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Down Syndrome NSW
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Monday, 21 October 2013

Down syndrome awareness ... what is it, why do we need it, is it enough?

October is Down Syndrome Awareness month in North AMerica, and here in Australia we have formally claimed the third week of October as Down Syndrome Awareness Week for about 20 years.

Raising 'awareness' about Down syndrome has been a high priority for Down syndrome support groups around the world since their emergence in the earlier 70s, with well developed campaigns developing particularly over the last two decades. Achieving a balance between presenting positive, hopeful messages to both families and the broader community while advocating for the very real support needed by people with Down syndrome as individuals has sometimes raised robust discussion, even within the Down syndrome community.

More recently a push 'beyond awareness' has been noticeable, particularly from individuals (often parents, who have always been at the leading edge of social  and cultural change affecting our sons and daughters) capitalising on the wide and easy reach of social media. Some commentators make a case for more rapid and radical evolution than others, some voices are more strident than others. The call is broadly for awareness to give way to more proactive acceptance, advocacy and frank activism for and by people with Down syndrome.

Is this the natural evolution of the concept of 'awareness', or is it a response to external drivers  such as new, less-invasive prenatal testing (expected to markedly reduce the population of people with Down syndrome), or to recent research that has stimulated discussion about whether Down syndrome needs to be cured, is it part of general social change around access to information, rights and 'ableism' in disability circles ... or all or none of these?

These links are just a sample of the direction of current discussion about awareness and beyond:

Down Syndrome Awareness Month: Why It Should Matter to Everyone
Sipping Lemonade, 1st October 2013
Knowing something exists is far different from having a true understanding. It’s like seeing pictures of the Eiffel Tower vs. taking pictures from the top. Like watching a romantic comedy vs. falling in love. Like walking into a Babies R’ Us vs. holding a sleeping newborn ...
Big Blueberry Eyes, 20th March 2013
... Where do we go after raising awareness? I have been raising awareness on my blog for 7 years now, and on FB for about 4 or 5 years. In raising awareness I feel like I'm preaching to the choir. The majority of the awareness seems to happen within the Down syndrome community ..

What’s the point of Down syndrome awareness?
Mark Leach, Down Syndrome Prenatal Testing, 8th October 2013
October is (US) National Down Syndrome Awareness Month. But, what’s the point of raising awareness about Down syndrome? ... we have Down Syndrome Awareness Month because not only have people with Down syndrome not been included in the telling of our shared experience, for most of our history they have been purposefully excluded, segregated, and hidden from society. This exclusion nurtured ignorance about Down syndrome, and ignorance begets fear. The awareness is needed to enlighten and eliminate this fear ...

Down Syndrome: Awareness to Acceptance
Jisun Lee, Kimchi Latkes, 10th October 2013
What is “awareness”? How can awareness be helpful? Can it be harmful? Where can it lead? October is National Down Syndrome Awareness Month. As I’ve watched and participated in various awareness efforts, I wrestle with the concept and all it entails.

Will an awareness month for my child’s genetic condition help create what I really want—a place at the table of a fully inclusive society? Can the “awareness” alone possibly give rise to the monumental shift that our society needs?

Exposing quotes that reinforce Down’s syndrome myths: The Truth
Hayley Goleniowska, Special Needs Jungle, 9th October 2013
Posters and leaflets dispelling common myths and setting out facts about Down’s syndrome are often created wonderfully by charities to distribute to new families. So rather than reinventing the wheel, I thought I’d highlight a few quotes that have been said to me over the years, think about the subtext behind them and use them as a springboard for explanation of the realities ...

Keeping it Real
Down Wit Dat, 15th October 2013
I'm not so keen on the "awareness" any more; the colours, the gew-gaws, the posters. Instead I'm all about the education or the advocacy part. Even the activism part. One could argue that I always was more of an advocate than awareness raiser given the topics of most of my posts in Octobers past... I may partially agree with you too. However, as I've stated before, I'm done with awareness. Instead, I'm going to advocate. Hard.

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