I've been thinking a lot about Ashley X this week. You know, the little profoundly disabled girl whose parents and physicians have medically stunted her growth so that
she's easier to manage at home
she'll be more comfortable?
The best editorial I've read so far is from The Scotsman
The story of Ashley, who was born with a rare brain condition that means she has the mental and physical capacity of a three-month-old baby, is, in fact, so multi-layered it has already engaged the brains of medical ethicists in the USA for more than a year. Caring for Ashley has always been unimaginably demanding: she cannot walk, talk, swallow food, hold her head up or roll over, and is reliant on her parents 24 hours a day. On the other hand, unlike many severely disabled children, she is not in any way aggressive. Her family call her their "pillow angel" because when she isn't moving to music, she lies so peacefully on pillows or cushions.
Her parents are clearly devoted to her, filling her room with stimuli and moving her from room to room as you would a baby so she can benefit from a degree of social interaction. Yet faced with the prospect of the early onset of puberty at the age of seven, they set out on a course of action which was to lead them to be vilified. They successfully lobbied doctors to undertake a package of procedures to ensure Ashley would never grow up: they removed her womb and her immature breasts, and fed her oestrogen to stunt her growth. --snip--
Given the daily pressure they are under, Ashley's parents' decision is entirely understandable. Less so is the attitude of the doctors who seem to have acceded so readily to their request. In the UK, any decision of this significance would have been made by a court, with a lawyer appointed to fight Ashley's corner, and ensure that both sides of the debate were heard. But in the US, the girl's fate was decided by a panel of experts at the Children's Hospital in Seattle after listening to a presentation by her father.
Moved by his rhetoric, they failed to challenge his often flimsy arguments. As a result no-one seems to have asked whether increased resources and home support might be a better solution to the problems caused by Ashley's growth than medical intervention. Or if the vetting and monitoring of external carers would be more likely to protect her from abuse than stripping her of her sexuality.
Ashley's parents have spent years crafting their image of their perfect "pillow baby." When that image began to mature (as all babies mature in one form or another), Ashley's parents became catchers in the rye... willing to do anything and everything humanly possible to keep her from diving off that metaphorical --or, more precisely, that all too human-- cliff of Holden Caulfield's nightmare: the inevitable loss of innocence.
My two cents worth: Life is messy. Life is painful. Otherwise, it's just existence.Thus Endeth Today's Sermon.
Go forth today and ask yourself:
Whose innocence is really at stake here: Ashley's or her parents'?
And who will inherit Ashley X when her parents can no longer care for her? Her siblings? The state?
What would you do today if you were Ashley's parents?
Think about it. I mean it, damn it!Best bar bet in the world: Delilah didn't do it.
Judges 16:19-- And she made him (Samson) sleep upon her knees; and she called for a man, and she caused him to shave off the seven locks of his head.