>In case you haven’t heard about it this is a link to Ashley’s parents website which explains what they had done to her and their reasoning behind it. It makes some very interesting reading.
The short version is that Ashley X is 9 years old and has profound physical and learning disabilities. Her parents love her dearly (that much is clear from their writing) and call her their “Pillow Angel”. They have taken steps medically to ensure that she remains in a prepubescent state forever.
It’s not something I agree with and it is something I am glad wasn’t done to me. However they did do what they think is best for their child and really that isn’t something we can condemn. Realistically I think this probably wasn’t the best choice for Ashley and that they haven’t considered several issues. It really is, as Jacqui said, a case of damned if you do and damned if you don’t.
I do worry about the fact that it was passed as a suitable treatment by an ethics board and also by reports that Ashley’s doctors have had requests from other parents for their children because at the end of the day this is not something that should be being done to children. Especially as doctors frequently give incorrect prognosis. What would happen if that was done to say, a two year old and then it turned out the situation wasn’t as bad as anticipated. It’s a bit of a slippery slope.
I am physically disabled and I know a lot of other people with physical disabilities. Once or twice I have been faced with people who assumed I also have cognitive difficulties but I also know a few people who have CP (and other disabilities) to such an extent that this is a regular occurance for them. I also know several people with learning disabilities (less severe than Ashley’s appear to be) and I would hate to think that they would be subjected to part of the Ashley Treatment. They are all valid members of society and so is Ashley. They and Ashley deserve to be treated as such and not reduced to permanent childhood.
Also, Pillow Angel is a horrible term but as Jacqui said in her reply to my comment on her blog (talk about a run on sentence!) some people think the fact that she calls her blog Terrible Palsy is out of line but she finds it funny and so do I and may that is the case here. It (pillow angel) works for them and whilst we may not like it not all of us can be as militant about people first language etc as I and others are. A lot of the language is offensive if you believe in people first language and some of the sentiments or facts presented are confusing or incorrect. But, you know what? Live and let live. Sometimes it’s all people can do to survive and I wonder if that is the case here.
Ashley was treated as she was treated, that cannot be undone. And whilst I do have many many issues with this I think we cannot truly condone the parents. I blame the doctors and other support agencies who allowed it to get to a stage where her parents felt they had to do this and then carried it off.
Don’t blame the parents. Yes, a lot of parents would not do what Ashley’s have done but at the end of the day sending them hate e-mail or whatever isn’t going to change anything. What we need to do is make sure this never happens to any other child.