by Kelly Kulzer-Reyes
They started popping up around the Down syndrome community about a year ago, at least that’s when I first saw them. “Advocate like a Mother” t-shirts have hit the stage with gusto, and at first I loved them. Really. They are cute. I’d even like to own one. I really like the light burgundy one that debuted at the Down Syndrome Diagnosis Network (DSDN) Moms Retreat back in September. I’d have one on right now if they had had my size when I had my wallet.
But as I started reflecting on my role in the advocacy world, and what it takes to advocate in today’s political climate, I started noticing that most of the kickass moms wearing these shirts weren’t running in the advocacy circles I cherish. I started wondering what advocacy means to these moms today.
Six years ago, after my daughter’s birth and diagnosis of Down syndrome, I entered the disability advocacy world. A well-meaning social worker warned my husband and me against saving money in Amelia’s name or naming her in a will. I knew I couldn’t stand by and let my already vulnerable daughter remain in poverty her whole life. So, I found the deepest pool I could, and I jumped right in.
I have presented at national and regional conferences on the “how to”s of advocacy and its importance. One of my presentations was even called, “Advocate like a Mother.”
I helped pass a piece of landmark legislation, the Achieving a Better Life Experience (ABLE) Act. I have embraced the mantra of “Nothing For Us Without Us” held so dear by my disabled counterparts. I have learned to balance what I hope for as a mother of a disabled daughter with the greater needs of the disability community, and I do not presume to understand what having a disability is like. I hope to be an ally, and I know my limits.
I have witnessed a Congressional vote, and I have my representatives’ staff on speed dial. I have testified for California’s ABLE program to remove their Medicaid Clawback which also passed, and I convinced my local assembly member to bring forward an ABLE tax deduction bill. This one hasn’t passed yet, but it will. Advocacy is a marathon, not a sprint.
My representatives’ staffers (both federal and state) even answer the phone when I call, most of the time. Advocacy is an important part of who I am now and how I have evolved over the past six years.
Advocacy is work, much like parenthood is. It is grueling, largely thankless, work. In a similar vein, parenthood takes colossal effort. And like parenthood, seeing the benefits of advocacy can take a lifetime.
And almost exactly like parenthood, nearly every single one of us is capable of advocacy, but conflating advocacy with parenting is problematic.
Advocacy involves understanding policy. And forging relationships. And making connections with community leaders. It requires diplomacy and savvy, gumption and grit.
To be an effective advocate, your goals must be bigger than your own child’s future. You must understand how a policy change might impact the whole community. If your goal is to only impact your child, not the broader community, you are not an advocate. You, my friend, are a parent. And that is good.
Parenthood is noble. It is vital. It is the most important thing I do each day, but it is not advocacy.
Attending my daughter’s Individualized Education Plan (IEP) meetings does not make me an advocate. It makes me a mom.
Arguing for her Free Appropriate Public Education (FAPE) in her Least Restrictive Environment (LRE) are unnecessarily hard, but these arguments do not make me an advocate.
I purposefully do not work on special education advocacy because I parent in this area right now. I am close to the subject matter, and this makes it hard for me. I know there are some amazing parent advocates out there making strides in this area, but I am not one of them.
Most parents focus intently on their own children, and they should. Our children count on us to stand up and speak up for them until they are ready to speak for themselves. We fill that role. We are parents.
I attend IEP meetings, and I communicate with countless teachers, staff, therapists, and special education directors. I make sure everything is in writing. I make sure my daughter’s educational needs are met, just like I do for my sons. But I do this because I am their mom, and I love them.
I do this because I parent.
You can be a parent who advocates. I consider myself one. But, parenting and advocating are distinct acts. Both are important. Both require patience and passion, but they are different. And most importantly, if I can do both, I bet you can, too.
I don’t know everything I need to know to be an effective advocate, but I have learned who to trust and who to ask. I have also learned who not to trust, and who not to ask. These two lessons have been painful and disappointing, but I am grateful that the lessons have been learned.
Advocacy requires a long view focused on the change you want to create. It requires understanding who to ask and how to ask it. It loves critical thinking and puzzle solving. At the legislative level, it takes understanding the background of why a policy or a law currently exists, and how you want it to look twenty, thirty, or forty years down the road. It anticipates arguments. It explains relevance.
You cannot hold a grudge and advocate effectively. There are no permanent friends, and no permanent enemies in advocacy. And sometimes, that is painful. Advocacy swallows pride.
If you find an “advocate” unwilling to compromise, unwilling to collaborate, unwilling to join forces, you might want to question her motives. She might not be the advocate she claims to be.
If, however, you find someone willing to listen, collaborate, and troubleshoot, even when she disagrees with you or with your politics, you may have found the world’s greatest gift: a like-minded pillar who will help you get through those advocacy moments laden with frustration, sadness, and anger. Because there are many of these moments. There are so very many. But, with an eye towards a better future for my six-year old and people like her, finding these pillars may help you find joy and success in advocacy today, and perhaps, tomorrow will present an opportunity to make the world a tiny bit better.
All while wearing that adorable shirt, assuming they have my size when I have my wallet on me.