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Sunday, Nov 8, 2009
you can make this happen, but you have to ask. write to the "Chief" or a teacher's magazine. and when you get volunteers, *lead* them yourself to the specific child.
I have given this a lot of thought, and I must say I think dangerous logic has been used to justify something that is a violation of a human's right to a full potential. These types of medical procedures are akin to that which was done in the 50's and 60's, and have since been universally understood to be wrong.
Further, the term "pillow angel" indicates her parents mentality toward her. The word "angel" gives a distinctive and seemingly intentional positive tone to Ashley's state. As in "if she is going to be disabled, we like that fact that she simply lay in one spot like an angel...it would be SO hard if she were active and disabled". The attempt to lessen the negative aspects of this in this blog in what seems like an effort to garner supportive feedback would lead one to believe Ashley's parents need to continually justify their actions.
The fact that an analogy is made between removing breast buds and removing a birthmark speaks volumes about how detached from reality Ashley's parents are. Let's make another analogy. Say Ashley's mother was in a car accident and suffered a closed head injury that rendered her unable to care for herself in any way, walk, talk, eat, or otherwise have what most of us would consider a "fulfilling" life. Let's further say that because of her size, caring for her at home becomes unreasonable, and that placement in some kind of long term care facility is necessary. Should a full mastectomy and hysterectomy be performed on her? After all, she won't need her uterus, menstruation would be nothing more than an inconvenient monthly occurence to her caregivers, and breasts, especially the large variety she seems to indicate she has, would only serve to "sexualize" her and render her more prone to abuse and rape. What's the difference between this scenario and Ashley's? One thing - age, and age only. Most reasonable people would agree that performing the aforementioned procedures on Ashley's mother would be a gross violation of her human rights, and somehow a leap in logic has been made that because Ashley's is 20-40 years younger, it's perfectly OK. Why?
This analogy might seem a bit tongue in cheek, but the intent is not that at all. Really...think about the comparisons here. You can justify anything at all if you ignore the basic human right to live as a whole person with as much functionality as given you. In addition to this, nobody knows what will happen in the future. Sure, doctors have told Ashley's parents that her brain will never develop beyond the age of three months. More than likely that will probably be the case. However, occasionally we hear of comatose patients regaining consciousness after being pronounced brain dead or spinal cord damaged patients gaining more movement and mobility that any doctor thought. Who knows what 20 years could do for Ashley's development. What if she gaines more awareness some day and has enough cognitive ability to wonder why she's so short and why she has no breasts? Again, PROBABLY won't happen, but the reality is that none of us can predict the future, and stranger things have happened.
Lastly, much of the the impetus for these procedures seems to lie around the desire to continue in-home caregiving to Ashley rather than placement in a long term care facility. It's interesting to me that the two extremes are used as a justification. Why would 6-12 inches of additional height dictate placement outside of the home versus in-home assistance? Undoubtedly Ashley receives financial assistance of a greater or lesser degree based on her disability. It would seem that in-home care would certainly be achievable, especially given Ashley's parents seeming ability to persevere toward a goal. Certainly if you can present a situation like this to a group of doctors and bioethicists and gain approval, you should be able to make a goal like in-home care happen, and happen in a way that reduces the inconvenience of having a disabled child.
If the goal is in fact in-home care, and apparently limiting her growth is the largest factor in that (and saying theoretically you agree with limiting her growth in the first place, which is not possible for this writer), why would the additional precedures such as a hysterectomy and breast bud removal be necessary? If limiting her growth enables in-home care, the "sexualize" agrument flies out the door. Her reduced size would enable in-home care, thus she won't be prone to sexual abuse or rape. Yes, I understand she could have large breasts and periods, and how inconvenient that would be to her caregiver and the impact on the supportive devices that attach across her chest, but inconvenience should NEVER justify anything like this. It's not like these types of issues aren't common and aren't dealth with on a daily basis (ie supportive devices take into account the fact that women have breasts).
This case has taken a large leap back 50 years in medical eithics...we can only hope it stops here and we all take some kind of lessen from this, especially the doctors that are faced with similar decisions in the future. While this wouldn't justify the treatment toward Ashley, at least it might restore some dignity in a situation that seems to be lacking in the same.
...ANY of the supposedly "ethical" arguments against this procedure.
I was born with a disease for which I take daily medication so as to ensure I don't suffer. Had I also been born developmentally disabled would it have been unethical of my parents to make the decision for me to take this medication? Or would all of you have argued that morally and ethically I should've continued to live without my meds to experience a "normal" life?
If normal is your argument, then argue that she be turned into a fully functioning human.
Absent the ability to do that you can all shut your mouths until you live in her parents shoes.
And yes, "Pillow Angel" is an unfortunate turn of phrase, but, frankly, let the parents call her whatever they want, so long as it's not abusive, or burdensome, they're doing her all the favors they can.
And good for them.
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