Now I'm REALLY Getting Pissed Off!

It seems our blog is now being bombarded by the "disability rights" propagandistas. Evidently if you disagree with their stance in regards to The Ashley Treatment they want to reeducate you. Perhaps I should've said "disability rights" Nazis?

If you read through the comments you'll discover several bloggers make reference or at least point in the direction of David. I've been to his blog which is some supposed "gateway" to several disability rights blogs and websites. That's great. In fact it's terrific. I'm glad there are folks out there that advocate change in the system.

But I have a problem with David's philosophy and in particular he and his gang's continued characterization of Ashley's parents as barbarian. Here's some thoughts expressed there and my response:

"Benevolence" and "good intentions" have often had disastrous consequences for the disability community AND we deeply empathize with parents who face difficult issues raising children with significant physical 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. (David's emphasis) For decades, parents, families, and the disability 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 enactment of state and federal laws in the 1970s that establish 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.

And here is this little gem:

Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity (Bennie's emphasis). But the truth is, they have lost their dignity.

This was my initial comment before I really began to really see what David's blog is about:

I have been brought here by a lady named Connie. I have an entirely different perspective and opinion than yours. First off, I hope and pray my son will have the cognitive abilities and skills you obviously have. I do know of stories that give us parents of EXCEPTIONAL children hope just like yours. They are unfortunately very uncommon.

I am not advocating the treatment Ashley's parents chose as an across-the-board measure to be taken by every child who exhibits the symptoms of Ashley. Those parents made a decision when she was six years old. I will also say that I have not read enough of your blog to know when and if you showed signs of intelligence at such an early age to determine how to treat your CP. I will guess that you showed an incredible determination and will at a young age to give your parents and caretakers hope in regards to your future. I will make a guestimation and say that my son fits somewhere in between. I have been his cheerleader and "pusher" (for lack of a better word) since he was born. I could sense his determination and effort long before many others (including his Mom). Early on we were told "there is nothing" to work with.

With that said I cannot agree with your assumption about Ashley's parents. How have they failed? How have they not been great care-givers of a beautiful child? By what they have done with a collective of ethical people who made an oath of doing what is best for the advancement of medicine be so wrong that they now are no longer deserving of being parents? I'm going to type this the best I can but those parents have made the best choice that they can given the knowledge they know.

You are a male so you have no idea what menstrual periods do to a young woman. You also failed to mention that puberty begins for girls with seizure activity and known (or unknown) genetic disorders. Ashley was already showing signs of puberty at the age of six. That situation is much different than yours or my son. My son has just gotten his first real wheelchair and there are chest constraints that could make him uncomfortable without breasts.

Everyone wants to paint this situation as a matter of convenience. Folks have said, including you, that Ashley's rights have been violated? How? We parents do the best we can in situations like your own. Well I'm willing to bet you were much different from the children you were initially placed with. I don't know your parents. I'd surely like to meet them one day. But you are crucifying two loving people who are doing the best they possibly can for their child.

Oh by the way, she does not have CP. (It is) static encephalopathy (a condition) much worse. You can look it up for yourselves.

Later I added (and I was correct):

I'm guessing this is an ambush. I did think more of Dream Mom's opinion (which is) if you don't agree (with us) then you're wrong.

And then after reading David's "sacrosanct" dissertation I left these two comments:

So by sacrosanct you mean me and my wife desecrated my son's body by removing 2 of his 12 finger digits, repairing his cleft palette, and inserting a trache into his neck?

It is quite evident that many of you have visited my blog to sway my opinion toward that of your writers here. Fine. I appreciate what you site is about and the efforts that you make toward disability rights. HOWEVER, I STRONGLY DISAGREE WITH YOUR CHARACTERIZATION IN THIS REGARD: "Ashley’s parents have committed the ultimate betrayal. They have treated their daughter as less than human, not worthy of dignity. But the truth is, they have lost their dignity." Anyone of you who thinks this is true is not worthy of the defense of my son's rights. It is sanctimonious bullshit.

Basically I'm through dealing with these jerks. These people see themselves as the final ethical word about choices exceptional parents have. They operate just like government lobbyists some of whom I'm positive link to David's site. I feel about them lobbying on behalf of my son the same way I know some African Americans feel about Jessie Jackson lobbying on behalf of their equal rights.

I've said enough already on the subject. In regards to making the public aware of disability issues it is unfortunate that this issue has not united us but divided us. That is the worst part of this.