Thursday, August 22, 2013

Re-boot

So...I am back to posting here at the Ashley blog. I have not done so in a very long time for many reasons. But with the "treatment" back in the news and more and more people being sucked into it's "value", it was time to get back in the game.

I have tidied up a few things, mainly, updated some links on the side bar.  I will add here that, in my view, the most definitive, superbly written case against the so-called Ashley Treatment was penned a while back (2011) by the formidable Dr. Eva Kittay, herself a parent of an adult child with severe disabilities. It is titled "Forever Small: the Strange Case of Ashley X", downloadable from HERE. This is by no means light reading, but it's the best I have read to date.

I have received comments, some supportive of the treatment, most of which were thoughtful. I remain steadfastly opposed to it for all the reasons I and others have written about throughout this blog.  It will require reading it in its entirety to get all the points, but I find that the Maryland conference articles that Bill Peace and I wrote best sum up the material, as well as my "'final word" essay. Find these HERE, HERE and HERE

There are those criticisms that claim I or others are attacking the parents and their personal decision on how to "deal" with their daughter Ashley. The fact is that it is the parents themselves who have put growth attenuation and by extension themselves in the spotlight. They did not merely make a personal, private decision; they set up a blog and actively promote g.a. as a choice for parents who have children with severe disabilities. As a matter of fact, they imply that parents who do NOT choose g.a. are the ones failing their children. That being the case, then, they opened themselves up to criticism...and to analysis of their motivations. For the most part, their blog is convoluted, subject to frequent updates and changes, the information badly organized, therefore making a solid analysis of the material they present difficult to do at best. However, it must be done. Between the blog and interviews, there are inconsistencies. Their dear friends Drs. Diekema and Fost, say one thing and they claim another. Assumptions and speculation are presented as facts...and there is still no rigorous scientific scrutiny of the procedures and of their outcomes. Laws protecting children with disabilities from forced sterilization are being ignored. Ashley's parents themselves continue to deny the fact that Ashley's sterilization was deemed illegal.

Another argument is that since it is perceived that Ashley and "her kind" don't know the difference, what harm can come of attenuating their growth and removing whatever healthy but potentially troublesome body part their parents choose to do away with? Well, that argument is akin to saying it's okay to rape a woman while she is drugged unconscious because she wouldn't know the difference anyway.

What saddens me most is that g.a. is directing people away from advocating for services for those with severe disabilities and their parents with false promises of "solutions" to "problems". Counselling for g.a. is set to begin when the child is three years of age. How many new parents have wrapped their heads around their new lives at that point? And where is the balance of having these new parents talk with those of us with more experience, those with disabilities, those with a different perspective than a purely doomsday attitude toward disability?

In any case, I will once again post here from time to time, mostly addressing issues the parents brought up in their 2012 email exchange with the Guardian. There are some really questionable lines in there that I would like to work through.

Stay tuned if you are interested. I will reply respectfully to all points of view, if they, in turn, are presented in a respectful manner. 

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