Born with Larsen Syndrome, a genetic physical disability, Emily Ladau is a wheelchair user. At the ripe old age of 10, she was featured on several episodes of Sesame Street to educate youngsters about living her life with this disorder. And she’s been on that mission ever since. Emily’s the author of “Demystifying Disability: What to Know, What to Say and How to Be an Ally.” Emily’s also Editor-in-Chief of the Rooted in Rights blog, a platform highlighting the disability experience. This is clearly an important conversation we’re excited to share!
Audio Transcript
Sandi Klien (00:05):
Welcome to another edition of Conversations with Creative Women. I’m Sandi Klein. Disability rights activist, public speaker, writer, storyteller, digital communications consultant, podcast host, all describe Emily Ladau, my guest today. Emily was born with Larsen syndrome, a genetic physical disability, leaving her a wheelchair user. At the ripe old age of 10, Emily was featured on several Sesame Street episodes to educate other youngsters about living her life with this disorder that affects the development of bones throughout the body.
Sandi Klien (00:42):
Fast-forward a few years to 2013, when Emily graduated from Long Island’s Adelphi University with a Bachelor’s degree in English. In 2017, she was named to one of the school’s 10 under 10 young alumni. A year later, she was honored with the Paul G. Hearne Emerging Leader Award from the American Association of People with Disabilities. Emily is the author of Demystifying Disability: What to Know, What to Say, and How to be an Ally. She’s also the Editor-in-Chief of the Rooted in Rights blog, a platform designed to highlight narratives on the disability experience. Her articles have appeared in the New York Times, the Huffington Post, Self, Salon, and she’s given numerous talks on behalf of the US Department of Education to the United Nations. Oh, and Emily co-hosts the Accessible Stall, a podcast that focuses on disability issues.
Sandi Klien (01:34):
So Emily, welcome and thanks so much for joining me remotely from Long Island today.
Emily Ladau (01:40):
Thank you for having me. I’m excited to be here.
Sandi Klien (01:42):
So, I never heard of Larsen syndrome. Is it ubiquitous?
Emily Ladau (01:48):
It is actually a pretty rare disorder. Uh, last I checked our stats, I believe it was something like one in 100,000 people-
Sandi Klien (01:58):
Oh, come on.
Emily Ladau (01:59):
… are diagnosed with it, uh, and as if to, you know, say that maybe I should be playing the lottery because of the rarity of it, um, my mother and her younger brother, my uncle, also have it, although it manifests differently in each of us, and I am pretty much a full-time wheelchair user. I actually would note that I call myself a wheelchair user instead of saying wheelchair-bound-
Sandi Klien (02:29):
Okay.
Emily Ladau (02:29):
… because I’m very much someone who sees my wheelchair as a source of freedom and a source of mobility-
Sandi Klien (02:36):
Mm-hmm (affirmative).
Emily Ladau (02:36):
… and a way to get around the world.
Sandi Klien (02:37):
Mm-hmm (affirmative).
Emily Ladau (02:37):
So, if anything, it, it does the opposite of, of binding me to anything. Um, and my, my mother also uses a wheelchair most of the time and my uncle uses a wheelchair sometimes. So it just manifests differently in different people.
Sandi Klien (02:51):
So there’s degrees of the intensity of this syndrome?
Emily Ladau (02:56):
Yes. I would say that everyone who experiences it has similarities, but also very much has their own personal experience with how it manifests within them.
Sandi Klien (03:07):
This is all you’ve ever known.
Emily Ladau (03:09):
It is, yeah. So, um, it is genetic and I was born with it. And so it’s very much a part of my life experience, and a part of what makes me who I am.
Sandi Klien (03:20):
Obviously, the fact that your mom, as well as your uncle, have Larsen syndrome was what, a bonus for you, for lack of a better word?
Emily Ladau (03:30):
You know, a lot of people would say it’s really tragic, but to me, it’s been a really great gift because I grew up with these built in role models-
Sandi Klien (03:39):
Hello.
Emily Ladau (03:39):
… and I knew that, you know, it’s very much possible to thrive as you grow older with a disability. And so I’m, I’m very much someone who considers myself lucky.
Sandi Klien (03:51):
Mm-hmm (affirmative). You know the expression, how pregnant are you? You’re either pregnant or you’re not pregnant, right? Does that apply to Larsen syndrome?
Emily Ladau (04:00):
I would say that there are definitely, um-
Sandi Klien (04:04):
Degrees?
Emily Ladau (04:04):
… degrees of it, yeah, as you were mentioning before, but at the same time, yes, you know, if you have that diagnosis, you’ll certainly have manifestations of it and it sort of depends on the person, how it impacts them. I mean, there can be impacts for cardiac related issues. It can cause muscle weakness and it can cause joint dislocation. So, it kind of just depends on the person.
Sandi Klien (04:33):
So in other words, how the disease initially manifests itself in someone is basically how it stays with you, or does it get worse, does it get better?
