Ambassador Guest Blog: Advocating for Change at Hill Day

Lily S. is a 17-year-old living with Charcot-Marie-Tooth (CMT) disease. Her passions include disability advocacy, menstrual justice advocacy, and education. Lily lives just outside of Charlotte, NC, where she enjoys traveling with her family, a good cup of coffee, and spending time with her dogs.

Lily S.

My recent trip to Washington, D.C. to advocate for disability rights was an experience that profoundly transformed me. As a woman living with a disability, I felt empowered and inspired throughout the week. From meeting with lawmakers to casting a vote on the House floor, every moment was filled with a sense of purpose and fulfillment.

It all began with a single email from the MDA’s advocacy team inviting me to apply to participate in MDA On the Hill, a day where people with neuromuscular diseases lobby their representatives and senators for legislation that would improve the lives of Americans with disabilities. I applied with a mix of hope and anxiety, uncertain if my application would be accepted. To my delight, a few months later, I received the long-awaited email: I had been selected to attend MDA On the Hill. At this news, I felt immense excitement; the opportunity for me to enact change was a prospect unlike anything I’d ever done before.

The day finally arrived, after the previous day’s training on advocacy and legislation, I found myself walking through the halls of the Capitol building. Adorned in my baby blue business suit and a slicked-back bun, I felt enlivened and ready to make a difference.

My first Congressional meeting with Senator Tim Scott’s office was a nerve-wracking experience. However, as I discussed the bills I was advocating for, my confidence grew. The meeting went exceptionally well, and I left feeling prepared for the day ahead.

In my second meeting, I used my sharpened advocacy skills and increased confidence to educate my Senator’s Lindsey Graham’s staffer about the issues facing my community and how passing the legislation we were pushing for would truly make a difference. He was receptive and compassionate, a response I deeply appreciated and hadn’t expected. The day was filled with a whirlwind of meetings, each one a unique experience. Some staffers were receptive, while others were more resistant. But I remained determined, using my voice to advocate for Americans with disabilities; this was bigger than myself, my community’s well-being was on the line.

After our final meeting, with Representative Ralph Norman, we stood outside with the camera crew and debriefed. To everyone’s shock and disbelief, Representative Norman walked out and asked if we wanted to join him in casting a vote. Of course, I agreed, unsure if I had heard his offer correctly. As I went about my day, I would’ve never dreamt of this opportunity; it was truly a once in a lifetime experience.

We anxiously waited for the bell to ring, a sign that voting in the House had begun. Once it did, we followed Representative Norman through security and into the Capitol building. It was a breathtaking experience. The architecture was stunning, and the energy was palpable. Representative Norman gave me a tour of the chamber, showing me where the Speaker of the House sits and allowing me to pretend to gavel in a vote. He also introduced me to his associates, including several prominent politicians. I was in disbelief as I stood in the same room as numerous notable figures.

One of the most memorable moments of the day was when I met Representative Alexandria Ocasio-Cortez (AOC). I was starstruck and couldn’t believe my luck. We talked about the bills I was advocating for, and she was incredibly supportive. She even gave me a hug and encouraged me to keep fighting for disability rights.

I also had the opportunity to cast Representative Norman’s vote, gaining a deeper understanding of how the legislative process functions. It was a surreal experience, and I felt honored to be a small part of the democratic process.

After our time on the House floor, Representative Norman took me on a tour of the Capitol building. Adrenaline was pumping through my veins; I couldn’t believe what I had just experienced, and the gravity of the moment was not lost on me.

At the end of the day, I felt a profound sense of accomplishment. I had met with lawmakers, discussed important issues, and worked with my fellow advocates to ensure our voices were heard. The experience has transformed me, giving me a newfound confidence and a deeper sense of purpose.

Since returning from D.C., I have been following the progress of the bills I advocated for. I am thrilled to report that the House has passed the Accelerating Kids’ Access to Care Act, which will provide critical access to healthcare for children with rare diseases. Additionally, the House has reauthorized the Rare Pediatric Disease Priority Review Voucher Program, which incentivizes the development of treatments for rare pediatric diseases. These legislative victories are a testament to the power of advocacy and the importance of having a strong voice in the political process. It is imperative that individuals with disabilities are the leading voices in advocating for change in our communities. It is a rewarding and empowering experience that can and will make a tangible difference in the lives of others.