A World Without Downs – a different POV

A documentary last night by the actress Sally Phillips explored some attitudes towards Downs Syndrome. It was called a World Without Downs. I read some preview interviews with her and decided I couldn’t watch it. But my Twitter feed was filled with watchers. I’m glad they found positive messages in it. And I tried not to protest at the comments.

But.

I’ve blogged about my miscarriage before.

Here, for instance.

What’s lesser known is that the reason I miscarried is because we had the test for Down’s Syndrome. The invasive test. With the big needle.

The pregnancy was not planned. For the 17 weeks it lasted, many of my thoughts were of sheer panic, about what might happen if the baby died, about how I was not sure how to manage as a parent. I knew nothing about parenthood. Both me and S were in low paid jobs with few prospects and our families lived far away. It was just us and our meagre income. And no clue about children.

We were told there was a higher risk of Down’s and that we could have the test. We were told the test came with risks. This information was presented in a factual way. We were not indoctrinated by health professionals towards any kind of decision. We were treated as adults by people telling us all we had to know. We took the test. Here’s why:

Because I wanted to know, either way, if the baby was alright. For me, a baby with extra needs was even more terrifying than the prospect of a baby. Because I had enough to deal with.

Because you play the odds.

The invasive test is terrifying. You see the baby in the scan, she’s doing somersaults and you have a moment where you think you should just trust her to be ok. But you don’t say anything and then you see the needle heading straight towards her. You turn away because you get queasy with needles and you hear “has the baby grasped the needle?” You turn back. She’s fine. You throw up. Everywhere.

There is now an non-invasive test. How different would life be if we’d had that.

If the test had been positive, my mother had already decided she would up sticks to help us. So we needed time. But when it comes down to it, I’m pretty certain I would have aborted. I don’t know what I would do if in that situation now. But back then, younger, less experienced, less well off and scared out of my mind, I was certain.

I know several parents, friends of mine, with disabled children. One has a daughter with Downs. My admiration and awe for all of them is beyond bounds. I’m just not sure if I could’ve done it, or what my life would have been like. And what the baby’s life would’ve been like.

Our society today is less tolerant of disability and health issues than it was 12 years ago. But even then, a full and fulfilling life with a child with Downs is easier with money, support, tolerance and time. You don’t have an Olympic gymnast with Downs without giving up your entire life for them. Very few people can do that. I also know that people with Downs don’t all have the same symptoms, health issues or attitudes. There are wild variances. You hear a lot about amazing families with wonderful lives treasuring their disabled children. But not everyone is like that. There can be terrible complications, there can be stress, depression, violence, despair.

I think we should talk about our attitudes towards people with Downs Syndrome or with any disability. We need to discuss how we support parents. We need to discuss how many times a mother needs to jump out of a plane to fundraise for her child’s wheelchair.

But from the comments I heard last night, two things became clear to me. We shouldn’t be blaming health professionals for talking about the possibilities. The possibilities can be awful, or not, and you can’t know this in advance. This is not eugenics. This isn’t Gattaca. Any child can have severe health difficulties, Downs or not. The screening process should be seen as something that can be used to prepare parents if they want to go ahead with the birth, and many will. Especially if we can have a sensible discussion about the issues. And if we can as a society provide more support to parents with disabled children.

But some parents won’t want to go ahead. And so the other thing that was clear was that we cannot, should never, start blaming parents for the decision they make about their own children. We shouldn’t be sitting in their kitchens asking them to justify why they had an abortion. Every person is different. I stand by my decision to take the test, to find out that my girl was ok. It cost her life. Don’t think I don’t still grieve for her. But I also stand by what I would have done if she had been Downs.

We need a proper debate. I’m not strong enough to lead it. I admire Sally Phillips for trying to start one. Let’s hope others join in.

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