Friday, October 07, 2016

The agony of choice

Sally Phillips may be best known as a comic actor and screenwriter, but it was as the face of a BBC documentary, A World Without Down's Syndrome?, tackling issues that are very far from being a laughing matter, that she most recently appeared on our screens.

Phillips' bias and emotional proximity to the subject was never concealed. In fact, quite the contrary - the fact that she herself is the mother of a child with Down's syndrome is precisely what inspired her to make the programme in the first place, along with the successful development of a new non-invasive and virtually infallible form of screening for the condition.

Not surprisingly, the documentary made for difficult viewing at times, with Phillips understandably finding it extremely hard to listen to and converse with interviewees who saw a diagnosis of Down's as an acceptable reason for terminating a pregnancy. Phillips' fear, which is borne out by some stats (including those from Iceland, where the screening method has already been introduced), is that Down's will end up being screened out, effectively denying the validity of the existence of people like her son.

The general thrust of the argument was that it's not really the scientific advances that's the problem but the misinformation and societal attitudes surrounding Down's. Phillips made a passionate case that those with Down's should be treated with dignity and respect, that having a child with Down's can be a blessing rather than a curse and that a Down's diagnosis shouldn't therefore be delivered (or received) as though it's necessarily a terrible tragedy.

However, the Guardian's Hadley Freeman does make a valid point in noting that even having access to all of the relevant information (the positive testimonies of parents like Phillips as well as the gloomier views of the medical profession) does not necessarily mean that every pregnant woman receiving the diagnosis would then make the same choice as the documentary maker did - and neither should she be expected to. Ultimately, it's not so much about the unborn child as it is about the mother's personal circumstances - armed with the salient facts and evidence, such a woman would be within her rights to weigh up her situation and still opt for a termination. Confronted with a woman who did just that, Phillips seemed unable to comprehend or accept her decision - which, as Freeman points out, just served to subvert the argument, or perhaps even revealed a hidden pro-life subtext.

When Jen was pregnant with Stanley, we refused the screening, partly on the grounds that the currently prevalent method is invasive and carries a risk of miscarriage, but partly because a Down's diagnosis wouldn't have swayed us from going through with the pregnancy. That was us, though, and our relatively comfortable circumstances. Other people need to make their own decisions based on their own situations - and as long as those decisions are informed by positive celebrations of those living and achieving with the condition (as Phillips' documentary undoubtedly was) as well as an awareness of the considerable challenges it poses, then it's up to them what to do.

No comments: