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Abortion and disability
   
 

Who's afraid of choice?
By Ellie Lee
December 7, 2003

The discussion around the legal case brought by Reverend Joanna Jepson - who is trying to get a doctor who performed an abortion on the grounds of cleft palate prosecuted by the police - has confirmed one thing: there is little sympathy today for those who think abortion should be banned outright.

But the case has also highlighted a lack of support for the idea of choice. The most common position taken in response to the Jepson case is one that says: 'I'm not against abortion, but this is a very worrying case.' In effect, individuals are saying, 'I'm for choice - but not this terrible choice'.

Choice is one thing, they argue, but there must be safeguards to stop things 'going too far'. As the Daily Mail's Lesley Garner put it: 'I am a strong defender of a woman's right to make her own decisions on abortion....However, Miss Jepson has raised very important issues about the uses, and abuses, of abortion.' The fact that a woman had an abortion because the fetus had a cleft palate is now cited as evidence that too little is being done to put the breaks on the demands of women seeking abortions.

In some ways, this is an old story. The furore surrounding the 'cleft palate abortion' is reminiscent of cases from the past - like the woman who wanted an abortion 'because she was going on a skiing holiday', or the woman who, in the mid-1990s, aborted one of the twins she was carrying. However, there are different dimensions to the abortion issue now. The sentiment that gave strength to anti-abortion claims in the past - that motherhood should be a woman's main social role - has little resonance today. But other themes have come to the fore.

The first is the notion that we are increasingly consumerist in the way that we think, and cannot tolerate anything less than perfection. It is clear from an interview published in The Sunday Times, under the headline 'Holy War on the beauty fascists', that this is the idea Rev Jepson is promoting above all others. Her claim that abortion for cleft palate shows up the problems with our 'quest for perfection' has dominated the debate.

Journalist Christina Odone argues that, 'Our culture is so obsessed with looks that there are women who think it is better not to be born'. Edwina Currie, the ex-Tory minister who consistently voted against the anti-abortion lobby when she was in parliament, says: 'This is indeed the thin edge of the wedge. What's next? Let's get rid of a baby because it has too big a nose...? Think like that, and it's the end of a civilised world.'

Even though we do not know how profound the cleft palate was in this case, the media have provided numerous examples of people born with cleft palate whose lives have not been marred by their condition. Writing in the Daily Telegraph, Andrew Cullen, who was born with cleft palate and got bullied at school, says: 'I am not against abortion in all cases...[but] this is not an adequate reason, legally or morally, to terminate an unborn child before or after the 24-week deadline.'

The other theme that has emerged around the Jepson case is the notion that we should be distrustful of doctors. As one correspondent to the Guardian put it: 'After the Shipman case and the retention of infant body parts affair, doctors no longer have our absolute trust.... "Trust me, I'm a doctor" is no longer good enough.' Allowing doctors to make judgements about whether an abortion should be take place - which is what the law demands at present - is now looked upon as deeply problematic by some.

In response to these discussions, it is important to point out some basic facts about the provision of abortion in Britain today.

These are its positive aspects: first, it rests on the idea that fetal abnormality is a legitimate reason for ending a pregnancy. The law recognises that there is a difference between becoming a parent to a child with a disability and becoming a parent to a child without a disability. And a good thing this is, too.

In light of the la-la land approach to disability and its effects on families that is promoted by Rev Jepson and others, it is important to argue that abortion and related services, such as antenatal screening, should rightly take issues of disability into account. Women who have abortions for fetal abnormality are not selfishly seeking 'perfection'. They simply do not want to bring a child who is ill into their family.

Cleft palate often causes serious problems. Multiple congenital abnormalities affect 15 per cent of those born with cleft palate, and up to 300 conditions affecting the head and face involve some form of cleft palate. It is wrong for Jepson, and those who have given her a sympathetic hearing so far, to disguise these facts.

It is also important to defend medical judgement and expertise. We are encouraged to expect that doctors with a specialism in the area of fetal abnormality will be able to explain, better than anyone else, what the nature of the diagnosed disability is and what implications it will have. This is a good expectation to have of the medical profession, and on this basis we should be able to trust doctors' judgements.