Emily Ladau (04:43):
It’s not necessarily progressive, um, but it is something that can change over time, simply because our bodies change over time. It’s a very natural human thing for our bodies to continue to evolve as we go through life.
Sandi Klien (04:58):
So, talk to me, Emily, about growing up. With the fact that you were in a wheelchair, I am assuming that you were integrated into, uh, a regular public school.
Emily Ladau (05:08):
Yes. I did actually go to a mainstream public school, although I was pretty much the only visibly disabled kid who was-
Sandi Klien (05:16):
Yeah. Yeah.
Emily Ladau (05:17):
… in that school.
Sandi Klien (05:18):
And so what the hell was that like?
Emily Ladau (05:20):
Good question. You know, on the one hand, I do feel like I had a relatively positive experience in most senses, but what was always lacking for me was seeing peers with disabilities, and you know, when you don’t have yourself reflected back at you, it can be incredibly challenging to figure out how to find your place in the world. And so, um, it wasn’t until my parents actually started sending me to summer camps for kids with disabilities that I really started to connect with other disabled kids and form a sense of community and identity.
Sandi Klien (05:58):
It’s funny, when you said, um, summer camp, the documentary Crip Camp, where young people with varying degrees of disabilities, uh, spend the summer in the Catskills. Did you do that?
Emily Ladau (06:09):
It was not the Catskills, but it was exactly the same sort of thing, yeah. It very much was in the tradition of Crip Camp, and a lot of the people who I connected with when I was at camp are people who have also become really passionate disability advocates. So I think that, uh, summer camps are where a lot of the action happens in the-
Sandi Klien (06:30):
(laughs) Yeah. Right.
Emily Ladau (06:30):
… disability community.
Sandi Klien (06:31):
Uh, what- what was that like as a youngster? First of all, maybe having to explain to your other friends and classmates the fact that you were different, and I’m not being facetious about that. Yes, they know you’re different by virtue o- of the fact you had to be in a wheelchair, but on the one hand, to sort of feel that maybe aloneness, if I can put that word in, and then all of a sudden say, “Hey, we want you on TV”?
Emily Ladau (07:02):
I think that there was always a sense of isolation and especially when I was younger, I very much wanted to shy away from talking about my disability unless it was convenient for me. Um, I was very much of the mindset that the best compliment you could pay me was, “Oh, I don’t even think of you as disabled.”
Sandi Klien (07:24):
Mm-hmm (affirmative).
Emily Ladau (07:25):
And that has since evolved to the point where if you tell me that you don’t think of me as disabled, to me that’s erasing a whole part of my identity-
Sandi Klien (07:35):
Ah.
Emily Ladau (07:36):
… and I very much want you to think of me as disabled. But it took me a while to get there. And so, a 10 years old, um, you were referencing being on TV. So, I appeared on multiple episodes of a season of Sesame Street to educate kids about my life with a disability, and I think that was my first taste of what it could be like to show other people that disability is just a natural part of the human experience. Now granted, I was 10 years old, so you know, I don’t know how cognizant I was of the power of what I was doing.
Sandi Klien (08:10):
Right, right.
Emily Ladau (08:10):
But in hindsight, I mean, having that opportunity to advocate on a national platform really gave me the push that I needed to embrace disability and not to want to shy away from it.
Sandi Klien (08:24):
So, was that just seminal in your life in terms of the direction that it took personally as well as professionally, that here you are, never having thought that you would be hanging out with Elmo and Kermit the Frog and (laughs) whoever?
Emily Ladau (08:41):
I would say it was not seminal until later. I was always a vocal advocate because I saw that modeled for me in my mother and in my family. I knew that speaking up for myself was incredibly important, but my plan had always been to be a high school English teacher, and in a way, uh, Sesame Street and my early advocacy experiences are connected to that because I thought that I could create a classroom experience that was inclusive for everyone, and really respected the fact that everybody learns differently, thinks differently, moves, communicates differently.
Emily Ladau (09:18):
And so it wasn’t until midway through college that I had a quarter life crisis, I like to call it, and I said, “I don’t want to teach English. I want to be a disability advocate.” And I don’t know what exactly caused that shift. I think it was a really gradual thing, where I started to come into a sense of self, and then eventually realized that this was the direction that I wanted to take, but it was a long journey to get there.
Sandi Klien (09:49):
Perhaps the word might be mission.
Emily Ladau (09:54):
It could very well be. I think at this point, my mission in life is really to educate about disability, to help demystify it, if you will.
Sandi Klien (10:04):
Mm-hmm (affirmative), yeah.
Emily Ladau (10:05):
And to get people to understand that even though it’s something that we think of as taboo and something that we think of as shameful and this-
Sandi Klien (10:11):
And that we feel so sorry for you.
Emily Ladau (10:14):
Exactly, exactly. And I really want to push back against that pity narrative, and also against that inspiration narrative. I don’t want you to be inspired because I got out of bed this morning.
