Since then, Maddie has made it her life’s work to understand how certain systems can impact disabled and marginalized communities. As a Disability Media and Content Specialist, Maddie proudly lends her voice to the discussion around equal and fair access for people with disabilities. Through her podcast and social media expertise (@urfavdisabledgal), Maddie has been recognized as a vital leader in creating spaces that blend her passions for patient advocacy, disability justice, gender identity, and self-care into an open dialogue with the larger world.

“Sometimes the amount of energy I spend thinking and acting on my Pompe requires more time and energy than my actual job that pays for my housing, food, and basic human necessities,” she says. “It’s not as simple as the medical community thinks it is.” This is one reason why Maddie speaks up for better access to treatments and resources, recentering the experiences of sick and disabled people to include them in the process. 

Recentering is a major theme in Maddie’s storytelling, addressing systems of injustice while focusing on joy as an act of strength and empowerment.

“If you can find and center joy, and contribute to that joy—that’s effectively not allowing harm to hold power over you,” she shares. “Any way that I can do that, whether that’s through art, writing, or any future podcasts, at the end of the day that’s really meaningful to me.”