, not in this case but manyh others, the media is needed to highlight problems in order to get attention drawn and action taken. Take our recent media coverage of muckamore abbey and the situation there, or the young man with learning problems who waited TEN YEARS on a root canal being removed.

    When people can’t speak for themselves someone else needs to, but in this case blame those closest to the child. They allowed this to happen – no mistake.

  5. Typhoo – Thats because she is seeking legal approval. And why was she forced into this situation? As a result surprise surprise a righteously indignant group – in this case disabled groups – are chalking this up as a ‘social’ womb removal! Like non existent ‘social reason’ abortions theyve reduced a complex decision into nothing. I find this DEEPLY abhorrent. I shuddered when i read it on ATW. THIS IS NOT OUR MORAL DILEMMA. That they have had to seek publicity to redress what should be a very personal decision is already grotesque. That we get to sit here and JUDGE and JURE over this girls personal life as a MORAL dilemma is even more abhorrent. Who the hell are we?????? Im sick of this voyeuristic society that levels complex personal choices and issues into some kind of moral porn.

  6. No Alison, they could seek legal approval and not bring out the identity of the child. But let me say this, these issues are there – they need airing. Hiding them away like disabled children were once hiden away is not acceptable, but the child could have been protected from the media glare. That was down to the mother who acts not only as guardian, but as the childs legal representative.

    This outing was done for one reason – to show the disability – learning problems. If the young woman could decide for herself this wouldn’t be happening.

    Of course the mother needs the attention too, munchausen isn’t dead when we have women like this living through their disabled children.

  7. Let the date be marked….

    I agree wholeheartedly with Alison on this one. That the young lady has a short life expectancy should also be taken into consideration.

    All of the pompous spoutings of the likes of Simone Aspis of the United Kingdom’s Disabled Peoples Council, seem more concerned with how they feel about the matter, rather than any consideration for the girl or her family.

    Aspis spouts: "where she can have the same choice as anyone else to give birth to her own children".

    What is this woman drivelling about? – the girl has at the most optimistic guess, ten years life expectancy. Hardly a basis or timescale for the wisest of family planning decisions, and should she become pregnant, what are the chances that her condition will not be passed on to the child, and who will be expected to raise the infant thereafter, after all she cannot even care for herself!

    Let the Disabled Peoples Council stick to solving the more practical of disability problems, rather than dabbling in the pseudo ethical, where they seem to have little sense or expertise…

  8. Short life expectancy? Her life expectancy is the same as any other person. She doesn’t have a life threatening illness.

  9. Typhoo,

    Her doctor said on tv yesterday, that her life expectancy was not more than twentyfive years, ‘due to the severity of her condition’. As she is now fifteen, she has a short life expectancy.

    Cerebral palsy covers a large range of conditions, some far worse than others, such a decision should be solely that of her parents, with professional advice from her specialists.

    Like so many human disabilities, decisions have to be based on many factors, not least being the degree of the disability.

    I know a professor at London Uni. who suffers from CP, and doesn’t Stephen Hawkin, the astronomer suffer similarly?

  10. EY

    In part I agree. They told me my child would die in the womb, and that I should consider abortion. In those days that wasn’t the done thing. We went to the priest who was outraged. My husband and I were told our child would have no quality of life. That was 30 years ago. Quality of life is good, and a decision we’ve never regretted.

    Her mother is the person to make the decision alright. But she didn’t make this decision by herself. Someone planted that idea in her head.

  11. Typhoo,

    Nowhere, – that I could find on the Rowntree site does it mention Cerebral Palsy per se. In fact it seems to take great care not to mention any particular disability.

    I have no doubt that many disabled folk do live to a ripe old age, but in this case we are discussing Cerebral Palsy…

    Your link seems a bit disingenuous to me!

  12. Well then I’m being disingenious obviously and haven’t a clue what I’m talking about. The problems of disability obviously escape me….I’m talking out my arse. πŸ™‚

  13. Typhoo,

    That is not what I said…you provided a link to say that disabled folk live to 78. I agree with that, but we are talking specifics here, not generalities. Your link was – shall we say – misleading…:-)

    Although I am sure you do know what you are talking about, you are not the only one who has experience of disabilties and the folk who suffer from them.

    A pity Andrew isn’t around, we could ask his opinion, couldn’t we?

  14. Not really Ernest, I have a huge problem with people playing God. They can make an educated guess – but thats all it is, an educated guess, not a certainity.

    No I realise other folk suffer, but I’m speaking as a mother, agreeing with the one in Davids link..thats all. I think I’m qualified to do that.

  15. Ernest, as to life expectancy here is a link to CP.Perhaps a little less disingenious. πŸ™‚

    However, in most cases, persons with CP can expect to have a normal life expectancy; survival has been shown to be associated with the ability to ambulate, roll and self-feed

    http://en.wikipedia.org/wiki/Cerebral_palsy

  16. Typhoo,

    OK, we’ve kicked it around, changed subject, and finally we come back to the original discussion…

    So – do you agree, and from the info we have, that – in this case – there is a legimate case for a hysterectomy, or not?

    As with Broon, a one word answer will do….

  17. Legitimate case = yes. Outing the childs identity = no.

    Sorry for more than one word. πŸ™‚

  18. Typhoo – I dont have time to read all the comments at the moment so sorry of this goes back to the start. When it is a legal issue every single legal case along these lines makes it into the limelight. I agree with the need to highlight it from a legal perspective. I refuse to be drawn into judging her or the mother, whose life is directly consumed by her daughters. Im reminded of the Baby Charlotte case where various people cynically banged on about that baby, to suit their ‘moral’ position, pushing THEIR agenda, only for the parents to collapse under the strain and then unable to cope with her severe handicaps, abandon the baby into care. I simply do not view this as *our* moral dilemma to push and shove and make a call on. And the fact that we already judging the mothers call, attitude and reasons for me at least underlines this. Each decision in such a situation is taken on advice, with information and facts to hand and in the end through a very personal choice. Legally that should be all that is required. It is not ours to judge a complex and personal situation.

  19. Alison,

    I hear what you say. I’m not for hiding moral issues affecting disability away in a closet though. Moral issues affect disabled as it does the able bodied.

    If the parents of baby charlotte cracked under media pressure, then they were going to crack in any case. Better to have done it then than await some other catastrophie arising from the pressure of caring- if you can’t hack it, don’t do it.

  20. One thing ill add to this is the mother has highlighted the total bankruptcy of the ‘social ills’ position by making her daughters case so public. It demonstrates the complexities in each personal situation. I expect as other agendas are pushed by other moral meddlers we will see similar things. I read about the hushed up case in the US of a 14 year old who died of an illegal abortion. Too terrified to tell her conservative parents she was pregnant and refused an abortion without parental consent (state requirement)she went ahead anyway. One day again in the future i expect the cases to come out and the moral crusaders to have to answer to their *own* morality. After all this is precisely what they wanted.

  21. That they have had to seek publicity to redress what should be a very personal decision is already grotesque. That we get to sit here and JUDGE and JURE over this girls personal life as a MORAL dilemma is even more abhorrent. Who the hell are we?????? Im sick of this voyeuristic society that levels complex personal choices and issues into some kind of moral porn. (I totally agree with you Alison)
    Let the Disabled Peoples Council stick to solving the more practical of disability problems, rather than dabbling in the pseudo ethical, where they seem to have little sense or expertise..(I also totally agree with you Ernest).

    It seems, that this child does not have much of a life anyway and will not be able to cope with the problems of menustration, Does she need the risk of having children thrust on her (or more particularly her mother).

  22. ”It seems, that this child does not have much of a life anyway”

    All life is precious, who among us is qualified to say that it is not up to much?

  23. When you become the mother of a severaly disabled child Typhoo you might have the qualifications to answer that one…there is always, very normally the mother of the disabled person, who looks after, gives up her life to provide for a disabled child. I know such a person and in the process her life, and in fairness, the life of her husband were destroyed. And to what end so that this disabled person carries on having a ‘precious’ life.

  24. ”When you become the mother of a severaly disabled child Typhoo you might have the qualifications to answer that one…”

    Haven’t you read the thread? I’ve been doing it for nearly 30 years.

  25. It changed my life, and that of my husband but never destroyed it. Never in a million years!,

  26. ”And to what end so that this disabled person carries on having a ‘precious’ life.”

    Your comments are attrocious.

  27. Well done Typhoo, very very courageous and clearly a decision that was right for you. But not everyone is the same? What you can cope with isnt what the parents of baby Charlotte could cope with. So in answer to your question ‘who among us is qualified to say that it is not up to much?’. There is no answer. Therefore only those directly responsible for and involved with that child get a say since it affects their lives, not ours. Legally the should have this option and the disabled groups should focus on providing support. After all they have already failed baby charlotte and her parents. they are doing the same again here. It is not our moral issue.

