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Thursday, October 18, 2007

Transhumanist Accusations

George Dvorsky has written extensively about science and technology. He is on the Board of Directors of the Institute for Ethics and Emerging Technologies and co-founder of the Toronto Transhumanist Association. Much of what he writes I disagree with--especially what he wrote about the Ashley Treatment earlier this year. Here I refer to his contention that Ashley X existence was grotesque because she had the mind of a baby inside the body of a full grown and fertile woman. Dvorsky's dehumanizing view of Ashley X led to the belief that mental age and body size were somehow connected.

Based on my previous posts and published articles about the Ashley Treatment, I obviously diagree with Dvorsky. Yet I was stunned by his most recent comments about the Ashley Treatment and the death of Daniel Gunther. On October 11 in Sentient Development, Dvorsky's blog, he noted that one person posted a comment on a MSNBC message board that maintained the Ashley Treatment was offensive and perverse. This view, Divorsky wrote, was seconded by disability rights groups, a fact that was "particularly upsetting for me, not just beause I supported Gunther during the controvery, but because of the possibility that his suicide was wrought by the undue pressure exacted on him by overzealous and vocal disability groups".

The above accusation is nothing short of gross. It has no basis in fact--Gunther's family maintans the Ashley X Case had nothing to do with his death (they point to a prolonged struggle with depression). To blame disability rights activists for Gunther's death is an exploitative smear tactic. Dvorsky's reasoning dimminshes Gunther's life to be about one case when I am sure it was far richer and diverse--a fact the family can affirm and to whom my heart goes out to.

Tuesday, October 16, 2007

Ashley X and Katie Thorpe and a Cultural Divide

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.