Down Syndrome, reproductive choices and the need for a social welfare state
On January 2nd, the Irish Times reported that Irish women have been advised to start having babies younger. The contextual hypocrisy aside (think housing crisis, sky-high childcare costs, poorly paid graduate jobs – the list goes on), one aspect of the story jumped out: Dr. Fishel, of a Dublin IVF fertility clinic, said that Down Syndrome occurs in one of 700 pregnancies in women aged 32, while the same figure for women ten years older is one in 67, and 70-80% of a 40-year-old woman’s eggs have a chromosomal abnormality. Why it’s important? Because Irish women aren’t having enough babies to keep society going with our ageing population. We need to keep producing healthy, productive sprogs.
Last weekend, Down Syndrome appeared in the media yet again, as the Citizens’ Assembly met to consider the medical, legal and ethical implications of ante-natal screening and foetal abnormalities. 40 Irish women, they were told, had abortions last year after screening showed that their babies would have Down Syndrome.
The assembly was also informed that no babies with Down Syndrome have been born in the past four years in Iceland, where highly accurate non-invasive screening procedures are standard, and the development in Denmark, where screening routines are similar, is going in the same direction. The point Professor Peter McParland, director of Foetal Maternal Medicine at the National Maternity Hospital, was trying to make was that “science has got way ahead of the ethical discussion”. And we don’t want that, do we?
This is nothing new. I wrote about my thoughts on the situation in Denmark back in 2012, when a Swedish opinion piece posed a question similar to McParland’s: How narrow can the perception of the perfect child get? It’s an interesting and important question from a philosophical point of view, but when asked in the context of the reproductive justice discourse it becomes puzzling at best – not least because monitoring pregnant people’s motivations is tricky. Do you qualify for a termination if there are multiple reasons behind your request, not a diagnosis alone? If you expressed a wish to terminate before you even got the screening results, will your motives seem noble enough? If you’re broke and lonely and depressed and have no one around to help, and the chromosomal abnormality is deemed extremely serious, do we sympathise enough to budge on the moral high ground?
More often than not, the answer is no, because these arguments have little to do with concern and compassion and a great deal to do with religious, dogmatic principles. The more you pick them apart, the more these concerns tend to fall into the ‘slippery slope’ category (‘if they can terminate for this, they’ll soon be terminating for that’), which follows on from the idea that women are both cold-hearted and hysterical at the same time and don’t know what’s best for them; that the right to choose is not absolute, but must be handed down to women on a case-by-case basis. The slope in the analogy leads straight down into an imagined promiscuous hell, where women can engage in sexual pleasures as they please, almost without consequences.
Of course, talking about the kind of society we want to live in is incredibly important – I reiterate this every time it’s time to go out to vote. But is a concern for babies with chromosomal abnormalities and the kind of society we want to live in really, in practical terms, naturally linked to the view that reproductive choice must be restricted, with forced pregnancy and parenthood suddenly being a-ok?
Two weeks, two stories. And the takeaway? We should start early to minimise the risk of Down Syndrome – but if we terminate a pregnancy due to a chromosomal abnormality, we’re ethically compromised. We should want to avoid it – yet struggling to embrace the reality if we fail to avoid it is just not on. The hypocrisy is mind-numbing.
What’s ironic is what these two unrelated news stories have in common. Firstly, neither really has anything to do with Down Syndrome; they just use it, crassly, for the benefit of their own argument. Secondly, they rope in women’s sexuality as a tool to get what they want. The goal of the first news piece is optimal reproduction and an increased birth rate, and Down Syndrome is used to convince women to reproduce as required – whether they want to or not. The goal of the second is continued restrictions on abortion access, and Down Syndrome is used to convince those on the fence that liberalised abortion laws are ethically questionable. Both are straw-man arguments, because the crux here isn’t that women aren’t aware of the risks involved with postponing trying to conceive, or that they view people with Down Syndrome as in any way less human or worthy. Still we keep having babies later, and more advanced screening programmes lead to fewer Down Syndromes babies being born – so why on earth is no one asking why?