  28. That is true Alison. Everyone is different, but I still say if you cannot cope – don’t do it. I still feel it is societies moral issue. Why should we shy away? We can talk about these issues in theory- air them without identifying the adult-child involved can’t we?

    Support is essential. Understanding paramount. We cannot have understanding with airing the issues nor their complexity.

  29. Disabled groups are not nazi-they provide advocacy. I will not knock it off πŸ™‚ teh comment re the disabled persons quality of life was uncalled for. Comments like that affect people – no one knows who reads these forums.

  30. After I made these comments I knew someone was going to bring up the Nazis…ok so you have coped with a disabled child so have a medal, the people I know are having a struggle, as indeed are Baby Charlotte’s parents. It was never my intention to insinuate that the child should be terminated. Grow up, a hysterectomy is not life threatening. As an alternative has anyone considered the pill?

  31. God how ridiculous

    Typhoo

    You dismiss the parents of Baby Charlottes as people who were ‘going to crack anyway’ after the intense moralising they were subjected to, casuallu dismiss and accuse the mother in this case of ‘needing the attention’ but woe betide anyone who values the quality of life for the PARENTS too??

  32. ‘I still feel it is societies moral issue. Why should we shy away?’

    Because it ends up with someone calling another viewpoint NAZI thats why! When it isnt OUR business, OUR coping abilities, OUR family, OUR situation or OUR lives that are affected.

  33. Did you know maggie? Then my response was appropriate if even you saw the connection. Sometimes you should think before opening your trap.

    I never asked for a medal, I made the comments to you telling me when I was the mother of a disabled child then I’d be qualified….according to your own comments I am qualified.

    Maybe if you helped out the people you know, they would cope better and your comments would be more informed. eh?

  34. Alison even maggie saw the connction to the nazi’s via her own comments. Should I not state the obvious.

    Thes ‘issues’ are societies business. Why would you have it taboo?

  35. Screw the parents and their lives seems to be the general thrust! How is that Nazi?! She didnt say that she said she knew someone would try and chalk it up like that. So one persons view is to another persons distaste – *which is why this should be up to the family directly involved*.

    I think the comment about the mother in this case was uncalled for, – as was the judgment about Charlottes parents who were pushed about by moralisers. You see how we arent advocating anything here. Merely sitting in judgment of people.

    Picking over someones life is vile, deciding who is morally right and wrong…. Thats why moralising sucks. Its a legal case issue. End of

  36. Everytine i read about that child and her parents i feel like a curtain twitching voyeur. Someone else can take up the thread. Ive already done what i said i wouldnt.

  37. Why is it end of? Because you say so? You don’t get to decide that. The mother made it a media issue thats why we are discussing it. Where does it say to bring this to court you need to go to the media?

  38. ‘End of’ as in its a legal case, from my perspective. She raised the case for legal reasons like so many others before her, this is no different other than that it highlights the depths to which people will sink to impose their views on others – im talking about the disbaled groups dismissing her situation as a ‘social’ thing. I dont know her, the mother, the day to day circumstances and I certainly dont want to get drawn into judging her, or this, any further.

  39. The disabled groups didn’t put you in that position, the mother did. She did not need to court the media-she DECIDED to do that, and bring out the identity and a photograph of her child. There was no need for it. This case could have been heard quietly in any court in the land. this child is under the legal age limit, if she’d been raped no one would have identified her, the mother gave the media the opportunity to out the childs identity.

    I thoroughly disagree with her for that.

  40. Typhoo – i really dont want to get drawn into this. I genuinely find it unsettling to talk about and judge others and think, with himdsight on this thread, she has made that point very well by highlighting her own case. From what i glean of reading this in my lunchhour this is part of wider legal issues for the parents of disabled or sick children and no different to any of the other cases, including Charlottes, that have been raised to date.

  41. I would agree with you Alison if she’d had problems getting the doctors to back this decision. But why did she go to the media. To get backing? She already had it. Consultants are powerful backings. Is anyone against her getting the decision. Not that I can see.

    Groups raise issues where backing cannot be got. In this case it wasn’t necessary. Thats why the mother was wrong to go to the media.

  42. ”A consultant at her local hospital has taken up her cause and is seeking legal approval to carry out the procedure even though it is not medically needed.”

    Now if the case had gone to court and been refused that would be different.

  43. This is from the comments section contained in the link.. O look someone with downs had a hysterectomy and didn’t feel the need to go to the media!!! These decisions are taken all the time WITHOUT the media.

    ”We have a Down’s Syndrome daughter who is now 45 and living in a home. When she was nineteen and living at home with us and her four siblings (she is the eldest), she had a hysterectomy in order to prevent her suffering the monthly discomfort and the rest of her contacts from suffering embarrassment and distress when she played with herself and got blood all over herself. It was also to stop the possibility of her becoming pregnant through rape.”

  44. As ive written opn other blogs today – as a father of a 4 year old daughter with numerous disabilities, I wholeheartedly support any other fellow parent of a child with disabilities, who seeks to act in the best interests of their child’s quality of life.

    Condemnation from people who, as the mother Alison Thorpe quite rightly says "should come and spend a week with me, walking in my shoes" is ill judged and ignorant.

  45. Typhoo,

    Was it not the Disabled Peoples Council, (as fine a socialist title as one could imagine), who are the one’s creating the ruckus? The parents seem to be doing no more than defending themselves from busy bodies…

  46. Ernest

    My impression is that the mother went to the media and the groups got wind.Then created the fuss.

    Paul we have something in common. My child is 30.

    I support other parents, of course I do. I support the op if the parents believe it to be right, what I DO NOT support is going to the media prematurely and the outing of the identity.. This child had a right to privacy.

  47. This is a difficult one and I too am unsure of why it has become media fodder. ( I have not had time to read the whole thread).

    While I understand that the topic is a hysterectomy this does provide a qaundry in relation to people’s beliefs about abortion/euthanasia/etc. on a larger philosophical level.

    if the religious amongst us believe that we should not interfere with "God’s work," surely they can not support this mother’s move?
    If the rest of us believe that the mother is making the right choice, what does this say about our position on the other issues?
    As for raising a disabled child: I respect anyone who has the fortitude to do so. But not everyone has that fortitude, and abortion does not make them ‘nazis’ or anything else like it.
    We need to have compassion for each other and the dilemmas we face in life. AND take care on the slippery slope as well.

  48. ”When you become the mother of a severaly disabled child Typhoo you might have the qualifications to answer that one…there is always, very normally the mother of the disabled person, who looks after, gives up her life to provide for a disabled child. I know such a person and in the process her life, and in fairness, the life of her husband were destroyed. And to what end so that this disabled person carries on having a ‘precious’ life”.
    Posted by maggie.
    ——————————————–

    These are the comments where the nazi issue was replying to. I found the comments offensive, and even maggie herself said she knew someone would raise the issue. I feel strongly that a disabled persons life is as precious as anyone elses. It will be good to see Pauls reply, he has a disabled 4 year old. I feel all life is precious, and if these parents feel or are struggling, then they need to seek help or consider other options.

    1) disabled children do not destroy lives, they enhance them.
    2) The comment was offensive
    3) The commentator herself knew it would raise the nazi issue, all I did was think and say what she admitted would be the likely outcome of her comments.
    4) She did clear up the matter later – and hopefully the issue resolved.
    5) Raising it again brings nothing to the thread.
    .

    Compassion is the way forward- for all of life not only in relation to this, but this mother should have respected her childs privacy, and her own.

  49. Typhoo,
    This is just such a complex debate. The issue was raised, I am not even sure by whom, as I stated earlier, I have not read the whole debate. So, there is no need for you to get so defensive, although I do understand why you would. I would think that every word you argue on this topic is an argument for your own child and as the child’s mother that is natural. You have experienced the joy and love of the child, your life is richer, and I’ll bet you would fight tooth and nail for the child. So, I understand and admire your passion.

    One’s choice to have a disabled child is admirable, but it is not right for everyone. it certainly would not be right for me nor my family. Had I been in your situation all those years ago, my choice would have been different.

    I am not sure who is right or wrong, but no matter. As I said, compassion is the order of the day.

  50. In fairness, Pinky, Typhoo’s "Nazi" remark was in response to Maggie’s implication that the life of a disabled person is of less value than the life of a healthy person.

  51. In fairness, Pinky, Typhoo’s "Nazi" remark was in response to Maggie’s implication that the life of a disabled person is of less value than the life of a healthy person.

    I understand that. This is a very passionate debate and personalised for Typhoo.
    And I certainly do not agree that anyone’s life is of lesser value.

  52. Exactly Noel, all life is precious. Disabled children or adults are not children of a lesser God. Maggies remarks on a public forum, were at best indiscret, totally offensive and really uncalled for. Thats the trouble with public forums you don’t know who is reading them or their circumstances or what effect words have on people. That could be the start of our compassion.