Sandi Klien (10:26):
(laughs) Okay.
Emily Ladau (10:26):
And got into my wheelchair, you know?
Sandi Klien (10:27):
Yeah, yeah.
Emily Ladau (10:28):
But nor do I want you to feel bad for me. I just want you to recognize that this is how I’m experiencing the world, and that’s okay. And I love teaching people about that.
Sandi Klien (10:38):
What’s that like, though, for you, feeling, if I could put words in your mouth, that you always have to work harder than somebody else?
Emily Ladau (10:47):
It’s definitely something that I grapple with. So, you know, in terms of actually physically having to work harder, I certainly have my moments of frustration where I wish that things were just
Emily Ladau (11:00):
… physically easier to do, and I certainly have my moments where I wish that the world was more accessible, meaning that it was more welcoming to the disability community. So that can be something as small as having a ramp in front of a store, or something as big as inclusive employment practices, right? Every issue really is a disability issue. And so in terms of that area of things that I struggle with, I would love to see that change. Uh, and I think there’s more progress to be made.
Emily Ladau (11:33):
And then in terms of emotionally, there’s also the toll of feeling like you’re constantly a teachable moment. And I think I’ve set myself up for that in a lot of ways because of the career path that I chose, so I’m okay with that, but I also understand that not everything with a disability just wants to live their lives constantly having to teach people about their existence.
Sandi Klien (11:56):
Sure. Sure. How old are you?
Emily Ladau (11:57):
I just turned 30.
Sandi Klien (11:59):
So you have been working this hard for 30 years?
Emily Ladau (12:04):
Essentially, yes. Um, and, you know, but I don’t say that because I’m looking to evoke any sort of emotion about people feeling bad or anything like that. Quite the opposite, actually. I really want people to kind of take a look at that and say, “Why have we created a society where so much is more difficult for the disability community? Why have we allowed a society to exist where every system that we have in place in some way discriminates against the disability community?”
Sandi Klien (12:37):
Do you feel at all that the more things change, the more they stay the same?
Emily Ladau (12:41):
For sure. I was born a year after the passage of the Americans with Disabilities Act, which is a really seminal law for the disability community. And I always say that you can create policies, but you can’t legislate an attitude change.
Sandi Klien (12:57):
(laughs) Right. Right.
Emily Ladau (12:57):
(laughs) So 30 years on, I mean, I’m literally someone who came up just as the Americans with Disabilities Act was going into effect, and 30 years on, I still feel like there are a lot of ways that the law is ignored, and that’s because there’s policies in place, but we haven’t changed attitudes.
Sandi Klien (13:17):
Well, it, we certainly got such a tension because of Crip Camp, how many of the, the campers became activists and worked their asses off to get this act passed and to open everybody’s eyes to this.
Emily Ladau (13:30):
The work of the activists who went to, uh, Camp Jened, Crip Camp, and then eventually all came together in Berkeley, California to shape the work of the Disability Rights Movement is something that I don’t take for granted for a second.
Sandi Klien (13:48):
Mm-hmm (affirmative).
Emily Ladau (13:48):
It is the reason why I do enjoy so many rights and freedoms today.
Sandi Klien (13:52):
Mm-hmm (affirmative).
Emily Ladau (13:52):
So I think that it’s important to strike a balance between being incredibly grateful for all of the total bad asses who came before me-
Sandi Klien (14:00):
(laughs) Right.
Emily Ladau (14:01):
… and also recognize that it’s incumbent upon me and the next generations to continue that work.
Sandi Klien (14:06):
So what was that like for you in your head to say, “Well, you know, I’m gonna get a bachelor’s in English, and maybe I’ll teach, or maybe I’ll write”? At some point it must have, like I said, become a no-brainer that you’re gonna not do that. (laughs)
Emily Ladau (14:24):
You know, when I was midway through college, I found myself realizing that I could teach in an English classroom, or I could find other ways to use those skills to teach in bigger classrooms. And so that’s essentially what I’ve done. I took all of the training that I got and the life experience, put it together, and it’s really shaped my passion for advocacy and doing it in a way that focuses on storytelling. I’m very much about telling stories and about forming connections with people, because it’s one thing to give someone a number.
Emily Ladau (15:01):
I can say, “One in four American adults have a disability,” which is the current statistic. And you would say, “Oh wow, yeah, that’s a lot.” But then if I start telling you a very specific story about an instance of discrimination that I experienced while looking for a jor, or while trying to attend a play, or a comment that someone made about me, suddenly it’s not just a statistic. You realize that, no, that one in four is a real person.
Sandi Klien (15:32):
Right. Right. So take us on that trajectory of… What was the first event for you, that, “I’m gonna do this,” and, and was it becoming an author? Was it becoming a speaker? Was it the editor in chief of this blog? You do a lot of shit, Emily.