But while these positive aspects of abortion law should be defended to the hilt, there is no avoiding the fact that Rev Jepson has raised a problem that cannot be dealt with simply by standing by the status quo. What if the fetus in question was affected by a form of cleft palate that was not severe? What should happen then?

In response to such questions, it is no use just defending the law and practice as it currently exists. The problem is that the law does state that after 24 weeks of pregnancy, abortion is only legal where two doctors believe there is 'substantial risk of serious abnormality'. It does not say anything about the woman's views or feelings about her pregnancy being taken into account when the judgement is made. In fact, British abortion law makes absolutely no mention of women's perceptions of their pregnancies, or their rights. It simply says that a woman can only have an abortion if two doctors agree that it is necessary on health grounds.

It is arguable that cleft palate falls short of what many people would term a 'serious' abnormality. There are other 'grey areas' where the legality of abortion for fetal abnormality could be questioned. For example, what if it a woman requested an abortion where a disability was diagnosed, but the screening could not tell how profound the abnormality would be? Would this be a 'substantial risk'?

Presently, such problems are dealt with by arguing that there should be room for 'medical discretion'. This is where a pregnant woman can discuss with medical professionals what the condition affecting her fetus might entail, and, if it seems best, the medical professionals can decide whether to terminate the pregnancy. Abortion might be right for some women but not for others - and doctors should be able to make decisions according to circumstance.

This is a good point, and it would be a step backwards to make medicine more rule-bound, as Rev Jepson is suggesting. The logic of her approach is that highly distressing and sensitive life dilemmas should be handled on the basis of a diktat from judges or parliament, who would provide a 'list' of which conditions are serious and which are not. But with 'medical discretion', surely women are effectively making a choice over whether to terminate a pregnancy that is affected in a way that some would not consider to be 'serious'.

In the end, the only convincing argument that can be mounted against Rev Jepson's case is that when it comes to deciding whether a pregnancy should be terminated or not, the decision must be the woman's alone. It should be no business of Rev Jepson's, or any of the other pundits who have developed such strong feelings on abortion for cleft palate.

Arguing for this approach means arguing that British abortion law as it currently stands is wrong. It is not that the law is too lax, allowing for a 'slippery slope', but that it is too prohibitive; it would be better all round if the law had at its centre the principle of choice. So where the severity of abnormality is debatable, and the risk it poses unclear, a woman should still be able to have an abortion. The woman should make the call.

This should be the case because it is the woman's pregnancy, her future and her family that will be affected by the choice she makes. She will live with the consequences of what she decides to do; and she must have the right to make a choice that others disagree with. If she decides that she does not want to have a child with a facial disfigurement, that is her business. Those who argue that permitting abortion for cleft palate would make society degenerate and immoral are talking rubbish. All it would mean is that the women concerned do not have babies with cleft palate, but might decide to have babies without cleft palate at a later date.

There is another argument to be made. If the legitimacy of abortion abnormality depends in part on 'medical discretion', and whether it is authorised depends in part on the clinician's assessment of the context of the woman's life, why single out disability?

There are many situations where a woman might come to view an abortion as the best course of action, regardless of how upsetting it might be to end the pregnancy. For example, it is perfectly possible to imagine a woman in her twenty-sixth week of pregnancy deciding that an abortion is the best solution for her - even though there is no fetal abnormality. So what is basis for the 24-week cut-off?

What about a woman who discovers at this gestational stage that the father of her child-to-be has been having an affair and is planning to leave her? She might decide that she desperately no longer wants to be a mother. Why is she any less deserving than the woman carrying a fetus affected by Down's syndrome? Both women, if forced to by the law, could probably cope - but I find it quite hard to understand why one woman should get the abortion, but not the other. And why is it that a woman who discovers her partner is having an affair at 18 weeks' gestation can ask to have an abortion, but eight weeks later she cannot?

We need to demand some real answers to these questions, rather than ignore them. But doing that, of course, brings us right back to the law, and the problem at the heart of the abortion debate.

