Right to decide
It has been all over the recently about Katie, who has severe cerebral palsy (CP). Her mother is trying to get permission for her to undergo a hysterectomy. To stop her daughter from undergoing the embarrassment and possible pain caused by menstruation.
This has divided opinions between both people with and without disabilities as well as the general public. It is said that doctors are also divided, and there is great concern that Britton will be in a similar situation to that of Ashley X in America. I have to also say my own personal opinion is to an extent divided, and that in this blog I am not trying to say necessarily that my view is the right one; it鈥檚 just the way I think.
I do not think it is right to perform a hysterectomy on a person where it is not for medical reasons that will severely damage a person鈥檚 life.
In this case from what I have read in the media I do not think it is right. To start with Katie has not had a period yet and her parents are looking in to this option because of fear of embarrassment, but is that on there part or that of there severely disabled daughter. Is it also not slightly embarrassing for complete strangers to see your nether regions before/during/after surgery?
Her mother also fears that her child will be in pain during her period. Let鈥檚 face it for most women period pain is something they have to put up with throughout life and usually dose not have a huge impact upon a person鈥檚 quality of life. Further more it is probably more painful for a person to have a hysterectomy than it is to have a period once a month. The stress caused to Katie during her time in hospital and before and after surgery is another concern, nobody likes hospitals. The recovery period for the operation includes 5 days in hospital and about 6-8 weeks recovering at home. (If you want to read all the gory details you can do so courtesy of the ).
I think there are also huge ethical and moral considerations to think about, it clearly states that many women feel depressed after the surgery. Another issue I have is that this is not Katie鈥檚 own decision it is that of her mother, from the way the media portrays the situation it would appear Katie is unable to communicate her wishes, quite frankly there could be a voice screaming inside her head shouting 鈥渄on鈥檛 let them do it!鈥 but there is no way of knowing. I also see this activity as destroying the course of nature and in away removing Katie鈥檚 femininity, what makes her a woman.
However I can also see this situation from another point of view, that which reflects the delicate nature of a woman鈥檚 menstrual status, I no for a fact that I would not like it if I needed help with 鈥榯oilet stuff鈥, and I do also understand that it could add another challenge to parents that are already struggling to cope with there severely disabled daughter, I do wonder what support is available for people caring for young people who may be going though puberty.
It makes you wonder when people start discussing this sort of thing where it is all going to stop. Is the next thing going to be the removal of men鈥檚 testicals to stop them having unwanted ejaculations?
If we look back into history this sort of thing has happened before, for different reasons. For example people with disabilities where sterilised during Hitler鈥檚 rule over Germany, before full scale killing was established in the form of the NAZI euthanasia programme (also known as T4)
I have to finish by saying that I actually am slightly disturbed by the thought of removing a woman鈥檚 uterus purely to stop that person having a period, and I sincerely hope it dose not become common practice.
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Comments
I agree fully with what you are saying here Jemma and yes things are not as black and white as might first appear.
This is a post on that aspect of the debate I have just added to the various discussions about katie on the main Ouch Talk board:
General Discussion:
/dna/mbouch/F2322273?thread=4653950
DAN Campaign: /dna/mbouch/F2322273?thread=4660163
I fully understand and sympathise with the feelings everyone has expressed so far but, just one word of caution. We all might want to be a little more careful about how we discuss this very sensitive and emotive issue.
As I understand it from all the reports so far, all that has happened is a request has been made by the Katie鈥檚 mother for this surgery to be considered, and the doctors involved in her care, being fully aware of the obvious ethical, moral and legal implications of this request, have rightly confirmed they are seeking advice before responding to the request one way or the other.
This is, of course, a long way from Katie being in imminent danger of the unwarranted and unnecessary forced removal of her womb against her expressed will.
As I said earlier, things are never as clear cut as some would make out and this is a sensitive issue and so requires sensitive rather than emotive handling if any campaign is not to backfire on Katie. So perhaps a little restraint by everyone not directly involved in the case might be in order right now, at least until the full facts are known.