Emily Ladau (15:51):
I, I like to wear a lot of hats. I do. And I think that’s because it really is what keeps me going and makes me feel very, very driven. But the first real moment of feeling like this was what I wanted to do for a career actually happened in college, because there were a series of awareness weeks happening, and there was drunk driving awareness week. And then following that, there was disability awareness week. And I could not get over the juxtaposition of something like drunk driving and disability. And of course we need to be aware that drunk driving is a problem.
Sandi Klien (16:36):
Right.
Emily Ladau (16:36):
But to me, the implication felt like, we also need to be aware of disability because it’s also a problem.
Sandi Klien (16:42):
Mm-hmm (affirmative). Mm-hmm (affirmative).
Emily Ladau (16:43):
And so the framing of it really frustrated me. And I will never forget that one of the resident assistants in my dorm said, “Can I borrow your wheelchair for an event?”
Sandi Klien (16:57):
What?
Emily Ladau (16:58):
And I said, “What am I supposed to do? Where am I supposed to go? No.” True story. And so I had just, at that point, been driven to a feeling that maybe we weren’t quite understanding the point of disability awareness.
Sandi Klien (17:13):
You think? (laughs)
Emily Ladau (17:15):
It had just become fun and games. “Let’s borrow Emily’s wheelchair and do an obstacle course.” What does that teach you about disability? Nothing.
Sandi Klien (17:22):
Oh my God. Oh my God.
Emily Ladau (17:24):
So I wrote an op-ed for the school newspaper, and I talked about why I took issue with the juxtaposition of something like alcoholism awareness week and disability awareness week. Although I do want to say that my thinking has actually since evolved on that, at least in the sense that some people do consider alcoholism to be a disability.
Sandi Klien (17:45):
Okay.
Emily Ladau (17:45):
But my feelings on awareness remain the same. You know, why are we focusing on awareness? Why are we not focusing on action, on acceptance, on inclusion? And so fro m that moment forward, something really snapped in me where I said, ” I want to talk about this, and I want to do it for a living. And I don’t know what that looks like, but I’m gonna do it.” (laughs)
Sandi Klien (18:06):
And did you basically embark on this solo?
Emily Ladau (18:11):
I had really great support. My parents have always been an incredible support system, and I’m so, so lucky. Um, and at the time, I was dating somebody who was also a wheelchair user, actually, and he was really supportive at that time as well. So I started to kind of figure out how I could carve a path for a career that I really knew nothing about, and I, I called up a local disability organization, and I said, “Hi, can you give me an internship this summer?” (laughs)
Sandi Klien (18:45):
(laughs)
Emily Ladau (18:46):
And they had no idea what to do with that or what to do with me, but I ended up working there for the summer, and kind of created my own internship. And then at the end, they paid me with a $75 gift card to a clothing store that I liked.
Sandi Klien (19:03):
Oh, whoa. (laughs)
Emily Ladau (19:05):
And I said, “You know what?”
Sandi Klien (19:06):
How generous. (laughs)
Emily Ladau (19:06):
(laughs) “I’ll take the, the resume experience.” And so after barging in there and creating my own internship, once I graduated college the following year, I had found another internship program in Washington, D.C. for the American Association of People with Disabilities. And they placed me at an organization for the summer, and that was where I first immersed myself in disability as a culture and a career. And so it was never a solo journey. It’s always been in community with incredibly supportive people.
Sandi Klien (19:42):
Obviously, you have always had to prove yourself, and regardless of what you’ve undertaken.
Emily Ladau (19:52):
I think that there is an inclination that I have, and it’s something that I’ve put on myself, to be an overachiever, and I can’t shake that. Um, when I was younger, I used to feel like academics were my sports because I couldn’t physically play sports. And so I wanted to be very good at academics because I thought that that was how I would prove to people that my disability was not something that was stopping me, and-
Sandi Klien (20:23):
That you were gonna be defined by it exclusively.
Emily Ladau (20:24):
Exactly.
Sandi Klien (20:24):
Mm-hmm (affirmative).
Emily Ladau (20:25):
But then all these years later, I’ve come to realize that I was internalizing a lot of the stigma and discrimination towards disability within myself, because there is absolutely nothing wrong with being a disabled person. There is nothing wrong with moving about the world in the way that works for you. And if you’re not an academic, that’s okay. We live in this society that tells us that we have to prove that we can overcome disability. I don’t buy into that anymore. I think that disability is just something that’s part of who you are-
Sandi Klien (21:02):
Hm.
Emily Ladau (21:02):
… and however you move about the world, and however you communicate, and whatever you’re good at or whatever you need support with, that’s okay. That’s part of being a human being.
Sandi Klien (21:13):
What was that like for you in terms of embarking on this road, especially with young people? There’s Emily in the spotlight here. You know, with the focus on you, and, “This is who I am, and this is what I’ve done, and, and so there.”
Emily Ladau (21:28):
A lot of young people now come to me, and I’m, I’m, first of all, still grappling with the fact that I no longer really get to call myself young. Like, once-
Sandi Klien (21:38):
Uh, excuse me. (laughs)
Emily Ladau (21:38):
(laughs)
Sandi Klien (21:41):
Uh, yeah, no, no.
