Tuesday, November 15, 2016

"A World Without Down's Syndrome"- My Take

Have you ever watched or read something that resonated with you strongly?

That happened to me recently. Twitter was all abuzz about a BBC documentary "A World Without Down's Syndrome." The hashtags #justaboutcoping, #worldwithoutdowns, and #worldwithdowns grabbed my attention. I decided I had to check this documentary out for myself.

Sally Phillips, an actress, screenwriter, and mother to a child with Down syndrome, tries to explain the complexities that arise when countries mandate prenatal tests, which have become more accurate in definitively diagnosing Down syndrome.

I'll be honest, I thought the title was a little attention grabbing when I heard it. There is no possible way that this world would ever be rid of the genetic condition of Down syndrome. Even though, I am aware that abortion rates are extremely high when babies are prenatally diagnosed, I have always felt there would be a pocket of people who could accept a baby with Down syndrome.

After watching this documentary, I felt much less optimistic. In the UK, 90% of mothers decide to terminate pregnancies in which Down syndrome is diagnosed in screenings. In the UK, late term abortions are permitted due to Down syndrome being considered a severe disability. In Iceland, the documentary reports the number of terminations became 100% after screenings were mandated. How is 100% even possible?

When the credits rolled at the end, I wept like a baby. I cried for the ignorance of people. I cried for the injustice of the unborn whose lives are never lived just because a test shows they are going to be different. I shed tears over the fact that people do not want to have a child like mine. I sobbed for the women who are put in this situation to decide. And, I prayed for the people of this world and their skewed definition of humanity.

Surely this documentary was biased right?

I don't want to believe we live in a world that views people with disabilities as "burdens" and questions their right to life. But, then I read other things online too. Take Richard Dawkins, a scientist, who said on Twitter it would be immoral to carry on with a pregnancy with Down syndrome. He offered no apology for his statement claiming that he was approaching this subject in a logical way, and that the woman ultimately has the right to choose and try again.

I had a dozen questions in my mind after watching this documentary such as:
-What constitutes a good life?
-Or better yet...what is the purpose of life? Success? Achievements? Independence?
-Is the termination of a pregnancy confirmed with Down syndrome seen as a mercy for the unborn baby or an escape for the parent who was expecting a child with no disability?
-If Down syndrome is a reason for termination, where is that line for other disabilities or conditions? In other words, what are "acceptable" conditions that termination would seem inappropriate for?
-Should every pregnant woman expect/deserve a healthy baby? Is it a right of the woman to receive a healthy baby?
-Should a fetus only be guaranteed its life when it's genetically perfect?
-Why is disability/Down syndrome perceived so, so negatively?
-Is our world simply chasing after perfection, which will truly never really exist?

These are questions with no good answers.

You see I don't believe God intended for us to make these decisions that science now allows us to make. I fear for those with disabilities who, in my opinion, face the greatest discrimination with smallest amount of advocates.

My daughter has taught me that a world with Down syndrome is not so scary. When we were first told Jaycee had Down syndrome, I knew of 1 person in our community with Down syndrome. One! Since then, I have met other people with Down syndrome in our local community, but we felt isolated for so long.

Because of that feeling of isolation, we made a choice early on to try to integrate Jaycee into the community. She attends church with us. She attends public school. We try to take her to community festivals or parades when possible. I have written a few articles for our local newspaper regarding Down syndrome and have arranged public fundraisers for our Down syndrome Association. All of these are our family's attempts at normalizing Down syndrome in our community.

We have always felt we may never be able to reach the world about acceptance of those with Down syndrome, but we may be able to impact the people around us. Hopefully these people know that we support a world with Down syndrome.

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