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Saturday, January 13, 2007

Ashley from Stepford- Reposted

I have taken this post down and put it back up again because that is the only way I could get rid of an inappropriate clotheid commenter who thinks that profanities are a meaningful way to communicate. I have also turned on the comment moderation to ensure that this psycho will not be able to mar my blog any longer. If he posts without profanity, personal threats to me, and has something intelligent to add to the conversation I will let his comments go through. It's the first time I have actually been threatened via my blog and probably not the last. Sigh.

Apologies to Maureen, Emma, and Janet who left meaningful comments that got wiped out with the rest. I have also take the opportunity to update this post after thinking about it more.

First off, let me be really clear. I think the "Ashley Treatment" is wrong. Wrong now and wrong forever. There are so many reasons why it is wrong but the main one being that it is a violation of Ashley's human rights. How horrifying that there are now proposed studies to try this on other disabled people. Disabled people who are helpless to protest or disagree.

Ugh. I am just so disgusted and upset at the whole thing. I have so many questions. There are so many "nevers" on their blog. She will never do this or that. All their "could happens" are negative things like cancer and sexual abuse. My biggest question is have they ever tried any alternative therapies to helpher brain heal or grow? Is she not an excellent *future (if it is safe one day - which is might be if the government stops blocking the research into it) case regenerative stem cell therapy? What if that becomes a reality in the future and she could have a chance at a better life - but oopps you are 9 forever????

Even if her condition is truly one that will persist and never change, is it right to alter her body in these ways? It is the system that needs to be changed to include support for these parents. Technical support like a lift and emotional support to deal with the situation. The medical support they are receiving seems quite a slippery slope toward massively infringing upon the civil rights of all disabled people.

This quote below is from the Disability Rights Education & Defense Fund and captures how I feel about this exactly(see link below):

We deeply empathsize with parents who face difficult issues raising children with significant phsycial and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. For decades, parents, families, and the disabled community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to the enactment of state and federal laws in the 1970s that established extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

The medical profession believes there is no recovery from many neurological conditions and some of these conclusions are based on very, very limited population sizes statistically. When something is not clear, making a decision about what to do about it becomes more difficult. Whether Ashley's parents deny it or not, their situation and decision IS all about ease of management. They sound like loving parents - kind of. But the fact that they keep denying this is about managing Ashley physically really irks me. Why not just admit it?

I can personally relate to the fear of a child who is not mobile getting bigger - god my back is in pain every singleday. But my goodness I am creeped out and even if Ellie did not show as much promise as she does or any promise, I would not alter her body unless it was medically necessary for her survival. I think these parents are not being totally honest about their motives and therefore the whole discussion is twisted to begin with. It is such a slippery slope regarding it's impact on the rights of disabled people.

So not trying to be quick to judge but I can't jump on the middle of the road live and let live band wagon either. I am just too creeped out. Gimp Parade, as usual, offers a great perspective and some important points on this whole thing that you can read here.

David has also posted on this here and it is definitely worth the read from the Disability Rights Education & Defense Fund here. It seems that my abusive commenter is all over David's site and Gimp Parade has been lucky enough to have an encounter with him as well. Sad that some people can't discuss things in a civilized manner. Diversity of thought through civilized discussion is what brings enlightenment. Anger only generates fear and ensures ignorance.