Emily Ladau (21:42):
Well, I-
Sandi Klien (21:43):
Everything, everything’s relative, okay?
Emily Ladau (21:45):
It is. You’re right. It’s relative. It’s relative.
Sandi Klien (21:46):
Yes. Connected to me, you are young, okay?
Emily Ladau (21:49):
See, but, but then you have, like, 12 and 14-year-olds who are looking at me like I’m from an entirely other planet, and so I’m-
Sandi Klien (21:58):
Right. From a s- from a, um, a senior
Emily Ladau (22:00):
(laughs)
Sandi Klien (22:00):
… citizens (laughs) community.
Emily Ladau (22:02):
So I’m, I’m definitely in that weird flux, in terms of identity and age. But there are a lotta people who ask me how I got to where I am and what advice I would give and things like that. And, you know, I always try to remind people, I’m one person. Uh, and if you’ve met one person with a disability, then you’ve met one person with a disability. I’m not representative of one billion people worldwide-
Sandi Klien (22:28):
Right.
Emily Ladau (22:28):
… who have a disability. I’m simply a human being who is disabled, who has embraced that as part of my identity, and I have climbed my way up the metaphorical ladder, although ladders are not really accessible, but you get what I mean.
Sandi Klien (22:44):
(laughs) I get the image.
Emily Ladau (22:46):
(laughs) Yeah. And so I try to let people know that I don’t consider myself some kind of spokesperson for the community. I just consider myself a human being who is passionate about educating and connecting and telling stories and amplifying other people’s stories.
Sandi Klien (23:05):
I’m gonna be a little patronizing, ’cause I sort of think that’s a little bit naïve. There’s a mission here, and I think that that, that you’re exposing, and you’re sharing, and that … I’m not, I’m not saying we have to vote for you for president, but you (laughs)-
Emily Ladau (23:22):
(laughs)
Sandi Klien (23:23):
… but you’ve just got to appreciate that, whether it’s a conscious act on your part or not, something I’m assuming you live with every single day.
Emily Ladau (23:30):
Absolutely. And it’s funny you say that, because one thing that I love to talk about is the way that our identities overlap and intersect. And so not only am I disabled, but I’m a disabled woman. And so when I am thinking about how I present myself to the world and how the world perceives me, I’m not just thinking about it from the perspective of disability. I’m also grapplizing with the internalized stigma that comes from being a woman. And I’m constantly having to, you know, prove myself in spaces, because I am a young disabled woman.
Sandi Klien (24:08):
Right.
Emily Ladau (24:08):
But, at the same time, I also have a lot of privilege because I can communicate verbally, because I am a White woman, because I come from a background where I’ve been financially supported, right? So there’s a lot of ways that I sort of balance the privilege that I have with the fact that I’m still fighting to be taken seriously.
Sandi Klien (24:31):
So at this point in your life, you still are very much the recipient of discrimination.
Emily Ladau (24:38):
Every day.
Sandi Klien (24:39):
Every day.
Emily Ladau (24:40):
Every single day, whether it’s a comment online, whether it’s somebody saying something to me when I’m out in public, whether it’s-
Sandi Klien (24:47):
Like what? What does somebody say to you when you’re out in public, for, for God’s sake?
Emily Ladau (24:47):
Oh, my goodness. Okay. Um, a lot of the times, the comments are things that people think are funny, but they’re really just frustrating to hear. So it’ll be like, ” Do you have a license for that thing?” Or-
Sandi Klien (25:02):
Oh, Jesus.
Emily Ladau (25:02):
… “You’re gonna get a speeding ticket,” you know. Or they’ll talk to the person that I’m with and not to me. Just literally, uh, yesterday, I was trying to go to lunch with a friend. We were gonna be eating outdoors, and, you know, staying safe. But we were going inside just to order, and a woman raced in front of my friend to open the door, and then asked my friend, she said, “Can she get through the door?” And my friend looked at me and was like, “Yeah, we’re fine.”
Sandi Klien (25:33):
Mm-hmm (affirmative).
Emily Ladau (25:34):
And then she said, “Oh, well, you just roll along, then.” And, you know, it’s not that she didn’t mean well-
Sandi Klien (25:40):
Yeah, yeah.
Emily Ladau (25:40):
… but it’s just that when you’re constantly hearing things like that, you’re sort of reminded that people don’t think of you as a full human being.
Sandi Klien (25:48):
That’s right.
Emily Ladau (25:48):
And when you hear that every single day, it does begin to grate on you. But there’s also bigger instances of discrimination that we don’t think about, whether it’s access to public transportation, whether it’s access to be able to vote, whether it’s access to jobs, education. You name it, there’s probably gonna be an accessibility issue there.
Sandi Klien (26:12):
So your work is cut out for you. I mean, you’re never not tackling an issue.
