Two days ago I wrote a piece for The Spinoff Parents. I had just seen an article about Sally Phillip’s documentary “A World Without Down Syndrome”. In the Guardian article she discusses her concerns over making the non invasive screening tests for Down Syndrome available through the NHS.
After reading the article I read another one where the documentary was labeled “unhelpful” to parents already making difficult decisions, and I realised the predicament I was in. My mind turned over and over a whole series of thoughts and emotions about it and I started to write. I hadn’t quite figured out how I felt, but I knew I felt conflicted and that that was obviously because of Eva and everything that has happened to me since her birth.
I wanted to be clear and honest in my piece that termination was something I would have considered myself. I didn’t want that to be hidden or as if I was denying something. I wanted to express how important it is that women have that choice. But I also wanted to advocate for people with special needs and disabilities. I wanted to express the loss I felt when thinking about a world without that kind of difference and diversity. I knew I was playing a dangerous game, but I wanted to try and puzzle this out. It felt, and feels, important enough for that.
After the piece was published I kept a close eye on my phone, waiting for it to ding with someone telling me what a horrible person I was for admitting that if I had known about Eva’s conditions in utero I would have terminated. I braced myself for it. It never came. Instead, I got the opposite. Instead of telling me off for admitting my own story, I was told I was being moralistic and putting the future population numbers of Down Syndrome on individual parents who are already making very hard decisions. I was told I was using “anti-choice rhetoric”. I have felt a bit sick for days at those words.
I’ve been mulling it all over since Tuesday and while part of me is telling me to stop and just leave it, the other part has been continually thinking this through and I think that’s a good thing. These are big, tough, complex issues and some of the statements said about my piece have forced me to think through them in more depth and to come to clearer conclusions.
I never intended to use anti-choice rhetoric, but that doesn’t mean it couldn’t be read from my piece. Obviously it could, if someone did.
Since I became aware of feminism I have identified myself as a feminist. It’s been something I have clung to, even when boyfriends rolled their eyes (ex boyfriends that is) or when it made me unpopular. I have read up and learnt what I could, and when I was caught out, I accepted that I was out of my depth and sought to learn more. I have tried to keep up with movements and terminology and I have enjoyed following so many kick ass feminist writers around the world.
When I saw the article from Sally Phillips I knew I had an emotional and ethical dilemma. Was I going to have to choose between feminism and special needs advocacy? Could the two be compatible on this issue? For a while it didn’t feel like it.
Because on the one hand, yes I will always say that a woman’s body is her own and her right to chose what happens to it, is hers alone. Her decisions around her pregnancy are none of my business, and none of Sally Phillips’ business. I can put that belief first and foremost.
But I can at the same time, recognise that there is something going on when an entire country has a 100% termination rate for Down Syndrome pregnancies. And I can admit that it makes me sad. That the thought of a world without Eva’s and other children like her, doesn’t feel like a good thing.
What I didn’t make clear in my first piece of writing, and I want to correct here, is that this isn’t on individual families or women. I never meant to say that each couple who gets a diagnosis of Down Syndrome should “take one for the team” and go through with the pregnancy just because some blogger in NZ decided to get moralistic with them. It would be a cruel and unfair thing to say that, to insist that people feel guilt over their decision as if it all relied on them.
What I was trying to say was that, when considering this choice, wouldn’t it be amazing if the thought of how much financial, social, emotional pressure and stress that is associated with having a child with special needs wasn’t something you had to weigh up, because our communities and society already had those supports in place?
Make whatever decision you want. What I was saying, was when you add in Down Syndrome or any special needs condition to the mix to in utero results, it would be fantastic, mind blowing and maybe unrealistic, to hope that you knew that all else aside, you and your baby would be taken care of throughout the entire of your and their lives if you chose to go through with the pregnancy.
But we don’t know that, because it’s not true. Parents and women know that when they get that diagnosis, in utero or not, there are areas of their lives where they are going to be left blowing in the wind by our government. We’ve already seen in the last few weeks, parents of special needs children rallying together to try to keep some strength in an already disintegrating special needs education system. These things are part of our decision making process, because they are real. I’m not denying that.
I wrote that piece because I hate that these things are real, not because I want to make anyone feel guilty for their own personal choices. Choices that I freely admit that I would have made myself. Me saying that my frame of reference has shifted and I wouldn’t do it a second time doesn’t mean I judge those who would. It just means I miss my daughter like nothing else and would walk over an open fire to get her back.
So today, I want to acknowledge anyone I hurt. I am in an online group of mothers where we talk about how to be respectful to each other, because we all know online communication can be a minefield. One of the things we talk about sometimes is how when someone is hurt, it’s dismissive to just say “I didn’t intend to hurt you,” and expect that that be enough. It makes it seem like their hurt is on no one and no responsibility needs to be taken. In this case, I want to say while I didn’t intend the message that some read into my piece, I am still very sorry for causing that hurt. It’s a lesson for me that when I’m writing about such a heated and emotionally triggering topic I should think through my language choices and process carefully.
I was worried, in writing that piece, that I was laying myself too bare, but I see that that wasn’t the issue, the issue was I was thinking through an issue in writing that is too dangerous to do that with. I was doing what I often do with writing, which is to figure out what I think and feel through the process of writing, but this issue wasn’t the place to do that.
I needed to find that place where I could be both a feminist and a special needs advocate and have those two worlds work together in my mind before I put it on paper.
So if I upset you with my words, I’m sorry. I will continue to write and to talk and to problem solve. Neither of these issues is one that should be silenced. I appreciate all the points of view that were expressed yesterday. It helped me to be a better feminist and a better writer.