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Does Katie has adequate support?

Article 1

This draws on my doctoral research on the ways that disability and disabled people are represented in the British press. I have conducted focus groups with disabled and non-disabled people and individual interviews with disabled and non-disabled journalists.

In this blog I focus on the story of Katie Thorpe, a teenager who has severe Cerebral Palsy which affects her both physically and intellectually. In 2007, Katie’s story stirred controversy in Britain. What I am interested in most is how the British press represented Katie’s story in strikingly different ways.

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Katie Thorpe

One newspaper article about Katie Thorpe began with the headline: ‘I want my girl to have the “Ashley Treatment.”’ Ashley X was a severely disabled child in the United States whose parents wanted doctors to give her oestrogen therapy to prevent her from growing so that it would be easier to care for her. In this newspaper article, Katie Thorpe’s mother, Alison, built on the Ashley X case by arguing that her daughter, Katie, should have a hysterectomy as she would not be able to understand menstruation nor to cope with the discomfort it can cause. Alison also criticised the professionals and ethicists charged with making the ultimate decision about the hysterectomy in the article. Caroline Davis, the article’s author, wrote that Katie Thorpe’s mother said:

“She was fighting for her daughter to have a hysterectomy. She criticised “so-called professionals” and ethicists who made crucial decisions from comfortable offices far away from the reality of living daily with a severely disabled child.”

Davis portrays Katie’s family as victims because they have to care for Katie. She quotes Alison as saying, about Katie:

“She is unable to do anything for herself at all, which includes feeding, she is doubly incontinent, she is unable to sit up. I think of myself as Katie’s mum first and her carer second, but that does become very difficult and muddled at times and it’s very, very hard to be a mum when you have to do the sort of things to your teenage daughter that I have to do on a daily basis.”

Personally, I feel Katie’s mother capitalised on the opportunity to be so public about what she and her partner have to do for her daughter. It must certainly be very difficult to care for a severely disabled child. However, there are many other parents in similar situations who manage these challenges without publicising them.

Davis also cites Katie’s mother’s opinion on why she thinks medical intervention is justified for her daughter:

“I think medical intervention can be justified if the child can be given an increased chance of enjoying the life they have…If that person is enjoying her life then I think it shouldn’t be for us to intervene just because someone is sitting on high morals in a hospital a long way from what is really happening.”

Katie’s mother seems very adamant about what she believes is best for Katie. She wants to be in control over Katie’s life. She may find it difficult to accept help from others.

In her article, Davis uses a quote from an interview on BBC Radio 4, in which Katie’s

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Ashley X

mother heavily criticised the professionals who had made comments about Ashley X:

Listening to the reactions from consultants and so-called professionals in the UK I’m afraid just makes me extraordinarily angry…I have to say I really don’t think they have a clue. Yes, they see these children in their surgeries for a few minutes at a time. 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 many other parents like me have to just to give their child an existence.

Here, Katie’s mother is criticising paediatricians who have extensive knowledge about Cerebral Palsy. Some will have empathy for the parent and child. Katie’s mother seems to be criticising them because she is not getting what she wants from them.

Caroline Davis also interviewed Peter Reynolds, who is the partner of Katie’s mother. Peter told her that Katie’s mother could not manage to care for Katie on her own:

“If I wasn’t there, Alison couldn’t cope on her own. Katie has just got so big and heavy…The carers who come here are not allowed to lift unless there are two of them. We have a hoist, but it is broken.”

Peter Reynolds seems to emphasise with Katie’s problems. It is also clear that Katie and her family are not receiving appropriate support. The article leaves me wondering if they have asked for the help they need as there should be no reason for the family to have a broken hoist.

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Should parents be able to make life changing decisions for their children?

