MORE THAN MEETS THE CHAIR w/Emily Ladau

From Sesame Street to the streets of advocacy, Emily Ladau has been using her voice to shift perspectives and spark change since the age of ten. Born with Larsen syndrome and never one to shy away from the spotlight, she’s shown the world that disability is not a deficit—it’s a story worth telling in full color and full volume. Whether through her editorial leadership, her bestselling book Demystifying Disability, or simply through conversations that crack open compassion, Emily leads with heart, humor, and honesty. In this conversation, we talk Big Bird, big myths, and even bigger truths—one question at a time.

ALLIÉ: Your words, Emily, “I was born with Larsen syndrome, a genetic physical disability. I first ventured into disability advocacy at age 10 when I appeared on Sesame Street.” My first question is what is Larsen syndrome? My second, did you actually get to meet Big Bird? If so, is he as cool as he seems? 

EMILY: Larsen Syndrome is a genetic joint and muscle disorder that affects people differently and manifests in unique ways for each person. For me, I’m a full-time wheelchair user, and that’s how I navigate the world. My mom and my uncle both have the same disability I do, so it’s very much a part of our family, our identity, our lives. I simply consider it part of who I am.

And now for the much cooler question—though I’ll back up and say this: one cool thing about Larsen Syndrome is that it affects about one in 100,000 people, so it’s fairly rare. It’s even more unique that three people in my family have it. I think that’s a pretty fun fact.

Now, about meeting Big Bird—yes! I met Big Bird, Elmo, Oscar the Grouch, and all the Muppets. And they were actually cooler than they seem. I was 10 years old, so the magic was definitely still alive for me. It was an amazing opportunity to be just another kid in the neighborhood, interacting with these characters who had such an impact on me growing up. And hopefully, I got to play even a tiny role in making an impact on other kids and their caregivers watching—showing the importance of disability representation and that a kid with a disability can just be part of the neighborhood.

ALLIÉ: As a child, then, you were already advocating for disability awareness. So my next question is this: Do you remember the moment you knew—without question—that this was what you were meant to do? That this was the line of work designed specifically for you?

EMILY: I’m sure my parents would joke that I came out of the womb doing this, because I’ve always been outspoken about disability. There’s a family video of me at around three years old, doing my own little speech for a group of medical students while my doctor was explaining things to them. I was just babbling away in the corner, like, “Here’s what I want you to know about disability.”

At seven, I did a disability-related event at my cousin’s school with my mom—we were both speaking on stage. I have no idea what I said, but my mom likes to joke that I stole the show. Then came Sesame Street at age 10. So, yeah, it all felt very natural.

But I didn’t fully see the bigger purpose until later. I actually went to college planning to become a high school English teacher. Then, midway through college, I had what I call my quarter-life crisis and realized that wasn’t the direction I wanted to go in anymore. I wanted to become an advocate. I had no idea what that really meant—and neither did my family. They said, “Okay, but that’s probably not going to pay the bills.” Still, they supported me.

So I shifted gears and began to explore a career in disability advocacy. That’s when I truly realized this is what I’m passionate about. This is what I’m meant to be doing.

ALLIÉ: English is great! But you can’t ignore a calling. And you heard yours. You felt it.
There are people who grow up with invisible disabilities. You grew up with a visible one. And we live in a world that often tells us what we’re supposed to be before we get to decide for ourselves. What’s one moment from your earlier years that challenged or redefined how you saw yourself?

EMILY: I wish I could say it happened in childhood, but I think it really came into focus during college—which still counts as early years, I suppose.

At the time, I was shifting from wanting to be a teacher to wanting to be an advocate. I attended a meeting for the Future Teachers Association, where a professor gave a guest lecture on teaching students with disabilities. He singled me out and said something like, “You should say ‘people with disabilities’ instead of ‘disabled person,’ right, Emily?”

In that moment, I thought: “Why?” I am a disabled person. I’m proud of that. It’s part of my identity. I’m not ashamed. I don’t need to separate myself from my disability.

Around the same time, the school hosted a drunk driving awareness week, followed by a disability awareness event. And something about that juxtaposition really stuck with me. Drunk driving is something harmful we want to prevent. Disability is not a problem to be solved. I didn’t want people to just be “aware” of my existence—I wanted them to accept and embrace it.

