Down Syndrome and the test

Down Syndrome and the test

This is a letter that I wanted to share with you. It was recently sent to my local MP and its really just some thoughts that I put to paper about the testing for Down Syndrome and what it means for our society.

 

Dear Geoffrey Cox,

Today I feel sad. As I go through my normal day there is something in the back of my mind that makes me feel heavy.

Today the media is filled with headlines on the new testing for Down syndrome.

When I think of the new testing I feel a lot of things. I feel apprehensive, worried and sad. Strong words like Eugenics and Eradication float through my head.

I should be against this test. I want to be against this test. As a Christian who is against termination this test screams trouble. But there is one big reason why I can’t be against this test and that’s because…I had it. Or rather I had what would now be the old fashioned version of this test in the form of a CVS.

The test I had at 12 weeks which told me my daughter would have Down Syndrome gave me something. Something much more important than choice or statistics or a diagnosis. It gave me my daughter’s birth day.

Ask parents about the day their child was born with Down syndrome and it won’t be long before your told stories of tears. Of midwives exchanging glances, of that sinking feeling and the moment it all became REAL. Ask me and I will tell you about the happiest day, a day of nothing but celebration and the moment we finally got to meet our beautiful daughter for the first time. Of picture taking and happy doctors who congratulated us on our new arrival without the need to follow it with a ‘but’. With all shocks, worries and uncertainness dealt with months earlier the screening tests allowed us to prepare for and celebrate our new arrival.

So why does this test bother me? Maybe because of the way it’s approached. ‘Screening’ is something the hospital does to detect bad, abnormal, different. We screen for cancer and diabetes. In our subconscious minds we view screening as looking for things that are wrong and to be avoided therefore if we need to screen for Down syndrome it must therefore be because it is something to be avoided at all costs.

And with Denmark declaring a hope to have a perfect Down syndrome free society by 2030, completely disregarding the parents who will have the test and still want to bring their babies to life, do people with Down syndrome read these headlines and wonder “why do you fear me?”

As the new test is rolled out I wonder how our perceptions towards this group of our society will change. Towards both the people with Down syndrome themselves and the parents who choose to have their babies believing them to be beautiful, wonderfully created human beings just as they are.

As screening becomes more efficient and as terminations become standard and normalised how do we feel about our medical and political professional’s aligning themselves more and more with the soft eugenics now associated with western countries and made most famous by the Nazi party. How do we feel about living without diversity to challenge us, move us, and motivate us? To live in a society that puts pressure on mothers to only bring perfect babies in to the world, denying them the right to love their unborn babies unconditionally and forgetting that a perfectly born baby never guarantees a functioning adult who contributes to society will appear 20 years later.        

What would you say if I said I looked forward to a day when we could screen out homosexuality and remove these people before birth? Sounds shocking doesn’t it. It wouldn’t of 50 years ago. Or as cancer rips through young children’s bodies could we detect who’s most genetically susceptible and remove them to save future so called pain and suffering? And will there come a time when we are no longer satisfied with targeting just the unborn and move on to the terminally ill and elderly. How is it we are losing our compassion to care for those dependant on us, seeing this precious and honourable responsibility as an unfair burden and at the same time conveniently overlooking the all too real fact that we are all only one illness or accident away from becoming dependent.       

And so as the disability community gasp to keep their heads above water and other communities such as transgender become more and more fashionable ask yourselves what type of a society you want to live it? What type of society do you want to represent. Look around and ask which minorities are allowed in? And which will eventually be screened out? 

From a society that looks at me and says in one loud voice why? Just remember that 92% of parents may choose to abort but that means 8% choose LIFE. We took the test for many reasons but my husband and I decided long before the results that we would choose life for our baby. Don’t let the new testing criminalise couples like us for embracing much wanted and much loved children. For knowing and respecting God’s perfect plan for our lives.

 

Jeremiah 29:11 (NIV)

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.               

 Psalm 139 : 13-16

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well

 

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