  53. Ernest most likely has some experience of disability from his earlier comments, and Paul. Theres 3 people affected by this issue alone on ATW. Maggie was offensive and indiscreet. Perhaps unintentionally..but intention flies out the window when words are out.

  54. That could be the start of our compassion.

    Now now, don’t get carried away Typhoo. You want to end all our fun?:-)

  55. Im not getting back into this debate but BS is BS so it needs calling on as it crops up so regularly in these ‘debates’. Typhoo and Cunningham – that is not how i read Maggies remarks at all. She was quoting Typhoo back at her and implying she was dismissing the lives, needs and choices of the parents. Which is of course what this woman Alison is partly raising as a legal issue.

  56. Pinky, take a tip from a attachment and use quotes or >>..<< when quoting others.

    If you don’t, there is a risk that some of the more bizarre opinions on this site (and that’s saying something!) could be attributed to you, and that would be a shame.

  57. Typhoo – YOUR remarks about the mother in this case are equally questionable Typhoo and no less damning. You KEEP blaming her. Your remarks about her motives are indiscrete, totally offensive and really uncalled for.

  58. from a attachment = from your new attachment

    (but it was a poor attempt at humour anyway)

  59. Noel – heres a tip for you. Make comment in the debate. You rarely contribute other than to patronize (as you did with Patty on the other thread) and are again doing here. So do us all a favour and either say something of value to the debate itself or shut up!

  60. Aren’t there birth control pills which eliminate a woman from ever having a menstrual period? Seems like a simple solution for both sides in this moral morass to me.

    Leanne

  61. If you don’t, there is a risk that some of the more bizarre opinions on this site (and that’s saying something!) could be attributed to you, and that would be a shame.

    LOL wouldn’t it though!

    For once, I am stepping back from a debate here with this final word:
    This is what happens when we try to legislate on and interfere with people’s personal morality. Take care on that slippery slope!

  62. Alison, I don’t know if Maggie really thinks that, but the implication is clear in what she wrote:

    >>It seems, that this child does not have much of a life anyway <<

    and then when Typhoo replied that the girl’s life was precious to her, Maggie went on sarcastically:

    >>And to what end so that this disabled person carries on having a ‘precious’ life.<<

    i.e. that the effort was not worth it.

    But this girl’s life is all she has, and in the eyes of society must be every bit as "precious" as Maggie’s is to her.

    Her sarcasm about the Medal for Typhoo was also cruel and tasteless.

    IMO, this makes Typhoo’s "nazi" remark understandable – give or take a bit of Goodwin.

  63. Typhoo

    Sorry for the late response. I was reading the thread which was emailed to me earlier today. As a parent i share your interest in this case.

    I just want to be clear. Im all for the mother in this case. She is raising the issue for a reason not for self publicity. I think that a particularly harsh assessment.

    I do not think the comment above was ‘nazi’ having read it and detracts from the debate. I believe the point being made was the assumed quality of life for the child as wonderful which is often not the case – placed above any concern for the lives and worries of the parents.

    Leanne

    She might suffer thrombosis if she were to take the pill, a side effect which in her case is vastly heightened.

    As ive said before condemnation from people who, as the mother quite rightly says "should come and spend a week with me, walking in my shoes" is ill judged and ignorant.

  64. ‘This is what happens when we try to legislate on and interfere with people’s personal morality. Take care on that slippery slope!’

    My point earlier. Exactly Pinky – well said!

  65. Cunningham – i also think Typhoos comment about the mother was very cruel and tasteless. This is the point about peoples own morals applied as general ‘standards’. Im tired of ATW threads where the debate centres entirely around what someone else said and everyones opinion of that just so everyone can feel ‘holier than thou’. Its instinctive on ATW above any other blog for some reason and really spoils it.

  66. My cousin was born 35 years ago and due to complications with her delivery and lack of oxygen at birth she has been completely disabled with severe Cerebral Palsy. Back then her life expectancy was only 5 years. Her mom cared for her at home until the child became too large to manage on her own…..taller than the mom. She had to have a metal rod inserted in her back to help hold her upright. She cannot talk nor do anything for herself. She was placed in an extended care facility where she was raped and impregnated by a male night nurse just a few years back. This made national news. Law forbid that the pregnancy be terminated even though it was life-threatening because although she was 5’8" tall, she weighed less than 100 pounds. She survived the delivery, a C-section, and the rapist was found guilty and convicted, although he claimed it was "consensual sex". Her mother is now raising the child. The pain of a hysterectomy pales in comparison to what she possibly could go thru, and doctors are only guessing when they give a "time limit" to how long someone will live. In this case, the mother is right.

  67. >>Im tired of ATW threads where the debate centres entirely around what someone else said <<

    I agree, although I am sure you are guilty of this yourself.
    I didn’t comment on the substance of this case as it’s really too complex and beyond my ken.

    By the way, you are really in high-aggro mode today, aren’t you. Just wait till Typhoo gets back, if you’re spoiling for a fight, she’ll give you one!

  68. No doubt Cunningham.

    Please dont comment on my moods Cunningham. Its so you…not clever and rarely funny. When you get heated as you so often do about Ireland on the next thread ill be sure to bring it to your attention because its soooo, relevant. Meanwhile either comment on the debate or stop shit stirring.

  69. Jayne,

    That’s a tragic tale concerning your cousin. Thank you for sharing it with us, it provides thoughtful material for us all to consider.

  70. Its fair to say that this article really did not give enough information to really even allow any of us to really provide any insight from a personal perspective. CP is a disability that is based on a phsyical disability of movement(Palsy), you can be anything from a genius to a peron with mental retardation with CP – just like anyone else. The impairment of CP is non contagious and is not passed on through gentics to offspring. So basically this story has only said that someone has a physical disability of movement and that the parents want to have her womb removed because she will not understand it. I find it strange that on people dont ask the obvious question – can this young lady think for herself?

  71. Alsion.

    Look who is getting offensive. Or should I say defensive. Perhaps there are those who would have chosen abortion and flushed their child down the toilet. Wouldn’t you agree? Lets reserve our distaste for them.

  72. Im tired of ATW threads where the debate centres entirely around what someone else said and everyones opinion of that just so everyone can feel ‘holier than thou’. Its instinctive on ATW above any other blog for some reason and really spoils it.

    Monday, October 8, 2007 at 05:01PM | alison

    Then why do you come? To be holier than thou in pointing out other peoples judgements? You tried to stop this thread from the beginning. DV put it up, these issues need aired. Whether you like it or not.

    Now if you knew anything about how this works, you’d know the mother went to the media. Everything else came from there. Thats how it works. Like it or not.

  73. Of course Alison posted about her mother to make a point in a thread about the NHS. And of course her sister. But it pisses me off when peoples own morals are applied to general standards.

    But then Alison bullshit is bullshit. πŸ™‚

  74. No doubt Cunningham.

    Please dont comment on my moods Cunningham. Its so you…not clever and rarely funny. When you get heated as you so often do about Ireland on the next thread ill be sure to bring it to your attention because its soooo, relevant. Meanwhile either comment on the debate or stop shit stirring.

    Monday, October 8, 2007 at 05:21PM | alison

    Oh dear!! Time of the month?

  75. Im ignoring the BS.

    Why did she go to the media Typhoo? Obviously the rest of us are merely wrong and or stupid so why dont you tell us what kind of a person you judge her to be then? What specifically is it about her doing this you dont like and please advise how well you know her and her circumstances?

    Jayne

    Ive read your story in the news and it did spring to mind when i read this. It isnt so much thoughtful for me as case closed. What else is there to say? Im so sorry for you and your family.

  76. Paul,

    We can agree to disagree over the comment above. You’re right in that it does detract. Again re the mother, we can disagree. But I’ve been at it a long time, and I’m confident in my opinion – this mother went to the media for reasons unknown to me. Nor any reason I can fathom. She already had the backing of a consultant. These decisions are taken all the time without media interference. But I respect your siding with the mother – I think its instinctive to do that. However, it was a bad judgement call in my view. What will the child get from it? Nothing as far as I can see.

  77. LOL. Ignoring the bullshit. You raged at everyone and now are playing at ignoring. You’ve no answer other than bullshit thats why.

    How about abortion Alison? Any view.

  78. **"Perhaps there are those who would have chosen abortion and flushed their child down the toilet. Wouldn’t you agree? Lets reserve our distaste for them.’**

    Why would we have *distaste *for anyone for making a perfectly legal ( in most civilised places) personal decision in their personal lives?
    Really, what do we get from ‘moralising’ on these things? A sense of superiority?

  79. Heres a good idea Alison, why don’t you tell us how it works re the media and disability. Tell us the process, enlighten us.

  80. Pinky – i think that was a reference to me. I admitted to having an abortion on this site and assumed that was what this was in reference to ..though i dont actually get it πŸ˜›

    Typhoo – I didnt suggest your personal situation was in any way irrelevant so i dont see your point about my mum and the nhs either.