Emily Ladau (26:17):
Pretty much, because even something like obtaining healthcare, getting the equipment that I need, ensuring that I have access to get from point A to point B if I’m traveling. It’s always a matter of being a few steps ahead; of being very hyper-aware of the logistics, and it gets tiring after awhile. But that’s very much the world that we still live in.
Sandi Klien (26:45):
Yes. I mean, I think to, to grouse about it, which you are not doing, is too … I mean, this is how it is, for God’s sake, you know? And even though there might have been, there might have been some movement, and I would think it fair to say not glacially, in terms of awareness, your work is never, ever, ever, ever done. Can anybody meet Emily Ladau for who Emily Ladau is? Or is Emily always described as a person who’s in a wheelchair before she’s 30 or funny or has a podcast or as a writer? It just doesn’t happen.
Emily Ladau (27:25):
It’s interesting, because my disability is, in so many ways, so apparent. So when you meet me in person, the wheelchair is the first thing you see. Uh, it’s been a very different world on Zoom as of late, because unless you’ve looked stuff up about me, you probably don’t immediately know that I’m in a wheelchair, because you don’t see it on the screen. And so, uh, that’s been an interesting experience in and of itself. But, yeah, the wheelchair is front and center. My disability is front and center. But, at the same time, I go back and forth between wanting to make sure that my disability is not erased as a part of me and wanting to be defined not solely by my disability. So the balance that I hope to strike is that you see me as a disabled woman who is also a writer, who is also a speaker. Disability is part of me, and I’m proud of that. You don’t need to overlook it to also notice all of these other things about me.
Sandi Klien (28:20):
Right.
Emily Ladau (28:20):
But, at the same time, it’s not the only thing about me.
Sandi Klien (28:24):
This categorizing and putting in boxes, I just would imagine sometimes you wanna scream; at least, I wanna scream for you.
Emily Ladau (28:32):
I never wanna put anybody in a box, and it’s also so silly to put people in boxes, because nobody is solely one identity. But, for me-
Sandi Klien (28:39):
No, but that you felt that you’ve been put in a box, I mean.
Emily Ladau (28:42):
Exactly. I think that people have boxed me in in a lot of ways. But, on the flip side, I think at this point, I’ve probably boxed myself in in a lot of ways, because I’ve defined myself and my career and my life’s work by disability. But it’s really just, again, like I was saying, striking that balance, I don’t want people to see me only as a disabled woman. And I don’t want people to see me just as my wheelchair either.
Sandi Klien (29:07):
Right, right.
Emily Ladau (29:08):
I’m a whole human being who is sitting down.
Sandi Klien (29:12):
What’s that been like for you to speak publicly? Are you in demand?
Emily Ladau (29:19):
I would say yes, as strange as that is to think of myself that way, but I do a lot of public speaking. My top priority, though, is to really diversify where I speak. So whether it’s a large corporation or it’s a very small, local parent-teacher association, I’m really happy to talk to you, a variety of different people, because my mindset has always been that I wanna change one mind at a time. I believe that broad, sweeping change is possible, but not if we’re not meeting each other where we’re at. And so I love the variety of speaking to different crowds from different communities.
Sandi Klien (30:02):
What’s that like for you to acknowledge the impact that you’ve made?
Emily Ladau (30:08):
Oh, it’s incredibly challenging for me to do that, because I deal with so much imposter syndrome, I think that was what I had meant to get at before, just in terms of being a, a young, disabled woman. There are many days where I wake up, and I’m like, “What am I doing? I don’t know what I’m doing. Why is anybody listening to me?” (laughs) And …
Sandi Klien (30:28):
I think we all go through that on some level, that self-doubt. But I, I would find that so interesting that on some level, that is one way that you describe yourself.
Emily Ladau (30:39):
I think that being able to call myself a disability activist and knowing that I really have made an impact on people is something that I have to constantly keep reminding myself. Because, if I don’t keep reminding myself that there are ways that I’ve made a difference, that’s when the work starts to become defeating.
Sandi Klien (31:02):
Mm-hmm (affirmative).
Emily Ladau (31:02):
If you can wake up in the morning and you can say, “Maybe I’ll change one person’s mind today,” that’s how I keep going.
Sandi Klien (31:10):
Right. Right, right. Are you always on?
Emily Ladau (31:12):
(laughs) Um, in some senses, yes. Uh, I like to joke that I’m a professional disabled person, and anyone who’s part of my life would tell you that, you know, it’s disability 24/7 pretty much, because I am thinking about it, reading about it, writing about it, talking (laughs) about it. But, at the same time, I definitely have two modes of existing, and there are times when I wanna just turn off. And, even if I think something is a little bit problematic or I’m frustrated by something, I just wanna sit there and just be.
Sandi Klien (31:49):
Mm-hmm (affirmative). Mm-hmm (affirmative).
