Sarah-Kate Templeton, Health Editor
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Every year Alison Thorpe sees her daughter’s life getting tougher. A victim of severe cerebral palsy, the 15-year-old is too big for pastimes that used to bring her joy.
Katie, who was born with the condition, used to adore horse-riding, says her mother. “Her face shone and she giggled in excitement. Now she’s too big to be lifted onto a horse. We regularly took her to theme parks such as Legoland, which she loved. She has outgrown the rides.”
It was these moments that also brought joy to the family, giving some solace from the round-the-clock care needed for a child who cannot walk or talk and understands little of what is said to her.
Now her mother is anxious that, at the same time as these childhood pastimes are being denied to her, she is also facing the onset of adulthood. Thorpe, 45, believes that for Katie the physical changes that accompany adolescence will bring only distress, with none of the rewards other girls can expect from growing up.
Knowing she has no prospect of having a child, Thorpe has asked surgeons to remove her daughter’s womb, sparing her the discomfort and inconvenience of menstruation. After a recent consultation with Phil Robarts, a consultant gynaecologist at St John’s hospital in Chelmsford, Essex, doctors have accepted Thorpe’s argument and have requested legal approval to carry out the controversial surgery.
“I think we could make a good case,” Robarts said. “I have run it by a couple of my colleagues, just to see if they feel the same way as I do. They agree that, in this situation, it is probably not an unreasonable thing to contemplate doing.”
The surgeon previously suggested Katie be given a contraceptive pill or injections to stop her menstruating, but Thorpe believes the drugs could cause health problems. Thorpe has also asked surgeons to remove her daughter’s appendix, to prevent her suffering appendicitis. Thorpe says Katie would be unable to explain early symptoms of the emergency and run the risk of her appendix bursting.
Doctors are now consulting lawyers to check they have sufficient consent to carry out the surgery on Katie. As she has profound learning disabilities, she is unable to give consent herself. Her mother is giving consent on her daughter's behalf but, given that some doctors may argue that the surgery is not in the best interests of the child, surgeons want to secure a legal opinion confirming they are justified in carrying out the surgery.
While some doctors will argue the operation would relieve suffering, others may say that women should not have their ability to have children taken away, regardless of how disabled they are and whether they are deemed capable of consenting to sex.
Every day Thorpe, who is separated from Katie’s father and lives with her boyfriend, who helps look after the girl, has to dress, wash and feed her daughter, who is doubly incontinent. “We already have to do everyday things for Katie that most people do for themselves,” said Thorpe. “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.
“Katie would be totally confused by menstruation. She could not manage it by herself.
She could not keep it discreet, she cannot be private. What we need to do for Katie already is undignified enough.”
Her decision to go ahead with surgery mirrors that of a case in America where doctors carried out a series of operations on a nine-year-old girl, now known around the world as Ashley X, to prevent her from growing up. Doctors also performed a hysterectomy to spare Ashley the discomfort of monthly periods and removed her breast buds to avoid the development of breasts.
Her parents said: “Ashley will be a lot more physically comfortable, free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around. Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.”
The treatments, which would not be carried out on able-bodied people, are provoking a huge ethical debate. Even some disabled campaigners are critical of them, saying we should focus instead on making society more accommodating to people with disabilities and offer more help to their carers. They say that, if successful, this would remove the need for such drastic surgery.
Gary Birkenhead, head of the programme development unit at Scope, the disability charity, said parents were in a strong position to know what was best for their own children, but he believed such drastic surgery went against the human rights of disabled people. “It is tough bringing up a disabled child but that is not a reason to have to go to these lengths. We should tackle society to make it more inclusive of disabled people,” he said.
The parents of disabled children, however, point out that such critics are out of touch with the reality of caring for someone with severe disabilities. “They see these children in their surgeries for a few minutes at a time,” said Thorpe. “But they don’t live with children like Katie, they do not live with them on a daily, hourly basis. They don’t have to do as I, and other parents like me, have to do just to give their child an existence.”
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Unfortunately if the parents think this who is to stop themKatie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her" It is wrong but If it helps the future It seems reasonable....
Cameron , Warren , USA
To Orla,
I'm slightly offended that you'd claim that ownership of a womb is vital for womanhood. It's not even vital for motherhood! A person's physiology does not define them. A woman missing a uterus, clitoris, cervix, breasts, whatever, is still as much a woman as the rest of us.
Also, these aren't cosmetic operations. It may not be medically necessary, but it is pragmatic. Removal of the appendix, I should think, would be an entirely clever move. Thorpe is quite right to suggest that the organ should be pre-emptively removed, and I applaud her foresight. I'm also in favour of the hysterectomy, because it does appear to be in this girl's best interest. The question isn't 'why is society so horrible that this disabled girl is maligned', but 'why should this girl, who would likely only conceive a child through rape, be forced to menstruate when the function would distress and confuse her, and cause her indignity?' I admire Thorpe; it must have been so hard to make that decision.