Why I Want Surgeons to Remove My Daughter’s Womb

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The headline for the second newspaper story I will discuss read as follows: ‘Why I want surgeons to remove my daughter’s womb.’ The story explained that a consultant surgeon had backed Mrs Thorpe’s request for Katie to have a hysterectomy. In this article, the journalist, Andrew Levy, wrote that if the surgery went ahead it would be the first time this procedure was carried out in the UK without the patient’s consent. He explained some of the details of Katie’s life in the article and why her mother believes Katie should have a hysterectomy. The article quotes Katie’s mother as saying:

“She [Katie] is doubly incontinent and going through menstruation would only add to her discomfort. She is never going to develop and be a normal adult with the expectation of getting married and having children. She is my daughter and of course there are doubts. But I feel in the short-term the inconvenience she will go through is nothing compared to the enormous long-term gain.”6a00e54ed3f137883300e54fe39f358833-800wi

Levy explains that when Katie’s mother first approached the consultant surgeon about a hysterectomy for her daughter, the surgeon recommended the contraception pill or injection instead. Katie’s mother rejected this suggestion because she was worried about possible medical complications. On her second visit, the consultant agreed to the request for the hysterectomy.

Levy also wrote that on a different occasion Katie’s mother had requested Katie’s appendix to be removed, claiming that Katie would not be able to report the early symptoms of appendicitis. Thus, Katie’s mother seems to envisage that Katie will experience additional medical problems in her life. Levy includes the opinion of the consultant surgeon referred to in the article, who said:

“I think the girl’s mother makes a very cogent argument for proceeding with that course of action,
albeit it is rather drastic.”

Levy also includes the opinion of Scope, a leading UK charity for people with Cerebral Palsy. Andy Rickell, a spokesperson for the charity, argued that society should accommodate the needs of disabled people. He said:

“It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very traumatic, can be in Katie’s best interests.”

A different perspective

An Unkind Cut: Why Katie Thorpe Should Not Have a Hysterectomy

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The third and final newspaper story I compare in this chapter began with the headline: ‘An unkind cut: Why Katie Thorpe should not have a hysterectomy.’ This article was written by Kate Ansell who also has Cerebral Palsy. Ansell articulates why she thinks Katie Thorpe should not have a hysterectomy. She explains that no two people with Cerebral Palsy are the same:

“No two people who suffer from Cerebral Palsy have identical experiences. The first thing people tend to notice about me is that I walk with a stick and talk with a lisp.”

Ansell’s Cerebral Palsy seems to be very mild. In her story, she recalls how she coped with menstruation at university. She writes:

“I was having more difficulty walking than usual, and I couldn’t get to the launderette. I lived in student accommodation so it was arranged that while I was recovering, the university cleaning staff would do…[my washing] for me…Then one day the college nurse popped round to tell me there was a problem.”

Ansell continued, explaining that on that same week she was taking medication and had a heavy menstruation. The cleaning staff would not launder her bed linen. She explained:

“The cleaning staff, I was told, “wouldn’t deal” with bloodstained laundry so I was asked if I could “do that [bit myself].” It was an interesting request considering I had extremely limited stamina and no access to washing facilities.”

Ansell was embarrassed when the nurse approached her to discuss the cleaning staff’s problem. She commented that if Katie’s mother was worried about her daughter not being able to be discreet, why had she made the story headline news? Ansell writes:

“It would seem I got off lightly compared to Katie Thorpe, whose menstrual cycle has become headline news. That such personal matters are being discussed on GMTV is ironic given that one of her mother’s reasons for requesting the procedure is that she will be unable to be “discreet” or “private” about it if she does menstruate.”

I agree with Ansell; there are many women who need assistance with such personal care. This does not mean that their dignity or privacy is automatically lost. I am a disabled woman. I have never been in the same position as either Katie or Ansell, but I can sympathise with them. Katie’s mother may think she is doing the best thing for her daughter, but she is not; she is taking part of her daughter’s identity away from her.

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Ansell understands why Katie’s mother may want her daughter to have a hysterectomy. She realises that some women with Cerebral Palsy may experience more pain and muscle spasms during menstruation. Ansell believes Katie’s mother could consider a hysterectomy once she has started menstruation. She writes in her article:

“So Alison Thorpe might be right. Periods could be a trial for her daughter. But it is possible that they won’t. I don’t believe she is wrong to suggest a hysterectomy, but I’m perplexed as to why it’s being considered before Katie’s periods have started, before anybody knows how they affect her.”

Here, Ansell makes a very important statement that was not made in the other newspaper articles. Since, like other people, Katie’s menstruation may not bother her, Ansell asks why Katie should be put through traumatic surgery.