We need more than cute to create change ...

Jackie Softly is the mother of a young man with Down syndrome, and has worked professionally for many years in family support, advocacy and education, travelling the length and breadth of Western Australia visiting metropolitan, rural and remote communities in the process. Her knowledge of the Down syndrome community in Western Australia is well recognised and respected, as is her commitment to rights and equity. She stepped in as acting CEO for Down Syndrome Australia for several months last year, and actively participates in a number of forums at local and national levels.  She is a diva ... a Bolshy Diva.

When Jackie expresses a view on social or any other medium, it's worth listening to. She has given us permission to reprint her personal Facebook post from yesterday:

I’ve been thinking, quite a lot, for some time, about Down Syndrome Awareness. If you haven’t noticed, it’s Down Syndrome Awareness month in many places, and the internet is brimming with
images of cute kids in chromosome themed t-shirts, teens and young adults in the US wearing homecoming king and queen regalia and of course, gorgeous young women on the fashion catwalk.

And I can’t help thinking, if it’s Down Syndrome Awareness week/month, what are the actual messages we are sending to the community? Are they actually getting out to the community, or are they mainly doing the rounds in our community? Are they actually making a difference to the lives of people with Down syndrome? It’s not that any of the above examples are bad, but if we ourselves aren’t clear on why we are posting and sharing them, there’s a very huge likelihood that other people won’t get the real message – many of the comments to these kinds of posts show that very clearly.

Don’t get me wrong, I love seeing photos of people, of all ages, with Down syndrome. I especially love photos of people with Down syndrome doing what they love, achieving their dreams and being proud of who they are. But, I despair when I see these photos accompanied by “inspirational” comments that don’t respect the person as a human being, but as a kind of life lesson, an inspiration for others. And please don’t get me started on the memes that suggest people with Down syndrome are actually angels and all that this notion implies…

I also wonder if we can post memes or photos that highlight a person’s genetic difference, including the array of chromosome t-shirts, while arguing for equal rights? I think maybe we can – it’s absolutely spot on to say “I’m different but I should be treated equally”. But are we actually making our message clear when we proclaim that our kids are “Rockin’ their extra chromosome”? I’m not convinced at all that we are. My take, looking at other people’s comments is that they see the cute, and cute can only get you so far. And, it kind of runs out when you grow up…

Down Syndrome Awareness has been around a long time. I remember our earliest local effort, close to 30 years ago, handing out leaflets with other parents at our information stand in the city, resplendent with cute photos of our little kids. Through the years all kinds of events, media and now online awareness strategies have been tried.

And I now wonder even more, how, or even whether, any of them have been particularly effective. Because, 30 years later, people with Down syndrome are still treated less favourably than others in almost every setting including education, employment, health care, support to live independently.

Many of the ancient beliefs about people with Down syndrome are still with us; the seemingly benign idea of the “always happy eternal child” lies behind so many of the barriers to real inclusion in our community. The notion that Down syndrome is a tragedy pervades attitudes throughout society, leading without a breath to the belief that life with Down syndrome is not worth living. How do we counter that with “awareness”?

So where do we go with the whole idea of Down Syndrome Awareness? For me, there are some clear answers emerging. We need to look at where we are now – what is life like for people with Down syndrome? What is missing, what is wrong, what are the battles still being fought for equity and inclusion?

We, parents and Down syndrome organisations, need to listen to people with Down syndrome, and help their voices to be heard – ensure they are heard. We need to work together with people with Down syndrome to run campaigns that focus on what is wrong, what is missing, to claim their rights as equal citizens. We need to learn from and work with other people with disability. Our purpose and our messages need to be clear. We need to know our goals and our targets. Sadly, cute pictures won’t get us where we need to be and changing from “awareness” to “acceptance” won’t do it either.

This year, I may not post something every day for Awareness Month, but when I do, I’m going to focus on rights. It’s a start in thinking of the work that still needs to be done.

So, is there a place for those chromosome t-shirts? Hell yes, let’s all wear them to Disability Pride events. Let’s help our kids to be proud of who they are and to raise their voices for equality. See you there!