When I hear the word advocacy, I first think of something at which I’ve become very adept: self-advocacy. I advocate for myself in ways both big and small. As an adult living independently with spinal muscular atrophy (SMA), if I don’t express my needs and wants to someone else who can help me, I likely will struggle to fulfill them on my own. I have to ask people to help me take a sip of water so I don’t go thirsty, help me shower so I don’t get stinky and take me to the grocery store so I don’t go hungry. I even have to ask people to hug me so I can express my excitement in seeing them. Learning how to tell people how to help me, as I’ve said before, is an acquired skill. But I know that expressing my needs or the needs of my community is the foundation of effective self-advocacy.
This idea has been on my mind recently as I process the experience of participating in MDA’s Inaugural Public Policy and Advocacy Conference. Although I’m certainly no advocacy expert, I think people like me in the neuromuscular disease community make natural advocates because we are so used to talking to others about our needs and wants in our daily lives. Spending time in our nation’s capital with dozens of other MDA families gave me a new sense of empowerment and taught me to apply a skill I’ve already honed in my personal life to the public policy arena. It was inspiring and exciting to see so many people come together in one place to do our part in making this country a better place for people who live with muscle-debilitating diseases.
The conference itself was only three days, but we covered a lot of material. At times I felt like I was back in college preparing for a final exam. But if this were a test, I had a fail proof study guide: my own life and experience. I learned that the best argument I can make on behalf of any of MDA’s policy priorities is my own story. So, good news, everyone. I passed with flying colors!
When we met with our representatives, we were encouraged not to get bogged down in the details of budgets, percentages or other statistics. Instead, we were encouraged to share our own perspectives. In the case of one of our asks, to support provisions that guarantee access to accessible air travel for people with disabilities during this year’s FAA reauthorization, I was able to relate the mishaps I’ve had when I’ve flown the sometimes not-so-friendly skies. Every person who relies on a wheelchair fears it getting returned after a few hours in the baggage hold as a non-functioning inanimate object. We know that this common experience is due to the lack of training airline staff receive about how to properly care for people with disabilities and their equipment. However, in today’s global market, being able to fly around the world is a necessary part of life – and not something any person with a disability should be prevented from doing.
Similarly, as the administration and Congress weighs changes to health care laws, I expressed my support for affordable healthcare for all Americans – because I know how important that has been in my life as an adult with SMA. Many people who live with chronic illness and lifelong disabilities depend on government funded healthcare like Medicaid and Medicare, and I am one of these individuals. With the future of affordable healthcare unknown at this time, it was more important than ever before to ask lawmakers to support a system that helps MDA families access the care they need.
My experience at the conference was unlike any other I’ve had since becoming the national ambassador. Although we were together for a few days and only touched on a small selection of topics and issues that matter to MDA families, it was exhilarating to participate in the democratic process with so many other passionate individuals who care deeply about improving the qualities of life for people living with muscular dystrophy, ALS, SMA and related diseases.
Of course, no recap of a trip would be complete without some mention of my favorite part of travel: meeting new friends. One of the most memorable aspects of the conference for me was getting to know the incredible, resilient Fulcher family. Last month, Becky Fulcher, a vibrant young woman living with Friedrichs Ataxia passed away unexpectedly before being able to attend this year’s advocacy conference, which she was very excited to be a part of. Becky, 21, was a third-year student at Wichita State University where she was majoring in communications. As a proud member of the Kappa Kappa Gamma Sorority, she had recently taken a strong interest in campus politics. Becky was passionate about advocacy, so her mother Amy and brother Ryan honored her memory by attending the conference in her place. Becky and her family’s commitment to advocating for the MDA community was not only inspiring to me but to so many others who attended the conference. I’m so grateful they chose to continue her legacy by joining us in Washington, DC.
Editor’s Note: This feature on Becky Fulcher appeared in the Spring issue of Quest Magazine shortly before she passed away
Becky Fulcher, who was diagnosed with Friedreich’s ataxia (FA) at age 8, attended MDA Summer Camp every year until she was 17. She’s also attended 11 Fill the Boot events in her hometown of McPherson, Kansas. “My favorite memories are when my family would come out and hang out for a while,” Fulcher says. “My aunt always brought my cousins and would give them money to drop in my boot.”
Now 21, Fulcher is studying communications at Wichita State University. “It’s a pretty small town,” Fulcher says. “We don’t have very many people affected by neuromuscular diseases.” Knowing that the fire fighters of the McPherson Fire Department are working hard for her and others like her has made such an impact on Fulcher that she drives back to her hometown each year to support the department during their Fill the Boot events. “They know me, and they have been a big part of the community,” she says.