Downs With Ups

It’s taken me a week to assemble my thoughts after watching a segment on 60 Minutes.  The topic of the program?  The push by the Australian medical establishment to make free a blood test[1] to all pregnant women that would determine if their foetus had Down syndrome.

In the segment, Dr. Philippa Ramsay states, with no attempt to hide her delight, that the test is 99% accurate.  Hooray!!!  We’ll be able to eradicate people with Down syndrome.  She goes on to say how helpful it would be to be able to ‘triage’ the foetus to determine whether the child would become high functioning or low functioning.

Shit, why couldn’t we come up with a test like that for potential murderers, megalomaniacs or even just people with a low IQ?  Wouldn’t it be great if we could determine, in utero, how clever a child would be?  Then the mother could decide whether to keep the baby or not.  Hang on, let’s go further and just eliminate any other potential disability.  Hair lip?  Bang.  Fragile X syndrome?  Yep.  You’re gone.  Missing a limb, digit or some other body part?  You’re out of luck.

As this test is touted as being 99% accurate, it’s stated in the 60 Minutes report that nine out of 10 women are choosing to terminate their pregnancy.  Actually, let’s use the correct term, ‘kill’ their foetus.

People in the medical field wield an enormous power over women, who are without exception, anxious at worst or mildly concerned at best, about the health and normality of their baby.

I’m not going to judge anyone, except I am highly critical of anyone in the medical field who does not have and offer a balanced viewpoint regarding Down syndrome, (or any other disability for that matter).

The push to have this test available to all women assumes that a woman wouldn’t want a baby with Down syndrome and the numbers of abortions clearly indicate that women are not receiving balanced information about the condition.  According to Dr. Ramsay, women are desperate to get access to the test.

Who was the person who sat down and thought, “Let’s sell the idea to pregnant women that having a less than perfect baby warrants killing their unborn child.  Let’s make it as easy as possible to scare the poo out of these women.”

What sort of person thinks like this?  And as a side issue, I wonder how much money was spent developing such a test.

The entire segment illustrated perfectly, the crux of the issue.  In virtually all references to people with the condition, the syndrome was put before the person.  The Down syndrome baby.  The Down syndrome person.  We see the condition first, then as an afterthought, the person.

There are other out-dated terms used still in 2017, like ‘Downies’ or ‘Downs people’.  It’s like saying wheelchair person or bipolar person or depressed person, or even blue-eyed person.

First and foremost, people with Down syndrome are people.  They are living human beings who are capable and have feelings.  (And no, they’re not always just happy.  They experience the full range of emotions.)  People with Down syndrome have hopes, aspirations and dreams, scarily, just like us ‘normal’ people.

Do you wake up every morning and think, “Wow, I have freckles?”  No?  Well Poppet doesn’t wake up every morning and think, “Boy, I have Down syndrome.”  She wakes up, just like all of us, looks forward to the day, thinks about getting dressed, having breakfast and doing her teeth before going to school.

The only time she thinks about Down syndrome is when someone stares at her or makes a comment; only then she is reminded that that person isn’t seeing her as a person; they are seeing her as a condition, just like Dr. Ramsay.

(Incidentally, according to Dr. Ramsay’s biography, she believes in giving empathetic care to females of all ages; Poppet would be an exception to this because she has Down syndrome, a condition that Dr. Ramsay appears to be keen to exterminate.)

When I was pregnant, I had an ultrasound and without consultation had a nuchal fold test[2].  Based on that test, I was advised I had a one in 1800 chance of having a baby with Down syndrome.  I could have had an amniocentesis test[3], which would have given me a more accurate result, but I would have had a one in 100 chance of miscarrying.  I chose not to have the test.

When Poppet was born, I was shattered when I learned of her diagnosis of Down syndrome.  I knew nothing about the condition, except that it meant ‘disability’.  There was very little anyone could tell me about how my daughter would grow up.

For the first years of her life, all I could see was Down syndrome.  Slowly though as the years went by, I started to see more of Poppet and less of the syndrome.  Now I only see Poppet.

We have spoken about Down syndrome but really, it doesn’t have much relevance to our lives.  I don’t speak of disability either with Poppet.  The word, ‘disability’ doesn’t have a place in our home.  I don’t dwell on what she can’t do or what she is slow to do.  I focus on what she can do.

Poppet has ability.  I see it’s my job to nurture this.  It’s my job to show her the full spectrum of life so she can choose her gift to the world.

Pregnant women desperately need a more balanced perspective and this needs to be given to them as part of any pre-natal screening they choose to undertake.

Currently, the only access to direct information is through the myriad of medical teams that surround expectant mothers.  It’s medical people like Dr. Ramsay who need to learn more about the condition called ‘Down syndrome’ from first-hand experience.

Medical people who have a significant influence over women’s choices need to come and watch Poppet prepare a meal, play piano, play a game of cards, empty and pack the dishwasher, perform ab crunches at the gym or walk up to someone, hold out her hand and introduce herself, with confidence, interest and sincerity.

P.S.  I’d like to thank 60 Minutes Australia for airing a reasonably objective and thorough exploration of the issues.

[1] The test is called the ‘non-invasive pre-natal test’ (NIPT).

[2] Nuchal translucency screening uses an ultrasound to measure the thickness at the back of the developing baby’s neck.  A thickening in this area can be an early sign of Down syndrome.

[3] This is a pre-natal test that involves removing a small amount of fluid from the sac surrounding the foetus.