Emily Ladau (31:50):
Put my activist hat on. So yeah, um, there are times when I’d like to turn myself off, but I’m probably on more than you would think, because disability is not just a career, it’s an identity. You know, I don’t take it off and put it on a shelf at the end of the day. Just because I got outta my wheelchair to get into bed doesn’t mean that I’m not disabled anymore. When I wake up in the morning, I’m disabled. When I go to sleep, I’m disabled, and even though it’s my career, it’s also a part of the rest of my life, too.
Sandi Klien (32:21):
And so that is what is in your head all the time. And that’s what’s been in your head all these years.
Emily Ladau (32:29):
Yeah. But oftentimes, not in a conscious way. It’s simply because it’s how I move about the world that it just informs my thinking. So in the same way that thinking in a certain language might feel natural to someone who’s bilingual, they might move in the direction of thinking in one language instead of the other. For me, I’m thinking in terms of disability, even if I’m not conscious of it.
Sandi Klien (32:55):
What would you like to do that you haven’t done
Sandi Klien (33:01):
… in your life and in your career?
Emily Ladau (33:04):
I think a lot of people think, when I answer this question, that it’s probably a cop-out, but I want to be doing what I’m doing on a larger scale and I want to be doing it in community with more people. Right now, I feel like I have accomplished a lot. I’m very excited about all the things that I’ve accomplished, but I want to scale what I am doing so that storytelling is not just something that is my trajectory, it’s something that I can support other people to also make that their trajectory as well. So I would love to start a mentorship program where I give people the opportunity to learn about the art of advocacy storytelling. And that, to me, is what I have not done yet. I’ve done it on small scale. I’m lucky to be able to mentor people. I’ve done a small mentoring fellowship for a couple of disabled writers, but I’d love to see it on a much larger scale.
Sandi Klien (34:07):
Let’s talk about gender in connection with this. Where does that fit in, your approach to life, your advocacy? I’m just curious, where does-
Emily Ladau (34:17):
Oh, my gosh.
Sandi Klien (34:18):
… how does that play out?
Emily Ladau (34:19):
Where doesn’t it fit in? I mean, just like I was saying before, you know, I’m disabled when I wake up and when I go to sleep, I’m also a woman when I wake up and I go to sleep, and so I have all of the feelings of inadequacy that come with being a woman in the world who’s constantly showed the ideal physical representation and I am always saying, “I look nothing like that-“
Sandi Klien (34:44):
Right.
Emily Ladau (34:45):
… you know, and sometimes it’s something as shallow as, well, I can’t strut my stuff in high heels, you know, how can anybody find me sexy if I can’t walk around in high heels?
Sandi Klien (34:54):
Right, right.
Emily Ladau (34:55):
There’s that and then, obviously, it’s, it’s bigger things too, like just feeling that I’m not taken as seriously as the man next to me and so it, it’s a, it’s a big variety of feelings that I experience when it comes to being a disabled woman, but, largely, it is something that affects my self-esteem and something that I have to work through every single day, just because I don’t see anyone like me really shown back at me in the media and so I have to find acceptance within myself because you don’t really get it externally.
Sandi Klien (35:32):
You’re not never not working, like I said. Is there time to exhale and just-
Emily Ladau (35:39):
There is.
Sandi Klien (35:39):
… just to be?
Emily Ladau (35:42):
There is and, when that comes, it’s a rare and it’s a beautiful thing, but it also sometimes comes in those very intimate, quiet moments with the people who know you best or the people who understand your experiences best. So, you know, there are times when, for example, I will just be sitting quietly with my boyfriend and I don’t want to be thinking about disability, so I’m not thinking about it, you know, or just not thinking about it, but sometimes something will flip a switch in my head and something will set me off and then I will need to talk about it. So it’s … you never know when the switch is going to flip, but, at the same time, in those quiet moments with those people who know you best, I feel like I can turn off and not be constantly calculating.
Sandi Klien (36:29):
What is his reaction to your activism-
Emily Ladau (36:32):
(laughs).
Sandi Klien (36:32):
… that you’re, that you’re really out there, people know who you are?
Emily Ladau (36:37):
Uh, I think he has gotten used to the fact that that’s how it’s going to be.
Sandi Klien (36:42):
Mm-hmm (affirmative).
Emily Ladau (36:43):
Um, it’s still weird for me, honestly, so I’m sure it’s weird for him, but he is supportive and he is patient and, my gosh, he will listen to me talk about it when I need to, but he’ll also be the one to tell me like, “Okay, let’s turn it off for a little while (laughing).”
Sandi Klien (37:02):
Mm-hmm (affirmative). Yeah.
Emily Ladau (37:02):
“Let’s just take a break.”
Sandi Klien (37:03):
Mm-hmm (affirmative). So what groups of people that may not have heard from you in the past, separate from Sesame Street when you were a youngster, how much are you focusing on that age group now?