Yes there are broader disability issues raised by this specific case, but the issue here is not just about Katie having the right to say 鈥淣o鈥. It is equally about her right to say 鈥淵es鈥, regardless of if it involves an elective or life saving procedure the same principle should apply.
Should I eventually lose the capacity / ability to give express consent to any treatments that might help me and which, but for that incapacity I would have requested for myself, I personally want my next of kin to be able to have the right to ask for such procedures to be undertaken on my behalf.
This is clearly one of those issues where each case has to be considered on its own individual merits. I would not, however, want others not directly concerned with me to have a right to veto any such decision I might have reasonably wanted made on my behalf by others simply because they themselves do not approve.
Clearly in all such situations protections need to be in place to protect people from any abuse of the rights outlined, but incapacity should not, of itself, rob an individual of the right to have such procedures at all and under any circumstances.
As I indicated before, I suspect that what will come of this is that the right to have a request considered will be confirmed, but that they might very well correctly decide that, in this specific case, the treatment requested can not be justified right now.
We of course have a right to express opinions about the general principles involved here, but I do not believe it is for us, or indeed the general public, to decide what should happen in this specific case but that this must and should be down to only those directly involved with the case and fully aware of the Katie鈥檚 actually situation rather than speculation as to her situation.
Anyway that鈥檚 my 2 cents for what its worth.
yes peter i think what you have said on the issue is very correct.
i meant to also make the point of who are we to judge as we are not in the full possession of all the facts, nor do we, as individuals no weather some things portrayed by the media are accurate.
it is a very sensitive issue and i think it is important to share are views but in away that is not detrimental to any individual.
Many thanks Jemma and if I had not made it absolutely clear before I think your own comments on the issue were entirely appropriate too.
For those following the wider debate/discussion in the media it is also worth checking out a very informative discussion of the ethics involved by Medical ethicist Daniel Sokol entitled, 'Wait and see the best approach' which is well worth a read if you have the time.
My 2 pennies worth is this. I feel it is a human rights/abuse issue. None of us know the full facts but i saw the mother on the news yesterday and she was on her own. Katie or a representative for katie wasnt there. She said her concern was purely that it was a health and pain issue for her daughter but her words and body language suggested that her daughter having a period was an issue for her and she just didnt want to deal with it. She even used the word toil to describe her daughters disability which i found very inappropriate. I hope what ive said has made sense but i have lots of thoughts and feelings on this issue and i was trying to get them all out at once.
natasha, i hear what you are saying to, it is an issue of human rights, im particularly intrested in what happens and the public oppinion regarding the desision.
i expect this case will go down in the history books along with the ashley X case, no doubt it will pop up during my human rights degree
I posted twice on the original debate on Ouch
Last night I was chatting to my father about this issue , as one of the older generation (60+) he was initially pro this steriliation . However when i told him that nobody knew whether this girl could communicate because they hadn't tried communication aids etc. and told him about the technology, he changed his mind -
How many others are forming strong views on this because they don't realise that there are communication aids for severely disabled people ?
there is a serious lack of knowledge on these issues , and too many people take an issue on first appearances ofa person
I think it is wrong for the mother of this child to impose her views that the child has to have a hystoremory to make her life easier! Doesn't the child have a right or say in the matter?
Several of us have mentioned communication aids, both on Ouch, and the Have Your Say page on the 成人论坛.
We're trying to raise awareness, but if people won't see or understand...
There are two issues here I feel:
a. The first is the child needs to be involved in the decision. It doesn't matter that she has CP. The real issue is that someone is making the decision for her. "Does he take sugar?"and all that.
b.Everyone has a right to make decisions for themselves. I'm in the situation where I might father a child with a disability.....does that mean I ought to be sterilised? Where does it all stop.
I'm sure that the mother is trying to do what's right for her child and I do feel slightly sorry for her because I think in this case she will be seen in a bad light. I'm sure parents make decisions about their children's lives all the time and it never gets mentioned. Could this be the tip of the iceberg???