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.


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.”


5 responses to this post.

  1. I have no doubt that you will find a way to be a fantastic advocate without being “that mom.” Thank you for doing this, what an amazing task you are taking on, you will rock it.


  2. That’s so exciting! You’re going to do great! I live in the DC area, so I’ve often thought that I could/should do more by advocating at a government level, but no way, that’s just not my thing. It takes someone much more tenacious than me to do that, but I applaud those that can/do. At my base level, I’m just hoping to create a strong self-advocate in Samantha.

    Rowenna is a lucky little girl to have you as her mommy! You will certainly make an impact on the people that can make change. 🙂


  3. Awesome!!! WONDERFUL! Congratulations! I want to do it too! It looks like fun! Okay maybe I shouldn’t say “fun” but then again, it does! I’m so excited and happy for you!!


  4. Posted by Marita on December 21, 2011 at 5:18 pm

    I am so proud of you Mel. I have always admired that you speak your mind and your beliefs strongly. It’s not something I can always manage. I always seem to need more time to gather my thoughts and my words, and then I’ve missed the boat. You always seem to know what to say, and even more importantly, you follow through and do it. I will never forget how awe struck I was when I first realized that when you say, “I am going to write a strongly worded letter,” you do just that.

    I am so proud that you are going forth and speaking out about the important things that you believe in. I am so proud that you are representing Rowenna, and me, and all the people who agree with you but have a harder time expressing it. Go forth and write a strongly worded letter!


  5. Having worked in the schools on and off for several years, having a child with a metabolic disorder (which isn’t exactly a disability but it can create problems that are akin to having a disability), and having spent recent years back in college for a(nother) degree in special education, plus knowing what the Dictator has been pulling in our state, I always find myself not wanting to be “that mom” either…but I think I may end up being an advocate, too. And that’s okay. So, you do what you need to do and advocate not only for Rowenna, but also for yourself, other parents in your situations, and for children that cannot yet self-advocate.


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