“What a bunch of selfish stupid people. What kind of life are those kids going to have? No chance of independance, no chance of holding jobs, no chance of normal life. Stuck on disability pension for the rest of their lives …. And I am REFUSING my taxes being spent to pay for the stupidity of their mothers …,” said the delightful Patrick Novak in response to the TV Show, “60 Minutes Australia” who covered a report on NIPT, the controversial test that, in their words, could eliminate Down syndrome.
I’ve stayed quiet on the subject mainly because the response the report got from some of their viewers, left me feeling utterly deflated and that this battle (the battle to get people to see that Down Syndrome is such a small part of Oscar and how we see him) is too hard a one to fight this time. But deciding that staying silent is not really my style and because I have this platform to say my piece, I decided better of it. So here goes…
Before I go on though, another of the comments I read-
“Wait till you still have to give your kid continence care when he’s 50 yrs old and your 85 year old hands find it too hard. Thats what happens to downs syndrome grown ups” was a quote from the equally articulate Lisa De Lace
“For those who want to keep the downs syndrome gene, its like keeping the rectal cancer gene alive” was another gem from her later on in the thread
And a particular favourite of mine, Sarah Marie Miles commented — “What a selfish decision to allow a child, whose quality of life will be no better than a dog, to live”
So here’s the thing.
My first thought was that these people (and believe me there were a lot more) don’t seem to possess a single brain cell between them all. “IndepenDANCE” Patrick? Really??! But that would be me being an arsehole and stooping to their derogatory level right?… So I try to rise above it.
Secondly, referencing the “I’m REFUSING my taxes being spent to pay for the stupidity of their mothers” (one of the most common arguments people seem to raise regarding the fact that someone with DS would cost the country a shed load of money over the years – Disability Living Allowance, Benefits, NHS bills etc etc. I find myself (and again I’m well aware I sound like a total arsehole here), hoping that at some point in their lives, they or perhaps someone close to them, will find themselves needing the NHS or benefits. The arsehole in me, finds myself hoping they’ll have a car crash, end up disabled and need the NHS really badly. Or get so addicted to crack cocaine that they won’t be able to work and will find themselves on benefits. And when I’m feeling like the worst arsehole of all, I find myself wishing, that they one day they might find themselves in a position where they’ll need it all, for the rest of their lives – DLA, the NHS, benefits, the lot… because – How do any of us know if any of us will be struck down with Dementia, Alzheimer’s, the big C tomorrow and need all that money we’ve paid in taxes over the years, and a whole load more? None of us know. And they better hope that karma doesn’t come and bite them on the butt hey.
Oh and by the way, i’m not likening DS to an illness. Just that people with DS are eligible for all of the above because of some of the challenges they face and because it helps them. Helping those who might need more than others is a good thing surely?
My main gripe here though is people are forming opinions without really knowing the facts. Without having met anyone like my Oscar and making a judgement on what they think his life is like or will be in the future…
Yes, having a child with DS comes with its challenges but because of early interventions and the fact that our kids are being born into families where they’re loved and valued (instead of being institutionalised like they once would have been), they’re thriving.
Yes, some children/adults with DS do better than others but in the same way, isn’t that true of those of us considered “typically developing”? Before I had kids I made a living prancing around a stage because, lets face it, some of us were never destined to be brain surgeons. We all have different IQ’s, different levels of intelligence right? We’re all different.
Has it really come to this though? Are the comments that these people left after watching the show, what they really think? Are there really such cold, heartless, narrow minded people in the world, who think it’s ok to say such things? I mean even if they think it? I guess the answer is yes.
Can anything be done to ever change their minds? Probably not.
For the record Australia, and all those other countries, including us here, so hell bent on eliminating Down Syndrome… I really don’t think we ever will. For there will always be those people who choose not to screen. They’ll also be other people like me, who won’t be offered the NIPT (Harmony Test) because in my pregnancy, I was considered Low “Risk” and wouldn’t have been deemed eligable. They wouldn’t have offered it to me because the screening they do, to work out who should have the test and who shouldn’t, isn’t worth the paper it’s written on. They get it wrong. Oh and even if you do have the NIPT and “get the all clear”… they sometimes get that wrong too. So yes, there may be fewer, but they’ll always be people with DS in the world
I would so love for these people commenting, to spend a day with us. To see Oscar for who he is and not just his diagnosis. For them to understand what a huge impact he has on so many people who have the privilege to be around him. A little boy whose life I value for everything he is and everything he has brought to us as a family. He’s not a burden. Far far from it. And if we are ruling someone out on the basis, that as his Mother, i’ll die before him and he’ll be left costing our government too much money, then I think it’s become an even sadder world than I already thought.
I may have said too much here and I may (definitely) have come across as an arsehole (I don’t really wish ill of anyone) but I can’t tell you how much hearing people talk this way about your child, hurts.