    We did more or less agree at the start. We differ where I find the invitation to moralise on the issue which is not ours, hard to understand. However youve been anxious to discredit this woman from the start. Why? Loads of people have told the press about their issues – I remember Jaynes case in the news and im sure you do?

  81. For bringing out the identity of the child. How many times do I need to say it??? I didn’t realise you had an abortion personally – thats unfair. I assumed as a feminist you were a defender of them, and used it to highlight issues you get passionate and OTT about.

  82. Typhoo, have you considered that the mother was preempting any legal action or news coverage brought on by the ‘disabled rights groups.’ Perhaps she asserted control of any coverage of this by getting her own story out there?
    Just a suggestion, mind. There could be a number of reasons.

  83. You made reference to peoples own morality being used, I merely point out how you do it. Moat, plank, eye etc……

  84. Pinky – i think that was a reference to me. I admitted to having an abortion on this site and assumed that was what this was in reference to ..though i dont actually get it πŸ˜›

    Alison, there is nothing to ‘admit’ to when choosing to have an abortion. It is a personal choice made by thousands of women on a daily basis. A personal choice which I support wholeheartedly.

  85. This was a private matter, no group would have known. The parents, consultant and perhaps social services. Full stop. How did the group get to know?

  86. Typhoo

    She is raising the issue for a reason not for self publicity. I respect her going to the press because she is highlighting an issue we as parents should not have to face. I dont have a problem with her doing this though the feedback on it is often hard to understand and I agree with the comments that the moralising is totally without justification. Im hogging someones PC and have to go. Thats all i can say.

  87. ‘A consultant at her local hospital has taken up her cause and is seeking legal approval to carry out the procedure even though it is not medically needed.’

    Typhoo, the mother needs legal approval from the state to have the operation performed. This would have become media fodder whether the mother had preempted or not.
    In light of that I congratulate the mother for taking control of the issue.

  88. No. That is NOT the way it works. I refer you also to my 2.47pm comment. There another family tell their story not unlike this one, and NO media involvement. Check out the comments in Davids link.

    I’ll make a deal with all of you. If any reason comes out as to why this mother went to the media, I’ll accept I’m wrong. Until some sensible reason emerges I stand over what I say.

  89. Right. I have this PC. She was successful in taking control of the situation. What is wrong with that please? Im pleased but saddened that Jaynes case made the news. Would that many more could. I really dont understand your motives here now I must say.

  90. Thypoo, I read the links and your 2.47 as suggested, but I still do not see your point.

    You said later " My impression is that the mother went to the media and the groups got wind.Then created the fuss."

    What do you mean it is your impression? From where do you get this impression. I can not conclude on it one way or the other.

  91. Pinky
    The consultants are bound to confidentiality. Do you agree with that, as are the childs doctors. As are the social services. That leaves the parents. Obviously they (consultant, doctors and ss) are behind her. Why? If not they could remove her. The parents are not the only people involved.Nor are they the only ones who could look after her. All others are bound by confidentiality.

    These parents went to the media. Truthfully there was no reason. They had backing. It hadn’t reached court, reade the links this is not the first hysterectomy of this sort. This isn’t even news.

  92. I’m not against parents going to the media when there is cause. There just is no cause in this case.

  93. *You said later " My impression is that the mother went to the media and the groups got wind.Then created the fuss."

    What do you mean it is your impression? From where do you get this impression. I can not conclude on it one way or the other.*

    Typhoo, thanks for the 6.40pm but it doesn’t answer the question I posed to you, and reposted above.
    I am not saying you are mistaken here, I am saying we have little knowledge or evidence as to what motivated the mother. None whatsoever.

    You are right in the confidentiality of the grouos you netion, however the rights group are not required to do same, as far as I know.

    Anyway it is a qaundrum.

  94. Im still unclear as to the issues you have since there is a ’cause’. The law has not been changed so there is a clear need to keep challenging it. Related to this is the fact that this would be ‘a medical first in the UK’. This means getting medical support for parents in these cases and as a result legal reform. This is case law like anything else.

  95. No Pinky, the rights group were told by someone. Who? The professionals are bound by confidentiality.The parent was not. I know how it works. When there is cause to go to the media this is powerful stuff in the interest of the child. There is no cause here.

  96. It’s NOT a medical first. Read the comments in the link David provided. They already had medical support from the consultant.

  97. Can I point out the ‘a medical first’ and having a consultants support in this case are not synonymous?

  98. Paul, read the comments to find other people who have had this done. One of them has downs already refered to in this thread. The paper see it as a medical first, where they got that from I dunno.

  99. No Pinky, the rights group were told by someone. Who? The professionals are bound by confidentiality.The parent was not. I know how it works. When there is cause to go to the media this is powerful stuff in the interest of the child. There is no cause here.

    Typhoo, with all due respect, you know about YOUR OWN situation and how it works. You know nothing about anyone elses.
    I believe that you are passionate about this for good cause, but none of us have any evidence or knowledge of how this proceeded, who told who or what.

  100. Pinky,

    Show me where it is not the same procedure nation wide? All professionals work to the same guidelines. Confidentially is one. These things are pretty uniform accross the UK. Believe what you like, it makes no difference – but no one else is disagreeing with these parents. They have full backing, no need for the media. Of course if she wants to publicise her childs business that is her affair. But if she publicises it for no cause then others are entitled to comment on it, aas they are doing all over the internet, including in the link.

    Thats part of the price of going public.

  101. Final word. I completely support the views of the mother and cannot see how she is doing anything devious here.

    It is stated that the medical consent application is being prepared on their behalf and will open up choice for people via case law. It is a first in this country. The only other similar case was in the US this year.

    To quote the mother verbatim "I am looking at the interests of an individual, my daughter. I am not suggesting that disabled children as a whole are given this operation.

    "Please realise I am not advocating this as a blanket policy for disabled children. For my daughter this, I think, is the right decision and a decision we have thought long and hard about."

    "But I think there needs to be choice for individuals,"

    That choice does not exist so she is 100% right to challenge it openly. My beef is with those who moralise on people having this choice in the first place. I view this as ill judged and ignorant. In that respect I wholeheartedly support her views and those of Alison, Pinky and anyone else who supports individual choice. Its important for us as parents.

  102. You haven’t read the comments, only what the media tells you. So much for dissenting views of msm. I didn’t say the mother was devious, I said she made a bad call.

    Paul, why not just tie the ovaries, why remove the womb?

  103. ‘but no one else is disagreeing with these parents. They have full backing, no need for the media.

    Wait, aren’t the rights groups quoted in the link disagreeing?
    Also the mother must get legal approval for this, so this disputes your theory that noone is in disagreement.
    My last word as well, because I am just not sure what it is you are arguing anymore Typhoo.
    Good luck.

  104. Individual choice Paul. Which individual? The child has no choice. This is not the childs choice Paul, this is the motherss choice. So why not tie the ovaries?

  105. lol ok last word:

    You may not have called her devious, but you did state the following:

    "Of course the mother needs the attention too, munchausen isn’t dead when we have women like this living through their disabled children. "

    Not a very compassionate thing to say Typhoo.

  106. I had a disabled sister and if my parents had had the option for this surgery I’m not sure they would have taken it. My sister was given the shots later in life to stop her period. Maybe Katie’s mom should look into this option?

  107. Lets talk compassion. Which is more compassionate? Removal of the womb something like 4 hr surgery, or tie the ovaries a 30 minute job?

    Both the same result – no pregnancy. Removal of the womb, will stop the bleeding, but not the mood swings, or anything else. Consider they already clean up mess from toileting.

    Which is the compassionate choice?

  108. The mother has made it abundantly clear that this is for her daughter and their circumstances. The pill and shots run a risk of thrombosis. She feels this is the compassionate choice for them overall and is closest to the facts and her daughter. You get no say so in their circumstances and this why this is so very dangerous and opinions are so ill judged. Im reluctant to discuss such very personal affairs as you have raised based on a hyperthetical situation. How can you say ‘exactly’ to K when you dont know this woman Alison or her daughter. What gives you this right? And since she is not advocating this choice for anyone in either of your families can you explain what and who gives you such a right? This is the danger of moralising.

  109. The mother is ASSUMING that menstruation will be painful, even torturous. That is not the case for most women. She is anticipating problems which may never happen. Menstruation is not a disease and need not be all that uncomfortable. I never had a problem with it. Why is mom so certain her daughter will?

  110. You’d think twice about a 4 hr operation. The mother made it public, she gave everybody a say, including you, and the others in Davids link. Who gives you the right to lecture me or K for that matter. Not that I care just pointing out the moat and plank and eye stuff.

  111. "Of course the mother needs the attention too, munchausen isn’t dead when we have women like this living through their disabled children. "

    I missed that. I think its you that is the attention seeker here, moral judgment from someone with such a biased view? I really dont know what you are argiung about. Good night.

  112. I’m not saying this is the case in this instance, but there are those who would salvate at the prospect of challenging the law. I’ve seen it happen, and heard horror stories, including horror stories of parents and the abuse of power over such children.

  113. Paul, what attention. Storm off in a strutt if you like πŸ™‚ it doesn’t make you right. This is a huge decision over someone elses body.

  114. And it is not yours Typhoo. But you seem to be implying that it is. Because if we dont accept the parents considered discussions in this situation and day to day care of their daughter we must surely just as well accept yours and impose it on them. Would you be happy with that?

  115. This is a huge decision over someone elses body.

    Which you, with your alternate suggestions above, have no right to make for this family.

  116. Typhoo, I am intrigued by this thread.

    Tell me very clearly and consisely here, what exactly is it you are arguing?

  117. LOL Paul. I’m not implying this is my decision. Far from it. But I said it before, these issues need aired and discussed, and I’m discussing. If someone doesn’t like what I’m saying fair enough, argue the point. This is in the public domain after all. Someone put it there to be discussed. Bring on the issues and the discussion, I welcome it all.

  118. Sorry to come back so late Typhoid but was perusing the chapters written in the concentrations camps to ensure that I could be of use. I was writing from the mother’s perspective enabling her to keep the girl and not put her in a home like so many other mentally damaged children/people. Any help she can get will be of great benefit. So she made it public, and we are all dragged into this dilema what are we going to do hang her. I apologise too for misreading your comments but I stand by my comments of helping the mother in any way shape or form. My comment of she girl in question does not have much a a life stands too…does she? If we can take away ‘the curse’ is this so bad and shouldn’t it improve her life. Our arguments are all academic it will be decided in a Court of law and our views of no consequence.

  119. Pinky,

    If military action was to happen tomorrow in lets say Iran, would you not say, if it was your opinion, that not all other options have been investigated. What about discussion, or economic sanctions?

    Its the same here. Why can’t the other options be aired and discussed. Why the taboo?

  120. I want the choice to discuss the options with the medical profession and factor in what we know. We worry about when we have long since departed where our daughter is still on this earth in someone elses hands. Only we are closest to this and in light of Jaynes comment we worry greatly. Can I just add that I do NOT want your ideas imposed on me, my wife and our daughter’s choices in the future? I do not want to leave the choice about her health to strangers? Which is what you are proposing since this lady is not advocating enforcement. You are completely discounting those closest to her. And that is why we worry about who will look after her in the future if we are not here.

  121. *Far from it. But I said it before, these issues need aired and discussed, and I’m discussing.*

    So if these issues need aired, why are you condemning the mother of this child, for doing just that?

    *Someone put it there to be discussed.*

    You have asserted all along that it is the mother who put it in the public domian without any evidence that she did originally, or if she did, her reasons for doing so. You went further saying she did so because she wanted attention for herself. That is a cruel thing to say, and I am just not sure why you said that. Perhaps you will explain?

  122. Maggie, thank you for the apology. If our arguments are academic then why bring it into the court of public opinion in the first place? You’re right about the court of law – it will be decided there. Which begs the question I posed before, why not wait and see what happens in court. If the request is denied, then bring it into the public domain, and appeal, like everybody else.

  123. Pinky, ARRRGGGG, because she brought out the identity of the child, when there was no need.

  124. ‘these issues need aired and discussed’ – may i ask why? So you can moralise away the choice argument perchance? What consequence is it to debate this Typhoo?

  125. Pinky,

    If military action was to happen tomorrow in lets say Iran, would you not say, if it was your opinion, that not all other options have been investigated. What about discussion, or economic sanctions?

    Its the same here. Why can’t the other options be aired and discussed. Why the taboo?

    Typhoo, you are now descending into the ridiculous.Sorry to say.

    Do you really think this family have not investigated every option out of love for their daughter? How arrogant of you! As Paul has said, and has been repeated through-out this thread, this is what happens when we moralise about others personal lives and choices. We assume we know better than they, and we do not.

  126. Paul, those concerns are shared by us all. When your child becomes an adult, the law will treat her as such. You may not get any say where she goes to live.

    There are new laws now about empowerment of the disabled and learning challenged.

  127. *Pinky, ARRRGGGG, because she brought out the identity of the child, when there was no need. *

    Do you know for a fact that the RIGHTS group would not have done the same, and therefore she preempted them so that she could control the controversy surrounding her daughter? Do you know that as fact, yes or no?

  128. What are the consequences of not debating it Paul? The issues are there they ought to be discussed. Infact as a disabled child grows it will be told its rights in school and other places.

  129. ‘If the request is denied, then bring it into the public domain, and appeal, like everybody else’.

    Do you read what you are writing? Yes better hidden away than chance a legal change you dont approve of. Thats what this seems to boil down to!

  130. What are the consequences of not debating it Paul? The issues are there they ought to be discussed. Infact as a disabled child grows it will be told its rights in school and other places.

    So why do you demean the mother who did exactly that?

  131. Pinky,

    The mother in the article cited the reasons for not giving the pill or shots, and cited the case for a removal of the womb. Why did she not cite the case for the tying of the tubes? This question was also posed in Davids link, if you care to read thru it. Can someone else pose the question but not I?

  132. Pinky, not for that, for bringing the childs identity into the open. gawd sake the kid has a right to privacy. If nothing else.

  133. Paul,

    Who wants to hide it away. By going to court without the media??? Thats hiding an issue. Really?

  134. ‘issues are there they ought to be discussed’

    No you want them steered. The family are closest to the situation and are best placed to discuss said issues – but thats not good enbough since you hold them in some ill conceived contempt regards ‘tying of tubes’, knowing bugger all about what has been discussed by the people that matter!

  135. Who wants to hide it away. By going to court without the media??? Thats hiding an issue. Really?

    Please explain what you are talking about here? Im FOR the case going to court and fully support the mother/family.

  136. Im in a rush and have to go now/get off this pc. I will say this though – I dont think privacy is your beef – not at all.

  137. LOL. I don’t want anything steered. I’m discussing something in the public domain, I’m not asking the family or anyone else to take my views on board. This issue is being discussed in Davids link in the comments section and I’m sure other places. These other people are discussing the piece, options etc. As am I.

  138. Typhoo, perhaps the mother felt full disclosure of all the facts in the case was the right thing to do.
    Are you saying she did that to satisfy her own need for attention? Perhaps she is of the mind that it is ok to be open, her daughter and her plight is nothing to be ashamed about?

    I mean really, what you are judging her on is your OWN preference for privacy, your own standards for your situation. Which again brings us full circle to the point of moralising about personal choices.

    As for tying tubes, same rule applies. You are moralisng about personal choices.

    I would be inclined to believe that this woman loves and protects her child as much as you do yours. I would also be inclined to believe that she knows what is best for her child. I would also be inclined to some compassion and not condemn this woman as an attention seeker.

  139. Well if she has no preferance for privacy, and puts out full disclosure into the media, then she ought not to object to people moralising about her situation. Because no matter the situation there will always be those who either disagree or see things differently. That is a risk she took. As you can see from the link, this ‘moralising’ ‘discussion’, disagreeing etc is happening elsewhere too.

    I still think it was a bad call to out the childs identity. That is truly what I find objectionable. The child has a right to her own business.

    anyhow, I need to be off now.

  140. I have a daughter with Rett syndrome. http://www.rettsyndrome.org She is 21 now. With the side effects bone/calcium loss I did no intervention. Her cyles are normal not extreme; I give midol/tylenol she is uncomfortable one day not severe. The mother is correct which ever choice she makes. Fear sometimes makes the choice. My daughter does not walk or talk; she does not sit around wishing she could walk or talk. She lives her life to the fulliest; she is happy all the time. She cries more from constipation than cycles. I asked God? God why does she cry so much with all these other complications she endures. God answered with "If she could not laugh and cry she may have already come back to me" the crying and laughing exercises her lungs just like a baby does when they haven’t learned to walk yet. The mother is correct.

  141. Well if she has no preferance for privacy, and puts out full disclosure into the media, then she ought not to object to people moralising about her situation.

    Typhoo, I can only speak for myself when I say that my instinct upon reading this story was to support the mother and hope that she and her daughter can live life to the fullest. My instict is to trust that this woman loves her child, will do what’s best for her, and understands their own position better than anyone else does.
    And that’s it.

  142. I haven’t read all the posts so sorry if i’m repeating somebody?

    As far as i can tell the reason the Mother is wanting the operation is so as not to cause the child discomfort during her period?
    Surely by 15 she would already be well into this?
    Or am i missing something?
    ..and has anyone asked the girl’s father what he thinks?

