There's more to life than being Joe Normal

As medical technology allows us to avoid 'abnormality', we risk seeing difference as an illness
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The Independent Online
Lord Ashley of Stoke, the former Labour MP, was deaf for 24 years after an operation that went wrong. But he can hear now thanks to a device, surgically embedded in his skull, known as a cochlear implant. Lord Ashley is overjoyed and has now become an energetic proselytiser for this new technology. He was lucky. The implants, which cost pounds 26,000, are most likely to work when fitted before the age of 10. Now he wants to ensure they are available to as many deaf children as possible.

Few stories would seem to be more free of controversy - a serious disability is successfully overcome by medical technology. Who could possibly complain about that? Well, first there is the British Deaf Association.

"Deafness," says its spokesman David Nicholson, "is not a pathological defect to be cured."

And some deaf parents refuse the implants for their deaf children, claiming they are an attempt to "normalise" people who are not ill at all, only different. Deaf culture is as real as any other culture and the deaf experience is as valid as any other. "If you were black," as one of Lord Ashley's opponents remarked, "you wouldn't have an operation to make you white."

The argument will shock most people. Deafness is such an obvious disability, such a fundamental lack, that to defend it as a desirable state seems insane. Certainly we may define deaf people as a minority with special requirements, but to define them as a minority, like blacks or homosexuals, who ought positively to celebrate their condition appears to be yet another case of political correctness gone mad. Surely anybody, given the choice, would, should wish to hear.

But what about short people? Growth hormone can now be administered to children in danger of growing up short. Yet what is short? Is, for example, a 5ft man disabled or is he merely at one end of a statistical distribution of human heights? Many American parents now have growth hormone administered to boys who may grow up to be, say, 5ft 4in, arguing that, in contemporary society, average or better than average height is a crucial determinant of success. People who would normally be classified as dwarves object, saying that such applications of medicine reinforce corrupt social mores that discriminate against shortness. They, like the deaf people, say they are not sick, merely different.

The issue is normality and it will be one of the central ethical debates of the next decade. Technologically we are now approaching a position in which we shall, in a range of areas, be able to choose to be as close as possible to the centre of the statistical bell curve of normality. Already we can choose, in vitro, embryos for implantation that do not carry the genes for, for example, cystic fibrosis and discard the rest. Soon we shall be able to do the same for any number of conditions and predispositions. And if easy, cheap, risk-free prenatal testing becomes available, as it will, then potentially all hereditary handicaps or shortcomings may be eliminated by abortion.

Aborting a foetus with muscular dystrophy is one way of saying to people with that appalling condition: you should not have been born. Already parents with Down's syndrome children say they have been made to feel guilty because the condition can so easily be detected before birth so why did they not abort? Knowledge inverts traditional virtue - where once it would have been regarded as saintly to care for a handicapped child, now it becomes a wrong to yourself, the child and to a society that must bear the costs.

The clear point here is that the handicapped lobbyists are right. However smart we get the handicapped will always be with us. One third of muscular dystrophy cases arise from spontaneous mutation rather than heredity and are, therefore, not going to be detectable prenatally. Similarly most Down's syndrome children are born to young mothers who are not going to be tested. So, quite apart from the absolute injustice of the idea, any suggestion that the handicapped should not have been allowed to be born is not sustainable.

There will always be many people far from the normal majority. However, our ability to narrow certain curves - the distribution of deafness or shortness, for example - puts a new pressure on us all, the pressure of normality.

Of course, we all value human variety. At the most obvious level it is clearly desirable that people experience and understand the world in different ways. All art and innovation spring from imaginations that are, at least to some degree, abnormal. And even the most normal of us would live lives of undifferentiated drabness and selfishness were we never to come into contact with alien perspectives and different experiences.

Even cases of what seem to be evident handicap offer important versions of human experience. The world of the deaf is part of human culture. But, you might say, so is the world of the smallpox sufferer and nobody argues that suppressing that disease was a bad thing. Yet the spectrum of abnormality that runs from smallpox to deafness to shortness is not divided by clear moral lines. Evidently we would rather not have smallpox and, perhaps equally evidently, we would rather not be short. But the question then becomes: do we want everybody to be about the same height as us? Or: what is so special about my height as opposed to yours?

Yet, however much we may value variation, when it comes to ourselves or our offspring, our courage tends to fail. There is nothing, you might say, wrong with homosexuality - but what if some future genetic test told you that the child you were carrying was destined to be gay? Being 5ft tall is not a moral condition - but would you accept growth hormone for your son if you were told that was his untreated fate? The pressure to be normal may sound repellent, even totalitarian to the individualistic, liberal mind. But, in truth, it is a pressure that is embedded deep within us all because we fear the consequences of abnormality.

So the deaf lobbyists who oppose Ashley's crusade have a point. Their argument is that the hearing have no right to define something as a problem and then to impose a solution, to impose normality. I find this hard to accept because to be deprived of the audible world seems such an appalling fate, whatever the compensations of deaf culture. Nevertheless, their argument is profound and it foreshadows future dilemmas that will call into question our basic sense of ourselves and the world.

What is absolutely clear is that the human world was born of and thrives on variety. With the acquisition of the power to suppress some of that variety we must fight the tendency to stigmatise anything that can reasonably be regarded as healthy variation. If we do not then we are heading for the tyranny of the normal, a reign that will be as destructive as any other despotism.