Wednesday, February 3, 2010

Ashley X and Katie Thorpe and a Cultural Divide

William Peace

The debate surrounding the removal of Katie Thorpe' uterus has entered week two in the UK. Newspapers such as the Guardian, Independent, Daily Mail, and the BBC News have all published articles. Based on my reading about the case in a different country three thousand miles away I am struck by three things:


First, the mainstream British media, like their brethren in this country, do not understand disability rights. If they did, someone would have pointed out the obvious: it is not acceptable to modify and mutilate Katie's body. Katie has rights and her mother is requesting her daughter undergo a major surgical procedure that is not medically necessary. Like all people her age, Katie has the right to grow up with her body left intact. Alison Thorpe knows this as do the doctors willing to perform the surgery. Thus this case raises deeply troubling medical ethics foremost among them trying to use a surgical procedure to solve a problem that is social. As noted by Andy Rickell of Scope, an advocacy organization for people with cerebal palsy in the New Statesman on October 9 that "we do not believe that a child should be modified for society's convenience, but instead that society needs to adapt and become more inclusive of disabled people".

Second, Katie's mother has given a number of interviews and her choice of words leaves much to be desired. For example in the Daily Mail October 12 story "The humbling true story of why this mother wants her disabled daughter to have her womb removed" she commented that "there is no doubt it would have been better for Katie if she had died at birth". Alison also said she felt as though "looking after a disabled child is like serving a life sentence". Comments such as these are offensive and degrading to Katie Thorpe and show a stunning lack of awareness with regard to the rights of disabled people.

Third, articles about Katie Thorpe focus on her care and the degree to which her mother's life is not just compromised but consumed by endless drudgery. Katie's mother, Alison, and her partner, Peter, are Katie's primary care givers. Alison Thorpe has revealed intimate details about her daughter's life and exactly what is involved. The portrait painted is not pretty. There is no question Alison Thorpe is dedicated to her child and overwhelmed by her needs. However, I am struck by what I see as a major disconnect: the problems involved in Katie Thorpe's care are not medical. Surgery will prevent Katie from menstruating but I do not see how this will make caring for her any easier. Katie will continue to need care at all times and surgery will not change this fact. The problem Katie's mother has is a lack of support. Why has she not slept though the night for the last 15 years? Why has she been left alone to care for her daughte? What does this lack of support say about society and the degree to which the lives of disabled people are valued? No parent should speculate that it would have been better if their child died a birth--this is a social tragedy that need not occur and I wish the correct questions and issues were being discussed.

2 comments:

  1. I know this family and i can say with absolute certainty that they are not left alone. Katie has a lot of care, i myself have given homecare for Katie, along with many others. However Kate is severly disabled and often she doesnt sleep through the night so even with night carers this is very tiring for all involved.

    Alison is a loving and devoted mother who just wants the best for her daughter. Her comments may have sounded awful and hard to stomach but there have been times for Katie that she has been so ill and in so much pain that for a mother you wish she never had to go through that suffering in the first place. Katie really does have the intellect and emotional intelligence of a young child, can you imagine trying to explain to an 18 month old about periods and what was happening to their body.. Im not saying that im for Kate having this operation but I also do not think that this is the place of charities who do not know Katie or Alison to have the final say in what happens to her.

    The situation with Ashley X was also very different. From what I understand that was about their child fitting in with their family and not at all about what was right for Ashley.

    Katie can never have an adult relationship, get married or have a baby. There have been people who are physically disabled likening themselves to Katie and getting up in arms, they are NOT the same. Katie physically, mentally and intellectually is SEVERELY disabled and she does not understand what is happening.

    I hope that Katie never gets her periods.

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  2. Anonymous, thank you for your comment. It is clear...and Dr. Peace has pointed this out...that Katie's mother is a loving and devoted care giver. It is also true that she has said some very challenging things, things that, when published in a newspaper or repeated in a public forum, continue to paint a negative picture of disability. This sort of perspective affects ALL disabled people, regardless of their level of ability. I too have a child with severe disabilities...a girl...who will never have any children. She has started her periods, and they are very mild, though she is clearly affected by hormonal changes (just as a growing boy would be). These things cannot be predicted before hand. Secondly, my daughter has no clue she is menstruating...there is no need to explain it to her...it all goes in her diaper with everything else. What's to explain? I could paint a very terrible picture of my life with my severely disabled child...she is often up all night, seizes, shakes, is ill...but I also enjoy her company, her silly ways, and all the things (and people) that I have learned from caring for her. Ultimately, Dr.Peace's point is clearly laid out in his last sentence..."No parent should speculate that it would have been better if their child died a birth--this is a social tragedy that need not occur and I wish the correct questions and issues were being discussed."

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