Peace at a terrible price

Published on Sunday 7 January 2007 00:54

THERE is nothing like reading the bile poured out by online commentators to make one feel sympathetic towards the target of their latest vitriol. Cloaked in anonymity, and making no apparent attempt to empathise, they heap judgment on the desperate in terms more resonant of a Borat set-up than mature debate.

When Ashley X's parents chose to go public last week to defend their decision to "freeze" their severely handicapped daughter in time, to give her surgery and drugs that would offset her puberty and halt her growth, I guess they anticipated a bit of a backlash. Whether or not they were prepared for the onslaught of insults their decision has provoked ("What a sad, sick example of laziness, selfishness and stupidity," was among the more restrained offerings to their own website) is another question.

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.

In their statement - published on a website in the face of an escalating debate - they insist their decision was an easy one, driven solely by the desire to remove the discomfort of menstrual cramps and large breasts, and ease the general difficulty of coping with sexual desire when you have the mind of a very small child. "The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal to maximise her quality of life," they say, with confidence that could be mistaken for arrogance.

It is the apparent lack of any inner struggle, and the obvious incongruity between the moderate discomfort caused by the symptoms of puberty and the major discomfort of surgery that has, I think, set the online moralists ranting.

A close reading of their statement, however, reveals more complex motivations, which, while making them seem more human, confirms suspicions that their actions are not entirely altruistic. "We are currently near the limits of our ability to lift Ashley at 65lbs. Other than her mom and dad, the only additional caregivers entrusted to Ashley's care are her two grandmothers, who find Ashley's weight even more difficult to manage," they say, betraying the extent to which their own discomfort was, indeed, a consideration.

There is, of course, nothing wrong with carers demanding that their own needs be taken into account. The only thing as abhorrent as the notion that the severely disabled have no human rights is the idea that theirs are so important they supersede everyone else's. In order to be fair to their entire family, Ashley's parents had no choice but to try to balance her needs with their own and those of her younger siblings as best they could.

Nor is there any strength in the argument that surgery stripped her of dignity: being doubly incontinent and unable to feed herself would surely have done that if, in fact, she had been able to understand the concept in the first place.

And yet, can depriving any human being of a fundamental part of their identity ever be justified? And if anyone is to be trusted to weigh an individual's prospective discomfort against their right to grow, should it not at least be an impartial observer?

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.

It's too late for Ashley now. Now nine, she is trapped in time, unaware of the debate that rages in internet chatrooms. There, her parents continue to be portrayed either as self-serving Frankensteins or heroes carving out a better life for the disabled.

But the sense I was left with was of a couple driven by fear: a fear not of daily discomforts such as menstrual cramps or heavy lifting, but by the possibility that puberty might in some way disturb their daughter's serenity. The very way they describe life with their "pillow angel" - how the whole family is drawn to the calm of her room, how they huddle round her, holding her hand and "sweet-talking her" - has the dream-like quality of a tableau in an old book.

In that sense, Ashley X's parents are not so different from the rest of us. We all have Catcher In The Rye days; days when we wish we could hold back the years, keep our children innocent, and excise any possibility of future pain. But our children's destiny is not within our gift. Nor should it ever be.