The third thing the two stories have in common is the solution (hint: it’s not the policing of women’s bodies). Ask the parent of a severely disabled child what they want. Ask a woman trying to conceive aged 43 what she would have wanted years ago. Support and a solid welfare state would go a long way; the modern individualist mantras we are continuously sold today are likely to receive less praise.
What we need is a shift in attitudes and a hugely increased support system, where you don’t need two degrees and a handful of unpaid internships in the bag before you can get paid work, and an additional ten years of career building before you can buy a house; where you can become a parent and afford to return to work should you want to; where the rental market is regulated, secure and tenant-friendly enough that long-term renting is considered a perfectly good option for a family with kids; where we don’t have to talk about childcare costs as ‘a second mortgage’; where social services are built on social values, not financial measures and market logic; where being a single mother does not automatically equate to being the lowest rung on the ladder of society; where you can become a carer of your much-wanted, disabled child and society is there to get you through. Laws controlling women and making them into vessels for steady population growth just won’t work – nor will fake concern for children with Down Syndrome that does nothing but pit them against the people who love them most.
Rule of the people, anyone? On democracy and the system being broken
Look, I don’t mean to be patronising. If you’ve been to school, you know this; you’ll know it like the back of your hand. But today, it feels like perhaps we need to go back to basics.
The word democracy means ‘rule by the people’, derived from the Greek ‘demos’, for ‘common people’, and ‘kratos’, for ‘rule’ or ‘strength’. Democracy, in other words, is a form of government in which political control is exercised by all the people, either directly or through elected representatives.
Ireland is a parliamentary, representative democratic republic. Scrap the ‘directly’ bit from the definition above: representative democracy is a form of government in which power is held by the people and exercised indirectly through elected representatives who make decisions – and who are then held accountable for their activity within government.’
Now to the elements of direct democracy. When does a referendum need to be held? Whenever, says the Citizens Information website, the government wants to change the constitution. This is interesting, especially today. Is it when the government wants to, or the common people? If the former differs from the latter, how do we hold the government to account?
Cynics may say, bluntly, that we hold them to account by not reelecting them when it’s time for another general election. But what if the government is actively preventing a general election being called, using tactics so undemocratic that they should, by any democratic definition, be kicked out of the Dáil with immediate effect?
Year on year, the March for Choice grows, explosively. Every day, pregnant people break the law by necessity as they import and swallow pills to induce a miscarriage. Elected representatives put forward bills proposing a referendum to let the people decide whether it’s time to amend the constitution with regards to a change in attitudes towards reproductive rights. And as the government realises it’s divided on the issue and a vote would likely lead to collapse, what does it do? It blocks the bill, instead pointing to the process of a Citizens’ Assembly – yes, another group supposedly representing the people, just not actually democratically elected – to avoid having to make any decision on the issue at all.
To be clear, we’re not talking about making a decision on reproductive rights. We’re talking about the decision to call a referendum to let the people, the common people, decide. What was that definition of representative democracy again? Oh yes, representatives who make decisions. How can we hold them to account when they refuse to make decisions out of fear that they’ll trigger a general election?
It’s a shambles, and it’s not democracy. There’s no sense of rule or strength on the part of the public. We feel ignored, helpless and increasingly angry.
Judging by the government’s current tactics, the timeframe discussed for the Citizens’ Assembly, and the processes involved in preparing for a referendum, any change to the 8th amendment is years away. Just by the end of this year, another 850 people will have left Ireland to access reproductive healthcare elsewhere. Many more will have taken the abortion pill at home or remained pregnant against their will, and thousands will have gone through the maternity system without the right to informed consent.
I’m off to the Dáil to rally. I’m tired, and I’m losing respect for the people supposedly representing us. Who knows what the strength of the common people will look like if nothing changes soon? The system is broken.