Emily Ladau (37:15):
It varies. It absolutely varies. I’ve spoken to groups of kids, you know, and I’ve also spoken to groups of educators for students of all ages. I’ve really spoken to a wide variety of audiences, but I think the major audiences that I continue to want to reach out to are educators and employers and I think that that’s because education and employment shapes so much of the world around us, uh, whether we want it to or not, it’s how it is, and so, if we can create more inclusive educational practices, that then will set people up for a more inclusive future, which will then open up further opportunities for them down the line to pursue employment if that’s the path that they choose to take. So educators and employers have always been two big areas for me, but I’ve spoken to people who work for, you know, corporations and they do branding and storytelling. I’ve spoken to people who are religious leaders. I mean, I want to talk to anyone and everyone who is willing to truly open their mind and listen.
Sandi Klien (38:33):
And to make change?
Emily Ladau (38:35):
That’s my ultimate hope. I’ve always felt that, if I talk to a small group and they take it back to their larger group … so, for example, if I’ve spoken to a PTA and they bring it back to the school and someone in that school decides that they’re going to make a change in how they’re teaching or maybe they’re going to make something more accessible for a student, you know, that ripple effect is so exciting to me.
Sandi Klien (39:01):
Oh, I bet, I bet. What does Emily like to do for fun?
Emily Ladau (39:05):
Fun, what do I like to do for fun? Well, pre-pandemic, it was-
Sandi Klien (39:09):
Oh, right (laughs).
Emily Ladau (39:11):
… absolutely, (laughs) it was spending a lot of time in New York City. I’m a born and raised Long Islander, so I loved going into the city. I really loved going to shows, but more so offbeat shows. As much as I love Broadway, I also really loved small, uh, local, independent theaters. I really love spending time outside, especially there’s a couple of really nice parks and pathways by my house that I love walking down. I’m also just a big fan of sitting and unwinding with silly YouTube videos at the end of the day, um, just, you know, being, being a person in the little in-between moments.
Sandi Klien (39:52):
Yeah.
Emily Ladau (39:53):
It doesn’t always need to be a great adventure. Sometimes i just want to sit and do nothing.
Sandi Klien (39:57):
And chill, exactly. In your social circle, are there many disabled people who you hang with?
Emily Ladau (40:05):
Absolutely, 100%. Now there are. When I was growing up, not so much, just because I wasn’t surrounded by-
Sandi Klien (40:12):
Yeah, not ubiquitous. Mm-hmm (affirmative).
Emily Ladau (40:15):
… Yeah, but … and, also, in a way, I was a little bit afraid of associating with disabled people because I thought that would somehow call more attention to my disability, which-
Sandi Klien (40:25):
And it would define you even more.
Emily Ladau (40:27):
… exactly, which, now, I think is so silly because how hypocritical of me to ask that you accept me for who I am, but I’m afraid to be seen with other people like me, you know.
Sandi Klien (40:37):
Mm-hmm (affirmative).
Emily Ladau (40:37):
And I, I had to grapple with that, but now, I mean, the more disabled people, the merrier. A lot of my friends are disabled and I’m very, very lucky because it means that I have so many people who, uh, really relate to what that experience is like.
Sandi Klien (40:53):
Do you ever get depressed?
Emily Ladau (40:56):
Absolutely, absolutely.
Sandi Klien (40:57):
Okay.
Emily Ladau (40:58):
Oh my gosh, yes. Um, but the thing that I think people need to understand is that it’s not always just like I’m depressed because I’m disabled. You know, like I’m depressed because I’m a human being in the world and sometimes depression is a real thing that we all deal with. I think that there are aspects of my disability that contribute to it, but sometimes it has nothing to do with that, so I think it’s … the conception that I always try to move people away from is this idea that disability is depressing, you know. There are hard parts of disability, there are parts of my disability that get me down, but I wouldn’t change who I am at all.
Sandi Klien (41:36):
Wow, what a great way to end on a upbeat, positive note. Emily Ladau, I can’t get over how easy this was and, I don’t know, I just so appreciate your honesty and, uh, when it comes to females, I mean, this was just so great. We, we really rock and rule the world, you know?
Emily Ladau (41:55):
I would say so and I’m just so grateful to be able to have insightful conversations like these, so thank you so much.
Sandi Klien (42:03):
Oh, totally my pleasure. Anything you want to leave us with that might be on your front burner?
Emily Ladau (42:10):
Well, I believe that, by the time people are hearing this, my book will be out in the world. It’s called Demystifying Disability: What to Know, What to Say, and How to Be an Ally, and so it will, hopefully, offer a starting point to answer questions that people may have about disability and I’d love for anyone who wants to check it out to give it a go.
Sandi Klien (42:33):
Well, thank you for your drive and your need to educate us because it’s just such an important thing for everybody, absolutely everybody. Emily, lots of continued success and I hope you’ll touch base with us down the road. You know where to find us.
Emily Ladau (42:51):
Absolutely. Thank you, Sandi. This was wonderful.
Sandi Klien (42:54):
My pleasure. Join us for another edition of Conversations with Creative Women. I’m Sandi Klein.
