December 15, 2010

The Ashley Treatment- Four Years Later


Four years ago, the story broke about a nine year old girl who, three years earlier, had undergone growth attenuation surgery and had had her uterus removed. This was not done for any medical purpose, but rather it was done to intentionally keep the girl from reaching puberty and to keep her from growing to be more than 75 pounds. Ashley has a profound developmental and cognitive disability. Deemed the "Ashley Treatment", this surgery was performed so that her parents could care for her easier. It was later found that Ashely's rights were violated by sterilizing her without a court order.

So, Ashley, you're what, about 13 years old now? And you've been denied puberty. I know it's not this surgery that has denied you the social aspects of adolesence. I know it's your disability that keeps you fom school dances and middle-school-hallway-"who's that cute boy?"-gossip. And I know it's your parents and others referring to you as 'pillow angel' and seeing you as some sort of mental infant that keeps people from understanding that, chronologically, you are not an infant and, theologically, you are not an 'angel'. And I know that because 'ethically confused', to put it politely, doctors decided to remove your uterus, your body will never mature, a deception in that you ARE 13 years old.

I know how difficult it is to provide physical care to a fully grown adult who has no ability to assist in any part in his own care. However caring for such individuals can be and is done all the time. And, with technology progressing, it's getting easier. I fear this surgery was performed on you, not because it makes caring for you easier, though, that was probably your parents sincere intention. Rather, I fear society allowed this surgery because of our ignorance about and prejudice towards people with disabililities as profound as yours.

You are not an infant, you are not any kind of angel (nor demon), and your needs are not any more 'special' than anyone else's. You are not a 13-year-old with the mind of a baby- you are a 13-year-old with a profound disability. You are not to be laid on a pillow to be cooed at or gazed at like we do with a newborn. You have the life experience of a 13-year-old girl, which should be respected, with a wisdom about life that is uniquely yours, whether you can ever express that wisdom or not.

You're called a 'pillow angel', but you are neither an angel nor a demon; you are a human being. You have been created in God's image just like every other human. You are no more of a sinner nor any less of one, no more nor any less in need of a Savior.

Your needs- to eat, to breathe, to love and to be loved- your need for Jesus for the forgiveness of your sins and for hope- are just like anyone else's. You may need more assistance than others in having those needs met, but your needs are the same as my needs. They're just not that special- and we don't have to keep you small and attempt to deny your sexuaility to better meet your needs any more than we do mine.

Ashley, because of your disability I know that you may never understand the indignity that was done to you. But, I know- and it really hurts my heart. I just wanted you to know that I see you- you- as a young woman. You are female. You are one of us, one of the gang. Women with profound cognitive disabilities are created to reflect God's image in their femininity as much as women without them.

And femininity is not all in the body- it's in the soul, in the spirit God gave you. You can still reflect beauty, mercy, and grace. THAT no doctor or hospital ethics committee can take away from you.

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