The Eighth Amendment, giving the lives of mother and unborn baby equal significance, makes abortion illegal in the Irish State. There will be a referendum in May giving people the chance to vote on its repeal, and it is currently the topic of much discussion in the media, in the Oireachtas, or Parliament, and on the streets. The politicians are more or less united in the view that the law needs to be updated; what to change it to is the subject of far greater disagreement. There are protests and marches by both ‘sides’, there are people on street corners handing out leaflets, there are women telling their stories.
When we arrived here something that caught my attention often – and still does – was how many people with Down Syndrome there are. Every time I go out I see them waiting at the bus stop, playing at the park, in cafés with friends, walking in school groups, on the bike thingy at the gym, doing their shopping. I see them with carers, on their own, and in peer groups. Daniel’s high school, with a roll of around 300, has a special needs unit comprising two full classes. I think the reason I found it so noticeable to begin with is that, when I came to think of it, I couldn’t remember the last time I saw somebody with Down Syndrome out and about in the community in New Zealand. I know they’re there, of course they are. But as far as I can recall, by the time we left, times that I would see them were few and far between.
Then I read an article, which I can’t reference for you because I can’t remember where it came from, about the very low rate of birth of babies with Down Syndrome in New Zealand, and how, in effect, you could see this as a form of eugenics. We have the technology and the medical expertise to prevent people from coming into the world like this and it’s possible that in the near future Down Syndrome will be eradicated entirely. The author was asking, is this what we really want? Are we making the world a better place by doing this? We can do it, but should we?
Down Syndrome has become the poster child for the ‘pro-life’ movement in the lead-up to the abortion referendum. There is an enormous billboard on the side of our local shops showing a very cute baby with Down Syndrome and the information that in the U.K. 90% of pregnancies with this diagnosis are terminated. Mothers are talking about their children, advocacy groups are saying don’t assume you know how people with Down Syndrome and their families feel about the abortion issue, and, for World Down Syndrome Day, the Down Syndrome Centre has released this lovely video.
As I move through my community here surrounded by people with Down Syndrome living their lives, this is what occurs to me. If I was given this diagnosis during pregnancy when I was living in New Zealand, I imagine I would be scared. I would be worried for my baby’s future. I would wonder how we would cope as a family with the extra stress and medical needs. I would wonder what sort of quality of life my child would have and how they would manage as an adult. Part of the reason for my fear, I imagine, would be that I have no experience with the condition. I have known no children with it and no mothers of children with it. Because it is pretty much an invisible condition in NZ I would worry that my child would be the only one. That he or she would be isolated, different, would be stared at and pointed at by other children who had never seen anyone who looks that way. I would worry that there wouldn’t be sufficient support available, or adequate funding or medical resources, because that’s what happens when a medical condition becomes rare – less money is put into it, less expertise is available, resources are diverted into other areas.
These worries may be unfounded. Perhaps I would do my research and discover that plenty of help is available. I don’t know. But I would still be scared of what the future would bring because it would be a big, huge unknown.
If I was in the same situation here, I would also be scared. Of course. But it wouldn’t be so much of an unknown. Every day I would be seeing children with the same condition as mine swinging and sliding at the playground. Teenagers at the local food court sitting around a table scattered with phones, keys, drinks, chatting away as teenagers do. Adults looking through clothes on the rack next to me in Penney’s. I would know that my child has a decent chance at the sort of quality of life that is worth having. I would know that they wouldn’t be the only one, they wouldn’t be seen as anything particularly out of the ordinary, they would be accepted by other children as different, maybe, but not unusually so. If I wanted to, I could go down to our local village any day of the week and just rock up to a person with Down Syndrome, or a parent, and say, talk to me. Tell me what to expect. Tell me what my child’s life might be like. Be realistic. Tell me the hard parts. Tell me the great parts. Discuss.
I have never been in a situation where something’s come up during pregnancy that has required any major decisions. There but for the grace of God. I cannot say what I would do and I certainly can’t say what anyone else would or should do. It seems to me, though, that if I were pregnant here with a baby with Down Syndrome I would be less scared than if I were in the same situation in a country where it’s so much less visible. And that might make a difference to my decision.
Common sense tells me that in many cases when parents decide to terminate because of fatal foetal abnormality or a diagnosis such as Down Syndrome, it’s not because they didn’t want the baby. At least, not in any higher proportion than with any other pregnancy. In most cases, surely, the baby was planned, loved, and very much wanted, and the decision to terminate would be absolutely heart-breaking. It would be made sometimes out of love for the baby, because nobody wants to bring into the world a child who’s going to experience more pain and misery than anything else, and sometimes out of fear of not coping, of the stress damaging the existing family unit, of the potentially enormous difficulties ahead. For whatever reason, we know that in countries where abortion is freely available, many parents choose it after a prenatal diagnosis of Down Syndrome.
Here’s what I wonder. If you took this group of parents before they made their choice and put them here, in Sallynoggin, Dublin, Ireland for a few months, how many would choose differently? I believe some would. I believe some who desperately want their child, but are worried about whether bringing it into the world would be an act of cruelty, would find at least some of the weight of worry about the unknown lifted, and maybe that would be enough to make the difference. If that were the case, how happy they would be.
This situation, it’s nobody’s fault. Each individual and each society, we have to believe, is doing their best. The cycle of more people choosing to terminate certain pregnancies because of the increasing invisibility of people with various conditions, therefore contributing to this invisibility and perhaps making it more likely that the next parent faced with the choice will do the same, was presumably an unintended and unforeseen side-effect of laws put in place to allow people the freedom to choose the best path for their own family.
I have no idea what the solution is. I doubt that there is one. I am not saying the Eighth should not be repealed. For one thing, abortions are happening plenty in Ireland already, and they’re illegal and unsafe. I would never presume to tell anyone else what they should or should not be doing in such a situation. I am sure that even here, life as the parent of someone with Down Syndrome or any other high-needs condition is often gruelling and stressful. I do know this, though: when I come back to New Zealand to live, I will miss seeing people with all sorts of disabilities out there living life in their community, on a daily basis. That’s all I’m saying.