enSue

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I understand the parent's reasons for doing this, but I wholeheartedly disagree with their actions.

Even though the 10 year old girl is still young and severely disabled, it doesn't mean that the parents should make such a decision for their daughter for numerous reasons that I believe far outweigh the benefits of going to such extremes. Firstly, technology, especially medical technology, advances at an alarming rate. There are currently ways to appease the "inconveniences" she might experience through puberty and adulthood (i.e. "cramps and pain from menstruation", bodily changes, breast growth, etc). Physical therapy can keep her muscles from the effects of atrophy, and pain medication can handle menstrual cramps. And who knows what the future will bring in regards to available and innovative medical treatment. We may have drugs available that can improve her mental state, if not her physical mobility as well. She may very well be able to function on a level closer to that of a teenager or young adult with the proper treatment (depending on the available medicines and therapies, that is). I think the parent's actions are premature and selfish. Even in the remotest case that the child may one day be able to make some decisions on her own as a result of proper treatment, she should be the one to make this important decision about her own body; not her parents.

And even if the child's developmental state was at its peak (at 6 months of mental maturity) that doesn't mean her parents have the moral right to do this to her body. The idea of keeping her body smaller to match her mental age is impractical. How do they not now that stunting and hindering hormones to promote her physical growth may not have been in the best interests of fighting against her disease/disorder? What if the extreme and varied changes the body goes through during puberty may actually help her condition improve? I don't claim to be a medical expert; I know that not many diseases/disorders are like this and that some degenerate as a person ages, but there are some diseases/disorders that actually lessen, if not disappear, with age due to hormonal balances and changes, and the neural networking transformation seen in the body at different stages of life. Besides, why would the parents want to deprive themselves and their daughter of learning what she will look like as she becomes a woman? Regardless of the physical and mental state of a child, don't most parents desire seeing their children grow up, not just mentally but physically as well?

The parents claim this was done to provide the best care for their daughter -- that it would be easier to care for her if she stayed small. Her larger adult size won't hamper her comfort, even if she is bedridden, if cared for properly. Her size isn't so much a problem for her as it is for those who care for her. It may be easier for physical therapists, nurses and caregivers/parents to care for a smaller person, but only where lifting or repositioning is concerned, which I believe is a minor issue. I agree that it is easier to cuddle (as a means of comfort) and bathe and clothe a smaller person that it is to do so for a large adult, but we're not talking about someone who has the definite potential to become a 300+ pound, 6-foot tall adult here! It is perfectly common for adults to be cared for without difficulty. There is equipment designed specifically to aid people in the care of the adult disabled -- going so far as specific devices for specific tasks and disabilities, even for extreme cases of catatonic individuals. I feel the girl's parents decision might be more influenced by their personal and emotional needs than their child's. Maybe they fear they won't feel as attached and empathic to an adult child with a baby's mind. Maybe keeping the girl small and forever child-like will help maintain the bond the parents feel with their daughter. Regardless, I don't think this is reason enough for such an extreme act. If this were their mentality, then they should see a therapist to accept what will come in the future.

Even if their concern is potential rape and impregnation by a potential nurse/caregiver late in the child's life (say when the parents are no longer around) -- which wasn't mentioned in the article but addressed in the Wikipedia article -- I would still think this surgery is too radical as a preventative measure. If others followed such a mentality in other aspects of life, the world would be more governed by fear and prejudice and racism to a level greater than it already is. Even if people have the right to go to such extremes (i.e. surgery to remove or stunt the growth or function natural and healthy physical functions of the body, or even body parts), such an act should only be done with the patient's consent, or, in the case when the patient can not make such a decision, only when the medical procedure would help save the patient's life or prevent a more debilitating disease or impending medical complication. I see neither a debilitating disease or impending medical complication for this 10 year old girl.

I hope the medical community challenges and disagrees with this proposal. There are more practical alternative methods of treatment to care for extremely disabled (and catatonic) individuals that won't put the patients' rights into question.

P.S. And don't get me started on the term "pillow angels." I think it is a disrespectful, generalized name that carries too many stereotype-like characteristics. It is also too similar to the term "little angels" -- which I find to be a very alarming method of coping and rationalizing a unborn baby's death -- in which the deceased fetus is dressed up and photographed as momentos.

P.S.S. My apologies for the delay in writing about this "old" news. I had actually written it in an email to my husband on March 13th, but didn't get around to posting it until now.

Vox blogs may see a great social networking feature sometime within the indefinite future. Six Apart, the parent company of Vox, announced several days ago on their corporate blog that the Action Streams Plugin was introduced for MovableType. Action Streams is an aggregator that publishes your activity elsewhere on the internet to your blog. Thus, your Twitter status updates, Flickr uploads and favorites activity, and so on are included (based on your choosing) on your MovableType blog. (Visual examples can be accessed via my Link, MovableType's blog, or the staff's working demo.) This is similar to, albeit much more robust than, the LoudTwitter application that I and many other bloggers have been using to post their daily Tweets to their blogs. Obviously, this is an exciting, very innovative, and desirable feature for blogs.

Upon being asked if this will eventually be added to TypePad and Vox, Six Apart's David Recordon replied by expressing the company's interest in eventually shipping this feature to both platforms. I really look forward to seeing this come to fruition on Vox. I can't wait!