BlogHer - The Ashley Treatment -- another Terri Schiavo case about to explode? - Comments

Thanks for your comment Agnostic Mom

Melinda Casino — Mon, 05 Feb 2007 14:49:14 -0600

Your point of view helps expand the discussion.

Melinda Casino, Contributing Editor, Feminism & Gender
Personal Blog: Sour Duck

I disagree with the red flags.

Noell — Thu, 18 Jan 2007 07:48:10 -0600

What you consider red flags I consider human nature. The parents' "over the top" expression of joy is what you must expect from people who are in the midst of a potentially world-changing controversy. They are protecting themselves against the many people are going to react with extreme anger and accusations of child abuse.

The raw and honest expressions of despair and difficulty that you were looking for is a newer trend in American culture, a trend that many people are uncomfortable with. You cannot expect everyone to be able to jump on that bandwagon. The fact that they expressed their fears of future difficulties tells an adequate story.

When it comes to the "pillow angel" nickname, have you not seen other parents of disabled children do this? Every parent and close friend that I know of disabled children has these types of nicknames or myths they tell themselves about how their child is special, an angel who god protected from the cares of the world, etc. This is so much about human nature. It is what most parents of disabled children do.

As for comparing this to keeping girls from growing too tall: I agree with everyone else that that is a disgusting practice. I do not think we can compare it to Ashley's situation (in which case, for the ethics of it, maybe we need to personalize it with her name, since it is a rare case that would qualify ethically). Ashley's case was not about vanity. It was about compassion. It was about preventing diseases and a lot of pain.

Listening

mcmilker — Wed, 10 Jan 2007 02:08:18 -0600

Nice comment Melinda. When I first read about this case, I wasn't sure what my position was. I'm still not sure. I feel qualified to have an opinion...but not an informed one!I've been lurking on blogs and reading comments from those who are in a better position to give an opinion. I look forward to reading your follow-up post.

MC Milker

Rebranding

Koan — Tue, 09 Jan 2007 00:36:09 -0600

The new picture is the pictogram / characters for koan - since I decided to remove my image from my online presence (because the old one wasn't particularly representative any more, and self-preservation issues prompted me not to replace it with a more up-to-date version) it seemed like a suitable alternative. :)

Not that my "online presence" amounts to much, these days. Anyway, this was an instance where the "dead tree media" version of the story had a little extra food for thought, so I thought I'd share.

I was facing a steep

Melinda Casino — Sat, 06 Jan 2007 12:40:35 -0600

I was facing a steep learning curve here as I didn't have experience or knowledge of the disabled community blogs nor disability rights. So I focused on the parent's statement instead, and the rhetoric used in it. There were alarm bells going off all over for me.

I've since written a follow-up post for BlogHer that links to disabled/feminist bloggers and what they think about The Ashley Treatment.

Thanks for your comment, your views are always welcome here. And anyone who wishes to disagree with me, they're more than welcome!

Melinda Casino, Contributing Editor, Feminism & Gender
Personal Blog: Sour Duck

Koan you've changed your

Melinda Casino — Sat, 06 Jan 2007 12:34:58 -0600

Koan you've changed your picture, I didn't "recognize" you at first. Nice one...

I appreciate your comment and research -- your comment could be a post in itself.

Melinda Casino, Contributing Editor, Feminism & Gender
Personal Blog: Sour Duck

Body Acceptance

shelleyp — Fri, 05 Jan 2007 19:18:56 -0600

I have a difficult time believing that the medical community would condone this. At the same time, I'm not them. It does seem to me, though, that they are trying to strip this child's female identity. Are they fixating too much on this?

As for height, I grew up in the 60's. When the doctors told my parents I'd most likely grow taller than both of them (my Dad was 6'1"), all my Dad would do was tell me to stand up straighter.

I didn't quite make 6'1". Stopped just shy of 6 feet. So much for being 'desirable'--the medical professionals that gave out this treatment should have been kicked out. I must admit, that's my opinion of the doctors involved in the "Ashley treatment".

In today's Guardian...

Koan — Fri, 05 Jan 2007 05:45:42 -0600

I caught the back end of a piece about this story on the lunchtime news on BBC TV, yesterday - and there's an article in the G2 section of today's Guardian, which is basically an edited version of a post on the parents' blog, which you've linked to. Sadly, the online version of the Guardian article doesn't include a counter-position, written by the mother of a 17 year old girl. In that counter-position, the mother says:

It's tricky to assign developmental ages, but mentally Eleanor's about a year old, and we don't expect her skills to develop any further. A question I would ask Ashley's family is: "Have you considered whether how she is at nine will really be how she will be at, say, 17?" Nobody would say my daughter is the same person now that she was at nine. She's more assertive, she's got a bit of a sense of humour - there are all kinds of things like that, which make you wonder about artificially interfering with development: the assumption seems to be that because she has never changed, she won't change, and I wouldn't rely 100% on that. Who knows how somebody lives in their own body?

Who, indeed?

But, I'll confess that the thing that shocked me the most about reading the Guardian article (and included in the blog post you linked to) was this:

"We learned that attenuating growth is feasible through high-dose oestrogen therapy. This treatment was performed on teenage girls in the 60s and 70s, when it wasn't desirable for girls to be tall, with no negative or long-term side effects."

I'm ashamed to admit that I didn't know that such therapy had been used for such purposes - and I was absolutely repulsed to read it. I've no basis to approve or disapprove of Ashley's parents' actions, but I *do* know hormones are *not* to be played with lightly. That they were ever used in pursuit of such aims leaves my jaw on the floor.

The Ashley Treatment -- another Terri Schiavo case about to explode?

Melinda Casino — Thu, 04 Jan 2007 22:37:38 -0600

"Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life." - BBC News

The Ashley case immediately reminds me of the Terri Schiavo case. When disability and gender intersect, it acts as a lightning rod for society's anxieties about women's, and girls', autonomy and roles.

In some ways, in fact, gender is at the forefront of these cases.

I've read a statement

made by the parents at their blog. Here are my initial thoughts.

The first red flag, for me, is the repeated insistence that their child brings unlimited joy and is nothing less than a blessing. This seems over-the-top to me, given that she requires life-long care and attention. It seems much more human to say, "Yes, we love her, but no way did we anticipate having a disabled child, and at times we resent the care she needs."

Acknowledging that caring for the disabled is an extremely taxing job that isn't all joy and rainbows wouldn't mean they didn't love their child; if anything it would remove the taboo for carers to discuss the feelings that aren't publicly admitted. And this would help those who are in similar situations but feel isolated because their feelings carry stigma.

Another red flag is this business about calling her a "pillow angel", which, again, strikes me as making the child overly-sacred, pure, and innocent. Why is this so bad? Because it makes the girl less human and complex, and more of a cutout cartoon figure. This removes her human-ness.

Finally, the name. Naming the series of procedures "The Ashley Treatment" accomplishes several things:

it makes it extremely personal
it ennobles both Ashley and her parents
it normalizes and disguises the nature of the operations

All of the above makes it more difficult to examine the reality of the proecedures and discuss its ethics.

More will be discussed at The Gimp Parade, so keep an eye on it, and if you're interested in this issue you should also visit Women of Color Blog, who has written an excellent lengthy post on this.

Keep reading the blogs.

Link: The "Ashley Treatment", Towards a Better Quality of Life for "Pillow Angels"

Melinda Casino's personal blog is Sour Duck.

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