That’s a REALLY big word!

Advocacy is a word that means different things to different people.  As the organizer of this A to Z challenge, I thought it would be a good place to start us off on this particular section of The Road – a month long alphabetical celebration of OUR STORIES!



In our community there are lots of symbols that we use to express our advocacy – the blue and yellow ribbon, and the “Lots of Socks” campaign that the World Down Syndrome Day organization uses are two of the most well known.

There’s debate among advocates about what these symbols say to those outside of our community, and whether they, in conjunction with pictures and /or positive stories, help or hurt the cause of “social justice.”   In my humble opinion, one thing that these symbols, pictures, and stories do is show solidarity.  There are some days, for all of us, that just seeing them helps.  They let us know that we’re not alone.


Another “A” word that sparks discussion in our community is Awareness.   The debate goes something like this: How close are awareness and advocacy linked?  Does promoting awareness lead to change, or is it just a way for us to feel good about ourselves?


I don’t have the answer to these questions.  I can only share my perspective and how I look at things:
Change is slow – in order for it to happen, we need to keep having the difficult conversations.

Support is important – and often overlooked.  The main purpose of “community” is to come together around a specific area of interest.  Whatever we don’t agree on (and there is a LOT) the one thing we have in common is the love of someone who has Down syndrome.   We’re all trying to do our best.

Voice is key – and should include everyone.   As I write, talk, tweet, blog, or post, I’m telling my own story.  As a parent, it’s a story of love and caregiving.  Each parent’s story is unique and has value.  If we want to help the world what it’s like to be a person who has Down syndrome, we have to sit back and let our loved ones do the talking.  I share my story, and my memories, and I also try to share my son’s own words whenever possible.  For those who have trouble communicating with words, maybe there are other ways.  Josh tends to express himself with his clothes/wigs/accessories.  Pictures help him show the world how he sees himself.

Advocacy is…

I’m not here to define advocacy for you.  We all do it everyday.  How we do it is as different as we are.  Each path to advocacy is important.  My hope is that we can all learn to accept each other, just as we teach the world to accept our loved ones who have Down syndrome.

Let’s lead the world in advocacy by example – real inclusion and acceptance of all opinions, differences, and perspectives.

How do you define advocacy?  Do you know someone who has difficulty expressing themselves with words?  What are some other ways you could share their story?