A C Grayling: Squeamishness will not help Ashley X. Her parents are right to put their trust in science

Many of our moral attitudes increase suffering in the world
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The Independent Online

All the most difficult moral dilemmas are those in which the opposing considerations are each powerful, and each aim at a genuine good. Such is the case of Ashley X, the severely disabled girl of nine who is suffering from static encephalopathy and has a mental age of three months. She cannot talk, eat or sit up unaided, and her parents and doctors in the US have acted to keep her not only small in size but physiologically unable to develop into a woman.

In a blog written after details of Ashley X's case became public, her father explained the reasoning that had led to her being sterilised and given growth-inhibiting treatment. It was done, he said, to ensure that Ashley could be looked after better. It was done so that she could be carried more easily, and therefore have more chance of social interaction and opportunities to go outdoors and on trips, than she would as a helpless adult. In the latter case she could be condemned to bed all day, at risk of the diseases of inactivity.

And it means she can be cared for at home by her family instead of being institutionalised, which would happen if her family could no longer physically manage her. And in the latter case, being permanently pre-pubescent physiologically would reduce the risk of sexual assault.

Three years ago Ashley X had her uterus and breast glands removed to prevent pubescence, and was put on oestrogen treatment to inhibit growth. Critics of what was done to her - and some of the criticism has been ferocious - say that she has been forcibly sterilised and stunted solely for her parents' convenience, that she is a Frankenstein monster created by cold logic, that her rights and dignity as an individual, whether or not disabled, have been violated.

One thing missing from the reactions has been a sense of the terrible predicament of the caring family. As a massively disabled individual grows into an adult, every difficulty of care is magnified exponentially. Middle-aged or elderly parents having to heft the dead-weight of an adult any number of times a day, to prevent bedsores and lung congestion, to change nappies, to help him or her eat and drink, is an almost unimaginable burden - and this is apart from getting such a person into a wheelchair for an outing every day. That is why so many victims of severe disability have to go to institutions. What looks like an invasion of human integrity in Ashley X's case might be the best way of helping her to a better life because it can be manageably lived with her family.

The critical reaction is understandable but, as these thoughts suggest, misplaced. It is understandable because a flock of associations gather as soon as one hears that Ashley X's parents and doctors decided to sterilise her by surgery and medicate her to inhibit growth. In India and Africa parents have sometimes been known to lame their children deliberately to make them more effective beggars. Nazi doctors forcibly sterilised gypsies and other "undesirables". Visions abound of a future in which human beings are genetically engineered or pharmacologically manipulated to make some of them tall and beautiful and to turn others into uncomplaining workers. The emotional revulsion against these things lies behind some of the reactions here, too.

The phenomenon is one of moral squeamishness. The term "squeamishness" is appropriate and not flippantly intended. As an illustration of how squeamish attitudes can make matters worse when we should be bold enough to make them better, here is an example minor in comparison to the difficult and tragic case of Ashley X, but in its own small way educative. My children once had a small pet which one night suffered an awful accident. The vet advised, on the telephone, that we end her sufferings by breaking her neck with a twist of the hands. I could not bring myself to do it. The vet then advised putting her in a plastic bag, placing the bag under the wheel of the car, and driving over her. I could not bring myself to do that either. The result was that she died slowly and agonisingly through the course of a long night. Afterwards I was appalled at the unkindness my squeamishness produced; for the truth is that it masked moral cowardice.

Many of our squeamish moral attitudes increase suffering in the world in this way. In the case of our fellow human beings, who are our primary concern and who rightly demand the tenderest respect and most careful thought, our inability to agree on euthanasia for people who want it, our objections to stem-cell work, medical cloning, and other scientific research aimed at curing or palliating human suffering, is sincerely motivated by a desire to put human life at the forefront of moral concern, but often stands in the way of doing just that.

Sometimes we do not even make ourselves ask the question: "What is truly in this person's best interests?", and instead consider only what we can bear to do and not to do - in short, what is in our own emotional interests. No person of ordinary sensibility could tolerate the idea of doing to a normal child what Ashley X's parents have done to her, and they export that perfectly understandable sentiment to her case. But she is not a normal child, and her carers are trying to make her future better by logical and practical means. It cannot be in her best interests to become increasingly difficult to move and carry, to have to leave her family home perhaps, and in that case to be a sexually mature woman lying helplessly in bed in an institution. If someone said, "Surely everything should be done to make it possible for Ashley X to stay with those who love her most and will care for her best", everyone would agree. It is the means that divide opinion.

Some critics say that real help for Ashley X would consist in providing the assistance and equipment that would give her the quality of life her parents want for her without surgery and growth-inhibition. That is an option where possible: a very costly one. If society would really help carers bear that cost, it would make the dilemma over Ashley X unnecessary. As it is, what Ashley X's carers have done is to try to care for her best.

A C Grayling is professor of philosophy at Birkbeck College, University of London