Wales has recently become the first country in the UK to introduce Non-invasive Prenatal Testing on the NHS. In the wake of this ITV Wales aired a programme entitled ‘The End of Down’s Syndrome’, which examined what life is like with Down’s Syndrome, and on the concerns expressed by many parents of children with Down’s Syndrome that this screening will lead to an increased rate of terminations of babies with DS.
‘It’s none of their business what other women do,’ said one commenter, on the thread below the preview clip I watched on social media.
This might seem like a valid point, on the surface, but it isn’t. It’s misses the point entirely.
We are not concerned about the personal choices of individual women, but with the effect that such screening, and the resulting terminations, will have on public attitudes to Down’s Syndrome (and disability in general).
What message does Prenatal Screening send out to society about Down’s Syndrome?
When a particular test is routinely offered to pregnant women, and paid for out of the public purse, it leads us to assume that the test confers some valuable health benefit to either mother or baby. In fact, Non-invasive Prenatal Screening carries no health benefits whatsoever for either party. The sole purpose of screening is to detect certain, selected, genetic conditions so that the parents can be offered the chance to terminate the pregnancy. You might assume, therefore, that the conditions selected for detection are among the most serious, bringing severe disability and intolerable suffering to those affected, or even that they might somehow be dangerous to the human race if left unchecked. The message sent out by the culture of Prenatal Screening is that life with these conditions is not worth living and any person affected by them would be better off dead.
This is completely at odds with the message sent out by people with Down’s Syndrome themselves, who typically report being happy with themselves and with their lives. Down’s Syndrome is NOT a severe disability: it causes only mild-to-moderate learning disability, and though it brings an increased likelihood of certain medical conditions, these are by no means inevitable, and almost all are treatable or manageable, and can also occur in the general population. People with this condition do lead meaningful, fulfilled lives: many find employment in all kinds of different capacities, enjoy hobbies, and travel, have friendships and romantic relationships.
So why have these conditions been selected for screening?
The real reason these conditions have been selected is because the existing technology allows us to identify them easily before birth, and in the case of Down’s Syndrome, is common and commonly-known enough for the big Pharma companies to make a fat profit by playing on parents’ fears of this much misunderstood condition. The pharmaceutical giants are not altruistic organizations which operate for the good of public health. They exist to make profit.
But what about a woman’s ‘right to choose’?
Women should have the right to choose if, when, and in what circumstances, they bear children. But when you consider termination for abnormality, the issue ceases to be about women’s rights, and becomes an issue of human rights, in the wider sense: because it is at this point that the rights of women and the rights of disabled people intersect, and come into conflict. In the UK the unborn child has no protection in law because it is not yet considered legally to be a separate person from its mother. But it is not only the lives of individual disabled not-yet-persons, i.e.foetuses, that are affected when we offer abortions to women solely on the grounds that their baby will be born with a disability. Disabled people already living are affected by a public mindset that considers the life of a disabled baby disposable , because it fosters the idea the lives of disabled people are worthless, that disabled individuals themselves have no worth to society, are a burden to it, and would be better off dead or got rid of. This in turn leads not just to the obvious issues like hate crime, but to a complete failure to consider the needs of disabled people and make provision for them. It also leads to a general lack of will to understand WHY we should accomodate them, because they become non-people in the eyes of society. It leads to the situation in which people with learning disabilities die preventable premature deaths every day due to delayed or inappropriate treatment, abuse and neglect, and in which their untimely deaths are not deemed worthy of investigation. This is already happening now and will only get worse the more society cheapens the lives of the disabled by treating their rights as of less importance than those of other population groups.
So, are we saying that a woman shouldn’t have the ‘right to choose’?
A choice in which only one possibility is offered is no choice at all. Contrary to popular understanding (or misunderstanding) prenatal screening does not increase a woman’s right or ability to ‘choose’. In practice it is used as a tool to direct women’s choices towards one particular, socially approved, course of action. The way that the test, and the result, is presented often makes it very difficult for a woman to make a fully free and informed choice.
