Tuesday, May 8, 2007

The "Ashley Treatment" Was Illegal

Back in January I posted about a little girl named Ashley, who was severely disabled to the point of being an infant in the body of a 9-year-old. She can’t walk, talk, eat, or in any way interact with her environment or other people other than smiling. But she was still growing, and that would make life difficult. The larger she would grow, the harder she would be to move around.

So what did her family do about it? Most families would prepare for ‘round the clock caretakers and very regular medical checkups for the life of their child. But little Ashley’s parents didn’t stop there. They opted for something FAR more extreme. They convinced a hospital in Washington state to do something they called “growth attenuation therapy.” They gave high doses of estrogen hormones which would forever keep Ashley the size of a young child, so she would be easier to move around, include in family life, and “snuggle.” They had her breast buds surgically removed, just in case she should develop “uncomfortable” large breasts like other family members or the potential of contracting breast cancer. They removed her appendix, just in case it should go bad. And they removed Ashley’s uterus to keep her from “menstrual discomfort,” avoid the off chance of uterine cancer, and to keep her from getting pregnant in case she were raped.

Please note, for those of you who are already incensed by my post, all of the above claims and wording are from the parents’ blog, which you can read HERE. You can also find their email address there. Of course, the parents’ blog only includes statements and reactions of utmost praise for their actions.

Well, a recent finding by the Washington Protection and Advocacy System found that the Seattle Children’s Hospital had broken the law by performing the “Ashley Treatment”:

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html

It seems there’s this silly little law that “specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval” (quote: Mark Stroh, WPAS executive director), and the hospital did not get that court approval. In fact, as far as I can tell, the only oversight was from the hospital ethics board and a family lawyer who apparently gave them wrong advice.

The nerve of those imposing little lawmakers to step in and advocate for a child, when all her parents wanted to do was to sterilize their daughter, stunt her growth, and remove her womanhood! It’s for the child’s own good, right? Right??

I still say it’s nothing short of child abuse. Peter Pan syndrome run amok. Go ahead, disagree. I won’t delete your comments. How could I, a parent who doesn’t have a severely disabled child, possibly know what Ashley’s parents are going through? But since the operations were made public, advocacy groups for children, women, and the disabled, as well as parents of similarly-disabled children, have raised alarms at the extreme nature of the “Ashley Treatment” (ARTICLE), saying it sets a very dangerous precedent and oversteps the line of ethics. And there are plenty of examples of children with comparable severe disabilities who grew up and interacted with their families just fine, overcoming the issues as they came to them.

Too late to change Ashley back. She’ll be her parents’ “pillow angel” for life. As darling as their little girl is, and as easy as it is to care for her, I can only wonder how far the precedent could go. It makes me shiver.

Update (5/10/07): Today Ashley's father placed a video of her on YouTube.com, showing a happy Ashley on the deck of her house and in her room, and narrating it himself. Apparently I was the first one to view it, according to the hit counter. Here is the link: http://www.youtube.com/watch?v=Sd8snXy6Lg8. The only mention of the "Ashley Treatment" was a very brief note at the very end. Otherwise it was a simple video of Ashley smiling and babbling. Fairly pleasant. The only thing that freaked me out was the picture of Ashley sitting on the lap of "the Prince of Peace." You'll see what I mean…

Update (5/11/08): A statement was released by the Board of Directors for the American Association on Intellectual and Developmental Disabilities condemning the use of this growth attenuation “therapy”: http://www.aamr.org/Policies/board_positions/growth.shtml. Here is their concluding paragraph:

“It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood. While references to slippery slopes should be made with great care, we believe that this practice, if judged acceptable, will open a doorway leading to great tragedy. This door is better left closed.”

9 comments:

xUnknownxDepthx said...

I can't believe they could do that!!! That's scary shit! And I'm with you, it is child abuse...

Anonymous said...

Uh, how can you ever attain "womanhood" if you have the mind of an infant?

I'm sorry, but I think that what they did makes sense.

It would be more cruel to allow her to grow into a body which she would not be able to handle. I don't think she would have been happier as a woman, for exactly the same reasons as the family in question.

If her family is happy in looking after her, their care of her will be better and SHE will be happier. If she had been allowed to grow into an adult, not only would she not be able to enjoy any of the benefits of adulthood, but the quality of care provided to her by her family would decrease, whether they wanted it to or not.

To do this to a normal child would be horrible, but we should be reasonable and realize that there are exceptions to any rule.

In this case, allowing her to grow naturally would have been the crueller thing to do.

Anonymous said...

Not every slippery slope leads to, y'know, sliding all the way down. I think society is healthier with, for example, legal abortion, and with right-to-die laws (a couple'a slippery slopes if ever there were ones). And I think this treatment was absolutely a huge improvement in the child's life. Yes, it's a slope. But sometimes those slopes make real life for real people significantly better.

Angry Lab Rat said...

Well said (both of the above comments), and very valid comments. I have no argument that life for Ashley will likely be happier, at least for a while.

But when I ask myself the following questions, I start finding unpleasant answers:

1) If Ashley could have chosen for herself whether or not to grow up, what would her choice have been?

2) Doctors don't know what caused Ashley's encephalopathy. If you cannot determine the cause of a condition, how can you say for certain there is no treatment? Already early testing has shown promise regrowing brain cells with stem cell therapy. Who knows how much function she could one day regain with this and other emerging treatments. If she were to regain congnition, what would she think about her treatment then?

3) Would people be so supportive if Ashley had been a boy, or African American, or from a third world nation, or already grown up?

