KEY POINTS:
Ashley X was never destined for marvels. Her mind is locked in infancy and she cannot walk, talk, eat or raise her head.
Undaunted, her parents and her surgeons have made her the hero of a medical fairy tale in which she will have the body of a
child of 9 for as long as she lives.
Her womb and breasts have been removed and hormone treatment has halted her growth and limited her weight to 75lbs (34kg).
The decision by Ashley's father to write an intimate blog detailing, and commending to others, his daughter's drastic treatment has prompted what the media call worldwide controversy.
That is not strictly true. Disabled groups are broadly against the intervention. Some families facing similar problems are in favour. As one parent of a teenage daughter wrote: "Please don't judge until you've tried wrestling a 220lb (100kg) scared child out of the bathtub by yourself."
But the fuss has actually been rather slight by the screechy standards of debates on human engineering.
In America, where Ashley lives, the right to abortion is under constant threat. George W. Bush, in the first veto of his presidency, killed a bill to provide federal funds for embryonic stem cell research.
In Britain, the Government appears to have bowed to pro-life pressure over fusing human DNA with animal eggs.
Despite some emollient words from Tony Blair, scientists believe a ban will be imposed, so depriving people with Alzheimer's and motor neurone disease of the hope of medical breakthrough.
By contrast, the Ashley Treatment, as her parents call it, has been nodded through, untested by other doctors and unmediated by any public debate or court of law.
A shockable society is curiously unappalled either by this casual approach or by the shadow of eugenics.
America's sterilisation of 64,000 "imbeciles" carried on long after Nazism, until 1963, and Sweden ran a similar programme for 40 years.
Maybe routine panic about "designer" humans has been overridden by an equally customary ambivalence about the human calendar.
While, for example, the decision by Patricia Rashbrook to have a baby at 62 was greeted as an affront to nature, turning back the clock is an obsession of 21st century time-surfers.
When so many pay to have age scalpelled from their faces, who dares forbid a gravely damaged child the luxury of surgery that, according to her parents, will make her happier? Besides, the parents claim, a girl's body is "more appropriate and more dignified" to a child with a vestigial mind.
But will that be so when Ashley, who is expected to have a long life, is a pre-pubescent 60-year-old?
The public, in general, is prepared to sanction her adulthood being carved away without consent and this is why. Her parents have done what few in their position can.
They have dared to dream, for themselves and for their daughter. They have procured a narrative and a future for a "pillow angel" who, however grey and wrinkled, will never lose her childhood innocence. Deprived of all other powers, Ashley has the ability to hold back time.
Her fate has invited not only compassion, but also a touch of envy, especially from parents of disabled children.
Ashley, a living doll, bears little resemblance to the heavy, incontinent, sleepless, hormonal, infantile adolescents for whom their parents care with a desperate and equivocal love.
Ashley's surgery, I believe, was permissible, but only just.
Modifying human beings without permission is a sinister business, for all the Peter Pan gloss invoked by her parents. There was something unsettling, too, about a medically explicit blog that stripped every last stitch of privacy from a disabled child.
But, for me, the clinching argument in the parents' favour is that outsiders are far too prone to foist high-minded edicts on those enduring the unthinkable.
Ethics stripped of tolerance and compassion are diktat with a nicer name.
Or, as Ashley's father puts it: "The God we know wants Ashley to have a good quality of life. Knowingly allowing avoidable suffering ... can't be a good thing in the eyes of God."
If only the followers of his deity were always so pragmatic.
In Britain, Lord Joffe's modest bill on assisted dying was blocked, disgracefully, partly in the name of God, and religious groups were cited as prime movers against stem cell work which involves using animal eggs as recipients for human DNA.
If society is less worried by the customising of Ashley X than by life-saving research involving scraps of "Frankenbunny" tissue, then we are truly on the edge of madness.
Human life, it seems, is sacrosanct only at the entry and the exit barriers.
What happens in between, by way of surgical intervention and society's neglect, is neither here nor there.
Hence the row over recent guidelines recommending that babies born before 23 weeks should not be resuscitated, given the grave disabilities the few survivors are likely to face.
"Baby butchers,"screamed the outraged. Yet the council talked perfect sense.
The dying are being forced to cling to intolerable existences, long past the stage of mercy and reason, while more and more seriously disabled children are surviving, only to be denied even basic care.
Right-to-life campaigners, though scrupulously kind to embryos, pay far too little heed to the rights of human beings to good lives and tolerable deaths.
So do not be too shocked by Ashley X. Her rare case may be disturbing, but spurious morality can inflict more damage than a surgeon's knife.
- OBSERVER