Damiya, Sydney, Australia
The 'feminist lobby' is surely equally ashamed of you, Jane.
Jess, A Better World,
I can seriously understand the mother's concern with trying to prevent future problems with her disabled child. As a father of a 5 year - old severely disabled boy, my wife and I are not only concerned about his daily care, but also of his future problems.
This situation is not as easy to judge as you think. Imagine that you are hurting you are not exactly why or where, you cannot use your hands and you cannot speak. How do your parents and caretakers know that your appendix has just burst? Your parents realize that all your crying for the last 3 days was not from your new formula. You die a horrible and painful death that could have been pro actively treated by a removal of this useless organ a year earlier.
You don't always know what is going on with a child who cannot speak. You can guess. You guess wrong for too long and you could seriously hurt or even kill your child. That is not time for regret.
Rick , Melrose, USA/ Massachusetts
As a intellectual disability trained nurse, I am really appalled at how people can consider to remove organs that although may not be "in use" are vital nonetheless for womanhood! It seems that the benifits of this procedure will reduce the mothers caregiving burden but as rightly put in this article, why do we change the person, surely is it not the macrosystem that we should be changing. It is not clear that there are advantages of such a procedure besides the girl not developing as a "normal" woman being a so called advantage. Rights and ethics have a huge part in this but what about nature, how much will people change. Another article by Templeton on the 24 oct talks about people having abortions up until birth for minor disabilities in the expected child! How far will we go? plus transitions in our lives such as adolescence and puberty make us more resilient. Finally why do we as a nation not accept human beings, intellectual disability or not, without having to change them
Orla, dublin, Ireland
Okay, Everybody! Say it with me: Eugenics!
If this Nut of a mother is worried about the 'trauma' of menstruation (which is probably HER trauma, not the daughter's), what kind of trauma would this young woman endure undergoing surgery? There's something seriously wrong here and I'm amazed that this isn't considered abuse.
Kyle, Lansing, MI
i completely agree with the mum- as the carer of a completely discbled child she is living the child's life day in and day out. she must have the option- no one else has the right to say
shi, india, india
i totally agree with john from preston , i too was amazed that the guy from scope said he could see no benefit for this girl having the operation - anyone in their right minds can see this girl would hugely benefit - isnt it obvious? why add to this girls discomfort when something simple could improve her quality of life.
Her parents are doing what is right for their child , as she is unable to make that decision for herself , i do not understand anyone who would not support the parents actions
S, london,
The new UN Convention on the RIghts of People with Disabilities that the UK Government signed in March '07 is very specific in saying that sterilisation and similar procedures are a contravention of rights. Mrs. Thorpe is using the same arguments as Ashley X's parents and it their veiwpoint is understandable - but Katie is growing into an adult and whatever her understanding of that process she should be allowed to experience adolescence as best she can. Sterilisation will not impede her growth. An early menopause carries just as many dangers as having hormone treatment while sitting in a wheelchair. But all these arguments are really irrelevant beside the fact that Katie is a human being and has much right to choice and control over what happens to her as any one else. If her mother considers her to be unable to make choices - why does she say that she likes certain things and not others? I speak as a wheelchair using woman and a strong advocate for our rights.
Hurst, Wiltshire,
As a disabled woman I find this story very disturbing as I thought this attitude disappeared thirty years ago. Should they remove the gonads of disabled men cause they probably won't cope with the hormonal changes of puberty. Society needs look more closely at its abhorrence of the possible sexuality of disabled people and come up with alternative solutions to surgery.
Patsy Wakefield, dUNEDIN, New Zealand
I'm surprised that horse riding should not be available, whatever the weight of the individual. Contact the national charity Riding For The Disabled for information.
Jane Russell, Rugeley, Staffs
The spokespeople of SCOPE may or may not have own disabled family members. What is wong with saying loud and clear that a society should think very, VERY careful and consider more than one part of a story before removing essential, life-long working organs from a 15 year old person(or even worse, a 9 -year old)? Where does caring for a disabled family member stop and where begins the "it is just easier to move her without full-grown breasts when changing the bed clothes" -part ?
Luise Krahmer, Eindhoven, The Netherlands
I believe that anything that can ease the suffering of any disabled person should go ahead, do gooders who talk about rights usually have very little actual knowledge of caring for anyone else, and do not have to feel the suffering of the disabled person. Being a parent, and well aware of the need to fight every step of the way for your child. Decisions at this level are not taken lightly and other options hve been considered. Parents of disabled persons should be supported. not made to feel guilty.
sandra davies, chester, England
No-one has the right to deny this child comfort and happiness, and to make her suffer from incomprehensible pain , discomfort and embarrassment I am tashamed to be of the same sex as the 'feminist lobby'. I do this much for my female cats, for their sake, not mine - should I do less for another of my own species?
Jane Russell Staffordshire
Jane Russell, Rugeley, Staffs