Some Final Thoughts About the Hill

I blogged a bit about #BWW2017 after we finished up the Buddy Walk on Washington, but I was typing on my phone and mostly just wanted to get the pictures and highlights up. So here are some more formed thoughts, now that I’ve had a week to let everything settle. And if you make it through my thoughts, you’ll find an interview with my partner-in-crime, Theo, about his thoughts on #BWW2017.

This being my first Buddy Walk on Washington, I wasn’t really sure what to expect. I was mildly disappointed to realize that we weren’t necessarily going to talk to a lot of reps in person—instead, we’d be talking to their staffers. But I do realize that the staffers are every bit as important as the congresspersons and senators—in some ways, they’re even more important, because they filter out the needless commentary and bring to the representative what is salient. And indeed, I talked with numerous staffers and found them all to be helpful, knowledgeable, and willing to listen and discuss the topics we were discussing.

What topics were those, you might ask? At the request of the National Down Syndrome Society:

  1. Sponsorship for the three ABLE support bills that have just been introduced, which will strengthen the ABLE act. (The ABLE act, if you’re not familiar with it, allows people with disabilities to save for their future without risking the loss of government services. Before the ABLE act, people with disabilities could not have any sort of money in their name because it could disqualify them from receiving services.)
  2. Support on fighting Medicaid block grants and caps, which would be devastating to the disability community. (Block grants and caps aren’t going to help anyone on Medicaid, but they would likely devastate the disabled community that uses services funded by Medicaid—and there are many such services.)
  3. Participation in the bipartisan, bicameral Congressional Task Force on Down Syndrome.

I added one more topic: Support on fighting voucher-based education, and support on strengthening the public school system with regard to inclusion for students with disabilities.

Let’s be honest here: Most of the people I met with were Democrats, and most Democrats are on the same page as we are on all of these topics. So really, my job was to preach to the choir—and to put a face on the issues. In other words, “I know you agree that Medicaid block grants would be a bad thing, but let me introduce you to my child and explain to you why they would be devastating for him and his tribe. And by the way, I fully expect Sam to want to work at a competitive, integrated job when he grows up, so please support those ABLE bills so that when he’s working, he will be allowed to save for his future.”

But I did meet with a Republican staffer as well (for Congressman Tom McClintock), and I was impressed by how willing the staffer was to sit down and listen to my thoughts on the matter. Will it change anything? Who knows. But at least I felt heard.

It felt good to be heard. It felt good to introduce my children and explain why we fight for these things. It felt really good to introduce my articulate nine-year-old and let him, in his own words, explain what he wants in the future for his little brother.

And honestly, I think my nine-year-old was my ticket in. The staffers and congresspersons loved him, and I’m quite sure they gave me more time and attention because I had Theo with me. I had Sam, too, but Sam was quietly munching goldfish crackers much of the day, unimpressed by the grandeur of his surroundings in the House and Senate buildings. If you’ve met Theo, you know “quiet” is never a word that applies to him. He was chatty and charming and the perfect secret weapon to grant me entry into this world. I’m pretty sure I should take him along on all my advocacy efforts in the future!

Standout moments from the day? There are many, but here are a few:

  • Meeting our own congressman, Mark DeSaulnier, even if it was very brief because of a scheduling conflict. I am very much a fan of our congressman and was thrilled to get to meet him.
  • Meeting Congressman Eric Swalwell, who took time out to chat with us personally. We’re not in Congressman Swalwell’s constituency, but that didn’t stop him from coming out to talk to us. That meant a lot.
  • Meeting Congresswoman Maxine Waters, who was warm and kind and welcoming and supportive. I met her briefly when she presented me with the award that the California Down Syndrome Advocacy Coalition won, and I was impressed by her warmth and support.
  • Meeting Senator Kamala Harris’s staffer, Grant Barbosa, who really stood out as incredibly knowledgeable and informed on all the issues and who gave us as much time as we wanted to share our views.
  • Meeting Senator Dianne Feinstein’s staffer, Pete Curran, who also stood out as very knowledgeable, friendly, and interested in our opinions.
  • Meeting the many, many congressional staffers who went out of their way to be helpful and provide me with the names of staffers who work on disability issues, so that I can reach out to them in the future when we need their congressperson’s support.
  • Partnering with four other amazing advocates from our state: Carolyn, Sandra, Sean (Sandra’s son and a star of one of my favorite TV shows, Born This Way), and Patricia. Those four made up Team 2 and mostly handled Central and Southern California (while our little family handled Northern California), but we met up for the meetings with our two state senators, and it was wonderful to get to spend some time with them!
  • Getting off my aching feet after a long day of walking nine miles back and forth on Capitol Hill.

#BWW2017 was an experience we won’t soon forget. My husband had the job of managing Sam most of the day, but even so he said it was a real life highlight for him—the chance to walk the halls of Congress with congresspersons and senators, and to sit in their offices and talk about things that matter with their staff.

And without further ado, how would you like to hear from my secret weapon? Theo, take it away!

What was your favorite part about our day on Capitol Hill?

My favorite part was when we walked through the tunnels. It was my favorite part because I thought it was really cool that you could take a tunnel from one place to another! I liked talking to Eric Swalwell’s staffers, too, because they were really nice. My favorite was Mark DeSaulnier, then Eric Swalwell.

What did you talk about with the staffers when it was your turn to talk?

I talked about how Sam doesn’t need to be in a special ed class. He’s just fine in a regular class.

Do you know how important what you did was?

I don’t know.

Why do you think it so important?

Because people with Down syndrome should be able to participate even though they learn a little bit slower.

Is there anything you wanted to say to Congress that you didn’t get a chance to?


And there you have it, folks. The day according to Theo!

Look waaaay over on the very bottom right, and you’ll see me (in a blue patterned shirt) with Theo and a scowling Sam on my lap. Chris is right next to me, but his face is so darkened by shadow that you can’t see him!


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