So, I wrote an op-ed for the school newspaper encouraging people to move beyond awareness and toward understanding and acceptance—to see the humanity of disability. That whole experience was a turning point for me. It wasn’t an all-at-once lightning bolt moment—but a gradual lightning bolt.

ALLIÉ: Yes, I love that. And I love the idea of “nothing for us without us.” We have to be part of the conversation. That was a powerful, beautiful, gradual moment.
Let’s talk about your work—your book Demystifying Disability, your talks, your editorial projects. They all share a common thread: clarity with compassion. When you think about the impact you’re trying to make, what’s one myth about disability that you wish we could retire for good?

EMILY: First, thank you for “clarity with compassion”—what a lovely and meaningful way to describe what I’m always aiming for. I want to welcome people into the conversation about disability. It can be uncomfortable or unfamiliar, but it’s necessary.

As for the myth I’d most like to retire: the idea that disabled people are a burden on society. It shows up everywhere—workforce, education, transportation, healthcare, voting, social spaces. Every issue is a disability issue because every issue affects the disability community.

Yet, we’re still seen as burdens. Accessibility is “too expensive.” Inclusion is “too hard.” But it’s not. Disability is part of the human experience—part of the fabric of society.

So I encourage people not to see disabled people as burdens, but as threads in the incredible tapestry of our world. Not to be too cliché—but it’s true. We’re human beings. Existing shouldn’t be viewed as burdensome.

And this idea of “special needs”? I always ask: What’s so special about my needs? I have human needs like anyone else. If you want to talk about special needs, let’s say: fan me, feed me grapes, treat me like a queen. That’s special. I’m kidding—mostly.
But truly, I’m not a burden. I’m not special. I’m human.

ALLIÉ: Right. Accessing a doorway isn’t a “special” need—it’s a human one. I love that reframing. Let’s talk about storytelling, clearly one of your superpowers. Was there ever a story—your own or someone else’s—that stopped you in your tracks and made you see the world differently?

EMILY: As a storyteller, I thrive on learning about others. My worldview is constantly evolving—not because of one story, but because I’m always listening to many.

That said, what consistently stops me in my tracks are the stories from people who fought for disability rights before I was even born. When they talk about crawling up the steps of the U.S. Capitol, or staging sit-ins for the 504 regulations, I’m just in awe.

We think of laws as static—just words on paper. But they exist because of people and their sacrifices. There are stories behind every piece of progress.
And every time I hear those stories, I’m reminded: this isn’t just about me. I’m part of something much bigger.

ALLIÉ: Yes—bringing legislation to life by honoring the people who made it happen. It’s powerful.
So between all your advocacy, your editing and writing—and just being human—what keeps you going when the work, especially these days, gets exhausting?

EMILY: I’m not as good as I’d like to be at maintaining balance between work and life—mostly because disability is both who I am and what I do. I can’t take off my identity at the end of the day and put it on a shelf.

Even when I try to switch off, advocacy is in the back of my mind. I’ll see something problematic on TV or encounter a barrier in real life—it’s always there.

But what refuels me most is being with others in the disability community. There’s something beautiful about connecting with people who get it. That fills my cup.

Also, spending time with my family and my fiancé helps me unwind. I love the theater, museums, anything cultural. And sure, that can bleed into work too, since I do a lot with cultural accessibility. But sometimes, just losing myself in a really good show for a few hours? That’s healing.

ALLIÉ: Absolutely. Sometimes we need to step outside ourselves, even if only for a moment. One last question. If every person who hears you speak could carry just one message forward, what would you want that message to be?

EMILY: I’m not a motivational speaker—but here’s as close as I’ll get. I think about advocacy like throwing stones into the ocean. One stone might not seem to do much. But every stone creates ripples. And those ripples do reach others.

None of us have to make the wave of change on our own. We each create ripples in our own way, at our own pace. And together—those ripples become waves.

We’re not in this alone.

​Follow Emily on Instagram:
@emilyladau 
Find her book online:
https://awarenow.us/book/demystifying-disability