Emily Ladau, author and activist, is a part of the rare disease community. She lives with Larsen syndrome – like Marfan syndrome, it’s a genetic condition that affects connective tissue and can cause hypermobility. Her first book, Demystifying Disability, What To Know, What To Say, And How to be an Ally, was published by Ten Speed Press, an imprint of Penguin Random House, in September 2021.
I spoke with her to learn more about her advocacy work and how people in the Marfan and related conditions community can become more comfortable with standing up for their rights and sharing their stories.
Engagement is Valuable at Any Level
Emily explained that she engages in activism because anything that makes life easier for the disability community is going to make things easier for everyone. She calls this the curb-cut effect. Dips in the curb were first instituted for wheelchair users, but they make life easier for everyone, whether you have a stroller, a suitcase, or a skateboard. Additionally, she thinks it’s important for the world to understand that disability rights are human rights and vice versa.
“Every issue is a disability issue because any issue that affects human beings also affects disabled people,” said Emily.
While activism is often considered daunting, it doesn’t need to be. When people think of activism, she says, they might think of “jumping into meetings with legislators and giving talks to an audience of thousands.”
However, Emily wants everyone to know that “advocacy can look like so many things to so many people.” You’re not a slacker if your activism takes place on social media, and sometimes the most effective way to make change is by starting small and working on a person-to-person level.
“Sometimes connecting with one person can really make a huge difference,” she says. “The most powerful moments for me have been the ones where I have a conversation with somebody.”
If you’re not sure where to start, Emily encourages you to start with something small, like starting a petition, making a phone call, or sending a text to a friend. An advantage of starting small is that’s where you’re connecting with the people who are already part of your community.
Sharing Your Story
Emily suggests having a conversation with someone and sharing your personal story, which can help to contextualize big issues.
“That starts to put it in perspective and really change people’s minds,” said Emily. She views storytelling as an important part of activism.
“I’m really big into storytelling. I think that there’s a whole lot of power in sharing a story and meeting people where they’re at, rather than just having a conversation about a disability experience without really interweaving that personal aspect of it,” said Emily. “However, you don’t necessarily owe your story to anybody. You have to advocate in a way that feels right and comfortable for you. So it’s not about doing what anybody else is doing. It’s about advocating in a way that you think is best for yourself.”
Emily Ladau is a passionate disability rights activist, writer, storyteller, and digital communications consultant whose career began at the age of 10 when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. Her writing has been published in outlets including The New York Times, SELF, Salon, Vice, and HuffPost. Emily has spoken before numerous audiences, from the U.S. Department of Education to the United Nations. Central to all of her work is a focus on, and harnessing the power of, storytelling as a tool for people to become engaged in disability and social justice issues.
The Marfan Foundation offers numerous opportunities to share your voice through your story, targeting legislators as well as our online community. Learn about these volunteer opportunities on our website. or reach out to Stephanie Enger-Moreland, manager of community programs, at firstname.lastname@example.org.
Ennis Rook Bashe is a graduate student at NYU Silver School of Social Work and a 2021-2022 Marfan Foundation intern. They are also a proud cat parent and avid gamer.