4)(and then the "kicker" question) How disabled do you have to be before these sorts of extreme measures become acceptable?

Judah said...

If you cannot determine the cause of a condition, how can you say for certain there is no treatment

So, just to point out one obvious flaw in this logic: I don’t have to know what killed someone to know I can’t raise them from the dead.

Much beyond that, I’ll just say that adults with severe mental disabilities are well beyond the abilities of many professional caregivers to treat—never mind a family that’s trying to take care of someone on their own. Human beings are big strong primates and when they don’t have cognitive restraints on their behavior they can fuck you up really badly without even meaning to. That is particularly true for boys, whose muscle density and size can make them really problematic.

That said, from the caregiver perspective, it seems likely that some of the stuff they did was just about their own emotional comfort. If you have to take care of all someone’s personal hygiene needs, I can understand wanting to spare yourself the stress of changing someone else’s pads or tampons, or washing under their breasts. That’s a fucked up reason to surgically alter someone, but caregivers have some right to protect their own quality of life and say, “Yes, I’ll do this. No, I won’t do that, and if it comes to a choice between that and signing my kid over to the state, I’ll sign the kid over.” Especially if their little pillow angel is at all likely to, say, outlive them.

Also, just as a PS, we've kind of been here before. There was an executive order in force from the '30s to the '70s that allowed for the forced sterilization of developmentally disabled people and people with certain disabilities (like deafness, believe it or not). That was eugenics, and I don't see us going back to it. Ashley is kind of another thing.

Zachariah said...

So you are arguing that her parents, the ones footing the bill and taking care of a complete vegetable, should not be allowed to take corrective measures to significantly increase the quality of both little Ashley's life and their own? The only description I can think of for your entire position is sick.

Ashley is not just "developmentally disabled." When you use that term we think of special ed kids who are a little slow in the head. This girl will never be able move, deal with her own bowels, or demonstrate meaningful cognative abilities. She is a vegetable, a broken organic machine. In terms of consent and decision making, she should be given the same rights as a pet. (Personally I would advocate giving her parents the option to euthanize her.)

The 'dignity' arguement is innaplicable to her because she is mentally a 3 month old. At her mental state she cannot have any concept of dignity, so her dignity cannot be offended.

Let's start with her size. She cannot move. You know what that means? That means she cannot exercise herself and she cannot shift the weight on her body. She is at extreme risk for obesity and bed sores (which can get infected and kill her, not to metion cause her extreme misery). Stunting her growth gives her parents the ability to move her easily without spending ridiculous quantities of money on caregivers and external devices. It gives her a body more directly in line with the limits of the cognitive abilities. Also, it will only INCREASE the quality of her life by at the very least decreasing her discomfort. So by a cost-benefit analysis stunting her growth is perfectly ethical.

Now what about her breasts? She has no use of them. Even if she was forced to bear a child (which would be rape and very illegal) she would not understand the need to feed the child. She probably wouldn't even know the child was hers, that's how much of vegetable she is. So keeping her breasts has no benefit. On the other hand removing them lowers her weight, removes their discomfort, and decreases her risk of bedsores. Again, by cost benefit analysis removing her breast buds is only a good thing.

Now what about her reproductive systems? She is incapable of giving consent, so she is incapable of ever having sex (it can only be rape). It would also probably be dangerous for her to even carry a child, not to mention the discomfort. If she did get pregnant, the baby would have to be aborted. So she has no possible use of her reproductive systems. On the other hand, her period would cause her incredible discomfort. That is not to mention the additional cleanup of the blood and chances of infection due to the presence of fleshy materials. So by cost-benefit analysis it is only good to remove her reproductive systems.

So where does that leave your arguement? You are stuck with only blind emotion, a gut reaction that is in fact baseless. No rights were violated because Ashley is incapable of exercising rights. Her discomfort was only minimized. If we wanted to do the truly human thing, we would give her caretakers the right to euthanize her and stop wasting so much time, energy and emotional investment in a vegetable (if they so chose). No harm was done here, only good.

Zachariah said...

Sorry, I just re-read some of your comments and I'm just stunned:

"If Ashley could have chosen for herself whether or not to grow up, what would her choice have been?"

I don't know how I can make this any more clear: she has less cognitive abilities than a dog. These decisions are all based on that one really simple reality. She cannot 'grow up' she can only 'get bigger'.

If Ashley could have made a choice, then this decision would not have had to be made.

Alan said...

Hi Lab Rat
Thanks for visiting my blog. I maintain that Ashley's folks did a wonderful thing for their child. By keeping her small, they have assured that her body weight will remain much lower as she grows older. Less weight equals less chance of bed sores and general discomfort.

By removing her breast buds and reproductive organs, they have made certain that she'll never suffer breast or uterine cancer or any of the myriad "female" problems.

Ashley will always have a body that matches her mind. How well would Ashley deal with the pain of menstrual cramps or the rampant hormonal overload of puberty?

Her parents have spared her much misery; misery that would have been caused by her inability to understand what was happening to her.

As her parents, it is THEIR right and obligation, not that of gov't, to speak and act for their child. Regardless of the legality of their actions, they have done the right thing for Ashley.

Best to you and yours -
Alan Burkhart
http://alanburkhart.blogspot.com/2007/01/ashley-treatment.html

Anonymous said...

My god, the ignorance. Every person with autism on the planet would be long dead if some of you nuts were making the decisions. Oh yeah, but now that we know people with autism have more than the "brains of a dog" as one of your freaks has stated, it's ok to value them as more than a vegetable.