Hayley from Downs Side Up shared this article on Facebook;
It’s a piece by David M Perry and it’s about raising awareness of Down’s Syndrome through cute pictures and how that does little to dispel the “they’re such happy people” myth and also fails to help raise awareness of some of the real challenges people with DS face.
Ok, so I couldn’t stop thinking about this article because I am 100% a spreader of this “cuteness porn”, but I have no desire to spread a message of sunshine, lollipops and rainbows… In fact my mother actually bought a t-shirt for Audrey when she was first born that said “Smile and be happy” on it and I absolutely lost the plot (hormones!) and made her take it back. I couldn’t think of anything worse for any child to wear (mega cheesy), but even more against it for Audrey – she’s not a poster girl for a constant cheerful disposition!
The thing is, what I think new-mums are looking for, and what I know I was/am looking for, is “inspiration porn”. All I wanted to see (and mostly still do) is that children with DS functioned happily in ‘normal’ families. Actually, no, better than that; I want to see glamorous families! Trendy families! Rock n roll!
I appreciate that it is important to spread a message to the world that people with DS are complex and emotional, that they have sad days, bad times, struggles… but that’s not necessarily the best starting point for awareness.
The leaflet I was passed when Audrey was born had that piece about Holland in it (which was actually lovely) and a lot of overwhelming health issue stuff that I just didn’t want to think about. I still don’t.
Awareness needs to be spread to;
New mums and dads
Prospective mums and dads
Parents of children your kid will go to school with
That person you pass on the street
Ok, basically everyone.
They need to know that someone with DS is loved by a family of ‘typical’ people and that they aren’t scary or ugly… That they aren’t an alien race of beings… They are human and they fit into families of all shapes and sizes and do ‘normal’ things. They need to feel comfortable around someone with DS and this should lead to better job opportunities, inclusion and understanding.
Personally I don’t think the cuteness factor takes away from the bigger issues… It can be used as a tool to lure people in to find out more, surely? Every mum I follow on Instagram will have lured me in with a cute baby video or picture, but that’s just one part of their story and soon I’m following them through operations, sleep studies, second babies, sleepless nights, developmental milestones… We all share in the frustrations and the achievements, the ups and the downs. I know I’m seeking this stuff out, but anyone could be struck by a cute image or video and end up finding out more.
Macy Makes My Day (check them out on Instagram), is about a little girl with DS and her family… I found this account after a friend told me about this amazing inspirational family and what a cool account it was (the friend had no connection to the DS community, but was following Macy’s story). After following Macy, I found the DS hashtags that led me to countless blogs and IG accounts, all of which have taught me a lot about Down’s Syndrome, the good stuff and the bad.
Phew. I feel a bit better now I’ve got that off my chest.
Please excuse me whilst I spread some more cuteness for #DSAM2014