Of Pillow Angels, Ashley, and where do you draw the line

There was a story run in the LA Times recently, where a family out of Seattle whose 9-year-old daughter stopped developing cognitively at age 3 months. The family, worried she would grow too big for them to take care of her at home, and include her as much as they want to, decided to effectively stop her growth. She had a hysterectomy and high-dose estrogen treatments and is expected to get no bigger than about 4-and-a-half feet and 75 pounds. Here is a link to a story that ran in the LA Times: http://www.latimes.com/news/printedition/la-na-stunt3jan03,1,3070121.story?ctrack=1&cset=true

This has also been talked about on CBS news:

One of my friends on the listserver I belong to called our-kids was interviewed. Check it out, she makes some good points, and represents "us".

The parents made a website to explain their "side" of the story:

Lots of troubling stuff here, including the use of the term Pillow Angel. The whole treatment seems to be for the convenience of the parents, ignoring the risk to Ashley of inability to fight off infections, more rapid progression of weakness severe premenstrual SIB or seizure exacerbation, and many more things that were brought up by people I know who are ethical medical professionals who's opinions I trust.

Also, Lifting techniques and equipment exist, though not suitable for every situation, and it was not mentioned whether this was looked into AT ALL in this case. Medicaid Waivers may pay for modifications as well as lift equipment.

There are a few things that I have a lot of trouble with here:

They covered their own faces and other childrens faces, but not hers? Why do the others need privacy, but she doesn't?

There is a quote in there, "Furthermore, given Ashley's mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."

WTF?? Who besides Ashley can decide what is dignified for her? The parents who want her to be able to hang out on her "pillow"?

Also in the blog there is a reference describing someone with severe disabilities who has followed a normal course of growth and development as "grotesque".

Who gets to decide which person gets to wear the "grotesque" label?

They say that it's not about being able to care for her at home, it's only about her comfort and they would care for her at home regardless. But several of their justifications (removing her breasts so that she would be less likely to be sexualized by caregivers, having a hysterectomy to prevent pregnancy from abuse) are related to out-of-home care situations.

As parents of special needs kids, we all try to not judge each other or how we choose to raise our kids. Some people choose to withdraw, not to go out in public and stay alone. Others might fight like dogs to come up with the latest miracle "fix" for their kid. And then there are some who decide that they need to become politically involved and battle that way.

Generally, we help each other as much as we can, or stay out of the other persons way and let them go through their own processing of what they are dealt.

But when it involves such a high profile news story as this, and then you start having what people might term as "educated professionals" spouting off that this is a good idea and should become a normal course of action, well you have to fight back.

We fight battles every day in my sons school for him to be accepted and included into the general population, and usually are met with the same tired excuse; "That's not the way we do things around here". They always want to segregate him into the challenge room, to which we respond, "That's fine when you show me the segregated Safeway he will be grocery shopping at or the special needs gas station he will fill his car at".

Perhaps my friend Dan Wilkins over at http://www.thenthdegree.com/
can state it far better than me:

"If there is such a thing as Us and Them, it is not between black and white, old and young, disabled and non, male and female, gay and straight, catholic, protestant, buddhist, etc., etc., etc., blah, blah, blah.

It is between those who get it and those who do not."

Thanks for listening to me rant...


  1. Great post, Skyler's Dad. I have been reluctant to express an opinion about this issue since I have not come close to walking a mile in their shoes, but I think what you have to say about them is right on.

  2. Thanks Vikki, on rare occasions I come out of my "humor to survive" mode and take a stab at real issues.

  3. Bravo SD! I totally agree.


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