It’s Down Syndrome Awareness Month, and there are a few folks who have helped me to learn what it is to be an advocate. So I’m going to talk today about another blogger who is also not from ‘round here, proving yet again how small our world can be.
I found Down Wit Dat in my pre-I’m-a-blogger travels. I remember seeing the tagline: Our kid has more chromosomes than your kid… and I smiled. (In the beginning I saw this blog as a kind of counterpoint to Downs Side Up, which I introduced a few weeks ago.)
I believe the first blog I commented on was: “Say Hello to the other shoe” where Jen, Momma DwD wrote:
“Once upon a time, I said that finding out about his heart issues was the hardest day of my life. Now we are finally here and dealing with all of this, I really am starting to know what ‘hard’ actually looks like. It’s not a nice feeling. Not at all.”
Though this person was, is really, a stranger to me, I
knew know this fear and the hard days ahead. As time went on her dear little man had heart surgery and she documented the whole way. It starts with Prelude then she takes us along on this hard road all the way to Coda. Seven parts, all worth reading.
Jen is a smart and articulate, nurse, mother, advocate, writer and many other titles. She is as complex as any other advocate and momma could be, and I love her for it. I love that she brings to “the table” thoughtful commentary. She is also, in some ways, the real life version of some of my fears/concerns with blogging as a parent of an adult child. Her world, the world she and her children are part of creating, is different than mine and although her path and our path have meeting points, they are not the same road and, even if they could be, should not be driven the same. Sometimes I find that though we are on the same team, we look like we are fighting different battles, perhaps we are.
The thing is, she (as is logical) comes at the issues with the benefit of time. She advocates for and is creating a changed world for her children. I come at some of these issues with a different sense, this is now for my child. Preventing a fire and extinguishing a fire require two very different actions, but both important, nay critical. That said, she pursues all of the issues like they are on fire. She is passionate and smart and if there needs to be a change, she is more often than not, in the ring.
There are a few issues where she has graciously allowed me to listen and parcel out my opinions, for example this one, “A step backwards for Down syndrome advocacy” an incredibly well thought out and articulated post about the call for special training of first responders. It’s a surprisingly divisive issue.
Lately, Down Wit Dat has hosted a T21 link-up on, you guessed it, the 21st of the month.
These are open to disability activists across the spectrum and I have learned much from reading these blogs. For example, in February the link up theme was ableist language. Wow. I didn’t know what I didn’t know and there’s so much more to know!
So, there you go. If you’re in the mood to think – go now. I’ll wait.