It starts at the booking-in visit – a mother’s first appointment with her antenatal care providers. Often women are told that certain tests are ‘required’, but no attempt is made to distinguish between the tests which monitor the ongoing health of mother and baby, and the antenatal screening tests, which are entirely optional. Where tests are presented as optional, or if a mother questions or refuses the test, it is insinuated that the tests are for her own good and so it would be foolish to refuse. In fact, the screening test confers no health benefits at all on mother or baby. Women are being led to believe that NIPT is safer than the old triple test because it is more accurate, and, therefore, avoids the need for the more risky amniocentesis. Though NIPT is more accurate than the old triple test, it is not accurate enough to be fully diagnostic. In case of a high-chance result an amniocentesis is still required to provide 100% certainty. NIPT can produce both false positives and false negatives.
Mothers, like myself, who discover before their baby is born that it will have DS commonly report that the information is delivered to them in a very negative way: a grim-faced doctor talks about ‘bad news’ and gravely reels off a list of complications which, he/she says, are ‘likely’ or even ‘inevitable’. Often the information is outdated or inaccurate, remembered from their student days, or it contains assumptions and stereotypes. My consultant hinted that having a child with DS would break up my marriage (when, in fact, research shows it tends to be the opposite). Often little or no attempt is made to guide the woman towards other sources of information, such as the Down’s Syndrome Association or local support group, which might provide more up-to-date, useful information and a real-life perspective. In my case, when I asked the genetic counselling nurse for some info on DS, she told me that she didn’t have any. The only help she could offer me was to expedite the appointment my consultant had made for an amniocentesis, so that I could terminate as quickly as possible if it was positive for DS. I cancelled the appointment as I had no intention of terminating. Within hours of his being born, however, she came up to the ward with a whole sheaf of really great booklets from the DSA. Where were they when I asked for them?
My experience was not unique. It seems common practice to treat any suggestion of continuing a pregnancy in which Down’s Syndrome has been identified as transgressive and unwise, and any woman behaving in this way is dealt with in a manner which seeks to undermine her confidence, and correct her decision. There are many documented cases of women whose care-providers have booked them in for a termination by default, without asking her if that is what she wants, and without her having expressed a wish not to continue the pregnancy. There are many cases, too, of mothers who have chosen to continue with their pregnancy being repeatedly asked if they are sure they won’t reconsider and terminate, in some cases even beyond the usual legal limit of 24 weeks: because doctors in some health trusts are prepared to invoke Ground E (which allows for abortion up to birth in cases where the foetus will be born with a severe or life-limiting disability) for more minor conditions such as Down’s Syndrome or cleft palate.
It is natural to fear the consequences of doing something which is viewed as transgressive. Society has a way of policing our behaviour by hanging the threat of social ‘sanctions’ over our heads, in order to steer us towards certain behaviours or courses of action that are considered ‘correct’, or socially acceptable. Nobody wants to find themselves judged, ridiculed, or shunned and ostracised by their family or community, so we toe the line in order to avoid it. In a society which is conditioned to view disabled people as being non-productive, burdensome ‘sufferers’ whose lives are of no value (invalid), abortion of the disabled foetus becomes not just the ‘wise’ or correct course for the individual, but also the socially-responsible one, enforced by society’s unwritten code of punishment. What was a woman’s choice is now tantamount to a duty.
But shouldn’t it be our duty to prevent suffering wherever possible?
People with Down’s Syndrome do not suffer from it, or because of it: and they will tell you this themselves, eloquently, if only you will listen. Their families do not suffer because of it, either: just ask us what our lives are like and we will tell you. Most women, however, listen first to the word of doctors, midwives and other people who have no real-life experience of what it is like to live with and love a person with DS. To claim that aborting a foetus with Down’s Syndrome is an act of mercy that will prevent suffering is blatantly untrue – a complete nonsense. Let’s be clear: abortion for Down’s Syndrome does NOT prevent suffering.
It causes suffering.
It causes a lifetime burden of grief and guilt to the mothers who are forced to take this agonizing decision; mothers carrying a much-wanted, possibly planned and deliberately conceived child, who have been directed, steered, almost co-erced, into believing that abortion is the only viable option. It is no coincidence that maternal mortality rises in the years following termination of pregnancy. ‘What’ and ‘if’ are two very small words, but when put together they weigh heavy on the human soul.
Performed under these circumstances abortion ceases to have anything to do with ‘a woman’s choice’ and becomes an act of violence both against women and against the disabled population. It is eugenics sneaked in by the back door, disguised as healthcare.
So, no, we are not poking our noses into other women’s business, we are poking our noses into society’s business – to sniff out what stinks.