In the news

I'm not really a strongly political person and this certainly isn't a political blog, but from time to time something hits the news which really makes me think hard. The story of Ashley X is such an item.

One of my first thoughts was that I could imagine this as the plot of a future Jodi Picoult novel. I don't have first hand experience of caring for a child as severely disabled as Ashley, who her parents call 'pillow angel', but I do know the psychological and physical strain of having to look after a child who needs constant attention and this will actually be one of the central themes of the novel I am writing. As parents we all have to take difficult decisions and I would not wish to criticize the choices of any other family, as only they know how they have to live. But I am very much on the fence about this one.

Ashley's parents are adamant that they have done this to improve her future quality of life, but in doing so they have almost certainly improved their own too. Sadly the best interests of child and parents do not always coincide and I wonder what representation Ashley had in the decision making process towards invasive surgery and hormone treatment, ie was there an advocate arguing the other side of the case? There is also a niggly fear that this case is giving out a strong message that disabled children are cuter and more socially acceptable than disabled adults, but when Ashley is grown up will she still be treated like a child because of her size, and how will that affect her dignity in the eyes of others? Is her cognitive ability actually as low as has been suggested and how can they be sure? Could treatments of this nature be misused by others in the future? So many questions, no real answers.

Ashley's parents have a blog here and there are links to responses by other parents on India Knight's blog.