I think this is a lot more acceptable and less frightening than that "Ashley treatment" that one set of parents were after for their severely disabled daughter, Ashley... which involved not just hysterectomy but also removal of her breast buds and keeping her growth suppressed so that she was small and light and could lie on her front easily etc. I found that excessive and really worrying, and I am concerned that more reasonable cases like this might open the door to Ashley treatments.

Posted by: Alex | October 8, 2007 3:00 PM

I am a woman and have been severely disabled since birth. It is my experience that both the medical profession and society at large are willing to advocate elective procedures for the disabled which are unadvised for non-disabled people. It is the burden of the person with a disability to prove their right to use their body as it is, particularly their sexuality.

I am profoundly grateful that I am able to communicate, and therefore able to protect my rights as a member of society.
It is quite clear that we cannot accurately judge the mental capacity, or the ability to comprehend the circumstances of their existence, of someone who cannot speak. Does this erase their humanity? Shall we spay and neuter those in our care?

If the right to experience the pleasures and pains of adulthood is to be earned through an exhibit of mental capacity I deeply fear for the future of my species.

Posted by: altaira | October 8, 2007 3:29 PM

The frightening thing is a hysterectomy is not the only way to sterilize someone... but yet this is what they jump to. Hysterectomies are a difficult procedure, especially for a 15 year old girl. She'd have to be on hormones for the rest of her life! My mom had one about 10 years ago, and she has to take hormone pills everyday. I'm shocked they aren't considering getting her tubes tied instead. I guess if you're going to strip away someone's reproductive rights, you better make sure you do it right.

This does ring the bells 100% of the way eugenics was practice in the United States. People who were mentally ill - or perceived to be - were sterilized regardless of parental consent. If they needed parental consent, it was never obtained legally or truthfully.

I'd be shocked if any legitimate expert in gynecology or pediatrics would condone performing a hysterectomy on a 15 year old girl simply so she doesn't have children. That's so ridiculous and pointless, I can't even wrap my head around it.

Posted by: Liz | October 8, 2007 4:34 PM

I know Katie and I know the demands and care needs she has. My son is profoundly disabled too. I wish people would stop judging on something about which they have no understanding. As parents it is no mean feat caring for a severely disabled person 24 hours a day 7 days a week, 365 days a year especially when a "normal" 15 year old would be able to stay at home alone, go shopping with her friends and deal with all her personal care herself.

Katie cannot do this, she has the indignity of having to allow strangers to perform intimate care taks. Many of us would baulk at the thought of someone wiping our bottom let alone anything else. Periods are painful, not called "the curse" for nothing, plus they cause bloating and stomach cramps etc. Katie cannot tell anyone how she is feeling and would therefore suffer in silence. It would not be fair to give medication, isn't that against her human right as much as a hysterectomy! She cannot consent to that let alone sex, so she will never have a baby unless she suffered the idignity of abuse and a baby would be the worst result of that.

Our youngsters have the indignity of behaving like children and having needs of a baby but the body of an adult. Our society cannot cope with disabled adults as well as they do children (even they are stared at, and people like to give conscience money to special needs children).

I think that anything that benefits the disabled person's quality of life and allows them to be comfortable and have their care needs met sensitively and compassionately is more important than any politically correct do gooders who have not a clue (nor would want one) as to the complex needs of a person like Katie. I know Alison is extremely committed to Katie and is doing this for Katie not for herself...the biggest worry we have about our children is what happens when we can't care any longer, and the fear of abuse as well as the other physical and emotional needs they have. At least this would be one thing that future caregivers would not need to worry about or deal with and that Katie will be comfortable if someone forgets....believe me we have to put an enormous trust in strangers and the care needs of our children are not always met as well as they should be. Our children do not have voices to tell us what goes on.

Think before you judge and maybe visit some youngsters like Katie who have no voice and can do nothing for themselves, not even play. Perhaps you could volunteer and give their parents a break?

Posted by: Sally Walburn | October 8, 2007 4:47 PM

"Think before you judge and maybe visit some youngsters like Katie who have no voice and can do nothing for themselves, not even play. Perhaps you could volunteer and give their parents a break?"

