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Down Syndrome NSW
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Friday, 3 April 2015

Weekend reading and viewing: long weekend edition 4th - 5th April 2015

In the wake of World Down Syndrome Day, and with a four day weekend (in Australia, at least) you might have time for some more reflective, and possibly more demanding, reading and viewing ...

On March 21st We Celebrate The Good Life
Mardra Sikora, Huffington Post, 16th March 2015
On March 21st we will celebrate World Down Syndrome Day. We celebrate because Down syndrome is one part of who Marcus is. Like many families who find themselves in an unexpected place -- it is not about making the best of it; it's about celebrating the best of it.

What I'd like to share this World Down Syndrome Day, with those of you who don't live in the place we do: It's not what you think ...

The Conundrum of Achievement and Disability
David Perry, How Did We Get Into This Mess, 27th March 2015
One response to ableism, eugenic ideology, or just plain ignorance is to tout the achievements of people with disabilities. Sometimes it can veer into inspiration porn or cuteness porn, but I've long thought that there's a bigger problem. 

If we define the worth of an individual by what they do, and then say - look, people with disabilities can do many things - what about those people who do less? Have we devalued them? By adopting the epistemology of "do" = "worthy," we implicitly reinforce disability hierarchies.

My son Nico is a wonderful, talented, smart boy. He has profound verbal delays in expressive speech, and in our society, expressive verbal ability tends to place limits on inclusion. If we presume achievement in neurotypical norms is the pathway to asserting value, Nico loses in that contest. Instead, we have to reject that epistemology and assert value based on broadening our perception of shared humanity ...

I want ball - a WDSD reflection
Garden of My Heart,  30th March 2015
I watched my Facebook feed fill up with cherubic smiles and triumphant stories describing the “more alike than different” aspect of Down syndrome. A few people passed around several blog posts touching on the idea that WDSD should reflect the full spectrum of Down syndrome, and not just those who attend college, drive cars, get married.
I watched all this unfold, watched the Day in the Life project grow, and felt silent. Stifled. I spent the day wondering where I fit into the parenting community, and where Rowenna fits in the circle of her peers with Down syndrome.
I felt much the same way I’ve felt since Rowenna started to veer off the “more alike than different” path, but a new feeling crystallized: I felt sad. A community that works so hard to make sure our children are included felt like a place we didn’t belong at all ...

Believe and live
21+21+21=? 29th July 2013
I love this article by Anita Cameron about different kinds of disability advocacy tools. She argues that nothing will ever get done without direct action. "Right on, right on," I say. I believe that too. Nice is not enough. But still, taking direct action implies we all know, and agree on, just exactly what we are fighting for. Right?

So what is it? What am I doing here and elsewhere? For me it all comes down to acceptance, meaningful inclusion, and equality.

None are currently a complete reality, but they all are the logical next step for humanity which evolves and progresses (and thus isn't on a crash course with some sort of an apocalypse). But most people don't seem to know that.We need vision.

So much about all of this is vision. So much about this is expecting more than we think will happen, faster than we think anything will happen. It is expecting a large scale societal change and behaving as if this large scale change is imminent. Practically already here. Happening as I shout ...

Is Anybody Listening to Disability Advocates?
Emily Ladau, The Disability Dialogue, 27th March 2015
... are the people who truly need to be reading our words the ones actually reading them?
... what about the millions of non-disabled people around the world who don't know about the daily lives of disabled people from the inside? The ones whose views of disability are colored by a range of misunderstandings and misconceptions? The ones who harbor deep-set prejudices against disability? These are the people we must connect with in our advocacy efforts in order to spark true change. Are we reaching them, or are we just talking to ourselves? ...

Setting The Scene For Self Management
Imagine More, 2014 (video, 48 m 12s)
Go into a planning meeting with your own vision on what a good life might look like for you or your loved one – because if you don’t you will most likely come out of that meeting with somebody else’s vision of what that life might look like. And you can almost be certain that it will not be the one you would choose ...

Lorna Sullivan gives a thought-provoking presentation about self management for Imagine More in the ACT.

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