Building Community, Fighting Budget Cuts

Sarah Schwegel is no stranger to telling her own story. At age six, Sarah began advocating for disability rights as a National Goodwill Ambassador for the Muscular Dystrophy Association, traveling the country to meet with sponsor organizations and share her experiences.

As an adult, Sarah is still deeply involved in disability policy and advocacy through her work as a leader and community organizer at Paraquad in Saint Louis, Missouri. Additionally, Sarah serves as president and outreach coordinator at FestAbility: A Celebration of Disabilities, which celebrates the disability community through education, empowerment, and unity. “We’re trying to make Saint Louis — and honestly, the whole country — a more accessible place,” she said.

Sarah’s innovative leadership created remarkable results in 2021. Missouri’s Consumer Directed Services (CDS) program — the program that provides services and supports that allow people with disabilities to live independently — was slated in the governor’s recommended budget for a 7.5 percent cut. Such a reduction would have put many people in Missouri at risk of losing access to this vital service and, with it, their independence.

Sarah Schwegel has been speaking up for disability rights since she was six years old. She said: “We have power when we work together as a community. When we have more voices and more power, that’s when change happens.”

Social Media for Social Action

A CDS client herself, Sarah fought back. She launched a statewide campaign featuring partnerships with local universities, engaged the media, and facilitated discussions between advocates and decision-makers, creating an enormous coalition of advocates and disabled Missourians.

The centerpiece of the campaign was two well-attended virtual rallies called “Days of Action” that Sarah devised, promoted and hosted. Participants joined a social media commenting party, posting to the Facebook profiles of the budget chair and co-chair for the Missouri state Legislature to share facts, stories, and stats about the importance of CDS in people’s lives.

As a result of these efforts, the budget cut was avoided, and the state actually considered an increase in funding.

Sarah is always seeking new ways to lift up the voices of people with disabilities and to educate her community about health equity issues. She recently produced an art show in which 21 disabled Missouri artists who use Medicaid or Medicare told their stories of navigating the system.

“I’m really excited to continue our story sharing work, letting people know how important Medicaid is, and removing those stigmas,” she said.

Sarah views working with fellow advocates as a critical strategy. “We have power when we work together as a community,” she said. “When we have more voices and more power, that’s when change happens.”

Her advice to other organizers speaks to a lifetime of advocating: “Don’t forget to take care of yourself. Self-care isn’t always pretty, sometimes you need to take time off to care for your whole person, not just your advocate self.”

The Speak Up for Better Health Awards celebrate the everyday people who make our health system more equitable and responsive. The annual awards are hosted by The Center for Community Engagement in Health Innovation at Community Catalyst. Sarah Schwegel is a Speak Up winner.