I wouldn't count on it anytime in the near future. People like to open their mouths as long as it does'nt cost them anything. For all it's worth, this mother of a three year old normal daughter supports Katie's mom 100 percent. How dare anyone who has never been in her place judge? I read Ms. Thorpe's comment that if she just wanted to make it easy on herself, she could have institutionalized Katie long ago. Indeed. Leave her alone!

Posted by: Peggy McCann | October 8, 2007 8:38 PM

I agree with Alison Thorpe i have a daughter who has spastic quadriplegia and unless someone is caring or has cared for a disabled child they have no idea how hard it is looking after the child day to day let alone having to make major discions for that child and are unable to judge the parents on what they decide. Good luck Alison and katie.

Posted by: karen Haigh | October 8, 2007 8:51 PM

Please understand I don't think anyone here is slamming Alison. It is the all to real abuse that has happen. Sadly cases, which should be taken on individual bases, aren't. The compulsory sterilization programs of the 20th Century did happen and it was horrible, I could go on, but we are not talking about me. Just the knee jerk reaction to the past and the misuse/abuse that can REALLY happen.

So, forgive us our fears and know that most of us have no desire to hurt or cause anyone pain.

May God bless you and keep you all!

Posted by: Karen Flagg | October 8, 2007 10:32 PM

As a disabled woman I am intimately aware of the indignities of daily care mentioned above. This is part of my life. And I enjoy my life. Not because I can communicate. Not because I can impress others with my cognitive abilities. Not because I have learned to use my body to it's limited ability.

I enjoy life because it is mine to live. You know that wonderful feeling that you have first thing in the morning, when you stretch, and wiggle your toes, and it feels good to be alive? I have that too. My disability does not change the experience of the quality of my life.

Why does this matter? Because for me, like every other woman on earth, my menstruation is part of that experience of life. I am a mammal, I am human. I bleed. Whether or not I reproduce, my womb, and it's effect on my body as a whole, are part of my life experience. I do not remove my legs because I will never walk.

I'm told that because I am not the mother of a severely disabled child like Katie, I cannot judge Alison's decision.

In turn, because Alison has never been a severely disabled girl whose uterus is removed, she cannot judge the effect of hysterectomy on her daughter. By her logic, the uterus is only used for reproduction, and is a source of discomfort for all women. She is past child-bearing age. Let her have the elective hysterectomy first, so that she may judge from experience for her daughter.

Posted by: altaira | October 9, 2007 7:59 AM

I can't imagine how immensely difficult it must be for the Thorpes to take care of such a profoundly mentally and physically disabled daughter who will not recover and not enjoy the quality of life to the extent of other people. I also don't feel we have any right to criticise them for taking care of their daughter and trying to do what is best to look after her and ensure she has a comfortable existence. Menstruation is not a pleasant thing, no one enjoys it even when they do understand what it is. Why should the poor girl have to suffer it just because she had the misfortune to be born female? She's not being robbed of anything, she'll not have children and she won't mature into a young woman in the fullest sense. This is a case about one girl that is having an agenda pushed on it by disabled groups and politics.

I also note none of the critics of the Thorpes - here and elsewhere - have offered to help care for their daughter.

Posted by: Camilla | October 9, 2007 4:54 PM

I came accross this site because I am doing a round up of cooments in the blogosphere and I am a bit disturbed by some of the comments. I agree with altaira, who is more then qualified to give her opinion. In someone who is non-verbal with CP, it is difficult for an accurate assessment to be made as to cognitive ability. Just look at the story of Anne McDonald for how the medical profession gets it wrong. And most of the cognitive tests rely upon fine motor skills in order to undertake them. No-one has the right to make this decision for the young lady. Not even her Mom.

For the record, I am the parent of a severely disabled child.

Posted by: Jacqui | October 10, 2007 5:21 AM

I am the father of two disabled children. One who can make her own decisions , one because he is Autistic can't. What we do for our son we do out of love. What this mother is doing is exactly the same. We have no right to judge her as she has no doubt thought this through long and hard, probably for many years. She will not be happy or relieved when this operation happens. She will be racked with guilt but she is doing what she feels right because of love. Leave her alone.

Posted by: Rob Hann | October 10, 2007 1:22 PM