In the 45-minute session, we had a lot to cover, and team member Mardra actually VOLUNTEERED to drive!  (Love her!) Sidebar – you know you’re in the right place, on the right path, when the members of your team each have a great resume of specific talents that are different from yours but at the same time they really GET you and you talk together like you’ve known each other FOREVER!  I am grateful every day that I found them and that they can put up with my shenanigans.

ANYWAY – Mardra prepared a fantastic presentation and asked Karen and I specific questions in order to prepare us.  One of those was:

Why do you choose to share on-line?

followed by:

Why is it important specifically for advocates and people involved within the DS community to share their stories publicly?

I managed to come up with “bullet point” or “Twitterized” versions of my answers to those questions for the purpose of the session, but I feel like I didn’t really explain my perspective in terms of some of the recent controversies swirling around in our community.

I’m the one with the big ideas, sometimes too big.  (right Mardra and Karen?)  I’m also the research / technology geek, and the one with time on my hands to work on learning new technology, find the articles, and think about “what’s next.”   

There’s been an ongoing discussion in the Ds community about things like “awareness vs. advocacy” and the use of “inspiration porn” or conversation starters like “odd socks” to raise awareness.   One school of thought is that by saturating the media with “cuteness” we ignore the reality and fail to actually change minds or create action towards increased social justice.

Okay –  I hear that and understand where it comes from.  

But….

In my humble opinion (and this is the GREAT thing about the internet, we can all freely express our own perspective) I think we need to talk about all the aspects of our lived experience.   We have to say – “Hey!  I have a kid who I’m proud of.”  ”Hey!  I was touched when the other kids at my daughter’s school voted for her to be prom queen!”  ”Hey!  LOOK!  My son made the winning basket in the game and other people cheered!”

Are we expecting it to create immediate change –  well no….  But we’ve been on the other end too.   We know what it’s like NOT to have those moments.  If I want to celebrate with someone else who does get to have them, I will.  I’m sorry if you think it’s detrimental to “the cause.”

I also tend to look at things from the lens of “social history.”   What I mean by that is this:

Everyday stories and experiences of life as we know it, when taken as a whole, tell others what it’s like to be us.   

In another session this weekend I saw a timeline that showed when some of the important pieces of disability legislation were passed.  It really caught me off guard to see – all together – what has been done since my son was born in 1987.  For instance – the ADA was passed when he was three.   I can remember thinking then – this is going to change things SO much!   Then it occurred to me…..   What about the people who have kids under say, 10?

For them, it’s a completely different view.   The ADA has always been there.  IDEA has always been there…   That may play a big part in why we see the happy, inspirational stories differently.  (Maybe not, but it just might make our perspectives a bit different)  Another thought I had was about how I look at stories about parents who were pressured into institutionalizing their children as part of our social history.  It’s not ancient history – it’s not even two generations ago.   So for those parents, the “feel good” stories are something that they could not have imagined when their child was born.   And already we’re saying that we need to stop telling them?  Change happens slowly, maybe some day we won’t feel the need for cute, inspirational stories, but for now, I think, they serve an important need in our society.

So to answer the question why do I write – it’s to provide balance – to talk about the good, the bad, and the mundane.   It’s also to add my 2 cents to the social history narrative.   I write what it’s been like for me.  What I find interesting.  What’s going on in my head.  I share what I find interesting, and comment according to my perspective.  I also try to give Josh an outlet for his own voice.   I write about things he tells me in his own words.  I ask him if I can post his pictures on the internet for his “fans.” 

Most importantly with “The Road We’ve Shared” we’ve started creating a space where other parents of adults, who share the same “social history” can tell their story.  Adults who have Ds are living twice as long as those who came before us (Caucasian adults at least, but that’s another series of posts).   Our children were born during a unique period in history.  We have a completely new narrative to write.  What’s it like to deal with adult issues and aging?  I for one don’t want to leave that history to others to write for us – no one perspective can accurately paint a complete picture. Together we can create a rich tapestry of different aspects of the journey.  I want to include many voices and perspectives about what it’s been like for us so that the next generations can look back and hopefully say - 


“Hey! Look what it was like for them! Things sure are different now!”