That Mom

I found out last week that I’ve been selected for Wisconsin’s Partners in Policymaking program. (a little info here) It’s a 6-month training program to help people with developmental disabilities or family members of people with developmental disabilities be effective communicators and advocates at the legislative level. Graduates of this program have gone on to do anything from organizing a legislative breakfast to being elected to the state legislature.

Gulp.

This is advocacy on an entirely different level than I’ve experienced thus far.

Until now, my advocacy has taken the form of gently suggesting people use people first language, letters to hospital administrators politely asking that their staff not say things like “I had a 17 year old Downs last week” (yuck), and even a conversation with our state assemblyperson over coffee about the concept of “nothing about us without us.” It’s been pretty basic and straight from the heart, with no clear agenda other than “please treat my child like an actual human being and not someone to be patronized or ignored.”

You see, a few weeks after Rowenna was born I made a promise to myself. I promised myself I would not be “that mom.” I didn’t want to be “that mom whose kid has Down syndrome,” the mom who people avoid because they don’t want to hear the latest tirade about some new policy or law or injustice. I didn’t want my life to be consumed by this diagnosis. Just like I want Rowenna to be “Rowenna, who happens to have Down syndrome” I want to be “Melissa, who happens to have a daughter with Down syndrome.”

However, I have a degree in political science, a love of writing, and an incredibly over-developed sense of justice. That’s like the perfect storm for creating a staunch advocate.

As I meet more and more families in the Down syndrome community, I realize that not everyone has the interest or desire to advocate at the government level. I see that every family chooses its battles and the area of legislative involvement is not often chosen. I understand why. It is frustrating and crazy-making and time consuming. If I didn’t already have a degree in political science and a secure understanding of how our legislative system works, it would be daunting, maybe even scary.

On top of that, my state government dumped a pile of legislative nonsense in our laps. I pretty much heard God laughing and shaking his head saying, “You’re not going to advocate? Riiiiight.” I looked at what my state had in store for people with developmental disabilities, looked at Rowenna, and dug in my heels. Nothing about Rowenna, without Rowenna. Until she is able to speak for herself, I intend to be her voice.

I applied for this Partners in Policymaking program as a first step. For me, this goes beyond Republican and Democrat, conservative and liberal. The rights demanded by those with developmental disabilities are rights that help everyone – on both sides of the aisle, of all abilities.

So over the next six months I’ll be thoroughly immersed in the history of disability rights, the ins and outs of public policy, and learning how best to make my voice heard. My goal in it all is to be articulate, patient, and determined without losing my own identity and letting my life revolve solely around advocacy. I still want to be mom, wife, friend, massage therapist, knitter – what have you. I don’t want to be “that mom” and I won’t be “that mom.”