DC Week of Action (and Joy)

By Grace Heuer

I've had this specific dream periodically ever since I was little. The context of the dream differs but the theme stays the same. As something terrible happens around me, I try to scream but no sound comes out. I feel completely helpless, not just because I can't make any sound but because I can't get anyone to listen.

I know I'm not the only one who has felt this way. This feeling of helplessness follows us into real life when we are fighting for basic human rights and facing people who don't want to hear what we have to say. I think of this dream sometimes when advocacy starts to feel like running into a brick wall. Our job is to convince people to listen by sharing our stories and experiences. This task feels impossible sometimes but we have to do it anyway. Otherwise, who will?

Little Lobbyists was recently invited to attend a week-long advocacy event with the Care Can't Wait Coalition and other partners. Throughout the week, representatives from Little Lobbyists attended events in DC such as movie screenings, symposiums, and receptions while also spending time on the Hill in meetings. The goal of the week was to focus on the conversation of caregiving and recent developments relating. 

Even though the weather was predicted to be hot and humid, my mom and I still enjoyed a 30 minute walk to the Families USA Symposium. The main topic during the Symposium was care affordability and the future of Medicare. By the time we arrived we were sticky and overstimulated but got to experience the beauty of DC along the way. We had brief accessibility issues getting in the building but a kind security guard went out of her way to walk us around the building to show us where to go. 

During the symposium, we heard from a lot of perspectives that we don't usually encounter in health policy conversations. This included Congressional staffers, an Assistant Director of Medicare at CMS, and speakers from the AARP. Getting to share a room with people who play such important roles in healthcare policy was inspiring. 

On the second day, we attended a Medicaid briefing hosted by the Care Can't Wait Coalition. This briefing specifically focused on caregiving and what needs to change going forward. I expected the morning to be information dense and informational. It was, but we also enjoyed several personal stories from caregivers that brought tears to everyone's eyes. 

While adults talked about polling numbers and the future of Medicaid, kids played and laughed in the hallways. Their voices carried through the building, sometimes cutting through conversations about policy and statistics. It was a good reminder of exactly why we do this. 

The new polling data showed that the majority of Americans consider healthcare to be one of their top issues when it comes to voting. I think we all enjoyed hearing the results because it made us feel like we had people on our side and that we aren't the only ones who care about this issue.

The afternoon of day two and the morning of day three were spent on Capitol Hill, really digging our hands in. Two days of walking up and down seemingly endless corridors, trekking through tunnels, and even enjoying the occasional train ride as a special treat. Over these two days, we must have gone to fifteen to twenty offices and had meetings at four or five. 

We even were able to stop by Lindsey Grahams’ (now Darline Grahams’) office and give our condolences. You could smell an abundance of flowers before even walking through the door. 

At many offices we were turned away and blown off. Unfortunately, it's a reality you have to be prepared for before going on the Hill. The four of us (myself, Cortney Heuer, Victoria Schiano, and Kim Crawley) spent a lot of time regulating and debriefing in quiet hallways to get on the same page and be in the right headspace before heading into another office. But, lots of other offices were more welcoming and we had multiple productive meetings with staffers where we felt we really had a positive influence. For a “kid” who is so often spoken about, rather than spoken to, that was really impactful.

Staffers asked questions, took our experiences seriously, and wanted to know what we thought their constituents needed. 

This experience changed me. For so much of this week I focused on the negatives. The moments we weren't listened to, accessibility issues, and what our future looks like. By the end of the week I realized that I could be much more productive if I looked at advocacy through a less narrow lens. 

Sometimes change doesn't happen all at once but that doesn't mean we aren’t still making a difference.

I have a new dream now. 

I have a vision that one day soon the voices of disabled people will be heard and our children won't have to fight to be treated like humans. I dream that being a kid will come before being a disabled kid and that they will never doubt their own worth. 

This week showed me that parts of this dream are already a reality. 

Kids’ voices are heard and they are treated like human beings. I watched Xiomara go up on stage with her mother Elena, Little Lobbyists’ executive director, at multiple events knowing she belonged in that space. She was simply a confident and self-assured kid. Her disability wasn't the first thing anyone saw, and she wasn't just something to pity. 

As I talked with other incredible advocates, our conversations often steered away from politics and disability and more towards our accomplishments and interests. I enjoyed learning more about people, not just their work.

Before I joined Little Lobbyists, I didn't always see the little moments in disability advocacy. I went about advocacy with anger and frustration, and focused only on the bad. This week reminded me of the joy in advocacy.

The joy of hearing kids laughing in the hallways while adults talk about the policies that will shape their futures. The joy of watching Xiomara take the stage knowing she belongs there. The joy of sitting across from a staffer who genuinely wants to hear what we have to say. 

These moments may seem small but they all fit into a much larger dream. Sometimes change doesn't happen all at once but that doesn't mean we aren’t still making a difference.