Downs With Ups

In August 2017, 60 Minutes Australia aired ‘Right or Wrong’, a segment covering the push by the Australian medical lobby to make free to all Australian women, the non-invasive pre-natal test[1].

I’ve been reading the many subsequent posts on Facebook and am dismayed, for most people have missed the point completely, which is that women are not necessarily being given accurate and contemporary information about Down syndrome at the time of their pregnancy.  Therefore, women are unable to make an informed decision as to whether to kill off their foetus, following a diagnosis of Down syndrome.

The reported nine out of 10 termination rate suggests this is not the case for if at the pre-natal screening stage, women were to meet people of all ages with Down syndrome, they would realise that Down syndrome does not need to equate to a death sentence.

Additionally, these comments focus solely on the syndrome and overlook the fact that the object of disdain is a living baby.  People are putting the syndrome before the person.  This is evident in the language used, such as “Down’s baby” or “Down syndrome child”.  It’s clear we have a long way before difference is embraced in our society.

Poppet is my daughter, first and foremost.  I don’t look at her and think ‘Down syndrome’.  She doesn’t think about Down syndrome either.  We think about ‘normal’ things like dinner plans, school homework and holidays.  Nor do we focus on the few obstacles she faces.  We work on what she can do.  We don’t want sympathy or for people to feel bad for us and we aren’t objects of curiosity, although we often are.  We just get on with our lives, just like every other family.  Down syndrome does not define us or who we are.

It seems other people who walk in similar shoes share the same philosophy.  One outstanding person who echoed our views was Sam Berns, a guest speaker for a TEDx talk entitled, ‘My Philosophy for a Happy Life’[2].

The YouTube clip has been viewed over 26,000,000 times as Sam discusses his approach to a happy life, despite facing the challenges brought about by his genetic condition.

Sam’s views were simple yet mature beyond his 17 years of age and they provide a strong message to prospective parents of a child with a disability.  His key messages include:

1. I have a very happy life, despite many obstacles.
2. Be okay with what you ultimately can’t do, because there is so much you can
3. Put things in the ‘can do’ category by making adjustments.
4. Surround yourself with people you want to be around.
5. Keep moving forward.
6. Always have something to look forward to.

Actually, these views are a strong message to any prospective parent, which just highlights how irrelevant disability is in the greater scheme of things.

There is an urgent need to bring the medical lobby up to date regarding disability, including Down syndrome.  I wonder how many doctors who are counselling pregnant women, have actually lived with a person with Down syndrome?

Equally, there is an urgent need to raise awareness about what it’s like to live with a disability so that women are no longer afraid of making a choice that’s based on fearmongering and outdated views.

To all prospective mums: ask your doctor if they have ever lived with a person with Down syndrome and if they haven’t, please contact me so that I can introduce you to Poppet.  Then you’ll be able to make a more informed decision.

PS You can view Sam’s talk here https://www.youtube.com/watch?v=36m1o-tM05g

[1] This blood test is used to diagnose Down syndrome and is purportedly 99% accurate.

[2] Sadly, Sam passed away just a few weeks after his talk was published.