I am angered

It is late at night and I am tired. Never a good idea to try to rationalise your anger when you’re tired, but it’s too late for that now. I have just read a statistic in a newspaper article that has made me want to abandon forty years of laid-back liberalism and start swinging an axe. How can I continue to live and let live? 98% of positive Down syndrome amniocentesis tests in the UK end in termination.

Did you get that? I think I need to say it a bit louder.

Out of every 100 babies conceived in the UK with Down Syndrome, 98 are killed.

Termination is a cop-out non-word. You’re dealing with the ending of organic life. I’ll call it what it is. Killing. You wouldn’t terminate a chicken. There’s another word too that is hovering dangerously close to my fingertips.

I’m sorry. I can’t deal with this right now. Jacob’s hearing test in Crumlin this week shows that he’s likely to have impaired hearing and that was annoying me greatly there. Then some pictures of great kids on the Nigerian Downs Assoc website made me smile so that was nice. But all that’s kicked into a cocked hat because in the UK in this age of enlightenment and sensitivity to the planet they kill babies who have Down Syndrome. Beautiful, beautiful people, misunderstood by those who know better before they have a fucking chance to introduce themselves. Here I am, terrified of the political incorrectness of calling Jacob my Down Syndrome son (when he’s actually my son with Down Syndrome if you don’t mind), but who gives a flying crap? What the hell does that matter? In the UK they kill babies with Down Syndrome, and it’s legal and quite apparently the done thing. NEVER DO THE GOD-DAMNED DONE THING!

Aah, I am hanging my head in shame for my fellow humans and crying quietly into this night and I am trying to be gracious and pray for them at the same time because I do not think that they know what they do. I have a beautiful boy whose every cell is graced with forty seven chromosomes, 23 from me and 23 from his mother and one little bugger that slipped in just to spice things up a bit. Could I have considered ending him for that, had I known his status before his arrival? Not while breath moves through me. Could I find forgiveness for someone who would make that choice, someone for whom Down Syndrome would be reason enough? Could I? Forgive me instead Lord, I fear I could not.

It is late, and I’ve already said that it’s a bad idea to try to rationalise emotions when it’s past bed time, but right now I don’t think I could trust myself around that kind of decision-making person. No. It’d be safer to be somewhere else.

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7 comments on “I am angered

  1. McAWilliams says:

    Jaysus that is a scary stat, I too find it incredible that anyone could even contemplate such a thing, maybe it is best that, from what I have gathered on your site, that Ireland does not do these tests beforehand.

  2. Renee Garcia says:

    Happy 6 month birthday to Jacob. He is adorable! My little one has Ds too and is the love of our lives. I look forward to following your story.

  3. Nick McGivney says:

    Apologies for the bad language here and there. Writing in anger makes it easy to do. Next time I’ll try to wait before I hit publish.

  4. Elbog says:

    First, it’s nice to ‘meet’ you. Came here from downsyn.com, I’m “Emdad” there.
    No need to apologize, it’s a measure of the anger that should send us all screaming into the night. Once you’re in the middle of this stream, it’s incomprehensible that the greater society is more than happy to not only ignore you as best they can, and do their best to insure that you remain as insignificant as possible. There’s a lot of different ways of looking at this ‘issue’, but none of them are really any good.
    I look forward to reading some more.

  5. hammie says:

    I agree with you Dad. What has always shocked me about the amnio test is that it is done at 5 months. And Medical science now means that birth is viable (in intensive care of course) from 26 weeks.
    As a multiple special needs mum I often get asked by parents of one child with Special needs; should we try again.
    My answer comes from the experience of parents who adopt kids with special needs; if you have enough love for another child; you have enough love for whoever they are when they arrive. So go for it. If you don’t think you could cope with a double; save all that extra love for the child you have.

    Autism is 98% genetic; some people in universities around the world are getting ready to publish their findings for peer review after years of multi-family research. The question is what they will do with this research?
    Prepare people better? Tell them to adopt?
    Or, when the child arrives in the world; start giving needs based intervention from the earliest stage.

    They could have saved themselves a lot of time and trouble by attending a few parents meetings. When slightly odd people with odd relatives marry other odd people, they have children with ASDs. When those people notice that their kids are not hitting their milestones, give timely and accurate intervention and support.

    You do not need a genetic test to do that. Just the ability to listen and respect.

    I share your shock and rage Dad. And I am glad to live in a country that does not offer termination at 28 weeks.
    Make sex education and contraception (including the morning after pill which prevents conception and implantation) freely available. Offer genuine choices for raising a child independent of a partner’s help, whatever their medical and educational needs. And prioritise the delivery of those medical and educational services in all policy decisions.
    An educated and compassionate society has a role for all it’s citizens, whatever their ability. That is my definition of a brave new world. One with a place for everyone.
    xx

  6. Nick McGivney says:

    I guess the thing about universal truths is that they are given the title because they’re universal. Fear of the unknown is a prime example. I can understand the 98% abortion rate, I truly can, but I cannot condone it.
    Despite what my regrettably preachy tone right now might suggest, I’m not about to put a gun to anyone’s head and tell them how to act, but I sense in that 98% statistic that that is exactly what the UK health system does to people whose unborn babies are ds-positive. It has the whiff of policy about it. Whiff? Don’t make me laugh. It’s a stench. And the terror of the words ‘Down Syndrome’, without the basic knowledge or hands-on experience of what they might actually mean, can of course herd people into one line of reaction very easily. But oh boy is that considerably less than the full picture. I can only assume, from what Hammie tells us, from the experiences of friends with quite unique difficulties, and from a small kernel of what I like to employ as common sense, that this is true for the whole panoply of ‘awkward’ kids like ours. Emdad, you mention somewhere in your own blog a 90% abortion statistic, if I recall correctly. I’m almost afraid to ask if this is true. Is it for California or the US as a whole? I mostly don’t want to know, but the smaller part of me needs to. I have so much to learn, and that little man Jacob has so much to teach, and I don’t want to get too angry about lost people because how can I not let that anger eat away at me?

    My experience lately has taught me a great deal, and revealed to me much about myself that I hadn’t known. If anything, the shortcomings are not in my son’s condition but in my own.

  7. Susan says:

    I can understand your anger, Nick. It has always troubled me too, how a parent can dispose of their unborn child because it will not be “perfect”. I am the mother of 2 special needs children and I love them dearly.As yet, there are no tests to predict their disorder and, if there were, I get upset to think how many babies would be aborted if their parents knew. My kids will go on to lead full lives because of the input that has been given to them over the years. Hard work-yes. But, by God, it has paid off. One of my children is now a hormonal teenager (aaaagggghhhh!) and the other is heading that way but is full of fun and laughter. I wouldn’t change them for the world and, if I had to, I would do it all over again. I am proud of them.

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