  143. Steve Thumann, Thanks for sharing your experience.

    JM, I would suggest that fifteen was not unusual for someone who by the nature of the disability was physically immature at that age. re the Father’s opinion, I would have thought he would have deferred to the Mother on this one…

  144. Steve, I so agree. Without faith where would we be? I understand your position completely, and these decisions are sent our way. How can anyone know what it is to watch ones child degress instead of progress. I know one mother whose adult child literally digressed into a child overnight. One minute she could speak limitedly, the next only incoherently. Parents watch these things every day. Faith or something that gives us the strength to do so.
    I agree the mother is most probably right in this case, what I don’t get is this. Why fight or highlight this within the media now, isn’t there enough fights and struggle? Is it not better to pick your battles and only fight those in your childs interests. The daily battles, the battles for resources. Surely this battle was over before it begun. Having the backing of the doctors and not even into court, why publicise it and bring opprobrium upon your own head, criticism of what you are doing and invite all and sundry into a childs business?

    They don’t even know if menstrutation will cause any problems for the child. Could they not wait and see?

    I’m just glad its not me in the media. I thought like others this mother was trying to control the situation, but once you put something into the public domain you don’t have any control over it. It can make things worse and the battle more difficult with media pressure, or it can help profoundly.

    But they could wait and see if menstrutation brings any problems. Like your child, and many other handicapped teenagers, they can get thru this with little difficulty compared to other health issues.

  145. JM

    Disability causes delays in these things. It’s most likely imminent. The body is slower.

  146. I skipped a good part of the end of this thread; it seemed to repeat itself several times. Now that that’s out of the way, I want you to understand just who I am saying this. No, I’m not a parent of a disabled child. In fact, I’m a high school sophomore simply interested in keeping up with current issues. I thought I might write up my take on things, as an outsider.

    This is the mother’s decision. Obviously if she’s been living with the girl for fifteen years, she has her best interest at heart with this surgery. What sort of mother wouldn’t, especially one with a disabled daughter? The extreme cost and pain of this surgery proves to me all the more that her mother thinks that this will truly aid the girl’s quality of life. My mother had a hysterectomy at age 36 because of setting disease. As such I can see the helpful aspect of this and not just the ‘tie the tubes’ side. So what right does anyone else to tell her she can’t do this for her daughter?

    Not that I like how much media it’s been getting.

  147. Pinky, Ernest, Alison, Maggie and Paul..excellent arguments.

    The mother is right to try to provide an outcome that helps them and also gives other parents better provisions. If others choose to criticize her that says more about them than her. Its always morally better to remain out of criticising others in such a situation.

  148. Technically its not the mothers decision. If the docs were against it, they could go to court against the mother, so as I said before the doctors are backing the mother. But these things are fluid. Either side or a third party, social services for example, or the childs community nurse could ask for a delay to see if menstration brings any problems, but with guardian consent once the deal was struck then it could go ahead. Your mother is differrent, she made her own decision and had an illness. This child has no illness, they are to remove a perfectly healthy womb. These things are joint decisions. I have no problem with that if that is what is best, perhaps it is a little premature, but if the mother thinks ;;; then for me more or less thats ok.

    My problem is the media attention, like you.

  149. What does it say John? Does it say like maggie says earlier twice that the childs life isn’t much?

  150. I have only read through about the first 50 or so comments, so my apologies if what I say has already been said:
    I understand the young woman in question suffers from cerebral palsy. As far as I am aware, therefore she is not at all mentally disabled, just physically. CP causes random uncontrollable spasmodic movements of the limbs and body, but (afaik) does not affect the mind. Therefore, she is fully aware of the situation, but perhaps lacks the means to make her wishes intelligible to others, depending on how severe her condition is.
    Also I would like to point out (re an earlier comment) that CP is NOT what Professor Stephen Hawking suffers from – his condition is (an exceptionally slow-progressing form of) Motor Neurone Disease, another condition which affects the body but not the mind in any way.
    As to the issue at hand, I tend to agree with Alison. This young woman’s decision to have a full hysterectomy (assuming it to be HER OWN full, conscious, and made without any duress, decision) ought to be a private matter for her alone. I assume she has already been through all other options, that she knows that the contraceptive pill can often dramatically reduce or even eliminate menstrual pain. All the best to her, I hope she manages to control her situation as best she can.

  151. It is very hard for any parent to watch and/or hear their child cry or be in distress, without being able to do anything about it. Whether the child is in perfect health, or disabled, the effect is the same. No one should judge an other’s plight. This girl is 15. She has most likely had her period for several years already. I think that by now the mother would know how much discomfort her daughter is in. Only SHE can, and should, judge what is best for her child.

  152. Youve monopolated this thread from what ive read. Reading it you demonstrate precious little empathy for the parents whereas others have at least tried to. They certainly seem to be more into empathising and less into moralising.

  153. ”she WILL suffer undue pain and confusion at the ONSET of woman hood.’

    Linda. Read the link.

  154. John,

    Will you could have come and monopolised it if you wanted. I contacted David Vance and said I felt that and he told me I was welcome to express my views, so tell me how that is your business?

    This isn’t about empathy for the parents, its about the child. It’s her womb. Its a discussion on whether or not this is the right thing to do, and its happening elsewhere as well as here. If you have a problem discussing it, e mail david vance and tell him so, its his blog and his thread.

  155. I forgot to mention, I guess I’m not totally neutral after all. I work for OutdoorsForAll, an orginization in Seattle that helps disabled people of all ages learn or relearn to do outdoor activities. I help out with the snowboarding program. No matter what the illness, no matter their mental status, seeing them up on that mountain doing something they love is amazing.

    I have many friends through my work and I rather side
    with the mother, because I’d agree short-term pain is far better than long-term and can you imagine being quite disabled and not knowing what’s going on? What would you be able to do about menstruating problems? I love all my friends to death, but I know some ofthem could not cope with period cramps and discharge on their own.

  156. Typhoo, yes you’re right, it appears that the young woman’s mother has effectively made the decision. The article doesn’t even specifically mention CP, (where did I pick that up from? am I wrong?)
    On balance, given that the patient apparently cannot effectively communicate her wishes, then I support the mother’s judgement in this case, while not disagreeing in general with Scope’s broad statement "Scope does not believe that a child should be modified to fit society but instead that society needs to adapt and become more inclusive of disabled people.".

  157. I agree that the mother and family are best placed for this. And only them. They live with her and know her best. Also – if its the attention they are getting then heres some news…You can choose not to read a media story if it annoys you that much (typhoo)! It may actually HELP other parents though so leave them alone.

  158. Now if the mother had made a decision to send her daughter to the "dignitas" clinic in Switzerlamd for a so-called (belch) "dignified" death, then my opinion would be totally different! But that’s another matter entirely.

  159. Alex, lol don’t express my views. I note you expressed yours. this is in the public domain on a public forum – but I shouldn’t speak on it.

    Tom. I also agree with scope and can see their point of view. They are a very good organisation and are very experienced in these matters. They are operating a long time.

  160. I knid of take the view that we are ALL "disabled people" in some way or another. Some peoples’ disabilities are more obvious than others, that’s all.

  161. Err yeah right, lol. You are scary. Back off and give people room to breathe why dont you woman?

  162. Slightly off-topic perhaps, but one of the most enlightening, memorable and "real" conversations I have ever had in my whole life, took place between myself and a young chap with cerebral palsy, in the bar of a hotel serving Gatwick airport, about 8 or 9 years ago. I think it was called the "Europa"?
    Anyway, I was by myself in the bar, just passing the evening, when this man struck up a conversation with me. He had CP and it made his movements and speech obviously "bad", it was not easy to follow his speech. Yet he was such a friendly, extroverted person, I couldn’t help but like chatting with him, we had a great old chat. I’ve always remembered him saying to me that he didn’t want to be thought of as "that guy with the slurred speech and awkward movements", that he longed to be accepted just as himself, but that it was difficult for him. I remember remarking to him that although he was "disabled" in an obvious way, he had a "gift" I longed for but didn’t have: he could strike up a conversation as naturally as anything with total strangers in bars, whereas I longed to have that same ability (with women, of course!) but lacked it. We had a right good laugh over that!

  163. ‘I will move heaven and earth’

    Bless Alison Thorpe. Her daughter is doubly incontinent as well (per the above link) which wasnt made clear before. What an incredible mother. She raised her as a single mother for most of her life too.

  164. JM

    Disability causes delays in these things. It’s most likely imminent. The body is slower.

    I stand corrected, thanks.

  165. "She said her request for a hysterectomy for her daughter had been met with reluctance by doctors, and she would probably have to go to court to fight for it.

    Doctors had suggested putting Katie on the Pill, or offered three-monthly injections. But Ms Thorpe was concerned about possible side effects."

    From Typhoo’s link: It looks like the medical community is not completely on Alison’s side, as previously claimed by Typhoo.

