X – Xenocide

By Mardra Sikora

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Today we are using a word found in the urban dictionary, a term derived from fiction, however the threat is still real.

I confess, I have scrapped and re-written this blog about 10 times. It’s not easy stuff to write, to share, or to face. Which may surprise you to hear as I have written and written and written about this. No, it never gets easier.  

All I can hear right now is the line from the movie Princess Bride, “No. Is too much. I sum up.” 

Let’s start with the headline of the most recent article on the website, Down Syndrome Prenatal Testing, is“NIPS: 3 babies with Down syndrome born & 2,432 more selective abortions.” I’ll cut to the conclusion: “And researchers say it is cost-effective precisely because it will lead to thousands more selective abortions of children with Down syndrome (and even thousands more abortions of children without Down syndrome).”But that’s not all, only a few weeks ago Princeton Professor Peter Singer, stated in an interview that it is “’reasonable’ for the government or private insurance companies to deny treatment to infants with disabilities.” If you want to know more about the statement and Singer, without losing all hope for humanity, read the NCD reply here, instead.Less than a year ago, another bioethicist publicly claimed it is “immoral” to have a child with Down syndrome.
My reply was one of many. These concepts are not new.  They weren’t even new when Nazi Germany implemented them. This is Why The Movie Menschen is Not Just a Movie. A few years ago, shortly after the Denmark headline boasted it will be ‘Downs Syndrome Free’ by 2030, I took a full 15 pages to explain, with medical and life documentation, my concerns via the “Essay Arguing Eugenics: A Case for Changing the World,” This came in the light of new prenatal testing that scares me not because of its existence, but because of its practice. One takeaway, among all of the study and medical facts, it is this: “No one can prenatally test potential.”Recently these same tests have moved across the ocean to the UK. My heart broke all over again for the parents of people with Down syndrome who were reminded, again, of the “value” put onto their children’s lives.


Dear blogger-mum-advocate Hayley at DownsSideUp has written and spoken many eloquent and compelling arguments for inclusion, and rights, and compassion. She, and her family, reach out well beyond “the community” and talk to the public at large, government, and medical professional. Yet, of all of her words, I am drawn to share today one of the dearest posts she shared years ago, before all of this entered her schedule:“The Doctors’ Waiting Room: The contribution our daughter makes.” Read this and know why I arrived at home in tears for her when the immensity of this battle hit upon her again like a stone that cannot be budged.

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I reminded her. I reminded myself. Sometimes we keep fighting because it’s right, even if we know cannot win. 

For current information follow Mark Leach’s blog and twitter. To support the availability of up to date information about Down syndrome to new parents, check out Lettercase.org and the Down Syndrome Diagnosis Network. 
To write about what this means for our children living today in a society that marginalizes and rates their lives…Is too much.
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