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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.


Mete said...

I've been lurking for a while, and just wanted to comment. You made a statement that makes me think:

...[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.

The question is, what do you mean by survival? To me, "survival" is the difference between life and death, nothing more. But sometimes one can survive without thriving.

There has been talk of implanting a vagas nerve stimulator, something similar to a pacemaker, to (possibly) reduce my son's seizures in the future. There is also another surgery that has been briefly discussed to separate the halves of the brain, also for (possible) better seizure control.

There is no guarantee that either of these procedures will work to reduce his seizures. They have varied success rates. And he can absolutely survive without them. However, what about his quality of life with 80+ seizures a day? Is it not worth a chance at giving him a better life?

We often have a possibility to make life better, even if survival is not at stake. This is just one example that I am facing, but other parents face similar dilemnas every day. Personally, I would think twice before making a "never" statement with something as complex as parenting.

I think it's unfair for you to call Ashley's parents dishonest and say that their true motivation is their own needs (ease of management). You may disagree with them, but is it that difficult to give them the benefit of the doubt? To accept that they might actually be looking at what's best for their daughter?

Yes, there is a side benefit that it is somewhat easier to lift Ashley at this size than it would have been if she got larger. I have never seen them deny that. However, she is still over four feet tall, 75 pounds, and severely physically and mentally handicapped. I think it's safe to say that caring for Ashley will never be "easy", no matter what her size.

Ryn Tales said...

Mete, Thanks for your thoughtful comment. I think that having 80 seizures per day is life threatening to your son in that it is damaging his brain. The differences between your son and Ashley are great in that she is not having seizures. In fact her parents report that she is generally pretty placid. They did the things they did out of fear for the quality of her life in the future - not at present where they report she is well cared for.

There is no medical urgency there. Your son having so many seizures has medically urgent needs. Seizures are horrible things to live through. I have seen my daughter have them and they clearly are awful. I think you have to do whatever you can to help your son have a better quality of life. I agree with you about not making never statements. You're right there.

We have had to alter Ellie's body and it really bothers me that we did. She has a g-tube and shunts. Both were medically necessary. She also has AFOs so that her feet don't twist permanently. The Rudolf Steiner folks would say that that is over board.

The problem I have with Ashley's parents is that they are recommending this for other children. I would hate it to become one of the things the doctors offer up in the NICU for example when outcomes at that point are not clear.

I am sure Ashley's parents are doing the best they can with what they have got. I do empathsize with their issues as I am a parent who is facing lifting a non walking, crawling or sitting on her own child. Just the same, I think what they did is wrong. I think on the benefit of the doubt side for them that the system has failed them. The fact that they can't find carers for her that are competent and don't have a lift is just plain wrong too. I know that in Massachusettes these benefits can be had if you fight hard enough. In other states it might not be so. Either way it's an incredibly difficult situation. Just the same, holding out that the Ashley Treatment is a plausible way to proceed for the general disabled population is truly not the way to go.