Thursday, October 1, 2015

31 for 21

Once again it is October: Down Syndrome Awareness/Acceptance month.  In years past I've posted daily.  Making the commitment this year feels overwhelming, but I'd like to see how it unravels.

I'm looking forward to finding the words to express my recent thoughts and feelings on awareness and acceptance.  I have so many so often, but I've become increasingly aware of my desire to protect Cora's privacy, as well as considering how best to advocate for her through what I share.  Lately my thoughts end up circling inside me and don't find their way out.  But I would like to work on sharing my perspective, while still honoring and advocating for my daughter.  I recognize that I am not a person with a disability, and I don't want to attribute my own voice to Cora.  But at the same time I recognize how important the parent advocate role is in the disability civil rights movement, and how much has been achieved through the tireless work of parents.  I want to contribute to this hugely important process and to help build a world that will give my child more choices and opportunities.

As time goes by the people in our lives get more comfortable with the fact that Cora has Down syndrome.  There is no longer the surprise of her diagnosis, or the worry of her open heart surgery.  She is known.  She is loved.  She is simply Cora.  And as time goes by, it starts to seem like Down syndrome is no big deal.  And much of the time, it really doesn't feel like it is much of a big deal.

But when I think about how much more progress is needed to improve the way the world sees those with disabilities, I understand that it is a big deal.  I wish it weren't. I truly, truly wish that difference weren't automatically perceived as less in our world.  I wish that my dearest hopes and dreams for have a meaningful life, with meaningful work, meaningful friendships, and the opportunity to get a meaningful education didn't feel like it will have to be a struggle.

But the struggle certainly feels real.

So for that I will try to take to heart this once yearly commitment to write.  It may be a small thing.  But I have to believe that even the smallest things will start to add up.

No comments:

Post a Comment

Thank you for sharing your thoughts with me!