Disability Is Not a Bad Word: Jenna Udenberg on Advocacy and Accessibility
Disability advocacy isn't just about ramps and automatic doors—it's about creating a world where everyone can fully participate in every aspect of community life. In our latest podcast episode, we spoke with Jenna Udenberg, an author, disability advocate, and accessibility educator who's challenging society to go beyond minimal compliance and embrace true inclusion.
Diagnosed with juvenile rheumatoid arthritis at age seven and using a manual wheelchair since age eight, Jenna's experience navigating a world not designed for her has given her unique insights into what genuine accessibility looks like. Her journey began in a small rural town on Minnesota's North Shore in the late 1980s, years before the Americans with Disabilities Act would establish basic protections. This timing meant that Jenna and her family had to fight for her right to equal access in spaces where her peers moved freely.
Despite these challenges, Jenna built an impressive 19-year career as a music educator before pivoting to become what she calls an "accessibility educator." This transition was accelerated by her experience as a 2020 Bush Fellow—an opportunity that arrived just as the COVID-19 pandemic changed everything. The fellowship, designed to help community leaders "think bigger and think differently," initially had Jenna planning international travel to study accessibility innovations. When the pandemic made travel impossible, particularly for someone with immunocompromising conditions, she found herself at a crossroads that ultimately led to writing her book, "Within My Spokes: A Tapestry of Pain, Growth and Freedom."
Jenna's approach to disability advocacy centers around a simple but powerful notion: disability is not a bad word. With approximately 24-29% of Americans identifying as disabled—a percentage that grows daily—disability is part of the human experience. As Jenna explains, disability culture and community represent the most diverse minority group, and anyone can become part of it at any moment through accident, injury, or medical condition. Rather than focusing on what people with disabilities lack, Jenna emphasizes our shared human needs: community, belonging, access to food, restrooms, and safe spaces.
Through her nonprofit organization, Above and Beyond With U, Jenna works with individuals, businesses, and organizations to create spaces that go beyond minimum ADA requirements. She challenges people to think beyond merely getting mobility-impaired people through the door, asking critical questions like: "Can we use the restroom? Can we grab a cup of coffee? Can we go in the staff lounge and make lunch? Can we be an employee in your space?" These questions shift the focus from technical compliance to meaningful inclusion.
What makes Jenna's advocacy particularly effective is her ability to connect her personal story to universal values of belonging and community. She shares how a band director who allowed her to play trumpet left-handed (against conventional wisdom) not only influenced her career path but taught her that every person has worth regardless of ability or disability. This experience shaped her commitment to helping others find their voice and recognize their own importance.
The conversation ends with a powerful challenge to listeners: "What are you inspired to do? What are you inspired to change?" It's a reminder that being moved by someone's story is only meaningful if it leads to action—whether in our personal lives, workplaces, or communities. Creating truly accessible and inclusive spaces benefits everyone, not just those with visible disabilities.
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