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The moral line in medicine shifts once again ; EDITORIAL &OPINION Lewis, Jemima . The Independent ; London (UK) [London (UK)]06 Jan 2007: 37.

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ABSTRACT (ABSTRACT) The international outcry over the case of Ashley X, reported in an American medical journal, shows that there are

still some scenarios that have a universal power to shock. Ashley, nine, suffers from a rare brain condition, static

encephalopathy, which means she has a healthy body but the mental age of a threemonth-old baby. She cannot

walk, talk, swallow, hold her head up or roll over. And now she will never grow up, thanks to a pioneering medical

intervention that her parents have proudly dubbed "Ashley's Treatment".

It sounds so grotesque as to be scarcely credible. But clear-cut moral judgements rarely survive close examination

of the facts. Ashley's parents have cared for her every day of her life, and know her needs better than anyone. As

they explain on their website, "Ashley's biggest challenges are discomfort and boredom" - both of which might be

greatly exacerbated by the onset of puberty.

She would grow too large to be carried in their arms. Hoists and slings would have to be used instead, replacing

the human touch that gives her much reassurance. The extra weight would make her more vulnerable to bedsores.

The difficulty of moving her around would leave her even more bed-ridden than she is already, unable to participate

in enjoyable every day activities such as car trips or family meals. Her parents were concerned, too, about the

perils and pains of sexual maturity. In her state of utter dependency, Ashley can be reduced to tears by a stray hair

tickling her face; how would she cope with menstrual cramps, or with the discomfort of being strapped into a

wheelchair if she had developed large breasts. FULL TEXT The international outcry over the case of Ashley X, reported in an American medical journal, shows that there are

still some scenarios that have a universal power to shock. Ashley, nine, suffers from a rare brain condition, static

encephalopathy, which means she has a healthy body but the mental age of a threemonth-old baby. She cannot

walk, talk, swallow, hold her head up or roll over. And now she will never grow up, thanks to a pioneering medical

intervention that her parents have proudly dubbed "Ashley's Treatment".

Shortly before her seventh birthday, Ashley underwent a hysterectomy and an operation to remove her

undeveloped breast- buds. She was then put on a high-dose oestrogen course to limit her growth. She will

effectively remain a pre-pubescent child for the rest of her life.

It sounds so grotesque as to be scarcely credible. But clear-cut moral judgements rarely survive close examination

of the facts. Ashley's parents have cared for her every day of her life, and know her needs better than anyone. As

they explain on their website, "Ashley's biggest challenges are discomfort and boredom" - both of which might be

greatly exacerbated by the onset of puberty.

She would grow too large to be carried in their arms. Hoists and slings would have to be used instead, replacing

the human touch that gives her much reassurance. The extra weight would make her more vulnerable to bedsores.

The difficulty of moving her around would leave her even more bed-ridden than she is already, unable to participate

in enjoyable every day activities such as car trips or family meals. Her parents were concerned, too, about the

perils and pains of sexual maturity. In her state of utter dependency, Ashley can be reduced to tears by a stray hair

tickling her face; how would she cope with menstrual cramps, or with the discomfort of being strapped into a

wheelchair if she had developed large breasts.

Reading all this, it is impossible not to sympathise with Ashley's parents. Their decision makes practical and

medical sense. And yet instinctively, most of us will still recoil from it. Even in a nation as irreligious as modern

Britain, there remains a superstitious dread of "playing God", and a strong belief in the integrity of each divinely

fashioned human being. The idea of ironing out our flaws or disabilities through science causes consternation, and

rightly so. The slope to eugenics is all too slippery.

Such ideological qualms, however, seldom survive personal experience. When it comes to ourselves and our

families, we throw ourselves upon the mercies of medicine to save us from tragedy or pain. There are now

thousands of children alive who would not have survived infancy 10 years ago. Each one is a blessing to those

who love them, and a fresh challenge to the moral order of our universe.

Once you start tinkering with nature, where do you decide to draw the line - if at all? As Ash-ley's father points out,

"All medicine is about interfering with nature. Why not let cancer spread and nature take its course? Why give

antibiotics for infections?" Science has kept Ashley alive; why shouldn't it be used to make her more comfortable?

The difficulty is that Ashley had no say in her groundbreaking treatment. And even the most loving parents don't

always make the right decisions for their children. With disabled children, especially, there is a danger of in-

fantilising them even beyond the dictates of their condition.

Ashley's parents call her their "pillow angel", because she "is so sweet and stays right where we put her - usually on

a pillow". They seem disturbed by the very thought of their daughter reaching sexual maturity. Given her mental

capacity, they write, a child's body is "more appropriate and more dignified than a fully grown female body". In this,

they are only echoing broader social prejudices: a disabled child is an angelic creature; a disabled adult, with

functioning sexual parts, is somewhat gross.

It would have been possible to stunt Ashley's growth without denying her the often pleasurable sensations of

puberty. (During the Sixties the same oestrogen treatment was used to prevent girls from growing too tall.) And

periods are not a sickness: they are part of the female condition. Does any person have the right to deprive another

of their sexuality, fundamental as it is to our humanity? Or do such concerns cease to matter when there can never

be any question of a consenting sexual relationship?

Modern medicine may save us from immediate tragedy, but only at the cost of our ethical peace of mind. We react

violently to stories such as Ashley's because we are afraid of the miracles we have wrought. Where once there was

just God and fate, now we face an endless panorama of impossible life-and-death decisions.

As individuals, we demand the most cutting-edge medical interventions. As a society, however, we pine after that

state of innocence when periwigged doctors could do nothing more than apply their leeches and pray; a time when

fate made the decisions for us. DETAILS

Publication title: The Independent; London (UK)

Pages: 37

Number of pages: 0

Publication year: 2007

Publication date: Jan 6, 2007

Section: EDITORIAL &OPINION

Publisher: Independent Print Ltd

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Place of publication: London (UK)

Country of publication: United Kingdom

Publication subject: General Interest Periodicals--Great Britain

ISSN: 09519467

Source type: Newspapers

Language of publication: English

Document type: NEWSPAPER

ProQuest document ID: 311096455

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Copyright: (Copyright 2007 Independent Newspapers (UK) Limited)

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