Advocacy with humor and hacks
Marisa Spain has a knack for making everyday advocacy both fun and impactful. Based in southeastern Michigan, Marisa brings fresh energy to accessibility awareness with her unique YouTube channel, Disabled in Nature, where she reviews public restrooms for accessibility in a series called “When Nature Calls.” Her witty take on something as essential as restroom accessibility adds humor to the serious gaps she’s out to close. “You don’t know how important restroom access is until it’s denied to you,” Marisa says, explaining her mission to help both business owners and viewers understand what true accessibility looks like.
In addition to her work online, Marisa also co-leads the Everything Early Onset Zoom group alongside Archer Sverdrup, creating a safe, open space for people of all ages who were diagnosed with FSHD early in life. The group meets monthly, focusing on shared experiences and life hacks to navigate FSHD. “I hope our group provides a sense of community – something I didn’t have much of when I was younger,” Marisa shares. For her, this group is about more than support; it’s a way to let others know they aren’t alone.
Marisa’s passion for advocacy and community building is part of who she is. “The best thing we can do for each other right now is to build a strong community,” she reflects, acknowledging how the group meets both practical needs and the emotional support crucial for living with FSHD. When she’s not working on her YouTube channel or helping to lead the early-onset group, Marisa enjoys life in Michigan with her husband and their dog, Harley. Through her work and her advocacy, Marisa shows how powerful a positive, practical approach to challenges can be.
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