It is a question which contains ascending levels of insidious judgement:
‘Did you know?’ ‘Did you have the test?’ ‘Didn’t you have the test?’
The first simply questions whether or not your child’s diagnosis of Down’s Syndrome came as an after-birth shock, or whether you were prepared in advance.
It acknowledges that prenatal screening is a choice, but with, perhaps, a hint of prurient curiosity as to whether there really is anyone who would choose to continue if they knew in advance.
The second also acknowledges choice, but wonders whether you chose not to test, or were let down by some fault in the screening process. It suggests a hierarchy of empathy: those who fell through the holes in the medical science safety net are deserving of it, but not those who declined screening.
The third denies choice, as it assumes that, because test exists and is (widely believed to be) now infallible, that there is only one, reasonable, responsible course of action – termination.
It seeks to lay blame.
Society expects that people will test and terminate, any who refuse to do either of these things are seen as unreasonable and irresponsible, selfish, even.
It has no empathy for anyone who has a child with Down’s Syndrome because it asserts that they made the wrong choice.
I don’t have an issue with prenatal screening itself: that is not the problem.
The prevailing narrative is that having a child with Down’s Syndrome is the worst thing that could possibly happen, and that the purpose of prenatal screening is to eradicate the problem.
Some countries have declared that they will be ‘Down’s Free’ in the near future.
Since Down’s Syndrome is not hereditary*, but a naturally occurring chromosomal arrangement that appears in all races, and has done so throughout history, the only way for any country to be ‘Down’s Free’ is for it to make prenatal screening and termination ‘compulsory’, not necessarily by law, but by societal expectation and pressure. Peer pressure, if you like.
This is facilitated when the status quo perpetuates outdated, negative stereotypes of the condition and those who have it, and by suggesting that they are a drain upon society but make no contribution to it.
Suddenly ‘test and terminate’ becomes the rational, the responsible, the only, thing to do, as it appears to benefit not only the individual family but all of society.
Lives are measured against each other in financial terms, by their potential future cost to the state in terms of health and social care.
Those found to be potentially more expensive than the average are then compared again, not to another human this time, but against the cost of a prenatal screening programme.
Lives are commoditised; it is their financial profile alone that decides whether they are considered worthy of keeping, or should be disposed of.
None of this takes account of differences beyond the number of chromosomes.
When they do, then the slightly lower life expectancy of those with Down’s off-sets that. In any case, their families pay tax and national insurance, indeed, some adults with Down’s themselves work, and, presumably, pay tax and NI.
If we’re talking about cost-to-society-versus-contribution-made, then perhaps we should start screening foetuses for genetic predisposition to criminal behaviour – the cost of their potential incarceration must be huge.
But that is neither possible nor ethical, nor even desirable: because it’s eugenics.
As I stated above, I am not against screening per se.
As well as offering safe, early detection for those women who would choose to terminate, it could, and should, also be marketed and used to enable practitioners to offer extra-vigilant, possibly even tailored, antenatal care to those mothers who choose to continue with the pregnancy. But this isn’t happening. Perhaps it is deemed too expensive.
The reality of life with Down’s Syndrome in the twenty-first century is that a significant number (you might say even the majority) of families with a member who has Down’s report that they enjoy good quality of life.
Ninety-nine percent of adults with Down’s class themselves as content with their lives, and ninety-seven percent of siblings report being proud of their brother or sister with Down’s.
Nobody is denying that we face greater challenges, sometimes considerable ones, with seventy-nine per cent of parents reporting that they have a MORE positive outlook since parenting a child with Down’s, there is clearly something deeply life-affirming going on in these family relationships.
Although there are many things my son cannot do that other eight-year-olds can, he gives as much as he receives, and has made me a bolder and happier person.
Oh, and many of the proud siblings I mentioned go into the caring professions – and that, my friend, is surely a tangible benefit to society.
In her documentary, 'A World Without Down’s Syndrome', actress and writer Sally Phillips said ‘... if we have a society that is unable to care for people, the problem is not the person’. But society, it seems, does not like to be told that it is wrong.
*except for a very rare form, Translocation.
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