Signing off

Representatives from DSANV and NDSS, with the late Steve Beck at the far right.

Two years after his passing, I found myself standing on a stage with the 2016 Stephen Beck, Jr. Advocate of the Year Award in my hands. I was floored—friends and colleagues had managed to keep the honor a complete surprise. Hearing my name mentioned alongside Steve’s was humbling beyond words.

Many at DSANV today may not know Steve Beck’s name, and if you don’t, I am truly sorry. Steve was a devoted dad, a relentless advocate, a generous mentor, and a longtime DSANV board president (beginning in 2007). Later, he served as Chairman of the Board for the National Down Syndrome Society until his untimely passing in 2014. Steve is one of the many reasons I said “yes” when asked to step in for these past months at DSANV.

But the truth is this: advocacy is never about one person. It’s about the 300+ moms, dads, and self-advocates who walk the halls of Congress every year to tell their stories. It’s about the partnerships forged between NDSS, NDSC, the Global Down Syndrome Foundation, The Arc, and so many disability organizations. It’s about the thousands of emails, calls, and social media posts that pour out from local families whenever leadership calls on them.

It’s about a lightbulb salesman like Steve and a tire salesman like Joe finding common cause. It’s about national groups working in collaboration, and local Down syndrome communities across the country pulling together—whether for legislation or for a convention. It’s about leaders taking time to walk a new parent through their first interview, or self-advocates bravely sharing their lived experiences. The Down syndrome movement has always been, and will always be, bigger than any one of us.

So yes, years ago NDSS handed me an award—but it really belongs to Steve, and to all of you. Every parent who made a call. Every self-advocate who spoke up. Every friend who stood in the gap. I was simply the lucky one holding the plaque. And in these past few months, I’ve been equally lucky to step into the gap here at DSANV—for new friends like Heather, Denise, Erin, Jennifer, Brian, and Emily, and for longtime friends like David, Kathleen…and Steve.

We don’t do this work for awards, résumés, or LinkedIn profiles. We do it because families deserve better. We do it because it matters. And sometimes, we do it in honor of a favorite lightbulb salesman who showed us what advocacy can look like when lived out with heart.

Thank you for letting me serve alongside you.

With gratitude,
Amy Van Bergen