Jemima Lewis: The moral line in medicine shifts once again

Ashley's parents' decision makes sense. And yet instinctively, most of us will still recoil from it
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The Independent Online

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 three-month-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 Ashley'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 infantilising 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.

jemima.lewis@virgin.net

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