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.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Tuesday, October 16, 2007
Ashley X and Katie Thorpe and a Cultural Divide
Posted by william Peace at 12:40 PM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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