Blog Out Loud 2019: Sarah Schwegel on Disability Fearlessness

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A photo of Sarah Schwegel. Members of the SDI staff stand around her.

Our very own Sarah Schwegel, youth transition coordinator at SDI, was one of three speakers featured at Blog Out Loud 2019, a storytelling event organized by the Young Nonprofit Professionals Network (YNPN) of St. Louis. This year’s theme was, “The Intrepid Spirit: How we muster and maintain fearlessness in a fleeting moment or across an entire lifetime.”

Blog Out Loud strives to showcase a “patchwork of perspective,” and Sarah shared many of her life experiences as someone with a disability. Most people associate disability with an unsatisfying life of being sheltered and missing out. Sarah, however, jumped at the chance to dispel this notion in front of a live audience.

“I was excited and honored,” Sarah says. “I am grateful for the opportunity to share how amazing life with a disability can be.”

Sarah described losing sight of her mother and becoming hopelessly lost at Disney World. One might expect a four-year-old in pigtails and sunglasses, zipping along at six miles per hour in her power wheelchair, to be fairly conspicuous. Nevertheless, Sarah had nearly made it to Space Mountain and back before the Disney World detectives could finally track her down and reunite her with mom.

Travel has always been a passion of Sarah’s, and her participation in power soccer and the church youth band have allowed her to do a lot of it. Road trips aren’t without complications, though. Hotels, in particular present a host of inconveniences. Sarah recalls one occasion where both bathroom and shower doors had to be removed, plus a lawn chair had to be commandeered from the pool area and placed in the shower stall, just to make it accessible. It seemed the hotel ran short on accessible rooms, bringing ironic new meaning to the term “accommodations.”

As Sarah explains to the audience, churches are not required to be ADA-accessible, which presented its own unique challenges when her youth band embarked on a 10-day tour. She recounts situations where poorly conceived, makeshift ramps were far too steep or narrow, to the point that just getting on and off stage safely felt like a miracle.

While Sarah’s harrowing tales of survival are mostly lighthearted, evoking laughter from the crowd assembled at Grandel Theatre, other moments of brutal honesty force audience members to quietly contemplate a few of the mundane, day-to-day processes they likely take for granted.

Sarah talked about the personal care attendants she turns to for so many aspects of daily living. Simply going to the restroom is a time-consuming process, requiring assistance from one or two people, or the use of a clunky apparatus known as a Hoyer lift. Transportation is a common challenge for people with all types of disabilities. Sarah fondly remembers a trip with her friends to Chicago, a place where she was delighted to discover wheelchair-accessible Uber vehicles.

Fearlessness across an entire lifetime is an apt description for Sarah’s indomitable approach to overcoming obstacles, not allowing the preconceived notions of others to place restrictions on her potential. Events like Blog Out Loud offer an ideal platform for chipping away at negative stereotypes, as Sarah is fully aware.

“We’re never going to get society to move past being afraid of disability if we don’t tell our stories.”

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