  166. Pinky

    Look at the date between the two telegraph articles. Obviously they’ve changed their minds. Why?And what do you think of the controversial treatment ?

  167. Hold on…. from that link:
    "….aged nine but who has a mental age of three months because of a rare brain condition"
    This was a factor I was unaware of until now. So she not only has CP but also some other syndrome? That is important.
    If this is true then I can’t condemn her mother for trying to improve (or "smooth out the rough spots" of) her daughter’s life. A woman with both CP and a mental age of 3 has hardly any prospect of motherhood. Surely menstruation could only cause her increased discomfort and anxiety? In the light of this, I support her mother’s decision. And like Alison, I feel rather "grubby" that I even know her name! Give this family their privacy, for heaven’s sake.

  168. Typhoo,
    It is not clear that she ever had complete support from the medical community- the only person that claimed that as far as I can see is you. So which doctors changed their minds?

    As for treatments, I stated my position on that previously- I leave it to these parents who love and care for their children to decide what is best for their children. Why sould I think any differently?

  169. Well it looks like consultant has. What do you think of the controversial treatment that the mother wants which will prevent the child from growing up. The womb removal is to stop the growing up.

  170. I’m on the fence on this one. I completely side with the mother and see the need to make the daughter’s, and by extention – the mother’s, quality of life better. I actually know a family that did this successfully. The daughter was severly mentally retarded and completely freaked out (thought she was dying) every month. They did, in fact, allow her to have the hysterectomy.

    However – here’s the fence sitting part – I see the door opening to things they’re already having problems with in law making. Doctor assisted suicide, etc. If a family thinks it’s more "humane" to assist in the death of a loved one that is suffering, shouldn’t they be granted the same rights?

    I’m not saying a blanket NO to all will work – but I think it’ll definitely be interested to see what happens.

  171. But, Typhoo, the woman in this case cannot "grow up" in the normal way, due to her condition. For any non-physically disabled woman I would agree, the removal of her womb or fallopian tubes is something that only she should be able to agree to. But in this case, the reason is to minimise her needless pain from a bodily function which she can never hope to gain from, ie, motherhood. Sometimes, I think that when you have a severely disabled daughter who is incapable of making such decisions for herself, then the parent(s) should try and act for them, in the best possible way.

  172. We can only work on the info in the public domain, but its possible to surmise that she asked for another consultant as is a patients right, or a second opinion. Or went private, or changed hospitals due to some other reason. However, what now seems clear is that this woman wants her child to have controversial treatment, of which hysterectomy appears to be only a part?? That treatment caused controversy in the US.

  173. Help me out here Typhoo.
    The first article says ‘a consultant’, the second article does not mention a consultant as far as I can see. ( I may have missed it)

    So what are you basing your claims that ‘the consultant’ has changed his mind, on?

  174. This is a summary of the Ashley treatment that the mother wants.

    The Ashley Treatment is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley. We pursued this treatment after much thought, research, and discussions with doctors

  175. Typhoo,

    The basis on your argument previously was that this woman did not need to go into the public domian because she has the support of everyone. You questioned her motives ( and indeed condemned her) for going public based on that very premise.

    It is now evident that the mother does have a bit of a fight on her hands, and may have come public as part of that fight.

    So your earlier conclusions are incorrect, and so were your judgements on the mother?

  176. It was obvious to us that we could significantly elevate Ashley’s adult quality of life by pursuing the following three goals:

    1- Limiting final height using high-dose estrogen therapy.
    2- Avoiding menstruation and cramps by removing the uterus (hysterectomy).
    3- Limiting growth of the breasts by removing the early breast buds

  177. O my judgements were incorrect, shes worse than I thought. As to the consultant, I already answered. Not enough for you, that is indifferent to me. I worked on Davids link, but my God the full picture is something else.

    Do you agree with this treatment, if so hopefully one day you or your child may be subjected to it. thankfully for you when you got ill you didn’t loose your senses for someone to do this to you. If you think this is mothering god help your children.

  178. ‘O my judgements were incorrect, shes worse than I thought. As to the consultant, I already answered. Not enough for you, that is indifferent to me. I worked on Davids link, but my God the full picture is something else.

    Do you agree with this treatment, if so hopefully one day you or your child may be subjected to it. thankfully for you when you got ill you didn’t loose your senses for someone to do this to you. If you think this is mothering god help your children.’

    Typhoo, you have descended into the ridiculous and obscene. Thank goodness indeed that I have compassionate people around me who love me and care for me, and do what is right by me, without moralising. Just like the mother in question, Alison.

  179. ‘shes worse than I thought’

    So are you probably. We can be the judge of you too.

    ‘I need to be sick’.

    Thats probably because you’ve spent all this time winding yourself up armed with nothing but conjecture. And your moralising of course.

  180. I have seen suggestions of the pill on here, but I have not seen any suggestion to try Depo-Provera. I get a shot (not terribly painful) once every three months. I haven’t had my period in YEARS and it really limits my headaches, cramps, mood swings, etc. My sister has a much milder case of CP than Katie Thorpe has, but is still on a number of different medications. She is also on the shot and tolerates it very well. I understand that medications have different side effects on different people, especially if a person is already on a number of other medications, but there is a lot of gray area between doing nothing and a total hysterectomy (which could affect her cancer risk in the future…) that should be explored before something irreversible is done.
    P.S. My sister is married and has a delightful 8 year old son. I know the level of disability is very different in her case, but I want to remind everyone that many disabled people live normal, happy lives.

  181. Does love equal mutilation? Is that what you think love is?? If so I pity you.If that were happening in Uganda there’d be an outcry, and rightly so.

    God help you Pinky, and anyone who would agree to mutilation and call it mothering. There experience of mothering must be sadly lacking…..
    I hope this woman is stopped in her tracks.

  182. but I want to remind everyone that many disabled people live normal, happy lives.

    Jenn of course they do. As Tom said earlier ( and I Loved the sentiment Tom), we are all disabled people in some ways……

  183. Alex, I can judge you too. A’hole. LOL

    How about you, do you agree with this treatment this woman seeks. Bet you do.

  184. >>if so hopefully one day you or your child may be subjected to it.<<

    Typhoo, of all the OTT comments this thread has generated, that one of yours really takes the biscuit.

  185. Thypoo,
    My mother is a truly wonderful woman whom I enjoy the most wonderful relationahip with. In her retirement she has spent her ‘wonder years’ ( as she likes to call them) studying and travelling to other countries sharing her knowledge and compassion to many people, working alongside other medical professionals helping poor people around the world.
    We are all so proud of her as she is of all of us. She taught us tolerance and compassion, something so terrible lacking in so many people we encouter in our lives. Moralising and judgement was never her forte, nor is it mine.

  186. Mutilation? Typhoo – you are a jerk. I hope you and your family are never subjected to this level of scrutiny and hyperbole. What nonsense this thread has (inevitably) become.

  187. ‘Well Noel, . If she finds it OTT let her say so, as I did to maggie and we’ll discuss it.’

    Not at all, I value free speech, as it reveals so much about the person. In this case, well…… there doesn’t seem to be much disagreement.

  188. Is mutilation. Like the ”mother” in question. I find what this ”mother” is doing reprehensible. People discuss HIV, IVF, all sorts and ‘moralise’. If I moralise then so be it. I make no apology for it. It is not pioneer treatment, its controversial and in my book mutilation.

    I’ve said my piece.

  189. What nonsense this thread has (inevitably) become.

    It has been quite revealing watching someone descend into the obscene and unstable as Thypoo has. I could be cruel and moralise and say something about how that behaviour might translate into real life. But I won’t!

  190. Alex, what do you call removal of a healthy womb, removal of healthy breasts and injections to keep a person short in height?

    Enlighten me. What word would you use?

  191. Feel free Pinky. Obscene and unstable, for objecting to what is happening to this child? You’ve been here ‘moralising’ also.

  192. Typhoo

    There are vastly different levels of disability. The parents cited on this thread want to enhance rather than diminish the lives of their severely handicapped children. The "stopping them growing up" issue is enormously emotive but they have decided that in the case of their children, they want to spare them further physical and emotional suffering – its not eugenics or criminal. It is their say – not ours

  193. Anybody say it wasn’t? I said my piece on a public forum, on an issue in the public domain. Same as anybody else who wanted to.

  194. Folks

    Typhoo is as entitled to his/her opinion as anyone else.
    Whether or not you agree with it is neither here nor there.
    It’s what free speech and having an opinion is all about.
    It’s a sad day when a sensitive topic like this one degenerates into name calling and personal insult.

  195. I think, if the woman in question was not "disabled" in this way, then of corse it would be horrific for anyone to make this sort of decision without her consent. But assuming that this woman IS disabled in the way I understand her to be, then her guardians have a duty to make such decisions, and as long as they are acting "in her best interests" and are not seeking to terminate or shorten her life, then they must be allowed a certain freehold. In this particular instance, these decisions are not merely the "removal of a healthy womb, removal of healthy breasts and injections to keep a person short in height". That would certainly be unacceptable to do to a person not disabled in this way, but in this specific case, it seems to me that the parents are trying to act from noble intentions towards their daughter.

