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Debate in US: Who Should Decide for Disabled People?

Who should decide for the disabled? Can parents arrange surgical interventions on their children, hoping life would become that much bearable// for them? Such questions are being a raised in a beated debate in the US.

Ashley of Seattle was born with a debilitating disorder. Her brain stopped developing when she was only three months old.

She is sensate, she smiles, She seems at times to recognize her family members and to enjoy music. But she can barely move and will never learn to speak.

When she was 6, her parents decided to keep her permanently childlike, easy to lift and thus less prone to bedsores. A series of operations followed.

Her breast buds were removed, in part because of a family history of breast cancer but, more immediately, to accommodate the harness straps that hold her upright. According to her parents' blog, "developed breasts ... would only be a source of discomfort to her."

Her appendix was removed because it was feared she would not be able to communicate her distress if and when she developed appendicitis.

So was her uterus, to spare her the pain of menstrual cramps "or pregnancy in the event of rape."

Ashley is now nine and a debate is raging on the ethics of the actions of her parents and the willingness of the hospital to go along.

Many seem to consider that her parents were right in doing what they did. They did all that only out of love and concern after all. But yet others charge the hospital authorities concerned have acted beyond brief, in deferring to all the requests from Ashley’s parents, without going into the medical necessity of such interventions.

Could her teeth all be removed to spare her the pain of cavities? Or her fingernails so that she wont accidentally scratch herself? Or her kidneys to make her lighter? Ashley's body has been altered drastically only to suit the needs of those around her. Real medical benefits, such as lessened risks of cancers or appendicitis, were entirely speculative, critics argue.

In his new book, Medical Apartheid, medical ethicist Harriet Washington sees sexist, even racist prejudice in the approach of those who laud Ashley’s parents. “It is harder to imagine doctors so compliantly agreeing to castrate a boy, say, in order to allow his wheelchair seat-belt to fit better. Similarly, I wonder if a poor black child would have been so easily romanticized as a "pillow angel."

Though the US is supposed to be the wealthiest nation on earth, Ashley’s parents could not be provided simple medical devices like a simple hoist or mattresses that prevent bedsores. Or the assistance of home healthcare workers. Such things could have precluded such painful invasion of the body, regrets Patricia Williams.

Perhaps Ashley’s parents feared what would happen to her after them. Perhaps she would have to be institutionalized, whereas such homes are awfully managed. Even military hospitals are no exception, it has turned out.

Activists are hence calling for radical changes in the country’s medical care instead of highly arbitrary surgeries on helpless individuals.


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