Wow. Just wow. The last few weeks has really seen news story after news story that has just caused my stomach to churn. I've learnt in the last year or so to not just say what I'm thinking or to make rash judgements about an issue, without mulling it over. After the first news story my mind was racing with commentary and I was ready to put virtual pen to paper. So was every other blogging mother of a child with Down syndrome it seems! Then and even more offensive article was spreading across social media and I was making notes ready to respond with a fiery tongue. No one really responded to that one. Tonight, yet ANOTHER disturbing news story has invaded my life and honestly, I can't sit and mull any longer.
The first story is that of baby Gammy. In short, an Australian couple went to Thailand to engage a surrogate. They were blessed with twins; however, one twin had Down syndrome. It's hard to know what the truth really is, and it's almost always shades of grey, the typical twin came home to Australia, while the other twin stayed with the surrogate mother in Thailand. There have been many 'revelations' about the story since it first broke and while the abandonment is heartbreaking, that isn't what really upset me.
It was the multitude of statements flooding social media claiming the preciousness of life, that the author of the comments would gladly have Gammy as their own, that every life was valuable. It wasn't just a handful of comments. It was a deluge. Blog comments, Facebook comments, news website comments. Here's the rub, 92% of in utero detections end in termination. I don't believe it's only the 8% that were commenting. Give or take a few percent of families like us who didn't go down the detection path at all, I still can't believe that the 8% are really that vocal. I think a large number people are hypocrites. Well meaning hypocrites. If the abandonment of Gammy was really so important to them, if they REALLY felt that all children with a disability had a right to a quality of life equal to that of their typical counterparts then why aren't they out in their communities, helping out families with a child or adult with a disability? Why don't they practice what they preach? Babysitting, cooking meals, offering respite, volunteering, lobbying? It's easy to feign outrage on social media.
The second story was a delightful vignette from the one and only Richard Dawkins. In short, he said it was immoral to NOT terminate foetuses with Down syndrome as their lives would be filled with suffering, however, children with ASD should be allowed to live as they can be productive members of society. Even his apology was vile. Sweeping generalisations aside, his premise lies in the survival of the fittest theory, which is fundamentally flawed in this case as Down syndrome is a RANDOM CHANCE conception. If he really has a problem he should be calling it immoral to have babies once you turn 35, but I guess that would alienate too large a demographic.
On the flip side creationists would have you believe that all disease and genetic chance is a result of the fall of man from the Garden of Eden. Personally, I'm not from the camp that believes God only gives children with special needs to special parents, or that God only gives you what you can handle (that's another blog entirely). I've seen and experienced the antithesis of both those premises. I don't believe, as Dawkins does, that my child is a terrible burden or shitty luck. I don't believe that my daughter is the embodiment of original sin.
I DO believe that she is Imogen.
The third news story aired tonight regarding pay rates for people with disabilities. A class action suit has been brought to put and end the the LEGALLY SANCTIONED practice of paying less than minimum wage to employees with a disability. Legal discrimination that allows for a person to be paid $80 a week. For those who aren't affected by disability I'm sure you're not too worried, but it underlies the underlying discrimination that is experienced by people with disabilities. This explanation is about sexism but is a good illustration of the issue. Sometimes I worry that this life has turned me into a big ol' whinger, but then I'm reminded that while some discrimination and marginalisation is subtle and easily misconstrued, other discrimination is outright and needs to be opposed.
The only thing that I can ask you to take from this is to be mindful of the broader context in which families and people with a disability live in. You never know what little thing has been said to, or read by a person, or how heavy their heart might be at a given point. The media, and often people in general, remind us constantly that we are different, that life is sometimes quite needlessly cruel.
Personally, I am grateful, eternally grateful for the incredible support and understanding that we receive from our support network. Family and friends, without knowing it, have reminded me each time one of these news stories hit that we are not alone, that we have strength in numbers. This little town is an incredible place to call home and our little family is strong.
Please join our family at our Facebook page! We're growing bigger every day.