  196. What noble intentions tom? Enlighten me. How noble is it to have this done to you because you are disabled, and what happened to you agreeing with scope?

  197. …But just to be clear, I believe that, no matter what sot of disability this person suffers from, any medical decision to remove life-granting treatmentk, or to actively shorten her life or prematurely terminate it, whether with her own consent or not, would amount to murder. But that’s another debate. Just wanted to make my position clear.

  198. I thought that CP was a physical disability, not an intellectual one. Just because she can’t walk or talk does that mean that she can’t think for herself, it must be hell for her to be locked inside this body, and if she can think for herself then she must be screaming inside! I can imagine she must feel like when people talk about her, it’s as though she is not in the room-I know someone who has a brother with multiple sclerosis, sometimes his body is rigid and he cannot move, and sometimes his body turns to mush-But not his brain, his brain keeps going, thought process still occurs. He is frustrated though because he is unable to express it, he’s a very intelligent man-but cannot speak. That aside- by taking her womanhood from her, dear old mum would be putting her daughter at risk for certain cancers that are very difficult to fight. And if Katie could think for herself, what would she want???

  199. "What noble intentions?" – I shall try to elaborate. This young woman, I am assuming, stands no chance of ever having a family of her own. Please note that point: I am ASSUMING. I may well be wrong, but we have to assume one way or the other, so let’s assume I’m right, just for the sake of the debate.
    Therefore her parents/guardians must assume the responsibility of caring for her and making big decisions for her, in a way she cannot be expected to do for herself. That’s the crux of my argumemt – delegation of responsibility. In this case, assuming the woman can have no meaningful use of her menstrual functions, but can only suffer the physical pain therefrom, then in this specific case, the crucial factor is, how can she be spared the unnecessary pain of this biological factor from which she can derive no real use?
    That is the context in which I say that this decision can be looked upon favourably, in this specific case.

  200. Well Tom If she stops growing in height, then she may put on weight, so lets staple her stomach incase that happens and she cant be lifted. and most likely she cant clean her teeth, she isn’t worried about appearance, is she, they may get sore or rot, so lets take them out too. Where do you stop. Is this to benefit the girl, or those looking after her?

    And what of your agreement with scope?

  201. And what about the noble intention of the disabled living as normal a life as possible. Throw that out to? If the parents can’t cope because she is growing up, menstrating and developing breasts, let them give her to social services, at least they won’t put her under the knife.

  202. Anyway, thanks for your lively arguments, Typhoo. I Have to admit, I think I was wrong about you a few weeks ago. It was me who accused you of sabotaging this site, rather than Mahons, and in the light of the last two weeks, I now think I was completely wrong about that. I apologise and I retract my suspicions. I got it totally wrong.

  203. According to davids post its the on set of woman hood, its in the link too, so it hasn’t come yet, so how do they know she is to suffer. She may not.

  204. The mother of a profoundly disabled child must, at the end of the day, do what she feels is best for the child. Many adults have menstrual cycles that are monstrous BUT we know what’s happening organically and why. This child will never comprehend why she is in such pain, or angry, or nauseous or tearful. We should not know her identity, but I’m with Mom on this one.

  205. Deezyfosheezy,

    Thank you My daughter has Rett Syndrome http://www.rettsyndrome.org if you want to learn more about this disease that affects only girls for the most part. To quote you "It must be hell for her to be locked inside this body, and if she can think for herself then she must be screaming inside! I can imagine she must feel like when people talk about her, it’s as though she is not in the room" This brings tears to my eyes only because I know you understand. I get emotional when I hear news of stories worldwide that affect girls like my daughter. I hear of earthquakes, floods, genocide, or any natural disaster; I know their are girls with Rett Syndrome there suffering, even if they are in a hot place with no air-conditioning; suffering. They understand everything; they can not communicate because the disease affects the muscles; and the tongue is a muscle. They can not point; however they can use eye gaze’ and will make decisions if only given the chance. However don’t feel sorry; that is not what they want.They are happy don’t project your sorrow on them; or persons like them; for they are happy, and joyous. My daughter did not have any intervention with her cycle; it was considered; but the side effects were worse than the cycle ie. bone/calcium loss. She is 21 now and happy. She cries more from pain when she is constipated than when she is on her cycle. God knows what he is doing. Read my earlier comment if that throws you off. I tend to side with the Mom is this saga. No matter what; I may not have had the same prefernce; but everything will be ok. Miracles come in indescrible packages.

  206. Leave her reproductive organs in tact. Menaupause at 15 will be much worse than puberty.

    A wiser move will be to make note of her menstration calendar and set up care accordingly, by giving her anti-bloat medications, making sure she drinks plenty of water, gets lots of rest, have warm compresses handy if you think she has any discomfort in the abdomen or back… you know, things every woman has to do to manage negative aspects of her period, and things that I’m sure lots of other caregivers have to do for the cared for. I sympathize with the situation, but strongly disagree that this is an ethical solution.
    She may have a differently developed brain but that doesn’t mean her body should suffer too.

  207. I have dipped in and out of the comments posted and find a mix of emotions welling up inside me. I know Katie and her mother very well and find it hard reading that people could even insinutate that her mother has maunchausens. The family have agonised over this decision for over 2 years and have debated and researched this with family, friends and medical professionals. I understand how people are appalled by the nature of this operation but the decision has been made with Katie’s best interests at heart. I would like to point out to you all that Alison (her mother) did not bring this to the media, the media sort her out. In fact, Alison was unaware that the consultant had agreed to do the operation and had passed it on to lawyers. The first she heard about it was when the media contacted her.
    I would also like to highlight that Katie’s life expectancy is actually shorter than the average and she is expected to live to between 25 and 30 partially due to medical complications associated with CP e.g. postioning and movement of organs, repeated chest infections amongst others.
    As her mother, Alison has already had to make decisions on Katies behalf for non-essential surgery that has been recommended by doctors to improve her level of discomfort e.g. gastrostomy feeding tube, teeth cleaned or removed, feet straightened etc. None of these operations are essential and have been performed on Katie and thousands of children like Katie for purely comfort reasons. This is just another example. Katie is never going to have children unless she is sexually abused. She has very little understanding and usually only reponds to people that she knows well using learnt responses.
    I read that someone posed the question about having her tubes tied as an alternative. It is my understanding that would not stop her periods, only the egg from reaching the womb. Katie is totally imobile and can only move her head independently thereby ruling out the contraceptive pill or injections as there is a high risk of DVT.
    Her parents are merely trying to make Katie as comfortable as possible so that she can enjoy her short life to the full. What may be right for one child is not necessarily for another, and her mother is by no means saying that all severely disabled girls should have a hystorectomy. Infact she isn’t even requesting that this should happen next week. She has requested that when Katie starts her periods then she should have a hystorectomy. However, if she never starts, which is quite possible given the severity of her disability then she will never undergo the operation.

  208. Just popped back to this and im glad I did now to read this.

    I am so sorry you had to read some of what you have Blighty and im not surprised you feel the emotions you do. This is exactly what worried me at the off and i feel horribly guilty myself for playing any part in this now whatsoever. It feels like voyeurism.

    I cannot abide witch hunts which is exactly what this turned into.

    I expected that someone might know the family and come across this post as this has happened previously here on ATW and have to say i had an uneasy feeling about all of this. We have no right to judge her, her family or this complex situation.

    I wish Alison and Katie all the very best during what must be an incredible ordeal for them and im incredibly sorry about my part in this thread.

  209. Ill add that I accept there is a right to free speech JM but on such a sensitive personal issue like this I think levelling accusations about someone in these situations is always risky and we could at least debate the issues without speculating about the family motives or their character.

  210. Everybody has a right to an opinion and is entitled to voice it. It’s healthy to debate and hightlights issues that need to be discussed or reviewed.

    However what this whole debate has shown me is that is easy to make assumptions about people that you do not know and second guess their actions, but unless you are directly involved with the situation you will never know all the facts. Without all the facts how can you possibly debate the case fairly? I know I’m going to think twice about the way I make snap judgements about people in the media spotlight, like the case of the McCanns for example.

    I haven’t taken offence by what has been written here but I think it’s interesting how we all get sucked in and behave in a way that we would hope we would never be treated ourselves.

  211. Blighty,

    Thanks for that contribution. As Alison says, we all wish the family the very best.

    On the broader thread, I think there have been some excellent points made on the topic, and that is good as it helps inform. The nature of the internet is that discussions do free-wheel and sometimes that is to the good and sometimes to the detriment of the topic. But I stand by this thread and the mix of comments – we all have the right to take a view. We have, of course, no right to judge.

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