From most politicians' point of view, the way the abortion law was reformed in 1990 was ideal. The point of the reform - which kept abortion legal up to 24 weeks, but made it illegal afterwards unless there was fetal abnormality or risk to the woman's life - was to make it possible for legal abortion to continue, but to stop the anti-abortionists generating endless parliamentary debate about it. As Kenneth Clarke, then Tory health secretary, told the House of Commons: 'This is a suitable opportunity for the House to have a day at the end of which it can come to a conclusion, which should last a long time, on the time limits and future operation of the 1967 Act.' This was taken as a 'direct warning to anti-abortionist MPs not to use the private members' bill procedure again to bring about changes'.

The best way of stopping anti-abortionists from doing this, it was argued, was to make a concession to them on the time limit on abortion (previously taken as 28 weeks), but also to make the case for a new higher limit of 24 weeks on the basis of medicine. The spirit of the 1990 reform was clearly summarised in The Guardian:

'The vote to bring down the upper time limit for most abortion...displayed a cool pragmatism in the face of hysterical emotion and marches in step with the vast body of public opinion.... The legal premise that abortion could take place until 28 weeks' gestation....has simply been overtaken by the march of science.... Most medical opinion now agrees that an infant is capable of sustaining independent life at 24 weeks, and in practice the vast majority of abortions already take place within that limit.... So reducing the limit to 24 weeks is a sensible acknowledgement in law of current reality already acknowledged in practice.'

In reality, the new amendment changed little. The number of abortions carried out after 24 weeks, for reasons other than fetal abnormality, was already tiny. (In 1989, the year before the Act was amended, 22 abortions were performed after 24 weeks; of these, 18 were for fetal abnormality and four to save the woman's life.) But in social and political terms, the 1990 debate was highly significant. It set it place a way of thinking about fetal life, which has become more and more ingrained since.

From this new view, 'fetal viability', as determined by how effectively medical science can allow premature babies to survive, became the means through which there can be a 'scientific' definition of when personhood begins. What this means, of course, is that the woman is entirely absented from the issue. It is almost as if she does not exist.

In the 13 years since the 1990 reform, this way of thinking has been set in stone. Almost everyone now seems to think that a fetus is a 'person' at 24 weeks (overlooking the fact that for a woman considering an abortion the fetus is still inside her body; and that at 24 weeks a fetus that has been delivered can only survive if it is hooked up to an incubator for weeks - it is not even capable of managing basic survival, never mind being a person in the more philosophical sense). Abortion after 24 weeks is now seen as being beyond question, unless there are exceptional circumstances. What the woman might want has come to matter little.

Indeed, things have gone further than this, really. While 24 weeks is the official limit for legal abortion, anything other 'early' abortion (this is before 12 weeks) has come to be viewed as more and more suspect. 18 or 19 weeks is now seen as pretty 'late' and in reality, abortion at this stage is much harder to access than that earlier in pregnancy. In many parts of the country it is only available because doctors employed by the specialist abortion provider BPAS will perform them. Women are, in fact, sometimes told that abortion at this stage may well not be available, unless they 'go private' and pay for it themselves. The notion that women who request abortion at this stage should be treated the same way as those who present earlier does not guide abortion provision. For women, this is a big problem and it needs to be confronted. This can only be done if the viability distinction is challenged.

There is no doubt that raising issues about these aspects of the regulation of abortion and its provision is something few want to do. This is because the logical consequence of doing so is to draw the conclusion that, to put it bluntly, choice is choice. I know from my experience of making this point that some people - those who are pro-life and some of those with disabilities - get very upset about it. But it is hard to see how this issue can be avoided if we are to have an approach to abortion that is fair, coherent and moral.

There is an opportunity now available to those of us who wish to take it, to make the case for this approach. This means arguing for choice. That is choice Full Stop. That is for abortion to made available to women, as we used to argue in the 1980s, as early as possible, but as late as necessary. And that is for a new abortion law that finally accepts that it is the pregnant woman who has the responsibility, and therefore must have the right, to decide whether to have an abortion.

 
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